Tag Archives: Jennifer Crystal

lyme blog_treat yourself

Treating Instead of Denying Yourself

by Jennifer Crystal

Spring is a time of rebirth and renewal.  Many people engage in some kind of spring cleaning, whether it is airing out their homes or themselves. People open their windows and shake out their rugs. Some do a dietary cleanse. Even religious customs at this time of year are about cleaning out and letting go—Jewish people rid their houses of chametz, leavened food, for Passover, while Christians give up something in observance of Lent.

These customs have good intentions. I respect them and understand the purpose they serve. But this year, after reading a friend’s recent social media post, I started thinking about them a little differently. On Ash Wednesday, which starts the period of Lent, my friend announced that instead of giving something up for Lent, he was going to treat himself to one small, special thing each week.

I stopped to consider this bit of reframing. What if the season wasn’t about denying ourselves something, but instead about adding something positive to our lives? What if it was about nourishment, the way we nurture early spring flowers so they can grow? Refusing ourselves something can hold a negative connotation, but nourishing ourselves has a lovely ring of self-care.

As a patient of chronic tick-borne illness, this reframing especially struck a chord with me. Lyme patients already are denied so much. At our sickest, we can’t work; we can’t socialize; we can’t take care of our daily needs. We’re restricted, and that can make us feel guilty, sad, ashamed, and angry, on top of feeling physically wretched.

Treating Lyme and other tick-borne illnesses means giving up a lot: for me, it means refusing gluten, processed sugar, alcohol, and caffeine. I cannot stay up late, skip my afternoon nap, watch fireworks or a stimulating show, or over-exert myself physically or mentally. These are my needs and they’re in place for good reason. I’m grateful that they allow me to keep ticking.

But sometimes I do feel like I give up a lot—and certainly have given up a lot of bigger things over the years, like long-distance travel, friends’ weddings, financial security, and full-time work at a time when I was supposed to be starting my career and building my life. With those losses came depression, anxiety, and self-blame. It took me a long time to accept my needs and to love myself in spite of them.

This spring feels like an excellent opportunity to renew that self-love. Part of caring for yourself, of course, is recognizing certain things are toxic to you and you must get rid of them. Elimination of foods, stressful people, and negative emotions that hurt you— all are important for self-cleansing. If you are a Lyme patient eating batches of chocolate chip cookies, you are probably overloaded with gluten and sugar, suffering from a candida infection, and jeopardizing your ability to get well. Getting rid of those foods would be a good way to nurture yourself toward optimal health.

But what else can you add that is healthy and feels like a treat? There are lots of great recipes for gluten-free, naturally sweetened brownies and ice cream. These I still eat in moderation, but that makes them all the more special when I do indulge. Dark chocolate is low in sugar and has many health benefits. Eating one piece every day puts a smile on my face.

How else can you fill yourself up rather than deplete yourself? I recently started treating myself to monthly massages. I couldn’t have done this when I was in the throes of Lyme, since a massage likely would have spread toxins further around my body, but now that I’m in remission, gentle massage is good for me. I leave feeling relaxed, my nervous system reacts in kind, and I am able to nap and sleep better.

Your treat doesn’t need to be something big, though. If you are bedridden, there are still ways to nourish rather than deny yourself. How about flipping through photos of happier times, to remind yourself of what will again be possible once you’re well? Or writing down three good things about each day? Or rubbing a nice lotion on your hands and feet? Or finding a favorite new fruit or vegetable to add to your diet?

Cleansing is important. This season, I’m going to make sure the things I do get rid of are things I really don’t need, rather than things I want but am denying myself. In this way, giving things up will be a way of treating myself. In addition to getting rid of things, I am also going to add goodness, to think of more ways to be kind to myself, so that I enter summer ready to blossom.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com

red sox_jennifer crystal

What Can the Red Sox Teach Us About Surviving Tick-Borne Illnesses?

by Jennifer Crystal

When I told my family I was thinking of moving to Boston, my mom said: “As long as you don’t become a Red Sox fan.”

I had grown up a Mets fan, thanks to my baseball-loving grandfather who had watched every game and taken me to many. The family remained loyal to the Mets, but somewhere along the way my mother also became a die-hard fan of that other New York team, the one that shouldn’t be mentioned in Boston.

The first time I went to a Red Sox-Yankees game at Fenway Park, I wore a Red Sox t-shirt, with a tiny Yankees pin over my heart. Even though I looked the part, I didn’t really understand the Red Sox fans all around me. Why did they—and generations of their families before them—continue to support a team that had been purportedly “cursed?” A team that,—until 2004—had not won a the World Series since 1918?

When I discovered the answer, I realized that being a Red Sox fan is not unlike someone surviving one or more tick-borne illnesses.

Despite being loathed by Yankees fans and chided for their bad luck, Red Sox fans held on to their belief that their team would eventually “reverse the curse”. They did this because they had something their rivals did not: faith. In addition to complaining constantly during those 86 forlorn years, they did something else, too. They remained loyal, ignored the naysayers, supported their team, and adopted a get-back-on-the-horse attitude.

I had to do the same thing when I was fighting for a diagnosis, and then again when I was undergoing treatment for Lyme disease and two of its co-infections, babesia and ehrlichia. It took eight years for me to get an accurate diagnosis.  During that time I had waxing and waning symptoms such as fever, flu-like exhaustion, hives, and migraines. Eventually, I became completely bedridden, unable to work or care for myself. Even with my obvious physical deterioration, lots of people didn’t believe me. Even some doctors told me “you’re just being lazy”, “you just need to exercise more”, and “it’s all in your head.”

It wasn’t always easy to ignore these comments, especially when I was feeling so physically and emotionally fragile. I sometimes wondered if these people were right. But deep down, I knew they were not, because I knew my own body. I was an overachiever; laziness was not in my DNA. I was a skier and a runner, and desperately wanted to be out doing those activities. My fevers, rashes and headaches were not psychosomatic. I knew there was something physically wrong with me, so I persisted in searching for answers.

Had Red Sox fans given up after their team was cursed, they wouldn’t have had the glory of seeing them finally win the World Series 86 years later. Had I believed the naysayers, I would still be bedridden. I wouldn’t have ever gotten an accurate diagnosis, nor would I have tasted the glory of remission.

It didn’t take me 86 years to achieve remission, but it did take two once I started treatment, and another three after I suffered a relapse. Sometimes I felt like my diagnoses were a curse. I had to take intravenous antibiotics and strong anti-malarial medication, and even with those and adjunct treatments, I suffered Herxheimer reactions, meaning I often felt much worse before feeling better. My energy would start to improve and my symptoms would lessen, and I’d have hope that things were heading in the right direction, just as Red Sox fans had year after year when their team did well in the regular season.

But year after year, the Red Sox fell short of their goal. They had to come back the following season and start all over. I had to do the same. Even when I made it all the way to remission, I didn’t fully understand the nature of chronic illness, and got overwhelmed by factors that sent me back to the starting point. It took several seasons for me to find the right cocktail of medications and therapies, and to learn how to take care of myself so that my body would stay strong in spite of its limitations.

Throughout those years, I still had naysayers. There are people who don’t understand the relapsing nature of tick-borne disease and think any case, even one that went undiagnosed for eight years like mine, can be cleared up with three weeks of antibiotics. Those people are wrong.

People who move to Boston today might be similarly ignorant. If they don’t know the history of the Red Sox, they might think their baseball team has always been great. They might think the same of their new football team, too, even though the Patriots were not very good until they got Tom Brady—the doxycycline of football. Success hasn’t come easily for these teams. It doesn’t come easily for most patients of tick-borne diseases, either. Lyme disease and its co-infections are real. They take a lot of work and time to overcome.

We need to have faith that the more we spread Lyme-literacy, the more people will understand this. But even if they don’t, we can still have faith in our Lyme Literate Medical Doctors (LLMDs), and in our bodies, to see us through to victory. If that faith dwindles, we can always watch the Red Sox, who might just make it all the way this year. But even if they don’t, they’ll be back out there next season, giving it their all until triumph is theirs. And like baseball, it is often a team effort engaging one’s LLMDs, true friends and family members.


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her replies to questions she has recently received. Do you have a question for Jennifer? If so, email her.

How do you explain to someone that one day you’re so tired and your body aches, and the next day you’re fine?

This is a question with which patients with chronic illness wrestle, whether they have tick-borne disease or another condition that follows a relapsing pattern. With such illnesses, symptoms ebb and flow, even when you’re under treatment. For example, antibiotics can kill bacteria faster than your body can eliminate them, thus causing a back up of toxins known as a Jarisch-Herxheimer reaction. Simply put, this makes you feel worse before better. Once the toxins are eliminated, you go through a period of feeling better, which can last a couple days or a couple weeks, before the process starts over again. It’s very hard for most people who aren’t Lyme literate to understand this. Their understanding of illness is that it is linear: you get sick, you take medicine, and you slowly start to improve until you’re better.

Such is the case for bronchitis or a sinus infection, but not for tick-borne illnesses. I think healing from Lyme is akin to walking up a spiral staircase. You will go around and around. Sometimes you’ll stop on a landing and be steady for awhile. Then you’ll continue climbing, spiraling through various symptoms. You may even slip backwards, because the staircase is steep. But ultimately, after some delay, you make your way to the top, which is relative wellness. Perhaps you can give the naysayers in your life this image to help them understand what it means to have a relapsing illness.

If they don’t understand, find other people who do. Some people in your life just aren’t going to get it, and you don’t have the energy to argue with them; you need to conserve that energy on your health. This is especially hard when the people who don’t understand are the people you need the most—family or close friends. Some may come around eventually; some may not. Focus on the friends and support group members who do validate how you feel. That’s the medicine you really need!

Is it okay that I’ve had symptoms for two years?

There is no “okay” or “normal” with Lyme and other tick-borne diseases. No two individual (cases are alike. Someone who finds an engorged tick and is treated immediately might only have symptoms for a few weeks. Someone like me who went undiagnosed for eight years might be symptomatic through several years of treatment, with lingering, milder symptoms afterwards. Someone who is never properly diagnosed and treated will have symptoms their whole life.

I can tell you that longer-term cases of Lyme disease—those that fall under Stage 2 or Stage 3 of the disease can take years to treat. Spirochetes are smart. They’ve evolved to spiral away from antibiotics, requiring intense, long-term treatment to treat them. Tick-borne co-infections often complicate and lengthen the treatment period, since each pathogen requires a different kind of treatment. Another variable is the strength of a patient’s immune system and how well he or she responds to medication.

If you are under the care of a Lyme Literate Medical Doctor (LLMD) and your symptoms have persisted but improved even a bit over the last two years, then yes, I’d say that sounds pretty typical. If you are not yet seeing an LLMD, GLA can help you find one. Lyme is a bacterial infection that won’t go away on its own. If you’ve received treatment and are still symptomatic, you may need additional treatment. Only an LLMD can determine what’s best for your specific case.

When you said that it felt like your arms and legs were “jumping,” was it like twitching?  

Yes, that would be an accurate description. I described this feeling as part of air hunger, when my arms and legs would sometimes feel like they were having a panic attack. What I meant by that was that my limbs felt like they were gasping for air, the same way my lungs would. Due to neurological upset caused by spirochetes in my brain, my muscles would also twitch (sometimes, when I am especially tired, they still do). It can be a mild twitching, or it can be more of a focal seizure, where that whole area of my body jerks against the bed. For me, these twitches can be an indication that I need Vitamin A1, but only your LLMD can determine the cause and treatment of yours.


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

school lyme

School-Related Difficulties With Lyme Disease

by Jennifer Crystal

Can you imagine missing all of the second grade? Or having to leave college? Lyme disease can have a devastating impact on kids in school.

 

When I was a junior in college, I started getting headaches while doing my homework. Textbook print, which had always been easy for me to read, suddenly seemed small and difficult to focus on. I found myself straining my eyes and struggling to concentrate, often losing my place and having to re-read entire paragraphs a few times. Sometimes I would feel dizzy or nauseous after studying too long, like I was experiencing vertigo.

Thinking my eyesight had worsened, I went to see my ophthalmologist. He suggested magnifying glasses. The answer, I regret to report, was not that simple.

I was suffering from three undiagnosed tick-borne illnesses. Lyme disease, but also two tick-borne co-infections—babesia, and ehrlichia—which had crossed into my central nervous system. I’d been bitten by a tick two years earlier, but I was not subsequently tested for tick-borne infections.

My rash had been brushed off as nothing, and the on-and-off flu symptoms I had in college were also written off as me “just being run-down.”

For the rest of my college career, I wore magnifiers to read, which helped to a degree, but I also developed other, seemingly idiopathic neurological symptoms, such as hand tremors. It would be another six years before I was accurately diagnosed. And I was one of the lucky ones.

I still finished college on time, studied abroad, double-majored, and graduated with high honors. Later, when I was in the midst of treatment, bedridden and suffering from Herxheimer reactions, I couldn’t read at all. Sentences in a simple celebrity magazine swam before my eyes. I couldn’t type because my fingers and forearms ached too much. Writing more than a paragraph by hand exhausted me. Spending more than a few minutes in front of a computer or other screen would leave me with a screaming migraine.

Had I been in school then, I probably would have had to drop out. I might have never earned my degree.

This sadly is the case for many Lyme patients, whether they are diagnosed and under treatment, or suffering from debilitating symptoms which are not yet diagnosed. I know students who had to take a semester or a year off; college students whose illness(es) allowed them only to study part-time, and who still suffered for doing so; even high school students who were home-schooled, hoping to finish their studies in six years instead of four; and elementary school students who had missed two, three, four years of class.

Can you imagine missing all of the second grade? Not being able to socialize with your classmates?  Not having the chance to sit at your desk with fresh school supplies, learn math with your peers, and run around at recess? Missing lunch in the cafeteria, after-school sports tournaments, and evening dances? Aspects of school that I took for granted—and even complained about—but which feel like fantastic unattainable dreams to young patients with a tick-borne illness.

And those are the ones who know that they’re dealing with a tick-borne illness, and are under the care of a Lyme Literate Medical Doctor (LLMD), the ones who hope to regain at least some of their physical and cognitive capabilities one day. For college students like me, who don’t yet know they have tick-borne illnesses, all they know is that suddenly math equations that were easy last year are impossible this year. They are suddenly mixing up their letters, forgetting assignments. They can’t concentrate in class, and often have their heads on their desks because they’re so tired. They’d rather nap than run around at recess. They might have headaches, inappropriate outbursts, frustration and rage, or malaise.

From an outsider’s perspective, these symptoms might seem psychological or behavioral. And sometimes they, in fact, are. That’s why it’s important that children be clinically evaluated for all possible root causes of their struggles. But if a child seems to be suffering from common Lyme symptoms, or spends time playing outdoors, or who suddenly finds a tick bite or rash, they should also be evaluated for the possibility of tick-borne diseases as soon as possible.

Sadly, children ages 3-14 are at the highest risk for these diseases because they spend so much time outside (and are lower to the ground than adults, often rolling around in the grasses or running through the woods).

Early detection is key. Not only doctors but school nurses, teachers, and parents should know signs and symptoms to look out for, and should be aware of the many preventative measures such as doing daily tick checks, drying clothes at high heat, wearing light-colored clothing, and wearing long pants and high socks. Lyme disease that is caught right away can often be cleared up with three weeks of antibiotics. If you miss this early window for treatment your risk for chronic disease grows exponentially. Why, even of those treated in a timely fashion some 20% still advance to the chronic forms of the disease.

Had my tick-borne illnesses been diagnosed immediately, in all likelihood I would have had an easier time studying, and could have kept up my high-achieving momentum for more than just a couple years after college. Instead, I ended up losing the second half of my twenties. I don’t want that to happen to you or your child.


Additional Resources

jennifer crystalJennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

life with lyme

Scheduling Life with Lyme Disease

by Jennifer Crystal

Flexible vs. rigid? How keeping to a schedule can impact one’s life with Lyme disease.

 

In 2007, I suffered a severe relapse of Lyme and two of its tick-borne co-infections Babesia and Ehrlichia. I had been in remission just a few months before I crashed back to ground zero. It took another couple years for medication and adjunct therapies to help me get back on stable ground.

I say “help me” because those therapies could only do so much of the work. The rest was up to me. I had to accept my illnesses and the limitations they imposed on me; this strategy became part of my “fight” against them. I had to make behavioral or lifestyle changes that would help my body heal, rather than just expecting it to do so regardless of how I lived.

One of those changes was creating and sticking to a strict schedule. My sleep doctor taught me that medication and neurofeedback would help my raging insomnia and hallucinogenic nightmares, but I also had to have good sleep hygiene. That meant going to bed and getting up at the exact same time every day. It also meant taking naps at the same time every afternoon. If I pushed my bedtime or nap-time too late, I wouldn’t be able to sleep, and everything would snowball until I was a melted down mess.

People who didn’t understand neurological Lyme disease thought I was too regimented. They laughed as if to say …

Would it really kill you to stay up an extra 15 minutes? Is it really that big a deal if you don’t get a nap today?” The implication being, “Can’t you be a little more flexible?”

Now that I’ve been in remission and steadily getting healthier for over a decade, I can be a little more flexible. Some nights I can push bedtime an extra hour and not pay for it too severely. But back when my health was super-fragile, there was no margin for error.

Even though I have some wiggle room with bedtime now, I do not have the same flexibility with nap time. If I lay down by 1:30 P.M. every afternoon, I get a good, comfortable nap, and wake up refreshed and ready to take on the rest of the day. If I push just half an hour until 2 P.M., everything starts to fall apart. My brain fog rolls in, I get cranky like a toddler, and I become too tired to fall asleep. Then I spend my time in bed anxiously rolling around, not getting the rest I need, and the remainder of the day—and sometimes the next day—is a wash. That half an hour is precious to me, so I’ve had to learn to advocate for it. I’ve had to learn what my limits are, which boundaries I can push and which I cannot. I had to learn to schedule my life—teaching, writing, socializing, accordingly. This discipline is, I’ve learned, the only way for me to control my tick-borne illnesses, rather than allowing them to control me.

The same is true not just for my daily schedule—which includes taking medications at the same times every day, and sticking to a consistent gluten-free, sugar-free diet—but for my weekly and more general schedule, too. When I was recovering from my relapse, I wanted to get better as soon as possible and thus scheduled more therapies and appointments than I could physically handle. I quickly realized that I did not have the energy to go to talk therapy and physical therapy on the same day. Conversely, my brain really needed three neurofeedback sessions a week instead of two. I started parsing out my week: physical therapy on Monday, neurofeedback on Tuesday, talk therapy on Wednesday, neurofeedback on Thursday, and so on. Getting well could not be rushed. It had to be my full-time job.

While I no longer need weekly medical appointments, I am still careful to stick to a schedule that works for my health. I teach classes in the mornings or evenings. I only write in the mornings, and not on days that I’m teaching. I don’t exercise during the week if I know I want to go kayaking or skiing on the weekend. I still go to maintenance integrative manual therapy and neurofeedback appointments every month.

I wish there was a magic schedule formula I could give all Lyme patients. But just as there is no set protocol for treating Lyme and co-infections because no two cases are alike, there is no set way for living your life with these illnesses. You have to learn your own limitations, and be willing to schedule your life within them. You have to learn your own boundaries and be willing to speak up for yourself. You have to learn which of those boundaries you can push and know what the consequences will be if you do so. And most importantly, you have to ignore other people’s opinions about your schedule. No one knows your body and its particular needs better than you do!


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

The Idea of Hope

by Jennifer Crystal

Hope is a tricky concept for patients with chronic illnesses. It is something everyone—healthy or sick—wants, but summoning hope is not always easy when the world around you looks bleak. Someone can say to you, “I hope you feel better soon,” and you know they mean it. But when your path towards health seems to move one step forward and then three steps back, it’s hard to have hope that things will ever improve.

I know this struggle, because I wrestled with it at my lowest points of illness. When I was not yet diagnosed with Lyme and two of its tick-borne co-infections— babesia, and ehrlichia—I was in bed with flu-like symptoms for two years. I did get a kind of half accurate  diagnosis of chronic Epstein-Barr virus, but close is not good enough in medicine.

I tried acupuncture, integrative manual therapy, Chinese herbs, a specialized diet, and talk therapy. But my symptoms did not improve. Instead, they increased; I developed insomnia, hallucinogenic nightmares, and migraines. In the beginning of those two years, I held out hope that a combination of rest and adjunct therapies would make me well again. I hoped I would get back to the life I had left behind.

But as time wore on and my health deteriorated, I exhausted my personal resolve. “I’m never going to get better,” I wailed to a friend on the phone one day. “What if I feel like this for the rest of my life?”

This particular friend had suffered a traumatic brain injury years earlier after falling off a cliff on a bike. Air lifted to safety, she’d barely survived, and doctors told her she’d never regain her full cognitive capacities.

She proved them wrong. She still has symptoms she has to monitor, but now, she travels all over the world doing international development work. She’s married and is raising a beautiful six-year-old daughter. She’s athletic and independent. She had to learn to walk, talk, and think again after her accident. For awhile, doctors had thought her best hope would be a vegetative lifestyle. Instead, she is now thriving. Her hard work and determination made her well, but that didn’t mean she always had hope.

So instead of telling me, “You have to hold out hope!” like so many well-meaning people did when I worried I’d never get well, my friend said to me, “It’s okay to feel hopeless right now. I’ll do the hoping for you.”

I remember how my body and heart relaxed when I heard those words. I’d been given permission to have “negative” feelings. This kind act took away some of the pressure I felt to always have a positive attitude, even when I was too sick to smile. But not only was my friend letting me off the hook from that pressure, she was also saying I didn’t have to worry about summoning hope when I was unable to do so, because she’d take care of that task for me. It’s no different, really, than praying for another person. You can still send them your best of intentions, even when they can’t produce those sentiments themselves. A person without hope can still be hoped for.

Sometimes, too, it’s enough just to have even a vague idea of hope. One of my creative writing students, who struggles with depression, wrote about how frustrating it can be when people tell her to be hopeful. She says she would like to be if she could, but the depression often blocks her.. On days when that cloud of depression is slightly less oppressive, however, she can think about the idea of hope. She can’t necessarily summon hope for her particular situation, but she can recognize that the idea of is out there somewhere. Just hoping to someday regain hope, she says, is enough for her.

When you’re that sick, hoping for hope can feel more attainable than hope itself. Just start with that small step.

And if you can’t even imagine the idea of hope, hold on, and know that others are holding out hope for you. I lost hope completely, but let others surround me with it while I put all my focus into getting well, and I got healthier than I ever dreamed I could. You can, too.

I am hoping for the best for you.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

The Danger of Denial

by Jennifer Crystal

One of the many rewards of writing this weekly blog is connecting with patients and caregivers all over the world. I receive emails from people telling me their stories and asking me questions. I recently wrote to check in on a patient with whom I’d been in frequent contact, and was surprised when he told me he no longer wanted to talk with me, because he was working on just forgetting about his illness.

I cringed. Not because this person was cutting off contact with me, but because I knew the danger of denial.

I’m well-versed in tick-borne disease denial because I practiced it for many years. Who among us hasn’t wanted to deny the worst of our problems, hoping we can just sweep them under the carpet and pretend they’re not there? How much easier life would be if we didn’t have to deal with illness, work issues, or relationship troubles.

Society has largely taught us that it’s brave to take a “mind over matter” approach, to somehow will ourselves through our pain, to push through it. I did this for eight years. I had been unknowingly bitten by a tick the summer before my sophomore year of college. I developed hypoglycemia, and then a horrendous flu. When nurses at my college Health Center couldn’t pinpoint a diagnosis, they suggested my symptoms were all in my head. To prove them wrong, I continued running, skiing, participating in several campus activities, and double majoring in English and French. I studied abroad. I served on the Student Government Association. I wrote for the campus newspaper. I volunteered in the local community as a Big Sister. I worked as a lifeguard at the pool.

Often, I didn’t have the energy to do any of those things. After weeks or months of burning the candle at both ends—while trying to hide physical symptoms of exhaustion, fever, and low blood sugar— my body would give out. I would get so sick that I’d have to miss classes and activities for a week or more while I recuperated in the Health Center. Had I taken better care of myself throughout that time—listening to my body when it said I was pushing it too far, following up with other doctors to find out the cause of my physical symptoms—I would have had better overall stamina. But doing so seemed weak. I had always been a highly productive, high-achieving person, and I thought it showed great personal tenacity to push through my symptoms so that I could continue to operate at a high level.

In reality, it was foolish. I wasn’t showing strength or perseverance; I was simply denying what was actually going on in my body.

Years later, when I was finally accurately diagnosed with Lyme and two of its co-infections, babesia and ehrlichia—and bedridden, hooked to an IV, as a result—I  discussed the problem of denial with a therapist. “The thing about sweeping garbage under the rug is that it accumulates there,” she said. “And then that garbage starts to stink.”

When that smell becomes overwhelming, we have no choice but to deal with the stink of whatever problem we’re trying to deny. This is exactly what happened to me. Six years after my initial tick bite—after graduating and moving to Colorado to teach skiing despite worsening symptoms—I got mono. Because I had underlying tick-borne infections, I couldn’t fight this acute illness, and the mono slipped in to chronic Epstein-Barr virus. I became completely bedridden, unable to work or care for myself. I had no choice to but to give up my independence and move back to my home state of Connecticut to live with my family. It would be another two years before doctors discovered my underlying tick-borne illnesses, and several more years after that to work my way into remission.

At that point, pushing through—i.e. denial—was no longer an option. I was simply too sick. All those hours in bed gave me a lot of time to reflect on how silly I’d been to push through the early years of symptoms. If I’d taken better care of myself then, and gone to better informed doctors, I might never have gotten as sick as I did.

Denial wasn’t the only culprit in my fate— a weak immune system, and the illnesses themselves had to come first. But denial certainly didn’t help.

In the end, it only extends our suffering. A mound of garbage is much harder to deal with than a small pile of sweepings. Chronic illness, relationship woes, or personal problems that are ignored don’t go away. They just get bigger.

I worry for that patient who is trying to forget his illness, because I know what will happen: the problem will eventually become so big that he will be forced to deal with it. I understand the urge to deny. But I also know the dangers of it. I hope that patient sees this post and reconsiders his choice. The consequences of denial are simply too severe to ignore.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

lyme literate doctor

The Dangers of Playing Doctor

by Jennifer Crystal

Being a Lyme-literate patient doesn’t mean you’re a Lyme-literate doctor. It’s important to know the difference.

 

Remember the old TV ad where the actor says, “I’m not a doctor, but I sometimes play one on TV”? Well, I’m not a doctor either, but sometimes I feel like I play one in real life.

I’ve become so well-versed in tick-borne diseases that I can distinguish between symptoms of Lyme and their co-infections; explain in scientific detail the issues with testing; talk biofilms and inflammatory cytokines and Herxheimer reactions. I have explained to actual doctors what it means when Lyme crosses the blood-brain barrier, why spirochetes evade antibiotics and how tick-borne illnesses affect acute infections. I know which blood tests I need to be ordered every month, and I can interpret the results.

I am Lyme-literate. But I am not a doctor. It’s important to remember the difference.

Anyone who has suffered from an illness for an extended period of time becomes knowledgeable about it. It’s a natural consequence of spending so much time in doctor’s offices and in bed. You get to know your symptoms—and the reasons behind them—because you’re living them first-hand. I consider this a positive effect of my illnesses, because I’m an informed healthcare consumer who can work with my doctors to make good decisions for my health. Moreover, I can help spread Lyme literacy by teaching others what I’ve learned.

The downside to this wisdom, though, is that we can start to view everything through the lens of our particular illness. Whenever someone tells me they have a rash, or flu-like symptoms, or idiopathic headaches, I immediately wonder, Could they have Lyme? We Lyme patients all know someone, either personally or in the public eye, who presents with what seem like Lyme symptoms, and we are sometimes too quick to share our opinion of the situation.

These people may very well have Lyme or some other tick-borne infection. I’ve had friends show me photos of bullseye rashes, or tell me stories of symptoms, and I’ve been able to point them to a Lyme-Literate Medical Doctor (LLMD) who has accurately diagnosed them with the disease I could only, as a non-doctor, suspect they had. It’s crucial for me to remember though that my role in that patient’s journey is simply to inform and where possible guide. Only an LLMD can make an actual diagnosis.

When one starts making blanket statements like “Oh you definitely have Lyme” or “That person doesn’t have Parkinson’s; it’s actually Lyme” one runs the risk of feeding into Lyme-related frenzy.  Someone who is new to Lyme recently asked whether LLMDs also feed that frenzy.

“Don’t they all just say everything is Lyme?” she asked me.

Well, no, they do not. A good LLMD will look at both test results and a clinical evaluation to assess whether a person is suffering from tick-borne illnesses or from something else, be it Parkinson’s, multiple sclerosis, or possibly an autoimmune disorder. A knowledgeable LLMD remembers his or her Hippocratic Oath: to admit when they don’t know, and to do no harm.

Lyme patients must do the same. It’s imperative that we help spread Lyme literacy. But we must tread carefully between offering educated advice and playing a role we’re not qualified to fill. Our illnesses are real. Let’s therefore stay true to our real-life duty as Lyme literate citizens: to help educate through our insight and experience, without trying to play the LLMD.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

EVERY COUPLE MONTHS, LYME WARRIOR JENNIFER CRYSTAL DEVOTES A COLUMN TO ANSWERING YOUR QUESTIONS. HERE ARE HER ANSWERS TO QUESTIONS SHE IS FREQUENTLY ASKED.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

Since blood tests aren’t 100%, how can you be definitive you have Lyme?

Lyme disease is difficult to diagnose for exactly the reason you describe: there is not yet a reliable test. This is because current tests look for antibodies for Lyme in your blood, rather than for the bacteria itself. Western Blot tests from labs like Igenex are more sensitive, looking for a larger spectrum of bands than the standard CDC test, but Western Blot tests are still not fool proof. The best way to know if you have Lyme is to get a clinical diagnosis by a Lyme-Literate Medical Doctor (LLMD), who will look at your complete medical history and symptoms.

In our society we tend to think tests are the only way to diagnose disease, but it’s important to remember that doctors diagnoses lots of illnesses—like colds, sinus infections, and the flu—without tests. We trust their expertise in those areas and we have to do the same with Lyme, as long as the doctor is Lyme literate. My CDC tests did come back positive—for Lyme and co-infections babesia, and ehrlichia—but it was my doctor’s clinical expertise that made me sure of my diagnosis.

The other way you can tell you if really have Lyme is based on how you react to treatment. If you experience a Jarisch-Herxheimer reaction, when you feel worse before you feel better because the antibiotics are killing the Lyme bacteria faster than your body can eliminate them, then you know the spirochetes really are there.

The CDC states that laboratory tests are “helpful” in diagnosing Lyme, but not definitive. The best thing you can do is find an LLMD whom you trust. Had I not found an LLMD to diagnose and treated me accurately, I would still be bedridden.

 

I had Lyme years ago, and now I think I have a new infection. If my blood tests come back positive, how will I know if that’s an old or new infection?

Blood tests look for two different types of antibodies: Immunoglobulin G (IgG) and Immunoglobulin M (IgM). IgG are longer-term antibodies that are produced later and stay in your system after you’ve had an infection. If you had chicken pox as a child, you still have IgG antibodies for chicken pox. IgM antibodies are produced more immediately, and represent a new, acute infection. Since you had Lyme before, you will still have IgG antibodies for it. If you show IgM antibodies, however, that’s a sign of a new infection. Your LLMD will be able to differentiate between the two.

That said, after a tick bite, it can take your body awhile to build up enough antibodies to produce a positive blood test. For that reason and for the reasons outlined in question 1, it’s important for you to see an LLMD who can evaluate whether your symptoms are a sign of new or recurring infection, and also whether you have new or recurring co-infections.

 

What helps most with low blood sugar?

Lyme disease can impair adrenal function, which in turn can cause reactive hypoglycemia (blood sugar swings). This is also a common symptom of babesia. Hypoglycemia was one of the first symptoms I experienced. Shortly after finding a strange red rash on my forearm, I fainted one day due to low blood sugar. This had never happened to me before. I continued to have low blood reactions at inopportune moments for years. Though doctors confirmed I was hypoglycemic, they never looked into why I’d suddenly developed it. Had they, my tick borne illnesses might have been diagnosed much earlier.

Now that I have an accurate diagnosis and have been treated, my hypoglycemia is better, but not gone. There are a few things that have helped me the most. The first is sticking to a gluten-free, sugar-free diet. This has helped my blood sugar stay more stable, with the added bonus of keeping intestinal yeast overgrowth at bay.

I try to limit carbohydrates like bread and pastries (even the gluten-free, sugar-free kind, because they still cause a quick rise and then drop in blood sugar) and instead eat whole grains like rice and quinoa. I’ve found that it helps to have protein and complex carbohydrates at every meal and snack. The protein gives me sustained energy; without it, my blood sugar will crash an hour or two after the meal. The carbohydrates fill me up and raise my blood sugar to a healthy level; without them, I feel nauseous and lightheaded.

I know when my co-infection babesia is flaring up because in addition to air hunger  (feeling like my body isn’t getting enough oxygen), exertion fatigue and headaches, my blood sugar crashes more frequently, and I have bouts of lightheadedness. I’ve found that during these times it helps to eat meals rich in iron. A steak and a big bowl of spinach can make a big difference. Cinnamon is also a great blood sugar stabilizer. Try sprinkling some on steel cut oats with protein powder for breakfast.

Finally, I recommend always having snacks on hand. You never know when you’re going to get stuck in traffic and your blood sugar will drop. I always carry a granola bar and a box of raisins in my purse, and I keep a juice box (made with 100% juice and no added sweeteners) on my nightstand, for those pesky middle of the night crashes.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her atjennifercrystalwriter@gmail.com

chronic illness

To Be Blunt: How Chronic Illness Made Me More Direct

by Jennifer Crystal

Having a chronic illness can sharpen your communication skills

 

A dear friend of mine passed away from cancer last year at only 38 years of age. In one of many conversations I had with him in the year leading up to his death, I asked how his diagnosis had most changed him.

“I have zero tolerance for bullshit,” he replied.

My friend was patient, humble, and kind. He could—and gladly would—listen to anyone for hours, taking the time to really process what they were saying before offering a thoughtful response. He almost never had a knee-jerk reaction. He also never, ever swore. Therefore, his response to my question stunned me. But it also made perfect sense.

When you have limited energy, as is the case for most Lyme sufferers, you have no time for drama or uncertainty. You can’t waste time analyzing conversations or situations for some mystery subtext, because you don’t have it to give. When you are deciding whether you can shower or do the laundry—but not both—you start to look for the most efficient ways to deal with all aspects of your life, be they physical, mental or social.

My friend recalled a scenario in which a colleague stopped by his office, asking for advice on how to talk to her boss about a certain issue. He remembered getting antsy, because he was sick and had limited time to do his work, but also because he realized that the only person who could adequately answer her question was the boss himself.

He remembered thinking, just go talk to him directly, and then we won’t have to analyze what he might be thinking or what he might have meant by whatever he said.

Knowing how tired my friend was and how hard he was working to triage his life, I didn’t see his thinking as out of character. I saw it as smart. As common sense. As an ability to see the forest for the trees.

I, too, had learned to see the bigger picture while dealing with a long-term illness. I, too, had learned to step back, to ask, what’s really going on here, and how can I best deal with it? In my healthy days I was a chronic over-analyzer. I spent hours, entire days, tearing apart a situation—usually involving a boy—and while I can still fall into that pattern, the repercussions on my health are too severe to keep that mindset for long. I simply do not have the luxury of giving situations the mental energy I used to. I must conserve my mental energies as well as my physical ones. I have no time for bullshit.

As such, having Lyme has made me much more direct. If I have a concern, I communicate it. If I’m not sure what’s going on in a relationship, I ask about it. If I need clarification on what someone said, I ask for it. While I still go to friends for advice, nine times out of ten I go directly to “the boss,” whoever or whatever that might be in a given situation.

Some people are startled by this bluntness. They are taken aback by the directness of my statements. I’ve seen the looks on their faces and watched their uncomfortable responses, and I’ve learned that I sometimes need to soften my directness, to go about it in a way that works for me and for the person I’m addressing. I try to do this by being a compassionate, active listener and making clear that I want conversations to be a dialogue. For example, I might say, “When we were talking earlier, I heard you say_____. I think you meant ______, but want to make sure I understood you correctly, because that statement made me feel ______.” I’ve found that it helps to use “I” statements to put on the onus on myself instead of someone else.

Overall, my candor has been a good thing. It has freed up mental and physical energy. It has allowed me to be a better communicator. It’s helped me to express what I need to without beating around the bush. For years of illness I worried, Well, if I go to that gathering, what will I do when I get overtired and need to leave early? Or, will there be food I can eat at that dinner party? Now instead of wasting energy on anguish, I simply state, “I’m really excited to celebrate with you, but just want to give you a head’s up that I’ll probably only be able to stay an hour or two” or, “I’m gluten-free, but don’t worry about me—I’ll bring a dish to share.”

And that’s it. There are no questions, there’s no wondering, there are no hard feelings. I set my parameters from the get-go, and then move along and have a good time. Like my friend, I’m glad for the change my illness has brought; it’s both liberating and empowering. Try it!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

natural vs pharmaceutical

Natural Isn’t Always Better: Getting Real About Pharmaceutical Medication

by Jennifer Crystal

Our society’s focus on living naturally has created a stigma around the “dangers” of pharmaceutical medications. But for patients with complex illnesses, like Lyme, it’s not that simple.

 

One of the most challenging symptoms of neurological Lyme disease is insomnia. I’ve wrestled with it on and off throughout my two-decade battle with tick-borne illness. During my very worst point, I was literally awake for weeks. In extreme distress, I cried that I didn’t want to die but couldn’t live another second if I didn’t sleep. My doctor prescribed a short course of a heavy-duty sleep medication to knock me out.

“Don’t take it,” a friend cautioned. “It’s such strong medication. Your body has the natural resources to get the sleep it needs. Try some lavender oil or breathing exercises.”

I was way past the point of being helped by natural remedies, yet I shared my friend’s concern. We’d both fallen under the common belief that natural is better. In a society where people are focused more and more on living naturally, a stigma has grown around the “dangers” of pharmaceutical medicine. The message seems to be that “natural is good, medicine is bad.”

But for patients with complex illnesses, it’s not that simple.

Sure, there are benefits to living naturally. It’s healthy to put organic food into our bodies and environmentally-friendly fuel into our cars. Yoga, meditation, and mindfulness practices are great ways to naturally center ourselves. In Lyme treatment, natural supplements often complement our medication regimes.

But natural methods are not always better. For example, some people use the mineral colloidal silver to combat infection. Just because it is a mineral doesn’t mean it’s safe, though. High levels of colloidal silver can permanently turn the skin blue, or cause liver damage. I know one patient who wound up hospitalized in renal failure. Another friend took colloidal silver for bronchitis, which turned into a severe case of pneumonia that required stronger antibiotic treatment than she would have needed if she’d taken conventional medicine.

When you’re fighting a multi-system bacterial infection, pharmaceutical medication is life-saving. Antibiotics kill spirochetes, plain and simple. Some Lyme patients are eventually able to wean off antibiotics once their infections are cleared up, and continue with homeopathic or naturopathic treatments. No one wants to be on medications any longer than their body needs them.

To avoid them when your body does need them, however, is dangerous. A new study by psychiatrist Dr. Robert Bransfield, published in the journal Neuropsychiatric Disease and Treatment, found that there were over 1,200 suicides per year1 related to tick-borne illness. Had I not taken the heavy duty sleep aid to get through the worst of my insomnia, I might have become part of that disheartening statistic.

I didn’t stay on the medication forever. In fact, I only used it for a few days. Then my doctor slowly moved me to a less potent medication, which worked in tandem with my neurofeedback therapy, a non-invasive treatment that relied on my body’s own internal signals to help me heal. My sleep doctor wisely reminded me that Western medicine helps you get through crisis, while Eastern medicine gets at the root of a problem and deals with more long-term effects. Both, he said, are necessary for proper healing.

This can be a hard pill to swallow for people intent on only going the natural route. Take the case of Luitha K. Tamaya, a shamanic practitioner who shunned conventional medical treatments—until she suffered post-partum depression. Her traditional techniques were not enough to see her through this condition. Reluctantly, Tamaya turned to pharmaceutical medication, “a decision that has since had surprising and beautiful results.” The medication helped her heal and, moreover, led her to a new understanding of her more natural beliefs: “I now understand that shamanism can encompass and enrich all of our modern sciences, instead of standing apart from them.”

I have come to the same opinion. What’s needed is a balance of Western and Eastern medical philosophies. I have been on a non-narcotic sleep aid for years. I’ve never had to increase the dose, and it has not caused any adverse side effects. “That’s effective use of medication,” my doctor told me, when I worried I’d been on the medication too long. I continue to complement this conventional treatment with neurofeedback therapy. Similarly, I continue to battle spirochetes and other tick-borne infections with a mix of pharmaceutical, naturopathic and homeopathic remedies.

Only you and your Lyme Literate Medical Doctor (LLMD) can decide what course of action is best for treating your one or more tick-borne illnesses. Your doctor should monitor your reaction to all treatments, whether they are pharmaceutical or naturopathic. As you decide together what’s best for you, just remember, natural is not always better.


1 Bransfield RC. Suicide and Lyme and Associated Diseases. Neuropsychiatric Diseases and Treatment. 2017 Jun; Volume 2017(13):1575—1587


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

politics lyme disease

Partisan Politics in Lyme Disease

by Jennifer Crystal

This past year we’ve seen our country’s politics become sharply divided, even though our politicians are supposed to be working together for the greater good of the American people. Watching the news, I’m reminded of the partisan politics of Lyme disease: the doctors occupy two divergent camps, the Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS).

 

Why would there even be two camps of diagnosing and treating Lyme? We don’t hear about that in cancer, or lupus, or rheumatoid arthritis. Sure, doctors may have different opinions on how best to treat these ailments, but there isn’t an overarching political divide that makes it difficult for patients to get an accurate diagnosis or proper treatment in the first place. Why is that the case with Lyme? How can a disease be so controversial?

Friends ask me this all the time. Until they go through it themselves—until they find a tick bite and have to talk about testing and treatment options with their doctors—it’s hard for them to understand the rift, and it’s equally difficult for me to explain it without giving what feels like a lecture. But it’s important for everyone to understand the basics of Lyme politics, so that when they do get a bite or symptoms, they can make educated decisions. As an informed constituent, I will try to provide a layman’s primer on the two “political parties” of Lyme.

IDSA’s guidelines for treating Lyme disease state that most cases can be cleared up with three weeks of antibiotics, and they do not recommend treatment beyond that point or recognize the existence of chronic Lyme disease, which I have long suffered from.

The problem is that not all patients are diagnosed correctly and immediately. Because Lyme tests only look for antibodies against the infection rather than the actual bacteria, they miss 30-50% of positive cases. Adding to the difficulty of diagnosis are the disease’s nebulous symptoms and their staggered manifestation throughout the human body over months or even years.

Unfortunately, doctors following IDSA guidelines rely heavily on these faulty tests. They also look for the “tell-tale” bull’s-eye rash, called Erythema Migrans or EM. However, this rash appears in less than 50% of all Lyme cases, and can also present in different forms and at different periods of the infection. My initial rash was a blotchy series of red dots on my inner forearm. Only years later did bull’s-eye rashes appear on both of my elbows.

Had I been accurately diagnosed with Lyme when I first discovered that initial rash, three weeks of antibiotics would likely have cleared up the infection.

But I wasn’t diagnosed for another eight years. Left untreated, the Lyme bacteria in my body replicated and spread, crossing into my central nervous system. By the time I was diagnosed, three weeks of antibiotics wouldn’t have touched such a severe, multi-systemic infection. Think of it like cancer: a small, Stage I cyst would require simpler treatment than metastasized Stage IV cancer. My infections were late-stage and therefore required more prolonged treatment.

Luckily, I found a Lyme Literate Medical Doctor (LLMD) who was able to treat me effectively. ILADS trains doctors in the complex diagnosis and treatment of Lyme and other tick-borne diseases. ILADS doctors understand the inaccuracy of testing, and therefore they rely on their clinical expertise to make a diagnosis, just as they would for a sinus infection or a cold. They recognize that Lyme often goes undiagnosed and untreated, and that late-stage Lyme requires longer treatment than the stringent IDSA guidelines allow. ILADS has written its own set of guidelines.

Both sets of guidelines include evidence-based research. Why, then, would there be such a discrepancy? To answer that, you have to look at who wrote the guidelines, and their conflicts of interests. As explained in the documentary Under Our Skin, some of the panelists who wrote the IDSA guidelines had connections to insurance companies and pharmaceutical corporations. For financial reasons, they had a vested interest in denying the existence of chronic Lyme disease, and arguing against the efficacy of long-term treatment.

Seeing my illness be denied for reasons that have nothing to do with my health is like watching politicians deny the science of climate change.

In today’s world, we have to dig through “alternative facts” and “fake news.” So what’s real and what’s fake, what’s right and what’s wrong in the Lyme divide? Only you and your doctor can make the best decision for you, but I can tell you my own facts:

Fact #1: If I had been tested for Lyme disease at the time of my tick bite, it might have been negative, even though I later had a CDC-positive test.

Fact #2: Had I seen an ILADS doctor first, he or she could have made a clinical diagnosis despite nebulous test results, and my co-infections could have been taken care of immediately. The next 20 years of my life would have been completely different: I would have had my health.

Fact #3: Had I seen an IDSA doctor at the time of my accurate diagnosis, eight years after the initial tick bite, I would have been given only three weeks of antibiotics, and I would still be very sick. My symptoms would have gotten worse. Today, 12 years later, I would still be bedridden, instead of in remission and living my life.

Fact #4: The treatment my ILADS doctor prescribed allowed me to get well enough to teach, write, ski and paddle board.

Fact #5: My ILADS doctor is well-versed in co-infections, and treated mine effectively. Had I seen an IDSA doctor, my co-infections in all likelihood would have been ignored.

Fact #6: My ILADS-based treatment for chronic Lyme has not been dangerous, as IDSA purports it to be. Long term antibiotics have had no adverse effects, and I have not built up immunity to the drugs. When I get an acute infection, I still take a normal dose of different antibiotics, and react to them just the same as anyone else would. My doctor is careful and cautious, checking my blood once a month to make sure my medications aren’t harming me in any way.

My hope for Lyme is the same as my hope for our country: that eventually we can have bipartisan support, in this case for the common cause of healing people who are very sick. Until then, it’s important for patients, doctors, and those who are one tick bite away from Lyme to arm themselves with the necessary information to make educated decisions, so they will not suffer as I have.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

lyme caregiver

Care Versus Overcare: A Fine Line

by Jennifer Crystal

Well-meaning Lyme caregivers can easily cross the line from care to overcare. Here are some simple rules to follow for both patient and caregiver.

 

Recently a friend was going through a difficult time. When she confided in me, I offered her a non-judgmental ear and lots of hugs. I gave advice when she asked for it. Being there for her made me feel good. Indeed, as Doc Childre and Howard Martin describe in The Heartmath Solution, “care inspires and gently reassures us. Lending us a feeling of security and support, it reinforces our connection with others. Not only is it one of the best things we can do for our health, but it feels good—whether we’re giving or receiving it.” [1]

But then, as my friend’s problem became more serious, I became deeply worried about her. Her situation was on my mind often, and I started checking in with her in an overbearing way. I was anxious about her all the time. While my feelings came from a place of love and concern, I had crossed into the dangerous territory of overcare.

Childre and Martin define overcare as “a burdensome state…when care from the heart is bombarded by niggling worries, anxieties, guesses, and estimations from the head.” They caution it is “one of our biggest energy deficits, and it’s at the root of a lot of other unpleasant emotional states, including anxiety, fear, and depression.”

The line between care and overcare is so fine that it can be hard to distinguish the two. However, it’s important to be able to do so, to protect our own well-being and our relationships. This is especially true—and difficult—for Lymies and their caregivers.

While Lymies may take care by following doctor’s orders, we can have a hard time enacting self-care, because we are plagued by feelings of guilt and shame. Instead of being gentle and patient with ourselves, we spend time and energy wondering when or if we’ll get better, beating ourselves up for being sick, and worrying that we are burdens. I spent years doing this. I see now that I was in a detrimental state of overcare, which hindered my ability to get well.

Well-meaning Lyme caregivers can easily cross into overcare, too. Many work tirelessly to care for their children, parents, siblings, or friends who are sick. That much care is greatly appreciated, but can easily be taken too far, to the point where the caregiver gets burnt out. Once they hit that point, they’re not helping the Lymie or themselves. Moreover, when a caregiver over-identifies with a problem, getting too involved and worrying to the point that their own mental health is affected, the patient may feel smothered or guilty. Everyone loses.

So how do patients and caregivers negotiate this fine line? Here are some lessons I’ve learned along the way.

For Lymies:

  • Be a friend to yourself. Be as kind to yourself as you would to a friend going through the same thing. Would you make that person feel guilty or ashamed for being sick? Give yourself the love, care, and understanding you would give to someone else.
  • Give yourself positive affirmations. Instead of berating yourself, try out thoughts like, I’m doing a good job. I’m going to get through this. This is not my fault. Sometimes this disease is two steps forward, one step back, but ultimately I am moving in the right direction.
  • Establish a good support network. This could include a therapist, friends, family members, other patients—anyone who understands your situation, gives you the empathy you need, and can talk through your worries and concerns.
  • Take care of your mental health and your physical health. Any long term illness causes situational anxiety and depression, and neurological Lyme can make them worse. Personally, seeing a therapist and treating my anxiety and depression have helped me to physically heal from Lyme.

For Caregivers:

  • Give yourself breaks. Even if you are the primary caregiver of a patient, make sure you have other people who can fill in for you so that you can take time off.
  • Make time for fun. Don’t just take a break to shower or go to the pharmacy. Take yourself out for an ice cream cone, see a movie, or do an activity you enjoy. You are not neglecting the patient by doing this; you are recharging your own batteries so that you can continue to care for your loved one.
  • Have a support network. Have a therapist, friend, or family member you can talk to about the emotional toll of being a caregiver. Try to direct your worries to this person rather than to the patient.
  • Ask. Never assume that you know what a patient needs. Ask specifically how you can best help them.
  • Don’t smother. No one likes to be fussed over for too long. Depending on your relationship with the Lymie, establish a routine that’s comfortable for both of you: maybe you talk by phone briefly when the patient is feeling up to it; maybe you send one check-in text a day; maybe you stop by once a week for a quick visit.
  • lyme patientRemember, it’s about the patient. As a natural giver, this is one I struggle with the most. My instinct is to help, but I have to first be sure someone wants my help. I have to see if the concern I’m giving is about my need to show I care, or if it’s about the person getting the care they need.

For Both:

  • Remember the airplane rule. On a plane, you have to put your own oxygen mask on first before helping others with theirs. First and foremost, you must always take care of yourself.
  • Ask yourself: is this care or overcare? Keeping yourself in check based on the definitions above will help you to give healthy rather than detrimental care. Checking myself when I went into overcare with my friend helped me to be a better friend to her and to take better care of myself.

[1] Childre, Doc and Martin, Howard. The Heartmath Solution. HarperSanFrancisco, 1999 (159, 165).


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

organize your medications

7 Tips to Organize Your Medications

by Jennifer Crystal

7 Tips to Organize Your Medications, from One Lymie to Another

 

Every Sunday morning, I pull out a big bag of pills and set about organizing my medications for the week. The bag holds over 20 bottles of medications; when I was at my lowest, that number was closer to 40. I spread the medicines on my kitchen table and then sort them into a box with compartments for breakfast, lunch, dinner and bedtime pills for each day of the week. A friend once witnessed this weekly ritual and remarked, “Wow, if you ever apply for a management position, you have great organizational skills to put on your resume.”

We laughed, but the level of organization it takes to manage Lyme medications is no joke. Most patients take at least as many pills as I do, and some also have to infuse intravenous antibiotics once or twice a day. There are different rules for each medication: some have to be taken with food; some can’t be taken with food; some can be taken with meals but not with food or vitamins containing certain minerals. Some, like the anti-malarial medications for babesia, have to be taken with fatty foods like peanut butter or mayonnaise. Then there is the timing: some pills have to be taken an hour before breakfast; probiotics have to be taken at least two hours before or after antibiotics, or the antibiotics will negate them. Some pills have to be taken right before bed.

When all is said and done, it doesn’t seem like there are enough hours in the day to take all of the medications at the proper times. You have to spend the day sitting in front of your pill bottles, trying to figure out which one to take next or to remember which ones you’ve already taken. This can be especially frustrating for Lymies compromised by fatigue, confusion and brain fog. It can make you want to throw your hands up and shout, “there must be an easier way!”

There is. While there isn’t yet one magic pill to cover all tick-borne illnesses, there are some ways to manage your medications, and your daily tasks, without losing your mind or missing a dose. Here are some strategies that have helped me:

  1. Get a weekly pill box: This box allows you to sort out your pills for various times of the day. You can fill it once a week, like I do on Sundays, and then you can put all those pesky bottles away and not worry about them for another seven days. These boxes help you to remember if you’ve taken your pills, too; if the lunch compartment for Monday is empty and it’s now Monday afternoon, then you know you’ve taken them. Keep the box out where you can see it, like on the kitchen counter. These weekly boxes are available at any pharmacy or online.
  2. Get a smaller weekly pill box for the in-between times: Some patients need to take pills more than four times a day. You can buy a weekly pill box that only has one or two compartments. Label it with the times you need, like “mid morning” and “mid afternoon,” and keep it right next to your bigger pill box.
  3. Get a palm-sized pill box for dining out: I used to sheepishly pull out a Ziploc bag at restaurants, trying to hide it under the table as I surreptitiously took my pills. No more. They now sell small, circular pill boxes that are discreet in design (mine is silver with a swirly pattern on top) and hold 4-5 large pills. I still have to pull it out at meals, but it’s a little less obvious (another option is to bring a water bottle in your bag and take the pills in the restroom). You can also pop this container in your bag so that you’ll have your pills with you when you’re out doing errands or going to doctor’s appointments. Some pharmacies sell them; you can also find them online and at many gift shops.
  4. Make a list of dosing instructions: Make one master list of when each pill needs to be taken and with what stipulations (with food, without food). Keep it with your pill bottles so that you can refer to it each week when you fill your compartments. If you have trouble reading or get confused by instructions, have someone read the instructions off your pill bottles and make the list for you. Learning these instructions can also help you determine the best time of day to take certain pills (for example, my antibiotic can’t be taken with a certain vitamin I take at breakfast, so I take it at lunch).
  5. Set alarms on your phone: It can be hard to remember to stop and take pills, especially ones that don’t go with meals. Set recurring alarms for the times of day you need to take medicine, including times when you need to take probiotics. It won’t even seem strange if the alarm goes off while you’re waiting in line at the pharmacy; everyone sets reminders on their phones these days.
  6. Keep bedtime pills on your night table: I keep two pill bottles on my night table: one for a pill I take to sleep, and one for a pill I have to take an hour before breakfast. It can be hard to remember whether or not I’ve taken them (especially if I take the early morning pill and then fall back asleep), so I’ve developed a system: Each night, I turn the bottles upside down. After I’ve taken the pills, I turn the bottles right side up. That way, if I fall asleep and can’t remember, I can look at which way the bottles are facing and know whether I’ve taken my medicine.
  7. If you are infusing antibiotics, have a family member take our your bolus from the refrigerator: When I was on intravenous antibiotics, my refrigerated bolus had to warm up for at least an hour before I could infuse. If I slept late, or forgot to take the bolus out when I woke up, my infusion time got pushed later than it was supposed to be. I started asking a family member who was up early to take out my bolus for me, so it would be ready when I came downstairs each morning. Family members often want to feel like they can do something to help, so they’ll feel good about having this tangible task.

In addition to managing medications, Lymies must also remember how they feel day to day, so that when they go to the doctor, they can give an accurate report. I used to stare at my doctor blankly and then say, “Well that’s hard to answer—it’s been so up and down…” So, I started keeping a daily log. Each day I record how I slept, how I felt, what I ate, what I did or couldn’t do, and any other pertinent information such as outside stressors. Before each doctor visit, I review my daily logs, charting patterns and flagging symptoms. Then I write up a synopsis and give it to my doctor before the appointment. This helps me to better articulate how I’m feeling, helps my doctor to better understand what my days/weeks/months are like, and helps us both to make informed decisions about my health. Since not everyone’s a writer, you can also give your doctor a bulleted list.

Having Lyme is tough, and organizing it can be even tougher. I give major props to Lyme patients who are keeping tabs on their medications and diets and daily routines while trying to survive this disease. Hopefully these tips will make your task a little easier.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every couple months, Lyme Warrior Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she is frequently asked.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

You’ve written about relapsing. How long does it take for a Lyme patient to relapse?

Many Lyme patients continue to feel well after stopping treatment, and my hope for them is that they will never relapse. But if Lyme disease is not fully treated, leftover spirochetes can start replicating, causing the infection to flare up again. While this can happen out of the blue, it is more often triggered by compounding issues such as stress or another acute infection. Stress releases cortisol in the body, which lowers immune function.

When the immune system is compromised, it is less capable of fighting leftover spirochetes. For some people, this happens right away—(usually signaling that they weren’t treated long enough)— while for others it happens months or even years later. If the body doesn’t have other defenses protecting it, such as antibiotics or nutritional and homeopathic supplements, and there is even one spirochete left, that spirochete is free to multiply at any time. For me, it took six months after stopping treatment to relapse. By then, I had moved and started a new job, and was in over my head physically, mentally and emotionally. My doctor said all the stress I was under was like “walking into a minefield of ticks.” Now, I stay on low-dose treatments to keep myself in remission, and I have not relapsed in ten years.

Only you and your Lyme Literate Medical Doctor (LLMD) can decide when you are ready to stop treatment and how you should continue to protect your immune system once you do.

What is the best test for Lyme disease?

Unfortunately, there is not yet an accurate and reliable test for Lyme, but Global Lyme Alliance is supporting research towards one. Current Lyme tests are indirect, meaning they only look for antibodies against the infection, not for the Lyme bacteria itself. It can take the body a while to generate antibodies, causing false-negative tests. The most common test is the two-tiered Western Blot and ELISA test, which is only 50-70% accurate. Some labs like Igenex do more sensitive testing, reading more bands for Lyme on their Western Blot than the standard CDC Western Blot. They also test for two strains of Lyme bacteria, called B. burgdorferi, rather than one. Other tests are the polymerase chain reaction assay (PCR), which detects the DNA of the Lyme bacteria drawn from a joint (usually the cerebrospinal fluid) and the C6-Peptide test (for more information on testing, click here).

Because testing is so inaccurate, both the Centers for Disease Control and Prevention (CDC) and the International Lyme and Associated Diseases Society (ILADS) note the importance of a clinical diagnosis, which can only be done by an LLMD. My tests were CDC-positive for both long and short-term infection, but I also had a thorough clinical assessment by an LLMD.

Do you know if muscle atrophy and nerve damage can be regenerated after Lyme treatment?

This is another question that varies per patient, but I can tell you that I personally was able to heal from both. I had very serious cases of Lyme, Babesia, and Ehrlichia that crossed the blood-brain barrier. A SPECT scan showed lesions on my brain and inflammation that blocked the left side from getting adequate oxygen. My muscles atrophied to a point where my previously rock solid ski legs jiggled like Jell-O.

Recovery was slow and unsteady, and did not happen solely due to antibiotic and antimalarial treatment; it also took a lot of work on my part. I had to really rest my brain while I was going through treatment, not pushing it to watch TV or read when those activities gave me brain fog. I had to learn my limits, pulling myself away from stimulating activities before I became overwhelmed. I still have to enforce limits today. I used to get paroxysmal limb movements—twitching of my nerves and limbs—and while that still happens occasionally when I am overtired, it is far less frequent than it used to be.

I worked assiduously at physical therapy to regain my muscle strength, but not until I had completed enough treatment to really be ready to exercise. Then I started very slowly: thirty seconds on a stationary bike. I worked up to a minute and thirty seconds, only to get a migraine and wind up back in bed for a week. Eventually, over the course of many months at physical therapy and many years on my own, I have improved to a point where I can now spend a morning skiing, paddle boarding, or canoeing. I recently kayaked three miles on the Boston Harbor. I still have to rest after I exercise and am no longer skiing moguls for eight hours a day, but I am also not as young as I once was. Nevertheless, I am happy to report that my rock solid muscles are back.

In addition to medicine and physical therapy, neurofeedback and integrative manual therapy helped me to regain cognitive and physical function. Don’t give up hope!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

A Lymie’s View from 39

by Jennifer Crystal

Birthdays and milestones can have a different meaning for Lymies and people with a chronic illness.

 

When I was six or seven years old, I asked a great-aunt how old she was. Winking at my grandmother, she replied, “I’m 39.” I understood 39 to be the last good year, the last decent age before it all started to go downhill; the year by which so many life goals are supposed to have been achieved. I didn’t worry too much, though, because 39 was always a long way off. By then I would be married, have a family, be settled in my career and stable in my life.

That was before I lost a decade to illness.

I turned 39 last month and it looks a lot different than I’d imagined, which is not to say it looks bad. My tick-borne illnesses have been in remission for years. I am writing and teaching, skiing and socializing. I’m living on my own. The view from 39 is certainly better than it was at 29, when I was in the midst of a relapse, back at my parents’ house, pulled away from my independent life for a second time.

That year I wrote in my journal, “I’m turning 29, and what do I have to show for it?” It was a sentiment I felt many times throughout the harrowing years of illness. Unable to work or even leave the house except for doctor’s appointments and trips to the pharmacy, I questioned my self-worth. Birthdays didn’t feel like celebrations; they were reminders of all that I wasn’t doing, all that I couldn’t do, all that I might never do. They were reminders of another year passing by while I struggled to survive.

What I didn’t understand then is that fighting tick-borne illness is an achievement of its own. Getting well was my full-time job, and I was working overtime. Though I often felt awful, I made strides. I was going to neurofeedback, integrative manual therapy and talk therapy appointments. I was taking all of my medications and supplements. Twice a day, I infused intravenous antibiotics and cleaned my own PICC line. I was working through the physical, mental, emotional and spiritual upheaval of being sidelined by illness, and that was certainly worthy of celebration.

I did not yet understand that success is not defined by a career, money or status. Of course, I wanted all of those things, and still think it’s important to support yourself through a job you love. That’s something I’ve worked towards in my thirties. But the fact that it wasn’t possible during the lowest point of illness did not mean that I have nothing to show for those years. I still had my character. I still had my values. I still had my sense of humor. And those qualities deserved to be celebrated.

Still, 39 is not what I expected it to be. I’m not married. I don’t have a family of my own. I am working hard but am not fully settled or stable in my career. I’m grateful for how far I’ve come, but I still want all those other things, and I’d be lying if I said I don’t feel some angst about not having them by this age. Most of my contemporaries are married with kids and mortgages and careers that allow for nice vacations. I love those friends and feel connected to them, but I’m not on the same track as them. My major detour puts me more on track with friends who are 29, because they are at the same point in their careers and personal lives as I am.

But the fact is, I’m not 29. As much as I can appreciate all that I went through in my late twenties and early thirties, I can’t get those years back. My body is aging. When I went skiing this year, I fell on some ice and remarked, “I don’t remember it hurting like this when I was younger. I would just get up and keep going.” I kept going this year, too, but spent the next day icing my sore spots and taking ibuprofen. I’m getting wrinkles around my eyes. Once in a while I pluck a silver hair from my head. My hands are getting veiny the way my mom’s and grandmother’s did at my age. I can’t blame those signs of aging on Lyme disease; I’m simply getting older.

The reality is that my biological clock is ticking. That scares me. But I’m also still holding out hope. During years of illness when I thought I might spend the rest of my life in bed, I nurtured a glimmer of faith, and it worked. I got better. Maybe not as fast as I wanted to, but it did happen. So I have to have faith that I will achieve all my other goals, too, even if they’re not happening in the time frame I’d always imagined.

If my great-aunt and grandmother were alive today, I might wink at them and say, “Maybe by the time I’m 40.”


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Fear of Lyme Reinfection

by Jennifer Crystal

Hoping you don’t get another tick bite and Lyme reinfection this spring.

 

This time of year always makes me happy: the tulips come out, everything blooms, and the world feels hopeful again. It also makes me nervous, because I know spring brings an influx of my worst enemy: ticks. Articles and newscasts from The Boston Globe to CBS warn that a warmer winter will make tick season especially bad this year.

“But isn’t the horse already out of the barn,?” a friend asked me when I voiced my concern. She meant that since I already have Lyme and babesia, what would be the harm in getting a new tick bite? A lot, it turns out.

Getting a new tick bite ranks up there with relapse in terms of my worst fears. My Lyme and babesia are currently in remission, well-controlled and well-maintained by specific medication, supplements, dietary restrictions, and lifestyle limitations. A new infection could spur a relapse, and engender new symptoms that I did not experience with my initial infection.  It could also re-infect me with ehrlichia, a co-infection I previously beat, or give me several new co-infections. One bite could send me back to square one.

I know the danger of this because I watched a friend go through it last summer. Like me, she had been in remission, and was out living her life: raising her children, taking spin classes, working and socializing. Then one day she sat on a blanket under a tree at her child’s lacrosse game, and a few days later, woke up sicker than ever. A tick had bitten her while she sat watching that game, reinfecting her not only with Lyme but with co-infections she’d never had before. She ended up in the hospital.

Besides the physical toll these new infections took on her body—she went from attending spin classes to grimacing in pain when a physical therapist tried to stretch her legs in her hospital bed—the illnesses also took an emotional toll. The isolation and pain of tick- borne illness can cause depression and anxiety, but those feelings are much worse when you’ve survived the illness before, tasted freedom and suddenly had it stripped from you again. My friend felt hopeless.

Who can blame her? Remembering the devastation of my relapse, I can only imagine how distraught I’d feel if I were to get a new bite, especially since there are so many new tick-borne illnesses on the rise. A recent story on CNN warns of a rise in tick-borne Powassan virus, a potentially deadly encephalitis. Symptoms can include fever, headache, difficulty maintaining consciousness, cognitive impairments and seizures. A recent NPR report speaks to a rise in newer tick-borne illnesses, such as anaplasmosis and Heartland virus. Other prevalent tick-borne illnesses include Bartonella, Borrelia miyamotoi, Bourbon virus, Colorado tick fever, mycoplasma, relapsing fever, Rocky Mountain spotted fever, Southern Tick-Associated Rash Illness (STARI), tick paralysis, and tularemia.

Fear of a new bite can make a Lymie want to hide. Short of that, here are some tips for preventing Lyme disease while enjoying the great outdoors. These are important for everyone to follow, whether you’ve already had a tick-borne illness or not:

  • Use insect repellent that contains DEET, or the more natural components of picaridin and oil of lemon eucalyptus, and treat clothing and outdoor gear with permethrin.
  • Carry repellent with you at all times. You never know when you’re going to be at a friend’s house and they’ll suggest going for a walk or taking their kids out to play.
  • Wear light-colored, long-sleeved clothing. Tuck pants into socks, no matter how geeky that sounds. Wear close-toed shoes.
  • Stay away from grassy areas, wooded areas, brush and leaves. Stick to the center of gravel and dirt paths. One patient said she’s so afraid of leaf piles on the sidewalk that she walks in the street. I do this, too! (Just make sure it’s safe!)
  • Do a tick check immediately after spending time outdoors, remember to look in tick hiding spots such as the groin, the belly button, behind the ears, and on top of the head. Do a check every night before bed.
  • Remember to check your pets, too! One man in West Hartford, CT recently pulled 30 ticks off his dog after a walk around the reservoir. Dogs tend to run into the woods and roll in the grass, and then they bring whatever they pick up into your home.
  • Shower immediately after spending time outdoors. If you have small children, be sure to bathe them and check them for ticks every single night. Kids are at greater risk of getting tick bites and associated illnesses because they are closer to the ground and spend more time playing outside than adults.
  • Put clothes in the dryer as soon as you come inside for 10-15 minutes. High heat kills ticks.
  • Carry a mini lint brush with you, and periodically swipe it over your body and clothes. Remember that ticks are sometimes hard to see so they may get picked up and be noticeable on sticky lint paper.

Most important, we can’t let ourselves be blocked by fear, because then the ticks have won. Spending time outdoors will always make me nervous, but I believe that using these preventive measures will keep me safe. I wish everyone an enjoyable and tick-free season!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Lyme Moms: We Salute You

by Jennifer Crystal

A tribute to the mothers of children with Lyme disease and mothers with Lyme disease, out there on the front lines fighting for awareness, research, treatment, and validation.

 

When I was undergoing treatment for Lyme, I attended a local support group. Most of the members were parents. Some were trying to raise families while battling the disease. Others were healthy but were raising children who had tick-borne illnesses. Some of those children had been infected in their own backyards. A few families had more than one child with Lyme. Just as one child would start to get better, another would fall ill; for those families, beating Lyme was like playing dominoes. Listening to their stories made me realize how much more complicated their battles were than mine. Every Lyme patient suffers, but Lyme families face additional challenges.

I realized it is the mothers of Lyme kids who are often making the biggest difference. They’re on the front lines fighting for awareness, research, treatment, and personal validation. They’re fighting for recognition of an illness that is often dismissed as nonexistent by schools and pediatricians. I have heard horror stories of parents being questioned by school officials as to whether their child was truly sick. One mom said the Department of Children and Family Services had threatened to take her daughter away because the child had missed so much school. It’s hard enough for these kids to miss out on the academic and social events of their age. It’s hard enough for their parents to understand their children’s symptoms and get them proper treatment. But to then have the factual basis of the crisis questioned!

Even parents who find ticks or rashes on their children and seek immediate treatment are questioned by pediatricians who aren’t Lyme literate. A friend who found an embedded tick on her two-year-old son was told by the pediatrician not to even bother having the child or the tick tested, but to “wait and see” if the child developed symptoms. Lyme symptoms can be nebulous—and difficult to express, especially by a two-year-old—so waiting to see would have put the child at greater danger than giving him prophylactic antibiotics. Fortunately, the mother was well-informed and she insisted her son be given treatment.

These mothers persist because they love their children. As Staci Grodin, Vice Chair of the Global Lyme Alliance and a Lyme patient herself says, “Education is key. We must educate moms and kids on prevention so months and years don’t go by with any child suffering. Educating schools, camps, and other places where our children learn and play is also critical to keeping everyone safe.”

It isn’t easy for parents to fight this good fight when they’re the ones who are sick. But many like Grodin do. She was bitten by a tick in college and it was a couple years before she was diagnosed with Lyme and its co-infections. She’s wrestled with ups and downs since then, all while raising a family and working to advance Lyme education and awareness.

Some parents want to join this fight, but can’t because they are completely bedridden. They struggle with feelings of guilt and shame when they can’t be involved in their childrens’ lives the way they want to, so the bulk of the parenting falls to the spouse. Other parents have to navigate giving equal attention to both healthy and sick children. Lyme doesn’t just wreak havoc on a body; it can also wreak havoc on a family.

There is also the question of getting pregnant while battling Lyme. Research shows that the bacteria can be passed to the fetus, so both the mother and the baby’s health are at risk. In the documentary Under Our Skin, one patient suffered miscarriages due to Lyme and the fetuses tested positive for the disease.

Grodin remembers, “When I got married and wanted to become a mom in 2002, I weighed my options very seriously about what would be the best way to ensure the baby didn’t get Lyme and the other co-infections I had.” Grodin’s doctor advised she do shots of penicillin for 10 months. “I have three children, so as you can imagine that’s a lot of shots!”  All of Grodin’s children were tested at birth, and thankfully were Lyme-free.

There is always the risk that Grodin’s children could get their own tick bites. “As a mom, I’m constantly concerned about Lyme disease prevention and checking my kids for ticks,” Grodin says. “I make sure my own back yard is as tick free as possible, and I use tick control to ensure this is the case. I use permethrin on my kids’ clothing, backpacks, jackets and so forth, and have educated them to do self-checks as well. My kids still enjoy all of the field sports and go off to sleep away camps and do all of the fun kid stuff that they want.”

This Mother’s Day, I will raise a toast to Grodin and to all the moms who are Lyme Warriors. To my friend who insisted on treatment for her son; to my own mother, who makes me meals and talks me down when my symptoms flare; to my stepmother, who comes with me to my doctor’s appointments, takes notes, and asks great questions; to all the moms who are suffering from Lyme, or whose kids have it; to the moms who are fighting for awareness and prevention; and to the friends and caregivers who offer maternal love and support to patients.

We couldn’t do it without you!

Who is your #MyLymeHero?


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every couple months, Lyme Warrior Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she is frequently asked.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

I started treatment for Lyme, and now I feel worse! Is this normal?

Yes. As strange as it may sound, this is actually a good sign. It means the medication is working. What you’re experiencing is called a Herxheimer reaction: the antibiotics are killing off bacteria faster than your body can eliminate them, making you feel worse before you feel better. While Herxheimer reactions—often referred to as a “herx”—are tough to deal with, they usually don’t last too long. The first time I had one, my doctor told me to “stay the course”, and I’m glad I did. If your herx is unending or unbearable, you may want to talk to your doctor about “pulsing” your antibiotics—taking short breaks from them, or changing them.

I have mostly had neurological symptoms, but now I suddenly have fatigue and joint pain. Why did that happen?

Lyme bacteria, called spirochetes, are tricky. They spiral away from antibiotics in an effort to evade the treatment. This means they might burrow into new places, or they might move deeper into places they’ve already been. Without antibiotics, though, the spirochetes will eventually get to all those places and then some, without anything fighting them off. Eventually the antibiotics will win out, but in the meanwhile, you may experience new symptoms. Fatigue is especially common, because your body is laden with bacteria that is being killed off (a good thing!), and because your body is working so hard to fight the infection.

Spirochetes also love to hide out in scar tissue. If you’ve had an injury to a particular joint, you may feel more swelling or pain in that area than others. I tore my ACL a few years before I started Lyme treatment. The rehabilitation took much longer than expected because Lyme was living in the scar tissue around the knee. I’ve also had intense migraine headaches over my left eye. I had several surgeries on both eyes as a child, and my doctor suspects I have more scar tissue around the left, causing focalized pain.

Be sure to tell your doctor about new symptoms—especially if you develop neurological impairments that you never had before, as this could be a sign that the infection has crossed the blood-brain barrier. It helps to keep a daily log so that you can track your symptoms and accurately report them to your doctor.

I have spoken with many people with chronic Lyme disease who were on years of antibiotics and did not do well until going a natural route. Do you think it’s possible to treat Lyme disease without antibiotics?

My short answer is no. The long answer is that everyone has a different experience and reacts differently to treatments. Some people only get well with antibiotics. Some people start on antibiotics and then add or switch to naturopathic treatments. As I’ve said in the past, it all depends how long a patient went undiagnosed, whether their Lyme is complicated by co-infections, whether the infections have crossed the blood-brain barrier, and how a patient’s immune system responds to various treatments. Only you and your Lyme Literate Medical Doctor (LLMD) can decide the best course of action.

In my experience, the naturopathic route alone did not treat Lyme. For me, it took a combination of Western and Eastern modalities. Lyme is a bacterial infection, and antibiotics kill bacteria. I would not treat other bacterial infections, such as pneumonia or a urinary tract infection, solely with naturopathic remedies. I apply the same theory to treating Lyme. I take homeopathic supplements to help boost my immune system, replenish nutritional depletion, and augment the work of pharmaceutical medication. I also rely on adjunct therapies such as neurofeedback and Integrative Manual Therapy.

However, none of these therapies would have helped on their own. Before being diagnosed with Lyme, I was seeing a naturopathic physician who treated me with Chinese herbs, dietary restrictions, and acupuncture. After two years of these treatments, I showed only nominal improvement. That was because there was an underlying bacterial infection that wasn’t being adequately treated. It was the naturopathic physician who recommended I see a Lyme specialist; he knew he’d maxed out his ability to help me, so he sent me to someone else who could. That, in my opinion, is the sign of a good doctor.

How do you live out in the great outdoors without fear of reinfection? My fear of this is all-consuming. I used to be an outdoorsy person, and now I’m scared to walk on grass. A sidewalk littered with leaves makes me so overwhelmed that I’ll walk in the street.

This a great question that merits its own post, coming soon. Stay tuned!


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com


 

 

 

Fighting ‘Fight or Flight’

by Jennifer Crystal

Does stress impact your Lyme symptoms? How do you react?

 

For a few days last week, I had trouble napping. This is usually a result of being physically and neurologically overtaxed, making me too tired to sleep. Frustrated and cranky, I got up after a couple hours and moved to the couch. I opened the windows, let the fight offspring air tickle my feet, and looked out at the budding trees. I put on some quiet music and lit a scented candle.

Sounds like a relaxing scene, right?

Instead of relaxation, I felt a familiar and unpleasant sensation creeping through my body. My breathing shortened. My legs felt jumpy. My thoughts raced. My heart rate quickened and my mouth grew dry. My whole body felt suddenly restless, even though I was so tired. As my Integrative Manual Therapist later confirmed, my limbic system had gone into “fight or flight” mode, defined by dictionary.com as “the response of the sympathetic nervous system to a stressful event, preparing the body to fight or flee, associated with the adrenal secretion of epinephrine and characterized by increased heart rate, increased blood flow to the brain and muscles, raised sugar levels, sweaty palms and soles, dilated pupils, and erect hairs.”

If I was lying on my couch relaxing, what was the “stressful event” to which I was reacting? For me, it was two-fold. First, my neurological system was stressed because it hadn’t gotten the sleep it needed.  Inadequate sleep is extremely stressful to the body. Whether I was lying on the couch or in a hammock by the beach, my overtired brain was bound to cause a fight or flight reaction.

Second, lying on the couch when I was so tired reminded me of all the times I’d been sacked out during the worst periods of my health journey, especially during my 2007 relapse. During those times I was terrified I would never get better, and the fear often manifested in a fight-or-flight response. While I wasn’t consciously thinking of that relapse after my recent napless afternoons, my subconscious must have. Remembering previous trauma, it immediately put my body into the same reaction it did at the time, in the same way that post-traumatic stress disorder gives victims flashbacks. The physiological basis for my fight or flight reaction was neurological Lyme disease, but it was exacerbated by lack of sleep and a traumatic memory.

A fight or flight reaction sounds complex, but is actually quite primitive. As Peter A. Levine explains in Waking the Tiger: Healing Trauma, “If the situation calls for aggression, a threatened creature will fight. If the threatened animal is likely to lose the fight, it will run if it can. These choices aren’t thought out; they are instinctually orchestrated by the reptilian and limbic brains.”

The Lyme patient, feeling threatened by the illness and all the neurological and physiological responses to it, has this same instinctual response. And while this makes perfect sense, it can be extremely frustrating to deal with, especially when all we really need is rest. With no energy to fight or stamina to run, we are stuck in park on our couches while our nervous systems race in overdrive.

So what’s a Lymie to do? Here are some tips that have helped me cope:

  1. Remind yourself that this is normal. Remember that such a response is instinctual and out of your control. You can, however, control your reaction to it. Simply remembering that this is your body’s natural way of protecting you may help to alleviate panic, which will help the response to pass quicker.
  1. Keep still. When the choices are fight or flight, your instinct is often to get up and run away. That’s only going to make things worse. It certainly can help to move to another spot (a different couch or chair, or a comfortable recliner), but don’t force your body to go for a walk or move in ways it isn’t capable of in an effort to “escape” the situation.
  1. Concentrate on your breathing. There are lots of great techniques to help you steady your breathing. One that works well for me is to breathe in through my mouth and imagine that breath filling up my belly; hold that breath in my belly for a count of three; then slowly release it back out through my nose for a count of five. Do this five to ten times.
  1. Hydrate and eat. Drinking water and eating a healthy snack can help stabilize your blood sugar, and your overall system. I also like to have some calming tea, such as Celestial Seasonings Sleepytime or Yogi Calming.
  1. Use neurofascial processing. Developed by Sharon Giammatteo, Ph.D., neurofascial processing uses light touch to help the body heal. In her book Body Wisdom: Light Touch For Optimal Help, Giammatteo states, “When you are frightened, severely stressed, or weakened due to illness or injury, your limbic system [within the cerebral cortex of the brain] will respond.” One simple way to calm your limbic system is to hold one hand across your forehead, above the bridge of the nose, and one hand over your kidneys, behind your back. You can do this while you’re lying down. Hold the position for at least 15 minutes. It may sound kooky, but I promise you, it helps! Worst case, your arm will fall asleep—and maybe even you will, too!
  1. Do some light reading. When I’m overtired, I don’t have the neurological capacity to read or watch TV, but sometimes skimming something light—even though I’d rather be sleeping—helps my brain and body relax.
  1. Call a friend. Part of the problem of fight-or-flight for Lymies is that we’re often alone when it happens, and that can be scary. Call or text a friend to help talk you through it, or to tell you a funny story.

I tried to follow my own advice last week when I went into fight-or-flight, and I am happy to report that within a few days, I was napping normally again!

Next week I will be answering questions from readers. Do you have a question about Lyme? Email me at jennifercrystalwriter@gmail.com.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

 

 

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Taking Lyme One Day-Minute-Second At A Time

by Jennifer Crystal

How do you manage Lyme symptoms that can change day by day, minute by minute, second by second?

 

Last weekend in Boston we had a nor’easter. I wondered if it was just a bad April Fool’s Day joke, because come Monday morning the sun was shining, the snow was gone and the temperature was climbing towards 50 degrees. Looking out my window, I thought of the old adage, “Don’t like the weather in New England? Wait five minutes and it will change.”

This maxim applies to Lyme disease, too.

When I was really sick, people would say to me, “Just take it one day at a time.” But that wisdom didn’t apply, because my symptoms could run the gamut in the course of a day. I might wake up exhausted from a horrible round of nightmares and feel washed out and foggy for the morning, but then I’d perk up after lunch. Or I could wake up feeling “relatively” good—meaning well enough sit up for a couple hours typing emails or even drive into town to run errands. That last part was dicey, though, because I never knew when I would run out of steam. Some days I might feel okay at breakfast and intend to go to the pharmacy afterwards, but would then suddenly have to crawl back into bed as soon as I finished infusing my morning antibiotics. Sometimes I made it out for the errands but then crashed halfway through. I remember sitting in the dressing room of a store that was five minutes from my house, crying because I’d hit a wall and didn’t think I could go through with the purchase, let alone drive home. I was only trying to buy underwear! I remember thinking, “If I can’t even do this basic errand reliably, how will I ever live in a normal life?”

I had to learn that Lyme isn’t one day at a time. Lyme is one hour at a time, one minute at a time, sometimes even one second at a time.

The bad news about this is that I had to accept that those periods of wellness might not last. The good news, though, was that it helped me to hold on through the bad periods. I used to chuckle to myself as I lay in bed thinking, “You don’t like this? Wait five minutes, and it will change.” I didn’t always feel better in five minutes, but the worst periods did eventually pass, and it helped to remember that my illness could be as mercurial as the weather.

It also helped to alleviate the pressure of thinking about how to get through a whole day all at once. If I woke up feeling awful, the prospect of twelve hours of such torture was unbearable. But if I said to myself, “You just have to get through the next hour,” the pain and fatigue and anxiety and brain fog and word iteration became slightly more manageable. I was taking control of my emotional reaction to my symptoms, even if I couldn’t control the symptoms themselves.

On the flip side, I had to recognize that an hour feeling good might not stretch into the next hour. This was frustrating, of course, but it also helped me to be present. I would say to myself, “I feel good right now. It’s only 9 a.m. and I might feel awful by 11 a.m., but I’m okay this minute and am going to take advantage of it.” With Lyme disease, there’s never a minute of wellness or energy to waste.

Eventually, those good minutes and good hours started to stretch. They became more frequent. Now in remission, I generally know that my energy will be good in the morning, wane in the afternoon, and pick back up in the evening. Holding on through months of terrible hours, of terrible minutes, of terrible seconds, got me to a point where I can now enjoy months—years—of good days.

If you are at a point where you are surviving Lyme by the second, wait it out. Take the disease in whatever increments you can. And know that no matter how many surprise storms might there might be, spring eventually arrives.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Short-Circuited by Lyme Disease

by Jennifer Crystal

Understanding how everyday functions can be short-circuited by Lyme disease.

 

During my 2007 relapse, I was sent to a state-approved doctor who was supposed to decide if I really had Lyme disease, even though it had already been clinically diagnosed by a Lyme-literate doctor and confirmed by CDC-positive blood tests. I was nervous about this basic 15-minute physical exam that would determine whether or not I deserved disability benefits. I told the doctor all of my symptoms, but I wasn’t sure he believed me. My eyes, ears and lungs checked out okay, so I worried he would write me off as healthy.

Then he asked me who the President of the United States was.

Crickets…

Cheeks burning red, I stared at the doctor. Seconds passed, then minutes. For the life of me, I could not come up with George W. Bush. Of course, I knew he was the President at the time. I was a college-educated woman with a background in politics and a good understanding of current events, despite being so sick. But in that moment, my mind went blank.

These delayed reaction times are common with neurological Lyme disease. When Lyme crosses the blood-brain barrier, the bacteria invade the brain and central nervous system, causing operational slow down. I think of the brain as a system of wires: neurons and their connectors, synapses that when working properly allow us among other things to accurately communicate and move. That doesn’t happen, though, when there are bugs in the brain. I sometimes imagine the spirochetes chewing on the wires, fraying and sometimes ruining them like a phone cord getting caught in a vacuum.

Lyme patients can’t just buy a new phone cord; we must rely on antibiotics to fix our faulty wiring. In the meantime, we’re short-circuited, which can manifest in myriad ways: brain fog, word iteration, word mix-ups, tremors, mini seizures, sleep disturbances and, as shown in my embarrassing silence at the doctor’s office, delayed reactions.

Sometimes I joke that I need to do a Google search on my brain to come up with an answer. It might pop up in a few seconds, a few minutes, or not until hours or days later.

Lyme victims’ bodies suffer similar delays. When we’re attacked by infection, we feel sluggish and run down; think about how tired and achy you feel when you have the flu or bronchitis or a sinus infection. The same is true for Lyme, except the infection is not localized. It’s burrowed in bones, muscles, cells, and joints, and can spread to every bodily organ. Lyme weighs the body down like thick molasses, causing everything to run more slowly. I remember having my reflexes tested during my first appointment with a Lyme literate doctor. The physician’s assistant tapped on my left knee. At first, there were only crickets; my leg did not respond. Then, a few seconds later, it shot up the way it was supposed to.

That same knee had given me trouble years earlier, before I knew I had Lyme and other tick-borne infections. I’d torn my ACL skiing and the rehabilitation had taken much longer than expected. I was working overtime at physical therapy, but when the orthopedic surgeon examined my knee two months after surgery, he proclaimed, “This is awful. Your leg should be much stronger than this by now. Clearly you aren’t doing your exercises.”

In fact, I was doing more exercises than required, over-achiever that I am. But there was another important fact I didn’t yet know about: Lyme loves to hide in scar tissue. The spirochetes, not my lack of effort, were delaying my recovery.

Once I was accurately diagnosed with Lyme and co-infections, my recovery was tedious, as it is for many patients. My body is slow to metabolize medications (when I had the ACL surgery, the epidural took so long to wear off that I was almost admitted overnight; when I had my wisdom teeth removed, the twilight anesthesia didn’t kick in until after the procedure was over!). It takes me much longer than the average healthy person to recover from acute illness, too.

Everything is slower with Lyme. But it does still happen…just on delay. Even my disability benefits came through, years after I initially applied.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Getting Involved: When Your Intention Says Yes, But Your Body Says No

by Jennifer Crystal

You’re feeling better and want to get involved, but your chronic illness has other plans.

 

Last January, a friend asked if I had attended a recent local Women’s March. I shook my head sheepishly. “But that doesn’t mean I don’t care,” I quickly said.

This is an exchange I’ve had many times. I often feel like I need to explain the difference between wanting to get involved and being able to. No matter your political leanings, the last few months have been unsettling for everyone. There have been so many causes and marches and ways to become engaged that even the most energetic of us has felt overwhelmed. For those suffering from Lyme and other debilitating illnesses, that feeling is amplified by the fact that involvement in daily life, let alone activism, is often too much to handle. When you are too physically or neurologically overtaxed to cook meals, talk on the phone, or read books, civic engagement seems out of the question. And that can lead to feelings of guilt, shame and selfishness.

Wanting to watch TV or hang out with friends and not being able to do so is frustrating. Wanting to get involved in something bigger than ourselves and not being able to takes those feelings to a new level. I remember, when I was completely bedridden, someone said to me, “Why don’t you volunteer, to get involved in something besides being sick?” What that person didn’t know was that if I could have volunteered, I certainly would have. If I could have worked part-or-full time, I would have. If I could have done anything that made me feel connected to the world at large, engaged in my community, or occupied with something bigger than my illness, I would have. But I could not.

I had to get well before I could do any of those things. It comes back to the old oxygen mask analogy: you have to secure your own mask on an airplane before helping someone else with theirs. This rule feels counterintuitive because our desire as humans is to help others first. But we can’t help anyone if we’re not breathing. Having Lyme or any of its co-infections is like being without the oxygen mask. There is very little we can do for ourselves, much less others without it.

Once we are breathing again, though, we still may not be able to participate in events and activities the way we’d like, but that doesn’t mean there aren’t other ways. Though I am no longer housebound, I have limitations that prevent me from participating in events like political marches. Big crowds and large noises grate on my neurological symptoms. Standing for hours tends to make me tired and cranky. No matter how much I care about a cause, I have to set boundaries on involvement to protect my health.

Last January I asked myself, if I want to make a difference but don’t have the capacity to do so in a traditional way, what other ways are there?

In the world of the internet, it turns out, there are many ways to get involved right from your couch. I discovered an online Disability March, which, as described on its website, is “a caucus of the Women’s March open to persons with disabilities and their advocates. The group began as a ‘virtual’ march of disabled activists who could not take part in the physical Women’s March in January 2017 but nevertheless  needed to have their voices heard, and has evolved to allow disability-rights activists to come together to share opportunities for the members to engage in various aspects of activism related to disability rights and healthcare.” There is also the Facebook group “ACA Stories: How Obamacared for Me”, which is a space for stories about the positive ways in which Americans’ lives have been touched by the Affordable Care Act.

If you care about these particular issues, you can share a quick story with one of these groups, and know that you’ve helped to make a difference. If you can’t type, how about asking a friend to post for you, or to help you research other causes and groups that you can participate in virtually? Whatever it is you want to get involved in, it’s likely an online group or app already exists to fill the need.

And if you’re not yet well enough to get involved, be gentle with yourself. You are currently involved in the most important cause of your life: reclaiming your health. Once you’ve done that, you can broaden your reach. In my view, there’s no better activist than one who has been in the trenches. If you’ve fought for your life, you can fight for anything.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

What’s Luck Got to Do with Lyme Disease?

by Jennifer Crystal

For many Lyme disease patients, luck starts with getting an accurate diagnosis.

 

Whenever someone hears my story and says, “Wow, you’ve really been through the wringer,” I respond, “Yes, it was a long haul, but I feel really lucky.”

Eight years of misdiagnosis, three years in bed, one year on intravenous antibiotics, and countless missed life events doesn’t seem so lucky, but that’s not how I look at it now. I’m lucky that I was diagnosed at all. I’m lucky that I fell in the hands of a good Lyme-literate doctor (LLMD) and got treatment. I’m lucky that I lived in a state where insurance covered that treatment.

So much of Lyme disease is just luck, good and bad.

My medical trajectory started with the bad luck of being bitten by a tick. I was in the back woods of Maine. I wasn’t focused on prevention and wasn’t wearing bug repellent, and I definitely didn’t know to check for ticks. These are factors I could have better controlled, which might have kept that original tick away from me. Then again, I have lots of friends who spent similar summers in those woods, who were similarly careless, who were never bitten by a tick. So even if I had been more careful, my being bitten may have just been bad luck. The fact that my tick also delivered three co-infections in addition to Lyme was even worse luck.

Recognizing the role luck plays in Lyme disease lets us off the hook a little. I’m not saying we shouldn’t be vigilant; anyone who spends time outdoors must be. We need to take the best care of ourselves we can. We need to follow the protocols our doctors give us. When those treatments don’t work, or when we aren’t comfortable with our doctors, we need to do something about it: we need to find new physicians, or work with our practitioners to try different mixtures of medications. We need to figure out what lifestyle changes we can implement and adjunct therapies we can try to best improve our health. We need to do everything in our power to get an accurate diagnosis, to get proper treatment, and to fight for what we need.

And then we have to let go and realize, like to stoics, that the rest of it is out of our control. The rest of it is up to luck.

Patients who get an early accurate diagnosis are lucky. Patients who respond well to treatment are lucky. But all of us have some bad luck along the way. Some of the antibiotics I tried didn’t work, or had side effects I couldn’t tolerate. One made me so nauseous I spent a week running to the bathroom. Another caused gallstones so big that I had to have emergency surgery. It took a long time to find the right “cocktail” of medications, and even then, I had bad patches. I still have them, especially when I change a medication or hit a stressful period in my life.

But still, I am getting better. So in the larger picture, I consider myself lucky.

The most important thing is to get an accurate diagnosis, and the best way to do that is to see an LLMD. Patients write to me all the time with questions and fears, wondering if they’ll ever get better. If I read that they’re already seeing a Lyme specialist I breathe a sigh of relief. I know they are in good hands, and the best I can do is wish them good luck on their journey.

If you need help finding an LLMD, please click here. Then know that no matter how hard the road has been, no matter how hard it might be, luck is likely on your side.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Fear of Relapse

by Jennifer Crystal

Is Lyme disease ever really gone from your body? Relapsing is a constant reminder and reality that the bacteria are still lurking.

 

I am writing a memoir about my journey with chronic tick-borne illness. I avoided work on the manuscript for the last month not just because I was busy, but because I was scared. I’d hit the point in the story leading up to my 2007 relapse and I was terrified to write about it. This isn’t to say other parts have been easy to write; it can be difficult to revisit the angst and pain surrounding crushing fatigue, Herxheimer reactions, and migraines. That relapse looms as the very worst part of my whole journey. Ten years after that low point, relapsing is still my worst fear. It’s a worry many Lymies share.

Writing about the relapse meant I would have to confront that experience head-on. I shared my concerns with a writer friend, who asked what a relapse would look like for me. She hadn’t known me in 2007, and though she’d heard stories of what I’d gone through, she didn’t know the whole story of that period. Had it happened out of the blue? Had something caused it?

Lyme relapse can happen spontaneously, simply because all it takes for symptoms to recur is one dormant spirochete to start quietly replicating in the bloodstream. It’s possible that a Lymie could spend his or her days in a hammock on the beach and still relapse, because we can’t control what leftover spirochetes will do, the same way a cancer patient in remission can’t control when cancer cells start metastasizing again. That said, there are other factors that tend to contribute to Lyme relapse and we do have some control over them.

Because I had been feeling better, I stopped antibiotic treatment in summer of 2006. I continued to do well for several months, regaining so much strength that I was able to do a full workout at physical therapy. I was employed as an editorial assistant for a magazine, and was writing my first book. I still had some limitations, but I felt much better than in my bedridden days, and it seemed I would only continue to do so.

In November 2006, I moved to Vermont. I had been living in Connecticut with my parents for two years, and was ready to regain my independence. Instead of taking a small step, such as moving out on my own in their town, I rushed off to the outdoorsy environment I craved. But I wasn’t ready for that environment, and I didn’t realize that until I was there, five hours from my family and alone. I was not yet ready to ski, especially since my energy was now being spent on chores like food shopping, which my parents had taken care of in Connecticut. I knew how to fend for myself—I’d lived own my own in Paris and Colorado—but I didn’t have the physical stamina to do so in Vermont, not on top of taking care of my health and working. Very quickly, my fatigue returned.

I did my best to push through it, because work had suddenly picked up. On top of my usual writing and editing responsibilities, I was tasked with a huge research project that was far too taxing for a brain compromised by chronic neurological Lyme disease. It wasn’t long before I started experiencing brain fog, insomnia and anxiety again.

Then the muscular and joint aches came back, making it hard to type, and then the migraines, which felled me for whole days at a time. I didn’t have the energy to do laundry or cook, much less run errands. I saw myself headed back to the bedridden state I thought I’d left for good, and the mere idea of that terrified me. I became anxious about that possibility, anxious about not getting my work done, anxious about not being able to support myself, anxious that I wasn’t enjoying the Vermont lifestyle I’d envisioned. Stress, it turns out, is a leading factor in Lyme relapse.

“Getting that stressed out is like walking into a minefield of ticks,” my doctor told me when I called about the resurgence of symptoms. Stress causes a release of cortisol, which can speed up the reproduction of Lyme bacteria. The big move, the overload of mental work, the physical fatigue and the anxiety all created the perfect storm for me—especially because I was no longer on antibiotics. My system had no defense against the spirochetes that came raging back to life, replicating at such a rate that by February 2007 I was back in Connecticut at my parents’ house.

I could not stand the fact that I’d touched health, freedom, and independence, and then lost it all again.

I restarted treatment. It was a long, wobbly road, but eventually I battled my way back to remission once more. This time I took baby steps, moving just a few minutes from my parents, taking on smaller part-time jobs, really pacing myself, ever trying to ward off another crash.

I’ve been working to fend off relapse for a decade now. Even though I’ve gotten healthier and stronger—I moved to Boston, went to grad school, published my first book, started teaching, and started skiing—and even though I have a much better maintenance plan in place, I still fear relapsing. In a way the fear is good, because it keeps me on my toes;  it forces me to take care of myself, because I know how severe the consequences can be if I don’t.

When I explained all of this to my writer friend, she said, “Maybe writing about the relapse will be empowering. You’ll feel like you’re taking control over it.” Dubious, I gave it a try. To my surprise, the words have been flowing. I’ve written three chapters about my Vermont downfall. While I haven’t yet tackled the lowest point of my relapse, I’m getting closer to it. I’m learning that the best way to deal with fear is to grab it by the horns.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every couple of months, Lyme Warrior Jennifer Crystal will devote a column to answering your questions. Here are her answers to some frequently asked questions she has recently received.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

How long did it take for you to get better?

I wish I could give a magic answer to this question. Unfortunately, every case of tick- borne illness is different. It depends whether you have co-infections, whether the illnesses have crossed the blood-brain barrier, how long you went undiagnosed, and how well you respond to treatment. I went undiagnosed for eight years, and Lyme had crossed into my central nervous system. I also had Babesia, Bartonella, and Ehrlichia. For me, it took a year of intravenous antibiotics, as well as oral anti-malarial medication. I suffered a serious relapse a few months after stopping medication, and it took another couple years of oral treatment to battle back into remission. I have been steadily improving since then. In 2007 I was bedridden and hopeless. By 2008 I was living independently and freelance writing; by 2011 I moved to Boston and attended graduate school full-time; by 2014 I finished school and published my first book. Now I am writing, teaching, skiing, paddle boarding, recumbent biking, canoeing, socializing and living a great life with moderate limitations. I am still on a low-dose antibiotic as well as many homeopathic remedies and supplements. My health is continually improving. I don’t know how long it will take for you to get better, but I can tell you that there is hope.

What medicine and/or supplements did you take?

Because every case of tick-borne illness is different and individualized responses to treatment vary, it won’t help for me to tell you about my specific protocol. I can tell you that for me, a blend of Western and Eastern modalities did the trick. I combined antibiotics and antimalarial medications with supplements that replenished the nutrients depleted by Lyme. Sticking to a gluten-free, sugar-free diet has also been helpful, as have complementary therapies such as integrative manual therapy, neurofeedback, cognitive behavioral therapy and talk therapy. I recommend taking a holistic, full-body-and-mind approach to your illness.

How do you deal with people who don’t “get it”? My spouse/parent/friend thinks I’m just depressed and lazy.

This is a tough one, and one I really understand. It’s so frustrating to not only feel sick, but then to have people question the validity of your symptoms! I wish people could look inside our bodies and brains and see the damage spirochetes cause. It’s much easier for someone with a broken arm to receive sympathy, because the injury is visible. It’s also easier for patients of better-known illnesses like cancer to get the support they need, because everyone has a sense of how devastating and life-threatening cancer can be.

My first line of advice is to ignore the naysayers. No one knows your body better than you. You know what it feels like to be healthy and you know when you are sick. Seek out people who understand, or who can at least offer compassion and validation. Some patients find this in local or online support groups. Some find it by emailing me or other people on the winning end of this battle. I have found it in my friends who have supported and believed in me no matter what.

I recommend a few ways to try to bridge gaps in understanding. One way is to show your spouse/friend/parent/caregiver some of the blogs on this site, so they can read about the personal experience of Lyme disease. You might have them read some of the books that help to explain the disease. See if there is a Lyme conference near you, and ask someone you love to go with you or attend if you are unable to do so. All of these methods helped in my case, and I’m grateful for the support and understanding I now have.

Do you have any communication strategies?

One way might be to watch a documentary (such as “Under Our Skin”) together with the person who doesn’t seem to get it, so you can discuss it together. Another suggestion is to write a letter telling your loved one how you feel. Sometimes it’s hard to express ourselves orally, especially since we can be interrupted in conversation. Writing will allow you to organize your thoughts and get them all out on paper which, as Henry Miller said, is like “getting the poison out.” Use “I” statements, such as “I feel,” and try to really describe exactly what is going on inside your body. I like to think of the children’s serial “The Magic School Bus” in which a class of students embarks on field trips to places like the solar system, the ocean floor and the human body. If a Magic School Bus was driving through your body or brain, what would it see? Touch? Feel?

As Maya Angelou said, “through writing, the ‘I’ becomes ‘we’.” Writing has certainly helped me not only to heal myself but to promote understanding among others, and I hope it can be a useful tool for you, too.


jennifer-crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com

It’s OK to Be Angry

by Jennifer Crystal

What role does anger play in your Lyme journey?

 

For the last three winters, I have had the opportunity to teach an intensive “Healing Through Writing” course at my alma mater. Towards the end of the term, students read some of my own work, so that they can ask me questions about my medical journey and writing process. This year, a student threw me a curve ball. “Weren’t you angry at your body for letting you down?” she asked.

I paused. I experienced many forms of anger in the two decades I’ve been sick with Lyme. Anger, when no one could diagnose me with anything other than “stress” or “being run down.” Anger, when people told me the symptoms might all be in my head. And yes, anger once I finally got diagnosed and realized how long it would take for the antibiotics to work. I was angry at the all the doctors who had missed the diagnosis. Angry at the tick for getting me into this mess.

But had I been angry at my own body for letting me down? I had to really think about that one.“Yes,” I blurted out, quicker than I meant to. It’s like my body was saying, “Yes, you were mad at me.” I heard myself say, “For years I was so angry that my body wouldn’t get well as fast as I wanted it to.” I remember being mad when I had a Herxheimer reaction; mad when I couldn’t control how I would feel day to day, and often had to cancel simple plans at the last minute; mad when I woke up feeling worse than when I’d gone to bed, and mad when I had a fever or a migraine or my fingers ached too much to type.

I was mad at the illness. But when I really think about it, I was mad at myself, too.

I explained to my students that for a long time, there was a vast disconnect between my mind and my body. My body was stuck in park but my mind was in overdrive, not just from racing neurological symptoms, but also because of my desire to get up and moving and back to the high-functioning life I’d always led. My mind still wanted to be productive, active and successful, and I was angry at my body for not being able to do so.

It was precisely this disconnect that prevented me from getting well.

Sure, I got better. The antibiotics worked and my symptoms abated. But when they came raging back a few months after stopping treatment, I was, as my student had suggested, angry at my body for letting me down. Really, it wasn’t my body’s fault. It was my fault for diving into a high stress work and living situation without taking any baby steps in between. It was the Lyme spirochetes’ fault for taking these stressful conditions as an opportunity to replicate. It was, once again, the original tick’s fault for biting me and starting me down this long path.

I was angry, but it wasn’t my body’s fault. My body fell victim to the tick, and to Lyme, Ehrlichia, Bartonella and Babesia. It fought and fought against those illnesses and their debilitating symptoms. And my mind fought against my body, willing it to work harder, to get better faster.

A mind and body so vastly out of sync can’t be well, in the same way that two people constantly screaming at each other can’t suddenly get along. Those people have to stop and listen to each other. They have to really hear each other’s needs and be willing to compromise. The same is true for the body and mind. It wasn’t until I relapsed that I realized I couldn’t keep fighting with my body. I had to accept my chronic illnesses and learn how to incorporate them into the life I wanted to live. My body wasn’t something to be dragged along; it was the vehicle that was going to get me through life, and I needed to take care of it.

I started being gentle to myself. Instead of berating myself for having a bad day, I switched my messages to positive ones, saying things like, “Good job, Jen! You only did one errand today and then rested, and that means you’ll be able to run another errand tomorrow!” My anger turned to gratitude, and that made a huge difference in my recovery.

Of course, I still get angry sometimes. I still get “Lyme rage,” that is, going from 0 to 60 over something small just because I’m overtired. The difference is that I don’t get mad at myself for being angry. I recognize that it’s okay to be mad. I let myself sit with it for a short amount of time. And then I move on.

In my “Healing Through Writing” class we talk about the stages of grief, which include shock, sadness, anger, denial, bargaining, acceptance and healing. These stages are applicable to any traumatic situation, including serious illness. I tell my students that there are two important points to remember about these stages. The first is that they are nonlinear. It would be nice if we could move through sadness and anger and then stay in acceptance and healing, but unfortunately it doesn’t work that way. Instead we spiral through these emotions, working through shock and denial and getting to a point of acceptance, but then having an angry day before getting back to a steadier place. The spiral itself, though, is always moving up, as if on graph. We may dip down in to more “negative” places, but overall, we are moving forward.

I put negative in quotation marks because the other thing to remember about these stages is that they are all important. We tend to think of emotions like frustration, anger and sadness as bad, but in fact they have an upside, too. Without them, we couldn’t get to acceptance or healing. The key, of course, is not letting ourselves stay in those negative places for too long. I find it helps to recognize the emotion, allow myself a set amount of time to deal with it, and then get up and do something positive and unrelated. If you’re well enough, this might be taking a walk or calling a friend. If you’re bedridden, it might be flipping through a light magazine or listening to a peppy song. You can’t control what emotions will come up at any given time, but you can control your reaction to them.

I’m glad my student asked me such a thoughtful question; it gave me space to reflect upon the role anger plays in Lyme disease. What questions do you have for me? Every couple of months, I am going to dedicate one of my columns to answering your questions. Please email them to me at jennifercrystalwriter@gmail.com.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Keep It Simple: You’re Just Tired

by Jennifer Crystal

Fatigue is such a central part of Lyme disease that it can be easy to overlook. Don’t.

 

Recently I was on the phone with a friend telling her my woes. Angst about one area of my life led to anxiety about another, until I’d snowballed into an overanalytical, weeping mess.

“I think you need to just go to sleep,” the friend said.

I looked at the clock. It was almost my bedtime. Maybe I was just tired. Maybe in the morning my issues would seem smaller and more manageable.

Of course, they did. With a good night’s sleep, I was able to look at things with a clearer mind and more centered emotions. This was hard for me to understand when I was so tired because fatigue—especially the crushing exhaustion of Lyme—can make it impossible for us to see straight. It can make it difficult for us to recognize that when we’re feeling like our worlds are falling apart, sometimes the only real problem is that we’re tired.

Fatigue is such a central part of Lyme that it can be easy to overlook its various gradations. Lyme patients are tired, to some degree, all the time. For years, I struggled with a flu-like fatigue that left me shackled to the bed. Walking to the bathroom, lifting a dish from the table, and drying my hair were physically overwhelming tasks. Despite that incredible exhaustion, I was often unable to fall asleep, turning me into what my doctor once described as “a woman with her hair on fire.” A person is considered legally insane if they haven’t slept in 72 hours. At times I was awake for weeks on end.

After months of antibiotic treatment complemented by appointments with a sleep specialist, neurofeedback sessions, cognitive behavioral therapy, and sleep medication, I eventually was able to get a good night’s sleep. Of course, it’s all relative; those nights often still included heavy sweats and crazy nightmares, but at least my brain could rest. Over time the bad nights lessened in severity and frequency, and I was able to get more restful sleep, including restorative afternoon naps. With more hours logged in my sleep bank, my overall health improved. My body was finally getting the rest it needed, and my symptoms started to abate. Moreover, I became less of that weeping, emotional mess.

The problem with this chronic illness is that sometimes old symptoms flare, and when that happens, it’s hard to figure out what’s what. Fatigue can return virtually unnoticed. Even with my improved ability to sleep, I still get tired when I push myself physically or neurologically, and sometimes it’s hard to see that I’ve pushed too hard until it’s too late. Then, suddenly, I get overly tired and overly emotional. My thoughts grow repetitious. The songs and words that are always running in my head get louder. These flare-ups remind me of my worst Lyme days, and I start to worry that the castle is crumbling. Is my anxiety a sign I’m relapsing or neurosis? If I can’t nap for two days in a row, will I ever be able to nap again? Have I done myself in?

“No,” my mother tells me every time this happens. “You’re just tired.”

And almost always, after a neurofeedback session and an integrative manual therapy session and several good days of rest, my body and mind calm down. I return to my baseline of remission, where I function within a structure of good rest, where I work and write and socialize, where I offer a steady hand to friends needing emotional stability instead of the other way around.

When I was in high school, I struggled with math and science. Recognizing my tendency to overthink answers, my biology teacher used to walk by my desk during exams and whisper, “K.I.S.S.” The acronym stands for “Keep It Simple Stupid” and was first used by the U.S. Navy in 1960 as a design principle: designs work best when they are simple and not complex.

Same is true for our thoughts when we are overtired. Sometimes we do have issues that cause true anxiety, and sometimes symptom flare-ups are true signs of trouble. More often than not, though, we simply need sleep. I try to keep that in mind now when my hair starts to blaze. Next time, before I call a friend and let loose a snowball of angst, perhaps I’ll just crawl into bed and make the call in the morning, when things are almost always better.


jennifer-crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

A Matter of the Heart

by Jennifer Crystal

Lyme carditis: When it comes to maladies of the heart, don’t overlook Lyme disease and its co-infections.

 

In the summer of 1999, after studying abroad in Paris, I backpacked with a friend through Europe. We slept on trains, stayed in youth hostels, and met hundreds of fellow college students wearing small packs on their fronts and campers’ packs on their backs. We were sun-kissed, culture-saturated, and happy. The world was different then, and we were lucky to have had such a carefree experience.

Well, it was carefree for my friend and fellow travelers. But for me, something wasn’t quite right.

As I moved from country to country, I started noticing a pulling sensation in my chest. I would be walking down a street, or waiting for a train, and suddenly feel something akin to a tight rubber band being stretched from one side of my breastbone to the other. It would come on without warning, but then dissipate, until I’d feel it again a day or two later. I brushed the sensation off as strain from my backpack, which easily weighed fifty pounds.

But I felt the pulling when I wasn’t wearing the pack, too. Back in the U.S., I decided to make an appointment with my primary care doctor.

The previous semester, a student at my college had dropped dead due to an undiagnosed heart condition. Her story was in the back of my mind as I traveled, and I relayed it through fearful tears to my doctor. I remember the soft touch of his hand as he laid a reassuring palm on my forehead. “Ohhh, how awful,” he said. “Of course you were worried. But no, that’s not what’s going on here.”

What was going on, he said, was costochondritis: inflammation of the cartilage that connects the ribs to the breastbone. The doctor was able to diagnose it by pressing gently on the area, which felt bruised. He explained that while painful, the condition was nothing to worry about, and might have been brought on by the strain of carrying my pack or by stress.

That latter reason was a catch-all rationale I’d heard repeatedly in the two years leading up to my European tour. During that time I’d wrestled with an on-and-off flu, frequent bouts of bronchitis, idiopathic fevers, and hypoglycemia. No doctor had ever drawn a connection between those symptoms, and when standard lab tests came back normal, I was told I was run down or stressed—or that maybe it was all in my head.

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In fact, my body was harboring undiagnosed tick-borne illnesses: Lyme, Ehrlichia, Babesia and Bartonella. It would be another six years before a specialist drew the right connection between the symptoms and made an accurate diagnosis. The costochondritis was yet another clue that was overlooked, as was the tachycardia (racing heartbeat) I sometimes experienced. Lyme bacteria can squirrel into all organs, tissues, and cells, and if it invades heart tissue, it can cause Lyme carditis, which can manifest in a number of ways: costochondritis, tachycardia, bradycardia (slow heart rate), heart block (an electrical disconnect between the upper and lower chambers of the heart, causing them to beat at different rhythms), and myopericarditis (swelling of the heart).

Comparatively speaking, my symptoms were mild, and once I was accurately diagnosed and treated, I never experienced them again. Renowned oncologist Dr. Neil Spector was not as lucky. As he details in his memoir Gone In a Heartbeat, Dr. Spector experienced 16 years of episodic alternating tachy- and bradycardia, even once having the symptoms of a full heart attack. His heart rate would always return to normal, though, and his symptoms, like mine, were often blamed on stress. By the time Dr. Spector was accurately diagnosed with Lyme, he had dealt with brain fog, stiffening of the veins, visions of bright lights during sleep (later associated with lack of oxygen to the brain due to a slow heart rate), heart block, weight loss, and arthritis. He had a permanent pacemaker, a defibrillator, and ultimately underwent full blown heart failure and a heart transplant.

Had Dr. Spector’s heart problems been accurately diagnosed from the start as Lyme-related, he could have avoided this near-fatal trajectory. If your symptoms have been written off as “stress” and you know—in your heart—that something deeper is going on, please persist in finding the right doctor and right diagnosis.

If you have already been diagnosed with Lyme but have not had your heart checked, please ask your doctor to do so. Though the CDC only reports carditis in 1% of Lyme cases, its severity can be a matter of life and death.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Groundhog Day: Casting a Shadow on Lyme Disease

by Jennifer Crystal

The repetitiveness of living with Lyme disease can feel like Groundhog Day, over and over again.

 

When I was studying in France, I had dinner with my landlady on Groundhog Day. Except, as I describe in my memoir Et Voilà, “there are no groundhogs in France, so February 2nd is instead marked by a national celebration of crêpes.” As we sat down to a decadent meal of savory and sweet crêpes, I tried to explain to my landlady the tradition of Punxsutawney Phil. She gave me a look that said, you must just sound crazy because you don’t speak French well.

Now that I am fluent in another language—Lyme disease—I have similar trouble explaining myself. Because so many of our symptoms are interior, Lymies have difficulty getting healthy people to understand how we’re feeling. One aspect that’s particularly tough to communicate is the repetitiveness of the disease: days that roll into one; daily medication routines; obsessive thoughts; word and song iteration. Lymies tend to feel like Bill Murray in the movie Groundhog Day, when his character discovers he is stuck living the same day over and over.

Unfortunately, our problems don’t resolve in the span of a two-hour movie. Instead, we find ourselves playing out the same scenes day in and day out. When I was at my sickest, I’d go to bed hoping I’d feel a little better in the morning, and wake up feeling either exactly the same, or worse. Because of Herxheimer reactions and the ebb and flow of Lyme treatment, the worse-before-better phenomenon became frustratingly common. With each new day, I didn’t know if I’d move forward, stay put or take two steps back. Rarely did I take a step forward, and even when I did, it would be quickly followed by one or more steps back.

Most days I’d wake up feeling like I hadn’t slept. Sometimes I was exhausted from eight or more hours of harrowing nightmares. I’d want to roll over and go back to sleep, but couldn’t. I had to stick to a very specific medication routine. Each morning I’d attach a bolus of antibiotics to my Peripherally Inserted Central Catheter (PICC line) and watch it drip for an hour while I ate breakfast. Due to dietary restrictions, that breakfast didn’t vary much. Afterwards I’d swallow at least ten pills of various shapes, sizes, and colors, then eat a spoonful of peanut butter, the fatty food necessary to absorb a glowing anti-malarial syrup often referred to as “liquid gold”.

After breakfast I’d try to send a few emails, though that was dependent on how stiff my fingers were and how thick my brain fog. Some days I could write paragraphs, and eventually wrote pages of my book. Other days I couldn’t type or hold a pen, and couldn’t concentrate on even one sentence. On those mornings I’d retreat back to bed, sometimes dozing off but often just lying there, listening to the clock tick.

This went on until lunch, when I’d break for another meal and more pills, and then I’d try again, often unsuccessfully, to nap in the afternoon. I’d get up in the evening when my family came home and would try to sit at the table long enough to hear about their days, which had variety. They did different things at work and school. They had meetings in different locations. They had coffee with different people. They meant well when they asked me, “And how was your day?” but the question made me cringe, because I always gave the exact same report. After awhile, I was able to drive myself to appointments, meet friends for lunch, and tutor high school students in French. But for a long time—years—my days were very, very quiet.

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That’s not to say my brain was quiet. Though I didn’t give it much fodder since I couldn’t read, watch TV, or focus on audiobooks or music, the spirochetes in my head latched onto a time my brain could do all those things. Each day I’d wake up with a song in my head. There was no rhyme or reason to which song my brain picked; when I woke up it was just there, playing over and over and over as a perpetual soundtrack for the day.

Everyone knows how annoying it is to have a song stuck in your head. But imagine what it’s like when you’re bedridden and can’t go out into the world and do something to make you forget the song. Imagine what it’s like when your head already feels like its filled with molasses, when you are exhausted but can’t sleep, when you have nothing to do but lie there and “listen”.

Sometimes, it wasn’t just one song. As the day went on my brain would add to its repertoire, so that I’d have three or four tunes playing at once. This cacophonous mashup made me want to shake my head and scream.

It wasn’t just songs that were stuck in my head, either. Ideas played on repeat, too. Many Lymies describe having obsessive thoughts. For me, it was like I had a voice in my head narrating lines from my book or reactions to conversations I was a part of. It would read those lines again and again. The needle in my head was stuck. My world was not quiet; it was maddeningly repetitive.

Now that I’m in remission, I can tell when I’m having a flare-up, because I start thinking of everything twice. It’s not a conscious choice. It’s just the place my brain goes when its overtired. That’s a sign for me to rest, to have a neurofeedback session, to get some cranial sacral therapy. No matter how well I’m doing, I still always have a song in my head. Always. Right now it’s “Payphone” by Maroon 5. I’m not at a payphone—haven’t used one in years, in fact—but that’s where my brain is. Luckily, my daily songs play in the background now, because so much living is happening in the foreground. The songs and the occasional word iteration are bearable, because in general, I am taking daily steps forward. I am even back to eating (gluten-free) crêpes.

I lived the movie version of Groundhog Day for a long time. I promise you, with proper treatment the long winter does eventually end. Here’s hoping that Punxsutawney Phil will not see his shadow this week, and you will have an early spring.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Living with Lyme Brain

by Jennifer Crystal

Short-term memory loss, confusion, brain fog, and word repetition are just a few symptoms of Lyme brain experienced by many Lyme patients. How has Lyme brain affected you?

 

I was recently talking on the phone with a friend who is expecting a baby. “I’m so sorry I didn’t call you back earlier,” she said. “I can’t remember anything these days. It must be ‘pregnancy brain’!”

I knew what she meant. I’ve experienced “Lyme brain,” and the symptoms are similar. Throughout my 20-year battle with Lyme and other tick-borne illnesses—eight of which were undiagnosed and untreated—I have wrestled with shortterm memory loss, confusion, brain fog, word repetition, difficulty retrieving vocabulary, and a tendency to mix up words. Other neurological symptoms have included insomnia, hallucinogenic nightmares, migraines, burning extremities and mini seizures.

It’s hard to explain the neurological component of Lyme disease to people who haven’t experienced it. Most people know Lyme causes joint pain, and it does. But when it goes undiagnosed for too long, the bacteria can replicate and cross the blood-brain barrier, invading the central nervous system. A scan of my brain showed that the tickborne parasite babesia was preventing me from getting oxygen to the left side of my brain. The scan also showed lesions caused by Lyme.

But that scan was done years after my initial tick bite, years after I’d first noticed that my hands trembled when I tried to apply eyeliner, years after doctors had written off my migraines as “altitude sickness” or “stress.”

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Unfortunately, my story is all too common. The neurological symptoms of Lyme disease are some of the most confused with other illnesses. Besides the brush-off diagnoses I received, patients are often misdiagnosed with multiple sclerosis, Parkinson’s, and/or mental illness. Without proper diagnosis, neurological Lyme disease can lead to paralysis, schizophrenia and even death.

I was one of the lucky ones. My sleep disturbances were unbearable at times, but my day time neurological troubles never got worse than brain fog and word loss. So what did that actually feel like? Imagine molasses seeping through your brain, pouring into all the crevices until your brain feels so full that you wonder if it will explode right out of your skull. Imagine that thick substance sticking to the synapses of your brain, dulling your thoughts, slowing your ability to put those thoughts into words.

It became impossible to read or watch TV. Just skimming the opening paragraph of an article left me confused and frustrated. Sometimes I’d be telling a story to my family—something as simple as, “I ran into an old friend at the pharmacy today”—and I’d stop mid-sentence and ask, “What was I talking about?” I had no memory of what I’d just said or what point I was trying to make. I also sometimes mixed up the syntax such as, “I ran into a friend old at the pharmacy today.”

Other times, I couldn’t come up with basic words. While telling my family that story I might say, “I ran into an old friend at the…at the…at the blank today.” I knew that “today” came after the word I was trying to say, but I couldn’t fill in the blank. Usually whomever I was speaking with could fill it in for me, but I was nervous about that happening in public. I’d be at the pharmacy and suddenly not be able to come up with my zip code when prompted by the pharmacist. Sometimes the word or number would come eventually, as if my brain had done a Google search. Other times I would just try to laugh it off, saying something like, “Wow, I must be really tired today!” I wished I had the more obvious excuse of “pregnancy brain.”

As a writer, I have always been exacting in my vocabulary. Losing the ability to come up with precisely the right word was humiliating. Words are my currency, and I was broke.

Luckily, the antibiotics started beating out the spirochetes in my brain, and slowly things improved. Soon I could read an entire magazine, as long as I stopped in between articles to sit quietly and let my brain rest. Eventually I could type multi-paragraph emails. The word repetition fortunately decreased . I worked my way up to attending graduate school, writing papers and essays —thinking again at a high level.

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These days, I still wrestle with some neurological symptoms especially when I’m tired. Recently I was writing a chapter of my next book and called my mom to say, “I’m thinking of a word that sounds like ‘synonymously’ and means two things happening at the same time.”

“Simultaneously,” she quickly said. I smiled, filled in the blank, and continued writing.

While working on my book, I’ve been doing some prompts with a writing group to help generate material. Recently we wrote about things we’ve lost and found. “I’m writing about losing my mind,” I told my mother.

“How do you know you’ve found it?” she joked.

I know because I can write about my experiences with some distance, using exactly the words I want. I know because I can teach. I know because I can read student essays and newspaper articles. I know because I can read entire books—albeit slowly—and I’ve even written one, too. And in the rare event that  I can’t think of a word, I know I can always call my mother.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com

The Double-Edged Sword of Boredom

by Jennifer Crystal

Are you bored of being bored? Pace yourself.

 

With the holidays over, winter is settling in to its usual slow rhythm. If you don’t love winter activities like skiing and snowshoeing, let’s face it the season can get downright boring.

Lyme patients and other housebound people wrestle with boredom every season, but it has a different meaning for us. When a friend heard I’d been bedridden for months, she exclaimed, “Oh you must be so bored.” I remember thinking, I wish. I was so exhausted and wracked with pain that I couldn’t think about anything except how awful I felt. I was too physically and neurologically impaired to do typical sick-day activities like watch a movie or read a book. Emailing hurt my fingers; playing cards wore out my arms; listening to audiobooks was confusing.

I realized that boredom had taken on new meaning for me. When I was little and home sick from school, getting bored with the aforementioned activities meant I was getting better. As an adult with Lyme, I wished I felt well enough to even do those activities. “Normal boredom” became something I craved. I lay in bed achy and feverish, unable to sleep. Every time I glanced at the clock, I couldn’t believe only five or ten minutes had passed.

As I started to get better, I was slowly able to do regular sick-day activities. I could type a couple short emails before my hands tired out. I could have a brief conversation on the phone. I couldn’t read a book, but I could skim a light magazine. I could watch half-hour game shows, shouting answers from the couch. People would say to me, “You’re getting excited about “Wheel of Fortune”? You really need to get out more.” What they didn’t realize was that for me, watching what they considered to be a boring show was a sign of health.

Unfortunately, boredom can be a double-edged sword when you’re sick. When I started to get well enough to tire of magazines and TV, I wanted to go out and do all the things I’d missed in the years that I was so sick. I dove in headfirst—who wouldn’t?—and that sent me right back to bed.

“I don’t get it,” I whined to my doctor’s PA. “I was feeling so good. Then I went to the gym and rode a stationary bike for five minutes…”

“…And you crashed,” she finished my sentence.

“Yes! How did you know?”

The PA sighed. “This is a typical problem for Lyme patients. I hear this over and over, that people want to jump right back into activities, and they don’t pace themselves. With Lyme recovery, you have to go really slow.”

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This wasn’t what I wanted to hear. I’d been living slowly for years. My recovery had gone at a snail’s pace. As soon as I felt better, I wanted to move right into the fast lane. But Lyme doesn’t work that way. Five minutes on a stationary bike was four and a half too many. I had to start at thirty seconds, and recover from that effort for a week before trying again. When I was ready, I moved up to forty-five seconds. I continued to increase in small increments, sometimes having to take a two-week break. It was a slow, spiraling challenge to get to five minutes without crashing, but I did it.

I realized that while pacing myself was boring, it was important.

I still pace myself, and that allows me to now ride a recumbent bike for over an hour on a real road, up and down hills. I paddleboard. I ski. I teach. I write. And I nap. Forcing myself to rest in between activities can be frustrating, but the tedium of naps and off-days is far better than the monotony of being ill.

These days, I relish “normal boredom.” I love evenings when I have time to read a book, and I feel well enough to do it. Boredom no longer feels like a double-edged sword; instead, it feels like something I have the power to slay.

If you are feeling bored, don’t despair. It’s a sign that you are getting better. Embrace it. Before long, you’ll be out doing the activities you love. Or hibernating inside with a good book, just because you can.


jennifer-crystalJennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com

Looking Back, Looking Ahead, Giving Thanks

by Jennifer Crystal

The end of the year is a time to reflect. For those of us with a chronic illness, like Lyme disease, it can take a little more effort to look back, look ahead, and give thanks.

 

The end of the year is a time for reflection. As we prepare for what’s ahead, we look back at what’s happened over the last 12 months. By any measure, 2016 has been a tough year. We’ve suffered traumatic national and global events. Many people have suffered physically, mentally and emotionally from Lyme and other tick-borne diseases. Some have gotten better, but some are still struggling, wondering when their sufferings will end.

The end of 2016 puts a hard stamp on all that has been and opens us up to us a blank slate for 2017.

We don’t have control over what’s going to happen. We can’t turn our calendars and write “Tuesday, January 2nd: Get better.” We can, however, control our perspective on what has happened and what might happen.

Think about driving a car. In order to do so safely, we have to glance in the rearview mirror every so often. We can’t merge, pass, or exit without knowing what’s going on behind us. What we see in the mirror helps us determine the best course of action when moving forward.

There are rules of the road for life, too. We have to learn from the tough roads we’ve already traveled. For Lyme patients, it’s helpful to think about questions such as: What did I do to take good care of myself in the past year? What created an obstacle to my getting better? What changes can I make—to medication, schedule, sleep hygiene, support system, attitude—to help me on my journey to health? Which lessons do I want to take with me into 2017 and which do I want to leave behind?

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If we are to keep moving forward, we have to leave those bad times and bad choices behind. We reflect on them, but then we drive away, watching them grow smaller in the rearview. The terrible experiences of 2016 may loom large now, but someday, they’ll just be a blip on your map—even if you’re currently bedridden, racked with pain, soaked with nightsweats, and crazed by the thoughts and songs and images flashing in your head. I know this because, as so many past years drew to a close, that was me. And now I’m driving far, far away from all that, hoping to never turn back.

I also know this because rearview mirrors aren’t the only point of reflection in a car. Don’t forget about side mirrors which sometimes catch obstacles in your blind spot. The message scrawled across those mirrors is clear: “Objects in mirror may be closer than they appear.” In other words, good health may be closer than you think. Better days in 2017 may only be hiding in your blind spot, ready to pull into view at any time.

And so, we must remain hopeful.

What was good about this year for you? There must be something. Did you finally meet the right doctor? Did a friend drive you to the pharmacy, or sit with you on a particularly hard day and make you laugh? Did flowers grow outside your bedroom window?

As I reflect on the year, I find it helpful to create a simple list of good things that happened, and then make a list of small goals for the New Year:

  • If I am not comfortable with my current doctor, I will search for a new one (click here for help finding a Lymeliterate physician;
  • I will work to get off of just one of my medications or supplements, if I am physically ready to do so;
  • I will find a new way to pamper myself (how about a warm bath each night, or a subscription to a light magazine?);
  • Each night I will write down three good things about the day;
  • I will give thanks to people who support me (give a hug, send a note of appreciation, or frame their favorite quote)

Writing these lists makes me feel grateful and hopeful. It makes me feel ready to take one final glance in the rearview mirror, and drive forward into 2017. See you in the New Year!


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

 

Locking Up the Obstacle of Guilt

by Jennifer Crystal

Patients with a chronic illness, like Lyme disease, can carry more guilt than symptoms.

 

The holiday season is, as the Andy Williams song goes, “the hap-happiest season of all.” While many people feel this joy, others struggle to be of good cheer. Depression and anxiety can run high during the holidays. As we reflect on the year just passed, many people wrestle with feelings of guilt.

That’s one I know well.

Patients with Lyme or any long-term illness can carry more guilt than symptoms. We feel guilty for being sick, for not getting well fast enough, for being a burden on caregivers, for not being able to work, for being dependent on others. We have guilt about our guilt, a vicious cycle that can make us want to crawl in a cave.

I experienced all of these feelings when I first got sick. I went from leading a completely independent life—teaching, ski instructing, taking care of my own needs—to being bedridden and dependent. I felt intense pressure from others and from myself to get out of bed, get well, and get back to my life. How badly I wanted to do all of those things! But with increasing symptoms and only half a diagnosis—of Epstein-Barr virus, the treatment for which was “just rest”—my ability simply didn’t match my desire.

Guilt gnawed at my stomach when people asked, “So are you thinking of getting a job?” or “When are you planning to get well?” Even a simple “What did you do today?” made me cringe because I didn’t have much to report besides “sleep” and “eat”. The implication was that my illness was something I could control, and the fact that I couldn’t will myself to get well, sent me into a tailspin. I started thinking that getting sick was all my fault. Maybe I had pushed myself too hard during those years of teaching and intense exercise. Maybe I hadn’t taken good enough care of myself. Maybe some of my symptoms were all in my head, as a few doctors suggested.

It turned out that none of that was true. My intractable illness was the fault of an insect tinier than a poppy seed, which had bitten me many years earlier and thus made it impossible for me to get over Epstein-Barr. After two bedridden years, I was finally accurately diagnosed with Lyme and other tick-borne diseases. Once I had a concrete explanation for seemingly idiopathic symptoms, many people who had pressured or not believed me laid off the guilt trips.

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Laying off myself was another story. Recovery from Lyme is a long, zigzagging process. It took a year of intravenous antibiotics and intense anti-malarial medication for me to start feeling better. Guilt stayed with me on that journey. I felt bad that I wasn’t steadily getting well, that I often didn’t have the energy to do dishes or laundry or help around the house. I felt terrible that I was still so reliant on others.

When I finally was well enough to move out on my own and work part-time, I dove in head-first, wanting to escape the life of illness and prove to myself and others that I still was a motivated and capable person.

Unfortunately, the illness wasn’t escapable. Because I’d taken too large a leap, I quickly relapsed, landing right back where I’d started: bedridden, under my parents’ care, too sick to function.

I couldn’t stand it.

I felt guilty for taking too large a leap, for getting sick again, for being a burden. This time the guilt didn’t just gnaw at my stomach. It consumed me.

“You’ve got to stop this,” my stepmother said one day as I cried hysterically. “This guilt is going to block you from getting better.”

She stopped me in my tracks.

I realized in that moment that while I didn’t have control over my illnesses, I could control how I reacted to them. My therapist had been telling me this for years, reiterating that being sick was not my fault, that I was making myself worse by adding anxiety and guilt to the situation. But I didn’t really hear the message until that day at the kitchen table with my stepmom.

A physical therapist had once suggested I picture a wooden chest or trunk, and imagine myself locking all my worries inside. I didn’t have to throw them away. I could store them and take them out if I needed them, but I held the key. I got to decide when or if they came out.

Remembering that imagine, I suddenly felt like I held the key to allowing myself to get well. My guilt was still there, of course. But I acknowledged it and then locked it away, because keeping it out would only prolong my recuperation.

After I locked up my guilt, a funny thing happened. I started to get well. Not right away, of course—if only antibiotics worked overnight! But I transitioned to a calm acceptance of my situation rather than a nervous frenzy over it, and my body responded well to the shift. My symptoms abated much faster than expected.

Now that I am in remission, I still sometimes feel guilt. When I do, I ask myself if it’s over something I can change, or if it’s something that’s out of my control. If it’s the latter, I store the guilt in my wooden chest. Maybe one of these days, I’ll even throw away the key.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

It’s Not All or Nothing

by Jennifer Crystal

Suffering from a chronic illness, like Lyme disease, can make you feel like you are missing out this holiday season because you can’t attend a party or visit with a friend.  But it doesn’t have to be all or nothing. 

 

There’s a new movie out called Manchester by the Sea that I’d really like to see. When I mentioned this idea to a friend, she said, “That might be a tough movie for you.” She didn’t mean the content. She meant that it was filmed in a way that you always feel like you’re watching from a character’s shoulder, creating an intense visual effect that she worried might rile up my neurological symptoms. Furthermore, she cautioned there are a lot of driving scenes that could cause motion sickness.

“But you still should try it,” she said. “Just sit in the back, so you have the best peripheral vision possible, and leave after ten minutes if it’s too much for you.”

In the past, I never would have accepted this advice. When I was really sick, I didn’t have the energy to sit through an entire film, so I thought, why go? Another friend helped me to reframe that thinking. When I told him about all the things I wouldn’t or couldn’t do, he asked, “Does it have to be all or nothing?”

“What’s the point of paying for ten minutes of a movie, only to have to get up and leave?” I countered. In those days especially, it took a lot of energy for me to get dressed, wrap my PICC line under a sleeve, and drive to a theater. My hourglass ran out so quickly that I didn’t want to waste energy unless I knew for sure it would be worth it.

My friend just wanted me to see that while I was waiting to get better, I was missing out on a lot of good things in life. I had this vision of getting totally well—of having my energy completely back—and then going back to the activities I’d once enjoyed at full-tilt. I didn’t want to ski on the bunny hill, just to say I did it; I wanted to get back to deep powder and moguls. I didn’t want to go to a party looking tired; I wanted to be the life of the party.

The thing about Lyme, though, is we never know if we’re going to get that life back. It all depends on how long we went undiagnosed, how long we’ve been sick, whether we have co-infections, whether infections have crossed the blood-brain barrier, and how we respond to treatment. Most frustrating of all is that the answer to every one of those questions is different for each patient. There is no set protocol or prognosis for tick-borne disease. We don’t know when or if or to what extent our symptoms will improve. So instead of waiting for the big moment of “all better!,” we need to celebrate the little victories, and adjust our lives accordingly.

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This means instead of waiting to be the life of the holiday party, we should consider attending for just half an hour. Instead of waiting to see an entire holiday concert, we should commit to only going to the first half. Instead of lamenting how tired we might feel during that party or how weird it might be to miss half a show, we can reframe our thinking to, “It’ll be great to say hello to friends who I haven’t seen in awhile” or, “It’ll be nice to hear even a little bit of music.” Like most things in life, it’s all a matter of perspective.

Of course, this glass-half-full mentality doesn’t always work. Sometimes an event or effort really is too much for us, causing setbacks that make us feel like the glass has dropped and shattered all over the floor. I remember going to a piano concert at the local library one afternoon during my convalescence. I had just woken up from a nap, and was feeling sluggish and out of sorts. My nerves were frayed, which I quickly realized when the concert began and I looked around to see if other attendants found it to be as loud and grating as I did. Everyone around me—most at least three times my age—seemed to be enjoying the concert just fine. My sensitivity to sound was so hyper-engaged during what was usually a hard time of day for me that the classical piano sounded like crashing heavy metal. I had to leave.

That experience was discouraging, but when I told my friend about it, he didn’t let me give up. He validated why it had been particularly hard and then encouraged me to try attending events in the morning, which was and still is a much better time of day for me. Since then, I’ve learned to make similar choices and adjustments that allow me to do some fun things—even if only in part—that I might otherwise have given up on entirely. Movies in the theater can still be hard on my brain, because the previews are often loud and fast-paced, causing sensory overload before the feature even begins. So I’ve learned to wait out previews in the lobby. I look down or close my eyes when the action on the screen is flashing or violent. I leave parties half an hour before I hit  the physical or neurological wall, so that I don’t melt down while there.

When you’re bedridden, going to a movie or a party might be out of the question. Even in that state, though, your life still doesn’t have to be all or nothing. Is your family downstairs decorating the Christmas tree? Why not go hang one ornament to participate at all, instead of missing out entirely? Are your friends having a Hanukkah party? Why not go just to see them light the menorah, even if you can’t stay to eat latkes and play dreidel? Participating in even the smallest bits of life while suffering helps us get through bad periods, and reminds us of what we can do, no matter how sick we are. And that, to be sure, is better than nothing.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com.

 

Spreading the Light of Gratitude

by Jennifer Crystal

The importance of finding gratitude when you suffer from a chronic illness like Lyme disease

 

The upcoming holiday has us all thinking about being thankful. Thanksgiving is a time for feasting and gathering, but it is also a time for reflection on the things we’re grateful for. Depending on what’s going on in our personal lives and in the world, some years it’s easy to come up with a long gratitude list, and other times the list is sadly lean. Even during a time of purported joy, it can be easy to grow cynical and depressed when you don’t feel like you have much to be thankful for.

Lyme patients, people with chronic debilitating illnesses, and anyone going through adversity often fall into that trap. It’s hard to sum up gratitude when you’ve been sick for days, months, or even years. It’s hard to be thankful when it feels like the universe is conspiring against you, when things keep going from bad to worse, when it seems like your world or the world at large is falling apart.

It’s hard, but it’s important to find gratitude.  In fact, it can be game changing.

Research proves that practicing gratitude not only improves health and outlook, it actually rewires our brains. Following a study done by Indiana University researchers, New York Magazine reported that “…the more practice you give your brain at feeling and expressing gratitude, the more it adapts to this mind-set—you could even think of your brain as having a sort of gratitude ‘muscle’ that can be exercised and strengthened.”[1]

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How do you go about flexing that muscle when you’re bedridden, or you can’t see past your despair? My own gratitude muscle almost succumbed to entropy. I stopped that from happening by starting a simple practice: each night before bed, I pulled out a journal and wrote down three good things that had happened that day. It was something I used to do orally with my campers when I was a summer camp counselor. Each night at Taps, we’d go around the cabin and everyone would say three things they liked about the day. The activity helped us reflect on busy days that were fun but also had their hardships; it set a positive tone in the cabin; and it helped the campers drift off to sleep with warm thoughts on their mind. I figured I could use that same positivity during my dark life of illness.

At first I had a hard time coming up with even one good thing about a day filled with pain and fatigue. But I realized I could find good even in those symptoms. Maybe my pain had only been a 9 that day, when for the last three days it had been a 10. That was a good thing. Maybe I had been able to sit up for 30 minutes, when previously I hadn’t been able to get up at all. Once I started reframing my perspective on all the awful feelings I was experiencing, it became easier to find their silver linings.

Soon, I was able to look past my symptoms when I reflected on the day. I realized other things had also happened during the day, besides a migraine and a fever and an exhausted afternoon when I could not nap. A friend had called. A get well card had come in the mail. I’d had a delicious gluten-free sandwich for lunch.

It didn’t matter that my list was simple. What mattered was that it existed. In just a few weeks, my gratitude journal started to fill up. On bad days I could flip through old entries and find something to smile about. I held a burgeoning, tangible reminder of good things that were happening amongst all the bad, and simply holding that growing booklet in my hand gave me strength. As my gratitude muscle grew stronger, so did I, and that would come as no surprise to the researchers at Indiana University. According to the New York Magazine article, the study results “suggest that even months after a simple, short gratitude writing task, people’s brains are still wired to feel extra thankful.”

It gets better. The article also states, “…gratitude can spiral. The more thankful we feel, the more likely we are to act pro-socially towards others, causing them to feel grateful and setting up a beautiful virtuous cascade.”

I see this cascade every year at my own Thanksgiving table. Before the meal, each member of our family says what they are thankful for. We’ve done this for as long as I can remember. One year, my sister suggested we add candles to the tradition. Now, as each person says what they’re grateful for, they light a small votive candle. They then use their candle to light the next person’s candle. That person says what they’re thankful for and then passes the flame to the next.

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What strikes me about this exercise is that we can see how gratitude builds upon itself. Saying what we’re thankful for is nice, but the words disappear. With the candles, we have glowing reminders of our thanks. Each person’s flame is small, but together, we create a circle of light. It reminds me that there is more to be thankful for than I sometimes realize.

During my lowest points of illness, when I struggled to find something to be thankful for, this exercise also reminded me that I was surrounded by gratitude, even when I couldn’t feel it myself. There is gratitude and light around you, too. You may not feel it from the confines of your bed. You may not have the support you need from your own family or friends. But it is out there. By writing this piece, I pass my light on to you, in hopes that it will make your day a little brighter. When you’re better, you can pass that light on to someone else. Until then, remember that there are lights around you to buoy you up. Life is not as dark as it may seem.

And even from your bed, you have the ability to start controlling that light. To start flexing your gratitude muscle. Start tonight by writing down three good things about the day. What will the first one be?

[1] http://nymag.com/scienceofus/2016/01/how-expressing-gratitude-change-your-brain.html


Opinions expressed by contributors are their own.

Jennifer-CrystalJennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com.

Never Give Up

by Jennifer Crystal

Lessons for Lymies from Winston Churchill and the Chicago Cubs

 

During the most intense period of my treatment for tick-borne illness, I lived with my parents and sometimes other family members. I shifted bases between their homes, grateful for the support of all, but keen to spread out the burden of caregiving. I did the hour-long drive between my mom’s and dad’s more times than I can count, traveling on a long, winding desolate road that connects two major highways in my home state. The route through rundown factories and old cemeteries was peppered with billboards. Among the advertisements for used car dealerships and discount insurance was a huge sign with a quote from Winston Churchill: “Never, never, never give up.”

That sign always gave me pause. Sometimes the drive took all my energy for the day. Sometimes I was too sick to be at the wheel, and one of my parents had to drive me. Sometimes I was in the midst of a Herxheimer reaction, getting the ride in early before the migraine and achiness and frequent trips to the bathroom made it impossible for me to be in the car. Sometimes I gripped the wheel or the passenger seat wondering if I would ever again have a home of my own, if I would ever be able to drive more than an hour, if I would ever feel well again.

The Churchill quote reminded me that in the middle of despair, when it’s least expected, we can come upon signs of hope. And it’s up to us to hold on, to keep traveling the difficult road, until we see them.

I was reminded of this lesson earlier this month when, after 108 years, the Chicago Cubs won the World Series. Despite their team being called “Loveable Losers,” Cubs fans held out hope for generations. The players went out every year determined that this could be the one. This year, it was.

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The victory was the stuff of history books, and not just because it took108 years. It was the kind of nail-biting, late-night win usually seen only in movies. Following the Cleveland Indians’ 3-1 lead in the Series, the Cubs battled from behind to win two more games and force a seventh game tie-breaker. They were leading for most of that game, but the Indians suddenly took the lead in the eighth inning. The game tied in the ninth, going into extra innings, and then there was a rain delay. The possible victory could not have been more drawn out. Fans huddled together in the stands and the streets during the 17-minute delay. Players huddled together in the weight room, encouraging each other.

The rains came and minutes later, the 108-year drought was over.

My home state may be in New England—caught between the biggest team rivalry in baseball—but I was cheering for those Cubs as heartily as any Midwesterner. Because I know the road they’ve traveled. I know how easy it is to give up. And I know how much sweeter the victory is when you don’t.

I receive emails every day from patients who want to throw in the towel. Some are in the throes of Lyme treatment and can’t understand why they’re feeling worse instead of better. Some haven’t been accurately diagnosed because of the poor state of diagnostic testing or physicians misinformed about Lyme. All of them are desperate.

I know when you are in the depths of despair that it feels anything but temporary. There were times when I was curled in the corner of a room at one of my parents’ houses, sobbing and shaking, certain I couldn’t hold on another minute, another second. I never ever would have believed when I was bedridden that I would one day attend graduate school, publish a book, or teach writing classes. That I would one day live in my own apartment. It happened for me because I didn’t give up, and that can happen for you too.

Don’t just take my word for it. Look to other patients who have wrestled with Lyme, like Ally Hilfiger, author of Bite Me, and Katina Makris, author of Out of the Woods. Look at the incredible new research being done every day to create better diagnostic tools and treatments. This year Global Lyme Alliance received a record number of applications for research funding. Scientists at top-tier universities in the United States, Australia, France, Switzerland and the United Kingdom are all working to get to the bottom of tick-borne disease. They’re all working to make our lives better. And that means we can’t give up: on them, on ourselves, on hope.

With new research and increased awareness, I’m sure we won’t have to wait 108 years for our victory—or even a small fraction of that.  Better diagnostics, better treatment, greater understanding, and maybe even a cure are closer than we think. We just have to hold onto hope. We must never, never, never give up.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com.

Stabilizing Blood Sugar During a Season of Sweets

by Jennifer Crystal

Hypoglycemia and Lyme Disease

 

The first symptom of tick-borne illness that I experienced was one I’d never heard of: hypoglycemia. I was working as a summer camp counselor in the woods of Maine and had just finished a morning teaching water sports in the hot sun. As I walked into the dining hall for lunch, I suddenly felt the room was spinning. The chatting campers morphed into a blur of color. I sensed the blood draining from my face and grabbed onto a bench before my legs gave out. Friends held my arms and got me to an adjacent counselors’ room, where I lay down on a couch. “You must be dehydrated,” one said.

I shook my head and said,  “I’ve been drinking water all morning.” Despite lying down, I still felt like I might faint. My palms were sweaty and my heart raced. One counselor put her hand on my foot as a gesture of reassurance. I panicked. “I can’t feel your hand,” I cried as my whole body started to shake. “My feet are numb!”

What I could feel, however, was a plastic spoon that had suddenly been placed in my mouth. I tasted the sweet syrup of blueberry pie. “Eat this,” I heard the camp nurse say. Dutifully, I swallowed spoonful after spoonful. Within minutes, my body calmed down. Sensation returned to my extremities. I stopped sweating, and my heart stopped racing. My cheeks flushed, and the blurry faces came back into view. The nurse held my hand and said soothingly, “You had a low blood sugar reaction. You need to get checked for diabetes.”

Tests showed that I was not diabetic, but I was hypoglycemic, a condition I’d never heard of before. I learned that after a meal is consumed, food breaks down into glucose, releasing insulin from the pancreas to give a person energy. For most people, when their supply of energy is low, glucagon compensates and sends stored sugar from the liver to the bloodstream. For people with hypoglycemia, this exchange does not always happen, causing blood sugar levels to drop. A dangerously low dip can produce all of the symptoms I have just described, as well as extreme hunger, nausea, headache, weakness, fatigue, lack of coordination, irritability, and loss of consciousness.[1]

My doctor at the time didn’t seem concerned with why I had suddenly developed this condition. He just told me to keep snacks on hand. It wasn’t until eight years later, when a Lyme literate physician put together all the symptoms I’d experienced since that first episode—including frequent blood sugar crashes, flu-like aches and fatigue, fevers, migraines, hallucinogenic nightmares, insomnia, and burning extremities—that I learned hypoglycemia can be caused by the tick-borne illness babesia, which my body had been harboring all that time.

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Many Lyme and babesia patients experience hypoglycemia and also find themselves treated by doctors who aren’t familiar with the connections. As a result, hypoglycemics, like myself, also struggle with weight management, and with the frustration and embarrassment of having to interrupt social interactions or work meetings to eat, often at inopportune times.

Over the years, I’ve learned a few tricks for minimizing blood sugar crashes:

  • Avoid sugar—This may seem counterintuitive to the remedy given by my camp nurse—and to the fact that you are trying to raise blood sugar—but what I described was an acute reaction. If your blood sugar crashes like that, then, yes, sugar will help you boost it. The problem, though, is that it may boost it too high, and then you’ll just crash again later. To avoid these peaks and valleys, it’s best to eliminate sugary foods altogether. I eat natural sugars like honey, fruit, and agave nectar, but even those I consume in small quantities. I never eat sugary foods on their own.
  • Familiarize yourself with the glycemic index—The International GI Database explains: “The glycemic index is a ranking of carbohydrates on a scale of 0 to 100 to the extent to which they raise blood sugar levels after eating. Foods with a high GI are those which are rapidly digested and absorbed and result in marked fluctuations in blood sugar levels.”[2] Obviously, straight up sugar has a high GI; glucose comes in at 96. But you’d be surprised what other seemingly healthy foods rank high on the GI list: bananas are a 70, while certain apples are only a 28. Bananas still have health benefits, but an apple will keep your blood sugar stable for longer.
  • Avoid processed foods—The more a food is processed, the greater chance it has added sugar. Bread, crackers, and cookies, even if they’re gluten and sugar-free, contain lots of simple carbohydrates that will quickly turn into sugar in your body. Even eating all-natural applesauce will raise your blood sugar more than a whole apple. Keep it simple!
  • Eat a good mix of protein and carbs—Protein gives you sustained energy, while carbohydrates give you a quicker rise; I find my body needs both to function well. If I don’t eat protein, my blood sugar will crash shortly after a meal, but if I don’t eat carbs, I feel nauseous. Having a mix of both at every meal and snack helps me stay stable throughout the day.
  • Focus on complex carbohydrates—Whole grains such as quinoa and rice will keep your blood sugar steadier—and keep you fuller longer—than simple carbohydrates. I do eat sandwiches on gluten-free bread, but not every day. Instead I try to make lunches of salad with turkey or chicken, and corn chips; or quinoa with stir-fried vegetables and tofu; or brown rice with chicken.
  • Eat every few hours—Have a well-balanced breakfast, lunch, and dinner, but have a morning and an afternoon snack, too. If you’re worried about calories, these meals and snacks don’t need to be big—just enough to keep your energy, and your blood sugar, steady. Your body needs good, healthy calories to get better!
  • Carry snacks—The advice the doctor gave me long ago was sound. I always carry a protein bar and/or some nuts or fruit in my purse. Always. You never know when your blood sugar is going to drop, and you don’t want to have to make a scene in line at the post office—where there is no food.
  • Eat before you’re hungry—If you wait until you’re starving, your blood sugar is already low, and you’re going to need to eat more to bring it up. Then you’ll probably raise it too high, putting you at risk for a crash.
  • Look for sugar everywhere—Sugar shows up in the strangest places, like salad dressing, marinade, spaghetti sauce and soup. Always check labels!
  • Eat something with protein before bed—It’s not good to go to sleep on a full stomach, but a snack such as a piece of cheese or a small protein shake will keep your blood sugar steadier during the night, decreasing those 3:00 a.m. stumbles to the kitchen for orange juice.

Perhaps most importantly, keep the big picture in mind. You’re going to have some sugar. I eat a piece of dark chocolate every day. That’s made some people say, “See, you do eat sugar.” But in the grand scheme of things, I eat a very small amount; that one treat contains four grams of sugar. I choose it as my cheat, but I avoid sugar in other products, so that my overall daily intake is low. Will I have brownies sweetened with agave nectar at the holidays? You bet. I’ll probably have two. But the next week, I’ll be back to apples and nuts, salad and rice. It’s okay to indulge to a degree during this sweets-filled period between Halloween and New Year’s. But if you keep these general tips in mind, you should be in good shape.

[1] diabetes.org

[2] glycemicindex.com


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com.

Halloween: No Costume Necessary

by Jennifer Crystal

I never liked playing dress-up as a kid. I didn’t like pretending to be someone I wasn’t.

 

Sure, I could get into the spirit for Halloween. There are photos of me dressed as a blue crayon, a bag of M+Ms, as a pair of lips blowing a big pink bubble, next to my best friend who was a pack of gum. But for the rest of the year, the makeup was off and the costumes remained in a trunk. I didn’t want to be a princess, a fairy, or as was fashionable in my youth, a punk rocker. I just wanted to be me.

Then I got Lyme.

The disease that had masked itself for years in my body came raging forth with such virulence that it turned me into a bedridden shell of my former self. That former self knew resolutely who she was. She was a teacher, a skier, a runner, a traveler, a social butterfly. She had driven cross-country five times (joking that was four too many); she had backpacked across Europe and battled deep powder in the Back Bowls of the Rocky Mountains. She was fun, ambitious and full of life.

Then, suddenly, she was none of those things.

My youthful aversion to dressing up seemed to return to haunt me. Lyme forced me to be someone I didn’t want to be. I didn’t want to be sick. I didn’t want to spend my days in bed. I didn’t want to be in pain. I didn’t want to be sad and angry, frustrated and scared.

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Who does? No one likes to be sick. Everyone feels out of sorts when they have a cold or the flu. Unfortunately, Lyme is like an endless flu. For months and sometimes years patients wake each day with the same aches, the same migraine, the same fever, the same exhaustion. Lyme sucks the life out of us, and after awhile, we start to lose sight of who we are. We feel shoved into a costume of illness—one we certainly didn’t pick—and we want nothing more than to tear it off.

That costume is snug. It wraps patients like mummies. There are no zippers or buttons to break free. In reality, Halloween lasts one day—maybe two or even a week if you can find enough parties. But then you take your costume off. You can choose to put on another costume at another time, just for fun. Lymies don’t have that option.

If the outside world could see how ugly the costume of illness is—how little it resembles who we really are—they might not say, “Maybe you just need to exercise more” or “You just need to get out and do something” or “You’d feel better if you were working” or “It’s all in your head.” That fun-loving, high-achieving, mountain-conquering person I once was—the one who was hidden under illness—wanted nothing more than to go for a run, get a job, or get on a plane and leave the world of convalescence behind—but I couldn’t.

After years of treatment, I’m much freer now. The illness has not completely discarded like a costume in a trunk, but it’s still loosely hanging around my ankles. Parts of myself that were completely stifled by Lyme and its co-infections are finally liberated. I’m not gallivanting around Europe, but I can take short trips. I’m not conquering the Alps, but I can spend a morning on a local ski hill. I can’t work a traditional 9-5 job, but I can write. So while I could dress up for Halloween, I’m not going to do so. Because the only person I’ve ever wanted to be is myself. And now that she is back, I’m not going to do anything to cover her up. Been there, done that!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at jennifercrystalwriter@gmail.com.

Searching For Home When You’re Stuck in Lyme Land

by Jennifer Crystal

Where are you from? It’s a standard question, asked as casually as “How are you?” or “What do you do?” In today’s world, however, there isn’t always a standard answer.

 

I have friends who were born in one country, raised in another and now work in a third. My response—“I live in Boston, but I’m originally from Connecticut”—isn’t quite as cosmopolitan as those of my friends, but it still gives pause. It inevitably leads to the follow-up question, “So how did you get from there to here?” To that, there certainly isn’t a simple answer.

My journey from Connecticut to Massachusetts included stops in Washington, DC, Vermont, Paris, and Colorado, but the trajectory wasn’t as glamorous as it sounds. It also involved a long layover in Lyme land. Literally, that means I spent years recuperating in my childhood bed in Connecticut, the state in which Lyme was first discovered. I spent years there in what felt like an alternate universe—completely separate from the healthy, social, active life I’d once known.

In her book Illness as Metaphor, Susan Sontag wrote,

Illness is the nightside of life, a more onerous citizenship. Everyone who is born   holds dual citizenship, in the kingdom of the well and the kingdom of the sick…   sooner or later, each of us is obliged, at least for a spell, to identify ourselves as   citizens of that other place.

Lyme patients are cast suddenly and severely into that darker place. Banished by the mere bite of a tick, we are unwitting citizens of the land of illness, not wanting—and often unwilling—to claim it as home. Before I got sick, I saw home as my physical environment. As a skier, I often sought out mountain towns where I felt a connection to the land, the people, and their way of life. When tick-borne illness forced me to leave Colorado, the place I then called home—I felt displaced.

Too sick to care for themselves, many Lyme patients have to move “home”—often to their parents’ house, a place that is no longer home for most adults. Some move in with other relatives, or with friends. No matter where we land, most of us lose two homes in the process: the physical place where we once lived, and the healthy kingdom we once inhabited. And while we appreciate those who open their houses and care for us, the loss of the places and lives we called our own leaves us feeling stranded. Long-term illness is terribly lonely and isolating.

To survive Lyme, I had to turn my definition of home on its side. Feeling disconnected from my physical environment and life, generally I had to really think about myself as a voyager. What parts of myself did I bring with me, no matter where I went? What grounded me, no matter where I lived or what I could do? For me, the answer was my sense of humor, my tenacity, my faith and friends who extended bridges of  kindness.

I still rely on those things because even though I’m now in remission I’m often still in unchartered territory. Anyone who re-emerges from the kingdom of the sick finds themselves on uncertain ground. There’s a sense of reverse culture shock as we try to get back to work, to activities, to social lives. We can’t always trust how people will respond to us, especially regarding Lyme. Will the person I’m meeting be Lyme literate? Will she or he understand the kingdom from which I’ve come from?

I didn’t expect my journey to take such a sharp detour. My life hasn’t wound up where I expected it to be. But Lyme did lead me to discover a lot about myself. Most importantly, it led me to writing. I’d wanted to be a writer since I was a child, but it was a forgotten dream during my active, healthy days; I was too busy with other pursuits. Now writing is my pursuit. It grounds me more than anything else. So in a way, Lyme has actually led me home.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

Tick, Tick, Tick: The Race Against Time

by Jennifer Crystal

When I was first sick with Lyme disease, time dragged endlessly.

 

I lay in bed or on the couchtoo neurologically impaired to do “normal” sick-day activities like watch TV or read a bookand listened to the clock tick. I had more time on my hands than most people would know what to do with, but no energy to do anything with it. Time was my enemy, because I was waiting, waiting, waiting for it to pass so I could feel better. It was like watching sand drip one grain at a time through an hourglass, only to flip it over and suffer again through the same long, painful day. The same long, sleepless night. This went on for years.

Now that I am in remission, the hourglass is still my nemesis. Because I am better but not fully cured—the case for most people who suffer with long-term tickborne illness—I need to allocate judiciously the limited energy I do have. And that tricky hourglass, which once dripped slower than molasses, now seems to flow faster every day.

Sick or healthy, all of us have an hourglass. Everyone has a certain amount of energy to spend each day. In a busy, wired world, we are all running the race against time. Friends often remark to me, “Don’t you feel like time goes faster now that we’re getting older?” or, “Where did the summer go?” Now we’re heading in to fall; with shorter days that will be clipped even tighter when we turn back the clocks in a few weeks. The race is picking up.

For Lymies in any stage of recovery, that race is amplified by the fact that our energy can run out without warning. A patient can be having a good hour—the first in days!—and then, suddenly hit a wall. Doctors use this term because it is akin to the feeling marathon runners get when they suddenly lose steam due to depletion of glycogen in their muscles. Runners can sometimes combat the condition by ingesting carbohydrates; Lyme patients, on the other hand, find themselves slumped in bed. When we’re out of energy, we’re out. We have no reserves.

most-lymies_time_jc

As I started to feel better, my hourglass became more reliable. It still can run out more quickly than expected, but for the most part, I know how much energy I have and how much time I have to spend it. By my calculations, it’s roughly half the time that able-bodied people get. My energy is best in the mornings. I wake up feeling strong and clear-headed. Morning is my time to write, to teach, to exercise, to go food shopping. Not all in the same morning, mind you. Harkening back to last week’s post, I’m careful to write one morning and exercise the next, leaving the grocery shopping for its own day.

Afternoons are another story. I hit a wall every afternoon around 1:30, and must nap. The rest isn’t optional. Without it, I melt down, making the evening long and cranky and the next day worthless. Naps keep my hourglass dripping steadily, and ensure the fullest glass possible when I flip it over the next day.

To a healthy person working a 40+hour work week, naps probably sound luxurious. Yes, I am lucky to be able to take the time out I need in order to function. But it also means I lose my afternoons. If I don’t meet a morning deadline, I can’t say, “That’s okay—I’ll just finish it this afternoon.” I can read essays or run small errands later in the day, but my major tasks—especially creative work—must be done in the morning.

Whether we’re better in the morning or at night, most Lymies are trying to fit a day’s work—or a day’s living—into a few short hours. This is why we get anxious when dinner plans get shifted an hour later. It’s not because we’ve become demanding and finicky from our illness. It’s because we know the clock is ticking. If I have to be in bed by 10:00 and dinner with friends gets pushed from 7:00 to 8:00, my time with them gets cut short. I’ll probably have to leave early, because the repercussions for pushing my bedtime are severe.

It’s a hard balance, trying to be flexible while living with strict time constraints. I’m grateful to friends and family who accept and accommodate my unusual schedule. If you know a Lymie, please be patient with them. Recognize that they have very little control over their hourglass of energy. If they don’t call you back, or cancel on dinner or cut short your conversation, it’s nothing personal; it just means they’re out of sand.

Time does fly by these days, and I’m just fine with that. It means my years of waiting for time to pass are over. I may not get as much time in a day as a healthy person, but I’m able to use, instead of suffer through, the hours I do get. And that, to me, is a glass half full.


 

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Jencrystal5678@gmail.com

Tackling To-Do Lists When You’re Too Tired To Do So

When Lyme, or any chronic illness, turns once mundane tasks into the near impossible.

 

by Jennifer Crystal

With the calendar turned to September, school has started and life for many people has picked up speed. A new school year brings new schedules to juggle, and to-do lists that grow longer by the day. Everyone has a to-do list, whether you have kids or not, and even in this technological age, staying on top of tasks can be overwhelming.

For Lymies, or anyone who is sick, overwhelming can quickly shift to impossible.

In my healthy days, chores like “empty the dishwasher” or “set the table” were just part of daily life, not tasks I had to think about and plan for. My to-do lists had items like “clean garage” or “call so-and-so back,” and while some of those tasks slipped by the wayside, I could generally organize and prioritize them without much stress. All of that changed when I got sick. Suddenly, I had to choose between making the phone call or setting the table, because doing both—let alone at the same time!—would wear me out to such an extreme that I might suffer for days.

I remember telling a friend, over the phone, that I was mad at myself for having done the laundry that day, because I wasn’t able then to go to dinner with my family. “If I’d saved my strength, I might have had the energy to go out,” I lamented. She replied, “Maybe you should talk to your therapist about not obsessing over such little decisions.”

The thing is, they weren’t little decisions, at least not at the time. It was 2007; after more than a year of successful treatment, I’d relapsed. Back on antibiotics and bedridden once more, my physical and neurological symptoms were worse than they’d ever been. I struggled with basic functions like showering and preparing meals.

Now, from a standpoint of wellness, I can see how absurd choosing between laundry and dinner must have sounded to my friend. I can understand that for a healthy person, parsing out one’s energy in such minute ways can seem obsessive. But for a Lymie, it’s reality.

lymies_sick_to-do

I’ve yet to meet a patient of any illness who has dedicated energy to cleaning their garage; priorities simply shift when you’re ill. But what about things that have to get done? The phone call to insurance that must be made if you want your medication to be covered? The appeal letter that must be written when that coverage is denied again? With Lyme, these simple tasks become missions that are so overwhelming they can be paralyzing. Worse, the stress brought on by not being able to do them—but knowing you have to—can send a Lyme patient into a tailspin of anxiety, causing spirochetes to rev up and symptoms to increase. It’s a vicious cycle, and it can feel like there’s no way out.

One night during my relapse, I shared this conundrum with a different friend on a different phone call, one that proved to be worth my energy. He didn’t belittle my concerns. Instead, he suggested that I think about all of the tasks I needed to complete in a week, and then create a separate to-do list for each day. I wrote out a long list of everything on my plate, and then together we prioritized what absolutely had to get done and when. Next, we put tasks together in manageable groups. Drying my hair and ironing could not be done on the same day. If I made an insurance call on Monday, I wouldn’t make another until Thursday. The real clincher was, if something was scheduled for Thursday, I was not allowed to worry about it until then. “It’s on Thursday’s list,” my friend said. “You can’t think about it until then.”

This advice was game changing for me. Life—beyond the stressors and physical pain—became manageable, and that invariably helped me to heal faster. Now that I’m feeling so much better, I still make to-do lists in the same way, because I know doing so will help me maintain my health. I need to continue to function at a steady pace. When my mind starts to slip into worrying about what’s happening on Wednesday, I literally say to myself, “You’re not allowed to think about it until Wednesday.”

It’s good advice for anyone, really, whether you’re managing a chronic illness, a large family, or a hectic schedule. I have one more piece of advice to add: be sure to put fun things on your to-do list, too. I certainly won’t chide you for prioritizing “eat chocolate” or “smile.” In fact, I’ll say you’re allowed to worry about those things every day. Checking those items off your list may just shift impossible to I’m possible.


Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Jencrystal5678@gmail.com

Missing the Summer of Life

by Jennifer Crystal

For years during my convalescence, I had a recurring dream. It took place at summer camp where my favorite activity was water-skiing. In real life, I’d spent many summers learning to get up on two skis, then to drop a ski, then to get up on one ski. As a counselor I taught campers what I’d learned, eventually becoming a boat driver and the director of the activity. In the recurring dream, I would suddenly realize it was the end of the summer, all of the boats had been put away, and I’d missed my chance to water-ski that season.

“It’s weird that I’m dreaming about actually water-skiing,” I told my therapist when I relayed the dream to her. “I only drove the boat during my last few summers at camp, and taught other people to ski—I haven’t skied myself in years. So it’s weird that I’m not dreaming about driving the boat. Because that’s the part I really miss.”

I missed so much of my former summer life, and especially longed to feel the wind in my hair, the sun on my face, and the throttle in my hand as I pulled campers up on skis. Being stuck in bed with a PICC line that couldn’t get wet was a brutal reality compared to the idyllic summers I’d once enjoyed.

“Maybe you miss something else, too,” my therapist suggested.

“Like being active?”

“Yes, but maybe it’s also more metaphorical. What could water-skiing symbolize?”

I thought for a few moments. As a writer, I was always looking for symbolism, but I wasn’t sure what water-skiing might represent, besides physical activity. “Fun?” I finally suggested.

My therapist nodded. “Your life has not been fun for a while. You haven’t been able to kick back or enjoy the activities that you love.” She let me digest this for a few minutes, then asked, “How old are you now?”

I had just turned 27. I’d been undergoing treatment to fight tick-borne illnesses for over two years, and had wrestled symptoms for many more years before I got an accurate diagnosis. My late-twenties life revolved around medications, naps, and trips to the pharmacy, while my friends were getting married, buying houses, and celebrating promotions. I’d spent most of my birthday feeling anxious and depressed, wondering when I’d get back on track, if I’d get back to the life I’d put on hold when I got sick. I was focused on that word “back,” hoping mine would be a restitution narrative, in which the patient returns to life in the pre-illness state. When I blew out the candles that year, I wished for recovery.

you can still have

“This is supposed to be the summer of your life,” my therapist said when I told her my age. “You are supposed to be in your prime. I bet, subconsciously, that you’re worried you’ll miss it entirely, just like you missed out on water-skiing in your dream.”

“Not even in my subconscious,” I muttered bitterly. “I am missing it.”

“You’re missing parts of it now, yes, because you’re very sick. But as you continue to get better, you can still have the summer of your life. It doesn’t matter when it is.” I see now that my therapist chose her words carefully; she never said “get back.” She was focused on forward movement I couldn’t yet appreciate.

At the time, I didn’t believe her. I really thought I’d missed the boat, so to speak. But now that I am in remission, leading a full and happy life in my late thirties, I see that my therapist was right. I’m not back on track. The friends who were getting married and getting mortgages now have children and bigger houses, whereas I haven’t even met my husband yet. Some days, that freaks me out. But then I remember my therapist’s wisdom, and realize that my track is simply different. It had a significant detour, but it is moving forward again. Mine is not a restitution narrative; it is a quest narrative, in which the patient moves forward in spite of illness.

I can’t get my twenties back. As I mentioned in last week’s post, I still can’t water-ski. But I can get out on the water. I can swim, paddleboard, canoe, and kayak. I can ride in a boat, feel the wind in my hair and the sun on my face. I finished graduate school and published my first book. I teach creative writing classes, hang out with friends, and go out on dates. I’m not saying this to brag. I’m saying that despite my bleak outlook, I did still get to have the summer of my life—and I’m not just enjoying it; I’m relishing it.

Those of you suffering the winter of Lyme will get your summers, too. It will probably take longer than you’d like. It will probably be later in life than you’d like. But it will happen, and I promise you: it’s the stuff that dreams are made of.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. 

Lyme and the Olympics, Part Two: Of Dashed Dreams and New Lives

By Jennifer Crystal

In Part One of this two-part series on Lyme and the Olympics, I wrote about athletes who have survived Lyme and gone on to compete in the Games. These people are nothing short of inspirational. But what about the athletes who don’t recover from Lyme, at least not enough to return to competitive sports? Or athletes who don’t have a tick-borne illness, but trip in their final race, miss the game-winning goal, or sustain a career-ending injury? As a child, I remember watching in horror when Olympic athletes missed their dreams due to a broken skate or a torn ligament or, in some cases, by a millisecond. I wondered how those people felt. I wondered what would become of them.

As an adult who has had to revision her life around tick-borne illness, I know. I may not have lost Olympic dreams, but I did have to give up the life I lived and loved in Colorado, which was focused around skiing. The mere prospect of that, from my vantage point of bed, was terrifying. For the first few years—yes, years—that I was sick, I chose to ignore winter. Skiing had been my way of life for as long as I could remember. I spent weekends in high school ski instructing in Vermont; I attended a college that boasted its own ski hill; and I moved West after graduation for the skiing first, job second. When Lyme knocked me off my skis, I refused to get excited about snow or look at friends’ pictures of perfect powder days. If I wasn’t out on the hill, then winter simply wasn’t happening.

Except, of course, that it was. While I was so busy denying the season, I was also denying myself the chance to enjoy (as much as one can from bed) the present. One day I complained to a friend about how much I missed skiing. He asked, “Are there other, quieter activities you can do? Something new you can learn?”

His words struck a chord. It wasn’t so much that it hadn’t occurred to me to try something new—I’d tried knitting, and had gotten so neurologically overwhelmed that I’d thrown the needles at my bedroom wall—it was that I was afraid turning to a new interest would mean giving up on my old one. And without that old interest as my central focus, I wasn’t sure who I was.

I ultimately realized that giving in temporarily doesn’t have to mean giving up. When I gave into my illness, I allowed myself to reconnect with activities I hadn’t enjoyed in years, such as scrapbooking and calligraphy. I started writing. These quieter, more creative pursuits helped me to pass the time while I waited to get better.

They also helped me to realize that even though skiing was a way of life for me, it wasn’t life itself. The core parts of myself—my values, my humor, my connections with friends—didn’t disappear when skiing did. I was still Jen Crystal, even if I wasn’t Jen Crystal the Skier.

I did eventually get back on the ski slope, but certainly not in the way I had at twenty-two, when life was ski eight hours a day, go out, sleep a bit, and repeat. Of course, I missed that life. I still do. But my perspective shifted. Just being well enough to get on my boards, even if it was for one hour on the bunny hill, filled me with gratitude and exhilaration I couldn’t have known in my healthier days.

Though I did get back to a much gentler version of skiing, there are other sports I’ve had to give up entirely since getting sick. I used to be a slalom water-skier but haven’t been behind a boat in almost fifteen years. I haven’t been running in over a decade. I have, however, taken up new summer sports: paddle boarding and recumbent biking. They may not be as “hardcore” as my old pursuits, but they are fun activities that get me outside—what I missed the most—in a way that works with my illness. Had I ignored summer the way I’d once ignored winter, I would never have learned these hobbies; I wouldn’t have even known they existed.

It took me a long time to learn that life does not have to be over when you get Lyme, much as it may feel like it is when you’re bedridden. Life as you know it may be over, but that doesn’t mean life itself is over.

That bears repeating: Life as you know it may be over, but that doesn’t mean life itself is over.

Like fallen Olympic athletes who must give up their dreams, we must take the time to mourn the lives, the identities, we give up when we’re battling long-term tick-borne or other chronic illnesses. It’s an important part of the healing process. But then we have to brush ourselves off and figure out ways to reshape our lives. Because whether we acknowledge it or not, life will move forward. Instead of letting Lyme defeat us, we may as well bring it along for the ride.

To read about my first time back on skis, click here.


 

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness.

HOT, HOT, HOT: WHAT A HEAT WAVE MEANS FOR LYME PATIENTS

BY JENNIFER CRYSTAL

When I opened up Facebook on July 4th, the app showed me a photo I’ve posted every year on that day since I joined the site. The scene is summer camp in Maine—where I got my original tick bite—and the year is 2002. My fellow Head Counselors and I are gathered around a hot grill, making pancakes on one of the hottest Independence Days on record. The temperature was 105 degrees.

Decked out in red, white and blue, my friends and I are smiling in the photo. I may have put on a good face—something Lymies do far too often—but inside, I felt like I was dying. Or said in another way, I felt like I was burning up.

July 4, 2002 was a brutally hot day for everyone involved. When I re-post that photo, my friends write the same comments every time: “The hottest I ever was.” “Even the lake was hot.” “The barometer for all other hot days. Am I hot? Yes. Am I July 4, 2002 hot? No? Then I’ll survive.”

All joking aside, I remember feeling like I legitimately might not survive that scorching day. Everyone was sweating, everyone was complaining, everyone was drinking lots of water. But I’d already downed two water bottles by the time I finished cooking breakfast, and still had a headache coming on. By noon that headache had turned into a full-blown migraine; the pressure was such that I wondered if my brain might explode right out of my skull. It felt like nails were being hammered into my left eyelid, over and over. I spent the afternoon sacked out on my bed, chiding myself for not being able to suck it up and play Capture the Flag. I felt weak and ashamed—not to mention nauseous, exhausted and debilitated by excruciating pain.

What I didn’t know was that my body had been harboring tick-borne diseases for five years at that point. I didn’t know that extreme temperatures can exacerbate Lyme symptoms, and that my already compromised system was fighting a much bigger battle than typical overheating. I didn’t know that the hot sun was enraging the bacteria in my body, bringing it—and its inflammatory manifestations, like the migraine—to the surface.

Why does heat affect Lyme so severely? For starters, spirochetes can’t live at very high temperatures. This is why some Lyme patients use infrared saunas, to try and kill off—and sweat out—the Lyme bacteria. Use of these saunas is controversial, however, because they make some patients much sicker. That’s because killing spirochetes at such a high and fast rate can cause a Herxheimer reaction, leaving the body full of dead toxins that it can’t efficiently eliminate. A day in the hot sun can have the same effect.

Another reason Lymies can’t tolerate extreme temperatures, both hot and cold, is because tick-borne diseases can damage the nervous system. Some patients’ bodies have trouble regulating blood pressure and heart rate, and extreme temperatures can send those processes into distress. Common Lyme symptoms of dizziness, fatigue, and joint aches—hard enough to deal with on a moderate day—are intensified in the heat of summer or the bitterness of winter. And because our nervous systems are out of whack, we often can’t recognize that we’re getting too hot or too cold until it’s too late.

I liken this sensation—or lack thereof—to being a lobster in a slow-boiling pot. You’ve all heard the explanation for why lobsters don’t try to climb out of their cooking pots: because the water temperature is slowing rising, the lobsters don’t notice what’s happening until they’re cooked. The same is true for Lymies on hot days. I can be outside feeling fine…fine…fine…and then suddenly, seemingly out of nowhere, I am not fine. Suddenly my face is on fire, my heart is racing, my glands are leaking sweat, and I’m feeling dizzy and faint.

Lyme treatment can also intensify these effects, since many medications (especially antibiotics in the tetracycline family) cause phototoxicity. If you are on one of these medicines, you can’t be in the sun at all, but even umbrellas, hats, and sunglasses don’t protect overheating. High temperatures and humidity, rampant at this time of year, are a dangerous mix for Lyme patients.

So what’s a Lymie to do? Here are a few suggestions for keeping cool:

  • Stay in—This may seem obvious, but when healthy friends are out playing in the sunshine and you have enough energy to join them for a bit, it can be really hard to say no. Remember, though, that your energy will be depleted much faster than usual in high heat. Cooler days will come, with better energy to go with them. Don’t waste what little reserves you have on a 100 degree day. If your home doesn’t have air-conditioning, see if you can stay with a friend, or rest at a local cooling center. Fans are not enough to cool an overheated Lymie.
  • Take breaks—Even if you’re feeling okay when you’re outside, your body will likely overheat without warning. Try to give yourself breaks before this happens, by ducking in to air-conditioned buildings or sitting in the shade.
  • Hydrate—I don’t just mean order a cold drink when you stop in to one of those air-conditioned places. I mean carry water with you at all times. Make sure you have more than enough with you for your outing, no matter how short it may be. You never know when you will get stuck in line at the pharmacy, and suddenly that overheated feeling comes on…
  • Indulge in cool treats—Without breaking the Lyme diet, you can enjoy refreshing treats. You may not be able to sip a frozen daiquiri, but you can drink flavored seltzer with ice, smoothies, and all-natural lemonade; you can eat naturally-sweetened ice cream (So Delicious is my personal favorite); and you can have popsicles like Paleo Frozen Pops or Luna and Larry’s Organic Coconut Bliss Bars.
  • Take a lukewarm shower—Your instinct might be to take a cold shower, but your body will have to work harder to regulate its temperature afterwards. Let the shower do the regulating for you!
  • Put your wrists in cool water—The pressure points on your wrists, and also on your ankles, react quickly to cool temperatures, and can spread that coolness around your body. Run the veins of your wrists under a tap to quickly lower your body temperature.
  • Put a cool compress over your face and neck—Similar to putting your wrists or ankles in cool water, this trick is a quick way to lower your body temperature.
  • Invest in a cooling towel—Sold at sports shops and at stores like Bed Bath and Beyond, Lowes, and Walmart, these towels are basically the opposite of heating pads. While running your own towel under cool water works just fine, these towels are specifically designed to quickly chill you, and are made to target certain areas of your body.

And finally, as always, be gentle with yourself. You are suffering from an insidious disease that rears its ugly head when the sun blazes down. Don’t chide yourself the way I did. You are not weak. You have angry spirochetes in your body, and if you treat them kindly during the heat wave, they just may let you go out to eat lobster, instead of becoming one. Then you can smile in the photo for real.

The Bigger Picture: Part Two By Jennifer Crystal

Taking Care of Our Overall Health Within the Context of Chronic Lyme

In the first section of this series, I cautioned that not every ache and pain is Lyme disease; we must be sure to take care of our overall health, even when we are consumed by tick borne illness. What we also must remember, though, is that when something ailing us isn’t Lyme, it is affected by our tick borne illness, and vice-versa. When you have a chronic illness, that condition must be considered when making all other medical decisions.

Take the common cold. This age-old, mucus-infested ailment is begrudged by all. Whether you have a chronic illness or you’re otherwise the picture of health, getting a cold just plain stinks. But whereas most people can shake that cold in a week, Lymies and people with other ongoing illnesses have a much harder time fighting it off. Basic illnesses are not basic for us; they are possible cause for our underlying conditions to flare, because our immune systems are already compromised.

A Lyme patient can have a cold for a month, which can be difficult for healthy people to understand. Whereas most people’s symptoms gradually improve, a compromised patient may find the mucus growing greener and the cough getting deeper. Before long, the cold has turned in to an upper respiratory infection. And this is where Lymies can get into trouble.

Because most of us are on long term antibiotics, we have to keep those treatments in mind when considering management of an acute infection. This is not a problem when our primary care physicians are Lyme literate. They’ll be sure to put us on an antibiotic in a different family than the ones we’re currently on, for maximum effectiveness. I’ve been on oral antibiotics for years, and have never had a problem clearing up an acute infection with a different antibiotic.

The problem, though, is that it’s not easy to find a Lyme literate primary care doctor. When you’re sniveling with a sinus infection, you want to be in good hands. The last thing you need is someone who doesn’t understand your long term treatment protocol, or, worse, someone who questions why you’re on that protocol at all. It’s hard enough to fight that fight when you’re feeling sick from Lyme; add another infection on top of that, and you’re quickly trampled.

Not only do doctors need to understand how a new antibiotic will work (or not) with your current regimen, but they also need to understand how new treatment might affect your Lyme. Let’s say you didn’t have a cold, but your Lyme doctor suddenly decided to add an antibiotic to your usual cocktail. You might have a Herxheimer reaction; the same could therefore happen when an antibiotic is used to treat an acute infection.

We also need to keep this big picture mindset when going through “basic” medical procedures. Because of my tick borne illnesses, I know that it will take me longer than most people to recover from my wisdom teeth extractions. I also know that spirochetes like to hang out in gums, and that this surgery puts me at risk both for infection and for a Lyme flare up. Luckily, my doctor knows this too, and so she’s put me on a prophylactic antibiotic that works well with my usual treatment protocol and will help protect me through this procedure.

The key is making sure your primary care physician understands tick borne illness, and your management of it, before you get an acute infection. If your primary care doctor doesn’t believe in long term Lyme or doesn’t seem confident in your treatment, find a new doctor. I know that’s much easier said than done. For me, the important thing is not so much that my primary care doctor is Lyme literate (though clearly that’s the ideal), but that she’s willing to learn and willing to talk with my Lyme specialist to discuss treatment plans. I need to her to be willing to talk to me about what works best for me, and not jockey with me for control of my own health. Open-minded doctors are at least a little easier to come by than Lyme literate PCPs.

And, of course, as with your ongoing battle with tick borne illness, you are your best advocate. We patients are the front line of Lyme literacy. We need to understand our own illnesses and medications so that we can readily explain them to doctors. We need to keep tabs on what treatments have been successful for our past acute infections, and speak up when confronted with new ones. We must remember that tick borne illnesses are part of the makeup of our bodies; when acute infection or routine medical procedures strike, we need to keep that big picture in mind, for the sake of our overall health.

The Bigger Picture By Jennifer Crystal

The Bigger Picture: A Two-Part Series on Taking Care of Our Overall Health Within the Context of Chronic Lyme

When you have a serious case of tick borne disease, it’s natural to get completely immersed in the world of that illness. You are reminded of your aches, pains, and limitations the moment you wake up (provided you ever got to sleep; some patients get the reminder twenty-four hours a day). At the most critical lows, it’s impossible to think of anything else. When it’s a fight to lift your head off the pillow, take a shower, or swallow medication, you have no energy to consider movies or books or current events or what might be happening at work.

Or what else might be happening in your body.

Tick borne diseases are so all-encompassing that they can seemingly explain every symptom we feel. And many, if not all, of these symptoms are Lyme related. Lyme is called The Great Imitator because it manifests in such a variety of ways that it is often mistaken for other syndromes such as Chronic Fatigue, Rheumatoid Arthritis, Lupus, and Multiple Sclerosis. Once an accurate tick borne disease diagnosis is made, patients know that their joint swelling is a result of spirochetes; that their hypoglycemia and nightsweats are caused by babesia; and that their stretch marks and spiked fevers are due to bartonella.

The problem is when our typical symptoms start to present atypically. Then we have to wonder, is this just Lyme doing something new, or is it something else entirely? If a Lyme patient usually has achiness in his elbows, sudden pain in his knee could easily be explained away by spirochetes moving to that joint. If a Lyme patient has daily headaches, and one day that headache becomes a migraine, she’s going to assume that the increased pain is caused by a flare up of her Lyme.

Tick borne disease patients generally know their bodies, and their symptoms, so well that we can self-diagnose when our symptoms get a little wonky. We keep fastidious logs of our ailments, and if we can’t remember if we’ve experienced something before, we can go back and check. Often, we have. Often, new or increased aches and pains are associated with our Lyme, and we can’t worry over every single one, or we’d make ourselves crazier than we already feel.

The question becomes, when is something not Lyme? With a disease that affects virtually every system of the body, from the heart to the gastrointestinal tract to the central nervous system, is there any symptom that doesn’t fall under Lyme?

The answer is yes.

Not everything is Lyme related. It’s hard to believe that, or even consider it, when Lyme and its symptoms have you pinned to the bed. But falling into that kind of tunnel vision can be more dangerous than Lyme itself.

I’m reminded of a commercial that ran a few years back, in which a women had tragically just lost her sister. The women tells us that the sister, who had a family history of breast cancer, did monthly self breast exams and got regular mammograms. How then, the viewer wonders, could this woman have died of breast cancer?

She didn’t. She had heart disease.

When we are totally focused on our main health event, we can miss a silent circus going on under the surface. Because Lyme patients are so sick, it’s easy for us to forego routine procedures such as mammograms, prostate exams, and dental cleanings. I’ve certainly said, “Oh, I’ll deal with that when I’m healthier” or “Eh, that’s just a checkup; it can wait. I have to focus on my acute illness.”

The problem is, unless Lyme is diagnosed and treated right away, it rarely is acute. When we suffer from long term Lyme or any other chronic illness, we can’t let the rest of our health fall by the wayside. We need our foundational health more than ever, so that we can combat our chronic illnesses from the strongest possible baseline. And that means getting annual checkups, going in for dental cleanings, and calling the doctor when new, atypical symptoms pop up and persist. It means taking care of “smaller” health problems when they arise.

This is a case of do as I say, not as I do (or did). When I was in college, my dentist recommended I get my wisdom teeth removed. “They’re not impacted,” he said, “so it would just be a preventative measure.” He cautioned that if I didn’t get them out, the teeth might give me trouble down the line. At the time, I was facing two other surgeries and dealing with the symptoms of undiagnosed Lyme; who had time to think about “down the line”?

Fifteen years down the line, I got pericornitis. One wisdom tooth got infected, and another isn’t far behind. This past February, the teeth had to come out. The surgery was no longer elective. Suddenly I was faced with scary questions: how would the extraction affect my Lyme, and vice-versa? Read on next week for the answers, and for more on the relationship between Lyme and other health issues.

Valentine’s Day: a Celebration of Self-Love By Jennifer Crystal

This week my mailbox started filling with cute cut-out cards and cupids. Stores are selling red and pink balloons and boxes of chocolates, and roses are suddenly a dime a dozen. Despite temperatures that would lead us to believe we’ve skipped February and headed straight to March, all other signs point to Valentine’s Day.

Many single people would hardly call Valentine’s Day a time of celebration. For them it’s an anti-holiday, a day to hide out and sulk in front of a sad movie, or a day to dress in black and ignore the world. It’s a day to hate on couples.

At times I’ve fallen prey to this bitter thinking, especially during the bedridden years when I wondered who would ever love me in such a sickly state or how I would ever have the energy to be in relationship.

But time has taught me that Valentine’s Day is not just for couples. It’s simply a day about love. And love can take many forms. We love our friends, we love our families, we love our children and, in theory, we love ourselves.

I say in theory because even though this one should be the most obvious, it is often the most overlooked type of love. Or the most spurned. In truth, self-love is the purest form of love, and therefore should be the most celebrated.

This concept is snubbed by many, but it’s an especially tough one for Lymies and patients with other chronic illness to get their heads (or hearts) around. Many of us spent years searching for an accurate diagnosis—some still are—and in that time we heard messages such as, “It’s all in your head.” “You’re a hypochondriac.” “You’re just lazy.” “Don’t you even want to get better?” Scornful words like these can roll off the tongues of doctors, nurses, family and friends without much thought about how they’re interpreted or internalized. Getting barraged by such messages weighs on a vulnerable patient’s psyche until s/he starts to believe, Maybe it is all in my head. Maybe I am just crazy. These thoughts fester into, Everyone is so sick of me being sick. I’m such a burden on everyone. And it’s only a matter of time before that becomes, I hate myself.

For people who have been sick, often without answers, for too long, self-hate doesn’t just stem from exterior messages; we often breed it ourselves, too. It’s so easy to blame ourselves for getting sick. I spent more time than I’d like to admit beating myself up for not catching my symptoms sooner, for not getting to a better doctor sooner, and, most importantly, for not taking better care of myself earlier. I believed for a very long time that my illness was my fault. If only I’d rested more when I had mono; if only I hadn’t run myself ragged in college; if only I hadn’t worked at summer camp that first year I was sick…woulda, shoulda, coulda.

The irony here is, what those messages are actually saying is, If only I’d loved myself more.

As much I hate to admit it, there’s some truth to that. I know now that I didn’t cause my own illness. I didn’t put a tick on me and tell it to bite me. I couldn’t have stopped multiple infections from raging through my body and brain unchecked for almost a decade. But I could have taken better care of myself; I could have been nicer to myself; I could have been more forgiving of myself; and that might have made the journey to wellness just a little easier.

It takes time and practice to shift the messages in your head to ones of self-love, but I can guarantee that when you do, your body will thank you for it. I literally had to switch You’re so stupid, Jen Crystal! to, I love you, Jen Crystal! I’m not suggesting I became a narcissist, but I did start recognizing and rewarding myself for small accomplishments. I’d tell myself things like, You slept for an hour today, Jen Crystal! You’re getting there! Sometimes I complimented myself for surviving an hour. For surviving a minute.

In my high school health class we used to talk about Private Victories—small accomplishments that meant something to us personally. As soon as I started recognizing Private Victories related to my Lyme, rather than berating myself for Private Mistakes, my body started to heal much faster. It started to trust that I would support it on the journey, not beat it up.

Over time, I’ve learned to love myself. Even for my mistakes. Even for not taking care of myself sooner. I’ve learned to love my body, even if it’s riddled with spirochetes. I don’t love the bugs, but I do love my body for working so hard to fight them. I’ve thought about how kind and gentle I would be to a friend in my situation, and I’ve tried (and am still trying) to turn that compassion on myself. It’s not always easy. But when I hear myself start to self-flagellate, I know I can take control of the situation and change the message to one of self-love. And that makes me feel more powerful than even Cupid.

10 Top Myths About Lyme Disease

Reclaiming My Identity: Part Two By Jennifer Crystal

In last week’s poem “Never Say Never”, I wrote about getting back on my skis for the first time since being sidelined by tick borne illness. It was a proud, humbling, and cathartic moment, one that brought me to tears and ended with me saying, “I am back.”

Unfortunately, the story didn’t end there. It was my happy ending movie moment, but only movies end. Real life goes on.

After completing that ski run on the bunny hill (and resting for several days afterwards), I continued with physical therapy. I worked up to other outdoor activities that I’d missed, such as kayaking, swimming, and canoeing. I even tried new sports like paddleboarding and recumbent biking. Though I didn’t have the stamina I had before Lyme disease, I was happy to be leading a relatively active lifestyle again, and to be able to enjoy activities like bicycling in an adaptive way. I even got past the bunny hill, heading straight to the top a small mountain outside Boston. I didn’t ski the moguls there, but I did take several long runs, and I felt more like my old self than I had on that first day back on skis.

So far this sounds like the continuation of a happy ending, right?

Fast forward a year, to the Middlebury College Snow Bowl. I’d landed a dream job teaching a winter term course called Healing Through Writing at my alma mater, and couldn’t wait to get back to the skiing grounds of my college days. When the first weekend arrived, I packed up my gear, drove the short distance to the “Bowl”, carried my skis (which felt much heavier than they used to) to the base of the mountain and looked up.

In my college days, I hardly would have called the Bowl a mountain. It’s one of Vermont’s smaller ski areas, and my friends and I used to ski straight down from the top without stopping, only to circle back on the chairlift and do it again. And again. And again. We’d spend entire Saturdays tearing up those ski runs, or pop over for a quick, easy afternoon after class.

But as I looked up at what now seemed like a much larger mountain (had it grown?), the task ahead didn’t seem so easy. For a moment I considered gliding over to the novice area, an easier side of the mountain with its own chairlift. My old self chortled from somewhere inside me, Please! You never ski over there. It’s only for beginners.

So I clicked into my skis and boarded the main chairlift. The ride to the summit seemed much longer than I remembered. As the chair rode higher and higher, I grew more and more anxious. Before my eyes, the tiny Snow Bowl of my youth was growing into a gargantuan beast that I wasn’t sure I could conquer.

The wind was whipping when I finally dismounted at the summit. I pulled my neckwarmer over my face so that it reached under my goggles, with only the tip of my nose exposed so I could breathe. I hadn’t used this equipment on the bunny hill, or even at the small mountain in Massachusetts, which, I quickly recognized, was only about half the size of the Snow Bowl. As I made my first few turns, I realized something else: the Snow Bowl was much steeper than I remembered. I stopped and tightened my boots, something I also hadn’t needed to do on my previous post-illness ski runs.

I made it down that run, but “made it down” is never a term a skier wants to use. We are masters of the boards strapped to our feet, masters of our domain. We meet the challenge of a run with our skill and strength, and we like to say that we “tore it up” or “shredded some serious snow.” “Making it down” implies that the mountain conquered us, and that’s not a power that a die-hard skier wants to relinquish.

To be fair, it’s not like I took my skis off and walked down. I did ski the run. I just didn’t do it to the best of my ability, and that worried me. I’d never realized how much leg strength it took to make tight slalom turns on a steep pass, or how much power I needed to lean forward in my boots to better control my skis. In the past, I’d broken down those elements for ski school students whom I taught, but never had to think about them myself; they were second nature. Suddenly, my natural ability became very cerebral, and I didn’t like having to think about technique when I was skiing someplace as simple as the Snow Bowl. I didn’t like that I had to stop every few turns to rest. I didn’t like that my legs burned at the end of the run, and that I was too tired to get back on the lift to take another.

I started to wonder if I was really still a skier. Could I still give myself that identity, when I struggled to make a run that “real” skiers would fly down if not scoff at? Maybe I wasn’t back at all.

Skiing has always been a great endorphin release for me, and I used to leave the mountain glowing with exhilaration. That day, my cheeks didn’t just glow; they flushed so red from the intense workout that they were almost purple. Inside, they burned with shame.

That afternoon, I lied down for my usual nap, but could not sleep. It wasn’t just that my brain was tossing and turning with discouragement. It was that my body became so agitated from the over-exertion that it could not calm down. My breathing grew short and my limbs tingled as my nervous system kicked into high gear.

I ended the day feeling scared, jittery, and exhausted.

The following weekend, my housemate asked if I would ski with her at the novice area of the Bowl. I hesitated. I wasn’t sure if my body had recovered enough from the previous weekend. I didn’t know if I could take another disappointing day on the slopes. I didn’t know if I was really still a skier.

“It’ll be easy,” my housemate coaxed. “That side of the mountain is nothing for you.”

Her words spoke to my old self, and so my old self, stuck inside my new body, agreed to go.

Like that first day on the bunny hill, this particular morning was a bluebird day. My housemate and I chatted as we rode the lift, which was shorter than the main lift but not as small as I’d remembered. In fact, it seemed about the same size as the lift that went to the summit of the mountain outside Boston. Below us was a sea of fresh snow that sparkled under the sun’s strong rays. A skier whooshed by and suddenly tumbled; we watched as he dropped his poles and both his skis popped off.

“Yard sale,” I said. “Looks like he caught an edge.”

My housemate laughed. “Is that skier lingo?”

I smiled and clicked my skis. Maybe some of this was still second nature.

“You look so happy,” my housemate commented. “You’re totally in your element up here, aren’t you?”

My smile turned into a grin.

The “simple” runs—plural—that my housemate and I took turned into beautiful courses of wide, arcing turns, and even some tight slalom turns, too. I leaned forward. I felt in control of my skis. And I saw that this area of the Bowl I’d once made fun of was now just my size. I could ski it—really ski it—the way I used to ski the toughest trails of Colorado. As I swooshed, I remembered an email I’d gotten from a friend who’d watched video of me skiing that first bunny run. He’d written, “I’d recognize those turns anywhere.” I remembered that email and understood that my turns were still mine, whether they were on the bunny hill or Vail’s Back Bowls.

Maybe this journey wasn’t about getting back; it was about moving forward in spite of all I’d been through. It was about reclaiming parts of my old ski identity that could help define my new one. And with that realization, my whole perspective shifted. I suddenly didn’t mind that I had to pace myself. That I had to stop a few times on the way down, or sit in the lodge for a few minutes before continuing on. The point was that my movie—my ski life—was continuing on. And I once again was, truly, playing the lead.

A year later, this ski girl is back teaching at Middlebury, and back enjoying her new favorite side of the Snow Bowl. Here’s a video to prove it! (Be sure to turn your volume up so you can hear the narration).

10 Top Myths About Lyme Disease

Reclaiming My Identity: Part One of a Two-Part Series By Jennifer Crystal

This week, my creative writing students read Taylor Mali’s poem “Tony Steinberg, Brave Seventh Grade Viking Warrior”.

We then wrote our own poems, mirroring Mali’s “Have you ever…?” style. What would yours be? Here’s mine:

Never Say Never

Have you ever skied a bunny hill
like it was an Olympic mogul run?
Looked down it
and wondered,
Can I make it?

I have. And it was a terrifying thing.

It was also a beautiful thing.

A beautiful day
Sunny, forty degrees
Big puffy clouds, bright sky—
A bluebird day,
we used to say
in my old Colorado life.

When I lived there I scoffed at bunny hills
at East Coast skiing
“I’ll never ski there again!”
I zipped for hours through
powder that swished and sushed off my skis
like fairy dust.

Have you ever
cycled thirty seconds on a stationary bike
only to be felled by a migraine?
Felt a thick syrup of spirochetes spiraling through your body,
Swarming around your brain,
Slowing your forward motion like mud?

I have. And it was maddening.

I’ve laid in bed for days
To finally get back to physical therapy and
cycle thirty seconds on a stationary bike
Again.

And then forty-five seconds.
A minute.
A minute fifteen.
A minute thirty—

Another migraine.
Another week in bed.

Another several weeks to
cycle thirty seconds on a stationary bike
And start again
And again
And again—

Working up to
cycling twelve minutes on a stationary bike
Yanking pulleys and
Weights
Stretching
Squatting
Lifting

Until one fine day
my physical therapist said,
“We’re working towards skiing, you know.”

Have you ever cried at the sound of such words?
Because what you heard was, We’re working towards you, you know.
The you who
Lived
Breathed
Skiing as a way of life.

I have. And it was one of the best moments of my life.
Next to actually gazing up that East Coast bunny hill
after successfully skiing it
Swishing
Sushing
Feeling
Legs pulsing
Oxygen coursing
Tears running
Heart singing
for the first time since being
silenced by sickness—

Looking up that mountain and thinking,
I conquered that.
I am back.

I have. And you will, too.

10 Top Myths About Lyme Disease

Staycationing By Jennifer Crystal

During last winter’s Snowpocalyse, posters advertising trips to Florida started appearing around Boston. As I trudged through ten feet of snow in big boots, I caught glimpses of people in bathing suits and flip flops lounging by a swimming pool. The advertisements made me cry. Not just because my city was under weather attack, but because I knew I couldn’t take a vacation South, no matter how badly I wanted to.

The same is true for many people, of course. Financial limitations, work obligations and other commitments prevent even the healthiest people from just jetting off on a whim. For Lymies and patients with other debilitating illnesses, the limitation is more physical. Tick borne illness can prohibit getting out of bed, let alone getting on a plane.

As I mentioned in a summertime post, the very idea of travel can be overwhelming for Lymies. No one likes to go anywhere when they’re sick. Imagine the worst flu you’ve ever had. If someone offered you a trip to the Carribbean while you had that flu, would you be able to go? Even if you managed to drag yourself onto the plane, would you enjoy the trip? For those of us managing what feels like an eternal flu, the fatigue of long flights or car rides, coupled with travel schedules that break up our usual routine and the literal baggage we carry—suitcases full of specialty foods and medicines, sometimes including intravenous supplies—can turn a vacation into an exhausting chore.

Travel is expensive. It uses up physical resources Lymies don’t have (returning to the idea of the spoons post, traveling from, say, Boston to Florida would cost me weeks’ worth of spoons). Lymies often also get roadblocked by guilt over the monetary cost of a vacation. Since many people struggling with Lyme can’t work or support themselves fully, they don’t feel right about taking time “off”, or about spending money to do so.

The thing is, everyone deserves a break once in awhile. Nay, we need it. Healthy people with full time jobs have (in most cases) weekends off or a week or two of scheduled vacation a year, for the express purpose of rejuvenation. The problem with chronic tick borne illness is that it is, well, chronic. You can’t ever take a break from it. When I was bedridden and suffering daily with migraines, joint aches, insomnia, and brain fog, I would have given anything to get a one day break from it all. Even a one hour break from it all. Sometimes I wished I could just take my pounding head off and rest it on the nightstand for awhile. Now that I’m in remission, I’m grateful to have more breaks than not when it comes to Lyme symptoms, but I’m ever mindful of their ability to flare back up. I know that a big trip is a surefire way to make that happen.

So how can Lymies get the break they need?

I invite you on the following “staycation”:

• Find the sunniest spot in your room or home. Pull a comfortable chair—preferably a recliner, if you have one—into that spot or in front of that window. Stretching out in that chair is almost like sitting in a chaise lounge, and you only have to move a few feet to do it. You can even line the chair with a beach towel, for authenticity. (Lymies who are on sun-sensitive medication should be sure to wear a hat and sunscreen, or tilt their chairs away from the sun).

• Put on some sunglasses. Whether you’re taking sun-sensitive medication or not, this is a vacation, and you deserve to look like a movie star as you sit “pool side”.

• Fill a rubber basin with warm water and some soothing bath salts, and place it at the foot of your recliner. Et voilà! Your feet are in the ocean. Bonus: no jellyfish!

• Fill a glass with seltzer and 100% fruit juice, and garnish it with a slice of fresh fruit or even a little umbrella (available at many supermarkets and party supply stores). You may not be able to have a daquiri (or even a virgin daquiri, because of the sugar), but you can certainly have a vacation-style drink in hand!

• If you are able to listen to music, put on something light or classical. When my brain was in overdrive, I found that soft instrumental music—with no lyrics—was good in small doses. You might even download a recording of ocean waves.

• Get a couple of light entertainment magazines on whatever interests you, be it celebrity gossip or sports. For a long time I couldn’t read at all due to brain fog and confusion, but when those symptoms started to go away, I started with small amounts of very light reading, such as one paragraph of a People magazine story. At first I felt like, if I can read, it should be a newspaper or something meaningful. But that type of material was too hard for me to comprehend at first, and left me feeling discouraged. Work your way up through lighter material as a way to recondition your reading “muscles”. And remember—you’re on vacation here! Your readings should be light and fun.

• Have someone pick up a home manicure and pedicure kit for you. Don’t scoff at this, male readers—these “spa” treatments feel great for everyone. You can do them yourself, or better yet, have a friend or caretaker help you. In my sickest days, I used to have my toenails painted crazy colors, with glitter on top. If I couldn’t go out dancing, at least my toes could look the part.

While you’ll still have to deal with your symptoms while on this “staycation”, the shifts it allows—literally to a new spot in the room or house, and figuratively to a mentality of fun and relaxation—might just make those symptoms slightly more bearable. No matter how sick you are, you deserve to dip your feet in the ocean, to listen to relaxing sounds, to feel the sun on your face. You deserve to feel like you’re having fun for an hour or a day or a week, even if it’s not in a tropical destination. So, leave your bags at home, and have a great trip!

10 Top Myths About Lyme Disease

Laughter Really Can Be the Best Medicine By Jennifer Crystal

January can be a tough month. With the holidays over and temperatures dipping to a deep freeze, the horizon can look as bleak as frozen tundra. This time of year is difficult for many people, not just those with chronic illness. The antidote I propose, humor, works universally.

Humor is known to reduce stress and anxiety. It’s said to help boost the immune system. In a 2005 Reader’s Digest article, Dr. Oz wrote, “When people use humor, the autonomic nervous system just tones down a bit to take it off high gear, and that allows the heart to relax.” Some hospitals now have “humor rooms”, and more and more “Laughing Clubs” are popping up around the nation.

That’s all well and good, I can hear you saying, but there’s nothing funny about chronic tick borne disease.

Fifteen-plus years with this insidious condition has taught me otherwise. Or rather, friends on the outside have taught me that it’s possible to look at my situation from a humorous perspective. At crucial low points in my journey, these friends put a twist on Lyme that turned my despair to laughter.

I’ve written before about the medical student I met in a bar who asked me quite seriously, “Are you sure you don’t have lemon disease?” When I heard the clause “Are you sure…”, I was prepared to battle with yet another doctor who, knowing nothing of my medical history, was about to question my diagnosis. What he actually said caught me so off-guard that I was, at first, stunned into silence. And then I burst out laughing.

As I often tell my writing students, humor opens people up, giving a writer the chance to then hit readers with something more serious. In this case, the joke about lemon disease let me know that this medical student appreciated the frustration of what I was expecting to hear, and recognized that taking a humorous approach to that expectation would open the possibility of a more serious discussion. I’d like to think the student and I both learned something that night: he about the patient’s perspective of tick borne disease, and I about humor’s power to disarm.

Another example happened many years earlier, when I had to step away from friends who were visiting, to take a nap. I hated missing any time with them, and felt silly and childish for needing to lie down. Ever the comic, my friend Pete diffused the situation by asking, “Do deer take naps, too?” Suddenly we were all laughing uproarously at the thought of tick-hosting animals settling down on the side of the road, tucking their front legs under their bodies like pillows. I traipsed off for my own nap with a smile on my face, which certainly helped me to rest easier.

My favorite example is from the eve of emergency gallbladder surgery in 2005. My intravenous antibiotics had unknowingly created gallstones as big as rolls of duct tape, causing excruciating pain and the dangerous possibility that my bile duct could burst. I was terrified. My dear college friend Elise listened to me cry on the phone, and tried everything to calm me down. Despite her best efforts, I was not soothed. Finally, Elise hung up and called her husband Mark, apparently telling him, “We need humor here.”

An hour later the following email appeared in my inbox:

The Top Ten Reasons Having Lyme Disease is Cool

By Mark Wilson

10. Arthritis, depression, organ failure, and insomnia—All For One Low Price!

9. You share something uniquely in common with Darryl Hall and John Oates (and now, updated version, Avril Lavigne)

8. Free research for your book about Lyme disease

7. “Finally! An excuse to quit work and live in my parents’ basement!”

6. Getting out of doing the dishes, because you can’t get your PICC line wet

5. Having people say, “Lyme disease—that’s the thing you get when you drink too many margaritas, right?”

4. Getting to hear people tell you, “Ohhh no, you don’t have a horribly debilitating disease! You’re just feeling a little sad right now.”

3. “Oh my God, sleep is sooooo overrated!”

2. It’s the official disease of the British Navy! (Limeys)

And the Number One Reason Why Having Lyme Disease is Cool:

1. If Jen Crystal has it, it must be cool!

That list was written over a decade ago, and it still makes me smile. Not only did it calm me down, it told me that my friends really got what I was going through. They understood my pain, frustration, and isolation enough to be able to make light of the situation. I felt reassured on so many levels, and went into surgery with a newfound calm.

While these examples helped me to poke fun at Lyme itself, humor of any sort can really be great medicine. When I was living back at my parents’ house and too sick to do anything on New Year’s Eve, my college friends started visiting me on New Year’s Day. They’d caravan to Connecticut from whereever they’d partied the night before, bringing hugs, smiles, and funny stories. They regaled me with tales that left me clutching my sides. I remember after they left the first time, my mother remarked, “I can’t remember the last time I heard you laugh like that.” The joy from those visits was perhaps the greatest tonic I got all year.

I recommend bottlefuls of this same “medicine” for everyone, especially during the dark days of January. Go ahead—laugh in the face of winter. All the cool kids are doing it!