Tag Archives: chronic illness

What to Do When You Hit a Plateau in Treatment

By Kerry Heckman

My numbers won’t budge. Every month I go in for a blood test and every month I get an email from my doctor stating that my inflammatory markers are the same. The numbers are not so high to cause a panic, but they’re not low enough to signal any real improvement either. I’ve tried everything from meditation to medication, but nothing seems to work. Each month I pray the numbers will drop and I’m devastated when month after month they stay the same.

I’ve put in all the work; there’s been no stinting. I’ve been in treatment for three years. I’ve changed my lifestyle, my diet, and most difficult of all, my mindset. But I keep coming up short. There’s no doubt I’m better. My bedridden days are mostly in the past, and the pain that keeps me up at night (painsomnia, I call it) happens once or twice week instead of every day. Another marker of my improvement is after treatment my herxheimer reactions are greatly diminished. These are positive trends, but still I am not where I want to be. I want clinical proof that my recovery is real. I want to know unequivocally that I’m heading toward remission. I’ve  been at this dreaded plateau for months waiting to break free. I anxiously await the day when my inflammatory markers take a dramatic drop.

Your plateau may be different than mine. Maybe you, too, made big improvements in the beginning and now it’s tapering off, or maybe you’re stuck waiting for any minuscule improvement at all. Either way the lack of progress may be the hardest thing to bear.

All this was weighing heavily on me. Then one day I started thinking about actual plateaus in nature. Consider for a moment you are climbing up a mountain and reach a plateau. You’ve done the grueling work of going up the mountain and now you are walking on level ground. You are still moving forward, that hasn’t changed, but you’re not increasing your elevation. Maybe that’s what plateaus are in treatment—a leveling off that doesn’t feel like progress, because you aren’t climbing anymore. But you have achieved an incremental improvement in your recovery.

This bit of visualization changed the way I thought about my lack of headway, though  there were still some questions I needed to ask myself— questions you may need to  ask yourself as well:

Q: Have I really plateaued or is my progress just going slowly?

A: With Lyme disease the improvement can be slow . . . very slow. As they say, any progress is good progress. If you feel comfortable with your treatment protocol, you may need to practice patience and remember you are getting better. However, sometimes the progress is too slow and even if there is incremental improvement you may want talk to your doctor about exploring ways to speed up your treatment plan.

Q: Have you hit a plateau before? What helped jumpstart my healing?

A: If this has happened before, what was it that made the difference? Maybe it’s a new supplement or an increased dose of medication. Maybe your thyroid or adrenals are out of balance and need attention. Try to remember back to what helped you before and try it again. It may help to keep a journal about what you think is and isn’t working for you.

Q: Do I need to change my treatment or ride it out?

A: As I said, with Lyme getting better takes time. Ask yourself if you think your current treatment plan is sufficient to to get you better. This is a good place to use your intuition. If you feel skeptical every time you meet with your doctor that might be your body telling you something.

Q: If I plan to stay the course when will I know it’s time to adjust?

A: Give yourself a timeline—six months, nine months—for when you want to reevaluate. Verbalize your timeline to your doctor, so she or he knows what you’re thinking. Ask if there is a test that can be run at that time to compare where you were before to where you are now.

Q: Am I testing too often?

A: If you’re like me and your numbers aren’t budging, maybe it’s time to put more space between tests. This depends naturally on what is medically advisable. But I I did realize that the constant testing was causing me frequent disappointments, which weren’t good for my healing. I have since decided to go from once a month to once every other month for my bloodwork and focus on other things in the meantime.

Q: Is there something else I could do to move forward?

A: A plateau is the perfect time to reevaluate your habits. Perhaps it’s time to add more nutrients to your diet or increase detox. Have you always wanted to try a complementary therapy? Now may be the time. Or are there other options?

Q: Is this a good time for a healing pause?

A: Have no doubts, recovery from Lyme treatment is a full-time job. It seems like there’s always something else you can try, but is that the best thing for your body? This could be an indication that it’s time to take a break from all the intensity and let your body rest at the top of the mountain.

Take some time and ask yourself these questions. Get quiet and let your intuition speak. There are few doctors, medications, or therapies that can give us as much insight as our own common sense. Remember the image of the mountain and keep walking forward on the level ground of the plateau—the uphill slope may be only a few steps ahead.


kerry heckman

Opinions expressed by contributors are their own.

Kerry J. Heckman is a licensed therapist and author of the healing and wellness blog Words Heal. She was diagnosed with chronic Lyme disease in 2016.

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

How to Show Someone With an Invisible Illness That You “See” Them

by Kerry J. Heckman

Invisible illnesses like Lyme disease are not always detected by your outward appearance. Here are 7 ways that you can show someone with an invisible illness that you “see” them.

Last summer Global Lyme Alliance sponsored an event in Chicago called the Sublyme Soiree. I invited my brother and sister-in-law to come with me. During the event, a doctor spoke about the impact of Lyme disease on his patients. I was so grateful that my family had made the effort to come to the event and that they were able to learn about the impact of Lyme from someone other than me. It was the first time in a long time I truly felt seen.

Invisible illnesses are not easily detected by our outward appearance. Because our illnesses are invisible we often feel invisible to the outside world. We are often mistaken for being “all better” or “not very sick at all.” In addition, many people with invisible illnesses, like chronic Lyme disease and autoimmune disorders to name just a few, experience flare-ups followed by periods of relief, which leads to further misunderstanding. If you have a loved one who has an invisible illness here are some ways you can show them that you care.

Never underestimate the power of snail mail

You know the feeling when you open up your mailbox and among the bills and junk mail, there is a card with your handwritten name on it? It always brightens your day. It’s nice knowing someone took the time to pick out a card or postcard at the store, write in it, buy a stamp and send it in the mail. Sending a card, postcard, or care package to someone who is chronically ill shows you care. Who knows? Maybe your card will arrive when the person is having a bad day and your compassion will make them feel less isolated.

Find a way to have fun on their terms

If you invite someone who’s chronically ill to an amusement park they are likely going to say no. If you invite them to tea, a short walk by a lake, or to a movie, they are more likely to say yes. It depends on their stamina. Some days are better than others. Try to think of an outing that doesn’t require a lot of energy. If the person is homebound, maybe you can binge stream a television show with them while sharing a pint of ice cream.

Remember chronic illness is inconsistent. On a good day people with chronic illness are able to do more but on a bad day, they may not be able to leave the house. The problem is we don’t know when we will have a bad day. It makes it difficult to plan, so try to be understanding if the person needs to change or cancel plans.

Never question a symptom or diagnosis

People with chronic illnesses are constantly being questioned by those in the medical field and also by people close to them. Frequently, we are questioned about our fatigue and pain—two things that can’t be seen and that change from day to day.

If you want to show a person with chronic illness that you care about them, take them at their word. If they say they are tired, they are tired. If they say they are in pain, they are in pain.

Ask about triggers  

Each person with chronic illness has different triggers. Personally, I’m triggered when people joke about my diet choices or comment about antibiotics being bad for me. The reason these are triggers for me is because I don’t want to be on a restricted diet or take antibiotics, but both make me feel better, so I do what I have to do.

For a person with chronic illness, each treatment decision comes with careful consideration and a great deal of anxiety. Once that treatment decision has been made, an outsider adding their two cents only causes more anxiety on behalf of the patient. If you are seriously concerned about a person’s treatment decision there is a way to discuss it without judgment.

Learn something about their illness

There is a wealth of information online about every illness. Take a few minutes and read up on what your loved one is going through from a reputable source. If your friend or family member posts a link with information, click on it and gain some new knowledge.

Recently, my dad alerted me to a new documentary on ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome). I didn’t know he knew that was one of my symptoms. It meant a lot that all those times I was talking about my fatigue, he was listening and wanted to learn more about it.

Attend an awareness event or donate to the cause

If a loved one asks you for a donation or to attend an event for a cause, do what you can to make it happen. We all know how difficult it is to ask for money or time from someone, and when it is related to a friend or loved one’s personal health challenge it can make them feel even more vulnerable. This, of course, is not always possible. There may be financial and time restrictions that are insurmountable. It is not an expectation, but know that it will mean a great deal to the person.

Don’t treat them like they are a different person

When someone is diagnosed with a chronic illness they may change their behavior, but remember they are still the same person. Try not to avoid them or treat them with kid gloves. We may feel different in many ways, so we count on those close to us help us remember who we are.

At the end of the day, one of the most effective things you can do is ask yourself, “If I were sick, what would I want someone else to do for me?” Your friend or family member won’t expect you to do everything on this list. They will be pleasantly surprised if you do one or two of these things.

 


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Chronic Illness is a Big Waste of Time

by Kerry Heckman
#MyLymeLife

Every Sunday evening I get out my pill organizer and about 20 bottles of medication and supplements. I set up a station at my table and start dividing pills into little compartments for morning, afternoon, evening and bedtime. The entire process takes about a half an hour and a lot of mental energy. It’s not a big deal, but it’s just one example of the time-consuming tasks that go along with having a chronic illness. Things that we have to do that other people don’t have to think about. Each week I spend time ordering and picking up medication refills, making and attending appointments, and preparing special food from scratch. When you’re ill, taking care of yourself becomes a full-time job and everything is done while fighting through brain fog, pain and chronic fatigue.

Mundane tasks aren’t the only reason chronic illness is a waste of time. A lot of time and attention goes into self-care. It’s important but it still takes essential time out of the day. Every morning I meditate, do a few yoga poses, and use a detoxification technique called dry brushing. Then, in the evening, I spend at least a half an hour in an Epsom salt bath and prepare an essential oil diffuser to run while I sleep. Some Lyme patients sit in an infrared sauna or use an ionic foot bath. It’s great for our health, but it all takes precious time.

A big chunk of our time also goes to researching symptoms and treatments. Because research on Lyme disease and other chronic illnesses is lacking we are forced to do a great deal of learning on our own. This is done by reading books, articles, blogs, and message boards, in addition to communicating with others with similar symptoms. This can often lead to a rabbit hole and eat up hours at a time, especially since a lot of information on the internet won’t be relevant to you. On the whole, however, it’s time well spent, but it can become exhausting.

To top it off, people with Lyme are often forced to sit (or lay in bed) and watch life pass us by. We see our friends on social media hiking in the mountains, playing outside with their kids, or crossing the marathon finish line and think, “That could’ve been me if I hadn’t gotten sick.” Many of us have half-finished college degrees or gaps in our resume from when we weren’t able to work. No matter when Lyme strikes there are always missed milestones and lost years.

Recently, I was talking to my husband about how for the past two years we hadn’t been spending much time outside or taking advantage of all the thousands of things to do in Chicago where we live. It was then I realized that for most of the last two years I was either at work or on the couch. Time passes quickly when there isn’t much diversion. I imagine many other people with chronic illness wonder where the years have gone. We’re all waiting for the day we get better and can go back to doing everything we used to do.

In spite of everything, I have a strong drive not to waste precious time. Perhaps it’s because, like many people with Lyme, I’ve been forced to face my own mortality. I often remind myself I only have one life, no matter what circumstances I’ve found myself in. When I feel disheartened about the wasted years, I try to reframe the way I look at time. Lyme is a season in my life. In some seasons we are meant to be active and productive, but in other seasons we are meant to rest and recuperate. I know this season will eventually pass or at least get better.  I think this quote by TK says it all:

Be easy. Take Your time. You are coming home to yourself.

Maybe it’s not about wasted time. Maybe instead it is all part of a process of slowly becoming who you are meant to be. Some people are transformed by radical shift, but maybe people with Lyme need a softer transition. Like the caterpillar becoming the butterfly, we are slowly preparing to take flight.


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

“And,” Not “But”: Taking Power Back With One Simple Word

by Jennifer Crystal

It’s all about perspective. Sometimes, changing the way you say something, can change the way you think about it. Writer Jennifer Crystal has some good advice for Lyme patients who need empowerment.

 
Recently a friend complained to me about a co-worker who also happened to be his brother. “He drives me crazy,” my friend said. “But he’s my brother, and I need his help with the business.”

“And,” I replied. “Not but.”

My friend looked at me quizzically.

“If you substitute ‘and’ for ‘but’, it changes the whole meaning of the sentence. It allows both clauses to be true, without being tied to each other. You need your brother’s help. AND he makes you crazy.”

I can’t take credit for this good advice; a therapist gave it to me years ago when I was wrapped up in conflicted feelings about my tick-borne illnesses. I was living with family, largely dependent on them and others, and I was wrestling with a lot of guilt. If I said something like, “My neighbor doesn’t get Lyme at all,” I felt I had to quickly add, “But he did run an errand for me, so I should be grateful.”

Though I was sidelined with a debilitating illness, I didn’t feel like I had the right to complain, because I was getting help and treatment. I added caveats because I felt bad saying anything negative when there was anything positive involved. I didn’t want to seem ungrateful, so I qualified that concern with “but”.

My therapist helped me to see that I was allowed to have both negative and positive feelings about a situation or a person. I could be sad, mad, and frustrated that I was sick. I could also be grateful that I was starting to make some strides in my recovery. By connecting those statements with “and” instead of “but,” I gave equal power to them both, instead of negating one with the other. Of course, sometimes we do need to use the word “but”; it is innocuous in a statement such as, “I tried to go to a movie, but it was sold out.” However, when talking about feelings for a person or situation, “but” implies guilt or shame for having those feelings, while “and” validates them. That can be empowering for a patient who is feeling not so powerful.

This trick can work for any adversity or strife, not just chronic illness. One might say, “That co-worker is so rude to me, but she’s helpful on this particular project, so I feel like I have to put up with it,” or, “My boyfriend can be so controlling, but he does pay most of the bills.” Statements like this show how powerless a person can feel, whether they are struggling with illness, a difficult work situation, or a bad relationship. Shifting “but” to “and” is a way to start taking power back.

If the co-worker is both rude and helpful, the person complaining can recognize the helpfulness as its own entity, which may free them to talk to their colleague about the rudeness as a separate issue. The person in the controlling relationship can appreciate her boyfriend’s financial support, and still have the right to talk to him about power struggles in the relationship.

“And” doesn’t solve problems, but it does help us to look at them clearly. It also allows us to have conflicted feelings without shame. For me, this shift in perspective took away a lot of the guilt surrounding my convalescence. I didn’t need to chide myself for feeling one way, and try to convince myself that I “should” be feeling something else. Instead, I could take ownership of all of my feelings. And that was a very liberating moment!


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 Pressure of Platitudes: Patients Are Only Human

by Jennifer Crystal

As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave…Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

One of my creative writing students, a cancer survivor, recently wrote about a time when she snapped at a fellow patient. This was while they were both receiving chemotherapy. A man sat down next to her and attempted to make small talk.

Just wanting to be alone, my weary student made a nasty comment, and he left.

You would think she wrote about this exchange years after it happened because she felt bad about whatever she had said. In fact, she wrote about the experience because it illustrates an important point that often can be missed: patients are only human.

Patients of any serious or chronic illness frequently hear, “You are so brave!” or “You’re such an inspiration!” These statements can be true, and can be nice to hear. As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave: when I got my PICC line in, when I was fighting doctors and insurance companies who didn’t believe me, when I underwent emergency gallbladder surgery. Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

But there were also times when I wasn’t brave, too. Those times when I didn’t advocate for myself, times when I didn’t stand up to someone, times when I wanted to give in to the illnesses. There were and are still times when I am not an inspiration after all: times when I’m grouchy, times when I overreact, times when I snap at someone thoughtlessly. Times when I, like my student, am all too human.

No one can be all one thing all the time. Part of being human is being multi-dimensional. Therefore, blanket statements like “You are so brave!” and “You’re such an inspiration!” don’t capture the full patient experience. Especially when given without context—like when you say it to a cancer patient you’ve just met and know nothing about him or her. In this context such compliments seem disingenuous.

In her book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, Laurie Edwards writes, “I fear it’s too easy to lump together platitudes about those who are sick—that we are somehow stronger or better people for having endured pain or extreme obstacles; that because we’re sick, we’re martyrs and capable of serenely accepting challenges, setbacks and procedures without complaint.”[1]

Sometimes we are strong and serene and capable of enduring more than we ever imagined. But usually we withstand obstacles simply because we have no choice.

“Very often, illness doesn’t allow the luxury of courage; pragmatism and practicality dictate the extent of our fearlessness,” writes Edwards. “I take the medications whose side effects I hate because that’s all there is left to do. There is very little room for interpretation, inspiration, or intrepidness in these situations.” As a patient who Edwards interviewed put it, chronic illness makes us better sufferers, not better people.1

Platitudes can also put unintentional pressure on patients to live up to super-human expectations. They may think they have to put on a good face even when they feel awful, or that they have to be brave even when they are scared. Patients wrestle with how they “should” feel or look, especially when they hear that other well-intentioned but off-putting statement, “But you don’t look sick!”

Beyond negating how sick someone is feeling, such a  comment also makes them think they shouldn’t try to look their best when out in public so that people can see how sick they truly are. I can’t imagine the mixed messages model Bella Hadid must contend with, since it’s her job to look beautiful but also to show that she is suffering from Lyme.

So what is a healthy person to say to someone with a chronic illness? My first piece of advice is “ask, don’t tell.” Instead of telling the person what they are, ask them how they feel, both physically and emotionally. Are they feeling brave? Scared? Cranky? Let them know that they don’t have to put on an act for you.

Second, be honest with what you feel and see. If a patient has done something that you recognize to be brave or inspirational, by all means, let them know, but be specific. Say something like, “I think you were brave to look for a different doctor” or “That quote you posted about chronic illness really inspired me to better appreciate my good health.” This way, the patient knows your compliment is genuine. You’ll feel better giving it, and they’ll feel better receiving it.

Finally, remember that the best way to help someone is by empathy. Let your friend or family member know that instead of telling them what to do, how to feel, or what they are, you are simply there to listen and to be with them. Chronic illness strips patients of so much, but it brings to the forefront their humanness. Let the patient know that you, too, are only human, and that both of you walk that journey together.

[1] Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. New York: Walker and Company, 2008 (41, 42)


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

Chronic Lyme Disease Series: Chelsea’s Story

Reprinted with the permission of itslyme.com
#MyLymeLife

My Lyme disease story starts two years ago.

At 27 I was fully devoted to my career and would blow off steam from a long day’s work at a kickboxing class 2-3 times a week. It felt good to release negative energy after a stressful day. But in April 2015, I started missing regular workouts because I just couldn’t shake the flu. I had a scratchy throat, mild fever, swollen lymph nodes, muscle aches as well as sudden bouts of vertigo. This would come and go for a few days at a time but I would never actually get sick.

As the months dragged on my health did not improve and my energy was dropping. I couldn’t stay late at work when my job demanded it and would limit social engagements. I felt like my body was telling me, “You’re not getting enough XYZ!!”. If only I could figure out what XYZ was – surely I’d feel better. My new family doctor, a female, thought I was being dramatic and ordered some routine blood tests and a physical exam to quell my fears. It turned out I was deficient in Vitamin D, a common ailment in our cold Canadian climate. I started taking a supplement and carried protein bars since I was also borderline hypoglycemic. Years later I would find out that reactive hypoglycemia is common in Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) patients (Horowitz, 2017).

My bloodwork had come back with a positive Mono-spot test.

Despite my Vitamin D levels increasing and eating smaller, more frequent meals I still didn’t feel like myself, so I kept at it. After a few more rounds of blood work and months later, my family doctor called to say she had some results. My blood work had come back with a positive Mono-spot test. Little did I know, my positive Mono test and host of seemingly unrelated symptoms was a hint at something larger and much more dangerous. Many of us carry viral infections without knowing it and being infected with Lyme disease (and other co-infections) can cause a reactivation. Epstein-Barr is one of the most commonly reactivated viruses. (Horowitz, 2017)

I took about a month off work to recover from Mono. This would help subdue my dizziness but my health would continue to decline over the next nine months. When my symptoms were at their worst, my exhaustion would result in difficulty walking or standing for more than a few minutes. This would later be diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of autonomic nervous system dysfunction. It explained my uncontrolled blood pressure, dizziness especially after standing, brain fog and some of my digestive issues.

My family doctor was tired of listening to my complaints and ran out of specialists to send me to (six in total). Blood tests, MRIs on both my brain and stomach, neurological exams, echocardiograms, Holter monitors and plenty of EKGs – all came back fine. I also investigated other options including the Mayo Clinic, which turned me down. Best Doctors, a second-opinion medical service available through my insurance, diagnosed me with Somatization disorder (it’s all in your head disorder). The only hints in my bloodwork were a consistently raised ANA (anti-nuclear antibodies), elevated liver enzymes and deficiencies in B12, Zinc and Vitamin D, suggesting my body was over-worked and fighting an unknown intruder.

It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me

In the fall of 2016, I decided to see a Naturopath and she wanted us to take Lyme Disease seriously, despite the fact I had tested negative multiple times through the provincial testing protocol in Canada (which is famously unreliable). I sent my blood away to California (IGeneX labs). My result was positive for Lyme Disease and Ehrlichiosis (caused by various types of Ehrlichia formerly called HME, human monocytic ehrlichiosis; the severity of the disease can range from mild to life-threatening. It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me, but it made so much sense when I began to educate myself. My body had been under attack and was crumbling under the pressure. Due to the prolonged emotional and physical stress of those two years, my adrenal system was extremely fatigued, further worsening my sleep, hypoglycemia, and energy. After starting treatment with a Lyme-literate doctor I was also clinically diagnosed with Babesia and Mast-Cell Activation Disorder.

If it wasn’t for my Naturopath I don’t know where I’d be today. I hope that by telling my story someone else will be saved the pain I was caused by Doctors and Specialists who brushed me off and misinformed me about Lyme Disease. Always listen to your body and trust your instincts. Keep searching until you find the answers you deserve.

Chelsea’s Symptom Breakdown:

First onset symptoms: Dizziness, vertigo, lightheadedness, fatigue, feeling ‘rundown’, sore throats, migraine aura, swollen lymph-nodes, hypoglycemia

Recall tick bite/bullseye rash? No; possible rash

Chronic Lyme disease symptoms: Extreme fatigue, insomnia, POTS, low-grade fever, poor circulation, brain fog, stumbled walk, muscle aches, sore throats, inflamed gums, migraine aura, heart palpitations, heart block, heart murmur, low BP/high BP, difficulty breathing/shortness of breath, stiff joints, heightened anxiety, phantom sounds (between sleep and awake), difficulty remembering common words

Diagnosis before Lyme  disease: Mononucleosis, B12 deficiency, Somatization disorder, anxiety

Lyme Disease and co-infections diagnosed by:  Blood test through multiple labs in the USA (IGeneX and MDL) as well as clinically with a Naturopath, also receiving treatment for adrenal fatigue, mast cell infection, and Babesia.


Chelsea is the creator of itslyme.com. Chelsea’s treatment is ongoing and she looks forward to returning to work in the coming months. She is hopeful for a 90-100% recovery and thankful to the Lyme community for the support she’s received.

 

References

Horowitz, R. I. (2017). How Can I Get Better? New York: St. Martin’s Press.

Post Traumatic Growth: Reframing the Trauma of Chronic Illness

by Jennifer Crystal

Jennifer Crystal discusses how you can grow from chronic illness trauma and how it can change your life for the better.

 

After reading one of the most intense chapters of my upcoming memoir—about the downward spiral that led to my April 2007 relapse—a fellow writer said to me, “I see a lot of post traumatic growth emerging here.”

I looked at her quizzically. Post traumatic growth? Didn’t she mean post traumatic stress? That period was one of the most traumatic of my life, and even ten years out, I still get some traditional PTSD symptoms every April: flashbacks, nightmares, anxiety, increased concern that the relapse could happen again. Surely, reading about the initial trauma itself, this writer was talking about the post-traumatic stress that would emerge in the years following the relapse.

But I had heard her correctly. She meant post traumatic growth as she saw it reflected in my writing, especially the parts where I used an older, wiser voice to look back on the difficult event and draw lessons from it. My friend, an Air Force veteran who writes about her deployment to Afghanistan, is familiar with both trauma and reflection.

She’s also familiar with post traumatic growth, a concept that is being used to help veterans not just bounce back after experiencing trauma, but grow from it and change their lives for the better. Developed in 1996 by psychologists Richard Tedeschi and Lawrence Calhoun, the theory holds that “people who endure psychological struggle following adversity can often see positive growth afterward.” As Tedeschi explained in an interview for the American Psychological Association, “people develop new understandings of themselves, the world they live in, how to relate to other people, the kind of future they might have and a better understanding of how to live life.”[1]

These were exactly the kind of changes I  experienced after surviving my relapse. Until that point, I’d always talked about “getting back to life” after Lyme disease. It wasn’t until I went back to ground zero that I realized it wasn’t about going back; it was about moving forward in spite of Lyme. Tick-borne illnesses were coming with me, and I had to figure out a way to neutralize them as best I could their impact on my future.

I’ve always considered myself a resilient person, but post traumatic growth is about more than just resilience. As explained in a March 2016 article in The New Yorker article titled  “Can Trauma Help You Grow?”, “Psychologists have long studied resilience—the ability to bounce back and move on. But post traumatic growth, which has been documented in hundreds of studies, is different; it’s (more about) what happens when trauma changes and deepens life’s meaning.”[2]

Of course, this growth takes time. For me, it took many conversations with my doctor, my therapist, my family and my friends. It’s taken 10 years for me to fully recognize and appreciate the ways Lyme has changed me for the better, such that I can reflect upon those changes in writing.

To chart post traumatic growth, Tedeschi and Calhoun look for positive responses in five areas: appreciation of life; relationships with others; new possibilities in life; personal strength; and spiritual change. I can now attest to positive changes in all of those areas, but I certainly could not have done so in the past when I was stuck in bed, unable to think about anything beyond migraines and joint pains, suffering hallucinogenic dreams only to wake into a living nightmare.

But the beauty of post-traumatic growth is, it’s not supposed to happen right away. In fact, it can’t happen unless you first come to some understanding of your trauma. And here’s the best part: Tedeschi asserts that post traumatic growth is far more common than post traumatic stress disorder.[3]

That’s an assertion I can also attest to. While I’ll likely always have some distress in April, and while I still get nervous about a relapse when my symptoms flare up, those periods are mere drops in the bucket of growth that I’ve amassed in the last decade. Lyme disease has changed me for the better, and I wouldn’t change that for anything.How’s that for irony?

Next week Jennifer will be answering your questions about Lyme disease. Have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com

 

[1] http://www.apa.org/monitor/2016/11/growth-trauma.aspx

[2] http://www.newyorker.com/tech/elements/can-trauma-help-you-grow

[3] http://www.nytimes.com/2012/03/25/magazine/post-traumatic-stresss-surprisingly-positive-flip-side.html?_r=1


 

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

Should I Tell My Employer I Have Lyme Disease?

by Jennifer Crystal

The chronic illness conundrum. When personal issues enter the workplace.

 

One of the many factors that led to my 2007 relapse was a huge research project I was doing for the magazine I was working for at the time. The incredible amount of energy and brain power that I put into the project caused my neurological symptoms to flare, until I was physically and mentally overwhelmed. My doctor suggested I take a week or two off work while I restarted antibiotics.

“But my editor doesn’t know I have Lyme,” I replied sheepishly.

“Why not?” he asked.

“I didn’t want her to think I’m not capable of doing my job.”

My decision to be secretive was born of fear: I was afraid of being judged, afraid of being defined by my illness, afraid of being seen as unreliable, afraid of losing the job I needed to help pay my medical bills. The irony was that by not telling my boss the truth about my health—and my limitations—I had worked myself into a situation in which  I was incapable of doing my job.

Angst over when or if to tell an employer about one’s illness is a common and scary struggle for patients of any chronic malady. It’s especially tricky with a relapsing disease like Lyme, which can flare, and impact work ability, without warning.

I was lucky because I worked from home. I set my own hours, so as long as I met my deadlines, it didn’t matter what time of day I did my work. I could write and edit articles from my couch, in my pajamas, and my boss was none the wiser. I napped in the afternoon and no one knew.

Not everyone has the same flexibility. Some Lyme patients find themselves struggling to look alive from nine to five, wishing they could curl up under their desks. They come home exhausted, unable to do anything but sleep.

The flexibility of my job, however, had its downsides.  I was paid by the hour. It was easy to forego social plans in favor of doing another couple hours of research. I lost my sense of work-life balance. How could I give myself downtime if I could be doing work and making money? The more hours I put in, the more money I made; the more money I made, the smaller the medical bills became, but the larger the medical issues grew.

After restarting antibiotics, I had such a bad Herxheimer reaction that I became bedridden and incapacitated. I couldn’t perform the daily tasks of living, let alone the duties of my job. I had no choice but to tell my boss the truth.

As I hesitantly explained my situation to her over the phone, she stopped me and said, “Oh, I knew you had Lyme…I read that article you wrote about it.” After attending my college roommate’s wedding in Florida in 2006—just as I went into remission—I’d written a piece about that experience for our college alumni magazine. I’d forgotten that my editor had gone to the same college, and received the publication. “I remembered that piece and have been so amazed with how much work you’ve been able to do in spite of all you’ve been through,” she said.

She offered to have me slow down for a few weeks, and when even that was too much, she hired a temp to cover me for a month. She didn’t sound annoyed, or frustrated, or put out, or any of the negative reactions which I’d imagined. Instead she said, “You are a critical part of this operation. I want to work with you through this. Just tell me how I can best help you and respect your needs.”

Had I been upfront with my boss in the first place, I would have saved myself the stress and anguish that contributed to my relapse.

It goes without saying that not everyone has such an understanding boss. Not everyone is able to take time off without jeopardizing their career, and not everyone can remain financially afloat if they do take a leave of absence. Many Lyme patients are the chief breadwinners for their families. In addition to their paychecks, they desperately need the health insurance their job provides, even though the work itself can lead to a relapse of the illness that requires insurance coverage in the first place.

It’s quite a conundrum, with no set answer.

One thing that is true across the board, though, is that Lyme sufferers and other patients of chronic illness are not in these difficult positions by choice. When I expressed to my doctor my concerns about telling my boss about Lyme, he said, “Having Lyme isn’t anything to be ashamed of. It’s not like a secret addiction or something you did to yourself. You were bitten by a tick—it could have happened to anyone. I think, if anything, your boss should be impressed that you’ve been able to do so much while managing this illness.”

He was right! Lyme disease wasn’t my fault. It wasn’t anything to feel guilty or embarrassed about. A good boss will understand that.

Ultimately I had to quit my job at the magazine. Unable to care for myself or pay my bills, I moved back in with my parents at 28- years of age. I was very lucky to have their help, but the move was a blow to my independence and my pride.

I kept my doctor’s words in mind, though, as I wrestled myself back into remission. Once I was well enough to work again, I understood the process, slowly, first volunteering, then taking on small freelance projects. I also reevaluated my interests and capabilities. I knew I couldn’t work in a pressured editorial position again, and I knew I couldn’t keep a traditional schedule. So what could I do? What was I passionate about? What was a career that offered a more flexible schedule?

My readers know the answer: I channeled my medical experiences into writing and teaching, et voilà, here I am penning this post. Do I still have fears that I’ll relapse and not be able to keep my commitments? Of course. But I’m upfront with my colleagues. And, most importantly, I’m upfront with myself about my limitations, and that honesty has made me capable of more than I ever could have imagined.


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

Chronic Lyme Disease Series: Kelly’s Story

By Kelly Gibson

Reprinted with the permission of itslyme.com
#MyLymeLife

With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure from my agents to look a certain way. I quickly began having symptoms again…

As an active kid growing up in New England, I was often playing outdoors behind our house, in parks, and on the soccer field. One morning in 2003, at age 10,  I woke up at my aunt’s home in New Hampshire with a sore spot on the back of my head. I couldn’t remember bumping it, and it didn’t hurt enough to mention that day. Two days later, my head was still sore. My aunt took a look, and noticed there was a tick embedded just above my hairline. The tick was extracted with a pair of tweezers, and nothing else was done.

For the most part from age 10-14, I was a normal, healthy kid. I hardly caught colds, and besides a broken arm or visiting my RN mother at work, I was rarely in hospitals. At age 14, I attended my first “Snow Ball”, our version of prom. About 40 minutes in, I had a nosebleed, blacked out, and then subsequently began vomiting. I was then taken home by a family friend, as it appeared as though I had been drinking – I had not. Having no other symptoms in the days following, no other treatment was sought.

At age 15, in addition to dance classes three nights a week, I decided to join the track team. During three out of my first five practices, I blacked out and vomited.  I was taken to a family doctor, who diagnosed me with a “sodium deficiency” as all my blood tests came back normal, but my sodium levels were slightly on the low side. The treatment? Eat more pepperoni and ramen noodles before track.

At age 17, I had started my senior year and had taken on a lot as Peer Leaders President, Student Council Vice President, Key Club Member, a High Honors student with two AP classes, and attending dance classes four nights a week after school. In November, I had suddenly felt weak after school one day. I called my dance studio to let them know I would not be coming, and instead went home and got into bed. I did not get out of bed for one week due to exhaustion, sore throat, weakness, dizziness, and headaches. When I decided to return to school the following week, I ended up blacking out and vomiting again. I was taken to the hospital to have tests done and an IV of fluids. All of my blood tests came back normal, with the exception of a mildly positive Epstein Barr Virus test. So when the speculation came down to anorexia, depression, attention seeking or EBV… EBV it was.

I had even more symptoms added into the mix… inability to stand for more than a few minutes without fainting…being the most compromising living in New York.

I was allowed to do the majority of the remainder of my senior year working from home and by graduation I had been feeling much better and therefore decided to continue with my plans to move to NYC for college the following autumn. As fun and exciting as NYC was, my health quickly declined- nausea, vomiting, dizziness, and headaches returned along with one new symptom: joint pain.  When I was home for winter break, I was taken to doctors again for another round of testing.  This time, the word “Lyme” had been mentioned. Sure enough, my Lyme disease test came back positive and I was immediately put on two months of Doxycycline. I began to feel much better, and more like my normal self. So much so, that I took it to the extreme and decided it would be wise to enter myself into the New York party scene. I did this for six months, and have never fully recovered.

By the time I saw Chronic Lyme Disease Researcher + Specialist, Dr. Kenneth B. Liegner in 2012, I had even more symptoms added into the mix: tremors, brain fog, muscle twitching, depression, and the inability to stand for more than a few minutes without fainting. The latter being the most compromising living in New York.  After an additional positive Lyme test, as well as positive tests for Babesiosis and arthritis, Dr. Liegner started me on continuous oral antibiotics (I haven’t stopped taking them since), and a few months later an 8-week stint of IV Rocephin. Both treatments had me feeling back to (almost) normal. I then chose another industry which was detrimental to my health: modeling.

With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure to look a certain way. I quickly began having symptoms again but was determined and thus continued to work. After two years, I was back needing to receive IV’s again & began seeing a new Lyme specialist closer to my parent’s home. Dr. Richard J. Dubocq did everything in his power to allow me to continue my modeling dreams. He understood I was going to do it anyway, so he might as well help me to accomplish it! He began to not only treat me with oral antibiotics but also with other medications to help with the symptoms I was experiencing. I began to feel better again, but with the physicality of working both in NY and Europe, I need another boost of IV antibiotics and another six-month rest before returning to modeling again.

I lasted 8 more months. During the February fashion week of 2015, my neuropathic symptoms got so bad that by the end of six days of shows, I had trouble walking, difficulty finding words, insomnia, minimal short term memory, and had a droop on one side of my face. This led me to once again, return home for rest and treatment. I finally decided enough was enough, and quit modeling for good. Six months later, I felt well enough on my oral antibiotics to begin working again. I took a part time job as a front desk associate at a spa near my apartment. As I began to improve and take on more, I had the ability to move up throught the company. Two years later I am the spa director for the location working 45-50 hours a week, and feel well enough to take a couple dance and fitness classes per month.

I still have symptoms, but am able to manage them and live a pretty full life, even though it is not the life I intended to have. After having Chronic Lyme Disease for fourteen years, and only being treated with antibiotics for the last seven, I will most likely never be “normal” again, but I am proud of myself and so thankful to my family, friends, and doctors for getting me this far.

Kelly’s Symptom Breakdown:

First onset Lyme symptoms: Dizziness, fatigue, severe headaches, sore throat, vomiting, blackouts.

Recall tick bite/bullseye rash: yes; not that I know of.

Diagnosis before Lyme disease: Sodium Deficiency, Epstein Barr Virus

Chronic Lyme disease symptoms: Headaches, extreme fatigue, facial paralysis, tingling sensations, stuff neck, swollen glands, sore throat, twitching of muscles, eye floaters, extreme menstrual symptoms, buzzing in ears, nausea, vomiting, night sweats, costochondritis, shortness of breath, mood swings, depression, anxiety, numbness in body, stabbing sensations in legs, weakness, tremors, difficulty walking, difficult finding words and forming sentences, forgetfulness, memory loss, and rashes.

Lyme disease & co-infections diagnosed by: Persistent symptoms, Western Blot blood test.

Kelly is still being treated with oral antibiotics for Chronic Lyme, Babesiosis, and Bartonella, but hopes to soon be able to decrease antibiotics and supplement with herbal and homeopathic remedies.

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

lyme disease

The Roller Coaster of Lyme Disease

by Kerry Heckman
#MyLymeLife

Living with Lyme disease comes with constant ups and downs

 

The MRI results were sitting in my email inbox a week before my doctor’s appointment. I couldn’t bring myself to look at them. Too much was riding on it. As a complication of Lyme disease, I have an infection in my spine, which no antibiotics seem to touch. It’s  been almost three years since it was discovered and no doctors can find a solution. Six months earlier, though, I started a new antibiotic and my doctor thought this was “the one.” I didn’t want to learn it was just another failure.

As soon as my doctor came into the room I knew my MRI results weren’t good. He had a serious look on his face, in sharp contrast to his usual jolly demeanor. I listened while he told me there was no change in the results and that maybe it was time to consider a more aggressive treatment. Getting this news was like being at the top of the highest peak on a roller coaster and then plummeting suddenly to its lowest point. I felt the same queasiness in the pit of my stomach, but it wasn’t a thrill. All the hope I’d built up, only left me disappointed.

I officially got on what I refer to as the roller coaster of Lyme in January of 2016, but like most Lyme patients I’d been on a health roller coaster most of my life. The ups and downs have been unrelenting. There are the short-term ups and downs of daily life, like when you have a good day immediately followed by one where you can’t get out of bed. And there are the long-term ups and downs of treatment. I start to make progress and then have a huge setback, like the one I had last month when I got the results of my MRI.

As Lyme patients, we try to make sense of the ride. We wonder if a peak or valley is due to a new medication, changes in seasons, or our hormone cycles. All these things do have an impact, but then there are times where there is no reason at all. Those are some of the lowest lows, because we don’t know what to do, lost with no answers and no momentum to get back up the hill.

With chronic illness, the jarring ups and downs take an emotional toll. We stop trusting our progress and are always waiting for the other shoe to drop, because, unfortunately sometimes it does. Imagine feeling the best you’ve felt in months, only to have a new symptom crop up out of nowhere. You stop trusting your good days, which can turn so quickly into bad days. There isn’t a day when you just feel at peace. This is why the question, “How are you feeling?”, has been such a hard question for Lyme patients to answer. I always feel like I’m lying, because people usually only see me on my good days, when I’m more likely to say I’m feeling well. On my bad days, I don’t leave the house.

To date, the roller coaster’s the best metaphor I’ve found to describe what it’s like to live with Lyme. It’s not an illness where you have steady forward progress, instead you go up and down, hopefully trending upward in the long run.

Despite being knocked down time after time, I choose to live in a state of hope, rather than despair. Why do I continue to hope even though it’s been three years with no change on my MRI? Because I have a choice. It’s the one thing I have control over in this illness. I can choose despair, or I can choose to keep up the fight. I think hope is the better option. Some people say if you build your hopes up, you risk more disappointment. I don’t think that’s true. I’m going to be disappointed either way on this roller coaster, and I’d rather live my daily life in a state of hope and positivity rather than being guarded and cautious. For me, hope is the better option.

Yesterday was a bad day, today was a good day. Who knows what will happen tomorrow, but one day the roller coaster will come to an end. My goal is remission, and when I finally reach it all the ups and downs will have been worth the ride.

Read Kerry’s last blog, “When I Miss My Life Before Lyme“.


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

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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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

When We Build Cathedrals

by Susan Pogorzelski
#MyLymeLife

Finding the strength to build when your chronic illness leaves you feeling exhausted and invisible.

 

I recently read a powerful story by author and speaker Nicole Johnson about a gift she received at a dinner party. It was a book about cathedrals whose message she didn’t understand until she read the inscription from her friend. The inscription read, “With admiration for the greatness of what you are building when no one sees” and came at a time when Nicole herself was struggling with feelings of inadequacy and invisibility as a mother.

When she read the book, she found it life-affirming. The world doesn’t know who built these cathedrals of prestige and beauty, she explained, but the builders were fueled by faith, passion, and purpose in their work. Nicole continued to reiterate a story in the book of a wealthy man who approached one of the builders while he worked. She writes:

“He saw the workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, ‘Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.’ And the workman replied, ‘Because God sees.’”

I’m not a mother, but these were the words I’ve been needing to hear for so long now. Because while I may not know what it’s like to feel invisible with regard to parenthood, I know what it’s  like in the face of chronic illness. I’ve lived with the hope that someone might see me, hear me, for the past five years—even longer, as this has been a common refrain for most of my life.

Doctors wouldn’t hear me when I told them there was something gravely wrong with my health, when I begged them to help me save my life. So I saved my own by finding a doctor who would. Colleagues refused to see my pain, instead spreading rumors and calling my character and work ethic into question when I couldn’t walk, could barely talk, couldn’t find the energy to lift my head from the pillow for more than minutes at a time. So I confronted them with dignity, pushed myself past my limitations, and fought my way into remission…and a promotion. Family and friends tried but couldn’t understand the lifelong effects of this disease. So I held awareness events in my local community, wrote blog posts and a second novel about Lyme disease to encourage compassion, and reached out to other patients knowing they might be feeling just as alone, to assure them that we were on this journey together.

With each challenge, I’ve pushed forward to save myself, to create something lasting for myself,  to leave a story of hope behind for others. Where this illness has consistently tried to break me down, I keep moving forward to build my life back up because I don’t know how to stop, even through this recent relapse, and the fire inside won’t let me.

But I’m tired now.

I’m tired of fighting against this dark cloud that seems to hang overhead, cutting the signal, preventing me from reaching those I want to reach and helping those I want to help. I’m tired of the days when my energy is sapped, when I lie in bed unable to move, wishing I could be working or writing or being useful in some way. I’m tired of the glimpses—small pockets of life purpose that give me just enough willpower to carry on into tomorrow, but maybe not the next day.

I’m doing so much, but it never feels like enough, and I’m just so tired.

I’m staring at my own life—this cathedral I’ve built from the ashes of this disease—and I can’t see past the beams. What will this life look like in the end? What positive change will have come from my own suffering? What purpose still remains? If I’m invisible to everyone already—feeling like I’m barely reaching anyone—then what hope is there for what I’m building now?

Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.

Because it’s there. I know it’s there, this work I’ve created full of hope and heart, and maybe that’s what matters.

I don’t know if what I’m building will be seen. I don’t know if the words I’m sharing will be heard. But they’re here for those who need it. And I’ll keep sharing. I’ll keep building. I promise I won’t ever stop.

Word by word, carved bird by carved bird, I’ll work beside others and build and build and build until the legacy lies within the cathedral itself—hope and faith and change for those to follow, so that those who suffer will be seen and heard, and not just by those who choose to look.

There’s a purpose for us yet.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

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

Why You Should Never Make Fun of a Restricted Diet

by Kerry Heckman
#MyLymeLife

For some patients with chronic illness, including Lyme disease, a restricted diet can improve their lives. So why the ridicule?

 

The jokes are everywhere. There is a popular meme that reads, “It’s gluten-free, sugar-free, dairy-free, soy-free, egg-free, & fat-free. They call it ‘water’ and you can buy it at Whole Foods.” Implying that the only thing someone on a restricted diet can have is water and only shop at grocery stores with a reputation of being pretentious. (Not that anyone on a gluten-free, sugar-free, dairy-free, soy-free and egg-free diet would ever eat anything that was fat-free, but that’s beyond the point).

I’m on a restricted diet and I’m often embarrassed to talk about it. Why am I embarrassed? Because there is a general consensus that special diets are a fad and only obnoxious people eat that way.

Why do I eat the way I do? By the time I was 34, I had already been diagnosed with two autoimmune disorders, later to be correctly diagnosed as chronic Lyme disease. I was in so much pain I couldn’t turn over in my bed without screaming. The doctors found so much inflammation in my spine and muscles in my back I was hospitalized for five days and underwent two biopsies. Conventional doctors offered no viable solutions.

An integrative medicine doctor encouraged me to try something called the autoimmune protocol diet, which is an extremely restrictive, low inflammation diet with no grains, no dairy, no sugar, etc. After only two weeks on the diet my back pain subsided and I was finally able to sleep. Eventually, the diet became too restrictive for me, so I modified it to meet my needs. Basically, I avoid processed foods, gluten, dairy and sugar. I had to give up a lot of the foods I love, but it changed my pain level from a steady eight to an intermittent two. When it came down to living in constant pain or giving up gluten, I had to choose the latter.

Nevertheless, I still get rolled eyes and laughter when I discuss my diet, even from people who know I’m sick. To be honest, before I got sick I probably would’ve reacted the same way. What people may not understand is that we don’t want to eat this way, we have to eat this way. We love gluten. Gluten makes doughnuts doughy, bread spongy, and pasta unsticky. It was next to impossible to give it up, and I still miss it every time I pass a bakery or pizza place.

The harsh reality is there has been an upsurge in people diagnosed with autoimmune and chronic diseases. You probably know someone with one of these diseases. Do you remember knowing so many people with such diseases the 1980’s or even the 1990’s? Probably not. I know I didn’t. Autoimmune disorders and chronic immune system dysfunction numbers are skyrocketing.

Integrative and functional medicine practitioners believe these illnesses are caused in part by the standard American diet. If people better understood the link between of certain foods and inflammation, they would realize it’s no laughing matter. We need a wake up call that our immune systems cannot handle all these inflammatory foods. For some patients with chronic illness changing their diet can save their lives. For a good example, read about Dr. Terry Wahl’s battle with MS and how she got her life back when she changed her diet.

Consider approaching the issue from a place of compassion. What if you had to give up your favorite foods? What if one piece of birthday cake made you ache for days? What if you had to stop going to all your favorite restaurants? What if you couldn’t have a glass of wine on a Friday night?

I understand restrictive diets are challenging to accommodate in social situations. It’s why many people on these diets stop going out entirely, leading them to social isolation and even depression. They are forced to choose between friendships and unrelenting symptoms.

In these situations the host can offer to dine at their own house or choose an activity that doesn’t involve food. As the demand for healthy options keeps growing, I am constantly finding new restaurants that fit my dietary restrictions, so maybe ask your guest where they are able to dine.

There are a few areas of concern one should be conscious of when discussing dietary restrictions. One is that it is very expensive and time consuming to eat a low-inflammation diet; therefore, people with limited resources might struggle to maintain it. A second concern is that some people don’t have dramatic results from the diet, which can be disheartening. And finally, some people take restricted diets to the extreme so it can itself become an eating disorder.

Everyone deserves to eat what they want without being put down. We have to stop mocking people who try alternative ways feel better. There are people who don’t have chronic illness who follow a special diet and the reasons are still valid—such as losing weight, gaining energy, and feeling better about themselves. Someday not so far in the future, no one will be on a restricted diet, because everyone will be.

I love lighthearted fun and joking around, but it’s time to take this one off the table.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

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

Dreaming of Better Days

by Susan Pogorzelski
#MyLymeLife

Do you dream of the day when rest is a choice, not a need? And when your friends and family truly understand the toll that Lyme disease takes on your body and your mind?

 

It’s eleven in the morning as I write this, a full ten minutes since I’ve woken up from my first nap. My life is routine these days, thanks to Lyme disease. Wake at seven, let the dogs out, force myself to eat breakfast so I can swallow a handful of antibiotics, then back to bed because the fatigue lies heavy, like a blanket on both my mind and body. Only then, when I awake a few hours later, am I finally able to function.

Then there’s lunch, supplements, household chores or working on the new novel or, if I’m having a really good day, a much-needed trip to the grocery store. These activities are always followed by an afternoon nap. If I’m feeling well, it’ll last two hours at most. If I’ve pushed myself beyond my known limitations, I’ll sleep well past dinnertime, waking up only when my dogs nuzzle me with their reminder to feed them, waking up only because they need me.

My friends used to joke about my napping, and because I had a pretty good sense of humor back then, I laughed along with them. I wasn’t blind to how ridiculous it seemed. I was young, seemingly healthy, with passion and ambition guiding me forward in life. So why was I sleeping my life away?

Every day after school, I’d fall asleep on the couch until my parents woke me up for dinner and homework. I remember becoming irrationally angry with them, wondering why they couldn’t let me sleep until I was ready to wake up. I didn’t understand it then, but I recognize it now: my body was refueling itself, and waking up before my energy was fully restored meant that I wouldn’t have enough to get through the night and into tomorrow.

When I was in college, with a diagnosis of Chronic Fatigue Syndrome, I wisely scheduled my classes as far apart as possible so I’d have enough time to rest in between. I didn’t know I had Lyme then, and I didn’t understand the implications Chronic Fatigue Syndrome could have on a life. I only knew that sleep restored me while life seemed to drain me.

“Were you taking a nap again?” my friends would ask, their voices filled with amusement.

I’d shrug my shoulders and laugh along with them. “You need coffee, I need sleep,” would be my reply.

blog_mylymelife_suep_dream_quote

While everyone else spent their evenings readying themselves for a night on the town, I made sure I had enough time to rest before getting dressed. When I entered the working world, early bedtimes became a staple, and I turned down more than one fun day out on the weekend because I knew I needed to conserve my energy for the week to come.

When I was finally diagnosed with Lyme disease, the reason for this inherent need for sleep finally became clear to my family and friends, though there are still days when they struggle to understand why I can’t accept their invitation for a spontaneous night out. Even now, they’ll send me cute memes and funny cartoons about napping, and I’ll laugh along with them because it is cute and it is funny, and I’m grateful to have my sense of humor back. But sometimes I wonder if they will ever really understand that this is a need, not a choice. I’d never choose sleep over friends.

I’d never choose this life with Lyme.

I wish more than anything I had the energy to be a part of the world like I want to be. I’d spend my time with friends and family and be the mom to my dogs that I want to be. I’d visit museums and attend concerts and travel to places near and far. I’d provide for myself, I’d be independent again.

I’ve been lucky in my life that I’ve been able to do so much despite this illness, but that’s what makes it that much more difficult: knowing what I was capable of before, knowing how limited I am now, knowing how much more of the world I still want to experience.

So I’ll finish writing this essay and make myself some lunch. Then I’ll play with the dogs or finish some chores until I notice my energy beginning to drain. I’ll wander to the couch and lie down and close my eyes.

And when I sleep, I’ll dream of the day when I can do so much more.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

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

What to Do When You Get Bad News About Your Health

by Kerry J. Heckman
#MyLymeLife

Getting bad news is hard for anyone. For people with a chronic illness, like Lyme disease, it can happen often. Here are 8 tips to help you manage the bad news.

 

I went through three biopsies of my spine trying to find a reason why my MRI was so drastically abnormal. All three biopsies were inconclusive. This process is not for the faint of heart. It consists of fasting for an entire day, getting an IV, laying on your stomach in a CT machine, while the doctor sticks a large needle in a precise location within my back. During my first two biopsies, they took a sample of my bone, which I could feel them chip away. The sedative and twilight anesthesia helped, but caused me to throw up about an hour after I finished the procedure.

Each time I prayed for an answer to my long-awaited question, and each time the lack of a diagnosis stung a little more.

For people with chronic illnesses the medical tests are non-stop. My one good vein has so much scar tissue it’s hard to get blood from it anymore. Sometimes those test results are positive and hopeful, but many times they aren’t. The bottom line is when you get news about your health that isn’t what you wanted to hear, it’s very hard to cope with; and for people with chronic illness, it happens over and over again.

Here is some advice on how to respond:

1. Cry

You better believe I’ve cried a lot after a phone call from a doctor or an email from a lab. It’s okay to be disappointed, sad, and scared when you get bad news. Let the river of tears flow. Life is not always kind.

2. Talk to someone

When the news is bad, it can be helpful to talk to someone. This person can be your partner, parent, best friend, or a professional. Pretending you aren’t hurting and putting on a brave face won’t serve you in the long run.

3. Don’t let the test results define you

Test results are numbers on a page or the label of a diagnosis, but often these things are changeable, not fixed. I know one day my inflammatory markers will go down and the Lyme disease will be in remission. When I get bad news, I know it’s a measure of my current state and it’s only temporary.

4. Get a second opinion

If I hadn’t gotten a second opinion, or a third, or a fourth, I never would have gotten a correct diagnosis of Lyme disease. It’s also important to remember there is a time to gather new information and a time to contemplate what you know; try to find a balance.

5. Write down an action plan

When another spot of inflammation showed up on my CT scan, I was devastated and overwhelmed by the number of follow up tests and conversations with doctors that needed to take place. I was worried if I didn’t get it all done instantly something would get missed. I paused a moment and took the time to make a list of everything that needed to get done. Then, I put each item in order of importance. It helped to take all the anxious noise in my brain and lay it out in a strategic plan.

6. One step at a time

After you have developed your action plan, take one step at a time. You might not get all the calls made in one day. There may be tests that you have to be schedule far in advance or may take weeks for the results to come back. As long as you are marching toward the goal, don’t push yourself too hard.

7. Ask for help

Let’s face it, brain fog doesn’t necessarily lend itself to creating and following through on a detailed health plan. Ask your doctor, partner, or friend to talk it through with you. Maybe they have insights that you didn’t consider.

8. Look for a reason

I don’t necessarily believe everything happens for a reason. But my personal philosophy is even if there isn’t a reason, it still happened, so you have to make one.

When I had my inconclusive biopsy, a good friend said: maybe now isn’t the right time to find an answer. She was right. If I’d received a negative biopsy I might have given up the fight for answers, but since I had no answer I sought out a new doctor who ultimately led me to my Lyme diagnosis.

Each test, whether good, bad, or inconclusive is another clue along the path to recovery.

My mom recently had an abnormal mammogram and had to go through a biopsy of her own. With our stomachs tied in knots, my entire family waited for the results. We breathed a collective sigh of relief when the biopsy came back negative. When you get bad news about your health it’s important to remember that sometimes there is good news. I’ve had my share of positive test results. They’re just overshadowed by the negatives ones. Illness is a journey of ups and downs, for every dark of night there is the light of day. Waiting for the sun to come up is hard, but it’s there hidden just behind the horizon, ready to rise.


Opinions expressed by contributors are their own.

kerry-j-heckman-profile-picture_thumbnailKerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

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.

 

A Naval Aviator’s Experience with Lyme Disease

by Luke D. Miller
#MyLymeLife

When I was 21, I earned my bachelor’s degree and accepted a commission as a Marine Officer in Quantico, Virginia.  Serving my country was my only dream. I spent many days and nights training in the Virginia wilderness. However, after returning from a week-long training exercise, I pulled an embedded tick off my abdomen. Unbeknownst to me, that seemingly harmless tick bite would eventually end my career. Immediately after the bite, I came down with a severe case of bronchitis and widespread joint pain. I went to the hospital and was prescribed antibiotics and anti-inflammatories. About a month past and I recovered, forgetting about the tick bite. As I progressed through my career, which took me to flight school, I began experiencing short-term memory problems, loss of concentration, and extreme exhaustion. I was working 12-18 hour days, so I blamed it on stress and the difficult curriculum. I medicated with coffee. I successfully graduated from flight school, with honors, and moved on to my next duty station: Whidbey Island, Washington.

While stationed at Whidbey Island my health deteriorated to the point where I was unsafe to fly, relied on my car’s GPS to find my way home, and faced a potential death sentence – a provisional diagnosis of ALS. Unwilling to accept that diagnosis, I sought out multiple opinions and one finally made sense, Lyme disease.

tick bite ended career

Within five years, at the age of 26, my health deteriorated to the point where I was disabled and unable to work. Subsequently, I was medically retired from the military and survived off of military, veterans, and Social Security benefits. Physically, mentally, and emotionally broken, I was lost. How did I become disabled? To the average person I appeared normal, but I was fighting an internal war with Lyme disease.

Now, at the age of 33, I am in my third year of law school. In five months I will graduate from Willamette University College of Law and set out in my new career as an attorney. I wouldn’t wish my life on anyone, but also one I would not change if I could. Through my struggles I was blessed to meet and marry my best friend. We have two beautiful children: our four-year-old son, Isaiah, and one-year-old daughter, Kalani. Raising our children isn’t easy for my wife, because much of the family responsibility falls on her because due to my physical limitations.

After eight years of continued aggressive treatment with a Lyme-literate doctor and weekly chiropractic care, I still struggle but my symptoms are manageable. I suffer from widespread pain and neuropathy, fatigue, concentration and short-term memory issues, but those symptoms are not always present. I have “good days” and those good days are increasing in frequency as symptoms grow milder. While I may not be the same person I was (and likely will never be), I am back in control of my life. I am happy and flourishing.

lyme disease could have broken me

Lyme disease could have broken me, but I refused to go down without a fight. Ironically, I became infected with Lyme disease because of my military service, but both my military service and Lyme disease have lead to unparalleled opportunities. Our family now operates a successful real estate business, which came about in part out of necessity, and I had the pleasure of working as a law clerk for the Oregon Department of Justice, Oregon Legislature, Veterans Legal Institute, two private law firms, and Willamette University College of Law’s Veterans Legal Clinic. My personal battle with Lyme disease reinforced my desire to fight for others. As I approach graduation, I cannot help but be grateful for where I am.

Don’t let Lyme disease silence or discourage you. Use it as a springboard to propel you to where you ultimately should be. Minus the cockpit, I am serving others as I always intended, but in a new way. Lyme disease seemingly ruined my life and career, but in the long run it did not; it challenged me and forced me to shift course. Rather than flying and dropping bombs, I take the fight to the “enemy” with words through court pleadings. I utilize our judicial system to help others and hopefully prevent them from facing a horrific reality as I did. However, if they do, I am here to help them navigate those formidable waters.

Lyme disease recovery is a harsh reality. You are sick, unable to think straight, and feel backed into a corner. There are few people to help you so you go it alone. However, if you can survive the first few years, you regain yourself. You realize, as you assist others, you can relate to those you help, because they occupy the same confused and scared position you stood in earlier. Know yourself, your limitations, and then you can begin to bear the burden of others.


Opinions expressed by contributors are their own.

luke-miller_blog-writerLuke D. Miller lives in Oregon with his wife and two children. He is about to embark on his new career as an attorney.

Trauma and Lyme Disease

by Susan Pogorzelski
#MyLymeLife

How could I compare my experiences with Lyme disease to those who had endured worse?

 

It’s taken me a long time to get to this point, to be able to admit that what I’ve been through in the face of this illness has been traumatic. The words “trauma” and “suffering” were always reserved for other people—people who faced unspeakable horrors, visibly fighting their demons with inconceivable bravery. How could I dare use those words when so many had been through so much more? How could I compare my experiences with this disease to those who had endured worse?

The truth is, Lyme disease is a traumatizing experience. From the initial diagnosis through recovery, it leaves its scars in a way few other illnesses do—invisible wounds from daily battles permeating our everyday life. I didn’t want to admit this. I wanted to get through recovery and move on. I thought I had, for a while.

When I went into remission after two and a half years of treatment, I was eager to move forward with my life, pursuing dreams with vigor and tackling challenges with ease now that I was presumably healthy. Slowly, those years of pain and fatigue, of isolation and loneliness, of questioning my own mortality and ability to survive passed into memory, becoming a part of my history. I had let it go; I had moved on, and I wasn’t looking back.

But then came the relapse, and with it returned all of the pain, uncertainty and old fear. Suddenly, I was facing again what I had fought so hard against, and I plunged back into depression, wondering if I would survive a second time. Back again was the familiar pain and the fatigue draining every ounce of energy from my body. Back again was the paranoia and anxiety. I couldn’t bear to leave my house. Back again was the knowledge that I had to keep fighting relentlessly for fear that I might succumb to this disease if I let up for just one second.

Hour after hour, day after day, year after year of fighting is enough to make anyone grow tired and weary, but the hardest part of Lyme disease is that it never relents. In the beginning, you’re fighting for a diagnosis among feelings of betrayal from the very doctors you entrusted to help save your life.  They question your symptoms, tell you it’s nothing more than a virus, pat you on the shoulder and tell you you’re just sensitive, and slowly you begin to wonder if maybe they’re right. Slowly, you begin to lose faith in the medical profession and, worse, in yourself.

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When you finally do get your diagnosis, it’s like an oasis in the desert, and you’re so grateful to put a name to the enemy that has stolen moments from your life that you wear it like a badge of honor. Suddenly you want to scream, “Here’s proof! Look at what I’ve been through! Do you understand now?” But you’re met with blank stares and nonchalant anecdotes about that time your colleague’s aunt had Lyme and it wasn’t that bad. They question your character, spread rumors that you’re not really that sick, and you fight for your reputation and livelihood, at the same time desperately trying to build awareness for a disease so few understand, so someone can finally understand you.

Then comes treatment and recovery, the biggest battle of all. Every single minute is a fight for your life, and you never feel safe because you’re always gearing up for another battle as you struggle against this invisible enemy inside you. This enemy which has slowly drained you, stealing moments and breaths until there’s hardly anything left and you feel like you’re only existing, not living.

That’s how the relapse broke me. I couldn’t relax because I never felt safe. I couldn’t have fun because I’d forgotten how. I couldn’t look too far ahead because I feared I would always be one step away from being that sick again. I felt shattered by these years of suffering, plagued by a fear that it wouldn’t end.

Lyme disease is traumatizing to the mind and spirit, especially when you suffer for so long. Day in and day out, we live with a disease that does its best to bring us down, and every second, we’re fighting to survive. Even when we get a break, even if we reach remission, the memory of this fight is still there in the back of our minds—a knowledge that any minute we might have to arm ourselves with renewed strength, renewed courage, and fight again.

In the year since my relapse, I’ve had to face this fear for what it is: trauma due to the many nuances of this illness. I’ve had to admit to myself that what I’ve been through—what every Lyme patient goes through—is a war of a different kind, leaving behind its own invisible scars.

Like any trauma, it takes time to heal. Like any struggle, it can transform us into something more positive, if we let it. Because the good thing about scars is they show us where the cracks in our armor are, and our experiences help us fill them up with something stronger, someone new.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.


 

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From Lyme to the NYC Marathon’s Finish Line

Running a marathon of 26.2 miles is a herculean effort even for most healthy people. But for those who suffer a chronic health issue, like Lyme disease, it requires determination and drive that most of us couldn’t even imagine.

 

On November 6, 2016, Toni Blanchard, of Greenwich, CT and Jesse Ruben, of New York, both members of Global Lyme Alliance’s Young Leaders Council, became the first Lyme patients to run the New York City Marathon for Lyme disease research. Wearing GLA T-shirts created especially for the race, Toni and Jesse ran to spread awareness about Lyme disease and the need to raise funds for further research. They set up a Crowdrise account and, together, raised over $15,000 for GLA.

Crossing the finish line was a dramatic achievement for both runners. Recently we caught up with them to talk about their success. We hope it will inspire those working their way back to health.

Can you tell us about your experience with Lyme disease?

JR: I started feeling ill at the end of 2012 and was diagnosed in September 2013. During the time when I didn’t know what was causing my symptoms, I was dizzy, nauseous, had brain fog, crawling sensations in my body. At one point I couldn’t even walk up a flight of stairs. I was a mess. After I was diagnosed, I went through nearly two years of treatment. My symptoms slowly lifted and I felt like I became a human being again.

TB:  I was diagnosed when I was six so I never knew what feeling “normal” meant. I had terrible body pains when I was young and my feet would hurt to walk. I experienced exhaustion and tremendous difficulty sleeping, but this was all normal for me, so growing up I never understood that I was compromised. Since I was young, running and exercise in general have been important elements in my recovery.

What made you decide to run in the marathon?

toni jesse lyme marathon ylcJR: The first thing I wanted to do after my recovery was run the New York City Marathon for Lyme research. At first I was told I couldn’t: no Lyme-related charities were registered. Luckily, I had gotten a spot in the marathon lottery. Once Toni and I discovered we both had spots in the race, we decided to set up the Crowdrise account so that people could donate to GLA on our behalf. It was an opportunity to be a voice for people who couldn’t run the race and to raise funds for the organization.

TB: I always wanted to run the marathon. Running has been a huge part of my health regimen. It allows me to detoxify my body and clear my head. The marathon was an opportunity to run for GLA, for the Lyme cause and for all Lyme sufferers, especially the kids.

Did having Lyme affect your training?

TB: I did a half marathon in April, but I didn’t start intense training until August. At the end of September, I did a 20-mile run in Greenwich and then I had to take a week off. My body wasn’t able to handle the intense training and from then on the longest I ran was 12 miles.  I questioned whether I could do the marathon, but I had already raised money for GLA and I didn’t want to let down all who had donated, so I decided I would walk to the end if that became necessary.

JR: My energy level and muscle recovery were affected. I did a 20 mile run about a month before the marathon. I noticed my body didn’t bounce back as quickly as it did before I got Lyme disease. I had to give myself an extra day to rest after my runs.

What was it like to run in the race?

jesse running nyc marathon lymeTB:  I was having trouble breathing and became quickly dehydrated. By mile 18, I was breaking down and I didn’t know how I’d be able to finish. It came down to my doing a run-walk and just putting one foot in front of the other. I was really dehydrated and nearly collapsed at the finish line. I then had to spend over an hour recovering in the medical tent. I finished in 4 hours, 12 minutes, but I expected to run it faster.

JR: I got a stomach flu the day before the marathon. That morning I had to ask myself, “okay, is this going to happen today?” I decided I would do the race, but I would run slowly and steadily. Instead of trying to break a record, I ran very, very slowly and finished in 5 hours, 11 minutes. The experience was emotional for me. At mile 22 or 23, I began to think “I want this to be over,” but I then thought about all the doctor appointments, IVs and what I went through to get to the race and I tried to stay in the present.

What was the best part for you?

toni blanchard nyc marathonTB:  It was great wearing the GLA T-shirts that were created for the race—they really stood out.  I was amazed to hear so many people along the path yelling out to me about their experience with Lyme. I also was so touched at the start when we were all gathered at the Verrazano Bridge. It’s such an international event and listening to all the different languages was amazing. Plus the support of everyone, especially little kids, along the route was great.

JR: It was a four-year journey between the last marathon I was able to run and this one—so it was very meaningful for me.  Representing the Lyme community was also very special. A lot of people at the event talked with me about Lyme.  Everyone knows someone with the disease. 

Would you do it again?

toni blanchard post marathonTB: It’s something I’m thinking about. It’s given me a lot of confidence going forward. It’s an opportunity to spread the word and raise awareness. It can be difficult to imagine getting better, but I want to give people hope and show those who are suffering that it will be okay and they can overcome.

JR: I am going to do it the next year, the next year and the next year. I can’t wait. But I’m not just running for me. Thousands of people are suffering from this disease and feel like there’s no hope. I want to show people with Lyme there is something besides the anxiety and fear that they feel day after day. I hope we have given people hope for their own recovery.

 

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.

How to Be a Good Partner to Someone with Chronic Illness

by Kerry Heckman
#MyLymeLife

How do I know how to be a good partner to someone with chronic illness? Because I have one. But that wasn’t always the case.

 

I was diagnosed with my first autoimmune disease shortly after my husband, Zach, and I got married. We’ve been married almost ten years, and I’ve been more or less sick the entire time. There was a time when Zach had very little patience with me and my ever changing symptoms.

Before I was diagnosed with Lyme disease, anxiety was one of my worst symptoms. I literally thought I was going to die. I would wake Zach up in the middle of the night, looking for reassurance for unexplained chest pain or a mole that looked different. I would jump to the worst case scenario in every situation, then perseverate on it for hours. After awhile he started walking out of the room, because he didn’t want to listen to it anymore. It felt like he wasn’t there for me.

Then, there was the year when I was really sick. I stopped being able to help out around the house and all the responsibilities feel on him. I couldn’t cook or clean, the laundry piled up in the basement. He wanted to go to concerts or out to a bar like we used to, but I was just too tired. By any definition, I was not a good spouse or partner and occasionally he would remind me of it.

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Yet something shifted after he came with me to my first appointment with my Lyme specialist. He developed patience with me. He started to listen more, and sit with me while we talked through my symptoms. Slowly we became partners in fighting Lyme.

Every day I hear heartbreaking stories of how chronic illness tears apart relationships and ends marriages. When you can’t see an illness, it’s very easy to think someone is faking it or taking advantage of the situation. Sometimes the healthy partner thinks “I did not sign up for this,” and takes off. Sometimes I think the partner leaves because he or she is not strong enough to watch a loved one suffer.

Some advice for partners:

Be there.

I’ve been known to break into spontaneous crying fits. I can only imagine it’s how annoying and frustrating that is for my husband. At first he tries to walk away and then I see the thought process going on in his mind as he slowly turns around sits down next to me. My crying fits only last a couple of minutes, then I take a few deep breaths and gather myself.

Just sitting with someone while they are breaking down is one of the most powerful things you can do, and you don’t even have to say a word.

Listen and ask questions.

Talking things out is how people process thoughts and emotions. Lyme has been described as a do-it-yourself disease. There is no standard treatment, so we have to make decisions about our treatment protocol, our diet, and our exercise regimen without much guidance. There are a lot of other things to process with chronic illness. We sometimes wonder why this is happening to us or if we’ll ever get better. Sometimes we don’t have “a point” or are not particularly good at making sense, but it helps just to talk.

When your partner asks you to read something, read it.

One of the symptoms of chronic Lyme is brain fog and we often have difficulty finding the words to express how we feel. Sometimes I find an article or blog post that I really relate to and I ask my husband to read it, so that he can understand me better. It’s a simple gesture, but it will bring you closer together. Do what you can to learn about the illness. You can even look for articles on your own, and bring them up to your partner.

Go to appointments when you can.

Like I said earlier, something changed after my husband started going to my appointments with me. I think a doctor validating my symptoms made it real for him. He knew I wasn’t making it up when the doctor said everything I was experiencing was a symptom of Lyme.

Embrace diet and lifestyle changes.

One of the most helpful things my husband has done was go on an elimination diet with me. He was having some health issues, but probably didn’t need to completely change what he was eating. It made it so much easier to do it together and we kept each other accountable.

There have been many times during this journey I have felt like a burden. Our money is spent on treatments rather than nights out, I have a strict bedtime of ten o’clock. I do not have the stamina to go to parties. But we still make an effort to make things fun, like cooking together, watching comedies to laugh together, and choosing low key events we both can enjoy.

Stand up for your partner to others.

My husband lives with me every day, while my friends see me only occasionally. He knows the truth about my illness, which I often hide from others. It makes me feel so supported when he speaks up about my illness to my friends and family. I get sick of defending myself and it’s nice that he is willing to take over.

Allow your partner space to heal.

This year my husband gave me the greatest gift he could ever have given me. He suggested I leave my job and take a part-time job. It’s allowed me the space to start the healing process.

Maybe allowing your partner to quit his or her job isn’t possible in your situation. Think about what else you can do to allow your partner space to heal. Can you put the kids to bed while he or she takes a bath? Can you help sort and pay the flood of medical bills? Can you give up a corner of your office for a meditation space? Any little bit helps.

Believe your partner, all the time, every time.

People with invisible illnesses, often feel just that, invisible. When we tell our coworkers we are in pain, but we don’t look like we’re in pain, we’re afraid they don’t believe us. A partner can be the one person with whom we don’t have to worry about being ourselves. Don’t second guess, don’t minimize, just believe.

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On the other hand, I have some advice on how someone with a chronic illness can be a good partner. Don’t expect perfection. Know that this is a hard road that no one asked for, including your partner. Express gratitude, even for the tiniest things that make your life easier.

Pass this article along to your partner. It may help to open a dialogue. However, be careful not to imply your partner isn’t doing a good job, which can easily make a person defensive. Pursue a dialogue on how you can be better partners to each other. As the patient, I have empathy for the caregiver. There is no recognition and no attention paid to your struggle. Doctors rarely ask the partner how they are feeling.

Lyme is a third wheel in our relationship. It’s something for which each person has to take some responsibility. Every day Zach is learning how to be a better husband to someone with a chronic illness. Sometimes I’m amazed at the information he has picked up about Lyme disease or my autoimmune conditions. He went from never wanting to talk about it, to bringing it up when he sees an article online.

All relationships take hard work, and when you add in Lyme it makes it ten times more difficult. While you are fighting the illness, the pain, and the fatigue, remember to also fight for each other.

Read Kerry’s previous blog, “Grieving the Loss of a Career to Chronic Illness“.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

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.

Grieving the Loss of a Career to Chronic Illness

by Kerry Heckman
#MyLymeLife

For an educator, the start of the school year is filled with energy and excitement. There are students to meet, classrooms to decorate, and coworkers to catch up with. There is an undefinable sense of hope that comes with a new beginning.

 

This fall, for the first time in ten years, when all the other educators went back to work, I wasn’t with them. Instead, I was at sitting at home watching the steady stream of “first day of school” pictures on my computer. My career as a school social worker was cut short by Lyme disease.

Two years ago, I thought I would have my job until I retired. It’s rare for someone to give up tenure, a pension, affordable health insurance, paid sick days, and summers off. However, this year I opted for a part-time job as a college counselor to focus on healing. I never thought I would be the person who checks the “part-time” box on questionnaires. My entire identity was wrapped up in my career.

I know I’m not alone. I’ve heard countless stories of teachers, doctors, and successful business people who were forced to leave behind a thriving career when illness struck. The careers they had worked their entire lives to build were suddenly gone or placed on permanent hold. Last year the mayor of Monticello, Illinois, resigned due to complications of Lyme disease. When he resigned at a town council meeting, he said, “I do this with great regret. It’s one of the hardest things I’ve had to do.”

I couldn’t agree more.

Leaving my job was truly the hardest decision I’ve ever made. This past summer, I agonized over whether or not to go back. I loved my job and I was making enough money so that I wouldn’t have to worry about the high cost of Lyme treatment. I’d developed lifelong friendships with coworkers and every day I got to make a difference in the lives of young people. On the other hand, I wasn’t getting any better, in fact I was getting worse. On a typical weekday I went from my bed, to work, to the couch, back to bed. I was living half a life.

i'd known other people who left jobs

I’d known other people who left jobs due to illness, and I always thought, “That will never be me. I will never get to that point.” I worked through the worst two years of my illness. The first year I missed 14 days of school because of doctor’s appointments, being bedridden and a hospitalization. The second year I pushed through the year only to crash for an entire month of the summer. For the last two years, the beginning of the school year felt less like returning home and more like a shift back into stress, fatigue and pain.

For people with chronic Lyme disease there comes a point where you can’t do the things you used to do. You may not be able to work, engage in creative pursuits, or even socialize anymore. For some people the reality is disability and incapacitation. The difficulty is compounded because Lyme is an invisible illness and outsiders don’t understand why you can’t work. Other people think not working or working less is a gift. They don’t think about the terrible suffering, the symptoms of the illness, or the fact that many people actually  want to work. They want to make a contribution to their family’s financial and emotional security and feel like they have a purpose in life.

When there is a loss, you need to go through a grieving process. You need to allow yourself to be sad, confused, and even angry. For me, it’s difficult, because I don’t know what to call myself anymore. I hold a social work license, but I’m not doing social work. I have to grieve the loss of what could have been, then find a way to move beyond it.

Recently, I’ve started walking a labyrinth in a nature preserve by my house. It’s a walking meditation where you walk along a circular path. It has many switchbacks and turn arounds, but you’re always moving closer to the center. I’d heard of labyrinths as a place to go when you’re going through a difficult time in your life. The first time I walked the labyrinth was shortly after I left my job. As I was walking the path one day, I realized it was a metaphor for life. There are setbacks and times you need to turn around and retrace your steps, but even so, you are always making progress. I didn’t know what was at the end of the labyrinth; when I got to the center, the word “hope” was spelled out in a mosaic. No matter where your life takes you, no matter the losses you must endure, whether it be illness, the loss of a job, or the loss the life you thought you’d have, it’s important to know at the center of it all is that tiny word, hope.

Hope like the first day of school.

The final stage of the grieving process is often referred to as “acceptance and hope.” During  this stage we stop wishing for the life we used to have and accept the new normal. Maybe one day I will go back to being a full-time social worker, or maybe not. Right now, I’m trying to look at the loss of my career, not as a loss, but as a beginning. Maybe my job needed to go away in order for me to find a different path, a better path.

Chronic illness has changed me. It changed the way I see the world and changed my goals. Even if the only goal right now is just to get better, I can’t think of a more noble one than that.

Read Kerry’s previous blog, “The High Cost of Telling Someone You Don’t Look Sick“.


 

kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Dream Like New

by Susan Pogorzelski
#MyLymeLife

I used to revel in the thought of living in solitude like Thoreau at Walden Pond. A cabin nestled between pines, a farm sprawling across a dozen acres, a cottage by the beach—I imagined these places bringing peace and comfort and a quietude that is rare these days, among the go-go-go rush for something—anything—so long as it looks like living.

But certain kinds of silence breed loneliness, and loneliness will drive you mad.

Right now, my life is divided into before and after, then and now. Before I was sick and after. Then, when I fought this disease for three years, and now, when it’s already been a full year since I relapsed after only a few months in remission. Before, I got through it with the help of family and friends and my pets, a job to return to, and a dream to pursue. Now, while I’m still so grateful to have my family, my friends, and the unwavering companionship of my dogs—please don’t ever mistake these thoughts for ingratitude—I’m having trouble coping with the isolation and loneliness that stems from living with Lyme disease.

I can’t do much more right now than bide my time until the fatigue sets back in and I have to close my eyes. When I write, I’m able to put down a few sentences at a time before the words get muddled in my mind and the fog becomes too thick. Short walks let me bask in the fading summer sun, but it isn’t long before the pain in my legs make me grow weak, and I have to rest again.

I hear kids’ sneakers slapping against the pavement as they run up and down the alleyway behind my house, hear women chatting with giggles in their voices as they power-walk past my open windows, hear my neighbors on the porch in a symphonic blend of togetherness, and I want to be a part of it—I want to be a part of the world. Outside life slips through the cracks beneath the door, and it only takes a second before I realize how lonely I am within.

Social media gives me an outlet—a chance to catch up and be with friends when I’m limited in where I can go—but I see pictures of vacations and posts about projects they’re working on and where they’re going, and I want to cry.

Because I can’t go anywhere but here, and here doesn’t feel like anywhere.

But I’m too numb to cry, so I let the envy fester beneath the surface and mix that with self-loathing for not living a life that’s supposed to be precious in the first place and add it to the guilt of being too sick to be a part of anything. I become a cocktail of loneliness while the darkness wraps a blanket around me like it’s some kind of comfort, whispering, there, there, stay here with me.

I don’t know what I’m supposed to be doing. Everyone says I should only concentrate on getting better right now—it’s the line I fed myself to assuage the guilt of not being able to work—but it doesn’t feel like enough.

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I’ve spent the majority of my life ill, and still I pushed through it. I went to college and traveled and worked so hard to create a future for myself, to pursue a dream, to build a career, and to define my own success. When I was finally diagnosed, all through treatment I relied on the knowledge that one day I would be better and could live my life at full-throttle. Everything I had worked for, I believed, could be realized when I was healthy again. It’s what kept me going—knowing that hard work pays off.

That was then. Now, this relapse has flung me back into the darkness of this illness, where everything I worked for seems to have slipped away once more. I want to keep fighting. I want to pick up the pieces and put them back together again, to keep working harder, but I’m so tired.

I’m so tired.

I don’t know what I should be working for anymore. Every day, I spend an hour between naps plugging away at my writing because I would drown without a place to put these words. Every day, I work at creating some semblance of a future for myself when I don’t know if the dream is worth the fight and the fatigue. Most days, I question what the dream even is anymore, wondering if even that has faded.

I can’t bear my days like this. This idleness means I’m only existing when I want to be out there, living. But I remain limited, trapped, wrapped up in this illness and the mix of emotions that accompanies it, even as I continue to get better. Even as my spirit grows stronger than it’s ever been before.

I don’t know what my future has in store now. For the first time in my life, there is no plan. What I could once envision so clearly is now an echo of the life I wanted. But I’ll keep waiting. I’ll keep fighting. I’ll put those other dreams to rest for now and concentrate on the only one that matters:

To live.


 

Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

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. 

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

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!