Tag Archives: living with lyme

william beesmer_planned giving_blog

William Beesmer: Why Giving Back is So Important for This Lyme Patient

Life hasn’t always been easy for William Beesmer, a life-long resident of West Hurley, New York. Born into an impoverished family in 1943, he and his 15 brothers and sisters grew up in a home without the conveniences many of us take for granted—there was no electricity, no indoor toilet, not even a refrigerator (ice was delivered and stored in an ice box). His father died suddenly of a brain aneurysm at age 48, a few months before Beesmer’s mother gave birth to their 16th child.

Beesmer still vividly remembers how his family had lived on food they received from welfare, friendly neighbors, and “lots of bartering” for credit at the local general store. Then, to make things worse, his family lost their home in a fire when Beesmer was still a teenager.

Neverthless, rather than lament his situation, Beesmer refused to let his circumstances color his outlook on life. Instead, the now-retired business development executive calls himself “damn lucky.”

He recalls how many people helped him as he was growing up. When he declined his high school guidance counselor’s suggestion to join the track team because he had a job in the local grocery’s produce department, the guidance counselor—also the track coach—reworked Beesmer’s classroom schedule so he could participate in sports and still hold the job. Beesmer wound up earning multiple varsity letters in track, football and basketball.

Moreover, when he thought it wasn’t even worth applying to a college because he couldn’t afford the tuition, he learned—much to his amazement—that his guidance counselor had actually already applied for him. Beesmer left high school with an award for “Admirable Determination.” Two years later, against all odds, he says, he graduated from SUNY-Delhi with an Associate’s degree in accounting.  Beesmer then earned his B.S. degree at Marist College in Poughkeepsie, New York.

Fast-forward to six years ago. Beesmer was well into comfortable retirement when, after seeing countless doctors, he was diagnosed with Lyme disease. He had been suffering from pain, he says, “so excruciating that sometimes I wished I was dead. Lyme really hits your psyche!” Beesmer also experienced muscle atrophy, knee damage requiring surgery, and could not walk or drive for almost a year without aid of crutches, cane or a walker.

Once again, Beesmer says, he was helped by his many friends and family members who assisted him during doctor’s and hospital visits, grocery shopping, cleaning his house, doing yard work and a host of other tasks.

Although he is feeling much better today, Lyme continues to affect his daily life with brain fog, fatigue and physical imbalance. “I was an active individual sometimes playing 36 holes of golf a day,” he says. “Now I’m lucky if I can play nine holes. And I can’t ride my bike anymore because I’m afraid I’ll fall off.”

Yet Beesmer has been left with a deep appreciation of the many blessings he’s received throughout his life. “It boggles my mind how many people helped me along the way,” he says. “That’s why I want to help others. I’ve become pretty benevolent.”

Among other philanthropic efforts, he has funded the “William Beesmer Admirable Determination Scholarship” at his former high school and has endowed an annual scholarship for college-related expenses at SUNY-Delhi, where he served on the College Foundation’s Board of Directors for 20 years.

A year ago, Beesmer decided he wanted to support Lyme disease research. He looked at a number of organizations before making a decision about which one to support. “I wanted to see the financial statements, what the organization had done, what it had accomplished,” he said. “Then I spoke to someone at Global Lyme Alliance (GLA) and they gladly gave me the information I needed. They were totally professional and financially impressive. GLA surfaced to the top of my search very quickly.”

In addition to his making a financial contribution, he is helping GLA with its ongoing fundraising efforts. “To date, the organization has funded more than $12 million in innovative research grants,” he says. “But this isn’t enough given the rampant spread of Lyme and related diseases with no cure or remedy currently available.”

Recently, he sent a letter to friends, family and others he knows asking them to donate to Lyme research. “I am not doing this for me,” he wrote, “but for the many others suffering from this obscure disease.” To date, he has raised over $75,000 and is quick to add that it’s not too late to give: GLA.org/donate.

Beesmer also complemented his philanthropic giving by volunteering to become a GLA Ambassador, as such he’ll engage with and educate his community about how to prevent tick bites, presently the only sure fire way to avoid Lyme and its tick-borne co-infections. Among his other activities, he plans to speak to the Hurley Senior Citizens, his local Church, and have a one-page letter in the church’s monthly newsletter.

The general public needs to be made aware of the risk of this horrific disease and how to protect themselves,” he said. “I want to provide them with that knowledge and make a difference in their lives.”

To ensure that his funding continues well into the future, Beesmer has—like many who choose to support their favorite charity—included GLA in his estate planning. “A lot of people don’t think about giving to a nonprofit until it’s too late,” he says. “Including a gift to GLA is easy—it only takes one sentence in your will—and ensures you make a lasting commitment.” Because the gift doesn’t occur until after your lifetime, he noted, it doesn’t affect your current budget plans and you can change your mind if you want, making it easy for the gift to align with your life circumstances.

“You can give a donation now or give funds later,” Beesmer says. “It’s up to you. But it’s important to make the commitment to help. I hope others will join with me in fighting to eradicate Lyme in the not too distant future.”

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Global Lyme Alliance stands ready to help you with an array of gift planning options. Whatever your wishes, GLA can work with you and your advisors on the solution that best fits your needs. Please contact Stacy Velarde at 203-921-7572 or [email protected].

In the Lymelight podcast graphic

Podcast: In The Lymelight – Dr. Casey Kelley

WELCOME TO IN THE LYMELIGHT: A SHOW ABOUT…WELL…LYME DISEASE
Season 2, episode 4

Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Lymelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco: I hope you enjoy listening in as much as I enjoy talking.

In our fouth episode of season two of In The Lymelight, Alex sits down with doctor and fellow Lyme warrior, Dr. Casey Kelley. Dr. Kelley and Alex discuss how Dr. Kelley’s own health journey brought her to helping others, why Lyme is so difficult to treat, the challenges in testing for Lyme and mold toxicity.

 

For interview suggestions, information or just to say hi- you can connect with me on instagram at: @alitmoresco.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with me at: @alitmoresco

In the Lymelight podcast graphic

Podcast: In the Lymelight – The Intuitive Swan, Kelsey Mazeski

WELCOME TO IN THE LYMELIGHT: A SHOW ABOUT…WELL…LYME DISEASE
Season 2, episode 3

Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Lymelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco: I hope you enjoy listening in as much as I enjoy talking.

In our third episode of season two of In The Lymelight, Alex sits down with friend and fellow Lyme warrior, Kelsey Mazeski, also joined by comedian Chris Jones. Kelsey, Alex and Chris discuss Kelsey’s challenge in getting a diagnosis after suffering heart problems and seizures, creating a meaningful life while living with chronic illness…and we touch upon dating while ill.

You can follow Kelsey on The Intuitive Swan: www.theintuitiveswan.com

For interview suggestions, information or just to say hi- you can connect with me on instagram at: @alitmoresco.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with me at: @alitmoresco

brooke procida_lyme journey

A Different Kind of Lyme Journey

Brooke Procida Takes to the Road to Promote Lyme Disease Healing

 

Many of us have embarked on cross-country adventures with plans to enjoy America’s superb national parks, cultural landmarks and regional cuisine. But Brooke Procida, an actress/writer/producer who has appeared on such TV shows as “Family Matters,” “The Sopranos,” and “As the World Turns,” is now on a journey that one might describe as participating in the business of humanity.

On an eight-day car trip that started on January 17 in Hilton Head, South Carolina and ends in Los Angeles this Thursday, Procida—a Lyme warrior who believes she went undiagnosed with the tick-borne disease and several other co-infections for more than 30 years—is meeting and interviewing patients, doctors and healers. She is joined on her journey with a crew of four who are filming her interviews for a “LymeLight Journey” docu-series.

Procida’s goal, she said, “to provide hope and inspiration” to countless individuals who are coping with Lyme disease and various other illnesses that “are often difficult to diagnose, expensive to treat and have often been deemed ‘incurable.’

“I have been all over the world,” Procida said.”I’ve seen hundreds of doctors and specialists and spent a lifetime researching health and healing,” she says. “Few persons have more information and experience than I do, which uniquely prepares me to undertake this journey of discovery and healing.”

brooke procida
Brooke Procida (left) on her LymeLight Journey, joined by Hannah Pips photo @lymelightjourney

The Long Island native who said she is “completely recovered” from Lyme,  says she wanted to take her story on the road to talk with others who have recovered from “incurable” illnesses as well, and to “make sure that we as a nation start to look at incorporating and covering integrative therapies in this country, especially in cases where conventional medicine falls painfully and blatantly short.”

Procida says she thinks she first started suffering from Lyme when, at eight years old, her knee swelled inexplicably. Specialists thought she might have rheumatoid arthritis. Then she started to suffer from “massive chronic fatigue” followed by vertigo, panic attacks, chronic sinus infections and colds. She saw countless doctors and underwent numerous treatments. All through my twenties and thirties I was never one hundred percent,” she said. “There was a lot of confusion, sickness and pain.” One day in 1995, she said, she felt so sick and that she was certain she was going to die.

Her career constantly derailed, it wasn’t until six years ago that an integrative medical physician finally tested and diagnosed her with Lyme. “I asked my mother,” Procida said, “how could I have lived in Long Island and not known that Lyme was a real threat?”

Over the course of the next few years, Procida says she was “barely existing…all I was doing was surviving.” At one point, though, after “many times of being incapacitated,” she went to an integrative healing center in New York.

I visualized myself getting better. I knew I was done being sick,” she said.

Today Procida is eager to share her experiences with others and hopes she can serve as an example to those who feel there is no chance of ever recovering. “I want to give people hope,” she says. “Without hope, nothing will work.”

She and her crew have already filmed interviews in New Orleans, LA; Tallahassee, FL; New Orleans, LA; Austin, TX , and Lubbock, TX. For the balance of the trip, they will be in Phoenix, AZ; Palm Desert, CA and Los Angeles.

Procida’s LymeLight Journey project is being completely funded by way of a Go Fund Me page. For further information, go to LymeLightJourney.org

What is Air Hunger, Anyway?

By Jennifer Crystal

Chronic Lyme disease & its co-infections, like Babesia, can produce unique symptoms. One of them is referred to as air hunger.

When I tell people I have chronic Lyme and some of its co-infections, they often look at me quizzically and ask: “What’s a co-infection?” I explain that in addition to Lyme ticks can transmit other diseases as well. I get an understanding nod until I say the names of the diseases. Rarely have people heard of them: Babesia, Ehrlichia, and Bartonella. One of my graduate school professors got so tired of trying to say “Babesia” that he jokingly renamed it “babelicious.”

I get a similar reaction when I tell people that a chief symptom of Babesia is air hunger. Some hear the term and think of marathon runners or asthma patients. Most really have no idea what it actually means. Literally, it means to be hungry for air. But how is that related to Babesia, and what does the symptom actually entail?

Babesia is a parasite that eats the oxygen in red blood cells. This result is low blood oxygen levels in the body. When you are hungry for food, your stomach might grumble, and you might feel a gnawing or emptiness, a craving for sustenance. You might become lightheaded or even faint. The same is true when your blood is hungry for oxygen, except you feel the hunger in your cells rather than in your stomach.

You know when exercising how you can feel your blood pumping, whereupon endorphin release makes you vivacious and energized? That feeling when your muscles are a little tired from running or biking, but you’re also exhilarated, hitting that “runner’s high” when you feel like you can do a million jumping jacks?

I used to feel that, too. I used to ski for eight hours in the back bowls of the Rocky Mountains, bouncing through mogul fields with reckless abandon. And at the end of the day, my body would be loose and limber. I was tired, sure, but it was nothing that a good meal and a good night’s sleep couldn’t fix. The next morning, I’d be ready to ski again.

Then I got Lyme, Babesia, and Ehrlichia. At first, before the illnesses were properly diagnosed, I simply noticed that I couldn’t keep up with my fellow skiers as I used to. I tired more easily, needed more breaks, and often experienced blood sugar crashes and lightheadedness after a particularly intense run. Skiing at a high altitude means there’s less oxygen available, to begin with, but what I didn’t know was that a blood parasite was also compromising my oxygen levels.

As the tick-borne illnesses slowly took over my body, my post-exertional fatigue and hypoglycemia increased. Sometimes I’d experience these symptoms when I was simply walking down the street. I started to get terrible migraines, always after exercise but sometimes just after a long day of teaching, and sometimes for no apparent reason at all. What I didn’t know was that the oxygen level of my red blood cells was getting lower and lower, causing these debilitating symptoms.

One day towards the end of my second year of teaching in Colorado, I tried to go for a short hike near my apartment. I barely made it a few feet up the dirt path before I found myself gasping for air. I wanted to take a deep breath, but couldn’t get one. As I clutched my chest, another hiker asked if I was okay. “Asthma,” I wheezed, even though I’d never experienced that condition before.

A doctor did diagnose asthma but didn’t explain the sudden onset. He didn’t realize that my gasping for breath was a literal manifestation of air hunger caused by Babesia. Instead, he gave me an inhaler, which I sometimes needed to use in class; in the middle of a lecture, I would get so lightheaded and short of breath.

Later, when I was finally diagnosed with and treated for tick-borne illnesses, I experienced Herxheimer reactions so bad that skiing, hiking and even walking became activities of the past; I could barely get up a flight of stairs. Often my arms and legs would feel jumpy like I was having a panic attack. This is because they weren’t getting enough oxygen; the jumpiness was their way of “grumbling” like a stomach does when it needs food. My limbs felt, how can I put this? They felt empty, the opposite of the way they used to feel when they were pumped full of healthy oxygenated blood during exercise. I wanted to take a deep breath and send the air right to my limbs, right to my cells, to re-invigorate them, but I couldn’t.

Overeager during treatment, I started physical therapy too soon, and paid for it. A mere thirty seconds on a stationary bike left my limbs gasping for air. It seemed like a thick molasses was seeping through my whole body, weighing me down. A heavy sensation crept into my head, filling it with pressure until I was overtaken by a full-blown migraine. After, I was in bed for a week.

The good news about that experience is that it told my doctor I needed to increase my Babesia treatment. Anti-malarial medication got me back on my feet, eventually back on the stationary bike, and, finally, back on my skis. I don’t think I’ll ever be able to bounce through moguls for eight hours at a time again, but I can ski a full morning without getting air hunger. I can paddle-board or canoe for hours. Sometimes, when I push myself too hard, I feel a tightening in my chest for a day or two after exercise. And sometimes I begin to feel air hunger in my cells as I’m walking around the city, getting that jumpy feeling in my limbs when I climb a flight of stairs or get a headache shortly after exercise. This tells me that it’s time to increase the homeopathic drops I now take to keep Babesia at bay.

Now I can say to my doctor, “I’m starting to feel some air hunger,” and he knows exactly what we need to do. Hopefully, this explanation will be a revelation for those readers who, like me, were so long perplexed by this frightening undiagnosed symptom.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at [email protected].

kerry heckman

I’ve Been Sick So Long I Can’t Remember What it Feels Like to be Healthy

by Kerry Heckman
#MyLymeLife

Lyme disease, like a shadow, is always there even if you don’t see it.

 

Every facet of a person’s life is affected by it. It determines when and what we eat, when and how we sleep, how and if we work, how and if we are able to exercise, what our relationships are like, etc. There’s life and then there’s Life With Lyme.

It was 10 years ago, when I had the first sign that something was seriously wrong with my health. At the time I called it a bad shoulder and chalked it up to improper technique while exercising. Two years later, I was in the ER with a rapid heart rate, which was in time diagnosed as a thyroid disorder. A couple of years after that I felt so ill during the summer that I couldn’t get off the couch for two weeks.

Then things started to happen more rapidly, the shooting pain, night sweats, headaches, and blurry. Eventually I was diagnosed with Lyme disease. It’s been ten years of doctor’s appointments, physical therapy, scans, and blood tests.

At this point I can’t remember what it feels like to be healthy.

I forget what it’s like to skip a meal because I’m not hungry and haven’t planned out meals days in advance. I have to eat three meals every day, because I take a handful of medication with each one. Most people can plan simple meals and eat on the go. Since I’ve been eating a gluten-free, dairy-free, and sugar-free diet, meal planning and prep is a big time commitment.

I forget what it’s like to go to an exercise class and push myself to my limit. I used to take cardio fitness classes and enjoy getting my heart rate up as high as it would go. Now, I have to be conscious of how much energy I expend and not deplete myself. When you are healthy, exercise gives you more energy, when you have a chronic illness, it drains your energy.

I forget what it’s like not to have to keep track of meds, supplements, and other treatments.

Every week I spend a half an hour dividing pills into little containers. There are five prescription medications and 10 supplements that I have to keep track of for refills (which is low for most Lyme patients). I have a very detailed calendar of my complementary treatments and doctor’s appointments, that I constantly have to plan my life around.

I forget what it’s like to not have to ration my energy.

In the past there were few limits on my energy. I could plan activities from sun up to sundown. Now I have to look at my days and weeks and determine how much activity I can handle before I make plans. If I have a particularly busy day or week, I need to take a day or two off to recover.

I forget what it’s like to spend money on wants, and not medical bills.

Each month I shell out around $300 for medications and supplements. As for medical bills, I always reach my out of pocket maximum and then have to pay doctors for treatments that are not covered by insurance. My health is priceless, but it sure costs a lot of money. Moreover, I took a part-time job and cut my earnings by a third. It hurts to ponder what that money could buy, so I try to keep my mind off of it.

When I was healthy, I saw the doctor once a year for a check up, then maybe once more times for a vaccine or acute illness.

This past year, I’ve had 68 appointments for either a doctor, treatment, scan, or blood draw. I’m guessing that is low for some Lyme patients and high for others, but that’s  a lot of time out of my life scheduling and attending to appointments that manage my illnesss.

I forget what it’s like to not have symptoms every day.

With Lyme not a day goes by that I don’t have at least one symptom to remind me of my illness. It rotates between pain, insomnia, brain fog, fatigue, headaches, heart palpitations, and some days some combination or all of the symptoms are present. This leads to anxiety about what symptom will manifest next in addition to the other symptoms. It leaves me wishing for one day to pass without a symptom.

So, what is it like to feel normal?

Most people never feel completely normal all the time, even if that unease isn’t health related. There are however many persons who go throughout their life and don’t ever give a thought to the things a chronically ill person thinks about. Normal for me would be to live a healthy life, but for my medical matters to be mere background noise, not the main event.

While I forget what it’s like to be healthy, I also forget what it’s like to live without gratitude for what good health I do possess. I forget what it’s like to live without a community to lean on, and most importantly, I forget what it’s like to take life for granted. I’ve learned how important health is to overall well-being and plan to improve mine in any way possible.


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.

lyme warrior_lyme Q&A

Dear Lyme Warrior … Help!

by Jennifer Crystal

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

 

Do you have a question for Jennifer? Email her at [email protected].

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

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

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

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

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

 

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

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

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

 

What helps most with low blood sugar?

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

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

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

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

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


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at[email protected]

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 [email protected]

lyme caregiver

Care Versus Overcare: A Fine Line

by Jennifer Crystal

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

 

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

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

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

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

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

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

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

For Lymies:

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

For Caregivers:

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

For Both:

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

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


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

#teamgla

One Family’s Motivation to Raise Awareness About Lyme Disease

by Global Lyme Alliance
#TeamGLA

Team Gottlieb is running on #TeamGLA in the Tough Mudder for their Mom

Kathie Gottlieb has always loved the outdoors and spent as much time as possible hiking, gardening and riding horses near her New York State home.

So when she started feeling tired and not her usual active, energetic self, she knew something was terribly wrong. She went to numerous doctors searching for answers but, invariably, she was declared “fine” or “stressed” and given an antidepressant since she was “a woman of a certain age,” as she recalls.

When she started feeling tired & not her usual, active, energetic self, she knew something was terribly wrong.

In 2010, after three and a half years of suffering, she was finally diagnosed with Lyme disease. By then she was experiencing fatigue and weakness so pervasive that she was bedridden and had to resign from her job as a language teacher. In the years since she has been able to return to work, but only one and half years before symptoms forced her departure again. (Kathlie Gottlieb, pictured left)

Today she lives with a host of debilitating problems—cognitive defects, significant sleep disruption, overwhelming fatigue, migrating muscle and joint pain, brain fog, tinnitus, neuropathy, digestive issues, plus light and sound sensitivity. As a result, Kathie is unable to attend most family gatherings or other social events—something that deeply pains her and her family.

Lyme really sucks…I’ll be the first to admit I didn’t know a lot about the long-term damage it could do before my mom was diagnosed. Now I hate to think that other people will go through what my mom has…

On July 23, Kathie’s three children & her son’s girlfriend will be supporting their mom and Global Lyme Alliance (GLA) by taking on the Tough Mudder Half Long Island Challenge to raise funds for Lyme and tick-borne disease research and education. The Tough Mudder event is a five-mile mud obstacle course challenge that will take place at Old Bethpage Restoration Village in Old Bethpage, NY.

Lyme really sucks,” says Kathie’s daughter, Victoria. “It’s not something to be dismissed as not dangerous to a person’s health. I’ll be the first to admit I didn’t know a lot about the long-term damage it could do before my mom was diagnosed. Now I hate to think that other people will go through what my mom has, along with the family members who are affected in their own way.” (pictured left, Victoria & Kathie Gottlieb)

 

The Gottlieb family (Team Gottlieb) chose to partner with GLA, the leading nonprofit dedicated to conquering Lyme and tick-borne disease through research and education, because “we wanted to support an organization that understands what our family has dealt with for so long now,” said Victoria, “and to support a cause that hits so close to home.” (pictured right, Team Gottlieb: Nick, Victoria, Julian, and Nici)

Why GLA chose Tough Mudder as an official charity partner

While Tough Mudder challenges people for only a few hours, unlike the full-time suffering of tens of thousands of Lyme patients, we believe the symbolism is meaningful.

“We feel there’s a special connection between GLA and Tough Mudder because the mud obstacle course tests people to their limits, just as having Lyme tests sufferers to their limits,” said Scott Santarella, GLA’s CEO. “While Tough Mudder challenges people for only a few hours, unlike the full-time suffering of tens of thousands of Lyme patients, we believe the symbolism is meaningful.”

Santarella, who serves as Captain of Team GLA, said that individuals can bring awareness to the challenges of Lyme disease by participating in the event. “We also hope to raise significant funds to invest in innovative scientific research and results driven efforts for the benefits of Lyme disease patients and their families,” he said. Since 329,000 people are affected with Lyme disease annually, Team GLA hopes the July 23 event will raise $32,900 for Lyme disease research & initiatives. (Pictured left, Scott Santarella)

To learn more about GLA’s Tough Mudder event or how you can donate, click here.

 

 

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.

organize your medications

7 Tips to Organize Your Medications

by Jennifer Crystal

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

 

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

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

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

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

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

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

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


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

You’re Not Alone Anymore

by Jesse Ruben
#MyLymeLife

My battle with Lyme Disease was easily the most difficult experience of my life. A journey that lasted almost 3 years, that included more than 15 doctors, several incorrect diagnoses, and countless days where I wanted to give up. One of the worst parts of my illness, besides my symptoms, was my loss of identity. I am a singer/songwriter. I love my job, and everything that comes with it. The traveling, the writing, the performances, and especially interacting with audience members. So much of my life was wrapped up in my job. When I got sick, all of it was taken away. Are you still a writer when you haven’t written anything in years? Are you still a singer if you never sing? I was scared that my illness would take away what made me unique, and what made me proud of myself.

Sometimes, I write songs because I want to, and sometimes, I write because I have to. Some songs I write hoping that millions of people will hear them and love them. Some I write just for me, to help me deal with whatever is going on in my life. I wrote “You’re Not Alone Anymore” to process what it was like for me during the height of my illness. The loneliness, the self-doubt, and fear. Fear of not getting better, fear of not being heard or understood. I never intended for anyone to hear it. Until my girlfriend and I were invited to Something Inside So Strong, a Lyme disease conference held at The Royal Theatre Carre in Amsterdam. We were interviewed about what it is like to be a couple where one person has Lyme and the other doesn’t. She shared about having to give up the idea that she could be my whole support system, because she knew I needed other people with Lyme to help me through that process.

WORLD PREMIERE 'YOU'RE NOT ALONE ANYMORE' | Singer songwriter Jesse Ruben: ‘This is a song that I started writing when I was at the worst of my symptoms and that I finished when I got better. I have never played it for an audience, because I never felt like anybody would get it.’ I'm so grateful Jesse, for your heart warming performance at Something Inside So Strong, the Lyme event in Amsterdam.

Posted by Fred Verdult on Sunday, July 2, 2017

 

When it came time for me to perform, I decided at the last second, in a room full of 800 people with Lyme disease, to perform “You’re Not Alone Anymore“. I could tell from the audience reaction that it was the right thing to do. Since the performance of the song was posted online a few days ago, the song has been shared more than 500 times and viewed over 24,000 times. It just shows you how big this community is, and how many people are suffering.

I hope the song gives people hope. I know how hard the process of dealing with Lyme can be.


Opinions expressed by contributors are their own.

Jesse Ruben is a singer/songwriter. Learn more about Jesse’s music, his battle with Lyme and his inspiring “We Can Project” here.

A Letter to My Sick Self

by Bonnie van Geffen
#MyLymeLife

One Lyme Warrior’s Letter to Herself

 

Dear Me, Dear Humiliated Me,

Please don’t ever call your body weak again. It had to fight so much for so long, that it’s one of the strongest you’ll ever meet. It had to carry so much and it fought so hard for you. Never forget that progress is a slow process.

Please don’t ever feel guilty again of not being the perfect friend, girlfriend, daughter or employee. You are not your disease. You’ve tried more than everything to keep up with life, but in the end, you lost. You fought an incredible battle. But a setback is just a set-up for a comeback. And one day, you will be winning again. You’ll proudly show your scars and scream “I’ve survived”.

Please don’t ever feel ashamed again, for not remembering things and asking questions when you should already know the answers. Memory loss is part of the disease, and some day your brain will function properly again. Remember that the people who love you, don’t blame you. So why blame yourself?

Don’t compare yourself to the girls who post sunny holiday pictures with the cutest outfits. When these girls wore sunny outfits, dresses, daisy dukes and high heels, you wore sweatpants 7 days a week. And you know what? That is okay. Really, it is. Your time will come too, and then you’ll feel confident and maybe even sexy. And you’ll buy all the dresses you can dream of. And the shoes too, of course.

Don’t accuse yourself of being difficult to love. Don’t you dare tell yourself that ever again. There is so much to love about you. When you feel hate for yourself, you are actually hating Lyme disease. But there is more to you than that. You are loyal, giving, generous and have such a big heart. Even with this debilitating disease and unreal medical bills, you still support people you love and give a lot to your family. And almost never ask for anything. Your soul is pure and your intentions are always good. Don’t blame yourself for the negative thoughts, but learn to understand that they are a part of this process. There will be a day when you will tell your mind to shut up when the bad thoughts will come again. You will beat this negativity. Yes, you will.

Don’t hate yourself. Stop hating your body. Your legs carried you through the hardest parts of your life. Your arms are strong. Yet they are also soft and can be used to cuddle and hold the ones you love. When you’re finally able to workout again, it will feel like the biggest victory you’ll ever know. I promise you that if you learn to appreciate yourself, your body will glow again. The scars will be evidence that you have won the fight. Celebrate the future and be thankful.

Please forgive your former friends for not being able to understand what it really means to be sick. They simply cannot empathize with you, and their lack of trying doesn’t mean they are bad people. It just means that life got in the way. Take it as a lesson learned. Now you know who really has your back. If you dare to let go, life will reward you with new people who will see the good in you when you feel lost or disoriented.

Please get rid of the idea that you can never thank your loved ones and friends enough for putting up with you. It’s not necessary to give them money or gifts. Remember that they support you because they choose to. Cherish them, and pay them back with love and unconditional friendship, because that is more than enough.

This is not your fault. Lyme disease is not your fault. But ten years ago, this stupid tick bite happened to you. Since then you’ve lost control over your body and life. If you blame yourself, please remember the tick bite and try to blame the tick. Quit being impatient, pat yourself on the back and remember how far you have come. You can do this. Hell yes, you can.


Opinions expressed by contributors are their own.

Bonnie van Geffen is a 29-year-old Lyme warrior from The Netherlands. She has experienced symptoms for many years but was officially diagnosed with Lyme disease a few years ago. After her initial treatment, Bonnie’s symptoms have now returned.

When I Miss My Life Before Lyme

by Kerry Heckman
#MyLymeLife

Do you reminisce about your life before Lyme?

 

This morning my co-worker walked around to each of our offices to tell us that there were muffins the conference room left over from a meeting. Every time I passed the conference room the fresh blueberry muffins were calling out to me from the paper plate. I argued with myself throughout the day — it’s just one little muffin. What could it hurt? But I know what it would hurt. It would ramp up the inflammation in my body, eventually leading to aches and pains in all my joints. All that from a plate of muffins, which most people wouldn’t even think twice about.

I try not to live in the past. It’s not a good use of my time and energy to wonder what could have been…What would’ve happened had I never gotten sick? What if there had been better information about prevention at that time and I had gone to the doctor after those tick bites? What if my body was able to fight off the bacteria?

But there are days. Days when I miss staying out late at night. Days when I miss eating anything I want. Days when I miss not taking handfuls of pills and supplements with every meal. Days when I miss feeling full of energy.

When you are diagnosed with a chronic illness your future becomes full of unknowns. Chronic illness is a lifetime companion. Even if remission occurs, there is always the fear that it could come back, so I doubt I’ll ever entirely return to my old ways of going to all day festivals or binge-watching TV shows until three in the morning. This new life is here to stay, and sometimes I really miss the old one.

Summer is especially difficult. Some of my fondest memories are of being on a roof deck restaurant in Chicago. My friends and I would go there on warm days and drink cold beer and eat giant soft pretzels cooked on the grill. Because of antibiotics my skin is now sensitive to the sun, so roof deck restaurants are no longer an option. I probably wouldn’t enjoy it anyway, because the diet I follow doesn’t allow alcohol or gluten.

I don’t spend as much time outside during the summer anymore, because I’m afraid of reinfection. I miss walking on nature trails without fear and not worrying when my dog runs behind our garage into the brush. I used to see the beauty in a field of tall grass, now I just see the potential for ticks.

What do I do when I miss my life before Lyme? I allow myself to be disappointed for awhile. It’s okay to be sad that things are different now.

After the disappointment, I shift my perspective and give myself some gentle reminders. I have a chronic illness, not a terminal one. My illness is not rare, and there is a community millions strong I can lean on for support. My illness may not be curable—yet—but it is treatable.

It’s only then that I’m able to think about the ways I’m grateful for Lyme. Lyme has offered me the chance for personal reinvention. Instead of just being the person who can’t do things she used to, I’ve decided to become the person who explores the new things I am able to do. I’ve taken up meditation and gentle yoga. When I make travel plans, I look for places with plenty of opportunities for rest and relaxation. I’ve shifted my finances away from nights on the town and toward massage therapy and organic food. My focus has shifted from outward to inward and I’m okay with that. I like the new, low-key version of me.

Lyme has also taught me not to take anything for granted. I may not be able to eat a muffin or sip beer on a roof deck, but there is still a world of things that are available to me, like the occasional gluten-free cupcake or going to an organic farm-to-table restaurant with big open windows that let in a cool breeze in from outside.

There will always be reminders of what it was like before Lyme and sometimes I will feel nostalgic and even sad. It’s taken some time, but I’ve learned to love my life with this diagnosis.

Read Kerry’s last blog, “Meditation and Lyme: How It Helps, How It Doesn’t“.


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.

Meditation and Lyme: How it Helps, How it Doesn’t

by Kerry Heckman
#MyLymeLife

Without a cure, meditation can provide a relief of Lyme symptoms.

 

Sometimes meditation is offered up as a cure-all for chronic illness. This is certainly not true, and occasionally dissuades people from trying it. In my experience, it hasn’t cured my Lyme disease, but the benefits have been remarkable.

Meditation became a part of my self-care routine during my ordeal to find a diagnosis. I was so anxious about not knowing what was going on in my body that I was having frequent panic attacks and couldn’t sleep.

The slow process of speculating about a cause, scheduling tests, and then waiting on the results was so stressful I couldn’t focus on anything else. To take my mind off the waiting game, my integrative doctor suggested a mindfulness-based stress reduction class.

On my first day, I walked into a room of about 10 people. I was surprised to see a group of average looking adults. We went around the room and shared with each other why we were taking the class. We all had different reasons for being there, health issues, stressful jobs, relationship problems, but the common theme was the same—anxiety was taking over our lives.

The class was an educational seminar run by a psychologist. He showed us a powerpoint presentation that taught us about the “fight or flight” reflex. This response of the autonomic nervous system is only supposed to activate when there is an immediate threat to our lives. However, in people with anxiety it’s turned on all the time. The problem for people with chronic illness is that when the fight or flight reflex is turned on, the immune system is turned off; therefore, the body is not able to heal. This was a huge wake up call for me. I knew I had to do everything I could to put my body in a healing state.

At the end of class, the psychologist led us through a guided meditation in which we visualized putting our racing thoughts on leaves as they passed by in a stream. It was the first time in months I felt like I could let my worries go.

Each week I went back and learned a little more about the nervous system, the brain, and mindfulness strategies to use throughout the day.

The psychologist provided us with a digital recording of a 10-minute meditation we could listen to between classes. Whenever my heartbeat would start to increase signaling an impending panic attack, I put on the meditation and tried to breathe through it. Occasionally, I had to listen to it twice, but it was always helpful.

A few times when I was talking to my husband, he could tell my thinking was spiraling downhill. He suggested I do the meditation and then we could resume our conversation. Once I’d taken a 10-minute pause from fear-based thinking, I was able to rationally discuss the situation and decide on the next step.

Meditation will not fix everything. I’ve heard some Lyme patients get annoyed because people encourage them to meditate as if it’s a quick fix to a complex, serious illness. Meditation will not cure fatigue, vitamin deficiencies or swollen joints, but it does help with some symptoms. Meditation has had the following benefits for me:

Calms the “fight or flight” reflex: Prior to practicing meditation, I spent all day and night in “fight or flight.” Meditation and mindfulness taught me how to use my inner voice to talk myself down from imagined threats.

Prevents emotional extremes: I used to go off on my husband and say mean and hurtful things. Eventually, I learned this was because of “Lyme rage,” a symptom of neurological Lyme. We tend to become very frustrated and then unleash on those we love. After regular meditation for about three months, I noticed I wasn’t losing my temper anymore. I still became frustrated but my emotions stayed in check.

Helps with sleep: Insomnia is one of the hallmark symptoms of Lyme. Before I started meditating I couldn’t fall asleep or stay asleep. In combination with a very detailed nighttime routine, meditation has taught my brain how to shut down and prepare for sleep. When I have difficulty falling asleep I turn on a guided sleep meditation and it usually does the trick.

Taught me how to breathe through pain: Meditation has not changed my level of pain, but it has helped me cope with it. Remaining in a relaxed state, even when dealing with high levels of pain has prevented my thoughts about the pain from making it worse. If I stay mindful, I’m able to think clearly about what I can do to minimize the pain.

My practice consists of sitting for a guided meditation for five to 20 minutes first thing in the morning, followed by a few yoga poses to loosen up my spine. There are smartphone apps and websites that offer guided-meditations or meditation music. I learned that if I don’t do it first thing in the morning I won’t do it at all. Now it’s a part of my daily self-care routine.

Meditation may not be right for you, but you can still practice mindfulness. Try to stay in the present moment while doing dishes, going on a walk, or reading a book. Every moment in the present is an opportunity for healing.

Read Kerry’s previous blog, “Chronic Fatigue or Feeling Tired?


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.

A Lymie’s View from 39

by Jennifer Crystal

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

 

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

That was before I lost a decade to illness.

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

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

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

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

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

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

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

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


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Determination Through Despair: A Lyme Warrior Speaks

by Susan Pogorzelski
#MyLymeLife

From one Lyme warrior to another.

 

I’d be lying if I said this wasn’t a difficult time. I’m still struggling to recover from this disease—the raw feelings surrounding this daily battle are documented regularly on my blogs and across social media. I’m still reaching out to Lyme patients and trying to find new ways to connect and provide emotional support and friendship to those who are suffering from this isolating illness. I’m still trying to grow my own business so I have some means of financial support, even though I’m only partially functioning and never have any consistency. I’m still trying to write my novels—my passion—in the rare moments when the fog in my mind clears. I refuse to let Lyme take that away from me, too.

But I’d be lying if I said it was easy to keep holding on.

There’s so much more to Lyme disease that most people can’t understand unless they’ve experienced it themselves. It’s not just the physical symptoms that make life impossible —it’s the emotional. It’s the financial. It’s the burden under which we’re forced to bend until we break. And boy, do we break. If anything, Lyme teaches us resilience. But how many times do we have to break down and build ourselves back up before it all becomes too much?

Sometimes this disease feels impossible. Too often, we walk in darkness.

I need to stop speaking in the abstract. That doesn’t help anyone. So here’s the truth of my Lyme disease: Even as I continue to get better, the bills add up. Medicine and doctor visits are all out of pocket and expensive—and that’s just for the oral antibiotics which I’m taking. I’m waiting to get a disability hearing, but that won’t be scheduled until 2018. In the meantime, I need some financial relief until I can go back to work without worrying that I’m either jeopardizing my health or that I won’t lose whatever job I do get because I have good health days, but they’re always followed by bad weeks.

I’m on government assistance. I’m relying on my family to get me through each month, placing an even bigger financial burden on them. Come August, if nothing changes, I’ll have to sell my house. In the meantime, I’m trying to build up my editing and writing business and do odd jobs so I’m able to earn some income. I’ve always believed in working hard for what you earn. But those jobs are hit or miss. It never feels like enough.

I try to be positive and live in gratitude because I have way more than some, and I recognize that. But every day is a struggle. Every single day. And the worst thing about it is that my story is all-too-common.

This is why I advocate so strongly for Lyme patients. Because we live in this hell for years and years, and if I can help prevent the suffering of just one person—if I can show them they’re not alone—then maybe I’m still here for a reason. Some days, though, it’s hard to tell.

I don’t mean to be so blunt. I don’t mean to sound so weary. But the truth is, I’m tired. I’m tired. I’m so damn tired.

I don’t like people to see this side of me—this side that’s depressed and anxious about her future, whose desperation screams so loudly, I begin to wonder if I even have one. I don’t like others to see this side of me because it’s not indicative of who I really am.

I’m the girl who is strong and brave and formidable in the face of adversity. I’m the girl who strives to help others rise in the face of their own battles, who offers hope in times of darkness because she believes hope can light the world. I’m the girl who faces obstacles with resilience and accepts challenges in stride, persisting despite resistance.

But sometimes I’m also this: Lonely. Scared. Defeated.

This week, I was the girl who sank so low into darkness, she didn’t think she’d ever find her way back out. I was the girl who lost her empathy and ability to cope, who pushed away loved ones, who lashed out at the hands that tried to help her rise from this dark corner. I was the girl who sank to the kitchen floor and curled up near the cabinets, sobbing because she couldn’t see a way forward, a way past this pain.

“I can’t do this. I can’t do this. I don’t want to do this anymore.”

How many times have I said those words? But I’m still here. I am still doing this. Because there is no choice. I can’t support others on this journey if I’m crumbling under the weight of my own.  So I’ve learned to keep picking myself up. I focus on the victories. I reassemble the pieces that fall apart. I fight to keep shedding light on the dark corners of the world even though my own world feels dark because the fire inside me refuses to go out.

I refuse to let it.

Little by little, the light I strive so hard to cast for others spreads to myself, and I bask in its glow for a while. I’m starting to learn how to do that, too. But it’s hard to keep that light there when this disease has shadowed you for so long. It’s hard to keep going when you don’t know where this ends.

All I can do is make a promise myself and to you. I’ll keep going. I’ll keep picking up the broken pieces. I’ll keep trying to shape them into something useful, something beautiful. I’ll keep casting light on all those dark corners of this disease. And I’ll keep trying to remember that I can walk in that light myself.

I promise I’ll keep fighting for you, for me, for us. I won’t stop.


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.

Fear of Lyme Reinfection

by Jennifer Crystal

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

 

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

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

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

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

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

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

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

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

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


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Lyme Moms: We Salute You

by Jennifer Crystal

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

 

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

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

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

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

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

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

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

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

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

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

We couldn’t do it without you!

Who is your #MyLymeHero?


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Loving Yourself Through Lyme Disease

by Susan Pogorzelski
#MyLymeLife

Living with Lyme disease can damage both your body and your soul. How do you take care of yourself, emotionally?

 

This May it will be five years since I was diagnosed with chronic Lyme disease and 20 years since I first started getting sick. Sometimes, I look at those numbers, look back on all the years, and I’m speechless. I don’t know how I’m still here, but I am. And I intend to stay.

Today my dad and I drove down to Maryland to see my new Lyme doctor. His wife also has Lyme and—like my first doctor who saved my life—I liked them immediately. He sat and listened to my story, asking questions about my symptoms and then examined me.

“How long have you had these stretch marks on your abdomen?” he asked.

“For as long as I’ve been fat,” I joked. Then I explained how I put the weight on—a lot and quickly—since I’ve had Lyme, and again when I relapsed.

“They’re going the wrong way for stretch marks,” he noted.

I looked at him, somewhat surprised. “Bartonella rash?” I asked.

“Bartonella rash,” he confirmed.

My body is what I’ve been the most insecure about since dealing with Lyme. When I was sick with mononucleosis in middle school I “blew up,” so to speak, gaining weight rapidly, unable to lose it. Eventually, when I was in high school, I did lose it all and rather quickly. I only wish now I had been more confident in who I was back then. Now, all these years later, I wish I could match what I feel on the inside—strong and brave and beautiful—with the outside, when all I see when I look in the mirror is someone who’s tired and weighed down by this disease.

Ah, but isn’t that just the way it goes?

Now that we’re able to recognize that bout of “mono” as my first brush with Lyme—now that I’ve experienced my second rapid weight gain—I’m starting to understand how this illness ravages the body and the mind. Stubborn weight gain is not unusual in that the bacteria damage the metabolism, thyroid, adrenals, and gut. It’s disheartening, truly. It feels like no matter what you do, it won’t make a difference.

Except it all makes a difference. I’m not going to lose the weight until I start getting better from this disease, I know that. But that means I need to reaffirm my dedication to my recovery—eradicating the infections with a new cocktail of antibiotics, reducing the inflammation with nutrient-rich foods and supplements so my organs start doing their jobs, and building my immune system strength so my body can learn to fight on its own again. It also means more patience on this journey, continued self-care.

I’m not doing anything wildly different as far as a treatment plan. Tweaks to the antibiotics, changes to the supplements, re-focusing on healthy foods, and exercising only as much as my stamina and the illness will allow. But once again I’m armed with renewed hope and determination. Once again, I’m ready to do what it takes to be healthy again.

Or, you know… For the first time.

This disease has been hell in so many more ways than one. It’s broken me time and time again, over and over. But it’s also forced me to face what I didn’t want to face, making me into someone I hope is better and bolder and stronger.

These past five years, I’ve spent so much time healing emotionally and spiritually. I’ve spent so much time trying to build back everything I’ve lost. I’ve spent so much time rediscovering who I want to be and learning to believe in and love who I already am inside.

Now it’s time to accept and love who I am outside. It’s time to accept and love my body for all it’s been through, to forgive myself for what it is right now.

Love is love
reflected inside and out.


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.


 

SUPPORT #TEAMGLA in TOUGH MUDDER

Dear Lyme Warrior … Help!

by Jennifer Crystal

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

 

Do you have a question for Jennifer? Email her at [email protected].

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

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

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

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

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

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

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

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

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

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

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

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


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]


 

 

 

Taking Lyme One Day-Minute-Second At A Time

by Jennifer Crystal

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

 

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

This maxim applies to Lyme disease, too.

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

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

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

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

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

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

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


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

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 [email protected]

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 [email protected]

Lyme Lies

by Susan Pogorzelski
#MyLymeLife

How does your illness speak to you?

 

There it is again—that voice in the back of my mind, growing louder, crushing my confidence and making me feel worse.“You’re sick,” it reminds me. “You’re always going to be sick.”

I could close my eyes, but I’d still hear that voice. It’s like a shadow I can’t shake off. It’s there when the fatigue overwhelms me, when I can barely lift my head from the pillow to glance at the clock and see that hours have passed, but I still can’t wake up. The voice is there when the pain moves through my legs, squeezing the muscles, hurting right down to the bone. It’s there when the heels of my feet burn, when my heart flutters to its own eccentric rhythm, when the fever spikes.

“You’ll never travel again like you want to,” it says. “You’ll never go back to work like you need to or have the writing career you dreamed of.”

It’s there, the voice reminding me of everything I’ve lost, the future I could have had.

“You’ll never be well enough. You’ll never be good enough.”

Then, it grows louder still, pulling me in deeper.

“You’re helpless, useless, hopeless…”

The words are familiar. I’ve heard them before in a voice that sounds like my own. They’re the refrain I repeated for nearly a year when I was first diagnosed with Lyme Disease, when it was hard to see past the hour, never mind the day, in which I suffered. I gave into that voice, listened to those words like they were lyrics to a song stuck on repeat.

They’re right, I thought on the days when I could stay awake only for minutes at a time. I was helpless, useless, hopeless…

For months, that voice taunted me, until the day I stayed awake a little longer, until the day the pain subsided just a fraction, until the day the fever broke. It wasn’t until I began to feel better, until I began to find some reprieve from the symptoms and suffering of this illness, that the voice that had sounded so much like my own began to sing a different song.

“Be patient, dear girl,” it kindly said. “You’re so much stronger than you feel right now.”

The day I discovered self-compassion in the face of this illness was the day I learned that Lyme lies.

It lies when it tells you you’ll never get better. It lies when it tells you you’ll never be independent again. It lies when it tells you you’re without purpose in the world.

It lies when it tells you this disease is all that you are.

You are more than this disease.

This week, my recovery has had a bit of a setback. Those familiar symptoms have returned, leaving both my body and spirit weakened, leaving room for that voice to return and whisper its tale of destruction. It’s easy to let go of the self-compassion I’ve cultivated—a type of self-care, even self-preservation, that’s been necessary for my emotional healing. It’s easy to listen to the voice that wants me to succumb, to remember all that I’ve lost instead of all that I still have. But I won’t.

Instead, I’m reminding myself that I’m more than my illness, more than the sum of this disease.

I’m more than the lies that Lyme likes to tell me.


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.

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 [email protected].


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 [email protected]

Groundhog Day: Casting a Shadow on Lyme Disease

by Jennifer Crystal

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

 

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

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

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

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

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

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

blog_JC_groundhog_lyme_quote

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

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

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

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

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

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


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

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.

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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.

What It’s Like to Have an Illness No One Believes In

by Kerry J. Heckman
#MyLymeLife

4 Lyme Bloggers Speak Out About Living with Lyme Disease

 

A doctor recently told me, “I don’t believe you have Lyme.”

It’s not the first time I’ve heard it and it probably won’t be the last. I was diagnosed with Lyme after ten years of being undiagnosed and misdiagnosed. I didn’t believe it either at first. It took two positive test results, a specialist’s reassurance, and hours of internet research to finally become convinced. Each time a new doctor questions me, I doubt myself all over again.

What’s it like to have an illness no one believes in? The experience is different for everyone and we are all at different stages in our illnesses. It’s still early in my experience, so I asked four other Lyme bloggers to weigh in.

Christina Kovacs of the blog Lady of Lyme says, “I believe that the ‘experts’ who spread the lie of chronic Lyme not being ‘real’ do know better, but choose to turn a blind eye.” Yet even after five years of living with this diagnosis, she still believes there is hope.

christina kovacs_lyme blogger“In early 2017 it is much more difficult to deny the existence of Lyme. Borrelia spirochetes have been found in brain tissue during post-mortem autopsies, and even fetal tissue of miscarried babies. The voices are growing, and the science is growing, which gives validity to the pain of every patient. On top of that, we have amazing senators and representatives, who along with patient advocates have passed laws to further advance Lyme disease treatment guidelines.

“But overall, when I am confronted with a non-believer (be it a Doctor, a nurse, or a layman), I find it only fuels me. That doubt just lights a fire under me to fight harder to enact change. I feel very lucky that celebrities have lent their voices to Lyme disease awareness, because it shines a broad light of legitimacy on the cause.”

Kami Lingren writes the Living Grace blog and she believes even when we are faced with adversity from the medical system it is important to be your own best advocate.

Kami Lingren_lyme blogger“Living with a disease that is misunderstood, even disbelieved, can be heavy. It takes strength to repeatedly stand up for yourself in conversations with doctors who belittle, laugh (yes, literally), and minimize your symptoms and diagnoses—all for the simple fact that they cannot see or understand what’s happening in your body. I now struggle to view hospitals or doctor’s offices as safe zones, because they usually produce more pain than help. It won’t matter how excruciating my pain is, how many symptoms are overwhelming my body, or how very real my struggle to breathe is. The response is consistently ‘you’re fine.’ One thing’s for certain, though: you learn to rise up and take care of your own health and to find doctors who will listen to you and understand your illness. Because we’ve also learned this: that life and time are too precious to wait complacently.”

Lyme warrior and blogger Victoria Faling touches on one of the biggest issues for Lyme patients— the fear of family, friends, and doctors thinking we are making it all up.

victoria faling_lyme blogger“The hardest part about having an illness that no one believes in is that people think you are exaggerating or acting a certain way to get attention. People you love and trust start to question you (whether it’s outright or in their own minds), which makes you trust and love them just a little less. It makes you not want to share with anyone and close yourself off, so you can just deal with your health in the safety of your locked room. The hardest part is trying to act as normal and healthy as possible around others as to not make them feel uncomfortable, which only makes you feel worse because the acting takes so much energy. Having an illness that no one believes in makes you want to scream from the tallest mountain, ‘Believe me! I’m sick! The pain is real!’ It makes you wish everyone around you had to deal with your symptoms for just one hour so that they can understand. But you can’t do those things and that’s hard to bottle up and contain. The hardest part is how incredibly angry and sad you feel; lonelier than you ever thought possible.”

With all the emotional pain, Victoria believes there is a silver lining, “But it also makes you realize who truly loves you no matter what, no matter if you actually are crazy, because they stick around through it all, listen to every complaint you have, and hug you whenever you need it, even if you don’t want it.”

Many Lyme patients would agree with April Moor of the blog Fitness Nutrition and Moor

april moor_lyme blogger“There are many obstacles and struggles when you are a person suffering from Lyme disease. One of the largest is that you have an illness that not many people actually believe in.”

She compares the difference between living with Lyme and living with other diseases that are more well-known. “There would be walks completed in your honor, scientists would spend endless hours researching a treatment, insurance would cover your doctor visits and medications, and people would ask how you are feeling for the entirety of your illness. With Lyme, there seems to be a limitation to how much people care. Because we don’t often look sick, people don’t ask how you are feeling, they don’t understand why you are always tired, and how about those harsh diets that we are on, they definitely don’t support that. Lyme disease is a lonely and helpless journey that only fellow ‘Lymies’ understand.”

After a year of following and communicating with Lyme patients like these bloggers, I can’t believe anyone would deny their pain, suffering, and resilience. Because of the willingness of these four women to share their stories, I’m finally learning to trust myself and my team. The doubts are getting softer and my voice is getting louder.

Keep speaking up for yourself, keep speaking out. Lyme is real and you deserve to be heard.


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.

 

The Double-Edged Sword of Boredom

by Jennifer Crystal

Are you bored of being bored? Pace yourself.

 

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

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

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

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

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

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

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

“Yes! How did you know?”

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

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

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

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

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

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


jennifer-crystalJennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]

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 [email protected].

 

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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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.

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.

Searching For Home When You’re Stuck in Lyme Land

by Jennifer Crystal

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

 

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

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

In her book Illness as Metaphor, Susan Sontag wrote,

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

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

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

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

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

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


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

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

By Jennifer Crystal

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

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

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

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

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

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

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

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

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

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

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

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


 

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