Category Archives: Blog

Marisol Thomas: Existing with Late-State Neurological Lyme Disease

Below is Marisol Thomas’ Honoree speech given at the 2017 Global Lyme Alliance New York Gala on October 11, 2017, printed in full with her permission.

When the Global Lyme Alliance reached out to me to say they wanted to honor me, my first instinct was to say no.  Actually, my first instinct was to run and hide.

I’m not the usual success story that you hear about in these speeches.  I’m not at the end of my long journey.  I’m deeply in the midst of it. To be completely honest, I’m in pain right now, and I was actually so worried that I wouldn’t physically be able to make it here tonight.

I don’t like to lie. And when I was approached to be honored, I feared that by accepting it and standing up here in front of you all, it would be just that. A lie.

Even after I agreed to be a part of this amazing evening, I had second thoughts every day. I kept thinking that if everyone could see me on the days and days that I spend in debilitating pain unable to get out of bed, they would realize that I shouldn’t be here.

Marisol Thomas
Marisol speaking to the more than 700 people in attendance at the 2017 GLA New York Gala

Then, just after my husband and family had convinced me to do some interviews to talk about what I’ve gone through, things shifted. I started to hear from other voices.

Voices that sounded like me. Some who have been in this same struggle, fighting to hold on just one more day. Some that have lived in pain for so long, having no idea what’s happening to them, that they start to believe maybe they’re going crazy. People who have spent decades going to the best specialists around the world and still have no answers.

These people started to reach out to me, thanking me for sharing my ugly story because it either helped them finally start to look in the right direction or just to simply say that it felt good to know that they weren’t crazy and they weren’t alone.

I have late stage Neurological Lyme Borreliosis, Babesiosis, Bartonella, and a host of other coinfections. To make things even more challenging, I also have Hashimotos Thyroiditis, an autoimmune disease that was triggered by the Lyme infection, when it unbalanced my immune system sufficiently to trigger the autoimmune mechanism.

Living with these multiple diseases has quite literally stolen my life. I went from being a happy and fulfilled person to just existing. There isn’t a day or even a moment where I’m not in pain. Many days so excruciating that I lose track of the hours that have passed.

On the days where people see me out and about with a smile, they don’t realize that I’ve just learned to function at a level of pain that most people couldn’t imagine. Each day is about surviving somehow.

My Mom’s daily mantra and mine has become JSS. Just Survive Somehow. This disease has affected my family and all my relationships in such a huge way that it pains me to even talk about it.

As someone with late-stage neurological tick-borne disease, I have joined a club of people with a stigmatized illness.  One that many don’t understand or want to believe. And that many doctors don’t even want to treat.

Having this disease feels like Groundhog Day in constant pain. It feels like you’re standing still just existing, unable to participate, as the world continues without you.

With fellow Gala Honoree Joseph Abboud

It is extremely isolating and you feel completely alone, as no one, not even the people who love you most, can understand the pain you live in every minute of your life.

So sadly many times, along with struggling to survive, you also feel the need to defend yourself daily. Desperately hoping to be believed.

The heartbreaking truth is that you will lose people on this journey. Some who can’t believe that anyone can be that sick with so many different symptoms for so long. Some who just get tired of you canceling plans at the last minute. And some that just can’t understand why you don’t get dressed, go out and get over it.

The sad reality is that when people don’t understand something, most of the time they don’t believe it. Nobody can really understand unless they have gone through it.

Those who stay, who really love you, who really want to help and try hard to understand your situation, still can’t grasp what you’re feeling, and many days you’re left feeling isolated and lonely in spite of all their efforts.

This leaves us feeling a tremendous amount of guilt. I feel guilty for being sick. For letting the people I love so much down time after time.

I have no control over it, and it’s not my fault, and yet it crushes me. Because I know my illness affects everyone around me.

As grim as my current situation is, I am one of the lucky ones. I have doctors who are willing to provide open-ended treatment and stand by me, no matter how long or how many twists and turns this journey takes me on.

And I’m also blessed to have a great support system.

I have a core group of wonderful people that have literally saved my life. Even though they probably don’t really know it.

My closest friends, don’t realize that just by sending me a text letting me know they are thinking of me, and are there for me, can brighten my day even when I’m unable to respond.

Getting weekly pictures and videos of my beautiful nephew Gavin, who I don’t get to see as often I want, helps me still feel a part of his life.

My Mom and Dad who have sacrificed so much in their lives to make sure I got all the opportunities they never had. And now continue to sacrifice trips and dinners, just to make sure they are always here for me.

My dogs…my boys…which, if you know me, are my world. Whose unconditional love, give me a reason to get out of bed some mornings.

Marisol’s husband Rob Thomas performing with Chris Daughtry

And last but certainly not least, my husband, who is not only my best friend, but also literally my other half. No one will ever understand how much he has sacrificed in order to be with me all these years.

They have no idea that moments before he goes on stage in front of 15,000 people, that he was just on our bus, administering some medical therapy on me, that he learned and perfected better than most nurses I’ve ever met. Only to go and finish his show, jump off the stage, and come right back to help take care of me and our boys, who as luck would have it, are special needs as well.

His fans think he’s a wonderful person and they’re right. They just don’t know how right they are.

But I know that many people out there are not as blessed as I am to have this kind of love and support.

They are suffering in silence with nowhere and no one to turn to. I have cried learning how many suicides occur due to how unbearable life becomes for some and having no one believe them. They just want relief from their pain, and for someone to believe their story.  This is all any of us want.

So after struggling so much with accepting this honor, it is for all those people out there suffering and feeling alone and isolated, that I decided I must not only keep fighting, but also help bring awareness to this very real, very life threatening disease that is so stigmatized and misunderstood.

Connecting with fellow Lyme warrior Yolanda Hadid

It was my own feeling of isolation that led me to Yolanda’s book. I used to love to read so much. I was always buried in a book. But for the longest time it has physically hurt me to try to focus on the words on a page due to my visual disturbances, and sadly I just slowly stopped reading.

But I found a way to read her book from cover to cover. There was a sad irony in reading about someone else’s struggle while the simple act of reading itself put me in excruciating pain, but seeing someone else’s pain mirroring mine helped me to focus. And it was the first book I was able to read in over two years.

That’s when I realized what the word ALLIANCE in GLOBAL LYME ALLIANCE truly stood for.

For those of us who live with this disease that makes us feel so alone and isolated, to find a group of people who feel exactly the same way and still find a way to get up every day to continue to fight to get to other side, somehow gives you strength.

Sometimes having an alliance to support you is the difference between those of us that make it and the far too many who don’t.

So while I don’t feel much like someone who should be honored here tonight, I do feel that it’s an honor to be a part of this amazing alliance that is fighting tirelessly to give us a voice and help find a cure. So that others won’t ever have to suffer this way again.

So thank you for allowing me to be a part of something so much greater.


Watch Marisol’s Speech


Marisol’s speech moved the more than 700 people in attendance at GLA’s 2017 New York Gala–both patients and non-patients. For patients, they identified with Marisol’s moving and heartfelt words. For non-patients, they got a very real glimpse into living with Lyme disease, including dismissal by doctors, the daily struggle to exist, and the impact it takes on the patient’s circle of family and friends. Special thanks to Marisol Thomas for giving permission to Global Lyme Alliance to reprint her speech from GLA’s 2017 New York Gala. Mari, we honor and thank you.

Bursting the “Woods of New England” Bubble

by Jennifer Crystal

JENNIFER CRYSTAL ADDRESSES THE COMMON MYTH THAT LYME DISEASE ONLY EXISTS IN NEW ENGLAND.

 
Last summer, a friend who lives in Oklahoma found a classic bullseye rash on her seven-year-old daughter. “That’s a spider bite,” a local pediatrician told her. “We don’t have Lyme in Oklahoma.”

The doctor was wrong. Had my friend taken his advice, her daughter would not have been diagnosed in a timely fashion and she would likely have developed symptoms over the next few months or years. She probably would have become severely debilitated, and the infections might have crossed the blood-brain barrier and become chronic.

In other words, the little girl could have wound up like me. For as it turns out, she did not have a spider bite. She had Lyme disease and two co-infections, Babesia and Bartonella.

Now she’s a healthy, happy second grader because a Lyme Literate Medical Doctor (LLMD)  was brought in who accurately saw the bullseye rash for what it was. Another pediatrician ordered special tests, and started the child on proper medication for all three infections. Because they were caught early, those infections have now cleared up.

This little girl was lucky, but that’s because her mother was informed about Lyme and knew to persist beyond the “spider bite” diagnosis. But what about all those children whose parents and pediatricians aren’t Lyme literate? Especially those who live outside the so-called endemic areas?

I don’t believe the Oklahoma pediatrician meant harm with his inaccurate diagnosis. His lack of awareness stemmed from a common myth that Lyme only exists in New England, and specifically in the woods. I’ve had people in Massachusetts say to me, “Oh Lyme—that’s the thing you get when you’re hiking, right?”

Yes and no. Ticks live not only in the woods but also in long grasses, gardens, woodpiles, leaf litter and on lawns. They love any moist, shady area. They feed not just on deer—another common myth—but also on mice, chipmunks, shrews, birds, and other small mammals. Therefore, they travel a lot. People travel, too. Someone from South Carolina might take a vacation in Maine, get bitten by a tick, and later be told by their doctor, “It can’t be Lyme. We don’t have it in the South.” In fact, cases of Lyme disease have been documented across the United States, and throughout the world.

New research published in the Journal of Medical Entomology shows that infected ticks are now in half the counties across the country, a number that has almost doubled since a similar survey was done in 1998. The study notes that over the past two decades, the black-legged tick “has expanded from its northeastern focus northward into upstate New York, Vermont, New Hampshire, and northern Maine; westward across Pennsylvania, eastern Ohio, and New York; and south—and southwestward into West Virginia, Virginia, and North Carolina.” The study also notes a similar geographic expansion in the North-Central states. “The two previously distinct foci in the Northeast and North-Central states appear to be merging in the Ohio River Valley to form a single contiguous focus.”[1]

Ticks are spreading across the country, bringing not just Lyme but co-infections. These require different treatment and can complicate recovery. Had my friend’s daughter only been treated for Lyme and not for Babesia and Bartonella, she would still be sick.

Some of these co-infections are specific to states that are nowhere near New England. Bourbon virus, a rare but potentially deadly illness, has been reported in Kansas and Oklahoma. The Heartland virus, spread through the bite of an infected Lone Star tick, has been found in Missouri, Tennessee and Oklahoma. Also transmitted by the Lone Star tick is Southern Tick-Associated Rash Illness (STARI), while dog ticks and Rocky Mountain wood ticks carry Rocky Mountain Spotted Fever.

Tick borne illnesses are rampant not just in New England, not just deep in the woods, but all across the country and world. As the International Lyme and Associated Diseases Society states on its website, “ticks know no borders and respect no boundaries.”[2]

No matter where you live, if you have symptoms of Lyme and/or co-infections, it’s critical to see an LLMD. If you still have the tick, you can also get that tested. Follow the smart lead of my friend in Oklahoma, so you don’t wind up like me.

 


Opinions expressed by contributors are their own.

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

 

 

[1] Rebecca J. Eisen, Lars Eisen, Charles B. Beard; County-Scale Distribution of Ixodes scapularisand Ixodes pacificus (Acari: Ixodidae) in the Continental United States , Journal of Medical Entomology, Volume 53, Issue 2, 1 March 2016, Pages 349–386, https://doi.org/10.1093/jme/tjv237

[2] http://www.ilads.org/lyme/about-lyme.php

Chronic Lyme Disease Series: Chelsea’s Story

Reprinted with the permission of itslyme.com
#MyLymeLife

My Lyme disease story starts two years ago.

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

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

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

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

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

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

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

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

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

Chelsea’s Symptom Breakdown:

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

Recall tick bite/bullseye rash? No; possible rash

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

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

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


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

 

References

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

Podcast: In The Lymelight

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 and self-certified iced coffee sommelier Sarah Aiken: we hope you enjoy listening in as much as we enjoy talking.

In our very first episode of In The Lymelight, we talk about why we started this podcast, introduce ourselves and discuss the top ten things you should never say to someone with Lyme disease (does “you don’t look sick!” ring a bell?!).

 

 


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with us on Instagram at @alitmoresco and @saraiken.

The Dangers of Playing Doctor

by Jennifer Crystal

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

 

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

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

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

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

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

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

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

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

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

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


jennifer crystalOpinions expressed by contributors are their own.

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

Post Traumatic Growth: Reframing the Trauma of Chronic Illness

by Jennifer Crystal

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

 

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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


 

Opinions expressed by contributors are their own.

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

Should I Tell My Employer I Have Lyme Disease?

by Jennifer Crystal

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

 

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

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

“Why not?” he asked.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Opinions expressed by contributors are their own.

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

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.

Chronic Lyme Disease Series: Kelly’s Story

By Kelly Gibson

Reprinted with the permission of itslyme.com
#MyLymeLife

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

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

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

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

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

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

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

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

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

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

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

Kelly’s Symptom Breakdown:

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

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

Diagnosis before Lyme disease: Sodium Deficiency, Epstein Barr Virus

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

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

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

Preload