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marisol thomas

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.

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.

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.

lyme diet

Adjusting to a Lyme Diet

by Emily Croot
#MyLymeLife

Learning to Love What There is to Eat When You’re on a Lyme Diet

 

For anyone familiar with the Lyme diet, you will know that while it is a useful healing tool, it’s also incredibly restrictive and difficult to adopt. Most Lyme patients are usually told to reduce foods that cause inflammation and this means eliminating gluten, lowering carbohydrate intake and limiting or entirely stopping dairy and sugar.

When I first made the transition to the Lyme diet I was a new college freshmen. The day after the doctor prescribed the diet I remember walking into the dining hall and letting out a cross between a laugh, a groan and a sob. There was absolutely nothing there I could eat. Spaghetti? Nope, for it contained tomatoes and gluten. Tacos? No again, corn and cheese. A veggie burger perhaps? That contains beans and wheat. A simple sandwich then? Well, not one with either chicken or bread.

Sitting down to eat with my plate of lettuce and carrots I suddenly experienced a very strong desire to throttle my doctor. She said that making the transition might be difficult, but that eventually I would adjust. But this diet was impossible! When exactly is ‘eventually’ anyway? Would that be before or after I died of starvation? Two minutes later I stalked out of the dining hall and proceeded to down a pint of ice cream while watching Parks and Recreation followed by a 30 Rock marathon in my dorm.

This was not a good start to my new Lyme diet.

Although I had been a healthy eater before Lyme, starting at Phase 1 of the diet seemed less of an uphill battle and more a cliffside plunge. Gone were my precious black beans, tomatoes and bell peppers. Locked away were my bananas, yogurt and peanut butter. And I hadn’t even begun to mourn the loss of ice cream, chocolate, and cookies!

As my Lyme disease advanced, I was forced to medically withdraw from college and return home. Despite the setback, I continued to plug along with the doctor’s orders. Breakfast was the easiest meal, eggs and a smoothie, but I missed slathering jam over English muffins or sharing extra cheesy homemade corn grits with my mum.

Lunches and dinners were a nightmare of endurance. Although we had Recipes for Repair: A Lyme Disease Cookbook, my family and I longed for our old standbys. Almost every one of our old recipes had an inflammatory ingredient and most of my dinner preps would end with me letting loose a couple choice expletives (though this  exercise was not limited to the kitchen).

During one such meltdown my mother gently coaxed me out of the kitchen to the living room, promising she would take care of dinner. She made me a cup of tea and let me cool off before joining me. She had noticed my increasing frustration with the diet and, though she supported my efforts, she recognized it was doing more harm than good. My mum agreed that gluten, dairy and sugar needed to be reduced but she recognized we couldn’t handle going all the way to Phase 1 of the diet. Moreover, after consulting a second doctor, we concluded my case didn’t warrant Phase 1 and switched to my mother’s more sensible dietary plan.

The next day we went on a grocery store shopping spree followed by a raid of our library’s cookbook section. When we returned home with our arms full of books and shopping bags, we were ready to tackle some new recipes. Our kitchen was now stocked with berries of every color, a forest of leafy greens, a myriad of strange and exotic vegetables, nuts and seeds of every shape and size, and spices from around the world.

With my cast-iron skillet in hand and a renewed enthusiasm for cooking, we figuratively ate our way across the planet. One night, as I wiped my eyes from the stinging onions and pungent garlic, the lights from St. Peter’s Basilica twinkled outside my window. The next night we sat on a New England beach, the salty breeze stinging our eyes as we slurped seafood chowder (dairy-free and gluten-free naturally). In the mornings we inhaled the sweet air of the English countryside over a bowl of fresh oats, honey and blueberries. And so each meal brought us to a different corner of the globe.

The anti-inflammation diet had become less of a schlep for me through culinary purgatory and more of a gastronomic expedition around the world. Although  are still times when I slip up and sneak a fresh baguette or a wedge of extra sharp cheddar into the grocery cart, those times are rare and enjoyed on only very special occasions.

Since starting mum’s dietary transition, I have fewer bad days and can manage my symptoms more effectively. Now I hardly give my restrictions a second thought. Who cares that I can’t have pizza when there’s Moroccan-spiced salmon, chana masala, or delicata squash soup?

Bon Appétit!


Opinions expressed by contributors are their own.

Emily Croot is a student, writer, and cook splitting her time between New Hampshire and Union College in New York. She wants to help others and change her little corner of the world one person at a time. 

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.

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.

The Pursuit of Answers: What My Doctors Said

by Susan Pogorzelski
#MyLymeLife

What was the path to your Lyme diagnosis?

 

I’m in middle school the first time it happens. I’m 13, I think. Possibly younger. We’ve just returned from a school camping trip where I’d proudly proclaimed I was a nature girl after climbing up muddy embankments and hiking along trails lined with maple trees. I fall ill quickly with a fatigue that won’t abate and a fever that sends me directly to the doctor. The diagnosis: mononucleosis.

“I don’t understand,” I say to my mom. “Is this really what mono’s supposed to feel like?”

I get the nagging feeling that something isn’t right. But I’m 13. Possibly younger. What do I know?

* * *

I’m sitting in the living room with my parents a year later, watching a comedy rerun on TV. My chest feels inexplicably heavy. I inhale slowly, but my breathing feels too shallow. I take another breath, then another, and one more. It’s not enough.

My mom glances over at me and asks what’s wrong, but I shake my head, unable to speak. I’m sucking in mouthfuls of air, but it’s like the more I try to breathe, the shallower my breath becomes. My parents are alarmed. My mom instructs me to blow into a paper bag, but the air tastes tainted. I need fresh air, I tell them, but even outside, there doesn’t seem to be enough oxygen in the world. I’m weak. I’m pale. They usher me into the car and drive me to the ER. Tests are run on my heart and my lungs. Finally a doctor comes in to see me.

“You had a panic attack,” she says matter-of-factly. She makes a note of anxiety and depression in my chart and instructs me to follow up with my primary care physician.

It’s a diagnosis that will haunt me for years.

* * *

I’m a senior in high school, and although my original breathing issues abated within months, the panic attacks are real now. Dread rests in the pit of my stomach while an irrational fear runs through my body. I’m afraid to leave my house, afraid to leave my family, afraid, afraid, afraid…

It’s five in the morning, and I hear my dad getting ready to leave for work. In the darkness of the early hour, I’m gripped by a fear for which there are no words. I jump out of bed and race down the hall in uncontrollable sobs, begging him not to go to work, like I’m still a child afraid of being separated for even a few minutes.

“What’s wrong?” my parents ask, but I don’t know. I don’t know… All I know is fear has taken hold of me and won’t let go.

I spend my senior year trying to build up the courage to go to school. Once I’m there, I’m fine—happy and successful, even, with good grades, great friends, and leadership roles. But it’s the mornings that are the worst. I make it to the end of the driveway before I find myself running back inside. I drive a few blocks out of my neighborhood before I have to turn back around. I have a special excuse from class so I can sit in the courtyard and calm myself in the fresh air when that familiar fear grips me, and once or twice, I think about running all the way home instead.

It’s like something inside of me is telling me that home is the safest place there is, and if I’m home, then maybe I can cocoon my family there, too.

“Anxiety attacks,” my doctor says.

Now I’m seeing a psychiatrist who is talking about how getting ready to leave home for college and all the change that comes with growing up is triggering this disorder.

It makes sense. So I believe him.

* * *

I’m 24 and being scolded at my job for needing to take too many sick days.

“Well, what did the doctor say?” my colleague asks.

“Just another virus,” I say.

* * *

I’m 28 years old and in tears from the pain that’s shooting across my upper abdomen.

“It’s just a virus,” my general practitioner says, echoing an old refrain.

At my insistence, we schedule a never-ending parade of tests that I wouldn’t want if I had a choice and they don’t think I need except for the fact that the pain is persisting and only getting worse. I’m groggy after an endoscopy. My gastroenterologist proclaims nothing showed up as irregular on the test. Then he pats me on the shoulder and smiles.

“Just a sensitive stomach,” he says.

A few months later, they’re removing an infected gallbladder.

* * *

I’m 29 years old and dying. I know this. My parents know this. It’s been four months since my gallbladder surgery, and I’m so weak, I can’t walk. My brain feels so broken, I can barely talk. Burning sensations shoot through my legs. Words don’t make sense, and I can’t recognize my best friend even when she’s standing right in front of me. My face is ashen. The light in my eyes has gone out. I’m a shell of my former self.

My parents are determined to help me. We go to one of the top teaching hospitals in the country.

“Migraines and a vitamin deficiency,” the doctor says when my scans come back clear.

I cry.

I dry my tears.

I resolve to save my own life.

* * *

I’m sitting in a doctor’s office 200 miles from home. It’s six months after my gallbladder surgery and two months since my last hospital visit. This is my final hope.

I think about all the research I’ve done—all the studies I’ve read, all the patient testimonies I’ve reviewed. My suspicions—the very reason I’m here—is the only thing that explains the years and years of symptoms and this sudden decline in health. I see the look in my parents’ eyes, see the question that’s hidden there as my doctor reviews my history and labs—will he save my life?

“You have Lyme disease,” he confirms. “Without a doubt.”

I begin to cry, relief flooding through me.

Yes, he will.

* * *

I’m 33 years old today. In a few short months, I’ll be 34. I get to see 34 because after all these years and all this suffering, someone took the time to learn. They took the time to listen. For the first time, I’m not dismissed with a wave of the hand or a pat on the shoulder. For the first time, someone is looking at me as a human being instead of a compilation of conflicting symptoms.

I’m here because we fought to save my life together.

 * * *

Sometimes I look back on all those years and doctors, and I’m stunned by the flippancy with which I was treated. Yet I know even my experiences are tame in comparison to what I’ve heard from other Lyme patients. I remember a time when yet another doctor scolded me for looking up my symptoms on the internet, for not trusting him to do his job. But it was only by trusting myself that there was something more going on here, that there was some complex piece to this health puzzle that had yet to be resolved, that I ended up saving my life.

Over the years, I’ve learned to become my own health advocate, to speak up when a diagnosis or treatment doesn’t seem right. I’m formidable. I ask question after question and demand the reply. As Lyme patients, we don’t have a choice. While the medical community is slowly learning thanks to increased awareness, many patients continue to fall through the cracks, misdiagnosed with Band-Aids placed on aggravating symptoms, concerns dismissed with a flippant wave of the hand or those few damning words: “It’s just a virus.”

There’s one thing I know for certain now, after all this time: We are worthy of answers.


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.

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.

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.

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.

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.


 

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When We Build Cathedrals

by Susan Pogorzelski
#MyLymeLife

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

 

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

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

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

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

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

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

But I’m tired now.

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

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

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

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

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

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

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

There’s a purpose for us yet.


Opinions expressed by contributors are their own.

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

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.

Why You Should Never Make Fun of a Restricted Diet

by Kerry Heckman
#MyLymeLife

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

Being Lyme Brave

by Susan Pogorzelski
#MyLymeLife

When you’re finally diagnosed with Lyme disease there’s a feeling of hope. That hope can turn to pain and desperation as new treatments induce Herxheimer reactions.

 

“Does she have Lyme disease?” I remember my dad asking as he, my mom and I sat in the tiny exam room of a small brick house three hours from home.

My face was ashen. All I wanted at the moment was to layer my legs with wet paper towels to keep them from burning; all I needed was a few minutes of sleep, even if it meant curling up on the crinkling paper of the exam table. My ears were buzzing and my heart was racing, but I gathered what little energy I had to turn to my new doctor, silently begging for some confirmation of our suspicions.

“Oh, yes,” he replied. “And at least one of the co-infections.” He reached for a paper outlining my new treatment plan while my parents and I exchanged relieved smiles. Tears welled in my mom’s eyes; I could see the weight visibly lift from my dad’s shoulders. At last, we had answers. At last, I could start on the road to recovery.

“It’s not going to be an easy journey,” my doctor warned gently. “You’re going to feel worse before you get better.”

I nodded and listened as he explained what he meant, but I didn’t care. All I could hear were those words: “You’re going to get better, you’re going to get better.”

* * *

I should have listened to my doctor. Or at least, tried to understand what he was telling me. But I was so eager to start medication, so eager to get betterto get my life backI didn’t care to consider what he meant by “worse.”

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I’d learned all about the Jarisch-Herxheimer reaction—where the Lyme bacteria release toxins during die-off that cause an inflammatory response, worsening symptoms—during my initial research of Lyme disease. But I didn’t fully realize what that meant.

The herx reactions started almost immediately after I began my cocktail of antibiotics. Where before the fatigue made it impossible to exert energy for long, now I was sleeping 18 hours or more a day, too tired to even lift my head from the pillow. Where the joint pain and muscle aches in my legs were once barely tolerable, now I woke up crying in the middle of the night, clinging to the walls as I made my way to the Epsom salt bath because I could barely walk. Where the physical sensations were unbearable, the neurological and psychological symptoms became tortuous.

My memory seemed to float away like dandelion seeds on the wind. I couldn’t remember the words for postage stamps (“that thing you put on envelopes”) or doorknobs (“you know, that thing you use to open a door”). When I saw my best friend in the grocery store parking lot, I thought she looked vaguely familiar, but I couldn’t remember her name, never mind what she meant to me. When I read, large passages of text blurred into blocks of letters that didn’t make sense, like a foreign language I’d never learned; I remembered what a stop sign meant only after I was through the (thankfully deserted) intersection.

It only worsened.

Depression turned to desperation. Anxiety became paranoia.

I was afraid to fall asleep, the nightmares becoming so vivid. I couldn’t tell the difference between what was real and what was just a dream, and I spent half the morning trying to calm my racing heart and remind myself that I was real and the rest was only a figment of my imagination. Anxiety poured into my waking life. On the rare day I was able to make it into work, I stood huddled in a corner of the elevator, frozen by inexplicable, irrational fear when a kindly-looking man stepped in after me. At night, every creak and groan of the house sent me into a panic. I had my dog, who’s always been quick to alert me whenever someone so much as passes on the other side of the street, but there wasn’t anything he could do to dispel the fear that paralyzed me.

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The knowledge that another unavoidable herx cycle was just over the horizon kept me suspended in anxiety. As the days and weeks passed, I kept reminding myself that I was killing the germs, that I was, in fact, getting better. It was cold comfort, but I was grasping for comfort wherever I could.

For six months, I fought through the deluge of symptoms each herx brought on. I tried to calm my mind through meditation and distractions. I took Epsom salt baths twice a day, and I altered my diet according to the best detox methods. Eventually, the pain began to ease and the fatigue let up. Slowly, words returnedthere when I called for them—and though the nightmares lingered when I woke in the morning, I knew they were just fading dreams.

* * *

It took six months for those heavy herx reactions to abate. Even now, nearly five years and one relapse later, it’s hard to think about how I ever got through those days. When I relapsed, that same fear plagued me once again. I wondered if it would be that bad again, wondered if I could survive it a second time.

It was. And I did.

My herxes now seem mild in comparison: a few days recovering in bed, some muscle aches that are soothed with baths, words that still don’t come easily but aren’t lost completely. I recognize it now as the price to pay for eradicating the germs from the body—germs that desperately try to cling to their host with everything they’ve got, the herxes serving as one last moment of triumph, begging us to give up and give in.

We’re stronger than that. We’re stronger than the Lyme.

Looking back at what I went through those first six months, I’m reminded how brave we are for enduring such affliction, with only the scant knowledge that we’re getting better despite the pain to keep us going.

“It’s not going to be an easy journey,” I can still hear my doctor saying.

No. But we’ll be braver for it.


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.

 

What to Do When You Get Bad News About Your Health

by Kerry J. Heckman
#MyLymeLife

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

 

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

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

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

Here is some advice on how to respond:

1. Cry

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

2. Talk to someone

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

3. Don’t let the test results define you

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

4. Get a second opinion

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

5. Write down an action plan

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

6. One step at a time

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

7. Ask for help

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

8. Look for a reason

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

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

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

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


Opinions expressed by contributors are their own.

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

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.

Night Sweats & Lyme

by Anthony Brandt
#MyLymeLife

The real estate ads never mentioned the deer. Thanks to a very smelly mix of chemicals we can still grow hosta, their favorite food, but the chemicals have to go on after every rain, and we now buy shrubs and other perennials according to whether the deer like them or not. But you can’t, in the end, spray everything. And the deer like our yard regardless. We drive up our driveway at night sometimes and there they stand, in the back yard by the hedge, four or five of them, just hanging out, staring in that startled deerly way—what are you doing here?—and we get out of the car and yell at them, or growl like very angry wolves, and they climb through the hedge and disappear.

But they have left ticks behind, you can be sure of that. I read somewhere that the average deer has something like 400 deer ticks living on each ear. Each ear? One of them is bound to get you.

I do my own gardening and one got me some years ago. I noticed what seemed to be a bite on my right knee but no bull’s-eye rash, which is supposed to be the marker for Lyme disease, and no tick either. So I ignored it. Big mistake. After a couple of days a redness did appear and, because Lyme disease is well-known in the Hamptons, on eastern Long Island, where we live, I made an appointment with my dermatologist, who I knew to be an expert on Lyme disease, and he explained that he couldn’t be sure, but it was best to be safe. This was a man who had saved my life by identifying a mole on my arm as a melanoma and taking if off at a stage where it was minimally dangerous. So two days later I was on doxycycline.

Too late. One day later I was sick in bed, feeling achy and stiff and weak, not interested in eating, like having the flu without the sneezing and coughing and runny nose. Then I went to sleep.

Do you know what night sweats are? I didn’t, but now I do. You wake up soaking wet. SOAKING. It’s as if you just stepped out of the ocean, you are wet head to toe, and the bed around you is equally wet and you wonder whether there’s a hole in the roof and it just rained on you. And this happens night after night. You think, this is what malaria must be like. Yet you don’t feel feverish, although you must be, it’s not like chills and fever. It is the thing I remember best about the whole experience.

In the end, the antibiotic did its job. I got better, and there has been no recurrence. I count myself lucky. I know people out here in the Hamptons who have had Lyme disease four or five times, and a few who have had it so severely that the damage it did is more or less permanent. On nearby Shelter Island, where deer are especially abundant, a large proportion of the population—I don’t have exact figures—have had it more than once. I’ve been bitten by ticks since, but I’m vigilant. If you find the tick on your body you go to any local doctor and get a prophylactic dose of doxycycline and take it right away.

We have programs out here now to deal with the deer. Some local towns hire hunting professionals to thin the population. The deer lovers, and there are many, object to the hunters and set up chemical rubs on posts where the deer come to feed on food laid down to attract them, and the deer rub against the posts. Some communities have expensive deer sterilization programs. Deer are a definite issue in the Hamptons.

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None of these programs, unfortunately, works very well. Nor are the antibiotics foolproof. If you live in an area where Lyme disease is not that common, your doctor may not be well versed in the ways of the disease and be reluctant to treat it. Some doctors rely on blood tests to see if it is Lyme disease, but they are often inaccurate. When the antibiotics are used too late, the disease can become chronic, and the symptoms persist for months or even years. I know of one person who spent six months in a hospital on an antibiotic drip before being cured.  I know of another who, after multiple infections, has never been cured.

My own solution would be to return mountain lions to the area. It sounds drastic, and it would be hard on the local cats and dogs, but deer no longer have natural predators in the East, and the population has soared. People are amazed to discover that there are more deer in North America today–more than 24 million–than there were in 1620, when the Pilgrims arrived. They are responsible for hundreds of deaths in automobile accidents every year; indeed, driving at night out here has become increasingly dangerous. My wife and I have had deer run in front of our car, bang into it from the side, and otherwise scare the hell out of us.

And they carry around an enormous number of ticks, which not only give people Lyme disease but Rocky Mountain spotted fever, babesiosis, and twelve other diseases. Mountain lions are not out of the question, to my mind.

But then I’ve had night sweats. I’ve worried about dealing with severe joint pain the rest of my life, which is one thing Lyme disease can cause. Before Lyme was first diagnosed, indeed, there used to be something called Montauk knee, a chronic pain in the knees that affected residents of Montauk in particular, where the deer population has always been high. Where there are deer, there are ticks. Once, on Martha’s Vineyard, my wife and I took a walk into the dunes there and came out with 20 or 30 ticks apiece crawling up our legs. We stripped to our undies on the spot to pick them off our bodies. My dermatologist talks about ticks as walking sewers. I sometimes think, suppose they had wings, like mosquitoes?

I garden on summer weekends, and then I check myself for ticks. I don’t want to have Lyme disease ever again. I took one off my knee–they seem to like my knees–this last June, and then took the prophylactic dose of doxycycline. It worked, I didn’t get Lyme disease. But I know I’ll get bitten again. I read somewhere that scientists have run experiments with ticks where they’ve placed them on blades of grass and the ticks have spent as much as a year on them without moving, waiting for an animal to come along and become their host. I have personally seen them in just that situation, one half of them clinging to the grass, the other half grasping the air, waiting for me, or some other host to come along.

Mountain lions. Coyotes. Whatever it takes. I should be able to walk across my own back yard without being afraid of getting deathly ill, don’t you think? Is that too much to ask?


Opinions expressed by contributors are their own.

anthony-brandtAnthony Brandt is the editor of National Geographic’s Adventure Travel series of books and the author of articles in numerous national magazines including The Atlantic, GQ, and Esquire.

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.

The High Cost of Telling Someone ‘You Don’t Look Sick’

by Kerry J. Heckman
#MyLymeLife

I remember the first time someone told me, “You don’t look sick.” I was sitting in urgent care and the doctor told me I had a rare infection in my spine after seven months of being passed from doctor to doctor with no diagnosis.

 

“No wonder they missed this. You don’t look sick, you’re so calm and composed.”

Little did she know the internal turmoil that had been going on in my head. I thought I was slowly dying, and that I would die before anyone could figure out what was wrong with me. One of my legs had blown up like a balloon, my inflammatory markers kept crawling higher and higher, and the pain had gotten so bad I felt like I was being stabbed in my side. But I guess I didn’t look sick.

On the final episode of The Oprah Winfrey Show in 2011, Oprah famously said, “I’ve talked to nearly 30,000 people on this show and all 30,000 had one thing in common—they all wanted validation. They want to know do you hear me? Do you see me? Does what I say mean anything to you?”

Lyme disease is the ultimate “invisible illness,” a name given to diseases you can’t see. Not only do many of us look normal, but our illness is not recognized by conventional medicine. We are told our symptoms are “all in our head,” or that we are “faking it.” The CDC and IDSA say our illness doesn’t even exist, referring only to Post-Treatment Lyme Disease Syndrome, as opposed to chronic Lyme disease, which according to the CDC website “almost always gets better with time.”

Funding for Lyme disease prevention, research and treatment is minimal. Compare the $25 million in Federal funding for Lyme disease to the $42 million in spending for West Nile virus. West Nile is a terrible illness. However, when you compare its 662 total cases in the United States to the more than 300,000 people who contract Lyme disease in the U.S. every year, it’s clear that our health and safety doesn’t seem to be much of a priority.

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The second time I was told I didn’t look sick was ten months later. The cause of the infection continued to elude the top doctors in Illinois, and I was left with no viable treatment options. For a while, I’d been seeing a therapist, who specialized in health issues, to help me cope with the crippling anxiety of being undiagnosed. After working with an integrative medicine doctor and doing research on my own, I suspected Lyme disease. I explained my suspicions to my therapist and she said, “People with Lyme disease are really sick.” I wondered what impression I’d been giving her. I knew I felt really sick; apparently I still didn’t look it.

It turns out it was Lyme disease and multiple co-infections. Once I had a name for it, I thought everything would be different. I thought doctors would finally take me seriously, no matter what I looked like. Then, I started learning more and more about the controversy behind chronic Lyme disease diagnosis and treatment. I knew what I had, but no one in the medical community would give me any validation.

The third time I was told I didn’t look sick was more recent. I was back in the hospital awaiting a third biopsy on my spine, and a young resident told me, “You are the healthiest person we’ve seen all day.” I felt like she was looking right through me.

I didn’t go to medical school, so I don’t know how doctors are taught to analyze physical appearance, but I know enough people with chronic health conditions to know you can’t always see the chaos that is happening inside the body. At a time when chronic and invisible illnesses are being diagnosed at epidemic rates, we might want to stop looking at outside appearance to determine how sick someone is or how much help they may need. It seems like a dangerous way to assess and diagnose, which may lead to missing something or minimizing a serious issue.

The misconceptions aren’t limited to the doctor’s office. At times, family and friends disregard Lyme patients, because they can’t see our pain or fatigue. It’s human nature to judge a person’s health based on appearance. If you look fine, you must be fine, right? We are expected to work, do chores, be social, and help out just like anyone else. Things you would never ask of someone in a full body cast or with a gaping wound. For that reason, we have to constantly come up with excuses as to why we can’t do something, and feel the need to justify what we have is real.

Like Oprah said, we all want validation.

What is the cost of telling someone, “You don’t look sick”? It’s not what you say, it’s what the person hears. Every time someone said those words to me, I heard, “I don’t hear you, I don’t see you, and what you say doesn’t mean anything to me.” And that is what truly makes people feel invisible.

#MyLymeLife


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.