If you really want to understand, to become enlightened to the plight of a Lymie, you have to start with the exhaustive fight for a diagnosis. Learn the symptoms that overwhelm the days and take away our very ability to live. Realize that during every event, every accomplishment you achieved, as you, my friends, complete your first semester, took a spring break trip to the Caribbean, I was sitting here, lost in the storm of a broken body and fighting for the life I had.
Let me retrace my steps a little bit and take you back to the beginning of last September.
Labor Day weekend, I moved into my dorm at College of the Atlantic in Bar Harbor, Maine, eight hours from my home. The initial transition was difficult, as I had expected it to be. Adjusting to my new surroundings, setting my class schedule, making friends, was all underscored by inner emotional turmoil. Within 24 hours of arriving, I had already had a panic attack that left me curled up in a ball on a friend’s bed.
But there was something else too. It was like some heaviness that polluted the air around me, pressing down on my body and making everything that much harder. When I looked around me, everyone else seemed so much lighter, freer. In time, that lofty and indescribable feeling only grew and became more apparent, both to myself and others.
It was like an impending sense of doom. Every day I was waiting for the shoe to the drop, the catastrophe to befall me.
I was becoming slower, weaker, my body reacting to the stress. I felt like I was slightly removed from my life, watching instead of fully participating. Cotton fuzz was filling my head, I would stumble and weave like I was slightly drunk, my body craved sleep no matter how much rest I had the night before.
I started explaining away my symptoms, blaming it on gluten exposure or on the emotional homesickness I felt. Told myself I needed to just push through and that if I ignored it, faked it till I made it, then it would all turn out okay. (Since when has that ever worked?)
There was a virus going around campus and I did live in a house with 27 other people. But where it took others two days to get over it, my bout lasted two weeks.
Maybe it really was just a bug or maybe my body was trying to tell me something.
I kept trudging through the days, each one feeling like a week. But soon, even the bare minimum of activity was impossible.
I stopped leaving my dorm; friends were kind enough to bring me food from the dining hall, food I had no interest in eating. Twice I visited the emergency room, my condition blamed on dehydration and sent back to campus. My mom sent my dad to visit, someone to put eyes on me. He came bearing homecooked meals for me because maybe that would help.
When I started sleeping through my classes, letting course work pile up, I realized it was time to go home. Something was obviously wrong and currently I was not able to enjoy college to the degree I had hoped.
So, just nineteen days after moving in, I packed up the same belongings and said goodbye to my newly made friends, put in a request for a medical leave of absence and drove back home.
I have to pause here for a moment before closing the chapter on my college experience and mention the wonderful people at COA who were all so kind and helpful during this difficult time. Never did I feel rejected or unwelcome because of my struggle. The Dean of Student Life, Sarah Luke was such a support, even accompanying me to the emergency room once. I wouldn’t have had the security to make this decision without her or many of the friends I made.
I remember when I hugged one of my roommates goodbye, she told that I had such courage to make this decision. And perhaps I did. It takes extreme strength to choose you, to put yourself first.
There was a small honeymoon period when I was first home. Emotionally, it felt as if I was able to breathe for the first time in weeks. I resettled myself and prepared to regroup, decide what my next steps would be.
This time led my body into a false sense of security when, really, beneath the surface, the war was just about to start.
****
It all hit me in the Junior’s department of Kohl’s. One second I was browsing the clearance rack, the next it felt like my body was about to collapse. My brain was shaking inside my head, the floors were rocking beneath my feet, and suddenly I couldn’t stand anymore. The spell lasted a couple of seconds, paused, and then began again. And repeated. Over and over, my brain quaking, my knees buckling. It was like just stepping off the worst rollercoaster of my life.
In my dizzy stupor, I fled the store as quickly as possible. The fear and vulnerability I felt in that moment I have not forgotten and it remains a petrifying memory in this whole ordeal. And now I don’t think I will ever set foot in one of those stores again. It’s a shame. Their prices are good.
But it had to have just been a fluke, right? I blamed it on a weird migraine episode and tried to push it from my mind. If you had told me then that this feeling would persist, that I would spend all day, everyday, feeling like I had just gotten off a boat, that my vestibular system would be so compromise that I would be unable to stand in the shower or walk to bathroom, I wouldn’t have believed you.
But that would become my reality.
When my symptoms continued, I had bloodwork done and made an appointment with my general care doctor. The Western Blot was negative (3rd time!) so, in mainstream medicine, that meant no Lyme. I was directed instead to an ENT. Who then referred me to a neurologist.
Time for an MRI. Joy. Let’s just throw together two of the things I hate most: needles and enclosed spaces. The whole ordeal caused a scale busting level of anxiety and resulted in my mom holding my foot through the procedure. And for what? A clean scan.
All the while my days consisted of sitting on the couch, unable to read or write or sit upright or do much more than exist. I’ve logged more hours in front of the TV than anyone else I know.
Three weeks after the incident at Kohl’s, I ended up in the emergency room with an an unending episode of tachycardia. After a quick once over, the staff were prepared to send me home. I begged them not to send me away with no answers. I didn’t feel safe in my own body. With my mom on a cot beside me, I stayed overnight with an IV in my arm and a heart monitor strapped to my chest.
The next day came a string of doctors from each of the specialties: cardio, neuro, general. Each telling me that I was perfectly healthy. My bloodwork, clean. Ultrasound, clean. I felt like I was going crazy. And psych thought so too.
They listened to me as I sobbed my way through my story and begged for someone to fix me. They made it quite clear that in their clinical opinion my “physical ailments” were all in my head, that I had invented symptoms as a way to relieve my anxiety about leaving home and create a reason why I needed to come back. Psychiatric treatment was the answer.
I cannot describe the sadness and frustration I felt trying to find someone who would listen to me, believe me, help me.
So I left the hospital with fewer answers than when I had arrived, no better off than before.
My heart rate was still a point of concern, higher than it should be. To be safe, the cardiologist ordered a halter monitor for three weeks. This was a personal heart monitor stuck to my chest and worn at the waist 24/7. Needless to say, I hated the damn thing.
At this point, my grandmother came up from Florida to help take care of me. During the day she would sit with me on the couch, make my lunch, help me to the bathroom when I needed. The irony did not escape me that my 74 year old grandmother was the one pushing me through Whole Foods in a wheelchair.
There was no positive change for the next six weeks. My days continued to be as sedentary as before, my symptoms growing worse. Headaches that hurt so much I cried, devastating head fog (literally unable to think), muscles that felt like I had just finished a marathon. Despite my hatred of needles, I tried acupuncture, open to anything and everything that might give me my life back.
At the recommendation of the neurologist, I began physical therapy. I realize now that this was a stalled point in my story, a wrong move that seemed right at the time. The therapy only seemed to exacerbate my symptoms and, besides the biweekly sessions, I was stuck, sitting around while some unknown beast attacked my body.
It was with a meeting with my naturopath that the subject of Lyme was revived. At her persuasion, we began the research.
Fortunately or unfortunately, the area of the country I live in is the Lyme capitol, the place where the disease was born. This has since led to a cluster of LLMDs (Lyme-Literate Medical Doctors). The Infectious Disease Center deemed me “not sick enough” for their care (more on the fucked up medical system in a later post). Another doctor didn’t have an opening for two months.
Dr. Cameron was like the appearance of an angel at that point. I was able to book an appointment less than two weeks later.
For the first time, I felt like someone wholeheartedly believed me and was prepared to take me and my symptoms seriously. I told him about every headache, every dizzy spell. If you were to compare my symptom list to those of Lyme, you would realize they are practically identical. If it was this obvious to him, how had it been missed previously?
Dr. Cameron diagnosed me with Chronic Lyme and, later, Babesia and Bartonella, two coinfections. He ordered more blood work but for once, the results didn’t matter. I was started on doxycycline that night and for the first time in weeks, I felt like I was doing something that might help me and that there was a plan that went beyond flailing in the dark.
But I soon realized, though I might have a guide and a name to put to this beast, a diagnosis didn’t end my misery. I still had no choice but to slay the dragon and, to do so, the only path forward was through hell.
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