My Lyme Disease Journey – Told Through the Lens of Three Lyme Awareness Months
May 2016. May 2017. May 2018.
For the past three years, May has been not only another one of the 12 months, but the most intense and difficult month of the year, one that has carried with it a violent rush of emotions and events. I’ve decided to kick off this Lyme Awareness Month by telling my story through the lens of the past three Mays, my past three Lyme Awareness Months. Each of them so accurately and painfully encapsulates a stage in my Lyme journey.
I’ve been suffering for almost three years, progressively growing more ill and watching my body fail as I work so hard – to no avail – to stop its deterioration. It’s the pinnacle of the years of hell I’ve gone through, the absolute tip of the destruction of my body – the pain, the fatigue, the nausea, the cognitive and psychological damage, the deterioration of my memory and so much more. I’m still fighting for a diagnosis, traveling to dozens of doctors and undergoing hundreds of tests and receiving very few answers. After three years of research, my mom finally decides that she wants me to undergo advanced testing for Lyme in labs that specialize in Lyme and tick-borne diseases. My blood is sent all across the country, from Connecticut to California, and two weeks later, we receive an envelope that changes my life forever. I see a Lyme specialist on May 26th, and, nearly three years after it all began, I am diagnosed with chronic neurological Lyme disease and co-infections.
This appointment was the start of a journey I could not even begin to foresee. My diagnosis brought tremendous relief and even celebration in the immediate moment. I almost instantaneously erupt in tears of joy. After three years of suffering, there is finally hope for treatment, for relief. My tribulation has been legitimized. I can now begin the path to recovery.
It was unknown to me that this appointment was not the beginning of the end, but rather the beginning of a new beginning. I would soon drop to some of the lowest lows I had ever hit. I’d experience things no 18-year-old ever should. I’d have my youth whisked away from me in the blink of an eye, never to experience simple childish naiveté again.
Indeed, this all I could not foresee at this appointment. But I would soon come to experience it.
Following our initial celebration, intensive treatment quickly began. We had to attempt to reverse the three years of deterioration that the disease had caused – a nearly impossible feat. Before I could process it, a foreign new life of strict regimens and lack of control fell into my lap. I quickly went from not knowing how to swallow a pill to taking 20+ a day. I began a new diet that omitted nearly all of the foods I ate on a daily basis. I soon learned of the nasty side effects of the medications – the exhaustion and nausea and loss of appetite and weight loss/gain and pains. I was prodded weekly for blood tests to make sure that my liver wasn’t yet failing from the amount of medication we were pumping into it. I went from living a relatively carefree life of freedom in my schedule and daily happenings to one that was structured around my treatment regimen and the limitations the new side effects imposed.
It wouldn’t be long before we realized that the disease had progressed too far, and oral treatment was not enough.
It’s been exactly a year since I was diagnosed. So much has changed. My life has taken on a form I never imagined.
The ups and downs over the past year are more than I could have ever expected. After celebrating my initial diagnosis, the start of my treatment – with oral antibiotics – showed me that the journey would not be nearly as simple as I expected it to be. After several months, we add in weekly injections to supplement the oral treatment. After continuing to deteriorate despite my increasingly intensive regimen, we realized that the infection was too far along for the minimal amount of intervention we were pursuing.
In December, half a year post-diagnosis, I have a PICC line placed to begin my regular intravenous treatment. This undeniably marks the beginning of the most difficult part of my journey thus far.
For one, my illness is one I can no longer hide. There’s a catheter hanging out of my arm – it’s public, despite my desire to keep it private. This marks potentially the only positive aspect of my PICC line – the start of my advocacy and fundraising solely out of a lack of choice for keeping it to myself any longer.
But then there are all the negatives. While I thought that my oral regimen had taken away my freedom, my new phase of treatment changes – and limits – my life in more ways than I could ever imagine. My days are now structured around my two- to three-hour IV treatments every morning and every evening. I can no longer sleep in as every teenager desires to. My ability to travel, or even to sleep over at friend’s houses, is taken away. I lose nearly every shred of my independence as my mom becomes my 24/7 caretaker and everything begins to revolve around Abi’s treatment. The side effects I thought were bad from the orals are only worsened with the IVs. I lose whatever drop of energy I had left and my days center around medications, napping, medications.
This is all in December. By May 2017, I have finished senior year and missed over two-thirds of it, both school and social events. I am five months into my IV treatment and it has become my “new normal.” I can’t remember my life prior to my diagnosis and treatment; it has changed so fundamentally. I have learned how to shower with my PICC line, so much so that it’s weird to think of just easily being able to pop into the shower without first covering it to protect it from water. My mom no longer hovers around me 24/7. I now draw my own blood weekly instead of having to go to the lab. I’ve learned which detox remedies work best for me and what my body reacts best to to mitigate the side effects of my medications. I can now pop five pills (give or take one depending on size) at once (it’s the little things)!!!! I’ve found ways to cover my PICC line most effectively, so that it’s not the first thing new people notice. I can basically hook up to my IVs in my sleep. A lot of my new friends are ones I’ve met in Lyme support groups. I’m training my mind to attempt to strengthen the cognitive function that was weakened by the infection. I’ve learned which TV shows are best on the bad days. I’ve learned which activities are most important on the good days. I’ve identified what helps each symptom the most. I’ve come to terms with the daily fatigue and pain and have begun to structure my life around these limitations.
My new normal has been formed. I don’t realize it in this moment, but it later becomes clear that my life has become structured around my illness. I will never again live the carefree life I enjoyed prior to my diagnosis. What now feels normal to me is a fundamentally different lifestyle than the one I held before, a lifestyle that few other 18-year-olds have had to adapt to. Only a year after my diagnosis, my life is more different than I could have ever imagined. What is normal to me now – IVs and injections and pills and everything else – was foreign to me a year ago. How much can change in a year.
Almost as much has changed between May 2018 and 2017 as did between May 2017 and 2016.
I am now in Israel, nearing the end of a gap year that I never imagined myself being able to take. I am PICC-free, with only a small scar on my upper right arm to show for the hell I went through for 10 months. My “new normal” is over a year old already, not so new at all, and a very natural part of my life. I speak openly about Lyme to new people I meet – I speak about it with pride for what I’ve fought through, and a strong and powerful desire to raise awareness and effectuate change. I’ve finished two successful fundraisers already, raising a cumulative $10,000+ to donate to Lyme disease research.
But for all of the progress I’ve made, there are also painful daily reminders of how much more there is to fight. Unlike those of my friends here, my room is filled with pill bottles and injections; despite being in Israel, there is no way to escape the ongoing intensive treatment I must continue to undergo. My most frequently used email is that of my doctor’s. I structure my schedule around what is best for my fatigue and will allow me to function at my best capacity, not around what I want to learn the most.
But worst of all, any progress that I’ve made over the past year seems to have regressed. I’ve just spent a week away from my program at my aunt’s, too sick to be able to return. Nearly all of my original symptoms seem to have returned. My fatigue is so overbearing that I’m constantly dizzy and foggy and sometimes disoriented – it’s almost unfathomable how fatigue can have such incapacitating effects, such physical effects. All of the pains are back in full throttle. My insomnia is worse than ever before – I’ve tried four of the strongest sleep medications to no avail, and my doctor has said he has no other options for me at this point. I’ve re-started injections because of the drastic deterioration of my condition. I worry this isn’t only a flare, but a relapse. It has been weeks. There is nothing more disheartening than being on a high and then plummeting down. I’ve had a year of highs, a year of accomplishing things I never expected to. Of taking a gap year abroad. Of living away from my mom and taking my healthcare into my own hands – entirely. Of being an ocean away from my doctors. All of it is leaps and bounds beyond where I ever thought I’d be. But if there’s anything the past few weeks have shown me, it’s that no progress is permanent, no improvement irreversible. This is a lifelong battle I will never fully overcome. That’s a new “new normal” for me to come to terms with.
And that’s my story, told through the lens of three Mays. It’s nowhere near over, and next May will bring with it another chapter, hopefully a more positive one. But in the meantime, I continue to fight with the hope that others won’t have to. I will use this Lyme Awareness Month, as I attempt to use every other day of my life, to raise awareness, fight for recognition, attempt to raise money for funding and share my story. If there’s anything the past three Mays have taught me, it’s that as painful as my own journey has been, I can use it as a catalyst for change to save others. And if that’s something I’m able to do, then it makes most of it – not all of it, but most of it – worth it.