2018 began with an e-mail letting me know that the results of my Lyme test were in my patient portal.
I wouldn’t have my follow-up appointment with my doctor for another few weeks to let me know what to do about it, but there the results were. Positive. I hadn’t been mentally prepared for it, not really, even though my personal medical intuition-informed by literal years of reading about anything and everything related to my symptoms-had been honed to a sharp blade and I was rarely wrong anymore. I sought out a Lyme Literate doctor because by September of 2017 I was pretty damn sure. I wanted very much to be wrong. No one really believes in Lyme as a chronic illness. Tests are not the most accurate. The treatment is often not covered by insurance and treatment is physically hard on your body. The science is not 100% there…yet. And if I gave myself over to a treatment that amounted to nothing more than potentially hazardous snake oil? My credibility as the expert on my own body and competent caretaker of it would be shot through with doubt. I was not sure I would trust myself again if this went wrong, nor was I sure that other people would or could or should trust me on matters of my own illness. That was excruciating.
My husband and I talked about it a great deal. We talked with other people who had personally gone through diagnosis and treatment and had good results. I had a doctor who was insistent from the start that we would never overwhelm my body with more medication or supplements than I could take, that this was never going to be a miracle cure-I would always still have Lyme, it would just be an infection that was appropriately kept in check, that I had final say over what course of treatment I consented to-and that she would never pressure me into consenting to something I was wary of, that the goal was to get the infection (actually infections, as I have Babesia as well) in check and get me off of antibiotics and supplements sooner rather than later.
Do you know what it means for you to have faith in a doctor when so many failed to help you? There was only one doctor who was outrightly belligerent to me when I desperately needed help. Most of my overwhelming disappointment with doctors was that I would have a life-altering symptom, we would run the standard tests to see what the matter was, and when I walked away I would have a few negative tests results and a shrug. No information about how to control my symptoms. No clues as to what went wrong in the first place. Just shrugs. Doctors only spend every waking second trying to solve a mysterious diagnosis on TV shows. Most of my doctors were well-meaning but overworked, experts in difficult and widely known diseases I didn’t have that occupied most of their research time, and specialists who are dealing with different body symptoms who rarely consider that pelvic pain and hypoglycemia and hives and plantar fasciitis could possibly belong to the same systemic problem. I never gave myself over to unquestioning faith in my doctor, but I began to let myself have some faith in her.
I started treatment in late January 2018. I want to say I tapered off of the majority of my supplements and medicines by mid-March. The whole of February I spent the first half of every day in a haze, a fog so thick I mostly ate and sat and slept. I would take the kids to school, then take my medicine, then deal with the fog. By early afternoon it would lift. I would get the kids, complete the few tasks we needed completed to keep our world running and rest again. I recently looked back at pictures where I didn’t hide behind make-up. I looked grey. My face and lips and eyes looked like the color was drained away. I wore my softest clothes and binge-watched a lot of TV, something I’ve never really done being normally just a bit too restless for that. When I stopped the bulk of the serious medication, I kept on with maintenance supplements for a while. Many of my most problematic symptoms had faded away. Slowly I began working back up to my normal life (and my oldest broke an ankle just a few weeks after I stopped the bigger part of my treatment, so normal life wasn’t normal until about June). I still looked grey in early May. By one each afternoon I would fall into a dead sleep.
By July I realized that I passed out nearly in a dead faint after eating gluten at lunch, shaking with sudden chills, unable to stand upright. There is more to the story than that, but I’ve mostly told that story in an earlier blog post. Since August my youngest and I have been gluten-free. And my immune system seemed to come back on line. It sent my body for a loop. Suddenly immune-regulating medication I was on was dosed too high, and hormone replacement therapy I was on was dosed too high and I had skull-crushing headache verging on migraines for weeks at a time until I finally got the appropriate doses figured out just these last couple of weeks.
And I feel…good.
More often than not, I feel good.
I had given up on that ever being possible.
One thing that most helped me realize that I could trust that going into treatment was going to be the right thing to do? It’s that I had done a lot of work over the last several years to work through the grief of being sick and I had come to accept that my life-my smaller, less capable life-was absolutely still a valuable one. I really had accepted that feeling good might never be a possibility again, and I had made some amount of peace with that. But my heart-my heart was struggling to beat as quickly as it should have been. My heart was slowing down to dangerous levels. I had decided both that my disabled ill life was worth living and that it was in danger that needed to be addressed.
Lyme can infect your heart.
I wasn’t looking for a miracle cure, one that would let me climb Everest once treatment was done. I wasn’t in a desperate place grasping at straws, clinging to gold-plated hollow promises that I could be “fixed”.
I was looking to stay alive, because I loved the life I had in the middle of illness.
It was in that place where a leap of faith was possible and as measured as a leap can be. I knew what cardiologist I was going to approach if my heart rate didn’t recover or got even a little bit worse. I had an EKG through the local hospital that told me that my heart was strong but slow for some (to them) unknown reason. Now, about a year later, my heart rate stays within normal ranges for a person of my activity level. My heart is now beating in a way that makes it more likely that I’ll survive the next year, and the next.
This has been my 2018. I’ve done a million other things in the meantime, but from beginning to end it has been a year where I listened, figuratively and literally, to my heart. There were risks where I gained rewards I literally didn’t think were possible a year ago. There were risks that could have made this coming year a one of recovery from very bad failure. This isn’t prescriptive. If you don’t need to jump, maybe don’t? That leap can be very dangerous. Whatever your leap of faith is about, if you’re thinking about that leap, don’t go about it willy-nilly. Don’t jump with your eyes closed. Weigh everything. Research, examine your mental state, your motives, don’t jump out of a plane without checking your equipment five hundred times. Have contingency plans, and be cautious. But, if you’ve done all those things and you still find that the risk-whatever that may be- is worth it, I certainly can’t tell you to always play it perfectly safe. I didn’t. For once that worked out better than I dared hope.
Happy 2019 Everyone