Los Angeles, CA
Current health: “My blood panels today are still out of whack and I am currently taking 19 different medications and compounds to fight all of the years of damage and inflammation built up in my body. But the word I would use to describe my emotional state post-diagnosis is: vindicated. I am grateful to finally have an all-encompassing diagnosis for my various ailments.”
Lyme…where do I even begin? For the past 5 years, I have been struggling with every aspect of my mental and physical health. Fatigue? Check. Debilitating migraines? Check. Inexplicable muscle and skeletal aching? Check, check. Brain fog, anxiety, dizziness, panic attacks in the middle of the night…you name it, I’ve been dealing with it. My name is Milena and this is my Lyme story.
People who know me would agree that I have always been an incredibly active person, deeply involved in and engaged with my community. Growing up, I did not spend lots of free time with friends because, well I didn’t have any. I have always maintained a full schedule—most hours out of school in my youth and adolescence were spent trying to master a hobby or learn something new—and I liked it that way.
Even today, I sit on the Board of Directors of my former ballet company, I compete in and coach young women for beauty and scholarship pageants, and I love dancing and live music. Camping and traveling are among my favorite things to do and I am so lucky to say that I have been to so many incredible places around the world.
Somewhere along my travels though (and I have no idea where or exactly when, like so many other Lyme patients), I was bitten by a tick, after which I contracted Lyme disease. My health didn’t decline right at the onset of my illness, but gradually, I did feel it start to wane until most of my waking hours became unbearable.
First, my thyroid started to underperform. Then, I started getting strange new food allergies and sensitivities. Next came the migraines, brain fog, confusion, and physical exhaustion. I still don’t know if all of these symptoms were caused by Lyme, but they are concurrent with my “Lyme timeline.” It was overwhelming and confusing. I started to wonder: “How can a person be in good health one day and basically falling apart the next?” Over months of what felt like endless tests, blood work, scans, and medical appointments, I resigned myself to believe—on the advice of my doctors—that a simple regimen of thyroid replacement therapy (Synthroid) and migraine-controlling medications (first Topomax with Imitrex, then Lexapro when my memory got worse) would solve all my problems.
Needless to say, it didn’t.
My symptoms became so severe that I had to stop working, regroup, and switch professions entirely. Because of my illness, I needed a more flexible work structure, but also found that my all but diminished short-term memory and cognition no longer allowed me to be effective in the incredibly demanding field of commercial fine art. I would write an email one minute, only to forget what I just did. I tried using checklists to stay on-task, but that didn’t help because I would forget to use them or become confused on how and what to prioritize. I was a salaried zombie and I knew things had to change.
Even in a new sector with a new career path I found little relief and what’s worse is that my health continued to decline even further. By further, I mean that the simplest of tasks like: getting out of bed in the morning would take me 2 hours. I found I could no longer wake up before 9AM on a very good day or 1PM on a bad day, regardless of the amount of sleep I had the night before. Light exercise felt, and on some days still does feel, like such a monumental challenge.
There were days when I was so sick and tired of being sick and tired that I would just burst out in tears, praying for some kind of release.
I blamed myself for my exhaustion, thinking, “If I become more disciplined, like I used to be, I won’t feel this way anymore,” or “I can push through this fatigue, other people have it so much worse and manage every single day.” People close to me tried to be encouraging and help me in every way they could. But if I am being honest, their attempts at helping me just made me sad and bitter—no one understood that my fatigue was not a result of me simply being lazy. I felt misunderstood, betrayed by my own body, and I even started to resent those around me who insisted that if I just ‘pushed myself harder’ or ‘asserted myself more,’ that I would be fine (I am not proud of that last fact, but it is absolutely the truth).
Through all of this, I felt none of the doctors I was seeing at the time were really listening. Their suggestions were to simply up the dosages of the medications I was already taking, even though those provided no relief. On the outside, I’m sure that I seemed ‘fine’ because I bottled so many of these emotions up.
Over these past five years, every day that I woke up I felt a little sliver of myself being whittled away and stolen by an unidentifiable illness. I was living in a body no longer my own, one ravaged by Lyme.
My blood panels today are still out of whack and I am currently taking 19 different medications and compounds to fight all of the years of damage and inflammation built up in my body. But the word I would use to describe my emotional state post-diagnosis is: vindicated. I am grateful to finally have an all-encompassing diagnosis for my various ailments. I am thankful too that I found a group of physicians who wanted to address the root cause of my suffering, not just treat my symptoms. I am lucky that I can start the work to reclaim my body and come back stronger than I was before Lyme.