You know how everyone always says “I’m fine” when asked how they are doing, because it’s just easier than telling the truth? Well, that’s been my go-to phrase this past year. The absolute most insane health challenges have happened to me in 2017, but due to the intricacies and very odd nature of what I’ve had to deal with, it’s been easier to just not talk about it. I kept telling myself, “I’ll wait until it gets better—then I’ll explain it all.” But it’s a year later, and I’m not there yet. I keep getting asked by fellow Lyme and mold patients, “how are you doing now?” And so far I haven’t wanted to address that question, because I didn’t like the answer. But I’m done waiting. Here’s an update:
In early-mid 2016 I was doing phenomenally. I was getting farther in my mold treatment and was able to do things physically that I hadn’t been able to do since I was 13. I never dreamed I would feel that good again. I didn’t even have an understanding of what “that good” felt like! Things were truly great. And it remained great…until late 2016. That’s when everything started to fall apart—and fall apart in the most abnormal, unexplainable ways.
It started off slowly. My left arm began feeling weak with exertion. At first I noticed it when I was doing the plank (…because yeah, I felt so awesome that I kept beating my own planking record!!) and after I finished the exercise, my left arm would feel very fatigued and I didn’t want to use it. Then the bar lowered, and I didn’t need to plank for it to happen. It would feel really weak even if I was washing pans in the sink. But only my left arm—not my right. Then it would happen when I was carrying groceries. And finally, by just lifting my water bottle. As the weakness grew worse, my arm began to change colors with any amount of use. It would literally turn blue or deep red, and feel ice cold. One moment my arm would be fine, and I was going about life, and the next, I’d lift up a bag of groceries and instantly my arm would change colors. I’d feel pain deep in my shoulder, my hand would feel like ice, and I’d lose all use of my arm. It got so bad that I literally couldn’t grip or move it. It was completely dead weight from the shoulder down.
I consulted with my extensive list of medical personnel I’ve acquired over the years, yet no one knew what this could possibly be. As I searched for answers, the problem kept getting worse and worse. It could now get triggered by me lifting something heavy in my other arm. My right arm would lift up the groceries, yet my left would be the one to “turn off” as I called it. Or I’d stand for too long, and my legs would be tired, but instead of my legs giving out, my left arm would take the beating. None of it made any sense!
What I was experiencing was so completely different from anything I’ve dealt with before—when I tried to explain it to people, it made me sound insane. But who could make this up? I didn’t even have to worry about new doctors not believing me, because all I had to do was lift up my left arm and boom—seeing is believing. But no matter who believed me, we couldn’t find answers.
Then I found a functional neurologist who felt he could help me. He performed various testing that showed my right brain was not working with my left cerebellum. (Right brain controls the left side of the body…my left arm was the symptom, but my right brain was the problem.) We began working 2-3 days a week to retrain my brain to better communicate with my body. It all came down to a nervous system issue—and in order to fix it, I had to do lots of retraining work.
But to my amazement, it was a success! After a couple months we noticed progress. And then just like that, we had rapid progress! I went from not being able to lift a water bottle, to lifting whatever I wanted, and being able to jump around and exercise again. I got to experience first-hand how retraining my brain could literally keep the communication pathways open from my brain to my arm. It was amazing. By summer 2017 I was doing so well, and my doctor and I were planning to film an interview together to explain our crazy adventure.
But before we could get around to filming that video, everything started slipping in the opposite direction. I’ve never had the pleasure of being diagnosed with health problems that fit into a nice little box. We always sort of have to make my own box, and that’s what we did here. But suddenly I wasn’t welcome in that box anymore, and the rules changed out of nowhere. What had once been a left arm issue was now a full body issue. If I over exerted myself, my left arm often remained “on” but the rest of me would crumble. I began having myoclonic reactions, which are involuntary jerks from the core.
It got so bad that there were days I barely made it home from work, and would have seizure-like uncontrollable jerks, being unable to talk because I couldn’t control my tongue. I would just shake violently in bed, my back and neck hurting immensely from my muscles being constantly tensed against my will, but being unable to do anything about it.
Everything became so unpredictable at this point. I never knew from one minute to the next how I would feel. So many new symptoms started to pop up, and it took everything I had to continue going to work each day. Some days I would be relatively “fine” and could get through my day with no issues, and others were spent laying on my office floor during breaks, trying not to lose control of my body.
Currently there is so much up in the air for me. I never know how I will feel 2 minutes in the future, so I just live in the now. I’m grateful when I feel okay, and when I don’t, I push through until I eventually feel okay again. There’s no rhyme or reason. No way of predicting. I’ve raised my acceptable limits of symptoms so that I can say today was “fine” and truly mean it, even though “fine” now has a new definition.
I often feel like if I don’t have something good to say, then I shouldn’t say anything at all. So for the past year, I’ve chosen to remain silent. But I have now changed my view. I’ve been through SO many health challenges over the past decade. I get knocked down, but so far I’ve always gotten back up. This is another one of those moments. Yeah, I’m tired from constantly having to choose to get back up each day, but I have so many reasons to keep fighting. And in early 2018 I’ll be adding a new specialist to the team and working to figure this crazy thing out.
I look forward to the day when I write about how amazing I’m doing. And how my arm and body are all acting like a normal person and not flipping out just because they can. But for now I just keep swimming, and wait for that day to come.
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