...some pretty big life changes, and why I seemingly abandoned this blog. Please bear with me, I know this will be lengthy.
In 2012 I got sick. Really sick. So sick I could no longer function. I had difficulty comprehending when people spoke to me, struggled to read. Extreme sensitivity to light and sound. Touch registering in my brain as pain. Whole body aches and pains, like coming down with the flu. Low grade fevers every single day. Numb, tingly areas on my skin, random places. The skin on the soles of my feet hurt so; felt like walking barefoot on sharp gravel.
New meds from my new rheumatologist helped with the pain a bit, but it wasn’t enough. But the fatigue, oh the fatigue, was the real clincher. How could someone so young, who looks fine, be so ill?
So ill that I could no longer stay awake for more than an hour or two, sleeping upwards of 20 hours a day. My mom said even I fell asleep while eating.
So debilitated that I, at 32, had to have my mom help me bathe and dress. For a while she delivered me and collected me from work every day. My coworkers, so very generous, worked with me as best they could, but I felt like a really lousy employee. I couldn’t really comprehend anything I was reading by then, but wasn’t really aware, just thinking I’m not trying hard enough.
So lost in this mucky, murky brain, there were times I didn’t know where I was. Or who I was. Afraid I was going crazy, I didn’t tell anyone that last part till years later.
So weak I remember hardly being able to hold myself upright in the chair in my rheumatologist’s exam room the day he said I should ask work for a medical leave of absence. Even though he didn’t know what else to treat.
To some of you out there, this may be sounding all too familiar...
Mom took me to doctor after doctor, every test under the sun. Nobody had an explanation, much less a treatment for me.
One day, before my medical leave of absence, I was talking to my dear friend Leslie at work. I had a huge stack of old tests and blood work that my family doctor had run over the past twenty years, ready to see yet another specialist later that day. She asked if I minded if she looked. Nope, not at all. I’m not that private, plus I was desperate for an answer, ready to try anything.
Leslie and her entire family have been battling with Lyme, and other tick-borne infections, for nearly two decades. She’s repeatedly asked me if I’d been tested for Lyme. Yeah, yeah, my family doctor testes me frequently. And as we worked through that stack we could see those test results, every year or two, with the same results- a big negative at the top of the report.
Then Leslie began trying to explain the results of the Western Blot to me. You have antibodies to this, this, this, and this, she says. The numbers are low. Too low to be “positive,” at least by the CDC’s “criteria.” But if you had never been exposed, those numbers would be zero.
And suddenly the light bulb went on for me. The way she explained that made sense. Here I had been thinking that because Leslie’s whole family was dealing with Lyme, she saw it everywhere. Nope. Leslie sees Lyme everywhere, because it is everywhere!
Well, this was one rock we hadn’t looked under yet. When mom came to pick me up from work that day, I asked Leslie to explain it to her, I’d never be able to articulate all that back to mom, much less a doctor. Mom listened and we began the hunt for a Lyme-literate doctor. Eventually we found a great one, and with each infection we treated, my health has improved!
Fortunately, I have an amazing team of doctors. My awesome family doctor who’s willing to listen and learn, and who take the time each patient needs at every visit. A (sadly now retired) rogue rheumatologist willing to try new things and fight the insurance company for me. A terrific and well informed Lyme-literate doctor. And finally my hematologist, another rogue, and real and true gem. Without these amazing, dedicated doctors, I truly believe I’m not being overly dramatic in saying that I would not be alive today. They have my eternal gratitude and love.
I know this was a long post, and thanks for sticking with me. It may sound like it was easy, but please believe me when I tell you it was a long, hard road full of friends, family, and doctors who clearly thought I was lazy, or crazy, or worse. Luckily for me, I have some truly amazing people and doctors in my life who fought on my behalf when I couldn’t and supported me through all this. I’ve skimmed over the worst of it, most of that time is a foggy jumble in my memory anyway, now we are out the upswing.
Yes friends, it’s a new year, full of new possibilities, a fresh page, and I’m ready to reclaim my life!
