I haven’t written much of anything in the past fifteen months or so, and certainly not many blog posts. In fact, at times I didn’t really do much of anything. There were long stretches during which I couldn’t sleep, even with the help of various prescription medicines – I’d just lie in bed or on the couch, exhausted, my heart racing like I’d just outpaced Usain Bolt even though walking around the block would get me so winded I gave up. (Months earlier I had been walking 3 1/2-4 miles a day). I had to take time off, but couldn’t take more than a few days. so I went back to work despite the exhaustion and constant antsy feeling. No one seemed to notice that inside I was ready to jump out of my skin every second of the day.
That was in fall of 2014. The trouble, as near as I can tell, started back in July of that year, when I was on a very happy family vacation in southern California and was so moody I apparently bit the heads off of each member of my family more than once. The summer ended with a stay at a cabin in the Poconos with my parents and my sister and brother-in-law; I remember I couldn’t sleep and admitting that I felt weirdly anxious. I cried the whole way home – a three-hour drive – for no apparent reason.
I spent the fall in a glass case of emotion.
With nothing discernibly medically “wrong” with me, according to my primary doc, I turned to my ob-gyn, thinking that I had entered a menopause for the record books, especially since I had what seemed like textbook hot flashes. I tested as not menopausal, but we agreed that something was going on so I was put on a hormone patch. But I was in such a brain fog I misunderstood the directions for Estradiol and thought I changed it every four weeks, not every week. But once I got some better sleep, thanks to Ambien, I figured it out. Still, I lost twenty pounds in a a month, my eyes were freaking out and putting on their own little strobe show every time I looked anywhere near a light bulb, and every part of my body hurt like I’d been pummeled by some really angry trolls. But no doctor could find anything wrong with me. I went back to my ob-gyn and she had my thyroid tested. It was a little low, but many subsequent tests later showed that I didn’t have Hashimoto’s disease or any other issue beyond a goiter.
So I decided it must all be in my head. I have always suffered from depression (or, at least, since the age of 5, according to a therapist) but I had never experienced anxiety before, not at this constant, twenty-four-seven-high-alert-mode level. I called a psychiatrist I had seen before and she put me back on Celexa. At least I could sleep again, which had become a huge problem when my primary had decided that I had been on Ambien too long and cut me off.
That winter of 2015, things seemed pretty okay for awhile. My knees hurt a lot but I figured (1) I had just turned fifty and the warranty had apparently run out on my body and (2) I had done a massive amount of shoveling almost daily. But then I got pins and needles all over and had a weird period in which I was convinced I had carpal-tunnel syndrome. I didn’t tell anybody because I knew I was starting to sound like a serious (and tiresome) hypochondriac.
And then I almost went blind in one eye.
In May, at the beginning of finals week, I started seeing big black blobs everywhere I looked, like I was being followed by black flies that no one else could see. I googled “floaters” and found that they are the often inevitable result of aging. Fair enough. But by the end of the week I had lost 75% of the vision in my left eye and I spent Mother’s Day in the ER. I had a sudden collapsed retina, which my surgeon said was just the result of “bad luck” even though I had a few theories to offer. One was that someone, somewhere had a voodoo doll that looked just like me. And they freakin’ hated me.
After surgery and during recovery, when I got very used to operating with one good eye, my right knee swelled up and hurt so much I couldn’t move it or bend it. I’ve had natural childbirth twice and migraines many times, and this pain was right up there with those events in terms of intensity. I was on crutches and had been sent to the ortho because my primary feared I had deep vein thrombosis and forbade me from moving at all until my ortho appointment. My calves and feet swelled; I had MRIs taken and a large cyst was drained. The ortho surgeon had never seen anything like it. (He called it “impressive.” I was only a little flattered. At least I was good at something.) My calf drained, I felt better, for about three weeks. And then my right knee started swelling and hurting. And my right shoulder stiffened so much I couldn’t wriggle out of a camisole and had to pull it over my hips and step out of it. My kids couldn’t remember a time when I hadn’t been falling apart.
I knew this wasn’t just aging. I knew something was seriously wrong and that all of these weird things couldn’t be separate random occurrences. I did some research and was prepared to tell my ortho when I he drained the right knee that I didn’t think this was an orthopedic issue. He agreed and ordered blood tests for four different autoimmune disorders.
Weird as it sounds, I was elated. I felt like I would finally get an explanation for all the strange things that had happened to me and maybe even be vindicated in proving that my seemingly nutty invisible ailments were real. Two days later I found out that I had tested positive for Lyme disease.
I never would have guessed that was the source. I never got the rash and I never saw a tick on me, but that’s not that unusual, I found. Even though the telltale bull’s eye rash is the most commonly known symptom, not everyone gets it. And the ticks that carry the borella borgdoferi bacteria – the little bastards pictured here- are the size of a sesame seed. In the spring of 2014, I had been bored with my neighborhood walks and ventured onto woods and meadow trails. I had been skeeved out by the little garter snakes I’d hopped over but had never worried about the ticks that clung to the grasses I brushed past everyday.
Folks, worry about the ticks.
Use repellent, even though that is no guarantee of safety. Wear long pants and tuck your socks into your shoes. I am loathe to do this but it beats feeling everything I felt for the past year or so and the many worse symptoms some people get. It beats a month of antibiotics that throw you into “herxing”, a reaction to the deaths of all those little spirochetes that release toxins as they do not go gently into their good nights. (It feels like food poisoning – you get sweaty and hot and a headache and nauseated and your muscles hurt, but at least you know the antibiotics are creating the necessary killing fields within your own body. Gross, but I’ll take it.)
Only time will tell if the Doxycycline kills it all or if I will be in the estimated 20% of people who get chronic Lyme. My understanding so far, as I continue to research this, is that even those who are “cured” can relapse and have “flares.” But I remain hopeful. At least I know there isn’t some voodoo doll out there with my name on it.
And I’m going to get back to writing today. I don’t remember very well what I was writing about, but I’ll get back to it, and let myself take the breaks I need. (I learned two days ago that my get-up-early-and-take-no-prisoners approach to the day leaves me wiped out an useless on the couch by 10:30 AM). You learn to cope. I have ever renewed respect for anyone with a chronic illness, especially an illness that invites a lot of skepticism and even derision in its invisibility.
So who’s ready for a snarky, spunky YA heroine battling the SATs and spirochetes? I’ll call it
Okay. Not really. But the idea’s a start, right?
What I’m reading
What I’m listening to