Content note: This is about health issues and chronic illness. Not much detail, but I do talk about my journey toward finding answers for a mystery disorder, and there’s mention of medical error and fat-shaming.
It’s been a while since I’ve blogged, aside from the occasional featured book or snippet of what I’m supposed to be working on. So I figured it was time for an update for the six or seven people who might read this. It’ll save me from having to individually explain things, too. I can direct the curious folks to this post.
A favor, before I begin: I’m going to talk about the last year and my challenge in finding a decent doctor and getting a diagnosis for my Mystery Illness. I don’t want or need anyone to armchair diagnose me. So as tempting as it may be, please keep it to yourself. It won’t help me find answers, trust me.
Onward and upward.
One of the reasons I haven’t posted much in the last year is that I’ve a) had too little energy and b) had too many doctor appointments. This is quite a journey, so buckle up.
About six years ago now, I suddenly (or so it seemed) got sick. Really sick. Not the germ kind but the “what in holy hell is wrong with me” kind. I went from very fit and active to feeling all the time like I had the flu, minus the coughing. Body aches, chills, fatigue…constantly. I endured it for three months before I finally went to the doctor to find out if I had mono or something similar.
She barely looked at me, pronounced that I had fibromyalgia, and sent me for three blood tests, kind of the standard for the common autoimmune disorders. The general test came back positive (more or less), and the specific ones negative.
I thought the diagnosis didn’t fit at all. At the time, my symptoms didn’t match the way in which fibromyalgia was diagnosed. My doctor didn’t check beyond the two disorders, and I had the sense there might be others. So I saw a rheumatologist, who agreed with my primary care doctor. He told me to go home, take vitamin D, and do yoga. No lie.
Did it help? Sort of, for a while.
I tried to stay as active as I could, but I was exhausted all the time, and exercise didn’t help or even made me worse, depending. I stopped seeing the rheumatologist because I had the sense he didn’t particularly believe me. Neither did my primary care doctor, so I quit her too, and then she left the practice.
It may seem like the wrong thing to do, and perhaps it was, but I never signed on with a new primary care doctor. I didn’t have the motivation. We got a dog, and I had a brief, mild remission, so I started to get back in shape with my dog. It was nice.
And then I got sicker again over the winter.
Same symptoms, different day. I dealt with it, but it left me worse off even when the flare-up subsided.
What changed my mind on seeking answers was writing a novel.
I had a character in process of being given a complex diagnosis. While researching, I discovered there was a lot of overlap between his symptoms and mine, though I knew I didn’t have the same thing. Still, it motivated me to reconsider getting help.
It took me more than another year. In the meantime, I got tired of being less active than before, so I started a dance class…and promptly had a minor injury.
That caused me to seek medical attention. I took an appointment with the first doctor available, since no one would see me without a new patient visit. That was a mistake (though in the end, it all worked out better this way).
I’d accepted the fibromyalgia diagnosis, more or less, even though it still seemed like an ill-fitting shoe. The resident at the new doctor’s office was fantastic, and he was the first person to suggest I didn’t have fibromyalgia, or at least that we had to make sure.
Then I saw the attending physician. There’s a reason I’ve taken to calling him Dr. Jerkface (all my doctors have nicknames). He spent most of our time fat-shaming me, though to his credit, he was the only one who actually physically examined me at that point. And he did point out that my feet have collapsing arches and I needed better shoes. Otherwise, though, he was terrible.
He wouldn’t x-ray my injured ankle until I lost weight, and he told me my fibromyalgia would go away if I weren’t so fat.
I never returned there. I gave up for another six months.
Until I was so desperate and in so much pain (thanks, flare-up) that I had to find a new doctor.
I called my old practice, since I’d always loved that office. The hotline said they had a doctor accepting new patients. The woman who answered told me they had one doctor, a man. I hesitated. Did I want another male doctor who might be condescending or fat-shaming or both?
The woman said this doctor was new, and then she quickly corrected herself to say new to the practice, not new to medicine. Once again, I hesitated. I assumed she meant he was older, a transfer from another office in the system.
But I said yes.
I’m glad I did.
I had an appointment within two weeks of calling, the soonest I’d ever gotten. In that time, I prepared myself. I had my story ready, and I was going to halt any fat-shaming in its tracks. No one was going to treat me the way other doctors had, and if they did, I’d be demanding another doctor.
Whatever I was expecting when my new doctor walked into the room, he was most certainly not it. He was young. Really young. Like, closer-to-my-kids’-ages-than-mine young. The scheduler hadn’t been kidding about him being new, and yes, he was new to medicine (as in, this is his first solo job!).
He read all the notes, and then he started to comment on my weight. I put up a hand and stopped him right there. And then I gave him the saga of my previous five years (in a lot more detail than I’ve put here).
As I talked, his eyes widened and his jaw dropped. He’s got an incredibly expressive face (and manner generally), and he hides nothing. I registered surprise, sympathy, disgust (for how I’d been treated before), and determination.
It took us a few more visits and some blood tests, and he put me on meds that reduce my pain level and keep the fatigue and brain fog at bay. But then he said something: “I don’t think you have fibromyalgia.”
He sent me to a new rheumatologist.
And here’s where it gets tricky.
She ran a bunch of tests. Lots of them. Some came up inconclusive. Some were clearly negative. A couple were definitely, distinctly positive.
Two visits in, I had a new diagnosis and more meds. Except I thought she’d jumped the gun (again). I didn’t have symptoms that matched. A week after starting the meds, I had another flare-up, plus a reaction to the meds.
Everyone denied I was having a reaction.
So I stayed on them, despite intermittently losing feeling in my limbs. I barely survived a dance recital, exiting the stage limping and unable to feel my feet while my legs shook uncontrollably.
That got worse. Much worse.
By the time I stopped the meds, I couldn’t take the stairs or turn my head or raise my arms or lift the half-gallon pitcher of water we keep in our fridge. I couldn’t sing or chew or smile. I couldn’t stand unsupported, and walking was a challenge.
I couldn’t play my violin.
My primary care doctor sent me to a neurologist and for a series of MRIs. My rheumatologist didn’t believe me that it was the meds and told me to keep taking them…for another two months. She noted the weakness and said maybe I needed to add a stronger medication, an immunosuppressant.
A week after stopping the meds, my muscles were all completely fine. The numbness was mostly gone, aside from the little bit I’d already had. I was in more pain, but it was entirely worth it to be able to walk and climb stairs again.
This is already getting long, but to sum up, I still don’t have a correct diagnosis. I won’t be returning to the rheumatologist who ignored my medication reaction and refuses to acknowledge that she diagnosed me based on a single blood test and no symptoms. She kept saying (about both fibromyalgia and her updated diagnosis) that I just had an “atypical” version.
Well, I apparently could have an “atypical” version of several things.
And it turns out that’s a real thing.
I’m not wrong, and I’m not making it up. Somehow, I’ve managed to develop a disorder that sits between other ones, that likely won’t develop into anything that’s a clear, concrete match. It hides itself by borrowing bits and pieces of other things, mimicking them but rarely becoming any of them.
Somehow, for me, that seems fitting.
I’ve always said I’m not a “choose a side” kind of person. I won’t give up my Jewish identity, but I also won’t reject the Christian community that welcomed me in at my worst time. I refuse to become an invisible bisexual in my hetero-appearing relationship. My gender defies the binaries. In all these things, I’ve found peace and balance, a harmony between two worlds.
It makes sense that my body, even in illness, would reject a distinct label.
I’ll be seeing a new rheumatologist, a fresh start. This is a chance to find balance there too. I’ll have to learn how to manage my symptoms better and how to take care of my body while also juggling work, writing, and our family’s active, busy lifestyle.
But I can do this. I can find a new kind of harmony with my body instead of fighting it.
Hey, if you made it this far, kudos. Just to reiterate, I don’t yet have a diagnosis, but I’m ten steps closer. My amazing, wonderful primary care doctor (nicknamed Captain America ‘cause he’s a hero and not jaded enough to be any of the others) has given me a temporary medication to relieve the pain and inflammation. It does work (though not as well as steroids, sadly).
I’m on the right track, though, and I’m going to start off my year attempting both orchestra and dance (now that I’m not too weak!). I’m trying to get into shape for both with some strength training.
And of course, I’m grateful for those who have stuck by me and are still supporting me. It means everything.
I’ll update when there’s something new to know. Until then, I may fall silent again. But know that I’m around, in the background, doing my thing the best I can.
