Being sick is my full-time job, except I don’t get paid, days off, or vacation.
Being sick is my full-time job, except I don't get paid, days off, or vacation. #chroniclife
— Elizabeth Barone (@elizabethbarone) October 18, 2016
It’s been nine years since everything changed. I went from mostly healthy to being unable to get out of bed during the worst of flares. It all started with a numb arm, then joint pain and fatigue. I got passed from doctor to doctor—none of whom could figure it out. At best, they’d scratch their heads. At worst, they suggested my problem was psychiatric.
This whole thing has been enough to drive me insane, and today nearly pushed me over the edge.
Last fall, I was diagnosed with Reactive Arthritis by my rheumatologist, Dr. M. She said it could still be Rheumatoid Arthritis, but since I’m seronegative and my arthritis seemed to be enthesitis-related, she decided to treat it as ReA. She started me on Sulfasalazine and for the first time in nearly a decade, I started to feel hopeful.
That’s all been ripped away.
Over the summer, I found out Dr. M was leaving the practice. I saw my new rheumatologist, Dr. S, in September, and the appointment did not go well. I still really want to stress that he was very nice. He just didn’t listen. I called the office to complain and after a bit of pushing, was able to switch to another rheumatologist—as long as Dr. S okayed it. In the meantime, I was supposed to get my blood work done.
I finally did last Thursday. It took me a while, because as usual, my life was blowing up. I was dealing with pain and fatigue, financial stress, and my Biz Noni passed away. But I went, even though I didn’t have any expectations. “Everything came back normal” is a string of four words that I’ve come to loathe. However, Dr. S called me back personally yesterday evening. I missed the call, so he left a voicemail asking me to call back as soon as possible.
I knew right away that something had shown up.
I got the voicemail after office hours, so I called first thing this morning. And Dr. S told me that one of the antibodies for Lupus came back positive.
I’ve done this dance before. Anyone who’s been with me since my blog was called Perpetual Smile knows that my previous primary care physician was convinced I have Lupus. But because my blood work is always borderline, that diagnosis was dropped after seeing a rheumatologist. I was with Dr. G for years until he retired, and he always told me that my blood work is at the bell curve—that something is brewing. But “something” isn’t helpful, and if it’s only brewing, I sure as fuck don’t want to know what full blown feels like. Dr. G didn’t want to diagnose me with or treat me for anything until we had something definitive—which could take years. In the meantime, I was miserable.
This whole thing has been maddening.
So here I am again: maybe Lupus. No diagnosis. I can’t work a normal job because my illness makes me flaky, but I don’t qualify for disability because I don’t have a diagnosis. (And even then, when I did have one, I got denied.) Because Dr. S didn’t think I could possibly have arthritis, I was taken off Sulfasalazine. All I have is Tramadol, and it isn’t enough. It tones the pain down to a 8 or 7 out of 10, but often it barely makes a difference. And I can’t function on stronger painkillers.
I’m back to square one. The entire past nine years of labs and doctor’s appointments are meaningless. And while part of me is kind of all “See, I told you so”—since Dr. S kind of dismissed me—the rest of me is seesawing between shock and… I guess denial would be the best word.
I don’t want this.
But I do have to admit, ReA never really fit. SSZ helped at first but then I felt worse. And ReA is not triggered by mono, whereas Lupus is. Lupus explains the weird labs, the painless sores in my mouth, the joint pain, the fatigue…
Honestly, though, I don’t know if I can go through all of this again, only to be told “Nope, sorry—we still don’t know what’s wrong.” I don’t know if I can do another eight years of this. I’ll do it anyway, of course, because I need to feel better and I want to know what’s been completely ruining my quality of life.
But fuck me. Again? Really?!