It’s no secret that I’ve been stuck in a pretty constant flare that only seems to be getting worse. The only option I have is to wait for my insurance to approve IVIG. We’ve done one steroid dose pack and I’m preparing for a second. To make things even more fun, my rheumatologist is out on maternity leave, and my insurance company was taken over by another company (it’s a contract deal). The transition hasn’t been smooth, to the point where I can’t even call and get a hold of someone at my insurance company…and I’ve even trying for six weeks.
Yes folks, you read that properly, I haven’t been able to speak to a human being at my insurance company for over six weeks.
While this may annoy the average 31-year-old insured individual, it’s definitely not the best when you’re in the middle of complex insurance approval processes. My chair is coming on Monday (if I can work out a payment plan), but IVIG still remains in limbo. My rheumatologist’s replacement suggested I switch to another practice, something that was discussed a year ago but discarded as I prefer my rheumatologist, and the university hospital nearby has a horrid chief of rheumatology (or at least did a year ago). Point is, I like my rheumatologist, she just happened to have a baby the same time period where my insurance company went to shit.
I was dealing with the increased gastroparesis symptoms, the GI bleeding, the fatigue, all of it…and then something new for me happened. I woke up last weekend, with a blister on my hand. It was just a little thing, but over the course of the day it got worse and worse. There was speculation on my part, and my friends’ parts, over what caused this blister. The best we could come up with is that my hot water bottle somehow burned me, but I didn’t wake up, and the bottle doesn’t have a leak. Moreover, I haven’t ever had an issue with it. So this blister just keeps getting worse, and eventually it takes over my entire knuckle and is working down into my hand.
I’m being eaten by a blister of unknown origin.
My friend Mike is a chef, and he informs me that I need to ignore everyone else’s advice and just pop it, throw some antibacterial ointment on it, and go about my life. I call him stupid until the thing begins to get so big I don’t have much of a choice. I was not having that thing pop in my sleep, and realistically I’m too clumsy not to bump it on something and randomly (and disgustingly) pop it unexpectedly.
I pop it, and it’s not really anything special. I throw some bacitracin on it, and call it a day. The next day it’s tender, but not abnormal, and I keep it open so it can heal, but I’m careful to keep it clean, or so I thought. The next few days are a blur because I wasn’t feeling well in general, and I had an allergist appointment. What I do remember is looking at the spot where the blister had been, and being in denial that it was infected…until the day I went to the allergist, when I realized it was scabbing over pus filled portions, and literally creating an abscess.
I went from my allergist to my primary care doctor, who promptly told me I was correct, and it was definitely infected. He also informed me that autoimmune blistering is an actual thing. My body literally attacked the layers of my skin, creating a blister because it just destroyed a section on my hand. He gave me a prescription for antibiotics, but by the next day it was worse. Way worse. The night I’d gotten antibiotics it had worsened to the point where I had a thin layer of skin covering what was undoubtedly my tendon.
You shouldn’t be able to watch your tendons move, and while it was disturbing, I will admit it was kind of cool. Still, I don’t recommend it.
My doctor calls after I take another dose of the antibiotics that were already making me feel like total hell. Apparently I have a multi-drug resistant staph-infection, and while it isn’t MRSA, it doesn’t matter, because I’m allergic to all drugs ending in -cillin. Yay. We’ve established it’s getting rapidly worse, because I’m taking a boatload of immune suppressing drugs, even though they’re not doing a great job at treating my Behcet’s anyhow. Fantastic universe. So I’m sent to the ER.
The ER wasn’t too busy because of the time of day I went in. They ended up wanting an MRI because there was a chance my joint and tendon were infected, but thankfully they weren’t. That would have meant being admitted and going on IV drugs for a few days. I was given an IV push of an antibiotic (but honestly can’t remember the name), and send home on Keflex. I hate Keflex because of the nausea it causes, but I don’t have much of a choice because of my allergies. Another issue I have with Keflex is kind of weird. It makes me really drowsy, and actually gives me a fever. Not a high fever, but around 100-101, which also makes me feel crappy.
If that weren’t enough, I’ve been dealing with stress over finances, namely insurance funds, and coming up with the money for moving and medical equipment. Life should be easier when I have less rent to pay, but saving up the money to pay insurance installments three months at a time, is going to be really hard. This rough patch also doesn’t help.
Can we address the reality that my body is flaring, and there is a decent chance that the stress made it worse…and my body blistered itself.
I’m still sort of in awe that a body is capable of doing something like that. I think most of us who deal with autoimmune issues, have moments where we’re shocked at the destructive power of our own bodies. I’ve witnessed countless things, including losing the ability to move because of hyperactive reflexes, but somehow this one blister was more intense for me. I think there was something about being able to actually see with my eyes what my body was capable of. It was as though I was in some long cold war, and then someone dropped the first bomb. I was aware I was in a flare, I knew what was going on inside of my body, but seeing it externally was a whole new game. I’ve got an oral ulcer, and a few other external signs I’m flaring, but there was something about a blister that just felt different.
My roommate has reminded me to relax, that he’s handling the movers and the moving fees, but I’ve never had to rely so much on others, and it’s definitely taking it’s toll. For now I guess it’s all I can do. IVIG can’t come fast enough.