Well that was fast. I’m off the Plaquenil (hydroxychloroquine) for good. I’m so weak, dizzy, and bloated. I don’t think it’s the drug’s fault, honestly, but boy does it amplify my IBS pain and bloat by like a bajillion.
I can’t even. My abdomen is so tender to the touch. There isn’t room for these behemoth-like intestines.
I messaged my doctor who reminded me we didn’t even have confirmation that this (waves at myself from head to toe) is autoimmune. He agreed I should stop taking the Plaquenil.
Gah! It’s so frustrating not knowing how to fix this.
There are a couple of bright sides to this story, though. First, Dr. Rheumatologist called in a prescription for a steroid dose pack. Praise jeebus!
I’ve been trying not to beg—in case they were a terribly ill-advised treatment—but I’m desperate.
I don’t know what’s causing these additional symptoms, but I do know perfectly well my body needs a little assistance to even have a chance to repair what’s wrecked.
In the past, palliative care would give me a short course of ‘roids. However, I don’t have palliative care here in Edwardsville, which means quality of life often takes a backseat to diagnosis.
I get it and I respect it, but it does present some challenges for a woman 7 years out from a brain tumor diagnosis. Like hooray, I’m alive. But also? It’d be nice if I could, you know, get out of bed.
Second bright side: I feel so awful this evening that it’s clearer how much better I was doing eating smaller portions more frequently, meditating daily, and not having to fuck around with health insurance.
(Things went sideways with Dan’s Medicaid today, but I don’t feel like explaining in detail. Suffice it to say we had enough on our plates already. And that extra $60 we need for his meds now wasn’t exactly budgeted.)
Anyway, here’s hoping the steroids give my body the boost it needs. It’s been trying way too hard for way too long.