I’ve begun this blog so many times, but the wording always seems wrong. Either I’m far too upbeat, or I’m far too pessimistic. This is my attempt to just be honest.
About a month ago I began struggling with increasing fatigue. The weather here has been more hot and humid than usual, so I told myself it was just my neurological issues acting up. I’d also had a rather nasty seizure due to a delay with filling one of my seizure medications, and my rather stupid decision to go for a long walk without drinking enough water. One of the issues I struggle with when my stomach acts up, is that I really don’t feel hungry or thirsty, until quite late in the day. The seizure led to a nasty infection in my hand, because I’d managed to give myself road rash from thrashing around on the really disgusting sidewalks downtown.
Now, at first I chalked up feeling like crap, to the antibiotics I had to take for that infection. Since I’m immune compromised, they’d done a massive IV infusion, then really major oral antibiotics afterwards. I think I was in denial, but I kept thinking about the cold I’d had, and telling myself, “You had a nasty summer cold, the weather has been hot and humid, you were on antibiotics,” etc. I basically just kept coming up with options other than a relapse. Then the bleeding started.
My GI bleeding isn’t exemplary in terms of amount, but it is exemplary in both persistence, and the obviousness of it being from my actual intestines and not my rectum. I did have rectal ulcers, and one oh-so-lovely genital ulcer, but none of that was bleeding. I could feel the stabbing pain in my colon, as well as various points in my intestines, and the color wasn’t bright enough to have been strictly caused by the rectal ulcers. Try as I might, there was no denying I was at the very least, having a GI flare up.
Things only went downhill from there. My appetite became so poor, along with my thirst, that I began purchasing Gatorade and Boost. Then the shaking began. I’d been dealing with morning shakiness for a while, but the amount of time I spent violently shaking became longer and longer. I would get up at 9 or 10 in the morning, and shake until 1 or 2 in the afternoon. My service dog in-training was a bit annoyed that I needed him wearing his harness at all times, because I couldn’t trust my footing in the house. Soon I was using my walker again. I fell into the dishwasher, pulling it loose from the wall, and even fell a few times while outside.
I was lucky enough to finally get my primary care doctor to inject me with steroids, but I haven’t tolerated the oral steroids, meaning I’ll likely go in next week for more injections. I’ve begged my doctors to allow me to self-adminster IM injections at home, but they’re all insistent on going the oral route, or going into the office for the injections. My primary care doctor, and neurologist, have both decided that a lightweight wheelchair is a good decision. I won’t use it all the time, but on days when I’m feeling weak, it’ll lessen my fall risk. I also hope that it will enable me to return to work, as disability was denied again. Now they’re saying I have to weight 18-24 months for a court hearing, even though the state failed to process my neurological issues, which is one of the biggest reasons I can’t work reliably, along with the GI issues, of course.
It’s hard to know what to feel. I have this overwhelming urge to stay positive, but I’m pissed off. I had my last round of chemotherapy in April. I relapsed 4 months later, with my severe symptoms cropping up around 5 months after completion. I spent more time going through chemo, than I did in remission. While I’m beyond grateful that my neurological issues are stable, I’ve had to face that I will never be neurological “normal.” After breaking down in my neurologist’s office, he suggested that I was emotionally unstable. I wanted to smack him. Of course I’m emotionally unstable, my body continues to let me down, even when I do everything in my power to try and give it a fighting chance.
So that’s where I am as of right now. Financially struggling, emotionally struggling, but still determined to find a way to live my life. At least once my wheelchair comes, I can begin to make plans without worrying that I’ll be too weak to participate. I have a backup option for mobility. I’ll also (hopefully) stop falling like a drunkard while walking around downtown on hotter days. I still worry about things, like finding love, and settling into a family someday, but I just have to hope that it all works out. First and foremost I need to find a way to persevere, even if my body seems determined to drag me down.