I’m in one of those awesome “Sleep, who needs it?!” cycles. Even during periodic nocturnal suffocation (not the technical term), I generally fall right back asleep after my oxygen saturation goes back up. The past few nights I’ve found myself obsessing about the dumbest shit…like how I can’t prove my theory that Jon Snow is a Baratheon. What will it take for MC to see it my way? Does the great bearded glacier, George R.R. Martin have to come to my rescue? And I wonder if it ever occured to my friend that her very hairy cheek mole can be tweezed? Maybe no one has told her that’s an option. Should I tell her? Or does it keep her face warm?
Lack of sleep makes it extra difficult to function during the day, but it also makes the day extra interesting. On one hour of sleep, I’m also in a much better mood. Slap-happy is still happy, yeah?
Yesterday was long, today was just as long. I know what I want to say, but somewhere between my brain and my mouth/fingers, a ton of information is getting lost in translation. It’s like everything is happening in slow motion, including making corrections to what I said versus what I meant to say.
I saw the lung dude, the neuro doc, and the GI doc. Tomorrow is dialysis only, which makes me very happy. I’m not with it enough to suffer through another follow-up this week.
The pulmonologist wants me to submit more lung gunk to the lab for cultures because my lungs still sound like shit. It’s probably just pulmonary effusion, but he wants to make sure. I’ll do that tomorrow, maybe. His department also does sleep studies so I can expect to receive a call within the next week with my study date (it’ll be two nights total). I did well with CPAP in the hospital and I imagine it will be nice to not wake up feeling like I’m about to die. I was reprimanded for neglecting to use my PEP thingy and spirometer. Honestly, I haven’t thought of it. I’m not sure what good it’ll do. I cough plenty.
Neuro didn’t have much to say in his usual abrupt manner, other than asking me if my left eyelid has always been droopy. It hasn’t. Today was actually the first day I noticed it. I suspect this has something to do with being extra sleepy. Call me Quasimodo. He has no way of knowing if the steroids and plasmapheresis have done anything for the alleged NMO attack (can you tell I still refuse to accept this diagnosis?) until I have another MRI and my blood work comes back indicating a reduction in antibodies. My physical exam was pretty normal for me. Distal numbness in my legs and arms, weakness, and areflexia up to my knees/elbows. I have foot drop on both sides, but the right side is markedly worse. That right foot keeps trying to kill me. How many times do I have to break it to get it to behave?! I haven’t had any seizures since being discharged, at least none that I’m aware of. I was hoping the two drugs he has me on that make me derpy could be reduced, but he doesn’t want to mess with dosage just yet. That last seizure I had was something called Status Epilepticus and it knocked me out for 18 hours. Sonofabitch. He wants to see me again in two weeks after I’ve had another brain, c and t spine MRI. My vision is still not what it was and I’m continuing to have pain behind my left eye. The thing about nerves is that even if the treatment worked, those suckers take for-fucking-ever to heal and recalibrate.
Above is what happens when your foot gets stuck in the carpet. Fuck you, pedatard.
GI wants my poop, that sick bastard. I’m complaining about my super watery runs, which I blame on the tube formula. He’s worried about C.Diff and keeps mentioning short bowel syndrome. My gut is still very tender, especially in the area surrounding the anastomosis. I guess it hasn’t been that long since surgery. I was supposed to start Remicade infusions, but that has been postponed indefinitely because of my heart. Looks like I’ve become steroid dependent. Unfortunately for me, it doesn’t seem to be working that well. My ESR and C-RP haven’t come down nearly as much as I’d expect having been on high doses of assorted steroids for two full months. The GI doc is perplexed by it, so that makes two of us. My liver enzymes are only two to three times above normal, so at least that’s okay for now.
No day is complete without bitching about family. Here I go!
Harpy is always looking for a way to add to the drama. What now? She’s demanding reimbursement for looking after MC and running him to appointments for four months. She was the one holding him hostage. Only a month of that is when he wasn’t allowed to drive. I bought him groceries, I cooked for him. She insisted on buying up all of the hotel rooms near the clinic so the whole fucking extended family could stay up there. I paid for my own room to share with my Mom. She needs to crawl back into the devil’s asshole, where she belongs. Kill it. Kill it with fire.