The redundancy of life as a diseased person is, uh, redundant. I’m stuffing most of it into my magic carpet bag of misfortune and neglecting to journal properly. It does hold a purpose, writing about all of that unsavory stuff. It helps me keep track of the what/where/when/why of my medical torture. This in addition to what everyone already knows; blogging is therapy. The thing about therapy is that it’s difficult to make any sort of progress if you ignore the stuff that makes you uncomfortable.
Here it is, in all of its glory: my three-quarter-assed medical update broken down by specialty with pretty pictures thrown in to reduce eye strain, because I love us.
Cardio – No more pericarditis. My EKG was normal, and there was no apparent effusion on ultrasound. I’m still having some chest pain at night, so it’s possible there’s some sub-clinical inflammation still pissing off my heart-sack. An aspirin before bed seems to do the trick, which is horrible for me on so many levels. POTS is still a life-sucking whore. The drugs I’ve tried for this, propranolol and florinef, have had little to no impact on symptoms (Florinef wasn’t worth its salt, so to speak). Short of going into the hospital and having 2 liters of saline pushed in an hour, not much else does any bit of good (except for my medication for von willebrand – see below).
Blood Stuff – My MVI and Iron infusion orders expired. I was supposed to have them done weekly, but spent a month and a half out of state and never made the appropriate phone calls when I got home because other more dire stuff was occupying my time. After my iron/ferritin tests come back, I’ll hopefully resume these. I’ve had so much iron pumped into my body, plus multiple blood transfusions over the past year, that in spite of being anemic, iron overload is a concern. Dr. Brown-eyes (swoon) will put the order in after he receives the results, then I can schedule at will. My bleeding disorder is behaving. I take a couple of shots of desmopressin when my period gets out of control and that’s that. It also acutely raises my blood volume if I continue to drink normal amounts of fluids, so I get about a six hour break from POTS. With chronic hyponatremia and kidney disease, I can only use it to keep myself from bleeding out. If only my periods didn’t make me feel like the walking dead so I could take advantage of those six hours. My platelets are still low, but so is everything else. Things aren’t too exciting in the blood-land, and that’s the way uh huh-uh huh, I like it, uh huh-uh huh.
GI – AIH (auto-immune hep) is in remission, can I get a ‘fuck yeah!’? No? My liver is good and ready to process massive quantities of adult beverages! I kid. Sort of. Crohn’s, oh boy, this fucker is noshing away at my last nerve. I’ve been on Cimzia for 7 months, and added Imuran to that 3 months ago, yet my insides are still trying to become my outsides. I think I’ve been given placebo in those syringes. I had an abscess in a very uncomfortable place that had to be ass-pirated last week, and I will say it wasn’t a pleasant experience. I saw the butt man Monday morning and he believes things are stable enough (the prep and sedation won’t kill me) that I’m scheduled for an enteroscopy in two weeks, providing the sky doesn’t come crashing down between now and then. He cautioned if the ulcerations are too severe, the performing physician may opt to skip the dilation. Either way, surveillance is a good idea to determine if I need to switch biologics. This will be done inpatient. My diet is awful, but I’m adjusting. Eating is more important than labeling foods good vs. bad. Food is food, and I need the calories, good or bad.
Kidney Shit – Dialysis is back down to once a week, my kidney function is slowly creeping back up, and I should have this line yanked out of my chest by August. I may even be able to quit dialysis altogether if the upward trend continues. My urine has a lot of sediment in it – looks like sand, but it isn’t red, so whatever. I think the great nephropathy flare of 2016 has finally come to an end!
Neurological Shit – I had a brief period of, I dunno, better function? I had a tingling sensation when I scrubbed my feet, like some of the sensory input was making it to my brain. I also started to regain some feeling to just below my knees, then it all slowly went away and the spasms returned with a vengeance. My poor balance has remained the same throughout, unfortunately. I half expect things to improve again when I get back on multi-vitamin infusions. Oral vitamins only do so much for me when I don’t absorb shit. The pain is still intolerable when I’m not medicated, so as long as the river of Tramadol keeps flowing, it’s more of an annoyance than it is a limiting factor. I went numb in my crotch area, and have had the pleasure of incontinence that is associated with that sort of thing. On the bright side, no seizures. I’m not scheduled to see the neuro asshole until September. I’d like to skip it, for all of the good it’ll do me to see him (hint:none).
Ortho Crap – I haven’t seen the back dude about my herniated disc yet, and I’m pretty sure my numb tiddly bits can be blamed on this, so it’s probably important that I get in soon. I did manage to see a PA about my wonky ankle. It turns out one of my tendons had ruptured when I broke my ankle, then never healed properly. I have early grade 3 posterior tibial tendon dysfunction, which basically means my ankle is folding in on itself and my foot is always in the position to do pliés, though I’ll never be a ballerina because I’m too broken. I got a special brace for this, and it should help with the pain and also keep me from tripping over my foot as often. I had a chance to sit down with Dr. O, one of the radiologists, and we went over my ankle x-rays from last year because my husband thinks I should see a surgeon about re-breaking the bones and having them set properly (No thank you). This entire time, based on the reports, I was under the impression that they were very minor fractures, even though bimalleolar fractures are usually considered unstable and often necessitate surgical reduction/fixation. The fracture line on the fibula was diagonal, and so long, it’s no wonder I hurt half-way up the side of my calf. It was BROKEN to halfway up my calf. A big chunk of the medial malleolus was completely ripped off and just sort of floating there. It looks terribly painful. It’s funny and wonderful how quickly the memory of acute pain fades. I did all of this from tripping over my foot? Daaaaaaamn. I’m glad I didn’t see this when they told me to start walking again. As it was, I was about two weeks behind in my ability to tolerate standing and walking. They had me do a weight bearing xray study at three weeks, and I wanted to kill everyone I could reach.
Primary Care – Ah, Dr. Awesome. My advocate, my prescription pad, my favorite doctor. He put in another endo referral because the last time I had a CMP, my blood glucose was 36. This is quite low, but is relatively normal for me on a high carb diet. I eat, and then I crash hard a couple of hours later. The longer I’ve had this problem, the fewer symptoms I have during a sugar crash. I used to get nauseated, sweaty, shaky, and my heart raced. Now if I get super angry for no reason, it’s likely I need to eat right away, because not much else tells me I’m about to go into a hypoglycemic coma. I’ll go to get another work-up for adrenal insufficiency, which will be a waste of blood and four hours of my time. Isolated hypoglycemia is a thing, the last time I checked, but seeing my history of low cortisol makes him the third doctor who’s trying to confirm AI. Doctors love to beat a dead zebra.
Other Shit – Last year, I mentioned a couple of different times that I was referred to case management. It is extremely difficult to juggle all of these doctors and schedule appointments in the right order, as I’m often told “see your ___ doctor, then get back to me.” While the idea of being able to sit back and relax was very nice, case managers are isolated to the hospital in which they work. I happen to be treated at three different hospitals, so I continue to be my own case manager. It stinks, and I’m doing an awful job. In regards to my mental health, I’ve felt pretty good. I’m generally happier than I have a right to be, and I’m cool with that. Insomnia isn’t constant, which makes me think it’s hormonal. When it is a problem, it’s a BIG problem. I lose touch with reality for about a week, and then I get snapped with a giant rubber band and all is well.
That’s the state of Kara. Whew. That wasn’t so bad, was it? It looks like things are….improving? Very subtle improvements, but improvements nonetheless. Let’s focus on those and not that fact that I need big kid diapers from time to time. You may call me fluffy butt, if it pleases you.