I’m sure the dysautonomics out there will totally ‘get’ this. Even as an RN for 30 years (the last 11 on disability, but I keep my license active to deal with myself !), I’m constantly learning about things I never bothered with much before. It all ‘worked’, so no need to pay attention to some stuff. Like the low blood pressure issues. I’ve pretty much lived by the motto that if it doesn’t cause symptoms, don’t focus on it. Well, that’s not a good philosophy. I found out that my blood pressure had been low enough for long enough to decrease blood flow through my kidneys, leaving abnormal renal function tests. I’d had a few ‘foggy’ episodes that correlate with hypotension, but I’ve got dysautonomia ! I always have some vital sign parameter that is off kilter. Anyway, some medication changes have helped, which is a huge relief. Dialysis has always been something I would seriously have to consider if I did it or not… and if not, that means life would be short. If I could do the nighttime dialysis at home, I’d do that. But going out three days a week, every week, indefinitely…. uh, no. Especially when it’s 20 below zero windchill. Fortunately, the last set of tests were better- so a definite scare, but not a disaster.
For the last few months, I’ve also had horrific right thing burning pain at night. I only lasted through the “without” contrast MRI (lying on my back ‘in the tube’ had me in tears…. I’ve joked during bone marrow biopsies. The MRI pain was worse; I’ve had many MRIs in the past, and they are no big deal… I left this one in tears). The burning comes and goes- so it’s not like it’s every night, which is good. My right thigh is also visibly ‘shrinking’. So, with the pain and atrophy, I’m scheduled for another EMG in a few weeks. It scares me that I won’t be fully ambulatory for as long as I’d hoped for… I’ve been walking more, the further out from chemo I get. I hope it’s enough to keep me vertical and independent.
I’ve also been having some GI tests done because my GERD/reflux has been bad. The endoscopy just showed chronic gastritis, so nothing that’s going to kill me. That’s good 🙂 I’m postponing two tests at this point until the leg thing gets taken care of, since the gastric emptying test requires me to be on my back for FOUR HOURS. Not likely to happen at this point. Nausea is pretty much a routine symptom. I’m not sure that swallowing the manometry thingie would work all that well. I also need a break from some of this stuff.
In the middle of all of this, my dog needed to have a toe amputated. It has been about a 5 week ordeal, with trying antibiotics in case the swelling was an infection, then the surgery and sutures in for two weeks. Now, she’s getting back to normal, and will go for a much-needed haircut at a good salon this week. The toe issues started (maybe coincidence ) after going to a chain store groomer. They lied on the ‘report’ that the nails had been done… they had not. I have little tolerance for lying. Anyway, she’s going to be OK.
I haven’t written a lot lately. I’m tired.