Three in the godsdamn AM.
Current music 🎶 : Avenue of Shapes— Robin Guthrie and Harold Budd
I can’t sleep.
Today at the doctor’s office, I walked in looking for an answer to the narcolepsy and blood sugar episodes that have been growing more and more frequent and disruptive. When I described just a few of them, and exactly how they manifested — the ones that came on when I was feeling at my most wide awake especially bugged me — I saw a look of intense concern flash across my doctor’s face.
It’s never a good thing when your doctor loses his poker face.
He broke out his stethoscope then, and instructed me to do the deep breathing thing.
After this, he told me that this did not sound like narcolepsy OR blood sugar — though yes, my hypoglycemia is being a problematic little bitch. (My words.)
This is cardiac.
Everything between that and “You’ll need to call the hospital to arrange to pick up a monitor to wear for a few days” is a complete fucking blank. I’ve been in shock since 4:30.
I’m supposed to be up for work in two hours.
The elevated liver numbers that have my GP mildly interested have given my gastroenterologist one hell of a concern. They want a liver ultrasound. And due to the whole late night coughing up acid and agonizing abdominal pain thing that responds to nothing, they also want an endoscopy, just to make sure nothing is fucked. So I’m going to need a ride that day. They also agree that the weight thing is a distribution situation re: losing inches but not weight, and that the blood sugar is probably because of one specific medication and to just keep an eye on it.
Today, my BDD was out in full force.
Sitting on the bus, a voice in my head repeated: “Fattie. Fattie. What happened? You were so good last week. One piece of toast a day! You can do it again! Maybe half! Do you want to stay like this? Fattie? Look at yourself. Fattie.”
It was all I could do to not scream “SHUT UP!” at the voice in my head.
I caught a glimpse of my reflection in a shiny surface.
There is a reason why I don’t own a mirror big enough to see my body.
It took some mental wrangling to get myself to eat when I got home. Hell, I’m still hungry. But I’m also trying to shut that voice up again so I can eat in peace.
I mean, I was too sick to eat last week and the voice HEAPS PRAISE on that
It’s not easy. It’s not simple.
But it’s everyday.
… I better eat so I won’t get sick again.
Confession: I will probably stick to those clicker lancets, because frankly even they make me jumpy. I recoil at standard lancets. It’s the visible needle. I have this thing with needles. If I can’t see the needle, I’m ok, but if I can see it then good luck.
I specifically ask doctors and med techs to not let me see the needles when there is a needle necessary. Of course, there’s a weird thing where I can taste some needles when they go in. (I can’t explain it, it’s always been a thing.)
Though I’m not diabetic or prediabetic, a work doctor a while back advised me to keep track of my blood sugar, after I had a hypoglycemic event in the office. It was confirmed by my doctor later on: I have nonreactive hypoglycemia.
Confounding Factor: My meds spike my levels artificially. So I have to keep an eye on THAT. The same meds also crash it.
So, at different times of the day, I have to determine if my malaise is general fatigue, the fibro, or if my blood sugar has just cratered. Usually it’s a combination of the second two and a cup of sugar coffee and an apple fixes things.
But first, I have to brace for that little stick…
I wouldn’t turn down money though lol.
It’s been hectic. Got rid of the bugs. My Outlook account is buggin’.
My doctor discontinued my gut medicine and it’s like $70/month for a month’s supply if he doesn’t fix it.
There is still a gaping gouge in my ceiling.
I dislocated my knee seven times last month. The good knee.
But I’m going to try to write again. I fell into this…hole, and I wasn’t writing. I haven’t been able to get it going. But I’m going to do it. I’m going to push forward and write again. Cooking, photography, and writing are the things that make me happy, and I haven’t been doing any of them. But I’m going to change that starting now.
It’s time to get moving.
…ps, if you want to feed the starving artist
, feel free to toss a few at. $20 feeds me for a week with this injured esophagus.
Today, I read an article on the pain of fibromyalgia that I could have written myself. I knew the back pains, the jaw pains. I knew the truly bizarre things the muscles do. I knew the feeling of having had my body’s muscles go through a meat grinder, get salted, and then shoved back in as if they were supposed to be useful again.
I recognized the tales of budgeting against the next day if a work day was horrid. I saw myself in the stories of struggling to get a position that wasn’t approximately “wail like hit dog.”
I muttered, “This is a thing” on reading about fatigue attacks. It was both validation and horror.
I saw way too much of me in the stories about the head fog. I was actually coming out one when I began this entry. What did I fog on, you ask? WHERE I WAS. I didn’t know where I was.
Reading about budgeting leisure time, the feeling that friends may think one is dodging them, really hit. But how do you socialize when you cannot even roll over without making a noise that makes a cat’s mothering instincts go off? (It’s really sad when you know which meow is the “are you ok” meow for more than one cat…)
I tried to find the article again and couldn’t. I’m putting it off to fog, but I have concerns about it. I know it existed—there was an illustration that very vividly described my pain in it that stuck with me. I was going to use the article to show my doctor we need to rethink my pain treatment, that this most likely the Big F—Fibromyalgia. But he’s not the best listener, and the only response I got from my message was a (probably needed) doubling of a medicine usually prescribed for it. But he stops short of a diagnosis.
Right now I just want to rest. I’m not even interested in food. Only rest.
I don’t know what this brain symbol means but boy howdy is this setting doing wonders on my pain.
Today, I tried doing research on TENS machines and chronic pain. I could barely find anything newer than ten years ago, and a lot of it was speculation. It’s like they haven’t been doing any research at all. Maybe they haven’t.
I can believe that.
But what I know is that during physical therapy for my crap knee, I was connected to one of those giant versions of these for a different purpose — trying to get the muscles to get active and stop this silly wasting nonsense they’ve developed (they have not; I’m on a specific diet to help that now). Instead I got intense pain relief. So I got my own secondhand device. And now, this one.
I’ve heard things like “the jury is still out,” or “we don’t know,” and even “that’s dangerous outside of the hospital.” It was actually the hospital that recommended this, when they saw this worked better than the NSAID that I was on a stomach-melting dose of.
Today, instead of a recalcitrant leg, I’ve got electrodes glued to my face, fighting a cluster headache. It comes back on a schedule, but this keeps it back from rendering me nonfunctional — ridiculous though I may look. The machine is small but mighty. I would love to see more science, because I like knowing how cool things like this work.
Right now though, I gotta reset my timer and intensity. I like not having a headache.