Goings-on etc. fluffy rambles
Just farting my words into the ether, as usual.
Current medical status fluffy rambles
Just a little checkin on what’s going on with me, because there feels like a lot of it.
Diagnostic dilemma fluffy rambles
Okay, so, I’ve been having a lot more frustrating issues as of late:
- Whatever my connective tissue issue is, it’s getting way worse
- My kneecaps love to dislocate while I walk, and after 1.5 miles or so my knees start to give out under me
- My toes also love to either dislocate or weirdly cramp at random, which is quite painful, and getting them back in place is challenging
- My other joints (wrists, shoulders, TMJ, and sometimes elbows and ankles) are also in pain a lot of the time, and are possibly getting inflamed
- I’ve been having frequent bouts of vertigo (which are especially troubling when I’m driving)
- My tinnitus has gotten a lot worse recently
- Also my GERD is back, and my usual dietary measures to keep it at bay aren’t working
- I’m also getting occasional unexplained itchy rashes that flare up and subside after a few days
- And I am fatigued all. the damn. time.
Yesterday I had a doctor appointment to try to figure stuff out, and while the appointment itself was pretty unproductive due to the usual crap with modern healthcare practices, the doctor did at least run a lot of labwork for me, including checking autoimmune and inflammation factors and the most common connective tissue disorder markers. It all came back negative.
She did at least refer me to a rheumatologist, but I suspect the rheumatologist is just going to look at the labwork and say there’s nothing they can do for me. Most likely the answer is going to be the usual “diet and exercise,” when my diet is already pretty decent and I have difficulty doing exercise because of the very problems I’m complaning about.
The only thing that was even slightly out of the ordinary on the bloodwork was a borderline c-reactive protein, which indicates either systemic inflammation or coronary artery disease, and given that I’m a bit overweight I can guess which of the two the doctors are going to assume it is (especially without any other markers indicating underlying causes for inflammatory disease).
There’s got to be something causing all this but the state of the medical industry means that it’s unlikely that anyone I talk to in the medical field is going to come up with ideas on their own, they’re just going to tell me “diet and exercise” and to do BPPV exercises. During the Epley maneuver the vertigo does get way worse, but completing the maneuver doesn’t resolve it.
And of course none of this even comes close to addressing my joints not moving the way they’re supposed to. I love walking but I sure don’t like the feeling of my knee bending backwards when I do so. Nowadays I need knee braces and a cane whenever I go out, if I want to have any chance of making it home without being in agony. And never mind playing DDR.
It’s just, gosh. I wish someone out there also has these problems but also knows what the cause is so that I can find some hope of understanding what I can do to make things better. There is so much more I’d rather be doing than what I’m currently capable of.
Doctors, please listen fluffy rambles
I am in chronic pain. I have always been in some amount of pain. It’s become increasingly unbearable over the past 25 years. It’s not just all in my head.
I have always been overweight. I have always had high cholesterol. I have always had high triglycerides. No amount of chiding me about “diet” and “exercise” will change that. I am not lying to you about my dietary habits. I am not constantly shoveling down huge quantities of fast food. I exercise when I can, as much as I can. I mostly cook for myself, and I cook healthy foods.
The thing I eat the most of is salad!
There is probably a link between high triglycerides and fibromyalgia. There is a lot of evidence supporting that. But correlation is not causation. Given my lifestyle and dietary habits it seems unlikely that it’s the triglycerides causing the fibromyalgia. It’s probably the other way around, or there’s a common cause to both that has not yet been identified.
Treating me like a FUCKING CHILD WHO DOESN’T KNOW MY OWN BODY isn’t how to get me to feel better. Instead of just assuming that I don’t understand nutrition and don’t understand exercise and that I’m eating too much and drinking and smoking all the time, maybe. FUCKING. just FUCKING. LISTEN to me.
I promise that I am not lying about these things. I want to get better. It’s why I’m fucking coming to you.
While we’re at it, yes, I have sleep apnea of some sort, but three sleep studies have had conflicting results and either way, CPAP wasn’t helpful, and my most recent sleep study did not support the ongoing use of it. It wasn’t my choice to stop using it, it was AN ACTUAL FUCKING SLEEP DOCTOR who told me to stop using it and who stopped authorizing the refresh of the equipment. Which, you know. Requires a prescription. From a doctor. And I monitor my oxygen and heart rate most nights, and the metrics show that any breathing pauses are brief. And no I don’t want to be having them either! But chiding me for not using a CPAP that I’m not authorized to have isn’t. FUCKING. Helpful.
(And even if I did have obstructive apnea, most signs point to obstructive apnea causing weight gain, not the other way around.)
I am well aware that my lab results are troublesome. I am doing what I can. Don’t infantilize me and assume that I don’t understand that High Numbers Are Bad.
And yes I’ve tried statins and they just make me unable to move at all because of excruciating pain, and the same thing happened with fenofibrate. I’d be taking them if I could! I actually do want to get better! I am not making excuses! I am not being stubborn! It’s not like I have some sort of secret hatred of being on medication. Some people have a weird sense of pride about not taking meds, about seeing them as a failure. I don’t.
Miscellani fluffy rambles
Just a random check-in entry for folks to know what’s going on with me. Because that seems to be all that my blog is good for, all in all.
Osteopathy fluffy rambles
Today I had an appointment with an osteopath, which is basically a chiropractor but with a basis in actual medicine instead of weird quackery. It was an… interesting experience. An overall positive one, though.
She mostly worked on my neck and shoulders, which are feeling somewhat better, and also popped a couple of my vertebrae, which was a strange experience, but a good one. I’m not sure if it’s placebo or what but I definitely feel a lot better now than I did this morning, at least.
She encouraged me to keep seeing my current massage therapist (who I’ve found very helpful) and to wait a few days to see how I feel before scheduling another appointment with her. Unfortunately she (like most medical practitioners) is ridiculously overbooked and the next available appointment isn’t until February (I’d actually booked this one around two months ago, incidentally) but right now I’m at least feeling very encouraged.
It definitely hasn’t cured my pain but it at least feels way more manageable now.
Current goings-on fluffy rambles
Huh, it’s been a while since I’ve posted a blog entry. So let’s do some catch-up to the present, I guess.
Health updates, mine and cat’s fluffy rambles
fluffy’s health
My new doctor has already proven himself to be way, way better than my last doctor. He’s really diving into my records and gathering insight to confirm my suspicion of hEDS. Meanwhile he’s put me on muscle relaxants “as needed” and I was taking them a couple hours before bed for a few days and started to feel a lot better. But I haven’t been taking them for the past few days, and I’m feeling worse. Go figure. So, muscle tension is definitely a factor, which I think goes along with hEDS? Like, reducing my muscle tension gives my shitty connective tissue a better chance to actually heal.
I also finally got an appointment with a new dentist. It’s towards the end of September (I really should have gotten on this sooner, as I’m due for a cleaning in, like, a week) but I’m really optimistic about the new dentist; her intake form is incredibly inclusive regarding gender stuff (with an open-ended selection for pronouns, and gender checkboxes that include non-binary!) and neurodivergent things (questions about a whole bunch of dentist-specific anxiety triggers to avoid, whether a blanket or weighted vest helps, whether it’s okay to be lectured about dental health, etc.). Also, she’s a PoC. I’ve never had a dentist who wasn’t a white dude before, and maybe that explains why it’s always felt like dentists don’t care about privilege or diversity or, y'know, taking care to make people feel comfortable.
Werner’s health
Little dude is definitely slipping away more and more each day. By the rubric he’s probably past the point where I should consider euthanasia, but he doesn’t seem to be in pain and he’s enjoying pets/skritches/sitting with me/eating (especially stealing my food) so for now I’m going to just let it ride.
If he starts expressing pain I’ll have to make a tough choice, but for now he’s basically just getting progressively drunker and sleepier all the time (except when food’s involved). I really hope he just drifts off one time and never wakes up (although every time I check up on him he ends up waking up and gets excited about the prospect of food).
He’s having trouble staying steady while standing or walking, and Fiona’s started to interpret this as him being a lost kitten. She tries to pick him up by the scruff, even though he’s nearly as big as her, and he has none of it. So Fiona gets pretty confused by this.
Various updates fluffy rambles
fluffy health
So, I had a very bad experience with my doctor with this latest chronic pain flare (and the short-term disability leave situation), and with encouragement from my therapist I am switching to a different doctor. The doctor I’m switching to specializes in LGBT healthcare (and apparently 10% of his patients are trans) and also has a specific interest in treating chronic conditions, which is what I need.
I’ve also gone back to my self-determined physical therapy regimen. You know, the one that my GP and the pain doc and physical therapist she referred me to all think will cause more injury, even though it’s always helped me in the past. So far it feels like I’m actually making progress on recovery.
Said regimen:
- Frequent powerball sessions
- Upper-body stretching and partial chin-ups using a chin-up bar
- Playing DDR (okay I haven’t resumed that yet but I’ll probably be starting that again soon, and I’ll be streaming it when I do)
Regular check-in fluffy rambles
I’m personally physically all right, at least for now. The house guest also made it here safely, right before things got really weird.
I gotta say, getting an urgent group text informing my building of an incoming teargas cloud and “Close your windows” is not a thing I thought I’d ever experience first-hand.