Klamblog - October 26th, 2022 · 5:02pm Oct 26th, 2022
Hi.
Sorry to those who’ve reached out to me and I haven’t responded. I know you probably mean well, but I haven’t had any positive news to give, and I knew admitting that wouldn’t be good for my morale. For the better part of this year, all of my efforts have effectively been the equivalent of spinning my tires. I don’t want to write about how shitty I feel, as that’s not the kind of thing I want to make public. At that point I’m essentially just bitching for the sake of pity or venting about everything, and this isn’t the place or medium for that. Part of me kinda feels like making these blogs in the first place was really cringe, and that’s also played into my reluctance.
But at the same time, I did start making these blogs with the intent of keeping people informed.
I’ve seen twenty-six different medical professionals as of writing this. Different ones have chosen to focus on different things, which in some ways is good but in others is unbelievably frustrating. We live in a time of specialists that have such a narrow but deep understanding of a certain part of the body, and they assume that every person that walks through their door has a problem related to what they know, and so that’s the lens they look through. If they can’t find anything wrong with you in relation to their specialty, they’ll often times throw up their hands and wish you the best of luck. It’s then up to YOU as the patient to backtrack and try again with another doctor to see if they can diagnose the problem.
I honestly don’t know if I’ve made any kind of headway or not. Untangling this gigantic mess seems nigh impossible. Certain symptoms fall in line with one problem, but then other symptoms don’t and potentially confuse the doctors into thinking it’s something else. If only it could be so easy as “go to doctor, get diagnosis, decide on treatment” instead of multiple separate things compounding into a big ball of fuck. We’ve tried so many things that have failed to the point that the failure in and of itself has become a clue through process of elimination. I honestly don’t know if we’re any closer to finding an answer, but I’m still at the mercy of schedules regardless. Sometimes it’s been only a few days of waiting, other times it’s been seven fucking months. Right now I’m waiting on the results of a sleep study, an MRI appointment, a follow-up appointment with a migraine doctor, a new appointment with a neurotologist (ear nerve doctor), and a follow-up with my new psychiatrist. This last month alone I’ve seen an ENT, a sleep study doctor, a psychiatrist, two specialist neurologists, an audiologist, a neuro-ophthalmologist, and started getting weekly allergy shots.
I’m not confident in saying we understand much. Doctors are trying things, but we still know so little. About all that’s confirmed is that the nerves of my eyes are perfectly fine, I have both seasonal and year-round allergies, I have some mild hearing loss in the mid-upper tones, and I have RLS and CMT1A. There’s a chance I have some kind of sleep apnea. Already did a sleep study, just waiting on the results now. If I do have sleep apnea, I may undergo additional pulmonary testing to check my autonomic breathing. I'll almost certainly get a machine to help me breathe while I'm sleeping, which should drastically improve my sleep quality and, in theory, alleviate many, if not all of my symptoms. I may also have a tendency to have migraines. If I do, it’s not clear what triggers them. Might be dietary, might be seasonal, might be something to do with something else. Symptoms have been happening regardless of what I’ve tried.
The issue also may have something to do with the nerves and inner organs of the ear. That’s what the MRI is going to check, and what the appointment with the neurotologist is for. Unfortunately, the neurotology appointment isn't until late May of next year. I'm on the wait-list for any openings. Omega oof.
So, yeah. Still don’t know what’s wrong. Still mentally brain dead, still feel like a bobblehead at the computer, still have issues with ringing and pulsing in my head. We’re coming up on 2 years now of this. I tell doctors I’m completely useless and can’t get anything done at work, let alone my personal projects, but that doesn’t seem to be enough of a motivator for them. I’m just sitting here existing. I’ve tried so many different fields of medicine to try and find an answer. The doctors keep saying how difficult it is to pin down my kind of symptoms because they can be caused by so many different things. I believe them, but that doesn’t make this any easier to live with.
The next big thing is the results of the sleep test. I get them in 2 weeks. There’s been a lot of evidence to suggest sleep apnea might be a major factor here. However, it wouldn’t be the first time I’ve said that and was proven completely and utterly wrong. If anything astounding comes of it, I’ll post about it here. Otherwise, just assume it was another dead end.
Wish me luck.
Sending all the luck I can!
Good luck!
My prayers go out to you. I my not know your frustration (that may be putting it too lightly), but i can emphasize with it. I pray that one of the doctors you meet can find the cause of this and help bring a end to this vicious cycle. You have my thoughts and prayers.
Damn, feel better!
News is news and that's still good to have. Hoping for the best for you.
I'm glad to hear from you Klamnei. Even if you don't have happy news.
Whatever your challenges may be, physical or mental, one thing or many things at once, your pain is genuine. You're hurting. And its okay to acknowledge that pain. I'm not gonna expect happy stuff from you, or demand for you to perform.
I'm just a humble fan of the smut fics you wrote, and if they need to be indefinitely on hold, or even cancelled, then so be it. They're secondary to your health. And I hope have success in your battles with these ailments, or find a new normal with them that you find functional.
I once went through a four year long severe depression. I know what deep chronic pain can be like. I empathize.
Good luck.