Klamblog - March 25th, 2022 · 9:11pm Mar 25th, 2022
Hi.
I haven’t made a post for a lot of reasons. Mostly because I didn’t want it to be all doom and gloom. I’ve been in a lot of pain and dealing with a lot of problems that, as I’ve come to learn, even when I THINK I understand, I don’t. There have been doctor's visits, but they've amounted to little as of yet. I’m undergoing physical therapy, but it’s slow going. All that’s really changed is my health care provider and the amount I owe in medical bills.
I’m not sure how much to share. The misdiagnosis back in November left questioning many things. Part of me wants to say I have a better idea than ever of what might be causing my medical issues. Another part of me says if I had a nickel for every time I’ve thought that, I could buy a gallon of gas. I suppose the best thing to do is talk about things on a high level while also being concise, but if any of you have read my stories, you’ll know brevity is something I struggle with.
I’ve switched doctors a few times now, mostly due to cost and insurance reasons. It took most of January to get it all sorted. I did sign up for the CMT1A clinical trials, and they’ve done a bunch of tests on me to see if I’m eligible. Haven’t heard back yet. I’ve had ongoing GI issues that I’d rather not get into, but just know we’re still figuring out how best to treat them. I’ve also had nasty circulation problems in my hands and feet (Raynaud’s Phenomenon), but I’ve had that for a few years now. I’ve found some herbal supplements that have helped. My restless leg syndrome has gone away thanks to doing yoga, and I’m managing my insomnia with supplements.
It’s safe to say that depression has been the source of my apathy. It’s nothing new. I was diagnosed well over a decade ago. Genetic predisposition on my mother’s side and all that. About a year ago, I decided to switch antidepressants because I just couldn’t deal with the side effects anymore. It hasn’t worked out, as you can likely guess. But my doctors kept trying different ones, and a few weeks ago we finally found one that seems to work well. That’s a big reason why I’ve finally had the drive to power through the ringing and type this out.
I’ve recently started seeing a specialized PT who’s got me going through this structured program for my hypermobility. The thought right now is that the ringing and pulsing in my head is due to both my hypermobility and my family’s genetic neuropathic disorder. My joints are inherently unstable, which means my muscles have to compensate. But my muscles are short, tight, and prone to atrophy, so that means other muscle groups have to join in to pick up the slack. This leads to a domino effect of overcompensation. It starts in the core and cascades up the back, shoulders, neck, and jaw. Fatigue sets in because certain muscle groups are being overworked, and the muscles that SHOULD be working are getting weaker from lack of use. Over time, this can lead to various kinds of muscle and nerve issues, general poor circulation, spine issues, restless leg syndrome, numbness and tingling, jaw pain, headaches, tinnitus, and oh so much more.
The thought right now is that my sedentary lifestyle combined with my family’s genetic peripheral neuropathy and hypermobility has led to my health problems. Having my hips replaced when I was 15 also hasn’t helped matters. The exercise regimen my PT prescribed focuses on muscle strengthening, neuromuscular reeducation, postural alignment, and joint stability. We’ve been focusing on my core muscles for now, but the goal is to work up to the back, shoulders, and neck. We’ll probably work on my legs too to address my sciatica at some point.
I’m afraid I haven’t gotten much relief as of yet. Granted, I’m only three weeks into the program, but you have to understand that there’s been no true relief from the ringing all this time. Sitting, standing, moving around, being still, laying down, stress, anxiety, all of it aggravates the ringing. I can’t type or barely even THINK when the very act of typing and working just makes the ringing worse. And if you add in the stress of not knowing what’s wrong, constantly going from doctor to doctor with no concrete answers other than “make sure you pay your bill”, the constant pain without understanding the cause, without even a fucking inkling to it and being effectively at its mercy, the waiting and confusion, the frustration, the endless red tape, the stress of the holidays thrown in for a while, the panic of whether I’ll be able to keep my job, all of that and more… yeah.
I understand talking about things on such a high level leaves a lot of room for assumption. Hopefully this blog reads well enough that people don’t misinterpret something I’ve said, but that’s practically inevitable. Am I still around? Yes. How am I feeling? Fucking horrible, I’m trapped in a perpetual hell of ringing pulsing noise that gets worse when I literally do fucking anything. Am I any closer to getting better? I don’t know, I’m trying. If I do get better, do I intend to get back to writing? Yes. Do I need someone to talk to about this? No, that would require typing, and additionally, talking about this just stresses me out. Both of these things make the ringing worse. Have I tried text-to-speech programs like Dragon? Yes, but I couldn’t do creative writing with them because that’s not how my brain works. Believe me, I tried.
I… can’t really think of anything else to say. I suppose I’ll just end it here.
That's horrible I hope you get better soon! Don't stress over writing you take care of yourself first.
You are not alone my friend. Don't need to respond to this if you want but know your not alone. Stay strong do what has to be done and never give up I know it's hard, be harder doing it alone you have us your fans and people who care stay strong you can conquer anything you truly put effort into. You are in my thoughts and prayers.
I’m sorry to hear that Klamnei. Do focus on yourself and whatever makes you feel better. I wish you the best of luck with your exercises.
As always a fan of yours. I hope the best for you. :)
May the tinnitus be dealt with for you so very quickly. I can get how awful that bleep is all too well. And I hope for things to improve so much.
Jesus Christ that's a lot of separate medical problems. Stay strong.
Well fudge. All I can do unfortunately is wish you get better.
Thank you for the universes you’ve let us peak in on.
"gently hugs you"
Please, take care of yourself first and foremost. You're an excellent writer and an even more awesome person; we're all more than happy to wait for you
We have your back, my friend.
Damn. I’m sorry to hear about how your health has been. I hope you will be able to find out exactly what the issues are and can get effective treatment. It’s good to heat that they found an antidepressant that works for you.
Still thinking about you and hoping that your condition has improved, or at the very least has not progressed in the nearly 5 months since your last post.
Please, hang in there and keep your hope alive!