05/15/2025
Well, my AuDHD time blindness has definitely gotten the best of me! I didn't realize it had been so long since I added an update!
I actually ended up having to take a step back from the internet and social media for the sake of my mental health. I have enough fires in my own life trying to get my health back on track, I can't handle watching the world burn on top of it... And while I've popped my head on over the last week...I don't think I'm quite ready for it. It got worse than I expected.
As far as my health is going-it turns out that pretty much nothing that I've suffered through over the last 13 years was actually due to EDS (well, outside the obvious mechanical injuries and joint damage), it was my thyroid. That's another part of why I'm just keeping my head down and working right now, I'm processing some serious anger over those 13 lost years. This has always been in my labs, the symptoms were always there. Thirteen years of nights stretched into endless agony, my bones on fire and unable to sleep through it. Of not being able to leave the house, keep up on chores, eat. Sleep. So yeah, I have a lot of anger and grief to process right now. As one of my friends put it "the many ways you were fobbed off about this over the last decade should be considered abuse."
Unfortunately there's also something going on underneath triggering it, and we have to find out what. I did amazing on desiccated thyroid for about 5 weeks, then got hit with a flare so bad I couldn't stay awake for 3 days. I'm now on straight T3 monotherapy, since my body doesn't seem to want to convert T4 properly, we're just bypassing it. It's up and down, but thankfully overall good and steadily improving. For the time being, likely until we figure out the underlying issue, it's just going to be unpredictable. It seems to be about a week and a half to 2 weeks I'll feel great and be able to go beast mode and grind through orders, then I'll get hit with 3-4 days where I feel like death. Slow and steady though, I'm getting there.
As far as the work goes-despite being entirely on my own, I've been managing to get through everything at a good pace. I'm listening to my body more, so there's certain days certain splint types are a no go, some days I just have to go slow. This past week I've had to take "off" and work on backend stuff, we've had really bad weather and I've been in far too much pain for sitting up and doing physical work. So, I started working on all the pics and website updates that have been put off for far too long. While there's some changes (particularly with the thumb splints) and additions with Designer styles, what I', most excited about is the new combination and immobilizer splints I'll be bringing online this week. Two of the new thumb ones featured are from when I developed bilateral trigger thumb last spring. One that left me range of motion in my MCP joint while still supporting it and immobilizing the IP. I have a few others I'm planning on, notably a series of "EDS Specific" splints to help folks with EDS related issues by having a specific splint to order, rather than adding supports to other splints.
While the larger orders are still taking a bit longer due to the unpredictability of my health, overall orders have been going out largely on time and I'm catching up on the remakes quickly. We've had some increasing issues with USPS (which I'll be making a separate thing about later) that's led to delayed and missing shipments. I'm of course getting them replaced ASAP as well.
Overall it's been a rough few months trying to get everything put back together, but I'm glad to be rounding the corner and putting the nightmare behind me. While I didn't really see it while it was happening, in hindsight it's terrifying just how far I pushed myself. Just how close I was to the edge. How much of the damage may be permanent after doctors brushing me off for over a decade.
I'm taking more breaks these days. Still nowhere near enough, but I've at least dropped my skipping sleep to work 120 hour weeks" down to 60-80 hours and taking days off when I feel really unwell instead of red bulling my way through despite my body screaming at me to rest.
I thank you all again for your patience and understanding. I'm almost back ❤