02/20/2025
I'm finally on the road to recovery after nearly over a decade of severe undetected illness. Since 2014, the first time test results came back skewed, I've known that I'm low in free T3-the usable form of thyroid hormone that every cell in the human body needs. Over the years I'd gotten two doctors to take it seriously enough to prescribe levothyroxine, but it didn't help and they refused desiccated thyroid. This has affected every part of my being for many years, and now that I'm on proper treatment I'm finally grasping the scope of it. I also now understand why-MTHFR mutation. The same genetic mutation that's responsible for EDS, ASD, ADHD, and so many other things also in about 20% of people impairs the conversion of T4 to T3-leaving me chronically deficient.
The first organ to fail in hypothyroidism is the brain, and my mind was the first thing to be affected-long before the physical symptoms became noticeable. Since my teens I've struggled with treatment resistant depression, mood swings, hopelessness, multiple suicide attempts. Years of therapy, medications, learning healthy coping mechanisms, even resorting to ketamine treatments (which did help, and I highly recommend to anyone struggling)...nothing changed the way I felt, and I've known for a while now that it's not psychiatric, that it was something chemical and I just needed to figure out what was out of balance. I had attributed it to the AuDHD and thought I was going into perimenopause after developing hot flashes a couple years back. I've also known I had *something* autoimmune going on, but testing could never pin down what exactly it was, random things would test positive...but then next round of testing were absent. They never tested my thyroid antibodies. This has affected me for my entire life, and it was just so easy to attribute the symptoms to EDS and trauma.
But it was my thyroid. It only took 8 days on hormone replacement for that suffocating feeling to dissipate. I've been free of it for 7 weeks, for the first time in my life.
It's going to be a long road of recovery. 2024 was an exceptionally bad year, just one disaster after another while fighting to keep my head above water while what was left of my health slipped away. I wasn't able to leave the house, take care of chores, even showering and eating took too much energy. Everything I had to give went into working. From June/July up until a few weeks ago I couldn't eat at all, nothing sounded good and just the thought of *digesting* food was too much for me. I'm in rough shape, lot of nutrient deficiencies to recover from and a great deal of muscle wasting. And now that I'm starting to feel like myself again-the pain and fatigue has lifted and my mind is clear again (though memory is still shot and executive function is a struggle)-I'm admittedly impatient with my recovery. I have the energy and the drive...but I'm trapped in a very broken body.
Regardless, I'm thankful the worst of it is behind me. I've got a huge mess to clean up. All this went down while the apprentice I'd had working with me the previous year bailed out, followed by the nightmare of that "help" I brought in which turned into having to support another person who was doing the bare minimum and not paying attention to anything. There's a lot of missing orders I'm having to track down and get remade, dozens and dozens of orders that I handed off for packaging but vanished. I'm working my way through as quickly as I can though, and will continue to do so with dedication until I've got every last one of them replaced. It might take some time, but I'll get it back on track.
No matter what gets in my way, I don't let it beat me. I don't give up. If there's one thing in my life that I've been utterly dedicated to with every bone in my body-it's my work. I'm determined to do some good in this world with what life I've got left in me.
So for the time being I'm going to be running a sale to raise emergency funds to rebuild. I lost everything in the move and will be in an AirBNB for the next several months while I figure out what I want to do next. I'm strongly considering a big move, largely for my health. But at the moment I'm stuck in a rental car because mine isn't going to make it much further, and certainly won't make the numerous trips 2-3 hours out for all these doctor appointments I have coming up. I've gotta be able to cover not only the rental, but also get money together for another car. I'm hoping to avoid prolonging the rental as much as possible, it's just a giant money sink.
2024 was an exceptionally difficult year for many reasons, but I've remained determined and dedicated and am so excited to finally be out from under the mess I was left with back in spring. The decline in my health, which has been terrifying and has had such a massive impact on my ability to function normally for the last 3 years, shed light on underlying and previously dismissed issues, and for the first time since my EDS diagnosis in 2012 I have hope. With some changes to supplementation-switching to methylated versions to bypass the steps my body can't do-and addition of natural thyroid medication I should start seeing improvements in many aspects of my health. While undoubtedly some of the damage done will be permanent as this has gone unchecked for over a decade, overall most of the really debilitating facets of the illness should see a complete reversal. If my hunch about how I was feeling in the hospital in 2023 was right, I'll be back to the much different healthier and happier person I was so many years ago ❤