I know I’ve been promising an update blog for ages and haven’t been following through. Sorry about that; my energy levels have been fluctuating and most days laying around binge watching stuff or gaming is about all I have any real desire for.
It’s been a long while since I’ve gone into any detail about what’s been going on with me, I mean I’ll do posts here and there about this appointment or this problem, but nothing really in depth. Part of that was just plain laziness, and part of it was out of a desire to not jinx myself.
Some months ago, I had Supartz (hyaluronnic acid) injection series in both of my knees - one shot a week for three weeks per knee. This has actually greatly improved my issues with my knees, especially considering the rather disastrous results of the corticosteroid injections that were tried prior that made the pain so much worse. My pain level in my knees has dissipated, initially by about 70% during the peak of its efficacy, but now as time has passed and weather has gotten wonky, I’d rate it as about a 50% pain relief which is still nothing to sneeze at by any means! Also, for some reason, this has also stopped my knees from subluxing and dislocating, which is a very, very welcome, if unexpected, result. It’s been a great change in my life to have my knees maxing out at a 6 on my knee pain scale at their absolute worst when prior to the Supartz, they were living there as their normal.
Another significant improvement is my migraines. My pain doctor had, back in August, given me an epidural. I hadn’t had another severe migraine until one last month, and the minor migraines I did get were very short lasting and more than tolerable compared to the 10 days of hell they were. I have also completely weaned off of the Topamax thanks to the epidural. I am going to be having another one soon as a result of the migraine last month - he wants to ensure that I don’t have more significant flares - and I never thought looking forward to needles being stuck in my neck would be a thing.
As of May 20th, I have been a non smoker; I’m more than proud of this particular achievement as it’s an addiction I had had since the age of 16, and really was my only addiction.
(Also, Turk and JD, my gerbils, are both in good health, if now living in separate habitats due to fighting.)
Now for the not-so-great. The degenerative discs in my thoracic spine have been giving me hell, leading to severe muscle spasms in my upper back, at times outright debilitating and nauseating pain, and pain that, oddly enough, radiates into my arms - this is usually a cervical spine problem, not thoracic, but as my pain doc says, my body can’t ever make anything easy. This has thrown the brakes on the next step of rehabilitation for my hips, knees and lumbar spine as I was going to go for aqua therapy, but doc now wants a new MRI of my t-spine as the most recent was 2 or 3 years ago, and we’ll see what we’ll see from there.
I’ve also been having a lot of sinus headaches due to the Sjogren’s causing chronic sinusitis and sinus infections, so that’s always fun, and as a result my eyes have been giving me problems as well - though I’m not 100% certain it’s all due to my sinuses, and will be getting another eye exam soon to ensure all is well with my eyes, as autoimmunes as well as Ehlers-Danlos like to attack organs like the eyes and ears.
My energy level has been in the toilet, and I’ve been doing my best to rectify that, but with little result. I have been eating healthier - well, as much as one can eating microwave meals (healthy choice steamers mostly) - but my appetite is fickle when I’m so tired. I honestly would love to get more raw foods and yummy vegetables into my diet, but prepping and cooking as a spoonie with a fatigue flare is laughable. I’m just glad flash freezing works well and I know that the vegetables in my steamers are nutritious. So I have that going for me.
All in all, the next few months is going to be a long process of diagnostic testing and treatment experimentation, followed by the long road of rehab, but I’m hoping I’ll eventually achieve a more pain-free life; something I wouldn’t have dared hope for not long ago, but my pain doc and the ideas and solutions he has come up with have given me that hope again. It’s kinda nice.
~Jade
