Finally free after 8 years of living with a cane
Gambling on Life: Finding real success in treatment
filed under "Gambling on Life"
This post, like others that will follow it, is a continuation of my Gambling On Life series.
As a spoonie, I know how easy most people take things for granted, and appreciate so many more little things than I used to.
That appreciation is even more of a reality now thanks to a treatment for my chronic pain that is actually working.
I've been going to a rheumatologist for months. Labs, imaging, examinations and a lot of discussion have been the chief story of that journey until just a couple days ago when I was doing a follow-up visit to see how things are going with the latest medication we're trying.
First off: This should not be construed as medical advice, before we go any further.
Anyway, the first drug we tried was Hydroxichloroquine; that's right, the same supposed "COVID cure" (which is BS based on peer-reviewed medical research) is a common drug for folks like me with autoimmune disorders.
That one, unfortunately, didn't work.. But the doc had the next step planned already:
It's an oler anti-malarial with a remarkably similar chemical makeup, but he noted that some folks who didn't respond to hydroxychloroquine can respond to just plain old chloroquine.
I was.. Skeptical. I've been living with these issues for so long I wasn't sure I'd see any easy wins here.
Turns out, I was wrong.
When I was filling out my standard pain form, I realized.. Holy shit, I'm actually doing pretty good, and have been for a couple weeks.
I remembered walking Wal-Mart with just some minor stiffness and instability; no elevated pain.
I remembered multiple rain storms coming and going without any significant pain.
We talked about next steps: Right now we're going to just stay the course and let it build up in my system. It can take a while before you see the full effects of the medication, so if I'm just experiencing the early parts? You're damned right I'm happy about it.
I do have to make sure to get annual eye exams; Chloroquine can cause vision loss, which.. Is less than ideal, especially after what Gabapentin did to my vision, but so far I'm doing well, so I'm not as worried, and I'm not experiencing any real side effects (unlike hydroxychloroquine, which caused rashes and made my gums bleed multiple times a day).
Anyway, yesterday, I decided.. Let's ditch the cane for a day.
I walked multiple blocks, and even jogged a bit, and was almost in tears with joy.
You have no idea what it's like to be able to enjoy some semblance of what most folks would consider normalcy.
Sure, I'm still in some pain, and I do feel stiffness and swelling, but I can fucking walk significant amounts without a cane in my hand.
I'm expecting my life will be mostly cane-free, but I am still going to keep my backup folding cane handy for bad pain days, or days when my mobility is a little "off" (after all, I'm not just a spoonie, but I'm 40, too).
I'm perfectly OK with that.
Now I just gotta get my leg muscles used to being leg muscles again; I'm feeling some muscle pain, like I just had a good workout, but.. It's a beautiful kind of pain.
It's the kind of pain that you know will go away in the near future, and you'll be stronger afterwards.