I owe everyone an apology and explanation as to where I've been. It's long over-due, and I don't want anyone left hanging anymore.
Back in, I'd say, very early 2020 (like December 2019/January 2020) I started to experience extreme fatigue. I thought, "Joy, I love fibromyalgia!" and didn't give it a second thought beyond resting until it passed.
It passed four months ago.
We thought certain stressors, like Covid (which I didn't catch, thank goodness) and Dusty being laid off (we're fine, so don't worry about it) contributed to the lengthy flare I was experiencing. Even my rheumatologist seemed to think so, and due to Covid happening not long after the flare started, we just hoped to ride it out. My appetite, what little I had, disappeared. I barely drank or ate anything. And yes, my rheumatologist believes I dehydrated myself, which contributed to everything going on. I was in pain, constantly, that not even the medical marijuana could touch. I lost track of time, how long I'd been in bed, what day of the week it was, sometimes what month it was. My brother-in-law lost his home and had to move in with us. Luckily, his wife and I get along great, so there were no concerns there. Dusty was laid off, which meant we would, eventually, have to sell our dream home and move.
And then restrictions lifted and I could see my doc in person. She was horrified by my condition. Blood work was done, MRI's, x-rays, and in the end...not much had changed. My AS (ankylosing spondylitis) hadn't fused much more of my spine than it had before the lengthy flare. Which turned out to not be a fibro flare after all. And damn it, I'm kinda mad that none of us, including myself, realized what was really going on.
My biologics had stopped working on me, meaning my AS was fully active again.
Biologics target specific parts of the immune system, effectively causing those parts to stop attacking my body. In other words, stop trying to fuse my spine, damn it! But the body becomes adjusted over time to the biologic, making it less and less effective until you come out of remission and go into a full-on AS flare.
The cure was to put me on a different biologic. The new one is called Taltz. It's a once-a-month injection that I do myself, and after five months I'm doing much better than I was. I'm moving around, helping to move into our new home. I'm sitting here, typing this out, which six months ago I couldn't do. I feel like an idiot for not understanding enough about my own body to let that flare go on so long without questioning whether or not it was medication related. My only excuse is there was so much going on that it just never occured to me.
I don't want, nor expect, anyone to feel pity for me. I've lived with this disorder a long time and I learned something new that cost me quite a bit, but gained me quite a bit as well. I'm now in a new home with Dusty, my boys and my BIL and his family as well, and we're actually quite happy with it. I've got my little corner of the fireplace room, where I can write once more and hopefully get Jamie and Hope's story banged out before the end times come.
I'm recovering, slowly but surely getting a little better every day.
I'm going to try and be more active on social media now that I'm actually capable of sitting at my desk for more than five minutes without screaming. I'll try answering emails a little more often as well. Please, be patient with me. I've had slide-back days that are coming less and less frequently, but they do happen.
I'm so, so sorry that I didn't think to have Dusty post something about what was going on. He's had to carry the load for both of us, and he's been my rock through this whole thing. He's been going through his own issues as well as having to deal with mine. I love him more than anything, and could never ask for a better life partner than him, so go easy on him.
In a couple of weeks I'll write a blog post about the Saga of Vineland, where our new home is. It's been...interesting? Fun? Costly? Maybe chaotic would be the best word for it. I'm sitting here, shaking my head and not sure whether to laugh or cry, but I will say despite the, um, interesting things that have been happening, I love my new home and am happy we're here.
I love you guys. I'll try and keep you more in the loop from now on. I'm going to give Dusty the ability to post for me either here or on my blog just in case I can't. Right now he's in full-0n househusband mode, but he's talked about helping me with certain aspects of my writing career, like marketing and advertising, and I might just take him up on that.
If anyone has any questions for me, I'll mostly be on Facebook. I have trouble following Twitter for some reason, but I'll try and pop in there as well. The links to my social media are at the bottom of this page.
Again, I love you guys. Sorry to make you wait. Now, excuse me while I go work on Jamie and Hope. They've waited long enough.
