This flare is annoying. I wish I’d taken pictures of the redness over the bridge of my nose, spreading across my cheeks in the familiar butterfly pattern. But I didn’t. So now, when I see my docs next week, I’ll have to try and remember when it started and how it looked. It’s faded a bit. And with all of the mask wearing, it’s sometimes hard to gauge whether it’s irritation from that or just my usual stuff. This time, however, I’m inclined to think it’s a flare. Because of everything that came with it.
The last week has been a blur of bad sleep, back pain, leg pain, BIG time phantom taste/smells, the lymph node from hell flaring up – painfully – and the rash. The node started in on Monday. And I only noticed it because it hurt to apply deodorant and to rest my arm at my side. It isn’t as swollen, just a bit harder and quite sore.
Have you ever become immobilized by things that happen over and over? By the exhaustion of patterns that repeat and remind you that you’re not in control?
I have. I am. I am officially exhausted. It seems ridiculous to even write it. Here I am, repeating yet another pattern: talking about all of this. Again! Flare. No flare. Flare. No flare.
The sacroiliac pain started to twinge when I stretched to reach for something. I stood up, slowly, and waited. It stopped, for the moment, and I went on with my night. That was on Monday.
Tuesday morning, little pangs every now and again. Not too bad. But, that afternoon, my gal and I were out running errands. I had been on my feet for a long time. We stood for a while. It was then that I realized that I had a very short window of time before my back locked. We made our way home. I’d barely reached the top of the stairs to our apartment door when my back clicked, locked, and rendered me stuck. Taking off my coat was tricky. Hanging it up on one of the wall hooks was impossible. Our gal is detail-oriented and misses nothing. I figured it was better to tell her, especially since I had to ask her to hang my coat for me.
The next few hours were spent with extra meds, my TENS unit (probably applied for longer than they’d recommend), and careful stretching. It wasn’t long before my joints unstuck themselves. The layer on top of all of this is arachnoiditis. As per usual, having the flare of one thing ignites the flare of all things in my body. Between the lack of sleep (my dark circles have dark circles and my puffiness has puffiness) and the autoimmune flare, I reeeeally wasn’t feeling my best. Across my lower back and down my legs – the. burn, ache, and rawness. Weird though, it’s a burning burn but it also feels like an ice burn. Imagine having Icy Hot traveling throughout your peripheral nervous system. Up and down your back, then up and down your limbs. Ick. As I type this, I’m wrapped up in warm clothes and a blanket to keep my arms and legs from getting more internally cold than they already are. It just amplifies the pain.
On Wednesday, I got a text to confirm my appointments for next week. How the heck did the time move so quickly? I’ve got two scheduled: the neurologist and my pain doc. Same day, two hours apart. The advantage to this is that they’re in the same office. I figured it was easier than having to make two trips into the city. Two birds….
That’s when I remembered that nothing is ever simple. That insurance companies require precertification for pretty much everything. I’d totally forgotten. After calling my doc to check in about it, I was told that they “are working on it.” Soooooo, the injection may not even happen. I can’t decide if I’m bummed out or secretly thrilled.
My back is in crisis mode. I know things can’t continue without some intervention. And, although I’m nervous to go to any doctor’s office right now, I’m relieved that I’ll be able to see my doc in person. It’s been 7 months since I’ve done that. The neurologist might be able to tell me why I continue to taste and smell things that aren’t there, why my tongue usually feels like I’ve eaten a box of Red Hots without the cinnamon. Or coated it in pepper.
I’m a weirdo. 🤦🏻♀️😂
We’ll see what happens. Next time you tune in, I’ll have either gotten the shot (and relief!) or begun the process of getting approval. Or maybe I’ll have canceled it altogether.
Here’s to whatever good things the universe would like toss our way. Here’s to ebbing flares (pleeeease). Here’s to Friday and to calm. I’m going to continue to wrap up and rest up.
Peace and painlessness,
#thisiswhatsicklookslike #rsd #crps #migraine #phantosmia #lupus #flare #autoimmune #arachnoiditis