I’m shocking myself right now. Writing this post five days in advance?!?! On a Monday?!? If I wasn’t so afraid I’d forget the things I want to say, I’d have left it for Thursday/Friday. But, here I am, an organized (sort of) and professional (ok, that might be a bit of a stretch) blogger.😉
So…. latex balloons. Yup. I FINALLY figured out the taste in my mouth. The phantosmia flared up on Friday morning. My tongue was tingling and everything tasted like…… something. It irked me to no end that I couldn’t label it.
By Sunday afternoon, the sensation and taste were grossing me out and ruining everything I ate/drank. Including my coffee. I cannot have my coffee ruined. It hurts too much. Seriously.
[Author note: this is where my “professional” efforts flailed and sank. I stopped writing and it’s now Friday! Back to normal. 😂 I had to stop for a while. “A while” = four days. But at least I got things started on Monday. That, in and of itself, was miraculous].
Then it dawned on me what everything tasted like! You know those bags of latex balloons? You can get them in party supply places, 99¢ shops, and (at least in NYC) office supply stores.
Well, that’s it. I feel like I’ve swallowed a bag of cheap balloons. Yuck. Seriously, yuck. I remember, back when I was a kid, getting those balloons at birthday parties and trying to blow them up. Everyone sputtering and working hard to make it happen, with – more often than not – little to show for the effort. Some kids would get it right away, but it would mostly end with a bunch of tiny, slightly inflated balloons. 😂In a little while, the taste would always get me and I’d give up. But that’s it. Latex balloons. Again, I have to say it: yuck.
That’s been the taste in my mouth since last Friday, on and off. Mostly on. There’s nothing I can do about it, so I can’t get too upset. What’s the point? But that’s the least of my problems this week.
I’ve written about the pain in my left shoulder. Well, apparently, my right shoulder felt left out. I’ve had pain in both, intermittently, for years. But this feels new-ish. New because it’s uncomfortable to raise my right arm. It clicks too, like the bones are working against each other. It’s new because, when I’ve tried to lidocaine the back of my shoulder, I’ve struggled. Struggled to handle the pain of touching my skin. It takes about ten-fifteen seconds before it’s unbearable and I have to stop. That is new. And it makes me angry.
I’ve had that with my legs. I’ve had it with my arms. Never with my shoulders. This kind of new infuriates me. Is it a CRPS spread? I don’t know and it really doesn’t matter if it is. It doesn’t change anything, right? We all know I have CRPS. We all know that it affects most of my body. Why wouldn’t it take even more real estate? 😡
Anyway, I lidocaine as fast as I can before those precious seconds are up and then I move on to the next area. This week, it’s both shoulders, both knees, both calves, lower back, right foot, and – worst of all – a section of my back on the upper right side. (See diagram). That’s a lot of ground to cover. The most that I’ve had all at one time in a long time.
I sleep on my left side and try to keep my legs straight. Inevitably, I’m curled up and have to work a bit to unbend my right leg in the morning. Let me tell you, it’s not easy and it’s incredibly painful. The audible CRACK is always fun to hear. Not.
But earlier in the week, I was dozing on and off during the night. I woke up fully because the pain in my right knee and foot/ankle was so extreme, I wanted to cry. Let’s not forget that this is the same foot with the hallux rigidus, so that’s always fun. The whole thing overwhelmed me. I got up and lidocained everything and went back to bed. You can imagine how well I slept, LOL. This was Tuesday into Wednesday.
I guess it was Wednesday night when I got into bed and started arranging all of my pillows. I merely rolled onto my left side and had a pain that felt like an ice pic going into the right side of my back.
Full disclosure: I have knots on knots on knots (seriously) in my back. I immediately tried to locate the exact spot that hurt as much as it did. It didn’t take long. And the pain is acute to take my breath away. Last night, my husband tried to massage it and felt the knots, but I’m concerned it’s also a tear. I don’t know. The one thing I’m certain of is that I need an in-person visit to my doc. Not an emergency appointment. But one where he can check both shoulders, my knees, and this new spot.
My back is probably my longest running issue. Since I was a kid, hauling a heavy backpack, I’ve had pain. That’s due to the congenital spinal issues, I know. But I think years of walking carefully, “guarding” in every moment I made for a lot of years, all of it contributes to the issues I have today. The knots. The pain. All of it. Even my doc has said he didn’t know someone could be so knotted up. Neither did I, doc. Neither did I.
So I’ll continue to lidocaine everything. I love how I’ve turned it into a verb 😂 I’ll also continue my everyday meds and doses of medical marijuana. That helped me sort of sleep the other night.
Oh! One more weird thing. Every now and then, as I wash my face, I touch a painful spot on the outer edge of my left eye. On the bone. It’s strange because I’d have expected it to be caused by some sort of impact. But I haven’t bumped into anything. And I have to believe I’d remember smashing my eye socket on something. LOL. 🤔
What a week. My doc will be thrilled with me next week. Not only did I screw up my appointment, but I’m also rolling up to the zoom with a suitcase full of problems. Yay!
Here’s to….. here’s to not having the taste of balloons in our mouths, to not having new pains, and to all things calm and safe.
I’ll see you next week.❤️
Peace and painlessness, Beck ❤️
#thisiswhatsicklookslike #rsd #crps #arachnoiditis #autoimmune #migraine #sacroiliacjoint #facetjoint #backpain #medicalmarijuana #patientadvocacy #painintheBECK