It’s been a week! As I fly from the middle school’s show into this weekend’s professional program, I’m feeling excited but exhausted. Six shows in two weeks!
In the midst of all of the craziness, my rescheduled pain management appointment, last Friday, gave me some clarity. Carpal tunnel syndrome in my already RSD-affected right arm. I mean, really? And let’s not forget my back, the gift that keeps on giving. Apparently the bulging discs are being negatively impacted by how knotted and strained my back muscles are. Of course…. because, why not? He recommends physical therapy, acupressure & acupuncture. I’ll begin that soon.
It feels like I walk a positive fifty steps ahead and then suddenly trip over obstacles that completely throw me backwards. That’s why I’ll never completely relax when it comes to my health. There is no “enjoy the silence” moment. There’s no silence. Ever.
Bad days with RSD feel like you’re sharing your body with something hell-bent on destroying you. Far too often, very little brings relief. Most things agitate the situation. Between the pain, burning, stress, lack of sleep and, worse, lack of understanding from others, bad days are CRAP.
Most good days with RSD feel like you’re being chased by something you can’t see. Like being hunted. The problem is that we don’t always know when or how we’re going to flare, what might set it off. There are certain semi-predictable aspects of RSD that we are fairly sure could negatively impact the day to day, (weather, illness, stress). But the random acts of flaring make it difficult.
Stubbing a toe, tripping, getting bumped in a crowded bus or train, stepping off of a curb – all can set off a firestorm of pain that most people don’t understand. And I seriously hope they never have to.
Take, for example, an event from my own life. I was walking past a crowded bus stop one afternoon. There were lots of kids. A couple of them started play-fighting and didn’t see me passing. I did everything short of climbing the wall of the building next to me to avoid getting bumped. It wasn’t enough. He barely hit my arm and side. But that was that. I felt it for the rest of the day.
Even less dramatic is what happens at my doctor’s office. Every time they examine my affected limbs, they try to gently feel for temperature differences and swelling. I inevitably feel that exam long after the fact. It starts nerve pangs that fire up the spasms in my hands and arms. It’s a vicious cycle.
I’m trying desperately to wear my compression gloves while I work and a nighttime arm brace for the carpal tunnel, (recommended by my doc). But my right hand – my sewing hand – is fighting with me at the moment. Swollen and sore, it burns throughout the day. And the spasms are worse right now. There’s not much I can do for lasting relief. I use heat but any comfort is short-lived.
At one point, the doctor said that he could do a caudal epidural to help my back. Go back to last summer’s blogs, if you haven’t already read them. I looked at him and asked, “No offense, but do you honestly think I’ll let any of you inject my back in any way? After what happened?” Sharp objects aren’t an option. He just nodded and agreed that noninvasive was best.
Then he moved on to what we can do for my arm. “There’s always surgery.” Really? That stopped me cold. “So that would involve operating on the more jammed-up of my two jammed-up arms?” To which he responded, “No? Okay.”
I’m forced to laugh at this point. I mean, what the heck else can I do. It is what it is.
So that’s where we are. I’m busy, happy and pained. Just like always. 😉 And now, I’m off to steam costumes for tonight. Life just keeps rolling on……
Be kind to one another.
Peace and painlessness,