My CRPS has spread into my left arm and hand.
When I had to have my endoscopy earlier this month, they (as always) had a terrible time getting an IV in me. Due to being chronically nauseous I am ALWAYS dehydrated. The dehydration and having tiny veins means that it often takes multiple people and multiple tries to even get an IV in me.
After several sticks they tried placing one in my left wrist. It didn’t work so they then ended up doing an IV in my hand. I remember feeling some trepidation as soon as they put the needle in my wrist but I really had to get the procedure to make sure I didn’t have an ulcer.
My wrist hurt a good bit afterwards and I immediately developed a bruise. Ive had a wrist IV before so I knew it would hurt for a bit.
However after the deep iris bruise faded on my wrist, the pain kept blooming in my left wrist.
Now it radiates down to my hand and up to my shoulder, enveloping places it shoudn’t. Its almost been a month, it shouldn’t hurt this much, it shouldn’t hurt at all.
Ive been holding my breath, waiting for whatever damage the IV did to calm. My PT furrowed her brow when I told her I was concerned, she said maybe the needle bruised my carpal tunnel nerve path.
I wanted to believe that. So much.
So I tried.
Tried to not over-react. Tried to stay hopeful. Tried to do all the things I thought could help: massaging ketamine cream into it 3x a day, using my ketamine nasal spray 2x a day, doing graded motor imagery for hands, and most of all using it even when it hurts.
I am always trying but sometimes I guess what I try isn’t always enough.
The day after Thanksgiving any doubts I had about it being a spread went out the window. My arm and hand hurt EXACTLY like my left foot/leg and right foot. That deep unyielding ache/burn, the intense pressure, sharp electrical sensations when I move my arm/hand in different ways, the horrific bone pain and tender muscles.
Sean told me I felt far away the day it happened. I am. I am somewhere else inside myself, trying to understand why another part of this body is now possibly “gone”. Yes, my arm and hand are still there but it doesn’t feel the same anymore and based on what I already know, it may not feel the same again.
I hope that isnt true.
I have always been avoidant of things that make me uncomfortable.
Bad relationships, bad jobs, bad friendships, I always find a way to to cast my eyes aside, turn my head, ignore whats happening because the truth feels too hard to bear.
CRPS is perfect for me in that sense. Avoid the limb/place its effecting and it can do as it pleases. If you “agree” with your brain and start to treat the area differently, you are only helping lay down the foundation. The less you use the limb, you are essentially building the floors and the walls, constructing the prison of pain that you cannot escape. You think you are “protecting” yourself, if you just avoid the pain, if you use it less and try not to piss it off further maybe you can control it somehow.
Instead you are just digging yourself a deeper hole, a little more rope to hang yourself with.
Every time my CRPS has spread, I immediately avoid using that limb/area, avoid touching it, avoid avoid avoid.
I know I could do that again. This is my 4th spread and my first spread into my upper body.
However a year has passed since my last spread and I know now what I must do. It is the EXACT opposite of how I have treated the other spreads.
I am waiting to hear back from my UVA dr, I would very much like to do a ketamine infusion ASAP to try and calm my nervous system down. I am not supposed to get ketamine again until February 7th but having a major spread like this means we have to do ANYTHING we can to get this under control.
If UVA says no ketamine for now, I hope we can come up with an aggressive game plan. I am done avoiding my body and letting CRPS continually ruin my life.
Some days I feel like I must be an awful person to deserve this. Some days I feel like giving up. Today I feel suspended between two worlds, almost half of me now in flames.
It’s time for me to take my body back, it’s time to fight for myself even though that sounds scary.
Listening to this song as I write and oh it hits so hard.
“Scattered shadows on a wall, you watch the long light fall
Some impressions stay and some will fade
Tattered shoes outside your door, clothes all on the floor
Your life feels like the morning after all year long.
Every day it starts again
You cannot say if you’re happy
You keep trying to be
Try harder, maybe this is not your year.
Movies, TV screens reflect just what you expected
There’s a world of shiny people somewhere else
Out there following their bliss
living easy, getting kissed
while you wonder what else you’re doing wrong
Breathe through it, write a list of desires
Make a toast, make a wish, slash some tires
Paint a heart repeating, beating “don’t give up, don’t give up, don’t give up.”
Not giving up yet.