February 4, 2021
Doctor’s appointments: 197
SG Nerve Block Procedures: 10
Counseling Sessions: 20
Medications: too many
There’s a moment every CRPS patient has when the doctor looks at you, shakes his/her head, and says there’s nothing more to be done. Nerve block after nerve block, medication after medication, physical therapy after physical therapy, dedication, perseverance, determination…after giving everything you have, it’s still not enough. The disease has done its work.
That moment feels like being hit with a bucket of icy water. To know that everything you’ve done wasn’t enough. I changed my diet to whole-food, plantbased. I stopped drinking alcohol. I cut out as much sugar and flour as I could. I did everything in the books upon books upon books regarding inflammation and pain. And it wasn’t enough. One year after the injury and I still can’t put weight on my hand. I can barely hold a pen. Pain comes at me from nowhere. Sometimes I wake up in pain and know that the day will probably be spent in bed, because my limbs feel so heavy and the pain is so intense that getting up and brushing my teeth sounds like climbing a mountain. I’ll have pain not just in my arm, but my shoulder, lower back, my right hip, and both legs.
I have setbacks all the time. I relapsed in August of 2020 and mentally fell apart. I felt like my life was over. It took the help of all my doctors, increasing medication doses, and another three nerve blocks to partially stabilize my nervous system. That relapse left me in a state of isolation so great, that I’ve never felt lonelier.
Between April and October, my hair stopped growing. Every time I saw my reflection in the mirror, I looked sick. My skin was dull; as though it too felt the pain I was in. My eyes constantly felt like they’d sunken into my skull. I was exhausted. Spent. Drained of energy.
The pain is still with me every day, though at least on good days the pain isn’t quite so intense.
It’s been over a year and I have yet to have a single day where I don’t experience pain. Sometimes it’s sharp, sometimes it’s a burning throb, something I feel like I’m getting hit with a hammer constantly.
So how does one continue living with severe chronic nerve pain?
I do it because I must.
CRPS has been labeled the suicide disease for a reason. People find themselves backed into a corner where the only thing they feel is pain. I greatly sympathize with that, but for me, giving up is not an option. It cannot be an option. I have too many things I haven’t done yet. I want a family, I want to travel, and I want to continue publishing books. My life cannot and will not be over.
I simply refuse.
It seems the stubbornness I’ve had my whole life is finally coming in handy.
I’m still learning how to navigate my life with CRPS. I have terrible brain fog and forget things all the time. I regularly have reminders on my phone telling me what to do that day. I have good days and bad days. I have extreme fatigue. Even the simplest things like going for a walk can sometimes be too much. I am heavily reliant on my family for meals. I have yet to be able to go grocery shopping without having a panic attack. The people, trying to drive the cart, putting fruits and veggies into a bag, trying to get the groceries from the cart into the car…it causes so much anxiety that I suddenly can’t breathe, and then I panic.
That is something very raw and new to me: panic. I panic over so many things that I never did before. I panic over driving too far. I panic whenever thinking about the future. I panic while trying to plan things. I panic all the freaking time. I know I need to work on this, but it’s going to take time.
I recognize that the panic is something I must conquer, for the sake of continuing to live.
So much of my life has changed in just one year. I’m trying to ride the wave and stay positive, but sometimes that wave crashes over me and pulls me under. Then I need a moment to catch my breath.
I have my eye on the Spero Clinic in Arkansas and hope to attend one day. They have an 84% remission rate, which is incredible! I know remission looks different for everyone, but I hope that between their treatments and my determination, I can come out of there far better than when I arrived.
Taking life day by day is the only way to survive, I suppose. Not getting ahead of myself and just embracing the good days and surviving the bad days. I’m hopeful that one day I will wake up with enough energy to do all the things I want to do. I’m hopeful that with more research on CRPS, doctors will come up with new and better treatments. I must always have hope, because hope is the only way to endure the pain.
Persist. Endure. Keep a tight grip on hope—it is all that anyone can ask of you.
Until next time, friends!