Last Sunday my left upper leg started to “hurt” the way the rest of the ares where I have CRPS hurt. That deep bone pain, the unbelievable pressure, the burning that never ceases. It immediately alarmed me but I am really trying to practice mindfulness so I said to myself “Ok…lets just observe“. I’ve been getting brutal headaches and some migraines due to upping my IVIG dose and spending most of my time in bed so I did my best to just rest, do my mirror therapy, my phone app, and meditate.
By Wednesday it became very very clear that my CRPS has spread.
No one knows exactly why CRPS spreads. It happens in about 70% cases and frighteningly can spread to a person’s entire body including their internal organs. Full body CRPS is more rare but definitely happens. It can spread if you injure yourself. More often the spread happens for no particular reason moving up the same limb or same side of the body as the original injury. My CRPS started in my left foot 4 years ago, moved to my right pinky toe in April after I stubbed it, spread up to my left kneecap in May, and now has continued fairly rapidly to take over larger parts of my body.
Engulf is a great word for this.
I feel like I am stuck in an unending pulsing fire. I think of the wild fires in California burning fiercely and overtaking everything in it’s path leaving devastation wherever its flames touch. When I am able to remove myself some from the pain, I am wondrous at how these tiny microscopic nerves can produce such BIG tremendous sensations.
How can my body do this?
Thanksgiving was hard. I struggled to stay present at dinner and tried my best to not show how much pain I was in. It was frustrating to have so much gratitude for the life I have and yet feel so suffocated by how badly my body was feeling. I didn’t really let anyone know exactly how bad things were in hopes to not “ruin” the holiday. On Saturday things got worse. The CRPS reached my hipbone and began wrapping its way up part of my lower left back and side. My other hip began that familiar deep ache/burn.
I haven’t cried about this at all but when I called my pain dr in a bit of a panic, I began to cry.
I am scared.
I am afraid of it continuing to spread. I am afraid of it going certain places like my private parts or my face (I have other kinds of nerve pain in those places and it SUCKS) I am afraid of it going into one or more of my internal organs.
I am most afraid that nothing will ever make this better and that I will always be in this much pain and have to completely give up on being a mom.
I have been maintaining such a calm place of acceptance about the Calmare therapy. I didn’t want to get too emotionally invested so I wouldn’t be crushed if it didn’t work. Now that the CRPS has spread and my pain is even more intense and miserable I feel that desperation creeping in. I find myself saying “What am I going to do if this doesn’t work?”
I guess if this had to happen I am so grateful it is happening right before we begin a treatment that may change everything for me. I think I would be even more bereft had this happened with months to go in waiting for the Calmare and probably in a really bad place if there was no new treatment to try at all.
I start the Calmare in less than an hour. I feel little butterflies burst forth inside me every so often. I glance at my wheelchair and wonder if I will need it by the time these two weeks are over. I look over at my husband and hope he won’t be devastated if this doesn’t help.
A friend wrote this beautiful poem several years ago about her own battle with Lyme Disease and it has haunted me. Bits and pieces of it pop into my head at certain times when the pain is especially miserable. She was an incredible poet. This part resonates the most with me today.
“Holy is the body that keeps trying. Holy are the eyes that see
stars where there are none. Holy is the misfiring
nervous system, the sweat in December. Holy
is the walk, the pain, the hiccupped rhythm,
the breath, the stuck blood, the mind
whiteout, the salt, the shaking
voice, the bed, the wakeful night, the eight
blocks to the store, the fingers that grab the toilet paper
and drop the quarters. Holy is harmonized laughter,
the store clerk who bends to pick up the change.
Holy is every roused cell, the spitting
rain all eight blocks home, this body that
lives and lives and lives.”
–heather askeland, reconciliation
I will keep trying, body.
**title image by the amazing and incredible jewel peach.