“In yourself right now is all the place you’ve got.” Flannery O’Connor
On Tuesday, I sat there all day long fighting back the tears, or at least trying to fight them. Those words never get easier to hear.
This blog is a place of healing for myself, it’s my outlet. I come here to discover, I come here to think. There will come a day when I am on the other side of this that I will want to remember just how far I have come; so every step of the way I am going to share.
This week on Tuesday I had my second sympathetic nerve block for my CRPS. That afternoon I had a follow-up with my surgeon to discuss a few concerns as well as evaluate the wound on my heel at the incision.
For the heel, we are doing nothing. The only way to do anything would be another surgery which is the very last thing my body needs to go through and could likely cause more damage than any good. We will let my body heal naturally & see what happens with it.
A big concern is that fact that I am not able to walk yet. CRPS was winning in this battle. Because of this disease, I cannot handle touch; my foot is extremely sensitive. Air hurts my foot when I take off my sock! My sock has to be big for my foot so that it is not too tight or again, my nerves go crazy. The sensitivity & the pain it would cause, I cannot handle having my walking boot on for more than maybe 3 minutes & that is a stretch!
If I want full mobility back & do not want this horrible disease to take that from me, I have to get up & moving. My surgeon okayed a walking shoe as well as using my crutches or whatever it was I needed to put weight on it.
“It is going to get much worse before it gets better….IF it gets better at all.”
Those are not the words you want to keep hearing over & over again from your medical team. When you feel you are already barely living through the pain you have now knowing things are going to become that much worse is not comforting. Also, the uncertainty of this disease scares the heck out of me. There are no guarantees when it comes to this rare disease. To put it into perspective, here is the chart showing the levels of pain & the fact that CRPS is extremely painful & real.
Again, hearing the reality of my prognosis had the tears beginning to fall from my eyes. As my surgeon got ready to leave the room, he began to reach for my hand to shake it but instead pulled me in for a hug. It was at that moment that I realized I do have a really good team on my side right now that I trust in between him, my pain doctor & my physical therapist.
Yesterday I went to PT; I’m back with the therapist I have seen for over fifteen years. I knew if there was anyone to get me back on my feet it would be him.
Guess what? I took just a few steps in my walking shoe with a cane. It was the hardest thing ever & I am certain I was dripping in sweat. It actually took a lot of thought process to get it to move. We went through several other exercises, discussed what it is I need to do & what to expect. Yes, it was a horribly painful hour.
Not only am I fighting against this disease, but I also had major reconstruction surgery & nothing in my foot is the same. There is zero muscle in my left leg; my calf has shrunk to nothing.
I got home from work yesterday with so much on my mind after a week that had been very trying for many reasons. I was exhausted & really wanted to take a bottle of wine & crawl into bed at 5:30. But, I sat there for a moment staring out the window & realized this fight has got to come from within me & I cannot rely on everyone else to fight for me.
It has to come from within me. I have to fight like hell. I have to tell myself that things are going to worse & I have to fight through that. I have been through other periods of time in my life where I had to accept that things would get uglier before some day I could find something better than I could have ever imagined. Perhaps this is the same, although much harder.
So, I walked around my house in my special shoe with my one crutch. All night. Then, I had a glass of wine to celebrate as I climbed into my Epsom salt bath. 
Today, I am wearing jeans. I have lived in sweats & leggings for 11 weeks. My walking shoe goes on for a bit & I walk around with my one crutch. It’s incredibly painful. Sometimes, I have to give my nerves a time out & take the shoe off & put my foot up.
I consider this step one. I’m here at step one & I will fight through the worse part in hopes that soon I can find even a small piece of “better.”
Until Next Time~
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