There are so many things that I used to take for granted.
The other night I was able to have Steven take me by wheelchair out to the back porch. It was the first time since this whole mess began that I was able to see the stars. They were unbelievably beautiful, and came complete with an almost full moon.
Sitting out there in the fresh air was amazing. I’ve really missed moments like that.
Right now I’m stuck in limbo with my treatments. I’m still waiting for everything to get approved in order to start the Complex Regional Pain Syndrome (CRPS) rehabilitation program at the Rehabilitation Institute of Washington. I am really hopeful that once I’m able to start the program, I will be well on my way to remission.
Every day is a battle with this condition.
I’ve been dealing with severe, debilitating nausea. It has been difficult to keep down more than popped rice crackers and Powerade. On top of that, I’ve been having my first migraines in years, and chronic constipation. It has been unbelievably miserable.
Originally, my goal was to wait until I started feeling a bit better to write another article, but I finally came to the realization that it is possible that I will not feel better for a long time. Writing has been my one release throughout this whole experience, and that is not something that I want to lose.
For the first time, I’m very happy with the doctors and care that I’m getting. I have a doctor strictly for my pain management, and a doctor for all of the side effects of the medication and other symptoms of CRPS that I have. This is the first time that I have not had to go to the ER to get treatment. It has been a huge relief.
One of the new things that I have had to deal with is the start of pressure sores. I’m really lucky that they are not open yet. I get the opportunity now to try and get them to heal before they turn into a bigger problem.
Unfortunately, I have not been healing well either. It seems every time something starts to get the slightest bit better, five other things get worse at the same time. The pressure sores are pretty painful, but nothing compared to the pain in my legs. Right now, my whole focus has been on staying healthy enough to be able to start the program the moment it is approved.
I have put so much faith in this program working. I’m going to be crushed if I’m not in remission by the end of it. Even if I reach remission, I’m going to have to be careful for the rest of my life. If I don’t, well then at least I will be able to adjust.
I just want to know for sure. I would love to have a firm and definite prognosis. To have some sort of closure on a disease with no end is a strange thing to want. But it’s the only thing that keeps me going forward.
Amanda Siebe lives in Seattle, Washington with her husband and son. She writes about her daily battle with chronic pain and CRPS in her blog “Life in Pain.”
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.