Okay. I have an admission of guilt. My intentions of writing about all of my experiences with RSD/CRPS were good, but deep inside I knew I would never accomplish this impossible task. After all, I waited seventeen years before I even started. There are a lot of excuses, and I would be glad to share all of them with you. If I did that, however, I could probably spend the same amount of time writing about how RSD has affected my life.Like so many with this disease I have lost my career, my social life, my money, and my lovely personality. All right. I never had a lovely personality, but being in terrible pain hasn't helped mine!
Since mine stayed in my right ankle for years, before traveling upward and above my knee, I consider myself very fortunate. My foot doesn't turn blue as much any more, and the swelling I have is not as bad as it gets for many others.
It wasn't until 2009 that I fell on my right elbow, and had good ole CRPS type II settle in to my right arm. My arm had responded differently than my ankle. My ankle started with a deep aching kind of pain, swelling and blue discoloration. My arm had pain alright, but it was ultra-sensitive to touch of any kind and felt like a thousand bees were stinging me at the same time. I remember the day I paced through the house and told my husband I wanted to cut my arm off if the pain didn't stop. I meant it. I wanted to be knocked out, by any method! I hate pain medication, narcotics especially. Absolutely hate them because of the side effects. I have been offered methadone and oxycontin by my pain management doctors. I finally relented and started taking Percocet, only when the pain is almost unbearable. Like I said, I am one of the fortunate ones.
I only use my old-lady walker with wheels and a seat, occasionally. It comes in handy when there are no chairs available and when I want to embarrass my grown children. Standing any longer than a few minutes in one place causes my foot and leg to swell and starts the deep bone pain that only goes away with pain medication. As I said, I try to avoid that.
I broke my ankle once, a few years ago, and I thought it was RSD pain. This is common, I think, to blame any pain on this neuro-autoimmune disease. The pain was in my right ankle so it was a fair assumption. My orthopedic doc even thought it was, and was so concerned about my pain he was going to admit me to a hospital. Then, he decided to do an x-ray. Lo and behold I had a fractured ankle! I had broken it three weeks before the x-ray. He put a removable boot on me since he understood more about CRPS than most orthopedic surgeons.
So, that sums up enough of what has happened to me. Now, I can start my journal, which I know, honestly, that I won't keep current. It doesn't really matter. If someone happens along this way, and reads enough of my personal journey to make them realize they have the same disease, or if it makes them feel they are not alone with this thing, then it will have been worth my effort. That is about all I do these days. I try to spread awareness, educate by posting current research or clinical studies, or direct someone to the help they need. Hey! That's not a bad deal for a grumpy old woman.
