***Before I begin this entry, I must say a larger than life thank you to Sophie, a brilliant, loving woman and a great great friend. I would advise everyone to read her comment on my last post just to see how lovely of a woman she is. Sophie, you have been a great catalyst in my recovery process, and I could never thank you enough.
I haven't written in a few days because I have been having some full body pain that includes my arms. The pain is mainly sensitivity that is accompanied by a great aching feeling. A HUGE apology to any e-mails that I have yet to reply to :-(
Okay, so updates... A week or so ago, my father sent my high resolution MRI's that I received at HSS to a very respected doctor to take a look at. He, in turn, sent them out to Stanford to have some former colleagues take a look at them. Each doctor agreed that the scar tissue in my right foot IS impinging my nerve, and that it needs to be removed if I ever hope to be in remission (which was an uncertainty again by the time I entered the hospital in April) as opposed to just covering up my symptoms. Well, this means that we have to sit down with my surgeon this Friday morning to decide whether or not we should have the surgery first or have the SCS put in first. It would be a great idea to put the SCS on hold and not put a foreign object in my abdomen/spine if my RSD can be eradicated without it. Decisions, decisions...
It's so easy to catastrophize with this disease because of it's uncertainty, but I fight every moment to not create that unwanted stress. I trust McDreamy, and will wait to hear his decision on Friday rather than catastrophize my way through the next week. I purchased the only RSD book I could find in bookstores this past week, Living with RSDS: Your Guide to Coping with Reflex Sympathetic Dystrophy Sydrome. I thought it could be fun to read. Education is very very important when you have a chronic illness. I would advise everyone in similar positions to research until you cannot research anymore. It will certainly help with coping, treatment, and management of your illness and can help you gain a sense of healthy control over your life.
1 comment:
many hugs my friend. You're doing very, very well. My thoughts are with you as you try the surgery and this new device (that I'm totally unfamiliar with).
If you ever need me, you know where to find me.
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