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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I spent years sitting and crying and worried and in a lot of pain, (did not have diagnosis for 2 yrs) but between the drugs, Lyrica, Neurontin, Celebrex, Restoril and Elavil (you would think I would be a zoombie with all that but as long as a get lots of sleep, I do okay - I do terrible if I have a bad night) and the pool waterfit classes, I have the pain down to 20 - 30% of what it was with the odd flare to 50%. Anyway, after six years of working on my attitude and exercising as much as I can, I have finally learned to do what I can, give up what I cannot do and go out with those people who either understand or ignore the disability and accept me as a person. I am lucky that I have a power chair and a small scooter and I had my car adapted with hand controls (people on disability can get these things I think if they need them) so although I cannot walk far, go golfing, or hang an art show by myself, I still paint and trade off jobs with someone more able bodied if I am in a show - I handle the tickets at the door. I am volunteering as a Director of an Arts Council which entails a lot of meetings, computer work and lunches and some parties (I sit or take my chair). I travel (cruises with the little scooter), I belong to the Red Hatters which is a lot of laughs and with them I play poker and bridge and go out to dinner a lot and take my big power chair and go to their funventions which are cheaper than other types of vacations and a lot of fun - I use my chair around the hotel and to go shopping with the gals - there is usually another scooter there but if not that is okay. Going to ride on a trailer in the July lst parade. I also have season tickets to three different theatre groups and the ballet (take the chair there too) As I said I go to the pool three times a week which is very time consuming and keeps me in shape and it also acts as a desensitizer. I am not saying that it is easy to organize you life like this, it takes a lot of planning, but the alternative stinks and once you have it organized it just happens. If you like books, join a book club - take bridge lessons, painting lessons, poker lessons, computer lessons or anything else that interests you, and/or sign up as a volunteer with a group that really needs you, you may find that it helps deal with the pain to be busy, it keeps your mind off it to some degree. If you cannot do things like this because you are in too much pain I appologize, but I just know that until I started to re-organize my life and do the water therapy, I was a very unhappy person and I now feel quite fullfilled, sad sometimes, but not morbid the way I was. Hope these suggestions help. Take care - Laura.





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