Hi all,
I hope that I remember what ya'll wrote so that I can hopefully touch on all of it. Sure do hope so.
My hubby built me a thing to keep the sheet & blankets off my leg because my insurance wouldnt pay for me to get one, which doesnt surprise me---I guess that its considered a luxury.
I found another great website about crps---its rsdhope.org they also have tons of information about it. I even printed out some of that to show the doctor but hes not interested in that at all---not sure why. I dont know if its because I found it on my own or that I wont let him talk me into that stupid SCS.
I dont know if I said before or not but I had rsd in my right ankle 7 years ago. Went thru the casting & the nerve blocks---the last one I had made my toes forever numb in my right foot, but atleast I was able to walk. Then I think that it spread to my already bad back & then my left knee, so obviouosly my health over the past 7 years has gone down hill.
I read on the rsdhope.org website & in neurology now how nerver blocks for crps are the worst things that you can do, besides that Ive already had 14 sets of them & Im not having anymore. The first doc that did the nerve blocks told me that I shouldnt have anymore than 3 & he did 7 of them. Guess he forgot what he told me. lol lol
I also know 2 people that have the SCS & they are against it big time. One is one of the nurses that come to my house, she said that she would rather leave it implanted in her rather than go thru the surgery of having it removed & it hasnt worked in a long time. The other says that it makes him flop around like a fish---& thats one thing that I definitely dont need.
I also meant to ask you all if you have spasms? I get them so bad that it makes you want to scream. I get them more frequently when it rains.
I live in Tn & Ive typed in my zip code trying to find a doctor that specializes in crps----the closet one---right now I cant remember where it is, but I know that its not close. Riding in the car is shear agony for me. Hubby made me a cushion for my leg, so that the bumps arent as bad, & I ride in the back seat, havent been in the front seat since the morning of my accident.
I know that amputation is drastic----Ive been doing research on it & it says that its the worst thing to do, but sometimes I wonder if the phantom pain is as bad as what I go thru especially on rainy days. I wish that I could just remove my leg & put it in a corner for being so dang gone bad & causing me so much pain, but I know thats not realistic, but sometimes I sure do wish that I could.
I really appreciate the prayers & the well wishes from all of you, I cant tell you how much it means to me. I just wish that my family would be offering the support to me that ya'll are. I cant tell you what that would mean to me. I just dont know why they dont understand. Before this injury we all talked on a regular basis---whether it was on the phone or email, but now its like pulling teeth from an elephant---it just doesnt happen. Maybe one of these days they will surprise me & actually call to see how Im doing---not that Im going to hold my breath for that to happen---I would probably turn blue first.
I hope that ya'll had a good weekend & that you had good weather. NO rain today but chilly.
I guess thats about all I know for now, I really hope that I touched on what everyone wrote---if not Im sorry & will go back to see who I left out. Hope to hear from you soon.
Thanks again.
Janet