CRPS/RSD is an awful disease that affects the entire nervous system. It's so underdiagnosed and usually takes years for a Doctor to make the diagnosis. It's a disease that causes so much pain and requires an entire lifestyle change. There is hope but not a cure. It requires a lifelong battle but you must keep fighting! I will keep up the fight..the disease will not win! I now have a great Doctor and in good hands. I have faith that this treatment will work!

Friday, September 18, 2009

Not a great week

Wow, today is Friday already. I just can't keep up with the days. What's weird is that it's not like I do a whole lot in my day but yet it still flys by. I don't even know what day it is half the time because most days are the same for me.

This week has sure been a bit tough since the bee sting. Monday and Tuesday I just knew something wasn't right. I was still having trouble breathing and wheezing quite a bit. My lungs HURT! I was itching like crazy still and I was swelling. My tongue was also swelling off and on which had me concerned. Monday night I had trouble swallowing. Tuesday I had the same trouble and felt I better call my Doctor. I called my allergist Wednesday morning and they had me come right in. The Doctor was very upset to hear that I was discharged from the hospital without the appropriate treatment. I had a SEVERE reaction as he put it and needed to be put on prednizone because once the epinephrine wears off, the reaction starts all over again (which it was doing). He told me that I should have used the epipen again sunday night or monday but I didn't know. I had terrible discharge instructions from the hospital. I received all kinds of instructions from the Doctor and medications to take. I now have an emergency sting kit also. This is a serious matter and it scares me a little. I don't want to go through this EVER again. I was told that each time I get stung, the reaction could get much much worse. YIKES! I have to be careful and I guess the bees are still out until October. I hope they stay away from me!

I'm getting somewhat frustrated now at this point. I am so tired of PAIN! It just never goes away. I am also tired of taking pills..medication..I'm so sick of it! I have to remember my meds everywhere I go. I just get tired of it all. Also, the medication is causing some weight gain. I was working so hard at losing weight before all this mess started. I was proud of myself and now I feel like I'm falling apart. I can't seem to do any exercise. Walking is about it and I can't even go to far before I get tired and the pain gets worse. I tried a few minutes on the Wii fit with some basic steps and it flared up the nerves! I was freaking out afterwards and had to try and calm everything down. I'm now sore today. The hardest part is not being able to do the things you want to do! I have always been an active person and sitting doing nothing is so not me! Also, I just can't sit..I'm uncomofortable sitting. I can't sit for long, stand for long, walk for long, etc...UGH! I can't win! I guess I'm a bit frustrated..sorry. I'm venting. I'm also upset because so many things flare the RSD. Certain foods, beverages, etc. Of course all the things I like. Caffeine is really getting it to flare so I try and avoid it now. Also spicy food are not good and I love spicy foods! Not fair! I'm having to pay attention to so many things and learn to change my life in so many ways. It's NOT easy but I'm doing it. I just hope I can get some relief from this nightmare.

I have officially been cleared for ketamine and I'm awaiting the call to give me a date. I will keep you posted as soon as I know when that will be.

I'm hoping this weekend will be a much better weekend!