Thank you for your help with my patch issue. It was very scary to ne to see how dependent I am on the patch. Without the correct amount of medicine I was 100% non functional. I couldn't sit, walk, sleep or eat because of the pain. It is really scary because my disease has progressed and the patch was covering up alot of the new issues. I also am nervous because I feel vulnerable as I know this can happen again in the future and I truly felt like I was dying..the pain was the worse I have ever felt. I guess there is no such thing as having a stable case with this disease. One day you are at your normal baseline and the next your pain is double your baseline. Why does that happen? I hate these meds (tried everything to get off of them) but without them Im bed ridden. With them I can walk, swim, wakeboard (although after wake boarding I can't walk for 24hrs but it's so worth it).

I definitly agree that this group is my salvation. It truly has helped me because Before I found this group I felt so alone and I don't like telling my family how bad it can get...I don't want to worry them or have this disease take over their lives too. With that being said, I'm sadden to know that there are others that suffer this unrlentless pain and I wish we all met under better circumstances. I truly have love for this group and wish I could do more than offer a couple of sentences during their time of need. It would be awesome if one day in the future we could all meet but I know how hard traveling is on us all but I still would love it. Thank you again everyone and I hope everyone is having a decent day.
Sarah