havent heard from you in awhile. are you okay? hows the pain? is the med helping? im going to pain management on sept.3rd.until then i have to continue to deal with rhe constant pain. not really feeling well so i talk to you later
cathy
first, please don't feel alone! that is the worst feeling of all and we all feel it. Between the pain and the doctors that dish the news and walk away. I am on oral fentora which is a form of your drug and I am in constant pain also. Which makes everything even harder. They thought I had lupus and I didn't they were sure, and actually I was relieved to know there would be a name and hopefully a treatment to get me out of pain . I know that sounds very bad , but somehow with a name to a disease everyone treats you differently.
recently I was talking to a genetic scientist who has MS and she said that luckily there is so much research and money that every day the world she faces (which is very painful)looks more hopeful.
You have had a very hard life you must be a strong person but if you want someone to listen so you don't feel so alone, I am up all hours and I will keep checking to see if you are on. I just signed on so I don't know if we can go to a different place to talk.
I know that I have very close friends but when they are healthy and not in chronic pain it is hard for them to understand. I hope you don't think I am strange, it is just i can feel your pain and wish I could give you an answer, but the real answer will come when you make them repeat the test at a different time of the day.
I hope to hear from you .