Reply To: throat collapsing, veins hurt!

June 25, 2012 at 3:05 am

hi bny—sorry to hear of all the recent stuff you have going on. Heat, stress, anxiety, doing too much, all make me feel worse. I think you are right on the hormone thing too—i feel worse when it is close to the time for my period. I thought probably because this is already an inflammatory disease and then we tend to get more inflammation around that time of the month????
As for accepting it—-I’d have to say i have not accepted it yet either and my diagnosis was 3 years ago. I dont think i will even begin to accept it until i have run out of options to treat it. As long as there are options still available I still have hope to beat it and will keep that hope until i have tried everything that is available for me. so dont feel you have to settle for being this way or that cidp is winning. You are responding to the ivig which shows that it is something immune related. PLUS…the ivig has only been your first treatment. You have other options available if you need to resort to them. Lori