Hi Jayne,
I have to admit, I do live in some dread of the pain coming back, but because your PMs have encouraged me to try to think what to do, I have made some very interesting choices and changes in my life to "be prepared" physically..even though emotionally I will FREAK OUT, for a while. When I say I relate so much to you, I really really do. You are one of the few people who describes your pain in exactly the same way that I experience mine. When I would go to my arthritis support group for a while, they would talk about good and bad days, and I would look at them and wonder what they were talking about. Then when I could hardly function at all, I would meet other ASers that were out working full time. While others would look at me in fear because I had fused. I was horrifyed and couldn't understand what was happening. Some people thought I was faking it or just not trying hard enough to get on with my life, like the other people with AS or disabilities. It was a nightmare.I even started to doubt myself. My mother still wont deal with it and they wont deal with the possibility of the Rem. wearing off. Now I see, even from this sight, how a variety of AS exists. When you talk about your chronic unbelievable amounts of pain, I know exactly what you mean..and the whole escalating feeling.I admire you so much for carrying on despite all that pain. I am soooo sorry that we are bonded in this way, but at least I feel less alone, and it helps me to confirm that I am not just 'not trying hard enough', that As can get to our levels, and I too was doing the best that I could. On the other hand, thank-you for your generous good wishes towards me. I am staying positive and am on the NSD. I hope I can wring out some more time on the Remicade..I am at 2 years and 2 months.I am stepping up getting all my dreams in while it lasts. I also (unfortunately)have some real fear about lymphoma...but am trying to just go withit. I was very traumatized by my last round of pain..so all these anxieties just feed into each other. I try to just accept my feelings, and i try to accept some of the more awful realities about life. I certainly dont want to court disaster either though. I was wondering if I should get a load of antibiotics ready in the fridge to try that route, if need be. I admire your emotional honesty too, especially dealing with the anger. I have had trouble dealing with that but am getting alot better now. Anyway, thank-you for giving me hope Jayne. Keep fighting and getting out of that pain and all the best to your lovely family. I am here for you day or night. I hope youare in a beautiful place on vacation now.
Liz