We hope you feel better

December 24, 2008 at 8:22 pm

I would like to add to others the wishes that you feel better in body and in spirit. Regarding replys, you know from looking toward the outside that this is a really busy time of year and many of us spend all the energy we possibly can on our immediate family, friends, and those around us. this does not excuse that few people responded to you, but as Jim said, all the postings are down.
I would also like to gently say looking toward the inside that I think there are many of us that need help, support, encouragement but are not the quite as adept at asking as we might be at giving support. I know for one, that the more I need something, the less it often shows because I am so used to being self sufficient and taking care of others. One reason I say this is that these last few months seem especially hard for you. There are lots of obvious reasons for this–you have had fevers and the pericarditis and not felt well. My sense, that could be wrong, is, though, that there is a sadness and need bigger than that. You mention memories that the ambulance ride and going to the same hospital brought back. The reason that I say this are 1) to point out that if some of the worry and sadness is fear about relapse and vulnerability with illness or if it is that the shadow of a very scarey time in your life when first you were diagnosed with this are part of the present, we are a group that can understand and relate to it if we understand a little better how to better support you. the second little point is to say that the problems with online support groups are thoughts scatter and since this is as hard as it is right now, it might help a little to have someone to talk to that could only focus on you and help you to pull back forward all the ways that have helped you cope in the past or a friend that can just listen about how bad you feel right now. I think that it would really help me sometimes to take 30 minutes and just be able to say (and cry, but I’m a woman) about how life has changed and my worries have changed. I could not do it for more than 30 minutes and I could not ask anyone to listen for more than that, but there are a lot of things that do get locked inside through the process of working so hard to be strong and brave that so many of us do.
Again, I may be off base, but this is what my heart hears–sadness and lonliness and fear that the past will repeat itself.

Since I am better at practical than the emotional, I have one other tiny suggestion. Are you on an anti-inflammatory medicine like indomethacin or naprosyn (or aspirin, even). Sometimes doctors also give steroids for pericarditis cautiously for their anti-inflammatory actions. If you are not on any of these, ask your doctor is an anti-inflammatory might help you with pain and the inflammation. Sometimes when a person has an GBS/CIDP or is other medicines, these are to thought of as much because of concern about complicating the picture of the neurologic disease, but NSAIDS are less a concern than steroids.

Finally, I hope you feel better in health and in spirit in the rest of these holidays and in the coming year.
WithHope for a cure of these diseases.