Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Thanks Karyn! I am so blessed to have found this site! It has been lonely for me as I have not wanted to burden my friends...and family with my fears. Thank you for giving me a place to be myself, to talk, and learn about this illness. Paints > Hello all, > > This is a short note to welcome the 4 new members that joined JUST today. Be > sure and say hello. I am so sorry that there are so many people who keep > getting diagnosed. Although, many new members have had this disease for many > years, and are only new to the PAI. I am eager to get to meet you, as I am > sure you have much to share. > > Today has been very busy, and I have not had a chance to read all my email or > answer them all. Please do know that your inquiries and other mail have been > received. > > I will be going over top the hospital tomorrow to meet with some of the > speakers, and check on the conference room arrangements. I want to see what > the exact seating arrangements are, as there are different configurations > based on chair placements. Unlike most Symposiums, we have seats and desks to > make it easier to take notes, etc. This limits the seating capacity, but we > feel it is important. > > I will certainly get all my email caught up tomorrow. > > Blessings, > > Karyn , RN > Executive Director, PAI > Symposium August 28 & 29, 2003 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2006 Report Share Posted January 26, 2006 I want to welcome Wanda who like me is a new member. Also thank you all for your help about SSI information. Well, since I have been diagnosed with Mitochondrial disease by phone, I went to see my neuro. doctor today. He told me I have MELAS syndrome. We talked. And alot of his answers to my questions like pain, breathing, etc. went with a reply like, not much we can do. We could try a few things. Or I have no answer for that. And I had informed him how do I react to this disease, do I keep pushing when the pain begins, or keep trying to ignore my symptoms till I can't move. Well he told me the state that I am in, my body is in, is more like it. That I should do basically nothing, because it hurts almost immediately upon movement and that I should now start using a wheel chair or scooter to get around. I left there feeling very blue. I avoided giving in to this disease the best I could. Fought it all the way. It was becoming harder and harder. He told me I was only doing more harm. We are working on some other issues and which way to go. But I guess I have to give in now and go the wheelchair route. How did most of you come about accepting this disease and what it has done to you? Quote Link to comment Share on other sites More sharing options...
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