Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Dear M, I know the feeling. We all do. It isn't much solice, but I want you to know that as long as I am able to, I plan to keep this group going and working to find the treatment to finally put an end to this nasty demon. The group is nearly a year old now. In my innocence I thought we'd have it figured out by now. I am still waiting for the " news alerts " on EN. None so far. This tells me we are the " forgotten disorder " . Still, one never knows what will come in tomorrow's mail. I'm really sorry, M. Shins up! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Thanks, . . . the 'shins up' made me smile =) Maybe that should be our motto! Trying to stay positive . . . but there's no 'positive' in going back on the pred . . . I feel like it's going to kill me . . . I just don't want to do it . . . Thanks again . . . going to bed now, don't want to think anymore. M > Dear M, > > I know the feeling. We all do. > > It isn't much solice, but I want you to know that as long as I am able > to, I plan to keep this group going and working to find the treatment > to finally put an end to this nasty demon. > > The group is nearly a year old now. In my innocence I thought we'd > have it figured out by now. > > I am still waiting for the " news alerts " on EN. None so far. This > tells me we are the " forgotten disorder " . Still, one never knows what > will come in tomorrow's mail. > > I'm really sorry, M. > Shins up! > Love, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 (((M))), sorry to hear you are having another bout of EN. Remember to take it easy and rest up. That does seem to help me out lately. Zoo > I noticed today small red dots, about the size of a pencil eraser and > smaller, inside the purple bruises . . . and there are new lumps > forming under the bruises . . . > > I'm just devastated =( > > M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 Hi Zoo, Yes, I'm on 5 drops, 3x/day still. I almost upped it to 6 myself this morning . . . but didn't. I don't know if I'll call the doc today. I'd like to enjoy this holiday weekend WITHOUT prednisone! The spots don't seem so red this morning . . . but I'm pretty sure there's a new lump near a cluster of old ones on my lower right calf = ( I'll see how the day progresses. I've got wierd pangs of pain in my forearms and hands . . . as well as feet. I'm thinking that's lack o'pred . . . or it could be the onset of the new lumps . . . I don't know, I give up trying to figure this stuff out. Thanks for your kind words. Have a great day! M > > > Dear M, > > > > > > I know the feeling. We all do. > > > > > > It isn't much solice, but I want you to know that as long as I am > > able > > > to, I plan to keep this group going and working to find the > > treatment > > > to finally put an end to this nasty demon. > > > > > > The group is nearly a year old now. In my innocence I thought we'd > > > have it figured out by now. > > > > > > I am still waiting for the " news alerts " on EN. None so far. This > > > tells me we are the " forgotten disorder " . Still, one never knows > > what > > > will come in tomorrow's mail. > > > > > > I'm really sorry, M. > > > Shins up! > > > Love, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 --- mwb42864 wrote: > I noticed today small red dots, about the size of a > pencil eraser and > smaller, inside the purple bruises . . . and there > are new lumps > forming under the bruises . . . > > I'm just devastated =( > > M I am sorry to hear this! Terri Quote Link to comment Share on other sites More sharing options...
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