)My goodness Clare,
Thats very interesting. Ive read quite a few pages and WOW. Ive ended up crying reading it. Bits on Fybromyalgia and SLE which I apparently have.
Its all there.... and somebody knows. It made me cry I suppose because its been so long... telling people all that is just there in the text. How comes nobody knew?
All the feelings and symptoms I have are there..
Somebody obviously knows how I feel. Its amazing and after all this time.
I still feel guilty and a fraud for feeling like this. But obviously that is normal too.
I cant thank this site enough for helping me so much to learn about this strange disease Ive probably had for a long long time.
The only trouble is I now feel I know so much more than anyone that is treating me.
Id maybe like to see a real Lupus specialist one day. Then I wouldnt feel such a moaner and guilty that I dont do enough or dont cope well enough.
Anyway thanks for that post. I will perhaps buy the book... but I might wait a while until I feel a little stronger to take it all in. It just frustrates me that its all there in black and white and the times I felt such a whinger and a moaner because nobody knew what was wrong with me.
Im sure if I was a rheumatologist and I had someone in hospital for hydrotherapy to help joint mobility and they had had it for 12 years or more with chronic mouth ulcers, bleeding gums..hair loss.. muscle weakness.. bad sleeping.. allergy rashes.. and very minimal joint damage ... Id think.. arghh.. should I test for Lupus?
Lol dont I go on :sad:
Cheers Clare
Luv Sal xx
Thats very interesting. Ive read quite a few pages and WOW. Ive ended up crying reading it. Bits on Fybromyalgia and SLE which I apparently have.
Its all there.... and somebody knows. It made me cry I suppose because its been so long... telling people all that is just there in the text. How comes nobody knew?
All the feelings and symptoms I have are there..
Somebody obviously knows how I feel. Its amazing and after all this time.
I still feel guilty and a fraud for feeling like this. But obviously that is normal too.
I cant thank this site enough for helping me so much to learn about this strange disease Ive probably had for a long long time.
The only trouble is I now feel I know so much more than anyone that is treating me.
Id maybe like to see a real Lupus specialist one day. Then I wouldnt feel such a moaner and guilty that I dont do enough or dont cope well enough.
Anyway thanks for that post. I will perhaps buy the book... but I might wait a while until I feel a little stronger to take it all in. It just frustrates me that its all there in black and white and the times I felt such a whinger and a moaner because nobody knew what was wrong with me.
Im sure if I was a rheumatologist and I had someone in hospital for hydrotherapy to help joint mobility and they had had it for 12 years or more with chronic mouth ulcers, bleeding gums..hair loss.. muscle weakness.. bad sleeping.. allergy rashes.. and very minimal joint damage ... Id think.. arghh.. should I test for Lupus?
Lol dont I go on :sad:
Cheers Clare
Luv Sal xx
