I am very surprised and disappointed that nobody with the desease asked to talk with these people from Grand Falls. Do they really want to be cured? I wonder... Maybe we are still waiting for 'the miracle drug' ?
Another brief resume of my friend's 'progresses' with scleroderma. I think she has been diagnosed with the disease for more than six years now. I go visit her when I am not in the mood to pass judgments on her condition and what is being done for her. I just go to visit. She is not progressing at all, but it seems her internal organs are still intact. She tells me her medications are getting stronger and stronger (mostly for the pain I gather). 5 years ago she could at least go out once in a while to do her groceries. Now because of her medications she can't even go in the sun and we now know how beneficial the sun is to the body and mind. (http://www.newstarget.com/001520.html , http://www.usatoday.com/news/health/2004-03-02-sunlight-pain_x.htm etc...)
She does not have much of a 'quality of life' (at least according to most people). She never goes out and she sleeps a lot and tells me she does not even have the strenght to make phone calls. She told me that its been 2 years now she havn't seen her doctor. Nurses comes in every 6 months for blood tests and she still depends on medication for pain etc. That's it! One good thing she has going for her are massages that a friend gives her on a regular basis. She used to read a lot, but she tells me she does not have the strenght to read anymore. The couple from Grand Falls that I talked to you about in a previous thread visited her. She was quite impressed with them and really appreciated their visit. Being their first visit, they did not go into too many details about the diet etc... It would be too much of a drastic change for her to talk about how they cured or at least got scleroderma under control. First thing my friend would have to do is to forget about all the drugs she is putting in her body and I can understand she is scared of doing that. I would probably do the same thing if I was in her place and had to deal with all that pain.
I guest the best approach for me would be to react as soon as possible while there is still some energy left to get all the information there is about building a strong immune system, learn more about the diet etc... There is a lot of good info out there. When there is no more strenght I can understand the only thing to do is rely on drugs. We can't even rely on doctors anymore. Even though most of them are well intentioned, they are too busy....
I went to see her yesterday. She is not doing well, still on medications etc... She doesn't even go to the telephone. She did call me for my birthday, but the day after because she was not feeling well on my birthday. She never uses the Internet. She is mostly in bed but the doctor told her she has to walk as much as she can. She accompanied me to the door yesterday as I was leaving but sat on the steps. She has lots of pains and takes strong medication.
As for the one in Grand Falls who was worse than her. I heard she is doing well but her husband told me that 90% depends on her diet which is very natural and organic. The weather influences her, but they go to Arizona in winter times where the weather is dry. She never takes chemical pills etc... and seems to have lots of energy.