Post by jeffn on Dec 6, 2009 8:40:43 GMT -5
I too early on visited the two sites Sherion mentioned. I had just been DXd and googled Scleroderma and the international site came up. I read the rules about all the things you could not speak about and when I got into the site I just not see it being particularly helpful, for me anyway. I quickly ended up at the old SDF board and RBF.
Whatever sites anyone finds comfort in is a good thing. I think it is all very personal.
Peggy I take your point about trying to give back and be helpful. I'm glad you are out there on this and other boards helping folks. I have found that for me as I begin to feel better and get by the life interrupted phase I have less time. I am an AP guy and will make no apologies for that. I came to AP pretty quickly after DX and fortunately it worked for me and I have not been on any other common SD treatments. Because of that I have little experience with those other treatments. So I can't really comment on the effects of those treatments. There are many things I don't like about inspire, so I just don't go there much anymore. I usually check it out once a week or so and it usually looks like the same stuff from the week before just different names. The churn rate there appears to be very high perhaps due to being tied into such a large health related site. Some appear to be "shopping" for a disease. A few months ago there was a post from someone who thought their dog might have SD.
I think there was a group that was very happy with the move from SDF to inspire but I feel they gave up a lot of substance with the move. As I noted in my earlier post I am glad there are old hands there encouraging the new people with lots of Sclero info and also there is group of APers trying to spread the word there too. I just for many reasons have found for my well being I have to limit where I go and how much I contribute site wise. Creating your new support group from International expatriates is a great move. Similar folks with similar concerns and interests, Got to be very helpful and very supportive for those participating. Where ever people find the support and info they need is good be it emailing friends, International, Inspire, RBF, here, or any place. Support is where you find it.
Whatever sites anyone finds comfort in is a good thing. I think it is all very personal.
Peggy I take your point about trying to give back and be helpful. I'm glad you are out there on this and other boards helping folks. I have found that for me as I begin to feel better and get by the life interrupted phase I have less time. I am an AP guy and will make no apologies for that. I came to AP pretty quickly after DX and fortunately it worked for me and I have not been on any other common SD treatments. Because of that I have little experience with those other treatments. So I can't really comment on the effects of those treatments. There are many things I don't like about inspire, so I just don't go there much anymore. I usually check it out once a week or so and it usually looks like the same stuff from the week before just different names. The churn rate there appears to be very high perhaps due to being tied into such a large health related site. Some appear to be "shopping" for a disease. A few months ago there was a post from someone who thought their dog might have SD.
I think there was a group that was very happy with the move from SDF to inspire but I feel they gave up a lot of substance with the move. As I noted in my earlier post I am glad there are old hands there encouraging the new people with lots of Sclero info and also there is group of APers trying to spread the word there too. I just for many reasons have found for my well being I have to limit where I go and how much I contribute site wise. Creating your new support group from International expatriates is a great move. Similar folks with similar concerns and interests, Got to be very helpful and very supportive for those participating. Where ever people find the support and info they need is good be it emailing friends, International, Inspire, RBF, here, or any place. Support is where you find it.
