Looking Back To Our Roots

[tex]

Hi All,

Since we're beginning a brand new year, I thought that maybe it might be appropriate to look back to about 10 years ago, when one of the original visionaries who first initiated awareness of this disease on the internet, took that first step that caught the eye of some of the founding members here, which led to the creation of an internet support group, and eventually led to the development of the discussion and support board that we share today.

http://web.archive.org/web/200212030621 ... d/id9.html

As you can see, the disease presented when Sally was in her 40's - even back then, it wasn't a disease of "elderly females", as the medical community has been incorrectly claiming for so many years. Anyone here remember this? That was before my time, as I didn't join her board until July 4, 2004.

Sally was a true pioneer, and we all owe her a huge debt of gratitude for the inspiration and support that she provided. She proved that sharing experiences is the key to dealing with a disease that was not understood by the medical community.

Love,
Tex

[barbaranoela]

I posteda reference about your remembering our gal Sal---ABOVE--cus I couldnt find this one--
it was thanking U sooooooooooooooo much for your remembering Sally---and also how proud she has to be--of all that U have said of her---and still helping people

She is no doubt ----smiling at all of us~~~~~~

love to U Sally---missBN

thankss again Galahad--

Barbara

[Polly]

Tex,

It was so poignant reading about Sally's struggles. And I realized that progress HAS been made with MC, although there is still such a long way to go. Probably the only food antibody test Sally had done with Dr. Fine back then was gluten. (I don't think he had developed most of his other tests yet). And we didn't have enough experience then to know that it often took the GF diet 6-12 mo. or more to work. I think Sally told me she gave up on the GF diet after 6 mo. Of course, I'll bet she was multiply-intolerant, about which nothing was known at that time. Entocort was not yet available during her early years of struggle. She had horrible and prolonged prednisone damage and withdrawal, as severe as with controlled substances.

I think Sally might be alive today, if she had had the advantage of the newer info and therapies we have documented on this Board (that she started, of course). We know from her son that she suffered severe diarrhea even the day before she died last year, so there is a good chance she continued to have active disease most of her life. So very sad. But what a legacy she has left!!!!!!! Everyone in our family here who has been able to gain control of their MC (literally hundreds if not thousands) owes a debt of gratitude to our founder, Sally. And she was the one who set the family "tone" for this site - she always treated everyone with great love and respect. That's why I usually still sign off "Love, Polly" - it's a tribute to the way Sally always signed off. Gosh, I miss her.

Thanks for taking us back to our roots.

Love,

Polly

[JoAnn]

I didn't know Sally, but have obviously been blessed by her courage and willingness to reach out to others even though suffering greatly herself. I hope she knows I'm grateful to her and all of you who have carried on the work and mission of this board. JoAnn

[Joefnh]

I did not know the story about Sally,but what a struggle and pioneer. She certainly has helped many for which I am thankful.

Thanks you Sally and the other founding members of this board for developing it and keeping it going.

--Joe

[harma]

I also (of course) don't know Sally, I was very touched and impressed by her story and also feeling a lot of grieve and so sorry for her, she had suffer so much. That she had to miss, what we all have now here thanks to her. But what an outstanding lady, that she is the one who started all this!!! Thank you Sally!!! And thank you Tex for sharing her story her today. And thank you Polly and Barbara for sharing your memories of Sally with us. It helps us, who never have met sally, to get toknow her a bit better.

[Gloria]

Sally is an inspiration to all of us, even though not many of us knew her. I was able to read posts on the old board before it closed, and it was apparent that she had cultivated a feeling of community there. That sense of community/family has continued to this day on this board thanks to the veteran members who brought her vision here.

It's sad to read about her struggles; it makes me so grateful for the knowledge we have gained through sharing years of experience. The passage of time has helped also, as more GIs are slowly becoming aware that an IBS diagnosis is MC instead. It makes me wonder what treatment changes will take place over the next ten years.

Gloria

[tcorbett]

Tex,

Thanks for sharing the link about Sally! I had no idea about all this. What a horrible challenge she had to face! My heart broke for her as I read her journals. Makes my challenges seem so menial, why do I complain? What did Sally die from? How old was she? My heart goes out to her family - I am sure they have grown so much having such an amazing mother to lead them! I feel strengthened just hearing her story!

Thanks Polly for your insights too!

This is a wonderful place to be - I have a friend that needs this site, I am hoping she will come by soon! Her GI just has no idea what to do for her, she has decided she needs to take matters into her own hands - I told her this is where she needs to be!

Thanks to all who make this site possible!

Theresa

[tex]

Theresa,

Sally was only 68, when she died, a little over a year ago - too young to die, especially for someone so full of life. The cause of death was officially listed as a heart attack, but we have a hunch that her continuing CC symptoms, together with the accrued effects of years of treatments with powerful drugs, played a significant part in her health at that point

For anyone interested, here are some more memories of her:

http://www.perskyfarms.com/phpBB2/viewt ... sally+read

Tex

[Kari]

Sally - if you're the one responsible for "setting the tone" for this web forum, thank you from the bottom of my heart. You must have had an absolutely amazing spirit for it to live on so strongly through the people here. I read your story quite a while back, and it broke my heart then, and it breaks my heart now.

You've given us all a precious gift.



Love and gratitude,
Kari

P.S. Tex - thank you for bringing Sally to our attention on New Year's day.

[MBombardier]

Tex, thanks for posting this. I knew there had been an earlier board, or group, but I didn't know the details. Sally was a really special person and I am sorry that she is gone. My condolences to all of you who miss her so very much.

[Linda in BC]

Yes, Sally,

THANK YOU!

[grannyh]

I am sooo appreciative of the group Sally started.. it was there with hope for me when I was diagnosed. I was told there were only 800 cases in the world.. and it was a rare disease (2002).. and only hit old white women of northern European ancestry...

Thank you, Tex, for keeping this going. Your insights and research are so helpful and definitely things I would never find on my own.
grannyh

[MaggieRedwings]

Thank You Tex for posting this about Sally.

Sally was a true pioneer and I also believe that the powerful drugs had a big influence on the outcome of her life. I so remember her battle on the prednisone but also remember her faith in life and so honored her respect for life in general. Sally was one of a kind but I thank her daily in my prayers for giving birth to this family.

I loved Sally and still miss her so. The bag of lavender she sent me is still on my bedpost. To stay there forever.


Namaste, Maggie

[grannyh]

Because of all Sally went through with prednisone is the reason I refused to go that route. It is a shame so many GI docs still think it is the ONLY treatment.
grannyh