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October 8, 2009 at 1:50 pm #335592JeffNParticipant
You are certainly being a good sport about this Cheryl. I am curious about the article, without any mention of treatment did it become a piece about “quality of life”? Do they attribute her recovery to spontaneous remission? I would like to read the article but there does not appear to be a link to it on the SF site and I am not subscribing.
October 8, 2009 at 9:03 pm #335593Conniel7777ParticipantMakes me wonder if that whole foundation is not backed / funded by the drug companies, and if it isnt used – in some way – as a “selling front” for all of their medications??
No money in prescribing antibiotics, so they wont promote it. I dont care what *anyone* says to me, I will never be convinced of anything else.
Its the same reason nobody promotes certain types of diets – MINUS prescription medications – to actually CURE / REVERSE heart disease, diabetes, etc.. ( like the Dean Ornish or John McDougall diets ) because where is the MONEY- the PAYOFF – The GREENBACKS – the KICKBACKS- in telling a patient to put down the sausage and eat a carrot instead? nope.. never gonna happen… no money in that for the drug companies, the doctors, nothing.. instead, they tell the patient to eat “less” saussage and also take a cholesterol lowering drug along w/ some insulin, at oh, $500.00 per month? ( not to mention things like glucose test strips alone, which for some brands are nearly a DOLLAR A PEICE, and if you test 5 or 6 times a day.. hello?? ) ( and before I get flamed, and I hope i dont, but before I do, YES, I have personal experience with these issues, so i am not speaking blindly here )
Sorry, I got off on a rant there…
When the day comes that some drug company can create some new “miracle” anti-biotic that works better than the current ones, and then they get a 20 year patent on it, THEN and ONLY THEN will we see drug companies touting that they discovered a “new” and “Safe” “miracle” cure / treatment for autoimmune problems… and you can bet the price will be WAY, WAAAY up there….
I am having a really hard time containing my anger here……. :headbang:
Bottom line: amount of money to be made from healthy people who dont need expensive drugs, therapies or treatments = ZERO
Amount of money to be made from sick people = Billions upon billions upon billions
Remember, its called the “Healthcare I N D U S T R Y” for a reason.
When I was first diagnosed, I found the board for that “foundation” ( I wont even type it because it sickens me to glorify their name ) and all anyone there talked about was what debilitating – and SUPER EXPENSIVE – drugs they were taking, and they all compared their various levels of deterioration.. it was like “Oh, I took toxic drug XYZ today and my ___ ( insert body part ) fell off / stopped functioning.. how about you?”
Like somebody else on this board said — was it Lynnie? — I told myself “THATS NOT MY ROAD!!” and I googled “Scleroderma success stories” and thats what brought me here, and to Cheryl and Jess' story.. and I spoke w/ Cheryl on the phone that day – THANK GOD I DID – and I am here to stay.
I really have to stop typing now, because the more I type the more blanking blanked off I get!
Now I need chocolate. LOW FAT, VEGAN Chocolate….
October 8, 2009 at 10:42 pm #335594Cheryl FKeymasterConnie,
Your post made me laugh, thanks for your rant, most of us share your frustration with the lack of support for this effective therapy.
Jeff:
The magazine editor sent Jess 12 copies, PM me your mailing address and I will mail you one. I have not seen it yet either.
Anyone else want a copy, PM you address, first come first served. I should have about 8 extra copies.
Cheryl
October 8, 2009 at 11:30 pm #335595SandiSParticipantConnie,
Thanks so much for your rant. My husband has to listen to me ever so often. Nice to hear someone else saying it for a change. Next time will be my turn.
sandi
October 8, 2009 at 11:38 pm #335596richieParticipantHi-Its not a conspiracy –their medical advisory board can not reverse their position –to do so would acknowledge that they have been wrong all these years —the 60 % mortality figure comes from somewheres -=-a good place to start looking is right at the Sd Foundation –its their approach that is producing these statistics –shame on them !!!!!
richie
October 8, 2009 at 11:43 pm #335597JeffNParticipantCheryl – PMd you.
October 9, 2009 at 5:27 am #335598richieParticipantHi-Put down sausage ??-thats one of lifes pleasures !!!Especially with onions and peppers !!!!
richie
October 9, 2009 at 3:08 pm #335599Conniel7777ParticipantRichie,
LOL! being an Italian from New Jersey, I agree! Nothing like a good old, sausage-peppers-and onions on an italian roll from the boardwalk, or a carnival.. or anywhere!
October 9, 2009 at 3:09 pm #335600Conniel7777ParticipantSandi,
My fiance had to listen to it from me yesterday as well!
October 9, 2009 at 3:12 pm #335601Conniel7777ParticipantCheryl,
I know getting mad really does no good, but I have to say i am amazed at how calm you are! Kudos for having a level head!
I know one thing for sure: I am going to stay away from that “foundation” and anything they have their hand in.
October 9, 2009 at 4:50 pm #335602Lynne G.SDParticipantI am dying to know what the article said.I don't get their magazine.What did they chalk up her remission to????? Is there anywhere online that I could read it?
LynneOctober 11, 2009 at 11:30 am #335603mikanaParticipantCheryl, pm'd you also.
When I told Mike about this he reply was
“I would expect this in the Kennedy Assassination but not Jessie's story” :angry:
By the way he is an assassination “expert” 😉
October 11, 2009 at 4:05 pm #335604TischSEBParticipantI agree – with the rant and the sausage!
Tisch
October 13, 2009 at 1:43 am #335605rebeccaavazianParticipantIm not surprised one bit…but we need to move on and not let this anger turn in to stress its not good for our health. We just need to continue our Road Back to health and help whomever we can reach along the way. I would have NEVER been on AP if it wasnt for talking to Cheryl F. and I am soooo grateful for her help. We need to stay strong and keep typing, talking, and sharing on this board and people will find us. Now, Lets take a deep breathe.
October 18, 2009 at 4:41 pm #335606Margaret MuellerParticipantCheryl, you have such a remarkable attitude.
I don't think there is any question that the SDF has an organic problem with AP. They don't mention it anywhere on their website. Their board members don't mention it either.
I wonder sometimes what would be an effective strategy to get them to at least discuss it. There has to be an unwritten policy within the organization that no one ever discusses AP. What is the downside for the organization? Would the doctors they interview suddenly stop taking their calls? To they receive financial support from the pharmaceutical companies? They don't actually raise that much money for research, do they? Would writing letters to their individual board members asking why AP isn't on the table elicit a response?
These are the things that rattle around in my gradually un-fogging brain.
I have tried to be a presence on the inspire site, but it is soooo depressing.
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