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Ronald2 (3/8/2010)
Ya, I still think it's a strange article to have in and arthritis magazine, it's kinda like in a amercan dental magazine-if something like that exists, ha, but would they run an article of "I don't believe in putting toothpastes and mouthwashes in my pure mouth, I never brush my teeth or floss and no poisioness fillings, my mouth is too pure for that, I just eat rough foods to scrub away debris from my teeth" I mean really would a dental mag print a feel good story like that? kinda a dumb example I used but gives pretty much same viewpoint of the arthritis article-to go against standard practices etc.
It seems like toothpaste and flouride have much better track record for preventing cavities for most of the population, while RA patients have to got through a lot of trial and error to find what will help them.
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Hi, Suzanne, that's why I said its kinda a dumb example, ha, but I was just thinking of a same viewpoint of hers to another medical issue and would that medical conditions magazine print an article like that, I really doubt it. I still can't get over the "my body is pure" like the rest of us with RA are just non-caring about our own health, we fill our bodies with junk and that's why we are not doing as good as holier than thoust is.
Arava-Prednisone-Mobic-Daily Vitamin-and Vitamin D-Calcium.
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Ronald2 (3/8/2010)
I still can't get over the "my body is pure" like the rest of us with RA are just non-caring about our own health, we fill our bodies with junk and that's why we are not doing as good as holier than thoust is.
When I see stuff like that, I just try to remember that it probably helps that person to feel that way, that they are making themselves 'pure', that they are in control of that aspect of their life and it makes them feel better.
My daughter was under age two when she got sick, so I know poor diet had nothing to do with her disease. But diet change does help a lot of people feel better, and I'm happy for anyone who feels better!
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Thanks to Jay for this post. A Facebook friend posted the link of the Beachcomber article. Then I saw Jay's post there which led me here. I agree w/ Jay & most all of you who say it is such a disservice to us.
I have discussed this "PR" problem with RA on my blog & the Arthritis Foundation's role in it really has puzzled me.
In case anyone's interested in this issue, here are a couple of links: Woman's Day RA article, ABC News article, AF article about RA and hypochondria. I have just joined this board today when I was sent the link. If you would like to friend or message me with a reply that's fine. Or just leave a comment on my blog & I'll reply.
Have a good day.
Kelly 
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I found the article very discouraging. It does seem more "feel good" than realistic. I think that is Sandy though. She's on my facebook and while she does write a bit about RA, it's in an almost detached, not in the trenches, type of way. I think she is very sweet, but I'm not sure she is the best subject material for A.T. that most of us seem to need. I don't want doom and gloom but I do want realistic. I want to know how others cope when they can't even open the front door to their home, or open their pill box, or lift a glass of juice by themselves on some days and other days can do their jobs, take a walk, and still feel like cooking dinner for the family! THAT'S my reality and I'm sure is the same for many others here. I would love to eat fish, or take an aspirin, and then go frolick on the beach, but that's not what RA has done for me.
47 years old. Diagnosed with RA January, 2005.
methotrexate. folic acid. prednisone.
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I think the problem is that many seem to be upset on how Sandy decided to treat herself. She chose alternatives and she is doing a lot better than most here. That in itself should not be the issue.
There were a couple of knocks because she feels 'pure'. So what? I feel pure when I don't eat processed foods.
And oddly, there was a lot more sympathy for the child who has gone thru so much...would there be the same sympathy if she had chosen 'alternatives?'
Kayleen - you say you don't want to hear success stories. That doesn't make sense to me. If you're willing to give up and NOT try different meds, if you aren't going to keep trying to find your magic combo, be it traditional or alternative, then right there you are saying you never expect to get any better.
Can you imagine being newly diagnosed and reading an article about how damn awful this disease is? Please go back and read all the examples in this thread. How would you like to read that this is your only future?
Frankly, I commend Arthritis Today for having the courage to print this type of article. And for a magazine that is supported by Pharma ads...that took a lot of courage and I have no idea how it made it past the editors.
Antibiotic Protocol - Minocin, Zithromax, Naproxen (occasionally), 1 mg. Folic Acid. Supps are Milk Thistle, Black Cohosh, Bromelain, Potassium, Magnesium, Calcium, NAC, B12, Hawthorne, CoQ10, MSM, Tumeric, and weaning Melatonin! PROBIOTICS, PROBIOTICS, PROBIOTICS!!! Occassionally Nystatin, Diflucan, GSE, Oil of Oregano still sitting on the counter! Feel free to PM me about the Antibiotic Protocol~ Healing is a matter of time, but it is sometimes also a matter of opportunity. Hippocrates
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Pip,
Go back and read my response. It's not that I don't want to hear success stories. I think they are great, and I'm thrilled for the people that experience them. I myself have my own success story. For ten years I was in remission and only on 5mg of prednisone -- no other drugs. I was able to stay in remission for that long mostly just by keeping stress to a minimum and living in a hot, dry, stable climate. Now I'm in a major flare that has been going on for ten years. During that time, I've tried many, many things. I've tried homeopathy. I've tried yoga. I've tried an elimination diet. I'm now on AP treatment and Orencia. I've already been on methotrexate, gold, placquenil, azulfadine, enbrel, remicade, humira and kineret. So, it's not that I don't want to try new things, but that I've already tried so many things.
My point was that some people have tried everything they can think of and still flare. I want to hear from those people. I don't want them to be silent because some people want to hear only about rosy, happy things. I want to hear reality. That would include non-success stories. I want to hear from them because that's what I'm going through now, too. It helps so much to know you're not the only one to have failure after failure.
It's been interesting to read the different perspectives on this article. Even more interesting is how upsetting it's been to so many posters. I like that this forum allows for all perspectives. That was what I was trying to get across. Arthritis Today does seem to be biased towards only positive success information, with pictures of people with no deformity from RA. That's not reality for many of us. For those of us who struggle despite trying many drugs and treatments, hearing from others who have had failure is vital. We just want to know we're not the only person to try so many things and still be so sick. We want to know we're not alone.
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I did not read it yet, but I hate stupid stuff like this. I agree with everything you said, and I too have had countless conversations with people about what they think I should do. I usually end it by saying something like 'I just try to follow my doctor's advice and use medications she tells me to take'.
Maybe on a good day we should all take pictures of ourselves, drink that special drink someone saw on T.V., give it all the credit, and call it good!!!!
Life should be that easy. Does anyone have a magic wand?
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Kayleen -
I think I understand you a bit better but its NOT going to happen because those magazines are supported by Pharma ads. They don't want to have a 'non-rosy' look at RA. Like the TV ads, you're supposed to be up dancing a jig and running on the beach after using them. The last thing they want is to show that you're not 'perfect' after using them.
Pip
PS - as a personal response, AP isn't AP unless you're weaning traditional meds. There is no suppression in AP (Dr. Brown would turn over in his grave - LOL) If there is suppression going on, then it's just 'combo therapy'. Thanks!
Antibiotic Protocol - Minocin, Zithromax, Naproxen (occasionally), 1 mg. Folic Acid. Supps are Milk Thistle, Black Cohosh, Bromelain, Potassium, Magnesium, Calcium, NAC, B12, Hawthorne, CoQ10, MSM, Tumeric, and weaning Melatonin! PROBIOTICS, PROBIOTICS, PROBIOTICS!!! Occassionally Nystatin, Diflucan, GSE, Oil of Oregano still sitting on the counter! Feel free to PM me about the Antibiotic Protocol~ Healing is a matter of time, but it is sometimes also a matter of opportunity. Hippocrates
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You are right on both counts, Pip. I am on combination therapy because minocycline alone just wasn't cutting it, and Dr. F didn't want to add anything else like Zithromax.
The magazine is supported by those ads, and so the magazine has a comundrum to deal with in terms of articles in the magazine contradicting those ads. People really hate that sort of thing, because it makes no sense. But I also think there is a current trend towards eastern and nontraditional therapies because there is a lot of money to be made through them. Typically insurance doesn't cover them, so no insurance companies to deal with -- just pure profit. And so this article on treating RA without medications that may halt progression and deformity. Or, to put a more positive spin on it, this article on treating RA through alternative methods and how it went for this one person. In that light, it's just an interesting peice giving information on a different way to handle RA.
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There is a lot less profit in supplements that cost only pennies a day vs 20K to 40 K a year for traditionals...which are approved under Medicare for reimbursements. Even if people pay out of pocket, their yearly costs are way less than their out of pocket expenses what with the new tiered programs for deductibles that our friendly insurance companies have developed to deny coverage.
And if this magazine went to ONLY ads for supplements...they wouldn't make half the profit they make on Pharmaceutical ads.
If people really want articles about people who failed all the traditional meds, write the editor. Keep writing. Let them know you want to be heard. If enough people agitate for change...the stories will start showing up in news outlets.
Pip
Antibiotic Protocol - Minocin, Zithromax, Naproxen (occasionally), 1 mg. Folic Acid. Supps are Milk Thistle, Black Cohosh, Bromelain, Potassium, Magnesium, Calcium, NAC, B12, Hawthorne, CoQ10, MSM, Tumeric, and weaning Melatonin! PROBIOTICS, PROBIOTICS, PROBIOTICS!!! Occassionally Nystatin, Diflucan, GSE, Oil of Oregano still sitting on the counter! Feel free to PM me about the Antibiotic Protocol~ Healing is a matter of time, but it is sometimes also a matter of opportunity. Hippocrates
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Yeah I want to hear about failures with the meds and the hardships of the RA thing! I am so in agreement with Jay and other about this article. I want to know there are people just like me struggling to find the right comb, that get sick from the meds, that swell and and have incredible pain and that things may not get that much better. I am in year 3 of being sick and feel that newbies need to know that it is an uphill battle instead of things beings sugar coated. It is hard day in and day out of not feeling good hurting 24/7. I have hope. I have tons of hope-without it I couldn't get out of bed in mornings but this story just hit me the wrong way and really upset me off.
Thank you Jay for your starting this post. I love reading everyone responses.
Aims
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Then please write the editors and tell them what you want to see.
Pip
Antibiotic Protocol - Minocin, Zithromax, Naproxen (occasionally), 1 mg. Folic Acid. Supps are Milk Thistle, Black Cohosh, Bromelain, Potassium, Magnesium, Calcium, NAC, B12, Hawthorne, CoQ10, MSM, Tumeric, and weaning Melatonin! PROBIOTICS, PROBIOTICS, PROBIOTICS!!! Occassionally Nystatin, Diflucan, GSE, Oil of Oregano still sitting on the counter! Feel free to PM me about the Antibiotic Protocol~ Healing is a matter of time, but it is sometimes also a matter of opportunity. Hippocrates
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I was really affected by this discussion. It was mentioned in my blog this a.m. here. To me there is a problem created by presenting RA too lightly - there is no strong movement for a cure in this country. If people are shown to think that RA is not a big deal, there will not ever be.
I wanted to respond to so many of your comments. Several folks mentioned living far from the beach. The beach is a special place. Some friends and I who have RA do live near the beach and it has never helped our RA anyway so don't feel bad. But we still love the beach.
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