|
|
|
Group: Forum Members
Last Login: Monday, March 15, 2010
Posts: 1,336,
Visits: 1,333
|
|
It's just not adding up, the whole story looks like a paid advertisement to promote her site and upcoming book, her blonde hair flowing in the wind etc etc, is this a magazine article or a pre book signing event, and the biggest thing is: we don't even know if she has RA.
Arava-Prednisone-Mobic-Daily Vitamin-and Vitamin D-Calcium.
|
|
|
|
|
Group: Forum Members
Last Login: Tuesday, April 24, 2012
Posts: 2,422,
Visits: 2,261
|
|
jane7 (2/26/2010)
I think this was irresponsible and a disservice to readers, many of whom struggle on a daily basis. To walk. Not to have a serene stroll along the beach. To just walk.
I'll stop short of calling the story an insult to RA patients but just barely. It clearly sends a message that it is possible to treat RA without meds. And I am sorry, but no. Just no. You can say "well it's only one person's journey." But it's the one you chose to print. It's not the reality for most of us. And you know that.
How about a day in the life of a mother, or someone with a job. Or a job and a family. Follow that person around. Yes I know it's not zen enough. But it's reality.
Jane
Well Jane, you're much nicer than me. This story is an insult and does a huge disservice to people battle severe RA.
I was very "in touch" with my body when I was diagnosed with RA. I was a runner and a vegeterian, healthy as a horse...Never been sick a day in my life.
I had damage, permenent damage in less than 6 months...It took me a long time to get my RA under control and into remission.
And yes, I used those "toxic" meds and didn't have any significant side effects!
I eat healthy now and I do follow the Mediterranean Diet, it didn't help my RA, but it's heart healthy and that's important for people who have RA....Rituxan put me into remission and I have remained there, but I have damage.
Damage to my feet, ankles and shoulders...Very few people with moderate to severe RA can afford to to "work through" their flares without meds, because where there is inflammation there is almost always damage...some of it unseen and deadly. And God forbid they should be like my father, who had RA and had a massive heart attack that killed him.
Arthritis today may think that this is a "feel good" story. I think it is dangerous, insulting and downright irresponsible!
LynnRituxan....In Remission after 8 long years
“Over the last few centuries, a process developed for separating fact from fiction, and it is called science…’the crash testing of ideas.’” The Microbial Metagenome, Debunking the Marshall protocol http://whatstheharm.net/homeopathy.html
|
|
|
|
|
Group: Forum Members
Last Login: Monday, September 26, 2011
Posts: 1,178,
Visits: 494
|
|
Marcy -
I'd like to thank you for publishing this article. It shows that non-traditional medical treatment is an option for many with RA. As you can see, there is a lot of misinformation out there which even other RA patients, such as those here on the Arthritis Foundations website, continue to put forth.
One common theme is that the traditional meds are more able to stop damage. Unfortunately, that is not true and has been the subject of many double blind studies or literature reviews published in Pubmed. The damage continues on even the 'big guns'.
Another is that 'trying to eat right' constitutes as making informed dietary choices. For example, while the Mediterranean is healthful for the average person, components in it might be taboo for a specific person with RA. Without a true elimination diet, or comprehensive allergy testing, one might never know that their flares were exacerbated by nightshades, or corn (in just about all processed foods) or whatever.
I like the idea that your focus was an active person who uses exercise to help combat this disease. There are a ton of Pubmed articles on the anti-inflammatory aspects of exercise. And for those who cannot do anything too intense, walking on the beach, or around the block, helps us.
Also, I like the idea that she works on keeping stress to a minimum. Recent genetic research has isolated the genes responsible for our inappropriate stress responses.
So, thank you very much on opening lines of communication between those who use alternative medicine and those who don't...yet.
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
|
|
|
|
|
Group: Forum Members
Last Login: Monday, October 18, 2010
Posts: 329,
Visits: 394
|
|
I think Cynthiadew made an excellent point -- an idea that has been in my head for a long time but that I've been unable to put into words.
As much as I would like to believe otherwise, Arthritis Today is a magazine that exploits its topic. Magazines don't sell if they have real, true-to-life depressing stories of people with auto-immune conditions struggling with their disease. Magazines sell if they have happy happy happy articles about what "works". They don't sell if they report true statistics, which are pretty depressing. Yes, natural remedies can be very helpful. But for what percentage of people? And to what extent? Put it on a bell curve. Most people will be helped moderately. On either end of the curve will be a small percentage who are helped quite a bit (as a lady in the article has been), and those who are not helped at all. This article is focusing on that small percentage who are helped a lot. The blunt, not-so-happy truth is that most of us are not.
This magazine is no different from any of the many others out there that exploit subjects in order to sell more copies. Read the next Arthritis Today magazine. Note the many articles on what "may help". Note the flimsy research backing the articles. I'm reminded of my statistics class in college. If you scew the statistics from studies enough, you can come up with whatever results you want.
Once, JUST ONCE, Marcy, I'd like to see a picture in your magazine of the RA that so many of us are having to battle. Show me someone with swan hands. Show me someone who's knee replacements didn't work out so well. Show me just A LITTLE deformity in your glowing pictures.
I have no problem with your magazine portraying those who have had great success through various means, be it biologics or natural remedies. But portray the other side, too. Show the ugly side of RA, as well as the prettier side. I won't forget that phone call I received when you were developing this article. When I told the caller that I'd tried holistic and natural approaches and they hadn't worked for me, I will not forget how quickly they hung up.
We still have yet to see ONE of your cover models with severe deformity. Just won't sell enough copies, will it? Would turn people off, wouldn't it? Well, I guess that's just the reality of the world we live in, but how do you sleep at night?
|
|
|
|
|
Group: Forum Members
Last Login: Saturday, January 22, 2011
Posts: 1,400,
Visits: 1,846
|
|
Has everyone seen the latest issue of Arthritis Today?
I've seen the cover.  My magazine is still in the sealed plastic bag it was shipped in and I hadn't decided if I was going to open it. I need less stress in my life, not more, and if my husband saw an article in AT that suggested dietary changes would work, he'd be all over my case to drop the meds and try the diet approach.
The AT online articles I've seen have appeared to be more fluff than substance, and I specifically did NOT subscribe to the magazine. I'm capable of digesting facts; I don't need things dumbed down to a sixth grade reading level. When I was first diagnosed, I requested information from AF but it was never sent. I tried again and still no luck. I gave up and bought some books, and vowed to never again order anything from AF, including the magazine, if they couldn't manage to ship things that people had ordered. Fast forward to this year, we made a donation to AF to be used for research; I specifically marked the boxes "no I don't want to be a member," "no I don't have arthritis," and "no I don't want the magazine." Now I keep getting garbage in the mail making it obvious that their online system screwed up every single one of those responses, and my money that was supposed to go to research is being used on killing trees to generate junk mail. (end of rant. sorry)
Since patients with RA go through so much testing anyway, I wish that allergy testing was also made available to aid in the diagnosis/treatment.
Shu-Shu, my current rheumy included immunoglobulin tests in my workup, and she DOES refers people to an allergist when she thinks it's appropriate. In going over the results, she told me that some people experience RA symptoms due to gluten intolerance and that those people can do very well with dietary changes. Since my results on that particular test were normal, she didn't think that a gluten-free diet would help me but that it certainly wouldn't hurt to try. Some docs DO test 
+WarmSocks
______________________________________________________
Aiming for NED
Rheumatoid Arthritis, Spondylitis, Enthesitis, Peripheral Neuropathy, Raynauds
Azulfidine (ssz), Methotrexate (mtx), Humira, Folic Acid, Feldene, Prilosec, vitamins
|
|
|
|
|
Group: Forum Members
Last Login: Monday, April 23, 2012
Posts: 5,050,
Visits: 8,419
|
|
"Inconclusive Tests?" I agree with Ronald. I'm really starting to get annoyed with this woman. 
I cancelled my subscription to Arthritis Today several years ago.
In remission since April 2011. Hoping it will last!
|
|
|
|
|
Group: Forum Members
Last Login: Yesterday @ 11:58 AM
Posts: 1,143,
Visits: 503
|
|
Gramma Ellie (2/27/2010)
"Inconclusive Tests?" I agree with Ronald. I'm really starting to get annoyed with this woman.
I cancelled my subscription to Arthritis Today several years ago.
To me, since there is no one single test for RA (and on the flipside, the multitude of seronegs who respond to RA drugs) - all test results could be called inconclusive if you wanted. I would be just as inclined to question a RA dx if there was no adequate response RA drugs as I would the RA dx of a person who responded to alternatives. I have heard it described as a diagnosis of exclusion - nothing is proven, everything else is ruled out.
|
|
|
|
|
Group: Forum Members
Last Login: Yesterday @ 3:09 PM
Posts: 5,318,
Visits: 8,294
|
|
Most magazines get their revenue not from subscriptions but from advertising. Some people have criticized Arthritis Today for promoting biologics because of all the drug advertisements in the magazine. So, its interesting to see "one" story about "one" woman's nonconventional approach in dealing with RA.
But this is just one story, there are other stories on the people's profile page. Gabi Rojas was diagnosed with JRA and takes mtx and enbrel. She is a dancer. Chantal Chamberlain has RA and takes mtx and enbrel. She is a jazz singer. Kathy Lubbers has had RA for 20 years and takes meds for it. She completed a walking marathon. And some may remember the story about Tina Wesson, the 2001 "Survivor" winner. She had RA. I don't think these women are typical RAers, yet I find their stories interesting and uplifting.
http://www.arthritistoday.org/community/people-profiles/index.php
I can understand people's objections to the Guerriere article. I found this statement by her objectionable: “They told me I’d be in a wheelchair within six months without methotrexate.” This isn't accurate. I would also like to point out that despite Guerriere's regime of diet, exercise and stress reduction, she is not in remission, still has flares and has had joint damage in her hands and feet in the 12 years she has had RA.
Though there are aspects of the Guerriere article I didn't like, I still think there is worthwhile information in Arthritis Today.
________________________________________________
Don’t let what you can’t do, interfere with what you can do.
|
|
|
|
|
Group: Forum Members
Last Login: Sunday, June 20, 2010
Posts: 29,
Visits: 26
|
|
| When i saw this listed as a topic, I couldn't believe it. I had just gotton done telling my mom (who suffers from PA) how I digusted I was with the article. Both my mother and I, have had many discussions over many articles in the magazine. Maybe for some people they enjoy reading all of the physical activity many RA people can do. However, I often am depressed after reading the magazine. The majority of stories are about people who are in running,walking marathons, still swim across the whole ocean, do aerobics, football, lots of physical stuff. I read this stuff and I think.... what is the deal ? They do all of this activity and take little to no meds. It is depressing!!! The reason why most of us LOVE this message board is because we can relate to others on this board, who are still in misery with pain, still trying to find the right meds, and just trying to cope with everyday life. I would like to see a lot more stories in the magazine about the many struggles we go thru just to endure life with RA. It seems all they publish is the happy ending stories--
|
|
|
|
|
Group: Forum Members
Last Login: Yesterday @ 3:09 PM
Posts: 5,318,
Visits: 8,294
|
|
I think the majority of the people with RA highlighted in Arthritis Today usually are on some type of RA med -- that's what enables them to do what they do. They've struggled with this disease, as most of us have, but these individual stories should offer encouragement and hope, as to what may be possible. We may not be able to run nor dance, but with the meds and technology available today, we needn't be fearful of ending up in wheelchairs.
The three women mentioned in my previous post were on enbrel and methotrexate. And in the same edition as the Guerrere story, is a story of Caitlin, a young girl diagnosed at 3 with JRA who recently had hip replacement surgery, and most likely will need other hip surgeries in her adult years. She manages RA with meds, and has led one of the top Arthritis Walk teams in her county, raising more than $100,000 for the Arthritis Foundation. Her personal story is one of adversity and triumphant. The article ends with this 11 year old's words: “Someday they’re going to find a cure. So until then, keep your life going the way you want it to and you can find a way around obstacles in your life.”
http://www.arthritistoday.org/conditions/juvenile-arthritis/caitlin-ryan-joint-replacement.php
Video of Caitlin's story:
http://www.youtube.com/user/ArthritisFdn#p/search/0/CKKoScbvPmA
The link below is to a blog by Caitlin's mom that appears on AF.
http://community.arthritis.org/jiamoms/blog
________________________________________________
Don’t let what you can’t do, interfere with what you can do.
|
|
|
|
|
Group: Forum Members
Last Login: Friday, April 20, 2012
Posts: 785,
Visits: 871
|
|
When I first got RA, I was a health food nut, exercised a lot, lived in So. California and spent a lot of time at the beach. But, when I found myself lying on the couch not being able to move for 8 hours until someone came home and found me, I said, "Give me the drugs."
I used to work in a nursing home and I will always remember this little old lady with RA who had very deformed hands among other things. She told me one day that her husband was a doctor and they didn't believe in medicine?? and that they did just fine. When I commented that maybe if she had taken medicine for her RA, maybe her hands wouldn't be so deformed, she gave me a puzzled look and said, "Maybe so". I guess everyone has a different definition of what "doing just fine" really means.
|
|
|
|
|
Group: Forum Members
Last Login: Friday, March 25, 2011
Posts: 681,
Visits: 1,479
|
|
Jay. You are absolutely right, of course. But we all need to remember that it's HER body, and she gets to make the decisions. Unfortunately, the one she has made has brought her hand and foot deformity (conveniently hidden until almost the end of the article.) Still, she gets to decide and we should support that right.
If there's anyone to blame in this sorry story it's her rheumy, it seems to me. Where's the partnership that should characterize the best doctor/patient relationship? Sounds like the doc has abdicated, and that's an awful shame.
SusanOnWhidbey
|
|
|
|
|
Group: Forum Members
Last Login: Tuesday, March 29, 2011
Posts: 534,
Visits: 705
|
|
I think I'm a little jealous...she lives in a great climate, near the beach, she is retired, or at least semi retired, seems to have pleanty of money doesn't seem that there are any obvious stressors in her life. Good for her, some of us just are not at that place in our lives yet as for the free medical advice - take what you want and leave the rest (a qoute from another group).
God bless.
Susan
|
|
|
|
|
Group: Forum Members
Last Login: Thursday, July 07, 2011
Posts: 320,
Visits: 392
|
|
Jay,
You have every right to be angry and frustrated with the magazine. I posted a letter to them also. I cancelled my subscription after the first trial offers because the articles deny the need for RA meds in an unrealistic fashion while the ads in the same magazine promote the RA meds in an unrealistic fashion. In case you couldn't tell I found the magazine unrealistic! LOL. I found myself being angry and stressed that somehow I seemed to be failing to keep up with the people in that magazine. Now that I am coming to terms with the disease I know that I am as normal as anyone with an inflammatory illness can be and that the magazine is simply about making money no matter how many lies they have to tell to do it. I salute you for speaking up, YEAH JAY! And I hope and pray that the people who are just being diagnosed will find this site before they find that magazine. I know this site has made all the difference for me. And remember what comes around goes around. At some point they will pay for what they do and say. If not in this world in the next. "Vengence is mine" sayeth the Lord.
Ron,
ROFLMBO! You go guy!
As always take what you can use and toss the rest.
God Bless you and keep you.
Bette
Current DX: Inflammatory arthritis, Osteoarthritis, IBS, Fibro, ruptured and/or bulging discs in C-spine, lumbar spine broken at L5-S1 now fused (yeah!), hearing loss & Depression (lol, can’t imagine why).
Current Meds & what they are for: Plaquinil arthritis),Triamterene/Hctz (decrease water retention), Dicyclomine (IBS), Lexipro (AntiDepressant), Allopurinol (for increased Uric Acid caused by the triamatrene!), Lortab (Pain), Flexiril (Muscle spasms), Parafon Forte (muscle spasms) Savella (Fibromyalgia), Omeprazole DR (heartburn/upset stomach from meds), Ambian (sleep aid) Omega 3 Fish Oil (anti-inflammatory), Super B-Complex, Vitamin D and Citracal to aid fusion.
|
|
|
|
|
Group: Forum Members
Last Login: Saturday, March 19, 2011
Posts: 154,
Visits: 206
|
|
| I did read the article and I agree with you. I have not renewed my subscription with Arthritis Today for just that reason. I understand that to be in a magazine, you need to look well, and I understand that we need words of inspiration, but I feel that the magazine as well as tv commercials for RA meds do not paint a picture of me. I'm so tired of seeing women walk around in high heels and running on the beach. Like most of us, I take care of myself and follow doctors orders, I just don't look like that!!!!!
|
|
|
|
|
Group: Forum Members
Last Login: Wednesday, April 18, 2012
Posts: 2,805,
Visits: 2,055
|
|
My favorite magazine for RA is "Arthritis Self Management". It is great.....very realistic and practical.
Take care.
Txnana
My Boss is a Jewish Carpenter.
|
|
|
|
|
Group: Forum Members
Last Login: Monday, January 02, 2012
Posts: 215,
Visits: 424
|
|
I'm still mad about this article. I sent them a letter tonight. They don't need to print it. They just need to read it and learn from it.
Jay I saw your response on the article page. Well done.
|
|
|
|
|
Group: Forum Members
Last Login: Monday, September 26, 2011
Posts: 1,178,
Visits: 494
|
|
Who wants to read articles about people who have no hope? Who aren't living their life to the fullest despite having this disease? Who have failed med after med? Isn't that what you all are saying? I'd much rather read about somebody who is at peace with her disease and the truth about her deformities rather than 'the realities' of this disease. How is that going to help anybody strive to get better?
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
|
|
|
|
|
Group: Forum Members
Last Login: Monday, October 18, 2010
Posts: 329,
Visits: 394
|
|
Pip,
With all due respect -- you've had many posts that I've found to be intellingent and informative.
In reply to your last post, the point isn't that we don't want to hear the success stories, whether from biologics, holistic medicine, or dietary changes. If somebody has success through ANY means, more power to them! We on this board love to hear when someone has had success, no matter how. It's just that some of us have honestly, truely tried every method we know of without success, and we'd like that side of RA to be respresented ALSO. It's so difficult to have this disease and to be unresponsive to any form of treatment. But to have to also feel like we're the only person on the face of the earth like that -- how horrible. I find comfort in the success stories, but because I'm unresponsive to any form of treatment, I also find comfort in the fact that I'm not alone, that there are others like me. Thank God I'm not the only person alive who struggles with this disease. A positive attitude is great. The success stories are great. But let's not ignore the people who haven't had success. It's not their fault, and they deserve to be heard and represented also.
Some people die from cancer. Some people end up with deformity from RA. That's life. It's not always pretty. But that is reality.
|
|
|
|
|
Group: Forum Members
Last Login: Monday, March 15, 2010
Posts: 1,336,
Visits: 1,333
|
|
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.
Arava-Prednisone-Mobic-Daily Vitamin-and Vitamin D-Calcium.
|
|
|
|
