Rheumatoid Arthritis Natural Treatment: The Beachcomber Article
AF members react to the natural treatment cover story
Jane posted a link on our Facebook page a couple of weeks ago to a blog on the Arthritis Foundation forum by Jay. It was about the “Beachcomber” cover story to this month’s Arthritis Today, the magazine of the Arthritis Foundation. Beneath the cover story, there was a comment by Jay describing the reactions of his readers to the Beachcomber story.
I went to see Jay’s blog reacting to the story. He’s received over 50 comments. Many of them are intelligent points about the diversity of Rheumatoid Arthritis as a disease or the unpredictability of remissions. If you want to smile, the one about toothpaste at the top of the third page is the funniest.
Many folks expressed anger and offense. It reminded me of the Woman’s Day Rheumatoid Arthritis article last summer. RA Warrior linked to the online version of their RA article. Woman’s Day received about 50 comments, skillfully rebutting their silly depiction of Rheumatoid Arthritis. Over the subsequent months, I made numerous attempts to get someone from the Arthritis Foundation to respond to me about the Woman’s Day article. I feel like they finally answered me: “Kelly, go take a walk on the beach.”
From Arthritis Today: Two years after her diagnosis, Sandy had grown tired of the side effects from her medications and made the decision to stop taking them. “They told me I’d be in a wheelchair within six months without methotrexate,” Sandy says. But she found another way. “Sometimes you just have to take charge,” she says. “…I’m very proud of that,” she says. “We’re responsible for our health…”
From Lumina News: After a series of inconclusive blood tests, doctors diagnosed her with rheumatoid arthritis…. “I had a very pure system. I was so healthy. Drugs were not my thing,” she said during an interview.
One real problem with the fake media RA
The folks in the Arthritis Foundation forum aren’t upset that the Beachcomber is not as sick as they are. As Jay wrote, they just felt the story implied that since they do not do as she does, their Rheumatoid Arthritis troubles are their own fault. It seemed like it was assumed that what is advocated in the article would work on their RA.
The argument is not with this woman or Rheumatoid Arthritis natural treatment. It doesn’t even offend me that the Arthritis Foundation implies that my symptoms are my own fault. My problem is something else Jay alludes to: “…they overlook a real problem so many of us face, which is: responding to our critics (including friends and relatives) who are telling us to quit taking all those dangerous drugs, eat better, exercise, take whatever quack product they just read about, and so on, and then we’ll be fine.”
Rheumatoid Arthritis is the enemy. But, I wrote about another enemy in this post: Will the Real Rheumatoid Arthritis Please Stand Up? That foe is the mythical version of RA which we have all encountered. It’s the one in the doctor’s mind when he says we are hypochondriacs. It’s also the one Jay alludes to in which we are dull and lazy and our symptoms are our own fault. It’s Woman’s Day RA. It’s the RA presented in the media in articles like “25 Years in Arthritis” – an Article on Rheumatoid Arthritis by ABC News.
My problem with the public believing in the fake version of RA is that it does not necessitate a movement – or money – for a cure.
Postblog: Maybe the Woman’s Day RA has a new name. Beach walking RA? Anyway, the photos are of my recent happy visit with a sister warrior.
Some posts about perception of RA or natural RA cures:
- Is there a cure for Rheumatoid Arthritis?
- Rheumatoid Arthritis Diet: 3 Key Questions
- Woman’s Day’s Article: Rheumatoid Arthritis Information
- Rheumatoid Arthritis Treatment Debate
- Page from RA 101: Natural Treatments for Rheumatoid Arthritis
- “25 Years in Arthritis” – an Article on Rheumatoid Arthritis by ABC News
- Rheumatoid Arthritis Treatment: Are Natural Remedies for Rheumatoid Arthritis Better?
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this is the most confusing post. maybe it is too early in the am but what exactly are you trying to say ?
I’m sorry. It was hard. Maybe I write too late at nite.
I’m just worried that there is a problem created by presenting RA too lightly in the media. There is no strong movement for a cure in this country. If people are made to think that RA is not a big deal, there will not ever be.
It was hard to write. There are a lot of different articles that I refer/link to in the post. Sorry if it’s a bit of a maze.
It’s lovely if it works for some. For me, no meds (because of $$$ not because I’d wanted to drop them) meant quickly worsening RA. People could tell that something was wrong!
Now I am back on meds and trying to regain some of what I’d lost.
With many chronic illnesses, public opinion seems to focus on blaming the victim. It’s because you are fat, you smoke, you don’t exercize enough. While healthy practices many give us “optimal” health, they don’t insure that we will avoid all illness.
I wonder if some of this is to distance oneself from the thought that chronic illness really could happen to them, and that they don’t have complete control over it.
We don’t have complete control over our health or our bodies. We get to know what works the best for us, and roll with what comes. We try again. And again. We are all unique.
I’d love a day on the beach, and I would use all my “spoons” to enjoy it. I’d even risk the humiliation of needing to be helped back to and in/out of the car!
The beach is difficult, but I agree it is worth it.
You are right the perception of RA or chronic illness is a problem. I just don’t think these kind of pieces help that. “Blaming the victim,” as you say, is inappropriate & we won’t make progress.
Kelly-love the pics. Looks so peaceful and gorgeous. I understood completely what you were saying. It’s upsetting to me the implications of the Arthritis Today article. It seems to say that those of us on meds ARE NOT taking charge of our health and treatment. And it seems to advocate going off meds that have scientifically proven track records of helping RA from progressing. I, of course, feel everyone has the right to their own opinions and treatment decisions, but patients look to such magazines to acquire the knowledge on which to make those decisions. If their info isn’t complete or accurate, then RA patients may draw incomplete or inaccurate conclusions. I personally, would NOT choose the “natural” route. I am too afraid of the progression of further joint damage,further pericardial damage, and lung damge along with ongoing fatigue, fevers, pain, swelling, etc. I’m glad this person is doing well but we all have to make our own decisions. Thanks again for a great, thought-provoking blog entry, Kelly!
Yes! Oh, thank you Julie. I’m doin my best.
The whole point of my working on this night and day is to help us all do that: Do our best to take charge & fight. Don’t ever give up.
Of course everyone has the right to treat themselves as they choose. That is always my point: fight for your health!
I wasn’t even commenting on whether the article is responsible or even accurate. I just think putting RA in such a mild light hurts our cause.
Oh, PS: You said it so well, I was going to say that you should have written it for me. O:-)
Sheila has just left this comment on one of the posts linked to above. I thought it was so good I didn’t want you to miss it. Click here.
Walking along the beach – seriously? The methotrexate makes me so sun sensitive that I guess I could do it at night. Loved the toothpaste analogy – don’t use non-natural toothpaste and mouthwash just eat rough food to clean your teeth.
Kelly – This morning I was coming back from my rheuumatologists office, after my second shot of Cimzia and weekly shot of methotrexate and found myself humming A,azing Grace.
I went in with pain radiating thru my face bones from
inflamed jaws, shoulders that were immobile, wrists that were swollen and red, ankles and knees that were throbbing.
Within an hour, my pain level decreased from an 8 to a 2. I took my two dogs for a walk. Then I sat down and read this blog post. Here is the reply I left at the article in question-
RA cripples and ultimately lowers your life expectancy. I think good journalism would have pointed out that according to Ms. Guerriere’s own words, her disease is still active, still painful, and still disfiguring.
She has made a choice on how to treat this debilitating chronic illness, I wish her the best. I have made many of the same choices, an anti-inflammatory diet, nutritonal supplements that have proven to be helpful, Bikram Yoga three times a week as I don’t live near a beach, and live my life as a Quaker to learn to come to peace with my world and my illness.
And, the medicines that advanced science affords me are key. They are part of my long range plan to being mobile and peaceful.
I think it is poor journalist ethics to not state the reality of this disease. I’m very
disappointed in the incompleteness of this story.
It is possible to use both alternative and treatments; it’s called complimentary medicine and it’s how I chose to treat my disease.
Hi Kelly, late last year, my sister bought a book “the lupus recovery diet” that claims if one follows a very strict diet (which it details) one can cure lupus, RA and a host of other autoimmune diseases. since then, every time i complain about mouth sores, joint pain or any of the other numerous issues that come up on a regular basis, she accuses me of wanting to remain sick..because i dont want to follow the extreme diet. She’ll normally ask “wouldnt you rather follow a simple diet than take all the expensive medication?”.
It has now come to a point where i’ll suffer in silence for days on end and not tell a soul..
Mumbi, I’m sorry about your sister. Wish I could talk to her for you. :heh: Maybe someday she’ll come around. I have similar situations to that. It doesn’t make it easier, does it?
Great job writing this post Kelly! I read the Beachcomber article when I got my copy of the magazine in the mail. After reading it, I felt disconcerted. You did a great job of putting it all in words that make sense and sums up why the article made me feel this way. Disconcerted not inspired. The magazine aims to be inspiring with their stories of people, maybe they should try some inspiring realistic stories of real people. People such as you who are struggling with severe RA and yet are making a profound difference in peoples lives with their blog. I vote for Kelly being the next inspiring story in Arthritis Today! 🙂
Hi Ronda, I really do not get it. I can’t figure out why the continue in this vein. From writing about how we are hypochondriacs to this piece that makes our use of disease treatment difficult to defend. Why do you think they favor this perspective?
You would know better than me. It is something I will have to think about. Surely they know how many of us feel? I’m sure they have gotten a few letters. Maybe I should write one.
well written Kelly. I am so NOT lazy that I have to remind myself not to do too much. It’s just that sometimes I cannot even walk!
Hi, i just find out of this blog, i read some of the post and i finally find people that feel the same way that i feel.
Im 18, its been 2 years since my doctor told me i have RA.
Thank you so much for this blog kelly! It makes me smile to know that im not the only one going through this 🙂
Hi Rebeca, welcome! Sorry you got RA, but it’s nice so to meet you. :rainbow:
For years I eagerly awaited my RA Today magazine. Then I started noticing the increase in advertising, almost shilling for big pharma. The ads made the magazine difficult to hold. Then one day I counted the pages and realized that of the pages in the mag over 50% were ads. Gone was the good advice and the significant information I had relied on.
They had been replaced by the positive thinking articles along with ads for t-shirts complete with the slogans. Positive thinking is important, even if there are days (weeks etc) when it’s impossible to achieve.
It drove me into an appt. w/ a Mayo shrink, his speciality for years was assessing hypochrondria in the Air Force. He finally drilled it into me that it was not all in my mind. I’m lucky to have access to Mayo. Because the local docs. were perfectly willing to let me think I was crazy.
I’m not trying to push for Mayo here, but it was the only place I could get the help I needed and, most importantly, the understanding.
RA Today should be ashamed of the stand they’ve taken. It seems that we’re either crazy hypo’s or there something wrong because the biologics just don’t work for some, especially for those who’ve had this nasty disease forever.
Sorry my post are so long, Kelly, I’m unable to tell a short story anymore!
Not too long, Nanc. 🙂
Thank you so much for this. I too am frustrated by the fact that RA is represented so lightly in the media. The lack of knowledge among the general public still astounds me. I was just explaining it to a newer friend the other day, and he was stunned. I don’t know why I’m shocked any more. It makes me wonder if there are any “prominent” type people who have RA that could become the public face of this disease–sort of like Michael J. Fox has become for Parkinson’s. I feel like we need a public champion to foster education. Just a thought. If I hear one more person suggest to me that I need to change my diet….. 🙂
Hi Jenelyn,
That idea comes up a lot. For now, we will have to be our own celebrities. Here’s a post where we talked about that idea. Does sound hard to be our own champions?! …but we are the only ones who know!
Thanks for the link! Since I’m new here, I didn’t realize it had been discussed. But I’m not surprised. You are right–we will need to be our own champions, since we are the only ones who know. Thanks again for all you do 🙂
Jenelyn: I love your diet comment. I had to change mine due to celiac disease. Guess what? Same old RA. Way back when, the well meaning people wanted me to go sit in the uranium mines in Montana, or use the golden raisins and gin remedy. Uh, no thanks, but so kind of you to be thinking of me. Actually that always been my answer to getting people to back off and it’s worked well if said with a smile (even with the ones I wanted to smack upside the head!).
The first rheumatologist I ever saw gave me an excellent talk about how people with RA are such targets for scams, schemes etc. regarding health cures. He made me a believer, and I continue to heed his advice to this day.
Hi there. I am very interested in finding out more about the natural therapies available for RA. I have had RA for 5 years and when first diagnosed I was put on an aggressive therapy treatment. I think my rheumo was doing it all by the book. Which was ok until I realised what I was doing to my body…..I have been taking an extremely small dose of predinose (just can’t seem to get off this evil stuff) and voltaren for a year or so as my only meds and just recently I have been reading about the “wonder” drug cetyl myristoleate and emu oil. Does anyone have any experience of these things? Would love to know if it’s all “snake oil”!
Thanks
MS
Hi Majella,
I’m sorry you’ve had a hard time. Which medicines do you think have “hurt your body”? Prednisone and voltaren are not considered dmards / disease treatments, but they are prescribed for symptoms. So, maybe you could gradually go off of them and do better with the right dmard. Finding the right combination of dmards can take time, but it is proven to help reduce permanent damage of RA.
Yes, snake oil is a good word for things that claim to be a wonder drug for RA. If there were an easy cure, everyone would know about it or sell it. Here is a link to a post that may help a little with this topic of natural RA cures: click here and here.
Actually, the dmards are the closest thing to wonder drugs & many patients call them that.
Funnily enough, I never heard about going gluten free to help RA until now. It so happens that I have Celiac (probably for years, but it flared up into a debilitating illness 8 years ago). I am committed to a gluten free diet since then–never cheat–and I can’t see any effect on my RA. Mine is mostly under control against flares with a cocktail of about 5 drugs, including the biologic that has kept me out of a wheelchair for 10 years. However, even with all that, I do have occasional flares–periods of new inflamation. I’m sure I’ve said this before, but one of my wise rheumies once said to me about a flare, and I’ve never forgotten it “Lyn, you AREN’T going to try to figure out why, are you?”
My wife and I occasionally walk the beach. Till recently I had never considered RA an issue on the beach. For whatever reason my bunions seem to be exploding. I can walk, but soft sand is no comfort. I have not tried without shoes though.
I feel like my feet need the support.
My wife gets frustrated at what she views as an unwillingness to do things. She has seen some of my bad days, when everything hurts. She also remembers that Former Marine she married… (Me). He could deal with pain. RA is way more than pain. Maybe time to adjust the meds again. I don’t look forward to that guessing game.
Love this blog 🙂
Ray
The beach is still one of my favorite places Ray. Last year for my birthday, my kids took me to the beach – I wasn’t in good shape but we walked slowly wherever I was comfortable. It is a place like few others for our souls.
You probably know I never was a Marine, but I grew up in the Corps (my dad, uncle, cousin were Marines). I appreciate your comments on a deep level. The greatest compliment in my family is sometimes “done like a good Marine.” We do take pride in dealing with the hard things – I hope your wife will poke around here & read other patients’ remarks to see that you have not weakened.
I’ve had RA over 30 years. They were treating me for everything but. One moronic doctor put a splint on my left index finger because it was hot and swollen. Another doctor saw it, said take that ridiculous thing off – you have arthritis. But he never said RHEUMATOID arthritis. I also ALMOST had my right wrist fused the pain was so bad. Thankfully I didn’t. Through the decades I’ve tried every drug from Plaquenil, yes anti malaria drug now talked about for Corona virus, methotrexate, DMARDS,, holistic, Humira, the whole gamut. My SED rate went so high I couldn’t sleep unless I laid just like a mummy because of the high inflammation. I couldn’t move. I’ve had 3 joint replacements. 7 years ago I took a JAK INHIBITOR XELJANZ. The magic bullet. I had to tell my rheumatologist about it. I wanted a cytokine test. I actually demanded it. We did. My cytokine interleukin IL-6 was through the roof. Xeljanz brought it back to normal in 2-3 weeks. My SED and CRP were now normal.
My life saving drug – but it has side effects. High blood pressure cholesterol, squamous cell cancer for some. I indeed had a small one very recently removed. That made me quite concerned – I’m not a sun worshipper- no family cancer but what do I do. I began now taking 1/2 dose daily hoping I will remain constant. I mention this – the cost of relief versus living a life of extreme pain. My biggest beef is people’s ignorance when you say you have RA. ‘Oh I have arthritis too” is the wrong answer! as they point to their knee.