I Fight My Pain and Blog | Rheumatoid Arthritis Warrior

I Fight My Pain and Blog

"I fought my pain & won"My daughter Mary Khris texted me from a tennis tournament a couple weeks ago. She said, “Momma, this is worse than Woman’s Day.” She texted me this image and read aloud to me the article which had upset her. She ended, “It sounds like it was her mom’s fault. RA is not anyone’s fault.”

It was an article about RA called “I Fought My Pain and Won!” in Prevention magazine which she received as a result of her tennis scholarship. The story was about Debbie McGrady who claims to have put her Rheumatoid Arthritis in remission with diet and exercise.

I’m so grateful that my daughter tries to understand and does not blame me for this unrelenting RA. She calls me a fighter: “You always give your all and you never give up. Your hard work and positive attitude have been a continuing inspiration to me.”

My responses to Debbie’s claims

Of course I don’t mind if Debbie’s RA is in remission. Or if she believes whatever she wants to about that. But only five or six percent of people with RA get remission. And someone needs to write about what the rest of us experience.

When my knee swelled in my late thirties, I dismissed it. At forty-four, I developed foot problems, and deep down I knew why. My doctor confirmed: I had one of the most aggressive cases of RA he’d seen. Left untreated, I’d be in a wheelchair in eight months.   Through the tears, all I saw was my mom losing the life she had loved. When my eyes dried, I grew determined to keep from suffering her sad fate.”

My knees have hurt for five years and been so swollen for the last month that I can’t straighten them. Some days, I can barely walk. Is that because I cannot dismiss it?

In most people, RA gets to a point where it cannot be dismissed. They can no longer do things they want to do. Most move past that point when their flares pause. Or a treatment helps them. Some are not that lucky and stay at that initial crisis status, never having a good day.

With RA and your joints, it’s use ’em or lose ’em. So boy, I use ’em. Though I’d always been active, I stepped it up. I work out five days a week—thirty minutes of cardio and lifting light weights.”

Every article I read about joint protection says to rest joints that are in flare. Exercise is safe with joints which aren’t affected by RA or if a person is not experiencing a flare.

My favorite snack was potato chips; now it’s apples—my husband jokes that I’m going to overdose! I buy only organic fruits and vegetables and hormone-free meat.”

My friend Jay says a vegetarian diet cures RA. But he knows it takes 36 years to do it. He knows because he has followed it for 35 years already.

“…my RA is in remission. Though I take the new prescription meds, I’ve met others on the same drugs who still suffer. I know it’s my attitude and lifestyle that let me live pain free.”

How does she know that is the difference between her and them (me)? Only 20% of people in clinical trials (best case scenario) improve up to 70%. Even when that happens, the improvement can be temporary since the treatment often stops working. Is that the patients’ fault?

My questions:Tennis player

  1. Were none of the 94% of us who aren’t in remission exercising when RA nabbed us from behind?
  2. Do people believe that those who aren’t in remission just refuse to exchange potato chips for apples? Are we really that stubborn that we’d be disabled and die early for the sake of greasy snacks?
  3. Why do all these people continue to take Biologics (the most pricey class of drugs on earth) and then give their own diet and exercise plan credit for their remission?
  4. Does anyone think the Enbrel ad next to the story is a coincidence?
  5. Somewhere in your mind, do you believe that people in wheelchairs are there by some choice they’ve made?

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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82 thoughts on “I Fight My Pain and Blog

  • May 11, 2011 at 12:58 pm
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    The article made many valid points, lifestyle has a profound effect on the immune system so results like Debbie’s are possible. However,possible is not the same as likely.The new drugs do have remarkable results in some people.
    Exercise strenthens muscles and protects joints. Good nutrition replaces the nutrients that RA burns up. Excess fat generates inflammatory chemicals. These things combined with good attitude can help with RA management, but the cause is in our immune system and blood. Lifestyle does not cause RA, but it can help.
    I exercise (carefully and gradually) and eat a healthy diet. I do find I need to eat a little extra protein to maintain energy and muscle strength.

    Reply
    • May 11, 2011 at 1:30 pm
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      I don’t know what your real name is but you’ve made several hostile comments so this one is not seen as genuine.

      But for the sake of others, I’ll point out that there are several articles on this site under the tag RA and Diet which make some of those points and more. However, I did not see those points in the the story about Debbie. The story in Prevention was pointed at people like Debbie’s mom (and me) who don’t get better. And it pretty clearly implied that it’s our own fault.

      As far as excess fat – I think one of the greatest dangers of RA is that its a wasting disease. The symptom called cachexia is one that is hard to fight. It results in loss of lean mass and this is linked to the typical RA appetite loss and weight loss – Therefore being slightly overweight is safer and healthier with RA. Not obese of course, but untreated RA or RA that doesn’t respond to any treatement would rarely result in obesity because of the wasting & loss of appetite. There are many patients who tell their story here about how they lost much weight with RA diagnosis. That’s the greater danger.

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      • May 16, 2011 at 2:02 pm
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        Damage to joints occurs when muscles are too weak to provide support and the joints are pulled out of alignment. Weight doesn’t necessarily have anything to do with this.

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  • May 11, 2011 at 2:13 pm
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    I would love to believe that diet and exercise would cure RA, but all my attempts so far have ended with feeling more energetic and then having another flare, usually worse than the last.
    If changing our diet, or exercising more or meditating or whatever else anyone can think of could take away the pain, don’t these people think that we would be doing it? Do they think we enjoy being in pain, that we want to be in pain?
    I can only hope that people who are lucky enough to have their RA go into remission find that it stays there and does not return at some later point. If the diet change helps them, that’s great. But so far it hasn’t helped me.

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    • May 11, 2011 at 2:18 pm
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      it looks like she thinks we are too lazy to try their method. it sure sounds that way.

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  • May 11, 2011 at 2:34 pm
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    Thank you. This says exactly what I feel. Too many people around me ( sometimes my husband) act like I’M not doing enough to stop my JRA. I exercise at Curves 2-3 times a week and eat very little processed food, reduced gluten, reduced meats, etc. I’m extremely fatigued, I can’t keep going on and off steroids, and my pain meds make me sweat in 50*f weather- and I need to do more to fix myself. It’s so frustrating.
    Thank you for this blog.

    Reply
  • May 11, 2011 at 2:41 pm
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    Jackie, I have the same kind of sister you do!! She sent me a text asked what I was doing I said I am I am at hospital getting a remicade treatment. She answered oh no pull that needle out of your arm I know of an alternative doc who can cure you if only you listen to me. My sister and her friends are going going on a three day hike down the Grand Canyon when I told her I could not go because of my health she said you do not try and that is why you are so sick. She emails me every article she finds about people who claim to be cured who had RA.

    Reply
  • May 11, 2011 at 3:16 pm
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    That’s really agressive ! I do that, it works for me so if you don’t do it, it’s your fault your ill??
    Blah ! Nosense !
    In my blog I give tips, bnot advice, I say “i try that I hope it will works for you to”. That’s not the same.
    And if eating apple, and doing sport (when your body is clearly saying to you “No don’t do it”) was enough, I think we would all be miraculously in a good shape !

    Reply
  • May 11, 2011 at 7:07 pm
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    “…Though I take the new prescription meds, I’ve met others on the same drugs who still suffer. I know it’s my attitude and lifestyle that let me live pain free. I can hike with my family, garden for hours, and do anything I set my mind to.”

    And just what are those “new” prescription meds? A biologic? They made a big difference for me too, but they didn’t become available until over 20 yrs after my RA diagnosis — so I have pain from joint damage that also limits me physically — but the writer suggests it’s just a matter of attitude and lifestyle to live pain free.

    She wrote she was diagnosed at 44 — she’s now about 50 and ran a half a marathon? Heck, 6 yrs after my diagnosis, I could still run, of course I was on gold shots then and some years later needed knee replacements — maybe running wasn’t a good idea.

    Did she get “early and aggressive treatment”? That’s the approach these days believed to put RA symptoms in check and increase chances of remission. But not all of us have access to “early and aggressive treatment.” And for some of us, these “new” drugs just don’t work or they lose their effectiveness.

    I’ve had RA too long to be bothered by these kind of articles and seen and known too many others with AI diseases to think it’s just a matter of attitude.

    Reply
  • May 11, 2011 at 7:14 pm
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    I think the author of the article forgot something very important-RA has no cure. A remission is just that-a temporary break from the pain. I am doing pretty well right now but it would be so wrong to brag that it is because I am doing something better than someone else less fortunate. My rheumatologist says there are probably 100 forms of the disease that we group as RA and someday we may be smart enough to separate them. It affects everyone differently and affects each individual differently at different times. I have experienced the pain and I am grateful for every day that I have with less of it. I hope that the author is not reminded soon that it is remission, not cure. Thank you for the facts and understanding here, Kelly. I don’t know where we would be with only articles like this to discourage us.

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  • May 12, 2011 at 2:41 pm
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    Do you know why I was so glad that I found this blog? It was because I no longer felt so alone in my suffering. There’s an old saying “Only the sufferer knows his/her suffering.”
    4 yrs ago I had to use a cane during a flare of my right hip. This lasted about 2 or 3 wks. During this time my father was dying then dead. My daughter was toddling & I was commuting to work with her and my the 5yr old. Someone who at the time was trying to get me into yoga, said to me that my use of the cane was my choice. Yeah! I was angry. I was mad as hell. Later on though I realised that she was just ignorant. We will always have to deal with ppl who don’t know & don’t want to know. Keep the faith ppl, we have each other. As for as those who continue to blab in public about that which they know nothing? I say again thank God for Kelly. Kelly you are our mouthpiece, our PR officer, our advocate and our educator. Let’s ‘Big her up’, as we say in the islands. We are grateful for you and all that you do and all that you are. Because this blog exists, I can share these articles on my FB page. Those who bother to read them already have a better understanding of this desease, and I am not the only one. Word is getting round. Keep the faith. We’ll get there. Let’s hope the poor girl doesn’t get a really bad flare that makes her switch from apples to watermellons, or worse yet… pommerac :P(you guys know what that is? A tropical fruit)

    Reply
  • May 16, 2011 at 2:57 pm
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    Of course I have to use a wheelchair – I just haven’t tried hard enough. Must’ve been a real slacker when I was a teenager and stopped being able to walk. Gack. it makes me want to puke.

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  • October 25, 2011 at 6:02 pm
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    Question: Considering remission is relative, what type of remission is she in? Remission on drugs? Or is she completely drug free AND symptom free? That will tell the truth.

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  • July 5, 2015 at 10:02 am
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    After struggling with RA for some time now I feel pretty good on methotrexate and prednisone but not good enough. I have wrestled with this disease for such a short time I feel badly for those who have RD and have had it for a llifetime. But things will get better I believe. What things? My hands, wrists, and feet. What if anything do people about Embrel? Common side effects? My Rhumy wants me to start this and wean myself off prednisone. I’m for weaning but the last time I did my osteoarthritis joing my RA. Now I want off prednisone if I can and methotrexate causes me to be tired for a few days after the shot. What does anyone think about going on Embrel?

    Reply
  • February 23, 2016 at 5:57 pm
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    Back when I was 35, we lived in FL and I had eaten some bad fish (Langostinos) which caused a severe gastrointestinal bacteria to give me diarrhea and fever for 6 weeks! Since that time, I have suffered all the symptoms of RA. Having family members in the Health community and having a minor in it myself, I proceeded to find the reasoning behind the pain, swelling, and total exhaustion I was feeling as a young, formerly vibrant mom of 3.

    I was told by my GP that my CRP was at a “normal” level, and that I must just be “run down”, and should take vitamins as well as exercise more. Since that time (30 years), I have heard the same story from 4 GP’s since then. About 5 years ago (I was 58 at the time) I started to show visible signs of RA. Inflammatory tumors had grown on my interphalangeal joints, on my metatarsals, and currently on my knees. All had to be operated on to prevent complete deterioration of the joints. Knees not yet operated on, with the “Affordable Care Act”, I cannot afford to have the operation. I even had swelling on my rib cage, after I had broken them twice (without trying).

    My husband did not believe much of what I’ve been experiencing, until the knee flared up so badly, that there was a 2″ increase in circumference vs the other knee, and I couldn’t walk.

    I used to walk every day, and move rather well, being content that the disease had not affected the legs much. All that has changed, and I can only manage teaching 4 hours a day, with minimal pedestrian travel (car to door).

    I’ve lifted light weights and done range of motion, but there’s little else I can do. I fight the pain and do not succumb to pain killers other than naprosyn 500. Can’t tolerate most pills anyway, because I have an extremely sensitive stomach (inflamed stomach 70% of the time). But I am miserable. Thank you for your website and opportunity to blog. I feel you are doing us all a wonderful service, as until this day, I’ve been very depressed. Praise God for you all who contribute to this blog as well!

    Reply
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