RA Will Not Win Blog Carnival

Ferris wheel for blog carnivalWelcome to a special blog carnival with this theme: How Do You Keep the Disease from Taking Over?

How will I ever summarize all the inspiration and passion of the wonderful posts contributing to this carnival? It will make great coffee break reading for the rest of this week, so bookmark this page until you’ve read each one! So many great images, too – you’ll be smiling for a week.

Sonya at Sonya Huber wrote Breaking Up with the Fictional Self. “At the same time, this phantom body syndrome, the fantasy version of myself, can easily take over if I let it. It’s a video game of shame in which this body, the one I have, always ends up losing, judged as inadequate. I can’t help but imagine a paradise in which I would get everything done that I felt I needed to do.” Read how she wins the battle. I don’t want to spoil it.

Lorna at Life with RA is a Pain wrote Keeping the disease from taking over. Lorna says she’s learned “taking care of myself” and being careful “to conserve my energy for things that matter the most to me” are critical to dealing with chronic illness. She’s inspired by a friend who reminds her “it’s your time to dance.”

Dana of At the Water’s Edge wrote RA Won’t Get the Best of Me. Dana’s toolbox includes doing what you can while accepting help if needed, focusing on faith, and delighting in life’s simple joys. You’ll love counting those joys with her.

Cynthia of Treasures from Darkness wrote Ways I “Keep” my LIfe with a Chronic Disease. Her spine and joints may be a “train wreck,” but Cynthia’s gratitude and enthusiasm is contagious. I felt inspired to try practical things “to keep a grip on my life,” but trust God with the outcome.

Lily of RArainbow wrote How to keep (J)RA from taking over your life. As we work through feelings and learn to cope with pain, Lily says distraction is a useful tool. You don’t have to move to do things like sing or listen to music, but when you can, there is always dancing! She listed another one of my most favorite and simple solutions: going outside. I agree it might hurt wherever you are, but being outside adds its own happiness.

Annette of Here’s Your Gold Watch – Rheutired wrote RA Circus. You’d know she captured my attention when she started with an elephant! You’ll be delighted to by Annette’s circus themed list of ways to get beyond the houseguest you can’t get rid of (RA). How about “I love exercise that you can do lying down”?

Deb of Struggling with Rheumatoid Arthritis wrote How do you keep the disease from taking over?  Deb says living with RA has helped her to focus on being mentally strong and being in tune with her body.

Marti of Marti’s Musings wrote RA: One Woman’s Battle: RA/RD How I Keep the Disease From Taking Over. Cooking, music, and playing with doggies are part of Marti’s strategy, but so is taking time to vent with other warriors. I hope you’ll give a special welcome to Marti since this is her second blog post! (I couldn’t resist reading the first too and now I hope to get some strawberry-rhubarb yogurt.)

Joy from A Chronic Doll wrote Beat the Pain. Six little ways not to  “not to give up and fall in a pit.”

Rachel of Putting it ALL Out There wrote Making the Best of It. She says thinking small, saying no, a good team of doctors, faithful friends, and small goals all help her to be able to say that while “Having rheumatoid arthritis…sucks,” she knows she is “blessed.”

Tanya of Living with Rheumatoid Arthritis wrote Finding Peace While Making Faces. Keeping herself feeling peace while living with Rheumatoid disease, Tanya made faces out of the produce she juiced every day. She’s now turned all those photos into a new book! Read all about it.

Joan of Life with a Flare wrote I Am Still Me. Joan knows that her illness cannot take over because of hope and perspective. This is one determined teenager.

Megan of The Girl with the Purple Cane wrote Not Letting Pain Take Over. Megan, 20, teaches us in the midst of her unrelenting pain that we are the masters of our thoughts: “I can’t control my body, but I can control my mind.”

Arthritic Chick wrote Rheumatoid Arthritis and how to keep chronic illness from taking control. She lists 12 things that help her to keep RA from getting the advantage such as knowledge, hope, perspective, getting out even when it hurts, heading straight for the couch.

Eric of Bringing Me Back Home wrote Netflix, Heat Patches, Family, and Friends. Streaming movies for when Kim is forced to spend long periods resting, heat patches (they live in Wisconsin!), teens that like hanging out with mom, and friends who make the effort to say, “We care.” All these help Eric and Kim to hold tight to hope and know that Rheumatoid disease will never win.

(By the way the brief weeks when I had four teenagers at once was a moment of intense joy so I can imagine how grateful Kim is for the attention of those kids. I’m going right now to hug the ones I have left at home!)

Rebecca of A Life Reinvented wrote Taking Back My Life. She shares her journey of learning to fight to win, from forcefully hitting a wall to days of mourning while watching TV. Read about how she finally learned “to work with RA” to make adjustments that will ensure the disease will not take over.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

23 thoughts on “RA Will Not Win Blog Carnival

  • April 10, 2013 at 6:18 am

    As I’ve often commented on Facebook I keep myself in the fight by doing all I can every day. I sometimes get depressed, like when I can’t put my socks and shoes on by myself. But I try to even though the pain and stiffness stops me in my tracks. Sometimes I can, sometimes I can’t.

    My wife would do it every time if I let her, but that’s not fair to her either. So I try every time.

    I walk every day I can. Some days I can get over 5,000 steps. Other days I can’t break 500. but I keep trying.

    I cook our meals every day. Even when my hands feel like I stuck em under the broiler, and my heels hurt so much I can’t stand still. Some days we eat out because I’m to wiped out to cook, or we have something I’ve cooked then frozen in advance knowing all to well that those “can’t” days do come.

    I have hobbies, like shooting competively. But I’ve had to do just benchrest matches because my RA won’t let me assume the typical positions required by almost all other NRA matches. I was hoping to shoot some prone “lying on your belly” matches, but my lombar spine and neck NO! So I shoot from the bench. I win too! 🙂

    I do our laundry even though I have to devote most of the day to it, and I don’t fold! If they want it folded they can fold it themselves. But I wash and dry.

    I do the food shopping, if I have to cook it I want to know what I’m cooking! I don’t want to spend the whole day in the kitchen hurting. so I cook nutrishus meals that don’t require long preparation. I don’t bake bread anymore because it hurts to much. Loretta is the family baker, and she’s real good at it. I just wish she would clean up after herself. My son has the same problem.

    What I’m saying is RA is bad, it’s a train wreck, it’s a monster pot hole you have to hit to understand it. It’s sitting here at 3:10 am writing to you all because I hurt to much to sleep! But at 6:00 am I’ll be cooking my son’s breakfast and packing his lunch like I do every day.

    Why! You might ask. Because my love for him and his mother is stronger than the RA!

    I’m MARINE, we never quit especially when it hurts.

    • April 10, 2013 at 1:27 pm

      You GO, Roger!! Wish my husband could do half of those chores but it’s not gonna happen. Hang in there. RA IS bad, but life is good.

  • April 10, 2013 at 10:06 am

    I don’t like the term ‘RA Warrior’ I am not a hero and don’t want to be. I wanted to be treated normal as much as possible but still respected and understood. To be treated normal is a big enough pleasure and praise as it means I’m not limping to day or their not staring at my walk so today’s going to be a good day!

    I also thought that the name Rhumatoid Arthritis no longer existed due to other posts and it’s no Arthritis Disease?

    • April 10, 2013 at 1:16 pm

      Lisa, I’m sorry you don’t like it. I’m just a woman fighting for her life & doing her best to let God use this for good. Please feel free to not visit rawarrior.com if you don’t like to.
      I don’t have much choice in my name anyway. My parents named me Kelly “Warrior” when I was born (Gaelic – we’re Irish).

    • April 10, 2013 at 1:23 pm

      It really doesn’t matter what you call yourself. I know how you’re feeling. Most people don’t know I have RA. I like to keep it that way. The less attention I draw to myself, the better. But Kelly, She’s OUT THERE!! Plugging along for all of us. I might not be a warrior, but Kelly IS! She deserves the title, and anyone who has RA can share it.

      • April 10, 2013 at 1:50 pm

        thanks Romona. I don’t talk about either unless I’m asked to come and give a speech. If you click on the link in Lisa’s name, you’ll see on her website she is “out there” and selling “$xtra Cash 4 U” and some other things I don’t quite understand.

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  • April 10, 2013 at 1:18 pm

    This may not belong here but the information is important. We all know the disservice Woman”s Day did to the plight of the RA patient. Well the current issue of Family Circle has just as stupid a remark as the other mag. In an article about OA, they have a tiny little blurb which reads “physical therapy can also relieve RA, which may cause joints to lock up if you don’t maintain flexibliity.” May cause? STUPID!!! If they don’t know ANYTHING about RA, SHUT UP!!!!!!!!!!!!!!!!!!!!! Sorry, just had to get this off my chest. Love and soft hugs to all of you.

  • April 10, 2013 at 1:48 pm

    Thank you Kelly for all the hard work that you do! I cope with my RA by doing what I can on a given day and if I over did it I pay the piper the next, which is being in the dreadful bed! I try not to push it to the limit because I have miniature horses that I really enjoy driving and if I overdue with something else that is less time that I can enjoy being with them, and they are my salvation along with our lord and savior, but I would be telling false truths if I said they come second! Thanks again for this blog, you’re the greatest!

  • April 10, 2013 at 3:09 pm

    Thank you for this topic. I find inspiration when we share this journey with those who face RA; the positives and the negatives.

    Lately I find the most inspiration when reading about the constructive action people are taking to confront this disease rather than just reading a litany of complaints. I believe we are called to have a positive impact on the lives of others. Please don’t misread what I’m saying. I know we MUST vent our emotions, as arthritic critic says if we bottle up our emotions it can make us sick. I know that if I am mired in emotion, I have to release it before I can see clearly and act positively. So, I do see value in venting our emotional reaction to the disease with a BALANCE of sharing the positive actions we can take.

  • April 10, 2013 at 9:40 pm

    Dear Kelly just wanted to give you a shout out. You do great work and because of you I have learned a lot about this disease. I hope God gives you the strength to continue doing what you do. Thank you for letting me know I am not alone.

    • April 10, 2013 at 10:20 pm

      thank you for taking time out to say that.it’s been a very long day.

  • April 11, 2013 at 12:15 am

    Kelly my apologies… I didn’t realise that ‘Warrior’ was your name, I didn’t mean to offend. How rude of me, I thought it was a suggested title. Also in someone else’s comment they said in a round about way if you wanted to be a Warrior’, then why not…. You know I agree with this too However it was just me and what I’m about that I personally am uncomfortable with it & I feel others may feel the same and to use it as a title it could be a little ambiguous but that’s not even the case so ho hum :/.

    And my last statement was also just a question as it all gets quite politically correct and confusing?

    Last of all there is no putting anyone down nor judging in fact commendations on getting it out there & recognised, it’s so much hard work & one hell of a task.

    Also I only put my site in the field as I thought we had to enter seething… As you’ve probably noticed I’m still working on it so it was’t to show it off nor brag & the extra cash thing is trying to do just that when you have a family & often inabled. Just trying to be pro active so don’t judg!

    My comments where statements & questions!

  • April 11, 2013 at 12:17 am

    P.s I think this was also probably all under someone’s topic maybe not in the appropriate area. Feel free to move them. That’s what you get when you work from a small screen on an iPhone.

    Sorry again!

  • April 11, 2013 at 11:37 am

    Wow. I am slowly reading through everyone’s blogs, and Sonya, you got things off to great start, your blog is beautifully written. I am enjoying everyone’s stories and appreciate that so many took the time to write down and then share their thoughts and ideas. Thanks to all.

  • April 11, 2013 at 5:47 pm

    Kelly, you do come up with good topics for the blog carnival. That’s a big plus. And it’s a great way for all of us to find interesting bloggers that we might not see otherwise.

    • April 11, 2013 at 5:56 pm

      I love the posts Annette. But I think the best part might be what you said – doing it together & getting to know new people or a new side of someone. Loved Marti’s empty rice pudding image! And you! are so creative. I’m always impressed.

  • April 15, 2013 at 8:32 pm

    I will not let RA win-period. I have no choice and I have to constantly pull myself off my ‘pity train’ but I’m pulling none the less. Saturday I went to a social gathering for a musical that I choreographed. I had just turned 51 and I got all dolled up and looked hot so said my hubby. Anyway, when I walked in folks that new of my RA dropped their jaws in shock and commented how great I looked. One person that I had not seen since I was diagnosed 6 months ago made a comment like “oh good to see you , you look great, I’m so glad that you are out of the woods and over this.” I smiled like a fox, ready for that moment because I knew someone would say that. I held my head up and said “over it? I’ll never be over it–I actually have just come out of a flare.” The she said “well what do you have again?” and when I told her she asked if it was like regular arthritis. I love educating others about RA, so that’s when I go into my autoimmune speech and how I take Methotrexate and Prednisone which right now is helping me even though I get the Big D and my hair is shedding like a dog and she said but “you won’t have to take that for long right?” I smiled and said “oh for the rest of my life unless it begins to fail then I get to move on to stronger meds, etc” I told her there is no cure and it’s a chronic, disabling disease. By the time I finished with her she had tears in her eyes and said “I had no idea.” I gave her a hug and told her that that’s the problem, not enough people know what this disease is and can do-children have it and it can kill. I told her “that’s why I am looking my best right now. I just celebrated 51 years of life on this earth and I don’t know what my future leaves but it probably won’t be pretty and certainly not easy. That’s why I am fighting and trying to not let it win.” She hugged me and told me to “never give up.”

  • April 16, 2013 at 11:04 pm

    So many great and inspiring posts! Thank you for putting this together Kelly. All the best to you!

  • Pingback: How to keep (J)RA from taking over your life | RArainbow

  • April 20, 2013 at 11:22 pm

    I had a blog for this that I gave you but I don’t see it. The others are great though! but I thought mine was pretty good too. haha did I not make the cut? =)Thanks for everyone else who wrote about this. They are very inspirational.

    • April 22, 2013 at 1:31 pm

      I’m sorry, but I’ve have never gotten an email from your address. And all blogs that were posted in the comments page of the carnival announcement post were also added to the carnival.


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