The Rheumatoid Arthritis Warrior's RA | Rheumatoid Arthritis Warrior

The Rheumatoid Arthritis Warrior’s RA

baby Kelly

The Rheumatoid Arthritis Warrior blog is not about me, but this one is.

This blog is not about me. It is about fighting Rheumatoid Arthritis. I DO have RA, but you know what I mean. Of course, I can only show you the world through my own eyes anyway. However, today I will focus on my own RA. You have been warned…

If you are still reading, I assume you don’t mind hearing a little about my own experience with Rheumatoid Arthritis.

My RA has affected every joint. And other bodily systems. I know that several of you are like me. You have sent me your stories.

Also, I had symptoms of Rheumatoid Arthritis which would flare and remit for about 27 years. That is until that fateful day on which it became what I call “full-blown.” I know several of you are with me there, too. (See Palindromic RA.)

For the past three and a half years, the Rheumatoid Arthritis has been without a remission. There has not been a single moment without its pain and stiffness and disability. The only variety from day to day is the number of affected joints. It usually ranges from 7 to about 15 joints at a time.

I know I am not utterly alone there either. (See the 4 Courses post.) As you know, studies on Rheumatoid Arthritis have not been adequate to sufficiently document or understand the disease. However, another report I just read confirms that 10 to 15 percent of what I call “RA-ers” are like me: no remissions. No flares. Just Rheumatoid Arthritis. 24/7.

The UK report calls this course of RA “Unrelentingly destructive.” (To view report, click here; then click “full report” and scroll down to page 4 for diagram. Thanks to Angela at FunkyArthur for helping me find that.)

So, some days are hard days – yeah. However, the other days are harder.

Again, just like so MANY of you have written to me, I do not complain. If I were to do that, complaining would fill my days. And if I did complain, who could believe there is this much RA?

Even before I got sick, I always said this to my family: “I am sorry. I tried not to be a person.”

This is what I meant by that: To not ever articulate any pain. To not ever be too tired to say “yes.” To not ever fail. And, by the way, a few of you have confessed the same thing to me in your messages, too.

Of course that is ridiculous! And I can hear my friend from Oz telling me that it is probably pride that made me think that way. Anyway, as hard as I tried not to “be a person,” I am. And you are, too!

Consequently, as hard as I try to avoid it, sometimes, the blog is about me. After all, I am the person who writes it.

I confess: I am a person who is fighting Rheumatoid Arthritis. And I have insurance issues. And I am trying to find a new doctor. And I am struggling like the dickens to get my website published which I have been working on for a long time. So, if you think of it, could you pray for me, too?

Postblog: This weekend, I took time to catch up on a couple of RA blogs. (Isn’t it grand there are so many that I can’t keep up?!!) I have even found 2 this week which use the word “warrior” when discussing Rheumatoid Arthritis. Our movement definitely continues to gain momentum. Fight on! (More on “warrior” in an upcoming post…)

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/

16 thoughts on “The Rheumatoid Arthritis Warrior’s RA

  • July 19, 2009 at 9:46 pm
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    Kelly,
    Of course, you are a “person.” One that is extra special, very intelligent, and caring. AND A CHILD OF A LOVING LORD! I know that you younger Mothers have so much on your plates that it’s hard to slow down. Take one baby step, breathe in, and tomorrow will seem better. I PROMISE.

    I complain loud and often. After all, not expressing difficulties and/or suffering in silence would not make the RA and OA go away

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  • July 19, 2009 at 9:56 pm
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    Thank you, Miss D. Very sweet.

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  • July 19, 2009 at 11:43 pm
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    Kelly,

    My prayers are with you. I have been trying and trying to not complain, to push on as always, and to try to not acknowledge or give in to my exhaustion. That plan doesn't seem to be going very well. 🙂 A couple of my nurse friends have told me to not allow the RA to define me. I haven't totally wrapped my head around that concept and how I go about doing that, but this week I think the RA is calling the shots.

    The blog is about you. It is about all of us, with a rippling affect. It connects with me, and with everyone who is on this site and with families and friends and co-workers and acquaintances of all of us. And when you give so freely of yourself, you allow us to be real in our struggles. Being real allows us to confront this as a whole.

    I will pray for you, my friend.
    Noelle

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  • July 20, 2009 at 6:28 am
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    Noelle, I loved how your well written second paragraph and message to Kelly. Thanks.

    Sweeties it's OK to have the bad weeks. In fact, denial and/or not expressing feeling isn't always the best.

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  • July 20, 2009 at 6:31 am
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    Noelle,
    Very helpful comment – for me and everyone else!

    I hear what you are saying about "complaining" and about the fatigue – and I found myself wanting to say to you, "Noelle, you need to say how you feel. You are a person!" Haha.

    I'll be addressing the "define me" part very soon on the blog.
    Thanks Noelle.

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  • July 20, 2009 at 4:31 pm
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    Thank you for your blog, and your post.

    The way I see it, I am not my illness, I am not my condition etc. However, I do have it. I'll have days where the RA takes up most of my energy. And I have days that have room for other stuff, fun stuff. I am much more than just my illness, but I will not deny its existence or its influence in my life.

    (do have to still find that balance though 😉 )

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  • July 20, 2009 at 10:35 pm
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    Thanks for this post. You inspired me to keep fighting.

    Aiko

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  • July 27, 2009 at 3:31 pm
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    I ran into a link to your blog from BlogHer. My father suffered from RA until he died from cancer. At times the RA caused more pain than his cancer. Even though he's gone, I still have an interest in RA and great empathy for those who suffer.

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  • July 27, 2009 at 4:25 pm
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    Thanks for your comment Kay!
    Sounds like you know RA too well.
    Did you read the story by my friend Dorothy about her husband's RA? click here

    I hope you'll say hey! to me on blogher. I just found that and you are my very first contact! 😀

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  • September 13, 2009 at 6:29 pm
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    I do like the changes, although I know it’s work. Are you feeling better? PS: I am behind reading blogs, sorry everyone.

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  • March 9, 2010 at 10:16 am
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    Finally I found something that makes me feel less alone. I have been struggling to get diagnosed for five years. Now, he my Rheumatologist won’t say it is full blown RA but I have joint stiffness and constant pain, swelling, redness, pleurisy, terrible fatigue, trochanter bursitis, reynauds (sp). I am on plaquenil, methotrexate, ultram for pain, prednisone for flares, cortisone shots in my hips every couple of months, and also have Fibromyalgia on top of it all. He keeps asking me about my pain… It gets better and worse and terrible but never ever goes away. Thank you for your blog. My kids are now ten and twelve and I have started to explain to them about my disease. Is there any information on HOW to tell your kids without scaring them? You are right, when you don’t talk about your pain, they believe it is not there. I just don’t talk about it because people get sick of hearing about it, see you are still working and figure you are faking it or something. No one gets it. Nice to know you do.

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    • March 9, 2010 at 12:50 pm
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      That’s a good question, Heather. My teens were all pretty aware since I was so disabled so quickly. They are actually the biggest supporters I have and believe me more than anyone because they see me all day long. My little one – almost 5 is different. I did not want to scare him as you say. But he is rough & hurts me a lot & he’s getting to hard to pick up – so lately I’ve been telling him “Momma is sick.” or “Momma’s hands are sick – they don’t work right now.” He has to know why I can’t do things so he won’t think I just don’t want to do them. Hope that helps a little.

      Reply
  • January 26, 2012 at 12:14 pm
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    I am fairly new to RA but I have it 24/7 also I measure mine by bearable pain and unbearable pain. I have found that no one in my inner circle understands it or even pretends to try. I can so relate to “I am sorry. I tried to not be a person.” I have always been the “go to” girl, the keeper of my family, the strong one. What happens when this girl cannot be that for everyone? Some withdrew from me. Some act as if they are in denial. My 11 year old thinks it is her job to take care of me. Where do we go from here? I have felt so alone through this. I have read many things on your site and it has enlightened me and helped me “get it” Now we need to enlighten the rest of the world.

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  • May 31, 2013 at 12:07 pm
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    out of desperation, i was online to see EXACTLY what i’m in for. And i found you, then i cried. You’ve said what no one around here wants to hear; they either don’t understand or “it” interferes with their plans for me. Have felt so USELESS & “alien” in my own skin, to sit & cry is no longer any relief. Thank you for your words. i don’t feel so very alone now.

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  • April 16, 2014 at 11:28 am
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    Hello Everyone, “What do I think?” Well, I guess I try not to think. i just ‘do’. It does make the pain go away, however, I do have many things that need doing as well as a full time job in manufacturing. Of course doing these things isn’t easy. Especially with the pain of RA and the many other ailments that come with it or even the side effects of the treatments. in my case Remicade/Mtx. Ms Youngs website calls itself and everyone – “Warroirs”. I believe that is very true of anyone who has lived with any kind of disease/ailment/cancer etc. Yes we are Warroirs and we need to keep believing in ourselves that we can persevere and get thru our ‘hell’. I have been dong it for 24 years now since I was 33. I know it isn’t always easy. I know how depressed we can feel. I feel like I am 90 years old but I try not to let it stop me all the time. Sometimes it does though. I will admit that years ago before the Remicade. I sometimes wished I could just die and …. well. Some of you might understand that feeling. Not that i wanted to end it myself but just somehow be put out of my misery. Sorry if I talked too much. I never had/took any time to discuss any of this with a support group. I guess I just took it as it was and tried to live and work thru it. Everyone please take care and believe.

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  • August 24, 2015 at 12:19 am
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    Kelly, are you still writing these? I’ve been subscribed for a while but haven’t received your newsletter in almost a year.

    Reply

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