Your Comments Are a Special Blog in Themselves

Growing up with mom’s RAIts a small world

Every day, y’all write comments, messages, and emails that make such a huge difference in this community. But they also have an effect on me. Tonight I found this gem:

Hi all! I don’t have RA, but my mother was diagnosed after she got pregnant with my brother 15 years ago.

I just wanted to let you all know that sometimes your relatives and children CAN understand how hard it is for you to live with RA and the resulting systemic health problems. We might not have felt your pain, but we’ve seen how it can change your opinions and plans and bodies so drastically. Then we educate others who we meet just because caring about someone with RA is ingrained into our lives. Being open with family and friends helps to raise awareness, because we go on to understand how drastic this disease is. We then add more people to the ranks of those who don’t understate the effects of RA and the sacrifices you all have had to make.

I was raised with the knowledge that my mom would have a hard time doing many things. I was there on the receiving end of the mood swings brought on by prednisone dose increases. I worried about her being harmed when she was a test subject for Enbrel, and was overjoyed when it made her life so much better. I try to help my dad understand why the housework can’t just be my mom’s “job”; that she can’t work because SHE HURTS, that housework actually is WORK. I’ve stepped up to the plate after two feet and hand surgeries. I’ve seen how every other health problem imaginable has caught up with her. I’ve seen how she still lives her life and tries to be a warrior. I know I could never do it. I respect her so much for not letting it get her down. She has days of depression, but she tries to wake up the next day and walk tall through her life and hardships.

Long soapbox post short, some of us see your pain and understand to the best of our abilities how much RA affects your life. We can be aware, and we try to make other people understand that RA is different than OA and that it’s not “just a little joint pain”. We just need you to share with us. Tell us how you’re doing when we ask. Tell us if you need help. Share with us treatments you’re considering. Most of us want to help, but we don’t know how to at first.

Take care and stay strong.

What could I add? This one makes me cry. She (?) hit all the right notes and some I hadn’t thought of yet.  I have two grown daughters and three sons. How much of this will they say again in 15 years?

On being discovered with RA: telling her secret

Here’s a comment from this week that really grabbed at my heart. I get lots of letters and comments about ways we can make a difference in understanding about RA and the difference that could make in our lives or for investments in science toward a cure. I call it “RA Awareness.”

OK, here’s my pledge after my intro:

I am a working actress who has RA. I’ve had 6 operations on my spine to keep me walking. My feet are deformed and I have RA throughout my body. There isn’t a joint that has not been affected. When I can, I’m still working as an actress. Fortunately, no one has discovered what I go through on set. My mind set is now different. It will no longer be a secret.

My pledge to everyone: At the moment in time that I become famous (hopefully), it will be my goal to inform the world about the Real RA. Hopefully I can accomplish this before it wins out over me. I’m 63. Everyone keep fingers or whatever isn’t hurting at the moment crossed for me!

She says people with rheumatoid disease/arthritis (PRD) are athletes!

Lately, more and more comments come from those who don’t have RA. Here’s one I just loved of course since I miss exercise and some who don’t know me misjudge me on the matter:

Dear Kelly:

Your essay makes clear that every RA sufferer is an athlete by default. The disease forces every patient with RA to battle against it physically. How daunting, yet how triumphant your spirit! Thanks for sharing your story and making RA more understandable to those of us who aren’t RA warriors.

Carmen

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/

19 thoughts on “Your Comments Are a Special Blog in Themselves

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  • October 19, 2010 at 9:43 am
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    so good, i had to share on our fb page Kelly.. Sx

    Reply
    • October 21, 2010 at 10:38 am
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      Hey Trish! Good luck getting more famous & with your RA. :heart:

      Reply
  • October 19, 2010 at 10:50 am
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    The letter from the child brought tears to my eyes. Some days it can just be overwhelming and you often wonder if anyone besides another warrior understands, apparently they do! I hope they all understand when it is a really bad day and we snap at them, it isn’t you! we love you but sometimes it is just to much at the moment. I need you to help me put my shoes on I just don’t want you to have to do it.

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  • October 19, 2010 at 5:00 pm
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    I loved the last one- what an encouraging note. I used to dream about being a world class athlete someday and though I won’t say RA has taken that from me it certainly has changed my plans a lot and makes that a far more challenging dream to achieve. It is nice to know some people are aware that even if we don’t show up at a world level competition people with RA are pushing as hard as many an athlete.

    Reply
  • October 23, 2010 at 10:34 am
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    the note from the daughter made me burst into tears. I dont have any kids of my own yet, but I did used to be a live in nanny and i have 2 adorable nephews and a niece….i like to think that they also think of me that way as they grow and learn (as my nephews are both under a year and my niece is 3)… and that when/if i do have kids of my own, it wont be a totally negative impact on them in that way. I actaully had an ex-bf of mines mother say to me once I hope to god you never have kids because of your disease … the irony? she was epeleptic and had 3 children of her own. It crushed me. My own family also worries about that too sometimes. Its nice to know that everything could be all right, even though they would have a mom with MCTD.

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    • October 23, 2010 at 1:58 pm
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      I cry every time I read it. I wonder if she knows how much it means to us or how unusual it is. I hope it will help others catch that vision.
      Of course it could be alright – your future is not dark. Lots of people w/ autoimmune diseases have kids who are healthy & happy.

      Reply
  • October 23, 2010 at 11:34 am
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    Really enjoyed today’s blog! It did make me cry however! Before I stopped working prior to all the medications I am now on I can remember my daughter helping me in so many ways, and she was just a young child! I often wonder how having to help me has changed her, how it has affected her life… I see everyday in her generosity and helpfulness, I see it in her non-complaining when I ask her for the help! I wonder if our family members, husbands and children alike, know just how grateful we are for all that help!

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    • October 23, 2010 at 2:01 pm
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      Made me cry too, Sonya. I hope more patients have people like these in their lives!

      Reply
  • October 23, 2010 at 2:19 pm
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    The comment shows that the daughter certainly ‘gets it’. I believe she and her mother are blessed to have each other. Of course, it made me cry. I think I’ll let my son (24) and my husband read it, because although they are helpful, I think this will really put it in perspective for them in a way I can’t. Blessing and hugs to them both and to you, Kelly, for making this sharing possible!! :rose:

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    • October 24, 2010 at 7:58 pm
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      Yes, I agree. This would be a good one to use the “email this” button! Cried w/ ya Miriam. :heart:

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  • October 24, 2010 at 1:00 pm
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    The comments on your delicious blog are a treat in themselves! If anyone avoids them they are surely missing out on a rich feast of knowledge and touching stories. Perhaps I’m hungry, lol. :cake:

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  • December 28, 2011 at 7:45 am
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    I look forward to your site Kelly, and when I don’t see it for awhile it becomes so disappointing.
    I know it becomes difficult for you because of your pain and schedule.
    I have just recently diagnosed and it becomes downright frightening when don’t what to expect next or what type of pain is this I am experiencing and why? Is this suppose to hurt ther too?
    Thank you for your encouragement.
    Jennifer

    Reply
  • January 1, 2012 at 6:04 pm
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    If it were bad enough that I have coronary artery disease, w/ 18 angioplastys,15 stents,
    2 open heart surgeries, one stroke, diabetes with complications and slow moving RA ( a CAT scan was done to find RA on my spine) frozen shoulder syndrome w/ 2 surgeries on each shoulder, and my hands are curled up like a birds claw and I hurt and sleep all day.

    If that were not bad enough…. I had to get into an awful car accident and my foot was smashed. No surgery for me- no one wanted my case. So I live in a cast until the bones heal themselves. I don’t feel sorry for myself, I just hate it.

    Since I have all these ugly things wrong with my body, my husband has been turned off by my illnesses. Call him immature or one that cannot cope…I do. But what will that get me? It is now a relationship of live-in companions. I am on disability. I need him to care for me. My family certainly doesn’t want to.

    As these diseases are killing me, I am dying from a lack of affection.
    And I cannot do a damn thing about it!

    Reply
    • January 1, 2012 at 6:45 pm
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      Dear Suzanne, My heart goes out to you. It sounds like RA & diabetes have been cruel to you with even more on top of that. Many spouses cannot rise to the occasion of so much “worse” when they expected more of the “better.” I agree that is seems immature. Probably it has been suggested to you already that either or both of you seek support or counseling. There are some times we just endure and hang on and wait for something to change, even tho we look for opportunities that will help it come. I’ll pray that you have the love and support you need – from wherever it comes – hopefully from him one of these days.

      Reply
  • January 30, 2013 at 9:39 am
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    I feel numb and not myself. As an artist I can hardly draw or paint at least for now. When I do I pay for it after with swollen joints and pain. They have lowered my dose of Sulfur drugs because of a rash I was getting. I was taken off the Plaquinil it was hurting my eyes. Each day I pray I ask for a gift of healing.
    Deb

    Reply

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