Painless Meme for Rheum Mates

Kelly at Washington MonumentOften, I begin a presentation explaining “being an RA patient doesn’t define me.” Then, I share some things that do.

Like being a mother of five amazing young people.  Growing up near D.C. and still loving all things Washington, especially the Redskins. Rainbows, rockets, and running on the beach. Bee Gees. Tobymac. Chicago. Margaret Becker. I miss seasons, snowmen, and my own cooking.

Let’s learn a little more about each other with this painless meme.

In many cases, this disease is the reason we met, but it’s definitely not the only thing that holds our community together! We have shared laughter, pain, hope of a cure, and determination to make that happen sooner.

Here’s our easy-going rheum meme

What’s a meme? It’s just a set of questions that we each answer. Put your answers to the questions in the comment box below or post them in your own blog and leave a link to that here in a comment.

  1. What is one thing that defines who you are, regardless of RA? My faith that God loves me and will cause all things to work together for the best.
  2. What’s one food you know they must have in heaven? Peaches. Fresh fried fish. Ok, 2.
  3. Name a song that takes you to a happy place? So many! How about Dancing in the Moonlight? Or Tonight (below).
  4. What’s your favorite city and why? Washington. My childhood.
  5. Name 1 thing that you have learned by living with Rheumatoid disease? Deep. Long. Patience.
  6. What medication has helped you the most with RA symptoms? The least? Most: 800 mg ibuprofen with Lortab. Least: Biologics being like apple juice.
  7. What do you most wish health care professionals understood about RA? How constant disease activity is.
  8. What is something about you that would probably surprise most people about you? I don’t stress over anything very often.
  9. What is something about you that would probably surprise most people about your RA? Everything is easy compared to RA.
  10. What is something that you want to be remembered for? Never giving up.

Almost two years ago, we had an amazing response to our first Warrior meme about living with RA – click here to read. You can still reply to that one too! Or maybe you just want to read what other warriors said about living with RA.

Important note: I’m sorry. If you get my blog in your email box as many of you do, the last post was missing something. Apparently, when Google sends out the emails, videos are not included so you didn’t get to see the new video interview I mentioned! Please take a moment to click here to watch the video on RA Warrior or click here to watch the same video on Johnson & Johnson’s YouTube channel. Or both! Increasing the number of views of legitimate RA videos is very important for RA awareness and we can each count for several views. ALSO, please leave a quick comment on the J&J YouTube channel thanking them for having real patient voices there.

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/

63 thoughts on “Painless Meme for Rheum Mates

  • July 28, 2012 at 6:08 pm
    Permalink

    What is one thing that defines who you are, regardless of RA?
    That I am a Husband first and Father second who loves his wife and children greatly. That I have compassion for others in this life.

    What’s one food you know they must have in heaven?
    Corned Beef and Cabbage with a mustard sauce.

    Name a song that takes you to a happy place?
    Anything by Tony Bennett.

    What’s your favorite city and why?
    Duluth MN – It is by Lake Superior and the scenery is gorgeous. Especially in the fall.

    Name 1 thing that you have learned by living with Rheumatoid disease?
    That I can’t do everything anymore by myself and do need help from time to time.

    What medication has helped you the most with RA symptoms? The least?
    Most: Remicade
    Least: Humira – not strong enough.

    What do you most wish health care professionals understood about RA?
    That they would listen to me and know that I understand and have researched some area’s and have some knowledge of the disease.

    What is something about you that would probably surprise most people about you?
    That I have RA. The other thing is that I am a talkative person in the right situation.

    What is something about you that would probably surprise most people about your RA?
    The show I put on each day at work inspite of the fatigue factor. The pain is also constant but I can deal with the pain.

    What is something that you want to be remembered for?
    That I tried my best to provide a loving,caring environment for my daughter and wife.

    Reply
    • July 28, 2012 at 6:16 pm
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      Thank you Paul. Every one of the comments patients post here is invaluable. But we are especially grateful to men who speak up because it helps so many other men to not feel alone. Over and over, they say they feel like the only one.

      Reply
  • July 28, 2012 at 10:49 pm
    Permalink

    What is one thing that defines who you are, regardless of RA? Jesus and His love for me.
    What’s one food you know they must have in heaven? Nachos
    Name a song that takes you to a happy place? Our Great God..
    What’s your favorite city and why? Tinnie, NM. It feels like home.
    Name 1 thing that you have learned by living with Rheumatoid disease? Humility.
    What medication has helped you the most with RA symptoms? The least? Most: Enbrel
    What do you most wish health care professionals understood about RA? I’m not sure they can understand without walking in our shoes.
    What is something about you that would probably surprise most people about you? I’m not a worrier.
    What is something about you that would probably surprise most people about your RA? How hard I push myself.
    What is something that you want to be remembered for? Generosity.

    Reply
  • July 30, 2012 at 9:50 pm
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    Here you go. And thanks for the help, Kelly.

    • What is one thing that defines who you are, regardless of RA?

    Loyal and protective (Hey, Chinese Year of the Dog, so…).

    • What’s one food you know they must have in heaven?

    ONE food? Not a guy question, Kelly. OK, a Thanksgiving dinner. Plus pumpkin pie.

    • Name a song that takes you to a happy place?

    Several of Erik Satie’s works.

    • What’s your favorite city and why?

    Any one I haven’t seen yet. Because I haven’t seen it yet.

    • Name 1 thing that you have learned by living with Rheumatoid disease?

    Life is much better without RA.

    • What medication has helped you the most with RA symptoms? The least?

    Not sure yet. Too new to this.

    • What do you most wish health care professionals understood about RA?

    That RA patients should be believed.

    • What is something about you that would probably surprise most people about you?

    Not much. Most who know me are ready for anything by now.

    • What is something about you that would probably surprise most people about your RA?

    How a 295 pound, 1,200 lb-leg-press, car-lifting, physical guy could now be a 235 lb, no-strength-at-all, occasionally crippled, can’t-get-out-of –bed wimp in one short year.. I can’t recommend the diet, though.

    Reply
    • July 30, 2012 at 10:13 pm
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      Jack, thank you for your meme answers! Enjoyed reading. Especially the pie!
      The last one is one I’ve heard too many times. It’s something I bring up when I speak to health care professionals. As well as the “believe the patients” part – that one seems to be about universal w/ us.
      Good luck on your journey.

      Reply
  • July 31, 2012 at 1:48 pm
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    1. What is one thing that defines who you are, regardless of RA? Fierce loyalty
    2. What’s one food you know they must have in heaven? Cupcakes!
    3.Name a song that takes you to a happy place? Anything by Adele…or BEYONCE!
    4.What’s your favorite city and why? St Paul, MN because it is home AND Memphis… love the blues.
    5.Name 1 thing that you have learned by living with Rheumatoid disease? Everything is difficult but nothing is imposible.
    6.What medication has helped you the most with RA symptoms? The least? I am not very medicated as we’re trying to have kids, but the relafin seems to help.
    7.What do you most wish health care professionals understood about RA? I’m not a hypocondriac, when I say my right knee swelled up like a football and hurt… and then was better in 2 days, just believe me. Seriously, some of this stuff I would never be able to make up…and frankly, I don’t care to be in the doctor’s office that much!
    8.What is something about you that would probably surprise most people about you? I really like rap music – and nothing annoys me more than people constantly asking me “are you OK?”. When I’m not OK, I will let you know.
    9.What is something about you that would probably surprise most people about your RA? I never have a day without pain,but when I talk about the pain, then it’s an extremely bad day.
    10.What is something that you want to be remembered for? Being a good wife, sister, daughter, aunt…and, God willing, a mother. Maintaining my sense of humor and passion for life!

    Reply
  • August 2, 2012 at 9:09 pm
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    1. Well i guess its really 2 things being a mom& wife, & my faithfulness to all things in my life. (God, my hubby, my family, my friends, my country, my State; TEXAS!!!!!!)
    2. My MamMaw’s fried chicken
    3.”Keeper of The Stars” Tracy Byrd or “Thank You For Loving Me” Bon Jovi
    4.Clear Lake or Canyon Lake, Texas (my 2 homes!!!!!!)
    5. That no matter how bad you hurt, alot of times not even your family cares. They still EXPECT you to “do your job”.
    6. Most: Norco 7.5/325 & Orienca
    Least: Mtx, Huimira,Prednisone!
    7.That it IS IN my spine & neck. (A neurosurgeon & my pain mgt Dr have both told me its from top to bottom in all my spinal joints.) & That BY GOD EXERSIZE WILL NOT CURE 1 THING THAT’S WRONG W/ME! Accept being overweight! But if i exersize its going to kill my joints bc of the RA!!!!!)
    8. My house is DIRTY!!! I just CANNOT clean like my OCD used to make me & it KILLS me now to have to live in my children’s filth. It’s like I’m a prisoner in THEIR FILTHY JAIL!!!! They only clean up THEIR MESSES when i throw a HUGE fit. It takes me an entire day to JUST clean my room. Ughhhhhhh!!!!!!!
    9. My RA makes me feel weak. I’ve never felt weak in my life!!!!
    10.That I never quit no matter how bad I felt, that I was ALWAYS THERE FOR MY FAMILY! ALWAYS!!!!

    Reply
  • August 3, 2012 at 12:32 pm
    Permalink

    1.What is one thing that defines who you are, regardless of RA?
    My ability to be silly and laugh in almost any situation (appropriate or not, ha!)
    2.What’s one food you know they must have in heaven?
    Coffee (ok, that’s a drink), cherries
    3.Name a song that takes you to a happy place?
    Music is my first love, I don’t think I can pick just one…maybe “Brown-Eyed Girl” by Van Morrison
    4.What’s your favorite city and why?
    I love to travel and explore new places, so I’ll steal someone else’s answer and say ‘the next one I visit’.
    5.Name 1 thing that you have learned by living with Rheumatoid disease?
    That no matter how bad things get, I cannot be broken.
    6.What medication has helped you the most with RA symptoms? The least?
    Difficult to answer because I think it’s the combination of meds that create the best result, not just one on its own. Best combo so far for me is Remicade, methotrexate, celebrex and oxycontin. Least helpful has been tramadol.
    7.What do you most wish health care professionals understood about RA? That even ‘controlled’ disease activity causes constant fatigue, stiffness and pain.
    8.What is something about you that would probably surprise most people about you?
    I’m afraid that I will die without having done anything meaningful.
    9.What is something about you that would probably surprise most people about your RA?
    How much having it has changed how I live my life and what I do with my time.
    10.What is something that you want to be remembered for?
    Being a great friend/daughter/sister/wife/person.

    Reply
  • January 11, 2013 at 12:15 am
    Permalink

    Is there any current information on the drug Sativex that is available in Canada, and New Zealand. This is a mouth spray made from cannabis and THC.

    I wondered why this is not available in the U.S.

    Thanks

    Reply

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