Leaving It All on the Field: Not the Safest Choice But Maybe Best

Sightseeing, small steps, and sleep

KB_Kelly_Randy_FDA_AACI’ve spent most of the last 3 weeks lying down with ice on my neck, or taking extra meds for the back spasms. The night before the FDA tofacitinib hearing, my back got so bad that I was about 90% certain that I would not be able to attend. My little walk to the White House intensified the ol’ back spasms as well as the usual joint flares. I could barely walk the day I testified. And I was extremely unsteady from meds. I felt stupid since resting would have been the safest choice instead of sightseeing. But, like most people with RA, I want my life back – and I fight to get any piece of it. And who wants to be the mom who made her daughter miss seeing the White House and the Washington Monument?

I made it to the hearing Wednesday after 4 hours sleep between med doses, taking tiny steps and holding onto my back. It felt like such a victory to just be there, I assumed it would go well. After all, I’d rehearsed my presentation over 100 times – enough to say it backward. But the frosty room and unresponsive remote control, combined with my physical condition and the disinterested committee drinking water, looking down, or talking while I spoke… I did less than my best.

Kelly FDA AAC 2012

The one hour public hearing lasted only 25 minutes. I went back to my hotel and slept the rest of the day – still in my dress. Thursday morning, we flew home to Katie Beth’s graduation. No one expected me to attend, but somehow – you guessed it – I did. Then straight back to the bed again. Hopefully, the doc will have some answers for me tomorrow. When Mary Khris texted me about how the hearing went, I replied “God is good.” She answered, “I’m glad it went well.” I said, “No, it didn’t really, but God is still good.” Honestly, I was angry at myself, but it will work out for the best.

Trying to do what you can’t is a pain in the a… sacroiliac area.

Some people who have no idea what it’s like to live with RA judge us for not trying hard enough. That’s why I give patients the benefit of the doubt that they’re telling the truth about their symptoms. And that they’re doing the best they can.

My son Tiger required stitches on his face 4 times before he was 3 years old – each time because he charged forward, pell-mell. He’s always been a warrior. Now 15, spring training for football has come with severe sacroiliac pain. The pediatrician has him on ibuprofen while he waits for a cancellation at the specialist. Friday night, I drove a few blocks to pick him up at practice and he was walking like me (i.e. a person with RA) again. When he felt like talking, he explained he couldn’t finish running laps because he literally couldn’t go another step. A coach gave him an alternate exercise, but he couldn’t do that either. The coach would not take no for an answer. He said, “Momma, you don’t understand what it’s like when you can NOT do something and yet you HAVE to. And no one knows how bad it is.”

“Son, I think I do understand. You just described my life with RA.”

More on the outcome of the meeting tomorrow! Meanwhile, these IMPORTANT NOTES

  • The deadline for the Scavenger Hunt contest is extended until Friday, May 18. Two readers will win 6 kitchen tools each to keep or give away.
  • Guess what BIG celebration occurs this Thursday, May 17?
  • New Press section of the website is almost completed; see menu at the top of the page.

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/

12 thoughts on “Leaving It All on the Field: Not the Safest Choice But Maybe Best

  • May 14, 2012 at 6:06 am
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    rawarrior 75dgrees yesterday,neck killing me but went riding on the bike anyway! Was dreaming of my icepack 🙂 Keep the faith kelly!

    Reply
  • May 14, 2012 at 6:49 am
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    Brought a tear to my eye. Can relate to so much in your blog today. It’s nice to know we are not the only people who feel like we do, to bad it’s on the fact RA is in our lives. Your family is beautiful!

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  • May 14, 2012 at 6:58 am
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    Dear, dear Kelly if it is any help for you to know, I watched the first few hours of the hearing and I saw other people squirming and fussing and tapping pencils when the pharmaceutical company was speaking. One fellow at the table was rocking his chair back and forth and talking to a neighbor and drinking something. I couldn’t watch all of the hearing and I missed your testimony but do know that we care out here in RA land. You are the ONLY person in my life that truly gets RA and that helps.

    Reply
  • May 14, 2012 at 11:11 am
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    I’ve had RA for 23 years and find ICE is NOT THE ANSWER. MOIST HEAT IN ANY FORM, IE, BED BUDDY, WARM TO HOT CLOTHES GIVE ME MUCH RELIEF ALBEIT BRIEF. DOCTORS NEVER RECOMMEND moist heat

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  • May 14, 2012 at 11:13 am
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    And your post speaks volumes for me personally. As a fellow blogger I am often requested to represent, attend or be the voice of my illnesses. I can’t. I wish I could. I have spoken often in my career but have realized that as much as I want to raise awareness about ra, thyroid diesease/cancers, osteo, sjrogens and the list goes on and on…I must use my keyboard to do the best I can with what God has given me to use. Saying no has been the hardest thing for me to learn personally and I often still wind up paying the yes price. I am currently paying dearly for saying yes or rather not saying no loud enough…fostering three kitties. And sometimes I wonder if expelling my energy on Washington is even worth it. And yes I group the FDA into Washington folks. Your depiction of their lack of ability to listen just reinforces what is wrong with politics these days. But I truly hope that your attendance, presenting and sacrificing your precious little energy will help in the long run. Your blog and your orgnaization is doing more then 10,000 meetings will ever do. But we all do appreciate all that you. We would never fall asleep on you or look away or worse yet…talk.

    Reply
  • May 14, 2012 at 11:40 am
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    Hi Kelly,

    Thanks so much for going and testifying, despite your pain! You at least made it there and testified, even if you have criticisms of yourself chances are good that you made a great impression and there was still some exposure to the patient point of view – chances are pretty good that no one else but you has any idea that you were somehow less than your own idea of perfect. We are often our own harshest critics, perhaps because we know what more our own capabilities, and we might have done had we NOT had to also deal with the disease. Thanks again for doing so much for all of us!

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  • May 14, 2012 at 6:43 pm
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    Hi Kelly,
    I think you are being too hard on yourself. I’m sure you did a great job. I was at work during the hearings,but will catch them on c-span on one of those sleepless nights. (yeah, i watch it a lot)The message is out there,more people than those rude politicians heard you.
    Lynne

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  • May 14, 2012 at 8:57 pm
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    1) if you had hand outs, don’t underestimate the effect your presentation has after the fact. Staffers read and digest this stuff and pass it up. That is how your voice gets heard. It’s not like on tv.
    2) You had a seat at the table. That means you are being heard. That means you are already winning
    3) Your voice for this community is loud and clear. Be proud. Applaud yourself.

    Reply
  • May 14, 2012 at 9:45 pm
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    Kelly,
    I am sure you touched someone with your testimony. Even if they seemed uninterested it is amazing what your mind will absorb without intention – and later recall.
    Please don’t beat yourself up about this. You did it!!! Give yourself credit for a job well done.
    Gentle hugs and prayers being sent your way.

    Reply
  • May 14, 2012 at 10:11 pm
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    Kelly, thanks for speaking for RA patients, we all appreciate it! I think we all know that some days are better than others. If you had a cold unresponsive audience, that had to be frustrating, given how much energy you put into the travel and presentation. I read your written presentation, and I’m sure they will too, and will hear what you had to say. Hang in there, and rest up!!! Thanks.

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  • May 14, 2012 at 10:21 pm
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    Your words-“I want my life back- and I fight” sum it all up.

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  • May 14, 2012 at 11:39 pm
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    Kelly,
    So proud to have you speaking and teaching to make life and dealing with all those idiots (people) better for all of us. Don’t even for one minute think that you didn’t do a good job or if it was enough. I now is a sacrafice and at times when I feel like I can’t go to a school meeting/activity from my sons school or have another fight with a nurse or Doctor and insurance company, I want you to know that I think about you and it gives me strength. I would be so upset to hear that any of them minimize your pain, symptoms or confuse your bloodwork result because of the work that you do out there fighting for us.
    I think about you attending those meetings and knowing your counting every step back to your room and your bed and whether it’s meds, ice packs, heat, etc. you can’t wait to get to it to help you feel better. I seriously don’t know how you do it. When I go to my son’s Band Concerts and sit there in pain and come home and hide my tears from him it just about does me in and I wouldn’t trade it for the world, but seriously don’t know how you do it and I’ll continue to pray for you and appreciate everything you do.

    Reply

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