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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!
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!
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.
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
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.
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!
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
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.
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.
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.
Your words-“I want my life back- and I fight” sum it all up.
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.