Advocates for Arthritis

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Wow. Wow. WOW.

I don’t even know how to catch you all up on everything that’s going on.   I’m exhausted but in a good way. So bear with me if this seems a bit scattered…I have so much to talk about that there is no way I can do it justice.

I really truly feel that the only control I have over my RA is my reaction to it.  I can be negative about it and let it hold me back (and exascerbate my  symptoms) or I can try my hardest to keep my life as close as possible to how it was pre RA.  The second choice is clearly the one that works for me although sometimes I do still have a really hard time with it.  Every once in awhile, I’ll have these identity crises- I know who I was before RA and who I was on track to being without it….so what does this mean to who I am now? 

The easy answer is the same person.  The hard answer is the same person.

I continually search for outlets to mesh the “pre” and the “post” me and I just got back from one of the best RA specific experiences I’ve had to date.

This past Monday and Tuesday, I had the privilege of being a part of the American College of Rheumatology’s Advocates for Arthritis Capitol Hill Fly In.  For those of you who are not familiar with this, it is a non-partisan (ie the only way I was comfortable participating) yearly event where a group of rheumatologists and patient advocates from all over the country jet in to discuss legislative issues that affect rheumatology with their local members of Congress. 

The trip had been on the books for quite some time and it was an absolute circus to be doing this in the midst of “current legislative events.”  Literally, the phones in the offices didn’t stop ringing, people were running in the halls at times, media was everywhere, and it seems like every major health organization was represented up there that day.

Issues that we discussed:  (I’ve linked these to the issue briefs for those interested)

Prior to our meetings to prepare us for our Capitol Hill meetings, they had a patient advocate reception.  I wasn’t sure what to expect and was a little nervous at walking into a room full of other patients I didn’t know.  I’ve never been accused of being shy but still, it’s a little intimidating. Also, when I’m nervous I either a. turn in to Rain Man b. chatter and giggle incessantly or c. curse like a sailor.  Please God, do not let me do any of the above.

I did not.

What a diverse group of wonderful people all the patients advocates were!  It was amazing- all ages and many varying levels of disability were represented.  (Not that levels of disability matter at all but coming into this, I was worried that I’d have fatigue issues/feet issues but decided the proper response was to NOT verbalize this fear when I saw that several of the people who were so excited to walk all around the Capitol had walkers…THAT is impressive.)  I love that so many people affected by this are so involved!

By luck, I wound up sitting at a table with Melinda Winner, another RA patient whose website I love to stalk.  She is hysterical and truly inspiring- while dealing with multiple types of arthritis, she still manages to write and promote her cookbook, Cooking With Arthritis, and travel the world doing all sorts of fun things like appearing on the Food Network! 

The rest of the day was spent brainstorming with our teams (generally a patient and several rheumatologists), discussing the issues, and dinner.  I was 100% exhausted but excited for the day to come when I hit the sack at the ripe old hour of 9PM. I’m so young and fun.

Our meetings on Tuesday with members of Congress were eye-opening. There were so many things I hadn’t realized about how our country works.  First, we were prepared ahead of time that most of the staff in these offices would be young, REALLY young.  Knowing that, I still wondered if the gentleman who greeted us in the first office was old enough to drive. (No, I didn’t ask.)  In spite of being so young, they are remarkably well informed and well spoken.  Everyone listened attentively, asked a few questions, and agreed to review the issues we spoke of. 

We were also prepared ahead of time to realize that we weren’t going to change the world in a day.  Meaning that getting them to review the issues or, on a more basic level, understand what rheumatology is, is still a success.  Given that criteria, I feel like our team did a very good job.

Highlights of the day?  Hmmmmmm…..three highlights. 

  • First, the made to order pasta bar in the dining room.  FANTASTIC although I did have to tell them to take it easy on the garlic. That could potentially be bad for business!  
  • Second, one of our meetings was with the legislative aide for one of our NC Representatives…who just happens to be a childhood friend of mine.  Who I also was on dance team with for years- so someone who knows what I used to be capable of and may understand just a little bit more of what this diagnosis means to me and to other people diagnosed.  I hope I didn’t scare her….
  • And third, meeting yet another Representative who has Rheumatoid Arthritis.  I feel good that RA (and other types of arthritis) are beginning to have a “face” where it matters.

So.  What now?

I realize now more than ever how important it is for us to have an accurate image out there- in the media, in magazines, in society, and in government- regardless of what side of the fence that you sit.  I’m still floored and greatly inspired by the number of patients I met who are doing just this.

I plan on keeping in touch with the people I met up there as well as attending next year (if they’ll have me!)  I plan on continuing to volunteer and finding other ways to get involved.

I’m enjoying feeling like the same old me.  Albeit me who is still exhausted and whose feet still really hurt.

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3 responses »

  1. What an exciting and inspiring event, amandajohn! Thank you so much for participating and working to enlighten others about RA on the behalf of all of us who struggle with this disease. Your action, and that of the others who participated — patients, rheumatologists, legislative aides and representatives — gives me hope that one day, RA will be a disease of the past.

    Now, take care of yourself, will you? Put those aching feet up and get a good, solid rest. I’m sending good vibes in your direction …

    Thanks again. You rock. :o)

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