Tag Archives: Resources

I am.

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No really.  

I am.

Are you?

I sure hope so. 

Well, I actually wish you weren’t.  But if you are, I think you should and hope you do.

Because I am.  And I’m doing it for you too.  

Confused yet?

Ladies and gentlemen…for all of us who have whined, b*tched, and moaned over the fact that we don’t have a little yellow bracelet worn by Lance Armstrong (YUM) or snarky bumper stickers and shirts referencing breasts (FUNNY)…

I present to you the brand new “I am…” Silicone Autoimmune Arthritis Awareness Bracelet (CLEVER! CUTE! COMING SOON TO A MAILBOX NEAR YOU.)  

Produced by “Buckle Me Up” International Autoimmune Arthritis Movement (IAAM- I AM- get it? SEE- I TOLD YOU CLEVER!) to help raise awareness for autoimmune arthritis   and to help raise money to for our 501(c)(3) paperwork.  

“I Am…

A Leader for change,

Hopeful,

A Believer in Progress,

And Rebranding Stereotypes.

I am an Advocate for

Autoimmune Arthritis Awareness.

Bracelets are $1.50 each and can be purchased here.  100% of profits benefit IAAM. Great for yourself, your loved ones, groups and teams!!!

I am.  Are you?


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.

Christmas Recap and RA Gifts!

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“Merry Christmas to all and to all a good night!”

Still my favorite quote that directly relates to Christmas.  

On Christmas morning, I woke up to a bunch of text messages from friends and family. I love that about the holidays- I’m not being sarcastic yet, I really do get a kick out of who I hear from on Thanksgiving, Christmas, New Years, and my birthday. Sometimes it’s a very pleasant surprise! As Hugh Grant so eloquently states in Love Actually, phone calls made from the planes on 9/11 were not calls made out of hate but out of love.  (I realize if you haven’t seen that movie, you wouldn’t relate that quote to Christmas.  So go see- it’s one of my favorites!)

 Enter sarcasm. You may have noticed that I do not post about specific guys and myself.  That is purposeful.  But you may remember a gentleman I described a few weeks ago. The one who called me a “spoiled little girl who uses men to feed an ego and fill a void?” The one who has sent me 200 (seriously) text messages over the past few weeks, none of which were returned? Yes, that one. I’d like to thank him for the Merry Christmas text that included an up close picture of “himself.” Yes, you read that correctly. I thought it oh so appropriate how he thought sending that would help me more fully celebrate the birth of Jesus Christ. How…classy.

Hey, if you’re going to send something like that, be prepared to be called on it.  Be grateful that the picture is not posted- I promise you that NOBODY wants to see. For the record, I have never seen you unclothed and you have earned a spot in my history as the most bizarre thing a guy has ever sent me, hence it is mention-worthy. 

Ok, sarcasm complete. Back on track.

I am pleased to announce that I am new owner to two RA friendly gadgets. Ok, gifted with one and went out and found the other.  But still, I love that my family is getting into finding me cool ways to modify things I struggle with.

- Automatic wine bottle opener from Brookstone. It is glorious! You pop the plastic off the top of the wine bottle, set the bottle opener on it, press the button and it’s off! Fantabulous! The downside- I’m feeling the need to “practice” too much.

- Jar opener. My mom is having problems with osteoarthritis in her thumbs so my dad got her this nifty little gadget that helps you open jars. You fit it firmly around the jar top, secure it, and open the jar with the handle.  I went out and gifted myself with this yesterday- this isn’t the exact one I have but very similar.  

After gifts, we enjoyed all the Christmas trappings. My family has a tradition every holiday that we cook London broil. We’ve done this for years- probably stemming from the Easter where my dad managed to drop the whole hot turkey from the oven onto the kitchen floor directly into the cat food when he went to check on it. So London broil, sweet potatoes, cranberries…OH MY! Good times were had by all.

I sincerely hope you and yours had a wonderful holiday (whatever you choose to celebrate) and are gearing up to start off 2010 with a bang.

And hopefully no obscene text messages.

Get Ready for Invisible Illness Week: Beginning Sept 14th

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30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: May 2005

4. The biggest adjustment I’ve had to make is: slowing down, cutting back on physical activities.

5. Most people assume: that I’m being lame or lazy when I cancel plans or skip the gym. I’m not- it’s because I hurt.

6. The hardest part about mornings are: my body needs sleep. The mornings in flares where I haven’t had enough restorative sleep- waking up in pain doesn’t bode well for the day to come.

7. My favorite medical TV show is: Grey’s Anatomy. No RA reasons- McSteamy reasons.

8. A gadget I couldn’t live without is: my TENS machine.

9. The hardest part about nights are: getting comfortable during a flare.

10. Each day I take __ pills & vitamins. Right now, 3. At my worst, it’s been upwards of 11.

11. Regarding alternative treatments I: have tried a lot of them but unfortunately, my body responds best to traditional medication supplemented by alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: invisible all the way. Being in pain makes you feel very exposed- being able to hide that anything wrong is a comfort.

13. Regarding working and career: hard to balance sometimes but something I could never not do.

14. People would be surprised to know: I’ve learned a lot about myself through having RA.

15. The hardest thing to accept about my new reality has been: accepting that it’s forever. Forever is a very long time.

16. Something I never thought I could do with my illness that I did was: continue running. In 2007, I did 5 5K’s back to back! 

17. The commercials about my illness: generally tick me off. They’re generally off base in every way you can be off base. They feature older people playing tennis. Hello- twenty somethings get this too!

18. Something I really miss doing since I was diagnosed is: the ability to be completely spontaneous.  Not having to plan for rest or take medications with me.

19. It was really hard to have to give up: boot camp classes and high heels.

20. A new hobby I have taken up since my diagnosis is: um, blogging.

21. If I could have one day of feeling normal again I would: go wild.

22. My illness has taught me: not to sweat the small things. We all have struggles. Be sympathetic to everyone- you have no idea what they’re dealing with inside. 

23. Want to know a secret? One thing people say that gets under my skin is: “but you’re so young.”

24. But I love it when people: say “please tell me more.”

25. My favorite motto, scripture, quote that gets me through tough times is: “Pain is temporary, quitting lasts forever.” -Lance Armstrong.

26. When someone is diagnosed I’d like to tell them: it’s going to be ok.

27. Something that has surprised me about living with an illness is: there are ways to modify virtually everything to make it something you can do. 

28. The nicest thing someone did for me when I wasn’t feeling well was: bring my friends to me one time when I felt awful and couldn’t go out to see them. 

29. I’m involved with Invisible Illness Week because: it’s so important that people understand us!

30. The fact that you read this list makes me feel: cared for. I appreciate that you want to know more about something that affects me everyday.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.

We ALL should be spoiled!

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I’ve always been a firm believer of spoiling myself.  

In college, if I did well on a test or a presentation or a paper, I would take myself to Pete’s for a Reese’s Cup milkshake.  Alas, as my GPA grew, so did my waistline.  

When I got my first “real” job after college, I would reward work success with manicures, pedicures, and massages.  When I beat my first year goal, I allowed myself to splurge on the *expensive gym*.  You know, the one with a pool, a steam room,sauna,  on-site massage therapy, personal training, indoor track, yadda yadda yadda.  It was night and day different from  the one I belonged to that backed up on a strip club.  And knowing I’d never again walk out the back door with my boot camp class to run the parking lot and find a stripper “servicing” a client next to the dumpster? MONEY WELL SPENT!

Which brings me to “spoiling” my RA.  It’s been a long (and ongoing) road to learn how to respect my body as far as RA is concerned.  Sometimes I feel like I’m Arnold Schwarznegger and my RA is Danny DeVito- we both are part of the same person but we both have incredibly different characteristics and desires.  It’s a constant struggle trying to find ways to make both parts of me happy.  And the middle ground always seems to be in the spoiling.

I realize that things are tight for a lot of people right now, myself included, so I’m putting together a list of the ways that I “spoil” myself….on a budget. I’ve always been accused of being a tad bit cheap and I love finding ways to be creative and get as much as I can for as little as I can- I mean seriously, who doesn’t? I am also working on a new page where I’m going to list some low cost resources that I’ve turned to that may or may not help you guys too.  Look for this to be up by the end of the week.  (High hopes- realistically it will be up this weekend.) 

Let me know what you think!

New Way RA

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Go on over here and check out New Way RA, a great new resource for those of us who won the auto-immune lottery and for our loved ones.  This is an online talk show hosted by Deborah Norville, whose mother had RA, and features several chats with experts on nutrition, activity, the emotional side of it, and even career coaching.  I’ve seen the DVD and think it does a great job of breaking these things down in layman’s terms…..YAY for good RA PR. :)