Advocates For Arthritis

Me, Tiffany and Tami- Advocates For Arthritis 2010

An event that is near and dear to me, the American College of Rheumatology’s annual Advocates For Arthritis, will be held Sept 10-11th in DC. I am participating this year as a Virtual Advocate so get excited to read future posts detailing efforts to help determine and raise awareness of legislation that affects our whole patient community!

I have participated in person twice and I cannot find words to describe how important and how empowering this is as a patient. But you know me, I’m certainly going to try!

I don’t think many patients understand the importance of our role in the political process that takes place. Sure, politicians receive information and speak to doctors and organizations who say that xyz affects this community in xyz way. They hear this all day long. But imagine the IMPACT that is made when a doctor says that and you, as a patient, can supplement with a personal story.

True story: my very first appointment at my very first Fly In was with the Healthcare Legislative Aide for an NC Representative who, in very small world fashion, was one of my very best friends from childhood. Do you think she remembered and communicated the reality of access to care and cost of medications with the cost of both being increased disability? Do you think it made an impact in her hearing and seeing her former competitive dance team buddy limp in with swollen hands as to the critical importance of these bills to our community?

Politics is personal.

I am excited to bring you all on this journey with me and the other Virtual Advocates. I invite you to check them out at here.

I will be posting more soon both here and on my Facebook page. By all means, ask questions, feel free to share and repost, and join in if you’re so inclined!

Pills, pills, pills!

…what I sing to myself every night when I have to take them. Either to the tune of Destiny’s Child song “Bills, bills, bills” or Lady Gaga’s “Boys, boys, boys.” Just depends on my mood and sometimes I even throw in some hip action.

I tell you this because my routine has changed yet again. I just started injectable Orencia rather than infusions. Sure, I miss all the VIP salon treatment in the infusion center. Doing fun things like completely commandeering the yearly surveys on how to make the infusion room better and making sure every patient there that morning wrote down the following requests: Keurig with coffee selection! Pastry assortments! Thicker blankets!! Punctuated just like that…except I included a well placed ‘FOR THE LOVE OF GOD’ after my own thicker blanket request.

Sweet, sweet rebellion. Why do I get the feeling that I may not be missed?

Anywho. So I had to learn how to give myself a real shot and not an epipen shot. Hilarity ensues. As I read through the directions with the nurse, I think she was a tad concerned with my hand gestures. I mean, it told me to hold it like a dart and stab it into my leg. So I was getting ready to do just that when she intervened.

Oh. So you just set the needle on the leg and gently push? You don’t start with your hand a good three feet above your leg, aiming a needle in an ominous direction? And to confirm, there is no need for speed or force?

Well. That’s kinda boring. I was gonna go all Pulp Fiction on my thigh up in here. 

I did my first one unassisted recently and it was just as uneventful.

I think it’s time for a new song. And maybe some spirit fingers.

RA is inconvenient when…

You’re having a bad hands day, you wore pants with a difficult button, and you REALLY HAVE TO PEE.

Oh yeah.

Sweet dreams are made of this!

Kate Moss famously said ‘nothing tastes as good as skinny feels.’

Kate doesn’t have RA. She has also never had fried pickles.

If she did, she would’ve said ‘nothing tastes as good as sleeping feels.’

I realized recently that I’ve had a good, strong nightcap every night for over a year. It was a stress thing, one of the few ways I could relax in my old environment.

I also figured out that certain types of alcohol increase my joint pain, namely beers and the higher tannin wines.

An unfortunate finding for the cabernat lover in me!

It would explain the fatigue: getting half lit on something that increases joint pain and stumbling into bed probably doesn’t yield the most restful sleep.

I know it sounds stupid; I knew it wasn’t good for me but trust me when I say my old employer was toxic in many ways. 

I decided to experiment and dry out for a month. Joint pain reduced and I’m sleeping like a baby!

Wow. That simple to feel that much better.

It’s motivating me to make some even bigger changes.

But first…a good eight hour date in my bed with my comfy sweats and a cuddly critter!

2 steps forward, 12 steps up

New town, new job, new doctors, new condo…heck, even a new car!

To say I have a lot to wrap my head around right now is a bit of an understatement.

I moved with the best of intentions. I was going to jump in, immediately saturate the marketplace with my awesome sales prowess, sell double my goal, and be the first newbie to ever be invited to the awards trip next year. One week. All inclusive for myself and a guest. Somewhere tropical.

Y’all, I can really see myself there.

I was going to hire a trainer and take control of reshaping my body back to health. And back to a size 6. So I’d look HOT on that beach.

I was going to immediately unpack, pictures on the wall, and keep the entire place immaculate. 

I mean, how pretty are those stairs? All 12 of them.  (Hold on to that fact, it becomes more important in a moment.)

In short, I was going to either table or dominate everything RA related and get my sh*t together.

I’ve been here a month now. Saleswise, I’m doing well but it is abundantly clear that the only tropical vacay I’ll have this year will be courtesy of the Travel Channel.

I’ve worked out with the trainer twice. I’ve also cancelled twice- once because I just didn’t feel like it and once because I wanted to watch Revenge on my dvr. And then last weekend, I pushed too hard and will find out tomorrow if my ankle is indeed fractured.

A non RA injury. Woot! But 12 stairs to my bed. Un-woot!

Oh yeah. And that whole unpack and keep crap clean? (Cue hysterical laughter.)

But it’s all good. For the first time in a long time, I’ve let myself dream and have goals. Sure, those goals were not necessarily attainable but man, are they fun to think about and to be able to try around people who don’t know you as someone who sometimes struggles.

It’s certainly a jumping (or sliding on my butt down stairs) off point. And it’s been a very long time since I’ve felt the freedom to even try to change.

Being anonymous can be so empowering.

Also empowering? Who attended WAAD last week? For those of you unfamiliar, this was a virtual conference hosted by IAAM to spearhead awareness of autoimmune arthritis. While I find comfort in dreaming big in my anonymity, I’m so thankful for this awareness that will hopefully make it so that patients like me don’t have to feel anonymous to dream big.

Feet.

I was in a discussion with q friend recently where she stated that she believed her cheerleading background to be more.athletic than my 12 years of classical ballet training with a nationally known instructor.

I fought that argument with 2 words: pointe shoes.

I was obsessed with dancing en pointe from an early age. It was so beautiful.

When they finally told me I was ready, I was so excited that I made my mom take me shopping that day.

At my first real class en pointe, I beamed with pride because of all us beginners, she called me out for having the best feet.

Of course I did. I practiced the whole summer before on my own.

For those of you unfamiliar with what I’m talking about, pointe shoes are ballet slippers with wooden toes that allow you to truly dance on the tips of your toes. You’re not supposed to (or allowed to, at least by my old teacher) do this until you’re around 12 years old, your feet have finished growing, and you’ve demonstrated that they’re strong enough to handle it through proper technique.

In other words, it was kind of a big deal.

It was also incredibly hard work. To even wear the shoes, I had to wrap my toes in gauze, pull tights over it, and put plastic padding in them. I got crap from other girls who didn’t use the plastic. But I also saw them lose toenails and that was something I never had to deal with.

My most favorite moment was dancing in the dream ballet of a performance of Oklahoma. Picture a flowing white dress, dry ice, and beautiful music.

Pique turn, pique turn, pique, pique, pique turn, arabesque.

It was hard, yes, but it was just so beautiful.

I was so happy.

Fast forward.

Last year, I saw a production of Oklahoma with the original Agnes de Milled choreography.

God, it was beautiful.

And then I remembered my feet.

I have a lot of work to do, yes.

But since being diagnosed with RA, I’ve ran many 5K’s. I’ve hiked. I’ve done a ropes course.  I’ve conquered fears and anxieties and walked myself out of toxic relationships, bad jobs, and into new situations and cities that are pretty scary to me.

But even in failure, my feet have been unfailing.

I’ve always gotten myself to better, more beautiful places.

So yeah, RA and all… I’m pretty damn proud of these feet.

World Autoimmune Arthritis Day (WAAD)!

WAAD’s uppppppp?!? 

I bet that got your attention.  If it makes you feel better, I’ve now got that commercial playing through my head continuously.  Lovely.

BUT.  I say this because- WHO’S EXCITED FOR THE FIRST EVER WORLD AUTOIMMUNE ARTHRITIS DAY coming up on May 20th?

I think it’s safe to say that I am!

For those of you still unfamiliar, don’t let my lame attempts at humor dissuade allow me to provide you some detail:

Established and hosted by IAAM, this awareness event/virtual conference will be held annually on May 20^th, online and during all time zones, making it a 47-hour online event.

It will feature:

-Live and on-demand presentations led by patient experts around subjects we all face to include:

“Who Am I Now?  Living With Unexpected Disability”

“Working Around Your Disability-From Cooking to Daily Tasks”

“Parenting a JA’er”

“Building Your Self Image”

-Scheduled live chat sessions and surveys

-Live call to action posts interactive for attendees that will immediately increase visibility and awareness

-Access to an online library of downloadable resources that can help you and supporters in managing your diseases.

This truly is an international day, with WAAD already being registered on 16 health calendars internationally and receiving nonprofit support from organizations to include the Spondylitis Association of America, Arthritis New Zealand, the International Still’s Disease Foundation, and Lupus UK.

So…I’m sure you’re thinking that there’s a catch, right?  Nope!  You can register here for free!

So WAAD’s uppppp?!?  Go ahead and register!  I’ll “see” you there!