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March 27, 2005

A Break In The Action

I thought it only made sense for me to update my blog even though I have not completed the entire “Diary of a First-Time Arthritis Advocate” yet. There is still much left to tell about the experience on Capital Hill.

As a break, I thought I’d jump back to more present day things.

Like many people around the country, I have been swept up in March Madness. This may seem strange to those of you who read my blog – why would a former ballet dancer now arthritis patient and writer be caught up in the NCAA men’s basketball tournament?

The WVU Mountaineers.

My father and mother are WVU grads and I start the MFA in Creative Writing there next year. I grew up watching WVU sports with my dad. We still get together on football Saturdays to watch the Mountaineers or tune in to ESPN when they’re on in other sports.

But for any of you watching this year’s tournament, the Mountaineers captured more than it’ alums and fans attention. This “bubble team” which was 8th over all in it’s conference, The Big East went all the way to the Elite Eight, and only went down in overtime to Louisville, coached by Rick Pitino, one of the legendary couches in the sport.

Bigger than this accomplishment is that they did this by winning games away from the home court, taking on 13 ranked teams and beating 8 of them. The experts picked them to lose every time, or at best nearly every time. If there was a memo that they were suppose to lose, the Mountaineers certainly didn’t get it.

They beat Wake Forrest in double overtime, a team that many experts thought should go to the Final Four. The ousted Texas Tech, coached by Bobby Knight. All experts expected them to lose these games – many predicted by blowout proportions. They played tough in the first round against Creighton, a team who has been to the tournament 6 times in the last 7 years.

Bigger than this is the fact that the Mountaineers accomplished this without any “stars” – no All Americans. No players that were nationally recognized. They did it by playing as a team. Every game a different player made the difference. Eight players were a threat to hit three-point shots. Team. A refreshing word in a world that seems to be diving headlong into “me first” type celebrity.

Each time they played, I watched. I found myself being amazed that they could beat teams stacked with talent, with larger, more athletic players and big time coaches.

The team’s coach, a man unrecognized until this point by the sports press, had coached at every level. At one point, he coached a small college team where he also drove the bus to away games.

Besides the fact that I’m attending the university next year, or that I grew up as a fan, I think this team represents some things that tie right into my feelings and thoughts as a rheumatoid arthritis patient.

1. Never give up. The team never gave up or gave in, no matter what talent they faced or what the experts said would happen. They practiced and worked and proved them wrong. I think as a person with a chronic disease, this is an important reminder that life only gives in to RA when I give up on my ability to live the life I want. Things are not easy. The challenges are always present. If I give in I will lose. But if I don’t, I will have victories. Tenacity is key.

2. Put together the right team. Coach Beilien of the Mountaineers said that in recruiting he’s looking for good kids first. If he has the right kids with the right attitudes and they buy into his system, they’ll be successful. I think the same is true for me with my RA. My team is my doctors and other health providers, family and friends. I think that we forget that as patients and as people we owe it to ourselves to find people who care about the outcome. I won’t work with a doctor who is so clinical that he or she doesn’t see me as a person, but only as a diagnosis or a patient. I look for support from people who understand my goal is to live a fulfilling and productive life despite the fact that I have RA, rather than perpetuating the victim mentality. It’s all about surrounding yourself with the right players and working as a team, in concert with one another.

3. Dig deep inside for strength. The Mountaineers had more than their fair share of nay-sayers. Networks probably wanted flashier, easier to hype teams. Analysts wanted matchups of the coaches they called “legends.” The players and coaches at WVU kept coming together as a team, but as their post game interviews also showed, they looked for strength within themselves. They believed. Having that belief in yourself is a powerful thing. It’s easy to be negative about the circumstances when your heading out on the court to play a bigger better team or if you’re battling your RA and trying to get out of bed and make breakfast. Sometimes you have to believe you can and will get better before you do. Mike Gansey, one of the players for WVU stated playing basketball for another college, whose program fell apart. He found a place at WVU, sat out a year because of NCAA rules. During the Mountaineers’ incredible run, he called it “a dream come true.” Like him, those of us with chronic disease have to first dare to dream. Then believe. You have to believe it when you can’t sleep because of the swelling and pain of your joints. But if you can’t imagine a better tomorrow, a better outcome, you will never get it.

Lately my RA has been acting up – my knee is swelling again and sometimes I need my cane to walk. But I’m not giving up or giving in – not after my bout of March Madness with the WVU Mountaineers.

Basketball isn’t saving the world, but in a way, it saved me. It helped me stave off depression from going backwards from my RA. It gave me something to look forward to and the players offered a great example of overcoming the odds. I just loved watching them.

If basketball and sports don’t get you excited, then find something else that will. Find that point of inspiration, apply it your world. You might be surprised how something wholly unrelated brings you the answers to questions you didn’t even know you were asking.

As for me, well, I can’t wait to see the Mountaineers play next season – in person.

Posted by renee at 3:24 PM | Comments (8)

March 15, 2005

Diary of A First-Time Arthritis Advocate - Continued

Sunday, February 27 ,2005

7:15 pm

Tonight’s actives finish with a buffet-style dinner and presentation by a leading arthritis researcher. In line for the buffet, Joanna and I talk to women from Milwaukee, Wisconsin area. I also talk to a woman from New York that knows Nick Turkas from our chapter. Actually, many people here know Nick and he is very popular, which isn’t surprising to me. He’s super dedicated and exceptionally knowledgeable. I think he’ kind of like a rock star in the Arthritis Foundation world. And, he is a big part of the reason I’m here at this summit.

Dinner includes a sort of pasta and alfredo sauce. There’s also pizza, which is most likely for the kids, but I take a slice too. Joanna and I find a table with some empty seats.
I’m a naturally chatty person; I have the gift of the gab. Across the table I meet Jennifer, who is here from Maryland. Actually, she can just drive in, since technically she is from the DC area. Jennifer is a young beauty, pale, porcelain skin, deep brown eyes and long dark hair. She accentuates these features with a pink turtleneck sweater. We chat about why we are here. Jennifer tells us about having her neck fused.

Next to her is David, from Indiana. David is forty (I find this out later) but looks much younger than this. He has a friendly face and a well-groomed beard. He’s and engineer working for a major drug company. He tells us he has had arthritis since he was a child.
I tell a bit about me, but mostly we talk about the day, the overwhelming nature of sitting in the classroom trying to learn everything. We talk about how bad weather is coming; we’ve all heard about it over the break. We munch on our dinners, hit the dessert table. I drink a decaf coffee.

After most people have had a chance to eat, the kids are shuffled off to another room for an ice cream sunday party. The evening’s presenter is announced, Dr. Tuan.

I had thought that maybe I could slip out early and not sit through another presentation. I’m tired. It’s been a long day. Dr. Tuan begins, and to my amazement I forget that. He’s a compelling and engaging person, even though what he is presenting is way above my scientific understanding. His talk? Cell-based Tissue Engineering Approaches to Cartilage Regeneration.

In English? Dr. Tuan is figuring out ways to repair joints without the current replacements. He’s growing bone and cartilage in a lab.
He’s a slight man, with glasses and an authentic smile. He’s also at ease with the microphone, something I had not expected from a researcher.

He talks about using mesenchymal stem cells in his research. These ARE NOT from embryos. In fact, there are many kinds of stems cells that can be researched and embryonic stem cells are only one kind. Mesenchymal stem cells can be found in all sorts of tissue and can be extracted from bone.

Dr. Tuan explains that they have to make a kind of scaffolding to take the mesenchymal stem cells and grow it into bone. “We’re building a house,” he explains, “and then we invite the cells to come in. The cells come and put in their furniture and rearrange themselves and multiply.”

He makes it sound so easy even though it happens on a nanoscale level. He shows us pictures of the samples he’s grown in the labs. His goal? To help the body regenerate tissue damaged by arthritis rather than use artificial replacements. “The body doesn’t always respond to metal joints,” he says. He is passionate about regenerating joints – this is his life’s work. I feel better knowing that folks like Dr. Tuan are coming up with this stuff. He has a sort of way about him that makes me think of Steve Erwin, the “Crocodile Hunter.” I expect for him to say, “Crikies!” at any moment.

The Arthritis Prevention, Cure and Control Act will ensure that folks like Dr. Tuan will continue their research.

After the presentation, I’m tired and ready to go back to the room to relax. Joanna has been eagerly waiting to watch The Oscars, something, she tells me, she does every year. We turn on the television, I half watch, scribbling in my notebook. I call my husband to check in. Matt’s been doing home improvement projects all day while I’ve been gone.

“I miss you,” he says. “Emmie misses you too.” Emmie, our beagle is sitting is his lap. He doesn’t have to tell me this, it’s something I know. I’ve been gone less than 24 hours but in this moment it feels like days have passed since I’ve seen them.

Joanna and I agree that Cate Blanchett is the most glamorous looking star at The Oscars this year. Dressed in a golden gown, she looks like the stars of old – pretty, glamorous, full of promise.

Monday, February 28, 2005

9:15 am

We are supposed to be paying attention, but I’m scribbling in my journal again.

This morning we have presenters and this afternoon is our debut on The Hill. Or first presenter is Mark Shields, who I guess is a famous political pundit. Being notoriously non-political, I have no idea who he is, but I think he has a show on CNN or something. So far, he’s talked mostly about the war in Iraq and I’m not making the connection about this and what we’re here to do. Maybe I just don’t get politics.

We are sitting in the big ballroom/classroom again and Stephanie is to my right. I like that we’ve met up with her again – there is something so reassuring about her presence. I have a coffee and a cough drop, pen poised and my journal. That’s as prepared as I can be.

I notice that Joanna is making notes; not about the Shield’s talk but about what she is going to say on our visits. Dressed in a black turtleneck, skirt and silver bead necklace, she has a determination and professionalism about her that I find impressive. I need to be more like Joanna, I think, if I’m going to do this advocacy thing the right way. I silently thank Nick for getting the okay to send both of us. Alone, I would be lost.

After Mark Shields, we have a cluster of presenters – former congressional staffers and a man who helped get legislation passed for ALS. This is interesting to me because it seems more relevant to what we’re here for. I wish we could role play some more, like we did during the Soapbox presentation. The former dancer in me longs for a dress rehearsal.

We are told that we will meet with mostly staffers. Congresspeople spend Mondays and Fridays in their districts and then come to DC for Tuesday, Wednesday, Thursday. We are assured that the staff people are just as good, if not better, than meeting with the congresspeople themselves. I take this at face value – the staffers I met at the state level were less than impressive, but I’m willing to be open to the idea that this is a totally different scenario. Joanna says, “You want to meet with the health aid or the legislative directors. Those people can actually get something done.”

Between these break out sessions and lunch, we run into Jennifer from Maryland. She looks stunning – in a chocolate brown suit with chinoise trim and a turtleneck. She has a sly smile, she’s ready for action. “Good luck,” she says as we enter the line for our buffet lunch.

Posted by renee at 7:29 AM | Comments (0)

March 10, 2005

Diary of A First-Time Arthritis Advocate - Continued

The story I told during our “advocacy exercise” was much shorter, more abbreviated than this one. But if I could tell my story, to fill it out a bit for more than just an advocacy effort, this is the story I would tell.

My Story

When I was 22 I was diagnosed with rheumatoid arthritis.

When I was a little girl, I was like many other little girls, I dreamed of being a ballerina. This doesn’t make me unique; in any year I’m sure tens of thousands of little girls dream of being a ballerina, painting their rooms bright pink with satin slippers sewn on the linens. Moms enroll them in classes; purchase those Barbie ballet bags, which are really stiff boxes with a shoulder strap and separate compartments for their slippers. The little girls, like me, pull their hair back into a neat bun at the nape of the neck, revealing fresh, expectant faces. Ours are the dreams of tutus and tiaras.

But what is unique to me from the thousands of other girls who once dreamed of stages and costumes and pirouettes on pointe is that I was willing to do whatever it took to be a ballet dancer. Teachers were quick to point out my faults – “You’ve got great feet, but need to work on your flexibility” - but what I had more than anything was determination. I was willing to commit myself wholly to the world of ballet and make it my world.

I kept journals. I cut out pictures from Dance Magazine of the dancers I wanted to be like. I wrote down the things I wanted to improve – higher extensions on developées, double pirouettes - and tracked my progress. I wrote down my feelings – I’ll never be as good as her; if only I could make my ankles stronger I’d be better one pointe; she said I needed to shed a few unwanted pounds, but how? I gave up on football games and cheerleading and dances and drama club. Those were for others. Instead I fit in an extra class and fell asleep, face first, in my chemistry textbook.

There was some success. I was probably never destined to be a prima ballerina for New York City Ballet or American Ballet Theatre. But I auditioned and made training schools and companies. I studied away from home. I took roles in The Nutcracker, Sleeping Beauty, Cinderella.

Unlike the dreamers, I was a do-er!

A dancer knows that at any time her body could give out. Between the ages of 19 and 21 this was happening to me and I couldn’t understand why. I was too young. My teachers and artistic directors thought I was lazy, that I didn’t care anymore. I went to a sports medicine doctor and he put me on rest for six weeks and painkillers. I was depressed.

My mother, who I often fought with growing up about the importance of ballet over a traditional education, had kept me in school. This became a sort of salvation, a break in the routine of being sore, in pain and frustrated. I tried to think of what I was good at in school. I decided to take a poetry class. The English department of the university where I was taking classes suggested I take Intro to Creative Writing instead. I was a little discouraged – I loved poetry – but thought it would be an okay replacement.

Of course it was better than a replacement. I think perhaps, it was fate, or God. It was something beyond my ability to choose, but within the scope of being able to be guided.

The class was taught by a writer named Susan Neville, who literally changed my life and view of myself. Susan showed me my inner writer – that former ballet dancer who scribbled everything into notebooks – and she showed me how to take the discipline of my earlier days and put it into this new vocation. She might not know that she did this for me, but she did. I spent hours every day writing. I read books she recommended. I listened to her, enraptured, as she ran workshops, read from other’s work and her own.

Success came in new forms. I received a scholarship for my writing; I published a little. I graduated with honors with a degree in English and concentration in Creative Writing.

I don’t know if life typically gives us second chances, but I think I had a second chance at being whole. A second chance at being creative.

I miss ballet – it was all I knew or wanted to know for so many years. The dancer in me never dies but the ability has completely. I have grieved and mourned this fact for ten years. But I would never give away my writing to have back my dancing.

In the end, my official diagnosis of rheumatoid arthritis came in an unlikely way. One evening I sat reading. My legs were stiff, my knees and ankles visibly swollen. The pain was intense. I can’t handle this anymore, I decided, and got into my little red Saturn and drove to an urgent care facility. The doctor, a middle aged black man with a gentled touch and reassuring face, told me he had recently seen a lupus patient. “You might have something like lupus,” he said. “I want you to see a rheumatologist.”

He set the appointment and sent me home with an anti-inflammatory, which worked to a small degree but the swelling was still present when I went to the rheumatologist. All it took was one visit, one blood test.

On the one hand, there was closure, but also fear, sadness, frustration and uncertainty. Had it not been for Intro to Creative Writing, for Susan Neville, for my inner drive to succeed and years of scribbling in a journal, I might have lost it. I might have been nothing more interesting than a statistic.

People like me need care and medicine. We often need handicap parking, aids for walking, workplace adjustments. But what we need most is hope. Hope is what keeps you really living. Hope keeps you ever present in the world.

My name is Renée, which is the French word for “reborn.” I was born to dance and destined to write. I am still writing.

Posted by renee at 10:01 AM | Comments (0)

Diary of A First-Time Arthritis Advocate - Continued

Sunday, February 27, 2005

Afternoon

We get started with our “program” with speeches by various people from within the Arthritis Foundation. I know this is standard fare for this kind of thing, but really I don’t quite get the point. I don’t feel inspired by it. I don’t know these people and they don’t know me and certainly all this is for ceremony’s sake – we’re not getting information about advocating by listening to this person or that person. I’d rather listen to the other people in the audience and understand why we are all here.

After a couple of these intro speeches, we get into the advocacy agenda. The two main presenters of this information are Kevin and Jennifer. Kevin is the Sr. VP for Advocacy for the Arthritis Foundation and currently has a whopper of a cold. Jennifer looks to be about my age – early 30s, and is the VP of Advocacy for the Arthritis Foundation. Seems like a lot of designations, but what do I know.

Even though Kevin has a cold, I like him better as a presenter. Jennifer seems to know her stuff but comes off as glib. We talk a lot about kids who have arthritis, which is very touching. Having the benefit of a “normal” childhood, one without arthritis, I can’t imagine what they go through.

But on the other hand I am made to feel, during this presentation, that it doesn’t really matter so much that I have arthritis. My story isn’t what they care about or are looking for. I’m sure this isn’t what they mean, but it is how it comes across. You, Miss Adult, don’t count as much. You’re not a good photo op. Of course this is never said but it is how I feel as I sit in the back of the ballroom. I wonder if anyone else feels this way.

The one piece of information that sticks out to me, that makes my stomach drop ad makes me want to cry, is this: 50% of persons with RA stop working within 10 years of diagnosis.

I know that the legislative angle is to put people back to work, get them paying into the system. But there is a harrowing side of this, harrowing to me anyway, which is the feeling that you’re just a vegetable, that you can’t contribute or count anymore. This scares me. I want to count. I don’t want to think that arthritis is going to make me the kind of person who isn’t productive and meaningful.

At the break, I meet up with Joanna, and just seeing her familiar face, the jaunty wisps of blonde hair and her quiet smile make me feel better.

Joanna and I make friends with the woman sitting next to me, Stephanie, from Oklahoma. Stephanie is the kind of person who it is easy to be around, even if you’ve just met her. Pure kindness seems to radiate out of her, and I think it might be her eyes, large and brown and a bit like a doe. We find out she works for a chapter of the Arthritis Foundation in Oklahoma and this is strangely and wonderfully reassuring. There is something about her that encourages ease, and we strike up conversation with her.

Feeling better, I venture into the lobby with Joanna in search of coffee.

Soapbox Consulting

Our next round of informational sessions on how to be effective arthritis advocates is run by an outside consulting firm called Soapbox.

Christopher Kush is the President of soapbox and is one of those well-dressed guys with bubbling enthusiasm. And although it feels a bit fake to me, it’s not glib, and so I kind of go along for the ride, which is easy to do from the back of the ballroom. Let it all wash over you.

The point of his presentation is to keep us “on message.” This means we need to get our legislators interested in signing on to the Arthritis Prevention, Cure and Control Act of 2005, which we covered with Kevin and Jennifer. But instead of giving us an overview of policy, we get a dose of grass roots communication.

Basically, what we are taught to do is make either a formal argument for the bill or tell a personal story. The format is simple: hook, line, sinker.

I am always a little suspect of clichés, but the hook, line and sinker basically is this – you introduce yourself (especially if you are a constituent), you tell your story or make your talking point in argument for the bill (according to Christopher, a personal story is an implicit talking point for the bill) and then you make a request – that is ask for them to be a co-sponsor.

He picks two people from the audience as volunteers for each approach – formal argument and personal story. He deliberately picks a person whose personal story he knows – a mother from Wisconsin whose child won a contest by Oscar Meyer. She and her son, who has JRA, wrote an essay saying what they would do with the Oscar Meyer Hotdog-mobile and $5000. They wrote that they wanted the Hotdog-mobile at their town’s Jingle Bell Run for Arthritis to help increase awareness. And the $5000 was to come to advocate here.

I thought this was a heartfelt story; the mother made a great case because she and her son, did something to try to make a difference. And she wasn't on a script. It was real.

I also knew that to be most effective, these stories should be worked on and crafted – that some of the most important details were probably the ones that never got into the story. This, I know, from being a writer. I thought for sure they would work with us on this.

Instead, they broke us into groups. One person in the group left the room to learn to be the part of “The Senator” the rest of us were to come up with our argument or personal story.

Joanna told our group, “Wait until Renée tells her story.”

Posted by renee at 9:19 AM | Comments (0)

March 5, 2005

Diary of A First-Time Arthritis Advocate - Continued

Sunday, February 27, 2005

7:19 am

Up at 6 am to catch my flight. Even before the RA I have never been a morning person and now with RA I’m even less of a morning person than before. So Matt stops at Caribou Coffee to get me a large skinny latté for the ride to Columbus International Airport. I manage to dribble a little on my coat, a pea coat that is thankfully black. I try to sop it up with a little napkin with a Caribou Coffee “Espresso Truth” printed on it. A day without coffee is alike a day without coffee.

I made it through security O.K., with the taking off of shoes and all. This is mostly because there were not tons of people taking off early Sunday morning. The shoes thing, while necessary, is a big pain in the butt for those of us with joint issues. I should have worn slip on shoes, but even then it’s not easy with a swollen knee. But I don’t begrudge the airports the security check… it’s just difficult, that’s all.

Maybe they could have a “special needs” line so we wouldn’t feel like we’re holding everyone else up. Of course the woman in front of me has two overstuffed duffels as carry-ons, while I have only a seek tote.

They did have chairs to sit in during post-security re-assembly, which was nice.

My flight doesn’t take off until 8:05, but I’m happy to sit and wait.

8:14 am

In flight. As a snack I’m offered a tray loaded with packets of mini-pretzels or a biscuit/cookie type item. I select the latter, something with the trade name “Biscoff.” Incidentally, Biscoff’s wrapper shows that it has a website, Biscoff.com. Everythign has a website now, including the cookie/biscuit type airplane snack. Cyberspace certainly did blow the world open to every and all possibilities and in turn is populated with everything conceivable. This seems to be a weird thing for a blogger to contemplate, since I put my ongoing inner narrative into cyberspace and I’m wondering if it is healthy to take a break from my computer.

Actually, I’ve taken to naming my computers; my current computer is “Gatsby.” I wonder if my Gatsby dreams on the green light at the end of the dock like the Gatsby of Fitzgerald’s book did.

I feel like I should be reviewing some political policy or new arthritis breakthroughs while in flight, but honestly I don’t have that kind of material, it’s too early, and I’m still worried about my knee. So I munch down my Biscoff and wash it down with a mini-bottled water with the Delta Airlines logo on it.

10:15 – Fairmont Hotel, Washington DC

This hotel is downright swanky!

After checking in, I went through all the cool amenities in our room. Joanna and I are sharing a room, she is not here yet having spent Saturday visiting with friends and family in the area. The bellman set my little roller suitcase on a stand next to valet, where I hang the blazer I intend to wear on the Hill tomorrow, and carefully drape my pants and skirt so that hopefully they are not wrinkled beyond repair.

The bathroom is large and has a scale (I still weight 125 lbs, the weight I’ve been pretty much since I quit dancing and was 110 lbs and considered, “chunky.” I now am still weight conscious enough to always step on the scale - the old habits die hard and in my soul there is still a part of me that is a dancer. Occasionally I dip down to 122 and up to 128, but almost always right about 125 lbs and 5’5”). There a little bottles of shampoo and bath gel emblazoned with the hotels ornate “F.” There is also two fluffy bathrobes, plush white terrycloth with gold corded borders and embroidered with a crest-like golden script “F” like on the bath gel bottle. I slip one of the robes on over my clothes just because I can.

Back out in the room I leaf through the in-room food service and am somehow excited by the idea that for $15 I can order gourmet macaroni and cheese to my room. This is inordinately exciting.

I end up taking a shower because I want to play with all the room’s features and feel that layer of travel grime over the surface of my skin. There is nothing like a hot shower after flying and travel. Even the tension in my knee loosens and I feel a little bit like a celebrity with a towel around my head and the big fluffy bathrobe edged in gold. I slip on my big oval sunglasses and look out the window into the sunny morning.

After getting primped and dressed, I got to the lobby to sit and write and people watch. First I go to the hotel gift shop and buy two postcards – one for my husband and one for my parents, write a few lines and give them to the concierge to send out. I’m only gone for three days and two nights, but it is my habit to send postcards, especially to Matt, whenever I am away. It makes me feel better than being apart from him.

I have a tea in the lobby and camp out in a lavish wingback chair near a large window looking out to a courtyard with topiaries. I can’t tell if I’m surprised or impressed that this is where the Arthritis Foundation is having us all meet for the national advocacy summit. The tea I’ve picked is peppermint and is soothing and warm to my tongue.

I love hotel lobbies like this, fully of the dull hum of chatter, the coming and going, the anonymous feeling of sitting and observing. This is where the writer in me feels like she’s in her heyday.

A cluster of people sit further down the lobby from me, set up on wing backs like mine and a couch/settee type thing. Two women, one young, one old, and three men, two younger-middle aged, the other grayed well. The young woman sits as if holding court, a thin elegant type woman smoking a long cigarette between her fingers. It surprises me to see her smoking, which is odd because I don’t know her. Smoking seems like something from another era, something that is out of place in public unless it is a panic-stricken alley smoke, hidden and contraband.

This cluster of people converse in a language I don’t recognize.

Two other women walk down the long expanse of the lobby. As they pass me, the comment on the décor. “It’s good design,” says the one to the other.

I think the lobby is rather opulent, although I must admit that I prefer mid-century modern and so my view is tainted by this preference. It strikes me as odd that I’m thinking about my design preferences instead of focusing on why I’m there – arthritis advocacy. But that doesn’t get started until 1:30pm, and I have this morning to just be in the lobby of the Fairmont Hotel. And the lobby says to me “luxury,” with its sense of being away from home and in a capitol city. It looks the way I imagined the Vice Presidential mansion from Ann Patchett’s novel, Bel Canto.

I have a way of always relating things in life to stories and books and movies. My imaginary life and my real life blend together.

Someone in the lobby is smoking a cigar, even though there is a sign asking guest not to do so. I can’t see the smoker but the smell of a cigar is distinct – sweeter and fuller than cigarette smoke.

By the concierge is a little dog house and on a leash is a black lab. She begins to bark. This seems like an odd thing to happen in the lobby of the Fairmont. I go up to see the dog and see that she is the hotel’s service dog. Her name is Maggie. Maggie comes right up to me and her handler at the concierge station says, “You must be a dog person.”

I nod. “I have a little beagle.”

“Those dogs are so cute!”

Immediately I feel homesick for Emmie, even though I’ve been away only a few short hours. I feel far away from my dog and my husband, from my little house and my quiet life inside it.

1:20 pm

I’ve taken a seat in the back of a ballroom where we’re getting ready to be primed on how to advocate. I’ve gotten a tote bag full of stuff and a name tag, so I suppose that makes me official. I put my tote on the chair next to me to save it for Joanna. We’ve not met up yet, but she said she wouldn’t get in until later so I’m not worried. Plus, she has my cell phone number, so I figure she’ll call if we don’t meet up soon.

A man is duct taping some wires to the floor in the isle. The ballroom is set up with rows of tables and chairs. The room hums with the chatter of people who know each other. Currently I know no one.

In the front of our ad hoc classroom are two enormous screens, and then row on row of tables and chairs becoming more and more full.

A woman asks if she can sit next to me and I say, “Sure” and she puts her tote and coat over two chairs next to her because, like me, she has not met up with the people she knows.

I have not found Joanna at the time the session begins. In a way, it feels good to just get this thing started, although I feel anxious and I’m not sure if it is because I haven’t met up with her or just because the real reason for my visit has started and I feel vague and small in a room filed with people.

Posted by renee at 10:58 AM | Comments (3) | TrackBack

March 4, 2005

Diary of A First-Time Arthritis Advocate

Saturday, February 26, 2005

8:45 pm

Have just taken another shot of Enbrel. My right knee seems to need it - it’s puffed up like had slipped half a grapefruit just under the patella and looks like its swelling and squashy under there. Blech.

Have packed a little roller-suitcase of clothes and essentials. The essentials include all sort of sample sized items from a pre- travel Target shopping spree, and other good stuff, including:

A mini bottle of Scope
A tiny “Morning Burst” facial wash – with micro beads (sounds like fun!)
A tube of Colgate Total Plus Whitening in travel-size
A new toothbrush
Oral-B Brush Ups (in-between meals brushing solution – just fit them over you index finger and polish away)
Extra sugar-free gum in Wintermint
(I think my travel purchase show a slight fixation with oral hygiene. I like to think of it as having my smile picture-perfect for snapshots in government offices)
Razor
Miniature bottle of Herbal Essence Shampoo and Infusion 23 leave-in hair treatment (for shinny, healthy locks!)
Travel Sized Soft ‘N Dri Antiperspirant/Deodorant in Baby Powder scent
Trial Sized atomizer of Beautiful perfume by Estee Lauder (not from Target, but left from a prior gift with purchase gimmick by the cosmetic counter)
Travel first aid kit
Glysomed hand cream and Lubriderm Sensitive Skin Therapy for Dry Skin
A tiny pallete of eye shadow
A tube of Almost Makeup, SPF 15 by Clinique
Stilla Pressed Powder
MaybellineWaterproof Mascara with mini wand
Chapstick
Three tubes of lipstick and one gloss
Trail mix
Snack sized peanut butter crackers
Black sunglasses
Clothes for the hill (business casual)
PJs
Jeans – just in case there is any time to hang out
Flight and hotel info
My journal
The novel I’m currently reading
Pictures of my husband and my dog
Digital camera
Vitamins
A prescription bottle of prednisone (just in case the swelling doesn’t quit or gets worse)

How I fit this in a tote and a little roller suitcase, I have no idea. But there are peanut butter crackers stuffed in a pair of my shoes.

I’m worried about my knee – it’s been swell-y and weak for the last couple of days and I don’t know that tromping about Capitol Hill is going to make it much better. I have a fear building in the pit of my stomach about representing my local chapter of the Arthritis Foundation in Washington. Sure, I’m going with Joanna, who’s been before. But what do I know about advocating but one day at the Statehouse (with naive expectations). I’m not even a very political person (a friend actually asked me this week if I knew where Capitol Hill was. Very funny. I’ll have you know I voted in the last election, too).

But what if I screw up?

The Enbrel shot goes as well as expected. The needle sinks into a roll of skin I’ve pinched in my thigh, and I depress the medicine under the skin. Some time pulling the needle back out is worse than plunging it in, but I try not to think about it, have a cotton ball and band aid ready.

My husband Matt has purchased me the collectors DVD of Chariots of Fire. This is one of my favorite movies and so I decide to watch it before falling asleep, hoping to be inspired. It’s the story of two Olympic runners and what drives them. One is driven by his desire to overcome what he feels is the stigma of being Jewish. He feels denied and uses running to prove himself. The other is a missionary who feels that he honors God through his running. The latter is more inspiring, but the first is probably, if I’m at my most honest, most like me. Always something to prove.

I found out, by checking out all the extras on the DVD, that the actor who played the missionary/Olympic runner is dead – and quite young (the credits say 1949-2000). This makes me sad. His character in the movie, Eric Liddell, refuses to run in his 100 meter qualifying heat on Sunday because he believes it is the Lord’s day. While showing the other runners, the movie voices over his sermon, from Isaiah 40: 31

But they that wait upon the Lord shall renew their strength;
they shall mount up with wings as eagles;
they shall run, and not be weary;
and they shall walk, and not faint.

Sometimes I wonder if I will ever renew my strength. But I like the idea of this passage, and Eric Liddell’s devotion. He ends up winning a gold medal for the 400 meters, an event given to him to run so that the English Olympic committee can save face. In a surprise to everyone but him, he wins.

I like the idea of this too – surprising everyone and winning.

So before I drift off to sleep, before I panic that I won’t wake up early enough to catch my flight, before I decide that I have no business being an advocate because I don’t know much about the process, I think about Chariots of Fire and wonder what winning is in my world.

Posted by renee at 2:18 PM | Comments (5) | TrackBack

March 1, 2005

...And the life you lead after that

(picture of me in my late teens, warming up in the ballet studio)

“There’s the life you live, and then there’s the life you live after that.” – from the movie, The Natural

I’ve returned from my trip to DC and this quote from The Natural is stuck in my head because I feel like that is what I was there to do – tell the legislators and staff that life I led before RA and then the life I lead now that I have been diagnosed. I will be writing about this more and more, I am sure. But for now, I want to share this picture, which illustrates more than I could ever say.

I’m really worn out. But over the next days I will write in full about my experience on Capitol Hill, which I’m pleased to report was very enjoyable as well as eye-openeing. Things work differently on The Hill.

I’d like to thank all the people I’ve met with over the last couple of days, including the following:

From Deborah Pryce’s office, Shiloh Roehl
From Pat Tiberi’s office, Adam Francis
From Steven LaTourette’s office, Ryan Berger
From Sherrod Brown’s office, John Sawyer

These legislative directors and aids were all kind, knowledgeable and sincere. They listen to our stories and request with interest and compassion. They were helpful and informative.

I’d also like to thank Abby from Senator De Wine’s office and Neil from Senator Voinovich’s office for meeting with us and for listening and sharing their thoughts and recommendations.

I also am very thankful to Senator De Wine for meeting with us, and in particular listening to my story and for agreeing to look at the newly introduce Arthritis Prevention, Control and Cure act sponsored by Senator Bond’s and Senator Kennedy’s offices.

In the next couple of blogs you will hear stories about three days of meeting with legislative offices and connecting with other patients with arthritis.

I want to offer a couple other thank you’s to the folks I met and worked with these past few days:

Stephanie from Oklahoma, David from Indiana, Marty and his mom from Pennsylavania, Lori from West Virginia (A Mountaineer Is Always Free!), Jennifer from Maryland, The fabulous crew from the Ohio Valley chapter of the Arthritis Foundation, Monica from California, Leona from Florida, and all the others. You are all fabulous and have importantly have wonderful heartfelt stories to tell.

I also want to thank Glade Pauley from Hudson Ohio, who I was privileged to attend every legislative visit with, who was ceaseless in his ability to be generous, helpful and compassionate. You were tremendous!

And most importantly to Joanna, who got me into this (yeah!) who is a wonderful woman, and accomplished veteran on the hill, and who is beautiful in every way.

I must rest now, but the stories to come this week will make you think, make you feel and hopefully make you want to be involved.

Posted by renee at 2:51 PM | Comments (2) | TrackBack