When I moved into my own place for the first time, I thought I had finally achieved heaven- true independence! Little did I know what was in store since my RA was just getting ready to announce itself.... read the article here at MyRACentral.com and then leave a comment. Do you live by yourself? If so, how have you adapted? What do you think are the drawbacks and the benefits?
Read all about how the Arthritis Walk in NYC went last weekend over at MyRACentral (and enter a contest to win$200 at CVS)! Thanks to all who contributed or took part in your own walk. Every little thing we do to spread awareness counts. The NYC Sick Chick Club raised nearly $8,000 AND won the team T-shirt contest!
© 2011, Thrive With RA™, all rights reserved. RA Awareness Ribbon Image © 2011, Thrive With RA™; campaign text and ribbon image may be copied as-is with express permission for RA Awareness use only — must include written reference to “ThriveWithRA.org” on all media where campaign text and ribbon artwork are used.
As many of you likely know, May is Arthritis Awareness month. Back when I started my blog, one of my main reasons behind was that I wanted to become aware of other young, single women my age who were facing down RA just like me. Like Field of Dreams, my theory was 'if you write it, they will come' and happily, that has been the case. I've even made some pretty great friends through my blog and will be walking with them next week as part of the NYC Sick Chick team in the Arthritis Walk (more about this later, but we are the #2 team and are only a few hundred $ away from being #1, so if you feel inspired to join us or to donate, click here!)
About a month ago, I received an email from a fellow single gal whose name is also Sara. After finding my blog, she was struck by the similarities between us- from living in Europe and New York to falling in love on the internet, right down to how we spell our name. Sara was diagnosed with RA at the ripe old age of 25 while she was living in Brooklyn. She's now 33, and in addition to RA, has also developed fibromyalgia. What fun.
In her email, Sara shared a response that she had written to a friend of hers about her frustrations at all the additional challenges thrown her way due to her twin chronic diseases. Though her friends know about her RA and fibro, they often 'forget' or don't realize what it really means- particularly as she is struggling to find more fulfilling work, but can't make a move or a change without that golden ticket of health insurance.
She's given me permission to share her response here on my blog, and I thought it would be a great example of how even people who know we have RA might not be aware of just how much it infects every area of our daily lives and the big decisions we have to make about our lives. Her words resonated with me as I have often felt the same sense of being trapped or hampered by what having RA means for me- a feeling of being held back and somehow eclipsed.
So, to kick off Arthritis Awareness month, here are some words from another Single Sara with RA:
I started writing a reply and my computer crashed. Thanks for clarifying. It's just that I'm very defensive about my circumstances. Of course I'm doing everything can while trying to be realistic and responsible. If things were different, my life would've kept going in the same trajectory of ten years ago, I assume. I lived in Europe, twice, worked for a legendary punk icon (for free), lived in Brooklyn, fell in love on the subway, fell in love on the internet, watched open air movies, did ashtanga yoga, took my shirt off for Richard Kern (do you know that story?) and all kinds of explosive stuff. Then one morning in Brooklyn I woke up and things were different. It's easy to be resentful and hard to be brave. I'm trying to be hopeful.
I so much appreciate your recognizing how I feel about my stifled creativity. Your suggestion of less pay for better environment and insurance is about where I'm at right now. I'm certainly willing to earn less money to be happier. I don't earn a lot now but if I had my needs met I'd be just fine.
As far as naltrexone, it's been generic since 1983. That's why no one's heard of it. This low dose application of it was a happy accident. Since generics don't earn big pharma profit, there's no investment in research. It averages $40 a month without insurance, which is cheap. Right now I'm playing with dosing. It can take months for people to feel the benefit, and even then there aren't guarantees. Some people feel perfect, like they're 20 again. Some people just feel better. Still, I'm hopeful. If I can get off most of my other meds, the ones I'll likely stay with are cheap generics. There will probably always be follow-up appointments and maintenance tests. I guess those can be managed if there aren't other hiccups.
For now I'm in limbo, trying to use my energy for good and not evil. I'm currently catless in New Jersey but all that can change. I'm exploring and sending out resumes. I'll keep collecting kitsch, crocheting, and cracking snark on Facebook.
Thanks for being an ear. It makes a difference.
My team for the New York Arthritis Walk, the NYC Sick Chick Club, has surpassed our team fundraising goal, but I've been a bit of a slacker and have not yet reached my own personal fundraising goal. This is the first time I've participated in a walk, and I'm excited to be doing it with a team of young, vibrant women who are serious about kicking RA's butt.
Being on a team with a group of women who have met one another largely through the online RA community is such a validation of why I began my blog in the first place, and through our presence at the walk, we will be doing more than raising money and awareness about RA- we'll be putting a whole new face on it.
A donation of $5 or $10 will help me reach my goal and kick RA's butt some more, so please consider putting your latte or cocktail money for today towards the NYC Sick Chick Club and the Arthritis Walk! You can donate here!
Thanks so much!
Anyone who has followed my blog knows I'm a shoe girl. Even if you are just visiting this blog for the first time, all you have to do is take one look at my signature photo on the right in sassy red heels to be clued in to this fact.
But today, I'm writing about a different kind of shoe than I normally wear. They have laces and a rubber sole, and would definitely be out of place at most parties or nights out on the town. But I'm writing about this pair of shoes because in a few months on May 15, I am going to strap them on for the Arthritis Walk in New York City as part of the NYC Sick Chick Club team! I've never done an Arthritis walk before, and when I was first diagnosed with RA and couldn't walk without a severe amount of pain, the idea of a walk for arthritis seemed a tad ironic and a little off the mark. Three years later, my RA is well-managed enough to let me walk a 5k, and I'm thrilled that I get to do it with some of the coolest sick chicks I know to help the Arthritis Foundation raise money to help all of us who suffer from autoimmune and other forms of arthritis.
If you would like to help the NYC Sick Chicks meet our fundraising goal (or even exceed it!), OR if you are in the NYC area and want to join our team for the walk, then head over to our team page here to donate, sign up, or help us spread the word by sharing the link on Facebook, your own blog, twitter, etc.
You can bet that the NYC Sick Chick Club is going to be out in our finest Sick Chick gear! I'll keep everyone updated as the date gets closer as well as updates on the walk!
Thanks for helping spread the word!
See what made me go SPLAT in my latest article at MyRACentral.com (comic by Jane Samborski).
Photograph by Jodi Mckee. All rights reserved.
Check out my first interview with photographer Jodi Mckee at MyRACentral.com and learn more about her Autoimmune Portrait Project.
Two months ago today, I moved into my new apartment in Baltimore! I can't believe it's already been two months. Granted, the first two and a half weeks I was in Egypt and Jordan, but still- that's a good chunk of time here in what's becoming my new home.
Things are going pretty well, I have to say. It's not New York, and there are tons of things I miss, namely my friends, but I love that New York is still close by. I've already been back one weekend and had a blast visiting all my favorite places and catching up with friends. On the train back to Baltimore, though, I realized how tired I was from the weekend and felt content to be heading back to a less stressful version of my life in Charm City.
Not that I've exactly made things as easy for myself here as I could have. I LOVE my apartment, and there is not another place I'd want to live, but it is on the top floor of a four story walk up. That's 68 stairs to climb at least once each day- often more. I could have chosen a modern building that had an elevator, a trash chute, a dishwasher, etc., but I couldn't resist living in an old mansion from the 1840's with hardwood floors, high ceilings, and a terrace that overlooks the Washington Monument (Baltimore's, not DC's) and a beautiful park, not to mention that it is about three times the size of my old Manhattan studio).
I realize I'm taking a bit of a risk and banking that my meds will keep working (knock on wood). But I figure, what is the point of feeling better, for the most part, if I'm still going to live as if I was sick? For better or for worse, it's not my style.
My job is going really well, and I have to admit, I don't miss working in crisis-mode at all. In my old position, I was constantly putting out fires and my time was not my own. It's a strange but wonderful feeling to be engaged in what I'm doing but not swallowed up in it. All of my evenings and weekends are mine to do as I please. For the moment, I am reveling in all my free time by immersing myself in another new perk: cable.
Yesterday, I went to my first yoga class at a new studio- Charm City Yoga. The teacher was great, and though the class was pretty difficult, I felt up to the challenge and even better when I left. The studio reminded me a little of where I practiced in London, which made me feel happily nostalgic. I'm looking forward to going back soon.
Driving is still a little bit of a learning curve. I don't mind driving itself, except for when I don't know where I'm going (which is, um, most of the time), and the parking situation is a bit stressful. I am lucky to have a parking space with my building so I don't have to scavenge for one on the street, but in order to get to the space, I have to open the gates from hell. Even if I didn't have RA, these would be difficult for me to open and close- I practically have to use all of my body weight to get them moving. With the RA, it's definitely not a pleasant experience for my fingers, elbows or shoulders, and again, if my RA acts up or takes a turn for the worse, I have a feeling I'll have to forego the space. Thankfully though, I don't have to drive every day since I'm in walking distance of work and tons of cute little restaurants.
Speaking of which, there is good food to be had here. Obviously it's not the same culinary scene as New York, but I'm not in danger of going hungry. In fact, I just ate a scrumptious meal last night at the B & O American Brasserie that included one of the best desserts I've ever had (pumpkin bread pudding = hello, lover.)
I have begun the ordeal of finding a new medical team. Luckily, one of my new friends here has hooked me up with her rheumatologist, so the wheels are in motion, and I have an appointment in a few weeks. I'm betting I'll have to go through the pre-authorization process with my new insurance for Enbrel, joy of joys, but luckily, I have a few extra shots tucked away in my fridge since I skipped taking them while I was in the Middle East. I'm feeling well overall, though I have definitely been very tired all around. Having every part of my life be brand new is exhausting in a way. My trip also left me with a big energy deficit that I am still trying to overcome.
Over the next few months, I'm looking forward to exploring Baltimore and starting to carve out a little niche for myself here bit by bit. I might even start (gulp) trying to date again. We'll see.
***
PS: Don't forget to watch Next Iron Chef America tonight at 9pm on Food Network and root for Chef Seamus Mullen!
Recent Comments