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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.