Archive for December, 2013
First off – happy holidays! I hope you survived, relaxed, and were mostly pain free.
I know the holidays with RA or other chronic conditions can be tough. Stress levels rise and activities are demanding. Our carefully tailored diets take a hit. The demands on hands are endless – gifts to wrap and open, jars, wine and champagne bottles that need tending to. Fatigue that hits when you least want it to…
All in all, I’m happy to say that my holidays were pretty good. Compared to some of the flares I’ve had recently, I was rather pain free.
As the new year approaches, I’ve been thinking about resolutions. Last year, being pretty new to my RA diagnosis, I was full of resolutions about how to keep my life and conquer RA. My resolutions were bold, but I’m happy to say I achieved a few big ones. I ran a marathon, I wrote a book, I donated 11 inches of hair that had been the same long style for nearly a decade.
Perhaps the boldest thing I did in 2013 was admit to others outside my closest inner circle that I have RA. It may not sound like much, but that was scary and very liberating. It took some time, but it means that I’m now not ashamed to admit that I have RA. Sure, I’m not shouting it from the rooftops, but if you ask, I’ll talk to you about it; if it’s relevant, I’ll bring it up.
So with all that progress, what are my goals for 2014?
It just so happens that the resolutions are similar. I’d like to run a marathon, or at least a half marathon, in 2014. This time, it’s not because I want to prove RA can’t stop me, but because having that goal, doing those training runs, and crossing that finish line made me feel powerful. As I enter 2014 with far more symptoms than I thought I’d have at this point, empowerment is something I know that I need. If not a marathon, than perhaps a triathlon of some length. Either way, 2014 will mean choosing a race and training.
I’d like to write another book. I’d like to do yoga more and learn how to meditate. I’d like to be even more bold and do the Run for Arthritis. I want to travel more. Most of all, I want – and let’s put it down in writing so that I remember – to not resign to RA, to pain, to drug regimens, or to feeling different or incapable.
My rad life is about much more than all that. It’s about big goals and big dreams. Not because of, not in spite of, but just in order to live life to the fullest. And that’s what I plan to do.
So cheers to an exciting, adventurous, big year. I wish all of you the best possible 2014.
When I first got on medication for RA, I took my methotrexate the day it was prescribed (at one of the most depressing and sober happy hours I’ve ever been to) and my Enbrel as soon as it was approved by insurance and shipped to me. I was so desperate for relief, I didn’t think about what day of the week would be most convenient to take 8 tiny pills that make me exhausted and slightly nauseous. Or which day would be best to remember to take my shot, meaning I needed to be by my refrigerator with privacy, alcohol swabs and an ice pack.
At any rate, I recently decided to maximize fun by cramming it into a weekly drug-fueled night of excitement on what is already the best night of the week: Monday. Just kidding.
Monday nights for me now consist of trying to get a kick-ass workout in after work – usually weights and hip-hop dancing. The endorphins boost my mood and working out makes me feel powerful. That helps combat the feelings of weakness that go along with being dependent on drugs, the confusion I sometimes feel when I swallow pills that I know are both a cure and poison, and the wimpiness I feel when I cringe giving myself a shot.
After that, I make myself dinner and settle in for a night of relaxing on the couch. This is only made slightly less relaxing by icing my leg while my shot warms up, then giving myself my injection of Enbrel. Dinner is only slightly less appetizing when the second course is 8 pills of methotrexate. I find that eating a lot before and a little after taking my pills helps with the nausea.
I also find that some good, distracting TV helps. 🙂
Anyway, that’s my drug day routine. What’s yours? What makes it more tolerable for you?
Also, for those of you that made it through my drug day rant, I have an Enbrel PSA: according to one of the Enbrel support nurses, the FDA has now approved Enbrel to be unrefrigerated (stored at room temperature) for up to 14 days. The only caveat is, once you take it out of refrigeration, it should remain out and must be used within 14 days. For anyone who’s tried traveling with Enbrel (especially on long overseas flights after FAA regulations no longer allow flight attendants to store passenger drugs in refrigerators), this is awesome news.
I was trying to find the post with my Enbrel travel story, but I either never typed it or it’s poorly tagged. I’ll tell it quickly here. When I was flying to Spain I had to take a three hour domestic flight, followed by a four-hour layover in Miami, an 8+ hour flight, a taxi ride, and not being let into our apartment for two extra hours. Needless to say, my ice pack thawed during my layover and my Enbrel travel case was soaked.
This meant tracking down plastic bags of ice in Miami. The best the flight attendants could do was give me a bucket of ice that turned into a cold, wet bucket of water that inevitably got all my carry-on items wet because it had to be stored under the seat but only fit beneath my feet. In all that travel time, the only place that allowed me to use their refrigerator to store my syringes of Enbrel was the cafe in Spain where we killed time. After that fun experience, this news is VERY WELCOME.