Reclaiming Life

Living with rheumatoid arthritis (RA) has been unbearable for the better part of the last year. There was no extended periods with a sense well-being.  I was in fact  I was so close to quitting that if my daughter wasn’t here, I don’t know that I would have kept fighting the good fight.

I am celebrating huge victories these days and it all started with Pokemon Go.  The ladies at work had downloaded it and so did I.  The first day, my co-worker and I spent our lunch hour searching for Pokemon.  But this isn’t a story about Pokemon, not really.  It just engaged my motivation.

After that first day, I began lapping the block at work.  It took me 15 minutes the first few times to make it .4 of a mile. I was huffing and puffing all the way.  It was incredibly painful and my back hated me.  I thought I might collapse. But I wanted to hatch my Pokemon eggs and get more pokeballs, so I kept walking.

That was three weeks ago. Today, I can lap that block in about 8 mins or fewer, so I’ve had to extend my route to almost a mile.  It feels so amazing to have made the loop bigger.  The huffing and puffing is  nearly gone and the hilly landscape of San Francisco is not as daunting.  I can take on hills again, not huge ones, like  the one Lombard Street, but smaller less intense inclines.  I never thought I’d be able to go up an incline again without feeling like my legs would collapse and my back would give out.  And the miracle of all, I can stand on BART for the 40 minutes it takes for me to get from my stop at home to my stop in the city. Why is that a miracle? Just a few months ago, standing that long would have resulted in swollen feet, a backache and real tears coming out of my eyes.  I have actually had people give up their seat to me because the agony on my face was too much for them to bear.

This tale isn’t only about how a game motivated movement and better quality of life, but about a fight to get my life back.  When I was first diagnosed with RA, I had a really bad rheumatologist and an HMO. She gave me a starter dose of my current medication, but I didn’t feel as though she cared about my story or my needs as a patient.  I have been actively involved in my health care since I was a teenager because I lived with a few health conditions all my life.  For me, a doctor must understand that I hate pills.  I’m scared of any health issue that’s more than a migraine. And most importantly know that I am not dumb, so don’t dumb the treatment or the disease down.  She did none of this.  So, I stubbornly, never went back. I refused to do her testing. I just gave up!  I resigned to the idea that RA would always hurt and that I would never enjoy parenting or life the way I wanted to.

It took my mother having a life-threatening health issue to make me see the error of my ways.  She was treated at a VA hospital with world class doctors.  I watched them treat my mother and was amazed at how they partnered with her to improve the situation. They talked with her and not at her. This is when I realized that my doctor was not only not for me, but that health care didn’t have to feel like torture.

So I set out to find world class doctors in my HMO plan! It was was a chore of course.  I had recommendations from co-workers, Health Grades, Yelp and Blue Shield doctor directory to wade through, but I finally settled on a health group.  I settled on this group because of their education and dedication to research. I knew that these doctors were serious of about healing.  I read their bios on the health group’s website and chose doctors with similarities to my own personality.  It felt good to be in control of my health.

My new rheumatologist is amazing.  He’s soft spoken, but knows his stuff.  He stops and listens for my health goals.  He asks the right questions to get the answers he needs to treat me best.  I’ve only seen him two times and he’s altered my medication and I feel almost pain free. Yes, there are still bad days, but now there are more days with victories.  More days where I achieve my goal of 9,000 steps.  More days where I sing instead of wonder when I will cry next.  More days when I believe I could go dancing all night like in the old days and not be a spectator like I had become.

Today, I’ll take my daughter to an amusement park with her godsisters and walk around without needing to sit down most of the time.  I will be able to show my daughter ballet steps whenever I have an opportunity.  And I will keep lapping blocks until I make a 15 minute mile! It’s a fabulous feeling to have my sense of well-being back and not feel defeated by RA.


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