RA can be Isolating. Even with loved ones, we might feel lonely because they don’t know what we’re going through. Our friends can’t visualize the ice-pick that’s stabbing us or appreciate what it’s like to move around in cookie dough all the time.
Being alone is not all bad, but feeling cut-off sucks
Being alone can be pleasurable, too. Like walking on the beach or driving with the windows down on a beautiful day.
When we were teenagers my brother used to ask me “Whaddya mean we? You got a mouse in your pocket?” The best translation is probably: bug off. But somehow the insinuation of my being alone except for an imaginary rodent was a pretty successful insult. Who wants to feel cut-off, especially as a teenager? He must have known how well it worked since I heard it often.
Yes, Virginia, there’s a mouse in my pocket! Here’s why…
Since I need help, I don’t travel alone; either Katie Beth or a friend accompanies me. In September, I was fortunate that my dear friend Nancy traveled with me to the E-Patient Connections conference in Philadelphia. I had first met Nancy in a comment on my blog about two years ago! Her words reached out to me and I felt validated and connected. I hoped I’d one day meet her, having no idea we only live two hours apart. Meeting friends like Nancy is obviously one of the best things that has happened to me because of RA.
But, another one is actually the mouse Nancy gave me!
Nancy gave me this soft little mouse a few months ago. When I got into the clinical trial we laughed about feeling like lab rats. She probably just wanted to give me a cute reminder that I’m loved, but she had no idea how effective it would be.
One year ago, I reached the end of options with my rheumatologist, being told to “wait for something new to be approved.” I considered trying Rituxan, but the doctor didn’t prescribe it any more. If you were reading the blog, you know I was hoping to get into a clinical trial. Pretty desperate for options, my friend Jamie gave me stern advice, “Make your doctor understand how RA has affected your life. Take me and your RA family into the office with you. Speak to the doctor as if you are speaking to me.”
Jamie had hit on the most essential side effect of this blog: Knowing we’re not alone.
I’m not alone. And you’re not alone either.
It’s different with a mouse in my pocket. I know I’m not the only one with my symptoms, side effects, questions, or fears. Whether I’m on a stage with big lights and cameras in my face or getting an IV of Rituxan faster as an experiment, I’m not alone. Spending too much time waiting at pharmacies and labs, I’m not alone.
The mouse can’t quite fit in my pocket, so she rides in my worn briefcase. She has a special place in my professional patient rolling briefcase alongside my laptop, meds, snacks for meds, neck brace, socks, business cards, and pillow. She reminds me I’m not alone.
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