In My Shoes

Have you ever imagined how it would feel:

– To require an assistive device to open a jar?
– To be unable to grip a pen or a fork?
– To ask for a child’s help opening a toothpaste tube or bottle of water?
– To be stuck inside a room because you can’t turn a traditional doorknob?
– To cancel plans with friends because you hurt too much to get out of bed?
– To pack a cane every time you leave the house, just in case?
– To shop for a wheelchair as backup for days when you can’t walk at all?
– To eat healthy foods and gain weight uncontrollably because of the drugs you take?
– To inject yourself with medications weekly?
– To require a seat for your shower?
– To purchase a “days of the week” pill sorter to keep track of your meds?
– To endure stares and comments when you park in a disabled spot, because you don’t “look” sick?
– To be unable to move when you awaken each morning?
– To endure a monthly IV infusion for the rest of your life?
– To smile through tears when you encounter a firm handshake or embrace?
– To be unable to wear half the shoes in your closet because the heels are higher than 1”?
– To regularly face drug side effects, including headaches and bouts of nausea?
– To battle extreme fatigue on a daily basis?
– To watch from the sidelines while your child plays in the park?
– To be told you’re too young to have arthritis?

I never did, until I was diagnosed.  Now, these “imaginings” are my daily reality.  I put it all in perspective by remembering my blessings, but I won’t lie.  It’s a constant struggle.  If you know someone with RA, please remember to put yourself in our (very sensible and flat :)) shoes.  Awareness begins when our friends and family understand how this disease impacts every facet of our everyday lives.

The RA Rollercoaster

I’m a huge fan of rollercoasters.  My first “big” one was the Gemini at Cedar Point, which I tackled at age 8.  I was immediately addicted to the whole experience: pre-ride anticipation and fear of the unknown, alternating sensations of queasiness and exhilaration while on the track, and afterward, the pure adrenaline rush and that “veni ,vidi, vici” feeling.

Life with RA feels a lot like that.  Last Wednesday, I got my infusion after a two-week delay (a story for another post).  Finally, on Thursday morning, there was a sliver of light at the end of my flare tunnel.  After living with so much pain, I was ecstatic just to engage more fully in everyday life.  I was finally stepping out of the fear and queasiness of the ride, and into the exhilaration.

With tolerable pain levels and a bolstered mood, I spent the weekend enjoying both my productivity and downtime.  I grocery shopped, cooked, did laundry, shuttled Bear to practices, baked a birthday cake, spent a few hours at Disney, and enjoyed a meal with wonderful friends from Michigan.  Nothing too taxing or crazy – just a lovely and normal weekend.  (Okay, I know Disney isn’t “normal” for most, but I’m blessed to be an annual passholder that lives an hour away.) Overall, I suspect these activities sound similar to those that filled your weekend.

Last night, the RA rollercoaster track took an unwelcome turn, as my pain returned.  Over the last few days, I consciously tried to balance my activity with rest, but it wasn’t enough.  The physical pain is tough, but the emotional pain can be even tougher.  This morning, I find myself sad and frustrated that my body responded to “everyday life” as it did, and afraid that I may never break the cycle.

Since this disease is chronic, it’s easy (yet dangerous) to think of RA as a neverending rollercoaster.  If we do, we miss out on the end — the adrenaline rush of life.  Instead, I’m choosing to treat each day as a new ride, balancing my constant fear of the unknown with things I can cheer and conquer.  When I was in high school, my friend Paula and I rode the Gemini 23 times in a row.  Thirteen months past diagnosis, I’ve shattered my own consecutive ride record. I’m competitive, to be sure, but RA is one rollercoaster I’d much rather get off for good.