Defying Gravity

Today is Monday. The day all we get back in the saddle.  The day of aching ears, as we run a marathon of back-to-back-to-back conference calls (well, at least that’s true where I work).  Usually, it takes an extra cup of coffee to get through it all.  For me, it’s also the day I inject myself with methotrexate.  This medication was first introduced in the 1950s, and was originally developed as a chemotherapy drug.  Now, it’s also commonly used to treat moderate-to-severe Rheumatoid Arthritis.  And when I first learned that I needed the injectable one, I was petrified.

You see, I have always had needlephobia. Through a lifetime of routine tests, blood donations, a pregnancy, and a couple of surgeries, I’d never once watched a needle penetrate my skin.  The thought that I’d have to inject medicine into my own body every week made me, to say the least, very nervous.

My nurse was very patient (I admit, bad pun intended :)), teaching me to fill a syringe using saline and allowing me to practice by injecting an orange a few times.  Eventually, the moment came when I had to prove that I could do it.  On myself.  By myself.  With shaking hands, I filled the syringe with the yellow liquid, carefully tapped out the air bubbles, and tried to remember to breathe.  I then sterilized a small area on my belly, positioned the needle, took a deep breath…….and pulled away.

Nurse Yvonne was wonderful and encouraging, reminding me how well I did with the fruit.  Of course, the orange did not have RA, or any ability to feel the pinch of the needle, so it was just slightly easier.  Panicked, I asked her for a moment alone.  When she left the room, I closed my eyes and dropped into a brief meditation.  What would it mean to have some movement back in my body?  To me, to those I love?  What would I do to make that dream a reality?  I sang a favorite song to myself, “Defying Gravity” from “Wicked” (my go-to inspirational song).  I pictured all I had recently faced and how far I had come.  Within minutes, the tiny needle seemed even smaller.  When I opened my eyes, my hands were steady.  Nurse Yvonne rejoined me, and in one quick motion, I did it, overcoming a fear I had held for almost 37 years.

For me, every Monday’s injection is a reminder of my inner strength.  Unlike my sister, I never aspire to a medical career, but needlephobia is definitely in my past.  Sometimes the smallest things can make us feel the most powerful.  Of course, a little Broadway inspiration never hurts. 🙂

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.