RA is Like Banana Cream Pie . . . In Your Face

You know those movies where a character is feeling really full of themselves and on top of the world, and then someone plants a pie right in their face? Yeah, that’s how I’m feeling about rheumatoid arthritis right about now.

A couple of months ago my rheumatologist added Plaquenil to my regimen of Orencia and Arava. Recommending the medication, he said he hoped it might be enough to push me towards the ultimate goal of remission. I was stunned to hear him use the word “remission,” and I felt nervous about daring to dream that I might attain it. Having RA has involved a lot of disappointments over the years, from having to cancel being a camp counselor the summer before my diagnosis to having to stay in a hotel room while my husband took the kids to the zoo a few weeks ago. In the 15 years between, I have been working to accept this condition. One might think that after 15 years I should have fully accepted this reality, but it’s more complicated than that, as there is no single reality of living with RA.

Surprise! It's RA symptoms

This autoimmune disease fluctuates like a leaf floating on a stream; just as it seems to be gliding calmly on the water, the current swirls over rocks and sends the leaf reeling in circles and spins. In the past 15 years I have hiked up mountains and I have had trouble climbing a flight of stairs. I have birthed a baby without painkillers and I have needed pain relief drugs to get through a completely uneventful night. I have backpacked through Europe and I have had trouble carrying my purse. My RA reality can look different from month to month, from week to week, from day to day, and even from hour to hour. I have had months on end where my symptoms were so mild they were an afterthought, and I have had months where I was barely able to leave the house. When you have a disease that always keeps you guessing, it’s hard to assimilate the disease into daily reality, as that reality is always shifting. Knowing that pain might always be lurking around the corner, it doesn’t always feel safe to hope.

Yet, after several weeks on Plaquenil, my swelling decreased more than it has in years. My wedding ring was loose on my finger. My pain was at very manageable levels. So I began to hope. I entertained the dream that maybe remission was possible for me. Perhaps I just might be one of those lucky people who hits the right mix of meds and is relatively symptom free. I felt energetic, mobile, and optimistic.

And then RA threw a pie in my face.

Only, instead of a face full of whip cream, I had a body full of pain. It was painful to walk, painful to drive, painful to hold a cup of coffee, painful to sit, painful to hold my cell phone in my hand. My wedding ring was once again snug on my finger, and I realized that rather than being on the cusp of remission, I was worse off than I’ve been in months.

Recently my 98-year old grandmother had a stroke, and now her right hand and foot move on their own accord. She will grasp things in her fist without intending to, or her foot will move off her wheelchair footrest without her meaning to move it. Right now, with my body so affected by this flare, my body reminds me of those stroke symptoms; I feel like I have no power over what my body is doing. I cannot will this pain and inflammation away. My immune system has its own mission, and try as I might, I can’t seem to thwart it. I can’t make it behave, and be the good little immune system it should be, fighting off germs and leaving my joints alone.

RA and spontaneity

I know that having a positive attitude is incredibly important in managing a chronic condition. Laughter has been shown to have benefits for our health. I want to embrace the belief that I can be healthy, that my body can be whole, that I can be well. Yet, RA is so sneaky and cunning, part of me keeps waiting for the other shoe to drop, as so far it always has. So here I stand, with the frenetic feeling of prednisone speeding through my system, trying to regain that glorious vision of remission while wiping the whipped cream out of my eyes.

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