My New Routine

Ever since my rheumatoid arthritis diagnosis, I have been learning a lot about some new limitations. I don't always know what my energy level will be like from day to day so I've become very reluctant to make plans. Cute shoes very rarely equal comfortable shoes. My favorite shirts quickly end up in the back of the closet - or a donation box - if they have too many buttons. Cooking has become more of a chore and less of a hobby. Driving any kind of distance requires slippers and some NSAIDs. I miss a lot of work due to my chosen treatment path and the resulting suppressed immune system. I have slowed down. I carefully select the activities in which I participate. I have to shrug it off when people ask me about it and then are quick to tell me that they have the same thing in their knees or their grandmother also had it in her hands.

I sit in the hospital room's reclining chair every eight weeks and contemplate this new me while the medicine slowly (So. Very. Slowly.) drips into my one remaining good vein. I wait patiently for my blood panels to come back and show that my liver and kidneys are still hanging in there and so I can continue this course of treatment. Inevitably, someone will be in the infusion room waiting for their dose to finish.

Most recently a woman was already in the room, halfway through her treatment. She was reading a book as many of us often do to while away the hours of drip, drip, drip. But then I noticed her hands and the tell tale swan neck deformity of her fingers. My mind flashed back to my freshman year of high school, biology class. My teacher, living with the same affliction, would have to place the chalk, pen, scalpel, what-have-you in his right hand with his left because he was unable to grasp them. I remember being fascinated by his adaptive habits and curious about the illness that predicated them. I never once thought to ask. Well, I know now. I often wonder things about that teacher that I also discuss with those people in my infusion room. When were you diagnosed? How quickly has it progressed? Sero-negative or sero-positive? Do you have autoimmune disorders as well? How much has your life changed and in what ways?

I am my harshest critic, especially when I find yet another thing that is either more difficult to do now or just plain impossible. Adopting a new routine has been challenging and still is on most days. Invisible illnesses have started to garner much attention. People that often look healthy are not...but they have not let their disease stop them from living their lives. The more I learn about my limitations though, the more I've become much more sympathetic to others. And that has been the bright side for me.

It All Started To Come Together

The pneumonia, the ever-present joint pain, the crushing fatigue....it all hounded me for the better part of 2013. With the exception of the pneumonia, none of it was very alarming. I kept putting off the return to running for little aches and pains, convincing myself that they were nothing. The weekend before Christmas I had been wrapping gifts and preparing for a large dinner at my house. I was not surprised when my lower back started spasming...I didn't think much of it and popped 4 ibuprofen. My friend offered her TENS unit with some simple instructions on how to use it. I spent the next few hours wrapping gifts and being softly zapped every few seconds.

I woke up the next morning unable to pick up my arms or move my legs. It felt as if every nerve ending was on fire. I was terrified. My husband helped me out of bed and helped me get dressed. I spent some time on my exercise ball, trying to stretch out my back in hopes that it was what was causing all of the pain. I took some Tramadol that I had left over from my shoulder surgery and waited for it to take effect. I can't explain the shock and horror of becoming an invalid nearly overnight when just 12 months previously I was finishing a marathon in just barely over 4 hours! I could not comprehend how, once again, my body was turning against me. The Tramadol helped and I was able to continue preparing for the large dinner party that night.

Eventually the sharp pain reduced to a much tolerable level, but it was replaced with an achy stiffness in my hands and feet. Getting out of bed required patience because I was unable to put any weight on my feet without "warming them up". My waking routine because a series of flexing and rotating of my feet and hands until I felt comfortable enough to use them. I made an appointment with my primary care physician, sure that she would send me back to my physical therapist for some back work. I vowed to never run a marathon again.

She instead gave me large doses of steroids that offered such great relief that I was able to forgive the awful side effects: massive weight gain, acne, mood swings, brain fog... After a myriad of tests, ruling out MS and a host of other scary diseases that I had never heard of, I was sent to a rheumatologist. I knew that my Grave's Disease diagnosis so many years ago made it more likely that I would be diagnosed with yet another autoimmune disease. Knowing this, I was still not prepared for the new label I was given: Rheumatoid Arthritis.

My thoughts were immediately consumed by images of my freshman year Biology teacher whose hands were so deformed (by what I now know was RA) that he had to wedge a piece of chalk with one hand into the other hand so that he could write on the board. He was unable to demonstrate a proper dissection of the earth worm because he lost most of his fine motor skills. His hands were so twisted and gnarled that I could hardly stop staring at them all those years ago.  Tears sprang into my eyes. I looked from my hands to my new doctor's eyes and back to my hands. He finally paused and said "You're not hearing me, are you?" I shook my head and he decided to send me down to the lab to get my baseline x-rays. I had to have x-rays of my hands and feet in various positions as well as my lungs.

My head was spinning. I was in shock.