I see a 15 year old girl confused about what her future holds in her newly crippled hands. She certainly doesn’t hold “perfect” health, nor herself straight and tall, free of pain. She feels defeated. She wants to go back to *Before*. Twenty-two years ago this Fall season, I sat on the floor of my gym class wondering why I felt stiff, finding it harder to bend, and hurting where I hadn’t before. I expected the pains of exercise in the beginning of the school term, but this was over halfway through the term. I should feel great! I had always been on active child; Climbing trees, riding bikes, playing basketball. Maybe I just over-exerted myself? Sure, maybe that’s why I’m tired and achy. Maybe that’s why it feels harder to bend my knees, hips, and arms. If only.
Over the course of my 10th grade school year, rheumatoid arthritis moved right on in and broke down my lease on health and life. The constant aching became a nagging reminder that this wasn’t a dream. Inflammation and stiffness became the bestest of friends with each other and promptly bullied my hips, knees, and hands with disease. I was supposed to be living at that glorious age in life where you start forming ideas about the future and all of its possibilities to behold…alas, Adulthood! The question changed from “What do I want to grow up to be?” to “How am I supposed to live like this?”
The structure of High School in and of itself is a special kind of hell for inflammatory chronic pain. You have a number of classes to attend, only so much time to get from locker to class (on the other side of the building, of course), multiple times a day at that. Arriving in class, “Ahh, at last…I can sit”. At least until the end of class… “Oh no, I’m stuck.” Over the course of the hour, your joints cool down and set into place, stiff as can be! Think you’re still going to be the first kid out of the room into the next class like before? Hah, pipe dream. You’ll be lucky to even get out from under this desk timely enough, then to slowly hobble down the hallways (thanks to unforgiving stiffness and the pain), to even arrive in time for class. But when you do, ahh, you can sit…only to find yourself cast in stone again, over and over.
Toward the end of the school year, it became obvious that this wasn’t a passing phase or part of normal growing pains. I couldn’t bend my fingers downward, usually tested by being asked to make a fist. Impossible. Rheumatoid nodules poked up from underneath the skin of my fingers, while my knuckles swelled red. My knees were stiff and swollen. My hips stiffened up and protested whether I rested or moved. My entire body ached::ached::ached. At night, I’d quietly sob my heart out because this is not what I thought 16 should be like. Even the joy of learning to drive finally was marred by the agony of pain in from my feet to my knees to my hips to my wrists down deep into my fingers. Time to switch teen drivers…and I’m stuck in the seat. For finally being in the driver’s seat, I had no control and felt humiliated.
With diagnosis around the corner, came a glimmer of hope for the possibility of control. On one crippled hand, you know what’s wrong, generally. You’ve identified the enemy. You can attempt to map out a plan to conquer and reclaim. But will it work? Or will it demand its own terms? In June of 1995, I was diagnosed with rheumatoid arthritis by a primary care doctor. First plan of attack against this disease was to prescribe Naprosyn to help bring some relief until I could see a specialist at our next military move that following July. A new disease, a new location to call home, a brand new school, and your first medical specialist.
Unfortunately, this invisible disease does not render you invisible on those first days of school. But it does show itself in the waiting room of your new specialist. You’re the youngest patient in the room. You notice that you move just like the older patients. “Are you here with your grandparents?” The Rheumatologist’s nurse calls your name and you stand up. Just as you can’t run and hide from your disease, you can’t hide from wide eyes staring, puzzled by your youth.
Only after seeing my Rheumatologist did I start to realize all that is at stake when living with a chronic inflammatory disease. It’s incurable. It’s different for everyone. Some things work. Some things come with serious side effects. Discussions about the impact of disease activity as I grow older ripped the blinders right off – my disease progression could develop to the point of requiring a wheelchair in my mid-thirties. I was 16. I grew up as a healthy, active child. Who I thought I was before and thought I’d still be suddenly slipped from my crooked fingers. A painful reality sunk deep into my joints with me feeling aged before my time. It seemed impossible to hope for a good future when everything hurt all of the time. Would there still be enough within me to even want to live despite the pain of this damning disease? Am I stubborn enough to hang on?
My name is Kristin. I have utilized gloves for 21 years. I have Rheumatoid Arthritis, Raynaud’s Syndrome, depression/anxiety/health-related PTSD/Panic disorder (continuous treatment), and a mechanical Mitral Valve. I have survived a series of mini-strokes, pulmonary edema, congestive heart failure after nearly dying from Mitral valve infection. I required two open heart surgeries to be put back together again.
I had a rocky start and I am still here.