I can remember waking up in the back spare room and not being able to close my finger. It was the strangest feeling and sensation. I didn’t have full control of part of my body. No matter how hard I tried, my finger would stop and not go any further despite my will for muscle control. The days passed and other fingers started to show the symptoms on and off over a few days, weeks, and months, isolating to a body part I could no longer move. I had just gone through a very hard time and stressful situation losing loved ones, having to navigate again and grasp for some normalcy. Little did I know this driven existence would continue for years. I thought it strange that admist the uncertainty of life, I couldn’t fathom being stopped without my will’s consent. My boyfriend (at the time, now my husband) showed similar symptoms, but not as extreme, leading me to question if there was an external source causing this (mold, living close to a freeway, stress, the list of studies always ran rampant through my mind). I thought about the reality, that my recently deceased grandmother who we had been living with had an internal body altering diagnosis herself. She had had it long before I was born. Her body was worn by its self-attacks. But her spirit strong through it all.
I finally had to face the facts. The symptoms were there, even though no one could see the signs.
I remember coming in for some blood work and I didn’t know what to expect. But it soon became clear, the pain and immobility that I was experiencing wasn’t at random it was a collection of realities coming together to create one modern labeled truth. What complacency there was, when I had an ambiguous uncertain nature, sporadically hitting my body.
You have the Rheumatoid Factor, blah blah blah, white cells this…. elevated that. You have Rheumatoid Arthritis.
What!? The painful… debilitating joint body morphing arthritis my grandmother had? How could I have it now? Never before? What external factors have expressed this disease now? Was it the move? The death in the family? Living with a boyfriend? Mourning? School stress? The house? The food I eat? The depression? All these raced into my mind at some point… the most prevalent. I am 19 with R.A.
It’s truly amazing how much we take for granted. How we don’t appreciate health in its prime (because it is our normalcy). It’s not until a cut or broken bone that we focus our energy on a centralized area of pain. OH how I wish I would have appreciated the ability to feel nothing, the sensory without pain perception. It’s funny how looking back now, how an almost instantaneous ripple effect snow balled and manifested itself into action. Joints I never paid any attention to… ached. The only way I could describe it to others… feeling like the tin man in the Wizard of Oz. Not being able to move, and when I did, certain parts would hurt. In the mornings, I would be a teenage adult feeling like an achy 70-year old waking up. It hurt, and yes, it deeply affected me.
The doctor told me he was going to start me off with 4 pills (horse big old pills), than I would move to 6 and then 8. I hated pills and rarely took them. I could not cope, tragedy hit, and my soul checked out. Personal problems arose while taking those pills. I could not handle it. I stopped taking anything for about 2 years. It was a decision to act as if none of it was real. I avoided doctors too and dealt with the pain. Alternative this, mental that, gluten free, healthy bee, I tried! Amongst the stagnancy I researched, and I learned. Why would your own body want to attack itself? What joint problems effect your lungs? Your 16-year old athletic vibrant being would not believe the dramatic change even if you shoved it in her face. That was then, but I was here. It only took rambling, staggering days, and tender time to bring in the other diagnoses.
Well, your thyroid isn’t functioning right and it’s kind of a big deal (can’t remember anything and feeling lethargic), and…. your blood it’s doing this thing to make your hands and feet purple and cold, basically bad circulation (say this in any doctor voice you’d like that annoys you).
Yes, I was aware of my own coldness. I’ve lived with that my whole life, that’s not a disease or a condition! It is who I am. Yes, these existences came with their own potent pills and a host of brochures. The knowledge made me sick to my knees and with my condition that means literally. It’s interesting how I didn’t think my health was that significant in my life until I allowed it to consume my thoughts, probably a bitter blessing considering it kept my mind off other things.
The R.A. eventually crept back up with the flares that sneakily progressed in gradual anger. It wasn’t until a camping trip in a camper on a beach that it hit full force. The cold of the ocean… which used to bring me joy, now seeped into my very being stinging with its pain. I uncontrollably cried in a car on the side (the questions of why spewed out like an uncontrollable broken sprinkler) the deep realization came forward that I can’t ignore this autoimmune disease. I allowed my loved ones and family friend, comfort me and bring warmth, as I lay in agony that drifted into the night. I finally decided it was time. Yes, time to go to the grueling doctors who I did not trust to tell me what I should do. Each with their own interpretation and preventative poison to stop the strange growing monster inside, to stop my body from attacking itself. My boyfriend/fiance by my side…
Well, you got a couple of options. I encourage the most extreme. This one is a biological, this one will make you… that … this one… you need to monitor it… it will take a cut or an infection and make is into something serious. These will cause babies to come out and abort themselves and/or cause serious damage to the fetus. You need to be on two birth controls or it can cause serious harm if you plan to get pregnant, so everything must be heavily planned… ohh yeah and it is used for stomach cancer ( I was back at the doctor’s office different room, same scary concept).
The decision was made after a flood of uncontrollable emotions, as the doctor tried to have some humane response to my pity and sorrow. Some sympathy under the disconnected present (probably a result from patient to patient trial).
Okay let’s do this. I’m going to have to be extra careful and truly aware. Every decision I make has an impact on my future. What I expected was not going to be true. But I was moving forward as a R.A. patient controlling her disease, a hesitant wife scared of the future, an oftentimes bothersome lover because of my condition. You know what, I can do this… it will be a great step forward to step away from the pain.
THE GOOD AND TRANSFORMATION
It’s been a few years since the diagnosis and I have led what some would call a “normal life.” I take dozens of pills a month that work at the dysfunction in my body, and I wear wrist guards at night (a great idea from my father, thank goodness). You know what, I was wrong about how my future would look. I thought it would be grim with unnecessary prescriptions. I understand now the value of life with limited pain, however, there are occasional reminders of what “I have.” Especially, after stressful (talk about actually feeling what stress is) and cold and rainy days. Ironically, those are one of my favorite days. Gloomy days with hope. There has always been something beautiful about a gray sky.
My diagnosis, scary at first, put me back in control because I could identify, hey something is happening in my body! I have come to admire and appreciate the young and old alike who have conquered R.A. and have learned to live with it. At first, I had the inevitable woe-is-me syndrome, and yes, it kind of sucks not being able to wear boots for long periods of time without feeling suffocated because one foot has more inflammation than the other. But other people have medical issues and mental health problems (I’ll get into that another time). Sometimes life is a little hard and sometimes you are going to get beat up (even if it is your own body doing it). But now I understand the catalyst once thought to be a weakening factor… has actually made me stronger.
“when I am weak, then I am strong.”
2 Corinthians 12:10
The several doctor appointments remind me of its presence, from blood work ( I still cringe before even seeing the needle), to X-rays, and annual eye checks (medicine and the disease can make you blind). The monstrosity of it and the branches of what it does gets to me every once in a while. But today I have managed and found ways to treat and respect my body in ways I hadn’t thought to care about before. A simple stretch and yoga when you have R.A. feels better than you can imagine, and heat has become my well-liked best friend. Although you can’t see my R.A. because I have taken measures to help prevent it from progressing (unless you have a trained eye), it is still there.
The monster and I have learned to live together and I have tamed it, and in the process I have also grown to enjoy its company.