When I was 19, I was felled by Rheumatoid Arthritis (RA). First, they thought it was Lupus, then Connective Tissue disorder. Then they told me to change from my Criminal Justice major to a more sedentary one, because if it was Lupus, I would probably be in a wheelchair by the time I graduated from college, at the University of Dayton.
I switched to business management. Finally, two years later, when I graduated and came home, they definitively said, R.A.; the most ironic thing is that I left the banking and business world, and now I am well into a career, in Criminal Justice.
Rheumatoid Arthritis, or RA, is a misfiring in communication within the body. Messages go to the brain that the lubrication in joints, called the synovial fluid, is being attacked, when it is not, and in response, the body attacks back, causing varying levels and intervals of inflammation, swelling, stiffness and most of all, pain.
To date, the alterations or deformities you see in gnarled hands, crooked legs and lack of ability to move are permanent. The side effects of the treatment, also require treatment.
A new wave of medicines, call Biologics (like Remicade, Orencia, Enbrel, and what I take, Rituxin), are altering the landscape of treatment. This class of drugs can actually REVERSE the damage RA and other similar diseases cause within the body. Four months in, I have seen no reversal yet, but I remain ever hopeful.
Tuesday I completed my second round of Rituxan, taken in an 8-hour transfusion, then 2 weeks later, another six-hour transfusion. Results are said to last 4-6 months. My first round benefits were significant pain reduction, which lasted just under 4 months. To date, I have not felt any pain reduction with the second round. Knees, ankles, wrists and back burn, incessantly.
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Lightheadedness and nausea visit at times and the very nature of RA is that it is up and down. I don’t know how tomorrow will be and what level of pain will impact my day and my activities. Planning becomes very fluid. Flexibility in mind and body are pain preventers too.
Obviously, I have to work every day, to pay the bills, and not get lost in the easy (though very temporary and very dangerous) bottle, whether it be alcohol or pain pills. Patience becomes perfected to prevent drowning in the never ending pulsing of my joints. When the joints are in a highly agitated state, like they are now, head down, chin up is the road less traveled, but I have found, the most successful road to take, till things cool.
I walk most every day, use the hot tub as often as I can fit in, and don’t sleep. If I don’t walk today, I will not be able to walk tomorrow. Sleeplessness is often a badge of RA – despite the nightly Ambien, waking frequently to shift from one side to the other to relieve the burning can be adapted to, I know. Yet still …
13 years ago, I broke my back. Its treatment is, even more, hit or miss than the RA treatment. Surgery is not an option. I go for a series of shots down the spine every few months, depending on how I’m doing. Side effects are negligible. The efficacy of the injections means I can move side to side, but if I twist, I shout. I work it on out.
The hardest part of the pain is not the pain today or this week. It is the pain over the long term, years of fighting takes more energy than is freely given, and doesn’t leave as much to live life, beyond it. Squeezing turnips.
So whether a person is old and slow, or young and slower, I seek to write to light: the candle to light your way out of the darkness. It lies not in the years, but in the mileage. I’ve been down in this hole before, and I know the way out.
Thank you for allowing me to share my story with you; please share your story, with me.
“Follow me where I go, what I do and who I know;