I was sixty-seven when rheumatoid arthritis entered my life with a vengeance. Fore runners of the disease had probably been creeping in around the edges, unnoticed, for several years.
Thirteen years have passed since I was diagnosed, and the hardest part ... more stressful even than pain and deformity ... has been the inability of friends and loved ones to understand.
RA wears a cloak of invisibility. No one could see my fatigue, pain, cognitive challenges, vision loss, mood changes or balance and coordination problems.
Explanations about why I could no longer take part in daily activities fell on deaf ears. Blank stares often seemed amused that I was making such a big deal out of nothing.
"Arthritis was arthritis," friends scoffed. Everybody had arthritis. My God, Aunt Gertrude had arthritis and lived to be a hundred-and-four, and picked cotton the day before she died! Arthritis was nothing.
Self-preservation finally kicked in. and I began to shield myself from others ... I moved back a safe distance from life-long friendships. I withdrew from expectations I could no longer meet. I turned a cold shoulder to unasked for and rudely invasive health advice.
Rheumatoid arthritis is vastly different from other forms of arthritis. It's an autoimmune disease that causes loss of cartilage, bone weakness, joint deformity and possible damage to internal organs such as lungs, heart, liver and kidneys.
Although the cause of RA remains unknown to researchers, they know it is an abnormal response of the immune system, and while it cannot be cured, early treatment can help minimize or slow damage.
No two RA patients are alike. A drug that works well for one person may not work well at all for another, and all drugs have serious side effects.
The rheumatologist who diagnosed my case put me on a drug called Plaquenil. It worked. I felt better in a very short time. He also gave me Vioxx, which proved to do more harm than good and has since been taken off the market.
Within a year, Methotrexate was prescribed. It's a form of chemotherapy, but RA patients receive a much milder dose than cancer patients. Methotrexate caused thinning hair, nausea, diarrhea and abnormal liver function for me. I was taken off that drug within eight months.
DMARDS were to be my next line of defense. Disease Modifying Anti Rheumatic Drugs. After extensive research, I refused to submit to those biologics. Enbrel, Remicade, Humira ... TV ads make them sound so good, but for anybody the drug is dangerous, and for a woman my age the risks outweigh, by far, any possible benefits.
Today, I still take the Plaquenil that was given to me in the beginning. I believe it helps. Its only dangerous side effect is the possibility of blindness. I have to have my eyes checked each year before my doctor will renew my Plaquenil prescription. So far, so good.
Plaquenil has destroyed all the pigmentation in my skin, leaving me without protection from the sun. So ... when I leave my house during daylight hours I must be covered from head to toe or I burn to a crisp. Very funny looking sometimes, which prompts neighbors to ask what my problem is ... and when I tell them ... yes, you guessed it ... They almost always say, "Oh, Everyone has arthritis. It's nothing!"
I will be eighty-years-old next June. RA has directly or indirectly affected almost every part of my body. Inflamation in my joints causes bleeding which, in turn, causes anemia. How much of my fatigue is caused by anemia and how much by RA? I don't know. It doesn't matter, really. Tired is tired.
My balance is not good. I always use a walker outside. Inside our tiny apartment there's a handy wall or piece of furniture to steady me. I never wear shoes inside. Toes are crippled and doubled over each other, and the joints destroyed. My lungs are damaged. My esophagus is damaged. My speech doesn't always work right. I have mental glitches. My heart is damaged, and ... for good measure ... I have sjogren's disease.
I'm a wreck.
Yet ... if I remain still and quiet when around outsiders, I can still fake it, because I look fine on the surface.
email: MelindaGerner@yahoo.ocm
