And into the black...
Hi. My name is Amy, and I am - well, I'm lots of things. And I'm not very fond of labels. Let me just say that I'm 42 years old. I have one failed marriage under my belt, a couple of bad relationships, and one really good one, which is ongoing. I like hiking, reading, writing, and playing the bongos. Until last year, I was in reasonably good health. Then, from out of nowhere, came near-constant pain, stiffness, and exhaustion. Lots of other things were going on at the same time - grief for my father, who was recently deceased, severe work-related stress, and kidney stones. But after the work-stress eased a little and the grief mellowed just a bit, after the kidney stones had passed, I still didn't feel good. My back was agony, my hips screamed, and my knees crunched with each step. My hands, wrists, elbows, and shoulders ached constantly. And I was tired - oh so tired - I could fall asleep within minutes, no matter where I was or what I was doing. It went on this way for a month, until a persistent, flickering little light bulb came on in my brain and wouldn't turn off. It blinked the same message over and over: rheumatoid arthritis.
Now, you may ask, why would an otherwise healthy person automatically assume rheumatoid arthritis? Given the symptoms, it seemed to be a reasonable assumption. My older sister was diagnosed with the disease about ten years ago, and there is a genetic component, so the likelihood of my developing it was higher than normal. I had seen my doctor four times that month already, but I went back and asked for a blood test. Within six days, I had the answer. It wasn't one I liked, either. All the tests were positive for RA.
So - if you don't know anything about rheumatoid arthritis, here are some facts to get you going: women are three times more likely to develop RA than men. Less than six percent of the population has or will develop RA. It occurs more often in middle age, but can be diagnosed at any time. Symptoms often go away during pregnancy, but return with a vengeance after childbirth. New information suggests that breast-feeding lowers your risk, but it was no magic bullet for me. I nursed both my kids and I still drew the short straw. RA affects joints and a whole lot more - skin, internal organs, the eyes, the blood, even the bones are at risk. Pain and fatigue are the two most commonly mentioned symptoms. When I write the words it doesn't seem that bad. But the pain can be excruciating, and the fatigue is sheer exhaustion. Combined, the two make the simplest task seem daunting.
I went to the grocery store today, intending to pick up the ingredients for chili. Two cans of tomatoes, two cans of beans, chili-mix, tortilla chips, a pound of lean ground beef, and some shredded cheese went into the cart. By the time I had loaded all these things, my right elbow, wrist, and hand were throbbing. So I used my left hand to scan the items at the self-checkout station. My grip isn't the greatest and I dropped two cans; both hit my right big toe. I have a lovely purple crescent-shaped bruise there now, right below the nail. I loaded the groceries in the cart, pushed left-handed out to my Jeep, and loaded the bags in the car. By that time, my left hand and wrist were also throbbing. So I drove home in pain, unloaded and put away the groceries, and sat down. I was exhausted. The trip took an hour and it pretty much ruined me for the rest of the day.
Now, let me say that the purpose of this blog isn't to complain about RA or to feel sorry for myself, though you will probably see some of both here. The real reason for this blog is to explore this diagnosis, and to honestly delve into what it is like to suffer chronic pain and exhaustion, the distinct possibility of a foreshortened future, the chance of being disabled within the next year, and the concurrent emotional issues. I recognize that I have been in denial about entire process, from diagnosis to prognosis and everything in between. Besides a vague sense of depression and a less-vague anger and frustration with every routine task I can no longer complete without help, I really haven't felt anything much. I know from experience how unhealthy this kind of detachment and suppression is, so here I am, laying it bare, stripping down the angst and the anger and the sadness to whatever is at the core. This thing came at me out of the blue, and it wants to drag me into the black - but I won't go without a fight.