One of the lovely gifts of RA is the accompaniment of chronic pain. People with RA suffer from stiffness, swollen joints, and extreme fatigue, too, but the pain is really something special. Sometimes - much of the time for me, thankfully - it is like background noise, that muzak you hear in K-Mart but don't really listen to unless the same song plays over and over, and it's a cover of something by Michael Bolton that you really hate. Most of the time, it's a down-beat version of some easy-listening song from the late seventies that is droning and annoying but possible to ignore.

Yesterday, I had one of those screaming Michael Bolton days. Words aren't enough to describe the kind of pain I had yesterday, but I'm going to take a stab at it, because hey, why not? And also because a huge part of being honest about life and about my disease is not sugarcoating anything, especially to myself.

It started with a low-grade fever, as it so often does. Around 10 am, my vocal-cords started to rasp and my ears began to burn. Hello inflammation - we meet again. By 11, the fever had abated, and that's when the pain showed up. At first it was a cold knot about a hand's breadth below the crest of my neck. From there, it sent bitter tendrils out into my shoulders and down my arms. First my bones and then my muscles began to throb. My right elbow swelled, then my right wrist, and finally, the fingers of my right hand joined the party by becoming five pink sausages. By that time I was in staff meeting. When I got up to leave at twelve, pain shot down from between my shoulder blades to lodge in my lower back, my hips, my right knee, both ankles, and all ten toes. In my upper body the aches were throbbing, dull, and bitter cold. In my lower body, the joints blazed with deep, crawling fire.

I've given birth twice. The first time, I had an epidural which stopped working about an hour before my daughter came into this world, but I managed okay despite the pain. The second time, I had four-degree tears and my pelvic bone cracked apart like a drawbridge swinging open. I had stitches on all those levels of muscular and skin injuries, which took 45 minutes to complete after I finally birthed my nine-pound daughter following three and a half hours of hard labor. All of this happened without even a smidgen of anesthetic, pain-relief, or even a numbing agent for the stitches. That kind of pain is mind-blowing, but it is finite. Yesterday's pain was not as intense, but it seemed infinite; an appalling desert baked with unrelenting heat and yet frozen with blasting cold.

The afternoon crawled by. Around 4 pm, the pain started to recede. In it's wake, exhaustion came on like a downpour - the need for sleep flooded my body and left my eyes dry and aching. The rest of the afternoon and evening were a series of ebb tides as the pain worked its way out of my body and weariness replaced it. By the time I finished my day, I was dragging. Bed happened at 8:30. Sleep didn't follow until around 10 pm. I dreamed of being on the rack, with my body stretched in all directions and a vise clamped around my right elbow, wrist, and hand. When I woke up this morning, I was stiff and tired, but the screaming pain was mostly gone. My right arm still aches, and the cold knot that started it all is still there.

A friend asked me yesterday what I take for pain, and that answer is easy. Nothing. I take Relafen for the inflammation, and I take Plaquenil for the RA. I take Tylenol for pain, but not often, because it doesn't help. My doctor has declined to prescribe anything for pain relief thus far. I go back to see him on Wednesday of next week, and I plan to talk to him about pain. The current levels of addiction to prescription pain-killers in this country are staggering, but even more outrageous is the amount of people who are struggling silently with horrid, never-ending pain. People in chronic pain are twice as likely to commit suicide as people without pain. Some of the people I know who suffer from chronic pain talk very frankly about wishing they wouldn't wake up in the morning, and about what a relief it would be just to die. Doctors seem to have a predisposition to ignore pain in their patients, or to assume that pain can just be dealt with. Well, short-term pain can be dealt with easily enough. But long-term, lasting pain wears you down - even the background kind - and knowing that at any time you can be blasted with a nuclear warhead of agony that might last for hours or even days does something deadly to you. It kills your hope. It kills your desire to continue, to want life. The pain itself is ridiculously hard to fight. The depression and despair it generates are overwhelming.

So - how do I cope? Not well, I admit. In dealing with Post Traumatic Stress Disorder I developed some coping mechanisms that include mindful breathing and meditation. Both of those are helpful now. I write - here, on this blog, and in my journal. Being honest about pain and despair helps to relieve both, to some degree. Denial has been and continues to be a problem, but I'm working on it. Despite the depression and the general gloom of chronic pain and illness, life is still good. Hard, but good. Has it ever been any other way?


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