I might be able to tell you about Celiac disease in terms of cryptonite (and if you could see Alec's usual personality, and then his reaction to gluten, it really might seem that way to you!), but RA defies any easy explanation.
If only I could tell you about RA that easily! Four years ago, newly diagnosed and barely understanding myself, I had no difficulty telling friends and family what was going on with me, that I wasn't feeling well. I expected to feel better, after all. I had an appointment with a great doctor. There were great new drugs. I asked for prayers. I was afraid, but positive.
But time passed. I did not feel better quickly. Many of my explanations were met with roadblocks. Blank stares. Frustration. The very word "arthritis" is vague, weighed down with centuries of varied use. "Attitude is everything," I glibly proclaimed and closed ranks. But attitude would not dampen the pain in my joints or give me the energy to work or care for my family. Explanation was not a priority. Getting through each day became the goal.
Four years have passed. Up and down. I still have rheumatoid arthritis. Barring one of God's sweet miracles, I will always have it. It is not one of those diseases that goes away. It is not cured. It can go into remission (please, please, Lord?), but in general it is degenerative. It is in a class of diseases called autoimmune. There are others in this class--lupus, type I diabetes, multiple sclerosis, and all kinds of other autoimmune arthritis diseases, but NOT osteoarthritis. Not that one--the one most people have.
In autoimmune disease, the body attacks its own tissue. In RA, the joints and other connective tissues are attacked. But not only the joints. Also eyes, heart, lungs, and moisture producing glands. And that is really only the beginning. Those are the main ones. So if you think RA only makes your joints hurt, then you really have the wrong disease; that's OA. One of the chief symptoms of many autoimmune diseases is fatigue and feeling really unwell. Not just being tired--being ill. Sometimes so tired you can't lift a coffee cup. Most people get really tired sometimes, but ever have trouble lifting your spoonful of cereal in the morning because the spoon is too heavy and you can't close your hand around it? That's an entirely different kind of weariness!
And yet, with RA, you have all of this while looking relatively normal. I say relatively because I can look at myself in the mirror and see now I've aged ten years in four--prednisone will do that for you. But with a smile and hair and makeup, I look well enough to pass for, well, well!
I don't know quite why I'm writing this little post. I read a lot of RA blogs, and it's all been said before--much better many times. But I just needed to restate it for myself. Our family is so blessed. But we live with this subcontext, nearly everyday. What can Mom do? Will she go with us or stay home? How much extra time will we need for that?
The folks over at the the Arthritis Foundation forums call RA a monster. I try to keep it shrunk to size in my mind and life. But first I have to figure out for myself just what it really is.
The Lady in Pred (again)