I want my life back. I want to be like I was before. I want to be cured.
That's what all chronics want. We never can quite give up the hope that somewhere out there is somebody with a cure. Because cures in our culture tend to come from doctors, we spend too much time and money looking for the right one.
I've done that. A lot. It didn't work.
These days I stick with my internist. He's the one who first diagnosed me with lupus. Dr. B has a lousy bedside manner, dismisses almost all my concerns as the products of an overly anxious imagination and at times treats me like an idiot child. On the upside, he has worked with me to find pain medication that will let me live, and he has told me he will increase my narcotic dose if I need.
He's clearly a superior physician.
Most people with autoimmune diseases are treated by rheumatologists. There is only one in my little town. When Dr. B gave me the referral to see the rheumatologist, who I will refer to as Dr. Rheumy, he did so with some trepidation.
"He's going to tell you that you don't have lupus," Dr. B said. So why was he sending me to this doctor who would undo the diagnosis he and I had so happily agreed upon? Well, that's how it's done.
So off I went to the good Dr. Rheumy, who indeed told me I didn't have lupus and wasn't really ill. He didn't believe the positive result of a test for Sjogren's Syndrome and had it redone twice. When it continued to come back positive, he informed me that it was really a mild disease and that I wasn't really sick and didn't really hurt.
OK that didn't work, but the good Dr. B started me on appropriate treatment for autoimmune disease and for discomfort. As the discomfort turned more and more into howling nasty pain, I looked for another doctor. Somebody with more answers. Somebody with a cure.
Let's just say I kissed a lot of frogs but all I got out of it was a good set of warts and about $4,000 in medical bills that my insurance company didn't think it should have to help pay.
Probably the lowest I sank was when I went to a highly recommended doctor who never looked at my medical history, tossed the questionnaire I had filled out and ignored all my questions. I was, he announced, suffering 'Female Pain Syndrome'. This was caused by childhood sexual abuse and ongoing abuse by my husband. Oh yeah, and by me being female.
I told him I had not been sexually abused as as child. He shook his head and talked briefly about denial and then started badgering me about my husband: 'Does he hit you?? Is he verbally and emotionally abusive???/
This time he didn't even pause to let me say that my husband is the kindest, gentlest man in the world and wouldn't abuse me or anybody else. Instead, he launched into the treatment: no pain medication of any kind. Instead, I would go to psychological counseling twice a week and take big doses of antidepressants to deal with the constant pain. I would learn to endure the pain and go on with my life despite it.
Because my clothes were in another room and I was wearing a facial tissue I had to wait for the madman with the stethoscope to leave before I could escape to my car.
I've run into other women who have had the same treatment from him. Yikes. Do you think anybody goes along with his crazy treatment plan?
There have been other doctors. You'll probably hear snippets of those visits. But for now I'm sticking with Dr. B. He may be insulting and rude, but he also writes my monthly prescription for morphine. He helped me when I was trying to qualify for Social Security Disability. And he's almost always available within the day or two after I call for a visit.
Maybe the most important thing Dr. B does is that he tells me I'm not going to be cured. He reminds me that my illness is progressive and that it is progressing. He tells me that nerve pain is hard to treat and that the options are limited. He keeps me anchored to hard reality.
While I don't like having my hopes popped like so many pretty balloons, I know that chasing cures won't do me any good. Hope is vital. Reality can't be ignored. When medical science comes up with a cure, Dr. B will write me a prescription.
Besides, I figure every visit with Dr. B from now on will give me at least one good blog entry. You just can't ask for more than that from a doctor.