11:13 p.m. - 2008-09-11
On Second Thought...
Erik made me go to the doctor this morning. I'd been sick with some bug for over a week, but kept saying, "It's just a cold or something. And they just go away on their own." Finally, he was just like, "I'm making the appointment. You're getting worse. We're not letting things slide anymore."
And he was riiiigghhhtt... Grrrr. Basically, I am hacking my brains out, my throat is killing me, my voice is gone, and I'm all stuffed up. My doctor, whom I love, put me on some meds to clear me out before I developed fucking pnemonia. I'm glad for that, but a better reason for the appointment presented itself when I was updating her on my rheumatoid arthritis status (because that is handled by another doctor.)
I said, "The methotrexate has only worked a little. He wants me to start Remicaid infusions soon."
Sharp intake of breath from her, before she said softly, "That scares me so much."
In my head, I'm like, "FUUUUCK!" I totally trust this lady. So just as I was making peace with my decision, I was getting red lights all over the place in an instant.
Dr. Grace (aptly named!) continued, putting her hands on my knees as I sat on the table indian-style. (Not in a creepy way. I usually hate anyone touching me. But Dr. Grace has a total maternal/favorite aunt quality that makes me feel really reassured and cared for.) "My sisters and I all have that pain. For years. But we all tested negative for rheumatoid factor."
"Me too," I said, "I'm negative." There is a blood test for rheumatoid arthritis, but you can test positive and not have R.A. Conversely, you can test negative, and still be diagnosed with it. Which begs the question, why do the fucking blood test at all?!
"The only thing that fits is the rheumatoid," she said. "And my sister, she is the star of our family. A nurse. Never missed a day of exercise. And all of a sudden, she was in agony and couldn't climb one stair. Her rheumatologist put her on methotrexate, and she was calling me, saying, 'Gracie? Is this ok, do you think?' And I was warning her about the immune system side effects. But she went on it, because she couldn't function at all. It didn't help, so her doctor started her on the infusions." Her voice got softer, but she maintained steady eye contact with me. "Awhile later, she became so sick from an infection, I was sure I was going to lose my sister."
"Oh my God," I said, immediately crossing the it off my mental to-do-list.
"She was in the hospital for awhile, and pulled through. But she is off all that medicine. Nothing can help her, because all the meds for R.A. will do the same thing, and because of her job, she is around germs all the time. The risk is too great."
"So she just--"
"--Lives with horrible pain." She finished sadly. "And I'm afraid of it too, because I get it, although not as bad. I couldn't take any of those meds either because I am around sickness all day. At the same time, I know that it could be eating and destroying my joints."
"There's no winning. No good choice," I said, nodding. "I thought all summer about what to do."
"Listen, Keri. I have some patients who have been on Remicaid and come bouncing in here saying they are doing fabulous. The best advice I can give you is to avoid work that is notorious for germs-- medicine or teaching. And you might have to be anti-social."
Done! I responded in my head.
"If there is a party, and somebody's sick, you have to pass. And if you are sick with something, you have to skip an infusion that month. Did you take methotrexate this week when you knew you were sick?"
"Yeah..." I admitted.
"Next time, you should delay it until you are well. Call your rheumatologist about it, but you should only do those things when you are well. I would say, try it. And if you get sick at all, you get right in here. I say it to all my patients who are on immune-suppressants, steroids, and chemotherapy. Don't wait anymore. If the staff tells you I don't have an available appointment, you tell them what I told you, and you might have to wait in the waiting room awhile, but I will see you that day."
"Ok," I managed to croak out, slowly feeling better. It felt so good to have a real conversation with the dreaded white-coater. Even one as nice as Dr. Grace. She had the professional knowledge to advise me, but at the same time, she knew from personal experience what the damage and risks of the medicine can do to a person.
"I would say, try it. And if it doesn't work, you get right off."
Which is exactly what conclusion Erik and I came to this past weekend. Give it three months, and if the fever and pain remain, I'm getting the fuck off it. So even though my mind is still made up on the same choice, I felt much better about it, having heard from someone (a doctor!) who was dead-on honest and really, truly seemed to care. She's really one in a million.
