Monday, September 10, 2012
Saturday, September 8, 2012
As I looked around the room, my mind went back to a dinner about a year ago. The dinner guests included lupus researcher, a top rheumatologist, and potential donors. During the meal they naturally talked about lupus. When it came to mortality from lupus, I spoke up saying, "It's really hard for those of us with lupus to hear you talk about mortality statistics." And it was. And it is.
One of my fellow teachers has a husband with severe lupus. On Wednesday of this past week, he died from complications of lupus, leaving behind a wife and two young children. Camilo Molina, rest in peace and my light perpetual shine upon you.
Tuesday, September 4, 2012
I went on line today to order a refill for my Cellcept, the wonder drug that suppresses my immune system and allows me to keep my kidneys. I entered all the information and clicked "check out" and then...I got a message that the order could not be processed and that I needed to call customer service. Sigh. I tried again on line and then surrendered and called.
When I calmly and sweetly (yes I really did that) mentioned that the new website would not let me order on line and that perhaps, in the interest of customer service, they might want to check out the website issue the order taker MADE UP a stupid answer. "Well, Ma'am some medication, well you have to call you know. I don't know why, but it happens." I took a deep breath and said, "I have been doing this on line for years. And you are guessing that it all of a sudden changed?" We went on with the transaction. She was slow as molasses and mumbled like she had a mouth full of marbles.
And then...then came the questions from the order taker turned pill police. "Do you ever forget to take your medication? Do you take two pills a day every day?" Any time I need to call this pharmacy, which, by the way is owned by United Health Care, they ask the pill police questions. Once I said, "Excuse me, are you the pill police?" Another time I asked,"And where did you get your medical degree?" Yes, I know it is their job, but I find it intrusive.
Some kind of old anger surfaced today when the mumble mouthed, order taking, answer faking pill police started the questions. I said, "Look here, I give lectures on these medications. I am the program director for the Lupus Foundation of Florida. This is a discussion I will have with my doctor but not with you." To her credit she said, "Ma'am you can just say you don't want to answer the questions." I said, "Fine, I donl't want to answer the questions so please don't ask any more."
What troubles me here is that I thought I was well over the anger of my encounters with all things medical. I trust and respect my rheumy. I am glad labs exist. I give thanks several times a day for my medications. But today, out of the blue, an old batch of anger surfaced. I felt all the sensations of anger and defensiveness in my body.
This afternoon, I sat for meditation. The pill police incident was nowhere in my conscious my thoughts. Tonight I realize that my anger was not the anger of having a chronic illness like lupus. My anger was about the system that controls our care, patronizes us, and treats us as less than human.