I don’t know what it is about me, but when I feel like the masses are being slighted, I feel compelled to take up their cause and fight. I call this my inner Norma Rae. Have you seen that movie from the late 70s? The one where Sally Field starts a revolution of the textile industry by standing up holding a big, bold sign that says “UNION” on it?
It was hard. It was unpopular. It causes trouble at home and at work. But it’s the right thing to do, so up she goes. Sign over her head. And that leads to a revolution. Or at least that is how it goes in the movies.
The last few days have been Norma Rae days for me. I am sure I didn’t start a revolution, but I am also sure that the doctor who got me so wound up will at least think of my face and hopefully my words the next time someone shows up swollen, aching, and desperate in the name of Lupus. I have heard of people having amazing relationships with their rheumatologists. The kind of doctors who head up collaborative care among doctors to get patients well and thriving. But hearing about it is where it ends for me. I have a stand out primary care doctor and the kind of dermatologist that you could trust your life to, but I have never had a rheumatologist to write home about. The one I started seeing recently though, simply takes the cake.
I started seeing my new rheumatologist a few months ago when I got a new health insurer. We didn’t totally hit it off, but it wasn’t too bad. She was stand offish and she made a sour face when I showed her the vasculitis on my arm, but I am sensitive about that, so I chalked it up to my thin skin (ha!). When I left her office that first day, she sent me for blood work. Fifteen vials of bloodwork that took four sticks, the last one in my hand (ouch) to get ahold of. I thought I was going to pass out from sheer exhaustion. After that, there was a host of small things (mis-dosed medication, another wasn’t available, I had a reaction to a new generic, and so on) that fell like disease dominos and landed me smack in the middle of a flare–the most painful one I have had to date.
I suffered for a few days before emailing my doctor. She put me on a TON of prednisone and said to keep in touch. I took the ton of prednisone and it was like a beast was unleashed. In addition to a racing heart, I was so dizzy I was losing my balance, I was exhausted but couldn’t sleep. AND I WAS A MEANIE. At the prompting of my poor, suffering boyfriend, I went back into see the doctor face to face.
This is where the UNION sign comes in.You see, I had already had low expectations for this doctor caring for me. But when she met my sick, sad self with a pile of pain pills, and “Well, that’s Lupus. Eventually the flare will be over and you’ll feel fine.” I kind of lost it. I asked her to consider that people are more than the sum of their symptoms and test results. I told her we weren’t working out (like we were dating or something), and I did all of this while hysterically crying. In my experience doctors aren’t huge fans of tears. They are a more tightly laced lot. My rheumatologist looked horrified, but all I could think to myself was, finally I am getting through to her. I eventually pulled myself together enough to finish the visit and head down for more blood work. I wasn’t done though because all of that went badly too.
I just finished my follow up email to her (this is how she prefers to communicate) and it reads like a ranty break up letter. Whether or not she even reads the damn thing, I had to say it all. I had to say it for every person who ever has to sit in a phlebotomy lab and get told, “You are a slow bleeder. I am going to have to stick you again.” I had to say it for every person who has had to sit down to dry their hair because showering took just about all of their energy. I wanted to say it for every person who didn’t have the strength to say it for themselves. I had to say it for everyone who has Lupus.
God save the world when my hands don’t hurt too much to type.
PS: From the “well ain’t that a kick in the head” files, I just found this article from a few years ago: Real ‘Norma Rae’ dies of cancer after insurer delayed treatment