Had to go to the rheumatologist yesterday, which I always sort of dread. I have an appointment every 2 months so she can keep tabs on me. There are many things I dread about it, I suppose. The dread doesn’t set in until I get there. I walk in and think “oh yeah, that’s why I’m here.” A reminder that I have this stupid disease, as if I need one. A fear that something else will crop up during blood work or the exam. I vacillate between wanting to tell her about new symptoms and wanting to keep my mouth shut for fear of more prodding or meds. (I usually tell her. I’m a nerdy patient that way.)
The night before every appointment, I update my med list, and type out any and all questions that I have or things I want to say.
I never see anyone my age at the office in the waiting room, a fact I’ve become accustomed to over the years. Everyone is 20-30 years older. I know there are patients my age. There have to be. I just never see them. Is there some hipster rheumatologist they’re all going to where everyone reads DWELL and listens to alternative music?
I was dragging ass when I went in yesterday and told her as much. The fatigue has been grueling lately. (I have been relying on caffeine to fuel me through afternoons.) My hips ache all of the time. I feel as though I am slogging waist high through mud. My mind is foggy and words don’t come easily. That proves to be really frustrating when the word is something like “couch".
She took X-rays and noted that my hips look ok, blood tests will tell more. Turns out I have bone spurs, which aren’t a big deal really and shouldn’t be causing the hip pain, unless they start aggravating a nerve. (If she detects more inflammation, or lupus activity, she’ll have to up my immunosuppressant, which makes me more nauseous than I already am, and more susceptible to infection.)
Because of the pain, she doesn’t want me doing anything with too much impact. “No running,” she said. I have mentioned to her in the past that I have been flirting with running. I envy these people who “lose themselves while running” and find it so “zen”, as well as being a great workout. She’s grimaced in the past and told me to go easy but yesterday she said “absolutely not.” She wants me on the elliptical, as well as keeping up with yoga.
Why was I strangely liberated when she said “no running?” Actually, I know the answer. It’s because I didn’t want to run in the first place. I want the results but I fear the pain it may cause. I know many runners though and I wanted to be like them. To enjoy it like them. But I can’t. Doctors orders! No love lost.
On the exam table she examines all of my joints, moving them, bending them, quiet as she moves through this process.
I ask the question I usually ask, ever the good patient, “Is there anything more I can do to move towards a remission?”
It’s been 7 years and no remission. I may never be in remission and I know that.
“Ultimately, there isn’t anything more you can be doing. You can’t change your DNA” she says.
This statement echoes in my head and irritates me.
She tells me of the clinical trials for an exciting new drug that’s testing really really well. I can’t remember the name. (I’ve heard this before. The last one, Benlysta, which was just approved after 50 years of no new lupus drugs, now is seen as “old news” and “not really effective”)
I ask her if she knows of any clinical trials I would be eligible to participate in.
None, she tells me. Because you’ve had breast cancer.
She orders a copious amount of blood work and sends me to the lab. I love the round, sweet phlebotomist with the Russian accent and sigh happily when I see her in the lab. She’s a master with a blood draw. Can barely feel the needle go in.
While tying up my arm she asks me if I’m nervous. She says lots of people are nervous and behave erratically because of a fear of needles. (I love hearing those stories for some reason.) I laugh and tell her I’m ok and needles don’t bother me. I relax my head against the wall and close my eyes while she masterfully starts drawing blood and telling me all about her little nephew and how we share a birthday. I love listening to her talk. Accents are like music.
9 tubes later and I’m done. NINE. I watch as she writes my name and birthdate on each tube and think there must be an easier way. Seriously, it’s 2011.
I make a mental note to research blood vial label makers.