The appointment with C. when I was prescribed the oxygen for home use went so badly I didn’t write much about it. I cried; I basically begged. My pain therapist had thought my case warranted a prescription for narcotics, and made me feel like I mattered, like how I felt and feared mattered. The nurse I talked to that day made me feel the same way. But at my actual appointment, C, who, to be fair took a very long time with me even though I was double-booked, said over and over “I hear what you’re saying, but…”
BUT she did not hear what I was saying. Or she did, but she didn’t care. She didn’t care that I had wanted to die in that ER that night, that I was screaming and kicking and out of my head crazy. She said her first thought was a “drug reaction.” She didn’t even believe the headache was REAL. She ended the appointment by saying “Your treatment is up to you now. And God.”
Enough said, right there. God? Really? No matter that I’m an atheist, that was not appropriate. No narcotics for you, but here, have some air, and some Holy Spirit. And use Sumatriptan injections instead of the tablets that work for you so well. Even though they’re on like permanent backorder, so you can’t even get the auto-injector anymore. She had no idea. I had to pry open the cartridges and use a Q-Tip to depress the plunger. And not once have I gotten satisfactory results from an Imitrex injection since I got the prescription. The tablets still work better, and it’s not just the convenience, though that’s part of it. Even though I no longer work, I don’t have the kind of life where the minute I feel a headache coming (EVERY DAY) I can lie down with an injection and an oxygen mask on my face for an hour. Sorry, no. J works all the time because we’re broke. And the kids are now home for the summer. I am grateful for the oxygen, don’t get me wrong. But like most things, it doesn’t really stop a migraine once I’m above a 4. And for clusters, a bit more than the 10 LPM I was prescribed is required. In the hospital that oxygen was like RUSHING at my mouth and nose like a gust of wind, which is why it worked. I now have my tanks set at 15, the minimum needed to help break up a cluster, but my new clusterhead buddies tell me 20-25 is best. And my machine only goes up to 10, no higher.
So I have been feeling overwhelmed, full of anxiety, and scared. Invalidated and scorned. Continuing to get pain meds through inappropriate means (VERY inappropriate at times, which I’m not proud of). I was fully honest with my new GP, Dr. S, today. She is an osteopath and not big on prescribing. Wonderful with women’s issues, in an office that welcomes any and all patients, even those on Medicaid. Dr. S cares, compassionately, for the WHOLE patient. She had referred me to a pain clinic she likes to get pain meds, and I never went because I was so afraid to cross Dr. T. She had ordered a bunch of bloodwork, and a mammogram, and there was a weird result to my glucose test which made me feel not super keen on Dr S because apparently according to that test I was “pre-diabetic.” Turns out the one swig of Coke with which I took my pills that morning skewed the test, and my glucose is fine. And she was horrified by my ER experience and said that while she really doesn’t write for pain meds for something complicated like migraine, she really really wants me to go to that pain clinic she recommended, and if the fallout with Dr. T is that severe, maybe she isn’t the best neurologist for me, best in the area or no. I took a deep breath and agreed.
When Dr. S came back with the paperwork, she had even written me a tiny script for Norco, because she felt it was the right thing to do. I almost wept. The new pain clinic hasn’t called yet, but I should be able to get in there in just a few weeks for an appointment.
Because no matter how much I respect my neurologist, I KNOW my pain. And I know I need occasional narcotic pain medication. I am my own advocate, my own voice, my pain’s voice. I deserve the best, open-minded care, tailored to ME. No matter how hard I have to work to get it.