Warning: this is an intensely personal piece and I’m not sure why I’m posting it at all, except that some people I know have been encouraging me for awhile to write more about my illness or disability in general. So blame them.
(By the way, you aren’t supposed to read this and feel pity for me. Just understand better what it’s like to be chronically ill – and maybe experience your own health a little more sweetly, or take comfort if you are ill, too.)
I got up much earlier than usual this morning, so that I could be at the hospital imaging center by 7:45 a.m. I was scheduled to have an MRI with contrast of my pituitary gland. They do pituitary studies early in the morning, I was told when I called to schedule the MRI.
I was having the MRI because my endocrinologist ordered it. I have an endocrinologist because my prolactin levels are elevated. My hyperprolactinemia is the result of either (A) a prolactinoma, an adenoma of the pituitary gland, or (B) a side effect of metoclopramide, which I take to treat migraine pain. I take metoclopramide, because OTC pain relievers like aspirin and Tylenol and Aleve and Excedrin bring no relief, and because I can’t take narcotic pain relievers anymore. Over the past four years I’ve taken, at one time or another, relafen, promethazine, seroquel, vioxx, naproxen, vicodin, tramadol, vicoprofen, darvocet, percoset, demerol, dilaudid, fentanyl, and thorazine to treat migraine pain. I can’t take the narcotics anymore because I’ve developed a high tolerance (which was a scary issue when I had two abdominal surgeries in 2005, and the morphine was barely cutting the pain) and because my neurologist thought the narcotics were causing rebound headaches.
So, the MRI is supposed to help decide between options A or B. Prolactinomas are benign tumors and relatively easily treated, but still, I’m hoping for B. But then I don’t know what I’ll do. Metoclopramide is my first line of defense against migraine pain; it’s somewhat sedating, but not terribly so. My neurologist had me try switching to Aleve, but that was like eating candy pills. Seroquel works well, but is very sedating, and thorazine just turns me into a zombie for a day and a half. It’s reserved only for the very worst migraines. If I can’t take the metoclopramide, I fear I’m just stuck with seroquel, and every migraine, even the minor ones, means hours and hours of sleep, and a foggy feeling afterward. With metoclopramide, I could often be down for just one or two or three hours and be almost like normal afterwards. I see the neurologist tomorrow for my three-month check-up and another botox treatment. I hope he’s in the mood to be creative about pain management.
And speaking of pain management…when it came time to inject the contrast agent for the MRI, the technician was either not experienced or was having a bad day. I know I have small veins, but on the first try she dug into my right arm at a spot that wasn’t even near the vein. It was so painful it made me cry, and after four years of constant doctoring and hospitalizations, I am used to getting stuck. It hurt after she withdrew the needle, for a good five minutes. It wasn’t till her third try that she got a needle in, using a pediatric needle. By then she’d stuck my right arm, left arm, and left hand. I felt shaky and upset, and yet was trying to hold my head still and in place for the next scan. I was mad at myself for feeling so distressed over the injection. Lying there listening to the loud gradients knocking, it was all I could do to keep still and calm till the scan was over. This happens to me now and then – I will think I am perfectly fine, and then some small thing will disturb my careful equilibrium, and all the grief of what I’ve lost and the turmoil of the past four years comes boiling right to the surface, pounding against my chest, welling up and spilling out, and all some poor technician trying to do her job sees is that the patient is crying over a needle stick.
I still had to go to the lab to get blood drawn for further tests after the MRI. Since I take plavix, I bruise easily, so you can imagine how my arms look now.
I wish this week was over already, but even when it is, I still have the return visit to the endocrinologist on the horizon, and finding out the results of the MRI, and who knows what else after that. I am so tired of going to the doctor. Believe me, I am aware that I am not as ill as some of the people I see in the waiting rooms. I accompany my mother to the doctor a lot, and I know old age can have much worse in store for all of us. My mother is sick of being sick, too. I’m lucky that my doctors are very good doctors, and good people, and I’m lucky I have health insurance, and I’m grateful for those things. I just want to say to you: if your life only includes a yearly check-up and maybe a visit once in a while for some minor illness that’s easily cured, count your blessings. I miss that life. What I’m tired of is having an illness that never gets cured, only managed. I suppose that’s better than one that kills you. But I’d rather have none at all.