Life

I’ve been away.

I’ve been busy. I have been active and involved and in less pain. I am in a play, The Best Christmas Pageant Ever. I’ve begun volunteering at my local Historical Museum.

I’ve been participating in a Chronic Migraine Study.

I’ve been happy. I’ve been following the news. I’ve been angry and sad. Tired and irritable. I still get headaches and other migraine symptoms every day. But the difference between now and a year ago is that now, I feel I am living an actual, real life. Where I see people and do things.

Today, I was injected with either saline (the placebo) or a CGRP drug that is in trials for migraine prevention. This morning, I had the worst migraine I’ve had in a few months. I almost had to cancel my appointment in Ann Arbor, but the research nurse there who is my friend was able to move my appointment back. The headache was returning after vials of my blood were gently extracted by the sweet lab nurse, but after the two subcutaneous injections (double blind), it receded and I felt a faint hum in my brain stem area down through my neck and into my arms. That feeling lasted all the way home. I now have a very slight, sunburn kind of headache on the opposite side from the one this morning. Not enough pain to even take Tylenol. I am exhausted, but in a good way.

J found out some bad news about the agency where he works this morning, at a mandatory meeting. Part of the bad news is that they will no longer be paid for mandatory meetings. Nor will spouses be covered by insurance plans (we’re on Medicaid). Nor will there be any raises, ever. Nor can anyone use personal days around the holidays. Just to clarify, j makes 31,000 per year as a children’s crisis counselor. We had thought he could get his MSW and be promoted at the agency but that will no longer be possible. It is back to the drawing board.

However, we also got other news today. The migraine study has an Open Label phase, when I will get the real drug for sure. I have been afraid to ask how long that lasts, imagining my life changing significantly for the better and then having the drug removed again, years from being approved by the FDA. But my friend informed us today that the Open Label phase is in fact quite long. Shockingly long. I burst into tears, my entire life changing before my eyes. Nearly a cure, this drug has had no side effects and has been shown to be very effective so far. And it is being handed to me by a friend, at a world-renowned headache clinic, on a platinum platter. I could not have dreamed up this scenario in my wildest Life Without Migraine fantasies. It feels completely implausible, like I could wake up from this dream at any moment, a new and familiar headache crushing my skull as one did this morning after a 30 degree temperature drop and only 3 hours of sleep.

My life has been pain, tears, a bed, these four walls. What lies before me now?

What lies before any of us?

IMG_9414.JPG
The explanation I posted recently for the lack of Migraine365 posts

IMG_9358.JPG
The grounds of the museum where I am volunteering, on a snowy day

IMG_9336.JPG
My main task is to catalog many boxes full of old record albums: 78’s, 45’s, 33’s

IMG_9429.JPG
Our cast t-shirts

IMG_9453.JPG