Giving up, picking myself up and trying again... over and over and over and...
I've had chronic daily migraine for as long as I can remember. I remember my Dad telling me in early high school that if I didn't stop taking Advil so much, I'd be addicted to heroin before I graduated (I don't get it either, lol). In my freshman year of college, I was taking 18-20 Advil at once, to the dismay of my roommate.
The summer between my freshman and sophomore year, I finally had an aura, my Mom happened to be visiting me at work and recognized it, and I was FINALLY diagnosed with migraines. Later that summer, my arm went numb during one and I was sent to a neurologist, who realized my stomach aches as a child were migraines and gave me a diagnosis of chronic daily migraine for the first time.
I've seen dozens of neurologists since that hopeful day, when I still believed a diagnosis meant a cure or at least a treatment. From the small town I went to college in, to Atlanta, Denver, and now Madison, WI, home of the UW Medical centers. From the HMO neurologists in Denver that thought I was a bored housewife (I work full time in law enforcement, thank you!) and told me I was "breathing too much" to the private headache specialist paid for out of pocket to the tune of $700 for a single appointment. I've had CT's with and without contrast, MRI's with and without contrast, maxed out on Topamax and couldn't remember my husband's name, been injected with Botox all over my head, neck and shoulders, had injections into my occipital canals, and tried everything anyone can think of.
I hurt every day. Some are worse than others, but all hurt to some degree. Nothing fixed it. Nothing fixes ME. I'm broken, malfunctioning. I run an organization of over 80 people now, and every day is a little bit harder. I'm not even 40, but i can't imagine continuing on this trajectory and being functional in 2 or 3 years, never mind 15!
I get up and keep going because I have a child I cannot bear to hurt. But I dread the day that my pain is greater than that fear for longer than I can hold it at bay. At its worst, I hate myself for waiting until he was old enough to remember me and miss me and hurt.
Every day I muddle through. Every day I watch for a new treatment, a new theory on what causes this agony and how to stop it. Every evening I wait impatiently for him to go to bed so I can escape to sleep for a few blank hours.
Every morning i wish I could bury my head under the covers a little longer (I can get ready for work in under 30 minutes, including shower- anything for 1 more minute in the quiet dark).
I wonder if the pain, and the determination that it has taught me, is why I am running a organization in the top 20%, size wise, in the nation for what we do, and one being pointed to as on the forefront of the industry, at 38. In a traditionally male dominated field, no less. Because I've learned to fight through the pain, to keep going, to find the positive in the darkest night, because it is the only way I know to get through the day?
I apologize for being such a downer. If you can't tell, I have a migraine now, and am in tears of both pain and hopelessness.
Things will be better in the morning. (Now I sound like Scarlett O'Hara!)
Community Poll
Do you feel comfortable advocating for yourself to your healthcare provider?
Join the conversation