This May Be Like This Forever….

When you receive a diagnosis of something like chronic intractable migraine, you immediately begin researching a “cure”. There has to be a “cure” a “fix” something to make it go away. We are taught throughout our lives that if you get sick, you take medicine, you feel better. That is what is supposed to happen. But the reality is..there is no cure for migraines. In fact, until recently there wasn’t even a drug specified JUST for migraines. For the past however many years, doctors have been using trial and error to deduce which concoction of medications will MANAGE your migraines.

For years, I served as a lab rat for all the specialists I went to see, each time leaving with a new pill to take and try for a few months to see how my body chemistry reacts to this medicine. Migraines are COMPLICATED. Studies have shown that a person is born with a genetic predisposition for migraines. So what does all that mean…..WOW, I could have this forever. Coming to terms with that, has taken me some time. Yes, I have an arsenal of drugs, lotions and potions in my toolbelt. Yes, I was hospitalized for 10 days, on a constant infusion of medication to try to settle my nervous system down. But no matter HOW many pills I take or trips to the hospital I make, I WILL ALWAYS have migraines. I read a great quote the other day, that said that migraines are like having asthma…its always there. It may be managed but its always there. There are stories of women who grow out of them, but they are mostly linked to hormones, which my migraines ARE NOT.

The emotional toll coming to the conclusion that you will forever be plagued with this horrible illness, can seriously knock you down. Like deep into a dark place. You have to decide…how do I want to live with this illness. Miserable and negative, or miserable and positive. I choose positive. Yes, there are days I cant leave my home..and cant care for my child. But there are also days when I have little to no pain, and can live a semi normal life. But you have to make adjustments to your life as well, which can take time to really settle into. You make choices. Do I drink the wine tonight and have a headache tomorrow, or do I not drink the wine.

When I lived in Oregon, I had the most AMAZING neurologists, who also happened to be a migraineur and had all the same surgeries I have had on my cervical spine. He had a no bullshit attitude, which I appreciated. He used to tell me; Emily, you will have this illness forever, and sometimes you will make bad decisions that trigger a migraine, but don’t let that ruin your life. You have to keep living. Figure out how to live within your box, you will be a MUCH happier person if you do this. So, that is how I chose to live. Call me Pollyanna, but I am going to make lemonade out of these lemons I was given!

I hope (and pray) that through advocacy and education, there will be a cure for migraines…but for now, I will have to just manage with the tools I have and keep going, if not for me..then for my son and my little family that we worked and prayed SO hard for.

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