10 Things I'm an Expert on Because of Migraine Disease
- Napping- I have been called a world-class napper. When my body says it’s had enough and the pain is unbearable, I’ve been known to fall asleep in the car, on the floor of the airport, on the sofa with 10 other people in the room,or on the floor of my apartment because I just couldn’t walk one more step and the floor seemed like the perfect place. My body needs a nap at least once a day. There were times when it would be a two to four hour nap as I completely shut off my one hour alarm clock. I have gotten better about sleeping only one hour during the day, unless I’m in a really bad attack. Consistency is key with sleep patterns.
- Faking It- I’m really good at faking being well. I think most of us are. When I have to get through an important event, a conference or meeting, I can turn on the charm and seem competent. But sometimes as soon as I walk out of the room my entire body falls into itself and you can see the exhaustion and migraine all over my face.
- Giving Myself Shots- In order to avoid the ER at all costs, I have Toradol and DHE to inject into my thigh. For the first few years I would fill the syringe and sterilize the area, but preferred someone else to do it. Now, I can probably do the entire process for one of the injectible drugs within 90 seconds.
- Asking for Help- I wrote an article a while back called “Help Not Wanted,” because I didn’t know how to ask for help as my life was being turned upside down. I’ve made good strides in either asking for help or being honest about not feeling well without feeling guilty. I’m sure there are even more ways I can improve in this category.
- Being More Aware of Other’s Needs- I’m a pretty compassionate person to begin with, but I find myself mindfully giving people the benefit of the doubt. It could be a mother with a bunch of screaming kids in the store or a perfectly normal person parking in a handicap spot. I recognize that I have no idea what their stories are. You never know where they are in their life or health journey.
- Knowing When to Educate or to Walk Away- Another situation that often arises is when I tell someone I have chronic migraine attacks and they think they are an expert because their cousin eats kale shakes that stopped her headaches. Good for her. In both cases, I assess the situation and decide when it’s the right time to put my professor of health hat on and educate them or simply say, “Thank you,” and move on.
- Interpreting Doctor Speak- A large majority of patients who have chronic illnesses often say that they know more than their doctor. If they aren’t seeing the right specialist, this can be very true. Through my struggles of finding the right doctors and treatments, I can fall back on all of the medical rabbit holes of the internet I find myself in at 1am to learn all I could about my disease. I use every single minute of my appointments to get my questions answered and provide the doctor with the most pertinent information in changing a treatment plan. I’m pretty good at interpreting the special language that only doctors have and be able to translate it into layman’s terms, so that I walk away knowing we are on the same page, even though we speak different languages.
- Spending Time on Hold with Insurance-No stone goes unturned until I fully understand why I owe any money from getting blood work to an in-patient hospital stay. On more than one occasion, the billing department has been wrong. Dealing with insurance and billing can feel like a full-time job, but I’ll stay on hold for 45 minutes if it means I don’t have to pay a $500 bill.
- Enrolling in the Affordable Care Act- Whether or not you agree with the politics of the ACA, I would be screwed due to a pre-existing condition. After countless hours of research to understand the system, my friends come to me to help them navigate the process. It actually brings me joy to know that they are getting quality healthcare because I spent a few hours making sure to find a plan that fit their needs. (No, you can’t call me to do this for you! LOL!)
- Finding Ways to Enjoy the Little Things- I can’t always go to a BBQ, go to a concert or even have the energy to have a lengthy phone conversation. But in the times where I am out of my vampire cave, I find beauty in the street art, I stop to pet a friendly dog, I take video I’ll never watch of the tiny little birds that scatter around the shore line at dusk because I think they are hilarious.
What are you on expert on?
Can you tell when a migraine attack is coming?