Posted in Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Seizures, Today I Win, Uncategorized

Mom and Hadley take Chicago!

We survived getting to the big city all by ourselves! My dad sent us off with farewell grunts as he lifted our suite cases out of the car. For the record, mine weighed three pounds less than my mom’s so she carries big bags too(Casey and Sally😉)!Of course our plane was delayed an hour after we went through security and then another hour and a half once we got on the plane. Frustrating!! We were a little worried how me and flying would mix, but I only put on one small show for the crowd. Once we landed and got our luggage Mom was too scared to flag a taxi so we hopped on a shuttle. What was supposed to be a hours ride to the hotel in downtown Chicago took us two and a half hours. If you know my mom….everyone must’ve been running on her time clock that day. 😉 As we battled the front desk with messed up reservations my mom discovered she’d left the folder with all of my forms for the doctor visit on the plane. We finally got everything straightened out and headed up to our room….on the 13th floor of course. We don’t travel in any other style! 

Through the waiting in tight spaces on the plane, to standing forever and again being in tight spaces with a crying baby during our shuttle adventure, and then through the mix ups, my body gave it it’s best shot. I hung in there…at some points I don’t know how. Easily fatigued Hadley plus a day full of travel aren’t exactly meant to be. But we managed. We missed all meals during the day so decided to walk down the block for my first run in with Chicago deep dish style pizza! I gagged the first bite in and settled for garlic bread and veggies instead. We walked the blocks of downtown Chicago where I learned many things!-
1- this girl’s too anxious for big city livin 
2- don’t mark your spot with a Starbucks…there is literally one on every corner
3- the city stinks. Bad.
4- Chicago goes out of their way for the “typical white girl”….everything in Trader Joes is pumpkin spice flavored 

5- Chicago runs on Pepsi products no Dr.Pepper is not okay.

Patience is ones greatest virtue

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Doctors don’t know everything 🙅🏼

Because I can’t mention every past doctor adventure in a blog, here’s a break down. 

  1. ER Doctor #1- constipated. No labs run. No tests run. Just constipated. 💩
  2. Primary Care- “you’re just dehydrated” 
  3. Cardiologist- very low blood pressure, syncope(aka fainting)
  4. Pediatric Neurologist- chronic migraine, psychogenic seizures(aka I’m crazy) 
  5. Psychologist #1- “go back to the medical side” (after full work up and several visits)
  6. ER Doctor #4- levels are off- need to see neuro 
  7. Neurologist- chronic migraine, non-epileptic seizures 
  8. Psychologist #2- “go back to the medical side” (after full work up and several visits) *did confront some of my OCD tendencies 
  9. Chiropractor-scoliosis
  10. Naturopathic Doctor- dehydration, go gluten free 
  11. Neurologist #3(St. Louis Children’s)- chronic migraine, non-epileptic seizures(no labs, no tests, just agreed with local neuro) 
  12. “Brain Training”- this was supposed to be BioFeedback…
  13. Diamond Headache Clinic- Hemiplegic Migraine, non-epileptic seizures related to HM, , Chronic Daily Migriane
  14. Neurologist #4(Mayo Clinic- Minnesota)- agreed with Diamond and their actions, agreed that was the best place for me to be 

Keep in mind this is over the course of three years. This is very vague and I couldn’t possibly list all ER doctor reactions.

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What is happening to me? 

Where do I even begin? October 26th, 2012. I was a sophomore in high school. I woke up that Friday feeling awful. I felt like I was in a weird haze, like I was two steps behind everyone else. Migraines were not a new thing for me, but that day it was a migraine like never before. I was not myself, but I chalked it up to cheering in the rain and not eating well the night before. Then, I ended up passing out in class. We figured my asthma was acting up and I was on the verge of being sick, nothing a restful weekend couldn’t kick. Boy were we wrong. 

My first ever emergency room trip was that Sunday night. I had passed out a second time and still wasn’t looking any better. We used to tell people that was the worst experience…I didn’t realize so many ER doctors wanted that award. Lol. It was then my dad and I decided that night shift ER doctors must be at the bottom of their class. In walks an old guy with hair longer than mine and a dream catcher around his neck. Here goes nothing. 

What were Dr. Weirdo’s findings? He concluded that I was constipated. When my dad laughed in his face, Dr Man proceeded to show us what he meant. Yep, we played charades. He brought his arms up and squeezed his whole body, then pretending to pass out. When the act was up he told me to take a laxative and be more careful. Too bad I wasn’t anywhere near the bathroom either time. Where’s the eye roll emoji when you need one? Lol.

Little did I know, this was just the beginning.