During my break from blogging I had time to evaluate how I really wanted to use my blogging platform. Did I really want it to use it just to recap all the fun adventures of being a suburban stay-at-home mom? Or do I want to utilize it’s potential so much more? Would I be brave enough to tell the hard-to-share stories that are really the fiber of who I am? Stories of fear, loss, sickness, and great joy? 

Stories like my journey to an epilepsy diagnosis. 

I know the images that flash through your mind when you hear the word epilepsy. People flailing and thrashing about on the ground. Blackouts. Foaming at the mouth. Confusion about what to do as the bystander–put something in their mouth to stop them from biting their tongue–or don’t? An overall uneasiness, because maybe you’ve never really known someone who has epilepsy–but you’ve seen really really weird and sick people with it on TV. 

So, that’s what I thought about epilepsy, too. Until I was 25. And woke up from a nap one Sunday afternoon and couldn’t walk. Or talk. Or dial a phone. Or stop drooling. At first, my husband thought I was pulling his leg, acting like I was sick as some cruel joke. Then, he realized I wasn’t–and started to panic. 

After trying to dial one of my closest girlfriends multiple times (who husband, Erik, is an ER doctor), a number I’d dialed thousands of times before and not being able dial in the correct order, we knew something was drastically wrong. I began to sob as Griffin spoke with Erik we were told to pack a bag and head for the hospital. He advised to be prepared to stay. 

In our short drive, the gravity of what was happening began to set in. I was sick and something was very wrong. The next few hours are very blurry–for obvious reasons, my mind was not working as it should. I remember arriving at the hospital and being whisked back without ever sitting in the waiting room. As I was processed through triage and into a room in the ER our friends and local family began to arrive. It was at this time I realized that Griffin should probably call my parents and let them know something was wrong. The next thing I remember was the horrible headache like nothing I’d ever experienced. 

The next hours came in brief snippets, my parents arriving, a battery of tests, vomit, our pastor praying, and being admitted into a room. 

I stayed in the hospital 5 days, with my ‘episodes’ occurring’ at the same time every night. We heard rumblings of a diagnosis of MS and complex migraines, but nothing definitive. Finally, after many days of begging to be transferred to another hospital with more advance neurological care, they discharged me. 

I was told that I had experienced a TIA (A transient ischemic attack or TIA is like a stroke, producing similar symptoms, but usually lasting only a few minutes and causing no permanent damage. Often called a mini stroke, a transient ischemic attack may be a warning. About 1 in 3 people who have a transient ischemic attack eventually has a stroke, with about half occurring within a year after the transient ischemic attack.).

They sent me home. No medicine, no follow-up care. I was told that just as a precaution, I should avoid foods that could induce complex migraines such as chocolate and caffeine, and I should be fine. 

Return tomorrow for Part 2, in “My name is Kate & I have epilepsy”