I was discharged on Thursday, May 26th from a two-day Video EEG. The first thing the nurse said when she saw me was, “Wow! You look different!”. Apparently the leggings and pajama dress with my hair in a bun hiding all the superglue was quite a change from my lumberjack red plaid flannel shirt and mismatched purple plaid pajama pants with hair that resembled Medusa – wires and frizz flying all amuck. I smiled and thanked her, but inside, I was pissed. “Whatever”, I thought. “Why wouldn’t I look like shit? You just put me through 24 hours of no sleep, took away the meds that made my brain somewhat normal, flashed strobes in my eyes and made me hyperventilate to try to prove to you that I had seizures.”
Some people’s kids.
I’m 46 years old and I don’t care anymore. I’ve spent my entire life worrying about whether or not people think I’m a decent person, contributing something worthwhile to society and trying to qualify for their approval. I’m done with all that now.
The closer I get to 50, the fewer shits I give.
I’ve been sick since November with what my former doctors called atypical migraines. I was dissatisfied with this diagnosis, because I can’t imagine someone going through a migraine for six months with no relief. So I requested a referral for a 2nd neurology opinion and then went to find another primary care physician. I also started researching conditions that fall hand in hand with EDS, one of my main genetic faults. All I wanted was answers. I wanted to know why I couldn’t remember anything, why I couldn’t form words, why I pissed myself, why I could feel electricity in my brain and why on earth was I not getting better with any of the meds or lifestyle modifications that they recommended?
This is not going to be a thousand pages of “woe is me”. Get that straight right now. This is a memoir. It’s my life’s story.
There’s some heavy shit in here.
I’m not going to pretty it up so that you can be comfy with it. If you don’t like it, stop reading. Leave this site and go watch some TikToks or harass people on Facebook (but shame on you)
If you disagree with me, tell me, but let’s have a conversation about it. None of that passive-aggressive bullshit. Oh, and you’ll be interested to know that I was a youth minister for 17 years before I started using cuss words. It’s a new thing. I personally hate it and feel guilty about it because my momma raised me better. But right now, as I start this journey, I feel like I’m a grown ass woman and I can say what I want.
Maybe I need that kind of power right now. Maybe I need to use cuss words to be bold enough to tell you the really bad stuff. I don’t know, but I’m asking you for a little grace and understanding. I am still a Christian and I know for a fact that God still loves me. He might even love me a little more because I’m kind of like the prostitute at the well. I need Him. I’m dirty. I’m broken. I know without a doubt, there is a God and that He is in control. I know this because so many times, I’ve begged Him to kill me, and when He hasn’t, something better comes along.
Finally, I’m a wife of 25 years and a mom to two great kids. They are young. We tried for 13 years before God gave us our first miracle and 2 years later the second one came along. So I’m not going to tell you anyone’s real name. Because they have to live and grow up here and we live in a very tiny town where everyone knows what kind of toilet paper you buy and how late you stay up at night.
So, put your fat pants on, take your bra off, grab a cup of your favorite drink, a ton of your favorite snack, get comfortable and hold on. I’m about to tell you all the things I’ve been trying to block out. You can find them by clicking that little word “Blog” above. I hope you’ll find some laughs, maybe shed a few tears, see something we have in common or just enjoy some of my rambling. In the end, it’s my biggest wish that you find some hope here.
Because every little thing is going to be alright.