My mind is locked in a circle. Bad. I keep writing the same stories over and over. Adding little bits here and there…but the same basic story. Again and again and again.
I always let Benton read what I’ve wrote to make sure it makes some kinda sense. And often he’s like ummm you’ve talked about all of this before. And sure enough I’m repeating myself over and over. It’s weird to say. But it’s almost like I am stuck in 2020 - Groundhog Day 2020 style.
I don’t mean to harp on it. I try to not think about it, and I fail. Miserably. Everytime I have a doctor or therapy appointment it throws me right back into it all. Everytime it’s a first time appointment the whole story comes out…I feel like I have to take a deep breath and spit it all out at once…just to get it over with. They always ask first thing ‘well tell me what brought you here today?’ I start talking about stroke, therapy, I can walk now, eat now drink now, had facial reanimation surgery, and here I am. They just politely nod, and say uh huh uh huh … while reading my medical summary, it’s long…I finish my version much quicker.
And then every single time they stop. Look at me 😳 and say … so basically it’s a miracle you’re sitting here today.
Yep, I got it. Let’s get a move on Tommy and Brenda brought me…they’re gonna get hangry.
People reading my medical history literally just stare at me and ask me EVERY single time ‘woah. Do you realize how lucky you are?’
And every single time I think, and sometimes say…ummmm that report you are reading…that ain’t nothing. LET ME TELL YOU about MY 2020…my life was hit head on 1/13 and then imploded from there…
I know I’m severely blessed to be able to even breath on my own, to really be able to do anything…Let me get all technical for a second.
Every 30/40 seconds there’s a stroke In America. 5% of those are hemorrhagic.
And then 5% of that 5% are in the pons(pontine)
And even less are in the primary pontine(grand central station of the brain)
It all equals out to out of every 100,000 strokes(which are rare themselves)…TWO (2) are primary pontine hemorrhages(PPH).
This is where it gets crazy.
so that would be 2 (PPH) strokes about every 3 years… of which there is about a 19% chance of surviving, and that’s in a Locked in State(LiS)…not fun. So living and functioning on my own, is a total miracle. It’s hard to think about. This is not the lottery I wanted to win.
PPH strokes vary in degrees of severity depending on the amount the pontine is flooded (although a pontine hemorrhage of any kind is horrible)…mine was at 100%
They basically thought I would be in a permanent Locked in State…so any attempt at surgery was out of the question, and useless. N
Thank Jesus for the cavernous malformation in my brain…most people have them just randomly in their brains (raspberry’s that bleed randomly, and reabsorb fluids-to keep pressure in the brain balanced) mine my some miracle of god is placed directly in my pontine. So…I think it started reabsorbing the hemorrhage as fast as it could which saved me. That can not be medically proven, I just think that’s what happened.
If your stroke is hemorrhagic and in the primary pontine…your basically S.O.L. shit out of luck.
The pontine controls everything that you don’t have to think about. breathing, eating, organs, nerves, muscle. Everything. So once it hemorrhages brain tissue immediately starts dying. Quickly. And there’s no surgery they can do in a PPH situation without essentially doing a lobotomy. SOL
ALL THAT. And I’m like take a seat. Let me tell you the real story … that was child’s play. My life really imploded in March 18, 2020. Two days after my birthday…
I tell them that story and get 😱
And here I am telling the same story over again. I can’t help myself…I had a stroke. I think I’m stuck there just trying to make sense of everything.
Almost immediately after I was released it was like WHAM. BACK TO REALITY. There was no recovery. At all. Just boom. Here we go.
So I may have survived some miracle freak stroke…but then life happened.
That’s a lot to take in and comprehend…no wonder I go in circles. Just be happy you’re not Benton. I talk about this nonstop. 3 o’clock in the morning, or 5pm as soon as he gets home.
He listens. Non stop.
And yes. I can hear Trey constantly telling me to shut up and move on. But, I have to understand everything and there’s a lot to get to.
Been doing a lot of thinking about the future, and what to do. I can’t sit in the house, go on walks, and do housework much longer…I need purpose.
Benton and I have had totally life hanging experiences, and we are trying to piece all that we know back together best as we know how…and we are making, and have made some major changes in our lives.
I don’t know when, or if we will be ready to talk about everything. We have really pulled back, and stayed to ourselves…and honestly we quite like it.
Our closest friends are Treys parents. Honestly without them I have no clue where I would be. I know Benton feels the exact same way. Anytime we don’t know what to do, or we are panicking we go to the Strocks. It’s automatic…need to feel better…go to boca vista phase 3.
Yesterday after the Abbey I fell asleep in the car. We usually always go by the strocks. But Benton knew I was hungry so he asked T&B to meet us for lunch. I woke up and there we were having BBQ with the strocks. We spent all afternoon talking about websites, phones, fonts, bee poop, and saw dust.
Just normal everyday conversation. It’s so easy, and natural…but at the same time it’s so hard because Trey isn’t there, but in so many ways he is…and when I see that is when I get emotional.
This week we are getting ready to go on down to Disney. It’s scary and exciting. Disney was a yearly thing for Trey and I. Especially EPCOT. We are going with my cousin Anna, her husband Prem, and their sons Josh and Eli. So, a good distraction if feelings hit….especially because I have literally no control over them still…. Last time we went everything was starting to be changed, so it’ll be nice fo see all of the changes. I’m so excited Anna let us Crash her vacation…
Got Phyllis…will travel!!!!