PNES: My Blackhole Journey to Treatment
“My life is just like dominos”
For the last month (almost two months), I’ve been having these “seizure like” episodes. I couldn’t tell you how many night I spent going to the ER. Every single time we would go, they would give us a different answer.
I finally got my neurology appointment boosted (yay!) , to see what was going on. He suggested I get an EEG (which I already had one and it came out negative, but ok boomer), and if the results are normal, I would have PNES. Well, here I am. Writing about my diagnosis with PNES. But this is only the beginning of a dark road.
My neurologist said that there was no medicine he himself could put me on, and that my psychiatrist would have to go to the underlying cause of them. However, once I went to my psychiatrist, she also said there was nothing she could do, because to her they look more than “psychogenic”. Ok great, this again.
My seizures come and go, but when they come, they happen unexpectedly, and I always wake up confused. It saddens me that there is no treatment for this, I just have to deal with it.
The psychiatrist did say to get a second opinion from another neurologist, so that will be my next step. In the meantime, I hope you’re doing well. XO
Being a Teen with Chronic Illnesses
My prom was ..... interesting
So I think most of us are familiar to the sayings “yOu DoN’t LoOk SiCk”, or, “ yOu’Re ToO yOuNg To Be SiCk”. Like, okay, Karen thank you for your unwanted opinion. Anyways, let’s get a little deeper.
Let’s be honest my fellow teaspoonsies (hehe, I’m sooo innovative), I think we can all relate to the fact that at least once we’ve wished we were like “normal kids”. Not sick all the time, able to play sports, able to go to school everyday- it sounds like a dream. The only thing I got to do that the “normal kids” did, was go to prom. But not the kind of prom that you’re familiar with - my prom was in the hospital.
Being at that prom in the hospital made me feel special for once, but at the same time, there was still an empty feeling. Being a sick teen is hard. You miss out on a lot of things. But the ones that do have the opportunity and strength to live a “normal life” - I salute you with love. Gentle Hugs.
How COVID-19 is impacting me and my Family
This is more than just a “virus”
It’s been almost a month since this virus came out and spiraled out of controlled. At first people didn’t take it seriously, then governors and the president declared state of disaster. Everyone started panic buying. Food and supplies became scarce. I was constantly told to not leave my home because of my immune system. I watched the news constantly to see what was going on. I fell into the hole of a deep depression and severe anxiety.
I stopped watching the news a few days ago, just because I couldn’t handle it anymore. It was the same stuff, but with words like “worse”, “death” “rising”. I sat outside in my backyard without fear to get fresh air. But then we got a call - my father tested positive for COVID-19. Emotions raced through my head. I went numb for what felt like minutes. My dad was the only one working and supporting us. I was afraid he would die. If he died, we wouldn’t have a home, or anything at all.
This pandemic has given me so much anxiety and sadness, I think it has been a while since i’ve smiled since this has happened. I’m just ready for this to be all over with, i’m ready for things to be normal again. Rant over.
Please stay safe and take care of yourselves. I love all of my fellow spoonies of all ages. gentle air hugs.