Delayed posting, due to a few reasons as you will read but I hope you are educated as well as enjoy the exciting news too! Needless to say it's been a heck of a roller coaster in December. It was great getting back from Thanksgiving and having my hubby get my Christmas decor down for me, to begin my decorating of the house each day, because he knows I LOVE Christmas and making the house look even more beautiful. Daily I was working on it, while Christmas music playing made me smile, and of course extra excited because my oldest, would soon be home as well on December 12th. (so of course it had to be done by then, and we also had a special guest coming Broc's Godfather for his special December day too)
Booster shot start of the month...well knocked me on my butt...enough said there.
As I mentioned in my previous blog I was scheduled to wear a Heart Halter monitor from November 19th until December 29th. (Let me tell you, the day I got that thing off, was the biggest relief!) There is potential of various things going on, that my Mayo Doc and the Cardiologist here, want to see if my heart is causing my Epilepsy to be chaotic at times or if there is are potential other issues. I have always grown up with syncope spells (extremely low BP which can make you pass out without notice)...sometimes my HR drops during my seizures or just standing up too quick....so is it just syncope spells or are they Drop attack seizures?? They are also looking at the potential of Cardiac Seizures.(defined by Medtronic as "The heart beating irregularly, there can be sudden loss of consciousness and collapse due to lack of blood flow and oxygen to the brain. Sometimes there can be seizure=like movements, twitching etc. at the same time") Keep in mind if this was the case it is NOT Epilepsy, it would be Cardiac Seizures.
Here is a pic of the BioTell Heart Halter monitor I had to wear. The 3 electrodes connected to my body, the MCOT Flex adapter hung around my neck connected to all the wires and collected all the data. The cell phone you see there is what I pushed or someone else pushes if I feel certain events come one or faint. It was monitored 24/7 and if the faint button was pressed, we received a call immediately to see if 911 needed to be called.
Sure enough my first time Brent & Broc actually pushed the fainting button because it was not my "normal" fainting like my seizures on December 5th. The monitor showed I experienced a "Sinus Tachycardia" with a HR of 107 when the button was pushed after the fainting. Well, we explained to the lady on the phone that I was fine(she wanted to send the EMS), but she had me go see my personal DR on the 7th to be checked and she too said if that concerned...why not directly to a cardiologist. Who knows we thought. So said and done right......
December 12th and my heart was probably racing all that day because I would soon have my 1st semester college student home and all my men around me again...which always makes my heart full. He gave me my 1st BIG Christmas gift and made this mama VERY PROUD and my heart so full, because I knew how hard he had worked all semester at ERAU's Honor Program.......he made the....YES HE REACHED HIS GOAL STRAIGHT A's!! Dean's List 1st semester!!!!! Can tell you enough how proud I am!!!
It was also a very busy week of finals for Broc and his official signing day to play baseball at Gulf Coast College in Panama, City! He has reached his dream of playing in college, and has busted his butt and continues to do so, as he knows much work yet to be had. (So VERY PROUD of his work ethic to reach his DREAM)We were lucky enough to host it on the 17th, a Friday to make sure his big brother would be back from college, a few older classmates/friends that played with him last year, his godfather made it to town.....but he had 2 finals left on that day. Plus since school was only open a half day we were very appreciative of The Clubhouse letting us host it there, along with his AD, Head Coach and current teammates as well.
But......about 2 hours before.....Brent is at work, Broc is finishing his last final, Ryun is out for a run, Bryce is eating lunch. I tell Bryce I am going to go take a shower and make sure I am ready when all get home so we can go set up. I started feeling a little weird tingling on the top of my head, but brushed it off cause I wasn't feeling anything else......this is what happened as I went to get ready (you may or may not want to watch video) This shows me going through a seizure, going to shut our double bedroom doors, must have hit my head against them or fainted against them and fell to the floor........Bryce only one home the Heart Halter Monitor comes running to the bedroom, trying to talk to me and pushes the fainting button again :( I guess I went in and out of fainting 3x. This time a Bradycardia occurred, so the exact opposite. My heart rate had gone below 50bpm, with no explanation other than the seizure before and fainting.
At this point everyone is starting to get home and I am coming to, crying hysterically (called part of the post=ictal phase of the seizure) Except this time I couldn't control myself and unfortunately; on my son's VERY SPECIAL DAY, I had started to tell Brent I wasn't going. I could have another seizure, embarrass him, I looked awful. Pretty much looking back on it...I was like a 2 year old throwing a tantrum without knowing it but also a pity party. Brent helped me get dressed, told me basically to suck it up because if I didn't go I would feel worse of a bad mom not going and he would be more upset that way. None of them are ever embarrassed of me having seizures at many sporting or public events no matter what anyone says. He said we are going to put on your Pace pullover to cover up your heart halter monitor, throw on your lucky ball cap you wear to games anyways, your big baseball earrings, and heart baseball neckless he gave you. He helped me wipe my face off and held me in his arms, a kiss on my cheek, to bring me back to me, and NOT post seizure me. NO EXCUSES he SAID YOU ARE GOING THAT IS AN ORDER!
See from the outside others would see a husband yelling at his wife uncontrolled, but in reality he was trying to get my brain back to hearing correctly, getting myself to calm down and to make it to my baby boy's BIG DAY! When an individual who has Epilepsy and is in their Post-ictal phase, they do not always know what they are doing or saying, or remember what happened just a few minutes ago. To them they are just confused.
WE MADE IT & ANOTHER SPECIAL SURPRISE FOR BROC! Grandma and Grandpa DeVaul drove all the way and none of us had any idea. This made him feel extra special, he says you know grandpa does have all my stats memorized:) But he said drive 5 1/2 hours just to turn around to go back home.....I said that's what they do for their grandkids. (hopefully we will have pics of that soon from the yearbook)
Full team & ready to go for State Rings!
The official Signing Table Broc & his godfather Ryun
So if you have made it this far, thank you for following along. It is now our last 2 days with Ryun.....yes I didn't scare him off too bad to hop on a plane early.
I of course after I slept when we got home from the signing, from the seizure post-octal phase plus the heart condition that happened, I woke up just in time from the 4 of them back from a workout and bringing home dinner. I know none of them felt I needed to, but I did and I apologized for my behavior and almost ruining Broc's big day....you mom's out there know that feeling and those of you living with Epilepsy especially know how it feels when you need to apologize, because in your heart.
OK, well to say the least I could go on about more #MyGlitches from the 20th until the 29th (but that's enough on my pain)...but this stupid COVID19 cancelling of our special gift from Brent to travel on a Christmas Cruise for a vacation we have never done, with just our young men (not even as little guys) really threw my mental health and the ongoing health issues for more loops.
You see when you live with an invisible illness like #Epilepsy and try to hide your pain for so long, and you have so many exciting things in-between that you WANT so bad to be perfect, sometimes it sends your mental mindset and seizures into a whirlwind pattern. (the worst thing for you as a person to live with #Epilepsy to allow to happen) I myself need to learn, it doesn't have to be perfect, just enjoy the moment because the next moment may not be there. #SUDEPAwareness
So next time, especially during these crazy past 2 years someone might look like they have it all together but in all honesty they might be the furthest from it. So try to have patience, give them that hug or smile that it will be ok or just listen to what they need to say. Because these past 2 years have been hard on everyone in one way or another even without an illness to throw in there.
MUCH LOVE TO ALL MY FAMILY AND FRIENDS AND ALL THOSE THAT FOLLOW MYGLITCH BLOG! CHECK BACK ON DECEMBER 31ST BECAUSE WE ARE GOING TO HAVE SPECIAL THINGS TO KICK IT OFF RIGHT INTO 2022 WITH ALL POSITIVE THOUGHTS!! (NEW CLOTHING ADDED & DISCOUNTS TOO)