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Monday Motivation (boys coming home) after a mixed feelings prior week

Week of active #Seizures

I am proud to say though, I have not missed a day of at least some type of exercise to try and keep my body and mind connected better! I defintely feel a mood change during exercise, but for some reason,as soon as I am done my mind goes negative on ONLY myself, not others.

As I have said before, my seizures tend to go in stages. Good days for about 3 which are mild ones and at times I don't even realize I am having them or I don't have, followed by 3-5 days of ones that exhaust me. The issue I have been having are more and more #NocturnalSeizures. (seizures that occur when you are asleep, typically these happen when you are within your first few hours sleeping and then within the few hours right before you get up from bed) By these happening my body is not getting the rest it needs and then mental side is off as well. The positive side is since I do not have #ConvulsiveSeizures or known as #GrandMal, #SUDEP is not as common. (However; obviously it can happen to anyone......hence my mindset has not been in the positive side.) We contacted the dr. and he did say they have been more active but my #RNSDevice has been stopping them from fully developing. The dr. did say obviously; this still is very draining on your body, reminding me to listen to it during the day because my other seizures would then be more active, due to lack of "true sleep".

Brent leaves town for work & he had a special night planned for us last week

I of course was bummed at first because I was beyond excited when he purchased tickets for Dirty Dancing in Concert in downtown Pensacola. We were going to cancel because it was a night show, and my seizures are typically more active and he knows my #aura signs best. Then he said you know what, why don't you go with your girlfriend and have a night out. (after all, I can't remember the last time I had one of those!) Right before she arrived to pick me up, Mayo called to check on me due to seeing even more activity day and night. So as I waited for her to pick me up, I let my stupid brain get the best of me and emotions flowed. The fear to go out, what I have a bad seizure and ruin her night. Tears flowed...but then I watched a Dirty Dancing clip, and I wasn't going to let this place me in a bad mindset. (my dancing lovers, know I LOVE all types of dancing and this movie is one of my favs!!)

When I got in tha car, I gave her a heads up, just for safety reasons, but she said GIRL, don't you worry about a thing. I got ya and Brent on speed dial, then she chuckled. I was so excited she was able to go with me and we had a fun night out! She showed me downtown Pensacola shops; which I had never been too, and the Ballon Alley they call it here. All the Christmas lighted Palm trees, lifted my spirits and soon I was not thinking about seizures at all. (Christmas decor and season is my absolute favorite) See it has been proven when a person with certain types of epilepsy, can trigger seizures, just by their throughts. So I had to change that! We enjoyed a great meal and headed to the show and had an AMAZING time!! I did have my normal time seizure, due to how late the show was, but I sat down as I felt chest pains, and she noticed I looked off. (See at the end of the actual show they had another hour of true dancing, and boy I needed that!) She stayed calm, watched me and comforted me and as soon as it was over, I was up shaking my groove:) We headed home at 11:30, which for me I am in bed 10pm and meditate to help calm my body and try to be to sleep by 10:30. So she knew this and walked me to the door, and wanted to stay the night, but I reassured I would take one of my rescue meds and be asleep fast and safe. I had to text her as soon as I was in bed, and when I got up the next morning to let her know i was safe. I am blessed to call you my dear friend, I met via my sons when in HS/college.(THANK YOU DEAR FRIEND & OH HONEY FOR THE AMAZING TICKETS)

Prep time for my boys coming home which of course meant I was on overdrive!

Of course my given personality I want everything to be just perfect, eventhough I am sure they don't care. The house needed to be fully cleaned & decorated for Christmas, because we are never home for actual Christmas. Now with them in college too, they wouldn't see much of a Santa House, but maybe a week at most during Christmas break. So the whirlwind began of me making Brent take out all the Christmas decor so I could get it all ready for my boys which adjusting to being empty nesters has been tough as it is. I also made sure to tell them to not worry about laundry this week since they had midterms, just bring it all home and mom will wash it all up. We then of course had to go get all the special treats for them to have with Thanksgiving meal and all inbetween:)

Due to this I did experiance some seizures here and there, because I was not going to let anything get in the way. The seizure type that occurred are known now as #FocalAware: During this type of seizure there is no change in a person's awareness even if they are not able to speak or respond during the event. (so think of it as they can hear you but their mind is elsewhere) Things can occur with the body during this type and make the body exhausted afterwards. The other type are #FocalImpaired: During these a person is not aware of what is going on. I typically have repetitive automatic movements, changes in my heart rate and BloodO2 levels, stop talking, and confused look, anxiety, changes in speaking if able to try and talk, hearing/vision can change, tingling on top of my head and arms...pretty much cognitive/emotional changes occur in your body. At times during both of these Brent will pick up on something I am doing before they even come on.

So goodnight & Happy Thanksiving to all and may you be blessed as I am! Those living with their own #MyGlitch, may you be blessed seizure free to enjoy your families.

The outside of the house, for now....

need to finish the one side:)

But don't don't you worry, Santa wonderland is inside,

even in the bathrooms and of course

candy/treats laid out waiting for the boys arrival.

We are knocking this one out of the ballpark with a special #PurpleBatForEpilepsy too! So make sure you check that out!

if you haven't yet Popped out in Purple this month, this bat could just do the trick! (read in posting blog picture)

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Nov 22, 2022

We saw Dirty Dancing in Jax with the Olivolos. It was a blast! so glad you got your night out💜 I love your Christmas lights! Happy Thanksgiving. We love you!

Marissa DeVaul Parmer
Marissa DeVaul Parmer
Nov 23, 2022
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The show was exactly what I needed (LOVED IT) & a true friend to be able to take me out safely after seizures meant a lot. TY about the lights, now waiting for other side of house lights to arrive in mail. Brent ordered to match both sides. Happy Thanksgiving to all of you & give my big bro a Bday hug Friday!

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