**Disclosure remember I don't proof read, to show that sometimes my mind may think in reverse or speak differently vs how it comes out in writing, to show others who don't have Epilepsy what a person feels or their family's deal with daily***
My last Mayo appointment was on March 15-18th, yet you're probably curious why on March 26th I didn't blog about my Mayo visit. First I felt the legislation passing lawful in School Seizure Procedures was very important to pass along for awareness to all ASAP. (especially since just recently a student at my son's school had an apparent seizure and the teacher and nurse had no idea what to do. Fortunately; someone we know recognized it and helped a fellow student to safety) Secondly; I honestly needed to focus on my own mental health, and also focus on my family time due to in my eyes the shocking truth the Mayo Doc said. (even though I always knew down deep it was a possibility)
Quick visit summary:
1) I was excited bout this visit to go for a 1 day check-up of my progress, get off at least 1 med, and have my RNS inplant algorythm adjusted.....didn't happen :(
2) I had planned on back home quickly because both my young men were on spring break the same time and mama had some fun plans (well at least I was excited for mama & her boys time together.....since soon Brent & I will be empty nesters come fall)
3) My RNS data showed my nocturnal Glitches (these types as he reminded are higher chance of SUDEP cases) had increased and overal a pattern of 4 days having seizure activity to 3-4 days off...with the RNS along with 5 medications not stopping them completely (good note on this they adjusted the RNS strength to be higher and follow this pattern, & we shll see) He said due to the pattern, could be why I was logging more because my body was not haing time to recover. 3 PHASES of a seizure remember are (The aura(sign of it coming on), the actual seizure(Ictal phase) & ending(Postictal). Some post phases can last mroe than 1 day...so while my brain was recovering...my actual body didnt have time to before the next set of seizures ocurred
4) Due to what was found I was placed on a 72 hour outpatient EEG, an evaluation of my Cognitive memory skills/stuttering more etc. along with my reoccurring PNES seizures due to anxiety of increased #MyGlitches and feeling of burden in my own mind to my family (Thank you mom & dad while I was staying with you, you always do your best to try yo keep my spirits up....knowing I was missing my men)
5) Once home had a month long Heart Halter monitor along with other heart tests ro see if #MyGlitches had increased due to something with my heart or #MyGlitches were damaging my heart (Check-up prayers needed on August 16th please for these tests)
NEXT VISIT IS JUNE 1ST TO SEE HOW THE ABOVE HAS CHANGED, I WILL UPDATE SOONER ON THIS ONE...PROMISE. I ASK FOR PRAYERS PLEASE.
Focusing on my Mental Health & enjoying my family FIRST UPDATE:
To start with I have to admit I started in a funk and was having a hard time coming out of it, based on all the above. I of course didn't want to admit that to anyone, especially my husband even though I am overly blessed with someone that loves and cares for me unconditionally I knew he had a lot on his plate. (but he of course saw straight through my fake smile)
1) First I started listening to inspirational/motivational videos daily prior to by dr required "brain rest time in bed" Roughly I am supposed to turn off all electronics and not speak to anyone from anywhere from 12:30-3pmCST Once the viceo was completed, I would turn it off or send it to my men if I felt it applied to them as well, and rested.
2) I contintued with my online church back to where the my boys were baptized every Sunday, for me time..plus just seeing that location provides me peace thinking of them as babies again when they needed mom more
3) I didn't care how many seizures i might have had that day, I was trying to teach my mind to not let it effect me emotionally and miss a baseball game due to one (afterall this was his senior season....plus I am known to be a bit stubborn)
4) I tried to not let the stress of my 1st year college young man being placed in COVID isolation right after spring break, causing him stress over his classload backup.(he couldn't understand how he had gotten COVID when it felt like the flu and hwe was just tired plus vaccainated and had flu shot.) He is a bit of a worrier like me and also expects perfection too often in fear of letting others down. Also, when it came time for finals and his stress level was high i let him just vent and i tried so hard not to be too overly mother/smothering him. I just reminded him how proud we are of him and obtaining an Honors Program degree from Embry-Riddle....is very impressive and recruiters don't see my goodness you got a B on a test. (proud to say he of course ended up making Dean's list both semesters)
5) Listen to my own body more for aura signs or if my husband noticed stuttering, changes in my actions or my eyes...I would try to be a better listener to him and go sit down and not demand to make dinner, because in my eyes that it is my job.
6) Be in the moment with my family in everything and just enjoy it, no matter if it was a breakthrough #MyGlitch day, a day where I cried for who knows what (Menopause issues/seizures or feeling guilt)
So as you can see much has been going on with myself personally that I needed a break from my blog, to just ENJOY time with my men. Yet, my wonderful hubby reminded me the blog was also an outlet for me and I LOVE helping others who live with various #MyGlitches of their own or those that care for those on a daily basis. In that case, he is right, and I needed this again and refocus my mental health also through #MyGlitch Blog.
Bryce's official recognition for Dean's List.
So prude he took on the challenge of being the
Honor's Program at Emory-Riddle in Aerospace Engineering,
joining a club all while adjusting to college life.
taking 2 summer online classes and will be a 2nd semester
sophomore this fall.
Already graduated due to being at state baseball during graduation, but still had to go back to take finals, so his "official" last day of Senior day HS. I am so proud he is a straight A Student ATHLETE, has received many awards but more importantly is a wonderful person who does anything for anyone as well as leader.
State Baseball enjoying watching Broc do what he loves, just loving the time with my men
Going to embrace #MyGlitch & advocate for others here on out!