Mayo Update Part 2: Pain & Mental Well-Being

Now remember you need to read Monday's blog before you read this one

When it comes to having uncontrolled epilepsy when on medications as well as an implanted RNS it becomes complicated. I can even say my case has been shared and studied at conferences, not something I truly want to be known for. My case also is very complicated due to my auto-immune GAD65, and other health diagnosis.

As you read on Monday we are going to focus on different ways to help me with daily pain and learning to redirect my brain. I already do many things which we thought would be enough. Such as daily meditation, exercise (various types), TV off by 10am, and I have music playing while I am doing things throughout the house, on patio relaxing and or pulling weeds, a set daily rest time where all is turned off (that includes my phone), blog on certain days, talk with family/friends and chat with others living with epilepsy etc. Of course I need to try and listen to my body if I need to just lay down for the day until Brent gets home. I am not always the best at listening to my brain or body, what can I say I come by it honestly.

Part 2 Mayo next steps to improve pain and mental well-being at Mayo's PRC

Considering we had a six hour drive home, there was much to comprehend after my Mayo Visit. Plenty of time to help my brain decompress and think next steps.

I am very blessed with a supportive and understanding husband, and of course he had some reminders for me and suggestions. First he reminded me I need to not be so hard on myself for the family, as I need to focus on myself in order to help the family. Brent said as I said at your appointment, you/we have had a lot of changes over the past few years and basically have become a prisoner to your home, unless someone can be with you to do something outside the home. I know for him this is also hard on. On top of this you have daily seizures, along with PNES and Fibromyalgia chronic pain.

Some things I have changed right after my visit:

Every morning I have to record how my night went in my seizure log, and my vitals that morning. So when I am doing this I am also writing down something positive about myself. I can see this then throughout the day.

I have printed coloring pages which have positive quotes on them. While I am coloring these positive quotes are being said to my brain over and over again. It also assists with my tremors I have in my hands, by having to stay within the lines and makes my brain focus.

Lastly; I have adjusted the time of my rest time due to when my seizure activity was happening during the day to see if changing the time it throws off the brain.

Now remember I still am doing meditation, exercise, listening to music etc.

Sample coloring quotes, I guess I am now creating the fridge artwork for us:)

Mayo Clinic pain rehabilitation center is the next step

This has always been on the table but with all I already did on my own and worked in the health profession before we held off on it, and in my eyes there was so much going on which I didn't want to miss out with the family.

I worked FT until February 2019, Dash passed away June 2019, RNS battery changed December 2019, January 2020 we moved, COVID, hurricane hits, boys last years in HS, became empty nesters in fall 2022, time with Brent and visiting boys at college having special events, Broc's 19th, Brent's 50th, move boys back in, our 20th anniversary, Bryce's 21st. You name it and I didn't want to miss out. I felt bad for already missing out on things on bad seizure days.

As you can see in my own mind it wasn't top priority. The key factor it is a 3 week program outpatient at Mayo Clinic. I don't think I have ever been away from Brent for that long even when he coached college track. I am still adjusting being away from my boys after all:)

After this last visit we have realized my Fibro pain along with PNES could be direct factors of why I am having more seizures and in constant pain. So if I can figure out how to potentially control those, I might have less seizures. Well at least back to every 3-5 days on and 3-5 days off, anything better vs now.

I will be staying with my folks, since it is outpatient. Hope they are ready to have their house back with an older child needing help. Sorry it isn't your grandkids:) Love you both for all you do!

I will have an initial consultation on November 17th 7:30am-5pm meeting with various doctors, nurses, physical and occupational therapists, psychologist and during these sessions having tests performed on me. Based on these findings a baseline setting for me and individualized program will be designed.

I will then be with a group of 15 people daily 7:30am-5pm Monday through Friday until December 8th. We will be participating in physical therapy, occupational therapy, cognitive behavioral therapy, case management which will help with daily pain/stress. On every Friday a family member comes for an hour to meet with the doctor to explain what we learned that week and what their roles will be based on what we were taught. Then we get to eat lunch and spend an extra hour with a family member. That is what will keep me motivated daily! Brent, may not know what hits him when he comes to visit me.

As Brent reminded me again, I need to focus on me, so I can be that best wife, mom, daughter I want to be.

Ironically this is during Epilepsy Awareness Month, stay tuned for more information! Needless to say I will have plenty of Glitch Gear or Purple to wear while at Mayo.

Checkout the Glitch Shop starting November 1st to

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