**Disclosure on and off day, so hopefully this makes sense**
Winning with #MyGlitch space & exercise
I am very blessed with my husband making my special #Glitch space at home to provide the extra motivation I need not only to reach out to others dealing with their own or family member diagnosed with #MyGlitch, but also help my own mental health by blogging. Everyday I see it filled with pics of family and the lights surrounding the purple with boxes that speak to me: #Relentless, #Fierce, #Strong, #Determined, and #Dedicated.
Each time I also come in here to interrogate my RNS data on my head to transfer to my #Mayo Team (about every 3 hours), so I am also reminded my brain also needs the exercise or meditation daily, even if like today my body was not a good feeling day....I managed to do something. After all if I didn't I wouldn't be following those words above, he says describes me through our family journey with #MyGlitch.
Brent had some extra stand up pictures that arrived, added to #MyGllitch space and a special friend here I met here via our young men.
(Rhonda), make the beautiful board you see as well below.
So more special items shining back at me, reminding me I can do this.
Mayo Report, I was having a feeling #MyGlitch was not going well but, my gut was feeling better because I added exercise and eating more healthy, and of course Brent taking me to watch the beautiful sunset at the beach to relax better (adjusting to empty nester phase).......so it had to be better RIGHT?
As always when we walk into my appointments I am greeted by a smile from my very caring Mayo dr, along with my RNS Engineer. He always says so Marissa I want to hear from you and then Brent how you are feeling and then what he observes first. Unfortunately; I explained to him I have felt "off" but I cannnot fully explain it in words. I said It has been about at least a month now, and I feel like experiancing things outside of me (I know that sounds wierd), but it is the truth. I also went onto to say I am proud of myself that I have began exercising whicj he was so happy I had, since it used to be a large part of our family lifestyle. I also explained I have had a terrible time with my site (medication side effects, so we did a minor adjustment there and see) I started to get a bit emotional and couldn't finish so Brent, began to talk. He explained how I at times I began speaking in the middle of a sentance, repeated things, forgot things I was doing, even fixed an entire dinner without remmebing it. He explained how my chest pains would come on, and i couldn't explain why or always be understanding when Brent spoke to me or forget wgat I was doing. He would try to make me use my words to start a sentance over, but I would just, get too frustrated. He also thought the adjustment of the boys now both being gone was adding to #MyGlitches possibly, but at times he would come home from work and ask me to go do something but I would say I cannot do it, my body just feels it can't. (basically jist of it)
Oh Marissa, Marissa placing his hands on my knees and he says "I so wish we had better news but what you are feeling is correct but yet unexplainable. Let us show you some data we are seeing from your RNS on the computer first. You are still having daily seizures roughly 4 days in a row and then 3 days off, mainly on the left side temproal lobe or near my hippocampus(which is shrinking), but the good news is the right side is seeming stay at 90% controlled. He said but on the days off it may also feel like seizures or still feel, off as you call it because your body is recoevring from those 4 days straight of seizures. Let's just say your case is 1 in a Million (Brent chimes in don't I know it, of course we all get a giggle out of that). The RNS Engineer and I have had round tables with various nuerologists/nuerosuereons/other RNS engineers within the Mayo system and outside studies read written by the 1000's and NOT ONE case is uncontrolled based on everything we have done the same with you."
Images Brent takes, shows them explaining what is happening with my brain waves, the wand I am holding up to my head, is once again increasing my algorithm but starting on the left vs the right as it goes off. Like he said at this point it is a guessing game.
He went onto to say we are at the stage I said I NEVER wanted to be at, and that is to consider a type of potential surgery. There are 3 types, but that is too difficult for me to explain on here. BEFORE ANY of those options are even decided by Brent and I he talked to us about what is called "WADA TESTING". Instead of me trying to explain this testing, where you place half your brain asleep, and then switch to the other side asleep for testing etc.
Please click on the link from the Epilepsy Foundation to understand: https://www.epilepsy.com/treatment/surgery/tests-surgery/wada-test
Based on the results of this "WADA TESTING", we would have a BIG decision to make. Do we go on status quo and live as we are now or take a chance with one of the surgeries to possibly have our family dream of #MyGlitch controlled more than it is now or at least potentially fully controlled like my right side with at least 90%. AGAIN NO GUARANTEE ANY OF THE SURGERY OPTIONS WORK.
As I am sitting here getting emotional and mad all at once(cause I can't explain it anymore). Yet, I know so many others have health issues much worse than mine......at times I feel guilty to even feel this way.
I only ask you to also keep his 15 month old son in your prayers. as a neurologist obviously when you hear your baby is born with certain things it is hard to not think like a dr. He was so delighted to tell us he was walking, and bringing books to his wife and him with hugs (was never supposed to walk), but he still has not spoken, but he smiles at them showing his love that way. As you can imagine when you are with a doctor for years on end, you become like family, and we care as much for his as he has for us. He said our relationship inspires him, and our young men inspires what he can only hope his son will achieve one day.
Thanks for this update. I am trusting your doctors and trusting your family to make the decisions best for you. Love you all so much💜💜💜💜💜