First off can I just say didn't I move to FL for sunshine and warmth?? We have been under a freeze warning temps in the mid 20's, highs only 40's with high winds (I am pretty sure I am not in ND/MN/KY anymore) It sure isn't baseball or spring break weather!!
Miscellaneous Updates first
For those that have been asking about our MyGlitch gear, we apologize but for now the shop has been closed. We are working on getting fresh items, since it seems so many items seem to be out of stock. So if there are certain items you would like to see this time around, please let me know. Thank you to everyone that has purchased items to continue spreading epilepsy awareness by wearing MyGlitch gear.
For those of you that are just joining the MyGlitch family, welcome! Please feel free at anytime to send me messages and or place comments directly on a post. Also, to fully understand my(plus my family) epilepsy journey you will need to go back and read all the posts. As a reminder to everyone the MyGlitch FB Page no longer exists.
As a reminder to everyone spread the word on your SM sites to follow this blog at www.MyGlitch.org and sign up for email alerts when a new post is made.
For quick epilepsy facts daily, I encourage you to follow me on Twitter @RissEKUParmer or on Instagram at rissparmer, you may also send me messages on either of those SM sites and my email is email@example.com as well. I LOVE chatting with others about epilepsy or any topic you may have a question about. I have met so many new people that are battling just like I am, or they may have a family member/colleague etc. recently diagnosed and just want to learn more.
Alslo, the mention of live podcasts is on hold as we have to have certain logistics and permission from various entities. Stay tuned for those.
Mayo update from Monday, February 27th.(June 13 next apt)
Based on the previous post & the WADA testing, as some of you are aware surgery is not an option for me at this time. Dr. Feyissa did mention there are other options in the works via studies but with my GAD65 Auto-immune siezures it may not make it possible. My nocturnal seizures have increased and now occur on both the right and left temporal lobes. The good news is the day seizures have stablized for now, I go about anywhere from 4-8 days on to 4-8 days off. Having both drug-resistent aware and unaware bi-temporal lobe seizures and the continuing of the shrinking of the hippocampus.
Due to this we strengthened(recalibarated) my RNS implant on both sides but also around the hippocampus area. We also are in the process of increasing one of my meds for my 9pm dosage and over the next 4 weeks reducing another which I take 3x a day. My other meds we will not be making any change unfortanetly. (I am so tired of being on so many meds with side effects) WE will be watching for any changes in my personality, moods, eye-site, tremors, seizure activity, etc.
I am also still trying to be seen for Cognitive Behavavioral Therapy(CBT), but of course right now no local drs are taking new patients. This will help with the PNES seizures I have as a result of having seizures over so many years and the post-ichtal effect, which can last for hours or days. They mimic tru seizures happening, which exhausts my body.
We also spoke of how my blog is helping me but we need to change it up as well. While I love spreading epilepsy awareness and helping others, there is more to me, then just Epilepsy.
Blog format will be changing!
The dr said Brent and I have become such advocates/knowledgeable he feels I need to also help myself even more but also recognize what am I doing to help myself feel better physically and mentally, not just Mayo updates.(this in return will help others by telling what I am doing) Also, there are so MANY people that are in my life that I would LOVE to recognize them, as they may not be aware of it but they help me get through the ups and downs.
My goal will be to have entries on Mondays, Wednesdays and Fridays with various themes attached to them........so make sure you check back this WEDNESDAY to see what those themes are:) I Hope you enjoy them!
Of course there might be weeks where I amy not be able to do do this due to rough seizures, but I will do my best to at least say something & other days outside of those designated days where I might just need to share with you all.
Lastly, can I just say I LOVED getting to see my young men with those hugs over spring break even if it was short. I am such a PROUD MAMA!
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