Thursday, June 11, 2020

Happy First Anniversary Alex and Marley!

Happy Anniversary Alex and Marley!!!*

I apologize for neglecting to post about your lovely and special day last year. However, it was so much fun to look through pictures of that day! 

Cousins bonding over Pokemon (I think) as we waited for pictures to begin. 

There was music so Jane twirled and danced.

After pictures, the ceremony began.

 I was doing fine until I saw Alex tearing up... so many happy tears!

It was an absolutely perfect day. The spirit was strong as our family grew and two lives united. My "little" brother Bug found a wonderful woman to share his eternity with and I couldn't be happier for them. Marley is a gem and she and Alex are a really special couple. I love them both so much!

I feel incredibly blessed for this family of mine! 

It just keeps getting bigger and I love it!

*Today isn't their actual one year anniversary. It is Monday, June 15th. However, I'm spending that day having a same-day surgery to replace my VNS battery, but I didn't want to miss celebrating them!

Thursday, September 19, 2019

Seizure Freedom!

For the last few years my seizure frequency has been declining. Considering that when they started I was having an average of 16 strong ones a day, that is pretty awesome.

On March 1st I reached a huge milestone...


It was also DOUBLE my previous record!

Shortly after that I had one minor seizure (ugh!) but if you don't include that, I have now gone...

6 1/2 MONTHS!!!

The freedom I feel is wonderful. Free from fear of when the next one will happen. Will I be on my bike, holding a knife, in a store, will it be a strong one, etc, etc, etc? The sensation I would get before each one was exactly like my arm muscle was a little fatigued. I really cannot tell the difference between the two sensations. 

I remember having a panic attack rock climbing for the first time post the beginning of the seizures. My arms got a bit fatigued and I was frantically trying to tell Keith to lower me down. I was terrified of having a seizure dangling from a rope against a hard climbing wall. Sadly, it was a long time before I dared go climbing again. It was just too much. Once I realized that I was going a long time without a seizure however, I focused on working my arm and grip muscles so that they were fatigued almost every day. For about the first month I had to suppress the fear that for 6 years I had had every time my arm muscle felt fatigued; the fear that a seizure was beginning. I wanted to retrain my brain to no longer associate that sensation with seizures. Every time I felt it for almost two months I would repeat in my mind I would repeat to myself that it was not a seizure, just tired muscles. "This is not a seizure Katie, just tired muscles." And it worked. I can't guarantee that I have had my last seizure ever, but I love living free of them now.

Oh, and I can drive now!!! :) OH YEAH!!!