The Olympics of Every Day

Another week of being alive! Huzzah!

That opening makes it sound like this week’s blog post is going to be exploding with good news and joy.

I’ll do my best. Lately, my neurological realities have been on my mind and I’m trying to feel really grateful for the time I have.

That’s not meant to sound gloomy or inappropriately hospice-y. Rather, it’s how I’d want to live and feel even if I didn’t have epilepsy or bad-news-genetics.

After all, 1 out of every 5 epileptics will die in a seizure.

And there’s no treatment or cure for ALS or FTD.

And I’ve been told I will have both.

Accordingly, this new “LIFE IS SHORT! MAKE IT MATTER!” mantra has caused me to search for a new job and listen to my body a bit more.

Consequently, my epileptic brain recently decided it wanted one of its sleep marathons.

I realize plenty of people would love to take off work and sleep for a couple days. But, for me, my brain needs it. I can’t quite function without, once in a while, getting a lot more sleep than I’d normally need.

During this sleep, my brain kicks into hyper mode and dreams so hard I feel like I’ve been dropped into other lives.

Weeks pass in these dreams.

It’s like my brain has to get these lives out of its system in order to again function in this life.

Therefore, I slept a LOT and am feeling better.

Making an Effort to Beat the Odds

I’ve got my epilepsy under “control” for now.

But… tackling ALS or FTD is a bit more rough as there is no treatment yet. So I bit the bullet and tried to make an appointment with my specialist neurologist.

I’ve been experiencing one potential “symptom” in the past year. Specifically, when I’m laying down on the couch, relaxed and usually watching television, it occasionally feels as if my feet both seem to be experiencing a seizure.

Since I’m epileptic, I intimately know how “having a seizure” feels. My feet are no longer under my conscious control and seem to be contorting on their own in an unnatural way.

But, in contrast with having a grand mal/tonic-clonic seizure, I’m aware and conscious during this “feet possession”.

This is extremely unsettling, painful and not okay. I told my neurologist about this happening and she said it sounded like something I should tell my other neurologist… the specialist neurologist.

Okay…

Back in January 2021, the specialist neurologist told me to call in February 2022 to make a follow-up appointment with him in May 2022…

and I did but he is completely booked until December 26, 2022.

Crazy but I just took down our Christmas tree this morning so….

I guess this specialist neurologist is popular. Of course, he is one of the neurological researchers who is allegedly on the forefront of finding a treatment or cure for ALS.

This is why my regular neurologist wanted me to “get on his radar” after my neurological genetic tests came back with the news that I was predisposed to get ALS or FTD like my mom.

Because it t wasn’t a matter of whether I’d get either… it’s a matter of when.

My aunt told me the same thing about my chances of getting cancer.

But I didn’t do the genetic testing for cancer to verify my doom because I could only handle one doom at a time.

SO I’ll just plan to see my specialist neurologist for Christmas then and tell him… “I’m not dead yet. So have you found a cure yet?”

Making an Effort to Pay the Bills

My job search isn’t going super well but it’s going better than my previous search.

I did not get the job I last posted about but I felt okay with the message from the CEO:

I wasn’t feeling too certain about that position or the company but I do know that it felt great to get the attention of its CEO for two days of interviewing.

In any case, don’t count your eggs before they’re hatched

but – either way – life moves forward! I have a few other job applications in play for positions I’m much more interested in.

Perseverance.

But What About the Dog?

Finally, as an update on June Carter Cash, I recently acquired a photo of her with her brother, Johnny Cash, and… maybe she will experience a growth spurt… ?

Beyond that, June is doing super well. She now follows us around with encouragement and exhibits strong love and affection.

She’s even started to play a little… well, she likes to chew on my fingers and especially on my rings.

But I’m not sure if that’s “play” or teething.

In any case, she was super happy I was sick this week.

While not being food-motivated in the least, she has also started to eat different kinds of food. After her big visit to Pet Supplies Plus, she gobbled down the treats we bought her.

She also now wags her tail more and also seems to like hats.

Week Three has been wonderful for June Carter Cash and we’ll see what her first visit to her vet brings tonight.

I bet she’ll be adored.

Hope everyone is staying safe and warm!

🖤