2020 has not been easy for anyone.
After all, even those investors and tech CEOs who made a shit ton of money in 2020 off the public health crisis like war profiteers couldn’t just roll down to their local to get a beer or bottle of Cristal without assuming some risk.
Tough times for us all.
Yet, I’m personally at my end.
Not just because this morning my husband and I were wakened at 6:45A.M. by a woman outside holding a screaming match with either no one or someone who wasn’t responding. Or because the neighborhood ice-cream truck guy is back to doing his rounds in December and now uses a “squeaky horn” to alert the children who won’t come outside to his presence.
We really need to move someday.
No, I’m at my temporary end with medical tests because 2020 has been batshit and by now I should have my own cage at the lab.
I know I’m at my end with something when I start making exaggerations.
2020 Recap ⚡️
I started 2020 with epilepsy, as I’ve started every year since I was 12.
However, this year first led me to a mentally unbalanced neurologist who required that I see him monthly and who had me do two EEGs in a few weeks’ time.
He ordered two because the results from the first EEG made him order an ambulatory 72-hour EEG.
He couldn’t say. He said he just saw things that “worried” him.
Since my cousin who was the closest thing I had to a brother
had suffered four bouts of brain cancer I asked the neurologist if brain cancer could be an explanation for his worry.
Yet, he couldn’t order a CT because COVID.
So I then had the hellish ambulatory EEG
and my neurologist’s office called me afterwards saying I had to get in there ASAP but couldn’t say why.
“Just as soon as you’re able.”
Thus, I assumed the worst.
So I made an appointment for the next day and the neurologist told me I was having seizures all the blessed time.
As a longtime epileptic, I feel I have a pretty good sense for when I’m experiencing a seizure so this news caught me by surprise.
Yet, the neurologist seemed super freaked out and said I was likely to “die soon in my sleep” because my brain was producing an insane amount of electricity which my body could not sustain.
My epileptic brain was apparently an overachiever.
In any case, my only course of action was switching to a new medication so I did.
I also wanted a second opinion and to get away from the least reassuring and most emotionally unbalanced neurologist I’d ever had so I also got a new neurologist.
After I did so, my old neurologist behaved poorly and all that was upsetting and a bit scary. Naturally, he also refused to share the results of the ambulatory EEG which had freaked him out with my new neurologist.
Therefore, while we waited for the unbalanced neurologist to share the results (a futile activity), my new neurologist ordered a bone density test as anti-seizure medications tend to erode bone.
And… my hip bones were doing fine. Yay.
And then my new neurologist also ordered a MRI because I hadn’t had one in awhile.
This 2020 MRI test subsequently showed that I’d had brain lesions since at least 2015 (the time of my last MRI) and this was also news to me because no one told me I definitely had brain lesions back in 2015 but the lesions had not grown since they were first recorded so…
this was good news.
So I was batting maybe 4-0 if I bought the good news about my brain lesions staying the same size and dismissed the “results” of the first ambulatory EEG because the old neurologist was unlicensed, arguably incompetent and definitely emotionally unbalanced.
And since my former unbalanced neurologist still had not shared the evidence for his epic claims that I was Dead Epileptic Walking,
my new neurologist had me go through a second ambulatory EEG.
If I can help it, I’m never going through another ambulatory EEG.
They are not any kind of fun.
But after my new neurologist got the results, she summarized her analysis of the second test’s data as being:
‘(My brain produced) “an unexpected amount of electricity”.’
Okay… hold up.
So she saw what the unbalanced neurologist had seen but was much more laid-back about it.
Essentially, my brain is apparently always, gently, electrocuting me.
But as long as it’s not REALLY electrocuting me (via tonic-clonic seizure), I’m cool with it.
Mostly because there is nothing to do about it and maybe it’s finally the answer to the question of
“What’s wrong with you?”
“I’m being electrocuted.”
Meanwhile, during all this neurological testing, I was doing an assortment of tests on the order of my GP and trying every kind of inhaler invented because I couldn’t breathe and kept hacking up hard brown.
I kept a photo album of this phenomena.
I won’t show you.
Since the tests and the treatments didn’t explain/help, eventually my GP just stopped ordering tests (we are in the middle of a global pandemic) and I assumed I was allergic to the new anti-seizure medication prescribed by the unbalanced neurologist.
Therefore, I switched back to my old medication which had been working just fine until I moved back to Milwaukee and started doing ambulatory EEGs.
But I was not done with the neurological testing! No, in 2020, they just keep coming.
So the next test I did was neurological genetic counseling on the request of my new neurologist.
That turned out to be the most traumatizing of the tests.
This is because I decided to get the test for whether or not I had the chromosome repeat which signified I was likely to get ALS and/or FTD.
And I did. In fact, the signifier chromosome repeated over a hundred times.
And that is where I hit my temporary wall.
No more tests.
And this isn’t like I’m giving up and dramatically CAN’T TAKE ANY MORE (faint).
No, I’m done because there is no cure or treatment for brain lesions or ALS or FTD and there is also no cure for epilepsy.
And I’m not experiencing seizures (that I know about) so that is awesome.
I’m grateful to not be experiencing seizures this year.
When my cousin Nicky was at his end during his fourth bout of brain cancer, he called me and told me that the worst part of all the cancer treatments and the pain and suffering and weakness and awfulness were the seizures he was suddenly experiencing.
He had never had them before.
And he told me how sorry he was… he, the dying boy… because he never felt bad enough about my having epilepsy.
His voice was so emotional and… I didn’t realize he had been underestimating how much epilepsy sucks but it was nothing for him to be worrying about right then.
I was just so so so sorry he was having seizures in the middle of all the rest of it.
It was not fair but very little is.
Yet, my Nicky gave me some insight.
Seizures really are the worst.
So I am super grateful to not be having them this year.
However, while I still haven’t seen my neurologist since the very first time we met last spring… last week I suddenly had a referral from my neurologist to do…
So I called the hospital and said I was supposed to schedule something and the helpful scheduler told me that I was to set up an interview and then also schedule some kind of testing which would take an entire day.
She also asked, “Are you having any issues with concentration?”
And I discovered that the doctor I’m to see is a psychologist. So I asked, “Is this some kind of memory testing?”
And the scheduler said that it was.
“It must be a follow-up to this genetic testing I did.”
“That must be it,” the scheduler replied.
Therefore, I scheduled the two appointments for January 2021 but then realized…
I don’t want to do either.
And cancelled them both.
Besides, if I don’t feel I’m having any cognitive issues, and I’m not experiencing seizures, then who cares what someone else in the neurology field thinks?
After all, if they somehow determined, after a day and a half of testing, that I am exhibiting symptoms of ALS or FTD, there is nothing that could then be done.
And then I’d have that useless information to carry around with me because
again, there is no cure or treatment for ALS or FTD.
It kind of feels as if they forgot they’re dealing with a human being.
I decree that, in 2021, I aim to not do any kind of neurological testing because, at the end of 2020, after all this testing, all I know for a fact is that
I still have epilepsy.
And that’s pretty much it.
It’s how I started this terrible year and it’s how I will end this year.
Choosing to focus on the present rather than panicking about the potential near future or far future or… no future at all is my mantra for 2021.
Maybe it’s a little early for New Year’s Resolutions but positive thinking is looking forward to being out of this year.
2021 may not be any better, but it at least won’t be 2020.
And I vow that it won’t have me untangling electrodes or gritting my teeth in a big loud machine.
Happy Last Month in 2020, everyone.
Those of us who have survived this terrible year are still here, despite all odds.
And that’s wonderful news. 🖤
And music is medicine.
6 thoughts on “All Lab Rats Go To Heaven: An Epileptic Puts Her Foot Down”
Congratulations on accepting the clear and seemingly reasonable diagnosis of Epilepsy as “what is wrong,” and really if you want, you can pretty much blame it or its meds on any issues that concern you or that you question.
Therefore I am very glad you’re being in the present with Reality and not chasing answers to questions you don’t (no one does) need to ask now.
I love your sanity.
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Aw. Thank you so much for your support and the kind words! Haha being extra electrocuted could be why I “spaz out” sometimes (the derogatory phrase does apply to me here). 😂
Hugs to you! Oh! Are you doing #pitmad tomorrow??? 💙💙💙💙💙
I’m going to find out what it is as I’m curious but beyond that, can’t say. Haven’t read you yet today. 🙂
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🖤You have both made my day. Thanks for the comments and feedback! 🥰
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Love all the emojis. 😘😘😘😘