Mea Culpas and News Updates, or, State of the Beth Part II

Everyday, I try to learn a new task, perform a new craft, improve a recipe, learn something new. Even something as odd as the mating cycle of ferrets, or as one Craigslist posting would have it, "Cat-snakes."

But today, I learned about one particular hangover of traumatic brain injuries, hereafter called TBIs.

They can cause you to be rather labile.

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 I am irritated, because I was handed a diagnosis, a death sentence (I've since decided to go with the conclusion that Dr. With A Terribly Offputting Name was terrifically wrong. And I celebrate this every moment, but especially every year!), medications that, across a wide scale from broad-spectrum to targeted, I ended up being allergic to. I was told that epilepsy meant I couldn't have a family. That no man would want me. When I was pregnant, I was told to abort, when I asked what I could do, because I didn't like the side effects of AEDs on a fetus. Dr. Offputting told me in no uncertain terms to abort. I refused. After reiterating his rather dark prognosis, and not giving me anything resembling proper medical care, I left shaken. Tonight, I learned about an interesting hangover to TBIs. Namely, inappropriate reactions. Tears or laughter (When not discussing TBIs, I tend to think snark is a wonderful way to handle things, and that there is no such thing as inappropriate laughter.) I was either not told about this, although telling me that I was bad, dirty, uncooperative, too emotional, and that any pain I was in was my brain and not my body, meaning that my kidney went undiagnosed for years... until, suddenly, it couldn't. I did everything to avoid this, went to doctors, support groups for conditions I didn't have. I became far more anxious. I lost everything because I didn't have proper resources. I became resentful and distrustful of doctors who hurt and insulted me, while I counted down the time until I'd finally just give up and quit.
I never did. I can't, I won't. But being told "Well, this is what happens after a TBI, and we are going to monitor more than your nutrient levels on AEDs" would have been fantastic.
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I spend a lot of time teaching on living with epilepsy. I fight that anxiety and depression are common. That talking about it, that fighting... is what is necessary. How to deal with life stuff, dating, going out in public, dealing with the cops. I never knew about inappropriate laughter, tears or anger, except in the confines of Parkison's Disease! (This really should have alerted me. Parkison's affecting the brain. Derp.) And while I was either not told about or slept through a discussion on this particular symptom... (I'm sort of betting on the former more than the latter.) I do vaguely recall a few commercials, that like most, I ignored.
And...while watching to actually catch up, I felt an urge to take a pee break. How could I ignore and not figure out that "Wait... that's... " I've called myself overly emotional, the TBI distilling certain small things and making them REALLY apparent. Oh, God, I've mimicked every crying Virgin Mary in existence. Thank God, it was in saline, not blood. That's just messy. I have a lot to learn. I also am having an inappropriate reaction to a well-meaning ad... because it's over the top, and sad people/ loud people put me on edge.

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Are you still here? Good news! I am 8 months free of tonic-clonic, aka grand mal seizures. I am two months free of smaller episodes, (I am estimating, but I think I can say 8 days shy of the calendar date is an allowable estimation.)
Last month, the 7 and 1 month point marked a 4 year point - if not the 1 year point I'm reaching now. I have now gone longer without a seizure than I have for the past 4 years. I still need to learn to "find" words- I tend to know what I want to say, and end up not being able to speak, or not being able to spit out the word at the end of my tongue. I always had some problems with speech before my injury, the distillation process means that when nervous, I can't hide them as well. I turn into a malfunctioning robot far more often than I'd like.

But I am better, day by day. I will close before I somehow end up singing a 90's TV show theme song. I think, rather than recriminations, party time is what the doctor ordered. :-D
*Ask your doctor if party time is right for you!

Its Name is Robert Paulsen, Its Name is Robert Paulsen

When you don't know what's going on with you, and you can feel your body attacking itself, and your emotions running wild, it's very easy to become anxious, to fear the shadows.

Finally, after so many exercises in frustration, in banging my head against brick walls at the neurologist's, and tests just going nowhere, I decided I'd draw a little road map. I knew I'd have to allow for pain and for my head to be grabbed, twisted and torqued each which way, but, in the penumbra days, when the pain isn't so bad, but I can point out the locations by touch, I made a model using a free service for a 3D realistic paper skull decoration. (I also almost ordered a skull coffee cup and still might, but that's just me being me.)

The first arrow at the left shows the pain creeping in. If you hold your left index finger up at your left eye, at an angle, you should be able to occlude your vision but still see a little, with a sort of "aura"... sort of like a partial lunar eclipse. I try to time my Imitrex injections before I see the eclipse, but it can happen pretty fast. Then, if you think storm cloud, the pain will move from the left temple, drifting over into the right. At about this time, I'll feel a bit like someone is having a rather festive party inside my brain, with fireworks, and Uncle Screwtape playing an extended drum solo,  while in the area where my spinal cord attaches to my brain, it's about the same as the temples.

There will be tests for MS and arteriosclerosis. The latter usually doesn't show up until you're in you're 60's, so I'm kind of letting it go. I refuse to consult good ol' Dr. Google. The doctors now think my symptoms, besides headaches, are part of a bigger puzzle, and are fitting in pieces. I have a spectral shadow to deal with. I am scared, yes. Very scared. So I named my shadow. Its name is Robert Paulsen. He looks like Meatloaf, he'll do anything for love, but he won't do that, that is just unspeakable! Now that the shadow has a name and a face, I'm not so frightened. It's how I beat my fright. I laugh at it.