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Showing posts with label What Now? Epilepsy. Show all posts
Showing posts with label What Now? Epilepsy. Show all posts

Monday, October 6, 2014

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!

Monday, April 28, 2014

On Triggers, On Remedies, and All That Jazz

The first answer for many people when asked, "What are your triggers?"- when it comes to epilepsy, that is, is stress. While a full blown- episode might not develop, a tendency to do a blank-stared wander about (if I'm getting lost, I mean to do so purposely!)
-might develop. It's always funny- in fact, hilarious- later!
I guess I've learned this: my humor is odd and is very healthy!

Still going strong... No tonic-clonics for 12 weeks now. The minis can go... preferably somewhere in the deep south with a rather hot and arid climate!- and the "I can't brain" moments where every action is done like an automaton... I can look dear friends in the eye, have no freaking clue who they are, but do something like wave or smile because part of me says, "This is expected, act normal and no one will notice." It's a lie!


But I got myself together... and will pray for no repeats of that particular move... in the meantime, time for quiet, for comfort foods, for happy music.

I also enjoyed a wonderful and glorious performance by Cecile McLorin Salvant at Albright-Knox Art Gallery, and was delighted, stunned, and taken aback. And stress melted away. I can over- think another day! (Or, work on NOT doing so!)

With jazz, with scatting and a free, open, lyrics and flourishes, I can sit back and let myself get caught up... and no one worries if I'm enraptured, transfixed, or swaying. :-)

Note: at Saturday's concert, the ultimate line in "If This Isn't Love..." was, "if this isn't love... I'll kiss your ass!"

Thank you, to a dear friend for taking me, her children not liking jazz (You poor loves!) and 2 sets of people having to pass tickets on! I'll take it as a Godsend.

As for ass KICKING, it's my turn. I'm beating this, and sorting out! To... a state where I'm not worried about, "Oh, gosh, something's going wrong..."
Time for joy!
Cecile McLorin- Salvant: If This Isn't Love...