About

As of August 6, 2017…

About pages are SO much pressure. I’ve changed this twice now, so third time’s a charm?

The quick and dirty is that I’m a midwesterner about to hit a quarter-life crisis living at home with my mom. I love horses and have from the age of 7 (maybe earlier, who knows). Two of the most influential of my riding instructors/mentors in my life died while I was under their tutelage, and now I kind of worry about cursing people.

Which is ironic considering I have an incurable neurological disorder – shouldn’t the cursing already be taken care of?

I drink books and reading like water, and believe well-tended learning and air are both essential to life. If I’m interested in a particular subject, I want to see it from as many angles and perspectives as possible – the merits and downfalls, from the point of view of someone I already know and someone I’ve never heard of.

I find sociology and personality typology endlessly fascinating, with incredible applications but mostly useless as ends to themselves. And my views on everything are pretty much always up for debate with further insight.

Oh, and I’m obsessed with image/portraying myself in a certain way (read: successful, having it together). Pretty much has been that way since I became a big sister (at age 2). On a positive note, it led to good grades, being super involved, some decent art work (tooting my own horn, check out the drawings page), getting into college (… and barely completing college)…

On the negative side, it probably didn’t help my stewing chronic illness, contributed to some major teenage depression, led to some serious burnout, and caused my current lack of identity unless tied to something I’m “good” at.

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2 thoughts on “About

  1. Hello, I ran across your article on the Mighty, the only one that had cataplexy in the title, lol. Just one. I was a bit bummed as Narcolepsy sucks but Cataplexy sucks bigger, at least in my life. Unfortunately, I have a host of other conditions one of them makes me have paradoxical reactions to meds, so the uppers for narcolepsy make me sleepy, go figure. So I’m an un-medicated narcoleptic and cateplexic mess.

    I liked your analogy of the spring and winter of cataplexy and I’m surprised to find someone else who has it last for hours because mine surely does. All the medical descriptions say it lasts second to minutes and I wonder what the heck is going on, why do I experience it for such a long time?

    I have two other odd things that don’t match with the typical cateplexic symptoms and would love your input. One is sometimes I will fall and have no awareness of what is around me nor a recollection of how I got on the floor, yet have the classic cateplexic symptoms. Like last night i felt it coming, I fell into my counter first and then walking back to my living room ended up on the floor, it was just me and the floor, everything around me wasn’t there, I was surprised when my husband came and picked me up as I had not returned to the living room. My voice was paralyzed, my mind was mush, and my body was a sack of potatoes. It took about an hour to come back to functioning.

    The other weird experience I had was I felt the episode coming on as I was typing on my phone i got sudden blurred vision and said something to myself out loud and I was slurring badly, I fell into the back door as I was outside and my husband again dragged me to bed. But my vision didn’t improve for ten days. My neurologist hospitilzed me checking for a mini stroke or high intracranial pressure which both turned out negative. Have you heard of this? A part of narcolepsy or cataplexy lasting that long?

    I was diagnosed the beginning of this year with Narcolepsy after a MSLT sleep study. But have had symptoms early in my 20s. I’m 32 now and it’s gotten ridiculously bad, most times i can ward off cateplexic attacks if I take a nap but if not I have them everyday or even after a nap. I can’t drive right now either as I fall asleep or some stupid narcoleptic thing happens. No one understands, this complex retarded condition.

    It’s just paradise riding in a scooter at the store and feeling drunk and acting drunk wrecking into shelves and having to be carried out by my husband, lol. Thanks for any insight!

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    • Samroby84,
      Thanks for commenting, first of all. (: Second, you’re right about the low mention of cataplexy – I might mention it in one of my other articles, but if you look up narcolepsy overall it’s a bit sparse! Possibly because we aren’t sure of it ourselves (I hear people all the time say, wait, THIS weird thing that happens is cataplexy?)
      Third, I’ll try to give you some insight, but this is with zero knowledge of your situation beyond what you’ve said and also, I’m obviously no expert. If you aren’t already, I can suggest several facebook groups that have people with far more knowledge than myself! That being said, extended cataplexy attacks are known as status cataplecticus (yes there’s a name!). It’s exceptionally crappy. From what I understand, you can also go back and forth between SC and “typical” cataplexy. For me, that would explain one particular incident where I was on the ground for over 4 hours… I wasn’t absolutely paralyzed the whole time, it was more like waves where I’d get my arms back/upper body for a few minutes, and then I’d be back laying down for another 30 minutes.

      I’ve also heard of someone (on one of the Facebook groups I referenced) who had SC/cataplexy to some degree for several days, so I imagine what you experienced with your eyesight could possibly be an extreme version of that? I also have not personally experienced or heard of losing awareness when entering cataplexy… though there were multiple times while I was in college that I could tell I was going to have a cataplexy attack and still be a 20 minute walk from my dorm. In some of those cases, I actually don’t know how I got back to my room. I can vaguely recall counting my steps, and I know which way I *would* have taken, so I could argue that I *did* know what I was doing, but it was probably more repetition and muscle memory.

      I was diagnosed about a year and a half ago, but I’d had mild symptoms since 2009, so I feel you there (even though it took about half the time for me to be diagnosed). I don’t know if this is helpful at all, but keep on fighting girl! And if you want any of those Facebook groups, just let me know :)

      Take care!

      Like

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