old (2007), Uncategorized

friday the 13th, indeed

[Note: Much of this is duplicating a post I made to the ChiHipFam listserv, so my apologies if it’s redundant. It’s just too much work typing out twice… but there is some new information at the end!]

This morning, I went to where I thought my grandma was interred, and it was completely the wrong place. I drove around the area for a while to see if I could trigger memories of having driven there before, but other remembering a few vague things, it was of no use. I’m going to call my brother and see if he can surreptitiously ask my mom for the information… but I suppose today just wasn’t the day. It was quite traumatic, and I felt like a fool, but it is what it is.

On a more depressing note, I’m back to the beginning with my health issues. After waiting five weeks to see a neurologist (after finding a champion for my cause in the neuropsychologist who adminstered nine hours’ of tests to me in January) and only seeing the doctor a full two hours after my appointment time, every single one of my symptoms was scoffed at. Despite the neurospsychologist explicitly stating in his report that I needed an extended ambulatory EEG (and NOT a sleep/wake EEG) plus a detailed work-up to rule out auto-immune disorders and MS, all that I’m scheduled for is a sleep/wake EEG on Apr 26 and the neurologist doesn’t even want to see me until 2-4 weeks AFTER that. [Mind you, I won’t have health insurance after Aug 20 unless I’m willing to pay about $250 a month to continue on the UIC plan…. and given my already unbearable financial burden, I can’t see how THAT is possible.]

And so in a situation where I’ve gotten to the point where I can’t drive more than 20 minutes because the fatigue will hit me so suddenly and powerfully out of nowhere, I have episodes of numbness and motor difficulties, I have gaps in my memory ( e.g., getting out of the shower and never having remembered starting the water or getting in), where I am in danger of doing super-poorly in my classes because I cannot concentrate or stay awake long enough to focus on the material, I have to take naps every single day in order just to function, and I can’t even walk down the stairs without falling down unless I am literally watching my feet touch each step, this is all supposed to be part of “getting older” or it’s all in my head. [The doctor said, “maybe you’re just not good at school anymore.” Uh, fuck you, Mr. Neurologist…. 4.0 GPA for my first MA, a 99th %ile on the GREs, and an IQ in the PG range, and all of a sudden I’m just “not good at school anymore”?]

What on Earth do people do when they are screaming to be heard about their medical problems and no one will listen? The neuropsychologist I met with in January told me he would be my advocate for me if I ran into problems, and I’m definitely sending him an e-mail after I type out this one… but what else? This is now FOUR YEARS of complaining about these issues without almost anyone listening. And after being blown off before, and finding out that all along I had a brain tumor (and that the motor difficulties I have now could have been prevented if someone had just taken me seriously then and the tumor had been removed BEFORE it damaged my primary motor cortex significantly) I am completely and utterfly fed up with Western medicine. I want someone to take me seriously, damnit. And today, of all days, I needed that.

Checked my work e-mail, and things had completely turned upside down since this morning! The tech guy who’s our saviour is leaving, along with my boss’ boss, AND one of the city editor positions is being subsumed by another city editor as of today. It wasn’t long before my managing editor was calling everyone to reassure us that we’re all going to still have jobs come fall. That’s ALL I would’ve needed today, for me to find out I was losing that job. It would have almost been as bad as when I was in the hospital two days after 9/11 with hyperemesis gravidarum (i.e., really fucking bad morning sickness) and on disability from my newspaper gig when my editor showed up in my hospital room to tell me I’d been laid off (but, hey!, I’d get to stick it out until 9/30 and get two months’ severance!).

Yet to be determined. Let’s hope this isn’t a Wiley Coyote cartoon and there will be no anvils falling on my head. Or, more likely, a wrecking ball comes through my window ala Stranger Than Fiction.