September 2007


“Ain’t it great to be ___-__?”

I’m not sure where some of these songs come from. This one certainly wasn’t prominent in my primary school years (and I think I always preferred being “weird,” over “crazy.”

I do a nice job getting down verbally with the youngsters, though. I caught a glimpse of a story-in-progress by nephew D today. It included something about a fre(a)ky dream that his main character had had. The part I read indicated an apparent seasonal theme. I have a feeling I may need to wait for the published version to gain access to the whole story.

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Totally unrelated:
I found out a bit too late about Ladysmith Black Mambazo’s visit to DPAC (DeBartolo Performing Arts Center) to arrange my attendance for Thursday’s performance. It used to be rare, indeed, that I’d miss an opportunity so unique. I think I did derive some vicarious benefit from the group’s presence in the local area.

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If you elicit pain, then it’s less likely a person will be able to express what is desired, other than the alleviation of discomfort. So don’t keep yelling, “What do you want?!” at them when they’re still reeling.

The intermittent shocks, burns, and stabs that constitued past neuropathic pain have resurfaced. The joke in the office was that I could go home and just pop some pain meds, while I’m thinking to myself how none of those work anymore.

It should only take 6 months for this adhesive to work out of my hair. That will be my fault, of course.

I should be grateful for any modicum of stability being jeopardized, I suppose.

Alright, I’ve vented. Moving on. Time for beneficial distractions!

I was diagnosed with NF2 in 1990, based on an MRI that was actually informative, painless, and useful for treatment thereafter.

A lot has gone on since then, but my surgeons have always been conservative about tests I was put through.

Since the most recent crisis and mediocre MRI results, my quality of life was improving, naturally, with healing time and self-initiated routines. Why am I the only one who acknowledges what’s helpful and harmful to me, after all these years and experience, and the mounds of MRI, clinical, and surgical reports?!

I am generally level-headed, and put things into perspective well, even tend to be a people-pleaser the majority of the time, but the buck stops when something being done to me cuts to nerve roots, and spurs inflammation, and drives me to instant exhaustion and a plethora of emotions. With no empathic understanding to be found from those in my midst. I’m not faulting anyone for lack of understanding, but I am saddened by it.

Respect. Sock me with the right stuff, please.

Why don’t people listen to me from the start? Aargh. My nerves have been disturbed, and I’m more disgusted than ever about the act of measuring something changing what’s being measured.

I was hoping to get the thing done with to appease the people. Halfway through, I’m realizing the torturous nature of it. Potential benefit-to-cost ratio went towards all cost, and possibly lasting longer than I care.

I’ll try to minimize the psychological toll, but this sucks right now.

My poor head…

The unit was not fully functional, so I’m not hooked-up yet. Next mid-week.

Not a total waste: I made a small shuffle forward on the communication access front — long, ongoing saga, but at least I’ve recovered my tactful cajones while in the midst of the situation. Major situational management efforts were required on my part, which is somewhat deplorable considering it’s the year 2007, and we’re well into the whole “patient’s/consumer’s rights” movement, not to mention the passage of the ADA over 25 years ago. I did succeed in negotiating a resolution. I’m a bit worn down at the moment to do greater consciousness-raising about specifics and generalities via blog. But it’s good to have the experiential breakthrough that gets beyond mere identification of the problem and contributing factors. Why merely complain, when one can work for change? I do need to treat this in a more systematic way, though. Naysayers close to me have dampened my former skills with these kind of exchanges, so I’m a bit rusty. (That is the deleterious effect of loss of autonomy that has biological origins. I do hope minds open more… I don’t have enough eyes to be a fly on the wall when it comes to discussions of my body, only picking up a random word here and there, while missing most of the context and counterpoints. That is, the keys to MEANING!)

I started this while waiting, before the appointment:
“My local neurologist moved his office to a new (recently built) office complex. You would think that in the year 2007, the new place would be more accessible than the old. You would be wrong. All 5+ patients that are here today, in the 20 minutes I’ve been in the waiting room, have obvious mobility limitations. Yet the doors are bulky, heavy, and too narrow for the two wheelchair and scooter users to pass through without appearing to be running through the American Gladiator gauntlet course. The cane users fared marginally better. It’s a double-door set-up, too, so just cumbersome, and without an automatic/motor-assisted option.”

C made his first solo omelet in my presence!

It turned out perfectly, and he still let his bro have it. (He is advanced beyond his mother, at that age, as far as sibling goodwill goes. At least as far as I can recall, from the little sis perspective, ahem.)

I didn’t even notice he was cooking until the smell of the nearly finished product wafted from the kitchen. Awesome!

They grow so fast!

So when will we transport smells via the internets? (The Sunday paper’s Baby Blues comic strip is relevant here, in a more general way, perhaps.)

without a haircut.

I think that’s a record for my post-ponytail days of youth — although only in the sense of not really needing a chop, not in the sense of just not getting around to it. (My first salon haircut was in high school, a bit after my godmother had clipped my waist-length hair to just below my shoulders, before my first brain surgery. It seems like my hair’s always grown back faster after surgical head shavings prior to the most recent one.)

The more contemporary homegrown cut is something that’s more spontaneous than definitively planned. Good thing.

I looked up a bit on the ambulatory EEG. They place an array of electrodes that hooks into a battery unit for recording (and advise folks not to shower while they’re undergoing the monitoring)… And there were message board posts about the glue sticking around afterwards even moreso than usual. There was also a mention of the use of a cap for children for greater comfort (and because, you know, children are precious, with sensitive skulls). I think that’s what should be used for me, and nevermind that it may slip a bit or whatever. I would like to look like a synchronized swimmer, thank you very much.

Anyhow, I’d love to be on the end interpreting the data. Takes me back to separating the noise from the informative portions, in days of field research and pressure transducers.

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