miracles of science – Page 8

Category: miracles of science

professional patient

Posted on September 17, 2007 by wrekehavoc

another day, another scan. i can safely say that if someone clever at washington radiology had a little too much to drink and perhaps a little more time on his hands, he could have fun piecing together various body parts of mine which have been scanned over the past year and a half, thanks to my illness. i suspect that one night, BS will wake up and see my body, bright in the darkness, beside him. i suppose it would be a way to earn extra money (come see the freaky-ass mom who glows in the dark!) and hell, it will make it easy for the cars to see me and my kids come halloween night!

last week’s scan of my abdomen showed i have either a little gallstone or a polyp. joy. my doctor isn’t convinced that something that small is causing my discomfort — he’s wondering if something else is causing me pain. (like i even want to find out.) today, i had to get a scan of my chest (no, not a mammogram — although that’s overdue for this year, too) to see whether those fun little nodules i have in my lungs stayed put, or whether they’ve decided to do something crazy (like form a third political party).

it was one of the radiology tech’s first day at work today, so i had to explain why i was getting today’s CT chest scan. how people with CVID often get infections and fun things show up on chest and sinus scans because of it. its the same reason, essentially, why i get to have my very first endoscopy later this week. (can you say higher incidence of stomach cancer?) boy, there’s nothing more fun than having a tube down your throat. oh, wait. there is. having an endoscopy AND a colonoscopy at the same time. now THAT’S got to be more fun than humans ought to be allowed to have.

i can’t wait for september to be over. i scheduled all my fun things — plus some more IVIG goodness next week — this month. next month, i want a new challenge. something really scary, not like this life-threatening illness crap.

i think i’ll take up skydiving, though photocopying my ass seems equally dangerous and more in order.

my brave boy

Posted on September 11, 2007 by wrekehavoc

we all know that officials from the district of columbia move in mysterious ways. very little can explain things like this, for example. hell, very little can explain how marion barry continues to have a career in politics. but that’s the beauty and wonder of DC.

so it should come as no surprise to anyone that the licensure people from the district came to my son’s school the other day. for years and years, no one from DC licensing cared when kids’ lead tests were done. and here in VA, no one really cares after the 1st necessary one at a few months old.

surprise!

now they do. and if all of us folks don’t get lead tests on our kids by early october, well, there will be fines. inadvertent preschool dropouts. cats and dogs. living together. mass hysteria. you get the picture.

so today, instead of having a special day with jools, i had a morning of nooooooooooooo, mommy. i don’t want to have a blood test!
noooooooooooooooo!

now, i can’t blame the kid. of course, i get poked or jabbed at least once a month these days (and yesterday, i had a whopper of a shot in my knee, so believe me, i am empathetic). but when its a rare thing, like it is (thankfully) for poor jools, well, damn, it’s hard to explain. so you do what any sane parent does. you employ the most important survival tactic known to parents everywhere.

you bribe your child.

let’s see: the kid got a lollipop (before lunch! he gleefully told anyone within earshot! yep. a day without mama the hardass.) the kid got to eat chips from taco hell. and when we visited the library, the kid got to spend 30 minutes on the kids computer. 30. whole. minutes. and i neglected to find a book to read before that. so i sat and enjoyed the silent screen version of bailey’s bookhouse. for. 30. whole. minutes.

[somebody please help me. i’m melting.]

but you know what? the dude earned it. we sat there, with gospel music blaring from the phlebotemist’s radio, and the dude barely even whimpered. he even thanked the lady for the bugs bunny band aid. maybe it was the gospel stuff. who the hell knows.

all i know is that i can hardly wait for flu shots…

all i want is everything

Posted on September 7, 2007 by wrekehavoc

with sincerest apologies to southside johnny and the asbury jukes…

i feel good today. r e a l l y good. don’t know how long the feeling will last, and nevermind the fact that i have to go get a CT scan of my chest and an U/S of my abdomen. (bahaha. i want a doctor to take your picture so i can look at you from inside as well.) i. feel. good. (dagnabit.) when i feel good, i feel like i can think about the future. cos when i feel good, i feel like i’ll be around a loooooong time into the future.

so, i was mentally cataloging things this morning while waiting in the hematologist’s office (platelets=190~ IVIG is my friend!). things i want.

1) eight consecutive hours of uninterrupted sleep.

2) well-adjusted kids who seem relatively happy doing what they’re doing.

3) a rest for my BS who could definitely do with one.

4) plenty of time to play.

5) plenty of time to write.

6) plenty of time.

7) an opportunity to see family and friends who i don’t get to see all that often.

8) an opportunity to apologize to people i was horrid to when i was a teen (i have been reading my journals from high school, and there are a few people i inadvertantly messed about a little. not intentionally, of course — i was a mixed-up kid, just like the next one. i just didn’t see the view from 40,000 feet like i do now.)

9) time to be what i always wanted to be as a grownup.

10) repeat.

i feel good. so i sort of have everything. already.

fried pepsi???

Posted on August 21, 2007 by wrekehavoc

from the land of WTF:

The deep-fried Combo Plate may be a little more healthful this year at the Great Indiana State Fair. So say the fair’s leaders, who, taking a step rarely seen in the realm of corn dogs and fried pickles, have banned oils with trans fats from all the fryers that line the grounds here.

somehow, i missed the whole fry-anything-that-doesn’t-move experience. who is the genius that thought up this concept in food? i mean, fried snickers bars? fried oreos? fried pepsi??

yes, virginia. deep-fried pepsi. take pepsi-based dough, dip it into pepsi-laced batter, and deep-fry. serve it with pepsi syrup, whipped cream and cinnamon sugar. mmm, mmm. dats good eatin’. michelin would give it five stars, i’m certain.

hmm…

1) who the hell likes pepsi so much that he wants to pray at its altar and eat a dessert dedicated to its flavor? and what the hell IS pepsi flavor, anyway? someone at IFF is probably laughing all the way to the damn bank.

2) i can understand why cities and restaurants want to ban trans-fatty oils; i applaud the effort. but hell, if someone is hell-bent on eating a deep-fried ho ho, don’t you think that the oil is the least of it?

3) if vendors are bitching that they have to change the oil more often, wouldn’t that make you wonder whether they ever change it?

fair food. one guy called it a little slice of heaven. i don’t know about that, but eating it might get you there a little sooner than you’d want.

gifted

Posted on August 16, 2007 by wrekehavoc

a friend of mine posed a question to the ed reporter in the washington post today: tell us about the gifted and talented programs in the area? i don’t know about them other than the fact that for some reason, they teach accelerated math to all of the kids in BC’s elementary school. and i’ll be interested in the answer, though how that will impact our collective lives here is another question. i’m what you call a skeptic 😉

as the parent of an 8 year old and a 4 year old, i am seriously amused at the number of people around here who think their kids are gifted. i guess we all live in a super-special lake wobegon, where everyone is not only above average but in the top second percentile. i am often amused at how agitated parents get over whether the school is providing enough intellectual stimulation for their child/ren.

i once blogged on this topic awhile back because i was just so annoyed by the never-ending onslaught of parents obsessed with the state of their particular child’s “giftedness” (for lack of a better term).

honestly, for every child i’ve met who was designated as “gifted,” i think i’ve met only two or three who truly were. and the one thing i truly fear are parents and programs who believe that if a child is gifted in one area, then the child must be accelerated in all areas. this happened to me; and while i was arguably gifted in some areas, i was just your regular sort of student in math. put in a class with folks who truly should have had accelerated experiences in math, i ended up a fearful math flunky who didn’t recover until graduate school, years later, when a professor helped me rebuild my confidence in my abilities.

i remember when a certain psychology was in vogue — past life regressions — where people would be in some sort of hypnotized state and then come out believing that their ancestor was Cleopatra, or George Washington, or someone famous. no one seemed to come out of it with ancestors who were just regular people building the pyramids or fighting in the Revolutionary War. thus it is, i think, with children around here and gifted programs. somehow, every child who is bright is suddenly dubbed gifted.

and, if you pardon my grammatical error, it just ain’t so.

endeavoring to believe

Posted on August 8, 2007 by wrekehavoc

we were eating at a restaurant/bar tonight when we saw that the space shuttle endeavor was going to launch at 6:36 p.m. we rushed home so that we could all watch it together. i was very nervous about this. i remember one afternoon in 1986 when my dorm-mates and i had our soap operas interrupted because of a space shuttle launching. and before our eyes, we watched the shuttle explode into a billion fiery pieces. we were all stunned. it was live. on TV.

nothing had ever happened like this to our generation before. previous generations had the question: where were you when Kennedy was shot? and now my generation had: where were you when the Challenger blew up?

college being college, i remember the fresh wave of sick jokes that followed. the only one i recall:

Q: where does christa mcaulife vacation?

A: all over florida.

(i know. no one deserves that.)

i was very nervous about having the kids watch the shuttle launch. nevermind how many successful space launches there have been in my lifetime; i was fixated on the one i saw that didn’t make it. of course, the newscaster was fixated on the teacher in space, who has been waiting patiently for over 20 years for this chance. it made me tear up.

“mama,” BC said, noticing me on the verge of tears, “don’t worry. they’re showing this on TV. they wouldn’t film it if something bad was going to happen.”

if only.

i’m delighted to report, though, that the shuttle launched without a hitch. my kids got to watch a little piece of history.

and somewhere inside of me, a tiny shred of sanity and wonder was restored.

silver wendy and dona

Posted on August 4, 2007 by wrekehavoc

silver wendy is a friend of my friend jaxx and, over time, a friend of mine, too, albeit mostly virtually. she set up this website to raise awareness of her dear friend dona, who is battling cancer. it always knocks me to my core whenever i hear about a mom who is doing everything to stay around. dona says it best:

I will dance at my sons’ weddings.

any support you might provide or links to her page are graciously appreciated.

reporting in

Posted on July 27, 2007 by wrekehavoc

i had an IVIG treatment yesterday, and i survived it 🙂 i was wicked tired afterwards — still am — but i didn’t seem to go through any sort of convulsions this time. i have a headache, but otherwise, i’m pretty damn good. i guess these things get better over time. now, if only the nurse could find a place for the IV on the first shot, it would be super.

finally, i received a copy of my trough levels — meaning the levels of IgG and IgA in my blood just before a treatment. not surprisingly, they’re low. in the inimitable words of my brother the doctor, “if they weren’t low, you wouldn’t need the treatment.” well, duh 😉 they broke down my IgG into 4 different types, which my brother also noted was a useless waste of test money, as i can’t control precisely what sort of IgG ends up in my gammagard soup anyway. all that’s important is knowing whether i’m low in total. which i am. sadly.

BS gave me a good perspective yesterday, one i needed to hear. he took me to wegmans after my treatment, and we sat and had the closest thing to a lunch date that we’ve had in years. i started to whine about what they might discover in the blood supply in 20 years. i mean, look what happened to those poor hemopheliacs before they figured out the whole HIV thang. and BS looked me in the eye and said one of the smartest things he’s said in a while: “you take this stuff so you can be AROUND in 20 years. without it, there’s a chance you won’t be. so don’t worry about what they’re going to discover then.” the point, you see, is to make it there 🙂

and i intend to.

today in the world of health

Posted on July 10, 2007 by wrekehavoc

today i had a double-header, so to speak.

first up: the hematologist. i go every two months now to get my platelets checked. they have been going down slowly, though they’re still in a normal range (170 for you trivia fans who might remember the days when i was at 2. you can tell when it happened, too, as i didn’t post a hell of a lot in february or march 2006, did i?) of course, i am a little frustrated, as no one in particular seems to be driving my treatment train, so to speak. i absolutely lovelovelove my hematologist (even if he does root for cleveland — just kidding, doc!), but he was unable to procure my IVIG. he had a friend, a very wonderful infectious diseases doctor, who can and does give me my IVIG. i have seen her once. otherwise, i see her nurses every six weeks. but i have not yet received my trough levels; my hematologist never received my trough levels; and no one seems to want to talk to me about whether every 6 weeks is sufficient or whether i need to move it up to 4. maybe it’s too early to tell, but it would be nice if someone out there told me that rather than allow me to guess ineffectually.

the nice part of going to the hematologist’s office is that the staff, from the receptionist to the physician’s assistant to the phlebotomy staff to even the doctor himself (who wasn’t scheduled to see me today but was so wonderful to ask me how i was — i saw him glance at my tell-tale yellow sheet of paper to make sure i hadn’t dipped into scary numerical areas) treat me so wonderfully, like a returning hero. these are people who had to re-admit me into the hospital and send me to the ER yet another time. they are the people who were there the day i had my bone marrow test. they remember what i looked like during the height of my steroids. and, while i’m no kate moss, i look a bit better now. my reception is often akin to that of the bowl america commercials — where everybody cheers. they’re cheering because it’s at least one patient there who seems to be doing ok.

and ok, when you’re in hematology/oncology, is pretty fucking good.

but wait. there’s more.

part two of my day: my dinner with andre.

(oops, wrong day.)

actually, my appointment with the knee surgeon. when we last left our hero, she was hitting physical therapy twice a week, incurring the wrath of hellboy (who often missed his day home with me because i simply cannot bring him to a place where he can end up with a weight machine for a necktie). and last week, the staff nearly lynched me because: a) i broke the game boy (i’ll ‘splain in a sec), and b) i broke the cybex tester.

now, the game boy has a real name, but i just like to call it NAZI ELECTROCUTION MACHINE FROM HELL because it’s a little palm-sized zapper that is supposedly helping to re-educate my quads. to say i hate this thing would be an understatement, sort of like saying george bush is a bad president. but every week, i have to sit there and literally zap myself 25 times (with a 10-second rest period between each 10 second zapping session). i’m firing myself up, though i would prefer doing that with a mojito, if only someone would ask me.

but i digress.

anyway, i went to use it last tuesday and ZZZZZP. the damn thing died. it’s like it looked at me and decided to go to that great physical therapy carnival in the sky. the therapist, who knows i curse this thing night and day, was quite sure i put a spell on it. i got the look, the one that says i hope blue cross blue shield picks up this tab, missy.

so then thursday, i had to take my cybex test. i think it’s officially thought of as isokinetic (cybex) strength testing and exercise. you call it corn, i call it pain. 3rd photo down on the right (once you click on the our facility link, since it’s built in antediluvian frames!) for you hardcore people who just have to know. only, too bad for me. some knobby thing on it has decided to give up the ghost. oops!

i’m dead certain that the office manager thinks i willed it to break.

so back to my friend, the surgeon. he told me i can come back in six weeks to take the cybex test again. and i’ve been let out of PT for good behavior as long as i promise to go workout with weights 3-4 days/week. someplace else.

maybe they just want to protect the machines?

pariah of the parent set

Posted on July 3, 2007 by wrekehavoc

so we’re waiting for the bus to camp — me, BC, her friend, and her friend’s dad. we only met yesterday, but they seem like really nice and interesting people. we’re chatting about all sorts of things — scooter libby, the idiocy of the president, that sort of thing that passes for pleasantries here in the nation’s capitol.

then, BC looks at my arm, which isn’t covered by a sleeve. “hey,” she says to her friend, “look at the holes in my mama’s arm!”

yep. that’s a conversation killer.

i had to explain to the father that, in spite of all appearances, i am not a smack-shooting mother but rather a person who gets hooked up to an IV every few weeks for some life-saving IVIG.

yeah. i’m sure we’re getting invited over for a playdate. real soon, too.