Archive for the health Category

world aids day 2009

Posted in BC (beloved child the elder), BS (beloved spouse), CVID, FAMILY, health, jools (also a beloved child), miracles of science, political animal on December 1, 2009 by wrekehavoc

(no awful ’80s earworms today. promise.)

today is world AIDS day, a day started in 1988 to bring awareness and education to the plight of those living with HIV and AIDS. years ago, when i worked at the US Dept of Education, i had the privilege of putting together two years’ worth of WORLD AIDS Day commemorations plus helping to develop training materials for fellow employees so that they would understand how to deal with employees who were HIV+/AIDS patients. (in short: treat them as you would want to be treated. you won’t catch the disease from working with people.) i was proud to volunteer the Department’s building to house part of the AIDS Quilt, which was at the time laid out on the National Mall for all to see.  while sadly, the quilt has gotten larger, we seem to be learning more about slowing the disease and helping those afflicted live longer.

i know people who have died of complications from AIDS. i also know people who are living with HIV/AIDS.

yesterday, i was talking with my kids about AIDS, which is not easy to do when the kids are 10 and 6. i explained that it stands for acquired immunodeficiency syndrome. BC looked at me a little scared. don’t you have immunodeficiency, mom?

in fact, when i was first diagnosed with CVID, some people thought i had AIDS. i do, honey, i replied, but that’s different from AIDS. the A in AIDS means “acquired” which means doing something to get the virus. i didn’t do anything to get this immunodeficiency; i just was born with these particular genes. and you can’t catch it from me unless you have the same genes, too.

hellboy wasn’t getting this, really, but girlfriend was. and she continued. so what do you have to do to get AIDS? she asked.

well, basically, you can get it from other people’s body fluids.

she crushed up her nose. you mean, like pee?

once again, i am the one with the fun topical conversations, not BS.   well, things like blood, for example. before they knew more about HIV, they didn’t know much about the blood supply, so people who were hemophiliacs who got transfusions sadly ended up dying of AIDS.

what are hemophiliacs?

people whose blood doesn’t have the stuff in it to help them stop bleeding. a little cut could kill a hemophiliac if not treated properly.

girlfriend was connecting dots again. you mean, like when you had no platelets and were bruising? she looked sad.

that’s a different problem, and i’m better now. but sort of. (time to divert the attention in order to get her away from the thought of my demise.) anyway, people who share needles when they shoot up their drugs can give it to each other. so don’t do drugs and that’s one problem solved.

ewww! who would do that!!!! she exclaimed.

not anyone with any sense, i said. anyway, another way of getting HIV is… i looked over at the boy, who was probably busy thinking about star wars and continued cautiously…through sex.

girlfriend’s eyes now got HUGE.

we can talk about that part away from your brother right now since i don’t think he understands this the way you do. but know that there are things you can do to keep yourself as healthy as you can be.

girlfriend seemed satisfied with that answer, only stopping to note: mommy, isn’t that guy on EastEnders a guy with AIDS? (we’re so far behind in our episodes here in the US that Mark Fowler is still alive.)

yes, honey. and he still is living like everyone else on the show.

i got a nod from her, and then we moved on.

it’s never easy talking with your kids about AIDS, but i figure if i start early at ages when they can understand and in words that they can comprehend, maybe i’ll help them out somewhere down the road.

then again, maybe somewhere down the road, there will be a cure for this scourge and moms won’t have to have these sorts of conversations.

blog action day: like the weather

Posted in CVID, FAMILY, health, ms. malaprop, political animal on October 15, 2009 by wrekehavoc

every year, i participate in blog action day.  i like to tilt at windmills as much as the next grrl, and they always pick topics about which i tend to care.

this year, the topic: climate change.

as a mom and as a somewhat crunchy being, i tend to worry about polar bears and glaciers and all sorts of seemingly unnatural alterations to our present time-space continuum. i often wonder when the day will come when kansas develops coastal waterfront property. i ponder whether my kids — and, G-d-willing, their kids — will inherit a world that continues to turn and continues to exist as we know it. and, being one whose own health is a somewhat fragile topic, i also do imagine the potential health issues that happen when climates go awry.

greater heatwaves hit people, especially those poor folks who don’t have air conditioning or who choose (insert tongue firmly in cheek as that word is said) to live al fresco.  (well, that’s what my conservative friends tell me. homelessness, apparently, is a life choice. and apparently, climate change is a complete farce. next, they’ll be telling me that i should trust in big business and the free market. but i digress. per usual.) and when it gets very, very hot, all sorts of diseases can become even more of a problem before. for example, mosquitoes would dig climate change, if they had brains bigger than an atom, because it increases their ability to find a date and dinner, which of course can lead to all sorts of happiness for mosquitoes but also a whole world of trouble for us two-legged buffet tables.

and when it’s cold, well, in short, people freeze to death.

i suspect there are potential long-term problems in the offing. agriculture can suffer, which could mean people could go hungry, people might have to move.  while in the midwest recently, i saw a news segment about a farm that had a bumper crop of pumpkins thanks to the hotter, wetter summer. however, every other crop of theirs — tomatoes, etc — went straight to hell thanks to rot. i’m not especially a fan of pumpkin pie, and i don’t want to face a future where i have to eat any sort of squash in order to maintain my existence.

see, one can only eat so much zucchini before one contemplates something drastic.

now some people think that global warming is a crock of shit.  but i find that a lot of the commentary on global warming tends to be from people who cherrypick their data. i will freely admit that as someone who doesn’t study the topic 24/7, i try to comprehend the information that bombards me. but i cannot understand people who shut down the discussion. i have plenty of friends who think the whole idea of global warming is bunk, and they pull my tail at all turns (and they will likely pull it in the comments section as well. go for it, kids.) even if you believe global warming is bunk, can you not fathom the idea that perhaps looking toward some better practices could only improve health on the planet? is it so wrong to try to develop and use new technologies to use fewer amounts of non-renewable natural resources and possibly, just possibly, make the air cleaner and easier to breathe? is it wrong to try and work on agricultural solutions that don’t employ so damn many chemicals, some of which are polluting not only the earth but ourselves, thanks to the toxicity of these antibiotics and other supposedly-safe substances on our systems?

i get very tired of the naysayers who don’t want to explore solutions and who only want to piss on the progress parade.

so all right. who knows whether the ice age is coming. who knows whether we’ll all evaporate into vapor. who knows whether animals as we know it will die out.  we could all be drinking beer with jimi hendrix in heaven tomorrow for all we know. but i believe that  it is our responsibility as people on the planet to encourage anything to help us all live healthier lives, and that includes voting on policies that encourage safer and environmentally-friendly industrial practices. who knows: there may be an economic stimulus in there somewhere that will help us get out of this global financial rut we’re in as well.

it could be a win-win on the health front: our health, and the health of our world.

guilty pleasure monday: veronica (elvis costello)

Posted in FAMILY, guilty pleasure monday!, health, miracles of science, music on July 27, 2009 by wrekehavoc

a special guilty pleasure. and not just because my beloved macca is involved.

elvis costello, in my estimation, is one of the best songwriters of the 20th/21st century. it was no surprise to me, then, when, in the late 1980s, he teamed up with paul mccartney (no slouch in the songwriting department) to co-write the album spike. (and paul plays that hofner bass on the album, too! squeee! okay. okay. i’m back now. i’m calm.)  i am not terribly fond of some of costello’s output in the mid-1980s, though upon reflection, there are some incredible gems that i simply wasn’t ready to appreciate in my younger years (like his magnificent modern jazz standard shipbuilding, for example. [bummed i can’t find a version with the incredible chet baker trumpet solo.]) but spike seemed to be a musical kick in the pants for costello — his musical energy rebounded, and he produced some fine work.

veronica actually ended up a hit in the united states; and what a curious subject matter for a hit record. costello writes about an older woman who is clearly battling with some memory-robbing illness — dementia, alzheimers, or something of the like. she floats in and out of lucidity, remembering the scary parts of life as well as the blissful moments.

i suspect this song has always made me think of my grandmother. my grandfather died about a year before this song was released; and i think when he passed, my gram as i knew her passed, too. though her body was in tremendously healthy shape, she started down that slippery slope of dementia, just as veronica did. it was very hard to watch; i will never, ever forget the feeling of having someone who loved me dearly not know who i was. but once i realized that my gram was essentially gone, it became a little easier to bear. i started to think of her in a more scientific way: i was fascinated to hear about the places where her mind decided to visit. some days, she was a young girl in new york. she’d speak yiddish, and i was at the mercy of my parents to translate how old she was in that time and what she was doing in her mind. (and unfortunately, their yiddish was not quite what it was, so sometimes, we just had  to smile and nod.)

and yet, there were those moments when she was there. by G-d, if you were not respecting her, she’d hand your head to you.

you never knew which lady you’d get when you dropped by the nursing home.

anyway, gram’s been gone now for nearly 13 years, but fortunately, the gram i remember is a feisty, tough-as-nails  lady.  the lady who wasn’t all there? that wasn’t really my gram.

Veronica sits in her favourite chair and she sits
very quiet and still
And they call her a name that they never get
right and if they don’t then nobody else will
But she used to have a carefree mind of her
own, with a devilish look in her eye
Saying “You can call me anything you like, but
my name is Veronica”

the lady may have had issues with her memory, but i’d like to think that she was going to hold onto her dignity no matter what.

and she did.

knife and fork

Posted in bootcamp bottomfeeder, BS (beloved spouse), health on June 3, 2009 by wrekehavoc

welcome to today’s edition of boot camp bottom feeder!

(or why i refuse to let a knife and fork dig my grave.)

in a moment of insanity fit of hysteria second when i was inspired to just do something about my weight and health, i committed myself to an asylum a month-long bootcamp. a bootcamp that i can continue with until the end of september if i so desire. a bootcamp that is both land-based AND amphibious. (as in we run AND we swim, somewhere in between squats and other excruciating moments with our instructor, a triathlete.) a bootcamp for which i must awake at 5 am every morning (and which also means BS must awake at 5 am, causing him much unanticipated happiness, as you might imagine. who loves you, BS? the most wonderful, supportive husband on the planet i have, you know.)

today was day three of the saga that you’ll hear about already in progress; and i’m here to tell you that i am, in fact, the class bottom feeder. because of the bionic knee (and the zillion pounds atop it), i ran/walked a timed mile today (where others did two. yes. there were people who lapped me. they did two miles in less time than i did one.) yesterday, i swam a timed 150 meters where others did 200. (and also lapped me.)

and in between it all are pushups and squats and all sorts of torture designed to make your muscles wake up and realize that they have a purpose other than waving at the french fries as they pass by on their way to the tummy. damn – every time i rolled over in bed last night, i woke up in pain — my stomach muscles are probably in complete and utter shock, having been on vacation since 2003. our instructor is cruel but fair.  she’s a late-20s lady who probably does all of these things and more before she comes to our class. but bless her heart, she does the job.

okay, okay. so the only reason i didn’t come in dead last today in the run was because a 50-something guy who is a runner had knee surgery, so he has to walk. (his wife is also a triathlete. what is UP with these people. they do this FOR FUN?) but here’s the good part:

i finished.

and i figure, if i keep this up and i watch my food intake, i might lose a few pounds like my pal leifer, who is slimming down, too.

it’s funny — i’ve been working out on ellipticals and treadmills and such, and yet none of that seemed hard, like this is. i think i have a tendency to coast when i  am on an exercise machine. (hell, i sing and dance on the elliptical when a great song comes on, much to the laughter of the people at the community center who pass me by. like i care.) so for now, i’m trying exercise the old fashioned way.

yeah, it would be more fun if i were playing a sport. but i figure i’ll do this. i need to think up a reward system: finish a week, do X. finish 2 weeks, do Y. finish a month?

achieve nirvana?

i’m so tired

Posted in BC (beloved child the elder), health, jools (also a beloved child), miracles of science on April 14, 2009 by wrekehavoc

so i’ve just returned from something called a sleep study. i haven’t been sleeping well for awhile — and not just because there are little people who occasionally wake me up at night over a nightmare or feeling barfy. i don’t quite breathe right, and every morning, i don’t exactly wake up fresh as a daisy, so to speak. my pulmonologist decided i might have sleep apnea and sent me to get a sleep study. in theory, this might be the easiest test you ever take. in reality, perhaps not so much.

our sleep center happens to be located in our local hospital — yes, the same one where i not only had two babies but also spent two weeks searching for my dear departed platelets. jools was soothed enough when i told him that they would send me home by 6 am (the same time he wakes up), but BC was completely wigged out. seems that the girl remembers my history of going to the hospital to check something out and then getting locked up there for awhile. in short, she was afraid.

it’s very difficult to be ill as a parent. it’s hard enough to be ill, of course; but when you’re a parent, there are other people who are younger and more sensitive to think about. it destroys me to know that my daughter will forever be freaked out whenever i go to a hospital, even for the most benign reasons (such as a sleep study.) we had sturm; we had drang; we had a lot of tears.  but the time came, and i had to leave my girl, sobbing in her daddy’s arms.

to be honest, i wasn’t exactly enjoying the idea of spending a night in the hospital. i had to check in through the Emergency Room registration, as regular registration is closed at 8:45 pm.   i dread ERs simply because i do not want to catch whatever the hell is in there. luckily, then, they speedily send you to sit in the main lobby and wait for the sleep team. as i am friend to the friendless, i ended up talking with a hospital employee who was sitting and waiting for someone. we talked about how his night-shift work was destroying his life and himself. (yeah, i have that affect on people. i have missed my calling as a talk show host.)

eventually, the sleep team came and escorted me and two men up to our expensive hotel rooms our rooms, which had bathrooms with showers. oddly enough, no complimentary soap. i filled out some forms, had electrodes placed all over me, and learned about the cpap machine (in case they needed to use one on me in the night, they didn’t want me to be freaked out by someone putting as mask over my face while i was in a dream state.) who knew that there is a mask simply for women? (i was told that as women age, our heads get bigger but our noses shrink. that’s one for the books.)

and then, nighty-night time. on the bright side, the hospital now has regular TV remotes instead of the huge thingies that don’t let you do anything but move a channel forward. however, i was so tired, i just turned it off after 5 minutes of la grande illusion and tried to sleep.

try would be the operative word. i tossed. i turned. i couldn’t get comfy all wired up. oh, and i was afraid i would have to wake up and hit the loo, which would mean that the lady who helped me would have to actually come in, unwrap me from my cords, and take me to the bathroom. no thanks. i think i slept a tiny bit, but most of my night i recall being awake.

so i’m not entirely sure what they’ll study.

fool in the rain

Posted in FAMILY, health on April 1, 2009 by wrekehavoc

not an april fools joke. my mom went to the hospital this morning with chest pains. i’m sure she’ll be okay, but she has to have a heart catheterization to make sure. i may be scarce from here for awhile.

sorry i’m not funny today.

hello

Posted in bad '70s music, BC (beloved child the elder), BS (beloved spouse), CVID, FAMILY, guilty pleasure monday!, health, jools (also a beloved child), music, political animal on March 27, 2009 by wrekehavoc

just saying a howdy to anyone who might have wandered here thanks to the magic of television. i’m your host, wreke, and i’d love to tell you a little about the place.

i’m a mom. i’m a writer. i’m a webgrrl, too. i’m also the toilet paper fairy and apparently the only person in this house who realizes that bath towels do not jump up and clean themselves. oh, and i’m from NJ; and yes, i can trace the first 24 years of my life based on exits. (for you jerseyan trivia buffs, i grew up at exit 82A (GSP), went to college at exit 9 (Tpke), and have lived off exits 105 (GSP), 8, and 10 (both Tpke) until moving to the Commonwealth. and no, i do not sport big hair but i do sport a big mouth.)

i’ve been blogging since 2002. i tend to write about my kids, daughter Beloved Child (BC) and delightful hellboy Jools (an equally beloved child; he was just born after i had been blogging about BC for awhile.) as a political animal, i often tilt at windmills, large and small, in the political arena.

and i lurve music. every monday, i feature a guilty pleasure song that would make my music snob pals cringe. i’m evil that way. one month, i featured blatantly bad 70s songs, every single day of the month. oh, the humanity!

i don’t capitalize often. i do know how, and it isn’t an e e cummings thing. i’m just l a z y that way. unabashedly opinionated, i’m sort of like a cross between erma bombeck and iggy pop, only i don’t smear food all over my chest when i’m pissed. i simply write. (well, i irritate my Beloved Spouse, aka BS, generally. but the warranty is up, so he can’t throw me back, no matter how annoying i become.)

and occasionally, i’ll talk about CVID, something i wrestle with daily. it stinks, but i intend to live to be a pain in everyone’s collective ass for a very long time.

so welcome. poke your nose around. kick the tires. applaud me. argue with me. whatever floats your boat.

just don’t mind the dust bunnies. my masters isn’t in housekeeping, you know.

mamma mia

Posted in BC (beloved child the elder), BS (beloved spouse), FAMILY, health, jools (also a beloved child), ms. malaprop, political animal on March 17, 2009 by wrekehavoc

a woman on my favorite list, DC Urban Moms, had the gall to share a well-written article from The Atlantic. (kudos to you, girlfriend.)  she asked not to be flamed, which of course incited some serious flames among the well-thought-out posts. (and i don’t mean well-thought-out in the sense that i agree with all of the posters’ points; i just thought they made some interesting and useful ideas known, as opposed to the ones who think that anyone who isn’t comfortable breastfeeding requires professional help. to which i’d reply, yes: cleaning, cooking, and other domestic professional help.)

anyway, i thought i’d share my response for those of you not lucky enough to be among the group. i got a little upset, to say the least.

as always, your mileage may vary.

~wreke

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

this article resonated with me. VERY deeply. i’m not being my usual politic self. apologies in advance.

i was unable to nurse my babies; and Dog knows i tried. with baby#1, i read everything known to humankind about nursing. a week postpartum, my DD was losing more than her normal share of weight (to the point where she may have been in danger) and i was freaking out. i was determined to make nursing work, even though my pediatrician — who is incredibly supportive of nursing, btw — strongly recommended  i supplement my DD with formula for her own sake. i pumped. i tried to feed her (though we were imperfect nursing partners.) i called la leche.

the la leche representative Brought. Me. To. Tears. this woman seemed far more concerned with carrying the torch for nursing than she was for the well-being of my child and myself. hello? yelling at an engorged, wildly-hormonal, first-time mother because she is considering feeding her starving child with formula is not the way to go.this was not the case of the expected one-week weight loss. this was a crisis in the making.

no one wanted to make this work more than i did. i was in an endless cycle: nurse the baby as best as i could, then supplement with formula, then pump. (oh, and i worked full-time and had to pump *in the bathroom* during the day.) for those of you who got the hang of nursing easily, it’s quite simple to turn your noses up at people like me and think we didn’t try hard enough. that we need professional help if we’re stressed because we can’t get the hang of the balance right with work and child and feeding. you simply have no idea of the pressure you feel when you fail. (or, as the author did (after nursing her first two) when you decide that you’re done.)

the AHA! moment came from an unexpected source: my husband. he had seen me in my round-the-clock-dance of nurse-feed-pump one too many times. and there i was, in pump mode, sitting in the middle of my kitchen floor. 3 AM. crying. “honey,” my husband said, “our daughter needs a sane mom more than she needs breastmilk.”

yes. exactly.

i understand that fewer women breastfeed in the US than in other nations. i get that people want to promote nursing. i’m on board with it as being a completely natural thing to do and get equally upset when women are told to hide or leave the premises rather than to nurse babies. i will admit  — and i don’t care if people flame me, btw — that i don’t actually understand why moms still nurse kids who are in kindergarten; but at the end of the day, it is their choice — not mine — to make, and so i respect that choice and stand ready to defend it if necessary.

but what i don’t get, and what i hear in this article, is the pressure that people in the breastfeeding camp have placed upon a whole generation of women. listen, sister la leche: those first five months with my baby? they’re gone, and they’re not. coming. back. Ever. and while they weren’t completely unhappy, they consist greatly of a blur of inadequate feelings Because I Could Not Nurse. And. My. Baby. Suffered. For. It. needlessly, i’d add. the pressure was THAT intense. my baby could have been happy AND HEALTHY with formula — what’s more, her mom could have been happy and healthy *with her*. but the message i received throughout my pregnancy and thereafter was that i was somehow failing my daughter in my very first task as a mom. that message is especially crushing for a first-time mother. i wanted to do what i understood was best for her. thankfully, when i grew mom-balls and started trusting my own judgement on what is best for my child (in this case, by giving her formula), life inched its way toward the quasi-nirvana we enjoy to this very day.

sometimes, i think that breastfeeding advocates, as well as rank-and-file moms on the upper/middle class milieu, often lose sight of the forest for the trees. shouldn’t we be supportive of WOMEN? some women are uncomfortable with the idea of nursing for reasons that might be more personal than you or i can fathom. some women, like me, simply are not able to nurse (and yes, i have receipts somewhere from the lactation consultantS i saw — for both babies, btw — i tried, and failed, again with baby#2.) whatever: it’s not for me or you to decide whether they should or should not be nursing. if they want to nurse, let’s give them information and help them along. if not, let’s support them, too, and not treat them like they are amoral, child-abusing, pariahs. the best thing we can all do for each other is to give each other the courage and support to make the best decisions for our children. and not just about breastmilk, either.

after all, there is so more to being a mother than whether or not you serve up lunch from your mammaries.

what a difference a day makes

Posted in BC (beloved child the elder), BS (beloved spouse), CVID, FAMILY, health, jools (also a beloved child), miracles of science on February 18, 2009 by wrekehavoc

yesterday was the anniversary of the date i first went into the hospital, three years ago. i never knew a day could change my life so radically, but then again, as the old clichee goes, what a difference a day makes.

my doctor had called me back late that afternoon with my blood test results. i think i may be the poor guy’s medical bete noir; i’ve thrown down shingles at him as well as other interesting medical predicaments. you know, he said to me, your reds and whites look fine to me. but its weird — something must be wrong with the test — we can’t get a reading on your platelets. he had already seen how i was black and blue all over (crack whore, the description my beloved pal jaxx had given me a few days later, was how i truly looked); when i told him about today’s joys, a never-ending nosebleed and the fact that i was, er, let’s just say hemorraghing, he told me that perhaps i ought to hit the ER.

my best bud murph ran home from work, stayed with my kids, and BS and i hit the ER. and waited. and waited. and waited. two men who were also waiting are forever pinned in my memory: one, walking around with his urine sample and complaining bitterly of the pain he was in, and another, whose stitches on his knee had opened and who was raining blood down on the floor two seats down from me.  i felt this eerie calm, like i was sleepwalking, as i marvelled at the men. jesus, i said to BS, one guy has a urinary tract infection and is screaming like he’s about to die. i’d expect that from a woman in labor, but if every woman with a UTI screamed like that — and it can be painful, i know — the world would be wailing. and i just watched the blood drip…drip…drip onto the floor from the other man’s knee. later, i would watch a cleaner come and mop it up. and then mop some more elsewhere.

ew.

anyway, the ER nurse, when i finally saw her after giving blood, proceeded to laugh at me as i recounted how my previous day had gone down: i had dropped one child off at school, gotten on the bus and gone downtown, walked a half mile to my office, worked, met friends about a half mile away for lunch, walked back, worked more, walked to get the metro, took it to hellboy’s preschool, picked him up, picked up the car, drove over to pick up BC and BS at BC’s school, went home.

did you not notice you were tired? she asked.

i replied, i’m a mother of two young children. i’m always tired.

apparently, not tired enough to notice that i had almost no platelets left in my system. normal levels of platelets are 150k – 400k, for you trivia buffs. below about 30k, they want you in the hospital. below 10k, you’re in danger of your brain bleeding.

when i hit the hospital’s ER, i had 2k.

(yeah, i’m an overachiever.)

no one knew why my platelets had disappeared, but they threw some platelets in me to try to get me stabilized. i ate those suckers up like wheaties; the benefit didn’t last long. idiopathic thrombocytopenic purpura was the term thrown at me. which, in english, means your platelets have fallen and they can’t get up. one theory was that my son, who had been ill, gave me some regular old, garden variety childhood virus that i had never had (and which makes grownups quite a bit sicker, apparently.) so they gave me some antivirals.

they also pounded me with steroids. after a few days, my platelets went up to a respectable 36k, so they let me go home with the stipulation that i hit the hematologist the very next day.

and hit it i did.

when i visited the hematologist, my platelets were back down to 4k. whee! this gave me a free pass for a bone marrow scan. i hope none of you, NONE OF YOU, ever have to get this. i wouldn’t wish it on my worst enemy. you are awake. there’s a tiny bit of local, but you feel the scraping of the doctor inside a piece of your hip bone. the pain is excruciating, like childbirth, only with childbirth, you are pretty sure you’ll have a happy outcome. with a bone marrow look-see, you’re praying for the best possible outcome, an outcome that doesn’t involve a horrible illness that will shorten your days. the technician helping my doctor gave me a tiny little bear to hold. i was grateful for the kindness, but i was lacking the will to be creative that day. i named him platey. he rides in my car to this very day.

and while they scraped around inside me, i talked. i talked about jamaica. i talked about the sunblue waters in which i once swam, in which i once snorkeled and saw the most beautiful, colorgleaming fish, fish i never think i’ll see outside of an aquarium. i tried so very, very hard to be anywhere but in that little room. i wanted to think about a place where i had been so very, very happy. and i didn’t want to think about my children, as i couldn’t bear to make any mental leaps about my children and sad, sad, news that hung over me like a shroud.

when it was over, i had to wait for my doctor to get it all together. he was going to look under the microscope himself. the longest half hour of my entire life. i sat there and planned my funeral. who would be at my funeral? where would i be buried? what songs would they play? who would be looking after my children? how would my husband cope? would my parents ever recover from this or would this kill them, too? i tried so very, very hard not to cry. but i hurt, inside and out.

soon, BS joined me in my personal circle of hell. and the doctor broke out his little slide and started to look. come here, he said to BS. i want to show you something under the microscope. surely my hematologist wasn’t going to gleefully show my husband my death sentence, swimming around on a little slide. surely it would be a sick and cruel thing to do. i sat up as straight as i could.

see, these are platelets,” the doctor showed BS. “tons and tons of platelets.  she’s making them, which is a great thing. your wife has the hardest working platelets in show business. something must be killing them on their way to the spleen or at the spleen.” in other words, i was having some sort of crazy autoimmune episode where my body marked my platelets as invaders and shot them down. giving me more platelets wasn’t going to do anything but give my body more opportunity to shoot down more little platelets.

the good news: not cancer.

the bad news: back into the hospital with lots and lots of steroids. BTD (aka my brothuh the doctor, for those of you new to the place) was totally in the act now, talking with the hematologist, telling him about when he had ITP and then was discovered to have CVID. the pieces of the puzzle were coming together, although my hematologist, unaware at the time of any genetic link for CVID (or any link between ITP and CVID for that matter), was absolutely gobsmacked. when this is all through, you need to see my friend in bethesda. he needs to take a look at you and help you figure this out. this is amazing, this is. (and i do now see his friend in bethesda. every 6 months.)  in the meantime, have you tried giving her IVig? my brother asked.

IViG was very difficult to come by then; i had heard that they were saving it and sending it out to the troops in Iraq, though i’m not sure how accurate that is. but i knew my brother couldn’t get any for me at his hospital. my hematologist probably gave away his first born child for me; he somehow finagled three treatments for me from other hospitals. too bad for me, no one knew i would have a hideous reaction to it my first time. once i premedicated with benadryl, though, things were looking up.

after nearly two weeks in and out and in the hospital again, i was set free. my count was improving, though i had to stay on massive doses of prednisone for months afterwards, which made me a little teeny eentsy weentsy bit psycho..heheheheh. (and waaaaay fat. but better to be fat than be dead, i always say.) but over time, i improved and improved. i was so grateful for all the support my family and i received from friends and coworkers. my boss — hell, the entire organization — could not have been more wonderful in my absence.

but that day completely changed the course of my entire mental state, my entire perspective on my life, my family, my work, my very existence. today, i am relatively healthy — my platelets were clocking in at 215 when they were checked in january — but i know now that every day being well, being on my feet, being here — is a day that i wouldn’t trade for anything.

i love you suzanne

Posted in health, ms. malaprop on February 12, 2009 by wrekehavoc

so today, one of my best friends from college is having a heart procedure.  this girl is so dear that words are hard to find when i think about what she means to me. she is a wildly-hardworking person. she is a loyal person. she is a very, very warm-hearted person. my kids love when she treks down to visit once or twice a year, especially because she always does a huge sweep at Target and brings them all the candy and crap i deny them. (of course, there’s the good humor she displays, too — like when she ended up picking blackberries with us in the middle of nowhere and jumping on a giant inflatable… i don’t know what it was called, but it sure was hella fun.)

i’m sure she’ll be okay, but i must admit, it has struck me right between the eyes. someone else my age is mortal, too. historically, i’ve sorted my college friends into tidy mental boxes, sort of like the Beatles were when they first hit America; i’m the sick one. another girlfriend is the one who has had epic and horrific love affairs. and this one? she’s the workaholic. no one is supposed to be working my side of the street; i’ve taken on all the awful illnesses so no one else has to.

but no one can stay in their own box forever, i suppose. the one who has had bad luck with men just got married to a real keeper. and i have had moments in my career when i suppose workaholic would have been an appropriate tag (i remember sleeping at my desk once or twice about 15 years ago when i was enmeshed in the world of the burgeoning internet.) so it stands to reason that someone else could have something seriously wrong with them. fixable, thank G-d, but serious nonetheless.

anyway, i’ll be waiting til later today, when i can pester her — or her mom — and find out how she’s doing. summer’s not far off, and she needs to plan her next trek down to the southland. my kids are down to their last 6 pounds of halloween candy. and SOMEONE’S got to supply them with more Pez.

get well soon, suz.