Archive for the miracles of science 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.

guilty pleasure monday: norwegian wood (beatles)

Posted in BC (beloved child the elder), FAMILY, guilty pleasure monday!, miracles of science, music on October 26, 2009 by wrekehavoc

please, please, please cut me slack this week.

as i write this, i am trying to make it through perhaps the worst month, or at least one of the very worst months, i have encountered in my short but eventful career as a human. you may recall the start of the month when my husband and my ceiling collapsed just over 24 hours apart. and yes, i left for san francisco, a story i have yet to finish here.

later that week, i took BC for a tonsillectomy/adenoidectomy, a simple operation with a short healing period everyone said. bring on the ice cream. only, too bad for the girl — she’s probably the only child on the planet who isn’t keen on ice cream, ice pops, or other soft, cold foods. additionally, the pain meds didn’t control her pain, and when they were raised, she threw up. on columbus day afternoon, she ended up visiting the ER to get some IV fluids because she was completely tapped out. when she returned, we thought we were going to turn a corner. and we did.

a bad one.

girlfriend was still not eating or drinking and getting sicker by the day, complete with a fever. anti-nausea meds were not making things any better. by wednesday morning, the ENT on call told me to take her back to the ER and possibly get her admitted to get her back on track. that’s exactly what happened. she and i spent wednesday through saturday noon at fairfax inova, a terrific hospital for pediatrics. we had a few challenges: one morning, we awoke to find the roof leaking onto her IV, so we were moved next door to a room where he child inside was confined because of “droplets” — a sure sign that someone in there had something contagious.

hospitals are important institutions, and i surely am not knocking them in any way, shape or form, as lord knows we have needed them in the past and will one day need them again, perhaps. but a hospital is not a great place to stay healthy.

i can’t be 100 percent certain, but i think that’s where girlfriend and i caught the flu.

when we were released on saturday, i thought the worst was over. girlfriend returned to school on monday. tuesday, i finally got my IVIG, albeit two weeks after i was supposed to get hooked up (i couldn’t schedule it while my poor little girl was recuperating.) tuesday afternoon, i started feeling poorly; at the same time, i received a phone call from the school clinic: come pick up BC. she has a fever of 101.5F.

what????

so girlfriend and i proceeded to spend some more quality time together. we went to her pediatrician’s on wednesday as a follow-up for her hospitalization. the doctor, noting that she still had a fever and was coughing, asked us to start some tamiflu just in case. BC is not yet adept at swallowing pills, so we visited a local old-fashioned pharmacy to get the darn stuff compounded into a liquid. (for you trivia buffs, the actual compounding part? not covered by insurance.) just before noon, she started tamiflu.

and at 1:00? she threw up a little blood.

people had warned me that when the artery/ies behind the tonsils blow, you need to run, not walk, to an ER. halfway there, i pulled over. there’s no more blood, mommy BC pointed out. i called BTD because, after all, he is my Brother The Doctor, who talked me down from the ledge and told me that if it stopped, go home. if the levee breaks, you’d know it.

at 3 am that morning, the levee broke.

girlfriend tugged at my sleeve. mommy, my mouth is full of blood! sure enough, it was extremely clear what was happening. we put on our shoes, i grabbed my purse, and off we rode into the night. i ran red lights, i ran over a median at the hospital, and i parked the car in front of the ER. (thank you, G-d, for the parking space.) the triage nurse took her in pretty speedily — i am, pathetically, an experienced ER patient at virginia hospital center, you know; and this was much faster than when i had almost no platelets left in my body — and next thing you know, we are in a bed in the ER. the doctor talked for a minute and left. i looked at girlfriend. suddenly, she vomited up a tremendous amount of blood, more than i had ever seen in one place that was not in a transfusion or donation bag.

i was terrified!  i pulled open the curtain. please help! my daughter is throwing up blood!!

three nurses and the doctor came running to see poor little BC, spewing so much blood that i was terrified that she was going to faint. or worse. off came the clothes. in went the IV (not easily, either.) and soon enough, girlfriend was whisked off to emergency surgery to close things up.

i waited for about an hour until the doctor came out and told me that he’d closed up the leaker. normally, he’d send her home after recovery; but after hearing her recent history, he wanted to keep her for the day to make sure she was on the right track. if she behaved herself, he would send her home around dinner time.

i was frantically calling home on the hospital phone (i left my cell home when i ran out), only to remember that i had brought all the phones upstairs to my room so that ringing would not wake up BS, who desperately needed sleep and who was camping out downstairs. so i just continued to leave messages on his cell and on the home phone voice mail, hoping eventually i’d get a live person. and i did, two hours later. BS came to the hospital at 9, just after he’d gotten jools to school. this was a good thing. this meant that i could finally hit the doctor’s myself, as i was not feeling so great by this time. adrenaline had taken me pretty freaking far, but i didn’t think it was going to last.

because my doctor was booked, i ended up visiting Ye Olde Doc In The Box (aka the urgent care clinic.) lots of people wearing masks and a receptionist telling me that there was already a 90 minute wait were not stellar signs, but this was the only opportunity i was going to get, so i sat and sat with my mask on, trying not to pass out.  when the nurse called me in, she noticed my hospital bracelet, the one i got from earlier in the day. when i explained how the day had started, she was pretty startled. nevertheless, she noted, we need to test you for flu.

for the record, having pointy q-tips shoved hard up both nostrils is not pleasant.

long story short: doctor comes in and tells me that i have type A influenza. but hey, i protested, i had the regular flu shot last month!

well then, you probably have swine flu. but they’re both treated the same way, so does it really matter?

with apologies to gertrude stein: tamiflu is tamiflu is tamiflu.

i give the doc props — he actually called up my immunologist to double-check how i should be handled. they both decided that with my track record of bacterial infections, i should rock the zithromax as well.

so basically, BC and i have both been fighting the flu. poor little girl has been fighting it on top of recuperating from not one, but two surgeries. i am praying my husband and son do not get sick or this house of cards will crumble. as you can imagine, my creativity is the least of it at this moment.

so here’s my favorite song of all time. nothing to feel guilty about. completely unfunny, especially since it’s about a guy who burns down a woman’s house because she doesn’t put out. but still an incredibly beautiful song, even when john gets creepy at the end, as he does in this version.

i know i’ll be feeling better soon, everyone will be better soon, and the world will be right again. in the meantime, everyone wash your freaking hands, cover your freaking mouths, and take care of yourselves!!!

san francisco (be sure to wear flowers in your hair) : part two

Posted in BS (beloved spouse), FAMILY, miracles of science, ms. malaprop on October 13, 2009 by wrekehavoc

i know, i know. i left you in suspense since part one.

you’d be surprised how nice airline people and TSA folks can be. on that friday morning at an undogly hour, when the lady at the northwest counter started to help me check my bag [note to self: you needn’t have bothered. people took bags the size of wisconsin on the plane.], she asked me a simple question: are you okay?

in what may end up being my finest impression of mary tyler moore, i sobbed: noooooooooooooooooooooooooooooooooo!

that lady came over the counter and gave me a hug. when she found out that this was my first solo trip since having kids, she said girl, my son needed a break from me when he was three months old. you need to get out. this will be good for you! so i got my bag checked and a mini-psych session. who knew!

i then dragged my tear-stained, hadn’t-slept-since-tuesday-night-face through the TSA area. i have been lectured endlessly that the humorless people of TSA are not to be trifled with. no jokes, no conversation, nada. in short: do not taunt happy funball. i’m a friendly sorta chick, but lucky for me, i was one stripe short of a flag. i dragged myself through. Mr. TSA Guy stopped me. oh shit, i thought. my very existence will get me flagged for something i have not done. time for the instant replay of everything i have done wrong this week: i’ve put some whites in with darks in the laundry. i’ve ignored a few emails. i probably dropped the f-bomb in front of the kids while swerving my way through DC traffic…

then, a deep voice: are you ok, miss?

a loaded question from a TSA person, right? at least, it was to a sleep-deprived, unhappy flier like me. but somewhere, the answer came:

i miss my kids.

TSA Guy smiled at me. i understand, miss. i smiled back and walked on through. SWEET! score one for crazy mothers everywhere. i did all i had to do, removed various articles of clothing, bought coffee, and got on the plane.

sadly, i couldn’t get a direct flight from DCA to SFO, so i had the pleasure of a three-hour layover in scenic minneapolis. i was pretty freaking happy to have that layover, though, as the plane ride from DCA to the twin cities was nightmarishly turbulent, so much so that the air hosts tried to start beverage service twice and twice failed. i’m not a happy flier to begin with; to ride a plane that feels like it’s a trampoline fest? priceless. (if i ever find that kind tax lawyer who talked to me through the entire experience, i will definitely see that he gets knighted.)

so spending three hours in the minneapolis airport was a godsend to a person desperate to be on the ground. i walked up and down and all around. i bought a powerball ticket, as BS and i have decided that people who win powerball usually live in places which can probably be bought, lock, stock, and barrel, by the dollars garnered by said winning ticket. [read: the deep south, the rural midwest. maybe minneapolis isn’t rural, but it isn’t far from rural places. (yeah, i know, i know. it’s not like the people’s republic of arlington is that far away from rural places…or rural places that are dotted with mcmansions, anyway.)] i got a hand massage — only my right for some reason — in the body shop by a lady who clearly thought i needed a break.  i watched endless CNN coverage of the selection of the olympic city. (as an aside, i was taken aback by the coverage, as the commentator was actually upset — UPSET — when chicago was first dinged off the list. walter cronkite shedding a tear at the news of JFK’s death? definitely defensible. this guy getting actually red-faced over chicago? SERIOUSLY? did this guy spend any time in J-school?)

after starting and finishing war and peace, it was time to board the second plane du jour.

a bigger plane. yay. a lovely older couple flying to SF en route to china beside me. fine. a little late departure? no problem. we’re up, then we’re down.

and i had finally arrived.

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.

rocky raccoon

Posted in miracles of science, ms. malaprop on April 16, 2009 by wrekehavoc

today, on stupid animal tricks…

seriously. i’m beginning to feel like the bill murray character in caddyshack.  i mean, yes, i know there are bigger issues to tackle: the economy, world peace, and why phil spector’s hair is so, so…er…lustrous and distracting.

but this is so all-consuming.

we live right by a park that is filled with wonderful fox, possums, raccoons, deer, and other furry friends. i love my furry friends as much as the next grrl, but i don’t love them in my giant county trash can. there’s a possum in particular who i have actually seen waddling away smugly after lunching in my bin. yesterday was the last straw. we had just discarded the zillion tons of halloween candy my kids had collected. (the standing rule in my house: when easter comes, the halloween candy goes and is replaced by… you guessed it: easter candy.) trash was due to be picked up on wednesday. and the night prior, my furry friends came by (their muddy paw prints are all over the plastic can), opened up the bin, and apparently had a sugarfest so wild, i bet they ended up in little diabetic comas. (for those interested, the animals apparently like reeses’ peanut butter cups and little chocolate bars over warheads.)

besides the obvious point that i don’t like the thought of wild animals eating things that could make them ill, i simply want to get these guys out of my trash bin. (usually, they just feast inside the bin; but tuesday night, they literally left a congo-line trail of candy wrappers in the street, down the driveway, and probably in my neighbor’s yard.)

i have tried attaching bungee cords around the bin. they get in. i have put a seriously heavy concrete block on top of the bin; they topple it. i don’t know what the heck these critters do in their spare time (pump iron?) but they are s t r o n g. i don’t in truth have the ability to store the trash in my garage;  and i would prefer not to keep the trash inside the house.

i’m channelling the spirit of bill murray’s character these days:

my enemy is a varmint. and a varmint will never quit.

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.

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.