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i'm so tired
Apr 14th, 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
Feb 18th, 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.

think
Dec 31st, 2008 by wrekehavoc

happy new year, everyone. i present to you exhibit a: a poll. enjoy it. i know i will.

[polldaddy poll=1234381]

happy new year!

silent night
Dec 10th, 2008 by wrekehavoc

this is for all the people who don’t feel very shiny or happy this time of year.

december is a whirlwind kind of month around here. we have BC’s birthday. we have chanukah. and we have christmas. it’s a crazybusy time. i never remember whether i’ve gotten the whole presents thing right. BS usually has one full day of cursing out the christmas tree lights (because apparently, there is always one bad apple that spoils the whole bunch.) the kids are wound up on cookies and frosting and dreams of what presents will be coming around for them. i know we should be feeling the joy, but there are moments…

see, there’s this tacit assumption that during holiday time, everyone should be feeling happy and peppy and bursting with love.  it sickens me, to be honest, in it’s self-centeredness.  if you’re depressed, well, it seems like the world around you is having a great big party and you have not been invited. (n’yeah n’yeah.) and even though people will often try to involve you and get you in the spirit so to speak, they may become angry when you simply don’t have it in you.

and then you’re sad and rejected. goody.

depression is very real. having experienced it myself after giving birth to BC, i can honestly tell you that you feel like you have dug yourself a deep hole and nothing will pull you out of it. fortunately, it’s a bit less stigmatized than it once was.  if you’re lucky, you might either know you need help, or perhaps someone close to you will suggest it. you might needs meds; you might need to talk to someone. hell, you might need both. and if you don’t have health insurance, call your local health department, as they may be able to let you know how you can get help you can afford.

but please. get help.  no one has to be happy. but no one should have to suffer this sort of pain, either.

good day sunshine
Dec 2nd, 2008 by wrekehavoc

madame,

10 years ago today, i was in quite a predicament. i was pregnant beyond all recognition with a little person: you, my darlin’, a challenge even before you entered the big world. after an ultrasound every month for the previous 9 months (due to low amniotic fluid), you just didn’t want to let me see whether you were a girl or boy. (i’ll be darned if one time, you actually held your tiny hands in front of your naughty bits so we couldn’t see.)

but i knew.

you didn’t seem to want to move a lot at first; and since i had read all those stupid baby books that all first-time moms read when they’re expecting, i was suitably nervous — were you okay in there? then, when i was resting one day, six months along, watching some VH1 show on the Beach Boys, you started suddenly to kick the living crap out of me every time the Beach Boys sang. and yes, daddy went out and bought a Beach Boys CD to test out the theory: yes, every time you heard the Beach Boys, you got really, really excited. (so much for my lyin’ in bed just like brian wilson did.)

so there i was, very pregnant. and my blood pressure, normally picture-perfect, was zooming into the stratosphere. on december 1st, when i showed up to the OB-GYN practice, the doctor on call put you and me on a monitor, and sent me home. come back tomorrow, she said. if your blood pressure is still so high, we”ll bring you back in the evening. see, dr. loewith is solo tomorrow, so we’ll let her get through her day and then induce you in the evening after she’s less busy.

so enter december 2. i had assured daddy that he could bring the car into the shop and take the bus and metro downtown to work; the doctor the day before told me that they’d make me wait until the evening and then put the proverbial jumper cables on to get you moving into this world. enter the indomitable dr. loewith: she put us on the monitor again, told me that you didn’t need to be in me anymore, and i surely didn’t need you in me anymore, either. i should waddle my wisconsin-sized ass across the street and admit myself: it was time to have a baby.

but your partner dr. X  told me that i should have to wait until you’re less busy since you’re on your own today, i explained to her.

pffft, she replied. that’s stupid. who cares how busy i am – if you need to go in, you need to go in! (i will point out to you, darlin’, that the other dr. somehow left the practice soon afterwards. and oh, how i miss the refreshing candor of dr. loewith and wish she hadn’t moved west.)

so, i waddled my gigantor self across the street, then up to the third floor of the hospital. and i made a phone call. BC, i would have paid money to see the look on your father’s face when i told him that i was, in fact, having a baby. now. yes, right now. and yes, i knew that the car was in the shop, and i knew you had to figure out how the hell you are going to get to the hospital after taking a bus to the train and the train to a train and then walking to work. but your daddy, in typical daddy fashion, just. figured. it. out.

that’s just what he does best.

so at some point, daddy showed up, huffing and puffing. i know he was there in time for my epidural; i know because something went wrong when the doctor first put the needle in my back and a wave of weirdness went straight down my leg for a split second. (your daddy, man that he is, never explained to me what happened. well, not until i was about to get my epidural when i was in labor with your brother, that is. honey, he pointed out, the needle bent in your bone. you broke the needle.) (yes, ladies. this is exactly what you want to hear when you’re about to be stuck again in a terribly sensitive place, a place where if something goes wrong, you don’t walk. ever.) but then, it was working, and i was working with it. ah, childbirth… a walk in the park, right? oh, it hurts, but i can manage it, i’m a pro, i’m…

huh? OW!

guess what, sweetie? mommy goes through epidurals like your brother goes through slurpees. i needed my fix. and i needed it now. i tried to talk to daddy in my sweetest voice ever.

honey, can you please tell the nurse i need more epidural?

daddy, who had been there with me throughout the lamaze classes; who had suffered through all sorts of unmentionable baby information sessions, tried to talk the supportive patter he had learned so well:

honey, he said, try to breathe through it.

now, BC, you know i am not a violent person. but trust me, darling, that when you are in the throes of labor pains, you may end up swearing like a longshoreman. you may end up making promises, insane promises, just to make the pain go away. you may even pledge to vote republican; it makes your head spin how it feels. i am telling you this because i need you to understand this next bit, something i have never before and never again done. you need to know that i was out of my head in agony. and your father’s supportive alan alda jibberjabber made me think he didn’t really understand me. and sister, i needed to be understood. right there, right then. i grabbed hold of your daddy’s nice clean oxford shirt, right at the collar. i pulled him close to me so that he could hear me. i looked him in the eye. and i uttered as clearly as i possibly could:

you. fucking. breathe. through. it. get. me. the. fucking. nurse. NOW!

your father, looking like a deer in the headlights of a speeding HumVee, immediately snapped out of his nice-guy stupor and hopped to it more quickly than i have seen him do anything in his life. voila! my epidural arrived. and evil exorcist mommy receded and happy, halcyon mommy returned.

in fact, dr. loewith nearly missed you arriving; i was chillin’ and coolin’ like a snowman so much, i had no idea you were making your way down the highway. whoa, stop pushing! she cried. huh? i’m pushing? oh, so that’s what i’m doing!

well, sister, i had literally 10 minutes of pushing that i knew about before you arrived. and there you were, all red and screaming your little head off. i was thrilled beyond belief to see you, to meet you. (you know i cried. that’s what i always do, major boohoo that i am. i’m happy: i cry. i’m sad: i cry. i’m hungry: i… wait. that’s what YOU did back then.) i counted your fingers and toes: pinky, you were as perfect as the 4th of july.  we snuggled before you were whisked away to be cleaned and tested and probably grilled on your involvement in the disappearance of jimmy hoffa.

because at that time, babies had been switched at the university of virginia hospital, i told your father that under no circumstances should he take his eyes off of you.

true to his word. he never did.

he still hasn’t.

all’s this to say that 10 years ago today, you changed my life forever. you made me a mom. and while every day has not been a shiny, happy cakewalk, i would not trade you for all the tea in china (in spite of what you might think some days.) you manage to smile, no matter what. which makes me smile, no matter what. you are the sunniest, the funniest, and the bunniest. i love you to all the pink, purple, and rainbow moons and stars.

happy birthday, Beloved Child.

a rare moment asleep.

a rare moment asleep.

all those years ago
Oct 1st, 2008 by wrekehavoc

when i was growing up, there was a boy in my class. he was always in my class. and i was always behind him, as his last name started sta and mine was ste, from elementary school through high school. we were both precociously smart, always doing the extra work since this was the world before gifted and talented classes.

i couldn’t abide him back in the day. (i suspect it was mutual, as i wasn’t exactly the human cakewalk then.) it wasn’t really personal; frankly, i couldn’t abide most boys at school back in the day. i think it was one of those ewww, boys have cooties sort of life decisions. and after high school, i never heard a whit of him again. i moved away from my hometown, and this, of course, was the land before facebook and twitter and blogs. but now, he has found me. and you know what?

i’m so very glad he found me: he’s funny as hell.

i say this because recently, i joined facebook. and in an instant, i found — or was found by — all these people i knew 25 years ago. its unbelievable that people i’ve wondered about for years now can simply IM me any time i’m on FB. and it’s a hoot re-meeting people as grownups.

its a little weird at times, admittedly.

but that being said, it is also rather healing. a girl i was best friends with my junior and into-senior years of high school — she found me. i was furious with her when she went after the only boy i liked. and we stopped talking; in truth, i probably simply stopped talking to her.

and what a shame. because when we started talking again, it was like we had only talked last tuesday. it’s nice to walk down memory lane with people who remember you as you were, but only a few people can pick up from there and start to appreciate you as you are now. and she could, and i could, and i wondered about all those years i had squandered in a pig-headed moment.

ah well. it’s nice to look forward with people who knew you when you were a bit more backward.

i'm so tired
Sep 25th, 2008 by wrekehavoc

yesterday, i had the pleasure of sitting beside two mothers, both with babies. one was armed with weisbluth’s healthy sleep habits, happy child. the two began to talk about sleep training. i began to smile, thinking about the joys of sleep training (or lack thereof) my kids.

in order to fully prepare yourself for sleep training, you ought to first start by watching a 72-hour marathon of something truly awful, never once allowing yourself to rest. (i recommend something like saved by the bell. or caillou. or, perhaps, jerry springer?) intermittently, you need to start a painful discussion with your partner every six hours or so, just so that you can get yourself swirled into an emotional fever pitch. fight about money? your in-laws? your politics? his wandering eye? whatever gets you truly exhausted and exasperated — that’s your topic. also, whack yourself in the head a few times. sporadically, of course, and not enough to cause brain damage. maybe you shouldn’t eat much, either, during this time.

once you’ve completed torture time, get ready to rumble.

seriously, i thought i was going to lose my mind when BC was a baby. nevermind that she had reflux, was colicky, did not gain weight well, and was often sick. she never. ever. slept. my mother would try to make me feel better: she’s always awake because she’s so smart — she’s curious about the world. [note to self: must remember this line when BC’s first child never sleeps.] but all the books i read said that a child naps a certain number of hours, a child goes to bed for certain hours.

BC never did either.

i would start the nightly walk with BC once the colic started. i sang the entire Beatles repertoire, i sang plenty of the crosby, stills, nash catalog, and of course, i sang her nightly bedtime song:

sometimes, i’d get tricky and sing it this way:

http://www.youtube.com/watch?v=knygIbt2D-8

the girl loved my singing, but she’d never settle down to sleep. i’d rock her, she’d nap, i’d put her down, she’d wake up screaming. i had to feed her every time she wanted food — she was a poor weight gainer, so i was shoving a bottle at her every time i could, all hours, all the time. it was a dance that led her to poor sleep habits for awhile and led me to a horrific case of shingles.

girlfriend didn’t have a full night of sleep until she was 18 months old.

when jools started down that path, there was no way on Dog’s Green Earth we were reliving that fun. see, i am from the rock the child to sleep attachment parenting front but my husband is from the shut the door and let him scream until next tuesday front. (not to be confused with those women from venus and men from mars fronts.) in short, we could not agree.

there was a time when i’d laugh at the idea of paying for someone to help you learn parenting skills. i laugh no more. the woman who saved our sleep, our marriage, our sanity, cost us very little compared to what she gave us: she got BS and me on the same page about sleep training (read: gentle ferberization), and she got jools sleeping perfectly in no time. she gave us a plan; we followed it. and. it. worked.

i have friends who are serious attachment parenting people; and if that works for them, i am happy. live and let live. i think different kids have different temperaments, and so what works for one child may not work for them all. for me? well, i was always afraid i would roll over on a baby if i co-slept. i was that tired. and the funny thing that i notice about some of my friends who let the kids sleep in their rooms — they have a hell of a time getting their kids out of their bedrooms and into their own rooms later on.

so now, our sleep is interrupted more by other things: sick kids, kids who fear the impending death of their mother, angst. but we turn on our nighttime music, cuddle up with whatever (or whoever) is near, and attempt to re-enter that magical realm of morpheus.

so, as i listened to the mothers — one, a mother of a three-month old, and the other, a mother of a toddler and a newborn — talk about sleep theories, i chuckled to myself.

been there. done that. and ain’t going back.

punky's dilemma
Aug 25th, 2008 by wrekehavoc

school is about to start, and i’m wrestling with my kids’ lunchtime situations, both from a nutritional and an environmental perspective. you can experience my angst on this topic over at the green parent, where i’m guest blogging today. go check it out and share your solutions, people.

i sure need them.

and to those of you who’ve gotten here via the awesome green parent blog, welcome. i promise not to curse in this post.

after that, all bets are off. (if you read back at my ongoing, so-called vacation from h-e-double-toothpicks, you may understand why.)

all mixed up
Aug 20th, 2008 by wrekehavoc

i was supposed to be on an amtrak train today, heading south to orlando, destination: disney. instead, i am home. amtrak cancelled my train due to a storm called faye that never turned into a hurricane.

it’s all mixed up.

first, amtrak never actually contacted us to tell us. if i hadn’t been a person who follows everything on the web, i would actually be travelling to lorton right now, getting ready to board a train on a track to nowhere. then, when we called amtrak the first time, they told us that they were canceling both legs of our train trip. if i wanted my return trip, i would need to rebook — at a higher price. at that point in time, we were contemplating driving down and taking the train back, so to say we were pissed about that would be the understatement of the century. i wrote a nastygram to amtrak. to their credit, an agent called me last night at 10:30 p.m. to tell me that they’d hang on to my return trip if i let them know by 4 p.m. wednesday.

in reality, we are not in the right mind to drive two days for our trip. i think there’s a certain level of mental prep that one does for such an experience, and we were simply not there. and, as the next train down with available seating doesn’t leave until monday, this dog wasn’t huntin’.

meanwhile, The Mouse doesn’t care that i have no way of coming to disney; they want $200 cancellation fee, thank-you-very-much. unless there is a hurricane warning declared, disney is open and expects your ass on the monorail.

oh. and there’s the little matter of two children who were completely pumped for their trip to disneyworld. they have been trying to be little troopers, especially since we told them we’re going to reschedule this trip if it’s the last thing we do; but jeez louise, this situation continues to go from dumb to dumber. only one or two highlights, as there were actually so many from which to choose:

a) when we call to officially cancel the amtrak train, an extremely nasty, sharp-tongued ticket agent informed BS that he was getting $400 back. uh, come again? those tix cost WAY more than $400. he asked her why, and she began yelling a barrage of nastiness at him. (she should thank her lucky stars that i was not on the phone. at that point, i was in no mood for anyone messing with me, my family, or anybody.) when BS asked for a supervisor, she clearly put on her colleague. nevermind; the colleague was nice and even honored the old price for the rescheduled trip.

b) when rescheduling disney, the confirmation came back — with DIFFERENT DATES AT THE WRONG HOTEL. he got on the phone, and something apparently had gone kerflooey. someone went into the database and fixed things; we’re waiting for the emailed confirmation to show that things have been put right.

there’s so much more i could write, but suffice to say, i am extremely disappointed with Amtrak and Disney. i am shocked at how we’ve been treated. things better be better the next time or else i guess our days of patronizing either enterprise are limited.

lessons learned:

  • sometimes travel insurance (which we had) is completely irrelevant
  • never travel to florida in august
  • we are actually capable of making lemonade out of lemons

re: the last bit: we will make our own fun. just closer to home. i’ll keep blogging; i’ll just be a little sporadic, as my buddy maren likes to say. see, i have these three other people here, and i think i’m supposed to pay attention to them. so talk amongst yourselves. i’ll still give a guilty pleasure monday next week; how could i not? and maybe i’ll type another thing or two.

but in short: i need a break from all this vacation crap.

no rain
Aug 6th, 2008 by wrekehavoc

a sort of continuation of yesterday’s post. because you know you want to hear me whine that. much. more. but fear not. i promise; today is a happy post. a shiny, happy post. a post with a happy buzz.

a post with no rain.

somedays, i feel like a professional patient. i have been to a pulmonologist; a gastroenterologist; a cardiologist; a dermatologist; a hematologist/oncologist; an infectious diseases doctor; a gynecologist (well, once a year, whether i like it or not); an orthopedist; and my regular, run-of-the-mill primary care dude… and my dentist twice a year, of course. and that’s just in the past year. and that’s just for me. not to mention the doc-in-the-box i hit up a few weeks ago when my lymph nodes went kerflooey (and my brother-the-doctor, alias BTD, told me to stop taking antibiotics and suck it up… which of course was the correct thing to do once i found i didn’t have strep. lord, i hate when he’s right.)

i spend a fair amount of time with doctors, and not just because i’m related to one, either. most treat me well. some treat me with complete disrespect. i have learned to appreciate many of them and the help they give me. and i have learned, over time, that very few of them really know much about CVID. they know pieces of the elephant, but they’ve never actually seen the elephant. (l’elephant, c’est moi?) (BTD tells me that in his years of practice, it would have never occurred to him to learn much about CVID until he actually had to.) i spend time educating them in a way that is hopefully not pedantic. (my brother larry says i am often pedantic. i try to use the word pedantic in a sentence as much as possible, just to show him i am not pedantic. phooey on you-ey, big brother 😉

seriously, as much as i like sharing what i know with doctors (such as explaining what my IgG, IgA, and IgM numbers mean), it does get exhausting, especially since i would appreciate more guidance than what i can get from the internet. i often marvel at the fact that if BTD wasn’t: a) a doctor, and b) a person who understands what CVID is, i would be fumbling in the dark, looking for that damn pachyderm myself.

so it was with intense pleasure that i met with the immunologist today. i hadn’t seen him since november 2006, when i decided to plunge into a semi-denial state and get a second opinion, an opinion which, of course, corresponded perfectly with his own. sure, i hate his parking lot in bethesda. but he is the best. la creme de la creme. he knows his stuff. he’s up on current research. he listens. (he even let me give him exercise pointers since he, too, just had arthroscopic knee surgery.)

and he can advise.

no, i still have CVID, and i’ll probably have CVID for the remainder of my hopefully plentiful days. i only have to have chest and sinus scans if i appear to be having trouble in those areas (and not mandatorily every year like other people have guessed. it is like he channeled my brother.) yes, he agrees with BTD that getting breakdowns of my IgG groups is not necessary (damn, i hate when my brother is right.) and yes, he will help me steer the train. come back in six months unless i have a problem or concern.

and keep those IVs of gammaglobulin flowin’.

finally. it’s like i found someone besides my brother who is familiar with my tribe of bees.


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