Archive for the CVID 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.


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.

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.


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.


Posted in bad '70s music, BC (beloved child the elder), BS (beloved spouse), CVID, FAMILY, guilty pleasure monday!, health, jools (also a beloved child), miracles of science, ms. malaprop, music, political animal on December 31, 2008 by wrekehavoc

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

happy new year!

guilty pleasure monday: message to my girl (split enz)

Posted in BC (beloved child the elder), CVID, FAMILY, guilty pleasure monday!, health, jools (also a beloved child), music on December 29, 2008 by wrekehavoc

this one’s late. and for a good reason.

we just returned from a trip to NJ to see family and friends during the holiday. it was a great visit; but when we woke up in the hotel this morning, BC started experiencing barf-fest 2008. the poor darling;  she barfed all the four hours home; she barfed while home; she’s just starting a teeny bit of ginger ale right now, which i expect will come back up shortly.

this is just not the best way to have a holiday.

whenever girlfriend feels sick — which is fairly frequent if you count her breathing issues and all the tough luck she has had the past few months — i always feel terrible. as a mom, i want to wave a magic wand and make it all better. that’s my job as a mom, you see. and of course, there are so many, many things i will not be able to make better.

one of the things i can’t make better is the fact that i get sick. when i became seriously ill two years ago, the one who really bore the brunt of it (besides BS, of course, who had to do everything) was girlfriend. hellboy was so little that, while he missed me when i was in the hospital, he truly didn’t understand as much about what was going down. girlfriend did. and there was a period of time thereafter where, whenever i went to a doctor, i ended up in the ER. it may take years, if not forever, for girlfriend to not freak out whenever i have a doctor’s appointment — which, as many of you know, is frequent enough. it makes me sad that i am actually the cause of her pain.

so  whenever i hear message to my girl, i think about all the things i wish i could do for madame. i want so much to be less self-involved, but being so ill has required that i actually stop being selfless and start taking care of myself. it’s a tough balance, believe it or not.

but then i hear these lyrics, and everything becomes clear:

No more empty self-possession
Vision swept under the mat
It’s no new years resolution
It’s more than that

No there’s nothing quite as real
As a touch of your sweet hand
I can’t spend the rest of my life
Buried in the sand

i have my new years resolutions all ready. many involve things i need to do to make myself healthier. and i have to remind myself it’s okay to do them — i need to do that in order to be there for my family.

but i will still need to take the time to be there during the journey, too.

happy new year to everyone!



Posted in CVID, health, ms. malaprop on October 22, 2008 by wrekehavoc

recently, there has been a lot of discussion on a moms list i’m on about FluMist — whether it’s better to get a flu shot or let your older-than-two year old sniff up that misty stuff. as a mom who has a daughter who wildly hates shots, this is something near and dear to my heart. (in fact, i’m embarrassed to state that BC has not had a flu shot yet this year, thanks to her performance when she hid under a desk. it took two nurses, a doctor, and me to get her out. but i’m going to get her there.)

my kids cannot have Flu Mist, and it’s all my fault. see, Flu Mist is a live vaccine. you shed that yummy influenza germy goodness once you get it, and if you’re in the vicinity of a person who has a weakened immune system, you can make them deathly ill. so it’s shots for them, all the way. (we also have fun thinking about other live shots. i just try to make sure they get it right after i’ve had my IVig so that i have maximum infection fighting power in me, should i get sick. don’t know if it would actually work in reality, but it’s the only thing i can do. those kids are not going without their shots. period.)

i do get nervous about FluMist, though — there are a lot of grandmas and grandpas, for example, who may be exposed to their recently-misted grandkids. and they may get really sick because of it. and we’re not talking just a simple cough or sniffle.

still, at least i guess they’re getting vaccinated. it just reminds me of the situation with antibacterial soap and gel: someone devised it, thinking it will be an exceptionally easy way to kill even more germs than regular soap. what it does now is make those bacteria stronger and more antibiotic-resistant. but progress is all about making things easier for us, and this soap and gel was supposed to be emblematic of progress. and it is: progress gone awry. and now, we’re so damned frightened of making our kids have a few seconds of pain that we crave another solution, even if it might mean a public health problem for others.

i wonder whether ours is the first generation to wuss out over shots, as a friend put it.  we do not remember the polio epidemic; we cannot recall smallpox. we don’t know how horrible certain illnesses can be. heaven forbid our children have moments of pain, as if the pain is worse than the medical issue it’s meant to stave off. and some vaccines aren’t perfect; people sometimes get chickenpox even after receiving the vaccine. but the vaccines help more than they don’t; and i feel very strongly about immunizations.

that’s why i am sick to my stomach about a homeschooling network that exists specifically to homeschool because they do not want to give their children immunizations. i find this repugnant. while i have learned a lot about homeschooling since shooting my mouth off awhile back; and while i have a new respect for some who have chosen that path; this, to me, this particular thread is an outrage. this is not about education; this is a public health issue. to me, it’s tantamount to child abuse: these kids are sitting ducks for measles, polio, and other horrible illnesses. and no, it’s not just a week in bed and they’re better again, people.

and what will you do then — pray that they get better? exhaust your healthcare (if you have it) or else exhaust tax dollars (if you don’t)? all because you didn’t want them to get a shot?

i get really sick and tired about parental paranoia over the government. our government isn’t perfect. duh. but people talk about federal agencies as if they are composed entirely of automotons. guess what, folks: government agencies have just as many mindless people as you do in your office. there are people who care, and people who don’t. but mostly, and especially in the health sector, they do. people stake their careers on getting the info right. they know they have other peoples’ lives on the line. they’re not advocating immunizations because they think it’s a fun thing to do: they do it because they think it’s the right thing to do. and not just for your child — they’re thinking more globally. that’s what public health is all about.

so just as i will get extremely pissed at parents who let their babies swim in pools without plastic pants on (they put them in huggies swimmers and then marvel that their poop gets through, closing the pool down for fear of an E coli experience), i get extremely pissed at the parents who don’t immunize. oh, you say, you can’t trust the government. you don’t want the state telling you what to do with the precious children you’ve been entrusted.

i wonder who the hell entrusted you with those babes. if it was G-d, She must have been having a day off and you lucked out and squeezed through anyway.

don’t fear the reaper

Posted in BC (beloved child the elder), CVID, FAMILY, health, jools (also a beloved child) on September 19, 2008 by wrekehavoc

we have a sad little trend happening here in the wreke house: kids terrified that their mom (read: moi) is going to die.

my kids have been through an emotional mill. they remember a time when i went to the emergency room and didn’t emerge for a few days. they visited and saw a mom who was covered, head to toe, in purple blotches, with needles in her arms. (the perfect visual: my BFF jaxx came in, took one look at me, and announced: you look like a crack whore.) then, a day after i was released, i was back in the hospital for over a week. my recovery from ITP took months (and i’m still in remission — yay, me!), and during that time, i learned how each handles this stress.

while i was in the hospital, BC (ever her mother’s daughter) apparently cried every single day at school. her first grade teachers and the guidance counselor were absolutely amazing — they took her under their wings, they gave her TLC, and they let her know that they were in her corner. once i came home, she settled down a bit.

jools, on the other hand, a sturdy almost-three-year old at the time, was fine at school. once i returned from the hospital, though, he wanted to be with me at all times. at night, he didn’t want to go to bed for fear i would not be there in the morning.

the hardest thing about being a parent with a serious illness may very well be coping with, and for, your children. that peaceful, calm moment of childhood is ripped away from your children suddenly; and in it’s stead lies a terrifying potential reality of extreme loss. it never really leaves, either: my mother’s first bout with breast cancer happened when i was 15. she’s always very up-front with me about things, and yet, i still get nervous every time she goes to a doctor. and i’m a grown-up.

it stands to reason, then, that every time something seriously medical is on the horizon, my kids prepare for the worst. and, in short, i have to get my gallbladder out. and suddenly, everyone is afraid. BC isn’t sleeping; her upset makes her coughing so much worse. jools is randomly noting things, such as: “when you die, i want to give you my star (that he made in his kindergarten class earlier in the week.)” it is enough to make me wonder whether they know something i do not.

but, to paraphrase mark twain, the rumors of my impending death are greatly exaggerated.

sure, any operation is a little riskier for us CVID folks, as any infection is not something we need. but this is my gallbladder. it’s not brain surgery. it will go well; i’m not too terribly concerned. but it doesn’t matter how many times i tell my kids that so many of their loved ones have had this very same operation. girlfriend and mr. man are on the alert.

i have to get past my own angst here and do whatever i can to make them feel more comfortable. short of constantly reassuring them, though, i don’t know what else to do.

it crushes me to know that i am the reason they’re so distressed.