it’s official: i have become a suburban cliché.

yesterday, the kids were off from school because it’s election day and apparently, the schools haven’t figured out how to run polls and a school day simultaneously.  (okay, so i kid. a little.) but considering that they will be off again friday for veterans day, i wish they had decided instead to take thursday off and make it a big old weekend where we could actually go somewhere. but no, instead, we have tuesday and friday off, and our half-day wednesday is now a full-day of school for one day only, thus insuring chaos with the boy’s ability to complete his homework, which comes before everything else (including hebrew school, which happens about 45 minutes after he will get home from school.)

but i’m not bitter.

so anyway, back to yesterday. my relaxing day home with the kids, the day after my intensely delightful IVIg session where i was poked 13 times. the one where i returned to a house on the verge of chaos and a body full of type two reaction to the Ig. the girl had wanted to sleep over a friend’s house, but with all her plans for tuesday brewing, i could not add yet another thing to the plate. and even though i may sound like a spoilsport, i really didn’t think a sleepover with several other girls on a monday night could end well. so she stayed home, not complaining about her mean-ass mom. (the girl is very smart.)

i woke up with my IVIg headache, the one that lasts until it decides it’s time to take up residence in someone else’s head. it’s a dull sort of headache, not like a migraine. but it’s there, and it’s heavy, and it feels like someone placed some very large bees in your head. you can function, but the pain in your head makes you a bit grumpy. the three of us got it together and dropped the girl at play practice at 9:30. the boy and i then were off to target, where i hoped to do some minimal food shopping while getting the boy to write down his holiday gift list while walking through the toy aisle. throw in a return plus a few other things needed that would be unavailable in a grocery and voila! tar-jzhee is the place.

two hours later, after meeting one of jools’ friends there and arranging a playdate for 2:30, we put away groceries; i fed the boy; and then i told him he should go play outside. mommy still had a deadline for work. so i worked, met my deadline, and then took the boy over to his playdate. then, at 3, i had to pick the girl up. the girl had gone from play practice to a friend’s house, where she and her friend were completing their science experiment for the school science fair.  after dropping the boy off, i sneaked off to… vote. and then, off to BC’s friend’s house. woe is me; while i was out driving the boy, i missed the call that said that BC’s friend’s mom could drop her home.

so i found myself on the friend’s porch at 2: 50something, and no one is answering the friend’s door. of course, the minivan is in the driveway and is open, so someone must be home. but the sound of droning leafblowers (far less pleasant than the hissing of summer lawns, i assure you) is making those bees in my head angrier and angrier, push harder and harder.  i pound on the door, figuring that the doorbell must be broken and hoping that someone can hear me over the lawn men. eventually, BC’s friend comes to the door, smiling. and i hear BC’s voice trailing from their kitchen mooo-ooom, didn’t you get my message? J’s mom is going to take me hoooome.

uh, nope.

so after they clean up their experiment, i drive her home to get a quick change, as she’s off to girl scouts at 3:30. i run her over there and run home, thinking a glass of water or a coffee or SOMETHING might pacify those damn bees. and after realizing it’s just a little after 4, i remember that my eye medicine has been languishing at Walgreen’s since Friday. i decide to run to the giant to get cornbread mix (to go with the chili i snuck into the slow cooker at about 2), do the drive-thru pharmacy thang, and then rush over to jools’ playdate’s home, where he should be picked up between 4:30 and 5. good, i think, i will get there about 4:45 and life will be awesome.

only too bad for me. my doctor has changed the prescription, which doesn’t make my life happier in insurance land. i am sitting in the drive-thru line for literally 20 minutes. tick tock tick tock. a car that is behind me in line gives up and drives away. (i can’t move aside or else i would. i have been that car.) finally, it is 4:56, and i pray that BS will pick up the phone. he does. and he races over to pick up the boy.

my prescription straightened out, i race over to the boy’s playdate’s house to apologize for my lateness. when someone tells me pickup is between 4:30 and 5, i aim for the middle time. i am not a mom who leaves her kid til the last second. and now, i have that rep.

but, no time to stop. i must pick the girl up from girl scouts at 5:30. i stop at home for another drink of water, another chance that the bees might be appeased. but they keep buzzing. and i go.

i bake cornbread, i make dinner, we eat. i do dishes, i finish the laundry i had started, and i am done. i take a few motrin, and the bees go away.

until this morning. the girl has called from school. she has forgotten her lunch.

i’m back in the driver’s seat.

that noise would be ouch!

today’s post brought to you by the letter b for benadryl. sometimes, i think benadryl is what stands between me and oblivion.  i took some last night and i’m pretty sure i’ll have a better today for it.

yesterday, i had my monthly infusion of IVIg. (for those of you unfamiliar with why i do this, this is how it all started and this is pretty much my situation.  yes, i’m still having more fun with common variable immunodeficiency than humans ought to be allowed, though i am in better health than a lot of people who have it.  the new nurse was very nice, but for reasons i don’t understand, she didn’t run my line with the pump. it took several tries to get a vein working for me (in my hand, which i hate); and it wouldn’t run very fast. after a time, the line blew.

to make a long story short, i was stuck 13 times yesterday, a new record, including two times in each hand and three times by a doctor. this doctor was the first one who actually didn’t do a bad job, though if ever you are in a situation where the doctor wants to try to put in your infusion, you should generally run fast in the other direction.  unless your doctor was recently in residency, he/she hasn’t put in an IV probably in decades. (yeah, you don’t have to thank me.)

eight hours later, i was finally finished, though not without the nurse using heparin to flush out my line four times because it stopped. it was a miserable day. i felt like crap. and gues what — i broke out in hives on my hips and legs.

time for two things: 1) a call to my BTD, who told me to take more motrin next time and that it was likely just a reaction to the Ig, and 2) time to hit the benadryl.

feeling better today, but have the usual dull headache happening. i should be grateful – i get the medicine, i do pretty well, and life is pretty good.

but yesterday left me wishing someone could make everything  all better. for keeps.

…because freddy mercury should be singing bohemian rhapsody and not elton john or axel rose.

if ignorance is a pet peeve of mine, then you can bet that ignorance about HIV and AIDS goes far, far beyond mere annoyance in my book. as i have known plenty of people who lived and died from the HIV virus — and I have a friend who continues to live with AIDS, probably far beyond what doctors predicted — i have been gobsmacked by the stupidity people have shown toward those with HIV, as if you might catch it by simply breathing the same air.  in the old office where i used to get my monthly IVIG, i had less fear about being around AIDS patients than i did with someone with something actually infectious. it wasn’t like i was going to be having sex while getting my IV — not that i could even figure out how if i even wanted to, of course. (and i’m quite sure none of those patients were interested in me, anyway.)

i can’t believe we’ve hit world aids day 2010 and there still isn’t a cure. there are a lot of advances, thanks to groups like amfAR. still, funding is an issue — i know, where isn’t funding an issue these days. and you might wonder why i care about this disease; i don’t exactly fit the profile of someone who might be engaging in behaviors that might lead to trouble (although no one is ever truly perfectly immune from anything, i believe.) i guess somewhere in the back of my bear-brain, i know that i have a condition where so little is known. there’s no primary immunodeficiency day out there; we don’t have celebrities talking about what it’s like to have a crap immune system. but i feel a kinship with HIV/AIDS folks — they, too, have crap immune systems. theirs is an acquired situation, whereas mine was something i was simply born with (apparently.)

maybe it’s a slightly selfish thing — i figure that maybe, if someone out there figures out how to help those folks, that maybe someday, that research will possibly benefit my children and grandchildren. after all, someone’s going to get my genes.

so i hope you’ll join me in commemorating world aids day 2010. i hope i see a day in my lifetime when they no longer have this commemoration because the disease has a remedy.

and then maybe, we won’t lose people like freddy mercury just because he loved often but possibly not always so well.

you know the type.

so i’ve just returned from my monthly IV of gammaglobulin goodness, a ritual i endure every four weeks for the rest of my life. it’s not so bad — the ladies who take care of me are amazingly wonderful and endure ME relatively well, considering i have to go through seven bottles over the course of about 5 or 6 hours (on a good day) with veins like keith richards’. today, i blew first IV connection in my right arm thanks to having thick blood that apparently clotted, leaving the IVIG nowhere to go but backwards. poke number two in the left arm worked for a short while until something ouchy and stingy happened. luckily, by this time, i had only one bottle left, so the lady i annoy the most (and who i love to pieces) put in a butterfly on another site in my right arm and i did not move my arm for about 30 minutes. no biggie.

in fact, i was able to run to the nearby wegman’s, which was cool because jools had run out of his favorite Phillies Graham Slam ice cream, and wegmans is the only place around here that sells it.  so, since i was finished at two, i skedaddled over to the wegman’s before starting the 40 minute+ drive home.  since it was 85 degrees out, i decided to park in the “underground” lot. i zipped over to take the stairs, but as the elevator doors opened right up in front of me, i figured what the hell — i’ll climb in since it’s going up anyway.

as the doors were about nearly closed, i heard a voice shriek: hold that elevator! my pavlovian response, of course, was to stick my hand on the door and get the sensors to realize the doors shouldn’t shut. (why didn’t i press a button, you wonder? well, you need a PhD to read the actual buttons on that particular elevator; for a machine that literally only goes between two floors, it’s a bit unreal.) in walks a tall, poodley-haired suburban blonde lady and her equally tall, late teen/early 20s daughter. thanks, she said. i smiled politely, nodded at her, and did what all self-respecting people do on an elevator; i moved to the far corner.  i hurt my foot this morning she announced, perhaps to the daughter, who didn’t say anything. yes, i hurt my foot this morning, she repeated louder, clearly looking to justify why she had made a person stop an elevator that was nearly closed so that she could ride. i looked at her, wondering what exactly she wanted me to do — perhaps break out my medical kit?

then, she looked at my two bandaged arms. in a voice usually reserved for naughty children who have just pushed someone else’s child down off a cliff — or maybe her bichon frise just made a little pooh on your lawn, she exclaimed, “Uh oh! Uh oh!”

realizing that she had not, in fact, turned into a teletubby, i knew i was the reason for the uh ohs. for that split second, i wanted to say well, i was shooting up my smack today, but i missed. shit could happen to anyone, right?

but i didn’t. somehow, though, i knew she was demanding an explanation for bandaged arms. and as the nice girl i forever am, i had to give one. i had some IVs in my arms today.

Uh oh!

am i riding this elevator with rainman’s mother?

the IVs save my life.

that gave her an inscrutable look. the doors then opened, and i made a beeline for the frozen food section.

…and it’s all thanks to you, president obama!

i am not surprised by the lineup of state attornies general who are preparing to go to war over this law, though i have already called and emailed the attorney general in my state to cease and desist with his efforts. (i’m sure the intern charged with reading those things  is probably laughing his or her a$$ off at my verbage.) i don’t want my tax dollars wasted on a groundless and absurd effort to get rid of a law which frankly benefits me and all americans. but i’m sure these folks want to put on a good show (they are, by and large, mostly elected officials) for the portion of the electorate that brung them. which, in my commonwealth, would not include me.

(incidentally, if you’re in VA and would like to share your views with the attorney general, you can find him here.)

anyway, i want to share why i think this admittedly somewhat imperfect law is still the best freaking thing since sliced bread.

1) eliminating pre-existing conditions for kids immediately and for adults in 2014. unless you have what would be considered a pre-existing condition, you would have no idea what this means to a person, to a family.

i have often joked with BS that i married him for his sugar-daddy health insurance. of course, back then, i didn’t have a pre-existing condition. now, of course, i do.  if for some insane reason he lost his job, i would personally ding my entire family’s ability to get health insurance unless his next employer offered insurance without any sort of pre-existing condition clause.

this idea has hung over my head for four years now like an ominous cloud. when i first came home from the hospital four years ago, when i should have been focusing on getting well, i was instead completely wigged out at the prospect that should i ever need to get my own health insurance, i could not any longer. my family’s health was in potential jeopardy simply by virtue of being related to sickly me. how would i provide for my children’s medical care? it truly made me sad. it truly made me feel helpless, captive to a condition that i didn’t create for myself. it’s just in my genes.  and the only way to have a fighting chance at wellness was a therapy that cost upwards of $10,000 every four weeks. without insurance.

now, there’s a law on my side.

2) lifetime caps on medical coverage goes bye=bye: yes, those of us who have freakish illnesses that don’t simply require us to take an aspirin and call someone in the morning rack up an impressive set of bills, even with health insurance. honestly, no one ever expects to get sick; but when it happens, it happens. and if it happens with a hospital stay or lengthy and expensive treatment options, eventually, one wonders whether one will hit that point when his insurer and he will have to part company. someone i love had a fairly innocuous surgery, only to go into kidney failure, a coma, and infection hell and end up in the ICU for three months. (he’s better now, fret not.) that sort of thing hits the hundreds of thousands of dollars. in a lifetime, stuff happens, and you amass these costs… it’s not pretty.

but what is our choice? let people die? sorry, mrs. jones, but we can’t pay for your cancer treatments anymore. you’ve really fought hard over these past 5 years, and you’ve beaten certain odds impressively. but you’ve hit your cap. you’re done now. good luck and goodbye. GOOD LORD, it must never come to this. but i suspect for some people, it has.

and now, G-d willing, it won’t.

now a lot of people are up in arms over having to have health insurance. honest to G-d, people, you’re required to have home and car insurance by law. yeah, maybe it’s state law, but probably because that’s how it panned out at the time. who the fuck CARES whether it’s federal law? if you need to be prepared to pay somehow when your home is destroyed by fire or your car takes out another person’s car, then why the HELL shouldn’t you be responsible to have insurance about a certainty: you will one day become ill. maybe seriously. i, for one, really hoped for a public option to make things even easier for people who truly cannot afford insurance.

oh, right. it’s socialism, requiring people to buy health insurance.

let me give you a little lesson, john and jane q. teabagger. THIS is what socialism is all about. (i know it has some really big words, and i know because glenn beck isn’t providing his own special narrative that it might be difficult to understand. but i have faith in you: give it a go.) guess what: no one has taken private health insurers out of the loop. you know, health insurers are companies trying to take part in that great concept you know and love called capitalism? barack obama won’t be out there, lining people up and pushing them into some government clinic. it will still be your doctor, your country, your world.

and yes, i know the economy is awful right now. but if i have to hear one more bit about small companies possibly dying on the vine because now they have to provide their employees health insurance? well, maybe it’s that great capitalistic system telling you that you ought not be in business.  i mean, so you should be essentially using other people to make money for yourself — but not take care of them? i’m, sorry, but i don’t think so. this is a new cost of doing business. (and i’m sure a lot of you will find tax lawyers who will, in turn, find loopholes so you can escape this somehow. i’m counting on it.)

there are failings in the law, to be sure. for one thing, as i mentioned, i wished for a public option. while it wouldn’t directly benefit me, it benefits all the people who might not otherwise have the wherewithal to be insured. and i would be smacked upside my head by my BTD if i didn’t mention tort reform.

but hell. it happened. and i’m hoping that we, as a society, have not sunk to the depths of caring only about ourselves.  i’m thrilled beyond words that our elected officials — at least, SOME of them — actually put their necks on the line for something bigger than themselves.

and i feel good — really, really, good — for the first time in a long time.

I say, “I remember you.
You drive like a PTA mother.”

yep. today is my birthday. and, as your wildly narcissistic pal, i tend to really love the day because it’s all about me. (well, all about me and everyone else born on the same day… which, among my friends, includes three other people, particularly one high school friend born on the same day in the same year.  i’ve never established who was born first. me, i was born just after lunch, so she has the greater likelihood of being born before, i suppose.) in fact, i love the whole week before and the whole week afterwards as well. life is short. 24 hours is too little time to feel delighted to be on the planet another year.

this year is a somewhat big (though not ending in a zero big) year for me. so, now that i’m 25 (oh, stop it — i’m doing inverse dog years), i thought i’d put some goals together and put them out there. hell, it may keep me honest. and maybe, it will inspire someone else to put their goals on the road, too. sure, it’s over two months since new year’s, but my new year always starts for me on my day of natality.

so, as we celebrate what one of my beloved pals from grad school would refer to as wrekehavoc awareness day (and yes, her tongue would be so firmly in cheek that it would indent), in no particular order, the list of goals:

1) improve my health. well, we all know my health has been a struggle, thanks to a genetic crapshoot i lost. but (and with apologies to those doing the 12-step boogie)  if i can get some of that serenity to change  all the things i can change, then i need to exercise and lose weight. consistently. one of my friends has lost over 30 pounds; she has inspired me to take charge. and while i’m not using any particular diet program, i am watching my calories, using an online tool she steered me to, myfitnesspal.com. (no, this isn’t an endorsement. this is just letting you know what i’m doing.)

another friend — the wife of my husband’s best friend, which sounds scandalous when it’s put like that — has inspired me in the exercise department. i have always attempted the all-or-nothing approach which has yielded me exactly that — nothing. unless all consists of injured, disgusted, and not fit.  anyway, she has used her wii consistently and has lost 30 pounds over the course of a year. while it won’t make me the hottest bod in the land, it is certainly a great first motivational step toward bigger things. it gets me started in a way where i hopefully won’t kill myself in the first week.

as we all know goals don’t mean crap unless you operationalize them (thanks, grad school professors for that knowledge!). so the operationalization:

-work out three times a week

-write your food down at least 5 out of 7 days/week

2) institute a writing schedule. i blather, and i blather in a lot of places. this results in a lot of blather that isn’t really taking me where i want to be. if i make a schedule and stick to it, i might actually finish a new book by year’s end while continuing the quest to get the first book published.

yet i still love to blog; and after 8 years in the bloggy trenches, i am not about to give it up. but i think i ought to stick with a schedule for when i write to make sure that i contribute regularly there but not too much! that will be tough to stick to, i know. i love to blog. maybe i’ll only allow myself short bits on days when i am not scheduled to write…

(can you see me caving already?)

so. operationalization, please…

-work on new novel tuesdays and thursdays.

-blog mondays and wednesdays

-friday – open season! squee!

3) unplug the kids. since the snowpacalypse, my kids, especially my beloved son hellboy, have become much more plugged in. in fact, i fear one day that either the star wars video game or the wii lego batman will one day come alive and pull him into the tv to live forever, shooting at dog-knows-what. while i suspect my kids will not grow up to become serial killers (note to self: which parents think their kids WILL?), i need to make a concerted effort to find ways to occupy them — or, more to the point, get them to occupy themselves!

here’s the challenge. hellboy has no kids his age nearby. zero. zilch. nada. BC has one. of course, it’s easier to get BC out of the house and on her bike, especially since i am not as worried that she’ll be in the street when someone zooms up at 60 mph in a 25 zone. but what to do with hellboy? how do i get him into the backyard to play when he’s all by his lonesome? do i book up his weekends with playdates months in advance (since these kids all seem to have much busier schedules than mine do)? gone are the days when you could just run up to your neighbor’s door and ask him to come out and play. (and, in hellboy’s case, there’s no appropriate neighbor’s doorbell to ring.)

hmm. here goes nothin’.

1) look at the calendar at the beginning of the month and plan at least one playdate for the boy/girl.

2) research fun backyard things that the boy would enjoy doing. the girl is pretty good at occupying herself, but the boy will need more than a few slimy bugs to entice him away from luke skywalker.

okay. so three should be a start, right?

anyone out there have ideas to help me meet my goals? that goal three is a bear for me, and i know there are parents out there who do it all much better than i do. please enlighten me with ideas, websites, and hope.

and heck — share your goals if you have any. maybe new year’s came and went for you. so hell — you can say it’s your birthday today, too.

see, i’m 25 today, so i know how to share.

(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.

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.

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.

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.