CVID – Wrekehavoc.com

Category: CVID

pink

Posted on September 26, 2013December 12, 2014 by wrekehavoc

the tide goes in. the tide goes out.

this morning, i made the trek out to washington radiology. i failed my mammogram on my birthday 6 months ago and, happy birthday to me, ended up with a biopsy. as is my medical custom, i stumped the experts; they didn’t see anything malignant, but they were also puzzled by the quantity of lymphoid tissue in the sample. i told the doctor that perhaps i have a lot of lymphoid tissue because i have all sorts of lymphatic fun thanks to my underlying immune deficiency. i mean, my lymph nodes react when i have an infection, when i drink hot and sour soup, and because the moon might be in the 7th house and jupiter is aligning with mars. you just never know. so hey, c’mon back in 6 months and we’ll take another looksee under the hood, okay?

like i’d say no?

my mom has lost both breasts to cancer and mercifully, she continues to be a major pain in my ass 30+ years after the fact. but thanks to that little tidbit of medical history, i go ping whenever the subject of family history and breast cancer comes up in a doctor’s office. mom recently underwent the testing to see whether she had the BRCA1 and BRCA2 genes and tested negative. well, yeah, that’s awesome, and i celebrated, thinking there’s one less thing potentially wrong with me genetically… except i learned, mid-biopsy, that there are loads of other BRCA genes, so there’s always the chance… which then made me want to scream at the doctor who shared that info why on Dog’s Green Earth bother with testing then? except, at that particular moment, the doctor had just cut into me with a very sharp scalpel, and also, there was that little matter of blood literally splattering across my chest, just like in the movies. it was pretty cool, actually, except for the fact that it was my chest and my blood.

maybe next time, i will ask to be put under.

anyway, so back i went today. i was a little perplexed by the fact that i was being charged for a full mammogram (plus the extra $50 for a 3D mammogram, which isn’t covered by insurance but which would probably make a hell of a slideshow at a party.) only one side was getting the ~~excruciating~~ glamour treatment. but the woman behind the desk who seems to repeat the same spiel over and over all day to women of all ages and sizes and races told me nope, no discount for one boob. ah well. you pays yer money and you takes yer choices. when i was finally taken out back ~~and shot~~, i had a lovely lady who was a wonderful smoosh-o-grammer. after the smoosh, she led me to a room to wait for the doctor.

now, let me tell you about this room. when you are doing your annual mammogram and you have never had any troubles to speak of, they take you back to the ~~closet they stuff you in~~ little changing room where you first got into your little brown gown (open in the front, no deodorant, no lotions, no creams please.) there, you wait for the technician who performed your mammogram to come in, tell you that you passed again, get your clothes on, and ~~make your way up the road to the mosaic district, where you can dine on fine food and shop at neiman marcus last call~~ go home. the event passes like a tiny bump in your road. but then, there’s the room. there are magazines. there’s a box of tissues. there’s an HD TV against the wall playing a video of the ocean tide coming in and the tide rolling out. it’s a little haven of medical office zen. if there was a giant glass bottle of cucumber spa water in the corner and mani/pedis, it might not be such a horrible place. but it is a horrible place.

it’s the place where women like me go.

it is the holding pen for the women who have failed their mammograms, a sort of purgatory. it is the place you go when an actual doctor has to talk to you about your results. women like me end up there because we have failed before. women who are new to failure end up there as well. and somehow, that oceanic video is supposed to be a positive, peaceful life buoy. today, though, as i marched into the room, i saw a young woman, probably around 30 or so. at first, all i could see was her blonde hair sprouting out of a head that was bobbing and heaving between her knees. i bit my lip. clearly, the girl had had some sort of shock, and no amount of azure waves was going to help her.

i walked across the room and grabbed a tissue. i tried to not look at her at first, as i didn’t want to completely intrude, but merely extended my hand near her arm, gently brushing the tissue against her elbow. i figured if she wanted it, she would take it; if she didn’t, she would ignore me and that would be just fine. you never really know what people want or need at times like these; but i cannot look away from it, either. she picked up her head, gratefully took the tissue, and said thanks and tried to smile. she wiped her face off, but then a fresh flood came and she put her head down again. reflexively, i started to rub and pat her shoulder, much as i do with my children when they are crying. i don’t generally make a habit of touching total strangers, especially ones who are in terrible pain; but i just didn’t want her to feel alone. i wanted her to know that other people will care about what happens to her, people she knows and loves. if even a total stranger cares, then her loved ones will surely embrace and comfort her, too.

i wanted her to know that maybe something awful was in store for her, but there was also love in her future, too.

she would try to stop crying and pick her head up and smile at me. i smiled back. but then, she would cry again, and her head would once again duck down. i patted her some more til she calmed down. she had just picked her head up when the nurse came in to call her. miss s, the nurse said, you will need more pictures and then the doctor will see you to talk more. come with me. my new friend miss s picked her head up and looked at me. hang in there was all i could muster. she smiled weakly, and i nodded and smiled back.

my turn came soon. the technician walked me into my little changing cubicle, which i thought was a good sign. after all, i had my biopsy news in the sonogram room, not in the little closets. the doctor came in, told me that the area where the biopsy was done 6 months ago had shrunk, and she didn’t see anything scary. nothing at all. so go on out and treat yourself, she said, smiling. i guess she likes to give good news. when you hit the point where you are sent to the room to talk with the doctor, your talks don’t always go so well, i guess. she’s probably as happy as i am. or close. i whipped off that brown gown and headed out, with big plans to walk around the mosaic district. that was going to be my treat. i walked past the room where i had waited. no one was sitting there. miss s was somewhere else, hopefully getting better news, hopefully sitting in a changing cubicle finding out that she, too, was going to bump into me at a more pleasant place. like say, neiman marcus’s last call. i will always hope so, and i will always wonder about miss s. but all i saw in that room was the ocean video, playing on a never-ending loop in high def.

the tide goes in. the tide goes out.

in memory of my friend syrentha savio.

rosh hash, or how i need to watch my honey

Posted on September 17, 2012 by wrekehavoc

so here we are, day one.

i’ve been writing down my food like a champ. we of course ran out of milk, so i broke out the almond milk and mixed it up with my protein powder, the new stuff (designer whey) which i don’t like so much. (i like this, but it ain’t cheap.) i ended up walking some paperwork into school’s front office, and from there, i hit the store to get some groceries. so much for dropping him off and working out, right?

ah well. after getting the brisket into the crockpot and getting carrots chopped for tzimmes (both inherently diet-friendly foods — not!), i finally went for a walk/run in the hood which was 30 minutes long or so, 30 minutes that was sheer ow on my knees. (this is what i get for not going go shul on yom tov. G-d is not amused.) it’s not a marathon, but it’s a start. and i did get out there.

and good thing i did, too; for at the stroke of 12:30ish, i saw those familiar digits show up on caller ID: the school nurses’ office. the boy is sick. nothing earth-shattering, of course — basically, his allergies were so bad that he had already been through an entire box of tissues and was threatening to use a forest-full by day’s end. after actually arguing with him in the clinic, i could tell that he felt pretty lousy. so now, he is home, on antihistimines, and knows the drill: no TV, no video games, no nothing fun until the school day is over. (i’m mean like that.)

so he’s having a giggle with his 30-minute reading assignment. and hell, since he has time to kill, he is working on another 30 minute reading assignment for later this week. little does he know that i would kill to get 60 whole minutes just to read for pleasure. (well, i do get that once every four weeks: it’s called getting hooked up to an IV.) i told him if he did that reading PLUS the reading log work, then i would give him 30 minutes off for good behavior. and lo and behold, it is done.

of course, in the midst of this, i am trying to work and cook. mom, jools yells, you know, i could teach you how to play pokemon right now. it’s really fun.

little boy, do you think i sit around and eat bonbons when you aren’t here?

so now, i’m stressed. and i’m trying not to eat for fun and profit.

and also when i get stressed out, i bake. it being rosh hash, i am baking honey cake — well, a honey cake that is supposed to be honey cupcakes. see, the recipe looks a bit lighter than the usual, heavy as a brick honey cake. i just don’t feel like something heavy — not that i should be eating it, anyway. but between the honey in the tzimmes, the honey in the cake, and, well, pretty much everything has honey in it (note to the non-jews in the crowd: it’s SYMBOLISM. you know, starting a year sweetly!), it isn’t going to be easy making my calories conform.

i guess i will stick with apples dipped in honey and call it a day.

it’s not a perfect food/fitness day, but i guess i am at least conscious of things.

happy new year to all who celebrate.

everything counts

Posted on September 16, 2012September 16, 2012 by wrekehavoc

in large amounts.

it’s almost a new year for red sea pedestrian types, so why not make a resolution? and hey, you don’t have to be a red sea pedestrian to get on this train, anyway.

i want to feel healthier. i want to feel better. i struggle with my health issues, and i realize that i need to be even stronger and tougher, as things are not getting any easier in life.

so here are my new year’s resolutions, and i hope i keep to the plan:

1) eat cleaner, simpler foods. sure, i can have a cheat meal now and again, but i need to eat better. no one else in this house needs to be following this regime, though it certainly would be beneficial for them. but i need to lay off their cookies and yummy stuff. and if i bite it, i’d better write it down. everything counts (in large amounts.) goal one: one cheat meal/week.

2) work out. i don’t need tiger dad at the gym to guilt me into coming back. and there will be days when i can’t get to the community center gym, so i just need to walk or run or do something else. if i don’t do it right after i take the boy to school, i never do it. so i need to kick my own ass and do something. and i know it’s boring, but some of these workouts must be weight training ones. goal one: as many as 5 days/week.

3) try to be more positive. (i know, i know, this coming from little miss self deprecation.) try to be less snarky. maybe it will rub off on my kids! seriously, this might be key.

anyway, i will try my best to not become pollyanna-ish ( could you see me doing that, anyway? really?) but i may start to chronicle my journey here.

and if anyone else is doing something similar, i could do with the support. feel free to weigh in (ha! i slay myself sometimes) in the comments. tips, workout mix suggestions, hell, anything as long as it is positive, feel free.

good ideas and wishes all count. especially in large amounts.

drive

Posted on November 9, 2011July 24, 2014 by wrekehavoc

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

http://www.youtube.com/watch?v=xQN7A6Vl1H4&ob=av2e

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.

blood makes noise

Posted on November 8, 2011November 8, 2011 by wrekehavoc

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.

world aids day 2010

Posted on December 1, 2010December 1, 2010 by wrekehavoc

…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.

http://www.youtube.com/watch?v=narrCWt02Zo

little miss can’t be wrong

Posted on May 20, 2010May 20, 2010 by wrekehavoc

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.

i feel good

Posted on March 24, 2010March 24, 2010 by wrekehavoc

…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.

happy birthday to me

Posted on March 9, 2010March 8, 2010 by wrekehavoc

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

http://www.youtube.com/watch?v=1k00hFKgjsI

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.

world aids day 2009

Posted 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.