Category: miracles of science

jesus wept. and G-d laughs Her Ass off.

jesus wept. and G-d laughs Her Ass off.

Posted on by wrekehavoc

somedays, i just look up at the sky and wonder what the hell i did. and no, not even on days like today, when i find out that my trough level (the level of my immunoglobulins post my first treatment) is still low. i’m not skee-eerd. after all, i figure it will take a few treatments before someone jumps up and down and screams, woohoo, it’s working.

but meanwhile, back at the ranch…

1) i continue to do lice checks on girlfriend’s hair. nevermind i only usually find one or two eggs each day and no live lice. i am determined to hit a week where i find nothing, nada. and believe me, lice checks suck. i have to sit there and go through every bit of BC’s topical real estate to find anything. it’s hard, and i am noticing that my 40+ year old eyes are squealing like someone is dragging them uphill.

for those keeping score, here are things we’ve done to get rid of lice.

a) use OTC Nix/Rid product (2 treatments) that probably will ensure that BC will grow another head. [check]

b) put olive oil on head and sleep in shower cap. [check]

c) put original listerine on head, shove hair in shower cap, then let it dry. [check] [and if you’re wondering, yes, your hair smells like original listerine for days afterwards.]

d) buy tea tree shampoo and conditioner. use daily. [check] [smells somewhat like original listerine. ugh.]

e) bag every non-washable item in BC’s room for several weeks. [check]

f) wash every washable item in BC’s room in hot water and hot dryer. on a 90 degree day. [check]

so, one would think that all this effort made a deep impression on BC, as in, “gee, mama really wants these things to get the hell out of our life.”

but noooooo.

BC is in a camp called dance around the world; and yesterday, she informed me, was bollywood day. (and yes, i must tape her doing her bollywood dance moves. i nearly peed myself laughing on that one.) i’m not quite sure why, but in her infinite wisdom, BC decided to dump what appears to be a metric ton of silver glitter IN HER HAIR. this stuff is STUCK TO HER SCALP. and guess what? it makes it VERY FUCKING HARD TO DO A LICE CHECK.

so BS, if you’re reading this, let it be known that i was not supposed to tell daddy. (she meant verbally, so i think i’m covered.) but rest assured, girlfriend is washing her hair in the loathed tea tree shampoo/conditioner duo for the rest of the week.

and she has already incurred the wrath of mama(TM) .

but wait, there’s more.

2) a most adorable little dude is celebrating his second birthday, and i am honored to be baking cake for 60+ people. jools is home with me today, and we’re having a great time (now is quiet time, so i can type on my laptop and he can play Freddy Fish on the other computer). a great time other than a slight mishap.

we were mixing cake number one. jools had his big spoon and was stirring the batter as i was hooking up my portable hand mixer. we used my biggest bowl, one where the kids can stir a decent distance from anything i might be doing. so as i was reminding him, just as THE WORDS WERE LEAVING MY MOUTH, words that said DON’T EVER PUT THE SPOON IN THE MIXER WHILE THE MIXER IS GOING, jools did the unthinkable. he put the spoon in the mixer.

BVVVIT!

and then, the mighty mixer, the mixer that had survived for nearly 18 years, broke. never to go again.

once i made sure that he was absolutely fine, i barked at him for not listening to my words. and he cried, cried, cried, cried, cried.

so G-d, if you’re listening. can you get me kids who listen to me occasionally and think?

oh, and a handmixer would be nice, too.

chills and thrills

chills and thrills

Posted on by wrekehavoc

i’m ba-ack (along with Broooce, who is softly crooning New York City Serenade, one of my favorites.)

there’s something wildly off-putting about taking a medication that will help save your life but will make you so ill. i thought i had made it through okay, but about two hours after finishing my infusion, i started coming down with a fever, chills, nausea, and a feeling that my head was in a vise. i think i scared my kids, too — i was solo-parenting that night, as BS had to go to a class, and i really, really got chills when i was trying to get the kids to bed. i didn’t make anyone take a bath, and i think i barked at the kids a bit, which probably was The Big Clue that Mommy Doesn’t Feel Well. (i’m not usually the biggest barker in this house.) my kids are pretty good at picking up on such things. thankfully.

jools let me crawl under the covers with him and read stories. his one cover wasn’t working for me — i felt like i needed thousands of blankets to keep me warm. i convulsed into shakes and shivers, something i am sure was frightening to a little boy. but he was tough. he patted me and told me he loved me. i was a bit frightened myself at that point, so i really appreciated that in ways a little nearly-four-year-old will never comprehend.

then, i crawled into BC’s bed to read her stories. i was shaking so much that i couldn’t hold the book up. it was a pretty humbling moment as BC grabbed everything she could and piled it on top of me — her heavy blanket from grandma, her quilt (from me and BS), her towel, her robe — anything to keep me warm. and it worked for a time. the girl is a born empath and caregiver. she didn’t make me read any stories — we just sat and talked. i don’t even remember what we talked about, as she told me i didn’t have to talk, that i could just listen and she would talk about something. i really regret that i have no recollection of the conversation; i felt that ill.

and the only thermometer i could find was the little Dora the Explorer thermometer. (i found others, but let’s just say that i wasn’t putting them in my mouth.) my thermometer, MIA since my surgery, was gone just as i really needed it. Dora would have to do.

mercifully, BS came home from his class early. [G-d is good.] i called the doctor on call, as mi amiga Dora informed me that i was currently pushing 102F, which isn’t earthshattering in and of itself, but for someone who has a tough time battling infection, i can’t risk a whole lot. the doctor on call told me to dose myself with lots of benadryl. if my temp continued to climb, i would need to get steroids at the ER. joy.

lucky for me, the benadryl knocked me out, so i never did discover what my temp was in the middle of the night. but in the a.m., i was still at the 101.something mark. BS stayed home, along with jools. it’s half-day at all elementary schools here, so basically, BS had both kids from 1:30 on. they went to the mulch pile and put mulch on our playground; they played on BC’s playground at school with two friends; and apparently everyone survived. my fever finally broke in the evening, though my head still hurt and my nausea continued.

and so, here i am, today. my temp is relatively normal. i still have a headache. i had to force myself to eat lunch. yes. me. force. food. hard to believe, huh. and the thing i have to come to grips with is that i get to do this all over again, every six weeks, for the rest of my life. i hope it gets easier as time goes on.

Walk tall or baby don’t walk at all – Bruce Springsteen

my first dose of gammaglobulin – magically delicious

my first dose of gammaglobulin – magically delicious

Posted on by wrekehavoc

this just in for CVID Central:

i seem to be quite fine after my first IVIG treatment today. i sat for about 4.5 hours, as i had three bottles of yummy Gammaguard (c) to get through. the nurse couldn’t get the IV into my hand, so i had a little bit of pain when she was jabbing around, to no avail. then, they brought in another nurse, who was able to set my IV in my arm. i fear my veins are just no longer interested in needles. (too bad for them.) i asked the nurse if she could also slide some mojito in there for good measure. (can’t fault a girl for trying, i guess.)

anyway, i’m a little headache-y and my stomach feels off thanks to 600 mg of motrin, but look, ma — no anaphylectic shock! (the claritin worked!)  i’m pretty tired though. the nurse described it as having a whole bunch of immunizations at once, from your body’s perspective, so she said that i might feel off for the next 48 hours.

that’s the thrilling news to report. sometimes with me, boring news is the best.

feeling generous? care about heart health?

feeling generous? care about heart health?

Posted on by wrekehavoc

BC is jumping rope in the american heart association’s jump rope for heart fundraiser. donate online if you are so inclined (and thank you very much if you do!) — it’s tax deductible! [contact me if you want to donate online – the link they have goes away after a certain time, and unless you know BC’s name, which i’m not publishing here, you won’t know how to search for her.]

we feel particularly inclined to donate on this one because heart disease is something that is quite prevalent in my family. hopefully, it isn’t in your’s. but in short, here’s my mini-lecture:

get your blood pressure checked.

eat a decent diet.

if you are having chest pains, for G-d’s sake don’t ignore them.

there. lecture over 🙂

…worse than blue acid. apparently.

…worse than blue acid. apparently.

Posted on by wrekehavoc

BC has a cough. she’s had this cough now for about three years. it gets worse during allergy season (which, in the washington metro area, may as well be three seasons long) and when she’s sitting in lots of dust (such as in her room, which is a convention center for dust bunnies.) part of it has to do with some asthmatic fun, for which she takes singulair and, upon occasion, a puffer of Q-Var (a med i love to say since it sounds like something from Mork and Mindy: i come from the planet Q-Var. Nanoo nanoo.) but the allergies really aggravate things. and, judging from our time at the pediatrician’s last week, everyone and their dog is having allergy symptoms this week. even BS and jools are sneezing, and neither one of them has any allergy issues.

it’s the most wonderful time of the year.

so yesterday, BC came home from school bewildered. i pressed her for some info, and she told me that while she was not directly mentioned, her teacher was looking right at her when she noted that not everyone in the class had a real cough. and those without a real cough (and she named two boys who apparently have get-out-of-cough-trouble-free passes) are now in her book, down as people making trouble. “but mama,” BC protested to me, “i really do have a cough!”

so i wrote a note to the teacher, informing her that BC, in fact, has a real, honest-to-G-d, annoying-as-hell cough; and that i’m very sorry if it disrupts class. she is on medication, and i also send her in with cough drops so that she doesn’t make a ruckus in case a coughing fit ensues. i just wanted her to know that BC doesn’t cough for fun (even if another child was, which BC felt was the case. see, everyone was laughing because one child was making hilarious coughing sounds, apparently spoiling it for the real coughers (and no, i couldn’t make this stuff up if i tried.) and getting people like her in trouble.

so today, BC came home from school. how was school today, dear? well, apparently, she felt a cough coming on. she asked her teacher if she could get a cough drop. the teacher called the nurse’s office. then, the teacher sent her to the nurses’ office so that she could have her cough drop there. and there she sat. and sucked. and then she returned to class. (and no, i couldn’t make this stuff up if i tried, either.)

i’m so glad she missed important classroom time simply because she was wielding an apparently deadly cough drop. lord knows that asthma is contagious. and you really gotta watch out for that mentholyptus.

no matter what

no matter what

Posted on by wrekehavoc

Do any human beings ever realize life while they live it?—every, every minute? – Emily, from Our Town by Thornton Wilder

having nearly lost my mother twice before i was in college, i’ve always been a sort of carpe diem kind of gal, though there are plenty of diems i wished i’d carpe‘d and didn’t. days, weeks, months, years pass; and sometimes, i miss things. i forget things. it’s probably the main reason i write in a blog. i want to remember things – crazy things people say to me, funny moments with my family, that sort of thing. i may be one of the snarkiest people you’ll meet, but when you get up close, you find i am a giant mushball crybaby. especially on days when i have to face up to things like my mortality.

the good news, of course, is that there’s a treatment, IVIG, for my CVID. the infectious diseases doctor who is able to get me IVIG and who is graciously willing to take me on as a patient as a courtesy to my wonderful hematologist (and don’t think i don’t know that this life has me feeling like a professional patient who collects doctors like my kids collect Pez dispensers) has really moved the proverbial ball forward. the company that provides the IVIG has been contacting me today, getting health and insurance-related information from me. i am astonished at their efficiency; and i am wildly, wildly grateful that i possess solid health insurance that will allow me to do this life-saving activity without bankrupting my family. oh, i wish my family knew how grateful i am to each and every one of them. and they never really will.

when i push beyond the gratitude, i find i have to face up to this ridiculous fury i possess. it’s pointless, really, to be angry about something over which you have absolutely no control. i mean, i can be mad at myself for being fat. i can be mad at myself for not being kinder to people in my life. i can even be mad at myself for falling on the ice and ripping up my knee (though that, of course, was unintentional.) but i didn’t do this to myself. i didn’t cause my immune system to not be strong. hey. i drink my green tea. i eat my veggies. i even was exercising to make myself strong. but my genes? they just are what they are.

when i was a little girl, my mother instilled a mantra in my head, a mantra she still tells me, a mantra i have carefully taught my children. she always told me that she loved me no matter what. and of course, i love my children no matter what.

i guess this is the point where i have to look at myself and tell myself that i love myself no matter what.

tonight, i put on van morrison; and as he sang have i told you lately, i danced with my children. BC, of course, snuggled in my arms as she tried to lead while we danced (she’s just like her mom). and jools grabbed his blanket, danced with us in a big hug for about 10 seconds, then started to do his crazy pee wee herman meets david lee roth maneuver. i didn’t know whether to laugh or cry. of course, though, i knew at the end of the song, when poor BC had damp hair, i’d become a mushball mom again. and it was ok. “i love you, mama,” BC said as she looked up at me and smiled.

i guess if she can love me, so can i.

jesus is just alright with me

jesus is just alright with me

Posted on by wrekehavoc

on friday night, we decided to go out to dinner near the ballston metro stop. we were walking to the restaurant through the massive bus stop area, me on a crutch; because while i can walk fine without a crutch, i usually take it along when i am walking more outside of the house. i get tired, ya see.

anyway, so i’m walking on my crutch when we come upon a lady. she’s clutching her bible and shouting out to her Lord. she takes one look at me and starts shaking and rocking and screaming: “Lord Jesus, you must HEAL this lady, I call upon you to HEAL this lady NOW! she needs you, Lord, so please, PLEASE, heal her.”

i was tempted to throw down my crutch and walk right then and there, but i was afraid that this poor woman would have heart failure. so i lumbered on.

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