Category: health

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

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

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.

better living through lice

better living through lice

it finally happened.

for weeks, if not months, one of BC’s buddies has had lice. it never seemed to go away. then, several other girls in her class got it. then, the girl who sits next to BC got it. i was beginning to wonder — how on earth has this gotten out of hand?

just as soon as i wrote an email to the school parent’s email list, i noticed BC scratching. sure enough, we saw what looked like lice eggs. and after everyone in this house was thoroughly checked, it appeared that i, too, had lice. ugh. we both shampooed with nix and spent the night with olive oil on our heads. by the morning, i smelled like a sickly salad dressing.

in the morning, i didn’t see many eggs in her hair. she was too afraid to look in mine. but, not knowing the school policy, i figured i would go in to school with her and visit the school nurse. the school nurse looked in BC’s hair and was impressed by her lack of lice. i asked the nurse to look in my head, too. hahaha, she said. you just have dandruff.

i have never been so happy to broadcast to the world that i merely have dandruff.

children are allowed back in school if they’ve been treated, so BC was told to go to class. i’m feeling rather mixed about this. i wonder whether the epidemic would have been slowed had a few kids stayed home a little bit. i really feel for the parents, though — i completely understand what an incredible pain in the ass it is to clean your house to this extent. i am not joking when i say i have done about 30 loads of laundry in a 24 hour period.

–insert scream here —

anyway, i spent an entire day putting most of BC’s belongings either in a hot laundry/hot dryer combo or bagging them in hefty bags (where they will stay for two-three weeks.) i’m bummed that i finally had cleaned my living room to the point where i could see floor again and start inviting people over my home without feeling fearful that a wrecking crew would be summoned to my house. now, there are about 16 bags in my living room. waah!

i’ve also been cleaning my stuff, too. i am not taking any chances.

i wonder how many calories i have burnt up in housework over the past week?

the plague

the plague

meet strep #1 and strep #2. yep. both kids were swabbed on friday and came up positive for strep. (i already was on antibiotics, so here’s hoping that i don’t create a super-breed of strep in the process.) so BC missed her softball picnic yesterday, and all of us didn’t go to friends’ for dinner. it was a major bummer. adding to the bummer, the softball coach was out, so BS had to coach softball anyway AND then work the grill in the hot sun from 12-1. (he has a major burn.)

the bright spot in the day was a surprise visit from nylonthread and her wonderful daughter. sure, my kids were still in pajamas and i looked like hell. but none of that mattered. the kids were so delighted to have another kid (also on antibiotics with a brother with strep) in the mix!

thanks so much for coming by! hope the state of the house didn’t make you sick, too!

chills and thrills

chills and thrills

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

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?

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.

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.

self-medication

self-medication

i’m sitting here with a wee bit of ben and jerry’s light phish food (here’s the phull phat version, my medication of choice during my pregnancy with hellboy), freaking out quietly. while i’m still chagrined that this stuff goes for $4 a pint (MAYBE $2.99 on sale on a cold day in hell), it’s WAAAAY cheaper than what i found out i would be paying for the IVIG if i *didn’t* have health insurance.

see, i got an interesting letter today informing me of my benefits. the IVIG alone — and we’re not talking any of the tubes or IV apparatus, we’re not talking about the nurse who has to hook me up and take me off and monitor me, and we’re not even talking about the freaking doctor visit, which of course, i would get charged above and beyond all of it — would cost a couple thousand. each time. and i have to go every 4-6 weeks. ad infinitem.

now, as my friend suzanne likes to say, we (she and i, not the Royal We) have the mathematical ability of raccoons. (okay, so now she’s in a position of serious responsibility that requires mathematical ability, and i’ve proven that i can make it through graduate level courses which require things like the application of quantitative techniques. but old fears die hard.) but even so. i can do the math and figure out that, at a rate of every 6 weeks, this would cost over $30,000. A YEAR.

i could kiss the feet of the people at my insurance company. i could kiss the cheeks of the people who are coordinating this life-saving stuff for me. and i should probably kiss anything BS wants for having health insurance and for providing this life-saving paper for us all. but it does make me wonder heavily about all the people out there who don’t have good health insurance, or health insurance at all. and it makes me wonder about all the people who don’t seem to want to have any sort of national health program beyond medicaid and medicare.

i may yet become an activist on this frontier. i find it so frightening that i get access to quality care simply because i can afford the insurance, the co-pays, the out-of-pocket expenses. what if i couldn’t? where would i go? should i simply die? i shudder to think about that; i have a feeling that is the case for a lot of people.

no matter what

no matter what

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.

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