Category: health

punky's dilemma

punky's dilemma

Posted on by wrekehavoc

school is about to start, and i’m wrestling with my kids’ lunchtime situations, both from a nutritional and an environmental perspective. you can experience my angst on this topic over at the green parent, where i’m guest blogging today. go check it out and share your solutions, people.

i sure need them.

and to those of you who’ve gotten here via the awesome green parent blog, welcome. i promise not to curse in this post.

after that, all bets are off. (if you read back at my ongoing, so-called vacation from h-e-double-toothpicks, you may understand why.)

no rain

no rain

Posted on by wrekehavoc

a sort of continuation of yesterday’s post. because you know you want to hear me whine that. much. more. but fear not. i promise; today is a happy post. a shiny, happy post. a post with a happy buzz.

a post with no rain.

somedays, i feel like a professional patient. i have been to a pulmonologist; a gastroenterologist; a cardiologist; a dermatologist; a hematologist/oncologist; an infectious diseases doctor; a gynecologist (well, once a year, whether i like it or not); an orthopedist; and my regular, run-of-the-mill primary care dude… and my dentist twice a year, of course. and that’s just in the past year. and that’s just for me. not to mention the doc-in-the-box i hit up a few weeks ago when my lymph nodes went kerflooey (and my brother-the-doctor, alias BTD, told me to stop taking antibiotics and suck it up… which of course was the correct thing to do once i found i didn’t have strep. lord, i hate when he’s right.)

i spend a fair amount of time with doctors, and not just because i’m related to one, either. most treat me well. some treat me with complete disrespect. i have learned to appreciate many of them and the help they give me. and i have learned, over time, that very few of them really know much about CVID. they know pieces of the elephant, but they’ve never actually seen the elephant. (l’elephant, c’est moi?) (BTD tells me that in his years of practice, it would have never occurred to him to learn much about CVID until he actually had to.) i spend time educating them in a way that is hopefully not pedantic. (my brother larry says i am often pedantic. i try to use the word pedantic in a sentence as much as possible, just to show him i am not pedantic. phooey on you-ey, big brother 😉

seriously, as much as i like sharing what i know with doctors (such as explaining what my IgG, IgA, and IgM numbers mean), it does get exhausting, especially since i would appreciate more guidance than what i can get from the internet. i often marvel at the fact that if BTD wasn’t: a) a doctor, and b) a person who understands what CVID is, i would be fumbling in the dark, looking for that damn pachyderm myself.

so it was with intense pleasure that i met with the immunologist today. i hadn’t seen him since november 2006, when i decided to plunge into a semi-denial state and get a second opinion, an opinion which, of course, corresponded perfectly with his own. sure, i hate his parking lot in bethesda. but he is the best. la creme de la creme. he knows his stuff. he’s up on current research. he listens. (he even let me give him exercise pointers since he, too, just had arthroscopic knee surgery.)

and he can advise.

no, i still have CVID, and i’ll probably have CVID for the remainder of my hopefully plentiful days. i only have to have chest and sinus scans if i appear to be having trouble in those areas (and not mandatorily every year like other people have guessed. it is like he channeled my brother.) yes, he agrees with BTD that getting breakdowns of my IgG groups is not necessary (damn, i hate when my brother is right.) and yes, he will help me steer the train. come back in six months unless i have a problem or concern.

and keep those IVs of gammaglobulin flowin’.

finally. it’s like i found someone besides my brother who is familiar with my tribe of bees.

shakin'

shakin'

Posted on by wrekehavoc

hello, and welcome to another edition of things that scare me.

what terrifies you? (i mean, besides john mccain as president.) while i don’t have any diagnosed phobias at this time, there are a lot of things that scare the bejeezus out of me. not the usual suspects, i suppose. f’rinstance, spiders don’t bother me. going outside without makeup is a daily experience, so that doesn’t cut it. and i like rollercoasters as long as my feet are not hanging free.

so, things that scare me, in no apparent order:

1) having veins that don’t cooperate with people who are trying to put in IVs. like yesterday, when i ended up having seven or eight holes put in my arms and hands. (two in my right hand, one in my left hand, three in my right arm, one or two — not entirely sure — in my left arm. you should see the lovely purpley-bluey green bruise on my arm.) apparently, between scarring and collapsing veins (as well as 3 sets of IV tubing that weren’t cutting it), my arms didn’t want to cooperate with yesterday’s treatment, a treatment which ultimately took over 7.5 hours to complete. my hand was so swollen that i couldn’t get my college ring off.

i absolutely adore the nurses who take good care of me. i cannot say enough good things about them. i was so upset at one point, i burst into tears, not because being poked hurt (and it did, especially in the hands), but because i felt like i was making their lives difficult. bless them both; they were upset because they didn’t want to make me the human pincushion.

i live in fear that one day, my veins won’t permit an IV thanks to scarring. it’s so unfair; i’ve never, ever been an IV drug user, and yet i apparently have the veins of one. (note to self: i wonder how keith richard’s veins are doing these days?) the day that happens, i will end up with a PIC line, an idea that frightens me not only because of how it is put in but also because those thingies are prone to providing me with a whopper of an infection. which brings me to…

2) infections. normal people don’t worry too much about them. after all, they’ll take an antibiotic for 7-10 days, and off they’ll go. unfortunately, i am allergic to two different families of antibiotics. i have to use antibiotics that are safe for me sparingly, as i will definitely need them when/if i experience The Infection To End All Infections. which could be a simple infection for a regular person, but not for me. which leads me to…

3) not being around for my kids. well, duh. this is every parent’s fear, isn’t it? when you’ve been in a situation where, out of the blue, you lose things you need to live, then you are never the same again. one day, i was walking down the street, having lunch with old friends, doing my job. the next day, i was in the hospital with almost no platelets. if i had done something to precipitate this change, it would make more sense to me.

but i didn’t. just because i possess some wonderful genes, i magically developed ITP, then CVID. boom! everything changed.

in some ways, it has been a blessing. my entire life perspective has changed to the point where i think i’m living most of my values for once instead of glancing at them, like a passenger on the subway watching the blur of movement out the train window. and every day, i attempt to be healthy, though i’m far from perfect on that front.

i’m in remission from ITP. i’m in treatment for CVID. and i’m still shakin’.

and i’m trying to push back the thoughts over when the other shoe will drop.

it don't come easy

it don't come easy

Posted on by wrekehavoc

today, i share the tale of the Easy Bake Oven. it will be a tale much like another famous tale, though it involves no curtains. mercifully.

it’s starts with a little girl. let’s call her BC, shall we, as we always do around here. when BC was about three years old, she went to a chanukah party at her uncle BTD’s house. there were many children there, as her uncle has five kids, and her uncle’s wife’s family has a lot of children and cousins. at this party, everyone had presents to exchange; everyone, except the uncle, who had presents for all of the other children but no present for his beloved (and at the time only) niece, BC. probably a little oversight on the busy present shopper’s part.

in any event, bless BTD’s heart: this is conjecture, of course, but it appeared that after BC’s beloved uncle scrambled upstairs, and then downstairs, he presented BC with a gift he had plucked from an upstairs closet from thin air: a brand-new Easy Bake Oven. BC loved this oven; only, too bad for her. EBOs are for children age eight and up. no matter how mature madame was at this age, she was not ready for an EBO. carefully, her grandmother whisked the present away to toys r us, where she exchanged it for something a little safer for a spunky three year old.

fast forward to our hero, the now-eight-year-old BC. that same grandmother, remembering how much her granddaughter wanted that EBO, got it for her for chanukah. her other uncle, the lovable, right-wing nutball larry, supplied a whole bunch of EBO mixes to keep her own personal glycemic index at about 1000. happy days are here again, right?

not quite.

for our hero, who had not yet fully developed her ability to read fine print, took the giant long cattle prod pushing tool and shoved it into the oven, lodging it permanently inside the oven, even before she had any chance at baking anything. oh woe, she cried. her mom, desperate to dislodge the long plastic thingy, called up hasbro for guidance. unfortunately for all, hasbro and our friends at the cpsc had just announced a recall of the EBO. apparently, other things were getting entrapped in the ovens. (things called fingers.) dutifully, BC’s mom and dad packed it up and returned it, as they had been instructed. the mixes lingered, but the oven was gone with the wind postal service.

months went by, months when hasbro said they might rebuild it; or then again, maybe not. eventually, they issued a $25 gift certificate for any item on hasbro.com. considering the shipping, it wasn’t the best offer in the world. (BC’s mom promptly lost the offer, so in truth, she’s just rationalizing because she felt so guilty.) in time, BC’s evil mom, fearing that the mixes were going to be nastier than nasty, chucked them as well.

fast forward once again to this very date, a date which shall be remembered for so many things. for one thing, BC’s brother jools celebrated a whole week of dry nights; he was to be gifted, as promised, with a shark slip and slide. (after weeks of obsessing about this item, he decided to choose two other items instead as his reward.) for another, BC achieved straight As on her report card. and, remembering that a child had been denied her EBO for so many years, BC’s parents caved bought her her very own EBO.

hurray!

but woe to BC: her mixes are gone. BC’s mother, being cheap industrious, located DIY EBO recipes on the internet, as she knew the three included mixes would last about two minutes. and after BC’s dad returned from the store with a lightbulb (the secret to those crispy crusts delicate cakes heated plastic oven walls), we set forth on our baking adventure.

#1: yellow cake (one packet) with chocolate frosting (one packet), baked especially for the man who bought the lightbulb.

#2 and #3: chocolate peanut butter fudge, one serving shared by wreke and jools, this serving was affectionately dubbed gloop for it’s consistency. imagine the fine taste of confectioners sugar with a slight brownish tinge. the second attempt, eaten by BC after a stint in the fridge, fared a little better.

BC had a great time, though her mother, wreke, was left with the realization that the same woman who would not buy wreke an EBO was willing to do so for her grandchild. no, instead, wreke realized that her own mother, aka the grandmother, was willing instead to let wreke use the real oven instead.

in retrospect, it was probably safer.

lift me up

lift me up

Posted on by wrekehavoc

i’ve just returned from lifting at the gym. it was uneventful, i am glad to report. the only one there from tuesday was the original man, who stared at me when i walked in. i grinned big and said, “HI!” and he left me alone after that. there were several other men in there, and eventually, one other incredibly fit woman. no one paid attention to me (though one guy was staring at the other woman at one point. i only noticed because i was waiting for the barbell, and he was waiting, in between reps with the barbell, watching her. still not wonderful, but whatever.), and i paid little attention to them.

it was a beautiful thing.

exercise lifts me up. i seriously end up sad when i cannot take care of myself the way i need to. if i keep this up for life, i may end up corraling some of you into becoming a sort of online workout club. i want you all to grow old with me and to feel as good as this 🙂 it’s great to do cardio, but i feel like women don’t get a strong enough message to do strength training. gaining muscular strength is where it’s at, as those old hipsters would have said. you help your bones, you help maintain (and obtain, in my case) a better weight situation (especially since muscle burns more calories than does fat), and you probably can kick someone’s ass in a dark alley.

(just kidding on that last one. well, at least for me, anyway.)

and no, you don’t have to spend your life on machines. in fact, when i am using machines, i am more likely to “cheat” and be too comfortable. (in other words, yes. i am actually doing pushups.) (commence laughter.) the workout i’m following, which uses few machines, lasts only about 35 minutes and a three-day/week commitment. it’s great to do cardio on two or three of the other days if you like. but i see these cardio bunnies on the elliptical, men and women. they spend an hour on a machine and don’t push themselves much. (there’s one woman who regularly reads the Washington Post on one of the machines. you should see her toss the sports section.) if you don’t push yourself to a higher intensity, you’re not really getting the full benefit of the time.

of course, i have my little POS hot pink sansa clip with me, loaded with my usual assemblage of weird songs. (who knew that i was thinking i could clean up for christmas would be an inspirational workout song?) at some point, i would love to start amassing suggestions for workout playlists which don’t include any current crappy pop. (i’m very open to new music; i’m just not open to the stuff that stuffs up the Top 40.) if you’ve any suggestions, drop me a comment.

after all, i need a change. i may be the only person who hangs out on the elliptical tripping to this:

i probably look like a complete dork, but it’s almost a religious experience 😉

well the madcap laughed at the man on the border…

pump it up

pump it up

Posted on by wrekehavoc

during the school year, i hit the community center gym roughly at 9:15. it’s a great time to be at the smelly cheap wonderful facility, as the pre-work exercisers are on their way and the only ones left are:

1) the senior citizens, who play some weird, cultish game that is a cross between tennis and badminton (and they’re out for blood, man. seriously.);

2) the stay-at-home moms, including the new moms who do stroller stride around the track, desperately wishing for post-birth fat removal;

3) the junior high kids at their PE class — the community center gym is their gym, so you see four or five track stars running gym teacher mandated laps, followed by the herd, followed by four or five kids who you just know are already heavy smokers;

4) the one token woman who shows up in the weight room and who looks like a tough prizefighter; and

5) the fire fighters, who, during their non-call moments, are bulking it up in the weight room.

there are a few other regulars, mostly men who i wonder about. unemployed? shift workers? serial killers? who knows. one approached me when i was new and wanted to help me work out, but i casually flashed my wedding ring and tried to pawn him off on another lady. i rarely wear my rings, as i lift weights, so that was my lucky, albeit inexperienced, day.

but it is a known experience.

this week, i have to get to the gym after 1 pm, as that’s when i am childless for a few hours. i like to work out before i hit the supermarket; working out keeps the world safe from ring-dings. so i hit the gym, precisely at 1:00. it is summer now, so there are no PE kids to dodge. and apparently, at 1:00, the seniors must be having their naps. the new moms aren’t there, either — it’s prime baby napping time, too. and no firefighters to speak of. (sigh.) even ms. prizefighter is gone.

this left me with several men, some older, some younger, in the weight room. the only girl. i brought my new weightlifting bible with me, set it down on an unused bench, and started my routine. as i picked up my barbell and started lifting, i saw an older lifter looking at me. looking angrily at me. a look that said: what the fuck is a GIRL doing here? he glared at me pretty much for the entire 40 minutes i was in the room. i just focused on my workout. i mean, maybe he was just having a crappy day? or maybe he was constipated? i dunno.

i walked over to pull on some other weights. i noticed a younger guy looking at the bench where my book was laying. shoot, have i broken some gym etiquette, i wondered. i walked over and apologized. no, he replied with a smile, i was actually just looking at your book. well, the cover with the picture of the hot chick, anyway.

i started to do some step ups on a box that was covered in astroturf. these things kill me, but i feel better in the end after doing them. in the gym mirror, i noticed another one of the younger guys, just staring at my wisconsin-sized ass from behind. was he admiring my form? was he pissed that i was taking up space in the tiny room? was there a rip in my capris? i’ll never know. i was a little creeped out, but i just kept on.

finally, i had to get a ball and do these weird-ass jackknife things. an older man somewhere in the 50-60 range, hair parted and maybe bob dobb‘s dad, walked right up to me. what the hell are you doin’? he asked, snottily.

by this point, i had pretty much had it with the men. i can understand why some women join wimpy-ass places like Curves, but when i did a trial week there, it didn’t do anything but aggravate the shit out of me and waste my time.

i got up and looked him in the eye. it’s called a prone jackknife.

he looked at me. what the hell are you doing that for?

to get stronger, i replied. i’ll show you how to do them, then why don’t you try a few?

hell, no, he replied.

then, he left me the hell alone.

no one, but no one, is kicking darla out of the he-man woman hater’s club.

radioactive

radioactive

Posted on by wrekehavoc

heh.

as foreshadowed last week, yesterday, i had a stress test with pictures. this means in normal human parlance that i had some radioactive dye injected into my arm so that they could see how well my heart functions as i walk faster and faster uphill. not really too hard until you realize that all i was allowed to eat all day was toast and a little juice before 5 am. and the three-hour test started at noon.

but i passed. i believe the doctor’s words were: you have a good heart. he literally went into no details, such as my recovery time after hitting 90 percent of my heart rate. nada. i still don’t even know what was seen on my echocardiogram i had the day before. (because of insurance vagaries, i had to schedule the tests on different days.)

i still have chest pain which radiates down my left arm. i guess since i am not dead it is probably something else, like a nerve. but the nifty thing i have now is a letter. a letter which will help me enter federal buildings, airports, and anywhere else with a detector. see, for the next three weeks: i’m radioactive. i can set off all sorts of things.

i always thought i was a little radioactive, considering i grew up a little ways from a nuclear power plant. but now, i have a letter to  prove it.

whee! better living through science!

i wonder if i glow in the dark?

fragile

fragile

Posted on by wrekehavoc

the thing about modern medicine is that we, modern citizens in the modern world, assume it cures and completes everything. you take a pill; a malady ceases. you inhale a puffer of medicine; you breathe again. it’s simple and it seems to work most of the time.

yet BC continues to struggle with her coughs. the child is on symbacort, nasonex, amoxicillin (20 days, thanks very much), prevacid, and zantac. (she’s also supposed to be on zyrtec, but it doesn’t seem to do anything for her, so we’ve taken that one out of the lineup.) the cough has improved a bit, but her stomach aches, in spite of the yogurt i attempt to put down her gullet to counteract the antibiotic destruction of good bacteria. she isn’t sleeping well. and she’s a bit miserable at night. in fact, last night, she wailed: i wish i wasn’t on all this medicine. i was happier when i was coughing all the time!

there are those times when you wonder whether you’re doing the right thing.

it doesn’t help that i’m only finally coming out of a tough IVIG experience. understand, i ADORE/ LOVE/ WORSHIP the nurses who take great care of me. but accidents happen. i go through three bottles of Gammagard, and i sit for about 4-5 hours because it needs to drip slowly or else i get ill. unfortunately for me, the second bottle dripped so quickly, it finished it in record time. the clue, of course, was that for me, finishing two bottles in two hours is unheard-of. i stood up to let the nurse know i was ready for bottle #3.

and it all started when i sat down. my body felt fluttery and weak. my head started to ache. my stomach felt nauseous. (note that i do not barf. i am only nauseous when i am seriously ill or when i’m pregnant. i knew it wasn’t the latter.) in short, i was having a reaction to the IVIG.

see, i’m allergic to IVIG. i need it every four weeks, so i get it, but not without premedication. when i had it for the first time in the hospital two years ago, the nurse ignored my brother-the-doctor’s suggestion that she premedicate me with benadryl prior to giving me IVIG since i have such a history of allergies to so many things. it’s not written on your chart, she muttered without interest. let’s give it a try without.

within 20 minutes, my entire body was shaking violently. it was after midnight (why do they always try things in the dead of night when no one is around?), and i struggled to actually push the help button. when the nurse finally arrived, she looked at me deadpan as i was shaking uncontrollably and having what i can only guess what some sort of a seizure and said, gee, i guess you do need some benadryl.

(there are times when i wonder whether i would have been prosecuted for kicking her once my body settled down.)

once the benadryl was added to my IV, it was as if i achieved nirvana in 30 seconds. peace reigneth. probably the first time in my life i understood why some people inject themselves with drugs. there’s no wait. instant karma.

[kids: i am not endorsing injecting yourselves with anything. do not try that at home or anywhere else.]

i always have a reaction to IVIG. at first, even premedicated, i ran a temperature, had terrible chills, and was exhausted. i’ve moved on to the place where i usually just come home and go to bed and wake up fine. but for some reason, the headache i developed from the latest reaction, along with the exhaustion, followed me for days. i can’t imagine it was the IVIG the entire time; i suspect it triggered something that just went from there.

but we never went camping. i had an awful mother’s day. and i didn’t really start feeling well until yesterday.

i guess i better remember that neither my kid nor i is invincible.

remedy

remedy

Posted on by wrekehavoc

our house is stress central.

one child had to get two immunizations yesterday. a child who has a limited pain threshold. i won’t mention names, but it’s a girl child. a girl child who was star of the week one minute but then not necessarily star of the pediatrician’s office the next. her hand started hurting her, along with the shot sites. tylenol was not helping. my brother-the-doctor indicated that perhaps a nerve was hit, but not a biggie. still, not a pretty afternoon.

one spouse had to work. he had to work a lot. he had to work a lot again. he called at 4:45 pm to share that we needed to go downtown to pick up one other child at school. school ends at 6 p.m. this is the height of DC rush hour, coming AND going. am i happy yet?

no. not hardly.

downtown we drove in a rush, the unhappy and now-in-pain immunized person and i. we made it in record time. my parking pass was confiscated, as i need a new 2008 one. it is now may. but nice security people let me park anyway, as the worst security threat we pose is one girl reenacting the exorcist. (i’ll let you wonder which one. the answer is not as simple as it might seem.)

we make it to one hellboy’s school. a hellboy who apparently as of late has made a career of knocking around some of the toddlers in the morning. (just cause.) someone is acting out. someone who might be a pissed-off palooka. but knocking babies around like inflatable punching bags is unacceptable behavior around here.

fortunately, today was not a punching-other-children sort of day. it was merely a spending-time-holding-hands-with-my-main-girlfriend sort of day. yes. the boy is in love. and he’s in love with a girl named condoleezza.

not this one (though i suspect she may be named for her. but i don’t know for certain.) ah. only in DC.

but he listened. and he behaved.

am i happy yet?

not quite. but a little better.

we three rush home, rushing in a rush hour way. which means not exactly speeding down constitution avenue. it doesn’t help that the woman driving in front of me is driving like hunter s. thompson is her co-pilot. wouldn’t it be funny if we got home and daddy’s car was in the driveway? BC joked.

don’t push me, little girl.

of course, BS wasn’t home when we got home. and i had not even cooked dinner. when it’s after 6 and dinner isn’t even started, and people are climbing the walls in search of something edible, it is time to visit mr. freezer to see what magic he holds. lucky for me, there was a wegmans veggie lasagna languishing, ever since i bought it and BS said: ew. no one is going to eat THAT. tough times call for tough measures. (and i say that in this house, if you’re not home, you don’t get to pick dinner.) that sucker was going in the microwave.

miraculously, the kids loved it. we’re talking BC, aka miss picky-picky of the western world, asked for seconds. the only criticism i got about it was that there were carrots in it, according to jools. (i don’t have the heart to tell them that there was also spinach and mushrooms. jools loves them, but BC hates both of those.)

am i happy yet? getting closer.

i get kids bathed; i read some chapters of some inscrutable Bionicle book we found at the elementary school fair last weekend. i medicate a certain older child with the zillion different things she requires thanks to her magical lungs… and immunizations. in case i have forgotten, she is IN PAIN. she CAN’T MOVE HER ARMS.

do all moms have days like this?

i start hellboy into bed. it’s 8:00. BS comes home.

DADDY!!!!!!!!!!!!!!!!!!!!!!!

well, so much for that mission accomplished. at this point, BS is speaking in monosyllabic grunts. he has had a long day. he has had a long, not-so-good day. he has had a long, not-so-good, and apparently hungry day. did you eat yet? i believe he grunted in the negative. enjoy the lasagna!

i get the boy into bed. i get the girl into bed. she’s in pain, so i get her something from the freezer to help at least one of her arms. in vain, of course.

BS says goodnight to the girl. BS says goodnight to the boy. after a few minutes of decomposing, as we call it in this house, BS announces he’s going to bed.

fabulous.

meanwhile, there’s one little girl who can’t sleep. in the morning, she’ll let me know that she was UP. ALL. NIGHT. but i waited, and i waited until she fell asleep before i went up to bed. so i know she was at least asleep for 30 seconds of the night.

on the bright side, little man went to sleep like a champ.

lately, i am so exhausted. i feel completely wrung out. tomorrow, i go for some more IVIG, and hopefully that will help me keep from getting sick. see, when i get wrung out, i get sick. no one around here gets that. moms are supposed to just keep going and going and going. but i have to just stop sometimes. if i don’t stop some times, i will stop. for good.

fortunately, this morning, i awoke and thought about a little boy in this house who likes to sing a certain song. how BS found out about this group, i don’t know. but jools is completely hooked on the hook of this song, called Nth Degree.

i found it on youtube. and everyone gathered around. even BS.

and suddenly, there was the remedy. it was just a few minutes, but we actually were all smiling. we were all happy.

even me.

http://www.youtube.com/watch?v=_vhMhm9euT8&hl=en

and that dang bird is still trying to get into our house.