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Sep 26th, 2013 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
Sep 17th, 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
Sep 16th, 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.

f*** you (with dedication to the susan g. komen foundation)
Feb 2nd, 2012 by wrekehavoc

susan g. komen foundation, this one’s for you.

yesterday morning, i woke up to my favorite newscasters sharing the info that the susan g. komen foundation had decided to no longer provide funding to planned parenthood because of their relatively-new policy of not giving funding to any grantees currently under investigation. i first thought to myself, wow. this can’t possibly be a smart public relations move. and my second thought?

f*** you, susan g. komen foundation.

so basically, the same people who have an army of lawyers running about suing everyone who uses the phrase for the cure, the same people who have spent oodles of money blocking legislation that would actually help women who are patients, the same people headed by a woman who has  corporate interests in multiple organizations that might cloud her original purpose — are now messing with poor women and their ability to get cancer screenings.

particular bronx cheers go to this woman and this woman, both of whom are right-to-lifers who apparently care more about a blastocyst than a real, living human being, as blogger southernbeale shared in a righteous rant. who knows — they could be pressuring other cancer charities as well. here’s hoping those charities don’t bow to this sort of pressure.

i’m just delighted to see people taking the opportunity to send pledges to planned parenthood. many are asking that their donation be sent in honor of the susan g. komen race for the cure, which ensures that their honoree will get a lovely card from planned parenthood. i’m sure it’s suitable for framing. (i’d frame it, anyway.) in one day, over $600k rolled in to planned parenthood. so hey, all you right-to-lifers — you’d better start coughing up some cash to support SGK now.

yes, yes, they are a private nonprofit. they are entitled to give money to any organizations they want. but see, there are all these people who have dedicated time and energy toward fundraising for this behemoth of a group. those adorable ladies in pink who walk miles and miles and collect dollars upon dollars to help in the fight against breast cancer. they’re not going to shill for you anymore. they were willing to raise gazillions of dollars for you when you were a fighter for the cure. now, you’re apparently a fighter for the cure — for anti-abortion folks, only.

(note to karen handel: you’d better start your serious outreach to the teaparty types. like, yesterday.)

and another thing: people aren’t going to be buying pink shit anymore. corporate sponsors don’t like when you up and change your mission like that. they get jumpy. more importantly to them, their investors sometimes get a bit jumpy. and you know the expression: money talks, and bullshit walks. those corporate sponsors will walk right out of your big-ass, multimillion-dollar pink tent.

and now people are learning more about your history. as for me, after reading lots of material, i have come to the conclusion that you’ve turned into a big-ol’ marketing machine. fuck the cure — instead, let’s market our organization.  to paraphrase from one of my political heroes, it’s about the brand, stupid. that, and our executive paychecks and possibly our political clout.

don’t misunderstand me: i’m willing to listen about how your organization’s dollars have actually funded any sort of progress towards a cure. my mother lost both breasts to breast cancer, so believe-you-me, i am VERY interested in progress toward a cure. give me a holler when you’ve got that info.

in the meantime, what you have here is a brand, a brand supported by marketing and marketing and more marketing. and honey, lots of marketing dollars will shrivel up drier than a witch’s, well, you know what body part i’m talkin’ ’bout. SOMEONE’S got to pay all the lawyers and nancy brinker’s and karen handel’s and all those other folks’ salaries.

but it won’t be me.

i’ll just post this video for now. for the cure.

drive
Nov 9th, 2011 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
Nov 8th, 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.

look sharp
Oct 19th, 2011 by wrekehavoc

so it has been a thrilling day.

http://www.youtube.com/watch?v=Z1CLZdrFkYQ

i’m still fighting some upper respiratory thing, finally with some ceftin since it’s the next antibiotic in my rolling list of meds. i’m feeling stellar, and that alone, makes it a great day. then, i knew it was trouble when i heard my cell phone play “darlington county” — that’s my ringtone for our public schools. seems i had to pick the boy up from school because he was whacked in the tooth on the playground by a metal piece of playground equipment that another boy was bouncing on… then, he threw up, so i took him home. after an initial rest period, he seems okay, so i’m just going with the no-concussion track for the day. hope i’m right.

and then, BC comes home from school and tells me that i have to read some pages in her science book so that she can then discuss with me exactly what she/i read and then i need to sign and attest that we talked about the lesson. why teachers think parents want to relive their own respective heydays of middle school, i will never understand. anyway. today’s lesson: basic cellular biology; the idea of spontaneous generation and how it was debunked through experiments by pasteur and redi; the concepts of uni/multicellular thingies, what’s in cells; and growth, development, and reproduction. on the latter topic, BC explains that in general, you need two entities to reproduce; you don’t spontaneously just show up out of nowhere. the girl then scratched her head and thought for a second.

you know, mom, there goes the whole idea of adam and eve.

exactly right, i replied.

so i guess the day wasn’t a complete wash 🙂

silver threads among the gold
May 24th, 2011 by wrekehavoc

getting old. i guess it’s better than the alternative.

for those of you who don’t know me in real life, i am, in short, a spaz. i have fallen off amtrak trains, been pushed down a metro escalator (during rush hour!), fractured my ankle while participating in a boot camp class, and destroyed my left knee while taking a leap at the ice rink (and realized that i don’t bounce the way i did when i was, er, slightly younger. like the year before, when i turned 21.) i loved being active while growing up, and yet it is no wonder that at my age, my parents grimace audibly every time i mention my interest in trying some new strenuous pursuit. this winter, when we took the kids to learn to ski, i was cautioned by basically EVERYONE related to me that i was not, repeat, NOT to take skiing lessons. even BTD, a medical professional who spends plenty of time telling people the benefits of exercise, told me to cease and desist. i really, REALLY wanted to ski, too.

but alas. i did not.

last year, after several months of PT for my ankle, i went walking with my friend. only, too bad for me: i tripped over a tree root and re-injured the aforementioned ankle. (hints from heloise’s evil sister: when you hear a snap coming from your ankle, it isn’t a good thing. ever.) so welcome to more months of PT until early this year, when i was determined to try the couch to 5k program, a program i have started and never finished about 5 times now.

see, my attempts at the couch to 5k program resemble a certain someone’s attempts to build a castle:

i would be the couch to 5k person who continually sinks into the swamp, possibly after burning down, and maybe even after getting run over once or twice.

anyway, i attempted running back in march. oh, it was an unseasonably warm day, and i loved running up and down the hills in our impossibly semi-mountainous part of the people’s republic. i felt so great afterwards, and the accomplishment made me beam. but the next day? my right knee, ever-jealous of the reconstruction that happened to her left counterpart, mutineed. no bending for you, lady! going down stairs was particularly murderous. and so i knew something was rotten and phoned up the guy who fixed the left knee.

his office never called me back.

so, in a fit of annoyance, i called another orthopedic group, which fit me in promptly…for the end of may. it’s a good thing it wasn’t some sort of emergency; but i figured that if it still bothered me in two months’ time, then it would likely be worth the trip. and today was the day.

after some x-rays, poking, prodding, and slight conversation with a doctor who looks to be about my age, i have what is called (in klingon, apparently) excessive lateral patellar compression syndrome. not to be confused with either the china syndrome or the pepsi syndrome, apparently. my patella (also known in some parts as a kneecap) doesn’t want to stay in it’s groove. (it is busy finding its groove elsewhere, like stella.) i have some try-it-at-home exercises to do that may help strengthen some of the muscles. and if that doesn’t work, they’ll gladly make me do some…PT. (not again! not three years in a row!!) i could get a shot, but that’s not really a long-term solution.

but apparently, this is also the start of arthritis in my knee. and eventually, i will have surgery in this knee’s future.  and the very best part: the doctor telling me that perhaps i ought to stop doing the things that cause this.

read: no more couch to 5k program for you, grasshopper.

someone pass me the geritol, please.

Charlie Sheen and My Grandmother
Mar 4th, 2011 by wrekehavoc

Dear, dear Charlie Sheen.  Watching you implode before the public eye like a supernova hellbent on destroying itself and anything in its path has been riveting, I admit. To be sure, I don’t think I can keep track of the various news stories that have splashed across the screen in the past few weeks. Something about prostitutes, drugs, alcohol, allegedly threatening violence to various ex-wives, having your children removed from your care, stopping production of your sitcom… all you’re missing is a link somehow to the middle east and you’ll hit some sort of perfect storm of newsworthiness.

And your words,  your nonsensical, inflammatory language. It has been captured by numerous television and radio outlets, all falling over themselves to have you on in order to boost their ratings. People love to watch a car crash, and you, my friend, are an explosion tantamount to a fiery Indy 500 moment coupled with an atomic bomb. Several web developers have created sites which do different things with your random quotables, all in the name of grabbing their 15 minutes on your back.
It all has made me think of my grandmother.

I never really knew my grandmother, you should understand; she died when I was 11. My direct memories of her involved brief Sunday night phone calls where we talked about Lawrence Welk, trips to Nathan’s for hotdog lunches, and a painting of a rose she made for me which I treasure to this day. I never went inside her Long Island apartment; it was part of a residence filled with the newly-liberated, completely unsupported mentally ill of 1970s New York, intermingled with a lot of elderly people. It was far too scary a place for me, a little girl. I often wonder what it must have been like for her.

My grandmother was, in the parlance of the day, manic-depressive. She endured shock treatments throughout her life as well as many other treatments probably unfathomable to people nowadays. There were points in my father’s and my aunt’s lives where they were sent off to live with aunts and cousins while my grandmother was getting help. How frightened she must have been, and what was worse — the illness or the cure? Back then, mental illness was not only unacceptable, it was stigmatized. You were somehow a defective specimen of humanity. Dignity never entered into the picture.

But my gram attempted a life of dignity in between these times. It couldn’t have been easy, losing her husband pretty early on in all of this. And sure, there was the day when she went out and, apropos of nothing, put money down on a house.  I don’t ever remember her babysitting my brothers and me the way my other grandparents did. My gram was not a regular fixture physically near me; she was like a star I wished upon, but not for myself: for her.

And as I watch Charlie Sheen catastrophically exploding through the cosmos, I’m wishing on him. I’m hoping someone out there will stop him on this path toward self-destruction.  I pray that someone is helping him to harness that light for something better, stronger, and more positive for himself and for his family.

Blazes are not always glorious in my book.

Originally published at Smartly.Com

world aids day 2010
Dec 1st, 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


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