Winter at the Gimp Compound

The holidays and the new year went well for me, though my computer needed some repairs that kept me from writing here for about a month. Happily, and for the first time in my 40 years of experience with expensive electronic equipment, my computer was still under warranty (by about five days!) and I got the disc drive replaced for free. Merry Christmas to me!

I had my feeding tube removed just before Christmas because I haven't needed it in so long and it seemed like the right time. In retrospect, I might have had it taken out a while ago if I'd understood the size and shape of it inside me a bit better. I have less indigestion and nausea with it not there to tickle my insides, so even though I expect to need the feeding tube again some day as my muscles continue to weaken, it's great to be without it for now.

Today was sunny with a pure blue sky and the snow melting off driveways. For much of the past six weeks I've kept inside and away from below zero temps that give the vent a worrisome little wheeze when out in the raw air. There's no way I know of to protect lungs from frigid air being pumped directly into them, minus the miraculous upper sinus warming system. So, I've been hibernating, reading, listening to audiobooks, watching LOST and Battlestar Galactica. And managing some little home care dramas I won't be talking about here.

I finally read Jessica Valenti's Full Frontal Feminism, which provoked so much blog controversy when it was published in 2007. It's a little anti-climactic to read it now, so long after all that discussion. I found it to be very basic, and almost entirely lacking in even the knowledge that disabled women exist -- disability is included in a U.N. laundry-list quote of women's issues, and near the end of the book Valenti mentions ability and age as two interests she won't get to talk about. But disability isn't in any other rollcall of women's issues elsewhere in the book, even when the other standards are named: race, religion, sexual orientation. Nor does disability come up when exploring the flipside of "choice" and how race and class (and disability) often mean that women in these categories are coerced out of parenthood rather than being denied birth control and abortion. None of the extensive resources at the back of the book were aimed at women with disabilities. Accessibility as a necessary part of all the activism Valenti touts was never brought up. Disabled women are invisible in this book.

I don't think it's a bad or useless book. Just rather alienating if you're not part of a specific young, white, straight, middle-class (or better), nondisabled sorority girl constituency of women it's meant for.

Anyway, my computer works now and I'm possibly staying home until Spring hits. So more blogging.

And November begins

I’m having trouble getting and staying online these last few days. I’ve a few posts I’m trying to finish and publish but my connection keeps foiling me. Failing me? Foiling me.

I’ve signed up for National Blog Posting Month again this November (see Sara's nerdly-spooky icon for the event on my sidebar just beneath the Obama icon), which means I should be posting everyday for the next 30. We’ll see if the intertube gods can help me make that happen.

In the meantime, I’m remembering an amazing man. Studs Terkel died yesterday at age 96.

Mid-September Already....

I'm here. And doing well, thank you for thinking of me, those who have emailed me in concern. I've gotten out of the habit of writing out my opinions here, and while I hope to get back to it again fully, it seems I can't be relied upon to post regularly until, well, until I do start posting regularly.

I've had good family stuff going on: Last weekend was my parents' 50th wedding anniversary. (Wow, right?) This weekend is a baby shower for the newest member of my extended family -- welcome to the clan, Merrie!

There's big disability rights activity going on in Washington, D.C. just now, didja know? ADAPT has set up camp at HUD, the federal Department for Housing and Urban Development, to bring attention to the Community Choice Act and the need for low-income housing options for disabled Americans. At least 50 ADAPTers have been arrested in peaceful protesting thus far. Why go to the trouble of getting arrested? Because they can and because they are fighting for disabled people stuck in nursing homes with no accessible, affordable alternatives.

I will be back to talk more about ADAPT. And Palin, and landmines (literal, actual landmines, not the topic of Palin and her disability advocacy credentials). In the meantime, you can keep up with ADAPT here at their website.

Minnesota Spring

A bunch of photos, unrelated to disability except in the "stay in your house!" sense:

The first four were taken at the Minnesota Landscape Arboretum the first week in June. The last photo was taken yesterday in my front yard.












Image description: My favorite easy-access spot at the arboretum is on this wooden bridge over a gurgling brook. Sit facing south and looking over the right side and the water trails away amidst big boulders while the crabapple blooms overhead. Lush, green, shady.













Image description: Look down the other side of the walkway over the stream and the water runs a bit slower, pooling around smaller rocks that have bright green moss growing on them.













Image description: Evergreen branches heavy with lush fresh growth -- thick soft pine needles in bright green -- hang all around the stream's shaded walkway.













Image description: My twin and I (bet you still can't tell us apart) and, I think, St. Francis of Assisi amidst the blooming lilacs. We stand on a groomed lawn next to a bronze statue of a robed figure with a bird resting on an outstretched arm. Behind us is a low retaining wall, and just behind that a profusion of blooming lilac bushes in your basic shade of lilac. The parenthetical joke just above is that my twin weighs about 100 pounds more than I and walks and breathes without assistive equipment. Otherwise, we're identical -- not.













For Sara.

Image description: A tiny nest filled to capacity with baby birds. The nest is maybe three inches in diameter and lies just inside the top of an evergreen bush. Four open mouths wait for a responsible adult to bring eats. One bird, much bigger than the other three, did not come from a finch egg. He's an infant interloper. Everybody's very fragile and helpless and ugly.

Update: The baby birds didn't fare well. Two days after the photo was taken there were just three birds in the nest. Two days after that, just the one bigger baby, who seemed dead. I think the interloper crowded the others out and the parents then abandoned the nest. There's a bluejay nest in the oak tree out back that I'm also keeping an eye on. I can see it from my window as I type. All seems happier there.

Hiya gawkers!

Yesterday I went to Great Clips to get my hair cut. The hairdresser I've had for the past year got a job at the local bank around Christmas, so I've been badly in need of a trim. But I was also very conscious that in the two years I've had a trach and used a vent I have never gone anywhere "cold" and required a non-medical person to, well, touch me.

Knowing how weird people can be about wheelchair users, I expected a wheelchair user with a trach and vent would make the experience even more of an adventure. I was so right. The level of gawking -- outright staring -- from people less than five feet from me far surpassed anything I've experienced in my 25 years of being visibly disabled.

People stare all the time, right? Three women, close enough for me to reach out and kick them, sat or stood with their jaws hanging down as they stared. And stared. For several very long minutes. It may have been much longer. I had to look away from the rudeness.

I've felt comfortable challenging that in the past, at the very least with a pointed look back, but this time I found myself unprepared and struck silent. I looked back and found absolutely no recognition that they were looking at fellow human being. They stared like I was an alien or three-headed dog. My nurse, a smart outspoken woman, was stunned into silence too.

Then I got busy with what I came there for and the calm business manner of the woman who shampooed and cut my hair. But I felt the Othering shame of those stares in a way I haven't for a couple decades. And here I thought I had this worked out. Damn.

Legs and other miscellanea

A follow-up to last week's post about "My fat (but actually very normal-sized) legs" to illustrate that I speak the truth: My legs are no longer skinny, but are also totally not fat, no matter how much the change in them surprises me or how much the media representation of "normal-sized" warps my brain even after years of being unhealthily underweight and wishing I was not.

Both of these photos were taken this past week, though frankly, the first one is just to show off my socks. Both are color pictures of me from mid-thigh down sitting in my white scooter. Vent tubing can be glimpsed here and there, as well as "The Tooth" (see endnote here) near my right knee in the second photo.















In the first I am wearing white print pajama pants pulled up to my knees to show long over-the-knee stripey cashmere socks in shades of green, brown, orange and light blue. Snazzy blue tennis shoes.

In the second photo I am wearing brown pants pulled up to my knees to reveal my sturdy looking pegs. Crew socks in a space-dyed purple-brown-dark green (psst! Elizabeth: Smartwool!), my hairy legs, and those same tennis shoes.

Here is a side-by-side comparison of my legs in '92 and today. Reminder: I am 5'11" and currently weigh about 125 pounds. That puts my BMI at 17.4, thoroughly in the "underweight" category even now.

On a different topic, an interesting Google search led here today:

"what would I look like with no skeleton?" (This blog is, inexplicably, the fifth best hit for that info.)

And, finally, the news that I no longer rank in even the top 100 options for the Google answer to the search: replacement parts for older japanese vacuums

I am sad.

One more try for Sara

Big family dinner today. Blogging? This is all you get here:

Image description: Me and my twin again, skinny legs and all. We're posed against a wooden door wearing identical dresses with blue-and-red plaid miniskirts and sailor tops with matching plaid ties at the collars. Our blonde hair is tied in ponytails; we have bangs. We're looking straight at the camera. It's winter in 1974 and we're five years old.

Which one is me?

My fat (but actually very normal-sized) legs

Almost a year ago, I mentioned some good news about weight gain. Recall that I was starvation-level underweight just two years ago for a variety of health reasons, and also that I cannot just step on any old scale and balance on my pegs to see what's up, so checking my weight requires a clinic appointment and a rather amusing trek down the hall, out of the clinic and into the adjoining hospital to borrow an empty room with a bed that can weigh me. My primary, a couple nurses, a parent or two (and possibly some intrigued bystanders), watch as I transfer to the bed and we all discuss how many pillows and shoes will make the measurement inaccurate. Okay, there's no reason you'd ever recall the details of that last, but anyway, trust me when I say that checking my weight is An Event.

I am a little over 5 feet 11 inches tall and in November of 2005 I weighed less than 75 pounds. Then I got the feeding tube, and also the trach and vent. All three have contributed to my weight gain. The first in the obvious way, but the trach and vent help me get enough air so that eating isn't such breathless work. When I last got weighed this past spring, I was a joyful, thrilling 125 pounds. That is the most, by far, that I have ever, ever weighed.

And it feels good. I quit with the feeding tube liquid nutrients by night in hopes of not gaining too much and making it harder to transfer myself. And while I never eat much. I do eat all. the. time. It will be a gray day when my cholesterol finally forces me to eat like a responsible adult.

Image description: A color photo of the first day of kindergarten for me and my twin. We're standing in the front yard wearing identical homemade dresses with red plaid miniskirts and skinny stick legs. We have blonde bowl-cut hair and are squinting into the sun. And yes, those index cards pinned to our fronts are a cruel and humorless joke of my soulless mother: they have our names, homerooms, addresses and returning bus number printed boldly on them in case we got lost and were too stricken with the adventure of it all to utter our own names. Can you guess which one is me? My twin is barred from answering first.

I was a skinny child, and for most of my adult life I've probably weighed about 110 pounds. (Remember muscle weighs most and I don't have the ability to maintain and build that well.) I've always been skinny, with stick legs. I've gotten jealousy from other women and admiration from men for my underweight, weak-muscled thinness.

Image description: A color photo of me sitting in my scooter in a mall food court in Arizona, circa 1992. I am expressing my disapproval of impromptu photo ops with a sober look. I'm wearing a baggy white t-shirt to hide my scrawny arms and bony collarbone, but I'm also wearing a yellow flowered miniskirt and thong sandals because slim (bony) legs get compliments. I've cropped my Dad out, by the way, though he's wearing an identical expression.

And I've sort of been in awe of how my legs have changed in the past couple years. For the past year, every day, when I see them, I find myself thinking, "Whoa! There they are." Sometimes I think, "Chubby! I am actually chubby!" Sometimes I'm grateful for their relative strength. Sometimes I think, "Wow, I'm a bit fat."

I am totally not fat. I've been trying, these past months, to determine how much of my reaction is to the impressive change in my legs and weight, and how much is social conditioning about body image and what "fat" looks like. I can't separate it out. Most of us can't: you can check yourself on that by looking at Kate Harding's study of BMI classifications at Shakesville.

The above two photos are of my past skinniness. I don't have a photo of my legs as they are now and I'll give you a few days to imagine before I get around to that. They're no longer skinny and they'll never be muscularly toned, but they're also not at all fat. Even if I sometimes think that when looking down at them.

Question for all: Above, in paragraph two, when I mention "my weight gain" after having explained it was healthy and necessary, are you like me and still automatically think "weight gain" = "bad"? The word association is strong.

The wild life

It feels like winter coming here at the Gimp Compound. This past weekend, my father put up his little hand-turned wooden dish bird feeder and set out the winter birdbath on the back deck, which has been cleared of patio furniture for the season. The hand-turned feeder is about an eight-inch dish attached to a two-foot dowel and hung from the edge of the eave just outside the picture window I face when I enjoy my morning tea. The winter birdbath is heated, and wasn't plugged in at first, but the water froze solid yesterday, so it's a little birdy hot tub now.

The winter bird accommodations bring the wildlife right up to the picture window instead of 15 feet out at the oak tree bordering the back deck, though the suet feeder gets attached to the tree trunk for the winter and will become a popular lunchtime destination too. The past couple days there've been chickadees, nuthatches, juncos, downy woodpeckers, sparrows and finches at that little feeder a few inches from the glass. They eat a bit, then notice the shape of me through the window at a table about five feet away and they stretch and tip their heads to focus an eyeball in my direction with curiosity and concern. And they chatter to each other. Drive the cat wild inside. The squirrels look for dropped seeds under the feeder and sit eyeball to eyeball with the cat while she twitches uncontrollably.

Last week, the pileated woodpecker came to see if the suet was up yet. It wasn't. I sat with my tea, frozen motionless, while the massive 15-inch male crept up the tree trunk, peered with paranoia all around, then resignedly flew away. And today there was squirrel sex. Lots of it. In the oak tree, in the neighbors' oak tree up high -- a hundred feet off the ground. Much exuberant molesting of each other throughout the afternoon.

Life inside the picture window is much duller. Me, I'm exhausted from a night spent training a brand new nurse. All went great, but I never sleep well the first few nights with someone new around, so I'm tired and off to bed early tonight.

But check out my friend Grace's post on Wilma Rudolph. Wilma was my first hero. I read her autobiography when I was in grade school, and long before I identified as disabled or used a wheelchair I thought she was the most amazing person on earth. I'll do tomorrow's post now too, early, about another hero of mine.

Lately, at the Compound

I love unpredictability in my friends. People who say or do things it wouldn't immediately occur to me to say or do either intrigue or frighten me. Those who do not frighten me I often want as friends, and I've had some success in getting what I want in that regard.

In the past two years, I've learned that unpredictability is just about the last thing I want in the people who help me daily with personal care, trach health, vent upkeep, etc. I have 24-hour nursing assistance (the "nurse" part being required for state financing of assistance because I use a vent), and other than reliability and competence, predictability is what I crave most in my assistance. When someone is fluttering around me helping with suction or hygiene or other stuff that directly affects my person, the last thing I want is to be watching them and thinking "Now, what the hell are they doing with that?" Predictability requires less mental energy than astonishment or confusion and the less energy I expend with my assistants, the more I have for the rest of my life. And while predictability has been a little elusive at the Gimp Compound lately, it's not my biggest challenge.

It's been my biggest challenge these past two years to adjust to always always having someone present to assist me and keep me breathing. I don't go for strolls around the neighborhood alone, I don't stay home on my own for even ten minutes and I don't wander around the mall by myself. That's new these past two years. I'm a person who has always enjoyed being alone. I like my own company.

The idea behind this constant assistance is that my vent circuit could pop apart (as it does now and then) and no one wants to be responsible for my accidental death from lack of air and suffocation. I can breathe a little bit on my own, and in certain circumstances I can put my circuit back together again, but not so easily that it's a sure thing. So, the trade-off is that I get more supervision than your average toddler.

Having someone always waiting in the wings to assist is not nearly the luxury you might imagine it to be. Intimate discussions are weird with someone close at hand. Lively political debate at dinner always seems peculiar when a silent (and generally professional and discrete) presence sits in the next room. And, in fact, on days when the household has indulged in a big pot of chili it can be downright stifling to family entertainment.

Constant personal assistance is a serious challenge to privacy and personal autonomy, and I've learned a lot about myself and other people while trying to negotiate the space I need. My mp3 player is a key part of my "leave me alone" strategy. So is closing my eyes and pretending to sleep. If you can't escape people -- or even leave the room -- you sometimes must simply shut them out.

I first learned that two years ago while in hospital. If you can't walk away and someone is invading your space: be unapologetically rude. Ignore them. Wave them imperiously away. All young women should be taught this early. I can't believe it took a dire health crisis at age 38 to experience the freedom of blowing someone off when they're in your face and won't go away. Nice Minnesota girls just don't get that memo in their ordinary lives.

Predictability and privacy are linked. To be able to have assistance always around but not intrusive requires that assistance knows what to do without constant negotiation or discussion complicating the day. Home health care provides at least the hope of achieving that in ways inmates of nursing homes can almost never expect. No doubt those who do this care appreciate consistency too, since mistakes happen more easily in unfamiliar situations.

This is where my mental energy has been these past several months when I've been blogging much less. I've switched home health care agencies, said goodbye to four nurses, met and trained three nurses, and some other stuff I'll write about soon. I'm hoping to get back to writing more here this month, and I've joined up for NationalBlogPostingMonth to encourage myself.

Image description: The black-and-white photograph above is the upper back of a man with a tribal art tattoo across the shoulders and the following "tattooed" just below: "NaBloPoMo '07 Blog Free or Die" with a little skull image after the "'07".

Back

So, it was actually a lousy vacation. I've spent the bulk of my time with ugly digestive complaints or working through the various management issues of having a home health care agency up in my life 24/7. Or both. But anyway, there was good amidst the bureaucratic busy-ness and grumpy misery. Two highlights of my August were a family gathering in the far reaches of western Minnesota and meeting Brownfemipower while she was in St. Paul for the MALCS conference*.

The Gimp Compound inhabitants met with a dozen other Olsons, including the French branch of my cousinry, in the little city of Montevideo. We shared the courtyard of a great little coffeeshop with a local family where a father and a newborn son spent a few precious hours together while the former was briefly home on leave from Iraq. Poignant, that.

Brownfemipower and I met in the union of the University of Minnesota while my parents wandered around sucking up massive doses of alumi nostalgia. Like everyone I've met in person after getting to know online, BFP is just exactly herself, but more. One of the things we talked about was what candidates would be good for a Radical Hot Off of disabled celebrities. It shouldn't be, of course, but the question is deeply problematic: Mainstream celebrities people would be familiar enough to vote on don't celebrate their disability if they have one, disability is stereotypically seen as the antithesis of sexy, and iconic or noteworthy disabled characters in pop culture are usually performed in film by nondisabled celebrities. Our short list consisted entirely of Peter Dinklage. And while that makes the list perfection, I look forward to adding to it.

Anyway, I'm back.

* Mujeres Activas en Letras y Cambio Social (MALCS, Women Active in Letters and Social Change) is an organization of Chicanas/ Latinas and Native American women working in academia and in community settings with a common goal: to work toward the support, education and dissemination of Chicana/Latina and Native American women's issues.

Medical professionals who are excellent, asses and part of a failing system

My posse and I trekked into the Twin Cities this morning (despite threats of dangerous weather that have come true all around Minnesota over the day) because of a malfunctioning G/J feeding tube that needed immediate replacement. The balloon part that inflates in my stomach to hold it all in place had deflated itself and the damn thing was trying to come out, which it cannot really do without also pulling away from where it enters my upper intestine (jejunum).

This deflation and migration caused me some discomfort but not any intense pain, the hospital that installed it worked me into the schedule this morning and it was easily replaced. I returned home before people started sliding off the icy roads and all is mostly well with my world.

But there's this little drama that plays out each time I get the tube replaced and I've only just today discerned the pattern among the cast of medical professionals I spend about a half hour with -- usually every three months. The nurse who comes to get me in the radiology recovery room (for outpatient procedures I am unfamiliar with) is always male, which is fine, but curious since nursing is a predominantly female profession. He's also always incredibly personable and relaxing to be around, which I appreciate since he is my host to Events That Thus Far Have Gone Smoothly But Do Involve Medical Risk. This host has been several different specific guys in the past year, all kind and competent.

The x-ray techs are also mostly male in this high tech procedure, though today there was one woman present other than myself and the nurse I brought with me from home. These x-ray techs do non x-ray-ish things like sterilize my stomach with Betadine and arrange the surgical drapes. I expect the specialization of the nursing and x-ray tech requirements somehow explains the male predominance I've observed, but I don't know exactly how or why.

The nurses and x-ray techs have all always been reassuring, professional, caring, kind, responsive -- everything you want in medical people. The doctor shows up for five minutes to yank the old tube out and thread the new one in. The guy I usually get calls me "sweetheart" and comes and goes rather politely but quickly. He seems skilled, and I appreciate that.

But here's the thing: He's a total ass to the other people and, in subtle ways, to my nurse. It's not one isolated incident. He's displayed asshattery on several occasions now, belittling the employees under him at the hospital and treating my nurse like she and others like her are either negligent or incompetent. Today's deflated balloon and faulty tube, he asserted to my nurse, was the fault of her and others in my employ who just won't leave it alone and must have manually deflated the balloon.

The doctor discussed this with my private nurse out of my hearing, basically giving her professional chiding and advice without ever once consulting me about my care. It didn't dawn on me until today that not only am I just a body on the table that he does a quick procedure to and then leaves, but he doesn't even consider me a partner in my own care of the equipment he installs in my body. Perhaps because I have a nurse, I don't know. Maybe it's part of his abrupt pragmatism and crowded schedule, but I doubt it's as simple as that.

Meanwhile, the other employees of the hospital that he seems to consistently belittle and treat like dirt continue to shower me with thoughtful care. It's unlikely he's like that just when I'm around once every few months, right? This is a working condition for these other professionals that serve me well and might someday decide that they don't deserve this crap and move on to another job.

There's gender, ableism and a kind of professional classism at work in these dynamics I observe, and it's taken me a year of quarterly encounters and some quizzing of my nurse to get a fuller picture of it, since I'm not privy to all of it that occurs even in my specific interests. And this is an example of medical competence, really. In all ways medical, it's basically a successful encounter. And yet that successful-ness seems precarious to me because of all the power dynamics involved with this one doctor, and that's been on my mind all day.

Genni McMahon, who blogs at Ilyka Damen's, has had much more dramatic, critical problems with medical care on her mind today. Read it all, but here's a taste:

My mother became very ill the night before last with a high fever, extreme body aches, and weakness. She’s 62, swims three times a week and uses her Nordic Track everyday. She’s a partner in an accounting firm, takes no prescription medicine, and is a health nut. She couldn’t get out of bed, so my sister and I went to her house and called her doctor; he’s a skilled physician, but like most of the system, he’s a doc for profit. His office told us to take her to the ER. There, we had a really bad experience and they managed to nearly kill her, which I’ll share in a moment.

First, though, let me say that in spending the entire day in an ER, with momentary breaks to go get things from my mom’s house and take a kid from one caretaker to another, I noticed what I think is the absolute cornerstone of What’s Wrong With Healthcare In America. I’m sure you’re curious as to my discovery, so I’ll let you experience it as I did.

Red Robin and Armadillos at the Gimp Compound

It's warm today, and while the morning began with miserable fog that didn't bother me at all because I slept through its evil opaqueness, the rest of the day's weather has been slowly less dreary. There's still patches of snow a few inches deep in sheltered spots around the neighborhood, and, I imagine, gigantimous piles yet in local parking lots that I haven't visited lately.

I've been observing the flowers and birds.

There's been a robin in the backyard deciding how much of this neighborhood will belong to him. Yes, the first robin of spring. Or maybe he's pondering the embarrassing lack of privacy of last year's nest, on the light fixture next to the back garage door, unfortunately placed so we humans could all gather in the bathroom and gawk out the window at their precariously perched abode and its contents anytime we chose. We saw the nest building, some of the domestic negotiations resulting in three perfect blue eggs, the babies within hours of hatching, and the sibling rivalry just minutes before their first flights.

And I'm missing my blind junco bird friend who has not appeared at the sunflower seed feeder at all this past week. He was a loner, a bit unkempt, and his left eye had been tormented terribly by disease or injury. It was bald and featherless all around the little unseeing eye, which he kept toward the kitchen window so the other could see the world as he ate. He seemed perfectly competent in flight, ending up precisely where he aimed to go. So I'm hoping he decided to go elsewhere as the weather has warmed. I hope he'll be back here next year.

A lot of birds have little impairments if you take the time to observe. There's a grackle with a club foot, and another with some hip issues that give him a funny gait. Maybe they were injured in the vicious scraps they get into fighting over food. In any case, from what I can see they seem to manage well enough.

On flowers. Earlier this week I saw the orchid exhibition at the Minnesota Landscape Arboretum. I find orchids fascinating and particularly enjoy the varieties that have little arms outspread (like in this photo just above) because they're showy, but when the flowers get old the arms sag despondently. It's sort of human and sweet.

And then there are the amaryllises, or as my finely-bred family like to call them, the "armadillos." These are magnificent flowers that you can keep in a dark closet for most of the year, bring out and water in late winter, and watch them send up enormous stalks topped by blooms the size of dinner plates. Exhausted afterwards, they like to sit in the closet again. I had one on my windowsill at the rehab hospital last spring and recall in particular how one nurse's assistant who had just helped me onto the commode insisted on standing there next to me admiring the flower while I thought mean thoughts about her in hopes of driving her away.

We have five or six armadillos. I don't know why so many except that when you keep things in your closet, they sometimes tend to multiply.

(Visual description of three photos: The first is of a Phalaenopsis orchid, a bough of blooms in white petals with pink lines radiating from the center out toward the edges. The second photo is of a bough or orchid blossoms that have the nose and arms like the Lady Slipper orchid but bloom many at once on a branch -- the arms of the flower sag after the bloom ages a bit. The third photo is of two "armadillos" with big sturdy stalks and giant buds about to open.)

A letter to my Dad on his 76th birthday from... some enemies

Hey Old Guy Wearing that Ridiculous Hat with the Pom-Pom on Top,

Every day lately, you move those Bird Feeders around under the eaves. We see you. It won't help. It doesn't matter if the Giant Squirrel, er, Finch Feeder is under this eave or that eave, we will get to it. And we find the Giant "Squirrel Deterring" Cones sort of fun. They don't help you either. Now that we have taken to climbing the walls of your House, it is only a matter of time before we figure out how to get the Leverage to jump from where we hang by our back feet at the top of the windows to Any Feeder, Any Time We Choose. Then you will have to constantly threaten us with the use of The Shotgun. We don't believe you about that. That would be Illegal in city limits and we know this as well as you do. Illegal. Hah hah.

Yes, we gave up on the Giant Platform In The Sky Feeder after you sawed away the last oak branch we could leap from. Yes, it was very clever to put a platform for the Birds on a 30-foot pole in the middle of the yard. Yes, we know you conspired with Your Brother to weld a big metal barrier so we couldn't climb the post. (Our Brethren to the West are after him too, by the way.) Do you think We don't have family connections? We have bribed The Pileated to visit you just often enough that you keep the Suet Feeder full at all times in case he might drop by. Those Mourning Doves that have begun to roost in the tree all day? They belong to us. They drop seeds to us from the Giant Platform. And if you start any more trouble, they will just start Pooping up a storm, right there in the tree over your deck. Hah hah. Our deck.

It's true, the Peanut Feeder drives us to distraction. We can smell the Peanuts from our perches on the other feeders, eating seeds til we're Fat and Happy. We smell those Peanuts in our dreams. And we will have them. We will leap any boundary. We will chew through whatever you put them in. Meanwhile, the Nuthatches fear us and drop bits for us to eat. That's why they hang upside down, you know. To keep an eye on us because we will find them and Hurt them if they don't share the Nuts. The same should go for you. Shame on you for trying to keep Nuts from Squirrels. That's wrong.

Our latest plan is to turn the Cat against you. Your Cat. Hah hah. What do you think we say to her when we are nose to nose at the window? Why do you think she comes running to us when we tap at the window? She is under our Control. Watch yourself. Our influence is in your house, sleeping on your bed by your Feet. It is only a matter of time.

We will Defeat you,
Da Squirrels


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Visual description of photos: There are three of typical Midwestern squirrels. The first is simply looking straight at the camera from a thin tree branch, tail up, challenging. The second is just a squirrel's face to the camera, but he is wearing a tinfoil beanie -- to keep out the mindrays, you know. The third is a photoshopped pic where the squirrel appears to be wearing a zippered squirrel suit with a Superman suit on underneath, visible through the open zipper. All were found online: 1) http://www.mdwfp.com/Level1/wildlife.asp?subject=Squirrel 2) http://tijil.org/SCO/source/afdbtest.squirrel.html 3)http://www.allfantasyart.com/photomsupersquirrel.shtml

Anniversary -- Escaping institutionalization

This Tuesday, March 6, was the one-year anniversary of my returning home from my four-month hospital stay. What makes the date so important is that my insurance company tried very hard to have me sent to a nursing home after I'd been at the rehab hospital for two months. I was progressing with occupational and physical rehab, I was attempting to wean off the vent, and I was learning how to speak with the trach and ventilator. I was gaining weight -- up to 92 pounds from my low of 75 when I entered the ICU in November 2005.

Had the insurance company gotten it's way, I would have gone to the one nursing home in the entire Twin Cities they considered "in network" and accepting of vent-dependent clients. And I firmly believe that would have led to my death -- quite possibly in this past year.

From the beginning of my medical crisis, my parents and I had talked about how we would try our best to adapt to my changing needs -- the increased need for skilled assistance, the steep learning curve for the vent, trach and feeding tube, the medical bills threatening their financial security as well as mine. The insurance company assigned me a case worker. The hospital social workers helped us begin to navigate the system for state and federal aid. I signed over the title of my van to my folks, an act that terrified me because of how necessary and tenuous being asset-less appeared to my survival. (It's back in my name now, but at the time it was suggested as necessary.)

While I was busy at the rehab center with the minutiae of movement and breath, my parents were working to secure a home health agency and nursing care with state funding approval. Then, one morning, my Mom got a call from that insurance company case worker.

"I've got good news!" she said. "We're moving Kay to a nursing home that's closer to you so you won't have to drive so far to see her! The home is sending someone to assess Kay today!"

This is a person who knew we were working hard to get nursing coverage for me at home. And I don't know how long the insurance company had been planning to drop this bomb, but because I didn't have a telephone in my room (or, really, the ability to speak into it), she was basically telling my Mom the bomb was about to be dropped on me. My parents say they raced to the hospital -- a 90-minute drive -- to keep it from looking like they had decided to ambush and abandon me.

When I was in ICU at first, I was intubated with the breathing tube in my mouth and down my throat. For various reasons, including the Thanksgiving holiday and some scheduling around it, I was intubated for about three weeks and conscious for all but the first couple days before surgery to install the trach at my neck. Intubation by mouth is very painful on the jaw and tender throat. And frightening. During that time -- November 2005 -- I shifted emotionally from wishing I could die and stop the misery, being overwhelmed by the small kindnesses of people and the company of friends and family, and compulsively wondering if this was leading to the end. I was sure it was not, despite my on-and-off despair. I've had pneumonias that felt very deadly and like I might be rattling my way toward death, but this felt like a living transition that I would survive.

And yet, three months later, after the hardest-working, most character-building time of my life, when my parents rushed to my room at the rehab hospital to tell me the insurance company was planning on sending me to a nursing home, my absolute first private thought was, "So this is going to kill me after all."

That's not just drama. I've made a study of how institutionalization leads to the abuse and death of disabled (and elderly) folks -- especially those using ventilators. Like we feminists follow the state of reproductive choice, I have followed the freedoms and lack of them for disabled people in institutions. Abuse and death in institutions has been a theme, along with the basic immorality of warehousing people, in small activist publications like Mouth and Ragged Edge for decades.

As details about this particular facility I was slated to enter became known, it became clear to everyone I talked to at the rehab hospital that being there would likely endanger my health and most definitely halt and reverse specifics of the work I'd done in physical therapy.

As it happened, the one person at that nursing home responsible for assessing incoming inmates was away on a holiday in the tropics and did not visit me that day the insurance company woman said he would. My parents were able to break the news to me, and there would be a weekend reprieve. We learned more about the home in that time -- this home that none of the doctors, nurses, therapists, or RTs that I quizzed at the rehab hospital had any familiarity with. They couldn't recall sending any other patient there, though that was possibly due to a name change, I don't know.

Here are some things I learned about this nursing home I narrowly escaped being sent to, from my parents' on-site tour and my doctors' communication with the facility:

There was a vent wing with about a dozen people there using ventilators to breathe. When my parents visited in mid-afternoon, all these people that they saw through open doors were stuck in their beds.

I was slated for the last room at the end of the hall, as far as you can get from supervision and assistance.

There was no internet access anywhere available to inmates. And no TVs in the rooms. Patients were expected to provide their own if they wanted something to do while immobile in their beds. I suppose this is true of most nursing homes? I don't know.

There was a dining room, but when my Mom asked the home rep if I would be eating in it, she was told it was doubtful. Because of the vent, the woman said, unless I had someone of my own to assist me, I would be staying in my room for meals, and likely for everything else.

Much of the population was warehoused homeless people, probably mentally ill as well as formerly indigent, whom no other place would accept. My parents deduced that a young woman (okay, middle-aged) who cannot walk and is stuck in bed on a ventilator at the end of a long hallway without the power of speech might be vulnerable to physical attacks from mobile, minimally-supervised people with mental issues of their own.

There were RTs (respiratory therapists) on staff but all of them were off-duty every day from 3 p.m. until the next morning. (With my body adjusting to the trach and vent at that time, I was experiencing frequent "mucus plugs" that completely blocked off my airway and required immediate suction relief -- all of these events occurred for me at rehab during evening and night times. More than a dozen times I experienced these plugs, which often hit without notice. Once, I blacked out completely while the RT worked to clear my airway -- and this occurred with a night-duty RT who came immediately to my vent alarm from a desk just a few yards from my bed.*)

The ventilator I would be required to use would not allow for any weaning and would not be portable on my scooter.

I might not be allowed to use my own scooter, which in any case, would be of limited utility without a portable vent.

There was no physical therapy available to help me maintain or increase my strength, which I'd been working on daily to rebuild.

This was the only "in network" option my insurance company was giving me. Without home nursing assistance yet in place, the rehab hospital would not allow me to go home, but the insurance company expected this place would be suitable. My parents were so afraid for my safety and health that they were planning to take turns sleeping in the nursing home room with me, fighting whatever policies might prevent even that. The home care agency we were working with was racing to hire nurses, but expected it would take three weeks to a month.

It did take a month to get the nurses for home care -- and even then, only partial coverage. In the meantime my respiratory health took a little dip, likely because I was crying quite a bit from all this. Concerned, the rehab hospital doctors would not release me to the nursing home, the assessment dude never showed up, and one day, quite suddenly, the insurance company called the social worker and completely relented with the institutionalization plan. I'm sure this is because I had people: my parents to speak for me when I literally could not and wouldn't have had the energy or heart anyway, doctors and RTs who I was awake and conscious enough to build a relationship with so that they perhaps fought a little harder for me in a battle they faced with insurance companies daily. I had resources to keep me from that nursing home I believe would have caused my death. Other people do not.

This one-year anniversary reminds me of how very afraid I was to leave the hospital and the trained professionals behind for my parents' newly-learned suctioning skills and nurses we newbies would have to train. I'm home and happy, though unemployed and baffled as to how anyone who has to manage full-time assistance does anything else useful with their time. I'm hoping to figure that out in the coming year. This is a bittersweet anniversary to celebrate when I understand how very very lucky I am, and how the story is much different for other people who do end up in nursing homes and other institutions.

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* Because of medication, adjustment to the vent, and a lowered cuff that prevents sudden total blockage, plugs are not an emergency I have had for about ten months now. This is the result of a lot of hard work and vigilance on my part. Conscious, alert, and in charge of my own health care here at home, I can weigh all the factors and adjust medication that prevents plugs, refuse meds if I don't need or want them, ask for suction, request more or less water in my cuff -- all without being institutionally "noncompliant" or having something decided without my input or consent. Until I was able to verbally express these wishes, my written communication was respected and "heard" by people who my family and I were able to assure cared about my preferences.

Cross-posted at Echidne of the Snakes. Check for more comments and discussion over there.

Like a lion -- A rant

Last weekend we got 15 inches of snow here at the Gimp Compound. Since I'd managed a successful Parts Replacement Event with my feeding tube just a few days before and had no place I needed to be, a snow day or two was cool with me.

But this week. This week has been more of an on-going adventure. Tuesday, a family member wandered over to the local Menard's and tripped over some poorly-placed lumber, cracking bones in her wrist and knee, spraining an ankle and breaking a toe. Half my nurses -- those who are licensed LPNs attending the local college for their RNs -- are bogged down in what appears to be a departmental failure to provide the needed education. A suddenly-changed school policy requiring they do their online computer homework at the college instead of at their convenience means that one of my nurses has had to cancel a night shift, which means my gimpy relative with the weak bones has two nights per week to try and help me in ways she can't possibly, at the moment.

And the snow plows have given up for now. Visibility is too low. Tonight's nurse made it here over slippery roads. Hopefully tomorrow will see the roads clear. In the meantime, my back-up batteries are ready in case the power goes out. I can last for 16 hours on them, if I need to.

And yet this is not the most distressing news of the week. My medical supply company called today to say that Medicare will not allow them to give me more than 90 trach suction kits per month -- that's three per day, when I always need an average of maybe five, and some days easily nine or ten. Trach suction kits consist of sterile gloves, a sterile container for the sterile water used to lubricate, and a sterile plastic catheter that slips down my windpipe to suction up the lung gunk that bypassing the upper respiratory system triggers my body to make. The catheter is connected to a little vacuum machine that provides the suction. This is the key service my paid help must provide in a sterile format in order to keep me, or anyone with a trach, healthy. Without suction I will literally drown.

And I cannot pay out of pocket for what Medicare will not cover because that would mean I do not need the state to help pay for my nursing help. Have I mentioned that while most all of my nurses have needed to be trained to do this suction (because it is not a basic skill all nurses learn to qualify as nurses), the state nevertheless requires that nurses be provided if it pays for my help? I'm happy with the women who work here -- though we need twice as many of them -- but their required qualifications do not mean they are trained to do what I require. And of course, they cost more to employ than a non-nurse who would have to be trained to suction in the same way. And with the shortage of available nurses, I do not have the staff that I need.

The Medicare rules about three suction kits per day are not new and do not affect only me, of course. As I understand it, I can get some sort of medical waiver through my doctor certifying I need to not drown and must have suction available when I need it instead of just three times per day, rain or shine. Apparently that waiver will be required attached to every sale of every kit beyond the allowed amount for as long as I need them, which will be until I stop breathing, basically. Somewhere there are people paid to look at these waivers all day, in perpetuity. From a listing of these rules:

If Medicare determines there is medical necessity, the standard allowable for the following items are listed below. Medicare may sometimes approve larger quantities, but that decision is made on a month-to-month basis by the individuals reviewing the claims. They may approve larger quantities one month, but disapprove them a different month. For the most consistent reimbursement by Medicare, you may want to consider placing one order per month, staying within the limits listed below.

My orders to the medical supply company are already monthly. I have no idea how complicated getting this waiver and getting permission for the medical supply company to give me extra kits will be (is there a special form? can I get kits on credit in the meantime? will I need to get a doc to sign the form every single month for the remainder of my life?), so it's a lucky thing I have a few extra kits just now. As I said, I cannot buy out-of-pocket what I need to breathe because my state-paid nursing care would be cancelled altogether.

As far as I can tell, this is how it works. You qualify for Medicare, and muddle along until one of the obscure rules bites you in the ass and threatens your life. Then you see what you can do to survive. Or the system fails you.

It's not a matter of wise or difficult funding choices. No one is out there allowing sterile catheters to be shoved down their windpipes willy-nilly, recklessly suctioning when they don't really need cleaner airways. The kits I currently use cost about $5 each, which, let me assure you, is peanuts compared to many other innocuous pieces of plastic that I also require. If I didn't have enough kits, or had to use non-sterile equipment that caused an infection and forced me to go to the hospital, my Medicare would kick in to pay for much more than a few extra measly kits per day.

And I finally saw my pulmonologist yesterday, for the dizziness of seven weeks ago, which has abated almost completely now. I think it was caused by weaning off Dr. Perky's Effexor. I confirmed that I more or less know what I'm doing with the ventilator settings, and a blood gas proved all is well. (A competent RT had absolutely no trouble making me bleed.)

I like this doctor, and we discussed a drug I use in a nebulizer that the pharmacy has insurance reimbursement problems with. The pharmacy will only give me the big bottles of the liquid medication (30 ml as opposed to 4ml bottles), which then expire and must be thrown away before I have used half of each bottle. Half my prescription goes into the garbage because of the size of the vials I'm sold. Then my monthly prescription runs short and the insurance company freaks out because I need more too soon. I will try to wean off that drug, if I can. The doc says that's best anyway, and may be possible. Or switch to mail order drug supply and see if that doesn't work. (Incidentally, this drug -- Mucomyst -- keeps the lung gunk from getting too thick, allowing me to need less suctioning.)

None of this is about insurance or Medicare providing what I medically need or even necessarily saving them money. It's about policies that don't fit individual needs and apparently are not to be budged.

Do not even get me started on the single-use sterile saline bullets sometimes used to dilute thick lung secretions so that suctioning is easier and causes less trauma. Medicare simply states they are not necessary and will not be covered at all. They were used frequently at the first-rate rehab center that taught me what I need to know to keep myself healthy. I have some in a box here, and use one or less per day. Now I learn they are completely unnecessary and the comfort I have noticed from their use is a figment of my imagination.

Gah.

Random Parts Replacement Fun

Ventilator traded in for one which does not randomly turn itself off:

Check.

New ventilator's obscure nonprescription default settings changed (by an adventurous nurse!) to match the other one I have here at the house so that I can use it without getting an immediate headache:

Check.

Trach changed by my mother while the local doctor watches so that she can stop having nightmares about what might have gone wrong during the emergency switch last month:

Check.

Appointment to get my scooter fixed so that it will stop drifting backwards randomly and risking sudden trach/vent tube crisis:

Check.

Plans with a local welder to fix the rack that holds my vent to my scooter so that it will stop threatening to fall off randomly:

Check.

Appointment for routine feeding tube Parts Replacement Event:

Call tomorrow.

Whew.

Neglect

Yesterday's list of glorious gimpiness failed to mention my fabulous elbows, one of which I lean on to type. Today it registers jealousy with a painful infection probably caused by a disintegrating armrest on my scooter harassing it for some weeks now. I'll not be typing much until it heals, since my gloriousness does not currently include patience for typing with just one pinky to avoid my usual position. The new armrest is due here next week.

Like a sieve, only not so much

I had that ABG draw this morning, as scheduled, to determine if recent dizziness is caused by my ventilator settings or something else. That went well. An RT I'm acquainted with did it cautiously but easily and with very minimal pain. It had to be done by her in the local hospital rather than the adjoining clinic because, well, I don't know. Fear of arteries, I guess. But it was good to see her (except for the "aww, look at poor you on the vent" part) and tell her I've felt very healthy and appropriately-oxygenated or whatever since I got the hole in my neck and all.

For reasons possibly due to Gimp Compound breakdowns in communication, I also had an appointment for a regular blood draw to examine my levels of potassium, magnesium, and other yummy -esiums that were dangerously low a year ago. They were checked six weeks ago and I've been choking down lots of bananas and potatoes and other starchy colorless joys since then because those levels were only borderline acceptable. If French fries qualified as hot and greasy little mediums for the -esiums, this dietary addendum would be more fun. If I ever did get a thrill from a banana, that joy was killed last year when I was eating two each day for months to get the potassium up.

The ABG was what I really thought I needed, but I went along with this extra blood draw because, well, when six people are involved with arranging your clinic visit and you wish to live in harmony amongst them, what's a little poke with a needle. And maybe I could ease off on the bananas if all went especially well, right?

Things looked worrisome when the clinic receptionist said, "Hmm, this appointment was for yesterday. Have a seat in the central waiting room and we'll see what we can do." See what I mean about harmony at the Gimp Compound? Which of us screwed that up? Shhh, never mind.

I didn't wait long to see the Woman-Masquerading-as-a-Phlebotomist. I spent that time listening to the sick dull ache of my right inside wrist. Those nerves around arteries know how to discourage activity in their territory. I knew it wouldn't last too long, but it's a uniquely-flavored pain. I once had an RT take an ABG without me feeling the stick at all, which shouldn't be physically possible, but I enjoy contemplating the perversity and competence of that moment from time to time.

When called upon in the clinic waiting room, I did everything I could for the WMAAP. I told her past successes in springing healthy leaks in me usually involved the "butterfly needle," tiny enough to match my little veins. I sent her confidence vibes. I sat calmly while she dug around in the crook of my left elbow, the edge of my left wrist, and had a friend dig around the top of my right hand.

Then she pronounced me too dehydrated to bleed and told me to go away and come again another day.

No, really.

In the many hundreds of blood draws I've had in 38 years -- including some very unpleasant situations when I was actually sick and dehydrated -- individuals have sweated, apologized and passed the needle off to colleagues, but no one has ever told me it was not possible to make me bleed.

"You have no available blood today. Sorry. Go home."

Actually, since I had gotten the ABG I believed was important, and we had reached the limits of my commitment to family harmony, I was prepared to tell them to back away with their needles anyway. But still.

The pain from the ABG has abated almost entirely now and there's just the most minute sensation in the nerves to remind me that anything happened there at all. The other needle holes in my hands and arms hurt and are bruised blue. I did get results of my ABG and though I haven't yet talked to my primary, apparently the numbers look good.

I wish I'd had the chance to see my doctor's face when all this occurred with the WMAAP. She sometimes surprises me with hilarious breaks from her stoic, thoughtful professionalism, and I'd like to have seen which way it would go today. And who she would have found to get the job done, because she would have found someone or elected herself.

In the meantime, more bananas.

Friday at the Gimp Compound or Dizzying up the Girl

So, about ten days ago, my trach's cuff burst. In my throat, in the middle of the night. And just for fun, this happened when I was just coming down with a virus of some sort and happened to be sitting on the toilet. I was with a new nurse -- new to me and new to the profession, so she'd never seen a trach switch before. And my Mom had never done one, but we woke her up for the opportunity. Dad was there too -- it was an exciting event for us all.

But it went very well. When I'd last had a scheduled Parts Replacement Event, I'd asked the doctor to show both my mother and the nurse present how to do it. We were mostly prepared. We only lacked sterile lubrication to make it easy to slide the new one in. But in the excitement, we didn't pay the usual attention to the exact amount of water to fill my cuff comfortably with.* And we didn't adjust the strap around my neck just right -- because I have a scrawny neck, the trach can be shoved in too far so that it curves against the back wall of my windpipe and the opening is curved up against the front of my windpipe, which both hurts and impedes delivery of air.

What with the virus and this trach switch requiring fine-tuning for optimum breathing and comfort, I've been pretty dizzy the last ten days. Oh, and I've just finished weaning off the Effexor Dr. Perky placed me on in rehab, so that might be contributing to my dizziness too.

I've got an appointment for a blood gas** next week and I've spent part of today with the cuff filled beyond speaking-capability in order to better approximate the exact settings I used in the hospital, which is when I was last monitored by RTs and a pulmonologist. I've been the vent expert in my life since I came home with the machine last March.*** Ironically, state-paid home health care for a vent user requires hired nurses, but nurses are not trained in the specialty of vent management unless they get special training to be ICU nurses or the like. Nurses also are not typically allowed to do trach change procedures, though obviously it is necessary that they be prepared to step up in a setting like mine if I need one in an emergency.

Respiratory therapists get training on ventilators, what the settings all mean, how they effect a patient, and they learn to do trach changes and take blood gases (and do the lab work) as part of their routine in a rehab hospital like I was at. I very much enjoy the individual women who are employed as nurses for me, but geez. The rules don't quite fit the purpose and I need an expert just now.

Oh, and there's a new nurse coming to work here tonight. I don't know if she's ever done suction, worked with a vent, or what. So finding that out is my job tonight. I'm dizzy and tired and fed up with these regulations that don't really give me the full expertise they claim they do.

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* The cuff is the inflatable part of a trach that puffs up in the windpipe to ensure that the air going in the tube gets to my lungs and doesn't go upward and out my mouth and nose instead. The trach I currently use, a Bivona TTS, inflates the cuff with sterile water instead of air, which other kinds of trachs use. So when it burst, I immediately got about 7 or 8 ccs of water in my lungs in addition to not getting the vent air where I needed it. And we added about 5 ccs more before being certain the cuff was blown.

The photo above is the Bivona TightToShaft trach kit, which includes the trach itself (top left), the obdurator (shaped in a gentle curve like the trach, it's hard plastic that fits inside the trach tube to help with insertion), and the wedge or "tooth" (top right, used to unhook the installed trach from the vent tubes for suction or getting on clothing). The red cap to seal off neck breathing while leaving the trach installed and cheapo trach tie I do not use but both are also in the picture above. You can't really see the cuff, but it looks just like a little condom on the end of the naked trach. The tiny photo inset shows the cuff inflated.

** A blood gas (or arterial blood gas, ABG) is a blood draw taken from an artery in order to measure oxygen, carbon dioxide and other stuff. In this case, it helps determine if my ventilator settings are giving me too little or too much air.

*** When I say that I am the vent expert in my life, I mean that I know more than any person who comes in contact with me -- including the dude from the medical supply company who is supposed to come monthly and do a maintenance check on my machines. I know what the codes are for the various alarms when they go off, I know what the settings of frequency, sensitivity, tidal volume, expired tidal volume, PIP, PEEP, MAP, etc. all mean generally and in terms of what I suposedly need. I know how to cancel the alarm and change settings depending on if I am getting sufficient air, which varies according to how full the trach cuff is. I know that a high pressure alarm usually means there is condensation in the sensor tubes and I know the ways to fix that. I'm happy and proud I have learned all this in the past year, and it was my responsibility to do so, but given that I am required to have nurses in my presence constantly in order to receive state aid for home care, I am not thrilled that I know more than every single professional around me and that their nursing training does not mean they bring the actual vent machine expertise to the job.