Archive for the 'Making Disability Visible' category

Where's Zuska?

Perhaps my three remaining readers have been wondering just that.

(BTW, thanks Cara, for yelling at the spambots for me in my absence.  I cleared out a bunch of spam and then moved your comments since the spam was no longer there for you to be yelling at.  If you want me to put them back I will, just leave a comment here.)

The short sad story is that since the end of January, I've been beset with migraines on a daily basis.  I think I've had maybe a week's worth of days scattered here and there when I didn't have headache for at least some portion of the day.  Sometimes when Mr. Z asks me if my head is hurting I have to think about it for a minute because I can hardly remember what it feels like for it not to hurt.

Today I was good until about fifteen minutes ago, and now the headache is starting.  Yesterday I was sick all day and missed Easter with Mr. Z's parents.

Anyhoo, I tell you this not to garner murmurs of sympathy, but to let you know why this blog has been so silent.  I just have not had the energy or enough time without headache to put together a blog post (or even clear out spam).  Expect posting to be highly erratic, if at all, in the near future.

I am hopeful, though, that I may soon get the migraines under some control again.  This all started with a strained rotator cuff.  The docs figured the chronic migraines + poor posture + sleeping on left side added up to strain on the left rotator cuff.  I began physical therapy for it, and suddenly the migraines worsened despite a fresh botox treatment.  So then the docs figured that the work on the muscles, which was good for the rotator cuff, was affecting nerves in some feedback loop and causing migraines.  Get it?  Migraines lead to strained rotator cuff, and fixing strained rotator cuff leads to migraines!  Yippee!  Another factor was the absolutely bizarre winter we had, unnaturally warm and very changeable from day to day.  Rapid weather changes almost never play nice with the head.  It was all a big mess.  By now, though, I've mostly got the rotator cuff under control and am getting PT for the migraines - who knew there was such a thing?  But it does seem to be helping - sometimes a day and a half or even two days relief after a session.  And coming up soon, my next botox treatment.  Maybe by the beginning of May I'll be back to my old regular migraine schedule and can pick up blogging again!  Keep your fingers crossed!

Even though the  PT is working, and even though my insurance says I get to have 60 PT visits in a calendar year, it turns out that after you go 25 times they put you under "review".  This means they stop paying for your PT while they think about whether or not you really deserve to have health care.  One to three months later, when they finally decide whether or not you are worthy, the decision comes forth: either they pay for the PT you've been getting, or you are stuck with the bill.  Of course, you can wait three months for them to decide, but if you can go three months without PT, did you really need it in the first place?  This is known as "having generous PT coverage" in your health insurance and one should be grateful for it.  Pray to be fixed by visit 60, and not to have anything else go wrong the rest of the year. Also pray that the insurance gods consider your rotator cuff and migraine issues separate enough that they will allow PT for the migraine even if the rotator cuff seems to be mostly (though not completely) cleared up. While you are doing all this, brace yourself for the next round of begging said insurance company to cover your botox treatments, because Treatment No. 4 of the alloted four treatments is this month, and you have to convince them again that nothing else works and you really do need botox and you weren't magically cured in the past year.  Good luck!  And try not to be terrified when you see an ad from your insurance provider promising to help companies "manage" the "5% of your employees responsible for 20% of your healthcare costs".

Well, thanks for listening to the whining.  I hope to see you back here soon, with more cheerful sorts of rants and commentary.

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Evaluating Eldermobiles

There are several pieces of paperwork I MUST get done today, there are a dozen blog posts I want to write spawned by sessions and conversations at SciO12, there are groceries to be bought if we're to eat tonight, and I have a migraine, so I really should be in bed with the lights off and an eye pillow draped over my forehead.  Yet this bit of a topic has been nagging at the back of my skull for days (maybe it's the source of the migraine!) and I just have to write it out.

I had always wanted a Beetle but never thought I'd get one.  I drove hand-me-down cars, or practical cheap things with good gas mileage, because cars are just transportation to get from point A to point B. And I can't tell them apart, aside from "this one's red and that one's black".  Except for the Beetle.  I loved the Beetle. I just didn't see myself buying one.  I would drive my Mazda 323 till it died, and then get some equivalent replacement.

But in October of 2001, the world as we all had known it had fallen apart. There was no point in being practical. Or waiting for my car (or myself) to die.  One day on a whim I walked into a dealership and there she was.  Sapphire, the Uppity Blues Beetle.  I fell in love, paid sticker price for my 2-year-old baby, and drove her off the lot.

Kids waved at me, other Beetle drivers honked their horns, perfect strangers asked me how I liked driving that Beetle.  It was a fun car.  It was also a pain in the ass.  The electrical system had a mind of its own, little plastic bits and buttons periodically fell off and had to be glued back on, the glove box door, for Pete's sake, had to be replaced.  Sapphire was high maintenance, that's for sure. But I loved her.  And my mom loved her, too - because she had leather seats that were easy to slide across, and because she had a bar across the glove box area that mom could grab onto when she was getting into the car.  With the back seats down, there was plenty of room to stash mom's wheelchair and her walker, too, plus any other stuff we needed to take along for the day.  You had to life the wheelchair over the rear lip when putting it in or taking it out, but all in all, Sapphire was a pretty darn good eldermobile.

Sometimes I flew to see mom rather than drive and then I had to rent a car.  Any car with cloth seats was a loser right from the start.  Elderly people just cannot easily scooch and slide across a cloth seat.  Leather or faux-leather is what they need.  Sometimes I would get a PT Cruiser and my mom would be ecstatic.  It had the handy grab bar like my Beetle (see here, scroll down).  It was just the right height - not too high, so easy to step into, and not too low, so easy to get out of.  Definitely plenty of room to stash the chair, walker, and other gear.

One sad day, Sapphire got creamed by an asshole in a big black SUV doing 50 mph on the shoulder of the road who literally ran right over top of my car to get back on the road.  Maybe you could have fixed her, for the price of 1.5 new cars or so.  The insurance company handed me a check and Sapphire got hauled away to be cut up for parts.

Now I needed a new car and I was in a pickle.  One, I don't like making decisions about big purchases like this.  Two, I needed to decide relatively quickly because I had no car. Three, I had very specific needs I wanted my new car to satisfy.  Four, I'd had Sapphire for almost ten years and had paid absolutely no attention to cars during that time.  I had no idea what was out there, how much cars cost, where to even start looking.

Naturally, I began to crowdsource a solution to my problem.  Everyone had great advice to offer.  All kinds of advice.  I had more options to consider than I could keep track of.  Mom was not offering "advice" - she knew what worked for her and told me to just go buy a PT Cruiser. During the car search time I twice rented a Chevy HHR to go see mom.  She liked it almost as much as the PT Cruiser except it had no handy grab bar.  It did get great gas mileage and I could get the wheelchair in the back without putting the seats down if I had to, which meant I could take both mom and Aunt Betty to the Ice Plant for lunch.  So that was a bonus.  Mom still favored the PT.

I went to dealerships, I looked at cars, I test drove cars.  I looked at the Toyota Matrix, RAV 4, and Prius, the Scion xB, the Kia Soul and Sportage, the Mazda 5 Minivan, the Chevy HHR, the PT Cruiser, the Subaru Impreza and Outback, and I don't remember what all else.  I looked at new and used cars.  I made lists and did comparisons.  I test drove, I did online research, I made up my mind, and then I started all over again.

I felt the openings on the Matrix and Impreza were too small - too hard for stiff bodies to get in and out.  Not enough storage space in a Prius, and the RAV 4 and Mazda 5 seemed too high of a step-in, as did the Sportage.  I liked the Kia Soul a lot, but ultimately felt its rear opening was a bit too small - didn't want to have to fight to put a wheelchair in the back.  I was really leaning toward the HHR because I had driven it and liked it, and the gas mileage was fantastic but Mr. Z was very set against it.  He felt the interior looked a little too cheesy, was concerned about plastic parts falling off a la the Beetle, and wondered how resale value would hold up. I couldn't find an HHR or a PT with leather heated seats, which I really wanted. In the end I bought a used Subaru Outback which had every feature I wanted save amazing gas mileage.  It has leather seats, and seat heaters - very comforting to mom's achy back in cold weather.  It has dual climate control so she can be toasty and I can be cool or vice versa. The back just swallows up her wheelchair with room to spare - I've put her transport chair and her walker in there with it as well - and there is no lip to lift it over.  Furthermore, the opening of the back is low, so one does not have to hoist the heavy equipment up high. The back is spacious enough to hold all the gear without putting seats down so I can take mom and Aunt Betty together to lunch.  (Or my mother- and father-in-law.) There are two great cup holders in between the driver and passenger seats, as well as a spacious storage box - roomy enough for mom's special sunglasses or her water bottle.  Alas, there is no handy grab bar across the front but because of the height of the passenger seat, mom can back up to the seat, sit down, grab the handle above the door, and swing her legs into the car.  The door opening is large enough for her to do this and for me to assist her.  The car warms up quickly in cool weather, cools down quickly in summer heat.  And it handles fantastically over the mountains between where I live and where mom is.

The AARP offers some advice to caregivers on choosing cars, but I did not find it particularly helpful.  It is very general, and some of the car models they mention I would consider to be difficult for elderly people  to enter and exit.  If you have narrowed you search for a car down to two or at most three vehicles, the best thing to do would be to take your elderly person along with you and let them try getting in and out of the car.  See for yourself how easy it is to put the wheelchair or transport chair or other gear into the car.  I was not able to do this because mom and I live so far apart so I had to measure and guess.

Another good thing to know is that if you have found a car that you think will work for you, but it doesn't come with leather seats, you can get leather covers made for them at a reasonable price.  A good site for used car information is TrueDelta.

For some years now, car makers have finally become aware that women drive cars and that kids are often in the cars whether women or men are driving.  It would be nice, as our population rapidly ages, if they began to pay some special attention to car design that works well for caregivers and the elderly people they transport.  Or caregivers and the not-so-elderly but people with disabilities that need transport.  Universal design, is what I'm asking for.  We're starting to get there in home and apartment design.  But cars are still things we are supposed to fall in love with, things that make a statement about us.  Not practical things that can help us help anyone get from point A to point B.

I loved my Beetle like a teenager - it was shiny, it looked cute - but I love my Subaru for its comfort and functionality. It annoys me when people ask why I got such a boring car or why I'm driving a mom-mobile. If my car is supposed to make a statement about me, then my car says I like old people and I care about their needs. My car is an eldermobile. I get the most compliments on my car when I am helping my mom in or out of it outside the assisted living home.  People there look at cars in a different way.  And my mom always says proudly in a way that makes me want to cry, "she bought this car just for me!"  I'm guessing I won't see Subaru advertize anytime soon how great its Outback is for transporting old people, because we live in a youth culture, and so the Outback must be about youthful adventurous types leaving it all behind and getting to the rugged outdoors.  It could be both, if our culture didn't look upon the elderly with so much fear and loathing.

Car makers are selling us youth and sex - that's why there are always so many hot babes draped over the vehicles in ads and at car shows - and they don't imagine anyone is going to want an eldermobile.  No, the car is supposed to help you stave off age and death, not transport it to the cardiologist.  I don't imagine we'll be seeing eldermobiles on the market anytime soon.

 

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Things I Found Ponderable: #scio12 Report the Second

Gather round, Zuskateers, and you shall hear the tale of Clang!2 - White Privilege.

If you will recall, in Report the First, Zuska looked deep inside her own brain and found a squirming pile of sexist maggots gnawing away at her will to transform the world.  Report the second is just as unlovely!  So grab your popcorn and let's get started!

Many of you Zuskateers know that some years back I had a stroke caused by a migraine, and that the stroke made my migraines much, much worse - so severe and frequent that I had to quit working.  You may not also know that I lost nearly all my vision at the time of the stroke.  It gradually returned over a period of several months, but I did not get it all back.  I was left with a blind spot in the upper right quadrant of my visual field. It's not a black spot in my vision.  If I really pay attention, I can see that the area of the blind spot seems to have been rubbed or erased out.  But most of the time I don't even see the blind spot.  It's as if my brain takes everything it sees around the hole that is the blind spot, knits it together to patch up the whole, and tells the rest of me, "Okay, no problem here.  What you are seeing is all there is to see."  Oliver Sacks has written about this phenomenon in an essay titled "Scotoma: Forgetting and Neglect in Science".  (It's in a hard to find book called Hidden Histories of Science that is worth seeking out.)

My blind spot is a case of my brain not letting me know what I don't know, and I have to actively work around this to get the information I need, properly interpret the world, and keep myself safe.  Signs are sometimes hard for me to read because I don't get all the information at once, my brain can't make sense of it, and is too stupid to imagine that there might be something I'm missing.  Same thing when I'm reading the paper - I get to the end of a column and think "that story ended oddly".  Then I move my head and see there's an upper right part of the page - oh look! more story!  Finding things on the computer screen can be a nightmare.  I work hard to pay attention because I know I'm missing stuff, but it is exhausting, and sometimes I just quit.  I watch tv knowing I'm seeing about 3/4 of the picture but so what.  It'll do.

I tell you all this because my scotoma is the perfect metaphor for Clang!2.

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Autonomy is a Luxury Part 2

Aug 09 2011 Published by under (if) Elder (why) Care, Making Disability Visible

Age and disability can rob us of our autonomy, as I talked about in my last post.  But you can also lose a piece of your autonomy when you enter into the relationship of being a primary caregiver for an elderly person.  The days when you organized your schedule around your own needs and interests are gone.  Now your schedule fills up with their doctor appointments, the places they need or want to visit, and the things you need to do for them: write a report of the doctor visit for other members of the immediate family; make sure they understand the doctor's instructions; print out a new pill schedule; pick up prescriptions at the pharmacy; balance the checkbook; write out the bills; check the investment accounts online; sort out the mix-up with billing from the doctor's office and insurance company; fight for reimbursement for an out-of-pocket cost; pick up a birthday card for them to send to a relative; transfer the old black and white photos from a no-longer-used wallet to picture frames they can look at; transfer the old slide collection to a digital picture frame, and show them how to use it; take them to lunch, take them to dinner, take them to church, take them to see other relatives; call the after-hours emergency number of the PCP for a worrisome new symptom; arrange for delivery of the new medication; make sure complete orders are faxed to the staff at the assisted living home; follow up with the staff to make sure the orders are carried out.

You will schedule your own doctor appointments and leisure pursuits around these responsibilities; you will schedule and reschedule and reschedule again your dentist appointment because there's always some new crisis that pops up just at the time you are supposed to get your teeth cleaned, and getting your teeth cleaned is never as important as congestive heart failure or dehydration or even the fact that if you just extended your visit four extra days, you could take her to that thing she's so interested in.

Through all this, you will put thousands of miles on your car, and you will spend thousands of dollars.  (Miles on car: 1392. Days away from spouse: 13. Gas, meals, bananas, lottery tickets: $917.44.  Hearing mom say "This is so nice! It feels like you're here!": Priceless.) You may end up quitting or losing your job, because you can't keep up or have missed too many days at work for elder care. Or your own disability may flare up or worsen. You may find that your relatives are grateful for all that you do, that they are unable or unwilling to do, or you may find that they resent and loathe you for all that you do that they are unable or unwilling to do.

I don't think, thought, that I can describe the cost of elder care much better than this video The Cost of Caregiving  from OneAway.org, which I found via a posting on Facebook from my good friend Alayna - thanks Alayna! It is a beautiful video, and as real as it gets.

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Autonomy Is A Luxury

A good day:  I arise at a time I chose.  Maybe I lie in bed for awhile listening to NPR, or maybe I get right up.  It was a cool night, so the window is open, and a fresh breeze blows through the room.  I go to the bathroom, the usual morning ablutions with toothbrush etc., and then I take a nice shower, wash my hair.  The soap is scented cucumber-melon - I got it at the farmer's market last week.  Out of the shower, I towel myself off and dry my hair.  Then I run down the stairs and out the front porch to scoop up the morning paper.  Back inside, make a pot of coffee - it smells so nice brewing.  What to have for breakfast today - do I want to spend the time it takes to make a fried egg or a small frittata, or just have some yogurt with nuts and berries?  Or maybe some oatmeal? I pour the coffee in my favorite mug, carry it with the paper and my breakfast to the dining room table.  The morning sun comes through the bay window, and the rhododendron bush moves a little in the breeze.  I like this table, an old oak beauty I found in an antique store and bought for far less than it was worth.  It reminds me of my mother's table, though no table can ever hold a candle to that one. I peruse the paper and have a second cup of coffee.  One of the cats is at my side, purring, begging for a spot on my lap, and I make room.  I start to think about what I might like to cook for dinner in the evening.

I'm aware that the autonomy I enjoy is a luxury that results from my living in the U.S., from not being poor, and from having had no trouble getting a "good" mortgage to purchase a nice house in a "good" neighborhood (e.g., intersection of race and class privilege).  But the type of luxurious autonomy I am thinking of today stems from another source, and that is the privilege of age and (relative) good health.

I try not to take mornings like this for granted, but of course I can't help it.  It's difficult to be constantly aware of how precious it is, to be able to walk into your own kitchen and pour yourself a cup of your favorite kind of coffee, in your favorite mug, whenever you want. Usually I try not to think about the time that may come, if I live long enough, when the cup of coffee will be poured for me, a weak brew in a plastic mug, and set down next to the breakfast I neither chose nor prepared, at a table without cats but with other people.  The breakfast will not have been preceded by a shower, but by a sponge bath from a pan of water in my room, brought to me after I was awakened by someone at the usual early hour.  (I will be efficiently showered in the evening while seated in a chair, twice a week.) I will walk slowly from that room to the communal dining room, with the aid of a walker, or perhaps be wheeled there in a chair if it is not a good day. The newspaper will have to wait for the mail delivery later on, and for someone to bring it to me, unless they forget and give it to another person by mistake. The window will not be open, because climate control is important.  If it is a nice day, and if someone has time, maybe they will take me outside to feel the breeze for an hour or so.

I will no longer be on my schedule, but on theirs.  I will be dependent upon their help, and I will have to ask for or be given nearly all the things I used to do for myself.  And all this will be only if I am fortunate enough to have the resources to pay for such assistance.

It is possible I will not live into old age.  Or, I will live into a robust old age and not require the services of assisted living or nursing homes.  But I cannot escape feeling much like Chuck Ross, whose blog Life With Father I just discovered via The New Old Age blog, when he says:

Maybe it’s a middle-age crisis, but, at almost 52, the 38-year age difference between Dad and me just doesn’t seem all that substantial anymore. And I find the possibility that he could just be me, aged Hollywood-style, simply terrifying. It makes me want to run, get away to that place of simple, oblivious living that is such a luxury to those who aren’t looking mortality in the face every day.

If I had kids, I might be wondering - will they come to see me?  Will they call?  Will they write?  How often?  If I must ask them to do something for me, if I need something - will they attend to my needs and wishes?  Or will they put me off, because their own lives are so busy, so much more interesting, so much less frightening?  What if I can't express myself to them as well as I used to - will they know how to listen to me?  Will they understand how my loss of autonomy makes me need them so much, but because I am Mommy, I am Daddy, it's so hard to ask, I don't want to be a burden?  Will my asking make me weak in their eyes, and will my need make them angry, resentful? Will they know how to help me, and help me hold on to as much of my autonomy as I can?

But I don't have kids.  So I  just wonder: what happens if my mother is just me, aged Hollywood-style? Because I'm pretty sure there won't be enough money.

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Cuisine, With Feminism: I'll Have The Large Plate, Please

A Kitchen of One's Own is a brand new blog, but I am already madly in love with it.  Blogger Ginny W is bringing the kick-ass. We thought STEM fields were tough places for women to make a living - and they are - but this post makes, say, your average physics department or engineering construction site look like a care bears tea party.

Women are also expected to take part in active misogyny: to refer to men and other women, and even themselves, as bitches; to deal yo mama insults; to deplore weakness, weeping, and other “girl” faults; to make and laugh at rag jokes, rape jokes, and a host of other jokes relying on the revilement of women. Not just tolerate it from the men, but actively take part in it.

The post on Disability and Restaurant Life is also highly recommended.  It gives me a new perspective on this Philadelphia Inquirer story from last July about Jennifer Carroll, pastry chef at 10 Arts Bistro & Lounge.  Hell, the whole damn blog, new as it is, is a real eye-opener for me in thinking about any of Philly's women chefs (and how precious few there are, given the restaurant renaissance the city has seen over the past few decades).

Zuska loves good food and good restaurants, and, of course, is a feminazi.  This new blog is a delight to her hairy-legged heart.

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Vacation, With Elder Care

I just added another blog to the blogroll - The New Old Age hosted at the New York Times.  (Many thanks to my friend PalMD who directed me to this blog some time ago.) A recent post offers advice on traveling with elderly parents.  That reminded me of the last real vacation I was able to take with my mother, in September of 2007, in which the beach wheelchair played such a significant role.  Beach wheelchairs are incredible.  Z-Mom loved the freedom hers gave her, and I think in many ways it did not feel stigmatizing to her the way a regular land wheelchair often does.  It felt sort of funky and crazy, the way everything designed for the beach does.   The foot rest was not the best, but we built our own at the beach.

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Directing Your Attention to the Temple Disability Studies Blog

You all had a lot to say about my recent post on contemplating ability and disability at the vet, and I thank you for everything you shared. As usual, I learned a great deal from my wise commenters.

I wanted to draw your attention to a recent addition to the blogroll in light of the interest in that post - the Disability Studies, Temple U. blog.   The blog itself has an extensive blogroll that is a great resource.

A recent post on the Disability Studies blog announces  a call for proposals for a new book about the younger generation of people with disabilities - those born since the Americans With Disabilities Act was passed (signed into law by Congress on July 26, 1990).

Reading that post, I was struck this afternoon with how very little I know about disability studies, despite living with a disability, and this reminded me of my graduate school self - almost completely lacking in any knowledge or understanding of women's studies/feminism, yet daily negotiating a male-dominated educational environment that was often quite hostile to my presence.  It took me quite some time to overcome my ignorance and realize I needed to actually formally study the condition and meaning of being a woman in this world.

It is some seven years since I have given up living the ignorantly blissful life of 100% health and taken on this invisible disability as my companion.  (Though if you consider migraine per se to be a disabling medical condition, then I've been living with it most of my life, and it's just that it got a helluva lot worse seven years ago.)  During that time I have done next to nothing to educate myself formally in the area of disability studies.  Partly, in the beginning, I was too damn ill to do anything much.  Partly, I think, there was classification anxiety - do I truly count as disabled?  (by whose standards?)  Do I have a right to speak "as if" I am a person with a disability?  Well, of course, one need not be living with a disability in order to learn and speak about disability issues, right? But I think I fear reading the disability studies literature both because I am afraid I will find out I do not belong there - and because I am afraid I will find out I do.

The call for proposals on the Disability Studies blog post included these questions in the list posed as food for thought:

How do people with less visible disabilities choose whether or not to disclose?
How has the nature of “passing” changed or not changed?

I have chosen, since the early days of this blog, to talk about my migraines, and have talked more about my situation as time has gone on.  (I've also talked about dealing with elder care as a category of invisible disability.)  The fact remains that when I am not having a migraine, anyone looking at me would have no clue about my situation, and even people who suffer from migraines might not understand the extent to which my situation is different from theirs. I worried about these disclosures - I didn't want people to pity me, and I didn't want people to send me their favorite migraine cure, and I didn't want potential future employers (if ever I were able to work again) to read posts like this and use them as reasons to scratch me off a list of contenders.  In the end I am glad I have written what I've written, and have been amazed and humbled, time and again, by the willingness of readers to share advice, stories, comfort, kvetching, sympathy, and yes, migraine cures.

But I guess when I think about that second question, I think about "passing" in a sense that relates back to my grad school days again.  Back before I embarked upon any formal engagement with women's studies, another woman in my grad program came to me and suggested that the two of us study together.  She said we were women in a man's world and that we needed to stick together in order to survive.  I looked at her like she had bubonic plague and was offering to share it with me.  I am passing as a dude, lady, and I do not need your weak offers of "solidarity"!  Begone!

I can tell you there is some of that same defensiveness within me now.  Despite all the issues I have and the chronic pain and the bla bla I've done about living with an invisible disability, there is part of me that feels like I am passing nicely as an abled person!  It is scary to more consciously align myself with the disability studies community, because of the dual fears I described above - the fear I will not be welcomed/fit in, and the fear I will.  But as I have said more than once on this blog, if we are fortunate and live long enough, sooner or later all of us will find ourselves living with some sort of disability.  So I think there is really no way to go but forward.

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Contemplating Ability and Disability at the Vet

Yesterday I took one of my cats to the vet.  It was supposed to be both of them, but Fraidy Cat wised up to my machinations five minutes before departure time.  He normally spends 23.5 hours of the day sleeping on top of the bed, but he roused himself at my approach and dived under the bed, which required him squashing himself flat as a bug to make it under the footboard, and parked himself dead center, unreachable.  So I left with one cat and made a second appointment for another day.  Hopefully he will be in more of a stupor on that day.

At the vet’s office, the person who scheduled me for the second visit asked solicitously what time of day and day of week I preferred.  I told the person that I was flexible since I was not working, and that the first available appointment would be fine.  The staff person laughed and said “don’t rub it in about all your free time!”  Well, I couldn’t help myself.  I said, “I’m sorry, I didn’t mean to be rude, but I’m not working because I have health issues.”

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Migraines and Cousin J's Peppers

The launch of this new blogging adventure sadly coincided, for me, with the loss of a beloved uncle.  I traveled back to the hometown area for the funeral and will be here a bit longer to spend some time with mom and Aunt Betty.

I am at the very end of a botox cycle and having near constant daily headache that frequently transforms to migraine with the slightest stress.  Yesterday was a long bittersweet day, with morning's grief of church and cemetery service tempered by sharing of food, memories, and some laughter the rest of the day at church hall and a family home, with all the gathered relatives.

Eventually the relatives began to take their leave, one by one, and only a small group was left.  We gathered around Aunt Betty's kitchen table.  And my cousin noticed the way I was rubbing my forehead, an odd look about my eyes, and a slowing of my voice.  "You're getting a migraine," she said. "Do you want to try a pepper?'

Cousin J, up the street, has a garden with what I have jokingly called magic dirt for some time because of the luscious produce it bountifully produces in such a small area.  He has been growing jalapeno peppers and has found some relief for his own headaches by biting right into them when he feels one coming on.  We had one of his peppers in the house and my relative cleaned and sliced it for me, saving the pith and seeds for extra oopmh if the pepper itself should prove insufficient.  I ate one slice - it was a delicious pepper.  And dang!  I felt a little better. I kept eating.  Chewed a little of the more fiery pith.  By the time I had consumed a whole pepper, the migraine which had indeed been descending had receded, and did not return that evening.

Zuskateers who also suffer from migraine, I ask you:  anyone else ever had a similar response with really hot peppers? It quite surprised me - I was not expecting any noticeable response.  If you try this, remember to wash your hands after handling the pepper - you don't want to rub your tired achy eyes with those jalapeno'd fingers!

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Some Reasons Not To Honk Your Horn At People In Parking Lots

Jul 27 2010 Published by under Making Disability Visible

Go around the other way, idiot

Two weeks ago I was home visiting Z-mom and I took her to one of her favorite restaurants for lunch.  All the handicapped parking spaces were full when we got there so I stopped near the door, got out the transport chair, helped her into it, took her into the restaurant, scurried back out to park the car, and then rejoined her in the restaurant.  After our meal I had to do this in reverse.  Brought her near the restaurant front doors, then went to get the car. I drove up near the entrance, hung the handicapped parking placard from the rearview mirror, got out of the car, went around to the passenger side, opened the door, and was about to go into the restaurant to get her when some d00dche pulled up in BigMobile he couldn't get through between my car and the adjoining row of parked cars.  If he had backed up ten feet, he could have gone around the other side of the row of parked cars, but instead he chose to honk his horn several times and yell out the side of his car window, "Move your car, lady!"  It was about 150 degrees in the shade that day and 99.9% humidity and I was worn to a nub.  We'd had a horrible time at mom's morning doctor appointment, and had to hurry through lunch because we had an afternoon doctor appointment as well.  I yelled back, "I'm picking up someone in a wheelchair, dude.  Move your own damn car."  And went in to get mom.  By the time I came back out with her, he was parked and walking up to the restaurant.  In dulcet tones, he apologized and said how sorry he was, he hadn't known, he thought I was parking there to get takeout, bla bla bla.  I looked at him and said, "I don't park in the middle of the street for fun."

But you know? Even if I had been parked there to get takeout (with my handicap parking placard dangling from my rearview mirror) - what's the need to honk and yell?  Save your blood pressure, back up and go the other way.  Or wait 6.3 microseconds to see if you can figure out wtf is going on.  Douchenozzle.

Don't drive up my ass

Yesterday I was out running errands.  I'd woken up with a headache, but I do most days now that I am at the end of a botox cycle, so I tried to shrug it off - had to get some things done.  Bad call.  Out running around doing stuff, near the end of the errand list, I suddenly got...this feeling. Oh no.  I know that feeling. Just...wrong. As if my blood pressure and blood sugar both simultaneously plummeted.  I felt breathless and lightheaded and intermittently saw spots.  I started to get an odd type of tunnel vision, where I could still see everything, but not really make sense out of things on the periphery.  I felt cognitively confused - all information processing took much, much longer than normal. The bad-enough headache was ready to transform itself into a full-blown, raging migraine.

And I was driving.

Fortunately I was very near the entrance of a large parking area, and I knew that off to one side there was a place I could park and be in the shade.  I pulled carefully off the road into the parking area entrance road, which led uphill, and then, I knew, had parking lots to the left and right.  But I couldn't see well and wasn't exactly sure where I would have to make the turn, and then at the last minute I couldn't remember if I should go left or right, and I was disoriented, so I stopped, briefly, trying desperately to see and figure what I should do.

And then some cranky ass woman in the car behind me honked, and honked, and honked again. This, as you might imagine, was extremely helpful to me in clarifying my cognitive confusion.  I wanted to get out of my car and go back to hers and yell at her, but I was afraid I'd pass out.  I honked back in frustration, and made a wild guess that left was the direction I wanted, which turned out to be correct, and found some shade.

I got something to drink at nearby store and was able to take something that made me feel better enough to drive the rest of the way home.  Nobody else  honked at me.  And then I was sick as hell with the worst migraine in weeks for the rest of day and evening.

Moral of these stories

Maybe people are doing stupid things in parking lots for stupid reasons.  Or maybe not.  Maybe there's a hidden disability involved.  In any case, it's not clear to me that the honking does anything more than vent the honker's spleen.  I don't know if that lowers or raises the honker's blood pressure.

Honking to warn people of impending danger is good.  Honking to teach people a lesson about how you believe they ought to behave is silly - do you really think they "learn"? - and adds to noise pollution.  (I'm quite sure that lady in the car behind me learned nothing from my honking back at her.) Plus, it aggravates my goddamn migraine.  So don't do it if you can help it.  Thanks.

This post could also be related to Juniorprof's twitter campaign #painresearchmatters.

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Juniorprof's #painresearchmatters Campaign

Simple Pleasures and Allodynia

If you have long hair, maybe sometimes you like to pull it back and put it in a ponytail tie or a scrunchie, especially when it's hot outside.  Or if your vision is less than 20/20, maybe you like to wear eyeglasses so that you can see well when you are driving or walking or just toodling around your home.

When I get near the end of my three-month botox treatment cycle for my chronic migraines, those things start to feel like impossible luxuries for me.  The botox treatments - the only thing that seems to work to abate the frequency and severity of my migraines - begin to wear off at about 2.5 months, and then the migraines transform into more or less constant daily headache that is sometimes worse, sometimes better, but nearly always there.  My scalp hurts.  The back of my head hurts.  My eyebrows and the bony part of my skull just above and near them hurts so intensely it feels like I have been punched in the face there.  I have found that spring-loaded clips are less irritating for bundling up my hair but even these can be too much - sometimes I just can't stand to have anything at all tugging on my hair.  (This is one of the reasons I'm thinking of getting it all cut off short, short, short.  Mr. Z will grieve, alas.)  I use my eyeglasses for distance only so when I'm in the house I often just leave them off altogether, so that they can't irritate me by resting on my ears and bridge of my nose.  (I can't wear contacts because of near year-round problems with allergies.)

These problems are an example of allodynia (that link will take you to a nice post on Juniorprof's blog explaining allodynia and its mechanisms).

I once had a migraine so severe that I could not lay my head down on a pillow, because contact with the pillow hurt my face and scalp.  All I could do was sit in a chair and cry.  This went on for three days, until some friends discovered me and took me off to an emergency room for some pain relief, an option I had not known was available.

Treating Pain and Side Effects

I am deeply personally acquainted with pain, both chronic and acute, and the list of prescription and OTC meds I have taken over the years in an effort to prevent and control migraines, and treat their pain when they manifest their ugly selves in my life, is stunning even to me:  Acetaminophen, acupressure, acupuncture, ambien, amitriptyline, aspirin, chiropracty, coffee with lemon juice, coenzyme Q10, darvocet, demerol, depakote, dilaudid, excedrin, fentanyl, fiorinal,  inderal LA, lamictal, magnesium, massage, percocet, petadolex, reglan, seroquel, skelaxin, timolol, thorazine, tizanidine, topamax, toradal, tramadol, verapamil, vivactil, vicodin, vioxx, xanax, zonergran.  I am pretty sure this is only a partial list as I did not go through my file with the information on all the meds I've ever taken since my stroke odyssey began in 2003 for this post. (I can't take the various triptan drugs because of the stroke.)

Nearly all the preventives caused me intolerable side effects - one memorable combination landed me in the hospital with a heart rate and BP so dangerously low I nearly died, and another had the distinctly unacceptable effect of making me incontinent.  And not in the "I need to pee more frequently" way.  The meds that effectively treat the pain all have the same lousy side effect, too.  The pain stops, but only by virtue of putting me to sleep for anywhere from 2 to 24 hours, and leaving me with a pain reliever hangover.  Use them too often, and you are in danger of having rebound headaches, and/or developing tolerance.  Before I started seeing my present neurologist, I could tolerate a narcotic dose that would tranquillize a horse.  He got me off the narcotics, which weren't working so well anymore, and moved me over to Botox only and non-narcotic rescue meds. These meds are extremely sedating, which I hate, but they are less likely to cause rebound, and also less likely to have tolerance and addiction issues. I'm grateful to my neurologist for giving me pain management options that don't include the opportunity to become a drug addict.

When my migraines were at their very worst, the only pain reliever I had available to me that worked well was fentanyl. Unfortunately, one night I developed hallucinations from it.  Some people may think hallucinations are a kinda trippy, fun sorta thing to experience but this was not.  It was terrifying and disorienting and I lost 36 hours of my life - and had to be hospitalized, again.

This is why I am grateful beyond what words can express for botox, because it is the ONLY thing that has ever provided any real sort of relief for me.  It does not cure the migraines, just sort of keeps them in check but that is still major progress.

It is also why I am grateful beyond what words can express for those who do pain research.  I have relatives who also suffer from migraine, and one of them has participated in a clinical trial to help better understand how botox treatment might help potentiate the action of triptan drugs.  I would dearly love to see botox treatments approved by the FDA for use in migraine treatment, because I really do think existing evidence shows it works - maybe not for everyone, but for enough people to make it worth having it as a choice when other options have failed.

Juniorprof has started a twitter campaign on why pain research matters, and has this excellent post which I urge you to read.

pain research matters to me because chronic pain is poorly treated, poorly understood and the people that suffer from chronic pain deserve a chance at getting that part of their life that pain sucks out of you back. I hope you’ll join me with tweets #painresearchmatters

Researchers like Juniorprof are among my heroes.  Read the post, if you twitter, join the twitter campaign.  Comment here and on Juniorprof's blog. If you are currently painfree - count your blessings and enjoy the day!

Hat tip to Drugmonkey for making me aware of Juniorprof's post and campaign.

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Things You Just Shouldn't Say Even If You Mean Well

I'm speaking from experience, people, having had most of these lobbed at me one time or another. Please feel free to add to the list in the comments section.
1. "When is the baby due?"
I'm not pregnant, you douchebag. I'm fat. If I were pregnant, I'd probably be prancing around telling everyone and her goddamn sister about it because that's what we do in our society. Or, if I were pregnant, and afraid I might lose the baby, maybe I wouldn't want to talk about it. In any case, if I were pregnant, and you haven't heard about it yet, wait for me to talk to you about it. Otherwise, STFU. Now move out of my way and let me at the food in the buffet line, because I am so going to need more chocolate after your insensitive remarks. Oh yeah, DON'T follow up with, "Oh...you looked pregnant..."
2. "Wow! You've lost so much weight! You look GREAT!"
Yes, you douchebag. I've lost weight because I've been SERIOUSLY ILL for the last year and unable to eat almost anything. But thanks. I appreciate your comments and sure, I'd be happy to share my miracle migraine diet with you. It goes like this: First, have a stroke. Next, start having debilitating migraines every two to three days. Lose your job. Become unable to eat anything containing peanuts, yoghurt, bananas, chocolate, and the least trace of onion or onion powder (including ketchup). Try every preventative medicine in the pharmacy, and experience a fascinating and alarming array of side effects. Keep this up for one to three years. You, too, will lose thirty pounds like magic! If that doesn't work, try cancer.
3. "When are you/you two going to get pregnant?"
When Mr. Z and I lived in Kansas, we used to get harassed ALL THE TIME by the neighbors on our street about when were we gonna reproduce. I mean, it was vigilant social nagging to have babies. We were one of only two couples on the street without kids, and the only couple who had not expressed a desire to have kids. Finally, one day, when there were a bunch of us in a circle out on our front lawn hanging out, and the "you ought to have kids" crap started up again, I just said, "Did you ever think, when you tell people that they ought to have kids, that maybe some people don't have kids because they can't have kids?" They STFU and never bothered me again. Mr. Z and I never actively wanted to have kids, though if we had gotten pregnant we would not have been upset about it. I just can't imagine how I would have felt with that incessant nagging if we had actually been trying and not able to conceive. I hope to hell those idiots will think twice before they start in on other women who have "failed" to pop out babies on a socially acceptable timetable but who knows how long the lesson lasted. DON'T BE THOSE PEOPLE!
4. "You are SO LUCKY to get to stay home all the time!"
Thanks, moron. I am sure you work your ass off at your job and would love to have a break. I feel your pain. So take a goddamned vacation already. But please - do not distance yourself from your fear of what happened to me by telling yourself that it was really a lucky break that I had a stroke and lost my job and "get" to stay home all the time. Seriously.
5. "Everything happens for a reason."
In the same vein, please do not tell me that it was God's mysterious will that I have a stroke and lose my job so that I would be available to provide care for my mother just at the time when she needs me. I am sure that is comforting to you and your world view but frankly, it makes me want to blow chunks on your shoes. Maybe God could have sent me a winning lottery ticket instead, so that I could just be independently wealthy and not need to work - and then I could take you out to dinner, too! I think that would have been a lot nicer and more thoughtful of God than sending me a stroke, but what do I know.
6. "So, was it the high blood pressure, or the high cholesterol?"
I can't tell you how many times people I barely know have probed me for the moral failing that caused my stroke - even after I have told them that it was caused by a migraine. When I tell these nosy douchehounds that I had neither, they reward me with looks of disbelief. Surely I must have been a bad person in some way, to have earned such misfortune (despite it having been God's will, see #5 above).
People - really - you have got to stop this kind of talk. Bad crap happens for no good reason. Peoples' bodies are their own business. Repress the urge to comment on their appearance and what they are or are not doing with them. Stick to things like "hi, how are you doing?" and then actually listen to the answer. Please. For the sake of my sanity.
Thank you. That is all.

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Fitness for the Aging Body Charged with Elder Care

My fitness program the last 3-4 months - or reasonable facsimile thereof...
Monday: go to gym, half hour on elliptical, half hour doing weights routine picked up at last stint at physical therapy for excruciating neck pain developed over several years due to chronic migraines.
Tuesday: spend day writing bills for mom, wrangling with health insurance company and/or health care providers over some mix-up regarding payment for service provided six months to a year ago.
Tuesday evening: receive phone call about new urgent health care crisis for mom. Spend rest of evening phone conferencing and texting with siblings.
Wednesday: continue phoning, texting with siblings. Also with assisted living home, doctors. Crisis mostly averted.
Thursday: Knee is hurting. Skip gym.
Friday: Knee hurting worse. Skip gym. Resolve to call doctor.
Sat - Sun: Husband not working! Try to catch up on house maintenance, laundry, see a movie, cook a meal together, grocery shop, visit his parents, go to a museum, etc.
Monday: Must drive to western PA - mom has doctor appointments all week. Six hours in car. Visit with her at assisted living home. On to family home, unload car, collapse.
Tuesday: Up early. No food in house. Pick up mom, remember to request copy of current med list, get meds she will need for day out, help her into car, wrangle transport chair into car trunk, off to doctor's office. At office, wrangle mom in chair into building. Repeat whole ordeal getting back into car and going to restaurant for lunch or dinner. Back to AL home. Visit with mom till mid-evening. Back to family home. Collapse.
Wednesday: Repeat Tuesday.
Thursday: Repeat Tuesday.
Friday: Visit mom briefly before driving home six hours. Collapse.
Sat - Sun: Husband not working! Try to catch up on house maintenance, laundry, see a movie, cook a meal together, grocery shop, visit his parents, go to a museum, etc.
Monday: Knee really fucking hurts. Regular doctor visit coming up.
One week later: Doctor visit. Find out you need PT on knee, which may have torn meniscus. No gym for you.
One month later: After managing another series of minor health crises for mom, plus the usual paperwork issues, finally schedule PT for knee. Spend next two months in PT.
Two months later: Christmas holidays are here. Everywhere you turn, people are foisting baked goods and chocolate on you.
January 2, 2010: Some young whippersnapper is going to write about being fit on her blag!

Im pissed because getting fit really isnt all that hard. If I can do it, anyone can do it. The 'hard' part was sifting through all the bullshit to find out what actually works.

HAHAHAHAHAHAHAHAHAHA!

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Elder Care vs. Child Care: Which Would You Rather Talk About?

The whole month of October has gone by, and none of the things I promised myself I would finally get around to writing about this month have appeared on my blog. They haven't even made it out of my cranium into rough draft form on my computer. I didn't even manage to get a post up exhorting you all to open your wallets for the good cause of DonorsChoose 2009 Social Media Challenge (though there's still one day left should you be so inspired!) I managed somehow to get my giving page set up (and a few of you stumbled across it and donated, with absolutely no help from me - bless your hearts!)
If I could use one word to describe my blogging over the last year or so, it would be "inconsistent". Inconsistent in frequency, topic, quality, and sense of direction or purpose. I start out with a good idea, like blogging my way through The Gender Knot (which, by the way, I still intend to pick back up and work on again) and then am not able to continue.
Part of this bloggus interruptus is due, of course, to the migraines, but increasingly it is due to the sapping of my resources - time, emotional and mental energy - that comes from attending so closely on a daily basis to my mother's financial and health care issues. I've thought for a long time of trying to describe what this is like, but of course doing so takes time and concentration and focus that I don't normally have, because my time and emotional/mental/physical energy is drained through daily struggles with seemingly endless, always tedious, mind-numbingly little, stupid details. Any one of the things I have to do is small and takes not much time. But they all add up over time, and each little struggle carries with it its own special humiliations and defeats. Here I'm going to try and describe a little of what goes on in the mind of someone charged with managing the care of an elderly person.

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