Archive for the ‘Making Disability Visible’ Category

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

July 27, 2010 14 comments

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.

Juniorprof’s #painresearchmatters Campaign

July 25, 2010 10 comments

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.

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

January 12, 2010 52 comments

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.

Fitness for the Aging Body Charged with Elder Care

January 9, 2010 13 comments

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.


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

October 30, 2009 16 comments

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.

Read more…

Another Good Reason To Brush Your Hair

July 9, 2009 2 comments

Because you do not want them to think you’re crazy. Also, do NOT put on that hospital nightgown, no matter what they say.
Mind Hacks gives us another perspective on patriarchal norms for female appearance. Don’t run out to the convenience store without brushing your hair, make sure to always dress well, or else you’ll be taken for a CRAZY LADY! And you wouldn’t want that to happen.
Oh, never mind. We already know all teh wimminz is crazy anyway.
Mind Hacks post found via this David Dobbs post.

Scrubbing the Kitchen Floor

February 16, 2009 5 comments

Whenever I go back home to see my mom, I usually spend some time visiting with her cousin D., who lives in the house across the street from my mother’s house. D. has spent a good many years taking care of his elderly mother, my great-aunt. I have known D. all my life. As a child growing up, he was one of my elders. As a young adult, coming back home now and then for visits, I often didn’t know what to say to him when our paths would cross, thinking I didn’t have much in common with him. Now we are both intimately involved with the care of our elderly mothers and this brings us a companionship I never would have imagined.

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