Friday, February 29, 2008

The Good, the Bad, the Good

I was surprised and delighted today to peek at the Temple University disability page today and find someone else was writing about guerrilla bathroom construction at the Disability Blog Carnival hosted by Shiloh--and found out, wait!--that was me! I didn't feel I was creative enough to write to the prompt this month, though I couldn't wait to see what emerged. Turns out one of my posts fit the theme better than I thought. Thanks so much, Shiloh, for including me.

Do you remember in 1984 how Big Brother managed to tap into the protagonist's worst fears and then make them manifest? Well, sometimes not knowing might be healthier. I looked up more information about the epidural on the surgeon's webpage, and more information about the surgery, too. It does, in fact, require one of those neck collars. I already hate turtlenecks, I don't often wear necklaces because they get too heavy, and though I don't like my joints to get cold, I overheat. I'm starting to sweat already thinking about this. My hair is falling out from stress or pain again. I'm going to look like Michelle Pfeiffer in that Stardust movie if this doesn't stop. And if people didn't already think I'm an attention whore, they will if I wear that. I remember one woman saying, "Why does she always have to be so dramatic?" when I needed to sit in a chair. Of course she might not have realized that I was terribly embarrassed to ask in the first place.

I received a phone call today about a potential opportunity that makes me very happy--the possibility makes me very happy, whether or not it coalesces, as very much hoped. And I got out for a while and spent some time doing something meaningful. Back to lying down again. Doesn't take much to make me happy.

Lucidity

My first thought this morning was, "Maybe the doctor saying 'I wouldn't wait that long' is not a good sign." But we do have to wait since we have to figure out the prednisone allergy now since that's what they typically inject. Calls to the allergist, possible load testing (they see how much you can take before you react), don't know if all that can be done very fast. The irony of being right about wacky fears. Arm hurts, leg hurts, neck hurts. All of that's okay, it just makes me panicky that things will get worse in the interim, and since my fears sometimes pan out, I better stop thinking about it. New superstition: if it's not a phobia, it won't happen to me. I want out all day, but I think I should try to let things calm down some.

In other news, my husband said he missed more layoffs yesterday, thank goodness, for multiple reasons. I can't imagine doing this without insurance, and I'm not sure I could switch to my employer's in time.

The kiddo gets to race his Pinewood Derby car at Scouts tonight. His car is superfast and a sleek yellow. He's worked on it off and on for six weeks or so, and he won district last year. My husband also built his own car--some of the dads are going to race their own against one another.

Thursday, February 28, 2008

Redux

Pain. Lamaze breathing on the way home helped. Longer I'm out, more it hurts. I do okay for a while, and then reach a certain threshold, and bam.

C5-C6 biiiiiggg problems, as the doctor said. And new surprises at C6-C7, which explains other symptoms. Spinal epidural in a week and a half to try to bring down swelling of tissues against spinal cord; if that doesn't work, surgery. From the front, just like I guessed, taking out the whole disc and replacing it. (See hubby, I don't worry too much.) But there's a higher success rate with this than with low back surgeries. I really start freaking out when I think about it, so I'll try not to think about it. I don't want steroids, not good for my bones. But since I'd like to keep arm, finger, hand, leg function, too, and spend more time out of the bathroom, I'll give in.

It hasn't hurt like this in a long time. Just had radiculopathy, neurological problems before. Keep asking myself if it's psychological. It darn well feels concrete, hurts hurts hurts.

At least my friends aren't flaking out on me right now and cancelling out; now I'm the one who's doing it.

Got grouchy with strangers today because people played "let's outrace the scooter to the elevator," squeezing between me and the person in front of me, pretending not to see me until it turned out there was enough space, then not moving when I got on the elevator so I could get all the way on, then piling out and not holding the door. I finally said, "Could you move," to someone. I'm not typically grouchy, but the cutting in and jumping on the elevator first bothers me.

Wednesday, February 27, 2008

Pain

That's all, really, I can think of right now. Brain won't work. Neck hurts--it generally doesn't since I typically know how to avoid aggravating it. Spine hurts at its typical worst. Really wanted wanted wanted to go to something tonight, could not or know I wouldn't be able to function at all tomorrow, and it will be a long (for me) day.

What is nice: coming home to comfort food that my husband had made. Fried chicken, okra, rice. No restaurant can ever do fried chicken the right way. Now my husband's fried chicken is better than my mother's, though Grandma has him beat with the okra since she uses cornmeal.

I don't like being limited like this, in how much I can do per day. Did too much this weekend, worked half as fast I "should" have yesterday. Being limited in physical function I can live with, but not when it interferes with life activities.

Is it just me being oversensitive, or is saying "thanks to so many able-bodied volunteers" insulting? Yes, able-bodied volunteers were needed for a project at the kids' school, but to me, you praise the work, not the part about being able-bodied.

I'm sorry my thoughts are kind of shallow right now. Blogging does help me compartmentalize some, release some of what bothers me about health issues, though not all of it, like pain that's bludgeoning me, can be released, much as I'd willingly let it go. I'd like to be a better writer for the sake of readers and potential readers here (i.e., give people a reason to visit, so that it benefits them in some way), but the blog will have to be what it is already for a while.

Monday, February 25, 2008

Pregnancy causes memory loss

I had forgotten about this:
http://www.cnn.com/2008/HEALTH/conditions/02/05/pregnancy.memory/index.html

Oh, wait...

They don't mention the study about women's brains becoming more complex during early motherhood. I wonder what the social purpose of this research is--maybe we shouldn't work? maybe we're not as smart?

Sunday, February 24, 2008

In the mailbox

Last week:

9 a.m.
Hello Frida,

I can't make our meeting [at 9 am] because the rain is getting worse. It soaked through my bag and my laptop and my papers are all wet. If it lightens up in the next few minutes I will try to make it.

Thanks,
Frosty the Snowman

Thought but unsaid, 9:01 a.m.
Dear Frosty,

Contrary to your perceptions that I have magical powers, I cannot enter the building by space-time travel. Unlike you, who might find a new contraption called an "umbrella" or an amazing garment called a "raincoat" handy, I can't drive a scooter, hold an umbrella, and keep my belongings dry, so they, too are wet. In addition, my clothes got soaked while unloading my scooter, my scooter got soaked while I loaded the lift, and I am now sitting in a puddle, despite the towel I brought. I also risked shorting out the scooter's electrical system in the rain. For you. But yes, certainly, stay warm and dry there in Oz.

Yours,
Jemima Puddle Duck

Friday, February 22, 2008

And now for something completely different

The shopping cart dance, brought to you from Salisbury, England.



Good ballet training will never let you down. Almost but not quite as much fun as my favorite YouTube video, Hands Are Bananas ("buffalo . . . buffalo").

MRI Machine 0, Frida 5

Survived my fifth MRI tonight. For the first time I didn't worry much that:
-I might have had surgery when I was small requiring metal implants or pins and my mother won't admit it;
-the technician might have left a pen or his keys or a big metal chair outside the machine;
-I might have actually swallowed part of that piece of metal in my food a few years ago;
-theoretical aliens might have implanted me with metal while I was sleeping;
-the prismatic glasses they gave me to see out are metallic;
-the headphones for the music they let me listen to contain metal;
-the pain in my stomach means that part of a gum wrapper I ate once stayed with me;
-nail polish might count as makeup and does have metal;
-the metal permanent retainer in my mouth might no longer be stable;
-more of my hair will fall out from stress;
-they should have given me the dye and they'll make me redo this next week;
-they'll give me the dye next week and I'll be allergic to it;
-they won't have epinephrine on hand, or I'll react to the sulfites in it, or my high heart rate/occasional arrhythmia will go out of control;
-one of my medicines has an anti-epinephrine effect;
-I'll react to the latex gloves sitting over there, on the shelf;
-I feel too hot and if the machine's too old and will spontaneously catch fire (actually, I did think about this, inspired by the biggest fire extinguisher I've ever seen, right outside the room, and how roastingly hot I was getting);
-I could have a panic attack, and then they'd make me have a myelogram next week instead;
-this nausea could get worse;
-the inside of my coffin will be this close to my face, and I'll know it;
-if I have surgery it's going to be even less fun than sitting here with my head in a padded vise;
-if I have surgery on my neck, how will I tell the difference between bad neck/head pain from surgery and pain indicating CSF leak?
-if I think I have a CSF headache from myelogram or surgery and it's not, and they patch it, and then I have too much spinal fluid? Then what???
-this would be one of those neck surgeries they have to approach from the front, and would I have to have my head immobilized in some way or in one of those awful contraptions, and worse, how would I wash my hair?
-how long will I have to go to physical therapy, anyway?
-if I have surgery, what kind of pain medicine will they give me, and what if I have a bad reaction to a morphine pump like my sister did, and how will they stop a bad reaction since I'm allergic to prednisone, which they gave her;
-they might accidentally leave me in the machine since it's Friday night, as happened at one imaging center (ok, I worried about this, too).

(No worries that I'm normally this nuts, at least not in this way. These ideas only occur to me while in MRI machine. The radiologist did say something about a metallic artifact on one MRI image a while back, but I guess he was wrong.)

The technicians at this imaging center, which I've been to three times (CT and x-rays in addition), are better than at other centers; they don't leave and I can always see them through the window with the mirrored glasses, they bring heated blankets (though that may have backfired on me since I get hot when stressed), and they are good with helping me position comfortably and patient when I get up slowly (not everyone can recognize it will take me a bit). They also stopped halfway through so I could take a break and go to the restroom (and I didn't even ask). They also let me know periodically how much time was remaining.

My husband says I know too much about medicine (or just enough) and that's what causes me to imagine worst-case scenarios. He says he has more trust since he's doesn't know much about medical issues.

Medical Mystery, A Board Game, First Round

I envision this game working like Trivial Pursuit, except every so often you could lose your pie wedge because of new symptoms. Alternatively, there could be a Cranium version in which you have to act out the illness, spell complicated medical terms, or figure out the name of an illness from jumbled letters.

Unfortunately, the web only allows for 2-dimensional fun, but here goes. Those of you who listen to other people's medical problems will do particularly well.
1. Your friend has numbness and pain in his fingertips and the backs of his legs. What specialist should he see, and what tests should be run?

2. Name three kinds of radioactive contrast dye (no googling).

3. Patient A is a middle-aged female who has lost much of her hair and has fatigue and odd rashes. What is your hypothesis?

4. Your alkaline phosphatase is elevated. What labwork will the doctor order next?

5. Male patient's breasts leak milk. What are the two primary possibilities?

Bonus: Spell diverticulitis backwards without looking at the word or going back to correct your answer. (This is the honor system, people.)

Superbonus: You are awarded a gold star to put on your wedge each time a medical professional asks if you have a nursing degree. You get an extra wedge each time a staff member thinks you're a doctor because you're in the building so much.

Thursday, February 21, 2008

Recent news

Someone I knew died of cancer today. I had not seen her in a year, and I had not heard she had cancer. She had told a few people, said it wasn't that bad, but it's the kind of cancer people don't recover from. End stage metastasis.

What do I remember? Honestly? She talked too much. And she was smart, vivacious, enthusiastic. Bright eyes and a contagious smile. She achieved a lot. She was my age, far too young to die. I met her mother once, and her mother was so proud of her and couldn't help but brag about her daughter's achievements. I would have, too. The last time we talked? I remember discussing Brokeback Mountain with her. She seized life in a ways I never would have dared to.

I didn't know her well, but I knew her well enough to feel really sad about it. She was too young to die. Today, she should be pursuing her dreams, changing the world with her strong sense of feminism. She should be talking too much, engaging with life, there for her child.

I want to rail or rage against the lack of progress we've made against cancer; it's so aggressive in young people. Why not more progress, why not sooner? I hope she had enough support and friends around her in the last few months, and I hope those I know who loved her are doing okay. She didn't deserve this, and the world shouldn't be deprived of her gifts.

Wednesday, February 20, 2008

I really will stop talking about myself...

...and get back to regularly scheduled postings about general disability issues soon.

Spine doctor disagrees with urologist, is concerned that my problems do come from spine, possibly brain. Wanted to do brain MRI at same time as spine MRI repeats, but he's afraid insurance co. will balk and won't pay, so spine MRI first. Then maybe brain MRI, nerve studies on arms (only had legs before). Asked about vision problems--check. Numbness in arms--check. Pressing on disc in neck hurts--check. Possible surgery--check.

I don't want to tell anyone in real life but hubby and maybe a close friend or two about this yet because I don't want to yack about it, get people all concerned, and then have it be nothing and have stressed people unnecessarily. I have lots of medical tests all the time, most show nothing or no change and are done to exclude problems. But I feel stressed. I don't even want to let my other doctors know right now, even though we're in contact by email or phone.

Good news is the spine doctor reminded me that I had a pelvic MRI done last fall and there were no masses there that would cause bladder problems. You forget about all the tests when there are this many, especially since that was for orthopedic problems.

Had to go off Detrol, couldn't pee because of it.

Back to working, couldn't focus.

Tuesday, February 19, 2008

File under "thanks for sharing"

In this week's cartoon from his series "Dear Disabled Friend," (#12, I can't get the picture to post) Andre Jordan jokes,

Dear Disabled Friend,
It took 10 minutes to find the portaloo. 25 minutes to get you inside the portaloo. And 4 flippin' hours to get you out of it!
I am not going to a pop concert with you ever again!

Sound familiar? You know what I'm talking about! You don't dare to sip a drop of water or a soft drink before an outdoor event, public concert, or before traveling, or think of waterfalls, rivers, and running fountains, lest one extra drop of liquid send that already fragile ecosystem down below searching for a bathroom. Dehydration? A major emergency in hot weather, but a risk worth experimenting with when public accessibility is low. No wonder people with disabilities end up with kidney stones and other urological problems. One of my friends would drink nothing the evening before she traveled, and I'm known to limit when I'll be out for a while. Stopping every 30 minutes in the car doesn't always work, especially on the Great Plains or remote areas in the American West without tree cover or rest stops or even a small town closer than 70 miles away, but oops, the sips of water you needed to get lunch down seem to have escaped from your stomach somehow, and like water splashing over the great wheel at a historical replica of a mill, every drop makes its way post haste to the raging bladder, which threatens to overflow its banks. Oh, the planning every move takes.

But, speaking of pop concerts, it aggravates me to no end that at a concert we want to attend a few months for now, my family cannot sit together. Because of limited accessible seating, PWDs can only have one attendant with them. I'd like to enjoy the experience with both children and my husband, and have my husband's assistance as needed with positioning and getting in and out if needed. Integration, not segregation!

Can't there be some removeable seats at the front of sections (at the front in case people stand at some sporting/concert events)? I also can't attend a game with my son's cub scout group because there's no way for them to secure one accessible seat within a larger group of nondisabled people. Why can't planners and architects figure out this kind of issue? In the scheme of things, it seems like small beans. What if a large group of PWDs wants to attend a show? With other nondisabled people?

Sunday, February 17, 2008

And other observations

Don't take a kid under 10 to see Spiderwick Chronicles even if he's read all the books, or he's going to have to see a therapist for the trauma when he's grown. The rest of us enjoyed it and he was okay with staying, but he kept his hands over his eyes for parts, and I caught him eating popcorn with his eyes closed several times. Sensitive little guy. To me that's a good thing in a world inundated with violence. He won't even watch the Harry Potter movies or finish any of the books beyond the second because he says he doesn't like all the fighting in them. And that's fine. Kids grow up too fast. My mother-in-law has accused me of being overprotective because I don't let my children watch most mainstream television or PG-13 films, but my kids have a gentleness to them because of it. I talked to my son about the benefits to his fear and told him it's okay to feel afraid (he always seems relieved when I say things like this). If more boys (and men) were okay with a negative reaction to gratuitious violence, perhaps we'd have less violence.

In other news, I've decided to move into our new apartment, I mean the new minivan full-time. Each seat has a seat-warmer for the back and legs that feels like a perfectly contoured heating pad--it outperforms anything I have at home. My husband purchased the minivan on the last day of the month and got it thousands of dollars under invoice plus loaded with all kinds of options. Now I'm completely spoiled. Butt warmer, satellite radio (for a year, while it lasts) tuned to '50s music, hidden supersecret CD player, backup camera, green ceiling lights in the rearseat. With 12 cupholders and a scooter, I've got everything I need. All I need is a temperate climate.

I used to like cold weather so much! I still do when my joints aren't stiff. This year I've been bundled up with microwaved rice socks, a heating pad (which will cause you to become crispy if you use it too long, I'm just saying), and these great microwaveable buckwheat filled lavender mitts a friend gave me. I want some of those moist-heat gel microwave/freezer pads again since they work better than the heating pad. Can't type or read once mitts go on, but I'm not complaining.

Saturday, February 16, 2008

Guerrilla Grrrl

Images copyright by the Guerrilla Girls.

This post inspired by fantasies of equal access.

Remember the Guerrilla Girls, who took the art world by storm, pointing out sexism in artists' representations of women and how difficult it is for women artists to be recognized? As members of an anonymous group, the women in the collective wear gorilla masks and use pseudonyms to conceal and protect their identities. They even have a Frida Kahlo. Just as the love letter to an art collector above points out that "your collection . . . does not have enough art by women," I'd like to point out instances of disablism and places that do not allow space for people with disabilities. I have a wicked dream of invading bathrooms and offices with screwdrivers, hardware, and quick set asphalt, making inaccessible places barrier free by surreptitiously correcting simpler design flaws with the help of a small group of other people with disabilities. Spray painting more curb bumpers blue and stenciling the universal handicap symbol on the asphalt of parking places at hospitals whose disability parking fills up by 9 a.m. every day, however, is a vision that will have to remain a distant fantasy in the era of surveillance cameras and my inability to break most rules.

Since the Guerrilla Girls ask that their work be reproduced, here's another of their posters, "Do women have to be naked to get into U.S. museums?," this one featuring an artistically posed nude wearing a gorilla mask:


But could we in the disability community be disguised as readily, mobility equipment marking us, or our bodies themselves already marked in some way? Nevertheless, I'd love to see something similar to Guerrilla Girls' activism for disability.

In the bleak midwinter

With a highly contagious stomach virus, a respiratory infection, and the flu decimating the local school, one-third of my daughter's fourth grade class was absent yesterday (ten kids went home during school). In one class, two-thirds of the students were absent. I don't have the statistics for second grade, but there are so many teachers and regular substitutes sick that the school couldn't get a substitute for my son's class yesterday. And this in a school where typically a huge number of kids get perfect attendance for the whole year.

Even during the Valentine's party Thursday, the custodian kept getting summoned for clean-ups, and not for spilled juice.

My son caught the stomach virus last weekend, but no one else in the family has had it. Kids have Respiratory Infection #1 now. I'm really into frequent handwashing right now.

Looks like a cold winter day indoors.

Friday, February 15, 2008

Tag, You're It

(Anyone who is reading is welcome to post what they're reading.)

I've been tagged by Connie at Planet of the Blind (I love Connie's and Stephen's whimsical sense of humor) and am tagging 5 people in turn. I quickly see that I need to expand my very short blogroll, so feel to join in and consider yourself surrogate tagged (or something) if I haven't tagged you.

The instructions:
-look up page 123 in the nearest book
-look for the fifth sentence
-then post the three sentences that follow that fifth sentence on page 123
(Note to hubby: not that one! put that book down!)

My answers:
"That was a statement," he said snidely. "We need to be more aggressive with the Pitocin."
Sarah retorts, a little edgily, "What do you want us to do differently?"
From Catherine Taylor's Giving Birth, recounting an incident with a "bullying" physician who demands that a midwife give a patient more interventions during her birth.

A book that's physically closer to me but more difficult to reach (it's behind me):
"It will be about monomania and the fish-eat-fish world of life insurance in Rochester, New York. The first line will be 'Call me Fishmeal,' and it will feature a menopausal suburban husband named Richard, who because he is so depressed all the time is called "Mopey Dick" by his witty wife Elaine. Say to your roommate: 'Mopey Dick, get it?'"
From Lorrie Moore's Self Help.

I'm tagging Dave, Elizabeth, BadgerBag, Goldfish, and Wheelchair Dancer (who's out of town), if you're not bogged down.

World enough and time (or fear postponed)

Cystoscopy postponed for a month due to raging infection; urologist says everything would look inflamed and require an additional follow-up anyway. Of course that doesn't get at the potential mass issue. In the meantime, she's putting me on Detrol to lower pressures for the next month. Bad news is they may have to redo the let's-see-if-my-bladder-will-explode test at some point since she does it differently. She said she doesn't think the current issue is spine, didn't answer about neurological.

TheurologisttalkssofastsoshecanseesomanypatientsperhourthatmyhusbandandIbetweenusthinkwe mayhaveunderstoodmostofit. I'm surprised since she saw me so briefly two times a year and a half ago that she remembers me sinceshe'sinandoutsofast, but she does. Apparently my dislike of Medical Procedures That Make People Squirm made me memorable since she referred to that. AtleastIknowshe'llbequick when she does the cystoscopy.

I see the rheumatologist this afternoon and the spine doctor Wednesday, and if they feel anything is more urgent, we can negotiate for an earlier time. Someone asked recently how many specialists I have. I try not to think about it, and most I don't see unless there's something new. In the meantime, I am pushing all of this to the back of my mind unless something changes.

I wish I had world enough and time for more in-depth blogging on some of the topics I've covered. There's a list on my computer of topics I want to tackle. My blog says it covers gender and writing, but hasn't yet. So many topics, so little time.

Got heckled by second-graders in the hallway at the kids' school yesterday, so I guess the unit on disability issues really clicked. I just roll my eyes right now, doesn't bother me, but scary to think what could happen when some of these people are young adults.

Thursday, February 14, 2008

Fear

I dread this cystoscopy tomorrow, not only because of the procedure itself, but because of the other procedures it could lead to. When we last talked, the doctor said she thinks my problems are from the spine. I started wondering how many other problems I have are from the spine, too--the sudden numbness in the last two fingers of my hand, the heart arrthymmia, the large patch of pain inside my leg? The sciatica I know is from spine. I have a great imagination, great research skills, and an infinite capacity for worry. I don't want to have any more limitations than I do already. I don't want any new problems. I don't want surgeries or more drugs. I want to take hikes this summer, however short, enjoy nature. I want my body back. I feel old. I don't even feel like I. I undone. I deconstructed. I a jumble of not working, fragmented.

Civil disobedience

There is never enough disability parking at Very Big Workplace. Today was my first day to use the van lift by myself. The scooter shifted on the way there (I've learned I'm actually better at positioning it than hubby and should have), and I wanted to park close in case of mechanical failure or in case I had to walk (very high pain level right now).

Today there was no disability parking in any of three lots. I could have parked in one of two lots over, one of which has no accessible sidewalk (stairs down) and requires driving the scooter behind many parked SUVs and through bumpy terrain. Conversely, for those of you who are abled, you can't see scooters and wheelchairs when they're moving behind your vehicle. The other parking lot also has no accessible sidewalk and requires using ADA-unpassable paving. Either lot would have made me have to walk very far in case of mechanical failure.

The usual lot I use was repaved/redone this summer, but no new disability parking despite the fact that everyone knows there is inadequate disabled parking. Every other place in that parking lot was full, too. Except a Vice President's reserved space. So I parked there. There was a warning sign about tickets, but I didn't get one. I left a note on the dashboard. The space was very near the disabled parking, where I could see who was getting in cars so I (theoretically) wouldn't get run over while using the lift.

When I left, there were plenty of disability places. Another VP got in his tiny expensive car and almost mowed me down in his impatience (I was positioning myself to get the scooter on the lift). When I saw him, I apologized for parking there and said there was no disability parking in the morning, said I'd wait to load my scooter so he could leave, but he ignored me and proceeded before my friend, already loading something in the side of my van, could step aside, while I was behind part of his bumper. He got into his car quickly, but we didn't expect him to back up before Good Friend could finish her task. As far as I know, the penalty for illegal parking should be a ticket or towing, not a death sentence. We were moving aside for him as quickly as possible.

I consider my action to be an act of civil disobedience for changes that officials know they need to make. When the issue affects them, they may be inspired to make a change. Perhaps I have too much a sense of entitlement, but trying to maneuver in parking lots where I can't see drivers (you can't see if someone is in a vehicle when you're waist high) is dangerous. And I'm not the only one who can't get a disability spot and have to walk too far or ride over inaccessible terrain. There's nothing wrong with the administrators' walking ability, and if there is, they can always use a ubiquitous blue tag. Provided there's a parking place.

It's not generally a good idea, by the way, to try to run people down when your name is on your parking place.

Wednesday, February 13, 2008

Important legislation on wheelchairs and scooters

This weekend I posted about Medicare limiting access to mobility equipment (click here).

Let your representative and senator know that you would like them to support HR 1809/S 2103, which will allow people to receive wheelchairs and scooters when they need them to leave home. Strongly consider asking the bill's sponsors, as well as your representative and senator, to add insurance companies to this requirement since insurance companies now use the Medicare guidelines.

The United Spinal Association has issued a press release giving information about this important issue; as they say, "as a result of [the current] rule, many Medicare beneficiaries, young and older, are prisoners in their own homes. If the individual needs a wheelchair or scooter primarily to move around the community, it will be denied." Insurance companies have adopted the same stance, which denies employment, education, access to medical care, and participation in life activities to many people with disabilities.

And remind your represenative/senator about the ADA Restoration Act while you're at it.

Sorry for the flurry of posts; more pain=less concentration on regular daily tasks.

NOTE: Letters to senators/representatives are most quickly handled by fax or electronically; paper submissions by postal mail are often not be received for a while for security reasons.

Obama supports disability rights

Obama supports the ADA Restoration Act and a number of other disability rights/access initiatives. See his brief commentary on video at The Underrepresented.

I've just switched candidates and will be voting for Obama. You can see his platform on disability rights at www.barackobama.com/issues/disabilities and his plan on healthcare at www.barackobama.com/issues/healthcare/.

(This isn't new news, but I had not seen it before, and others may have missed it as well.)

New template changes

Ooh, Blogger changed the header for this template. I like it. I wonder where that statue is. It looks like Paul Revere in Boston, but too tiny for me to tell.

Is that a map of the Underground, or a subway route? Anyone, anyone? :)

I wonder if I was so oblivious that I missed this earlier today, or if it just changed. No telling.

More violence against people with disabilities...

...this time by law enforcement. A reader here pointed out in a comment that a man with a spinal cord injury was dumped out of his wheelchair by sheriffs in Florida. The force with which he is dumped from the wheelchair could have caused major injury. See the video at http://baynews9.com/content/36/2008/2/12/324402.html.

While hate crimes perpetuated against people of most groups historically discriminated against are increasingly prosecuted, violence against people with disabilities continues and is often not taken as seriously. Consider, for example, Dave Hingsburger's posts on Brent Martin, a young man who was tortured and killed because he was disabled. What sticks in my mind is one of the defendant's statements: "I'm not going down for a muppet." Not guilt, not remorse, but self-righteousness.

Blog[with]tv has recently blogged about the violence issue, telling readers about a new Hate Crimes Dossier in the U.K. that lists crimes of violence against people with disabilities. We need something similar in the U.S., but my own learning curve is too slow/pain and time constraints too high for me to tackle that, at least for now.

(I see that Stephen Kuusisto has blogged about the Florida incident, too, with more detail and better blogging than I can muster today. Visit for more information about this case.)

Tuesday, February 12, 2008

Random musings

Insurance companies are run by Satan's minions. What goes around comes around, people.

Administrators don't retain poker faces when you cheerfully just happen to mention when they attempt to blame you for "miscommunication" that you have saved years worth of email as documentation of a particular issue. A potential attorney, on the other hand, is gleeful about several inches worth of paper documentation.

Other people with disabilities are very happy about the changes to the restroom doors and that they no longer need pain medicine after opening them, which makes the requester happy, too. Husbands will get into trouble if they joke in front of your coworkers, "look at all the changes they're making for you," when the building has been out of compliance since ADA and other people don't get ADA and think that all the changes might be mostly for you only.

People stress out when they're standing in line at the deli and they, bored, glance around, and you're there, in the scooter, and they're afraid that they're staring, though they've just glanced, so they look away in the opposite direction, really fast. Okay, breathe, normal human interaction is okay, people.

Some kids like wasabi peas. Wasabi-loving kid will shoot you a sharp look for using "that" in the house in front of her friends, though her friends aren't paying any attention at all. One of friend's parents who is normally very conversational can barely make eye contact/speak with you.

Another kid might worry that you might embarrass yourself to use the scooter at their school on Valentine's Day. And when you ask why, the kid will say that you're a disability person and not many people are disability persons, and you start to worry if they're embarrassed.

That rash that made you think, "oh, textbook meningitis rash" when you woke up this morning? Well, now it increasingly itches, and though you don't have a fever and the infection you've had is getting better, it really does look like a meningitis rash, and you wonder if you should worry and whether, if you go to the doctor tomorrow, he will have his "you worry too much" reaction or his, "oh my god, why didn't you come in before" reaction. (The spots are called petechia, and the only time I've had them before was after respiratory problems during anesthesia, bursting blood vessels from inability to breathe.)

Dear Stupid Cheap Scooter,

You make my butt hurt.

Love,
FridaWrites

Sunday, February 10, 2008

Gratitude

Today I feel grateful for breath. Don't ever smoke, people. If you could see my grandfather, you'd never smoke. He quit smoking well over 20 years ago, though the effects didn't catch up with him until years later. Each breath a struggle. I remember him crying only once before, when my other grandmother was on life support and near death, too young. I never heard him utter a curse word before last night. Medicine and oxygen not enough.

And each time I visit one of my friends I am grateful that I can dress myself, brush my own teeth, leave my home, breathe on my own. And for the technologies and people who help her. Not being able to walk as far as I like or as much as I like, that I can live with. Both health care providers and friends have been surprised by how much I take things in stride, but in so many ways I am lucky. I really am. I can give up walking, or some of it, for Lent, but maybe someday the health problems will get better or new treatments will help. I am grateful that I can breathe.

I am grateful that my grandparents feel they can ask me to be the backup caregiver for my uncle, who has lived with my grandparents his entire life, after their death, that they have that assurance in me, so that they have one less worry for him. My aunt will be the initial primary caregiver, but since she is close in age to her sibling, she will definitely need help as she gets older. My parents have bad health themselves and can't take on this responsibility.

I am grateful for my doctors and other health care providers, who show a lot of patience toward complex problems that have no easy solutions but only tradeoffs, and for their empathy for me. This is more than a lot of people get from their doctors. We've had way too much together time lately, much as I like them, but I am glad that they are good at what they do and good people. And glad for insurance that allows me to get medical treatment and the expensive tests that lead to more accurate diagnosis.

I am also grateful I don't have my son's stomach bug and hope that I won't get it. I am grateful that my children really have excellent health (this bug is an exception), and my husband does as well.

Clarification: I am not being Pollyanna-ish, but it's too easy to focus on my worries. More like Julie Andrews singing about her favorite things, I am shoring up against storm and ruins, to mix references in an illogical way. There is a balance, and I don't want to ignore the good. In fact, I want, for now, to focus on it.

Saturday, February 9, 2008

Disability and Dreams

When my level of pain increased and daily functioning became more difficult last fall, I had a dream about using a wheelchair. The chair became an extension of my body and my intention, and I turned, moved, glided as I have not been able to do since en pointe in ballet, or off pointe, completing a row of pique turns, one smoothing into the next. It's probably the same free feeling people get on a bike, on horseback, skating--I don't know since I've had only zero to two experiences with each of these, which were slow going. I was surprised that sitting in a good seat, my pain was no longer crushing down on me but was lifted, away. I moved easily, finding myself among others who also used wheelchairs. The dream made me think, yes, this (mobility equipment) will work.

Last week I dreamed that everywhere I turned in my scooter, chairs blocked my path and I could not get past them or push them out of my way so that I could get to where I was going.

Real experience of my scooter falls between these extremes. I am not pain free, though I experience pain relief. The scooter seating contributes to some new pains, exacerbating the bad pain I get from bad seating while relieving the worse pain I get from too much walking. The difference is that I can do more but I will still hurt; the rheumatologic factor is not something that's predictable. It's a fine balance and a bit of guesswork how much I can do. But I am far more free than I was. There are physical obstacles to getting around, but not usually so bad as the dream. (I have to say that I hate double doors in buildings constructed before 1990. Glass and metal sandwich, and people can't help me if they want to since there's no room for them to stand. Gah.)

What are your dreams about disability or mobility?

Wheelchairs and Scooters Not Covered by Medicare and Insurance?

As many PWDs know, Medicare and Medicaid require that wheelchair or scooter use be in the home and do not consider leaving the home a medical necessity, but a luxury. Nevermind that many PWDs can get around their homes, but participating in life activities outside the home, which requires more than a few steps, is impossible without mobility equipment.

Now insurance companies have adopted this new "standard," but they go even further, denying medical equipment for use outside the home, even for work, stating that "employment is not a medical necessity." Through private insurance funded by an employer. Of course, this kind of decision makes employment inaccessible to people with disabilities; let's see if someone can file an ADA suit based on that. Medicare/Medicaid assumes people aren't employed, but where is the logic in private insurers of employees adopting these regulations? Plus, you know, someone somewhere, sometime, might consider doing something because it's right to let people out of their homes since they can be. Not only should people be employed if they can and want to be, but many people requiring mobility equipment may not be disabled enough for government benefits. Too disabled to work without a wheelchair/scooter, not disabled enough to go on disability.

Watch what the government does first. People shouldn't shrug off this issue because it doesn't apply to them. Any unfair rules will soon be featured at an insurance company near you as their new standard. And with an aging population, many who don't need wheelchairs now will.

I once read that users of mobility equipment actually save insurance companies money once they have wheelchairs/scooters since they are no longer having accidents and falls, further damaging themselves, or increasing their pain levels, all of which require a lot of treatment. Even an expensive scooter is far less than a surgery or an ER visits. or two, or ongoing pain and medical management.

For me? Yes, I will be using the scooter in the home and have. Especially if the insurance company asks. If I qualify as disabled enough for them. I can push myself to pain that incapacitates me later; an independent insurance assigned doctor would only see the intial pushing, not the incapacitation.

What can you do? Write your senator and representative and let them know that the Medicare and Medicaid laws need to change, and that insurance companies should be required to pay for mobility equipment that will allow people to participate in normal life activities.

In the Mailbox

I received a copy of Activa Sports catalog in the mail yesterday. On the second double page in, an athlete with a disability, a Paralympian who has been featured on The Amazing Race, is featured. Wow, an athletic gear store that features women whose bodies aren't representative of the beauty myth or what I call the fitness myth (like the beauty myth, standards that not all bodies can meet). I don't see Sarah R. on the Activa website, but most of the webpages don't show models.

The only problematic part is the "overcoming obstacles" language. Not everyone can overcome the physical obstacles. Despite the problematic language, the catalog does encourage other real women to share their stories: "Have you or has some you know, overcome an obstacle through sports and fitness. Tell us your story. Email me at Debra [care of] activasports [punct.] com."

I once wrote to Title Nine, which also features real athletes, to request that they consider employing some athletes with disability (there have to be lots in the Denver area, where they're located), but didn't receive a reply to that (I did to the rest of my email). Maybe they thought I was joking. Disabled? Athlete? Disconnect, doesn't compute.

People with disabilities buy athletic gear, too. It makes me more likely to buy from a particular company if I don't feel bad about myself when I look at the catalog, that I am in no way part of the audience they intend. When I can, I like to go hiking; when I was able to, I still danced. When I can again, I will swim. And exercise clothing is a necessity for most kinds of PT.

What, no yoga? :)

Thursday, February 7, 2008

Static electricity and rubber wheels

Every time I touch a metal door handle after riding around in the scooter, I shock myself from static electricity. The more I'm out (or if someone's been holding doors for me), the stronger the shock. The wheels on the scooter are rubber. Friction + rubber + dry winter air=static electricity.

Anyone come across any solutions to this problem? I keep thinking if I keep riding round and round the building before touching door openers or handles that I'm going to spontaneously combust...

Tuesday, February 5, 2008

For comparison

For comparison, 40cmH2O is *high* (not normal) bladder pressure and can cause kidney damage. Mine is 200.

I wish I weren't a worrier. However, I'm impressed that I manage to spend a fair amount of my time out of the bathroom.

Amusing

And today someone for the first time was struggling to choke back laughter because he was so amused by the scooter or me in it. It wasn't a good time for me to Say Something. Stupid brat.

And to think yesterday went so well.

Clarification: This was a twenty-year old, not a little kid. I can see my nephews or nieces finding my scooter amusing and fun on a completely different level. I look forward to giving them some rides.

...in which Frida's privates are invaded

Skip this post if you don't want medical/urology details.

Went to the gyn for the urodynamics today, which, yes, was no fun. It empties fine and things are functional. But. What I didn't tell them is that I finished the water 30 minutes in advance and not an hour in advance because I know what my bladder can('t) hold. Proven I was right in this regard, becasue my bladder pressure is off the charts high. The doctor thought there was something wrong with the catheters, so redid the test with larger catheter. Why is it that things always go wrong with previously traumatized people? Same reading with the second catheter, doctor was in disbelief at how high it is. No wonder I go to the restroom so often.

So--apparently something is pressing on my bladder, either from within the bladder or outside of it, which doesn't sound good (hysterectomy mentioned again). The next stage in the steps of exclusionary diagnostics is cystoscopy with an even larger catheter and possibly dilatation, which she said given this level of pressure and the pain that results, should probably be done under twilight sleep. More missed work time, and twilight sleep and I don't get along. More on that sometime.

What the doctor anticipated was the exact opposite, that my bladder wasn't working and was retaining fluid/getting leaky because of neurological problems and the spine problems. It's still possible it's the spine being pressed on, but less likely. We may get to that eventually depending on how different tests go.

Wavering between thank-goodness-this-is-over, and I-may-have-more-to-worry-about, at least the more invasive test/dilatation roter-rooting. Remembered to take Azo with me to reduce the stinging because it hurts to pee.

Dr. said one thing that's for certain is that I'm completely unique; she never finds an expected outcome with me. My body has its own instruction manual somewhere, but I can't find it.

I hate medical procedures. I really hate them. I'm a nervous, scared, tense patient. And I don't like the urologist I'll have to go to, though apparently most of them don't have great personalities. This really sucks. My legs were so shaky when I left. Thank goodness for the trusty scooter.

One bit of fun: I heard the doctor tell the nurse, so is she going to take her shirt off? What I didn't know is that the nurse was decorating my scooter with Mardi Gras beads while I was changing, and another patient had made a joke about Mardi Gras beads and BSE (breast self exam) earlier in the day. My scooter is bright and colorful now. And now I'll know if anyone I know reads here.

Monday, February 4, 2008

Two owls

Last night at midnight, a pair of owls sat silhouetted on the neighbors' roof, hooting. It's surprising they didn't wake the neighborhood. I haven't heard one since this summer while hiking, and I haven't heard one here since last year. It makes me miss the mountains, nature. I also saw a bald eagle in a tree branch on the lake late Saturday; the newspaper reported last year that they have been sighted in this area. It's a rarity for us to see wildlife here, except hawks and a couple of times, coyotes.

Looking up animal totems from curiosity in a couple of places, owls are associated with perception and omens, eagles with sight and intuition. The more likely reason for the owls' appearance is more clearing of trees just west of the nature area near us for housing and commercial development. I'm not sure why eagles are settling here; the only other place I've seen a bald eagle is Yellowstone, though I've seen golden eagles elsewhere.

Sunday, February 3, 2008

Tao and disability

With disability, you learn to live with paradox and contradiction,
-saying you're fine and meaning it when you're the sickest you've ever been
-finding the joy in the relief of one pain, as other pains increase
-feeling active while doing less
-finding that you can live with paradox while searching for clarity
-learning you can still love people even as they harm you or judge you or hate you
-knowing that silence can be a form of resistance
-knowing that more direct resistance can be instructive
-discovering that disobedience really can be civil and purposeful
-tolerating what's imperfect and finding the good that's in it
-accepting change without yielding to it
-finding that the logical can be found within the illogical
-trusting when you have lost all trust
-having faith in God when you're sure there is no God
-hoping when you know what comes next

Making a Difference

For those of you who work in or teach disability studies, you really are following a calling and making a difference in the world. Disability rights are an important civic issue, and teaching others how to advocate or to think critically about disability is as crucial as teaching people about gender and race. So thank you. Really.

I met another woman last week who had found her calling, in a sales job, not a job most people would think of as their life's work. She had lost her previous job, her marriage, and her beloved son in a month's time. She had difficulty getting out of bed and functioning at all. Driving past a mobility equipment place which she'd passed many times before, she decided to walk in and ask for a job. On the one year anniversary of her son's death, the owner called and offered her the job, not knowing her situation and how that helped turn her life around on that difficult day. So she now helps families get the right lifts and equipment for their cars, advising them on possible problems various vehicles might pose for different disabilities. She'd used such equipment for her son and recognizes that when people are at the point of getting lifts and ramps, it's often for the first time, at a vulnerable stage when you realize things probably aren't going to get better soon and more permanent solutions are needed. What she told me is that it's not that she's giving to customers, but they are giving to her, because knowing they need her allows her to get out of bed each day and to continue on despite her grief.

PS, no matter what she says, she's giving a lot. She called directly to both the lift manufacturers and to the scooter manufacturer to make sure everything was compatible, and let us know that if we purchased a different vehicle, we'd have to have two motors because of the trunk/bumper (thus it would cost us more money than the other initially more expensive vehicle). We got to see how everything would work and how much strength it would require from me, something I couldn't tell from photos of these lifts.

Saturday, February 2, 2008

Question, Supracor cushions

Anyone who's reading tried Supracor seating/cushions? Is it like memory foam (way uncomfortable for me), or does it offer more support?

Good news: we can pay for the better scooter lift with the $1000 rebate for disability modification and the taxes we'll receive back from the minivan. Useful information we didn't know: vehicle purchases are tax free with medical disability and when lifts are installed. Wish we'd known about that a few years ago! I'm not sure I could use the cheaper lift over the long term because I have difficulty bending/squatting (to attach the lift to the seatpost) and sometimes almost fall over if I have to pick something up and there's no wall support nearby. In December, I had to put my hands on the ground to keep from tipping over when I dropped something in a parking lot and in a Starbuck's--embarrassing.

I'll be glad to get the lift because I can get out on my own more without requiring my husband to make trips (saving gas money and the environment, and his time, which is valuable too). It will give him independence as well as me. My other secret reason for being glad is that it occurred to him his new back pain may be from lifting my scooter all the time without disassembling it. He is strong, but it can't be good to do that. I keep telling him if he injures his back, then we're really going to have problems. You don't get a second chance with that. I'll just tell him I need lots of practice driving the scooter on the lift and that I like to do it myself.

Still praying to get that Amigo scooter soon. Please, God, please. This one hurts. My legs are long, too long for this one. And the tiller's too short. And, and, and.

Friday, February 1, 2008

In honor of the administrators...

Via Twinkle Little Star, two YouTube videos demonstrating what disablism is like:
http://twinklelittlestar.typepad.com/letter/2007/12/little-reverse.html

...I dedicate this post to those who think the changes at VBW are just for me and that I'm somehow cheating them, not realizing that others have made these requests for many years and will benefit from them, as will future visitors and employees. VBW knowingly violates ADA laws for building codes that are easily remedied and that have an impact on whether many people can get into a space or use it. Nevermind new and expensive modifications for administrators' convenience and the exorbitantly priced new furniture for some of them. I was readily offered a large some of money toward nonessential needs of an organization I was in last fall (which I turned down), but administrators have been claiming there have been no funds for ADA changes that multiple people have requested? That was several thousand dollars right there from a general fund. Odd that our building was the only one without an accessible restroom, though now it's still without an accessible men's room. A unisex restroom would be fine with me for accessibility.

People with frail health ranging from osteoporosis to heart conditions to fragility from chemo (like my husband's coworker) have difficulties when building codes aren't in compliance. The rules are there for a reason. I've read that from 1 out of 7 to 1 out of 5 people have a disability and 1 out of 2 people have a chronic health condition. Severe health issues will affect us or someone we love at some point in our lives; funny how so many people don't get it until it hits their family or themselves.

For your convenience, ADA building codes:
http://www.access-board.gov/adaag/html/adaag.htm