Friday, November 28, 2008

What Do You Do After Thanksgiving?

For U.S. readers, anyway. We had planned to travel and be outdoors all day, but the weather's not good for that (scooters and predicted rain don't mix). We definitely don't hit the crowded stores the Friday after Thanksgiving, with or without the scooter. Too risky with my weak bones.

A number of years ago we started putting out the Christmas decorations on Thanksgiving weekend--I think we'll do that today, though we need to do some cleanup first. Much easier with our two recent splurges, Christmas CDs by Enya and Celtic Woman. And we often go to a movie or watch old movies on long weekends. Tomorrow we have a double birthday celebration with extended family.

My Labs Show a High Specialist Count

Who knew that there is a liver specialist? Well, there is, and I got a call from the rheumatologist this morning that he'd like me to go to one of those because my specialist count isn't high enough on my workups. My liver counts have been up since right before surgery--who knows, probably gallstones or elevated alkaline phosphatase from bone issues. The last go-round of this was when my daughter was a year old and I got everything ranging from full set of bone x-rays (whole body) to bone scan to every lab test known to man (or actually, woman). And we found--nothing. Except some increased bone uptake/stress fractures.

I think I'll ask the rheumatologist if he wants to sign me up for Medical Mystery because they generally have a good outcome and get to the bottom of things in thirty minutes.

I'm not really concerned right now, just annoyed, thinking sheesh, another costly round of elusive something-seems-to-be-wrong-but-isn't, but best to be sure I guess. I've already ridden this test-go-round ten years ago--my bone problems can lead to elevated results and it could be something as gallbladder. My doctor does not think my pain meds are high enough to cause problems, but I'm going to see about the pain management injections anyway so I can ease off the medicines and give my liver more of a break. I hope I was not too vehement with, "I don't drink!" because I really don't, though suddenly I would like a glass of wine with dinner now that I really shouldn't.

The other rheumatologist would have just ignored this. The other rheumatologist did just ignore this, come to think of it.

Thursday, November 13, 2008

Obama and Disability Issues

Obama made disability issues an important part of his platform; now we have the opportunity to advocate the importance of disability rights and health needs, to press their importance to the new administration.

To encourage this endeavor, Andrea from We Can Do has written to request emails to Obama about disability issues:

I'm trying to encourage more people with disabilities, our loved ones, colleagues, and other allies to write emails to Obama to increase the visibility of disability issues among his staff. Letters are wanted not only from across the United States but also from around the world. The following Call to Action explains more about how and why:

Please visit the website for more information on how you can help.

Saturday, November 8, 2008

Happy Birthday!

For Sunday:
Happy birthday to you,
Happy birthday to you,
Happy birthday dear NoSnoopy,
Happy birthday to you!

And to many, many more years of a beautiful friendship with you, may these fourteen be multiplied many times. You've always been there for me, through my triumphs and my mistakes and failures and my laughter and my tears, through experiences that I never thought would be mine. You've tolerated long conversations as I've tried to calm colicky babies, helped me as I waffle about big decisions and small ones, sympathized when I ended the fun at the cemetary by running back to the car, learned to sing the doggy muffin song, and even put up with me the year I forgot. I always have one person for sure on my side (as do you). Thank you. This is a friendship that is forever.

In recent news

My daughter was surprised that Obama won this year's election at school since Bush won the last one. So she polled all her friends and had them sign a list if they had supported either Obama or Clinton. The list surprised me--there are kids on there whose parents I would have thought aren't liberal, ones whom we'd avoided discussing certain issues with. With the ADA Restoration Act and this election, I'm excited about some of the possibilities.

But--news flash--texting, walking, and wheelchairs/scooters don't mix. Please look out for other people. Other families were also letting their boys play football behind my scooter last night at volleyball--dangerous to me and to other people. Both my husband and my father-in-law had to stand behind me to protect me. Plus it's really not appropriate there--it's distracting and disrespectful to all the girls playing (several games going on at the same time).

My brother-in-law has had a death in his family and will be here shortly to stay for a few days. One of our grandmothers was moved into assisted living--it's good to have her nearby rather than in another state. Our son's in withdrawal mode again, and my depression continues. I'd still like to move. This quitting work has been a mixed bag.

The kids, I can't keep up with them. They do some extracurriculars with school, thank goodness, but that means they're there even more hours. They each are very active in scouting. One's in a school service group, takes guitar and art after school, is on an art history academic team, is in choir, plays the violin, and plays volleyball. The other plays soccer, takes a building stuff class, and is one of the three from his grade on the spelling team. And I get lonely...I need real part time work, I think, but flexible in some way. I don't know. 60-70 hours a week, too much; 0, well, I am not I and don't even take care of the regular volunteer projects I should.

Am I depressed? Yes. Job loss (even self imposed) plus health issues can be depressing. I do think I should go back to my regular psychologist to figure this out.

Thursday, November 6, 2008

Clue, A Board Game for Abled People

When someone in a wheelchair or a scooter sits in front of glass doors, angled perfectly, poised to enter, looking longingly in, don't walk around them, open the door, let youself in, and let the door close again. This. has. happened. twice. recently. My jaw dropped. I couldn't even respond.

-When designing a hospital parking lot at a distance from the hospital, put in a disabled parking space or two or three or five if it's a really big lot.
-And put a ramp into the sidewalk, so the disabled person doesn't have to trot with the cars.
-And when you do put a ramp on one sidewalk, futher down, near the traffic circle, make sure that there's a ramp on the other end of the sidewalk so that the disabled person can get off the sidewalk rather than having to back up to where they started.
-And when you put another ramp in, past the traffic circle, don't have the second ramp end behind a bunch of cars parked against a wall so that the disabled person cannot pass.

When you see a disabled person loading her scooter into her car all by herself, just like a big girl, sure offer help if you're worried she might need it. But for goodness' sake, she doesn't want to discuss her diagnosis with a complete stranger.

Stop asking me if I have MS. Whether I have MS should not change your interactions with me. I'm the same person, and knowing what I "have" doesn't change your interactions with me. Next time, maybe I should say I have MS.

When teaching seniors and those with disabilities, please remember we're not preschoolers. Let us retain some dignity, please. Please. (This for the Wednesday swim teacher, my goodness, she takes the cake. I'd not go if they were all like this. The others are not like this, not at all.)

Wednesday, November 5, 2008

You're So Pretty the Way You Are

I've been listening to my old Cranberries CD in the car, it's from--gasp, wait for it--the mid '90s. My daughter says, "Mom, this music is soooo weird." But it brings back memories of our first tiny, two-story house, listening to that music while typing upstairs at my desk, overlooking a giant cedar tree that harbored redbirds and doves, and the squirrel that would bounce along the fence to torment both birds and dogs. Hammering away at papers while listening to the Cranberries, Dead Can Dance, the Police. The internet was a brand new concept.

And the year before, Robert Altman also had a new concept. In his movie Prêt-à-Porter, fashion designers prepare madly for a new show in Paris, and newspaper and magazine editors perch eager for the season's trends. After the preparations, a hushed audience sits ready to receive the modeled clothing. Instead, a model walks across the stage nude. Another follows, and then another, to the music "Pretty," by the Cranberries. The final model to emerge wears a bridal veil and carries a bouquet. She is heavily and beautifully pregnant and also nude, probably in her third trimester: "You're so pretty, the way you are..."

The fashion "designer's" message: that beauty is inherent in the female body. Our beauty is not to be found in fashion. Of course Altman should have gone further and included women of a variety of body types, with racial diversity rather than tokenism, with disabilities as well. But the message to me as I listened to the Cranberries' song and thought about the film hit me hard. As I heard the opening chord, it hurt--because my body, it feels inadequate in so many ways. I want to change it, hide it, cover it. I'm in the therapy pool with the seniors. And the people my age and much older, swimming fast laps in the other pool, with beautiful bodies that move gracefully and with ease. But then I hear, "you're so pretty, the way that you are."

I see so many types of people when I go swim; they no longer move easily, their bodies bear signs of mastectomies, arthritis, osteoporosis. It is this that I want to share with each of you, and what I would like to share with them: "you're so pretty, the way that you are."

For now, I am disabled. Will I always be so? Maybe not. People ask me how long I will use the scooter, what my "plans" are. I know what I would like to do with my body. I'd like to be swimming fast laps, doing ballet, hiking difficult trails for miles at a time. And perhaps I will. But for now I am disabled, and I don't want to hide myself, change myself, to satisfy others' conceptions, to make them feel more comfortable. Because a scooter, sometimes slow or awkward movement, it makes people uncomfortable. And people think I'm just not trying enough. So I listen to that, I finally internalize that message, and think, yes, I can do this, I can open this kind of door. I'm lazy, fearful, and what was it the one woman said?--people can't get well until we're right in the head, that's why we don't get better. So I "right" myself in the head, being careful but pulling on my inner reserves. And instead I injure myself, predictably, despite my carefulness and my joy in movement, passing the limits I'm told I have and listening to the ones who tell me I don't have them. What I want to say is this:
"You got to say it if you want to,
But you won't change me."

The only clip I can find of this scene is dubbed in another language; skip to minute 6:00:
Kim Bassinger is the reporter.

A clearer version of the song: