Huzzah!

This past weekend I went to Texas Ren Fest, camping Friday and Saturday nights. I'd show you pictures, but I think Carapace has the camera. OK, so I'll show you pictures later. I know what you are really wondering is, "how'd it go what with walking around the festival?"

Pretty damn good.

I took two canes, a knee brace and, of course, my orthotics. The combination kept me steady and took the weight off my legs and feet that usually has me done in after a couple of hours. I was exhausted and dehydrated and hurting at the end of Saturday, but a night's rest and plenty of water had me feeling much better Sunday.

Funniest line I heard at TRF this time was from a toddler who observed me and then told her daddy with great excitement, "She has two sticks!" Heh, someone is learning to count. I am glad to have been of service. Second funniest line was from a patron, in mock horror, on her way to the exit. "Someone stole all my money!" It's a fact that money seems to disappear unaccountably at ren fairs. Apparently many people were losing all their money this past weekend. I made a point of asking vendors how their sales were, and each one I asked told me the same thing, that this weekend people seemed happier, more willing to part with their money, than the week before. Almost like some major event had happened that left consumers feeling a bit more confident. I don't know about other business people, but the TRF vendors seem quite pleased with Obama right now.

I didn't buy a whole lot, being mostly kitted out already, but I did get a nice rucksack with a dragon design while I was there, relieving me of having to manage a shoulder-carried bag while using canes. And I got a few odds and ends. There was some beautiful artwork for sale that I would love to have if I had the room. But I don't. Anybody wants a bronze water fountain in the shape of a dragon or a green man, I know just the guy.

Other good things that made the weekend pleasant:

new Coleman propane stove with instant lighting. It was nearly as easy as using the kitchen stove.

new tent with 7' height and enough space for two twin air mattresses. Sadly, one air mattress wasn't worth the attempt to inflate it, but the good one left Carapace sleeping comfortably, as did her tall-sized sleeping bag.

my adjustable portable table! It's not just good for sewing; it also fits nicely into the back of my car and is light enough that even I don't struggle with it.

taking Monday off for recovery. I had a whole day to put things away, wash clothes, and sleep after I got back. And so I went back to work Tuesday happy and feeling good.

Next year:

Don't bring lounger. It never got used.

Remember jacket. Sure, I can just wear all my garb, but it would still have been nice if I remembered to bring a jacket.

inflammation advantage

On the bright side, I'm the only person in the office today not freezing.

Disability denial

Drake, at Cloud Viper, talks about the trouble he has accepting that the body he has always known is a body with disability. One Sick Mother makes a really valid point (in the comments) about you not having had time to adjust after so many years of being encouraged to be in denial. Now you don't need to be in denial anymore; you can take care of yourself and learn to live in the body you have instead of the body that nondisabled people expect you to have. But all those years of denial are going to be a while in the getting rid of.

And even then, there will be times that you think to yourself, "Oh, I'm just a whiner. I'm not really disabled." I do the same thing myself. And then I get out of bed, like I did yesterday, putting my foot down to stand up, and I scream. And all day, people ask me what I did to cause my foot injury. And they look at me as if it isn't the most everyday thing in the world to injure yourself by standing up. And today? Foot is pretty much back where it is supposed to be.

Now, why, when you and I and OSM are so regulary reminded by our own bodies of just how unreliable they are, do we ever have a problem accepting that we are disabled? What difference does a diagnosis make? Nothing at all has changed in the way your body works since you got diagnosed. If a new doctor disputes the diagnosis, again, nothing changes. What's going on that we, and others around us, are resistant to the bleeding obvious?

I think there are at least a couple of factors. A very important one has to do with that damnable stick figure sitting on a half circle. Yes, that faceless, degendered symbol of disability the world over. Ever notice how s/he is always in the same condition, day after day, year after year? S/he never shows up for work with a foot working that didn't work yesterday, or eyes not working that worked only last week. And everyone knows immediately on looking that Handy Stickperson is Special. And, also, Handicapable. Good old Handy is completely healthy, just missing a part or two, or maybe with a nice injury that can be conveniently covered up under clothing. Handy plays wheelchair rugby or runs track. Handy does not need to spend weekends in bed, shaking from pain and in pain from the shaking.

You and me, buddy? We just need to snap out of it. Get with the program. See a shrink for Munchausens. Get right with God. Take a supplement. Stop being weak. But we aren't disabled, right? Because everyone's seen disability. And it is painted blue and uses a ramp and doesn't have people challenging its right to park in the disability spot. After all, those spots have the portrait of their owner, and we don't look like that.

People are always so helpful, screaming at us that there was nothing wrong with us other than being lazy, or stupid, or whatever the adjective of the day was. See how not-disabled we are when so many fine folks have taken it on themselves to call us fakers and complainers? And we agreed, didn't we? We accepted that we must be normal, since that seemed to be the most prevalent opinion. And then some doctor comes along and tells us that our normal isn't. So, who you gonna believe? Some doctor, or your third grade physical ed teacher?

President-elect Obama!

I am so happy. At last, I can once again hear a politcal speech without screaming. It's like Obama has reset the bar for public speaking. McCain's concession speech was good and unifying. And Obama's victory speech was fantastic!

And he gave us a shout out! In our language! In his speech importuning Americans to continue to work together to turn this nation around, he specifically mentioned those of us with disabilities:

It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states.

Now, that may be a small thing, but when was the last time we were called to serve? Or included as part of the key to victory? When was the last time we were seen as part of the solution instead of a problem to solve?

Good start, Obama. Good start.

New Doctor visit

When I moved in March, I kept right on seeing my old doctor, despite him now being 15 miles in the wrong direction. But now he's closing his practice in the area, and I figure if I am going to get used to someone new, it should be someone I don't have to schedule an extra hour of travel time to see.

The new doc is a friend of the old one, so I am hoping he will have some person skills in common, since I like the old one. The new patient visit was yesterday. Summary:

Office is cramped. I don't know how they get people in wheelchairs or scooters to the back. Maybe they move furniture. The scale is inconveniently right in front of the doorway to the hall. Speaking of which, I've lost 10 pounds since this summer. I've also lost .75 of an inch since the last time I was measured, way back in my twenties.

Dr. M. is nice. He listened to me describe my current condition and past things that I thought he should know about that weren't asked on the new patient form. He said that the scar on my nose from the basal cell surgery was well done and acted like he could hardly see it, which either means he is extremely polite or in need of glasses.

He also prescribed blood pressure medication for me upon the one reading, and directed me to buy a blood pressure cuff. It seems a bit much to me to prescribe blood pressure medication off a reading at a new patient visit, but maybe there is something else he noticed or something in his notes from my previous doctor. We'll see. He will find I am a reluctant meds user, so he'd better keep the number of prescriptions low. Already, I misplaced the bottle and had to go on a safari to find it, and I hadn't even taken any yet.

I told him that my cholesterol was high the last time it was measured, but that I didn't want statins because of the associated muscle weakness, and that I couldn't afford any more muscle weakness than what I have. He promptly tested my muscle strength, which revealed itself to pretty much not exist. Ah, the old "squeeze my fingers" trick. Try to break them off, he said. Bwa-ha-ha! Hey, I'm just happy that I can complete a grip. Then he tested my arms and legs, with similarly sad results. Unless he can pull a magic potion out of his bag that will instruct my muscles to actually build, there is not going to be any useful change. (I can see it in his eyes, the question forming for next time. Would physical therapy help? No. No, it won't. But it will be exhausting and painful. Thank you.)

And he renewed my pain pill script, which is good, because we are coming to the time at work where we are standing most of the day. Except when we are bending.

And he wants me to keep a migraine diary, because he thinks maybe I should be taking a preventative. Oh, this will be hard, remembering to keep it. And knowing what to say.

OK, so I begin with that today. Woke up. Left side of head, behind and to the side of eye, hurts. Treatment: Ignore it. Breakfast: cup of coffee with cream, gluten-free waffle with butter. Head still hurts.

Oh, one more thing. I bought that blood pressure cuff right after the visit, since I needed to go to the pharmacy anyways. Checked blood pressure last night at the close of work. Also checked my vegetarian boss's. We have the same blood pressure.

A new book to find and read

Well, begin reading, anyway. All around me are books that I have begun, yet not finished. Is it my fault I forget where I have put them and then have to start over?

At any rate, author Gary Presley has asked me to spread the word, so I am doing so. From his email request:

Seven Wheelchairs: A Life beyond Polio was recently released by The University of Iowa Press.

The memoir is a history -- an American tale -- of my fifty year wheelchair journey after being struck by both bulbar and lumbar poliomyelitis after a vaccine accident in 1959. The Press says Seven Wheelchairs gives "readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable."

Other reviewers have called Seven Wheelchairs "sardonic and blunt," "a compelling account," and "powerful and poetic."

I hope you can mention Seven Wheelchairs on your blog. We all live different disability stories, I know, but perhaps if you find the memoir worthwhile, you might want to recommend the book to others who are curious about what polio or disability in general.

Of course, the book is also available through Amazon and Barnes & Noble.

--
Gary Presley www.garypresley.com
SEVEN WHEELCHAIRS: A Life beyond Polio
Fall 2008 University of Iowa Press

Looks intriguing. Carapace, want to get me another book to attempt to finish?

Everyone else, got any ideas for helping me get all the way through something before misplacing it and starting something else? I've read more halves of books than anyone I know.

Assistance requested

I need help! I've begun a filk, but only have the chorus and one verse down. Now, to the tune of the Eagles' "You Can't Hide Your Lying Eyes," please join me in writing

You Can't Drive with Migraine Eyes

(chorus)
You can’t drive with migraine eyes
Because the lights
Are way too bright
Thought by now
You’d realize
There ain’t no way to drive with migraine eyes

(1st verse)
Silly you forgot to bring your Zomig
Had to make do with coffee and Naproxen
Another drive
It’s going to be a long one
You squint at the road while your head begins to scream

Please add to the desecration of this classic rock ballad by contributing in the comments.

Better living through cheap accessories

I bought a $25 folding table with adjustable legs a few weeks ago, thinking I would use it as Thanksgiving loomed. Then I thought, oh, why not use it now? Why not use it to do some sewing since it will be several more weeks to months before I actually get the designated sewing room cleaned up enough to do any sewing there.

And so I used it Sunday, and it was great. With the legs as short as they will go, the table is perfect to sit at while in my favorite comfy chair, and gives me lot of space for what I'm working on. And it's very sturdy. I wish I had got a table like this before. But I have one now! And that's what matters. Yay! Mending got done! Real projects now stand a chance of being completed! Excitement!

And I really like sewing in the front room. So I might just keep doing that, and just organize the spare room for optimal storage. That would be a good thing, too.

Not accessible

What, you are asking yourself, is that picture? Why, that's the door to the "accessible" women's restroom at the Travis County Expo Center. The other restroom, in the other building we went to, had a large garbage can holding the door open, making it impossible for anyone in a wheelchair to get by. This one, as you can tell, is impossible to open if you use a wheelchair. And once in, while the wheelchair user stall was large enough, the door swung inward, making it difficult to impossible for someone in a manual wheelchair to shut or open the door on her own. But I guess they figured that no one in a manual wheelchair would be there without an assistant, seeing as how every single entry door had a threshold so steep that it required both being pulled in backwards while a third person held the door to get in or out. And then there were the vendor booths and exhibit sites, in the stock barn, placed so that there was a drop off the pavement into sand at each one.

There is a reason why the Texas Civil Rights Project is suing the Expo Center for failure to be accessible despite their recent multimillion dollar face lift. Go get 'em, tigers!

(While the site itself has led Carapace and me to decide we will never again go to an event held there, the Expo staff themselves are decent people working in an impossible place. Thanks, especially to Isaiah. We couldn't have even got away from the car if it wasn't for him going out of his way to fix Carapace's chair.)

Minor league griping

This past week has been rather uneventful, other than the usual slings and arrows. Which have annoyed me more than they normally do, merely because I had been having a good run of it over the summer. While I enjoyed having several weeks without daily pain, it has a negative in that, with the return of the distinct feeling that my joints are shredding and liquifying, I am irritated unreasonably. It isn't like I didn't know that my respite was temporary, and I know it seems petty to be grumpy over having the daily pain again when so many never get a break from it ever. 

Still.... Poop. I would like to be able to go to TRF without my knees and hips driving me to the point of tears. How to manage it? My ideas from the summer seem so paltry now.  Will two walking sticks work? When I tried it out Saturday, when my kneecaps were trying very hard to take up residence on the backside of my legs, it seemed futile. Should I get a new rollator? I hate taking a rollator to TRF, but what else can I do to take the weight off my legs? Scooter? Hated that, too, at TRF. Things that work well on pavement don't work so well on hard-packed, sometimes muddy, dirt. And then there is getting about in the shops to consider. You think your local mall is inaccessible? Look upon the ren fest and note how the lack of shop accessibility is the one area in which there seems to be no anachronism. And my very favorite show is always at the least accessible stage.  What do people have against ramps? Grumble, grumble.

It's still not enough for me to not go. Or to not camp. I am looking forward to it. But I also want to have the best experience possible, so if anyone else has ideas, please pass them on.

Oh, also. You know what I hate that isn't usually painful? Waking up to the sudden sound of a joint going "pah!" And those few moments when I wonder, "OK, so can I still move?" It's especially unnerving when the joint in question is a couple of vertebrae. Anyone else have this, or is it just me?

OK, I'm done with my whining. Anyone else want to grump about relatively minor things? The comments are open. Oh, don't tell me how good I've got it or offer (yecch) sympathy. Whine, dammit! Whine! Or tell me your hints for ambulating at Big Events.

About me....

I left a comment over at Do not read this blog, and Blane asked me a question:

yanub, you seem to have developed a very balanced and healthy perspective on these things. I don't know anything about you--but is there anything you'd be willing to share about your life or background that would illuminate us regarding your outlook? I agreed with your comment about comfort, but still, don't you ever have just a small bit of sadness when you think about your consciousness ceasing to exist?

Do I have any sadness over my consciousness ceasing to exist? No, not really. I regret that, when I do die, there will be people who will be sad because I won't be around. At the same time, it would be even sadder if no one missed me. I fret more at the prospective loss of those I love than over my own prospective death, and want to stay alive because I know others feel the same way about me.

I've lived through a long period of depression, which is behind me now. What got me through my own lack of desire for life was knowing that I was loved, even if I couldn't fully feel it, knowing that my death would affect others and hurt them. And I've never wanted anyone to hurt because of me. But when I am dead? I will be as aware as I was before I ever came into existence. I figure, if I don't mind the previous non-existence, I have nothing to fear from that non-existence to come, either. I really only regret my decades of depression. I wish I could have somehow stopped that sooner, because that is a sort of existence without existence. But a disease must run its course, and there is no fault in being sick. And no turning back time, either.

So, now I am well into middle age, with a body that creaks and gives out like I am well into old age. And while I feel free to grumble when I hurt or have to bypass doing something I would have liked to do because I can't get cooperation from all the important bits and pieces, I also don't really care. I don't care if people stare when I limp. I don't care if they think bad thoughts when I use a handicapped spot and seem to walk pretty good at the moment. I don't care if they keep asking what happened to my neck. Or if they ask about my finger splints. I have no problem saying "no" if asked to do things that I simply can't do. I have nothing to prove, no one to impress, and wouldn't try to prove anything or impress anyone if I did. 

I owe a great deal of how I feel about things now to Carapace, who talked me through my depression and my outrageous anxiety attacks, and who still impresses me with her (un)natural good humor. Oh, yeah, she's my daughter, but I've always admired her as a person. Wearing her reverse headgear to fifth grade with such confidence and hope for improvement that all teasing bounced off her and shriveled away. Her indignation over the school's treatment of a mentally ill classmate while brushing aside her own treatment by the school while she was using a wheelchair. Her intense excitement over her crafting and art despite the high cost she bears with the associated migraines and seizures during a creative burst.

And then there's Elizabeth, about whom I've recently posted. How can I help but want to be a better friend and neighbor when Elizabeth is such a great one across so many miles? Or my friend Sheila, who is always concerned about my welfare even when she is most despondent? Or my religious parents, who were once disfellowshipped for actually caring about people instead of just trying to "save" them? Or my atheist boss who everyday exemplifies gratitude and the sort of humility that comes from really believing in equality? My grandmother who traded pies for tamales, who insisted on being known by her first name by her neighbors because she was her own person, not her husband's.  My grandpa, who completely agreed.  I could go on and on. But the point is, all these people have had and continue to have an enormous affect on me. When I lose one of them to death, they will still be alive--in me. And if I go first, I will be alive in them. We are all shaping lives yet to come, people who will never know our names. Our personalities and goals, our hopes and dreams, everything that is essentially what we think of as our consciousness, we get that from other people, from people who are around us now, and from the people in the past who passed on their hopes and dreams. When I die, then, my awareness of consciousness will stop, but what is essential about it--that belongs to the living, and always will for as long as it is worth passing on.

I was raised Christian, and taught to expect, at anytime, the end of the world and a final judgment that would leave the majority of people ever born in eternal torment. Compared to such a horrible thing, death, plain and simple, is a small thing, and the ability to participate in making the present and maybe the future more pleasant for everyone is a large and wonderful thing. 

Blane, I hope all that sort of addresses your curiosity.  

Hooray for the open road!

I was able to park in my own driveway tonight, much to my relief. And we got an unexpected benefit from the road work. The speed bumps are now wider, which means that getting to my place at the end of the street, past 3 speed bumps will no longer be so jolting to my spine. Or injurious to my car's suspension. So, that's good. 

Still, here's hoping it will be at least a year before they resurface my neighborhood's streets again.

In other news, the ankle is getting better. It stayed in place most of today. If I baby it this weekend, maybe it will forget its wild ways and stay where it is loved and appreciated come Monday. As an incentive to good behavior, I ordered new orthotics since the old ones have lost most of their spring. 

It figures

So, today they closed down my street to do road work. Meaning that I can't park near my place. And, of course, this morning, my left ankle went out on me. The ankle has since been joined by a metatarsal. Now, this may not sound like much to you, but if it doesn't, it's only because you aren't the one trying to walk with a foot that feels like a large shard of glass has taken up residence in it. Parking on the next street over is hellish. I am not happy about having to cross through dark yards from the next street over to get to my street. No consideration for accessibility was made at all. This doesn't have to be done this way. Half a street at a time could be done. The way it is being done is just stupid.

Confidence

My neck was squeaking like mice in an old sofa. And it had been doing this since I had awoken in the morning, with no sign that it was going to simply click into place like I had been hoping. So, out came the cervical collar. I slapped it on over my hair, little caring how it looked. I could fix my hair later. Besides, it isn't like no one isn't going to notice it no matter what. Eventually, people get used to seeing me with bits of gear, depending on the trouble of the day.

A lovely young woman came in to the office a moment later, asking for her paperwork. But she didn't have her official identification. She'd been in before, and we'd let it slide once but couldn't again. She really didn't want to have a picture made, not like she is right now. "How much longer with the eye patch?" "At least two more months. Do I really need to get it made now?"

I was trying to think if I dared assume the authority to grant another extension. "Oh," she asked, "are you alright? What happened?" "Huh? Oh, yeah. Nothing happened. Sometimes I have to wear this. It's how I am. It's OK. ....Your ID, you know, you really need it."

She smiled. "It's fine. I'll get it."

Support EFM!

Why should you help Elizabeth McClung? If you follow her blog, you know that she is a good friend, a generous person, and way, way too self-deprecating to have accepted help before now. Her wife Linda can tell you what they need help with specifically. Linda has finally gotten a Paypal button working at her brand new blog, A Girl's Gotta Fly, because so many of us have begged to be able to help.

Let me tell you how Elizabeth came into my life. She's the one who took the initiative, browsing blogs during a night of insomnia. She found mine, and posted a comment about pain and dislocation. I'm a chronic insomniac so I responded right off, and then went to look at her blog. And I posted. And she responded! She responds to everyone! She's great that way! To Elizabeth, everyone is important, and everyday is a day to be grabbed and lived. And she is astonishingly honest about the reality of life with a rapidly progressive disability.

I said she was generous, didn't I? There's no need to take my word for it. When she and Linda went to Japan, they took all Beth's readers along, too. Tell me, if your health was steadily deteriorating and you had the chance to go on the vacation of a life time while you still had life, would you bring along a motley assortment of people you've never seen? But Beth did, posting wonderful photographs and in-depth coverage of her Big Adventure every single day, no matter how badly she was feeling at the end of a day of sightseeing. While there, she made a point of buying postcards to send to all of us who had asked for one, and she mailed them off steadily while she was still there! And since then, she has continued the fabulous Postcard Project. If you haven't gotten a personalized postcard from Elizabeth, it's only because it's either in the mail right now or you haven't asked.

Probably, if you are reading this, you are already a friend of Elizabeth, and I am telling you nothing new. But I wanted to post about her again anyway, and the advent of the Paypal donation button seems like as good an excuse as any.

Blue Tag

For months, Carapace and I told ourselves we'd be sure to bring the camera to take a picture of this parking space sign.  Today, at last, we did.  Underneath the traditional blue handicapped parking sign is another sign, in red and white:  "If you don't have a handicapped sign, and if you are planning to park in this space, the owners of this property will place on your bumper the following sticker:  I (heart) parking in handicapped spaces and I don't care."

I suppose it would be better if the owners would simply call the police to have the vehicle ticketed, but maybe some people are motivated more by the threat of a public shaming than by a fine.  In any case, I've never seen the two spots with these signs being abused by non-placard holders.

Obama!

In case anyone is waiting to decide who to vote for until I officially announce my support:

Obama!

Check out Obama's disability issues platform!  

And if you are in Texas, vote for Noriega for Senator.  We can do without Big Bad John, who has chiefly contributed to the state image through his hilarious comedy video and concerns for box turtles.

How wheat causes dislocations

It began innocently enough. I saw the fried catfish on the menu and, hopeful, asked the waitress how it was prepared. "Oh," she gushed, "it's coated in corn meal. "Just cornmeal?  I wanted to make sure. "Yep. I've worked here nine years, I know all about how everything is cooked."

By midnight, I knew wasn't as familiar with the kitchen as she thought she was. The evidence? The sores that were developing in my mouth. Sores that make their painful appearance when I've been eating something with wheat in it.  Damn. Damn damn. I took a benedryl, washed my mouth out with antiseptic mouthwash and went to bed.

When I woke up, I instantly wished to stay home.  Some mule driver had come into my room during the night and had their jackass kick me square in the face.  I felt horrible. The sores were hot little wounds. And my sinuses were swollen--another effect of the wheat, combined with the ragweed in the air. I ate some plain yogurt, making sure to get it all over my gums. I took another benedryl. I sat down in despair. Damn that mule. I should take something for the pain. Naproxen? Who was I kidding? I already had sores in my mouth and probably my entire gut. Maybe Darvocet would help.  

I went to work, hoping the Darvocet would kick in. Or the benedryl. Or that my face would explode and kill me. Really, any change would have been welcome.  After a couple of hours, the sinus swelling from the allergies started to go down, though the pain was still relentlessly hanging on. Another couple of dispiriting hours went by. Suddenly---Pop!  My jaw went into place and the pain began to dissipate.  

Wow, my mouth sores had been annoying me so much I hadn't even noticed that I had dislocated my jaw. Too bad, because I could have fixed that right off.  So that's why I felt like I had been kicked in the face. I must have been grinding my teeth in discomfort during the night. I'll try to avoid a repeat of this experience, and take the pain killer before going to bed tonight. Because those mouth sores? Still there. I'm sticking with the grilled catfish from now on.

Another recipe

On a high fat diet because you've cut all the carbs out and have to have something to burn?  Or simply want to make a nice treat but you don't have the energy/skill/accessible kitchen to do anything interesting?  How about making a cream soda?

Cream Soda

• sparkling/seltzer water
• flavored syrup (sugar free if you are avoiding carbs)
• whipping cream
• ice

There are no particular amounts to use, because measuring takes the surprise out of life.  Experiment with what seems good to you.

Pour syrup (this is the sort of syrup used for coffee drinks) and cream into a glass filled with ice.  Pour sparkling water over it.  Mix with an ice tea spoon.

Be careful!  As with ice cream floats, this treat can rise well above the edge of the glass, so you can't see where the liquid starts and the foam begins.  Taste your drink and decide if you need more of anything.

Heh.

Darn liberal elitists.

Texas Sunshower

White light streams through shining clouds onto pastures below.  

(Yes, I took this picture!  It's mine, all mine!   If you want to use it, be courteous and link back here. )

Recipes sweep the disability web!

As often is the case, Dave started it.  Then Frida jumped in.  And since my non-broccoli eating housemate asked me to buy broccoli again, I suppose I should add my secret recipe for getting crucifers into vegetable haters.  And it is gluten-free!

• two heads of broccoli
• onion to taste (dried or fresh chopped)
• water to cover
• one can of broth 
• one stick of butter
• 1-2 cup/s shredded cheese 
• 2 medium eggs
• 1-3 cups liquid (water/milk/cream/broth)
• black pepper
• salt

There's a right way to do this, and the way that I do it.  I'll tell you my way.  

Wash the broccoli and break it up.  It doesn't need to be chopped, because you are going to cook it down until it breaks apart.  Put the broccoli and the onion into a large enough sauce pan, cover with water, and set to boil.  Pay attention or you will burn the broccoli, and that is something you definitely don't want to do.  Add more water if needed.  You will boil until so soft you can break it apart with a spoon.  (Checking to see what I left out, and it's this:  Break up the broccoli!) Turn the heat down to a low simmer.

Add the broth and the stick of butter.  When the butter has melted, add the cheese (I use Muenster, because that's what's been cheap around here).  Stir.

While the cheese is melting into the broccoli, break two eggs into one cup of the remaining liquid.  Whisk it really well.  Now turn off the heat from the pan, and slowly pour the egg solution into the soup, stirring vigorously the whole time.  Stir, stir, stir.  If you don't stir with spirit, your eggs will end up scrambling instead of thickening.  Also, now is when you are breaking your broccoli into tiny bits.  Stir, stir, stir!

Now, add the rest of the liquid, as much or as little as you please.  Taste.  Add salt and pepper as needed.  Taste again.  Get bowl for yourself.  Eat it.  Then dish yourself some more and give the rest to everyone else.  

***************

OK, who's next?  If you also publish a recipe, tell me in my comments.

I hate allergies

"Atopy" comes from an ancient Greek term meaning "out of place."  How appropriate.

Yesterday, I got nothing done.   And it's all because of allergies.  I hate allergies.  Of all the things that my body does to make my life more, er, interesting, allergies are the worst.  I started having slight asthma symptoms at the beginning of the week, but since I was having a fairly laidback week it wasn't anything I couldn't ignore.  And then yesterday, the mucous membranes got into the act.  In a bid to stop the constant flow and sneezing, I was taking antihistimines every two hours.  Everything I took was supposed to work a minimum of four hours, and some for twelve.  But faced with my immune system's insistence on working overtime, Claritin, Drixoral, Zyrtec, and Benedryl merely tuck tail and run.  So, in exchange for minimal relief from the incapacitating symptoms, I got the side effects of lethargy and heaviness and mind-racing panic from the antihistimines.  It's always a toss-up as to which is worse.

I had decided I'd go to the clinic today for steroids if I wasn't better, but fortunately the big storm we had seems to have given me a reprieve.   I'm grateful, because I could see I was headed fast to a full-fledged general atopic collapse.   

Vacation success!

We're back, poorer in pocket but richer in memory and know-how! I appreciated the good wishes sent me prior to taking off for vacation, and especially appreciate Elizabeth's ideas about making things safe as well as fun. I did take that to heart and found us a beach with lifeguards and lots of other people around, in case of trouble.

Also, we ended up not camping. The more I thought about it, the less I wanted to expose Carapace to even one day of unremitting sun, seeing as she is photosensitive. As luck would have it, I stumbled across a funky beach cottage establishment that still had an efficiency for rent at astonishingly affordable rates. So we stayed there both nights, enabling us to go to the actual beach twice on Thursday, and then swim in a pool after the sun set.  It was really quite an old cottage, but all the same it was almost accessible.  If they would just ramp the entrances (which all had high anti-flooding thresholds) anyone could get in.  The door to the bathroom was already plenty wide.  A sliding bench and some hand rails would have made the shower and toilet available to anyone.   But I can tell from the rates they were charging that there are no major renovations planned for these 80 year old cottages any time soon.  I'm frankly astounded that the upkeep is as good as it is in such old cottages.  I'd stay there again, but if I needed a wheelchair....well, that poses a whole set of problems for a community built on sand.

Here's what I did that made our vacation about as safe as it could get for us:

• life jackets--Carapace didn't want to wear one, but I did, and it helped me a lot. Last time I went to the coast, the waves battered me pretty badly and I was so exhausted that I couldn't enjoy it. This time, the life jacket did the work for me so that I didn't have to try to fight to both keep my head up and keep my limbs from being jerked out of place by the waves.
• Dark goggles--they kept both the bright light reflecting off the waves as well as the waves themselves from stinging our eyes. I have a particularly badly shaped forehead for keeping liquids out of my eyes, so not having to deal with that nuisance was great. My goggles, unfortunately, did tend to create a vacuum around my eyes that I had to keep breaking to keep being able to see. But it was a fair trade off. Just, next time, I will try on the goggles before buying them.
• Rash suits--I wore both a sleeved top and long pants, and C wore a sleeved top over her swim suit. This kept us from burning, and also offered some protection in case of jelly fish. Weirdly, we saw no jellies or portuguese man-o-war the entire time, but experience has taught us that there is no swifter end to a beach vacation, so it was good to be prepared.
• Morning and evening at the beach, afternoon in the air conditioning.  Avoiding the hottest, sunniest part of the day also was a big factor in keeping us from becoming toast.
• Cheap canes--this was the result of an unexpected find at the island grocery store.  They had wooden canes for $1 each.  We each got one, and so were able to do some beach combing without worrying about messing up our good canes.
• Cervical collars have more than one use!  This was also an unexpected "find." I use a cervical collar because my neck tends to go out of place on an annoyingly frequent basis.  But I didn't need to use it at night during vacation.  At least, I didn't need to use it on my neck.  Instead, I wrapped it just above my left knee to keep my leg bent like I need it at night, instead of using the towels I had brought.  It worked much better, since it didn't fall off when I moved or need to be readjusted.  Now I know that when I replace this cervical collar, I can continue to get use out of it. 
• Not overdoing it--this was maybe the most important thing.  We made sure to get plenty of rest and never spent more than an hour doing any particular activity.  Sure, there was a lot more we could have done if we had been go-go-go the whole time.  But this vacation was about relaxing, enjoying different surroundings without demands, and being ready to go back home where work and chores await feeling refreshed mentally.
• Coming home with enough time to recuperate--who doesn't need a vacation from vacation?  We went during the week so that I could have the weekend to do laundry, buy groceries, and rest my weary bones.  And rest I have.

I also put to test something else I had been considering, that anyone who hates re-packing might do.  I bought a couple of disposable roasting pans, a disposable grill top (such as is supposed to be used on a regular grill), and instant-light charcoal.  I punched some holes in one of the pans, and bent both pans so that the inner hole-y one was up a little higher than the outer one.  I put in the charcoal, bent the grill around the pans, and lit the coals.  Soon, I had our hotdogs ready to eat.  All I had to do after that was pour water on the pans and throw them away.  Nothing dirty to pack back up!  Yay!  If I was at a park instead of the beach, I would want to put the pans on a couple of bricks or something, because they get very hot.  But for the beach, this was perfect.

Oh, and I made sun tea by using the car windshield and the foil-covered window sunvisor as a lazy woman's solar cooker.  I put water and 8 tea bags in a large sports bottle full of water, and set the bottle between the windshield and the sunvisor.  It made for a strong tea ready to be diluted in my half-gallon pitcher, in just 90 minutes.

Another important thing I learned is that I can really book with two canes.  Next big adventure will be TRF, and I will have two hiking sticks with straps on me, even if they aren't period authentic for Tudor England.  Maybe this time I will be able to avoid the pure agony that comes from dragging one leg around all day.

Okay, okay.  I know, this is educational and all, but did I have fun?  Yes!  I had some very nice food at Moby Dick's and Virginia's on the Bay, where each place went out of their way to make sure C's and my diet were accomodated.  We successfully beachcombed!  We played in the ocean, bobbing over the waves.  A big pelican flew right over my head, close enough to make out the breast feathers even with my goggles on!  And a school of fish moved in on us, very nearly slapping C upside the head as they lept out of the water.  One of them swam right under my foot as I moved to stand in the chest deep waves.  It's a strange feeling to stand on a fish!  We had a long and fun conversation with the evening barista at Sips.  We fed the seagulls at the park.

Was there anything bad?  Well, I did have a terrible cramp in my right calf that still hurts two days later, and that tried real hard to cramp up my thigh, too.  But that could have happened at home just as easily.  And my neck went pretty badly out of place on the drive home.  But again, that sort of thing happens all the time, so it's no reason to not have a vacation.  Besides, that's why I carry a cervical collar everywhere, so it isn't like I wasn't prepared.  And C ended the trip with a migraine.  But again, that was likely to happen anyway.  Because we both anticipated having our usual gamut of problems, we were able to have a good time while also taking care of ourselves.

Not NICE

I just returned from my very lovely vacation, and am catching up on my favorite blogs. And what do I find at Junkfood Science, but a review of Social Value Judgements, a report put out by Great Britain's National Institute for Health and Clinical Excellence for the purpose of shaping its National Health Service's policies and budgeting. Sandy Szwarc rightly declares this document dangerous:

The entire world should care about what this disturbing document forewarns. It is the most palpable document in recent history to bring the same bioethical dilemmas, on the moral claim of personhood and quality of life versus the interests of the state, that were raised in the 1920s.

Szwarc ends with a warning that this devaluing of individual personal judgment regarding one's quality of life is

the inevitable outgrowth of what happens, as history has taught, when health becomes public. When health is a measure of good citizenship. This is the foreseeable results when government foots the bill for healthcare: the state then assumes power to decide what happens to an individual’s body and to determine when a life is of insufficient quality or too costly to society to preserve.

I think that blaming government-run health systems is too limited a view. As we've seen in the US with insurance companies, the corporate board can be just as coldly utilitarian as any government bureaucracy, and will just as readily adopt bioethical reasoning in pursuit of limiting expenditures. The real caution is for us all, no matter what system is in place in our particular nations, to value human life so much that we refuse to allow the machinery of governments and corporations to treat any of us as no more than replacable cogs.

Words Hit Like a Fist bmp

I took the liberty of turning Active Gray Matter's pdf of Dave Hinsburger's Words Hit Like a Fist card into BMPs, for anyone who wants to embed them in their own blog. Sue at Active Gray Matter has also arranged to give away 10,000 of these cards to activists and advocates! So what are you waiting for? Go there now and ask for your cards!

Labels

Via Andrea's Buzzing About:

Only words

Sunday, I listened to the neighborhood children playing, reminiscing about when I was so young and playing was serious work. In particular, I heard two boys talking.

"I never knew that! I am stupid!" He spit out that last word with venom.

I was shocked. How often had that child been called stupid that he so quickly offered it as an explanation?

His friend's voice was soothing. "You know it now."

"I am stoooooooopid!"

Now the friend was astonished. "You are stupid?"

"Oh, I am soooo stupid!"

"I am stupid all the time," the friend countered. "Stupid, stupid, stupid."

"Stupo"

"Stupiddy"

For five minutes, they went on changing the word in singsong voices, two sweet little boys who were spending their time playing peacefully and teaching each other. But you know what neither of them did, not even once? Call the other one "stupid". Instead, the slightly older boy went out of his way to make his friend feel better about his initial ignorance, and made himself his buddy's equal in all ways. Together, they reclaimed the word "stupid," taking away the sting until it was nothing, until the venom was gone and they could no longer even remember the judgment they were mocking.

It reminded me of another time, back when I was a teenager. At the local swimming pool, a little boy told me it was dangerous for him to go out of the shallow end since he was still learning to swim. I told him he was smart. His face broke out in an enormous grin and he rushed off. Five minutes later, he was tapping on my elbow with a burning question. "I'm smart?" "Yes, you are," I reassured him. He took a breath in excitedly, like he had just been given a new bicycle, and again rushed off.

I thought then, as I thought now, what are the adults in these children's lives teaching with their words? Why would a child be convinced he was stupid? Why would a child be surprised to be considered smart?

I need hints and encouragement

This coming week, Carapace and I are going to go where gimps and spazzes aren't supposed to go. Yes, we are going to the beach. The plan is to camp one night, and then spend the next night in a motel so we can go home without carrying sand in our intimate regions. The motel bit I'm not worried about, as long as the room is reachable without stairs. Nor am I worried about the camping bit. Car camping is completely within my capabilities and skill set, and it won't be like we'll be away from civilization.

No, what worries me is the actual beach. I so want to be there, feeling the salt water bounce me around. But I do worry. I can't exactly swim worth crap anymore, with my shoulders always ready to slip right out of place and the one leg's tendency to float in a direction different than the rest of me is going. I don't know...how does one keep a leg from floating sideways? And then there is Carapace and her seizures. They've been pretty much under control, and I do have shoreline life vests for us both. Those are supposed to flip an unconscious person face up. I haven't used one since I was a little kid, so I don't really remember how they worked in reality. I'm hoping that with the life vests, I won't tire as fast and Carapace will have a margin of safety. Oh, and they are orange, which will make it easier for Carapace to see me despite the world being a particularly sloppy impressionist painting when she takes off her glasses. Oh, and I got her some dark goggles, too, which I hope will be good enough for her photosensitivity to not be triggered. And sunburn-prone me will be covered ankle to wrist.

So, anything else I should do to make sure we have fun and that I won't spend our time fretting? What experiences have you all had? Tell me!

In which I take a moment to complain

I taught today, which means I was on my feet, up and down, for three hours. I feel it now. For a change-up it is my right leg that is killing me instead of my left. I shouldn't whine. I've had two really good weeks. Even though I have felt pretty much constantly like I was going to fall over at any moment, I only fell over once, and I have only had one incident of that horrible electric burning stabbing pain in the past 14 days, instead of having more like 14 in one day. So, all in all, good. But I have to repeat today's performance again on Sunday, and then every weekend until the second week of August. On top of working during the week. I hope the legs hold out, because I would very much like to go to the beach after all this is over, and the only way I am going to get there is if I drive myself.

OK, moment of complaint is over. On to other things. Elizabeth is talking about how some asshats think she is faking it. Apparently, you aren't allowed to be severely disabled and still get anything accomplished. Please. May I present Ivar the Boneless, Viking berserker? I particularly like how the Wikipedia article says that after his invasion of East Anglia, "An accommodation was quickly reached with the East Anglians." Yes, I know what it really means, but I prefer to envision old Ivar putting accessible transportation in his list of demands. Then there was Timur the Lame, who would totally have kicked your ass if you so much as hinted that, just because he took over all the territiory between the Levant and India, and was on his way to taking over China, that he was lying about being lame. Yes, and after he was done kicking your ass, he'd set you on fire and then toss your skull onto the closest big pile of skulls he had at hand.

Fortunately, most people with disabilities are nice folks who don't spend an inordinate amount of time plotting to take over the world. But the point is that people with disabilities, with diseases, with even terminal conditions aren't dead yet and have no intention of practicing being dead before drawing the last breath makes it mandatory. Harriet McBryde Johnson is one of the best known faces of that spirit of living fully. When she died, it was, as she had planned, while she was alive, not in a state of mournful waiting, but a state of planning for the next day and the next year, in a condition of action.

What about people in pain? Should they be out pushing themselves? Of course, they should! Distraction is necessary for living with pain. Sometimes, pain is too much to keep going in the way you had before, but life doesn't stop for pain. Usually, you have to do things simply because you have to do them. Not everyone is as full-bore determind as Elizabeth to push physical limits, but everyone stays as busy as possible for their situation. Boredom only makes everything worse. And spending part of your day in seizures doesn't count as boredom relieving. You can check ask my daughter about that. She constantly has projects going, different ones for different levels of daily ability. That's not unusual. That's what people do.

Me, I'm going to finish the laundry and go to sleep. And in five weeks time, I hope I will be driving two hundred miles to salt water and setting up camp.

Can this be real?

And why isn't it available yet?



A power wheelchair that looks like an office chair and weighs less than 50 pounds! Wow!

Site changes

I have made changes to my blog roll. The main thing is that I replaced my list with my disability RSS feed. Stuff that wouldn't transfer as an RSS, I have kept as web links. Most of the blogs I had successfully made the change. Some didn't, either because I find myself not reading them, they update even less often than I do, or something weird just happens when I try to subscribe to them (Evil Lunch Lady, I'm looking at you!). And there's always the probability that I just screwed up and deleted something I meant to keep.

Anyway, I hope you like it, and if you are feeling left out, drop me a line.

Oh! One more thing!

I got to see the city fireworks display from my own backyard! I hollered at the neighbors that we could get a clear view, and then we sat out in the yard, listening to the squeals of the pre-schoolers in response to the brilliant display just over the tree tops. Hurray for fireworks! Hurray for neighbors to enjoy them with! Hurray for silly five year olds!

Ketosis

Well, I have reached ketosis on the induction phase of Atkins. After the first couple of days, this diet got much easier. Since I don't usually eat bread, pasta, or cookies to start with, about the only thing I've given up on a regular basis is corn tortillas. So, I just have to have my tacos in lettuce leaves instead.

Lettuce-leaf tacos (wow, that's a bad picture!)
Friday, I had roast beef with lettuce greens, lettuce, a bit of bell pepper, a jalapeno, 4 strips of bacon, more chicken, flax seeds, chicharrones with habenero sour cream, cream cheese and celery, and cream. And a small glass of red wine.

I have pretty much finished off that chicken, unless I want it to be soup, so I guess I should finish off one of the pork chops. And I intend to make some freezer ice cream, partly because it seems like a good way to mix in the fiber supplement I'm taking.

Now for speculation. Usually, I have terrible burning stabbing pains that erupt in my legs, hips, and abdomen. I haven't had one this week. Is it because of this diet? Or am I just having a lucky week?

Declaration of Interdependence

The best thing about disability is that it really brings home the truth that community and individualism are intertwined. The best community is one that supports individual achievement and difference, and the best individual is one that gives back to community.

Elizabeth is a great example of that in action. Beth has repeatedly defied society's vision of what someone in a terminal condition should be doing (i.e. looking at plants), and dared what so many of the rest of us have only dreamed. But she does it, in large part, knowing that she has supporters, people who think the world of her and her fierce determination. What she does, who she is, how could she do or be without any of us? When we cheer her, we cheer us, too. And she gives back fully. By daring to take risks, she encourages the fainter hearts among us to do what otherwise might only be a dream. Carapace (yes, I'm prejudiced here) is another person whose independence and individualism is supported by a community, and she gives back to make the community stronger. She doesn't do it the way Elizabeth does. She does it by dint of her sunny personality. Right now, she can only work a few hours a week, due to her seizures. But because her boss tolerates her seizures, her husband and I provide transportation, and the US taxpayer covers her medical expenses, the reward is that everyone who comes to the desk when she is on duty goes away feeling better about themselves. She has a compliment for everyone, insidiously spreading good will and positivity every chance she gets. Take a look at Stephen, over in the UK. He's the first to tell us all that his wellbeing is dependent upon a community that cares about him as an individual. From his loving wife, to his mother-in-law, to the infamous NHS, a community web exists that allows him to make his individual contribution to the greater good. Where would his kids be without him? Or the many friends and kinsmen who count on him as part of the joy in their world? I could go on, but I'd really rather people tell me about how they see this interdependence in their own lives. (Yes, that's a plea for comments).

Where the individual wheels, the path becomes smoother for those coming behind, who are not trailblazers, and for those who are adventurous by nature to take new, fresh risks that will continue to open the path for the community. So, by supporting individualism, the community benefits by having individuals who are more able to be part of the community.

Happy Interdependence Day, everyone.

Days 3 and 4, and this looks like it will be worth it

Wednesday, Carapace came to work with me and she made sure I ate just like I was supposed to. I had a piece of cheese, some proscuitto, and an onion for breakfast; beef, chicken, sour cream, lettuce and a bit of cheese and salsa for lunch; then a dinner of beef, zucchini, and mushrooms. For snack, I had chicharrones.

Today I didn't eat breakfast, what with needing to go to the store and to pay some bills before heading off to work. But lunch was roasted chicken, baby greens salad, a little cheese, and sour cream. I haven't eaten dinner yet tonight either, as it approaches midnight, though I just had a snack of chicharrones and sour cream with habanero salsa. I also had a Coke Plus today, which I had never had before. It is a diet Coke with vitamins and minerals. Other colas have been doing this for decades, but Coke just started this recently.

I split the Coke with Carapace, who was at work today, too, even though she thought she wouldn't be able to make it as she was anticipating a major brain meltdown. But it never happened! Sure, she was in pain and lost partial control of the right side of her body, but she never once went unconscious! Oh, let her tell it herself....

Day 2

Having started the Atkins diet Monday, I wasn't sure what today would bring. I made some eggs with fiber supplement, cream, and a tablespoon of buckwheat for breakfast, and only ate half. Lunch/dinner was 3/4 of a small zucchini, 2 green onions, procuitto, and gouda cheese with mustard. Snack was the rest of the zucchini and a small piece of beef (about 2 inches square). And right now, I'm drinking a small glass of wine. I'm not positive about the wine, but I am willing to be convinced that it has effectively no carbs (really, that's what I read online. And if it's online, it must be true. If I want it to be.)

Anyway, Tuesday was much easier than Monday. I think that not eating as much overall was a help. I don't normally eat all that much, so the portions were daunting. And I ate more cheese than anything else today, and I very much like cheese.

In two weeks time, I dream I will have a large helping of kasha (buckwheat groats), many servings of vegetables, and a handful of my favorite cereal (Not all at once! That would wreck the diet. I'll just work them in during the week). My precious, precious cereal. My favorite cereal ever, for which I looked high and low for years and found the day before starting this diet. Ah, Mesa Sunrise, why aren't you on all store shelves, with your amaranth-y, flax-y goodness?

If you see this box of cereal, buy it. Oh, it is so good, even though it is pricey.

Butter that bacon, boy

(This salad in a bacon cup is from Not Martha)

Monday, I started the Atkins diet. I'm doing it with my daughter, Carapace, who is trying it to see if it will limit her seizures. Me, maybe I will lose weight. Or not. I'm mostly doing it as moral support. It's hard being on a diet all by oneself, and a lot easier if family participates.

I am doing it without the knowledge or blessing of my doctor, who is concerned about my cholesterol levels. Am I concerned about my cholesterol levels? No. They tend to run high in my family, yet no one seems to have any troubles until their 70s. The doctor wants me to stop eating bread and butter. As he told me what he wanted me to do, I kept pointing out that I don't eat wheat products, therefore, I have very little reason to use any sort of spreads. In an entire year, I don't quite finish off one quart of cooking oil or a pound of butter. Whatever caused my cholesterol to be too high for his satisfaction, it wasn't my diet. At least, by being on Atkins, in a couple of months, I will finally have something to give up. And I look forward to that day, because Monday's meals were tasty but way more fatty than I am used to.

Breakfast: 2 eggs, cooked in butter, one cup half decaf coffee
Snack: boiled egg
Lunch: A fatty pork chop and 2 cups of lettuce, with an olive oil dressing and cheese
Dinner: Who can eat dinner after all that fat? It took me all afternoon to eat lunch.
I have drunk a lot of water today, which I don't normally do, so I guess that's a benefit that I wasn't expecting.

I did breakdown and have a handful nuts, which I understand are a bit too carby for this stage of the diet. But I wasn't driving 30 miles home without something for my brain to burn.

Tomorrow, I'll try for more cheese and some zucchini. Doesn't that sound nice? Zucchini with cheese and proscuitto.

I'm really looking forward to more vegetables in two weeks time.

My car hates me

So, yesterday, my daughter and I had big plans to go to the local ren faire and then go swimming, if our bodies were still up to that. I drove on out to her place at the end of a dirt road to fetch her. So far, so good. We got back into my car, and then I realized I need to get something out of the hatchback. So I got back out, opened the hatchback, lifted the cargo lid, and bent over to get the item. As I was bending over, the cargo lid came falling back, smacking me hard on the bridge of my nose. It was one of those blows that leave you literally unable to see anything for a moment, as all the nerves of my face reeled in shock. Somehow, though, it wasn't broken so I got back in the car, only to hear MD's horror as the blood began to bubble up through the cut I couldn't feel since my entire face had gone numb from the blow. Yes, it hurt horribly, but that didn't stop us from continuing our plans.

We went on to the faire, down another dirt road and had a pleasant time. Then we left. After a couple of minutes on the road, I heard a strange noise. Then MD piped up that she heard it too. I pulled over, and, sure enough, my brand new tire on my brand new car was completely flat. With a hole in the sidewall. Poop. Now I have to deal with getting the tire replaced through warranty, and I can't say as I want one from the same manufacturer.

Oh, and my face still hurts. The cargo lid hit me right where my glasses sit (fortunatly, I wasn't wearing them at the time) so everytime I put them on for up close work, I aggravate the injury.

Despite my car revealing its Decepticon leanings, it was still a good day. We were rescued by Sir Lancelot (MD promises to describe this) and learned from the woman whose drive I had pulled into all about an evac insurance plan that will cover emergency helicopter cost for just $50 a year. Once MD is signed up for that, I won't worry so much about her down there at the end of her dirt road.

TGIF

This has been a hard week on my pissy joints. We're shorthanded at work, so I put in some extra time during what turned out to be a very busy week. It isn't so much that I hurt. It's the feeling while walking or standing that I am about to collapse. MD was getting after me for not using my cane, but, seriously, my hands and arms are also about played out this week, too. Everything is a bit tingly all over, and achy all under.

But the weekend is here! I can take my time at my own pace! I will do laundry, and hem up another pair of pants or two, and maybe do something fun. And pay some bills and do some prep work for my summer class. Oh, and buy groceries. That's very important, what with there being nothing left in the fridge. I try to fix enough food on weekends that on weeknights, getting dinner consists of dishing out leftovers. But I didn't do that last weekend, and I have paid the price by mostly not eating when I got home.

Oh, and I have managed to teach the boss how to reduce my shoulders for me. I can't do it myself because I have too much scar tissue built up in my left shoulder; ironically, I'm not flexible enough to do it myself. Usually, it's just my right shoulder slipping out of place, but this week has been so hectic that my left has also been trying to make a break for it. If it wasn't for having a laptop and the ability to lean back with strategic placement of pillows keeping my shoulders in place, I couldn't be typing right now. Anyway, the boss reduced my right shoulder twice for me today. She's getting quite skilled at it, and is no longer squicked out when she hears the joint snap back into place.

Looking for Something to Read?

Go read Happy Fun Spaz. Encourage her to keep writing.

Thank you.

All in all a nice day, with a gimp superpower

Sunday was Father's Day here in the US. Though I wasn't all excited about eating at Applebees, the prospect of hanging out with 2/3rds of my sisters and a niece as well as making my parents happy was irresistable.

Planning on hitting the river after eating, I put on my swim gear--long black workout leggings, long-sleeved high neck stretch shirt, and river shoes with old orthotics. Then I hit the road.

On the way, I realized I had forgotten Dad's card. I stopped at the dollar store on the way to see if there was anything left worthwhile. Amazingly, there was my dad right there. Not in the store. On a card. It looked just like him, down to the mustache. Only, anyone would know it wasn't him, because the guy in picture was jet-skiing. He had a look of terror on his face similar to what my dad would have if anyone could manage to get him in the water at all. It was, therefore, perfect. Dad thinks he may have to frame it. He spent the time before the meal came imitating the facial expression of the guy on the card and generally being silly. Dad may not always have been the steadiest provider, but he may well be the most unselfconsciously goofy.

Taking leave of the parents, we headed for the river, that bain of Dad's existence. The parking lots were full, but I have a tiny car, so I was able to park fairly near the jump-in point. Yay, tiny car! We got to the river bank, tubes, towels and car keys in hand, and put the non-water stuff to the side. (You might think that's just inviting theft, but no one takes anything there. All they'd ever find would be towels and random keys.) We forced ourselves into the frigid waters. And then made a serious mistake.

We started tubing downstream without having planned to.

About half a mile down, I pointed out our predicament. Three vehicles, and not one of them would be downstream. Baby Sister suggested we walk back. I said, if we were going to do that, I had to do it now, because I can't walk far and we were already too far. I tried to get over to the bank, but my feet got stuck in the muck. With a great deal of effort, as my sisters and niece floated on ahead, I freed my feet at the cost of my shoes. Now there would definitely be no walking back. Good thing those were old orthotics. I wonder how far down those shoes were sucked?

Having learned from Dad that serious situations without any good solution require enjoying the moment, I paddled up to the sisters. Baby Sister again said we'd have to walk back to the starting point. I said that wasn't happening since I no longer have shoes, and stuck out my bare feet. A good laugh was had by all and we floated the rest of the way down to the usual getting out point, observing various waterfowl and swimming snakes (yipe!) and splash fighting with gusto. The splashing resulted in me seeing, for the first time in years, Niece with no mascara. She got the worst of it, but she loved it.

At last, we were at the get-out spot. The river taxi was there, picking up people who had rented tubes from them. That was not us. I suggested we ask for a ride anyways and discovered at that point that my gimp experience made me the only one of us four who didn't think anything of asking people to do things for me. The river taxi people didn't care at all. I excitedly informed the siblings and child, telling them to see if they could go, too, since there was plenty of room. But they cowered in fear.

With great power comes great responsibility. Which meant, I was the one who had to go for the SUV to fetch the others and their tubes. At least I got to soak Baby Sister's seat with my wet butt instead of my own car seat. And Sister J and her daughter got to go down the perilous rapids in my absence that I couldn't have managed anymore, what with the whole needing fast reflexes to not crack your skull thing that goes on there.

I did have to end up walking, though. On the hot gravel parking lot. With no shoes. My feet, which would usually simply be in pain from the experience, are now shredded and toasted, too. And my hips hurt. But I look forward to doing it again, only with better planning. And new river shoes. I have many ancient pairs of shoes and orthotics waiting their turn to appease the river goddess.

Goodbye, Harriet McBryde Johnson

As no doubt everyone knows by now, Ms. Johnson has finally died, neither young nor old. In Too Late to Die Young she explored her realization that she need not spend her life preparing for death but live as if she had as many tomorrows as anyone else. She was as sassy, as fiesty, in her writing as you'd expect from a southern belle. May she long be remembered and celebrated.

Over did it

Yes, I over did it. For that, I am paying the consequences. My legs, hips, and feet are swollen and aching. My ankles are considering never speaking to me again (go ahead, ankles. You never have anything nice to say anyway). My back is sore. My wrists feel twisted and my hands are prickly. My right shoulder is trying to make a break for it. Various nerves keep pinging to let me know of their deep and abiding unhappiness. I knew this would happen. That's why I kept putting it off. But I really needed to do it, and there is still a lot left to finish.

But at least I got half a box unpacked and put properly in the closet.

Religion, hardship, and belief

In Screw Bronze!, Elizabeth eloquently discusses the way that her old church friends have deserted her, offering weak promises of prayer instead of comradery. In the comments, Gaina inquires how Elizabeth can remain "a christian after everything you're experiencing"?

As an atheist, I wish to respond to that: Why shouldn't she?

I was once a Christian, but am not any more. I didn't drop Christianity because bad things happened to me. Bad things happen. I think monotheism creates an unnecessary problem of evil, but that's an intellectual standpoint, not an emotive one. Of all the former Christians I know, and I know plenty, not one of them stopped being a Christian because of bad things happening to them.

People who remain religious either don't feel the same degree of intellectual dissonance with their religion or find enough comfort in its myths, rituals, and world view that their dissonance is minimal in comparison. And that's pretty much all there is to it. And if believers and nonbelievers alike are willing to look past the vocabulary differences they have and get right down to meaning, generally they find they have more in common then they have as differences.

Accoutrements

I see where Amanda of Ballastexistenz has gotten silver ring splints. Good for her! I hope she enjoys them and doesn't lose them and break them, as is my forte. I do still have my thumb splints, held on by elastic because the bracelet bothers me.


My new equipment acquisition comes in the form of, yes, ugly shoes.



Oh, those aren't so ugly, you say. But you are wrong. Because these are what I will be wearing everyday no matter what else I am wearing.



They are very comfortable shoes, but having them is, for me, a concession that I had sworn to myself I would never make. Yet, here I am.

I went to the orthopedic shoe store with the best of intentions and highest hope. Maybe I'd find something that was a least all one color, even if it was a trainer. Maybe I'd even find something with some nice detail! The pedorthist brought 4 boxes of shoes. We started with Finn Comfort, an ugly but all black shoe that could pass as office casual. I walked from one end of the store to the other. He went to fetch an arch orthotic. I walked again. He retrieved a pair of MBTs, which worked great for my hip, but was nearly impossible to balance on with my left foot's severe pronation. We tried another shoe, but I was back to dragging my foot and near-collapsing every few steps. And so I knew what the final box would contain, and what I must buy.

New Balance.

Damn it.  

a bit of whinging

Poopy poopy poop poop.



OK, first, I think I have tracked down my migraine-inducer to the latest GF flour I was using. Back to corn and buckwheat! But in the meantime, I have a mouthful of cold sores and the intestinal distress that lets me know that things don't look so great on the inside either. One week and running. So to speak. Maybe by the end of this week, it will finally all be out of my system. But I have a lot of this flour leftover. Any ideas on what to do with it?

Second, it's hell time at work, which means a lot more physical movement than my joints like. Everything hurts. Except for the things which are tingly with pinched nerves. Things like, oh, my hands.

Third, I'm not very happy with people purposely getting in the way of me doing things that make my work place more accessible or with them making comments about how I do things. I don't care if it isn't the way you do things. It's the way I do it.

But fourth is funny. My housemate just woke up screaming and prancing around from a giant cockroach having run into his pajamas. I only have pain. He has a cockroach in his drawers. I think I'm ahead.

Change

I've been planning on writing on the topic of identity for some time now. With Elizabeth going through the repercussions of a serious seizure, I think maybe now would be a good time. So, Elizabeth, this is for you.

Back in the late 1980s, I could write up a storm. I could read a dense academic book, cover to cover, in one weekend, and push out 10 or more pages of coherent prose about it. I can't do that anymore. What happened? I had a major, protracted period of depression, and emerged from it different than I was. Different, but not worse. I now can't read dense prose without falling asleep, and have to reread pages, repeatedly, if I am sidetracked at all. I struggle to keep focus in writing, to have a consistent thesis or even theme. But like I said, I'm not worse for the changes. I also used to be dysthymic and anxious. Now, no, not really. I can't remember the last time I panicked or spent the day in tears. My brain has re-wired. There have been trade-offs, but I am not displeased with the new me. While it has taken me a while to accept myself as I am now, I do indeed accept me. And I never did before.

MD used to read 500 pages in a day. She was such a voracious reader that she reviewed books just to have them sent to her. She'd get a dozen a month, and still be borrowing books from everyone and every library. Then she went into what was essentially a year-long seizure. She also finds herself falling asleep while reading, which she never used to do before, so her reading speed has slowed down to maybe 300 pages a day, which is nearly half what it once was. But, she tells me, there has been a trade. She now vividly dreams what she has read, in such detail and color that she prefers her new ability to the old one.

We change all the time. The changes can be outward--stretch marks, loss of strength, loss of bits and pieces. They can be inward, with loss of mental agility or even new gifts to replace the lost old. We are shifting, never the same. The idea of self as static must give way to the idea of the fluid self, pouring over the terrain of life, adapting to whatever environment we find. Here we are fresh and clear and bubbling. Here we are constrained, dark, and deep. Here we flow underground, and there we re-emerge as a spring. The important thing is to keep flowing, and we each find our ways of doing so.

Who are these freaks?

It's Blogging Against Disablism day, and I actually have a post up for it!

Elizabeth of Screw Bronze! got me thinking more about how I see myself. And how, from my perspective, I'm absolutely normal. It's everyone else who is weird. What do you mean, you don't pick things up with your toes? You have a hard time with clothes that have back zippers and you can't scratch your own back without a tool? When something is just a little too far away behind you, you actually move back toward it instead of subluxing your shoulder and just reaching further? How freakish! I don't know how you can live like that.

MD and I were talking about this earlier tonight. We both find that we are surprised to learn how much most other people are built differently than we are. Last week, I learned that one of my sisters can't pull the skin on her shin away from the bone. See, I thought everyone could, but apparently, no, I'm the odd one. MD noticed that her husband's hands and feet aren't nearly as creased as hers. Again, it turns out that he's what passes for average. So that's "normal"? Who knew? Not us.

I suppose that if I were to wake up tomorrow with a "normal" body, it would be nice to not hit the wall of pain that immobilizes me if I can't rest. But I think it would be hard to get used to my new limitations and I'd probably end up breaking something when my body didn't give the way I have come to expect.

We started talking, MD and me, about how our being different and our family members and friends being different than us, is no big deal. On our own, or with certain family members or friends, we aren't disabled. Everything we need to do, we can do. We have what we need to do what we need at the pace we need. It's only in going out into the world that we find ourselves disabled. I'll find myself having to carry too much weight or bend over too often, and parts of me will start going numb from pain or subluxation. There will be heavy doors I cannot open, steps and ramps I cannot climb. Though most people can't look at me and tell that I am disabled, that door, that incline, disables me. MD is tall and robust looking. She also has a large side helping of autonomic dysautonomia to go along with her serving of EDS. So, yes, she does need to sit down. Right now. In fact, she's going to lie down for a moment. Offer her a seat, and she'll take it. Refuse a place for her, she's still going down.

To us, it all so unnecessary, these doors, those stairs, that lack of seating. We go to our respective homes, and the disability falls away. We are our own normal again. And we wonder, who are these freaks who design a world that disables people?

Blogging against (dis)Ableism

It's "disablism" to the Brits, and "ableism" in the US, but in either case, it means the attitude of treating people with disabilities as fundamentally unequal. And on May 1, the Goldfish is once again leading the annual web campaign to highlight the problem.

Whiner

In 2002, a French woman was told by her doctor that she Ehlers Danlos syndrome and that her life over. Amazingly, rather than immediately hit him with the nearest blunt object, Clara Blanc has decided to fulfil his verdict by seeking death. She claims she isn't suicidal, but all the same, wants the right to demand that doctors administer lethal drugs whenever she wishes.

Clara, there's virtually no chance that you will ever read this, but if you do...









GET OVER YOUR DAMNED FOOL SELF!

Fuck's sake, girl, you've got crappy connective tissue. It makes life a bitch sometimes, doesn't it? But chances are that it isn't going to kill you. And you won't likely become more of a vegetable than you already have made yourself into with your self-pity festival. Yeah, you'll probably have to use a wheelchair at some point. Big whoopdedoo. There are people having bombs lobbed at them right now. Others are being attacked by sadists wielding machetes. Some people are being held in small, dark places, tortured and unknown. And every single one of them is fighting to live. You want to die? Do it yourself. Freaking wuss, can't even take responsibility for your own death, much less your life. You claim to want to be the arbitrator of your death? What makes you think you can do that when you won't be arbitrator of your life? You can't face up to the hard choices in life. You want everything easy, and when you found out that your life won't be easy, now you want to be guaranteed an easy death.

And look at the company you are keeping. Dignitas? The Hemlock Society by any other name is still a freaking death cult. They are nothing but bastards who see someone poised on the ledge, ready to leap, and begin shouting "Jump! Jump!" You need to make new friends. People who take life as they find it and live it, knowing this is their one shot. You have plenty of time to be dead, but only now to live.

What I've been up to lately

The great thing about having a blog titled "yet another never updated blog" is that no one is the least concerned when your posting drops off for days or weeks or months. Hey, I warned you in the title, didn't I? But I've had several ideas stewing for a while, just no time to develop them. But at last, the time is at hand, so to speak.

So why haven't I had any time? Well, I've been moving. It has taken me a month to do it, packing boxes and taking them to the new place in my tiny little car. One Tercel load a day makes for slow going. I did get a big truck rented and two healthy male friends to load and unload the truck for me over Easter weekend. Then there was the dreaded deposit clean-up. Thanks to family and friends for what help they could give. I know I was an absolute grouch by the end of it. But it is all for the best now. I'm closer to work, and have a housemate to split living costs and do the heavy lifting. Eventually, all the boxes will be unpacked, and I'll know where my earrings are again.

Moving was complicated, as was rather expected, by the decision of my right shoulder to go AWOL. It made driving lots of fun, too. It first fell out while driving home from work with MD. She plaintively begged, "Why are you jerking the car?" as her joints were jolted every few moments. "My shoulder is dislocated. It hurts to steer." "Oh. I'll fix it for you when we get to your place." And she did. I'm ashamed that I can't reduce my own shoulder. It's a skill that would come in handy quite often. Especially once the darn thing slips out, because while MD could get it into place for me, we both knew it wouldn't stay. A dislocation is followed for a couple of weeks with subluxations. Over and over again, I had to get people to reduce my shoulder. MD, the SIL, and My Dad (hmmm. He'd be MD also if I keep up with my routine abbreviation pattern. OK, he's My Father). Alright, then. MD, SIL, and MF are the only ones I know who have a feel for where a shoulder ought to be, and aren't afraid to put things where they ought to be. Other people...well, let's just say other people are squeamish. Since even most doctors act like reducing a joint is a major operation, I shouldn't be surprised.

And I'm glad it was just the one shoulder. Glad and surprised. I only had the usual swelling of my legs and subsequent pain, but not even my arches subluxed. Not even when I went to the zoo for my parents' 50th wedding anniversary! Wise choices in footwear make a big difference. And with that affirmation, I now plan to make a foray into the orthopedic shoe store to buy more ugly but supportive shoes, what with the older shoes being not only ugly but downright decrepit.

The joint problems in the legs have waited until this week. Both feet have been playing their "how much of a sprain can we create just standing here" game. And yesterday, my right knee tried to make a break for the back of my leg. I took this as a sign that I haven't been sleeping with enough pillows, so I bought a new one to prop me up better. I still need a new knee wedge, though. My old one is less a wedge and more a pancake. A bright pink pancake with square sides. Okay, not so much a pancake as a layer cake with icing for a six year old girl's birthday party. But with a stingy mom who only made one layer of cake. Still, sleeping propped up properly let me sleep for nearly 12 hours, off and on, and that has done wonders for my wandering kneecap.

I've completely lost track of where I was going with this. But in the days to come, I will update my book review on Short Bus, and talk about euthanasia. So, if you only read this blog when you remember to occassionally check, then check it a couple more times over the next week. I may even have a new picture of Raaaahr! Monster to share.

Shucks...

Girl, Dislocated has put me on her list. What list, you may ask? Why, this one:



So now I am forced, forced, I tell you, to update my blog again, despite its title. For the rules of this award are to pass along Kayla's blog link, and to point out 10 other excellent blogs. This is a really neat way of making sure smaller blogs get their kudos, so on to the winners' circle, in no particular order:

1. Through Myself and Back Again
   
2. Y Laurie
   
3. Bums & Bellybuttons
   
4. Screw Bronze!
   
5. The Old Foodie--Lileks shows you pictures of horrible food. The Old Foodie shows you how to prepare it.
   
6. Respectful Insolence
   
7. Girl, Dislocated (Backatcha, Girl!)
   
8. Crimes Against People with Disabilities--not a happy place, but a sadly necessary one.
9. Polite Dissent
10. In Sickness and In Health

Well, you know what I've learned from doing this? I've learned that I really need to update my blog roll. And if you think I should be reading your blog, leave me a link. Then, maybe someday, I'll move your link from my bookmarks to my blog links.

Elizabeth McClung in Japan

Anyone who isn't reading along with Elizabeth on her Dai Boken ("Big Adventure") is an ol' poopy head. Seriously, get yourself over to Screw Bronze! and read what may be the best ever disability travelogue on the web.