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.