Another joint bites the dust

Friday, I somehow badly subluxed my left shoulder, as well as having the usual slippage in my neck. Needless to say, I was not happy. My housemate mostly managed to get the shoulder back in, and it turned out he has some basic massage skills, so he was also able to relax my neck enough for the vertabrae to slip back towards their original home. Still, sleeping and folding laundry and really attempting to do anything at all during the weekend was likely to be brought up short as my right hand grabbed my left upper arm and I offered whatever curses came to mind, which was a lot. By Sunday night, though, I had pretty much assigned the blame for the continuing nuisance to me handwriting more than usual. What with being left-handed, I figured that, since I wasn't exactly babying my arm, I had managed to inflame the tendons.

But I don't think that now, since this evening, the stupid shoulder seized up again. And this time, with Carapace's help, we figured out that the problem is orginating in the collar bones. Damn things are twisting, which locks up the shoulder, which then makes the muscles seize in the upper arm. It has been so bad off and on this week that I seriously considered seeing my doctor. Why did I not see him? Because experience has proven that any appointment for a subluxed or dislocated joint will coincide with a spontaneous reduction in that joint. I am a desperate woman to even think for a moment that seeing a doctor will be of any use in anything other than lightening my bank account and wasting my time with pointless tests.

So, I don't know what to do. This past weekend my attempt to go enjoy myself ended up with me standing and watching, afraid to put any new pressure on my shoulder as it started acting up again. This weekend has grander plans: road trip, museum, maybe some downtown San Antonio driving during which it would be real darn convenient to be able to steer. So, what to do? Anyone have any bright collar bone ideas?

A Best Chance

Via Media dis&dat, here's a Dallas Morning News article explaining the problem with the two year waiting period for Medicare for people approved for Social Security Disability. I assume most of y'all that pop by here need no explanation as to why that rule is one of the stupidest regulations on the books, but go on and read it so that you can point it out to non-Americans who want to take a moment to feel superior as well as Americans who live under rocks.

The current push to establish a national health care plan may not come to much at all, but it is also the best chance in years to make needed reforms to Medicare rules. Even my beloved backward state of Texas supports ending the two-year rule (though I don't trust our two Senators to ever do the right thing, even when the state legislature has passed a resolution). So, if you haven't made your voice heard on the health care debate, at least pick up the phone or shoot an email to your Congress Critters telling them to make sure to end the 2-year rule on Medicare.

One point that isn't made clear by the article is the cost of not granting health insurance to people who have already been found too disabled to work full-time. A lot of people on disability could, theoretically at least, work part-time and would like to work. But while they are untreated, they can't work. Pain, seizures, lack of mobility equipment and so forth robs them of two years of productive capability. During that two years, skills rust, licenses become obsolete, and health declines to the point that the possibility of re-entering the workforce becomes evermore remote.

One of us?

Thanks to EDS Alert Newsletter, I learned that a Swiss doctor is speculating that Michael Jackson may have had Ehlers Danlos Syndrome. And if you don't read French, you can read the article in mangled English, thanks to the power of Google Translate.

What do I think of it? Well, not much. I'm not big on following celebrities, so I have no idea if his symptoms really do match up with EDS. But even the speculation is helpful, I think. So few doctors have any clue at all regarding EDS. If a few of them read this article and start taking joint hypermobility seriously, then I will feel that something good has come from the circus that has arisen in the wake of Jackson's death.

Well, then.

I have been very, very boring of late. Perhaps I have fallen off the face of the earth? But, no, terra firma is still firm, even if I do not stand firmly upon it.

You who care will be gratified to know that I am doing well physically. Yes, my joints are still crap, but that isn't likely to change unless the blue fairy gets off her ass and starts granting some wishes. My mental gears have been grinding something fierce, but I think I may be pushing past that now. We shall see. I've been in a state of high distractability the past several months, so I have quite the pile of things I either need to do or want to do but can't remember to finish or can't sustain the drive to finish or whatever it is that one need in order to see things through. On the plus side, I have a lot of projects started!

For one, I have finally begun cleaning out the room that is supposed to be the sewing room and has been cluttered with unpacked crap since I moved to this house. I actually have the sewing desk cleared off and the sewing machine set up. I actually mended something, and have to mend two more things tomorrow.

For another, I am trying to learn Japanese. This is mostly an outgrowth of my latest amusement, which is to go to a Japanese website and run it through Google translate. The resulting hilarity has finally provoked my curiousity enough that I have to know...why in the world would what is obviously "born in" (as in, "born October 5,1982) get translated "made of malt"? I have to know! So I have to learn.

I'm still sketching, though I need to be more regular about it. I am pretty pleased with my progress, even if the constancy of my practice leaves much to be desired. Oh, well. If I was going to let lack of follow through stop me from doing things, I'd never do anything. It would be the same success rate, but with no fun.

Oh, yes! Something I did at last accomplish! Listen up, y'all. I have been having this idea in my head that I could make my lap board actually work well as a laptop board if I just finagled with it. After staring at the limited selection of hardware in our local Mart of Evil, I finally saw what I need. Exactly what I needed! See, going back and forth between two aisles of useless crap and staring sadly at the stock does work! OK, this is what I bought: a roll of two-way sticky foam tape and a package of one foot long square dowels of varied sizes. I went home and put two strips of two-way tape one on top of the other toward the front of my lap desk. Then I got out the largest of the dowels, that just about is the width of the tape, and put tape down its length. Then I stuck it further back on the desk, using my laptop as a guide so it would be about an inch from the back of the laptop. This has been great! My padded lapdesk now can have my laptop on it without the laptop overheating, and I have a nice cushioned lapdesk to keep the no longer so hot laptop off my lap. And I like the angle much better, too! This is better and cheaper than anything I have seen for sale purporting to be a laptop desk. So, if you have a lap desk you like that you couldn't really use with your laptop, now you know what to do!

Stand by Iran

Bon Jovi and Iranian singer Andy Madadian have recorded and released this cover of BB King's "Stand by Me" to show support for the people of Iran. What a wonderful way to buoy the spirits of Iranians during the current crackdown! I will now never hear this song without thinking of Iranian courage.

Yo

Beth alerts me that I have been unusually quiet, even for me. So I reckon I best give a holler before people grow concerned. I'm OK, just feeling unsociable. Which probably means I need to work on that before it gets worse. So, Beth, thanks for prodding me.

Let's see, what's been going on....Saw my parents on Father's Day. Got to meet my sister's boyfriend at last. Nice guy, but can't barbecue worth a damn. Not that I said that. Even I know better than to insult a man's barbecuing skills.

Summer has been nice so far. I've been able to get wonderful local tomatoes and squash and yard eggs from the produce stand a few blocks away. The onions are about spent, but the melons are up, and so is the okra and soon will be the beans. Oh, and there are lots of cucumbers. I wish there were greens. Maybe if I get there earlier.

Summer is also kinder to my joints than the other seasons. And I at least have the chance to go to the river and fool around in the water. I'm trying to do it once a week, because water exercise is easier on my joints. Carapace and I went to the old mill dam this past week, and think we will go there the next time, since it is fairly close (only 15 miles away) and the water is warmish and not too fast.

Another thing that has been helpful is going off Red Yeast Rice. My doctor wanted me to take it because I wouldn't take prescription statins after reading about side effects. You know, horrible muscle pain (especially in the legs) and even liver damage? Hey, turns out, Red Yeast Rice has the exact same side effects. I stopped taking it, and now I just have the usual joint pain from arthritis and instability instead of the really frightening pain I had in March and April.

Bwahahahaha!

Do you hate cleaning the kitchen? Do you like giant combining robots, even though--especially though--they make no logical sense? All is explained here, where Nobody Scores.

These aren't bears

A friend emailed me, telling me that she had seen a bear. I told her that all I had seen were some deer and domestic cats. To which she replied, "Did the cats have on little aprons?"

Um, yeah. See:

Google, what's up with Blogger?

Seriously, I am getting sick of Blogger randomly refusing to recognize or set cookies. Every few months, it's a fight. And I'm not geeky enough to remember exactly what steps I took to work around it previously. Did I just wait and things improved? Completely re-install my browser? Cast chicken entrails into a brazier and read the portents? Be sure to allow cookies to be set is the "helpful" advice. Yeah?

How come every other site I use has no trouble with setting cookies? Yahoo can manage this, but not Google? Live Journal? Facebook? Yeah, they can all set cookies, even if my enthusiasm for Facebook rivals my loathing for family get-togethers and school reunions, and Yahoo pretends every two weeks to not know who I am as part of its "security". What up, Google? (I've also been having trouble with Google's search acting all kindsa weird. Again, what up? Why are suddenly re-using open tabs instead of opening in new ones? This is not how I have things set.)

So. If you use a different blog host, and are happy as you can be with it, let me know. I'm once again pondering moving this puppy to a different kennel. One with easy customization and image uploading, and that will be easy to transfer to. If you have a suggestion, please leave it in the comments.

Sketchy!

The final four of my holiday sketches! I know you were hardly able to contain your excitement. Truthfully, the sketches look better in real life than in the scans, but they aren't shabby in the scans, either. And this time, I remembered to use thumbnails instead of large pictures, so the page should load faster.

After observing the heron on the dunes, I went down to the visitors' center. It hadn't opened yet, so I shared the vista with a couple from Kansas. He was using a powered wheelchair to get up the multi-level ramp to the look-out. Seeing nothing strike my immediate fancy, I headed toward the center's ramp to the beach. They had a similar idea, and got there first. The ramp goes to the beach, but not to the water. This worked out nicely for artistic purposes, as the gentleman left his chair on the paved platform and, with the help of his wife, limped out to one of the benches to better view the Gulf waters. This sketch shows the chair, with footprints leading away. A dune hides the destination.

(I've read that there is such a thing as a portable walkway/ramp now, and that it is used at some beaches. The US National Seashores need to invest in some. Yes, they have beach chairs free for the use, but it takes a strong person to push them and most people who use wheelchairs do not have strong people to push them. They have their spouses, their moms, their children, who are just regular strong or even on the weak side. As someone who has often had to push a person both heavier and taller than myself on tricky terrain, I plead on behalf of all the pushers, please get the walkway/ramps.)

It was getting close to 8:30 when I finished the wheelchair sketch. I chatted with the couple, and then opened my cane/seat so that I could sit watching the beach as it came alive with color and people. This beach scene shows a handful of intrepid bathers wading into the still cool waters stretching into the horizon.



Remember that heron sitting at the top of the dunes? When I went back to the beach, it (or possibly another heron. I don't know one gray heron from another) had moved near the water.

First, it was standing in the partial shade of a picnic table canopy. The canopies are just slats, and at so early in the morning, the canopies threw stripes on the sands. I was able to get closer this time, sitting at the next table over while looking at the black-striped heron. The black on gray was fun, and I decided to leave the picture in the graytones I first rendered it.

After about ten minutes, the heron broke free of his prison garb in order to hunt along the water's edge. Gulls and plovers fluttered out of his immediate reach, so he struck a watchful pose, waiting for some smaller critter to forget caution. I also left this one black and white.

Thanks for taking the time to look at my sketches. It was a great experience, the first of what I hope will be many day trips just for the sake of sketching.

Back and Up

I'm back and rested from my seashore shenannigans. I camped overnight at Padre Island National Seashore, enjoying good weather and more peace and quiet than I usually get from my neighbors at home--even if the dingleberries in the next campsite over did keep honking their horn around 11 pm. At least they stopped by midnight. This was the very first time in my 50 years of life that I went somewhere completely by myself for vacation. I travelled maybe too light, but it was OK, since it meant less to deal with both at the destination and coming home. I was very glad, again, for having bought an easy-to-pitch tent. Not even the evening beach winds could keep me from being able to set it up by myself. However, next time, if it is for just one night, I will probably just sleep in my car and if it is for more than one night, I will bring a lounger, because I can't even pretend to sleep flat on my back for more than an hour.

I trundled out to the water's edge the night I arrived. No one else was out there at all. Once I turned off my lantern, there was no artificial light. I figured I would get to see the moonlight and stars reflect off the sea foam. What I did not expect was to see the shoreline flash softly in blue and purple. I bent to examine the source, turning my lantern back on. It was the nasty seaweed that litters the beach! By day, it is quite ugly. But at night, the plankton that live in it biolumenesce up a storm! All these years I have gone to the beach, and I had never seen this. If you go, make sure to go to the shoreline when there is no one else there with lights or fires so you can see for yourself. Other beaches may have other colors, depending on the plankton. It's really wonderful.

One of my main reasons for going down was to get myself into regular sketching again after, lo, these many years. I took a small sketch book and some pencils and charcoal, and spent the morning after camping drawing whatever interested me.

Earlier today, I finally broke out my pastels to add some color to the drawings and have managed to scan in the first three of them. Let's see how they turned out, shall we?


This first one was done at daybreak. When I got down to the beach, the sun was just coming up. By the time I got the rough proportions of beach, sea, and sky pencilled in, the sun was off to my left, high enough in the sky that I couldn't see anything but blinding white light on that side, but not high enough to bring out color. For the most part, the colors of sand, water, and sky were indistinguishable. But still, there was plenty of light for the plovers and pipers to find their prey in the tide. The color I've added in is actually more than what you would have seen with the naked eye, but it's pretty close.

By the time I finished with that, the sun had risen enough to bring out the yellows and roses along the beach. This small shell was left in a tiny crevice made by the receding tide. I thought the shadows and colors around it were interesting, even if I didn't quite capture what I saw.

When I went back to the camp site, I looked over the dunes and saw this magnificent gray heron observing the hustle and bustle of the campers. He was quite large, maybe three feet tall standing at the crest of the dune. I should probably have drawn him with his neck extended, but this is the pose he settled into, so I went with it. I didn't want to get too close for fear of spooking him, but the only time he showed any sign of perhaps flying away was when a karakara swooped in nearby. But a three foot tall heron is a match for a karakara, so they quickly ignored each other. The heron would move, later, as I'll show you tomorrow.

Off to the beach

I'll be less active online than usual, what with me daring to leave this laptop at home as I take myself on my very first solo holiday. I'll let you know if I have any exciting adventures.

May disability blog carnival

If you didn't know before, you know now to head on over to Same Difference for the list of links. Set aside a chunk of time, because they are all good reading.

Pass along

Ooh, I have a pass-along award! This is the sort where someone tells you they like your blog, and then you pass the honor on to more people. It's a good way of learning about other blogs, as well as of letting folks know you think highly of them. One Sick Mother gave me this one, a Premio Dardos award:

The Prémio Dardos is given for recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing. These stamps were created with the intention of promoting fraternization between bloggers, a way of showing affection and gratitude for work that adds value to the Web.

Now, who to pick, who to pick. So many good choices, and only ten spots to fill. Trying not to duplicate OSM, here's the list:

• Moon Phases--Lisa writes engagingly about making her way through life after a work-acquired injury
• Mind, Body and Soul--the very best medical blog I read
• Frida Writes--musings on personal life and the world, through the lens of disability
• Bad Cripple--William is one of them thar uppity cripple types
• Through Myself and Back Again--always enjoyable and thought-provoking
• Cara Makes--a craft blog with stories
• Andrea's Buzzing About--science, work, family, disability, art, humor
• En Tequila Es Verdad--atheism, politics, and lolcats
• The Old Foodie--astounding recipes from the past, of the sort that make you hold tight your Betty Crocker
• Media Dis & Dat--simply the most comprehensive blog on disability news

Hooray for the Evil Side

I suppose I should talk about myself and how I am doing and blah blah. But doing that will only get me wound up into a rant, and not a fun one, so if I'm going to rant, lets rant about something far more important:  Those damnable Autobots.

If you are a Transformers fan, or inescapably linked to someone who is, you have no doubt seen the recent episode, "Rise of the Predacons." When I viewed this episode with my housemate, I summed up the Autobots as a bunch of able-ists. When, later, my daughter also viewed the episode, her reaction also was "bunch of able-ists!"

Now, for those of you who have somehow managed to miss out on this touchstone of geek pop culture, in the Transformers universe, there are two sides which have been at war for hundreds of years. One is the Autobots, which in the current incarnation have a firm base on Earth and control of their home planet of Cybertron. They are the self-proclaimed good guys, led on Earth by Optimus Prime and on Cybertron by Sentinel Prime. Playing the part of the villains are the Decepticons, led by Megatron. The Autobots are supposedly on the side of freedom and life, while the Decepticons are into power for the sake of power.

So, if you were a permanently disabled Transformer, which side would you want to be on? I'm telling you, there's only one side that will have you for you, and that is the Decepticons.

Look at "Rise of the Predacons." In it, Elita One is revealed not to be dead, but instead to have been somehow combined with a spider to become Blackarachnia. As Autobots, including the two aformentioned Primes, discover that she is alive but now different, they each declare their revulsion and pity. Oh, sure, Optimus is all about wanting to cure her while Sentinel is speed-dialing Dr. Kevorkian, but the upshot is that neither one of them can envision a Transformer society in which somerobot who is part organic can be accepted and thrive. It's kill or cure, million dollar babycakes.

Meanwhile, what is the leader of the eeeeeeeevil Decepticons doing? He's on a road trip through space with his disloyal henchbot, Starscream. Megatron does not need to be palling around with Starscream, and if he were to get fed up with Starscream's constant jibes and machinations, he could always easily get away from him. Why? Because, at this point, Starscream has nothing left of himself but his head. And yet, this annoying, trash-talking head is still seen as a valuable contributing member of the Decepticons, worth being toted around everywhere. Sure, he's not fully respected, but that's not really different than when he had a body. And when the Decepticons come across Blackarachnia? Yeah, they call her a "techno-organic freak." But they will also offer her a job, a vital role in their organization, seeing her as valuable for her skills and knowledge. The one thing they don't do is throw her a pity-party. 

So, here I am, feeling lately particularly vulnerable in this current economic climate as my body discovers new ways to give out on me. Which side would I prefer my own employers to emulate? Freedom-loving Autobots with their fetish for the normal or scheming Decepticons who don't care how you do it as long as it gets done?

All hail Megatron!

So, um, happy belated Blogging Against (Dis)able-ism Day! 

My housemate vlogged about this after we discussed it. Let's see if I can successfully embed the video!

And then it got wholly depressing

When last we met, I was venting about my terrible, horrible no-good, very bad day going to the neurologist. Why is it that, I say "I have this pain," the medical response is "maybe there's something wrong with your nerves!" Oh, fine, Doc, ignore everything else I am telling you. Let's placate you with playing Tiny Taser. 

The neurologist was very nice, I must say. She did the usual poke, poke, pound, pound, before doing the electrical conduction test. What is an electrical conduction test, you ask, all doe-eyed and innocent. Why, it's two horrible things put together: being stuck repeatedly with needles, and being zapped with electricity! Yay! Doesn't that sound like fun? Doesn't that sound like it would be even more fun if you werealready so tired and in so much pain that you could barely pull yourself around? One thing it does, besides give you two kinds of pain you could have done without, is contract your already worn-out muscles. Yay! There's nothing better for exhausted muscles than forced contractions! Except the prospect of going to work right afterward and having to be on your feet and dealing with people. 

After my torture session was finished, the neuro asked me to walk around a bit, which I did as much as I could, which is to say, I collapsed a couple of times when my leg buckled. Then we looked in tandem at the MRI results. I was pleased with this turn of events, since the previous neurologist I had seen not only didn't show me my MRI results, he hadn't seen them himself.  The upshot of the whole thing was that she doesn't see any substantial nerve involvement. Some narrowing in a couple of discs and some bone spurs in the spine. But not enough to cause all my problems. This is no surprise to me, because I'm pretty damn sure that most of my problems come from the way my hip and knee slide all over the place. But what do I know? I just a person who inhabits this body. 

So, let's go on to this week. Monday. Time to see the orthopedist for the follow-up. He tells me essentially the same thing as the neuro, and I tell him that the neuro had already told me all this, and that I wasn't surprised by it. Certainly not disappointed. 

That's right, he says. If the nerves were involved, that would be very bad. All the things with the nerves would be huge problems that he couldn't do anything about.

Oh, I say, brightening, then what can we do? 

"I can send you to a pain clinic for cortisone shots or you can do PT."

Now, this is not happy news, and I made that clear. I think I looked like I was about to cry, because he suddenly looked like he realized he had made some bad suggestions. I explained that I have done PT before, and that I found it pointless and exhausting. That I am open to PT only if it is going to do something to stabilize my joints. That I want pain relief, but not pain relief alone. That I need to be able to keep my job. That I fall down. Often.

Now he looked at me as if for the first time, as if I had mentioned joint instability for the first time. Jeesh. It was asked about in the new patient form. And I told him face to face. Really, why do I even fill these things out or bother with offering information before a doctor has done playing House?

"Do you use anything now to help with the instability?" 

Duh. What's that black thing propped up in the corner next to me? Oh, yeah. It's called a "cane."

"Maybe a quad cane? Or a walker? Or a wheelchair?"

All that would be fine, I told him. That I actually have used those things under particular circumstances. Except that I couldn't use them and do my job. I explained about my job, what I do all day. 

"There's nothing I can do, really, for intermittent instability."

"I wouldn't call it intermittent," I replied.

"Well, you don't fall down all the time."

!

!

!

No shit, Sherlock. This hardly makes me the Rock of Gibralter. There are houses of cards that stay up longer than I do, though. That's what I wanted to say. What I said was:

"There has to be something. I can't keep falling down at work. And I can't keep having this level of pain and get through a work week. Isn't there a brace or something? Can't it be that the joint instability and the nerve compression in my spine are making things worse together? Can't we do one thing to help?"

At this point, he finally thought to ask about my instability in my knee. He wanted to know which direction it is unstable in. That's easy. All of them. I showed him, saying that I'd be glad to just reduce the overall instability somehow, that maybe that would help the hip and the pain.

"How about a knee brace? Have you tried that?"

Oh, at last, we have gotten somewhere. No, I haven't tried a knee brace. Not a real one that actually fits and doesn't ride up or down my leg and lasts longer than a month of daily use. (Why haven't I? Because such things are prescription, and look at the trouble I have had in just getting this far. I swear, every medical device I have ever had prescribed has been gained only by me insisting that Something Be Done Now.)

So, now I have a knee brace that does seem to offer some degree of stability. So, that's nice. Though, so far, it hasn't actually helped with the pain, I am hopeful that it will after I get used to it.

But I told you in the subject that this experience is depressing. And it is. Because the reality is, I need to find another job. One that pays at least as much, if not more, and also has health benefits. And that I can use a quad cane, a walker, a wheelchair, while doing.* And I need to do it soon. In this economy. And I have to tell my supervisor this, because she is also my friend, and depends on me, and I don't want her to find out only when a reference check is made. 

*There really isn't a good way to make my current job work out. The department is underfunded, understaffed, and overworked in an inappropriate facility with inappropriate furniture. Just ask the short people who have to get files out of the top cabinet drawers. We'd all love for our offices to be the experimental model for universal design. We'd also love to win the MegaMillion Jackpot.

I could have done without that

Monday night was a hell night at work, the sort that leaves me knowing I will be in deep pain the next day. And when I awoke Tuesday to the sound of my cell phone alarm going off, reached over to grab it and then didn't feel it despite looking straight at my hand laying on top of the darn thing, I knew it was going to be a long day. A long day in which the "highlight" would be a nerve conductivity study on my legs and lower back. Yippee! What could be more fun? Maybe a hair dryer in my bathwater? Oh well. While I didn't expect anything useful to come from this study, it seems a necessary step since my doctors insist that joint problems can't possibly explain my pain and dysfunction. These are, of course, people who note that I am "unusually limber" and then don't want to hear it when I try to talk about family history of being unusually limber. (Any doctors who might read this: When your patient tells you what they consider to be an important part of their medical history, even if it doesn't seem important to you, that would be a good time for you to shut up the train of thought in your head and open your mind to maybe something useful being shared).

It is a good thing I had several hours to get from my bed to the doctor's office, because I needed every minute. I had hoped to stop at the hobby store and buy a sketch pad and some pencils, but being hardly able to move kind of ate into my time. As I finally threw myself into the driver's seat of my car, I noted that my left foot was buzzing. Fifteen minutes later, it had gone numb. Hey, why should my hand have all the fun?

I got to the medical complex, parked in the closest available handicap spot, and wondered if I would be able to make it in. Starting up the ramp to the sidewalk, it looked like the answer would be "no" because I didn't have enough momentum to force my left leg to swing forward. A woman maybe 20 years my senior was sitting in the vehicle next to mine, window down, watching me. "I'm stuck," I said as I manuevered a few steps from the ramp, "...try again." She laughed, "I have those days," the way only someone else who has been defeated by an ADA compliant ramp can laugh. With her moral support, I got up to the sidewalk and limped the 20 feet into the building.

The staff were waiting for me, which was great. I wouldn't have to fill anything out or even sign in. But then I was asked for my co-pay, which meant balancing to open my purse and dig out my wallet. I could feel my hip giving way and did what I have come to regard as the safest thing to do. I fell. No sense in fighting gravity. If I let myself fall, at least I can control the direction I fall. But it is damned embarrassing to fall in public. I fall in private nearly everyday, and just drag myself up. In public, I am a spectacle. Half a dozen hands reached out to lift me up. I chose the uninjured arm of a sturdy-looking man there with a hand fracture. It makes it easier to decline everyone else's help if I can pick the person least likely to fall on top of me. 

I wasn't hurt, but I was shaken and exhausted from the effort of having to get up right away instead of being able to lie there a bit. I wasn't convinced at all that this was the last fall of the day, and I felt flustered for being the center of attention. I tried to read for the few minutes it took to be called to the exam room. As usual, the assistant started walking too fast. (Note to medical aides: If the person you are escorting has a cane, walk slowly. Stop to see if we can keep up.) In fairness, she did realize what she was doing before the door shut on me. That doesn't always happen. And then she was careful after that. The 10 feet to the exam room pretty much took out the rest of my energy reserves.

And then, the electrician showed up. I mean, neurologist. I'll try to talk about that tomorrow.

Doctoring time again

A few months back, I switched GPs, since I had moved and my former doctor was now 15 miles in the wrong direction. The new doctor is one of those who aggressively monitors cholesterol and weight and blood pressure and whatnot that I'm not really all that concerned about, since none of that has killed anyone in my family. Still, new doctor's obsession with my cholesterol may be a good thing.  I told him that it is my leg pain that is my priority. So now he is intent on helping me with that so that it will move down my priority list and he has a shot at convincing me to use statins, which I promised I would consider if he could tell me what's going on with the leg.

I've had mobility problems with my left leg since childhood, but they came and went and, when I was young, no one ever noticed unless I ended up flat on my face. And then it was chalked up to me being clumsy. And it never fully cooperated when I was bike riding; in a way that's hard to describe, my efforts to push through it always dissipated in the hip. I certainly never drew attention to it, since I was already sickly and strange and didn't need to add to my reputation as being weird by asking what other people do when their leg suddenly stops working.  Anyway, over the past decade, I've used canes, a walker, and the occasional scooter or wheelchair to get me through the increasing times of my leg's unreliability. I've sought before to find out why it is getting worse, why it is constantly in pain, and if there is something I ought to be doing to arrest this decline. So, I go through this cycle of extensive, irritating tests that reveal nothing, with my questions about whether my hypermobility is causing it summarily dismissed.  

New doctor has sent me to an orthopedist, which I was hopeful about because the previous doctor sent me to a neurologist. Repeatedly.  And that was a deadend. Well, it was multiple deadends, but I suppose they had to rule out lesions. So, off to the orthopedist last week. And what does he decide? That I need to see a neurologist. Arrrrgh!

I have a nerve conduction study scheduled for Tuesday, and had a new MRI last week. Why, why, why? Why are they so convinced it's a nerve problem? If it's a nerve problem, why don't they think it has to do with the hypermobility? Every single one of them notices it, but then says it couldn't be the problem. Why not? Every joint in that leg slides around like a badly loaded stack of boards in a pick-up truck going down a dirt road. OK, yes, I just don't want to do the conduction study, because I've had one before, and they rank right up there with elective tasering on my list of things not to do.

Oh, well. Maybe something will be decided. And then what? My daughter asked me that, and I really don't know. It isn't like I expect that whatever is wrong can be fixed. But I would like to slow down the decline, since I feel more and more divorced from that leg to the point that we're barely on speaking terms anymore. And I realize I have to do something, because my main strategy of just ignoring it until I can't take the pain anymore is deterring me from doing things that I need to do on a daily basis.

In other news, I bought a slightly used mobility scooter for my daughter and I to share on outings. It breaks down into small enough pieces that I can pick them up and fit them into the back of my subcompact. I need to practice with putting it in and taking it out, and putting it together. I suppose I should get to it.

April Blog Carnival

The summer blockbuster season is just around the corner. And if summer be nigh, can action heroes be far? Nay! For here, on this very post, you find those who have heeded the call, answering my plea for help. Their hearts are pure, their aims are noble. They are the Action Heroes of the April Disability Blog Carnival!

I hadn't really planned to have any theme, and sort of pulled this one out of thin air at the last moment. It was the logical choice, I think. I remember, oh, back in those days of childhood, when I didn't notice the bad animation in cartoons, how I came to love my first comic book super hero, The Mighty Thor. It wasn't for his flowing locks or his bulging biceps. No, it was because he preferred his secret identity as lame Dr. Donald Blake to being the son of Odin.

I still enjoy the fictional heroes who not only make peace with their weaknesses, but actually enjoy them. I also like the ones who aren't going to let a little thing like repeated brain injury and medical quackery stop them in their quest to destroy the bad guys. Oh, Condor Joe, you are my hero!

Not everyone is as on board the hero train as I am, though, to me, an action hero is a regular person with the boring parts removed. And usually a silly costume.

Ettina presents an alternative to 'action heroes' in Willpower is Not Enough posted at Abnormaldiversity.  

And here's the sort of hero I most respect, from Life at Full Tilt, Action Heroes: My View. 

"I just want to share a moment of absolute freedom," writes Kateryna Fury. "I haven't figured out how to dance in my wheelchair, since it is broken and resists working at all, but found another way." What a lovely post to be found at Textual Fury, describing the feeling of Dancing with Limited Mobility. Yes, Kateryna is a regular Action Girl, one of my favorite heroes.

And here's another Action Girl. Etha of A Wheelchair View shares her passion for photography by explaining the benefits of a VR Lens for the Wheelchair Photographer.

What is it about the sea that makes amputation the de rigeur disability of the ocean-going hero? Whether real life hero Admiral Lord Nelson

or The Man Who Can Talk to Fish, Aquaman,

a missing hand immediately telegraphs derring-do. Or piracy. And you might think that indicates evil, but it actually represents one of the positive aspects about the pirates who have fed popular imagination. When someone was injured, they were given a disability stipend and kept on crew if at all possible. Skilled seamen were treasured, and willingness to sacrifice life and limb depended on the sort of group cohesion that comes with knowing that you aren't considered expendable.

I think Aquaman and Nelson would both find the arm and leg prosthetics in the making posted at A Repository for Bottled Monsters quite interesting (this Flickrstream link takes you to see the pictures).  Neither the real person nor the fictional one was big on hiding the missing limb. Nelson went with an empty sleeve, while Aquaman sports a harpoon. What would they think of the mid-20th century attempt to blend function with disguise?

Even better, Mindy at Fake Arm 101 has some ideas about identity as an amputee. In I am not Arm Girl, she explores both other people's reaction to her visible difference, and her own reactions to the gaze and questions of strangers.

The heroic team is a staple of action hero stories. The members of the team are not uniform, and as individuals often have some glaring weakness. But together, they draw strength from each other. 

What else does that? Oh, yeah. Families. With team leaders, Mom and Dad. 

Erin presents 7 Things Parents Should Know Prior to Going to an IEP Meeting posted at School Psychologist Blog Files.

But then there are the things that happen after the IEP meeting, the things that constantly shake the confidence of the parent. Bug's Mom tells about School, Recess, PE, and my breakdown.

I think just about any parent who has a child with a disability can relate to Rickismom's Parenting a Child with Down syndrome or Other Special Needs – a Declaration of Rights posted at Beneath the Wings.

Jordan's mom has a thing or two to say about the attitudes of others toward her son, in It's Not Contagious, posted at River of Jordan.

Bad Cripple, William Peace, says that An Ancient Skull Makes Me Think about the history of human disability, family, and community.

Of course, not all communities, or even families, are supportive, much less heroic. Samedifference1 asks What Happens When Online Support Groups Are NOT Supportive? at Same Difference.

And crafty River Wolfe wonders about the tendency to dehumanize "The Blind Guy" on American Idol, at polymer-clay-art.com.

Many disability bloggers spoke up in the wake of Obama's Leno gaffe, as the President went from Superman to Captain Hammer in the space of a single sentence.

 

Michael Berube places the incident in a larger cultural context, Special ?special? edition posted at Crooked Timber.

In Get Over it: But What are We Getting Over?, William Peace is chagrined that Obama's foot-in-mouth hasn't led to more in-depth national discussion of disability stereotypes

Laura at Touched By an Alien: Life as I Know It explains why she found Obama's comment inoffensive in No Offense Taken. Perhaps one reason that remarks like Obama's continue to be made despite the efforts of a couple or three generations of activists is the uneven pace of change in education. Laura also talks about that in An Incomplete Solution.

Wheelchair Dancer, in How We Talk About Each Other, discusses disability language use within the disability community. Changing the way we talk about ourselves is important to changing how others talk about us, isn't it?

One trend I like in action heroes is that there are more of them who are, let's say, socially awkward. That's last year's Kamen Rider, Kiva, who was extremely shy  and reclusive. But he gets more outgoing. Then relapses. Then outgoing. Then relapses. Then got outgoing. Then relapses. Then extremely assertive. It was almost realistic. Well, for a show where people regularly henshin.

The Queen Bee talks about The Very Model of Social Disability in Andrea's Buzzing About.

What the Heck is Prosopagnosia posted at BayDisability, will tell you more about living with face blindness.

Dark Angel brings us into the Twilight Garden with Off the Fence and On the Spectrum. Also, take a look at her post, I Have a Dream. 

Elisia Ashkenazy, who has her own blog at Aspitude, writes about Blasting Stereotypes in Autistic Females posted at Autism-Change.org.

One recurring motif for super-powered action heroes is invisibility. However, being invisible isn't all it's cracked up to be, as these bloggers can attest.

Dave Hingsburger discovered that he is invisible in An Elephant Disappears posted at Chewing The Fat.

Penny Rdr talks about why she had to stop being invisible in Coming Out of the Disability Closet posted at A Penny for Your Thoughts.

Think no one is ever invisible to you? Test your when you take the Quiz: Representations of Disabled Bodies in Logos at Hoyden About Town. 

Need a hint? Read Astrid's The Real Meaning of 24-Hour Care posted at Astrid's Journal.

What would an action hero do with all the spare time if it weren't for the dastardly villains that show up? I admit, sometimes I like the villain more than the hero.

The Goldfish tells us How to Be a Disabled Villain.

If you want to be a real villain, and get away with it, see how Roberts Bartholow did it in The Rafferty Experiment posted at Providentia. As Penny Richards comments, "Not only did this horrible thing happen, but the perpetrator published the details and was never punished for his act. Let's remember Mary Rafferty and the many others like her." Well, I guess he didn't completely get away with it. There was some tut-tutting.

To sleep, perchance to dream--even necessary for white knights and carnival hosts. Thus I leave you with two more entries.

Fatigue and the dream of finally being rested is Cheryl's theme in I'm Tired posted at Finding My Way: Journey of an Uppity Intellectual Activist Crip.

And in Tiredsville Donimo lets us all know that we can heroically meet any challenge if we just imbibe the right soft drink. Well, any challenge except for kryponite-laced carpet. That's even more diabolical than the Spam regularly featured at Chronic Holiday.

Thanks to everyone who participated, willingly or not, and to all who go visit these heroic blogger's posts. Leave them a comment!

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Of course, there are submissionsI forgot, and typos I have made. I'll try to repair any mistakes; just let me know. And if you forgot that there was something you wanted to submit, please post in the comments. Thanks, everyone.

 

Blog Carnival--So you want a topic?

The Disability Blog Carnival is coming up, and will be hosted right here April 9. I didn't set a topic because I tend to stress out if given a topic, but others have indicated they'd like one. I aim to please, so here is the topic: Action Heroes.

Interpret it broadly or narrowly. Or ignore it altogether, if you are like me and freak out when given a narrow parameter.

You can submit a blog post either by leaving a comment here, or by clicking into the Disability Blog Carnival thingie icon whatzit in the lower lefthand column of this site.

By the way, if you submit a blog post, you will already be an Action Hero.