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.