Good news in shoes?

One of the last things I did in 2009 was go, yet again, on a quest for decent orthopedic shoes. This time, I even remembered to bring my prescription! Yay! When you know from the outset that your fugly shoes and insoles are going to cost you in the neighborhood of $200, it is nice to know at least they won’t be taxed.

The ones I bought back in August were already breaking down from the stress of my gait and stance and being worn constantly everyday. And shoes that are breaking down don’t do much to prevent pain or keep me from falling over. And if the shoes aren’t preventing pain and keeping me upright, then tell me again why I am wearing orthopedic shoes with my dresses? Yes, time for new visually unappealing footwear.

I went to a different orthopedic shop this time, that carries slightly different stock in both shoes and in-soles. So, this time, I ended up with a pair of Drew Boas and a whole new in-sole build. The Boas are still not what one would call appropriate for dresses, but I actually like their look. They are black with silver highlights and glow-in-the-dark white piping. (Just like the one on this page about them.) And they don’t have to be tied, which is an unexpected good feature. Instead, there’s a knob on the back that twists to tighten the lacing. Since my fingers are on the wanky side, my laces were always coming undone and posing a tripping hazard. I still have to tighten these throughout the day, but the laces can only get a bit loose, not flop around. And I just have to tug on the knob to loosen the laces up enough to take the shoes off, so removing them isn’t the chore it often is if I have ties that I’ve managed to somehow get to stay put.

OK, that’s the shoe part. The really exciting part is the insole. They had me try Cluffy Wedges to prevent my big toes from hyperextending and help with the pronation. And they work! I was really hesitant to say anything to y’all at first for fear that the good effects were temporary and that my sloppy feet would just find a new way to fail. And maybe they still will. Who knows? My feet have mysterious Fail powers. But these past two weeks, it’s been amazing. Dear hearts, I actually have been able to take the stairs because my knees and hips have fallen into alignment. I had–get this!–muscle pain in my thighs and back instead of joint pain from the waist down! To me, this is sort of the toe version of Silver Ring Splints. Yes, I still have to have significant arch support and a lift for my left leg, and I still have to wear orthopedic–er, “comfort”–shoes, but it is a big deal to be able to actually stand in the checkout line at the grocery store for as long as it takes instead of having to abandon the cart and try shopping again some other time.

And I’m also happy with Total Relief Footwear, for not only figuring out a good system for me but also being understanding in finding me something that I don’t find depressing to wear. They were worth the extra driving distance.

a bad day

I feel miserable. I have cried from the pain.

And now I learn that my niece has overdosed. This has just happened. My heart breaks. I don’t know how she is yet.

Update: It looks like they got to my niece in time. She has a hospital stay in front of her, and we all have some drama to come, but I am grateful that she is still with us. She is a beautiful, sweet girl. I hope she can learn to be a strong woman.

On pain and piety

Frida wrote a thought-provoking post on the significance of crucifixion in regards to understanding pain.

Speaking as an atheist, I don’t really know of any other atheists who mock crucifixion. “The” crucifixion, maybe, but that is because the one single event is teased out of the tens of thousands and held up as something special, while all the others who died horrible deaths, alone and in pain, bodies disposed of like refuse–nothing and nobody so who cares? But taking Jesus as a representative case–as Frida does–rather than a special case is a healthy approach, I think. It acknowledges all the others, elevates the worth of all the other individuals who are largely nameless, recognizes the shock against humanity inherent in torture and murder. And in that way, the example is edifying.

The trouble with pain is that it can’t be seen by others. People who are comfortable like to flatter themselves that they have somehow done something to deserve their comfort, that those who experience misfortune are maybe pitiable but still deserving of their hardship. And I wonder if, in this age when human sacrifice and mass execution is no longer in vogue, if the refusal to honor the pain of others, to respect and allow the alleviation of pain, isn’t some sort of vestige of the past, a sacrifice that pain sufferers are supposed to nobly endure for the sake of the larger community? I remember reading a short story years ago in which a society had developed without any want, deprivation or pain–except for one child, who was kept locked away and tormented, whose suffering was considered essential to the well-being of the rest of the society. I think there is an extent to which poverty, pain, and disability treated that same way now, so to the extent that a lot of people allow themselves to think about those problems, they are seen as sacrifices. And in that way, the usual story of Jesus is again reflected, making a widespread social and political problem that could be resolved with human will into disparate special acts of sacrifice that should not be tampered with and that bear no relation to each other. After all, the lesson of the crucifixion as I was taught it as a church-going child included stress that Jesus wasn’t like those he was crucified with. Those others, they deserved it, but Jesus was pure. I reject that. No one deserves pain.

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.

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.

In which I finally make what is probably an obvious connection

The past several days have been absolutely miserable. There was a joint in my body that wasn’t complaining, and quite loudly, too. And I was nauseous. I was inflamed. You’d think the nausea would have clued me in, but I am stubbornly dense. Anyway, pain. Of the beaten to a pulp by giants and then rolled over by heavy machinery that won’t get off me sort. I only have Darvocet for pain relief, because this bad of pain this much all over isn’t an everyday thing, for which I am thankful. And even really bad pain can be ignored to an extent if I can stay distracted. Being distracted, though, is impossible when one wants to sleep.

Monday night, I finally realized that my head was also hurting, that someone was coming along every few moments and wailing on the right side of my skull, sending my eye shooting out the socket. Well, it felt that way. And that is when it dawned on me that maybe I ought to take a Zomig. It worked marvellously well. I actually fell asleep within an hour and slept through the night.

So. Hmmm. Now I’m thinking that my crapped out neck maybe leads to the migraines, and the migraines magnify every other distress in my body. It also helps that the pressure front that was bearing down finally broke into actual storm. However, since I can’t command the weather, I will instead follow up on this migraine-joint pain connection.

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.

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.

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?