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.

Thankful

The past few weeks have been exhausting. Between a hellish pace at work and my joints, I have been beat. Too beat to even think about having something witty, useful, or at all worth reading to write. And not hardly the energy to read anyone else’s blogs or answer emails.

For Thanksgiving, hoping to contain the general family mayhem, I had everyone over, knowing that the lack of TV reception would have them all eating and leaving in short order. Yes, I am devious that way. It was tiring getting up early when I so needed to sleep in, but rewarding to see my vegetables being eaten, eat my mom’s turkey and ham, and celebrate a new step-nephew’s inclusion into the family. And then, today I slept. And slept. And slept. I think the muscle pain may finally be wearing down.

I saw the ortho Tuesday, told him I wasn’t going to do the PT or see the neurologist again because I think his diagnosis was wrong. And he agreed, encouraged me to essentially keep being bullheaded, and said we will just take things as they come. I’m thinking I may be past the defensive medicine stage with him, so that is good.

The wound on my back from the removal of the carcinoma seems to be healing OK. It has stopped oozing, and the skin around it, that had started to break out and blister from the bandages, has calmed down and is looking mostly normal. The scabs are sort of half on and half off, and still itchy, but at least I can lie down on my back now when I sleep. Another good thing.

Most importantly, I have the desire to research again. Finding the time to do it will be the trick, but my efforts at learning Japanese and my interests in pop-culture and disability issues are all sort of coming together at the moment. My money, time and employment issues are the same dragging forces as ever, but my interest is back. And maybe even some of you will want to know what I come up with, despite my lack of useful affiliation with any institution and absence of peer reviewed publication? Or maybe I’m just at a stage where I no longer care about those things, and will just do what I want.

Dermatologist comes complete with clue!

Wow!

I went this morning (well, now it’s yesterday morning) to a dermatologist to have my back checked since Carapace had thought she spotted some problematic moles.

Once the dermatologist began his check, he noticed my ring splints and asked me what they were for. I told him, “to keep my thumbs on.” Then I told him that my daughter has an official diagnosis of EDS, hypermobile. (My own official diagnosis is much more vague and scattered.) He’s touching and pulling on my skin, and says “I was going to ask you about that.” Then, “what other symptoms do you have?” I told him all my joints are generally lax and that some people say I have soft skin. And he said, “It is soft.” Then asked me some more questions about Carapace and other family members.

Now, you may wonder, why I am impressed with this. After all, I am pretty obviously symptomatic, right? And I always give a complete medical history, both personal and family. But doctors hear what they want to hear, see what they want to see, and will tell you to shut up if they don’t like you rocking their world with conditions they don’t feel adequate to treat. They’d rather send you for endless pointless testing in the hopes that it will lead to something they know about than believe the evidence in front of them. But this doctor was different, and for the first time in a long time, I feel like I can trust a doctor, and my confidence in my own ability to assess what is going on with me is better because of that.

So. That ortho? He can either pull his head out and pay attention to what I say, or I can see a different one who listens in the first place.

Eventful events are eventful

As promised, a long-delayed blog post!

These past couple of weeks seem to have been conspiring against me getting online again. But I found a place that actually fixes power jacks for cheap and without a bunch of caveats, so here I am again! Yay! The little beast is working better than it has in years, so I am hopeful of maybe now having it for some years to come yet.

It’s been frustrating not having the laptop since work has been so busy I haven’t been able to do much more than sometimes clean out my in-box of emails that didn’t absolutely need to be answered and mark everything in my RSS feed as “read”. If you said something that you were really hoping I in particular would read, and I haven’t responded, give me a holler. Sorry for the inconvenience.

At least, the laptop woes coincided with the weekend Carapace and I had planned to go to TRF. I have some pictures, and I will post a few later if all goes as planned. We camped, as usual. As is not usual, the weather was as close to perfect as it can get for a Texas autumn and Carapace managed to have not one single significant seizure! I, sadly, had my usual allergies keeping the entire campground awake (ha! That’ll teach those guys who put their tent right up against ours!) and, despite my efforts to plan, perimenopause played the hormone roulette wheel and came up red. Still, that did not negate the very important experience I had using a pair of hiking sticks instead of just my cane, or even pair of canes. With the hiking sticks, I escaped having notable leg and hip pain for the first time in years–and that despite my period! It had gotten to be so bad previously that I wasn’t even looking forward to going. So, I highly recommend getting yourself some if you are a cane-user and have started to miss out on events that require a lot of walking.

My niece is out of the woods as far as the overdose is concerned. She’s facing a long stint in psyc rehab, though. She prefers that to going home, I know, since the home environment is currently unstable due primarily to financial strains. There are other issues, too, but I don’t like talking out of school about other people’s personal lives. The one thing I will say is that, my family is in denial about how pervasive mental illness is in our family. It isn’t just one individual with a problem. Most of us are untreated, uncounseled, and our coping skills are ad hoc, to put it nicely. I really admire Glenn Close and her sister, Jessie, for their decision to speak out about mental illness in their family. I hope that it will encourage other families, including my my own, to take positive action and be more supportive of each other emotionally. (And, in case my family stumbles onto this and puts two and two together, I love you all. Just, wouldn’t it be nice to stop pretending and start dealing with reality instead?)

In more horrifying news, a coworker of mine has an aunt who is likely to not emerge from the coma that her husband put her into. It is a classic case of an abuser first isolating his victim, and then escalating the abuse. I am astounded that the husband is out on bond. How can this be? Why isn’t domestic abuse taken more seriously?

Oh, and finally, much less universally depressing but potentially more annoying for me personally, it looks like I have a torn rotator cuff. And that I am actually going to have to do something about it, what with not being able to use my left arm being a real nuisance, what with me being left-handed and the driver’s side door being on the left in the US. I don’t know if it will mean surgery and then PT, or just PT, but, either way, I have a feeling I am facing a lot of PT. And I hate PT. So, expect a lot of griping.

New shoes!

I had the afternoon off so I took advantage of the time to get myself to the orthopedic shoe store where I could get a pedorthist to help me find a new pair. After all, it has been a year since my last pair of shoes. This time, I had high hopes of at least getting something all one color.

I could tell that the pedorthists were skeptical that I needed any assistance from them. The senior one initially tried to get me to get help from one of the regular sales clerks, but I insisted it was pointless to look for shoes without specialized help because of my joint instability. When the junior, RC, came available, I explained again the general instability problem I have and showed the orthotics I had gotten along with the shoes last year, and mentioned that the pedorthist last year believed that my left leg had lost length. So, RC whipped out his trusty level and, sure enough, my left hip is sitting about 3/4 of an inch lower than my right. That’s worse than last year, and I knew right away might be why I have been having so much pain throughout my leg. (You know, I told this same information to my regular GP and my orthopedist, who both promptly ignored it and thought I should have an MRI. I really do hate doctors.)

RC went off in search of shoes for me, coming back with, of course, New Balance, and, this time, a box of Drew mary janes. Oh, joy! Mary janes! Is it even a possibility? And also, of course, new orthotics–arch supports and a heel lift. Because, no matter what else, the old ones always turn out to be Not the Right Thing. Ka-ching! Oh well. When you have floppy feet, you get used to paying for the bones to be on the outside.

We started with the New Balance, with had the virtue of being all black, a definite improvement over last year’s white and purple. And with the new orthotics, it was almost like walking normally. My heart sunk because I knew the Drews weren’t likely to be as good. And they weren’t. But they were almost as good! It was really tempting.

The drawback to the Drews was that they didn’t stop my left ankle from pronating. Which then led to my knee buckling. Which drags my hip and spine down, too. Oh, one big house of cards, that leg is! I don’t think RC had ever seen such instability, because he made a comment about me moving my knee around. I again pointed out to him that I all my joints are unstable, and that the only moving I was doing of my knee was trying to keep it from collapsing.

And that led to his suggestion that I need a build-up on the arch support. We discussed the shoes a bit more, because my vanity was pulling me toward the Drew. But I decided to get the NB. Sigh. They really are more supportive. If uglier. But the good part is that the build-up is on the orthotic, not the shoe, so if the opportunity presents itself to get the Drews (a second pair of shoes? for me? ones I could wear and stand in at nice events, not just sit? ooooh, I shouldn’t get so crazy greedy!), I can just switch out the orthotics.

So, $235 later, at least, my shoes are all black and not driving me to my knees. Worth every penny.

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?

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.

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.

Catching up

First off, go check out Charming BB’s really great Disability Blog Carnival. Go on. I’ll wait. But be sure to come back here. And be sure to leave me a link to your favorite post this month, because I host right here next month. It will mark my first time ever as a blog carnival host. I don’t have a theme I expect others to fit themselves into. I’ll see what comes up from the submissions I get. Help me out here, and send me your best stuff!

Second off. Er. Um. To continue. Er, no, to switch topics. Yes, that’s it. I went to Staple in Austin last weekend, and got a copy of Usagi Yojimbo, Book 1, “The Ronin,” signed and with a little sketch by Stan Sakai. Oh, so cool! And many other neat people also were there, such as Rod Espinosa and Chris Allen, who have both done historically oriented comics for Antarctic Press. I bought a signed copy of Allen’s Obama, the only Obama commemorative item I have spent money on. I also bought The Less Than Epic Adventures of TJ and Amal, which is a self-published book by E.K. Weaver. And I got a very nice sketch of Amal tossed in for the price! And also, I bought Phuni Comix, which is more of “Science and Religion”, which I bought last year and enjoyed. It’s probably a niche taste, but I find the silliness appealing.

And lastly, my right wrist separated Thursday night. Oh, it’s fine-ish now, but I’d like to know, why is it that I can never find my bandages and splints when I need them? What compels me to put them away? Why aren’t they laying out on my dresser along with my old teddy bear, single earrings, and crumpled receipts? I swear, I go through this every single time. Where can I put them that they won’t be in the way when I don’t need them, but also won’t be impossible to find when some part of me has decided to storm off in a hail of bitter recriminations and tears? What do you do about things like this? Where do you put your repair kit stuff that it can be fetched with whatever limb you have working at the moment?