Me v. Plants

Plants win.

This past summer, I moved back into Austin to be near work. I was just so tired of losing two hours a day to driving and of all the associated expense.

I have lately been reminded, quite harshly, of why I was willing to commute an hour into and out of town for work rather than live near work. Austin is a sink for pollution and pollen. I have severe allergies. We are not a good combination.

At any rate, this past summer has been mild and moist, a perfect growing environment for nearly any plant. And what plant is most annoying come August? Ragweed. And it is everywhere, and worse than usual, and I feel hellish. I've been on steroids since Friday and can't say that I feel particularly better. I can't get the crap out of my lungs, and the medicines I'm on, while keeping me out of the hospital, add their own layer of lethargy, stupidity, and clumsiness to that so helpfully already provided by asthma. I do OK as long as I am semi-reclining in bed. But bills get paid by me getting out of bed and hauling my ass to work, so into work I must go even though I get exhausted just surfing the net.

And work? The air conditioner is broken. Lovely. Nothing to filter the air or remove a few ounces of water from it. Yesterday, I ended up begging to go home for a bit, just so I could rest enough to close up the office later. Since it was either that or me slowly crawling on hands and knees unable to summon the strength to get up, the boss agreed. Fact, people: Oxygen is vital to good health.

Enough whining. I have to get myself ready to go in again. Maybe the AC will be working.

Look, Ma, an update!

It was bound to happen. The past few weeks, I had been thinking how well I feel, how I was able to get all sorts of things accomplished and that my pain levels were completely manageable with hardly any narcotics at all. Oh, sure, there were other things. Asthma attack. Gluten contamination. Some minor narcolepsy-type events. But nothing all that serious. Thus, I planned a busy Easter weekend doing housework and getting paperwork taken care of.

Which means, of course, that first thing this morning, my right foot went out of place and all I can do is wait for it to reduce itself. As long as I stay completely off it, I'm fine. But as soon as I get up, I'm hurting. I can't do housework, can't cook, can't rummage through my files looking for the papers I need, because all that requires that I stand and walk and use my hands. And I can't stand and have free hands since I need them to hold onto the canes to keep the weight off my foot. Not even my fancy-schmancy shoes help.

Here's hoping tomorrow is better, because there is so much I need to do. I want to at least put my new plants in pots.

The end of the world is nigh

Yes, boys and girls, the unthinkable has happened, and we had actual snow that caused the people in suits to send us home early from work. Just a smattering of snow, you say? Aha! Spoken like someone who lives where there are enough sand trucks to get to all the bridges before the carnage mounts.

Frankly, I would have preferred to have been told not to come in at all, since driving in a mix of hail, sleet, and snow is not my idea of a fun time for all.

A friendly warning

If you get cinnamon shower gel as a gift, do not use it on your face. Or more personal areas.

In the Reception Room

I went to the doctor's today, just to get a new prescription for orthopedic shoes. It was cold and rainy, and I was glad to find parking and get inside without falling down. I signed in and took a seat.

Across from me, a pleasant woman maybe a decade older than me spoke in soft Tejano accents with a man near my age. Their level of ease with each other indicated they were family. The man was called in for his visit and after he left, the woman looked at me and smiled like she had something she just had to say.

"Are you here to see the doctor?"

"Yes, just to get a prescription."

"You are so lovely. You look very good."

Well! Well! Now, that's a good start to anyone's day!

A bit embarrassed, I thanked her and asked how her Christmas had been. "Oh, very nice." She was visiting her niece, she told me. I asked where she had come in from. Laredo. I said I hoped she'd flown, because it is too long a drive.

"And how was your Christmas?" she asked, turning the subject back to me.

"Good. I spent it with my daughter and son-in-law."

A moment's pause.

"Are you a widow?"

I suppose I looked confused, so she repeated herself, and I realized I just hadn't accounted for her accent. A widow.

"No, just divorced for many years. Are you widowed, then?"

Yes, she told me, eight years now. Her eyes focused on an inner place of her heart.

"It was a freak accident, the day before Thanksgiving. My husband was diabetic."

"A car accident?" I was thinking of the diabetics I have known who have misjudged their sugar level and had serious, though fortunately, not fatal, accidents.

"No. We were at home. I was busy in another part of the house. He was painting the bathroom. Somehow, he fell. He must have hit his head, and he cut himself badly. By the time I came to check on him, he had bled to death."

She smiled. "I get through the days because I know he waits for me. I look forward to when we are together again."

Her family member came out and sat down, apparently needing to wait for his shot to take effect and preferring the drafty reception room and the company of his aunt to the sterility of the examination room.

"Until then, I must live everyday."

"Because that's what he would want for you, to live fully?"

"Yes." She looked at the man beside her, and smiled. I'd say she beamed with love, but that would give the impression that she wasn't beaming with love before. You could tell, from her despairing heart, she pours her love into those around her.

You know what? She was so lovely.

Xmas: survived!

It isn't that I hate Xmas. I don't have any negative feelings about it. I just don't love it, not the way that the incessant carols and advertising and build-up since before Halloween insist that I should. I enjoy New Year's Day much more, with its simple meal and quiet contemplation. And the week preceding, when I put away all the claptrap of Xmas and try to get out of the way any business holding over from this current year so that I can start freshly on the 1st.

But I did have a lovely Xmas. I got an unanticipated phone call from my brother, who merely wanted to chat and ask when I would come to see him. And I spent the day with my daughter and son-in-law, in their underheated, drafty abode, warmed by the fire of my silly girl's love for Xmas. As much as I am indifferent to the day, she is downright bouncing off the wall with excitement for. But, then, she's like that with everything, and it is one of the many endearing traits she has. I came away with tons of gluten-free cookies, all home-baked, and what feels like a literal ton of Japanese language learning magazines. The cookies are becoming ever lighter, but the magazines are still in my car, awaiting the assistance of someone who can not only pick them up but do so without collapsing immediately. So, maybe tonight, then, if the son-in-law comes by.

To everyone, whether your Xmas was good, bad, or indifferent, may the last week of 2009 be the perfect preface for the new year to come.

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.

Derm test results

The dermatologist's office called yesterday with the results, and, sure enough, I have a basal cell carcinoma. I'll get it removed Monday morning, then go to work. I hope there is something better to do that just put vaseline on the wound, because that is what he is having me do for the wound from the biopsy, and, man, I am getting sick of my shirt sticking to the oozy scab.

I'm not worried about the surgery itself. It should be fast and hopefully completely remove the offending skin. I've had a basal cell carcinoma in the same spot before, but it was treated with topical chemicals rather than just getting rid of the damned thing.

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.

and the ortho says....

Frozen shoulder. He didn't think the tear was significant.

I don't know. Maybe? He didn't seem convinced himself. He kept asking me if my shoulder was stiff, and I kept telling him I couldn't move it through it's full range. That's different from stiff, right? Stiff is where you move slowly, but after a while, it isn't so bad. I wish doctors would use the same language the rest of us use. It would make things so much easier.

And he doesn't seem to understand the connection between shoulder problems and hand problems. Or he doesn't talk as if he understands.

Anyways, he prescribed PT. I'm willing to try just about anything, but I am dubious since he decided against any specific instructions to the therapist, on account of him being not so sure himself. Well, maybe I'll be pleasantly surprised with an unusually good therapist.

very slight update

So, apparently I have a torn tendon. I don't have an appointment yet with the ortho, but it will be soon. I hope something good can be done, because my hand keeps going out of place now, too. Not that it takes much to make that happen, but still, not having it lock up on top of everything else would be nice.

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.

My precioussssssss is returned!

Oh, laptop, darling, darling laptop! Don't ever leave me again!

The past week or so has been eventful, and the next few weeks also promise (threaten?) more of the same. So, I should blog about that. But not right now. Right now, I should get back to work. But this weekend, I'll be sure to catch you all up on my exciting life.

Learning Japanese

I started attempting Japanese this summer. It's been a long-standing whim of mine to learn a non-Europe writing system, and there is plenty of available Japanese text available, so I decided, why not? Beth thinks I've made a lot of progress, even though I only can recognize the kana and a couple dozen kanji.

The kana are easy--just sounds associated with symbols. They all look alike at first, and I still struggle with katakana shi and tsu, so and n, since the difference in those pairs is so small. But I am getting better. Eventually, I hope to recognize them right off and not have to sound them out to make a word, just like I've been doing since childhood with Roman characters. The kanji are easy since I decided to put off associating sounds with them until later. They can be learned just associating concepts, regardless of native language. Writing them is tricky, though. My magic slate is getting a workout. (I really don't know why Deaf students aren't first taught a written language like this, one based on symbols. It would make more sense than teaching a phonetic language. If there is anyone Deaf who has some insight into this, please, tell me! Maybe I am missing something?)

I listen to Japanese music on the way to work and back, and watch a half hour or so of Japanese television shows in the evening, and spend a couple hours looking at Japanese blogs, running them through Google Translate and then picking out interesting looking sentences (the ones Google Translate especially botches :D ) for me to work on myself. Can I translate better than a machine? I have to make heavy use of an online dictionary, but I am getting there! And then, of course, I spend some time every night just working on learning kanji and refreshing the kana.

But, yanub, you ask, how do you find time to do all that? And is that really the best way to learn a language? Answer: Once I get home, I don't do much that doesn't involve sitting. This is interesting, and also doesn't strain my joints. And, you may have gathered, I tend to hyperfocus on things that interest me until I am completely bored of them. Is this the best way to learn a language? Oh, I don't know. It's a way. If I spent time worrying about the best way, then I'd never get around to trying any way.

Hmmm, I guess that's my summer report. Now I should go find some crayons and notebook paper to illustrate it. I wonder if my mom will put it on her fridge?

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?

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!

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.

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.