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[personal profile] elisem
So, most of you know that my partner Mike died in late 2006. One of the things -- one of the many things -- that was hard about losing Mike was that he was going to be with me when I went through the hip replacement surgery.

Mike was matter-of-fact about medical issues, and I was so grateful to him for that. When he was doing dialysis, he chose CAPD, which is done at home. I used to joke that it was the perfect mad scientist dialysis method, because he could do it in his own lair and control all the procedures. It suited him immensely. We'd sit there companionably, masked and adhering to all relevant medical protocols, playing computer games or reading with the IV stand and the bag hooked up to him. Just another cosy domestic evening, you know?

I sort of had that in my mind for getting through my own surgery and recovery. I didn't have any idea how difficult it would be just as surgery and aftermath. Nobody did, even though we knew it was non-standard. We expected three days in the hospital maximum, and then home. Instead, it was three or four days in the hospital (I don't actually know; I was too drugged up to tell) and two weeks inpatient at the attached facility for rehabilitation and physical therapy, and then home. And no Mike. Yes, Juan was wonderful. Yes, I had other excellent help. But I missed my Mike. He would have made medical jokes in all the right ways, and we would have shared it, like we shared all those things before.

Tonight I am finishing reading a brilliant, brilliant book by Susan Palwick. It'll be coming out in May, and it's called MENDING THE MOON. I'm almost at the end. A character has just said, "God, I miss [character name]. I'll be a complete mess when [other character name] dies, because then I'll be missing everybody at the same time. [...] I'd counted on [character name to get me through [....]" And I had to put the book down for a bit, because yeah. The aftermath of the hip surgery was hellish, but the really hard part was that there was no Mike there to talk about it with. And I felt awful and selfish, feeling that way. But it was true.

If there had been a Mike there, it would have been easier to stick up for myself, too. Grief made me small and scared and the kind of person who clutched on to everything and was afraid to lose it, even if that thing really wasn't right. Like people and connections with a couple of them. It made me clutch some things that were right, too, and the clutching wasn't very good for them either sometimes. Anyhow, I'm thinking about this stuff tonight as I read.

It's a really good book. A really, REALLY good book. I haven't told you about the complicated ways graphic novels and fanfiction are woven through the storyline, but they are. I've got a handful of pages to go, and I'm in that place where you get, when a book is so good and you're really hoping the author doesn't blow it at the ending.

[a little while later]

Nope. The author didn't blow it. This is not an easy book. And thank God for that. I don't think any book about grief could be easy. Not if it told the truth. I'm really glad I read this now. Shortly after Mike died, Patrick said, "What you should read right now is THE YEARS OF RICE AND SALT." So I went and got a copy, and he was right. It was the right book to read at the beginning of dealing with that grief. And somehow, this is the right book to read now, at whatever stage it is I am at.

I think the hip replacement surgery and the grief were a real one-two punch. (Though given how many people I cared about died in the two-year period of 2005 and 2006, it was more like an eleven-twelve punch, but anyhow.) I think I've been rebuilding since then. And I'm more grateful than I can say to the people who have been good companions on the journey. (I'm working on forgiving the few people who were lousy companions, too. I hope their own journeys are going better.)

If you wind up reading MENDING THE MOON, you'll get what I mean when I say that right now, I'm a Comrade. I can't wait for other people to read it so we can talk about it. I wish Mike could read it. But the wishes like that don't have sharp edges any more, and the grief isn't a whirlwind of nothingness any more. And I can finally walk most days without a cane, and it hurts less most days than it did before the surgery. And I have good people in my life, ones who aren't resentful when other people do kind things for me or when I ask for encouragement.

I don't have any clever summary, because, well, things aren't over. They go on.

It's just nice to feel good about that again.
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[personal profile] elisem
I last posted here in December 2009. A lot has happened since then.

It took a long time to improve enough to move from wheelchair to walker, and a long time to improve enough to move from walker to quad-cane. I still use the quad-cane now and then, a bit more than three years later. It took several years for the pain levels to abate enough so that I was only hurting as much as I had before the surgery.

Then I started having trouble with heterotopic ossification, which is random bone spurs forming. In my case, they formed at the surgery locations. They hurt. Even so, I don't hurt quite as much as before the surgery.

Would I have the surgery again, if I knew how it would result? I'm not sure. For the first three years afterwards, I would have answered "No!" in a heartbeat, though, which will tell you how the aftermath went.

One other loose end: that email someone sent me, about how I only posted to have people pity me? That was sent to me by my girlfriend at the time. I broke up with her shortly thereafter. It wasn't the only reason, but it's a good example.

If I had had any sense, I would have broken up with her before the surgery, but I was chicken. Having had so much grief in the previous few years, I couldn't bear to lose anything else, so I chickened out of breaking up, even when it was obvious that I should do so. In hindsight, that was very much the wrong choice, and I sure paid for it. Another person in that household whom I had counted as a friend has not contacted me since, despite repeated contacts from me, so I conclude at this point that that friendship is gone as well. And a third member did something unpleasant that I'll tell you in person if you want to know about, but I won't write here.

None of that stuff made recuperation any easier, to put it mildly. And I'm done putting a smiley face on it. It was crappy, and they acted like jerks.
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[personal profile] elisem
Walking more. Getting much steadier. Regaining strength. These things are all good.

Was directed by my physical therapist today to make an appointment with the surgeon, though, because she thinks I should get checked out for tendonitis in there, which might be a thing impeding my progress.

I can't believe it's coming up on six months since the surgery. It seems both shorter and longer time.

Also, I note that the "you just post to have people pity you" thing did indeed have an effect on my posting. Working on undoing the damage from that. What a nasty thing to say to somebody.
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[personal profile] elisem
Yesterday I walked up the stairs from the first floor to the third floor (attic). Used the handrails and not the cane. And used both feet, alternating, in the way that people with regular ol' standard-issue bodies walk up stairs.

Took the easier method going down, since down is harder for me, but hey, is progress. Exhausting progress, but progress.
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[personal profile] elisem
So I thought yesterday was good. And it was, it was; I had a major milestone, which is that I sat in a chair at nearly ninety degrees and suddenly realized that I was finally sitting evenly, balanced, in a way I have not been able to do since I was five years old. It wasn't pain-free, and I couldn't do it for all that long, and I hurt like heck and was very stiff when I got up, but I could feel what it was supposed to be like, and I can even imagine what it might be like to do it and not have it hurt.

This is major, major progress.

However, yesterday's goodness has been eclipsed by the even greater goodness of today.

OK, to understand today's goodness, you need to know that I've been practicing on two-inch and four-inch and six-inch risers, blocks of wood that are like steps of various height. I'eve even managed five steps up onto the eight-inch riser, which is supposedly a regular stairstep height. (Yeah, in old houses, I believe it.) Those five steps, the other day, took a lot of assistance via the hand railing, and I could hardly manage two steps down (I'm talking using the operated=on leg as the stability-and-strength leg). But! Today! FIVE STEPS DOWN from the eight-inch riser... and FIFTEEN STEPS UP. And for most of those fifteen steps up I did NOT use the handrailing for anything other than assurance I would not fall over.

Now, they weren't easy. Stairs are not simple for me yet. But I did 'em, and although I made some serious loud noises of effort, they were triumphant noises. (Doing them with major assistance from the handrailing is coming along nicely, but the no-railing thing is a huge benchmark for strength and function and balance.)

The other thing? Remember those motion restrictions called The Precautions, the ones so I wouldn't dislocate the new hip? Particularly the one that said "Don't bend more than ninety degrees at the hip"?

They ended yesterday. Today, very carefully and with expert supervision, I went to ninety-five degrees with a nice medium degree of effort.

Also, the complicated balance-and-walking exercises that look like dance steps went so completely wonderfully that I'm not even going to mention them except in passing, but you see what I mean about a red-letter day?

This thing? This thing is gonna work. (And to tell you a secret, I have been looking down at my hip affectionately and possessively every now and then, and saying, "My new hip. Mine! Mine mine mine mine mine!" and singing its praises. Which might have helped; you never know.)

WHEE!

And, of course, they gave me new and challenging exercises that ouch me in new and interesting ways, because such is ever the reward of PT, right? Right. It's how ya know you're making progress.

OK. Onward.

New Shoes!

Oct. 7th, 2009 05:13 pm
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[personal profile] elisem
I have my first pair of built-up-on-one-foot shoes, which I've been referring to as mountain goat shoes (for walking on those slopes, you know). They're a pair of modified Keens.

Got 'em, and had physical therapy half an hour later, and the physical therapist says my gait has improved markedly with the shoes on.

YAAAAYYYYY!

*does the happydance in my head, and looks forward to doing it using my feet someday soon*
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Went upstairs to the second floor... without my cane for the first time.

Coming back downstairs without the cane is harder, but I did it. (Thank goodness for a banister of sturdiness.)
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One of the things about doing physical therapy work is that sometimes you find the limits by bumping right up against them, and sometimes you find them by going over.

I think I overdid the leg press machine today. But I'm not very sorry, even though I am considerably more ouchful than I might otherwise be. And I'm definitely not daunted.

Continued to get encouraging feedback on the walking without the cane. Sounds like I'm getting better at keeping my knee turned out, which is part of what we're working on. The most encouraging thing? Apparently I was doing very well even when not paying attention to it. I'm guessing that the work is paying off, you know?

And! I hsven't used the cane around the house for 24 whole hours. Which is a huge good thing, as far as I'm concerned, as a marker of progress. (I'll use it if I need it now. But still, progress.)
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[personal profile] elisem
I was just thinking that I should probably check in here, and tell folks that I have been making progress walking without the cane (yay!), and that I have been getting out of the house a little more (yay!), and definitely gaining more strength in my muscles in the operated-on leg. And while I was thinking this, a piece of email came in saying, in part, that the writer believes I have been

"... fighting to be more special because your injury was so different, laying your problems out on lj for everyone to pitty you."

.... buh?

So instead of talking about my current special snowflake recuperation status tonight, I'll just mention that email.
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[personal profile] elisem
It was suddenly brought home to me, while I was reading elsewhere online, that there is one more major factor making this recuperation more challenging/slow/painful than the average person might expect:

I am not allowed to take any anti-inflammatories. (Crohn's disease precludes them.)

This doesn't just mean I have more pain. It means that I have more pain, and that tissues are not healing as fast as they otherwise would, because they are inflamed and swollen. (Ice, yes, I know. Workin' on it.) It means that every PT session leaves me ouchy with no recourse to the comfortable routine of people who can just take some whatever-it-is and feel things ease.

This is a big realization. I figured I'd mention it here.
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[personal profile] elisem
forgot to mention this.

Uncomfortable To Say The Least, Earlier:

the first time i used the leg press machine, it was set at the farthest out (least leg-bending) setting, and i still had a really nasty panic attack when i got on the machine and started doing any leg-bending. that setting was d.

Progress:

i asked to pause but not to stop. (i have a strong willingness to continue if i can first have a little break to get myself reassembled. i hate stopping and walking away from it unless i really need to. so i have to remind the PT people i want a pause, not to quit for the day) i was able to let the panic ebb a little, enough to do some work there at setting d.

Today's huge progress:

today's setting was c. that's huge. and on top of that, i managed to let it press in almost to the limit on that setting.

b, i got my sights on you. so there.
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[personal profile] elisem
Hard stuff:

still ow ow ow a lot

Progress:

not as bad as before


Frustrating stuff:

still behind the curve on being able to walk again

Progress:

did more than forty feet without the cane today in PT, have been using the cane only part-time around the house, and am cleared to walk (inside) without it as long as I don't get wobbly. strength DEFINITELY returning! woo! (still need to use walker outside the house though, especially since if the fibro kicks in and the arthritis gnaws at me, i sometimes need to sit, and having the little seat in the walker is Very Useful -- i thank the Juan for pushing me to get the one with the seat instead of the more basic model; he sees people using them on his bus commute, and advised me on which ones seemed to be the smooth-operating ones. haven't tried the bus yet, though. gonna achieve the five blocks to Dairy Queen first, i think. one milestone at a time.)


Frustrating stuff:

feel like i am missing everything and that the world has no need for me and doesn't even notice (yep, extreme bouts of self-pity; i deal with helplessness very poorly, alas)

Good stuff:

feeling tremendously creative just now. so much to do, and i mean that in a good way. plus some difficult stuff got resolved in a positive direction, so whew. and there are possible upcoming good things, about which more later.


progress yay!

I'm off The Precautions in three more weeks....
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[personal profile] elisem
So. Went out of the house again today, and not for PT. Went to the bank and the shoe store next to it. Such mightiness! Daniel drove, and we brought the walker and the quad-cane both.

Note to self: all your favorite long skirts get caught in the wheels of the walker. Wear other things.

Query to self: do I have other things?

(I like long skirts, because they are practical for work: if I drop a bead, it falls into the lap of the skirt and I don't have to scramble around looking for it. My skirt is my default bench pan.)

Went to shoe store. Much stuff on sale. Alas, the thing we needed was not there. I need a shoe that has soles the orthotist can build up on one of them, either by gluing onto the bottom, or by splitting the sole and putting a rise in there and then gluing the split part back on. The orthotist, whom I saw yesterday, told me Doc Martens don't work, what with the oil-based sole. Otherwise they'd be fine choices. What we found today is that there are very few leather-soled shoes around, and also that most shoes are silly or ugly or just plain dangerous, and not in a good way. Or boring.

However, I am not defeated. I plan to do a little net research to find the message boards where leg length discrepancy folks discuss which brands of shoes do indeed work for building up, and then I will find out who in town carries those shoes. So there. Mighty, I tell you.

And now I am going to collapse for a while, because ow. Serious ow. But with any luck I will revive in a while and try to upload the photographs for New Shinies. Yep, I've been working.
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[personal profile] elisem
A little while ago, with the help of my trusty walker and the companionship and assistance of the most excellent Juan, I went out the front door and down to the sidewalk, and then we walked down to the end of the block. When we got back, we walked to the other end of the block.

After all this, I am pretty tired, but it was really nice to be out in the world.

I could feel the unevenness caused by the (now increased) leg length discrepancy. As I told Juan, "feeling it" means it makes me hurt. I see the orthotist on Wednesday, so I should find out how soon I can have shoes that balance me out. That might help. I have hopes.

So. Much with the mightiness of walking. Also with the doing of the PT exercises.
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[personal profile] elisem
OK, yeah, you may have noticed the entries here have been a little sparse. I have this bad habit of not saying much about the hard parts. It's a lot easier... no, it's a lot safer to write the cheery happy optimistic stuff. So that's mostly what I've done, most of my life.

It's served me well, too, for the most part. But I'm at a different place in my life now. This road is a new road. I don't know who I'm going to be, now. There's so much I don't know: what my art will be like now, or even what my art may be, period. Who I am, what I like, what I'll no longer have time for, what I'll finally make time for.... All of that. I'm not sure what it will be, and I'm not sure exactly how to get there, but I do believe one thing: it starts by telling a whole-er truth.

So. It's been really hard. I'll tell you in more detail about it soon -- probably tomorrow -- but for now, I'll just say that it's September now, and I had the surgery on July 14, and here's where I am:

I walk with the quad cane in the house a lot, though I do use the walker when going out to physical therapy.

I sit in the wheelchair to work, or when I sit up to eat (if I get out of bed to eat, and thank goodness for the bed that sits up for me!), and it hurts a lot, because four and a half decades of sitting off-kilter due to the damage means my whole body needs to realign in order to accommodate the new architecture. Accommodation seems to involve a great deal of pain. And I can't sit up for very long at a time, though I need to keep doing it. Once I'm doing it, though, I need to remember to move at intervals -- which is difficult, especially if I am making art, because all my pain management skills work against being interrupted by it. I feel like I'm having to learn everything all over again -- no, like I am having to UNlearn everything, and THEN start over again. It's hard work. Sometimes I despair. I don't do helpless well. (I hear Notkin laughing over there; she knows this bigtime. I am grateful for the late-night phone calls, more than I can say.)

I've only been out of the house once for something that wasn't a doctor's appointment or physical therapy, and it was on the way back from physical therapy. (To be fair, that's not entirely the hip -- but the combination of the gut trouble and the restrictions on the hip mean that I have a significant chance of being faced with a sudden and dire need for finding a rest room, only to realize that sitting down would dislocate my hip, since every public toilet I've ever seen is below the height guidelines in The Restrictions. Synergy between ailments is not usually fun, but this is particularly limiting.)

I hurt all the time. I hurt more than I did before the operation.

Even when I hurt then, I could walk a fair amount. I can't yet. Yes, I know, it will come, and I intend it to come. But this is how it is right now, and right now is hard for me. You see now why I was so adamant about not wanting to hear all those perky stories about people who had a hip replacement and were up skiing seven hours later, or whatever? Different situations. If they had had four decades of adaptation to damage and THEN got a hip replacement, that's different -- or a number of other circumstances, and I am grateful for the people I've met who do know those circumstances from the inside, because they don't inundate me with cheerful pep talks and they don't make me feel like a failure for not meeting the timeline for a different condition.

And no, I am not to the point where I am glad I did it. I can imagine someday getting there, but right now, it's just sort of a hazy maybe.

There. That's enough to begin with -- possibly more than enough, for some people. But remember that bit I said above about deciding what I no longer have time for? Yeah, file "people who tell me I'm doing recuperation wrong" under that.

Because you know what? I'm doing it how I do it, and it takes as long as it takes. And my physical therapists, who are trained in this stuff and who are aware of what I'm up against, are telling me that I am doing good work and that indeed, I am doing better than they expected.

I'm fierce, I am. And I don't give up. But I've been having some hard times, and I guess it's time I started telling the truth about that... because as some friends pointed out to me a while back on another issue, if I don't tell you guys, it makes it harder for you guys to be in it together with me, if that makes sense. I believe the exact phrase was, "If you don't tell us, it makes it harder for us to help. Don't rob us of that chance, thank you."

So.

I love you guys, you know that? You helpy ones, I mean. You know what I mean. Is a big mutual helpyness society thing, when it works.

OK, enough for now. Gonna post this before the Internal Censor gets it.
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[personal profile] elisem
So I went into today to see Dr. Cheng for the followup appointment for the hip replacement. Tomorrow it will have been five weeks since the surgery. They've been five very difficult weeks for me, but I am seeing progress, and I am glad for every milestone reached. Right now, my motto is "It takes as long as it takes," and my affirmation is an oldie but goodie, "I'm right where I should be -- and right on time, too!" which never fails to make me laugh a little, because it pokes me right where I need poking sometimes.

Anyhow, that's not what I logged on to tell you about. I logged on to say this:

The X-rays look very good, I am healing nicely, and Dr. Cheng says that I am off The Precautions at three months after the surgery. That's October 14th... which means, he told me, that I am cleared to travel to San Jose for World Fantasy Convention. (I told him about the award nomination and he offered congratulations on being nominated.) Don't know if I'll actually go, but it's a tremendously happy-making thing to know that I can go if I want to.

Whee!

Also, got referrals to outpatient PT for gait training (those are the magic words!) and to the orthotist for shoes that'll deal with the now-3/4 inch leg length discrepancy, had the remaining stitches/staples/etc removed, and was pronounced fit for the world and healing very well. Dr. Cheng wants to see me in a year.

WOO-HOO!

I'm not there yet, but I am definitely on the mend! (I know, I have been all along... but today is a red-letter day.)

Thank you all a million times for all your good thoughts and encouragements, for your understanding when I was grumpy or scared, and for all your listening and sharing and everything. Thank you for the little thoughts during the day that you never wrote down; I am convinced they help.

OK. I have celebrated by having a nice lime frozen fruit bar, and now I am going to rest some more, as the appointment was delayed by nearly an hour and I was out and up much more than expected, so I am kinda fried now. But a happy fried.
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[personal profile] elisem
Sonya and I decided that "The Precautions" would be a really good name for a band.

(The Precautions are things that people who have had hip replacement surgery need to follow. Here's one version and here's another.)
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[personal profile] elisem
A little less pain today. A little more sitting up. Progress, I think. Little by little, but hey, I'll take what I can get. (And I'll ask for more coaching on walking, because I'm still lurching and feeling like I've lost ground since being discharged from the transitional unit. Going from 2 PT sessions a day to one per week sucks rocks through a bad bendy straw, it does.)

There were some rather upsetting sharp pains during some of the PT exercises, at which point I backed off. I'll ask the PT person about them on Monday.

In nerve news, the numb areas of my leg are continuing to be the site of interesting sensations. Or, as I told Sonya, "They're running soundchecks on my nerves down there again." Mostly it's the boiling-water-tricking-down-the-leg sensation today. Maybe it'll switch back to cold water again.

Eh, well. Onward.
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[personal profile] elisem
As in, "it varies from patient to patient."

Especially when it's an answer to any of the following questions:

When might I be able to look forward to a general decrease in pain sufficient that I'm not taking HUGE HONKING PAIN MEDS THAT FREAK MY GP OUT AT THE VERY MENTION OF THEM?

When might I be able to stand upright on the operated leg and put my whole weight on it without cussing a blue streak?

When might I hope to be off The Precautions*?

When might I be able to walk more than fifty or sixty feet (using the walker, going slowly, paying great attention to every step) and not have it exhaust me and leave me shaking and sweaty and in a fit of the weeps half the time?

They say recuperation varies from patient to patient. Well, I'm sick of being on this edge of the bell curve, I can tell ya.

Eh. Complain, complain, complain. But there it is. Not that I'm going to let it stop me. But I'm a bit irked by the whole thing.



*I'll have to explain The Precautions later. They're rules for not putting the new hip out of joint, which would mean going back to surgery and starting the whole thing over from the begining. Getting off The Precautions would mean major progress in healing and strengthening the muscles and so forth.
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I have had my morose morning.

I hate that it feels like I'm losing ground on walking correctly, what with only one PT appointment this whole week at home. However, we're asking if we can get more, since I really do need the coaching on proper walk. I suspect what happened is that yet again, I've been put into the hopper of "the usual recuperation and PT path following hip replacement," and they don't realize I need extra help with getting this walking thing correct. ("No, really. The last time I walked normally, I was five years old. I don't remember how to do it. I've been walking with a messed-up hip joint for 43 years, compensating, and I really do need help learning to walk properly now.") I'll just have to keep insisting until they understand it, I guess.

The visiting nurse came at noon, and I talked to her a little about this stuff, and about the fact that OT hasn't phoned to set up an appointment yet, and she's put in a note to headquarters to see if they can poke OT and get them the heck out here. (I mean, I'll have been at home a whole week on Saturday. Isn't the point of OT to make sure that I can safely function with home and work tasks? I'd like to get that stuff taken care of so I can get on with things.)

Coumadin level was a little low, so walking is even more important (to prevent blood clots). Blood pressure a little high, but the high pain levels probably account for a bunch of that. (I want the pain to abate. I really really really do. In the meantime, pain meds help. I hate taking pain meds, but they do help.)

I did some walking with the walker. Got some stuff out of the refrigerator for lunch, which Daniel then fixed for me, as I needed to lie down again. But it was something. I also sat up for a while this morning in the wheelchair, and wheeled about the house some.

I am fierce. I want my walking to get better. I want expert PT coaching on how to bend my knees to prevent the lurching from side to side. I want improvement.

To that end, I'm doing my exercises as directed. The home PT guy crossed off three of the ones the transitional PT people had me doing, saying I wasn't ready for them yet. Not sure WTF is up with that, but OK. He said walking itself will do some of that. So. I gonna walk two laps around the inside of the house at least twice a day, cussing optional. And I gonna do my exercises. Cussing optional there, too. I do find that yelling or making noise does help, if only because it keeps me from holding my breath.

Anyhow, progress, I guess. At least I am fierce and not so morose this afternoon. Though I am told by reliable authorities that it's important to let the morose and the other emotional stuff out, too. (I just ask please, if I am in a morose mood or a fit of sadness or feeling discouraged, please know me and trust me enough to know that I am not giving up. I'm not the giving up kind, you know what I mean?)

Might be that I should make a post about the morose and sad stuff. It's a topic all its own, probably. Oh, and I should also tell you about my two new snail sculptures, which have brought much joy to snailsville here.

OK. Onward.
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