short walk to nowhere

I had my second PT appointment today and actually pulled off walking on a treadmill. I suppose 5 minutes at 1.2 mph doesn't seem all that impressive to you, but to me it was a big deal just to get the balls to get on the stupid thing. I had this very clear image in my head of me putting one foot down on the conveyor belt and just completely flying off the back end of the machine.
Must be from growing up with too many cartoons or episodes of I Love Lucy or something.

shock value

If there are any other amputees out there reading this (and I know for a fact there is at least one--hi Sara!), I would love to know if someone can tell me what the &*%^ is going on here, and if anyone knows of a fix.

Four times over the past two weeks, I've been startled awake in the middle of the night by really bizarre pains in my residual limb. I wouldn't call them "phantom pains" because they aren't in the "invisible limb". They are actually within/on/through my stump (hate that word). Anyhow....I've never actually been electrocuted or tasered in my life, but I imagine that this is how it would feel. It's like I'm getting shocked, like a strong electric jolt, as if some kind of current is zapping through my leg.

Now a couple of weeks ago, I bought an electric blanket, and I actually thought that maybe it was the heat that was triggering the new pain. I also had some wild ideas about the electric current running through the blanket, even though that seems a little farfetched. But it can't be the blanket. I've been out of town the past few nights, staying in a hotel (with no electric blanket), and last night I was up for about two hours, getting shocked into exhaustion. Changing positions didn't seem to help much, nor did massage (which was soothing, but didn't keep it from reoccuring). Every time the jolting would stop, I'd settle myself down again, I'd just about doze off, and then I'd get zapped again. Each time it was like a full body jolt. By the morning most of my muscles ached from tensing up every time it happened and it felt as if I'd been holding my breath for hours. It was quite horrible and I don't even want to go to bed tonight for fear of it happening again.

SO. Has this happened to anyone? This is now almost 2 years post amputation, and I thought most of this monkey business stopped after awhile. I did I have milder forms of this shocking feeling happen right after the amputation, but it's been a really long time. Is it related to using the prosthesis, you think?? Maybe my nerve endings are just all jangley (is that a word?). I don't recall this happening last year when I was able to wear a prosthesis periodically, though.

And I guess the bigger question:
Does anyone have any idea what to do about it??

Would love to know......

let the rebirthing begin

So my last post was about Wednesday.
This post is about Thursday.
And it's Sunday.
(so I'm behind....what else is new)
------------------------------------------
Early Thursday morning I had my first Physical Therapy appointment for gait training (aka: now get yer ass up and walk damn it!).

TheMIG came with me, which I thought was so sweet and supportive...although it was later explained to me that he went because he wanted to actually SEE how it went, as opposed to HEAR about it, because he knew I'd leave things out if I was asked to describe the session. Well, phooey...I'm sticking with sweet and supportive. But he does have a good point. I don't think I could have described the look on my face when I actually took a few steps without any kind of assistive device (parallel bars, crutches, canes, etc).

I wore a prosthesis very sporadically Dec 04-Jun 05, but I was never able to take anything that looked like a real step without something to hold onto. In fact, I was even told that maybe walking with a cane was as good as it was going to get for me. I have a hard time buying that when I see that some amputees manage to compete in triathalons. I mean, I'm not asking for anything fancy here...I just want to walk. And if they can do a triathalon, surely I can walk without a frickin' cane.

The real issue here is that I've never trusted my prosthesis. And for good reason--the last prosthetist was never been able to make a socket that would actually consistently stay on my thigh. It would literally become so loose that it would spin me into a 45-degree pigeon toe or, as would happen on a couple of occasions, it would actually fall off! And these "fit issues"would happen when I was in, let's say, the very back of a Costco ..and there I'd be....painfully hobbling for a loooong time to get to a place where I could futz with it and try it again. If putting it back on again was even an option at that point, which sometimes was not.

Well, I think this new leg man has finally made me a socket that stays on. For starters, it's adjustable. It has a buckle on it that I can crank tight when it gets loose as my thigh does it's daily bizarre shrinking and swelling thing. The socket he made doesn't look nearly as clean lined, sexy, and elegant as the last one (the one that would fall off).....but it's going to have to be function over form this time. You have NO IDEA how badly I wish the elves left me a digital camera for the holidays. I would LOVE to show you a photo comparison of the old socket to the new. This new one stays on, yes, hooray!! But it looks like I made it myself playing with a glue gun and a first aid kit. I kid you not. It even has DUCT TAPE on it in places. No shit.

But it works. And it stays on. And I feel stable. And I actually took a few steps hands free that even looked like real steps, knee bending, no stumbling or hesitating, and only a very slight limp. But I only got a few of those good steps out, because on that note, let me say:
DAMN MAN! MY ASS IS OUT OF SHAPE!
I haven't used some of those muscles in a very very long time. I got tired more quickly than I expected.

The PT really recognized my trust issues and has me doing these very small, repetitive leg movements that from the outside probably look like nothing exciting is being learned...but the exercises are designed to help me understand what this leg can do, and what it cannot...and what I can do, and what I cannot. They are designed to get me trust the prosthesis.

Bottom line: I feel a bit more enthusiastic about putting in the hard work than I did on Wednesday. And THAT to me is worth it's weight in gold.

the death and rebirth of self-acceptance

I feel like I’m forced to jump (hop?) into an entry about dancing. And I don’t have the time to post another entry first that would give you context or a history of my dancing. And I’ve already told you that it's important for me to make sure you have context for some reason (one that I do not yet understand). But what I need to get out here feels important and big and necessary to do now before it is lost in some word.doc never to be found again.

So here we go... a dancing post, sans context:
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Wednesday night I met with a few members of the dance company I will be performing with in 2006. We were to be led in a night of dance, art and solstice ritual... the core material for the evening relating to the performance piece that is being created/choreographed, and ritual being part of the process guiding us to the performance.

Doffing our clothes and becoming naked, we each chose our own little space in the room. We relaxed onto the floor and were led to connect with a part of ourselves that is “dying” and then improvised movement from that place. Then we were led to come to stillness again and then connect with a part of ourselves that is “birthing”. And we danced from that place, as well. At some point we checked for poignant or repetitive movements from both dying and birthing, and we brought the movements together.

Well, Wednesday was my first time wearing the new prosthesis. It’s been six months since I’d made an attempt at making it work, and the several attempst I have made over the last year and a half have not been what I’d call successful (even though I’ve learned a little bit each time, and I seem to have retained what I’ve learned--hoorah). There have been so many attempts, that I no longer have the excitement I have had about it in the past, like the first time I put it on. Like when I realized I could be standing and moving through space and be holding the hand of someone I care about... all at the same time. Or like when I had the excitement of putting on pants and realizing that the Average Joe probably wouldn’t be able to figure out why I have a limp. The excitement of "I've got a little secret under here!" (I know it's nothing close, but it's kind of like going to office in a business suit when you're wearing a leather g-string or something underneath.).

Well, this time, I don't have excitement. At all. What I have (and yes, I know it will change) is the sinking feeling that I have to do a whole lot of work for what I see as no instant return of gratification.

* I am wearing a prosthesis that is still under construction and makes me look as much, if not more, like a freak as being limbless (you have no idea how bad I want a digital camera folks — you really need to see this thing — the socket has DUCT TAPE on it for crying out loud... it looks like I went out into the garage and made it myself).
* I am wearing a prosthesis AND using crutches, because that's the point I'm at in my physical therapy... so I don’t have an ease of movement. What I have is a gangly mess of equipment.
* I have pain and discomfort and my skin and my muscles adapt to the materials and the workload.
* I have mental strain as I think about every single fricking step I take. I have a very frustrating time as it takes me twice as long to get from point A to point B as it usually does

I mean NOTHING in my life is immediately improved by my wearing this damn thing, AT THIS POINT. I grant you that down the road this may all change, but it makes it very very difficult to want to sign-up to put this damn thing on every day, when leaving it off means I could remain fast, comfortable, relaxed and pain free.
----------------

So back to Wednesday night and what it is that's dying and what is being birthed. It is basically the same thing in each case. And it made me cry while I was dancing it.

What is dying is my self-acceptance.

I’ve worked very hard to come to a place where I completely accept myself, my body, now, as it is, in this new configuration. I have done quite a bit of emotional processing and I now see myself as whole and complete again, just as I am. I accept myself. I feel natural.

There is something about wearing a prosthesis that to me feels like, in part, it negates my self-acceptance and takes it away from me. My emotions are extremeley complex, and this feeling of losing self acceptance is one of many sides of the same coin, believe me. But the point I'm trying to explain here is that I have this very strong feeling that putting on the prosthesis is completely contrary to my accepting the fact that I am missing a limb.

What goes along with this, is that I also feeling like I am not wearing a prosthesis for me, but that instead I am wearing a prosthesis for you (the collective “you”) because you need to see me looking like I have two legs so that you can accept me. Well, I already accept myself. But you want to help me be “restored to normalcy”. Are you helping me to be "normal" again so that I can be normal? Or are you helping me to be "normal" because it makes you more confortable than having to deal with someone different from you?

Well, I already feel normal. And so somehow, I feel my acceptance of myself dying just a bit.

What is birthing for me, oddly enought, is exactly the same damn thing. Self-acceptance. It's just in the seedling stage, but with a little water and sunlight, it shall grow. It would seem there might be a very high probability in my gaining something wonderful by having two legs again. I think it’s going to take awhile, but I think I will gain things like being able to hold your hand and walk with you. Being able to carry my own plate down the buffet line (which, actually, I have mastered on crutches…and that is something I eventually will blog about and teach you). Things like being able have options when going places that are not necessarily crutch or wheelchair accessible, not that much stops me, but it would be nice to have more ease.

Because I am so very curious about the mystery of what newness may be out there for me, I WILL give wearing a prosthesis more than a college try. I will give it everything I can give it before I make any kind of assessment of it’s benefit. And in doing so, part-time-trying will inlcude my birthing another layer of self-acceptance.
-----

After we finished dancing our deaths and rebirths, we layed down onto body sized pieces of paper, and had another person trace our outline. We spent some time adding artwork onto the paper with our shape, just as a beginning. Apparently we will work with these images again throughout the preparation for performance.

I always find tracing the body like that, kind of like making angels in the snow, to be completely magical and the little kid in me gets very jazzed.

This was my first time seeing my outline with only one leg. And I liked it. I think it looked neato. I was a little surprised I like it, but quite pleased by that. I probably liked it because it was my little inner 5 year old looking at it, and she isn't judgemental... but like I said, my adult brain is now comfortable with myself, too. And no, I'm not phsychotic and I don't read inner child books, so shut up.

As I did the artwork, I realized something else that’s been bugging me, and wrote it on the big paper:

You look at me and see what’s missing.
You don’t look at me and see what is still there.
I am still here.
I am HERE.
Over HERE.

This has made me think quite a bit about positive and negative space, and that’s all I can really say about it now, because I'm still deep in though about it.... but if you are a dancer or a visual artist of just about any kind, you probably know what I’m talking about. There is richness in the negative space. Because it is part of what defines the positive space.


Now, since this is AmpuTeeHee and it’s "often quite funny" (hoping you, too, see irony as a type of funny) let me tell you that I’ve relayed the “I am HERE” story to several people since Wednesday, and what has been hilariously sad is that EVERY SINGLE WOMAN I’ve told this to has said exactly the same thing back to me:

"I can't claim to know your experience, but it sounds kind of like how I feel when I’m talking to someone and they are looking at my boobs. It’s like, 'Hellooooo…my face is up HERE!' ”

Couldn’t have said it better myself.

comments about comments

I still have not quite gotten over my surprise that there is actually someone out there reading any of this.

Well, get this one, folks:
I'd love to acknowledge that fact, but I don’t know how to reply to your comments!
I can’t (yet, but I am trying) figure out where your email address is located in relation to your posted feeback. 'Cuz I’m not a geek. Not even close. I’m a moron. Even though I am the daughter of a computer genius, I sadly did not inherit the geek-gene. It is amazing to me that I am even able to turn on the computer....and, hmmmm....now that I think about it, I don’t even know how to do that. I actually broke the plastic power button on my CPU. Now the computer has to stay on all the time, drifting in and out of sleep mode.

SO.
I shall reply, here and now, here, to your comments:

To Jodi, who asked why I don’t write about my dancing:
Well, I DO write about it. I just haven't POSTED it yet. I’m getting there, though, I promise *smile*. I’m very new to this blog thing, and I’m still trying to understand what the differences are for me between journaling and blogging. I have many an entry just sitting in cold storage waiting to be worked over.
I have much to say about my dancing, and the neccessary editing job I am faced with is a bit daunting. I have four different dance projects/groups that I am involved with and I need to sort it all out. Stay tuned.

To mnvnjnsn:
I’d be glad to knit cat toys! Knitting and cats are two of my favorite things! Now if I can only figure out how to contact you!!!
By the way, I had no idea that Tad has a brother. “ Someone” (*ahem*) never mentioned it. There seems to be a growing list of animals left behind by “someone” in the wake of ending relationships (I was scowled at when I asked "someone" if there were more bastard "children" I hadn't heard of yet). I now realize that in addition to kittie toys, I may eventually need to knit up a dog sweater for a bereft corgie, too. Oh, and KnittyKittyToys are on the house.
Newsome, this is for you:

To Sara, the one person who I DO have the ability to email:
Aye aye aye!!!! I owe you an email! GADS! I have Sooooo much to tell you that it keeps me from sitting down to email you because I feel like I’ll be here for an hour, and I just don’t have an hour right now. So I do nothing. But I think of you OFTEN, and no, I don’t have $300+ for boots either, but I did find some that will fit my prosthesis for only $198.
Ummm...
Yah.
Right.
I really really miss the days being able to walk into Payless Shoes on Buy-1-Get-1-Free-Day and walk out having only spent $15.
--------------------------------------------

I hope some day to have TheMIG teach me how to do a few things on the computer. He is no ordinary geek, as he went shopping this week and has now transformed himself into SuperGeek aka LaptopBoy. And he is very yummy when he's being geeky, and don't ask me why (and don't laugh), but I get excited just watching him type and click and stuff. And now LaptopBoy can be doing that just about all the time. Anyhow, maybe he can teach me to do a few things....liiiiiiike reply to comments (doh!). And put links in the sidebar (so that it doesn't say "edit-me".) And get a photo up near/in my profile.

If I experiment long enough, I might be able to figure a few things out on my own (like I figured out how to put links and photos in the text), but when I do figure things out, it's usually just dumb luck.

a label i can live with

I don't think I've been posting long enough for anyone to be able to tell that when it comes to being an amputee, I am primarily positive about it. Don't get me wrong, it's no joy ride. I do allow myself to have feelings of sadness or anger or depression (or whatever--and the list can be long) about being an amputee...but I allow all of my feelings to be present because I believe that being immersed in so called "negative feelings" is much healthier than squashing them down. But make no mistake: I don't live in those feelings. I just allow myself to visit them. Honoring them helps me move through them, and besides----they're excellent fodder for creating art, silly.

So anyhow, for the most part, you'll find me to be quite the optimist.
I don't let losing a leg be the End All Be All definition of me.
And my life is great.
So what is there to complain about? Right??

Wrong.
Today I'm going to complain about people labelling me.
Actually, to be more specific, people who insist on labelling my feelings.

---------------------------------------

Something drove me absolutley insane while I was in the hospital recovering from the car accident. People would visit and tell me what a "strong" person I was, or how "brave" or "courageous" I was, or (gag me, please) what an "inspiration" I was.

I hated it then.
And almost two years later, I still hate it now.

I am not strong. There are still days that I crumble underneath the weight of this experience. Sometimes I wake up and I just don't want to be a gimp anymore. I usually whine quite a bit, and sometimes I cry, and then I pick myself up by the bootstraps anyhow. If I can't pick myself up, I give myself a day or two to feel pitiful. But I personally do not see a connection between choosing to forge ahead and being strong. Often there isn't even a choice but to forge ahead. It's more about knowing that I have responsibilities and I dont have a choice but to take care of things that are dependent upon my effort. Please stop patting me on the head and telling me how strong I am. I'm just getting MyFK ready for school and feeding the dogs.

Also in this category of judgements is when someone tells me that if this happened to them, they'd probably just end it all. Great. Thanks for sharing.

I am not brave or courageous. I don't know why I see it this way, but I believe bravery is also a choice we make. Debate me if you care to, but I believe that we get faced with something and we choose to deal with it bravely. Or we don't. Separate from the issue of being faced with it.

I dont deal with this situation bravely. Not even close. Nor do I take this as a challenge (from you or from myself or from the the Powers Above) that I need to triumph over. I just deal with it. And usually I'm scared.

Many have told me that bravery is when you are scared, but you make the choice to face your fears and move forward anyhow, despite your fears. I'm sorry, but I don't have a choice. I have to do life this way. This is not like the bravery I needed when I quite my high paying job to go to culinary school so that I could start on the bottom rung again and slice tomatoes for a living. THAT was a choice, and I had to be brave to make that choice. Took me five years to get the balls to do it, by the way.

I am defintely not an inspiration. For starters, I dont want the responsibilty of inspiring anyone. I will never be a motivational speaker or be the head of an amputee support group. I might end up being the impetus for you having your own feelings within you that inspire you. Fine line between between being inspirational and being an inspiration, I guess...but let me illustrate:
It's like when you and your fat lazy ass are riding the escalator and you see me hopping up the stairs on one leg and crutches, and you somehow get insipred by that. But I was just getting up the stairs. Because I'm scared of the escalator. And what is inspirational about that. You tell me.

---------------------------------------------

PEOPLE. What I'm doing is the same thing that most people do when facing a major crisis or loss. I'm dealing with it. I'm doing what anyone would do if we were dealing with an illness, a catastophe, or the death of a loved one, for example. There's nothing inspiring about it. It's just another part of being human. There is nothing different between me losing a leg and my girlfriends losing their breasts to cancer. It's just that tragically losing a leg is a bit more visible and shocking to you. But it's the same thing. This is just my version of what life deals all of us. This is the same type of difficult life lesson we all end up getting at some point or another if we live long enough.

-------------------------------------------

Well, Saturday night I was at a party, and headed straight for me was a casual acquaintance from a monthly discussion group (NOT for amputees--ha). I hadn't seen him in awhile. He wanted to tell me that he thought about me often. He'd been reflecting about things that I had said during the group meetings, and he was starting down the road of wanting me to know that I'd made some huge impression on him.

It's usually right about this point in a conversation that I start holding my breath. It makes it so that my ears start ringing once you start in with the litany of crap about who I am and what it is I am feeling.

He said, "(blah blah blah.....and I'd like to say you are so courageous...." My ears weren't ringing enough yet and I just knew I was about to have to stomach being christened as brave again.
But then he said, "....but courageous...that word is such bullshit."

I think I actually exhaled an audible sigh of relief.

"What I think...... is that you are determined."



And so thank you Joshua, whom I barely know, for giving me a wonderful gift.
The next time someone tells me I am so strong or brave, I can tell them that I am not. I am just determined.
Because that is true.
And THAT is a label I can live with.

knitwhit

Alright. So I'm a gimp. And I'm a gimp that knits.

What does knitting have to do with being an amputee??
Ummmm....
Nothing.
I guess if I was missing an arm and knitting with my feet it would have everything to do with being an amputee. I guess the only relation between my knitting and missing a leg is that I am often sitting on my ass. Finding something to do with idle hands often seems important.

Here's my knitting story. Selfishly published. Because I'm not about to start a separate knitting blog.
So get over it.
Or skip it.





HOW I STARTED:
When I was seven years old, I taught myself to knit from a little book. I remember making "egg cozies" (litte sweaters for soft boiled eggs) for my grandparents. When I was ten or so, I joined an after-school knitting class and made a babydoll sweater. It was a something like a varsity sweater, and it was Charlie Brown Yellow with a couple white stripes. I remember being instructed through armhole decreases and seaming, but I must have gotten more than just a little help because I didn't retain any of that information.

I didn't pick up the needles again until my mid-20's. I was often stuck in meetings that had the air conditioner set to "ice-box", so I decided to kill two birds with one stone and knit a BigFatScarf for myself. I made friends with another trapped and frigid attendee, I taught her to knit, and we'd sit there knitting and looking like freaks. This was in the early 90's, near the close of The Dark Ages of Knitting. I bought the yarn for the BigFatScarf at a Payless Drugstore. It was a variegated acrylic. I wished I'd known there was probably good wool available by mail order. There was no one to tell me. All the seasoned knitters were hiding out at home with their imported yarn.

So anyway....after my BigFatScarf, I got bold and decided to attempt my first garment. A very simple, but boxy looking, tank top. And I was going to try to find some nice yarn for it. I discovered that there was a yarn manufacturer that also had a store front. Most of the yarn was in bulk on cones. I felt like I was a foreigner in some strange land and I definitley did not speak the language. I fumbled my way through picking out probably the ugliest mauve colored ribbon I've ever seen.

Back at home with my needles, I failed. I couldn't make sense of the Family Circle sweater pattern and figuring out how to get gauge was something completely beyond my understanding (reflecting back, I think I tried doing a swatch in stockinette, but the sweater was in a different stitch pattern). I didn't know that knitting is mostly basic algebra. There wasn't anyone to ask for help. No classes. No knitting groups. No internet resources. It didn't take me more than a few inches into the project to know that this thing was going to end up being huge. I was also pretty sure I didn't have enough yarn, but I couldn't tell because the cone offered no yardage information, and I had only guessed it would be enough. So I stuffed the puke-peptobismal-mauve tank-top in a bag and never knit another stitch. At some point I must have unravelled it because I found the yarn last year and, believe it or not (if you knit, you believe it), it still sits in my current stash.





WHAT MADE ME PICK UP THE NEEDLES AGAIN:
Enter Fall 2004. Several of my various doctors are telling me to take up a small task I can do with my hands. My right arm was severely injured in the same car accident that claimed my leg, and the arm isn't fully functioning. So I decide that for physical therapy, I'll pick up some needles and yarn. And I began to knit. And I knit and knit and knit. I make a lot of stuff in a little over a year, most of which is knit in the waiting room of doctor's offices, which is a very frequent occurance. Sometimes up to thirteen appointments a week. Really. Believe it.

I pick up some knitting books, I learn how to do some shaping, and I graduate from scarves. I learn how to use double pointed needles, make a few neat things by just winging it without a pattern, I accomplish sock making, and I start my first sweater (it's almost done...I'm seaming it right now).

I go to a local Stitch-N-Bitch when I can (which sadly isn't often, as it collides with dance rehearsals), and I regularly attend a weekly workshop at my favorite Local Yarn Store (LYS), Skein Lane. I love this class. We can bring along whatever we are working on, knit and chat, share ideas, successes and failures, and if we get stuck on our projects, there is a teacher there to help.



WHAT I'VE MADE SO FAR:
* Pink Long-n-Fuzzy-n-Skinny Scarf
* Boy Scarf, for TheMIG
* The Kitty Hat (from Stitch-n-Bitch), and that's me in it, above
* Picot Gauntlets/Fingerless Gloves from the first issue of Knit1
* Two Snake Scarves ("HissyFit" was for MyFavoriteKid, he picked the green yarn and yellow eyes himself...and "Acidophilous" is mine); I made up the pattern, see pic
* The Frothy Red Scarf that I sold to Laura the bartender who admired it while I was knitting and sipping
* Socks...a pair for me, and a pair for TheMIG
* Two intarsia hats, samples I knit on comission for a company that sells felted hat kits
* Two Stuffed Toys for TheMIG (Stripe & Yellow--characters from one of his favorite books as a kid)...my own design
* Two Ice Cream Pint Cozies for my dancer friend M. Because if one should desire to eat a pint of Ben & Jerry's, one should not have to wrap a towel around the container *smile*
* The Little Noro Purse (lined, thanks to a class with Lorna Miser of Lorna's Laces) given to K's for her b-day
* Coffee Cup Holder for TheMIG (so his hand doesnt get hot; like the cardboard sleeves, only better), my own design.
* Bath Mit, another gif for TheMIG, my own design...inspired by, but nothing like, bonbon.
* Kitty Tortellini (cat toy for Tad)...It was supposed to be a wonton, but I dunno. Whatever.
* Shape It Scarf (from Sally Melville's book) knit in recycled silk for a very spirted woman's 90th birthday.
* The Silver Keyhole Scarf, winging it again, but c'mon, it's only a scarf
* The Rockstar Scarf (from Knitty), here

IN PROGRESS:
* Under The Hoodie, from Stitch-n-Bitch (my first sweater--all of the knitting is done, I'm seaming the sleeves as we speak! As I type! Whatever!)
* The Gothic Baby Sweater, aka Elizabeth Zimmerman's Baby Surprise Jacket (also just needs to be seamed, and I need to finish making the custom shrinky dink buttons with funny skull cartoons on them)

CURRENTLY ON THE NEEDLES (I actually cant believe I only have one thing on the needles! Wierd):
* Mom's Sherbert Colored Socks (on the 2nd sock, top down & past the instep). It's taking me forever to get these done because I can't stand looking at the colors. Sorry, mom.

NEXT IN QUEUE (and I've got the stash):
* The FishBone Hat for MyFK, from the Mission Falls book "Just Kidding"
* Some kind of fingerless gloves or gauntlets made out of the same Koigu to match the Rockstar Scarf

NEXT COVETED PROJECT:
* Jessica, seen here (I have some left over yarn from Under The Hoodie, but need more--shopping. Darn.)
* Latifa, seen here (I have the Koigu in a gorgeous in a blend of peacock purples, blues and greens...but I need yarn for the body of the scarf)

UFO's (unfinished objects):
* The Inca Hat (Mission Falls, "Just Kidding"): it's done, but it's not as cute as it could be because it's just a tad bit too big. I need to decide what to do about it. I'd love to full it, but I can't--it's super wash. My idea was to sew in a casing for elastic. My knitting teacher's idea is that I should unseam it, steek it, cut an inch or two off and reseam it. Yeah right. Steeking. That'll be the day. I have a feeling I'm going to rip it out and re-do it. But I'm open to suggestions.

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Now you know alllllllllll about my knitting.
Probably wayyyyyyyyyyyy more than ya' needed.
But now I feel like I can plop in a brief knitting update and feel like there's a background (why having a background established is so crucial to me is something I should reflect on, because really. Who cares. Hmmm.) I don't have a digital camera, so knitting posts wont be all that interesting, I'm sure. But TheMIG has one and I'll try to have him snap a few every once in awhile.

Happy Knitting and Gimping

things that change in an instant once you are missing a body part

I'm sure I could make a very long list of things that have changed now that I cruise around town with only one leg (I'm not currently wearing a prosthesis, so it's not something imperceptable). Most of the things that have changed are things any of you could guess, as they seem relatively obvious. But some are things I wouldn't have expected, some are just plain fascinating to me, and others are things I'm not particularly happy about having in my reality (but-whatcha-gonna-do).


* Identifying Features
This falls in the "not so happy having this be in my reality" category.
It drives me nuts to know that if you were sending someone to go find me amongst a room full of people, that it now only takes one sentence to describe me. "Oh, she's the lady with one leg." It used to take more than that. "Oh, she's brunette, about this tall...yaddayaddayadda..." I just cannot stand that having one leg is my primary identifying feature. (That's kinda funny. I can't STAND it. hahaha.)

When I was a kid, I remember my parents filling out a form they would keep on hand in case I ever went missing. It had a recent photo, my height, my weight, and any "identifying features". I have a little birthmark on my left cheek. THAT was my identifying feature if I were to turn up in the morgue.

No more need to hunt for a mole on my cheek, that's for sure.....although I was relating this to someone the other day, and he was very amused with himself, suggesting that TheMostImportantGuy in my life should still use that description. "Oh, my girlfriend?? She's the one over there--the brunette with the birthmark on her cheek." HA


* Homeless People Don't Ask Me For Money Anymore
This one falls under both "fascinating", and "I wouldn't have guess it".
People no longer ask me for handouts. It was a trip the first time I started to notice the silence. It's quite pleasant. And quite disturbing. Simultaneously.
But jeez, people, really. Like missing a leg means I'm poor?! Sheesh. (I mean, I AM basically poor, but how presumptious!)
And what's the deal? Is it that because I'm missing a body part, I'm now in some secret society, or something??? I mean homeless people now wink and say hello and call me "sister"! And I don't look homeless! (At least I don't THINK I look homeless....do I need a reality check and a makeover??)

Actually, I wouldn't say they don't EVER ask me...because they do. In fact, I was hit up for spare change once a couple of months ago. And right after he asked me, the guy looked down and saw my leg and APOLOGIZED because he didn't "see my condition".

Bell-ringers, outside a store collecting for a charitable organization, still ask me for money about 50% of the time. But the other half of the time they just "god bless" me.

I've thought about seeing what happens if I stood on a street corner with a "Need Help--Hungry" sign. Just as an experiment. And a free dinner. Seriously. I'll bet I'd rake in bucks. Sometimes I think I should carry an empty can in my backpack for certain occasions. Like recently--I was strolling Haight Street with TheMIG and he darted into bar to use the restroom, and I decided to wait outside. So there I was, sitting on the sidewalk in a wheelchair, with lots of foot traffic, and I was equally spaced between two characters asking for change. I bet if I had a can someone would have plopped something in it.

------------------------------------

So it's a short list for now.
Just a beginning. I'll be adding on, I am sure.
But I wanted to get it rolling while I'm thinking of it...and who knows. Maybe some other gimp will read this and share.

Something like a Soap Blogpera

I’m such a retard about computers and the internet. So retarded actually, that about this time last year, I actually sent an instant message to TheMostImportantGuy in my life to ask, “What’s a blog?”.
Seriously.
I didn't know.

From TheMIG I get back an IM:
"Short for WEB-LOG"
and then:
http://mnvnjnsn.diaryland.com/

My then 7-year old was hanging out in the same room with me, and since I’d already learned the hard way that opening a link from TheMIG might net me some kind of ass shot that I might not want my kidlet exposed to, I thought to ask first what the link was going to take me to before I clicked.

“It’s my friend Emily’s blog.”
“You mean like your EX-GIRLFRIEND Emily??”
“Yes.”
“And why on earth would I want to read her blog?? I don’t want to know anything about your ex-girlfriend, and I especially do not want to bump into anything about you!”

Maybe it’s worth mentioning what our relationship looked like at this stage. We’d been seeing each other for about 9 months or so. We were an item and nobody knew about us. Our lives were completely autonomous. I had gone to see his current band play once, but nobody there really knew who I was or why I was there, and I don’t think any of his friends (except one) knew I even existed, and not a single member of his family knew he was seeing somebody new. He wasn't involved in any of my circles, either….well, until he was basically forced to during the time of my accident. He stayed in contact with one of my friends to keep abreast of my lengthy and unconcious stay in ICU.

Anyhow, the point is, TheMIG and I were very intimate, but our lives outside of our time together didn’t overlap. And we liked it that way. Quite frankly, I didn’t really want to know a damned thing about his ex-girlfriends. Now this was a first for me. For the first time in any relationship ever in my life, I honestly did not need or want details, nor did I have a single curiosity about his life before me. And I didn’t feel the need to get too involved with his current life beyond me. It was like we were super secret special friends, and it was really fun that way (and it still is a bit that way, and it still is really fun).

So back to my asking him, “WHY would I want to read this blog,” because it seemed like an especially good question.

“I sent you the link because her blog is good. She just writes well and it’s an entertaining read…a good example of a fine blog. She never writes about me. ”

So I click.

And I get this entry, which not only mentions TheMIG but also links to his photo!!!…..and I completely flip out. Because I KNEW this would happen, right? And I get overly upset about it...probably because I was pms-ing or something….but guess what?!?!
I keep reading the blog.
No, I don't mean I just finish reading that entry. I mean, in a few days I get over my initial shock, and I go back to read it some more. And I keep reading it. For days. And weeks. And months. And honestly, I know it sounds hard to believe, but I read this blog all the time and 99% of the time it never occurs to me at all that I’m reading the blog of my boyfriend's ex.

Why do I read it?? Well because she just writes well and it’s an entertaining read….a good example of a fine blog. And TheMIG is right, she never writes about him. Okay. Well. There was one other time. It was the day his band’s cd was released, and she posted an entry that included their high-school prom photo. But seriously, her blog really is about other stuff.

SO.
Here’s the Soap Opera part.

TheMIG is a dummer in a band, right?
And who do you think is the guitar player in his band??
The ex-girlfriend’s older sister.
Yes. I know. Small world.
And who’s getting married this Friday?
The guitar player in his band.
And who’s coming to the wedding?
The guitar player's little sister, TheMIG's ex-girlfriend.
And who’s also going to the wedding?
TheMIG....and me.
Is it a big wedding so I can kind of hide out?
Of course not. That would be too easy. It’s under 50 attendees.
Am I going to feel awkward meeting TheMIG’s ex-girlfriend??
YES.
But NOT because I’m meeting my boyfriend’s ex.
I'm going to nervous because I feel like I’m meeting some famous person that I’ve been reading about in tabloids. For crying out loud, I know where she works and when she’s been out of work, I know what kind of meds she’s on, I’ve read a few great ideas and a few brain farts, and I’ve seen a kazillion photos of her cats.
THIS IS GOING TO BE WEIRD.
And I’m not exactly sure how to handle it! (any ideas out there???)

I’m not sure what she knows about me. If she knows anything, it probably comes from her sister I guess, and I can't imagine either one knows about this blog because I dont promote it. If she’s ever seen anything of mine, it would probably have been my ass.

Well, here’s the next car in the train of thoughts. The other day I was reading her blog and she was complaining that she had gained weight just in time for her sister’s wedding and that’s when I was hit over the head with the reality that I could be reading her blog the day after the wedding and what if there's some danged entry about how she met her ex-boyfriend’s current girl?
YIKES!


I am
cracking up
because it's
so funny.
AWKARD funny. UNCOMFORTABLE funny.
Ewww.
So I guess I need to find a way to introduce myself and not come off like some kind of spy, which I'm not, but I resemble. Oughta be interesting, if nothing else.
Or maybe I keep my mouth shut so if she does post soemthing like that I get it nice and unedited.


Happy Thanksgiving everyone!

unicycle

Everyone, and I do mean EVERYONE, has been telling me that swimming would be the best exercise I could be doing for myself.

What does the physical therapist say will help strengthen the correct muscles groups ?:
swimming
What does the physiatrist say will help with swelling and circulation ?:
swimming
What does the acupuncturist say will keep my "Chi flowing" ?:
swimming
What will keep my hip socket open, avoiding contractures ?:
swimming
What’s the best aerobic workout I could create for myself ?:
swimming
What will help me develop core stability ?:
swimming

All roads lead to swimming. Alright people, I get it.
And I've finally made it to the pool.

I’ve been hemming & hawing about it for a long time, mainly because I know for a fact that I can talk myself out of a regular swim routine verrrrrry easily. Way too many excuses readily available.

“I don’t want to swim laps today because (insert) ….”
* Ewww, I don’t want to smell like chlorine.
* it’s cold outside and my head will be wet when I leave. I don’t want to get sick.
* I don’t have my things packed up.
* it's too far to drive. Too much traffic. Parking sucks.
* the sky is falling.

Add to this list the fact that I started checking out pool options just for kicks and giggles, and I could only find pools that were about 20 minutes away in morning traffic with no parking, and the rest were private clubs that were well out of my price range.

But guess what. I happened to be cruising around the other day and noticed a public pool in my neighborhood that I didn’t even know was there before. It’s actually on the campus of a high school, but it’s serving as the public pool while the old public pool building is being retrofitted (it’s been closed 4 years, and they just gained funding for construction…and guess what...there was a fire in part of the building two days ago). In other words, I've got awhile here at this pool to get a routine established.

Anyhow, this place is affordable at only $2.20 a swim (while the next closest pool is $5.50—yikes). It’s about 5 minutes away on city streets, there’s a huge parking lot, and the hours of the lap swim pretty much work for me. And it’s a really nice pool! I scoped the place out on Wednesday, then I went back today to buy a 30 visit pass and take my first swim.

Now, I used to swim competitively as a kid. But it’s been a looooong time. Like about 30 years, a long time (daaang, I'm gettin' old). Since I lost my leg, I have been in water and have paddled around, but this was my first real crack at actual laps. Aside from being out of shape and needing to catch my breath between passes, I did pretty darn good! I only did about 1/3 of a mile, but I think that’s a good start for a first day out. I found I drift out of my lane a little bit because having one leg makes me steer funny, but after awhile, I figured out how to use my arms or the cupping of my hands to compensate. I also used a fin on my sound leg.

One lady came over and asked me how long I’d been swimming, and when I told her it was my first day in years, she was impressed. As it turns out, she’s a retired swim teacher, and she used to teach a class for amputees and people with spinal cord injuries. She had some neat ideas about finding my center while floating and sculling in different positions. Then later on another lady came up to me and told me that I had a really strong backstroke, and that I must have been developing it for a long time…HA!

Anyhow. I guess swimming is like riding a bike.
Or in my case, like learning to ride a unicycle ;-)

egads

This could have been me.

pc for prosthetists

Well, I have to tell you...now that I have a disability, I have been exposed to a whole new sub-set of PC Lingo.

In fact, there is a fine example!
I'm not disabled, you see.....oh no, no, no....I have a disability.
Whew.
Glad they cleared that up for me.

Well, at some point I'll do a longer post of some of the terms and labels people have shared with me lately....cuz it's a riot. I'm just dreading the hate mail I'm bound to get. I'm really not entitled to comment on what it's like to be disabled, you know. Being that I still have one leg that functions and it's assumed I will walk with a prosthesis someday, I'm not really disabled like a real disabled person. Oh, and I've only "had this condition" for a year and a half, so what do I know. Right? Riiiiiiiight.

Anywhoooo.....here's the PC term my new medical team has been throwing around:

"soft tissue"

What they are referring to is my "big fat ass". But they just can't come out and say that, now can they?!

See, what happens (in my very layman's terms) when you are an Above the Knee Amputee (AKA) , is that there is suddenly this huge need to locate your "ischeal tuberosity" (looove that word--we use it in my dance class), more commonly known as your "sit bone". When you are fit for the socket portion of your posthesis (the part that goes over your remaining thigh), your sit bone will end up resting on this little shelf that is built into the upper lip of the socket. This is important, because it is onto this little shelf that the bulk of your weight should be going, rather than your weight dropping straight down into your remaning femur and into the bottom of the socket. It's also important that your sit bone make a nice solid contact with this little shelf, because it will make it easier to control the leg when you walk. SO. The prosthetist really needs to know exactly where your sit bone is. Which means they poke at your bumm. Which means that f you have a big fat ass (Oh! *ahem* pardon me!!!), I mean, if you have a lot of "soft tissue," then they realllllly have to poke at your bumm to find it.

So what I get is, "So, you see....it's a bit more of a challenge to contain the sit bone in a person with soft tissue..."
Aye aye aye.
So what you mean is it's hard to get me fitted because my butt is big.
Don't crack me up!!
It's BIG because I've been SITTING ON IT for 18 months now waiting to get PROPERLY FITTED. Argh.


I keep thinking about that stupid little phrase you see in those catalogs full of cottage-style-crafty-crap...you know, the little needle-point wall hangings with the sheep that says "Ewes not fat! Ewes fluffy!!".
Makes me want to knit up something that says:
My butt's not not big! It's soft tissue!
Hmmm...new t-shirt??

Ooooo. Maybe a toilet paper commercial!!:
Soft tissue for your soft tissue!

I know.
Don't quit my day job.

Oh yeah.
I don't even have one right now.

late night tube

I woke up at 3am-ish last night and couldn't get myself back to sleep...so I popped on the tv, figuring there'd be something boring enough to get me nodding. I was amazed to find that there was interesting programming even in the wee hours. Even if it did keep me up until 5am. Sheesh.

I watched The Life And Times of Frieda Kahlo on PBS.

I'd seen plenty of her paintings over the years, and I studied some of her work for a "Women In The Arts" class in college. I didn't know much about her personal life, though. I only knew that she'd had an accident resulting in a lifetime of pain, I knew a bit about the Mexican Revolution and her political interests, and of course, I knew a bit about her relationship with Diego Rivera.

And, no, I never saw the movie.

This PBS program was very in depth, drawing deep relationships between her life and her art. I gained a better understanding of why her presence is so strong here in the San Francisco Bay Area (she spent several years here). It was also the first time I'd ever seen her on film, in motion. Up until now I'd only seen still photos of her, and I was very drawn in by her physical presence when she moved.

I'm certainly no Frieda Kahlo myself, that's for sure...but being a survivor of a motor vehicle accident, acquiring a broken body and a long rehabilitation, establishing an entirely new relationship to/with pain, having this in-one-split-second life change happen when I had just reached what I felt to be some sort of peak of achievment in my life (even though I believe we all have more than one), and being an artist needing to find a way to have my creative process be part of my healing process.....all things she and I have in common....I found myself really relating to many of her journal entries that were read during the program.

We also both created art in honor of the 1 year anniversaries of our accidents. Frieda (The Accident), me (Door Number 3).

Oh. And even though she didn't live the bulk of her life missing a body part, I never knew that she actually had become an amputee, losing part of her right leg to gangrene, the year before she died.

fan mail

This entry would be a whole lot funnier if I could just post a copy of an email I got yesterday, with not one single additional word by me attached....

But.
Since this is only my second post, I feel the need to set-up the story a wee bit so that it makes some sense:


Not long after becoming an amputee, I started keeping a list of the stupid things that people said to me. Things like, "gosh, your hospital bill must be costing you and arm and a leg!" (that's for real--my son's paternal grandmother actually said that to me while I was laying in the rehab ward). I also had a running list of the stupid things I'd thought of all by my lonesome self. Things like, "well, at least I'll be the cutest amputee on the block". Many a time, I found myself saying, "Dang. I wished I had a shirt that said that." Eventually one of those thoughts actually made it to shirt-dom.

"Leg Story: $10" came about after spending a week at Harbin Hot Springs detoxing off pain meds and having no less than 30+ people asking me to tell them what happened to me. I got very sick of hearing myself tell the car accident story over and over again (although in a way, it was highly cathartic), and I commented to my Sweetie that if only I'd had ten bucks for everytime I had told the story, it would have paid for my stay there (I should tell you that the best thing about wearing this shirt is that when I do, nobody asks me a thing...they just say "nice shirt"). Being the money guy my Sweetheart is, this was enough to have him upload the design for me at Cafe Press so that I could order a shirt for myself. But his idea was to then leave the image uploaded and see if anyone else came along and ordered stuff and maybe make a few bucks. Well, people came and ordered stuff. And as we kept coming up with more funny stuff for me to wear, folks ordered more.

So people--hear this!! The REAL impetus for the stuff on the Cafe Press site is that these are shirts that I wanted to have made for me so that I could wear them.

There are several designs entirely created by my Sweetie that are completely his own doing...like "25% Off"...and I split a gut every time I put that one on. Besides showcasing his pure comic genius, my favorite thing about that shirt is that when I wear it, it makes people realllllly uncomfortable. See?? I'm a little odd.

Now, please ALSO understand that my favorite place to buy shirts on the internet is from T-Shirt Hell.
In fact, when I met my Sweetie for the very first time, he was wearing this shirt (well, I wanted to link to T-Shirt Hell's "Abortions Tickle" shirt, but apparently they've pulled it *pout*). Anyhow, he wore that shirt at our first meeting, and I totally cracked up. In retrospect, it was probably some kind of litmus test.

And so the other newsflash is: Hellooooo....I like offensive shirts.
And some of my own t-shirts ideas are probably offensive to some people, yes ("lucky for me he's an assman" comes to mind).

Thanks for pointing this out people, but I already know this. And I have gotten some flack from other amputees, especially other females. But whatever. The stuff is there so that I can order it. So I really couldn't care less what anyone else thinks. If ya' dont like 'em, dont buy 'em.

Quite frankly, I think my sense of humor about being a gimp is what has saved me from myself.

Anyhow....I've said so much this probably wont even be funny anymore, but try to pretend that you just got to this post and that you already knew I had offensive t-shirts for amputees and stuff, and read on.

Because I cracked up when we got this email yesterday:

From:
Sent: Monday, September 19, 2005 4:48 PM
To: whatever@amputeehee.com
Subject: (no subject)

i am appalled at the attitude and marketing of your site. being an amputee is not a funny thing. if i ever become one or know someone who is, i will not patronize your site

how to advocate for an ass-whipping

So I now have a new rehab team.

My physical therapist couldn't get me past walking with a cane (April), my prosthetist wasn't effectively dealing with the issue that my prosthesis was so ill-fitting that I was getting sores (June), and my physiatrist (rehab physician) literally up and left his post with less than one week's notice (August). Once that happened, the (very wonderful) physiatrist temporarily filling his post referred me to the Rehabiliation Center at Kaiser Vallejo. I went there September 6 for an "Amputee Clinic". This is typically where a physiatrist, a prosthetist and a physical therapist all sit in the same room and assess things together.

I took a stroll (ok, a stroll on crutches...what does one call that, anyway?) through the rehab facility before my appointment, and would have cried from sadness had I not been so excited. I can't believe I wasn't referred there months ago. But really. I dont want to get stuck being pissed off about that. I'd rather enjoy being so glad to finally be there.

Anyhow...I do want to share more about that day in the amputee clinic, especially more about the new prosthetist, but that's for another post. What I want to write about today is what kind of pushing I had to do to get a subsequent PT (physical therapy) appointment.

You don't get a PT appt without the physiatrist authorizing it, or "writing a prescription" for it. So I asked the physiatrist, (nicknamed) Dr.Sam, if I could meet with the new physical therapist while waiting for my new prosthesis/socket to be built. He said he didn't think it was neccessary, and that there really wasn't anything more they could do for me until after I got the new leg. I sat with that edict for a good long day and just couldn't shake how wrong it felt.

Here's how I see it: The expectation is that I will get this new prosthesis and I will wear it every single day, for as long as I can tolerate it each day, and work as hard as I can to get walking again. Well, folks...I haven't really walked in 18 months. Basically, I use crutches (different muscle groups), and I sit in a wheelchair. I had a few months where I wore a prosthesis on occasion, but it never fit well, and I mostly sat in it, not walked in it, and when I did walk it was sloppy. MY BUTT IS OUT OF SHAPE. Figuratively and literally. Those muscles haven't been used at all. AND nobody has EVER given me a strengthening routine to use in preparation for walking again!

SO. I emailed Dr.Sam and told him this: That when I was in the hospital rehabilitating from the accident, they never gave me much in the way of a routine for my residual limb/stump/remaining leg/whatever-you-wanna-call-it. This was because my pelvis was fractured in the accident too, and I wasn't supposed to do much until the orthopedic surgeon cleared me. Once I got clearance, I had already been discharged and was at home. I was recieving some in home care at the time, but wasn't given a workout to follow. I was just told to sleep on my stomach so my thigh socket wouldn't get contracted (stiff and unable to extend fully open). The next time I was given physical therapy, it was after I got the 2nd prosthesis, and it was gait training (learning to walk)...but still, no real exercises to get strong aside from the walking itself! I told Dr.Sam in the email that I wanted to meet the challenge of walking head on, and not be totally unprepared in 4 weeks or so on "New Leg Day". I promised to make good use of any PT hours he would give me and that I would follow any routine given to me. I told him that I wanted to be supported in being successful. And yay--he gave me what I asked for. He wrote back that he set up a prescription for Pre-Prosthetic PT.

I was very proud of myself that day. And it also really made me wonder (once again) how people navigate the frickin' medical system if they don't know how to trust their guts, or get a second opinion, and then advocate for their needs! Argh. And I say "people" but I am one of those people!! I am constantly wondering how I am supposed to advocate for myself when I don't even know what it is I'm advocating FOR half the time! THIS IS NEW! And prior to this accident, the most I'd ever been to a doctor for a "condition" is when I was pregnant! Aye aye aye.

SO. This the next thing that happens: the PT then calls to say she's received the prescription but doesn't think I needed any PT, until I get the new leg and all...since I'm active and I'm a dancer and all..... *sigh* so I had to go through the whole danged plea again....but once she got the news that I had never been given an exercise routine, she too, heard me and set me up for her next available appointment.

Which is today.

So I've advocated to get my ass whipped back into shape (I'm sure my sweetheart will appreciate that, being that it's gotten a littly lumpy and he's an assman and all LOL). I just need to actually DO the routine she gives me. I need to give this walking thing one more try, and at 110%. If I can't succeed at wearing a prosthesis and walking this time, I'm not sure it will be too easy to muster up the desire to attempt it again. But I don't think it's fair of me to come to that conclusion and give it up if I haven't tried my hardest. That end result would be me deciding to just do life on one leg with crutches. Screw it. I'm used to it by now anyhow, it's been a year and half since I lost my leg. But I keep thinking to myself, "if there are above the knee amputees like me out there doing triathalons, it shouldn't be asking much to be able to walk, now should it??"

testing

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