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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