Comments on: KAFO to Work http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm Talking about Body Integrity Identity Disorder - Just another disability! Fri, 30 Jul 2010 12:06:53 +0000 http://wordpress.org/?v=2.7-beta2 hourly 1 By: Wheelchair Fairy http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-20402 Wheelchair Fairy Sat, 01 May 2010 11:21:08 +0000 http://transabled.org/?p=2238#comment-20402 @Brice Yeah, it's an interesting question. In my case... well, until I wasn't aware of the source of my BIID it was also a need and a desire. Now that I've faced so many things my need is to be able to love and accept myself enough... but my desire stayed the same as for being a wheelchair-person ;) Love: Fairy @Brice
Yeah, it’s an interesting question. In my case… well, until I wasn’t aware of the source of my BIID it was also a need and a desire. Now that I’ve faced so many things my need is to be able to love and accept myself enough… but my desire stayed the same as for being a wheelchair-person ;)
Love:
Fairy

]]> By: Rhayven http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-20393 Rhayven Sat, 01 May 2010 01:26:24 +0000 http://transabled.org/?p=2238#comment-20393 @Chloe Thats always awesome .> just .. SOmething >.< I would love to get KAFOs and a wheelchair - but the actual possibility of getting them right now where I'm living is impossible ... @Chloe

Thats always awesome .> just .. SOmething >.<

I would love to get KAFOs and a wheelchair - but the actual possibility of getting them right now where I’m living is impossible …

]]> By: Chloe http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-20386 Chloe Fri, 30 Apr 2010 20:58:42 +0000 http://transabled.org/?p=2238#comment-20386 Gosh! It's actually been a year of wearing a left KAFO almost every day; a decades old dream come true. Adding a wheelchair into the mix has not diminished my wearing the KAFO. The two together is clearly better for my BIID than either one separately. These things are not necessarily obvious ahead of time. The KAFO free days are for hiking or skiing, but I've already been hiking several times with the left KAFO. The orthopedic shoes are phenomenal. I've never worn anything so comfortable and I love the excuse to flout the conventions of style. I just do my own thing. Today I'm wearing a mid-calf pink skirt, pink ankle socks and transparent pale pink stockings underneath. All very delicate and femme to go with my clunky brace and shoes. It's interesting how a leg brace can become so integrated into one's body space that it feels like something is missing when it's not there. When I'm doing laboratory work the wheelchair is a major inconvenience, so I get up and limp around with the brace. Not a problem. Gosh! It’s actually been a year of wearing a left KAFO almost every day; a decades old dream come true. Adding a wheelchair into the mix has not diminished my wearing the KAFO. The two together is clearly better for my BIID than either one separately. These things are not necessarily obvious ahead of time.

The KAFO free days are for hiking or skiing, but I’ve already been hiking several times with the left KAFO.

The orthopedic shoes are phenomenal. I’ve never worn anything so comfortable and I love the excuse to flout the conventions of style. I just do my own thing. Today I’m wearing a mid-calf pink skirt, pink ankle socks and transparent pale pink stockings underneath. All very delicate and femme to go with my clunky brace and shoes.

It’s interesting how a leg brace can become so integrated into one’s body space that it feels like something is missing when it’s not there.

When I’m doing laboratory work the wheelchair is a major inconvenience, so I get up and limp around with the brace. Not a problem.

]]> By: Chloe http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-18311 Chloe Tue, 09 Jun 2009 23:17:13 +0000 http://transabled.org/?p=2238#comment-18311 Today was one of those rare days when I actually don a lab coat and rubber gloves to work in the laboratory. It was absolutely no problem with the KAFO, unlike the crutch which was a bitch. Seems like a wheelchair would work okay as long as the logistics were well planned. Today was one of those rare days when I actually don a lab coat and rubber gloves to work in the laboratory. It was absolutely no problem with the KAFO, unlike the crutch which was a bitch. Seems like a wheelchair would work okay as long as the logistics were well planned.

]]> By: Ada http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-18006 Ada Mon, 04 May 2009 00:43:10 +0000 http://transabled.org/?p=2238#comment-18006 Yeah, I need my left leg to be less functional than my right. I also have arthritis in my left ankle because of an old injury, and my left hip gives me problems, so I don't know if that has any affect, but I just thought I'd weigh in also :) Yeah, I need my left leg to be less functional than my right. I also have arthritis in my left ankle because of an old injury, and my left hip gives me problems, so I don’t know if that has any affect, but I just thought I’d weigh in also :)

]]> By: Brice http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-18001 Brice Sun, 03 May 2009 11:26:43 +0000 http://transabled.org/?p=2238#comment-18001 As I've said in another context, diapering or using a cath has never had the least appeal for me, but I have for years used a urinal bottle at night rather than walk to the bathroom, which I'm sure, at this stage of my life, is a by-product of the BIID thing. @Lane, I would be inclined to call what we suffer a "need" not a "desire." As I’ve said in another context, diapering or using a cath has never had the least appeal for me, but I have for years used a urinal bottle at night rather than walk to the bathroom, which I’m sure, at this stage of my life, is a by-product of the BIID thing.
@Lane, I would be inclined to call what we suffer a “need” not a “desire.”

]]> By: Lane http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17999 Lane Sun, 03 May 2009 04:58:00 +0000 http://transabled.org/?p=2238#comment-17999 Not TMI at all IMO. For those with para desires, incontinence issues (of various sorts) with naturally flow from the neurological ones that will be required to achieve the paralysis. I see this as a plus. Wearing a diaper to bed does feel great. I always sleep better and it is very convenient as well. I look at it as BIID-friendly nighttime "hardware" - even though it's really "software". I guess you do have other hardware anyway. This is yet another topic I should write about, I guess - if I EVER get in the right mental space. How do you TA-ers find the time? Not TMI at all IMO. For those with para desires, incontinence issues (of various sorts) with naturally flow from the neurological ones that will be required to achieve the paralysis. I see this as a plus.

Wearing a diaper to bed does feel great. I always sleep better and it is very convenient as well. I look at it as BIID-friendly nighttime “hardware” - even though it’s really “software”. I guess you do have other hardware anyway.

This is yet another topic I should write about, I guess - if I EVER get in the right mental space. How do you TA-ers find the time?

]]> By: Brice http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17997 Brice Sat, 02 May 2009 19:25:17 +0000 http://transabled.org/?p=2238#comment-17997 Just to add to the confusion, I need my right leg to be nonfunctional and my left not so much, but my left is shorter than my right though not dramatically, a half-inch or so. Just to add to the confusion, I need my right leg to be nonfunctional and my left not so much, but my left is shorter than my right though not dramatically, a half-inch or so.

]]> By: Tora http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17996 Tora Sat, 02 May 2009 19:17:58 +0000 http://transabled.org/?p=2238#comment-17996 i re-read your post and noticed the thing about needing your left-leg to be nonfunctional more than your right one. i'm like that too, except that it's my right leg. and i'm guessing that the fact that my right leg is shorter than my left one is a coincidence, although i can't be sure of that... i re-read your post and noticed the thing about needing your left-leg to be nonfunctional more than your right one. i’m like that too, except that it’s my right leg. and i’m guessing that the fact that my right leg is shorter than my left one is a coincidence, although i can’t be sure of that…

]]> By: Chloe http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17995 Chloe Sat, 02 May 2009 15:19:02 +0000 http://transabled.org/?p=2238#comment-17995 Thanks for the embarrassing question, Lane! ;o) On the particular morning I referred to, my diaper was wet. However, it was not because I peed myself in the night (that I'm aware of). I had been skiing the previous day, while wearing a super duper extra heavy duty reusable diaper. The most frequent time I pee myself by accident is while skiing, and not just because I sometimes piss myself with sheer fright. I had in fact peed myself by accident that day, though the quantity was not great. I decided just to keep the same diaper on that night. Almost all of my accidents are in the daytime. A diaper at night is massive overkill. It just feels right. How's that for TMI? Thanks for the embarrassing question, Lane! ;o)

On the particular morning I referred to, my diaper was wet. However, it was not because I peed myself in the night (that I’m aware of). I had been skiing the previous day, while wearing a super duper extra heavy duty reusable diaper. The most frequent time I pee myself by accident is while skiing, and not just because I sometimes piss myself with sheer fright. I had in fact peed myself by accident that day, though the quantity was not great. I decided just to keep the same diaper on that night. Almost all of my accidents are in the daytime. A diaper at night is massive overkill. It just feels right.

How’s that for TMI?

]]> By: Chloe http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17992 Chloe Sat, 02 May 2009 04:37:03 +0000 http://transabled.org/?p=2238#comment-17992 Thanks for the tips, Lane. I have bail locks, so they always lock automatically any time the leg is straightened. I've been practicing a technique of using the edge of a chair to disengage the lock when I sit down. Thanks for the tips, Lane. I have bail locks, so they always lock automatically any time the leg is straightened. I’ve been practicing a technique of using the edge of a chair to disengage the lock when I sit down.

]]> By: Lane http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17991 Lane Sat, 02 May 2009 04:19:12 +0000 http://transabled.org/?p=2238#comment-17991 Love the diaper part, too - very close to my own heart. Are you always dry in the morning? It's easier, and IMO more authentic, to change on the bed than make a questionable transfer to the toilet. Not for everyone, tho. Love the diaper part, too - very close to my own heart. Are you always dry in the morning? It’s easier, and IMO more authentic, to change on the bed than make a questionable transfer to the toilet. Not for everyone, tho.

]]> By: Lane http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17990 Lane Sat, 02 May 2009 04:13:06 +0000 http://transabled.org/?p=2238#comment-17990 Another awesome step. I love my braces. I have ball catches on the drop locks, so I can choose to lock them. When I lock them more, people make lots more comments, so I guess my experience is quite a bit different. One hint. Stay away from WD-40, 4-in-1, 5-in-1, and other lightweight oils. They are poor lubricants and will encourage galling (ie. they will cause damage over time by turning the worn bits into an abrasive). Try a liberal amount of lithium grease on any joints and mechanisms instead. Then wipe the excess off, so it doesn't get on your clothes. If the uprights get goobered up from constant daily wear, you can even use vinegar and water to clean them, and then use a tiny film of light oil to protect them again. Another awesome step. I love my braces. I have ball catches on the drop locks, so I can choose to lock them. When I lock them more, people make lots more comments, so I guess my experience is quite a bit different.

One hint. Stay away from WD-40, 4-in-1, 5-in-1, and other lightweight oils. They are poor lubricants and will encourage galling (ie. they will cause damage over time by turning the worn bits into an abrasive). Try a liberal amount of lithium grease on any joints and mechanisms instead. Then wipe the excess off, so it doesn’t get on your clothes.

If the uprights get goobered up from constant daily wear, you can even use vinegar and water to clean them, and then use a tiny film of light oil to protect them again.

]]> By: Chloe http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17989 Chloe Sat, 02 May 2009 03:59:24 +0000 http://transabled.org/?p=2238#comment-17989 At the end of the work week, as I write this little update, four co-workers have conversed with me about my leg brace. The first person commented that I looked much more comfortable with the leg brace than I did with a crutch. I had to agree with her! The other conversations were just as easy and amiable. Nobody asked for a reason. Presumably six months with a crutch makes it seem reasonable. At the end of the work week, as I write this little update, four co-workers have conversed with me about my leg brace. The first person commented that I looked much more comfortable with the leg brace than I did with a crutch. I had to agree with her! The other conversations were just as easy and amiable. Nobody asked for a reason. Presumably six months with a crutch makes it seem reasonable.

]]> By: Tora http://transabled.org/thoughts/other-thoughts/chloes-thoughts/kafo-to-work.htm/comment-page-1#comment-17986 Tora Fri, 01 May 2009 18:38:10 +0000 http://transabled.org/?p=2238#comment-17986 no, it's definitely NOT about what other people are seeing. i agree completely. i've worn bandages to school twice (asked to go to the bathroom and put them on at school... haven't done that for awhile because i get really nervous and it takes awhile to put them on while keeping my foot above the gap between the stall walls and the floor) and both times wore jeans, knee length socks, and shoes to hide them. i actually did show one person (but that was lexi and it was just to tell her why i didn't want to take my shoes off) but i felt sooo awesome all day. no, it’s definitely NOT about what other people are seeing. i agree completely. i’ve worn bandages to school twice (asked to go to the bathroom and put them on at school… haven’t done that for awhile because i get really nervous and it takes awhile to put them on while keeping my foot above the gap between the stall walls and the floor) and both times wore jeans, knee length socks, and shoes to hide them. i actually did show one person (but that was lexi and it was just to tell her why i didn’t want to take my shoes off) but i felt sooo awesome all day.

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