State Of The Ricky

[jeshyr]

This week has had many positives and negatives:

+ Met a net.friend for the first time on Monday and we got on fabulously and had a brilliant time! I hope to spend lots more time with her, both our health statuses permitting.

+ Had a very productive appointment with a new orthotist (brace/splint person) who was extremely experienced and very knowledgable in relevant things.

+ New orthotist thinks he can manage to brace up my ankles so I can walk without ankle pain and also fixed up my wrist brace where it was rubbing skin off my thumb. AND he's going to apply for the state funding program to pay for the quite expensive ankle braces (dynamic AFOs) which is great.

- In stark contrast to the above appointment, the day after that I had a very useless and frustrating medical appointment with the allergist at the public hospital. The appointment involved FIVE HOURS extra useless waiting for various things (actual time of things happening, including travelling both ways, was about an hour and a half, so I was out of the house for six and a half hours) and after all that I mostly got "keep doing what you're doing with no changes" although I thought I was fairly clear about the things that I wasn't happy about. Very disappointing.

+ But my new wheelchair has finally arrived! It's minus one small hook on the back, as the seating place lost it, but it'll be easy to screw in once it arrives here - they already drilled the screw holes and such. New wheelchair is WONDERFUL and will merit it's own post I suspect once I've got used to it - it does need reprogramming because the joystick response is very delayed at the moment, the opposite of how I like it, but that's happening on Wednesday. Sweet Christmas gift!

- Following allllll the above excitement I am so overtired and low on energy that it's not funny. Trying hard to rest up before CHristmas so I can enjoy it.

- Also migrainey, probably because I'm so overtired.

Comments

[jesse_the_k]

Sleep well. I can hear the new chair calling you. Ricky! Come play with me! Come learn how my joystick operates by knocking the trim off doorways and imprinted footprints in the plaster!

[jeshyr]

Have already knocked off my first bit of trim, it's definitely calling me :)

[feyandstrange]

Yay for new braces and POWERCHAIR!!

Which reminds me I oughta put Christmas lights on mine. :)

[jeshyr]

Ohh, if you put christmas lights I want photos!

So hard to explain to able-bodied people how it can be a relief to hear "you need AFOs" but so obvious to disabled people who have been through the whole thing of not having sufficient aids/equipment/bracing/etc. I am quite excited that my ankles may actually stop hurting!

[feyandstrange]

Yeah, I got a lot of that when I first earned my wheels. But anybody who saw me zooming in circles around them yelling "Wheee! Check this out, I can get stuff done now! Vroom!" was pretty quickly disabused of that notion. ;) Phrasing it as "Guess what, I'm gonna be able to do more now!" might help too.

I have some EL wire that's meant to go on my wheelchair for ages, and my quad cane is covered in battery-powered lights, but the batteries died and I have been lazy.

[jeshyr]

Oh wow, had not heard of El Wire before - looks like huge lots of fun!

My chair has some strip lights along the bottom for night time but that's all in the way of decorations. I've gone more for the black and elegant look this time :)

[acelightning]

EL wire is incredibly fun to work with! a few years ago i participated in a dance party where people were encouraged to dress up as if it were their high school prom - or maybe the prom they never had. i got a metal tiara that was mostly curlicues, and outlined every curlicue in purple EL wire - i wanted to replace the "gems" with LEDs, but the EL stuff used up all my money. the visual effect in a mostly-darkened dance hall was stunning, though! the only problem with EL wire (and flat panels, and the other forms it comes in) is that it requires high-frequency current to drive it. the battery pack powers an inverter... but, unfortunately, the inverter emits a faint high-pitched buzzing or humming noise. most people can't even hear it, but it bothered me quite a bit when i was wearing the power unit for the tiara concealed in my hair :-(

[jeshyr]

I saw that - unfortunately I'm very good at hearing those high pitched noises too so I'll stick with the LEDs until they come up with something else!

[acelightning]

i think that putting the inverter underneath the chair, or in the battery compartment, or someplace like that (i've never actually examined how a powered chair is built) would probably be enough to block the sound. the visual effect really is gorgeous.

you can get somewhat similar visual effects, although not the continuous "neon" look, with fiber-optics and other acrylic (hi, sheramil!) products. and LEDs make very good light sources for such projects.

(dammit, i wish i had a transporter, so i could come to your house, examine your chair, discuss decorations with you, then build and install them!)

[jeshyr]

Hmmm .... If you google "Q6 Edge" that's the power base I have. The seat on mine is not the same but it sits on the base in the same way. I have power tilt and power legs too. Not sure how many of the blueprints are online but it's basically "full up" inside so it's just the outside where we could really put harness etc.

I have a 12 volt point available - it already has switches for some LED strip lights underneath (blue/white colour), the power recline built into the seat itself, and for a charging/plug port which has 2 USB and 2 cigarette lighter ports. The harness (wires) for this has been carefully added by an auto electrician and is finished off very nicely with everything you can imagine carefully sealed and taped and mounted - he did good. And also it's an easy spot from which we could run more power if needed. The whole additional system has an on/off switch so that if I'm not using any of those "extra" things I can isolate it so the transformer (?) doesn't drain the battery.

Want some tech-oriented photos??

[acelightning]

wow - that's very convenient, having a 12V source available like that. since a lot of EL stuff is marketed for decorating cars, it would be very easy.

yes, i'd love some photos (and links to technical drawings, if you have them) of your chair! although if i were to build some sort of decorations, someone would still have to attach them to the chair in an appropriate manner (beginning with glue). i could probably provide instructions for sheramil to follow ;-)
(but of course i'd really rather come visit and do it myself!)

some years ago, there was a fad for putting neon lighting underneath cars, so that the vehicle appeared to be floating on a glowing, colored force-field - the effect was especially striking on wet pavement. i think a lot of states made it illegal, though, because i stopped seeing it on the roads. (they probably consider it "too distracting" for other drivers.) yes, i wanted a purple force-field for my car then!

[acelightning]

*hugs*
sending you strength and energy...

[jeshyr]

Thanks but please don't actually send this energy in the form of a lightning bolt ;)

Sleeping all afternoon helped a bit, going to sleep more now.

[acelightning]

it'll be a slow-motion lightning bolt when it reaches you - recharging your batteries, not zapping you suddenly :-)

[jeshyr]

Well that's OK then! ;)

[kitsune]

What is it with allergists? I don't think I've ever heard someone, PWC or otherwise, come away talking about how friendly or helpful they were...

Glad the orthotist was so helpful, though. And hope the new chair is all you hope for!

[jeshyr]

Allergist was OK the first 3 visits, and was not actually bad this visit but more "meh". The thing that made it bad was the huge huge contrast with the previous day's orthotist visit and the fact that evvvvveerything was running so very late :/

[kitsune]

Well, that's something. But I'd argue that "Okay" and "not actually bad" are still damning with faint praise... *grin*

And yeah, the wait sounds awful. I hope it didn't throw off your energy levels too badly, though I did read your final point, and I sympathise all too well.

[jeshyr]

Good point about the damming with faint praise! Although I'm sure you're aware just as much as me about how many doctors don't meet that pathetic standard, so I figured that distinguishing between "meh" and "actively harmful" was important!

It is pathetic though, yeah.

[sheramil]

thinks he can manage to brace up my ankles so I can walk without ankle pain


exoskeleton.

"You knows it!" - Skwizgaar Skwigelf

[jeshyr]

Yup.

Or exomusculature perhaps? It's my muscles it's making up for, not my bones!

[sheramil]

i think you need both, to avoid the exomyoelectrothingies causing dreadful injuries when they super-flex so you can lift that car that's blocking Ani's view of the lemon tree.

also:

http://www.youtube.com/watch?v=P2OksmJthZc&feature=related

[jeshyr]

Good point. I wonder how much science/engineering advancement these days is based on "I want ___ just like in the movies / on TV"??

[cedar51.livejournal.com]

ups and downs of life...doesn't matter what you do or the time of the year, life happens.

and yes a few days rest should be order of the day for next w/ends festivities :-)

hugs