[Blind-rollers] New Member and Question

[qubit]

Yes I agree about not depending on others too much if you can help it. 
Especially if you have a chronic problem, they often don't show up, probably 
because they are too chicken to say no, but also don't want to get a long 
term load of work dumped on them -- and who can blame that? I also have 
advice about recruiting people to help, even if you are going to pay them --  
you have to read between the lines of what they say -- because the nicest 
people will agree to help but will have you and a million other burdens on 
them as well that they might not be telling you about. I once lost a friend 
that way (almost).  I needed a person to help me after a major accident 
while I was in school.  She accepted, but after stressing out in silence (to 
me) for several weeks, she almost had a nervous breakdown before she told me 
off for pressuring her into helping me when she was taking 19 credit hours 
and working 20 hours a week (besides working for me -- I was paying her), 
and had church and family responsibilities, and no time for her hobbies... 
No one could do that.  I stressed out a little too as she never once told me 
she was going to have a schedule like that -- she should give me a chance to 
help her by moving on to recruit someone else.  But nice people don't talk 
about their problems...

Jewel, you sound like an amazing person.  (Sorry if you don't like 
pedestals...)  I am thinking of dealing with abuse when young, then getting 
socked (literally) with some tough disabilities and going at them with such 
a good attitude.
Hope you get your guide dog issues straightened out.
I look forward to hearing about it...
Happy rolling.
--le



Anyway,



----- Original Message ----- 
From: "Jewel S." <herekittykat2 at gmail.com>
To: "Blind wheelchair users list" <blind-rollers at nfbnet.org>
Sent: Saturday, August 07, 2010 5:26 AM
Subject: Re: [Blind-rollers] New Member and Question


Hi Erica,

Thanks for the welcome and suggestions. I considered having someone
carry my stuff...I don't tink it's practical in the end because I have
learned from hard experience that the only person I can truly count on
to help me is myself. Other people will offer help often, but I have
learned time and time again that they rarely do what they say they
will, so I need to rely on myself and do things I know I can do
without help. This is my experience since I was very little, having
grown up in a dysfunctional family with an abusive mother, having been
disappointed by people time and time over the years, and still finding
myself trying to accept that people want to help, only to be let down
once again. If I let someone carry my stuff for me, what will happen
when they don't show up one day?

The only thing I have come up with that doesn't involve a wheelchair
or walker is the guide dog I plan on getting next  May/June. I plan on
going to GDF (almost done with the application, just need to get my
refrences to finish up), and they are willing to train my guide dog to
also use a balance harness. They can also train my guide dog to guide
with me from a wheelchair, which I know will be needed for short
periods of time, such as at Disney World next year. Once I have a
guide dog he/she will be mobility aid, support for balance, and
traveling companion all in one. Right now I have my white cane and my
support cane, but with a guide dog, I'll have only one hand needed for
my mobility aid, as long as they train my dog to be on my right side.
If they train him/her on my left side, I will still need a cane on the
right because I lean so far to the right that's the way I will fall
when/if I do. GDF says they are willing to train a dog to the right
side if it is necessary, and I am sure it will be necessary...what's
the point of the balance harness if I'm going to end up falling the
other way and may not have enough balance to force a lean to the left?

I have been dealing with doctors for seven years, not quite ready to
give up on them yet. But in the meantime, I am doing things on my own.
I am trying to exercise daily for about 15 to 30 minutes. I try to
keep to a low-glucose diet (easy to do with a diabetic boyfriend!) and
am trying to encorporate gluten-free meals into my diet (suggestions
from a friend with fibromyalgia who is doing incredibly well for
having had fibromyalgia for several decades). I also make sure to take
a nap every afternoon between 3:30 and 4pm, for half an hour to an
hour, depending on how I slept the night before. Like, I'll probably
take at least an hour nap today because I have slept horribly
tonight...I'm not usually up this early, really.

Have you ever used a white cane while using a wheelchair? I have heard
that the O&M is completely different. My local O&M instructor said it
is too difficult, that I couldn't do it. So I know if I were to start
using a wheelchair, I'd have to go elsewhere for O&M instruction. It
may be just the excuse I need to go to the Louisiana Center for the
Blind, which I want to go for intensive Braille classes, too (I read
50 wpm one-handed, and want to learn two-handed). I may go that route
if my doctor agrees that a motorized wheelchair would be appropriate
for me to use part-time. I guess I'm getting used to the idea,
especially since this week has all been bad days, struggling to get
out of bed and go places every day of the week. I'm used to one or two
days a week being bad days, not the whole week.

Do any of you use a wheelchair and work with a guide dog? I know one
person on the NAGDU list who is a guide dog handler and a wheelchair
user. What is that like? Does it work well for you?

~Jewel

On 8/6/10, Erica Cole <rebellion220 at hotmail.com> wrote:
> Hi Jewel.
> I too have chronic back, shoulder and hip pain, but I've found since I 
> told
> the medical profession to stuff itself (wasn't getting any support anyway)
> and got myself a wheelchair, I can get a lot more done, am not in so much
> pain and feel I can slowly get on with my life.
>
> I'm really sorry about your college woes, I used to carry a rolling case
> before I had most of my physical probs, but Ihaven't tried it recently.
> When I'm  going away, I sit in my wheelchair,  sans footrests, put the 
> case
> between my feet - handle pointed up to my chin and steer as usual - rather
> blindly in fact - with my arms on the rims.
>
> The only thing I can think of is if you can get a frien to carry your 
> things
> to enable you to concentrate on walking etc. I know its not ideal, and you
> may not even want to do that kind of thing  considering your independence,
> but that's all I can think up.
>
> Welcome to the list by the way.
> Best,
> Erica in the UK
> -----Original Message-----
> From: blind-rollers-bounces at nfbnet.org
> [mailto:blind-rollers-bounces at nfbnet.org] On Behalf Of Jewel S.
> Sent: 05 August 2010 03:38
> To: blind-rollers at nfbnet.org
> Subject: [Blind-rollers] New Member and Question
>
> Dear list,
>
> Hello everyone! My name is Jewel. I am 25 years old and live in Raleigh,
> North Carolina. I posted a question to the NABS (student
> division) list, and they suggested this list to me. If I had realized it 
> was
> here, I would have joined long ago!
>
> So, a bit about me. Before I lost my sight, I was a nanny (both live-in 
> and
> live-out). When I lost my sight due to a chemical burn (drain cleaner
> splashed in my face), I lost my job as a nanny, and private employees of
> families are not covered by the ADA. So, I decided I needed to find a new
> profession and am going back to school in the fall to become a TVI 
> (teacher
> of the visually impaired).
>
> So, like I said, I lost my vision due to a chemical burn. It was 20/70, 
> but
> then secondary glaucoma set in and brought it down to its current, which 
> is
> 3/350 in the right eye and some light perception in the left. But I'm 
> going
> to back up to discuss my physical condition, the main reason I joined this
> last after all.
>
> Ever since I can remember, I have had physical problems. I could never run
> without twisting an ankle, hurting my back, or hurting my knees. I thought 
> I
> just wasn't athletic. I was raised Catholic, and I remember as a kid
> squirming as I kneeled at the pew to make my knee crack because it would
> cramp until it cracked.
>
> In 2003, I joined the Army, but was unable to pass the physical tests for
> two reasons: my knees do not lock in place, so they wouldn't count my
> push-ups because my knees dropped a fraction of an inch every time, and I
> couldn't run...when I did the mile run, toward the end, my knee completely
> gave out and I fell on the ground. The drill sergeant of course thought I
> was being lazy and yelled at me, and I walked on a knee that wasn't 
> working
> right until the end (about a hundred yards).
> While at Fort Jackson for basic training, while still in "intake" or
> whatever, I developed tendonitis so bad I was put on a dead man's profile.
> If you know anything about the military, dead man's profile means no
> exercise, no walking, stay in bed and do nothing, and we'll bring your 
> meals
> to you. My ankles and my knees would not hold my weight, period.
>
> Ever since then, I have slowly been deteriorating. It started with my 
> right
> knee and hip and only one bad day a month approximately. Then it spread to
> my right arm and shoulder, and then to my back, then to my left shoulder,
> and now it is all over my body. It's hard to describe, though. It's like
> constant pulsing of pain in all my joints nad muscles. My muscles get so
> tense they are almost as hard as bone itself, and my joints, especially my
> elbow, shoulder, and jaw, sometimes lock. I have severe tremors at times,
> and the headaches come and go. Earaches also come and go. But my back, 
> hips,
> knees, and wrists hurt non-stop.
>
> The worst thing for me is walking. When I walk, I use my white cane and my
> support cane, but I have such poor balance that sometimes I have to use 
> both
> the support cane and my boyfriend's arm just to stay walking straight. I
> stumble, I fall, and my right foot drags to the point if there's a crack 
> in
> the sidewalk, my right foot will get stuck on it because I can't lift it
> even that little bit.
>
> My feet turn outward, and my chiropractor told me that my head is 
> literally
> on crooked. I have two slipped discs in my neck (at the top), and my 
> skull,
> because of these slipped discs, is actually on sideways, leaning to the
> left. My neck is also misshapen in that it has only an eleven degree
> curvature instead of the normal forty-five.
> My back is misaligned, my hips are off to the point that my right leg is
> made to be half an inch shorter (not really, but the hip lifts it up half 
> an
> inch more than the left side), and my wrists have bones out of place (my
> left wrist was broken when I was a kid and didn't set properly).
>
> I think worse than all of this, though, is that my condition, after seven
> years of doctors and tests and physical therapy and drugs, is still
> undiagnosed. The diagnosises have included a tonsular herniation, a chiari 
> 1
> malformation, multiple scelorosis, lupus, rheumatoid arthritis,
> osteoarthritis, chronic pain, and chronic fatigue syndrome. All of these
> have been turned down (except the general diagnosis of chronic pain and
> chronic fatigue syndrome) and the latest possibility is firbromyalgia, 
> which
> my father had in connection to Desert Storm Syndrome, so they thnk it's a
> good possibility. But seven years and no diagnosis is really getting to 
> me.
> I've been told I'm faking, I have a low pain threshold, I'm asking for
> attention, and that it's not really so bad. I've been told that nothing 
> can
> be done and that I should just live with it. I've been given Oxycodone,
> Percocet, ultracet, Rizalle (can't spell that one), prescription 
> ibuprofen,
> muscle relaxants, and pretty much anything short of morphine and
> tranquilizers. I've even gotten steroid shots and IV pain medicines.
>
> My doctor has suggested that I start using a walker or wheelchair, and I 
> am
> really pushing against it. I know it's not so bad to be a wheelchair user,
> but I want to walk...I worry that using a wheelchair will mean less and 
> less
> walking, more and more deterioration. I worry that people will be even
> harder to deal with, and that I will have to learn O&M all over again when
> it was so hard in the first place because of my memory problems and bad 
> days
> when I get completely confused, kinda like I'm in a fog. If O&M was so 
> hard
> for me when Ic ould walk, how much harder will it be when I'm in a
> wheelchair?
>
> I'm not worried about how it'll affect having a guide dog...I'm going to 
> get
> a guide dog next summer sometime hopefully, and Guide Dog Foundation has
> said that they will train my dog to work with a motorized wheelchair if 
> they
> need to, so that won't be a problem. The dog will also be trained with a
> balance harness for when I walk, because I have so much trouble with that.
>
> So, that's all about my problems...now on to the inquiry.
>
> I have two hands, of course...I have one hand for the white cane, one hand
> for the support cane, and...one hand for the rolling backpack?
> Nope. Dang it! I need a third hand. I'm not allowed to carry more than 
> about
> five pounds on my back or shoulder, so I can't carry the backpack. It wil
> lhave my laptop (5 to 7 pounds), a refreshable Braille display, an extra
> keyboard (laoptop keyboards cramp my hands badly), and a few other
> items...not books, not binders. Those stay at home. But that's going to be
> about 10 pounds minimum. Now, I've tried to pull my backpack with the hand
> that holds the cane, but I stumble and trip because I can't put enough
> weight on the support cane. I've also tried carrying it in the hand using
> the white cane, but I can't sweep the cane well and miss obstacles (I ran
> into a pole that way *blush*). I spoke to the college's disability office,
> and they did not know what to suggest. I asked the student division 
> people,
> and their suggests were to go without the backpack (need the laptop and
> can't carry it, sot hat's out) or use a wheelchair (really don't want to,
> and I don't know if I could get one anyway).
>
> So my question is, is there anyway for me to walk with two canes and a
> rolling backpack? Does anyone have any creative solutinos? I was thinking 
> a
> rope attached to the t-grip and wrapped around my wrist or forearm, but 
> that
> would put too much weight on wrist or forearm and would hurt too badly. 
> For
> the same reason, a waist harness would not work because of my back and 
> hips,
> and anything on my harness would be too much for shoulders and back. I'm
> just totally stumped here. Does anyone have suggestions?
>
> And that's the end of my ever so long e-mail...
> --
> ~Jewel
> Check out my blog about accessibility for the blind!
> Treasure Chest for the Blind: http://blindtreasurechest.blogspot.com
>
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-- 
~Jewel
Check out my blog about accessibility for the blind!
Treasure Chest for the Blind: http://blindtreasurechest.blogspot.com

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