[Blind-rollers] New Member and Question

Sat Aug 7 02:15:16 UTC 2010

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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