[Blind-rollers] New Member and Question

[qubit]

Greetings Jewel --
Wow! I was out of town when you sent this or I would have responded sooner! 
At least it's in the same month...*smile*
The first thing I was going to ask was whether you have MS, but no, you say 
that was ruled out.  I'm sorry you are having so much trouble.  I have a 
question -- could the chemical burn have something to do with poisoning in 
your body? Stuff like that can get into the bloodstream from the skin.  Just 
a thought.

But I have another question for you: Was the damage to your eyes only to the 
corneas? You still have your eyes, do you not? The reason I ask is because I 
just received a forwarded article from a friend about a new synthetic cornea 
that obviates the need for a donor for corneal transplants and solves the 
rejection problem.  I myself am blind because of a damaged and inoperable 
cornea.  When I read that article I felt like jumping up and down and 
singing!  The article says that early successes look possitive and that the 
corneas will be generally available probably in 5 years.  I guess I can wait 
another 5 years...*smile*

Anyway, if anyone wants me to forward the full text of the article, let me 
know and I'll grab it.

As to your question about juggling canes and walking, I think you are wise 
in trying to remain active.  I have a bone condition that puts me in a 
chair.  I used to walk but since I fracture easily I am no longer able to 
walk -- that doesn't mean I couldn't take a few steps in a pinch, but it 
would be extremely dangerous.  Moreover, even an athlete, if confined to bed 
for 6 weeks, will lose 20% of his bone mass.  I have to work all the time to 
keep up a tolerable amount of mobility. It's a pain, but hey, I've been 
fracture free for several years now and doing well.  I have never been as 
active as you say you were when in the army however -- I grew up breaking 
bones all the time.
When did you strange symptoms start?

Sorry for all the questions.  You sound like one of those "Mystery 
Diagnosis" cases on the Discovery Health channel.

Anyway, good luck to you! and keep on rollin!
--le

----- Original Message ----- 
From: "Jewel S." <herekittykat2 at gmail.com>
To: <blind-rollers at nfbnet.org>
Sent: Wednesday, August 04, 2010 9:37 PM
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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