[nagdu] Tired, depressed and discouraged

Tue Jun 22 21:58:01 UTC 2010

Tami,

I guess I have never been in the position of depending on a doctor's 
determination of legal blindness to get the services I've needed.  I've been 
quite a lot blind for quite some time. *smile*  Also here in NE the state vr 
agency uses a functional definition of blindness, not a specific number on a 
test.  So there are clients who don't meet the definition of legal blindness 
that still receive services.  I take for granted how fortunate I am to live 
in a place that has such excellent blindness services.  I forget sometimes 
that services are hard to come by in other places.

Julie

----- Original Message ----- 
From: "Tamara Smith-Kinney" <tamara.8024 at comcast.net>
To: "'NAGDU Mailing List,the National Association of Guide Dog Users'" 
<nagdu at nfbnet.org>
Sent: Tuesday, June 22, 2010 11:19 AM
Subject: Re: [nagdu] Tired, depressed and discouraged

> Jlie,
>
> Could it be that easy?  I guess in trying to figure out a useful reply to
> Gail, I'm remembering back to when I was first legally blind, when that
> determination affected access to state resources and social security.  And
> further back to when getting diagnosed as disabled for Social Security 
> with
> fibromyalgia was impossible, no matter how many doctor's appontments you
> went to.  By the time I became legally blind, there were starting to be
> meaningful treatments for that, if you could afford them and push yourself
> through the long recovery process.  It wasn't until I finally realized I
> would have to leave my marriage and put in for SSD due to legal blindness
> that I discovered you can now get SSD for disability due to fibromyalgia.
> /smile/  By that time, I was nearly into remission, so it seemed ironic.
> Then, of course, I went to the Living Skills center, and am now working my
> way back into remission for a new onset.  Not such an entertaining irony,
> that one.
>
> Anyway, I will be interested to find out if the guide dog programs will go
> with the eye doctor's objective findings even if he refuses to certify 
> legal
> blindness based on them.  I've met a few people in that gray area where
> they're too blind to function without adaptive tools, but they don't have
> access to resources because they can't get certified as legally blind.  So
> they face quite a struggle there.  Ugh!
>
> Tami Smith-Kinney
>
> -----Original Message-----
> From: nagdu-bounces at nfbnet.org [mailto:nagdu-bounces at nfbnet.org] On Behalf
> Of Julie J
> Sent: Saturday, June 19, 2010 1:54 PM
> To: NAGDU Mailing List,the National Association of Guide Dog Users
> Subject: Re: [nagdu] Tired, depressed and discouraged
>
> Gail,
>
> I'm confused.  It is up to you what test and medical procedures you
> participate in.  The doctor can offer his opinions and his 
> recommendations,
> but it is up to you as to what to do about them.  If you aren't 
> comfortable
> with something, ask for more info or just say no.
>
> I guess I don't understand why you are going through all these tests and
> doctors appointments.  If it's just to get a guide dog, I'd stop.  You 
> have
> taken 3 visual fields tests, which should be enough for any of the guide 
> dog
>
> programs to review and consider.
>
> If the doctor thinks something neurological is causing your vision loss,
> then that would be an entirely different situation.  I do know that in 
> many
> states there is transportation to medical appointments available through
> Medicaid.
>
> Hope you can get it sorted out,
> Julie
>
>
>
>
>
>
> ----- Original Message ----- 
> From: "Gail" <deerskin at oct.net>
> To: <nagdu at nfbnet.org>
> Sent: Friday, June 18, 2010 5:58 PM
> Subject: [nagdu] Tired, depressed and discouraged
>
>
>>
>> Well, we got back a little while ago, and I dont know what to think or 
>> do.
>> The doc ran the Humphries *again* (third time now), and got the same kind
>> of
>>
>> Results. He just cant figure why-or accept- I see the dots around that
>> Central light, and miss the others. It doesnt matter that I tell him 
>> 1)its
>> Hard to sit there staring at that tiny yellow dot *and* catch all the
>> white
>> Dots. 2) its hard to keep my concentration from wandering now and then, 
>> so
>> That makes me lose some of them. 3) I see them, but I always click fast
>> Enough to catch one before another pops up.4) some I miss just because I
>> Have things floating in my eyes becaue of being tired or headache, so
>> those
>> Can distract or cover dots.
>>
>> So, now he seems to have backed out of the Dxs he had given me before, 
>> and
>> Now wants me to have an MRI and go to Kansas City- a drive of over 100
>> miles
>>
>> One way- to see a neuro there. I'm so tired and depressed that I cant
>> Remember any more of what he said. But that trip will be expensive for
>> us-we
>> have been married 20 years, and have never been able to afford to go to 
>> KC
>> for anything other than to the airport to pick up someone-exhausting for
>> me,
>> and I'm supposed to go there and be in one piece for more testing?! This
>> is
>> getting weirder every time we go to this guy, but he keeps saying he has
>> to
>> have this done. Yeah, like he said today's Humphries would be the 
>> definite
>> test....
>>
>>
>> But when three tests have the same results, of the visual field being the
>> Same, why cant he accept that I have problems/legally blind, and we take
>> Care of the KC trip some other time? This guy is driving me nuts, with 
>> his
>> Inability to stick with one dx or accept what tests show him.... And with
>> not even the dx he gave me 2 weeks ago, I'm toast.
>>
>> Gail
>>
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>
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