[nagdu] Tired, depressed and discouraged

Tue Jun 22 16:19:05 UTC 2010

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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