[nagdu] Tired, depressed and discouraged

Tamara Smith-Kinney tamara.8024 at comcast.net
Sun Jun 27 20:42:52 UTC 2010


Gail!

Hang in there!  Keep safe, but do what you need to do.  I keep trying to
come up with some wisdom for you from my experience of the do-it-yourself
O&M/cane travel learning I found myself doing not so very long ago...

Only it sounds like you have it or more.  Wisdom, I mean!  And humopr and
go-get-em and, well...  You will get there.  And, yes, you will spend a lot
of time feeling tired, depressed and discouraged.  Not to mention, if you
have sense to realize what it is you're actually doing -- and I'm pretty
sure you do -- downright terrified!  All you can do with any of that is own
it, accepyt it, give yourself permission to feel it and keep deciding from
day to day that if your options are to face it or sit around the house
waiting for somebody to come to your rescue, you will face it.

Which it sounds like you already know!  You will triumph, lady!  And you
will go on!  You have my heartfelt empathy, sympathy and cheers from Oregon
--where we're still paying for an agency that just doesn't bother to provide
the services we're paying for.  In other words, for more and more people, we
might as well be in Kansas.  /grin/  Where's Toto when you need him?

Tami Smith-Kinney

-----Original Message-----
From: nagdu-bounces at nfbnet.org [mailto:nagdu-bounces at nfbnet.org] On Behalf
Of Gail
Sent: Tuesday, June 22, 2010 2:24 PM
To: nagdu at nfbnet.org
Subject: Re: [nagdu] Tired, depressed and discouraged



Where I grew up, in Southern California, I know agencies for the disabled
were pretty well organised, from what I heard and saw. But out here...?
Pffft. No such luck. Still waiting for calls from some officials who are
supposed to be in charge of training and such. 
 
In the meantime, I'm going for walks with my cane-found an old pair of wrap
around sunglasses and put black tape on the bottom. Main problem with those
is that they dont fit over my regular glasses, so I GUess that makes it even
more 'authentic'! <G> We have had a lot storms lately, so the Cane Eating
Bush at the corner of our property has a lot of cousins on and along the
sidewalk now. So the cane kept catching on those, I'd stop to figure what it
was, then fling it into the yard off the end of the cane. Of course, the
Cane Eating Bush took exception to that, and when I pulled, it pulled back,
and I dropped the cane! Good thing I heard where it hit, because it hit the
ground, but ended up a few inches off the ground....guess the bush was
getting ready for a good chew on it! 
 
I was was up till three this morning, and just woke up a while ago, so I
hope it cools down enough to go out to walk later...heat index is over 100
here. Dry heat I can handle (or used to, at least), but humidity is the
pits! Its really keeping me inside, where I cant practise as much as I would
prefer. Feels like a wet sponge over my mouth and nose. People kid us about
living in Kansas, and asking how Dorothy and all are doing. I tell them what
really killed the witch was not the bucket of water, but that she stepped
outside the nice cool castle and into a typical Kansas summer. 
 
I'm melting, I'm melting! Oh, what a world! <wry grin> 
 
Gail 
 
 
 
-------Original Message------- 
 
From: Tamara Smith-Kinney 
Date: 6/22/2010 11:27:26 AM 
To: 'NAGDU Mailing List, the National Association of Guide Dog Users' 
Subject: Re: [nagdu] Tired, depressed and discouraged 
 
Gail, 
 
Yup. Here, too. Also, living way out in the idyllic countryside leaves one 
Little to chose from and few to no options. Unless you can drive a hundred 
Miles or more or get someone to drive you if you can't drive yourself... 
Then hope you have enough energy left over for the doctor's appointment. 
Crazy. 
 
Well, I went through a lot of that with fibromyalgia, although I did have to

Come over here to Portland (where I live now, but not then) for a major eye 
Exam when I became legally blind. But at least the ophthamologist in La 
Grande didn't ignore the objective findings because he didn't like them! 
With fibro, it's all very subjective, so the doctor can arbitrarily decide 
You're not in as much pain as you say are without having to be bothered by 
Hard facts. Then charge you money for his/her expertise, of c ourse. 
 
For a doctor to ignore repeated objective test results is really something 
Else. And he's being paid by the state? And he's affecting your access to 
Tools you need to function based on his evaluation? Crazy. 
 
I wish I had something useful to offer you for a solution that will actually

Help in your real life. But when you live far far from resources, or when 
The resources that should be there aren't anymore, there's little one can do

Except for what you can do on your own. Like teach yourself O&M. /smile/ 
Been there, done that, too. Scary, ridiculously dangerous, but if your only 
Option is to stay home and if you find that unacceptable, there's nothing 
For it but to grab the white cane and go forth and conquer the stinking 
Sidewalk and hope you live crossing the street at the other end. Looking 
Back, now that I've developed those listening and other O&M skills to judge 
what's going on around me, including what's coming towards me on the big, 
Scary road, I find myself wondering what used to take me so long to cross a 
Street back then. I have stood on some curbs in La Grande -- and more in 
Bend -- listening and wondering how in heck I was supposed to figure out 
When it was safe. Then finally running across the street waving my cane 
Wildly because I was sure I was going to die. Then being really embarrassed 
When I got to the other side. /lol/ 
 
I do like your humor and attitude. If you can see the ridiculousness of it 
All and laugh at yourself as you go along, you will manage to get through 
It. Hang in there! 
 
Tami Smith-Kinney 
 
-----Original Message----- 
From: nagdu-bounces at nfbnet.org [mailto:nagdu-bounces at nfbnet.org] On Behalf 
Of Gail 
Sent: Friday, June 18, 2010 5:19 PM 
To: nagdu at nfbnet.org 
Subject: Re: [nagdu] Tired, depressed and discouraged 
 
I'm certain they are on a par with voodoo and witch doctors! I know, because

living as we do below the poverty level, that quality of doctors accessible 
to me is the worst. I learned long ago to do a lot of the backwork myself, 
to figure out what the possible DXes might be, and only then go to the 
doctor. Having that info presented to them, along with the symptoms, has 
been the only way I've been able to get anything taken care of! 
 
Gail 
 
 
 
-------Original Message------- 
 
From: Sherri 
Date: 6/18/2010 6:51:11 PM 
To: NAGDU Mailing List, the National Association of Guide Dog Users 
Subject: Re: [nagdu] Tired, depressed and discouraged 
 
Hi Gail, 
 
I'm sorry you are having so many problems with your doctor. I can certainly 
Identify! They just don't understand how expensive things are. After over 30

 
Years as a medical transcriptionist, I have concluded that much of what they

 
Do is guess work. Hang in there and best of luck! 
----- Original Message ----- 
From: "Gail" <deerskin at oct.net> 
To: <nagdu at nfbnet.org> 
Sent: Friday, June 18, 2010 6:58 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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