They don't really want to know ...


Posted by Moderator-JB , Jul 23,2001,00:38   Archive
Comments others make about your eye problem:

When I was working I got many different reactions. Perhaps you can relate.

1. What's wrong with your eyes?

2. Are they better?

3. Why aren't the shots fixing it?

4. One fellow after asking how they were doing a few times actually acted as if he was mad at me when I said, they won't be getting better. He avoided me after that.

5. After I'd taken off my dark glasses to apply some drops a co-worker happily said: 'this is the first time I've seen those pretty green eyes in a long time.'

6. What are you a space cadet or something? (Comment as to my wearing dark glasses in a multi-office meeting.)

7. Do those dark glasses give you x-ray vision or something?

8. I'm sure there will be a cure soon.

9. I actually felt as if I'd suddenly become invisible to many people.

The public generally can't handle different. They don't know what to say. If you try to explain and you notice their eyes glazing over, you've said too much.

Judy




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Re: They don't really want to know ...

Re : They don't really want to know ... --- Moderator-JB
Posted by Kelly Saffell , Jul 23,2001,09:43 Top of Thread Archive
I was working out a few months ago and all of the olyptical trainers were in use so I waited. One of my long time friends was there and suggested I just use a treadmill instead. I told her I couldn't because my eyes close and I almost fell off. She started laughing until she realized I was serious and not just playing around. Some people just don't understand.



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Re: They don't really want to know ...

Re : Re: They don't really want to know ... --- Kelly Saffell
Posted by kathy , Jul 23,2001,11:08 Top of Thread Archive
it's as Judy said. They really don't want to understand.



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Re: They don't really want to know ...

Re : Re: They don't really want to know ... --- Kelly Saffell
Posted by Joann Humphrey , Jul 23,2001,11:17 Top of Thread Archive
I agree they have a hard time understanding. They keep telling me to go yo the Mayo clinic, but all the drs. I've seen so far & from reading the bb, I feel the next step is the conference, & then will decide my next step, whether it be surgery, get into a research project, or just continue with botox & clonasazpam. Friends think there should be a permanent solution & I wish that were true. Maybe someday. Let's hope & pray. Joann in ARK



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Re: They don't really want to know ...

Re : Re: They don't really want to know ... --- Joann Humphrey
Posted by kathy , Jul 23,2001,11:24 Top of Thread Archive
has anyone any information on this Doxil BEB Treatment Trial?? it is something i might consider. it seems to be quite promising.



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Re: Doxil Site.

Re : Re: They don't really want to know ... --- kathy
Posted by Shirley-Arkansas-USA , Jul 23,2001,12:46 Top of Thread Archive

Kathy, the link for the website for the Doxil trials is attached below. It is in the BEBRF Main Pages. You pay your own expenses. It is basically a chemical myectomy and permanently destroys the muscles injected over time. They are still working on dosages and there is a severe red discoloration that occurs with the redness that lasts for some time.(months).
I wish somebody was on the bulletin board that was or has participated in the trials.
It will probably be mentioned at the conference again this year.

http://www.med.umn.edu/ophthalmology/dbnews.html

Shirley in AR.




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Re: Doxil Site.

Re : Re: Doxil Site. --- Shirley-Arkansas-USA
Posted by kathy , Jul 25,2001,17:34 Top of Thread Archive
i know , i have this information. i really wish someone on this board knew or had participated in it also, so we could ask some questions. i'll post a question tomorrow. i'm too tired now.



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Re: They don't really want to know ...

Re : They don't really want to know ... --- Moderator-JB
Posted by Billie Lowe (billie lowe,Billie Lowe), Jul 23,2001,19:29 Top of Thread Archive
I try not to let it get to me when people don't act like they care about what is wrong with my eyes & don't really want to hear about it for over 2 sentences. I try to let it be a lesson for me to be more sensitive to other people's conditions & problems. It's something I'm working on.
Billie



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Re: They don't really want to know ...

Re : They don't really want to know ... --- Moderator-JB
Posted by Sally - in - Idaho , Jul 23,2001,22:23 Top of Thread Archive
All the above are so very true, and I'm finding that it even carries through with the medical people. Today, I saw my primary care physician and he appeared to not be rushed and wanting to visit a bit. He asked how my eyes are doing and I thought he actually might care. However, when I began explaining the problems I'm having ... here came the glazed, bored look.

Then he told me that I just have to get out and walk because of my high blood pressure and diabetes. I had just explained to him that I lose balance in open spaces. So he said I should just walk on thesidewalk around my block. I said, "What sidewalk?" My town has no such amenities, just gravel or some asphalt. He looked unbelieving and told me to go walk in the park. Dried up place, uneven ground, no way. I am trying very hard to keep from falling down and adding to my problems. I know I need exercise and I cannot afford the membership to a very nice wellness center just six miles away, and I don't have Indian blood to help with the expense.

So I try to keep a low profile and avoid questions and suggestions.

Sally in North Idaho who got very irritated with a lazy clerk in Office Depot today who would not take me directly to a document desk holder. She pointed in the general direction and said she "thought" it might be aisle 7. Then she folded her arms and went back to chewing her gum and being bored.




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Physicians too ...

Re : Re: They don't really want to know ... --- Sally - in - Idaho
Posted by Moderator-JB , Jul 24,2001,11:02 Top of Thread Archive
Sally:

Doctor's are certainly not immune to the glazed look. My Neuro did the same thing when I called and went in to show him how my hand was in the midst of a dystonic dance. His comment - 'Well you didn't need to come in to show me!'

Perhaps I've forgotten, what DO we pay them for!!!!!

By the way, since I've been bloodletting while trimming my roses lately, I'll bottle some and label it '1/4 Cherokee' if that will help you qualify for the fitness center :)

Send some more sun over to this side of the mountains,

Judy

--modified by Moderator-JB at Tue, Jul 24, 2001, 11:03:50




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Re: Physicians too .../Thanks for Indian blood offer

Re : Physicians too ... --- Moderator-JB
Posted by Sally - in - Idaho , Jul 24,2001,15:29 Top of Thread Archive
Hi Judy,

Thanks for the offer of Cherokee blood! Years ago, one of my friends and I poked our fingers and exchanged a drop of blood, but she now tells me that won't qualify me to get on the roll!!! Oh well.

Sometimes it's hard to remember what the men in white coats do get paid for. I received such sad news yesterday when my doctor's nurse of 9 1/2 years told me she was leaving. I had known they weren't seeing eye-to-eye for sometime. She is such an important part of his practice and were she going with another physician, it would be tempting to consider changing!

I'd love to send more sunshine your way. At least there is a steady breeze today keeping us a bit cooler. I guess we have to take some ugly with beauty ... hence, the rose thorns.

Take care.

Sally in North Idaho who would love to have some rose bushes




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Re: Physicians too .../Thanks for Indian blood offer

Re : Re: Physicians too .../Thanks for Indian blood offer --- Sally - in - Idaho
Posted by kathy , Jul 25,2001,17:30 Top of Thread Archive
sally you can get many many kinds of miniature roses that are exquisite and grow well in a clay pot. you just put them outside your doorstep in all summer long and overwinter them inside.



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Re: They don't really want to know ...

Re : They don't really want to know ... --- Moderator-JB
Posted by Billie Lowe (billie lowe,Billie Lowe), Jul 24,2001,09:01 Top of Thread Archive
This is something I said to a man at church one day when I was trying to explain about my eyes, because it's hard to tell someone that there is nothing wrong with your vision. I said close your eyes, he did, and I said now what do you see? He said he couldn't see anything, but anytime anyone closes their eyes they can't see anything. And I said exactaly, that is why I can't see, my eyelids spasm shut and I can't see through them. There is nothing wrong with my vision. I know that is hard to understand.
Billie in Kansas where it is going to be hot again today, they are saying there is a possibility of rain we'll see.



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Another example ...

Re : Re: They don't really want to know ... --- Billie Lowe
Posted by Moderator-JB , Jul 24,2001,11:08 Top of Thread Archive
Billie:

Good example!

Another one that makes people understand is to ask them what happens when they come out of a movie theatre into bright sunlight. Their eyes squint like ours.

Judy




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