Re: Ladies and Gentlemen: We have ACTION!

[Guest guest]

At 11:26 PM 10/3/2005 +0000, you wrote:

>Well, I guess we must have made someone in the GIs office angry or

>upset because just got a phonecall from Dr. Yusef. He said

>that he had 3 or 4 messages from us and said he sounded a

>little put off. (We only called twice: once for me and once for

>.)

>

>Dr. Yusef is writing the note for Max and will fax it to us tonight.

>He is also calling in the prescription for Zelnorm. He was a bit

>miffed at us because he said that he wanted to talk to us on Tuesday

>or Wednesday to decide about the Zelnorm, but said there has

>been no change at all in Max's health, so he wants to start tomorrow.

>

>Why is it that we have to get so angry and upset before these people

>listen to us? I am so unhappy and stressed over this. I've been

>cooking all afternoon/evening for the holiday (with all of the dirty

>dishes to clean as a result) and I cooked all day yesterday. My son

>is sick. I have a few people coming over for a holiday dinner

>tomorrow afternoon. I KNOW what I am talking about. I'm an

>intelligent human being. I've been advocating for my son for

>SEVENTEEN years. Egos get in the way.

Sigh, I've run into egos lately, too. It seems like mothers of special

needs children should be able to write up extensive resumes listing all the

things we learn OJT. Yet I suppose the best gifts we can give our children

are sometimes the least appreciated by society.

Inga

>

>I hope this new med works. We are running out of ideas.

>

>Jodi Z

>

>

>

>

>

>

>

[Guest guest]

Jodi - I'm sorry you had to go through all that. You know, I can't

answer your question about why - but, I can certainly agree with

your " ego " comment. Maybe having a good sit-down talk with Dr. Rosh

for future concerns would be a good idea - to express your progress -

or lack-thereof at times and how things might be handled in the

future when his associates prefer not to coordinate efforts with his

treatment plan ?!?

But, for now - try to enjoy the holiday. What is it that you are

cooking? Anything you would like to share? <grin>. Always open to

secret recipes!

Hugs to you Jodi.

- H

> Well, I guess we must have made someone in the GIs office angry or

> upset because just got a phonecall from Dr. Yusef. He

said

> that he had 3 or 4 messages from us and said he sounded a

> little put off. (We only called twice: once for me and once for

> .)

>

> Dr. Yusef is writing the note for Max and will fax it to us

tonight.

> He is also calling in the prescription for Zelnorm. He was a bit

> miffed at us because he said that he wanted to talk to us on

Tuesday

> or Wednesday to decide about the Zelnorm, but said there

has

> been no change at all in Max's health, so he wants to start

tomorrow.

>

> Why is it that we have to get so angry and upset before these

people

> listen to us? I am so unhappy and stressed over this. I've been

> cooking all afternoon/evening for the holiday (with all of the

dirty

> dishes to clean as a result) and I cooked all day yesterday. My

son

> is sick. I have a few people coming over for a holiday dinner

> tomorrow afternoon. I KNOW what I am talking about. I'm an

> intelligent human being. I've been advocating for my son for

> SEVENTEEN years. Egos get in the way.

>

> I hope this new med works. We are running out of ideas.

>

> Jodi Z

[Guest guest]

hey jodi!!

i will keep my fingers crossed for max that it will work!! try to

enjoy your holiday dinner tomorrow!!

jodie c

[Guest guest]

Thanks, . Yes, it's a Jewish holiday: Rosh Hashanah - the

Jewish New Year. It's a time for celebration and reflection. We've

done enough reflection. Now it's time to celebrate!

Jodi Z

[Guest guest]

Inga,

Not only are they not appreciated by society, they are not appreciated

by the doctors. I am so disillusioned by our GI team. They have been

so supportive in the past. Something has happened over there. I'm

told that insurance companies are to blame, but I think that's just a

lame excuse. Especially when dealing with children.

Jodi Z

[Guest guest]

Sigh, it's too bad they can't have more empathy and adept decision-making

in such a stressful case. Maybe they are overloaded and have some kind of

group burn-out problem? Whatever, I hope either they change or you can get

some new GI input soon, either a new member to their team or a switch. I

suppose that Max will be getting out of pediatrics shortly - maybe you

could start looking for an adult GI to be ready? Hey, the RSS-adults list

might be able to help with that one...

Inga

At 02:13 AM 10/4/2005 +0000, you wrote:

>Inga,

>

>Not only are they not appreciated by society, they are not appreciated

>by the doctors. I am so disillusioned by our GI team. They have been

>so supportive in the past. Something has happened over there. I'm

>told that insurance companies are to blame, but I think that's just a

>lame excuse. Especially when dealing with children.

>

>Jodi Z

>

>

>

>

>

>

>

[Guest guest]

Oops, I didn't read on beofre I posted to you this last time.

YES! I am so glad you finally got some results. And screw that

doctor for sounding " put off " and being miffed. Tell them to try to

deal with what you are dealing with! Good for you guys. Way to be

persistent. Arrogance is such a terrible trait for these doctors to

have. Egos! You said it baby! SCREW THEM!

Jodi R.

> Well, I guess we must have made someone in the GIs office angry or

> upset because just got a phonecall from Dr. Yusef. He said

> that he had 3 or 4 messages from us and said he sounded a

> little put off. (We only called twice: once for me and once for

> .)

>

> Dr. Yusef is writing the note for Max and will fax it to us

tonight.

> He is also calling in the prescription for Zelnorm. He was a bit

> miffed at us because he said that he wanted to talk to us on

Tuesday

> or Wednesday to decide about the Zelnorm, but said there

has

> been no change at all in Max's health, so he wants to start

tomorrow.

>

> Why is it that we have to get so angry and upset before these

people

> listen to us? I am so unhappy and stressed over this. I've been

> cooking all afternoon/evening for the holiday (with all of the

dirty

> dishes to clean as a result) and I cooked all day yesterday. My

son

> is sick. I have a few people coming over for a holiday dinner

> tomorrow afternoon. I KNOW what I am talking about. I'm an

> intelligent human being. I've been advocating for my son for

> SEVENTEEN years. Egos get in the way.

>

> I hope this new med works. We are running out of ideas.

>

> Jodi Z