Re: Attached E-mail that I received

[Guest guest]

Fully agree with as I too have had very rude and unpleasant email from people who dislike me being a member of this group. They know who they are and I have no further comment to make about them as it would lower me to their level.

All I hope is that Chet gets a diagnosis soon.

Plymouth UK

[Guest guest]

To and fellow "A's":

KEEP POSTING...If someone out there doesn't want to read your/our postings, they can always hit the DELETE button!!!

The way I look at it, INFORMATION IS KNOWLEDGE, and you can always learn something from the postings, if you keep an open mind.

Yes, I agree, the person who sent the email without a name is a real COWARD!!!

Warmest Regards,

Joanne

[Guest guest]

WELL! As Charlie Brown would say... " OH, GOOD GRIEF!! " I for one vote that

can do research and post thought provoking questions for me ANYDAY! And

I'm not even her relative. Just when you think you feel safe somewhere, some

chicken with an anonymous post tries to knock you down. I commend you , as

being a devoted, intelligent, persistent spouse, and your husband who maybe has

A, maybe has pseudoA, maybe has something else altogether is very lucky to have

you. You HAVE found many friends here, and I,for one, hope that you stick

around for as long as you feel the need to. Hope you get your answers soon. Who

knows, there may be other people who find their way into this group who might

need to question if their symptoms that don't check out QUITE like A might

actually be pseudo A and they and their doctor might not know what pseudoA is or

even think about it. You have done a great job of explaining pseudo A for all.

You're a nice person with a good heart and you just need help. I hope you find

it soon. Have a nice day with Chet, .

in Houston

> Hi All! I am not sure if I have made someone from this board mad,

> but I received the following e-mail this morning - I pasted it here -

> there were no names, but I think that I may be upsetting someone

> here:

>

> Are you the person who is supposedly fit and well who wants to mix

> with those who aren't. A person who has a family and whose relative

> who is sick never says a word about their condition or tries to

> discuss it with others. If a person hasn't got a diagnosis why do

> their relatives need to research a condition they haven't got?

> Don't most other people find something else to do like playing with

> their children or a new hobby? Surely this is seen as more of a

> normal preoccupation than constantly posting email?

>

>

>

> I am not trying to upset anyone by posting here - I felt that this

> would be a great place to receive a wealth of information. My

> husband may not post here, but he reads everything. What my husband

> is going through is very real.

>

>

[Guest guest]

At 03:06 PM 1/11/2003 +0000, Chet & <chetjet3@...> wrote:

>Hi All! I am not sure if I have made someone from this board mad,

>but I received the following e-mail this morning - I pasted it here -

> there were no names, but I think that I may be upsetting someone

>here:

Hello, .

You may not have A but you do suffer because of it, maybe even more so than

some of us with A suffer. I see tears in my wife's eyes sometimes when I am

having trouble with A and I know in those moments she is hurting more than

I am. You need to find help for A as much or as Chet does. I think you and

all the A family members are very welcome, and I have enjoy your message

and the chance to help you.

As to the nut case that sent that message, it seems to be the hobby of nut

cases to invent silly rules and expectations for how others should live

their lives. Anyone that has ever spent time around a nut case knows what I

am saying.

To the nut case: LIVE YOUR OWN LIFE, KEEP YOUR RULES TO YOURSELF.

Sorry about the caps. I almost never do that. Got a little emotional there.

I guess I have had to deal with to many nut cases.

notan

[Guest guest]

I too drink lots of milk I put things in it carnation instant breakfast Or anything else to give it a different taste or more nutrients I drink whole milk First skim milk I thought whole wasn't good for me But I didn't like the taste SOOOOOOOOO What the h------- whole it is Hey a girls got to do what a girl has to do

Attached E-mail that I received

Hi All! I am not sure if I have made someone from this board mad, but I received the following e-mail this morning - I pasted it here -there were no names, but I think that I may be upsetting someone here:Are you the person who is supposedly fit and well who wants to mix with those who aren't. A person who has a family and whose relative who is sick never says a word about their condition or tries to discuss it with others. If a person hasn't got a diagnosis why do their relatives need to research a condition they haven't got?Don't most other people find something else to do like playing with their children or a new hobby? Surely this is seen as more of a normal preoccupation than constantly posting email? I am not trying to upset anyone by posting here - I felt that this would be a great place to receive a wealth of information. My husband may not post here, but he reads everything. What my husband is going through is very real.

[Guest guest]

: I echo everyone's supportive comments to you. You are actively trying to help your husband, probably the most loving thing you could do for him, and I think the person who wrote you is the one who needs to get a life. My husband was my rock while I was suffering and during recovery. I myself started researching the condition the minute the A word was mentioned. I didn't have the diagnosis confirmed for another six weeks, but by then I knew so much about the disease and treatment options that I felt a lot more comfortable discussing surgery, etc. than I would have otherwise. Of course, I had a lot of time to research - I was off work those whole six weeks because I was so weak by then that I couldn't work. Anyway, you keep on researching and posting, sister!! And my prayers are with you and your husband, and your family. Attached E-mail that I received Hi All! I am not sure if I have made someone from this board mad, but I received the following e-mail this morning - I pasted it here -there were no names, but I think that I may be upsetting someone here:Are you the person who is supposedly fit and well who wants to mix with those who aren't. A person who has a family and whose relative who is sick never says a word about their condition or tries to discuss it with others. If a person hasn't got a diagnosis why do their relatives need to research a condition they haven't got?Don't most other people find something else to do like playing with their children or a new hobby? Surely this is seen as more of a normal preoccupation than constantly posting email? I am not trying to upset anyone by posting here - I felt that this would be a great place to receive a wealth of information. My husband may not post here, but he reads everything. What my husband is going through is very real.

[Guest guest]

, you seem to be a devoted wife and

concerned human being. I applaud and commend you and the parents of children who have this disease. To you Non-Sufferers I say again: WELCOME

TO THE GROUP.

To the one who sent the email to , I ask: WILL ONLY THE SUFFERERS FIND THE CURE? Isn't it the dedicated and concerned that work hard

to find the answers? The cure? The relief?

I thank God that there are men and women in the

medical field that research, discuss with others, and

busy themselves in finding relief for those that suffer

a disease that they themselves are not afflicted with.

Our message board offers help and understanding.

Let's leave hurtful comments out of the equation.

in Oregon

[Guest guest]

I have a question for the group. I am the one who has relief with carabonated beverages. I mentioned in a prior e-mail that my doctor says I have the most advanced case of A he has ever seen. (27 years) It has progressed up my E to the point that over one half of it is closed. I no longer have the regurgitation, pain,only occasionally the foam etc. I have never had the surgery, primarily because it was not diagnosed until four years ago, after which I started the carbonation. Has anyone else out there had the same situation, - where the basic symptoms have stopped, except of course with the inability to swallow without carbonation. It is almost as if I no longer have A except for needing to sip the carbonation before every bite. Am I the only one???? Please respond. Marilyn in L.A. n P.S. my tests show that the upper part of my E is greatly enlarged!

[Guest guest]

Thank you for the kind words. I am not going to let this

letter stop me from staying with this group. I was brought here for

a reason, and I do believe that together as a group we can support

and work together to find relief and maybe someday a cure - but if

not a cure a better way of coping with this disease.

> , you seem to be a devoted wife and

> concerned human being. I applaud and commend

> you and the parents of children who have this

> disease. To you Non-Sufferers I say again: WELCOME

> TO THE GROUP.

>

> To the one who sent the email to , I ask:

> WILL ONLY THE SUFFERERS FIND THE CURE?

> Isn't it the dedicated and concerned that work hard

> to find the answers? The cure? The relief?

>

> I thank God that there are men and women in the

> medical field that research, discuss with others, and

> busy themselves in finding relief for those that suffer

> a disease that they themselves are not afflicted with.

>

> Our message board offers help and understanding.

> Let's leave hurtful comments out of the equation.

>

> in Oregon

[Guest guest]

Thanks for responding. I guess the truth of it, there is NO one solution. Really sad for those of us who really want to help, and those that need help. Thank you again. Marilyn in L.A.

[Guest guest]

, I'm sorry I'm so late on this.... I didn't get a chance for 'puter time this weekend.

I also received a "weird" message a month or so ago in relation to this group. I've had a computer crash and reformat since then, so I don't know what the addy was that it came from, but when I tried to reply, I got a message that the email had bounced, that the address I was sending to wasn't a valid address. How cowardly is that, to send a message from a fake address????

Like everyone else has said before me, this person does NOT speak for the rest of us. You don't seem to me to be a "Munchausen Syndrome by Proxy" type of person, which it almost seems like this person is claiming! You obviously would much prefer to be playing with your kids rather than butting heads with ignorant doctors and insurance companies while trying to help your husband do something as simple as eat! To make that claim is just preposterous, and goes to show that the person who sent the message has mental problems of their own that need to be addressed. (I liked the suggestion that the message writer was "jealous" b/c they didn't have anyone in their life that cared enough about them and this disease to go to the trouble that you have done for Chet -- what a sad thought, eh?)

Keep it up, girlfriend! I hope that with the current doctor and surgeon, Chet can get some relief PDQ!Debbi in Michigan

Attached E-mail that I received

Hi All! I am not sure if I have made someone from this board mad, but I received the following e-mail this morning - I pasted it here -there were no names, but I think that I may be upsetting someone here:Are you the person who is supposedly fit and well who wants to mix with those who aren't. A person who has a family and whose relative who is sick never says a word about their condition or tries to discuss it with others. If a person hasn't got a diagnosis why do their relatives need to research a condition they haven't got?Don't most other people find something else to do like playing with their children or a new hobby? Surely this is seen as more of a normal preoccupation than constantly posting email? I am not trying to upset anyone by posting here - I felt that this would be a great place to receive a wealth of information. My husband may not post here, but he reads everything. What my husband is going through is very real.