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Posted on: Wed, 01/14/2004 - 1:09pm
dmbb's picture
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Joined: 10/12/2002 - 09:00

You sound very depressed. I know it must be very frustrating to have multiple food allergies, and to have them increasing. You almost have to grieve for the loss of your good health. Food isn't everything. You can still have a very full life. Even with a bland diet. There is a lot of hope for treatments in the next few years.

Posted on: Wed, 01/14/2004 - 1:51pm
erik's picture
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Joined: 05/15/2001 - 09:00

Quote:Originally posted by sillyfeline:
[b]THERE ARENT ANY ALLERGISTS HERE WHO I DIDNT TRY. You know what? I have tried everything and this place just makes me more upset. So they blame; it must be my doc or something i didn't try, when the truth is it's all been done and there just is nothing. And now I just feel less understood and more isolated than ever. Reaching out is wrong. I need to learn to stop this.[/b]
You didn't try everything. Some people suggested you should try Dr Sampson (one even mentioned an adult friend of theirs went to him) but you said "why bother".
You said all allergists are quacks. Many of us have had very positive experiences with our allergists and we are just trying to encourage you. I don't think it will accomplish anything being hostile and blaming us and saying we don't understand you. We are all trying to help each other here.
Quote:Originally posted by sillyfeline:
[b]You know what? I have tried everything and this place just makes me more upset. Everyone needs to believe that there is hope for everyone or they might see this as what could happen to them. So they blame.[/b]
We are not blamong you for anything. We are just trying to help the best we can, yet you seem to blame us for trying. People here are trying their best to help and your comments will just duscourage others from posting in this thread. We are trying to help and I don't understand why you are upset with us. A positive attitude goes a long way to helping cope with life. Whne handed lemons, make lemonade.
[This message has been edited by erik (edited January 15, 2004).]

Posted on: Thu, 01/15/2004 - 5:06am
Jana R's picture
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Joined: 02/09/1999 - 09:00

You're in a really rough patch right now. It's so bad you can't even recognize that that are more than a dozen people who tried to think of something they could say to try to ease your desperation. I recall a few months ago that you felt the same way - that none of us had anything of merit to say in your particular situation. I think I understand now that you just need a place to vent and be heard - I will offer my support to you but I get it now that you don't desire any suggestions I can offer. It's been the experience of this bulletin board when someone posts, they are looking for ideas from others who have "been there". When someone says they "can't take it anymore" it is a natural response by others to offer ideas - so please try to understand where we are coming from and as we get to know you better, we will understand what you want us to say to you.
------------------
Jana
[url="http://www.seattlefoodallergy.org"]www.seattlefoodallergy.org[/url]

Posted on: Sun, 01/18/2004 - 10:54am
sillyfeline's picture
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Joined: 03/28/2001 - 09:00

i wish there were suggestions, but most, like erik just keep repeating how i should insist on seeing a pediatric specialist who wouldnt see me. sigh. people are so insensitive and dense sometimes. they refuse to even listen. this is helpful how?

Posted on: Sun, 01/18/2004 - 10:58am
anonymous's picture
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Joined: 05/28/2009 - 16:42

Have you tried looking outside on NYC? Maybe the enviroment you live in is contributing to these allergies. NYC has some strange things. I use to live there.

Posted on: Sun, 01/18/2004 - 1:23pm
erik's picture
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Joined: 05/15/2001 - 09:00

Quote:Originally posted by dmbb:
[b]Could you get to Mount Sinai School of Medicine to see Dr. Sampson or Dr. Sicherer?[/b]
Quote:Originally posted by sillyfeline:
[b]Why bother?[/b]
Quote:Originally posted by AnnaMarie:
[b]I can't remember who, but there is at least one adult on this forum that sees Dr. Sampson. He may have children as the largest part of his practice, but, it isn't all of it.[/b]
Quote:Originally posted by sillyfeline:
[b]i wish there were suggestions, but most, like erik just keep repeating how i should insist on seeing a pediatric specialist who wouldnt see me. sigh. people are so insensitive and dense sometimes[/b]
I see. So we are all spending our valuable time trying to help you and all you can do is say that we are [b]so insensitive and dense[/b]. Would you have preferred that we had all ignored you and you had zero replies in this thread??? How do you think name calling will help you in your situation? I don't see how. All it will do is prevent anyone else from wanting to post suggestions to you as they will anticipate the possibility of a hostile response.
We really are trying to help you here, but I will refrain from posting further in this thread as my suggestions seem not to have helped. I hope others will be able to assist you in a better fashion and best wishes.
[This message has been edited by erik (edited January 18, 2004).]

Posted on: Sun, 01/18/2004 - 2:23pm
Anonymous's picture
Anonymous (not verified)

Okay, I just have to look at the list of allergens, just to figure it out inside my head and I'm doing it in the thread:-
egg, wheat,
cheese, tomato, apple, orange, coconut, and sweet potato. (peanut, nuts, soybean, peas, carrots, etc).
What is the etc.?
If cheese, does that mean cheese only or milk really?
So most or all of the eight major allergens and although I don't know the cross-reactives very well, probably the others are cross-reactives.
Under Living with PA, I raised a question about the whole list of allergies people were dealing with. There has been a LOT of response in that thread (heck, sillyfeline, you may have even responded in it), and there are people dealing with a LOT of food allergies, not solely PA or PA/TNA here.
Stupid question again - when was the last time you had allergy testing done? I don't even know if you can test for every food on the planet or not or what groups of foods one tests for, my PA son has never "officially" been tested for PA.
sillyfeline, I honestly think that you received wonderful response in this thread. I also think that you kinda went SNAP in the thread somewhere. I only know because I've done the same thing in other threads. I was feeling whatever I was feeling - angry, vulnerable, depressed, upset and someone very kindly posted something but ONE word just set me off and I went SNAP and that was the end of it. And he**, it's not even me with the PA, it's my son. But SNAP and I'm outta here.
But what I have learned, and I did say this in your other thread, is that this is the ONLY place where I have found compassion, caring, encouragement, understanding and information. The ONLY place. Not in my *real* life. Chrikey, even in Off Topic, people show more concern (and all of the other qualities I mentioned) about whatever I post than I get from people in *real* life, even those who would/could/should be concerned (and all of the other qualities I mentioned).
This is a wonderful group of people and having just been through two months of personal he**, do you know where I came to find solace? PA.com. I know. I'm quite strange. I find comfort in coming here, either asking a question, helping someone out hopefully, or just entering a discussion.
Step back and take some time if you need it, certainly, or do leave PA.com forever, but please know that everyone here does care and we're all just trying our best to help one another out.
Personally, I suggest you move to Canada, socialized medicine and all where you can get treatment by top allergists here as well and not be out of pocket. [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
------------------

Posted on: Sun, 01/18/2004 - 11:44pm
williamsmummy's picture
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Joined: 03/26/2002 - 09:00

Hello sillyfeline,
I have just sat down and listed all the foods my son is allergic to, and it came to the total of 15.
Which is rather a lot IMO.
Shall I tell him now that its not worth living with? , That the doctors cant help him?
Tell him that its not worth bothering to find any good advice or support, because he is not going to grow out of most of his allergies, so its not worth the bother?
So, my child has my support, which you as an adult do not get, but..........
you DID get some advice and support, and even if it was not helpful IYO , it did show that others are thinking of you.
There is still a lot of problems for those with severe food intolerances , and there is a growing number of those with both types of food allergies.
I do not have much experience with intolerance allergies, but one mistake with a food that you are intolerant too can take a long time to clear up any symptoms.
I met an adult with many more IGE allergies than you, a young woman who grew up to develop allergies the year she started uni, a whole childhood without any allergies , and boom! anaphylactic to many ordinary foods. But there she was in the houses of parliment lobbying MPs, which I may add was full of foods at the buffet that all had the potential to kill her.
I hoped that day , that my son would grow up to be like this girl.
A true fighter, someone who would grasp life and get the most he could out of it.
I wish you luck sweetie , I really do, but sometimes you just have to help yourself.
sarah

Posted on: Mon, 01/19/2004 - 12:48am
Nick's picture
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Joined: 11/01/2000 - 09:00

Brilliant post, Sarah, just brilliant!!

Posted on: Mon, 01/19/2004 - 1:46am
SF's picture
SF
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Joined: 06/06/2002 - 09:00

It is sad when someone feels helpless and sounds depressed and ready to give up.
Sillyfeline, check out [url="http://www.yeastconnection.com"]www.yeastconnection.com[/url] I posted about this under "Books"
Maybe this therepy will help you with your food sensitivities...just a thought

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