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Posted on: Tue, 05/14/2002 - 12:05am
smack's picture
Joined: 11/14/2001 - 09:00

Just having my morning coffee and KNEW there would be more to read after I signed off last night.
I just can relate to those here that post that have a more relaxed attitude on living with PA and want to help de-stress those that are on the edge.
That's what it's all about.
I don't roll my eyes reading when someone vents and sounds like they are on the edge, I just like to hear people reply to those posts in ways that can bring that person back to a happy, confident place so they can deal with all of this in a better more positive way.
no wonder I'm non-denominational [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Posted on: Tue, 05/14/2002 - 12:09am
anonymous's picture
Joined: 05/28/2009 - 16:42

Hey, I love a debate, and I'm the first to say that just because someone has an opinion, doesn't automatically mean it's the [i]right[/i] opinion. I get the feeling that a crucial point is being missed here - river, I hope you're still reading this thread!
I'm not asking anyone to feel the way I do - I strive to be inclusive and tolerant in real life and on the internet. There is enough hate in this world - I won't contribute to it. What I am trying to say is this (not specifically to river - just to make a point):
Just because you have a lower comfort zone threshold does NOT mean I'm a bad parent because my comfort zone is different. The accusation has come through loud and clear - from various posters - that some of us are not being "careful" enough. Define careful. Obviously, everyone has a different definition. As Sue says, can't we just get along?
Take what you need from the mainstream PA community, and somehow compartmentalize it into your life - don't [i]make[/i] it your life. I grew up with a PA/TNA friend, so maybe her attitude rubbed off on me - she doesn't define her life by her allergy, she just takes the necessary precautions and gets on with her day. She educates people when she can, but she not strident about it. She knows that if someone doesn't "get it" today, she can simply try again tomorrow and meanwhile navigate the nut land mines successfully because she's GOOD at it. She learned to keep herself safe, not because her parents wished her to, but because she hates the "hit by a Mack Truck" feeling of anaphylaxis. She's not apologetic, just matter-of-fact about food she cannot eat. And YES she knows she can die, nevertheless, that's a pretty heavy trip to dwell on 24/7.

Posted on: Tue, 05/14/2002 - 12:16am
KATHYANN's picture
Joined: 09/29/2001 - 09:00

My son has has this allergy for 8 months now, and to keep something in perspective to me would be easier if every allergist said the same thing, or your in-laws didn't feel it was that big a deal, or your 'friends' didn't call your son bubble boy. Sometimes the anxiety doesn't come from the allergy itself but the surrounding influences. I become anxious usually when someone on this board brings up something I missed. then i can get alittle nervous wondering if IM missing other things.. I have for awhile now thought about dropping this board because to tell you the truth , I dont like to have an anxiety about posting. is my posting etiquett correct.? Does this sound ok? Too much thinking , I consider my husband and I intelligent, thoughtful people and I think I will call the companies I need to call , and the rest Ill do my own legwork, I appreciate all the support Ive gotton but I dont like being told how to post or that Im not doing it right and that has happened alot lately. Kathy Ann

Posted on: Tue, 05/14/2002 - 12:35am
B G L's picture
Joined: 06/03/2001 - 09:00

River I'm with you. We need to support each other here.
Our family has been living with this pa allergy for 14 years. I know all about trying to live a so called "normal" life with a DEADLY allergy! Yes, I'm probably one of those parents that doesn't have the same level of perspective that some of you do. At least not on all days.
What I have seen here in these posts is exactly what I've wanted for 14 years. A normal life without this constant worry over my head. I'm sorry you guys but, It's a fantasy. The only normal that I've found is knowing the safe places to go, the safe people to be with, asking the questions that need to be asked, and planning ahead of time.
My husband and I sometime start planning a vacation. But, part way through the fantasy we realize. Oh, we have to fly, or what will we do about the food on board the ship, where will we eat, can we get a room with a kitchen, is Disney Land safe enough, are we close enough to a hospital if he has a reaction? ( David is ingestion, inhaled and touch reactive.)We have gone on vacations but, planning and changing plans right in the middle of a vacation are the norm. Many times vacations are just more hassle than they are worth. Right now we are working on a "Safe" HS football camp for David that will be at a 4 year college 300 miles away! So yes, my anxiety level is up. But, for your comfort, I'll keep it in perspective!
Let's remember what this website is intended for, to help each other cope with an allergy that changes the norm for all of us!

Posted on: Tue, 05/14/2002 - 1:13am
n5vox's picture
Joined: 04/17/2001 - 09:00

Kathy Ann,
I am sorry to hear that you are thinking of leaving the board. [img]http://uumor.pair.com/nutalle2/peanutallergy/frown.gif[/img] You recently posted a topic "cabin fever" I think and several people gave you some ideas. Don't let anyone make you feel that you are not "doing it" right! If someone doesn't like the way you "do it" - then they dont have to answer your post! I have learned a lot here and think that you would be missing out if you go. Type what you want and don't let others bother you. You deserve support and thoughts and answers just like everyone else does. Hoping to see you out here in the future. Amy

Posted on: Tue, 05/14/2002 - 4:29am
anonymous's picture
Joined: 05/28/2009 - 16:42

Kathy Ann
You are no doubt referring to my request about netiquette from several weeks ago. Every discussion board and forum group on the internet has posting guidelines, and posting members are expected to follow them.
Most folks "lurk" for a while on a new site, so they can get the hang of the other members' "styles". PeanutAllergy.Com is in fact one of the [i]least[/i] concerned about netiquette sites on the net, due to the fact that it's more important to get PA information out there than it is to worry about proper netiquette.
But some breaches of etiquette, like writing a post all in caps, must be addressed. When we communicate in the written word, inflection is everything. Capitals emphasize what we're saying and makes it "sound" like yelling. It has also been proven to be harder to read, and it takes longer for people to read. I weighed the option of not saying anything and risking you not getting your posts read - and saying something in the nicest possible way in the hope that you wouldn't take offense.
Well, I guess I now know my concern was unwarranted and unwelcome, too. So, post however you want. But know that while *this* site is very netiquette-lax, the vast majority of others are extremely uptight about it, and you'll find Forum Administrators jumping on your every post if you're not "doing it right". If you're going to jump into the Internet Ocean, you hafta learn how to swim. Just so you don't think I'm some sort of Thread Nazi. I'll refrain from posting altruistic netiquette guidelines in the future.

Posted on: Tue, 05/14/2002 - 6:08am
san103's picture
Joined: 03/27/2000 - 09:00

This is not my first round of being told not to say certain things on this board. The only hope I have is that those who participate on the boards respect others -- even if you don't agree. Please don't let others who attack frighten you away...there is too much to gain for us participating together...even when we disagree.
I have days when the peanut and other allergies is more than overwhelming. When I first discovered my son's allergies I acted like I was in mourning. I was mourning the carefree lifestyle that many enjoy without even thinking about it. Now, down the road, and with reactions a few years in my past, I feel in a better place, but pa is always with us.
Take care. Continue to be honest. Respect others.
[This message has been edited by san103 (edited May 14, 2002).]

Posted on: Tue, 05/14/2002 - 7:12am
Going Nuts's picture
Joined: 10/04/2001 - 09:00

Wow, stay off the board for a few hours, and look what I've missed.
I'm apologizing up front for two things. Number one - being long winded. I just want to be sure that I am not misunderstood, as that is common when relying upon the written word. Number two - offending anyone, as that is not my intention.
Here goes. When I come on this site, I am not seeking to validate my own point of view. I like to gather information from all sources, then pick and choose what is useful and applicable to me. I don't think that people have to have one perspective, and I think it is interesting and informative to get all sides of an issue.
In addition, let it be known (by those who don't know me yet!) that few people in the world can worry like I do. My family will attest to the fact that I'm a world-class worrier. Example - I'm the first to admit that I didn't sleep for a week before a family wedding last fall, worrying about food, the nearest hospital, etc.
My son is both touch and airborne sensitive, and this is a constant concern. With few exceptions, we do not limit his activities. And if something comes up that simply can't be worked out, so be it. We don't agonize over it.
For those of us who are new to the world of PA, this is a life-altering experience. The anxiety is very overwhelming. This doesn't necessarily go away totally, but with time I think it waxes and wanes. It increases when we approach new situations, and decreases when we feel more in control. We've been dealing with this for seven years, and it really does get better.
Those things having been said, I think it behooves those of us who have been dealing with this for awhile to be aware of the effect our posts have on others. I'm not saying we shouldn't vent or seek out information (if we can't do it here, where can we do it?), just that we should be mindful of how fearful newcomers are. Even when my worrying is at its most out-of-control, I know when it has gone over the top and is not really rational. This is when I try to pull back and not post every thought that comes into my head, totally uncensored.
I can't remember which poster said it, but one of us said that PA is not the worst thing that could happen to us or our children. That is so true. It may feel like it at times, but it isn't. It's bad enough that we make ourselves crazy, we musn't make our children crazy too.
I hope I haven't added to the contentiousness of this thread. I hate to see "threads go bad" and for people to walk away feeling attacked. I'm not seeking to attack anyone here, just to give my $.02.

Posted on: Tue, 05/14/2002 - 7:13am
river's picture
Joined: 07/15/1999 - 09:00

I think that this is a great discussion---Kathy Ann, don't leave. It sounds like you've been through a lot lately and when you're feeling hurt and vulnerable, small things can seem much bigger.
Anyway, back to the topic at hand, I've been a victim of PA politics and the types of things it can create. I happen to be 'for' keeping peanuts and nuts out of schools, (surprise!), but the one other PA parent at the school happens to be against, (very much goes by the FAAN handbook, brought to you by the National Peanut Board---have I already said that?) So very well, I can work with that. My son is in a "peanut-safe" school but guess what---the school council sells products with nuts and peanuts, has bake sales that bring nuts and peanuts into the school and also bring 'may contain' products into the peanut free classrooms. Doesn't make sense to me, so I speak up. Nicely, politely and diplomatically. Other PA Mom, (deeply in with the clique....oops I mean Parent Council), says I'm outrageous, a radical fit to be hanged. I find myself the victim of nasty gossip and ugly PTA politics. The Chair of the School Council says, (out of the blue), "people are praying their children are not in your son's class next year." He happens to be one of the nicest, kindest kids you could ever meet. And I was put in the position of worrying about his safety in the shadow of this cruelty.
I learned first hand how destructive some of the current ideas around peanut allergy can be. If not for this other parent and her personal hostility toward my philosophies, there would not have been this bizarre and nasty situation. Compromises could have been made.
Anyway, that's why I feel uncomfortable when PA parents accuse each other of bad parenting. It's always destructive and most destructive to the most vulnerable---the children.

Posted on: Tue, 05/14/2002 - 7:22am
BENSMOM's picture
Joined: 05/20/2000 - 09:00

I wanted to make another point with regard to perspective, and I've never seen anyone talk about this, so what I'm saying may be heresy. I think it's ok to take "reasonable risks" with regard to this allergy. The definition of "reasonable" will vary with each person depending on the age of the child and the reaction history. A lot of people have talked about dangers in the grocery store. If your child has reacted to an open bin of peanuts, then it is not really a reasonable risk to go down that aisle. But if your child has never reacted to smell, it is certainly a reasonable risk to go to the grocery store. It's a reasonable risk to leave your child alone on a playdate if you've provided food and epi training and you feel the parent is responsible. For me it was a reasonable risk to allow my son to attend a birthday party (my husband and I were there too, as this was a family friend's daughter) where there was cake with peanutbutter frosting and pb ice cream.
Now, if you take reasonable risks, your child might have a reaction. I think it's really important not to see minor reactions as a failure on our part to protect our children. Instead, they are learning experiences for us and our kids. We may need to tighten up in some area, or it could just have been an unforeseeable situation that is unlikely to happen again. But a minor reaction is not a disaster. Any reaction *could* be life-threatening, but most reactions won't be. There are no studies that I'm aware of that indicate this allergy gets more severe with age and exposure. It probably does for some people but everyone is different. I'm not suggesting you put your child in a blatantly risky situation just to see what happens. I'm suggesting that it's ok to leave the bubble and live your life in a way that reasonable accomodates the allergy, and if an occasional minor reaction happens along the way, you learn from it.


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