How Did You Arrive at Your Current Comfort Zone?

I have just decided to accept my food allergies and the limitations it places on my diet.

I still can make most of the foods I enjoy so I happily eat at home.

I don't eat out which relieves a lot of stress.

Since, I eliminated the restaurant food and all the candies, brownies, ice cream, pop, etc...I also have lost 100#. So, I feel a lot better now plus my blood sugar is normal now, too. I also have not had a respiratory infection since I eliminated refined sugar from my diet...that's for three years. Before, I was having 2-3 per year. I also have been able to eliminate one of blood pressure pills with the weight loss.

So, most of the time I consider the peanut allergy a blessing in disguise because my health is so much better overall.

Hi, my middle child is pa and 10 years old. When he was first diagnosed we thought only he couldn't eat peanuts and all tree nuts. We still did at work not realizing we could bring residue home with us. The more information we got we realized we were not comfortable doing this anymore. He is highly allergic to touch,taste and smell. Boy, were we lucky he didn't have a reaction in those first months. Now, nobody eats any pb products in or outside the home. This way our home is a little more stress-free.When he was first diagnosed it was awful to try to get any information even from doctors. They acted as if they didn't know much about it. I guess our comfort level is we all as a family act as if we have pa. rj

[This message has been edited by rj (edited January 20, 2003).]

I will post my answer in the next few days, as I really have no time at the moment.

I am sure it will be surprising what I write as times were different when I was growing up. Peanuts were in my environment quite often when I was young in the 1970s and 1980s... (and back then , I don't think there even was such a thing as an epi-pen!).

As Arnold would say...

"I'll be back..."

We arrived at our current comfort zone through experience and education. When Kevin was a baby (before we knew he was allergic to peanuts) he always sat next to his big brother while BB was eating PB&J - no problem. For quite awhile, even after we knew he was PA we didn't change anything; there didn't seem to be any reason to. After he started having airborne reactions, we tightened up on that front.

I never let him have "may contains" that I knew about, but didn't realize that this labelling was optional (and going back a few years far fewer companies labelled). He had several "mystery" reactions, none of them serious. We just chalked it up to his being so allergic in general. Once I found out about the current labelling status, I tightened up considerably. That's where we stand now.

Once again, good question!

Amy

Simply re-raising. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Quote:Originally posted by Cindy Spowart Cook:
[b]How did each of us arrive at our current comfort zones, whatever they may be?
[/b]

I took the bus, personally.

Jason

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[b]* Obsessed * [/b]

Jason, ROFL. You're hilarious! I took the streetcar actually. Not like a San Francisco streetcar though.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

My comfort zone has slowly evolved, and continues to evolve. When he was first diagnosed, I was very ignorant about allergies. I didn't give him any peanut products, but didn't even know to look for "may contains" at first. Then I started looking for "may contains" but didn't go any further. I used to let him have baked goods as long as it didn't obviously contain peanuts, until I found out how common cross contamination is. I didn't use to ask about peanuts at restaurants. THat is still something I find hard to do, and usually don't ask too much at places we have eaten at in the past. I have changed many things as I have learned more. I continue to learn, and my comfort zone adjusts as I do. I do consider us very lucky that Jimmy hasn't had another known reaction since he was diagnosed over 5 years ago (there is a question of a possible mild reaction a couple of years ago).

My daughter was almost 12 months old when she was diagnosed (a year ago). As soon as I could stop sobbing uncontrollably, I went into major research mode. I read everything I could find, especially on this forum. My father is anaphalactic to tree nuts and almost died when he was in his forties from a few bites of a donut. So, I knew how serious this allergy was.

I was overly cautious for the first few months until I could get a grip on which manufacturers labeled responsibly. Over the last year, I've added so much to her diet. I still won't feed her restaurant food or most fast food (she is egg allergic too). If she outgrows her egg allergy, I feel I will let up more on the fast food.

I feel she has a better chance of outgrowing these allergies if she stays clear of them and I feel like I have to do this for her.

It took us a couple of years to figure out DD was PA. After she chewed on and spit out a peanut M&M and had terrible mouth and throat pain, we figured it out. But we got no helpful advice from family practice doctors, so we just avoided peanuts and peanut butter, and we started to notice peanut flour in some things and avoided that, too. When we discovered that she got hives from peanut butter touching her face, we all started washing our hands after touching peanut butter. When she got hives from eating jelly, we figured out that we couldn't put a knife with peanut butter on in into the jelly jar. At first we switched to the squeeze bottle of jelly so we wouldn't forget. DD would know it if she smelled or tasted obvious peanut in something, so we told her to ask her Sunday School teachers if there was peanut butter in food they gave her, but then to smell it herself first and then take a tiny taste. We were so clueless! Like I said, the doctors just said don't feed her peanuts, I'd never researched this (amazing if you know me and my librarian past), and she just would get hives and mouth pain, which we'd fix with Benadryl. So when there was a bag of individually wrapped and labelled candies at my parents' house this last Easter, and some had peanut butter filling, well, we watched out to make sure she didn't pick a peanut butter one. And it tasted fine to her. So it took a slowly-progessing anaphylactic reaction that led to an E.R. visit with PA-educated nurses and doctor to make me realize we were dealing with something dangerous. So after reading "The Parents' Guide to Food Allergies", going to an allergist, and researching on-line, we've arrived at no "may contains", no "processed on" or "processed in" labels, no bakery products, no ice cream parlors, read every label, research restaurants and go out to them as seldom as possible. And carry the Epi-Pen everywhere (I've carried Benadryl for 2 years). And I've stopped baking peanut butter cookies and started making sunflower seed butter cookes for DH (DD doesn't touch them). We still let DS eat peanut butter sandwiches once a week. He knows he has to be careful with his hands and dishes, and I've started using only paper plates for that. I need to get a package of plastic knives. So we've recently adjusted our comfort level and we're still figuring out the details. It took a bad reaction and some good information for me to really restrict my comfort zone.

I haven't arrived yet....I'm still on the bus.

Simply re-raising to compliment another thread. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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There but for the Grace of God, go I.

We no longer buy any bakery items, or store bought ice cream (only from a local dairy that after hearing their practices I feel is safe). We are eating out less. When we do eat out it's only at restaurants determined to be safe after online research and 2 calls on separate occasions to the restaurant.

We don't buy "may contains" or anything that uses shared lines. The only pn product in my house is pb, used rarely and under strict rules (already been ripped for this on another thread, so don't bother)LOL

I have contacted the manufacturers of the brands that we use and have put a couple on my "do not trust" list and yes there is literally a list.

DH and I hit the ground running on this as soon as ds was diagnosed.

Anyone that ds is left with is given a thorough set of lists of cleaning guidelines, how to read labels, etc, we also discuss with them at least a couple days before he is left. We also bring snacks so we know there is something safe for him to eat.

If it's in our home we hide the peanut butter and know everything else available is safe.

Everyone we know has been educated on how to use the epi pen and how to spot a reaction.

Since ds RAST was low and he is only 2 we were told he is in the group that has potential to outgrow. We feel we are doing what needs to be done to ensure that if it can happen for him it will. Again, don't even mention the jar of PB. LOL

I thought I arrived at my comfort zone until DD was retested and her caprast went up, I didn't expect it to go down but at least remain the same. Now my house is peanut-free, I was always a label reader but as DD gets older and more aware I have this desire to educate everyone all over again. I'm not sure if a PA ever reaches a comfort zone. I think until DD is old enough to read the word "peanut" there will never be a comfort zone for me. I read to her, show her what's not safe and what is, what may contain peanuts and what doesn't, again. I feel my comfort zone changes daily with DD. I do know this, this will always be a peanut-free house, but I think in some ways I have it easy, first DD diagnosed with PA, second DD will never know the difference. I'm not sure where my comfort zone would be if it was reversed.

Quote:[b]
.... Arrive at ....

[/b]

Hmmmm. Don't think I have. "Arrived," that is.

Mark us [i][b] "In transit."[/i][/b] [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Ours is 'informed' by two near-fatal and astonishingly rapid anaphylaxis episodes with cardiac involvement, the subsequent development of contact and aerosol sensitivity that even her allergist (initially skeptical) now believes in, and an egg allergy that is as severe as most PAs. Oh-- and a whole host of more irritating than dangerous symptoms of atopy.

We've made our share of mistakes over the years-- but the ones we regret the most all seem to have one thing in common. [i]Not trusting our INSTINCTS.[/i] Rationalizations can talk me out of a lot-- and sometimes my emotional brain is just plain smarter about seeing and properly evaluating the 'big picture' It is composed of all those little details that don't seem too alarming by themselves-- at least not to my rational brain. Mommy brain knows, though. She's a smart lady. I should listen more often. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

I'm only truly comfortable with my PA child, now 8, [i]in[/i] my own house. Even there, I am never really not vigilant unless my DH is 'on the clock.' KWIM?

For the first few months after onset, I had no comfort zone whatsover, was overwhelmed and panicked 24/7 except when my mind absolutely had to be focused on something else, didn't go anywhere but to work and immediately back home, didn't feel safe even in my own home. This was despite many reassurances from doctors and many more experienced adults with FA, and was not helped by the fact that my TN reaction set off other physical issues that took a while to go away. When they did, I realized that I'm not allergic to several things in addition to TN/possibly PN that I thought I was, and I started to calm down.

My comfort zone was mostly influenced by the advice and experiences of 2 doctors and many adults with FA in my life including one who has lived a very full life with PA/TNA for more than 60 years. I also read a lot from various sources including this board, and it can be helpful, but takes a lot of sifting and processing conflicting information and putting it in the appropriate context for my own situation. I feel very fortunate that I do have supportive adult friends and coworkers with FA experience, because the vast majority of resources out there are for parents and children, not adults, especially adult-onset ones like me. Almost a year out, I think I've reached a reasonable emotional space for myself. Some days are better than others, and I still don't like being FA, but I cope, and it's day by day, week by week now instead of minute by minute, hour by hour.

My comfort zone is tighter than my doctors advice, similar to most of the adults with FA whose allergies and reactions are closest to mine, looser than most of the people on this board. Because I am an adult, my reactions are not ANA or considered by my doctors to be high risk of becoming so, I'm not contact or airborne sensitive, I'm able to be and am careful, but not endlessly vigilant about every small detail. So far it works for me, as well as it has for the other FA adults in my life. If the allergy were more severe, or if I were responsible for a child with FA instead of myself, I might make different choices.

If my own allergy changes, I'll cross that bridge when I come to it, but I've made a conscious decision to try not to dwell on every possible risk and horror story because for me, it's overload and makes it difficult for me to adjust and cope. People on this board and elsewhere in the FA community sometimes have strong opinions born out of the emotion of their/their child's or other loved ones' experiences, and I respect that. Sometimes that strong emotion makes it easy to slip into the idea that the way we individually choose to do things is the only right way, that any situation that doesn't fit our own comfort zones is wrong or ignorant or is not a real allergy, etc. But every allergy is different. Every family situation and lifestyle is different. Even doctors have different approaches. All of those should be heard, but sometimes I find it necessary to step back from all the "noise" from various sources so that I can make a clear-headed decision that works for me. As somebody else posted, a lot of it is instinct. And though I'm not that far in this FA journey myself, I would say to newer people basically what I was told by my more experienced friends with FA-- that education and information is a good thing, but ultimately, each of us just has to live it, learn and adjust as we go along, even if it is a long process, that there are choices, that we each need to feel right with them even if they aren't the same as other's choices, and if something is upsetting or unhelpful for your needs at any particular time, it's ok to go away and find people and things that are more helpful. I try to remember that myself.

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(relatively recent adult onset non-ANA TNA/inconclusive PA)

[This message has been edited by journstep (edited August 15, 2007).]

I have been only alittle over a year now with allergies. (Now 41 yrs old). I made the decision no to eat out anymore. I tried for a year to order and talk to the waiters and the chefs. Kept getting reactions. I would feel like crying and I got depressed. Now I buy and cook and bake all my own food from scratch as much as possible. I cook really good meals at home. Better than restaurants food. I feel so much happier. Fairs, potlucks, cookouts and bake sales and still hard. Those were my favorite. I just eat before I go or bring all my own food.

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Allergic to all soy, all nuts, peas, beans, sunflower. Started at age 40.

I didn't used to take almost any precautions beyond simple label reading and DS kept having reactions so I got more and more careful until the reactionos stopped. After we went to a party and D played with other children who had frosting on their hands and then he reacted we started asking that others wash/wipe after eating or didn't go. After DS's eyes swelled nearly shut and his lips got big and he got hives and wouldn't respond at all to me for several minutes when I had him in a shopping cart I had not wiped I started carrying wipes everywhere and using them on all shopping carts and being strict about handwashing or wiping.

I think I'm in the losening up zones swing just a bit now.

I think my choices make sense given the reactions DS had before I started taking those precautions but there are some things I see (lack of reactions when playing in public) that have me wondering how safe is too safe or safe enough. I will probably go back and forth on some things.

We, uh, took the "A" train (as in "Allergic March").

Not content to let Jason and CM get all the humor points around here....

[This message has been edited by Nutternomore (edited August 21, 2007).]

It's been a long walk with this elephant on my back. Can I stop and rest for a while now?

edited to add- experience has been the best teacher for us.

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Cheryl, mom to Jason (9 MFA including peanuts, tree nuts, shellfish, coconut, sesame, squid)
Joey (8 NKA)
Allison (4 milk allergic, suspect shellfish, avoiding PN/TN for now)
Ryan (1) nka *knock on wood*

[This message has been edited by solarflare (edited August 21, 2007).]

Comfort Zone??? Is that something with definate boundaries?

So far, every time I think I have found one, my allergies seem to find out....

Quote:Originally posted by Adele:
[b]I haven't arrived yet....I'm still on the bus.[/b]

I posted this in 2005, about five months after being told I had PA.

Now - two years later, I have a comfort zone.
How did I arrive? Very carefully.

At first I was paranoid about eating anything....mainly because the ana reaction that prompted me to go to an allergist (where I found out I had PA) was pretty fresh in my memory.

It has been trial and error. I'm much more careful in restaurants because of three reactions from restaurant food.

I'm a little more lenient with food that I prepare myself, because I have had few problems with items that I buy and prepare for myself.

In 2.5 years, I'm used to living with it. It doesn't scare me as much nor do I feel really limited in my diet.

This is probably a stupid question... but is it normal to be on red alert all day every day? We're only 2-3 months into this. I keep losing weight, am afraid to eat, am afraid to feed foods to my son I know are safe because I made them myself - after checking ingredients like 10 times and/or calling. I'm even terrified when I give him something like a banana because the banana skin may have come in contact with something either in the produce aisle or on the conveyor belt in the cashier lane. I've never been had fear I couldn't control before. I'm hoping I get the better of it soon but my husband has commented on my weight loss and that I'm not remotely eating enough.

I know no one can answer for me but if it's part of the process of arriving at a comfort zone it would help me know if I need to do more than just wait it out.

ijkchen

Will your red alert go away?

It's more like you get use to it, to the point that it is not as bothersome anymore.

Quote:Originally posted by ijkchen:
[b]This is probably a stupid question... but is it normal to be on red alert all day every day? We're only 2-3 months into this. I keep losing weight, am afraid to eat, am afraid to feed foods to my son I know are safe because I made them myself - after checking ingredients like 10 times and/or calling. I'm even terrified when I give him something like a banana because the banana skin may have come in contact with something either in the produce aisle or on the conveyor belt in the cashier lane. I've never been had fear I couldn't control before. I'm hoping I get the better of it soon but my husband has commented on my weight loss and that I'm not remotely eating enough.
[/b]

ijkchen, I'm the one with the recent onset allergy, not my child, but in my own experience, for 2-3 months in, it's pretty normal. I think that initial constant red alert stage, for me, stopped somewhere in the 4th month past onset and gradually continued to lessen. Although some days and weeks are better than others, at almost a year past onset, most days, although the allergy is one more annoying complication in an already complicated life that I would rather not deal with, I am mostly not afraid of it anymore, and I recognize that as time goes on, it may not even matter this much to me anymore.

Your timeline and process will be very individual, but in my personal and professional experience with other "acquired" conditions and other losses, it's not uncommon for the initial adjustment to take up to a a year or two.

So largely it is a matter of feeling your way through the chaos for a while and waiting it out. But if your anxiety is affecting your own health to the point that you and your husband are concerned about that also, you might want to consult with your own physician. It will not help your son if you can't function. While posting online to people we don't know here on PA.com can have its place, you may find that networking in person with other FA families in your local area is helpful, maybe more so because you can interact with them and their children in person, see concretely how they cope on a daily basis, get information about local resources, the schools, etc. I realize that at this point, your child is very young, but don't think just in terms of families with toddlers either. Any medical condition or disability is a long term journey, and the perspective of families of older children and adults is invaluable. I know I could have used more of it in the relatively "dark ages" of my own youth (for something other than food allergy) and that's why I have spent much of my adult life mentoring others new to the journey. Unfortunately, as much as many of us want it none of us can predict when or if our/our child's FA will go away. But many people do learn to live with it, and, all in all, have full, satisfying lives. There are adults on this board who have lived with it for decades in the "dark ages" of food allergy awareness. I know many others in my everyday offline life, and have been profoundly grateful to have their guidance, support and example in the past year since my own onset. Try to find people like that near you for yourself and your husband and, in time, for your son, so that he will have peers and older role models for himself. The earlier he has that influence in his life, the better chance he has of knowing how to cope with the challenges that come up and seeing the PA as a "normal" part of him that doesn't have to unduly constrain his activities or his self-image.

I don't know how much this helps you, but I hope it does.

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(relatively recent adult onset non-ANA TNA/inconclusive PA)

I guess the assumption was that I didn't look first for people in my area first before going online. Actually, I'm here because I haven't been able to find anyone after weeks of looking. I probably will be able to get together with Corvallis mom but that is still a couple hours drive for us. Currently, this is the only form of allergy support I have so I must use it. There is no other option right now.

Maybe I should put it this way: I have a doctor's appointment coming up. In reality, there's not much a doctor can do other than tell me to sleep more, eat better, and that I'm stressed and maybe offer to put me on anti-anxiety something or other. I'm not sure I'd be inclined to take a pill.

So I'm trying to feel my way through the early part and evaluate if yes, it's part of the curve.

ijkchen, I didn't assume you have or you haven't looked for local support, and I'm sorry it doesn't seem to be available to you at this time. I was only offering a suggestion if you hadn't, and the same for consulting with your doctor. Anti-anxiety meds are not my thing either, but I didn't necessarily mean that specifically. There may be other suggestions he/she may have that will be a better fit for your needs. If not, maybe my comments will interest someone else here on this board. Like all of us, I'm only sharing my experiences in an effort to be helpful. I wish you and your family well.

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(relatively recent adult onset non-ANA TNA/inconclusive PA)