Living with Food Allergies, 2013 and on

[CMdeux]

Yes, she will, Mary.  You're doing just fine balancing it all.  I'm just sorry that the FA piece is making things so much more stressful than they'd otherwise be. 

[MaryM]

Thanks CM

DD's teacher is allergic to nickel and has a very limited diet.  She talks to her class about it sometimes.  She said she has not seen any of the food anxiety I was telling her about.  We chatted for a bit this morning during picture day.  I told her as much as I could about last night but then started to feel weepy and so I told her I couldn't talk about it anymore.  Made me happy to hear she isn't seeing that at school. 

[spacecanada]

Keep this in mind... you won't always be there to control the food in every situation as your children grow up.  There will ALWAYS be people bringing food in places and social events will almost always involve foods you cannot control.  It's part of our food-centred culture.

Move to a new house: all the neighbours try to invite you over for lunch.  It is uncomfortable because even though to mention allergies and they do their best to accommodate, you still have to bring your own food.  And when you walk into their house and see a toddler and an open jar of peanut butter on the counter (which you then ask to be put away, but you know the toddler is covered in it), you freeze up and don't want to touch anything or even eat what you brought, making the whole scenario even more awkward.

Start a new job or have a business meeting: you're probably going out to lunch with them, and you don't always get advance notice to pick a safe place to go or pack a safe meal to bring.  But to build those relations, you have to go... and possibly not eat anything because you just aren't sure about this new restaurant.  You're lucky if your emergency stashed granola bar is still in your car.

Go over to visit friends: they'll probably have food out.  Granted, friends typically catch on pretty quickly and want to have you over.  But still.  Food.  (We did have one set of friends at our old place that, even without allergies, realized food wasn't necessary long ago.)

Church: every social event has food: pancake breakfasts, potluck lunches, picnics, etc. 

Even at a Girl Guide camp the head leader, after I thought I had a good conversation about why I couldn't attend events where the girls/parents brought in food, added a potluck to the event list and parents still brought in things from the allergen list.  The event 'always had food' and she wasn't willing to change it.  Of course, I chose to be absent, but another leader told me it would have been unsafe for me to be there with nuts and potato crisps (both on the allergen list!).  Same for group camps, when the caterer says they understand allergies and answer your questions correctly but you get there and you find they don't, you're stuck without food for a weekend, or eating plain rice and emergency stashed granola bars and apples for three meals a day -- or you go home.

Navigating these situations with confidence and without fear is HARD.  Anticipating plan B for every food situation is HARD.  I am one who will avoid the situation with food and opt for social isolation as a result.  I have been let down or put in danger too many times.  It's my reality. 

All the parents on this forum are doing such a great job of helping their children navigating this world of food and becoming confident adults with their allergies.  Some level of anxiety is necessary to keep yourself safe, but it's challenging to know where to draw that line.  I hope your children learn to cope with it better than I do.  I must say I am a bit jealous that your kids have so much support.  It's good though.  I LOVE reading stories of how wonderful your kids handle life.  Keep up the awesome parenting!

My mother is one of those 'typical' adults with food allergies who isn't super careful, eats food prepared by others all the time just trusting they did it right, and doesn't always have her EpiPens, though she is getting better with my nagging.  She has allergic reactions all the time and treats them with Benadryl and casual attitude.  My grandparents were the same way and figured allergic reactions were a normal part of life, vs. hypervigilent avoidance.  So the life advice I get isn't always practical: 'tell them what your allergies are and trust that they cooked according to your instructions'  Yeah.... if only it were that simple.  I have a tough enough time with that myself, yet alone someone without allergies.

For instance, I just set myself apart from my new coworkers already... I was hired for a spring break position and the head leader told everyone to go out for supper together and get to know each other better.  I froze up and panicked and went home instead, citing allergies and being uncomfortable and scared about going out to eat in a town I've just moved to, to a restaurant I know nothing about.  (They were mentioning all the places that were unsafe: fish and chips, Chinese, a fancy bakery, etc.) I was very hungry and didn't want to sit and eat nothing.  I didn't have any food stashed in the car.  They all went out anyway, without me.

Sorry, bad allergy day today I guess.  I'm just so fed up with food being everywhere and part of everything.  I know I isolate myself.  My psychologist told me it's necessary in many cases to do so to keep myself safe and he, too, admitted that food is an unnecessary element in many situations.  (Social isolation and avoidance are part of PTSD, and mine has escalated beyond reasonable levels as a result, but it's not something we can safely work towards bringing back to a normal level because of the potential for actual threat to life.  Whereas something like hearing sirens doesn't actually pose a threat to life, it can be desensitized.)  I just wish more people really understood food allergies - and non-first responder or military PTSD too.  And I wish it were easier to get back into social situations after so much hurt.

Not looking for consolation, just needed to vent, I guess.  I'm feeling extra isolated right now because of the move to a new part of the country and having none of my friends here.

[MaryM]

space - you are amazing.  I am sorry you are feeling so isolated now.  Moving is hard...food allergies make it harder.  I remember how isolated I felt when we moved from one town to the next one over.  I have sat at restaurants and not eaten bc I was uncomfortable with how my allergy request was being handled.  It sucks plain and simple.  Actually one of my bridesmaids was pretty passive aggressive and picked a restaurant for my "bachelorette" dinner that I was uncomfortable eating at.  I just remembered that.  Hang in there space.

[CMdeux]

Space, honestly-- I haven't had a great chance to say this to you-- but YOU have been a tremendous inspiration as my DD is dealing with her own PTSD. 

The food allergy bit of it is SO hard-- and finding a therapist that understands how slow your progress is, and how YOUR normal/healthy is never ever going to be the same as what "normative" looks like for most people.... sometimes that seems impossible. 

I admire your strength SO much.    

This-- so much:

Navigating these situations with confidence and without fear is HARD.  Anticipating plan B for every food situation is HARD.  I am one who will avoid the situation with food and opt for social isolation as a result.  I have been let down or put in danger too many times.  It's my reality.

So-- great story, this-- last night I took DD and her boyfriend out for dinner at a local diner which is mostly nut-free, and where DD can eat almost anything on the menu (just not the desserts, which-- yeah, you all get it).  Her meal came with dessert (largely because her favorite waitress was there, and she is more like a big sister than an acquaintance-- she was grilling the new guy).  Naturally, DD couldn't eat it, but she gave it to her BF (who had ordered HIS meal to be "safe" for DD, by omitting eggy condiments)-- chocolate mousse, made on site. 

Her surrogate sister topped it with a HUGE pile of whipped cream straight from the can-- in full view of DD-- which meant that the two of them could discreetly SHARE dessert.  In a restaurant.  DD picked the untouched, pristine whipped cream off the top with her fork, and once she'd done that for a few bites without touching the mousse under it, he ate the rest. 

It was kind of an amazing moment-- and one made possible by people who love and care about her, and are respectful of her need to feel SAFE.    It was the exact opposite of the passive aggressive moves that some people have laid on her (Mary, that is just AWFUL, honestly). 

[MaryM]

CM, last nights sounds wonderful!  Those are the people who make this road easier   So happy for your DD and her BF.
Side note, I am no longer friends with that Bridesmaid - did not really put it all together until well after the wedding....

[PurpleCat]

First email allergy warning for tree pollen this morning! 

What does this have to do with food allergies? 

Need to cut back on certain fruits in my meal planning, DD's school lunches and snacks and cooking for the next 3 months.  And need to finish the turkey dinner meatloaf that is full of apples soon.

Spring has sprung!

[MaryM]

UGH - I Hate these CYA statements.  DD has a cold and has 3 shows starting tomorrow.  I really want to find a decongestant to help her otherwise she may not be able to perform....Triaminic could not guarantee that somehow milk, egg, peanut or tree nuts did not get into their products...really. I left a message for the nurse to call me back.  I am so upset.  2.5 months of rehearsal can all go down the drain.  She is home in my bed with the humidifier going and her saline spray.  She wants to be at school and isn't feeling awful but her voice is raspy and she is sniffling a lot.  Let s hope the rest today helps.

[hezzier]

Well, here's a positive to TNA...don't have to worry about getting Salmonella due to pistachio nuts

http://www.kmov.com/story/31435445/voluntary-pistachio-recall-due-to-salmonella-concern

[spacecanada]

I've been demoted again on the allergy shot schedule.  Ugh.  It's sad when what I thought was an epic fail three months ago is now a cheerful pass (though still an epic fail, just not anaphylaxis).  Injection site swelled up bigger than a toonie today (fail) and I had a very scratchy and lumpy-feeling throat (serious fail, though it didn't look swollen to the doctor), but this dose gave me scary anaphylaxis three weeks ago, so it's an improvement.  We're doing twice as many increments as prescribed and today we've added that I need at least two injections at each dose until I have absolutely no localized reaction before moving up.  I can tell the doctors are uncomfortable when they see me because of my severe reaction history.  It makes me uncomfortable too.  I cannot wait to see an allergist here and make some sense of this or at least get a better prescribed plan so the local doctors don't have to keep revising it because I'm so sensitive.  Fingers crossed the current plan actually works -- for a while, anyway.

On the up-side, because there always is one, I make myself Screamin Brothers ice cream sundaes every day I get an allergy shot.  Hey, whatever makes the day better.   

Another positive today: my husband is normally a snotty and itchy eye monster in spring and hasn't taken antihistamines or complained once since the big move.  Spring is in full bloom here with pollens flying everywhere.  He was taking double dose Reactine and very strong eye drops daily from spring through summer at our old address.  Fingers crossed he left whatever he was allergic to back in Alberta.

[LinksEtc]

My academic dh told me that there is somebody who might want to do health research w/me ... dh doesn't even know about my researcher thread, he just wants to get his hands on some NIH $ and knows I'm kind of into health stuff ...

this will probably not go anywhere, but hey, it may be worth a try ...

hmmm ... this guy wants to know more about me ... but how do I talk about what I have done when I have no boss & w/o just shouting publicly that I am Links!

If you have any suggestions, pls pm me.

See you later.

[spacecanada]

I watched the new Star Wars movie for the first time this weekend.  At the end, my husband asked me what I thought of it and this was my reply:

'I wonder what the Stormtroopers are allergic to.  It looks like they carry EpiPens on their back.'

You will never look at a Stormtroopers the same again.

[SilverLining]

Not sure whether I'm venting or bragging.

Next month we have an event to attend which will require semi-formal attire. I have none. Well, I have black pants. So we went shopping. First mall I found two shirts...one was black/gray/white and exactly what I wanted...short sleeve and not tight. The second was black, long sleeve, and tight at the bottom...exact opposite of what I wanted. The first looked good, but the second looked great.

As we were on the escalator leaving with my new top we were discussing what else we need. DH asked if I was carrying my regular purse, and I reminded him of another I have. I said it's big enough for my epi-pen, but not much else. And a woman ahead of us on the escalator actually turned to look at me and rolled her eyes. The bragging part is....I refrained for pushing her down those stairs.

[Macabre]

Lol.

[Macabre]

The AuviQ gave me more freedom for evening bags. For a while.   But yeah, I always buy evening bags with the criteria that my epinephrine will fit--and a lipstick. I have several little but long purses!