Do your food issues rule your life?

[scsigrl]

I feel like I can't do anything without a crap load of prep. Even going to the park and stuff. Food, drinks, epi pens (on top of all the other stuff with two in diapers). I am just so totally fed up with it. I am having a pity party, I know. I am just sick of it all. We got more test results back today. Nothing good in them. Looks like we are dealing with Celiacs. Life long issues for my poor little man.

Vacations? I don't ever see that happening. Travel on a plane? Not thinking so. Overnights at the grandparents? Out of the question. Visits with others at McDonalds, not happening. Not to mention things like birthday parties and school.

And others, they just don't get it. I have never taken my kids to a restaurant. Even the grocery store scares me. I really just give up. I am not being overprotective. I am vigilant to the point that I want to drink. You all get it but others just don't.

[lil_miss_understood]

I go through phases of it ruling and not ruling, although we aren't dealing with life threatening allergies (*looking for wood to knock on*). What I mean is that sometimes it feels less stressful and other times it seems REALLY stressful. I have learned that life is MUCH less stressful with a meal in the freezer for a "backup", as well as safe cupcakes for birthday parties and such.
I'm not certain of the scope or severity of your restrictions and reactions (I'm assuming at least one IgE-ana reactive food based on the epis along with the Celiac dx) but I think it's terribly normal to go through grief and longing for the life you lived before food restrictions. And eventually, the restrictions become your new "normal"- but some part of you always wants to go back to the simplicity of not knowing, I think. Ah to just put on our blinders and plod along blissfully unaware of the secret life of allergy moms and late night research on biochemistry and gut flora and probiotics and ttG and...
I'm sorry you're down today. I'm sure some part of you knows and remembers that, just because you have food restrictions, doesn't mean that you can't have vacations or have the kids spend a night with grandparents. It just means that you have to prepare prepare prepare WAY more than the majority of other people.
I'm not sure that that helped.

[kjbrown92]

It's fine to have a pity party once in a while, just don't wallow in it. When one of my good friends found out that her two boys had celiac on top of type 1 diabetes, she yelled and cried, and lamented. Nothing would be the same, entertaining would be impossible, so would going out, etc. Two years later, they just went to Aruba with the boys, they go out to dinner, the older one goes to school dances, the parents even go away for a weekend once in a while (if someone is willing to watch the kids, and is trained for it). Yes, it takes planning. I am a post-it/index card girl. I've got lists for everything. We've been on vacation, and left the kids with my mother, who cooked for them. My DS goes to Granny Camp, which is a week long. I provide a lot of the food, but MIL makes some too. mine don't have ana allergies, "just" intolerances, but I am militant about food and cross-contamination (moreso than my friend with the 2 celiac boys, actually). It's sometimes scary, and always a PITA, but we do it. And yes, we can be jealous of those people who have it "easy". Then I think of someone, like CS, who has more food restrictions than I do, and an epi-pen, and non-supportive doctors, and I know that I have it easier than some.

[Therese's Mommy]

Yes, my dd's allergies pretty much rule our life. But there are times that I relax some and although things aren't perfect dd does survive and thrive. For instance, we went to a graduation party yesterday and of course there was food and lots of little kids eating said food. Normally I am a maniac running around asking all the kids if their hands are washed or asking the parents to wash their hands. Yesterday I just policed my family. You know what, dd had a blast. Yep, she was itchy. Yep, she was blotchy. Yep, she popped out some hives. I asked her if she was uncomfortable and she said no and ran off chasing this little girl that she was having a blast with (a little girl who had some of her dinner hanging out on her face and probably on her hands as well). I was around people that I enjoy and hadn't seen in a while and I was determined not to ruin it.

But, yes, normally I am a freak. And of course, I have no choice but to bring dd's food and the epi pen and Benadryl. I have been vegetarian for about 15 years. Now I am embracing eating and preparing meat because it is what my dd needs. I think about food about 90% of my waking hours (and probably a good part of my sleeping hours as well ). It is a bummer. Vacations and overnights are the hardest thing to give up. I would love to take my girls down to Baltimore to the aquarium, but it is more than a day trip for us, we really would have to stay overnight. It just doesn't seem all that possible right now. Perhaps soon, but right now it is out of the question.

Also, I am a total nut about food in our house. There is no eating of allergens outside of the kitchen, except if we are having a party and then I have no choice, but then I am a basketcase. In fact, we are changing what we do for birthday parties because I can't handle so many people traipsing around the house eating ice cream and what not. The parties are going to be much smaller now.

So, yes, food rules my life. It is my sad reality

[changingseasons]

Yep. Definitely rules my life. I get used to it, used to the routine... and then every so often we actually socialize with other people/families and it's just so depressing. First, because I can never relax and just enjoy being around other people because I'm constantly on the lookout for a hive popping out or DD touching someone else's food/cup/toy/whatever (or some well meaning person offering her food/drink.) And second, because it reminds me of all the things that we can't do. Like Kathy said- we probably could do most anything if I really spent some time and energy preparing, but at this point I just don't have anything extra after cooking just regular meals and researching test results, trying to keep my house together, etc.

So I feel your frustration. I wish all the allergy mamas here on MDC lived right next door to me, so that we could all hang out together and pretend we had a "normal" life.

eta: WAIT- you live near Crazyville?! Maybe we are neighbors after all!

[lil_miss_understood]

Originally Posted by changingseasons

eta: WAIT- you live near Crazyville?! Maybe we are neighbors after all!