Thursday, January 23, 2014

Musings on the Suddenness of Death and Hiding Food Allergies

I'm kind of a mess today.

I was all set to write a perky post about discovering my former supervisor has food allergies! I shared the news this morning with her that my son had passed the pea challenge. She, in turn, shared that she has an anaphylactic nut allergy, autoimmune urticaria and idiopathic anaphylaxis. Who knew!

I launched into several minutes on FAHF-2 and how it will benefit her if the researchers are able to bring it to market. I could see her eyes start to glaze and her uneasy glance around the office. Even when you have these conditions  perhaps especially when you have them  you have to be careful talking too much about them. People judge.

The reason I'm a mess, though, is that I sit right next to a guy who died today. No, he didn't die right in front of me. It happened off-site, at a hotel where he was staying overnight. (He commuted from a town some distance away and kept a room at a hotel for nights when he didn't drive home.) He and I had also had conversations about allergies, as his wife has an anaphylactic allergic to milk. He referenced it quite often, brought food from home she couldn't have, wanted to share the pain and frustrations...but also not. There was always a point where he would shut down and stop talking.

It's so hard to get what we need. We need to talk about this stuff. And yet, almost all the adults I've ever talked with who have an allergy seem to hide that fact from others. In almost every case, I've found out by accident because of some random passing comment that only someone "in the club" would understand.

And now he's dead. Probably a heart attack.

My thoughts have been so random today. I thought "I should go to the funeral and take her an Epi-Pen. I know he said she wouldn't carry one. Now that she's the only parent, she really needs to have one." I thought "I should send her that box of milk-free chocolates for Valentine's Day that he isn't going to be able to send her now. I'm the only one who knows where to get them."

Of course that would all be really weird and inappropriate. Food allergies are not a secret club. I don't get to claim some special bond with this guy just because I had those conversations. I especially shouldn't be talking to a woman I don't even know, about her health condition that she may not have wanted her husband to share.

Relief and shame, all at once. It's what I think adults feel when they recognize someone understands their food allergy. They don't really want to talk about it, but they need to. It's sad to watch the conflict, and to see the self-censorship win almost every time.

I wrote a long, complicated post about the reasons food allergies attract this stigma. I promise that I will edit it and post it at some point. But today, I just wanted to reflect on how sad it is that the stigma is there.

I'll miss my work buddy. I'll miss that possibility of sharing and support. And, of course, I will think a lot over the coming days about the fleeting nature of our lives, and how we need to value every moment with our families.

We need to just have those supportive conversations and stop caring so much about what the judgers of the world think. Time isn't limitless.

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Monday, January 13, 2014

Another Food Allergy Bites the Dust

I think you can plot my Seasonal Affective Disorder by the number of blog posts I write in winter. I've been meaning to give you guys an update for weeks now, but then Christmas happened...and my daughter got pneumonia...and work got hard... And, here we are.

But I had to finally get a blog post up because I have happy news. My son passed yet another food challenge on Friday. This time it was green pea, notable because he failed a challenge for this four years ago. It's also in the dreaded legume family, all of whose members have has been really problematic for him.

The challenge itself was completely uneventful. Two peas, four peas, eight peas, then a cupful and he was done. He had no symptoms. I don't think cold peas for breakfast will be a common occurrence for him. However, it was wonderful to make him a Swanson chicken pot pie for the first time for dinner the night after the challenge. Being able to tolerate peas will also significantly broaden the soup and stew options he has.

I'm sure I seemed ungrateful when the doctor came in to discuss his pass and next steps. "Yeah, yeah, great, peas. Yadda yadda. But what about milk?" Last time we saw her, she said the plan was to do the pea challenge and re-run the milk numbers. This time, either she could tell how anxious we were to do the milk challenge or she really thought a sea-change in his immune system had occurred. Whichever it was, we're scheduled for an open milk challenge at the end of February. In the meantime, the instruction is to stop babying him. Not just a piece of cheese pizza or a spoonful of lasagna - he should eat what we eat. (Never mind that all of us are trained by now to avoid cooking with milk - we know what she meant.) Babying him. Point taken.

While we were walking out the door of the office, I admit it: I got a little weepy. I explained to my son that, while it may be his allergy, the precautions and lifestyle to avoid milk have affected all of us.

"If I passed, maybe you could focus on my sister for once," was his pithy reply.

Ouch! Serves me right for projecting my feelings onto his allergy. But sadly, he's right. I've tried my best to not make him the fragile child, but I suspect that I've failed. The time I spend on food allergies is much greater than any time I devote to my daughter's issues. It's always been that way. When her field trips and class parties rolled around, I was burned out and off duty. But it's hard to hear that the over-attention has negatively impacted my son. Pass or fail on milk, it's time to work harder on cutting the apron strings.

One other thing I wanted to mention: while we were waiting for the final timer to ding, we had time to review all the current RAST scores with his doctor. I wanted to know what the heck we do about all the other varieties of beans now that he's passed two."Go ahead and try them at home," was her answer. Even the Class 2 black beans? "Yep, give it a shot. I really think something has changed for him and all of these Class 2 and maybe even Class 3 levels are going to turn out to not be a problem."

From her lips to God's ear.

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