Living with Food Allergies, 2013 and on

[CMdeux]

Man, when you carefully check the Amazon reviews for a fun-looking new cookbook and read reviews that glowingly describe "vegetarian-friendly" and "food allergy aware" about a product...


only to find out that not only are half of the recipes in the cookbook GLUTEN-FREE!! but that all but a tiny handful use eggs in large quantities, well over 25% of them include nuts as a key ingredient... and that of the 100 recipes, you can probably use exactly FIVE of them without major modifications.


Blergh.   


So.

Allergy-friendly... this word... I do not think it means... what you think it means.

Now trying to figure out who would like a mostly-vegetarian cookbook that features eggs, dairy, and treenuts in most recipes.  {sigh}  (Actually, I already know.  I just don't have a current street address. )

[jschwab]

That is so frustrating, CMDeux! You would think it would leave out in most of the recipes the 8 major allergens or have some built in modifications. I think Living Without does the best at having a mix of things to accommodate different people. Usually our hangup is that we are grain-free (for complicated reasons not necessarily all having to do with food issues) so allergy recipes which mostly contain rice or rice flour (which gives me a rash) are a no. And it's hard to find substitutes with the consistency of rice a lot of the time.

I should actually post some of our home recipes. Hubby is a devoted home cook and he has developed a lot of unique and inventive recipes over the years substituting nearly every ingredient with something else that serves the same function. He even makes a homemade grain free English muffin that is convincing and grainfree sourdough bread that is also very convincing. Those are all based on the magic of eggs, though . My greatest fear is that my next allergy will be eggs. I eat at least two per day, often many more.

[jschwab]

Hey, I had a normal day. It's been a month since my out of the blue major almond reaction. Every day since has been some combination of cleaning, stressing, researching foods, washing all my clothes and then figuring out that my laundry soap is covering me head to toe in rash and washing everything again, washing walls because there is almond oil on every surface I touch (from my lotion), reconfiguring the pantry and endless small food contamination reactions. But today I had a normal Saturday and my kitchen is finally under control and I have a plan for managing everything. I have meals planned for eight days and I can sit back and relax.

I am so relieved to be done.

[CMdeux]

   That is SUCH a good feeling.  I'm really happy that you had that today. 

[twinturbo]

I was in the ER last night, got bored so I pestered nurses with EMS questions. This time it was pediatric ECMO. In my state only one hospital in the largest city has it so I asked why and what if you need it in remote areas?

She said the main hindrance is the requirement of a highly specialized pulmonologist to run it. That led to air ambulances and her experience working them. The context was transporting patients. She said the ECMO is so large transporting it would require a cargo plane, something beyond an air ambulance at any rate.

According to her two air ambulance companies are reputable: REACH and Lifeflight. Later on I found they had recently merged. When asked about regulation she stated both are highly regulated by the FAA and very professionally managed. In the Pac NW there is excellent coverage between REACH and Lifeflight. One membership is covered by both in reciprocity, now they're one company so I can't see how that's not true.

I'm not sure how the membership works but according to nurse there's a REACH office in town. Assuming I'm not croaking I plan to visit them in person to get nitty gritty on how exactly they are enabled once membership is purchased, how they interact with EMS, and what kind of equipment they run. I want to know do they have helicopters for extractions as well as planes. You can't land a plane on a boat or remote area without a landing strip, KWIM?

I already asked paramedic contact last year about air transport from sea vessels. It was definitely a grey area but EMS can call in for air transport. The key there is getting that person to recognize the need to call it in. That's what I going to inquire with Lifeflight/REACH. I may be able to tap into an emergency dispatch manager to cross-reference all of this.

I think there was something else... forgetting at the moment.

Now I remember. I want to ask about medical transport to either destination or home if a flight is rerouted and grounded due to in flight medical emergency on a commercial carrier with a membership. The idea to not be stranded in some random city with no safe food sourcing.

[GoingNuts]

Why were you in the ER?

[CMdeux]

I want to know do they have helicopters for extractions as well as planes.

YES.  They serve {local hospital} and due to where our house is, we hear both LifeFlight and Coast Guard helicopters land.

Marine vessel extractions are often handled by USCG here-- though what medical interventions are possible there, I am not sure.  Must be some though, because obviously if they are rescuing someone with a swimmer and a basket, there's likely to be injury/hypothermia involved.  USCG copters are FAST, too.  They can be in our heliport here in forty minutes from a shipboard rescue, is my understanding.

Does that help?

[twinturbo]

Not with private. Two different sectors.

But if we do want hard numbers and facts on USCG and admiralty regulation--that I can get endless details on. I'm not sure that would help because the point of private is to have the ability to call upon it like a taxi.

On the other hand... would it help to know exactly when public rescue gets called? I can get that EXACTLY but it's going to cost me a three hour "chat". I can tell you having an overwhelming amount of military vessels vs. private vessels that I'm not sure that one is as advertised no matter what I'm told on how it's 'supposed' to work. Hence, my interest in private.

Has to do with the admiralty laws re: captain of private vessel and who controls communication. I was going to go through REACH first then I can follow up with father dearest, then paramedic former military contact who owes me one.

I'm trying to find a way to get us to Mt. Ranier or San Juan in the next few years, can you tell? 

[CMdeux]

Gotcha.

 

[TabiCat]

I knew it would come but it still hits hard. DS has always been ultra compliant on food. "The rule is h rule". Recently though, he is starting to question to want to push the envelope. The concept of may contains bothers him. And we descovered recently that he Remembers "he was allergic to egg but not now" . This worries me he might try and test himself. I still have no worries that he might try peanuts or peanut butter YET.

[jschwab]

All of my other funny food reactions since the almond reactions seem to have turned out to be cross-contamination and not the actual food. But the lanolin/wool issue is sticking as a real thing, meaning half of the clothes I love for chilly weather are no longer in play .

[notashrimpwimp]

Recent question I've been pondering: would the inability to breathe through your nose during a reaction signify anything? No running nose or sniffling, just no air...

[SilverLining]

In can indicate the nasal passage is swollen.  (Is that the proper term?)

I've had that happen many years ago.

[CMdeux]

All of my other funny food reactions since the almond reactions seem to have turned out to be cross-contamination and not the actual food. But the lanolin/wool issue is sticking as a real thing, meaning half of the clothes I love for chilly weather are no longer in play .

I feel your pain.  So much.    I love wool.  I just can't have it against my skin for any length of time.  I knit.  This is a tragic combination.   

[jschwab]

All of my other funny food reactions since the almond reactions seem to have turned out to be cross-contamination and not the actual food. But the lanolin/wool issue is sticking as a real thing, meaning half of the clothes I love for chilly weather are no longer in play .

I feel your pain.  So much.    I love wool.  I just can't have it against my skin for any length of time.  I knit.  This is a tragic combination.   

We're outside a lot and I have a lot of Smartwool socks, long underwear, etc.   Knitting without wool stinks! Incidentally, I also lost my Vitamin D supplements. I don't know how I am going to get that D this winter. I should have know it would happen since I've developed all the same stuff as my mom and she can't deal with wool. We have the same body with mine on a 30 year delay.