Welcome to My World

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Jolene likes to sit in the kitchen sink.

Every day I leave my house, I never know if I am going to come home. I could have an allergic reaction while in the community and end up in the hospital. Back in 2014 when I was still teaching, one of my students spilled milk in my lap. I have a severe dairy allergy and went into anaphylactic shock once the milk absorbed into my skin. I was intubated, and then spent several months in ICU on a ventilator along with kidney and liver failure.

This is how I live every day. If you think my dairy reaction is bad, my nut reaction is worse. It has now been over 10 years since I have had an allergic reaction due to something I have ate. All of my reactions have been from touch.

For example, if someone has been eating handfuls of almonds, then gets in an elevator and pushes a button, they have transferred nut oils to that elevator button. If the button is not properly cleaned, the nut oil will live on that button for up to 21 days before the protein breaks down.

If at some point in that 21 days, I get in the same elevator and push the button, I will have a nut reaction. How severe my reaction is depends on how much of the nut oil I absorb through my skin.

I always have what I call “allergy spots” on my skin from touch reactions. These are open wounds that sometimes bleed, sometimes leak clear fluid, and take several months to a year to heal. If I absorb enough of my allergen through my skin, I have the whole stop breathing and need an epi pen reaction that sends me to the hospital.

Every single day I leave my home, I don’t know if I’m going to touch something that is going to cause that reaction or not.

With current events, COVID-19 is operating on a similar basis. We have learned we can catch the coronavirus from surfaces. We can catch the coronavirus from asymptomatic carriers. Every day we leave our house, we don’t know if we are going to be exposed to the coronavirus or not because it is every where and it is invisible.

Welcome to my world with severe food allergies.

The world we are living in right now that involves masks, cleaning supplies and gloves is the world I live in every single day. Except instead of trying to kill coronavirus, I try to avoid nut oils and dairy that have the potential to kill me.

I was talking to one of my friends this week who made the comment to me that they can finally empathize with my disability of having several severe food allergies that react by touch. There is not much difference for me dealing between dealing with the coronavirus and my food allergies. Both are invisible things that yield the same result: intubation, a ventilator, and possibly death.

If my food allergies had an 80%+ chance of killing me before this started, I now have a 90%+ probability of death if I have a reaction during the coronavirus. 

While the coronavirus situation is not easy for anybody, I am hoping that the experience will give people a little bit of insight as to what life is like for people with severe food allergies every single day. 

This is a horrible way for people to empathize with what we live through, but here it is.

So the next time you complain about having to wear a mask and gloves when you go out, think of people who live with this concern every day. People with severe food allergies like mine go to work, school, and stores every day of our lives not knowing if today is the day we are going to touch something that causes a reaction that will send us to the hospital.

Hopefully the good hygiene habits of wiping down surfaces and washing hands will continue once the pandemic is over. It is not just COVID-19 that kills people, but things like nut oils too. You may enjoy that peanut butter sandwich, but to someone else it is lethal.

The Great Milk Conspiracy

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People with food allergies, particularly people with multiple food allergies, are food insecure. When you have multiple allergens to avoid, that means you have to buy a lot of specialty items. Specialty items are not only hard to find, but also more expensive. People with multiple food allergies are typically unable to use traditional food pantries unless the food pantry somehow caters to people with food allergies.

I have 5 of the Top 8 most common food allergens. My reactions are severe. My last year of teaching, one of the kids spilled their milk in my lap. It’s a simple spill, right? No big deal.

It was a big deal. The milk soaked through my pants. I absorbed it through my skin. I stopped breathing. I began to have a seizure. By the time I made it to the hospital, my kidneys and liver had started shutting down. I spent several weeks in ICU.

One of my friends recently said that they heard a newscast that food allergies are all in your head. If that was true, I would have wished that away and not spent so much time in the hospital followed by several long months of recovery.

My food allergies are nothing to joke about.

No, I cannot have “just a little bit.” No, I cannot “pick it out.” I cannot have any contact by any means, period. This includes no cross contamination.

I am like this with peanuts, tree nuts, dairy, egg and wheat. Of the five, my worst reactions are to almonds and dairy. No, I do not have celiac disease. I have an actual allergy to wheat, which is something completely different.

I cannot go into a Dunkin Donuts unless I have a death wish. Seriously. If I ever decide to attempt suicide, I am just going to walk into a Dunkin Donuts. A few years ago, Dunkin Donuts added almond milk. It is quite prolific. I cannot even enter into a Dunkin Donuts to use a bathroom at a thruway rest stop. Who knows how thoroughly the surfaces were cleaned? If I come into any contact with almond milk/almond oil, I react.

I cannot have “normal” cow’s milk (or goat milk or sheep milk or any other animal milk). I cannot have almond milk. I cannot have soy milk, because all soy milks have an almond warning on them.

I typically have  rice milk, coconut milk or hemp milk. Coconut is a misnomer. Coconut is not a nut, it is a drupe fruit and a member of the seed family, and is safe for those with nut allergies. Hemp nut is a misnomer. Hemp is actually a seed, and is safe for those with nut allergies.

These specialty milks are quite expensive. I typically get a half gallon (2 litres) at Aldi for $1.69. This week, Aldi was all out of my milk.

I like milk so that I can have cereal in the morning. I eat allergy-friendly cereal, of course. My medication requires me to take it with food. Mornings are a hard time for me to eat because I don’t feel like eating, and cereal is the easiest thing for me to gag down in the morning to take with my medication.

The past few mornings, I had to get creative with breakfast so that I could take my medication. It was not fun.

Today, I went to 6 different stores looking for milk.

At all 6 stores, there were walls and rows of “regular” cows milk. There were walls and rows of almond milk.

Was there rice milk or hemp milk?

Nope.

It was only at the 7th store that I found what I needed. Now, keep in mind, I typically pay $1.69 for a half gallon (2 litres). Today, at the 7th store, when I found what I needed, I paid $4.69 for 1 litre.

Now, that is quite expensive.

If I have to do this on a regular basis, then that means that half of my monthly food budget is going to be allotted just to milk.

This is partially why people with multiple food allergies are food insecure.

I am one of the privileged ones. I have a vehicle, so I was able to drive to 7 different stores trying to find what I needed. Imagine if you have to ride the bus, take a cab, ride a bike or walk to a store. What would someone in my situation do then?

Food is extremely challenging to find when you have multiple food allergies. This is why I always tell everyone I am not picky about what I eat. I will literally eat anything that won’t kill me. With so many food allergies and reactions so severe, I cannot afford to be picky or to partake in some sort of alternative diet such as vegetarian, vegan, keto, etc.

The rules are simple. Will this kill me if I eat it? No? Then eat it. If it will kill me if I eat it, then don’t touch it. I have actually not had a reaction to something I have eaten in almost 15 years. The 10+ reactions I have had in the past 15 years have all come from touch, or skin absorption.

If I did not have food allergies, then it would be very easy to live on a $30 per week grocery budget. I’d be having macaroni and cheese, sandwiches of all kinds, pizza, ice cream, you name it. I look at grocery store ads and fantasize about all the things I would love to eat if I did not have food allergies.

With multiple food allergies, $30 per week does not go far. I just spent $14.07 on “milk” for the week, which was about ¾ of a gallon. If I want a loaf of bread, it is $10.79. Allergy-friendly bread loaves are smaller than regular loaves of bread. I typically get 3 or 4 sandwiches out of an allergy friendly loaf of bread.

I have to pre-plan my days and be sure to pack enough food for where ever I may be. I cannot go out to eat – hardly anywhere in this area. It’s not like I can just pick up food on the fly or go to a convenience store and get a snickers bar if I’m hungry.

Maybe for my last meal. If I was on death row, I have a milkshake and macaroni and cheese on the list for my last meal, maybe I should add a snickers bar to that.

The great milk conspiracy comes from the fact that I went into 6 stores and found walls of regular milk and almond milk, but no milk for me. Do stores and manufacturers just not think about all the people who are allergic to both dairy and almonds? I did not even see soy milk at some of these places, not that I can have that either.

What is with this trend in almond milk? It is my worst nightmare. This is why I wear a warning label like a Gremlin.

You want to see how fast I can run, whip out a carton of almond milk. I’ll be gone in a flash. I don’t have a death wish today. No thank you.

Maybe I should just give up on specialty items. I mean, I’m sure if I was on food stamps that people would judge me for checking out with a 1 litre carton of hemp milk for $4.69 when I could get a half gallon of regular milk for $1.29.

More importantly, when did milk become a specialty item?

The dairy industry has such a hold on our food system that they are advocating for alternative milks to be called something different. The dairy industry argues that something like rice milk isn’t real milk and should not be called milk.

There are times when I think “I don’t care what you call it as long as I can put it in my cereal and it doesn’t kill me.”

There are other times when I think “Why is my milk less than your milk? I should have access to milk too, whatever form that may take.”

Who would have ever guessed that trying to buy milk would create such drama?

This is the first time I have had this experience with trying to find milk. I do have this experience with allergy friendly pasta and allergy friendly flour on a regular basis. Whenever I do find allergy friendly pasta or allergy friendly flour, I buy them in bulk. I consider them treats because they are so expensive and so hard to find.

Part of me thinks that things like milk, bread, pasta and flour should not have to be considered treats. They should not be hard to find. They should not be expensive. Those items should be staples. I should not have to drive to 7 stores to find what I need. Don’t most people go to 1 or 2 grocery stores? Why do I have to go to multiple stores looking for “specialty” items?

Maybe my thinking is all out of whack. But when you have a large industry like the dairy industry saying you can’t call rice milk “milk” because it doesn’t come from a cow, and it takes me 7 stores to find something to put on my cereal in the morning, we have a problem.

For now, the Great Milk Conspiracy can take a rest. I have enough hemp milk for my cereal for the rest of the week. I can tell you right now, that breakfast tomorrow morning is going to be amazing. I may have completely blown my food budget, but I can have cereal again. At least, until the milk runs out.