I hate the term “special needs”, at least when applying it to myself, but it is my reality. Living with mast cell disease means that I have to adjust everything in life to suit my immune system, including prepping.
My day-to-day living is, in reality, a survivalist’s way of life. It’s a daily struggle for me and it’s mainly why we became homesteaders. Because of my propensity to have severe, possibly fatal allergic reactions to so many things we’ve been given no choice but to grow a lot of our own food and seek out “safe” alternatives for just about everything. From my bath soap to the types of fabric I can wear to what we feed the chickens (which I eat), it’s a real challenge.
The one thing nearly all of us with mastocytosis have in common is we have to prepare and eat our food as fresh and organic as possible and we can’t have any leftovers because of the histamine issue. Other than that, we typically have wildly different things that trigger us. For me it is corn, soy and dairy. They are my worst food triggers and I have to avoid them at all costs. As you can imagine, this makes life extremely difficult since they are in everything, including medication. Nearly all prepackaged food has one or more of these in the ingredients, as well.
It’s not just corn, dairy and soy, either. It’s citric acid, vinegar, nightshades, most berries, and a list of common additives, dyes, etc. that are off limits for me. I have to either have my medicines specially formulated at a compound pharmacy or use alternative mast cell stabilizers like quercetin and DIY antihistamines. Even Benedryl, a lifesaver for me, has to be dye free and I can’t digest the capsule it comes in. I can’t even wear my Medic Alert bracelet without reacting to it most of the time. I can barely tolerate the N95 face mask I have to wear out in public (I was masked up long before it was cool!).
All of this immunity nonsense makes planning for emergencies an even bigger challenge since many of the foods I eat and the medicines I need probably won’t be readily available if the proverbial SHTF. Many of them are difficult to source during normal times and many can’t be stored long term. Especially my food.
There are a few things, though, that I can freeze fresh and a few things I can store, thankfully. Like beans, rice, potatoes and flour. Of course it has to be the right kind of flour. I can’t use any that has malted barley added, and when I bake with it I can’t use yeast although I can substitute with baking powder.. as long as the baking powder doesn’t have aluminum. So I make my own baking powder using baking soda and cream of tartar.
I have been able to amass quite a bit of my safe foods for our emergency food supply but I am still trying to work out how to store enough water when I can’t have chlorine (not even in my tap water). We have a well with a high end filtration system on it which works great but for emergency water storage I need to find an alternative to the “just add bleach” advice I keep finding.
In the meantime, I’ve been stocking up on a specific brand of bottled water, one I can tolerate well, and hoping I can store enough of it for cooking, bathing and drinking for at least three months. Ideally I’d like to have a year’s supply of everything, including food, water and my ridiculously expensive medicines, but I’ll be happy with three months’ worth.