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.
6 thoughts on “Survival Planning With Special Needs”
Sounds like a nightmare life and I wish you the best in the future. Your problems seem insurmountable but you seem to have adapted well to the circumstances, but no doubt there are days when you just slump into a ‘why me?’ mood. I’m sorry, no one can help you with this. Do you belong to a society of fellow sufferers. Can you not join together to make or source what’s
needed and perhaps get it somewhat cheaper? I presume you need to have a good insurance as you live in the USA. My thoughts are with you.
Thank you so much! It is a challenging life but I’ve grown accustomed to it and I am happier now than ever, especially since finally being diagnosed after a lifetime of not knowing what was wrong.Mastocytosis is so rare and it took until my 40’s to find the right doctor who had heard of it.
I used to fear waking up (or not waking up!) but now I look forward to every day because the lifestyle I’m forced into is actually quite nice. I have my lovely little farm here and my pups and the chickens and… it is just such a simpler life in so many ways! I’ve always been introverted so I don’t mind avoiding public places, which helps, too.
I used to run one of the most popular websites for mast cell disease but I stopped doing it and pulled back from the community when the pandemic started because it was too overwhelming. So many of us are suffering far worse than I am and it was emotionally taxing to be in constant contact with patients who were extremely sick and dying. I know it sounds harsh, but for my own physical and mental health I had to isolate myself from it all. I do still have a few friends online with my rare disease that I chat with occasionally, but I also have a son with this disease as well so we lean on each other.
As for insurance, we do have pretty good coverage but I rarely use it or go to the doctors anymore. Unless I have to renew my Epipen rx I avoid them as much as possible as there is little they can do to help and the medicines they have tried on me either don’t work, make me worse or cost way too much even with insurance. Compounded medicines are ridiculously high so I’ve learned how to compound most all of my own very effective alternative medicines myself and am VERY lucky they work well. For now, at least.
That can change though, and I can become allergic to any of these at any time. It’s the nature of this disease.
and there’s me grumbling to myself because I have to read the small print on everything to make sure there’s no hidden gluten (I have severe gluten allergy and epi-pens to the stand-by if necessary), but at least I know when we buy fresh fruit, veg, meat, fish & dairy, I can eat what I want.
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And I can eat gluten safely lol! It’s pretty crazy and has gotten worse with age for me. I’m also allergic to my own estrogen, so every month I have to practically OD on Benedryl for a week to get through my cycle. I’m counting down the days until menopause.
Wow…that sounds like a tough way to live. At least it sounds as if you’ve got it figured out, but still, it must be a huge challenge. Good luck with all that, I hope it somehow becomes easier. 🙂
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Thanks, it is much better just knowing what’s wrong with me and, more importantly, how to treat it! 🙂
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