The beginnings were mundane enough.
One day, I just could no longer put cheese on my burgers. Cheese made me feel awful. Sweaty, hot, nervous, and itchy. Sometimes it made my breath short and my throat itchy.
So I just quit asking for cheese on anything. I missed it, sure, but the cost was not worth it.
But it got worse.
One day, I had to omit the bun as well as the cheese, and then not too long after the burger as well.
And then the french fries.
And the drinks.
And then the side salads.
And then suddenly I was just no longer eating at all.
I don’t mean I went on a diet.
I mean I quit eating food.
And that’s how it began.
And somehow, it just never occurred to me at first to go see a doctor.
I kept thinking that one day, I’d just get hungry.
That I’d just get over it.
I spent 24 days without food. I lost 56 pounds and I almost died.
The weird part of this adventure was that no general practice doctor seemed able to help me.
I did not receive any treatment at all until I passed out – at 98 pounds – due to heart arrhythmia caused by a severe potassium deficiency and woke up in an ER.
Not that I did not eventually go and see doctors.
Bunches of them.
They all just shook their heads and looked at me funny.
They said my symptoms matched no known disease.1
I heard a lot of “Just eat something.”
I got a lot of psychological referrals.
And no one would admit me to a hospital or clear me for an IV.
I was drinking plenty of water.
I was urinating regularly.
That I had wholly quit pooping did not seem to bother anyone.
Until, finally, one doctor suggested allergy tests but said he could not get them until three months later…and yes, I do end up waiting months for appointments. I am uninsured so I am low priority.
Now after a year and a half of testing – with more testing to come, I know that I suffer from idiopathic anaphylaxis, as well as multiple chemical sensitivity syndrome and environmental illness. I am still being tested for hormonal changes, mastocytosis, and mast cell activation disorder.
I am basically epipen allergic to 150+ foods and most man-made chemicals.
I go through epipens the way teens go through fads.
I can’t eat processed food, wear rayon, drink from plastic bottles – and all I can drink is water. Even now.
My house is full of bamboo, real wood (unpainted), steel and glass. I have my own glass plate, bowl, and mug. I have one surgical steel knife, fork and spoon.
I can’t go to movie, restaurant, bar, or coffee shop. I can’t go anywhere where people may be eating or drinking, smoking, vaping, or wearing large amounts of make up, lotion, or cologne.
I read labels very very carefully, I go to farmer’s market’s, I keep track of food labeling laws (which totally suck in the US. I’ve eaten fraudulent food2 several times and ended up in the ER.) I can only eaten certain brands and thus have to mail order my food or drive fifty miles to a specialty shop. My food budget is the size of your car or house payments. Healthy food is NOT cheap. Ever.
I can’t shake your hand or touch you. I can’t even touch my partner unless he has had a long shower with no soap or shampoo.
I have 15 foods I can eat and they HAVE to be organic and I have to make them from scratch -after I clean the kitchen and microwave.
And don’t ask me how expensive it is to change over from everyday items to allergy safe ones. Also hypoallergenic means low allergy, not allergy free. I am allergic to many hypoallergenic products.
I’ve learned to cook from scratch and I’ve learned a fair amount of basic furniture building – unfinished wood products actually tend to cost more then finished ones for whatever reason.
Any new item I buy – food, shirt, chair – is a role of the dice, heads I can use it, tails, I wake up in an ER, or maybe don’t wake up at all.
That said, let’s get down to details.
Here is my average day.
I get up and peel back my 100% cotton blankets.
I put on my 100% cotton clothes. I start with cotton briefs and then my long pants.
(I can’t wear shorts because I cannot risk airborne pollutants such as smoke, pesticide or other air irritants touching my skin as that can start a reaction.)
Next I put on a cotton lined undershirt, cotton or linen shirt, socks.
I put on cotton boat shoes or my leather boots.
I can’t wear sandals or flip flops as I might step in something or brush a grass patch or lawn that has been recently sprayed with pesticide or fertilizers.
I strap on my med alert bracelet and two epipens.
I sit down at my glass and metal computer desk on my leather chair – first wiping the surfaces with a clean microfiber cloth.
I check my various social media, my mail and my calendar. Today I have reminders for visits to Great Smokies Medical Center – allergist and MUSC-Charleston – neurologist. I also have reminders to go by Trader Joes to buy a few things and to mail order more of my safe food ingredients.
I am lucky to live in a place with whole food, organic, and farmer’s market options but I still have to mail order some items to get them 100% pure. (Why do Americans insist on adding sugar to peas?!? And basically everything else?)
I go in the kitchen and dampen a sponge and wipe EVERYTHING down. I live with two other guys neither of whom have allergies, both of whom seem incapable of cleaning up after themselves.
I wash my hands for three minutes under hot water, scrubbing the fingers, palms, and under the nails the way my doctor taught me to.
Today’s meal? Salmon, peas, and white rice. (I am allergic to brown, oddly enough.)
I put 100% pure organic coconut oil in my cast iron skillet and warm it up. To this I add one organic Chilean salmon plank (I am allergic to sockeye) and turn it up to 6. I put white rice and coconut oil in a stainless steel pot of purified water to boil. (Our city’s tap is chloraminated – not that is not a misspelling, it means they add chlorine and ammonia to the water to kill germs and parasites. I learned that after being rushed to the ER after having a glass of water).
I do the same with the peas.
I cook the food and then wake up my partner.
I am not allowed to eat alone in case of accidental contamination. My allergies are that bad. I need to have someone nearby who can use my epipens in case I react too quickly to do so myself. (Which happens.)
We eat in the living room. I sit in my special chair. No covering, easy to clean vinyl and put out my special coffee table, unstained wood. My partner and I eat and talk and since I was lucky again today, the meal is uneventful.
When we finish, I take my dishes to my designated sink and wash them with a cotton washcloth and hot water and then dry them and put them in my special cabinet.
I put away my table after wiping it down and go to the bathroom to water brush my teeth. I can’t use toothpaste or fluoride or mouthwash so I brush a lot.
Then I go check my digital chore list.
I have several chores today.
I have to clean out and defrost my special mini-fridge.
I need to do laundry. Since I can only wear my clothes for one day, I have to do a lot of laundry. I wash it in hot water twice and then dry it.
I need to water the garden. I can do this if I wear my gloves. I need to check the air quality, tho. If someone is barbecuing or having a trash fire, I’ll need to wear my mask as well.
I like being outside. I usually do not need a mask. I have no natural allergies except to flowers – we have none – or foods. So I can hike, swim in a lake, garden, or go to the park without a mask. Usually.
I need to walk the cat. She is harness trained and it’s her only out door time.
If the temperature is above 80, I put on my water belt. I can’t wear shorts, tanks, flip-flop, etc. I’ll be dripping sweat before we are done. I need to stay hydrated.
I do my chores and come in to take a shower. I can’t wear bug spray, suntan lotion, or deodorant, so it’s a given that I stink.
I’ve quit going out on really hot days because people stare at me and tell me how bad I smell. You’d stare as well. Long pants, long sleeve shirt, socks, shoes, usually a hat and it’s 90+ during the summers since I live in the south.
After my shower, I sit around in my boxers reading my Kindle. I had to give away a 25 year collection of books because I was allergic to them – mold, dust, inked covers, acid treated pages, and so on. I have a few books again now as my allergies have slowly begun to fade where paper is concerned -Thank God(s) – but most of my collection is still almost entirely on my computer or Kindle.
I’ll write for an hour or two on a good day. On bad ones I surf the internet or watch a movie. I’ll email or chat with my online friends and apologize again to the flesh and blood ones.
(No, I can’t come to your wedding, the hospital, to meet your kid or puppy, to have coffee, to see your play. Yes, I am still sick. No, it is not personal.)
A pop-up reminder tells me I have to see my shrink tomorrow, Autism, PTSD, and other things…so I need to cook extra food and put it in my special cooler in the fridge for tomorrow. I’ll need my mask, gloves, and extra clean clothes. I’ll need to set my alarm for an early shower and shave (hot water, sharp razor -surgical steel). I’ll carry a knapsack with extra clothes as well as the food in case of spills or other exposures.
(Whoever put auto spray air fresheners in bathrooms deserves to freaking die. I actually will be on the look out for a slightly dirty bathroom or I’ll need to pee beside the road somewhere.)
I don’t want to go. It means risking my partner’s car, her office, and then sitting in the car while my partner eats on the way home. It means bathroom hunting and avoiding idiots who bath in their cologne or use eleven scented products in the shower.
I hate going out. We live in a chemically enhanced culture and despite the health risks good luck getting people to give up the makeup or the deodorant or the hair gels.
Or in getting Americans to not eat everywhere.
One of the first things I noticed getting out of the hospital was that Americans do eat or drink almost all the time. Walk through the park on a sunny day and count the coffees, sodas, popcorns, ice creams, snack bars, nut mixes, or what have you. Drive down Main Street, Anywhere and watch the coffee drinkers on the stoops or out window shopping. Note the people at outdoor tables with their drinks and food.
Even in grocery stores or public shops, carts come with coffee holders and free samples abound.
Americans are always eating.
And all of these people are also touching everything.
My life is a continual minefield of little traps.
Who touched this last? How can I open this door without touching the handle? Can I pee in here or did someone spray an air freshener? Was this food cooked on a safe grill? Did he just touch my food? Is there anything on this chair? Did anyone repaint recently? Will she come to my house wearing make up? Will the repairman use WD-40 even though he was told he absolutely could not do that?
I can’t sit on a park bench or touch a shop door handle or shopping cart with any assurance of safety. 3I am continually washing my hands. I even carry spare water for this purpose.
And do I get weird looks?
Man, do I ever.
And angry and disdainful ones as well.
I am eternally explaining about my allergies and people are still offended. They take it personally.
They just don’t get it.
And yes, I have to go to therapy. I do have mild PTSD and anxiety issues. I do suffer from depression. I wake up every morning knowing I could die that day, because I was careless or because someone else did not actually care that there are people like me in the world.
But I digress, back to my evening routines.
I usually wrap up my evening chores by around 8pm and then do fifteen minutes of exercise with my steel weights (unoiled) to try to lose a bit of the weight I gained now that I don’t go to swordfighting, jujitsu, go to the gym, or any other fitness space. (I can’t risk being indoors in those spaces or worse having other people touch me.)
Then I shower again before bed. (I shower a lot.)
Tomorrow this cycle will repeat, and if I am lucky, I won’t need the epipens.
And that is my life.
Every second of every minute of every hour of every day of every week, month and year is spent being careful, watching and washing my hands, apologizing to people lucky enough to be healthy and alternately wishing I was healthy or wishing I was dead.
So now you know.
So when you see me and the MANY other people like me out in the world, how about trying not to be a complete jerk, eh?
Not all illnesses are visible, most are not, and it would not hurt you to realize that and offer us a little patience and consideration.
1I now know this was not true. I was showing signs of classic Mast Cell Activation Disorder – a rare but certainly KNOWN disease.
2In the US lobster is rarely lobster, salmon can be trout, and grass fed Kobe beef almost never is. http://nypost.com/2016/07/10/the-truth-behind-how-were-scammed-into-eating-phony-food/?utm_source=pocket&utm_medium=email&utm_campaign=pockethits
3And since I am allergic to HandyWipes, wet naps, and sanitizers this problem has recently gotten worse despite evidence that all these products just make the germs more resistant rather than protecting the user.