Occasionally, just occasionally, I become aware of how restricted my life has really become. Sure, intellectually I know it is restricted, and as a rule I just get on with things. But I seldom feel it. I seldom know it in my bones, in my cells.
My allergy is a game changer. It reaches into every single aspect of my existence. Every bite that I eat, every sip that I take, every pill that I pop, or injection that I allow, may put my life at risk, or even worse, cause brain damage.
This morning Attila and I discussed preparing a dish that we both love, on the weekend (which is one day, Sunday, at our house). One of the ingredients we will need is baker’s yeast. Luckily we have enough to prepare the dish, but it is the last of our supply.
I use either Fermipan or SAF baker’s yeast. These yeasts are not easy to find. The last time I drove eight hours to and from the flour mill, I bought four, one pound packages, and kept them in the freezer. They lasted for years! But now we are running out. The drive to the flour mill is daunting, and expensive. Shipping might be cheaper than travelling to shop in person. I looked at their web site, and they do not ship yeast.
I spent the whole of the afternoon searching for a place to buy that yeast. I found retailers in Canada who wanted more for shipping that the yeast was worth. I found retailers who would ship it from the USA for more than the yeast was worth. I did not find a retail outlet near the country house, or the little house in the city, where I might easily drive to pick up the yeast myself.
At last though, in one of the food forums I scoured, someone suggested an online retailer in Toronto who sells this baker’s yeast.
I called the retailer, and found that their shipping charges were quite reasonable. They have a flat rate shipping charge, so it was in my best interest to purchase all of the items I thought I might need from them at one go.
The retailer was keen to check with their manufacturers, to ensure that the items on my list were allergen free. We corresponded by email through the afternoon, until we had determined which items on my list were safe, and which items were not. I was just sending off my order, and payment, when Attila arrived home from work. The items should arrive in the next week or so. I was exhausted; this type of activity requires great care.
All of that effort, to purchase baker’s yeast, and one other baking ingredient, the rest were unsafe. A great deal of my time is spent trying to find food that will not harm me. It is getting harder and harder, as more and more manufacturers use preservatives to extend the shelf life of food, to increase profits.
Honestly, I think people with anaphylaxis should be eligible for disability pensions with a food/medication allowance, to allow them adequate time and resources to find safe, affordable food to eat, beverages to drink, and medications to take. So many day-to-day decisions are of life-or-death gravity for a person with anaphylaxis. That could only happen in a kinder, gentler society than the one I live in.
Luckily Attila is on my side. He is respectful of the danger I face, and diligent in screening every bit of food/beverage/medication that comes in the door, to ensure that it is safe. I am not easy to live with, but Attila thinks I am worth it.
Date: 9:00 PM EDT Thursday 23 October 2014
Pressure: 101.9 kPa
Visibility: 16 km
Wind: NW 8 km/h
“Life is like a game of cards. The hand that is dealt you is determinism; the way you play it is free will.”
1889 – 1964
I think your notion that people with your degree of sensitivity should receive disability assistance or support is meritorious, especially for those of you who live far from immediate medical treatment, where “too late” is the only result from the introduction of your allergen into your system. I know it wouldn’t happen in my country, but perhaps someday it might in yours.
By the same token, I think it might be far better for all of us if there were fewer adulterants in what we consume. I think that somewhere we crossed the line from preservatives which made things safer into the land where many are only added for convenience or profit. The world lacks balance.
Sorry you had to go through all that! Have you looked at amazon.ca? I notice that they have SAF bakers yeast, though I’m not sure if it’s the right one for you.
Amazon.ca is starting to have a lot more foods listed, so it might be a good idea to always have a look there for hard to find foods.
Love the pic of Lares, Tink and Elf!
Wow, I had no idea you had anaphylaxis and how intense that is. It must be like you are on guard 24/7. Have you always had this? I feel like I should never complain about anything ever again because what you face daily is far beyond what I could handle. Bless you Maggie. x0x0x0x0x0
Wendy, I not see Canada ever providing any support for those with severe sensitivities. I would like to see the food industry clean up its act, and stop using chemicals to enhance profit, but I do not see that happening either. There are small businesses all over Canada that do sell unadulterated food, but one must pay a premium price for that food, which is not an issue for the affluent, but becomes quite a challenge for lower income individuals.
Teri, one of my first ports of call on the search for yeast was amazon.ca. The yeast is listed there, but all of the businesses selling it were shipping it from the USA, and the shipping cost was $18 or more, making the product extremely expensive. The little Canadian company I found charged $1 more for the product than amazon.ca, and their shipping charge was $7 flat rate, so I paid that shipping rate for three pounds of yeast and two pounds of cocoa. The way it worked out in the end was fine by me, because I would much rather support the small, owner operated Ontario business, than a huge machine like amazon.ca. amazon.ca would NEVER interact with me to check the spec sheets on food items, or provide any kind of personal attention to my needs, but the small Ontario company spent an afternoon helping me find what I needed.
Nora, I was rushed to emergency with my first reaction in 1984, and have managed to survive for thirty years. That was in the days before epipens, and I was taught to use a need and syringes, made to practise giving myself shots. You are correct, I am on guard 24/7, and it has become part of who I am, how I exist, how I see the world. I am the human canary singing my heart out in the coal mine. I never forget though, that most of us are in this coal mine together.
I am lucky in some ways. My human interactions are filtered through my anaphylaxis, so that the friends and loved ones with whom I interact in person are amongst the most tolerant, love-based people in the world. Other interactions are fraught with tension, although much of it is well-meaning. The worst is when people want to cook for me, thinking that the allergen can be easily avoided/controlled, which it cannot; they feel insulted that I turn down their well-meaning assistance. But the reality is, this allergen is everywhere, and I am unwilling to put my very life in their inexperienced hands. They do not understand what they are dealing with, do not understand how little they understand, and although I can accept their ignorance, I will not risk my life to make them feel better.
For example, a typical tense social experience:
Visiting a distant elderly cousin, having a wonderful chat, and then she serves tea with homemade cookies. I inquire about the tea, which anyone might do, as it is a one ingredient affair this will work for me. The cookies are a whole other story though, danger everywhere. So, do I talk for a half an hour about my anaphylaxis by way of explanation for not eating the offered cookies, which usually would result in a trip to the kitchen to check ingredients, which would not cover all the bases, and I would still decline the cookies. Or, do I decline the cookies without explanation, adding tension to the situation, and believe me, declining host-offered homemade food creates a subtle tension. Or, do I find a lie to tell in order to decline the cookies, such as “I am on a diet”, which means I have lied during the interaction, and have sullied the experience for myself. I have to make this kind of choice when I am with people who do not know me well. It gets very, very old. Sometimes I am up for it, other times I am not.
Thank you for your insights and good wishes Nora, much appreciated.
Wow. Life is mysterious. And not fair! I would opt to just say “I’m allergic to almost everything, end of story” and just move on to another topic. I agree, there should be some kind of health care assistance for people with your situation. I can’t imagine having to go to all that expense and due-diligence just to survive another day! xxxx
Thanks Bex, for the good wishes. I wish it was as simple as “I’m allergic to almost everything, end of story”, but in my experience most people cannot leave it at that, with any degree of acceptance or comfort. There is always tension, no matter which approach I take, any out-of-the-ordinary statement on my part colours the undercurrents in the interaction. Occasionally it is worth my while to explain it in full to receptive and open minded people, which I do here, which helps me a great deal.
The thing about writing is that I get a chance to express the difficulties in a non-food oriented environment, which never happens in face-to-face interactions. Almost every social interaction has a “food element” involved, from “can I offer you a cup of coffee”, to “let’s grab a bite to eat”, to “come over for dinner sometime”… the list goes on and on and on and on.
What exactly are you allergic to, Maggie?
I have some sensitivities to foods that have made me ill but thankfully the only truly dangerous reactions I’ve had have been to insect stings/bites and CATscan contrast dye.
Teri, it is a chemical used in most processed foods to prolong shelf life and in many medications. The details are of no use to anyone but me, and since someone I worked with tried to experiment to see if I was just attention seeking, by adding a food that contained it to food I was about to eat, after I had checked it for safety (I caught her), I am inspired not to talk details. People with vulnerabilities get to see how low the species can actually go…
I am allergic to other things as well, but those are only allergies, and though they might make me sick, they won’t kill me.
“If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”
Maggie, you must have nodded your head with understanding when you read my post that started with that quote. And this post, so sadly illustrates the point of it.
As tiny as my observations may seem, they’re huge with questions: Do you live with a certain element of fear each day? Has the fear diminished over the years? Is there any such thing as a small reaction? (I confess that I had to consult Dr. Google about anaphylaxis.) Over the many years, have you a long list of dependable store bought products? Because you eat with purity, I would imagine you do eat well? Is this condition genetic? Did another illness trigger it? Am I asking too many questions?
But back to the quote above. My IPF is a horrible disease. My lungs are hardening, I’m slowly suffocating. Yet… to read about anaphylaxis, I’d grab my problem back in one breath. You are very brave. So much braver than me. Nothing is going to jump out and *get* me. I know my arc.
I always so appreciate your sense of fair play. Though I will on occasion pitch a fit about medical care – like my displeasure with the transplant evaluation process at Vanderbilt Medical Center in Nashville, TN… I WAS given an evaluation. When the doctors saw my records they fast-tracked me into an evaluation. The VERY day they declined to list me, my records were sent to Cleveland Clinic… that very day! In most countries in the world, transplant isn’t even in the medical lexicon. In countries that do offer transplant, I’d be waiting for an evaluation for months. Is medicine perfect in the USA? Of course not! But I really become weary of chronic complainers.
I have a worldwide network with other IPF patients. I’m in the best possible country in the world to have this disease. I rarely go to the IPF pages because the stories are so heartbreaking in Great Britain, Chile, Mexico, India. There are, of course, many heartbreaking stories in the USA, but not for lack of medical care. IPF pays no mind to international borders.
After my second hip replacement the doctor erred and didn’t send me home with a brief prescription of Coumadin. I ended up with 3 pulmonary embolisms. Nearly died. I’m a walking miracle. My mother died because her doctor prescribed the wrong medicine. My grieving was intense. But one morning I awoke and reviewed the scenario: my mother was suffering horribly, and though not intended, the doctor’s mistake was merciful euthanasia. Like so many others, I guess I have lots to complain about, but I try not too. We all have some stinky stories, but I try to remember to walk in gratitude.
Sorry to yak on and on. If my comments are too confrontational, I won’t be offended if you delete them. I only offer my gratitude per my perspective. My medical insurance is the same as anyone’s in the USA with Medicare. I do pay for an affordable supplement, but basic Medicare opens doors to nearly every facility in the USA for the finest affordable health care in the world.
Importantly, thanks for sharing. I will think of you every day – your ordinary days with extraordinary challenges and courage.
Reenie, first let me say that in no way do I find any of your comment confrontational. Questions are not confrontational in my view.
I do not live in fear every day, but every day I think about death. Carefree is something I cannot afford to do. Drunk and silly is something I cannot afford to do. When people say “lighten up”, I wish I could, and I understand that they have no idea what they are talking about.
I have lived through two hospitalizations after contact with trace amounts of the allergen. Because I knew what was going on, medical care was obtained before I experienced any permanent damage. I can say that entering the hospital emergency ward while having an allergic reaction is an amazing experience, they know what they are doing! I think those two incidences let me see medical care at its very height of efficiency.
I can depend on no food, beverage, or medication in the long term, nor week by week, store by store. Companies can suddenly decide to begin using the preservative, and often do. Every label, on every single thing that goes into my mouth, has to be read each and every time a purchase is made. It has been discouraging to see the allergen popping up in the most unexpected places, like rolled oats, really, why?!?!?! We get around that by buying safe items, so that I can grab anything out of the cupboard, or freezer here at home, and eat it, without checking the label. Home is my only safe haven.
The anaphylaxis is an acquired allergy, which began 30 years ago. At the time my youngest daughter was a baby. I woke up unable to breath properly, with serious swelling in my throat, covered with welts, and suffering severe chest pains. I had no idea what was happening to me, I thought it was a heart attack. The only medical number I had in the house was for Sick Children’s Hospital in Toronto, for my daughter. I called that number, and all they had to say was to go to the hospital immediately. I did, they got my reaction under control, I was tested, and then the process of training me to inject myself with adrenalin began.
I had no history of allergies when this began. I had perfect health when this began. The only current issue in my life at that time was a very bad relationship with my ex-husband – that may or may not have made me sick. The anaphylaxis did not go away when he did.
So here I am, all these years later, still coping with the damn thing.
The medical services in Canada have little interest in my condition, beyond treating me if I have a reaction. If I had to choose only one focus for them, that would be the one! They are good at it, responding to a reaction, very good! I am grateful for that.
I did read your recent journal entry with a lot of empathy! I find that when I am with Attila, and love ones, I can silently get on with my business, and do what I need to do. It is the chronic explanation, tension, and focus on what is wrong with me, that wears me thin. Being defined by one’s limitations can be very tiresome, as I am sure you know all too well.
LOL, Reenie, I don’t see myself as brave, I see myself as someone who loves life. I hope you don’t mind my saying so, but that is how I see you. And I wouldn’t trade conditions with you either Reenie, different skills for coping would be needed! You have seriously honed survival skills Reenie, your an expert!
Thanks to all for reading, and for the all the comments, all of them.
I am grateful to be able to choose my time for sharing about my condition. Most of the time I don’t think about it, but that doesn’t mean it isn’t there. Occasionally I need to share my experience, which is what this entry was all about. So, thank you all so much for being there, you do make a difference!
“Teri, it is a chemical used in most processed foods to prolong shelf life and in many medications. The details are of no use to anyone but me, and since someone I worked with tried to experiment to see if I was just attention seeking, by adding a food that contained it to food I was about to eat, after I had checked it for safety (I caught her), I am inspired not to talk details. People with vulnerabilities get to see how low the species can actually go…”
That made me ill, reading that. I’m so sorry you’ve ever been given reason to have to think that way. 🙁
Teri, thanks for the support, much appreciated.
Let me get the last word in our dialog: you are amazing! 🙂
Attila is a great man, and you are a great woman. I’m so lucky to have had you in my life for 27 years. Stay healthy!
I feel exactly the same way about you Steve-Paul! I even remember the exact moment when I first met you, the exact moment! BBQ at Beth and Mikes, good times!
Maggie, Thank you for helping me understand this condition more fully. This is quite a thread. The thing that stands out so much for me is that it came from out of no where. You are brave. Yes, you are. x0x0x0x
Very interesting to read, and the comments as well. I’m so sad some mean idiot tried to ‘test’ you by putting the ingredient in your food. No one should have to deal with hassles like that. We all should be able to know what’s in our food, even if only to eat healthier, let alone life threatening allergies.
I agree Joan, we should all be able to know exactly what is in our food, all of our food, and we should be able to know what it is as well, GMO, imported etc. It is not too much to expect, and I regard it as a basic human right.