My husband lost his job yesterday. And it started over a year ago with an argument over my allergies.
This is why I took a break from the blog. We were scrambling to keep our heads above water because a group of adults were bullying us. And the only thing I wanted to write about could have cost my husband his job.
He lost it anyway.
He fought battles, was bullied himself, and eventually lost his job because his spouse has a disability.
I mean, it eventually would have been something else, so I'll write more about the allergy bullying and being scapegoated in the next post. For now, I need someone to hear that how dysfunctional this church was. And I found out just yesterday that they hadn't bothered reading his profile closely before they called him - and apparently they disagree with the bulk of his theology. And in our year and a half here, we were fighting an uphill battle on several fronts.
We both poured our souls into this community just to have them actively hate us. I feel stupid. Personally, I pulled their children's Sunday school out of the disaster it had become. I wrote curriculum that was better suited for the kids they had. I recruited teachers that would work better with the kids. I did artwork, made props, wall hangings, bought furniture and supplies, set up and cleaned up every week, taught half the weeks, led meetings, and single-handedly organized, set up, and ran both the annual community Easter Egg Hunt and the Birthday Party for Jesus.
On top of that, I built this church a website. And then I maintained it for the duration. They didn't have one at all, and if they really want to attract the younger people they say they want, they need a functional, regularly-updated website.
When they were in financial crisis, I ran an Easter fund raiser by myself. I donated the proceeds from an entire 2 day craft sale to the church's general fund. That sale went well. I wish I had kept that money now.
And I was also single-handedly running a comfort ministry. Every visitiation my husband did involving a severe illness, injury, hospital stay, surgery, family death, or other hard time, I sent him with one of my hand-made stuffed animals.
Not to mention, I attended every event, even when I disagreed with what they were doing or how they were doing it. I helped in every way I could.
In all, I put in an average of 20 hours a week, completely unpaid. And they never bothered saying thank you, let alone taking it into consideration when they tossed us aside.
I let them take advantage of me. In return, they talked about me and my
husband behind our backs and ran a whisper campaign, actively trying to get my husband fired.
And once again, we're facing the horrible reality - clergy don't qualify for unemployment benefits. The government treats and taxes them as if they are self employed. But they can be fired. And the process for finding a new church, especially the right church, can take years. Unless there's a miracle, we will be homeless by the new year.
We had an expert from the conference trying to negotiate a severance package on our behalf. They drew out the process for days and we got worse than our worst case scenario - they just plain fired him instead. This church, one that claims to be doing the work of Christ, one that has given a lot of money in the past to families needing help with housing payments, this church failed to take care of the two people who have dedicated the last two years of their lives to helping them. I have never felt so hated. And I don't know if I'll ever be able to trust anyone new again.
It took a year for us to find this call. In the meantime, we were newlyweds left with no choice but to move in with my in-laws for nine months of that year. This time, we're looking at similar options, except we bought a house when we moved here. And we met with the realtor yesterday - the market has gone down again and the house is worth $40,000 less than we paid for it. We still owe more than its currently worth. Our best bet is to do a short sale and lose everything we put into it. Worst case, we have to walk away and take the hit to our credit for a foreclosure. We don't have enough time to do anything else.
And I hate asking for things, I rarely do. But if anyone reading this is able to throw anything our way, even pennies, to help us stay in the house long enough to sell it before we lose it to foreclosure (and to help me continue to be able to pay for my life-sustaining medication), please click on the donate button in the right sidebar of this blog. If money is tight for you too, please pray we find a way out before things get even worse. I promise, when we are on our feet again, we will pay it all forward.
Thursday, October 31, 2013
Tuesday, July 30, 2013
For Natalie, For All of Us
I ran across this article this morning and want to uplift it as a clear example.
Natalie Giorgi was a teenager who knew how to handle her allergy. Her father is a doctor and was present. She was informed and cautious. This was not a child that didn't know better. She could have been me.
She tasted something by accident in a dark room at a party. Natalie immediately realized what she had done and responded in the best ways possible: inform a responsible adult and stay with them, monitor the reaction, inject epinephrine, see a doctor... And she lost her life anyway.
Its this kind of event that scares us. This is why we don't go to parties, or don't eat when we do. And the whole thing is so easy to avoid. Whenever you're planning a large event, its so much easier to just leave nuts off the menu than have this kind of emergency arise. And for all sorts of allergies, diseases, and other food restrictions, clearly label all food and have it in a well lit area. Dangerous ingredients often hide in even the simplest looking foods and dark rooms make it even easier to make a mistake.
Natalie didn't react for 20 minutes. They thought they were in the clear. "Natalie was monitored by her parents for 20 minutes and showed no symptoms. Then she vomited one time and had a shortness of breath. Her father then administered an EpiPen, an injection device used to deliver epinephrine, and gave her oxygen. Brothers said Natalie then suffered anaphylactic shock and cardiac arrest."
Reactions usually begin within minutes, but they can happen as long as an hour or two after exposure. Most people don't know this, so its common to assume that after 15 minutes if you haven't reacted, you're in the clear. Its wise to be cautious for several hours.
Natalie's father, Dr. Louis Giorgi said, "While our hearts are breaking over the tragic loss of our beautiful daughter Natalie, it is our hope that others can learn from this and realize that nut and food allergies are life-threatening. Caution and care for those inflicted should always be supported and taken."
Natalie Giorgi was a teenager who knew how to handle her allergy. Her father is a doctor and was present. She was informed and cautious. This was not a child that didn't know better. She could have been me.
She tasted something by accident in a dark room at a party. Natalie immediately realized what she had done and responded in the best ways possible: inform a responsible adult and stay with them, monitor the reaction, inject epinephrine, see a doctor... And she lost her life anyway.
Its this kind of event that scares us. This is why we don't go to parties, or don't eat when we do. And the whole thing is so easy to avoid. Whenever you're planning a large event, its so much easier to just leave nuts off the menu than have this kind of emergency arise. And for all sorts of allergies, diseases, and other food restrictions, clearly label all food and have it in a well lit area. Dangerous ingredients often hide in even the simplest looking foods and dark rooms make it even easier to make a mistake.
Natalie didn't react for 20 minutes. They thought they were in the clear. "Natalie was monitored by her parents for 20 minutes and showed no symptoms. Then she vomited one time and had a shortness of breath. Her father then administered an EpiPen, an injection device used to deliver epinephrine, and gave her oxygen. Brothers said Natalie then suffered anaphylactic shock and cardiac arrest."
Reactions usually begin within minutes, but they can happen as long as an hour or two after exposure. Most people don't know this, so its common to assume that after 15 minutes if you haven't reacted, you're in the clear. Its wise to be cautious for several hours.
Natalie's father, Dr. Louis Giorgi said, "While our hearts are breaking over the tragic loss of our beautiful daughter Natalie, it is our hope that others can learn from this and realize that nut and food allergies are life-threatening. Caution and care for those inflicted should always be supported and taken."
Thursday, July 25, 2013
Thoughts on My Recent Move
About a year and a half ago, I moved from Connecticut to Pennsylvania. I've moved before. This is my fifth state. I know that every location has its ups and downs, but, culturally, things are even more different here than I anticipated.
One of the ways in which I was surprised was the lack of understanding and hospitality around vegetarianism.
My previous experiences (primarily CT and NY) taught me that there is always a vegetarian option. It wasn't always perfect, many treated the vegetarian option as an afterthought. A lot of the time, we got stuck with pasta or some sort of squash based stir fry. I often found myself craving protein. But there was always something there.
Its clear now that I am one of very few vegetarians in the area. Unless I'm near the local university, restaurants have very little to offer me. And I need to be cautious because even things that appear vegetarian have often been cooked in lard or on the same grill as meat.
The local culture seems to dictate that you use lard where I had always seen butter. Animal stocks are added to dishes I never would have guessed. Things I never thought twice about are suddenly toxic: pie crusts, mashed potatoes, sautéed veggies...
And there seems to be a lack of understanding. Locals have assumed that chicken is not a meat. Or that if there aren't visible chunks of meat, it must be ok. They have failed to come up with a simple vegetarian option at all but one event.
It is incredibly awkward to be the vegetarian pastor and spouse in a community that doesn't understand. So much of a church community revolves around food. For example, two recent church picnics have come with invitations that say "the church will provide hamburgers and hotdogs, we ask that families bring a side or dessert." They complain when we don't eat with them, but none of them has considered supplying a veggie burger, and I can only trust the side I brought myself.
I have declined at least three invitations to formal events because they came with a card requesting your meal choice in advance. Not one has had a vegetarian option.
This is only one piece of the cultural differences, there are several other factors, but I have never felt so alone. I am so much in the minority that the local idea of hospitality actively ostracizes me.
One of the ways in which I was surprised was the lack of understanding and hospitality around vegetarianism.
My previous experiences (primarily CT and NY) taught me that there is always a vegetarian option. It wasn't always perfect, many treated the vegetarian option as an afterthought. A lot of the time, we got stuck with pasta or some sort of squash based stir fry. I often found myself craving protein. But there was always something there.
Its clear now that I am one of very few vegetarians in the area. Unless I'm near the local university, restaurants have very little to offer me. And I need to be cautious because even things that appear vegetarian have often been cooked in lard or on the same grill as meat.
The local culture seems to dictate that you use lard where I had always seen butter. Animal stocks are added to dishes I never would have guessed. Things I never thought twice about are suddenly toxic: pie crusts, mashed potatoes, sautéed veggies...
And there seems to be a lack of understanding. Locals have assumed that chicken is not a meat. Or that if there aren't visible chunks of meat, it must be ok. They have failed to come up with a simple vegetarian option at all but one event.
It is incredibly awkward to be the vegetarian pastor and spouse in a community that doesn't understand. So much of a church community revolves around food. For example, two recent church picnics have come with invitations that say "the church will provide hamburgers and hotdogs, we ask that families bring a side or dessert." They complain when we don't eat with them, but none of them has considered supplying a veggie burger, and I can only trust the side I brought myself.
I have declined at least three invitations to formal events because they came with a card requesting your meal choice in advance. Not one has had a vegetarian option.
This is only one piece of the cultural differences, there are several other factors, but I have never felt so alone. I am so much in the minority that the local idea of hospitality actively ostracizes me.
Tuesday, July 23, 2013
Airplanes
A few weeks ago, a friend asked me how I manage my allergies with air travel.
My immediate answer was that I just don't anymore. But its actually a more complicated answer than that. My decision on which airline to use, or whether or not to fly at all, involves research, risk analysis, individual airline's reputation for hospitality, seating arrangements, emergency procedures, and faith in strangers.
The research needs to be done every time I travel because policies are constantly changing. For example, in 2002, American Airlines became peanut free. Sometime between then and now, they almost completely reversed their policy. This is their current statement: American recognizes that some passengers are allergic to peanuts and other tree nuts. Although we do not serve peanuts, we do serve other nut products (such as warmed nuts) and there may be trace elements of unspecified nut ingredients,including peanut oils, in meals and snacks. We do not have in place procedures that allow our flight crews not to serve these foods upon request of a customer. We do not provide nut “buffer zones”. Our planes are cleaned regularly, but these cleanings are not designed to ensure the removal of nut allergens, nor are our air filtration systems designed to remove nut allergens. Additionally, other customers may bring peanuts or other tree nuts on board. Therefore, we cannot guarantee customers will not be exposed to peanuts or other tree nuts during flight, and we strongly encourage customers to take all necessary medical precautions to prepare for the possibility of exposure.
At the moment, Delta has the most reasonable policy. Its not perfect, but its the best out there right now: As of June 1, 2012, Delta will refrain from serving peanuts on your flight if you notify them at least 48 hours before your flight of your allergy. Until then, Delta will create a "buffer zone" of three rows in front of and behind customers with severe peanut allergies. People seated within this zone will be served non-peanut snacks – the rest of the plane may receive peanuts. Delta will allow you to pre-board and sanitize your seat.
It is true that I haven't been on a plane in over four years. The last trip I took was from New York to San Antonio and back for the annual APCE conference. I only got to go because the church paid. Air travel is expensive and our finances are so tight that we can't even afford a local camping trip, so traveling by plane isn't actually on my mind all that much.
But if cost weren't a factor, there are plenty of places I would love to go. And every once in a while, there is someplace I need to go.
Its scary. When I have had reactions in other public venues, I can escape. Its easier, and I'm more likely to survive if I can get myself outside or to an uncontaminated location. If I go into full on anaphylaxis, I need to get to a hospital as quickly as possible. Even within the time it takes to make an emergency landing, there's a good chance I wouldn't make it.
I missed my grandfather's funeral because I could not find an affordable, safe flight in time.
I have run into the full spectrum of people looking for and talking about safe flights. And its discouraging to discover that many people seem to have the opinion that people with my allergies just shouldn't travel. They are either incredibly selfish, or they don't actually understand what its like to live with this kind of disability. They talk about those little packets of peanuts like they are a God-given right. I've been told that it isn't fair to try to regulate what passengers can and cannot eat and if I don't feel safe, I just shouldn't fly.
I do wish that these people could live my life, even if for just a few days. I have a can have a life-threatening reaction by simply inhaling dust from across the plane. Severe food allergies are classified as disabilities for children. They get special accommodations and individual plans for school. But as an adult, there is nothing in place for me. I cannot decide to live my life in a bubble, as they suggest. Who would pay for it? I do not qualify for disability insurance. Not only do I want to experience the world, I must. And I depend on the people I encounter to show a little compassion and help me stay safe in public places.
And there are some people who get it, they recognize that they can live without the dangerous food for a few hours and value the safety of everyone on board.
Some people don't believe that peanut protein can be airborne or that the residue can cause a severe reaction. At best they will accuse us of overreacting and at worst, they have gone out of their way to try and disprove the person trying to protect themselves. These people are dangerous.
So, my process needs to start well ahead of time. If its determined that flying is the best option, I start by checking individual airlines' websites for peanut policies. Then, I make phone calls to the ones with the most promising statements. Even then, I try to book myself a safe seat. I prefer to sit in a corner. The fewer strangers with direct contact to me, the better. If I'm traveling as part of a group, I try my best to surround myself with people I know, for a fact, understand my situation. I will not take a flight that does not have assigned seating. I talk to someone at the gate before I board. I carry several doses of Benedryl and two Epi-pens in a clearly labeled pouch that does not leave me. I make sure at least one other person on-board, whether it be a travel companion or a flight attendant, knows about my allergies, where my epi is, and how to use it. I carry wipes on board and clean off my seat and tray before I sit. I have trained my bladder like a trucker, the restrooms could be dangerous, so I don't use them. I try to avoid contact with every person I don't know. I carry my own food (if they'll let me) I don't eat anything that isn't clearly labeled.
And, despite my efforts, I often deplane wheezy.
My immediate answer was that I just don't anymore. But its actually a more complicated answer than that. My decision on which airline to use, or whether or not to fly at all, involves research, risk analysis, individual airline's reputation for hospitality, seating arrangements, emergency procedures, and faith in strangers.
The research needs to be done every time I travel because policies are constantly changing. For example, in 2002, American Airlines became peanut free. Sometime between then and now, they almost completely reversed their policy. This is their current statement: American recognizes that some passengers are allergic to peanuts and other tree nuts. Although we do not serve peanuts, we do serve other nut products (such as warmed nuts) and there may be trace elements of unspecified nut ingredients,including peanut oils, in meals and snacks. We do not have in place procedures that allow our flight crews not to serve these foods upon request of a customer. We do not provide nut “buffer zones”. Our planes are cleaned regularly, but these cleanings are not designed to ensure the removal of nut allergens, nor are our air filtration systems designed to remove nut allergens. Additionally, other customers may bring peanuts or other tree nuts on board. Therefore, we cannot guarantee customers will not be exposed to peanuts or other tree nuts during flight, and we strongly encourage customers to take all necessary medical precautions to prepare for the possibility of exposure.
At the moment, Delta has the most reasonable policy. Its not perfect, but its the best out there right now: As of June 1, 2012, Delta will refrain from serving peanuts on your flight if you notify them at least 48 hours before your flight of your allergy. Until then, Delta will create a "buffer zone" of three rows in front of and behind customers with severe peanut allergies. People seated within this zone will be served non-peanut snacks – the rest of the plane may receive peanuts. Delta will allow you to pre-board and sanitize your seat.
It is true that I haven't been on a plane in over four years. The last trip I took was from New York to San Antonio and back for the annual APCE conference. I only got to go because the church paid. Air travel is expensive and our finances are so tight that we can't even afford a local camping trip, so traveling by plane isn't actually on my mind all that much.
But if cost weren't a factor, there are plenty of places I would love to go. And every once in a while, there is someplace I need to go.
Its scary. When I have had reactions in other public venues, I can escape. Its easier, and I'm more likely to survive if I can get myself outside or to an uncontaminated location. If I go into full on anaphylaxis, I need to get to a hospital as quickly as possible. Even within the time it takes to make an emergency landing, there's a good chance I wouldn't make it.
I missed my grandfather's funeral because I could not find an affordable, safe flight in time.
I have run into the full spectrum of people looking for and talking about safe flights. And its discouraging to discover that many people seem to have the opinion that people with my allergies just shouldn't travel. They are either incredibly selfish, or they don't actually understand what its like to live with this kind of disability. They talk about those little packets of peanuts like they are a God-given right. I've been told that it isn't fair to try to regulate what passengers can and cannot eat and if I don't feel safe, I just shouldn't fly.
I do wish that these people could live my life, even if for just a few days. I have a can have a life-threatening reaction by simply inhaling dust from across the plane. Severe food allergies are classified as disabilities for children. They get special accommodations and individual plans for school. But as an adult, there is nothing in place for me. I cannot decide to live my life in a bubble, as they suggest. Who would pay for it? I do not qualify for disability insurance. Not only do I want to experience the world, I must. And I depend on the people I encounter to show a little compassion and help me stay safe in public places.
And there are some people who get it, they recognize that they can live without the dangerous food for a few hours and value the safety of everyone on board.
Some people don't believe that peanut protein can be airborne or that the residue can cause a severe reaction. At best they will accuse us of overreacting and at worst, they have gone out of their way to try and disprove the person trying to protect themselves. These people are dangerous.
So, my process needs to start well ahead of time. If its determined that flying is the best option, I start by checking individual airlines' websites for peanut policies. Then, I make phone calls to the ones with the most promising statements. Even then, I try to book myself a safe seat. I prefer to sit in a corner. The fewer strangers with direct contact to me, the better. If I'm traveling as part of a group, I try my best to surround myself with people I know, for a fact, understand my situation. I will not take a flight that does not have assigned seating. I talk to someone at the gate before I board. I carry several doses of Benedryl and two Epi-pens in a clearly labeled pouch that does not leave me. I make sure at least one other person on-board, whether it be a travel companion or a flight attendant, knows about my allergies, where my epi is, and how to use it. I carry wipes on board and clean off my seat and tray before I sit. I have trained my bladder like a trucker, the restrooms could be dangerous, so I don't use them. I try to avoid contact with every person I don't know. I carry my own food (if they'll let me) I don't eat anything that isn't clearly labeled.
And, despite my efforts, I often deplane wheezy.
Tuesday, July 9, 2013
Promising Future
I just got back from spending a week with a group of 5th and 6th graders at camp. My husband and I created and led a conference around Dr. Seuss's The Lorax. For the past 11 years, I have been working almost exclusively with high school youth, so this was a big change. And I have to admit, I was nervous about my food allergies. I wasn't sure if the younger kids could safely live with me.
For seven days, we did everything together. We sang songs, planted trees, played games, worked in the camp's garden, swam, had sustainability talks, created our own worship service, attended other groups' worships, had campfires, made up-cycled sculpture, all slept in the same building, and ate our meals together.
The kids were fantastic.
They arrived on Sunday afternoon. Just before dinner, we had a brief discussion with them about my food allergies.
We told them that we would have two tables at every meal, and would be posting the camp menu ahead of time. There are both peanut butter and soy butter available at every lunch and dinner as an option for the kids that don't want the main dish. We told them that they may eat the peanut butter if they want to, but they will need to not sit at my table, and follow up by washing their hands, brushing their teeth, and not touching me for several hours.
They totally got it. All of the kids nodded, said they dealt with this at school all the time, and said it wasn't a big deal.
All week, they were excellent. Even the kids that didn't sit at my table chose soy butter over peanut butter for safety. They were actively keeping an eye out for other things containing nuts. They took initiative and asked kitchen staff what was in things and reported back to me whether or not the food was safe without being asked. On the night almonds did appear in the green beans, they elected not to even bring that dish to the table. None of them ever complained that they couldn't have something. They were happy enough with substitutes and other choices. And they wanted their community to be safe.
Those kids gave me hope. They get it so much better than adults usually do. Not only are we learning more about allergies and immune disorders, coming up with new treatments, and maybe cures, but there is a generation coming up that is empathetic and inclusive. If they continue to grow in this direction, the world will be a less frightening place in the future.
For seven days, we did everything together. We sang songs, planted trees, played games, worked in the camp's garden, swam, had sustainability talks, created our own worship service, attended other groups' worships, had campfires, made up-cycled sculpture, all slept in the same building, and ate our meals together.
The kids were fantastic.
They arrived on Sunday afternoon. Just before dinner, we had a brief discussion with them about my food allergies.
We told them that we would have two tables at every meal, and would be posting the camp menu ahead of time. There are both peanut butter and soy butter available at every lunch and dinner as an option for the kids that don't want the main dish. We told them that they may eat the peanut butter if they want to, but they will need to not sit at my table, and follow up by washing their hands, brushing their teeth, and not touching me for several hours.
They totally got it. All of the kids nodded, said they dealt with this at school all the time, and said it wasn't a big deal.
All week, they were excellent. Even the kids that didn't sit at my table chose soy butter over peanut butter for safety. They were actively keeping an eye out for other things containing nuts. They took initiative and asked kitchen staff what was in things and reported back to me whether or not the food was safe without being asked. On the night almonds did appear in the green beans, they elected not to even bring that dish to the table. None of them ever complained that they couldn't have something. They were happy enough with substitutes and other choices. And they wanted their community to be safe.
Those kids gave me hope. They get it so much better than adults usually do. Not only are we learning more about allergies and immune disorders, coming up with new treatments, and maybe cures, but there is a generation coming up that is empathetic and inclusive. If they continue to grow in this direction, the world will be a less frightening place in the future.
Thursday, July 4, 2013
Helminthic Therapy
A few times over the past 3 years, people have mentioned helminthic therapy to me. At first, I dismissed it, it sounded crazy. When it was mentioned again, I did some research and it sounded plausible. This last time, I was approached by a doctor (and former soccer teammate) who has seen helminthic therapy in action.
She said, "I've had a few patients with allergic/immune disorders try helminthic therapy, and the results are really wild. It's not a total remittance of all allergies but it does help with a lot of them, particularly food allergies... just wanted to send a note to say, it's not all hogwash, I've seen it work."
Now I'm curious. Not that its actually an option at the moment. My insurance won't cover it and to do it on my own would cost thousands of dollars. But, if eventually I have the money or the coverage, I would consider beginning helminthic therapy.
So, what is it?
The basis for helminthic therapy is in the Hygiene Hypothesis: several chronic inflammatory disorders (allergies, autoimmunity, inflammatory bowel disease) are increasing in prevalence in developed countries because a changing microbial environment has perturbed immunoregulatory circuits which normally terminate inflammatory responses.
The goal of the therapy is not to treat the symptoms of the disease, but to fix the underlying problem.
So, a person is intentionally infected with helminths (parasitic worms), their ova or larvae. Examples of helminths used therapeutically include Trichuris Suis Ova (TSO) and Necator Americanus (hookworm).
It appears that we co-evolved with these organisms, because they have almost always been present in our bodies. The sudden removal of these organisms from our bodies by modern hygiene is now believed by many scientists to be a major factor in the malfunction of many people’s immune systems. By re-introducing the helminths to our bodies, people with inflammatory diseases often find relief.
She said, "I've had a few patients with allergic/immune disorders try helminthic therapy, and the results are really wild. It's not a total remittance of all allergies but it does help with a lot of them, particularly food allergies... just wanted to send a note to say, it's not all hogwash, I've seen it work."
Now I'm curious. Not that its actually an option at the moment. My insurance won't cover it and to do it on my own would cost thousands of dollars. But, if eventually I have the money or the coverage, I would consider beginning helminthic therapy.
So, what is it?
The basis for helminthic therapy is in the Hygiene Hypothesis: several chronic inflammatory disorders (allergies, autoimmunity, inflammatory bowel disease) are increasing in prevalence in developed countries because a changing microbial environment has perturbed immunoregulatory circuits which normally terminate inflammatory responses.
The goal of the therapy is not to treat the symptoms of the disease, but to fix the underlying problem.
So, a person is intentionally infected with helminths (parasitic worms), their ova or larvae. Examples of helminths used therapeutically include Trichuris Suis Ova (TSO) and Necator Americanus (hookworm).
It appears that we co-evolved with these organisms, because they have almost always been present in our bodies. The sudden removal of these organisms from our bodies by modern hygiene is now believed by many scientists to be a major factor in the malfunction of many people’s immune systems. By re-introducing the helminths to our bodies, people with inflammatory diseases often find relief.
Tuesday, July 2, 2013
Separate
Our culture places a lot of emphasis on food. It seems to be at the base of our understanding of hospitality and has been for thousands of years. We offer drinks, snacks, and meals to guests. We go out for dinner, meet for lunch, have drinks together. Breaking bread with one another seems to be a long standing bonding experience. Food is sustaining and comforting. But for people like me, it can be frightening.
Sometimes food restrictions separate us from the bulk of society. Jews and Muslims have been following Kosher and Halal diets for thousands of years. Pescetarian, vegetarian, and vegan diets can be more difficult to follow and less understood in some areas of the world. Some people struggle with eating disorders that make social eating painful and awkward. And food allergies are on the rise everywhere. Any of these restrictions can make it difficult to participate in social events hosted by people and groups outside the restriction.
You don't realize how much of a reception or party takes place around the food table until you're trying to avoid it. It is very easy to be forgotten, or even outcast if you refuse eat at an event.
I would love to see some less food-centric events. I want to see fellowship outside the pot-luck, picnic, dinner party culture. Let's get together and do something fun.
Sometimes food restrictions separate us from the bulk of society. Jews and Muslims have been following Kosher and Halal diets for thousands of years. Pescetarian, vegetarian, and vegan diets can be more difficult to follow and less understood in some areas of the world. Some people struggle with eating disorders that make social eating painful and awkward. And food allergies are on the rise everywhere. Any of these restrictions can make it difficult to participate in social events hosted by people and groups outside the restriction.
You don't realize how much of a reception or party takes place around the food table until you're trying to avoid it. It is very easy to be forgotten, or even outcast if you refuse eat at an event.
I would love to see some less food-centric events. I want to see fellowship outside the pot-luck, picnic, dinner party culture. Let's get together and do something fun.
Thursday, June 27, 2013
Anyone, Anytime
I was seventeen when I had my first anaphylactic reaction. So, you can see why I am frustrated when people assume food allergies, peanut in particular for some reason, only affect children. Yes, most recorded initial diagnoses are in children. But most do not outgrow the allergy, they are still just as allergic as adults. And many people do not develop their allergy until they are older.
The onset of my allergies seems to correspond to the beginning of my other auto-immune symptoms. I'm going only on hindsight, I wasn't diagnosed with Hashimoto's until I was 28. But I had been dealing with the symptoms for several years (lack of energy, wild fluctuation in weight without change in diet or level of exercise, intolerance to cold, low blood pressure, dry skin, depression, swollen neck, etc.)
Research is still being done, but there seems to be a strong correlation between people who have auto-immune disorders and food allergies. My endocrinologist also seems to think there is a connection between the two. An auto-immune disorder is diagnosed when the body attacks its own tissue. Mine is organ specific, it attacks my thyroid. Allergies happen when the immune system attacks other things (pollen, dander, food) as if it is an invasive disease. It makes sense that if someone's immune system is already attacking things it shouldn't, it might be more likely to make the same mistake with something else.
That being said, auto-immune disorders are rare in children. The majority seem to be diagnosed in people in their 20s and 30s. And this is only one possible reason for an adult onset food allergy.
I think my late onset has given me a unique perspective. And it has given me some additional struggle. I was a senior in high school when had my first severe reaction and we figured out why I felt sick all the time. By the time we knew how severe the allergies were and how to handle them, I was living on my own. My parents never learned how to live with me as I am now. They don't seem to really get what kinds of precautions to take. Sometimes they forget entirely.
Other people that knew me as a child seem confused. I've heard "but you used to eat X." I've also discovered people that think I'm faking it. I guess, to an outside observer, it can seem strange. As a child I did eat peanuts and tree nuts without a problem. As a teenager, I babysat often and made peanut butter sandwiches and survived. When I was 15, I had a job at camp that involved a lot of washing dishes, many of which would not be safe now.
When I was 16, I started getting intestinal cramps every time I ate peanuts. I started to notice the correlation myself, but my mother and the doctor both thought the abdominal pain might be something else, so we looked for ovarian cysts. Then they thought it was menstrual cramping. Next, stressed induced. A year later, I ate Asian food cooked in peanut oil and had my first bout of anaphylaxis. I finally got to see an allergist and confirmed my suspicion.
Knowing my experience, some of the people around me still assume food allergies are a children's thing.
When my current church was debating and constructing its new nut-free policy, one of the suggestions was that we only keep children's events nut-free. The person suggested this knowing I was in the room, and knowing I was allergic. Which implies either they think I'm a child (I'm in my 30s), or they're telling me I'm not welcome. When I pointed out that all of the people with food allergies in our congregation happen to be adults (there are at least three of us), they gave up that particular angle. But I'm still not entirely convinced that person really gets it.
Anyone can develop an allergy at any time in their life. Our bodies are always changing. We need to get out of the mindset that food allergies are a children's disease, and start working to be inclusive everywhere.
The onset of my allergies seems to correspond to the beginning of my other auto-immune symptoms. I'm going only on hindsight, I wasn't diagnosed with Hashimoto's until I was 28. But I had been dealing with the symptoms for several years (lack of energy, wild fluctuation in weight without change in diet or level of exercise, intolerance to cold, low blood pressure, dry skin, depression, swollen neck, etc.)
Research is still being done, but there seems to be a strong correlation between people who have auto-immune disorders and food allergies. My endocrinologist also seems to think there is a connection between the two. An auto-immune disorder is diagnosed when the body attacks its own tissue. Mine is organ specific, it attacks my thyroid. Allergies happen when the immune system attacks other things (pollen, dander, food) as if it is an invasive disease. It makes sense that if someone's immune system is already attacking things it shouldn't, it might be more likely to make the same mistake with something else.
That being said, auto-immune disorders are rare in children. The majority seem to be diagnosed in people in their 20s and 30s. And this is only one possible reason for an adult onset food allergy.
I think my late onset has given me a unique perspective. And it has given me some additional struggle. I was a senior in high school when had my first severe reaction and we figured out why I felt sick all the time. By the time we knew how severe the allergies were and how to handle them, I was living on my own. My parents never learned how to live with me as I am now. They don't seem to really get what kinds of precautions to take. Sometimes they forget entirely.
Other people that knew me as a child seem confused. I've heard "but you used to eat X." I've also discovered people that think I'm faking it. I guess, to an outside observer, it can seem strange. As a child I did eat peanuts and tree nuts without a problem. As a teenager, I babysat often and made peanut butter sandwiches and survived. When I was 15, I had a job at camp that involved a lot of washing dishes, many of which would not be safe now.
When I was 16, I started getting intestinal cramps every time I ate peanuts. I started to notice the correlation myself, but my mother and the doctor both thought the abdominal pain might be something else, so we looked for ovarian cysts. Then they thought it was menstrual cramping. Next, stressed induced. A year later, I ate Asian food cooked in peanut oil and had my first bout of anaphylaxis. I finally got to see an allergist and confirmed my suspicion.
Knowing my experience, some of the people around me still assume food allergies are a children's thing.
When my current church was debating and constructing its new nut-free policy, one of the suggestions was that we only keep children's events nut-free. The person suggested this knowing I was in the room, and knowing I was allergic. Which implies either they think I'm a child (I'm in my 30s), or they're telling me I'm not welcome. When I pointed out that all of the people with food allergies in our congregation happen to be adults (there are at least three of us), they gave up that particular angle. But I'm still not entirely convinced that person really gets it.
Anyone can develop an allergy at any time in their life. Our bodies are always changing. We need to get out of the mindset that food allergies are a children's disease, and start working to be inclusive everywhere.
Tuesday, June 25, 2013
A Root of the Problem?
A few days ago, I was reading through the recent posts on notalwaysright.com, a website dedicated to insensitive, thoughtless, and just plain stupid things customers do and say. I ran across this post: You Say Tomato, I Say Epinephrine. And I think it solidified one of my theories on why people who haven't actually experienced life-threatening food allergies often downplay or dismiss them.
I found myself wanting to yell at the person who submitted this post, because they clearly didn't fully understand their actions.
I have seen other people do this too; they don't like a food, so they say they're allergic to make sure a restaurant, host, or caregiver doesn't give them any. This person even exaggerated further, stating that it was a severe allergy! And then went on to order a side item that contained the "allergic" ingredient, planning to eat it without consequence.
First, this person made extra work for the kitchen. Instead of simply leaving tomato off the sandwich, they needed to ensure that the grill, utensils, etc had all been completely cleaned and that their meal was kept a safe distance from any other tomato products in the kitchen. They may have needed to modify the recipe - ingredients hide in places you don't always expect or notice them.
This is why I am always so careful to be completely honest: I have life threatening allergies to peanuts and tree nuts. I have mild to moderate allergies to shellfish, goat milk, and red grape. I have intolerances to lactose and tuna. I am vegetarian. And I really dislike olives, probably as much as this person dislikes raw tomato. Good chefs understand this. They take every precaution with the allergies, and are careful with the intolerances. They cook on a vegetarian dedicated, or cleaned grill. They occasionally make mistakes with the olives, but olives won't actually make me sick or kill me. I appreciate the extra work they do to ensure my safety.
But my main concern is that people who don't understand allergies observe people like this. And I have to wonder if they think this is what's happening when I list my legitimate food allergies.
I have had people try to tell me I'm exaggerating, or just being picky. I have had people tell me to eat around the allergen, or "pick it out," not understanding that just touching the nut could give me a life-threatening anaphylactic reaction.
If we want people to better understand the severity of food allergies, we need to represent them appropriately. Please don't say you're allergic to something if you're not, especially if you are going to disprove yourself within minutes. Be honest, tell them you just don't like it. Chances are, they'll get it right. If they make a mistake, be forgiving, at least it wasn't something that could have actually hurt you. If you do have a true allergy, make it clear, people like this are out there.
I found myself wanting to yell at the person who submitted this post, because they clearly didn't fully understand their actions.
I have seen other people do this too; they don't like a food, so they say they're allergic to make sure a restaurant, host, or caregiver doesn't give them any. This person even exaggerated further, stating that it was a severe allergy! And then went on to order a side item that contained the "allergic" ingredient, planning to eat it without consequence.
First, this person made extra work for the kitchen. Instead of simply leaving tomato off the sandwich, they needed to ensure that the grill, utensils, etc had all been completely cleaned and that their meal was kept a safe distance from any other tomato products in the kitchen. They may have needed to modify the recipe - ingredients hide in places you don't always expect or notice them.
This is why I am always so careful to be completely honest: I have life threatening allergies to peanuts and tree nuts. I have mild to moderate allergies to shellfish, goat milk, and red grape. I have intolerances to lactose and tuna. I am vegetarian. And I really dislike olives, probably as much as this person dislikes raw tomato. Good chefs understand this. They take every precaution with the allergies, and are careful with the intolerances. They cook on a vegetarian dedicated, or cleaned grill. They occasionally make mistakes with the olives, but olives won't actually make me sick or kill me. I appreciate the extra work they do to ensure my safety.
But my main concern is that people who don't understand allergies observe people like this. And I have to wonder if they think this is what's happening when I list my legitimate food allergies.
I have had people try to tell me I'm exaggerating, or just being picky. I have had people tell me to eat around the allergen, or "pick it out," not understanding that just touching the nut could give me a life-threatening anaphylactic reaction.
If we want people to better understand the severity of food allergies, we need to represent them appropriately. Please don't say you're allergic to something if you're not, especially if you are going to disprove yourself within minutes. Be honest, tell them you just don't like it. Chances are, they'll get it right. If they make a mistake, be forgiving, at least it wasn't something that could have actually hurt you. If you do have a true allergy, make it clear, people like this are out there.
Thursday, June 20, 2013
The PBJ Fallacy
I have been told by several adults in different locations, under different circumstances that "we can't eliminate peanut butter (from our event) because its the only thing kids eat."
That's not true. While the PBJ is a favorite for some kids, it is usually not, and should not be the only thing they will eat.
In fact, most of the kids I have encountered understand food allergies quite well. They see it at school, at camp, at extracurricular activities. They know that peanuts can hurt or kill some of their friends, classmates, teachers, etc. And they are willing to forgo that food in public areas and/or in the presence of an allergic person.
To be honest, its not all adults. I've noticed that the culprits usually seem to be between the ages of 50 and 75. Maybe its a generational thing? I want to believe that they truly don't understand, but the message they are sending is that a picky child having to make a different meal choice far outweighs my personal safety.
Yes, children can be picky eaters. To be fair, we are born with all the taste buds we will ever have. And as we age, they slowly die off. So flavors are much stronger to children. Its only fair that many of them don't like some of the more potent foods. However, it is very rare to have a child that will only eat one thing. And if that is the case, shouldn't we be challenging that child anyway? They certainly cannot be getting all the nutrition they need from a single food item for months on end.
When hosting public events, its time to start considering safety and inclusion first. There are plenty of safe "kid-friendly" foods.
That's not true. While the PBJ is a favorite for some kids, it is usually not, and should not be the only thing they will eat.
In fact, most of the kids I have encountered understand food allergies quite well. They see it at school, at camp, at extracurricular activities. They know that peanuts can hurt or kill some of their friends, classmates, teachers, etc. And they are willing to forgo that food in public areas and/or in the presence of an allergic person.
To be honest, its not all adults. I've noticed that the culprits usually seem to be between the ages of 50 and 75. Maybe its a generational thing? I want to believe that they truly don't understand, but the message they are sending is that a picky child having to make a different meal choice far outweighs my personal safety.
Yes, children can be picky eaters. To be fair, we are born with all the taste buds we will ever have. And as we age, they slowly die off. So flavors are much stronger to children. Its only fair that many of them don't like some of the more potent foods. However, it is very rare to have a child that will only eat one thing. And if that is the case, shouldn't we be challenging that child anyway? They certainly cannot be getting all the nutrition they need from a single food item for months on end.
When hosting public events, its time to start considering safety and inclusion first. There are plenty of safe "kid-friendly" foods.
Tuesday, June 18, 2013
The Round Table
A lot of my experience has taught me that, in general, older children and teenagers are more aware, empathetic, and proactive about food allergies than adults. To illustrate, I'll share two stories from the same camp...
The camp chef knows me. I'm there at least three times a year with my food restrictions, allergies, and intolerances every year since before he was hired. He catered my wedding. He knows what I can and can't eat, as well as what I can't be near. But, sometimes he makes mistakes. Or doesn't quite get it.
When he does include peanuts or tree nuts in a meal, he makes sure to tell me at least a meal in advance. He has helped me set up a nut free table for these meals, and everyone at my table gets something else to eat.
First, the adult group. I was there in the off season for a planning weekend. All of the adults involved in making the summer run stay in one of the winterized buildings for three days, and we eat family style in tables of 8 in the dining hall. The chef forgot I was coming and our first breakfast was scheduled to be banana walnut pancakes. He assured me that we would have walnut-free pancakes for one table and everything would be fine.
I arrived at breakfast a little early and everything was as the chef said. We had a designated nut free table on the edge of the room to minimize contamination. I sat, with my husband, and waited for the rest of our group to arrive.
Every single person walked right past us and sat at one of our other two tables. There were a couple "sorry, I really like nuts" comments, but most people just ignored us. My husband and I ate that meal alone at a table set for eight.
I honestly don't think most of them realized what message they were sending. But I heard, clearly, "we think eating the nuts is more important than including you."
Another time, in the summer, I was in charge of a group of teenagers. I had spoken with the chef, and other members of kitchen staff, and had been advised that there would be peanut butter available at lunch as a back up option for picky kids, but that it would be kept near the salad bar and I am seated far enough away to not be a problem.
I was walking near the end of my pack of teens, headed toward the dining hall for lunch. As I approached the building, a small group of my youth burst out of the side door and ran toward me. "There's peanut butter on every table! You can smell it everywhere! Don't go in, we'll go talk to the kitchen."
I waited outside. I had no idea what to expect. I didn't know if I should let my counselors supervise lunch and go eat some of the safe snacks I had packed away in our cabin, or if I should forgo lunch and wait outside, or risk it go inside and wheeze all afternoon, or if my youth were really going to manage to persuade the kitchen staff to do something about it.
Within five minutes, those youth were carrying out clean plates, cups and utensils. Another few followed with serving bowls and platters of safe food.
Those teenagers didn't just remember and bring me safe lunch, they brought enough for themselves too. They sat with me at the round picnic table and we ate our nut free lunch together outside.
The camp chef knows me. I'm there at least three times a year with my food restrictions, allergies, and intolerances every year since before he was hired. He catered my wedding. He knows what I can and can't eat, as well as what I can't be near. But, sometimes he makes mistakes. Or doesn't quite get it.
When he does include peanuts or tree nuts in a meal, he makes sure to tell me at least a meal in advance. He has helped me set up a nut free table for these meals, and everyone at my table gets something else to eat.
First, the adult group. I was there in the off season for a planning weekend. All of the adults involved in making the summer run stay in one of the winterized buildings for three days, and we eat family style in tables of 8 in the dining hall. The chef forgot I was coming and our first breakfast was scheduled to be banana walnut pancakes. He assured me that we would have walnut-free pancakes for one table and everything would be fine.
I arrived at breakfast a little early and everything was as the chef said. We had a designated nut free table on the edge of the room to minimize contamination. I sat, with my husband, and waited for the rest of our group to arrive.
Every single person walked right past us and sat at one of our other two tables. There were a couple "sorry, I really like nuts" comments, but most people just ignored us. My husband and I ate that meal alone at a table set for eight.
I honestly don't think most of them realized what message they were sending. But I heard, clearly, "we think eating the nuts is more important than including you."
Another time, in the summer, I was in charge of a group of teenagers. I had spoken with the chef, and other members of kitchen staff, and had been advised that there would be peanut butter available at lunch as a back up option for picky kids, but that it would be kept near the salad bar and I am seated far enough away to not be a problem.
I was walking near the end of my pack of teens, headed toward the dining hall for lunch. As I approached the building, a small group of my youth burst out of the side door and ran toward me. "There's peanut butter on every table! You can smell it everywhere! Don't go in, we'll go talk to the kitchen."
I waited outside. I had no idea what to expect. I didn't know if I should let my counselors supervise lunch and go eat some of the safe snacks I had packed away in our cabin, or if I should forgo lunch and wait outside, or risk it go inside and wheeze all afternoon, or if my youth were really going to manage to persuade the kitchen staff to do something about it.
Within five minutes, those youth were carrying out clean plates, cups and utensils. Another few followed with serving bowls and platters of safe food.
Those teenagers didn't just remember and bring me safe lunch, they brought enough for themselves too. They sat with me at the round picnic table and we ate our nut free lunch together outside.
Thursday, June 13, 2013
The Wedding Problem
Its wedding season, so I thought I'd say a little something about the anxiety from the nut free vegetarian perspective...
Most invitations come with a bare-bones reply card. For example, the last one I received had a space for number attending and then the following two choices to be checked off for the reception meal: Chicken or Beef.
First of all, neither of those proteins work for me. I haven't eaten meat in so long that not only is it against my belief system, but it would make me horribly ill. But, even if I could eat one or both of those, how are they prepared? What comes with, on, or stuffed inside of the protein? Where is it prepared? What else is in that kitchen, and what is the likelihood of cross contamination? Beyond that, what other courses aren't you telling me about: nut studded salads, breads, desserts?
If I know the couple or the family well, its easier for me to have a conversation with them ahead of time and ask these questions. At least once, the bride actually thought of me before I asked and made sure everything was safe. But, many of the weddings to which I am invited are arranged by people I barely know, or perhaps don't know at all.
We all get invited to an occasional random wedding: a coworker, attending as a guest with a friend who knows the couple, a family friend that you only sort of know yourself, an extended family member you haven't communicated with all that much, etc. I'm a pastor's spouse. This happens all the time. Most of the weddings my husband officiates come with an invitation in both of our names.
I feel like I'm left with a handful of awkward choices:
Most invitations come with a bare-bones reply card. For example, the last one I received had a space for number attending and then the following two choices to be checked off for the reception meal: Chicken or Beef.
First of all, neither of those proteins work for me. I haven't eaten meat in so long that not only is it against my belief system, but it would make me horribly ill. But, even if I could eat one or both of those, how are they prepared? What comes with, on, or stuffed inside of the protein? Where is it prepared? What else is in that kitchen, and what is the likelihood of cross contamination? Beyond that, what other courses aren't you telling me about: nut studded salads, breads, desserts?
If I know the couple or the family well, its easier for me to have a conversation with them ahead of time and ask these questions. At least once, the bride actually thought of me before I asked and made sure everything was safe. But, many of the weddings to which I am invited are arranged by people I barely know, or perhaps don't know at all.
We all get invited to an occasional random wedding: a coworker, attending as a guest with a friend who knows the couple, a family friend that you only sort of know yourself, an extended family member you haven't communicated with all that much, etc. I'm a pastor's spouse. This happens all the time. Most of the weddings my husband officiates come with an invitation in both of our names.
I feel like I'm left with a handful of awkward choices:
- Go anyway. If there's a vegetarian option, choose it and hope for the best but prepare for the worst. Eat a light meal ahead of time. Take an anxiety pill. Pack Benedryl, an EpiPen, and a fully charged cell phone.
- Try to talk with whomever is in charge of planning the meal. If I don't know the person well, this usually goes badly. People that don't understand life-threatening allergies think I'm being picky and rude.
- Just don't go. Safest, but it has some major drawbacks. If the wedding is for a member of the church, I can be seen as antisocial, or worse as if I have something against that particular member or family.
Tuesday, June 11, 2013
The Beginning of Something New!
As an adult with life threatening food allergies. I have been frustrated with the lack of education, information, resources, and recipes aimed at adults. As a result of these parents of allergic schoolchildren communities, I have encountered an astonishing number of otherwise intelligent adults that swear food allergies only affect children.
These same adults are usually the people who do not understand that peanut and tree nut allergies are often life threatening. An allergic person can suffer anaphylaxis, hives, swelling, restricted airflow, and death, not only from eating the allergen, but also from skin contact and/or inhaling airborne particles.
I have been told that I am exaggerating, that I can "just eat around the nuts" or "pick them out," and that I "just shouldn't come" to community events because the people in charge aren't willing to give up their favorite cookie.
Recipe searches for "nut free" items usually provide alternative classic kid food. While that's a great thing, I would love to see more out there for the adult palate. One of my goals is to create a database of safe recipes, as well as resources on substitute ingredients that allow us to convert otherwise unsafe recipes.
In addition to my allergies, I am a vegetarian. Recently, mainstream vegetarian publications have been adding nuts to almost every recipe. I would love to provide an alternative: safe food for allergic and restricted adults, and resources for everyone who touches our lives (and our food).
My main goal is to provide an opportunity for education, so we can create more safe, inclusive environments for everyone.
These same adults are usually the people who do not understand that peanut and tree nut allergies are often life threatening. An allergic person can suffer anaphylaxis, hives, swelling, restricted airflow, and death, not only from eating the allergen, but also from skin contact and/or inhaling airborne particles.
I have been told that I am exaggerating, that I can "just eat around the nuts" or "pick them out," and that I "just shouldn't come" to community events because the people in charge aren't willing to give up their favorite cookie.
Recipe searches for "nut free" items usually provide alternative classic kid food. While that's a great thing, I would love to see more out there for the adult palate. One of my goals is to create a database of safe recipes, as well as resources on substitute ingredients that allow us to convert otherwise unsafe recipes.
In addition to my allergies, I am a vegetarian. Recently, mainstream vegetarian publications have been adding nuts to almost every recipe. I would love to provide an alternative: safe food for allergic and restricted adults, and resources for everyone who touches our lives (and our food).
My main goal is to provide an opportunity for education, so we can create more safe, inclusive environments for everyone.
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