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."
Tuesday, July 30, 2013
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.
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