Tuesday, December 9, 2014

Utter Deprivation of Delights and Temptations

I was in line at Starbucks yesterday, and I took a good long look at the pastry case.  Delicious cake pops, muffins, lavish slices of pumpkin  bread, sugar cookies in bright cheerful holiday designs and colors.  Truly a collection of Earthly delights.  And I absolutely cannot eat any of it.  Because of this worthless sign on their pastry case:


The problem with signs such as the one Starbucks posts, is that it does not indicate WHICH items have which allergens.  But if you look at the food item behind their lazy sign, you can clearly see cookies.  Cookies are a terrible food if you are like me and allergic to peanuts, in fact, cookies are probably the single number one killer of people like me.  Horrible things.  So this sign plus cookies in the case means that when I see a display like this I look at it, and appreciate the colors and the treats.  And then I go without.  I wonder to myself: what it must be like to be 'normal' and be able to select and eat anything you care to ingest.  That's a crazy freedom I've never even experienced.

I guess most people don't have these severe dietary restrictions, so they probably wouldn't even think about it.  But everyday, I am bombarded with countless food displays, advertisements, restaurants, coffee hours, pot-latches, etc, all overflowing with food I cannot allow myself to eat.  If I don't eat, I won't die.  If I plan ahead, and make careful food choices, survival is a likely scenario.  

I only slept for like 3 hours last night, and I am kind of in a fog.  

I live in the Seattle neighborhood of Fremont.  Fremont is a fun, arty, funky, place.  Someone was telling me that Fremont had a lot of great places to eat.  I was confused.  Restaurants?  Huh?  I asked and they named off like 4 Thai restaurants.  Oh.  Okay.  I guess Fremont does have a lot of Thai restaurants, but I've never noticed because I cannot eat Thai food.  Thai food served in Thai restaurants in America has tons of peanuts, and the last time I ate at a Thai food restaurant I went into anaphylactic shock and almost died.  I walk and drive pass Thai food restaurants all the time.  They do not register to me as restaurants.  They are dead to me.  Places I'd rather not go.  Having a severe allergy, entire sections of reality are blocked off to my perception in this way.

There is this stupid chocolate company called Theo's Chocolates in Fremont.  It's a chocolate factory, and they give tours and make their delicious chocolate.  But they are a small company, and the peanut chocolates are made on the same equipment as the other chocolates.  Deadly cross contamination.  To me Theo's Chocolates does not exist.  I once biked past this horrible chocolate factory when they must have been making a peanut butter chocolate thing this summer.  My eyes started to water, my nose started to run, and I started gagging when I smelled the aroma of chocolate peanut candy.  This is a psychological problem.  The peanut allergy is not airborne.  But I can't even begin to describe the smell of peanuts when one has a peanut allergy.  It's like smelling death itself.  Theo's Chocolates is a pox upon the neighborhood from my perspective.  Theo's Chocolates is dead to me.  Maybe if they had allergy friendly practices and chocolates, I'd have a different outlook, but right now it's a worthless waste of space.

This summer, my little sister gave me a Groupon for this trendy new vegan restaurant called Plum Bistro.  It was so nice of her, and I looked at the menu on the website and it didn't seem to have any peanut containing menu items.  I was starving when I walked into the restaurant.  My blood sugar was low: I was shaking.  I started asking the waiter my questions:  Do you have any menu items with peanuts?  Can you accommodate a guest with severe peanut allergy who will die from cross-contamination.  And the waiter went and talked to the manager and the kitchen.  And the waiter suggested I leave because they could not.  What. The. Fuck.  This trendy restaurant can accommodate a strict vegan diet -which IS A CHOICE, by the way, but not accommodate A SEVERE FOOD ALLERGY WHICH IS NOT A CHOICE?!?!?!!

I agree with the vegans, I mostly eat vegan at home.  But it seems that every time I go out and try to enjoy an ethical vegan meal, I am refused accommodation, I am refused service.  The waiter at Plum Bistro told me that their food handling practices had rampant peanut cross contamination, and he basically advised me to eat elsewhere. I thanked him and left.  I was so hungry, I was faint.  I practically dragged myself out of the restaurant.  It is such a heartbreak, a disappointment to be refused service.  It brings to mind the shameful segregation period in American history, when blacks had to endure the heartbreak of being refused service at a restaurant.  Well.  That is kind of like my life.  Right now.  And the food smelled so good.  And the ambiance was nice too.  I really would have liked to have eaten there.  I really like to eat vegan food.  But I had to leave starving and sad.  I didn't want to die.  I didn't have a choice.  I suffered a lot in attempting to eat at this restaurant, and I wanted to call them out on their discrimination of people with disabilities: people with severe food allergies like me.

That's the entire angst of today's whiny blog post.  All these wonderful food establishments exist with their delightful selections.  And I can't partake in any of it.  Thus I suffer greatly.

I was on a date with a guy.  He was nice.  He was a vegetarian.  He was critical that I occassionally ate meat.  My response to him?  It was this:

You know what?  I really enjoy vegan and vegetarian food.  I don't buy a whole lot of meat, and when I do it's grass-fed, organic, all that.  I consciously choose to buy ethical meat.  You know what else?  I try to dine at a vegan or vegetarian restaurant, and historically, I've either been refused service, or lied to and gone into anaphylactic shock.  You know that delicious chocolate company, "The Dilettante?" You know their vast cases of wonderful chocolate? I cannot eat any of it.  I can't eat it because it is cross contaminated with peanuts and I could die.  What about that trendy new cafe "Regent?"  They have aisles of pastries, and I can't eat any of them and it's not a choice.  Can you even imagine what that must be like?  With your privilege of not having the concern of deadly food allergens to vigilantly avoid?  Personally I would love being able to eat food safely at vegan restaurants, but the reality is that right now I can't do that.  So don't criticize me for eating meat sometimes, I am doing the best I can living with an incurable disease that will kill me if I eat the wrong food.

That guy didn't get a second date.  I just wasn't that into him.  And it is bad manners to criticize someone for something they didn't choose.  But he did buy me dinner, a nice one.  And I was gracious when dining out with him as well, I ordered a vegetarian option: the Mac and Cheese.

Again, I realize that this blog post is whiny.  But I am writing because it's important to let people know that for a person with deadly food allergies, this impacts my life in a big way, every hour, every day.  And I would give anything to be able to be like other people.  To eat food without the concern of a deadly food allergy.

Every time I see food gorgeously displayed in a pretty glass case, I look at it.  Often the food is beautiful.  And 99% of the time it is off limits to me.  That gorgeous glass case may hold all the choices freedom has to offer a normal person, but to me it is a prison wall, something I could never eat.  I wish science would cure peanut allergy.  I am sick of living in a prison.  I would give anything to be free.

Sunday, November 30, 2014

Cookies of Death

This week I was saddened to read about peanut allergies killed two people.  A college student in California, and a teenager in Wisconsin.  Both of these people died because of peanut butter cookies.  And that is what I am going to write about today.  The most deadliest of threats that a person who has a severe allergy like me has to avoid.  Cookies.  Here's links to news articles:

http://www.washingtonpost.com/news/post-nation/wp/2014/11/28/college-student-dies-after-severe-allergic-reaction-to-peanut-butter/

http://fox6now.com/2014/11/28/milwaukee-teen-dies-week-after-allergic-reaction-to-peanut-butter-cookie/

For over 15 years, I have been seeking, searching, and reading every article about peanut allergy fatalities that I am able to find.  Morbid curiosity?  Not really.  I want to know exactly how deadly exposure to peanut protein occurs, and the chain of events that leads to the death.  And believe it or not, my extensive research has discovered the most dangerous food for a person like me.  And that food is cookies.  I remember a few years back reading about yet another peanut allergy death involving cookies, and I thought to myself: "Cookies.  Always the cookies."

Reading about these most recent fatalities, I anxiously think back to my life.  Had I put myself in a similar situation?  Was I in a kitchen with peanut products that were out?  I actually was in the past month.  I was at a friends and there was a brownie cut in half with a peanut center on the cutting board on the counter.  I told my friends about my allergy, and the brownie was put away, the counter cleaned, the cutting board and utensil put in the dishwasher.  But what about the crumbs?  The crumbs have been on the floor and I had been walking around in my socks.  I chilled on the couch with my socks on later.  Peanut protein could have gotten onto the couch.  I could have touched the couch, and then my face.  I could have died.

I really dodged a bullet.  Because what happened to Chandler Swink could have happened to me.  Reading about people who have died motivate me to take effective action to be as safe as possible living with this deadly condition.  Most of the time people are understanding.  But sometimes, people say very insensitive hurtful things about my allergy.  There was this one guy I was seeing, told me he liked to eat peanuts, and that he was often too lazy to brush his teeth sometimes, and that he didn't want to see me anymore because he found my allergy inconvenient and wanted me to be 'safe.'  Which was his choice, but the callous way he used my allergy as an excuse to discard me sucked.  It was a good learning experience for me, because I need to be surrounded by people who love and support me, and I don't need cruel selfish people in my life.

But let's get back to cookies, which is what this blog post is all about.  Cookies are a treat.  Cookies are a fun thing to share.  Cookies can often contain peanut butter.  Cookies can kill.  So where ever I go, if I see cookies, I am very, very cautious.  Here's another news story about a cookie that killed:

http://abcnews.go.com/Health/Allergies/college-freshman-peanut-allergy-dies-eating-cookie/story?id=18723777

Imagine the terror the people in Liberia go through with Ebola.  People touch a contaminated surface, then touch their face, they could get the deadly virus.  It's the same for a person like me who has a severe peanut allergy.  Imagine walking through an Ebola ward in Sierra Leone  without a hazmat suit on.  This is how I feel walking through your kitchen when you have peanut products in it.  Every surface is a potential reservoir for the protein.  I usually carry gloves, and 'glove up' to protect myself if I feel there is danger of the protein touching my skin.  I always carry my Epipen.  It is never more than 90 seconds away from my body at all times.  The 90 second rule, I call it.

My 90 second rule was inspired by a tragic peanut allergy fatality that occured in July 2008 in Magnuson Park, Seattle.  Daniel Sargent took one bite of a peanut butter cookie, and 90 seconds later, he collapsed.  I read everything about his death I could find.  Some things I discovered: he was airlifted to Harborview, where his body was cooled and sedated for 24 hours.  This treatment works for heart attack patients.  They discovered that it did not help save him.  Think about that.  If my heart stops beating for non-allergy reasons, I have a greater chance of being revived at the hospital than if I went into anaphylactic shock.  Here's a link:

http://wafeast.org/2010/09/conference-dedicated-to-daniel-sargent/

If you don't have peanut allergies, and you want to help a loved one with peanut allergies, here's a simple thing you could do that aren't all that inconvenient and will prevent your loved ones from dying:
-If you offer food, make sure that the food that you offer has an ingredient list that your allergic guest can read.  Another rule I have: If I can't read the ingredients, I don't eat the food.

It is difficult to live with this deadly condition.  It is important that we remember the people who have died.  And we need to support allergy research to find a cure to stop this horrible allergy.  Thank you for reading, and please subscribe to my blog.

Sunday, August 24, 2014

I Purchased an Affordable Epipen in Canada

I made a bunch of phone calls to see if the government regulatory agencies in the United States of America could help me get my Epipen covered at an affordable price.

I talked to Karen at the Washington State Office of Insurance.  She explained that since I get my health insurance through my work, it is a self-funded plan and her organization had no authority to look into my case.

Karen gave me the number to the Department of Labor, which oversees self-funded insurance benefits.  I called 1-866-444-3272 and I had a nice conversation with Andy at the Washington State Department of Labor.  Andy explained that it was up to the employer what benefits to offer to their employees.  He advised me to contact my employer and ask them for better coverage of life saving medicine.  He said that the government does not have any control on what employers offer in their benefit plans.

Andy also suggested that I ask for a generic Epinephrine injection prescription.  I told him that I wasn't really comfortable doing that.  The generic is not really user friendly, and the last thing that I want to have happen when I am dying of anaphylactic shock is confusion while trying to administer the medicine.  A lot of people, sadly mostly young children, have died because the person administering the epinephrine injection was confused and did it incorrectly.  There is the Auvi-Q epinephrine of course, but it's a brand name and $550, which is completely unaffordable.

I learned that our for-profit health care system here in the USA only cares about profits.

Our health care system does not care about people that it serves.  It exists solely for the purpose of generating more and more profits.  Profits for the businesses that are too cheap and stingy to give their employees reasonable benefits.  Profits for the drug companies, such as Mylan, who own patents that give them a right to completely overcharge people for Epipens.  Profits for the health insurance companies such as Aetna, who gouge me $133 every month, and then use the fine print of their plans to refuse to cover life saving medicine.

I learned that I don't want to support our corrupt unjust system in the USA.   You know what country has a fair and decent health care system? Canada!  It's a socialized medicine Shangri-La.  Canadian tax dollars go to free health care for all Canadian citizens.  Well, mostly.  It is more complicated than that, so check out http://en.wikipedia.org/wiki/Health_care_in_Canada if you want to learn more about their health care system.

You know what else?  The Utopian country of Canada is not only nice to Canadian citizens by giving them free health care, they are also nice to other countries who are sick and need help.  Just a few weeks ago, the Canadian government donated over 1000 experimental Ebola vaccines to fight the epidemic in West Africa!

http://www.nbcnews.com/storyline/ebola-virus-outbreak/bioethicist-canada-gives-ebola-vaccine-africa-how-will-it-be-n179871

Canada, by being the nice helpful country it is, just may save the entire human species from being wiped out from the Zaire Ebola virus.

So I want to support Canada.

I decided to travel to Canada and buy an Epipen there.  I called Robin's Pharmacy in Vancover, B. C. and I asked how much an Epipen would be.  They said I did not need a prescription, and that one Epipen would be $99.99.  Sold!

So last Saturday, my friend Elcaset and I drove from Seattle to Canada and I bought my new Epipen.  It was a fun road trip and I ate Poutine for the first time in my life.Yum.

Here is a picture of the beautiful Canadian sunset over Wreck Beach:


Here's a picture of me in Stanley park:


It was a totally fun road trip, and now I have an Epipen that isn't expired.  My new Epipen is so awesome it won't expire until November of 2015.  I need another Epipen of course, but now my doctor can write me a prescription for one and I can use Mylan's $100 coupon.  

The issue of course is that life-saving epinephrine injections in the USA are completely unaffordable to working class people.  There ought to be a law protecting people with deadly food allergies like me from being ripped off and gouged by big pharma corporations who overcharge for life saving medicine.  It wasn't my choice to have a deadly food allergy!  It isn't fair that I can't afford life saving medicine!

I intend to write to my Senator Patty Murray, and my Representative, Jim McDermott explaining my heart breaking situation, and imploring them to draft laws protecting working poor people like me from being financially exploited by evil corporations.  Writing my congressman probably won't do anything because my representatives get a lot of their campaign money from health insurance and the health industry.  Using the new greenhouse app extension on Google Chrome check out how much money the corporations and industries that are taking advantage of people like me are pumping into my representatives.


I think the only way to change our system for the better is to take big money  out of politics and overturn Citizen's United Vs. F. E. C.   If you live in Washington State, check out this website to join me to change our system for the better:

Saturday, August 2, 2014

I Can't Afford A New Epipen. I Could Die.

An Epipen lasts a year.  My Epipen expired at the end of March, 2014.

On July 28th, I attempted to get a new Epipen.  I ended up not getting it because it was too expensive.  A new Epipen would cost me $351.73.   That's about 30% of my paycheck.  The reality of my situation is that if I purchased it, I would not have had enough money for food.

I can't afford my life saving medicine.  I could die.


I didn't think it would be so expensive.  I have health insurance that I get through my job.  I pay $135 a month for my portion of the insurance plan.  I thought it would cover life-saving medicine like my Epipen.  I called Aetna, my health insurance provider.  I talked to Customer Service, and they transferred me to Prescription Customer Service.  The Aetna Prescription lady explained to me that my Epipen was considered part of my deductible.

'What?  How can life saving medicine be part of my deductible?'  I exclaimed loudly over the phone.  I really was hoping that this was a mistake, and they'd tell me they realized this was an error, and cover the Epipen.

I studied the plans carefully when I signed up last year.  I remember the $2500 deductible for health care services, such as hospital stays.  I remember looking over the prescription drug coverage, and I do not remember seeing anything that said that prescription medicine had any sort of deductible. I sadly accepted that I would just have to pay out of pocket each time when I saw my therapist & psychiatrist, because my plan said it applied to my deductible.  I can only afford to see my therapist once a year these days.  I probably need to see my therapist more than that because of what transpired next over the phone.

'I have prescription health care coverage!  There is an Rx Bin number on my card!  I've been paying $130 a month to Aetna for the past year and a half!  How is it that Aetna is refusing to cover my life saving medicine?'

The Aetna prescription customer service lady gave me zero compassion.  She told me that I needed to meet the deductible.  Then she told me that I was halfway to meeting my deductible for the year.  This wasn't a horrible mistake.  My worthless Aetna health insurance wasn't going to help pay for an Epipen.  And here I was, a severely allergic person walking around with expired medication that may not work.  I was up shit creek without a paddle.

I felt the full horror of my situation.  Having been diagnosed with Idiopathic Anaphylaxis in August of 2011, I don't even need to eat anything to bring it on, I could go into shock and die at any time for no reason.  My only hope for survival was the Epipen, and I was not going to be able to afford an Epipen.

Shock, disbelief, and total hopeless abject terror, are some of the emotions that I felt initially.  I felt like the lady had read me my death sentence.  Fear quickly became replaced with anger, and outrage at the injustice of the situation.  How dare Aetna take my money every month and then refuse to cover medication I needed to live.  And then I yelled at the lady over the phone in anger.  I do not remember what I said, I could have even said a swear word or two.  I went full on CAPSLOCK OF RAGE on this lady.  I think I remember telling her that I would tell the entire world about how Aetna was trying to kill me by refusing to cover the Epipen.  And then I hung up.

I feel bad for yelling at the lady, because it wasn't her fault personally that she worked for an evil for-profit corporation that had just essentially condemned me to death.  I am trying to avoid yelling at people in anger these days and handle my emotions with skill and equanimity.  But in that moment of fear and horror, I absolutely lost my shit.

When I calmed down, I tried to find options to help me pay for my medicine.  I called my doctor's office.  The helpful lady at my allergists told me that a lot of their other patients were having trouble affording life saving epinephrine medications, and she could send me a couple of coupons for a small discount.  She offered to ask the doctor to rewrite the prescription for a single Epipen.  I told her that was not a good idea.  My last anaphylactic reaction required 3 Epipen injections to stop my throat from closing up.  My allergic reactions seem to be getting faster and more violent each time.  What's the use of carrying a single dose, if it's not enough to save my life?  She agreed and said she'd send me the coupons on Wednesday.

I went online and filled out an online form for a 0$ Copay 'free' Epipen on the Epipen website:

http://www.epipen.com/en/copay-offer

Because I have my crappy Aetna health insurance, and it covers prescription medication I qualified only for a $100 discount.  But the fine print on that coupon said: This offer may not be combined with any other EpiPen coupon or savings offer.  I wasn't going to be able to use the coupons my doctor's office was sending me.   So my out of pocket cost for two new Epipens would only be reduced to $251.73.  Could I swing that?  Not really.  

The manufacturers of the Epipen, Mylan, have a patient assistance program that helps people afford their Epipens.  I called 1‑800‑395‑3376 and talked to a Mylan representative who asked me questions.  I didn't qualify for help through Mylan's program because my health insurance included prescription drug coverage.  What?  No it doesn't!  I mean, Aetna says I have prescription drug coverage, but it won't pay for my Epipens.  So that phone call and Mylan's patient assistance program is worthless.  You'd pretty much have to be homeless, and not have any sort of drug coverage to qualify.     

Out of desperation I called the number on Healthcare.gov  1-800-318-2596

The lady was nice.  She said that since I qualified for three dismal cheap plans through my employer, I did not qualify for any plans through ACA.  Great.  I told her my situation and she told me to call the State Office of Insurance for Washington at 1-800-562-6900.

They are open Monday through Friday and are closed today.  I called and left a voice mail. I will blog again when I have an update.  Thanks for reading.  Please subscribe to my blog.

Saturday, June 21, 2014

Hypoallergenic Peanuts are a Terrible Idea

I've been seeing many articles on the web recently about how researchers are developing a hypoallergenic peanut.  This company called Xemerge is hoping to commercialize an enzyme treatment that will reduce two key peanut allergens by up to 98 percent.  Here is the link to the article that I recently read:


http://www.medicaldaily.com/peanut-allergy-relief-hypoallergenic-peanuts-may-maintain-nutrition-and-functionality-real-thing

I think hypoallergenic peanuts could be beneficial to people who are undergoing immunotherapy under a doctor's supervison to reduce or eliminate their peanut allergy.  But the suggested uses go even further; the article goes on to say “Treated peanuts can be used as whole peanuts, in pieces or as flour to make foods containing peanuts safer for many people who are allergic,” Dr. Yu said."  Are you kidding me?  For people with severe peanut allergies, NO FOOD CONTAINING PEANUTS IS SAFE.  

I think it's great that science has figured out a way to reduce two known peanut allergens.  I would never eat this 'hypoallergenic' peanut: to me eating this thing would be like putting a gun to my head and pulling the trigger with a 2% chance I could die.  So not worth it.  I am extraordinarily sensitive to peanuts: in 2011 an accidentally ingested speck of peanut dust put me in the ER overnight and the ICU for a day.  

And even if most peanuts were treated to make them hypoallergenic, and I was able to eat them in small amounts, this would make me dangerously comfortable and complacent.  Hypoallergenic peanuts could make me lazy about being vigilant, and reading labels.  Until that one day that I eat something containing peanuts that weren't hypoallergenic.  I could die or get really sick.  

Hypoallergenic peanuts provide a false sense of safety.  People with severe peanut allergies need to be hyper-vigilant and mindful about everything they eat.  Being conscientious and creating a routine to avoid deadly anaphylactic food allergies is a good thing: it keeps me alive.  Hypoallergenic peanuts are not the answer.  

Hypoallergenic peanuts won't be safe for me until every peanut on earth is hypoallergenic.  And realistically that's not going to happen.

The truth is, I don't want to eat highly processed 'reduced-allergen' peanut products.

I want science to cure peanut allergies.  

I want to be free.  

Monday, June 16, 2014

Peanut Allergy Blog Survival Shopping Tips

Peanut Allergy Blog Survival Shopping Tips

This evening, I went grocery shopping at Trader Joe’s.  I am one of those peanut allergic people who does not happen to have a severe tree nut allergy.  Sometimes, when I go shopping I buy raw walnuts and cashews for when I feel I need protein.  And when I buy these nuts, I am completely unable to buy them from the bulk food section.  

Buying tree nuts in bulk, when you have a deadly peanut allergy can kill a peanut allergic person, due to cross contamination with peanuts.  It can also be messy and really uncomfortable.  Once, I ate Macadamia nuts I purchased in bulk from Central Co-Op, and about a half hour later, I broke out in severe eczema and was itchy for a week.  My skin looked like it was burned, and rashy itchy patches wept clear fluid.  It felt like I was covered in mosquito bites.  Whatever hell that I went through that week, it could have been worse, I could have died of anaphylaxis due to cross contamination.  So I never, ever, eat any tree nuts from the bulk food section.  

Unfortunately, because of this I have to endure paying more money for packaged nuts with labels on them saying if they were made in a peanut facility or not.  Most of the time, I make this choice when I shop, because I prefer to eat a sustainable, eco-friendly, plant-based vegetarian diet when I cook for myself at home.  And meat is awkward for me to cook, and I don’t really know how and don’t want to learn, because I cuddled with a chicken named Opal recently, and she was so sweet, and organic chicken was pretty much the only meat I taught myself how to cook and eat, so now I won’t eat chicken anymore, because it makes me feel sad to eat my gentle animal friends, so I don’t.  

I realize the previous paragraph was probably the most flakiest, hippy-dippy prose I have ever written.  But that is okay.  

I get big packages of tree nuts from Trader Joe’s.  Their nuts clearly state if they were made in a peanut facility or not(ornah).  I buy Trader Joes’s nuts and snack crackers for all of my protein-carb munchie needs.  But my anti-peanut allergy regimen does not stop when I purchase the food at the check out.  I learned that lesson the hard way.  The almost-died way.  I have to take additional steps to make the packaged food safe for my consumption because of a deadly mistake I made in 2011.

On August 16th, 2011 I purchased two cans of Blue Diamond Almonds from Albertsons on 130th & Highway 99 in Seattle, on my lunch break from work.  After work, I cracked open a can of almonds and started snacking on them with my bare fingers while I driving to my mother’s house in Kirkland, Washington.  I ate them happily, voraciously, and confidently: Blue Diamond Almonds are made in a peanut free facility.  The drive was about 20 minutes.  I arrived at my mother’s house and was talking and socializing with her.

Then my brother joined us and we continued talking.  I started to feel itchy.  I went into the bathroom, and there was a hive on my neck.  I told my family I thought I was having an allergic reaction.  My family told me I was crazy and freaking out over nothing.  My mom and my brother told me to chill out because I was obviously having a panic attack.

I went in the bathroom again, and I started itching my stomach.  The moderate itching resulted in a inordinate amount of blood at the surface of the skin: which I didn’t realize at the time, but I do now: increased capillary permeability was a sure sign of anaphylaxis.  I left the bathroom, my single lone neck hive had multiplied into hundreds more hives on my torso, neck, and arms.  My throat started to close up.  I told them to call 911, which they did, but my brother remained in complete denial.  

“This is not true anaphylaxis,” he reasoned, “this is not a rapidly progressing cascading reaction.  It has been like 15 minutes from when you got that first hive to now.  That does not fit the classical description of anaphylaxis.” I begged for the Epipen, and he refused to give it to me.  My mother was on the phone to 911, at least she believed me.  I actually was not doing this for attention because I was crazy, as they initially seemed to suggest.  I struggled to breathe because my throat was rapidly closing up.  

I was in such shock, I sat down on my mom’s kitchen floor and tried to stay conscious and keep breathing.  Four younger firefighters and paramedics arrived.  They started an I. V. and found it challenging and in the process sprayed my blood all over my mother’s remodeled kitchen shelves and floor.  My poor mom.  She looked on in shock and horror and disbelief.  I begged them for the Epipen.  My brother, an EMT, and in complete denial, explained to them that I was out of my mind and did not need it.  I continued to use all of my willpower and energy to breathe.  My throat continued to close up.  The I. V. was in my arm at that point and a good portion of my poor mother’s kitchen was covered in the blood my veins had sprayed all over.  

My mom’s expression at that time was one of shock and numbness, but it was mostly complete horror.  I will never forget that expression for as long as I live.  I continued to plead with them for an Epipen injection.

The tables on my anaphylactic reaction started to turn when the senior EMT Medic arrived at the scene.  He seemed to have the most field experience with anaphylactic reactions.  He was surprised that the medics had not given me the Epipen yet.  The younger EMT Medic seemed to protest, but he raised his voice and said,

“Nobody ever begs for an Epipen when they do not need it.  Even if they do need it they try to talk themselves out of it.  LOOK AT HER, she is exhibiting all of the signs of a severe allergic reaction: GIVE HER THE EPIPEN NOW!”

The nice lady medic unsheathed the Epipen and rammed it into my right quadricep.  It hurt like hell. The pain made me laugh. It hurt so bad it was ridiculous.  The Epipen is a huge hypodermic needle and it shoots deep into your muscle with the force of a metal spring.  Leaves a bruise that lasts for two weeks.  I am grateful to this pain because it is way better than the other option: death.

And then, as if by magic, breathing got easier.  I was loaded up into the ambulance, where I got a second shot of epinephrine.  At the hospital I received a third.  They also hooked up large doses of intravenous steroids and benadryl, pumped into my bloodstream every hour.  The E. R. kept me overnight for observation, and in the early hours of the morning I was transferred to the ICU of Evergreen Hospital.

I continued to breathe oxygen and receive steroids and Benadryl intravenously for most of the next day.  Around 6 they released me and my mom drove me back to her place, in her car, with my loving dog, Pork Chop, happy to see me alive, and licking my face.  The hospital told me to avoid all tree nuts, as they believed tree nuts were the cause of my anaphylactic reaction.  However, I was not so sure.  I was sure this was not sudden onset tree nut allergies.  It had to have been something else. But what?

I had a close call with death, and a 2 day hospital stay.  Why?  What was the reason?  The employer I worked for at the time was an allergy testing lab, and my subsequent blood plasma showed no new tree nut allergies.  I took that with a grain of salt, but I was still very curious.  I booked an appointment with my allergist at Virginia Mason because I wanted answers.  What happened?  What set off the anaphylactic reaction?

My allergist read my detailed notes of everything that happened that day when I went to see him in September.  He has a ton of experience with peanut allergies.  He received a grant from NIH to study peanut allergies.  He is kind of a genius when it comes to allergies, and what he told me was extremely important to my subsequent survival.   

My allergist agreed that yes, Blue Diamond Almonds were peanut free.  However, in his experience, his patients developed anaphylactic reactions from Environmental ingestion.  He explained to me that anaphylactic reactions were known to have been set off from tiny crumbs.  

He explained that someone who was shopping for groceries hours or days before me had been eating peanuts and had peanut crumbs on their hands and picked up the can of Blue Diamond Almonds, and decided not to purchase it, and put it back on the shelf.  Then I came along and bought the can of almonds.  When I opened the can, my fingers got tiny amounts of peanut protein on them.  I ingested this tiny amount of peanut protein when I snacked on the almonds and went into anaphylactic shock.  

The implications of his insight:  I have to wash every bag of food I eat, eliminating the possibility of anaphylaxis from environmental causes such as peanut crumbs.  This is a pain in the ass, but since I have started washing all food packages I buy, I have not experienced severe anaphylaxis.  

So my peanut allergic (and those who have peanut allergic loved ones) friends, please be vigilant, and take the extra time to wash all of your food packages before you open and dig into them because unseen, tiny amounts of peanut protein on the outside could kill, if they get ingested.  They almost did me.  

As always, thanks for reading.  Subscribe to this blog, because all my writing is helpful and rad, and check out my Youtube Channel, http://www.youtube.com/demosure  Also check out my Twitter:  @demosure.  And my Vine, I am “Denise Ure” on Vine.  Thanks everybody, be careful out there and stay vigilant.  Your fellow peanut allergy survivor, Denise Ure

Thursday, April 17, 2014

Science Has NOT Cured Peanut Allergies!!!

When I tell people about my severe peanut allergy, I come across a lot of people who tell me peanut allergies have been cured.  They have been reading the headlines about studies. In reality peanut allergies have NOT been cured. Really. There is no cure for peanut allergies at this time. The recent studies describe a few hundred children in clinical trials that have been temporarily desensitized to small amounts of the peanut protein -for now, so far.  But in post-pubescent adults?  There are no promising studies, and no cure, in  science, at this time.  But there is always hope.  That is the sucky reality of a person like me. 

Why are people telling me this nonsense, that 'peanut allergies have been cured?'  Because people read about the promising results of experiments and studies and think the results apply to everyone with the affliction.  

Case in point: Vsauce2, a popular Youtuber with 2,715,924 subscribers.  In a recent video(his Mindblow #78 Youtube video, published on February 28, 2014), he states that:

"Peanut Allergies have Essentially been cured in 9 out of 10 kids with a new treatment that gradually escalates the amount of peanut protein the body can handle."

My rebuttal to Vsauce2:

How can you say 'peanut allergies have been cured?'  What about the 1 child in that group of 10 that was not cured?  This is a misleading thing to tell your millions of viewers, all of whom are science enthusiasts, and some of whom work in the restaurant industry. 

In my opinion this is a downright dangerous and offensive thing to say in a media publication or in a youtube video.  Someone is going to watch it, who works in a restaurant, and then assume peanut allergy is not a problem anymore, and then not take people's allergies seriously.  And when someone's allergies are not taken seriously by people who work in restaurants, that person's life is in danger.  Here are a couple of links to stories in which peanut allergic people have died after eating food from restaurants:



My message to Vsauce2 and the media:  Knock it off.  Don't publish headlines touting the "Cure" unless a cure to peanut allergies is actually found that works for all individuals, children and adults, stricken with this affliction.  

Every time I take a bite of food, my life is in danger.  I could die.  If the bite of food I eat has peanut protein, I could die in as little as 90 seconds.  This is not a condition to take lightly, nor is it fun.  This is a serious issue and a big deal.  Please refrain from these sensational headlines that could jeopardize people's lives.  

Thank you

Wednesday, January 8, 2014

Danger at the Hotsprings Retreat -Surviving a Deadly Organic Vegetarian Feast

I went on vacation about six weeks ago.  Which was weird for me. Normally I just work. But I needed to Ctrl+Alt+Delete my stress, my brain, and my awareness. So I booked a three day, four night stay at Breitenbush Hot Springs in Oregon. Novelty and vacation is good for your brain like that.  The kitchen provides three delicious vegetarian meals a day.

I told them about my anaphylactic peanut allergy when I booked the trip. I told the people at the front desk when I checked in. Before dinner that night, I knocked at the door of the kitchen, and I introduced myself and explained about cross contamination and my peanut allergy. I tried to be as friendly and cute as I possibly could. I realize my allergy is inconvenient and being super nice and cute makes people like you. Most of all: it helps win people over, get them on your side. Being cute and nice helps you survive.

Living for over 33 years with an extremely severe food allergy I have consciously made the choice not to be demanding, insisting, nasty, or rude when I am explaining to people about the extreme severity of my peanut allergy. I am down to Earth. I am compassionate and sweet and I smile a lot. I sometimes show the cooks my Epipen and tell them about the time I was in the hospital for two days because I accidentally ingested a crumb of peanut protein so small I couldn't even see it.

I didn't choose to have peanut allergy and I'd really rather not have it. I hate it when I inconvenience others. I try to be really, really nice about it. I am really old and so far this strategy has been extremely effective.

I was having a great relaxing time on the retreat. I discovered a cool trick: at 9 at night, floating in the pool on my back looking up at the billions of stars. The air was so clear I could see the milky way galaxy stretch all the way across the sky in splattered white paint like a Jackson Pollack painting. Totally zen and completely beautiful. I was floating and looking up at the night sky. Not touching anything. Felt like I was floating through outer space! It really did. Awesome feeling. Great soak.

The next day, after breakfast, I went on a two and a half mile hike. Uphill and downhill and uneven terrain on frozen ground. I turned back at the river. The bridge over the fast flowing river was frozen with a thick layer of frost. And the rickety bridge only had one rail. I decided not to risk crossing the bridge. I could slip and fall into the fast flowing rapids below. If anything, my allergy has taught me caution, and I've tried to live mindfully and make wise choices, rather than living in constant fear.

When I returned to Breitenbush for lunch, I was starving. I was ravenous. I was hungry. And I wanted hot food. The springs are located in the mountains and the warmest it got on the hike was probably 20 degrees.

I went to the meal hall in the main lodge and I got in line. While in line, I leisurely grabbed the ingredients binder and started reading the ingredients. Then I read one word and my heart skipped a beat. The worst word I have ever read: peanuts. There were peanuts in the buffet food. There would be people eating peanuts at all the tables. I threw the binder on the table and got the fuck out of there. Relaxation and my sense of safety disappeared. I was kind of upset. I told everybody about this, and yet I am still in danger, I thought to myself.

It was too dangerous for me to be in the dining room. Little kids with peanut crumbs on their hands touching everything. And the peanuts were stir fried. That awful smell of cooked peanuts. I have smelled people who have died, and honestly I'd rather smell dead people than peanuts.

When I smell peanuts, I do not want to breathe. I quickly put on my warm clothes and I left the dining room and walked to the kitchen building. I knocked and then when I was inside, I told them about my allergy. Again. The lady cook was like, it should be fine, the peanuts are only in one dish. I started crying. This was a buffet dish that the peanuts were in. Deadly peanuts were in a tray next to every other food. All kinds of cross contamination hazards right there. Had I listened to the cook, who was trying to be nice to me I would be dead. This kitchen did not understand anaphylactic food allergies. This was so ironic, here they were serving organic vegetarian food to people because it was healthier and they didn't even get that they could kill people with cross contamination of an allergenic food.

I realized that I was not going to be eating with other people for this meal, and I started crying even harder. I was starving. I was not going to be able to eat. The main chef took me into the back cooler and she made me a big salad out of the separated ingredients in airtight plastic trays. She explained that this food was in sealed containers in the refrigerator while the peanut stir fry was cooking. This salad was going to be safe for me to eat. She was nice.

I took the salad and I carried it to a picnic table outside. I was not risking going into the peanut infested dining room. The temperature had climbed to about 25 degrees Fahrenheit (-5 degrees Celcius.) I was wearing insulated gloves, but it was so cold my fingers went dead. After three minutes of eating I could not feel them. They were white to the touch and numb. After lunch, my fingers eventually came back to life after a later soak in the hot springs, but it was painful. Needles and pins. I was very cold.

I was looking forward to a hot meal. I was looking forward to eating in community. I was kind of hoping to feel a little safe. I felt a little betrayed and hurt.

Although I wanted hot food and to be warm, above all else, I wanted to stay alive. To get my primary need of survival met, I was going to have to suffer. A lot. And I did. The good news is that I lived.

But the good news does not end at my mere survival. It keeps getting better: a nice lady from Bend, Oregon saw me sitting outside in the cold, and she took her lunch outside and sat next to me and talked to me while we ate lunch. Her name was Kiya, and she was so nice to me. When we were done eating, after I told her about my allergy, she took my salad bowl to the dish tray inside the dining room. She was a school teacher, and I am very grateful for her kindness. She made me feel better and kept me company when I was so very cold and alone.

The rest of the day, in the lodge, in the dining room, I was going to have to be extra careful. Extra mindful. I washed my hands after touching any surface in the building, and made an effort not to touch my eyes, face, or mouth. Peanut protein can cause anaphylaxis via contact allergy at these points. My relaxing retreat had turned into trying to avoid death by cross contamination.

Even with my extreme caution, and drastic measures, I could not sleep the night. My skin was so itchy. I woke up from bad sleep the next morning with eczema. Extremely tired.  I could not sleep well because I felt like I was covered with mosquito bites. That was the only symptom though, no asthma, no wheezing, no throat closing up feeling, it was definitely not anaphylaxis. Just a mild reaction. I am lucky. I guess I should have left the resort after the peanuts and drove home, but I didn't. I get eczema all over my body from skin contact with peanut protein. It hurts a lot.

So this is my tale: of lethal danger, of survival, of kindness and compassion. I hoped you liked it. If you or someone you love is affected by peanut allergy, please share this on every social media site that you frequent. My goal is to help other people survive this.

There is an extreme amount of suffering that comes with this allergy. Isolation. Loneliness. The feeling of having your trust betrayed by people who thought it was okay to put your deadly allergen on the buffet line.

My hope is that one day every state in the USA would require everybody that has a 'Food Handler's' permit to be educated about food allergies and the dangers of cross contamination. Thanks for reading, and please subscribe to my blog for more fascinating stories from the front lines of peanut allergy survival.