Tuesday, November 19, 2013

Last Tuesday Night in the Emergency Room -Peanut Butter Apple

Spent last Tuesday in the ER...

So I got home from work late on Tuesday night.  I walked my dog.  I threw a frozen pizza in the toaster, and I washed off an apple I purchased from Whole Foods. I was tired and hungry and did not do a very good job of it.  I put on a little soap and lightly rinsed.  Pizza smelled good.  The apple was a "Red Tango" apple.  I took one bite.  And then started freaking the freak out.  It tasted like that indescribable rich nutty taste of peanut butter.  Which is the most horrible taste in the world if you have an anaphalactic peanut allergy. My throat felt like it was closing up.  

But wait.  I grabbed my Epipen and held it to my leg.  I stopped.  Throat felt tight.  The throat feeling was just that: a feeling.  I needed more evidence before I shot myself up with that horrible thing.  

The throat closing up feeling alone is not a sign to warrant an epipen injection.  I need more than that.  The feeling of my throat closing up is a psychological problem, not an anaphylactic reaction.  

I needed one other symptom from my body to let me know if I needed the epipen.  From my digestive system (vomiting, diarrhea), my skin (swollen lips and/or hives), or respiratory system (asthma and wheezing).  

I threw my cooked pizza on a cutting board, put the poison apple in a plastic bag, took my epipens and insurance cards, took a benadryl and got in the car and started driving to the E. R. 

When I got to the E. R. I parked in the temporary check-in parking spot and I went to the registration desk of the Emergency room of the U. W. hospital in Seattle, Washington.  I told the lady at the registration desk that I was experiencing one symptom of anaphylaxis, and that if I experienced any more, I would need life saving medical care.  

The nurse behind her looked at me like I was nuts.  Most medical people suggest that if you even suspect an anaphylactic reaction, to administer the epipen and seek emergency medical care.  But I knew my body.  I have been allergic to peanuts for 33 years.  My body gave me tiny signs, but not the extreme symptoms that warranted emergency medical care.  

I didn't really want to spend the night in the E. R.  I know the drill. It has happened over 30 times.  Who wants to spend 6-10 hours in the Emergency Room?  When you are in the E. R. with an anaphylactic reaction you are a prisoner.  You have no freedom.  You are at the mercy of the doctors and nurses.  Usually I am in such bad shape that I am most grateful and I do not care about freedom or not.  I just want to live another day.  But tonight I was not going to subject myself to unnecessary imprisonment if I didn't have to.  I had things I had to do the next morning. I wanted a good night's sleep.  

I already have extreme medical bills that I am not able to pay.  I didn't want to add to my bills if I could help it.  I am planning to declare medical bankruptcy.  

When I was out of a job in 2011, I applied for Medicaid.  Extreme peanut allergy is a disability, and I needed medical care if I went into anaphylactic shock.  

Medicaid denied my claim.  They said my anaphylactic peanut allergy was not considered disabled enough to qualify. 

I got a low paying job (12.00 an hour).  After 90 days of working there I qualified for the company's cheap, terrible medical coverage.  The week before my health insurance coverage activated, I went into anaphylactic shock.  Twice.  One was an overnight E. R. stay with another day in the ICU.  Over $25,000 in hospital bills right there.  I can't afford to pay that.  I applied for "Charity care" because my job was so low paying and one of the bills was reduced to 4,000.  I still couldn't afford to pay that.  So I have bill collectors hounding me 5 times a day.  Kind of stressful.

All because I have severe allergies and I live in the United States of America.  

This country has great emergency health care.  I think health insurance companies are the worst, most horrible companies ever.  They will do anything and everything to weasel out of paying claims and stick you with the bill.  They have done this to me so many times.  I really don't like Obama care because we are now required by law to support evil corporations who kill people by denying them coverage.  

I believe that the only reasonable solution is to expand Medicare to cover everybody in the U. S.  Health care is a human right like drinking water.  There needs to be a constitutional amendment disbanding horrible health insurance companies and expanding Medicare to every citizen of the U. S. 

Anyways, in the meantime, in my poverty and continued struggle with paying my medical bills, I will declare medical bankruptcy.  I am not ashamed.  I am ashamed to live in this messed up country and unjust corrupt system.  

I intend to proudly, happily, joyously declare bankruptcy.  

I have peanut allergy and I can't afford to pay the expensive bills.  I wish I didn't have peanut allergy.  I really do. 

The last time I went into anaphylactic shock I actually asked my family NOT to take me to the hospital.  I told them that I didn't have health insurance and that I couldn't afford the emergency room.  Of course they ignored me.  I wasn't really being serious, I was just making a statement about how messed up our health system is for people like me.  

Anyways to the end of the story of the E. R. last Tuesday:  the symptoms didn't get worse, I left after about an hour and a half.  The half assed soapy wash I gave the apple must have gotten the proteins off.  The awful, rich, nutty taste of peanut butter in my mouth was likely the oils in the peanut butter, which are not enough to set off a reaction.  

This story is not medical advice, just my story.  I'll put in the standard disclaimer at the end of this.

If you have severe, life-threatening allergies and medical bills you can't afford to pay, I encourage you to declare medical bankruptcy.  Thank you for reading.  Please subscribe.

Thursday, September 12, 2013

Anaphylactic Shock and Panic Attacks: Identical Symptoms!! My Lunch Experiment of Terror to Know the Truth!

In addition to over 30 life threatening bouts of anaphylactic shock, I have also been diagnosed with Panic Attacks.

The freaky thing is: panic attacks and anaphylaxis have the same initial symptoms!!

Your throat feels like it is closing up and you feel like you are going to die!!

Is it true anaphylaxis?

Or is it just a major psychological and physiological event?

During lunch today I decided to try an experiment and record my experiences to see exactly how identical anaphylactic shock and panic attacks actually are.

DO NOT TRY THIS AT HOME. If you are my parents, stop reading now.

I undertook this experiment on myself only because the data it would yield would far outweigh the risks. And I currently own two new Epipens, and have been practicing mindfulness meditation for over two years. I felt up to the task of recording my experiences objectively without judgment and responding accordingly. I have not have an actual panic attack in years. No way was I going to let my mind be overtaken by fear.

My motivation for the lunch experiment comes from listening to stories of other patients who donate blood at Benaroya Research Institute. Jennifer Heaton, the study Coordinator was telling me about other peanut allergic donors experiencing terror and the symptoms of their throats closing up when peanuts are eaten around them and in the same room.  One blogger,has continuously blogged about how her 'throat closes up' and she 'cannot breathe' and goes into “anaphylactic shock” when peanuts are nearby.

As a science enthusiast, these accounts make me extremely skeptical. According to the scientific research, unless a peanut protein molecule is inhaled directly, ANAPHYLACTIC SHOCK IS IMPOSSIBLE. Peanut allergy requires direct contact or ingestion to light the fuse of a deadly reaction. My personal experience backs up the science

What is going on here? The science directly contradicts the anecdotal accounts! Let's take a look at anaphylactic shock.

Anaphylaxis doesn't just occur with a single symptom, multiple bodily systems are affected. Wikipedia mentions similarities between anaphylaxis and panic attacks:

Differential diagnosis
It can sometimes be difficult to distinguish anaphylaxis from asthma, syncopy, and panic attacks.[2] Asthma however typically does not entail itching or gastrointestinal symptoms, syncope presents with pallor rather than a rash, and a panic attack may have flushing but does not have hives.[2]”

This is fascinating.

Scientific Method Step Number One: Question:

If medical professionals find it challenging to differentiate between panic attacks and anaphylaxis, how are peanut allergic people with no medical training supposed to know the difference?

I was going to find that answer through this experiment if it was the last thing I ever did! I have a deep faith in science, an unquestioning belief that the peer reviewed research on this subject was right on. I knew from the very core of my being, that science was correct.

And science tells us that eating and crunching peanuts next to a peanut allergic person will not cause an anaphylactic reaction.

My hypothesis: people with peanut allergies who believe that they are experiencing anaphylactic shock with only a couple symptoms including 'throat feelings of closing up' are actually experiencing panic attacks.

My hypothesis (II): people who say that they will go into anaphylactic shock just by being in the same room as someone eating peanuts are most likely reacting out of fear due to panic attacks, not actual anaphylaxis.  

My hypothesis (III) Science is true. I am right.

I would like to mention that on the Wikipedia article about anaphylactic shock, there are only three things specified in the “management” section: Epinephrine, Adjuncts (corticosteriods and antihistamines), and Preparedness.

At no point in Wikipedia does it have any mention of “allergen free zones” in the management part of the anaphylactic shock article. This is important. Why would mainstream science not recommend the drastic peanut free zones that some allergy bloggers insist on? Why would Wikipedia overlook episodes of anaphylaxis if this fatal food allergy was actually airborne?

Answer and Prediction: Wikipedia does not mention them because peanut allergy is not airborne! Unless you are in a tiny pressurized cabin in an airplane and someone opens a dusty bag of peanuts, being in the same small room with someone eating peanuts will not cause anaphylaxis. It may make a peanut allergy person itch like Hell if hugs are given.  Peanut allergic fear mongers are overreacting to peanuts in the environment are actually having panic attacks.

Test and Observations: Situation 1:

I was at this art gathering a few weeks back and people were eating and crunching peanuts in the same room as me. I shook someone's hand, they'd been eating peanuts, I washed my hands, and then I wore gloves, I was safe.  Didn't eat any of the food and avoided the 3 snack tables. The hungry people ate their peanuts and I made some art.  I am not a very good artist, so the art was probably terrible.  But I had no reaction and I was fine.

I had to keep reminding myself, “I am safe, science is correct” over and over. Because being around peanuts when you are as deadly allergic as I am is downright terrifying.

My body is always aware of peanuts in the environment before my conscious mind is. My body knows. If someone has eaten peanuts in the room within a week, I know. My body feels a certain way, and I become alarmed. When traces of the smell or protein are picked up by even one of my 6 trillion cells my body goes into fight or flight and tells me, “DEADLY ALLERGY!! GET OUT OF HERE NOW!”

I have found that I can consciously override my fight or flight mechanism using mindfulness, logic, and reason.

I am a human being, not a primitive reptile fighting or fleeing from danger!

I don't want to live life with my reptile brain and allow my amygdala (fear center) running the show!

I choose to embrace my humanity and live consciously, which means that I acknowledge, but do not succumb to The Fear.

Test Situation 2: Lunch of Terror.

The set up: I was hungry and decided to go out to The Than Brothers restaurant for a big bowl of pho, a type of Vietnamese noodle soup. Normally Vietnamese restaurants use tons of peanuts. The Than Brothers is one of the few that do not have any menu items containing peanuts. I'd eaten here 3 times before with no allergic reactions.

But there is always the possibility that a cook could have been eating peanuts as a snack and then chopped vegetables. I have noticed that Vietnamese people like to snack on peanuts a lot. People in general like to snack on peanuts, but I had a close call recently at a nail salon. While my pedicure was drying the Vietnamese lady left the room and when she returned she was crunching something. She went to put lotion on my leg, and as soon as she touched me, I literally jumped out of my chair (didn't ruin my pedicure) and said, “Nooooooo!!!!!” She had been eating peanuts. She had peanut crumbs on her hands. Rinsed the itchy places on my leg where she had touched, took a benadryl and I was fine. I did not experience anaphylaxis and I actually had direct skin contact with the protein. I am a very lucky human being. But seriously, peanuts are a popular snack food with a lot of people.

Observations and Data: I walked in to the restaurant, sat down, and ordered my food. I told the waiter about my peanut allergy. He said the kitchen has no peanuts. I told him that it was a deadly allergy. He did not seem too concerned. Usually at this point, I ask to talk to the cook, manager, and explain the cross contamination danger. Today I didn't. That part was stupid of me. I should have done this. If I had done this, my experiment would have been less effective.

I purposely did not take all the normal precautions in order to mindfully collect data and observe the thoughts of my mind and sensations of my body in a potentially deadly situation. I have a meditation practice. I know what to do when anaphylaxis occurs. Do not try this at home. I wanted to see how alike panic and anaphylactic shock actually were.

I am an idiot.  In this experiment I went against what doctors advise their patients to do if they suspect a reaction.  If a person thinks they are having a severe allergic reaction they are supposed to use the epipen right away. 

The medical guidelines for anaphylaxis are immediate administration of the epipen if a person experiences hives and feelings of their throat closing up.  If my doctor reads this I will get a real talking to.  In this experiment I would cautiously suspend my freak out and subsequent epipen administration until my body displayed undeniable objective proof of an anaphylactic allergic reaction.  

Sensations I experienced would be just that, sensations.  I would let them happen and write down my experiences without judgement.   I would not label the sensations as 'anaphylaxis' until I had objective proof.  I would consider a physical blockage in my throat/mouth/palate, vomiting, cramps/diarreah, hives all over the body, and asthma/stridor (wheezing) undeniable proof and use the epipen.  My body would need to convince my mind with objective physical symptoms, not my mind getting all freaked out, catastrophizing and using the epipen.

The vegetable pho arrived and I started eating. I was really present when I first started eating. The food tasted great I noticed all the complex flavors in the broth. Reality was very real. I looked at the sunny day outside, I looked at the fishtank. Not a thought in my head. Pure presence. The danger created a heightened sense of the present moment.

Worry and panic started to attack when I noticed my throat felt funny and scratchy. Panic in my body started to rise. Then the panic subsided. I developed a hive on my lower lip. I looked at my lip in the mirror. I got a little concerned. Probably just from the salt and spice. My concern subsided.

I had a mucous cough. I felt slight alarm. The alarm subsides. I felt itchy on my face and scalp. I got worried. I remembered that I am always itchy. Worry subsided. My throat did feel funny! Was it closing up? My last episode of real anaphylaxis where my throat did close up had a very specific feeling like I had something lodged in it. I drank some cool water. Water went down fine. No blockages there! This was all in my mind!

At any of these points, I could have overreacted, assumed anaphylactic shock was going on, used my epipen and gone to the ER. The ER would have observed me for 6-12 hours and validated my panic as anaphylactic shock.

At any point had the hive multiplied into more hives, if my asthma started worsening, if my stomach started cramping, if there was a physically present blockage in my throat when swallowing water, I would have shot myself up with the epipen and called 911. I stayed present to the sensations of my body and I refused to let my fear assume control.

Conclusion:

Anaphylactic shock is a totally stupid overreaction that my body does.

My physical body is out of my control.

What I do have control over, is my mind.

I have a conscious choice whether or not I am going to overreact on the minor sensations that feel very similar to anaphylaxis.

People with severe peanut allergies like me who insist that they will go into anaphylactic shock from someone eating and crunching peanuts next to them seem to me to be irrationally overreacting. In my opinion, this is not true anaphylaxis, it is a psychological problem, a panic attack. As a peanut allergic person, I need to trust the good scientific research that tells us me that I am going to be fine. I  need to feel the uncomfortable sensations when I am in close proximity to peanuts and consciously choose to be present, mindful, and not feed into my fight or flight response.

It's probably a good idea to get away from the peanuts.  It's a horrible thing to be around, and if people are eating peanuts, they are probably touching things, and I don't want to touch those things.   Imagine the worst thing you've ever smelled.  Then imagine that smell smelling 'itchy,' 'hot,' and 'nutty-pungent.'  To me, peanuts smell worse than death.  It's maccabre.  

So please understand if I ask you politely to refrain from crunching on peanuts when I am around.  I can't function as a human very well around lethal danger.   I'm not trying to control people, I'm just asking you to be a little considerate.  It's impossible to be a happy healthy person when I am smelling that awful smell.

Just because my body overreacts to peanuts in close proximity doesn't mean my mind has to.

Living with peanut allergy, I've become very familiar with the exact signs of anaphylactic shock, and I refuse to let fear hijack my brain into believing I am in danger when I am not.  And if anyone believes that they are having an anaphylactic reaction, use the epipen.  It won't cause any harm if you are not having an acutal reaction.  

Ultimately, I can't control other people. And normal people get hungry and eat peanuts. I can only control myself.


Disclaimer:

I am a writer and science enthusiast for God's sakes. This content of this website is my personal opinion and experiences. Do not try this at home. This is not to be taken as advice.   Discuss all peanut allergy concerns with a board certified allergist.  This is not to be taken as medical advice.  Use the comment section of this blog if you disagree with me.  Have I missed peer reviewed scientific research on peanut allergy?   I love reading scientific papers!  I would like to know, so email, comment, tell me.  I love feedback.

Don't send emails and claim damages.  I will have you reading this notice in any court proceding and we'll start with you speaking in a very loud voice: 

 "I am attempting to victimize the PeanutSurvival  and/or demosure.blogspot.com website and its sponsor because I am a human who can't make their way through life other than larcenous litigation."

Peanut Survival does not make any representations, warranties or guarantees, express or implied, regarding the accuracy or completeness of the information displayed on this web site. The information is supplied by Peanut Survival with the express condition, to which everyone using it is subject, that no obligation, responsibility or liability shall be incurred by Peanut Survival and/or Peanut Survival.com and/or its principals for any loss or damage, whether incidental, special, indirect or consequential, in connection with, caused by, or arising from, any use of, or reliance upon, the information contained on this blog.

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All articles contained herein are copyrighted and may not be reproduced in any way without permission.

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The principals of Peanut Survival specifically claim all rights to the phrase "Peanut Survival", "PeanutSurvival" and "Peanutsurvival.com". No use of these terms may be made without express prior consent, except as provided for by academics and authors under fair use provisions of current U.S. Copyright law. First use of these terms occurred in 2013.

All people should know that the internet is a wild West kind of place and that when you visit an internet site, you take your chances. 

I am not offering you medical advice. Sure peanut allergic people face the threat of imminent death everyday.  This site writes about it. If you wanna read about it, that's dandy.  If you don't, well that's your business.  If you want to play in the middle of the freeway, that's your business, too.

This site is about what I am doing about my peanut allergy and I share my views and opinions along the way.  You're welcome to enjoy the site, but reading it means you agree not to sue me.  If you have a different opinion, comment on this blog, email me, write your own blog, it's cool, we're different people, and this is a free country.

You know what is sick?  There is a whole world of lawyers out there want will support you in whatever you do - no matter how stupid.  Take this disclaimer.  It comes right out and says
 'DON'T TAKE ANY IDEAS OFFERED ON THIS SITE WITHOUT TALKING TO A MEDICAL PROFESSIONAL FIRST.  PEANUT ALLERGY IS A RISKY, DEADLY CONDITION.  PEOPLE CAN - AND DO – DIE EVERY DAY.  

TALK TO A BOARD CERTIFIED ALLERGIST ABOUT ANY IDEAS AND OPINIONS THAT ARE ON THIS WEBSITE BEFORE YOU DO ANYTHING RISKY, like eating.

And,very important: I love you.  I love you so very, very much.  I think you are a transcendental being of light.  I want you to live.  Because you are important and you matter.  You are more precious than a wish fulfilling jewel.  I know, deep down inside, that you want to live just as much as I do.  Thank you for reading my blog.  Please subscribe.  My writing will only get better, and I promise I am trying to be less of a grouch.

And last but not least,

Be careful out there.

Tuesday, September 10, 2013

Food Allergies Are Killing People and Nobody Knows Why -Not Enough Being Done to Stop the Rising Epidemic

Hello everybody!  My name is Denise Ure.  I live with severe peanut allergy.  My peanut allergy is extreme.  The helpful scientists at the Benaroya Research Laboratory say that my allergy is a 5.  This scale goes to 6.  I am "highly, highly allergic," in the words of Benaroya Institute Study Coordinator, Jennifer Heaton.



I absolutely hate it that people, mostly cute little kids are dying from this allergy.  Every day staying alive is a struggle for me.  I have to carry an Epipen with me everywhere, and I am never 90 seconds away from it at any time.  Because if I ingest peanuts, I have 90 seconds to live.  90 seconds.  I am just one person.  Currently in this country, there are millions upon millions of people living with this potentially fatal disease.   And as a society, we need to start taking action to curb this rising epidemic before it gets any worse.  More and more fatal food allergies are being diagnosed every day.

Every day I continue remaining alive, my inner resolve strengthens:

I believe that my life has been spared during the course of over 30 life threatening anaphylactic allergic reactions in order to help science eradicate all deadly food allergies off the face of the Earth forever.

I also believe that my life has been saved numerous times to protect other people living with severe peanut allergies.

There is a lot of hysterical, inaccurate information out there.  My goal in this new blog is to educate the public with scientifically accurate information about fatal peanut allergies.  I know a lot about science, and I can [sometimes] write entertaining posts and articles.

Let me give you a little of my background.  I majored in Biology and Chemistry at the University of New Orleans.  I have worked in many DNA and ELISA testing laboratories.  I know about science.  I can read and understand articles on PubMed.  I know the scientific method like the back of my hand.

Another strong core value of mine is public health.  My brother works for King County Public Health.  So did my grandfather.  I grew up reading my grandfather's old 1960's CDC manuals and government issued books cataloging diseases.  I am fascinated with Epidemiology (Epidemiology is the study (or the science of the study) of the patterns, causes, and effects of health and disease conditions in defined populations.)

I find disease outbreaks fascinating. I love how people can come together to fight them even more.

I think the greatest accomplishment in all of human history is the eradication of the smallpox virus.  And we did it with vaccines.  I would like to mention that I am strongly pro-vaccine.

Smallpox has killed more people in human history than every single act of war and violence combined.  Because of the efforts of dedicated scientists and doctors, smallpox will never kill another person again.

My dream is that in my lifetime, scientists, doctors, and the public will join forces once again in a similar effort to eradicate anaphylactic food allergies forever.  Before I breathe my last breath, I want to know that fatal food allergies are as extinct as smallpox.

As a society, we are not doing enough to stop this drastically rising epidemic.  Science does not even know what causes food allergies.  Smallpox is caused by the variola virus.  What are the triggering events for anaphylactic food allergies? Nobody knows!  Science has a couple of ideas, like the 'hygeine hypothesis,' but the exact combination of triggering events remains vague at best.

I am 35 years old.  I have had anaphylactic peanut allergies since I was 4.  I have no idea what a peanut even tastes like.  My generation was on the cusp of an epidemic of biblical porportions.  The number of people with fatal food allergies has been increasing exponentially.  Growing up, I was one of two people in my entire school district with fatal peanut allergies.  Today in every classroom in the United States of America, there are two cute little kids in every classroom who will die if they eat the wrong food.

And that number is rising in every classroom on the planet.

This is not okay!  We need to call our representatives and senators in Washington DC and let them know that our government is failing us.

Every day children in this country are dying because they got hungry and they ate the wrong food.  This is not okay.

Right now the CDC isn't even tracking deaths correctly that were caused by food allergies.  Deaths due to fatal food allergies are classified in many different ways:  bronchospasm, hypotension, heart failure, laryngospasm, fatal asthma attacks, heart attacks, and sometimes anaphylaxis is listed.  Sometimes. The cause of death is a term which refers to an official determination of conditions resulting in a human's death.  Right now we are classifying "fatal food allergies" according to the final bodily system that failed resulting in brain death.  We do not even have a current, accurate count of how many people are dying each year.

On the CDC's main "Diseases and Conditions" website, anaphylactic food allergies are not even listed.  That's a huge blind spot considering there are two children with deadly food allergies in EVERY US classroom.

How is it that the CDC keeps ignoring this looming threat to public health?  The most recent information I could find about peanut allergies on the CDC's website was from 2008.  This is not okay.  Public health is failing us.  Various internet sources say the yearly death toll from food allergies is about 200-300.  I suspect that number could be as high as 3,000 a year because of the misleading cause of death classification issue.  The CDC needs to start tracking the death toll from food allergies in a manner consistent with an emerging epidemic.  Currently, they are not.  We can fight this war a whole lot better if we know exactly how many people are dying.

Death from anaphylactic food allergies is tragic and senseless.  Each and every person who has died of food allergies matters and is important.  I have come so close to death so many times.  It could have been me.  Reading about the lives of the children, teenagers, and adults who have had their lives tragically cut short I wonder why they are dead and I am alive.  I am a moody grouch compared to these people, and adorable children who were full of love and beacons of light.  Surely they deserved to live more than moody old me. But here I am.  A survivor.  A very lucky human being.

I am starting this blog because I am alive and a little girl in California is not.  She was 13 years old when she died last month in her father's arms despite receiving three epinephrine injections.  She ate a Rice Krispies treat that contained peanut butter.  The CDC and the government are not doing enough to prevent deaths like hers from happening.  And this has got to stop because this epidemic is growing.  How many more people have to die before we start paying attention?  One more death from food allergies is one death too many.