Wednesday, August 31, 2016

Dying for a Cure

My deadly peanut allergy is an invisible demon that lurks in my body.  It hides in my bone marrow and blood, waiting for any trace of peanut protein to come into contact with the six trillion cells of my physical body.  If I accidentally eat peanut protein, a catastrophic allergic reaction called 'anaphylactic shock' could kill me.

Living with a deadly allergy is a life of anxiety, fear, avoidance, and constant, constant vigilance.  I read ingredient labels, I constantly scan the environment, I don't eat out at restaurants with peanuts on the menu or in the kitchen.  This allergy affects every aspect of my life, all day, every day.  I would do anything to help cure, or treat this awful condition.  And the Monday before last, I did.

After an entire life of strict avoidance, I intentionally ate applesauce laced with peanut protein for the first time ever.  I did it for science.  I did it to help find a treatment, and maybe eventually a possible cure.

I consumed 44 milligrams of peanut protein.  This is the equivalent of a little less than an eighth of a peanut.  I became violently ill and went into anaphylactic shock.  Had I not been in the hospital, I probably would have died.  I vomited.  I had diarrhea.  My skin turned beat red and my entire body burned from the inside.  I basically had Ebola for three hours.



The good doctors and nurses emptied their entire arsenal of emergency medication into my muscles and veins and managed to reverse the severe reaction.

I had come back from the brink of death again.

I recently enrolled in the Palisade Trial to investigate an experimental treatment for peanut allergies. I have been afflicted with peanut allergies since I was 15 months old.  Here's their website:


My peanut allergy is ridiculous, brutal, stigmatizing, and horrific.  I blog about it.  Obviously.  It is terrifying to navigate this nutty world, avoiding peanuts, trying not to die.  I wanted to do more than write, vent, and complain.  I enlisted in the battle.  This is my fight.  I faced my greatest fear in order to help science figure out how to treat and cure this disease. 

I printed out a piece of paper.  It had photos of nine people.  These people were young, and all beautiful.  All of them are dead.  They all died from accidentally eating peanuts.  Fuck this awful disease.  Nobody should have to die because they got hungry and ate the wrong food.  Nobody should have to live like this, either.

I wear an invisible badge of honor:  I survived last Monday.  I faced death, and I lived to see another day.  

I was standing in line at the store yesterday.  The line moved so slowly.  The people in the line were stressed.  It was very hot.  I looked at the people.  I saw the cashiers ringing up items.  I noticed the managers standing around talking.  After overcoming death, the business of life goes on.  Nobody saw my invisible badge, but it was there. I savored and appreciated the moment and felt compassion for everybody in that whole store.  I bought a casual pair of stylish dark gray pants.  

I did all of my laundry at the laundromat Wednesday.  I went to the store and bought detergent beforehand.  The clerk was tall and had interesting glasses.  I fed my kitty cat today, then I cleaned his box.  The boring, tedious, mundane chores are sweeter.  Life's more precious to my heart this week than it was last.  This is a real gift.  Slowly this state of mind will dissolve and I'll take everything for granted again, but I'm enjoying my moments.  After having a near deadly allergic reaction, I deeply realize that every moment is a second chance.

This week, I've been less frustrated and angry.  I've had a more positive attitude.  It's been good.  My body is healing from the massive inflammation, and the steroids have made sleeping a struggle, but healing is happening.  

The excruciating pain of an anaphylactic allergic reaction is almost indescribable.  My palms, the entire surface of my body itched.  My skin swelled up with welts all over my body.  I turned red.  I felt my body burning.  I felt my throat swell up.  That was exceptionally terrifying.  I felt two injections of epinephrine, one in each arm.  They didn't feel like anything, tiny little drops on an agonizing sea of fiery pain.  I tasted the crystalline salty ice of the saline solution the nurse injected into my veins on the roof of my mouth.  The medicine affected my perception.  I lost track of what was happening, lost track of conversations, I was so sick, and confused.  I remember drinking ice water.  It was nice and soothing to drink while my body felt that it was on fire.  I remember the nurses going with me when I had to go to the bathroom.  I was very happy about that.  I remember getting up out of the hospital bed and wanting to run away from the pain.  But I was trapped in this swollen, red, reactive body.   And then I had a panic attack.  Or maybe it was the anaphylaxis affecting my consciousness with a sense of impending doom.  I think that I suffered the most during this panic attack.  Fear.  Terror.  Blind panic.  Looking down at my hands, I saw that my fingers were swollen like sausages and I became overwhelmed with dread and anxiety greater than that I have ever known.  My ring would not come off my finger.  I was trapped in metal, being measured by instruments, and the medical team kept pumping more and more medicine in my IV.  I was initially very disappointed in myself, for letting fear take over. The compassionate nurse iced my swollen fingers, and tried to keep me calm.  I was very grateful that she was there helping me.  On reflection, maybe the panic attack was my brain's way of squirting out more epinephrine to help reverse the reaction.  My face was red hot.  My neck and back boiled.  Red welts covered my legs.  My asthma flared up and it was a struggle to breathe.  I took a couple of nebulizer treatments.  

And then slowly, the the medication subdued the reaction.  The allergic reaction subsided.  The welts started disappearing.  The redness drained from my skin.  The fire burned itself out.  I started to feel a little better.  Life goes on.

I won that battle.  I emerged victorious.  I did the thing that I fear the most.

Tomorrow, I have another food challenge.  I eat more peanut protein.  It's cool.  I got this.  I have emerged from this experience with a deep intuitive knowledge:  I already went through the worst case scenario: eating peanut protein and violently going into anaphylactic shock.  I tackled it, and I nailed it.  Even if the worst case scenario happens again, I dealt with it once.  My medical team and I can do that again if we had to.

We won this battle.  We are poised and ready to win the war.



5 comments:

  1. thank you so much for writing these blogs! as someone with a tree nut allergy, I can really relate. I've never gone into full anaphylactic shock before, but the idea still terrifies me. I had a minor reaction when I was about 10 from some cross contamination at a restaurant, and after that I've been borderline neurotic watching what I eat. I'm incredibly picky about where I eat out at (if at all). your entry about anxiety attack symptoms and their similarities to anaphylaxis really struck home with me because I suffer from anxiety over eating almost daily. sometimes I get anxious even eating things I know are safe. it's really no fun at all. even though I know the symptoms are all just anxiety, there's always that thought of "what if it's an actual reaction?" that goes through my head. even if I'm the slightest bit unsure or uncomfortable with eating something, if I eat it anyways I almost always get anxiety. it was really comforting to read your experiences with it and to know I'm not alone in this.

    and please keep updating with the results of this experiment! you are a very brave soul for even considering intentionally eating peanuts. I can't even imagine how scary that must have been. it's incredibly brave and I hope you help find a cure for this terrible disease!

    also, just a quick question- does your boyfriend avoid eating peanuts? or does he only not eat them when he's going to be around you? I'm just curious because I've read some studies about how the proteins from peanuts and tree nuts can linger in mouths for several hours and cause reactions through kissing, which is kind of terrifying lol. any thoughts or experiences with that?

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    1. Hi Hugh!
      Thanks for commenting! The anxiety that goes along with a food allergy is terrible, and I'm sorry that you suffer from it too. I see a therapist weekly and this has really helped me manage my anxiety about my allergy. If anxiety is preventing you from enjoying foods you know are safe, I implore you to see a professional to help manage it. My therapist uses EMDR and mindfulness, this was a game changer and my anxiety has been alleviated to manageable levels. My deadly food allergy already has a huge impact on my life due to the fact of my biology, but with meditation, therapy, mindfulness, and wellness practices like yoga, I'm working on not letting the fear affect my mind.

      I'm working on an update to this post right now, -stay tuned.

      Thanks for the question! I don't have a boyfriend. Haha! But in the past when I have dated people, the person I am dating avoids eating peanuts, and peanut products at least 6 hours before seeing me. I have had small reactions (localized itching, mostly) from kissing people who have had peanut protein lingering in their mouths. Honesty, communication, being careful, and helping people remember by verbal reminders (people forget) are key to maintaining safety when being affectionate with romantic partners.

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