Giving Back- 4000milligrams.org

Seeing the food you're allergic to is like the way other people see a poisonous snake or a tarantula. If you have food allergies, you know what I'm talking about. It's fight or flight. That fleeting moment of sheer panic that makes your stomach drop and your heart kick into overdrive.

For as long as I can remember, Epi Pens have been my security blanket. I can't remember a time when they weren't either in my bag or glued to my hand. They made eating things, touching things, and smelling things less intimidating. It was like the earthquake kit on the shelf in the front hall closet. Even if I never used them, just knowing they were always there gave confidence to live my life without being afraid of food.

But on August 8th I wont need them anymore. And as liberating as it's going to be, I have to admit that it is, psychologically, a scary thing to do. 

And I realize that there are many who suffer from food allergies that cannot afford to have Epi-Pens. So I've decide to raise money for the two causes that have truly changed my life.

My first initiative is to raise money for Epi Pens for children who don't have health insurance or whose health insurance does not cover Epi Pens. The money will be donated directly to Dr. Nadeau's patients.

My second goal is to raise money for Xolair. Xolair has enabled me to complete the study in just 6 months with fewer reactions. 

Please visit www.4000milligrams.org to donate. 

Thank you for your help!

You'd rather have what?

"Wait why do you need your own cup?"

I realized this was the first time I was going to have to explain my allergies to a guy I didn't know. And I had absolutely no idea what to say.

"I... just can't share anything with anyone right now!"
"Why?"
"I'm...sick. I have mono."

The words came out before I even realized their implication. Saying "I have mono" is NOT something you want to tell a cute guy at a party.

"Wait... do you really?"
"Um no just kidding. I actually... I actually just have a peanut allergy so I can't really share stuff with people. I think I'd rather have mono though.."

I waited for him to react. To walk away or something. Only he didn't.

"Oh. Haha nah that's way better than mono. Trust me you don't wanna have mono."

After that night, I wondered why my allergies seemed like such a big deal, and why I hated telling people so much. I realized that it was the worst kind of attention you could possibly get. A hot spotlight of vulnerability. Acknowledging my allergies made me feel weak and awkward, both traits that normally don't apply to me.

Vulnerability is a funny thing. It consumes you. It eats away at you until your self-esteem is centered around that one quality that makes you feel like you're different. After a while there's no "putting it into perspective" because every time you have to refuse a piece of birthday cake or order out at a restaurant or carry Epi-Pens, it's this constant, gnawing reminder that you're inadequate.

Now, all this might seem incredibly dramatic. And it is. But it took me a while to realize that. Having allergies was only a bad thing because I convinced myself it was a big deal. Cute Guy certainly didn't seem to think it mattered. I think I was so wrapped up in the fact that having allergies set me apart from my peers that I forgot to look at the big picture. That in the end, it just means you can't eat some stuff. That it doesn't define you at all.

The further I am into this study, the more removed I feel from my allergies. It has less and less of a looming presence in my life. It's easier to look my allergies for what they really are when they're not a constant source of anxiety. Just like with anything, food allergies are only a big deal when you act like they are. And when you think about it, seriously, having mono would be a lot worse.

Last Xolair Shot

ouch!

My "Dose Diary" where I record any symptoms I've had 

This is my last doctors appointment until I "graduate" from the study in August. I'm getting more and more excited!

Trying Something New

My friends eat it with a spoon. And I have to say I understand why. Jif Peanut Butter is actually kind of good, especially on apples. For the past three weeks I've eaten a slice of apple with one tablespoon of peanut butter on it every night. 

But eating something I've been avoiding my whole life is going to take some getting used to.

Sometimes, when I'm making myself my dose and I get peanut butter butter on my hands, there's this brief moment of panic until I remember I'm not going to die.

4000 Milligrams!!

4th Xolair Shot

4000 Milligrams of peanut butter!

I've finally reached 4000 milligrams- the amount that I will most likely stay at for the rest of my life (and as you might have guessed from the title of this blog- the ultimate goal). 

Needless to say, it was definitely an important milestone! However, August 8th will be the actual last day of the study. On that day, I will probably eat double this amount (8000 milligrams). I'm not entirely sure what will happen that day, but I will be sure to keep you posted. 

I Just Don't Like Peanut Butter

My very first Reese's Peanut Butter Cup

The face pretty much says it all. 

"You mean you've never tried a Reese's Peanut Butter Cup?" 

It was something I'd grown up hearing. For some reason, even though most people were well aware that I was severely allergic to peanuts, this fact always came as an utter shock. My life was apparently incomplete because I'd never had the pleasure of tasting the holy grail of peanut butter and chocolate. 

So when I tried Reese's for the first time, I had high expectations to say the least. 

But it just... didn't taste that good. And the truth is, I have nothing against Reese's, I just don't like peanut butter. I don't like the taste, and because when I eat it I still have mild reactions (like coughing, itchy throat, stomach ache, etc) I definitely don't like the way it makes me feel. 

 I imagine it's like tasting coffee for the first time. Peanut butter is an acquired taste, only it doesn't seem that way because most people are introduced to it at a young age. 

So hopefully it'll grow on me. Because I'll be eating it every single day for the rest of my life. 

It Started With a Cold

I was up to 2000 milligrams, eating about 10 peanut M&M's per night, when I had my first and only severe reaction thus far during the study.

I was almost done with junior year, and I was sick. Nothing too bad, just a common cold. But unfortunately, neither my parents nor I saw the warning that clearly states to cut your dose in half if you  get sick. So I had my dose that night as usual. 

Shortly after, I got a stomach ache (I usually refer to this as "the stomach ache" because for me, the type of pain is entirely specific to a food allergy reaction), only it was worse than usual. Soon after, I started having chest pains and it became difficult to breathe. At this point my parents called the nurses. I had already "pre-dosed" with Zyrtec, but they suggested that I take Pepcid (an antacid) to help with the stomach pain. Only then I threw up. A lot. 

So the nurse we were talking to decided that the best course of action would be to use an Epi-Pen. Now, I've used my Epi-Pens probably a dozen times, but I had never had a reaction that was so severe. 

After not dosing at all for the next two days,  my dose was cut in half for two weeks until escalate to where I had previously been.  We also added two Pepcid to my pre-dose. 

I began throwing up on a regular basis, though never actually after having my dose. Oddly enough it usually happened when I was hungry, like in the morning or after school. The throwing up went on pretty much throughout May and June, and at it's worst, I was throwing up three times a day. Dr. Nadeau said she'd never seen any reaction so severe. 

So we went to see a G.I specialist, who suggested that after the reaction, throwing up became sort of an involuntary reaction. It was like my body had learned a bad habit. After all, I was essentially poisoning myself with a substance that would have previously killed me. It's possible that I've developed something called Gastroesophageal reflux disease (GERD), which is a very rare side effect from the study. However, I began taking Prevacid, and the symptoms nearly stopped. I still occasionally (and very randomly) throw up, but not nearly as often as before.

And to think, if only we'd read the directions. 

2000 Milligrams - Half Way There!

My first peanut M&Ms

I've officially had my first taste of real peanuts! The verdict? They were okay. But honestly, I don't think I was missing out on much. 

On May 15th I started eating 10 peanut M&Ms a night, and continued to eat them for two weeks. 

Peanut Powder

1250 Milligrams of  Peanut Flour

so pretty!

Until I reached 2000 milligrams, I took my dose in the form of peanut flour, as it enables the most accurate measurement. It's doesn't have a distinct taste, just a texture, and I usually put it in a smoothie. But after two weeks of strawberry, banana and chalk smoothie, I think I'm done with smoothies for a while.