Monthly Archives: August 2016

My Anaphylactic Allergy – And the 500% Price Hike for an Epi Pen

EpiPen

My allergies started out gradually and crept up on me.

First, there was a metal taste in my mouth like I was chewing aluminum foil whenever I drank red wine, ate a handful of assorted nuts, a few cherries, or a side of mixed vegetables.

Then, in addition to “metal mouth,” it seemed like certain fruits I ingested, like apples, peaches, plums, and even raisins, would tingle my tongue or itch my throat. I had no idea what was going on.

Plus at night, I would writhe around for hours with abdominal pain, severe nausea and such intense stomach palpitations that I thought there was a jackhammer digging a crevice inside of me.

I went through untold numbers of laboratory, radiological, ultrasound, and endoscopic testing.  I suffered through a colonoscopy, a cystoscopy, and a CT scan.

After months of tests, my gastroenterologist sat down with me to tactfully explain my problem: It was psychological. He suggested I try a psychologist.

Really? All those raucous parties in my belly were caused by crazy?

Turns out he was almost deadly wrong.

I eventually discovered the reason for my “problem” the hard way—by snacking on a bunch of raw baby carrots, which caused an allergic reaction that almost killed me.

I had somehow developed a “priority allergy” and was little by little becoming deathly allergic to carrots. I had also developed a severe case of fruit-pollen syndrome.

I was later told by an allergist that in addition to having the fruit-pollen syndrome, my priority allergy to carrots, triggered a systemic reaction in my body that induced a near fatal outcome when my severe tongue swelling frightfully cut off my ability to breathe.

The way it was explained to me, is that my allergy to certain tree, grass, and weed pollens is why even a sliver of a carrot has become my mortal enemy.

The pollen molecules of weeds and certain trees like birch, alder, poplar, are so similar in structure to the proteins in certain raw vegetables and fruits that one of the body’s natural defenses against allergens—an antibody called immunoglobulin E—can’t tell the difference.

So when the antibody binds to a fruit or vegetable protein, anyone allergic to the pollens I described above, may develop an immune response that can cause metal mouth, itching, and tongue tingling.

The reaction can actually bypass the mouth and enter the gastrointestinal tract, causing severe abdominal pain, stomach palpitations, and nausea.

And my gastroenterologist didn’t know this because?

Now that I am allergic to birch pollen, I have also developed an oral allergy to apples, pears, peaches, plums, apricots, cherries, hazelnuts, cashews, almonds, and kiwis. And it seems that every day I discover another annoying food I’m allergic to.

I recently ate a slice of rye bread and spent the next few hours itching and coughing, while clutching my at-the-ready EpiPen.  And then there was the lip swelling and tingling I experienced after drinking a Corona beer. Go figure.

I am also severely allergic to mold, which triggers my asthma, as well as dust mites, and pet dander. All three cause me to cough, wheeze, become dizzy and lightheaded, and run for my Epi.

Wool, many laundry detergents, sunscreens, eye shadow, nail polish, face makeup, mascara, shampoo, conditioners, perfume, and most fabric softeners give me severe hives. But the good news is—they won’t kill me.

But the worst allergy for me is called weed mugwort and has caused mild to near fatal allergic reactions in my system to carrots, bell pepper, caraway (thus the rye bread), coriander, aniseed, fennel, cinnamon, paprika, chamomile, green tea, and cumin.

There are a few foods I can still enjoy without my stomach cramping and my mouth tasting like metal. These foods include broccoli, cauliflower, potatoes, lettuce, cheese, tomatoes, peanuts, green onions, cabbage, watermelon, bananas, melons, citrus, tropical, and berry fruits.

So far, that is.

I have been warned that based on my allergic reactions to so many foods, and my anaphylaxis allergy to carrots, that there is an increased chance of my allergies progressing to a more severe reaction.

The bottom line for me is that I have a 50/50 chance that if I accidentally eat a carrot, I will go into anaphylactic shock and I could die.

So I carry two EpiPens and a bottle of liquid Benadryl with me at all times.

It was strongly suggested to me by my allergist that I purchase several EpiPens for home, in the car, in my purse, and in the office. Because, believe me, I can now attest to the fact that once the tongue starts to swell, your breathing passage gets blocked very quickly.

Most EpiPens come in a set of two. And EpiPens should be replaced every 12-18 months. My expiration date states 18 months, but last time I replaced my Epis at 12 months. Why would anyone take a chance and wait 18 months?

The last thing you want to do is stab yourself in the thigh while your breathing has all but stopped, only to find out that your EpiPen has expired and is too old to work!  That means death folks. I’m not joking.

I can’t even fathom how I would handle having a child with a deathly allergy. It must haunt parents 24/7. The only thing that can save your child from an anaphylactic allergy attack is to stick them in the leg with an EpiPen. But what if you’re not around? What if they’re at camp, in school, at a friend’s house?

As an adult, I can handle the realization and stress that I can die anytime, anywhere, anyplace. But there is no way in hell I could accept that kind of fatal possibility with my child.

I don’t know how a parent lives with the worrying all day every day. I do know they must buy a shit load of EpiPens to ward off any and all possibilities.

If I had a child who had an anaphylactic allergy, I would buy Epi sets for school, all the cars, friend’s and relative’s houses, camp and wherever and everywhere else.  And this is where a psychologist would probably come in handy.

Now comes the ridiculously unfair and outrageous part of the whole situation.

In 2013 I paid $264.50 for a two-pen set. I thought the price was absurdly expensive, particularly since I wanted to purchase at least four sets.

Now? The current price is about $640 a set.

The company Mylan, has a monopoly on the product for at least one year. That is when a generic competitor will hopefully enter the market.

Until then, Mylan is just straight up greedy, and is just another example of what happens when a monopoly situation ends up in a company’s lap.

It’s morally wrong, and shame on Mylan for putting innocent children at risk of death. Not to mention me.

Now, if I want to purchase a set for my car, my husband’s car, my purse, and my office, I need to shell out approximately $2,560. Will I get reimbursed? No, because I have a high deductible health plan.

And how about the families who can’t afford even one set? Or worse, who have no insurance?

If I had a child with anaphylactic allergies, I would buy as many as I needed no matter what the cost. I couldn’t and wouldn’t take any chances whatsoever with the life of my child. Who would?

But for my personal situation?

I carefully safeguard my two measly EpiPens and my bottle of liquid Benadryl, and take them everywhere I go. And I’m already at 16 months with the same pens.  Stupid decision, I admit.

A letter to Congress called “Stop the EpiPen Gouging” asks that there be an investigation and regulation into the 420% increase (adjusted for inflation!) in the price of EpiPens since 2004. And so far, 116,620 letters have gone out. Take that Mylan.

Please click on this link and fill out the form right now?

Your letter might not save all of the people who die from anaphylaxis this year, but it might save the life of one person.

anaphylaxis-symptoms-food-allergy

Yep. I made it to my 45th Staples High School Reunion!

Reunion 45th

To go or not to go? That was my Staples High School Reunion question.

But after all the handwringing, I came, I saw, I conquered.

After I had written my blog post about whether to go or not to go, I received tons of e-mails and postings from hundreds of people—many of them were former classmates but many were not. There was an incredible outpouring of support, but more importantly, so many of those who wrote to me opened up about their own heartbreaking high school experiences.

So I want to thank all of you for your honesty and compassion. Because in the end, you were the reason I decided to suck it up and go.

And sure, it was the same old reunion-type dialogue. We talked ad nauseam about the good and bad old days. We reminisced about this store and that restaurant. We told horror stories about our drunken forays from Portchester to Westport. Sit-ins, Cardinal Puff, detention, lots of pink and green, Devil’s Den, Steak and Brew, the girl from uncurl, blah blah blah.

But here’s the thing.

We also asked each other the deeper more meaningful questions. We talked about our parents, our siblings, our children, our grandchildren and our feelings. Nobody really cared about how we made our livings. It was more about how we made our lives.

And it was cathartic. Because for a brief few hours, I was able to go back to that time and place and rediscover that naïve teenager, with unlimited promise, within myself. I would like to think we all went back to that young girl or boy who possessed enormous opportunities; full of hopefulness, and youthful ambition and dreams that were actually possible.

It was restorative to hear stories about that young Teri I once was, and I was grateful to meet her again—this time through the eyes of others.

As Paul Simon so eloquently put it: “What a time it was, it was a time of innocence, a time of confidences.” But my time of innocence has long past, so it felt good to celebrate who I was back then, and now as I enter my twilight years, to give me pause to reflect on who I am now, and how my life has impacted the lives of others.

I drove by what was once Mario’s, Oscar’s, the Red Barn, and Sally’s Place. I made my way to the spots where the Big Top, the Ice Cream Parlor, and the Remarkable Book Store once stood. And despite the sweltering heat, I walked the length of the Staples football field and then took a peaceful stroll through the Nature Center. I drove by my old house—three times. And then I pulled my car over and wept. A mixture of tears of joy for all that I have and tears of sorrow for all that I have lost.

As I shared stories with my fellow Stapleites, I realized that we walk a similar walk. And talk the same talk. And in our conversations, we all agreed on this: that our lives were rich, precious, painful, complicated, beautiful, miraculous, cruel, messy and loving.

Life caught up with the most talented, the most beautiful, the best dressed, the most popular, and the most famous. And finally, after 45 years no one gave a damn who was the loser, how many times someone was married, who was the sports star, who was the captain, who was the smartest, or who was the reject.

Because at our age, we finally understand that no one has escaped the pain and disillusionment of loss, outer beauty, disappointment, illness, drama, death, poor decisions, bad relationships—you name it, we’ve been through it.

We spoke of our children, and grandchildren, of siblings, wives, and husbands who were taken away from us way too soon, parents who committed suicide, and a son in desperate search of his birth mother. Doctors, lawyers and Indian Chiefs. A pastiche of 1971 spirits cloaked in 2016 bodies.

Yes, I made it to my reunion—the one and only Staples class of 1971. I was surrounded by compassion, confidence, vulnerability, and genuine interest in what I have been doing with myself for the past 45 years. With no awkwardness and no judging.

Okay, there was one moment of awkwardness when a former classmate excitedly pointed to me and exclaimed “OH MY GOD! YOU’RE ALIVE!!!”

“Uh, yeah, last I checked,” I responded warily. She proceeded to explain (as best she could) that she had been telling people I was dead because my photo was on the deceased table.

The deceased table?????? I sprinted over to the table and to my relief there was no Teri photo. Whew.

But on the serious side, we lost so many classmates. A heartbreaking reminder that life is short, and that if you believe in God, He most certainly works in mysterious ways.

And how about that Reunion Band? Wow. A bunch of 60 somethings dancing and grooving to outstanding music thanks to the talented Charlie Karp, Brian Keane, Mike Mugrage, Bill Sims, Bubba Barton, Bonnie Housner Erickson, Rob McClenathan, Julie Aldworth McClenathan, and Jeffrey Dowd. And a shout out to the incredible singers Kim Sullivan and Linda Satin Pancoast. And of course, let’s not forget David Jones on the spoons.

And who knew that Charlie had recorded with Buddy Miles, opened for Jimi Hendrix, and toured with Aerosmith? Or that Brian was the winner of four Emmy Awards?

And I don’t know about anyone else, but they really got me with their last song of the evening: Forever Young. Oh, if it were only possible.

The photo booth, the hand painted rocks from Compo Beach, the old time candy, new friends, and old friends. All in all, it was an incredible couple of days thanks to the tireless and I’m sure often thankless effort by Joanne Romano-Csonka and Bonnie Housner Erickson. Without the two of them, I don’t know if we would even have a reunion. Time and time again, every five years, they put their all into making a beautiful event for the rest of us.

At the end of an incredible Saturday evening, we all said our reluctant goodbyes, full of bear hugs, kisses, and good wishes, promising to keep in touch. We probably won’t.

And the woman who thought I was deceased? Well, she wished me well and reiterated that she was thrilled that I was still alive. Me too, girlfriend!

So for anyone stressing out over an upcoming reunion—and who, like me, keep going back and forth anxiously asking themselves the “to go or not to go” question. I say go. Take a chance. Reach back in time. Feel like a kid again.

And God willing, I’ll see my 1971 buds in 2021!

Long ago it must be
I have a photograph
Preserve your memories
They’re all that’s left you
~ Paul Simon

Reunion 45th Deceased Table

My Staples High School Reunion—to Go or Not to Go

Nervous woman

As of right now, I plan on attending my 45th reunion from Staples High School in Westport Connecticut next weekend.

But to be honest, over the past few weeks I have gone back and forth and forth and back about whether to go or not to go.

At 63, I see myself as independent, confident and strong willed. But I wasn’t always that way.

My looming reunion has me going back in time to my 1968 self—anxious, teased, meek and weak.

Taunts like “Theresa the Greaser,” “Olive Oyl,” and “The Mod Martian,” were some of the names I painfully recall when I look back on those not so wonderful years.

I wasn’t invited to any of the fancy schmancy parties, although I would strain to hear the popular kids excitedly talk about them before class, in the gym, and at lunch.

At dances, I was the perpetual wallflower, sitting in a corner uncomfortably observing high school life passing me by.

And the fear of having my name “Theresa” be forever associated with the word “Greaser,” was the reason I decided to drop the name altogether and use my nickname, “Teri.”

I grew to hate my own name. If anyone called me Theresa, I refused to answer to it. As a result, I haven’t referred to myself or been called Theresa for over 48 years.

Now, I don’t want you to think I had zero friends because that wasn’t the case at all. I had some really terrific friends, which is why I’m on the fence about going to the reunion. But what if they don’t show up? Who will I talk to? Who will I hang out with? To go or not to go.

And I also don’t want you to think there were hundreds of haters out to get me. No, not hundreds, but enough to make my 10th year in high school unbearably lonely and downright miserable.

To ward off the haters, I reinvented myself in the summer of 1969, in preparation for the 11th grade. To give credit where credit is due, my best friend at the time showed me the wealthy way to fit in: the latest and greatest hairstyle, expensive, somewhat revealing trendy clothes, push-up bras, and makeup. Lots and lots of makeup.

I called it my war paint. To this day I despise wearing makeup and still refer to it as war paint. I artfully paint it on whenever necessary and wipe it off as quickly as possible.

But in the summer of 1969, I wore that war paint proudly—and often. And with the makeup, along with all the other superficial fixes, I succeeded in throwing Theresa far far away.

And I won the war. Because guess what? The haters stopped hating. Which was weird, because I was the exact same person. Okay, to be sure, I had way nicer clothes, straighter hair, and at least the appearance of bigger boobs.

My early high school experience definitely shaped who I am today; steadfastly intolerant of bullying and totally and utterly unimpressed with the rich and famous.

And all of that rejection was forever ago, so in preparation for possibly attending my 45th reunion, why is it that I can’t stop feeling like that anxious, skinny, homely girl back in 1968?

Which is why last night I made a final decision not to go.

Only to wake up this morning and decide to just suck it up and go already.

I don’t know if I’ll show up or not. I guess I’ll wait until next Friday and see how I feel.

At least I don’t have to worry about getting a huge ass pimple on my face. That was so 1968.

But, to all my fellow Stapleites: if I do happen to show up for the reunion, and you happen to see me sitting in a corner—wallflower style, pretending my phone is blowing up with activity, please say hello and let’s remeet each other.

Because I’m Theresa, hear me roar.

Teri Gatti 1971