When a Jelly Belly Employee Acted Quickly for My Food-Restricted Child

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Between the beginning of July 2010 and the end of September 2010, our family ate a diet that was vegetarian, dairy-free, egg-free, soy-free, wheat-free and nut-free. As part of the treatment protocol for my daughter Sammi’s eosinophilic esophagitis, the “six food elimination diet” was supposed to remove the worst potential allergens from her system, hopefully healing her esophagus and giving us the chance to add the offenders back one at a time later until the real culprit was found. The full elimination portion of the diet was just plain awful.

While the rest of us could sneak off and have luxuries such as omelets, almonds and bagels, Sammi was living this diet 100 percent of the time. We did everything we could to make it palatable. We made elaborate fruit salads and learned to cook ridiculously complicated foods. We spent a lot of time at the farmer’s market trying new produce. Our friends and family circled the wagons and did what they could. During all of this, I can only really remember snapshots — the most powerful moments preserved in a visceral feeling of either dread or deep relief.

One of the strongest memories I have of that time, though, was the deep compassion bestowed on us by an employee of the Jelly Belly Candy Company. As a special treat for our kids, their great aunt had offered to take them on a tour of the Jelly Belly factory about an hour away from home. As luck would have it, Jelly Belly’s jelly beans are free of all the top eight allergens**, which I confirmed on the phone before they left.

They had a wonderful time at Jelly Belly headquarters and came home with souvenirs and, unsurprisingly, mountains of jelly beans. It was a moment of normalcy in a totally abnormal summer. And then, I read the words on the side of one of the bags of candy they’d eaten on the tour: Produced on shared equipment with peanuts.

I can’t overstate the panic I felt. Even though Sammi would not get sick from this, it meant the previous four weeks of her strict diet had been in vain. This excursion fell nearly at the end of the first six weeks of the diet, after which Sammi would have an endoscopy and then be given permission to take a short break from restriction to go on a family trip we’d been planning for more than a year. This possible cross-contamination debacle would force us to cancel that trip and start the six weeks of her diet from zero.

I went into a tailspin, grasping at anything I could imagine. I called the Jelly Belly factory again, horrified and furious and devastated all at once. What happened after that is best described in this excerpt from the letter I sent to the Vice President of Marketing for Jelly Belly.

“…I made a frantic call to Jelly Belly to see if perhaps the bags had been mislabeled. Kit McCoy called me back right away and immediately set to work checking lot numbers, rechecking with the production facilities and calling me several times that day to update me on her progress. While she did that, I steeled myself for the possibility that, because we may have contaminated my daughter’s system with peanuts, we would have to postpone her endoscopy and cancel a family vacation we had been planning for over a year. Our window of opportunity for making this decision was very narrow.

“Imagine my relief when Kit contacted me that very day to give me the news that the bags of Jelly Bellies that my daughter had eaten were simply “old film” – the beans inside were produced without any offending allergens. Kit’s quick research saved us an additional month of restricted diet, the loss of our long-planned vacation and tremendous heartache. She deserves your praise and any commendation you can give her!”

I don’t know anything about Kit McCoy. I don’t know if she understands what she did for us, but I’ll say this: Without Kit McCoy, and her compassion, we would have lost this moment below during our vacation three weeks later:

Debi Lewis the mighty.1-001

And more than that, I would have lost time, faith and so much energy on recreating what we’d done all over again. Kit McCoy, wherever you are, you gave us time. You gave us space. You gave us hope.

Thank you.

** NOTE ON ALLERGENS: The elimination diet protocol our family followed required only that we avoid foods prepared on shared equipment with the foods our child was avoiding. Jelly Belly does share a facility with foods that include tree nuts. Also, while coconut was considered a fruit by our doctors, some consider it a nut. Certain Jelly Belly candies do contain coconut. For more information about allergens, read the Jelly Belly FAQs or call 1-800 -522-3267 and talk to a Jelly Belly representative.

Follow this journey on Swallow, My Sunshine.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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To the Potential Guardians of Our Son With Special Needs

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We would like to ask you to be our son’s guardians in the event something happens to us. You can definitely decline if you so choose, but before you decide, we’d like to tell you what you would be getting yourselves into.

Caring for him isn’t an easy task and can often be exhausting. There will be sleepless nights, hectic days and moments filled with so much worry and anxiety that you might succumb to tears in your room. The nights of interrupted sleep won’t lead to a nap the following day. You’ll still need to chauffeur him to therapy appointments and take mental notes of new exercises to perform on him throughout the week. You won’t be able to rest when and if he decides to nap for you. There will be appointments to coordinate, food to blend, social workers to call and insurance companies to follow up with. Oh, and let’s not forget housework, laundry, other children and your social life that is virtually nonexistent.

There may also be days when you don’t take a shower and, quite possibly, may be wearing the same clothes from the previous day. At 3 p.m., you might realize you haven’t brushed your hair or your teeth yet. You’ll pray no one notices.

Speaking of praying, I believe you will also become close to God, Jesus Christ or any other higher power of your choice; you’re going to need it. I believe praying for health and healing will become a daily ritual, and sometimes begging for the strength to get through another day will be top of your prayer list.

You’ll also need to be strong and brave. Strong enough not to get upset at someone who stares at him or whispers and points in your direction. Brave enough to hold your head high and not let anyone pity you or him. Strong, brave and proud are definitely requirements. You’ll need to be proud of this little boy for who he is and embrace all of him.

Melissa Schlemmer the mighty.2-001

You will be required to celebrate every accomplishment he makes. He has yet to sit on his own or utter a word, but you better believe that when he does, there will be a large party in his honor.

Get ready to be patient because progress can be slow. But you’ll marvel at how he continues to work hard with fierce determination and never gives up. The challenges he faces might bring the most heartache, but he’s the ultimate source of happiness. When he smiles, you will feel so much joy. I believe there’s definitely a piece of heaven in his smile.

He smiles with his entire being and means it. There’s no faking it with him. When he laughs, you will forget all of your worries, and I believe you will thank God for that moment. You’ll set aside your list of “wants” and simply be thankful.

He loves unconditionally and without expectations, and that is what we require of you. Hug him, kiss him, cheer him on, never give up and love him beyond measure.

This may be the greatest challenge of your life and one that you would never regret. You’ll learn more about yourselves and others than you ever imagined. You’ll learn what it truly means to love and be loved. Unfortunately, you’ll also become familiar with disappointment and grief, but his smile will trump that any day.

This may be one of the greatest responsibilities anyone will ever request of you. And in our eyes, it’s also the utmost gift.

We can talk about the “package deal” (two big brothers) at another time.

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How Jolly Ranchers Help Me Live in a World Full of Food I Can’t Eat

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I peel away the wrapping paper to reveal the colorful cardboard box holding my birthday present, a mega box of green apple Jolly Ranchers. I unwrap the slippery plastic wrapper for the hundredth time this week and pop the sticky sweet goodness into my mouth. You’re probably wondering who thought giving a 14-year-old a box of candy as a present was a good idea, but it’s more than just candy to me — it’s my sanity. I know it sounds weird, but when it feels like your genetics betray you and don’t let your organs do their job, like digestion, hard candy becomes a pretty big part of your life.

Picture yourself sitting in a room full of tables and chairs with a hundred other people surrounding you. Everyone is told to sit, so you do. Waiters bring out silver platters covered in tall reflective covers, concealing the origin of an incredible smell. They put the plates down and an array of delicious-looking food is revealed. You look down the line and see everyone is excited about what was put in front of them, it is everyone’s favorite meal. This has to be some sort of heavenly dream for everyone else, but for you it’s some sort of nightmare. Imagine sitting in front of food you so desperately want each and every day, and you just can’t have it.

You are surrounded by a world advertising this “incredible experience.” Food is ingrained in our society, and for a good reason, too; if it weren’t, all you food-consuming mammals wouldn’t be here today. What people might not realize is that eating is a part of every aspect of our culture: you go to a party and there’s food, go out with friends and there’s food, you go to the movies and there’s food, go to a carnival and there’s food and you get together for Christmas and there’s food. And for Pete’s sake, there’s Thanksgiving, a holiday that’s supposed to make us think about what we are thankful for and appreciate all that we have, but instead most people just stuff their faces with food and stare aimlessly at the TV watching football.

Commercial after commercial is about food. “All you can eat” this and “finger-licking good” that. I’ve stopped watching regular TV for the most part for exactly this reason, but for the sake of research I watched primetime TV for an entire hour recently and about 60 percent of commercials that hour were for a restaurant or somehow related to food. Driving down the highway, BOOM, a million food billboards and signs for food at the next exit. There’s no escaping the vivid pictures of the juicy, greasy food I cannot eat. And the last thing I want to hear on my Pandora during the ride to the hospital is a commercial telling me to drop everything and drive to the nearest fast food place to try some burger or fries I can’t even smell without gagging, let alone eat.

My bag of candy is the only way I can survive sitting at meals. At parties, I have my pack of Ice Breakers; at Thanksgiving, I couldn’t get by without my pie-flavored gum and apple Dum Dums; and at birthdays I have my trusty birthday cake gum. Sounds great, right? Candy for breakfast, lunch and dinner — every kid’s dream. But what about when I start to get tired of the sweet flavors of Jolly Ranchers, and I can no longer ignore the more than slight chemically taste of the artificial gum? Most people can just put down the candy and go eat a cheeseburger. I can’t.

Sometimes my green apple Jolly Rancher can’t help. I don’t really sit down with my family for meals, and I don’t go out with friends if I know the night will revolve around food. I make it work for the important parties and events for holidays and birthdays, but the rest I have to learn to let go. I have better things I could be doing than eating; with my feeding tubes and central line I can eat, drink, talk and walk all at the same time. I could be learning Mandarin, or training to be an undercover CIA spy or heck, finding out the key to the universe.

My green apple Jolly Ranchers really do pull me through, most of the time. If it weren’t for them, I would’ve spent many birthdays and school events wishing I could taste something. Even though they can only help so much, my candy means I can be more comfortable around people that are eating. A green apple Jolly Rancher is so much more than another sugary snack; it truly is my sanity.

Follow this journey on Climbing Rivers.

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5 Things I Learned as a Physician and Mother of a Medically Fragile Child

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I’m a neurologist, and my daughter has severe neuromuscular disease. Here are the five things I’ve learned as a physician and mother of a medically fragile child:

1. You can feel really, really alone.

Having medical knowledge when your child has a serious illness is a double-edged sword. You’ll likely get a diagnosis faster, but you will also struggle with knowing too much. You know everything that can happen, and you’re able to recognize the signs — long before anyone else — of advancing disease. You keep it to yourself because you don’t want others to worry.

It helps to find people who understand, and for me, this has been a closed Facebook group for parents like me. They are the true experts of the things I care about, and I can be “just” a mom there.

2. Being “just” a mom means you don’t always have all the answers, and that’s OK.

My first experience as a patient in my field was when my medically durable 3-year-old son got viral meningitis. I felt like a paranoid neurologist mom taking him to the hospital with headache. When the spinal tap showed 800 white cells (normal is under 6), my medical knowledge went out the window. This is viral, but this is a lot of cells! Viral meningitis can be managed at home — are they going to send us home?

The doctors wanted to leave it up to me, but I felt paralyzed. I called my friend (another neurologist mom) who cleared my head: I was a mother who didn’t feel comfortable taking her son home, so we belonged in the hospital.

3. Desperation is powerful.

We are trained to practice evidence-based medicine, but when you’re facing a devastating disease without a cure, you want to believe in something (or someone) that can offer hope. Science is important, but when there is no cure, you still have to offer hope (see #4).

Michelle Moon the mighty.2-001
Photo credit: Aubrie LeGault, Capturing Grace Photography

4. Kindness goes a long way.

Having a child in the pediatric intensive care unit (PICU) can be hell on earth. I think I put up a good front most of the time, but the wounded animal was not far from the surface. When things were not going well, I clung to the little acts of kindness from our caregivers: sympathetic looks, pats on the shoulder, acknowledgement of my daughter’s beauty and strength. I believe the simple act of caring can give hope and get families through the worst of times.

5. Serious illness can be financially devastating. Families with medically fragile children need support and the system for determining disability and eligibility for services is broken.

I think we all know this, but you don’t understand how bad it is until happens to you.

When my daughter turned 4, she could no longer sit without support. Her disability was apparent with a fleeting glance, but she didn’t meet our state’s definition of disabled. I was sure that I, a motivated neurologist mom, could change this with a few phone calls. I was wrong. It eventually worked out, but it took eight months and it was ridiculously complicated. When we finally got the letter from the state that acknowledged that my now BiPAP-dependent daughter was disabled, it felt like a victory. It meant that we finally had a chance to get much needed help.

I have almost 20 years of medical experience and treat people with developmental disabilities that most have never heard of. If I had this much difficulty getting my state to simply acknowledge the obvious about my own daughter’s disability, what is it like for everyone else?

I believe that our world would be better if everyone had a personal connection with a loved one living with disease and disability. This is why we share our stories.

Follow this journey on Julianna Yuri.

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Facebook Banned Her Photo. So She Started This Selfie Challenge.

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When Mighty contributor Lisa Goodman-Helfand tried to promote her personal blog, “Comfortable in My Thick Skin,” on Facebook, her ad was banned because of the photos she’d chosen, one of them being a closeup of her face. Goodman-Helfand has scleroderma, a chronic disease that causes hardening and tightening of the skin and connective tissues, according to the Mayo Clinic. There’s no known cause or cure, and even though the disease affects about 300,000 Americans, not many people are familiar with it.

According to Goodman-Helfand, Facebook said the photo, which also featured a friend with scleroderma, focused on a specific body part and that images like this “typically receive high negative feedback.” Only after the story gained traction on Yahoo Canada did Facebook reverse its decision, saying the ad was “mistakenly disapproved.”

Goodman-Helfand wanted their faces to illustrate how scleroderma affects people differently. And after this incident, she realized more people needed to see the faces of this disease, so she started the Face Off For Scleroderma campaign Sunday.

Goodman-Helfand is calling on anyone, not just those with scleroderma, to post a selfie on social media, makeup-free with the hashtag #sclerodermaselfies. While she wants to raise awareness for the disease, she also hopes to promote positive body image for everyone.

“This is about showing the world that beauty comes in all forms and we should not allow society to define beauty for us,” Goodman-Hellfand wrote on her blog.

While many users have taken to Twitter and Instagram with their scleroderma selfies, former “Full House” and “America’s Funniest Home Video” star Bob Saget promoted the campaign on Facebook.

 

 

 

Every #scleroderma patient endures unwelcome change and challenges. The SRF supports Lisa Goodman-Helfand...

Posted by Bob Saget on Saturday, August 8, 2015

 

Families from all over have also shown their support.

#sclerodermaselfies The Sharons are going bare for scleroderma in honor of the more than 400,000 patients who suffer...

Posted by Kimberly Johnson Sharon on Sunday, August 9, 2015

#sclerodermaselfies I’m going bare for scleroderma in honor of the more than 400,000 patients who suffer from this rare...

Posted by Michelle Blatt Moody on Sunday, August 9, 2015

I was nominated by Julie Cohen Benensohn for #sclerodermaselfies I'm going bare for scleroderma in honor of the more...

Posted by Rachel Field on Sunday, August 9, 2015

#sclerodermaselfies I’m going bare for scleroderma in honor of the more than 400,000 patients who suffer from this rare...

Posted by Emily Berman Crane on Sunday, August 9, 2015

 

Men posted makeup free photos, too.

#sclerodermaselfies I’m going bare for scleroderma in honor of the more than 400,000 patients who suffer from this rare...

Posted by Gregg Hollander on Sunday, August 9, 2015

#sclerodermaselfies I'm going bare (no makeup) scleroderma in honor of the more than 400,000 people who suffer from this...

Posted by Joseph Hailpern on Monday, August 10, 2015

 

Join in on the movement and post your selfie today. Here are Goodman-Helfand’s instructions:

  1. Take a selfie of yourself without any makeup on (girls, boys, and men — you are encouraged to participate).

  2. To learn more about how this campaign started, click here.

  3. Scroll down to find the details on how to donate and make a donation, if you have the means to do so.

  4. Copy and paste the message below (only the text that is underlined should be copied and pasted) with a picture of your bare face (no makeup) on Twitter, Facebook, Instagram or any other social media that I don’t even know exists.  If you do all three, that will give the campaign the most “points “ for the hashtag. Make sure to include your new bare-faced  selfie with the following message:

#sclerodermaselfies I’m going bare for scleroderma in honor of the more than 400,000  patients who suffer from this rare disease.  I nominate (tag a friend), (tag a friend) and (tag a friend) to take their face off for scleroderma and keep the chain going by nominating three more friends. Go to www.comfortableinmythickskin.com to make a donation, learn more about the campaign, and the bare face that started it all.

*We want everyone to participate; men and kids’ bare selfies send the same important message!  Anyone not comfortable posting a bare selfie is still encouraged to join in. We want to show that all faces have a place on Facebook.

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How I Found Help When My University Lacked Mental Health Services

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There are lots reasons to be anxious in college, including the excess tests, the pressures of achieving the right grades, varying teaching styles, big classes and being away from a comfortable environment. This doesn’t even include the financial strains during school and the debt when it’s over. The list goes on and on.

Unfortunately I’ve suffered not only with anxiety in college, but with a different demon — obsessive-compulsive disorder. When I went to study abroad two years ago to complete my degree, it almost finished me.

When I went to school at the University of San Francisco, one of my first things I did was visit one of the counselors to see if my mental health services were covered. The answer was yes! It was brilliant. Not only did I feel in charge of my health for the first time, I could afford it.

After a year I transferred to a school abroad in Dublin, Ireland where there were no counselors and no real resources. The school was small and it was hard to find someone I could really trust with my needs. I became stressed out and irritable as my final year began. It’s hard to talk about mental illness to someone who isn’t trained or doesn’t specialize in it. Feeling isolated and misunderstood, I just shut down. During my second to last semester I had a teacher that made my OCD spike so high, I fell into a major depression. Getting out of bed was a chore. I tried to be happy, but my head was making me feel anxious and my body wouldn’t function properly. I was seeing a counselor at the time, but I needed more support than what I could find. I wanted to have a Taylor Swift attitude of “Shake it Off,” but my life had slowly become like Taylor Swift’s “Blank Space” music video.  

I was one semester away from finishing my time abroad but was so depressed I didn’t want to go back. I felt disconnected from my body. I was far removed from everything and everyone. I was afraid of what I saw in the mirror. I was between apartments during this time and my friend, Rion (who I met at a job in Dublin the previous year), said I could stay with her when I got back.

I didn’t know Rion very well, but she was the kind of person I knew would make me feel at ease. When I walked into her beautiful haven of an apartment, I immediately fell into the depths of the sleep. But this time I was resting because of sheer exhaustion, not from my depressed state. Rion arrived home later that evening, gave me a long hug and said how much she missed me. She has a way of making me feel like I am the most prized human on the planet. I stayed with her for two blissful weeks. The depth of her patience and love made me feel like I was safe and could talk about the burdens in my life. I didn’t want to weep anymore. I knew when I climbed into bed next to her I would sleep soundly. Little did I know we were both being support systems for each other. The circumstances of our own anxieties and worries brought us closer together. I knew the special gift Rion had brought me, which was not only her friendship, but also the gift of consistency I needed to calm the storm that had festered in my mind.

While I couldn’t find the support I needed at the university, reaching out in a different way helped me to find it in myself to face this disorder. There are still times of anxiety, but I know I can talk to a friend and develop a healing pattern for myself.

But it shouldn’t need to get that severe before you take action and seek help. What I really needed was more support in the beginning and mental health resources that are lacking on many campuses. My advice for students going to school who have limited or no counseling centers, or for the students who are going abroad where there are none, is to check to see what resources are available. It may mean stepping outside of the university setting and seeking alternate resources. I also realized my peers who were going through similar experiences were valuable resources, and I was not alone.

The challenges we face are not isolated experiences. Help is available, even when it’s not in the traditional ways we’ve come to expect. In an ideal world, mental health resources would always be available, and people would understand mental illnesses are just as real as physical ones. But we’re not in that ideal world yet. 

So if you find yourself in an overwhelming situation and it seems like all hope is lost, remember no education is worth your life. I’ve learned and continue to learn that seeking help is a strength, not a weakness. Reach out to someone you trust. Take a break. Regroup and then regain the life you deserve.

The Mighty is asking for mental health related back-to-school pieces. Parents: do you have advice or a story about navigating the school system with a son or daughter with a mental illness? Students: Do you have a back-to-school story or tips for maintaining your mental health while in school? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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