Owner, Chief Aware Bear, Blue Bear Aware
FoodASC Member Since 2016
Please tell us about yourself and why you are interested in food allergies, gluten sensitivity, celiac disease, eczema, EoE and asthma.
You could say that I’ve lived in the world of the atopic my whole life and it has become an integral part of my life and my family’s life.
As a child, I had severe asthma and environmental allergies which weren’t diagnosed until I was around 6 or 7 years old. Until that point, my mother was repeatedly told that I had a cold, the flu or some other illness.
A few years later, I developed eczema as well and started undergoing my first round of immunotherapy. (I’m in my fourth round of allergy shots over the past 4 decades. Wee, right?) Although my asthma, allergy and atopic dermatitis resulted in emergency visits, epinephrine shots and the oxygen tent, I didn’t think much of these conditions. I was just used to it.
My husband has oral allergy syndrome. Fortunately, I never really cared for melon which is one of the primary foods that cause him to react. (Destiny! Lol) Although not life threatening, we happily avoid melon and papaya.
Our first child was born with eczema. I know that they say that isn’t possible but I have pictures and beg to differ. Of course he was beautiful, but he had eczema all over and horrible cradle cap. He was constantly scratching himself bloody and colicky to boot. I was nursing so I was told to watch what I ate but nothing seemed to be an obvious issue. We tried eliminating different foods but nothing didn’t seem to help.
At several months of age, it seemed he was always hungrier than I could keep up with so we increased the formula supplement which quickly made him worse. On a hunch, the pediatrician prescribed Zantac. Within days, my colicky baby was calmer and finally sleeping. So were we… but he still had frequent diarrhea and vomiting. We were told to try increasing formula to supplement his diet. No change. We tried changing cow milk formulas and switched to soy based and hypoallergenic formula with no change.
After a lot of trial and error, including adding rice cereal, we finally settled on a cocktail of breast milk, soy formula AND cow milk formula which he seemed to tolerate. Still some issues but no vomiting. We shaved off his hair, which solved the cradle cap, and sleeping improved for all of us. Fortunately, we had a few months of fun and wonder with our first born when we finally felt human and more like ourselves again. We started to venture out with our little guy more often.
Then a lick of a frozen yogurt threw us into a tailspin. We went to a pastry shop in the Greektown neighborhood in Detroit. My son had a lick of his daddy’s chocolate peanut butter frozen yogurt.
Anaphylaxis. To a lick of peanut butter.
In the 5 years since, he has developed additional allergies, several of which have also resulted in anaphylaxis and delayed biphasic reactions. It is now the drill for him to be put on a round of the “hospital cocktail” to help get him through the 72 hour biphasic watch period. I have no idea if that’s the name of it. They should call it the 72 hour sleep deprivation terror period or something like that. I thank God for the help of some of the nurses. I’m still especially fond of one who brewed me a fresh pot of coffee. She may have had a halo or maybe it was just my tired eyes. Either way, the coffee was heavenly.
During that same 5 year period, I also developed a non celiac gluten sensitivity and was diagnosed with fibromyalgia and EoE.
Currently, my daughter is on an elimination diet because we think she may also have issues with wheat if not gluten like her mommy. Three days in and her skin is clearing up a bit so we may be on to something. Ironically, wheat is not one of my multiple food allergic son’s allergens. In fact, he eats copious quantities of wheat and gluten filled items all day, every day. Sometimes I think the big guy/lady upstairs has a wicked sense of humor.
Please tell us about your business.
A little over a year and a half ago, I bought Blue Bear Aware. I knew there were 4-5 other retailers supporting our food allergy community but Blue Bear just called to me.
When I heard that the business was being sold, I made an offer. It wasn’t an easy decision as I certainly wasn’t planning for this purchase and I already had a very busy life and full-time day job. I have two very young children with a full-time caregiver. My son was in treatment with Dr Xiu-Min Li so I didn’t have a great deal of money to invest up front.
Yet, I knew I had to buy it. If anything, I felt that I owed it to my food allergy family support system to keep yet another resource available. Growing the business is a goal, sure, but I always want folks to have options. I want them to know that they are not alone and I want to keep providing yet another source of fun and functional products to support and enhance their lives with food allergies or sensitivities.
I want them to know that they are not alone and I want to keep providing yet another source of fun and functional products to support and enhance their lives with food allergies or sensitivities. Click To Tweet
I have so many ideas that my Asana Task board has become insanely huge and I’ve had to make a few changes in my life to allow me just a little more time. I’m certainly volunteering much less than I would like right now.
Bringing Blue Bear Aware back to the popularity it once had has been slow as I balance the many things in my family’s life but I know it will happen and I’m looking forward to it’s growth.
Describe a challenging experience you had related to food allergies, gluten sensitivity, celiac disease, eczema, EoE, or asthma and your lessons learned.
By nature, I am more of a risk taker but by profession and training, I have learned to be very organized, controlled and risk averse.
Outside of Blue Bear Aware, my career for the past 16+ years has been as an IT Project Manager. Over the course of a 7 year period, my husband had a heart attack, I lost three beloved pets, my son had several health challenges including multiple episodes of anaphylaxis, surgery, speech therapy, OT and I developed health issues.
Initially, I wanted to fix it all. Then I switched to wanting to predict the future. Finally it hit me – Risk Management.
As Walter Wriston said, “All of life is the management of risk, not its elimination.”
With each event I learned that I cannot truly avoid, let alone predict, the harder experiences of life. Not even if I hide. Life is unpredictable and cannot be controlled and it is that ever changing, unpredictable state that is part of the struggle AND the beauty of life. I almost had a nervous breakdown at the peak of our experiences until I remembered and accepted that total control was an illusion.Life is unpredictable and cannot be controlled and it is that ever changing, unpredictable state that is part of the struggle AND the beauty of life.Click To Tweet
I had no control over anything but my own actions and when I finally accepted that, I became more calm. I was more focused. I was more present.
I began to evaluate things in the moment and make decisions that would help us limit risks and know that we would do what we needed to if/when something happened.
I still plan and prepare for trips, making intentional choices that will help us limit potential issues, but I no longer exhaust myself (and my family) thinking about ALL that could go wrong. Rather, we talk through our pre-eating plans (wash hands, wipe surfaces down, keep hands to self, etc.) and of course our action plans.
We have gentle reminders in between all the fun and giggles but we make sure to really have lots of fun and giggles.
My purse has been traded in for a backpack with wipes, meds and safe snacks. Although tattered, I love it and it is symbolic of xyz. I’m sure I’ll be patching it for many years before I finally retire it. 🙂
Describe a rewarding experience you had related to food allergies, gluten sensitivity, celiac disease, eczema, EoE, asthma.
No one specific experience, per se. It’s rewarding for me to find new ways to safely feed my family and in knowing they are healthy and thriving. It’s great to hear the pediatrician share how impressed she is with my son’s growth despite of the large number of food allergies and sensitivities that we navigate.
As a former support group lead, I experienced many personal messages of thanks and gratitude for just being there to listen and help guide. I often miss that but as Blue Bear Aware grows and I continue to meet and engage with our customers as well as the broader community, those sentiments are again being shared.
One of the most empowering things we can do for ourselves is to help and support others and I am grateful for being in a position to continue to do so.
What motivates you to do what you do?
Love, Compassion & Empathy. I know it sounds cliché but I do almost everything I do because I care.
Big heart and all that. I want to help.
Blue Bear Aware has been an online retailer in the food allergic community for years now but to be perfectly honest, my longer-term goals for Blue Bear go far beyond just selling resources. It’s premature for me to share too much right now but expect more from Blue’s Family in the future.
Do you have a go-to resource? If so, what is it and why is it useful?
Oh, my. If I had to pick one I would say the internet in general. I’m naturally curious and a problem solver. The internet provides me with a large library of information. I have to go in with an open and objective mind because information can be confusing at times but knowing that helps.
More specifically, there are amazing people out there who put their heart and soul into sharing, educating and supporting others. The ones that stand out: Lisa Rutter & the many support group leaders who make No Nuts Moms Group the place to connect. My friend Sharon of Nut Free Wok. I don’t have enough space here to explain how amazingly delicious her recipes are, let alone her awesomeness. She’s a real gem. There is also Tracy of NutriMom. I just love her creativity and sense of humor. As fabulous as she is, she has a heart of gold and a fierce personality which resonate with me. Grateful Foodie. Cybele Pascal’s Allergy Free resources. Learning to Eat Allergy-Free. There are so many and because I like to play around in the kitchen, I tend to steer away from limiting myself to just one or two.
What do you wish other people knew about food allergies, gluten sensitivity, celiac disease and what’s one action that can be performed to increase knowledge and awareness in the general population?
I wish people knew how terrifying food allergies and sensitivities can be for people. Humans need Oxygen, Water & Food. These aren’t choices. They are necessities for life and one of them could kill.
Imagine living with that knowledge every single day?
It’s not as easy as just not eating the actual food because it can be a hidden or accidental ingredient. The only thing that comes close to a “guarantee” of a food being free from something is if it is certified.
Additionally, cost can be a problem for many people and add to that the fact that these specialty products are still relatively few and far between. It’s perfectly understandable how some people can have anxiety around food. They aren’t trying to cause any issues or be unreasonable. They just want to live.It’s perfectly understandable how some people can have anxiety around food. They aren’t trying to cause any issues or be unreasonable. They just want to live.Click To Tweet
Just like everyone else. And did I mention food is a necessity for that? Yeah.
Now think about how much our society includes foods in social gatherings. Everyone else is shoveling sweet things, that some food allergic people cannot eat, into their mouths at school celebrations or work events. Assuming that they do not react to airborne allergens, they may stick around putting on the biggest smile and trying to enjoy themselves knowing that they’ve been excluded. Maybe not intentionally but excluded.
It’s not a diet where you have chosen not to eat because you are aiming for the bikini season. You literally CANNOT eat something. You reach into an invisible pocket, find and press that magical brave button, and keep going with a smile on your face.
We just want to live our lives and matter. Happily and healthily. Just like everyone else.
What’s one action that can be performed to increase knowledge and awareness in the general population?
“Human behavior flows from three main sources: desire, emotion, and knowledge.” – Plato
Talk about food allergies at relevant moments to increase knowledge and awareness. For example, when planning a potluck at work, I’ll chime in with “I’ll bring in my Mac N Cheese dish. It will be peanut, tree nut, egg & gluten free.” More often than not, this will prompt someone to ask why the dish is free of those foods which leads into a conversation about food allergies. If others are around, they often participate or at least listen and hopefully learn.
On a broader scale, how about a challenge? It has to be personal. Lately I’ve been thinking it’s time to create an awareness challenge much like the ALS Ice Bucket Challenge. We can call it the “Free From” or the “Top 8” Challenge. Everyone in the challenge must either prepare a healthy, nutritious meal or have a dining experience at a restaurant that is free from at least 2-3 of the top 8 allergens. How interesting would that be to hear how the experience impacted the non-allergic members of our community?
What advice would you give to someone just embarking upon this journey?
Allow yourself to be emotional and ride that crazy emotional roller coaster, if necessary.
Work through it however you need to, but work through it and quickly. You have a whole lot of livin’ to do and the sooner you can move on to figuring out what changes you may need to make, the better.
Never let anyone else tell you that it could be worse. Only YOU can determine what you are capable of handling. We shouldn’t compare ourselves to others and this is certainly not a competition. The journey is not the same for everyone. The impact of any of these conditions and diseases can range from minimal to debilitating. My family has lived with chronic eczema which has impacted our lives most. I believe it was my friend, Author Henry Ehrlich who called it the ‘itch that can’t be scratched’. We had many periods of sleepless nights where all I could do was hold my son and try to console him as we both cried.
Get back to living your life on YOUR terms. At first, I sucked it up but I felt like I was near a nervous breakdown when the spiral of the Atopic March of eczema, food allergies, hay fever and asthma started. That first big crying session was cathartic. I cried. A lot. It was like a flood gate opened and all that fear, pain, grief, frustration, etc.. came out in full force. So I let it and then one day, I was done and I put back on my problem solving, fighting persona and jumped in with renewed vigor. I knew I might not be able to “fix” everything but I certainly wasn’t going to let any of these things ruin my family’s lives. I loved them far too much.
No matter what, you need to figure out what will work for you and that it is OKAY! You can and you will figure it out.No matter what, you need to figure out what will work for you and that it is OKAY! You can and you will figure it out. Click To Tweet
Is there anything else you’d like us to know?
I have several big announcements planned for this year with a new product offerings (apparel and accessory), a children’s e-book AND a low cost temperature monitoring solution. The exact timing of that last one is still TBD but recent testing has been promising. So many exciting things in the works!
Thank you Jen for being part of our Member Spotlight! Have any more questions for Jen? Ask them in the comments below.
Member Spotlight is our monthly column in which we interview FoodASC members to highlight their businesses, publications and personal experiences. If you are interested in being featured or nominating another member for the spotlight, please contact firstname.lastname@example.org.
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