Advocate Becomes the Patient: My Diagnosis of MS

Food allergy advocacy has been a part of my life for 11 years. In those 11 years, I’ve talked a lot about RESILIENCE, the capacity to recover quickly from difficulties or exhibit a type of toughness. My son and I have spoke a lot about this word as he struggles with many health challenges: food allergies, asthma, seasonal allergies, acid reflux and polymorphic light eruption. One of the ways that I taught him to be fearless in the face of adversity was to say, “Everyone has something.”

While my son may have experienced a heavier load than most in his short life, it’s true we all struggle with something. Some people have physical or mental health challenges, while others struggle with not being athletically or academically inclined, etc. The list of what one can deal with can be quite lengthy.

Just like you, challenges have not been foreign to my life. I’ve dealt with an array of struggles like infertility, multiple miscarriages and always by my son’s side helping him to brave his health issues.

Everyone has something.

My new something is Relapsing – Remitting Multiple Sclerosis (MS).

After struggling with a variety of more severe symptoms for six weeks, I was finally diagnosed with MS on February 13, 2017.

As much as it was a shock to my husband and me, it really wasn’t. We quickly began to piece together the last couple years of my life and it all began to make sense with symptoms ebbing and flowing during different times.

My initial inclination was to retreat; closing myself off for what has been well over five weeks being introspective and defining what this means for me and my family. The diagnosis of MS is not a death sentence, nor does it mean being wheelchair bound. Thankfully, I’m considered to be a mild case where I will live with the disease and manage day-to-day symptoms and limitations.

I’ve started on injections of Copaxone® which is not an MS cure, as there is no cure. The medication does not manage any MS symptoms rather its purpose is to hopefully minimize the number of MS relapses that could prove to be debilitating. In addition, I’ve started with a personal trainer to strengthen my body and address balance issues. Life is a little slower these days, as I begin to understand what my energy limitations are and how much is too much ensuring that I don’t add to my fatigue. I have good days and bad days, but I had those whether I had MS or not, so I’d say I’m doing very well.

I can’t thank my close family members and friends enough who have been of great support over the last 12 weeks. The calls, texts, cards and emails have truly buoyed my spirits and made me realize that this too is just another bump in the road of life.

Most of all, I’d like to thank my husband Demetrios. This May will be our 17-year anniversary. Through those years we have celebrated too many happy times to count and faced challenges side-by-side buoying one another along the way. While we are often blindsided by life’s challenges that take our breath away, that cause anxiety thinking about the unknown, one thing has always been unwavering – our love, commitment and support for one another. To quote Demetrios, “This is our life together, nothing will ever change it.”

Last, one of the largest decisions in all of this was…who will I tell? Do I keep this all to myself? How far out do I tell of my family and friends? Recently, I had a person with MS follow me on Twitter. In her profile, she listed herself as an MS Warrior since 2012. I sat with that phrase ‘MS Warrior’ for a few days and I even bothered to look up the word ‘warrior’ in the dictionary to help define what it means to me, if anything.

A warrior is a brave and experienced fighter.

I am a brave and experienced fighter of many things…

Infertility Warrior
Miscarriage Warrior
Food Allergy Warrior

And now…

I am an MS Warrior.

88 Acres are a must for food allergy families

88 Acres are a must for food allergy families! Amanda Massello, Director of Digital Marketing and Ecommerce for 88 Acres, and I caught up on Twitter one morning and that tweety relationship turned into a sampling of 88 Acres at my front door. They are very delicious, and nutritious, so I thought you might like to learn more about this fairly new item that may be safe for your household. Keep reading to take advantage of the 15% OFF COUPON CODE at the end of the interview. How timely is this interview since so many of us are trying to find safe and tasty school snacks?!

Like so many food allergy businesses, Nicole and Rob Ledoux’s started with a dream…ok, maybe not a dream, but in this case an anaphylactic reaction on Nicole and Rob’s FOURTH DATE.

Kristin: Nicole (cofounder of 88 Acres) can you share your experience with Rob’s anaphylactic reaction on your fourth date? I can’t believe you were newly dating…what went through your mind?

88 Acres are a must for food allergy families

Nicole, Rob and Emmett Ledoux
Image courtesy of 88 Acres Instagram

Nicole: I met Rob during the fall of 2010 in the old fashion way, on Match.com. While our first date was amazing — Saturday brunch in Boston followed by taking a long walk around the city with my chocolate lab, Bear — it was our fourth date that stands out. We were grabbing dinner from my local pub, when Rob looked across the table and told me to get him to the Emergency Room as fast as possible. His meal was contaminated with nuts (thankfully it wasn’t my cooking!). For most of us, no biggie…but for Rob, his throat was beginning to close due to his severe allergy to nuts! So our romantic fourth date resulted in me speeding through the streets of Boston looking like a deer in headlights with Rob in the passenger seat, calling his parents with one hand and holding his Epi-Pen in the other.

We got to the hospital where he was whisked through triage and into the ER. His parents arrived about an hour later, which was an awesome way to meet them for the first time…”Hey nice to meet you future in-laws, your son is in anaphylactic shock.” I stayed by his bedside all night, watched him the entire next day, and rid my house of nuts as soon as I got home.

This experience not only cemented my love for this guy, but spawned a pretty awesome food startup as well. And now we are married, started 88 Acres together, and have a 6-month old baby boy named Emmett!

Continue reading

Save on EpiPens and Other Household Prescriptions

Save on EpiPens and Other Household Prescriptions

Save on EpiPens and other household prescriptions? It’s a question that most of us ask ourselves. As you know, healthcare in the United States can be very expensive. While our premiums continue to rise each year, our benefits seem to dwindle. We’re paying more for less coverage, alternative foods are more expensive and the lifesaving medication cost of EpiPen® feels more expensive than ever for many families.

Many are quick to point the finger at Mylan, the maker of the EpiPen®. However, just as health insurance plans are complicated, so is the the pharmaceutical supply system. The pharmaceutical supply chain not only involves pharmaceutical manufacturers, but also multiple parties such as wholesalers, pharmacy retailers, pharmacy benefit managers and payors. These parties all play a role in determining access to, and the ultimate retail price of prescription drugs.

Dan Hammer of 790 AM Fargo Moorhead interviewed me on the high cost of EpiPen®. I prepared a variety of information to share with Dan on the topic of food allergies and epinephrine, but there’s only so much time in an interview, to be exact 13 minutes and 52 seconds. ; ) Click here to listen to the full interview.

Here’s a list of suggestions on how to save money on the EpiPen® as well as other prescription drugs in your household.

Continue reading

Food Allergy and Inclusion

Kristin Beltaos interviewed by Katja Rowell, M.D. for Extreme Picky Eating Help

Food Allergy and Inclusion: Introduction by Katja Rowell M.D.: Children may face eating challenges for various reasons. Children with extreme picky eating tend to experience higher levels of anxiety, around food and in general. Perhaps the most anxiety-provoking feeding challenge that parents face is life-threatening food allergies. Some children with extreme picky eating also struggle with food allergies, which can complicate the picture even further. Kristin Beltaos has made it her mission to help parents and children not just be safer and healthier, but thrive. We were intrigued and impressed with Kristin Beltaos’ work with parents, children, and schools (A Gift of Miles). She has graciously agreed to share some wisdom in our first guest blog post.

1. Food Allergy and Inclusion – Spotlight of Difference intrigues us. Can you tell us more?

First off Katja and Jenny, thank you for the opportunity to communicate with you and your followers.

food allergy and inclusionUsually when you think of placing a spotlight on a child you think of something positive, i.e., accomplishing an awesome grade, playing a great sport game, writing a wonderful paper or doing well in a recital. These are all great ways to shine a positive spotlight on a child.

It’s fascinating how when we are confronted with a challenging situation, such as creating a safe environment for a food allergic child, our initial instinct is to determine how a child will adapt to our environment, rather than how the situation can be modified so that it’s safe for everyone. When we only address the individual child it will almost always create a Spotlight of DifferenceTM.

In our efforts to create safe environments for children with food allergies, parents and schools alike often shine an unnecessary Spotlight of Difference TM on these children that I believe is a catalyst for anxiety in food allergic children as well as food allergy teasing and bullying. We need to understand that safety does not always equal separateness and vice versa. I believe it’s our inability to view the picture creatively and holistically that causes us to go the easy route and shine an unnecessary Spotlight of Difference TM.

When I use this in my training, I have attendees actually work through real life examples on how to create more inclusiveness and diminish the Spotlight of Difference TM. It’s really stirring to see people get creative and excited about how to make life for a food allergic child better. I think so often we don’t like what is happening, like an allergy table, but we don’t take the time to think about how we can do it differently.

2. Food Allergy and Inclusion – How does this relate not just to food allergies, but also children with extreme picky eating, and even beyond food, to other differences?

I think we shine a spotlight more often than we think. Let’s examine when treats are used for incentives, rewards and celebrations.

Food Allergy and InclusionI always like to share about the first year when my youngest son was old enough to eat Halloween candy. My youngest son sat down to Twix®, Milky Way® and Hershey® candy bars while my child that has food allergies had in front of him Starburst®, DOTS® and Smarties®. You cannot look at these treats and equate them as being in the same category. You can’t “sex up” the non-chocolate treats, there’s just no comparison, unless of course you aren’t a chocolate fan.

My point is, you wouldn’t have your child’s three friends over and provide three of the children with delicious chocolate and one child with the other variety. How do we solve this dilemma? If you’re having a school-wide celebration, then that means finding a treat that is safe for all based upon all the dietary restrictions whether that be food allergy, food intolerance, diabetes, Celiac disease, autism, extreme picky eating, ADD, ADHD, etc. If you’re having a classroom celebration then that means finding a safe treat based upon the dietary restrictions within each classroom.

Spotlights don’t always have to be related to food. Each child may learn to read or understand math at a different pace. Stickers, colors, or Popsicle sticks may be used to track progress. Peers will know what level you are at in reading based upon the tracking system utilized. Children may be called out in the hall, to at a separate table or moved to a different classroom for assistance. If a child is learning at a slower pace, he/she may feel embarrassed. I don’t have the answer to this type of spotlight, but as you can see, often times we probably don’t even know that we’re shining a spotlight on a child.

While it may require additional planning, many schools have successfully found ways to socialize, celebrate, incentivize, reward, learn and craft without food or within restrictions surrounding food. It simply takes a little extra effort, and more importantly; just imagine the difference you make in a child’s life that is dealing with a challenge.

To read the rest of the interview about Food Allergy and Inclusion, click to enter the Extreme Picky Eating Help website.

Food Allergies Are More Than An Awkward Moment

Food Allergies Are More Than An Awkward Moment or Two

Food allergies are more than an awkward moment, yet when you are a parent to a child with a food allergy, or you are the person who has the food allergy…most of the time you feel like you’re asking for special treatment rather than a safety requirement. We’ve all seen the eye rolls, the teasing, the telling glances and even some “friends and family” that are embarrassed of our constant questions. I have always said, “Who would ever choose to live this way?”

John Espinosa messaged me over LinkedIn and shared with me his recent food allergy experience that opened his eyes and caused him to find his voice! I’d like to share his post with you because as I advocate for my son and for other children that have food allergies I realized John’s message needs to be heard LOUD AND CLEAR. He exemplifies everything that we want our kiddos to be…to be confident enough to know who they are and what they need! We want our children to believe and communicate his same messages: “My life should be worth more to you than an awkward moment or two.” and “I’m empowering those who are peer pressured towards death to fight for their lives.”

Join me in READING his story and be sure to SHARE HIS BRAVENESS with others:

“Friday Feburary 26th was a wake up call. A white chocolate chip macadamia nut (… really cashew) cookie landed me square in the hospital. That Friday, I learned to be adamant when it comes to food allergies. Show me an ingredient list. Call out friends that snicker or roll their eyes when I ask the waiter to clarify whether kitchen equipment is scrubbed well between meals. Shut down people who bother me about how my epipens make my pants look clunky.

I AM DONE feeling like an “inconvenience. Continue reading

Create A Support System You Want and Need

Create a support system that you want and need sounds like an enormous undertaking, especially in the sometimes-harsh, female environment of snobbery and cattiness. I have wondered, is there room for friendship with women who are self confident, yearn for a true connection and mutual support through all phases of life while making beautiful and fun memories together?

Creating a support system is challenging, but can be done.

Who wouldn’t want friends like the women from Sex and the City?! They laugh, cry and fight…but are always supporting one another through it all.

I’ve spent a good portion of my life trying to find my Sex in the City version of best friends. I’ve had plenty of friends in my life; but I’ve never had the feeling, deep in my heart that these girls were here to stay. Many of my friendships felt temporary, like a new tube of mascara, short-lived as it clumps, flakes and dries out in due course. I want women who, despite our different natures, find one another inseparable as we live out the storylines of our everyday lives.

Now that I’m in my, ahem, late 40s I can finally say that I feel like my Carrie, Samantha, Miranda and Charlotte are found…and I’m grateful that there are more than four fabulous women that have agreed to take me on as friends for life. ; ) A friend of mine (MK are her initials) once said to me, “I’m in this for the long haul.”

Many women have confided their difficulty in developing close friendships. I’d like to share how I managed to create a support system of beautiful women.

To create a support system means examining what kind of friend you are.

To have good friends, you must be a good friend. Be sure to clean up your clutter in order to create a support system you want and need!

To have good friends, you must be a good friend. Be sure to clean up your clutter!

“Maybe the past is like an anchor holding us back. Maybe you have to let go of who you were to become who you will be.” ~ Carrie Bradshaw

I read this interesting entry from Karol Ladd several years ago and it has stuck with me ever since, The Seven Qualities of a Good Friend. Take the time to read her entry as it’s a great way to examine what kind of friend you are. Be sure to commend yourself for your greatness and clean up the clutter that is preventing you from being the very best you can be. To create a support system, this is the first step.

Be brave enough to ask for what you want and need.

“Be bold enough to use your voice, brave enough to listen to your heart, and strong enough to live the life you’ve always imagined.” ~ Carrie Bradshaw

This one is a toughie for many, including myself. Recognize that it’s ok to ask for help, a listening ear, a closer friendship, an afternoon or night out on the town. If you don’t ask, you won’t get and if you don’t get, you’ll just continue to feel unfulfilled.

My parents are deceased, my in-laws are out of state and elderly, my brother is in California and my sister is in Massachusetts so family support is not readily at my fingertips. I had to start asking a few of my close friends if they would be my family, aunts to my boys or I would continue to feel isolated and lonely. This wasn’t easy for me…but the positive end result outweighed any anxiety I had in putting myself out there.

When you ask for what you need, be sure to clarify what family means to you and how you want to create a support system of mutual comfort. If you’re really nervous, use your sense of humor to deflect any discomfort, “I would like to have you as my family, not in a Jerry Springer way, but more along the lines of Oprah.” You get the same point across, yet explain there’s no crazy to be had. ; )

Be vulnerable enough to share.

“Maybe we can be each other’s soul mates.” ~ Charlotte York

Be vulnerable enough to share your life with others. It's the first step to create a support system you want.

Be vulnerable enough to share your life with others. Letting people in is the second step to create the support system you want.

Life has given us all a bunch of lumps along the way. Many times these lumps are truly blessings, becoming a part of our fabric and forming us into who we are.

Our ability to be vulnerable defines the closeness of our friendships. Check out this entertaining, funny and candid TED Talk from Brené Brown, she is a personal favorite of mine, on The Power of Vulnerability.

Remember after you watch the 20-minute video: We are all storytellers. We are all worthy. We all have the ability to fully embrace vulnerability. We are enough. We all want to create a support system.

Friendship needs more than a 90-minute download.

A BFF and I excited for our trip to Seattle. Create a support system by traveling with your friends.

A BFF and I excited for our trip to Seattle.

Friendships don’t magically last for forty years, you have to invest in them. ~ Carrie Bradshaw

I spoke at a conference in Seattle recently and one of my Sex and the City girls agreed to travel with me and be my Karen, Grace’s personal assistant from the show Will and Grace. In my 46 years, it was the first time that I had ever traveled with a girlfriend. In addition, it was the first time I had left my children since my eldest was 18-months old, he’s now 10.

The trip to Seattle made me realize, there is so much more past the 90-minute download. Whenever I would meet up with a friend for lunch or dinner, shopping, a movie whatever…there’s this 90-minute download that always happens to get one another caught up with what is happening in each other’s lives.

After the 90-minutes, that’s where your friendship’s story begins…

You laugh, you begin to enjoy yourself in a different way and a bond forms that one cannot experience in the traditional 90-minutes. Circling back to my Seattle trip…there were memory burns made on that trip. We were able to get outside of our roles as mothers, wives, cooks, bill payers, and of course, Queen of the Toilet Scepter. We were able to step outside of these roles and become women, our truest selves who were travelling and fulfilling our own needs, talking about what is important to us and just plain being silly.

For those of you with young ones yet, I know it sounds like it might never happen…but it will. It did for me finally at 46! Speak with your husband or partner on how to create this kind of opportunity, it doesn’t have to be a travel trip but even just day away with a friend or friends. To create a support system, you need to invest time. Continue reading

Every Day is a Fresh Start – A Clean Slate

I sense my eldest son is working on a marvelous Mother’s Day gift in his Technology class. Technology is a fancy word for computer class.

First he asked for a picture of me in a jpg format – checkkristin-color-corrected-cropped250

Then I had to answer a few questions:

What is my job title? – Mom, Queen of the Toilet Scepter…ok I won’t tease you anymore I just said Consultant / Licensed Trainer ; )

What do I consider my greatest accomplishment? – Being a mom to my two beautiful boys.

What is something that a say all the time? I put that question back in his court…what do you think I say all the time?

I wanted to know what he thinks I say all the time. I wanted to know what he remembers. We mothers say so much that we wonder what is retained. I realize that was a risky question to put back in his court. He could say, “Eat your vegetables,” Clean up your room,” “Will you two stop arguing with one another,” “Did you do your chores?” “Is your homework done?” While I know it was risky, I had some confidence he would remember something more important, more philosophical…something that’s a tool for life.

CleanSlateHe was very proud of his choice, “Every day is a clean slate.”

I hope he always remembers that…no matter how difficult life can be…every single day is a clean slate for all of us. There’s power in knowing that things can always be turned around, that second chances are humbly given to each of us and that trying our very best is never out of our reach.

How will you spend your clean slate each day?

Food Allergy School and What Not To Do

Where back to discuss Part 2 in the series of how to prepare for school with a food allergy, this entry’s topic is Food Allergy School and What Not To Do. In case you missed it, check out the first post Prepare for School with a Food Allergy, Part 1 which has my Top 10 Tips to prepare for school with a food allergy. In this entry, I’ll share my Top 5 Tips of what not to do when preparing for school. Don’t forget, there’s one more in this series to come, What To Do When Your 504 Plan Is Violated, Part 3.

Food Allergy School and What Not To Do

1.  Don’t Sign A Release of Medical Records

food allergy school and what not to do - do not sign a release of medical records

Never provide a release of medical records for your school.

When you think about your child’s food allergy, school and what not to do it’s very important to not feel pressured to make quick, uncomfortable decisions. Medical Information is extremely private and not meant for public consumption. Never sign a release of medical records to your school; there’s nothing worse than school staff or even a school nurse or health paraprofessional interpreting your physician’s diagnosis and notes and drawing conclusions regarding your child’s medical information. A letter from your allergist is sufficient. See the first in the series entitled, Preparing for School with a Food Allergy, Part 1. Continue reading

A Gift of Miles Launches New Website

Website Details a Holistic Approach to Food Allergy Education For Families, Childcare Providers and Schools

a-gift-of-miles-food-allergy-consultingA Gift of Miles is pleased to announce the launch of a new website that details Kristin Beltaos’ holistic approach to food allergy consulting and education for families, childcare providers and schools. The updated website more clearly outlines Kristin’s services including customized food allergy management life skills, education and plans utilizing evidenced-based practices. Ultimately, clients learn how to proactively manage food allergies in their environment while keeping children with food allergies safe, happy and included.

Taking your life or organization to the next level has never been easier. Leverage Kristin’s customized consulting, expertise and training programs to help you identify your goals, develop strategies and action plans that establish a new order.

Whether you’re in Minnesota, nationally or internationally, visit the new website and make a selection under Food Allergy Consulting or Other Services to learn more about how you can find support and assistance that will help you transition to your new chapter.

As always, thank you for taking the time to read my post.

I wish everyone a safe, healthy and happy new year!

Thoughtfully,
Kristin

Food Allergies: Anxiety, Gratitude & Belonging

So often we worry about whether our food allergic kiddos feel like they belong. We never want them to have that feeling…that they’re the ‘odd man out’ or like one of the segments from Sesame Street’s ‘One of These Things is Not Like the Other.’ As I’ve grown in my comfortableness with my son’s food allergy diagnosis, I too have evolved in what I find to be an unending truth.

The truth is, we don’t want our children to feel like they don’t belong, always different in this crazy world that socializes, celebrates, rewards, incentivizes and crafts with food. Whew! That was a long list. But let’s be honest, at one time or another in our childhood or even as an adult we’ve felt like the: ’odd man out’, ‘third wheel’, however you want to label it. Feeling different is really a rite of passage, whether you have food allergies or not. I believe these types of situations help us form our being. I know this now because I’m an adult though…I now have the ability to know and understand that ‘now’ isn’t forever and that as we age and grow so does our resilience, what we stand for, how we come to formulate our morals and values, how we determine who our ‘true’ friends are, not to mention just plain get more comfortable in our own skin, etc. Don’t get me wrong, I will still advocate hard for inclusion of food allergic children, but my new theory will help to manage feelings about it better.

So here’s my theory:

I think that focusing our lives and the lives of our children on gratitude and appreciation for what we have will not only decrease our and their anxiety but intensify everyone’s feeling of belonging.

"One thing that has helped me immensely in handling life's challenges, is letting go of how I thought it was going to be." ~ Kristin Beltaos

“One thing that has helped me immensely in handling life’s challenges, is letting go of how I thought it was going to be.” ~ Kristin Beltaos

How could you not have a strong feeling of belonging when all you see is sheer abundance?

Truth be told, I’ve always told my boys that it’s not about what material things we have in life but about the experiences that we have, the people that we spend time with, what we give of ourselves to others and how we impact the lives of the people we interact with — whether that’s the cashier at the grocery store or your family and friends. We need to not only think about our gratitude, but convey it through our gestures and contact!

How can you start this? Well, get a large canning jar and have each family member write down what they are thankful for and place it in the jar each day, every other, whatever feels natural. Then on the ‘difficult’ days pull from it for reminders of what we are grateful for to help deflect from a negative situation. Another option is to have each person share at the dinner table what they were thankful for about each day. No matter how you decide to establish this new family ritual, realize that the jar may prove to be of tangible help when a rainy day heads your way, being able to pull from it and review past joys.

By focusing our lives on the expression of gratitude it will make it difficult to slip into the dangerous ‘grass is always greener’ mentality, wishing things could be different in our lives. Truly accepting life the way it is handed to you and living within that rather than ‘how things were suppose to be’ permits us to teach compassion to ourselves and others and accept our life’s ‘lumps’ for what they truly are…something to be grateful for.

I gave you a few of my thoughts, won’t you leave a comment and share with me one of yours?