Things I’d like to change about the allergy community

The definition of community is:  A group of people living in the same place or having a particular characteristic in common. A feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.

When I think of community I think of a group of people with similar journeys who are uplifting and encouraging.  Are you a part of a community? Do your community encourage and uplift you? To be honest I’ve never experienced that in any of the allergy communities that I’ve tried to be a part of.

What I have experienced is seeing people being attacked for asking a question, giving advice, or even because their allergic reaction presented with different symptoms than someone else who claims the same allergy. This isn’t how its supposed to be. We can change this by practicing empathy and respect for each other. We have to try harder to be the example that we expect non-allergic individuals to be.

We can NOT expect our family and our friends to understand and respect our allergies if we can’t respect each other. How can we improve? All it takes is a few of us and we can improve by re-educating ourselves on food allergies and how they will impact each person differently. We need to be inclusive to an allergy that is not our own. We need to embrace each other because although our journeys may be similar they will not play out the same.

In the end no one wants to feel isolated. We aren’t in a competition. We are a group of people who should be on the same team, fighting the same fight against all food allergies together.

#teamallergy

 

Why I chose to homeschool and my advice to you

Why did you choose to homeschool? How did you decide if it was the right choice for your family? Was food allergies a factor in making your decision? These are some of the questions people ask when they find out we are a homeschool family. In this blog I will answer these questions and leave you with some helpful advice. After reading this you will be able to take what you learn here and apply it to your own situation to make a choice that will fit your own family.

  1. Why did we choose to homeschool and how did we decide it was the right choice for us? Before I’d ever gotten married and had children I knew I wanted to homeschool.  After graduating from college and getting married I had a chance to work in both public and private schools. I saw firsthand the pros and cons of sending my child to a school. I felt like there were areas that could be improved and I wanted to try those methods with my own children.
  2. Did food allergies play a part in our final decision? No, but our decision helps keep the girls and my own anxiety in check.
  3. How do you deal with socialization? Our girls are 3 and 5 so its not a huge issue right now, although we do socialize from time to time. We’ve met some amazing people while on fieldtrips and other school outings and have set up several playdates.
  4. How did you decide what curriculum to use? I’ve been told that I’m such a nerd. I really didn’t care for anything I saw so I created my own.
  5. How do your girls feel about being homeschooled? They love learning and for now they can’t seem to get enough.
  6. Do you have any concerns? No. For now this is definitely the right decision for us.
  7. What advice would you give to another family wanting to try homeschooling?
  • Try it! You’ll be surprised at all the fun ways you can introduce learning.
  • Don’t worry so much about the cost of supplies. Your public library may have much of what you need for free.
  • Check out your local child friendly events. You’ll be surprised at all the wonderful people you will meet and it takes care of socialization!
  • Set a schedule that works for you and your child/children. Everyone’s internal clock is different.
  • Don’t worry too much, you’ll be fine. Let your inner creative spirit free! You can totally do this. I believe in you!

The most important things about food allergies that no one tells you

In the moments after testing positive for several different food allergies my mind was flooded with so many different emotions. ( I’d suspected food allergies a few years back, but wasn’t able to get in to see an allergist despite having great health insurance). My allergist walked in, handed me a long list of foods, and told me that I needed to avoid them immediately.

At first I was a little shocked (I didn’t expect to be allergic to so much!) and I’m sure I must have cried a little, but I also felt relieved to finally have some answers. I’d originally made the appointment to beg for testing for my infant daughter.  I was breastfeeding and she was reacting to something in my diet. After just a few minutes I started to pull myself together. I remembered that I’d helped someone else manage their food allergies in the past and felt a little empowered. I’m not an allergy newbie but I was new to managing my own allergies. I wanted to be positive. I’ve got this! I’m sure I have enough knowledge to make it  through this I thought! But wait…Did I really?

My plan was simple, I would be sure to pick up my epi-pen from the pharmacy on the way home, and avoid the food on the list. Easy peasy! How hard could that be? Right? Besides I’d just had a brand new baby, no desire to be sick, and I was so much in love with being a mom! I needed to get this right.

The truth is that I actually wasn’t properly prepared for the journey ahead. Even though I was determined to make it work and I did, there was so much that I had to learn the hard way. I faithfully avoided my allergens as well as my daughter’s without complaint. All processed foods were out. It seemed that at least one of our allergens was listed in the ingredients of familiar foods that I wanted to prepare. I had no idea on what or how to substitute ingredients. I wasn’t even the kitchen type! Our nutritionist didn’t have any advice for us. People stopped inviting us to events because they either didn’t know how to accommodate my allergies or they didn’t have time for all the extra work. And It was a lot of work! I also lost a lot of weight and a lot of friends because of my weight loss, but I didn’t give up! I couldn’t give up! I was determined to fight hard for myself and my child.

If my allergist just would have told me five years ago some of the things that I know now my journey would have felt easier.  Here is what I wish I was told:

  • Find a support group in your area that does meet-ups, even if you don’t think you’ll need it. I promise you’ll be glad you did! If there isn’t one, start one! We can all use someone in our corner who’ll have an idea of what our journey consists of and feels like.
  •   Beware of Biphasic Anaphylaxis and educate those close to you.
  • Allergic reactions present differently in different people. ( Although I knew this, some people don’t) We don’t all react the same to the same allergen.
  • Depending on you and your allergies Oral Allergy Syndrome might effect you.
  • You can always develop a new allergy to something that didn’t cause problems in the past. It can happen at any age. It’s not something that people think about after being diagnosed. I sure didn’t!

I really hope this was helpful to you. And don’t forget about finding that support group! At the end of the day its much easier to conquer something with a team behind you. #foodallergyknowledge

Hello world!

Welcome to my site! I’d like to introduce myself to you. I am a mom and a wife. I have two girls who both have several severe food allergies. Between them and myself we have 27 food allergies and 3 of them are airborne . My husband doesn’t have any allergies that we know of, but he understands how challenging it is to deal with them. Our journey started five years ago after I gave birth. My child was having trouble breathing and was misdiagnosed first as having meningitis, (we knew in our hearts that they were wrong) then as having sleep apnea, ( we didn’t believe that diagnosis either) and we were offered exploratory surgery for our newborn child.

Its been a wild and challenging journey and I’ll tell you the rest of the story soon. I’ll tell you how I knew I had food allergies, how I knew my girls had food allergies, and what we did then to make it.  I will also share with you what we are doing now and how we are making it work for us. I will share with you the products that have been safe for us and where they can be purchased. Five years ago when we started there wasn’t much information available to me and it was hard being thrust into a new lifestyle but we made it work for us.

I would love for you to comment and share the things that are working for you as well. Keep in mind that everyone’s journey will be different and things that worked for one person may not work for the next.

If you have read to this point you are a superstar and I am ecstatic that you are here. I invite you to share my blog in the hopes that it may help someone else with their own journey and their own confidence in dealing with allergies. Thank you so much!

– Carol