Happy Anniversary?

Well, today is the day that fills me with awful memories but such hope for the future. Four years ago today my youngest ate walnuts. Then our lives changed forever. She ate them, she ate them at home. Thank goodness. At least she wasn't at school, the mall, in the car, it could have been worse. She was at home when she ate them, surrounded by family that loves her. She ate them. She turned red. She became lethargic and zoned out. She began to cough and wheeze like I had never heard before. I had no idea what was going on. I gave her benadryl and called the Dr. We went in and they gave her breathing treatments and oral steroids. We went home with a prescription for more steroids. We then saw the allergist. We had now entered the world of epi pens and life threatening food allergies. We learned a big word that day. Anaphylaxis. Which she can now literally spell forwards and backwards (that impresses me).
Four years has gone by in a scary blink of an eye. But, it's been for years. Four years of vigilance in keeping her safe. She has learned a lot in four years. She is so good at protecting herself. I am so proud.
Tomorrow she has a check up with the allergist and then off for the annual blood draw. I hate this for her. She does get to pick the restaurant where we will eat out tomorrow night as a treat. Then off for frozen yogurt. Hope that helps.
Dreading tomorrow.......but I have hope in my heart that her numbers will drop. Fingers crossed and praying hard for good news.

I am humbled

My intent was to take the day off from the computer. I have been out all day with the family. Shopping. The kids tried on their spring clothes (just in case spring ever arrives). Those kids have grown, so off to the mall we went. Luckily, we found some stuff on sale.
Anyway, I checked in on my phone and I found something too exciting not to share! I have been nominated for two blogging awards!
A huge thank you to http://simplylifestuff.com/ for nominating me. I am truly honored and thrilled!

Since I have been nominated I need to throw out 7 things about myself.
1.My original college major was communications
2.I'm an only child
3.I taught for 15 years and I had one student with food allergies
4.Growing up I had one friend with food allergies
5.I'm from New Jersey
6.I met my husband when I was 19 years old
7.I love chocolate

Well, now I need to pass on the blog love. These three blogs inspire me everyday.
http://noraroseyusko.com/
http://www.stephlj.com/
http://foodallergiesrock.com/

Thanks again and enjoy!

cutting the cord

So, my youngest is off on a field trip today. She's going with the whole grade to a local high school for a concert. She was up and dressed before my alarm even went off! She's so excited. No clue that behind the scenes plans were made for her safety and I am here trying not to pass out. I trust her teacher 100%. She has two epi pens with her and benadryl.  There is no food involved in this trip at all. They will only be gone about 2 1/2 hours. Then how come I feel as if she has gone halfway around the world? I know that all will be fine....
I'm going to pass the time by giving myself some time off. My wonderful husband bought me the movie version of Les Miserables. Can't wait to compare it to the amazing play that we saw a few months ago. So, in other words, it will be a good excuse to cry.

It will save lives

There is very important legislation that needs to be passed on the state and hopefully, one day, at the federal level. In short it's the "stock epi law". This law would make it so that schools could have epi pens on hand in case someone without a diagnosed allergy had a reaction. Epi saves lives. This law has been passed in other states and it has been put to use and it has worked and saved lives.

Here is the information on how you can help get this law passed on a federal level.
http://www.foodallergy.org/advocacy/school-access-to-epinephrine

Here is the information on how to help in North Carolina. The deadline is Thursday.

URGENT NEED FOR CALLS AND EMAILS TO SENATOR BROCK: 919-715-0690
Andrew.Brock@ncleg.net
We just found out the deadline for the non-specific epinephrine legislation is THIS THURSDAY for it to be filed. This office has not done so, although we were told it was in motion. PLEASE CALL THEM IMMEDIATELY, today, only takes a minute to help this worthy, life saving cause. Thanks so much!


There are defibrillators at malls, schools, office buildings and so on. Epi pens should be right there next to them. I see it as common sense and life saving. What about you?

Just try it.....please

I'm not a cook. I don't find it fun, never did. I like it less now with food allergies. I spent 6 hours in the kitchen on Sunday to make food for Passover. Not fun. Exhausting actually. It was all worth it though at the Seder last night where the meal was well received by the family. All but one that is, the youngest of my picky children, yes the one with food allergies. The one who I always worry about, the one who I keep in mind with every meal that I make. Yes, the one that I have to rearrange the charoset for. No nuts and apples here, it's remade with pears and raisins. She wouldn't even try it! Same as last year. No interest.
Is your child picky? Mine are. Both of them. I know they get it from me but I at least would try stuff as a child. Sometimes they won't even try. My youngest ate mashed potatoes and cranberry sauce last nigh. Oh, and one bite of turkey.
Any tricks for getting the picky eaters to eat?

inspired

As I take a break from Passover prep, I found something that inspired me. It always amazes me that most of my inspiration comes from food allergic children. Their strength and courage will always stay with me.
A very talented, food allergic, young man named Reed Pake has released two songs. One is about his life with food allergies. He is amazing, check it out!
https://itunes.apple.com/us/album/nothing-less-nothing-more/id624140886




Happy Passover to all those that celebrate!

He's a rock star!

A few years ago we learned about an amazing man. He is full of talent and his name is Kyle Dine. He is a singer and he sings about food allergies. We had the honor of seeing him in concert too. Amazing! He empowered those children with his lyrics and enthusiasm. He empowers me, the mom of a child with food allergies. He gives me hope that my daughter can lead a fruitful, creative, wonderful life, even with food allergies.

Please check out his website. He even does school performances, maybe your school can have him put on a show....

http://www.kyledine.com/

I may not post for the next few days. Lots of Passover cleaning, shopping, and cooking to do! For all that celebrate, I hope you have a wonderful holiday.

When you were diagnosed...

When you or your child were diagnosed with food allergies (or any condition) for that matter, did you get enough information? Were you sent home with epi pens and a pamphlet (for allergies) and nothing else? Were you given tons and information and you felt empowered or were you just as lost and scared as ever?
If you could go back in time to the day of the diagnosis, what would you like to know? What information would you want to see at the Dr.'s office?
Do you think that it's the responsibility of the Dr.'s office to give you tons of information or should you do research on your own? Or, should it be a combination of both?

I certainly threw a lot of questions at you today......

Here's what I think. A lot of information being thrown at a person at the time of a serious diagnosis can be overwhelming. However, knowledge is power. What scares me is how often I hear someone say, the Dr. sent me home with epi pens and no information. That's when you need to step up, do your own research and find a Dr. that will be supportive, understanding and empowering.

Off topic time-

It's freezing here today by the way, where is Spring? Of course, Spring will just bring sneezy times. I can't win...... :)

Holidays and allergies around the world

Passover is around the corner. Yes, another holiday. There are many in an interfaith household. Passover is one of my favorites. It's very symbolic, the kids can be involved, there's wine....  :)
One of my favorite parts is the Charoset on the Seder plate. It's a wonderful concoction made from apples and walnuts traditionally. Wait. What? Apples and walnuts. That's right, my favorite goes right down the drain. Apples and walnuts are not a part of our house.

Here is the traditional recipe
http://www.epicurious.com/recipes/food/views/Traditional-Apple-Walnut-Charoset-234298

I modify it by leaving out the walnuts and filling it in with raisins and I use pears instead of apples. Not the same but not awful.

I'm not a cook by any means so if you have any thoughts on how else I can modify it please let me know.

Through Blogger I can see where in the world people are that are reading the blog. Besides the United States I have had readers from Germany, England, Australia, France, and Portugal! That's so exciting to me! Thank you all! It also makes me stop and think about food allergies in other countries. How prevalent are they? How are they diagnosed? How are they handled in schools etc? If you are reading this from outside the United States, I would love to hear how food allergies are handled in your country.
Thanks!

Publishing and reflection.

 I wrote the book, I sent it off and I got one quick rejection letter. Ok. Now I sit and wait. While I am waiting do I make the leap and self publish? I have done my search and I know that there are plenty of ways to self publish. Is that the smart way to go? I have no idea what I am doing.  Any thoughts? Any published authors out there, I would love some advice?

A little self reflection-my posts so far are pretty depressing. :(
I love my life. I have a great husband and two great girls. Both kids are happy, bright, and involved. They love dance, singing, scouts, religion classes and so on. Allergies are just all consuming at times....and they scare the bleep out of me.

It's too many

Two allergy deaths in a week. It's two too many. What will it take to find a cure, get better laws passed to keep these kids (and adults) safe?  What will it take?
You know when there is an unsafe intersection and there is accident after accident? I think it makes sense to put in a light. Isn't there some unwritten rule that there has to be so many deaths and then a light will be put in. That, to me, is the most ridiculous idea. Ever. I think after a few accidents the intersection should be investigated and then a light put in. What's the point of waiting for deaths?
Is this what it's going to take to get more money thrown at allergy research. Is two deaths enough? Four deaths? How many?

I pray for the families-
http://www.turnto10.com/story/21584682/bryant-student-dies-after-eating-cookie

http://www.thespec.com/news/local/article/903955--rainbow-memorial-wanted-after-mysterious-death-of-12-year-old-stoney-creek-girl

Pass the tissues.....

Since I am very organized (or anal and ocd) I have a tidy list of topics that I would like to cover here. Today that list was derailed by desensitization. The Today show covered work being done in California in regards to food allergies. There is a series of 3 videos.
http://www.today.com/video/today/51152363#51152363

I cried from beginning to end. This girl broke my heart. Everything that her parents said is what I feel everyday. I am awed by their courage to go through this process. It's parents like them that will help the researchers find a cure. I don't think I will ever be brave enough to have my child go through this. They are heroes to me. Very inspirational. If you have the time please watch and feel free to share.
This gives me hope......

It started how?

The rates of food allergies is skyrocketing. Why? Who knows? Nobody knows yet. I feel like I am running in circles with the amount of articles that have come out lately on the cause.

We started our babies too early on food.
We started our babies too late on food.
We waited to feed our babies highly allergenic foods.
We started our babies too early on highly allergenic foods.
Our society is too clean.
Our food is too genetically modified.
It's genetic.
We breastfed.
We didn't breastfeed.
Did I miss anything?

Literally enough to make your head spin. So many of these articles make it seem as if the parent is to blame. We didn't do anything to make our child have life threatening food allergies. I have two children. I have raised them in exactly the same manner. One has allergies, the other does not. What explains that? Parents have enough weight on their shoulders without taking on the blame of food allergies too. We didn't cause it. What did?

It's not just allergies

The phone rings. You look at the caller i.d. Is it a telemarketer, a friend, or is it the school? When the kids are in school and the phone rings my heart skips a beat. If it's the school, I age about 10 years. So, I should be about 130 years old by now.
The nurse at my youngest child's school knows to say the following all in one breath. "Hi, it's the nurse and everything is fine" That's helps me to calm down enough so I can assess what's going on with out passing out.
Most schools these days do not have a full time nurse. This boggles my mind. How can a nurse not be in every school full time? This terrifies me. Not just because of allergies but because of other injuries, serious conditions, and illness. The teachers and staff already have enough on their plates, they shouldn't have to worry about all of these things also.
My oldest called me last week from middle school because she was hurt. Minor injury but enough that she needed to be taken care of. No nurse. I picked her up and took her home to take care of her. Yesterday she got hurt again. Luckily the nurse was there and all was taken care of.
I love the teachers and staff at both schools but in the case of injury or illness, shouldn't it be a trained medical professional that takes care of our kids medical needs? How often is your school nurse actually in the building? You might want to find out........

interesting research

http://www.nytimes.com/2013/03/10/magazine/can-a-radical-new-treatment-save-children-with-severe-allergies.html?pagewanted=all&_r=2&

This is a very interesting read that has been making the rounds. For me it's part sad and part encouraging. It's so hard to read other parents stories about their kids, their kids that nearly died from allergies like mine. It's encouraging also because of the new clinical trials and treatments that parents have enrolled their kids in. It gives me hope, without hope what else do we have? I have to remind myself that one day there will be a cure, there has to be light at the end of the very long tunnel.

On a totally different topic-is anyone else exhausted today? The time change has knocked me out!

letting go

My oldest child is at a huge event this weekend. Meeting new people, having fun, hanging out, learning. It really is a great opportunity for her. I, of course, miss her and I do wonder what she's doing but I know that she is ok. She is off, making decisions for her self, and of course she can eat whatever she wants. Cookies and other junk without mom saying no, paradise!
How do I let my little one do this? How can I let her go to an event like this when she is older? Can I trust that those in charge will keep her safe? I know that they would do their best and they would never let anything happen to her, on purpose. They are not immersed in allergies every day. Do I let her go and pray? Do I send food with her? Will she feel left out? Different? I thought that as she got older it would get easier but I guess it doesn't get easier it just becomes different.
She needs to out grow this......
Do you send your child out to big events with out you? Allergies or no allergies, how do you handle it?

Happy Place

Happy Friday!

First off, thank you for reading! I have been thinking about blogging for a long time and it was very hard for me to make the decision to go for it. I think it's good for me to do (therapy for me). I hope somehow, some day that it helps someone out there. If it does then it's all worth it. So, again I say thanks for reading, sharing the blog, and commenting. It doesn't go unnoticed and it's appreciated.

Last night I went to an amazing meeting of advocates for food allergies. It was so inspiring! So many great ideas and support. It does my heart, brain, and sanity good when I get to spend time with those that get it.

Speaking of happy, when I think of happy and food allergies I think of Disney! (I'm not affiliated with them in anyway) I just love it there. If you have food allergies in your family and you want to vacation, go to Disney! When you make your dinner reservations, let them know that someone in your party has allergies. They will take note and it will be on all of your reservations at every restaurant. When you get to the restaurant tell them again about the allergies and tell your server. At sit down restaurants, either the manager or chef will come to talk to you and he/she will make sure that everything is safe. When you go to a quick service restaurant, ask for the manager. He/she will most likely present you with a whole binder where you can check ingredients. It's so great! Disney is fantastic to begin with but this puts them over the top in our house!

Have a great, safe, and fun weekend everyone!

The state of education

I have two causes that are near and dear to my heart, food allergies and education. I was a teacher for 15 years. I still have a passion for it. I believe that children are precious and amazing, I love spending time with them. I love when they "get" the concept that I am trying to teach them, it's truly exciting to me. Food allergies......hmm....do they get me excited? No! I wish they didn't exist, I wish that they weren't a part of our lives but, they are. Part of being an "advocate" is education. I educate my children about allergies, I educate those that are around my children about allergies. How do we educate the non allergic community? There need to be more programs in schools, Dr.'s offices, hospitals, everywhere really. 1 in every 13 kids has a food allergy. How many in the non allergic community know anything about allergies? How many in the non allergic community know how to use an epi pen? We have come so far but we still have a long way to go.

What are your thoughts? How can we educate those that are not immersed in allergies about allergies?

chin up

When my children try out for something and do not get picked I give them advice. I tell them that if they tried their best that they have nothing to worry about. I tell them that it's better to try than to live with "what ifs". I would hate for them to sit at home and not try something because they think they won't get picked.
So, I'm sitting here taking my own advice today. While in the store grocery shopping today I checked my email on my phone ( I have to stop doing that). What did I see in my email? Rejection! Right there in the middle of the store I felt like I had been punched in the stomach, ouch! That stung. Here is part of the email-

It is obvious you have invested a considerable amount of time and effort into this project. Unfortunately, after careful consideration, we do not feel that we could be successful with your work. Please know that sometimes we must pass on well written, marketable projects simply because they do not suit our lists.

That's rejection letter number one. I have to sit and wait now for the other eight. Fingers crossed that one publisher comes through.

It stinks when we have to take our own advice.....:(

Its a chore........

Grocery shopping. Hate it! Never liked it, no fun at all. It truly is a chore to me, always was. Pick stuff off of shelf, put in cart.  Repeat.  Pay. Groceries into the car, out of the car, put away. Boring!
For nearly four years now grocery shopping has become stressful. Read label, not safe. Read next label, may be safe. Next label, safe! Some companies are awesome and label for everything. I truly appreciate that. I'm not taking any chances, if it says may contain or made in the same facility, I believe them and I put the product back. Companies don't have to label for may contain etc. It's so hard to trust companies. That's where the research starts, website reading, phone call making all to keep her safe. Do you have companies that you trust? How do you find out if food is safe for your family members?
Better labeling laws need to be passed. Companies should have to list everything that is in their product and they should have to label for may contain etc. Spices? Really? What spices? A full complete list, I don't think that's too much to ask for.

Heroes

I love meeting new people, especially in the allergy community. I often meet people that have children with multiple allergies. My daughter is allergic to apples and she in anaphylactic to tree nuts. I know how hard that is to manage at times. Then I meet those that have 3,5,7, 10 foods that they are allergic to. I can't even begin to imagine. What really floors me is when I meet someone and they have multiple children with multiple different allergies. The logistics of balancing that blows my mind. These families are heroes to me. The work that goes into keeping their children safe everyday must be staggering. I applaud them, it puts what we go through into perspective.

support

When you are going through a tough time who do you go to for support? Spouse, friends, parents? If need be do you see a professional or seek out a support group? I fully believe that there is no shame in seeking out support. Sometimes there is no choice. Life is rough, and unfair, and it sends us all situations that nobody can be prepared for. Has this happened to you? Have you been handed something that is hard to deal with? Do you know someone that has?
You can be a great help by just listening and being there for that person. I know that without our local support group....well, I don't know where I would be. Their support, services, programs have helped me through some rough times. They are a shoulder to cry on, they are a wealth of information. They saved my sanity.

A new adventure

It's so exciting when your child finds something new that he/she would like to try,isn't it? My little one has been begging to try golf ( her older sister and dad play). We took her to a sports store today and they let her try some clubs to see how she would do. Well, she hit the ball. Three times! She hit them straight and hit the target. Jaws on the floor. It's so great to see her out,loving life and living it to the fullest.

A million years ago

Before I was a SAHM I was a teacher. Early in my career (which seems like a million years ago), I had a girl in my class that had a peanut allergy. I taught one allergic child in 15 years. What is going on? Why are there so many allergic children now? Well, that's a post for another day. Anyway,this child was sweet, kind, and smart. Her parents came in to talk to me before she joined my class. They let me know that she couldn't eat any food unless they brought it in and they trained me on using epinephrine. They told me about her life and what they have to do to keep her safe. She was so allergic that she could never go on a plane. I listened to all they told me, I absorbed it, but did I really get it? Trust me, I took it seriously. I did not want to be responsible for something happening to her. Did I really get it? I mean, I was in my mid 20's, married, no kids. Did I really understand how serious this was? Probably not. I do now. Maybe having this child in my class was foreshadowing. There's no way that I could have known that this would be my life many years later. I wonder how she is doing now. I hope that she is living a wonderful, happy, and healthy life. Maybe she outgrew her allergy....that's a topic for another day too.
On a side note....it's March! Bye Bye February! I hope spring gets here soon.

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