Episode 13: “Shocked Out Of My Socks!” Part 2: My Mum’s Experiences On How To Get Other People To Take Anaphylaxis Seriously

Episode 13: “Shocked Out Of My Socks!” Part 2: My Mum’s Experiences On How To Get Other People To Take Anaphylaxis Seriously

Today’s Guest:

My Mum, Suzie

 

What You’ll Learn:

Mum and I chat about starting primary school with a severe nut allergy, how we made it a normal part of our lives and how we educated ourselves and other people.

  • We talk about the safe guards my parent went through to keep me safe outside of home
  • Mum tells me how she approached my primary and secondary schools about my allergy
  • We chat about the importance of normality in raising an allergy child
  • We talk about going out to eat at restaurants
  • The importance of teaching me how to speak up for myself
  • We chat about how we got my family to take my allergy seriously and the strategies she used to make it so
  • Mum talks about her advice for new parents and what they mean
  • What if you don’t feel confident as a parent to deal with this? Mum says get in touch with an allergy organisation, find other parents in the same situation

Advice for new parents:

  1. Take time to think and plan
  2. Follow your instincts
  3. Fight for your child’s life as and how you think you need to
”Episode Click To Tweet was a constant process of education with every new scenario that food was involved in.” username=”eatallergysafe”]

 

THANK YOU FOR LISTENING

To get more EAS content sent directly to your device as they become available, you can subscribe on iTunes, Google Play or Stitcher!

One of our little goals we would love to achieve for is to get into the iTunes “New & Noteworthy” Section, it means we get free front page advertising on iTunes, how great for allergy awareness! But we can’t do it without you. Please subscribe, rate and review on iTunes so that the people at Apple will take notice of our podcast

And lastly, if you have any questions, thoughts, or guests you want to see on the show, please contact me via the contact page.

Episode 12: Shocked Out of My Socks! Part 1: How My Mum Learned About Anaphylaxis Before the Internet

Episode 12: Shocked Out of My Socks! Part 1: How My Mum Learned About Anaphylaxis Before the Internet

Today’s Guest:

My mum, Suzie Modak

 

What You’ll Learn:

Merry Christmas & Happy New Year! Today I will be talking to an allergy mum, but I will be chatting with my mum. You’ll be hearing about our allergy journey and what it was like to raise a child with anaphylaxis to tree nuts and peanuts when the internet was in it’s infancy. We chatted for quite a while, so this is Part 1! 🙂

  • We talk about how we discovered my allergy, unfortunately through error!
  • Mum shares how she started educating others about my allergy
  • She talks me through her “Sleeping Beauty Theory” – (you may have heard me mention this before in interviews with Emma Amoscato and Donna Patterson.)
  • We chat about how she coped with discovering I had a life threatening allergy
  • Mum shares her approach to telling other people about my allergy
Episode 12: A child HAS to own their allergy because otherwise there has to be someone always around constantly looking over their shoulder and thats no way to live. Click To Tweet

THANK YOU FOR LISTENING

To get more EAS content sent directly to your device as they become available, you can subscribe on iTunes, Google Play or Stitcher!

One of our little goals we would love to achieve for is to get into the iTunes “New & Noteworthy” Section, it means we get free front page advertising on iTunes, how great for allergy awareness! But we can’t do it without you. Please subscribe, rate and review on iTunes so that the people at Apple will take notice of our podcast

And lastly, if you have any questions, thoughts, or guests you want to see on the show, please contact me via the contact page.

It’s Nuts!: What Doesn’t Kill You, Makes You Stronger

It’s Nuts!: What Doesn’t Kill You, Makes You Stronger

In your life certain events are more important than others. Going to secondary school, going to university, your first ‘proper’ job and buying a house for example. Your parents realise this and start preparing you from an early age, teaching you how to: feed yourself, do laundry, manage your money etc.

Whilst important, all of the above are not life threatening.

However, for an allergy sufferer, we have a potentially deadly addition to our lives.

I have personal experience of this. January 3, 2007 was the day my parents preparation was tested to it’s limits. It was completely unexpected and as horrendous as we had imagined. It changed my life forever .

From left to right: My brother, my Mum and me (Nina), I think Dad took this picture, while on a trip to Goa to visit the seaside.

From left to right: My brother, my Mum and me (Nina), I think Dad took this picture, while on a trip to Goa to visit the seaside.

——Let’s Start At The Beginning——

You see, I have anaphylaxis to tree and ground nuts. This means I have a potentially fatal allergy. This means I have to carry a medical kit with me at all times: adrenaline pens, inhalers and anti-histamines. My parents found out in the worst possible way too, I was too skinny as a baby as I was allergic to cow’s milk, so I was given a teeny weeny bit of peanut butter, within a few minutes I was covered in hives. There was no internet, no mobile phones. I was fine, but my parents were freaked out. Fast forward 3 years and I was diagnosed with a anaphylaxis to tree nuts and peanuts and have been carrying adrenaline pens ever since.

 

——Back To The Story——

Firstly, can I just say that traditional home-cooked Indian food is AMAZING and completely different to what you get in restaurants! The aromas! I wish I could capture them and attach it to this post for you! (I will be writing up some allergy free Indian recipes for you! Watch this space!)

Indian culture dictates that guests are extremely well looked after, it’s the same as in Spain: mi casa e su casa. It is all about hospitality but.… and it’s a big but… allergies are almost unheard of, especially among my grandparent’s generation.

It was coming to the end of a 4 week family trip in India. It had been a great  trip, bringing relatives from England together with their extended family (Indians LOVE extended family connections!). It was a huge sprawling affair with lots of people to meet, being continuously fed, sight seeing and a spot of shopping. Thank goodness I was 16…had I been younger there would have been a serious amount of cheek pulling!

 

At the sides of the roads there were always fresh coconuts on sale. Rather than a service station, we would take a break and have fresh coconut water and then eat the coconut flesh from the insides. (A man with a very large knife would slice open the coconut!)

At the sides of the roads there were always fresh coconuts on sale. Rather than a service station, we would take a break and have fresh coconut water and then eat the coconut flesh from the insides. (A man with a very large knife would slice open the coconut!)

 

The last social call we made was to my Grandparent’s friends of over 50 years! More than triple my then age! A big lunch had been planned to celebrate more tenuous family extensions. It seems only a slight excuse is needed for a celebration in India! (A cultural characteristic I wholeheartedly love to indulge in!)

In preparation for this last family lunch, my parents and grandmother had been communicating with the host about my needs. She had been made aware of my allergy and there could be absolutely no nuts in the food.

We thought after multiple communications that this was understood.

Ooty india eat allergy safe

This was the view from the road while on a trip to Ooty, a hill station in South India.

After all we had managed 4 weeks of eating at out at restaurants, travelling, and being fed by other family members. There were a couple close  calls at restaurants but we would double or triple check with the staff. Those dishes that actually did nuts would be sent down the other end of the table and kept away from me, but otherwise with no incident.

The snacks before dinner were a traditional Indian snack which contained nuts. There were crisps next to the nuts. This was obviously a no-go area for me, so my Mum asked that I could have my own un-opened bag which was happily provided.

I was 16 and understood my allergy as best I could. I was wary of cross-contamination and I watched and listened checking for myself. However I think during this time I left a lot of the allergy checking to my parents. I was in a new country and at a new person’s house. Looking back, I feel that if I had had a more active role in my allergy care, asking questions and being more vocal, maybe the following incident would have been avoided…

When A Little Bit Is Too Much…

When lunch was ready all the dishes were laid out on the table. I was to sit next to my Grandfather at one end of the table. As I walked to my seat, my Mum and I noticed there were cashew nuts on top of the rice.

Errr…hang on a minute, we said no nuts…

Mum pointed this out.

Ok, I wasn’t going to have the rice, no problem.

My mum asked, “are there any other nuts anywhere else in the food?”

“No, no, there is nothing” the host said.

Ok then. Food time.

At this point in my life, the last major reaction I had had was when I was 9 months old. So I didn’t really have any idea what to look out for apart from what I had been told could happen.

I was served a plate of food with a taste of each of the dishes (there were lots to try!) and I started to eat. The first mouthful was delicious, the second divine! It was all SO GOOD!

Hmm that’s strange, am I getting ill? I feel like there is something at the the back of my throat, I can’t clear it.

My third mouthful continued to entice my palette.

As I finished chewing my fifth mouthful of food my Grandfather said “Nina, don’t eat the salad it has nuts.”

Too late.

(The reason he could tell there were ground peanuts in the salad is because he doesn’t like it when it gets under his dentures.)

My Severe Allergic Reaction…

My lips began to swell.

My panic sent me into action stations: I needed to get this poison out of my body.

I sat on the cold tiled bathroom floor, face over the toilet, my finger as far down my throat as I could get it.  I just remember thinking “If I can get this out of my body I would be ok, right?!”

I could feel my stomach screaming at me: “What have you put inside me?! Get it out! Get it out!”

My Mum held my hair back as I desperately tried to purge myself. But I couldn’t. I couldn’t make myself throw up. I started to freak out.

My stomach continued to scream. It was the worst stomach pain I have ever experienced. (Worse than any period pain – which once I have almost fainted from, had to go home from school and be dosed up on extremely strong painkillers for.)

But I had to get it together. I had to make decisions: first, piriton; second, do I use my Epipen?

My Mum sat with me as I took two piriton tablets. Hopefully that would help slow things down.

From the information I knew at the time, my Epipen was to be used if my throat started to close up. My throat was not closing up, I could still breathe. But I was scared.

I don’t like needles, but more than that, by using an adrenaline pen it seemed to confirm the situation was at its worst. That the worst could happen. That’s terrifying.

Humans are strange: with #anaphylaxis, ironically you are scared to use an adrenaline pen because it confirms the fact that your life needs saving. Click To Tweet

Ironically, you are scared to use this life saving medicine because it confirms the fact that your life needs saving. Maybe that’s just for the first time, what do you think?

I was feeling very nauseous. I wanted to throw up but I couldn’t make myself throw up.

I ignored everyone but my Mum and Dad. Anyone who was not going to do what I needed was ignored, they were irrelevant. My life is more important than other people’s feelings.

Did I want to go to hospital? Yes.

As we drove to the hospital I had a plastic bag on my lap. The bumps on the road made me feel really sick. I felt the nausea rising and my strength waning.

When we got to the hospital, I had to be carried in. One arm over my Mum, the other over the lady who had poisoned me. From my Mum’s view, she might as well experience what she’d done…

From this point on, time didn’t have value. I don’t know if it was hours or minutes I was in the hospital.

I was taken straight through and laid down on a bed. The doctors and nurses began attending to me. I felt weak. My stomach was still screaming. I didn’t have the strength to sit up.

It was probably quite obvious, I was very sick. I needed medicine and fast.

The nurse was trying to get a canula into my right hand, I turned away (I really hate needles). My Mum stood by my bedside as the nurse poked and prodded. It hurt, I didn’t like it. She kept trying. Why was it taking so long?!

She couldn’t get the canula in, they had to try a different place.

Sharp pokes again and again. Rather than the top of my hand, this time on the inside of my wrist, she was trying to get into the vein that runs up from your thumb.

Pierce, pierce, pierce.

Finally the canula was in, the sharp pain could stop.

But then there came a new sensation. A ferocious burning, forcing its way up my arm. Then again, like a molten fire. And a third time.

It was the medicine. If ever the phrase “coursing through my veins” had meaning, it was now. This fiery medicine was coursing through my veins.

Minutes or hours passed, I don’t know.

Worried people stood by my bed. I didn’t acknowledge them. I had no energy to make them feel better, to reassure them that I would be ok. To be quiet honest, I couldn’t have cared less at this point.

Then suddenly, I sat up. I could feel something welling up inside me. I was about to burst. Where was the plastic bag that I had had in the car?!

My eyes searched for it, where was it?!

This force inside of me was getting stronger.

It was at the end of the bed.

I could feel it pushing itself up inside of me, stronger and stronger. My body was tensing getting ready, and I could barely contain it.

I grabbed the bag.

I was like a dragon. A fiery force propelling its way up from my stomach, through my throat and out. It was like a river flowing and it didn’t want to stop. It was outside of my control.

My stomach kept pushing, my body doubled over, my throat began to burn. And still this fiery river propelled out.

When it was over, I fell back. Exhausted. I just lay there, semi-conscious. The burning in my stomach lessoned.

I just lay there. I didn’t panic, I didn’t think of life, or death. I just didn’t have the energy.

Looking Back…

Looking back, the reaction was short. But the ramifications were not. From ingesting the peanuts to waking up the next morning, I threw up 4-5 times.

The reaction itself was not only stressful for my parents but it also happened the day before we were due to fly back to England. So as you can imagine, caring for their daughter as well as packing was not an easy task.

When we got back to England, I do remember I was famished. I happily tucked into the pizza we had ordered. The next day on the other hand, was a different story.

I didn’t feel well. I couldn’t eat. I felt exhausted. I tried to eat some bread and cheese but the cheese made me feel really sick. Milk and yoghurt made me feel sick. Meat made me feel sick.

For the next two weeks, all I could stomach was bread and fruit. I was also due to go back to school, but wasn’t strong enough or well enough until a week later.

By the middle of January I could just about eat milk, yoghurt and cheese. But I still couldn’t eat meat. It continued to make me feel sick. It took until the end of January for me to be eating properly again.

By January, even though I could eat properly, I was still scared of food. If anything had a warning on it I wouldn’t touch it. Even foods that seemed safe I would still be scared.

Every time I put food in my mouth, the first 5 minutes would be terrifying. I would just wait for a reaction to start, for the whole process to replay itself. Lips swelling, stomach screaming, exhaustion, and medicine coursing up my veins…

What Doesn’t Kill You Makes You Stronger

It’s funny, you hear this phrase quite a lot but very few times can it be literally and figuratively true.

Physically, it took me 2 years to recover (because I caught every virus that went round school, including contracting Mononucleosis which took me off school for over a month), but mentally it forced me to take a different approach.

Being scared of food lasts for a relatively short amount of time because you get hungry. But, you have a choice, let the fear rule you or you rule the fear.

With allergies you have a choice: let the fear rule you or you rule the fear. What will you choose? Click To Tweet

I decided that I wasn’t going to be ruled by fear. I had to start taking complete charge of my well being.

I had to take charge of my allergy and so began a new journey in my life.

This reaction, although really quite unpleasant made it clear that other peoples feelings are never as important as my life. It showed me I absolutely had to be able to look after myself by knowing how to cook, being able to make other people understand that I am serious when I say “no nuts,” but also that getting worked up over your allergy is no way to live. I realised that how I live is my responsibility and my choice.

I was not going to let my allergy rule me, I choose to make my world safe for me and my allergy.

What will you choose?

Article Update

Since writing this article I have had a lot of people get in touch with me and want to know more about how I learn about managing my allergy and also how they can teach the children. You all made me realise I should put all the information in one place, in video, audio and written format.

So, I have been doing just that and putting together a Parent’s Guide to Allergies. It will have information on travelling, telling other people, making food fun with allergies and more!

While I’m putting this together, I am now available for 1-to-1 mentoring sessions for allergy parents and sufferers. If you feel like it’s all a bit too much and you don’t feel confident managing your allergy, I’m here to support you and coach your through. Check out my mentoring page for more information, or email me to book.

 

Live Confidently With Anaphylaxis: 6 Tips from a Grown-Up Allergy Kid

Live Confidently With Anaphylaxis: 6 Tips from a Grown-Up Allergy Kid

Hi, my name’s Nina and I’m a grown-up allergy kid. (Make Sure you check out my video below!) 

What’s a grownup allergy kid? Well it’s an allergy kid whose grown into an adult, and that’s me. Had my allergy since before I can remember and it’s not going anywhere.

So let’s tell you my allergy kid facts:

  • I have anaphylaxis to tree and groundnuts (peanuts)
  • I have eczema and asthma as well
  • I have a medical kit: adrenaline pens, inhalers, and anti-histamines.

And here are my grown up facts:

  • I’m in my mid-20s
  • I started my own business, Eat Allergy Safe, to help other children, families and allergy sufferers on their journey
  • I LOVE food! Especially chocolate biscuits.
  • I love to dance (ballet, ballroom and latin)

 

An allergy is an auto-immune response the body has something it believes is the foreign invader. The most serious allergic reaction can lead to anaphylaxis. With anaphylaxis there is a risk that your airwaves can swell so badly that they begin to close. If this happens you begin to suffocate and without medical attention, your throat will continue to close…

That’s why I carry a medical kit with me at all times; it has my life-saving medicine in it. But why life-saving medicine? It sounds a bit drastic doesn’t it? Well my medicine is about preventing my death. Much like wearing your seatbelt in the car it doesn’t stop an accident but it keeps you safer if there is one, my medicine is like my seatbelt.

Over my lifetime I’ve had many people think it strange that a nut could kill someone. It’s so small and most people can eat them. That’s the thing about an allergy, something harmless to one person could be seriously damaging or fatal to another.

From an early age my parents taught me how to manage my allergy. The tools I learned taught me how to navigate the world safely and live confidently with anaphylaxis. Life is there to be lived and it’s too short to live in fear of your allergy.

 

Life is there to be lived. It’s too short to live in fear of your allergy. Click To Tweet

 

What Helps Me Live Confidently with Anaphylaxis?

To live the life I want, I live by a simple set of rules to keep me allergy safe.

My allergy rules are simple and very pragmatic. The aim is to keep me safe and free from allergic reactions. Here are my rules:

6. Always have my medical kit with me

You never know when you could have an allergic reaction so you need to be prepared. My allergy medical kit is there to preventing a worst-case scenario (death) and get me to hospital so that I can receive full medical attention.

5. Check the ingredients and ingredients labels myself

The simple way to stay allergy safe and not have a reaction is to stay away from known allergens. Every allergy sufferer should get into the habit of checking ingredients labels and asking for ingredients information for unpackaged foods. This is a really easy habit. Don’t let other people make decisions about what goes into your body because they don’t know your allergy like you do.

4. Don’t eat anything I’m unsure of

Better to be safe than sorry. The food might look yummy might smell good if you can’t check and make sure that safe don’t eat it. If anyone says to you “oh, I’m sure it’ll be fine,” that is not a definite yes it is safe. You need to check the food is safe for you if it’s not don’t eat it. Don’t play Russian Roulette with your life; don’t fall to peer pressure because it could be fatal for you.

3. Educate others

As an allergy sufferer you will need to involve others in your allergy management plan. This can include your family, boyfriend, girlfriend, friends, colleagues etc. Most people don’t know much about allergies or allergy management. If they’re willing to listen, educate. Tell them about your allergy what is what you need to avoid and how they can help you.

2. I can always say “no”

In the case of staying allergy safe, having the confidence and the knowledge that you can say “no” is incredibly important. The majority of people are ignorant of allergies and unaware of all the ways cross contamination can happen. This is not their fault, they don’t have any practice. It is up to you the allergy sufferer to keep yourself safe, sometimes that may mean politely but firmly saying “No. Thank you.”

1. I am in charge of my allergy and responsible for my well-being

My allergy is mine and no one else’s. I am in charge of my safety and my well-being. I know that I am my best chance of staying safe and the only way I am able to make this so, is to believe it and own it. I am confident that I can take the necessary steps to ensure I stay allergy safe such as checking labels, educating others, carrying my medical kit, and always knowing I can say “no”.

Managing allergies is simple it's just about having the confidence to do it Click To Tweet

Managing allergies is simple it’s just about having the confidence to do it. It’s about managing your circumstances to your advantage so that you can join in with all life has to offer, allergen free.

Like most things practice makes perfect. Wherever you are on your allergy journey you can always keep learning. Your life is what you make it, and allergies don’t have to stop you in any way.

How do you live confidently with your allergy? Share your top tips by leaving a comment below, I’d love to hear about your experiences 🙂

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It’s not quite winter anymore, but I wanted to post this great article anyway. After our podcast chat (Episode 4 & Episode 5) Ali White from allergymums.co.uk was very kind to write up her tops tips for dealing with severe eczema and some of the tips and...

Sign up now because…ENDS Soon! – FREE Dairy Free Chocolate e-Guide pdf with 2 bonus recipes

Sign up now because…ENDS Soon! – FREE Dairy Free Chocolate e-Guide pdf with 2 bonus recipes

Love chocolate cake but allergic to dairy, eggs, nuts, gluten and pretty much the top 14 allergens? Learn how to bake your cake and eat it too with our FREE e-guide.

Want to have a sneak peak inside….? Oh go on then….

[huge_it_slider id=”2″]

Packed full of hints, tips, explanations and methods. Nina takes you through the ABCs of working with allergy safe chocolate.

There are even a couple recipes included for you to practice with.

This pdf is currently FREE when you sign up to our mailing list, BUT it cannot last forever. This offer will finish on October 1st 2016!!

This e-guide will then no longer be available.


So get your hands on a FREE copy now before it’s too late!

Here’s how…

Are you ready for your dairy free chocolate adventure? We’re excited for you to join us!

Sign up now: Learn how to work with dairy free and vegan chocolate in our FREE Eat Allergy Safe Essential Guide! 10+ pages and includes TWO recipes!

Sign up now: Learn how to work with dairy free and vegan chocolate in our FREE Eat Allergy Safe Essential Guide! 10+ pages and includes TWO recipes!

To get your FREE copy, all you need to so is sign up to our newsletter below.

Sign me up!

[BFTWP]

We then send you an email with your PDF. Simples.

(P.S. You’ll also be sent 2 BONUS dairy free chocolate recipes too!)

*Free pdf only available until October 1st 2016.

Chocolate e-guide back cover

What’s your BIGGEST Allergy Challenge? – 100 Day Research Project

What’s your BIGGEST Allergy Challenge? – 100 Day Research Project

Thinking about allergy challenges…our 100 day research project.

Nina addressing allergy challenges Eat Allergy Safe at the Allergy and Free From Show Liverpool

Eat Allergy Safe at the Allergy and Free From Show North 2015

Nina here (founder of Eat Allergy Safe). I have been thinking a lot about the future of Eat Allergy Safe. I believe it should be a company dedicated to serving the needs of allergy sufferers.

Over the next 100 days, I have set myself the mission to find out how we can start serving you better and addressing your allergy challenges.

Please help me in my research by reading this short post.

There are a couple questions at the end (takes less than 2 minutes to answer!)

Thank you!

Nina


 

Do you or a family member have allergies/intolerances/coeliac disease/special dietary restrictions?

I do. I have anaphylaxis to tree nuts and peanuts, and I am gluten intolerant. My nut allergy was discovered when I was 9 months old when I had a reaction to peanut butter – pretty scary for my Mum.

Living with anaphylaxis has many challenges day to day. Not to mention big problems when I’ve had a reaction.

Over my life, I have learned how to deal with them and adapt. My parents protected me as a child,  raised me and taught me how to look after myself and own my allergy. Helping others learn about their allergies is one of my passions.

Sadly, allergies are on the rise. For new allergy sufferers,  many are being diagnosed with multiple extreme allergies and intolerances. Some of these can be quite surprising and shocking. How do you deal with these multiple allergies and the difficulties that arise?

allergy challenge 100 day research project nina modak eat allergy safe

100 Days Research Project

We’re doing research into the topic: What allergy challenges do YOU face and what solutions can we find?

Why 100 days? Because in truth we need a deadline to work to. We want to be able to present our findings to you, and without a deadline, we won’t know when to start showing you what we’ve found.

Want updates? Every 10 days I will be sending out an email with how we’re getting on, the challenges we’re facing on our journey and how we’re overcoming them. If you would like to receive updates, please sign up to our newsletter below.

 

Allergies don’t have cures yet, that’s why we rely on each other, the allergy community. Most wisdom has come through trial and error and sharing stories.

 

With YOUR help, myself and the Eat Allergy Safe  team are going to start a project addressing your biggest allergy challenges. Please help us start our 100 day research project; there is just ONE question I need you to answer…

 

What is your BIGGEST hair pulling frustration and challenge you have living with allergies?

 

 

Thank you for stopping by! Have you go anything you’d like to share? Leave a note in the comments section below