Tag Archives: anaphylaxis

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Mark your calendar!

This February 28 through March 1 join me at  the Gluten Free Food Allergy Fest.

I am looking forward to this gathering for several reasons. Connecting with others living with food allergies and intolerances, meeting some of my virtual friends in the fa community in-person (finally!), learning new information, seeing new products, all the typical things.

We’re having a party and you’re invited!

“We’re having a party and you’re invited!” Is this not the best invite to a food allergy/intolerance conference, ever?!  My goodness. we live in the trenches daily and this conference awaits on the horizon like a city on a hill. A great place to talk about victories with our dietary restrictions. Don’t get me wrong, connecting with others and sharing struggles is important, but sometimes, we need to be able to let loose…even if for just a bit.

I hope to see you there. I’ll keep you posted and as the date gets closer I will update you with details about my location at the conference.

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Word Counter

I’m amazed, when I look back over the past several years, how my vocabulary and knowledge regarding food allergies have grown.

My past struggle to explain food allergies (who, why, when, where, how), has been replaced with gauging how much is too much.  A good indication is “The Look”, glazed over eyes and periodic sighing, the tale-tale signs you’ve lost them in an information over-load. I’m glad for the growth but sometimes all that knowledge can make things difficult.

A question came up recently in a food allergy group that touches on this issue.

“What should I put on a medical alert bracelet?”

Good question. Space is limited and you need to communicate the most important things for first responders. This is not the place for a detailed medical history or the nuances of your diagnosis.

The situation is critical and you need the first responders to know… what? I would suggest these guidelines:

  • What would make things worse? Do you have drug allergies, do you take a critical daily medication, do you have an implanted medical device, etc?
  • What are your conditions? Do you have food allergies, a major organ condition, etc?

Use these questions to make your list. Brevity is the goal here. So make your list as long and detailed as you like then start widdeling it down. Try to get one or two words for each item.

Allergic to five different foods, no need to list all five, instead list “Multiple Food Allergies”. This let’s them know you have food allergies and to use caution and gives them a clue as to what is going on if you are non-responsive. The point is to give the first responders information that will help them treat you without making you worse. Remember, their goal to stabilize you and get you to the hospital. At the hospital, their goal is to get you out of danger and well.

When brevetity matters, what would your bracelet say?

FARE’s new president

As you may or may not know, FARE has elected a new president. Dr Baker has served as interim president since the previous president resigned in August. I invite you to read Dr Baker’s interview on the FARE blog.

FARE’s Blog – Dr Baker Interview

Sticks and Stones…

Every food allergy blogger struggles with which topic to tackle. Shall I pick a “Let’s all rally” or a “Finding contentment” topic. Should I pick something heart wrenching that may get a lot of shares? I lack the flare for that. No, instead, I am going to tackle words, specifically the words we speak to ourselves.

Sticks and stones can break my bones but words can never hurt me.  – Oh really?!

I remember coming home with my list of “can’t have” foods. I stood in front of pantry with bitter determination, thinking, “how bad could this possibly be?” Several grocery bags later and an empty pantry, refrigerator, and icebox…I realized that this was bad. Reading labels had opened up a whole new world…those pesky allergens were in EVERYTHING!

What was I going to eat? What was I supposed to do when I craved the things I was allergic too? I had to literally change my mind about good, “healthy food.” These things I could no longer have were not inherently bad or evil, but my body’s response to them was. How was I going to change my entire diet…overnight?

I confess, like many adults struggling with food allergies, I did not handle it well. My “adjustment” was radical. I ate very little in the first few weeks. All of my go-to recipes were no longer safe. Eating out was definitely not an option. In all of this, I struggled not to just have a little of the now forbidden foods.

That is when I began telling myself, “I can’t have that, it will kill me.” Is this a true statement? Well, yes. But in my effort to keep myself safe from my own desires and cravings, cross-contact, and a host of other terrifying scenarios, I began building an unscalable wall around me, in my own mind.

Years ago I made the decision to stop watching CSI, Criminal Minds, and NCIS. I found my mind overwhelmed with fear. I would always drive around a bit before parking my car, envisioning one of the many episodes where a serial killer was hiding behind a bush. Although the possibility of someone attacking me is not impossible, it was certainly not something I needed occupying my thoughts all the time.

So, several years after receiving my “list” a few trips to the hospital and the “list” growing, I had to make another decision. Is having a reaction a possibility? Absolutely. Do I need to be constantly telling myself “That will kill me.” No. The goal is to stay safe and healthy.

While I was staying safe, I was making myself unhealthy. So from freedom to the snares of bondage, I think I have found a balance in my words. I now say, “I can’t have that, but I can have this.” Now, it is less fear based, but more about a choice, “This makes me sick but this does not.”

I know it is popular to refer to our food allergies as “life-threatening” and there are times and places that is needed. But, not in our heads and our hearts.

I know the reality of my food allergies. I know what it means to use an Epi-Pen, several times over. I also know what it is to live in a self-made hell of fear. welling on all the possibilities of what could go wrong,  dealing with the aftermath of reaction when you have been so careful.

I get it. But, instead of surrounding our minds with forty-foot walls fifteen feet deep, topped with barbed-wired and broken glass bottles, maybe we could change it out for a little white picket fence? One you can see over and through.  One that allows us the  freedom to think creatively about living and flourishing with our food allergies?

What words are you speaking to yourself? Are they helpful or hurtful? Do you feel walled-in? Would you like to stay safe and also be healthy? Maybe consider writing down the words you speak to yourself. What could you change them to?

We can’t change the reality of food allergies, but we can certainly change how we view and interact with them.

 

Flourish with Food Allergies is a certified AllerCoach firm based out of Houston, Texas. You can personally connect with Lauren at FAcoachTX@gmail.com.

The Yo-Yo Effect or That Which Shall Remain Unspoken

Dealing, living, with food allergies has the unfortunate consequence of numerous trips to the ER every year for anaphylactic reactions. My last visit was just a few weeks ago. It was more series than previous visits, I was intubated and spent some time in ICU and was eventually discharged after a five day stay in the hospital. The physical toll has been rough. I did not bounce back like I had expected too. In the past, I’d spend a few hours in the ER getting IV drugs, go home and be at worth the next day. This time was different, it totally wiped me out. The medications effected me in ways I was unprepared for.

However, as hard as the physical has been, nothing could could have prepared me for the mental and spiritual aspects. Normally, after a reaction, I’ll struggle with nightmares and some anxiety (the typical ‘did I read that label?’ ‘Is this really safe?’ ‘Am I sure there is no possibility of cross-contact?’). This time is different. I am numb. No nightmares, no tears, no anxiety…nothing. I have been told this is normal after trauma, that it is part of the grieving process. Grieving over the life that could have been, health, the loss of the good.

What no one seems to completely understand is that living with this particular autoimmune disease is like being on a yo-yo. It’s not just a ‘reaction’, as if it is just itching and sneezing, it is a brush with death EVER SINGLE TIME. Every time my throat closes and I reach for my Epi-Pen I tell myself that it will be ok, and as a Christian I know no matter the outcome it will be ok, but the thought of having to go through that again is overwhelming.

So, what to do with this mess? Currently there is no cure and pathetically little in the way of research for a cure. So, live. It is simple to the point of trite, but powerful. Let your adversity shape you and mold you, let it smooth the rough edges and make something beautiful. The hardships and valleys in life are the tools used to shape us, not that we would be stronger and more pragmatic, but gentle and ultimately more dependant on God.