finding your allergy tribe
Copyright 2019 by Aleasa Word
Being married with kids, as in many families, a great deal of the responsibilities with the kids fell on me. I didn't complain and was fine being primary parent. The thing about being fine with that is that it's all peaches and cream until something changes.
When my daughter was diagnosed with life threatening food allergies I suddenly felt alone. No one in our families had ever dealt with this and it was pretty scary. I had a pine nut allergy but to be honest was very naive about it as I'd only experiences a reaction one time and didn't even carry an auto injector myself. In fact, I had almost forgotten about my own allergy until my child was diagnosed. Her issues were much worse in that she has 13 allergies at first. This left me in kind of a weird place feeling like I was in some alter dimension and had no one there to catch me falling as I tried to hold on to my child.
Eventually I found a support group but it was small. I worked with the group for a while and they were great people but it really didn't suit my needs. Eventually I started my own group. From that group, I became a walk chair for a national non-profit and it was then that I found my tribe .I met people all over the country that were just like us. Over the years we watched our children grow up even with some of them developing or losing allergies. Some gained additional health issue along the way. We became Facebook friends, real life friends and even confidants for one another. We went through marriages, divorces, school problems and everything in between.
As the parent of a food allergic child or as a person living with food allergies you must find your tribe. What we live is a complex life and not everyone understands it. Don't feel like you are over reacting if those around you don't get it. They simply don't understand. In time you will find ways to help the at least sympathize with you. Until then, make sure to joining support groups virtually or in person to help you on the journey.
Photo: Pixabay Rawpixel
no, i'm not ok; parents of food allergiCs and the lives we live
Copyright 2019 by Aleasa Word
After 14 years of dealing with life-threatening food allergies with my child, some would think I'm used to it. They may think it's the norm and we've found our rhythm. The truth is when you live with food allergies whether they are yours or your child's you never get to a place where there isn't a concern.
In recent news, an 11-year-old boy passed away from a suspected airborne allergy to fish. When news like this hits, the allergic community grieves and then our own fears creep back up again. Airborne allergies are supposed to be rare. As I've mentioned before the word "rare" does not mean they don't happen at all. So what if you have that rare child or you are that rare person? I've experienced that rare with someone in my own life and it is one of the scariest things you've ever seen. One minute cooking I was fish and the next this person's entire body began to break out in hives that looked like a movie where they slow the speed and as they crept up all over her body. Fortunately, in our case, we had epinephrine handy due to other allergies that had been previously diagnosed. To tell the truth, though, it was like a scene from a bad movie that was in slow motion the entire time. The disbelief, the actions to resolve it, the call to 911 and the subsequent visit to the hospital all played slowly even though it was all in less than a half hour's time.
Once that episode was over we experienced several more over the years for various reasons. To have a highly allergic child is not fun and no, I'm not always ok. My family isn't always ok and neither are the families of many others who live this way. When you have life-threatening allergies is a constant juggling act. It's like the math equation you can't solve. There's always a variable that jumps into play that you can't control or understand but you instead must react and work with what you have in minutes to make sure life is not compromised. Over and over we have to explain ourselves to others, unlike many other conditions. If I told you I had diabetes, you'd know oh ok I can't offer this person this or that and I know this person probably has some sort of insulin has to do XYZ. Because food allergies are different for every person, our realities can be different on a daily basis; however, the result of exposure is the same...ANAPHYLAXIS.
We do have norms each day. We do have moments when we can relax; however, in the back of our minds, there are always questions and extra checks we have to do even when we don't verbalize them. When people ask if everything is ok, we often say "yes everything is fine." If we didn't, we'd be deemed the dreaded helicopter parent who no one believes. As our children age out and many go to college with the same allergies we were sure they'd grow out of the concern is still there. Young people want to be what society considers "normal" and they want to do "normal' things without worrying about bringing attention to their allergies. They can't! They have to be mindful and hope they can find at least one or two trusted people who will help look out for them. The good thing about the increase in food allergies is that for many now college age kids food allergies are the norm so they get it more than older people do. They know it is an issue but there are those who still think it's funny to see a person's reaction when they break out into hives as play games with their unknowing college associate's life via pranks that are dangerous.
So the next time you ask a parent of a food allergic child (or even the children themselves) are they ok, know that deep beneath the surface of the "yes, I'm fine" there is a place where concern lives perpetually.
SOME DAYS ALLERGIC LIVING IS TOO MUCH
by Aleasa Word
Living with life-threatening food allergies, venom allergies or latex allergies is not an easy task. Though it's obvious many embrace their conditions and learn to factor in all the workarounds necessary to be safe, nothing says that it easy. In fact, there are days when I just feel like I'm so over it because there's always something to consider.
Unfortunately, we can't just simply proclaim ourselves over it because our lives depend on us paying attention and ensuring we are safe because of this condition. So what should a person do when they are having one of those days when they are just tired of it and frustrated? To be honest, the best thing to do is to simply BE HONEST with yourself. Be willing to be open about the fact that you're having a day. And by doing so, you acknowledge your feelings. If you don't acknowledge your feelings, you stifle them and you run the risk of them resurfacing later in other ways anyhow. Once you've acknowledged you feel this way, give yourself permission to simply have a moment! Don't beat yourself up. Don't judge your feelings, just have your moment. Once you've done that it will feel like a release. From that point on you can begin to move forward. Think of the situation in small chunks. What is it about TODAY that makes this get to you? ARe you having issues with someone? Is there a financial problem today that you didn't have yesterday? Did you or one of the kids have a meltdown? Did you forget to do something? There are a number of reasons we can begin to feel overwhelmed. However, if we identify the trigger, it's easier to deal with the feelings that follow the trigger.
Finally, though you or your child may have this allergy, there are so many other things to be happy for. At least you KNOW what your allergy is. Hopefully, you aren't being blindsided like some who may not have been diagnosed before. You know what it is you have to do. You have the tools to prepare yourself and that's a big plus. Hopefully, you have support as well. So take a moment, lean into your feelings, pause, breathe and then move forward one step at a time. Show yourself compassion and practice self-care to allow yourself to simply have a moment to breathe.
As you were perusing through the internet today I'd bet you didn't expect to find a reference to APSS aka Allergic Parent Stress Syndrome. Obviously this is a term we made up here at C4A; however, that doesn't take away from the reality that it really exists. Parents of severely allergic children often experience high levels of stress as they try to navigate the landscape of allergic living. This includes children with food allergies as well as those with severe allergies to things like latex, bee stings and venom allergies.
We know that any allergic reaction can be scary for us and this is especially true for those of us who have experienced or witnessed anaphylaxis. We also know the dangers and how quickly a reaction can escalate. We also know a lot more than we think we do and that same knowledge is what can help us get through the daily issues we often face. Here are some tips you may find helpful :
Heart of an advocate
Have you ever asked yourself why is your heart this way? Why do you feel so strongly about sharing your story and helping others share theirs? Why do you wake up asking yourself how can you help people navigate the journey just a little easier?
You my friend have the heart of an advocate. This heart aches with others. It jumps for joy with others and it also has the passion to fight the good fight with other. No need to fight your calling because fighting it won't help. It will call to you even when you are doing other things. It will remind you that injustices for others are opportunities for you to do more to help. You are what advocates are made of. You are the helpers mentioned the famous Mr. Rogers when he spoke of conversations with his mother. B
You are a special breed. And the world simply needs more like you.