Thursday, August 11, 2016

I'm Special, Not Odd

Originally published in “Allergy & Asthma News, Issue 3, 2005” and on

Everyone used to tell me allergies were a kid's thing. Boy, were they wrong about this!

I was 21 when I was first tested for allergies and since then I have had more surprises. At first, being told I had allergies wasn't too bad because they were the typical environment allergies... dust, mold, ragweed, cats, dogs, etc. - nothing that I couldn't deal with without any problems for 14 years.

During a visit to my allergist at age 35 I mentioned that when I ate certain foods half my face would swell. My allergist asked me what my favourite food was and I said donuts and French fries and that this was when my face reacted. This visit changed a lot of things for me as I left my allergist's office with my first epinephrine auto-injector, having been told that I was anaphylactic to "cottonseed". What an eye opener, considering that I didn't know anyone who carried epinephrine and I really didn't understand what this was going to mean to my life.

Thank goodness I had very supportive people around me who helped me deal with this new situation. They helped me find out more about anaphylaxis and how to eliminate "cottonseed" from my diet. Cottonseed is one of those items that was hard to find on ingredient lists but now I am seeing it more and more which means more and more items that I have to avoid. Cottonseed can be found in some 100% pure vegetable oils and can also be found in steak seasonings and other foods. Living with this allergy has been very difficult because I felt I was the only one with it. I have since found out that I'm not alone with this allergy and it's something that is becoming more common.

I still go out to restaurants and have meals but have to admit that it's sometimes hard explaining this allergy to restaurant staff because they figure the common allergies are the only allergies. It's amazing how many times people have assumed it's a peanut allergy as soon as I say I have a food allergy. Once I find a restaurant that knows how to deal with my allergy I end up going to it more often and get to know all the staff pretty well.

I am an example of adult onset anaphylaxis and am still getting used to dealing with this change to my way of eating. I travel for my work and it means that I leave a comfort zone but I always know that I just have to ask about ingredients and when I don't get an answer that I'm comfortable with I avoid the food. Whenever I travel even just short distances I always ensure that I have safe snacks with me.

Since developing this anaphylactic reaction 6 years ago, I have developed three other severe allergies, codeine, pineapple and raspberries. Once again, I am searching to find out where pineapple and raspberries can be hidden in various foods.

My husband is always there to support me even when sometimes I get tired of mentioning that I am anaphylactic. Having a wonderful support person has really made dealing with my food allergies a lot easier. He is always there to help me deal with this allergy and the occasional reaction. He is always willing to train others on how to use the auto-injector and also talk about dealing with food allergies. Having a good support person really makes a difference because knowing someone is on your side makes dealing with these allergies a little easier. I don't know how many restaurants he has gone into when I'm not there to see what oil they fry their food in but I do hear when he finds a restaurant that, as he says, is "Darlene friendly".

For the last four years I have been attending the AAIA allergy conferences here in Ontario and it's a wonderful feeling where for one day I feel I'm part of a majority instead of a minority. Seeing all the different people who are dealing with anaphylaxis and being able to share stories makes it so nice, as I know I'm not alone. There are lots of us out there.

I am a lot more vocal about being anaphylactic because I know being adult onset I am dealing with the same feelings a child goes through – just all at once instead of at different stages. No I'm not peanut allergic, but I'm special! I have an uncommon food allergy and know that with some effort people will see there are a lot of others just like me.

Life still goes on for me but it is a challenge that I live with every day. I am a lot more vocal about my allergies now. I volunteer with the AAIA and am glad that they have been around to help me deal with my allergies, asthma and anaphylaxis. Now I know I'm not alone and I simply tell people, when I talk about my allergies "I'm not odd, I'm special".

Here are some updates since I wrote this article 11 years ago.

I was very lucky and AAIA asked if I could assist them with some of their office duties and I became their part-time National Administrator and have been working with them for the last 5 years. It is something that I have enjoyed doing because of how much AAIA has helped me learn to deal with my allergies. I assisted in organizing their EpiPen Take Action events which helped raise funds for research and education on allergies and anaphylaxis. Through working with AAIA, I have found others that were allergic to cottonseed and that was something I didn’t think I would.

I have gained (“lucky me”) another food allergy to the list and that is shellfish so that means a lot of fried foods out in restaurants have had to be eliminated. I haven’t found it too difficult except when I really want french fries and can’t have them because of the otherwise safe oil is also used for their deep fried calamari.

I remain vocal about my allergies because I know it is something that a lot of people still don’t understand or aren’t willing to make accommodations. My allergies are part of who I am and no matter what anyone else says I have to live with them and the impact they have on my life. I do my best to deal with my allergies alone with the assistance of my wonderful husband, but I still need to talk about them to others. Whenever I go to someone’s house I have to let them know that I have food allergies if I will be having a meal there. We have some wonderful friends that have been able to understand and deal with the allergies without any issues. Whenever we are going over to their house they simply request an updated allergy list to ensure that I will be safe at their house which I appreciate.

Early on as a volunteer for AAIA I enjoyed the opportunity of doing presentations on allergies, asthma, and/or anaphylaxis in the Toronto area. I always enjoyed the chance to help educate others and talk about some of my own personal challenges. Over the last few years I haven’t been given the chance to do these presentations and I miss doing them. Part of me isn’t sure why I have been blocked from doing the various presentations, maybe it’s because I am not peanut allergic or I am not a mother of an allergic child, as if that matters as I do live with all of these issues. If there are presentations that need to be done I would love the opportunity to either do them or at least discuss them.

I continue to help educate others about allergies and anaphylaxis my own way and I always say “I’m special, not odd.”

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