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Don’t rely on first impressions–they might turn out to be food allergy allies

Ever had a conversation like this with someone about one of the items of food on your tray?

“So what’s that?” a TA(not one of mine this year) asked.
“Oh, it’s sunflower seed butter!” I replied with a smile. I absolutely love the stuff.
“so it’s sunflower seed peanut butter!” he said
“NO! It’s sunflower seed butter. Period.” (I was not thrilled with this conversation)
“Yeah, sunflower seed peanut butter. Just like there’s almond peanut butter.”
“uh, no. It’s just almond butter. And this is just plain sunflower seed butter. With no peanuts in it.”
His wife tried to explain my point to him, but he wasn’t getting it. He ended up leaving shortly after, and his wife stayed there for a few minutes. On the brink of tears, I told her that that conversation he had had was not appreciated at all. (She was one of my TAs last year)

I tried to forget the incident, and for the most part I did. But it nagged in my mind. I debated going and talking to him and explaining that my feelings were hurt and I didn’t appreciate the teasing. But a few days later he found me in the lobby in the dorm and asked to talk to me. He apologized for what he had said and said he valued my friendship, and asked that I forgive him. I did. And friendship was indeed restored.

That all happened in the first week here. In the meantime, I got to know how his personality works and he learned what kinds of food-related things not to say and how not to say things. When I needed help with my computer in installing a program, he and his wife washed the table down where they were before I even got there. Things were off to a much better start. Now, 4 weeks later, that friendship was tested. How much did he really value friendship in tough situations and how well had he paid attention?

Sunday afternoon, I had anaphylaxis. It was the 2nd reaction here (had one the first week, and this one the 4th week). And this time, it wasn’t the cafeteria’s fault. It was somehow mine as I made it all myself in my room and it originally was safe, then later somehow got mysteriously contaminated when I ate the last part of it as a snack in the middle of the afternoon during a homework break. And that supposedly safe snack turned disastrous. I knew within the first bite something wasn’t right, but ignored it. Within 5 minutes I really knew something was up and grabbed Benadryl and hydroxzyine. I hoped it wasn’t going to get bad and it was just a false alarm or something that would go away with oral antihistamines. I grabbed my notebook with homework and went straight to the connecting dorm to be with friends and found some of my best friends’ room.

Within 5-10 minutes of talking about what was going on and homework and texting another friend (who was off campus at the moment), I could tell the reaction was getting worse, not better. My throat was swelling and I wanted to cough to clear it out. We headed down to the basement to be in the AC and around some other people. I knew I needed to Epi. And I really did not want to. Though I’ve been allergic for 7-8 years, only the last 1-2 years have I been anaphylactic, so I’m still learning the when-it’s-time-for-epi and when-it’s-not judgments. And did I ever mention my judgment is severely clouded when I’m in the midst of a reaction? It’s like the desire to avoid Epi and a trip to the ER is more important than catching the reaction faster so that it doesn’t get as bad. It’s ridiculous. But it’s also how my brain processes things. And I don’t think any clearer when I just took liquid antihistamine too!

The swelling in my throat went down some so I didn’t feel like I might end up gagging, and that was relief, though my chest wasn’t ready to let up on clamping down on me. And I was itchy. The friend I mentioned above and his wife were down there and they weren’t sure what to do at the time. But later, after it was getting to the point where we didn’t really know what to do, he came and sat on the floor right in front of me and said (this is the basic gist of what he said, there was a part in the middle where I managed to answer several questions about what the symptoms were and what was getting better, worse, or neither):

“I’m going to ask you a question as a friend. Remember, I said I valued your friendship? I really do. I do care about you. And I want you to be ok. I remember you telling me at the beginning of this summer that last summer, when Seth saved your life and you kept insisting that you didn’t want to use the EpiPen, Seth saved your life by insisting that you needed it, and finally you let him. You said that you don’t think clearly, and so I’m going to ask you: is it OK for us to take you to the ER? Do I have your permission to take you to the ER?”

I thought for a moment, and realized that’s really where I should be, and gave my consent. That was all it took. He went out and went to the parking lot and pulled his car up. But that wasn’t the end. He then went and washed not just his hands, but his ARMS UP TO HIS ELBOWS just to make sure he wasn’t going to get any of my allergens on me as he helped me get out to the car.

However, I didn’t exactly walk to the car. After I gave consent, I realized just how bad the reaction was and that it was only getting worse. I pulled out Epi from my pouch I AWLAYS have on me with 2 epipens, Benadryl, a vinyl glove, and wipes, and pulled out the plastic safety cap. But I was still scared. The last reaction I had, I waited too long for Epi, and couldn’t hold the epipen, so a friend had to help. But she didn’t realize you were supposed to swing, jab, HOLD, then remove. So, it was in for less than even a split second. Which meant I needed another shot. That one worked. And then 2 hours later in the ER I needed a 3rd dose. I was limping for at least a week. It h-u-r-t!

So, I decided I wasn’t going to wait that long and use it while I still could do it myself. Still, I hesitated. It’s NOT an easy thing to sit there with friends around you coordinating how you’re getting to the ER while you’re having a reaction and you’re contemplating jabbing yourself in the thigh with a needle. A friend noticed I was hesitating and said to someone else, “I think she’s going to use the EpiPen, but I’m not sure. Anyone know how to use it?” That’s when I realized that somehow, despite my teaching her 4 weeks ago, she didn’t remember. Uh oh! Another friend replied, “no.” And then to me said, “if you need it, then use it.”
“click” went the EpiPen as I jabbed it in my thigh.
I waited, counting to 10 or somewhere around there, and let the spring loaded auto-needle cover push it out. And then I took a deeper breath than I had for the last 40 minutes, and could feel the relief. And the swelling in my throat went down really rapidly and I wasn’t feeling like I might gag. The tension was gone. I did what I knew I needed to do, and I was going to be ok.

The friend was going to have me walk out to the car. But when they helped me up, I nearly fell over from being dizzy and still catching my breath. So, he carried me up a flight of stairs and out to the car. It was faster here for them to drive me to the ER (less than 5 minutes away) than to wait for the ambulance, and I still had another EpiPen with me, and the symptoms were resolving, so we had a bit of time to make it to the ER. They took me right back, despite there being a line at triage when they heard the word “epipen”, and I was back in a room within a minute or two.

Initial exam things were good. But then, while they were starting to get the IV in and get me checked in, the reaction started coming back. Oh if only I had Epied right off when I first realized this reaction was going to be bad! Maybe I could have prevented the reaction from coming back again! Alas, I didn’t. In the time it took the nurses to get things set up and all and then the doctor came, I could tell the reaction was definitely coming back. My throat was swelling again. And my chest was getting tight. And I was getting itchy again.

“Say ‘aaahhhh’” the doctor said.
“ahh” I said weakly
“Ahhh” He repeated
I tried again, but without any more success.
He had me try again 2 more times before asking, “does your tongue feel swollen?”
“uh, I don’t know. Maybe?”
“kind of like it’s thick?”
“somewhat. My mouth feels more swollen than my tongue though.”
“yeah, your mouth and tongue look swollen, I’m having trouble seeing the back of your throat.”

Gulp.

After a quick listen to my attempt at taking several deep breaths he went off to put the meds in the computer and within minutes my nurses were back with them. I was so glad when they came back, I was starting to get desperate, my lungs really wanted to try to clamp down on me and my throat was also increasing in swelling. The first med on the list? More Epi. Ugh! But I needed it. And I wasn’t about to fight the doctors who were trying to keep the swelling from obstructing my airway and having me turn blue! Then a neb was in order as were IV prednisone and more Benadryl and fluids. Within seconds of the Epi I could breathe full deep breaths. I took several and relished that feeling. Ah, it felt good! And my mouth and throat backed off on the swelling too. Certainly felt nice! It didn’t take long for the IV Benadryl to kick in though! My body was so worn out, that I was dosing in and out. 2 friends came to sit with me for 2 hours and I really don’t remember much from those first 2 hours. They later told me they had sung some songs, but I really don’t remember that! The nurse came to check in on me several times, but let me be till I was more awake. I was stable for the time being.

The 2 friends headed back to campus to go get dinner and it wasn’t long before that friend who had originally teased me 4 weeks before and then mended the friendship, was back with 2 other friends to sit with me for the next 2 hours. After that transition, I something else kicked in and I wanted to throw up. So, IV anti-nausea meds. That definitely helped. ☺ But then my mouth started swelling again, so they gave me another dose of IV Benadryl. Finally, I was stable and remained stable. They finally discharged me, and I got back to the dorm somewhere around 4-5 hours after we left the dorm.

Lessons learned?

If I know I need Epi, don’t hesitate. The faster I use it, the less likely I am to need even more doses. And the fewer Epis used, the less I limp. The time with 3 epis? Limped for over a week. This time with only 2? Limped for 3-4 days. Times when I’ve only needed 1 epi? Limped for 2-3 days at most. And we are also talking about my life here. I’ve never had a doctor tell me before that he was having a hard time seeing my throat because my mouth and tongue were swollen. That’s not a good sign!

And also importantly, don’t write off people as “food allergy enemies” just because they’ve teased or joked about your food allergies and your food once or twice. Sometimes they don’t realize that your feelings are hurt. They may just not realize that they need to be more sensitive to certain things they talk about. And now, I consider that friend a real friend who’s tried and true and really DOES care about me and really DOES value my friendship. And I’m thankful for him (and his wife). And I’ve gotten to know them in other ways beyond food allergy stuff because we’re friends, and the food allergy stuff doesn’t get in the way. It’s also a relief to know that they do care about keeping me safe. They’re the only ones who wash their hands before helping me out with something or cleaning the table before I come over for computer help.

And I’m increasing awareness in the not so fun way. It stinks to have an anaphylactic reaction. Really does. But, it does remind those around you just how allergic you are. It seems that at every. Single. Meal. Since the reaction, I’ve had at least one person ask how I’m doing after the reaction. Some heard through word of mouth. Some saw it take place. And some, I really have no idea. I sat down to dinner and someone asked a friend (who happens to have food allergies too, just not as severe as mine) “so are you the one who’s super allergic?” “Uh, that’d be me” I said. “Oh!” They replied. “How are you feeling?”
And at dinner tonight another friend asked if I had actually had an allergic reaction. Yes, I did. (I’ve also gotten in practice explaining what happened and about food allergies in ASL as several friends here are Deaf)

I’ve gotten so many comments about food lately that really, part of me just wants to go hide. Or go to a totally “MC safe” kitchen and bake and bake and bake. I really don’t get much chance to do that here because of homework. And I miss it. As soon as I get home, I’m going to get into a massive baking mode and bake and bake and bake. I seriously miss using the oven and mixing gluten free flours and other ingredients together! And baking with my little sister is also something I miss.

But, in the meanwhile, I’ll keep taking one day at a time. I’m ½ way through the semester here and I’ll make it to the end. I don’t know if I’ll have another reaction here before I head home (I sure hope not!), but sometimes I just can’t control that. I do my best, and try to stay safe, and trust that God’s plan is ultimately better than my own snapshot of the full-length movie. You know how when you pause a movie you often catch people with some crazy facial expression or something? Well, life is like that too. If we focus entirely on just the one frame instead of the whole movie, everything just makes no sense and seems totally crazy and blurry. But when you watch the whole thing, it fits together, especially when God is the movie director!

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2 Comments

  1. […] Don’t rely on first impressions–they might turn out to be food allergy allies – Gluten Free Froggie in the Kitchen is the blog of a college student dealing with multiple serious food allergies and this post details her experience having a friend that seemed to mock allergies at first ending up as a help to her during a reaction.  Her post for Food Allergy Awareness Week entitled “What CAN you eat????” is another one to check out.  The perspective of young adults with food allergies is helpful not only to fellow allergic individuals but to parents wondering what the future holds for their children. […]

  2. Quinton Thorstad says:

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