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“You are NOT an inconvenience”

It was Tuesday. The first day of classes. I had arrived on campus in ND at UND for the SIL-UND program on Saturday morning, so I spent the whole weekend getting settled in. This included going around and knocking on random doors in the girl’s part of the dorm and introducing myself to new students and catching up with old students. Now, I’m an introvert. I don’t usually go knocking on doors to introduce myself to new people.

But this was different. I was knocking on doors to meet food allergy allies. People I could count on to come to the ER with me if necessary so I would have a ride home. People who would know my food allergy action plan. People who would know that I was giving them my permission and blessing ahead of time to tackle me and epi me if they thought I needed it. People who I taught how to use my EpiPens and where I kept them.

I had several people who had cars who said they were happy to provide transport or whatnot I might need should it arise. But between getting settled in and registration, I didn’t get to meet more than a dozzen people… and there were a bunch more I would meet over the next 9 weeks. This is also when I went and found all my TAs and profs for this year and sat down with them to explain my food allergies and what warning signs to look for in a reaction (ex: coughing or clearing my throat a bunch, scratching a bunch, giving this “look” that says “I’ve got a major problem” or even just catching her attention by signing in ASL). Sitting down with one of my TAs was literally a lifesaver, but I’ll tell that story another day. But I somehow didn’t walk into Amber’s room. Not till Tuesday night.

Amber was one of my TAs the summer before. But I didn’t get to know her that well, but she was nice and a pretty awesome TA too. And she had lots of energy. And somehow she was almost always smiling. But we had not really connected too much.

Tuesday’s classes went and I was glad I had made it through the day. Something happened at dinner. We still don’t know what happened, but we figured it was something with the silverware or dishes I used that just didn’t get completely cleaned. In any case, I knew something was wrong within 10 minutes. But I was too sleepy and dizzy to do much. I took benadryl. And then finally got up with a good friend and walked back to the dorm.

Whenever I was feeling off in the cafeteria, I would always make sure that I had a friend to accompany me to the dorm in case something happened in the 1/4 mile walk to the dorms.

We got to the dorm and as we were climbing the stairs to another friend’s room, I remember feeling like I was going to choke. “Just stop, and pull out Epi” a voice in my head said and insisted. I was coughing and knew I was having a reaction. Instead of doing what I should have, I reasoned, “well, I just took benadryl, it should kick in.” A really stupid idea.

By the time we made it up to the 3rd floor, pausing to cough several times, the benadryl had kicked in some. For some reason I took more. And laid on my best friend’s bed as she did homework. While I don’t remember how it all played out I then had another friend sit with me for 3 hours as we sang (I attempted to, I was too hoarse to most of the time), and took more benadryl near the end. I kept trying to decide if I should epi as we sat in the hallway. “Oh I should have just done it when we were hiking up the stairs!” I kept thinking. And I kept praying “God, help me to know what to do.” Finally, that friend too had to go somewhere. The door that was open with people in it? Amber’s.

We walked in, and I asked her and her roommate and boyfriend to pray with me. As I explained what was going on, Timon told me several times that I was NOT an inconvenience. And he and Amber would much rather take me to the ER than not do anything. It really hit home. That was the exact reason I kept hesitating to Epi. I knew that Epi meant ER and at least 4 hours in the ER. And it was 10pm by then. I thought I would inconveneince them.

This is how backwards I think when I’m having a reaction. ALL logic and proper reasoning and proper perception of stuff goes out the window.

This is why I tell friends they have my permission to hold me down and epi me even if I don’t want it, as long as they think I need it. I also carry a signed piece of paper that says the same thing so no one gets sued over saving my life for some buerocratic reason.

As they were praying, I could tell it was getting bad despite all the benadryl I’d taken over the last few hours. Amber looked at me as I sat on the bed. I had pulled out Epi from the pouch on my belt. She could tell I was hesitating. “How can I help you?” She asked assertively. Between breaths I managed to explain somehow the concept of how to use Epi. I couldn’t use it. I couldn’t hold it because I couldn’t breathe enough.

Timon bolted out of the room, down 2 flights of stairs and to the other parking lot to bring his car around.

Amber sat down next to me, swung and jabbed my thigh. Except I forgot to tell her to hold it in 10 seconds. It was in for less than even a split second.

THIS IS WHY I CARRY 2 EPIPENS: We needed the second dose. This time it worked. We waited, and it kicked in, and I could breathe again. I think everyone in the room heaved a sigh of relief. It was not long before Timon appeared. By then Epi had kicked in for sure and my heart was also racing. Add to that I was in a walking boot for a stress fracture, and I had just gotten 2 needles stabbed in my thigh. Timon just picked me up, and practically ran down the hall, and ran down the stairs at a pace that made me dizzy. He plopped me in the car he had pulled up, Amber hopped in, and off we went.

Note: we only went by car because it was much faster than calling 911 since the ER was less than 5 minutes away.

We got there and I managed to limp in the doors holding onto Amber and Timon. I thought I was pretty steady. The triage nurse didn’t. She put a bright yellow “fall risk” band on my wrist along with the red “allergy” band and name band. We were taken back immediately because I had told Timon in the car to say something along the lines of “severe allergic reaction/anaphylaxis” and “just used epipen”. There was a line of several people waiting, but they could wait.

After IV meds, it was the waiting game. Amber and Timon were troopers. They read to me and talked to me when I was more awake, and whispered and tried to nap when I was too out of it to pay attention to anything. In the middle if it all I happened to notice the clock was about to change to “00:00” and caught their attention. We all laughed later about it and how I apparently said some really funny things during the several hours there. I really don’t remember what was funny about what I said though. But I somehow managed to be entertaining 1/2 the time despite being a zombie.

3 hours in, something started to feel like it was swelling in my throat. The doctor came in to check on me and I told him. I was expecting extra benadryl, so my heart skipped a beat when I heard him say, “ok then, we’re going to need to give you more epi.” He had been about to discharge me till I told him the reaction was coming back. But he knew he couldn’t send me home if that was the case. So, more Epi, and more watching me. An hour later they finally sent me home. It was something like 3am when I finally got in bed. And I’ve got a feeling that Amber even went and grabbed her blankets and pillow from her room and spent the night on the extra bed in my room to be there in case I needed help. And she was happy to do it.

Even after all this, I still struggle. This is the greatest thing that gets in the way of me using Epi. I hate being an inconvenience. Hate it. Hate it. Hate it. But, I’m getting better at it. One day at a time. But it’s all basically about communication. If I communicate to people what’s going on, they’re always happy to help. I haven’t had a situation where no one wanted to help me. I’ve had TAs Epi me, profs drive me to the ER, friends carry all 125lbs of me down a hall and down 2 flights of stairs at a run, carry me into the ER… Yeah. They just want to see me stay alive and feeling better. It’s human nature.

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