I’ve hesitated writing this post for the last 3 weeks. I’ve written several drafts, but I’ve just not wanted to post about it yet, as I’m still getting over what happened. 3 weeks ago yesterday, I had to use my EpiPen for the first time while I was at SIL-UND. Yes, I did eat a TON of safe food for me during the 2+ months I was there, but there were a few issues at times, but they weren’t all that bad… at least the way my mind rationalizes things like this, they weren’t that bad if you compare them to what happened 3 weeks ago. Still, in the end, UND’s cafeteria did a great job of feeding me and it’s not going to be something that makes me never want to go back. They did a good job overall, and I’m hoping to go back next summer or the summer after that.
The first one was the 2nd week, and it’s totally my fault. I wasn’t paying attention to what I was doing and grabbed a blue carton of what I thought to be coconut milk in the special diet fridge, poured it over my gluten-free cereal and a bit extra in a glass, grabbed some other food and went to eat. I lost my appetite after 1 spoon of cereal, but forced myself to eat the whole bowl as I needed the nutrition to make it through 4 hours of classes that morning. I took a sip of the milk in the glass and looked at the glass, saw nothing frothy around the edges and went, “OH NOOOOO!!!!!!!!” No wonder why I hadn’t wanted to eat my cereal! In the end, it was a very close call, but benadryl kicked in just a few minutes before the EpiPen almost got used, and I spent 3-4 hours in the student health center where they watched me to make sure the reaction didn’t come back.
Lesson(s) learned: ALWAYS pay attention (!!!) to what you’re serving yourself! In the “special diet needs” fridge there were 3 different kinds of milk: rice milk, lactaid milk, and coconut milk. All were in 1/2 gallon cartons and they were all blue! So, I ended up pouring the lactaid milk in my cereal instead of the coconut milk. After that, the kitchen staff decided to move ALL of the food that was for me and my best friend over to a different fridge to make sure that I wouldn’t accidentally pour the wrong milk again. And, I would read the ingredient label on the coconut milk nearly every time I pulled it out of the fridge and make sure that it said “coconut milk”.
The 7th week, something happened and we still have no idea what. I thought it was gluten, but then when my throat started to swell and so did my tongue, I realized it was milk. Benadryl kicked in, and I was thankful to have avoided the EpiPen… except that in retrospect I should probably have used it. But, as I’ve never used it before, I didn’t want to.
The incident that I referred to at the beginning of the post though happened in the 8th week, the 2nd to last week there. This was the scary one, the bad one… the one that required the EpiPen to save my life.
The UND campus has 3 dining halls. One of which I know is safe for me to eat in if everyone is careful with my food. Wilkerson is great. But they closed it down for 3 days to clean it before the fall semester starts… and sent everyone over to the small cafeteria (Terrace) for those 3 days. Everything was set in place for me to be able to eat there. Wilkerson staff who were used to taking care of my food would be there, and they were moving some of my food, not all but enough for 3 days, to the smaller cafeteria. However, did I say it was a much smaller cafeteria? The fridge where they put my stuff was also shared with other non-safe items for me, and the space in the back was much more limited. My goal was to eat the 9 meals there safely. I didn’t care as much about taste, as long as it was edible and safe. Lunch the 2nd day there though ended up not being safe.
I’ve learned to pay attention to signs of losing my appetite during a meal as it always spells t-r-o-u-b-l-e. But there are more signs to watch for than just that. It all started with a itchy mouth and throat while I was eating and not quite feeling right. I finished up my sammich (gluten free sandwich) and ate the melon, the feeling only increasing. So, I took benadryl, letting it sit on my tongue a few seconds before swallowing (I for some reason only have benadryl in tablet form). It helped with the itchiness and kept the throat swelling down some, but I was starting to get dizzy. I told my best friend, and she started to keep an eye on me. 2 other friends came over and joined us, one of whom was one of my TAs (not the same one as I mentioned earlier) who also used to be an EMT, and he also knew where I kept my EpiPens and what I was allergic to. I knew that he knew what to look for and what to do and that he would use my EpiPen if necessary, so I was able to relax some and not be as scared of what might happen. We all hoped that it was just some random thing that was not a reaction to food and that it would go away.
But it didn’t. I sat there spacing out and dizzy, and struggling to breathe. Seth and another friend Katie kept an eye on me, Seth’s biggest concern at the time was my color, which fortunately stayed “ok” (as in, I wasn’t turning blue), (though after using the EpiPen he commented that my color was a lot better). Finally, around 30-45 minutes (I lost track of time, only remember some timing of things because of what they told me afterwards) they decided it was time to get up. God’s providence was amazing that day… not only did God send Seth and Katie to sit by me after my best friend left to do homework, but Seth and I usually had class at 1pm (and it was 1pm right then), but because of the project that had been announced that morning, neither of us had class that afternoon! Katie was going to bring me back to the dorm to make sure I was around people as I still wasn’t feeling right. Except, that when I pushed my chair back, I was too dizzy to stand up. I was also getting short of breath… as in, I was only speaking when I really needed to, and even then, it was only a sentence at a time. Katie and another friend helped me to stand to see if I could walk with support, but I didn’t want to walk.
That’s when Seth started saying, “I think it’s time for Epi.”
“I don’t want Epi.” I kept replying.
The kitchen manager came over and asked if everything was alright, and Seth told her what was going on. She remained calm, and they started talking about where my EpiPen was, I pulled one out of my pocket, but Seth went and grabbed my backpack and found the extra one in there. The kitchen manager suggested that if they were going to use Epi, then maybe moving me to a quieter place than in the cafeteria would be a good idea. So, with 2 friends holding me up, another friend carrying my backpack, we started the slow 10-15 foot trek out the door into the hallway, where we stopped and I stared at a bench wondering why they wouldn’t let me sit there. I didn’t want to walk any further. Seth started insisting that it was time for Epi, but I kept telling him that I didn’t want Epi… except that by this time I had deteriorated further and Seth could tell by the fact that I was only answering in 1 or 2 words at a time, and even then, it was with several breaths between words.
Seth asked me if my breathing was worse and I told him I didn’t know. Katie said that it seemed better because just a few minutes ago she could feel my breathing when she had her arm across my back, and now she couldn’t, so it seemed better. But Seth knew differently. I was talking less, and was refusing to walk further, and was breathing shallower. Seth asked me if he was right, and I nodded my head in agreement that I was worse. They still insisted that they wanted me to make it to the lobby where there were more comfortable places to sit, and when I refused to walk further, 2 more friends helped (a total of 4) carry me to the lounge.
I still didn’t want Epi when we got there, and didn’t want to have to decide to stab myself with a needle. Seth kept telling me that from his medical training, I fit the bill for using Epi, and that as a friend, I really needed Epi. I finally told him that if he thought I needed Epi, he could use it. That’s all it took. He pulled the EpiPen he had been holding for probably the last 10 minutes out of it’s case, took the blue safety cap off, and that’s when I realized what he was about to do. I’ve pulled the EpiPen out of it’s case many times to show friends and teachers how it works, but I’ve never pulled off the safety cap off except for when the allergist’s nurse taught me how to use it. My EpiPen looked strangely bare.
Seth came behind me, put the EpiPen in my hand, put his hand over-top as he had been trained to do when “assisting” someone to use their EpiPen, swung, and jabbed my thigh. The room was silent, and the moment I heard the “click”, it was clear. Seth counted to 10 and pulled it out, and we all waited. Within 30 seconds, I could feel my lungs open up and relax and I could breathe so much better. I didn’t realize how tight my lungs had gotten. I asked Seth, “did it really go in?” He looked at my leg, “well, there’s blood, so yes it did.” I started talking more normally and looked a lot better, and everyone around me relaxed. I don’t think any of us expected it to work so well and so quickly! Even though I had taught many friends how to use it in case of emergency, I never really expected it to work that well or that quickly, but I’m sure glad it did!
While Seth saved my life with the EpiPen, the kitchen manager had gone off to where there was cell reception to call 911. Within a few minutes the paramedics had arrived. They were glad to see me doing better, but were concerned when they listened to my lungs… breath sounds on the right were rather distant. They wanted me to go to the hospital because it needed to be checked out and get a chest x-ray, but left me the option of if I was going to go by a friend’s car or if I was going to go by ambulance. That is they left me the choice till it was clear that I was starting to not think clearly again, and couldn’t decide or really think about it. I just sat there trying to focus (but failing) on the question and going, “uuhhh… what did you just say?” After a minute or two (I really don’t know how long) it became clear to them that they needed to take me by ambulance, in case this signaled the reaction coming back.
By the time we got to the ER and they had done their primary evaluation, the ER doc asked me if my throat was swollen. Um, I didn’t think it was but now that I realize it, yes, but I didn’t think it was because it has been worse before. They told me that my throat still looked narrow. After more benadryl and another antihistamine along with prednisone via IV (youch! That stuff hurts in the IV, especially benadryl!), which knocked me out for a good 45 minutes where I was coming in and out of sleep, I felt a lot better. Just before they finally got the meds in the IV, I had tried to read an article on sign language linguistics for class on my computer, but after a few minutes, it was obvious that I couldn’t focus and couldn’t even read 1 sentence and understand what it was saying. The friend with me chuckled when I insisted on trying to do homework… I was really a linguist if I was trying to do linguistic homework while still recovering from anaphylaxis and insisted that I needed to do homework. 😛
4 hours later, they let me go back to campus with a Rx for 3 days of prednisone. Yet I have so much more to share about being thankful for God’s provision during and after the reaction. Katie came to the ER in the ambulance with me, while 2 other friends came each in their own car, 1 to pick Katie up, and the other to stay with me. The friend who stayed with me didn’t have a class she had to go to, it was optional that day, and that was a blessing. I did miss my Brazilian Sign Language lab, but they anyway had recorded video of some of the things they had covered, and my TA gave me her notes on the page in the Goldilocks story. I didn’t have to coordinate any part of anything! God took care of all of it!
And, after using the EpiPen, none of the cafeteria workers wanted me to come and eat in the small one again. It was just too dangerous. So, for the next day, I had oatmeal for breakfast and cooked up some quinoa and dried lentils I had gotten for free mailed to me while I was at SIL-UND and had that for lunch and dinner. (Thank you God for safe food!!!) I was thankful for having been put in a different dorm than all the other SIL people at the beginning of the summer because I had access to a dorm kitchenette. Boy was I glad when we got back to Wilkerson though! I hadn’t ever been comfortable eating in the tiny cafeteria, so I was glad I never had to eat there again! Back in Wilkerson there was an increase in caution when anyone handled my food, and I was even more cautious that I had been.
Side note: I mentioned above about when Seth and Katie had been disagreeing about whether my breathing was worse or better, and Katie had felt me wheezing (which I almost never wheeze), and then I had stopped wheezing, but not because I could breathe better… rather because I couldn’t move enough air to wheeze… and that’s not a good thing. My breathing was really shallow and I wasn’t able to think clearly or really talk, that I didn’t realize how bad it was till 2 weeks after it happened. I could have died. I came close to dying. They didn’t do a chest x-ray in the end because when I got to the ER, my right lung was starting to open up and got back to normal by the time I left (thank you God!).
Also, the ER doc criticized me for not using the EpiPen faster than I did. He said that next time (which hopefully won’t ever happen) I need to use it faster. I’m very thankful that Seth put Epi in my hand and had me a part of using it, even if it was only with my hand holding it and him doing the actual action. After having used it once, if it ever happens again, I think I’ll be a lot less hesitant to use the EpiPen and less scared to use it myself. When I got the refills for 2 more EpiPens (my other leftover one is about to expire anyway) it came with a trainer EpiPen, and I’ve taught my mom and sister how to use it (still need to teach my dad and brother though), and I’ve practiced with it too. Hopefully I’ll never need to use the real one again, but if so, I know that God is always with me even in the harder times, and that he’ll give me the wisdom and courage to use it if if I need it. I don’t like limping for 2 days after the EpiPen, but I’ll take that over dying!
In it all, I can’t thank God enough for protecting me and keeping everyone calm, and that even if I had died, he has paid the price for my sins and forgiven me, and I would have gone to heaven to see my saviour face-to-face for the rest of eternity! But since I’m still alive, I thank God every day for life and breath, and I know that he has things he still wants me to do. 🙂
I now wish I had a dog that could smell my food for me and tell me if my food was or wasn’t safe… We did figure out what had caused the anaphylaxis the week after it happened: the sliced turkey. I had had minor reactions of tingling in my mouth and/or minor swelling in my throat and/or other symptoms every time I had the sliced turkey, but thought it was strange yet dismissed it because it always went away with benadryl. Turns out, the reason was because the turkey was being sliced on the same machine as cheese, even though they said they cleaned the machine well between.
So, if you find yourself in doubt of whether or not you should be using your EpiPen, make sure and talk with your doctor before the situation arises and you have a clear plan set in writing (because I didn’t). AND, make sure to be extra careful with food so you have less chances of finding yourself in a position where you might need to use epinephrine. And lastly, know this: epinephrine really DOES help, and fast! Just please don’t wait till it’s too late to use it. Severe food allergies can kill.