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Experiencing Anaphylaxis


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. πŸ˜›

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. πŸ™‚

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.

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23 Comments

  1. Jana says:

    Thank you for sharing your story. I’m so glad you’re okay. Housing and Food Services from the University of Washington would not work with my multi-allergy son so he had to prepare and eat (alone) all his meals the two years he lived in the dorms there. I’m glad that your university is supportive and will evolve to meet your needs!

    • Chef Froggie says:

      Thanks Jana. I’m glad I’m okay too. It really is possible to eat safely in college, but not everyone really is comfortable with even trying to provide safe food for allergic students, and others (I used to be at a school before my allergies were this severe) think they know how to accommodate when really they don’t know that butter is also “milk” and don’t have a clue about what cross contamination is. I’m sorry your son had to have the extra time-consuming responsibility of preparing his own foods, and worse yet, eating them alone. 😦

  2. Susan B-N says:

    This was an awesome post. The ER Doc was right, don’t hesitate to use the Epi. That’s what it’s there for! Also, your gratitude to God and his providence and guidance is inspiring. It’s important to give thanks when thanks is due. Please stay safe and may God help you do great things in your life.

    • Chef Froggie says:

      Thanks Susan. When God has done so much for me, including saved my life and forgiven my sins, I have no other appropriate response than to be grateful for life and his mercy! πŸ™‚ I’ve learned a lot from this experience, and I do my best every day to keep my EpiPen in my pocket.

  3. Connie says:

    Thank you *so much* for sharing your experience. There are so many valuable lessons those of us who haven’t been through life-threatening anaphylaxis, can learn from what happened to you. Thanks again~

    • Chef Froggie says:

      Connie, I’m glad that I could share my experience and help others. I think that all of us would rather me not having experienced the anaphylaxis, but since I did, hopefully I can help others prevent anaphylaxis or to not delay in actually using their epinephrine in case of a reaction.

  4. I think your post is terrific. It really shows how it feels to have a reaction and how you can try and talk yourself out of its severity. I think you will help a lot of people by sharing your experience and revealing what you would do differently next time.

    I’m currently writing the sequel to a YA novel, SUNDIAL, and it incorporates the seriousness of food allergy as part of a plot twist in the story line. Would love your feedback on any food allergy issues you would like to see addressed in mainstream fiction if you ever get the chance. Hopefully, SUNDIAL and the next book in the series will reach the age group of the highest food allergic reactions (12-21 years of age) and help prevent any more anaphylactic fatalities by empowering those with food allergies and educating those without.

    Hope you stay vigilant and do not have to use your Epi again. (But if you do, do not hesitate!)

    Good Luck,
    Meghan Pearsall
    co-author, SUNDIAL

    • Chef Froggie says:

      Meghan, Thanks for the offer, but I am a full-time college student on top of managing my blog (hence why I don’t always post on a regular basis even though I try), so I don’t know that I would have the time to be of help to your novel. Good luck to you and your friend writing it and thanks for being an advocate on food allergies.

      Anaphylaxis certainly does raise one’s awareness and vigilance on staying safe, and hopefully I’ll be able to not need the EpiPen again… but if I do, I think I’ll have a lot less hesitation.

  5. Lynn Torpy says:

    Thank you for sharing . I’m glad you are alright πŸ™‚ Your friends are God sent. They watched over you and made sure you were ok. My grandson goes to pre-school all day this year. My daughter-in-law has been in meetings with the school staff making sure they understand Joey’s peanut and tree-nut allergy and the chance of possible cross contamination. [which you discovered afterward. ex : meat slicer] He has 2 epi-pens and benadryl which will be kept in the nurses office. [until NY passes a law to keep them in the classroom] I’m petrified. He will take his own lunch. I pray that he will have friends like yours who watch out for him . May you & Joey always be safe throughout your lives and always have someone around who cares.

    • Chef Froggie says:

      Thanks Lynn,
      Yes, food allergies can be scary, but it’s mostly fear of the unknown…. and the fear of what’s happened before possibly happening again. However, being diligent in checking foods does pay off, and it IS possible to live safely with sever food allergies. I’m praying that Joey has a safe year and makes a very good friend who watches out for him, and considers him a friend because of who he is, not just his allergies. I have a bunch of friends who stick up for me, and often when I’m willing to consider taking a risk they don’t feel safe about, they’ll tell me and that usually takes care of it… if my closest friends think I shouldn’t eat something, then ok, I won’t try to fight them over it if it means my life could be on the line!

  6. Janice says:

    Thank you for sharing your experience! I’m glad you have friends that can look out for you! My son has severe allergies to Dairy, Peanuts, Treenuts and Sunflower seeds. He also has less severe (back of the throat hurting) allergies to Shellfish and watermelon. We also avoid Gluten and Eggs. Although your reaction was very scary, I’m glad you are safe now! We’ve had a few close calls, where we’ve almost used the epi. We rushed our son to the hospital one time when he first had his anaphylactic reaction. They gave him benadryl and epinephrine at the hospital and he was OK after that. I or my husband carry his Epi-Pen with him wherever we go. He’s 7 now, and we’ve decided to pull him out of public school because his sensitivities have gotten worse. He reacts to airborne dairy particles and that causes asthma which has him going to the office to use his rescue inhaler 3 or 4 times a day. (Disruptive to his learning as well) We will be homeschooling him. (At home he NEVER has asthma). He may not be able to experience College like you do, but they have virtual school options now, so I’m not too worried whether he will be well educated or not. May the Lord continue to protect you and my son and many others with food allergies, and let us all be vigilant!

    I’ll attach my son’s blog, there are a few posts about his food allergies and how we manage them.

    • Chef Froggie says:

      Janice,
      Actually, I grew up homeschooled and LOVED every moment of it! And, I spent my first year of university on campus (before my food allergies got as severe as they are now) and I’ve been an online undergrad student for the last year and I’ll be doing the next 2 years online as well. I’m only an on-campus student in the summer when I travel out to ND to study sign language linguistics because I don’t really have the option of doing it from home. There are plenty of options of ways to do school, including university, so your son has plenty of options for getting a good education!

      Thanks for linking your blog. As a full-time university student, I don’t always get a chance to actually keep up with other blogs outside of twitter, but I did check it out πŸ™‚

      Never loose you vigilance in watching out for dangerous foods… and never forget to carry and not be scared of actually using an EpiPen if needed! πŸ™‚

  7. Deb Scott says:

    Thank you for posting this!! Your experience avoiding the epi is almost exactly like mine, I am allergic to latex, and always carry my epi but have always been too scared to use it. On a recent trip to New Orleans, I stopped breathing COMPLETELY, couldn’t get any air in or out. while I was fumbling for my epi, my husband handed me some water as it wasn’t clear whether it was a reaction or choking on my minty drink. accidentally. As the water allowed me a little air, I put the epi back. and took benadryl just in case. but as I still had difficulty breathing through dinner, it became clear it was allergic. When the Benadryl kicked in, it got better, but then after a couple hours it came back almost as bad, and I could barely breathe at all for the next 24 hours. Should have used the epi and gone to the hospital!
    (FaceBook Group: No Latex)

    • Chef Froggie says:

      Deb,
      I’m sorry you’ve had to experience that. 😦 But hopefully you’ve learned a valuable lesson in actually USING your EpiPen next time (and hopefully there won’t be another time when you might need to use it!). If your doctors have given you an EpiPen, it’s for a reason, so don’t be so scared to use it if you need it!

  8. […] Gluten Free Froggie in the Kitchen Who says life without gluten and other foods has to be bland? Skip to content HomeAboutContact MeFroggie’s Gluten Free Culinary School ← Experiencing Anaphylaxis […]

  9. Krystal says:

    Hi,

    I am sorry this happened to you. I have waited to long sometimes even tho I really really no better, for me almost 11years ago it was from being scared, I was fine after I did it for the first time on my own! Once in awhile I will get into brain fogs during a reaction and not register that I need it or even be thinking enough to know I need any meds. If people around me see I need them they will keep telling me until I take them. I have easy done over 200 epis of my own.. Reactions for me are usually multi up to 8. I am allergic to all food, Now after years of trying to eat they finally switched me over to medical formula! I am also airborne to latex and a some foods.. My allergies are really easy to set off. Which is why the high use of epi. A tip so your leg won’t hurt for days.. Right after you use the epi rub the spot it went into as long as you can! The more you rub the less it will hurt the next day! I really hope you never have to use massive amounts of epi!! Happy safe eating!

    • Chef Froggie says:

      Krystal,
      I’m sorry you’ve had to use the EpiPen sooo many times…. 😦 But I’m glad that you’re not as scared to do it anymore to save your life.
      Thanks for the tip on keeping my leg from being sore for days. πŸ™‚ I knew there was something that was missing in the steps that they used to tell in the instructional video for the old version of the EpiPen… but I had totally forgotten about that since they don’t mention it in the new video… and that on top of that I was brain fogged to some extent so I wasn’t even the one who was doing the thinking when it came to actually using epi, and that I didn’t feel a thing when he injected it (hence why I asked if it had really gone in). My friend who injected me with my EpiPen suggested the following day to ice it, and that helped.
      Stay safe from food!

  10. […] I went to North Dakota. I brought flour and stuff with me to bake random things to relax when I needed a break from […]

  11. […] the program done by SIL (Summer Institute of Linguistics) through UND. Coming here again after nearly dying last year takes a lot of courage at times. I’m an online student during the year, but in the summer I […]

  12. Celiac and Allergy Adventures says:

    That’s so scary! What a traumatizing experience that must have been. I’ve luckily never had to use my Epipen and hope I never have to, but I have gone into respiratory arrest before and no one ever figured out why (was it a reaction to a food? was it from my asthma being poorly controlled? was it from unintentionally OD-ing on my rescue inhaler?), so it’s very scary to me.

    It’s good that you had a friend who took control and saved your life!

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  14. 62664 says:

    I work with stuff such as this out here in Randwick, Australia.
    Zeal for what you think and in putting it into words is a real talent.
    Your writing is informative, illuminating, and passion-driven, all of which I seriously respect when it comes to this topic.

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