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Coping with anaphylaxis–Leaving a legacy on purpose

Life with life-threatening food allergies is not easy. With every bite I take (and for me that’s pretty often as to just maintain my weight I’m eating 6-7 times a day) I’m often faced with the fact that something may have gone wrong in the prep of the food and it may trigger a reaction. Or, I could have out of the blue developed a new allergy. It can be scary and daunting at times. At nearly every meal my silent prayer is , “God, *please* let this be safe!”

A few weeks ago I was one of the teen speakers at the FARE Food Allergy Conference near DC. At the end of the day myself and one other teen answered parents’ questions for an hour about how we deal with our allergies and shared tips and stuff we’ve learned. One of the moms asked me how with my allergies slowly increasing and having had so many reactions, how do I deal with the fear and anxiety that comes along with it all and developing new allergies and having so many reactions.

I gave her a brief answer, but that question got stuck in the back of my mind and I’ve been wanting to write a more full answer to that question. Because thinking about her question has made me think deeper and come up with a new perspective of life.

Dealing with my allergies increasing one at a time is annoying. But it’s not as hard to deal with as dealing with the fear of having a reaction. I’ve had 2 really severe anaphylactic reactions to airborne dairy which landed me in the ICU. And I’ve also incurred brain damage from those two. My memory is definitely affected from those, and daily life is definitely affected by the short term memory loss and struggle to figure out how to word something. You’ve probably heard people joke about how their brain cells are dying by the minute because the person giving a speech or talk is so so boring. Sorry, but its not funny. No, it’s not. Your brain cells are not dying from being bored. And you should be glad they’re not! Living with brain damage and memory loss from not getting enough oxygen is really frustrating at times. And it’s hard. I don’t wish it on anyone.

I’ve come so close to dying more than once. 4 weeks ago I had another reaction. I managed to hold things off for a little bit but then I couldn’t anymore and started wheezing. I made it to urgent care and then a nurse had to use my EpiPen.

They were just going to keep me for like 6 hours for observation when an hour or so later it started coming back. But I didn’t realize it was bad till it was really bad. I was really dizzy and light-headed and passing in and out of consciousness. I remember feeling like I was at the brink of death. Somehow I stayed alive. And somehow I reached the call button. There are chunks of time I don’t know what happened to. The nurse came in and then ran to get the doctor. I was super weak, my tongue was super swollen, and I was barely conscious. I could hear the doctor and nurses around me. Once or twice I managed to open my eyes when the doctor told me to. I managed a whispered answer that they could barely understand because my tongue was so swollen. The doctor called 911 and I have some recollection of hearing him talk on the phone and hearing him and the nurses doing something and then the EMT and fire crew got there. They all picked me up by my clothing and transferred me over and got me in the ambulance and off we went once the nurse has printed up a quick copy of my records from that night. Each time I’d manage to open my eyes it was like I was being shocked back into reality, then I’d close them as I was too weak to keep them open and I’d drift back out, aware of what was going on around me only through what I was hearing.

I managed to whisper to the EMT that I was starting to choke but I don’t know if he really understood me or not. But he knew I was starting to choke. And he could tell my tongue was really swollen. It didn’t even fit in my mouth. He drew up the Epi, but it felt like forever. He gave me Epi. Then he turned around. While he was disposing of the needle and stuff and putting stuff away, it kicked in. Another 30 seconds and my tongue finally fit in my mouth and I could breathe normally and I started waking up, like really waking up. When he turned around he looked at me, awake, coherent, smiling, and my tongue finally fit in my mouth and said, “woah!! Where’d your tongue go??!” While he was filling out paperwork in the ER he also helped keep an eye on me and also talked with me. He told me that in the 27 years of being an EMT he has NEVER seen a tongue as swollen as mine was. Then he asked me if I remembered when he and his crew came in the room at urgent care as I looked like I was sleeping. I didn’t see them come in, but I have some recollection of hearing them come in or at least I have some recollection of them not being there then they were there.

In the ER my nurse kept a super close eye on me and when the reaction started to come back again she got another dose of Epi. After that my mouth was parched. I wanted water. But she said absolutely not. I still begged. She still refused explaining, “if I give you water now and then the reaction comes back again and if we have to intubate you, you could throw up in the process and aspirate it you’ll end up with pneumonia on top of anaphylaxis, which none of us want. So no. Not even a sip.” She had a point. So I gave up asking. (Parched mouth is one of my most hated side effects of epinephrine) I didn’t get intubated, but they did all decide that I needed to be admitted. To the ICU. Again. I wasn’t thrilled at all. But I didn’t have a choice in the matter. I had totaled 3 doses of Epi, a ton of steroids, and I had freaked out the nurses and dr at urgent care as well as the EMT and a few ER nurses who heard the EMT’s account of the size of my tongue.

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While I was stuck in the ICU, my mom brought me my sketch pad and my colored pencils as well as my twistable crayons. I’ve found that drawing often helps me work though stuff when I’m working on coping with a reaction. Usually I draw frogs. But this time I was way too tired to draw frogs so just drew squiggly lines and then colored it in. There’s something therapeutic about drawing. It took me quite a few hours to draw this one as I would get really worn out.

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I spent 36 hours in the ICU. Then I managed to convince the doctor (the nurses all came to this conclusion as well, but the doctor had to be sure I wasn’t going to have another rebound reaction and had an ENT scope me to make sure that the swelling was completely gone) that it was safer for me to be home. Though for the first afternoon back home I wondered if I had done the right thing by begging to go home, but my immune system calmed down one I was able to rest and I was fine. They had to keep my ICU door shut and asked all the nurses to not heat anything with dairy in the microwave at the nurses’ station and absolutely NO popping of popcorn. When I finally did get discharged we had to walk out a different way to avoid the cafeteria. At home there’s a policy where no one heats up dairy products. And at home I could get much more desperately needed sleep and rest. The ICU is the last place you want to be if you are exhausted. I was awakened every 6 hours if not more frequently due to the schedule for meds they had me on (IV steroids and benadryl every 6 hours) as well as random interruptions for blood draws, vitals and then there was the blood pressure cuff inflating every 1-2 hours. And the monitor kept honking at me when it thought my oxygen level was too low or if I was moving around too much (mainly when I was drawing during the day). I was so so so glad to get discharged straight out of the ICU to home I stead of getting moved down to another hospital floor.

Over the next week I practically just laid on the couch and slept, or at least tried to sleep. The very thought of finding food to eat was exhausting. Somehow I made it to the FARE conference and somehow I survived the day sharing with the other teens and then answering parent questions at the end. But what kept nagging at me and made it the hardest reaction to cope with after the fact was what kept going through my mind back when I was still at urgent care and passing in and out of consciousness for what I have some recollection was an hour (pretty sure the clock hand went around a whole time, but there are chunks of time that I don’t have a clue what happened to).
I distinctly remember begging God to let me come home. I’ve had many reactions, and I’ve had several pretty bad ones. But I’ve never reached the point where I was begging God to call me home to heaven.

2 1/2 years ago my bestest friend I had known for 16+ years passed away due to a ruptured brain aneurysm. While I knew that she was in heaven where she had been longing to be, it still hurt so much to not be able to run up to her house and get a bear hug or pray with her over IM when I was having a rough time with something. It’s still hard and still hurts. Knowing the pain that it brings those left here on earth, I’ve been scared to die. No, I’ve not been scared of what happens to me, I know what will happen to me. It’s that I know the pain my family and friends will go through. And actually, food allergies have reminded me of how broken this sin-infested world is and how much I long to go home to heaven.

So it all comes back down to something one of my dear friends told me 2 years ago when I was struggling to cope after a reaction. She told me,

“Don’t focus on how close it was. Focus instead on how impossible it is for God to let you die when he’s not finished with you yet.”

And really, every time I’m struggling, I remember that and it puts things back into perspective. If God wants me here, he’ll make sure I stay here. If he says it’s time for me to come home, then it’s time to come home and I get to go to where my heart is.

And here is where food allergies are actually a blessing: I’m frequently reminded that one wrong bite of food could kill me. And so, I’m reminded that I could live years and years, or, I could die tonight. So, how am I going to live that will make a difference and change those around me and through that, change the world? That’s where the perspective of living life to leave a legacy comes in. When my bestest friend Amy died a few days after her 19th birthday, I was reminded that we don’t know how long we have to live. But Amy took each day and loved others and loved everyone with God’s love and the things which she had started didn’t just end with her life ending here. God took the stuff that she had been doing and he is still using her 19 years and 3 days of life to impact the lives of others, even now over 2 years after she died here on earth.

Sometimes it can seem daunting to try to live in a way that will change the world. But it’s just a matter of doing little things each day. Love those around you. Spend time with family and siblings (including those who can drive you nuts). This is the kind of stuff that people remember especially well. Live in a way that sets an example to those around you. Laugh & be joyful. Pick some project to do and like I told the teens at the conference, dream big and never give up.

Sometimes it’s just little things like giving your sister a random hug. Or helping her figure out how to play a game on the Wii or how to do better at a game. Helping her write a paper for school. Surprise her with something that she’s been hinting at and thought you hadn’t noticed. Having a random dance party while cleaning the house together. Laughing together about her mishearing me saying “I’m exhausted from standing up” as “I’m making sausages while standing up”(oh, the crazy things we mishear with an auditory processing disorder!). Watching Shaun the Sheep together even though we’ve both watched all the episodes at least 2-3 if not more times already. Watching a random other movie, letting her read my favorite book to me. Plotting a surprise together for someone else. Baking together or even just teaching her how to draw Super Froggie. Biking together and just having fun together. Spontaneously deciding to go out dancing in the rain and jumping in puddles together.

Sometimes the projects are bigger. I want to (now that my ankle is finally healed!) run a 5K and then 1/2 marathon for Bible translation projects into Signed Languages around the world. I want to help college students with food allergies stay safe and communicate with the dinging hall, dean of students and disability office. I’m working on writing stories for kids with food allergies with some new superheroes. I may not get to see every project of mine to completion. But, I can get them started for other people to take on afterwards when God does call me home… kind of like passing the torch. For now, I want to use my time wisely and be faithful to what God has given me to do.

And in the end, if I do die, I’m ok with that. It means God said it was time for me to come home. One of my best friends has told me many times over the last months that she doesn’t want me to die because she’s not ready for it. Death sucks and hurts. But God will provide the comfort for her and others. Whenever it is that God chooses to call me home, I’m ok with it. And I can’t wait for that day.

But till then, I’m going to push forward to change the world through the little things and leaving a legacy. And I refuse to give up. I’m going to keep fighting and keep going even when the going is rough. Even when I’m just frustrated from not being able to remember what I did earlier in the day or when I can’t figure out how to express what I want I to words, even when my memory just makes me fed up and makes life all that more challenging. Yes, there’ll be rough and tough days. But like I said: I refuse to give up. Looking back over my life, it’s a miracle that I’m still alive, so I know that God has a reason for keeping me here, and accomplishing that is what I’m going to do.

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5 Comments

  1. You are simply a hero in my book! Please send me an email! I want to introduce to my friend Zac who just finished his first year in college. You two are amazing and have such important stories to share with the world. Y

    You are a hero my dear and someone who was put on this earth to change the rest of us….and it’s already working!

  2. […] I read a post that sent the good kind of chills through my body from Food Allergy Froggie, “Coping With Anaphylaxis, Leaving a Legacy on Purpose”.    After putting away my tissue box, it dawned on me that I know three amazing young people who […]

  3. Marissa says:

    Wow! Thank you so much for your honest and hope-ful reflections. As an adult, I am just now learning about food allergies and have been frustrated with new ones popping up inexplicably. While I haven’t had a serious anaphylactic reaction, I’m frightened of one! Thank you for sharing your courage and helping me see that this doesn’t have to choke the life out of me.

  4. […] I read a post that sent the good kind of chills through my body from Food Allergy Froggie, “Coping With Anaphylaxis, Leaving a Legacy on Purpose”.    After putting away my tissue box, it dawned on me that I know three amazing young people who […]

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