Adventures with celiac — why your shampoo should be gluten free
I’ve made a lot of mistakes in my short life so far. But, like my aunt and Mrs.Frizzle say, that’s how you learn. Some mistakes have been not funny at all, others quite funny, and others have been funny only after the fact. And this is one mistake I’ll never make again and I’ll always chuckle at when I remember though at first I didn’t know what I should do.
Two or so years ago I had traveled to help some friends put on their annual fair for Deaf kids and their families. I love getting to help with it, it’s so much fun to be surrounded by ASL everywhere, especially seeing kids using it as their first language. But back to the story.
A few weeks before I had realized that my shampoo had gluten in it, so I changed it to one that didn’t. And boy am I glad I did! Not only is it a good idea to not be putting gluten on the skin of a celiac, but sometimes you can make other mistakes. The night before the fair, after we had finished setting it up, everyone went out to eat. I had planed ahead and ate dinner before going, but when we got to Skyline I ended up having a conversation with the waiter and he was amazing and after much deliberation, we figured out that the fries were one of the things that were safe for me. It was amazing to have a plate of fries from a restaurant and be able to eat it and not have a reaction.
Now, I also had a sinus infection and was on antibiotics, and due to inactive ingredients(lactose), I couldn’t have the tablets, only the icky liquid. But, I had discovered that by putting jelly or honey in the liquid, it made it taste less nasty. So, before going on the trip I poured honey into one bottle for this purpose. I also had poured shampoo into another bottle, which was exactly the same size and shape. Both were tinted with the same colors too. Realizing I could get them mixed up, I took a sharpie and labeled them.
When we got back from the restaurant, I was itchy due to the tree pollen and the benadryl wearing off. So, I was in a hurry to first off take the antibiotic as well as take some ore benadryl. I measured out the antibiotic and then poured the honey into it, slightly puzzled why it seemed a bit different than I remembered honey being. More puzzling was why it tasted so horrible.
All of a sudden, I realized I had poured the shampoo into the antibiotic, not the honey!! OOPS!! My friend and I were both freaking out about what to do. She pulled a book off her shelves and found that shampoo was NOT on the “induce vomiting list”. Still rather concerned especially that I felt like I was going to throw up, she called poison control. All turned out ok, thankfully the stomach ache only lasted 15-20 minutes and after that all I was left with was a really soapy taste in my throat. And my throat was rather dry for a day or so. So I kept munching on food to try to get it to go away (chocolate chips worked the best).
Thankfully there was no gluten in my shampoo, otherwise I’d have felt much much worse and for much longer too!
So from that I learned several things.
1. My friend and I, though both conversationally fluent in ASL hadn’t a clue what the sign was for shampoo. Both quite curious, she hunted it down in one of her ASL dictionaries and it’s a sign neither of us will ever forget.
2. Make sure your shampoo doesn’t have your allergens in it, and if you have celiac, make sure there’s no gluten!
3. Label things a whole lot better and before pouring something into anything when you’re traveling, double check to make sure you are pouring what you think you are!
I’ll never forget the look of shock on the face of the lady I was helping the following morning when I explained why I was munching on chocolate chips every 5-10 minutes! And while at first my friend and I were horrified about what happened, we later ended up laughing really hard about the whole event. It’s something I’ll never forget!
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.
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.
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.
Consequences of anaphylaxis: memory and processing issues
I remember going from breathing completely normally to having my throat completely swollen shut in somewhere around 10 minutes. “How much longer before I turn blue and pass out?” I wondered to myself as the nurse was drawing up the Epi in the syringe. My airway was so swollen that I couldn’t talk. And I was too exhausted from trying to get air in and out to really pay attention to what was going on around me. I was on the verge of being completely non-responsive. This was 8 months ago.
Then all of a sudden Epi kicked in. I could breathe once again. I relished those deep breaths, then opened my eyes and actually looked at the doctor next to me and smiled. She, quite obviously relieved to some extent asked me my name with which I responded correctly and the tension in the room lifted.
I was out of it apparently enough for her to be concerned about if I was still coherent by asking me if I know my own name. I was. But what I don’t think she, nor I nor anyone else who was part of the team that cared for me in the ER, ICU and hospital with 4 more rebound reactions ever expected or gave any thought to would be the after effects of nearly dying and not being able to get enough oxygen for I’m not sure how long.
For 3 weeks I was completely exhausted. So I didn’t think it strange that I was having more trouble remembering stuff. I just blamed it on being so exhausted and that my body was still recovering from it all. It’s completely normal for me to be exhausted for at least a week after anaphylaxis.
But I found myself struggling to get back on track with homework. I at first blamed it on being exhausted. But after a few more weeks when I was still forgetting things, including spelling simple words, I started to realize something just wasn’t the same as it had been before. I really noticed something was wrong though when I kept forgetting what I was talking about in the middle of a sentence. It wasn’t the same kind of thing where you’re talking about something and get sidetracked and forget what you were talking about.
I’ll be talking and AS I’m talking, I know what I’m about to say next and then it just dissolves. I find myself frustrated because it dissolves like sand. It’s really odd. I keep forgetting about key words I’m about to say that are relevant to the topic.
But also really annoying is when I’m talking about something then out of the blue it’s like my mind has just been wiped clean and I have NO clue what I was just talking about, but also NO clue I was just talking in the first place!
Equally frustrating is school. I used to be really good at writing papers. Now, it takes me 3-5 days to write an 8-10 page paper which I used to have no trouble writing and they feel really disjointed to me. I’ll write one part and then completely forget what I just wrote, so it’s a wonder I don’t accidentally write the same thing more than once! Yes, I proofread them. But even then after I just read a paragraph I’ll forget what I just read in that paragraph. One of my last papers the professor commented to me that I had been rather redundant. Oops. Reading and taking notes is also harder as it takes me longer to understand what I’m reading and I keep rereading because I completely forget what I just read.
Back at New Years I apparently set a few goals. Last night I found out in my journal I had set any goals. I was sure I hadn’t! Oops.
My best friend told me a few weeks ago that now she can make up stuff we’ve talked about because I can’t remember 1/2 of what we actually did talk about!!
The other day I met with my allergist to go over my action plan because it was really really confusing me. It turned out, what was making me so confused was that I had forgotten most of my action plan!! I had mentioned my memory issues briefly in the office and she didn’t think much of them besides that I should bring them up with my GP and that it could very well be due to a lack of oxygen during the reaction. But it wasn’t till that evening when she called to clarify something she realized that she realized I had completely forgotten the old plan that she realized what I meant by memory issues.
I also will be trying to say something and I just cannot figure out how to express it in words. Last week my mom asked me a question and I was trying to answer it. It was a simple answer. I just couldn’t find the words to reply. Finally she gave up and we just moved onto a different subject. But it drove me nuts that I couldn’t figure out how to explain something really simple. I used to not have this problem.
So, I scheduled an appointment with my GP. Who sent me to a neurologist. Who confirmed my allergists thoughts. Basically, I didn’t get enough oxygen to my brain (either there wasn’t enough oxygen in my blood or I didn’t get enough oxygen rich blood flow to my brain, aka anaphylactic shock, ie drop in blood pressure) which damaged my short term memory. It’s one of the first things in the brain that gets affected by a lack of oxygen. Combine this with the fact I have celiac and also am deficient in a few vitamins and minerals and you have me forgetting a lot more stuff than I used to.
The good news though, is I’m young. And with work to learn stuff and keep stimulating my brain along with sleep, exercise & good nutrition I should recover almost fully if not fully. So, I’ve got a tough road ahead. But I’m not giving up. I also graduated last weekend and I didn’t just graduate. I graduated with honors. It’s taken me a lot more work to keep up my grades this past year, but I did it.
But also, you know what? I think that more people deal with memory and processing issues after a severe reaction than admit it. I know one friend of mine is dealing with it too. But it seems to be that people think it’s not all that bad. Or that it’s all in their head or imagination. But it’s real. My neurologist told me that if you look on my MRI you won’t see the damage because its not big enough. But if you were to stick a microscope in my brain, you’ll find the damaged parts. They’re there. They’re real. And even though the damage isn’t really huge, it’s there and I can feel it’s effects every day.
But I’m not giving up. So, if you find yourself having memory issues after a reaction, it’s not in your imagination. Go see your doctor. It’s real.
Apple Pie Lasagna
This weekend has been pretty awesome. I have actually had a full weekend break from homework. Tomorrow, though, it’s back to the grind. But, till then I’m going to keep on enjoying the warmer weather, sunshine and free time to just be creative. So, I baked. 
Sometime last week my little sister came to me excited because she had had a vegan lasagna a neighbor made and thought it was really good. “And it didn’t have any cheese!” She told me. “Did it have tofu?” I asked. “Uh, yes.” See, I’m allergic to soy. She tried to say that it didn’t have much tofu, but I’ve seen vegan recipes before for this and they don’t have a tiny amount. As we debated the other ways I could make it I remembered another problem. Even if I used Daiya cheese, there was still tomato sauce. For years my body does not do well nor like tomato sauce. I can have tomatoes, but tomato sauce is different for some reason. Maybe it has to do with the quantity that’s in lasagna and other dishes. But it’s really hard to make lasagna without tomato sauce.
“You could use apple sauce!!” My sister said, laughing as she was referencing how she used to always get tomato and apple sauce mixed up and always said she wanted apple sauce on her pizza when she meant tomato sauce. We both laughed. “Uh…… no.” I said. Somehow in the conversation though I somehow came up with the thought of putting fruit in it. Which led to my idea of mixing an apple pie with lasagna, turning it into a desert.
Part of why I got rather excited about this idea is that I’ve really really struggled to make pie crusts that are gluten, dairy and soy free. It’s possible. But I just haven’t gotten something that I like quite down yet. But using lasagna instead, even though it would be different, I wouldn’t have to worry about making a pie crust in order to make pie. So, that also simplified things. After brainstorming a bit more with my sister and then with one of my friends, I came up with how I wanted to make it. And it turned out pretty well. This recipe is pretty simple and easy to make. So, here’s the recipe:
1. Peel, core and slice 9 large apples (more if they’re small)
2. Mix together:
1 cup sugar
1/3 cup rice flour
Cinnamon to desired taste (I like quite a bit)
3. Add the above mixture to the apples and mix well.
4. Preheat your oven to 375* F
5. Cook 9 pieces of rice lasagna according to package instructions
You can either snap the pieces to size before cooking or after cooking. While it is a bit harder to get a smooth edge when the pasta is dry, I find it easier than trying to cut it when it’s hot.
6. Butter your dish (I use Earth Balance buttery “spread”), then lay the first layer of cinnamon/sugar coated apples in the bottom.
7. Add three rows of the lasagna pasta, trimming as necessary.
8. Coat the pasta with some butter spread on it.
9. Cover the pasta with more apples. The inside layers I like to put 2 layers of apple slices.
10. Repeat with more pasta, then butter, and repeat till you get to the final pieces of pasta. Add a layer of apples on top, or two if you want.
11. Pour the cinnamon/sugar juice left at the bottom of the bowl the apples were in over the top of the completed dish.
Bake at 375* F for 45-55 minutes.
The apple pie lasagna is good both hot and cold, so you can serve it fresh out of the oven (don’t burn your tongue when eating!) or refrigerate it before serving.
Why I advocate for food allergy awareness in college
This week a college student died from an allergic reaction from eating a cookie. Epinephrine got to him too late, and the ending of the story is tragic.
What struck me when I read the article was how he was kind of careless about the cookies. He basically wanted to eat the cookies his friend was eating, so he threw caution to the wind and figured they’d be fine.
Truth be told, I’ve been in the same boat as him. In my freshman year of college. And I had no EpiPen at the time. Reactions had always been mild. Runny nose. Dizzy. Ending up really congested. I remember the day that changed, and I was not expecting it in the least.
It was just an ordinary week day. I was in the lunch line in the cafeteria. I had grown tired of asking to read ingredient labels. Tired of only being able to eat 1/2 of the food provided (keep in mind, this was at a school that wasn’t great at handling any kind of dietary restriction at all). But I read the ingredient label on the buns. It included dairy.
“But just a tiny bit” I figured as it was at the very end of the ingredient label.
Tired of watching friends eat the whole meal and not being able to eat a “normal” looking meal, I told the student serving, “ok, I’ll take the bun.” I ate lunch. It was good. But something just didn’t seem right.
I got back to my room, sat down on my bed to do homework and then just started to feel really weird. And then I got dizzy. “Ugh!” I thought, “I guess I’m paying for it…” But I had no clue what lay ahead in the next 30-60 minutes. I treked down the 60+ steps down to a friends dorm to do homework with her, only to find out she wasn’t there. So, I trugged back up, holding on to my book and the railing so I wouldn’t fall over. Got back to my room, didn’t bother to shut the door, lay on my bed, and just wanted to sleep. My throat started feeling funny, but I had no clue what was going on or what that meant. Another friend walked by to the laundry room and saw something looked wrong in my room and stopped by to check. I have absolutely no clue how much time passed, it felt like forever, but it was probably not that long.
I wanted to throw up (and I nearly did several times). I was coughing (but couldn’t clear my throat). I tried to swallow my saliva but instead found myself choking. I was bewildered. I didn’t know what to do. I was wheezing some too. And I didn’t know I had asthma at the time either. I didn’t even know that I should have taken benadryl! My RA came in and was clueless too. I had this nagging feeling in the back of my head that said “you need to go to the ER. NOW. Tell your RA she needs to call 911.” But I couldn’t get the words out. I was at the same time rationalizing that I didn’t think it was “that bad” to go to the ER. And my RA made me feel like that was a bad idea. In retrospect, I should have just blurted out between coughing spells, “call 911, I’m choking.”
Exactly how it all unfolded, I don’t remember. I somehow was ok. I really believe it was a miracle that I’m still alive today.
That evening, the friend I had tried to hunt down earlier in the day came up to find me. I told her what had happened and how someone told me I needed to take benadryl but didn’t have any. She looked at me and went “Why didn’t you tell me???! I have some!” And she hiked down to her dorm, and back up to get me some. She explained that she’s allergic to shrimp, so she always has benadryl on hand, and a few weeks before she had her throat swell up in the cafeteria because her food had been cooked too close to the shrimp. I’ll never forget what she told me: “I had to chew the benadryl to get my throat to stop swelling.” I sat there in shock. Later I realized that she needed an EpiPen. As did I.
So, this is why my desire is to see colleges across the country learn about food allergies and how to keep students safe. This is also why I want to find a way to reach students who are going into college with food allergies and help them be prepared to stay safe and how to respond in an emergency. Because, though it’s not always talked about, its true and scary.
But food allergies can kill. Not only that, they DO kill. So, be ready and keep alert. And remember: If in doubt, leave it out.
And ALWAYS CARRY YOUR EPIPEN OR AUVI-Q!!!
So, like I’ve said before: “Don’t wait till it’s too late: anaphylaxis doesn’t discriminate.”
Food allergies and forgiveness
The 2 months I spent in North Dakota at the SIL program at UND were jam packed with learning. Yes, I learned what it’s like to take grad-level classes (and I’m still an undergrad!) and how to do linguistic research and how to write linguistic papers and analyze sign languages from a linguistic point of view. But I learned more than just that stuff.
Food allergies have forced me to mature more and be constantly on my guard. It’s always when I drop my guard that something bad happens. Sometimes even I don’t drop my guard, I just don’t have it high enough. I learned that it was my responsibility to keep myself safe and I couldn’t depend on the people around me on campus to remember and keep me safe.
But there’s one other lesson that stands out to me right now: the lesson of forgiving others, and not just that, but forgiving myself.
I was eating lunch. It was a totally normal day. I ate the same thing I had eaten for several days for lunch and been careful to wash my hands once I got in the cafeteria. One of my best friends joined me and we joined a bunch of others with the SIL-UND program.
I should say that within the program, since there are only about 200ish (including staff and professors) you get to know almost everyone there pretty quickly. And you develop the closest friendships in just 9 weeks with some of them.
Then as I’m almost done with lunch, I start to open the container of coconut yogurt. Except I have a problem. The foil lid seems like it’s been super-glued to the container! I just can’t get it open. I tug. And tug. And tug. I’ve got the spoon in my mouth to keep it clean, so I can’t really talk.
To my left was one of the staff who I didn’t know very well at all. We had just been talking about how she was eating pizza with her hands and I’m severely allergic to dairy. Then, it seems she totally forgot about it… either that or she didn’t connect the dots. She saw I was having trouble opening the lid so, without asking, reached over and grabbed the yogurt cup (which I was still holding onto) as to help me. With the spoon in my mouth, all I could do was say, “MM!!!” and pull the container away. She was puzzled, so my best friend explained.
Finally, I managed to open it. I figured, “well, she only touched my hand and the outside of the container. It should be totally fine.”
Well, it wasn’t. For whatever reason, it could have been something got in the container, or very likely it could have just been from her contact with cheese covered hands on my hands that triggered my body to react.
Within a minute or two my hand started to itch really badly. I finished eating really fast and ran down to wash my hands in the bathroom, scrubbing them 3 times with soap and water before they weren’t itchy anymore. And then I took Benadryl as I was walking to the dorm, then grabbed more from my room, and started walking to class.
Long story short, my throat started to swell on my way to class, but by the time I was about to pull out Epi, the Benadryl kicked in. I was relieved. 3 hours later, I took another dose of Benadryl to keep the reaction from rebounding. That didn’t exactly go as planned. I made it through class then plodded to the dining hall for dinner, unable to walk a straight line because I was so sleepy. And then the hives started popping up on my back and chest. I could FEEL them popping up! Iiiiitchy!! My throat was fine though… for a few hours.
In the end, one of my best friends decided after having me take an extra dose of Benadryl that since it wasn’t working and my tongue was really swollen and my throat was starting to swell, we needed to head to the ER. So we did. And as the nurse was putting the IV in my breathing got worse and worse. She radioed for another nurse to bring her epi and she gave me a dose, then went off to find the doctor, once I was breathing better and not in danger.
Over the next few days, I struggled a lot with what had happened. How could she have done what she did?? She stuck her hands on me and my food without even asking if she could help! And we had just been discussing my food allergies and the fact she was eating pizza with her hands so they were covered in cheese residue! She should have known better!
I really struggled. I couldn’t see her without thinking about how she had nearly killed me. I wanted to make her realize what she had done and make her pay the ER co-pay. I wanted her to know just how much she had hurt me. Because she was the one who messed up my food. She nearly killed me!
After a few days of this, I realized that this was absurd! And I realized that I wasn’t so much mad at her, but really, I was mad at myself.
Why? Because I’m the one responsible for my food and staying safe. I can’t expect others to remember everything and not make mistakes. I should have washed my hands right away and washed the yogurt cup before I finally opened it. I know better!!
So, I went to find one of my friends. But she wasn’t on campus that night. Instead I happened to stumble across one of my old TAs from last summer. She took one look at me and knew something was up. So we went outside and talked. And by talked, I mean we talked for probably a good 2 hours if not nearly 3.
She started out by listening to me, then she asked me, “Is God mad at you?”
I paused.
I thought about it for a moment. “Well, if God sent his one and only son to die for all my sins while I was still a sinner (technically I still sin but God has forgiven me and calls me “not guilty”) and cares for me as a Father who has adopted me and kept me alive through this last reaction… Then no. God is not mad at me. And if God, the creator of the universe, isn’t mad at me but instead just wants to show me his love and compassion, then I really have no need nor reason to be mad at myself nor at the other person.”
I realized that holding onto the anger wasn’t going to get me anywhere and would only hold and keep me back and unable to move ahead.
So then we prayed together.
“God, please, help me to forgive _____ and myself. I can’t go on living like this. I don’t want to go on living like this.” And I forgave her. And myself.
After that I could look at this lady and not with anger on how she nearly killed me by her carelessness. I sat by her a few more times during the summer. I just made sure to keep an extra cautious eye on my food and leave a bit of buffer room. I’ll never forget what she did. But I have forgiven her and myself for what happened. I can’t go on beating myself up for things like this. It’s ok to make mistakes. As long as you learn from them and you don’t keep beating yourself up over them.
I think that with food allergies, it’s easy to be mad at someone who might be careless about how they act around you even after you’ve tried explaining things to them. But really… by holding a grudge, are you helping matters? Have you considered that the one who is hurting from the problem isn’t them, but maybe you?
Wanting to retaliate isn’t going to help matters. Instead, try educating them gently and forgive them. It’s amazing how much forgiving someone frees you and gives you the ability to move on. I love the song “losing” by Tenth Avenue North.
“Oh, Father won’t you forgive them? They don’t know what they’ve been doing. Oh Father give me grace to forgive them, cause I feel like the one losing.”
Chocolate cookies
Oh. My.
These cookies are ahhhhhmazing! I just had to share. Especially after leaving off on a kinda scary note of the story from the last anaphylactic reaction a few weeks ago. I’ve had it on my mind to bake over the last 3 weeks. But well. I’ve just been in survival mode. Being a full-time student doesn’t make it easy and I’ve been working on catching up. But this weekend I decided to take a break from the assignments and reading and give my brain some time to let the creative juices flow. I started out by sewing a froggie hoodie for the dog. Then today I made pumpkin, sunbutter, chocolate muffins. And then cookies. Oh my. They’re all sooo good! Why did I wait so long to make them?? Ok, probably because I’ve been too tired to try to play with recipes and adjust my favorites to being egg free over the last month and half. But I finally got around to getting egg replacer a few weeks back so things have been turning out a bit more normal when I bake now.
I kind of took the recipe from Jules, but made my own adjustments to it based on things I’ve done in the past and also kind of forgot an ingredient.
8 TBS coconut spread (this has more of a consistency of shortening, not butter, so it works better with cookies than any margarine does)
1 TBS egg replacer
2 TBS coconut milk (So Delicious, not plain coconut milk from a can)
Beat together with electric mixer. Then add:
1 cup sugar
dash/squirt of vanilla
Beat well together. Add:
1/2 cup brown rice flour
1/2 cup sweet white rice flour
1/2 cup sorghum flour
1/3 cup cocoa powder
Mix well and then stick in the fridge for a bit. Preheat oven to 375 F.
Grab a lump of dough (about 1/4 cup) and roll into a ball with your hands, and place on the cookie sheet (I just line mine with aluminum foil, the cookies do not stick so NO need to grease it) and flatten slightly. Leave about an inch or 2 between each cookie.
Bake for about 15 minutes.
Remove from the oven, and do your best to wait a few minutes before removing them from the cookie sheet so that you don’t burn yourself!
Makes about 18 cookies. You can also only make 1/2 and freeze the rest for another time when you’re really wanting cookies but don’t have the time to throw together the ingredients. Just thaw the dough enough to shape, and bake. But, I’m going to recommend that you double the recipe and make extra to freeze. Oh, and btw, they freeze really well.
