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.
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.
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.”
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 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.”
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.
I’m thankful and grateful for life. And for being ok. And for my MedicAlert bracelet.
Last week, on Sunday while I was at church, something went wrong. It all started as a normal Sunday. My ankle was hurting like it had been for several days and so when we got to church I took the elevator up to the main floor instead of the stairs like I usually do. It did take forever before the elevator came though, and in the meantime I stood there waiting in the hallway.
This was the very same section of hallway I had bolted through to run outside a few nights before because the youth group had had popcorn around there. I didn’t notice the smell of popcorn on Sunday morning, but I was also not paying attention. I was just hoping I’d get on the elevator soon so I could get a seat in the sanctuary by the Deaf section.
A bit later I noticed something just seemed odd. My tongue was a bit itchy and then my throat started feeling weird. The swollen kind of weird. There was a lump in my throat that I couldn’t get out. The pastor had just started on his sermon and I was coughing, trying to clear my throat. Uh oh. I took some Benadryl and hoped all would be fine. But it didn’t work that way. By the end of the sermon I knew something was wrong but I really, really didn’t want to epi. But I knew I needed to.
After the service let out, I tapped the Deaf ministry leader on the shoulder and signed to her that something felt weird. I didn’t end up standing up. I tried to catch the attention of someone else I knew a bit farther away, but they never saw me.
“Oh great. What do I do now? I really hate Epi. And where is Mom and my sister anyway? Usually they’re here by now. I probably need to Epi, but who do I tell that 911 needs to be called? How do I muster the courage to jab myself with a needle in the middle of the sanctuary at church?”
All this was running through my head. I have no idea how much time passed before the senior pastor came walking by and he greeted the Deaf there like he does every week. Except I just coughed trying to clear my throat.
“Are you ok?” he asked, and when I didn’t reply he asked me again.
I have no recollection of what I replied besides I was still coughing.
“Hey,” he said to someone near him, “I think we need some medical help here”
Someone radioed for medical help and a member of the church who happens to be a doctor responded and came over within seconds. She asked what was going on and I managed to briefly explain to her. I don’t even remember what I said besides that I ended with something like “I think I need to use my epipen, but I hate it. I don’t want to.”
“I know. But I think you need it, so can you please use it?”
I opened the flip-top lid, slid the epipen out, pulled the blue safety cap off, held it, and then whacked myself in the thigh with it and began a silent count to 10 in my head before letting go and rubbing my leg.
“Oww!!” I moaned. “I know it hurts.” She said as she offered me an ice pack.
I have no idea who did what around me, but someone ran off and called 911, likely even before I epied. The kids pastor was there. Some other people were there. And it was not long before the fire and rescue crews got there. The church staff all tried to figure out where the rest of my family was. They tried calling, but there was no reception. They sent people to look around the building. No luck. Oh well. Someone would find them and tell them where I am and what’s happened I figured, and they said they’d do that.
They got me in the ambulance and the EMT in the back with me started getting my name and all the info and medical history. We hadn’t even left for the ER yet when I stopped him and said, “Uh, my throat’s starting to swell again.” He got up, and opened the back and said to the driver (who was talking with my mom telling her which ER we were headed to), “hey, we need to go now, she’s getting worse.” And off we went. I managed to answer a few more questions of my medical history before it was just getting too hard to swallow and breathe and that took all my effort. Within 30 seconds of turning out of the church lot, he hopped up, and said to the driver, “hey, I think we need to go lights.” And they flipped the lights and sirens on and sped to the ER. He then got oxygen on me in a flash, but it didn’t do much good. I started to zone out and close my eyes as it was just too exhausting to breathe and stay alert. I remember hearing one of the 2 in the back with me say something about getting a non-rebreather mask and I found myself with a mask that reminded me of a neb mask.
“You’re doing good” one told me. “try to keep the mask on your face” said the other as I didn’t care. I was just trying to breathe, but it felt like I was going to choke instead. At first it was just hard to get air in. As the minutes ticked on I was having trouble getting the air both in and out. It got to the point that every other breathe I tried to take was just like trying to suck air in… but I got no air. “Your oxygen is at 100%” said the one, but a few minutes later as my breathing got worse and worse and I started to feel like every few breaths I tried to get in I got absolutely no air in. I heard him call the ER and ask for a consult because my oxygen level was starting to go down. But before he could get permission from an ER doc to epi me in-route, we pulled in and he told them it was more of a warning that we were there and I was in serious trouble rather than asking if he could Epi me.
“We’re there.” I recall hearing as they pulled the stretcher out and wheeled me in. I ended up in a room and I remember thinking to myself, “how am I supposed to move over to the ER cot? I’m just trying to breathe!” But I didn’t have to think about it. I felt several people pick up the sheet I was on and slide me over to the ER bed.
“Call respiratory, now.” I heard the ER doc said as the EMTs briefed her on what was going on. The EMTs said something about how when we left the church I was fully alert and talking with them and now I was pretty clamped up and not very alert at all.
Someone took an arm and started an IV and someone ran to get epinephrine. “Look at me” the ER doc said to me and I managed to turn my head and open my eyes and look toward her, though I wasn’t really focusing on anything. She stuck an ENT scope in my mouth and looked at my throat. “Say ‘ahh’” she told me, and I just stuck my tongue out and tried to say something but almost no sound came out. I was trying! I just couldn’t get any sound to come out! She said something about how I was really swollen in there and that she could hardly even see my vocal cords I was so swollen. I don’t remember it all, but my memory says that she said something to someone about how I may need to be intubated.
Some nurse or tech on one side of me asked my mom about allergies to medication. I heard my mom struggling to answer and say something about the fact I have a bracelet with the info on it and was just coherent enough to reach the arm with the MedicAlert bracelet across to her and she flipped it over and read it, “asthma. Allergic to ibuprofen, dairy, gluten. Carries EpiPen.”
I’ve had this bracelet for just over a year and I actually need to update it with the more important info on it. But it just dawned on me as I’m writing this that this bracelet did speak for me when I couldn’t. I don’t remember saying much if anything at all from the last half of the ambulance ride till after the epinephrine kicked in. I was just trying to breathe and it was hard enough. I was at the point where it felt more like:
Try to get air in, but get next to nothing. Try to breathe out, get next to nothing out. Repeat. Oh yeah, and add to that the wondering if I was going to make it and if I’d totally clamp up and turn blue as I tried to get the air in and out failing ½ the time.
The ER doctor said something about how I should stick my neck forward and it would make breathing easier. Someone propped my neck forward with a pillow but it did absolutely nothing. Didn’t help one bit. I was starting to wonder how much longer I’d last.
Someone stuck a needle in my shoulder and within 30 seconds my breathing started to quiet down and I didn’t feel like I was about to choke anymore. I’m not kidding. If they hadn’t gotten the Epi to me when they did, I probably would have ended up having my airway swell completely shut within another minute or two at the very most. I finally was able to relax and didn’t have to work to get air in and out.
I took a deep breath freely, opened my eyes, and looked to my right at the person standing there, the ER doc, and gave her a weak smile. “Can you tell me what you name is?” she asked. I replied with my name and we all heaved a sigh of relief that I was ok and coherent and still alive.
She took another look down my throat and commented that she had never seen such a good response to epinephrine! The swelling was just about completely gone. IV meds were given and then I was sent off to xray not to long after.
Once they had stabilized me mom pulled some note out of my bag and handed it to the doctor explaining that my allergist wanted to have 2 blood tests done the next time I had a reaction. The ER doc looked at them and instantly said something about how she knew exactly what the allergist was thinking about and that it was some complement disorder thing where you don’t have enough of something and so your body attacks itself. The cure? FFP. (Fresh Frozen Plasma) The best way to diagnose it? Give FFP and if you never have another reaction, then you’ve got the diagnosis and you only need like a shot of something once or twice in the future. That sounded wonderful! We decided to give it a go to see if it would help, though it took them forever to get around to giving me the FFP.
“Uh, my throat is starting to feel funny again” I told the xray tech ½ way through the xrays. She looked at me concerned and hurried up. By the time she had gotten all the views she needed there was no doubt that it was swelling again. We got back to the room and she went straight to tell one of my nurses and doctor it was coming back. It didn’t come on slow. By the time the doctor came (only a few minutes) and saw what was going on I was getting close to gasping for air and nearly choking again. The nurse got the epi ready and I remember hearing my mom arguing with the doctor about something regarding checking for vocal cord dysfunction while I was having a reaction to see if that was the cause. The ER doc said something about how vocal cord dysfunction doesn’t respond to epinephrine, and that my throat was really swollen, and the first time when she looked I was so swollen she could hardly SEE the vocal cords because of the swelling and that after epi it had all gone down.
The nurse was getting the epinephrine into the syringe when she listened to something and looked at me and asked if I had music. Uh, nope. That was me wheezing in my throat she was hearing. She got back to getting the needle ready and then I realized the nurse was hesitating giving me Epi because my mom kept trying to insist that the doctor needed to scope me again or something. I really don’t remember. I just remember turning to the nurse and managing to croak a whisper saying “hurry up!” That’s all it took. And again, the Epi worked wonders and within a minute I was starting to breathe normally again, and we were all relieved again.
Sometime later, the ER doc came back and said to me that she was NOT liking how close I kept coming with each reaction and how I was coming extremely close to the point where Epi wouldn’t work and they’d have to intubate me or cut my throat to put in a trach to keep me alive. I didn’t like how close the reactions had been either. “I’ve looked in your throat when you say you’re swollen and you really ARE! And I’ve looked in it when you say you’re feeling better and you really ARE. There’s no doubting you. I know you’re telling the truth.” And then she said that because of how close the reactions had come, she was going to need to admit me to the ICU in case it came back.
I totally was NOT expecting her to say that. I’ve been kept once overnight for simply observation, but never been to the ICU. Never. I’ve always been discharged from the ER and sent home within 3 to 4 ½ hours.
But before they admitted me to the ICU they gave me the unit of FFP. And ¾ through it, I started having another reaction. Rats! It took another dose of epi to reverse the reaction again (this was the 4th dose), but after that I was doing better. Something a friend wondered is if I might have an IgA deficiency and that could be the reason that I had a reaction at the tail end of the FFP. But we don’t know yet. But it was pretty clear that I didn’t have the compliment disorder.
Got admitted to the ICU and all was going fine. I felt something just seemed off, so I told the nurse. She said it was probably just my throat being dry so got me some water and tea. When they switched shifts and I got a new nurse I also got evening meds. Not only had I already gotten 125 mg of steroids in the IV hardly 6 hours earlier but they were giving me another 40mg! And then the nurse told me that my potassium was low. “Oh, so that would explain why my legs and arms have been crampy lately!” I said. Yup. It was. It took a bit to explain to the nurse that I couldn’t have the tablet (I actually just guessed it contained lactose and when she called the pharmacy they confirmed my suspicion) and got me a safe version. All was fine after that. I settled down to try to get some sleep, but before that happened I found my throat starting to feel weird. Again.
It was around 10:30pm I started having another reaction yet again. But I didn’t tell my nurse right off the bat because I wasn’t sure if it was just that my throat was dry or if it really was the reaction rebounding yet again. By the time I hit the call button for the nurse it was clear that it was a reaction. They came in and looked at me and tried to decide what to do. “Ok, we’re getting Epi” they told me several times and it seemed like they were a bit freaked. One ran and grapped epi and gave me another dose… not knowing that a normal dose is 0.3mg and they gave me 1 whole mg. It certainly did shoot my heart rate way through the roof for a few minutes! But they were all relieved that I could breathe and wasn’t about to choke and I wasn’t making funny sounds in my throat as I tried to get air in and out. I remember opening my eyes after the epi kicked in and looking over to seeing 3 ICU nurses all looking anxiously at me and at the monitor watching my vitals, especially my heart rate and the rate of breathing of my chest. One ran over to the phone and called the doctor on call saying “Hey Dr, we have an emergency” as he started to explain what had happened. Then he looked over at me and said, “oh, I think we’re ok now. She’s smiling. I think we’ll be ok.”
“Why did you wait so long?” my nurse asked, “You’re lucky the other nurse was walking by! Next time call me faster!!” She told me. “She did call.” The other nurse told her. I didn’t say it but the thought did go through my mind that I hate hitting the red call button. This hospital stay was certainly teaching me how to use it and not be scared of using it! The following day my nurse told me repeatedly “if you need anything just buzz me.” I heard that or a similar phrase really often over the 48+ hours. And I learned to not be scared to use the red button.
2 more reactions that night, but both times I told the nurse fast enough that she got me Benadryl pretty quick and we managed to do with just the Benadryl in the IV. I’ll say one thing: I didn’t get much sleep! I kept waking up every hour, right after the blood pressure cuff inflated around my arm! But I did sleep, probably thanks to the IV Benadryl.
A bit before rounds while my nurse was giving me my morning meds someone walked into the room and said, “hello!” I looked up at her and instantly recognized her. “Mrs.A!!” I exclaimed! “I thought I recognized your name!” She told me, then explained to my nurse that I used to be one of her students in highschool when I took her Nutrition and Food Science & Technology classes. Boy was it nice to have a familiar face who I hadn’t seen in a while, who also happened to be one of my awesome teachers years ago! (It was actually back in the first year she taught her nutrition class that I found out I’m allergic to dairy… but boy was it a much more mild allergy at the time!)
Rounds came and one of the doctors said, “we’re not coming in here, we don’t know what we might have on us!” I was a bit puzzled at first then realized she was concerned that some food residue on her clothing might trigger yet another rebound reaction. But, they all ended up coming in and my main doctor told me that they were going to keep me for at least another 24 hours, but they’d move me down to a step-down room.
That didn’t exactly happen. I hesitantly ordered lunch. An apple. Some canned pears and canned peaches. I asked the person on the other end of the phone what was in them and she said there was nothing. I was a bit surprised, but whatever. I didn’t have to eat it when it got there if I didn’t want to. I told the lady to be sure to be very careful with my food prep as I have a ton of food allergies and she replied, “I know that.” But it came across as a tone of voice that said she was aware but didn’t really care or know what precautions needed to be taken to keep things safe. They brought the tray of food and I told my mom I was hesitant to eat it. “I can wash your silverware for you if you want.” She said. “And if you do react to the food then at least you’re already here!” “True.” So I went ahead and ate. It was good. But I was still puzzled about how there supposedly was no syrup with the fruit as canned fruit usually has some sort of syrup with it to help preserve it.
Shortly after eating the pears and peach, my throat started swelling yet again. Whether it was cross-contamination in the fruit or if it was still a rebound from the reaction the afternoon before, I have no clue. It only took a few minutes for me to realize it was coming back. Sometimes a reaction comes on slowly, but none of them in the whole time I was in the ER came on slowly. Benadryl in the IV again (Ugh! Please! Nurses, if the IV is in my left arm, then don’t push Benadryl too quickly! Otherwise I’ll nearly throw up!) while they hunted for epi. “Your oxygen is 100%” they told me. “Yeah, I know.” I replied between breaths, “I’m still,” (breath) “having trouble,” (breath) “getting air,” (breath) “in and out.” (breath) I told them as I tried to push the air in and out. Air was coming in and out, but it was way harder than it ever should be, thanks to my throat being constricted and swelling more as the minutes ticked by.
I was surprised when my nurse came back in with a 2 pack box of EpiPens. He opened the box and pulled out the trainer and looked at it confused. I managed to croak a whisper that that was the trainer pen and he needed to pull out one of the others. He did, and I ended up saying something about how I could show him how to use it because it was becoming clear to me he had never used one before. He was used to using a needle with a vial, not an auto-injector!
So he handed me the EpiPen and I fumbled to open the cap and dump the injector out, pull out the blue safety cap, jab it into my leg as I winced in pain, and held it there. We waited. And then once again, it did its job and reversed the swelling and I could breathe normally again. Wait a second here… I just taught my ICU nurse how to use an EpiPen by jabbing it in my own leg with the real one??! I thought it was supposed to be the other way around! He then looked at the EpiPen, a bit surprised at how the orange thing extended after use. He took another look at the trainer and read the directions before putting it back away.
The exhaustion from this last rebound and the sleepiness from the Benadryl kicked in within minutes. I dozed in and out. Technically they were supposed to kick my mom out of my ICU room for 2 hours because it was “rest period”, but they never did. As I dozed in and out mom told me that my nurse kept walking by and peeking in my room to check in on me and make sure I was ok. She figured they let her stay because she was letting me rest as she read a book. I was too zonked to care much either way.
But after that things went smoother. Except the prednisone that I was getting in the IV 2x/day was starting to hit my mood. I was so, so, so sick of being in the hospital! I just wanted OUT! I was crying and was just beyond frustrated. I was really glad my nurse had told me that I could use my phone! Texting one of my friends kept me a bit saner than I would have been otherwise. And she’d been in the ER many a time for anaphylaxis so she knew what it was like to be on prednisone and worn out from a reaction and Epi. In the middle of the night though, the new nurse woke me up once I had fallen asleep (don’t you just love when they do that?), but it was for a good reason: they were moving me down the hall to a step-down room. Once things were settled down, the new tech told me, “the nurse will be in at 4am to check your vitals.” “Whaaaa??” I asked. And then I slept, and was extremely grateful for the sleep despite it being interrupted at 4am for vitals. But I never bothered to open my eyes then, I just stuck out my arm for the BP cuff, opened my mouth for the thermometer and my finger for the pulse-oximeter. Then I fell right back asleep.
Then the next morning I was feeling wonderful. Oh please! Discharge me!! I’m soooo tired of being here! But I was thankful that now I at least had a window I could look out of even if outside was grey and wet and most of my view was of the building. And then they started serving breakfast. As the trays of food came to other patients in the hall the smell started drifting into my room. Uncomfortable with this fact I called my nurse who gladly shut the door, especially as they agreed that the smell anyway didn’t smell good. The nurse then came back to check on me every 5 minutes. 10 minutes later: “Uh, I think I could use some Benadryl.” She went and got some and it helped, but I wished it would help more. The doctor decided that pending a scope done by the ENT would determine if they discharged me or not. If he saw my airway was swollen, then I’d stay longer. If not, then I’d get to go home. The bad news? He couldn’t make it till 4 or 5. That meant like 5-6 hours of waiting!
Mom went to get my homework from the car that she had brought and as she walked in, she found the ENT having just finished the scope! He managed to fit me in, and the results? Everything was wide open! WOOHOO! Why my throat felt off, we’re not sure except that it was probably something with swallowing that wasn’t quite normal. The good news is by this time I was starting to feel better. So off I went. Ok, not so easily as there was all the discharge stuff to do first, but I was finally leaving!
I can say that I have never been so thankful to be home. And alive! Oh yeah, and showered too. ☺ I came extremely close to getting intubated. That ambulance ride? It took about 10 minutes. So from the beginning when my throat started swelling again to when my throat was almost entirely swollen shut by the time we got there, happened in barely 10 minutes. It’s never been that fast before… nor as bad. And to need a total of 6 epipens? Yeah. That’s never happened before. 2 doses? Often. 3 doses? Once. 6 doses? Never.
I’m thankful for life. And for medicine that can save a life from anaphylaxis and all the doctors and nurses that helped to keep me alive. What triggered such a severe reaction? The suspect right now is airborne dairy. There are too many possibilities right now that it’s impossible to pinpoint 1 and say it was definitely the cause. I’ve discovered there are multiple kitchens that are used frequently and then there are 4 microwaves around the 3 stories of the building that are frequently used to heat stuff up… including microwave popcorn. While I’m not allergic to the popcorn itself, if there’s any dairy on it while it’s being popped or shortly after it’s popped, it will trigger a severe reaction for me.
Another thing that puzzled me was that with every rebound it seemed that the doctors and nurses were listening to my lungs and commenting on how I was breathing fine, as in I wasn’t wheezing. Uh, yeah, of course! My lungs are fine! It’s my throat! ½ the time they did stick the stethoscope on my neck and listen to the stridor in there as I tried to breathe.
Lessons learned? Don’t take a moment for granted. With the severity of my dairy allergy on top of several other anaphylactic allergies, I really don’t know how long I might have left. It could be days. It could be years. And that thought is scary. But I’m going to make the most of the time I have here. Also, always carry your auto-injectors with you no matter what!! I’m glad I always do. You can never know how mild or severe a reaction will be. So don’t risk it! We’re talking about lives on the line! I’ve also wondered if I had Epied faster in church if I could have avoided having the reaction be as severe and rebound 5 times. It’s possible. But I will never know. I’ll just always have that thought in the back of my head and hopefully it will help me to remember to not be as scared of the giant painful needle in the auto-injector (it really does hurt!) and having to take a trip to the ER.
I’m still recovering. Whether you call it, “almost died”, “almost was intubated,” “almost required a trach,” “nearly didn’t make it,” or something else, the meaning is pretty much the same. And it’s hard to explain what it’s like to be in that position. Also, physically, my body is still exhausted. 6 doses of epinephrine is a LOT to need! And the amount of prednisone I had in IV for the first 48 hours… a lot. I’ve finished the taper though, but still, it’s going to take my body a while to fully recover.
A note on the picture:
The blue ribbon in the picture from the FAAN walk for food allergy. Blue is if you have food allergies, green is for if you support someone with food allergies.
The bracelet is my old one (I just got my new one today). If you have food allergies then I REALLY encourage you go have some sort of medical ID. You never know how severe the next reaction might be and if you’ll even be able to talk even if you’re somewhat conscious. I really is worth it. I will say though that one nurse a few weeks ago made it clear that I needed to wear my bracelet on an arm where it’s the only thing I have on it and it needed to be a brighter color than the purple one… so when I updated mine, I got green. (Ribbit!)
Remember: Don’t wait till it’s too late: Anaphylaxis doesn’t discriminate.
Ever had a conversation like this with someone about one of the items of food on your tray?
“So what’s that?” a TA(not one of mine this year) asked.
“Oh, it’s sunflower seed butter!” I replied with a smile. I absolutely love the stuff.
“so it’s sunflower seed peanut butter!” he said
“NO! It’s sunflower seed butter. Period.” (I was not thrilled with this conversation)
“Yeah, sunflower seed peanut butter. Just like there’s almond peanut butter.”
“uh, no. It’s just almond butter. And this is just plain sunflower seed butter. With no peanuts in it.”
His wife tried to explain my point to him, but he wasn’t getting it. He ended up leaving shortly after, and his wife stayed there for a few minutes. On the brink of tears, I told her that that conversation he had had was not appreciated at all. (She was one of my TAs last year)
I tried to forget the incident, and for the most part I did. But it nagged in my mind. I debated going and talking to him and explaining that my feelings were hurt and I didn’t appreciate the teasing. But a few days later he found me in the lobby in the dorm and asked to talk to me. He apologized for what he had said and said he valued my friendship, and asked that I forgive him. I did. And friendship was indeed restored.
That all happened in the first week here. In the meantime, I got to know how his personality works and he learned what kinds of food-related things not to say and how not to say things. When I needed help with my computer in installing a program, he and his wife washed the table down where they were before I even got there. Things were off to a much better start. Now, 4 weeks later, that friendship was tested. How much did he really value friendship in tough situations and how well had he paid attention?
Sunday afternoon, I had anaphylaxis. It was the 2nd reaction here (had one the first week, and this one the 4th week). And this time, it wasn’t the cafeteria’s fault. It was somehow mine as I made it all myself in my room and it originally was safe, then later somehow got mysteriously contaminated when I ate the last part of it as a snack in the middle of the afternoon during a homework break. And that supposedly safe snack turned disastrous. I knew within the first bite something wasn’t right, but ignored it. Within 5 minutes I really knew something was up and grabbed Benadryl and hydroxzyine. I hoped it wasn’t going to get bad and it was just a false alarm or something that would go away with oral antihistamines. I grabbed my notebook with homework and went straight to the connecting dorm to be with friends and found some of my best friends’ room.
Within 5-10 minutes of talking about what was going on and homework and texting another friend (who was off campus at the moment), I could tell the reaction was getting worse, not better. My throat was swelling and I wanted to cough to clear it out. We headed down to the basement to be in the AC and around some other people. I knew I needed to Epi. And I really did not want to. Though I’ve been allergic for 7-8 years, only the last 1-2 years have I been anaphylactic, so I’m still learning the when-it’s-time-for-epi and when-it’s-not judgments. And did I ever mention my judgment is severely clouded when I’m in the midst of a reaction? It’s like the desire to avoid Epi and a trip to the ER is more important than catching the reaction faster so that it doesn’t get as bad. It’s ridiculous. But it’s also how my brain processes things. And I don’t think any clearer when I just took liquid antihistamine too!
The swelling in my throat went down some so I didn’t feel like I might end up gagging, and that was relief, though my chest wasn’t ready to let up on clamping down on me. And I was itchy. The friend I mentioned above and his wife were down there and they weren’t sure what to do at the time. But later, after it was getting to the point where we didn’t really know what to do, he came and sat on the floor right in front of me and said (this is the basic gist of what he said, there was a part in the middle where I managed to answer several questions about what the symptoms were and what was getting better, worse, or neither):
“I’m going to ask you a question as a friend. Remember, I said I valued your friendship? I really do. I do care about you. And I want you to be ok. I remember you telling me at the beginning of this summer that last summer, when Seth saved your life and you kept insisting that you didn’t want to use the EpiPen, Seth saved your life by insisting that you needed it, and finally you let him. You said that you don’t think clearly, and so I’m going to ask you: is it OK for us to take you to the ER? Do I have your permission to take you to the ER?”
I thought for a moment, and realized that’s really where I should be, and gave my consent. That was all it took. He went out and went to the parking lot and pulled his car up. But that wasn’t the end. He then went and washed not just his hands, but his ARMS UP TO HIS ELBOWS just to make sure he wasn’t going to get any of my allergens on me as he helped me get out to the car.
However, I didn’t exactly walk to the car. After I gave consent, I realized just how bad the reaction was and that it was only getting worse. I pulled out Epi from my pouch I AWLAYS have on me with 2 epipens, Benadryl, a vinyl glove, and wipes, and pulled out the plastic safety cap. But I was still scared. The last reaction I had, I waited too long for Epi, and couldn’t hold the epipen, so a friend had to help. But she didn’t realize you were supposed to swing, jab, HOLD, then remove. So, it was in for less than even a split second. Which meant I needed another shot. That one worked. And then 2 hours later in the ER I needed a 3rd dose. I was limping for at least a week. It h-u-r-t!
So, I decided I wasn’t going to wait that long and use it while I still could do it myself. Still, I hesitated. It’s NOT an easy thing to sit there with friends around you coordinating how you’re getting to the ER while you’re having a reaction and you’re contemplating jabbing yourself in the thigh with a needle. A friend noticed I was hesitating and said to someone else, “I think she’s going to use the EpiPen, but I’m not sure. Anyone know how to use it?” That’s when I realized that somehow, despite my teaching her 4 weeks ago, she didn’t remember. Uh oh! Another friend replied, “no.” And then to me said, “if you need it, then use it.”
“click” went the EpiPen as I jabbed it in my thigh.
I waited, counting to 10 or somewhere around there, and let the spring loaded auto-needle cover push it out. And then I took a deeper breath than I had for the last 40 minutes, and could feel the relief. And the swelling in my throat went down really rapidly and I wasn’t feeling like I might gag. The tension was gone. I did what I knew I needed to do, and I was going to be ok.
The friend was going to have me walk out to the car. But when they helped me up, I nearly fell over from being dizzy and still catching my breath. So, he carried me up a flight of stairs and out to the car. It was faster here for them to drive me to the ER (less than 5 minutes away) than to wait for the ambulance, and I still had another EpiPen with me, and the symptoms were resolving, so we had a bit of time to make it to the ER. They took me right back, despite there being a line at triage when they heard the word “epipen”, and I was back in a room within a minute or two.
Initial exam things were good. But then, while they were starting to get the IV in and get me checked in, the reaction started coming back. Oh if only I had Epied right off when I first realized this reaction was going to be bad! Maybe I could have prevented the reaction from coming back again! Alas, I didn’t. In the time it took the nurses to get things set up and all and then the doctor came, I could tell the reaction was definitely coming back. My throat was swelling again. And my chest was getting tight. And I was getting itchy again.
“Say ‘aaahhhh’” the doctor said.
“ahh” I said weakly
“Ahhh” He repeated
I tried again, but without any more success.
He had me try again 2 more times before asking, “does your tongue feel swollen?”
“uh, I don’t know. Maybe?”
“kind of like it’s thick?”
“somewhat. My mouth feels more swollen than my tongue though.”
“yeah, your mouth and tongue look swollen, I’m having trouble seeing the back of your throat.”
After a quick listen to my attempt at taking several deep breaths he went off to put the meds in the computer and within minutes my nurses were back with them. I was so glad when they came back, I was starting to get desperate, my lungs really wanted to try to clamp down on me and my throat was also increasing in swelling. The first med on the list? More Epi. Ugh! But I needed it. And I wasn’t about to fight the doctors who were trying to keep the swelling from obstructing my airway and having me turn blue! Then a neb was in order as were IV prednisone and more Benadryl and fluids. Within seconds of the Epi I could breathe full deep breaths. I took several and relished that feeling. Ah, it felt good! And my mouth and throat backed off on the swelling too. Certainly felt nice! It didn’t take long for the IV Benadryl to kick in though! My body was so worn out, that I was dosing in and out. 2 friends came to sit with me for 2 hours and I really don’t remember much from those first 2 hours. They later told me they had sung some songs, but I really don’t remember that! The nurse came to check in on me several times, but let me be till I was more awake. I was stable for the time being.
The 2 friends headed back to campus to go get dinner and it wasn’t long before that friend who had originally teased me 4 weeks before and then mended the friendship, was back with 2 other friends to sit with me for the next 2 hours. After that transition, I something else kicked in and I wanted to throw up. So, IV anti-nausea meds. That definitely helped. ☺ But then my mouth started swelling again, so they gave me another dose of IV Benadryl. Finally, I was stable and remained stable. They finally discharged me, and I got back to the dorm somewhere around 4-5 hours after we left the dorm.
If I know I need Epi, don’t hesitate. The faster I use it, the less likely I am to need even more doses. And the fewer Epis used, the less I limp. The time with 3 epis? Limped for over a week. This time with only 2? Limped for 3-4 days. Times when I’ve only needed 1 epi? Limped for 2-3 days at most. And we are also talking about my life here. I’ve never had a doctor tell me before that he was having a hard time seeing my throat because my mouth and tongue were swollen. That’s not a good sign!
And also importantly, don’t write off people as “food allergy enemies” just because they’ve teased or joked about your food allergies and your food once or twice. Sometimes they don’t realize that your feelings are hurt. They may just not realize that they need to be more sensitive to certain things they talk about. And now, I consider that friend a real friend who’s tried and true and really DOES care about me and really DOES value my friendship. And I’m thankful for him (and his wife). And I’ve gotten to know them in other ways beyond food allergy stuff because we’re friends, and the food allergy stuff doesn’t get in the way. It’s also a relief to know that they do care about keeping me safe. They’re the only ones who wash their hands before helping me out with something or cleaning the table before I come over for computer help.
And I’m increasing awareness in the not so fun way. It stinks to have an anaphylactic reaction. Really does. But, it does remind those around you just how allergic you are. It seems that at every. Single. Meal. Since the reaction, I’ve had at least one person ask how I’m doing after the reaction. Some heard through word of mouth. Some saw it take place. And some, I really have no idea. I sat down to dinner and someone asked a friend (who happens to have food allergies too, just not as severe as mine) “so are you the one who’s super allergic?” “Uh, that’d be me” I said. “Oh!” They replied. “How are you feeling?”
And at dinner tonight another friend asked if I had actually had an allergic reaction. Yes, I did. (I’ve also gotten in practice explaining what happened and about food allergies in ASL as several friends here are Deaf)
I’ve gotten so many comments about food lately that really, part of me just wants to go hide. Or go to a totally “MC safe” kitchen and bake and bake and bake. I really don’t get much chance to do that here because of homework. And I miss it. As soon as I get home, I’m going to get into a massive baking mode and bake and bake and bake. I seriously miss using the oven and mixing gluten free flours and other ingredients together! And baking with my little sister is also something I miss.
But, in the meanwhile, I’ll keep taking one day at a time. I’m ½ way through the semester here and I’ll make it to the end. I don’t know if I’ll have another reaction here before I head home (I sure hope not!), but sometimes I just can’t control that. I do my best, and try to stay safe, and trust that God’s plan is ultimately better than my own snapshot of the full-length movie. You know how when you pause a movie you often catch people with some crazy facial expression or something? Well, life is like that too. If we focus entirely on just the one frame instead of the whole movie, everything just makes no sense and seems totally crazy and blurry. But when you watch the whole thing, it fits together, especially when God is the movie director!
I’m back in ND at SIL-UND. It’s 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 come here to be an on-campus student for 2 months. The “SIL community” is rather unique here. Because there are parents who come to take classes here, they usually come with their family… teens, kids and babies included. And due to some other things I’ve ended up with my room in the kid’s wing. While this means I get AC and am closer to classes (especially nice as I’m in a walking boot/cast for a few more weeks because of a stress fracture), I do hear babies crying at random times of day and night. But I’m ok with that.
Another thing about the SIL community is that total students, faculty and family total is around 200. We take up about 2 dorms. And we do eat in one of the main cafeterias. But more on that later. Knowing that I’m in such a close-knit community I’ve been trying to do everything I can to set plans in place and alert the right people and teach the right people how to use my EpiPens and when. So I had a talk with the director about how to do this best. Should we mention the fact I’m deathly allergic to milk and peanuts in the orientation meeting before registration? Or some other method.
We decided that the best way was a combination of 3 ways. First in the first chapel meeting to reach a good portion of the “SIL community”. Second in the newsletter that goes out this week. And third, by posting signs around key areas of the dorm that are public and are where people tend to eat food while studying. And while a good portion of keeping myself safe is MY responsibility, there are things that others can do to help and make this summer a safer one for me.
As I was talking with the director, I forget who of us said it, but it basically the phrase that has stuck in both of our heads is,
I don’t need sympathy, just cooperation.
Too many times when I tell people about my allergies and they say something to the effect “oh, I’m so sorry! That must be horrible!” I get that you feel bad for me. But really, that’s not accomplishing anything really helpful! What I need is for you to clean up after you eat peanuts or a PB&J sandwich or after you go snacking on a cheese stick that you’ve had fun “stringing” as you ate it, or even your sandwich that had cheese in it that you put on the table next to you between bites as you worked on your homework.
Oh yeah, and professors, this also applies to you. Please don’t go eating or snacking while grading my homework… especially not as you’re eating peanuts or cheese.
So this morning in chapel, the director talked about some stuff and the challenges of living in community and tied my food allergies in. People were listening, but I think when he said, “she almost died last summer”, they got it a whole lot better.
Then, at lunch I’m sitting with some other SIL students and one of them is a childcare worker and she was talking about an idea she had for a food prep activity for the kids to do. “
Oh, what’s it called…. ants on a log!”
“oh yeah, celery, with peanut butter and raisins!” I said.
Then her husband says “oh but wait, we can’t use peanut butter. There’s someone who’s allergic to it.”
Curious as to not having heard of a kid here with the same allergy as myself I asked what kid was allergic to peanuts.
“oh, no, it’s not a kid,” her husband replied, “they just said this morning that there’s someone here on campus who’s allergic to peanuts.”
“oh, that’d be me!”
“ooh! I’m sorry!!”
That’s ok. But thank you for your cooperation! I never even asked you to NOT use peanut products, but you decided you weren’t going to use peanuts in your kids snacks just because it was asked in chapel this morning (for those who go to chapel) that if you do eat peanuts, please be considerate and clean up after yourself.
It’s looking like a great start to the summer. I’m working on getting all the necessary contacts in case of emergency that someone would be able to come to the ER with me (who has a car so I could get back to campus afterwards) in case of a reaction. And then training all my profs and TAs and close friends (and other random new friends) how to save my life with the EpiPen. And I’ll share how the dining hall has been making amazing improvements and is just totally awesome in another post. But for now, just remember:
I don’t need sympathy, just cooperation.
This week is FAAW ’12, Food Allergy Awareness Week, 2012. I was going to talk about something totally different, but after a conversation at the dentist office this week, I thought I’d share the answer to a very frequently asked question instead.
The other day I had a dentist appointment. All should be pretty simple, right? Well, it was just a kind of crazy day and totally forgot to brush my teeth before going. Oooops!! I get there and they were about to give me a toothbrush and toothpaste but then the assistant said she’d just give me some mouthwash and it’d be fine.
“Wait, can I read the ingredient label?” I asked her before she poured it into the cup.
“WHY?” She responded, rather surprised and almost offended.
“I have food allergies” I explained.
“Well there are no nuts in here.” she told me as she handed me the bottle.
I read it quickly (wondering why they put so many strange ingredients in it) and okayed it, handing it back to her.
“What are you allergic to?” The assistant asked me, more curious now, as she handed me a cup of mouthwash.
“Dairy, peanuts, bananas, strawberries, a few other things and I have celiac disease.” I told her.
“Wow… what DO you eat?” She asked.
“Everything else!” I replied cheerfully.
“But there’s not much left!” She countered.
“Oh yes there is! I can have veggies, meat, most fruits, and I can bake a lot of other stuff. There’s plenty I can eat!”
“But that’s still not much!” she countered again.
We discussed the growing abundance of gluten free foods in stores now days and how I love baking pretty much anything. And then I also said that next time I’m around, I’ll give them all some of my foods so they can taste and see that I DO have plenty I can eat.
But, it’s not the first time this kind of a dialogue has happened. It’s happened countless times. Friends at church, random strangers I meet, relatives, and well, pretty much anyone who doesn’t have food allergies themselves or know someone close to them who does. Last fall I got to go to Europe and visit family, and my grandmother was really worried at first what I could eat. But by the end of the 10 days there, SHE was the one telling others that, yes, I have food allergies and have to follow a “special diet”, but that I actually CAN eat a LOT of things! Fish, veggies, meat, potatoes, and for the things that I couldn’t have, there were pretty often substitutes available. I baked gluten free bread there. I also made crepes, pancakes (hehe, yes, I made a totally American food in France!), found soy yogurt in the main (GIANT) supermarket along with dairy-free margarine, my favorite baguettes from Schar, chocolate, cake and so, so much more.
While I couldn’t have the yummy looking dish she made with cheese nor her awesome soup (cross contaminated), I could still make my own versions that were pretty good.
So, for everyone who wonders, what CAN I eat, here’s a bunch of the stuff I can have… I do not apologize if I make your mouth water
This month NFCA is having a gluten free college bloggers month with guest posts from 8 bloggers, 2 going live each week. I was honored to be a part of the 8, and my post went live last week. I shared the reasons for why I am an online student, and the story leading up to that decision. Mainly, it had to do with the cafeteria being unable to really handle food allergies, and the Student Development Office’s unwillingness to even let me try to prepare all my meals myself. But you can read the whole post here.
I noticed some people commented on the NFCA facebook page about how even though it was great that I was able to take classes online and even get a full degree online, that I was missing out on a very important aspect of being in college: the “college experience”. This consists of making friends, going to classes, and having a social life there and pretty much everything that goes along with being on-campus. I know that this isn’t usually what I talk about on this blog here, but I’m going to share some of the things that have happened in the last year and half for which I have been especially appreciative that God put me in an online program at just that moment.
A lot of people thing that the college experience is one of the most important things to being in college. I beg to differ. For some people it might, but not for everyone. And, I did get my full first year of college as an on-campus student and got to experience campus life. It was great, for the most part. And I’m thankful for my time there as I met 2 of my best friends I currently know there. However, that first semester I did online, was a semester I didn’t know was going to be my last semester that I got to see and hang out with my very best friend whom I had known for over 16 years in my neighborhood at home. Just after finals week, she had a major brain bleed, and was unconscious in the neuro ICU for a month, and after another bleed leaving her brain dead, her family chose to take her off of life support.
If I had been on campus that semester, I wouldn’t have gotten the chances to hang out with her several times that semester and even drop by her house just for a much needed hug. IMs would have been much less frequent and I wouldn’t have gotten to go to the hospital to see her that very first day after she had emergency surgery in the middle of the night because the campus’ semester ended a week later.
Also, if I was an on-campus student, I wouldn’t have even 1/2 as much time for baking. Campus life is very different, and free time…. is even harder to find than it is as an online student. And for me, baking is a stress reliever.
But, for those of you still worried that I’m missing out on something super important to college, I do go to a different school in the summer where I’m on-campus for 9 weeks. However, with that said, I’m extremely thankful that it’s only for 9 weeks. Because in addition to not being able to eat gluten, I’m also deathly allergic to milk and peanuts, being on-campus is a much harder thing for me now… and 9 weeks is about all I can handle. After I get home, I’m more than happy that I don’t have to spend 9 MONTHS of the year dealing with a college cafeteria. Though UND does a fabulous job of feeding me safely in the summer, it is always a relief for me that I’m not there for 9 months every year. I could probably do it, but it would result in a lot more stress and possibly several reactions each semester. Mistakes do happen (and did happen this summer), and we’re talking about my life here. Just one wrong bite, and I could lose my life. If it was just gluten, I might handle it a whole lot better. But that’s not how things are, so I deal with them as they are…
One day at a time.
Oh, and while you’re reading my guest post, go and check out the other posts from the other bloggers as well!