It all started when my sister came to me saying she needed an ugly Christmas hat for her art class this week. We did a web search for ideas and stumbled across a Rudolph hat made using gloves for the antlers. A search in the coat closest revealed a pair of old blue gloves I don’t wear any more and a purple knitted hat my sister never wears. We grabbed the box of craft pom-poms and found a needle and thread and some stuffing.
I went downstairs to grab something and when I came back up I heard this automatic voice saying “place black end on outer thigh and press and hold for 5 seconds… *click* 5…4…3…2..1… Injection complete… This trainer can be reused…” Yup. My sister had found a trainer Auvi-Q on my floor (haven’t quite fully unpacked from the Teen Summit last month) and was “injecting” poor Rudolph.
We concluded that Rudolph must have rubbed his antlers on an almond tree, thus his antlers started to swell and turn blue, he broke out in hives (we added little red pom-poms) and then struggled to breathe so he turned purple. I started singing,
“Rudolph the red nosed reindeer, rubbed against an almond tree,
He started to break out in hives, and then he struggled to breathe…”
We were laughing as we worked and sang till all of a sudden my sister asked me,
“Why didn’t Rudolph get better when I injected him with the Auvi-Q (she used a trainer but pretended it was the real thing)? He’s still really purple.”
Folks, THIS is why I have the motto:
“Don’t wait till it’s too late: anaphylaxis doesn’t discriminate”
I explained to her that if you don’t use epinephrine fast enough then after you reach a certain point it is too late and doesn’t help. The sooner you use your EpiPen or Auvi-Q the better chances you have of staying alive.
Let me rephrase that. Yes, I know it can be scary and sometimes we don’t want to think about it. But yes, if you delay epinephrine, you are greatly increasing your chances of dying.
I know the excuses.
“But am I really bad *enough* to use the epinephrine?”
“If I use it then people are going to think I’m over reacting”
“I don’t want to be an inconvenience”
“Are the EMTs, doctors and nurses going to believe me?”
FORGET WHAT OTHERS MIGHT THINK!!! Just use the epinephrine and you can deal with the responses of those around you later when your body has stopped trying to kill itself! (And I’m preaching to the choir here)
So, let’s not be like Rudolph who rubbed up against an almond tree and then turned purple because he couldn’t breathe.
USE YOU EPIPEN/AUVI-Q BEFORE YOU GET TO THAT POINT!!!!!!!!!!!
If you’ve read a good part of this blog you’d know that I have a younger sister known as Chef Flower and she is a student in Chef Froggie’s Gluten Free Culinary School. Well, the culinary school has been on a long break, but Chef Flower has still been learning. We come back to bring you a new post from the school, one where we especially needed Chef Flower’s help for. A product review.
Part of being a student at the culinary school involves not only learning baking stuff, but learning how to write stuff about what you bake and cook and taste. A few months back someone from Enjoy Life Foods contacted me asking if I’d like to try their new Decadent Bars and write a review on them. I told them that sadly, I’m allergic to one of the ingredients in them, but that my sister isn’t and she would be glad to try them. A week or so later I received this package and Chef Flower excitedly brought it to me and asked if she could open it. “Well actually, yes, you can open it because it’s actually for you.” She was more than thrilled and surprised and couldn’t wait to try the bars.
Unfortunately, she was sick at the time, so I didn’t let her try them till her taste buds were working normally again. And then our mom heard about the bars and insisted she wanted to try them as well. So, both tasted them, analyzing them, thinking about how to word the feelings coming from their taste buds, and then writing them up. Things have been crazy around here and I’ve had 1/2 of the text on one computer and the other half on another till today. So, without further introduction, I present you with Chef Flower’s analysis!
It tastes like cherry pie with cinnamon. Though, after you let it sit in your mouth, you feel a grainy texture, kind of what gluten free pies taste like. [Chef Froggie’s note: not all gluten free pies taste like this… just she hasn’t had the really, really amazing crusts apparently… guess I’d better work on that!] Not does it just taste like cherry pie, but it smells like cherry pie! It does taste good but it’s not my favorite.
I am not that fond of chocolate [Chef Froggie’s note: that was till a week after she wrote this, now she has fallen in love with chocolate unexpectedly], but this chocolate sunbutter bar is the best chocolate bar I have ever had! With the taste of sunbutter I also am not fond of peanut butter or sunbutter, but in this case, its delicious! With a nice and crispy taste!
Even though I am not fond of chocolate, I love S’mores. And even more, what is even better is Enjoy Life S’more bars. I like the chocolate taste with the crunchy graham cracker taste, though I don’t taste the marshmallow that much. I compared this to the Quaker brand that had artificial ingredients in it. I did not like it as much as the Enjoy Life ones. This chocolate marshmallow S’more bar is sooo good!
Cinnamon bun bar:
Very good, but it does not taste like a cinnamon bun. It tastes more like a cranberry bar. The texture is very different. This bar is good, but not as good as the S’more bar!
Now, remember our mom insisted she wanted in on the action. My mom doesn’t have any food allergies (nor does my sister), so they came at it from the view of some used to “regular” food.
Overall, very good. And I don’t usually like cherry deserts. But the balance of ingredients is very good. When you start eating you can tell the cinnamon. Though when you finish eating there’s something like a grainy/powdery texture. But I would definitely go for more.
I don’t like it at all, I can’t explain it, but it might be that it seems too dense for my liking.
I like the texture. I like the taste. I like the color. It’s perfect.
Very good texture. Very good taste. Overall very good product.
In the end, Enjoy Life Foods, I think your ELFs did a good job and really made some amazing stuff!
No, I don’t mean a soup to go with a sandwich. I mean a soup made out of a sandwich. And by that I don’t mean a soup with chunks of sandwich in it, I mean a creamy, really delicious, soup made entirely from a sandwich. The best part? It not only tastes like a sandwich but it’s ready in minutes.
Due to the fact my esophagus has taken offense for some reason at solid food, I’ve been on a non-solid food diet for 8 weeks. Actually, today is day one of week 9. It does drive me crazy because I miss solids. I can’t go pick up a safe snack or treat at whole foods and eat it on the way home. I have to wait till I get home, and throw it through the blender first. There’s no more snacking as I cook an MC safe dinner. And, menus have changed. Some things I just don’t want to eat to be quite honest.
When I first started throwing things in the blender 2 months ago, I quickly learned that not everything tastes good pulverized together. Yes, I LOVE quinoa, but, I do not like the taste of it with other things in the blender. You know how some adults will tell picky eaters, “why do you have to separate everything when you eat it? It all gets mixed together in the stomach!” Well, here’s the answer:
The stomach doesn’t have taste buds!!
One dish may taste great together, even mixed together, but when you go to throw it in the blender, it really doesn’t taste good. So, I’ve set out to maintain some degree of sanity in the whole not-allowed-to-eat-solid-food thing over the last 8 weeks and I’ve been doing some kinda crazy experimenting here and there and discovered that some of my favorite foods in solid form really do taste really good as a creamy puréed soup! When I suggested some of them to my best friends they both looked at me like I was crazy. But I was desperate for some variety in what I was eating!
The first try was pizza. It was actually really good!!! Then I tried cinnamon buns with ice cream floating on top. That was really good. Brownie soup with ice cream (or without) was really great too. Then I took bacon, potato, Daiya cheese and some coconut milk. It. Was. Amazing. At another time I’ll post the recipe for cream of bacon soup. I also made chocolate cereal soup. That was really good and nice and creamy. But today, the star of the show would be my favorite.
Sandwich soup. Yup. It’s really simple.
You can prepare the sandwich like a regular looking sandwich like this, but it is totally NOT necessary. I usually just stick the stuff straight into my vitamix.
1. Tear/cut up the sandwich material and toss it in your blender.
3. Turn blender on low and slowly increase the speed till you get to the very highest speed. Leave it on high for a minute or two.
4. Pour, serve & enjoy.
Now, a few notes. I’m sure you all are wondering what it tastes like. Really, it tastes like a sandwich! I’m totally serious!!
However, unless you want to make tomato soup (which is really good too), don’t put tomato with the sandwich. The tomato has a tendency to overpower everything else when thrown in the blender so if you want to taste everything else, leave it out.
Also, I haven’t tried mustard, pickles and the like. But, I bet they’d make a good addition!
And, lastly, those of you who know me know I love frogs and know about Super Froggie and the Frogland gang (kid frogs with food allergies (and without) who help each other out and learn from each other). I love working on stuff related to them as a way to encourage others. But a friend decided to ask for a drawing of Super Froggie, with his cape and all (yes, including his belt and epipens!) for some secret project she was working on to encourage and cheer ME up as it’s been rough with not being allowed solid food for so long! And in the mail yesterday came THE most AWESOME glass I have ever seen which she had custom ordered from Starr Parnell. (It looks kinda not straight but that’s due to the angle I took the picture at. In real life it’s perfect). It was a complete surprise. But it was perfect! There is no way I can’t help it but smile when I drink out of this glass, even when I’m really not feeling great.
“Oh say does that star spangled banner yet wave, over the land of the free, and the home of the brave.”
It’s the last part of the last line in the US national anthem. But what does the national anthem have to do with food allergies? Looks like it’s time for a short history lesson.
Back during the war of 1812, in 1814, the British came and burned Washington DC. Then, they dropped off soldiers at North point and then sent their cannon ships up the Chesapeake Bay to Baltimore. De to the earthworks the citizens of Baltimore had dug, the soldiers on land couldn’t get to Baltimore without help from the Navy, but, the Royal Navy couldn’t get into Baltimore without first passing by Fort McHenry. On September 13th the ships stopped a certain distance from the fort and started the bombardment. Just before all this, a lawyer (Francis Scott Key) sailed toward the ships in a boat with a white flag to discuss the release of a prisoner of war. The release was accepted, but neither Key nor the prisoner released were not allowed to leave the ships till after the battle. It was from this location that Key watched the fort that protected his city be bombarded.
All day and all through the night, the Royal Navy sent bombshells at the fort as well as rockets (these rockets gave off red light, hence the line in the song “rocket’s red glare”). The fort’s cannon could not fire back as well. They were basically at the mercy of the British bombing. They tried to fire back as best as they possibly could, but they didn’t manage to take out the Royal Navy. Still, they were brave. They stood their ground. And they never gave up, even though a storm soaked them all night long as the bombardment continued.
Finally, in the morning, the Royal Navy stopped firing and there was silence. The air was covered in smoke that was hard to see through. As Key looked at the fort in the early light of dawn through the smoke from the cannon, he wondered what flag he would see. It was the American flag. And it wasn’t just a little flag, the troops at the fort raised up the large flag (which you can now see in the Smithsonian), and it was clear that the victory was won by the troops at Fort McHenry. The British sailed away, and the US was spared from the Royal Army burning Baltimore and working their way up North through the rest of the states. Key, penned a long poem, which later got put to music, and grew in popularity, and then officially became our National Anthem.
Now, back to how this relates to food allergies. I’ve grown up singing it. But the part at the end that always seems to stick out is how America is the “land of the free”, so I never really thought much about the next few words, “and the home of the brave.”
It took incredible bravery to fight in that battle when it seemed hopeless. The US’ cannon was no match for the Royal Navy’s cannon and rockets. But they didn’t give up. And they kept going despite the odds being against them. The pouring rain and storm. The smoke filled sky. Having less ammunition than the Royal Navy. Having less experience. Being outnumbered. But still, they held their ground, and they stood firm. And their bravery is now of what we sing in our anthem.
Those with food allergies understand well this feeling. Sometimes it seems like they are doing everything they can do, and they are still overwhelmed, bombarded with feelings of fear, doubt, “what ifs”, of possible reactions and more. Staying alive and staying sane requires bravery. But for them, giving up is just not an option. For me, despite having been through so much, having nearly not made it several times, giving up is not an option. I’ll keep fighting till the day they find the cure.
America is not remembered and defined by all the battles fought and every challenge and obstacle faced (if you study history there are a LOT of battles that have occurred since the American Revolution), but by the fact that while not every individual battle was won, they never gave up. It is their courage and bravery that is remembered and honored.
And, like that, so are those with food allergies more than every food they can’t eat, more than every reaction they’ve had, more than every challenge they’ve faced, but they are heroes because they never give up, they have courage, hope and bravery.
In math, ‘i’ is the square root of -1. It is an imaginary number. Remember, if you multiply two negative numbers together, the end result is positive. Same happens when you multiply two positive numbers together. When you have a square root, you have to multiply it by itself in order to get the perfect square and remove the annoying square root sign and get a whole number. Well, here is the problem. There is just no way that you can multiply two positive numbers to result in a negative number. And you can’t do that with two negative numbers either. This is why the square root of -1 is an imaginary number.
It doesn’t matter what insanely high power you raise ‘i’ to. You can raise it to the largest number you can fit on your piece of paper. But in the end, you’ll just end up with one of four answers: i (what you started with), -1, -i (the negative of what you started with), or 1. Which really, is a pretty small number, especially if you compare it to the power you had raised ‘i’ to.
Imaginary powers and fears may seem huge and overpowering and overwhelming. But often in the end, when you simplify and reduce it to more common terms, you realize it’s actually not as scary as it had seemed in your imagination.
Living with food allergies can be scary. And that’s normal. But it is easy to let the fears get multiplied exponentially and let your life be controlled by fear of the ‘what ifs’ and the unknowns. Then there is the opposite extreme of throwing caution to the wind and thinking you are invincible. Neither of these are good places to be. But finding a healthy balance in the middle is hard.
But when things see too scary or something, think more deeply about it and reason through it and you’ll probably notice that the situation which had previously seemed like a huge storm and mountain looming ahead isn’t quite as scary. Simplify the math equation into something that is a lot easier to understand and not as scary.
There are situations where it is just not safe to do something or go somewhere. But often if you take the right precautions and keep your epinephrine auto-injector with you, keep your wits about you, make sure others know if you’re having a reaction and take quick action if you do have a reaction, you don’t have to live in a bubble all. the. time. And living in a bubble can foster even more exponentially increasing fears. For some people, it just isn’t safe for them to go outside of the house. But for the majority of people, they don’t need to stay hidden away kept away from every possible trace of their allergens. So, talk with your allergist if you have concerns about being super sensitive to allergens. But fear doesn’t have to rule your life.
Three years ago I had just finished my freshman year. On campus. And I had loved it. Uh, yes, I had 5 ER trips over the two semesters. Once because I didn’t know that people actually mop stairs and I didn’t see the yellow sign that said “slippery when wet” and fell down a flight of stairs and missed 2 1/2 days of classes. And the 4 others were due to asthma and allergies. Over the first summer break, I was hopeful that I could go back there in the fall. But it became clear that wasn’t going to happen. I begged. My parents vetoed. And in the end I was thankful for their veto. As much as I loved the school academically, it didn’t work out great at all when it came to dealing with the dining hall and dean of students regarding my dairy allergy. In fact, it was pretty much a nightmare.
So, I switched all my classes over the summer to still taking them with the same school, but all online as I transitioned to applying to Liberty University’s online program (which is awesome btw!). I changed all my classes to different classes that i could take online. All except for one that was at the beginning of the semester. I can’t even remember the name of the class. But I’ll never forget the experience. We drove for hours and hours out to Colorado Springs for a Deaf convention. I loved every single minute of that trip. I was surrounded by ASL, and there were only a few people there who didn’t really know ASL, so I could sign to pretty much everyone. And I learned a ton on that trip. When we got back to campus, I was sad that I was leaving the next day to fly back home, but the prof asked me to come to the ASL 3 class I would have been in had I remained on campus that semester. It felt a bit awkard at first, but I sat off to the side downloading pictures to my prof’s computer as I watched her teaching class and joined in at times.
She handed a foam squishy ball to the two students in the class then handed one to me. I was speechless. And thrilled. And I watched as she explained in American Sign Language the meaning behind the ball that to most people would mean summer fun with water games.
This isn’t the exact word for word way she explained it (its been 3 years!) but the same general idea. She explained that we had all been through 2 semesters of intense ASL classes with class 4 hours a week and that’s not counting our own practice time and other events. Now, we were veterans in a way. We had survived year one. And now there were new students coming in for their first year. During our first year, we had soaked in information and signs and facts and learned and learned till our brains were overflowing as we couldn’t hold it all in. Now, it was our turn to take the stuff we had learned and squeeze it out and help the new students and teach them the things we had learned.
In other words, our brains are the sponge ball. We had soaked up information. Now it was time to squeeze it out to help others.
But it doesn’t end there. Because as we are squeezing that ball out, we still kept continuing to learn, and thus refilling the sponge with water to keep teaching and helping others.
Because when you think of it, if you learn a bunch of stuff, but don’t use that to teach others and help others, what good does it do to keep it all to yourself??? And, if you only learn a little, you can only help others a little. But when you keep learning, you expand and what you’re able to do just grows by leaps and bounds.
And, really, that’s the fundamental reason I started this blog. I’ve learned a lot through life experiences. And I want to help others out with what I’ve learned. I’m not a doctor. I’m not an expert. I’m not a parent or relative of someone with food allergies. I am someone with food allergies. I’m only 22. But that doesn’t mean I can’t do little things to help change the world!
So how are you going to take what you’ve soaked up and use it to squeeze water into someone else’s life to help them out or teach them something you’ve learned?
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!
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.
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.