It’s no secret that I have food allergies and asthma. I’ve also mentioned in my last post that I have adrenal insufficiency (I was diagnosed about 3 months ago). It messes with my energy and GI tract. I’ve been intubated because of a nasty reaction back in May. I broke both elbows 6 months ago. I have plates and screws in both elbows. And I have an extra bone that grew in the left arm in the middle of muscle which keeps me from being able to rotate my hand to put the palm up.
Daily life is not what the “average” 24-year-old would consider “normal”. I face roadblocks All. The. Time. It’s exhausting. But, it does make me think even more. I encounter roadblocks. Setbacks. Boulders. Walls. Detours. Rivers without bridges.
You have to think of ways around them. Ways to climb walls that seem impossible. Ways to detour. And you learn to think differently. You come up with new ways to solve problems. And honestly, while I was already creative before, having to think and work around problems all the time, I’m always in problem-solving mode.
But that problem-solving mode comes out in more than just handling the health challenges: it comes out in my sewing. I don’t just sew to sew. I like to sew things that solve problems. I’ve done this for several years. I like to take a problem, and come up with a fabric solution. I do it with things for my sister’s dog. I do it with the problem of cold toes in a cast. I do it with cold legs in winter, and asthma flare-ups due to cold air in winter. And I like to make things look fun and cheerful and encouraging. Oh, and I love frogs. 😉
So, I’ve started taking the things I make and design, and I’m now selling them! My favorite part is that I make things custom to the client. In the sewing industry, there is a lack of custom things. So, I take my love of math, and critical thinking and figure out how to take measurements from people and tweak the designs I’ve made (especially with dogs) so they fit properly.
I honestly love sewing. Love, love, love. It’s part of what keeps me sane. That and Amelia (my bike). Being able to unleash my creativity and create things that leave even doctors and complete strangers excited and wanting to buy a pair of fleece leg-warmers, gives me something I can do that’s positive and encourages and makes people smile.
So, you should come check my site out… and I would love to get feedback and ideas on what you would love to have made.
It may seem ironic that I love my bike (Amelia) and that I’m also asthmatic and have adrenal insufficiency. So, why do I ride my bike? There are several reasons.
First off, riding my bike is fun. Really. It is! The wind on your face, the thrill of cruising faster than you can on foot with less effort. Yes, it can be tiring, but it definitely is fun.
Second… It’s become part of who I am. I unfortunately am known by a lot of people as The Girl Who Is Allergic To Everything (even though I’m definitely not allergic to every thing)
…and The Girl Who Is Always Sick. I hate those labels. And biking makes them go away, at least for the time I’m riding my bike or wearing my helmet in a store.
People see me wearing my helmet when I’m going places and they see the bike and strength rather than a girl who has almost died over a dozen times in the last year alone. When people see me now they ask if I biked, or how the biking has been or where I’ve biked lately, instead of constantly being asked if I’m still sick or if I’ve been feeling better after being in the hospital yet again.
And lastly, it’s actually saved my life. Sure, I’ve almost gotten run over by drivers who weren’t paying attention, and I’ve nearly fallen off several times because I had to make a crazy sharp turn unexpectedly or brake suddenly, but biking really has saved my life.
Back in May I was intubated because the docs couldn’t get an anaphylactic reaction to stop and things were starting to go downhill really quickly. But since then, I’ve narrowly escaped intubation 4 other times. There seems to be this band of NinjaNuts that follows me places and sneaks out and attacks when I don’t even realize it.
If I didn’t have a higher endurance level and breathing reserve from biking, I probably would’ve ended up intubated all 4 other times. And I can tell you that recovering from intubation is NOT easy nor fun. It sucks. But having the extra physical strength and endurance from regular exercise really helped not only in avoiding intubation and staying alive, but it also really, really helped me to recover from all the allergic reactions I’ve had. 3 weeks after I was hooked up to machines breathing for me, I was back on my bike. I was going slower than before, but I was back on my bike. I had my sanity back too by getting back on my bike. And while I ended up in and out of the hospital every few weeks ever since, it’s the biking that has kept me sane and kept me going, emotionally and physically.
I regularly encounter people who see me wearing my helmet when I’m shopping or at the doctor’s and they tell me that I’m doing a good thing to bike and that they couldn’t ever do it. Funny thing is, even just 2 years ago the idea of biking places was simply just a dream for some day in the distant hopeful future. I didn’t think I could do it. But I am doing it. I don’t have a choice. I don’t have a car. So most places unless someone can give me a ride (which is rare), I bike or use a combination of biking and riding the bus (the busses have racks on the front for bikes) and metro.
My old boss told me that lugging my bike around everywhere is like having to carry around a baby and that it makes it so much harder to go places. Actually not! Half of the time I’m riding my bike I’m coasting… which last time I checked, you can’t coast while walking. So it actually takes less energy to bike places than to walk.
I’ve learned to listen to my body and not push it too far. Some people believe that you need to push yourself beyond your limits in order to get stronger. Sometimes it’s not true. Sometimes getting stronger is a matter of staying within your physical limits so you don’t hurt yourself by overworking your immune system or lack of adrenal function. And by still exercising, but staying within your physical limits, you become stronger and can slowly increase your physical activity level because your muscles are better able to handle it.
Exercising with chronic illness and being prone to injury isn’t easy. But it’s worth it. It’s not a matter of pushing beyond your limits, but of actually exercising. Whether it’s walking, biking, running, swimming, whatever: do it. Yes, you need to listen to your body and not push too much and take rest days when your brain just really wants to go for a run or a long ride.
So, if you think you can’t bike because you’re asthmatic, that’s no excuse. It’s also no excuse that you’re not in shape. Exercise is really beneficial. And it’s fun. So, I’ll end with what I tell people when they tell me a list of excuses for not biking.
I’m asthmatic. I’ve been intubated and had machines breathing for me. I’ve fought for my life more times than I can count. If I can do it, you have no excuse (unless your doctor told you not to… and even then you should go beg them to let you do it anyway). Just remember to wear a helmet and that it’s ok to stop and catch your breath and to walk your bike up hills. I still do that on some hills. If you’re asthmatic, take your meds before and keep your inhaler on you.
And, you don’t have to push yourself till you pass out. If you’re asthmatic, take your meds. Take it one step at a time. You never know if something is going to happen down the road that will require extra physical and mental endurance that biking will help you prepare for.
Just put one foot in front of the other and keep pedaling. And it’s totally ok to realize you’re too wiped out partway through and catch a bus or take your bike on the metro. I do it all the time.
Oh, and if you’re a driver, please leave 3 feet when passing a bike on the road! Bikes are allowed use of the full lane.
For years I’ve been told that my fear of food is causing allergic reactions to be worse than they otherwise would be, and, that my fear of having a reaction, or the memory of a really scary anaphylactic reaction makes the current reaction worse. The thing is, that’s a catch 22. When you’re body is swelling and you’re struggling to breathe, it IS scary.
And when you’ve been through such traumas as not being able to breathe, EMTs shoving a tube down your nose to make an airway, EMTs shove something over your face to try to push air down your airway that’s 99% swollen shut and hear them saying you’re turning blue and get ready to intubate you… when you have an ICU team worried about you and decide to intubate you to give your body rest and fight for you while they put you on an epi-drip… when you have an ICU doc tell you in the middle of the night they’re either going to have to increase IV med doses or intubate you… the memories of being rushed to the ER in an ambulance with lights and sirens and several EMTs in the back fighting to keep you breathing… yeah, it’s scary.
Some days, memories can flash back and overwhelm you with fear and can freeze you and make you feel helpless and hopeless. It takes the joy out of life. It sucks the life out of you.
In Harry Potter, there are characters called Dementors. They are evil looking and basically suck life out of you by making you relive your worst memories and drown in despair.
In life here, it’s the demons who do that. With me they try to make me drown in the fear of what I’ve been through and what could happen. When you have life threatening food allergies, it is scary, but especially so when you’ve come so close to death so many times.
Harry Potter asked a teacher at Hogwarts to teach him how to fight off the dementors because they kept making him pass out as he would hear the screams of his parents when they were killed by Voldermort (the most evil of all the evil characters) when he was 1. He kept reliving the memory and remembering the terror of that night. His teacher taught him the patronus charm which was more than just saying a word and waving his wand. It involved intense concentration on a happy memory at the same time. It was the happiness and joy from the memory that was the force that drives the dementors away.
Back to life here. I’m not one to say “oh, just think positive and it’ll all turn out ok” it doesn’t work like that. Trust me, I’ve tried. Positive thinking or happy thoughts just don’t make everything work out fine. HOWEVER… I thought back to the Bible and remembered the verse that says to take captive every thought and that whatever is right, noble, pure, just, lovely, excellent, praiseworthy, to think about such things.
So, while we might not use a wand and say words in Latin, the concept is the same. Just, by using the image of the dementors, it gives a face to my enemy (fear) and makes me stop and realize what’s going on rather than just be overcome by fear. And when I start being afraid, I think of the fear as dementors, and stop to refocus on something else.
I was trying to think of what to focus on instead as so many things seem remind me of my allergies. Then I realized I’ve had a song stuck in my head all day each time I start being afraid of having an allergic reaction. It’s a song by Steve Green, Think About Such Things. (Go listen to it, really, it’s good). And then it clicked. Growing up I learned hymns and other songs about God that I loved and I love singing those songs. And the songs my best friend wore an had recorded. And the songs that I play on my phone when I’m walking to the bus or having a rough day. And then I remembered a story I heard about a missionary who had been held hostage and was scared and heard a little voice say “sing”, and when she started singing the first hymn that came to mind, it calmed her down and refocused her back on God.
For years I’ve wondered how to fight the fear. I’m a visual person, (which is probably why I struggle so much with PSTD from seeing an ambulance or the flashing lights on an ambulance (flashing lights on a police car look different and don’t affect me)) so having a visual of the dementors helps me a lot to refocus.
I can sit there, overwhelmed with scary memories and all the “what-ifs”, and realize that I’m being overwhelmed by fear, but now, realizing that I’m fighting fear, I picture the fear as a dementor and think of a patronus and change to think about a song, a book, something exciting, etc., whatever it takes to send the fear fleeing. The most powerful though tends to be hymns and Bible verses I’ve memorized growing up in Awana.
I lay in the hospital bed on a Saturday afternoon/evening, covered with blankets, both my arms in splints, a bit loopy from the morphene, exhausted from sleeping less than 30 minutes over the last 24 hours, waiting for the surgeon to be ready. It was *supposed* to be my 3rd day at my new job. The anestesiologist looks at me and says, “Please tell me a good story of how you did this.”
24 hours earlier I had been on my way to work. I had left my bike at work as a coworker took my home by car, so instead of walking for 40 minutes to get to work, I figured I’d take my little razor scooter. You know, the kind kids ride. The kind that used to be all the rage about 10 years ago. The kind you push with your feet. You know, the kind that also can fold? Yeah. One of those scooters, not an electric scooter that looks more like a motorcycle.
“I was riding my little razor scooter on my way to work, and all of a sudden, I hit a rock or something and my scooter catupulted me onto the pavement and I landed on my elbows.”
He looks at me, nods his head and tells me it was a good story I have. I sighed. How did I end up here? How did I manage to break both elbows? And how did I manage to break them both to the point where I needed emergency surgery on the weekend to put plates and screws in both elbows? I knew what had happened and why, but I was still in disbelief.
So how did I manage to break my elbows to the point where the bone no longer was one bone but two pieces of bone… in both arms? Mainly, I can answer in 1 word: prednisone/solumedrol. Other stuff comes into play as well such as celiac disease, chronic reflux treated with PPIs for quite awhile, and also my body doesn’t seem to like to absorb nutrients like it should. But the biggest thing is the steroids. I’ve had them orally, in IV, in shots… yeah. In any form, they suck. Literally. They suck the calcium from your bones. They affect so many other things as well. And as much as they’ve helped keep me alive (especially in the last year), they also are a curse. I’ve had so many anaphylactic reactions in the last 3-4 years that I’ve been on a lot of steroids. And so, they’ve eaten at my bones.
I got a new allergist several months ago and she’s been amazing. She hates how often I’ve been on steroids the last year and actually has a plan to get my immune system to stop over-reacting to foods around me. But in the meantime till we wait for the xolair to get to the office for me, the goal is to keep me safe somehow, and avoid steroids. And also do my best to have my bones heal. I’m on calcium and other stuff to help absorb the calcium. And I’ll be seeing an endocrinologist to make sure the steroids haven’t messed anything else up.
But for now, I’m making progress as I’m in removable splints and it’s just over 3 weeks since surgery. If in 3 weeks all is healing well still, then I should get to ditch the splints and start PT officially. For now I’m required to take them off 3-4 times a day and work on moving my elbows. At first it was weird, but now it’s really nice. I can do SO much more again! I can eat with a fork and spoon, and the list just starts there. I get to finally go back to work in a week, and boy, I’m so so so looking forward to that!
The one thing I REALLY wish that doctors would do, is that when they’d prescribe someone a short course of oral steroids whether it be for eczema, asthma or food allergies or something else, is that they’d also prescribe calcium supplements as well, and while the prednisone may impair the absorbtion, hopefully it would start a habit of taking calcium regularly which would help keep the bones strong in case they ended up on more steroids again another time.
I will say that I knew I needed calcium for awhile, but I was having a hard time finding one that was safe that I could actually swallow. I didn’t know my bones had weakened to the point a simple crash on a little Razor scooter would cost this much pain, 4 weeks of work, and months of rehab. Lesson learned… the hard way. Thankfully since I’m young I should be able to rebuild my bones! I had better be able to! I’m such a klutz that if I can’t I’m in serious trouble.
I never thought I’d write a post like this, especially not this specific post. At the very core of my being is just a sense of gratitude, joy and appreciation for well, everything. I’m especially thankful for the ER, PCU and ICU teams who gave me a second chance at life last month. But even more than that, I have nothing but gratitude toward God, who kept me calm in the middle of the nightmare and hurricane and fought for me when I couldn’t keep fighting and going.
For probably two or three months now I’ve had this feeling that something was going to happen with regards to food allergies and that it was going to be bad, but that I was going to be ok. I’ve had dreams about food allergies before… the weird, the scary, and the, well, warnings. I’ve had dreams out of the blue about having a reaction, and then a week later, it happens, very similar to the dream. I don’t know why. It doesn’t always happen, but sometimes it does.
All was looking up. I was biking to work pretty much every day unless I had an evening shift. I biked over to a bike shop and got my bike tuned up and boy, I already liked my bike (freedom!!), but now, I LOVED my bike. I’ve biked to the doctor’s office, the pharmacy, I biked to the fabric store, to church… yup. Life was awesome. I ran a 5K. I biked an 11.5 mile round trip to Whole Foods. Oh, and I should mention, I have asthma and am on daily meds to keep me able to function. I was doing great. My family left me at home while they went on vacation and I stayed home because I had work. Yeah, I’d have liked to go along, but it was ok. I was going to have the most awesome 3 weeks on my own, biking everywhere, rocking out metrics at work, and doing stuff at church and at home.
Well, nope. That wasn’t to be. My great plans all turned to dust. Instead I ended up in the ER a few days after they left because someone at church ate nuts around me. The medical team at church did a great job of watching me, getting medical history for the EMT crew, even convincing me I needed to epi (I really don’t like having to use it). The EMT crew was pretty good too. The ER crew… nope. A dose of oral steroids, a neb, and a tiny steroid taper rx and I was sent home. I spent the night at my brother’s place, got up the next morning, took the metro and bus to work, and went on with life. Or so that was my plan.
I thought I was having a rebound reaction from the day before from how itchy I was. I kept pulling out wipe after wipe to clean the counters and registers. Then I realized why. Someone (exactly who, I don’t know) had forgotten about the no nuts and peanuts rule at work. There was a bag of trail mix under the counter right by the imprinting machine (which I was right by). I was so incredibly groggy from the antihistamines I took. And I was insanely itchy. Finally that calmed down, and my boss sent me to the back to rest for a bit because I was so sleepy. Then my tongue started to swell. As I came back out on the floor and was talking with him he looked at me and said, “MC, what’s going on? This is scaring me.” I couldn’t talk without slurring my words. So, I pulled out epi. The swelling went down. And then it came back. The next shift of coworkers came in and one came in, picked me and my stuff up and took me straight to the ER. I used a second epi in the car en-route. And when we got in there, I was able to talk normally. I showed the guy at triage the used epipen and explained what was going on, he told me to wait. Really?!? Then he pulls me back, sits me in a chair and tells me they’ll be with me shortly. Uhhhhh……???!
I sat there for a good 20 minutes, my tongue starting to swell again. I said to the lady next to me, “I shouldn’t be sitting here. This is the 2nd epipen I’ve used in 20 minutes and my tongue is starting to swell again.” “No, you really shouldn’t be sitting here!” she replied. “I’m a teacher, I’m trained in this. You should be taken care of already, not sitting here!” And so she got the attention of nurses who finally got me triaged. They took one look at me, saw what was going on, saw I didn’t have the greatest vitals or breath sounds, and got me back into the resus room. To be quite honest, I don’t remember what they did except for start and IV, get meds in me, give me another dose of epi or two, and at one point considered the possibility of starting and epi-drip and mentioned they may intubate me if necessary. I turned the corner, stabilized, and after several hours of being clear was sent back home. I spent the night again with my brother and sister-in-law, and spent the day at their place the following day as it happened to be my day off work.
I spent the morning hunting down a pharmacy with epipens and did a surprising amount of walking around downtown that day. Quite thankful for the metro! That certainly cut down on my walking. What amazed me was that my legs didn’t hurt from multiple epis. I wasn’t about to complain as there have been times when I’ve limped for a good week after epi.
What happened that afternoon, I don’t know. I started having another allergic reaction. It could’ve been a rebound from the day before. Or, it could’ve been due to nuts or peanuts at my brother’s place. They hadn’t eaten any while I was there but I did notice one of the hand soaps had peanut oil in it. I thankfully caught that before I used it! It looked really great as it was white tea soap… then I saw it had peanut oil. Whatever the cause, I don’t know for certain. But when my tongue started swelling and I was feeling like a chipmunk despite Benadryl and Atarax, I knew I was in trouble.
I had enough common sense in me to unlock the door to the apartment while I could still walk. Then I sat on the mattress I was on and everything went downhill. I was texting with a friend about what to do and she kept insisting epi. I knew I needed it. I don’t have a phobia of needles. More like I have a phobia of the ER. And epi = the ER. Also, the epipen’s shape isn’t exactly very encouraging to use. I finally mustered the courage to use my epipen, and then my friend insisted I call 911 because my brother and sister-in-law weren’t home yet.
And to top everything off, I didn’t even know the address to my brother’s apartment. He did have a landline, so I called from that, and then while I was on the phone with the 911 operator I searched through my emails on my phone and found the address (my brother just moved there the week before). It didn’t take long for the EMT crew to get there. They helped me up, checked vitals, and got me loaded up in the ambulance. Shut the doors, and turned lights and sirens on as we went to the hospital. They got an IV started, got me a neb, and then just as we pulled up into the ambulance bay, they gave me another dose of epi before rolling me into the ER as I was deteriating in front of them.
The next hours were a blur. I spent quite a bit of time in the ER. Since I had been in the ER 2 times in the last 2 days there was no way they were going to let me go home that night. It was clear to everyone that they’d admit me. The question was just when and where.
I will say, there was this dear lady on a cot in the hall right outside my room who had a friend with her to keep her company while they slowly worked on un-super-gluing her eye, and those two ladies were quite a hoot! They kept me quite entertained. Though, unbeknownst to me, they were eating a peanut butter sandwich about 3-4 yards from me. And during that time my tongue started to swell again. The ER doc and nurse took one look in my mouth and said to get more epi and that they’d need to admit me to the ICU for sure. My heart sank. I’m not a fan of the ICU. It means you basically don’t get sleep.
I thought it’d be like the 2 previous times I got admitted to the ICU. Pretty simple. Observation and meds as needed and steroids and all around the clock, then after a day or two they’d send me home. Nope. That couldn’t be further from the truth.
Several more doses of epi, nebs, Benadryl, steroids, and more later, there was a bed in the PCU (a step down from the ICU) that opened, and they moved me there. But they kept having to give me more epi every 30 minutes to 2 hours. Over 14 hours they gave me 12 doses. And that’s not counting the several I had the 2 previous days.
I found out during shift change that I had freaked out the charge nurse during the night in the PCU. She told the day nurse that she’d watched the epi kick in, witness the swelling go down, and then watched the epi wear off during the course of a 15 minute conversation we had. I couldn’t lay back in the bed for long because the epi kept wearing off and my tongue kept obstructing my airway and I kept slurring words and wasn’t always so easy to understand when I tried to talk. But The swelling finally stayed away long enough for me to finally manage to sleep for 45 minutes.
The morning started out great. I felt so much better after sleeping just 45 minutes. We thought we had kicked it. Nope. Several doses of epi, Benadryl, steroids and more later, I was exhausted. I called my nurse again, told him the epi just wasn’t lasting long enough anymore. He grabbed the doctor. I said the same thing to him, the best I could with a really swollen tongue and feeling like a chipmunk inside my mouth. He stayed calm. “Ok, we’re going to stop this.” I heard him go into the hall and say something to the nurses out there and before I knew it there was a swarm of people around my bed. They pushed more Benadryl, steroids, gave a whole milligram of epi as a sub-q (under the skin) injection rather than in the muscle. The normal dose is 0.3mg. Respiratory was called, I heard the ICU doc tell someone to have the intubation stuff ready and to have several sizes of tube ready. I was gagging, could barely breathe, felt like I was choking.
“Just keep breathing,” the ICU doc said as I closed my eyes and just tried to breathe when I felt like I was choking and trying to throw up, “you’re doing great.” They started an epi-drip too. And slowly, I came around the corner. The swelling went down. I could breathe again. I felt like just collapsing into the tub they had shoved in front of me when I was trying to throw up, one nurse still holding suction to keep me from choking on my own saliva.
We had avoided intubation. For 10-15 minutes that is. They wheeled me down the hall to the ICU to keep a closer eye on me, and when we got there the decision was made to just go ahead and intubate me while I still had an airway because they didn’t want to have to put a trach in. Or, in other words, they didn’t want to have to cut my neck to get a tube down to keep me alive. They gave me a racemic epi neb, and while after that I could breathe better, the swelling started to come back again within minutes.
I was so wiped out. I couldn’t keep fighting. Just minutes before when I was struggling to get air in and out I remember thinking, “Ok God, I can’t do this anymore. I can’t keep fighting.” And I just had a sense of peace and God saying “It’s ok, I’ve got you. I’ll fight for you.” And that he did.
Since I had a few minutes while I wasn’t super swollen as they prepped everything for intubation, I texted my best friends and a few other people about what was going on. I handed my phone to the nurse, asked her to plug it in to charge, and looked at the ICU team and they lay me down and put me to sleep.
I remember hearing someone ask me if I was still awake, then they said they were going to give me another dose of propofol. Then next thing I knew, I thought I had only slept 45 minutes and that they had failed in the intubation. I coughed out the tube and a bunch of gunk, and then I remember hearing ladies speaking in Chinese over me as they shoved a suction thingy in my mouth. I was bewildered. What on earth was going on? Where was I? As I woke up more, I watched my nurse erase “Thursday May 15th” on the board across the room and replace it with “Friday, May 16th”.
What??? I thought it was WEDNESDAY! What happened to Thursday???!!? I thought I’d only been unconscious for 45 minutes, not almost two full days.
I was quite bewildered as to what had happened. Slowly, over the next few days I began to put the pieces together and found out that while I was intubated they had gotten a med from NIH and that may have helped. My brother came by and checked in on me. When a nurse handed me my phone so I could tell my friends I was awake, I found that I had 154 text messages. Yes. 154. And a TON of facebook and twitter notifications as well. Little did I know, but there were TONS of people praying for me and rooting me on.
I also found out that a LOT had happened during the almost two days I was unconscious. I completely forgot I had asked my best friends to call my boss to tell him what was going on, and he passed that on to the whole district and all the stores in the district where I work were praying for me.
At one point my brother removed my best friends from the approved contact list I had given before intubation and so for 24 hours my two best friends had no clue if I was dead or alive. And that was only part of what happened. The rest can be summarized by saying that a LOT happened, and I was oblivious to it all. Later I asked one of my nurses about it and how I have a black hole in my memory and I don’t have a clue what happened and she told me, “We erased it from your memory for you, you don’t need to know what happened.”
The first few days following waking up were rough. I still had swelling come back a few times. So they left me on a clear diet because they were still worried they may have to reintubate me. I was so hungry. And with multiple food allergies there wasn’t much (if anything) I could eat from what the kitchen brought. I kept trying to yell at them (I was so hoarse from intubation that I didn’t really manage to yell) to not bring me food. It was to no avail. They still kept bringing in trays 3 times a day.
Out of all the people who cared for me while I was intubated, none of them knew me… except for one. When I woke up she came and saw me and asked if I worked at a certain store. Yup. “I knew it! I knew it! I kept telling them that I know this girl!” Awkward much? Yup. But she was really sweet. And as odd as it seems, I look forward to seeing her in the store again just so I can give her a hug and thank her for taking care of me.
Even though I still didn’t feel great after waking up, I was doing MUCH better. And all the nurses commented on how much better I looked now that I wasn’t on the vent. I snapped some pictures before and after and I have to agree, I looked a lot better. Still wasn’t back to normal, but my face looked better and as the nurses kept commenting, “you don’t have tubes sticking out of you!”
I expected I’d get moved out of the ICU pretty quick. Nope. I didn’t get moved out of the ICU till Monday. They moved me to the med/surgery floor. And that’s when the phenomenal care I had gotten so far at the hospital stopped. They took me off all monitors. Stuck me in a room with someone else. And when I called the nurse for meds, it took FOREVER to get someone to come. And then I found out the ICU docs had changed all my meds to oral and dropped the doses way low. I went from 60mg of predniosone every 6 hours and 25-50 of Benadryl every 6 hours, to just one dose a day… orally. They took off the “neb as needed” from my chart. Ditto on epi. So when I had an asthma attack it took forever to get meds. They told me they’d keep a really close eye on me there. Nope.
To make matters worse, I listened to my roommate order from the kitchen 2 peanut butter sandwiches… with EXTRA peanutbutter. I couldn’t believe my ears. I was still really hoarse, also completely out of breath from the asthma attack, and now I’m hearing her order peanutbutter right after she denied having any peanut butter in the room. She went off to surgery just as her sandwiches came in. And I tried to explain to the nurse that I couldn’t be around it. She just laughed at me for thinking that because I THOUGHT that there was peanutbutter in the room that I was having an allergic reaction again. She LAUGHED. Yes. Finally, I explained in tears everything I’d been through in the last week. I was on a really high dose of steroids so I couldn’t control the emotions. I’d been INTUBATED because someone ate nuts next to me without me even knowing it. And here they were laughing at me for thinking I could have an allergic reaction to being around nuts. She said that the reason my throat felt swollen was because I had been intubated. Um, no, this was a different kind of swollen than just from the intubation.
Then all of a sudden it dawned on the nurse what was going on. She did a 180, and took care of the situation. Got me Benadryl, got the neb I needed, and took the peanutbutter out of the room, washed her hands, and got me a cup of water and ice chips and then stood there with me for a bit as my body calmed down slowly.
I called a friend who’s an allergy nurse and has been intubated several times herself due to severe asthma. I thought I was crazy, but she agreed with me that the situation I was in was really, really bad, and as crazy as it seemed, it was better to leave AMA (against medical advice) and if necessary go back to the ER. The ER knew better how to take care of me than the med/surgery floor.
My roommate came back from surgery and we ended up chatting about the peanutbutter and she explained (upset at first) that peanut butter was the only thing she could actually eat without major GI problems and so she had to have her peanut butter. Really? You have got to be kidding me. But, as we chatted about it, she softened and started to understand better. It took all afternoon and evening to get the mess sorted out. I pestered the nurses so much about leaving they finally got an ER doc to come up and talk to me.
Lo and behold, she had been in the ER the night I was admitted and remembered me, even though I hadn’t seen her. She knew I’d been intubated. And she knew that I wasn’t stable enough to go home. She was clearly not happy with my begging to leave. So, she compromised. She fixed the med doses, got them back to IV, put in my chart that I could have epi if needed, ditto on nebs and other meds. And they moved me to a private room so I wouldn’t have to deal with a roommate eating peanut butter. And she said they’d work on answering my call bell faster than they had been.
She looked at me and said that if I left now and had to come back, there would be a good chance they’d have to reintubate me and it being so soon, that would cause a lot more trauma to my body and be a LOT harder for my body to recover. She did well. She fixed the mess I was in, and got everything taken care of. I got moved to another room, and managed to sleep 5 ½ hours that night. That was the first time in a week I’d slept longer than 45 minutes.
I finally got discharged the following day. I was so ready to get out of the hospital and rest without monitors beeping, doctors, techs and nurses coming in all the time for meds and vitals. As I waited for the last bit of discharge stuff to be taken care of a coworker and former coworker came by to chat for an hour. That was a HUGE blessing. My sister-in-law picked me up, and we went to her and my brother’s place where I crashed for a nap while she went shopping for food and meds for me. I was outside for the first time in a week and the weather was absolutely amazing. Little did I know that the week I spent in the hospital it rained a lot!
Having been in bed for basically a whole week and also not being allowed to eat much of anything, I lost a LOT of muscle. Like, a LOT. I had to think about walking. Something as simple as putting one foot in front of the other took lots of focus and I had to think to myself “heel, toe, heel, toe,” and go super slow. My balance was really bad. And usually I have really great balance.
It was a rough few days I spent completely exhausted. My SIL took me down to whole foods, and just getting on and off the escalator was a feat. I never felt so uncoordinated in my life! I felt like a discombobulated penguin waddling at a diagonal.
It’s now been almost 3 weeks since I was discharged. I’m back home-home rather than with my brother and SIL. I’m back at work. My boss eased me back into the schedule. But I’m still struggling with balance some. Part of my left hand and foot are numb, which my new allergist thinks is related to how I was positioned during intubation, and I have a feeling is related to my balance issues when I walk. But I’m a lot steadier than I was, and I even got back on my bike today!!! The smile on my face as my sister and I biked several times around our neighborhood was pretty much ear to ear. It felt different than I remembered biking feeling like. But, it felt good. Hopefully in a week I’ll be back to biking to work.
Emotionally, it’s been rough. Thankfully I’m on a MUCH lower dose of steroids and only have a few days left of the taper, but my body can’t seem to sleep despite being exhausted. I’m slowly regaining my coordination. I take walks to work on rebuilding muscle I lost. It’s a fight. But I’m not giving up.
Going back to the beginning of this post though, the very core of myself has changed. The ICU team gave me a second chance at life. And I’m realizing that I don’t have to be the same. I don’t have to run around like I’m in a rat race.
The first few days out of the hospital were the hardest. When I was in Whole Foods, I was walking so slow, and even just someone walking past me would almost knock me off balance. Everyone it seemed was busy, busy, busy, and running around in their own “happy” little worlds, and here I was, exhausted, feeling like I couldn’t keep up with anything or anyone. It was devastating at first. As I slowly got back on my feet over the next few days and managed to get lost in downtown (and then get un-lost thanks to GPS on my phone!) on my way to the pharmacy on my own, I started to process everything.
While I was in the ICU I watched Brave and Frozen. Probably a dozen times each. Those are now among my favorite movies. They also helped me process through what I’d been through. That and all the time I spent trying to sleep but couldn’t due to the crazy dose of prednisone I was still on.
On Tuesday, the 3rd day I ended up in the ER, I woke up that morning, bright and early, and couldn’t sleep. So, I pulled out my kindle, opened the Bible app, and found myself in Psalm 46. As I read, I found myself encouraged and something saying in my soul, “Be still and know, I am God, I’m the creator of the universe, I’ve got you. You’re going to be ok.” I didn’t have the slightest clue what the next day would hold. But I had peace. I knew God was going to take care of me, whatever it was that would happen. I remember texting one of my best friends, “I have this weird feeling that something really bad is going to happen. Idk what, but I feel like whatever it is, I’m going to be ok.” She was a bit freaked out by that text, but I don’t think she had any clue what was going to happen either.
A bit over 24 hours and countless doses of epi, Benadryl, and prednisone later, I found myself, choking, a whole swarm of doctors, nurses and RTs around me, pushing more meds into multiple IVs. I was trying to throw up while gagging. Gasping for air. “God, I can’t keep fighting. I can’t do this anymore.” And I felt a reply, “That’s ok, I’ve got you.” Despite the storm raging inside my body and the team of doctors, nurses and all fighting to keep me alive, I was oddly calm. I was gagging and gasping for air. But I knew somehow I was going to be ok.
Having to slow down due to balance issues since it all, and just a lack of energy and also learning to re-coordinate my body, has also been a catalyst to realizing that I don’t have to run around like a crazy person in a rat race to accomplish things. I’ve also realized that I don’t have to accomplish all the things I thought I had to before.
Being intubated for nearly 2 whole days in order to keep you alive and spending almost a week in the ICU really changes your perspective on, well, everything. The things you thought were important suddenly don’t matter as much, and things you had overlooked as trivial you realize are more important.
I’m an introvert. No, that doesn’t mean I’m shy. I can be. I definitely used to be. What it does mean is that I have to recharge on my own. I grew up in 4-H. I learned public speaking and how to reach out to people and include them in things. I’ve been that odd duck that didn’t know how to fit in. I still am at times. I’m different. But I also work in retail. The store is a small Christian bookstore. At first walking up to customers to ask if they needed help was awkward. But I got used to it. And now I absolutely love my job. I love that I get to interact with people… complete strangers (and regular customers become friends)… and I get to encourage them. I get to find out things about them and sometimes they’re the ones who encourage me. I get to make them laugh sometimes. Other times a transaction ends with a hug or tears. I’ve shared bits and pieces from my life, my best friend’s life and legacy, or other things that come up.
I get to go to work every day and brighten someone’s day. I get to bring a smile to their face. I get to challenge people with ideas and inspirations. And really, whether or not you work in the same kind of place as I do, or if you work in a cubicle, at the end of the day, how have you impacted the PEOPLE around you? How have you interacted with them? What kind of legacy did you leave for that day?
As people, we crave relationships. We were made to relate. We also don’t live on earth forever. I honestly don’t know if I’ll live another day. It can be scary. I love my church. But I don’t feel safe enough to go back yet. I work with people every day. Comeplete strangers. Some have walked in the doors eating a bag of nuts (yes, this happened, and yes, unfortunately I ended up in the ER). I’ve had conversations with customers and my food allergies came up and then they said, “oh! I had a peanut butter sandwich for lunch! I, uh, I think I washed my hands since then….” I think I’ve freaked out my boss enough that he’s now paranoid about ANY coworker bringing anything in from Panera (because they have so many items with nuts there) or other places. But I still never know what the customers walking in the door just ate or are eating.
My very bestest friend died at the age of 19 years and 3 days. That was 3 ½ years ago. I still miss her so, so, so much. But it also affects my perspective on life and death, and well, everything. Is what am I doing important? Sometimes it’s the little things and the relationships that are important, not the “big” things.
I’ll be quite honest. If it wasn’t for my faith in God and that there is a hope beyond death and that he sent is one and only son, Jesus, to die despite being blameless, and pay the price for all the things I’ve done wrong, then I don’t think I’d still be alive. I’ve been through SO much in just 23 years of life that without a reason to live for beyond this short life, I’d be completely depressed, hopeless, and probably have committed suicide.
But I haven’t. And I’m not depressed. And I am not hopeless. Quite the contrary. I have more strength to go forward than I ever thought I’d have. I can’t do this on my own. But, day by day, God gives me the encouragement from His Word, the Bible, to keep going forward. It may sound absurd, but really, it’s the only reason I have a reason to keep living. To keep on encouraging people I encounter every day whether at work, as I’m shopping, taking a walk, or wherever. There are so many broken people in the world and I’ve realized that I can encourage them through my story, through the things I’ve read, listened to, been through, watched, etc.
How on earth people find my story encouraging, I don’t always understand. I’ve nearly died. Several times. But I’m not giving up. I have a hope that doesn’t make sense. But it also makes perfect sense. And it’s the reason I keep fighting and am not giving up.
The simple fact that the God who created the universe by just speaking it into existence, who keeps everything running, knows the name of every star, tells every blade of grass how much to grow each day, each flower how much to open each day and when to close for the night, tells the clouds and wind where to blow, where each drop of rain should fall, knows the exact number of grains of sand on the ENTIRE PLANNET…. And that he also cares enough about ME, a girl (who is one of countless other humans who have lived) who is far from perfect, and keeps me calm while my body has a storm raging inside and keeps me alive… I have nothing but gratitude. And that adjective is far from the right one to really describe my heart and core.
I’ll end with this:
I look forward… no, I LONG for… to the day when God calls me home to heaven and says “Well done, good and faithful servant.” Really. I can’t wait. But till then, I’m going to keep on going here. Encouraging people I meet. Doing my best to do whatever it is I need to do that day. Yes, I still worry about having another allergic reaction. But, I know that if it’s my time, then hallelujah, I’m going HOME!!! If not, then God still has work for me to do here, and I’ll keep on going. Am I perfect? Nope. Does that mean I can’t be a blessing and encourage people and shine light in a scary and dark world? Heck no! So, I’m going to keep going, shining a light of encouragement.
So, are you going to join me? Light up some more candles and let’s make a difference. Do I expect to turn the whole world around? No. But that’s not going to stop me from making a difference right where I am right now.
…in the land of Milk and Cheese.
[note: this post was originally written back in September of 2011, not sure why, but I just never posted it… till now. I’ll try to eventually get the following posts to the series written up and posted as well]
I never expected to find myself traveling as much as I have been in the last 2 years, and especially not with severe food allergies and celiac disease. But, I can tell you, it is possible to do it… it’s not easy, but it is possible… even on relatively short notice.
I just spent 10 days in The Land of Milk and Cheese, aka, France. And I am happy and relieved to tell you that I’m still alive, and didn’t use the EpiPen on this trip. It wasn’t lacking in adventure though! I had less than 2 weeks warning I was actually going to go on this trip, and the thing that loomed in my mind was that I was going for my cousin’s wedding. And if you don’t know about French culture, well, food is central, and not just that but it lasts for hours! And I’m not kidding. But
I was honestly quite surprised at how much allergy friendly food I found there! We found some gluten free stuff at a Bio coop store, not expecting to find that kind of stuff in a regular grocery store. But surprise surprise! We found a whole isle of diet stuff in Auchan! Not the complete isle was safe for me, but I was still surprised at how much there was in that isle, and throughout the rest of the store.
And then there was finding “MC safe” stuff in my grandmother’s kitchen. That was interesting. But it wasn’t anywhere as bad as dealing with the wedding. So, over the next week(s) I’ll share some tips I learned from this experience, and some things that did and didn’t work for me.
1. Surviving a trans-Atlantic flight. I’ll cover this better later. For now, let’s just say, pack your own food, and be super careful. I had no problems on either flight, though on the way back I had an interesting dialogue with one of the flight attendants. I had brought my own food but forgot to bring some kind of utensil. Fortunately they had plastic-ware that was in a sealed bag. They also were serving water bottles with lunch. I was nearly served a meal that would have required the EpiPen in-flight, and quickly told the flight attendant that I have severe food allergies, and asked if I could just have a bottle of water and packet of sealed plastic silverware. She didn’t understand at first what I wanted, though I thought it was simple. I asked her again explaining again that I have severe food allergies and brought my own food. She then told me, “well, I don’t know what I can give you… I could give you a packet of butter.” “um, I’m allergic to all dairy products.” “oh. Umm…” And then she understood I just needed the sealed silverware and water. After that they remembered better that I couldn’t have the airplane food, and she was the one who kept another flight attendant from nearly serving me pizza loaded with cheese!
2. Jet-lag. NEVER EVER EVER try to read ingredient labels while dealing with jet-lag, especially if you’re not familiar with reading them in a different language. I’m fluent in oral French as I’ve grown up speaking it, but I’m not as great with reading it. I’m getting a lot better at it though. However, ingredient labels in Europe look a lot different than in the US. Some over in France are just in French. Others are in 2 or 3 languages. And still others seem to be in nearly every language under the sun! Finding either the French or English section on those products was quite a challenge! Oh yeah, and some of them were in tiny print, so you might need to bring a magnifying glass with you!
But here’s my reason for why you should NEVER read ingredient labels while jet-lagged: We thought we had found a safe soy-milk. It even tasted decent. Except that I didn’t feel right afterwards. I wasn’t sure what it was from. It took 2 days for me to figure out it was the soy-milk. I re-read the ingredient list and saw one of my most hated ingredients listed: maltodextrin. I never really know if this comes from gluten, corn, or some other source, and it wasn’t explicitly stated on the label. But laying on the couch curled up in a ball for 2 hours after drinking the soy-milk made it pretty clear that there was something in the soy-milk that was not safe. Thankfully the reaction wasn’t too bad, and only lasted 2-3 hours each time.
3. When in doubt, leave it out.
You’ve probably heard this saying before, and I live by it a lot. If something isn’t clearly indicated, then put it back on the shelf and look for something else.
4. READ INGREDIENT LABELS CAREFULLY!!
When we were in the Bio coop store I saw a package of supposedly “guaranteed gluten free” musuli. Curious, I picked it up and read the ingredient label. The first one had banana in it, which I’m allergic to, so I put it down pretty quickly with a sigh. I spotted another one next to it. Hoping it didn’t have banana I read the ingredient list… only to find that it had rye in it. HUH!?? A product that claims to be guaranteed to be gluten free and has rye in it, and any celiac should know that rye=gluten. The person working in the store insisted that it was gluten free, but I wasn’t going to believe her. I know that Europe has a “low gluten” thing that I still am getting confused between the “no gluten” thing, but um, since when was rye not gluten??
5. Have your own towel set aside.
I do this allll the time at home, and naturally, I do it when I go somewhere else. If you live in a house where other people eat your allergens, then I’d recommend using a separate towel. People don’t realize when they’ve just eaten glutenous bread, or even cheese or butter or who-knows-what-else, then instead of washing their hands, they just wipe them on the kitchen towel. So, in my house, I usually use paper towels, unless I’m baking, then I’ll keep a towel out in the dish rack for me to use where everyone else knows it is only to be touched with clean hands.
Finding a place to put such a towel in my grandmother’s kitchen though was a bit of a challenge. In the end, her solution was to put some wax paper up on top of a small shelving unit, and I kept a separate towel up there. When it got too wet to really dry efficiently, I’d switch it out for a new clean and dry towel. I would have rather had the towel hanging somewhere so it could dry better, but really, there was NO safe place to hang the towel where other people wouldn’t mistake it for the “normal” towel, nor where it wasn’t going to be in close proximity with gluten and/or dairy.
6. Be prepared.
Do your research before going. I had less than 2 weeks, and in reality, the prep time was way less than that because I spent most of those 2 weeks doing homework so I could get ahead in order for my profs to let me go on the trip. But, thankfully I’ve been to France before (before I found myself with food allergies and celiac disease) as I have family there and I also am fluent in French so I could read labels there easily and was familiar with how to explain to people about things related to food and my allergies.
7. Bring your meds.
Bring all of them, and extra EpiPens. Any other med you might need. I got 2 extra EpiPens before the trip, which brought the total of EpiPens I have to 5. I’m not sure about whether or not they should go through the x-ray machine at airport security as EpiPen has a warning about it on their website. But after asking around everyone I heard from said that they all have it go through the x-ray, I decided to keep doing it too. The EpiPen my friend used to save my life just over 2 months ago worked fine despite having gone through I-have-no-idea-how-many x-ray scanners. Probably around 10-20 times… If you have a different perspective, let me know! I’m still not sure what to think and haven’t yet gotten the chance to remember to ask my doctors about it.
I’ve never had a problem with my EpiPens and airport security. If they’ve had a hesitation about what this thing is going through the metal detector in the US, as soon as they’ve seen what they are, they just let them go through. In Belgium though the security guy took a good long look at them before deciding they were fine and didn’t need to be further inspected (I think it’s that they’re not used to seeing that brand of epinephrine as it’s usually seen in the US and Canada only). But had there been a problem, I had a letter from my doctor giving me “official” permission to carry EpiPens and self-administer them in case of anaphylaxis.
All in all, it IS possible to travel safely with severe food allergies and celiac disease. But it isn’t easy. I have plenty more to share about this trip food-wise, so be on the look-out for more follow-up posts here! Aside from the issue with the soy-milk for the first 2 days, I was pretty much fine the whole trip.
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!!!!!!!!!!!