More Unique Than Most

Note: I have been a bit apprehensive about posting this piece. The tone may strike as a contrast from my typical upbeat stories, but it’s just not everyday that I get hit by a beer bottle while running, spontaneously cross paths with inspiring individuals, or develop a guiding life mantra! I initially created this blog to share my active adventures while living with chronic illnesses, and I feel that accurately depicting the daily struggles of dealing with autoimmune conditions is imperative. I promise that my next post will be more cheerful, but in the meantime, I hope you enjoy a raw look into my mind.

 

American parents are notoriously known for making their children feel special. They truly believe, and instill in the minds of their offspring, that they are different from the rest, outstanding, exceptional. But there are some realms where being special is a curse rather than a blessing. The medical field is one of them. Throughout the past several years, I have been told by countless distinguished physicians that my body is “very interesting,” that my medical history is “quite strange,” and that I am “unique…more unique than most.”

While I do hold an enormous appreciation for research, tremendously value the heartfelt relationships I have developed with my physicians, and am glad to ignite their intellectual curiosity, perplexing the University of Chicago’s most decorated doctors certainly has its costs. Comorbidity is the norm rather than the exception when it comes to illness, but I take that to an extreme. If I was just a “typical” patient-  one with diabetes who responded to insulin in a predictable manner, one with food allergies who reacted moderately, or one with a defining set of connective tissue disease symptoms, rather than symptoms from a variety of clusters- my medical trajectory would be fairly straightforward. But I am unique. My conditions are labeled “undifferentiated,” as they do not fit a presently defined syndrome. My hematologist suggested that I attend medical school and try to study individuals like myself, whose autoimmune systems have gone awry. I appreciate her confidence in my scholastic ability, but no patient wants to be told to go find her own cure far into the future!

Most of the time, I am able to maintain a relatively positive attitude- focusing on what I can control and pleading that my body cooperates. But sometimes I just cannot stand feeling that my body is constantly fighting against me. I exercise for a minimum of 90 minutes a day and weigh 97 pounds when I wake up, yet I often get so bloated throughout the day that children ask me if I am pregnant. I rarely eat dessert, and when I let myself have a treat, my blood sugar skyrockets so high, becoming pretty much unresponsive to repeated insulin injections and leaving me feeling quite ill. When I wear a dress on the train to work, I get an itchy red rash on the back of my thighs from the seat, perhaps due to some residue of food I am allergic to. So I often do feel angry, but then I get mad at myself for feeling this way. I have a loving, supportive family and have had a very successful college career. While many adolescents are stuck in the hospital, I am out living an active life. I should be grateful; these thoughts of anger are absurd.

But every now and then, my conflicting emotions are validated. While reviewing an extensive array of symptoms at a new rheumatologist last week, the fellow remarked, “Any symptoms of anxiety? Depression? I mean, how could you not!” The next day, at my annual checkup, my pediatrician took a break from thinking about my puzzling body to discuss my plans to pursue a Ph.D. in clinical psychology and future career goals.

“So what’s the secret? How do you do it?”

“Do what?” I asked.

“All of it. What keeps you going? Most young people who have grown up with chronic illnesses have given up by now.”

I do not think either of these people intended to induce so much emotion, but I was crying the whole ride home. I cannot pinpoint why, but I have felt a plethora of conflicting feelings in the days since. Frustration at the voids of modern medicine. Anger at the seemingly impossible feat of attaining mind-body harmony. Grateful for the resources that have allowed me to cope relatively successfully. Miserable for all those children and young adults who have fallen victim to their illness. Most of all, though, validated.

That night, the suggested intention in my yoga class was, it doesn’t get easier; you just get stronger. I felt as if the teacher had read my mind. My body is exceptionally unique, and my chronic illnesses will not relent. They will continue to throw me physical, social, and mental curveballs for years to come. There will be good days and bad days. I can work towards accepting that. Unless some miraculous medical discoveries are rapidly made, it will not get easier. But I will continue to get stronger.

An Empowering Encounter

I have been pretty terrible about updating my blog lately. Since I’ve been back at Emory, I’ve only posted once. Thoughts of new posts constantly come to mind, yet with classes, research, volunteering, extracurricular activities, and of course, running, I just haven’t found the time to write. This weekend, however, was very special- in the midst of stressful schoolwork and homesickness, I had a chance encounter that completely restored my faith in humanity.

It began Friday afternoon when, after picking up my race bib and t-shirt for Saturday’s Winship Win the Fight 5k, I was walking to a lab meeting. Suddenly, an older man approached me and asked about my ankle. I was quite surprised, but he seemed friendly, so I briefly explained the beer bottle incident, which coincidentally happened exactly one year ago (the Friday afternoon before the Winship 5k, which I had been planning on running!) Surprisingly, the man seemed relieved. We continued talking, and it turned out that Jim is a melanoma survivor. His calf was affected by cancer, and the sight of my ankle had worried him. I asked him if he was running the race, which he was, and we began discussing our favorite races and times. As we parted ways, we wished each other luck, and he told me that he hoped to see me on the podium tomorrow. That would have been enough. Sad as it is to say, it’s not everyday that a random stranger strikes up a conversation with you. I thought about Jim for the rest of the day and what a special encounter it had been.

Come race morning, I was warming up with tears in my eyes. I could hear the Winship Cancer Institute speakers, which made me think about my cousin Jimmy, a pediatric oncologist, who passed away a few years ago. I hadn’t realized what an emotional event this race would be, and as I finished my warm up, I heard, “let’s hope there’s no beer bottles on the course this early in the morning.” I turned around, and there was Jim! We entered the start corral together and discussed our families and backgrounds while waiting for the gun to fire. This was the first race I’ve run without knowing anyone- in fact, I’d never run a race without my mom or dad on the course or in the crowds. While the race was held on Emory’s campus and had around 3,000 runners, walkers, and joggers, I did not see any fellow students! It wasn’t really the type of event one typically attends alone- there were teams with hundreds of people in matching t-shirts, groups of cancer survivors, and families running in honor of loved ones. But I did not feel alone at all- I had made a lovely acquaintance, and I was running for a compelling cause.

It was a challenging course (the name of the area, Druid Hills, gives it away) but my endorphins were in full gear. I was the third female to cross the finish line, but rather than analyzing my splits and cooling down, I just wanted to see Jim finish- and he did, in under 26 minutes, and was handed a white flower, indicating he was a cancer survivor. And Jim was right- we did see each other on the podium! We both placed in our age group, and he was elated that both he and “his adopted daughter for the day” had medaled.

I had been on cloud nine the whole day after my encounter with Jim when I received an email from him. Without knowing anything about me but my first name and that I was an Emory student, Jim had found my blog. He deeply touched my life, and it seems I made an impact on him as well. I don’t know what else to say about this weekend. Jim has the spirit of runner- a fighter, an unstoppable machine, a pure human being. We were brought together by chance, and I hope to see him at next year’s race. Jim made me appreciate running, living, and human goodness more than ever before. Miracle moments like these are few and far between, but they truly are empowering.

Jim

Peppermint Oreo Ice Cream Cake

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I’ve always wanted to try ice cream cake. I remember going to countless birthday parties growing up where ice cream cake was served, but my mom and I never tried to make a safe version for me ourselves. Now that I am addicted to Dunkin Donuts unsweetened ice tea, I am tempted by their ice cream cakes everyday on my lunch break at work. This weekend, I decided it was time to stop feeling sorry for myself for not being able to have this treat and start creating my own dream ice cream cake.

This recipe is simple and foolproof yet absolutely delectable. It’s only four ingredients, yet I promise your taste buds will be thanking you! Best of all, it’s dairy, egg, peanut, and tree nut free, and vegan as well. Can’t have soy? Substitute with coconut milk. Can’t have gluten? Use your own favorite sandwich cookie. The possibilities are endless- you could try a crushed graham cracker crust, a different flavor ice cream, or mixing in your own favorite candy or fruit. Let me know what combinations you come up with!

You will need…

2 quarts Creamy Vanilla So Delicious Dairy Free Soymilk Non-Dairy Frozen Dessert

1 package Oreo cookies

6 crushed candy canes

¼ cup melted Fleischmann’s Unsalted Margarine

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Oreo Crust

Place 24 Oreos in a food processor and blend until desired crumb texture. Add melted margarine and pulse until well combined. Place the ground crumb mixture into a 10” springform pan and press evenly onto bottom. Refrigerate this crust for at least one hour.

 

Peppermint Ice Cream

Take ice cream out of freezer and let soften for 20 minutes. Put ice cream into a large mixing bowl. Add 4 crushed candy canes. Mix with hand mixer until smooth. Add more crushed candy canes if desired before pouring mixture into springform pan. Place in freezer for at least 2-3 hours.

Topping

Remove cake from freezer and top with chopped remaining Oreos and crushed candy canes. Place back in freezer until ready to serve.

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Behind the Facade

 

It is a blessing yet a curse. A relief yet a disguise. While I am small and may appear young for my age, from the outside, I look like a healthy teenage girl. For the most part, I am- I eat a balanced diet of fresh fruits and vegetables, whole grains, and lean proteins; I exercise daily; I try my best to prioritize sleep- I do all that I can to live a healthy life. What no one can see, however, is what is going on inside my body- what I cannot see, what I cannot control- an antibody overload.

I was diagnosed with my life-threatening food allergies when I was a baby, and I was diagnosed with type 1 diabetes during my freshman year of high school, so about four and a half years ago. Therefore, you would think that, by now, I would be accustomed to the challenges of managing these chronic medical conditions. Numbers would verify your assertion- my last episode of anaphylaxis was to a bee sting (something out of my control,) and I have not had a food-related anaphylaxis episode since I was in elementary school and ate a cookie with trace amounts of milk (the cookie was then sent to the FDA, and the company was shut down!) My hemoglobin A1c is consistently near five percent- meaning that my blood sugar is comparable to that of a non-diabetic individual. Based on these scientific facts, you would think I am the perfect example of a teen successfully managing food allergies and diabetes. You would think that these conditions do not bother me on a daily basis. You would think that I have become fully acculturated to these medical hardships. I wish I could say you were right, but I cannot.

I want to illustrate my point with a hypothetical situation similar to one I’ve dealt with before. For situations involving multiple nights away from home or airplane travel, multiply the stress and preparation by ten.

It’s the afternoon of my sorority formal. Nervous excitement fills the air as my friends scamper to get ready. Does this dress make me look fat? Who is good at curling hair? Which purse goes best with these shoes? How far do you think they’ll go? I hope he likes me. I hope this night lasts forever. Typical college-girl anxieties.

In my head, quite different thoughts arise. Is it better to leave my comfort zone and possibly cause a scene at a restaurant I’ve never been to while trying to explain my allergies or to bring my own safe food? Is it worth it to fit in but risk a reaction? If I bring my own food, how will I keep it cold until we get there? The hotel assured me that they would provide a refrigerator for my room, but what if it’s not there? What if it’s too cold for my insulin (don’t want a repeat of the school nurse freezing my turkey on the 7th grade Springfield trip!)How many extra sandwiches should I bring? What if our group decides to stay in Atlanta later than planned the next day? How many cups of Cheerios? I need to measure mine out in advance to know how many carbs I’m eating- but what if my friends see my food and ask to share? I don’t want to be rude. Should I just bring the whole box? I’ll bring my own bar of soap, but what if the hotel’s soap contains milk or almonds (also don’t want a repeat of a playgroup party where everyone washed their hands in effort to keep me safe but ended up making me sick!) How many lancets should I bring? Pen needles? Alcohol swabs? Where will I put my purse during the dance? Most girls will hand their guy their cell phone to stick in his pocket, but I don’t think all of my supplies- two EpiPens, Benadryl, meter, insulin pen, and glucose- will fit. I hate looking like an obnoxious girl who can’t bear to leave her oversized purse- I wish everyone could just know the reason why. How left out will I feel when my friends are drinking? Will people think I’m no fun? What if my date and I hit it off and he tries to kiss me? I can pretty much guarantee he will have eaten something I’m allergic to within the past few hours. What if I need medical help and everyone is too drunk to notice or care?

These thoughts seem to belong to a ridiculously anxious person- one who fears everyday life. I do not fear daily life, and I take every opportunity I can to embrace my food allergies and diabetes. But these are the thoughts that run through my head- I presume that, upon looking at me, no one would imagine this. I am different. By no means do I wish that my medical conditions defined my outward appearance, but it does make it harder for my peers to understand. By no means is it their fault-only other individuals living with similar challenges would know how I feel.

So as we are getting ready, I reply to my friends- No, that dress does not make you look fat. My hair is naturally curly, so I cannot help with that. I think your silver clutch is killer with those platforms. I’m really excited for tonight too- but am I? Yes, of course I am- it’s my first college formal, after all. The nervous excitement is contagious, and I’ve heard spectacular stories about this weekend from the older girls.

I wish I could shed the weight that all of my medical preparations bear upon me. I wish I could have the same worries as a typical college girl. But my allergies and diabetes have made me the person that I am. While these medical conditions are sometimes considered disabilities, in several ways, it is easy to see them as abilities- instilling within me the persistence and perseverance that make me an endurance runner, the discipline and drive that make me a strong student, and the conscientiousness and responsibility that make me a loyal friend.

When Life Throws You Beer Bottles…

It was 4:30 on Friday October 4th. I was feeling very homesick and struggling with chemistry, so I was eager to log some miles before getting ready for dinner. I am not your typical college kid- I don’t enjoy staying out until two in the morning, don’t do random hookups, and, largely because of my medical conditions, don’t even drink at all. Therefore, I was not expecting to get hit by a beer bottle on my run.

As I ran out past my dorm, which lies atop fraternity row, I could see a few guys throwing something around in their frat house’s lawn. We made eye contact, and they stopped what they were doing as I passed. All of a sudden, however, I felt something heavy puncture my ankle. I wasn’t sure what was happening, so the first thing I did (as any runner naturally would) was pause my watch- 0.06 miles elapsed. Lying next to my foot were the remains of a beer bottle, and only then did I realize what had happened- one of the guys had kicked a beer bottle, and it hit my ankle and shattered on it.

Before any of the frat guys came down to apologize, a man- who turned out to be the head of the interfraternity council and just happened to be the sole spectator of this event- came running across the street to tell me that the paramedics were on the way. Paramedics- this is ridiculous, I’m fine, I thought. My ankle was completely numb, so I was shocked when I looked down to find blood pouring out of my ankle and into my shoe and sock- great for my anemia. The perpetrator- let’s call him Chad (sorry if your name is Chad, but when I searched typical frat guy names, Chad was #1 on the list)- was extremely concerned about my bloody socks. While we waited for the paramedics, he assured me that he would replace them (which he did not) and also invited me to his fraternity’s famous all-white party the following night (which I did not attend). Later, my friend thought it would be great if I went to the party on crutches, carrying my deep red socks.

After inquiring about my MedicAlert bracelet, the paramedics informed me that the cut was very deep. I would need to get the wound stitched up immediately, so my best bet was to ride in the ambulance with them. Unfortunately, I did not see this working out well. I could be in the emergency room for hours, and I needed my medicine and safe food. All I had with me in my running fanny pack was an EpiPen, glucose, phone, and keys- no meter, insulin, or dinner. I was in an extremely distressed state when, seemingly out of nowhere, my sophomore advisor, Zeena, appeared, headed for the parking garage. That’s when I lost it- I felt so relieved that she was there, yet so overwhelmed by this whole situation. The goal of this run was to alleviate my stress, not create far worse problems!

She calmed me down and called my other sophomore advisor, Meredith, and we worked out a plan. Meredith and I went up to my room (for once, I took the elevator rather than the stairs to the 5th floor) to get all of my medicine while Zeena went to the dining hall to get my specially prepared meal. We then walked to Emory Hospital. While this was on campus and not very far, in retrospect, it was a terrible idea- surely it exacerbated to damage to my ankle! Once in the waiting room, I called my mom to inform her that I was in the emergency room. She could think of many plausible reasons that I would be there- anaphylaxis, asthma, hypoglycemia, hyperglycemia, etc.- but never would have predicted this. Luckily, the wound was still fairly numb, and my two amazing advisors and friends kept me distracted by taking ER selfies.

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The doctor informed me that my tendon was damaged- great for running– but that I should be able to walk without crutches as soon as the stitches were removed, which should be in five days. Well, given my medical history, I was not too surprised when, after five days, an Emory physician informed me that the stitches were not ready to come out. After twelve days, they still didn’t look ready, but he figured he would try. Well, the wound reopened and started bleeding the next day, so I was given Steri-Strips but instructed to stop using the crutches. After a few days of this, I developed severe shin pain in the other leg (at least I now had a use for my compression socks) as well as pain in the ankle. So back on the crutches it was for six weeks. All the time I would normally be spending running was replaced by physical therapy. Not running was unbearable, and while I enjoyed getting to know the physical therapists, I was quite alarmed when a doctor informed me that I had a “rapidly growing staph infection” that I had most likely caught from physical therapy- so much for that five-day recovery.

The most difficult part of this time was, without question, not being able to run. I missed not only the beating heart, sweaty skin, and throbbing legs, but the use of my mental endurance, will power, and drive. Therefore, as Thanksgiving approached, I was determined to keep my spot in the Turkey Trot. While I switched my registration from the 10k to the 5k, I successfully completed the course on crutches. It was the slowest 3.1 miles of my life, but it satisfied my craving for challenge.

crutching along...
crutching along…
don't worry, we didn't actually run in these!
don’t worry, we didn’t actually run in these matching pants!

 

 While I did not envision spending my first semester of college on crutches, using Paratransit, relying on others to carry my tray in the dining hall, a lot of people (including Bart Yasso and Scott Jurek!) were intrigued by my story. It was an extremely difficult experience, but I found some caring friends. It gave me a greater appreciation for running and for my legs, and a remarkable sense of respect for disabled athletes. Largely because of this experience, I want to join Achilles International and become a guide for disabled runners.

Life threw me a beer bottle, and I learned to accept the unexpected.

Scott Jurek
Scott Jurek
Bart Yasso
Bart Yasso