Turning Challenges into Strength; My Medical Journey & Why I Travel

Life doesn’t hand out roadmaps, and if it did, mine would be filled with detours, unexpected turns, and a whole lot of resilience. From the age of four, my life has been a whirlwind of doctor visits, medical tests, and a search for answers that seemed endlessly out of reach.

But here’s what I’ve learned: Challenges don’t define us—our response to them does.

Growing Up in the Unknown

Imagine being a child who couldn’t keep up in PE, not because of a lack of effort, but because breathing itself was a challenge. Asthma was my constant companion, emergency room visits my second home. By the time I was 10, my medical file was thicker than most novels, and I had a new challenge—being underweight in a world obsessed with dieting the other way.

Yes, you read that right. My daily “prescription” included milkshakes, handfuls of cashews, and anything fattening. It sounds like a dream diet, but trust me, it was anything but. I wasn’t gaining weight the “right” way—I was just following instructions that never really worked for me.

By my teenage years, I was still under 100 lbs, a medical mystery with no answers and a body that never seemed to cooperate with me. My world became a cycle of testing, doctors, and frustration. When my bones showed signs of abnormal thickening, I was referred to specialists at KU Medical Center. That’s when the real detective work began.

Breaking Point & A Turning Point

Between growth hormone treatments, misdiagnoses, and being told I had an eating disorder I knew I didn’t have, I reached my breaking point. I was exhausted—not just physically, but emotionally. At 17, I made a bold decision:

💊 I stopped all 14 of my medications cold turkey.
💔 I hit rock bottom—bedridden, weak, barely eating, and unsure if I made the right choice.
🔥 And then, slowly, I started to rebuild.

With the support of my grandmother and the one doctor who truly listened—Dr. Lukert at KUMC—I began to piece together what was really happening with my body.

The Diagnosis That Changed Everything

At 17, I finally got my answer: Camurati-Engelmann Disease (CED)—a rare, chronic bone disorder that only about 300 people in the world are known to have. My bones weren’t thinning with age like osteoporosis. Instead, they were thickening, causing chronic pain that no one understood.

There’s no cure. There’s no perfect treatment. Some days are manageable; others feel impossible. But here’s the thing—I refuse to let it stop me.

Why I Travel & Why You Should, Too

I share this not for sympathy, but to remind you that life is fragile, unpredictable, and precious.

Travel is my way of taking back control. It’s how I remind myself that, even on the hardest days, there’s still a world out there waiting to be explored. I refuse to let my diagnosis define me. Instead, I chase sunsets in Santorini, soak in the healing waters of Iceland, and breathe in the fresh mountain air in the Alps.

✨ I travel because I can.
✨ I travel because I don’t take a single day for granted.
✨ I travel because one day, I might not be able to—but I’ll have the memories to hold onto forever.

So if you’re waiting for the “perfect” time to take that trip, to chase that dream, or to step outside your comfort zone—stop waiting. Life doesn’t come with guarantees. Go now. Go boldly. And don’t let anything hold you back.

📍 Where’s the one place you’ve been dreaming of visiting? Drop it in the comments—I’d love to help you make it a reality. 💙

#TravelForTheSoul #LuxuryWellness #OvercomingObstacles #SeeTheWorld #NoRegrets

I had to end this with another persons story about her struggle - as this is the BEST and closest explanation of what I go through daily that I could ever share. Sorry for the long post!

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But you don't look sick...the story behind the smiles! by Christine Miserandino

*This was originally written about her diagnosis of Lupus, and yet is is still 100% accurate for CED

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Culmarti Englemanns Disease (CED) and hurt all the time. I was shocked not only because she asked the random ques

tion, but also because I assumed she knew all there was to know about CED. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of CED. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case CED, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has CED.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If my arms are hurting that day, I need to wear long sleeves, and if my legs are hurting careful what pants I can get into, and so on. Then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as putting gas in the car, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was constantly in pain (varying degress), that cooking was probably out of the question anyway, by this time of the day. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding of CED, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

with gratitude,

Niki