Body, Health
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My Daughter’s Mysterious Illness — And My Own

TueNight Illness Lupus Faith Mom Mother Daughter Family Love

(Photos: Courtesy Allison Czarnecki. Photos from left to right: Allison and her daughter as a baby, Allison’s daughter in the hospital getting tests, Allison’s daughter now; Photo collage: Helen Jane Hearn/TueNight.com)

Exactly one year ago, my teenage daughter got sick. Really sick. One day, out of the blue, she woke up and couldn’t get out of bed.

Up to this point, my then 14-year-old daughter had been a wildly healthy, state-championship swimmer who played the cello in an honors orchestra, earned straight A’s in all her classes. She was heavily involved in leadership positions in our church and in an assortment of other extracurricular activities at school and in the community. She’s beautiful, talented, smart, kind, friendly, and if you were to ask anyone from a neighbor to a stranger meeting her for the first time, “totally put together.”

And then on March 19th, 2014, she woke up achy all over, vomiting, with a high fever. The first day of illness, I just assumed my daughter had the same flu that was running rampant through our community; the classmates of both my children had been sidelined for days with a terrible flu. I had no reason to believe my daughter was experiencing anything different.

[pullquote]I was frantic about the situation. Frantic to make it all go away, to deny the possibility of history repeating itself in my previously gorgeously healthy daughter.[/pullquote]

On day five of nonstop vomiting, I took my daughter to her pediatrician who assured me, after a very thorough checkup, that my girl was another unlucky host of a wicked virus and nothing could be done medically to ease her suffering.

So we went home, and I did what I always do as a mother with a miserably sick kid at home: I stocked up on oranges and supplies for homemade chicken noodle soup, boxes of Kleenex, Gatorade, over-the-counter flu medicine, popsicles, books from the library and a plethora of DVD’s from Redbox. The two of us settled in on the couch of our family room to wait out the sickness, a pile of heating blankets and snuggly pajamas, barf bucket at the ready.

We waited, and waited, and waited for the flu to dissipate, but it never did. Five days turned into 10, turned into 20, turned into several trips each week to the Emergency Room at the hospital for I.V. re-hydration, then consultation after consultation with one pediatric medical specialist after another from all over the state of Utah.

In the middle of this nightmare, I played nursemaid and medical researcher, patient advocate and mother, on top of which I worked frantically to meet work deadlines of my own as a professional blogger, freelance writer and fashion stylist. I cancelled long-planned trips for work. I scrambled in between blood draws and doctor’s appointments to parent my second child, my young elementary-school-aged son with his own hectic schedule of extracurricular activities and schoolwork, including daily swim team practices in a different city. Nights involved a frantically thrown-together dinner, homework and reading, an early bedtime. And somewhere in the middle of this bustling and exhausting life, for weeks, and then months on end, my husband and I traded shifts around-the-clock nursing our increasingly sick daughter.

We ran ourselves into the ground, the two of us, juggling our various life responsibilities all the while trying to uncover the mysterious as-of-yet un-diagnosable illness. I was beside myself with stress and worry with absolutely no solution or end in sight. All of us were miserable and exhausted, hanging on to life by a thread.

At this point in the story, it’s perhaps time to mention that I have a host of scary autoimmune diseases, the most serious of which is Systemic Lupus Erythematosus (commonly referred to as Lupus), an incurable and barely treatable autoimmune disease characterized by the following symptoms as detailed by the Lupus Foundation of America, “extreme fatigue, headaches, painful swollen joints, fever, anemia,” among others. Lupus is a terrifying disease, one that affects primarily females of childbearing age, the onset usually starts at or around puberty. I first started showing symptoms of Lupus at the age of 14, the very same age of my daughter at the time she fell ill.

It took dozens of specialists from across the United States over 10 years to diagnose me with Lupus, during which time my life was filled with incapacitating illness and a terrifying fear for my future. Although not inherently fatal, complications from Lupus can often end in death. I’ve been sick more often than well, and having a child with an autoimmune disease was always my number one parenting fear, by a mile.

Lupus, as is true of many other autoimmune diseases, is believed to have a strong genetic component. The thought that I could pass on a terrifically handicapping disease, one which had impacted my life so powerfully, was enough to bring me to my knees. I know well the limitations placed on my life by Lupus. The daily, sometimes hourly, struggles as a chronically ill patient are those I wouldn’t wish on even the snarkiest of mortal enemies. I’ve had to pass on opportunities that still make my stomach turn. My undergraduate college career spanned a decade instead of the traditional four years because of my inability to take more than two classes at a time. I was too sick to do study abroad (a childhood wish), and once I made it past my Freshman and Sophomore years of school I was unable even to hold down the smallest of jobs; I was put on disability while I finished my coursework.

So in the middle of the nightmare with my daughter’s illness, I was frantic about the situation. Frantic to make it all go away, to deny the possibility of history repeating itself in my previously gorgeously healthy daughter, at the future I’d imagined for her from the moment I happily learned of my pregnancy with her all slipping right through my fingertips. I felt absolutely desperate to change the unchangeable.

You’re probably expecting me to say we finally figured out what was wrong with my daughter. In fact, we still don’t know what caused her mysterious illness.

Now, more than a year later, she still misses school periodically, goes to bed earlier than the rest of the family and often begs off social and extracurricular activities with friends because she just doesn’t feel well. There are fewer possibilities of diagnosis now than there were a year ago because so many diseases have been ruled out. It isn’t Lyme Disease or Leukemia, she doesn’t have a brain tumor or diabetes or Rheumatoid Arthritis, or even Lupus. Yet.

We may never know what happened during my daughter’s eighth-grade year, except that her body freaked out and has yet to calm down entirely. All I can do is moderate her stress level, feed her healthy foods and create a happy, organized home life.

It should come as no surprise to you that after nearly a year of medical ambiguity and unbelievable stress, and as soon as my daughter was “out of the woods,” my own body hit the metaphorical brick wall like a heat-seeking missile.

One day, at the end of a road trip and on our way home, I became so paralyzed with migraine pain and vertigo I ended up in an emergency room just outside of Las Vegas, screaming full-volume and vomiting uncontrollably. Once I was discharged and made it home, I stayed in the darkness of my room (actual, literal darkness) in bed for an entire month. I was hospitalized multiple times with a variety of symptoms, the most pressing of which was a brain shattering migraine that wouldn’t dissipate, regardless of medical or homeopathic treatment. And in the darkness of that time, it became clear to me I was at a crossroads of life: I could either A) choose to finish the job my body had started and let myself die (no metaphor here), which frankly would’ve been the easier option, or B) I could choose to start from scratch and rebuild my body and life in a healthy, conscientious, strategic and very careful way.

I chose option B) which I knew, even in the middle of the darkness, would be the hardest choice I’d ever make, and I was right. It was an excruciatingly painful choice, but at the same time, created the opportunity for the most beautifully fulfilling life possible. I eliminated all foods, people, things and habits that were unhealthy, or if not exactly unhealthy, at least not actively healthy. I sat through therapy sessions and made tangible lists for every area of my life to see what could go: work, physical stuff (clothes, shoes, makeup, you name it), friendships that had ceased being useful maybe before they even began, processed foods, TV shows I don’t really have time for, books that aren’t completely beautiful and inspiring. I eliminated all of them.

People often talk about how in the heat of the battle, or at the fulcrum moment of their lives, the purpose of life and the most important things within become crystal clear. I’d spent years of my adult life wishing I could have my own moment of clarity so I could eliminate all the crap from my life, to no avail. But in the very moment I made the difficult choice to live, I was able to look so clearly at my life and see the simplest, most important path, and how to get there. It’s a much harder path, but it’s far more beautiful and rewarding than I could’ve ever dreamed. I have truly blossomed into more joy and happiness than I believed humanly possible.

In the process of simplifying my life I created very rigid, strict boundaries for the people I will and won’t allow in my life, activities I will or won’t partake in, boundaries for my time and emotions and personal, strict guidelines for how I live my daily life. I get up at the same time every morning, go to bed at the same time every night and eat the same things for breakfast and lunch every day. I work between specific hours of the day while my kids are at school, and don’t check my email when they are home. I take time for myself in the middle of the day to take a power walk for nearly an hour, during which I listen to a vast array of audiobooks I previously thought I didn’t have the time to read. I eat healthy foods and do yoga, and I don’t participate in any negative relationships or work issues and if they arise, they are quickly eliminated. I’m completely amazed by the creative freedom I feel in every part of my life by having such strict and simple rules and rigid schedule for myself. Having a structure in place removes the need to waste even the smallest amount of brain energy for the unimportant things, leaving it open to do the things I love.

I realized in the midst of darkness, leaning deeply into my biggest fears, that the only way forward to light and happiness was to accept a very terrifying, and equally peaceful, personal vulnerability In the midst of that terrifying dark night, all the things that really matter to me became crystal clear: God, family, love and happiness.

One of my favorite writers, Henry David Thoreau, wrote in his famous book, Walden, words that so eloquently and perfectly encapsulate my feelings about this new chance I’ve been given at blooming into my happiest life:

Every man has to learn the points of compass again . . . Not till we are lost . . . not till we have lost the world, do we begin to find ourselves, and realize where we are and the infinite extent of our relations.” – Henry David Thoreau, Walden

Filed under: Body, Health

by

Allison Czarnecki

Allison Czarnecki is a writer, stylist, world-traveler, entrepreneur, speaker, blogger, lover of life and founder of Petit Elefant, an award-winning online modern lifestyle magazine. Allison also writes for myriad publications, her work has been mentioned in the New York Times, NBC Chicago, and the Salt Lake Tribune among others, and is the founder of SocialLuxe Lounge, an annual event for women in social media. She’s a frequent speaker at industry conferences, including Mom 2.0 and ALT Design Summit. Her best work is as a mother to her 15-year-old daughter and 10-year-old son, and wife to her foxy Polish husband with whom she lives in Utah, along with 4 chickens, 2 rats, a horse, and one terrible cat.

13 Comments

  1. Wow, Allison. What a beautiful piece. I love love love your words here, and I’m so happy to hear about your happiest life. So much love to you and S.

  2. I’m so glad she is feeling better, although I wish you had the closure of knowing why and that it won’t ever happen again. It was terrifying to watch from afar; I can’t imagine what it would be like to live through. Thanks for sharing this.

  3. Amazing post, my friend. So beautiful and full of wisdom. Think of you often. 😉

  4. Oh Wow Allison I had no idea and you would never know this! I just saw you in Chicago at BlogHer. I’m so sorry to hear about your sweet girl and your own illness. Thanks for sharing your journey and hope you are both doing better.

  5. This was so touching and so beautiful. I loved reading your wisdom that you gained, and feel so grateful for your example. You are an amazing woman, a fantastic mother, and just an all around great role model. Sure love you!

  6. I had my own fulcrum moment, but have been measured in the pace of making changes. Your story inspires me to keep doing what is best and healthy. Thank you!

  7. Lucretia says

    Thank you for taking the time to write that. It was exactly what I needed to read today.

  8. Stacy says

    For your daughter, unless they did a very in depth lyme test, I wouldn’t rule it out completely. Most test only check for one or two strands and there are many more that are showing up now. You may have to pay out of pocket, but igenex.com has a very thorough test that goes beyond what most doctors offices will test for. I suffer from an autoimmune disease as well and like you, I fear one of my children having to live this life. Taking back control is the best possible thing you can do- setting your boundaries and sticking to them are so important.

  9. Billie says

    I hope that you haven’t had to do what I have done, in respect to cutting people who are unheathy for you out of your life, but I have to ask, in case you have an answer.

    I have suffered from varying degrees of depression and anxiety my whole life, which developed into multiple personality disorder. For me, this was just life. No one ever noticed the symptoms and thought something was wrong, and I never thought anything was wrong because it was my normal. I was just a strange child who sometimes pretended to be someone else (eventually the other names became nicknames and we all responded to all of them, which I guess made it seem a bit less odd as I got older) and sometimes whined that getting out of bed was too hard and sometimes got a crippling sort of shyness and refused to do anything.

    Eventually I started working as a camp counselor, away from my parents for months at a time, and as I took hold of my own life and started making my own decisions, my other personalities would start to fade. At first I felt alone, abandoned, but eventually I realized that they came back whenever I needed them, whenever I felt threatened… which was usually around my parents.

    Anyways, the point is, I eventually distanced myself from my parents. They are emotionally abusive, passive aggressive, unhappy people who hurt me more when I try to help them. I spent 18 years trying to make them happy, and they spent most of that time telling me I wasn’t good enough. But they are my parents. And after not talking to them for almost 4 years, I feel this odd emptiness, and I want to get in touch with them, but I’m terrified.

    So I guess what I’m trying to ask is did you have to distance yourself from anyone that important in your life, and if so how did you manage it? Did you manage to find some sort of middle ground?

  10. Elizabeth Smith says

    I was told that I had Rheumatoid Arthritis as a young (3) age. After years of pain and almost paralysis I crashed at work. I had the flu that never went away. I was later after a year of medical tests that I paid for myself, diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. I also have Hashimoto’s disease and 5 years later diagnosed with diabetes. I didn’t even believe CFS was a real disorder and suspect that Fibromyalgia , thyroid and diabetes was the core of my problems. I also have extreme issues with depression and anxiety. I know that I am not alone and have found some great internet resources. I also use essential oils and have been blessed with some relief with them.
    I often wonder if there is an autoimmune disorder that has not been discovered yet that will address all of this. I too have pared my life down and focused on the activites and people who are most important to me.

  11. Nicole Roswarski says

    random question. But had your daughter had the Gardasil vaccine? I know they start it around that age and it has triggered many nasty auto immune responses in teens. If so, look up the truth about Gardasil.

  12. this. THIS! Is the reason that you are the ONLY blogger I still follow! So lovely, honest, & truthful. Things that I only hope people say about me 😉 <3

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