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Karen DeLabar: This is Simply My Story – Orange Karen Anthology Countdown (Day 15)

By now, Karen DeLabar should need no introduction. She’s the “Orange Karen” we’ve been writing about on this blog for the past two weeks. She’s the reason we’re doing this anthology. She is our friend, our inspiration and our warrior. Today marks the deadline for accepting submissions to the Orange Karen Anthology. Some of you know Karen, some of you don’t. But none of you (save a few) know the whole story about Karen’s sudden, and deathly illness, and how she came out alive, swinging fists after a long battle.

She still struggles with typing, and often writes by hand before dictating it to her computer. I can only imagine how difficult it was for her to reflect on the past six months and try to put into words what happened. But she did it. This kid’s got moxie, folks. Oodles of it.

It is my absolute honor to share with you Karen’s story, written by the one, the only, the true Orange Warrior, Karen DeLabar.

Note: Karen has put up some pictures on her website which further depict her battle with Toxic Shock Syndrome and her recovery. While some of the pictures may be graphic, they show the marvels of modern medicine and they show the resilient spirit of our dear friend.

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This is simply my story.

It started like any other Saturday. Eric was rushing around trying to get the kids ready and I was being lazy not wanting to get out of bed. Until, that is, I realized what was happening this Saturday. That evening was our oldest daughter’s very first dance recital. I was beyond excited. If you know me you know I love theater, the arts, entertaining. The thought of my daughter following in my footsteps just makes me want to push her out of the spotlight and take her place. Just kidding. 😉

As the day went on I started to feel tired, run down. I brushed it off thinking it was just the normal mom feeling of having to do everything in a short amount of time. I remember swaying back and forth as I tried to perfect her braid and scolding myself for doing a half-assed job.

Lily ready to take the stage at her dance recital

Lily ready to take the stage at her dance recital

When we got to the recital I started to shake with cold sweats. Taking shallow breaths and hoping not to pass out in the wings, I watched my little ballerina hit every move. After her second dance I couldn’t stand any more and opted to go home to bed. After tossing and turning that night and the following day with a high fever, Eric took me to the ER Sunday night. The night nurses took my blood, found nothing out of the ordinary, gave me fluids and sent me on my way, diagnosing it as a viral infection.

Under this advisement I went home and spent all of Monday in bed as severe pain ravaged my body, especially in my neck, shoulder, and abdomen. By Tuesday morning I was vomiting and too weak to even stand. Eric and I actually discussed not going to the hospital because of cost but I soon felt too sick to care and insisted we go. We later learned that had I not gone to the ER that Tuesday morning I would have died Tuesday night.

The total time from onset to fatality, four days.

I spent all day in the ER and after test after test with no answer as to what my ailment was I was admitted into the ICU that night. The last thing I remember was turning to the doctor, pointing to Eric and telling her to make sure he ate something. Another doctor looked down at me and said, “Lie back, we need to intubate you.”

When Eric left that night I was just intubated, when he walked into the room the next morning I was hooked up to 13 different machines. My body went into shock and they couldn’t figure out why. Just overnight I lost blood flow to my hands and feet; the toxins then pooled where there was decreased blood causing an intense rash which then turned to blisters which popped open and left open wounds. Disgusting, angry, limb losing wounds.

I lost my left thumb almost immediately. The infection was causing my body to throw out random clots. I was also placed on four machines that are designed to pull your blood to your core. The machines saved my heart, and my life, but they doomed my hands and feet. My family watched as my extremities turned black knowing there was nothing they could do to stop it.

At one point I had 19 extra liters of fluid in my body. Think of a 2 liter bottle of soda. That’s a lot of soda.

The doctors were stumped, they had no idea what was causing my sickness. I was dubbed the sickest person in the hospital by the Dean of Medicine. I’m still waiting for my plaque.

My heart was only pumping at 25 to 30% and there was concern that my body wouldn’t be able to handle the severe attack of the infection. However, thanks to the sheer determination of the many doctors and nurses on my case, a day and a half after they started antibiotics I started to turn around.  At this point I was placed on hypnotics which allowed me to respond to the doctors but I would have no recollection of the events.

I woke up 10 days later to my husband and brother looking down on me with big goofy grins on their faces. Two days later we had a cause. A culture finally came back with toxic shock antibodies. My infection had a name, and it was Toxic Shock due to strep. Yep, your everyday strep got into my blood and there you have it. It’s cause is still unknown. It was NOT caused by tampons, or the mud run I had just raced in, or anything like that. Somehow strep got into my blood and tried it’s damnedest to kill me.

We were told that 8 out of 10 don’t survive what I went through. My doctors attribute my survival to three main reasons:

1. My age. I went through all of this, which includes mastering the bedpan, just a few short weeks of my 30th birthday.

2. My strength. Before my illness I was working out five days a week, sometimes twice a day. I would have loved to have been awake when the doctor told my mom, who used to criticize my workout schedule, that my physical strength was one of the reasons I survived.

3. I’m stubborn. My body basically refused to quit. They had me on enough narcotics and medicine to down a 300 pound man for a week, and yet I was struggling with nurses to remove my own tube, even tried to punch one who went to stop me. I struggled to let them know that I was still inside, that I was still fighting.

During that week and a half in the ICU I was placed on a dialysis machine, had several blood transfusions and more than one central line put in to administer medicines. The last one I had went straight into my neck and into a main vein; it was put into place right before I woke up. I kinda miss that one. They’d put in pain meds and before they were down pushing it all in, I would be out. Until the one nurse left the syringe in my neck and I didn’t realize it.

“Karen…” Eric asked me ever so cautiously, “is that a syringe hanging out of the side of your neck?”

I brought my hand up and lightly touched around what they called the IJ (inter-jugular) pick.

“Why, yes, yes it is.” And I went back to reading.

He spent the rest of the afternoon calling me “Frankenwife”.

After a month in the hospital and physical rehab facility I was released to go home on July 4th; a day that is now my own little Independence Day.  I thought I was in the home stretch, but my recovery was only beginning.

When the podiatrist first saw me he said the worst case scenario was double amputation up to my knees. No one should ever have to hear those words. I never felt so helpless in my life. I just kept thinking about my two little girls at home; how I could never dance or run with them again. He recommended a hyperbaric chamber to help circulation in my feet to aid in the healing. For 55 days I spent two hours breathing pure oxygen at twice the atmospheric pressure. I laid in that gigantic glass tube, completely closed off from the rest of the world watching “Frasier” reruns on Lifetime. It could have been worse.

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The hyperbaric chamber (L); Karen gets ready for one of many hyperbaric chamber treatments (R)

My afternoons were spent at various doctors, cardiologists, hand therapists, and surgeons.

With every appointment I continued to defy the odds. They told me that it would take at least six months for my heart to recover. By the end of July it was already back to normal. When August rolled around it looked like my feet were going to be saved, minus a pinkie toe.

My thumb was still the only question mark.

The first hand surgeon wanted to amputate it, sew my new stub of a thumb to my groin and grow a new thumb from there. Yeah. Let me just walk around with my hand down my pants for six weeks. I’m sure no one would notice.

But thanks to a second opinion I am now working with a brilliant micro surgeon out of the University of Penn. I am currently undergoing a series of surgeries to reconstruct my thumb using tissue from my arm.

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“Look ma, a new thumb!”

I don’t remember anything from those 10 days in which I fought for my life. A part of me wants to but looking at the sadness in my family’s eyes when they recall that time I’m guessing it’s for the better that I don’t. What I do remember is waking up to two whole walls of the ICU room covered in get well cards. Nurses and doctors would randomly come in, hug me, kiss my forehead and thank God I pulled through.  My social media sites, Twitter feed, Facebook wall, were filled with seemingly endless posts of prayers, well wishes and notes of people wanting to help.

I have never been so overwhelmed in all of my life.

I’ve learned a lot this past year, patience, humility but most of all what friendship and love really means. I’ve learned to be thankful for the smallest things and I’ve gotten pretty good at finding the silver lining in darker moments.

I learned to laugh at myself.

Everyone who looks at my hands and my troubled gait say they’re so sorry that this happened to me. But please, don’t feel sorry for me; never feel sorry for me.

I’m alive, and I’m in control of my recovery.

But I am sorry. I am sorry for my parents. They had to watch their only daughter’s hands and feet turn black before their eyes, knowing there was nothing they could do to stop it. I’m sorry for my husband who called up his parents to tell them to come say goodbye to me and how he had to figure out what to say to two little girls about their mommy who went to the hospital and didn’t come back.

But I’m most sorry for my two little girls who knew nothing of what was going on and just wanted their mommy to hold them. That’s who you should be sorry for, for my loved ones who had to watch me fight this and could do nothing to help.

However, that is all in the past. So instead of feeling sorry, I try to remember to celebrate. I’m here for birthday parties, holidays, smelling honeysuckle waft through the air on a cool June night. And yes, I’m even excited to be here to potty train our soon to be three year old.

Life is truly a blessed and beautiful thing. I have many reminders by way of scars, pain, and overall way of life that reminds what I went through to ensure that I have a life to live. Whenever pettiness and pride creeps in to ruin my day I just have to look down to my hands or feet to remember how precious life is and what really matters.

I urge you to stop and take some time to yourself and be thankful for all that you have because within four days it could all be gone.

I want to quickly give thanks to everyone who has worked on this site, submitted posts, submitted stories for the anthology, and is currently working on putting everything together. Another big hug and thanks to all my friends and family who have rallied behind us during this trying time. To my doctors, nurses, therapists, pharmacies, and hospital staff, thank you for your dedication to help others. And last, but not least, my husband, Eric. Yours was the last face I saw before I went out and the first one I saw when I woke up. I want to keep it that way. 

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A DeLabar Family Christmas 2012

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Defying the Odds: The Orange Karen Countdown Series

Happy December everyone! ‘Tis the season for twinkly lights on houses, packed parking lots at the shopping mall, and way more fruit cake than society needs. Christmas specials are already on the major TV networks and commercials and littered with stuff you’ve just gotta have.

All commercialism aside, this holiday season is a time to reflect upon the year and be with those we love. Every day for the next two weeks, we’ll be hosting a series of writers who have Big Love for a certain orange-headed warrior, Karen DeLabar. We love her, we feel inspired by her and we want to help her out. We hope you do too.

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The deadline for short story submissions is fast approaching – December 15th. Submission guidelines can be found here. But before you head over there, continue reading. Our good friend Susan Ethridge shares a very personal and touching story about her father, a man who defied all odds and lived a full life. A warrior’s life. Just like our Karen.

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My father was a very brave man. Very strong, and very stubborn.

He was born in 1933, in rural Texas, and at the age of five, he began to exhibit serious musculoskeletal problems. Medical care was limited – the nearest doctor was two hours away, and in that time and place, the type of specialized treatment he needed was practically non-existent.

By the time he was in high school, his spine was curved into a question mark. In his junior year, he underwent surgery, during which several of his vertebrae were fused in an attempt to slow the progression of his disease. The official name: severe scoliosis. He spent most of that year in a chest-to-hip brace.

His doctors told him that he would probably never be able to walk. That he would never be able to have a family, or hold a job. That he should resign himself to the life of an invalid and prepare for an early death.

Instead, he fought.

He recovered from the surgery and enrolled in college. He earned a degree in Accounting from Texas Tech University, and took over the family business – an industrial/agricultural operation in the Lower Rio Grande Valley.  He worked at least ten hours per day during the harvest season, in a business that involved tractors and welding and heavy machinery. Not a desk job. Not cushy at all.

He married my mother, and adopted her young daughter. And then he fathered my sister. And me.

In my entire life, I never saw him bend over to tie his shoe – he couldn’t. Instead, he would put his foot up on a coffee table or a stool, so that he could reach the laces. His right side was partially paralyzed and atrophied; he walked with a limp, and my mother had to alter all of his shirts and pants to fit the hump on his back and the odd length of his right leg. He lived with chronic pain, and yet he bore his struggle with such stoicism and determination that until I was eight or nine years old, I didn’t even realize that anything was wrong. He adapted. He overcame.

He wasn’t even supposed to live, but he did – and then some. He defied every doctor’s prediction. He ran a business and raised my sisters and me. He took us camping and taught us how to grow melons and gladiolas. He lived a good life. A good, big, rich, full life.

He died when he was 57. I was 20.

I thought I knew what it meant to be a warrior. After all, I was raised by one.

And then I met Karen.

To be truthful, we haven’t actually met in person. Our paths were brought together through a writers’ group on Facebook. I have only read about the disease that nearly killed her, the grueling surgeries, the gradual withdrawal from serious narcotic pain killers, and her incredible recovery.

I wasn’t there. I didn’t experience any of it first-hand. And yet, it all touches me to the core.

For my father, disease and pain and struggle were always a part of life. He never knew anything else. His only option – ever – was to fight. It was a moot point.

But Karen had a “normal” life. She was a young mother, a writer, a wife…buying groceries, taking her daughter to dance class, writing stories, doing her thing. She never imagined that she might face death at the age of 30, with two little girls to raise. In her wildest dreams, she never thought she would hear a doctor say “You might never walk again.” Her world was happy, simple, fulfilling…until the day she got sick. And from that day to this, life has been one long, arduous battle.

My father was one kind of warrior, and Karen is another. Maybe even stronger, maybe even more stubborn and more determined than he was. After all, the idea that life had to be fought for was all he ever knew. But that fact took her completely by surprise. And she rose to the challenge anyway.

Orange Karen looked death in the face and beat it. She lost a toe, and almost lost a thumb, and she still faces long months of recuperation and rehabilitation, but today, she is walking. She is potty training her younger daughter and celebrating Christmas with her husband and family. She auditioned for a part in her community theater’s production of “Little Orphan Annie.” And let’s not leave this aside: she also completed NaNoWriMo – a competition which challenges authors to submit 50,000 words of a novel in a single month.  She can’t type very fast, or for very long, so she did all of that by hand.

Karen, I wish so much that my father could have met you. He would have admired you, a lot. You are a warrior.

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Susan Ethridge works in marketing, and enjoys graphic design, painting, cooking and writing. She and her husband live in Texas with their two cats.