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.

* * * * *

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.

2012-09-11 at 08-00-33 2012-09-11 at 08-12-20

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.


“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. 

2012-12-06 at 18-28-37

A DeLabar Family Christmas 2012


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

  1. Andrew F. Butters

    I can remember following you on Twitter a while ago. I didn’t really know you but I saw some tweets about you being sick from common friends and was concerned. I don’t like seeing people suffering or in pain. When I heard that you were getting better I was thrilled, but it wasn’t until this November, during NaNoWriMo, that we really interacted that much. It was in that month though that I realized what a truly wonderful person you are and how I am so fortunate to be able to call you a friend. I hope you realize how much of a difference you have made in the lives of those around you by simply being who you are, loving with your whole heart, and never giving up.

  2. rbwood

    I remember being away for a few days and coming back to check in on my online friends to see a sea of Orange on sites we’ve been playing on for years. The support and love that goes out to this day is the most genuine love I’ve ever experienced beyond my own family. We’ll always be here for each other. And this anthology not only will provide additional funding for the obscene mount of medical bills that have been racked up, but will stand as a tribute to a woman who kicked some serious ass and will continue to do so. We love you! #GoTeamOrange


    1. Karen DeLabar

      Thanks so much, Richard! I am so happy that we met last year and I get to call you friend. You never cease to bring a smile to my face. Thank you for that. 🙂

  3. Jennifer Gracen

    Rereading about when you were in the hospital reminded me of the abject powerlessness and terror I felt during those days… you are my best friend. Not being able to talk to you gutted me. I sent you texts, just because I had to keep talking to you, counting on the fact you’d see them when you woke up. That you WOULD wake up.
    Now I read this and am crying, but they’re tears of relief and joy (once again – Queen Waterworks, you know me) that you got through it all and are here to write a post like this and are okay and have a beautiful family photo that says it all: life is good. I am here. We survived this are will continue to thrive.
    I love you with all my big goopy heart. You asskicker, you.

    1. Karen DeLabar

      I have been, but it was the hand I was dealt. Nothing I can do but adapt and move on. And I am. Thank you for reading!

    1. Karen DeLabar

      Case, when I learned what you did for Eric when I was in the ICU I completely lost it. I wish there were more people like you in the world. Thank you so much for thinking of us. 🙂

  4. lynmidnight

    Ah, Karen… I knew parts of the story, but now I am amazed at the whole story. I admire you for your attitude and for the fight in you. I remember a quote I found once… “it’s not the dog in the fight that matters, it’s the fight in the dog”, or something like that. You’re an inspiration to people now, and I think this is yet another blessing. Now people will read your story and remind themselves what matters, what they can do to fight, and all that jazz. Applause and hug!

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  11. Beth

    Hi Karen,
    I can relate to what you went through as I am a TSS survivor myself. Tho mine was tampon related and happened 30 years ago…reading your story reminded me how lucky I am as well to have lived through it. It is something I will never forget!

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  16. Maddie Weinzierl

    My name is Maddie and I am 18. This march I reached my third year of life since a priest came into my hospital room and read me my last rights. I also had TSS. I had woken up one morning with a temp of 104 and was continuously vomiting. By the time I got to the er I couldn’t walk. For the next 3 weeks I was in a coma and my mother was told I probably wouldn’t survive the infection. With lots of meds and great doctors I beat it. I’m so glad you’re alive and well, most TSS patients aren’t so lucky. Congrats on you’re recovery!

    1. christinaesdon Post author

      Maddie – Thank you for sharing your story. We’re so glad you’re alive and well too!

    2. Karen DeLabar

      Hi Maddie! Thank you so much for stopping by the site! What a wild ride TSS is, huh? I’m so glad to hear that you celebrated your 3rd year of life since TSS. I’m coming up to my first year and I admit, I’m a bit anxious. I’ve come a long way but at the same time I have a long road still ahead of me. Here’s to many more years as TSS survivors! *clink* 😉


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