Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

2014 Life as a Zebra Foundation Benefit Concert Speeches

Written by Katie. Posted in Favorites, Foundation, Fundraisers, Invisible Illness, Memorable Experiences

For documentation sake, the following are Allie and my speeches from Life as a Zebra Foundation’s third annual, “An Evening With Tony Lucca and Chris Trapper to Benefit Invisible Illness Awareness & Research” held at the Kellogg Hotel and Conference Center on April 12, 2014.

KATIE’S SPEECH

Live. A word that has come to mean a lot to me the last few years.

Allie and I have always talked about getting tattoos. The problem is I never knew what I wanted to put on my body forever.

Forever.  It was that word, that got me every time I thought about it. What could I put on my body that would still mean something to me when I was 50? 70? 100?

Then you add in the fact that I have Ehlers-Danlos Syndrome, a connective tissue disease. EDS can affect skin. I have the mild skin type. Tattoos go on skin. So this made me leery as well.

When Allie got home a few months ago for Christmas break, one of the first things she said was, “let’s get tattoos.”

The first thing I said was, “no.”

She went on to tell me she had thought about it for over a year and she wanted to get the word, “live.” Allie reminded me that this Christmas would be her fifth anniversary of the night she almost died from Polyarteritis Nodosa Vasculitis. To her, getting the word “live” would be a constant reminder of how far she’d come, how hard she’d fought, and what she should strive for each and every day.

I had sort of an a-ha moment with that. It clicked.

Live.

To have life.

How often do we take this for granted? In our day-to-day lives, it is so easy to forget that even getting out of bed is a gift. Let yourself think about that for a moment. Despite physical struggles, or illness, or pain, when was the last time we gave gratitude for our good health, or for the fact that we simply woke up today?

I remember the days when I did gymnastics 30 hours a week. Or the days I would teach all day, go running after work, do school work at night, take masters classes, and still go out on the weekend. I’m pretty sure I felt invincible. I never once thought that something could happen to change all that.

Well, it did. And fast. I was thrown a major curveball called sickness. Not the kind of sickness that goes away after a week of rest, but the kind of sickness that sticks around for good, and totally flips the life you once knew upside down.

Instead of running, I sat in a wheelchair and had no idea why. Some doctors thought I was losing function of all of my bodily systems, not knowing if I was dying or not. Some doctors thought I was completely fine, and just depressed because I did not look sick.

It was the scariest experience of my life. It also woke me up.

In 2010, after a long search for answers, I was finally diagnosed with Ehlers-Danlos Syndrome, a genetic, connective tissue disease, and Dysautonomia, a disease of the Autonomic Nervous System, which as you may know are often hidden or invisible illnesses, as they are with me. 

As with any hard, life changing event, I learned a lot.

Mainly to live.  Live in a way that keeps me healthy, happy, and strong.

I now rehab 3-4 days a week to keep my muscles strong to try and stay out of my braces and wheelchair.  I have returned to teaching half-time after having to take a year off. I shower every morning before I go to school. I then sit or lie down to allow the blood that has pooled in my legs and stomach to return to my brain, so that I do not become sick, and I can go to work.  I go to school and it is there that I have mastered the art of alternating sitting and standing so I do not pass out. I eat a lot of salt to keep my blood pressure up and I drink three liters of water everyday to increase my blood volume. I take medications to slow my heart rate down and to raise my blood pressure.  I sleep every afternoon so I can function the rest of the day. I receive close to 100 shots every month in order to help stabilize my joints.  I maintain my health with many specialists all over the Midwest. These things are just a part of my new “live” now. But there is so much more.  

I also learned to live the life I want, because there are no guarantees.

I learned a lot when Allie was fighting for her life. I remember sitting by in Michigan with the phone glued to my hand waiting for updates from my parents, while Allie was in a Maryland hospital for seven weeks. It was crazy how she had gone from traveling the world competing as a world-class gymnast to not knowing if she would make it past her 21st birthday…At the point that it seemed likely we were going to lose her, I screamed.  I cried.  I prayed for her to keep fighting. 

And she did.

I watch this baby sister of mine now, and I watch how she lives. Fully. In remission. With no apologies. No regrets.

I also watch my friends and family who I am surrounded by daily; so many other examples of inspiration who live everyday like it’s their last despite crazy amounts of adversity.

These are the people who remind me to live, simply by living their lives…

Live. A word with a meaning that far surpasses the literal.

I continued to think about what it could mean to have that small, yet powerful word, tattooed on my body forever.  It could be a reminder of everything I believe in, but sometimes lose sight of while I am living my life. Ironic, huh?

Things like to live in the now. To live and let go once in a while.

To live by appreciating the little things.

You know, the things that really matter when it all comes down to it? 

Like my incredible support system of friends and family members who remind me “why not you?” if I fall into one of the “why me’s”…The support system who I know will always be there to support me, love me, and remind me how blessed I really am.  

Those little things that speak volumes; being with the people who have become my people, the pee your pants kind of laughing, dancing, the precious days I feel symptom free, the days when I can say I may not be able to run today, but I have two legs and the sun is shining… Yup. Those things.

Live.

It is important for me to remember that I may not be able to control what others do or say, but I can control how I respond to it, and how I am going to live with it. I’d like to speak to invisible illness awareness for a moment.   

I urge everyone to think twice the next time we are quick to judge someone.  Take it from Allie and me, you cannot tell what a person is going through or dealing with just by looking at them.  I cannot tell you the amount of confused or even angry looks I have received on the days when I have to use my handicap sticker or wheelchair. I realize that I cannot expect people to just understand, if I don’t try to explain myself, and what I go through.

This may sound corny, but I also believe that I was blessed with these diseases to help others try and see things just a little bit differently. To try and raise awareness and funds for these often overlooked diseases that have no cure through our foundation

Live.

I thought about all of this and more for three weeks.

During Allie’s last week here, she brought up the tattoos again. This time, I told her I would go with her but I still wasn’t sure. I let her know that I had come to love and embrace and understand the word “live,” but I still had the EDS piece to explore.

In true Katie fashion, I researched…and researched some more. I’m pretty sure I drove the people around me crazy. Everything I learned, ended up with the same verdict: Some did great. Some didn’t. It depends on your body. You won’t know until you try.

 With that information, Allie and I took off for the tattoo shop. As Allie took her “live” like a champ, I chickened out and decided to do a little more research.

Two days later I asked Allie to go back with me. I felt the calmest I had in the last few days. I was ready. I knew I wanted that word forever. I did it. I loved it. Yes, I even cried a little.

Thinking about it, it’s kind of funny. My whole tattoo experience seemed to encompass everything I had come to love about the word “live” itself. Taking leaps. Letting go. To live fully, in the now, and with no regrets. Knowing that nothing is guaranteed. Loving that Allie and I are both branded for life with a word that means the world to the both of us, after what we have been through, and what we have come to believe with our entire being.

I lived that day we got our tattoos. And since that day, it has served as a reminder that no matter what comes our way, to truly live is the answer, no matter what…it is the most important thing we can do.

Thank you

Allie’s Speech

Good evening everyone.

I’d like to start off by telling you all a little story about my dress.

On February 8th, 2 months before today, I reserved a beautiful gown from a high fashion, online dress rental company. I had rented 2 different sizes, and they were to be delivered to my parents’ home in Lansing yesterday. I also rented some earrings, and within the first few days of reserving the dress I had bought a beautiful pair of gold strappy sandals.

I loved that gown. It was beautiful and elegant and I couldn’t wait to wear it.

I spent the next 2 months Googling images of hair updos that I wanted. I had temporary hem tape delivered to Lansing, so that I wouldn’t have to worry about remembering to pack it and it would be there when I arrived. I daydreamed about the Angelina Jolie-like poses that I would strike all night, with my not-so-long leg sticking out of the fabulous slit in the skirt.

2 months before today, I had my benefit ensemble ready. All you ladies know how great of a feat this is, and it felt awesome to not have to worry about it for the next 8 weeks. I had it all planned out, and I WAS PREPARED.

Well…

The dress I am wearing tonight is NOT that dress I had reserved 2 months ago. My hair is different than originally planned, I have different shoes on, and I am not striking any high slit Jolie-inspired poses tonight.

I received an email on Thursday afternoon, yes THIS Thursday afternoon, telling me that both sizes of the dress I reserved were no longer available.

My dress that was supposed to be delivered THE NEXT DAY was unavailable, and would not be arriving.

2 days out from the benefit, I had no dress.

I had myself a brief little cry, put on my big girl pants, and called the rental company. After multiple phone calls and a taste of the Dama-girl sass, we negotiated a deal. They agreed to overnight deliver 2 different dresses and 2 pairs of earrings to Lansing for no additional charge, in the hopes that one of these would work.

Of course, neither did.

So, as of 3:00pm yesterday, I officially had no dress to wear for tonight.

My mom and I sprung into high shopping gear, which is actually one of our best and favorite gears, and as of 4:30pm yesterday, I had found and bought this beautiful dress and these brand new shoes.

Even better, I didn’t know until checking out at the register that the dress was on sale for 71% off, and the shoes were 50% off.

Holy cow. It was meant to be.

So, as you can see, I AM wearing a dress this evening. No, it’s not the one I had ordered 2 months ago and had spent weeks daydreaming about. But it’s a wonderful dress that fits me, my personality, and makes me feel good about myself. And, it was on surprise sale. Who doesn’t love that?

2 months ago, I had planned. I had prepared. I had a foolproof plan for my outfit tonight.

But that didn’t matter.

10 years ago, I also had a plan. I was going to continue working hard at gymnastics, and earn a full scholarship to the east coast school of my choice. I was going to compete for that team with pride for all 4 years, and I was going to lead them to victory. I was going to retire from the sport of gymnastics feeling accomplished and fulfilled. I was going to be a healthy and happy 20-something year old who had nothing stopping her.

Well, much like my dress plan, this plan changed too.

I did continue working hard in gymnastics, and after years of a never-ending shin stress fracture, I proudly accepted a full scholarship to the University of Maryland. I competed for this team with pride and passion, anchoring bars as a freshman and working my way into the beam lineup. I was making my plan happen.

And then, 2 years into my college experience, I got sick. Mysterious aches and pains quickly spiraled into nightly fevers, persistent nausea, debilitating fatigue, and intense abdominal pain.

I was 20 years old and in prime physical shape. It had to be just a terrible virus that would go away on its own in a couple of weeks. I HAD PLANS.

Well, it didn’t go away.

To make a very long story very short, I spent the next 7 weeks of my junior year in a Baltimore hospital. I had literally hundreds of tests and diagnostic procedures done. Doctors were stumped, and numerous times I was told that I needed Dr. House from TV.

Over the course of my 7 weeks there, I had lost 40 pounds. I was barely able to get out of bed. Despite having enough pain medication running through my veins to sedate a 300-pound linebacker, I was still in horrendous pain.

On Christmas day of 2008, I had a hypertensive attack and suffered 2 serious seizures. On subsequent CT scans, the doctors told my parents that it looked like I had suffered brain damage, and they weren’t sure if I was going to make it.

At 20 years old, my plans had unexpectedly shifted from winning college gymnastics competitions, to doing my best to survive the mystery disease that was taking over my body.

One special doctor had the insight to demand a kidney biopsy, and I credit him and this procedure for saving my life. From this kidney biopsy the medical team was able to diagnose me with Polyarteritis Nodosa Vasculitis, or PAN. PAN is an idiopathic autoimmune disease of the blood vessels, meaning that for some unknown reason, my own immune system began attacking my own blood vessels, interfering with blood flow and potentially leading to serious organ damage.

With this diagnosis came treatment in the form of corticosteroids and chemotherapy. There is no cure for Vasculitis, but if it is caught early enough, there is effective treatment for the symptoms.

Gymnastics was no longer an option, and I had to hang up my grips 2 years earlier than expected. I was unfulfilled and angry by this forced early retirement. THIS WAS DEFINITELY NOT THE PLAN.

For the next 3 years I struggled with the side effects of the horrible yet wonderful medications I was on, in addition to frequent flare-ups of stomach pain and nausea. I eventually returned to college and was welcomed back as a sidelined member of the gymnastics team. But it still wasn’t my plan.

After a particularly rough patch of sickness and depression, I decided it was time to snap out of it and look at my life through different glasses.

I could either continue mourning the loss of the life that I had planned, or I could decide to look ahead and make new plans for my life. My life with Vasculitis.

I chose to make new plans.

I cheered on my teammates as loudly as I could. I graduated Cum Laude from Maryland and got my first job in mental health. I met my wonderful boyfriend Gabe. I took up running and made the conscious decision to take charge of the part of my health that I COULD control—diet, fitness, doctor appointments, medication management, happiness, laughter. I started graduate school and I am now only 1 semester away from graduating with my Master’s.

I made new plans.

It certainly wasn’t easy to do, and I have had many more hospitalizations and dark periods over the past 6 years. But this sudden diagnosis of PAN at 20 years old has taught me more about flexibility, living life to its fullest, and rolling with the punches than I am sure I would have otherwise learned at my age.

In life, we are all going to have moments that do not go according to plan. We are all going to have times that are tough. At some point we are all going to be faced with the decision to either dwell on the things that didn’t go right, or to embrace our new realities and make new plans for the future.

 I hope you all decide to look to the future and make new plans.

 Once I decided to embrace change and look forward, I am positive that my experience with PAN changed me for the better.

 I am certain that my experience with PAN is what helped me laugh my way through the rental gown scandal that has consumed my life for the past 48 hours.

I am positive that 99% of the new plans we make will turn out to be more fulfilling and satisfying than the original ones.

I am positive that I like this turquoise dress better than the one I had reserved 2 months ago. Because it is real, and because I made it happen.

 Thank you.

 

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