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

Guest Post: Anger to Appreciation

Written by Katie. Posted in Guest Post

The following is a guest post from my younger sister, Allie, who lives with a rare disease called Polyarteritis Nodosa Vasculitis.

 

For as long as I can remember, I have been angry with my body for one reason or another.

As a gymnast for 19 years, one might imagine the body image issues I struggled with. However, one might be surprised to learn that it started as young as 9 years old, with me cursing the “Dama Thighs” I had inherited from the Italian side of the family. They were big, bulky, and they rubbed together when I walked. This was especially tormenting in the gym, given that I spent 4-5 hours each day in a leotard, surrounded by other girls with long, lean limbs. I would catch a glimpse of myself in the mirror (which conveniently covered a large portion of the gym wall), compare myself to the girl next to me, and feel pure anger (dare I say hatred?) towards these unfortunate thunder thighs.

Then came puberty. Oy vey, puberty. I was angry with my body for developing faster, earlier, and simply more than my teammates. I had gone from a block of muscle to a curvaceous teenager in what seemed like overnight. Not only was I angry with my body for gaining weight, growing out of clothes, and getting boobs, I was angry that easy skills suddenly became harder. My swing was off on bars. My steps were off on vault.  My body hurt more than usual. Sever’s Disease invaded my heels and made walking miserable.

Then came “The Dreaded Black Line”. No, this is not the subtitle of a Harry Potter novel. It is the stress fracture in my right shin that I developed at the age of 14 and struggled with endlessly for the next 6 years. I was angry that, out of everyone, I was the one to get this stupid fracture. It tormented me physically and emotionally. Months of crutches, followed by months of working my way back into shape, followed by months of crutches, and on and on with the cycle. I was angry that I was forced to be sidelined, and on the rare occasion that I got the green light from my doctor, I had to spend all of my time and energy just working my way back to the level that I was on before. There was no progress, only square zero to square one. This anger came to a head in college, when I finally succumbed to having a titanium rod surgically implanted in my tibia. I was angry that all the rehab and work I had done over the past 4 years in order avoid this surgery flew out the window with one meeting with the team physician. I was angry that my college experience, much like my high school one, was shaping up to be centered around one measly, never-ending stress fracture.

Then came the PAN. For those who already know my story, please bear with me as I back up and bring others to speed.

At 20 years old, I woke up one morning with stiff, achy shoulders. I went about my day, figuring that I was simply sore from yesterday’s workout. The aching gradually got worse as the day went along, but I brushed it off, went to class, went to the pool with my friends, and took a hot shower that night. The next morning, I woke up to find myself in debilitating pain. Every single muscle, joint, tendon, bone, eyelash (okay, maybe not) was excruciating. After much encouragement from my mom, I navigated campus in slow-motion and found myself at my coach’s office, where I collapsed on the couch and sobbed with pain and fear. Something was wrong, and I didn’t know what it was.

Rather than go into the nitty-gritty (I could go on for hours), I will cut to the most important parts. The team physician did basic lab work and essentially played “Eenie Meenie Miney Moe” until she landed on a diagnosis of Parvovirus B19, a common virus that comes and goes without much to write home about. That was great, until this so-called “virus” continued to pick up steam. I had gone from achy joints, to nightly fevers, stomach pain, frequent vomiting, and near exhaustion. More doctors came and went with no diagnosis or treatment to offer. After months of suffering and crying out for help, my athletic trainer arrived at my apartment in the middle of the night on December 12th, 2008 to take me to the hospital. Little did I know, I was about to embark on 48 of the most difficult days I will probably have to endure for the rest of my life.

Over the first couple of weeks, my condition rapidly deteriorated to the point of vomiting uncontrollably, experiencing excruciating abdominal pain evening after evening, and having consistently elevated blood pressure. I had seen cardiologists, infectious disease specialists, rheumatologists, and gastroenterologists; all of whom looked at me with wonder and sympathy, but no diagnosis. On Christmas Day, I woke up with a severe headache, and later that night, I had 2 grand mal seizures. I spent the next 2 days in the ICU being cared for by doctors who did not know if I would live, and if I did, whether I would have brain damage. Somewhere along the way, a doctor had an inkling and ordered a kidney biopsy (essentially the only semi-relevant test I had not yet had). This test ended up being the missing piece of the puzzle that led to my diagnosis of Polyarteritis Nodosa Vasculitis and, ultimately, saved my life.

After all was said and done, I had lost 40+ pounds, fought for my life, been poked and prodded more than anyone ever should, and been started on an intense treatment of corticosterioids and immunosuppressants (chemotherapy).

Much like a lot of people who suddenly find themselves suffering from a rare and potentially fatal disease, I briefly caught a case of the “Why Me?” Syndrome. I felt sorry for myself and I was sad that I had to go through this, especially at 20 years old. I quickly snapped out of this, but moved full force into the anger phase.

In the initial stages, I was angry with my body for collapsing on the hospital staircase because my legs were simply not strong enough to carry me up the flight. I was angry that I was put on huge amounts of prednisone and was “going to get fat”. I was angry that I had to go home to Michigan to rest and recover, rather than stay on campus. I was angry that I had to take a full semester off of school, and even make up finals I had missed while I was hospitalized. I was angry that some people I had considered to be good friends, disappeared when I needed them most. I was angry with my body for putting my mind through everything that it had.

I would say that during my recovery in Michigan, my anger peaked. I was mad that, true to my fears, I quickly gained all 40 pounds back (and then some). I was mad that the chemotherapy was thinning my hair and taking away all the curl. I was mad that I had a PICC line in my arm that I had to get flushed several times per week, that I had to cover to shower, and that got in the way of all my clothes. I was angry that I had to watch my teammates compete in what should have been my best season from the laptop on my couch. I was angry with my body for not getting better faster. I was angry that I would vomit nearly every morning, no matter what I ate or where I was. I was angry that I couldn’t exercise or swim. I was angry that my body had to go and get such a rare disease that no doctors knew what it was and had to Google PAN just to figure out what to do with me. I was angry that I wasn’t tapered off pain medication correctly, and ended up going through Dilaudid withdrawal because my body had become so dependent on it. I was angry that in subsequent bouts of stomach pain, it would take far too long to get any help from ER doctors because nobody knew what to do or thought I was a drug addict coming in for a fix. I was angry that my body was not cooperating and that it had turned my life into a medical nightmare.

As I started getting a little bit better, I learned to cope with the anger better. Don’t get me wrong, I was still mad as hell, but I had started rebuilding my life– moving back to College Park, starting school again, rejoining my teammates (without gymnastics). To be honest, I stopped having time to dwell on my anger and found myself diving head-first into life.

Now that I am in remission and have gained some maturity, I am able to look back on all of my anger– starting at age 9– and see the irrationalities. By no means am I saying that I no longer get angry with my body, because trust me, it is still a struggle. I am mad that my gymnastics career was forced to end in the way that it did, that I will probably have to take medication for the rest of my life, that exercise is so freaking hard now, and that I simply don’t get to live life like a normal 24-year old would. I am not thrilled with my weight, my thin hair, or my bouts of fatigue. But, for the most part, I am so incredibly amazed by this body of mine.

This body has been through and experienced things that very few people’s bodies have. This body of mine came so close to giving up and dying, but at a crucial moment, it decided that it wasn’t done living yet, and clawed its way back. Sure, this body of mine got sick, but even more impressive is how it fought like hell to get better. This body has withstood things that other bodies may not have. This body of mine ran 3 miles yesterday for the first time in 4 years, and didn’t collapse with exhaustion. This body of mine is a truly incredible piece of equipment that I am trying so hard to love, respect, and appreciate. Besides, this body is the only one that I will ever have, so I might as well learn to embrace it, better it, and treat it kindly.

 

“Enjoy your body. Use it every way you can. Don’t be afraid of it or of what other people think of it. It’s the greatest instrument you’ll ever own.” -Mary Schmich

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