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Day 78: Journey

This is Day 78 of the Positive 100, a countdown to Rare Disease Day 2014 and an exercise in being positive despite it all.

People talk about so very many things as journeys. Entire lives. Vacations. Bouts of self improvement. And they all are journeys. Through all the twists and turns. The ups and downs. The back tracking. The lost ways. The hidden treasures.

Where are you headed?

I’ve been on quite the journey myself. For your sake, I’ll limit my rambling to my post-college life.

I was in one catastrophic car accident where they told my mom I might never walk again. I lost 125 pounds so I could run a 5k a year later. I quit my first job on New Year’s eve, but I met one of my dearest friends to this day there. I lost my next job because I went back to school at night (they didn’t hire me when I first applied because I needed to use a walker from the aforementioned car accident).

I ran my own business (terribly). I went back and worked at a non-profit affiliate of the University of Illinois and started an MFA because it was free – I got in 2 classes. Working at a newspaper that was also a non-profit was a terrible idea. While I was working there, I was traveling 3 hours each way at least twice a month for treatments for the CRPS I developed after a running injury.

I spent a holiday season with an intrathecal catheter and a home health nurse. That is the Christmas I visited the ER and the New Years that I had to carry a massive purse everywhere to hold my always-connected drug pump.

I have now had 28 lumbar sympathetic nerve blocks. I’ve had 2 spinal cord stimulator surgeries and 5 ketamine infusions. I am nearly 30 and live with my parents because I could not cope with the pain, keep a full time job and take care of myself. I lost a boyfriend because he couldn’t cope with my pain.

I can’t draw like I used to because a major reaction to a drug caused permanent nerve damage. I am the flakiest friend ever because so often how I felt when I made plans is no longer how I feel when I go to bed. There are days upon days of soul crushing pain. Days where I think someone even thinking about talking to me would be devastating.

I keep finding more things to be allergic to. The list is now wheat, shellfish, cauliflower, morphine, immitrex, flu shot, dilaudid, droperidol, topamax and chloraprep (found that out this week).

It all seems so down. It might sound like I’ve been in a free fall since 2008.

But I am most certainly not. I am just trying to climb a mountain (ok, maybe the face of a cliff).

That car accident forced me to battle some major demons relating to my self worth. Losing my job (that I hated) forced my hand into finishing a certificate in graphic design.

The job that barely paid enough gave me just enough experience to land my current gig, where I am working as a web designer with some of the best people in the industry and maybe the planet. This time around the spinal cord stimulator is working and my body does just a little bit more than it was.

I learned that I have become a finalist for the Wego Health Activist Awards this year, which is incredible because I never set out to advocate for anything. Well, except maybe for butter and sugar and a healthy dose of cupcakes as therapy. But the words just kept coming. I was creating food that was safe to eat while gluten-free without sacrificing. A project that started as post it notes with inspirational quotes to keep me going turned into a personal design project and eventually this here blog.

My words started to matter. I had a story that could show others that they are not alone. And sharing my story, my struggles freed me. I no longer had to hide the CRPS from my boss and coworkers.

I still haven’t managed to take over the house of Chanel, but that’s ok. My destination has shifted a bit. I am also not going to be a media analyst for the NSA or a language specialist with the CIA. I might not turn out to be a web designer, a writer or a photographer. I am pretty sure I am all three of those, and it is where I think this compass is aiming me.

I am growing. I am learning. I am loving. I am living. I keep putting one foot in front of the other. I am keeping these eyes front. I am on this gosh darned journey and I am going to be a freaking awesome cruise director of my life. Really, I am.

I am finding my way without a map. I’ve managed to take a few detours without getting completely derailed. 

PS this facebook video thing is actually pretty cool (and relevant).


Where are you going? What is your journey? Share your answer on social media with the hashtag #100positivedays on TwitterInstagram and Google+

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