My Story

My Mission Statement and MS Manifesto

My name is Christie and I am a number crunching photographer who loves riding really fast on my bicycle. I am an urban explorer (all that means is that I love to travel), I have an unnatural addiction to notebooks and I am curious about almost everything. I’ve been living with MS since May, 2010. And, I happen to write about it on my blog: the lesion journals. MS is new to me but I am not new to MS. My good friend Mel taught me everything I know, including how to find the funny while living with MS.

I am going to do everything in my power to not let my MS get in the way of doing things that I love. My MS Manifesto is a mixture of adventures, actions and hope. It’s a work in progress, constantly evolving because I don’t always know where life will lead. My journey with Multiple Sclerosis is not something I signed up for but now that I’m on this road, I want to, as Dr. Julie writes, “…make the hard parts easier and the good parts last longer.” This is how I will get through my life with Multiple Sclerosis.

I will…
  • Laugh, laugh, laugh! It really is the best medicine
  • Listen to my body. It often tells me when to rest so I should nap as often as needed
  • Ride my bicycle. In fact, now that I’ve done 15 miles and 30 miles in the annual Bike MS Bay to Bay event, I want to put more miles on my bike. I will try 100 miles for Team Luca’s 4th annual ride
  • Ask for help when I need it. This is difficult because I want to be independent yet sometimes having someone pitch in makes all the difference in the world
  • Jump off the Stratosphere in Las Vegas! I did it! What a rush! Check out the video (here).
  • Move my body. No matter how moderately. Exercise is an important element in being well with MS
  • Trek to Mt. Everest base camp. The only thing to decide? Climb the north side or the south side?
  • Regularly visit my hilarious and extremely well trained neurologist
  • Stay informed about the latest treatments. I will do this by doing copious amounts of research and asking a lot of questions. Right now I am very intimate with Gilenya (DMT) and Gabapentin for nerve pain. Essentially, I want to take the reins in making health decisions.
  • Help lift up our MS community by continuing to share stories and supporting my peeps, whether they are newly diagnosed or have been living with MS for a while. This is important to me because I do not want anyone living with this serious disease to feel alone. We’re all in this together.
  • Keep a symptom journal. I’ll do this by jotting down my symptoms in my document “Weird sensations that are bugging me right now”. While I believe keeping track of my symptoms is critical, I am notorious for “getting to it later.”
P.S. big thanks to Dr. Julie Stachowiak for motivating me to write my manifesto. You rock Dr. Julie! Your book is amazing and it serves as my roadmap to live as well as I can with my MS. You are a forever inspiration.

My Story

Back in July of 2009, just after finishing a great bike ride, a good part of the right side of my face, neck, and shoulders went about 80% numb. Naturally this freaked me out but we initially attributed it to a pinched nerve that likely resulted from incorrect positioning while cycling. The feeling remained for 10 days so I got an MRI.

In the meanwhile, I started visiting the bone cracker and while I felt great after my appointments, the tingling and numbing remained and spread to my right fingers and hand. The initial MRI scan revealed a small bulging disc and unidentified shadowing along my spinal cord. I scheduled an appointment with a neurologist and heard whispers of "MS" in my head. After my first appointment with the neurologist, we began to say the words "MS" out loud.

Yet after 15 vials of blood, 4 MRI's, 1 spinal tap (it didn't hurt!), EEG's, and countless doctors visits, I did not qualify for MS. My doctor initially diagnosed Clinically Isolated Syndrome (CIS) as caused by the two lesions on my spinal cord and because my brain was free of lesions.

In May, 2010, after a follow up MRI, we discovered a new lesion on my brain and my doc diagnosed MS. Wow. Now I am on a different journey as I explore what it means to live with this neurological disease.

I take a daily shot of Copaxone I take a monthly infusion of Tysabri  I take a daily dose of Gilenya plus 2,700 mg of Gabapentin (generic for Neurontin) every day for nerve pain which really gets me more comfortable. Yet, I have good days and bad days and I find myself asking "How will I feel today?" just about everyday.

Check out the pictures below - MRI's are rad! You can really see the lesions. The spinal cord lesions are the ones that cause me the most grief. The one on my brain qualified me for MS yet I have no symptoms with this one.

No symptoms with this lesion    
The lesions that cause the most grief
Thanks for stopping by! I would love to hear from you. What's on your manifesto? What's your story? Send me a note or leave word here on my blog. 

Best always,


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