4,000,000 Americans suffer from Sjogren's,
a debilitating autoimmune disease
causing dry mouth, dry eyes and joint pain.
There is no cure.
9 out of 10 patients are women.
I am one of those women.
Since being diagnosed in 2003, I have lost my career as a photojournalist to Sjogren's. I struggle daily with joint pain and I strive to raise awareness about this fairly common but little known disease.
After having our son, I met some new amazing mommy friends in my community of Boulder Creek, Calif., who have become such a source of support and understanding as I struggle with Sjogren's. Last year I asked some of them if they would join Team Sjogren's and walk or run 6 miles for me in the Santa Cruz Wharf to Wharf race and fundraise for the Sjogren's Foundation. We set a very modest goal and tripled it by raising nearly $15,000! So this year our goal is to double it!
The Team Sjogren's Wharf to Wharf 2011 fundraising goal:
30 teammates to raise $30,000!
This may be a loftily and ambitions goal, but we are setting our sights on it and we'll see where it take us. Sjogren's is a disease that needs more awareness, needs better treatments and needs a cure. This is why my mommy friends and I have once again joined up to fundraise for the Sjogren's Foundation.
Find us, join us and support us:
Read my story about how Sjogren's happened to me, join Team Sjogren's and donate to me or one of the other Team Sjogren's teammates by going to my FirstGiving page:
Follow the latest Team Sjogren's news, happenings and training schedule on our team's Facebook page:
Learn more about Sjogren's and the Sjogren's Foundation by going to Sjogren's.org and click here to watch a video about Sjogren's that features me and my story:
This year, I also want to share my personal Sjogren's journey with all of you. Below is my story of how Sjogren's happened to me. Please read on and donate generously in my honor.
My Sjogren's Story:
In 1999, I was 27, working as a freelance photojournalist for Newsday in New York and feeling on top of the world! I was living in the best place in the world and my career was taking off. Nothing could stop me now, except Sjogren’s.
Oh, it didn’t stop me all it once. It started slowly, sneakily, with just my mouth. Weird dry stuff stuck to my teeth and lips. And the burning that some foods caused! It was all strange. So I just needed a bottle of water all the time and had to wipe stuff off my mouth. I just kept working hard and making my way in a very competitive world. I had no idea my body had become “allergic” to itself, that my body was making antibodies against me, my own body.
Then started the joint pain, first in my wrists causing numbness and pain. Eventually, I had pain so bad in my shoulders, hands, elbows, ankles and feet that I had trouble shooting with really big lenses. You know, like the ones you see the big photographer guys carrying around at a collage football game? Well, that was me, but I was in pain. So much so, that I would need help getting from my car into the house at the end of the day. I couldn’t even carry my own camera bag.
I felt like I had the flu everyday. I was so tired, so hurting and so had to keep working. This was my dream career. What I had gone to school for. What I had been born for. I was a third generation journalist in my family. It was WHO I was. But my body was attacking itself. I still didn’t know it though. I just thought I needed more exercise, maybe I just needed to eat better, take more vitamins and drink more water.
So I tried harder and I worked harder. By this time I was living and working steadily in the San Francisco Bay Area for ANG Newspapers, a large conglomerate in the East Bay. I didn’t look sick and I tried my best not to act sick. It was a competitive job. I was well liked and well accomplished, but there were plenty of younger photographers that would gladly take my place.
Finally, my body sent up a distress flare. I went into anaphylactic shock in my allergist office. That’s the kind of rare condition where your throat swells up and you can’t breath until they save you with epinephrine. Well, it happened to me twice and after the second time, my allergist suspected something was a bit wrong with me.
It was just a simple blood test showing that my body was creating antibodies against me. I was 31 the day my allergist looked so grave when she told me that I had an autoimmune disease that I couldn’t pronounce. It was Sjogren’s. But that day, I just had to get back to work. I probably had a photo assignment later that day.
So that’s how I dealt with it at first. I ignored it. For the next year and half I worked myself into the ground. I shot everything I could with a wide angle lens because they were lighter. I could hardly walk and holding a camera up to my head was excruciating. I was put on a lot of drugs including prednisone. I was a mess.
I knew what had to happen but I just couldn’t do it. I had to stop shooting. I had to put my cameras down. I was slogging through quicksand and I was sinking. But how do I stop? How do I give up being a photographer? That would mean giving up being me. It was all that I was. My whole self worth, my identity was being a photojournalist. How could I choose to stop? What would be come of ME?
Well, I’m 39 now and a lot has become of me! I won’t lie, it was the worst thing ever losing my career, my identity to Sjogren’s. But I will tell you a little secret that I don’t often share...I am actually “healthier” today then I was when I was diagnosed with Sjogren’s. I mean, I am healthier in my lifestyle, my choices and my relationship with my friends and my family. And in my relationship with myself.
The last eight years have been an journey of a lifetime. Oh sure it was really hard in the beginning and it’s still really hard everyday. But I have survived being diagnosed with Sjogren’s and have learned how to live and thrive with it. Yes, I can no longer work as a photojournalist, but I have found other uses for my creative visual skills. And I have found so many other ways to measure my self worth including pouring my creativity, passion and energy into helping to raise awareness and raise funds for a cure for Sjogren’s.
It’s now 2011, and the second year of Team Sjogren’s Wharf to Wharf in which I have asked a whole bunch of local friends, none which had ever heard of Sjogren’s before, to run or walk 6 miles for me and fundraise for the Sjogren’s Foundation.
As for my identity now, I know that I am a loving wife to an even more loving husband. I am now a mother of a three year-old son and I’m surrounded by amazing mommy friends in our close knit community of Boulder Creek, CA and I am feeling on top of the world! _______________________________________________________________
Please donate generously in my honor
and help fund research to find a cure for Sjogren's.
Thank you for your support!