Trang’s Story

Once again, I am in awe of the bravery of our lady-crew. I’ve only met Trang once, at our last meeting, but I knew she was really special. Here is her story. She’s opened her heart to us. Here’s to you, Trang!

I usually try never to make New Year’s resolution, because I hate broken promises.  I rather look back in the year and remember events and people that touch and impacted my life.  First, I would like to start with a confession.  Some of you will know already and some might hear this for the first time. It is not something I wanted to share and not something that I wanted to define who I am.

Four years ago..will be five years in April of this year, after a visit to a doctor’s office for what I thought might have been skin issues on my face turned out I was diagnosed as having Lupus. For all my “House” friends, you all know what that disease is all about. For everyone else, Lupus is an autoimmune disease. To summary it best, my antibodies that are suppose to protect me from illness like the common cold are confuse and don’t know which germs wears the black or white hats. In another word, my body starts attacking itself.  At first stage of being diagnosed, I had several emotions, fear, depression, and anger being the strongest. I just had Kali who was barely 4 months and Corby and are were only married for close to 2 years.

I like all nut job started to google Lupus like crazy to understand and learn more about this disease. Thanks to the world of Google, I learned that there was no cure for lupus and that the life expectancy was about 10 years.  I join a lupus community board so I can meet others who were going thru the same thing. I was a sponge trying to absorb as much as I could about the disease..can’t fight something if u are not prepare for what’s to come was my view point.

That same year, I met a mutual friend of many of you. A young mom, named April Kulunk, who changed my view on living with my disease.  I didn’t realized it at first. I knew I liked her when we met at the park at her first meetup. I instantly fell into her boy, Ben’s, baby blue eyes. She was a new mom and new to being a stay at home position, like me.  I learned about April’s cancer diagnosis at our moms’ cookie exchange party that December. Her story life was so similar to mine that I felt so connected. I felt like she and I could relate since we had so many similarities.  We were both married for but a few years with our first child, and now at our “prime” face with a disease no one saw coming.

Over the next year or so, I learned from April to not let the disease define who I am or want to be. I stopped feeling sorry for myself and stop trying to be “normal” aka denial stage.  If April could go thru chemo  and radiation to fight her disease so she can prolong her life for John and Ben, the least I could do was try to fight mine for my family.  The next two years, my body went thru more emotional and physical challenges. I discover many of the things I enjoyed in life, I could not enjoy anymore. The sunshine at the parks or beach was now my enemy.  I went thru stages of weight loss and depression. I learned early that depression and lupus come as a combo disease..2 for the price of one.

With many of you, I shared about my fight with the disease, my clinical trials, and meds that was prescribe to help me keep my lupus in check. I stop the trials earlier in October 2013.  Obligations to my girls were more important to me then finishing the trial for another 4 years.  I am on other meds to help with the flares and pain associated with Lupus.  Like some of you, I was touched by April’s life and her passing this December. I  didn’t attend April’s Celebration of Life. It was not in me to witness that, and I would hope April would have understood.  I never felt more alive this December. I felt that I had to do more, be better for April, for Corby, but most of all for Kali and Layla. To my girls, I am perfect, and I hope to continue that image for as long as God lets me be.

Sorry, didn’t plan on making my explanation so long or make it sound like my obituary.  What I wanted to come out of 2013 was to tell my friends and family “I am sorry if I cause u any hurt this year.” You know who you are, no need to name names. It is not to make excuses, I owe my actions, but rather maybe to get you to understand. I am my astrological sign, Cancer more often then I would like–with a hard shell and snappers on the outside but very mushy inside. You just don’t get to see the mushy so much.  I cherish each of my friends and family, and while it is hard for me to verbally tell you sometimes, you know I do hopefully. I am still working on that personality flaw after 38 years.

So 2014, I want to continue learning, loving, and living! I want to apologize in advance if I am more annoying, louder, or excited about life more than normal.  It is because I learned from April and borrowing the words from one of my favorite country artist, Tim McGraw to “living like u we’re dying!”



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