Providing Answers, Support and Hope in Georgia

Thirty-One Faces of Hope: Vi-Vi Nguyen

The lupus community includes people living with lupus, friends, family and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions. 

Vi-Vi Nguyen, LFA, Georgia Chapter Board Chair

Lupus is a mysterious disease and is as diverse as the people you meet every day, just like snowflakes as Dr. Goldman describes it. Lupus has changed so many lives and looking at these warriors you would never know. One day they are as bright as sunshine and the next day they look like zombies or pin cushions with hospital tubes everywhere.  Regardless how they look or feel, each person gives hope to families and patients due to their sheer perseverance to survive. 

For Lupus Awareness month this May, the LFA Georgia Chapter is featuring 31 Faces of Hope and I have the honor of being included in this group of wonderful people. Every time I think I am normal person, Lupus likes to remind me it is still there. Most of my symptoms were resolved with a kidney transplant, but I still have joint pain, brain fog, and a zombie like appearance in other words extreme fatigue.  Dealing with fatigue and brain fog is extremely frustrating for a workaholic, but it does not compare to what other patients must deal with. Hearing their stories humbles me every time. 

I am often quiet and shy person when you first meet me.  To a point where, my coworker calls me a vampire, because my quiet presence scares people when I visit their desks.  Unknown to them, I often feel like a vampire trying to avoid the hot Georgia sun as my energy is vaporized and my skin becomes red.

Lupus has brought me out of my shell.  I had to let down my walls and talk about my experiences and frustrations to keep my sanity.  During my worst period, I would cry randomly and often at my desk as I struggle to get my work done.  Thankfully everyone around me was so understanding and my company has supported the cause for many years.

This year, I feel my journey has come full circle as I returned to Washington DC as an advocate on Capitol Hill.  The last time I was there was the last time I felt like any regular human being full of life. Shortly after visiting for the cherry blossom festival, a dream of mine, I was hospitalized with unbearable pain that even morphine could not subdue it.  Unlike other patients, I was diagnosed with lupus nephritis within days. I was completely lost back then. 

I first became a volunteer to keep busy and distract myself in attempts avoid my depression and sad thoughts.  Most of my friends and family did not understand my struggle and it is not an easy one to explain. As I continued to help, I no longer felt alone.  Without the Lupus Foundation and the people, I have met over the years, I would not be here today. 

I shall not bore you with the lists of procedures and countless issues I have faced, but I rather provide a little hope to everyone.  I know you don’t want to hear it especially if you are having a bad day, but the key to surviving life and lupus is a strong spirit. When it wavers, which it often does, immersing yourself with knowledge and great people will help you navigate the murky and turbulent waters. 

Find happiness in the little things in life like getting flowers or finally washing the dishes.  I often think about the first time I went to the movies late at night after my transplant. Before then, I always had to be home early so I could complete my dialysis on time to get up for work.  I will never forget. Windows down, cool fall breeze through my hair, and my hand out of the window. Life can get so complicated sometimes that the simple things in life can bring us back to life.

I hope as you read each story from the Faces of Hope that you find strength and hope.   Their journeys have not been easy, but they are unique and beautiful. They are not defined by their disease, but their character.  Join myself and others in the fight for better medications, treatments and research leading to a cure for lupus. 

Vi-Vi Nguyen