My Lupus Story To Share With You

To read about my lupus story stay on this page

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How did it happen?

Hi, Just in case this is your first time visiting this site, my name is Ratcha and I have Lupus. I am glad to be able to share my Lupus experiences with you.  I have been living with this condition for over 20 years.  Living with joint pains and fatigue are parts of me.  It would be so not me if I don't wake up with achy and pain.  I would be blessed if this doesn't happen! It would be a miracle!

Long time ago, way back when I was in Thailand, I took a crowded city bus to school.  The weather was very hot and humid as usual.  I might have been in the sun and heat too long that I fainted right on the bus where I had to stand and hold on to the rail.  I kneed down on the bus's floor and tried to gain my strength back.  Fortunately, I recovered quick and went right straight to the classroom.  When I looked back to this incident, I thought to myself, hmm, this might have been my earlier Lupus sign.  I was always weak and fatigue in the sun which I didn't know why.  

When I moved to the United States in 1990, I started to noticed gradually that I had lost a lot of weight.  My knees would swell, feel tender, puffy and very painful during Summer and my fingers would get so cold and turned blue in Winter.  Quite often, I ran warm water over my hands just to make them feel good.  Then in the Summer of 1991, my husband and I went back to Thailand to visit my family.  We spent some time on a beach and a lot of time outdoor in the sun light.  I started to feel strange and very tired. On the flight back to Maryland, I got sick on an airplane and I couldn't remember much of anything after that. We stopped in Seattle to check me in one of the hospitals.  Doctors thought that I had Lupus.  I didn't remember how I was treated.  When we got to Maryland, I was admitted to a hospital right away and I was diagnosed with Systemic Lupus Erythematosus (SLE) with a doubt of central nervous system involvement. Later, I was transferred to John Hopkins Hospital and stayed there for a few months.

I had to face many challenges during college years.  I would wear clothes that covered my arms and legs.  I had to wear hat and sunscreen every time I left home.  People would look at me when I took my pills after lunch in the cafeteria but I didn't care.  They probably wondered what I was popping or what was wrong with me.  Luckily, a lot of my friends and my teachers were aware of my Lupus conditions and they were very understanding and supportive.

When I was diagnosed with Lupus in 1992, I was a junior student at Baltimore City Community College.  I was not quite sure what major I want to studied or what I want to be.  When I got sicked and hospitalized for 2 months, it was cleared to me that I wanted to be a nurse.  After a long recovery from a coma that Lupus gave me, I volunteered in a hospital nears home and finished up my community college.   In 1994, I enrolled in nursing program at University Of Maryland at Baltimore.  Then in 1996, I graduated with my BS in Nursing. I have worked in nursing home and hospital in Maryland for 10 years until I was pregnant.

Sharing my story with people like you is one way to help me cope with my conditions.  I hope my story will at least help or inspire people who live with Lupus as well their family members.  There is always hope and don't ever give up dreaming big!  You have the power to change things. Your positive thinking will empower you to fight and win a battle. 
I'm very fortunate that my Lupus is now in remission and I just got a good news from my doctor that my anti-dna level is in good range.  I used to take a high dose of prednisone and now I'm down to zero. For many years, I thought I'd never have a child of my own.  With many helps from doctors and many intra uteral and in vitro fertilization processes later, I am now a mother of two lovely twin girls.  

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