The Beginning of Our Lupus Journey

 

Hello and thanks for stopping by the blog. My name is Beth and my daughter is Olivia.  I would like to begin by bringing you up to speed on our life with Lupus.  I will try to be as compact as possible but still give you the basics in case you are experiencing some similar challenge in your life today.  We were cruising along life’s highway when, at the beginning of last summer, Olivia began to feel sick and exhausted.  After collapsing after school the week before summer vacation, we rushed her to the Hasbro Children’s Hospital  ER where doctors conducted a multitude of tests and discovered she has SLE Lupus and Lupus nephritis. (Hasbro ROCKS, by the way!) We stayed for five days and she had a kidney biopsy to see which class of lupus nephritis afflicts her.

Systemic lupus erythematosus is a chronic autoimmune disease for which there is no cure.  The disease can attack vital organs at any time without warning.  Lupus nephritis happens when lupus causes inflammation in the kidneys, making them unable to work properly to filter waste. You can read more about lupus and lupus nephritis –I know not many people really understand what exactly this beast is and how it destroys the body.

We were discharged from the hospital after five days with prescriptions for some pretty heavy duty medications such as prednisone, plaquenil, Cellcept, Lisinopril, simvistatin, Prilosec, and others.  I would love to insert a hyperlink here so you would be able to click each medication and see what a double edge sword each one brings to the table but I am new here and haven’t figured out how to do it yet 🙂

For the next month, my entire family began the enormous task of figuring out how to live with this new condition that really affects all of us.  Of course, it was a beautiful, sun filled summer, but when you have Lupus you CANNOT be in the sun.

http://www.healthline.com › Lupus

 We tried to muddle through the best we could–even bought one of those huge beach umbrellas and a REALLY wide brimmed hat!  But, Olivia was not getting better.  In fact, she was worse. We could not have fathomed exactly how much worse at the time, though.  Please come back soon to read about the most awful part of our journey to date.  I will continue my story very soon.

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Olivia the day before she collapsed from Lupus

 

http://www.lupus.org

http://www.lupusreasearch.org

http://www.hasbrochildrenshospital.org

 

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