World Lupus Day

May 10, 2011

The Lupus in My Life:

Lupus has been a part of my life for as long as I can remember.  I didn't know the specifics of the disease until later in life, but I remember as a child that my mom was careful to stay out of the sun and that she took medicine every day.  Even so, she never let Lupus interfere with being a mom.  She always put her family first and made sure we were taken care of and loved.  For the most part, she balanced life and Lupus beautifully.

My Mom's Story:  Mama was diagnosed with Lupus at an early age.  I can't imagine how her and her family took this news initially.  During that time, little was known about Lupus, and having such a diagnosis was often associated with a very, very hard battle with it.  I'm not sure what her life as a teenager was like with Lupus.  I believe she developed pneumonia several times, and had to spend some time out of school and in the hospital because of it.  I remember my father saying that she wore white gloves on one of their first dates because she had a Lupus rash on her hands.  Like always, it seems that Lupus was not something she let interfere with her life. 

It wasn't until I reached high school that I remember her really having problems with it.  She got sick and had to have chemo treatments.  The cause of it was Lupus Nephritis:  a form of Lupus that affects the kidneys.  I didn't realize it at the time, but I know it must have been a very scary period of time for her.  Her doctor and her were forced to make a serious decision on how to stop her Lupus from essentially attacking her kidneys, and, at the time, chemo was the answer.   Unfortunately, we later found out that the same chemo used to prevent Lupus from attacking her kidneys, most likely caused the pre-leukemia she was diagnosed with nearly seven years later.

My story:  During the second semester of my freshmen year, I developed vasculitis.  Three months and several doctors later, a rheumatologist gave me a diagnosis: Lupus. It was scary. The only Lupus I knew was that which my mom had, and, at the time, I didn't understand that every person's Lupus was different.  Thankfully, I had a wonderful rheumatologist, and the non-steroidal, anti-inflammatory drugs (NSAIDs) that he prescribed to treat my illness were very effective in keeping my illness in check.  Since then, I've gone through the emotional and physical struggles of coping.  I saw a counselor for a while, I attended some stress-management classes, and, over time, I learned that there are certain things I must avoid that will cause me feel pain and fatigue.

I know now that in no way is my Lupus like my mother's- mine is much less invasive and much less severe.  At the same time, I am aware that there are many other men and women who have a type of Lupus very much like my mother's.  For that reason, I know how important it is to spread Lupus awareness and encourage continued research.

Lucy: The Beetles' "Lucy in the Sky with Diamonds" was inspired by a drawing Julian Lennon made as a young child of a girl named Lucy.  Lucy passed away from complications with Lupus in 2009.  Julian Lennon and James Cook paired up to write this song, inspired by both Lucy and James' grandmother, who also suffered from Lupus:

Proceeds from the EP will be donated to both the Lupus Foundation of America and the St. Thomas Lupus Trust in Great Britain. 


**Today is the final day to enter the doggie bandana giveaway (here)!!!  I'm donating $1 for each comment to the Lupus Foundation of America.


Try Anything Once Terri said...

Thanks so much for sharing your family history regarding Lupus and for raising awareness about it. I actually first heard of Lupus through subway advertisements (weird, right?), so I have been familiar with some of the basics of it for some time. Either way, it's always good to educated even further. Thanks again!

Sugar said...

Thanks for sharing your story and bringing awareness to Lupus. I didn't know much about it.

kelsey said...

Liz, I'm so sorry that you and your family have suffered from this illness. Thanks for doing all that you are to raise awareness about it. I think a lot of people will benefit from it.

Jenna said...

I thnk my sisternwasmdiagnised with Lupus today (the whole thing has been very confusing and I'm not really sure what is going on still). I may be emaiing you for advice on how I can do a better job supporting her.