Purple Pinches

Instagram Message: "How's this for wearing purple today Auntie Barb?" Even 4 year old Colton knows - Lupus sucks.  Wear your purple today to support World Lupus Day. 

Instagram Message: "How's this for wearing purple today Auntie Barb?" Even 4 year old Colton knows - Lupus sucks.  Wear your purple today to support World Lupus Day. 

In my neck of the woods, the color purple has been very popular lately because many of us are still mourning the death of Prince.  In fact, Minnesota is trying to have purple passed as the official state color.  Hmmm, I’m thinking the Vikings are not objecting to that color at all.  In addition to the Minnesota purple connection, I just recently learned that purple is the official color for Lupus.  Tuesday, May 10th is World Lupus Day and wearing purple means that you support those effected by Lupus. 

Leaving behind her husband Joe Christy and her son Jared, who was only 2 weeks from turning 18 years old, Pia passed away on April 5, 2016.

Leaving behind her husband Joe Christy and her son Jared, who was only 2 weeks from turning 18 years old, Pia passed away on April 5, 2016.

When I tell people that my cousin Pia died from Lupus I get two different reactions: A) “What is Lupus?” or B) people share that their relative has/had Lupus so they know about it.  If you are someone who wants to know what the heck is Lupus, let me tell you - the more I research and read about it, the less I really know.   It’s the “question mark” of diseases because no one can tell you how someone gets it (it’s not contagious) or what we can do to prevent getting it (it’s not like or related to cancer).  I read about the demographics and found out that women who are Asian, Hispanic or African American are more likely to have Lupus.  Well, both of those theories should be taken with a grain of salt because my dad and his twin brother had Lupus and I am finding out that the people who shared with me that their relative has/had it are all Caucasian.  See what I mean? Question mark (?) of diseases. 

Uncle Johnny and Frank (my Dad) diagnosed with Lupus in their late 40's. 

Uncle Johnny and Frank (my Dad) diagnosed with Lupus in their late 40's. 

Even though it's not sexy, the best definition I found is from the Lupus Foundation of America educational brochure:  “Lupus is a chronic, autoimmune disease that can damage any part of the body. Normally the immune system produces proteins called antibodies that protect the body from foreign invaders, such as bacteria and viruses. With Lupus, the immune system cannot tell the difference between these foreign invaders and the body’s healthy tissue and creates autoantibodies that attack and destroy healthy tissue…Lupus is a disease of flares…and remissions. Lupus can range from mild to life-threatening…With good care, most people with Lupus can lead a full life.” 

The brochure is filled with more information but I thought I would just outline the symptoms that the Lupus Foundation of America lists: “extreme fatigue, headaches, painful or swollen joints, anemia, fever, swelling in feet, legs, hands, and/or around the eyes, pain in chest on deep breathing, butterfly-shaped rash across cheeks and nose, sun or light sensitivity, hair loss, blood-clotting problems, fingers turning white and/or blue when cold and ulcers in the mouth or nose.”  All of the symptoms except the butterfly-shaped rash seem common- who would think of Lupus?

When my cousin Pia suffered a stroke on Super Bowl Sunday 2016, her sister, Patricia (nicknamed Pachie), started to help bring a Lupus walk to Orange County.  Pachie had experience with the Susan G Komen Breast Cancer Awareness campaign so she thought she would see if there was anything she could do for Lupus.  I know that nothing is a coincidence - this is her calling.  Pachie has taken her "baton" and is running with it.  She has taken to social media to educate us on the disease and has put so much effort into spreading the word. So far I’ve learned the new hand signal, that purple is the color to wear on World Lupus Day (actually wearing purple for the whole month of May would be acceptable) and that people who are living with the disease are called Warriors.  Pachie has a big role in the 2016 Walk to End Lupus Now in Irvine on June 4, 2016 so my daughter and I going to walk to support her and honor Pia. I want to give our thoughtful pinches of support for many other Warriors that are fighting each day. It's believed to be 1.5 million in the US according to Lupus Foundation of America.  I AM GOING TO WEAR PURPLE ON MAY 10TH IN HONOR OF WORLD LUPUS DAY. Won’t you join me?

The new hand signal that represents Lupus.

The new hand signal that represents Lupus.

I just ordered these  pinches  for my mom, my sister-in-law Heather, my cousins Jay-Jay, Cherry Pie and Pauline and my daughter. Click  here  for more info on the bracelets and the 2016 Walk To End Lupus Now. 

I just ordered these pinches for my mom, my sister-in-law Heather, my cousins Jay-Jay, Cherry Pie and Pauline and my daughter. Click here for more info on the bracelets and the 2016 Walk To End Lupus Now. 

I will continue wearing this purple rubber bracelet that I’ve had on since April 12th (and haven’t taken it off) until my new one arrives. 

I will continue wearing this purple rubber bracelet that I’ve had on since April 12th (and haven’t taken it off) until my new one arrives. 

Pinches,

Barb

 

 

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May the Fourth