Sharon - Living with Lupus

Thursday, July 30, 2009

I'm Getting Excited!!!

The Walk is less than two months away and I am excited. I don't usually get overjoyed with walks (i.e. physical exercise) but because this walk benefits all of us dealing with lupus, I am amped.

The Alliance for Lupus Research often sends out periodic bulletins with various updates. The most recent periodical asked readers to respond to "Why I will walk for the ALR in September" and once again Cherish was all over it while I was still trying to figure out how not to swallow the pits in my Rainer cherries. Here's her published submission...

Dwight (the Regional Fundraiser Chairperson),

My best friend Sharon Harris (affectionately referred to as "Cakesy") was diagnosed with lupus at the height of what should have been our "fun years". We were preparing for our final year of college and looking forward to all the goals and dreams we'd planned since we first became friends at the age of 5.

Here we are 25 years after we met, and those dreams and goals have changed but for a number of reasons, but we are determined to not let Lupus be a significant one going forward! As I have watched Sharon battle her flare-ups over the years, sometimes openly, other times in secret, I used to deal with it by simply praying she'd be OK and acting (much like she did) as if nothing was wrong when she was around. Well now, its effect on her life has been a huge reality for all of us close to her, and we recognize that the only way to jump the hurdle is to face it dead on. She has more than enough strength to do it herself, but we'd never leave her alone to fight this battle.

When our other friend April suggested we participate in the walk, we did what the three of us normally do when put our minds together - we tried to do it as BIG as we can! We started our blog to raise awareness about Lupus and provide information to our friends and family, while also using it as a way to encourage people to join us or donate. Its been a huge hit among our friends, families and even strangers!

We are all very excited about the upcoming walk. And to answer your question, the reason I am walking is so my best friend... the Oprah to my Gail... the sister I never had... will be reminded, yet again, that she'll never be alone in this fight.

I'm looking forward to September!

Cherish Samuels

If I didn't know better I would've thought this girl wanted a kidney.

See you all September 19, 2009.

Tuesday, July 14, 2009

Keds Wear Purple for Lupus Shoe

It’s your resident fashionista here with a great way to look good and support a worthy cause!

The Keds Wear Purple for Lupus Awareness shoe design is described as:

A fun design for the lady who loves daisies. Purple for the cure. Lupus awareness, by way of purple.

To learn about the illness of Lupus : 50 percent of proceeds will go this cause.

This cool shoe is offered on for $60. You also have the option of customizing the design even further on the site… you can change the color of the laces, the shoe lining or many other features, should you desire to do so! Click here to check them out and let us know if you buy a pair!

keds lupus shoe

*As mentioned in my previous post, Zazzle also has a large collection of lupus t-shirts and other products so feel free to look around the site!

Tuesday, July 7, 2009

Orange and Purple

Lupus is a lucky disease being that it is represented by two colors, orange and purple. I love the orange because it is one half of my alma mater's colors. I like purple because it is the color of royalty. Lucky for me that I have gel bracelets in both colors and I sport the one that represents the mood that I am feeling on that particular day.

The Lupus Alliance local chapter that I work for and the national office use the orange bracelets. They read 'Life Without Lupus'. All of the money collected goes towards research.

The Lupus Foundation of America use purple ones that read 'Someone You Know Has Lupus'. All money raised from these bracelets going towards lupus education and awareness. Former Los Angeles Lakers Vlade Divac and Caron Butler would wear the gel bracelets. Could it have been because their team colors were purple and gold?? Whatever their reason, vanity or otherwise, I am just glad they had the bracelets dangling from their wrists.

So anytime you see purple or orange, pray for me and the other 16,000 new folks who will contract it this year. Our lives depend on it.

Wednesday, July 1, 2009

Butterflies and Wolves

Folks often ask me what the "lupus symbols" of butterflies and wolves symbolize. When you see a butterfly as it relates to lupus it refers to the lupus mask. I've been a victim of the mask. In October of last year, when I started to flare, meaning my lupus was coming out of remission, I got a spot below the right corner of my right eye. The spot wasn't very large, about the size of a dime. The spot was the color of the inside of your hand. Others didn't notice but I knew it was there because it was my face. Being that I am dark-skinned, I felt it was more noticeable because the spot was so light. Depending on what event I was attending, I would cover the spot with make-up. No worries until the spot began to grow and spread.

During Thanksgiving, my mother came to visit me during in Florida. Out of my peripheral vision, I caught her looking at me. She wasn't eyeing me because her baby girl had done anything special but because she was trying to figure out what was going on with her face. Needless to say that holiday was a very solemn one, haha! I remember one time I was driving and felt her eyes on me. Without facing her, I just said "I'm going to be okay mom". In my spirit, I knew that I was going to eventually be okay eventually but in my mind, I knew that lupus was about to take me on an unforgettable ride.

The butterfly rash grew and grew...and grew. My cheeks and nose were the color of the inside of my hand hence forming the butterfly rash. My cheeks were the butterfly's "wings" and my little nose was the butterfly's "body". Creative, eh? Now the butterfly rash is also sometimes referred to as a malar rash. Pop singer Seal has the malar rash on his face. At one time it was reported the rash was a tribal marking. Lupus rashes and tribal markings are two different things and I am glad that discrepancy has been resolved.

Lupus is sometimes depicted with the picture of a wolf. In Latin, "lupus" is translated as wolf. It has been said that the butterfly rash markings on a lupus patient's face closely resemble markings on a wolf's face. I've also read that "wolf" is used because it "devours" the affected part. That I can attest to but I also know there is a stronger force that is working on my behalf as I continue to deal with the remnants of my lupus mask. It has cleared up tremendously but there are still spots here and there.

Always a believer in documenting my growth and evolution, as the spots spread on my face so did my fascination with taking pictures of the affected areas. One of my friends wrinkled her nose and asked me why I would do such a thing such as take pictures of my diseased face. "To help somebody, dear. To help somebody. I'm far from ashamed."

Little did I know that my hasty camera phone pictures would become a masterpiece when they reached Cherish's heart and hands. My girl is the best. I may have started the Lupus education class but she continues it. It's been a month since it's been posted but still a month later, I still watch it and cry...tears of joy of from where He and your love has brought me Until...