TEAM CAKESY is BACK!!!!

Its almost that time folks! September is right around the corner and you know what that means.... Lupus walk time!!

We have had sooo many changes in our lives since the last post in October 2009. Sharon and Cherish have both updated our personal blogs but the Team Cakesy blog kinda got left behind... Here are a couple of quick updates you REALLY don't want to miss:

Sharon was featured on a PBS special that documented her life with Lupus. The special included interviews with her and her family and friends, along with tons of pics of her over the years. I managed to have a few photo cameos but sadly enough could not make it back to town in time to appear with her. I am soooo proud of her and Thankful that PBS is getting the word out! You can watch the full video HERE

 

As if that weren't enough, AOL's Blackvoices published an article this week about the daughter of rapper Snoop Dogg, who is also battling lupus. Such a sad story because she is so young... and what a spark for us when we opened the online article and see a link to Sharon's PBS video!! How amazing is that in terms of exposure???

Sharon is now working for the Lupus Alliance of America's Michigan Indiana Affiliate. She, along with the rest of the organization, are doing GREAT things! The word is getting out which means (hopefully) the research, funding and awareness are all growing even faster! Stay tuned for more great news and feel free to come out and show your support or donate to Team Cakesy:

16th Annual Walk For Lupus - Metro Detroit

Saturday, September 25, 2010

Metro Beach Metropark (31300 Metro Parkway - Harrison Township, MI 48045)

Registration begins at 10 am.

Walk begins at 11 am.

Lunch begins at 12:30 am.

Silent Auction closes at 1 pm.

Simply Beautiful

I love my job. Ask anybody.

I know that I am so fortunate that at 30 years old, I have a career and not a just a job. I may not wander into the office at 10:30 some mornings but hey, when I finally arrive, I get things done.

Within the past two days, my office made something hugely miraculous happen for one of our members. Now, I want to be clear, I had no part in this. I was at the spa. Yes, if lupus hasn't taught me anything it has taught me to take time for s-e-l-f. So my boss and colleague traveled to Indiana and presented the member and her parents with a trip to Sea World. It was always a dream of hers to swim with dolphins and the office made it happen. It's a beautiful thing to look forward to after doctor's have told her that there is nothing left that they can do for her. It's the least that we could do after doctors had informed her that although she has lupus, cancer has spread to 93% of her lymph nodes. It's a beautiful thing to be able to do something for someone that just allows them to throw up their hands with glee. It truly is beautiful.

Common people doing uncommon things...for others. Try it sometime.

Planning Time

Well we have reached $4,500 and counting. There is no recession in God's eyes as it applies to garnering help for people who are unable to speak and fight for themselves. Letting people suffer and die needlessly, the powers that be need to be ashamed.

This blog was designed to introduce and track the progress of TEAM Cakesy, so I thought. Little did I know it would become more than a site with a funny name. I was surprised to learn that the site was the first introduction that some had to lupus. I was thinking that I probably scared those poor folks to death. Ha! But hey, what else could I do but give it to people straight? Lupus is something that I deal with every minute of the day so I guess I would be the perfect candidate to write about it. A very small percentage, like 2% or less, are diagnosed with both discoid and systemic lupus, simultaneously. Leave it to me to have both. I always knew that I was special.

So now the plan is to start planning for next year's Lupus Walk. It is going to be on Saturday, September 25, 2010 at Metro Beach in Harrison Township, Michigan. This is the Lupus Alliance of America's Michigan Indiana Affiliate's walk and not the ALR walk. I actually work as a Public Relations Specialist for the Lupus Alliance but had committed to the ALR walk before I was offered a job. Of course, I would have loved for all of TEAM Cakesy's pledges to go to my organization but I was too far along in organizing for the ALR's walk to jump ship. It's all good though. Can't cry over spilled milk as my Aunt Joyce likes to say. Upward and onward, soldiers!

A New Development

Well we lupus folks have a small victory and it comes in the form of Benlysta. It is the first new medication, designed exclusively for lupus patients, in half a century. There are no medications that are strictly for lupus. Our meds are always borrowed from other diseases like cancer or malaria. Now do you see why in an earlier post I termed lupus the 'step-child' of all diseases? We haven't had a breakthrough since Dwight Eisenhower was in office.

Benlysta helps with both discoid, which is lupus of the skin, and systemic, which is lupus of the blood, lupus. I have both. The drug is said to diminish the disease's symptoms and is a lot safer than Prednisone. Prednisone is a steroid that is used for pain and symptom management. It has a wide array of side effects such as brittle bone syndrome, weight gain and is very toxic to the body.

A lot of people, myself included, are very encouraged yet guarded by this development. With lupus being so hard to diagnose and symptoms varying from one person to the next, the newest "promising development" has failed time after time.

Benlysta is expected to be approved by the Food and Drug Administration next year. Please keep us in your prayers on this one. No one deserves to have to function in constant pain. Blessings to you!

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!

Sincerely,
Cherish Samuels

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

See you all September 19, 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 : www.lupus.org 50 percent of proceeds will go this cause.

This cool shoe is offered on Zazzle.com 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!

*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!

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 http://www.youtube.com/watch?v=md13vn7cCHc Until...

Lupus the Step-Child

The camapign for lupus education rolls along. It's amazing how many folks are still unaware of the disease. Lupus is more common that MS, Cystic Fibrosis, Cerebral Palsy and Sickle Cell anemia combined. It seems as though everyone has heard of these diseases but poor lupus is the step-child. Sadly, I understand why. Lupus is a hard disease to diagnose. The symptoms mimic those of other diseases. There is no clear cut symptom when it comes to lupus. It is a frustrating and expensive task to get an accurate diagnosis. That's why I have to do something to change it. It took doctors two years to accurately diagnose me. I was told I had irritable bowel syndrome, Chron's disease and that I had a case of crazy (i.e. a hypochondriac).

The first time that I heard of lupus was on the "Martin" sitcom when someone made a joke about Santa Claus having lupus because he had spotty hair. The joke tickled me then and I can definitely relate now to Santa's spotty hair. However, I'm very fortunate because my hair has grown back so quickly that I hadn't even noticed how full my hair has gotten. I guess I have had so many other things going on to notice. Team Jesus: 1000 Team Lupus: 0

Our pledges have reached a whopping $965.00. We are almost halfway to our goal of $2,000. I think that we are on track to reaching our goal figuring the walk isn't until September. I'm more than excited about the walk. I am eternally indebted to April and Cherish for getting the ball rolling and for all that are pledging, walking and praying for us. Daily, I amazed at the outpour of support from folks that I don't even know. It feels really good to know that we can make a difference in our little corner of the world. I'm so thankful. Below, I've uploaded one of my favorite songs by Mary Mary called, ironically, 'Thankful'. It speaks from my heart what I want to convey to each of you. Until...

The Newest PR Associate

Yipee! TEAM Cakesy is forging ahead and making a difference. As of today, we have almost $900 in pledges with our goal being two grand. I have faith that we will surpass that goal and garner even more pledges. It's still early in the game as the walk isn't until September but we do appreciate everyone who has pledged thus far. May you be blessed.

Lupus and I have been getting along fairly well as of late. Here it is 7 years into the game and I still don't know what I can do and what I can't. Lupus is terribly unpredictable. Some days I can wiggle my right thumb and other days it's as stiff as cardboard. Oh well, woe is me. As long as my third finger on each hand works, It's all good. ;)

Oh yeah. Great news alert!!! You are reading the blog of the newest Public Relations Associate (the only PR associate, mind you) of the Lupus Alliance of America's Michigan/Indiana chapter. Heyyy! Hoooo! I am so excited. I went in for a volunteer opportunity and came out with a part-time gig. I always wished to do public relations for an organization that supports lupus research and by golly, from my lips to God's ears. He made my dream a reality. I am absolutely thrilled. I knew God was going to get His glory in my struggle.

However, during your struggle, be a class act in all things because you may be the only glimpse of God and goodness that a person may ever encounter. Be sweet and be kind. Until...

Lupus Fashion

As the designated fashonista of my crew, I'm always on the look out for cool clothing and accessories that represents my friends passions, personalities and interests. Today I decided to see if I could find some cute “lupus fashions” online. Check out these nice shirts! (you can click the image to purchase the shirt or see other designs)

For those who are into jewelry and have a little extra dough to spend, check out this beautiful amethyst and diamond butterfly pendant I saw advertised on lupus.org. For each purchase, $60 will be donated to the Lupus Foundation of America – Illinois Chapter.

I would buy Sharon that pendant but I’ve never seen her wear silver. (That sounded like a better excuse than “I’m broke”). I would consider buying her the “Warning” t-shirt… but she might abuse her privileges and wear it on good days just so people won’t bother her and will treat her like a princess.

Laying the Foundation-One Brick at a Time

Well, the slave driver, oops, I mean Cherish woke me up this morning with exciting news. The Alliance for Lupus Research has named this blog as the blog to watch! Great news on such a dreary Monday morning. The slave driver, dang, I mean Cherish, then said it's time to add another blog entry. So being the lowly patient with no energy to fight back, I dusted off the laptop and here I am.

I am so pleased because since the inception of all things Lupus last week via the web, everything has been flowing smoothly. This blog has been recieved well and the Sharon's Face Vs. Lupus video is nothing short of amazing. When I viewed the video for the first time, I cried and cried. I had cried so much that I ended up being awake for 24 hours. Just up doing nothing in particular. I guess I was just so amazed that someone would take the time to put together so meaningful for little old me. ;)

On the other hand, fundraising is going wonderfully. TEAM Cakesy has amassed $600 in pledges for lupus research. Yeah! Take that lupus! And, like Puff Daddy, we won't stop. It seems like everyday I am connecting with someone else with lupus. I love it. We have to uphold and encourage one another. We know each others struggle and we know each other's pain. And that's why like Puff Daddy, we CAN'T stop. Until...

First Post, Here Goes...

Well, this is officially my first post for the TEAM Caksey blog that Cherish has so graciously put together for the Lupus Walk in September. While she is the technical brawn behind the operation, April is the muscle brawn. April said that she is going to "Run Forest Run" and come in first place in the walk. As for me, all I did was get diagnosed with Lupus and so I haven't quite figured what kind of brawn that is.

The wheels started spinning when April decided months ago that she was going to participate in the walk in honor of me. I thank God that she is walking in honor of me instead of in memory of me.

Not only am I thankful for these two but also for all of you that are reading this. Life always seems to throw unexpected twists and turns our way. I had no intention of being diagnosed with a chronic illness-trust me that was never on my radar-but since it has happened, I have decided that despite the rain, I will see rainbows. So with that said I have decided to volunteer for the Lupus Alliance of America's Michigan/Indiana chapter. I am beyond thrilled! I am going to do PR one day per week for the Alliance spreading awareness. I just want to help get the word out about Lupus and its devestating effects on a person and their loved ones.

I have Cherish and April to thank for this move. They are always very vocal about how I inspire them but now I am returning the favor. They were my inspiration in my decision to volunteer. I figured if they can do all this for my cause then I should be able to do something for my cause. Everyone can do something is what I have always said. So, publicly, you ladies already know that I love you but now I am saying thank you. Thank you for your friendship, understanding and inspiration. Furthermore, I went seeking a volunteer opportunity but left the Alliance with the director telling me that he is going to attempt to seek funds to pay me a lil something, something. "What the devil meant for evil, God set it up for good." Until...

Team Cakesy

Welcome to the Team Cakesy blog! We started this blog as a way to raise awareness about the life changing effects of Lupus and gain support for the Alliance for Lupus Research. My best friend of nearly 25 years, Sharon, was diagnosed in February 2002 with Discoid and Systemic Lupus. Stay tuned to this site and check out her personal blog to follow her story and what its like for her as a young woman living with lupus.

On Saturday, September 19th, we along with many of our friends and family members will participate in the Walk with Us to Cure Lupus Walkathon on the Detroit Riverwalk. We encourage you to take a moment to browse our site and more importantly, learn more about the cause and the research. Please feel free to click the links to learn more about Lupus:

What is Lupus?

Who is the Alliance for Lupus Research?

ALR Youtube page

Related Information

Thanks for stopping by! We hope you will come back often, leave comments, check out the photo albums, share this blog with friends and even sign up to participate in the walkathon, or simply make a donation to Team Cakesy (if you were not led here by one of us you can feel free to donate under Sharon’s name). Have a blessed day!

Cherish

*Cherish, Sharon & April - Photo taken by JS along the Detroit Riverwalk*