Sharon - Living with Lupus

Monday, June 22, 2009

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...

Tuesday, June 16, 2009

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...

Monday, June 8, 2009

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)

finding a cure

warning bad flare day

say no to lupus take it down

my walk is personal cure lupus now

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 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...

Tuesday, June 2, 2009

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...