Sharon - Living with Lupus

Sunday, September 27, 2009

We Had a Funky Good Time

TEAM Cakesy is the best! Not only did we meet our pledge goal of $3,000 but we surpassed it by $1,500. All for lupus research. Thank you, Jesus!

Last Saturday was an awesome day for a Lupus Walk. The weather was just right and so was the energy. The Riverfront was alive with smiles and joyous spirits. I was so happy to have seen classmates that I had not seen in over 10 years. I'm glad that I was kept so busy that I didn't have time to meditate on what a blessing that was. I was kept busy from the time that I got to the venue til the time I made it back home. What's so funny is that you spend so much time preparing for an event and then when the event actually takes place, it flies by in a blur.

My mom had T-Shirts made for the team. They looked really nice with all of the "A"'s in TEAM Cakesy being made into a purple lupus ribbon. Whoever came up with that idea was really creative that day. (Okay, I must admit, it was me ;).

The team had an awesome turnout with about 60 folks. My friends and their parents were there. Even my friends who couldn't make it to the walk were sent by their parents. My friends from FAMU flew in and Shana and Cherish came from Houston and Chicago, respectively. April had the Wayne State University basketball squad to walk with us. My cousin, Rodney, was the D.J. and he did an excellent job. It's a whole week later and people are still talking about the D.J. that played the violin while doing his thing on the turntables. I'm telling you, last Saturday was just a good time! Shame on you for missing it!

My cousin, Cakesy (me), my cousin, and my Dad

TEAM Cakesy

Wednesday, September 16, 2009


We have met our financial goal...and passed it. Go us!

I am in Somerset, Pennsylvania taking on the habits of an insomniac. It's the wee hours of the morning and I am in the hotel lobby, wide awake, listening to Aretha Franklin and typing. Blame Whitney Houston for my condition.

She was asked by Oprah Winfrey whether she thought she would ever rise above her tumultuous situations. She replied, "my mama said I wasn't built to break." She then looked at the audience and said, "because of your love, I was not built to break." A tear trickled down my cheek. She didn't say anything that I hadn't heard before but her words seemed so prolific to me. It's as if at that moment, I got it. I got it more than I had ever gotten it before. And since I "had gotten it", I slid into my slippers and threw my Detroit Pistons blanket over my pajama-ed shoulders and made my way to the computer lab. My spirit just needed to tell you thank you. Thank you for your love. Thank you for not letting me break.

All of this comes on the hills of a Washington, D.C. Capital Hill trip that concluded earlier today. I was one of about 30 lobbyists that stormed the Hill lobbying for more funding for lupus research. In my mind we were successful but we will see when the fiscal budget for next year rolls around.

I am eternally grateful for your love, understanding and your willingness to support. In this "recession" we've raised over $3,000 and counting. There must be a God somewhere. Can't wait to see you on Saturday!

Friday, September 4, 2009

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!