Laying the Foundation-One Brick at a Time

Monday, June 8, 2009

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...

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Sharon's Story

Blessed.
Even when my hair had fallen out in patches.
Even when my face was torn apart.
Blessed as my feet "don't work" as they should.
Even when my mother has had to help me complete simple tasks such as put on socks or sit up in bed because I was just too weak. I was still too blessed to be stressed.
Even as I lost 30 pounds in 28 days and gained 25 in 3 months, there was not a doubt in my mind that I wasn't blessed.
Even when my joints have hurt so bad that it felt like wild beasts were feasting on me.
Blessed even as I've experienced "lupus fog" and couldn't remember to take my medication consistently.
Blessed when my 3 year old cousin would place a loving touch on my cheek and I would cringe because it felt like I was hit in a bar brawl.
Or even when I would get in my car and totally forget where I was going.
Blessed when my medication had me so confused, dazed and inebriated that I would call my mom talking incoherently. She would cry because she was over 1,000 miles from her child and could not do something to take my pain away.

As you can see, Lupus did not and does not care how blessed I am. Lupus is mean and unforgiving.

But through it all, I have been fortunate to have angels at work on my behalf. At work, I didn't tell anyone that I was suffering from the disease because I didn't want to be treated differently. But when the flare really set in, lupus ratted me out. I may not have said anything but it showed in my appearance and demeanor. When I was tired and felt like I had a ton of weight on my back, I went to work. Not letting lupus win was more important than me resting. I would get to work and my supervisor, Trish, would notice how fatigued and out of sorts I was. She would politely take my hand and tell me to take my sick self home. God sends angels to protect fools and babies.

As it stands, I’m still on bedrest and this affords me the opportunity to reflect often now. Many times a day I ask God to bless each of you that has been there for me. I think about how my co-workers who hadn't even known me eight months rally around me like I was their kinfolk. Ms. Woods made me healthy meals (I am missing that cabbage, by the way) and Aquilla, Shamika, Shonda, Ebony and Adrian always made sure that I was alright, whether it was carrying a bag, a text message or picking up a prescription. As I went through, God sent his angels to camp around me. Never once did I think that I was set up to fail.

Not only did my childhood, high school and college friends rally around me but so did their families. For all the "Mamas"-Mama Jones, Mama Hayes, Mama Kelly, Mrs. Knight, Ms. Ylaine, Mama Terri, Mama White and Mama Maggie-your calls, love and support always brought a smile to my face and heart. Brynna, B'Onko, Shana (the flowers were gorgeous), Kyle, Marlon, Madame, Berlinda, Belinda, Tim, Tammi, Aunt D, Theda, Rosie and Cousin Nicole who all visited just to hold my hand and offer words of encouragement. Then there are Cherish and April. I strongly believe every single member of their families, dead or alive, checked in offering support. I appreciate all of the love from their families, corspes and those with pulses, alike. Friendship is a powerful thing.

I’ve collected many great people in Tallahassee, also. They held me together until my mama made it to me. Kara cleaned and Kenyetta cooked. Renasia, Seyan, Nicole, Bettye, Kelly, Sydni, Jean, Lamar and Shanna made sure my daily needs were met. It is a wonderful thing to know that all I had to do was pick up a phone and my immediate need would be met. I was also all too fortunate to stumble upon Pastor Williams and First Institutional M.B. Church who continue to keep me lifted up in prayer. How lucky and grateful I am!

If it's one thing that I know for sure it is that the devil stays angry with me. His wrath towards me is because of you. You have kept me encouraged. You have prayed for me. You have loved on me. You have shed tears with me. You have visited with me. But most of all, you have encouraged my mother. And loved on her. And eased her mind. I do believe that it is common knowledge that I love my mama. I love you for loving her. As many of you know I am my mother and my father's only child. They don't get do-over's. It’s just me. I am so indebted to my aunts, uncles and cousins. They have provided unlimited financial, emotional and physical support. My support well never ran dry. I am my aunts and uncles only niece. I am my little cousins only female cousin. I am all they have and, by the grace of God, that's why I fight.

Help me in my fight to find a cure for lupus.

There hasn't been any new medication in 50 years so awareness and research is terribly important. Most of you don’t know but I have been taking Chemo in small doses since I was diagnosed in 2002. Since this flare my intake has been increased dramatically. I know that I don't say much about having the disease but when Cherish and April put this team and website together I had to confront it. Since the inception of everything regarding Team Cakesy (which, by the way, is a nickname my mother gave me as a child) I have spent many nights and some days crying and removing mental scabs of the effects that the disease has had on me. In order for me to move on in peace, I have had to confront lupus.

Yes, I have LUPUS but LUPUS does not have me.

I know who is working on my behalf. I've been through a lot and I've pressed my way through. I will continue to press on because this fight is much larger than me and it's so much larger than we. I’ve learned that when we are great, we will be challenged. Challenges come to show us what we are made of. Challenges produce soldiers when we resolve not to be defeated. Please, take my hand, and join me. I’m a movement by myself but I’m a force when we are all together.

Together We Will Win!

Peace and Blessings, Sharon

TEAM Cakesy - A Lupus Walk

Sharon - Living with Lupus

Monday, June 8, 2009

Laying the Foundation-One Brick at a Time

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