Lupus?! A wha dat?!

Just another emcee who gets free. Vessel of philanthropic vision fueled by theophilic purpose.

Month: March, 2013

Hardware and Software

I guess I was overdue for a tough day.

I don’t like to say I’m having a bad day. Complaining feels like a lack of gratitude and life feels more real to me when I cling to hope than wallow in despair. Even in the grips of the worse pain, fatigue or indescribable bad feelings, I smile when I realize that this condition is temporary, will not outlast me nor the promises God has for me. As the great Jimmy Valvano said about cancer, lupus “cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever.”

When I was still working full time, my coworkers would often ask me how I was doing today.*

I relished telling them that I was having a good day whenever I felt a glimpse of my “normal” energy and no lingering bad feelings. But on the all too frequent days when I was feeling less than myself, I liked to say that the software is good but the hardware is not cooperating.

When I knew that this illness had gotten to a stage where working full time and studying part time were too much to bear I got very low. I had no desire to quit, no desire to leave these wonderful communities I was a part of and did not want to let anyone down. The pressures of the hardware, its limitations and its brokenness, were making the software unrecognizable. 

I found solace in 2 Corinthians and reading Paul’s description of this treasure in earthen vessels. 

But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed— 10 always carrying about in the body the dying of the Lord Jesus, that the life of Jesus also may be manifested in our body. (2 Cor 4:7-10, NKJV)

 

I find myself with energy more often nowadays. I miss my communities terribly but remain encouraged because I know that lupus is merely a condition, it is not my lot in life. People often say, “I have lupus, but lupus does not have me.” My hope is that this, even illness, will find itself at the mercy of the master improviser, exchanging my ashes for his beauty and incorporating my cries for help into his endless rendition of “A Love Supreme.”

*(One of the most humbling aspects of my life now is knowing when people are asking me “How are you?” and knowing that they aren’t just being polite, they really care.)

The Consolidated and Further Continuing Appropriations Act

The Consolidated and Further Continuing Appropriations Act

“The Lupus Foundation of America applauds Congress for funding vital lupus research and education programs by passing The Consolidated and Further Continuing Appropriations Act(H.R. 933), which funds federal government operations until September 30, 2013. 

Canton Photo of the Day: Supporting Those With Lupus

Canton Photo of the Day: Supporting Those With Lupus

Vicevich, who suffers from Lupus, explained a little about the disease and announced that one day earlier $1 million had been donated toward a planned Lupus Center of Excellence, a patient support facility that would be part of the Hospital of Central Connecticut. 

 

No Need to Fear Lupus Medications

No Need to Fear Lupus Medications

Medications for lupus are called immunosuppressants. They reduce the immune response in a person so that the body doesn’t attack itself.

This study showed there is no evidence of a higher risk of blood cancer among those taking immunosuppressant medications.

2nd Annual Virginia Lupus Summit

Paste a Video URL

Mom, daughter duo tackle lupus together

Mom, daughter duo tackle lupus together

“During our struggle with lupus, God has truly blessed us,” said Tucker. “Through much prayer and faith, we’ve made it this far, and even though I have lupus, my main focus and concern has been for my beautiful daughter who has the more serious form of this disease. I’ve watched her fight many battles — always with her beautiful smile and never complaining. Her testimony is my strength.”

Spring Butterfly to benefit the Lupus Foundation of American’s Greater Philadelphia Tri-State Chapter to be held at Brigalia’s

Spring Butterfly to benefit the Lupus Foundation of American’s Greater Philadelphia Tri-State Chapter to be held at Brigalia’s

LaMonaca opened Treasures on Broadway — a 50 percent consignment, 50 percent new fashion boutique — four years ago.

Through her business, she donates proceeds to the Lupus Foundation from any items that sell after the 60-day consignment period and holds special sales throughout the year, but her biggest fund raiser is the Spring Butterfly.

Raising awareness to save lives from Lupus

“When you are in your 20’s and you are constantly sick, and you are being affected by having to go in and out of the hospital while your friends are partying and going to college, not only does it physically tear you down, it will break you down mentally and emotionally,” Sheppard said. “It is not easy to continue to smile and keep pushing. But that is what Skip to my Lupus is for.”

Taking steps to find a cure for lupus

Taking steps to find a cure for lupus

“When I was diagnosed, I was told the life expectancy was less than five years,” said Honi Kurzeja with the Lupus Alliance of Upstate New York. “I went home and cried and cried. It was a terrible situation.”

Investigational New Lupus Drug Shown Safe and Effective in Trial Led by Dr. Daniel Wallace, S.L.E. Lupus Foundation Board Member

Investigational New Lupus Drug Shown Safe and Effective in Trial Led by Dr. Daniel Wallace, S.L.E. Lupus Foundation Board Member

The new drug in development, epratuzumab, was shown effective and well tolerated in a Phase 2 trial led by world-renowned lupus expert Dr. Daniel Wallace, member of the Board of Directors of our New York organization, the S.L.E. Lupus Foundation.

Brian Mooney

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Lupus?! A wha dat?!

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