Lupus?! A wha dat?!

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

Tag: awareness

With gratitude

My sons and I, November 2020.

Three years ago I was in Brooklyn Hospital Center enduring what would become a three month long stay. I would spend Thanksgiving in so much pain that the last thing on my mind was a plate.

Everyday I would rise at 6, read scripture, and worship God while singing along with Richard Smallwood’s “Total Praise.” I would hold on until 9am or so when I knew doctors made their rounds, clamoring for updates on my condition. Could I go home soon? Would I make it home in time for my youngest son’s first birthday? I wouldn’t.

So standing in front of this hospital means another opportunity for me to show gratitude. You don’t have to make it. Tomorrow isn’t promised to any of us. If we’ve learned anything from 2020, impermanence stands at the top of the list. Life is truly a vapor.

What will we learn?

In September 2001, I was a tenth grader. I remember wearing my black and silver jersey, shiny black jeans, Raiders hat and And1 Moneys. I sat in the back row of French class and remember thinking this is the bluest sky I’d ever seen. Completely cloudless. A few minutes into class I remember the confusion of looking at that blue sky and hearing the worst thunder I’d ever heard.

Once we returned to school, my French teacher began to teach us about surrealism. We read French writers wrestle with this dream like state where the mind protects the body from reality. As we are in another reality altering event, I want us to take care in the lessons we learn from this. In 2001, we had an opportunity to learn about the love of our neighbor. We had moments where our smallness taught us about God’s bigness. Those lessons were momentary and faded in comparison to the ingrained lessons we kept. We kept the lesson that assured us that security is more important than privacy. We kept the lesson of fear. We kept the lesson that encouraged us to view the world through a lens of mistrust.

With this crisis we have an opportunity to love in a timely way. We can get closer even as we are social distancing. Let’s write to each other, send each other playlists, and create tournaments in video games. Let’s call our elders and make sure they are alright. Check on those of us who are always isolated. Let’s learn love.

Damian “Jr. Gong” Marley- Gunman World

 

Weekly wha dat?

In the past I’ve made a flurry of posts on Sunday night to share information about lupus thrivers, new medicines and the like. I’ve decided to condense this into one post and share my thoughts where necessary. Let’s see how this goes…

 

Lupus Initiative to receive $2 million in congressional appropriations bill

The Lupus Initiative, a lupus provider education program initiated by the Lupus Research Institute in collaboration with the federal government, stands to receive $2 million in the 2014 Omnibus Appropriations Bill released by Congress.

 

Lupus and Sjogren’s syndrome

New Genetic Clue to Lupus Is Found

Lupus 101: What You Need To Know About Latinas And The Disease

 

Marshall High School’s drama club has worked with numerous organizations to put together a fundraiser for Danielle Tuff, a senior who began home schooling last year after being diagnosed with lupus.

 

An autoimmune disease destroyed a Wadsworth woman’s kidneys, but the travel consultant was not going to let it take away her life, which revolves around traveling. So Dyana Shanahan now packs up a couple of hundred pounds of equipment and solution that provides her dialysis while she sleeps, cleaning out the toxins.

 

LUPUS AND JOINT PAIN: QUESTIONS ANSWERED

“Selena has been going full throttle the past few years and her Lupus is really catching up with her right now,” a source told Popdust. “She knows that she needs to take some time to address the disease and look after herself better if she wants to live a full and healthy life.”

 

RETIRED boxer John Melfah took on some of Britain’s most famous fighters during his long sporting career in sparring contests and title fights.

The Gloucester pugilist, now 53, is now facing his biggest battle yet as he fights back against debilitating disorder Lupus.

The next morning the pain had faded. Normally, I would just move on because with lupus I get all kinds of random pains. Now that I’m pregnant, I wanted to make sure everything was ok, so I called the nurse line. The nurse didn’t seem too concerned and almost talked me into not going in, but she said that if I was concerned enough to call, it might not be a bad idea to come in. So I made an appointment for later that morning with my doctor.

People who suffer from Lupus are more likely to develop certain nutrient deficiencies. It’s important for you to do your best to avoid letting this negatively affect your health.

 

Researchers have identified a genetic mutation that leads to lupus in mice and say the discovery could open the way for development of therapies that target the mutation in people.

A Toast to Lupus Awareness

A Toast to Lupus Awareness

Getting people to understand Lupus and how it works and patients to take better take care of themselves and manage the disease, they have a better outcome, they live longer, have better life quality- it’s a long road,” Ferris said.

Tina, a local woman with Lupus who attended the event, offered her perspective on living with the disease. 

“It’s either you allow it to take you or you take over it yourself,” she said.

Too sweet to be sour

Sometimes I think we’ve got it twisted. Phrases like “That’s life!”, “Life stinks!” or even “Life, I wonder, will it take me under? I don’t know,” permeate the social landscape. But no. Life is beautiful and for the living.

It is wholly transformative if one is able to see the good in everyday. The beauty of life in spite of its difficulties. It’s a recipe for endurance and the secret to overcoming obstacles.

That’s where my mind is nowadays as I think about my own fight against the cruel mystery known as lupus. I’ve been in this fight for over a year now. It has been filled with its hills and valleys but am thankful to say that I–in this moment–am feeling better than I have felt in quite some time.

This Saturday my wife and I will be in DC participating in the 7th Annual DC Walk to End Lupus Now.

We’d love your help.

Please contribute to our effort to end lupus once and for all. It’s an illness that affects over 1.5 million Americans with more than 16,000 new cases every year.

Although the walk is this Saturday, the 27th of April, we will be collecting donations until the 27th of June.

I’m doing this because I know that our efforts can help other people in this fight.

Pose: Fashion Designer Radhika Khanna Makes Yoga Easy

Pose: Fashion Designer Radhika Khanna Makes Yoga Easy

After she was diagnosed with lupus, Khanna had to take some time away from her fashion design business. As a designer Khanna is not content to follow others, she wants to be a leader. She is also a leader when it comes to managing her disease. It may be incurable but she is not giving in to it by any means.

Lupus: a civil war inside the body

Lupus: a civil war inside the body

Linda Jean was a dancer and, despite her illness, she danced with the Joffrey Ballet (a prestigious dance company in Chicago, Illinois and New York City, founded in 1956). She lived with lupus for 18 years before succumbing to it. For the Mundy family and others who loved her, it was a tragic loss.

Lupus patients to release live butterflies at Walk To End Lupus Now

Lupus patients to release live butterflies at Walk To End Lupus Now

On Saturday, March 30 at 9:00 a.m., the Foundation is hosting the sixth annual Walk To End Lupus Nowevent to take place at Lone Star Park in Grand Prairie.  Selected walk participants will release live butterflies to honor their lives and those who have lost their fight against lupus.  The event also raises funds toward programs, such as support groups, education materials, and research for lupus.

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. 

Brian Mooney

Educator, Scholar, Author

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