New Sarcoidosis Information Site (provided by FSR)

This is a great site and also it provides templates for Sarcoidosis pamphlets that we can use at our awareness events this month.

http://www.chestnet.org/Foundation/Patient-Education-Resources/Sarcoidosis?utm_source=alisonpartners&utm_medium=online&utm_campaign=sarcoidosis

Also, here is a reminder for my upcoming event. Remember to R.S.V.P. to marilynsfightforlife@live.com. Also, T-shirts will be available to purchase on that day.

MFFL Event Poster 2015

MFFL Event Poster 2015

MFFL T-ShirtThank you all and have a blessed day.

Marilyn McNeill – Founder

Marilyn’s Fight for Life KICK SARCOIDOSIS Campaign

phone: (302) 521-2816

email: marilynsfightforlife@live.com

Facebook page: http://facebook.com/marilynsfightforlife

New Event for Sarcoidosis Awareness Month

MFL

Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!

 

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Sarcoidosis Group of LI Event

Sarcoidosis Group of LI Event

Listed above and below are some of the upcoming events in April during Sarcoidosis Awareness Month. If there are others that would like to be added, please email me: MarilynsFightForLife@live.com.

1. Marilyn’s Fight For Life KICK SARCOIDOSIS Campaigns 2nd Annual Balloon Release Event will be held on April 26, 2015 @ 1 p.m.

Sharing a Poem

I came across a beautiful poem written by a dear family friend. It speaks to us who live with chronic pain.

Thank you for sharing this poem with me Mario. I bet you are surprised I still had it. 🙂

CLOUDS GONE BY

By Mario Poet Robinson

“CLOUDS GONE BY”

HAVE YOU EVER BEEN DRAWN TO A CLOUD THAT GOES BY

AND WISHED THAT WHAT YOU FELT COULD JUST DRIFT TO THE SKY..

LIKE WHEN THE PAIN THAT YOU BEAR BECOMES ALL YOU DISPLAY.

SO YOU SEARCH FOR OTHER THINGS THAT WILL TAKE IT AWAY…

AND HAVE YOU EVER REALLY WONDERED WHAT IT’S LIKE TO FLY,

TO THE POINT THAT YOU SMILE AND YOU TEAR AND YOU CRY…

LIKE ON THE DAYS THAT YOU FIGHT WITH THE HURT THAT YOU FEEL,

SO YOU DREAM OF OTHER THINGS THAT WILL HELP YOU TO DEAL…

BECAUSE OFTEN I AM DRAWN TO EVERY CLOUD THAT GOES BY

AND I DREAM THAT MY BURDENS COULD JUST DRIFT TO THE SKY…

LIKE WHEN THE HURT THAT I FEEL BEGINS TO SHOW ON MY FACE,

I SEARCH FOR SOMETHING ELSE THAT PUTS A SMILE IN IT’S PLACE..

SO YES, I DO WONDER WHAT IT’S LIKE TO FLY,

TO THE POINT THAT I SMILE AND I TEAR AND I CRY….

LIKE ON THE DAYS THAT I STRUGGLE WITH THE HURT THAT I FEEL,

I SIMPLY GAZE INTO THE SKY BECAUSE IT HELPS ME TO HEAL…

BECAUSE OFTEN THERE ARE TIMES THAT I FIGHT TO BE FREE,

AND FAR AWAY FROM THE PAIN INSIDE THAT WHICH IS ME…

SO SADLY I SIT ALONE AND LET MY FEARS START TO SHOW,

AND THEN I BEGIN TO CRY SO MY TEARS START TO FLOW…

BUT EVERY CHANCE THAT I HAVE, WHEN A CLOUD GOES BY,

I DREAM THAT MY TROUBLES COULD JUST DRIFT TO THE SKY…

SO SURELY, I WONDER WHAT IT’S LIKE TO FLY,

TO THE POINT THAT I SMILE AND I TEAR AND I CRY…

BECAUSE OFTEN THERE ARE TIMES THAT I YEARN TO BE FREE,

AND FAR AWAY FROM THE PAIN INSIDE THAT WHICH IS ME…

A FOR THAT REASON, I AM DRAWN TO EVERY CLOUD THAT GOES BY,

SO I CAN DREAM THAT WHAT I FEEL JUST “DRIFTS” TO THE SKY…

BY: MARIO L. ROBINSON 5-1-09

A Little Update, and a Good Article About Auto-Immune Disease

The Professional Patient

This summer has been the summer of medical procedures and surgeries for me. Last Thursday and Friday marked my fifth and sixth minor surgeries of the summer, and since then my body appears to have gone on vacation. No matter what I ask it to do, and no matter how nicely I ask it, my body will not cooperate. I am hoping that in the next few days I will regain some ability to sleep and take care of myself and my wounds. Sometime after that I will be able to start thinking about blogging in earnest again. Expect a mid-month Real Post.

Thank you for all you bring to my life, dear readers. I appreciate that you give me your audience and support. As a thanks, I leave you with a thought-provoking article on auto-immune disease and the tale of one person’s quest to get answers and get better.

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