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

Feeling Miserable Today…HELP!

I don’t know what is going on. My fingers and toes are cold, tingly and numb. It’s driving me crazy.
I am constantly dropping things. Besides that, my muscle and joint pain is excruciating. Especially in my
hips and knees. Today I have resigned to laying on the couch because it hurts to move. I hate complaining,
but I am scared and worried about what is going on with my body. I am reaching out to my support community
to ask if any of you have experienced these type of symptoms?

Looking forward to seeing your replies.

Thanks,
Marilyn

MFL

Support Sarcoidosis Awareness!

Venting…

Image

 

One thing that I despise are those who don’t understand that I am in pain constantly. #SarcoidosisIsNoJoke #SarcoidosisAwareness

Why is it that everytime someone asks you how you are doing and you are honest with them, they still don’t get that this disease is not cured overnight? Is it just me that feels this way? Family members and friends who have asked me over and over again during the course of these 14 yrs., to define what Satcoidosis is and why it is that I don’t look like a “normal” sick person are the ones that irritate me the most. I know that I shouldn’t let them get to me. I know that I don’t need the added stress, but these are the ones who are suppose to love me and help me get through this. It’s just sad I think. Not for nothing, but I am in pain every day and I am fighting for my life while getting no help really from them medical community. It’s just a guessing game for them with me and my body acting as their guinea pig.

#FindTheCure does not just qualify for the “major diseases”; i.e. Cancer, Lupus, MS. We, Sarcoidosis patients a.k.a. Sarkies, need a cure too. We need funding for research. Last month was Sarcoidosis Awareness Month and there were many events held around the country. Personally, I invited News and Print Media and there were not any takers to my event. I sent letter after letter to no avail. I would like more attention brought to this disease. It shouldn’t take the death of a celebrity to bring attention. And even then, it’s a minute second.

I really didn’t expect, 14 yrs. later, to have to explain what Sarcoidosis is not only to my family and friends, but also to the medical personnel that is in charge of my care. Yes I wear oxygen 24 hrs. a day and appear to be overweight, but believe me, I wouldn’t wish what I go through on a daily basis on anyone.

Just me venting again. I invite your thoughts and or comments to this post.

 

IMG_3223913939992