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…

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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.

 

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Upcoming Event for Sarcoidosis Awareness Month

Marilyn’s Fight for Life

KICK Sarcoidosis Awareness Balloon ReleaseEvent in connection with JSOF

April 5, 2014 at 4 p.m. Sharp

New Castle, DE 19720

Free Event

R.S.V.P.: mommielynn@live.com

https://mommielynns.com/sarcoidosis

http://JSOF.org

T-shirts are available for order:

http://www.customink.com/signup/5en1u308

Sarcoidosis Ribbon

In an effort to create continuity and consistency throughout the Sarcoidosis Community as it pertains to Sarcoidosis Awareness branding, the A Song for Life Sarcoidosis Foundation in conjunction with a few other Sarcoidosis Organization Leaders decided to come together to create an “official” Sarcoidosis Awareness Ribbon that properly reflects the awareness colors and national symbol for the cause. This Sarcoidosis Awareness Ribbon has formally been accepted by Disabled World and included on their online Awareness Ribbons Chart (http://www.disabled-world.com/disability/awareness/ribbons.php). Please feel free to save a copy of this graphic to use for the purpose of Sarcoidosis Awareness. If you are unable to successfully download the graphic, you may request to have a copy of it sent to you directly by emailing: asongfoundation@gmail.com.

Thank you and remember we are stronger together than divided!
Jaz Owens, Founder ASFL Sarcoidosis FoundationImage

The Chameleon Disease by Tony Dajer

this is another one of my favorite articles from DISCOVER Vol. 22 No. 3 (March 2001)
Table of Contents <main.html>

The Chameleon Disease

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This time it showed up as dizziness and shortness of breath. But it could have appeared as fever, weight loss, or joint pains
By Tony Dajer

In a packed emergency room, it’s always a relief to see a straightforward case: 32-year-old male, light-headed, short of breath, vital signs normal.

Stressed young go-getters from Wall Street are common in this ER. Some days it seems every other patient arrives with palpitations, dizziness, chest tightness, tingling hands, and shortness of breath. All it usually takes is an electrocardiogram, some sincere reassurance, and they’re on their way.

“Mr. Murphy,” I said, entering the cubicle, “what can I do for you?”

“Don’t know, doctor. Yesterday I was in line for theater tickets. It was very sunny and I hadn’t had much breakfast. Next thing, I’m flat on my back.”

“You passed out? Were you hyperventilating? Standing a long time?”

“Not really,” he replied. “Then today I was still feeling dizzy and kind of out of breath when I got up.”

“What do you do for a living?” I asked.

“I’m an accountant.”

“No exposure to fumes, smokers, anything like that?”

“Nothing. I don’t usually pass out.”

I checked him from head to toe: utterly normal. No drugs, no excessive alcohol, happily married, healthy all his life. I had no reason to suspect any problem at all except perhaps a little tax-time stress.

“Everything seems fine,” I told him confidently. “We see a lot of this. I’ll get your discharge papers.”

On my way out I glanced at the pulse oximeter: 96. This instrument measures oxygen levels in the blood. A normal reading, especially in a healthy young man, should fall in the high 90s. I stopped and watched. It drifted down to 92.

“You know,” I said, trying to sound casual, “this machine says your oxygen level may be a tad low. We should verify it with a blood gas test. Hurts a bit, because I’ll have to take blood from your wrist artery.”

“Sure,” he replied, sounding relieved, “you check everything you need.”

The blood gas confirmed that his oxygen level was two thirds what it should have been. A chest X ray explained why: Around the center of Mr. Murphy’s chest sprouted potato-sized lymph nodes. Sarcoidosis. And I had almost sent him home.

The very name, just latinizing the obvious, hints at how little we know about the disease. “Sarco” means flesh; “sarcoidosis” equals fleshy growths all over the place. First described 120 years ago in a patient with purplish skin lesions and kidney failure, it has an underlying cause as mysterious now as it was then. The hallmark is granulomas: immune cells that cluster as they do when lymph nodes react to a local skin infection, tonsillitis, or mononucleosis. In sarcoidosis, however, the inciting villain remains unknown. We do know, however, that for some reason macrophages (scavenger cells) and lymphocytes (the immune fighters trained to remember pathogens) start secreting proteins that spark an immune-cell population explosion.

Sarcoidosis is a disease with a dozen faces. It most commonly affects the lungs. Doctors often first detect the disease when a routine chest X ray turns up enlarged lymph nodes in an otherwise healthy young person. In many cases, though, the first sign is shortness of breath. But sarcoidosis can also show up as a bout of fever, malaise, weight loss, or as a profusion of skin lumps and joint pains. Sometimes patients suffer eye inflammation, cheek swelling, and facial nerve palsy. In more worrisome cases, the granulomas can sprout in heart or brain tissue.

Most intriguing is a connection with tuberculosis. The knots of cells in sarcoidosis bear a resemblance to the lesions of tuberculosis. But when sarcoidosis patients are challenged with a skin test that evokes immune responses to tuberculosis, they tend to react less dramatically than would be expected if sarcoidosis were caused by a TB kin. A possible, paradoxical reason may be that a dramatic overreaction to the TB bacillus or its benign cousins produces the clusters of immune cells; perhaps the skin test is simply too trifling a stimulus for an immune system already coping with a TB-like infection elsewhere. But efforts to find DNA evidence of the TB bacterium in sarcoidosis lesions haven’t proved the connection.

The devilish thing about sarcoidosis is its unpredictability. In most parts of the world, at least half of new cases clear up spontaneously. On the other hand, many of the rest incur some form of permanent lung abnormality, and one in 10 cases shows a progressive scarring of lung tissue.

“Mr. Murphy,” I began, “you have a disease called sarcoidosis. It’s basically an immune-system overreaction. In some cases we just watch and wait. But given how short of breath you feel, the pulmonologist may decide to treat you with steroids to help shut down the immune response. The good news is, they are usually very effective.”

“How did I get this?” he asked.

“No one knows what causes sarcoidosis,” I replied. “What we know is that it tends to strike some groups more often than others, but we don’t know why. In the United States, for example, African-American women are about 15 times more likely to develop it than white males. In London, however, the disease is endemic among Irishwomen who have emigrated there.”

“Last I heard, my mom was Swedish,” he said. “Dad’s of German extraction. Not sure where the Murphy snuck in.”

The pulmonologist, eyeing the chest X ray, declared the case “classic” but said Mr. Murphy would still need a biopsy: “Lymphoma and some fungal infections can fool you.”

“Steroids?” I asked.

“We’ll watch him for a few months, see whether it progresses. These incidental pickups . . . ”

“But his blood gas was only 59, and he passed out yesterday.”

“Right,” he said, lightly smacking his forehead. “I knew that.”

The fainting episode, a potential harbinger of heart trouble, was the first symptom to study. Cardiac sarcoidosis can sometimes lead to sudden death in young people. On the other hand, our patient had been standing in the sun for a while, the oxygen level in his blood was already low, and he’d had little breakfast— three good reasons to faint. The electrical activity and structure of his heart— as measured by an electrocardiogram and an echocardiogram— were normal, so cardiac sarcoidosis seemed unlikely.

The following day, the pulmonologist examined Mr. Murphy’s windpipe through a fiber-optic bronchoscope. It looked somewhat narrowed, probably from the lymph nodes bunched around it, but nothing serious. With a tiny forceps, he poked through the cartilage to sample surrounding lung tissue.

Two days later, the pathology report came back: sarcoid. Lymphocytes had not only packed themselves into the chest lymph nodes but also spread throughout the delicate alveoli, the membranes where gas exchange occurs in the lungs. That explained the difficulty breathing.

“He’s decided to go for the steroids,” the pulmonologist said. “Even more advanced cases can remit on their own, but why wait for worse?”

Steroids are no free lunch. Their side effects can include weight gain, osteoporosis, and diabetes. And while steroids suppress sarcoidosis, they do not cure it. Treated and untreated patients, 10 years after diagnosis, seem to have the same rates of disease progression or complete remission. On the other hand, steroids can make patients feel better, even if the outcome remains the same.

Three months later, the pulmonologist gave me an update.

“The chest cleared like that,” he said, snapping his fingers. “And we’ve got the steroids down to almost nothing. He feels great. But keep your fingers crossed. With sarcoid, you never know.”

I am a wife and mother of three who has been battling several debilitating diseases for the last 13 years.  Unable to work, my family has stepped up to help run our home and keep it functional.  Unfortunately for me, my children have lost their childhood due to the caring for me and the upkeep of our home.  My husband had to give up his love of being a touring musician to having to find a 9-5 to help keep a roof over our heads and medical insurance for my overwhelming medical needs.  I’m not trying to make everyone feel sad for me, but if there was something that I could do in my lifetime, it is to show how blessed I am with the family that God has given me.  I honor my family all the time. ^_^

Live life to the fullest and never ever stop fighting…

Marilyn’s Fight for Life

I’m Blessed

 

I am a wife and mother of three who has been battling several debilitating diseases for the last 13 years.  Unable to work, my family has stepped up to help run our home and keep it functional.  Unfortunately for me, my children have lost their childhood due to the caring for me and the upkeep of our home.  My husband had to give up his love of being a touring musician to having to find a 9-5 to help keep a roof over our heads and medical insurance for my overwhelming medical needs.  I’m not trying to make everyone feel sad for me, but if there was something that I could do in my lifetime, it is to show how blessed I am with the family that God has given me.  I honor my family all the time. ^_^

MFL

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