Chronic Flare-Up

I just wanted to share with you guys about the severe neuropathy flare that I’ve been experiencing for the last 2 1/2 months. So severe that I have seen three doctors just to get some answers and some relief for my whole body swelling to the point it seeped fluid.

My legs and feet were so hard that they didn’t even pit. My husband and I didn’t think it was fluid at first. It literally felt like I had fifty pound weights attached to each leg. I have to be assisted with everything including washing and eating. This pain is extreme. My hands were the worst. They literally have no feeling in them. Typing this is very painful but I had to share my experience. My hands felt like they have frostbite and they are on fire at the same time. Rubbing them didn’t help. The only relief was to submerge them into scalding hot water. This kept me up all night. Each joint was so painful that I couldn’t even hold a fork or cup. The main problem was trying to get the doctors to understand what I was explaining to them.
So the final diagnosis was both a rheumatoid arthritis and neuropathy flare at the same time. The treatment was to put me back on 10 mg of Prednisone again. I had been weaned off of Prednisone 5 weeks before after have taken it for 20 years for my Chronic Sarcoidosis. I was also prescribed Baclofen, which is a muscle relaxer for the severe spasms that started with the flare.

The swelling has receded some and my mobility is very strained because of the trauma to my body. The doctors have all stated that is all they can do because my body is too sick. This all to say, please keep me in your prayers.

Marilyn
Marilyn’s Fight For Life Sarcoidosis Advocate/Warrior

Marilynsfightforlife@live.com

After The Scare

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I really hate Sarcoidosis! This dis-ease has taken through many trials and tribulations over the last sixteen years. From being diagnosed in my lungs via a bronchioscopy and being scared to death each time I visited the doctor’s office thereafter. Every doctor asked if I was told how long I was told I was going to live to “you bet you should’ve never smoked.” The thing is, I never did. Next while participating in a clinical trial for a drug call Remicade back in 2001 at the University of Pennsylvania Hospital; Sarcoidosis attacked my sinuses. This resulted in three sinus surgeries and the loss of two of my senses; taste and smell. Later it has attacked my blood, bones, skin and eyes in no chronological order. Now, after an 11 day stint in the hospital after being admitted with congested heart failure and pneumonia, my blood pressures are hard to regulate. Went in with the first reading of 200/115. Scary as you know what. I was also told the my potassium and magnesium levels were dangerously depleted and I had to be admitted if I didn’t want to die. My family took it very hard and stayed with me after being admitted until 3 a.m. We cried, prayed and strategized because that’s what we do. I absolutely love my husband and children. So now what’s being said is that they believe that the Sarcoidosis is attacking my heart which is causing the irregularities in my blood pressures. I am on so many different meds for my blood pressure. One in particular, Hydralazine, causes severe headaches sometimes after I take it. So this brings me back to the title, after the scare of congested heart failure I am fighting for my life with a vengeance now. I want to live a long healthy life. My goal is to eventually get off of these meds and find a way to build my lungs back up to wean off of the continuous Oxygen. So all I ask is for prayers for a healthy recovery please.

As always, peace and blessings to you all. Until next time be healthy, happy and please support Sarcoidosis Awareness by donating via http://stopsarcoidosis.org.

Am I paranoid or what?

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Well here’s the problem, my baby girl has been running a low grade fever for the last couple of days with a headache. Her body aches too. Now not to long ago she was a passenger in a car that was involved in an accident. She was rushed to the emergency room and diagnosed with a mild concussion, neck sprain, bruised sternum and ribs. She stayed home for two days as instructed by the ER doctor and then returned to school. Her neck stayed stiff and sore. I am contacting the physical therapist tomorrow to get her started but I am wondering if she needs to go back to the doctor. Because I have been battling Sarcoidosis for sixteen years, I am paranoid about my children not recieving the testing to rule out them from being misdiagnosed like I was. Am I paranoid or just concerned? I just don’t want my children to hurt. Just the mommy in me I guess.

Until next time, peace and blessings to all and please be safe during this holiday season.

Marilyn

http://stopsarcoidosis.org/donate

http://gofundme.com/marilynsfight4life

A time of reflection…

Psalms 91:2

I will say of the Lord, he is my refuge and my fortress: my God, in him I will trust.

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