So it’s been a while since I checked in. Last time I was experiencing a major flare-up which turned out to be a combination of neurosarcoidosis and rheumatoid arthritis. Very, very painful and life threatening. After being told that there was really nothing that can be done for me anymore except to keep me comfortable, because my body is very sick; I prayed and asked the Most High to help me. I am still fighting on, but to be truthful, my body is tired.
I am not able to get the surgery to fix my spine. The pain and spine specialist stated that pain meds are what’s needed to keep me comfortable. And most recently, my Pulmonologist stated that it’s time for me to start the process for a lung transplant. I am scared y’all. All of my doctor’s are in agreement. When we told, my husband and I looked at each other in disbelief. My husbands first question was ab
My muscles are weakening and twitching all the time. I have been dropping things constantly. My muscles feel like they are in a sleep state. That feeling you get when your leg falls asleep after being in a certain position for a long time. That annoying ache that you can’t wait to subside so you can move on. Well that’s not happening. From my neck down, all the muscles are in that sleep state. I feel like crying all the time. When I walk my legs buckle from up under me causing me to fall all the time. I use a walker as it is because of two recent Lacunar strokes. I fear this Sarcoidosis has finally won after 17 1/2 years. HELP!!! Anyone else suffer with this? I made an appointment with my neurologist in two weeks. It’s just lasting to that appointment. HELP!!!
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
T-shirts are available for order:
Like us on Facebook : https://www.facebook.com/MarilynsFightforLife
Finally up and running. Our family’s United front against Sarcoidosis. We’re fighting for a cure!
My name is Marilyn McNeill and for the last 14 years has battled a debilitating disease known as Sarcoidosis.
April is Nationally acknowledged as Sarcoidosis Awareness Month and I am hosting our very first annual Kick Sarcoidosis Balloon Release Event on April 5, 2014 at 4pm sharp in New Castle, DE. We have hopes to provide our Delaware Sarcoidosis patients and families, friends and supporters; an afternoon of food, fun and entertainment. For more information or if you are interested in attending, email me at: firstname.lastname@example.org.
We are looking for vendors and anyone who would like to offer their services ie, massage, beauty, etc… This is in hopes to help those with Sarcoidosis to forget about their pain for just one day. Wouldn’t you like to help?