THANK YOU!

THANKS TO ALL THAT HAVE TAKEN THE TIME TO VIEW MY STORY AND BLOG WITH ME.  THIS IS A NEW EXPERIENCE FOR ME AND IT TAKES TIME FOR ME TO GET USE TO CHECKING ON MY OWN WEBSITE.  I JUST DON'T WANT ANYONE TO THINK THAT I'M NOT HERE - I AM!  PLEASE FEEL FREE TO CONTINUE TO NOTIFY ME OR EMAIL.  AGAIN, THANK YOU FOR THE SUPPORT.  WE ARE WORKING ON THE CONFERENCE FOR SPRING OF 2012.  HOPE TO HERE FROM YOU SOON.  KEEP IN TOUCH......

SHERRI S. BUIE

WHERE IS THE HELP!

I RECEIVED A PHONE CALL TODAY FROM A SARK IN MARYLAND.  SHE WAS SHARING HER STORY AND I WAS VERY SURPRISE TO HERE THAT HER JOB LET HER GO!  IF WE ARE SICK AND YOUR EMPLOYER DOESN'T UNDERSTAND THIS DISEASE -  DO THEY HAVE THAT RIGHT?  SOMEONE OUT THERE HELP US TO UNDERSTAND OUR RIGHTS?  HOW CAN WE GET TREATMENT IF WE CAN'T SUPPORT OURSELVES?  WE NEED ANSWERS.  HOPEFULLY SOMEONE WILL HELP US PUT A LIGHT ON THIS MATTER!

Today's Journey with Sarcoidosis

I have had the S attached to me for many years and we as Sark's we have to learn how to live with and not allow this disease to rule our lives. 

We have it ~ it does not have us! Sure we can't do the things we use or should I say the way we use to.  Take control of your Sark! We may not be able to function like we use to but we are still here and still able to do some things (thank God for that)!  As we are who we are ~ let's continue to help one another out and keep empowering one another.  I'm waiting to here from you (Sarks)!

What have you done on your journey with Sarcoidosis!

Lorretta's Story

Hi, my name is Loretta Brown and I reside in Plymouth, North Carolina.  I am 50 years old and have been diagnosed with  Pulmonary Sarcoidosis,  Cardio-Sarcoidosis, and Lupus.

                It all started one afternoon in 1996 when my sister was washing my hair and found a large lump/knot on the back of my neck. She asked me if it hurt or did it bother me, and I told her no because I didn’t even know that it was there.  She immediately made me an appointment to see a physician by the name of

Dr. David C. Franklin, MD, Surgeon.  He did a skin graft and needle biopsy at Washington County Hospital in Plymouth, NC, where he was a surgeon. This was all done in the matter of a week.  He told me that I would receive my results within 3 to 5 days.  It was then that I was given the diagnosis of having Sarcoidosis. He began to ask questions like:

·         Do you have any problems walking and getting tired?

·         Do you get short-winded or give out of breath quickly when walking, working, or even when taking a bath?

·         Are you doing any coughing?

·         Do you have any pain any where?

                “Sar-co-what?”  is what my sister and I both said.  Now what exactly is that she questioned him.  He then began to explain to her what it was and how it can or cannot affect a person.  He said that some people live with it all their lives and are not bothered with any kind of complications, and then there are others that are affected tremendously.  Well as it turns out I am one of those that it affects tremendously. 

                I was sent to a specialist in Greenville, North Carolina, and with more tests being done, was also given the same diagnosis along with another, Lupus.  Once again the question; what is Lupus and what affects does it have on the body? This was also explained to us.  All of this news was given to me in the same year 1996.

                As it turned out I ended up having to retire from my job early because I was no longer able to work.  I was feeling so bad that some days I would not even get up out of bed.  I had been running back and forth to the doctors so much that I was getting tired it.  It seemed like no matter what medications I was prescribed, nothing seemed to help.

                Then one afternoon in the grocery store I met and talked with Sandra Hines Smith and she told me that she had Sarcoidosis too. She told me about Dr.  Isham Huizar, a pulmonologist in Greenville, North Carolina, who is presently doing research on Sarcoidosis. I got his information and made an appointment.  He saw me immediately, needless to say, he has helped me tremendously. I have been included in his study program for Sarcoidosis.

                I had the opportunity to meet and talked with Sherrie Buie and her husband. They have been good supporters to me as I have been going through. We talk a lot, share stories, and always express words of encouragement to each other. I am ever thankful for my sister who has been there with me through it all. We look forward to one day seeing a cure for this disease.  I am thankful to God for giving me my Sarc friends with their inspiration and words of encouragements. Be blessed and always looking up.

Loretta Brown

WE ARE LIVE!

WHAT DO I SAY TO THE WORLD OF SARKS!  WHAT ARE YOUR THOUGHTS? 

WHAT ARE YOU ARE TRYING TO GET AN ANSWER TOO.  I'M YOUR STOPPING POINT.  IF I DON'T HAVE THE ANSWER I WILL DIRECT YOU TO THE CORRECT PLACE.  CAN'T WAIT TO HERE FROM YOU.  CONGRATS TO THE SARK BLOG! 

Living with Sarcoidosis by Sandra Smith

Sarcoidosis, What in the world is that? I can remember me asking my doctor that question. My name is Sandra Hines Smith and I have Pulmonary and Neurosarcoidosis. My journey started with Sarcoidosis in 2005 and was confirmed in 2007. After having surgery in 2005, I came down with an infection and was treated at the hospital several days and released. Boy was I happy because I felt I would be able to get back to my normal life style. Boy was I wrong! I begin to notice I could no longer walk for 5 miles and both my legs were very weak. Not only could I know longer walk those miles, but going up and down stairs became a struggle.

I decided it was time for me to make an appointment with my doctor and express to him my concerns about muscle weakness as well as being exhausted all the time. Thinking it could be my heart not pumping enough blood to my extremity a test was ordered. Well everything came back good so now we were both wondering what is really happening.

I was blessed with two daughters who are nurses; my oldest daughter Seanise wanted me to see a neurologist. I was given an appointment with East Carolina Neurology and my case was assigned to Dr. Robert Frere, MD.

Dr. Frere is my knight in shining armor. After doing many tests, a biopsy of my left thigh was ordered. My biopsy of the left thigh show inflammatory myopathy. My CT scan was cloudy and at this point a mediastinoscopy was ordered. The tests confirmed Sarcoidosis.

Last year I was introduced to Dr.Isham Huizar, a pulmonologist who is doing research on Sarcoidosis. Dr.Isham Huizar is my pulmonologist who has included me in a study for Sarcoidosis.

Wanting to educate myself about Sarcoidosis, I begin to search for information on the internet and I found the website for the Foundation for Sarcoidosis Research. The information was very helpful and explains so much to me that I didn't understand.

I searched for a support group in Eastern North Carolina but found out one had not been established and the closest support group was in other areas of the state. One day to my surprise, I saw the name Sherri Buie and I realized that I had seen that name before. I began to wonder if it was Sherri who worked for NCDOT. One day I needed to call the Accounting Department, and guess who I had to talk to concerning an invoice, Sherri. With much hesitation I finally asked her if she was the Sherri on the Sarcoidosis website and she said "Yes". We have not had the opportunity to meet in person, but hopefully one day we will. As we share this journey with each other we hope to inspire and encourage our fellow SARKS. God Bless!
Sandra Smith