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
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