Carl DeLine

Living With Sarcoidosis – Alice

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Here is another interview based on conversations about sarcoidosis on Facebook. It is my hope that as people have more and more words they can be empowered to speak with medical people. In time we will discover patterns that will be beneficial in both the diagnosis and treatment of sarcoidosis. The interviewer is Carl DeLine, administrator of the Facebook group Sarcoidosis. The interviewee is Alice RM.

Carl: Hello Alice, thank you for sharing with us words about sarcoidosis. Can you tell us a bit about your background with sarcoidosis? How long have you been diagnosed, symptoms those type of thoughts.

Alice: I was diagnosed in 2008 after years of being missed diagnosed, I had been seeing a rheumatologist for five years. I had been living with a diagnoses of lupus.

Carl: So over the last six years you have battled with difficult symptoms. What were the key symptoms that caused the doctor to decide on sarc.

Alice: When I was diagnosed a doctor in Atlanta told me that I probably had sarcoidosis for about 18 years, I also have neuro sarcoidosis. She said with the symptoms I described and the calcified places on the brain I had sarcoidosis for a very long time.

Carl: Wow, that was a lot to deal with.

Alice: I had went to the altar and prayed I asked if he was through with me here on earth to let me come home, if not to help Dr. Naughton realize how sick I was and find out what was wrong with me the next day. I didn’t have an appointment with him, my daughter Jennie did.

Alice: I was once using a walker and at times a wheelchair.

Carl: Please tell us, was it the neuro sarc that affected the walking?

Alice: Neurosarcoidosis may affect any part of the nervous system.

Carl: So it has implications throughout the body

Alice: That Monday morning I sat in an exam room with my daughter Jennie, she sat on the bed, I in a chair. Dr. Naughton came into the room, took one look at me and said “what is wrong with you?” I looked up and said you know I have been sick for a long time and no one has found out what is wrong with me. He told me daughter to “get off the bed,” he said “your mother needs me.”

Carl: The intensity of the situation caused the doctor to pull out all the stops.

Alice: When I left that day I was scheduled for test, chest x-rays and blood work, after the chest x-ray, I got a phone call telling me to go for a CT scan of my lungs, after the CT scan I got the dreaded call on Friday that Dr. Naughton wanted to see me in his office on Monday. He said to bring someone with me. For years my symptoms was numbness, exhaustion, blurred vision sensitivity to light, pain in my bones, joints and muscles. I started having kidney stones, my salivary glands began to get stopped up and I would have to go to an oral surgeon.

Carl: Wow

Alice: The CT scans showed granulomas in my glands with inflamed lymph nodes throughout my chest it said it was lung cancer, lymphoma or sarcoidosis. My doctor wanted me to have someone there with me for emotional support.

Alice: I didn’t make it to Monday. By Saturday my feet were so swollen and blue I couldn’t walk. I was having trouble breathing. My husband called Dr. Naughton, who by the way is a family friend. He told Steve to carry me to the hospital that he would admit me.

Carl: Over the last years what have the patterns been for you. Remission, etc.

Alice: I have had kidney failure, liver failure, I have been diagnosed with esophageal gel dysmotility. I was recently placed on medicine for my heart.

Carl: Wow, again, just take a hug, I am sorry for all this “junk” it seems to be an everyday affair. Does it ever take a break?

Alice: As for my neuro sarc I feel that it is better. I was using a walker and wheelchair. I no longer use either. I have to have lumbar punctures to check my intracranial hypertension. I do take medicine for that also.

Alice: I do have a few good days, some days are better than others.

Carl: You are from Alabama aren’t you? Are there many people in Alabama with Sarc?

Alice: Yes, I believe there is. I have more and more people calling me stating that they or a loved one has been diagnosed with sarcoidosis. When I was first diagnosed I felt so Isolated I was told I was the only one in the area that had it.

Carl: You are very active with various aspects of Sarc awareness – can you tell us about it?

Alice: I decided to start a support group I knew there had to be more. Then when Bernie Mac died The Gadsden Times called and wanted to do a story. When it was published I had about 20 people call me just in the surrounding area saying “I have sarcoidosis.”

Alice: Some of them had been diagnose for years. They were told they were the only one that had it, I knew that something had to be done. I started calling the TV stations in Birmingham asking them to do a segment.. I have a good support system, my family friends and church family wanted to help. We started having fundraisers every time something would appear in the paper I would get more calls. I have about 40 people on my mail out list.

Carl: How many different events are you involved with?

Alice: Then Karen Reynolds came from Huntsville, which is two hours away, for a meeting. She asked if I would help her start one there. Of course I did. Huntsville is a bigger area. From her first meeting there has been a least 25 to 30 people at her meetings. She has a mail out list of about 50 or 60.

Carl: Your area seems to be more organized. What is the primary medical support for you?

Alice: I go to Dr, Joseph Barney at the Kirklin Clinic in Birmingham. Associate Professor of Medicine Associate Medical Director, MICU University Hospital, Director, UAB Multidisciplinary Sarcoidosis Clinic, Director, UAB ICU Clinical Research Consortium Division of Pulmonary, Allergy & Critical Care Medicine.

Alice: It wasn’t always like this. When I was first diagnosed the doctors here in Gadsden didn’t want to treat me because I was white, they kept telling me that white people didn’t get sarcoidosis and when they did they didn’t have to be treated.

Alice: I used to be an activity Director at a Nursing home. I loved my job. I’m no longer able to work, however I feel like my life just changed directions. I try to bring as much awareness I can to sarcoidosis. I try to fundraise with the money going to The UAB sarcoidosis Research Fund. People can call me day or night.

Carl: Is there a direction you would like to specifically share with people?

Alice: Listen to your body. If you know something is wrong be aggressive. Find a doctor that will be willing to listen to you. No matter how bad you feel set goals and make a list. Sometime my list is just to make the bed and make phone calls. It will help you keep going.