Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis.
My case was outside the ‘normal’ perimeters because I was 47, in 2007 when I was diagnosed with sarcoidosis. This is quite late, quite old, for a sarcoid diagnosis. However, as we meet and learn from one another through social media websites, we know that each case is different. That is why sarcoidosis is called the “snowflake” disease. I had had pneumonia for three years, and I had taken numerous rounds of antibiotics. Then I lost my insurance and I just stopped going to the doctor. I had stopped smoking four years earlier, but still had a ‘smokers’ cough- at least that is what I thought it was. It turns out, it was sarcoidosis.
I was eventually seen by a gastroenterologist, and it was he who eventually attributed the many varying symptoms to the rare disease.
There are many body systems affected by this condition. Of course, my lungs are affected, but so are my spleen and my liver. Along with the liver involvement, I had esophageal varcies which are just what they sound like: the veins in my esophagus are distended the same way veins in your legs can become distended. My esophageal varcies burst and I bled internally, throwing up blood. Blood was coming from any place it could get out. It was this rather dramatic symptom experienced while I was working two jobs, which led me to the hospital emergency room, a diagnoses, and to a specialist in sarcoidosis. I was lucky to live near Cincinnati, where a leading research doctor Dr. Broughman, practices medicine.
I have done some drug trials with Dr. Baughman, including the study that led to Acthar being approved by the FDA to treat sarcoidosis.
Another serious aspect of my case of sarcoidosis is my liver involvement. I have a very low platelet count. A cat scratch requires pressure to stop bleeding and, that same scratch bruises for weeks. Still, along my journey, I have managed to re-establish my relationship with the Lord and I feel very blessed when I hear about people who have no support system. My family is my greatest team! I have never had the skin issues some speak about. If you were to see me, you would say “If she weren’t so fat, she wouldn’t need that oxygen” I have heard that as I walk past people. But it’s okay.
My muscles and bones hurt and there is a constant ache. I recently went through a period of pain pill withdrawal. Another reason to thank God! I had gone so far into addiction that I didn’t even see it myself. I’m 57 years old, I’m not stupid! I nearly lost everything last year helping my daughter overcome heroin addiction. Now, as a last resort to ease my pain, I am on another medicine, which is not good for my liver, but it is helping the pain. It is not an opiate. Still, I wish there were better pain control and I wonder if physicians realize how much sarcoidosis can hurt.
One final aspect of having a rare chronic condition is the cost.
Medical care and medicines are expensive. My husband is also disabled, and we live on a tight budget. Our hobbies and entertainment are limited both by our health and our income. One thing I do still enjoy is sewing – particularly making quilts for my family. My dear husband bought me a sewing machine last year and that has made the process of completing a quilt much faster. I am working on one for my nephew right now. I have to work on it when I am feeling up to it. I am usually best in the mornings and that is also when I have to get essential chores done too, like laundry and housekeeping.
Sarcoidosis is a variable condition. Sometimes there are flare ups that can keep you down for a day or two. Wonderfully sometimes you get several good days in a row too.
My message to others is this: Whether you think you can afford it or not you have to be seen regularly by a doctor and have regular blood work too. If you need help, contact the Patient Advocate Foundation. They are a great organization for getting support through the medical/financial maze.
