My Speech for the Sarcoidosis Patient Conference in Cleveland, September 2018

My Speech for the Sarcoidosis Patient Conference in Cleveland, September 2018

I was so thrilled to do this amazing speaking engagement!

I was diagnosed in 1994 at a time when there wasn’t much information about Sarcoidosis. Prior to my diagnosis I had seen many doctors and all they could tell me is that I had asthma or they could not find anything wrong. I was miserable and was continuing to feel very ill and during this time I had lost so much weight, I had a constant cough and was always congested. One day I called my parents and stated “I think I am dying”. Mom and Pops took me to the ER. That is where I was told you have “pneumonia”. I noticed the nurse was looking very bewildered, I could tell something was wrong. I asked “what else is not right”. They admitted me to the hospital. I spent 6 long days in the hospital. My diagnosis “Sarcoidosis”.  My mind was like “what?” I asked the doctor to explain what is Sarcoidosis? He stated it was a medical mystery. Needless to say years later I was told it is an inflammatory disease that attacks the immune system. It is a lifetime disease stated the doctor.

I walked around for weeks stunned and in a fog wondering what am I going to do. I conducted my own research and found that the disease can be managed with medications. My first round of medications was prednisone. Sacoidosis had become my life. So many things were happening to me that I did not know what to do, I was scared. During my beginning years there was no medical help for me, until I met an allergist who knew something about sarcoidosis. I felt some relief. I stayed on prednisone for years until I got the “moon face”. I felt better for after being off the prednisone, but then I started seeing nodules on my arms and legs, and my back itched terribly. Bruises were the next thing I notices. My allergist sent me to a dermatologist. Thank God! He knew something about sarcoidosis. He put me on plaquenil. That was my miracle drug! By this time I was feeling really down and discouraged. More health issues were coming to the forefront. I had a gall bladder removal, a hernia repair, and a change of diet because I developed food allergies. I was falling apart physically and mentally. I sought mental health counseling, which helped. I needed something positive in my life.

I enrolled into college. What a good choice that was. I excelled in my program maintaining an A average. That got my mind feeling much better and I was focused. I knew that I was going to be okay until I got sick again. This time it was awful, I had mono, bronchiectasis, h-pylori, my skin started hurting, and more skin lesions appeared. All the while this was taking place, I was seeing an allergist, dermatologist, pain specialist, and a neurologist. Sarcoid was tearing my body into pieces. I now have osteoarthritis, degenerative disk disease, and degenerative thoracic spine, and most recently diagnosed with Fibromyalgia. Several doctors told me that Sarcoid did not cause the other issues I was experiencing. My gut instincts told me sarcoid did have some bearing on my other illnesses.  After being diagnosed with Sarcoid, 19 years later I finished my Bachelor’s degree in 2013. My allergist stated he could do nothing more for me and referred me to the Sarcoidosis clinic in Indianapolis. I was placed on methotrexate and gabapentin. I was feeling much better with these medications.

My brother had something similar to my disease (polymyositis). I finally had someone I could share my story with. My brother was my talking buddy. We would talk every morning to see how each other was doing. I had an avenue to release some of my frustrations. My brother was my support and, I, his. My inner strength was blossoming and I felt like I had taken control of my health again. It was amazing! Unfortunately, my brother passed away in 2015 and I lost my best friend. My brother’s death sent my life in another direction. By this time I was studying for my Master degree. So to honor his memory I set out to do something unconventional. I started a support group and my college coursework allowed me to do it as a class project. In researching how to have a support group I came across a company called Foundation for Sarcoidosis research (FSR). The information I needed to start a support group was invaluable.

OH I was in my element now. I was happy. My attitude was changing about sarcoidosis and how I was feeling good about it. God, my brother’s spirit, and my need to talk about sarcoidosis spun into something wonderful. I was going to connect with others who are like me. Nothing was going to stop me, not even sarcoidosis! In 2016 with my mother’s help I started Sarcoidosis Fort Wayne Support Group and I graduated with my Master’s.  I have never been so happy to have something of importance (except for my family). Last year 2017 I asked my family to refer me to the Cleveland Clinic, because I wanted to know where else in my body the sarcoidosis is located. I still need to have a PET scan completed, but for now I am ok. I have been very fortunate all these years to have insurance that covered most of my medical care.

Over the years to help me cope with my disease is I prayed a lot, I talked with my brother, my children, and my mom and pops, they are my support. I could not have gotten through this journey without them. To help relieve stress, I frequently get massages, write poetry, listen to music, and get plenty of rest. I recommend that if you do not have a hobby, find one. It makes a world of difference to have something positive to do. Gardening was my hobby of choice. By growing my own vegetables, gardening has help me to change my eating habits. One way to build your strength is to get involved especially with others who have sarcoidosis. With that strength you can have a positive outlook on life and you don’t think about your condition as much, and if your strength is bold you can begin to educate others on this disease. You can do this by starting a support group, lobbying your senators, making noise and talking about it. If you are passionate you can even start a fundraiser or a walk to raise monies for research, you may even want to become an ambassador for FSR. There are many ways to get involved and use your strength. Remember you are not alone, we are here to help!

This year I receive an email from FSR inviting me to become an Ambassador, I said yes. Training was in a couple of weeks and I was sick again. I went anyway and I was thrilled to be there. I met the ambassador who helped me with all the questions I had about having a support group. I was around individuals like me and it was amazing. I felt like I had made it home! What I hope to accomplish with this ambassadorship is to continue to raise awareness, to provide support to others, and enlist others to help us in this journey to get Sarcoidosis recognized as the rare disease that it is.

Another very important piece that everyone with Sarcoidosis should do is join the patient registry and take what you have learned today back to your doctor. Doctors everywhere need to be aware what is out there, so that individuals get the help they need.

Repeat after me:  “I have Sarcoidosis, but it doesn’t have me!”

Stay positive!

Thank you!