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!
