Becoming A Better Person Despite Pain
Hello my name is Frank Rivera. I
am a patient advocate for Sarcoidosis,
Parkinson's Disease, and all
other rare diseases. Unfortunately, I
have been diagnosed with multiple
chronic pain conditions. My two
major chronic pain diagnoses are
advanced sarcoidosis, in over 90%
of my body, all except liver and
kidneys, and parkinson's.
I have multiple other diseases like
irritable bowel syndrome, diverticulosis,
hyperthyroidism, and just
been diagnosed with glossopharyngeal
neuralgia, as well as uveitis,
and cataracts. The sarcoidosis and
parkinson's have been the most
complex. A year ago, April I was
downgraded from chronic to terminal.
The reason being both the sarcoidosis
and parkinson's have been
attacking my neurological system
at the same time and during this
"turf battle” they were blocking my
blood vessels from getting enough
oxygen.
You would think that would not be
a big problem clearing the vessels,
but due to my sarcoidosis my white
blood cell count has been extremely
high so any type of surgery would
22—iPain Living Magazine
have a high risk of dying during the
surgery. The same goes true with
my heart, I need a defibrillator/
pacemaker to stop my irregular
heartbeat, but I can't get that implanted.
Now with this glossopharyngeal
neuralgia is when either a
blood vessel, a tumor or my sarcoidosis
granulomas are pressing
against the 9th nerve in the brain.
The main fix for that is also surgery.
I am not a candidate for any
surgery at all.
The diagnosis process for Sarcoidosis
was a terrifying
experience for me and my
family. In 2004 while living
in Florida I had trouble
breathing, walking and heavy
fatigue.
I went to the hospital in Florida
and they took an x-ray which
showed spots in multiple lobes of
my lungs. I went to get a biopsy
and was told with the four words
you never ever want to hear " You
have lung cancer!" So, with that I
went through an extremely active
chemotherapy and radiation regimen.
I started weighing 125 pounds
and by the four years of treatment I
was down to 95-98 pounds. So, in
2008 I was told I was in remission,
you can imagine my euphoria at
that time. In 2009 I moved back to
New York. In 2011, I had trouble
with my irritable bowel syndrome
where I was in so much pain. While
they did an x-ray, the x-ray showed
some masses in my lower lobes. I
went over to the cancer center in
Stony Brook University for the biopsy.
They told me it was
"sarcoidosis." I had no idea what
By Frank Rivera