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My Sarcoidosis Journey

Posted on October 18 2014

My Sarcoidosis Journey
Some researchers say yay, and some say nay, to a patient having an early life of random illnesses, pains, and also in my case, asthma, and the corelation or predestination of sorts, for Sarcoidosis. No one knows which one is right at this point, but I certainly fit the “early signs” description, if there really is one, of autoimmune nightmares from infant to diagnosis!
On to the 1990's...I developed a nasty little repugnance to anything fragance! Cleaners, detergents,soaps, perfumes, shampoos, hairsprays, deodorants, etc. My lungs had a stinging feeling and felt as if they were tightening up. My eyes, nose and throat would burn in their presence.
In the summer or fall of 2001, I began to cough on exertion. Very soon I began to cough around the clock! I also felt as if I had the flu. It became a bit embarrassing. I had to think about where I went, like church, movies, etc. (I would be the noisy one in the back!) Eventually, on the worst days, I would have to give my freelance media jobs to other freelancers; too weak, too sick-feeling and too much coughing (Quietttt on the set!!!!!)!
By the time I met my husband in December of 2001, I had been to doctors six times, coming home each time with a Z-Pack to …..enjoy! Finally, I went to a different medical outfit, walked in and told the doctor, I will not take another antibiotic, now figure out what's wrong!!!!! He was so sweet! He did an xray and a big area was dotted and looked like a connect-the-dots page; I called it, The Demon!
He gave me one last Z-Pack, just in case it was a lingering case of walking Pnemonia. He didn't really think it was, though, so he also made an appointment with a great Pulmonologist for a week later, just in case!
Well, I ended up going to that Pulmonologist appointment! He ran and scheduled test, including a Cat Scan for the following week.
A little while after my Cat Scan, I went back to the Pulmonologist and he sat down with my fiance and me and went over the pictures. He ended with, “You either have Sarcoidosis or Lung Cancer”, I had never heard of Sarcoidosis, like most people, so I kiddingly said, “I'll take the S-word!” He was not amused and said, “You don't want either one!”
That was April 5, 2002. My fiance and I left there in shock. We went to the Justice of the Peace and got married that day! We were planning on it for a May date anyway, but after speaking with the doctor, we thought we'd better push it up, so I could get on his great insurance policy.
On to a new part of Virginia, a new type of insurance, a new home, a new family and on to a Bronchoscopy, with which it was confirmed, I had Sarcoidosis.
The second year into my journey, suffering and Predninsone; I signed up as a study patient at National Institute of Health's Lung Hospital. I learned so much from Dr. Park and was given as much assistance with my disease that they were allowed, but I knew I was on the Placebo because I had no side effects at all. A year later, when my part of the study was over, I begged my regular, and awesome, Pulmonologist to put me on the real study drug. He did and he was able to continuely decrease my Predinsone until I was off; after three years of Prednisone Hell!!!!!!!! We disagreed with the reasoning behind my Sarcoidosis going into remission, but we were both very happy! I was left with lungs that functioned worse than they ever had, my gray hair finally peaking out (Prednisone ages the body more quickly) and who knows how much extra weight!!!! While on Prednisone for three years, I felt I had my hunger and that of a 300 pound line backer!!
My media clients slowly stopped calling. I was weaker, more tired and had much pain from a former pedestrian accident. I was no longer the fast, efficent, freelancer I had been.
The years of Sarcoidosis being more quiet (in remission) went by quickly! I didn't research or think about it too much-in denial, really. I did begin to watch Bernie Mac on TV and kind of set him up on a pedestral of what could be accomplished even while suffering this miserable disease! Then in 2008, as I was working in a salon, the news of Bernie Mac's death came on the radio. The tears slowly trickled down my cheek as I worked. :(
By the time 2011 rolled in, we had no insurance and I was going to a free clinic. To my dismay, I slowly started feeling the familiar taunts of malaise: Shortness of Breath more often, feeling sick, flu-like, getting infections, etc. When my family moved in December of 2011, the physical exhaustion ushered in Sarcoidosis Flares and kicked me on my bottom for the next.....well.....to NOW! (2 ½ years later). Free Clinics are a Godsend, but they are not practices set up for managing rare or rarely-heard-of diseases! I now walk with a cane if I must shop a whole store or do any amount of walking over ¼ of a mile. Many days I'm in my bed, bored, but exhausted and recuperating. I barely eek by making it through 12 hours a week at work. My mind is not functioning like it use to ( worse than regular aging), I'm having all kinds of painful and strange symptoms from my neck-up. In pain all over my body all the time. Lots of symptoms and none specified as to what is causing them. Could be Sarcoidosis, I think it is, but maybe not. The old symptoms are certainly back, except for the incessant coughing!!!!!!
As I've learned to live despite my illness, I'm learning to reach out to help others with illness and proverty and I'm hurriedly trying to start an art business, so if there are darker days of illness ahead, I can leisurely create my own beautiful world inside my home studio. Beauty out of ashes!
Isaiah 61:3New International Version (NIV)
3     and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.

Thus starts another journey...............Holly's Follys Art Escapades............

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