3 Hello 3

The doctors from N.I.H. and John"s Hopkins described sarcodosis as an inflammatory disease that affects many different parts of the body and the small round spots, called granulomas, form in various organs and those spots hinder normal functioning of those organs. I developed a dozen lesions both inside and outside of my body. The skin lesions actually looked like third degree burns. The lesions in my lung caused scar tissue.

I educated myself about this disease because during that time there was very little to research. I learned that the lungs are the most commonly affected organs. Granulomas in the lung leave less space for the air exchange that needs to take place causing the lungs to stiffen. Other commonly affected organs are the skin, eyes, liver, and lymph nodes and in some cases the brain may be affected.

We now know that this disease or the symptoms are fatal because it took the lives of football great Reggie White and comedic genius Bernie Mac.

I was prescribed a cocktail of medications which made me sicker, then during an emergency room visit I met a young intern who was highly interested and she scheduled me to come in to meet with her superiors. During my visit to meet that team of doctors it was decided that I would discontinue taking the cocktail of drugs and go on 30 mgs of Prednisone and Nsaid. It was amazing to go from taking 17 pills a day to taking two pills a day. I weighed 137 pounds before the steroids, then after three months after I started on the Prednisone I weighed 267 pounds, but I could breath and the lesions stopped popping up.

There were the ignorant ass holes who commented on how fat I'd gotten. I'd rather be chunky and alive then skinny and dead.

Success!!! not quite because as mysterious as this disease is it doesn't come equipped with a timer. During various times after I was finally diagnosed I've had some near misses and there were times when I actually wondered if death would be better.

In 2003 while shopping with my oldest son I felt my left arm and left leg painfully twist inward and I felt weirdly disconnected. My son drove me straight to the hospital where I was told that I had a basal ganglia stroke, but my blood pressure and other tests were all normal. The doctors told me that I had to stay in the hospital for a weeks, but I got out of the hospital in three days. There was some damage. my short term memory is horrible, I can't read music anymore, my writing skills suck and I limped for two years. In 2005 the limping corrected itself, I blame everything on that damn trespassing sarcoidosis.

The joint pain is constant and the spinal degeneration is excruciating at times, but I deal with it. The shortness of breath at times is ridiculous, but I've learned to live with it.

Last year I suffered with excruciating stomach pains that were 100 times worse than labor pains. After months of tests and several hospitalizations I was diagnosed with gastroparesis. The gastroparesis checked itself, but the uncontrolled acid reflux eroded some of my vocal cords, so my once powerful voice sounds more like a hoarse low key broke rock star. My eyes are going through some changes, floaters, myopia and threatened detached retinas, but like everything else prayerfully will check themselves.

Sarcoidosis is a tenant who has violated my lease on life and I wish that I could evict it, but it has been one of the best professors I've ever had by teaching me how precious life is.

Thank you for your indulgence, understanding and valuable time.

Be Blessed...

%d comments
  • God bless you, thanks for sharing, a lot of people don't understand, you've said a lot what others who deals with this wanted to say, thank you, love your hair, be blessed and much prayers for you and all that are dealing with this disease

  • Thank you for sharing your story.

  • Thank you for sharing will be praying for you in Jesus precious name amen

  • Oh Verdell! I can't even imagine all of this that you have been through! It just makes me want put my arms around you and hug you. And with all this you have such a good spirit. I do have a question. Were any of those prior diagnosis really Sarc or you had those in addition to Sarc? I guess I was wondering because many folks say they were originally misdiagnosed as something else in the beginning. I have cardiac Sarc and was told this and then told by the same doctor after a year of the evil Prednisone (which did improve my breathing) isn't it great you don't have cardiac Sarc. I kind of likened that to being given chemo for cancer and then saying whoops you don't have cancer now. But that dr was wrong to tell

    Me that cause two other Drs say yes I have it in addition to lung, lymph noids, neuro, and some eye involvement.

    I wish for you much better health my friend. I am sorry about the change in the music you love. I do understand how precious that is as my son is a percussionist. I hope it is possible that gift will return to you.

  • Beautiful warrior

  • Xxxxxxx Yzzzzzz, I hate this disease! Thanks for sharing! My story isn't as bad but I too feel robbed of life at times. And too old before our time. Hang in there! We are all here for a reason!

  • Thank you for sharing your journey! I think that is one of the best descriptions I've ever seen to describe what we go through! (((HUGS))) MY SARCOID SISTER!

  • God bless you!

  • You're amazing and an inspiration. So much of your story is familiar to us. Stay strong beautiful lady.

    God bless you and your family. Father God let there be healing for us all.

  • Thank you for your wisdom! Mine is a story of struggle also. Thirty years now and a lung transplant that started as a double lung transplant. I'm doing fine now but living one day at a time with thirty pills a day. The worth period was sixty pills a day. God is Good!

  • May I share your post?