Wednesday, December 31, 2008

Goodbye 2008 Hello 2009

Happy New Year! May 2009 bring you energy and health. Time to make things better. If your not happy with your doctor then get a new one or get a second opinion at least. Set some goals, start fresh, save some money and maybe even lose a few pounds right? Well whatever your 2009 goals are I wish you the best 2009 ever.

Never feel sorry for yourself

I was sitting in the doctor's office reading November's people magazine. Michael J Fox was on the cover and it featured a story on him and his Parkinson’s disease. I used to love Fox in movies growing up in the mid eighties, Although I'm registered as a democrate he made me want to be a republican from watching growing pains. Well, He goes on to talk about this disease Saying that judging on how he feels he has 10 good years left. The meds that he is on helps him but the progression of this disease is unavoidable. There will come a time that meds will probably do him no good. He asks not to feel sorry for him because, ""is part of an amazing life." And it's not "an otherwise amazing life," he clarifies. "It's part of what makes my life amazing."

I think I understands what he means even though sarcoidosis is not as bad as having Parkinson's. It's Truly an admirable thing to say.  My Favorite Uncle Yiyo died this year, he had Parkinson's, it was sad to see him go from very active senior to just not being able to walk at all. This blog is all things sarcoidosis but I think we can take a couple of lessons here from good ol' Michael J Fox. 

learn to grateful for what you have, even if it is an incurable disease.

His foundation has raised over 130 million for research

The Michael J Fox Foundation

Wednesday, December 24, 2008

Friday, December 19, 2008

Tuesday, December 16, 2008


This is a reply to a discussion

Annemarie, speaking as someone who has had 3 biopsies I can try to tell you how it was explained to me. Sarcoidosis is a granulomatous disease. As you probably already know Granulomas are a bunch of cells that gang up and bind to create an area of inflammation, too much of this will render an organ useless. There are other granulomatous diseases as well such as tuberculosis, Histoplasmosis or Syphilis. When a tissue sample is taken for example from a spleen like in my case or maybe a lymph node it is then examined by a pathologist who looks inside the actual granuloma. If it were TB the granuloma inside would contain a necrosis and multinucleated giant cells or (Langhans giant cell) might be present as well, so they look at this and say well this is consistent with TB! and you have got a diagnosis. Well with sarcoids they kind of look into the granuloma and find nothing. Nothing that's right, nothing. In reality biopsy or not there is no test that can confirm 100% that you have sarc. Doctors diagnose you when everything fits and you are negative for everything else.

I had my first biopsy when they removed my spleen (rendered useless by sarc). That's when I got diagnosed.
Second biopsy last year when I had a huge mass above belly button. It ended up being a crazy huge lymph node. and the last one just a couple months ago on the lymph nodes on my face under my ear.

Hope this helps and good luck


Saturday, December 6, 2008

Comic Strip about sacoidosis

For those of you with sarc, these links might make you feel special. 
They are comic strips by the Gardner found on the Inspire FSR forums
They make me laugh and it something we can all relate to. The title alone pretty much sums up what's going on with me. These are all I could find if you'd like start from the bottom and work your way up. Enjoy

Rabid Barking Lymph Nodes 59-62

Rabid Barking Lymph Nodes 28-35

Wednesday, December 3, 2008

Farewell Brooklynite

I read this story today in "The Brooklyn Paper" A real local paper circulating in Brooklyn, NY. The article talks about a woman named Claudia Corwin and described her as a community leader who always looked out for others. At 61 she died, according to the article of she, "died from a cardiac sarcoidosis, a rare autoimmune disease that struck quickly and fatally in her heart on Nov. 25." It's sad to read about this because from the way they wrote about her she seemed like she still had plenty to offer her community but I'm glad they took the time to write about her. On the medical standpoint I wish I knew more relating to the sarcoidosis. My condolences go out to her father and her sister. 

Read the Brooklyn Paper's article here:

Sarcoidosis United

Sarcoidosis United
Sarcoidosis United