Saturday, September 5, 2009

7 months sarcoid free

It feels like longer than that but I'm still sarc free. October isn't a good month for me something always happens I know, I know, no negative thoughts. I feel great and I gotta say the experience has changed me forever. I really think twice before taking anything for granted! 

Even when I was at my worst this disease taught me to so much and I'll never forget it. I'll also never forget what I went through and how it feels what some of you go through right now. 

Sometimes I even think about getting a tattoo (no I don't have any) as a constant reminder of how things used to be. Reminding myself sort of keeps me in check, so I think about it from time to time. I wonder if this makes sense to anyone else?

Monday, August 31, 2009

A fellow sarkie passed away today...

Steve Jefferson was my facebook friend. His wife Londonne Jefferson was also my facebook friend and she announced his death on facebook in the wee hours of the night. I don't know exactly of what sort of complications he died of but I know he was struggling with sarc for quite some time. even though I never met the man, I felt a deep sadness upon hearing this news. For those of you who are the praying type I believe his family will need it... Here is a support page his wife set up for him some time ago page on FACEBOOK Rest in Peace Steve...

Friday, July 31, 2009

Fox 5 news Interview with Kim Grant Sarcoidosis Patient

Kim Grant, sarcoidosis patient on the news with her Doctor explaining the disease to the Washington DC, Metro area and now on facebook!

It's a huge step in the right direction for sarcoidosis awareness. Fox did the right thing and Kim thanks for spreading the word. 




Monday, June 15, 2009

Sarcoidosis Awareness Society SAS

A 4 month petition online concluded with 723  signatures. This was presented on June 4th at the steps of No. 10 Downing Street in London, to be handed to the Prime Minister.
The petition started I believe, with Keith and from there Sarcoidosis Awareness Society (SAS) was created.

The Big 3 responsible for this are Charlette Doggett, Martine Caitlan and Keith Bigland. 

I take my hat off to these three as they are heros to the struggle. Their efforts in the UK have been tremendous! 

Here is their page on Facebook where you can donate and see pictures of their historic trip to hand over the petition.

Friday, May 22, 2009

Life Sarcoid Free


It's been a long time since I knew what normal felt like. I give thanks to the man upstairs for letting me feel good again. Even when I was sick I had plenty to be thankful for though. I realize that this may be temporary, but I don't live in fear of this disease coming back. I'm just thankful for the things I have learned about myself, and for the outlook it gave me. I lost some of the prednisone weight but not all of it. I normally don't post pictures of me but here's one of me taking a paddle on the Delaware River. Something that when I was at my worst I thought I would never do again. 


Wednesday, April 1, 2009

9/11 victim dies from dust exposures?

There is a small tiny little bitty article in some sort of news service maybe from a university in New Mexico that wrote about a 9/11 victim who was helping people get evacuated died as a result from getting sarcoidosis due to dust exposure.


9/11 victim dies from dust exposures?

I wrote, "This was written without any basic research of what sarcoidosis is. Medical science does not know what causes sarcoidosis, whether it’s hereditary or environmental. There is also no cure and the most frequently used treatment is steroids to suppress the immune system and inflammation since it is believed to be an auto-immune disease. Only 3-5 percent of patients die from sarcoidosis. I agree with the fact that the dust from 9/11 may have been the reason he got sarcoidosis since there are many cases. In fact a spike at Mt. Sinai Hospital in NY who treated many firefighters. However there is no proof or for that matter I wonder if there is a study being conducted at all.

The statement, “died from sarcoidosis which was caused by the World Trade Center dust exposures.” Is not a fact but more like an opinion because it can’t be proven.

Again I agree that may have been the case but I would’t want to ill inform people about this disease.

Oh, how I wish we had more facts."



I wish people that call themselves a news source would research a little bit before the writing. Maybe whoever wrote the article would have had more to write about. Thanks for writing about it anyways because we really need the exposure. Even it it's just this little piece.

Thursday, March 26, 2009

Weaverville Fire Chief Richard Smith


The Trinity Journal article makes you pay to view the article online which is just wrong. It's not cheep either. I'm writing out a check because it seems that he was a volunteer fire chief in a town called Weaverville, Ca. Since  Sarcoidosis seems to be attracted to people in the firefighting industry it's only right to collect some money for him so he can pay his medical bills. I'm not sending much because of current economical situations but I hope others will join me.


Donations for Fire Chief Smith may be mailed to the Weaverville Fire Department at P.O. Box 447, Weaverville, CA, 96093-0447.

These are the only two articles I could find on Mr. Smith:

Tigers hold benefit for fire chief

Sarcoidosis United

Sarcoidosis United
Sarcoidosis United