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

British Petition

I don't know how many Britons read this blog (not many) if you do then you probably already know about this petition and if not we'll here it is

It's a "petition the Prime Minister to Improve awareness and stimulate research of Sarcoidosis amongst the medical community and public alike to stop misdiagnosis and unnecessary surgery including organ removal due to the aforementioned misdiagnosis."

As per the petition. Please sign it if you are a British citizen.

They have 564 signature but more is needed!

Thanks Keith and also a big thanks to Martine for helping spread the word and being so involved

Wednesday, March 18, 2009

Something to write about

What now? The whole point of this blog was to put down how crappy I feel so other reading it wouldn't feel like they were the only one. I never made this a blog about my life in fact I don't even use my name, really. I wanted it to be about sarcoidosis, news update on m health and all things sarc. 

What to do? 

Tuesday, March 17, 2009

Friday, March 13, 2009

News from the OSU Medical Center

It always feels good to know people are working on it!

"Researchers first to analyze gene expression in sarcoidosis
A consortium of researchers, including those from Ohio State University Medical Center, are the first to assess genome-wide gene expression at the tissue level in patients with sarcoidosis. The study's findings appear online in the American Journal of Respiratory and Critical Care Medicine. "Our study provides novel insights into diseases pathogenesis and identifies novel prognostic biomarkers," says Dr. Elliott Crouser, first author of the study and a pulmonologist and critical care specialist at OSU Medical Center. Crouser said this study has led scientists to the discovery of new potential biomarkers of disease and new possible targets for treatment of sarcoidosis. Sarcoidosis is the most common interstitial lung disease and the cause is unknown."

Week 1

Well I think I'm out of the woods as far as the steroids are concerned. No withdrawal, no crazy symptoms. Seems like for the time being the sarcoids took a leave of absence. I'm happy but not like one would think. I was happy when the sarcoid was active. So when it left I thought it was great news but My hope aren't through the roof because I have been burned once before. Last year around spring, (this time) the sarcoid left and came back in the summer. So you can see why I'm walking on eggshells here. I'm glad that SOB is gone though and the best part is no more pills.

Wednesday, March 4, 2009

Day 4

Unbelievable, no issues getting off the prednisone. If I didn't have any issues by day 2 I don;t think I would have any by now really. I have my energy, I'm getting good night's sleep. It's like the nightmare is finally over. I do have flashbacks to where I was at my worst and that's something I can never forget. I wont count the sarcoidosis out for good because it's such a peculiar case but I'm glad it's gone for now.  Give my lungs a break you know?

Sunday, March 1, 2009

Day 2

walked around quite a bit in the mall, got tired but not destroyed like I used to. I guess I don't feel completely normal because of the hernia thing. That and I forgot what normal felt like. My nose is OK but I wish there was a little less congestion, it's not like before where I would wake up with dry mouth. I'm sleeping much better the last few weeks I think I can get used to it.

Sarcoidosis United

Sarcoidosis United
Sarcoidosis United