Circle of Sarc

When you go through some lengthy medical hardships like we do it become a 7th sense sort of to know your body's state of health. Sort of like a heightened state of health alertness if you will. We know our bodies and when we are sick when to take a double dose of preds, how far it will get us. In a way some of us know more than doctors. At least after 2 years of dealing with this disease that is how I feel. 

The last 2 weeks I have been feeling a bit out of norm. Short of breath a bit of fatigue and today I found a lump under my jawbone that feels like an enlarged lymphnode. I have had plenty of them that's how I know what they feel like.

It's a a bit scary to think after 8 months on the path to normal that this thing might be coming back. I went to my regular doctor and she found a a lump in my stomach, she attribute it to scaring from surgery. I asked her to check my ace levels as I knew something just didn't feel right.

What ever happens happens, I'm ready for whatever comes I just hope it's not too bad I'm really focused on work right now.

Cross your fingers for me and hope it's just all in my head

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?

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...

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. 

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.

Sarcoidosis Awareness Society on facebook

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. 

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.