Sarcoidosis United

The Bernie Mac Foundation

2011-08-14T10:29:00.001-04:00

I haven't been on the site for awhile but noticed they revamp and it looks great.

Bernie Mac Foundation

Love the video and the About Bernie section.

Please check it out and donate if you can.

Get your TeeGee sarcoidosis awareness shirts here!

2011-08-14T10:20:00.001-04:00

It's been awhile but The Gardener is at it again. Just wanted to let you all know shirts are still available and new hilarious ones added.

TeeGee has one of the most astute and warm sense of humor I have ever encountered and a hero in my book for doing so much to help spread awareness.

Get your shirts right here

The Gardener's Sarcoidosis Awareness Workshop

And meet Capt Sarcoidosis Awareness and find out what a Snarkie Sarckie is.

A little bit about the Gardener. (Copied and pasted from the shirt site)

theGardener is the founder of the grassroots Snarky Sarkie© Campaign to increase world wide awareness of Sarcoidosis. theGardener is the creator of the comic strip Rabid Barking Lymph Nodes© the world's first Sarcoidosis comic. He is also the author of My Pet Demon: A Sarcoidosis Journal© featured on the Foundation for Sarcoidosis Research Stop Sarcoidosis Community web site.

His journal, focusing on his own experiences with Sarcoidosis for over 20 years has a unique sarcastic twist and uplifting humorous tone. theGardener feels that humor is the best medicine and an effective way to convey a message and therein lies the core of the Snarky Sarkie© Sarcoidosis Awareness grassroots movement.

“ I am inspired by anyone who... in spite of tragedy or in the face of illness that is unfair and contrary, still throws a leg over the side of the bed and gets on with the business of living. That's guts and fortitude.” — theGardener

RIP Gene P. I. Duffy

2011-07-13T21:28:00.000-04:00

It's so sad that he passed away. Sarc just kept eating away at him for so long. Gene was at the point he couldn't take prednisone because the damage from preds was feared to be worst from that of sarcoidosis itself. Although I only knew Gene through facebook and the Sila site, we didn't really communicate much. I did know that he comforted a lot of people through humor. I'm sad to see him go and will miss his facebook posts. Don't worry Gene, your daughter posted that she will take good care of Shackleton.
I know you suffered a lot Gene now it's time to rest in peace.

Prayers go out to the family...

Sarcoid free 2 years now

2011-07-13T21:16:00.000-04:00

Haven't written much I have really been focusing on my goals and appreciating all the little things. Not sure if I'm out of the woods completely and don't really care. Not sure wether to call it remission or something else but I do know that it's important to take time to look around and smell the roses. As far as I'm concerned I fired my doctor (or so he said). I still think about it because I don't want to let myself forget.

Just thought I'd check in...

Jazz for a Cure

2010-09-22T20:33:00.001-04:00

A benefit for Sarcoidosis Research in Columbia, Maryland Featuring Alex Brown a Jazz musician unknown to me but that's not saying much. It's great to see this and I hope there is a good turnout for this very worthy fundraiser. Jazz may even be a good thing for those suffering from sarcoidosis and it's only 25 smakeroos. Come one come all Sunday Sept 26th between 3 and 6pm. Check out the website of the hometownannapolis for more details!

JAZZ FOR A CURE

I would love to hear from anyone who attends!

John Hopkins finds new lead that may bring us closer to a cure.

2010-09-07T08:27:00.000-04:00

Or at least an official diagnosis...

I didn't see this article until TeeGee posted it on his Facebook I gotta say I have been out of the loop, my job has been keeping me real busy.

Many years of research finally yielded some info that might help doctors find sarcoidosis and diagnose it quicker. That's great news because as you know this disease often gets confused with others. They were able to ID a protein that might be responsible for triggering sarcoidosis. So far they know there is a link between this protein and sarcoidosis so one can say they will put them in the right direction. This took 6 years folks! It makes me feel good though, like someone "is on it".

Here is the article's link

A CENTURY-OLD PUZZLE COMES TOGETHER: SCIENTISTS ID POTENTIAL PROTEIN TRIGGER IN LUNG DISEASE SARCOIDOSIS

Great find TG thanks!

Hike for Lung Health - Team Sarcoidosis

2010-09-06T17:31:00.000-04:00

Unfortunately this is only going on in Chicago, but you can still help by doing a virtual hike and raise money for this cause. It seems like there is an increase in sarcoidosis awareness. Can we thank Bernie and Mayweather Jr.? Either way, I'll take it! Awareness is good folks so do what you can here is the link to the FRS site with the Hike for Lung Health Team Sarcoidosis! If you don't feel like Hiking you can always send some money because in the end that's what it's all about. Money for research so please feel free to give them some.

Have a wonderful Labor Day!

http://www.stopsarcoidosis.org/lungwalk/

Appreciate the little things

2010-03-27T22:42:00.000-04:00

I have written in the past about how much of the little things are appreciated as a result of things in your health sucking all the time. It's gives me great pleasure though to see others with sarc taking notes on the tiny little things that are good that for most people would just discard it as normal of even worst it just goes unnoticed. I guess it take a major disease or sickness or even scare to get people to realize how precious life is sometimes. All you have to do is take a minute and look around. Yeah things are bad your breathing is shit, you can't even breath through your nose, your tired and you wonder if you can even take another step. Bloated from all the drugs can't help feeling like your not even yourself anymore and you forgot what normal felt like. I guess that is what makes it easier to notice the tiny things that make us happy and why others don't even notice.

NYC Judge Dies from complications of sarcoidosis (Lungs)

2009-11-10T06:39:00.000-05:00

An article like this only supports what I believe, that there is a lot more among us than we think. Who knows how long he was dealing with this disease. He passed away at 74.

New York Times article on Charles P. Sifton

I also copied and paste the article below fearing it might not be available later.

November 10, 2009

Charles P. Sifton, Judge in City Case on Term Limits, Dies at 74

By DOUGLAS MARTIN

Charles P. Sifton, a federal judge in Brooklyn whose rulings paved the way for women to join the New York Fire Department and for Mayor Michael R. Bloomberg to run for a third term, died Monday at his home in Brooklyn. He was 74.

The cause was complications of sarcoidosis, a lung disease, his son Sam said.

Judge Sifton handled many major cases in more than 30 years on the bench, many of them as chief judge of the United States District Court for the Eastern District of New York.

He presided over civil-rights and school desegregation cases as well as trials of Mafia chieftains, Irish terrorists and Joseph M. Margiotta, the Nassau County Republican leader convicted in 1983 of mail fraud.

The judge’s term-limit ruling, in January, stands out for its impact on recent New York City politics, with the mayor’s re-election last week.

Judge Sifton’s decision upheld a law passed last fall by the City Council to allow incumbents to run for a third term. The Council had followed the wishes of the mayor and some of its members in overturning a two-term limit endorsed by voters in two referendums in the 1990s.

Judge Sifton rejected arguments by Comptroller William C. Thompson Jr., who became the Democratic mayoral candidate, and others who filed suit to reverse the Council’s action. They contended that only another referendum could overturn the limit and that voters’ constitutional rights to free speech and due process had been violated.

Judge Sifton ruled that officials elected by voters are entitled to reverse direct referendums.

“To hold that overturning a law enacted by referendum infringed on First Amendment rights would effectively bar repeal, amendment or revision of all laws initiated by the people,” he wrote in his 64-page opinion.

In 1982, Judge Sifton ruled that a Fire Department test of physical strength and speed discriminated against women. He ordered that a new test be developed and that 45 women who had sued the city be hired. The women had to pass an interim test that emphasized agility and stamina over strength and speed.

Judge Sifton also ordered that a new, nondiscriminatory test be prepared. The city appealed the order to the United States Court of Appeals for the Second Circuit. That court approved the new test, and in 1987 the United States Supreme Court refused to hear arguments on the appeals court’s decisions, allowing the test developed under Judge Sifton’s order to take effect.

In 1992, a decision by Judge Sifton put him in the middle of a controversy over a pill, banned in the United States, that induces abortion. He said the United States had acted illegally when it seized pills containing mifepristone, sold under the name RU-486, from a pregnant woman who had bought them in France, where the drug was legal.

The Supreme Court reversed his decision. But the publicity the case generated was seen as helping to build support for the eventual approval of the drug in the United States in 2000.

Charles Proctor Sifton was born in Manhattan on March 18, 1935, and graduated from Harvard in 1957. He was a Fulbright scholar in Germany, and graduated from Columbia Law School.

He worked on the staff of the Senate Foreign Relations Committee and in the office of the United States attorney in Manhattan, where his last position was chief appellate lawyer. He then worked in private practice.

President Jimmy Carter appointed him a federal judge in 1977. Unlike many federal judges, he had never belonged to a political organization.

Judge Sifton’s marriage to Elisabeth Sifton, a prominent book editor and author and the daughter of the theologian Reinhold Niebuhr, ended in divorce.

Besides his son Sam, the restaurant critic of The New York Times, Judge Sifton is survived by his wife, the artist Susan Rowland; two other sons, Toby and John; and three grandchildren.

R.I.P. Steve L. Jefferson

2009-10-24T08:53:00.004-04:00

Steve Passed away August 30th of this year. He was only 38 years old. The news was shocking as I found out on my news feed in facebook. I froze for what seemed like forever. You know when 10 billion thoughts go through your mind I guess that means you brain is trying to process the information. I never personally knew Steve but I have exchanged messages with him several times. I can tell you what I had admired about him most is that as bad as his condition was. He never felt sorry for himself and I never saw him complaining about his symptoms. That's a role model and a hero in my book. I want people to know that. I would love for all those that read this blog entry to go to his facebook tribute page and just write a message for Steve. Even if you don't know him. If you have sarcoidosis and are dealing with this disease or know someone who is dealing with it then you in a way you did know Steve Jefferson. All of us who dealt with not being able to breath, night sweats, Pain, and too many other to mention symptoms then You knew who Steve was.

Something really important if we are to advance medical treatment or just find out more about this disease through research in the medical community is the spreading of awareness. You have this disease and don't like to talk about it I suggest you do. I start off by Mentioning Bernie Mac because everyone knew who he was. Sometimes some of us look great on the outside and on the inside we feel like crap, well that's something worth mentioning too. Tell as many people as you can and do it because you want them to know this is out there not because you want them to feel bad for you. Wear your sarcky Shirt, your red Sarcoidosis bracelet and display the purple ribbon so people can see it. Steve always talked about spreading awareness, so for him I will do the best I can to do just that.

One of the reasons breast cancer cases are down in current times is because there has been so many advancements in early detection all thanks to awareness efforts.

If your the praying type then prayers are needed for the Jefferson family as they get through this tough time.

His wife Londonne is determined to pick up where Steve left off in spreading awareness. She is a strong woman who is going through a lot with her kids and her family. Let's show her she is not alone in this struggle and visit the facebook tribute page.

Steve's Facebook page, stop by learn more about him and say hello.

Mayweather's "Rare Lung Disease"

2009-10-14T18:51:00.000-04:00

An article came out on Floyd Mayweather Sr and mentioned his "disease" sarcoidosis. I wish the article would have gone into it a little bit more but hey at least they spelled sarcoidosis correctly right?

I feel bad for Mayweather even though he probably wouldn't want anyone to feel bad for him. Especially since he can still whoop somebody's ass, mine included. I just hate for people to have to go through that period. I'm glad he's feeling better as per the article he is eating organic foods and is doing well but no mention of what medication he is on if any but the article does state that thet "his rare lung disease, sarcoidosis, is under control, ." Whatever that means...

I wish him well and hope he really does have it under control. I also hope he talks about it more because the more he does the more coverage and exposure this disease might get.

Here is the article http://www.fighthype.com/pages/content5912.html

Paranoid?

2009-10-08T15:49:00.000-04:00

Well, I guess it's all in my head. My primary doctor and I got ahead of ourselves here. Swollen lymphnode in my neck + Coughing+ High ace levels= Nothing? After a lung scan and breathing tests my specialist in New York Dr. Alvin Tierstien said to me that I was still sarcoid free. He then asked if I'm really there because I miss him. Joking aside I still need to find out why I sound like I smoke 5 packs a day for 100 years. My voice is really hoarse and and it doesn't hurt. I gotta go back to my primary so she can explain the ace, the lymphnodes and everything else. I guess I'm just being paranoid?

86

2009-10-06T20:53:00.002-04:00

Blood work came back and ace levels up to 86. Just as I suspected after finding a slightly enlarged lymph node. I thought it was gone and carried on as such, although it's not confirmed until I go into my pulmonary specialist to do x rays my coughing today tells me what's coming.

Sad yes, feel sorry for myself no, I know what I need to do now.

I'll do it with the help of family and friends including some sarko's I met along the way.

hasta la proxima!

Note to self:

Do something about the high cholesterol while your at it.

Circle of Sacr

2009-09-27T16:21:00.003-04:00

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

2009-09-05T21:58:00.002-04:00

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...

2009-08-31T08:54:00.002-04:00

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 saddness 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

2009-07-31T19:00:00.003-04:00

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

2009-06-15T20:13:00.004-04:00

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

2009-05-22T19:23:00.003-04:00

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?

2009-04-01T18:41:00.004-04:00

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.

Weaverville Fire Chief Richard Smith

2009-03-26T21:14:00.004-04:00

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:

Partial article from the Trinity Journal

Tigers hold benefit for fire chief

British Petition

2009-03-26T18:39:00.004-04:00

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.

CLICK HERE TO SIGN PETITION

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

Something to write about

2009-03-18T18:25:00.002-04:00

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?

Happy St Paddy!

2009-03-17T18:50:00.003-04:00

News from the OSU Medical Center

2009-03-13T08:48:00.001-04:00

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."

The Lantern, Ohio State University Newsletter article

Week 1

2009-03-13T08:43:00.003-04:00

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.

Day 4

2009-03-04T21:00:00.003-05:00

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?

Day 2

2009-03-01T07:24:00.003-05:00

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.

Day 1

2009-02-28T09:11:00.002-05:00

Day one off the prednisone, no hang ups as of yet. I do feel a lump in my thought but it's been there before and it's gone now. I feel lighter so I should take advantage of that and kick off a weight dropping campaign, might not be a bad idea I have a vacation coming up.

Prednisone free (for now)

2009-02-26T18:57:00.001-05:00

OK the latest, My lymph nodes on my face shrank down so my face no longer looks like I'm storing nuts for the winter. I lost 8lbs thanks to last's weeks barfOthon. I went in today for my check up, and on Xray my lungs are really clear besides some scarring. And my breathing tests came back good. I'm currently on 5 mgs of prednisone and for the first time Dr. T just told me to quit. No going to 2.5 and then 1 mgs. Just no more. Last time I stopped I had to ween down to 1 mgs and I was declared in remission. This time we'll see. I'll stop the preds and see how long The sarc will stay away. What's weird is that this happened quick just last week I notice my lymph nodes were gone.

Now I got the hernia thing to take care of but I'm thankful it's just that I thought something else was wrong with me.

I don't want to say I'm in remission yet but the fact that my x rays looked so good compared to 6 months ago make me feel good about the whole thing.

Another trip to the emergency room

2009-02-22T21:01:00.003-05:00

i just got admitted to a room.
i was having breakfast around 11am when all of a sudden i get hit with this pain in my abdomen. im thinking it's my lymph nodes again. after some time the pain intesifies sorry for all the typos btw crappy touch screen keyboard. the pain was unbearable, long story short they think it's small bowl blockage maybe caused by hernia or old scar tissue from previous surgery. they say it's not sacoid related but ibwas thinking if it ws hernia it might have been caused by recent surgery

the pain went away and i feel good no meds yet just a ct scan

The above is what I wrote from the little internet device from the hospital room. I just got home. I spoke with a surgeon who thinks it's a hernia in my navel area. Possibly left vulnerable from a previous sarc related surgery in that very same spot.

The pain was just unbearable, I thought I was going to pop out one of those aliens like in the movie.

Missed a toasters show tonight because of this.

Crap for a Cure!

2009-02-20T23:03:00.006-05:00

This is a part of a grassroots campaign lead by The Gardener to raise awareness and in this particular case Money for sarcoidosis. I was emailing back and forth with TG telling him that I wanted to hold a garage sale and send the proceeds to FRS Foundation for sarcoidosis research. He thought is was a great idea and took it a step further by designing some banners and yard signs. OK them we got ourselves something here now.

TG thanks for your support on this. I am probably holding this garage sale very soon, as it's still too cold up here. I will also post all of the fun on here and who knows maybe together we can raise a significant amount of money this spring for FRS . I'm getting ready now with the following:

Make an inventory of everything I want to sell, (TVs stereos books and furniture mostly.)

Get the signs and banners!

Have my sarckie shirts clean and ready to wear that day!

Send out an invite to all the local sarckies!

Have some fresh coffee in the AM and some hot dogs on the grill in the PM

check with the town to see what date

Put in play some cheep advertisement that focuses on the neighborhood (town newsletter, craigslist)

Any other ideas I'm all ears!

Sarc sufferers dealing with other illnesses

2009-02-15T13:40:00.002-05:00

Friday I was having lunch at a spot I haunt in my route. I had some pork with rice and veggies. I carried on with the rest of my day. I had a meeting that evening and after the meeting we had dinner at the office. I noticed I was a bit full still from lunch so I just sort of had a sampler plate of everything that was there. It was buffet style as they brought in some caterers. On my way home around 8pm I called my wife and let here know I wasn't feeling to good and when I got home an hours didn't even go by until I started to regurgitate. I was praying to the porcelain gods for the next several hours until the diarrhea started, I had shivers was really cold despite the heater being on full blast. At about 2am I had enough and told my wife to take me to the hospital. By this time I'm dehydrated can barely speak, can't breath I'm Fatigued to the point that when I walked in to the emergency room they put me in a wheelchair. Well I know it's too late to make this story short but I'll try. They hook me up to IV fluids and gave me something to stop my vomiting. However I had to runs and I soiled myself while there, (never in my life). When the doctors came to look at me they were concerned because my blood work showed my white blood cell count way up and he said this might be the prednisone or it might also suggest something like Chrons disease since It runs in my family. I looked at my wife and told her not to worry it's not chrons I told the doc that My white blood cells are high because of the steroids and opted not to do the ct scan they wanted me to do. The couldn't diagnose me but I feel pretty confident that it was contaminated pork that did this. I finally got home yesterday around 8:am and rested the entire day making sure to keep hydrated .

My thinking is and I'm not sure about this so maybe someone can clarify, but those of us with sarc when we get hit with something like this or even just a common sold hits us harder that healthier folks? It sure seems like it, that or I'm just a big baby.

It just so happens the receptionist at the hospital also had sarc. Interesting huh? we are out there!

I'm at home resting up but I am feeling better now although I do have a tightness in my chest I started eating solids foods today. I should be good by tomorrow.

UK sarcoidosis awareness petitions UPDATE NOW AT 564 Signatures!

2009-02-12T07:36:00.004-05:00

He has promoted this on various sites and now he is featured in the local paper in Linwood where he lives.

Great Job Keith!

Lingwood man petitions prime minister about disease

Keith Bigland from Lingwood who suffers from the disease sarcoidosis, Photo: James Bass.
SARAH BREALEY

12 February 2009 12:10

Sarcoidosis petition on petitions.number10.gov.uk

A Norfolk man is petitioning the prime minister for more support and information about a little-known medical condition.

Keith Bigland, 41, from Lingwood, near Acle, has gathered 330 signatures so far on his petition on the Downing Street website. He suffers from sarcoidosis, a debilitating condition which causes tiny lumps in or on the body. It can affect many organs, particularly the lungs, and can even be fatal.

Mr Bigland's condition is mainly in his liver and causes him headaches, vision problems and loss of memory which makes even making a cup of coffee a difficult ordeal.

He has had to give up his job at Sainsbury's, although he hopes to return there when he starts treatment. He has been suffering from symptoms for three years and was diagnosed just over a year ago, but is still waiting for treatment because the condition is so little-known. He is also a carer for his wife Sue, who has a long-term medical condition.

His petition calls on Gordon Brown to promote awareness of and research into sarcoidosis, and warns that misdiagnosis can even lead to organs being removed wrongly.

He said that he and fellow sufferers have been buoyed up by the response to the petition. He said: “The petition has lifted everyone's spirits. It is all about awareness at the moment and this is helping to raise awareness.”

Petition link at http://petitions.number10.gov.uk/sarcoidosisaware/

Over doing it,

2009-02-02T21:25:00.005-05:00

I know I'm not in the best of shape and sometimes I don't know how far I can take my body before it extracts revenge on me, BUT I try anyways. I love the outdoors and for the last two years I either felt I couldn't do anything or just didn't feel good enough to go out. This year I either feel better or am not scared anymore. Whatever the case is I over did it last Sunday when I hiked several miles in the snow in a north Jersey forest. I came home overly exhausted and had a tight chest (couldn't breath for several hours). In fact I couldn't even sleep from the breathing. For the next couple of days I was just spent. Sometimes it's worth it and sometimes it's not. All in All I consider myself lucky to even get out at all. The picture above is a paddle in the icy Passaic river I went on a couple of weeks ago. It's what cabin fever does to you I guess.

Can your doctor do this?

2009-01-23T07:39:00.003-05:00

Called my pulmonary specialist today to follow up with how I feel. I was getting home when he called me back and I realized that the other pulmonary specialist I went to when I couldn't see Dr. Tierstien had sent me a scribe to go get a ct scan. He recommended I get one every 6 months just like it says in all the text I have read about sarcoidosis. So Dr.T asked how I'm doing and my response was that I actually feel pretty good. My Lymph nodes are not running wild at the moment although the ones on my face never went down to normal size. I have energy and my breathing is OK. I proceeded to tell him that it's time for my ct scan it's been 6 months. He's like what ct scan? I said, "ct scan to see how I'm doing". He then started to tell me how unnecessary it is to do a scan like that when all he needs is an x ray. Doing a ct scan is the equivalent of doing 30 x rays!

I remember reading that most doctors can find sarcoidosis on an x ray because they are not looking for that. I also remember having x rays done in the hospital when I had my splenectomy and no one could tell my breathing problems were from all that cloudiness in the x rays. It just goes to show I really think I'm in good hands with Dr. T

Lets all be invisible

2009-01-15T20:03:00.002-05:00

OK, I remember watching the movie "The Fly" when I was a kid, I always thought about the possibility of breaking down every molecule of your body and transferring them in proper order from one pod to the other. I thought this might me possible one day. Well so far no word on that but they will have a "cloak of invisibility instead. If there is money and enough scientists out there to advance technology to the point where we become invisible then why cant we do something as simple as kill cells that are damaging other cells without killing the whole bunch. Or what about a safer way to control inflammation? Jeez I think I'm asking for too much here, what about the cure for the rhinovirus (common cold)?

Common now...

Science closing in on cloak of invisibility

Lessons from Half Cat

2009-01-14T18:28:00.002-05:00

This is an incredible story not only because it had me in tears but it teaches a great lesson for us sarckies. I'm not going to go into so I just posted the link to where TeeGee posted it. It's a must read I cant say no more!

Baby, the Cat is vibrating by The Gardner

Got my Snarkie Sarckie shirt!

2009-01-11T16:33:00.007-05:00

Here I am in my Snarkie Sarckie sarcoid Oh Crap! shirt.

I want to thank The Gardener for making these shirts a reality. We had rubber bracelets and pins before which is great but this is a wonderful upgrade in our spreading awareness toolbox.

Get yours here and be apart of this grassroots campaign in the fight against sarcoidosis.

http://www.cafepress.com/TeeGee

Rabid Barking Lymph nodes #63 & 64 by The Gardener

2009-01-06T20:45:00.002-05:00

Rabid barking lymph nodes # 63
Rabid barking lymph nodes # 64

Snarky Sarckie T shirts and Mugs by The Gardner

2009-01-04T08:55:00.003-05:00

My man The Gardner from the FRS forums put together a collection of T shirts and mugs so that we can now express ourselves with humor!

My favorite one is Sarcoidosis rhymes with, I feel like crap.

Snarky Sarckie T shirts and Mugs by The Gardner

Goodbye 2008 Hello 2009

2008-12-31T22:24:00.002-05:00

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

2008-12-31T18:40:00.003-05:00

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

Happy Holidays!

2008-12-24T16:27:00.001-05:00

How to get disability or what to do when turned down.

2008-12-19T17:04:00.002-05:00

Behold, courtesy of an online forum... the secret!

http://www.disabilitysecrets.com/

biopsies

2008-12-16T06:40:00.002-05:00

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

Dave

http://sarcoidosis.ning.com/forum/topics/biopsy-1

Comic Strip about sacoidosis

2008-12-06T18:32:00.003-05:00

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 50-58

Rabid Barking Lymph Nodes 47-50

Rabid Barking Lymph Nodes 36-46

Rabid Barking Lymph Nodes 28-35

Rabid Barking Lymph Nodes 24-27

Rabid Barking Lymph Nodes 9-23

Rabid Barking Lymph Nodes 5-8

Rabid Barking Lymph Nodes 1-4

Farewell Brooklynite

2008-12-03T20:22:00.002-05:00

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:

Claudia Corwin, Downtown legend, is dead

Happy Thanksgiving

2008-11-27T21:27:00.004-05:00

Just cause you have sarcoid doesn't mean you can't fry that turkey hard. Thanksgiving is a special holiday for me. Even though my Parents, uncles, aunts and grandparents are all from a foreign country the tradition remains all American. We truly embrace this holiday. To me it's just a great way to bring family and friends together. Sort of like Christmas only no gifts but better food. We had fried turkey once you do this fried you'll never have is any other way. Cranberry sauce, the Yam with the marshmallow casserole, Mashed potato, Corn on the cob, gravy, stuffing and wine lots of it. I'd thought I'd share something personal and cheery. Happy thanksgiving!

Nasal Blockage / Rocket snot

2008-11-27T08:21:00.003-05:00

Before actually getting diagnosed two years ago, I had what a buddy of mine called rocket snot. It's hard mucus buildup, it's bloody and plentiful. I had so much mucus I would vomit just clear phlegm usually after eating. This is gross but after waking up every morning I would have to remove the nightly build up with my fingers or any other means necessary it was enough to fill a measuring cup with hard mucus I could have probably turned them into a projectile of some sort. After taking prednisone it all went away. I forgot about it. that is until I came to ween off prednisone and my nose started to get stuffed again. This time with softer mucus and not bloody, just major blockage and inflammation. I tried saline solution, nasal cleaning kits, creams and everything else they had at the pharmacy. On really bad days I really need sleep. I take a shot of afrin nasal spray and it works miracles. I try not to use the afrin because it can really do more damage than good. I know a lot of sarcoids out there have the same problem and some have even resorted to surgery to solve the problem. I'm really not sure what to do this really sucks mostly because it interrupts my sleep. I wake up with a dry mouth and blocked nose.

Occupational Hazard, Postman with sarcoidosis

2008-11-24T20:21:00.002-05:00

Here is the smoking gun sarcoidosis researchers have been waiting for. Another case of someone somehow becoming sick at work.

Is dust killing the postman?

"Two studies in 1998 from the National Institute for Occupational Safety or NIOSH and Health, one in Tampa and one in an Omaha post office, reported no direct link between health concerns and postal dust. "

I guess they need people that are being funded to research sarcoidosis to go and conduct a study of those filters. That's part of the problem too, not enough funding.

This is important because the more these stories pop up the more attention, translate to more money for research and development of medicine and treatment.

I'm not comparing this disease to cancer or aids but this is how those diseases got progress in treatment over the years, example less women die of breast cancer than 5 years ago due to better and more efficient screening.

Watson 797!

2008-11-21T22:11:00.004-05:00

5 Mgs of prednisone is what the doctor recommended. I talk to my doc every two weeks to a month. I had a quick conversation with him yesterday and after telling him my energy levels are good but from time to time I get these pains in my abdomen, that I think are lymph nodes in there going a bit nuts. I had a scan in that area not do long ago and that's what it showed. You know the c scan will show in a bright white glow all inflamed areas so my scan looked like a damned Christmas tree. He brought me down from the 10 Mg's to 7 and now I'm down to 5 which is like really, really low. I didn't ask him because I figured he's weaning me off. We talked about it before and I believe if this time I still "act up" when I try to ween off the stuff all together then it's time to try methotrexate. I hope it doesn't some to that but something tells me it will. He doesn't want me to be on preds for ever due to the danger's of long term effects. My doc really has my trust he's earned it, he's really got a lot of credibility with me. So 5 mgs till next month...

Kveim-Siltzbach test

2008-11-20T19:45:00.003-05:00

I had this test performed at Mt Sinai Medical center where the test was developed, it was not covered by my insurance and the test was optional. The doctor sticks a needle somewhere right under your skin. Similar to a TB test. A few weeks later, if something manifests itself on the site it is biopsied and can be definitively diagnosed sarcoidosis.

This is the biggest problem with this disease and others that lack funding. There are no standardize testings to confirm diagnoses and no screenings. I bet there are so many more people out there with sarcoids and even died from it and never got diagnosed. Hopefully further studies will produce a more standardized testing for diagnoses of sarcoidosis. Right now the Kveim test if positive, a definitive diagnoses but if negative it doesn't mean you don't have sarcoidosis

This Wiki article does a really good job at explaining the pathology side look at the pictures titled Necrosis in granulomas

Also try this article The Kveim-Siltzbach Test

Auto immune disease Bill HR 7078

2008-11-17T19:37:00.003-05:00

Back on October 4th I wrote about the bill introduced by Patrick Kennedy that would allow more finding for research on auto immune diseases. I wrote my congressman asking for his support on this bill and, Well he wrote back...

Dear Mr. Rojo:

Thank you for sharing with me your personal experience
with autoimmune diseases and for contacting me in support of
H.R. 7078, the Prevention, Awareness, and Research of
Autoimmune Diseases Act of 2008. I appreciate hearing from you
and I welcome the opportunity to respond.

Like you, I believe that we must join together in the fight
against autoimmune diseases by supporting programs that increase
public awareness and research initiatives that focus on early
detection and treatment. Autoimmune diseases affect as many as
23.5 million Americans and encompass more than 100 interrelated
diseases, including lupus, multiple sclerosis, rheumatoid arthritis,
Sjogren's syndrome, polymyositis, pemphigus, myasthenia gravis,
Wegener's granulomatosis, psoriasis, celiac disease, autoimmune
platelet disorders, scleroderma, alopecia areata, vitiligo,
autoimmune thyroid disease, and sarcoidosis. According to the
National Institutes of Health (NIH), autoimmune diseases are
collectively one of the top 10 leading causes of death in women
under age 65 and account for at least $100 billion in annual direct
health care costs.

You may be pleased to learn that I am a strong supporter of
H.R. 7078, which was introduced by Congressman Patrick
Kennedy (D-RI) on September 25, 2008. If enacted, this legislation
would support public awareness initiatives, as well as efforts to
increase rates of early detection of certain autoimmune diseases.
Specifically, this legislation would focus on minority communities
that may be underserved or disproportionately affected by
autoimmune diseases. H.R. 7078 would call for research on
environmental triggers of these diseases, such as heavy metals,
phthalates, and pharmaceuticals, some of which are known to
"trigger" the initiation of autoimmune disease in genetically
predisposed individuals. Finally, this legislation would authorize
grants and institute a loan repayment program to support the
education of health care providers on potential links between
autoimmune diseases and cognitive and mood disorders, such as
depression. This legislation is currently pending before the House
Committee on Energy and Commerce. Please be assured that I will
keep our shared support for increased public awareness and
research of autoimmune diseases very much in mind as Congress
considers health issues.

Thank you again for contacting me. As your
Representative in the United States Congress, it is a privilege and
an honor to serve you and to act as your voice in Washington.
Please feel free to contact me again with any other issue or matter
that concerns you. You may also want to visit my website at
www.house.gov/rothman where you can find out how I have voted
on legislation, learn which bills I have introduced and
cosponsored, and keep current with my latest Congressional
activities and policy statements.

Sincerely,

Steven R. Rothman
Member of Congress

It's sort of a generic letter that I'm sure you can reuse to whoever inquired about his thoughts on the bill but I'll take it!

here is the letter I originally sent him in Oct

Oct 4 post

Officer Down

2008-11-13T22:37:00.004-05:00

As I search the new I find information on sarcoidosis cases and came across this one from last year of Police Officer James J. Godbee of the NYPD. My condolences goes out to his family as I can only imagine how hard this is for them. He he goes off to lend a hand in the rescue efforts after the 9/11 attacks in ground zero and he ends up with sarcoidosis. What they are writing is that he somehow got sarcoids after breathing in toxins from the site. He then has a heart attack 3 years later cause by complications from sarcoidosis. The family believes that he should be included among the death cause by the attacks and in essence they are right because had it not been for the attacks he would probably be on the job still today. I think this is a big smoking gun and I keep writing about the 9/11 connections to sarcoids. This is an opportunity being pass on because something in that toxic mix of dangerous dust cased sarcoidosis is many people some acute, some chronic. If we can find some sort of trigger then that would put scientists on the right path to find better treatment or perhaps even a cure.

About Police Officer James J. Godbee

NYPD memorial page

Famous people with sarcoidosis Updated

2008-11-13T19:18:00.009-05:00

Ok, I know this has been done before but I got a few new names that I wasn't aware of previously.

Bernie Mac Comedian and actor

Karen Duffy Former MTV V jay and Revlon Model

Bill Russell Basketball legend

Reggie White Football great

Van Ludwig Beethoven Music composer
Tisha Campbell-Martin Actress (remember her from the show Martin)
Evander Hollyfield Boxing legend, very little info out there to support this one

Angie Stone Singer

Travis Michael Holder Actor, playwright and reviewer in the LA theatre scene

only a few of these are actually confirmed

Anyone know of any more, holla!

Here is a new one,

Floyd Mayweather Sr. Boxer, Boxer trainer, father of boxer Floyd Mayweather Jr.

William Shakespeare is thought to have had sarcoidosis but it's not yet proven

Beethoven What did you say?

2008-11-07T23:01:00.005-05:00

It's pretty inspiring to think of people who had to overcome major obstacles in order to achieve their objections. Beethoven although deaf composed some of the most comprehensive melodically music known to mankind. Did the fact that he suffered from a systematic disease help him become successful? It is said the after Post diagnoses some doctors thought he has suffered from Sarcoidosis. If it's true I think it shows the level of accomplishment one can have while dealing with a chronic disease.

He is on of the articles supporting Beethoven having sarcoidosis

Otolaryngologic Manifestations of Sarcoidosis

Makes you think really and I wonder how many people died of this disease and not even know or having been misdiagnosed.

relating to this and why I ask if it sarc made him become successful is because it's my personal belief that the more you struggle the more prepared you are to go through walls to accomplish things.

There is a saying by Cuban poet and nationalist leader Jose Marti.

"Man needs to suffer. When he does not have real griefs he creates them. Griefs purify and prepare him."

These words to me ring true. At first it seems like nonsense but when you really think about it it applies to a lot of cases and to sarcoid sufferers and not limited to sarcoid sufferers but what about cancer survivors? Those people I look up to.

Soul man on an oxygen tank

2008-11-05T20:16:00.002-05:00

All the articles I have read up until now have said the Bernie Mac's sarcoidosis has been in remission. Look at what it says here, "Mac had an oxygen tank on set, to assist him with his sarcoidosis (a chronic tissue inflammation of the lungs), he would often joke around with the cast."

Here is the article

“Soul Men” Honors Mac, Hayes

Why was this not know before?

A Salute to Fangoria!

2008-11-05T19:57:00.002-05:00

The folks over at Fangoria magazine are auctioning off unique props from the movie "Soul Men". Proceeds will Benefit the Entertainment Industry Foundation and The Bernie Mac Foundation which is his foundation to benefit sarcoidosis. BERNIE MAC FOUNDATION

I really applaud Fangoria for their efforts and it's a great way to create awareness.

I still love horror movies but not as much as I did when I was a kid. I limit my horror movies now to zombie flicks. I pretty much grew up on Fangoria magazine. Read the article here Tis the season… PREMIERE PROPS special holiday auction extravaganza

How to deal with a Plaquenil Headache

2008-11-02T05:24:00.002-05:00

I'm off the Hydroxchloroquine (plaquenil) now but when I started it I was told the side effects were minimal. I guess what my doc meant to say was that the side effects from plaquenil were not as dangerous as those of prednisone. When I started on the plaquenil the 2 side effects I had to deal with were gas, I farted like a madman. The whole house smelled like ass. Every time I would fart my wife would look at me, I'd be like it's the pills making me do this honey. The other was the terrible tension headaches you know the kind that starts on your shoulder and neck. Advil. Aspirin and Tylenol didn't work. I called my cousin who is a hot shot pharmacist in some university in Cali. His advice to me was to drink lot of caffeine in the morning with my aspirin or Tylenol. Or just take Excedrin because essentially that's what Excedrin was acetaminophen (Tylenol), aspirin, and caffeine. Well with 2 cups of coffee and a Tylenol I was able to sleep again and eventually the headaches and the gas went away after 2 months.

SARCOID IN THE NEWS - Sarcoidosis hits in midlife, has long-lasting effects

2008-10-28T17:33:00.003-04:00

You know It's great this is in the news as often as it is. I'm actually quite surprised at how many recent articles I have been finding. This is is from my hometown newspaper, The Star Ledger, Newark, NJ edition. I believe it's from a doctor in Hackensack University Medical Center. A Dr. R. Knight Steel. It's the only name on the article so I guess it's his.

Sarcoidosis hits in midlife, has long-lasting effects
Tuesday, October 28, 2008
MANY CHRONIC CONDITIONS begin in midlife or shortly before, and impact an individual's well being to a varying degree for half a century. One such condition is sarcoidosis, which often makes its initial appearance around age 40.

A person with this condition may experience a single chronic symptom, often shortness of breath, which compels that individual to seek medical attention. Other people become aware of enlarged nodes, often mildly tender, in the neck or under the arms. Still others discover little red bumps often on the shins or red spots frequently on the face. Difficulty with vision, an irregular heart beat, painful joints, an enlargement of the salivary glands under the cheeks, abdominal pain or just a sense of fatigue also may be occur.

An individual may experience different symptoms at different times in life. The symptoms may even be so mild that the person does not seek out medical attention and is not even aware of the fact that he has the disease.

Most people with sarcoidosis have an abnormal chest X-ray. Quite often, the serum level of calcium is elevated and there may be an abnormality of one of the tests of liver function. Because the lung often is the major site of involvement, a lung biopsy or a lung washing by means of a bronchoscopic examination may be needed to make the diagnosis. At other times, a biopsy of a lymph node or another organ may be utilized to confirm the diagnosis.

Although the cause of this disease is unknown, there is evidence that an abnormal immunological response to some allergen is responsible. This produces little lumps, known as granulomas, that initially are visible only under the microscope, but which may become large enough at a later time to be felt or seen.

A corticosteroid, prednisone, is the usual treatment. It often is prescribed intermittently and in varying dosages. Elders who have had sarcoidosis for years or decades may experience a flare-up in one or more organs, especially the lungs, that requires treatment with this drug. Other drugs may be used especially if the individual has significant side effects from the prednisone or the disease is particularly active.

Sometimes, an entirely new symptom will make its appearance late in life, reflecting the involvement of a different organ with sarcoidosis. For example, some elders may have an acute visual problem that requires an assessment by an ophthalmologist and treatment targeted to disease in the eyes. Other elders with this condition may need urgent attention because the disease has involved the central or peripheral nervous system.

Elders who have one or more chronic diseases always should notify every medical specialist visited for any reason about these conditions. Especially when the chronic condition, such as sarcoidosis, has so many very different symptoms, every physician will want to consider it when trying to diagnose and treat a new medical problem.

Write to Dr. R. Knight Steel at Hackensack University Medical Center, 30 Prospect Ave., Hackensack, N.J. 07601.

SARCOID IN THE NEWS - Real Heart Burn

2008-10-27T21:10:00.002-04:00

"MIAMI -- When a south Florida woman was stricken with the same condition that killed comedian Bernie Mac, a special kind of heart "burn" ended up saving her life."

Wow, straight and to the point! Interesting article though because most articles I find are about the lungs this one is about, can you guess? Your right, the heart.

Real Heart Burn

SARCOID IN THE NEWS - HABC hit with mold verdict

2008-10-27T20:45:00.001-04:00

The Daily record in Baltimore City, Maryland reported that mold will make your sarcoidosis worst. I think it's safe to say that mold is bad and will probably damage healthy people's lungs. The only thing this article is good for is the mention of the disease itself.

"The Housing Authority of Baltimore City must pay more than $300,000 to a former tenant whose lung condition was made worse by the presence of hazardous mold in her home.

A jury in Baltimore City Circuit Court deliberated for three hours Monday before awarding Nornita Hyman $3,384 in rental expenses and $300,000 for pain and suffering.

Hyman, 48, lived in the Mount Winans community in South Baltimore between 1999 and May 2006. Mold exacerbated her sarcoidosis, requiring five hospital stays between 2004 and April 2006, said her lawyer, Scott E. Nevin of the Law Offices of Peter T. Nicholl. She moved out at the recommendation of a consulting pulmonologist, who diagnosed her with hypersensitivity pneumonitis, Nevin said."

HABC hit with mold verdict

Sarcoidosis in Vermont

2008-10-26T12:19:00.005-04:00

Here is another story that shows possible links between sarcoidosis, breathing in contaminated areas possibly asbestos or other dusts.

"For a period of seven months, state employees were required to work under conditions which were recognized as unhealthy," Costello said. "The present condition of this building is a consequence of the failure of this administration to maintain its infrastructure."

"State workers are now housed in modular offices on the grounds of the complex. They were moved out of the office building after six workers were diagnosed with the rare disease sarcoidosis, and many more complained of respiratory ailments."

It's amazing how we send people to work under these conditions. Even though I already have sarcoidosis I still wear a mask when doing anything that might involve dust or breathing in hazardous chemicals. It should probably start at a young age I remember in 5th grade shop class we used to wear goggles for safety but we probably should have been wearing a dust mask as well. I'm not saying you get sarcoidosis from cutting wood although some scientists have tried to link southern pine trees as one cause for sarcoidosis but just as a precaution I mean why are we breathing in wood dust anyway. Cant be good. I got off topic didn't I? Well here is the article

Employees on attack over sick building

UPDATE stupid cough

2008-10-26T11:51:00.003-04:00

I started to get this cheep cough like when you kind of skip cough. It's hard to explain but this used to happen to me last year where I would talk but cough would come out instead. My breathing is a little funky and I' m slightly out of breath. Nothing to get worried about yet but it's definitely the start of something. It's been 2 weeks and it's time to call the doctor again. I'm on 7.5 mgs of prednisone and weening. I think he wants to go to methotrexate next.

A public announcement

2008-10-23T19:54:00.003-04:00

I wish there were more of these perhaps Bernie Mac could have done one. Maybe Karen Duffy could do one as well?

Thank you FSR for this one.

SARCOID IN THE NEWS - Healing fest helps Jackson woman battle illness

2008-10-22T22:07:00.004-04:00

I just love it when sarcoidosis is mentioned in the media. I love it because it creates much needed awareness to a disease that is not so rare.

from Jackson Mississippi WLBT3 news reports 10/12/08

Healing fest helps Jackson woman battle illness

Another 9/11 connection

2008-10-22T21:30:00.002-04:00

There has to be a real connection between sarcoidosis and what was in the air after the 9/11 attacks. We know that there was a spike in sarcoids cases in the area after the attacks. We know that there was asbestos, lead, glass, cement and who knows what else. My infatuation with this lies in the hope that researchers will get a better understanding of this disease.

Here is a really interesting article on the BBC web

Dust victim is added to 9/11 toll

Life is not all Sarcoids

2008-10-20T07:55:00.004-04:00

With the blog and the other support forums, all the doctor appointments the pills and side effects. One might think that sarcoids consumes my life. I was thinking about it this morning with sun and my face and all. Sarcoids for me is just a reminder that life cannot be wasted. Everytime I feel good enough to mow the lawn or something like that I take solace in the fact that I'm healthy enough to do it because just a few years ago I didn't see myself doing anything really. I was about to sell my kayak because I thought I was never going to have the energy to use it again. Well here I am and there is sarc, a great reminder of not to take anything for granted including my lungs. Now if I could only control my mood swings while on these pills!

Weight gain on prednisone

2008-10-15T20:13:00.004-04:00

I was on prednisone for approximately 18 months and in that time I gained 35 lbs. I kept a low fat and low salt diet. I figured the salt would help me retain less water and the low fat well, you know. I got those ideas from a book called "coping with prednisone" by Eugenia Zukerman and, Julie R. Ingelfinger.

My wife brought home a pedometer that was a promotional item where she works and it involved the show, the biggest loser. So I read the info and said, "what the hey" It said if you walked the recommended 10k steps a day it was the equivalent of going to the gym for 30min, 3 times a week. That's pretty good for just walking. Here's the best part for me. I do over 10k on a regular work day because my job has me walking around a lot. So now by setting myself a goal of 15k It might just do me good huh? I also got some jump ropes and that idea i attribute to my brother Jorge I remember he used to stay in shape by doing boxer's style training. Which is why I asked my wife for a heavy bad, a pair of boxing gloves and a timer so I can go a few round in my garage. I figured this would not only be good exercise but a good stress reliever as well? I'll let you know how it all works out. One thing for sure it's hard to avoid weight gain but I think I was lucky I only gained 35. Now I just hope to lose it. As I post this I weight 248lbs, 5 pounds less than 2 weeks ago.

ROID RAGE!

2008-10-09T19:26:00.004-04:00

I know one of the side effects of prednisone is mood swings. I didn't really notice this in the first year I took it but now that I have been off of steroids for awhile and came back on it I notice my fuse is very short. I was at the doctor's office today waiting to get my flu show. My appointment is at 5:30 and it's 6:30 and they haven't called me yet. I know when I asked to be rescheduled I was being rude and I'm already not too fond of this receptionist from previous encounters. I get to my car and I wanted to rip the steering wheel off. I get home and I take it out on my wife by being asked to be alone. As I'm writing this my head literally feels hot along with my ears. I did not have this kind of reaction when I was off but looking back this kind of rage was pretty normal while I was taking prednisone last year. I don't know how my wife put up with it.

9/11 World Trade Center and the sarcoid connection

2008-10-09T19:18:00.003-04:00

It it unbelievable how many people involved in the rescue and clean up efforts were diagnosed with sarcoidosis in the time after the 9/11 attacks in the WTC area.

This is a link of the PBA website that highlights all of the people that got sick working on the site. Look how many with sarcoidosis.

http://www.nycpba.org/wtc/registry.html

I called the PBA in NY and spoke with the person who compiled the list and yes the list is mostly police officers or detectives, there are some civilians on there and one firefighter. The Fire dept has their own list.

M doctor in works out of the Mt Sinai and he is the one that told me there was a spike in sarcoids cases as a result of world trade center rescue working the site. I thought it was interesting because this might support evidence that sarc may be environmental. Not to say it isn't passed in the genes or to debunk any other theory because there could be more than one.

Check out this link as well, I believe it was written by a sarcoid patient being treated by Dr. Teirstein

So the good news is, you have sarcoidosis, Now what?

Mount Sinai Hospital New York

2008-10-09T18:58:00.003-04:00

FYI...

If you have sarcoidosis and Live within the proximity GO HERE!

Mt Sinai Medical center is a teaching hospital that has a staff of pulmonary specialists with extensive sarcoidosis experience. Among them are Dr. Maria Padilla and Dr. Alvin Teirstein.

I am treated by the latter. The hospital has been considered for a long time now a research center for sarcoidosis in fact the Kveim-Siltzbach test was developed here by Dr. Louis siltzbach with research done by Dr. Morten Ansgar Kveim, a Norwegian dermatologist and It is the only test that, if positive, is considered to be true diagnostic of sarcoidosis.

One thing I hear a lot of sarkos complain about is that their doctor is clueless and they get sent from one doc to the other resulting in wasted time and you still feel like crap. If you do not live in NY or close to here. Then here is a list of Sarcoidosis doctors and centers around the world

World Wide directory of Sarcoidosis experts

Prednisone, The wonder drug

2008-10-08T21:14:00.003-04:00

Everyone reacts soooo differently to this drug so when one person says he or she feels this way someone else says yeah but I feel like that plus a little of this. The way this drug affects me is as followed:

I get fat, or at least my appetite opens up it's hard to control so I have to go on a diet while I'm on. I gained at least 35 lbs last year.

I got some acne (on my back)

I am usually full of energy but I can also get aggressive at times. Not like roid rage but just like me but more intense me, people who know me go ohhhh.

Brain fog I'm not sure if this is the drug or the disease.

That's really it for me. I like most people enjoy having the extra energy or normal energy that is not achieved otherwise really.

The other day I got rid of a bunch of "honey dos" that have been left half done for months. I like having this kind of energy. However it's a double edge sword because I could also end up with no bone mass one day. Next stop Methotrexate.

New Legislation for Autoimmune Diseases

2008-10-04T09:19:00.004-04:00

Patrick Kennedy introduced H.R. 7078. A bill that would help bring much needed attention to funding research and awareness for auto immune diseases.

You would think with a war going on and the economy in shambles, not to mention it's an election year a bill like this would be over looked in congress. I hope that is not the case and I applaud Congressman Patrick Kennedy of Rhode Island for this and I will email my congress person about how important this bill is so he can support it as well. With proper funding we will get closer to the day that there will be standard testings for these diseases and the development of better treatment or perhaps even a cure.

With that I leave you this article New Legislation for Autoimmune Disease Applauded

here is a directory of congress representative that you can email to express your concern for this bill CONGRESS

House

2008-10-03T23:23:00.006-04:00

One of my favorite shows is House and I love the way sarcoidosis is mentioned repeatedly.

I also really like this picture I found on this website

http://itsnotlup.us/

house fans get it right?

Gilbert Barr

2008-10-03T17:35:00.007-04:00

Me & Sarcoidosis A lifetime partnership by: Gilbert Barr Jr. written in 2002

The first of the few books I have every read about sarcoidosis was this one by Gilbert Barr. Depending on how you look at things you might either find this book really negative, depressing and downright horrible because of the things he went through. I think this book helped me cope with this disease better. He wrote this book from a patients perspective which includes insight to his medication doctor's visit, good and bad. He had sarcoidosis in multiple organs and aside from having to suffer from all the symptoms he had to suffer the ignorance and sometimes disrespectful health care workers or doctors he would encounter throughout his life. It's true though I consider myself very luck because for a couple of months I experience what it was like going to doctors that don't know enough about the disease that they don't even know what to do with you so they keep shifting you around from specialist to specialist. Gilbert not only suffers from sarcoidosis but also from diabetes insipidus. One thing Gilbert stresses in his book for sure is how important it is to have a standard test to confirm sarcoidosis or better ways of getting to the diagnosis faster as it takes some people years to find out what is wrong with them. I have a lot of respect for Gilbert because he let it all hang in this book he didn't hold back because he wanted to put himself out there for those of us to realize that we are not alone. One saying he lives by is "no matter how bad you have it, it could be worst!"

I was in his website http://www.gilbertbarrjr.com/ the other day and was saddened
to read that he is currently undergoing treatment for colon cancer that has spread to his liver. It's sad but fortunately this is not the way it is for most of us. remember, no matter how bad you have it, it could be worst.

R.I.P. Bernie Mac

2008-10-03T07:31:00.006-04:00

I know it's older news but how can there be a blog about sarcoidosis and not a mention of one of the few famous people who have it. Or that we know of at least. When He first died I was angry because they kept saying he died of "pneumonia" and the media or his family kept emphasizing that is was not the sarc. We know that the death rate with sarc is really low. This disease doesn't kill us as much as it makes us feel like crap everyday. But had the pneumonia hit a 50 year old man as hard as it hit Bernie if he had not had complications in his lungs to begin with? I don't know because Bernie's life with sarcoidosis was downplayed and understandably so. What about Reggie White? He had sarc in his heart and lungs. The man died from cardiac arrhythmia and they think his sleep apnea may have cause it?
I'm not saying there is a conspiracy but perhaps such a lack of knowledge for sarcoidosis may be to blame.
I always looked up to Bernie Mac as someone who could reach high levels of success with sarcoidosis, so for that I say Thanks, Bernie!

This is a really great article written about Bernie after his death, Bernie Mac's death puts sarcoidosis in spotlight By Judith Graham | Chicago Tribune reporter

Book Review: Karen Duffy's "Model Patient"

2008-10-02T23:22:00.005-04:00

Model Patient , My Life As an Incurable Wise-Ass

Karen Duffy suffers from Neuro Sarcoidosis, it involves her brain and central nervous system. She tells her life's story and she does it while laughing at herself and in the face of this disease. She is upbeat has a great attitude and a great sense of humor. I really liked this book because it made me realize that we can't be serious all the time it's just not good for us. She really is an inspiration because she is juggling from job to job, while dealing with this disease which I have to say, her condition was beyond what I could have ever imagined. In other words I got it good compared to her. Even if you don't have SARC I recommend this book because the book is not all about SARC. It's about putting yourself in a position that no matter what you won't feel sorry for yourself and at the same time be able to accept help from other's.

Great book I hope she writes more.

My Story...

2008-10-02T22:23:00.009-04:00

My name is David I'm 31 and I moved to Teaneck, New Jersey from Miami in the spring of 2006. I was under enormous stress from the move and I wonder if that stress is what caused or triggered me getting sick? I got a head flu the 2nd week I got here then it came back stronger, I wasn't eating had fevers of 104. I saw a family Doctor who told me it was pneumonia and sent me on my way with antibiotics. I thought I was fine but 3 weeks later I got sick again, all this time I was losing weight and having unexplained fevers throwing up mucus and by now a pain in my abdomen on the left side had developed which my family doctor told me was "water in my lungs" never mind no x-ray was taken yet. I didn't have insurance but I had just started a new job that would provide it within 90 days.
That’s when I saw a real Doctor who checked EVERYTHING! She thought I was on drugs, cocaine particularly because I came in with irregular heartbeat, bloody mucus and fever. All the symptoms pointed towards lymphoma so I was sent to go see an oncologist. The oncologist ran plenty of tests, which included bone marrow biopsy that came back negative for cancer. However we did not have explanations for what has been going on with me. I was 310 lbs and I was losing weight at an alarming speed. Cat scans revealed that the pain in abdomen was an enlarged spleen (no really it weight 9.5lbs) which seemed not to be receiving enough blood. By this time I had lost 90lbs I couldn't breathe, I thought I was going to have a heart attack going up a few flights of stairs. Fatigue was my biggest complain though. There were days I couldn't even walk one to two steps without being out of breath. After consulting a few surgeons/ a cancer specialist surgeon decided to remove it. After the splenectomy they performed a biopsy on the spleen, they found masses of granulomas. (No Cancer!)

I went to see a rheumatologist who suggested we take the "wait and see" approach. Now here I am looking on the Internet and stats are showing like 90% of people with sarcoidosis have it in their lungs! No one even bothered to check mine even though one of my first symptoms was that I was out of breath. Needless to say I did not go back to that doctor. I found a doctor in New York's Mt Sinai Medical center that has a team of Pulmonologist that specialize in sarcoidosis! HA! So...

I was prescribed prednisone for about 18 months, this worked and put the sarc down but the minute I tried weaning off that sucker came back. I had also gained about 35 lbs back with the steroids and don't even mention the mood swings to my wife. Throughout the steroid treatment I had flared up more times than they raised taxes in Jersey. I was put on a drug called hydroxychloroquine generally known as plaquenil. This is an old drug used to treat or prevent malaria. The way it works for auto immune disease is not fully known but what is known is that it helps with inflammation and people taking it for malaria that had rheumatoid conditions started to realize that the drug improved their arthritis. The doctor said last week that this drug wasn't working so we are looking at other options. The Doctor put me back on the prednisone to get rid of the symptoms I currently have, which includes gigantic lymph nodes exploding at both sides of my face. Oh that's another thing the last 2 years I have had lymph node biopsies to rule out the C word. I just had a needle biopsy on the face a couple of weeks ago. So next week the doctor will tell me if I have to go on methotrexate. That is a drug used for the treatment of cancer but it will be given to me in low dosage.

I'm probably missing a lot of what happened on here like when I had to take a bunch of really strong pain meds for some crazy looking skin ulcer (I have pictures) on my tailbone. As a result of being in the same position for too long in the hospital bed after the splenectomy. These were the pills I was prescribed after the surgery, which didn't hurt as much as that ulcer. Or maybe the ulcer took my mind off of the surgery pain? Whatever, Now these pills had backed up my digestive system for almost a week I thought I was going to pull an "Elvis" one day in the bathroom.

This is my story I wish it wasn't but it's mine and that's ok. I gotta say some good things did come of this and I think it gave me some sort of push I guess to try and be better. It brought my family together as well. I know I loved having my mom fly up from Miami and "take care of me" after the surgery while my wife was at work. I got visits all 5 days I was in the hospital. I used to stay up just me and my morphine drip watching three's company and good times. Good times was sooo depressing though.

I'll update next week if I go on the methotrexate for now the steroids are working in getting my head in normal proportions. For now it's just me and my stage 4 sarcoidosis!

But you don't look sick...

2008-10-02T19:55:00.003-04:00

Don't you hate it when people tell you that?

Why Blog about sarcoidosis

2008-10-02T19:24:00.001-04:00

This blog can be used as a platform for ranting, crying, laughing at yourself or me for that matter. Pretty much whatever you want. If you have sarcoidosis or knows someone maybe even is a caretaker your welcomed to read, comment and share on this blog. Most of my friends and associates know about my disease but since "I don't look sick" it goes unnoticed and yet it's a big part of your life. It's like a tree is growing out of your head and only you can see it. Sometimes I actually feel like a tree but it goes unnoticed. In some ways it's good because I get less questions and people at work wont assume I can't get something done. However it's downside is that no one really knows what you go through but another sarcko. So this is why this blog is called sarcoidosis United. One thing for sure is that there is no feeling sorry for yourself here. I'm not exactly proud of my disease and believe me I wish I weren't sick but this has certainly changed me in ways I wouldn't even have imagined. I don't take as many things for granted like I used to. I don't sweat the small stuff as much as I used to. Ok if my wife reads this she'll call me out, but no, for real. So far I feel really lucky what can I say. Well I can say I like hanging out with other sarcko's because you folks know how I feel.

What is Sarcoidosis

2008-10-02T06:24:00.001-04:00

Sarcoidosis is a not so rare autoimmune disease that can affect any soft tissue in your body. It's a disease that can affect multiple organs such as lungs, lymph nodes, heart, eyes, spleen, the brain and even the skin. There is also neurosarcoidosis which affects brain and the central nervous system. Sarcoidosis consists of inflammation that forms of tiny lumps in your organs called granuloma. These bind together to create a region of granulomas that can affect the way the organ works or just render it useless. About 90% of cases have lung involvement. A hospital in NYC states that 80% of Sarcoidosis cases require no treatment and it may go away in 6 months to 2 years. About 40-60% of patients Sarcoidosis goes away without any treatment in fact a lot of people may get it without knowing and not report it so this number may even be higher. About 20-30% of patients are treated and it goes away. The other 20 or 30% are chronic cases. Sarcoidosis is rarely fatal. Some of the symptoms can include, fever, night sweats, cough, shortness of breath, fatigue (that’s a big one) and joint pain.
All in all, sarcoidosis is no fun but a good portion of people affected can lead a normal life. Research and development for this disease has made advancements in recent years and there are clinical trials taking place that offer hope. Corticosteroid, are the most common medicine prescribed for sarcoidosis the most popular being prednisone. Prednisone is designed to suppress your immune system so that is doesn’t overreact hence auto immune, and help with inflammation. There are other drugs as well such as hydroxycloroquine and methotrexate and others.
There is really no way to predict the outcome for each individual I can say is that the best way to deal with it is to find out everything you can about sarcoidosis and your condition so that you can then ask the right questions and advocate your own health. Oh and a really good doctor doesn’t hurt either.

Sarcoidosis United

The Bernie Mac Foundation

Get your TeeGee sarcoidosis awareness shirts here!

RIP Gene P. I. Duffy

Sarcoid free 2 years now

Jazz for a Cure

John Hopkins finds new lead that may bring us closer to a cure.

A CENTURY-OLD PUZZLE COMES TOGETHER: SCIENTISTS ID POTENTIAL PROTEIN TRIGGER IN LUNG DISEASE SARCOIDOSIS

Hike for Lung Health - Team Sarcoidosis

Appreciate the little things

NYC Judge Dies from complications of sarcoidosis (Lungs)

Charles P. Sifton, Judge in City Case on Term Limits, Dies at 74

R.I.P. Steve L. Jefferson

Mayweather's "Rare Lung Disease"

Paranoid?

86

Circle of Sacr

7 months sarcoid free

A fellow sarkie passed away today...

Fox 5 news Interview with Kim Grant Sarcoidosis Patient

Sarcoidosis Awareness Society SAS

Life Sarcoid Free

9/11 victim dies from dust exposures?

Weaverville Fire Chief Richard Smith

British Petition

Something to write about

Happy St Paddy!

News from the OSU Medical Center

Week 1

Day 4

Day 2

Day 1

Prednisone free (for now)

Another trip to the emergency room

Crap for a Cure!

Sarc sufferers dealing with other illnesses

UK sarcoidosis awareness petitions *UPDATE* NOW AT 564 Signatures!

Over doing it,

Can your doctor do this?

Lets all be invisible

Lessons from Half Cat

Got my Snarkie Sarckie shirt!

Rabid Barking Lymph nodes #63 & 64 by The Gardener

Snarky Sarckie T shirts and Mugs by The Gardner

Goodbye 2008 Hello 2009

Never feel sorry for yourself

Happy Holidays!

How to get disability or what to do when turned down.

biopsies

Comic Strip about sacoidosis

Farewell Brooklynite

Happy Thanksgiving

Nasal Blockage / Rocket snot

Occupational Hazard, Postman with sarcoidosis

Watson 797!

Kveim-Siltzbach test

Auto immune disease Bill HR 7078

Officer Down

Famous people with sarcoidosis *Updated*

Beethoven What did you say?

Soul man on an oxygen tank

A Salute to Fangoria!

How to deal with a Plaquenil Headache

SARCOID IN THE NEWS - Sarcoidosis hits in midlife, has long-lasting effects

SARCOID IN THE NEWS - Real Heart Burn

SARCOID IN THE NEWS - HABC hit with mold verdict

Sarcoidosis in Vermont

*UPDATE* stupid cough

A public announcement

SARCOID IN THE NEWS - Healing fest helps Jackson woman battle illness

Another 9/11 connection

Life is not all Sarcoids

Weight gain on prednisone

ROID RAGE!

9/11 World Trade Center and the sarcoid connection

Mount Sinai Hospital New York

Prednisone, The wonder drug

New Legislation for Autoimmune Diseases

House

Gilbert Barr

UK sarcoidosis awareness petitions UPDATE NOW AT 564 Signatures!

Famous people with sarcoidosis Updated

UPDATE stupid cough