So, pathology report came back and confirmed granulomas in my sinuses. After what I thought was 7 years in remission. Could be I had it all along but this week I'm experiencing the flare ups that I had back then. Mt Sinai can't see me till Nov 1st so I'm going to a local rheumatologist to see if he can start me on Predinsone until I can see them in Nov. They are also going to call me Monday to see if they can squeeze me in due to flare up. that's the game plan! 
In 2007-2010 I had it in my spleen (removed) and lungs. I already had my lungs checked in Mt Sinai 2 months ago and it doesn't seem to be active there. My ENT has seen sarcoid before and is concerned that it may cross over to my brain. Not sure the validity in that but well see.

Suspected Sarcoidosis comeback update

Had me some sinus surgery because since i moved to NJ from Miami I have been suffering from major sinus issues 4-6 times a year.
began to see an ENT that from the moment she found out I had a history of Sarcoidosis she began telling me that she sees granulomas in my sinuses.

this was 2016 after a year of hearing this bullshit I got tired and started to see a new ENT that said the same thing. He's the one that ordered the ACE test.

next steps:
Pathology report from all the crap the obtained from my nose.

7 Years in "Remission" and it's back?

When reading and researching sarcoidosis back in 2008-2010 my findings were that a good percentage of people who suffer from sarcoidosis go into remission after about 2 years. A very small percentage ever had it returned or that it was highly unlikely after having it for the short bout that sarcoid would return. I'll mention that those outside of this suffer from sarcoidosis their whole lives.

I have been having nasal and sinus issues that were thought to have stemmed from my allergies for the last 5 years or so. They have been getting worst. I changed ENT doctor and this new lady upon learning about my history with sarcoids was convinced that's what was going on again. She urged me to see a pulmonologist and to get an ACE test to see where my levels are.

I saw her for about a year and change before I started to get sick of hearing it was sarcoids. She even went ahead and said, "if it looks like a duck and quacks like one then it's probably a duck" I felt that this was an easy way out and it would be harder to find the real reason for my sinus issues.

This really pissed me off and I sought out another doctor. Saw him for the first time a month ago and he also took the sarcoid route claiming he saw granulomas in my nose. He ordered an ACE test which today i find the results. My ACE levels are at 74.

ACE stands for Angiotensin Converting Enzyme and converts angiotensin 1 to angiotensin 2.

typical ace level in the blood is 8 to 53. Usually in a sarcoid patient the level is on the high side. In my case the test came back 74.

Usually high is an indicator that the disease is active but as I have said before there is no definitive diagnosis for sarcoidsosis and it's a sort process of elimination.

either way stay tuned new adventures to come. Please feel free to comment on your ace levels and experience.

Sarcoidosis in 2012

Not sure where sarcoidosis is in 2012 as far as research and delopement for treatment goes but I can say I have noticed 2 things. An increase in traffic on this blog and a ton of more blogs. Both are great because it can only mean increased awareness. At first I thought it meant more people with sarc but then this brain of mine got a volt of smartness that brought me to the conclusion people dealing with this horrid disease have always been around it's just that they are talking about it more.

Bernie Mac Speaking about Sarcoidosis in a Radio Interview 2009

I never came across this till now but though I would share an article on Bernie speaking of sarcoidosis.

Bernie Mac Speaks Candidly About Sarcoidosis

"What do Floyd Mayweather Sr., Tisha Campbell-Martin, Evander Holyfield, Bill Russell and Angie Stone have in common? They are all victims of Sarcoidosis.

Bernie McCain addresses a disease that effects many in the African American community but is little discussed. Sarcoidosis is a disease due to inflammation. The disease is characterized by the presence of granulomas, small areas of inflamed cells. They can be either inside the body or on the body’s exterior, appearing as sores on the face or shins. This afternoon at 5 pm, Bernie will have in studio Kim Carrie Grant to talk about how she deals with Sarcoidosis and on our News Line, Dr. Gavin Henry of St. Agnes Hospital in Baltimore".

Not the biggest or best article out there but the writer made a great attempt to spread awareness. Unfortunately it's not done enough. 

April is National Sarcoidosis Awareness Month

The month of April was declared National Sarcoidosis Awareness Month by US Congress in 2008. Many organizations are observing this and it's a great month t participate in walks, garage sales and many other ways to raise funds for research. 


Here is an article I read this morning about April being Sarcoid month and how Social Security does not yet lists sarcoidosis. http://www.beaumontenterprise.com/business/press-releases/article/April-Is-National-Sarcoidosis-Awareness-Month-3479935.php

Also please read this really great article on the Huffington Post

Making a Difference: The World of Giving -- Sarcoidosis Awareness Month

And lastly click on the Link to go the FSR site and find activities to participate in. 

FSR

Autoimmune Walk for a Cure

I just received a pamphlet in the mail on the annual Autoimmune Walk for a Cure. There is one in NYC for those of us in the metro area. I'm wondering if anyone is interested putting together a team to walk this thing and raise money for this cause.

Although I no longer suffer from sarcoidosis I am forever linked to autoimmune diseases where ever I happen to look.

Let's start with my brother, he has suffered from ulcerative colitis almost his whole life. I have a cousin who suffers from chrons disease. My mother-in-law (RIP) suffered from chrons. My brother-in-law (RIP) also suffered from chrons and who know how many others I may not know about.

I believe this organization is the key because it's every disease united. That means more money for research. This is one of those find a cure for one you may have them for all. Even if science can find a way to control inflammation long term without shutting down your immune system and taking steroids then at least millions of people can live a little better.

Let me know if you live in the tri state area and are interested in walking and raising money for this worthy cause

/http://www.autoimmunewalk.org/

http://www.facebook.com/AutoimmuneWalk

The Bernie Mac Foundation

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!

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

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 and 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

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

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.

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

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

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)

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

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"

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?

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

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.