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Bernie Mac battling sarcoidosis since '83
It killed Reggie White, but Bill Russel’s got it. It kills five per cent of those who have it, but it’s treatable.
“I’ve had sarcoidosis since 1983, and it has not altered or limited my lifestyle,” Mac says. “No one knows where sarcoidosis comes from or where it starts, and there’s no known cause for this condition that effects primarily minorities.”
It primarily attacks the immune system and the lungs. It’s not a good thing to have, but it’s not the worst thing one can have; click here for hard info on the disease. Mac plans to make curing the disease his cause, setting up a foundation and charitable events.
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I’ve had Sarcoidosis diagnosed since 1999. But, I look back and see some of the symptoms dating back to at least 1996. It has affected me some in that I was on Prednisone (steroid medication) for over three years straight and while it helped my symptoms (for me it’s affected both of my eyes and my lungs, possibly my heart as well?) the medication caused quite a bit of weight gain (40 + pounds). I’ve now been off the Prednisone for more than one year. It seems my Sarcoidosis went into remission for now, but I expect it back at some point because that’s the nature of the disease. Good luck to all who have to deal with this disease, as I know things can get pretty bad for some!!
I have been diagnosed with sarcoid since 1993. My symtoms started in October of 1992. This disease attacked my nervous system and I experienced some devastating events until 1994. I have noticed with the proper rest, diet, exercise and the correct multi-vitamins I experience limited symptoms. I know I have the disease but I still function and live life. I pray a lot because the disease is suppose to be self-limiting, meaning it can come and go at will. God has been good to me. Because of this disease I treasure every moment of life and cannot take anything for granted.
I was diagnosed in January of 2002. However, I had mysterious problems occurring after a bad viral infection in 1994. I have had my eyes, joints, central nervous system, ankles, legs, and pancreas affected by this disease. You are all right, you just keep going. I have been looking into natural alternatives – mangosteen juice I have heard from a person also suffering with this, has worked wonders. Maybe it will help you all. Hopefully, some knowlege will be gained into this mysterious disease. God Bless!
I am 15. I have been diagnosed for three years. It is effecting my longs. I am on and off prednisone. I have gained alot of weight. I am still able to be in the band. Running is hard. Many find it hard to believe that a child my age would have it but I do. I wish i would go i remission and I can be off the meds and get my regular siZe back. We have to trvel 150 miles for my test and doctor visits. That means I miss school and I don’t like missing school.
I am 15. I have been diagnosed for three years. It is effecting my longs. I am on and off prednisone. I have gained alot of weight. I am still able to be in the band. Running is hard. Many find it hard to believe that a child my age would have it but I do. I wish i would go i remission and I can be off the meds and get my regular siZe back. We have to trvel 150 miles for my test and doctor visits. That means I miss school and I don’t like missing school. DES in GA
I am 15. I have been diagnosed for three years. It is effecting my longs. I am on and off prednisone. I have gained alot of weight. I am still able to be in the band. Running is hard. Many find it hard to believe that a child my age would have it but I do. I wish i would go i remission and I can be off the meds and get my regular siZe back. We have to trvel 150 miles for my test and doctor visits. That means I miss school and I don’t like missing school.
I have had sarcoidosis for five years(it was found when I flunked a job physical) I work at a nursery and have read that there is a strong association between insecticide exposure and sarcoid. I also have histoplasmosis. Who says that you can’t have them both???!!!!Can’t breathe, can’t work, get winded, fevers, night sweats…tomorrow I start prednisone.
I am a 42 yo Black woman who was diagnosed with Sarcoidosis in about 4 years ago. It attacked my lungs and now I have severely permanaent scarring. I also have COPD. Sarcoidosis has now attached my liver and eyes. I am in constant join pain. I am on and off of prednisone and other respiratory medications. I am willing to help anyone who is trying to find a cure. I am so afraid it will attack my other organs. I never know when I will have a flare-up.
I started the Heart of gold Foundation for Sarcoidosis in memory of my husband Kenneth Glen Dixon SR. Glen passed away on January 31, 2006 of cardiac sarcoidosis he was 54. I have dedicated my life to raising awareness of this devastating disease. I have been on talk shows and radio shows. I do public speaking on the disease. The foundation is having is first annual walk/run in the spring of 2007 in Pittsburgh Pennsylvania. We want this to to be the biggest walk associated with sarcoidosis. We need your help. To find out more about Heart of Gold please visit our site at http://www.heartofgoldgd.orgWe will help find a cure, one breath at a timeRena DixonHeart of Gold Foundation for Sarcoidosis
My mother passed away on March 16, 2007, she was 58. She was diagnosed with sarcoidosis maybe a few years ago, but when we think back she start getting symptoms about 10 years ago, but you wouldn’t relate the symptoms to a disease like this. She was on steroids, prednisone, oxygen and other medicine for sinuses. When we did find out about the disease her lungs was already beginning to get stiff. My sister and I was told that she didn’t want us to worry that’s why she didn’t tell us about it. She stayed in ICU for 5 weeks before she passed, her lungs gave out. If only we would have known in time, but then we think about it God already has everything planned out.We were told to be tested also.Please a cure.Tammy
I’m 41 and I have crohn’s disease – as a result of the prednisone treatment I developed AVN ( A vascular Necrosis ) which lead to hip replacement surgery. 3 days after surgery I started having pain in my chest and under my arm pit and was rushed back to the hospital. At first they thought I had lymphoma. I’m also on Humira for the crohn’s and it can cause lymphoma. I had exploratory surgery and they changed the diagnosis to Sarcoidosis. The doctors played it down, but with the loss of Bernie Mac today it’s apparent it’s not something to play down. I have enough to worry about, now this. I’m glad some of you posted great info and links here. I have a blog I’d like to invite you to. Just simply: http://www.maxshealth.com If I can lend a hand with making more people aware, contact me thru the site. I am a 20 year multi-media professional willing to donate my time and services to getting the message out and educate people. Every little bit helps. For those here who lost a love one, or suffering with this disease my heart goes out to you, but know you have a support group in all of us.
For those of you with serious Sarcoidosis, you may want to talk to your doctor (you need a Rheumatologist)about trying Remicade infusions along with Methotrexate. It is usually difficult to get approved since it is actually for Crohn’s and Rheumatoid Arthritis, but it has been a miracle drug for myself and some others that I know. I was diagnosed with severe Sarcoid back in 2003, but actually had it back in 2000 when something else was rediagnosed as sarcoid. I had it in many organs, bones, lungs, lymph nodes, etc. Basically everywhere it could get except my heart, thank God! After 2 infusions of Remicade, my body was clear of any Sarcoid at all! It’s worth trying to get if you have it as serious as I did. The most important thing about this disease is that you MUST find doctors that are informed! Don’t let them tell you it will just go away and it’s not dangerous. It CAN and does kill. Diane
Wow!!! So many entries I can relate to. My mother suffered from Sarcoid (as she would call it), from 1994-2004. She was put on Prednisone for it, which caused her to gain weight. She qui-tired (her word for retired), in 1996 as a result of her health. At that time she was also put on oxygen. She enjoyed the rest of her years with us. In 1998, I was hospitalized with a flare up of undiagnosed Crohn’s, while getting surgery for another issue. At that time, my mother told me that she saw on the internet that the treatment for Crohn’s was prednisone. I immediately said, I am not taking that. Her response to me was, “you will if it means living or dying.” Although my mother had sarcoidosis, after seeing the many side effects the prednisone had, I was just too stubborn to accept that. I was released with no diagnosis of Crohn’s. In early 2004, my mother sought to be put on a lung transplant list. She didn’t meet the criteria because she was overweight. She had to lose 50 lbs. By August, she had lost the weight, and was to have an appt. with her doctor to discuss the next steps. The week before her appt. her mother passed, so her appointment was rescheduled. When she went to the doctor the next week, she had double pneumonia, and her lungs were so severly damaged by the sarcoid that she couldn’t fight it off. She passed on August 25, 2004. In 2005, I had a flare up of Crohn’s. I immediately told my doctor, find anything except prednisone. He tried a few medications, which did not seem to help. So I asked him to put me on Remicaide. He said to use that as a last resort. I was in and out of the hospital, not able to work. So I fired him, and found a GI center an hour away. I had to have surgery, but was immediately started on remicaide afterwards. I just recently had a colonoscopy, and the doctor says he sees no sign of Crohn’s. So I am truly surprised that Sarcoidosis can be treated with Remicaide. I wish this would have been an option for my mother. I miss her dearly.My heart and prayers go out to Bernie’s family, and anyone else dealing with this disease.
The first detection of Sarcoid came when I was about 26. During a routine chest x-ray, enlarged lymph nodes were found. The doctor monitored the growth of the lymph nodes over the next several months through additional x-rays. Since I had no other symptoms, the doctor told me I had nothing to worry about. I’m 52 now and about 6 years ago I began having trouble breathing, especially when climbing stairs. A Cat Scan and pulmonary function test pointed to Sarcoid. A biopsy confirmed it. I was immediately put on 60 mgs of Prednisone. I remained on Prednisone for over five years and finally stopped about three months ago. Every time they tried to take me off the drug, the disease would advance and cause more damage. About a year ago, I was placed on Methotrexate to tried and get me off the Prednisone. The Prednisone had begun causing some bone thinning and had increased the pressure in my optic nerves. I have also been diagnosed with Diabetes related to the Prednisone. My lungs are permanently scarred. Whenever I get a chest x-ray I have to warn the radiologist beforehand, or else he/she will come running into the examining room in a panic. I give a dramatic chest x-ray. Since coming off the Prednisone, I have had pain in most of my joints. I have acceptable my limitations and I am grateful to be alive and still able to work and provide for my family. I still cough a lot and the disease has affected my eyes and liver as well. I have tired some holistic treatments. But all they did was allow the disease to advance and do more damage.
I am 56 years old WW and I was diagnosed with Sarcoidosis 17 years ago. In the past year and a half I have been hospitalized three times as a result of my breathing. I have been diagnosed with COPD…have had three sinus surgeries…have oxygen in the house…am constantly nauseous and the list goes on. My husband has been diagnosed with Pulmonary Fibrosis from working with Asbestos as a plumber. From speaking with the Pulmonary Fibrosis Foundation, they told me that people with active Sarcoidosis in the lungs are included in the group of Pulmonary Fibrosis. My husband and I are both on disability….way too young! So many doctors take this disease lightly. It should not be “fluffed” off! I have found for me I am very conscious of being around a lot of people or gatherings. I avoid people with perfumes. I find that if I am around either I come down with a cold, which eventually gets very close to or becomes Pneumonia, and that’s where we all have to hope we are strong enough to fight back. The biggest key is to find a pulmonary doctor who is truly familiar with Sarcoidosis. See him regularly…have PFTs, CT scans…make sure he or she is taking this condition seriously! I am currently on Spiriva…which has helped tremendously. I am also on two other inhalers and trying to stay away from the Prednisone if I can. I too have gained some weight, but I am being very careful to stay away from salt and watch what I eat. I purchased a treadmill so I can walk to keep everything going. I have written a letter to Roche Pharmaceutical about Sarcoidosis. The more large companies that recognize and accept the seriousness of this disease, the more likely we will get the treatments we need. Good luck to all of you.
I was diagnosed in 2005 or 2006 when I was 27 years old. Right now it has only effected by sick. So I did not worry to much about it. Lately I have been founding out alot of people are dying from it and now I’m kind of scared. Barnie Mac did look healthy and to think that something like this has taken his life to just get to me. I hate that the world is not educated on this, I wish there was more information on it.
I was diagnosed in 2005 or 2006 when I was 27 years old. Right now it has only effected by skin. So I did not worry to much about it. Lately I have been founding out alot of people are dying from it and now I’m kind of scared. Barnie Mac did look healthy and to think that something like this has taken his life to just get to me. I hate that the world is not educated on this, I wish there was more information on it.
I also have Sarcoidosis and I’d like to see more research done!!!It’s sad how many people are taken away way too early from this disease and those that are still fighting suffer daily.There’s an online petition for USA now out, please take a moment to sign it so we can find a cure today!http://www.thepetitionsite.com/1/sarcoidosis-it-hurtsThanks for listening!
I’m a 31 yr old female that was diagnosed with sarcordosis almost 3 yrs ago. Now educated on the disease I see all the early symptom’s. My Dr just thought I had a bad case of pneumonia and put me on antibiotic. After finishing all the antibiotic and a month later feeling worse, I return back to see my Dr. She just put me on a different type of antibiotic. I continued to feel bad and begin to have chest pain so I went to the ER,after been in the hospital for over a week,i was told I had sarcordosis. Never heard of it in my life. I also suffer from asthma. So I began to take a high dose of Prednisone for a few months and no change in my condition, my Dr tried Remicaide,no help so I was then put on a high dose of Methotrexate for a couple of months, still on change. My Dr begin to worry. I began to gain so much weight and was also put on oxygen. I’m now on Methyprednisolone along with other med’s. My condition is still the same from day one. I now travel 2 hours away to see a specialist,which referred me to a clinic in Denver but i can’t afford it. All my Dr told me they have tried everything they know of and don’t know what eles to do for me. So to the Mac family and every other family dealing with sarcordosis, I truly wish you the best and my heart goes out to you.