This is a really good video man. I really love this song. This is the first vid i saw in the search results so i watched it and after reading the description i looked up the actual disease. It only made me respect the video more, as well as you're dealing with such and illness. I hope everything works out for you.
Nice to see your video , the doctor told my husband in may of 08 that he had sarcoidosis. It was found in his brain after haveing a seizure....now today July 21,2008 we were told that the ct and pet scans showed its in his liver and lungs....Feels like we are in this battle alone. Thank you for your video we will keep you all in our prayers. The Cooper family (Winter Haven,FL
That's incredibly interesting... haven't heard that happening before. I guess all I can say is keep up the good health and stay on top of your yearly check-ups. Thanks for the story.
I hope they figure it out. I know how it feels, I wasn't diagnosed for a long time and kept getting worse. They finally figured it out when they saw the inflammation in the back of my eyes.
HI..... I too have sarcoids disease. Swollen lymph nodes on my lungs, chest pain and an irritated right eye. Its a little debilitating for me. I can usualy work about 4 to 5 hours a day before getting tired. I never thought I would live a life of just getting by day to day but I sure feel a bit better than a year ago....
yeah, you sound like me. I just started a new job and I am having trouble making it through the day without horrilbe headaches and being tired. I am also battling my 2nd cold in 2 weeks. Having a suppressed immune system isn't fun. I believe the nodes in my lungs have shrunk but I do have permenant damage to my right eye. Hang in there and feel better.
Hey everyone. great video here. i will be doing my own video soon as well. I have been disabled for 16 years because of this disease. After being on very high doses of Prednisone and pain killers for many years i turned to herbs and other alternatives. i now test sarcoid negative but severe damaga was done to my spinal chord from the disease. My advice to everyone is not to depend on the medical establishment. do your own researcha and take control of your health.
Yes thanks, I'm doing pretty well. It mostly bothers my joints and makes my ankles swell...it did a number on my heart some time ago, but that has been remedied. It doesn't have any pattern or predictibility, it affects everyone in different ways. It doesn't seem to be in my lungs, but appears in x-rays as a possible lung involvement - when in reality it is the swollen lymph glands behind the lungs. How are you doing now?
Doing better, for me it affected the nerves in my head, eyes, ears, lungs a little bit, and vestibular system which affected my ability to walk. Right now it is mostly the drug based side-effects that are messing with me but my prednisone is tapered down to a point that they seem to be going away. Let's just hope the Methotrexate can do it's job.
I was first diagnosed in '82, prednisone (HORRIFIC weight gain), relapse in 90's (refused treatment), now back again. Scarring on heart caused syncopy, now I have a pacemaker. Feel OK 'cept for joint pain...but its a sneaky disease and you can't know what's going on inside. Hang in there. Read as much as you can and be ready to defend your decisions. Most of 'us' live with it with inconvenient side effects, worst case scenerios are rare.
hello gcbspender, this is a lovely video and very touching. I, too have sarcoidosis and am a prisoner in my own home. To me, this video shows that I am not alone. Because sarcoidosis isn't very common in can sometimes feel I am the only one in the world suffering from this devastating disease. Thankyou for making the vid, I hope you are recovering.
I am right there with you and hope, you too, are on the road to recovery. Sometimes it doesn't even seem like the Doctors know what they are doing with this disease, as it is that rare. I can only assume and hope you have better health care over there in the UK. Thanks for the comments and well wishes and you most defintely are not alone.
I just buried my brother today, at the age of 58, after his 17 year battle with sarcoidosis.This horrific disease needs to be stopped.. best of luck to you gcbspender..for a full recovery.
Thank you for your comments and concern. I am so sorry for your loss. I agree that this needs to be stopped, a friend of mine is actually in the process to help set up a fundraiser to try and get money for research against this disease.
Keep me posted on any fundraiser..I would be glad to help and or donate...I am making a donation this week to the foundation for sarcoidosis research ..I am just praying no one else in my family will be struck with this devastating disease.
This is a really good video man. I really love this song. This is the first vid i saw in the search results so i watched it and after reading the description i looked up the actual disease. It only made me respect the video more, as well as you're dealing with such and illness. I hope everything works out for you.
Gabrie1GT2 3 years ago
Nice to see your video , the doctor told my husband in may of 08 that he had sarcoidosis. It was found in his brain after haveing a seizure....now today July 21,2008 we were told that the ct and pet scans showed its in his liver and lungs....Feels like we are in this battle alone. Thank you for your video we will keep you all in our prayers. The Cooper family (Winter Haven,FL
brandykaycooper 3 years ago
That's incredibly interesting... haven't heard that happening before. I guess all I can say is keep up the good health and stay on top of your yearly check-ups. Thanks for the story.
gcbspender 3 years ago
Hi,
I hope they figure it out. I know how it feels, I wasn't diagnosed for a long time and kept getting worse. They finally figured it out when they saw the inflammation in the back of my eyes.
gcbspender 4 years ago
HI..... I too have sarcoids disease. Swollen lymph nodes on my lungs, chest pain and an irritated right eye. Its a little debilitating for me. I can usualy work about 4 to 5 hours a day before getting tired. I never thought I would live a life of just getting by day to day but I sure feel a bit better than a year ago....
varminblast 4 years ago
yeah, you sound like me. I just started a new job and I am having trouble making it through the day without horrilbe headaches and being tired. I am also battling my 2nd cold in 2 weeks. Having a suppressed immune system isn't fun. I believe the nodes in my lungs have shrunk but I do have permenant damage to my right eye. Hang in there and feel better.
gcbspender 4 years ago
Hey everyone. great video here. i will be doing my own video soon as well. I have been disabled for 16 years because of this disease. After being on very high doses of Prednisone and pain killers for many years i turned to herbs and other alternatives. i now test sarcoid negative but severe damaga was done to my spinal chord from the disease. My advice to everyone is not to depend on the medical establishment. do your own researcha and take control of your health.
Peace!
newblackmusic 4 years ago
Can't wait to see your work! So sorry you've sustained so much damage from this.
gcbspender 4 years ago
Yes thanks, I'm doing pretty well. It mostly bothers my joints and makes my ankles swell...it did a number on my heart some time ago, but that has been remedied. It doesn't have any pattern or predictibility, it affects everyone in different ways. It doesn't seem to be in my lungs, but appears in x-rays as a possible lung involvement - when in reality it is the swollen lymph glands behind the lungs. How are you doing now?
twinkart 4 years ago
Doing better, for me it affected the nerves in my head, eyes, ears, lungs a little bit, and vestibular system which affected my ability to walk. Right now it is mostly the drug based side-effects that are messing with me but my prednisone is tapered down to a point that they seem to be going away. Let's just hope the Methotrexate can do it's job.
gcbspender 4 years ago
I was first diagnosed in '82, prednisone (HORRIFIC weight gain), relapse in 90's (refused treatment), now back again. Scarring on heart caused syncopy, now I have a pacemaker. Feel OK 'cept for joint pain...but its a sneaky disease and you can't know what's going on inside. Hang in there. Read as much as you can and be ready to defend your decisions. Most of 'us' live with it with inconvenient side effects, worst case scenerios are rare.
twinkart 4 years ago
Thank you for passing on some of your wisdom. I greatly appreciate any advice. Hope you are doing well.
gcbspender 4 years ago
hello gcbspender, this is a lovely video and very touching. I, too have sarcoidosis and am a prisoner in my own home. To me, this video shows that I am not alone. Because sarcoidosis isn't very common in can sometimes feel I am the only one in the world suffering from this devastating disease. Thankyou for making the vid, I hope you are recovering.
tillie86 4 years ago
Hi,
I am right there with you and hope, you too, are on the road to recovery. Sometimes it doesn't even seem like the Doctors know what they are doing with this disease, as it is that rare. I can only assume and hope you have better health care over there in the UK. Thanks for the comments and well wishes and you most defintely are not alone.
gcbspender 4 years ago
I just buried my brother today, at the age of 58, after his 17 year battle with sarcoidosis.This horrific disease needs to be stopped.. best of luck to you gcbspender..for a full recovery.
mommy2matt 4 years ago
Thank you for your comments and concern. I am so sorry for your loss. I agree that this needs to be stopped, a friend of mine is actually in the process to help set up a fundraiser to try and get money for research against this disease.
gcbspender 4 years ago
Keep me posted on any fundraiser..I would be glad to help and or donate...I am making a donation this week to the foundation for sarcoidosis research ..I am just praying no one else in my family will be struck with this devastating disease.
mommy2matt 4 years ago
best of the contest. All the best to you, and thanks for the great video.
missoulaglory 4 years ago
awesome video man.
hope you're doing better.
dreadiedan 4 years ago