THANK YOU, THANK YOU, THANK YOU for enlightening the CNN viewers regarding Michael Jackson's Lupus diagnosis and struggle for over 20 years!!! Unfortunately, our education came at a very high price! Nevertheless, I know I speak for the million Lupus sufferers in the U.S., when I say, "WE APPLAUD YOU!"
I recently came across a November 2008 interview* whereby, Dr. Daniel Wallace, a world expert in lupus (systemic lupus erythematosis) management, was asked, "What is Lupus?" He explained, "Lupus is what happens when the body becomes allergic to itself. It’s the opposite of cancer and AIDS."
He went on to explain the gravity of a very misunderstood disease, stating, "Organ-threatening lupus is very serious.....Half of lupus patients with organ-threatening disease currently die by the time they’ve had the disease for 20 years. That’s simply not acceptable."
Sadly, with the loss of Michael Jackson during that timeframe, the most prominent lupus victim to date, I agree, this statistic MUST CHANGE!
However we should also be encouraged as Dr. Wallace gave us enormous hope, "If we can find a cure for lupus, we could also find a cure for cancer. Lupus research is extremely important."
Isn't it time that we go back to the basics and start focusing on understanding WHY things work the way they do? Perhaps then, we can categorically change the face of cancer, AIDS and disease altogether.
*http://www.getbetterhealth.com/could-a-cure-for-lupus-lead-to-a-cure-for-cancer/2008.11.02#more-2417
Tuesday, June 30, 2009
Sunday, June 28, 2009
~~***~~~***~~~ M I C H A E L...J A C K S O N ~~~***~~~***~~ .....GIVES.....SYSTEMIC.....LUPUS....A.....NEW.....FACE....
I've read the articles and heard reports that MJ's Lupus was 'IN' remission. True he had lupus - an incurable, often fatal disease if not treated properly - BUT with Systemic Lupus Erythematosus (SLE) one can be 'IN' remission one day and 'OUT' the next, seriously fighting a battle for one's life, especially if heavy STRESS is widely present! Unquestionably, Michael Jackson was under enormous stress, just by his lifestyle alone! Toss Lupus (SLE) into the mix and one IS SURELY looking at a shortened life, if stress isn't kept to an absolute minimum!
Undoubtedly, the numerous meds prescribed for pain, etc. made MJ act odd throughout the years. ~ BUT... let me offer this scenario... What would you do if you had to cope with chronic muscular/skeletal aches and pain that is nearly unbearable?! I've had to, as well as countless other lupus sufferers who fight their own private battle, and let me tell you, no matter the decision, its no walk in the park!!!
Systemic Lupus IS VERY misunderstood and is quite scary for many who are not familiar with it. Many times, I've had to explain Lupus isn't contagious! Nevertheless, people create their own opinions without doing the research and yes, even pull away out of fear! Try coupling a wheelchair with ANY disease and it seems to scare people, reminding them of their own vulnerability. Although, for one moment, imagine the fear of the one sitting IN IT, fighting a disease for which there is no cure!
Oddly, with Lupus, one can look fairly healthy on the outside, but the inside can be a completely different story! SLE is incredibly baffling, even in the medical community, because Lupus can present itself in so many different ways! We need to remember, just because MJ could dance with passion and exuberance, doesn't always mean he was healthy enough to do so! Offering a glimpse at my life alone, the doctors state I am a miracle and shouldn't be here! However, my battle is far different from any battle fought by MJ! I survive because I DON'T HAVE TO HIDE my condition, various choices for treatments and much needed medical care!
No doubt, if Michael Jackson was frail and in a severe flare, and suffered, as reported, A1AD (a1-Antitrypsin deficiency) and anorexia (all notable manifestations of SLE) prior to his upcoming schedule; and, the money problems were as dire as is being reported; then, the stress to perform and protect a secret - for fear he and his future London concerts were uninsurable - would be immeasurable! Even his statement, "this is my last curtain call" weighs heavy and seems to allude to a private secret, and a clear need to slow down his life!
Now, as I think back to Jackson's odd behavior early on - running around in a mask and covered up from head to toe - it makes more sense! Perhaps, in the beginning, the face mask wasn't meant to be mysterious, yet by its mere existence, evolved with the rumors. Instead, it was likely a protective measure for MJ [and later on his kids,] from picking up any number of countless germs from any one of his millions of fans that could invade his space and ultimately throw his body into a very serious life threatening flare! As for covering up, each and every Lupus sufferer is instructed to do the same exact thing!
Not surprising, as soon as I found out I was seriously ill with a life altering, life threatening illness, I got angry. Then, soon after, went into complete fighting mode and began to research numerous ways to protect myself and increase my life span! My focus became Drs, tests, prayer, medication, juices, health food, vitamins, as well as avoiding ill people like the plaque! Bottom line, I knew I had a lifetime to experience and wanted to live, so, yes, I even considered acupuncture, oxygen therapy, meditation, you name it!!
Strange enough, after MJ's 1986 SLE diagnosis, he did change from the "Man in the Mirror" we once knew. And ultimately, he did what you or I might do, and privately protected his lupus secret. Yet, in his case - with his notriety - it was for years!
However, shortly thereafter, the public grew fascinated by leaking rumors and reports that MJ was looking at, and appeared to be exercising, futuristic options to extend his life span, via the hyperbaric chamber, etc., along with cultivating his unique, much publicized, curiosity with another life threatening disorder of the elephant man. In addition, to further add to our bewilderment, we watched perplexed, as Michael's nose became smaller and smaller. Could it be he was continually trying to remove telltale signs of the common 'lupus rash' that covers the nose/cheeks and affects many lupus sufferers? We'll never ever really know, but collectively perhaps these things could be the actions of a man fighting demons a very misunderstood disease left in his midst.
Remember Rock Hudson's battle with AIDS? People made their own personal judgment calls based upon what they suspected due to the reclusive life he lived. Speaking from experience, when I'm in a lupus flare, I lay low and essentially become a hermit! Recently I even considered donning a facemask to avoid the swine flu - which is known to take lives of those with compromised immune systems such as mine!!! Perhaps this behavior opens one up to judgment too!! Nevertheless, isn't it wiser to exercise a little caution and risk gossip? Than, to put my family where the Jackson's family is now... saying goodbye to a loved one...
Finally, consider this ~ I doubt Michael Jackson ever wanted our sympathy; or, for us to feel sorry for him! HE WANTED OUR ADMIRATION!
~~~YET ~~~ the caveat, people don't admire disease!!!
As a fellow Lupus sufferer my heart truly breaks! I can only imagine the pain he endured behind each and every performance.... both in his public and private life as well...
Perhaps, now, we have a new understanding of Systemic Lupus and what it can do, whether or not the cardiac arrest was primary or secondary to the Lupus! My only regret, too bad our education came too late, and in the loss of our one and only King of Pop!!
Undoubtedly, the numerous meds prescribed for pain, etc. made MJ act odd throughout the years. ~ BUT... let me offer this scenario... What would you do if you had to cope with chronic muscular/skeletal aches and pain that is nearly unbearable?! I've had to, as well as countless other lupus sufferers who fight their own private battle, and let me tell you, no matter the decision, its no walk in the park!!!
Systemic Lupus IS VERY misunderstood and is quite scary for many who are not familiar with it. Many times, I've had to explain Lupus isn't contagious! Nevertheless, people create their own opinions without doing the research and yes, even pull away out of fear! Try coupling a wheelchair with ANY disease and it seems to scare people, reminding them of their own vulnerability. Although, for one moment, imagine the fear of the one sitting IN IT, fighting a disease for which there is no cure!
Oddly, with Lupus, one can look fairly healthy on the outside, but the inside can be a completely different story! SLE is incredibly baffling, even in the medical community, because Lupus can present itself in so many different ways! We need to remember, just because MJ could dance with passion and exuberance, doesn't always mean he was healthy enough to do so! Offering a glimpse at my life alone, the doctors state I am a miracle and shouldn't be here! However, my battle is far different from any battle fought by MJ! I survive because I DON'T HAVE TO HIDE my condition, various choices for treatments and much needed medical care!
No doubt, if Michael Jackson was frail and in a severe flare, and suffered, as reported, A1AD (a1-Antitrypsin deficiency) and anorexia (all notable manifestations of SLE) prior to his upcoming schedule; and, the money problems were as dire as is being reported; then, the stress to perform and protect a secret - for fear he and his future London concerts were uninsurable - would be immeasurable! Even his statement, "this is my last curtain call" weighs heavy and seems to allude to a private secret, and a clear need to slow down his life!
Now, as I think back to Jackson's odd behavior early on - running around in a mask and covered up from head to toe - it makes more sense! Perhaps, in the beginning, the face mask wasn't meant to be mysterious, yet by its mere existence, evolved with the rumors. Instead, it was likely a protective measure for MJ [and later on his kids,] from picking up any number of countless germs from any one of his millions of fans that could invade his space and ultimately throw his body into a very serious life threatening flare! As for covering up, each and every Lupus sufferer is instructed to do the same exact thing!
Not surprising, as soon as I found out I was seriously ill with a life altering, life threatening illness, I got angry. Then, soon after, went into complete fighting mode and began to research numerous ways to protect myself and increase my life span! My focus became Drs, tests, prayer, medication, juices, health food, vitamins, as well as avoiding ill people like the plaque! Bottom line, I knew I had a lifetime to experience and wanted to live, so, yes, I even considered acupuncture, oxygen therapy, meditation, you name it!!
Strange enough, after MJ's 1986 SLE diagnosis, he did change from the "Man in the Mirror" we once knew. And ultimately, he did what you or I might do, and privately protected his lupus secret. Yet, in his case - with his notriety - it was for years!
However, shortly thereafter, the public grew fascinated by leaking rumors and reports that MJ was looking at, and appeared to be exercising, futuristic options to extend his life span, via the hyperbaric chamber, etc., along with cultivating his unique, much publicized, curiosity with another life threatening disorder of the elephant man. In addition, to further add to our bewilderment, we watched perplexed, as Michael's nose became smaller and smaller. Could it be he was continually trying to remove telltale signs of the common 'lupus rash' that covers the nose/cheeks and affects many lupus sufferers? We'll never ever really know, but collectively perhaps these things could be the actions of a man fighting demons a very misunderstood disease left in his midst.
Remember Rock Hudson's battle with AIDS? People made their own personal judgment calls based upon what they suspected due to the reclusive life he lived. Speaking from experience, when I'm in a lupus flare, I lay low and essentially become a hermit! Recently I even considered donning a facemask to avoid the swine flu - which is known to take lives of those with compromised immune systems such as mine!!! Perhaps this behavior opens one up to judgment too!! Nevertheless, isn't it wiser to exercise a little caution and risk gossip? Than, to put my family where the Jackson's family is now... saying goodbye to a loved one...
Finally, consider this ~ I doubt Michael Jackson ever wanted our sympathy; or, for us to feel sorry for him! HE WANTED OUR ADMIRATION!
~~~YET ~~~ the caveat, people don't admire disease!!!
As a fellow Lupus sufferer my heart truly breaks! I can only imagine the pain he endured behind each and every performance.... both in his public and private life as well...
Perhaps, now, we have a new understanding of Systemic Lupus and what it can do, whether or not the cardiac arrest was primary or secondary to the Lupus! My only regret, too bad our education came too late, and in the loss of our one and only King of Pop!!
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