MICHAEL JACKSON GIVES LUPUS NEW FACE

LET'S PUT AN END TO IGNORANCE!

2009-07-03T08:10:00.007-04:00

DISCLAIMER While on Twitter, I recently received a repeat tweet (RT) link to a very disturbing, inaccurate blog entitled 'My two cents on Michael Jackson and Lupus.' I have chosen to bring Miss Feva's log to your attention, as an example of how far we still have to go in the fight to get SLE understood. Please note, upon reviewing the entire post and all links therein, as well as all Twitter links, I discovered it appears the sole intent of the author was not to provide accurate, helpful information regarding lupus to the masses, but instead, the tone within oddly smells of a retaliatory action upon the lupus 'twitter' she refers to in her blog, whom it seems 'blocked' her tweets. Nevertheless, regardless of how we got here, it is my belief a blog misrepresentative of the truth can be extremely harmful to the positive gains established by the facts, and deserves to be addressed. Hense the purpose for this blog.

Hi Fellow "Lupee's"

Sadly, the majority of the referenced blog, tagged and filed under 2cents, celebrity/celebutard, dumbass, health, illness, in the news, linkage, lupus, social networks, twitter is full of fallacies and misperceptions that must be addressed. Unfortunately, much like many naysayers, the blogger has chosen to ignore the solid facts regarding Michael Jackson's diagnosis presented to date by Dr. Deepok Chopra, a well respected physician, CNN's Anderson Cooper, etc. Instead the blogger, Miss Feva, has chosen to compare MJ's known systemic lupus diagnosis to that of Anna Nichole's known drug use and overdose. Accordingly, upon her own admission, states he may have discoid lupus but, "I find it extremely hard to believe he had systemic lupus." Miss Feva, I hate to point out the obvious, but just because we don't want to believe something, doesn't make it any less true.

The most disconcerting part of this blog? When I came upon the bloggers note, "People believe what they want to believe." Well, yes - that goes for anything - if they're not told the truth! Therefore, as a whole, we must speak the truth together.

Here are the facts vs fiction, according to what is stated in her blog and what has been reported:

1. "The initial autospy report was found to be inconclusive."
-- As of July 2, 2009, there has been no autopsy report released.
2. "He passed a physical exam required for tour insurance"
--SLE cannot be diagnosed in a 5 hour physical exam or bloodwork
3. "No legitimate doctor would approve of a lupus patient’s exposure to possible UV rays from stage lighting, nor would they condone the physical exertion of a performance of MJ’s caliber.
--Just because a Dr wouldn't condone or approve of it, doesn't mean it doesn't happen.
4. "Due to liability, no promoter would allow an artist to embark on a rigorous, multi-date tour without doctor's approval."
--It appears, in this case - not only did the promotor allow it for an initial ten dates - he added another forty - for a total of $85mil in ticket sales! And, when asked by CNN if he'd do it again, he resounded, "HELL YES!"
5. "Also, Michael Jackson’s immediate family hasn’t indicated any lupus involvement and his ex-wife is pretty convinced his death was drug related. But, as Jermaine Jackson stated, the cause of his death is unknown until results of the autopsy are done.
--A 6/25/09 'family statement' to the Associated Press would never divulge Michael Jackson's lupus diagnosis, due to the liability it would create upon their own inheritance.
--A 'My space' blog off of Maria Presley's page is her opinion of drug use, henseforth, supposition.

Quite an interesting dicotomy here. Apparently, the blogger asked for public documentation about Jackson's lupus and, despite receiving proof, wasn't satisfied with the source. According to her blog, she claims she read a People Magazine article by Leslie Messer, whereby Jackson's friend and physican Dr. Deepok Chopra admits to MJ's lupus diagnosis, stating, "Lupus is a chronic autoimmune disease that can damage any part of the body." (Note, this is definitely NOT a reference to discoid lupus.) Consequently, CNN's Anderson Cooper also confirmed and verified the validity of Deepok' statement on international television, by asking Chopra himself. In addition to the People article, the blogger references the Huffington Post article by Bonnie Fuller, wherein Fuller not only shares about Jackson's illness, but spoke to Dr. Michael Lockshin, a rhematolgist, who explained, "Mild lupus sufferers, like Jackson, are actually more at risk for having a fatal heart attack'.

Pardon me Miss Feva, but if that is not the factual truth, what is? Also, was it not your blog that firmly stands upon and suggests Jackson had discoid lupus? Where is your evidence to support this claim?

Admittedly, my spirits became hopeful when I read these words: "...misinformation about lupus is rampant and creates road blocks for a general awareness of the disease. I wish people would use more caution before speading around information like this." A tiny suggestion Miss Feva? Perhaps it might be wise to take your words to heart.

Moreover, the claim that, "...some lupus patients have a desperate need for a huge celebrity to be plagued with lupus in order to have some sort of spokesperson or validation..." seems rather cruel and coldhearted. Most certainly, the timing of such statement, feels hurtful beyond measure to all systemic lupus sufferers, including Michael Jackson himself. But for you Ms. Feva to judge and say, "these are the same people that let lupus become their identity...because it's the only thing remotely interesting and unique about their lives" begs me to wonder why, once you've heard the truth - you still deny it -- insisting on this insideous, angry, malicious blog of untruths.

In closing, forgive me while I digress, but was it not your blog that said, "I don't know what I hate more-shotty journalists or the people that believe everything that they read on the internet?"

Perhaps we need a refund on your two cents

It is abundantly clear that this blog is not only a misrepresentation of the true and current facts in this case, but is also thoroughly full of outdated, incorrect information. I can only speak for myself, BUT, let me be clear, Miss Feva, just by its existance alone, you do every lupus sufferer among us a disservice when you chose to stick with anything other than the known facts.

http://nevafeva.com/blog/?p=1580

neva, miss feva, blogging

all game, no plot

My Two Cents on MJ and Lupus

Just like with Anna Nicole, there are rumors going around that Michael Jackson died from lupus. While it is possible that he suffered from discoid lupus (which affects the only the skin), I find it extremely hard to believe he had systemic lupus.

For starters, the initial autopsy report was found to be inconclusive and he had passed a physical exam required for tour insurance. No legitimate doctor would approve of a lupus patient’s exposure to possible UV rays from stage lighting, nor would they condone the physical exertion of a performance of MJ’s caliber. Therefore, due to liability, no promoter would allow an artist to embark on a rigorous, multi-date tour without a doctor’s approval.

Also, Michael Jackson’s immediate family hasn’t indicated any lupus involvement and his ex-wife is pretty convinced his death was drug related. But, as Jermaine Jackson stated, the cause of his death is unknown until results of the autopsy are done.

I could go on and no, but I won’t.

I have been having a bitch-fest with some dipshit on Twitter who felt the need to ‘educate’ me on the subject by sending me links to the Huffington Post and People.com. (I asked her to provide some sort of official public document, but that was the best she could do). I don’t know who I hate more–shotty journalists or the people that actually believe everything they read on the internet. Misinformation about lupus is rampant and creates road blocks for a general awareness of the disease. I wish people would use more caution before spreading around information like this.

But, sadly, people believe what they want to believe. Some lupus patients have a desperate need for a huge celebrity to be plagued with lupus in order to have some sort of spokesperson or validation. These are the same people that have let lupus become their identity, probably because it’s only thing remotely interesting and unique about their lives. I feel sorry for these people and I hope I never let systemic lupus–or any other illness and/or physical imperfection–define me as a person.

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This entry was posted on Thursday, July 2nd, 2009 at 11:14 pm and is filed under 2cents, celebrity/celebutard, dumbass, health, illness, in the news, linkage, lupus, social networks, twitter. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.

WAY TO GO, ANDERSON COOPER!!!! Our new #1 LUPUS SUPPORTER!!!

2009-06-30T02:45:00.005-04:00

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

***~~ M I C H A E L...J A C K S O N ~~*** .....GIVES.....SYSTEMIC.....LUPUS....A.....NEW.....FACE....

2009-06-28T10:39:00.010-04:00

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!!

MICHAEL JACKSON GIVES LUPUS NEW FACE

LET'S PUT AN END TO IGNORANCE!

neva, miss feva, blogging

My Two Cents on MJ and Lupus

WAY TO GO, ANDERSON COOPER!!!! Our new #1 LUPUS SUPPORTER!!!

~~***~~~***~~~ M I C H A E L...J A C K S O N ~~~***~~~***~~ .....GIVES.....SYSTEMIC.....LUPUS....A.....NEW.....FACE....

***~~ M I C H A E L...J A C K S O N ~~*** .....GIVES.....SYSTEMIC.....LUPUS....A.....NEW.....FACE....