Sunday, June 28, 2009

The word is now out that Michael Jackson had lupus

As a friend of mine wrote to me in email, it would have been a tremendous help to those of us suffering from autoimmune disease had he disclosed this publicly. Basically we have all been waiting for a major celebrity to either have one of our diseases and go public or to just adopt us out of kindness. Celebrity involvement seems to be the only way these days to get the media exposure needed for increasing awareness, which helps with early diagnosis and thus less severe disease, with fundraising for research and for helping patients, and with educating the public so that patients experience less prejudice and misjudgment.

However, I know private individuals who keep their lupus a secret. Their reasons generally have to do with employment and health insurance concerns. As someone who made the decision years ago to do the opposite, to be as public as possible in order to help others get diagnosed earlier in the course of the disease than I was, I know from experience that it is in fact easy to encounter problems with employers and health insurance once one is known as a PWL (person with lupus!)

As anyone who has ever had the good or bad fortune to be around me for any length of time knows: the Amercian social safety net for the chronically ill, and the opportunties that one would think exist for creative ways to contribute to society while still having health care, food, clothing, and shelter, are not there. Not there to the point that people even needlessly lose their lives. And improving this situation been so consistently opposed by one political party, for reasons I don't completely understand, that I had to leave that party over this issue. (Now, as an odd kind of passionate and vocal political moderate, I am equally hated by everyone, lol.)

Anyway, maybe MJ had lupus. He certainly fits the pattern of disappearing and reappearing (when too sick to do anything else some of us have no choice but to have "down time",) of doing odd things (could be some brain involvement, or pain med side effects, but a lot of the things have a good lupus explanation, like the sunglasses and the parasol,) and of being mysteriously ill a lot but with different parts of the body being affected.

Here is a link , and another link .

Admittedly I've known of the rumor that he had lupus for years now. But I never did learn of any confirmation, and there are a lot of rumors about celebrities which turn out to be untrue. Some, of course, have publicly disclosed it and have even helped with fundraising for lupus organizations.

I've heard that Emily Dickinson and Louisa May Alcott might have had lupus (two writers whose work I have loved) ... I admit to being curious!

Michael, rest in peace.

Thursday, June 18, 2009

Good old lupus

Well, survived acute bronchitis, again. But barely.

The Cough of Doom is finally gone. Am almost, but not quite, finished with the prednisone withdrawal. I need to get down to 5 mg/day like I was before (wish I could be at 0...sigh. Am on 10/day now. Not so hot considering I have diabetes and osteopenia and AVN already...and have a history of steroid-induced high ocular pressure with glaucoma in the family.)

I got excited that is was summer -- formerly my worst season, but now I know I have to avoid sun and heat, and the horrible and strange colds and flu which have plagued where I live through the cooler months are now gone. However, I immediately overdid it. We needed to put a twin bed in our place so my mom can sleep over here sometimes. There are still a ton of books etc. that now need to be put away, but my body has gone on strike. Today I was crippled by joint pains and overwhleming fatigue. I keep falling asleep wherever I find myself. Exhausted. It was Tuesday we did the heavy work; I had aches and pains and was very tired yesterday, but worse today with some pain on breathing so I know it's SLE rearing its ugly little head.

It was a huge job to write this short entry! Everything feels soooooo difficult. I have one eye which I am trying to force open so I don't fall asleep but this is not working. zzzzzzzz.

About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at that I've had so long I'm probably stuck with :) My other blogs are here on blogger...