August 29, 2004... Man's HIV Diagnosis Reversed 8 Years Later

Aug 29, 9:55 PM (ET)

SAN FRANCISCO (AP) - A California man who once tested positive for HIV has learned the diagnosis made eight years ago was mistaken and he never had the virus that causes AIDS.

Jim Malone spent years battling depression and losing weight, expecting to die at any time. He attended support group meetings and accepted free meals from an AIDS charity. Malone's main doctor, Richard Karp, acknowledged the error in an Aug. 4 letter to the Department of Veterans Affairs clinic where Malone was treated.

"As his primary care provider, I take full responsibility," the doctor wrote.

Malone, who is gay and has lost friends to AIDS, said he is relieved but angry at his doctor.

"He told me, 'We made a very big mistake. We did not do our job,'" he said. "I said, 'You mean to tell me that all you have to say is you are sorry? Sorry that I lived for all this time believing I was going to die?'"

The Oakland Department of Veterans Affairs is investigating.

The error may have occurred because Malone arrived at the clinic in 1996 with lab results from a testing firm showing he had HIV, said Karen Pridmore, spokeswoman for the VA's Northern California Health Care System.

The clinic performed its own HIV test on Malone to confirm the first set of results and it came back negative, but that information was never shared with the patient, Pridmore said.

The mistake was uncovered by the VA's computer system, which tracks HIV patients and conducts a periodic review of cases.

My Two Cents -- This is one of the most completely fџcked up things I've ever read.  As a person living with disability I can't imagine dealing with the emotional aspects of disease without having any of the physical aspects.  I'd relate it to living life in the witness protection program, leading a normal life without any problems, but having the weight of knowing you could get wacked any moment.  Many cancer survivors talk about remission as a period in their lives where they aren't sure who the enemy is and where it's going to attack, or if it's ever going to return.

My sincere hope is that Mr. Malone isn't so thankful and relieved that he forgets the real problem.  His problem was never HIV, it was medical malpractice!

I also sincerely hope his problem wasn't prejudice.  In a city so devastated by AIDS in the '80s and '90s, another gay man with AIDS should still have received as much attention as the first man diagnosed.

Too bad I'm not a potential jury member in this case.  Mr. Malone would be well paid for the past eight years.

August 27, 2004... Funny Friday

From a SunFyre reader... thanks Michele.

Before she could offer her apologies for so rudely staring, he leaned over and whispered to her, "I'll do anything, absolutely anything that you want me to do, no matter how kinky, for $20.00... on one condition." (There are always conditions).

Flabbergasted, the woman asked what the condition was. The man replied, "You have to tell  me what you want me to do in just three words."  The woman considered his proposition for a moment, and then slowly removed a $20 bill from her purse, which she pressed into the man's hand along with her address.  She looked deeply into his eyes, and slowly and meaningfully said... 

"Clean my house."

August 21, 2004... Deprived

I'm sleep deprived.  It's funny, I hear people complaining about being tired.  They talk about getting six hours, or complain about being so tired they could collapse.

They have no idea.

One of the effects of my disability, is diaphragmatic weakness.  Spinal Muscular Atrophy affects my voluntary muscles, weakening them to practically infantile states.  Both of my two year old twins are significantly stronger than me.  My heart, lungs and digestive track are normal, involuntary muscles aren't affected.  I have some difficulty in the respiratory area because my diaphragm (a voluntary muscle) is affected.  It's harder to cough, or take those shallow breaths most of you take for granted.

I've always known I could get pneumonia and die simply because I couldn't cough out the infectious bacteria.  But, I'm generally very healthy, and have only experienced pneumonia three times in my 34 years, the last time was nearly a decade ago.

Anyhow, this diaphragmatic weakness has another strange side effect that's just presented itself fairly recently.  When I'm drifting into REM sleep, I stop breathing, or breathe so lightly that I don't empty the carbon dioxide out of my lungs.  The result is that I wake up slightly during REM sleep, up to 30-40 times per hour.

I seldom wake up completely, when I do I'm gasping for breath, but I drift in and out of REM.

Three effects are common.  First, pounding headaches similar to migraines, first thing in the morning.  These feel like I was hit in the eye with a brick during the night.  I get out of bed and take a few deep breaths, and the headache goes away within twenty or thirty minutes.

The second effect is extreme fatigue.  People claiming they could fall asleep at any moment don't comprehend what it's like.  I literally can fall asleep sitting up with my eyes half open in a few seconds.  My daytime sleep isn't restful.  In a day like today, I could fall asleep for a few seconds to a minute more than 100 times throughout the day.  I can't get myself out of my wheelchair, so I can't even purposely nap.

Finally, there is the nightmares.  My dreams are extremely vivid, because I'm waking up during REM sleep, when we dream.  For the occasional sex dream, I kind of enjoy the vividness, but those are few and far between.  I dream about whatever had my attention that day.

Last Sunday, I watched the Hungarian Grand Prix.  It was a good race, but relatively uneventful.  Michael Schumacher won again.  That night I had a dream that Robbie Gordon (an open-wheel racer gone NASCAR) was racing Formula 1.  He pulled into the pits and his car ignited a fuel fire.  For some reason the race had already ended, so fire crews weren't available.  I'm watching television and seeing him and his crew being burned alive in the worst fuel fire imaginable.  To any true Formula 1 fan, you can understand the utter fear I felt.

The very next night, I dreamed I was at a Champ Car race, and personally witnessed a course worker being hit by a car.  It ran over his right foot, and completely severed it.  I'm watching in horror at a scene too graphically violent for any R-rated movie.  The image of the foot being torn away is still vivid in my mind.

Imagine seeing something horrible on television or in person, and not being able to get the images out.  I was watching the World Trade Center on television as it collapsed and I cried, and that memory is permanent.

Now, imagine equally vivid images, simply drifting into your nightly sleep. 

That's why it's 1:36 a.m. now, and I'm writing.

August 13, 2004... Friday the 13th... Jason's Day

When I was growing up, a teenager in the '80s, the slasher movies were popular.  No series was bigger than the Friday the 13th series featuring a hockey-mask-wearing murderer named Jason.  Every time a new movie in the series arrived in theaters, the next day in school I'd hear "here comes Jason" or whispers of "kill kill kill".

I wasn't really into slasher movies.  I saw one of the Nightmare on Elm Street series, and I only saw the original Halloween movie about two years ago when I was on a Jaime Lee Curtis kick.

Anyhow, it's Friday the 13th again, and I figured I'd post a few bad luck stories, none of which happened on Friday the 13th, just to make you feel better.

First, visit the Friday the 13th Bad Luck page, then go to Amazon and buy a bunch of slasher movies to support SunFyre!

Happy happy day,

Jason... um... I mean SunFyre.

August 11,  2004 ... Paige Davis update

I found a set of Paige Davis photos last month without much explanation as to where they came from.  Well, now we've heard the whole story straight from the source, Paige herself.  She posted this a few days later on the Trading Spaces website. 

Apparently it was a charity event after all.  I decided if Paige Davis was going to flash her butt for charity, the least I could do is link them.  So please visit the Broadway Bares website, and make a donation if it makes you feel good.

Below is Paige Davis' explanation.

Guys, guys, guys!

This is getting way out of control. It reminds me of the fuss over that "scandalous" TV Guide cover!

I open in "Chicago" tonight on Broadway, but I care enough about this charity and about you to answer these rumors myself right away.

The truth is that on Sunday night I appeared as a celebrity guest presenter at "Broadway Bares", a huge annual event which raises money for Broadway Cares/Equity Fights Aids, which (as many of you know) is my favorite charity. As you may recall, I raised $20,000 for them last year in an embarrassing night of "Celebrity Jeopardy"!

"Broadway Bares" is an extremely reputable event, now in it's fourteenth year. Many, many celebrities have appeared as guest presenters, including, (this year) Shirley Jones (Mama Partridge!) , Swoozie Kurtz, and Patrick Cassidy, along with countless Broadway stars. It is not a real "strip show" (imagine!) but a raucous, exciting, sexy Vegas-style revue which has raised millions of dollars to assist men women and children suffering with HIV and Aids.

At this year's event I was given the honor of presenting the "thank yous" to the sponsors at the end of the evening. I was dressed in a very modest, almost demure, yellow dress, cut to my sternum. Yes, I did flip my skirt for a second to get a reaction from the crowd and yes, they went wild. I did collect some money in a pretend-stripper fashion (with my husband Patrick standing right there) from a crowd that was 99% gay men! No one "mauled my breasts"! I kept all of my clothes on at all times. If any TS fans are shocked or offended by the Post's coverage, I would have them consider the source---the Post is known for rumor and exaggeration---and my intentions, which were to raise money for people who are suffering and dying. The good news is that we ended up raising over half a million dollars in one night!

Thanks for watching the show, and for caring enough to come to the website. You guys are the best!

Love,

Paige

If you'd like to see all the photos, including a new one a reader sent me, check out the "Paige Davis from Trading Spaces dancing half naked for money" page.

I still have a little thing for Paige, by the way.

SunFyre