Thursday, December 20, 2007

I've had a middle aged moment, and it was nothing - EDS

Those of you who know me personally might be thinking "What is she talking about, she's been having middle aged moments for 5 years now." But I don't mean how my nouns have been flying out of my brain willy nilly, and I don't mean the happy dance my hormones have been having with my serotonin and dopamine.

I don't have to count these things as being caused by middle age, because I can come up with alternative explanations I can choose to believe instead. Lots of cyclical changes in a woman's body impact mood. Stress itself, regardless of age, effects memory's ability to retrieve the exact word one needs at the exact moment.

It could easily, I can say, have been stress that caused me, in the Dr.'s Office, to forget the word for Knee; or at work, the word for Book, or Vacuum, the former being in the middle of a children's talk during Worship, the latter being explained by a pushing motion with one hand simultaneous with a vvvrrrooooooooooo noise until someone guessed vacuum.

But this one can't be blamed on monthly shifts in estrogen or stress-induced mental moments.

I reached into the refrigerator to move the margarine so I could get to the wine, and dislocated a finger. Had to pull it out and everything. Swelling, pain, tendon popping, if not the whole 9 yards, then at least 4.5.

I whined and moaned. It was truly a middle aged moment. Young people don't dislocate fingers reaching for wine.

But then I was reminded of my friend -- Mags, Maggie, Margaret the Incredible -- and how blessed I am to have dislocated one joint this entire decade. When I came out of the closet at Eastern (Baptist) College in 1984, I could count on one hand the students who remained my friend at all, never mind those who were compelled to proselytize or "let you know that I didn't agree with it."

I was honored when Mags and her husband attended my wedding two years ago, doubly honored because of what it took out of her to be able to make the 600 mile trip. She hardly leaves her house, never mind a trip like that, from Virginia to Massachusetts.

See Mags has EDS. People with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The Fancy Medical definition is
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility.
This is a fancy way of saying that her body bends directions it should not and as a consequence her joints frequently fly apart, and her skin is too thin to protect her insides very well, and it's a terrible terrible illness. When she falls down everything comes apart. When she rolls over in bed something can come apart. When she picks up a dinner roll her finger, or elbow can dislocate, when she eats the roll her jaw might dislocate.

I am embarrassed to admit that fifteen-twenty years ago, before she was diagnosed, I dismissively thought she was depressed, or worse, a total woos. I was an uninformed jerk (and not for the last time in my life). I saw her complaining about symptoms of pain that didn't appear to have any cause, laying in bed all the time, and being depressed. And I mentally scoffed. Embarrassing or not, crankycindy will be as honest about herself as she is about hate mongers and bad drivers. I share it because it's a reality, and not uncommon. Remember when we "didn't believe in" things like chemical sensitivity, or gluten sensitivity? Young and judgmental, boy oh boy, sure miss those days. Um hum.

Because of course she was depressed, her body, the encasement for her self, the way she interacted with the world, was a total mess. And it's progressive.

This is her:

80% of people who have EDS don't know it. How 'bout your kids in your congregation? So let your good deed for the day today be to learn about EDS. Because of the internet, we don't need to remain ignorant when people tell us of a set of symptoms, or an ailment, and rarely understood diseases and syndromes are only a couple of links away from awareness.

So I dislocated a finger reaching for the wine. Big Whoop.

Wednesday, December 19, 2007

Huckabee's beliefs based on 1991 CDC recommendations?

(note: this is part 2 of Huckabee's Christmas. If you don't read that first, you may miss the facetious, nay, dripping bitterness with which I pose these rhetorical questions as to whether there is an ounce of possibility that Huckabee might have an inch of wiggle room. While I am confident that he does not, I mean to provide evidence of that fact to you, dear reader, who may not simply wish to believe me because I say so.)

He keeps saying he didn't say quarantine, but that, of course, is what he meant.

In his not-backing-down statement, Huckabee cites

"Also in 1991 the Centers for Disease Control recommended restrictions on the practice of HIV-positive health care workers."

I started trying to remember. What year was that? What did we know then?

I mean, I remember being in an ER in Philadelphia in 1987 and yelling at a PA/Nurse to put on his gloves before he drew my blood.
He said, "What, do you think I have something?"
I said, "How do you know I don't? Aren't you just supposed to just always wear gloves?"

It was a time where those of us involved in understanding the importance of barrier protection in our own community were ahead of the medical community in some ways.

So in 1991, what were they, these restrictions Huckabee cites as a reason to support his desire to

deal with the virus using the same public health protocols that medical science and public health professionals would use with any infectious disease.

So I had to look it up. Oh yes, now I remember. There was a big broohaha about it.

But factually, it was a clear and simple set of recommendations.
They were recommendations, not requirements,
and they were about both HIV positive and Hepatitis B positive health care workers,
and the recommendations were that an HIV/HBV positive provider would not do "exposure prone" procedures without first seeking counsel.

As repeated by the American Academy of Physician's Assistants here

preventing the transmission of HBV and HIV from provider to patient during “exposure prone” procedures. According to the CDC recommendations, providers infected with HIV or HBV should not perform such procedures unless they have sought counsel from an expert review panel and been advised under what circumstances, if any, they may continue to perform these procedures. Such circumstances would include notifying prospective patients of one’s HIV status before conducting the procedure.

It was a big deal at the time -- we were afraid it was part of a slippery slope toward required testing and reporting... who would be the review panel? what would they do with information? was it medically necessary? why weren't they talking about barrier protection instead? why, if a panel said there were circumstances that a professional could do this procedure would s/he then have to reveal his/her personal HIV status?

BUT none of that matter in this moment. The question here is, was this a recommendation that would lead Huckabee to such beliefs? No, it certainly does not meet a standard that could serve as a rational indicator that Huckabee had reasonable cause to believe that HIV fit the category of infectiousness that would lead him to reasonably believe that it was still appropriate to consider

following traditional medical practices developed from our public health experience and medical science in dealing with tuberculosis and other infectious diseases.
So no, Rev. Huckabee can't use that as evidence that he reasonably believed HIV infectiousness raised to that level.

I think he just looked backward in time, tried to find some rationalization for his being nearly 10 years behind in understanding HIV, and came up with a girl who said she got HIV from a dentist, and what are, in retrospect, pretty weakass recommendations.

but that's just me.

Tuesday, December 18, 2007

A Huckabee Christmas

So Mike Huckabee put out a Christmas Ad.
Christ. Christ. Christ.
Or, more accurately:
"Are you about worn out of all the television commercials you've been seeing? Mostly about politics. I don't blame you. At this time of year, sometimes it's nice to pull aside from all of that and just remember that what really matters is the celebration of the birth of Christ and being with our family and our friends. I hope that you and your family have a magnificent Christmas season. And on behalf of all of us, God bless and Merry Christmas. I'm Mike Huckabee and I approve this message."

The Christian Broadcasting Network suggests this is a harbinger of kinder, gentler political advertising.
Others say it's brilliant politics.

What say you?

Also, the floating cross in the background -- subliminal, a trick of lighting, or miracle?

But lest you think my time away has mellowed my crank, there is a huge and elongated cranky bit here.

Huckabee says here that what really matters is the celebration of the birth of Christ and being with our family and friends? Yes, as a private person of the Christian faith, one might celebrate the birth of Christ, and he certainly has the freedom to use his money advertising that.

On the other hand, he isn't just a private person of faith, he's a man who wants to be President of the United States. A man who is desirous of a tremendous amount of power and authority over, among other things, life and death.

You see I, myself a private citizen of faith, celebrate the birth of Jesus, (if not Christ), and would also like to spend Christmas with all of my family and friends. Yet I have names in my address book that are crossed off, that haven't received a Christmas Card from me in a decade or two.* This is due, in great measure, to the fact that HIV research and treatment was underfunded for decades, and they are dead for lack of funds, or medicine, or appropriate mental health care.

So Rev. Huckabee's nice pretty advertisement for faith, family, and friends is merely a reminder to me that he was and continues to be part of a conservative cabal -- yes, cabal -- of people of power who chose not to listen to medical experts, but instead to make decisions based, not on fact and reason, but on belief based in faith.

In particular, although he claims we didn't know much about how HIV was transmitted in 1992, in order for him to be that behind in the facts, he had to ignore not only the CDC in general, but C. Everett Koop, a conservative evangelical who was explicitly clear by 1988 that HIV was not transmitted like TB.

This are Rev. Huckabee's original statements from 1992:
""I feel homosexuality is an aberrant, unnatural, and sinful lifestyle, and we now know it can pose a dangerous public health risk."

"If the federal government is truly serious about doing something with the AIDS virus, we need to take steps that would isolate the carriers of this plague."

"It is difficult to understand the public policy towards AIDS. It is the first time in the history of civilization in which the carriers of a genuine plague have not been isolated from the general population, and in which this deadly disease for which there is no cure is being treated as a civil rights issue instead of the true health crisis it represents."

"In light of the extraordinary funds already being given for AIDS research, it does not seem that additional federal spending can be justified," Huckabee wrote. "An alternative would be to request that multimillionaire celebrities, such as Elizabeth Taylor (,) Madonna and others who are pushing for more AIDS funding be encouraged to give out of their own personal treasuries increased amounts for AIDS research."

This is his first attempt at spinning last week, not backing down:
In the late 80’s and early 90’s we were still learning about the virus that causes AIDS. My concern, as a Senate candidate at the time, was to deal with the virus using the same public health protocols that medical science and public health professionals would use with any infectious disease.

Before a disease can be cured and contained we need to know exactly how and with near certainty what level of contact transmits the disease. There was still too much confusion about HIV transmission in those early years. Recall that in 1991, Kimberly Bergalis testified in front of Congress after contracting HIV from her dentist, and that summer a study was published showing that HIV was transmitted through breastmilk more easily than had been thought. But the federal government provided some guidelines: Also in 1991 the Centers for Disease Control recommended restrictions on the practice of HIV-positive health care workers.

At the time, there was widespread concern over modes of transmission and the possibility of epidemic. In the absence of conclusive data, my focus was on efforts to limit the exposure of the virus, following traditional medical practices developed from our public health experience and medical science in dealing with tuberculosis and other infectious diseases.

We now know that the virus that causes AIDS is spread differently, with a lower level of contact than with TB. But looking back almost 20 years, my concern was the uncertain risk to the general population – if we got it wrong, many people would die needlessly. My concern was safety first, political correctness last…

Sunday on FOX News Huckabee said, still spinning still not backing down: (I guess if you're running for President, it looks weak to say something like, "I was really really wrong, and people died 'cause I didn't use my leadership to actually lead a journey that embraced the continuation of life, and I'm really really sorry." Too much to expect?)

Chris, I didn't say that we should quarantine. I said it was the first time in public health protocols that when we had an infectious disease and we didn't really know just how extensive and how dramatic it could be and the impact of it, that we didn't isolate the carrier.

Now, the headlines yesterday started saying that I called for quarantines, which if you'll go back and read my comments, I did not.

I had simply made the point, and I still believe this today, that in the late '80s and early '90s, when we didn't know as much as we do now about AIDS, we were acting more out of political correctness than we were about the normal public health protocols that we would have acted — as we have recently, for example, with avian flu, which — I spent hours and hours, and months, in fact, as a governor dealing with a pandemic plan that we were looking at which called for isolating carriers if they contracted that disease.

According to The C. Everett Koop Paper Collection online at Profiles in Science at the National Library of Medicine, in 1988
Koop promoted redefining the prevalent scientific model of the disease, from a contagion akin to bubonic plague, yellow fever, and other deadly historic epidemics that required the strongest public health measures--mandatory testing and quarantine of carriers--to a chronic disease that was amenable to long-term management with drugs and behavioral changes.
In 1987 The National Academy of Sciences ran a poster campaign that included this one
(if it doesn't appear below, click the link and open a new tab/window.)

In order to ignore the evangelical C. Everett Koop until 1992, someone running in conservative Christian circles would pretty much have to be listening to fundamentalists, while ignoring evangelical experts. The listening would have to be selective.

Koop himself knew explicitly he had to oppose some of these ideas that Huckabee cites:

"At the 1985 Conservative Political Action Conference, [Paul] Cameron announced to the attendees, 'Unless we get medically lucky, in three or four years, one of the options discussed will be the extermination of homosexuals.' According to an interview with former Surgeon General C. Everett Koop, Cameron was recommending the extermination option as early as 1983."
"Cameron also views AIDS as being such a large threat to 'innocents' that he has proposed nationwide testing for HIV and the forcible quarantine of all those testing positive, either by confinement to their homes or in regional detention centers."
- Mark E. Pietrzyk, News-Telegraph, March 10, 1995.

Huckabee would have to have been listening to anti-gay people like these:

1. The major cause of HIV and AIDS in the U.S. has been and remains male homosexual behavior. The next largest transmission category is intravenous drug use, followed by high-risk heterosexual contact. This last group consists of people who have had sex with anyone who falls into the first two groups. If we eliminated homosexual male sex and intravenous drug use, HIV would be reduced by at least three fourths in this country. Both are unnecessary, chosen behaviors. (Linda Harvey, President of Mission America, cited at Americans For Truth)

By the way, Peter LaBarbera, who has been spreading both exaggeration and overt lies about GLBT people in general and Gay Men and Men who have Sex with Men for years and years, praises Huckabee for his original statement:

"Mike Huckabee is right to reject the liberal media's talking points on homosexuality. We need more -- not less -- debate on why HIV/AIDS has been singled out as a politically protected disease, and why it gets such a huge percentage of taxpayer funding vis-à-vis other diseases."

"Despite the obvious link between male homosexual behavior and AIDS, gay bathhouses where men go for anonymous sodomitic encounters with other men are flourishing in cities like Cleveland and Chicago. If homosexual and AIDS activists – and public officials -- would work to close these disease-spreading centers down, it would protect the lives of homosexual men and also women who unknowingly get infected by male spouses who secretly engage in homosexual perversions."

LeBarbera comes from a long line of fundamentalist Protestant and ultra-conservative Catholic people whose anti-gay rabidity overwhelmed their sense of right and wrong, truth and falsity.

Huckabee likely listened to the ex-gay/anti-gay people who were held up by "ex-gay" organizations like Love in Action, promoted by conservative political organizations as proof that AIDS was God's judgment and therefore not worthy of secular intervention. This is a "testimony" that inextricably links the "homosexual lifestyle" and AIDS.

An aggressive, outspoken and highly intense person, Paul wholeheartedly gave himself to whatever cause he was pursuing. During his time with Love In Action and Church of the Open Door (San Rafael, CA), Paul immersed himself in ministry and made deep impressions on all who knew him.

But when his desires to go back to his old lifestyle would overcome him, he would disappear. Two or three times, he came back to the Lord for a brief period.

In 1984, Paul visited our director, Frank Worthen, at a time when he was thinking of returning to the Lord. Frank shared with Paul long into the night, warning him about this "new" disease striking homosexual men.

Paul went home, promising to consider what Frank had said. The next day, he called Frank to tell him of his decision: He was going to stay in his homosexual lifestyle.

About two months before his death on July 15, 1985, Paul made his final return to the Lord. Although he was physically diminished from a half-year's battle with Kaposi's Sarcoma, and other infections, God used Paul in some exciting ways. Right before he was hospitalized for the last time, Paul wrote a small paper on AIDS and brought it to the LIA office. While he was in the hospital, one of our staff typed up his paper on AIDS and made copies.

Our director's wife, Anita, brought them to Paul, and he enjoyed handing them out from his hospital bed. What follows is a copy of Paul's paper on AIDS...

"For his anger lasts only a moment, but his favour lasts a lifetime; weeping may remain for a night, but rejoicing comes in the morning" (Psalm 30:5).

AIDS has become the world's number one health crisis, and the medical facts point to the epidemic becoming much worse before it improves.

LIFE magazine had an article on AIDS in their July, 1985 issue which said: "AIDS is an epidemic that may change the way America lives."

Why has AIDS become such a problem? Are we supposed to be learning something from all this? Let's take an honest look at AIDS from a Christian viewpoint.

The AIDS epidemic is the result of sexual sin, homosexual and heterosexual. We cannot escape the fact that God has allowed certain afflictions to befall his creation throughout history.
Or this M.D. and Ministry student writing in the Journal of Biblical Ethics in Medicine:
In this author's opinion it is beyond reasonable doubt that AIDS is a manifestation of divine judgement and that practicing homosexual men are, among others, the present objects of God's wrath. Further, the failure to recognize God's disposition of judgement in this major event in the history of the world is to fail to recognize a significant aspect of its meaning. The large number of people in the United States with AIDS and even larger number with HIV infection are of a "staggering proportion." The majority contract the illness through ungodly "high-risk" behaviors, especially homosexual intercourse (as well as IV drug abuse). While homosexual behavior is itself a present manifestation of divine wrath through God's judicial abandonment to shameful lusts, AIDS is a further manifestation of divine retributive judgement resulting in suffering, disease and death ....As frightening as it is to suggest, AIDS is probably also a purificatory judgement through which God partially cleanses His fallen creation. Before the fall He ordained, in the context of monogamous marriage, heterosexual intercourse as the only legitimate expression of a union which meets, at the most intimate level, our need for human companionship

So you see, dear people who put up with my crankiness all this way,

Huckabee didn't just "not know" about HIV, he lived, and expressed political leadership, in a religious context that explicitly blamed and demonized Gay men for it. He made decisions about where to get his information from, and what sources to ignore. There was no medical confusion about HIV that would lead to any anyone who paid attention to the facts to make any sort of comparison with airborne, easily transmittable viruses like TB.
In the medical, and scientific world, there was no confusion.

So if Huckabee, in 1992, still had any concern that HIV was the kind of virus that might call for extreme community protection measures, it was because he chose not to ask people who actually knew.

I loved our last real evangelical president, Jimmy Carter. I would be happy with an evangelical president who understands the limits of faith in determining public policy. But I certainly don't want a President who chooses to listen, not to evangelical Surgeon Generals, but to the haters in his own, small community.

And here's a funny - Blogger thinks that demonized isn't a word.

*(I note here that I'm not counting people I just haven't sent cards because I am really really bad at sending cards.)

edited after some sleep 12/19/07.