New DU Group: HIV/AIDS Support Group

[Skinner]

The mission of the HIV/AIDS Support Group is to share information and provide support for HIV/AIDS patients, survivors, and their families, and to engage in activism that will promote research and improve the care that HIV/AIDS patients receive.

Click here to visit this group.

Click here to add this group to your My Forums list.

[MuseRider]

1. Thanks Skinner. n/t

[racaulk]

2. Excellent idea, Skinner!

Thanks for creating this forum. :)

[cboy4]

3. This is a great addition. Hopefully those with HIV-AIDS and

others affected by this horrible nightmare are able to take advantage of this new support group.

[pecwae]

4. Glad to hear this group was formed. nt

[terrya]

5. Thank you, Skinner.

We are into the 3rd decade of this horrible epidemic. Too many people have been affected by HIV/AIDS. This forum will be much appeciated.

[flamingyouth]

6. Glad to hear this group was formed.

I know that there was talk about this in the Cancer Support Group. Very glad to see it get off the ground. :thumbsup:

[ninkasi]

7. This is good

Skinner, thank you for adding this group. Before I retired, I lost several friends to AIDS, and each death broke my heart. They were not statistics, they were friends, and watching this horrible disease overtake them was almost unbearable. I'm going to tell about what our office did for one of them, in the hope that other work groups, or church groups, can do the same.

The man I'm talking about wasn't popular when he first came to the office. We didn't know then that he was gay, only that he had a rather abrasive personality, and some people found him too irritating. As the months, and a few years went by, we noticed that he took a lot of time out on disability. Then, he told us what his illness was.

Apparently, the fact that he was gay had made him estranged from all of his family except his mother. Our office was in Houston, Tx, and his family lived in another state. His mother became ill, and was not given long to live. He wanted badly to visit her, but didn't have the money, and the holidays were coming up, and vacation time had already been allocated in advance, according to seniority.

This is what our office did. We held a meeting, without his knowledge, and agreed for the people with the highest seniority to relinquish their vacation weeks, in order to make the week available to him. This required the cooperation of about 40 people. We were unionized, but this we decided without the union's knowledge. Next, we held bake sales, and took up collections. One woman whose husband worked for an airline was able to obtain round trip tickets for him.

So, before his own health declined, he was able to get the time off to visit his mother, and be at her death bed. He had the money to take the trip, and then a whole office who embraced him when he returned. We felt that what we did, while each little thing, be it changing a vacation week, baking a cake or making sandwiches, or giving money, was a small thing, it could make a difference to him. We did it because we knew that he had received a death sentence, and that none of us, until we knew that he was dying, had taken the small amount of time it would have taken for us to get to know him before we knew we were losing him.

When he went out on his final disability, the one where he entered hospice care, the whole office grieved for him. He was a human being, a co-worker, a loving uncle to his nephews, and a loving son to his mother. His father never reconciled with him. The thought that a man can father a child, then turn his back because of his child's sexual preference, was abhorrent to us all. When he died, his was the third funeral of a friend who died of AIDS. When I retired, there were two others who were HIV positive, but did not yet have AIDS.

What more does anybody need to know, except that this disease does not respect sex, age, race, or anything else? It kills our fellow humans, and we are now at the mercy of a fundamentalist president who would rather preach some rather lunatic form of abstinence, rather than stress how people can be protected from contracting, and spreading this killer. Being heterosexual does not protect anyone. There are other ways to spread this disease, and it is a disease, like others, which claims lives, and which should never be politicized, or ignored because some are more willing to point out what they perceive to be moral failings, than to help their fellow man.

We are seeing some of the same cruel rhetoric now regarding the vaccine to protect girls against HPV. We really don't have the luxury of allowing right-wing fundies dictate what health choices are available to the rest of us. Sorry, I'm afraid I went on a rant, and maybe it was wrong. It's just that when even a heterosexual woman like me, who was born when FDR was president can see how short-sighted and cruel our government's AIDS policy, and treatment of GLBTs is, I get on a soapbox and have to be dragged off.

[purduejake]

9. Thank you for sharing...

Glad to see the formation of this group. I am sure everybody will find something to learn from it.

[tblue]

12. Don't ever get off that soapbox! You are a hero and so are your co-workers. What a beautiful story

of the potential for greatness in all of us. I learned a lot from your post, and I thank you for sharing.

[BlueIris]

8. Excellent news.

That's definitely a step in the right direction.

[nealmhughes]

10. As someone who has been living with HIV for two years (officially)

and at least four "unoficially," I just want everyone to know the main thing that people who are living with HIV want only one thing, and that is the same as everyone else: to get on with our lives.

Unfortunately, the current system is set up so that regardless of one's boilerplate statement on "diversity" and "we welcome a diverse group to join our team," it seems that what they mean is "A helper monkey! Great! Look how accomodating we are, the monkey shows it!"

The job gap on one's c.v. or resume is an invitation to be tossed aside, and a honest statement of "Oh, I had a little brain infection and was paranoid and couldn't remember what I was supposed to do next or stay awake due to the 150K counts per ml of HIV in my blood" don't cut it.

Honesty leads to fear, regardless of what potential employers may intellectually know. Fear of contamination, of lost days, of wasting away, of purple splotches, etc. It is ludicrous, but true. One my closest friends and academic colleagues asked me "Why don't you have the purple splotches like Tom Hanks did in Philadelphia?" To which you sigh deeply, and reply that that was the early 80s when KS was rampant and that it is the "stage makeup" equivalent of a villain having a goatee. Remarks such as "You are so brave," or "You are so robust/healthy looking..." are a dime a dozen. Of course, it's because I walk 3-4 miles a day, quit smoking, and don't drink, no magic.

As for bravery, I like to think of it as stubborness. Too many people let a fucking virus take control of their lives. Have you ever heard of someone with diabetes or a deaf person not wishing to go on with their lives?

So, in conclusion, what we (the HIV community) need and want is simple: to work, to not be shunned, and have access to jobs and health care, the same as everyone else. And we don't want anyone else to face this. There are only 3 pills I have to take daily, not too much of a burden at all, really, that is once one's body becomes acclimated to the loose bowels and mental confusion and fatigue first demonstrated on a regimen.

Right now, I have been denied for SSDI twice when I was at death's door when first applying. I haven't earned a cent except for a $300 editing job I did since January 2005. My meds are free from the ADAP program, but entirely beholden to the generosity of the state legislature. I would be homeless, and naked right now, dying in a gutter or under a bridge or in a psych ward, but my family is relatively wealthy and took me in.

So here I sit on top of the hill beside the creek in my little apt. in the carriage house, writing and trying to get my career back on track, doing research for others and waiting for a deus ex machina that will enable me to once again return to my students or else a stroke of karma, but like the doorbell with Ed McMahon with the giant check, it never seems to come!

All this is due to hubris. I assumed, me so smart and well educated and worldly that when I had a "full blood work" at my annual physical exam that it included HIV testing. Wrong. It does not. I wonder how many other people are going around not knowing, not even suspecting...

That is why, if people want to get active in HIV support, they need to barrage Congress, employers, and the general public to correct the present Maudny Money doled out as compensation. Education is the key: for example, if one is diagnosed HIV positive and leaves a job and then gets medical coverage at a new one or on a private policy, the federal law prohibts it being a pre-existing condition if one were covered before. Most people do not know this. They assume that they can't take a financial risk at employing a HIV+ person or that they will always be out on sick leave. Wrong. I to to the doctor to get blood work once every 3 months, then in two weeks or so get the results in person. The whole process takes less than 2 hours, including getting there! My immune system is about a quarter of a "normal" person's, but I haven't been sick in 2 years, save the usual sinus and colds that everyone gets.

Without romanticizing HIV, one can be fairly safe to assert that people living with this virus wish one thing, and that is not to have it; and want two other things: to be treated as humans and not people in statis or quarantine and for noone else to ever have it.

[ninkasi]

13. I hope your wishes are granted

You are a person, and shouldn't be in quarantine, or isolated from the community. I wish, I really, and truly wish, that you were not going through this disease. I wish society were enlightened enough to accept the fact that all of us are, in reality, dying, and that starts the moment we're born. We die of different things, but we all die. Before we do, though, we can contribute to society, and in reading your post, it's obvious that you have a great deal to contribute.

I don't understand why you can't get SSDI, but from what I've heard, it's pretty standard to deny benefits automatically, perhaps in the hopes that the applicant will die before they can receive benefits. Such is the compassion of our government. Your situation is a good example of why we need universal health coverage, like Medicare, but for all. The same party that seems to agonize over every clump of cells, crying to high Heaven about innocent babies deserving the right to be born, are all too willing to write off lives like yours, and it makes absolutely no sense to me.

My wish, my hope for you, is that very, very soon, a cure is found for you, and other HIV positive people. I wish for you the ability to fully live your life, and to contribute what is in you to contribute. In return, I want life to give to you, I want people to drop their absurd prejudices, and let the person you are, not the disease you carry, determine their relationship to you. I want, as you do, for people to become educated, and stop acting as if we were living in the middle ages, and consider illnesses to be illnesses, and not a condition caused by divine retribution, or demonic causes. Most of all, I wish for you to have friends, and a loving family, and hope.

[UTUSN]

11. It could happen to (just about) any of us n/t