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I give up! Jonathan and others, this is shocking!

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read this article to know what will have to 20% of us in our old age (even if we successfully keep the virus low by taking HAART) and I think you will change your mind.



Interesting you should find this, and place it here.  My doctor, nurse, and my partner are all of the understanding that if this nature of imparement happens to me, then the pills need to be prescribed, and dispensed.  I will not place this kind of burden on the ones I love, only to stay here as a "veggie".


In Love.

More then ever, I feel that I have not been forceful enough with my ranting posts about activism, funding, and the growing apathy I witness within the HIV infected community.

One by one, over the years, I have seen people go from pie-eyed parrots of the health system,  to beaten and battered veterans of the reality that is HIV.

And in the end, I am called a downer for bringing up the salient points. Or worse, accused of flame bait.

Sometimes I sorta want to give in. Not say anything. Let the people find out for themselves. Gloat a little, when the same doctor who tells someone that perfect adherence = perfect treatment has to pile on prescriptions for PN, or has to explain why "perfectly" administered treatment sometimes fails.

Sometimes I get a mean streak, and wait for the day when the arrogant and dismissive attitudes towards those who have weathered this pandemic turns into that stunning, awful moment of clarity. When they see we were right.

When they see that liberties and support ssytems WILL vanish if we don't maintain them with the vigilance of true activists. Such activism is not always pretty. Sometimes we poke a stick into the nest. Sometimes we use the F word in polite company. Sometimes we make enemies. I am certainly not saying that everyone has to do all that. But there's a real sense of shooting the messenger here.

I was appalled and disgusted by many of the responses to my Zephyr thread in the Clinical Trials section. Notwithstanding the fact that I was totally accurate in my assessment of the situation, but rather than discuss the situation, several members took it upon themselves to attack me, with lies and half-truths. I lost a few online "friends" over that one. Or rather, I discovered that I had fewer friends than I thought, all along.

But here's the thing. While we pick apart one another, while we sit by and idly sip our coffee and watch Survivor, there are people who are HIV infected and affected who are making great sacrifices to find cures, to protect our status, to stave off the erosion of privacy and support that our government has perpetuated in the last six years.

I said it a LONG time ago, in one of my first blogs. And I reiterate it again because it has yet to prove invalid. Those who have not been directly and devastatingly impacted by HIV infection are far more likely to be submissive to the healthcare system, more likely to be dismissive of the long term survivors, and are far more offended at having their worldview challenged insofar as the nature of this pandemic.

The awful thing? These are the people with the PHYSICAL STRENGTH to stop these injustices, to FUND the worthy research initiatives, to ACT.

How many HIV activists type their messages, write their letters, share their perspective from the bed, or the toilet? Too fucking many.

We will end up losing Ryan White, that much I know. And the loss of medical help will be first felt in the poorest, the least educated, the sickest. Minorities, women, drug users, incarcerated people will go first.

Women with HIV will be next, regardless of race. Because HIV impacts females to a far greater degree than males, because we still live in a society that sees female as less than male. Because there will be no incentive for an employer to maintain the cost of HAART for a female, to the detriment of the entire company.

Gay guys, ironically, will survive longest, probably, since they have more disposable income and fewer stressors than people with children. But as HAART fails, and their jobs - with related benefits - become endangered, they too will start to wonder where the safety net went.

 Surely, they say, someone has been doing something.

And in the meantime? Names reporting for the infected (with true govenrment-level privacy). Databases and incarcerations and all the things that Rep. William Dannemeyer salivated so strongly for in the mid 80s.

And as HIV becomes declassified as a terminal illness, it becomes more and more difficult for the people living with it to qualify for and maintain the help they need.

But its already happening, isn't it? For every fraud that comes along pretending to have HIV, there are a dozen people who are really sick who don't have the strength to fight for benefits or support. For every incarceration of a "horrible bitch" who intentionally (maybe) infects someone, there will be three people destrpyed by vindictive ex-partners or spouses.*

And we are letting it happen. More than that, we push aside good people who are trying to help stop it.

The pot is steaming, my fellow froggies.

But don't listen to me. I'm being a downer.

* and that isn't just my opinion:

“One can easily foresee a spate of 'shakedown' or vengeance lawsuits brought by plaintiffs whose motivation is not so much to discover how they contracted HIV as to force lucrative settlements or embarrass a former sexual partner by exposing that persons sexual history in the guise of obtaining relevant discovery,” (Dissenting Supreme Court Judge Carlos) Moreno wrote.

sure is comforting to know that hiv is manageable.


--- Quote ---Self Management and the Chronic Care Model
--- End quote ---
I actually think that term might be appropriate and actually prefer it to calling HIV a terminal disease.  To me terminal disease is reserved for diseases where you are almost certain to die from the disease within a very short period of time, (e.g., an inoperable brain tumor that the doctors estimate will kill the patient in 6-9 months).

Healthcare should be about empowering patients to be active in their treatment.  HIV treatment encompasses so many facets including case management, care coordination across multiple doctors/specialists, ensuring continued access to quality (and more importantly competent) healthcare and most importantly active patient participation in healthcare (read doctor visits every 3 months).  And these factors last for as long as the patient is alive.  To me that is the very definition a chronic illness.

Of course there are varying levels of diseases that may qualify as a chronic illness, but for me its not about comparing these diseases.  It's about ensuring everyone with HIV has access to life-long, uninterrupted quality healthcare.  If changing to model of treatment from one of acute to one that encourages proper case management, coordination of services/care and access to quality healthcare then so be it.  At the end of the day, it's not the term that I care about, it's the real live healthcare that I receive that is much more important.


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