Being Diagnosed HIV +

A on-going story/log of my treatment and experiences being diagnosed HIV positive.

Thursday, July 21, 2005

Benefits Of AIDS Research Not Limited To One Disease

Reposted from The Desert Sun
Article by Allen Reese
Special to The Desert Sun
July 17, 2005

Remarkable progress has been made in recent years in our understanding of the causes and treatments for a wide variety of diseases. The potential opportunities offered by these scientific findings may hold the promise of a cure for heart disease, cancer, Alzheimer's disease and more.

We are fortunate to live in a time when the National Institutes of Health (NIH) has made the astute decision to fund AIDS research into new drugs, treatments and prevention. It may not be widely known that this very research is also benefiting many other diseases.

According to an article published by amfAR (American Foundation for AIDS Research) in July 2005 titled, "The Broad Benefits of AIDS Research: An Update," by Jeffrey Laurence, M.D., "It (AIDS research) has already led to a new drug for hepatitis B, the leading cause of liver cancer worldwide; for hepatitis C, a rapidly emerging, additional cause of chronic liver disease; and possibly for liver cancer. And it promises a great deal more."

In his article, Dr. Laurence quotes "Cancer and AIDS," published in The Scientist by A.J.S. Rayle, noting that "HIV/AIDS research has blazed trails empirically, politically, and even philosophically. Since this disease took hold new insights and understanding in immunology, antiviral research, vaccine development and gene therapy have emerged from HIV/AIDS research laboratories and crossed over to cancer research," as well as to many other fields.

In addition to hepatitis, AIDS research has benefited breast cancer, autoimmune diseases, Alzheimer's and heart disease:

According to Dr. Laurence, one promising experimental therapy for advanced breast cancer is high-dose chemotherapy, followed by a bone-marrow transplant, which may lead to devastating, even fatal, opportunistic infections.
These conditions are common in AIDS too, and new drugs against these infections have come directly from AIDS-targeted research. Treatment for Kaposi's sarcoma is also being tested in bladder, vulvular and colon cancers.

HIV-positive individuals often develop evidence of an autoimmune problem, such as a lupus-like blood abnormality. Treatments developed in the context of AIDS, Dr. Laurence states, should be directly applicable to the same conditions when they occur spontaneously.

As with Alzheimer's disease, profound dementia is an important component of AIDS in its late stages. Dr. Laurence notes that HIV can cause dementia through a process of cell injury or programmed cell death. Drugs that are successful in improving nerve damage and dementia in AIDS may have similar effects in Alzheimer's. The characteristic plaques that fill the brain cells of Alzheimer's patients are formed partly by proteases - and so scientists are investigating the use of protease inhibitors, a widely prescribed family of AIDS drugs, to treat this debilitating dementia.

Similar to the cell damage in Alzheimer's disease, it appears that HIV infection injures the cells that line the small blood vessels of the heart. Dr. Laurence points out that this same injury occurs in HIV-negative people with atherosclerosis, where its origin is thought to be certain infections of the blood-vessel wall. Thus, the discovery of the means to block the cell damage process may not only benefit those with AIDS, but everyone.

Desert AIDS Project supports research in all fields of medicine, certainly not exclusively in HIV/AIDS. Sadly, there are no bounds to human suffering. Indeed, many AIDS patients, especially those who are fortunate enough to have lived into their retirement years, are afflicted with the same illnesses that HIV-negative individuals suffer from.

The hope for future generations lies in continuing medical research. Desert AIDS Project joins with the medical community at large to support funding decisions at the government level, with the hope that not just HIV/AIDS, but cancer, heart disease, Alzheimer's and other illnesses, will be eradicated in our lifetime.

Allen Reese is chief executive officer of Desert AIDS Project in Palm Springs.

Local Gay Men Taking More Risk, Study Says

Reposted from The Arizona Daily Star
Article by Carla McClain
July 18, 2005

No longer deathly afraid of the virus that causes AIDS and yearning for a more carefree lifestyle, many gay men in Tucson once again are risking unsafe sex - a trend blamed for rising HIV-infection rates.

Also throwing fuel on this fire is the growing use of crystal methamphetamine, widespread use of the Internet to find multiple sex partners and a deep fear of aging and loneliness, a landmark study of the local gay community has found.

Surprising to many is the finding that high-risk sexual behavior is occurring mostly among older gay men - those most familiar with the true horror of AIDS - who buried and mourned so many friends during the early years of the AIDS epidemic two decades ago.

Those who should know better, as some say.

"I know how painful it was to care for someone with AIDS in those years. Back then, we lost as much as 80 percent of our social circle," said Floyd Meeks, HIV prevention coordinator for the Pima County Health Department and a leader of the study.

"So, after that experience, you have to ask, why are men in their 40s still getting infected? What is going on here? For a long time the 'safe sex' message worked, but at some point it stopped."

In fact, today, the thinking among many older gay men is that contracting HIV is acceptable. New and effective antiviral drugs will keep them alive at least until age 60, a decent lifespan, they told researchers.

Noting the extreme emphasis on "youth and beauty" in gay culture, the study found: "Many say they simply did not want to live beyond 60 years old … due to the pervasive belief that older men are not sexually attractive or valued. It would not be a tragedy if a man becomes infected with HIV in his thirties."

As Meeks put it: "No one wants to be the last old queen left on the dance floor. The rejection, the loneliness is such a fear."

These changing, and obviously dangerous, dynamics in gay culture have emerged in a federally funded study of 40 U.S. cities, including Tucson, exploring why HIV rates have started rising in the last five years.

The Tucson study was conducted in 2003 and since has emerged as one of the top six studies of this issue now cited by the U.S. Department of Health and Human Services.

The unexpected increase reverses a decade-long trend of falling or steady infection rates after AIDS was identified in the early 1980s, when it was almost always quickly fatal.

While most U.S. cities have targeted minority populations as the site of the increase, in Tucson the problem remains centered among mostly Anglo gay men - or "men who have sex with men (MSM)," a classification the study uses to include also married or bisexual men who shun the "gay" label.

Although MSM account for only about 5 percent of Pima County's population, they comprise nearly 60 percent of those currently infected with HIV, according to state figures. And within that group, some 70 percent are aged 30 to 50.

"We tried to understand what is going on in this group. We wanted to know where we can intervene to change what's happening," said Halley Freitas, a local medical anthropologist who designed the study. It included interviews with 300 male members of Tucson's 11,000-strong gay community as well as surveys, focus groups and observation of gay hangouts.

"The answers are very complex," she said. "Nothing is simple when you are trying to understand what motivates people to make sexual decisions."

The answers also are unsettling to those fighting to hold on to hard-earned, and now endangered, civil rights for gays.

"Some of the findings in this report may be used as proof that gays lead an unhealthy lifestyle, so they must be denied their rights," said Kent Burbank, executive director of Wingspan, Tucson's community center for the gay, lesbian, bisexual and transgender population.

"Is it true, what the study shows? Yes. There is a cohort of gay men who do lead unhealthy or unsafe lives. Crystal meth is a huge problem now. But there are hundreds of gay men coupled up and leading very moral lives, and no one will read about them. Instead, this may be used to inflame bigotry and violence against gays."

Meeks pointed out that infection rates "are being fueled by a small percentage of men who are HIV-positive and continue to be sexually active."

"The vast majority do not want to give this virus to other people, and they actively try not to," he said.

But many admit - and the study documented - a growing feeling of "condom fatigue" among gay men, after so many years of hearing that condoms and monogamy are the keys to staying healthy. It signals a deep weariness after years of vigilance and restraint trying not to contract AIDS.

As one unidentified gay man stated in the report, "Let me just become (HIV)-
positive, start my drug regime and then I can enjoy my sex life like I used to when I was young. A lot of older guys are tired of worrying."

"Condom fatigue" was one of the top three reasons why MSM are taking sexual risks now, the study showed. Also cited were drug abuse and the "belief that treatment is an easy option."

But this whole idea that popping a few daily antiviral pills is an easy price to pay for unsafe sex is woefully misleading, said Scott Davey, with the Southern Arizona AIDS Foundation.

"The regimens are complicated, and the effects often don't last," he said. "You might have to try dozens of drug 'cocktails' before finding one that works.

"And the side effects can be devastating - horrible diarrhea, fat deposits forming on the body," he said. "The drugs may keep you alive, but there is nothing easy about them."

Along with new medicine has come new technology that allows more risk-taking, most notably the Internet, where MSM can cruise dozens of Web sites to find willing sex partners.

Favored by more than 50 percent of those in the study, it was described as "convenient … like going shopping." "It's almost like having a pizza delivered," one man said.

In Tucson, about 25 percent of gay men suffer such severe addiction, depression or other psychiatric problems that they will never be persuaded to change their sexual behavior, Freitas said. Another 25 percent are completely safe - not taking risks, staying HIV-negative.

"But for about 50 percent, the right message in the right place can change lives," she said.

"This is a prime opportunity to reach them."

Contact reporter Carla McClain at 806-7754 or at cmcclain@azstarnet.com

Wednesday, July 20, 2005

The Changing Face of Aids, Part I & II

Reposted from The Leavenworth Times
Article by Connie Parish, Times Staff Writer
July 19, 2004

Ten to 15 years ago, people were dying with AIDS.

Today, says Blaine Saunders, social worker and HIV/AIDS coordinator at the Leavenworth County Health Department, the main emphasis is on people living with the disease.

While in many ways that's a "godsend," Saunders said, there are also down sides to this change.

It could lead to complacency when it comes to avoiding the high-risk behaviors that lead to the disease. And while funding, primarily through the federal Ryan White Care Act, remains level, with more people living, that leads to shortfalls, he said.

"We have over a million people in the United States living with HIV/AIDS," Saunders said, more than ever before.

But the level funding has led to shortfalls in money for medications, which he said can be very expensive, as well as in other areas. Several Web sites put the cost for medications as much as $10,000 to $12,000 annually.

"Our goal has always been to decrease the number of deaths for people living with AIDS," Saunders said.


Medical advances account for the longer life span, and Saunders said researchers don't yet know just how long those with AIDS can reasonably live.

And researchers are close to the goal of treating the disease with just one pill a day, compared to as many as 15 to 20 a day a scant decade ago.

"Now they can combine several different AIDS medications into one pill and it's not uncommon now to take two to three pills a day," Saunders said.

What the medication does is reduce the amount of virus in the body, which determines how infectious the person is, and how healthy the person feels.
There is still no cure, and Saunders doesn't expect to see one in his lifetime. A more realistic goal, he said, "has been to treat it as a chronic disease."

And with the advances in medication, some people living with AIDS and heading toward the end stage were able to reverse the process. They've actually become healthier.

But many of the medications have serious side effects that HIV/AIDS patients have to live with. They can include chronic diarrhea; fatty deposits on the back of the neck, for example; an extended abdomen; or nerve damage. Some people suffer more side effects than others.

"Don't think for a minute that you can take a pill and everything's going to be OK," Saunders warned. "These are powerful medicines."

And it's a regimen that must be followed for life.

That means no "drug holidays," no skipping, no forgetting to take it.

Often the virus will no longer respond to the medication after such lapses; often mutant viruses evolve, creating the need for a different combination of medications.

Some people have had to try so many different combinations they've almost run the gamut, Saunders said.

A point that can't be emphasized too much is that "AIDS is still a pandemic," Saunders said. "It's still growing. There are continuing to be significant numbers of people infected by HIV."

The Centers for Disease Control estimated there were about 1.1 million cases of people in the United States living with HIV in December 2003. About 40,000 new cases are reported each year.

Continued Article - Changing Face of Aids - PART II


AIDS is no longer a young white gay man's disease.

Though that might have been the case when the disease was identified in the early 1980s, the face of AIDS is changing, according to Blaine Saunders, social worker and HIV/AIDS coordinator for the Leavenworth County Health Department. His position is funded through the federal Ryan White Care Act.

Today, Saunders said, "We're seeing more racial and ethnic minorities, more women and the poor."

Statistics tell the story. In 1985, women represented 8 percent of those with the disease in the United States. In 2003, that number jumped to 27 percent. And between 1999 and 2003, 15 percent of the new diagnoses were in women.

"What's striking is that 67 percent of the new cases are African-American women," Saunders said.

Though those are national figures, the local trend is similar.

"In Wyandotte and Leavenworth counties, 41 percent of the new cases were African-Americans," he said.

And in 79 percent of the women, "the transmission was through heterosexual contact," Saunders said. Nationally, that figure is 71 percent.

Worldwide, the percentage of HIV/AIDS cases is even higher for women -- 51 percent.

WOMEN OF COLOR

Why is the disease spreading so fast among women and especially women of color? Several factors are at work.

"One is that African-American men who are gay will have more of a tendency not to 'come out,'" (reveal their sexual identity), he said.

Cultural issues, including families, church and peer pressure, are all involved in this unwillingness, because it's just not accepted, Saunders said.

And there's a related issue. The incarceration rate for young black males is also disproportionately high, about 50 percent. And men who may not consider homosexuality their sexual identity may get involved in such activity while incarcerated, though he cautioned that's not to say sex is rampant in prisons.

When they get out, "they go back to their wives or girlfriends," and unknowingly transmit the virus to them, Saunders said.

In state prisons, for example, inmates are initially tested for HIV/AIDS; after that, tests are voluntary

HIGH-RISK BEHAVIORS

Add to that the fact that those who end up in prison are more likely to have been involved in high-risk behaviors. About 20 to 25 percent of the infections involve IV drug use and sharing needles, he said.

Still another reason, Saunders said, is that "in the community of color, there is distrust of the health care system."

Conspiracy theories exist concerning HIV, "that the government planted it here, that HIV does not lead to AIDS, that it's a government experiment gone wrong," he said. Some remember the Tuskegee Syphilis Experiment.

President Bill Clinton, on May 16, 1997, apologized to the eight remaining survivors of that U.S. Public Health Service 40-year-long experiment. According to several Web sites, including www.infoplease.com, the U.S. Public Health Service, between 1932 and 1972, conducted an experiment on 399 black men in the late stages of syphilis. These men, for the most part illiterate sharecroppers from one of the poorest counties in Alabama, were never told what disease they were suffering from or of its seriousness. Informed that they were being treated for "bad blood," their doctors had no intention of curing them of syphilis at all.

Because of these conspiracy theories, those in the African-American community may be less apt to believe the prevention messages or to seek out health care.

THE POOR

The poor, too, oftentimes don't seek health care. Those who are impoverished may be more concerned about "financial issues, drive-by shootings, paying the rent or unemployment," Saunders said, so AIDS prevention is not a top priority.

There's also typically a correlation between poverty and substance abuse, which he attributes to hopelessness and frustration. Excessive alcohol or crack cocaine use can impair judgment, which can lead to the kinds of high risk behaviors associated with the HIV virus.

The Kansas Department of Health & Environment had documented 75 cases of HIV/AIDS in Leavenworth County by the end of 2004. Saunders figures it's closer to 80 by now.

LOCAL CASELOAD

His caseload runs from about 15 to 20 people, some of whom he's seen for as long as 10 years. The demographics he's observed, in terms of gender, race and age, are consistent with the U.S. trends. Most of Saunder's clients are in their 30s, with some in their 40s and the youngest 27.

The Leavenworth County figures do not include the cases in prison, where he said the HIV rate is typically five to seven times as great as in the general population. He does make visits to the prisons, he said, but only when those with the disease are ready to leave. Saunders said he helps them find services in the area where they'll be living.

HIV+ Man Jailed For Having Unprotected Sex

Reposted from Yahoo News
Article by Christopher Curtis, PlanetOut Network
Tuesday July 19, 2005

A medical student in Atlanta faces felony charges for having unprotected consensual sex without telling his partners his HIV status.

Police say that in April 2004, Garry Wayne Carriker, a 26-year-old fourth-year medical student who had graduated from the Air Force Academy, had already been dating John Withrow for five months before he revealed he was HIV-positive.

Withrow decided to press charges. "The reason I came forward to file a complaint was to stop him from victimizing someone else," he told the Associated Press (AP).

Carriker posted bond, but was then accused of having unprotected sex with two other men in Atlanta's Fulton County without telling them his HIV status.

Superior Court Judge Johnnie Caldwell Jr. revoked Carriker's $5,600 bond. He now faces three counts of felony reckless conduct.

If prosecutors can prove Carriker knew he had HIV during the alleged encounters and did not warn his partners, he could spend up to 10 years in prison.

While the felony reckless conduct charge is rarely used, some in the gay community think it's the best way to handle a health crisis.

"Since Carriker is not accepting responsibility for his own health status, perhaps the law is needed to protect others," Chuck Bowen, the executive director of Georgia Equality told the PlanetOut Network.

Joel Ginsberg, interim director of the San Francisco-based Gay and Lesbian Medical Association, says the prosecution's plan could backfire.

"From a public health perspective, the most important thing is that both sexual partners, not just the HIV-positive one, take responsibility for preventing infection," he said. "Criminal prosecution could undermine public health if it discourages testing."

According to the AP, Carriker's arrest has sent a jolt through Atlanta's LGBT community. One activist launched a Web site devoted to the case, listing the clubs Carriker frequented and urging those who may have been involved with him to get tested.

"It's really amazing to me that, in this day and time, people would have unprotected sex," said Bowen. "I think it demonstrates that both partners need to be honest about their HIV status."

We Must Not Let Protestors Derail Trials of Pre-Exposure Prophylaxis for HIV

Article reposted from RxPg News
Jul 19, 2005, 14:02


By PLoS Medicine, One of the great tragedies of our times is the extent to which HIV prevention efforts are falling short. In 2004, more new HIV infections occurred than in any previous year: close to 14,000 a day, 570 per hour, almost ten per minute. The greater part of new infections occurs in young people, over half in persons between 15 and 24 years of age, and over half in women. The increasing feminization of the HIV/AIDS epidemic reflects the vulnerable position of women in many societies [1]. HIV is a virus, but inequity is at the roots of most of its spread.

Condoms are highly effective at preventing sexual transmission of HIV, but only if they are available and used [2]. Even if the former is the case, women are often in a difficult position to negotiate use by their male partners [3]; this applies to female as well as male condoms.

In the absence of an effective preventive HIV vaccine [4], which is felt to be the only tool that can definitively break the epidemic, there is thus great need for alternative prevention technologies, especially those that can be “female-controlled”, i.e., use of which does not require consent of the male partner. Other vulnerable populations might equally profit from the availability of such interventions. The urgent need to develop female-controlled prevention methods explains the thrust to develop vaginal microbicides [5,6], and the more recent interest in using an antiretroviral oral pre-exposure prophylaxis (PREP), for which proof of concept has come from preventing mother-to-child transmission via breastfeeding [7].

Mills and Singh have written an informative and thoughtful essay for PLoS Medicine on the recent interruptions of several tenofovir PREP trials, instigated predominantly by activist groups, including Act Up–Paris [8]. They properly describe what has happened in the countries concerned, and, at least initially in their essay, they do not seem to be afraid of identifying culprits, albeit in an indirect way. For example, they say, “while freedom of expression is a cherished ideal, protest should be carried out in a responsible manner”, and “speculation, unwarranted criticism, overreaction, or sensationalizing facts risks stigmatizing tenofovir”. But I feel that in the end, the authors could have gone further in their criticism of the protestors who derailed the tenofovir trials and in their support for the trial investigators and sponsors.

The fear or trepidation about making a correct diagnosis, or being outspoken about the correct diagnosis, is in this case, as in most other circumstances, counterproductive and may even lead to more harm being done. The fact of the matter is that the investigators of the tenofovir trials did consult intensely with community groups concerned, but this consultative process obviously did not include every activist group in the world.

As Co-Chair of last year's XVth International AIDS Conference in Bangkok, Thailand, I became painfully aware of a structural flaw in the system of dealing with the activist community. The governing body of the conference, the Conference Organizing Committee, included three international and one local Community Co-Organizers, who were supposed to have a mandate to speak on behalf of the national and international AIDS community. In the end, though, it turned out that agreements on limiting disruption of speeches and destruction of property, which took endless hours of discussion and which were communicated to attendants, governments, speakers, and sponsors, could not be honored because certain activist groups simply ignored them. Likewise, in clinical research, investigators may end up in situations in which they may have had an intense dialogue and come to an agreement with what they have identified to be the relevant community organizations, and yet a day later are put on the stand by yet another activist group.

Life would be simpler if there were an umbrella organization with undisputed leadership among AIDS activists that was mandated to speak and act on behalf of this community; somewhat like labor unions in their heydays. But we are far from that.

Activist groups have now managed to derail several PREP trials, arguably the most important studies for those at high risk of acquiring HIV infection around the globe. Similarly, activist groups have endangered the funding and therefore the continuity of the International AIDS Conference (the only global forum about HIV/AIDS where researchers, health-care workers, community, activists, drug manufacturers, politicians, and leaders from all walks of life meet). And lately activist groups have prevented clinical trials with the promising and highly needed new class of CCR5-receptor-blocking antiretrovirals from proceeding in several European countries.

The methods of these specific activist groups are uninformed demagogy, intimidation, and “AIDS exceptionalism”, the last in the sense that they exploit their HIV-positive status to get away with behavior that would not be accepted from others. Within the international AIDS community, such form of activism is only practiced by a tiny minority, but it has taken us hostage. Those who will suffer the most from the misguided ethical imperialism that derailed the PREP trials do not live in Paris, but as usual in Nairobi, Johannesburg, Phnom Penh, and Calcutta.

There is no other area of medicine where activism has been so strong and has accomplished so much as in the HIV/AIDS field. Let's be just a little brave, and stand up to protect that legacy.

Finally Back to Normal Life???

July 18, 2005

Alright I'm happy to report that finally after pulling teeth my disability was finally approved by the state of Florida IT IS UNBELIEVABLE but true. I received notice on June 23rd that my SSI was approved and it stated I needed to go into the SSA office to fill out some paperwork (yes there is even more red tape once you've been approved). I was told that I would receive an SSI payment during the first week of July, and then in August my disability would actually start, and someplace between the two I would receive my retro-active payment.

Low and behold on June 30, I got my first SSI check, and once again I consider myself SCREWED by the government but none the less I'm happy to know that things were approved, and I'll be even happier once I get my lump sum settlement.

So with that known, I started looking for a place to rent so that I will once again be on my own. I was becoming extremely discourage in my efforts being dragged around from crack-hood to crack-hood and being told that the rent was going to be no where near would I could actually afford. I thought jesus christ have rents sky rocketed that much?? -

Just as I was about to give up hope, I went on one of my "drives" in attempt to find something that may not have been listed in the papers. The past couple of weeks when doing this I would always drive by my old neighborhood which I loved, so of course (even though I had just been by there a week or so ago). It was the first area I decided that I would drive through. Don't you know right there on the same block, 2 houses away was a rent. I called the landlord up and was able to look at the place. Best thing is, it was definitely in my price range.

I immediately ran by and met with Kristopher Fegenbush over at Center One (formerly APFL) and discussed my options. I was scared that HOPWA would only cover my portion and not consider my partner and myself a "couple", but I had already figured some help was better than no help, after all push comes to shove I'd foot the bill for the entire move on my own however if I was able to get the assistance, then it would be best. The paper work was submitted on Wednesday of last week and sure enough Kristopher called me first thing Monday morning to let me know we had been approved. He called back a couple of hours later to let me know Hopwa had done their inspection and we could go ahead and make arrangements with the landlord to start moving in when we wanted too.

As my disability has been approved, of course it would just coincide with the recertification of all my social services (food stamps, medicaid etc), so that is falling in my shoulders and making things a slight bit hectic but it's much better than when I had no services, at least things are done where there isn't a break in coverage.

This coming week I'll be moving into my own place therefore I will be away for a little bit however since things have been set up, and I have hardly been making updates to this blog, being as there isn't stuff to cover on a daily basis and eventually I will tie this blog in with Postransitions.org I figured now would be a good time to start using the blog to post news articles I find out about on the net. So that's what I'll be doing in the future with this blog.

Thursday, June 02, 2005

Long Overdue Update

This update has been long overdue, and it goes without saying that I've just been very overwhelmed with different things, first let me say that as far as my health is concerned we've had a few swings backwards and many swings forward so all is well on that front, I've been placed on a different combo of drugs since my last posting due to Kaletra not being to cholestrol friendly, so now I'm on Norvir, Reyataz, and Truvada.

My last set of labs were just done 2 weeks ago, and my viral load had gone done to 209, and my cd4+ had gone slightly up from the last set of labs and were at 202, Prior to this my cd4+ cells had dropped to 171 (lower than when I was originally diagnosed), but at the time I was battling with a little bit of a cold which would have lowered them and Dr. Heglar was pretty much pleased with the knowledge that my cd4 % had risen, which indeed from my understanding is a good indication that my immune system is slowly becoming more healthy. I was honestly surprised at my last set of labs, because I have missed quite a few doses here and there. I try my damnest not to let this happen, but with never-the-less it has happened and although there were a couple of times when I was just mad at the world, upset at myself and searching to inflict damage upon myself so they were deliberate acts, (I had also known at that point that I had always been extremely adherriant to my regimen. It seems as though as more and more time passes the easier it is to get overwhelmed and miss doses of medication.

There has been so much that has transpired in my life between the last time I posted tot his blog and currently. I'm seeing a new psychiatrist, as well as a new psychotherapist and that is working out really well. First and foremost I really feel comfortable with both of them so there is no doubt in my mind that these sessions are going to be extremely helpful to me in the long run. It is important to have a good relationship with both of them in order for the therapy to of any benefit, it took me close to a year to find the two of them and it's taken me a couple of months to totally feel comfortable with them but none-the-less it's finally happened and thats the most important part. My psychiatrist is Dr Hernadez and she's actually a child psychiatrist but she told me right from the start that she has, My psychotherapist is Rosie and she's just absolutely wonderful to talk to I just had a session today and out of the four or five sessions that I've had with her, todays was probably the best, I find myself really being able to open up to her which was something that has failed with others in the past, which is why my therapy up until late has just been not been all that beneficial for me. Currently the psychotropics they have me on is Lexapro 20mg, Temzapam 30mg (taken at bedtime to help me sleep, which I normally just give to Alan, and Xanax 2mg.

Now you are probably wondering who the hell is Alan, well he is a friend whom I met online about 2 1/2 - 3 years ago and he moved down here in December to be part of my life, and because he claimed he wanted to be my partner, the first couple of months was great, wonderful and fantastic, since then however we've been on a gradual decline in our relationship, just in case you wondering he is HIV -, and well we will just have to wait and see what happens, recently I found out he told a mutual friend that he couldn't stand being touched by me, hugged by me, kissed by me and always wiggles his way out of me me attempting to cuddle with him. The following day after all this was revealed to me, he stated that he wanted to make our relationship work out, and frankly I just don't see this happening and think it's going to be very difficult for it to transpire because now I totally feel uncomfortable showing him any affection what-so-ever. I constantly find myself now apologizing any time that I touch him or make any comments that could be constured as affectionate, sexual or romantic. He on the other hand has made some attempts to convey his feelings and emotions however I take them with a grain of salt, don't think much of them, try not to read too much into it and somewhat push him away to some extent. We will see exactly what happens from here until the time my disability is approved.

Yes it's been well over a year now, and my Disability still isn't approved. My disability went into it's second phase which was to request a reconsideration of their decision it was filed on Oct 5, 2004, it didn't get forwarded to the state board until Nov 22, and nobody can explain why. Additionally even though my cardiologist had ordered a stress test, it wasn't satisfactory to the state board whom sent me to yet another one of their cardiologist who gave me a half-assed stress test, which I wasn't able to complete. I was on the treadmill maybe a total of 45 seconds to one minute, before having to stop. that was on May 4, and I was told that a decision would be made on the reconsideration phase within a week or so after seeing their cardiologist, and here it is the beginning of June and still no decision has been made as of todays date. In the interim I took the time to write my Congresswomen, Debbie Wasserman-Schultz and ask her to write the disability board on my behalf flagging my file as having a congressional interest. Which I think I previously mentioned was something that my attorney had informed me really makes the disability board attempt to hustle and will often make a huge difference. Well according to the Medical Adjudicator whom I spoke with a little over two weeks ago, it didn't make that much of a difference he called wanting me to fax him copies of a form I had already sent them twice which I immediately faxed to him, upon him recieving them he informed me that although there were some indications with my medical condition it didn't warrant the disability board approving my claim. I couldn't believe that first of all he offered that infomation over the phone, secondly it made me quite upset. I called him back to confirm what he had said after the fax was sent and just started going off on him (not in a negative or nasty way) but I just pleaded my case out to him and explained that my doctors tell me working would be detrimental to my health and for me to even consider going to work would result in me having to stop meds, and just continued going off. He said that he'd have another talk with the medical doctor who reviewed my file and he was going to give the file ot their psychiatric doctor to see if I wouldn't qualify for the claim being approved on the mental side (which I don't feel i have a snowball's chance in hell of happening). Finally when I had yet to hear anything last week I attempted calling him again on Tuesday not recieving any answer, I left a message with number and reason why I was calling (which was to find out why no decision had been made). Finally yesterday about 1:30pm I got a hold of Mr Clack (the adjudicator) and he stated that the file was given to the psychiatric doctor on the 26 and that he expected some kind of response either this friday, and if not definately by next friday. He also changed his tune about the Congressional woman writing to them on my behalf he stated, that it really changed the way they are reviewing HIV cases atleast in that office and how tcells and fatigue and stress all factor into the illness, I felt like he wanted to go into my detail but wasn't able too, I don't know if this was some type of ploy to just put me off a little more of if he was scared that I'd go off on a tangent again or what. It almost has me thinking that my claim just might be approved. I really don't like thinking that however because it will be a tremendous disappointment if it isn't approved and that's with me expecting it to be denied. None the less we will see what happens and I'll post an update here as soon as I get word one way or another.. It's just amazing all the hops and crap they put one through when there should be no question about my approval whatsoever.

Wednesday, October 06, 2004

Platelets still on an upward swing.

This morning I had a 9:45 am appointment with Community Health Care, I spoke with Dr Heglar about my disability he did agree that I was disabled I think he was concerned that I was going to stop treatment just to keep my Tcell levels low however I wasn't asking for his opinion due to that situation. I was asking because I need to make sure that we are on the same page as far as my medical condition. I really am thankful that I have Dr Heglar for my medical doctor he really is wonderful and although it looks as though the platelet count is headed upwards to a level where Dr Heglar wants to slowly ease off the prednizone, as he told me to start weaning off the prednizone, by cutting my dosage by 10 mg for a week and then an additional 10 mg the following week.

Wow it's unbelievable today I went to Dr Heglars office as I normally do, walked in and found that my platelet count was at 81,000, does this mean that I won't be having them surgeons cut at my flesh and rip out my spleen?? - Yeah I know that sounded graphic but that's what has been going on in my head ever since I learned that this was a strong probability for me in the very near future. Now there is still the liver damage or scaring to worry about, but we will see what my liver function is over time I suppose, I will find that answer.

I really need to cut back on smoking if I want to truly be proactive about my health considering the fact that I'm sick, and no matter how you look at it, twist and turn it the fact remains I have a virus that isn't going to just go away, sure you might say "Well you'll get where you are undetectable", yet that doesn't provide you any comfort when you think about what undetectable means. All it means is that the Virus has stopped producing copies of itself and has died off to levels that can't be detected by lab work, ultimately your still have this virus running through your body.

I have also decided to seriously consider starting a support group for other newly diagnosed individuals, I should probably start right at home with APFL, seeing if they would provide me with some space, or volunteer some of my time at APFL as this is something I have desired to do from the onset of my illness, be there. Something that has been playing more and more in the back of my mind each and every day is creating a support agency for HIV+ individuals, creating a not for profit organization, I need to figure out a bunch of things first, but this is the starting point for anyone who wishes to become an advocate for this disease. The only thing I can think about as for as names for this NPO would be "The Robert Douglas Aids NPO" or maybe even "The Sandra Douglas Aids Program" of course the dedication of my efforts would be to the woman who fostered so many lost people through-out her life, and gave birth to me.

If you have any ideas, I'd love to here input from my friends, maybe you've heard me mention something before that I'm missing to incorporate into my advocacy of HIV+ Awareness, Education & Prevention.

Wednesday, September 29, 2004

Five Golden ***** 's for Dr Heglar & APFL

My appointment with Dr Heglar wasn't really getting off to the greatest start first and foremost I continued sitting in the waiting area much longer than normal and began to start wondering exactly why, this was transpiring. Finally after waiting for about 45 minutes the gentleman working the front desk motioned for me to come over he explained that he had me in the computer for an appointment but not on the doctors schedule which made absolutely no sense to me at all.

Next thing I know Dr Heglar comes up to the front office and was extremely upset with his staff because of appointment time of the patient that had just been called into the back, he was absolutely furious because they were so far behind schedule the clerk was asking me at that point if i could return the following day to see the Doctor, I explained that I need to arrange transportation and that it wouldn't be all that easy for me to do, and suggest maybe just waiting until the following week, at that point Dr Heglar said, no it's not fair to Mr Douglas to do that, proceeded on telling his front office staff that they couldn't ever do this, that now he won't be able to take lunch because of them messing up and just to carry on. This impressed me greatly.

I asked what the Dr Heglar liked for lunch and offered to go pick him up lunch especially if I was going to have to wait another 30 - 45 minutes (which is approximately how long his appointments take). The guy said "that would be so nice", I asked "what does he like?", he said "he loves sandwhiches, any kind of a sandwhich". I said go ask him what he'd like? He declined having his patient go pick him up lunch even though I wouldn't have thought twice about it. Hell I would have even payed for it.

The above is not even close to why I titled this post 5 stars for Dr Heglar, when I was finally called into the back to see Dr Heglar the first thing he told me was that he had spoken with Dr Sharma and it just impressed me that this Dr Heglar follows my case so closely. This is really the type of Doctor that you want working for you. He is in very good at following up, and monitoring his patients very closely, he's obviously a doctor who cares a great, great deal. I am just very thankful that I have him.

The situation on the home-front has been intense and I feel it coming to a major scheetch as it's become so totally unacceptable at this point I made it a point to stop and see if there was anyway that Kristopher Fegenbush my Case Manager was able to see me so that I could discuss housing opprotunities for someone who has absolutely no income. He was able to see me and we did discuss many options, even some possiblities of moving out of the state of florida for awhile to be with friends and how that would effect my situation, even though with every thing pending with my current health condition wouldn't seem to smart to pursue a move out of state.


Tuesday, September 28, 2004

Ashtok K Sharma aka My cardiologist

See I told you there are many Dr Sharma's in the Broward county area, and although the name doesn't sit all that well with me based upon my early dealings with Dr Sheetal Sharma over at Comprehensive Care, how can you really judge a book by it's title, you can't you have to at least flip through a few pages before you can make any determinations.

The office was very nice, as I walked up to the door I noticed that there was a female Dr Sharma in the practice who was a GI specialist, I wonder if it was her I was suppose to meet over at Broward General's West Wing Clinic.

The cardiologist basically informed me that I was a walking heart attach just waiting to happen, I explained to him the chest pains, shortness of breath, and other related issues and he immediately wrote me a prescription for Nitroquick, so now officially every place I go I carry a little bottle with me and if the chest pains start I'm am to place one of the tiny tabs under my tongue wait 15 minutes and if the chest pain hasn't gone away repeat it, and then again in another 15 minutes if at that point the chest pains haven't stopped I'm need to call 911.

He did an echocardiogram (EKG), that at some point they would like to do a catherization but not while the issue with the platelets is present, and that I needed to go over to Broward General for Stress-Test. He stated that because of my current conditions and being as the Kaletra has increased my bad cholesterol that they wouldn't put me on a treadmill the stress test would be performed by giving me injections. - Wonderful, absolutely wonderful so now we are talking HIV, Spleen Removal, Heart-Attack, and possible liver damage?? - What the hell is going on with my body. I feel like that little blonde bitch that used to be on TV.

STOP THE INSANITY!. (Especially with things going on with my current condition at home which I won't go into here for that you'd need to read my other journal blogger).

Dr Sharma wanted to see me back in his office on Oct 28, 2004 @ 11:45am.

Wednesday, September 22, 2004

Dr Heglar MD

Today's appointment with Dr Heglar wasn't the greatest, thank goodness the "shrinkmaster" gave me the xanax because after today I really need them. Just last week I had made sure that The Cancer Center over at Broward General where I've been seeing Dr Taub, had faxed over to Dr Heglar the medical records, which I discussed with him in detail.

My Bone Marrow Biopsy was negative for leukemia, and also my Hep Screenings were negative which is fantastic, also according I guess they were able to tell from Bone Marrow Aspirations that the Thrombocytopenia (low platelet count) wasn't not due to the HIV issue. There is however some possible liver damage and/or abnormalities, and also my spleen is enlarged which they had explained to me when I was first diagnosed. These are the reasons that Dr Taub had wanted me to follow up with Dr Sharma a GI specialist in the West Wing Clinic at the hospital somehow I over looked that appointment due to the fact that I thought that was the old Dr Sharma that I was seeing over at Comprehensive. (I've found out lately that in South Florida there are MANY MANY "Dr Sharma's" I guess it's a common name amongst india's natives.

Dr Heglar referred me to Dr Piecher which is a GastroInterologist who will determine if the liver is actually damaged and in anyway shape or form able to be repaired, and secondly will make do additional work up on the situation with the spleen. Dr Heglar explained that more than likely after this procedure is done that I would be worked up surgically and they would have to go in the hospital and they would have to remove my spleen. This wasn't the greatest news I'm not looking forward to having a MAJOR SURGICAL procedure done on me.

My platelets were at 44,000 just slightly up from last week which was the up-side to the entire visit with Dr Heglar today.