%@ Language=Inherit from Web %>
|
A Retrospective Journey through AIDS..." Michael Wallace Connett |
|
"The South Bank HIVe at Seminary Square" Michael W. Connett 1043 Russell Street - Suite 1 859-291-2214 Wednesday, October 13, 2004
photo from www.greatercincinnatiglbtnews.com
"I Never Expected to Live this Long..." As you know; this year World AIDS Day is the Sunday following Thanksgiving on December 1st, 2002 and we are now into the third decade of this global catastrophe. I recently taped an interview for a World AIDS Day program being produced to air on local cable outlets. Sitting here in the living room/office space of My South Bank HIVe, I looked into the camera after being asked my thoughts and replied: "I Never expected to Live This Long". I've been thinking about that ever since. I have been a Witness since the beginning and a survivor for the last eleven years. After I was tested and diagnosed in 1991, I began writing about my experiences and compiling them under the title: "Coming OUT of Hiding: A Retrospective Journey through AIDS..." . The purpose and goal of this endeavor: The importance of telling such stories was recently addressed by a keynote address given by Mary Fisher during National AIDS Awareness Month (http://www.hivcouncil.org/mary_fisher.htm). To continue; I've been thinking a lot about that statement in my interview, looking back over my last eleven years and having a hard time coping with My Life with HIV. Today, I finally seem to have emerged from this current Blue Spell and wanted to share these additional thoughts as well as begin compiling them on my web site. Although we now know that the Virus doesn't discriminate against who it infects anymore, I think that the overriding point that SOCIETY still does is what the theme of Stigma and Discrimination was developed to address. It is that Stigma and Discrimination that continues to present obstacles to an infected persons "Quality of Life" and I fear that the current medical advances and increased longevity have come to sugar coat the reality of Life, and Living, with HIV/AIDS: "U.S. Supreme Court decision: "Subsequent decisions have held that AIDS is protected as a handicap under law not only because of the physical limitations it imposes, but because the prejudice surrounding AIDS exacts a social death which precedes the actual physical one. This is the essence of discrimination - formulating opinions about others not based on their individual merits but rather on their membership in a group with assumed characteristics." from the movie "Philadelphia" My friend Tex wrote: Hi! Michael, I know it's really none of my business, but what kind of problems are you having coping. Anything I can do to help?"
That is what this part of the story is about. You know how fond I am of Quotations; as Marlene Dietrich is now quoted as saying: "I love quotations because it is a joy to find thoughts one might have, beautifully expressed with much authority by someone recognized wiser than oneself". This one describes my recent fog:
"A time comes in your life when you finally get from AWAKENING - author unknown I cried out ENOUGH! after I obsessed over my last eleven years and took an emotional roller coaster ride. I missed meds by putting off ordering refills while I wrestled over whether or not I could, would or should. However; they arrived today and I've had a re-awakening. I will be sharing my story In honor of and on World AIDS Day. Somedays, Life in The HIVe's a Bitch!!! For now though, just about everything I've written is contained in my web site or one of the many files that litter The HIVe and continues to be a "work in progress". My dream has always been that when I cease writing and have left this earth, it would be published and passed along to others making the same Journey. That's the goal that helps me get out of bed each morning. However, as I was looking back over it all and considering where I am now, I felt that it had all been in vain. Even though I seemed to be beating the deadline, I had failed to live up to my mission statement. A friend from the UK said:
He's right, of course, and that's what I've been trying to do, everyday with every breath I take. But as I said, "Somedays, Life in the HIVe's a Bitch!". That's why I still have to believe that World AIDS Day is important. Perhaps for no other reason than it does make Joe Public think about AIDS a little bit more than normal. And it comes at a perfect time of the year and this year on a perfect Day on a perfect weekend...
From what I've seen and heard so far, locally we seem to have let the opportunity turn into an occasion where everyone says "yes, well, it's all terribly sad, but..." rather than a well publicized and planned consciousness raising event. The planned cablecast that I participated in taping is the only thing I'm aware of here.
"He who conceals his disease cannot expect to be cured." As Mary Fisher talked about recently, it is the telling of our stories that is key to making sure that every day is World Aids Day. To honor World AIDS Day, I wanted to use the strength and creative energy from my recent re-awakening to continue the telling of my story. Although you may not have read anything I've written yet, you have lived through the same times and seen many of the same headlines, stories and events that I have. In her recent remarks, Mary Fisher said: "When first I was diagnosed with HIV in 1991, and when first many of you joined the fight, the AIDS community had its own story. It was a story of mysterious reports and sudden wasting, of an unnoticed community of hemophiliacs whose lives were suddenly being cut short and a previously hidden gay community whose fabric and texture was suddenly, brutally, being exposed by AIDS. Headlines told stories of families making three discoveries simultaneously: their brothers were gay, their brothers were sick, their brothers were dying." This spoke strongly to me as I was also diagnosed in 1991 and am a gay man. However, I came out to my family with the first discovery in 1978. The response wasn't pretty and I was told I'd have to leave my childhood home. In her magazine, Oprah says in part: "Think back for a moment on your history - not just where you were born but the circumstances that contributed to your being here. Consider what you believed about yourself based on what others told you directly and indirectly, since 93 percent of
communication is through nuance and action, not words. How were you treated? That is what defined how you experienced the world - both the moments when you felt valued and wanted and the moments when you felt wounded and sure you'd never be fulfilled. Though you've probably had times when you didn't want to press on, you have survived your path. You are still here, still standing - and what an amazing journey your life has been... What I know for sure is that your life is a multipart series of all your experiences - and each experience is created by your thoughts, intentions, and actions, to teach you what you most need to know. Your life is a journey of learning to love yourself first and then extending that love to others in every encounter. How can you travel on that road without fear? Whenever I'm faced with a difficult decision, I ask myself: What would I do if I weren't afraid of making a mistake, feeling rejected, looking
foolish, or being alone? Remove the fear, and the answer comes into focus.
If you're holding anyone else accountable for your happiness, you're wasting time. You must be fearless enough to give yourself the love you didn't receive. Begin noticing how every day brings a new opportunity for your growth. How buried disagreements with your mother show up in arguments with your spouse. How unconscious feelings of unworthiness appear in everything you do and don't do. All these experiences are your life's way of making itself whole - sometimes whispering, often screaming. Pay attention. Every choice gives you a chance to pave your own road. Keep moving. Full speed ahead." And the headlines, stories and events that are part of my experience:
I'm doing the best I can, but it's not easy. That's my story and I'm sticking to it. I recently sent a note to Oprah suggesting that she do a story on: "Life, and Living, with HIV/AIDS in America" as a result of this article. As a witness from the beginning and a survivor for the last eleven years, I expressed my deep concern that the current medical advancements and increased longevity had only served to sugar-coat the reality doing a disservice to the public and actually impeding prevention efforts. This was brought home to me in the headlines,
stories and events that are part of my experience. I am very well aware that mine is a rather dark story that people do not want to hear, but I tell it to counter the sugar coating for the sake of prevention. I'm hoping that a heaping dose of my honest reality about "Life, and Living, with HIV/AIDS in America" - "that most of the time, it sucks... Big Time!" might succeed where the other side of the story hasn't.
Thanks for allowing me to share my Journey with y'all.
Best Regards,
"... either get busy dying or get busy living, which would you choose?"
I have come to believe that it's not that simple. In my experience, I've tried to do BOTH in balance. I have busied myself with living in the hopes that I could "use the rest of my life the best I can so that the people and places through which my journey led me would remain a little bit better for me having passed their way". At the same time, I have also busied myself with preparing for the Journeys end so that I would not have any fear about reaching it, leave anything undone or anyone else responsible. The paperwork has been done, the funeral paid
for and my bags are packed: I'm ready to go... I would hope that my wishes would be respected and no one would insist on waking me up just to say goodbye. Especially if they hadn't bothered to just say hello before then.
I would venture a guess that good thoughts, vibes and prayers, etc are indeed greatly appreciated. However, I also have to consider what The Pope said in an article I posted previously.
For future reference, Thanks for the Love, Support and Friendship. But when my time comes, and I believe I am well prepared for it, please just love me enough to let me go and "sleep in Heavenly Peace". I wish you all Love and Happiness in the New Year
Michael
”Together, these two tests are T-Cell Tests What Are T-Cells? T-cells are a type of lymphocyte (white blood cell). They are an important part of the immune system. There are two main types of T-cells. T-4 cells, also called CD4+, are “helper” cells. They lead the attack against infections. T-8 cells, (CD8+), are “suppressor” cells that end the immune response. CD8+ cells can also be “killer” cells that kill cancer cells and cells infected with a virus. Researchers can tell the T-cells apart by specific proteins on the surface of the cells. These proteins are also called “receptor sites” because they can lock onto certain molecules. So a T-4 cell is a T-cell with a CD4 receptor on its surface. This type of T-cell is also called “CD4 positive”, or CD4+. Why Are T-Cells Important in HIV? When HIV infects humans, the cells it infects most often are CD4+ cells. The virus becomes part of the cells, and when they multiply to fight an infection, they also make more copies of HIV. When someone is infected with HIV for a long time, the number of CD4+ cells they have (their T-cell count) goes down. This is a sign that the immune system is being weakened. The lower the T-cell count, the more likely the person will get sick. There are millions of different families of T-cells. Each family is designed to fight a specific type of infection. When HIV reduces the number of T-cells, some of these families can be totally wiped out. When this happens, you lose the ability to fight off the particular infections those families were designed for. When this happens, you might develop opportunistic infections. How Are the Test Results Reported? T-cell tests are normally reported as the number of cells in a milliliter of blood. There is some disagreement about the normal range for T-cell counts, but CD4+ counts are between 500 and 1600, and CD8+ counts are between 375 and 1100. CD4+ counts drop dramatically in people with HIV, in some cases down to zero.
The ratio of CD4+ cells to CD8+ cells is often reported. This is calculated by dividing the CD4+ value by the CD8+ value. In healthy people, this ratio is between 0.9 and 1.9, meaning that there are about 1 to 2 CD4+ cells for every CD8+ cell. In people with HIV infection, this ratio drops dramatically, meaning that there are many times more CD8+ cells than CD4+ cells. The T-cell value bounces around a lot. Time of day, fatigue, and stress can affect the test results. It’s best to have blood drawn at the same time of day for each T-cell test, and to use the same laboratory. Infections can have a large impact on T-cell counts. When your body fights an infection, the number of white blood cells (lymphocytes) goes up. CD4+ and CD8+ counts go up, too.
Because the T-cell counts are so variable, some doctors prefer to look at the T-cell percentages. These percentages refer to total lymphocytes. So if your test reports CD4+% = 34%, that means that 34% of your lymphocytes were CD4+ cells. This percentage is more stable than the number of T cells. The normal range is between 20% and 40%. What Do the Numbers Mean? The meaning of CD8+ cell counts is not clear, but it is being studied.
Most researchers believe that the CD4+ cell count is a good measure of the health of the immune system. The lower the count, the greater damage HIV has done. But some people with almost no CD4+ cells have stayed healthy for a long time. CD4+ counts were used to estimate how long someone would stay healthy. However, the viral load test is better for this purpose. CD4+ counts are now used to indicate when to start certain types of drug therapy:
When to start antiviral therapy: However, the viral load test has become at least as important as the CD4+ count in deciding when to start antiviral drugs.
When to start drugs to prevent opportunistic infections:
Less than 100: toxoplasmosis and cryptococcosis Less than 75: mycobacterium avium complex (MAC) New Mexico AIDS InfoNet Fact Sheet “What is Viral Load? “What is Viral Load? Viral load means the amount of HIV in the blood of an HIV+ person. While CD4+ T-Cell counts often help doctors determine how healthy your immune system is, viral load can help you figure out how fast the immune system is being damaged. If your viral load is high, your immune system may be getting weaker. When your immune system gets weaker, other infections and diseases can move into the body. Also, if a woman with HIV has a high viral load while she is pregnant, her baby has a higher chance of being infected with the virus. How can you test for your viral load?
Does it help to know what your viral load is?
Undetectable: what does this mean?
What’s the bottom line?
NOTE: In regard to the standard Viral Load test, <50 is the lowest benchmark reported and is considered as a “less than Detectable” Level. Understanding Viral Load AIDS symptoms create double threat SUMMARY: New research suggests that AIDS presents a double threat when it attacks the brains of patients: Besides wiping out the ability to think clearly, the virus can also prevent them from remembering to take the drugs that could keep the disease from getting worse. New research suggests that AIDS presents a double threat when it attacks the brains of patients: Besides wiping out the ability to think clearly, the virus can also prevent them from remembering to take the drugs that could keep the disease from getting worse. "Whenever possible, doctors need to opt for simpler medication regimens over more complex ones," said Dr. Charles Hinkin, an associate professor of psychiatry at the University of California at Los Angeles School of Medicine. Hinkin and colleagues studied 137 patients in the Los Angeles area who were taking the AIDS "cocktail," also known as HAART (Highly Active Anti-Retroviral Therapy). Some patients had developed AIDS, while others were only HIV-positive. The findings of the study appear in the Dec. 24 issue of the medical journal Neurology. One in three of the patients had cognitive impairments, and they took their medications as directed only 70 percent of the time. By contrast, the patients without cognitive problems managed to take their drugs correctly 82 percent of the time. Missed doses are important because doctors fear that the virus can mutate into new, more powerful forms when it's not being attacked by drugs. Researchers found that patients with cognitive decline had an especially hard time remembering to take three doses of pills each day. They did so only 52 percent of the time, compared to 79 percent among the other patients. Patients can usually remember to take doses in the morning and at night, but a mid-day dose can throw them a curve, Hinkin said. The researchers did not rely on reports from the patients, but instead placed tiny electronic devices in pill bottles to track when they were opened. Even in the age of powerful AIDS treatments, cognitive decline is still common. Patients continue to report difficulties with concentration and memory. Cognitive problems can appear even if opportunistic infections have not started to attack the body. Scientists suspect the villain is inflammation in the brain caused by the immune system's attack on the virus.
"Self-control the real cure for AIDS"
"AIDS, Holocaust are not synonymous"
"Abstinence education is the only way to go"
Having recently smacked through a patch of turbulence, I thought I'd include a report on my "...balls in the air". After my emergence, re-awakening and triage; I will guardedly say none have shattered. However; they are indeed, irrevocably scuffed, marked, nicked, damaged. They will never be the same".I will be sharing my story In honor of and on World AIDS Day. Till then; know that I'm well, Take Care and have a wonderful Thanksgiving. I'll keep y'all posted...
Best Regards! Michael
The depression era taught us that there is something worse than being forced to work. It is being forced not to work. Greetings, & Welcome to the group! As you suspected; this is, indeed, a familiar predicament but I also suspect that it is of greater concern to those of us considered long-term thrivers/non-progressors. This Month marks my 11th year thriving with HIV and this is an issue that I've given much consideration in this year since celebrating my 10th Anniversary. Earlier this year, I wrote:
I came to the conclusion that there isn't any job out there that could provide me with "SGA" or a wage that would adequately compensate for the loss of my current benefits and cover my living expenses. As I understand SSDI, you will eventually lose it and Medicare if you go back to work "full-time". You can go through a 6 month "trial work period" and keep your Medicare that long. However, you can work part-time (provided you earn no more than $750.00 a month) with no damage to your SSDI and Medicare benefits. Your means-based benefits (HUD,
Food Stamps, ADAPS, Medicaid, etc.) will be adjusted though.
I have decided that it is my "Life" that is now my work and my vocation is to "Use it well...".
Optimism may work against HIV patients Thu Oct 10, 8:30 PM ET Randy Dotinga, Gay.com / PlanetOut.com Network SUMMARY: A new study suggests optimism often breeds bad decisions for people who are infected with HIV (news - web sites). It might seem logical that pessimistic HIV-positive people would take more health risks than their counterparts, but a new study suggests that the exact opposite is true: optimism often breeds bad decisions. In a survey of 220 people infected with HIV, researchers at the University of Pennsylvania found that those with the most hopeful views of the future were most likely to skip doses of AIDS (news - web sites) drugs and have unsafe sex. "Optimism appears to be a factor in how adherent one is to medications and safe sex practices," study co-author Dr. William C. Holmes told the Gay.com/PlanetOut.com Network. "The results do seem to be intuitive. In general, people do tend to be less preoccupied by things in their life that don't worry them." Holmes, an assistant professor of medicine and epidemiology at the University of Pennsylvania, and colleague Dr. Joseph L. Pace reported their findings in the September issue of the Journal of General Internal Medicine. The two researchers judged levels of pessimism and optimism by asking HIV-positive people to describe their feelings when first diagnosed, their feelings now and how long they expect to live. Members of minority groups, along with women and drug users, were most optimistic about their futures. White people, those with low levels of education and those with weaker immune systems, were more likely to be pessimistic. The researchers found that 26 percent of optimists sometimes failed to take their medications, twice as many as in the pessimist group. And about 57 percent of optimists said they sometimes had unprotected sex, again about twice the rate among pessimists. Optimists tended to have stronger immune systems than pessimists, and their good health may allow them to become distracted by other things, like their jobs, Holmes said. Also, optimists may avoid activities that remind them of the days when they weren't healthy, he said. Other factors may be at work too. "Though I have no evidence to support this, some folks who are quite knowledgeable about their HIV disease may consider that a low viral load in the blood infers a similarly low viral load in other body fluids and might decide that some sexual acts are not as risky as when their viral load was higher," he said. The irony is that levels of the AIDS virus may rise if patients also develop a cavalier attitude toward taking their drugs, he said. "I’m only a man in a silly red sheet Digging for kryptonite on this one way street I’m only a man in a phony red sheet Looking for special things inside of me, inside of me Inside of me, yeah inside of me, inside of me..." “Superman” by Five for Fighting Each day, and the living of it, has to be a conscious creation in which discipline and order are relieved with some play and pure foolishness. New Hiv+ member looking for... Have been trying to find sites for Poz people to meet, but havent found them, if you know of some please send to me. Dont want to be isolated. Just found out on Monday, it has been a long week. Looking forward to making some new friends... from the POZMEN YaHoo Group "This recent posting struck a chord in me on several measures and I wanted to get some feedback, especially from the long term residents of the HIVe...
Just wondering, as Dr. Phil would say: "What were you thinking?"
I am also a recipient of HUD Housing Assistance in the form of a "Housing Choice Voucher" which is now replacing the old Section 8 Certificates. I pay $88.00 on a $335.00, 1 Bdrm, non-equipped (no stove/refrigerator provided-which is also unusual) kitchen unit where all the utilities are separated out and I am responsible for (including water & sanitation which is unusual). My gas & electric is even billed at $72.00/mo and I get a quarterly bill for water & sanitation (I've not yet received my first one). My SSDI is $696.00 monthly. I have been on Disability and qualified for Section 8 since '93. This is my fourth attempt to make a "Home" in a HUD qualified apartment. This is the reason I noticed and joined this group. I am wondering what other peoples experience with HUD/Section 8 has been. Mine has been a real learning experience and quite stressful at times and I've found that Low-Income Housing comes with stigma and discrimination all its own. At least it does here in Northern Kentucky:
HUD is another well-intentioned and workable federal program that is screwed up by the mis-guided policies and intentions of the local administrations/Housing Authorities. I've been writing about and urging reforms for several years now. Would be interested in hearing about others experiences. Thanks!
"Howdy!
Thanks for mentioning how sk(r)ewed the system is against single adults - especially males!
"I used to be afraid of dying, but I'm not anymore.
I'm more afraid of what happens to the people who live..." from "And The Band Played On" Post Office Box 2363 * Covington, KY 41012-2363 |