Sunday writings…
I really don’t know what to write tonight, I really don’t feel like writing because I’ve not prepared anything really. The last holiday weekend before the grind begins with a bang this week. I’ve been banking on sleep as of late – trying to steal away hours here and there, I love to sleep.
I’ve been on these new medications now for 3 months.
I have to say that throwing up is right up there on my most hated activities during my day. I have morning sickness once or twice a week. This morning it woke me up out of a sound sleep, as if I had spent the night prior drinking until I could not drink any more.
I didn’t even have a drinking dream to go with the morning sickness. I mean it would have meant so much more if I could put throwing up into context! Alas, I was exhausted afterwards and it took me an hour to calm down and get my breathing under control because my body was in that “post vomit” stage of recuperation… UGH!
It was a beautiful day today. I sat out on the lanai enjoying the sunshine. The days are starting to get shorter and the sun will begin to set earlier and earlier. I can’t wait for the trees to start turning.
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I spent the past couple of nights reading Elie Wiesel’s “Night.” I found the read to be as cathartic as Primo Levi’s Survival in Auschwitz. Both men were boys when they were taken to the camps. I knew the story, even before I read the first page. Though the two stories are different, they share the common thread:
“You are in a concentration camp. In Auschwitz…”
“Remember,” “Remember it always, let it be graven in your memories. You are in Auschwitz. And Auschwitz is not a convalescent home. It is a concentration camp. Here, you must work. If you don’t you will go straight to the chimney. To the crematorium. Work – or crematorium – the choice is yours.”
Reading Elie’s account as he moves from camp to camp, trying to stay with his father, to keep his father alive, through the worst of conditions was amazing. Where Elie tells us his story on a great scale, describing seasons and changes, his visions of babies being killed and burned in ditches was exceptionally brutal.
“Poor devils, you are heading for the crematorium.” Not far from us, flames, huge flames, were rising from a ditch. Something was being burned there. A truck drew close and unloaded its hold: small children. Babies! Yes, I did see this, with my own eyes…children thrown into the flames. (Is it any wonder that ever since then, sleep tends to elude me.)
How was it possible that men, women and children were being burned and that the world kept silent? No. All this could not be real. A nightmare perhaps…
Night, ppgs. 32-33, 38-39…
Primo Levi tells another story of the same conditions but from a different point of view. Those reviews of that text are in my Holocaust files in Categories, you can read them there. Both writers are important to know, to read and to respect.
It is interesting that I was reading this text over the weekend, and during Saturday night’s Coast to Coast, with Ian Punnet, a caller called in – it was an off topic call – this man said that he had studied in Germany and knew people who were alive during WWII and he told the listeners that in Germany during that time, people were told and it was later understood that on certain days, one just did not go to the train stations at all…
To address the question about “the world not knowing what was going on, it is said that Germans learned not to explore outdoors or go to the train stations on certain days while the extermination of the Jews was being carried out.
Any read of the Horrific stories of the Holocaust are important so that these memories do not go unheeded, that the warnings are not passed on the future generations. “That we should remember, so that we should never forget.” I highly recommend these two texts for those who are interested in Holocaust studies, ‘Night’ by Elie Wiesel and ‘Survival in Auschwitz’ by Primo Levi. These stories must be passed on…
I’ve made some minor changes to the blog, and I’ve added and deleted some of my bookmarks on the side bar. People are returning from hiatus and from vacations over the summer, so go read them, each blogger on my blog list is worth the time.
I hope all of you are well and thanks again for your readership.
AIDS virus is a "double hit" to the brain: study
God, I have a headache now !!
WASHINGTON (Reuters) – The AIDS virus damages the brain in two ways, by not only killing brain cells but by preventing the birth of new cells, U.S. researchers reported on Wednesday.
The study, published in the journal Cell Stem Cell, helps shed light on a condition known as HIV-associated dementia, which can cause confusion, sleep disturbances and memory loss in people infected with the virus.
It is less common in people taking drug cocktails to suppress the virus, and why HIV damages brain function is not clearly understood.
The virus kills brain cells but it also appears to stop progenitor cells, known as stem cells, from dividing, the team at Burnham Institute for Medical Research and the University of California at San Diego found.
“It’s a double hit to the brain,” researcher Marcus Kaul said in a statement. “The HIV protein both causes brain injury and prevents its repair.”
The cocktail of drugs known as highly active antiretroviral therapy or HAART that treats HIV does not infiltrate the brain well, allowing for a “secret reservoir” of virus, said Stuart Lipton, who worked on the study.
HIV-associated dementia is becoming more common, as patients survive into their older years.
Working in mice, the researchers found that the virus directly interferes with the birth of new brain cells from stem cells.
“The breakthrough here is that the AIDS virus prevents stem cells in the brain from dividing; it hangs them up,” Lipton said. “It’s the first time that the virus has ever been shown to affect stem cells.”
The culprit is gp120 — a protein found on the outside of the AIDS virus, the researchers found.
“Knowing the mechanism, we can start to approach this therapeutically,” Lipton said.
“This indicates that we might eventually treat this form of dementia by either ramping up brain repair or protecting the repair mechanism,” Kaul added.
Just beneath the Surface …
Do you see it?
Can you feel it?
Do you ever think about it?
M O R T A L I T Y !!!!
I started my day in a church. Do you know why I did that? Why it was important for me to receive the sacraments today? To have a minister pray with me and for me, to bless me and absolve me,
Almighty God,
to you all hearts are open,
all desires known,
and from you no secrets are hidden,
Cleanse the thoughts of our hearts
by the inspiration of your Holy Spirit,
that we may perfectly love you,
and worthily magnify your holy name;
Through Christ our Lord. Amen.
The older I get, the more serious is my thought about Mortality. We all will face it one day, but I can’t help but ponder this subject in greater detail, because unlike many of you, life could take a turn very quickly and I could die, the last time this happened was in 2006 when I was testing new medications, and I got severely ill and I remember saying to myself one particular night that “I thought I would die.”
On my birthday I was sitting in the room at the meeting, the church above us I spoke about the fact that none of us know when that appointed day will come, but for me I have been waiting on it for some time. I fancy God sitting up in his heaven, with a sly look on his face, holding strong to one corner of the carpet that I am standing on and he yanks it up and I fall, the end comes crashing down around me.
Nobody wants to say the words, but I know that many of my friends are wary of mentioning the word “death” so they speak in hushed tones using words like “I’m so proud of you”, and “that I am a miracle” and “that God has blessed me with long life,” to date. The best line is this one “He looks so good, that unless you knew or asked – you’d never know he had AIDS!”
I work very hard at avoiding or talking about the obvious strain on my mental health, yet I do not dwell on death, but I have a healthy fear of it for sure. You’d never know I was even gay, from the outside. You’d never know that there was an ember burning quietly and strongly beneath the surface. That person sitting in the same place as you had a date with death several times in his life, and he avoided the reaper.
I remarked to a friend that I was afraid of what was ahead of me after the meeting, and for some they cannot fathom this fact, but my friends did. Some of the men told me that I should go on with my life and not think about it, but how can I Not think about it?
I just wanted to remind you that Mortality is an issue that I deal with every day now. Each day that passes – I thank God for life – which is why I went to mass and I think in retrospect, that is why the Reverend Canon laid hands on me and asked God to bless me and keep me healthy. I heard the urgency in her voice – the necessity that God grant that prayer – right then and there. To guarantee me a place “in community” for as long as God would permit.
I do not know how long my body will continue to take the pills I push upon it daily, or how long these new medications will continue to work – we are only a few months in and things look very good on paper, my body seems to like these mew medications and I haven’t had any great bodily changes. The look of death has not come over me – that gaunt AIDS look that most men get at some point in their journey, those you know are marked for death.
I remember my spirit and I pray daily and I attend mass when I can, and I spend time helping others because as long as I keep the focus off of me and on someone else, I can avoid having to look at the cold hard truth for very long. But I must tell you that I have had that “conversation with God” this week, and I made a deal. I think he agreed on the deal, as long as I served Him – and did my best every day – and I stayed in my day and not expected to die – that I would live a long life.
Religion, what is it? Is it a comfort to help us on the way to our graves? To give us something to focus on in death? A loving God, a forgiving Christ and a Spirit that loves us to fill the soul of man with hope that on that appointed day we would stand with our maker and be granted eternal life!
Is religion a cop out? The easy path?
I don’t know what to think – but I do believe – and for me that simple kernel of faith saves me. I know that nobody wants to think about it, so I write and remind you of the ever present fact that we all will face our mortality, some sooner than others. I’ve studied death and dying in my undergraduate career.
For many years I held on to the visual of Monica, the Angel from “Touched by an Angel” who said those simple words “I’m an angel sent by God, to tell you that God Loves You.”
I have seen every episode and I have a collection of hundreds of episodes here at home. During those years that I was so sick and I needed something to hold onto this little television show was my salvation, a second helping of God every Sunday after returning home from an evening mass. I kind of fancy that Andrew would stand here with me on that final moment to carry me to God in heaven.
It was easy to let go and let God, because of my faith in God and this little show that confirmed to me in visual form that there were angels and that I wasn’t alone, sitting in my apartment, sick as a dog. They even touched on the “aids” stories and the fact that even people with AIDS had angels. I believed that and I still do. Now in syndication, on Vision TV I can watch TBAA at night here in Montreal. And at Christmas I can watch the special shows that were created over the years while the show was running.
I find it funny the lengths I went to to maintain my spiritual beliefs when everyone around me was worrying that I was going to die, I was worried about that and the fact that I had no idea how I was going to survive another year. These memories are found back in 1998 and 1999.
When Christians were condemning us, my family included there, the angels were there to tell us that God loved us and still loves us today. That faith worked, because I lived another ten years and now we start another decade with stronger faith and a few angels here and there…
I’m fully aware of my mortality and that scares me.
Medical Update 7-24-07
I have been on this drug regimen for a month now. Today I saw the doctor for the first time since I started them. My T-Cells are sitting at 1186 and my Percentages are at 34% which is phenomenal. My bad cholesterol dropped from 9.8 to 3.4 in trends over the last 4 lab draws.
I feel good. Aside from a little gas, and a little morning sickness here and there, I am in fine shape. My “doc” was out, so I saw a doctor who was in the clinic and he was pleased with my labs. He told me that 40 was no big deal for him. And I am way past my expiration date. So I am keeping my impending birthday next Tuesday in perspective. He told me that for him, 50 was a big deal. So if we follow The Aging Model:
- In our Twenties – we are exploring life and ourselves
- In our Thirties – we are finding the rhythm and we are supposed to find the way
- In our Forties – we are ready to put all that knowledge into action for certain
- In our Fifties – we are ready to live out our calling, having done all that self study
- I hope that I am aging gracefully and the way I am supposed to…
HIV patients build normal immune strength in study
By Will Dunham
WASHINGTON (Reuters) – AIDS drug cocktails may be able to restore the ravaged immune systems of some people infected with HIV, researchers reported on Wednesday.
Immune cells known as CD4 T-cells returned to normal levels in an ideal group of patients, picked because they responded optimally to a combination of at least three AIDS drugs, the researchers reported in the Lancet medical journal.
The human immunodeficiency virus, which causes AIDS, plunders the immune system, leaving people vulnerable to a range of infections that may prove fatal.
AIDS is incurable, but doctors try to prop up the immune system with life-extending drug therapy aimed at reducing the amount of virus in the body.
The study involved 1,835 HIV-infected people drawn from a larger study involving more than 14,000 patients from across Europe, Israel and Argentina.
“I think it’s very encouraging that if people can respond to treatment well enough and can suppress the virus for long enough, we have sufficient evidence to say their CD4 counts can return to normal,” Dr. Amanda Mocroft of Royal Free and University College Medical School in London, one of the researchers, said in a telephone interview.
“Our previous understanding was that there was a plateau in CD4 counts so that CD4 counts would stop increasing after a sufficiently long time taking combination therapy,” she added.
Mocroft said not all HIV patients respond as well to these drugs, and many, particularly in the hardest hit regions like sub-Saharan Africa, do not have access to them.
“This is sort of the best-case scenario, if you like, that we can identify a group of patients who we would expect to have a normal CD4 count with sufficient treatment,” Mocroft said.
These patients were chosen because they responded well to the treatment, with the drugs suppressing the virus to very low levels. They were tracked for about five years.
Dr. Anthony Fauci, director of the U.S. National Institute of Allergy and Infectious Diseases, said doctors who care for HIV-infected patients have noticed this restoration of normal levels of CD4 cells in some of them. Fauci credited Mocroft’s team for documenting this phenomenon in a systematic way.
CD4 cells, a type of white blood cell, help protect the body
from infection. But HIV targets CD4 cells, using them to create
more copies of the virus, thus undermining the immune system.
After initial infection, a person can produce more CD4 cells to take the place of those attacked by HIV. But in time, the body cannot make enough, increasingly weakening the immune system.
Although it is impossible to eradicate the virus with existing drugs, it is possible to keep it at extremely low levels in some people with the right combination of drugs.
The AIDS virus infects close to 40 million people globally, most of them in Africa. It has killed more than 25 million.
Friday the 13th …
Photo courtesy of: The Ministry of Pleasure
Last night I got to bed wayyy to late to function this morning. After watching some Hilary Duff last night. Anyways, I got to bed around 2:30 in the morning and sat down with some veggies and French baguette while reading Anne Rice’s “Pandora.”
This morning the alarm clock went off at 9:00 a.m. and my body wasn’t having any of that, so I went back to bed until 3 p.m. My medications are making me a little sick to my stomach, I’ve got potty issues, and I feel like I am pregnant because now I am getting “morning sickness!!”
It is a comfy 22c here in Montreal – with clear skies at the moment although the possibility of thunder storms are in the forecast tonight. Where everyone else around North America and Canada are sweltering in the heat – it was 38.8 in some areas of B.C. yesterday!! Yikes!! The breeze is blowing and the sun is on its way down down and evening is about to start.
We’re going OUT for dinner tonight and then a Movie, Harry Potter and The Order of the Phoenix.
AIDS Lab – Jewish General Hospital
June 28, 2007 - New HIV/AIDS Bio-containment Laboratory opens at the Jewish General Hospital’s Lady Davis Institute for Medical Research
Testing and research into HIV/AIDS have taken a major step forward with today’s opening of a new $5 million HIV/AIDS Bio-containment Laboratory in the Lady Davis Institute for Medical Research (LDI) at the Jewish General Hospital (JGH).
The laboratory, whose development was spearheaded by Dr. Mark A. Wainberg, Director of Research at the JGH, will be used to grow the HIV/AIDS virus and to test tissue samples to determine how patients respond to various types of medication.
This is the fourth and most sophisticated laboratory of its kind at the LDI since the hospital began its pioneering work in HIV/AIDS under Dr. Wainberg’s supervision in the early 1980s.
“The Jewish General Hospital and the Lady Davis Institute deserve a great deal of credit for having recognized the importance of HIV/AIDS research so soon after the outbreak of the epidemic 25 years ago, and for continuing to support major, ongoing initiatives to fight the disease,” Dr. Wainberg said.
Dr. Wainberg, an internationally recognized expert on HIV/AIDS, added that the new laboratory, which is affiliated with the McGill AIDS Centre, is among the few Level 3 facilities in a Canadian hospital. In such a facility, safety precautions are so strict that Health Canada has permitted the HIV/AIDS virus to be studied and stored there. It is also one of only two centres in Quebec that are authorized to perform clinical genotyping – i.e., checking the virus’ genetic sequences to determine whether it has mutated so as to become resistant to anti-viral drugs. This test is an essential component of HIV therapy.
A total of 82 people have been trained to work in the laboratory, which received $2 million from the Canadian Foundation for Innovation for construction and equipment. The rest of the funding was provided by the JGH Foundation and various donors.
High hopes for new AIDS lab
| By Anna Bratulic, The Suburban |
|
Renowned AIDS specialist Dr. Mark Wainberg says the opening of a new Staff and equipment moved into the $5 million facility housed “We’re very proud to announce the opening of this new lab, which The lab is among a handful of similar labs in the country Wainberg says the old lab was running the risk of falling short “We really needed to have a new lab in order to meet all the Research will focus on understanding immune responses Wainberg doubts a cure or vaccine will be found in his lifetime In Canada, where there are an estimated 65,000 people While both are HIV viruses, they respond differently to treatment. “It turns out that the way the virus becomes resistant to the drugs He added that some of the researchers at the new lab will be Research will also study ways to detect infection earlier than Current screening methods can only detect antibodies that Wainberg added that the upgraded facilities will hopefully make |
Sermon on many topics…
Totem Pole in Stanly Park, Vancouver B.C.
Why is there a totem pole on this writing? Because I need a guide to write something coherent and learned. I go there mentally sometimes when I want to write, to sit in Kingcome Village with Mark Brian, the vicar of St. George’s Church, in Margaret Craven’s,
“I heard the Owl Call my Name.”
There is a majesty in the totem, a story of a people, of their traditions and their ways of thought. I heard a man speaking about the totem at the meeting tonight, and he said,
“I remember the totem, and the fact that I am the man on the bottom of the totem and not the one at the top. That keeps me grounded and sober.”
Men of different path’s populate the downtown core meetings and every once in a while you hear something that rings true to one’s soul. My heart stirred when he spoke and I remembered my spirit.
There is a lot going on in this sphere tonight, some of it good, and some of it is not so good. People are moving, leaving, breaking up and even some are moving forward in the coupling of relationships into one home and a together life. We have talked about depression as of late. And I have a particular view on that topic, because of my own depression battle and that of my husbands Bi-Polar issues.
There is NO pill that is going to make it all better. That magic pill does not exist. That’s why we have so many drug addicted people all over the world. When I got home Peter was watching a program on the Paxil fiasco. I was on Paxil once, what a nightmare. Doctors and drug companies want to ply us with all the pills we can pay for and for the most part, we can’t afford all the pills we must take on any given day.
You want to take pills and see therapists and doctors – yes do that. Sometimes depression and medical issues NEED a doctor’s or a psychiatrists fine vision. Peter’s shrink worked very hard to help us and he did. But aside from taking a pill and then finding Jesus, unless you want to get better and step out of the darkness, you have to take that first step into the light. So I offer you a candle to help light your way.
We cannot get by on medication alone. There has to come, in time, a desire to live, a desire to get better a desire to end the depression or illness. And I am one to speak about illness. I’ve been taking pills for the last 13 years to stay alive. Some sober people shun the medical necessity of some sober folks to stay alive. I’ve had all the fights I want to have about clean and sober and medical necessity.
I have been in and out of a therapists office on and off for the last 13 years. I find that another set of eyes and ears works to help me stay on track and having that guidance and therapy has, in short order saved my life. When I suffered from Agoraphobia some time ago, and I wouldn’t leave the house, I was on specific medication and seeing a specific therapist and we worked me out of the house over a six month period. It all started with wanting to sit on the front porch of my condo outside. Then I learned to walk around the block, and in turn I learned how to walk to the beach and feel safe, that my attacker wasn’t coming to get me. So I know what fear is.
And we find that “Fear is a Great Motivator for CHANGE.”
But fear can also cripple us. Do I need these pills forever, in my case, I need pills to help regulate my brain and my immune system and keeps my depression and anger in check. I know I need medication and that medication helps me stay sane, sober and alive. But I also take the steps every day to work on and with myself. Being good to myself, and doing something good for myself every day.
“Every day you should do something nice for yourself, Just Because!!“
Fear must not cripple us into complacency and ignorance about the world around us. Depression is a hard fought battle for so many, I have a viable work – therapy solution I offer my directees and kids that I work with. When parent’s who know me ask me to help them with their children, I take that as a huge compliment and a very important charge. So I am not clueless when I talk about medical issues and pills and depression. I’ve been there and I am here. I survived debilitating depression, it can be done.
Letting Go…
All life functions on the principle of letting go. We are constantly changing physically, emotionally, mentally and sexually. Our lives move forward, as if on auto pilot, knowing that forward motion is the preferred direction and never backwards. How I wish, on that odd occasion, when I wax on nostalgia, that time could be reversed, just for a time.
Letting Go is a sober issue too. Recognizing the wreckage of our pasts, taking stock and making note, and 4th stepping the past away so that 5 – 6 and 7 can take root into 8 and 9 and then our checkup 10th step and continual spiritual connection in step 11 and then when we have done these to the best of our abilities for ourselves, then we can carry the message in the 12th step. Every one in this world is availed spiritual awakenings. it is possible for us to see, experience and share spiritual experiences. Letting Go is a spiritual experience. It is a spiritual action. That one is able to let go Absolutely!!
Sometimes we do not know when to let go, then again, many of us will not let go because that would mean that we would either be alone, live alone, or perish the thought, CHANGE!!! Sometimes I read blogs and I can see the “pain on the page.” I think that some people should let go of old habits and old people, those people who are not serving us in a spiritual capacity for goodness and light. But how do I move on and let go, well, that’s tricky. One step at a time. You make a decision. You set a date and you stick to that date.
Relationships come and go and boys are a dime a dozen and I can personally assure you that if you leave a function-less relationship that is painful, there is light at the end of the tunnel. I spent much of my HIV positive years ALONE. Because men are pigs, self serving and heartless and clueless. I have had (count them on one hand) very few relationships where I knew that the man who was in my bed – wanted to be in my bed, because he understood the reality of death and illness and I didn’t scare them. But most of them, eventually I had to let go because I was moving at a different speed as them. Life has its own rhythm. And its own speed. In fighting depression, I did it alone. Oh, I had friends, but I wasn’t in “relationship” with any one in particular – for a LONG TIME…
It wasn’t until I came back from my slip, worked on me, let go of the past and all that went with it, including everything that I owned, I am still working on that “Let DOWN” and got sober this last time, that I was ready to accept love and give love, I HAD to find love in myself for myself before I could give it to someone else and have that love reciprocated.
“The Pink Neon Sign”
I have learned over the last six years in Montreal sobriety, that every human being walks around with a PINK NEON SIGN flashing above their heads. Go to enough meetings and seek spiritual solutions and you will begin to see it all around you. Get on the Metro or a bus or walk down the street and read all the “Signs” coming at you…
- Desperate
- Lonely
- Seeking
- Drunk or High
- Hysterical
- PMS’ing…
- Postal!!
- Crazy
- and eventually Sane and Happy
I have learned what sign all my “peoples” carry around above them and I love them any ways, even if some of them will never unplug or change the message flashing, for a few hours each week, I can reach them through ministry, and love them unconditionally. In the practice of “Letting Go” you stop and you unplug that sign for a while until you find an appropriate message to display. And that may take some time, and that’s ok, as long as you are working on yourself. You don’t have to be getting sober. These principles are universal and can be utilized by everyone – everywhere.
Sometimes the FEAR of Change or FEAR of being alone, makes us hang on to people and situations that baffle us, just because we don’t see the way out, or we are Un-Willing to see the solution, or we just FEAR…
“Fear is a great motivator for change…”
Everyone has the power to recognize when it is right to let go, when it is necessary to let go, and when it is crucial that we let go. Life will move forward and sometimes life asks of us to do things we may not necessarily like – but if the Gardner does not prune his rose bushes, how can they flower beautifully each season…
Ecclesiastes 3:1-8
Attributed to King Solomon
To everything there is a season, and
a time to every purpose under heaven:
A time to be born, and
a time to die;
a time to plant, and
a time to pluck up
that which is planted;
A time to kill, and
a time to heal;
a time to break down, and
a time to build up;
A time to weep, and
a time to laugh;
a time to mourn, and
a time to dance;
A time to cast away stones, and
a time to gather stones together;
a time to embrace, and
a time to refrain from embracing;
A time to get, and
a time to lose;
a time to keep, and
a time to cast away;
A time to rend, and
a time to sow;
a time to keep silence, and
a time to speak;
A time to love, and
a time to hate;
a time of war; and
a time of peace.
With all humility we ask for God’s blessing tonight on those who come to visit and read, that they may find peace and wisdom in the many pages of writings we offer here and may I always remember that I inhabit the man at the foot of the totem and not the eagle of top. That I am who I am, in all my humanity, without ego or arrogance.
We thank the creator for all good things…
Come so Far – Live to Tell
I have a tale to tell…
“I was three feet from the floor, gasping for air, trying to release my father’s hands from my throat, I looked into his eyes and wondered, if my feet would ever hit the floor again, have you ever been hit so hard that it sends your body flying across the room…
We all fall to the floor at some point, it’s how you pick yourself up that’s the real challenge. I’ve learned that there’s light even in the darkest places. I can’t blame my father for anything, you can’t rely on other people to make you happy, but I know deep inside he loved me…”
My father was that abusive too…
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Today is the 8th of July 2007. What can I say about today that I have not said already, what can I share with you that I haven’t repeated many times before? What words can I speak that would make you think about safe sex, monogamy and getting tested for disease!! I have shared with you all the history that there is to be said about the last 13 years. It is all over there in the “Pages” of this blog. Everything you need to know about what it was like, what happened and what it is like now. Both for HIV and my Addiction to drugs and alcohol. I’ve never kept anything from you my readers.
Yet, how many of my readers over the past years have indulged in behavior that would endanger them to disease, addiction and sickness? How many young men have I counseled into the next phase of their lives after getting their own diagnosis? I can count them all on two hands. I have spent a great deal of time over the last few years writing about my life, in a vain attempt to find some soul who would publish this work for the world to read, because really, how much traffic can one blog generate, without readers or being listed on other blog sites with world class traffic?
It has been 13 years, since that fateful Friday afternoon, when I was called to that office in Ft. Lauderdale to be told that I had AIDS and that I was going to die. The doctors at that time gave me 18 months to live. it seems that I knew people who were HIV positive or had AIDS already. But the reality of just how widespread HIV was in 1994 became known to me in short order. It seemed once you were baptized in blood, the vision of sick people became a norm. You knew what to look for. The pallid faces, the stupor of sickness and the sick deathly look of people who were marked with the signs of death, those who were visibly ill and has Kaposi Sarcoma.
You don’t see that much any more. I guess I got out of that fate. I wasn’t infected with the same strain that so many had been. I didn’t have a lot of things that my friends had. You see, they are all dead. Only Mark and I survive today from the Stud crew of so many years ago. Mark is one of them, he has had the issues that I have not. His body is falling apart faster than mine. I guess you can blame my husband for the food I eat, and the fact that we both need to loose a little weight. My take on fat is simple, I could be a waif and look sick and skinny! I fought for a long time for a body, then I grew up and got older. And the pills did that for me. I’ve been testing medications for as long as I can remember. It began with the first drugs – AZT and those experimental drugs that were being tested in the beginning.
After reading the stories of many people who have tested the medications that I am taking now, the Integrase, Norvir, TMC 114, and TMC 125, that I might start to get my girlish figure back! OH GOD I hope so… I would love to loose 20 pounds. There’s a goal for you to observe over the next year. I am down about 10 pounds now since starting this new regimen. My appetite is not as HUGE as it used to be. So maybe the turn around has begun.
I posted the pictures of the quilts here for you to see and to bear witness what I saw and what I lived. To tell you that all those men and boys were here once. They all had a location in my life time line. I knew all of them. Some of them were bar customers, some were employees and friends, and many of them were entertainers and singers and artists. They are all up there hoping that I stay down here longer than they did, many of those men were much older than I was when i was diagnosed, by ten years or more. But many people who died of AIDS back then were not much older than I was. I was 26 when I was diagnosed. And in twenty four days, I will be FORTY!!!
Holy Shit!! I lived to see my 40th birthday !! And they said I was going to die! Not once, not twice, but three times ….
What has changed? I stopped the wanting to die. I stopped waiting to die. I stopped hanging around all those bitter queens who do nothing but gather together to rip each other apart like vultures. I stopped drinking (again) I stopped the drugging (once and for all!) I met a man I loved – and I got married !!! Monogamy looks harder than it really is, really, believe me. You can love one man forever. Even if sex isn’t what you want or how you want it, when shit happens, you can know that you stayed the course and that you did not walk. You commit and you stay! You want what I have, write down those vows and tack them on the fridge and every day you recite them to yourself and to your hunny! When you get to the point that you believe them and can maintain them, THEN you get married…
Don’t do stupid things. Don’t trick with dirty partners. Don’t share needles, don’t have unprotected sex, DO USE a condom. Love yourself enough to never have to ask the question…. “Are you positive?” Live with the certainty that every one else IS and protect yourself first, because if you don’t nobody else will. Do the right thing, and for the Love of God, don’t get sick or infected. You can prevent forest fires. I can tell you that changing drugs after 10 years of being on the same drugs is daunting. I am not 26 any more and I have to re-acclimate myself to new medications, and that is never an easy task. But this time hasn’t been bad at all, thank the creator…
Please take care of yourselves and be good to one another. Love each other and take care of each other. Be confident and strong gay men and women. Be confident and strong straight men and women.
- Wasted Time is Wasted Time
- Time is a precious commodity once wasted it can never be regained
- Worrying is like sitting in a rocking chair, you are moving but getting no where.
- Expectations are pre-packaged resentments
- There are no justified resentments
- Drop the Rock!!
- Grudges and Bitterness is so 1980′s …
- Stop dragging around that Samsonite luggage, drop it where you stand and walk away from it and don’t pick it back up
- Live and Love
- The Past is just that, the Past. It only affects you if you allow it to!!!
- Stay in your day – all we have is 24 hours in each day so make those hours count
- Live – Easy – But – Think – First
End of sermon… I lived, today is the 13th time I will write an anniversary post.
The Wisdom of Star Wars …
1. Episode IV: Star Wars – A New Hope, Were we all that young once, 1977? I was 10 years old when Star Wars opened. I was in New Britian Connecticut and we saw the movie at the Twin City Theatre, across the street from Twin City, a department store that my mother worked at when I was a young person. I have memories of that time, for some strange reason. A lot of them.
I loved movies and I went to the movies every chance that I got. Along with music and reading, I had free access to go anywhere I wanted at a moments notice. Over the last forty years, we see certain movies come and go – we collect them like wisdom manuals for future reference.
Did we think then, that Star Wars would have such an effect on young people as it did then? I know adults who were in my life at that time, who did not take to the archetypal themes and wisdom as the young people did over the years – as the following films made their debut’s.
2. Episode V: The Empire Strikes Back, came out in (1980) I was 13 years old.
and it had a huge effect on me. I remember sitting in the back of the theatre at “The Falls” in Miami when it came out. I was in junior high school. The Star Wars movies repeated throughout my life. We watched them like time markers at certain life intervals. To see how we had changed and evolved since the first time we watched them.
I was at Movie Land today and I was looking for something to watch on DVD, and I had picked up a couple movies, but then after wandering around, I ended up in the Science Fiction section and I was thumbing through the Star Wars movies. And brought Episodes IV, V and VI home.
I find myself watching them again, and I posted the Yoda sayings and I mused on the fact that for me, I have followed most of that advice over the years. That Star Wars did play a factor at the way I see the world around me and live my life. It may have been slow and coming and sometimes seemed to stop all together, but in the end, we find our selves here, discussing the spiritual teachings of The Archetypal figures from Star Wars and the value of the Star Wars wisdom.
You imagine, or I imagine, what the world would be like, if the adults of that time, took to the figures in the movie, would life have changed much or very little? If the world was in a different ‘place’ spiritually, economically and socially? I think those of us who grew up in the light of Jedi Wisdom benefitted more from it than perhaps our parents.
3. Episode VI: Return of the Jedi, came out in (1983) I was a junior in High School at age 16.
That was a very impressionable time in my life. A lot of personal and emotional upheaval. I lost my grandparents, and my parents were in self destruct mode, and let’s fuck up the children mode. So any escape out of reality was fantastic.
4. Star Wars Episode 1: The Phantom Menace, came out in (1999) I was 32 years old.
I was amid one of the most painful periods of my life. Being far away from anything in the middle of no where did not help me. I was in slip-self destruct mode. I was living with evil incarnate, and I had that battle with the Dark Side that almost cost me my life. But somewhere in the universe there was the force, because it saved me from imminent death.
5. Star Wars Episode 2: Attack of the Clones, came out in (2002) I was 35 years old.
Ah, the light at the end of the tunnel had come. I was on my way to a new life in another country, sober and cleaned up. I was going to finally make something of my little life, which up until then had not gotten very far. Gay boys with HIV did not get very far in the united States, some have succeeded, but I did not. It was either a life of substandard poverty or a move to greener pastures. I was in Montreal by Spring 2002, I was on my way.
6. Star Wars Episode 3: Revenge of the Sith, came out in (2005). I was 38 years old.
The watershed movie of the Summer, the final episode of the Star Wars Saga was coming. We would finally have the last installment of the six films – where we learn how Vader came to be and where Luke and Leia came from and where they grew up. The journey was coming to an end. I had lived 40 years to see the culmination of George Lucas’ dream come to fruition.
How did Star Wars affect you in your life? And what reflections do you have over the last 40 years, in regards to the way you live, and how certain films made an impact on you throughout your life!
We will discuss this topic in Comments:
Do or Do Not …
NO!! Try Not …
DO, or DO NOT!! – There is no TRY!!
Fear leads to anger.
Anger leads to hate.
Hate leads to suffering.
If once you start down the dark path, forever will it dominate your destiny, consume you it will, as it did Obi-Wan’s apprentice.
A Jedi uses the Force for knowledge and defense, never for attack.
The dark side is quicker, easier, more seductive.
Only different in your mind. You must unlearn what you have learned.
Try not. Do. Or do not. There is no try.
Size matters not.
Your ally is the Force. A powerful ally it is.
Life creates it [the force], makes it grow. It’s energy surrounds us and binds us. Luminous beings are we.
You must feel the Force around you.
Through the Force, things you will see. Other places. The future…the past. Old friends long gone.
You must learn control.
Difficult to see. Always in motion is the future.
Only a fully trained Jedi Knight with the Force as his ally will conquer Vader and his Emperor.
If you choose the quick and easy path, you will become an agent of evil.
Strong is Vader. Mind what you have learned. Save you it can.
When nine hundred years old you reach, look as good you will not. Hmm?
Vader. You must confront Vader. Then, only then, a Jedi will you be. And confront him you will.
Do not underestimate the powers of the Emperor
Medication Journal Entry #1
Day 1 – Saturday June 30th 2007 – Medication Journal Entry #1
Night Dose:
Norvir (100 mg ) 1 pill twice a day
Prezista – Darunavir TMC 114 (300 mg) 2 pills twice a day
TMC 125 (100 mg) 1 pill twice a day
Integrase (100 mg) 2 pills twice a day
Time: 10:28 p.m.
It's All About Me !!! Episode 1
This episode is brought to you by the Motion Picture: Trick
Thank God it’s Friday. The weather is beautiful outside, there is a light breeze and the temperature is sitting at a comfy 22c. It was a busy day today. I had to go to the clinic and drop labs, that is always fun. I had to fill out a questionnaire for the TMC 125 drug that I am taking now for the study. The common list of symptomatology and emotional status in the last four weeks.
I love those questionnaires because I leave little obnoxious comments on the page along with my answer like:
1. Do you feel good about yourself? Why of course, I am always slap dash happy!
2. Have you thought about killing anyone lately? No! But now that you mention it!!
3. Have you been depressed in the last four weeks? No, not really, but if you really want my sob story for the month I can tell you about it. And this one really made me laugh,
4. You are “Somewhat sick” — WTF? Are you kidding? This must be a trick question! I’ve got HIV, is that somewhat sick? Does that make me somewhat sick?
5. Have you thought about hurting yourself in the last four weeks? Um, Not really!!
6. Do you have any complaints (medically, sexually, emotionally)??? Well, now that you ask!!
I will have to fill out this questionnaire every time I go into the clinic to follow my progress with the new medications. They are serious questions, I was just in that kind of mood this morning to be catty! Someone at the other end will get a good laugh out of me at least.
After I finished at the hospital I headed over to the village to look see the goings ons, since I needed to get out of the house for a while. I went over to the new “North Bound Leather and Fetish shop, since I had not seen the renovated store. It is quite beautiful. With state of the art display cases with the trinkets and jewelry, and they painted the walls which brightened up the space a great deal.
Then it was off to Priape for a little impulse shopping. And to see the boys – Pride is gearing up quite nicely. Ste Catherine’s street is blocked off in the village and there are terraces in front of all the bars and restaurants for outdoor dining.
The village is hosting an art show right now. I did my shopping and headed home. The trains were PACKED because the Montreal Jazz Festival is in town until the 11th of July. So there are a bunch of festivals going on at the same time, really, you could leave home in the morning and be occupied all day and night. Here is the list as it goes:
- The LotoQuebec Fireworks Festival
- The Montreal Jazz Festival
- The Village Art Show
- Pride will be in a few weeks
I had to pick up the rest of my meds at the pharmacy on the way in. To give you an idea about the cost of HIV meds here – This was my bill today:
- Prezista – Darunavir (300mg) Insured: $23.65 Uninsured: $862.78
- Norvir (1oomg) Insured: $0.00 Uninsured: $93.42
- Incidental Medications Insured: $30.57 Uninsured: $75.79
- TMC 125-C214 (Clinic Distribution) I don’t have these costs yet.
- Integrase (Clinic Distribution) I don’t have these costs yet.
GrandTotals: Insured: $54.22 (What I pay p/month) — Uninsured: $1031.99
Thank God I live in Canada…
PODCASTING!!
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Would you like to see “All About Me on Video?” Since traffic here has spiked over the last few weeks, I thought about putting up some pod casts. So send us your questions, concerns and pecadillos and we will start posting those videos for you very soon.
This concludes All About Me Episode #1
New HIV Medication Regimen
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For more information on these meds and test regulations and availability worldwide go to this link: http://www.mcgill.ca/microimm/department/associate_adjunct_prof/wainberg/ Most doctors around the world have access to test information and access points for these meds as some of them have not been approved in the U.S. and in other parts of the world. I DO NOT know if these meds will be made available in Africa as of yet, as most of them are still in test phase. I don’t have information as to where these meds are being researched world wide, but Dr. Wainberg can help you with your inquiries. I would talk to your front line primary HIV / AIDS doctors and inquire about the new meds on the formulary and in test and research phases. NOTE: That your labs will be checked prior to being given access to new meds and they are quite strict here by lab results and acceptance parameters. |
Ugh. So it begins again.
This Friday I will begin these new drugs when my local pharmacy receives some of my meds. These four drugs based on my Geno-Pheno typing information on my last checkup tells us that these drugs used in conjunction should produce great results as my doctor is confident that this mixture of meds will work. He attended a seminar this week about these meds and studies have been very promising.
Some of the meds, as stated below are not YET on the market, even here, but I am getting them through expanded release on governmental approval, and a selection process based on current lab work collected at the clinic site. Drugs released to patients on expanded release are closely monitored and approved based on current labs that will be checked every six weeks, once treatment has begun.
I have to drop labs once this week for baseline numbers – then repeat labs every six weeks after treatment begins.
I have already begun to loose weight now that I am off the Zerit, Videx EC and Viracept regimen that I was on. I have been on a drug vacation for a month now, as my body is starting to change. I am also on a new diet – less sugar, diet drinks and juices, and a lower cholesterol and carbohydrate meals.
Here is the drug information for those of you who might be interested.
1. TMC 125 (Etravirine) 100 mg. Twice a Day (BID)
What is Etravirine?
- Etravirine is in a category of HIV medicines called non-nucleoside reverse transcriptase inhibitors (NNRTIs). Etravirine prevents HIV from entering the nucleus of healthy T-cells. This prevents the cells from producing new virus and decreases the amount of virus in the body.
- Etravirine will need to be used in combination with other drugs. Clinical trials will evaluate its effect in combination with other drugs, including protease inhibitors (PIs) and nucleoside reverse transcriptase inhibitors (NRTIs).
What is already known about Etravirine?
- The etravirine dose being studied in phase III clinical trials is two 100mg tablets taken by mouth, with food, twice a day.
- Like other NNRTIs, etravirine might interact with other medications, including those used to treat HIV. It is important that your personal physician and/or the research nurse or study investigator be aware of all drugs you are taking, including those you buy without a prescription.
- It is expected that etravirine, when combined with two nucleoside analogues, will have strong activity against HIV in people who have never taken an NNRTI in the past.
- In clinical trials, the 800mg twice-daily dose was considered to be the safest and most effective. However, a new formulation of etravirine is being tested. Instead of 800mg twice-daily, the new formulation will allow for a much lower dose: 200mg twice-daily.
- It is not clear how effective etravirine is against strains of HIV that are already resistant to currently available NNRTIs. All of the currently marketed NNRTIs are highly cross-resistant to each other. Test tube data suggest that etravirine might be effective against strains of HIV that are at least partly resistant to any of the approved NNRTIs. But this cannot be determined until information from clinical trials is made available.
2. TMC 114 ( Prezista – Darunavir) 600 mg. Twice a Day (BID)
What is Prezista?
- Prezista is an anti-HIV medication. It is in a category of HIV medicines called protease inhibitors. Prezista prevents cells infected by HIV from producing new virus. This reduces the amount of virus in your body.
- Prezista must be used with low-dose Norvir® (ritonavir) and in combination with at least two other anti-HIV drugs.
- Prezista, manufactured by Tibotec (a division of Ortho Biotech Products), was approved for the treatment of HIV by the U.S. Food and Drug Administration (FDA) on June 23, 2006. Prezista, combined with Norvir, is only approved for HIV-infected adults who have tried other anti-HIV drug regimens in the past. This includes people who have HIV that is resistant to more than one protease inhibitor. It is not approved for HIV-infected people starting anti-HIV treatment for the first time.
What is known about Prezista?
- Prezista has a different structure than other protease inhibitors and is active against strains of the virus resistant to other protease inhibitors that are currently available.
- The correct dose of Prezista is 600mg twice a day (two 300mg tablets twice daily) plus 100mg Norvir twice a day (one 100mg capsule twice a day). Norvir is necessary to help keep levels of Prezista high in the blood, which is very important for the drug to be effective.
- At the present time, Prezista is only approved for HIV-positive people who have tried other anti-HIV medications in the past. However, once-daily Prezista is currently being studied in clinical trials for HIV-positive people starting treatment for the first time (two 400mg tablets combined with one 100mg Norvir capsule once a day).
- Prezista, combined with Norvir, should be taken with food. The type and amount of food is not important. In other words, Prezista/Norvir can be taken with a full meal or a light snack.
- Prezista is recommended by the U.S. Department of Health and Human Services (DHHS) for HIV-positive people who have tried and failed other protease inhibitors in the past. It is not recommended by the DHHS for patients who are new to anti-HIV treatment or starting a protease inhibitor for the first time.
- Clinical trials have demonstrated that Prezista is an effective option for patients who are not likely to respond to older protease inhibitors, especially when it is combined with other anti-HIV medications that a patient’s virus is still at least partially sensitive to.
- Prezista works best when it is combined with anti-HIV drugs that the virus is still sensitive to. However, this can be challenging for HIV-positive people who have tried several anti-HIV drug regimens in the past. Drug resistance tests, such as genotypic assays and phenotypic assays, and treatment history, can be very useful in figuring out which anti-HIV drugs the virus is still likely to respond to.
TMC114, now called Prezista, has since been licensed in Canada, while access to TMC125 remains restricted, and I am receiving it on expanded release through the clinic.
3. Integrase Inhibitor ( MK0518 – Raltegravir) 400 Mg Twice a Day (BID)
I am receiving this drug via expanded use through the clinic.
One of the critical steps in the HIV life cycle is the integration of the virus’s genetic information into the host cell DNA. This allows the host cell to turn into a “HIV factory” and produce many, many virions each hour. The enzyme integrase is the enzyme that accomplishes this task. Integrase inhibitors serve to stop this enzyme.
Integrase inhibitors are oligonucleotides, which are small segments of DNA or RNA that are synthetically prepared. Modified oligonucleotides can serve to block RNA/DNA interactions and modify protein or enzyme synthesis.
One drawback to integrase inhibitors is that it only has one chance to act for each cell. If it fails, any further attempts are futile since the genetic information is already incorporated. In contrast, NRTI’s have thousands of opportunities to act during the process of reverse transcription.
From: Wikipedia
The integrase protein contains three domains:
- an N-terminal HH-CC zinc finger domain believed to be partially responsible for multimerization,
- a central catalytic domain
- a C-terminal.
Both the Central catalytic domain and C-terminal domains have been shown to bind both viral and cellular DNA. Currently no crystal structure data exists with Integrase bound to its DNA substrates.
Biochemical data and structural data suggest that integrase functions as a dimer or a tetramer.
Additionally, several host cellular proteins have been shown to interact with integrase and may facilitate the integration process.
Integration occurs following production of the double-stranded viral DNA by the viral DNA polymerase, reverse transcriptase.
Integrase acts to insert the proviral DNA into the host chromosomal DNA, a step which is essential for HIV replication.
Integrase catalyzes two reactions;
- 3′-end processing, in which two deoxynucleotides are removed from the 3′ ends of the viral DNA.
- the strand transfer reaction, in which the processed 3′ ends of the viral DNA are covalently ligated to the host chromosomal DNA.
Integration of the proviral DNA is essential for the subsequent transcription of the viral genome which leads to production of new viral genomic RNA and viral proteins needed for the production of the next round of infectious virus.
Essentially, integrase is a key step in allowing viral DNA to become a permanent member of the host genome. This integrated proviral DNA is then translated using host cell machinery (see translation) into viral proteins.
HIV integrase is a 32 kDa protein produced from the C-terminal portion of the Pol gene product. Integrase, therefore, is an attractive potential target for new anti-HIV therapeutics.
In November 2005, data from a phase 2 study of an investigational HIV integrase inhibitor, MK-0518, demonstrated that the compound had potent antiviral activity, and the manufacturer, Merck, is undertaking further clinical studies. [1][2]
It is important to note that there are currently no FDA-approved integrase inhibitors available to the public.
4. Norvir (Ritonavir) 100 mg. Twice a Day (BID) Protease Inhibitor
What is Norvir?
- Norvir is an anti-HIV medication. It is in a category of HIV medications called protease inhibitors (PIs). Norvir prevents T-cells that have been infected with HIV from producing new HIV.
- Norvir is manufactured by Abbott Laboratories. The U.S. Food and Drug Administration (FDA) approved it for the treatment of HIV infection in 1996.
- Norvir is one of the two drugs in Kaletra®. Kaletra contains the protease inhibitor lopinavir and small amounts of Norvir.
What is known about Norvir?
- The official Norvir dose for adults is six 100mg capsules twice a day. However, this dose is rarely used anymore because it is associated with a number of side effects. However, Norvir is still being usually used at much lower doses (one or two 100mg capsules twice a day) to help boost the levels of other protease inhibitors in the bloodstream.
- Norvir has been approved for use in children 1 month of age and older. The dose will depend on the child’s body size. The dose should be between 350 to 400mg per square meter of body area, twice a day. As the child grows, the dose will increase. However, the dose should not exceed 600mg twice a day. The starting dose should be 250mg per square meter of body area. Every 2 to 3 days, the dose should be increased by 50mg, until a total of 400mg per square meter of body area is reached. For children who cannot tolerate a dose of 350 to 400mg per square meter of body area, alternatives to Norvir should be tried. To learn about treatment options for children, click here.
- Norvir, even if low doses are used with another protease inhibitor, should be taken with a meal or light snack.
- Refrigeration of the Norvir capsules is recommended but is not necessary if they are used within 2 months and stored below 77° fahrenheit (25° celsius).
- All of the protease inhibitors are broken down (metabolized) by the same family of enzymes in the liver. In order for the protease inhibitors to be metabolized by these liver enzymes, they must first either slow down its activity or speed it up. All of the currently approved protease inhibitors slow down the activity of these liver enzymes. Norvir is the most powerful of all the protease inhibitors in this regard, even when low doses of the drug are used.
- In turn, Norvir can prevent other protease inhibitors from getting to the enzyme, causing levels of these other protease inhibitors to increase in the bloodstream. This can make the other protease inhibitors more effective against HIV. It also means that lower doses – or less frequent daily doses – of these other protease inhibitors can be taken. This is why low doses of Norvir are often combined with other protease inhibitors: to make them more effective and easier to take.
A jumbled mess of emotions…
I am sad, I am confused, I am human, and I am far from perfect. I finished my final exam this morning in record time, which surprised me that I knew ALL the answers to all the questions AND I rocked on the two essays we had to write on. BooGah!!!
I picked up my gown yesterday and I was a bit emotional to ponder the thought that in a few days I will complete an entire journey in University and I did quite well for a man my age, with the issues I deal with on a daily basis. My friends are all happy and proud of me and that feels nice. I don’t know, still how I feel about completing this section of the journey because the journey just continued into the Summer and today is the last day of classes for me for the Summer. Woo Hoo!!
I finished my term paper days early so that I could turn it in tonight and take the rest of the week to prepare for Monday. I need a day of beauty and some coiffing before I strut across the stage. I kinda want to do a ‘Patch Adams’ and march across the stage butt ass naked and do the happy dance. But no we must be proper and demure. UGH!!
Yesterday was very emotional. I did not sleep most of Monday night into Tuesday and I was up with the birds – do you know that the sun rises between 4 and 4:30 a.m. here!! WTF. If you are lying in bed and you hear the birds start to sing, it is a forgone conclusion that you will not get back to sleep – or to sleep because once the birds start singing the noise from the ground level starts to rise. The trucks start revving and the air conditioner tower on the college next door starts to run loudly and the hotel delivery trucks start their morning runs next door – so you get that annoying ‘beep – beep – beep’ drive the damned truck forwards for Christ’s sake… The sirens, the traffic, the noise…
“Calgon – take me away…”
I had all my plans prepared for termination of my position at my home group because I was angry and resentful that someone would do what I was told was done to people I work with on a weekly basis. I went to have coffee with Ms. Nikki and told her my intentions and she sobbed and cried that I would think to leave. I was heart broken. We went to set up and as certain folk arrived I spoke to my mentors and they gave me sound advice. I listened to every word and weighed my decision heavily.
Ms. Nikki lobbed a prayer up to God and within minutes it was answered. God was communicating directly and succinctly. My boys all came to the meeting and we had a serious discussion before hand, and I clarified the truth from fiction. I admit I was wrong and that I got caught up in drama that was not mine and that certain folks have issues that I did not carefully weigh into the conversation as it happened in the last week. Like I said “always, never, forget to check your references.”
The meeting was great. I sit here conflicted emotionally because I know where my heart lies and who are important to me. I can’t walk away from my people because certain people have issues and grudges. I should have never entertained the insanity factor that started this whole issue to begin with, I should have left it well alone. But, I am human and I listened to the pied piper because he sang this silver tune that drew me into the web of deceit and insanity, and I didn’t see the fall before it was there.
Before the meeting started I had said to Ms. Nikki that I wasn’t going anywhere and after the meeting I cried all the way home. The avalanche of emotions was just too much to bear at that moment. Thanks God I was with Ms. Louise to talk me through it before I dropped her at her building up the street from home. We all live in the same neighborhood.
I came home and was awash in emotions. I wrote a little. I created a few more header images for my blog. It is very calming to be creative and work with crafting images and colors and sizing and templates. I quite enjoy that work – This new header image, at the top of the Blog, is one of my latest creations. I quite like it. I have several new images with different themes and colors with specific images that have some meaning to my life and journey.
I watched some tv last night, we are in re-run hell now but there are a few shows I enjoy watching like So You Think You Can Dance and Canadian Idol starts up again so we will have certain entertainment.
After Peter went to bed I checked my email and got the obituary notice for Shirley, and I sat here and cried again. I meant to call my friend last night when I got home, but the little voice inside me said to wait – so I did. It was after 1 a.m. when I got the email, and as I was typing into my blog and trying to reply – the freaking modem went down at the main frame of my internet service provider. I was like WTF??? So I did not get back onto the main frame until almost 2 a.m. I wasn’t going to bed with unfinished business on my desk.
I am sad today – because my friend is exhausted and has been through so much since Christmas that I can’t even begin to imagine where she is today, and what do you say to try and comfort someone without sounding trite quoting platitude after saucy platitude. Ugh, I wanna throw up. I care and I am here and she knows that. So I guess, between friends, sometimes, words are unnecessary, that just being together is more important than trying to find words of comfort that are just going to come out and sound rehearsed and stupid. I’ve never buried a parent, but I mourned their passing out of my life and I buried them spiritually in order to continue living my life. But the only burial experience I have is my grandparents and they were closer to me than my own parents. Go figure!!
I can only imagine the sense of loss in loosing both parents within months of each other after long bouts of illness and suffering. I just can’t imagine the pain, but I can identify with the loss. Where practical experience fails me I must draw on spiritual teaching and what I have experiences to try and make sense of things like this. I imagine myself standing at Shelby’s casket quoting Annelle:
“When things like this happen I try to make sense of it, and I for one am glad that Shelby is with her King, where the is no more suffering and no more pain, and that Shelby will always be young, she will always be beautiful and she will always be an angel and I for one am glad to know that there is someone up there on my side…”
“Well, you just go on Annelle, I’d rather have her here!”
“I’m fine, I’m fine, I’M FIIIIINE…. I can run to Texas and back but my Shelby can’t. I want to know WHYYYYYY, I want to know if her son will ever know how special his mother was….”
“Go on hit her, Knock her lights out, Chickapin Parish take out their eye teeth out to take a WHACK at Wheezer!!! Go on, Smack her.” Clairee, have you gone insane???”
You gotta have some levity and laughter at a moment like this, things were getting too tense, we needed to laugh. Clairee, you are too twisted for color Tv, get your roots done.
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So this afternoon I see my doctor to start these new medications, finally !!! So I will have updates coming in the next few days and weeks. I have lost some serious weight, which is a very good thing, my doc will be happy for that, since he thought I was getting way too chunky for his liking. And this evening I have my Theology Abstract presentation and the handing in of my final paper and I am done with school for the Summer!!
EDIT:Update – New meds are on hold until my doc gets approval from the government on meds that I need, since my genotype shows that I can’t use some of the meds, so we need to clear some more for On Deck treatment. Stay tuned for further updates.
YAY…
We pray for Shirley
Eternal Rest Grant Her and may Perpetual Light Shine Upon Her
Until later…
ttfn
Summer Transition
The blog world gets smaller over the Summer as friends and fellows depart on their sabbaticals, and people go on vacation for extended periods of time. I have paired down my read and blog list as bloggers go off line. With the decision to remove myself from the anchor position at my home group, I am pairing down my volunteer work as well. I’ve given all the free advice and religious education that I can take for now.
I’ve spent the last two years working closely with people who have no desire to change and I can’t protect people forever, nor can I expect to affect change where people are constantly working against me. That has disappointed me the most. That people who know the rules about taboo are so readily motivated to break those taboos.
Some people are sicker than others.
I think it is important to refocus my attentions on projects that demand more of my time, so that I can do my work completely and confidently. This Summer I will be working with my kids very closely as the building of my ministry starts to grow. I have work that has been asked of me, and I must respond to that call.
As we transition from classes to the living of life and as well, my transition into the work field in advisement and counseling takes center stage. I realize that sitting where I have been for so long in the rooms has not moved anyone forward, but I have. I have been told that the only way to allow people to grow for themselves is to allow them to do so without my enabling them to remain where they are. I have said all that I can say to help those who are listening. And I can’t be part of a community that has worked so hard to disrupt the calm, safe and sacred space that my home group had become – but is now gone.
We will continue to write over the Summer as I work on my new manuscript and get that finished by Summers end. I want to write something really great, that will present the work that I have done over the last decade of my life and the lessons I have learned.
Today I received an invitation to become part of the Alumni Society at Concordia. As graduation looms ever closer, the nerves are starting to ignite. I have to get my gown next week and take photos for my Alumni Card and get ready for graduation.
I still have a paper to write for my Theology class, which I have to seriously work on over the next week for a Friday completion deadline, I will be concentrating on that over the weekend.
We are all evolving in our own special ways and some of us are taking time to reassess our blogs and the future of writing. I am doing the same here. I am pulling away from the drama and those people who seem to be stuck in ruts that all the words in the world will not remove them from, until they decide they’ve had enough.
Stay tuned and please come and read – there are a multitude of posts to read over in the pages section of the blog as well as the archives. We will be walking a spiritual journey as we continue our training for Spain in 2009.
I start the new HIV meds next week so look forward to that info for those of you who are HIV positive and are thinking about a medication change. I will also be dropping some serious labs to start the new regimen they told me last week.
This is the last week of school for Summer Session 1 – I will have more time to dedicate to writing and ministry work, as graduation quickly approaches. Thank you for your readership and I hope that you will all stick with us over the Summer.
**** Summer Events ****
- We will begin Christian Meditation on Wednesday Nights at the Christian Meditation Center located within the Padua Center at the Georges Vanier Metro below the tunnel, not far from here. That meditation session begins at 8:00 p.m. and a $5.00 donation is requested for attendance.
- If you want to join us on walks up the mountain as part of the Camino Santiago de Compostela training group, do let us know. As weather permits we will be walking the mountain and also, we will be adding different walking tours of Montreal including the Old Port and on up the Orange line from Berri through St Denis and St. Laurent.
- The Harry Potter Party will take place on the 21st of July. A huge party is planned at Indigo Book shop in Downtown Montreal. Also the release of the 5th Harry Potter film, Harry Potter and the Order of the Phoenix has its opening on July 11th, 2007.
- The L’international des Feux Loto-Quebec opens on the 20th of June with the first performance by Spain at La Ronde here in Montreal. We usually walk the Jacque Cartier Bridge to the end of the Superstructure to watch them from above the park. The fireworks begin promptly at 10:00 p.m. rain or shine.
- The Festival International de Jazz de Montreal takes place this Summer from June 28th through July 5th, around the Place des Arts Center in Downtown Montreal.
- The Montreal Divers/Cite Gay Pride Festival takes place in the village on the East End of the city from August 1 to August 5th, 2007. Not as big as last years event due to the lack of government funds this year.
EU Drug Regulator Recalls AIDS Drug Over Contamination Fears
I flushed my meds down the toilet with the first report. I am not taking any chances that this threat will cross the pond and we will all be sorry. This report states that Canada and the U.S. are not affected. But you never know. Better to be safe than sorry…
by The Associated Press
(Zurich, Switzerland) Europe’s drug regulating body is recalling an HIV treatment made by Roche Holding AG because of contamination.
“Contamination has been identified at the manufacturing stage…the steps taken to recall Viracept go down to the level of the individual patient,” said Michael Harvey, a spokesman for the European Medicines Agency.
Patients taking Viracept _ an antiretroviral agent for use in HIV therapy _ should return the treatment to their physician and request a replacement therapy, Harvey said.
The recall does not affect the use of Viracept in the U.S., where Pfizer Inc. (PFE) sells the drug, or Canada and Japan, Roche said.
The Swiss pharmaceutical company conducted a chemical analysis on the drug after six patients reported that their batches of Viracept emitted strange odors.
“A detailed chemical analysis of the affected tablets showed they contain higher than normal levels of methane sulphonic acid ethylester,” the company said.
Roche said in a statement that it is recalling all batches of Viracept in co-operation with the European watchdog and Swissmedic, Switzerland’s drug regulator, in Europe and in some undisclosed countries.
Roche said the financial impact of the recall is negligible.
©365Gay.com 2007
This is news to me … 10 years later
I spoke to my doctors office today (June 7 2007) AND the pharmacy here that supplies my meds and they tell me that Canada and the US have NOT been affected by this recall. If we are notified they tell me all patients will be notified immediately.
Cancer alert over anti-HIV drug
Viracept reduces the amount of virus in the body |
People on anti-HIV drug Viracept are being warned batches of the therapy may have been contaminated with potentially cancer-causing chemicals. The Medicines and Healthcare products Regulatory Agency put out the alert after makers Roche moved to recall all batches of the drug in circulation.
The watchdog said patients prescribed the drug should “contact their doctor immediately” to change medication.
It is thought there are about 550 people using the drug in the UK.
Roche said contamination had been caused by “human error”.
Viracept, also known by the generic name nelfinavir, works by reducing the amount of virus in the body.
 |
Roger Pebody, of the Terrence Higgins Trust |
It is essential that people who are taking it go to their doctor immediately in the next day and work out with their doctor the best way to proceed 
The drug is a protease inhibitor, a class of drugs that helped revolutionise HIV treatment in 1990s.
Such drugs slow down or prevent damage to the immune system, and reduce the risk of developing Aids-related illnesses.
Viracept received marketing approval in the US in March 1997 and in the European Union in January 1998.
It is licensed for use in combination with other anti-retroviral drugs.
The MHRA said there were fears the drug had been contaminated with a genotoxic substance, which is one that can affect the genes and potentially cause cancer.
Reports
A spokeswoman for Roche said there was no indication that the contamination was deliberate.
“Roche has received several reports that some batches of Viracept 250 mg tablets have a strange odour.
“A detailed chemical analysis of the affected tablets showed they contain higher than normal levels of methane sulfonic acid ethylester.
“In the interest of patients safety Roche has decided to recall all batches of Viracept tablets and powder.”
Roger Pebody, treatment adviser for the Terrence Higgins Trust, said the drug was in one of the older classes and was not widely used in the UK now.
He said missing just one dose could lower the effectiveness of the overall course of treatment.
“These people have probably been on the drug for several years and it has worked well for them so they have had no reason to change it.
“It is essential that people who are taking it go to their doctor immediately in the next day and work out with their doctor the best way to proceed.”
TMC 125 (Etravirine) and TMC 114 (Prezista)
This article comes from BC PWA news letter. I publish this article because I will be taking these meds starting next week. (TMC114 – Prezista-Darunavir and TMC125 – Etravirine)
Article 2
Drugs Produced Dramatic Change In HIV Patient
Tiko Kerr was at death’s door in January 2006 when a new treatment was begun
May 02, 2007
The human immunodeficiency virus could have killed Vancouver artist Tiko Kerr 20 years ago, just as it claimed so many other promising lives.
Instead, his successful battle to live is now propelling him on a whirlwind world tour, talking to drug researchers, doctors and scientists about his story of survival and the two controversial AIDS drugs that helped him beat the odds.
“I’ve really come to the conclusion that the worse you have to go through, the greater the reward,” Kerr says of his dramatic change in fortune.
The tour began in December, when Kerr, just shy of the one-year anniversary of his initial treatment with TMC114 and TMC125 as part of a small clinical trial at St. Paul’s Hospital, traveled to New Jersey where he was invited to speak at the corporate headquarters of pharmaceutical giant Johnson & Johnson, and its subsidiary, Tibotec, which developed the two drugs.
Colouring his talk with a mini-retrospective of his paintings over 25 years, Kerr related his own sometimes desperate struggle with the virus since his diagnosis in the mid-1980s. “You kind of lived your life in gulps,” he said of his mindset at the time he was told he was HIV-positive.He also told of his life-and-death fight with his own government in order to gain access to the drugs.
Immunity To Treatment Developed
In 2005, clinical research on (TMC114 – Prezista-Darunavir and TMC125 – Etravirine) had caught the attention of Kerr’s doctor, noted HIV researcher Julio Montaner. The drugs appeared to be successful at suppressing HIV in long-term patients, such as Kerr, who had developed an immunity to other treatment options.
Montaner applied to Health Canada for limited access to the drugs on compassionate grounds on behalf of Kerr and a handful of other dying HIV-positive men in Vancouver.
At the time, Kerr was very ill. The HIV in his body had risen to alarming levels as more conventional drug therapies used to keep the virus in check failed. Doctors feared he would be dead within a year without new treatment.
For months, Health Canada refused to grant the necessary access. Officials finally relented in January 2006, after significant public pressure. By then, one of the Vancouver men waiting for the treatment had died.
New Therapy Begun
TMC114, now called Prezista, has since been licensed in Canada, while access to TMC125 remains restricted. Kerr began treatment with the new therapy in January, 2006. Within five days, Kerr’s viral load fell a dramatic 90 per cent. Today, Kerr’s HIV levels remain virtually undetectable. Other patients involved in the study have shown similar results. The presentation, which wrapped up with Kerr’s remarkable return to health within days of beginning treatment, brought the house down.
“They were moved to tears,” Kerr said of the audience, which was made up mainly of Johnson & Johnson staff scientists eager to hear how effective the drugs can be. “I had no idea . . . that the research and development staff had never even seen a pill they had designed. They are just so far ahead of the process,” Kerr said.
This January, he was invited again to speak, this time to staff in Orange County, Calif. In March, he travelled to Dresden, Germany to mark the widespread availability of Prezista in Europe. This month, he’s off to Paris. Then it’s on to Madrid, Milan and a destination yet to be scheduled somewhere in Africa.
A hectic schedule, to be sure, but Kerr is thrilled to share his story. It has also given him a whole new perspective on his work as an artist. “I was astonished to realize how the virus had such a profound effect on my work,” he said. “When I was feeling strong, I painted in a vital and dynamic way . . . and when I was feeling weaker, my work was more timid, the subjects more cautious and desperate.
“There were these peaks and bumps that I could immediately see and I had no idea,” he said.
Today, life couldn’t get much better for Kerr. He’s happier and healthier than ever — “scary healthy,” he said. His paintings, which fetch between $5,000 and $27,000, are more in demand than ever. And he and longtime partner, Craig Shervey, exchanged vows in a low-key wedding ceremony at the couple’s West End home in February. Shervey wrote his own vows, while Kerr recited the Elizabethan poem My True Love Hath My Heart And I Have His.
It’s a long way from December, 2005, when Kerr, then still awaiting access to the TMC drugs, had grimly painted a piece he entitled My Government Is Trying To Kill Me.
Face Fascination Developed
These days, Kerr has developed a kind of fascination for his own face. He likes the changes he sees among the grooves and the lines: the plumpness of his cheeks, the ruddiness of his skin, a renewed vitality in his eyes. “I’m starting to look like a man my age instead of one of these freaks you get turned into by the virus,” he said.
By Darah Hansen, The Vancouver Sun
HIV medication Update – Doctors Visit 5-2-07
Here it is, The list of new medications that I will be taking from this point onwards. My doctor says that this regimen will last for at least 1 year. We may change to other medications as they become available. The first drug (TMC 125-Etravirine) is not yet approved in the U.S. but I have access to it here because of the research arm of the McGill University Health Center AIDS research center and the Jewish General Hospital Aids research clinic.
I have had a ‘slow creep up’ of my viral load which is sitting around 6,000 copies and my CD4 levels are around 700. Down from the 1000 mark 6 months ago. Over all the doctor thinks that these new medications will stop the Lipodystrophy from the D4T for the last 10 years. He thinks these new medications will also work seamlessly into my daily regimen, with some pills being a once a day dose and others a two dose a day treatment.
I am confident with this new regimen and so is my doctor. We had some discussion about my last visit. It seems the intern that saw me was a little off with his diagnosis of my case which caused us both some serious stress. But all is well, otherwise.
I am told that the TMC 125 should be available in the next two weeks and that I will begin the entire regimen at that time. There is no reason to start single medication regimen now and add later. The drugs [in combination] work better than single regimens.
It goes without saying that I will be testing medications that some of you MAY be placed on later when the U.S. approves them for use in the states. So stay tuned and I will report what I learn as we go along this new treatment regimen.
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Brand Name: TMC 125 – Etravirine
Drug Class: Non-nucleoside Reverse Transcriptase Inhibitors
TMC125, also known as etravirine, is a type of medicine called a non-nucleoside reverse transcriptase inhibitor (NNRTI). NNRTIs work by blocking reverse transcriptase, a protein that HIV needs to make more copies of itself.
TMC125 is an investigational medicine that is not yet approved by the FDA for use outside of clinical trials. It is being studied for the treatment of HIV infection. Early studies indicate that TMC125 may be effective in treating HIV that is resistant to other NNRTIs. This medicine does not cure or prevent HIV infection or AIDS and does not reduce the risk of passing the virus to other people.
Brand Name: Viread – Tenofovir
Drug Class: Nucleoside Reverse Transcriptase Inhibitors
Tenofovir disoproxil fumarate (tenofovir DF), also known as Viread, is a type of medicine called a nucleoside reverse transcriptase inhibitor (NRTI). NRTIs block reverse transcriptase, a protein that HIV needs to make more copies of itself.
Viread is an anti-HIV medication. It is in a category of HIV medicines called nucleotide reverse transcriptase inhibitors. Viread prevents HIV from altering the genetic material of healthy T-cells. This prevents the cells from producing new virus and decreases the amount of virus in the body.
Brand Name: Prezista – Darunavir
Drug Class: Protease Inhibitors
Darunavir, also known as Prezista or TMC114, is a type of medicine called a protease inhibitor (PI). PIs work by blocking protease, a protein that HV needs to make more copies of itself.
Prezista is an anti-HIV medication. It is in a category of HIV medicines called protease inhibitors. Prezista prevents cells infected by HIV from producing new virus. This reduces the amount of virus in your body.
The correct dose of Prezista is 600mg twice a day (two 300mg tablets twice daily) At the present time, Prezista is only approved for HIV-positive people who have tried other anti-HIV medications in the past. Clinical trials have demonstrated that Prezista is an effective option for patients who are not likely to respond to older protease inhibitors, especially when it is combined with other anti-HIV medications that a patient’s virus is still at least partially sensitive to.
HIV medications Information Online
