It has been a long day already.
I had a 7 a.m. appointment at Hotel Dieu Hospital on St. Urbain this morning.
I was in bed by 11:30 last night, and sleep evaded me. So I lay quietly until I turned the radio off sometime during the night. I set my alarm clock for 5:30 a.m. and made it to a 6:15 Bus – The 24 all the way to St. Urbain.
I walked up to the hospital and boy what a nightmare. I walked in circles for twenty minutes until I found the Jean Mance Pavillion. I checked in at 7 a.m. and they got me into the flow. There were about ten folks in the nuclear medicine office waiting for tests.
And I have to say that they did a great job at the way they process patients. I had my 1955 Big Book in hand, so the waiting between stages went by quickly.
They hooked me up with an IV line and pumped me full of nuclear isotopes and then I had to wait a bit for the first set of heart scans in this machine that you lay on a table and the scanner comes over you from one side taking pictures.
Then they sent me back to wait for stage two – the Tread Mill. I didn’t do so well, I only made it 6 min. 30 sec. But by that time they had pumped the incline and I was trying to keep up and I had cotton mouth and I wanted a drink, so at that point I said STOP !
My heart rate did not get to the acceptable point for the test so they sent me back to wait AGAIN ! And they devised another test for me instead. But the cardiologist there said my tread mill test was ok.
They took me into the iv room and pumped me full of nuclear yellow liquid poison in a huge pump and syringe and pumped that into my veins and took my blood pressure while the four minute push was on.
I was getting light headed and a headache from it. At the end they made me wiggle my legs for 3 minutes sitting in a chair and observed my blood pressure again.
At the end they pumped me with the antidote to the nuclear yellow poison. And the side effects disappeared.
They sent me once again to wait and finally took a second round of pictures in the scanner. They unhooked my line and told me I was finished.
I walked out of the hospital and just up the block a 55 bus was arriving, and I took that to Pace des Arts and home on the green line.
I did not get to eat my snack at the hospital. I was tired and hungry so I got some food on the way home. Now I need a nap before the evening meeting at North End English.
It was not as bad as I thought it would be. The hospital was very organized and all the folks in that ward were more than gracious and kind. Which made the experience much better.
More to come, stay tuned …
On any given day we usually nap between the hours of 2 p.m. and 8 p.m. These hours might change if there is something on the schedule. So it went, today, Thursday, we took an afternoon nap.
Today I was a bit preoccupied while I lay on my pillow, the thoughts about my heartbeat and the fact I was breathing through no thought of my own, I started having this inner dialogue in my brain about Who Told Your Heart to Beat…
My heart began beating some 46 odd years ago, in the womb of my mother during gestation, and it continues to beat to this day… Thank God … That’s almost half a century of my beating heart. And I breathe.
And I ponder the greatness that is “Something Greater than Myself” some all knowing and all being power that ordained all things and one one specific moment, that being divined that I should be created. I’ve since pondered the thought of the circumstances of my conception, was it in good faith, was it in haste, or just the horny man who coupled with my mother – probably in the back seat of my father’s 1967 GTO.
Who is this God who ordains all things? Who ordained the universe and everything in it. Down to us, his creations, the children of God. If you could look inside of yourself and see your beating heart, and hear the breath that you take in and push out, would we be more mindful of our lives?
I lay on my bed and I listen to my heartbeat. I concentrate on my breath that is coming and going. I don’t usually peer this close to myself on any given day and I think I take for granted that I am still alive today. But today for some reason I was pointed towards my heart. I take this as Divine Intercession.
That I heard something that pointed my attention on what was going on in my body, is divine. It was like, “hey, do you know who told your heart to beat? and do you know why you breathe?”
I don’t know who spoke those words to my heart, but they were spoken. Because I am sitting here writing about it. Do you take time out during your busy day to stop and ponder your heart beat? You breathe, but do you consciously act? Are you breathing or is your breath functioning automatically?
Do you ever think about breathing or do you just breathe taking it for granted?
I think this post is supposed to get you to stop and notice your beating heart and your breathing body. And to remind you that in and amidst all of the things you do every day, your heartbeat matters.
Because if your heart stops beating or you stop breathing … You Are Dead !!!
Take a moment out of your day to honor the beat of your heart.
Sinai photographed from STS 109 – Shuttle Columbia March 1,2002 …
I’d imagine that if Armageddon was going to take place, this is the place we would imagine the first strike to take place, or the first event. It is 3:10 a.m. on Friday morning. Nothing happened, or should I say, nothing has happened
If you are a listener of Late Night Radio, ala Coast to Coast for any length of time you would know that all the crazies in the world listen to this show night after night. And we have been all through the list of crazies over the last year.
We have the ads for end of days Armageddon style food sales, you know, just for those moments when a disaster takes place and you need those ready to eat meals, They aren’t just for earthquakes and hurricanes Yall !!! If you have a spare couple of hundred dollars that you can plunk down for mass storage food stuffs, and you gotta have a place to put it all, and who has a spare bomb shelter in their property portfolio ???
I hear in UTAH that there are bunkers that have been prepared for today’s calamity to take place. I have also heard that the cleansing of the righteous from the non-righteous will take place today. That God is going to cleanse the earth of the sinful and errant peoples. That only the righteous will be saved from God’s judgment.
There is a town in Southern France that is supposed to be a vortex location and that when the earth meets its end, that the aliens are going to appear there and take away all those who fled to the safety of this mountain perch.
All over the tv tonight have been every kind of end of days programming. People trying to divine what the Mayans were trying to say and what that damned calendar and glyphs really have to say, since they are woefully incomplete, and the end story is all up to conjecture.
We’ve heard over the last year all those good preacher men who have foretold of the coming Apocalypse and twice they were wrong and God did not come screaming out of his heaven to take us all to heaven and send all the sinners to hell.
That would mean all of us LGBTQ folks. Because homosexuality is all so sinful and errant of God’s ways … Oh, I kid …
Did you partake in the hysteria of the end of days? Did you buy into the end of the world? Are you hoarding food, guns, ammunition and all kinds of food stuffs? Because you know, when the end comes later today it is going to be utter anarchy in the streets. People clawing and fighting for food and guns.
And those who are prepared for the end will be hunkered down in their bunkers and nuclear safe type hovels defending themselves from the marauding hordes of people who did not listen to the council of the folks who have spent the better part of the last year telling us all this it is coming and you’d better be prepared.
All this talk of financial ruin coming to the U.S. The wars over seas and the Arab spring running into Arab Winter. You never know if the Anti-Christ is going to rise from the desert sand of the Middle East somewhere like Iran or some other backwater Middle Eastern country. Because like I said above, if Armageddon was going to take place, you’d probably be looking over there for him.
I have read that the sun isn’t going to erupt in some hellish solar flare that is going to knock out the electrical and communications grids all over the world. And at this hour, I haven’t read of any earthquakes, tsunamis or volcanic eruptions taking place anywhere in the world.
And when you wake and come upon this entry – having said your prayers to whatever God you pray to the night before, you will rise and the sunrise will be glorious – just like the day before.
And I am sure on Friday night on Coast to Coast they will be hosting a night of checking in with all those folks who have added to the mass hysteria that today is supposed to unleash on humankind.
Did the ancients get it right? Will we come to rise above ourselves and grow in spiritual awakening? Will we rise to the next level of humanity overnight? And what have we learn in this exercise of preparing ourselves for the end of the world. And what will we say to all those folks who are hiding in their bomb shelters as I write this.
Will we see a nuclear Armageddon from the East? Because if we do, for those of us who could not afford a bomb shelter – we are all goners … So I guess before I go to bed I should say my final prayers – kiss my ass goodbye and hope to wake up tomorrow morning.
Today my husband is traveling to Ottawa to see his family, and it may be his last meeting with them if we are to believe that something BIG will take place tomorrow some time. Who knows.
It’s the end of the world as we know it. And when you wake tomorrow – what kind of world will it be? And what will we say to all those crazies out there sitting in their bomb shelters and on mountain tops and those fleeing the big cities into the interior of the United States and Europe because the oceans are going to swell and swallow up all the coastal land. God forbid you know that volcano on the Canary Islands that is supposed to blow its peak and send a tsunami across the Atlantic and submerge the entire East Coast of the United States.
You are all FUCKED !!!
Shall we make a prediction of what all will happen the day after tomorrow?
Sit tight. I will report more as the day progresses.
More to come, stay tuned …
Cue the music – start the fog machine – blue light GOBO slow pans across the floor through dimly lit space, and the first beat comes…
I am alone, it is early, the bar is not yet open, but I am there alone. Just me, the music and the spirit of God. Well, what little spirit of God there was at that time of my life. It is mid-summer in Ft. Lauderdale. I have just told Todd that I was going to die…
This was one of the hardest days of my life. How do you tell someone you love, that you are going to die? The day I was diagnosed, July 8th, 1994 was the worst day of my life. Bar none …
My then boyfriend packed his things and left in the car as soon as he heard the news. All of my friends found out and they all took off for the hills. The only people still standing by me were Todd, Roy, and a choice few friends at the bar that I was working at.
I called a family meeting and that proved to be a failure. Because I was first gay, now I was HIV+ and that was doubly sinful and abhorrent to them.
If you were around during the height of the AIDS epidemic you would have seen employers fire sick people from their jobs, landlords throwing tenants out on the streets. You would have seen families, lovers and partners toss their sick significant others out into the street as well.
We had nothing left but the little dignity we had left. And the ones who stayed were the ones who would care for, tend to, care for and bury the rest. Because back in the 90’s, there were no comprehensive care systems. We did not have drugs that we have today. We did not have doctors dedicated to taking care of us.
The medical systems had to be built from the ground up. Many doctors didn’t know from AIDS and they had to learn how to care for so many sick people.
I bought several poster boards that I made calendars out of and stuck them on my kitchen wall to mark the days I had left to live. That was 540 days …
My friend Roy used to tear them up whenever he came over because he did not want me focusing on the day that I was supposed to die. I had bigger fish to fry. And Todd kept me on a short leash. What he did saved my life. There will never be another man in my life like Todd.
Hundreds of people I knew died. HUNDREDS !!!!
Every year the quilt was rolled out, we went to see it to mark the new names added to the list of the dead. And we also went to see who was still alive.
This is why we celebrate World AIDS Day, because those who do not learn from the past are destined to repeat it. This generation knows very little of what it was like for us – back in the day.
That is one reason I opened this blog. To catalog and collect my memories. So that in case I die, I was here. I left my mark on the world with the stories of my life that I have collected here for you all to read.
Gay is still a dirty word in the world. And is still met with condemnation and abhorrence. The face of HIV has changed over the last decade. New medications have come along, and many of us who are left from days gone by, are now on those powerful cocktails of drugs that we must take daily to stay alive.
I was there when it all started for me. When there were no real set drugs and I tested every drug that came off the pike from the doctors I sought out after my diagnosis.
In the beginning, we had a drug farm in Fort Lauderdale, and they would collect medication from people who had died. They would repackage those drugs and give them to us, as we could not get medication very easily. And I did that for two years. I moved to Miami because there were doctors there who were trained in care for HIV positive folks.
And from those doctors, I tested every drug that came down the pike. And this has been what I have done here in Montreal, since the day I arrived here. I have the best in medical care here and a doctor who is on the cutting edge of HIV medical treatment.
HIV is not a death sentence, unless you live in a country that cannot get medication. Where death rates are terribly high. We need to do more to get drugs to countries that so badly need them. Drug companies need to do more for the world than what they are doing today. They are NOT doing ENOUGH !!!
Today we remember all those who have died.
We pray for their souls and their families.
And we ask you for your continued prayers and support.
If you don’t know your HIV status, then I suggest you get tested. If you are an active gay man, it is your DUTY to know these things. The owness falls on you to get tested and be RESPONSIBLE for your life and also for the lives of men you have sex with.
HIV knows no barrier, creed, color or sexual orientation. Straight people get HIV too.
Nobody is immune from getting HIV if you are not careful or diligent about sex. Doing nothing is stupid. There is no excuse for why you wouldn’t or shouldn’t get tested, it could SAVE YOUR LIFE !!!
Rapid treatment after diagnosis today can be very helpful to living a full and happy life. It didn’t use to be like this. In the 90’s HIV was a death sentence. Thank God I had what I had or I surely would not be here today writing to you.
Be Responsible. Be Diligent and Be Smart. Get tested !!!
Take care of yourself and each other.
Today was my Fall visit to the doctor to go over my chart. I was prepared to hear the same old line from him as usual. He says “You won’t ever die from AIDS.” But I’ve heard that before, many years ago from one of my other doctors.
I need to loose some more weight. I told him my attempt at running was a failure because of pain in my legs (read: Fire) … He suggested that I take up swimming instead. He said that I would loose weight and tone my pear shaped body back into some semblance of normal.
He also said that in the coming months that he would work to find me alternate medication to take, because, he said, that he thinks I am taking too many pills on a daily basis and soon the option of once a day dosing may come up. But because my resistance profile is high, so daily dose drugs being used now on other patients, are not feasible for me.
He also told me that there is an inject-able drug for Diabetes that will bring my sugar levels down further than they are now and also contribute to loosing more weight. Do you see the theme here … weight, weight, weight …
Since his my doctors brother is my diabetes doctor, they will talk about my file together and set up a new plan of action. My sugars were nominal last month. My A1C was 6.3. Which is good.
I lost a kilo and a half and that pleased my doctor. He worries that as I grow older my chance at heart disease rises because it is a family problem, as diabetes in. Strokes were the problem for my paternal grandparents. And my father had multiple heart attacks, and has diabetes. Doc wants to take me off that shit list of problems later on down the road. So he wants me to loose more weight.
These are the numbers:
07 Aug 2012 VL 39 copies (undetectable) CD4% 44 CD4Abs 1276 ratio 1.07
15 May 2012 VL 39 copies (undetectable) CD4% 45 CD4Abs 1350 ratio 1.07
10 Jan 2012 VL 39 copies (undetectable) CD4% 43 CD4Abs 1333 ratio 1.05
All the numbers are good. Doc says he doesn’t worry about numbers any longer for me, because I am the “Poster child” for immune-difficency recovery. So he says. he is more worried about my body rather than the numbers it produces.
So that’s today’s update.
More to come, stay tuned…
This is one reason D.O.M.A needs to be repealed and ended.
A Feature Length Documentary by David Weissman
“Of all the cinematic explorations of the AIDS crisis, not one is more heartbreaking and inspiring than WE WERE HERE… The humility, wisdom and cumulative sorrow expressed lend the film a glow of spirituality and infuse it with grace… ONE OF THE TOP TEN FILMS OF THE YEAR.” Stephen Holden, New York Times
*** *** *** ***
Earlier tonight as I was writing “We are not meant to be alone” hubby had put on this documentary that was airing here in Canada tonight. And so I sat through this film reliving the past 20 years of my life in stark detail.
Listening to the story tellers just breaks my heart, because I was there through the worst time of our lives. You just cannot imagine what it was like. Thinking about it is one thing, listening to someone narrate that time period is heart wrenching.
You know, the further I get from the past, the less I tend to think about it today. But every once in a while, and this rings especially true during Pride Months these documentaries play as reminders to those we lost.
I want so badly to tell you that YES, we are not meant to be alone and that we are all loveable no matter what devastation or situation we find ourselves in. And I think somewhere deep down, hubby’s message in watching this film was to say, yes I remember for you and you are not alone here in this life.
Things in my neck of the woods were as frightful as they were in San Francisco and in many big cities in the very beginning. When AIDS came to Ft. Lauderdale, we were all taken aback by the horror of just what AIDS was doing to our community.
Thank God – T H A N K G O D that what I saw did not happen to me. Because it was ugly. I have documented all these things in PAGES, but for the moment I am drawn to address this topic here and now because it weighs heavily on my heart and soul.
When I sero-converted I was so sick. I thought for sure that I was going to die at any moment. But my friends and keepers in the AIDS care circle had other plans for me.
The film speaks of finding a cure …
that there should be more than AZT…
Back in those days we were all taking AZT because there was nothing else to take. We even went the lengths to collect old drugs from people who had died, and those drugs were taken to drug farms and re-purposed for use for those who were still alive and fighting to stay alive.
God forbid you had to go to a hospital. They would break out the hazmat suits and moon goggles and scrubs. It was heartless the way that the medical community treated us, for a long time, until they got trained to be able to deal with us without all the fear that was running rampant through the cities.
There were no specialists, no real doctors at that point, it was hit and miss because there really was no social medical safety net to take care of all the sick. But there were enough people to begin with that took on the task of treating what they could with whatever they had on hand.
I know for myself. I took tons of pills to try and find something that worked. And in the beginning that was AZT. It made me sick, and we had little pocket timers that would go off every four hours to remind us to take our pills.
Eventually in Miami there was dedicated doctors who were in the loop of medical research that I got involved with and what these doctors did for me is nothing short of a miracle.
With Genotype and Phenotype testing, they figured out the strain and type of virus we were carrying, then from that they proceeded to attaining tables of drugs that we could take that had promising results in the lab. And as drug companies pushed out pills we took them.
We did not wait for test circles to form on others, we tested all those meds ourselves. So that every year we survived, we had data to share with the rest of the world as AIDS was a worldwide epidemic.
But medication was expensive especially if you could not afford your pills. There were no insurance plans designed for this – people were selling their life insurance policies and going on government disability to be able to afford treatment. I know it took me three attempts to finally get disability coverage in the U.S. I had to almost kill myself to get my social services person to sign off on my form.
Let me tell you what the government made us go through to get disability insurance. We had to be on deaths door step, sick unto death before they would finally clear you. I got so sick that on the day I finally got signed I walked into the office, not having bathed or shaven in a weeks time, hacking and coughing all over the place for someone to fear me enough to sign on the dotted line so that I could get assistance. It was heartless and cruel the things the government and the state did to those who were sick.
They made us little white boys go to places that white people don’t go to in broad daylight. Trekking from one side of the city to another taking bus after bus and train after train just to get social assistance. Needless to say that once a cast iron bitch always a cast iron bitch.
People were so afraid of the sick. God forbid you sat next to us on a bus, or a train. God forbid you had to deal with us directly.
- I watched families throw their sons out into the streets.
- I watched lovers toss their loved ones out into the streets as well.
- I witnessed land lords toss sick people from their homes.
- I witnessed employers fire and cut people off from insurance and livelihoods.
- I witnessed so called Christians get on their hellfire and brimstone horses and watched them burn us all down to the ground with hatred and fear mongering.
- My Own family turned against me when I got sick. They would rather condemn me rather than help me so fuck them …
It was Sick. Absolutely and Totally Sick !!!
And still today that hatred simmers in certain circles. And every year we go through these periods of time when we are raw with emotions that some fuck comes along and throws salt in the wound just because they feel righteous !!!
The One Good thing that did happen was it galvanized those who were left into care circles and care givers. AIDS separated the men from the boys and the girls from the women. You learned just how devoted your friends were to you and just how much they meant to you while they were still here.
And FUCK all you haters out there. Heartless Bastards…
So many of my friends died. All I have is a photo album of the last time I saw the Names Project Quilt show in Ft. Lauderdale or Miami I think it was. This blog is a testament and my memory for those years of my life when I thought that I too was going to die.
God in his infinite wisdom had other plans for me. There was a life to live. There were things I still needed to do, and people to meet and places to see. Today I have the best doctor in the world. He treated patient Zero, the French Flight Attendant back in the old days. I truly lucked out when I moved here to find him and get into his clinic.
It is sad that there is still no cure. But death is something of a second thought now. We are living longer. I had a doctor who told me that when I die that it won’t be AIDS that kills me. And that was a long time ago.
I’ve always said that if science ever gets to the point that time travel is possible, the time I would go back to is the period of time that I was first diagnosed, because it was the Best of Times and it was The Worst of Times. I knew then that I was loved and so cared for that I wanted for nothing. And I think that that is what saved me.
There wasn’t time to sit and wait to die. I was too busy being taught how to survive and in that time I did not sit in my shit and play with it. Time was of the essence and men nor horses were going to keep me from winning this fight.
Every day that I look in the mirror I thank God for Todd and Roy and all the others who took the time to teach me and to love me and to make sure that nothing took me down be that sickness or man.
Never Forget and Remember still that on your daily goings on, you never know who you are sitting next to on the bus or on the train, or walking down the sidewalk, you never know what battle someone else is engaged in.
It Gets Better. We are still alive. And our stories should never be forgotten.
We Were Here … I was there, and I am still here.
If scientists can take T-cells from someone who is sick, be it from Cancer, AIDS or any other such disease and are able to genetically modify T-cells to turn them into super fighting cells that when reintroduced into the body find, attach, attack and eradicate tumors, infected cells, etc …The possibilities are endless.
If doctors can harvest T-cells from patients and make this work, we could see the really first scientific progress in medical history. A very long time ago I was sitting in a news conference and was told in no uncertain terms that medical science would never get its cure for AIDS before the sciences learned how to fight and eradicate Cancer first. It would have seemed then that people with AIDS were placed on the back burner so to speak.
I was looking at a medication poster at the clinic in my exam room and on that tablet it listed all the AIDS drugs that have been produced in the last 15 years. And I noticed as well that I think I have at least at one time or another taken every drug that came down the pike even before they started publishing these information posters.
Medical reports such as these give us hope that genetic modified solutions could be brought to bear to fight disease is promising. T-cells, I wonder if you could manipulate them like Stem Cells? I have to ask my doc the next time I see him. Which won’t be until December.
Imagine, just for a moment we are on the precipice of medical history…
Could it be???
We need to get the drug companies to fund more studies. Because this report that I posted earlier tonight aired on Canadian News this evening and the scientists who made this discovery got their funds from a charity, not the drug companies who wouldn’t fund this kind of research.
I hope that once these studies are published in their respective journals, that the medical and drug companies will take notice and get on board. It is time to get the pharmaceutical companies to start funding new studies and stop monopolizing the data and availability of drugs and medical studies.
By Stephanie Nano, The Associated Press | The Canadian Press
NEW YORK, N.Y. – Scientists are reporting the first clear success with a new approach for treating leukemia — turning the patients’ own blood cells into assassins that hunt and destroy their cancer cells.
They’ve only done it in three patients so far, but the results were striking: Two appear cancer-free up to a year after treatment, and the third patient is improved but still has some cancer. Scientists are already preparing to try the same gene therapy technique for other kinds of cancer.
“It worked great. We were surprised it worked as well as it did,” said Dr. Carl June, a gene therapy expert at the University of Pennsylvania. “We’re just a year out now. We need to find out how long these remissions last.”
He led the study, published Wednesday by two journals, New England Journal of Medicine and Science Translational Medicine.
It involved three men with very advanced cases of chronic lymphocytic leukemia, or CLL. The only hope for a cure now is bone marrow or stem cell transplants, which don’t always work and carry a high risk of death.
Scientists have been working for years to find ways to boost the immune system’s ability to fight cancer. Earlier attempts at genetically modifying bloodstream soldiers called T-cells have had limited success; the modified cells didn’t reproduce well and quickly disappeared.
June and his colleagues made changes to the technique, using a novel carrier to deliver the new genes into the T-cells and a signalling mechanism telling the cells to kill and multiply.
That resulted in armies of “serial killer” cells that targeted cancer cells, destroyed them, and went on to kill new cancer as it emerged. It was known that T-cells attack viruses that way, but this is the first time it’s been done against cancer, June said.
For the experiment, blood was taken from each patient and T-cells removed. After they were altered in a lab, millions of the cells were returned to the patient in three infusions.
The researchers described the experience of one 64-year-old patient in detail. There was no change for two weeks, but then he became ill with chills, nausea and fever. He and the other two patients were hit with a condition that occurs when a large number of cancer cells die at the same time — a sign that the gene therapy is working.
“It was like the worse flu of their life,” June said. “But after that, it’s over. They’re well.”
The main complication seems to be that this technique also destroys some other infection-fighting blood cells; so far the patients have been getting monthly treatments for that.
Penn researchers want to test the gene therapy technique in leukemia-related cancers, as well as pancreatic and ovarian cancer, he said. Other institutions are looking at prostate and brain cancer.
Dr. Walter J. Urba of the Providence Cancer Center in Portland, Oregon, called the findings “pretty remarkable” but added a note of caution because of the size of the study.
“It’s still just three patients. Three’s better than one, but it’s not 100,” said Urba, one of the authors of an editorial on the research that appears in the New England Journal.
What happens long-term is key, he said: “What’s it like a year from now, two years from now, for these patients.”
But Dr. Kanti Rai, a blood cancer expert at New York’s Long Island Jewish Medical Center, could hardly contain his enthusiasm, saying he usually is more reserved in his comments on such reports.
“It’s an amazing, amazing kind of achievement,” said Rai, who had no role in the research.
None of the three patients wanted to be identified, but one wrote about his illness, and his statement was provided by the university. The man, himself a scientist, called himself “very lucky,” although he wrote that he didn’t feel that way when he was first diagnosed 15 years ago at age 50.
He was successfully treated over the years with chemotherapy until standard drugs no longer worked.
Now, almost a year since he entered the study, “I’m healthy and still in remission. I know this may not be a permanent condition, but I decided to declare victory and assume that I had won.”
New England Journal: http://www.nejm.org
Science journal: http://stm.sciencemag.org
Well today was my day to see the doctor at the clinic. I was early and they took me right away which was good. On the downside they threw a newbie med student at me to do my triage and checkup and medical history. I really hate these medical interns who pick me apart like a dissection project. She took forever to write my refills and had to call the pharmacy twice to make sure that my file was the same as it was at the pharmacy. **note** my meds haven’t changed in years. All she had to do was look in the file-book and see what was there.
UGH !!! Med students…a little Meredith and a lota Christine …
Here are the numbers:
04 October 2010 -viral load 39 copies (undetectable) cd4% 42 cd4 ABS 1470
01 March 2011 – viral load not reported cd4% 44 cd4 ABS 1232
19 July 2011 – viral load 39 copies (undetectable) cd4% 44 cd4 ABS 1364
There is a new test to check the age of the virus which tells doctors how old the virus is in the system as one ages over time. The number is called CD28 (94). Which my doctor says is a very good number.
There is research in the pike to eradicate the virus from the body, to finally try to attack latent virus that scientists say lie dormant in a body for long periods of time and these cells lie inactive until at some point they are activated and become active hiv virus cells.
In the next year if researchers are successful, there might be a new type of medication coming to test clinics that will aid in this new treatment protocol. Since we are a research hospital at the Montreal General, any tests will be open to the patients at the clinic.We talked about the Berlin patient who was cured of HIV by way of a transfusion. Research is being made on that front to treat other patients with HIV. My doctor is on top of all the latest research.
My diabetes numbers were good. My HbA1c number is 5.5
Doc says I need to loose more weight to better my diabetes stats in the long run so as to avoid going on insulin dependency.
There was a question about my B12 levels and other hormones because I am in my mid forties now, they need to check at the next lab drop in the fall. When I lived in Miami regular B12 injections and Vitamin C infusions were run of the mill procedures that we would get every week. I don’t know why they don’t do that here. It seemed that Hiv management there was a bit more comprehensive.
Doctors here don’t follow old methods, in opt for total drug treatment and not much side study practices. We don’t get the “extras” we used to get in the states.
It is brisk out today and a little windy for my liking, but oh well, what can you do right? Today brought a trip to the clinic to get my latest numbers.
I am reading “Afterlife” by Paul Monette, yes I decided to continue my foray into the past and reminisce a bit longer. Drugs were hard to come by and the T-cell count was akin to a college board test. They say if your T-cells drop below 200 then you should worry. I find it difficult reading these books seeing men fighting for life with T-cells in the 200-300 range, getting sick and eventually dying. It is all very frightening.
So here are the numbers for those of you following at home.
30 Jun 09 CD4 1638 Cd4 % 42
29 Sep 09 CD4 1312 Cd4% 41
17 Feb 10 Cd4 1462 Cd4% 43
06 Jul 10 Cd4 1419 Cd4% 43
04 Oct 10 Cd4 1470 Cd4% 42
1 Mar 11 Cd4 1232 CD4% 44
My Cd4% is the highest it has ever been as far back as November of 1993. My Cd4 levels vary from test to test. But still in the thousands. The fluke in the table is the 1638 one off test in June of 09. That’s the highest number on the table in my medical history, looking at the page as I am typing this.
What am I taking these days:
Isentress – 400 mg. Twice a day (1 pill)
Prezista – 600 mg. Twice a day (1 pill)
Intelence – 200 mg. Twice a day (2 pills)
Norvir – 100 mg. Twice a day (1 pill)
They seem to be working…
All the other numbers are nominal. My lipid panel is good, and all my other function tests came back normal. The lab didn’t process my testosterone panel this time, so we will get that number on the next draw come July. That is the new topic of conversation in the HIV circle I run in. ED, testosterone and the like.
As always my doc says that I need to loose some weight. Hopefully with the weather getting better I can get outside more often.
So that’s that.
More to come, stay tuned …
Things are not looking up. People are starting to worry about their lives, their lively hoods, their safety. Fear is beginning to permeate life.
It is hard to watch the news right now. I’ve been following the disaster unfolding in Japan. What the people in Japan are going through, I would not wish on anyone.
On late night radio, we are starting to hear the first tones of concern and fear. A number of people – many people – are wondering what comes next. The name Lindsey Williams in being beckoned once again. People want to hear what he has to say now, and what to expect.
This is what people are beginning to fear. Fallout reaching the shores of the U.S. and further abroad. I listened last night to men talking about what’s coming and it is becoming clear that fear is in the air.
I think the not knowing and the “they don’t need to know the severity of things” discussion has begun. Will we get the truth from the governments involved in this disaster? Many questions and concerns are being raised.
The crazies are out saying all kinds of things. The word “Armageddon” has been raised by some. And from last nights discussion, it is not what if, but when. People are reading the signs, and the question is, who do you believe? What do you believe? And what are you going to do to insure the safety of your family and friends?
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The weather is getting warmer. Hopefully the great thaw has begun. Maybe if we are lucky, the last vestiges of Winter are passing away. The snows are melting and soon, we will see grass in open spaces.
The sun shone today and it was a good day all around. I am on reading week so I have the week off. But my two profs have left us enough work to keep us busy all week in preparation for mid terms next week, and I have another oral presentation to present in two weeks time.
I got set up done early tonight and spent the better part of an hour working on my mid term at the hall. The prof gave us a page of questions, terms and theories to look up in the text and from the slides from class. I got a good portion of the questions done today.
We had good numbers at both meetings. We talked about change. That’s about the only constant in life, change…
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Things are changing, things beyond our control. People in Japan are facing what seem like insurmountable odds to find the dead and missing, to clean up the mess and try, once again, to rebuild their lives from such utter devastation.
The world weeps with them. And the world is paying attention to every update that passes over the airwaves. We hope for the best, and we hope that there is transparent information exchange.
People are afraid, there are no two ways about it. People are seeking answers to questions that, in my estimation, cannot be answered simply. Some believe that the signs are written on the wall. I don’t subscribe to this line of thinking.
We must have hope. The world is not coming to an end. Some say the rapture is coming soon, May 21st to be exact. But the bible tells us that we won’t know what the appointed day is, and when it is coming. But there are those who are set in a belief that Jesus is gonna come, and soon.
We shall see who is right.
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It is going to come down to a choice, wait for it …
Who has the real truth? Who are the true believers? Are the end of days on their way? And if there is a God, do you believe he is warning us of dire things to come? The fundies have their panties in a wad and something is gonna have to give sooner or later.
Pay attention to the signs and omens. Change is afoot. It may not come like we want it, or how we need it. But I believe that if we are steadfast and hopeful we will prevail. I am in the life and living crowd.
All we have is today. We are powerless over tomorrow.
We pray for those souls who have died, we pray for those who are left. We pray for the world in this time of calamity. And we hope that things get better, and not worse. We don’t need another disaster.
We need a miracle. A few of them at that.
I’m not giving up just yet to sit here and wait for Jesus to come get me. I’ve lived this long, and I am sure as hell not ready to die either. And I know that many of you out there don’t want to die either.
So we will see what Jesus has up his sleeve in the coming weeks.
I was up with the little birdies this morning to make my appointment at the clinic. As I was getting ready to leave it started snowing. When I got out of the building, it was REALLY snowing … By the time I got to St. Matthieu it was like a BLIZZARD with blowing snow and it was coming down in buckets. And at one point I heard thunder over head … Thunder Snow …
Now you think that if this continues for a long time, there is going to be a lot of snow on the ground. By the time I got to the bus, I was covered in snow it was falling like pea sized pellets.
The bus was packed. We got up the hill, I don’t know how that bus got up the hill but it did. It was still snowing when I entered the building. Thankfully all the elevators were working today.
The clinic was packed, all the chairs were taken, I was looking through the windows while I was waiting to see the doc. They say if you don’t like the weather in Montreal, wait 30 minutes and it will change.
The skies opened up and the clouds blew away and the sun was shining. The snow had come and gone.
I got in and out in less than an hour. Doc says I am doing well, he upped my glyburide and sent me off with an appointment in six months.
I didn’t get to see my favorite nurse today. I did not see her in the office while I was there.
The downhill bus was approaching the stop when I rounded the stairs out of the building, and I made it, just barely. I stopped by pharmaprix to fill my scripts and came home.
Now it is nap time, since I have a few hours until class tonight.
What’s one piece of technology you can’t live without?
The one piece of technology that I can’t live without would most definitely be my computer. It is my point of contact with the rest of the world. Everything I do, is done on my computer from news and email, to schoolwork and Facebook.
The computer is on from the moment we wake up in the morning until late at night before we go to bed.
The other item that is important nowadays is my cell phone. However I don’t use mine as much as hubby uses his, everything is synced on hubby’s phone. He does everything on that item.
You’d think with a cell phone I would be all up in twitter, but I am not. Neither is hubby.
The computer is our one stop shop for everything electronic. We watch news, and our news shows, television and movies, and music and the like. All of my electronic shopping is done on the computer, all the banking, and Ebay.
I spend an inordinate amount of time every day reading my blog list, watching You Tube videos and I play on my Facebook. I mean really, we live for this technology because it connects us to other people around the world.
If I think about what it was like in the 80’s growing up, how simple things were. I had a stereo and a record player, a car and friends. Who’da thunk it that we would be immersed in this world of technology just 30 years hence.
And the kids of today have everything at their fingertips. With cell phones, and twitter to Tumblr and I pods and I phones. I watch the young people at school and all they do walking here and there and in class is play on their phones. It is like a third appendage.
That’s all I have for this topic.
More to come, stay tuned …
Do you believe everything happens for a reason? Why or why not?
Do I believe that everything happens for a reason?
Who created the universe? And where did we come from? They say that we have been created from stardust. That all the things that make up the body came from the universe. And everything evolves, as it does.
Do we make things happen? Or are things just moving forwards as the universe decrees in its wisest vision.
For every action there is an opposite and equal reaction.
Every body remains in a state of rest or uniform motion unless it is acted upon by an external unbalanced force.
Can we control the outcome of any/every situation? Or are we powerless over people, places and things?
I like to think that I am familiar with fate, and that I believe in fate. Whatever happens happens. Whether it be good or bad. I can take action and try to control every outcome, or I can let go and allow whatever to happen.
Life moves forwards, we grow up, we grow older and our lives change. There are aspects of life that we cannot control. Not yet at lease. Things are in motion all the time. And everything may happen for a reason?
I am powerless over people, places and things. Therefore I cede control to the universe or the power greater than myself.
People are going to do what they do. In any case. Certain things have been set in motion and the outcomes are unknown at this time. But whatever happens, the outcome of certain events are dictated by the primary action that took place at an earlier time.
I think that’s how it works. I believe in fate. I believe in destiny. Everything happens for a reason, not sure. If we act, the universe responds. It may not be what we wanted, but it may be what we needed.
If someone says something, and someone takes action because someone said something or did something to spur that action forwards, they are responsible for their actions. And so is the one who posed the idea.
Isn’t that what people are talking about today. A picture went up online. An idea spoken by a political person. That photograph was seen by millions of people, now we wonder if that action/photograph online was responsible for heinous crimes against humanity in the last week. Or is the person who acted heinously personally responsible for his actions? I think the politician is responsible for her actions and what she says to the general public. Just like the man who took action – he is responsible for what he did …
(If everything happens for a reason, to what do we attribute these goings on?) Fate, or everything happens for a reason?
Can we attribute every action and outcome to the idea that everything happens for a reason?
Do natural disasters fall under the category that everything happens for a reason? Or does this idea only apply to human interaction? Does everything that happens on the human level happen for a reason, and natural disasters occur on a different level?
If everything happens for a reason, then there is no responsibility for the outcome. How do you explain the killing of innocents – if everything happens for a reason? Can you justify things like this happening to “everything happens for a reason?”
We are responsible for our words, our actions and responses to whatever is going on around us.
I am responsible… Whatever I give to the universe, the universe is going to respond one way or another. If I act, something happens. If I say something lets say “here” I am responsible for those words.
But if you act, you are responsible for your actions.
I believe in responsible actions. If I am of sober mind, and I say something I am responsible for what I say. Just like you are responsible for what you say and for what you do. If you choose to act in an irresponsible way, then your circumstances will happen in return, just the same.
What comes around goes around … The universe is listening …
Everything happens for a reason … Not So Sure …