It is a glorious day today. A little cool, a lot of sun. And a great morning to travel for my fall clinic visit.
I arrived early and a very gregarious nurse did my triage and (she chose to use a side room and not an exam room) which led to a conversation that went long, and another nurse came in and interrupted us and said there were other patients waiting…
My visit with the doctor was stunning. It seems this new G.O.M.B.S. diet is working.
(Greens, Onions, Mushrooms, Berries, Seeds) See Joel Furhman
I’ve been on this diet for 5 months now. I’ve lost a few pounds, and there is promise that if I loose more weight, my diabetes medications will be pulled.
My numbers are WAY up.
My cardiac test at Hotel Dieu came back normal.
My blood tests for cardiac numbers was normal. (read: Lower that usual)
My sugar number was 4.5 – BUT my Triglycerides are up at 11. Strange that my sugars are so low and the triglycerides are up so high??? Doc doesn’t have an answer for this and aside from my dietary changes, they should come down.
My T-Cell numbers are as follows:
12 Aug 2013 VL 39 copies cd4% 43 (low) cd4ABS 1591 cd8% 42
16 Apr 2013 VL 39 copies cd4% 45 (mod) cd4ABS 1080 cd8% 42
03 Jan 2013 VL 39 copies cd4% 45 (mod) cd4ABS 1440 cd8% 39
All the numbers were spot on. Doc was happy. He said I had the highest t-cell count in the clinic. Must be the pills…
It was a good start to the day.
Now I am doing laundry … UGH !!
More to come, stay tuned …
It has been a full day in the neighborhood. After dinner last night we both went a little manic and hubby took on the bathroom and I took on the kitchen and we scrubbed them both from top to bottom, because building employees always observe the living space whenever you invite them in.
This morning I was up as hubby left for work, and I finished prepped for the arrival of our repairman. Which meant clearing out the hanging clothes in the closet and vacuuming the floor because it was quite messy. If you stick anything into the closet it usually doesn’t see the light of day again. Aside from the clothes we wear on any given day.
And while he was working on the tap, I was upstairs doing a load of laundry, which means we are up on the game for this week. YAY !!!
It took about two hours to rework the pipes and tubing and to install the new tap, after that I had to reset the closet and re pack the kitchen sink cabinet and clean up where everything was piled up in the living room.
I had some time to myself and then decided on a nap about 2 until I needed to get up and shower and shave to go out this evening. And that usually takes 20 minutes – so I slept until 6.
It was an easy trip out and back. And lately the theme of travel has been six minutes. Whenever we hit a transfer, the time on the train has been six minutes in either direction.
We sat a fair number, but a few faces were missing from the usual crowd. I called my pigeon to see if he would come on the way out, but he didn’t return my call.
We continue our reading of As Bill Sees It and the page “Never Again.”
“Personally, I take the attitude that I intend never to drink again. This is somewhat different from saying ‘I will never drink again.’ The latter attitude sometimes gets people in trouble because it is undertaking on a personal basis to do what we alcoholics never could do. It is too much an act of will and leaves too little room for the idea that God will release us from the drink obsession provided we follow the A.A. program.”
For many at the meeting, never is a word we stay away from, and the concept of never is also avoided. Forecasting too far into the future brings with it its own challenge. Working with 24 hours or staying in ones day is preferable.
I had two attempts at learning how to stay in my day. Both lessons at separate times, had their challenges, one far greater than the other.
Dealing with never drinking again on the first go, had the added pressure that I was “going to die” imminently. I was given my date and all I could do was focus on the date to the point that I drove my sponsor and care givers crazy, marking calendars in my kitchen, marking every day that I was on my way to my death.
I wasn’t drinking, one day at a time. And I was living, one day at a time. I could not see past the day I was in, until I lived into the next day. And days turned into weeks, and if I lived weeks, I managed a month. And if I managed a month, I could see into the next month. Moving from day to day to month to month.
And I finally arrived at my death date, and I was stymied. Because I was still alive. And I didn’t know what to do at that point. It was a good thing I had somewhere to go and something to do on a daily basis. Structure that was a blessing because I could live outside my head for as many hours as I was working at the bar.
But when that came to an end and I had to reenter the world, and my safety net disappeared, I was left to my own head and my own devices. And that didn’t go very well, and I went out.
Living on emotions is not recommended for people in early sobriety, and that includes people from 1 day to at least 5 years of sobriety. Because at 5 years is when you hear the POP and that is your head coming out of your ass.
The geographic INTO the drink and drugs was a mistake. A total REGRET !!!
But the geographic OUT and the distance put between me and the drugs meant that I now NEVER had to do drugs again. And that stuck and I never used again.
Moving from a daily drunk to a binge drunk meant I drank only one night a week, and that was on a Saturday night at the club. When I took my last drink, I met a boy who did not drink on a daily basis. Who took me to my first meeting.
The club I drank at finally closed its doors. I like to think that the last alcoholic left the building so they had to close, because I was no longer there. However I had to walk by that building every day to get to my meetings.
Another geographic HERE and after a few months of sobriety again, I never had to drink again. I came here sober and to date I have never had a drink, the caveat is “One Day At A Time.”
The story goes that I got a little arrogant and decided to live in expectations and they told me to stay in my day and keep coming back. The second time, it took me considerably longer to learn how to do that, eighteen months …
I had one day that I craved a drink. In my first year of sobriety. On Jean Baptiste Day, I was at the Old Port and really wanted a beer, not my usual poison. Because I loathed beer, but I wanted one. Needless to say I got my ass home and bypassed the drink. Thankfully …
I’ve learned in as many years that I cannot live too far into the future. It messes with my head, it creates expectations that I know are pointless. And I get angry and resentful. All those lessons came again, in the last year of sobriety.
One day at a time works. If you work it.
It doesn’t come overnight. You learn and earn along the way.
I live on borrowed time these days, always waiting for the other shoe to drop, and the way around this fear is to meditate every time I visit my medicine cabinet and pour out my pills. It takes a lot of personal energy to positively charge medication to make it work better. I’ve learned how to re-point negative energy into positive energy. That was a great lesson. And the energy is quite potent.
Almost time for dinner.
More to come, stay tuned …
“The verdict of the ages is that faith means courage. All men of faith have courage. They trust their God. We never apologize for God. Instead we let him demonstrate, through us, what He can do. We ask him to remove our fear and direct our attention to what He would have us be. At once, we commence to outgrow fear.”
Page 68 Big Book
Thursday. Location: Montreal. 18c with clear skies
The weather has been very amenable. It was cool enough last night to open the windows for a bit. The month is quickly coming to an end. When I was much younger and quite more stupid, the run up to my birthday usually began one week out. The barhopping and drinking in earnest would begin. And each night all the way up through my birthday would entail much, much more booze.
And we all know how that ended…
July is always a tough month. But it the most important month of the year. It is not only the month of my birth, but the month that I learned that my mortality is on the line.
July 8th comes and goes every year. And I mark it with respect and dignity. People seem perplexed that I would mark an event like this openly. At a meeting not long ago, I shared this piece of info in community and got stares and questions afterwards.
In the beginning I had to learn how to live one day at a time. In fact, I had to learn this lesson more than once. Both instances were based on certain factors in my life.
I would string a few days together. And mark a week. And if I lived a week, I would mark two. And at the end of a month, I would be brave and mark another month. Such is the case when doctors give you your actual “End Date.” And tell you to go home and settle your affairs because death is imminent.
This year I kept to myself mostly. But with Pride every year, come the memorial public television shows like We Were Here and Milk. Many people I assume who have lived through the dark times of the 80’s and 90’s may have book collections that mark the tribulations in print.
Paul Monette is the consummate author of the AIDS years, having lived, loved and died from the disease. I have all his books in my library. And for the most part, I keep them as memorials. To remember how bad it was and to be ever mindful that I may go the same way.
I spent the past week of nights reading “Living on Borrowed Time.” The book details with great pain the months and years that comprised the life and relationship that Paul had with his husband/partner Roger.
It is difficult to read but important for me to pay homage to the men who were there when it all began, who died well before I came along with AIDS. But times were not much different in the early 90’s – there were dedicated drugs, nor doctors to treat us. We were treated like hazmat patients. We would be quarantined in space capsules in rooms away from general population and doctors and nurses would gown up like martian hunters to come near us.
The Christians called it God’s revenge for homosexuality.
Employers fired us. Landlords threw us out on the street. Family and friends and lovers left us because we were sick. Mortuaries would not process nor bury the sick.
But we did. All of it.
Every year I live is a great big Fuck You to the Christian Right. For all those people who left me on the roadside including my family I can only say I lived and I have lived well. I am the man I wanted to be.
Because men of faith took me in and gave me life when you turned your backs on me. And hence the thousands of men who were sick and went to their graves with what little dignity they had in their souls.
I lived … And I am still alive.
Tonight;s reading speaks about God, and no apologies. Courage and fear.
To live with a disease that is going to take your life one day is courage. Not taking a drink one day at a time, is courage. Learning how to live knowing you are going to die with certainty of a disease that is ugly and dirty is harrowing.
AIDS is not pretty. But neither is alcoholism. Both are takers.
But in today’s day and age, both are treatable and manageable.
After 19 year living this way, the fear of dying still exists in the back of my head. But every day I take my pills I earn a day of life. It is my job to take pills every day, if I do nothing during my day, the two actions I make are to take my pills.
I do what I need to do every day, every week and every month to stave off the drink. I don’t know how else to stave off dying. But I don’t fixate on dying, because if I do, I will only hasten the end for which I have been avoiding for more than a decade and almost two.
Our little men’s group is holding its own. We get the by and by visitor to come, but for the most part, it is a conversation between friends in a familiar space.
Do you have courage? How do you live it every day?
More to come, stay tuned…
It has been a day …
Early this morning I was awoken by a phone call from the hospital. The previous conversation that I had with the woman in the ombudsman office, did not stay between us. And it went further.
The medical coroner (read:Examiner) wanted to see me today. And as soon as possible. I arrived at the hospital by 2 pm for a special meeting. I waited for a bit until he arrived. And we sat down and he opened the foray with:
“I don’t think he said what you thought you heard him say !!!”
So much for the customer is always right!!!
He had talked to both my doctors. This is how he opened the conversation.
We talked and as we talked my voiced began to crack, and I began to loose my patience with him, as he lauded my doctors good manner and his humanity and all that shit … By the end I was screaming at him.
I was livid.
He said I must have perceived something incorrectly. I was besides myself. I was like you don’t get it. And I went into great detail what was going on in my mind. i was still wrong after all my talking.
We ended with me going to the clinic and making an appointment to see my doctor tomorrow morning. Because he is going on vacation for four weeks.
During our discussion, he let loose some information that came from his inquiries of me from both my doctors. One of those is that my diabetes is not being controlled very well, and that more medication may be added to the mix.
And that I have fivefold threats to possible heart disease. Little things here and there that might indicate that I am in big trouble. Not to mention my retarded family medical tree. Thank you dad for that …
According to my diabetes doctor, the last time I saw him in clinic, he doubled some of my meds and left it at that. Two weeks later I called the clinic and asked if he wanted to see me since he upped my medication. They opted to give me an appointment six months from that point, which is next fall.
No discussion of medication or levels or anything.
Tomorrow morning I am going to the diabetes clinic to see what he wants to do since I am not “responding to medication” like some would like and instead of waiting six months for new labs and by then things could be much worse, see if indeed he wants to change up my mixture.
Since this medical examiner is all up in my business and said several diagnosy statements, as if he could talk to me like he was MY doctor.
I screamed and yelled very loudly. I am sure the secretary got an earful of my anger and disappointment in the way these proceedings were heading.
I picked up my bag, I said Fine … I will make an appointment for tomorrow and I carried my ass to the clinic.
Meanwhile. I’ve been waiting for two weeks for someone to call me back about my upcoming appointment to cardio for the tests that mu doctor was so sure I needed because in his words last, I was going to DIE !
The sheet was still sitting on the desk. No answers, No appointment, hurry up and wait…
I started freaking out on the secretary and once again I raised my voice. Obviously I was not amused by the lack of response that I was told I would get quickly because of the severity of the call.
Obviously I am not dying enough to get immediate action.
Hence, my impending threat of imminent death was totally overblown.
And perhaps I did not hear what I think he said, and that he didn’t say what I thought he said, because my doctor is so virtuous.
FUCK ME !!!!
I cam home for an hour. I departed close to 4 pm hoping that the church secretary would still be there so I could pay Thursday Night’s rent for June, but I was late. The office was closed.
I went downstairs it was almost 4:30 and I cranked out tables and chairs. Because I needed something to do with my anger, and to spend some time quietly reading in a space that I usually commune with God in.
My sponsor showed up around 5:30 and he sputtered and told me that they had changed up set up and that I set up the wrong way and that it wasn’t my job to set up and on and on …
Fuck me Twice …
We re-arranged the room a bit. I signed on to the group again. So I now have memberships at three groups that meet in that space. After spending so much time with Tuesday girls at the roundup I was reminded how much I missed them and that I needed to go back. And so did a friend, who used to come to Vendome Beginners instead.
The talk was Step Three …
Made a decision to turn our will and our lives over to the care of God as we understood him.
My sponsor could not bring himself to the roundup because of his past. And I am amidst a spiritual experience. And he could not be further from me. And I told this to one of the women tonight that since the roundup I feel like I am one up on my sponsor.
He doesn’t give me what I feel I need. I need more of something I know exists and things need to change. So I am hoping to get with a woman friend of mine in the coming day to talk to her.
Now I am home, my anger is abated.
Tomorrow I see my doc. Let Us Pray.
However I did get the option that if I want a new doctor, I can have one if that’s what I decide. I chose to wait and talk to my doc tomorrow before I make that decision.
More to come. stay tuned…
Let’s visit the doctor shall we?
I got up this morning and decided to call the ombudsman office to see if there was any movement on my file. I left two messages. Both useless. I later found out that this office is useless when it comes to patient issues.
I sort of hoped that my diabetes doctor would be in his office at the clinic today, it being Thursday, I wasn’t sure. But I called anyways and was rewarded with a full conversation about what happened last week.
He was sure that I misunderstood Chris, when he said that I was gonna die. And I assured him that I did not misunderstood the words “You’re gonna die!” Hr then offered that he would speak to Chris about what he said and get back to me. In the meantime he said “NO, you’re not going to die…”
So that was a good start to the day.
The city has been under a boil water order for more than 24 hours now. That is more than a million people, on and off the island fighting over bottled water in the stores, and businesses trying to stay open with a biol water order on.
Do you know how many coffee shoppes closed for the day today because they are on the water main to make coffee and other drinks? Millions …
It was a muggy muggy day. It poured here and there, and I carried an umbrella and it did not even rain on me while I was in transit.
This evening we used two tea pot water boilers and I bought instant coffee, hot chocolate and assorted teas for the meeting.
We sat 11 men. And the DCM for the area came to inspect the group so we can be added to the next meeting list coming out soon. We read from the 3rd edition of the Big Book, a story from the back.
It was all good. Lots of gratitude tonight.
That is all.
More to come stay tuned…
Courtesy: BillyPazionis Flickr
I would first like to thank all of you who responded to my post yesterday. All your advice was well taken. Since yesterday was a holiday I could not make any headway into information until today.
Last night I filed a grievance with the Administration of the hospital where I am being treated. And I also filed a complaint with the ombudsman who emailed me to say that they would be contacting me.
I am going on with my life because obsessing over dying is not fun.
I was up and around to get out early for the meeting and we took the 90 bus to Vendome. It wasn’t raining but the sky was dark.
The topic was Growing up from As Bill Sees It.
And this is what came to mind.
I was diagnosed about a month before I got sober in 1994. I had to fight tooth and nail to survive because there weren’t dedicated doctors to care for the sick and no social system to engage to get care.
I was forced to grow up quickly and without question because it was just me, save for my crack assistance team who cared for me. Everyone else had scattered.
I had to be hyper-vigilant with my health care providers and I held them up to severe scrutiny and high expectations because this was my life we are talking about. You did not lie to me and you sure as shit did not fuck with me in any way.
If you said something or said you were going to do something for me – you did it and if you didn’t I made life hell for you until you made your word. I had to do that because people are human and sometimes they talk shit.
When I moved here, I got into the clinic at the hospital where I have been. The top dog was my doctor and I released my stranglehold on people opting to trust blindly what I was told.
I laxed my grasp and my hyper vigilance.
I trusted a man without question. Now he has eroded that trust with the way he seems to be treating me. You don’t tell someone you are going to die without proof or FACT. End Point …
Now we wait to see what they administration will do with my case. I will be on top of this as the days progress.
Your prayers and advice are always appreciated. Please keep in touch and I will be in touch.
More to come, stay tuned.
It was a gloomy day out as I prepped to leave for the evening. And loathed to carry my umbrella, I wore a hoodie and had my tuque in my bag, just in case.
There have been discussions about my sharing my thoughts on death and the fact that my doctor is adamant that I am to drop dead soon. The consensus is that I should definitely get a second opinion – a new fresh set of eyes to look at my file and give me some constructive truth.
All of my labs are fine. There was no discussion of them directly or in passing. My HIV numbers are all nominal – like they have been for more than a year. Tomorrow I will call the clinic and make my request. And if they can accommodate me then I will take my business elsewhere. I am not going to sit here and ruminate over dying. That is the farthest thing from my heart and mind and I don’t appreciate someone taking that tack with me and give me no further information. based on his appraisal.
It rained …
I made my transit across the square with a stop at Pharmaprix both on the way out and on the way back. The mall is still in remodeling phase. Lots of empty space and walls up all over the main floor.
I noticed last night, that the Seville crane was being taken down. They completed that mission over the weekend. I guess that means no more heavy lifting for phase three any more. There are a few stacks of bricks on the property still waiting to be used. In the main large space underneath phase three is Adonis, a small chain grocery store. That should be a welcome change.
There are lots of plans going on for this end of town. We’ve not heard anything since the proposal to raze the Provigo and build a high rise building in its place, and move Provigo further up the block in the old Omer de Seres space, but there is a condo sign out front of that space, so it may not be taken up by Provigo unless they build up – out of the main building into a high rise condo.
We sat a modest number of folks. Die hard Sunday night attendees. We are at Chapter 8 – to Wives. When the book was published long ago, it was geared to men. Not many women were represented in the room just yet, but this chapter was written to the few who began women’s recovery in the rooms.
We read the first few pages of what the lay of the land was for the woman with an alcoholic in their lives, and just what happens to relationships and businesses and work lives.
And I wonder… What would have happened if this solution based answer to the problem of alcoholism was introduced to my family? Because back then, in the 40’s for my grandparents, the 50’s and 60’s for my parents, women married for better or for worse. They were in it good or bad. My mother’s sister was smart, she did not marry into the problem of alcoholism. She stayed clear of what she was witness to through the eyes of her siblings, family and friends.
I ran roughshod through my family life. Dad was a Jekyl and Hide drinker. And he could flip the switch on his personalities with ease. When it was good it was good, but when it was bad it was worse.
My parent’s were not solution oriented people. Alcoholism existed. Deal with it, but never speak of it or go to find a solution for it. What happens at home stays at home, no one need know about this blight on our family.
Thank God I am sober today. I am grateful for all good things.
A good night was had by all.
More to come, stay tuned…
It has been an interesting past couple of days. And I chose not to write yesterday because I was waiting on a medical call from my doctor after our short but terse visit together.
Obviously, he says one thing, then does another.
Because of what he said at my appointment was of such import and dire warnings that he should have followed up on what he wanted to do next.
Alas, I am still waiting…
By the Numbers …
16 April 2013 VL 39 copies CD4% 45 CD4Abs 1080
02 Jan 2013 VL 39 copies CD4% 45 CD4Abs 1440
07 Aug 2012 VL 39 copies CD4% 44 CD4Abs 1276
My t-cells seem to fluctuate around that thousand mark. But as long as my percentages remain at 45% there is no worry from my doctor. I got copies from my file/chart that has a more explicit history of my treatment.
Two appointments ago, my doctor mentioned that a change is coming for my treatment plan. The new regimen is not online yet here in Canada. So I remain on what I am taking until then. Probably six months to a year out.
Secondly, my doctor has been fixated on my heart. A fixation that has only grown in earnest this appointment yesterday. He tells me one thing, then I go to see his brother for my diabetes issues and George sends me for a cardiogram.
I dropped two copies off to both clinics. Now, it is understood that if a problem arises that they would call me immediately because something needs attention right away.
I’ve been working on that assumption for all these years. So I dropped that lab off and got no response.
Yesterday at my appointment my doctor mentioned in passing that there was some abnormality on the scan. He did not elaborate. He then went on this tirade that I was going to drop dead.
Or have a heart attack soon, as in IMMINENT !!!
He has been about this warning for some time. However he does not elaborate on the warning. Frustrating.
He wanted to order a battery of tests. A stress test and all that goes along with it, and he left it at that. He said nothing encouraging to me yesterday. He was very grim. However good my labs were, he seems fixated on my mortality.
More than usual. Is this about him or me I wonder !!!
Since cardiac issues run in my family, not to mention strokes, I am on God’s good graces, seeing my father has had several heart attacks, and both his parents were knocked down by terrible debilitating strokes. I should be right in line for some catastrophic heart related issue … Let Us Pray !!!
I left that appointment shaking my head. Not knowing what to feel or whether I should really be worrying. The secretary at the clinic was supposed to make arrangements, check with my doc and call me back.
Now, had this been an immense emergency, like needing these tests right away, they would have already contacted me into the cardiac clinic.
They haven’t … No call at all, two days later. Should I worry or not? Do I give in to serious ruminating and worry that my mortality is in jeopardy? I have no clue, so until such time I get a call or further warning, I am going to go on with my life.
An issue has arisen with the Quebec government and my financial aide file. They say I owe them almost $3000.00 in back loans. AIDS and HIV are disability issues and that loan should have been converted to bursaries long ago but weren’t. When I applied for financial aide, I submitted a disability form in late 2003. They are fixated on this date as my diagnosis date. They are wrong.
My diagnosis date was July 8th 1994. Not November 2003.
I have to contact my primary care physician in Miami to get him to send some notes up here to verify that I was treated in their clinic prior to my arriving here in Canada. Ugh !!!
*** *** *** ***
Today is Thursday. I usually don’t sit here and stare at my monitor all day long. so instead I sleep until I need to get up and go. Which is what I did today.
I was up early and out by twenty to six for the meeting. It has been on the cool side the past few nights. And on the way home I was chilled.
We sat a fair number and hit kitty goal again tonight.
Our chair read from the Big Book, and Chapter Five … How it Works.
“If you have decided you want what we have and are willing to go to any length to get it, then you are ready to take certain steps.”
One line. Lots of words. People all over the place on the topic of steps.
There is a note in my Big Book on Step Twelve …
Having HAD a spiritual awakening as THE result of these steps, we tried to carry the message to alcoholics, and to practice these principles in all our affairs.
In my book I have this notation at Step 12 … There is no other result if you work the steps…
We talked long and hard about steps, where we all are at the moment, what he did, how we did it and what happened afterwards.
Suffice to say that at ten years, I had a spiritual awakening. I have worked my steps again since then. I live in my steps today, to the best of my ability.
I am not perfect. I still have issues, with myself and a few others. Not many others. But still. I do what I can every day to help someone else.
It was a good night.
More to come, stay tuned…
It is another bitterly cold day in the neighborhood. We are sitting at (-23c/-36 wc) at this hour. Cold enough to freeze fingers and faces in a matter of minutes. So getting around and waiting for buses was a challenge.
Doc say that I am doing remarkably well on treatment plan. No changes were made to the regimen yet. So here are the numbers:
03 Jan 2013 Viral Load 39 copies Cd4% 45 Cd 4 abs 1440
07 Aug 2012 Viral Load 39 copies Cd4% 44 Cd 4 abs 1276
15 May 2012 Viral Load 39 copies Cd4% 45 Cd4 abs 1350
10 Jan 2012 Viral Load 39 copies Cd4% 43 Cd4 abs 1333
What’s good are the cd4 percentages the higher they are the better the numbers. My Cd 4 abs are high again. Which is good.
The downside to treatment are my sugars. They are all out of whack and my daily tests have been spiking on the high side and the tests they ran last time speaks to this problem, so I need to get them back under control. My fixation with juices must end and I need to curtail my diet some more.
My next appointment isn’t until May, but I see my diabetes doctor the beginning of February.
Time for lunch and a nap.
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.
r. Eric Verdin of the Gladstone Institutes says HIV may serve “as a model system for what we know about aging.” Photo: Sarah Rice, Special To The Chronicle / SF
Published 4:36 p.m., Tuesday, September 25, 2012
San Francisco Chronicle Article Here
For a long, dark time in the 1980s and ’90s, the Shanti Project and other agencies like it provided hospice-like services to the thousands of men suffering, and dying, from AIDS in San Francisco.
And then there was monumental success: new drugs to fight the virus and lift the death sentence of HIV infection. With the virus under control in their bodies, patients were healthy and active. They had decades of living ahead of them.
Many of them left the supportive care of places like Shanti, said Kaushik Roy, executive director of the program.
“Now they’re coming back,” he said.
More than a decade after the first truly successful AIDS drugs became available, a new image of HIV is emerging: People with the virus appear to be aging prematurely. After years of feeling healthy and recharged with the new drugs, they’re suddenly slowing down not from the effects of AIDS, but from old age – a decade or two earlier than their noninfected peers.
“When we have clients passing away now, it’s from cancer or heart disease,” Roy said. “It used to be AIDS.”
Patients are coming down with diseases and conditions most associated with aging even when their HIV is well controlled – even when the antiretroviral drugs used to treat it make the virus essentially undetectable in the blood, and by nearly all accounts a patient’s immune system is strong and stable.
They are having heart attacks and strokes in their 50s or 60s. They’re developing dementia and arthritis a decade earlier than they should be. They’re getting cancers that tend to strike only people in their 70s or 80s.
“In the last 18 months, in my clinic I’ve had four people under age 60 who’ve had either bypass surgery or heart attacks,” said Dr. Brad Hare, medical director of the HIV/AIDS ward at San Francisco General Hospital. “One of them was 37 years old. That’s something that would be more typical in somebody 70 or older.”
It is, Hare and other doctors admit, a good news-bad news scenario.
The drugs discovered to fight HIV have saved millions of lives and given patients decades’ more time. By 2015, the average age of an HIV patient will be 50 in the United States, according to the Centers for Disease Control and Prevention. That figure alone is a sign of how widely successful the work toward treating HIV has been.
But it’s come at a cost that has caught patients and doctors off guard. In the United States, AIDS patients now are more likely to die of cancer, heart disease, liver disease or other effects of premature aging than they are of AIDS itself, according to multiple studies.
Researching a cause
“They call it the graying of the AIDS epidemic,” Hare said. “We do expect people with HIV to live long, healthy lives now. But there’s still a big cost to your health.”
Clinicians like Hare who work closely with HIV-positive patients first started noticing the effects of premature aging five or 10 years ago, and in the past year or two, scientists have begun work in the lab to determine what it is that’s causing the accelerated aging and how it might be stopped.
Some of the causes for early aging may be behavioral and may apply mostly to people who were diagnosed at the height of the epidemic. For example, smoking and heavy drinking often can cause early aging, and many people who were diagnosed in the ’80s or even ’90s kept their bad habits because they didn’t think they had long to live. Now, many years later, they may still be smoking or drinking, and suffering the ill effects of it.
“I’m living with HIV, and I have been for 10 years,” said Justin Jones, program manager of Positive Force, part of the San Francisco AIDS Foundation. “When I was first diagnosed, my primary-care doctor told me I really needed to quit smoking. He also told me he used to encourage people to not quit smoking, because he figured, ‘Hey, you’ve got HIV, if smoking brings you even a modicum of pleasure, do it.’
“There was this huge period where people were making choices based off of, ‘Well, I’m going to die.’ ”
Damage early on
It’s also possible, doctors say, that those who were infected early and managed to survive with HIV before the most successful treatments were available suffered irreversible damage to their immune systems. In San Francisco, public health officials now recommend that people diagnosed with HIV start treatment immediately instead of waiting for signs that the immune system has started to suffer.
Another culprit of early aging could be the drugs used to treat HIV. Antiretroviral drugs include what are known as protease inhibitors, which attack key proteins associated with viral replication. But some of those inhibitors also may attack a natural protease in the body, which could, in the long run, cause premature aging.
But the prevailing theory is that early aging is caused primarily by chronic inflammation, probably brought on by the effects of latent, inactive HIV that remains in the body even during antiretroviral treatment.
It’s been clear to scientists for some time that chronic inflammation is tied to aging, and especially to the decline in the immune system known as cellular senescence, the process by which the body loses cells critical to fighting infections. What’s not clear is whether inflammation is a cause or effect of the deterioration of the immune system.
Scientists have, in HIV patients and in the elderly, identified signs of both senescence and inflammation. And, in turn, they’ve noted a susceptibility to certain “old-age” diseases in both older patients and HIV-positive patients. But how those processes are causing disease isn’t quite understood.
A new look at aging
“We used to think about aging as slowly falling apart, like an old car. But there’s a huge difference between us and a car. We constantly get fixed up by our cells. What happens is you have a defect in repairing that damage as you get old,” Verdin said. “It may be that we can use HIV as a model system for what we know about aging.”
Scientists have long been hunting for models to study aging, but because humans age slowly and at roughly the same pace, a scientist can’t hope to study a group of people for a lifetime, if only because that scientist will probably die before his or her study group does.
But HIV patients who are aging faster than the average person provide some opportunity for research.
“What these patients are going through is not so different from what a lot of old people go through,” said Judith Campisi, a scientist with the Buck Institute for Research on Aging in Novato. “The way a lot of us look at it, there’s some natural aging process that’s being accelerated.
“Of course, it may be we’re wrong, and maybe there’s something specific to AIDS going on with these people,” Campisi added. “But I still think we could learn something about normal aging by studying the incidents of accelerated aging.”
Turning to mice
Along a similar vein, a scientist at the Gladstone Institutes is developing what’s known as a humanized mouse – a rodent whose native immune system has been stripped out and replaced with a human one.
If the model works, scientists hope to use those mice to study the aging effects of HIV infection, among other areas of research. Because mice have so much shorter lives than humans, a mouse with a human immune system could provide a fantastic, birth-to-death example of cellular senescence and inflammation.
And, ultimately, researchers believe the mouse model could help scientists develop treatments to fight the decline of the immune system – both in HIV patients and in the general population.
“As we age the animals, it’ll be interesting to see how quickly their immune system ages too. We can look at whether the effect of the aging is caused by the virus, by the HIV drugs, or by a combination or something else entirely,” said Shomyseh Sanjabi, an assistant investigator at Gladstone. “You can really try to address some of the questions that no one’s been able to address right now in the field.”
Someday, scientists hope to develop drugs that will slow the effects of aging in HIV patients. They are looking at anti-inflammatory drugs, many of which are already on the market, to target the specific types of inflammation associated with HIV infection. Scientists at Gladstone are hopeful that clinical trials of those drugs could begin in one or two years.
Researchers also are looking for ways to refine protease inhibitors so they only attack the virus and not naturally occurring cells. That could mean developing entirely new drugs, or changing dosage requirements so that only the virus is affected.
In the meantime, doctors are treating HIV patients with an eye on aging. Many are screening for age-related cancers like colon cancer a decade earlier than what’s currently recommended, or they’re paying closer attention to blood pressure and cholesterol than they ordinarily would in patients in their 30s.
The advocacy agencies are devoting their resources not so much toward hospice and other end-of-life care, but toward support networks for people living with a chronic illness, or psychological help for those who are still dealing with the effects of having survived a deadly epidemic.
And for many of the patients, aging is just another dip in the roller coaster of living with HIV.
“It’s just being on pins and needles all the time,” said Anna, 42, an Oakland woman who was diagnosed with HIV in 1995 and asked that her last name not be published. “Sometimes you feel something, and you wonder if it’s a side effect from the drugs or if it’s aging or if it’s the disease itself. And you don’t know. You just have to wait and see.
“I do have a few more gray hairs,” she added with a laugh. “But I think that’s just normal aging.”
Erin Allday is a San Francisco Chronicle staff writer. E-mail: firstname.lastname@example.org
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…
I stayed up way too late last night. But you just can’t miss a two hour episode of Deadliest Catch. My favorite program on television. Celebrity Ghost Stories is up there as well.
It was almost 4 am when I got into bed, and I had a 9:45 am wake up call so that grasshopper could take me to the clinic for my appointment. It was a quick and painless visit, however I am told that I must loose 1 kilo a month, for my next visit in September. Which means my fitness and running plan will have to start really soon. I have a lunch appointment with a friend tomorrow morning to discuss my plans.
The doctor is worried about my heart and my knees. He says I need to start out slow and take it easy. Advice noted …
Doc says I am gold on paper. Here are the numbers:
13 Oct 2011 VL 39 copies CD4% 45 CD4’s 1395
10 Jan 2012 VL 39 copies CD4% 43 CD4’s 1333
15 May 2012 VL 39 Copies CD4% 45 CD4’s 1350
It seems I am stuck at 39 copies on the viral load scale, I have been at 39 since July of 2010. My CD4’s have been above the 1300 mark since July of 2008. That is a good amount of time to be on the upswing. So the pills are doing what they are supposed to be doing.
I have hit the 1400 mark on 3 occasions since February of 2010. Those dates were: Feb 17, 2010, Jul 06, 2010, and Oct 4, 2010. So 2010 was my best year, by the numbers.
That’s today’s big event news.
More to come, stay tuned …
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.