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Medication Journal (HIV)

By The Numbers – Sept 18, 2013

world-aids-day

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 …


The Second Opinion …

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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.

UGH !!!

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…


In Need of Counsel …

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I am in need of counsel. I am troubled and afraid. You know that I am HIV+ for almost 20 years now. And I’ve been seeing a specialist here in Montreal at the MUHC, McGill University Health Center. Which is in the process of firing hundreds of employees because of budget cuts. I don’t think this is here or there but it is part of my story.
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My doc (Chris) has been my doc since 2003. And for the past few months he has been dire in his warnings. They say if you get a message once, and you don’t heed that message, that God speaks again, and you should take heed. A few months ago, I went to see my doc for my fall checkup, (I go every 4 months). He told me that I was going to die. And he left it at that. He did not give me counsel or explain. And left me to go home with this news.
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That afternoon I went upstairs to see his brother, (George) who is my diabetes doctor and I told him what Chris has said to me. He rushed me up to cardio to get a cardiogram. Done. I took the results to both clinics and went home. We are of the understanding that if there is a problem, that they would call. No call came.
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That test sat in my file for four months. No word. No call. so I guess no problem ???
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On Wednesday I went for my spring check up and my blood work, and all my labs across the board. All my labs are above board. Not one thing out of place. The norm for me. Once again, my doctor came in looked me dead in the eye and said that I was going to die. He also said that there was an abnormality on the cardio test, which he failed to contact me when the test was done. That was clearly an error on his part.
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No explanation. no words of comfort. Not One Word.
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He said that he would call Cardio and get me booked in and call me on Wednesday afternoon. Because he is sure that it is imminent that I am going to drop dead without notice. But he did not say that to me. But I imply that is what he means. They did not book me. They did not call, Wednesday, Thursday or Friday.
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I’ve been sitting on this secret for almost a week, Because I cannot contact the clinic till tuesday because of the holiday tomorrow. And I haven’t told my husband what my doctor told me because I don’t want to scare him or upset him, until I know what the hell is going on.
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How do you go about firing a doctor? Everybody I am talking to in my meetings say the same thing, that I need a new pair of eyes on my file. and that I need a second opinion because my doc has been on an emotional down for a while, he is moody and obsess about nothing.
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I just can’t see how I have fucked up my life right now to hear that I am going to die and soon? All I have done this past year is tighten up the ship, eat right, take my pills and go on with my life.
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I am stuck in between disbelief and incredulity. If I sink into the truth and accept the end is near, I will go crazy without someone to explain how this is coming to be because my doctor has failed to properly inform me as a patient.
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So I’ve been working on the assumption that he is full of shit and that my numbers are good and nominal and that he is just fucking with me in the worst way. I am not ready to die or accept that he is telling me the truth without further discussion about my mortality or why he is so hung up on  me dying !
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I don’t know what to do …
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So that’s my story right now. I could use some help.
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Thanks
Jeremy

Two-fer Thursday

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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…


Harbinger …

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It is a doctor kind of week. And they say here, unless you are dying, never go to the hospital aside from your appointment day, because you would sit in the E.R. for 2 days before a doctor would see you…

Yes, that happens here.

So a little visitor came to me over the past week or two. It appeared as a little pimply thing on my left lower lip. I picked at it and paid it no mind. I surely was not feeling sick, and didn’t have it in mind to get sick. But the damned thing was persistent. It stayed and the flu came to our home.

Hubby got hid blindsided, and if he gets it, I am surely gonna get it. And it is brutal. I have pain in places on my body that I never feel pain at. A cough that keeps me up at night. But today I finally found a pill to make it stop long enough for me to sleep a few hours, earlier today.

Hubby is nailed in on finishing his readers papers for his final M.A. defense on the 24th of this month. But sickness has prevented him finishing it up. I’ve had to step in to shop, cook, do laundry and go to the pharmacy to stock up on exotic pills and potions to take care of ourselves.

We have been sleeping a lot. We’ve missed late night radio all week having gone to bed before midnight and having turned the radio off when we get to sleep eventually.

God damned it that cold sore … If it appears. You will get sick.

That little harbinger of things to come, I thought I could ward it off with all the pills I take on a daily basis, but having an already compromised immune system makes me far easier a hit for a cold or the flu.

I rested up today, after doing two loads of laundry, a trip to the pharmacy and two trips to the supermarket, had my disco nap, where I actually slept.

I was up on time and prepared for my Thursday night meeting. And it seemed that folks were a little off, so the whole meeting was a flight by the seat of our pants. The chair thought she was chairing next week, instead of this week, so she chaired tonight. She went into the crowd and found a victim (read: Speaker) to speak and appointed readers, thankers and the lot.

Never say no. I read the steps tonight.

It was a good share. Lots of warning of what will happen if we become ungrateful or take our will back or stop going to meetings. Even that little thought that “aw, I can do it myself, I don’t need you !” Maybe I can drink normally now I’ve been sober a while. NOT !!!

The message was well received. And the warnings were heeded.

Very soon, the Thursday night meeting will begin … May 2 2012 … And we won’t be attending St. Matthias any more. We are still looking for a cabinet or some box like thing to hold our stuff. But we have some time still yet.

That’s all for now.

Gonna head to bed soon. Friday night is another meeting. And I said I’d go and support the chair, and to bring along a new friend.

More to come, stay tuned…


By the Numbers Jan 23 2013 …

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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 …


HIV patients aging prematurely

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
Erin Allday
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.”

Age-related diseases

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

“All of this raises the broader question of what is aging,” said Dr. Eric Verdin, associate director of virology and immunology at the Gladstone Institutes and a professor at UCSF.

“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.

Refocusing treatment

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: eallday@sfchronicle.com


By the Numbers …

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…

 


By the Numbers …

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 …


We Were Here …

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.


Rainy Days and Sundays …

Courtesy: Pokec0re

The weekend is almost come and gone. And I slept away most of it. Thursday night sitting in class, I felt a migraine coming on. And it has been ages since I’ve experienced pain that bad. I came home from class and forced down some food for dinner and went to bed. I was rather nauseated and I did not get much sleep at all, because the pain peaked about 3 am on Friday morning and I was sick as a dog.

I got in the shower and doused myself with hot water to try and dull the pain, because hubby was going to pick up meds in the morning. That helped a bit and finally the sun came up and hubby set off for the store and I waited for him to get home so I could med up and try and get some sleep. But with a migraine comes the residual pain that follows huge brain pain.

I slept most of the day Friday but I got up and set off for Friday West End. I had some dinner afterwards and went back to bed. Saturday was mostly a wash out since I didn’t have to be anywhere I slept. It took me about 24 hours to regain some semblance of normality. I know that I can’t go that long without my medication again.

So it is Sunday and they said there was a thunderstorm warning out and it looked like they were on the ball. I walked to the meeting and it was still sunny out. But by the time the meeting started the sky got dark and the rain began to fall outside.

It poured for a while and tonight it is just wet outside. It is a holiday weekend and so that means no school tomorrow. I still need to buy my books for class this week. We have a test next Monday on the material from our book. Hopefully I can get that done this week.

Not much else going on here.

More to come, stay tuned …


Imagine Just for a Moment …

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.


Survey Says ???


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.


That’s all for today. More to come, stay tuned …


Wednesday words …

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 …

 


Brain Zaps …

I’ve been having this experience every now and then. It doesn’t happen very often and always at night before bed. I don’t know, every few days or now and then.

The only way I can explain it is like this. I lay in bed with my pillows and I get this feeling of a surge, like an energy surge in my head (Zaps), it comes like a wave and peaks at some point, and then there is a snap, like the snap of a rubber band. And the wave recedes.

This happens a few times in succession. I don’t know if it is connected to my diabetes or something HIV related. I’ve never told my doctors about it because it only started happening not long ago.

Maybe my sugar is too low and my brain is reacting to that, but in checking my numbers when it happens, the numbers are all nominal.

I don’t know if it is a medication thing, because I dose at night before bed.

Have any of you ever felt something like this?

I’m reading on this forum for people with MS, and it seems that this occurrence is a familiar thing. Hubby tells me that the zaps can come from withdrawl from medication, but I am not coming off any medication.

But the ZAP is the best way to explain whats happening.

From the Blonde Pharmacist …

“Brain zaps” are said to defy description for whomever has not experienced them, but the most common themes are of a sudden “jolt,” likened to an electric shock, apparently occurring or originating within the brain itself, with associated disorientation for a few seconds. The phenomenon is most often reported as a brief, wave-like electrical pulse that quickly travels across the surface of (or through) the brain. Some people experience these “waves” through the rest of their body, but the sensation dissipates quickly. They are sometimes accompanied by brief tinnitus and vertigo like feelings. Immediately following this shock is a light-headedness that may last for up to ten seconds. The sensation has also be described by many as a flashbulb going off inside the head or brain. Moving one’s eyes from side to side quickly while open has also been known to trigger these zaps and sometimes causing them to come in rapid succession. It is thought to be a form of neuro-epileptiform activity.