Tapestry, coping and shame

Last Sunday afternoon, Thanksgiving weekend, I was out for a walk in Perth taking some of the photographs I collected over my five days there.  I was also slipping away from the family in order to listen to a radio program which included brief comments I had made by phone as invited by the producers.

CBC Radio’s Tapestry was airing the second part of a series called Coping and at about 15:49 into the program I am heard introducing myself, then speaking of how my bipolar II diagnosis was an “A ha!” moment for me in the context of living as a survivor of childhood trauma, addiction recovery, and living with HIV/AIDS since 1989.

I also said that the bipolar II diagnosis has allowed me “to have a little more compassion for myself” and, in turn, with others with mental health issues with whom I can more easily and comfortably empathize and suppress my self-criticism.

“I live on,” I said, “and live on in curiosity”.

The reason I felt I had to head off to my favourite café, rather than invite my family to listen to the program with me, is that they are not all up-to-speed on my bipolar II diagnosis nor, in some cases, the sexual abuse.  In the case of my mother, I have withheld these because I have judged that she has had more than enough to deal with.  Whether it is worth the secrecy may be another matter entirely.

Fast forward to my weekly group therapy yesterday, which I had missed due to travel last week and being ill the week before.  It followed on the heels of my check-in with my psychiatrist in the same hospital during which I confessed that, due to financial problems over the past little while, I had been unable to pay my quarterly prescription co-pay of about $100 and had, therefore tapered myself off my medications – re-starting at the end of September after more than a month when my finances were back in limited order.

He urged me to be in touch with him should I ever run into trouble again (I had even bluffed my way through an appointment with him during the crisis) and to keep in mind that relapses could be very serious.

Off to group therapy I went where I broke down crying as I reviewed the past couple of months and spoke of the shame I felt in being short of money.  It was of my own doing, I judge, because I had sought sexual release time and time again with the click of my TV remote at $9.99 plus tax per viewing.  (More shame.)  The financing – no worries until the bill arrives – was as seductive as any of the pay-per-view characters.  There were equal amounts of shame in having dug myself into a financial hole, putting my health at serious risk, and the mental condition which I dared not speak of with my loved ones – despite all of their support for me in every other area of my life which many other families might not be able to tolerate.

I did manage to tell my family, as we packed down a splendid turkey dinner, that I had lost ten pounds in the past little while.  What went left unsaid was how much less I had been eating and why.

What could I have done differently?

Certainly I could have flagged the financial problem with not only my psychiatrist but also my doctor and pharmacist.  Heaven and earth might have been moved to make sure I had my meds.  Instead I chose, in shame, to deal with it myself – the same faulty self-reliance that got me through the rough years as a kid.

I could have told friends what was going on.  It would not have been too tough to borrow a hundred bucks for my meds.

No doubt I could spend time, honestly, openly and,  more constructively, out of isolation with friends.

Ending the week on a positive note

I checked in with my doctor today to get results from my latest blood tests and the news was all good!

CD-4: 310 (about the same as January)
viral load: undetectable
Hemoglobin A1c: .063 (down from .077)
Weight: 144 lbs.

So I’m good again until June, by which time I’ll have had some more routine, albeit neglected, age-related tests done.

Medical update: I could do better if ‘good enough’ wasn’t still good enough

It’s been quite some time since I had the run of tests for HIV and diabetes, in part because of my fear of the results, so today’s news was quite satisfactory with clear room for improvement.

My viral load, a test which measures the activity of HIV in my blood, is below levels of present-day detectability. That’s the goal of this test of primary importance.

The CD-4/T-4 count, a measure of the immune response to infections, is 350. It has been higher, and also much lower (10 back in the early 90s), so I’m hoping that I can see it go up again. (I think my personal best is in the 600s.)

On the diabetes front, my A1c hemoglobin test – ideally at 7% (0.070) came back at 0.077. I know there’s room for improvement and, frankly, was surprised I did that well.

All in all, while I had some apprehensions about getting the results today, I was pleasantly surprised. Oh and my “head meds” are at acceptable levels.

Medical update: great news!

When I last checked in about my health I had received some upsetting, though not surprising, results after being off my HIV meds for a few months.

Six weeks or so later, the results are in after being back on everything and my immune system has bounced back a fair bit in a relatively short time.

My CD-4 count, which had been 230 (7%), is now 310 (16%). This is an overall indicator of my immune system and I’d like it to go up some more but my doctor and I are pleased with this interim result.

The viral load, a measurement of the density of HIV in the blood, is down to just 154 from 73,000 in September! I’m well on the way to the ultimate goal of being less than 50 (which used to be called, misleadingly, “undetectable”).

On the diabetes front my random blood sugar (a1c) came in at 7.9%, still above the target of 7% but we had to remind ourselves again that it’s only been six weeks or so and I wasn’t put back on the third medication (glyburide) that I had been on before.

Now I can sail through the holidays without another appointment with the specialist, do the tests all over again in January and see him in February!

I still see my psychiatrist and my general practitioner in the next few weeks but all’s well with my mood overall. The only question for my g.p. is whether a stubborn, though not terribly bothersome, sinus infection has been fought off with two rounds of antibiotics.

HIV and friends

“HIV and friends” as in HIV and other diagnoses which have been visited upon me and/or HIV and how friends can, and do, help – with apologies to my favourite English teachers for lack of sentence structure.

What physically ails me most are HIV and diabetes type deux. After-effects of the broken femur and wrist are, so far, of lesser impact. Then there’s the bipolar II which, I guess, is both physical and mental inasmuch as the brain is more than the domain of the mental.

Back in the eighties an HIV diagnosis (more likely to be full-blown AIDS) on its own was devastating. I assume, for many, it still is. It was all I could think about for a while and living with, and preparing to die from, this scourge was a major pre-occupation – and I nearly did croak it must be said. Although time and good fortune have proven me more fearful than I needed to be, I still take nothing for granted.

Well then along came my diagnosis of Type-2 diabetes. Shee-it. I thought that only happened to fat people or, at least in my family’s case, people who were much older than me. After years of HIV, being told to eat whatever I wanted (calories, calories, calories), that all had to change.

Yet I can’t blame it all on my choices in eating. What about my choices not to eat? After leaving home I tended not to be a breakfast eater for many years, particularly when I was still ingesting and digesting brewer’s yeast and the like so, therefore, the fast was not broken. A perfect set-up, however incrementally, for my blood sugars to start manipulating things about which I understand little. However I get it now: if fasts aren’t broken, with regular, healthy eating, my kidneys and pancreas are going to be working like a car in third that should be in fourth – or worse, not working at all and failing.

As I anticipated in an earlier blog several months of non-adherence to my medications (except my “head meds”) left me with lab results similar to those which followed the same sort of break I took after Craig died – but at least that break was doctor-supervised. My latest CD-4 was 230 which, as my doctor pointed out, puts me at risk of getting AIDS-related pneumonia (PCP), the scariest of all the most unwanted opportunistic infections. My viral load, after being “undetectable” for a couple of years, is at 73,000 which, while not where I’d like it to be, is something in my experience which adherence to meds will knock down fairly quickly again.

As sombre as these results were the a1c, a diabetes-related test which measures random blood glucose levels over a period of weeks or moths, was 11 – the goal is no more than 7. Because I’m already on Metformin AND insulin (the first and second lines of defence respectively) much of the burden for improvement falls on me. It’s no longer acceptable to ignore diabetes because HIV/AIDS is much more serious. That’s just not the case, particularly when I know, and have experienced, good results with medications for HIV and have known some stability with my blood sugars thanks to a combination of medications and eating choices. It’s not just what I eat, it’s how often, at what times, etc.

The major part of the solution – eating properly – has seized me for the past couple of weeks and I am doing much better, both in terms of eating and the results.

My life’s work now, until it becomes more routine, is to eat well, forgive myself for slip-ups, and take my meds. It has proven to be unhelpful to either beat myself up or to be bullied into submission.

I’d love some suggestions as to what to eat, when preparing meals is not my long suit, because what I have found so far on the internet seems to be about full meal preparation with stuff I’m not used to cooking with. I’m kind of a meal-in-one-pot sort of guy.

Eat right. Meds. Eat right. Meds. It seems simple enough but, when I consider my mental health issues – as my family doctor noted – it’s understandable how I can go off course. Understandable, yes, but not insurmountable.

Easy Does It

It was not for lack of Vitamin D, absorbed during a short photography walk yesterday, that I awoke before dawn today coming out of an unusually coherent dream and gasping for breath. I knew my blood glucose had crashed; no need to waste a test strip on this. (I had been fasting since 11:30 pm to prepare for a long-overdue blood test twelve hours later.) But I knew this crash took precedence and so I sprang into action. For some reason I didn’t start with orange juice – which would have done the trick – but tore through a strip of soda crackers (with margarine AND peanut putter), then four little pods of yogurt, several gulps of milk and then – then – the direct-from-jug-equivalent of a tall glass of orange juice. And, somewhere in there, a diet cola.

I felt better but was annoyed, of course, that this was happening before the morning had even started and that I would again have to delay these tests. (I’ll see about trying again tomorrow.) I can’t say that I was completely surprised as I had probably not eaten enough throughout the day yesterday to compensate for the extra walking, warm sun, etc.

The lesson? Walking, in moderation, is good. Being out in the sun is great (even better with sunscreen!) Keeping myself – anybody’s self – nourished should go without saying. (I think I came into diabetes as a result of irregular, eat-when-I’m feeling-most-hungry eating.) Ultimately, tomorrow is another day!

Writing about being written about

I was quick to post this link to Facebook yesterday from a website in Princeton which featured an interview-by-email with me on the subject of blogging about HIV/AIDS.

Shruti Kalra, the writer of the piece, first contacted me early in the year, wondering a few things about me and this blog, and I wasn’t long agreeing to an interview which, with my limited web technology, meant answering a list of questions and emailing them back.

Surprise, surprise – I wrote more than Shruti needed but, and I hope she doesn’t mind me doing this, here are the questions and the entire answers. You might even recognize yourselves in places. (Isn’t this just like the bonus material on a DVD? – again the technologically-challenged version):

1. What is your age, occupation, hometown or current residence?

I just turned 50 last October (a milestone for anyone, let alone me). I have been on long-term disability since 1990 when I found that I could not work with the stress of HIV. I left what was my job in an international reservations centre for a Canadian hotel chain. Prior to that I worked for eight years as a radio news reporter in St. Catharines, Ontario, having completed an applied arts college program in 1980 in journalism for radio, television and film.

I grew up in Salaberry-de-Valleyfield, Québec, a suburb of Montréal and, after working in St. Catharines, I relocated to Toronto which has been home now for 22 years.

2. When were you diagnosed as HIV-positive?

The official diagnosis was in March of 1990 but when blood tests from the previous May were checked specifically for HIV antibodies they, too, were positive so I use May, 1989 as the date.

3. How did you react to the diagnosis? How did your family members and friends react to the diagnosis?

I think I was kind of numb at first – suspicious that I might be positive but hardly prepared to be given the news. I was, and still am, part of some large support groups so the night I got the news I went to a meeting, told them about my day, cried as I did so, and was warmly hugged and supported by a room with many other HIV-positive people in it – so many of whom I went on to witness in their deaths. So, while I had an immediate nucleus of support, it was very much among the walking wounded – either fellow HIV travelers or friends who were watching a generation within the gay community seemingly be decimated.

Members of my family were, and remain, very supportive. As one of my blog pages notes I had a gay brother who also had HIV. The fall which led to his death in 2007 was indirectly related to HIV inasmuch as he had polymyositis that was severely affecting his mobility – the disease thought to have been brought on, in part, due to steroid use to stave off loss of body mass caused by long-term use of HIV medications.

The year I was diagnosed, when Craig and I were still pretty healthy, my parents and I went on a picnic and I opened the conversation with, “When Craig told you he was HIV-positive to the best of our knowledge I was not.”

Mom knew where this was going and groaned, “Oh don’t tell me…”

But supportive they were.

4. How familiar were you and your family members with HIV/AIDS before your diagnosis?

Well, thanks to our experience with Craig, our familiarity was probably greater than the average family. One of the motivating factors in my being tested was news at the time showing that AZT was showing great promise as an early treatment. I thought I’d better be on it as soon as possible should I turn out to be positive. Fortunately/unfortunately my very first CD-4 count was just under 400 which, at the time, was the threshold to begin treatment.

5. A lot of patients feel overwhelmed by the frequent doctor visits and some feel overwhelmed by all the information they have to get familiar with. What was the most disorienting thing for you?

I feel as if I have almost had to become a student of medicine although over the years I have found it less necessary to understand everything, particularly the inner workings of the virus, and acquire information on a need-to-know basis. So far, I have always managed to stay at least one treatment option ahead of the game. In other words, should my current meds cease to work, I have another major “cocktail” combination as a treatment option.

6. How do you keep up with all the new information on HIV treatment?

I don’t lap it all up as voraciously as I did when I was first living with the inevitable shock of diagnosis but there have been times, such as when the so-called “cocktail” approach to treatment became known, that I read a lot. I was fortunate to be on one of the first such cocktails when its great promise was touted at the International AIDS Conference in Vancouver in 1996, which I attended. I am also under the care of one of Canada’s leading AIDS practitioners so I have access to reliable information from him.

There are a few web-sites, in addition to AIDS Beacon of course, which I follow on occasion. Not all are specifically research-oriented:

Canadian AIDS Treatment Information Exchange (CATIE)
Global Fund to Fight AIDS, TB and Malaria
Global Network of People Living With HIV/AIDS
GNP+ North America
Living Mindfully with HIV
Positive Side magazine
POZ.com blogs
Stephen Lewis Foundation

7. Describe how your life has changed or how you have changed after the diagnosis.

Well, of course, one of the first dramatic changes was leaving work but, in those early years especially, I was able to offer myself as a volunteer in a couple of AIDS organizations.

My decision to leave work was vindicated in 1993-94 when, as my doctor still discusses with people on rounds, I “nearly died” as the result of a long-term struggle with cryptosporidiosis during which I felt like I was literally shitting myself to death.

Almost immediately after my diagnosis I began treatment for major depression with a combination of medication and ‘talk therapy’.

Remember, too, that in those early years my circles of friends were involved with people dying. There were waves of deaths among my peers so I was involved with home-care teams and other community efforts to cope with what was unfolding, all the while believing I could be dead at any time.

As medications clearly started to work in extending people’s lives many of us who thought we would be dead dealt with – and I’m not the first to call it such – the “mind-fuck” of beginning to see that we would survive. It is also fittingly called “survivor guilt” but I maintain that this is preceded by, and often works concurrently with, the m/f.

8. What are some of the complications you have faced after being diagnosed with HIV/AIDS? In your previous email, you mentioned being diagnosed with a mental illness and facing physical limitations due to an accident, can you go into more detail about that?

The major depression was treated for several years with low-dose Prozac and therapy – mostly Gestalt. However, in 2003 I was struck by a car and suffered a broken femur and wrist and was hospitalized for five weeks at the height of Toronto’s SARS crisis which meant a great deal of social isolation.

I soon began to show signs of post-traumatic stress and began treatment and psychiatric care for that. It was particularly crucial that any drug therapy help me sleep which the PTSD had made impossible.

Within a couple of years what I was noticing as an absence of depression had actually become hypomanic behaviour and a diagnosis of bipolar II seemed like a welcome relief. To me, it explained a lot of my behaviour from many years back.

I should also insert the fact that in about 2004 I was diagnosed with type-2 diabetes, the gravity of which I failed to appreciate. (At 6’2” tall and 145 lbs. I could not conceive of the notion that I had what I considered to be a disease caused by over-eating, even though there was evidence that it could also be the result of long-term use of anti-retrovirals, particularly protease inhibitors.)

The bipolar II has been under control now for the better part of a year but it requires the discipline of taking night-time medications which I sometimes prolong if I’m feeling “up”.

9. Has this blog help you meet or make any connection with other individuals?

Reader/commenters aside I can’t say that it has facilitated any important meetings with new people, that I can think of, but the variety of topics I blog about, other than HIV/AIDS, has probably generated more activity. Some of my political blogging, for example, has led me to meeting with blogging political candidates. When I considered running for political office myself (one of the symptoms that led to my bipolar II diagnosis, by the way) my musings brought me some of the greatest traffic my blog had ever received. That’s understandable, given the near-manic pace with which political operatives scour the internet for news of interest to them.

Sometimes I feel defensive that I blog about so much more than HIV/AIDS but, as I said, the traffic bears out interest in other things and my life is about more than AIDS. Besides everything else I blog about is part of the passion I bring to life. When I blog about a news item which has caught my attention that’s the journalism background speaking.

10. Would you recommend blogging to other patients?

Absolutely! As someone who never kept a daily written journal blogging has helped me do that – even if not daily. I have a written record of many parts of my journey.

11. Since your diagnosis, what has been your inspiration?

I’m not sure I know how to answer that, other than to say that I believe that I am no more entitled to the best possible medical care and access to medicines than anyone else in the world. Treatment clearly is working better now in some very poor countries but more must be done to give access to all. I have been inspired by the courage of those friends who were sick and died before better treatments came along and I remain inspired by long-term survivors who continue to live into uncharted waters.

12. Do you have any advice for patients newly diagnosed as HIV-positive?

I would say surround yourself with people you love whom you can trust to share the news of your HIV status. When times are difficult they will offer you support that you would not necessarily seek from a professional. On the other hand, take advantage of any professional help you can. Many great people are trained to walk us through the early days of HIV diagnosis. Because the survivability of HIV/AIDS has improved so much over the years remember to take your meds faithfully and to live each day to the fullest extent possible. Living with this disease can feel lonely sometimes but remember there is not a large + sign on our foreheads. We can participate in life as fully as we wish and are able.