A new low


“How long have you been wasting?” the chiropodist asked me a couple of weeks ago as she updated a history on me.

The starkness of the verb, however accurate, stayed with me.

I’ve always been thin, I said, but my weight has been falling a bit since last fall.

Fast forward to preparations for a bone density test in Women’s College Hospital’s shiny new facilities today.

I stepped up onto an equally shiny, new, digital scale.

Height: 6’3″.
Weight: 122 lbs.(just over 55 kg)

Wait, what?

On my worst weight dives I’ve never been below 130. Even at my usual 145 I’m off the BMI chart.

122?

I’m accepting fattening dinner invitations.

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.

The circular isolation of self – my 1010th post


I have a small collection of turtle ornaments on a book-case. I relate to them, seeing myself personifying some of their characteristics – slow, steady and self-deprecating to a fault, able to withdraw, when threatened, to my own delusional safety.

Someone once told me that five bucks in your pocket often makes the difference between a good and a bad day. I would just add that it’s important to discern what’s best to do with it.

This is a good day. I refilled prescriptions, overdue by a month, the self-deprivation of which I know from experience may have already done me harm. Going without them, both mood and HIV-related, has been a strain, one which I have not shared. I find fault in myself without even trying.

My auto-correct will rightly call this “awkward phrasing”:

Had I not needed to pay off a pay-per-view bill (self-centered shame involved) that was through the roof, at least in part because of being without my bipolar II meds (self-centered stigma even mentioning that), I would have felt better. It is probably for this same reason, and a decrease in food intake (fitting the stereotype of those who make choices between medicine, food and, in my case, $9.99 pay-per-view movies), that I lost about twelve pounds since I was last weighed two months ago – still 6′ 3″” (1.9m) tall, of course, but now just 130 lbs. (58 kg) for a BMI of 16.2 (underweight being anything below 18.5). How my blood-work has been affected has yet to be revealed.

The first thing I did this morning, pay-day, was go out for a Subway breakfast sandwich (far too salty!) before picking up my prescriptions. (Nothing for breakfast was available at home.)

It’s a chicken-or-egg riddle – being without money which caused me to withdraw treatment of my mental and physical health or a lack of untreated mental health which caused me to be care-free about money. ‘Twas ever thus, except I have had enough repeat experience to know that one begets the other.

I have begun to track my every expense as a first step in budgeting.

Writing this has been a detached, left-brain exercise. Maybe if I read it enough I’ll begin to feel it.

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.

Bursa – and not the city in Turkey!


The ever-increasing pain I have experienced recently now has a name – bursitis.

I’ve narrowed down the cause to being on my feet or, alternatively, sitting on concrete, the weekend of Jack Layton’s funeral.

Yesterday I began physical therapy treatments and learned that we all have bursae, at which I inquired, “As in bursitis?”, not knowing what that is, having only ever associated it with people of a certain age.

I have been given a few simple exercises to do between visits and am continuing to use my cane and choosing my chairs carefully. Nice to know a little more about anatomy, even if it takes pain to educate me.

Aches and pains of fractures of old


This post serves as a reminder of what has ailed me in recent days.

On the day of Jack Layton’s funeral I spent an inordinate amount of time on my feet, standing in one place, taking pictures, standing in line, etc. A few days later I noticed some pain in my femur, which I could only visualize as the metal device in my femur driving into the lower half of the bone. The pain seemed to pass a few days later but returned last weekend.

My family physician is away but his receptionist recommended that I try the walk-in clinic on the main floor of their office building. “Walk-in”, I have discovered, is not synonymous with fast availability as people without family doctors were given priority having booked appointments with “walk-in” doctors. I took it in relative good humour, only once getting up to ask if I would be seen by closing time – which I was and with room to spare to have x-rays done upstairs. Now I wait to see my family doctor on the 16th’

Referring to a 2003 report from my orthopaedic surgeon, which I took with me, the “walk-in, sit down for an undetermined period” doctor reminded me of the technical terms that had been lost in my memory. “Displaced intertrochanteric fracture of the right femur and a displaced fracture dislocation of the right distal radius and wrist…The patient was taken to the operating room the following day where open reduction internal fication of the proximal right femur fracture was performed using a DHS plate and screw system. Under the same anaesthetic an open reduction internal fixation of the right distal radius was performed utilizing a plate and several screws.”

Although the prognosis back then pointed to me having troubles with my wrist, and a good recovery of the femur, the wrist and radius are fine.

In the meantime, I’m back using my cane which I had stopped doing several years ago – even around the apartment where short walks seem to be more difficult as I need a few steps to get my balance and confidence.

I’m not out of commission, but am taking things easier than I’m accustomed to (which was easy enough!). No long walks are being contemplated for now.

Observations from Buckstars Coffee Shop


I’m home from picking up prescription refills to paint a story-picture.  Note to self (the umpteenth): always, always carry a pen and paper!

Having dropped off written prescriptions for repeats of my head meds, I walk briskly in the fresh cold wind over to the Cabbagetown location of Buckstars to wait.  A grande Americano should fill the time nicely.

As I pull open the door my sense of smell is flooded, not with the many varieties of beans ground here, with the overpowering smell – scent would be too subtle a descriptor – of cologne.

There, seated at a wooden table and chairs set right inside the door, is a man whose description deserves at least a paragraph so I continue to the counter and order my drink.  Then I make a quick stop in the loo while the barista does his thing.

Soon, cup in hand, I return to the front of the shop where a cushy chair is, thankfully, available on which to seat my emaciated bum – but I have to whisk by the aforementioned man first, his cologne hitting me before, during and after my walk-past.

I carefully place my cup on the table in front of my chair, tuck my back-pack beside me, and shed first my toque, then my outer jacket, followed by the inner fleece.  (I’m going to be wearing Craig’s much warmer coat tonight – it is that cold in the wind.)

Again wishing I had a pen and paper or even a phone to text myself some notes, I carefully observe the subject in the window seat.

He presents shiny black hair, leather complexion either of southern European extraction or the product of a tanning bed’s fourth visit (think John Boehner).  The cologne continues to waft throughout the front of the shop as the door opens and closes.  Although he is seated the entire time I am there, I assess that he is not exceptionally tall as his feet tuck underneath his chair quite easily.  What he lacks in height he makes up for in girth.  He is quite rotund – not a Mayor Ford (sworn in today) overweight but large enough so as not to be able to see his black shoes which are so shiny that he might otherwise be able to examine his nose hairs without any eye strain.  He wears a black mock turtleneck shirt-sweater under a big-not-tall blazer, burnt gold in colour with a faint black check pattern throughout, with matching black slacks.  I did not take note of his right side, which faced the window, but on his left he wore a large gold watch and gold accordion-style wristband, and a gold pinkie ring that rode right up to his knuckle with a setting, which filled that entire space, of what looked more like shards of glass than diamonds in a flat bed of something resembling white marble.

Yet this is not Liberace reincarnated.

He looks quite gruff so, as he regularly checks his watch, fanning his scent like a disposable air changer, I guess that he might be a fight promoter or maybe a boxer’s manager – there being a youth boxing centre nearby if I’m not mistaken.

I hum along to an ambient recording of Ian and Sylvia singing “Four Strong Winds” before I assemble my outerwear and venture back over to the pharmacy, wishing it was Christmas cinnamon and not cologne I was smelling as I push the door open.  Less is more, Sir.  Less is more.

An early afternoon visit to my doctor (the g.p.) leaves me feeling buoyant enough to record this story in my head.  Blood pressure: 120 over 80.  Weight: up five pounds.  This is all good!

This evening I again head into the cold wind for a previously-booked appointment with a CT scanner.  I have no reason to believe it is anything serious. But a year-old sinus infection, lessened somewhat with two more rounds of antibiotics recently, bears further examination by the ear, nose and throat specialist I saw a few weeks ago.  It is, it seems to me, a luxury of living in the downtown core of a city that would allow me to walk over to the hospital for an 8:30 pm CT scan.  These are my kind of hours!

An “AIDS day”


I can’t remember who first coined the phrase (and whether he’s still alive), or where I heard it, but I’m having an “AIDS day” – not as bad as they used to be,  mind you, but unmistakable all the same.

My stomach feels bloated, despite not having eaten anything solid since mid-morning, and the bathroom is my current BFF.

Despite earlier hopes of being among friends this evening I have spent the afternoon mixing analogies. To wit, I am trudging the road of happy destiny, paved with good intentions (and we know where that leads!)  Fear not, I’m not feeling vulnerable in that way but I am very sorry to be missing yet another Monday night get-together.

So, yes, an “AIDS day” is one of those days when my body just feels overwhelmed by a multiplicity of factors – digestion, or not, medications perhaps, and the ever-lingering effects of a sinus infection which – while not being treated with a third round of antibiotics (yet) – manifests itself in boar-like snorting, spitting and coughing and the occasional ear plugging or popping as a result.  You’re welcome.

Sometimes I think my outlook is too maudlin, other times I don’t think I’m self-revealing enough.  Would this be a Goldilocks post?

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.

Fussin’, ‘fessin’ and feelin’ (better)


The drug holiday hasn’t been as long this time. I just hope, as my specialist said the first time, that I still have “horseshoes up (my) ass” (medical-speak for good fortune) with no irreversible consequences.

No doubt there’s a reason my blogging hasn’t been as prolific as usual lately.

I cracked open some fear and shame today and told a group of peers that I have been taking another (unsupervised thus far) meds ‘holiday’ and needed to get back to some good old medical supervision.  Fortunately (for me, you and even the most casual contacts) I have maintained use of my head meds and have already resumed my type-2 diabetes treatments.  However, until I ‘fess up to my doctors, it’s not a good idea to just re-start my HIV drugs as if I knew what I was doing.

The first steps, getting blood work done and making appointments to see said doctors, begins NOW.

It started, or stopped in this case, earlier this year when I was floored by what seemed like a never-ending chest thing going on (we’re I’m talking New Year’s to at least St. Patrick’s Day).  During this time my appetite was next to nil, making it difficult to be motivated  – let alone consistent – with anything.  For reasons I would peg on not wanting to leave my apartment and be in public, such as in medical settings, I paradoxically sought no help from my doctors – so the ‘drug holiday’ was solely my idea.  It has continued to this day.

I have avoided doing anything about it.  I must say that it has been coverage (one has to really look for it, mind you, particularly in the mainstream media) of the International AIDS Conference in Vienna that has been a prime motivator.  Seeing studies presented, reaffirming how well people like me who’ve been on a HAART cocktail are doing, effectively guilted me into seeing how foolish it was of me to be denying myself fully available treatments that all too many are still waiting for.  There may have been deeper reasons or excuses at play as well, too – self-worth, apathy and certainly avoidance – but the time is right to get back on track.

Thanks to that group of peers for listening today.  It was very good to give voice to my angst, shame and even some hope and, by making myself accountable to them, I am ready to resume as full a life as I can dare to have.

Safely out of the foxhole – again


(This is my 800th post, by the way!) :)

Y’know that expression, however annoying it can be to hear sometimes (for me at least), about there being no atheists in foxholes?

There’s something about being ill – be it AIDS-related or just bronchial pneumonia such as I’ve experienced since December 28 – that,  while not pulling me back into an old belief system completely, makes me cry out, beseeching if you will, for some relief from an invisible friend.  That’s not unusual, I am sure, regardless of one’s beliefs or lack thereof (the crying out part anyway).

When the crisis is over, as I am loathe to declare lest a jinx be set upon me (how’s that for re-invoking the old images?), I feel so grateful for the simple pleasures – going for coffee and great conversation with a friend this afternoon, stopping by the credit union, picking up my AIDS meds and some groceries – without endlessly sniffling or honking my nose.

Getting some more of my favourite foods in can’t be understated as a salve to my sick-and-tired-of-being-sick-and-tired shell of a body.  (Believe it or not it was possible for me to lose still more weight through this episode, making it even more uncomfortable to sit down without an extra cushion.)

Bottom line – a little perspective from the other side of this long illness, not so much serious as endlessly annoying, is very positive.

Medical update: I’m likin’ this report and on such a special day, too


My weight is 62.5 kilos and, whether up or down from last time, my BMI is off the low end of the charts at 17.1. Definite room for improvement.

I have a CD-4 count of 440, up marginally from last time. In other words it is stable.

My viral load, the measure of HIV activity, is under 75 which is considered undetectable. I’ve been here before for quite a long stretch but this is the first time it has happened since I was off meds for close to a year and a half.

My mood has been pretty good overall, too, although/and/but I am challenging myself to dig a little deeper into some of my numbness.

Today is also the day I mark twenty (20) years of being diagnosed HIV-positive. While the memories of that day are gut-wrenching and ensuing bouts of illness hard to forget I have, at least, proven my then-doctor wrong by living twice as long as he had predicted – with more living to come!

Long time, no blog


It’s been awhile, I know. (Thanks for asking, Gabriel.) I still have not bothered looked into getting my laptop repaired (and the best I will likely do is a salvage operation on its files.) So it takes just a little bit of effort, roughly equivalent in exertion to opening up my snail-mail box, to come downstairs to my building’s computer centre. Yes, not even a need to have my own computer and yet…

My health has been quite good, last time all the numbers were checked, and mood-wise as well (the ‘head meds’ working for the most part). I’m due to donate another five or six tubes of blood to the various fields of research in which I participate and will likely do so before the end of the week.

I’m still addicted to politics, less Canadian than American these days, and am staying pretty much on the beam with my neuroses :)


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