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🙂


Computus interruptus, Part Deux

My computer woes continue but I am getting used to the necessary changes (taking the elevator to the computer centre just off the front lobby of my building, for example. While I try to look presentable it need not be a fashion show.)

To add insult to injury the web-based email which is associated with my sick laptop’s IP account was not accessible today. So I’ve switched to Gmail.

I had another great check-up at my doctor’s this week. My viral load still isn’t completely extinguished but at 68 I might be able to name them all. The CD-4 is 500. My blood sugar is excellent, too. Doc said I’m looking better than I have all year. I won’t have to wave off the boyfriends, I’m sure, but it is good to get such good feedback.

My mood has been good, too. I know that because I’m rolling with a few stressful situations and I am not yelling at drivers on their cellphones.🙂


Medical update: the news is great!

My CD-4 count (an indicator of immune system health) has doubled to 520 and my viral load (which detects the level of HIV in my cells) has dropped precipitously from 125,000 to just 271.  Notwithstanding the ultimate goal is “undetectable” this is a major leap towards that.  My diabetes, too, is under control and I have managed my way through just a couple of “lows”.

This has me back to the condition I was in prior to my brother Craig’s death in May of 2007 and, in the case of the diabetes, even better. I feel like some more time has been bought!

My mood, i.e. my bipolar condition, has been stable for a few months now, too.

Now I’m off to Perth to spend Hallowe’en with my Mom, sister and Craig’s partner. (It’s just the way a get-together fell into place.) Trick or treat!


Medical update: Minimal side effects so far

It hasn’t been too long since I checked in about my health but, seeing as that was kind of a new beginning, I thought I would report that all is going well – at least as far as I know. I’ll get the results of my blood work-up in a couple of weeks. Most important will be my CD-4 count and my viral load. When last checked the CD-4 needed to come up and the viral load had a fair distance to drop to ‘undetectable’.

The diabetes is going okay with the insulin. I had to actually drop it a little in the evening as I had a few ‘low sugar’ episodes, which are quite unsettling – particularly the one when I woke up in the middle of the night in a panic.

I have fewer HIV-related pills and capsules to take now (5 in the morning, 4 at night). At night I also take my insanity stabilizers which have been working well, too. There was one night of what I thought was hypomania but I managed to stay indoors and out of trouble.

Someone who hadn’t seen me in a few months told me today he thought I had gained weight, indicating that I seemed to be showing a bit of a pot belly. The sad fact is, however, that I am so underweight my tummy only seems big compared to everywhere else. I’m trying to keep my sense of humour about it, comparing my physique with a praying mantas, especially when my woven pack-sack slumps down my back. I don’t actually know if my weight is down or up or if, as it was at the last doctor’s visit, I have simply stopped losing.

As the cooler weather creeps in I’m wishing I could store more food to insulate my bones. In addition to the occasional meal replacement drink I’m trying to bulk up with avocados and cashews. Other suggestions would be most welcome!


Medical update: My 16 month ‘holiday’ is over

I am back on meds to fight the good fight with HIV. (Don’t worry Medic-Alert, I’ll be emailing you soon.)

With the help of a lot of insulin, steadily increased since I started it July 17, my blood glucose levels are well enough in control that my doctor told me today that “We’re ready” or “It’s time” (I can’t remember which but both apply.)

My viral load is 125,000 and my CD-4 count is 260.

So, in addition to my “head drugs” for bi-polar II (1200 mg Lithium and 15 mg Mirtazapine), another drug for diabetes called Metformin, and Crestor for cholesterol, the HIV rundown is Viramune, Truvada, Prezista and Norvir.

This so-called drug holiday came about as a result of leaving one drug at home when I dashed away during the crisis in Montreal in late April and through May of last year. In order to prevent cross-resistance my doctor told me to go off all meds rather than do it piecemeal. Then when I got home I wasn’t looking after myself very well, to put it mildly, and yet my blood work was still pretty good so my doctor and I agreed to continue with the break. Then my diabetes began to worsen and, after tinkering with Metformin and Glyburide for a while (I was needlessly wary of insulin), I agreed to start insulin in July.

While all of this was going on my psychiatrist was working me up to a more diabetes-friendly combination so it’s been quite a project but I am optimistic that September will bring good health in every respect.

(Judging by the pain in my seat I know I haven’t gained much, if any, more weight.)

Feeling: Optimistic

My diabetes journey has moved on to insulin injections

It was no surprise when, after reviewing my latest blood glucose monitor readings, my HIV specialist prescribed insulin injections. (He’s been working on me about this.) Diet was not doing enough and the pills could only do so much for so long (approximately three years). I had already been to a diabetes clinic at Women’s College Hospital earlier this month so I was preparing the ground for this. I went back there yesterday with my prescription and to learn all about insulin pens, needles, insulin vials, etc. It was a lot of information to take in but very helpful staff, a nurse and dietitian, gave me hand-outs and wrote down very specific instructions as to when to take my shots, when to test, etc.

This morning I laid everything out on the floor in front of my recliner, like the pieces of a model airplane, read the sheets of instructions, and very tentatively prepared for my first injection. (I didn’t inject last evening because I had taken one of the old medications yesterday morning.) For someone who can’t stand to watch as my blood is tested, this went very well. There is no blood to see by poking the needle in and then gently pushing the plunger (pen cap). It went fine but it’s going to take awhile before I can just discreetly slip into a washroom during an evening meal, peel up my shirt and plunk a shot into my side. (We decided the only place I could possibly find enough to pinch for the injection is on either side of my abdomen, parallel with my belly-button. My weight, stretched over a 6’3″ rack of ribs, is only 130 pounds. That’s down ten pounds since the end of April.)

I was a little freaked out yesterday but 24 hours has eased my anxiety somewhat. So three scoops of ice cream for everyone!🙂


Shaking my fist at diabetes

The point was driven home today that diabetes is a bigger threat to me right now than nineteen years of HIV/AIDS.

I’ve heard it before and frankly, despite taking blood glucose-lowering medications, I just haven’t managed to get the crucial numbers under control. 

Things went off the rails this time last year, with Craig’s accident and death, as evidenced no more clearly than by my doctor’s review of my chart – last year’s – today.  I had been expecting results from last week’s blood tests and, without realizing he was reading April 2007 results, my doctor today rhymed off numbers I have not had since…well…last April. 

The expression on his face changed when he had last week’s results faxed over and all I heard, after confirming the news was bad, was Charlie Brown’s teacher giving me the latest readings. 


I’ll write them down when I see my HIV specialist the week after I get back from Montréal.  He’ll be quite upset, methinks, (although non-judgmental and ever-cordial) and it would not surprise me if he started me on insulin, a threat that has hung over me for a few months.  Ugh!  My doc today suggested I at least try to improve my daily results between now and then.

I have been cooking for myself much more in recent months, thanks to my slow cooker, but I do go overboard with sugar cravings in the evening too close to bedtime.

I hate having to be so mindful of eating.  Eating, especially eating well, has always been a necessary evil at best – and, while I do get some pleasure out of others’ cooking, meal prep for me has mostly been drudgery.  If Ensure or Glucerna could keep me alive I’d be fine with those little cans.

It used to be, with AIDS hanging over my head, I was encouraged to eat whatever I wanted.  That changed a few years ago.  Then since last year, after having to go off my meds during the crisis with Craig (because I hadn’t packed all of them – and to take some without others risked cross-resistance), I’ve only been taking my diabetes meds.  Goodness knows how bad my numbers would have been without those!

Anyway, I am ranting and full of enough self-blame to be able to minimize the impact of any ‘I-told-you-so’ anyone could offer, kindly or otherwise.

I don’t know where I’m going to pinch an inch to take insulin (at 6’3″, 140 lbs. soaking wet)…but, if I don’t cement myself in self-pity first, I will do what I have to do.

The early stability of the HIV, in the first few months of being off those meds, has not lasted.  As much as I feel so much better off them, it’s time to get back on those babies and so if that means taking insulin I guess I’ll have to roll with that.

I see my HIV doc and my shrink on the same day one week after I get back from Montréal. Just the way it worked out🙂

P.S. Suspicious as I am of potential spam, I’m pleased to say that I found a very useful article on the rationale for glucose monitoring by following the first comment here to
Amy’s site


Medical update – I like them apples

Good news from my HIV specialist today.  My a1c has dropped from ten percent last time to eight percent as of my last test just prior to Christmas, so my diabetes appears to be coming under control again.  The scare raised my sugar-consciousness, with a little help from medications, and these are the preliminary results.  I continue to monitor a couple of times a day, though, as there have been some spikes when I have been less careful eating.

HIV-wise, my CD-4 count is 370 (16%), but my viral load is up quite a bit to 77,000, albeit just one snapshot in time. 

As trends go “Fletch” is very pleased with my turnaround and doesn’t need to see me again until the end of March and, without my asking (although I did get him to repeat himself), he is not putting me back on anti-retrovirals yet.  I had anticipated that he might.  Perhaps next time, as we see if my glucolse levels are indeed trending downward.

The doc thought I looked healthy, as so many others are saying I look, so I’m going to run with that until we meet again.


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Dieting with a B.M.I. well off the light end of the scale

I have never, ever, been overweight and even when at my young and healthiest I was probably underweight. Is it any wonder, then, at historic low weights I can’t get my head around being diabetic? Diagnosed with Type-II in 2005 it has been a struggle or, more to the point, not enough of a struggle to get it under control ever since. I think I have been in denial as to how quickly it could affect my overall health.

Right now, as far as my HIV specialist is concerned, it trumps the need to get back on my antiretroviral regimen. Knowing him to be a “hit soon, hit hard” guy with HIV meds it is very revealing that he will not yet re-introduce my HIV-specific because they would likely negatively impact my blood glucose levels. In other words, even absent other potential contributors, my diabetes is out of control.

I can admit that I do not eat enough and that what I do eat is not the variety of healthy foods it needs to be. But it’s not like I’m sucking sugar cubes. While I do occasionally stray over the line, as far as eating sweets, it is most likely the more hidden forms of blood sugar that impact me more. That said, lately I have been sustaining myself on “Oatmeal Crisps”, with dehydrated fruit, and fruit-infused, pre-stirred yogourt – all mixed together in a large bowl and covered with 1% milk.

This must change. I have book-marked web sites which have recipes for diabetics and I have dusted off my Crock Pot to make some healthy meals. Now, in the spirit of The Serenity Prayer, I need the courage to change the things I can.

Things like a feeling of entitlement to good health. It’s amazing how tough that is for me! Things like approaching meal preparation as a good way to spend time rather than a necessary evil! While my stomach has probably shrunk a little, as I notice I take fewer second helpings, I haven’t lost my appetite.

The alternative, which I heard loud and clear from the doc yesterday, would be insulin injections which would raise the question of where could I possibly squeeze enough fat together to insert a needle? Besides, that seems like such a drastic step which I would like very much to avoid.

Motivation – that’s what I must have. And it must be more than a deep desire not to have my mother see another son die before she does. While that may be my worst fear, it may not be enough to keep me alive. There’s a fighter within me – my survival proves that – I need to encourage.

I don’t need lectures. I need to love myself back to health, at least to the point where AIDS is my most pressing health issue again.

This will be the substance of my “check-in” tonight for the new long-term survivors group I am part of for the next few months. It is an inter-agency project of the AIDS Committee of Toronto, The Family Services Association’s David Kelley Program and the Mount Sinai Hospital Clinic for HIV Concerns.

The good news is that my CD-4 count is still 400 (not bad) and my viral load is what my specialist called a very manageable 12,000. We have doubled the dose of Glyburide, one of my two diabetes meds.

Now…what to eat…
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Medical update: An amazing check-up

To refresh your memory, I have been off one of my HIV meds (I forgot it at home) since the day after Craig’s ultimately fatal accident on April 24.

While I stayed on everything else while in Perth, I went off everything – more or less – when I had quite a breakdown upon my return to Toronto over the May holiday weekend. I did the obligatory blood test a couple of weeks ago and was anxious, and not optimistic, about the results which I received today from my HIV specialist.

Viral load: undetectable. I can hardly believe it (and I’m still skeptical)
CD-4 count: 340 or so (an immune system snapshot; this is a significant drop but “not surprising”, given the circumstances, according to my doc)

He wonders how my diabetes might have changed through this process. Surprise, surprise I haven’t been monitoring my sugars🙂

So my only assignment for the next week is to poke my fingers a couple times a day. If my sugars are high, I’ll call him and go back on one of the diabetes meds.

In any case I’ll be seeing him again next week.

Meanwhile, we are in agreement that I could use a break from all my other meds. The unitended break has not been too harmful so far, apparently, so he is not concerned about a major HIV relapse happening in a matter of days or weeks. When I do go back on whatever combination is found to be workable I will need to carry an alarm to remind me to take my meds because I have fallen away from some good discipline along those lines.

“Fletch”, as he is affectionately known, was genuinely sorry to hear about everything that has happened over the past couple of months and seemed to understand how I could come off the rails as I did.  For as long as I’ve been a patient, some seventeen years, we have not needed to discuss my drinking problem.  Abstinent, as I was most of that time, it had not been an issue until recently.

He asked me how I was doing mentally.

I said, “Better now.” I told him that drinking, as I was, affected how compliant I could be with the bipolar meds. Getting back on those was my first priority when I started to sober up a week ago.

Obviously he is pleased with the steps I have taken to recover.

I feel like I’ve caught a big break – again. Not that I am not due for a break or two, because I can honestly believe that I do deserve to get through these days. I have been a good, involved, compliant patient for many years and Fletch even refers to me as one of his “stars”. Coming from a man with his unbeatable credentials I feel privileged to receive such accolades.  Craig, Fletch pointed out, did not die from HIV/AIDS and he wants me to hold on to the hope that I may not either.

I deserve good health. I deserve recovery. I am going to do what I can to make sure I make lemonade (sugar-free if necessary) out of at least some of the lemons.

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