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: 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.

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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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. :)


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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!


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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!


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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

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. 

“Wah-wah-wah…”

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
.


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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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Feeling well


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I’ll be seeing my HIV specialist at the middle of next week and, regardless of what may be reported from my latest lab work, I am feeling better than I have for a long time. I fully expect that my viral load will have grown some more, perhaps my CD-4 will have dropped some, and who knows where my glucose will be (I am preparing myself for the possibility of needing insulin if only so that we can move on to returning me to my anti-HIV medications.)

Regardless of what my latest blood tests will tell us next week, I am hearing very good feedback from people – in particular people who have not seen me in awhile. Surely I am better than I was around the time of Craig’s death last May. Maybe being six months-plus sober also has something to do with it! I also like to chalk it up to being off so many medications. I do not want to press that for too much longer, however, and I take my specialist at his word that he will most likely be able to knock back my viral load in short order.

I did not intentionally go off my HIV meds but, once I needed to go off them all in order to avoid cross-resistance with others, I settled in to enjoying this time away.

I’m quite literally growing into my beard and am resisting the temptation to trim it too much – I need to cover my hollowed cheeks – until I see how it continues to take shape.

Hopefully, whatever comes following next Wednesday’s appointment, I will continue to feel well and ‘look well’, too.

-
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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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