The certainty of uncertainty


In my ongoing quest to get to the bottom of my annoyingly reduced sleep, I received the results of a recent MRI of my brain when I visited my family doctor yesterday and the report was clearly not written for me to comprehend.  Even my doctor was at a loss with some of the language but he concluded, “At least you don’t have a brain tumour,” which was more than I could deduce from this:

MR brain

Clinical history: New onset central sleep apnea.

Multiple sequences were performed through the brain.

The splenium of the corpus callosum is absent and colpocephaly is present.  There is a 1.2 cm gray matter heterotopia along the lateral wall of the trigone of the left lateral ventricle.  There is thinning of the optic nerves, optic chiasm and optic tracts.  The fornices are also quite thin.  The mammillary bodies are small.  The pineal is quite small.  The entire ventricular system is larger than normal.  There are mild microangiopathic changes in the hemispheric white matter.  There is a prominent cisterna magna.  There is mandibular hypoplasia.  There is reversal of the cervical lordosis.

Conclusion:

There are numerous developmental abnormalities of the brain as discussed.  The predominant abnormality is colpocephaly with absence of the splenium of the corpus callosum.  Of note is the presence of a gray matter heterotopia.

*****END OF REPORT*****

Some of the ‘abnormalities’ may stem from my prenatal and first couple of years of life.  ” Hydrocephalus Arrested” is how my mother recalls the episode being summed up by doctors at Montreal Children’s Hospital.  (Hydrocephalus is accumulation of too much cerebrospinal fluid in the brain.)  Outwardly my head was disproportionately larger than my infant body, leading me to sitting up and tipping over, occasionally knocking my head.  That it was “arrested” was of great relief to my parents because two children of two different cousins of my mother had been born with the same condition.  One died, the other spent his shortened life in a wheelchair so one can understand how worried Mom and Dad would have been for me in my early months and years..

I’m guessing the brain’s way of retaining all its history may be partly responsible for the gobbledygook in the MRI report but I’d like to hear it from a neurologist’s mouth, rather than via the cryptic language quoted above.

Sleep, no longer taken for granted, will soon be improving – hopefully


Early this month I had electrodes taped to my head, neck, chest and legs, then I was wished a good night for a sleep study to see why suddenly, to me at least, I couldn’t get a decent night of shut-eye.

The results, which I received on Monday, showed that over the course of the six to seven hours that I slept, however intermittently, my breathing stopped briefly “like you were swimming underwater” hundreds of times.

This is apnea but not the most common type of respiratory apnea; mine is linked to the brain, which “forgets” to signal to breathe, and is known as central apnea.

The news flooded over me faster than I could think of questions but here’s what I know.  I’ll be forming a very close relationship with oxygen each night, I am having a brain MRI this coming Monday at Women’s College Hospital, I go back to see the sleep doctor on August 29, then I meet with a neurologist on the third of September and with my family doctor the following day  It’s the most intensive medical care schedule I have had for quite some time..

I’m a little nervous.

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.