All good things...

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I knew when I went to bed last night that my vacation was coming to an end.  After four glorious days of minimal symptoms, they've quickly gone back to where we left off earlier in the week.  While I was hoping (expecting?) the calm to last as long as my allergies normally would, I'm thankful for the handful of days I did get.  Last night the dry feeling in my throat was back full force and today the joint pain, weird skin sensations and exhaustion are all back.  So far my eyes have been spared but the red, dry, itchiness can't be too far off.  

It gives me some degree of hope to know that a lot of what I'm feeling is a result of ongoing processes as opposed to permanent damage.  When my immune system takes a break from attacking my body I feel remarkably "normal."

For now, I'm going to enjoy this gorgeous weather and soak up every ounce of warmth and energy that the sun wants to send my way.  Monday I've got another Dr. appointment where I hope to get the all clear from my chest CT - there's absolutely no reason to expect any other finding.  With that out of the way we'll be lining up cardiology, GI and derm consults/tests to get baselines, check a few things and for me to get some guidance on what some of my symptoms mean and what sorts of changes I should be expecting.

You wanna cry? I'll give you a reason to cry!


I’m likely dating myself a bit with that title but it’s the first thing that popped into my head when I realized what was happening.  I haven’t written much about the symptoms that have come along with my recent Scleroderma diagnosis but the first ones on the scene are associated with two of the secondary syndromes that often accompany SSc: Raynaud’s (ray-NOSE) and Sjögren's (SHOW-grins).  I plan to write quite a bit on all of my symptoms in turn but right now something interesting is happening with the Sjögren’s.

Sjögren’s typically manifests itself as dry eyes and mouth.  When I wake up in the morning both eyes are bloodshot, as though I’d been out partying ‘til the wee hours, and my mouth feels like I spent the night chewing on broken glass. My glands are perpetually swollen, which is a little uncomfortable plus they make it a little more challenging to swallow.  I may have been the only Canadian who was happy to let Spring take it's time in showing up - I was dreading how my allergies were going to pile on to this mess; but I was in for a pleasant surprise.

For starters, the only reason I know my allergies are back is because of my nose – and more
specifically, what’s running out of it.  For the first time that I can remember, my sinuses aren't inflamed and angry and my eyes aren't puffy and bloodshot.  Yes, suddenly they're NOT bloodshot!  With the onset of my allergies, my immune system has been forced to ease off on attacking my body while it turns its attention to these foreign invaders.  The net result is my allergy and Sjögren’s symptoms are both muted and I'm feeling better than I have in weeks.  

I don’t know what will happen when the allergy distraction is gone, but if my immune system’s memory is half as bad as mine it will have long since forgotten what it was doing and maybe will just go back to waiting patiently for the next foreign invader.  In the meantime, you wanna immune?  I'll give you something to immune about!

The binary illusion; living with shades of grey

Having decided I wasn’t going to die from this anytime soon, I settled into the idea that I’d spend the next fifty years being mildly inconvenienced and suffer a minimum of physical changes.  That delusion lasted a whole 36 hours.

My Raynaud’s had been out of control since xmess and I had been experiencing upper GI issues and symptoms from Sjogren's syndrome for a few weeks already so I had made my peace with those and knew if they got bad enough there were a number of things we could do to get them under control.  What I wasn’t at all prepared for was a very rapid onset of issues affecting my muscles, nerves and skin – all of which seemed to appear with 24 hours of each other and get progressively more annoying with each passing day.

My head is filled with terms like arthropathy, polyneuropathy, fibrosis, chemokines, ischemia, septal infarction, renal crisis, tendon friction rubs and so many others.  While they all veer off into wildly differing territory the one thing they all have in common is the fact that this body of mine is no longer my own.  I no longer control whether or not I’ll risk heartburn by eating too much greasy food.  I no longer control whether or not my skin feels dry based upon whether I was bothered to smear moisturizer on it.  My fitness level will no longer be defined by my willingness to exercise.  Not that these things don’t have an effect – they certainly do – but their effect is now undermined by things like IL-1β and TNF-α and a million other things I’ve never heard of and may never understand.

Some of those things can be mediated by drugs but those drugs significantly increase my risk of other fun things like renal failure.  Today, this is all more annoying and inconvenient than it is debilitating.  But it was only a week ago that I was blissfully ignorant of these things so the pace of change has me worried.  The number one predictor of outcomes with my disease (Scleroderma – AKA: Diffuse cutaneous systemic sclerosis [dcSSc]) seems to be rate of change in the first few years.

Today is better than yesterday and a metric shit-ton better than two days ago.  This is a good thing but I’m struggling to understand what it all means – if it means anything at all.  The only thing I know for certain is that any illusion of control I used to have is gone.  This is no longer my body and I need to find a way to come to terms with that and stop obsessing over the day to day changes.

Why is her face doing that?

As I pulled into the driveway at home, I had a little less than an hour before I had to get DrJ at work.  I raced in and got on the computer because I had clearly misunderstood what I read earlier on my phone and now PubMed was going to set me straight. The next hour saw me spend as much time learning about P values, Specificity and Selectivity as I did looking at research.  All I managed to accomplish was to add a good helping of confusion onto the fear that was already seeping into every thought and now I had to go pick Her up.

“Do I say anything?  I mean, I don’t even know what this means.” played on a loop in my head the whole way there.  She was already concerned by this unexpected request to discuss my test results.  As I pulled up to her office I could see her outside waiting for me – she’s never outside waiting for me. Goddamnit I need a minute here to think!  As she’s getting in the car I decide that it’s best not to say anything until I see my rheum and get a better understanding of what this actually means.

Mouth: “So, I decided to pick up my test results today.”

I went on to explain the test result and that while it wasn't great news, there were lots of mitigating factors that meant it was still highly unlikely I was in that little bucket and heading to hospice care anytime soon.  I think I sounded calm and she certainly was – which was lucky for me because inside I was a fucking mess.  I spent that evening reading stuff I only half understood and then, with a few hours of sleep under my belt, we were off to hear what the Dr. had to say.  DrJ came with me since her office was closed for the holiday, but no, she had to sit in the waiting room while I spoke with the Dr.

The Dr. came in, we exchanged our usual pleasantries, she sat down and whoa, what’s that face she’s making?  I had never seen her “serious” face before.  She looks down at her hands and takes a deep breath, “Your test results came back and you tested positive for a very specific marker…” at which point I tuned out a little bit.  All I could think about was how different she was from the Dr. I had been seeing off and on for the last two years.  She certainly didn't look like somebody who called me in to tell me about high cholesterol or false positives - her face, her posture, her tone - it was all new to me. “…specific…” gawd there’s that fucking word again… “… BUT…” Wait, she just said 'but'.  But what?  Suddenly I’m back and listening.  “…test was perfectly normal.”

Me: “OK, so that negates the positive _______ result?!?”

What followed was a brief explanation of how it was I already knew about the test results, which in turn led to me also getting to see her ‘angry’ face for the first time.

She quickly recovered and went on to explain that while the positive test result firmed up the
diagnosis, other factors suggested that I was NOT in that exclusive group of people who needed to get their affairs in order.  I didn't retain much of what she said after that, my brain had already started celebrating and I never was much good at doing two things at once.  A short while later I left with a script, a few test requisitions and a follow-up appointment several MONTHS in the future because FUCK YEAH, I’M GOING TO BE FINE!!!!  

I don't know why I saw this in such black and white terms at the time but it wouldn't be long before my body introduced me to all sorts of grey.

Did *not* see that coming.

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A wrote a piece a while ago on the topic of dying with dignity and how we should be free to pick painless exit at a time of our own choosing.  I didn't post it mostly because it would have followed my depression post and I figured people would get the wrong idea.  If I were to summarize it, I’d simply say that I placed a tremendous value on quality of life and if that were to be negatively affected, I’d make the conscious and largely dispassionate decision to pull the chute.  No long, drawn-out goodbyes or endless uncomfortable moments.

I've been seeing a rheumatologist for a few years now as we worked to rule out the usual suspects when it came to some fairly minor issues with my joints.  I see her every six months and I left my last appointment with the usual lab requests.  A few days later her assistant called and asked me if I could come in the following Friday to discuss my blood work.  A few days before the appointment they
called again to tell me I'd have to get security to let me into the building – apparently the it would be closed for Good Friday.  This was the point at which I first started to think that perhaps this was more than just high cholesterol.

Patience isn't one of my strong suits – in fact on a scale of one to ten I probably rate a -754.  I was downtown the day before my appointment so I decided to stop by my GP’s office and ask them for a copy of my lab results. A minute or two later I was sitting in the lobby looking at *Negative *Negative *Negative…

The tests were ordered to rule out a specific condition – one I had never heard of before so I had done a bit of research after that last visit.  In its most severe form, it appeared there was only a 13% survival rate by year 3; but that group is a very small percentage of what’s already a rare disease.  The vast majority of folks have a much milder form where 10 year survival rates can exceed 80%.  Honestly, not much of the research stuck because quite frankly, we'd been down this ‘rule things out’ road before and the tests were always *Negative – as they appeared to be once again.

But there at the bottom of the page was one result with a number by it... a number that was above the Normal Range printed next to it.  OK, clearly this is what she wants to discuss.  The test rang a bell but I had to ask Dr. Google what it meant.  There was a lot of stuff about specificity and sensitivity and percentages of this and that but from what I could tell, I suddenly found myself in rather exclusive (if not unwelcome) company.  It’s funny… as I drove home I was thinking about that earlier piece I wrote and fuck that noise; I would not go gently. Nope, if this was going to take me then I'd be going kicking and screaming and shitshitshitshit what do I tell DrJ?

To be continued… (hint: Dr. Google isn't isn't a real Dr. and neither am I)

The best laid plans...

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In recent years I’ve been taking my photography a little more seriously than I have in the past.  Not “I’m making a living from this” seriously, but I’ve begun to care a lot more about the images I’m creating.  I’ve narrowed my focus and I have a basic post workflow that I run most pics though; I’ve always disliked post so in the past I’d simply go with an image as captured.

My focus is primarily around landscape photography with a special interest in night time cityscapes, star trails and a bit of time-lapse as well.  One thing I’ve never had an interest in is photographing people.  While I find some of the portrait/wedding/event photos I come across to be gorgeous and impressive, I’d sooner poke my own eyes out than try my hand at it.

Recently I was on vacation in Cuba and had brought a metric shit-ton of gear with me because the general lack of light pollution means the opportunities for the types of pics I like to take are exponentially greater than what I’d normally see at home.  I had a plan and a list of shots I was determined to capture over the seven days we were there.  Of course, it was a total shit-show from the beginning.  About 100 shots in, the new batteries in my intervalometer died and the *new* spare batteries I brought were also toast (normally I’d get well over 10,000 shots on fresh batteries).  I also discovered, on day one, that my camera’s sensor was inexplicably covered in dust and I had no way to clean it (it has a built-in cleaning mechanism but this problem was well beyond what that was capable of dealing with).  So, 12 hours into my vacation and my plans for the next 6 days are shot to hell.  In an attempt to salvage things, I made what little adjustments I could and worked around some of the issues, hoping against hope that I could fix the rest in post.

Back home I’m two days into working on the images and it’s pretty clear that I’ve got about 30Gig worth of trash.

At this point I decide to focus on some of the snapshots I took of DrJ and our surroundings – I mean, is it really a vacation if you don’t post pics of it on FB?  One of the pics I kept coming back to was this one.  I took this xmess morning while I was sitting on our front deck watching people and cars go by. There’s a LOT wrong with that image if I evaluate it as I would normally deconstruct my work but I don’t see any of that as I’m sorting through the shots.  In fact I still haven’t “fixed” those things (it would take 10 mins in post) and yet this is now one of my favourite images.  An unscripted, unplanned, lucky shot that I snapped while I was otherwise busy feeling sorry for myself and my unrealized shot list.

I’m still not sure what it is about that image that pulls me in, but I now realize that I need to find a way to get more of ~it~ into my landscapes if I’m ever going to find any satisfaction with my photography.  I don’t know if this image is the beginning or the end but it feels important (hence the overly dramatic self-importance of this whole thing).  And that, ultimately, I think is my challenge – if I look back at some of the other images I’m proud to have produced, I don’t feel anything.  I take no pride in this image – it was a lucky snapshot – but, and please excuse this, it does give me all the feels…


(The original post that used to be here has been moved over HERE)

Ah yes, 'tis that time of year again!

At least for this year I'm out of the prompt publishing business but my friend, writer and all round awesome human being Kat McNally is once again publishing prompts!  All the details can be found HERE and the list of prompts is HERE.

I'm not even remotely in the right headspace to be writing but I wanted to find some way to participate.  So, I've decided to try responding to as many prompts as I can (my goal is is half of them) with just one single image.  No explanation. No narrative. Just one image.  The kicker is that the image has to be one that I personally took.  If you're intersted in taking a look at my responses, I've created a separate space for them over at

Depression lies

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I didn’t want to kill myself, but I desperately hoped each night that I wouldn’t have to wake up to face yet another day.  I didn’t suddenly decide I’d had enough – for me, depression was an insidious disease that slowly crawled into my brain and took over.  I would come to learn that it had been a lifetime in the making and it could mean a lifetime of recovery.

I remember walking along a path near my home and fantasizing about laying down in the snowbank to sleep; the only problem was that I loathe the cold.  The fantasy of sleep would be interrupted by the image of me laying there, shivering and getting wet.  That’s not what I wanted.  I just wanted to drift gently off to sleep.  Over the years my sense of hope and purpose had been completely overwhelmed by despair and hopelessness.  I want to be very clear about this: I didn’t want to kill myself; I just didn’t want to keep on living.  That may not make any sense to 99% of you but then I guess there’s not a lot of logic involved with depression.

Despite these feelings, I was cognizant of the fact that maybe, possibly, I was “depressed” and there were options.  On my own, I sought help from a doctor and began taking anti-depressants (ADs).  In the days and weeks that followed, the meds weren’t helping and in my mind, depression’s worst lies were confirmed.  This isn’t treatable, it isn’t brain chemistry, it isn’t anything other than life being pointless and me and my sour mood are doing nothing but dragging everybody else down with me.  I talked about this with my Dr who replied “That’s normal; you have to understand that things have to get worse before they get better.”  Well. Let me tell you, if there’s a list of things you don’t want to tell somebody in my position, that’s gotta be near the top of the list.  I didn’t have it in me to get through anything worse.  I’d spent years trying to pull myself up by my own bootstraps/etc.  I couldn’t even imagine what “worse” could even mean and I damn sure had nothing left in the tank with which to face it.

I left her office that day knowing I’d never be back and figuring that it was just a matter of time before this all resolved itself.  When I got home, my kids were downstairs playing in the living room.  I sat at the table and very calmly considered their future without me.  I decided I’d take one last run at this depression thing.  I told my spouse where I was in my head and about my latest Dr’s appointment – I didn’t know how she’d react but at least this way, I reasoned, I’ve given it my best.  I tried.  She picked up the phone, made some calls and we were directed to the CAMH emerg/intake centre.

We put the kids in the car and headed downtown.  I can’t honestly say I was hopeful as we drove in – the truth is I knew it was pointless – but I didn’t want people saying I hadn’t tried.  Everything just hurt so much at that point all I wanted was some peace.  That’s a word that had been swirling around in my head for months – Peace.  I didn’t want to die, I just wanted peace.  Depression convinced me, in the most absolute terms that peace wasn’t to be found amongst the living, and in fact the longer I hung around, the more people I’d drag down with me.  My kids deserved better than that.

The CAMH folks were great.  I got hooked up with a psychiatrist who got me on meds that worked and who took me on as a patient and helped me get things turned around.  They literally saved my life.

The world of depression isn’t monolithic.  Not all depressions are the same but having somebody to talk to about it could mean the difference between life and death.  I know people who have treatment-resistant depression who willingly endure ECT and hospitalizations in an effort to temporarily end the horrible thoughts.  They say talking helps.  The feelings of isolation, pain, loneliness and worthlessness take over our brains.  Talking helps.  Just saying the words out loud sometimes is enough to shine a different light on things.  I don’t know what part my kids played in my decision to try one last time to get help. I really don’t know. What I do know is that the idea that I should have been willing to endure endless pain simply because I had kids is ridiculous.  The fog of depression convinces us that the opposite is true – our existence is harming our children – “they’d be better off without me.”  I can understand the hurt and anger of loved ones who’ve been left behind.  I understand why suicide is viewed by some as cowardly or selfish but that couldn’t be further from the truth.  In that place and time, releasing your loved ones from being drawn further into the abyss feels like the purest act of love of which we’re capable.  All we want is peace.  Peace for ourselves and for our loved ones.  Depression lies to us and tells us that’s the only way. Talking helps. 

It isn’t easy to broach the topic with somebody and it can be incredibly uncomfortable to have those conversations with somebody in need.  There was a brilliant commercial on TV recently.  It was a mother who was clearly at the end of her rope in dealing with her teenage daughter.  “It isn’t easy to live with a teen.” Flashed up on the screen then they showed the woman sitting on her child’s bed, in tears: “It’s harder living without them.”  Talking helps.  If you’re depressed, talk to somebody.  If that doesn’t help, talk to somebody else.  If you think your child, spouse, co-worker, neighbour, babysitter, cousin, mailmain/etc is depressed – talk to them.  It will be uncomfortable but funerals are worse.  Talking helps.  I’m not suggesting we can save others just by talking to them but we can make sure they know they’re loved, cherished, they’re important to us and that they’re not alone.  Please don’t tell them to suck it up, or that they have it good compared to XX.  I’ve enjoyed a life of privilege and if there’s one thing that Robin William’s death should make clear it’s that depression doesn’t discriminate.  Having money, friends and being adored by millions isn’t enough.  But.  Talking helps.

It's every man, er, every woman and child for his or herself!

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My fellow (North) Americans,

The internet blew up today with people voicing their reactions to the Supreme Court of the United States’ ruling on Hobby Lobby versus the Affordable Care Act.

I think a lot of the anger directed towards SCOTUS, and Hobby Lobby for that matter, is misdirected.  Those five conservative judges were installed in their positions to be able to carry out partisan work just like this.  The owners of HL are crazy right-wing Christians who believe all sorts of silly stuff and would love to rid their great country of liberals and non-believers.  Hey, they’re allowed to be crazy.

What I think people are missing is that what happened today is perfectly in keeping with the desires of the Republican party.  There are countless other examples throughout the States (and I won’t even pick on the low-hanging fruit of AZ) of Republicans trying to dictate what women should or should not be allowed to do with their bodies – especially when it comes to procreation.  This too, is perfectly ok.  The GOP is a party that’s run by rich, heteronormative, white men for rich, heteronormative, white men.  There’s no avoiding that fact.  Sure, they tolerate women, gays and brown people so long as those people know their place and behave accordingly.  Just don’t get all uppity or step out of line.

What does have my blood boiling however is the number of women, immigrants and members of the LGBTx community that belong to, support and defend a party that openly wishes to marginalize them.   Now, if you’re a self-hating ______ and support these policies then go nuts, but, if you’re going to tell me that you “overlook” these things because you’re a fiscal conservative, that not *all* Republicans are like this or that you’re “working from the inside” to change the party - bitch, please.  Oh, wait, but you’re a Republican because you believe in small government!  I’m sorry cupcake but small governments don’t spend trillions of dollars waging wars around the globe; we all know how much the GOP loves their defense spending. Seriously, folks, get a grip.  You’re not changing the party from the inside; YOU make it possible for them to behave this way!  You’re who they point to when it’s time to win over your demographic so they can be empowered to further subjugate you.  You’re not one of them.  They haven’t accepted you as one of their own.  They own your ass and soon you’ll be picking their proverbial cotton.

Imagine what would happen if the GOP only put forth candidates who are truly representative of their platform?  Imagine all the Kochs the public would be faced with at the ballot boxes.  The porcine 1% who would be forced to be seen to be doing their own bidding.  The GOP is a party of elitist bigots and racists who are hell bent on pushing their own agenda; an agenda that does nothing but harm the vast majority of Americans and particularly targets those most in need of protection and support.  Leave. Leave in droves and watch the party implode; maybe then there’ll be an opportunity to start something fresh from the ashes.  But until that happens, you’re the problem you keep bitching about.

Feel free to vehemently disagree below.


Why I hate twitter today.

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Lately it seems as though twitter has been overrun with people who are out to set the record straight.  These people, and only these people, know what it means to be a feminist.  Only they know what kind of privilege everybody else is obliviously basking in.  They, and only they know that everybody else’s opinion on the Dylan Farrow tragedy is complete and utter crap. And they just wish the rest of us would shut the fuck up already (actual tweet from my TL today: “If you're convinced that "we can never know what happened" then SHUT YOUR MOUTH. Why are YOU even talking?”).

Twitter started to seriously rot my shorts as the Dylan Farrow tragedy picked up steam online.  The
common theme that danced through my TL was that “victim blaming” was in full effect and some people should die.  Apparently some folks had the nerve to suggest that perhaps Woody hadn’t assaulted this young lady in the way that she had described and that none of us would likely ever know one way or another.  Ah, “victim blamer”, the sweet catch-all phrase used to immediately dismiss folks as evil and put a stop to any conversation.  I dove into the matter and read as much as I could find from the original case some 20ish years ago, as well as a few interesting pieces on the weeks and months leading up to the release of Dylan’s letter and some mechanics behind how it got published.  It’s my opinion that Woody probably did not assault Dylan in the way that Dylan remembers.  Having said that, there can be absolutely no doubt that Dylan has been victimized and I suspect she absolutely believes everything she put in that letter.  I think this poor woman has been through hell and to the extent that publishing that letter helps her to heal, I support it.  I’ve not shared this opinion on twitter because these are the sorts of issues that tend to attract more name-calling than intelligent dialogue.  That and the fact that my opinion couldn’t be less relevant to the people affected by this tragedy and fighting over facts that likely only one or two people alive know, is pointless and ridiculous.  Having said that, my opinion on the matter is no less valid than yours and I’d bet it’s a hell of a lot better informed than most.

Aside from the Allen/Farrow disaster, I started to notice trends along similar lines.  Everybody claims to know what feminism is and that everybody else is “doing it wrong.”  Everybody else is abusing and misusing the term.  We have folks sitting home in their PJs on a Wednesday afternoon sending out tweets from their iPhones about how everybody else enjoys “privilege” and how this affects their lives.  Much omniscience.  So enlightening.

You want to share your opinion with the twitterverse?  Awesome!  I know I’m incredibly opinionated and frequently spew forth my views on any number of topics – some of which I know little about, but, I’m not going to let that stop me.  Sometimes, I’ll even do this in an inflammatory way, hoping to trigger some opposing viewpoints.  What I try not to do, is to tell you to “shut your mouth” because your opinion differs from mine.  I suspect there are many (equally valid) definitions of feminism that are anchored in common themes.  I suspect that the biggest privilege that folks are blind to is the privilege they they enjoy themselves on a daily basis.  And there’s not a single person on twitter who does not enjoy some level of privilege.  Does Trump enjoy more that most?  Sure!  Kanye? Of course.  But so do you, just maybe to a lesser extent.

My beef is that twitter seems to be heading towards a binary world.  There’s right, and there’s wrong.  There’s black and there’s white (it was actually a tweet about black v white families that pushed me over the edge earlier).  Rich and poor.  Fat and skinny.   That’s the kind of world that most kids live in, but as adults, we should be able to see that everything falls on a spectrum somewhere between 0 and 1.

I realize that my follow list is in urgent need of surgery to cut out these cancers if I’m going to continue using twitter and I'll spend some time doing this in the days ahead. 
It’s important to remember that the entire world, with one trifling exception, is made up of others.  Others who also have opinions, many of which are far better informed than your own – so listen up, engage in conversation and be open to revising your views.