Double Vision…

Today’s photo is in honour of sleep. Glorious sleep.

Last night I had the longest stretch of sleep that I’ve had in several years, thanks to a new pain medication that I’m trying. I can’t say that it’s helped yet with the pain (it can take several days to weeks to become effective) but one of the side effects can be unusual tiredness.

It was with a bit of shock when I woke up close to noon today, realizing that I’d had over eight hours of uninterrupted sleep. I’ve become quite used to going to bed around 3 or 4 a.m. and being wide again just a few short hours later.

Not only did I have a great night of sleep from the one dose, I fell asleep again for another three hours this afternoon. It’s not so much about catching up on my rest as it is to have had fewer hours awake having to deal with the pain.

I’m not sure how this new medication will work out, it can have some undesirable side effects. We have yet to see if it even helps with the pain, the documented success rate is about 30%.

But just for last night’s rest alone I’m grateful.

Another side effect is double vision, which lasted for about half an hour after I woke up. The vision issue reminded me of an image I’d created about six years ago, called Trees in a Dream.

An aside, a few blog readers had asked if I was going to post portraits on my website again. I have added some, and hope to change them up from time to time. http://www.theintrepidlens.com

The link to download this photo is here:

https://www.dropbox.com/s/wybp4jafe6nu00k/IMG_2732.jpg

When the Rubber Hits the Road…

Not one of us can escape the reality that our life will come to an end. We’ll all die whether it comes quickly without warning, or we’re given time to deal with what’s to come.

Given that it’s something we all must experience, why is it so difficult to talk about?

I should clarify that. It’s become commonplace to see advertising for life insurance, cemetery plots, funeral services and crematoriums – the death part. When death is seen as something not to be worried about until far off into the future is doesn’t seem so ominous to most.

What we seem to struggle with is the time leading up to death when it’s known to be not that far off. On one hand we’re encouraged to write a will, appoint powers of attorney, decide what we would want for ourselves should serious illness be something that we’re faced with.

Does it matter what we want for ourselves? It ought to. In my humble opinion It ought to matter very much. I believe very strongly that we should have a say in how we want the end of our lives to play out. Whether your wish is to have every reasonable measure taken to prolong your life, or your wish is to have little to no intervention to alter the course of your illness (or something between the two), you have a right to speak up for what you deem to be best for yourself.

When dealing with end of life, so many choices are already taken away from us. Serious illness can rob us of our physical abilities, our mobility, our sense of wellbeing, our security, our freedom, our livelihood, our finances, our dignity, our dreams and plans for the future, and even  the company of our family and friends while we’re still here. I personally have been hit on each of these fronts, on some harder than others. And serious illness can, and likely will offer significant consequences in the lives of our loved ones. I need only look into my daughter’s eyes to see how deeply it hurts her to watch me deteriorate in this way, and recognize how my illness has turned her life upside down.

If I haven’t yet made myself clear, I am a strong supporter of end of life options. I embrace the possibility of a gentle death for myself, we know with certainty I’m not going to get better – every week that passes becomes more challenging.  My daughter and many close friends have made it known that they understand and support my position on the matter. The difficult events of the past week (a meeting with my palliative support team, and numerous conversations leading up to it) have only strengthened my conviction for a gentle death to be an option available for all Canadians at end of life.

Recent announcements by the Ontario government suggest that this province may soon follow in Quebec’s footsteps (where introduction of the bill to the legislature was welcomed with a standing ovation) in bringing forth legislation to permit physician assisted death. I applaud this move, as do many other Canadians if the polls are accurate.

Wherever you sit on this issue, I would encourage you to watch a movie entitled “How to Die in Oregon”. Not yet available on Netflix Canada, but it can be rented/purchased on iTunes. If you’re visiting me and want to see it, I have a copy and would watch the movie again. I’ll provide the tissues.

Even if physician assisted death is not what you would choose for yourself, is it something that as a society we want to deny to those who are suffering with terminal illness who desire a gentle end to their suffering?

I’m not even sure if a physician assisted death is what I would choose for myself if it were available, but I would find great comfort in knowing that it was legally available should I feel unable to tolerate the circumstances of my illness any longer.

This is a contentious issue, and I wish no disrespect to anyone whose personal beliefs are contrary to my own. I do ask however to be respected for my own experiences of walking in these shoes. When the rubber hits the road, you may (and perhaps unexpectedly so) find yourself wanting to have options available to you should you be dealt a terminal prognosis coupled with unrelenting pain and suffering.

Your Chance to Strike it Rich…

Aside from some truly enjoyable visits with friends, this week has been a quite the downer. I’ll eventually get around to writing about the events of the the last few days and the coming ones, but I’d rather end today on a higher note.

I’m the queen of thinking of creative solutions for predicaments, but then saying “someone should invent a device that does…” without realizing that I’m the one who just then might have invented something quite useful . Many ideas I’m sure would have been complete duds, but had I invested a bit of time on research and development I imagine that it’s entirely possible that I’d have a patent or two under my belt.

When I was in the corporate world, for years I worked  with a woman who then and in the years since, has been a close and trusted friend.

D. and I have never been at a loss for topics to discuss, and can’t imagine a subject that we’ve not chatted about at least once over the years. Many times she’d hear my ideas for a new product (often times we’d quickly agree that it was one for the trashcan) but occasionally she’d tell me that I really ought to act on the notion.

One idea particularly sticks in my head. I detest feeling cold. I’m not that thrilled about feeling overly hot either, the Canadian spring and fall seasons are by far my favourites. I prefer temperate rainy, foggy days and my photography archives certainly reflect that.

Wouldn’t it be a great idea to invent a vest that’s battery operated for warmth, just like an electric blanket? D. jumped all over that idea, and every time I mentioned it she urged me to pursue the concept further.

Jump ahead fifteen years, and I’m going through one of my experimental ECD treatments. And I’m cold. Not just chilled, but iced down to the bone. Walking around the house wearing a blanket tightly wound around me even though it’s on the cusp of officially being summer, kind of cold.

I was already in pretty dire financial straits by this time, about to be without a home and absolutely no income other than the proceeds of a garage sale (a whopping $263) to get me and Suz through who knew how many months ahead.

Time to kick that electric vest idea into gear!

That high lasted all of the two minutes I needed to search the internet to see if someone else had the same idea.

They had, about three years earlier. Had I acted on my creation way back when, I might have had a good ten years or more of raking in the big bucks.

Of course chances are that would never have come about, but it gives me pause sometimes to think about the ideas that got away from me.

Now I’m going to pass the baton over. Something needs inventing, and it needs inventing badly. Somebody please invent it, and make a gazillion dollars in the process. Put a little aside for charities, I have some names of wonderful organizations to offer up.

Wireless oxygen delivery. I know, I know, a crazy idea. But perhaps one day people like me might be able to free themselves of the long tether and put away those heavy portable tanks.

One of my visitors this week is a brilliant man whom I’ve known since he was a brilliant boy, before we started kindergarten. He agreed that technology needs to catch up in order to adequately power a tiny oxygen concentrator, but it’s not out of the realm of possibility.

So go forth. Make the big bucks and help millions of patients who like me are tired of feeling like an animal on a lead. And make sure my friend D. gets a commission out of it, will you?

Might You Be Able To Help?

Yesterday was a source of many reminders to myself for topics for future blog posts, but there’s something that I wanted to share that’s of greater importance.

Over the years I’ve mentioned the tremendous support that I and other ECD patients have received from the Erdheim-Chester Disease Global Alliance. Rather than paraphrase the goals and significant accomplishments of the Global Alliance team, I’ll provide an excerpt below from the email I received.

After the excerpt, there’s a link that we members are being asked to share, I do so gladly and in the hopes that perhaps a few of you might consider a donation to help out this wonderful organization. If you’re short on time, I’ll make this even easier with this link for online donations.

http://www.razoo.com/story/Ecd-Global-Alliance

We need your help.  Progress is being made in learning more about ECD and raising awareness, but there is still much to do.  Unfortunately, many activities take funding to accomplish.  As an organization we are committed to helping patients rather than focusing on raising funds, but the fact is that funds are needed to accomplish many of our goals.  Many of you have already volunteered and made donations this year, and we thank you greatly for your contributions. 

The following are but some of the organizational activities that are ongoing at this time:

· Funding a third research study devoted to learning more about ECD

· Hosting the first ever ECD Medical Symposium 

· Teaming with researchers who are actively studying ECD

· Hosting the first ever ECD Patient/Family Gathering (Nov. 1-2, 2013) 

· Creation of a video to explain ECD

· Supporting patients/family members through the chat sessions, www.rareconnect.org, phone calls, emails, etc..

And here’s the link to the letter with even more detail:

https://docs.google.com/document/d/15aYDikRHfNsMET3GlwtQSxs3fJMJAR21lT2BC9BsCCQ/edit?usp=sharing

If you got to the end of this post, I extend my thanks for reading about what the ECD Global Alliance is doing for patients like myself. I truly don’t know how I would have waded through the realities of dealing with this illness without their support and encouragement. Special thanks and much love to President Kathy Brewer, a woman who moves mountains for we “ECD-ers” and our families.

Dropping the Ball…

Not a ball exactly. A little pill less than a quarter of the size of a pea. But what an important little pill it is.

It was 2:30 am when I was getting to bed, and as usual had reached for my night time dosage of my medications. My hands are often quite shaky, and one of the pills slipped between my fingers. I noticed before I had put them to my mouth, usually I do a quick inventory with my tongue to make sure no pill went astray between hand and lips. You can’t be too careful when your hands aren’t steady.

In the dimness of the night light, I couldn’t tell which of my pills was missing somewhere in the carpet. My first thought was concern that the cat would get to it first. He’s quick, and I’m not able to reach the floor. My second thought was the hope that it wasn’t one of the expensive meds for which the dosage is closely monitored by the insurance company. The carpeting in this apartment is pretty grungy and the thought of putting the dropped pill in my mouth was completely unappealing.There’s one medication in particular that I can’t get refilled until I only have just two pills left, the insurance company will only cover thirty days worth at a time of any of my meds. And no automatic refills so my doctor has be bothered each time. There is no end to the additional red tape that comes with being of palliative status, I really didn’t need a replacement pill being one more headache for me to address this week.

I needed Suzanna’s help, calling over to her side of the bed to give me a hand. She quickly got up, found the pill and got me a replacement. It had been my beta blocker, a cardiac medication used to help regulate my very irregular heart rate. Not taking it would have been problematic, as would accidentally taking a double dose if in the dark I had guessed the wrong medication to be missing from my hand. Thankfully it wasn’t a pill which would require a call to the pharmacy, it’s the one for which I need to adjust the dosage based on how my heart is behaving so I’m provided with a bit of wiggle room in my supply.

Prior to the last six months or so dropping something wouldn’t have been such a big deal. Not being able to pick anything up off the floor has been very frustrating for me. Adding to the frustration was the fact that I had taken off my oxygen a few minutes earlier to wash my face and brush my teeth, I was unable to get enough air to speak to Suzanna. I had to communicate with her through gestures and whispers.

Ever so gently she placed the replacement pill in my hand, and after I put them in my mouth she handed me a glass of water. These days I have to hold a glass with two hands to drink, and my teeth clink annoyingly against the glass as my hands shake.

She then replaced my day bed wedge (steeper to allow me to lay at a higher angle in bed) with the night wedge (my head and chest needs to be raised while I sleep to help avoid the dreaded night coughing and gasping).

Suzanna takes wonderful care of me, but I can’t help but dread what else my failing body will cause me to drop the ball on. With that, comes the responsibility for her to pick those balls up for me. I detest the reminders of how the scale is tipping more every day.

A Favourite Spot…

This photo is of a favourite, and oft visited, spot in north Burlington in my shooting days. I found the property so captivating that I took a chance and left a message in the mailbox asking if the owners might consider allowing me to photograph more of their property in exchange for a print. They graciously and generously agreed (I was permitted to the very back of their extensive and gorgeous property), and was given the privilege of photographing the property for a number of years.

On my last foray into the country last year, I asked my friend to drive by this laneway so that I could take one last look. No matter the season, it’s always stunning!

Download available here - https://www.dropbox.com/s/4j6qs2lizu2guv3/laneway.jpg

Job Posting…

Shouldn’t the ability to make the world go away be a perk of being seriously ill?

Before I go further I need to mention that when I speak of the world, I’m not thinking of the family and friends whose company brings me great joy. My closest friend’s visit today was anything but an intrusion, in fact her timing was impeccable. Somehow the universe lined up one of my more challenging days alongside her visit.

The outside world has been sticking it to me with hot pokers this week, and today was brutal. I needed help to take away the sting, and luckily both my friend and Suzanna are masters at the task. And both have fortified me for what will undoubtedly be a tough week ahead. Sometimes you see it coming, sometimes you don’t. This next one has me square in its sight.

The entrepreneurial spirit in me thinks that I might be on to something. Someone for hire who can hold the outside world at bay for a few days, that’s a gift that Suzanna and I would truly appreciate right now.

There are times when I think that the pain of dealing with bureaucracy and red tape outweighs the physical pain my body delivers around the clock. It would be lovely to hand over the reins to someone else to deal with the bills, the insurance companies, the pharmacy and the numerous support agencies to allow me to get a break. Not that there aren’t some really terrific people to be encountered along the way, but at times the idea of having a few completely uninterrupted days with my daughter is overwhelmingly desirable.

While I’m on that thought, it would be a tremendous bonus if that person could also step in to provide the body for the nurses to check over. Surely it wouldn’t be so bad if the record shows that my blood pressure, heart rate, blood oxygen and temperature looked a little more consistent for just a few days.

There is no way to keep the outside world away for any length of time it seems. It reaches in, and I have to reach out. However, I may yet work on that job description. I can’t have been the first to wish for a bit of peace during a time of life in which almost everyone agrees it’s most deserved.