What Next?

A few weeks ago I wrote about my hopes to be able to photograph a very special event this past weekend. The family booked me eighteen months ago, at that time I had no idea of the challenges that lay ahead.

I shared the details of my health situation with my client a few months ago, and insisted that they permit me to book another photographer given that my health was increasingly inconsistent. They'd hear nothing of it, and said that they were confident that I would be feeling great. I did book another photographer on retainer; the thought of letting them down was too uncomfortable.

We worked with my doctor to adjust my meds to give me the best chance of being able to fulfill my commitment, and I'm very happy to report that it worked! I felt in top form last Saturday, and for almost nine hours/3000 shots later - I documented a very special day in this special family's life. I'm truly grateful!

However, I was somewhat surprised to feel quite down the next day. For almost a year I've been focused on being okay for December 12th, discussing it frequently with my doctor (who fully supported the med adjustments), had friends and family rooting for me. But now it was over, and I'm feeling a bit lost. What do I work towards now?

There are the milestones such as my daughter's graduation from high school, our five year wedding anniversary and more- but I need something else that focuses on a personal accomplishment. Not too far off, but further away than the next few months (the rest of my prednisone taper has to happen first. From my experience of the last few months I know that this could be a rough ride, I've been so happy to stop the taper for a few weeks to feel somewhat normal for a bit).

It definitely won't be photographing an event - I can't go through that stress again of praying to be well enough for a date that can't be rescheduled if I'm ill.

This is going to take some thought. I'm thinking, and I'll let you know what I come up with.

Strange Dreams Indeed...

I'm famous for my dreams - outright wacky most of the time! A few nights ago I was watching an episode of "Nova" which addressed some theories as to why we dream, and it made me think about how my dreams have unfolded and changed over the last year. I could see a connection as to how we at night subconsciously address issues that we're grappling with during our waking hours.

One pattern particularly intrigued me and I'm not sure how it fits in - feel free to jump in with your own theory!

When I was first diagnosed with the tumour in my leg, I dreamed often about my leg falling off. Not at all unexpected (and rather unoriginal, don't you think?)

However when I was diagnosed with Erdheim Chester Disease in February every dream (that I remember having) was one that I'd had before in my life. Months of re-runs! Even repeating dreams that I'd had in my childhood and don't believe that I'd thought of since. It was a journey into my past every single night, some pleasant recollections and a few nightmares too. Weird, eh?

Then I started on prednisone (steroids) and I don't think that I had a single dream for almost three months. Steroids can make you pretty hyper and sleepless, I was lucky to get three or four hours a night. It's possible that I didn't even reach the REM dream stage during those very short and restless nights.

Now that my dosage of steroids is considerably lower I'm sleeping normally again on most nights and my dreams have returned. But not one re-run in the bunch! They're all new, all weird and wacky - back to my usual state of nocturnal wanderings of the mind. Most nights I can make a connection to my illness; I try so hard to put it out of my mind during the day but it manages to bite me at night.

But I can't help thinking about that "re-run" stage and wonder what the significance might be. Any amateur dream analysts out there?

Trying to crawl back

I haven't posted here in awhile. I wish I could say it's because I've been feeling great, "out and about" (my Canadian is showing!) and living my life.

It's been tough, and when things get tough I get quiet. When I was in the throes of labour delivering my daughter sixteen years ago, not a peep out of me. Other women delivering that night could be hear yelling & screaming (not to mention cursing!) down the hallway but I wasn't making a sound. Of course it hurt like nothing yet had in my life, nor since - but the most I could muster was a quick "yup" and "nope" was asked questions by the nurses and doctors. Just the way I operate, like a wounded animal I just want to crawl away when I'm in pain or ill.

The prednisone taper hasn't been going well, I ended up jumping back up on my dosage after a disastrous week. I shouldn't, but I consider it a personal failure when I can't cope with the side effects of this drug. It's become a battle of me against the steroids and I'm determined to win (defined by successfully tapering off this stuff).

I'll keep at this, but I've decided not to taper again for another three or four weeks. I was booked over eighteen months ago to photograph a milestone event for a very dear client in mid December, and I won't let my illness get in the way. Mind you, I'm not ignorant to the fact that ECD has a mind of its own and I've retained a back-up photographer just in case illness wins on that day. But I've been praying every day that I'll be given a twenty-four hour respite to the worst of the symptoms so that I can capture on film the abounding love that this family shares.

Please keep your fingers crossed for me, I need so badly to do this. I'm so very tired of letting family and friends down this last year when I can't follow through with plans because I'm not doing well. It will be the last family event that I photograph, this is tough to accept. Going forward I will only be booking work if the client understands that I may need to reschedule and unfortunately that doesn't work with sessions that must take place on a particular date.

On the hospital front - my doctor was featured in an article in the Globe & Mail this past weekend. I'm one lucky gal to be his patient. And he understands and supports my desire to shoot this last "biggie". Together (with my family) we pick my battles.

Doing Laundry - My Big Accomplishment

A few weeks back I had a great week. I was able to photograph several families, and got quite a bit of personal shooting in too - during the best week for fall colours no less!

Then I crashed. Hate, hate, hate prednisone. Did I say how much I hate it? I'm in that phase where my adrenal glands are supposed to kick in and work on their own again to deliver cortisol as required, but they don't seem to want to do that. I'm not a lazy person, but apparently my adrenal system doesn't know that.

I've been grounded. Even taking a shower seems like a monumental task on most days, and my proudest moment has been mustering enough energy to do a few loads of laundry. Although the steroids didn't seem to affect my moods negatively in the first few months, I feel overwhelmed by sadness on some days. This is so very hard on my family and I feel terrible for putting them through all this. This isn't me, and I'm wondering where I've gone.

I debate this morning whether to call my doctor. I'm pretty sure that he'd tell me to up my dosage and try tapering again in another week or so - but, I'm really determined to get off this poison as soon as possible and want to try sticking it out for a few more days.

So, forgive me if I'm being a bit cranky and not replying to emails quickly. I'm feeling sorry for myself and finding it difficult to be happy about anything right now. I'm going to blame the steroids because despite everything we're going through I know there's a happy person underneath all this - I'm just waiting somewhat impatiently for her to emerge again.

Nose to Nose

After dropping my daughter and her friend off at school this morning, I took off on one of my photo field trips. Often without a destination in mind, I drive until I see a turnoff that looks appealing and keep making turns until I decide that it's time to head towards home again. Thank goodness I have a great sense of direction! A few years back I went on one of my field trips and ended up almost six hours away from home - but these days I stay much closer when I do get out with my camera.

The light was soft and gorgeous, wrapping around whatever subjects I stopped to photograph. After shooting for several hours I started to drive towards home when I passed a farm with numerous horses in the paddock. I've passed this farm dozens of times, but this time the light was right and I had to stop.

Often when I approach horses with my camera they glance towards me indifferently, but this group seemed to be very interested what I was up to. All trotted up to the fence, sniffed at my outstretched a hand and decided I was worthy of giving them a rub on their snouts (do horses have snouts, noses? Not sure of the correct name!)

They may have enjoyed having a bit of a "snout massage" but I think I got more out of it than they did. Interacting with these beautiful creatures relaxed me like nothing else has for awhile. It became a bit of a game as I tried to capture some images, as soon as I'd get focused on one horse, another would run into the field of vision - ruining the shot - but I found myself laughing away and moving to a new spot. Only to have the same thing happen again. They seemed to enjoy my presence - and it made me feel like I was wanted there.

I did manage to get a few decent shots, but what I took with me back to the car was such a fantastic sense of well-being that continues to warm my heart hours later.

Consumed or Oblivious

I had another good day today physically which allowed me to go on a drive searching for photo opportunities. The fall colours are coming in nicely, the roads are quiet during the week which makes pulling over to the side to take photos much easier.

These drives usually provide me with an opportunity to forget about my health issues for a few hours, or rarely - as it was today - take my brain to places I don't like to visit. Not five minutes before finding this gaggle of geese, I came across at least half a dozen turkey vultures attacking what was left of a raccoon on the side of the road. My mind was going to all the wrong places today from the get-go, and seeing the vultures ravage the carcass caused me to think about how my illness lays little mercy upon me these days.

Then the geese. I've passed this farm many times and often hear the geese honking but this was the first time that they'd put themselves in view. I thought about how much I'd like to fly away and leave my illness behind, if even just for a day for a most welcome respite. But it's impossible to escape. Taking meds four times a day sets the tone. Have to eat with this pill, don't eat with that one - don't even think of drinking any alcohol while on the other...

I think what set me off today was forgetting my morning pills, the most important ones not to forget. I was an hour late - I had actually forgotten for several hours after waking today that I was ill and I was simultaneously delighted at having put it out of my mind and at the same time scared. My pharmacist had been so specific about not getting off track with my morning doses. No harm done, it was only an hour off schedule - but what if I'd gone on my long drive today without having remembered? What if I'd had a reaction when I was on one of those lonely country roads?

It's sometimes just all too much, too complicated, and it at times leaves me resentful. But not so resentful that I'd subject you to a photo of the turkey vultures at their feast. The rear ends of geese are better, don't you think?

Where I'll be this week....

This laneway is one of my favourite spots to photograph. I've visited it dozens of times since moving to Burlington, in every season, in every type of weather. This image was captured yesterday, a cool autumn day that reddened my cheeks and made me pull my zipper up tight around my neck.

Never does it fail to inspire me, however I must say that fall is my favourite time to photograph here. The leaves have started to turn colour, and some are already dropping. From past years I know that the leaves will be a brilliant orange & yellow within the week.

My prednisone taper continues to give me plenty of rough days, and on these days I don't drive - much less photograph. But for this laneway, I will adjust my med schedule so I don't miss the peak brilliance to come. I know that my doctor approves. He's encouraging me to make the most of my time; telling me to do what I love. And this I love.