It took me a week to find this funny...

In my last post I mentioned that I'd had a bit of trouble with my first day on Prednisone, requiring some quick blood tests to try to explain a fever that cropped up. What I didn't tell you is what a baby I was about one of the tests!

In just one more of the weird coincidences that keep cropping up of late, it turned out that the doctor staffing my local walk-in clinic that evening last week is the wife of my regular cardiologist (sad to say, I have several looking after various cardiac complications).

As required, I gave her a bit of background on my medical status and she mentioned that her husband would find my diagnosis intriguing. We put a few pieces together to realize that not only was I her husband's patient, I'd seen him just a few days before going on the Prednisone. She called him to get his slant on what should be done next - my luck in getting amazing medical care continues!

Back to my test. Along with standard bloodtests, the doctor said I needed to have a throat swab done to check for infection. I paled, backed up, and quickly blurted out that I'd pass on that one - thank you very much! With gentle persistence and an explanation of why this test was important (and assurance that she - the clinic doctor - was really good at doing this test) I finally allowed her to quickly swab - with my husband holding my hand (and a tear in my eye).

If you know me well, you'd probably find this as surprising as my husband did at the time. I'm proud to say that I can be one brave soul. Some pretty tough issues have tested me in this lifetime, and I seem to be able to handle them with a smile on my face. But a silly little throat swab made me run!

Thanks for not making me feel stupid for my fear Dr. S, and thanks to my sweet husband for holding my hand. For a few minutes I felt like a terrified, wide-eyed three year old. Goodness, I think most three year olds would have handled the test much better! Yes, I'm as quirky as all that...

Trying not to eat my cereal bar wrapper...

It's day 4 on Prednisone, overall not so bad so far!

I had a bit of a rough start with a fever on the first night, my doc had me go for blood tests at the local lab just to make sure all is ok (Prednisone reduces resistance to infection, any fevers should be investigated asap). All was in order, it must have been just one of those things, in fact the fever has returned a few times now but I don't feel ill with any other symptoms.

Minor side effects have included a touch of nausea and stomach pain, a bit of dizziness, and lack of sleep (last night was less than 3 hours, and not much better on the previous nights). Oh, and the infamous Prednisone mood swings kicked in last night for the first time, bless my family for not slapping me silly for being so weepy and miserable for a few hours there! They know exactly when I need a joke and a hug to feel a bit better.

And now for the good stuff - unbelievable energy (my family hasn't seen me move this fast since pain from the bone tumour started up last summer), No pain in either my chest (from the pericarditis) or in my leg (from the tumour), and I've actually dropped a bit of the weight that I'd put on while taking other meds over the last few months. Normally Prednisone can pack the weight on quickly. I'm prepared that this will likely still happen but for now I don't mind the lower number on the scale!

The hardest part is the intense hunger that kicks in just after lunch and sticks with me until I go to bed. A hunger like I've never experienced before. Really. Don't leave any food laying about, 'cause if you were saving it - it's history if I catch sight of it. Closed kitchen cupboards are my friend right now, in fact locks might not be a bad idea. I'm trying very hard though to keep to normal portions and calorie intake, and hopefully I'll be able to keep the expected weight gain from getting out of control.

Off now to put this energy to good use, anyone need their garage cleaned out? Oops, I guess I should start with our own...

Started on Prednisone

It's been an eventful week. I can do without eventful weeks like this!

In an attempt to clear up this persistent pericarditis that I've been troubled with, my cardiologist had me double up on a med called Colchicine this past weekend. Not quite the expected outcome, it actually made the symptoms of pericarditis quite a bit worse (chest pain, difficulty breathing, exhaustion, dizziness, dry cough - I'm adding a bit more medical detail in this post because dear and thoughtful friends let me know that they were looking for more of an update on my physical status!)

A quick call to my diagnostician in the city (have you seen the TV show "House"? His team works in a similar fashion, minus the cranky SOB character that Hugh Laurie plays) got me into see the team the next day (yesterday). I'll go further, not only are they minus "Dr. House" they're an amazing team of caring and dedicated medical professionals who have made me feel like nothing is more important to them than treating my illness as effectively as possible while taking my comfort and concerns into consideration at all times. I'm truly blessed to be their patient.

It was agreed that it was finally time to try Prednisone (a corticosteroid used as a last resort for pericarditis). I'd been dreading this step. I've heard all kinds of nightmares about this drug (weight gain due to water retention, huge appetite leading to additional pounds piling on, moonface, crankiness,restlessness, bone density loss, insomnia etc.). My medical team had me on all kinds of other drugs prior to this hoping to avoid Prednisone, but it appears that if I want rid of this nuisance, it has to be!

I took my first dose this morning, and I'll admit that I raised a bit of a fuss about it. A few tears as I told me husband "see you on the other side!" meaning nothing more dramatic than hopefully my moods wouldn't change too much and that after the course of treatment I would feel like myself again. Minus the pericarditis of course.

It's been about six hours. Some waves of nausea, a period of fairly intense restlessness (maybe not such a bad thing, I went on a tidying frenzy), and a BIG appetite that I'm trying hard to ignore. Overall not too bad. I'll be cautiously optimistic, I'm aware that side effects can escalate as treatment continues.

Feel free to share your experience with prednisone if you or a loved one has been on it. Especially if you have any suggestions for dealing with the side effects. GRRRRRHHHHH! (Just kidding, I haven't been feeling irritable. Yet. Because if that happens, my family might be seeking additional meds that will put me to sleep for a few weeks. :-)

Peering out the window...

As a landscape photographer, I spend a lot of time outdoors. At least I did before I got sick. And now I spend most of my time indoors because I'm either recovering from a surgery, trying to deal with side effects from various meds that I'm on or just too darned tired to get myself out the door.

And this hurts. Warm weather has finally arrived in my corner of the world and I'm sidelined most days. I'm aching to be outside. Taking walks with my family, tending to the garden (not my favourite job, but the being outside part suits me just fine!) and photographing. I used to think nothing of hauling myself out of bed in the wee hours to arrive at my destination before the sun rose just to get that perfect light for my photograph (and it was usually darned cold too, but totally worth it)!

I know this is temporary (no more surgeries scheduled for now, and I'm confident that the next round of meds will finally get rid of a nasty case of pericarditis that's been taunting me) but I can't help think about when I do get outside I need to make every moment count. I'm hoping it's still quite a few, but I just don't know how many summers are left for me to appreciate.

It's ironic that as a child I'd much rather have curled up in my room with a good book; getting outdoors simply didn't interest me. Somewhere along the line I started to see just how beautiful this world is in its colours, shapes and textures and felt the pull to capture it all with my camera. And now I just can't get enough.

Ok, I'll admit this has kinda been a "feel sorry for myself" day. They don't happen often, but it happened today. I'm feeling worn out, and upset that I'm wasting time doing much of nothing right now.

I leave you with a photograph taken a few years ago. I'll be back out there again soon. Promise.

Who's looking back at me in the mirror?

Admit it. We've all thought about it. What would I do if I were diagnosed with a serious illness and heard that I would have a shorter time on earth than generally anticipated? Travel to places I've always wanted to visit? Try daring sports and activities (sky diving, anyone?) Meet a person whom I really admire?

There's no right answer of course, and everyone will have their own "bucket list". Maybe you'd be physically limited in some way, maybe finances would be an issue, and maybe you'd just change your mind if this really happened to you (and I pray that you never find yourself in this situation).

Straight up - yes, I hate being in the position where I have to think about this.

It was an acid test. Was I truly as happy as I thought I was before my diagnosis? Did I have regrets, important tasks undone, a life not truly lived? I found myself overjoyed (after having had time to digest my diagnosis, that's a post for another day) to find that my bucket list is truly very short. My life was wonderful before the diagnosis, and will continue to be great in many ways. It's not a charmed life in the traditional sense, we struggle with many of the issues that families deal with. But we're a family, and I know that through the best and worst of the road ahead we'll be getting through this together. For that I'm grateful beyond words.

I look in the mirror, and although I sometimes have a hard time taking in what I see happening to my body in the purely physical sense - in my eyes I see who I am. That part hasn't changed, and maybe I see that more clearly than ever.

As for that bucket list? More on that later. Trust me, it's short (but sweet!) What's on your list?

Anonymously Yours....

I've been asked by a few readers of this blog (and thank you for the great feedback after my first entry!) why I've chosen not to share either my name or the medical condition that I'm dealing with.

First my name - it's primarily economics! I'm self-employed as a photographer and I'm doing my level best to work as much as I can given whatever my current state of health might be.

I have to appreciate that a potential client coming upon this blog by Googling my name may hesitate to book me if they have any doubt about my ability to follow through on the job. Without knowing me personally they wouldn't know just how passionate I am about my work, how dedicated I am to delivering a great customer experience and how determined I am to keep clicking the shutter!

As for my medical condition (I say "my", as if I own it! I'd gladly sell it to anyone who could dispose of it safely with no harm to others....) again it's that beastly Google issue. You can scare yourself silly looking up any medical condition on the net, and my experience will be different that anyone else's. If someone happens to visit the support group for this particular affliction they will have an opportunity to visit this blog via a link and can draw their own conclusions. For now I feel strongly about not having this blog show up when someone Googles the name of the illess.

On the medical side of things... tomorrow I get the preliminary results of a biopsy taken from my back two weeks ago. Stitches are out and the incision is healing well. Still dealing with a rather persistent case of pericarditis (an inflammation of the lining of the heart) and will probably need to switch to stronger meds very soon. I detest taking meds of any sort, this is a rather big obstacle for me to overcome!

Stitches come out tomorrow

Really now, why couldn't I have appreciated my body more when it was young, healthy and looked pretty good in a bikini (except that I'd never have been caught dead in one at the time!)?

Tomorrow I have an appointment to have stitches taken out, having been deftly sewn in by a surgeon 10 days ago when I had another biopsy done. This time on my back, it was a whole lot easier to recover this time around! The last biopsy (February) was on my femur and had me bound to my bed for the better part of twelve weeks to avoid fracturing my leg.

I look at myself in the mirror in the morning as I dress, and most days don't notice the four scars that can be found on my chest(2), leg and back. Not too mention the half dozen or so from various mishaps growing up! I try to see that for 44 yrs, I'm looking pretty good!


Despite that I'd make a decent gameboard for tic-tac-toe by drawing in just a few more lines at my surgery sites, maybe this summer I'll find the courage to wear a bikini after all!