Thursday, December 22, 2016

Arizona, check!

Wow - I can't believe how much time has passed.
In 3 months I've done loads to things.
I went back to Vermont where some lovely friends live. We were going to zip line across Mt Mansfield but when we got to the top of the mountain (on the gondola) visibility was nill. It was like zipping through a cloud, which does sound cool, and I've love to do that one day but for my first Zip I wanted to be able to actually see beneath: all the way down!

At the end of October we went to Arizona. Spent only 10 days there but it was well worth it. It's such a huge state that we only planned to cover the north eastern quarter. Yes, I went to the Grand-Canyon. It's ok but I'm really glad I saw everything else I visited. The entire trip made it worth while. Had I gone just for the GC and home, I would have been disappointed. We also went to Antelope Canyon: both the outside on the water part and the inside, dry land part that was very cavernous. It was the wrong time of year to see that majestic sunbeam come down to hit the canyon floor. We had other spectacular views just the same. My pictures are 'other wordly.' Spend some time in Sedona where we visited numerous Vortex and I even wandered into a quilt shop. I have some nice southwestern cotton prints now. Lots of spending there. Actually the most extravagant part of the trip had to be the helicopter ride. Yes, I finally got to ride in one: over the Grand Canyon no less! There you go, another bucket list item checked off.
Many times during the trip I wandered off on my own. I guess I had more energy than I planned for (as my surgeon said a while back: plan for the worst, hope for the best). I wandered over to marble canyon where I happen to hike to Horseshoe bend. The hike was really short but in the desert heat, the sand and no shelter from the sun, even the warning signs at the parking lots were huge and reiterated "bring water", "do not attempt without water", "no rest spots" (Oh ya, forgot to mention it was at a 45 degree incline). 1.2 km is short and I can do that no problem here, but in those conditions it took me, and the people around me a while. In the end I did find shade: those little desert brush plants, the ones that are only 16" tall: well they cast a small shadow. Sure the shadow is smaller than the brush, but the sand is *not hot* and that's all that my butt really cared about!

Let's see, we also went over to lake Powell just across the boarder with Utah. Lovely land, that's where we cruised into the canyon. Cruise was packed and it was low-season. So glad we didn't show up in high season. Yikes.

Also hit Monument Valley on the Navajo Reservation. Actually most of the northern quarter is Navajo and Hopi land. So beautiful and rugged but also so much poverty and racism. When we were at John Wayne's point there was a Navajo guy selling access to his horse. Five bucks bought you a sit on his horse on the cliff's edge and your friend (or him) could take a picture of you from the distance. I couldn't resist. The money went directly to him and I have something to laugh at myself when laugh gets serious again (as it always does).

Anyway, I could go on and on, listing more bucket list adventures in that one grand trip but that would be beside the point of this entire blog.

Wednesday, September 14, 2016

another bucket-list item getting crossed off soon!

I just got the green-light from my doctor to travel to 7,000ft. I'm going to the Grand Canyon!
Not many people realize but northern Arizona is on a plateau. The average elevation is about 5,000 feet with high points in Flagstaff and Grand Canyon Village proper.

Went I tried this trip as an un-repaired person, the elevation made me sick, so though I was in the desert, I never got to the Canyon: so close yet so far.

Well, soon I'll be able to finish what I started. I just bought the tickets today! I'm so over-the-moon about this.

The doctor did give me a few conditions: no hiking, activities that require exertion and bring back photos. I can do that. This trip will be a lazy-girl's trip: a few days in Sedona: new-age capital of America, perfect place to get my spa-on. Road trip through Monument Valley, Helicopter ride in the Canyon, a tiny bit of hiking into Antelope Canyon (if my breathing is fine).

In the meantime, I've started my swimming lessons. I'm not cyanotic but I was still "blue" when I got out of the pool: cold. My private instructor seems like a nice guy. He's a paramedic so he gets the vocabulary ("I was cyanotic and I still take my sats" is not lost on him).  It's going to take a long time to get comfortable in water to learn. Not to worry, my trip to Hawaii isn't for a few years. My big bucket list item is swimming up to a waterfall in Hawaii after my full marathon.

Tomorrow I leave for my first Congenital Cardiac camp. I used to look forward to meeting new congenital patients, now I'm not sure how comfortable I'll be at this (adult) camp. It seems there may be a lack of understanding as to what boundaries are. We've already had discussion on FB about photos and all posts want them taken whereas I said "no thanks for me". I've been told to "loosen up". They don't get that I'm in forensics-ish and I try to guard my privacy. (I don't study the psychology of crime but I am a therapist to ex-cons.)  I don't even have my real name or location on this blog, why would I chance a client Googling me only to find a picture of me doing whatever shenanigans. Many of these people don't work so they don't get it. Hopefully that was one person's opinion.

Lots of things going on.
Amazing what stable health will give a person. Never take your health for granted: it's your freedom!

Monday, September 5, 2016

Is this what 'normal' is?

I'm not sure how interested I am in writing about living with congenital heart disease any more as I don't exactly match the premise of this whole blog.
I started it as an unprepared middle age girl and now I'm repaired. Granted it's not a full repair and there's work to come in the future but for now I'm living a life I didn't even know how to dream.

I may not be an athlete but I can walk 5km, I am learning to swim, I'm whitewater rafting (granted with a tour guide) and I'm not ever blue - ever.

Last weekend I went on a girl's road trip to a beautiful part of our province. On the hike there were several stair-cases that lead to caves. My friend was concerned as I was taking a breather. Yes, I still walk slowly - I'm middle aged after all and just now starting to be physical so this body has a long road ahead to build it strong enough to keep up with others. However, as I took that breather on the bench I looked up the stair case and gathered the strength and stamina to do it. I understand my friend's concern as she saw just how fragile I was in the hospital, just how blue I was. A dear friend by my side on every step of this journey. But I am a water ox, and get up and meet a challenge, I will. So I did it, I climbed the flights of stairs. Then I jumped the guard rail and explored the dark cave. I had such a good time. I fell, I scraped myself, I had a moment of panic in the dark, but I did it and I love that above all, I am challenging myself: not my physical limitations but my own fear and anxieties.

This weekend I did the same thing by jumping out of our raft. The tour guide took us to a calm part of the river and offered time for people to take in a swim. (It's scheduled in the package). I really wanted to, to push myself. I don't like being in water where I can't see the bottom, and I don't like being in natural water where I can see the bottom (sea weed, muck, etc.). See my conundrum. I'm complicated! I moved to the edge of the raft, turned outwards and jumped in. It was awesome until I did start panicking: the water wasn't as smooth as I could see. I started floating away from the raft so I wanted back in. Eventually I "swam" back and was yanked back up. Ma belle looked at me and said "I can't believe you just did that". She couldn't get over the shock of this side of myself.

Nothing is as bad, scary or hard as waking up in ICU, hooked up to a machine, not being able to speak or breath. I didn't go through all of that to continue to be a scaredy cat. The rafting was fun. The road trip was fun. The cave crawling was fun. I've had a fun summer.

Most of all, I've had fun forgetting about my heart. It's repaired but my left pulmonary atresia remains intact. That's for another time. Until then, I'm living.

Wednesday, July 20, 2016


On the recommendation of a friend, I started seeing a physiotherapist for what I thought would be muscle-strengthening after my whole ordeal of the past few years. What I found out was that the muscles aren't that weak but my nervous system is in need of great repair. I guess that would happen when you're body is carved out and made anew. Who knew nerves played such a great role in fitness/ mobility.
Anyway, we've started out with basic "nerve-flossing". I like the term, since I'm a proud flosser! Yup, this kid who grew up not being taught how to brush her teeth is a flosser and twice-weekly water-picker. I hate cavities, anything I can do to avoid them, and keep me heart-healthy. (So much connection between our oral health and heart health but most people disregard that.)

Saturday, June 18, 2016

Need to give back more

I know it's been a long while since I've written. I'm not being drawn to writing at the present time. I'm currently finishing specialized training in mindfulness-based psychotherapy and I have had to write a few papers for it - using big words. I tire from big words, keyboards and thinking. Decidedly the worst part of my job is writing case-notes. It seems I can have a great session and once I face the progress-note template I'm wondering what my client and I even discussed.

Anyway, what brings me to my blog today is heartfelt sadness. No, it's not about the shootings. Those keep happening and until our friends' to the south get their shit together with gun-control, it's not going to stop.

My sadness is about someone I don't even know personally but who is part of the congenital network I now belong to. Last month I saw her posts notifying us that the team (the same team I share in Toronto) will not be listing her for transplant. She is too sick. It saddened me but that was the extent of the impact it had on me. Today I saw celebratory pictures (birthday? happy breathing day?) in the hospital. She has obviously deteriorated since her last post. She is on high-flow oxygen, she's cyanotic and her skin is so white. She looks like a powdered doll with purple lips and eyes. I couldn't get this visual out of my mind while on the treadmill today. I feel so guilty that I haven't been using my new life as best as I could. I'm not creating big change in the world. I barely make an impact in the field I'm in. In fact, I've come to the "I'm done" point with present area of specialization. I'm adding to my skill-set to move into grief & loss (palliative), mindfulness & trauma (though I have those two specializations already).

As for my body, I am still amazed when I hop off the treadmill, measure my sats and I'm in the low 90s after a 20 minute walk (with bits of run time). I completed a 5k "race" a few weeks ago. I was really disappointed with my time. It was the best-worst. It was hot and humid and I was sick the weeks' previous so didn't get much training in. I really wanted to be that the point where I could walk 3 run 1. Not then. I'm sure I'll get there by fall. (Dr. Lucy wants me to tack the couch-to-5k app a bit slower than most). I was still very much impressed that it was my very first 5k without needing supplemental oxygen. After my ASD closure in April I haven't been on oxygen - not even sleeping. I am breathing better than before I was born. My muscles and body on the other hand are a different story. Being over 40 is really hitting me. My knees click and crackle when I walk and get worse when I try running. My hips snap in yoga. Ma belle tells me this is natural with age. This sucks. I never got a "fit-30s" so I'm pushing to see what I can do at 43. Forty-three and it's the first time in my life I'm "normal". That was a long wait (42-43 years) but well worth it.
I would do it all again.

PS - when we were in that +30 humid race, without a tank, I so enjoyed yelling "fuck you dr. chan" over and over again.
When an ass tells me it will never happen I'll prove them wrong. You see, even before my palliative-plunge he never said I could walk, hike or go to the Grand-Canyon. Fuck you dr. Chan: I'm going to the Canyon this fall. Oh, and I'm just so excited to attend a friend's wedding in Vermont next week. Last time I was up on Smuggler's Notch in 2012 my breathing with supplemental oxygen was strained, at just 2,000 feet. Now I don't need it (of course we're bringing it "just in case").

People take "normal" for granted. I hope not to as I get used to it.

Friday, April 8, 2016

ASD closure

Just got back from the big city again. I went for an ASD closure: it's a much smaller hole. My heart it now hole free!
It's so weird.
I just have Pulmonary hypertension left, and other things that may require a major surgery again in the future but for now, when I asked my cardiologist: can I travel? do you think I can ever (race)walk without supplement oxygen, her response "was: try it. You don't have any more holes."

This last cath was the easiest but most uncomfortable (barely any sedation whatsoever). I didn't ask for any additional as I was using my mindfulness to get through the pain and because I really wanted to watch the insertion (and gaze at all my other hardware in my chest).

Twenty years ago this simple closure would have required open heart surgery. I *love* advanced medicine. One day in, next day out. Two cuts, three days off work.

Blessed by the privilege of modern medicine and western healthcare.

Sunday, February 28, 2016

1 year anniversary, come & gone

My 1 year anniversary of "the big surgery" has come and gone.
I went to the spa and floated (in the salt-rich 'pool'). It was like being suspended in utero.
It was also overpriced.
But, I had to do it once in my life.

A year ago today, I was still in hospital, so in a sense, I've been sorta marking the entire month.
In just over a week I turn 43. I am missing a few years and I've been making up for it. Cramming in 2 years worth of professional upgrading and training in the past few months. I'm actually entering burnout/compassion fatigue. Doing, writing, researching, reading and living trauma work 6 out of 7 days a week including evenings is too much. I don't know how I've also maintained a bit of a social life in there for good measure, but I have.

Other areas of my life have suffered, but it's not like they haven't been suffering for a long while now. I'm pulling back, but not before I move in overdrive for the next few weeks. I refuse to be still working on training when the weather is nice. So, this weekend I stayed in, ploughed through some work and the gap in that aspect of training is closing.

It doesn't help that this time of year is professional renew time which requires an entire professional development plan of what I did, what I will do and current modalities of working. That will be next weekend.
The irony of all this is I finished the first phase of my Mindfulness training which was, in theory, supposed to help reduce the felt sense of stress in my life. It only contributes to it as the course was taken as a participant-observer. Reflections are due next week, research papers in a few other weeks...

I laugh/cry as I reflect on all the self-imposed work thinking about my main reason for not doing a PhD: all the studying involved. I'm doing it now anyway. Difference is this peters out eventually to a rather stable amount of professional development. Whereas now I'm "making up for lost time".

Sunday, January 3, 2016

Happy 2013! um, I mean 2016!

It's a new year... but it still hasn't even been a year since my reparative surgery. I'm flabbergasted daily by how my life has changed. The other day I was lifting a chair above my head at work, thinking to myself how I couldn't even do that 6 months ago. I am moved, awed and mesmerized by science, healing, our bodies and the entire process. I hope to never lose that feeling. I'm sure it will dissipate but surely I hope to continue to experience it weekly at least.
I think it's this lack awe for life and the magnitude of all the small miracles that happen to each of us that make up our day to day lives that makes people become entitled, complainers, and all round negative in their attitudes and appreciation (or lack thereof) for life.

On New Year's Eve I walked a labyrinth, something I used to do but couldn't while I was deathly ill. It was nice to return to who I am. It was also really nice to be walking the labyrinth in the church in which my first home group was located. (The church tore down it's common areas, sold the land off to a condo developer and kept a common room - I suppose in exchange, and that's where the labyrinth was located. Though my old home group has not moved back.)

It was a moving night: walking, thinking about every other time I've walked a labyrinth, and there have been many. Many indeed: from here to overseas on the original "Chartres" layout (in France). Over the evening I thought about how I thought life unfolds, goals, ways of being and kinda giggled at how none of it and all of it has come to fruition. I say all and none because the course of my life has been changed so much that none of the thoughts or desires I once had are there now. No one, least of all me, could have predicted such a wrench thrown into the way. I mean, yes I knew I was a congenital patient, and yes I knew that my time was limited but there isn't a "knowing" until it's experienced fully. And then turned back on itself. Who could have predicted I'd be on the other side of palliative, still writing, still talking, still walking and working and reading and knowing and living and loving - from a source so much deeper than thoughts and ideas but from the depth of the well of life. What stirs up in me cannot be described by words. The awe and understanding I have experienced and lived these past three years cannot be described in words, only a soul's quivering that blurts out excitement from time to time.

After my morning meeting yesterday I went to lunch with a member I don't really know. (That's the thing about recovery; there's a false sense of knowing because you journey with these people but you don't really know them). I met this person maybe 4 or 5 years ago and always loved what she had to say. She didn't talk often as she is so shy and quiet. I thought for a long time she didn't have time for me nor was I liked by her. (I'm learning a lot about my own assumptions this past year). She said something so moving that it brought tears to my eyes (she was teary-eyed herself when she said it). She told me that during the span of time when I was in the day long surgery, she prayed for me (as many folk did because there was a call-out for prayers and thoughts and energy etc on FB) she felt much closer to me despite not knowing me.

And I to her
and to all who were supporting me
spiritually, emotional, physically or even financially.

In the end, we CAN all be close to each other. It only takes those positive loving thoughts (metta) towards one another to feel that close. And therein lies the secret to harmony.

Walking that labyrinth on the eve of a new year, putting and end to 3 years, moving forward with an open heart.

Time is not linear. We all know that but don't really stop to experience it.
On New Years' Eve day at work a client asked me about my evening plans and I responded casually but privately adding how I'm looking forward to welcoming in 2013. Then I stopped, giggled a little, shook my head and smiled at him as he looked at me with questioning brows. Some clients know what happened, some don't. I have no shame and don't hide it but I am careful not to break my College's ethics regarding making it all about "me".
If dear reader you don't get the giggle, it's because it's *almost* as if 2013 (and beyond) never happened. After all, I wasn't out in the world and if the mark of living is living among the living, I wasn't part of it.

In waking up, I do not put pressure on myself for "losing" 2.75 years; I gained a lifetime of wisdom and connection.
My cup runneth over now.

Wishing you all a beautiful 2016 - love everyone, and I mean everyone.