Friday, May 12, 2017

one new thing on hold

Well look at that, I haven't written since the end on January. My how things change in a few short months.

We moved at work... that caused a lot of stress in April and now into May. The building is not accessible at all. I am having a very hard time with the stairs (I'll get to that shortly). There's now a law in this province that workplaces must meet certain accessibility standards by, oh, 2016. If I were to make a complaint they'd face almost 100K in fines and I'd likely lose my job (for other reasons of course).

Nonetheless, we've now completed 2 weeks at the new location and I am happy to have my own office again. The constant battle to find/switch offices for sessions was insane. There were times when all of us had sessions at the same time so I had to meet a client in their kitchen. Those days are gone. Ironically though my office still seems to be a gathering place. All I have to do is turn my away from my case-notes and there are two coworkers sitting around. Though I like the company, I have to work. It's called work after all.

So back to the health - the whole reason for the blog: living with CHD and PH. My Pulmonary Hypertension is acting up. A lot. Despite tripping my lasix, I am still experiencing edema. I am out of breath all the time and have a hard time with the stairs. Not 3 months ago was I on a ski hill. You see my theme for 2017 was to try one new physical thing per month.

January started off with the end of my level 1 swimming lessons. I counted it for 2017 even though I started in late 2016 because why not? In February it was Salsa/Batchata. In March it was a ski lesson and in April it was curling. Of the 3 things so far, I much preferred curling. May was supposed to be a 10km and June, the batting cages. I thought, when I felt better of course, that I could maybe join a rec softball team or something.

Also on my list: shooting, paragliding, zip-lining, hiking down Mt Mansfield (Vermont's highest peek). Sadly I'm not sure I'll be able to attempt those things. I'm going to see my specialist is June but I have a feeling that with PH, this is status quo. They are already considering new "designer drugs" (i.e. PH meds that cost thousands a month- no joke).
Eighteen months was better than nothing. For a little while I got to experience life as a 'normal' person. No limits, just go.

Wednesday, January 25, 2017

Happy 2017!
Over the holidays it seemed on social media anyway, that 2016 was a bad year for many folks. I beg to differ. It wasn't overly fantastic, but, any year where I'm alive, without supplemental oxygen and breathing easy is a good year!
Twenty sixteen was a "normal" year. I looked normal, I travelled, I worked, I worried about work, I worried about life, I lived.
Twenty-seventeen on the other-hand holds a lot of "new". My intentions going into 2017 include replacing almost everything in my life, minus my cats. By the end of the year I'll be driving a new vehicle, working at a new job, living in another place. Well it's not even the end of January and I already have new wheels. I couldn't afford much, a 2010 vehicle but I finally drive a small "SUV". I can strap a kayak on Him and go. I don't have to bend to far down to get into the vehicle and with this aging body, that's a welcome thing.

I've been applying more consistently to jobs including the government. I am almost overly qualified for the last position I applied for but I am missing the language. I applied anyway. This year is more about doing things anyway. If I flop, so what. If I don't, great!
As you've noticed I still haven't written anything about being a cardiac-kid. It's not front and centre anymore. There are things that come up. I do have a follow-up appointment in June. I had one in November and I can't recall if I wrote, but I do have a leak or two. My super-star team didn't seem that concerned so I hope it's just a common occurrence. I won't be running a marathon (ever) so I'll be  just fine.
I am supposed to be training for a 10 (walk) but have been slow to get physical. I'm at the gym only once (maybe twice) a week and the pool once a week. Not enough, I know. My swimming lessons are at a stand-still. I have not yet "graduated" level one so I'm practicing until I meet the requirements to register for level two in the spring. I suppose the leak and the cardiac issue still does affect my day to day life: I can't perform like a normal person. I don't have the stamina to swim the length of the pool. Then again five months ago I couldn't float, at all. The fact that I can swim 7 meters front stroke and 17 meters back stroke impresses me and I'm the only person I need to impress.

So back to the 10k. If I can complete that in May then I will be adding the 1/2 marathon to the 2017 list. A few acquaintances I met at Cardiac-camp this past summer will be doing the 1/2 in the fall (walking) and I'm welcome to join them (if I can start training in time). As for other desires: I'd love to go to Newfoundland this summer but I'm not sure I'll have the time or the money. I just dumped my travel money into wheels.

This blog was a fantastic project when congenital cardiac issues affected my day to day life. Though I'm not officially leaving it, I'm not sure how much more I can explore the topic of being a congenital-kid. I know the journey is not over. I cross my fingers there aren't other major surgeries in my path, but where I'm at now is stable and I really just want to remain in that moment. I worry enough at work that I don't want to be worrying about my health. And I don't, that much really. Some days it feels like the past 4 years never happened. I was working then and I'm working now. The first few months I returned it was easy: finding files I wrote, cases I worked on. Now it's simply day to day life. It does scare me a bit. I've lost that intensely spiritual connection to myself-life that was so strong during my palliative year. That year was about focusing on the end. Now I'm focusing on the now. Perhaps to a down fall that I haven't moved on sooner in work and living.

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.