Tuesday, December 19, 2017

New/Which Direction

I've been thinking about where I want to go with my writing. I haven't written here in a long time because I've been so preoccupied taking care of someone else that I've neglected myself.

Now that I'm in my own safe place I'm waking up to the actual hell of the past 5 years. Dec. 23 2012 my life changed forever - and it was a huge effort to get out from under, stay alive and live.

A few weeks ago I was chatting with a friend who's been with me through my palliative etc. journey and I was in a whiny place, expressing sadness about losing the love of my life to mental illness. She immediately took me back to the phoenix that I am, that she sees me as and reminded me of my incredible journey. She actually said "I'd like to see you be a speaker, speak your journey, your resiliency, share your incredible spirit". I needed that kick because I had forgotten just how strong I am in caring for someone who's shit on me for the past 3 years due to her own illness that says people are evil. I feel so sad for people living with PTSD that believe everything the illness tells them. I know first hand. Had I listened to that/my mental-illness, I never would have taken the leap and trusted my medical team in the big city. I never would have turned it over because I would have continued to believe that "they're out to get me". I would not be here today. No questions.

Sadly she's still encompassed by fear/illness and I fell into it too. Case in point, last night I was at a social and the question "what do you do for fun" created so much anxiety in me. Fun? What is that? I've been in survival mode for years: first my own survival, then hers. Fighting death with almost every breath rarely gave me a chance to have fun.

We all have one precious life. Most of us don't go through the active process of dying and then getting a second chance. What did I do with that second chance: tried to prevent someone else from dying. I didn't succeed. In the process I lost myself again. What now stands before me is incredible opportunity to do anything I want and I'm overwhelmed.

I don't even know what fun means anymore.

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).
Boo.
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.