Happy new year all!
I've been distant for many reasons.
First, so much was happening in my personal life that I couldn't keep up. I moved from my 3-story house to a bungalow. I got remarried. My spouse had major surgery. Now work is challenging again.
But through all that the thing that probably kept me from writing was a connection to someone else in the US who told me about stem-cell research. Thing is, this contact more like 'sold' stem cell to me. The language used in the emails was very "sales-pitchy" in that used-car-salesman sense. So I did my own research, contacted my cardiologist and the end result is that he just doesn't want to see me waste my money. Yes, it would cost me MY money. That's what happens when health care becomes a business. Either way, he said that the cost of those "treatments" would not necessarily outweigh the long term potential problems. Sure one will feel great for a little while but then crash and burn even fast.
So I stopped writing for a bit. I do appreciate links, information and access to treatments I may not know about but I can't stand snake-charmers. I have a moral value that's very much Canadian (or socially democratic): health-care is a right-to-life and is not supposed to be a business. It's immoral to sell hope. (Here I am not referring to "right-to-life" in the religious right sense.)
There you have it, my first post of 2012.
Oh, by the way, I had an annual respirologist visit last week (to renue funding for my O2) and my numbers seem to have gotten a little better. Now, the respiratory therapist was new (to me) so had no history of my numbers, but I recall what my room-air sats are and my O2-air sat's are and it seems I've improved. La femme francaise has also noticed a difference this winter: my hands and digits are not as purple (mind you my acupuncturist has been working on some circulation points directly affecting hands/feet). I don't feel as out of breath. My vision has also improved (hence my glasses Rx will be changing again).
Not sure how heart-failure can get better but, this winter (so far, kinahore) seems to be better than last.
Tuesday, January 17, 2012
Friday, November 11, 2011
11-11-11
It's been a while, a long while I know, since I've posted.
I've been taking time thinking and reflecting about writing. A lot has happened since then (Oct. 7th) nothing really to do with Truncus Arterios or heart disease in general. So it's because of that that I'm thinking about how my writing has shifted from the experience of living with a living disability to general musings.
Today is "remembrance day" and so I'm trying to remember why I first started this blog. It's also armistice day.
I will write more, as I figure out why I continue to write. I will let my readers know that in this time, I have successfully been able to clean out all air in my new bungalow, I got married again and an acquaintance died. That's just what I can remember.
May today, 11-11-11, be a memorable day for you whatever you choose to do with it.
I've been taking time thinking and reflecting about writing. A lot has happened since then (Oct. 7th) nothing really to do with Truncus Arterios or heart disease in general. So it's because of that that I'm thinking about how my writing has shifted from the experience of living with a living disability to general musings.
Today is "remembrance day" and so I'm trying to remember why I first started this blog. It's also armistice day.
I will write more, as I figure out why I continue to write. I will let my readers know that in this time, I have successfully been able to clean out all air in my new bungalow, I got married again and an acquaintance died. That's just what I can remember.
May today, 11-11-11, be a memorable day for you whatever you choose to do with it.
Friday, October 7, 2011
spinning 'round and 'round we go
It seems that my life keeps getting busier as I look to trim down and simplify. I move to a bungalow to downsize. I cut my hours at work so as to not burn out and take care of my precious health. And yet the world keeps spinning... my world keeps spinning.
La femme francaise had surgery 2 weeks ago. A major yet routine surgery. As I spent time in the hospital with her I became amazed at how scheduled "normal" healthy people's recovery is supposed to be: day 1 you get ice chips; day 2 you get clear broth, sit up, get out of bed; day 3 you use the washroom alone; day 4 you're out the door. Well sometimes when individualized care is overlooked (in favour of generic results-driven care), things go wrong. Day 2 when they insisted she get up, something popped. She bled. By day 4 she was still feeling that something was wrong but they sent her home. Allopathic health-care: don't listen to 'the body', read the text-book.
Five days later she was still feeling that something was off so went back to the hospital (I'm sorry, but military hospitals suck). They looked at her, said everything was OK and sent her home.
Next day we end up back in the ER - this time to my chosen hospital with exactly what was wrong since her surgery. We spent the weekend there waiting for the blood clots to get drained and her repackaged up. She is now at home, doing well but she has an open wound. This happened to me 12 years ago. This has also extended her healing time by another few months. This could have been avoided if they initial doctors and nurses and the 3rd rate hospital listened to her. Now the woman who would shovel my walk-way last winter, lift things for me and carry the physical aspect of our relationship is now dependent on me to do all that, and more. I wish I could. We are quite the pair when we shop: her in the scooter and me with her cane trying to keep up. It's quite the thing to figure out how to carry everything (including cat litter) into the house when I'm the one doing it. I pulled my back helping her get out of bed the first night she returned home. I'm not at all resentful - I wish I could do more, but I can't. She is also going through the journey of losing ability... the one I face everyday on a slower level. After her first time using a scooter in the store she remarked at how rude people were and how invisible she felt. She now understands when some days I say that I have less energy to negotiate with other peoples' reactions than I do to take a scooter to 'ease' shopping. I'm sad for her she's going through a very helpless period - from being a soldier that can take on anything, being my hero, to not being able to take her own shower without help. I am not sad about the realizations she's having about the positions I've been in and my feelings about them. It's her opportunity to walk a kilometer in my shoes. At least hers has an end-date. She will eventually be able to lift in the spring, she will eventually be able to shovel, etc. She's also learning the lessons I've been facing most recently about "asking for help". I've used one friend's line "what makes you so special as to not ask for help".
So all this time spent caring for her is magnified by the fact that we just moved: furniture still needs placing, things still need to get done. But wait, there's more: we're getting married in 2 weeks. For a simple small gathering it's become filled with more drama than I've ever had hoped for. My mother decided she is too busy (with her own addiction) to come, my sister has resorted to being her lost self and has managed to throw a few jabs in before I un-invited her. I do not want any bad behaviour on my wedding day - and la femme's first and (hopefully) only wedding. I am having enough of a time trying to keep it together for a fallen soldier, I am not above un-inviting unsupportive people be it family or otherwise. I'm too old and this couple is not well enough to deal with other peoples' baggage.
I feel like I've become the queen of asking for help - to the point that I'm feeling twinges of guilt... just when someone flaked out on me in regards to the dresses (I still have no idea what I'm wearing) 2 beautiful old friends stepped in with spreadsheet in hand and took control. If people think I'm a control-freak, they don't know la femme. When I trust someone, I give up control. Gratefully so. My day will be filled with weird things: we're going to wear our black spit-shine combat boots under whatever white dresses we find, to paper plates at lunch or saying I do in the snow (no rain/snow location). It could be the coldest day on record for that day (and yes, I did look at the historical weather readings) and nothing else will matter except that my nouille says "I do" to her little nounoun.
La femme francaise had surgery 2 weeks ago. A major yet routine surgery. As I spent time in the hospital with her I became amazed at how scheduled "normal" healthy people's recovery is supposed to be: day 1 you get ice chips; day 2 you get clear broth, sit up, get out of bed; day 3 you use the washroom alone; day 4 you're out the door. Well sometimes when individualized care is overlooked (in favour of generic results-driven care), things go wrong. Day 2 when they insisted she get up, something popped. She bled. By day 4 she was still feeling that something was wrong but they sent her home. Allopathic health-care: don't listen to 'the body', read the text-book.
Five days later she was still feeling that something was off so went back to the hospital (I'm sorry, but military hospitals suck). They looked at her, said everything was OK and sent her home.
Next day we end up back in the ER - this time to my chosen hospital with exactly what was wrong since her surgery. We spent the weekend there waiting for the blood clots to get drained and her repackaged up. She is now at home, doing well but she has an open wound. This happened to me 12 years ago. This has also extended her healing time by another few months. This could have been avoided if they initial doctors and nurses and the 3rd rate hospital listened to her. Now the woman who would shovel my walk-way last winter, lift things for me and carry the physical aspect of our relationship is now dependent on me to do all that, and more. I wish I could. We are quite the pair when we shop: her in the scooter and me with her cane trying to keep up. It's quite the thing to figure out how to carry everything (including cat litter) into the house when I'm the one doing it. I pulled my back helping her get out of bed the first night she returned home. I'm not at all resentful - I wish I could do more, but I can't. She is also going through the journey of losing ability... the one I face everyday on a slower level. After her first time using a scooter in the store she remarked at how rude people were and how invisible she felt. She now understands when some days I say that I have less energy to negotiate with other peoples' reactions than I do to take a scooter to 'ease' shopping. I'm sad for her she's going through a very helpless period - from being a soldier that can take on anything, being my hero, to not being able to take her own shower without help. I am not sad about the realizations she's having about the positions I've been in and my feelings about them. It's her opportunity to walk a kilometer in my shoes. At least hers has an end-date. She will eventually be able to lift in the spring, she will eventually be able to shovel, etc. She's also learning the lessons I've been facing most recently about "asking for help". I've used one friend's line "what makes you so special as to not ask for help".
So all this time spent caring for her is magnified by the fact that we just moved: furniture still needs placing, things still need to get done. But wait, there's more: we're getting married in 2 weeks. For a simple small gathering it's become filled with more drama than I've ever had hoped for. My mother decided she is too busy (with her own addiction) to come, my sister has resorted to being her lost self and has managed to throw a few jabs in before I un-invited her. I do not want any bad behaviour on my wedding day - and la femme's first and (hopefully) only wedding. I am having enough of a time trying to keep it together for a fallen soldier, I am not above un-inviting unsupportive people be it family or otherwise. I'm too old and this couple is not well enough to deal with other peoples' baggage.
I feel like I've become the queen of asking for help - to the point that I'm feeling twinges of guilt... just when someone flaked out on me in regards to the dresses (I still have no idea what I'm wearing) 2 beautiful old friends stepped in with spreadsheet in hand and took control. If people think I'm a control-freak, they don't know la femme. When I trust someone, I give up control. Gratefully so. My day will be filled with weird things: we're going to wear our black spit-shine combat boots under whatever white dresses we find, to paper plates at lunch or saying I do in the snow (no rain/snow location). It could be the coldest day on record for that day (and yes, I did look at the historical weather readings) and nothing else will matter except that my nouille says "I do" to her little nounoun.
Monday, September 26, 2011
Friday, September 16, 2011
shifts
I moved.
I am still moving around.
I left the "manor" and have been officially living at the "ranch"since the 10th. Wow, only 6 days there. La femme francaise is completely unpacked because, she's a self-described minimalist. I on the other hand, have dozens of boxes needing shelving. I read, I have hobbies and am creative. And all those supplies take s-p-a-c-e.
The house is virtually smoke-free now. We've spent thousands of dollars trying to get the smoke out - for my health of course. Any remaining whiffs of smoke are eaten up by our super-air-purifier.
I have been super tired the past 4 weeks. I'm only now realizing how run-ragged my lifestyle has been. My own therapist (whom I haven't had time for in a month) said last night (when I finally resurface) that she'd be pooped if she was doing all that I did, and she's healthy. So I've not only made decisions - finally- but I've actually acted on them.
I gave my resignation on to the college where I've been teaching about how creativity helps in healing. That's been MY course for the past 9 years. And now I've let it go... that was hard, but liberating. I am no longer 'the' it girl for creativity and recovery. Oh well.
My health is already thanking me. Maybe I can give myself more time.
So the next step... I talked to all the appropriate people (HR) about cutting my hours at my full-time job. I'm not yet willing to move to part-time, but I have asked for a 4 day week. Thirty-two hours is about all I can handle. I want energy to enjoy whatever time I have left. I still have a dedication to my work. In fact, I'm gladly attending more training next month. I just want to be able to do it well and breath easier.
Human resources had no problem with it, but said it's really my manager I need to speak with since she knows the work-load. HR also said that my benefits will stay the same. This in itself is a huge huge relief. My pulmonary hypertension drugs cost just too much. With Dr. cardio man wanting to look into heart meds in Nov. it would be scary (heart meds are double my lung meds!!). Honestly I was fearful approaching my manager. She is one of the those super-woman kind of women. She can do it all, and all so very well. Here I am telling her I can't do it all. She did say that there'd be come juggling to do but that she is glad I came to that conclusion. She said I have very high standards for myself and usually keep working at those standards. I told her it was hard for me to ask, that it required admitting that I couldn't do 100% and had to drop down to 80%. That's when she laughed and added that I've been giving 120%. Hm. It was nice to here that. I know I give a lot of myself, but always seem to have this image of me seeming like a slacker to everyone else (because of my obvious limitations). I really thought people (ok, co-workers) thought I wasn't pulling my share, or even, lazy. Not the case, not at all.
So that's my newest action.
I'm really proud of myself to step down to 80%.
Thursday, August 25, 2011
Counsellor a physical job?
I'm not sure how my job has become so physically taxing. I listen to people for a living. I facilitate groups, which in and of itself is not physically taxing. It can be emotionally draining. Peoples' process can get deep, heavy and serious. And that itself is tiring. It stretches the soul.
This past week we've taken our guys to a lake/camp. I didn't even drive there. I got out of the daily drive for my shift by coming clean with not being able to drive on major highways without O2. I just wouldn't have enough O2 for the drive there and back on my little refill tanks. So, I went with my boss for the day shift - which meant I needed to not "sit around". Shit, even walking slowly outside for more than 15 minutes is something I can't do. So when did physical stamina become part of the job description?
Last month I applied to an agency closer to me - one that's also unionized and funded in part by some government agency. I did not even get a call-back. That was odd.
I am not sure what I'm going to do with this work - I can't just quit working altogether since we now have an even bigger mortgage than before (with this new bungalow). Yes, la femme can carry it on her own, but I'm not like that. I've been the type of person to have a few ongoing contracts, most of the time. Besides, we have a lot of expenses just with this new house. We're the type of people that don't like debt. I've payed my car mostly upfront. (These modern-day "don't pay a cent..." is unwise).
I'm exhausted. So much so that I'm seriously thinking of walking away from my college teaching (also done on the side). If I walk away this semester, just to take a break, they will never call me back. (No one else teaches what I teach, so it would really screw them). I know how they work there. I'm not sure I'm ready to cut ties with higher education forever - but I'm not sure I can do it anymore. I never wanted to be that woman (with the heart condition) in Beaches that sat on the beach, all frail & dressed in white, watching people involved in life (but not actually participating). Yet all I long for lately is that lawn chair to relax.
I'm tired, feeling weak and have hit my wall - when it comes to packing. I can't do it anymore alone. La femme has been a big help, but she's got her own house to pack and is currently very occupied with that - as she should be. That leaves me coming home to a never-ending pile of stuff that needs to be boxed, boxes needing to be moved, etc. etc. This is exactly why I did not want to move. All of the physical work. I need some time off work and I won't actually get any until the end of September (with the exception of labour day).
Tired.
This past week we've taken our guys to a lake/camp. I didn't even drive there. I got out of the daily drive for my shift by coming clean with not being able to drive on major highways without O2. I just wouldn't have enough O2 for the drive there and back on my little refill tanks. So, I went with my boss for the day shift - which meant I needed to not "sit around". Shit, even walking slowly outside for more than 15 minutes is something I can't do. So when did physical stamina become part of the job description?
Last month I applied to an agency closer to me - one that's also unionized and funded in part by some government agency. I did not even get a call-back. That was odd.
I am not sure what I'm going to do with this work - I can't just quit working altogether since we now have an even bigger mortgage than before (with this new bungalow). Yes, la femme can carry it on her own, but I'm not like that. I've been the type of person to have a few ongoing contracts, most of the time. Besides, we have a lot of expenses just with this new house. We're the type of people that don't like debt. I've payed my car mostly upfront. (These modern-day "don't pay a cent..." is unwise).
I'm exhausted. So much so that I'm seriously thinking of walking away from my college teaching (also done on the side). If I walk away this semester, just to take a break, they will never call me back. (No one else teaches what I teach, so it would really screw them). I know how they work there. I'm not sure I'm ready to cut ties with higher education forever - but I'm not sure I can do it anymore. I never wanted to be that woman (with the heart condition) in Beaches that sat on the beach, all frail & dressed in white, watching people involved in life (but not actually participating). Yet all I long for lately is that lawn chair to relax.
I'm tired, feeling weak and have hit my wall - when it comes to packing. I can't do it anymore alone. La femme has been a big help, but she's got her own house to pack and is currently very occupied with that - as she should be. That leaves me coming home to a never-ending pile of stuff that needs to be boxed, boxes needing to be moved, etc. etc. This is exactly why I did not want to move. All of the physical work. I need some time off work and I won't actually get any until the end of September (with the exception of labour day).
Tired.
Saturday, August 20, 2011
My house, the manor
I currently live on a street that starts with M, so for the past 4.5 years this house has been dubbed the Mxoxox-manor. Well, the manor is being moved - or at least it's contents.
It's gone through so much in 4.5 years since my wife and I bought it. It's seen separations, death, fun, dinner parties, friends, break up/divorce and new love. It's witnessed a tranformation of energy from love to anger to love again (all for the same person). It's seen some lows, very lows, and some highs, oh so delicous highs. As I took a break from packing this week I realized that next week it will mark a year since I met la femme. My life is completely renverser (backwards/upside down) and that's totally ok because for the first time in a long time it feels right side up. I think back a year ago and life was about getting through - stretching the time in this house as long as possible. Well, I'm defeated to the stairs, and as a result in a matter of a few weeks we'll be buzzing around our new bungalow - together. No more commuting (mainly on her part). Now to find a workplace with no stairs (my office is in the basement) or to consider cutting work out. It's not something I want to do - we have way too many expenses with the new house, but I've also not felt strong - as in, I feel weaker and weaker and I know it's not just the heat of summer because there's been no intense heat/humidity. I know this is a new norm - something I'm not quite prepared to face. Something that's starting to affect my job. We had some pretty intense days lately and my heart felt too weak to deal with (my clients') rage at work. (It's after that day I called in sick).
Saying goodbye to this house is bitter sweet. There's so much beauty here. The trees we planted 3 years ago that I never thought I'd see grow. Well some of them are as tall as me now. It's wonderful to see. Sad, but wonderful. I have sadness when I think about starting over in a new garden and not being able to see the new trees grow. My mom already bought me a house-warming gift: one of my favourite trees - the (false) nootka. It's a drippy-everygreen cedar type west-coast tree. They remind me of souls with droopy arms. I want to see that thing grow. I'm actually looking forward to my next cardio apt. because I want to see if cardio-man is ready to put me on the heart drug that costs upwards 7k a month. Not looking forward to that, but feeling like I need something to slow the weakening of my heart. If the lung-drugs bought me 2 years, maybe those will buy me 2 more. I know full well that the less I do (work, lifting, physical) the "longer" I'll stick around. That's hard for a stubborn ox like myself.
I'm also excited, to be starting a whole new life (whatever it's length) with la femme. Her best-friend (ex-spouse) told me once, that it would take someone awfully special for her to sell her house (her safety/security). Well, we get keys to 'our house' in 12 days. Guess I'm that special ;) but I'm also that happy. I won't pretend that we haven't had a few downs on the roller-coaster ride but when I think about the slow, solid base that we started, I feel overwhelmingly blessed. All the work I did last year (and continued, but at a slower pace this year) really did allow love to blossom again. Who is that lucky, to have 2 great loves in one lifetime!
It's gone through so much in 4.5 years since my wife and I bought it. It's seen separations, death, fun, dinner parties, friends, break up/divorce and new love. It's witnessed a tranformation of energy from love to anger to love again (all for the same person). It's seen some lows, very lows, and some highs, oh so delicous highs. As I took a break from packing this week I realized that next week it will mark a year since I met la femme. My life is completely renverser (backwards/upside down) and that's totally ok because for the first time in a long time it feels right side up. I think back a year ago and life was about getting through - stretching the time in this house as long as possible. Well, I'm defeated to the stairs, and as a result in a matter of a few weeks we'll be buzzing around our new bungalow - together. No more commuting (mainly on her part). Now to find a workplace with no stairs (my office is in the basement) or to consider cutting work out. It's not something I want to do - we have way too many expenses with the new house, but I've also not felt strong - as in, I feel weaker and weaker and I know it's not just the heat of summer because there's been no intense heat/humidity. I know this is a new norm - something I'm not quite prepared to face. Something that's starting to affect my job. We had some pretty intense days lately and my heart felt too weak to deal with (my clients') rage at work. (It's after that day I called in sick).
Saying goodbye to this house is bitter sweet. There's so much beauty here. The trees we planted 3 years ago that I never thought I'd see grow. Well some of them are as tall as me now. It's wonderful to see. Sad, but wonderful. I have sadness when I think about starting over in a new garden and not being able to see the new trees grow. My mom already bought me a house-warming gift: one of my favourite trees - the (false) nootka. It's a drippy-everygreen cedar type west-coast tree. They remind me of souls with droopy arms. I want to see that thing grow. I'm actually looking forward to my next cardio apt. because I want to see if cardio-man is ready to put me on the heart drug that costs upwards 7k a month. Not looking forward to that, but feeling like I need something to slow the weakening of my heart. If the lung-drugs bought me 2 years, maybe those will buy me 2 more. I know full well that the less I do (work, lifting, physical) the "longer" I'll stick around. That's hard for a stubborn ox like myself.
I'm also excited, to be starting a whole new life (whatever it's length) with la femme. Her best-friend (ex-spouse) told me once, that it would take someone awfully special for her to sell her house (her safety/security). Well, we get keys to 'our house' in 12 days. Guess I'm that special ;) but I'm also that happy. I won't pretend that we haven't had a few downs on the roller-coaster ride but when I think about the slow, solid base that we started, I feel overwhelmingly blessed. All the work I did last year (and continued, but at a slower pace this year) really did allow love to blossom again. Who is that lucky, to have 2 great loves in one lifetime!
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