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.

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.

Monday, September 26, 2011

I can't seem to post... even though I've been writing - something about a "javascript". Yes, I'm computer illiterate. Back soon...

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.

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!

catching up

Gawd this is the first quiet moment I've had in weeks. That's not to say I haven't been pondering a lot. I've had many reflections and entries waiting in my head but when they pop in I'm usually on the main floor of my house packing (or taking a break from packing) and running up stairs is the last thing I have excess energy to do.

At work I've been pushing myself - I'm so wanting a break that I called in sick yesterday. I came home to a smelly house. A turpentine like substance had been used by the handy-man to clean off old paint stains on the floor. It made me dizzy, so dizzy I decided, screw this, I'm not going to work tomorrow. So I got picked up and hid out at la femme francaise's house past the burbs. I watched cable -tv all day and went for a walk (she had another home-visit from a potential buyer). I needed to just get away from work - except my 4 day visit to Manitoulin Island, I haven't had a summer vacation and I won't have one. Packing my house is taking all of my time. I decided to book a week off at the end of September since La femme is invasive surgery on our one year anniversary (of being officially together). I will take that time to care for her (all on one floor!!), sew our wedding dresses, attend High Holiday services, rest, unpack (maybe) and prep my course since I teach this coming semester.

I am really over-taxing myself: downsizing & moving, wedding, teaching, partner's surgery. I'm sure there's more but I'm tired just thinking about it. We thought about not having the wedding, but we don't want to spend time not married - even if it's as low-key as done in her hospital bed, we just want to be together. I would rather not teach any more, but it's something I've always done and hard to say no to habit. Surgery can't be put off any longer, since it was supposed to take place in early summer but we were looking for homes then. And the packing - the reason I stayed in this house for much longer than I thought: moving is tiring for any healthy person, throw in heart-failure and well, let's just say I got out of breath rifling through the camping gear to find cord today. Ugh. But I've gotta go - I've known this for a long while. I've gotta go before those stairs get the better of me.

Saturday, July 30, 2011

nurse is an idiot

So I went to my dr.'s appointment to get an answer about my lumps on my neck. When I got there the dr. told me that everything was ok. So why on earth did the nurse say relay the message that dr. just had to see me immediately - that it couldn't wait a week. It was because the dr. was going to be away for a few weeks, yet the nurse did not relay that to me.
So said dr. said she would say something to the nurse who left that panicky message. I too said something on the way out.
That was not cool to worry a patient like that.
Anyway, the lumps... cysts. Benign cysts that perhaps flared when my body was fighting something. I have healthy lymph-nodes. I am happy, relieved and kicking that nurse's ass.

Thursday, July 28, 2011

phone call - what now?

I hate those kind of phone calls from doctors that say they want to see you right away.
My family physician's resident got the ultrasound back and wants to go over it with me. (My family phys. is away for the summer). I returned her message stating that tomorrow is really tight for me: clients & groups. She said that it's my choice but not something that can wait until next week.
That is never a good sign.
I swear if this is something on top of everything I already have (truncus arteriosis, heart failure, pulminary herptension, hypotension, hypoglycemia, endometriosis, scoliosis, shoulder dislocation, ptsd from early chronic health issues) I ... am not sure what I will do with myself.
I was in group this afternoon feeling so weak I wanted to leave. I'm so grateful it's a group I co-facilitate and that the guys really carried it today (awesome when that happens).
Tomorrow it will be revealed. I am trying not to catastrophize but it's awfully difficult when they say it needs to be addressed. I am just hoping to g-d that the resident is freaking out at my weird neck vessels - since she's not used to my condition. Praying that that's it - yes, let that be it.

Monday, July 25, 2011

weeds got the better of me today

Lately I haven't been writing a lot. I've been busy looking for another more suitable place to live, but I've also not been able to articulate the way I've been feeling towards this illness. I suppose two years ago I was adequately able to put feelings to screen mainly because they were fresh. It was easy to capture my dismay, sadness etc. when just out of the heart hospital the doctor says I get a couple of years. Then it was "easier" to write about my initial feelings. Now, not so much, perhaps because I've passed that 2 year mark - and when I did it felt like I was, yet again, proving the medical authorities wrong. Today, more than 2.5 years since that I don't feel like I'm winning. I am increasingly tired. My heart hurts a lot these days. My heart beat is in my throat, both sides are distended, often. I don't bother going for medical 'attention' because, really, what can they do? At this point NOTHING. Absolutely f-all. Every time I go to an ER, they don't even know what I have, I spend 12 hours there before they even say "hm, your potassium is too high, drink this". Then they tell me to see Dr. Cardio man who is already booked for November. I'll see him faster with my previously booked appointment. Canadian health care is great because it's free, but it would be nice to have some doctors around. Many are money hungry so off to the US they go to make mega bucks to buy toys rather than save our lives up here. I'm just really tired of our brain-drain. I'm tired of not getting answers and most of all I am tired or being tired.
I feel like crying every time I encounter another limit. Just this afternoon I sat on the back porch step, waiting for dinner to cook itself and I noticed some weeds by the little cedars I had planted a few years ago. I reached to pull out the 2 closests ones and found that I could barely do it, and once I did, I got dizzy and couldn't breath. Not 3 years ago I was at least able to plant vegetables, weed a little at my own pace at a seated position. Today, 2 weeds got the better of me. What else will get the better of me? How much do I have to loss? We're taking on a new mortgage and I pray that I am able to work another 2 years to contribute but quickly realizing the fingers are actually crossed to last another 2 months. My next cardio appointment (November) feels ages away. I wonder about those other drugs my Dr. Cardio man wants to put me on, wonder if they'll slow down the dying muscle because I do feel it dying. I am amazed at just how little I can do anymore, telling la femme Francaise that she really did get the shit end of the stick: it's not like with my ex who at least got some ability (camping, nature walks, gardening, etc.) out of me; but ma belle really gets nothing but company. I can't even go for an after dinner walk around the block. I hurt, my heart hurts. I want this dying process to slow down even further.
Please.

Friday, July 22, 2011

6 weeks of stairs left!

I'm SO tired. This heat has really been challenging my system. Yes, breathing is tiring. But so is the swelling. I can feel the edema in my chest. It sounds weird but I can. Sometimes when I'm not getting enough O2, the whites of my eyes go reddish. My left eye has not only been red the past 30 hours but it's also hurting a bit. Perhaps that's part of the cataracts I have.

In other news, the climb up these stairs will only last 6ish more weeks. I'm moving to a bungalow. I'm glad I started packing a while back - slowly mind you - but I needed to really be ready to leave this house, my first house that my ex wife and I bought together. There's a lot of love in this house, despite many yucky memories too. I also love this house. I will miss my sun-room the most. But, perhaps I'll love my new house even more. It's a weird house, very 70s and oddly shaped (the main floor windows look like basement windows - they are that high). Last year when I was trying to come to terms with giving up this house (dubbed the manor) I must have sounded too stubborn to a certain friend. He replied that it's much easier to find another house to make a home than it is another good partner. Well, he is right. A year later I look forward to making this new house a home with a new life with la femme francaise, a fresh start, with new memories all our own. This house is lovely, but it's laced in memories that her and I don't have, and no matter how many would could try and create here (if I get a stair-chair) it will always be the home that ex-wife and I found to build our life.

I'm looking at a lot of work ahead of me and I'm hoping that the money's there to hire people to 'do' all the stuff that needs to be done because I really can't do any of it. I am weak these days. I spend most of my energy at work - there are stairs there. Today was worse, I was up and down those so many times I actually snuck into the photocopy room to hide for a bit of a break, twice. It was one of those days when someone sees you they want something from you. Hiding was a must.
I just realized it's moved from "feeling weak" to "am weak". I have a hard time carrying my backpack with O2, something that's life-sustaining is so heavy. I wonder if the O2 really helps. I know that it sorta does: it temporarily prohibts me from passing out due very low O2-sats but my required settings have increased. I am no longer on 3lpm. I've moved up to 5 and still feel like I'm not getting enough. Unfortunately the machine only goes to 5 lpm. My face broke out from wearing is so much, I've tried the face-mask but the sticky plastic was no better. We've had to wrap the canula parts in cotton which has helped, but my face is still pretty red and icky. I've been wearing make-up again so that it's not so apparent at work.

Sunday, July 17, 2011

the sea-turtle: my totem animal

I'm exhausted. I've visited 33 houses in the past month or two. I'm hoping to be living in a bungalow, one-storey house, condo or apt. within the next few months. My energy levels are dropping - they usually do in this heat. It's exhausting. It was 34 (93) today with a humidex of 42 (107.6). I'm so grateful I have AC but so tired of the stairs. Another day of going up the stairs and staying up on the 2nd floor. I packed a few more boxes before I needed to lay down. What a life. I'm too tired to do anything (as I'm sure most people these days are since we are all moving super fast).
While I was packing up my office I came across and article on the sea-turtle and the preservation project going on in Malaysia. It was talking about how our great sea turtles are on the endangered species list for many reasons but mostly because of human selfishness. People in mainly the southern hemisphere find these living history books to be tasty delicacies. As a vegetarian that saddens me. As a human who has really come to believe the turtle is her totem animal, that enrages me. These beautifully amazing creatures have been around for millions of years - longer than the dinosaurs. They are walking history. Correction, they are swimming history. The leatherback is one of them: they are the largest turtle and reptile in the world. The article made mention of how (i forget which species) comes to land once in their lives, to lay eggs, and then waddles back to the ocean. Amazing creatures. The babies usually die since they provide food to seagulls, cray fish etc. on the beach on their way to the ocean. But, if they survive, they can live a very very long time. Slow, long living and hard-shelled, these turtles sound a lot like me. I'm stubborn, have lived much longer than anyone, medical or not, would have imagined. I'm also slow, and slowing down further. I'm still full of pride and continue to work, pull my weight. Soon that will have to change since work is getting a bit faster. The pace is picking up and I'm not able to keep up. Either I will go out of self-preservation or they will get rid of me because I can't cut it.
My mother turned 70 yesterday. I never imagined my mother as old. I never imagined I'd be around to see that. I figure she will live another 18-29 years, just like grandmaman. That side of the family has good genes, modern illnesses not withstanding. My father's side, not so much. All the males have died by age 70. Most of them in their 60s. I hope I'm here to see my 40th, and that my mom is here to see me turn 40.
Lastly, the progesterone I"m on is making havoc of my face. It's breaking out exactly where the nasal cannula sits so my face has has permanent red marks for over a month now. It's not only ugly, it's also itchy, uncomfortable and I'm getting so tired of having stuff on my face. It would be nice to sleep free of anything, for just once. I could, but then I wouldn't have enough stamina to go to work. Even my bp was 84/57 last week at the doctor's office. Yikes?!

Monday, July 4, 2011

long weekend

I just got back from an extended long weekend (Friday and Monday off) spent on beautiful Manitoulin Island. I enjoyed my visit with my long-time friend & 'minister' (the woman that officiated my wedding). I was curious to see what took her away from her community in Ottawa. The land. Their land. The family purchased beautiful land at about the same time I started my separation. It is peaceful up there. A beautiful river runs through it.

Anyway, it was a slow weekend. I had the portable POC (Portable Oxygen Concentrator) thankfully. And since we were far away from home, where no one knew me, I was able to wear it without fear of running into clients etc. What I do on time off, or mini-vacations is limited now with my illness. I used to be able to at least walk a kilometer trail to waterfalls etc. Today: no can do. I can only stay by the lookout.

On the drive home I played with my neck and found a lump. I spent some time rubbing it, thinking it was a small ball of tension. Seeing as I just had a massage I find it odd that it's there. Anyhow, even after rubbing it, hours later, it's still there. I'm going to get it checked out. But lumps aren't good. My best friend in high school got lumps all over her neck before she was diagnosed with lung-cancer. I don't think it's that, but I don't need it to be anything. I think heart/lung disease is quite enough.

These hormones are also playing havoc with my system. Week 6 and my weight gain is very uncomfortable ( I don't fit into anything and the tightness doesn't help with the lower back pain). My face also looks like I'm 14 again: all oily and broken out.

Friday, June 24, 2011

chronic pain

It dawned on me the other day when I was coming home from an acupuncture session that I spend a lot of time in pain these days. The rest of that time is spent around trying to avoid it, treat it or figure it out. And yet I've never mentioned it to my doctor. Pain seems trivial when I have so many other things on the go - but pain affects my quality of life. And I wonder what it's impact is on the heart muscle that has to send out more "pain soothing ocytocin-like" hormones/signals/coping mechanisms. Hm. So as I remind myself of all the side-effects of Endometriosis I realize it's a much bigger problem - in me anyway- than it should be. People think it means painful periods but over the years it has also affected my sciatica, my bowels, my lower back, hip bones, etc. So this Mirena in me better work wonders because between my belly button and my thighs all I feel all the time since it was inserted has been pain. It's a deep pain that can't be rubbed out (I go for massage therapy, acupuncture, etc.). It hurts to walk, sit, lie down, drive home - you get the picture. I have become really bloated and of course my skin is breaking out like I'm a teeanager. All of the listed side-effects are happening, including the increased palpitations. Fun. I give this thing 5 more months and if it's not worth the effects, it's coming out.

One day it would be really nice to have some relief - to not have any possible health issue happen to me. I am not seeking pity and don't enjoy self-pit as a habit from the past, but living in a container that doesn't feel so damn uncomfortable would be really nice for a change. This pain combined with my general lack of energy does not allow for much to happen once I get home from work. My kitchen floor is less clean than I'd like (actually it's pretty icky even by other people's standards, since mine are a bit high). It's as if it's winter again: I come home, grab food and head up to my room. This up and down the stairs thing is tiring. I really need to down-size. I'm caught in a web where I've finally let go of this house (emotionally) but the finances, timing, etc. etc. are not playing nice. My family is unsupportive and say I'm rushing out. Must be nice to not have any physical limitations to consider when making a decision. I wonder what it's like to be totally healthy and give opinions from that place of privilege (judgement). Oh to dream.

Thursday, June 16, 2011

bad day - and none of it was due to health!

Two years ago today I received a phone call that changed my life. I processed that this morning, doing the same thing I did two years ago at the exact same time with the exact same therapist.
Two years later I receive a letter that's having the same effect. Sadly, I hope it doesn't take the next two years to 'get over it'.

In the meantime, I'm regrouping and figuring out what I'm going to do. All that's clear right now is that I have to let go of this house, now. Thing is I'm a china-doll. I can't even carry a box down the stairs never mind do my laundry (involves 2 flights of stairs). I'll manage, I'm a survivor. I always have and always will.

Monday, June 13, 2011

existential

I've been struggling with existential angst since I got home from the trip that went wrong in March. I'm still haunted by the places I've never been and have always wanted to go to. I keep trying to figure out how I can re-do that trip. Keep recalculating ways to get to the four-corners and no matter what kind of stubbornness and persistence that I have, I know I cannot safely go there without causing real damage and that damage according to my cardiologist could be irreversible (death). I love life more than risking it to go anywhere, but I'm getting cabin fever. I cannot travel anymore. The entire world is now inaccessible to me. Even a driving trip to cape cod may be a bit risky. Heck these days it feels like driving to work could be risky. Thank goodness for portable refillable tanks.

just getting on with it.

So here we are two weeks into this new medication - an experiment - and I lost most of my weekend. I've spent the time curled up in a ball, in fetal position in tremendous pain, some of the worst in 18 months. If this type of pain continues (at the 6 month mark) I'm asking them to take this device out. I've lost count of the wicked palpitations. Many of which have taken my breath away.

I'm also gaining weight - which originally was a great thing for me, ms. skinny. However, I can't fit into half of my clothes, including some of my favourite dresses I made a few years back. I'm actually feeling big. I know I'm miles away from that, but I'm no longer "skinny". This is a little disconcerting because it's only been 2 weeks on this hormone. Hm.

Anyway, after the pain this weekend, I'm convinced that as much as I love this house, the decision to sell/leave is the right one. I could barely make it up the stairs. I can't keep avoiding going up and down all the time. So I've slowly been going through my stuff. Again. I did this a year ago, downsizing without direction. Today, it's a "joy" to get rid of stuff because now I'm making room for someone else. As I welcome my present/future, the letting go is getting a bit easier (although it's always a little tough to let go of much beloved stuff. We humans develop such attachment to our stuff, thinking we get comfort from it, when really it's the memories we are attached to).

Oh, ya, work.... has shifted. We finally got a new manager, which means I moved out of the main floor office I camped out in the past 3 months. I've moved to the basement which means I have to do stairs again, but it also affords me with more privacy (no window on my door). If I need to (during lunch or case notes) I can sit and suck on some O2. Thing is I'm usually in group or in session and don't actually have time. But the space is there and the tank is on me if I need to. I'm happy about that. I haven't told my new boss about my illness or at least, limitations, yet. I just updated her today of the colleague-harassment I've been experiencing the past 3 months. The last person that mentioned something about the condescending co-worker was let go. It's not government, there's no such thing as job security where I work. I took a risk. It's also weird because this boss was one of my students 10 years ago when I first started teaching at the college and was not yet trained in teaching nor did I have my masters at that point. Great first impression! And weird to have a former student (who was disruptive in class if I recall) as a boss.

Sunday, May 22, 2011

Desert follow-up

I had a follow-up Cardio apt. the other day. Seems dr. cardio man wants to put me on new heart drugs too. The lung drugs are doing it's thing but the heart is still slowly dying. He said these drugs would help it work more efficiently and that they cost as much as the lung (DD) drugs. Gotta love those drug companies! Right now he's going to wait until my next apt. in 6 months because there isn't much information on how the two drugs work when combined. According to him there is another woman in the clinic also on DD and she's just started HD (heart drug) so he wants to wait and see. Ah, someone else being a guinea pig for once. I'm down with that (although if they're working, I'd wish to be on them sooner... feels like there's hope for a few more years).

In other non-heart related areas of my life, this down-sizing project isn't coming soon enough. I'm overwhelmed with how fast things get messy in a big house, and how big it can get. I'm very comfortable with the decision now, only to have it stall - I guess it was about making it, not it actually happening.

We've had other bigger, more life-altering stuff thrown our way in the past week. I'm not at liberty to write about them yet, it's been terrifying working against the clock to try and stop something huge from taking over. I'm only now learning about compassion and true non-judgement even for a group of people/values that I disowned in my youth. When the political becomes personal, the personal get political.

Saturday, April 30, 2011

breaking down the wall

I haven't written in a month and a day.
I've been taking it easy after the hospital. Somewhere in the back of my mind I realized shit is not worth my life. My life continues to be a roller coaster yet I can handle it.
It amazes me how I'm letting stress role off my shoulders. Work got very very icky for a while there... there was a dangerous incident at work that ended badly (not as badly as it could have). The bad part was I found out who's got my back at work, and who doesn't. Said person is applying for the managerial job. If she becomes my boss I'll be walking.

It's been a month of realizing how far I've come even though I have no idea where I'm going. La femme was going to move in. Then we were going to just down size. Well, now I'm downsizing. I've made a decision to sell: I am having to pack up my house. It's a nightmare decision but one person in a 3-bedroom house (on 3 stories) is a lot of work. One person in heart failure, that's too much. I was taking the yard waste back to the shed this morning after doing some front yard work, asking myself what the hell I was doing. I can't be carrying this stuff. Nor can I carry it to the curb on garbage days. I can't live here anymore. I've been fighting this decisions for over a year, buying more time with room rentals but even that is getting so taxing. So now, I think I'm almost ready to pack up my life/house into a one-bedroom apt. My health, my sanity, my safety and security is worth more than any piece of property with potential.

So down to the basement I went and started (at my own pace) tearing down my wall. (My ex built a faux-wall for me years ago during our second separation when she moved out and I rented all the upstairs rooms to make ends meet.) Well now it's coming down. Me, a hammer, anger. Only problem is I don't have that much anger anymore. Perhaps I should have torn it down 10 months ago. Even now I'm not angry, just hurt. That elusive search for a lifelong partnership is tiring. As I whined a year ago, I felt that in the end I would end up alone. I am comforted by the 'fact' that I didn't actually do anything all that wrong, that my recovery is not for nothing. I have and am changing. In the end, I have me, and that's more than I had last year.

Tuesday, March 29, 2011

back from the heart-hospital

I just spent two and a half days in our heart hospital. I knew this recent trip taxed me out so the only responsible thing was to go to the ER to get into the heart hospital to see exactly what was going on since my squeezing chest and shortness of breath hadn't improved since I returned to Canada. Perhaps I'm a little impatient to have rest return the body to homeostasis but when it comes to health, it's more important to check right away. That and my Dr. Cardio man and Cardio-NP would rather see me there then not show up when something could have gone wrong. Of course, entering via the ER proved to be an educating experience on their part - again. A friend brought me. I also let my Ex know since she is still my emergency contact (and she knows my health history so if people want to give me, say nitro (which they attempted) I could still depend on her. She is still dependable and love is still there - on both our parts, despite the brokenness of it all. In fact, at one point I had both la femme and la Ex there and I felt so lucky to have not one but two women that love me very much. Even more if I include my friend that brought me who couldn't stay because it was 'family' only (they were over capacity again). So yes, educational in that even the on-call cardiologist had no idea how to handle my illness so decided just to move me over to the heart hospital. But in the mean time he did make me go through a cat-scan (I hate those things with all that hot die running through my veins. It makes me feel like my head is bursting.) No blood clots were found, no embolisms and really the only thing that was off was my haemoglobin so they gave me a phlebotomy. I'm so glad that my day nurse did it and not my night nurse because the night one didn't even know what a phlebotomy was. My day nurse on the other hand made a usually displeasing and really annoying procedure (that when done wrong is very uncomfortable at best) very fast and well, fast. She poked me in all the right places and was done before I could start telling the other cardiologists (in training) how icky they usually make me feel. Truth be told though, the ativan probably helped. But really, she is a really good nurse. As usual I had a team of students look at me. The chief of cardiology grabbed my hands (permission granted) and quizzed their eager little future cardiologists. He asked them what they saw (even I knew what he was looking for as I used to quiz my wife's peers when she was going through paramedic school. Then he told the kids about my illness calling me an original blue baby. (I guess there aren't any anymore). I'm sure I have more to write but I'm very tired. I'm expected back at work tomorrow. The only good thing about that it that it's a "slow" day but I'm sure I'll be packed with catching up on shit from being away for 10 days. I'm not quite sure how I'm going to survive without O2 since I've spend the past 10 days on O2 - non-stop except when I showered and tonight when my sister brought me home. We sat and chatted for over 20 minutes but I was without O2. I was very dizzy with her (it was nice catching up.... it's nice to have a sister again). All my thoughts and hopes about dropping down to part-time are out the window. Those were based on plans la femme and I had. I'm thinking of just getting rid of this house for once and for all so all I have to manage is a small apartment - but it would not be in my best interest to live alone (who would be there to call 911 if I couldn't?). In the meantime I need to get through work tomorrow and make sure my O2 carrier is working on some sort of quiet portable solution for work (even if I suck on it over lunch...)

Sunday, March 27, 2011

I am home!

I am home and in one piece... everything else is a little worse for wear. I am grateful the flight from Chicago was only an hour and a half. It was getting difficult to breath and I know I've surely created some damage (signs of liver congestion for sure). I see my Dr. Cardio man in a few weeks, my regular doctor this week. I am tired, drained, grateful to be with my two little fury creatures. I can't find my meds (DD) and have no more left from the trip if I can't find the new box (ordered so I'd have some upon my return). Normally I can find them within an hour, retrace my steps. This trip has been so traumatizing both physically and emotionally that I have no clue where they are. This is the worst time to be without them. I thought the nightmare would end being back on Canadian soil. Apparently not. March was supposed to be a month of great shifts and changes. There are changes occurring for sure, just not the ones I ever imagined entering this month. I'm too tired for this but will continue trucking on because that's what I do. Facing a big limitation - of not having the ability to complete one of my bucket-list items hasn't even been processed yet. I was in survival mode, just searching for lower ground and getting the hell outta there and hack home. Not being able to complete this latest activity also drives home everything my Dr. Cardio man and NP were trying to drill in to my head: you're not well enough to travel. No more flights? I like to think I still can be the reality is this city is my life (with the exception of weekend driving trips etc.). Even then, there's so much more to travelling than just getting in the car like when I was a young neo-hippy: get & go. (oh dear, the broken English of the south has 'gotten' to me). I used to not know what was worse: being trapped in a foreign land where if something happens to you no one cares, or being trapped (limited to a day's drive of) here in this boring little town. I know for certain this is the right place to be. Even if something happens to me in the middle of nowhere Canada, I know I will be cared for. Thanks to our mildly socialized influences on health care (and care for people in general) I feel safe and secure here. This truly is the best country in the world. (Even our religious extremists pale to comparison in the deep south: they have guns there!). Early on in our trip when we were stuck in northern Tx, we tried to limit our stops there as much as possible: it's a large state to cross so we were stuck there for nearly 2 days, we had to eat at one point so we hit a road-side dinner. When we walked in, both of us pale white, both with short hair and me with my little rolly O2 machine, peoples' tanned heads/hats really did turn. There were only 3 other women in that diner and 2 of 'em were serving. Of course, in meat country "vegetarian" in a blasphemy so I just ordered salad (which all had meat in!). It is oil country (the sight of the oil pumps littering the landscape was surreal) and the stench in the air was making breathing challenging (again). That was probably the most unsafe I've felt in a long time (the only other time was when I worked at a store downtown here and was robbed. I later found out that it really was a gun in his jacket and not his hand. I quit the next day. So all this to say I'm greiving yet another loss: the ability to move around freely. To go where I thought I could go now that I can afford to travel a bit. Nope, that's not in my cards. Neither are half my dreams I had walking into this month. I return to work tomorrow, with no DD meds, and perhaps without a job. I am bracing myself for whatever comes.

Thursday, March 24, 2011

hell

I am in hell, otherwise known as the 'nited states of america.
I just don't know where to begin.
Perhaps with sharing my greatest fear in the world: I am agoraphobic - the fear of uncontrolled social conditions, a person always needing a sense of safety (also known as looking for an escape route real or imaginary). There, I've admitted my greatest fear to the world. Now let me state that although I have that, I have been to France, Bahamas and even Mexico. How does this relate to my agoraphobia. I need a way to get home (that's not dependent on air), even if it's by donkey. One cannot take a bus or a train home from France. But I went anyway.
So here I am in the US, needing to get out.

At first the elevation was just too high for my health. I was swallowing blood. I had two options, to stay at low elevation with a friend until I became more stable, or to just start driving and head as far east and north as we could. My travel companion and I chose the second route. Mainly because I feared not being well enough to board on Sat. and then perhaps facing the driving choice then. So here we are finally in lower ground and things are still going to hell. Details are not important nor do I have energy for them. This is my living nightmare. I want to go home.
I am safe, I have my O2, we are sheltered. I know it could be worse, but it's precisely because this situation is pulling at MY greatest fear that this is intolerable.

If I ever get home safe and healthy I will NEVER travel to the states again... sure there's driving (is cross-border even worth it?) but I will never ever ever use american air-carriers. From being afraid of being a woman in scary-Texas to the salt and MSG added to every food imaginable to the upselling and rip-off taxes here there & every where, I think I will stick to my one tax: hst. I get my health-care, my roads, etc. all paid for under ONE tax!

Monday, March 21, 2011

trapped - travel II

I'm trapped with no way out. I'm praying for a solution. I could not go across the desert. I'm sick and my cardiologist was right... elevation is getting to me. I cannot board a plane because I am no longer stable. I know my body, and these sensations rendered me in the cardio-hospital 2 years ago. Now all I can do is seek refuge for a night somewhere "low" (for desert standards) 1200ft above sea level. We are driving as far east as we can to go home. The only problem is the elevation over the next leg of the journey is the highest point (at NM lowest point bordering TX). During the day it taxes me in the car but at night, I must have a place of lower elevation in order for my body to recharge. I'm scared for the rest of this journey home. I spent half the day leaving Las Vegas and mourning my trip, my loss of freedom and realizing that many bucket-list items will not ever get done no matter how much chutzpa I have. My chest hurts. Badly.
We are driving because I know in my heart of hearts that I am not stable enough to re board an aircraft.
I am angry with myself that I thought I could do this. I did not realize just how high high was. At this point it's not even money that concerns me, it's finding a safe way out. Damn Colorado plateau! It's just 16 hours to flat lands again... but it's that hump I'm very afraid of. I'm afraid of sleeping in the next town who's elevation is still twice that of Vegas. I had a bad night last night.
A good night's sleep might help - but I'm afraid to go to bed. The O2 just isn't enough.

Sunday, March 20, 2011

vacation II

I may have to come home... I am not fairing very well. I realize my body is not acclimatized but we're still at the lowest elevation part of this entire trip.
In fact the airport we have to fly out of is in the city with the highest metropolitan elevation in the US. I don't know why I didn't look into that before picking airports.
I taste blood, I cannot breathe on 24hr O2. We've already scratched 1/2 the natural wonders off the list because I can't cope.
The doctors were right, my body is not as strong as I think. My spirit, kick ass. Reality...is kicking my ass. Not sure what I'm going to do. I'm a million miles away from home, this trip has already cost more than Israel (states and their stupid surprise surtaxes on everything, and they complain about our one tax of everything. At least it's known.). If we change airports now... whatever.

travel I

Well, I know I won't be able to ever see Israel. It's day 1 and I am beat. The first flight wasn't so bad since it was a short one. Second flight was another thing. As we climbed over the Rockies I could feel my body being taxed over the increased elevation. Yes I wore my O2 the entire time, I also had my compression socks on (although I couldn't find full leg one, only knee high). It's 3 hours later in my body making for an 18hour day with 2 flights, lots of salt, smoke and high elevation.
I'm saddened that a transatlantic (or Pacific for that matter) flight will never happen. I'm sitting at the base of the tackiest valley in the world, elevation of 3900 feet and I can't go 3 minutes without O2. Just getting into the hotel was a nightmare, with smoke all around (and none smoking signs above). The US is a joke - land of the free my ass. I will be leaving Vegas in the morning covered in smoke choking from from the stench. It won't matter how long I shower for, it's coming with me. My freedom to breath clean are seems to not matter. My freedom to have a peaceful sleep doesn't seem to matter either.
I have no interest in going to the Strip to see all the wasted electricity in Sin City. On the highway we passed the Bellagio, Caesar's and all the grand names. I thought about taking a jaunt but this old sick is is sick of tacky and my journey has only just begun. I won't be spending a second night here, but that's OK - it means I might actually be able to fit in a day trip to the Grand Canyon. We will see. I am enjoying speaking a whole other language, a secret language here with la femme (although I have to be careful for the French tourists, but whatever, c'est la vie).
My curiosity for those grand casino-hotel-resorts has completely disappeared after checking in (with cigarettes not even 2 feet from me) when I took a look at just how desperate people look sitting there with alcohol in hand spending money and having cigarettes dangle from their mouths. Perhaps Canadians are boring, but I think I'll keep my dignity and money intact and spend it on 4X4'ing in the desert looking at the earth's crust built up over 12 million years ago (the reading I did on the plane had some very fascinating facts about how all this land was built up, eroded, developed. As recently experienced in Japan, our Earth is magnificent beyond reason - it can move and island country 3 meters in one earth quake - it produces massive red rock formations and "natural bridges" that don't even compare with the man-made neon blinking outside this window.
So in the end being under the full moon in the desert is overshadowed by the neon. It's too bad because this is the closest the moon has been to the earth in over 20 years. (I did get a look at it on the way in, but the city is brighter than it's splendor).
At least here I don't give a shit about walking around with O2 - I can't. Without it I won't make it.

Wednesday, March 16, 2011

march- big shifts

It's been a hectic few weeks. There are many times I've wanted to write... much life life-impacting choices have been made, new directions etc. But I just haven't had the time. I'm going away on vacation and it just seems that everything that needs closure in my life needs it before I go away. My thesis has finally been approved for publication... only after like 4 revisions in the last 3 weeks alone, never mind the past 3 months! This thing has consumed my life for far too long and for the past 8 months it's been nonstop. In the end it's twice as long as it should have been but was accepted because during one of the earlier edits, I cut everything down to their word allotment and my supervisor had a hissy.... saying all the good stuff was gone. So approval for double the words was sought. Thanks goodness cuz I've been running on empty for a long time. I wanted to see this thing approved and done with around the same time that la femme was done her promotional course. But, alas, my APA just wasn't up to par. Oh those spaces and hyphens. But, it's in and my application for graduation is in. Finally. It's not all secured and I'll be expecting something when I come back - because that's just how Murphy works in my life. He never got the divorce papers.

Speaking of that.... on my birthday I decided to finally grant myself some closure. I've heard through the grapevine that she wants closure but of course she's doing nothing about it. So off to divorce court I went. That and she never sent me a birthday greeting. Silence was always her weapon of choice and it seems it's still being used. For the first time in 11 years not one greeting. Even last year she sent me a card. I miss my once best friend, but what can I do- I'm forced to move on since she won't have it. Someone said to me recently that "I won". On the outside everything looks great: I'm in a new relationship, I'm still working at a job I (used to) love, I have the house, etc. etc. So why is it after the application I felt so empty, so defeated? I sat in the family court's waiting room sobbing into my jacket. I have no shame in my tears but snot running out my nose is a whole other thing. As I tried to regain composure, to muster up a little bit of strength to return to my car, an old lady walked by saying "it gets better dear, it just takes time". I thought about what that friend said about me wining. No one won here. This isn't even a race or competition. I lost just as much as she did. I lost my marriage, my wife, my family, my best friend and my soul mate. Just because someone new is in my life does not take away from the loss and devastation that I too went through. The only difference is that I have the drive to get back up again. I didn't "win" I worked my ass of spiritually, and otherwise to become a person that would attract a woman like la femme francaise. A client said to me the other day, success isn't about the things you win, concur, have etc. it's about how your deal with your losses, set backs, devastation. He couldn't have had better timing. I chose to face my devastation and let it strengthen my already strong-ass spirit. So I used that strength to declare my loss legally.

On the level of great things happening in March, la femme francaise finally met my family (I met her last month). Yes... I can tell she's approved by my mother because they spoke almost exclusively in French. My siblings said after that it was so nice to hear my mother speak French (she doesn't with us- perhaps because our French sucks). It can't be that bad, since a few days ago la femme and I had a miss-understanding all in French. Miss-understanding aside, I couldn't believe I could express myself when sad, using about 95% French. And she understood! But that doesn't indicate that the French was actually any good! (My housemates don't understand french so that's our 'safe language'.)

So much emotionally significant shifts happening that we've decided to take bigger decisions off the table. I've continued to work. She's continued to live in her house. Work has only gotten crazier. After my boss got let go, someone else on my team quit a few weeks ago. As of this week yet another person is on stress leave. We are down to bare bones and as much as it's a very bad time to go away and leave only 3 other people to run 5 programs, the only thing I can do without outright quitting at this point would be to go away and recharge.

I am looking forward to the desert. I've had this trip on my bucket list for 20 years, literally. Aside from landing in the big city, once we're outta there I hope to not encounter another group of people (larger than 20) again until the other side of the desert where we fly out - and that is completely possible. I was a little disappointed to not get a blue jeep to rent, but apparently there are lots of off road Jeep Wrangler desert-day rentals. We'll be spending our 7th full moon in the desert. This trip I'll have a portable O2 compressor so no more dealing with tank-exchanges. I'm so excited....

Sunday, March 6, 2011

going to the desert...

I've been cleared to fly!

Sorta. I am picking up my portable O2 compressor this month. In order to use it in flight, and just bring it at all I needed clearance from Dr. Cardio man. When I sent an email to cardio NP I didn't hear back. So I called to follow up and she didn't even read it... long story short I booked a ticket last minute. I do not like travelling with this little time to organize things - costs go up, things are booked, etc. etc. I'm coming to terms with letting go of Israel - I have to since this trip is going to cost as much as Israel (it should have only cost half, but thanks to last minute the flights are 60% more and I can't seem to find a Jeep to rent anywhere - so much for another item off the bucket list).


When my cardio NP gave me the "good" news she was fairly condescending - the first time ever. I felt like she was trying to tell me not to live. I understand that I'm not as well as I was when I flew to Florida, or to my brother's wedding in sweltering Mexico, but if I'm going, I'm going to live it out. So she gave me the typical: watch your salt, wear diabetic socks, don't strain yourself, etc. etc. information that I already have for living my daily life in town. I felt like she was talking to an idiot. I mean, I get that I can go into an arrhythmia at any time - not just when I'm thousands of miles from home. What's the difference. I'm DNR either way. Do they really think if I'm under their watchful eye that they will be able to help me if/when these things happen?


They say I am allowed to go, so long as I know the risks, then don't bother telling me what they are, only give me warnings. So I'm going. This is my life, my bucket list.

Thursday, March 3, 2011

Vegetarianism

As I waited for my Ethiopian stew to cook I flipped through a health magazine I got free at my neighbourhood health food store. In it there was an article about organic beef with a picture of a big old cow. I'm not a fan of cows, I don't think they're cute or cuddly like rabbits or lambs or other furry animals that people eat, but they have eyes, an a nervous system. They feel. They breath. They hurt.

And those are probably one of the first reasons I became a vegetarian 22 years ago. Over the years I've remained a non-meat-eater for all the reasons under the sun: if it was an argument for vegetarianism, I probably ascribed to it at one point or another. Twenty-two years is a long time. I've never done anything else that long (except drive). In that time I've learned how to cook and became a pretty good cook if I (and my ex) do say so. I've learned to cook Ethiopian, Thai, Vietnamese, Mexican (a little thanks to my brown-skinned sister-in-law: that was she identifies as), Indian and many other types of food. I've become so accustomed to eating a certain way ("ethnic") that the last 5 or so years (at least) I've no no reasons to be vegetarian except out of habit. So coming across this article on beef surely made me revisit one of my earliest reasons: cruelty to animals. I guess since it's been absent from my life for more than half of my life it seems ridiculous to eat another living breathing creature. We are after all part of the same family: we are all animals on a certain level. Only our brain is bigger and we have possible thumbs.

I'm not writing this as a conversion piece. I respect every one's needs to eat what they want just as I've appreciated respect over the years to choose my own path (of course except from my blood family, so I stopped going to their dinners when all they had for me was potatoes in the meat and potato dinner. I tried cooking "ethnic" for them but they wouldn't have it). I write because sometimes I feel like I'm part of the wrong era or culture - like I should be in part of the world/religion that does not eat animals and could not even fathom doing such a thing. Animals are our friends, our companions, our workmates, etc, but not our meals. I look at my cats often and think about how they are eaten in different parts of the world and how it may seem strange to us here in North America but then we'll turn around and have ground up cow-fat. My cats give me so much more than one meal - or even a week's worth of meals. They give me a (short) lifetime of loyalty and company. To exchange that for a few days of nourishment is ludicrous. This tells me that meat-eating is not sustainable. There needs to be a massive amount of violence and bloodshed to eat for a day (or a week depending on the size of the animal). It does not replenish itself like plants do. I just don't get it - I don't understand a society or societies that can misinform the masses about misconceptions about protein and "lack of protein" just to support the business of murder. Perhaps if Betsy was your friend you would think twice. As for me, I know that I love my little furry companions and they give me more than just a few meals. They give me loyalty, humour and laughter, compassion, love (I know animals don't feel love, but I feel it), and of course priceless company.

Wednesday, March 2, 2011

It's March

It's March - a time of return of the light - the lengthening of days, the rise in temperatures and the sun's distance to us is much, much closer. March has always been a time of flurry for me. With all my siblings as well as myself being born in March it seemed, as a child anyway, that we were always celebrating someone. Then I grew up, met other Pisces and the partying continued. (not in the substance-use-abuse sense). At this age it's a different kind of celebration: making it through another winter. Sure, in this part of the country there are still winter snow storms, well into April actually, but they have a different taste to them: there's a sweetness of warming sun that usually follows the storm. It gives hope to squishy-sticky mud and cold-spring showers along with the anticipation of tulips and the sight of the first pussy-willows under the white blanket of melting snow in the backyard. I have neither pussy-willows nor tulips planted. My spring is marked by increased pain in my hand. You see the mild weather triggers my rheumatoid arthritis - yet one more condition brought on by lack of circulation in the body.

But all this also brings hope and renewal knowing that I've almost made it through another winter. I'm spoiled in my modern western world that I live in. I don't even have to walk longer than a block or two in my life of late. I am fortunate enough to have a car, yes I have a "disability pass" (which my lover calls my princess pass). I do not take the bus. I am a 'bad environmentalist'. However I am also 'disabled'. I am also a vegetarian. I read somewhere, in some green report years ago that the modern-western meat industry accounts for more greenhouse emissions that the sum total of all the cars on earth. So, being a vegetarian (for 21 years) basically renders my 21 years of driving a car. I'm carbon neutral. It may sound like I'm making light of our precious earth - I assure you I'm not. I was on all sorts of green committees in high school, sewed cloth bags at 16 long, long before this ever became a trend. But, I also recognize how much quality of life my driving has given me. I'm sure I've extended my life because of modern western conveniences. I say this while I reflect upon the less than 50 feet of snow I had to walk in today. My crew at work went to our work's cottage for a little team-retreat. There's been some major overhauling in our department and it was about time we took a little break. But, because it's in the country the lane way wasn't plowed after Monday night's big snow storm. So, we walked up the snow-covered lane way carrying all of our food supplies. Of course I had a hard time. I don't push myself anymore, not to the point of keeping up with the regular 2-valved folk. (I push myself because I never want to give up, the day I give up is the day this miraculous system stops working). Something a friend said, or rather texted me just a few days ago, in the middle of my work melt-down, really really sank in. It's helping me make wise-decisions, asking myself if what I am about to choose is worth my life, because that's what it's coming down to.

So today I am looking at getting through this (work upheaval) one day at a time, learning to say no but being prepared about the possible outcome. But If I don't say no to them, I'm saying no to my life. There's too much yet to do, and where I'm at now, some of my bucket list dreams are starting to become a possibility. Sorta. I found my dream car/jeep. At a price I can afford (although I'm not sure I want to own 2 vehicles). I am just waiting on the OK for travel to one of my bucket-list places. I found portable O2, and I'm sick enough that I will continue to be funded. So, living my dreams will require swallowing a lot of pride as I move into wearing O2 a lot more often. Some days I'm not sure I'm willing to swallow that steadfast pride, other days I look at my love, la femme that treats me like I've always known I deserve, la femme that brings out the gentle wonder that I am, I look at her and say yes to the O2, realizing that it will give me MORE time with her. And that's exactly what I want: MORE. (Coincidentally, for our 3month I found a card in a spiritual shop by my work that had one of the chakra centres filling the cover and on it in Tibetan-type script is said, most appropriately "more..." Inside it said "more time, more laughter, move love" and even though I've been declining again, I want more with her. MORE! I pray for a spring plateau that lasts the rest of the year. I pray to see 38 (even though it is "only" a week away). I pray for more...

Monday, February 28, 2011

Respiratory therapist visit

I had my visit from my Rep. therapist. She looked at the numbers off the O2 sat monitors and said not to worry, I'll still be covered for funding. The numbers were low, very low, to the point that she asked me how on earth I am still working and running around without O2 and conscious. Yeah, the last part's been a struggle.

She gave me a few recommendations but not before we established that our paths crossed at one point long long ago. We have a friend in common. One of my earliest girlfriends. You see I went to a Queer youth group back in the day and dated a certain girl who I'm still in touch with and friends today. My rep therapist was apparently her straight friend that supported my friend and brought her to the youth group. Ah small towns. As much as this city has grown over the years, it still remains a big town in my mind. I don't like that I am back in the town I was born and raised in. I miss my Montreal life so much so. I had the opportunity to gaze at Montreal's skyline when la femme picked me up at the train station for her on-base grad (oh, I'm so proud of her). I miss living in a city with an actual sky-line. I could not live there now if my life depended on it. I'm just not bilingual enough (although I'm proud to say that la femme has pointed out that some converstations are almost exclusively in french (ok maybe not good french, but french nonetheless).

Back to the respiratory therapist's visit: She gave me a few stern warnings. Something that I hesitate to write here for fear of legal repercussions, but something I know anyway and haven't actually been doing in a while: I can't be driving long-distance anymore (unless I'm wearing O2). So guess what my next step is: getting a portable O2 compressor. I would rather swallow my pride than lose my freedom!

Since I moved to days and started facing regular rush hour traffic I haven't used the highway anyway. I am lucky enough (my choice actually) to live within a reasonable commute to cut through the city. That is why I will never move in with ma belle: she lives in suburb so far away that you have to use the highway unless you want to spend over an hour on the road. I do not. So there you have it, my freedom is being cut - sorta. I've also made the decision to choose my routes wisely until I get the portable.

And of course, yet another "medical" professional looking at my numbers and wondering how on earth I can survive with an o-sat rate of 68% (upon walking up the stairs). (No alarm bells, when I'm seated it's at about 75%- just like I thought). It's called miracles. It's called spiritneuroimmunology. It's called a will to live.

Wednesday, February 23, 2011

no longer normal

This is a slow moving illness....I'm dying. I've been dying for years.
I'm in heart failure.... I've been in heart failure for (2) years.
I'm working my ass off, trying to be a regular person, getting certified at work. For what? Non of it means anything any more. I'm using my last energies helping people but I'm not helping myself.
But I can't afford to not work.
I'm killing myself, or rather, taxing myself, for what? A paycheck? To live comfortably for a little while. Like I'm really comfortable coming home only to spend all night within a 7 foot radius of my O2 compressor. G-d forbid I have to go downstairs to get something to eat.
Yes, I'm having a bad day, a bad week. Work is not worth it anymore. Without my boss there, I am the senior person on the team and I'm breaking quickly. This is my life, not just my mental health.
Decisions have to be made fast.
And I have no energy.

My respiratory therapy therapist is coming tomorrow. Curious to know my actual sitting O2 readings because if my mid-morning slump without O2 at work are any indication, they're low. My eyes have petechiae every day now when I'm not wearing my O2. I don't like this.
This is too soon.... I thought I could have at least another year at work (ok, I'd sell a part-time position by summer). But with the way things are going, the fact that I'm doing case notes at at off hours because there's NO time I feel like I can't keep doing this. I'm just having an all round sucky week of working overtime, having NO energy and no ability to do *anything* and wondering what I'm doing and why.

I guess it's hitting me just how sick I am and how I can't really hide it anymore. The thing is, I don't think I was trying to hide it so much from others, but from myself. And as much as others may not be totally aware of it, I am completely aware of it now. I can no longer hide it from myself. And when I can't fool myself, it's bad. I'm tired. In all the years of writing I've never used the tag "tried" (I know I just checked) and today I am tired.
Not of living
just of working so freaking hard to catch a breath, to be "normal".
I can't be measured by a regular measuring stick anymore. I need the "disability" or special stick to be measured by. I give-in, I can't

Sunday, February 20, 2011

O2 compressors and mobility

I had a really bad day yesterday. Not only was I numb in my limbs, but they were so, so cold. Perhaps it didn't help that the weather from just they day before was like a mild spring day and yesterday's weather was cold, very cold. Perhaps that's why my fingers, hands, wrists, feet were so cold. Except that when I got home and hauled ass upstairs to my O2 compressor did warmth return to my extremities within 10 minutes. Yup, I'm oxygen deficient.
So, I've been looking at portable compressors online.
My resp. therapist hasn't been by in a bit. She was due for another visit at the beginning of the month but that wicked snow-storm made her call and cancel (said she couldn't be here by the time I needed to get to work, that it would be at least an hour - and I can't miss more work). I saw the price of the 50lbs compressor and was shocked at just how much grief I get from the company, insisting if they don't get readings my funding will be cut. Really? At $800 I can afford to buy the damn machine, I'm not so sure why they say it costs xx much per month to provide the services. Perhaps it's all the tanks? Hm, nope.
So, in thinking: hey I can own my own and even if I have to drop to part-time and lose benefits, I can still be on O2; maybe, just maybe it would be a good idea to look at the portable ones. (Sucks pride in). Part of the reason yesterday was such a bad day was because I just wasn't getting enough O2. I was in pain, could barely walk (a wheel-chair had to be sought from where I was at), and my activity cut short.
This is getting tiring, this being ill thing is getting in the way of life!
So, I looked up the prices of the POC's (portable oxygen compressors) and nearly had a cow: $4,500. Mother of all cows, sick people can afford O2 at home ($800 is really NOT that much) but g-d forbid they have a life and want to go out and about. Never mind the weight of some of them. 19 lbs is not something I can carry around very comfortably. Sure, I am at my all time highest weight (I just had to give away over a half dozen pair of pants because I can't even zip them up anymore: I am so proud to gain curves), but that's still a heavy piece of machinery to be lugging around! And, the batteries only give something like 2 hours of power -well 3-4 hours if you're on 2lpm (litres per minute). Seriously if you only need 2 lpm you're not sick enough to have to swallow your pride and let people see you with a cannula up your nose. I'm at 4 right now. I also sit with about 75% air. I'm very tempted to buy a pulse-oxymeter just to see where I'm at some times. It's good I have my own bp monitor. Pulse-ox's aren't that expensive anymore. I thought they were a few grand, but low and behold I found some for about $100-$300. More affordable than once thought.
I'm thinking more about work. We have a guy who has COPD and my colleague treats him like he's dying. He talks as if he's dying but he is not cyanotic, does not pant going up the stairs and does not need O2. Observing him the past few weeks has made me question if I should really be working. I've thought about it before, but not this seriously. I look at him and think, if I'm sicker than my client and his counsellor (not me, I refused him: too close to home) is telling him work might not be a good idea, then what the hell am I still doing there?
Working.
Earning a living.
Using my mind, my talents, my passion.
Helping people because I've had some help me. Giving back.
What am I supposed to do: sit at home and eat bon-bons? I can't. I don't have the luxury of being independently wealthy. I'm still married and therefore won't get disability and technically (law is the 'technical' part here) the (ex)wife should and is expected to be supporting me (according to disability). I'll let them take care of that. I have no energy for this.
Anyway, work is something I am reconsidering only because my boss was let go this week. So, of course, I'm back to running around with my head cut off, doing little tasks that have nothing to do with therapy. Some of the clients have even asked if I'm the new manager (guess I can hold my own enough to look like I could be). I gave it some thought, but I can't keep up, and I would miss doing the group and individual therapy - which, some days can be very aggravating, but other days I see miracles where one would think there's nothing to "redeem". Those are the days that restore my faith in human change and potential.
That's a one-day-at-a-time situation that I have no control over. The only real thing I want is to see 38. (OK, I want to see 53 but that's still another 15 years...I don't know anyone who's lived with heart failure for that long. It's making me sad...very very sad.

Saturday, February 12, 2011

don't get it

People don't get what it's like to be almost 38, in the prime of life, but preoccupied with death all the time. It's not like I choose to think about it, it chooses me. It's what's on the mind of a 78 year old, not a 38 year old.
My world is getting smaller, not bigger. At a time in my life when I'm working a decent job, I should be looking at moving forward, not scaling back. I am starting to find ways to sell my position as part time. Others my age would be looking towards getting a management position, or at least, promotions. I have the means to be able to travel (thriftily or course because I still only work in social services) and my physical world is getting smaller, shrinking with elevation, distance, air quality. Israel has been "canned" my my Dr. Cardio man, and now my back-up trip to the desert has been too. Who knew that it was 6,000 feet above sea level (at it's lowest points) and 12,000 feet above sea level at it's highest points. So great, I have a week off from work with no where to go: I could always drive to NYC, again. It's getting boring, tiring and frustrating that my world is shrinking.
And around me it shrinks too. I can't be out as long, I don't have as much stamina to do social things, especially if it's on a weeknight. That's almost out of the question. On weekends I have choose which activity gets done: laundry or brunch with friends, because g-d knows I no longer have enough energy for both.
People my age are making plans, having a future.
I am looking back on my life, realizing I gave the best years of my life to a woman that didn't even appreciate it. Someone so special is sitting in front of me, wanting to have a future with me that I probably can't give her (I've been reading more about expectancy and the reality of just how old "old" is for someone with TA). I've finally found someone that speaks my language: not just literally (francaise) but financially, spiritually, all the areas you could think of; and she gets the short end of the stick. I just hope the Ex knows how lucky she was to get my best years. Chances are she does not. And it no longer matters, it only saddens me that someone that I gave that gift of life to couldn't appreciate the true miracle and gem that I am.
And in case that sounds egotistical, I remind you that I am about to be 38, was never supposed to live into adult hood, am unrepaired, and, there are less than a few dozen of us over 35 still alive. Now I dare you to accuse me of being egotistical. I know how hard it's been to live in this body, not being able to breath some days, do regular people things (stairs, work, walk to bus stops, walk and talk with an O2-sat rate of 78% room) with an irregular heart. I dare you to give up 1/4 of your oxygen intake and still be expected to speak fluently and without mistakes in English, be expected to remember things, function like a normal person. If you can do it with 25% less air and nourishment to your brain, then please please tell me your secret. I dare anyone to embrace heart failure and give up your life at it's prime - yes, most people will do this, when they are old enough to be preoccupied with death all the time; not when they're in the prime.
When Thomas was taken/left this plane I wrote about how un-natrual it was: that parents are supposed to go before children etc. I'm back at that thinking lately. In my prime, not preparing for death. It's a confusing time because on the one hand I am (tyring to act) normal and keep up with full time work, certifications, life goals etc. I play the living game: looking forward to the future, shopping (as if I'll need things in the future), making plans etc. But all the while I might as well be 78: wrapping things up, looking to down-size, not start new things, not plan ahead, but looking to purge.
It's no wonder I don't know if I'm coming or going lately. No wonder at all. My stages of grieving are never-ending but always, always a part of my life. Just when I get comfortable with one stage or plateau another limitation/reality is made apparent. I just can't keep up.

Wednesday, February 9, 2011

1 month to go

In one month from today it'll be my birthday, and since the 2nd/3rd time in the er this winter I haven't had a day without thinking about death.
The anxiety about it is killing me - no pun, really. I've asked my acupuncturist to and anxiety points to the treatment. She adds that anxiety is also physiological - the body panics when it doesn't get enough nutrients, O2, etc. etc. Well then, that all makes sense because my sitting O2 sats (at work, without O2) are low and getting lower.
I know I have a tendency to worry but this winter has not been an easy one, huffing and puffing at work; not having any energy for anything after work; not being able to concentrate and even fighting fainting spells in sessions (good old trick: drop the pen, forces your head down to get blood back to it). Yeah, I'm revisiting this need to work thing... but it's not an option right now.

I suppose I could start looking at the good: I never in all my life thought I would see 2011. To the point that when I bought my car last year I only bought it's permit sticker for one year instead of two because I didn't want to waste the money. Well, yesterday I renewed my plates (and licence) and wondered why on earth I didn't (it's not like me, I tend to be organized when it comes to stuff like that), that's when it hit me: I start thinking of "no future". Just like 6 months ago when I saw that a new walmart would be opening up near my place and the opening date said Jan. 2011. I wondered if I would see it open. I thought the same when I heard that we are getting Canada's biggest Ikea in the spring: would I be around to see that. Well, I still don't know about Ikea. Sure it's only 5 months away but I learned as a child to never, ever count your chickens before they hatch. This is where I learned a thing or two about ICON-ing. And for that alone I am grateful to my parents. Prepare for the worst and don't bet on the best until it's secured.
That doesn't make me a pessimist, au contraire, I feel more optimistic than I have in a long time (not about my health, but life, it's wonder and beauty).

Monday, January 31, 2011

keeping up...

I haven't had a chance to write in a while. I just don't know how to say what I have to say. Perhaps my thoughts and words are following the season: getting frozen in the mid-winter January freeze. I know many of us northerners hate winter. I especially hate them - some days it's too cold for me to breath. Other more mild days it tends to snow making walking that much more difficult. I have to admit, that I am spoiled. I drive. Everywhere. I can't easily manage without my car. Even though my current living situation is quite close to a bus stop (for healthy people) it's a trek for me. Just the lifting of legs above snow levels gets me out of breath, never mind the cold on the lungs etc. etc.
So it's no surprise that when it snows and I can't get my car out of the driveway because there's no one to shovel the mini-mountain leftover by the plow, I don't go anywhere. I can't. I don't have the luxury and physical freedom to pick up a little shovel and dig a small section for my small car.
I wish I had that freedom - that privilege.
At work we've been having discussions of privilege of late. The newest edition to the team is someone of different race - I'm not sure the politically correct term but I know it's *not* "African-American. She is neither of African ancestry (her parents' parents are from one of the Caribbean countries) nor is she American. I would just call her Canadian, but that doesn't help for all those that would assume whiteness. Anyway, I like her, I like our discussions, and how privilege isn't just about skin tone, but also ability, orientation, marital status, etc. (she is also divorced and knows what that *really* means in our society that looks down upon divorced folk without ever actually admitting it. It's all so implicit.
So, here I am, a supposedly upwardly mobile semi-white (my olive undertone comes from both the eastern European Jewry and the Metis mix) and definitely (over) educated, non heterosexual, and non-able-bodied, single (soon to be divorced if my Ex ever decides to one day participate in this process) chick trying to play the part of someone who can measure up. Because much of my "oppression" can be nicely tucked away and hidden (insight thanks to lovely check-ins with my new coworker), I look and seem completely capable and therefore standards are not lowered to meet my actual (physical not mental) performance abilities. It's like some women who want complete equality, will tests (in the military physical training) under the men's' standards just to show they can measure up. At least that's what's been pointed out to me by the many professionals in my life: my Cardio man, my therapist, my family physician and even the work's chaplain. All telling me that perhaps it's time to test (function) on my (lowered) level than try to meet and operate at healthy people's standards.
That's hard for an Ox with a Taurus moon to swallow.
But I'm beginning to have no choice in the matter.
My work is starting to be affected. Sure I now have a coworker to share in the stress but for some reason it feels like we have even more work (perhaps because our boss seems to be away a lot, perhaps because we are running at full capacity - I'm not sure). Either way I'm not running up the stairs anymore, I'm raising my feet when doing case-notes (can't during a session: could you imagine going to a therapist whose legs are up and you're trying to disclose your life to her? Not). So there I was, feet raised, taking it slow just typing away my case notes when out of the blue the tingles came: I am so proud I can identify each and every sensation and where it will lead: the tingles were in the core and I knew that I was about to faint. And so as my head went trough my legs I apparently reached for my office-mate's hand. Yup, no warning, no nothing, just like that.... I chalk it up to heat. I thought I loved things warm: my coworker loves to work in a sauna. I've had to stand in our cold windowed-in porch (that sits at about 4 degrees Celsius, no joke, the windows can't even shut they're so old) just to cool down. I hope these are hot flashes and not my blood-pressure bottoming out. I don't have my BP reader at work so I don't know.
I've considered taking the thing to work... more stuff to lug around. I'm already taking more pills than I ever wanted to -albeit some are homeopathic, but still!

Ah, the joys of being invisibly disabled: you're expected to measure up, period. And if you choose to tell, you have to deal with the pity-looks because people just can't deal with terminal illness.

Thursday, January 20, 2011

"magical thinking"

So I went to see a one woman performance called the year of magical thinking the other night. I went out of curiosity. I saw the blurb on YouTube, Joan Didion herself reading from her book, about her experiences with grief and loss and death. In the book, she wrote about losing her husband - she wrote that book in the first half of the year after his death, while her daughter was recovery from "septic shock" is what I understood. During summer of that year, her daughter did not recover and also died. That's not in the book, because she wrote it very quickly after her spouse's death. I suppose when someone close to you dies, you do something to fill those empty hours, the loneliness, the missing. She is a writer to begin with - apparently one that made a good living to be able to fly back and forth from Pacific time zone to Eastern time zone. And that's the exact excerpt in her piece that caught my attention, when she spoke about him being dead in eastern time zone, but not yet in pacific that made me go see her piece. I happen to be looking at the performance on YouTube when all sorts of things like this crossed my mind. Didion calls it magical thinking because she says, according to her own past anthropological research, different societies' thinking about death operate on a magical or folkloric type of thinking such as (my own): "if I don't pick up the phone, then it's not really that call that I'm getting" or "if I just support my wife hard enough, this won't actually end badly" - yes I had magical thinking as well: for both the death of my step-son and the death of my marriage. (And yes, the divorce books I'm reading now talks about divorce as a sort of death, one that's swept under the carpet by all except those that have been through it- they say in death people send best wishes, warmth, support, but not in divorce. Just what I felt all last year-see below).

And here's the thing, I'm quite aware of that magical thinking - to the point that I didn't really want to accept how over my marriage was last year that I didn't read any of my divorce books that I equipped myself with. Well, now I am and I'm realizing that had I read those books sooner I would have done things differently: not to save the marriage, but to save myself more heart ache in the interactions I had with my ex during the spring/summer. That attempt at friendship would not have taken place. And there's that magical thinking again: if we waited to build on a friendship, would we be speaking today? Who knows, but maybe. The thing about magical thinking, I think, is that it's classic denial. We go through all sorts of 'ifs, ands, buts'. Some people say that's characteristic of the bargaining stage - I would agree to a point. If you're bargaining, you still haven't acknowledge what is - potentially. It's just my opinion. But this is what my lived experience tells me. It's what I see in my job. When a client lost their wife a few weeks ago they walked around in a daze for a week - even though this death was months in the making (illness). Lots of magical thinking there: if we went to the right specialists, if we caught it earlier, if...

Either way, when I listened to what Didion had to say about losing her spouse and then losing her child in the same year, I could only think of one other person that would understand: my ex. so I invited her to the performance, as an act of good faith, as an act of goodwill with no motive and despite all this time and all this work I got no response back (not even a polite no). Yes a year and a bit later and she's still using silence as a weapon. Thing is it no longer hurts me. This wasn't for me, but to share in the humanity of the lived experience of death, grief, loss. With no motive. The silence no longer hurts me - I'm not the one that losses out.

So I enjoyed Didion's piece anyway. If I had time I would even read her book. But I don't have time, and I don't think I could revisit the description of the waiting and pacing and waiting, all over again. It was a treat the other night - to witness the humanity as grief - as she says you don't really know grief until you meet it. And you will, because this too will happen to you - the circumstances and details will be different but it all turns out the same: someone you love will be ripped from you, your life, this planet. I think that's what I've been writing about all along to remind people and myself that life's journey WILL end in death: not "if I die" but when. We cannot escape mortality. No matter how much imagining, magical thinking if you will, I do, I cannot imagine where I'm going, how it will happen or even when - no matter how hard I try to control the outside circumstances. And that's one thing I completely related to Ms. Didion: her need for absolute control - which also came through "magical thinking". It's that description of her saying "if only we were at the good hospital, our hospital" or "after scouring all EMT records and learning all the lingo and realizing they could have done..." or my own magical thinking that goes something like this "call so and so, then call so and so, then my heart goes here, and don't call those people and..." all trying to control beyond life itself.

And then reading about some TA's who are in their 40s and still alive. Thinking and calculating: if I save energy (my mom would say that so much) can I bank it and add it to my life - to give me more time.
That's my magical thinking.

Tuesday, January 11, 2011

Happy New Year

So this is my first post for 2011...and I have nothing to say!

Well nothing of great importance. No more visits to the ER - now to report of for this year so far (kieneinhore). My new goals are quite trite: go a month without and ER visit. That's January's goal.


In other news, over the years I've had people contact me with TA to say that hey, they too are still alive, unrepaired and exist. And that same thing happened just the other day. I opened my email to another gentleman in the US who is 42, yes 42! That's all I'll say because it's me who's chosen to go (semi)public and not others but this makes all this writing and reflecting worth it. If someone else says "yes, I'm going through that too" or "I know what you mean, I think of death a lot" then I'm validated and so are they. Our experiences are real and need a voice!


He gave me some awesome stats (hey, if you're reading this could you send me the link). He said that there's only been something like just under 300 live births of TA in the past 70 years and of the 300 something like 52 of us are still around! So, even if that's just the US, when you add in the numbers for Canada it's still less than 100 (our population is like one tenth that of the US).

Not much else, it seems I just don't have time for much, working full-time and going to bed much, much earlier. Winter taxes me out so I'm at home on the O2 machine pretty early. It sucks but it's nice to have a slower pace at home since work is still so understaffed.