Straight from the H'art

well hello there!

2012-01-17T20:22:00.000-05:00

Happy new year all!
I've been distant for many reasons.
First, so much was happening in my personal life that I couldn't keep up. I moved from my 3-story house to a bungalow. I got remarried. My spouse had major surgery. Now work is challenging again.

But through all that the thing that probably kept me from writing was a connection to someone else in the US who told me about stem-cell research. Thing is, this contact more like 'sold' stem cell to me. The language used in the emails was very "sales-pitchy" in that used-car-salesman sense. So I did my own research, contacted my cardiologist and the end result is that he just doesn't want to see me waste my money. Yes, it would cost me MY money. That's what happens when health care becomes a business. Either way, he said that the cost of those "treatments" would not necessarily outweigh the long term potential problems. Sure one will feel great for a little while but then crash and burn even fast.

So I stopped writing for a bit. I do appreciate links, information and access to treatments I may not know about but I can't stand snake-charmers. I have a moral value that's very much Canadian (or socially democratic): health-care is a right-to-life and is not supposed to be a business. It's immoral to sell hope. (Here I am not referring to "right-to-life" in the religious right sense.)

There you have it, my first post of 2012.
Oh, by the way, I had an annual respirologist visit last week (to renue funding for my O2) and my numbers seem to have gotten a little better. Now, the respiratory therapist was new (to me) so had no history of my numbers, but I recall what my room-air sats are and my O2-air sat's are and it seems I've improved. La femme francaise has also noticed a difference this winter: my hands and digits are not as purple (mind you my acupuncturist has been working on some circulation points directly affecting hands/feet). I don't feel as out of breath. My vision has also improved (hence my glasses Rx will be changing again).
Not sure how heart-failure can get better but, this winter (so far, kinahore) seems to be better than last.

11-11-11

2011-11-11T10:44:00.001-05:00

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.

spinning 'round and 'round we go

2011-10-07T16:05:00.002-04:00

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.

2011-09-26T13:29:00.001-04:00

not sure what's going on.. trying to publish my recent posts and having problems. testing on another computer.

shifts

2011-09-16T15:58:00.005-04:00

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%.

Counsellor a physical job?

2011-08-25T21:26:00.007-04:00

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.

My house, the manor

2011-08-20T19:44:00.006-04:00

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

2011-08-20T19:31:00.004-04:00

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.

nurse is an idiot

2011-07-30T21:53:00.002-04:00

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.

phone call - what now?

2011-07-28T16:21:00.004-04:00

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.

weeds got the better of me today

2011-07-25T21:40:00.003-04:00

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.

6 weeks of stairs left!

2011-07-22T23:27:00.005-04:00

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.

the sea-turtle: my totem animal

2011-07-17T21:46:00.004-04:00

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?!

long weekend

2011-07-04T21:04:00.004-04:00

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.

chronic pain

2011-06-24T18:04:00.005-04:00

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.

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

2011-06-16T23:41:00.006-04:00

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.

just getting on with it.

2011-06-13T20:27:00.006-04:00

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.

itchy uterus

2011-05-27T22:56:00.007-04:00

My insides are itchy. I finally decided to take measures against my endometriosis and break down and let technology help me. At least I hope it will be a help and not a detriment. I got an IUD installed yesterday. It took me about 4 years of hemming and hawing - researching, changing my mind, consulting 3 dr.'s one pharmacist, etc. but I have had enough of the pain so I decided to go for it, even though all the heart-patient warnings were bolded and highlighted. I decided to take a big leap and do something I don't always do with western medicine: I decided to trust my doctors. Dr. Cardio man said it was ok, even after I showed him the warnings. He's in the heart business, not the gyn-business. My obgyn is not in the heart business, but between the 2 of them, I caved.

So, we will see if this thing will help me. At bear minimum I'm hoping that all the side-effects and warnings won't happen. I asked the Universe to give me a break: I figured, I've had enough given to me to deal with that I'm due a break. at least.

This wasn't even the most difficult thing of the week. I'm pretty tired, spending up to 2 hours a day of my time commuting. I brought the cats and myself to la femme's a few days ago because of nasty carpenter ant invasion. They moved in, I moved out. I don't know how people live so far away and spend their time commuting. It's tiring. But the air quality in this house far surpasses that of my house right now. I returned home tonight, over 24 hours since it was fumigated, and after only 30 mins of breathing that air I became nauseous and needed to leave. I'm not quite sure how someone is expected to sleep in their home the same night of fumigation. They guy said it is safe to return (according to government regulations) after only 4 hours. Whatever. Although I'm far from life (on the other side of the city) at least I have the ability to stay away until I can safely breath the air. I was just thinking the other day turning off at the end of this sub-urb how not even 15 years ago this area was all field/farm-land. La femme likes to say her home is still part of "the city" but as someone born and raised here I have fun reminding her that this was a township not long ago! I feel really isolated out here, I can't just meet a friend for coffee. If I have only 90mins of energy I don't want to spend half of that total time on the highway. At least in town I was no more than 15 mins from anyone (except la femme).

Ah small humours. And we need them now since the other emergency we've been dealing with is the fall-out of the most recent federal election. Not even 3 weeks in power and the evil PM has decided to continue the war that no one wants. And it hit home: la femme received deployment commands (that was the family emergency) late last week. We're still dealing with this so I cannot disclose any more, but just another 'thing' to add to the week. But there's no way that he's taking her away from me!

I'm exhausted, crampy, cranky and thankful I have portable O2, and that la femme is strong enough to have carried my O2 concentrator from my house to hers. I can't live without O2 anymore (then again, no one can live without it!).

Desert follow-up

2011-05-22T10:22:00.004-04:00

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.

breaking down the wall

2011-04-30T18:08:00.006-04:00

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.

back from the heart-hospital

2011-03-29T20:15:00.005-04:00

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...)

I am home!

2011-03-27T00:18:00.007-04:00

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.

hell

2011-03-24T18:28:00.004-04:00

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!

trapped - travel II

2011-03-21T02:32:00.003-04:00

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.

vacation II

2011-03-20T12:51:00.004-04:00

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

2011-03-20T01:04:00.004-04:00

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.

march- big shifts

2011-03-16T08:10:00.008-04:00

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....

going to the desert...

2011-03-06T21:55:00.005-05:00

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.

It's March

2011-03-02T19:06:00.008-05:00

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...

Respiratory therapist visit

2011-02-28T21:30:00.001-05:00

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.

no longer normal

2011-02-23T21:47:00.006-05:00

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

O2 compressors and mobility

2011-02-20T17:07:00.004-05:00

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.

don't get it

2011-02-12T19:32:00.005-05:00

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.

1 month to go

2011-02-09T21:05:00.003-05:00

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).

keeping up...

2011-01-31T19:52:00.001-05:00

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.

"magical thinking"

2011-01-20T17:44:00.005-05:00

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.

Happy New Year

2011-01-11T14:43:00.004-05:00

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.

disclosure - work

2010-12-30T13:48:00.005-05:00

I think it might be time to disclose at work. I did not want it to get to this point but life here at work is really impacting my health. It's been 3 months since our second counsellor left- with no new hires. I've been doing the job of two people and it's getting to me. It doesn't help that my office is on the second floor. Sure I can limit how many times I go up and down those stairs, not so bad. But when (if) another counsellor ever gets hired I'll be going back and forth from the basement office to the "classroom" (main floor) to my office on the second floor. Not going to happen, hence I've got to out myself.

So instead I went to the only confidential staff person on sight to feel out my outing. He cannot say anything to anyone, including my boss or HR: He's bound by G-d. And of course when I told him what I have (I simplified it and said heart failure, none of the big/birth words), his reaction is exactly why I haven't told anyone including my boss. When one says heart failure, one knows what that means. Immediately he said "if I was your boss I'd want to know that I can't be calling you down to my office every hour (between clients and classes) only for you to have to do those stairs again". Ok, but here's the problem: this is neither government, nor union run. I have no job security. Essentially the only thing that's keeping my job secure is that there's no one else here right now to do what I do. And I do a lot, and it's getting to me, because I'm becoming more limited in what I can do. I am only getting by this week because there's no programming. It's "professional development time". Except in adulthood PPDay doesn't mean a day off, it means updating curriculum and files and cleaning out my office.

Before I went to see our chaplain I had to stop half way and take a sit. I couldn't make it across the building. The painful sloggy edema made me stop and rest. Even with my legs raised (only by 12") under my desk I feel like my feet are planted in a sea of water. This isn't fun anymore. I'm so glad I said no to another contract. The same people that call me every year around this time to do mental health research called me last week, and even though I was working full time last year, I took the contract anyway. I packed the hours in during the weekends and mornings. This year, although the money is tempting (could pay for my divorce), I finally said no to work. Yes me, my father's daughter. I need to live a little longer, please?

saying what I mean

2010-12-26T17:00:00.003-05:00

I'm at a place I was almost 2 years ago, emotionally anyway. Well, sorta. Two years ago when I was in the "heart hospital" I was given new to me information: that I was now in heart failure. And so even though it's difficult to tell "how long" one has, they did give me a range: a few years left (whatever few means is up to the universe, the individual etc. to interpret). So here it is a few (2) years later and as much as I'm working full time, no longer walk with a cane, etc. I'm facing new limits - because of where I'm at.

Two years ago it was a bit 'easier' to accept what was going on. I love life, I don't ever feel ready to die, or to tie it all up (who does?) but I could come to some sort of peace inside knowing that I was with "the life of my life" (at the time) and felt that ok, if it's coming, at least I've been able to have 8ish years with her (at the time). Although there was eternal love, we weren't that happy (no surprise). Not that any of that made it easier to accept limits and eventual death, but it did in an eery kind of way.

Today I'm not in the same place. I am happy, very happy, in a new relationship that has barely had time to get off the ground and am feeling very robbed. At least if the end happened with the Ex, I gave her many many years. With la femme francaise I feel like I am abandoning her. I have a great sense of guilt. I know it's her choice to be in a relationship with me at the late stage of my life. Every time she chooses to show up and stay - not out of pity. There's love: kind, wholesome, giving and patient love - on both our parts. It's easy. And it's sad. So soon in a relationship with this many restrictions - shit we haven't even discovered the world yet. My Ex got my "best" years (physical health). A while ago I would have been very resentful over that. I'm starting to come to peace with it. It still feels unfair, that la femme francaise gets the scraps, the left-overs with growing limitations. Right when we're at the beginning of a relationship, the ending of my life is forced to the forefront (shit, 2 ER visits in 5 weeks with her?!). Anyway, my Ex knows how I feel about her - I still love her, even though we broke 'it'. How can you throw away 11 years?. That's the thing with hospitals and growing symptoms, you say what you need to say because with no remission for what I have, one never knows. So even though it was la femme that brought me, it was I that called the Ex to come because I had some important stuff to say to her.

ER take 3 for 2010

2010-12-26T16:45:00.004-05:00

I'm quite tired of being sick. There are less moments in my life again where I'm not affected by my restrictions in one way or another. Trips to the ER are in greater frequency these days. In fact, I've been there 3 times the past 5 months. With my most recent trip being last night. Last night's trip was the fastest of all: everyone else was busy eating xmas dinner, too busy to be getting into MVA's or hurting themselves or others. So within 3 hours I saw a cardiologist. That's fast- especially for a specialist.
I'm not quite sure what's going on since I no longer have my ex to interpret, although she did join us at one point. La femme francais brought me: new symptoms (that I was told to look for over a year ago) popped up and caused great concern. So, in the end, I was almost admitted to the heart hospital. They wanted to admit (just like in January almost 2 years ago) but then the cardiologist made a deal with me: I take the next few days off (done, I have them off anyway) and stay home and *rest* like for real rest, not my kind of 'ya ya I'll take it easy' kind of rest. And you know, I can't do much more than anything else right now.
Things are continuing to have difficulty to pump - my heart is having a hard time sending the blood where it needs to go: it's starting to back up. My neck vein was distended - a sign. I hate signs. My kidneys are having increasing difficulty filtering things out: more edema, gout is waking up again. So far no water in the lungs. Thank g-d. really, thank the universe. I don't want to drown to death.

My blood-pressure was really high (for me), my pulse rate too low (for me) and when measured my blood potassium level was higher than high. It was on condition of that returning to a manageable level that I was released around 8 in the morning, after an uncomfortable night.

Being xmas and all I was all emotional - xmas is not my holiday, but there's somthing about being in the ER, with two very important women by my bedside and more new realities about my health. At one point each love-interest were standing on each side of the bed. To break the heavy nature of the moment I joked that I once was the ghost of xmas past and the other the ghost of xmas future. How lucky I was to be surrounded by so much love - even love gone wrong. But how sad I was knowing how precious time is.

The same nurse recalled me from 5 weeks ago: the young one in heart failure with the girlfriend and wife!

Cardio appointment: not stable

2010-12-17T14:38:00.004-05:00

So I had my winter Cardio appointment the other day. It did not go well - well... it did, in that the results of what my designer drugs are doing are fabulous. I can work... yeeee!!! But, I can't travel... booo!

Apparently I am not stable enough to travel. Which sucks because I have another item on my bucket list planned: Israel. And now Cardio-man is saying I can't go. He's saying that the last few ER visits mean something (even if some people think it's manipulation: what do they know, they are not cardiologists!). He says that the stress that's getting to me does pose a real danger. People have had real heart attacks because of stress, people have died because of stress. He wants to see the stress levels decrease, or at least it's impact on my body lessened.

That recent trip to the ER, with chest pains etc. - that same trip that I was accused of manipulating - was a concern for Dr. Cardio man. To him this is all serious. Stress can kill- I know that, commercials tell us that, most people know that, yet some medics think they know everything because they work in medicine for 2 decades. I encourage any who even thinks for one second I use my health to milk support to spend 10 minutes with my Dr. Cardio man - an actual doctor, a man who's spent his life dealing with cardiac patients. Not some judgemental folks who have nothing better to do than judge me for what they do no understand. Just 10 minutes.... that's all I ask!!

Yes, I am astounded. I am amazed that others who are healthy enough to not understand, judge. Judge me, my need and desire to have a tribe, to experience that sense of belonging that others so freely get, to experience that sense of living without limits that most people take for granted. I don't think I'd be questioned as much if I was in a wheelchair or walked with crutches everywhere - in fact, people might actually be politically correct and try to avoid judging or challenge themselves on issues of dis/ability.
But I have limits and needs. My limits are real and I can't do everything alone.

On the one hand I'm being told I'm not stable enough right now - these episodes are taken seriously yes, but. On the other hand I'm told to put the trip off until I'm more stable. However, I'm also being told that time is limited. It's been almost 2 years since I started counting full moons (since I was admitted to the heart-hospital). I am astounded where I'm at today. I appear healthy, and yes, I can work full time again, walk without that cane, have less edema etc. but the Dx hasn't changed. I am still declining. I still have more and more limitations imposed on me but now with less and less support. I continue to ask questions. There are no clear answers. He only continues to tell me that "I'm a pioneer and they don't know" but that my recent trips (to the ER) tell a lot.

So, I could go (to Israel) and take a big risk. At least if I die, it will be in Israel - I could be buried in my spiritual homeland. If I don't go and wait, I keep declining and may never be stable enough to live out my bucket list.

Or I could go, and nothing could happen. It's a really big risk... risks like this that "normal" people don't have to weigh.

death and the sacred wheel called life (recalling Thomas)

2010-12-03T10:17:00.012-05:00

As I write, Avro Part's Speigle im Speigel plays in the background. it had become my quick release, but now seems to make things all the more bitter sweet. Check it out if you've never heard it. The most beautiful piece of music in the world (piano and violin).

Experience has taught me that life is suffering... I could have discovered that without painful experience by reading up on Buddhist philosophy. Oh wait, I've done that. It doesn't sink in until you really live it, or bear witness to it.

The other day I was in the Bay - I don't usually shop that much, but I was there nonetheless. I had to walk through the boys section to get to where I needed to go and sadness struck me as I recalled shopping for holiday gifts for Thomas. I think about him often, pray to him, have his picture on my alter or by my bedside, often wondering what he's doing in his spirit form, and often feel him visit. So do my cats. They talk to him I'm sure of it.

His entire death process is coming to the surface again as a client of mine who's loved one is in the process of dying describes what and how this person presents. Even if my client is in denial, by his descriptions, I know she is not long for this world. Oddly enough it is no longer triggering - Thomas' whole process is in my heart, especially the night I witnessed spirit take form. I might have written about it, or I might not have - with all the grief I didn't write much about the beauty of death. But here goes.

One night, probably about 2 or 3 nights before his final breath I sat between my (ex) wife's legs reading from my orthodox prayer book (of all things). The room was dimly lit and Thomas was sleeping (or so we think). The sun had not yet gone down but was probably on it's way. The tree outside his window would often obscure the view of the sky. He had been doing his usual choking and coughing that day. His medication at this stage already at his tolerance level: they weren't lasting as long and giving him relief. He wasn't choking or coughing much this particular time I'm describing. Everyone around was sleeping or in another room. (or, if they were around I was paying absolutely no attention to them as I was deep in prayer, meditation, reflection. My wife was laying sleepily on the back of the chair as I leaned a little into her. I only barely noticed his more favourite person in the whole wide world walk into the room. As she sat down beside him, a peaceful stillness and calmness entered the room like breeze flows through leaves. It seemed that he had waited for her because when I looked up from my prayer book I witnessed what I call a miracle. Science can call it whatever it likes but at that moment this young man looked up at her and smiled. Now scientifically it could have been a twitch, or synapses firing, but they don't fire without some sort of stimulus. She was his stimulus - enough to make his face "twitch" into a smile. A peace washed over me as I realized that no one else caught this - or at lest that's how fixated, how still I (and the room) was. Some of the ones in the room were asleep. It was one of the first tranquil, peace-filled moments being with the in laws. It was the most sacred exchange between cousins, best friends, soul mates that I'd ever witnessed. (and it's also that moment that I got in shit for later on when mother in law noticed how cuddled into my wife I was, calling my lack of distance inappropriate and sickening. Yah, the lesbophobic pounding that came afterwards was more than I could bare, but suck it up for the wife I did. Ironically the moment she complained about, was in prayer reading from my orthodox siddur of all things!)

That stillness I feel now and again, and have felt before in my life but not as prominent as when Thomas "awoke". His face, the light glowing and radiating off his pale skin, his blue eyes gleaning towards the girl, all were so angelic. No tubes, no illness, no coughing or pain. Only peace.

It's that stillness that covered the counselling room as my client came to a quiet acceptance of this pending death that I felt the sacredness of the work that I do. To bear witness to someone else's turmoil, having been strong enough to go through my own or carry my loved one, my life partner (at the time) through all the bullshit of in laws, the heart-ache, the sorrow and grief. I am no longer with her, we no longer talk, she no longer wants to be wed to her partner in life, but I journey with others and realize that this is where I need to be. I have given enough of myself to those that do not nor will not recognize that gift.

Endings are full of sorrow. I am full of my own grief and loss over losing a life mate, a soul-contract. Our ugly divorce process makes me wonder where that tenderness went. It makes me wonder how love could turn so ugly, and when I think back to that "miracle" in his room that night, all I felt was family - not the "family" concept of my in laws, but family as in my step-son on his death bed, peacefully leaving, and my wife holding me holding her.

I have no family now. She is gone, my siblings and I have not spoken in a year. My parents. when we speak sporadically, continue to shame me for my broken marriage. I no longer contact them- why call to be shit on? I was raised catholic- you don't divorce, in fact, you don't question your religion, sexuality, faith, or anything else. I, by virtue of following my heart, soul and spirit by choosing my own paths have, according to them, rejected them. And so they continue to reject me. It is especially painful during (Jewish) holidays. I have no family to go to to light candles with, no one to cook latkes for, (or create a passover Seder), it's lonely being a single (lesbian) Jew. Yet I light my hanukiah anyway because it's about me and my Creator - no matter how lonely it feels.

Death isn't just in losing a life to the other side. The death of family, of that sense of 'home', and of stability I once had. Perhaps it's because I am alone yet again, a year later in a very big very empty house. I am finding I am avoiding being at home again - the same behaviour I employed last year to get through the first few months of being in "our" house". Well Dec. 14th is fast approaching, the day she signed it all over, almost a year since it's been "our" house and I am still having a hard time when it's empty. I was graced with a friend living with me during the summer and fall, but, here we go again! I'm in the same situation, wondering what I will do, getting angry again that I am living a life I did not choose. I recall laughing at the lawyer when we bought the house, signing a clause about "if we divorce". I felt like someone was questioning our love and said to him 'there's no such thing as divorce' in my heart. Who knew five years later I would be seeking my own lawyer!

We are so attached to the containers we call people, but without those people life is very empty, very sad. It's too bad we take "people" for granted.

1 year - a good anniversary

2010-12-01T21:26:00.004-05:00

It's my 1 year anniversary: at work. I can't believe I've lasted this long. Not because I don't like the job or I might not have fit but because I didn't think I would have the physical "stamina" to work full time at this stage in my life. Of course the year has witnessed 2 trips to the emergency room, lots of sickness when I first started working (I worked at an out-patient street level for the first 9 months) and a wicked summer cold/sinus infection. Not so bad for someone who's living with/dying from heart failure. Not so bad.

The past 3 months of my job was supposed to be more "cushee" moving to a quieter residential setting but that's where I've been run off my feet, being virtually the only counsellor for the entire time minus 3 weeks. Someone started, then left. Just not the right place for her I suppose.

I'm grateful that my benefits kicked in, covered my designer drugs and continue to provide me with massages and other stress relievers since my work stress has increased due to shortage of staff. I'm hoping that the new year brings new help - really. I'm working late and running the minute I get in. It's really not good for my health, as I learned with my latest trip to the ER a few weeks ago: stress is getting to me.

When I started work I had lost 20lbs due to my break-up (and 20 pounds on me was a big deal). It took a full year but I've gained all the weight back. I am at my heaviest (original) weight ever - and gaining (I hope). I have to start buying new pants if this trend continues. I've noticed because I am warmer (I was freezing all the time last winter, colder than my regular cold-self), and even have hot-flashes (yes, it may seem too soon, however perimenopause can start even earlier than my almost 38 years old). I've always had blood-sugar issues being hypoglycemic, but now that I am eating loads and loads of food (at work) my sugar seems to crash regularly and harder. It's as if I can't get enough to eat. I'm afraid to check it out because the blood tests require fasting and I can't do that. The last time I tried fasting I was in a hypoglycemic shock by the time I made it to the hospital clinic; speaking gibberish, almost passing out, not making any sense except that I pointed to my medic-alert bracelet. If it weren't for that I'm sure they would have thought I was just another crazy person escaped from the locked ward. So ya, I don't want to fast, nor is it wise for me. Perhaps I'll just keep eating (mmm, food).

I'm a femme, not handy, not able-bodied

2010-11-20T22:25:00.001-05:00

I'm a little cranky today... realizing I don't have much help. I used to live in illusion called community. I think said community really meant being married to a handy-person. I can count on one hand how many of those old dyke friends have called me in the past 4 months. For social or otherwise. And yet I can't do things alone. And mundane day to day shit, shit that just needs to be done. I'm not talking about renovating my home or making things pretty but just shit that's got to be done. Like for example, last month I was gifted with some beautiful Hostas from a friend only to bring them home to realize I can't dig. I can't do it - something as simple as taking a shovel to ground - most healthy people take that for granted - but I just can't do it. I know, I've tried and I get about 2 inches into the earth after much effort. So said wonderful Hostas went to my neighbour: I obviously didn't think it through. I am alone!

And it's in the small things that I notice it. Since I've been left with this house I've rented both rooms to not loose it but the rental just barely covers the basics. I am underpaid at work and normally I wouldn't be resentful because my meds are covered 100% but the past 2 months I've become resentful because I am doing the job of 2 people and nothing's being done about it (well, I'm sure they are interviewing but the applicants have been slim: who wants to do what we do: group therapy, case-management, individual therapy; and be paid peanuts. I digress, my point is I cannot afford to hire plumbers or electricians etc. for the small things that the Ex (being handy that she is) used to do. The basement bathroom has been out of order for over 2 months, same for the dimmer in the basement etc. etc.

And maybe it's because I'm burnt or maybe because I hear through the grapevine community-folk helping community out again and I'm getting so resentful. When's it going to be my turn? Those Wed. nights I'm lugging overweight trash to the curb I think to myself: till death do us part eh? Yeah, 'till she doesn't feel like working anymore. Yeah I was a nag - someone had to beg. Even 2 weeks before our wedding we had a fight: yeah I was sick of doing all the arrangements. From making and designing the dresses to doing the hand-made invitations, arranging seating, thank you cards, arranging the potluck, securing a site, companies etc. etc. all she had to do was show up in said dress with her vows. That's it. Oh and make the ring pillow. I was afraid the wedding would reflec the marriage - oh, and it did! She had it so easy with me. I was her social calendar, I introduced her to everyone I knew, I introduced her to bowling, she married into a house, stability and family values. That's the problem when you just give freely to people, they just take everything for granted and take you down. In the process I gave myself up for nothing but broken love. Not even anything nourishing.

And so now I'm left with a tonne of bricks and luggin out the overweight garbage myself. Someone living with heart-failure luggin out garbage...cut me some slack, today I am not practicing acceptance very well. I'm cranky - I'm doing all the self-care I could possibly do (even had a massage after work today) and damn it I'm alone. It's no wonder my yard has gone to shits. My house is slowly following. It's just too physical for me to do.

they met

2010-11-17T17:16:00.005-05:00

Called in sick today - had to get some sleep today since I did not sleep at all last night because I ended up in the ER - encore. This is part of my norm, nothing to get all twisted in knots about...fear sent me there. Every time a different kind (than past) of chest pain emerges I get scared. The same old same old chest pains don't warrant a visit to the ER, only new ones I've never had before cause concern in me these days.

Perhaps stress is coming out sideways in my life lately. I met with a mediator and my ex last night. Then we went for coffee which in the end turned out good, and that's when the pain struck. Perhaps I got up too fast I don't know but it started shooting out my chest, down my right arm. And the nausea came. I couldn't drive so my Ex took me to the ER, calling la femme francaise in the between times. What a way to meet each other, but in a sense, how appropriate. I'm sure it was civil, I was minding my pain, trying to keep consciousness, and not throwing up. Once the dr. finally came for a visit he asked who the women were and I couldn't help but feel a little funny "this is my soon-to-be Exwife and this is my girlfriend". It's so not like it seems. Then again, I'm getting too tired to care what people think.

Once they said tests would take until at least 4am the Ex handed me off to la femme. At first I did not want la femme there, afraid of the 'drama' that I'm bringing to her very calm, drama-free life. But this is my life, and the ER is part of it, every so often (although I really do have to stay away). According to my Ex, my last night's ECG was much better than when I was in in July for the possibly mini-stroke but not quite a TIA. July's was pretty ugly. That sounded pleasing to all the work I'm trying to do to keep myself relatively healthy all things considered.

I recalled the ECG tech from when I was there almost 2 years ago in January (when I first started writing). I remembered her because of her accent, because she knew what I had. I recalled that in her home country she dealt with Truncus babies when she was (is) a peds cardiac doctor. This is precisely why I don't like the immigration laws: here is this dr. now ecg tech who knows what I have and has dealt with it yet some of the (newer, younger) cardiac nurses do not: what a waste or knowledge! I told her I remembered her and why. She was very nice and gave us a copy for my records (how do you think I keep track of everything!). I hope it made her night that she was remembered. It made my night that I had her again (under the circumstances).

Anyway, once the Ex left my symptoms got worse, I ended up fainting in la femme's arms, and soon after I came to, I ended up barfing where-in she decided to clean it up. There was only one nurse on in that dept. (for 20 patients) and la femme decided to be helpful. That's when I broke down, feeling the epitome of humiliation and vulnerability knowing that the romance was gone: cleaning up some-one's barf is over the top for me. As tears rolled down my face, buried in the bed still burning up and fighting consciousness I asked her to leave. Ya, stubborn Ox I am. It's one thing to write about vulnerability, it's another to witness it. And of course, she did not leave.

She continued to stay by my side until I was discharged, bringing me home, and getting some shut-eye this morning.

The result is that I did not have a heart attack, my enzymes are fine, and stress really does impact the cardiac system. If I want to keep working full-time, my life has to get simpler. And that means cutting the bull, the negative, the toxic. I still love the person my Ex is. One doesn't have someone in one's life for that long (11 years next week) and not care, but I'm getting awfully tired of being the bad gal. It took two to break us, and for (her camp) to see my health as another tool of manipulation is pushing me over the top.... I'm done with other peoples' drama/accusations/judgements. I'm done with those who don't understand what I have and could possibly think I manipulate people with my health. Only those who could even think it are themselves capable of doing such thing. My mind and conscience are clear, my focus is my health and my life, and no longer shall other peoples' baggage or tainted opinion of me matter. It saddens me because it means that she goes too. I am grateful that she brought me. I know there's still love there, but right now I don't need their drama or judgement. We both did and said hurtful things and I will not allow (them) to punish me any longer even if that means cutting her out of my life. The complication just isn't worth my health anymore. Besides, if I was out for coffee with any one else, they would not have wanted me to drive either and bring me to the ER.

Love should not be measured by what a person says, but by what a person does.

that was easy

2010-11-15T14:04:00.006-05:00

I have today off... came back from a 3 day weekend away with la femme francaise in beautifully old Quebec City.
I'm not looking forward to returning to 'normal life'. Tomorrow will be packed with clients back to back and no breathing space for case notes. Then off to start the legal process with the former love of my life...I don't know if it's irony or what, but I happened to be away with la femme francaise on the 1 year anniversary of my break-up. I wore my wedding ring (on the other hand). And there were had absolutely no issues with me wearing it. It's a grown-up relationship.

I'm not looking forward to any part of the day tomorrow including the part where we start legal closure. Right before I left for this little getaway, I was also given some very bad unexpected news concerning my finances so now I have to start dealing with that or else. It's going to be a long journey to balance (what isn't?) but am starting to believe that I can do it - it will be stressful to say the least and/or could result in an entire lifestyle change for the worst to say the most. Hoping for the best either way but leaving the worrying to my Creator. It's I that has to get busy with the ground work cleaning up the potential disaster.

Speaking of best, I had a fabulous time walking, talking exploring, eating, in Quebec. I brought my O2 tanks and even needed them. In fact, la femme francaise picked 'em up for me before the trip (the location is closer to her end of town). Anyone who knows me, knows my pride often gets in the way of asking for help and this was a big deal. But it was done, easy.

There is something very heartwarming/comforting about dating at this age: all the bullshit is gone. All that wanting and needing to impress is gone - doesn't mean we didn't have manners etc. not at all, but I didn't have to be a hero and walk up a hill if I couldn't. In your 20s people are so fixated on youth and ability that disability is thought of as something less, the focus is on the ability you're 'missing' (the stuff you're lacking). When you are older, more mature it's not what's missing, it's what's left that counts. It becomes about what and who's in front of you. When you are past mid-life as we both are (due to illness or natural life expectancy) it's all down hill from here. And that is not such a bad thing. It means that all the illusions of having some trivial things in common doesn't really keep a relationship together if the values are not aligned. It just doesn't matter if we see eye to eye in taste in music, clothes, even sports or leisure activities if one is doing something that is completely against the other's values. At this age it's about mutual respect, kindness, tolerance, love, care, etc. I was floored when she, after ordering bacon at brunch, said if this progresses where it seems it could, that she would never have pig or shellfish in the house. The instant respect that came without so much as mentioning it (she knows I'm a Jew but I never talked about being kosher) knocked the wind right out of me - and not the hill-climbing kind of out-of-breathness that usually stops me in my tracks, but the omg, this is so easy kind of amazement. It wasn't about giving up herself... she'd just eat it over at her bud's. It was about what she called respect. Plain and simple. No fight, no lossing of the self, just looking at the bigger picture.

And it was so easy...the entire weekend....was just so easy.

numbers are so binary

2010-11-09T12:11:00.009-05:00

In exactly 4 months today I will be 38. I am absolutely beside myself that I am this "old". It's also starting to scare me again. Every so often I Google Truncus Arteriosus just to read what's out there. Some medical journal at some Mass. University made me laugh the other day. It's fun (but sad) to read that adulthood (20s & 30s) for TA patients is an improbability. I spent some time showing la femme francaise these articles, not to scare her but for humour: oh they say they don't live past xx eh: hm I'm right here, or am I? So I laugh, laugh at science because it's not the end-all-be-all. It's not 'proof'. I laugh because I'm still breathing, proving them all wrong. Then some days when I feel weary and tired, I get very sad and scared recognizing that I am pushing even the limits of what is known. To be 38 (OK, in 4 months- I really shouldn't count my chickens before they hatch though) with this and still working, breathing, laughing, loving, living is an incredible miracle. Some days I'm so filled with gratitude that it will be me that will probably (stubbornly) break the records for oldest TA patient when she dies. Other days I wish there were more like me - maybe get more information because I'm so tired of being in the dark (what can I take, do, what are the limits, etc.).

I'm working so hard at keeping myself alive, being able to continue to work and breath and move around in this world that it's becoming so tiring.
I haven't taken my BP in a while, or my pulse rate. I know the numbers have been going up (resting pulse) and down (BP) and have been avoiding "seeing" it - keep myself in denial that much longer. There are days at work I have a very hard time. There's so much stress, I am in effect doing the job of almost 2 people. Yet again we are short staffed, actually 2 people down on our team, and one other counsellor short over on my side. I am burning out. I knew I've been heading down this road so upped my massages etc. to twice a month to get me through this crunch, more bubble baths, even a retreat thrown in there for good measure. Yet the stress is still getting to me.

I am not as jovial, just sluggish, and right now, not working one bit. I should be catching up on case notes but cannot recall a thing from the session. My mind is as heavy as my heart-beat. It's during times like this I wish I was still friends with my Ex. (well, aside from wanting peace and still loving the person, etc.) I wish I knew how to get a 98 beats per minute resting pulse rate down... without the aerobic exercise (as suggested when I Googled the topic). I can't be doing aerobics - my Dr. Cardio man forbids it, besides, 2 flights of stairs can be aerobic enough. Not sure how I can elevate my BP where it was an 88/56 last night. I look back at my records and they continue to decrease despite my efforts at health. And I feel it at work too. I could be in the middle of group, get up to right ont he white board and I feel like I'm about to collapse. I've tailored my teaching style somewhat and count myself as lucky that I am with a small group where I can teach pretty much sitting. My last position at this facility I could not, I had an audience, and a hard-core energy sucking unsafe street-level group. I loved it but couldn't be "on" all the time.
But now because of these designer drugs I can't even do whatever I want when it comes to herbal supplements. Almost everything's been refused from my Naturopath from my Cardio NP.

I have another appointment again tonight. It might be my last if there's no treatment plan. She says she actually has something that was OK'd by them. I cannot believe that even my prophylactic use of vit C (2,000mg/day in winter) was refused because it apparently affects the meds that much. Hm, interesting commentary from the same cardiologists that don't "believe" herbs etc., can actually do anything.

That's the other stress in my life right now... the legal journey is beginning and it's stressing me right out. My life is quite binary at the moment: lots of good: la femme francaise and I are heading to Quebec City for a romantic weekend-getaway later this week and yet the old love of my life and I are no longer on speaking terms (unless through a hired professional). At work I'm becoming really comfortable in my new position (my boss called me a rock star last week) but on the other hand it's a source of great stress right now requiring much more than I can give. It seems to be good or bad - whatever happened to all the grey-zones? I suppose life is about finding balance in the extremes. I dislike binaries.

invisible disability

2010-10-30T17:48:00.006-04:00

Well it was bound to happen eventually... there's only so much I could put off not "letting" her see me wearing my O2. And so it's happened and I'm still alive (of course). You'd think that since I've been sharing all my health issues to the greater world I wouldn't still have problems letting someone (new) in. Well, it's just as difficult - if not more so. I can write here and not give a care in the world what you/others think, but la femme francais, not so much. Of course I care what she thinks- I'm still human and still fear rejection.

But I'm not being rejected. It's so weird and I have to fight all that self-sabotage baggage to not push something so wonderful away. I also don't want to be "cared for" in that helpless patient kind of way. It's kind of a relief that she knows more about the technicalities of planes than the technicalities of the human body! Sometimes it's a little disconcerting.

So we're planning a trip to la ville de Quebec soon and I guess it's about time she get used to the O2 issue cuz if I'm gonna hang out in her old stomping ground I'm gonna need to bring my travel tanks (old Quebec is all hill). It's a quiet pleasure to have someone consider accessibility issues without even asking (old inns with no elevators vs locations of b&b's in relation to the major hills). It doesn't seem like a burden right now (although in all the literature on couples & family therapy that I've read, it indicates that what you originally fall in love with in someone, you eventually hate). So maybe right now it's not an issue... but there I go resorting to doom and gloom and not accepting what IS right in front of me. What is, is.

We walked a trail yesterday. It was cold and wet and we went slow. On the way back I turned to see how long I walked and couldn't believe that I did almost the entire trail. I am, at my own pace, returning to a pace I could handle about two years. It's a lot slower, but I can do almost as much. It was so cool to walk the trail... OK not at regular speeds, but go further than even a year ago.

Something we've talked about is self-care. How some people don't take care of themselves and take their health and life for granted. I feel appreciated for my efforts to still live an active life - perhaps not her level of active, but there's no comparison because she is healthy and super-fit and has to be (for work). We all have choices she says, and I could choose to sit in front of the TV on a cold and grey Saturday morning rather than walk the forest. But I don't. That's the joie-de-vivre she sees and acknowledges.

Perhaps disability is not as scary to some as it once was. The more it's talked about, not hidden, the more sensitized people become. I think right now it's that reason I continue to write. My reasons have definitely changed over the past 2 years. Originally I did not want my 'ex' wife to be alone with the huge burden of living with someone who was in the process of slowly dieing. Since we're all dieing on some level I'm not sure that's such an issue anymore. Sure there are still days I cannot for the life of me catch my breath and have to end all activities or leave work early, but they are less frequent and last a very short time in comparison to the past.

My joie-de-vivre is reawakened. I spent the past 11 months opening up to it, finding me again, and now I've found someone that speaks the same language. Literally. It's incredible. There are words I thought I had forgotten long ago that were buried so deep, that in some cases go back to childhood (with us having read the same french cartoons etc.) that just bubble to the surface. (And she doesn't make fun ofhte fact that my grammaire is atrocious- just loves that I try). I had thought it dead and like a slow burning fire it's re-emerging realizing it was never gone, just buried. Perhaps this is why I could do that little trail in the cold rain yesterday. I'm not sure I can snow shoe but I am so grateful for the opportunity to be able-bodied enough to still go outside and walk in the universe, breathing in the fresh air, milling about slowly in the pine and birch forest.

I'm excited to return to one of the most romantic cities in North America but with her. I've wanted to go back there the past few years. Now I can be shown around rather than lead the way. Ahhh.... I am so blessed for the ability to open my heart once again! May it continue to repair itself, both metaphorically and medically.

(Meow-Meow I intend on keeping that pact: 53!)

living her words/ living my words

2010-10-17T15:11:00.000-04:00

Not quite sure what to write lately - just feeling very blessed - living, breathing, being well-ish enough. I'm having moments of pain, but am able to cope with it. I guess it's "easier" now that my lowered baseline of the past year or two has been the new norm. Well, my norm. I know not to expect much. That doesn't mean I'm giving up, rather recognizing that "it could be worse" (I could have to use a cane again, most of the time- and right now, I'm not!!). It's still some getting used to for la femme francaise but I'm getting a sense that it's "ok". The thing about dating at this age (and hers) is that health issues flare up, unlike when you're young and in your 20s raring to go with nothing the heck wrong with you. At our ages there are bad knees, arthritis etc. that creep in. Boy am I ever grateful for that! That and being with someone who accepts that everything after trauma (or who's been through their own wars, literally) is manageable - not like, "a walk in the park" but, a gift nonetheless.

Yes, she now knows about my DNR, and more health stuff but little by little she hasn't run away, only grabbed my hand in support. I'm beginning to believe that I've been forgiven by my Creator for breaking my vows/my promise to my Creator (maybe not to my ex yet). What I was wrestling with on Yom Kippur seems to be slowly resolving itself, not without pain and reflection, but perhaps a gentle acceptance or letting go that sometimes we do turn our backs on g-d and that like a parent that will always love their child (whether they like them or not), I am also accepted as a child of the Divine - that I too make mistakes. Afterall, it's the same Creator that put la femme francaise in front of me when S/He did. What a gift, what a way to say "you're allowed to be happy KAt, you're allowed to move on, you failed this person but here's yet another chance". At least, that's what I've been getting in my last few meditations.

Another friend reminded me tonight of something I said in July "we're not together but I'm together". I was amazed that it was I that spoke those words - and that someone who also went through a major break-up is going around quoting me! Some days I wonder who's standing in the mirror! This was not me 3 years ago on a dark night in November, or even a year ago. So much has changed - some very painful stuff has happened, but nothing that has killed my spirit, only made it stronger. And yes I will add "what doesn't kill you makes you stronger".

Work is good, stress is increasing as a direct co-worker is leaving and my workload will double again - however I am getting much better at handling stress and anxiety - to the point that I'm very sensitive to other friends' inability to deal with stress and anxiety- I end up needling their ears just to help. I am grateful to offer such a gift (and have been gifted with that training from work). My close friends have put up with a lot of late-night crying, self-pity, pain, etc. from me earlier this year that I feel so fortunate to be able to offer such meager gifts (not that friendship is a score card, but separation/divorce/grief tore a few strips off me that I really couldn't get through without them and want to offer my gifts back: perhaps taking care of the ears that listened to me all these months!). In my own world am so fortunate to have benefits to pay someone to help me relax (massage, accupuncture, etc.) if I'm not able to get their on my own (be it through whichever self-care means I choose). Anti-stress is essential when you're looking to optimize your health. And my life is SO full, I mean SO full that I don't have time to let stress get the better of me. I forgot how much time relationships take!

discloure pt 2

2010-10-05T21:51:00.003-04:00

So circumstances have indicated that it was about time to start disclosing some truths about my health/life sentence to la femme francaise.
Of course, I didn't go into details because it would have been be too overwhelming all at once, but the situation called for honesty, deep sharing etc.
She knows I probably won't see her age (she's significantly older than me).
And of course, she's not oblivious - she's noticed my nails, my inability to keep up, etc. etc.
Her reaction: it's not what people have, it's what they do (or don't do) with what they have.
We'll see if her words match her actions when my health flares up. This is a lot to handle. Not many people are built to deal with someone else's serious illness (even though vows suggest in sickness and in health, most people bolt when it gets tough - I know).

But for now...I'm in so much trouble!

medication meltdown

2010-10-01T22:34:00.003-04:00

Landed safely in Toronto... with only a disastrous medication meltdown. I was due for another shipment of my designer meds on Thurs. since I was supposed to be on the road to TO after Friday's afternoon (work) group. So today I get a phone call from purolator at 7 am telling me that the meds have not yet left Toronto and can they deliver them Saturday morning. Um - NO. I have exactly enough meds to take me to TO but none thereafter. I gave Puro an Ottawa friend's address to be delivered by 3pm (departure time) while I was at work. So Purolator said they'd get in on the next flight out. Fewf - it's only 7am, there's still time before 3pm.
So 2pm comes and my friend still hasn't received anything. I call the pharmacy in TO just to double check. Not sent out! WTF. I explain my situation, telling them that I'm in training all day and that I won't be able to pick 'em up in Toronto even though I'm there. So we arrange for a 7am Sat. morning delivery.
They call back and low and behold my life-enhancing meds are in the air on the way to OT - and I'm on the way to TO.
Life is a little crazy sometimes - and sometimes I just don't want to be the one organizing it all.
I've been practicing assertion the past couple of months so at one point when Puro called me I told 'em (not to go f*ck 'em selves even though I really wanted to)... I told them to work it out with the TO pharmacy because I was no longer available (TO pharmacy had my entire itinerary).
And, because even though my life can get chaotic, I still have angels, my meds were delivered to my friend's place in TO by 8pm (not 8am next day)!
So here I am, meds, belly full of super good, super cheap Indian food and my first weekend away from la femme francaise in over a month.
Good food makes me content!

Naturopath take 2

2010-09-30T15:17:00.003-04:00

So I saw my Naturopath last night. She also does acupuncture. Now I originally wanted to go to a friend's colleague's place but got lazy... I want to keep all my services under the fewest roofs possible. I'm so complex that I don't need to be opening files all over town regarding my health.

So since we are limited in what we can do we are looking at simple supporting of my organs, hence the acupuncture. She started with points on my feet last night: big mistake: I'm a Pisces and touch of any sort on my feet can be unbearable. After the third needle she had to take one of 'em out. I felt like I was going to throw-up, pass out etc. She said I wasn't kidding when I tell her that we have to take kid gloves with me (children's dosage for any herbs, etc. ).

Anyway, she is now linked up with my Cardio-nurse so she can get the back and forth info. I didn't like being the one in the middle. i know a lot about my body but started getting lost when they Cardio-nurse was explaining the chemical compound of a certain herb/plant etc. then I would have to relay this info to the Naturopath. It was getting a little crazy. At least now they can come up with a plan together! That's what I pay the Naturopath for anyway (although it's covered under benefits, which I have yet to receive reimbursement. I hate insurance companies sometimes).

Bye bye summer: Fall brings the return of pain

2010-09-23T17:29:00.004-04:00

Ok, so my spiritual health has been on the up and up but my pain and edema decided to come back. I've been blessed to enjoy a relatively pain-free summer. Today I'm having a hard time walking so I'm going to soak a warm bath.
I hope this isn't any indication of the fall to come. Fall and Winter are usually very hard on my body (and extreme summer heat, but we haven't had much of that). The Naturopathic support is pretty useless because my Cardio Man and Cardiac NP kibosh everything I send them! I'm feeling a little stuck in what I can do. They've even warned me against my high-dosage of Vit C when I get sick (5,000mg). Seriously, I'm not well anyway.... I just want to feel better.
There - the pain has spoken!

Autumnal Equinox/new year brings a calm wind of change

2010-09-21T17:50:00.014-04:00

So meeting new folks means looking at issues around disclosure, especially if said people are becoming important or if they'll hang around for a bit.

I could always choose to not disclose. I am "lucky" to be able to hide my disability, but hiding also means I come across as lazy, poor sport etc. when being invited to hikes, long walks, dances etc. So I make the choice to disclose, a bit at a time. I don't want to depress people, scare them off or overwhelm folks - especially one person in particular. That last thing I want to do is scare her. How fair is that to meet someone and say "um, I probably won't ever experience your age" (she's older than me).

The thing is, if I wait too long to disclose, I'm withholding. In my value-system withholding is a form of lieing. If I disclose too soon, it may scare her and she may run. But I guess that's a choice only she can make.

Right now though it's not too much of an issue as our walks seem to be more leisurely - stop to look at the rabbit, watch the heron take flight, observe les grenouiles (sorry forgot English word)....
Tonight's walk, under the autumnal equinox' full moon was breathtaking. We went (back) to her favourite spot which included a bit of forest, a bit of water and a bit of beach. I couldn't have had a more perfect day. At work I got paid to be on excursion by a lake. It was a beautiful day which ended with an equally wonderful walk with a beautiful woman. I am so filled with gratitude and serenity, I never thought this day (feeling at peace with oneself) would come! And the thing is, it's here even before she walked into my life. Some days I just don't recognize myself as I am not the same woman I was even 11 months ago. She wants to get to know me, I'm still getting to know me, the authentic me. It's an incredible journey to be on, for myself, never mind if I end up with anyone else. And at this point I don't want to "be" with anyone. I like my life, my space, my career, and not rushing anything - time is precious, but so is just living it. Just living in the joie-de-vivre encore!

Yom Kippur, forgiveness and vows

2010-09-17T20:56:00.010-04:00

It's ironic that the "sermon" during our Kol Nidre services tonight talked about vows... I've been thinking about vows all week. Vows and values.

Vows should not be made lightly for they are serious, in the eyes of the law, morality, g-d, etc. Vows are more than promises, they are solemn declarations of honour, respect, loyalty, monogamy (for me), commitment etc. etc.

Each of those values are also ladden with so many interpretations. People think (marriage) commitment is just about staying with something. It means so much more than that. It means committing to what you've committed to of course, but also to better yourself and your relationship with g-d (Creator, Universe, etc.) to enable you keep the commitment; which means committing to yourself and self/spiritual development. Staying with someone just for the mere fact of stying is not committing. It is not working towards the greater goal set out by a vow, a declaration, a contract.

The further I travel down this spiritual path the more intrinsic my values become. They are no longer shallow words or ideals - they are how I live, breath, think and want to be. I can no longer separate my values from who I am anymore. For me and in my life and what I've been raised with, I value marriage as a legal, emotional, moral, sexual and spiritual vow. Five vows in one. That's commitment. The vow isn't just to someone, or some legal arrangement, it's to yourself, your higher self, your commitment to keep yourself growing and "able" to keep healthy etc., and a commitment to the one that created you (your g-d) that will, if invited into your marriage, care for and nurture your commitment and loyalty to a person/unit/team. There's a reason religion is part of a marriage ceremony. In my value system divorce makes a mockery of my relationship to my Creator and the values S/He entrenched in me. I have been reflecting all week on how I can forgive myself, and hope for forgiveness for my transgression of my value system being, well, shat on. This broken vow was not of my making yet it is I that is praying to my creator, the being who breathed life into my lungs, my soul, for forgiveness for the the gift of these (MY) values. It is I asking for forgiveness in making a mockery of marriage even though it is not I that chose to break the vows, but end up with them broken nonetheless.

(This in no way reflects anyone else's decisions to divorce, cut their losses, etc. For me this is about what's acceptable between me and my creator - that is all. Kinda like the abortion issue: it's only how I feel given the values I inherited, not about demeaning anyone else's choices based on their own value system and what is acceptable for them- except of course for one other person, the woman who made the vow to me- then again, perhaps it's my mistake for believing her value system was in line with my own despite all the grave warning signs that indicated otherwise).

So, pray I do. I wrestle deeply with knowing that I was given warning signs along the way and chose to ignore them: parent divorced, etc. In my meditations this week I've come to realize that these warning signs can still be respected again, for (my) future involvements. Dating at my age has become a series of interviews with blunt questions such as: Do you believe in something greater than you? Do you smoke? Are your parents still together? What do you really think about marriage, loyalty, commitment? How do you feel about change and self-development? Is marriage important until it becomes inconvenient and you aren't "capable" of doing it anymore? What happens if that arises in you (and it will, because g-d knows in all couples who've been married as long as my parents have, it happens. We are only human, we are creatures of escape. But we are also creatures that seek to pair up and be known intrinsically for who we are, wanting the support and sacred connection that marriage provides).

And so these are the questions that are shaping me and my search for someone who really, I mean really, shares MY values. And not only when it's convenient.

Because a vow kept when convenient is not a commitment, it's convenience. It's when that vow becomes inconvenient: do you bolt because you can't deal, reshape and regrow or do you stick through the growing pains and act as a person of integrity and honour? And does it mean that I am a person without integrity and honour because I am a (soon to be) divorcee? Can my creator forgive me for what I, in my value system according to and for me, consider a wrong-doing? I'm not at all trying to play the victim here; but I am not the one wanting out of the marriage. I am not the one that didn't not mean "till death do you part". With Yom Kippur upon us I ask these soul-barring questions of myself and to my creator. What is my role in this transgression of a broken vow?

And how will I take my intrinsic values into my new life - even though it is not a life I chose (I made a clear, committed choice 5 years ago). Now that I have a life(style) I did not ask for, what shall I make of it?

How can I live with integrity among a society of people that accepts divorce just because "half of us get one anyway". And a system that makes it easy to break those promises with rarely a consequence. How can I as a woman of her word, her honour, as a woman that values marriage, be a 37 year old divorcee seeking similar values? I almost feel like a fraud: "I believe in marriage, just ask my ex-wife!". It is those kind of gut-wrenching, soul-twisting questions I'm seeking answers from my Creator.

It requires skills, knowing yourself inside and out, knowing that anything less just won't do and knowing that you are worth it.

And so, the interview continues. The woman who I've been out with every weekend since, well... She (la Femme Francaise)) has passed the first level of questions: believes in something, parents are still married, doesn't smoke, is loyal (same career for over 25 yrs, I'm already "approved" by her BFF of 30 yrs), driven and a woman of honour (is very, very high in rank in her career), but there are still other make or break questions to come.

And if those answers do not reflect my values I will no longer settle for anything less no matter the kind of attraction that may be felt. I did it once, I have to slowly forgive myself and ask my Creator for Her/His forgiveness for not heeding the warning and sticking my ego-filled-will in the mix. I would rather be alone than with someone who believes in marriage until it is no longer convenient or until they are "not capable". I am worth more than a tossed towel in the pile of someones life-heap of broken promises. If that means conducting interviews than so be it. Romance is over-rated. Ok, it's not, but it can blur your better judgement. There's a time and a place for it, once I learn the person's core-values then romance can begin!

"Just gonna stand there and watch me burn..."

2010-09-11T23:26:00.011-04:00

So as usual I'm keeping a very different pace and lifestyle these days - and am very happy. I'm still doing what I love and yet trying new things with new folk.

Last night at my labyrinth walk I had another insight (they're good for that). I decided that since I'm schooled in psychoneuroimmunology and neuroplasticity then why don't I start believing it. So I decided that I'm going to live past 43, that I'm not going to die just yet: I still have too much living yet to do. (Hence one of the reasons I'm getting back into alternative medicine: I want to live, so how can I support myself?)

That is so different from where I was last year, mainly because of these new meds, but partly because I was probably with the wrong person. I am very much a free spirit, one who loves to do things, one who creates her own destiny, and I spent the latter part of my marriage almost begging to live/be alive. I get that G-d/Creator threw us a lot of curve balls, but seriously now, we're here to live, not join the land of the dead. To be fully authentic, genuine and soul-filled, with all the ups and downs life throws one. Now out of respect for the other person involved, I won't go into detail or claim it's her fault. It's not. I was the one that also chose to "light myself on fire" to get noticed. Hence where the title of this entry comes in. When I was driving home last night, I heard the (new to me) Eminem/Rhianna song - I had to pull over because it basically described the ending of our marriage: "just gonna stand there and watch me burn, and that's alright cuz I like the way it hurts."

G-d I feel so grateful to throw away the matches. I feel a new life in me that I don't have to do that anymore. I feel 10 feet tall, I feel that my sparkle in my eyes is back - and people just notice it, without begging. Not to sound cocky, but with my new hair style etc. the past 2 weeks people have been telling me how incredible I'm looking. It's only reflecting what's going on in me: it only reflects how I feel. I'm no longer burning up!

Hence the decision that I'm not going to die anytime soon. It's not about denial, it's about my belief in neuroplasticity. I teach my clients every single day that their lives and behaviour can change if they change their thinking (and I show them how) so why can't I change my body, my attitude to want life again? Put the matches down, and live. It is such a relief. I was sharing with my guys research on survival and the power of the mind and hope with regards to Holocaust survivors. Those with hope (and "luck") survived... The spirit is so incredibly resistant. I see people day in and day out suffering incredible losses. Those that make it are willing to work through it, have faith and hope. Those that aren't connected to a greater sense of *something* don't make it. I don't want to be one of those, and for years I wasn't one of those. There is no biological/medical reason I've lived this long. Sure, I've got great collateral circulation, but that only accounts for 10 to 20 years of living beyond birth. It's always been my spirit (or, as some call it, my stubbornness). I will be stubborn and keep a hold of that character defect thank you kindly, it has served me well! The other defects have been melting away over the past 7 months. Maybe that's where the release comes from?

So, I pick up my joie de vivre where I left it: Today I went for a walk in my favourite forest with someone that doesn't need begging to go out, despite her incredible work schedule. Excitedly, I wrote last week that she showed me her favourite greenspot (espace vert preferer), so this weekend I showed her my favourite greenspot. I'm not sure what will come of this and even if it doesn't get serious, I am enjoying washing my soul of the matches. I'm enjoying feeling alive again! There's only one reason to burn in flames: with passion, not desperation. I feel sad (but relieved) for the me I'm leaving behind (that's all I knew for several years). I feel even more sad for the ex who's still there: it must be really hard being lost. I wish her peace and serenity and meaning in life.

Naturopath

2010-09-08T11:22:00.006-04:00

I'm making the most of my benefits.
I started with a naturopath yesterday. The first visit was a consult and of course over an hour long. I think I may have scared her with my entire list of Dx (diagnosis). By the end of the session when it was apparent that I'll be a learning curve for her she actually took me on. Probably because my own goal and expectation of treatment is not to cure but to support my body and health.
Yay!
Having benefits rock and being able to treat me with something is better than being sick for two weeks. We're going to begin with immune system enhancing. I like that she is willing to work with my (western) practitioners and cc's them on things.

It became more apparent when I was filling out forms and reached the "in case of emergency" line that I really need to get on that. I guess I just have to bite the bullet and ask - all a friend can do is say no, then I move on. It's better to ask then have absolutely no-one. Otherwise people usually resort to parents and they are NOT the ideal ICE (In Case of Emergency) contact. My ex is no longer an option - I can't trust her to care for herself, let alone be there for me. Makes me sad. I hope she finds serenity one day.

Will keep updating as to how this is going. I don't see her again for 3 weeks: I'm too busy to squeeze her in the next 2 weeks and she needs time to get acquainted with my physiology. High Holidays start tonight and well, life's been incredibly busy (but fun!) - that's another post :)

baggage - doesn't have to weigh you down

2010-09-06T11:31:00.008-04:00

Being ill can be heavy baggage to carry into new relationships - both friendships and romantic.

I've been meeting new folks since spring and really embracing my recent growth and allowing myself to really enjoy life again. It helps to have a "normal" schedule for the first time in eons, really! It's a whole new world to come home from work and have the ability to have dinner, go out with friends, and do nothing but social stuff on the weekends! To the point that... I'm trying all sorts of new things and pushing my boundaries again. And yes, there's inspiration for it.

The group of women I'm hanging around are incredibly fit - to the point that they climb mountains, and hike the Adirondacks for fun. Meanwhile I'm not able to walk more than 2 km's in nature. It's been difficult managing the baggage of limits without well, dragging it all in, especially when I look fit (thin, active attitude etc.). Take for example last weekend... a few of us were supposed to go kayaking. I decided to join in because someone I am smitten over organized it. I guess Creator didn't want me to go because days kayaking was cancelled due to Mother Nature. So instead her and I went for a walk at her favourite conservation area, followed by dinner the next day. I am in so much trouble, feeling alive again (with her). I've waited for active participation for so long then someone who is so incredibly active that I can't keep up, pops into my life. I've divulged little limits here and there because no one wants to hear the whole truth, and I don't need pity. I love my life, I love where I'm at, and that I've lived this long. I don't mind sharing if it comes to that, but for now I can bring an open, curious attitude (that I once had) to anything I ponder.

So maybe we'll go kayaking after all. I am hoping that kayaking is like walking: you can do it at your own pace. I guess I will find out. And no, I'm not silly enough to push myself beyond healthy reason just for a girl. I'm too old for that and respect my own self too much for that. It is satisfying though testing those boundaries again - see where they're at since the last time I "tried something new". Who knows, I may actually be able to do this, afterall I used to canoe with my ex. I was told a kayak is much lighter. We'll see ;)

letting go of western medicine

2010-09-02T16:18:00.004-04:00

Alright so I finally had my consult with the stroke clinic and as I thought I'm OK - within reason. So I most likely did not have a TIA says the dr. but he also didn't want me to leave thinking I was in the clear. He reiterated how my body's blood-making is getting out of hand and that there's no coincidence that whatever did happen that Sunday evening in late July had nothing to do with my highest hemoglobin ever. He wants me to be having phlebotomy's more often! Blarg.

This just goes to show that ER doc's are so hyper-focused on relieving ALL problems that they don't actually know what the real problem is. All these specialist later and my own cardiologist is not worrying- then again, this is part of the course for him. It's these ER docs that just don't know what to do with someone who's out of the norm. They're used to comparing a body to homeostasis. Like today, at the stroke clinic they took my BP and it was 73/48. They took it numerous times because they thought they got it wrong but each time it was within 2 points.... had I seen a triage nurse int he ER she would have flipped right out. I'm not going back to western medicine's ERs. I don't have to now that my western-medicine ex is no longer in my life. I suppose I did it to make her happy but time and again the visit proved to be absolutely pointless. And perhaps the stubborn part of my went also to show her just how limiting western medicine is. It can't do everything, it doesn't know what "normal" is, all the machines in the world won't help if you don't understand the body-whole.

Having said all that I have an appointment with a new naturopath next week. I have a working knowledge of the stuff through my years of self-study and working with a herbalist in my 20s. it's about time I let someone else's knowledge work for me. Damn I love benefits!

still sick

2010-08-17T23:09:00.005-04:00

Nine days with this "summer cold" turned sinus infection. I was away on vacation last week and was sick during it too. Not fun being feverish on va-ca, not at all.

This sucks not being able to take any meds or anti-biotics. I was never a big fan of them and believe they are over prescribed, but 9 days later I'd like to sleep through the night; I have a lot of work to do (day shift and evening shift in the same work day).

Been downing an average of 3,000 mg of vitamin C a day and have recently tried "oil of oregano" just because this is awful - my face hurts so much I can't make certain expressions.

Incredible news re: DD

2010-08-10T22:23:00.002-04:00

So my benefits at work kicked in. They cover 100% of my meds, with no yearly limit. When I gave my cardio nurse my new policy number she forwarned me that this Designer Drug is an anomoly and even the most generous of plans don't cover all of it. It's a class in it's own.
So in dealing with the TO pharmacy that dishes out my meds I gave them the new number and they said the same thing. So, we did another 3-way call, this time to the new insurance company. Low and behold, ALL of my script is covered, with no yearly limit.
I am beyond floored, so much so that when I was on the phone at work, I started crying with joy. That means that once the balance is payed off (from the spouse's insurance for which I'm still legally entailed to), I won't have to use any more of my income for meds. It can be used for, um, saving for Israel, or, um, living!
I am still floored.
I would have screamed but my throat is still so sore (not able to take anything for this latest bug I have). So alas, I shall let the tears of gratitude flow.

dr.s are not g-ds

2010-08-09T22:43:00.004-04:00

So I've got some sort of summer "cold" or something or other. I went to a walk in clinic just to make sure it wasn't strep and to kill the bug before it starts to tear down my immune system. Usually I'm given antibiotics (because I'm allergic to Penicillin) and so that's what I was given to day. I wasn't familiar with this new antibiotic, so I asked the dr. if it had any contra-indications to Tracleer. Of course she wasn't really familiar with it and said my pharmacist should know.
Great... this sounds like a wild goose chase in the making.
And so it was.
When it was filled, I made sure to ask again, about any contraindications. One pharmacist never heard of what I'm on, the other was a little familiar. I gave them my Cardio man's number to phone it in. In the end, I'm out an hour and out anything to treat my little infection. And this is precisely why I became interested in alternative medicine when I was all of 16: because usually I can't be treated by the mainstream stuff anyway.
I took it upon myself to fax the walk-in clinic a complaint. Had she taken the extra 30 seconds to check her CPS (any medical professionals "bible") I wouldn't have to run across the city, spend an hour waiting to see about these meds, and perhaps she could have scripted me something else. Now I have nothing else to treat this (at least I have a dr.'s note for missing work).

So I'm back to my traditional way of doing things: zinc, iron, and 3-4,000 mg of Vit C, tiger balm to ease the throat. This better go away fast: I don't want to be stuck in the US with some bug. Oh wait, I have benefits now!!! (I still don't want to be stuck in the US with anything).

bureacrcay is why people stay sick

2010-08-05T11:09:00.004-04:00

I really really hate bureaucracy!

My "designer drugs" come from a pharmacy in Toronto, couriered specially to me (a $4000 box wouldn't be sent through the mail after all). They take up to a month to process payments (my insurance, Trillium and my personal payments I send). I'm due meds today and I don't have 'em because these "people" say I'm behind three payments (um, bitch at me once you've spoken to your accounting dept!). I've been fighting on the phone with them all week saying I've sent it in etc. etc. and they refuse to release meds. My Cardio nurse is on vacation and can't advocate on my behalf.

They don't get that it's not my fault they take 4 weeks from the day they receive my cheque to process the damn transfer payments. I just don't understand why Trillium just doesn't send them a cheque directly and sends it to me instead to forward to them. Bureaucracy makes NO sense.

So to try and figure out the mess I was on a 3way call with the TO pharmacy, Trillium (and me). Ah sweet justice... the stupid pharmacy that thinks I'm hiding something heard it from Trillium - they they're still processing!

One day someone will realize that double processing is a waste of time and maybe just maybe some efficiency expert will make changes: it's the government, I doubt it.

more sarcasm

2010-07-21T00:05:00.003-04:00

So here's the best part of my haemoglobin being ridiculously high (number of red blood cells in the body): I'm anemic (according to medical def. means not enough red blood cells being produced!)
Perhaps that's why I'm being sent to the haematologist: my rbc's are screwing like bunnies but not actually producing or carrying any haem.
Gotta love the human body!

On the positive note, I actually have a strong immune system and my wbc (white blood count) is right on target). I credit my mud-pies (when I was little) to being able to fight off dirt and germs today. That and the place I work. I'm exposed to street level 'grime' and intense diseases everyday. Kids today are not being exposed to dirt and germs due all the "antibacterial" products out there. We're going to have some very sick teens and adults! One germ and their systems will spin out not knowing how to fight it, never having had to build antibodies in childhood. If you want a strong child don't sanitize everything.

more adventures in the ER

2010-07-20T23:05:00.005-04:00

I went to the ER yesterday, because I have nothing better to do with my time.

Yeah, I'm full of sarcasm. It never fails when I have big deadlines or lots of stress that my health just flairs right up. I feel like a broken record to those I am accountable to: ah, here's a doctor's note... yada yada yada.

This time I presented with what felt like to me a migraine but with very odd, new symptoms. Anyway, long story short, I knew it was neurological because certain things just weren't adding up. It wasn't hypotension, low-blood sugar or my usual moments of loss of control (dizziness, blurred vision, confusion etc.)

So ya following these symptoms so far? Yeah, they sound a lot like a TIA (transient ischemic attack) otherwise known as a precursor to a stroke. Now of course I'm no doctor, just a girl who knows her body very well so I let the dr. be the judge.
However.
This new generation of doctors don't seem to realize that Truncus Arteriosis is a cardiac condition! I had to remind dear young dr. that even though we're looking at neurological we can't rule out influence from TA. He politely reminded me that I'm a young woman and my arteries are totally fine: no cholesterol, no blockages or other things you'd look for in older people when you're looking at ruling in TIA etc.. In his opinion TIA was highly unlikely.
I politely reminded the lovely dr. that although I'm "young" I'm actually very old for what I'm living with.
So, he does the tests... the blood tests and the CT scans.
CT is normal - just as I thought. It's not my lot (in life) to have TA and some weird brain lesions or tumours.
Blood tests on the other hand were not normal - not even for my normal. And that's when the lovely young dr. became more serious and decided to refer me to the stroke clinic and a haematologist (for which I already have an appointment with tomorrow!). Some of my numbers that I've followed since as long as I've been recording my numbers, were really high. Not the usual high for a TA patient, but the highest they've ever been in the history of me tracking them (over 22 years).

So, naturally I have to have yet another phlebotomy stat. I hate them. I know it's a really simple procedure as simple as giving blood but this time they are likely going to take a litre from me. I know I won't get away with wiggling out 750ml (last time my Cardio man wanted a litre, I asked for 500ml, he met me in the middle with 750). I know I'll probably be thinking clearer within 2 weeks of having it but it's going through it that I just don't want to do.

I am really tired of being sick. I'm really tired of this flaring up at the most inopportune times. I was absolutely shocked over my numbers because I thought these meds (the designer drugs) were doing such good things in me. And perhaps they are, but my body still does what my body will do: make up for my broken heart.

So in the end, the dr. that thought my neurological symptoms had nothing to do with my cardiac condition was wrong. It was interesting watching him go from being so sure of himself to so confused to realizing that mybody just isn't normal and that even though my vessels may not have plaque build up that perhaps, just maybe I have way too much blood to be pushed through my healthy veins.

I'm amazed at how fast I'm being seen at the "blood clinic". I guess they think this is another emergency. But I'm not amazed that in the end, it all comes back to my TA. It's systemic and I don't understand any doctors that could think any other way. Perhaps that's also my background in Holistic health: it all has a role to play in your overall total, complete health.

My chronic illness has become such an inconvenience. Perhaps I've had a really great few months where it hasn't really gotten in the way. Now that I'm used to it being a bit more stable I am functioning at what looks like normal: working, supplying my own benefits (rather than be carried by someone else), living a little, working with deadlines and sick days etc. As it stands I have a giant deadline looming and of course, my blood decides to multiply itself at a rapidly increasing rate.

I don't have time for this!

Walking

2010-06-27T21:39:00.006-04:00

So I did a 2km walk(hike) in nature today... some of it with elevation, much of it having to stop and drag my ass up the hill but I did it, and just under an hour! I know, the average for a regular person for 2km is 30 mins but I'm not regular!

Although I'm tired from the walk/hike I know it's not something I could have done last fall. One kilometre maybe, but 2, nope. In fact, I've been to that park years before and I still chose the one kilometre walk over the 2k one. I think just to keep my own circulation going I'm going to try to walk once a week in my neighbourhood. (My goal is to walk daily - if I can make the time, but starting with once a week is something I can commit to at this juncture of workload). Practicing the diaphragmatic breathing that I teach my clients during our anxiety group is something that has helped on my walk today. I'm not going to outsmart this illness but I want to live *with* it now.

Next I'm going to look into zip-lining... chances are I might not be able to do it, but if there's a kiddy-line and my Dr. Cardio-man ok's it, then off I go zipping through the forest. I feel alive, in my twilight years: this would be my retirement years according to my life expectancy and I want to live out whatever I can. So even though I still have to work, I am lucky that I love my work. Which is another area of my life going very well (keineinhoreh). Lots of exciting things including my art therapy group getting off the ground. This stuff makes me very very happy.

I'll be contacting my cardio-nurse again because I'm noticing that I'm cold. I've always had a hard time warming up and always felt cold but now-a-days I can't even wear shorts or a dress I'm so cold. I go to work wearing the same stuff I do in winter, minus the long-johns. (Yes I wear long-sleeved top, sweater, pants, socks etc.) I'm wondering if it's another side-effect from the meds. I've learned recently that anemia is a possible side-effect/complication and I am that now. Looking at changing how I eat: getting back to better... for a while there (when the wife left) I ate frozen stuff, the meals served at work (full of salt) if I ate at all. I've gained most of my weight back but struggle with the healthy cooking from scratch thing I used to do. It was so much easier to cook for 2 then. I'm looking forward to going to a Naturopath to help support my healing. Benefits still haven't come... papers still haven't been signed, but unless I hit a client or touch inappropriately, I know my job is mine. Just would be nice to have those papers signed. My new bed can't be purchased until I know for sure. That's my 6 months gift to myself. Finally after all these years a new mattress - new karma (it's my ex's from long ago and her marriage broke into pieces around the same time mine did!).

I like this taking care of me thing... it's so freeing that I'm finally enjoying being single.
I can't wait to tell my mother I'm going to the Middle East!! hehe!

death; entering a hard time of year

2010-06-14T23:48:00.003-04:00

Today sucked. Not even at work 10 mins. when I find out one of my clients was beaten to death.
Tomorrow marks the 1 year anniversary of Thomas' first death - yes there is such thing as more than one death. You know, when you actually die, but technology decides to revive your heart beat... then your body dies later, when there is no more reviving. G-d takes us when we're done. Humans revive them because they're not ready to let them go... or other weird phenomena.

That's why I signed that lovely DNR paper a while back. None of this 2 deaths thing for me. Just one thank you. Not putting loved ones through all that.

Sad, tired and a little burnt out. Booked the day off tomorrow, and of course, July 13th. In Jewish tradition there's yarzheit when we remember on the day of death. But what do you do when there are 2. This may not be kosher, but I'm honouring both. Every day from June 15th to July 13th I'll be spending time in prayer for Thomas.

As for my client... he is no longer suffering. I am sad that he just could not get through some of his trauma(s).

triggers

2010-06-09T21:40:00.004-04:00

On request of a friend, I've been visiting a guy at our hospice part of work the past few days... he's dying of course and he's starting to look like Thomas. He's thin, bone thin, his cath bag is full of blood etc. It makes the 'good deed' rather difficult. But I don't think anyone should die alone and this was the belief of said friend, the only person he knew. So her and I go visit - when she's off work and when I'm off work.
I would only hope that when it's my time to go that someone does such a thing. I can't speak for him, but I hate feeling lonely on this planet.

Sitting there the only thing that comes to mind when I think of Thomas is this: thank G-d he wasn't conscious. I couldn't imagine what this gentleman is going through watching all the sings of death, staring at the walls, losing vision, voice etc. I'm not sorry if it sounds mean but I think it's by the grace of G-d that T was in a comatose state.

It's coming close to the date when he first "took ill". I have that day "off". I can't afford to do what I want (donate a memorial bench) but he's been on my mind of late again.

travel- bucket list

2010-06-06T13:00:00.006-04:00

So I re-found my bucket list I wrote when I was barely 19 years old. I wrote it then because I was told I wouldn't live to see 30. Well, 7 years later, I'm still here and most of the items on my list are, happily, crossed off. Some of the items are so mundane and ordinary (for the alternative girl that I am) but "daring" to white sub-urban folk. Like, having blue hair, which I've done not once, but several times. Same with green hair, a mohawk... you get the picture.

There are of course several items I won't be able to do because of cost - not health. I used to think I couldn't climb pyramids - but I did. OK, I never reached the top as a direct result of my health, but I reached more than 2/3rd of the way up; enough to look across the sea of green tree tops. It was awesome (until I looked down from the very narrow/steep steps). I pushed myself that day and the photos show (swelling, etc. afterwards) but I did it! Heck, my sister didn't even climb and she's as fit as a mountain hiker (which she does in Cali/Venezuela). I think the one or 2 things I probably won't be able to do are jump out of planes and bungee jump. I've always joked that I'll bungee jump, when I know I'm on my last day, that way if the jumping kills me I would have been on my way out very soon anyway.

So as far as travel is concerned: I started actually looking at fights to Israel, even though my trip fund is only half way there. Damn seat sales they tease me. I started looking at Safed and all the sacred sights I could possibly go on. This is exciting.
Heart disease be damned, I'm going to the Middle East! Not sure when (as I'm not booking anything until those papers are signed and I have a much higher balance in my travel account). I'm hoping before next Pesach. I just have to make sure I break the air time up with short flight (3 stops is much better for my health than 2 long ones etc.) (embolisms).

I even have the itch to just make Newfoundland a reality, until I factored in the cost of the ferry. Oh well, it's something I can let go of, for now. I justify my bucket-list item of driving from coast to coast as "land coast" - which I've done.

I continue to pray that these meds continue to work a miracle in my life AND that I continue to have whatever coverage is necessary for me to acquire them.

Now to learn stick so I can drive a sexy cobalt blue Jeep YJ across a dessert (New Mexico??)...

Most of all though, my work is fulfilling my other life goal: have a fulfilling career related to my education that helps others and stretches my soul. I'm teaching this summer semester for the 8th year and it's actually not tiring me out. I get to talk about what I know and teach others how to use it. How freaking awesome is that?

my OWN benefits!

2010-06-01T22:05:00.003-04:00

Well, today marks the day I started full time employment 6 months ago. It's still another 2 or so weeks before the actual probabtion is up and benefits start (because I was part time the first 2 weeks I started because I was ending my other jobs). But, I'm still here...

I think back a year ago to where I was health wise and I feel like a miracle has taken place in my life. I am able to work full time (more than actually, due to my little workaholism issue). I feel like I'm 33 again. At 33 I was much healthier, didn't need oxygen every single day and could work full time. That's me today. I know though that it's not "getting any better" only because some days (but not many) I come home feeling like shit, legs all swollen and having a hard time breathing only to find my little designer pill in my compartment: yup they have that much impact - my dr. cardio man knows it.

I'm excited to have my own benefits, to start accupuncture to support my kidneys, my liver etc. I'm excited to have holidays. I'm excited to be looking forward to taking a holiday: a real live trip to Israel, to carry out some of my "bucket list" while I still can.

My workplace doesn't know about my serious health issues. They know I have something akin to asthma, but while still under probation I don't think it was wise to disclose such info. Besides, the more I learn about work environment in other counselling agencies, the more I love mine. Sure mine's more fast-paced, in the trenches kinda work (frontline) but the self-care that's almost indoctrinated is really appreciated. There was an agency whose work I really valued, an agency I held as a sorta sacred golden cow - somewhere I'd picture myself in 2 years (if these meds help me work then). Recently I found out through informational interviewing that agencies' work policies for counselors: there are no clinicals, no debriefing, no CISD (critical incidence stress debriefing), no team building, etc. and even though their rate of pay is of course higher than mine (by only a few dollars) I realized that I would be better off to stay where I am. Not only will my mental health love it (we are also encouraged to practice self-care and take days off to avoid burn out), but my physical health will too.

You know, I gotta tell ya, I really don't feel like I have limited time left. Perhaps practicing mindfulness/awareness has also brought me closer to the 'here and now' that I'm not overly concerned about tomorrow. Either way, it feels very freeing. And exciting (accupuncture here I come!!)

moving on

2010-04-27T23:31:00.006-04:00

So I haven't written much lately for several reasons. One of which is that I am extremely busy between school and work that I don't even have time for Facebook (aside from the 10min visit to see how every one's doing via status update). Another reason is because I'm a little stuck in what to write about. I've been doing lots of academic writing that this free-flowing experiential stuff's got me stumped right now!

The final reason, that has the most impact is that several weeks ago someone very close to me (no one knows this person!) challenged me. I'm finding that since that day I'm walking a very fine line in writing about living with the limitations of illness versus just plain pity seeking. I've never wanted pity from anyone. I've wanted to be understood, but not pitied.

So, when I approach this blog to write about challenges to house-keeping, living etc. with what I've got I wonder, "what's the point". If this one person sees it this way, could it be that other people do to (don't answer that, I'm not writing for answers). Perhaps what this person said should, in the end, have no bearing on what I write. Perhaps this is yet again, another case of the healthy don't comprehend what it's like to live without health. Like, the other day I commented to a new friend how this summer will be a summer spent in the city. No more camping for me (right now anyway, until I meet someone else). And, of course, I got a blank stare. I had to explain, how, even with car-camping, the whole outdoors experience takes a lot out of me and that without a spouse (or g/f) I can't lug tent and gear from car, even if it is only 15 feet away . Setting up tent tuckers me out. I would be blue the rest of the weekend. I feel like I'm trying to "convince" people, that no, 15 feet IS a long way to lift heavy equipment, and that NO I CAN'T do it, no matter how much you poke me and say "aw c'mon KAt it's just a tent!" People don't want to hear it. But, I should be used to that by now right? Not really. I was lucky that I had people around me who knew, or if they didn't know, would be polite and accepting that sure, despite what I look like, I hae limitations. When you have new people in your life you have to explain everything all over again. I am tired of doing it, but when I don't I find I'm being bugged for being a poor sport not joining in in their fun.

I've also realized that this year I won't have a garden, the weeds are already out and I've not plucked them. I wonder who I will get to do my lawn. It's those things that healthy people take for granted: the ability to go camping! I'm sure I could bug my mother once in a while, but my parents are no spring chickens either. Otherwise, there's been no one else around, no one else that's even half as close as a spouse was. I'm making new friends and I just don't want to have to start the whole health-disclosure thing all over again. So, these people have absolutely no idea just how fragile I am. It's hard turning down invites to go dancing because I can't actually dance nor do I have the energy to stand all night. It makes for a lonely life. Makes me think seriously about that Phd. I am after all juggling work and school now. I'm also seriously thinking of moving into an apartment. I can't handle having a yard. With spending nearly one fifth of my income on these meds (thankfully I have some coverage), I'm not sure I will be able to afford snow clearing next winter. We were freakin' lucky that we had next to no snow this past short winter.

So, I'm living in this new world, filled with newness but carrying the same old burden of heart disease, but this time alone. I'm the only one at my cardio appointments now, the only one looking at my notes, ECT's and not understanding and not being able to get clarification from my ex-medic-ex. My cardio-nurse has expressed concern that know one else has "access" to me (whatever that means). Ya, I'll just give my parents power of attorney and access to my files. NOT. Never in a million years.

Every day I deal with homeless addicted men. Nine times out of ten when we retrace steps to their downfall, a divorce is usually in the picture. Now whether the end of a marriage came before or after their full throttle battle of substances is not relative. The loss of that kind of support means a loss of a relationship of course, a social community, social standing, sometimes job-loss, loss of children, loss of love, loss of a dream and loss of a sense of family. The impact of divorce on this society is so devastating. My wish for future generations is this: spend the money on couple therapy. It is always worth it; even when you think you can't afford it. You can't afford divorce more. Trust me. Divorce takes so much more away than the ending of a relationship. When you're sick, you're doubly screwed. Be it sick with physical illness, or mental, in the case of substance abuse (yes, it is a mental illness according to the DSM-IV). (get this, the apa wanted to put codependency in the upcoming dsm-v but realized after much debate that to do that would mean that every human could be found in there; which; imo everyone already is). And also just to clarify, I'm not blaming divorce on these men's substance abuse issues. There are loads of other traumas that are at the heart of the need to escape ... however, marriage did provide a stability that they once had to be able to cope with said trauma. The breakdown of a marriage in the case of my homelss guys, almost always lead to homelessness which plays havock with addiction issues (usually spiralling it out of control- then again, there is no such notion of control when it comes to addiction).

I never 'believed in' divorce then, and I still don't. It is devastating on so many levels, for so many people involved, not just the couple.

Cardio day

2010-04-20T22:49:00.002-04:00

I had my cardio appointment today... seems like my liver is doing just fine with these new meds. Keineinhore.
My kidneys could use some supporting. It hasn't helped that I've eaten mainly work food since Dec.

Of course, Cardio-man reminded me how much of tax-payers' money is going to help me breath better.... no comment.

I've had a very morally stretching day at work, this is all I have left.

another lesson in the manifestation of illness

2010-03-21T15:49:00.005-04:00

I'm feeling a bit better today. I spent the day vomiting yesterday - and if you know me well, you know I hate, loath vomiting. I will do anything to avoid it.
That wasn't the case yesterday.
I was able to get my ass out of bed for my morning massage and the woman also happens to be an energy worker (doesn't matter what kind) and doesn't know me from a hole in the wall. I told her the area I needed work on because the pain meds weren't working. Well when she got there, it's as if she could see right through me. She started some energy tapping, asking if I've been doing a lot of work on (xx) issues because it was really really open... it was an interesting session. A little less massage work than I would have liked, a little more answers (more than mr. telehealth nurse). It made sense why none of the pain medications were working though. It wasn't completely physical.
Within hours after that it was all coming up. It wasn't a virus, it was grief work. The stuff I've been doing anyway, but all in my head.

The Chinese have a theory about illness. It's called Feng Shui (yes, the same system that people assume has to do with furniture placement. I can assure that it's not). The letters ESP in their system don't stand for Extra-Sensory-Perception. It stands for Emotional Spiritual Physical. The ESP's of illness, dis-ease. We in the West are only just starting to buy the theories that mental or spiritual issues can cause physical illness. Our bodies store so much in formation. In my opinion that's why Fibromyalgia was so misunderstood for so long - thought of as something psychosomatic - which, it is, all in our heads. But originating from our heads doesn't take away for the reality of the physical illness.

I think this weekend's illness manifested not through viral contact (G-d knows I get enough of it at work) but through a culmination of perhaps being susceptible to viral infection due to all the work I've been doing spiritually/emotionally and timing (I happened to be co-facilitating a group on chronic-PTSD on Fridays. Sometimes it's the least favourite part of my job).

The thing about not seeing Western medical practitioners is that come Monday I don't have a sick note. I also don't have anything (proof of sickness) to give to my supervisor for why one of my sections due tomorrow isn't ready. Perhaps some footage of me kneeling over the toilet bowl would suffice (if only I had a camera).

Today, I'm going to try to eat and hope that it stays down. I haven't eaten anything since Fri (or at least kept it down). So much for my attempts at weight gain. :)

when pain meds don't work I become whiney

2010-03-20T00:16:00.004-04:00

It's times like this I miss being married to a paramedic. I left work earlier today because of sudden chills and lower back back.

Okay, flu-like symptoms. Maybe something I hate (or haven't eaten properly).
So I slept most of the evening, or at least tried. I have unbareable lower back pain. I called telehealth and they were more interesetd in getting my address right than answering my question. I refuse to give them my address because I don't want an ambulance called. Way too many people abuse the system for non-emergency calls. Way too many people. I know, I was married to a medic.

Besides, unless I'm having a heart attack, there is no reason for an ambulance. Even that doesn't constitute calling them, I am DNR afterall so what would be the point?!

So here I am, laboured breathing, having taken pain meds, laid on a heat pad, and still nothing. The pain is unbearable... I hope it's not any bad virus. There's lots of shit I'm exposed to at work.
It's starting to make me a little nervous, especially when I did an intake for a guy twith TB the other week.

I just had to post... to whine to someone, to be heard. It's hard adjusting being single and sick. Very hard.

pain pain go away

2010-03-14T15:46:00.003-04:00

It's raining today. What a good day to do some research (for a paper I have due very shortly). Except that the body decided to accept some long overdue pain.
Yes, pain of this sort is back. I haven't experienced it since before these meds (not on this magnitude) and thus, no work to be had.

I don't think this paper will ever get done.

I haven't been brought to tears like this by pain in a long time. Better than it being daily.

a blast from the past

2010-03-03T22:34:00.004-05:00

Ok, so I'm going blow my anonymity - partially. I'm in a program of recovery. Everyone close to me knows I have big co-dependent issues, which is partially why my marriage didn't work. My recovery has been my saving grace of late. Ok, let's move on...heart stuff:

So I'm at my meeting tonight after work and this older woman comes up to me and asks me if my name is XXX (my childhood birth name before I legally changed it).

I can't tell you how weirded out I felt. Anyway, after asking her who's asking she told me who she is. She tells me that she was my grade 2 teacher at xxx school. And, of course, I went to the school she mentioned. Apparently (according to her) I haven't really aged. I know this, but I don't want to sound cocky: I really look the same (except the long hair that's gone; which is even shorter since I cut it again today, ah the freedom). I digress. So she tells me she's always wondered what happened to me because she knew of my heart disease (all the teachers did because I couldn't do gym, I was to be watched since I was very fragile etc. etc. etc.).

She was astounded that I was still alive. I was astounded that she remembered me after all these years. I try to think back to grade 2 and I can't recall it. I can remember kindergarten 5 and even 4 (I loved that art easle and yellow smock). I even recall grade one and the girls I didn't like, grade 3 and the retard room us slow readers where sent to (the janitor's closet since there was no room for kids with learning/reading issues back then); but grade 2: no memory.

So apparently my little heart became a wonder for a heartfelt teacher. Who woulda thought.

In 6 days i turn 37 and I'm telling you, I love these meds. Expensive meds. I got the bill from my pharmacy for the remainder (non-insurables/provincial insurables) yesterday and I tell ya, if it wasn't for what they're doing for me I would stop them because I'm starting to not be able to affrord them. Meds or trip overseas. Yes the choice is clear. But it's a let-down.

The ability to work and still be alive, breath and even feel good: no let down whatsoever. My Creator has something left for me to do still or these meds would have not worked, or made it my way.

To see someone from 30 years ago who wondered if I'd still be alive, and to be here, cane free, wheelchair free 30 years later: how can I not walk on sunshine today?

drive free

2010-02-21T22:20:00.007-05:00

Just got back from Montreal. Another fun-filled weekend seeing people from my past. I can't keep up with the single life-style. I'm not 26 anymore. Hell, a decade of sub-urban marriage really quietens the hard-edge girl I used to be.

I used to live on the edge. Anyone who knew me before I started settling for my (ex) wife knew that I always lived in the fast lane. I don't mean that I'd jump out of planes like another thrill-seeking friend of mine but that whatever I did, I'd do it with passion: that joie-de-vivre I was raised with. The french girl in me I lost when I married a unilingual anglophone. A culture and mindset was set aside for compromise/communication. I allowed myself to just let go of that part of me that makes me sparkle. I miss her (me): mon p'tit francaise, meine liebling.

Well, true to my old self, I did the Ott-Mtl/Mtl-Ott route in an hour and 40minutes. When I was married I was so much more responsbile, becoming nervous when I'd go over 122(km/hour) but now I'm back to living in the fast lane. 133 baby, all the way. (Hey, it's not like I was speeding, the folks in the slow lane were going 125!). When I got married I fell into those damn social norms I used to always rebel against: be responsible, slow down, be white, middle aged and straight-like. None of which I am (ok, white by birth only).

I lived life in the fast lane because I knew I was going to die young anyway. Except my fast lane still looked pretty mild-mannered compared to those who really lived the fast life (my clients for example: using crack, heroin, cheating death every day). My attitude lived in that lane more than my actions. Afterall, I knew at a young age if I actually engaged in what my fast mind wanted to try (bungy jumping, cocaine, etc.) that I would be dead in a heart beat. So I became responsibly wild.

Then I got married.
and then I became super responsbile.
Then I got separated
and then I discovered myself again.
And now,
I allow her to be her wonderfully crazy-ass life-loving and living wild self-again. I am going to die anyway, I might as well enjoy my self in the process, while I'm able bodied enough to travel down that road again. Literally, the highway between Ott and Mtl was my home for years in my 20s. I've rediscovered myself on my way to going back to a life I once lived.

I've discovered I can't quite keep up. I just can't dance the night away like I could 15 years ago. But I can enjoy just being there - enjoy the process called life. I've discovered I'm much more than I ever thought I could be and that perhaps I can be more still. I've discovered I'm not done pushing myself because I'm not done. Until I take my last breath, there's always a chance for change, growth, renewal, and new discoveries.

a single plot please

2010-02-11T15:45:00.008-05:00

So it's a beautiful sunny day in downtown OT. I'm feeling energized because we've had incredible weather the past few weeks.
My health is stabilizing. I've been to the dentist and the doctors and everything seems where it should. I am so happy to not have any cavities for once in my life. :-) I had a cleaning, my first in 3 years because I haven't had insurance. Heart patients should have them every 3 months because the mouth is the first path to possible endocarditus complications. Meh. I'm going to die young anyway.

So, feeling pretty chipper today, I decided to tackle the question of my burial. I'm working full time now, and am able to start what I call my "plot account". I have been feeling very proud that I can be responsible enough to do this - not for anyone else anymore, but so that I'm not left high and dry since it will be me burying me now. And of course, it starts with the phone call. Society and their social norms. The guy asks what kind of plot: family or single. So, I say single. He clears his throat as if ashamed for me and asks again, "so no spousal spot". No asshole, I have no spouse anymore - I'll be lying in all of eternity next to strangers because my spouse can't keep a commitment... that's what came to mind, but I politely said, "no, single".

So I get the prices. Either they've gone up or I completely forgot to calculate the actual burial costs (ie the guys shoveling the gravel over me) in my first calculation last year of about $3,500. Now it really will look like $5,000. I'm rethinking this pre-planning thing. I mean, the only reason I thought that it was something important to do was because I wanted to relieve my life-partner of such a burden. I gave too much thought, compassion and concern to leaving her behind. I cared too much to want to take care of this part for her, to relieve her of all those worrisome details. Now, I have no ties. I am free (not that I ever wanted "freedom" - but that's another post).

I'm single now - I don't have to care about who's left behind. I don't have to worry about taking care to relieve some of those stressors. I can, if I want, leave it to the government to bury me. After all if I can't even afford a marker, how would it be very different than if I don't preplan and just get the stick sticking out of the ground?

Maybe I should just take that money and go overseas. I'd get more out of it that's for sure. Now that I'm living for me and only me, I might just do that.

a spiritual mountain dies today

2010-02-10T23:05:00.004-05:00

Today I got news that a very beautiful, very spiritual woman finally passed to the other side. I say finally because she's been battling a very aggressive type of cancer for a while now. It's ravaged her body and now, she no longer has to struggle. She can be at peace with her spiritual self.

I barely new this woman but she has impacted me so thoroughly, like most people who are on some sort of deep spiritual quest. When you meet and know them, you instantly get to see their essence.
The very first time I met her over 2 years ago I knew she had something important to say - to the world, and something very important for me to hear, eventually.

I've had the blessed privilege of receiving some of her teaching through the women around her. As she got sicker, I'm sure there was room for less new people so I didn't 'bother' to wedge my way into that circle, but spiritual teachings came my way anyway. I am blessed to have known this woman.

She is a mountain of spiritual connection - someone who, in this lifetime, with illness, could manage, unmarried, but not alone, anyway. It was only a few short months ago that I found out that she was going through this unmarried. Her strength to have lived through and then died of her given illness has mesmerized me. If she can do this alone, so can I. If she can be a mountain, than perhaps I too have the strength to be a tall strong, unmovable force within myself.

Thank you J- for being who you were - and sharing all of that strength with all of us, and for helping me see that dieing unmarried is not a tragedy - you did it, and I am inspired by your courage, strength and love. May you rest peacefully in the afterglow of your spirit-self. ...Blessings...

mopping & spiritneuroimmunology

2010-01-27T23:33:00.006-05:00

I just finished mopping. I haven't mopped since before shit hit the fan in this house. Needless to say I think I need to hire someone to do house-work. I now have chest pains because I actually had to scrub (it's been a long time, the floor was a mess).

A year ago this past weekend I was in the Heart Institute, learning my fate: the rest of my life. This past weekend I felt pretty damn good. I've always believed in spiritneuroimmunology and true to this 'science' the more spiritually connected I am, the better I feel. That doesn't mean that I don't get sick at all, in fact I have this nasty cough and sore throat: something I think is going around anyway. Either that or I'm getting everything under the sun from my new workplace. I wouldn't be the first person to have their immune system tested in that environment. I work with some pretty sick and diseased people.

In fact, just before teaching my class I walked right past a stretcher holding a filled body bag. Someone in the hospice section of my workplace died today. This isn't the first time, but it is the first time that I happened to run into the body. I'd lie if I said it didn't trigger me. All of a sudden visions of a long metal table draped in a white sheet flashed through my head (a common scene when I stayed on the palliative care ward this past summer). Today isn't an anniversary day or anything significant like that. Today was just a sad day. Sad for all the losses I'm getting through from 2009. Sad that so many people have so many losses in their lives, sad perhaps because a co-worker of mine was also having a hairy day. I have a great team and one woman in particular I really jive with. She knows of both my losses, only because she herself buried a husband at one point in her life and was also in the same program that I am now a part of.

No one however knows of my health limitations. Some have guessed that I'm a bit more fragile than others because I always take the elevator to my 3rd floor office, and because of my purple fingers. Walking slow doesn't tip anyone off - co-workers probably chalk it up to serenity or mindfullness. One co-worker is always walking slowly, with intention, never rushing to programming etc. It used to bother me in the beginning, her lackadaisical attitude, but now I get it. Why rush. Why? She practices Mindfulness based meditation. I started reading on it and am now signed up for a course in March - both for myself and my work. I am one lucky girl to do what I do. I have gratitude everyday for liking what I do, even though some days are just so damn hard (there's only so much of other peoples' traumas one can take). I know that my liking my job has everything to do with the fact that my health is not fumbling forwards again. Sure I can't feel my left foot anymore, I get the tingles again, things slip out of my grip, but after a year of this, you get used to a new norm. I also know just how lucky I am to live in Canada, even with cuts to health and pharmacare, I still have somewhat of a bit of coverage for these medications that also help me work. I still have a few hundred dollars a month to pay myself (after the deductable) per month, which on my salary is a lot, but what I think they're giving me is the ability to live (with limitations obviously): I don't have to spend most of my days at home "taking it easy" just yet. Quality of life is imperative. I'm not so sure what I'm going to do once I am no longer covered, after the divorce and all. Right now, I'm taking it one day at a time - literally. But, on that note, I've also lost count of how much money's worth of meds I've taken thus far. I lost count after $10,000. Yes, $10,000 in just a few months, of pill-taking! It is absolutely insane - it's no wonder they come special delivery. It's a $4,000 box that comes to my door every four weeks. Four grand, and it's a small box!

For now, I keep praying, working, breathing, one day at a time. If my spirit is healthy, my body has a fighting chance. I've been blessed to be on this planet one more year, despite all the tragedy, all the losses, life is still (painfully) beautiful.

So ya, spiritneuroimmunology: big word for big connections!

here we go again

2010-01-11T16:33:00.001-05:00

So it's either that time of year or the meds are taking a dip.... it's back -the not being able to feel my limbs again. I noticed the other day when I was putting my shoes on and couldn't actually feel my feet. It doesn't help that I've slipped a lot lately, not down a full flight, but noticeable nonetheless.

Back to knives slipping out of my hand and falling.... I'm hoping this is momentary.

New Year

2010-01-03T14:43:00.004-05:00

So yes, it's a new year, a new decade. i never thought I would see 2010, when I was five anyway.
So here it is. A whole new year ahead of me, looking so different than I ever wanted it to be. Sometimes the Universe has other plans, sometimes you fuck things up, sometimes it just is.
In reflecting on the year that's just past, the year to come I've come to realize that mourning is a way of life for me. This past year began with mourning the loss of my future, but in that I had chosen to spend whatever time I have left with the one I love. That was last years' "resolution". This year I don't have that choice. Last year was also spend mourning the unexpected and traumatic loss of a young life. That reminded me just how important it is to have my final wishes be known, how important it is to bring comfort and to support those you love and let yourself be supported. I started this blog a year ago so that the one who supported me at the time (wife) wouldn't be so alone in all that was required of her. She is now gone but my illness hasn't changed. My living with dis/ability hasn't changed. I'm facing this new year wondering what will happen on the days I can't get myself up the stairs because I'm in too much pain. I'm facing wondering who will be the one to carry me up since she is no longer here. I feel very dumb and naive for ever believing in "till death do us part". I know that I am a strong independent woman who's lived this long battling a very rare illness that has thrown countless symptoms, complications etc. in my path. I know I've figured out a way to live, despite it's very long, prolonged dieing process. Most of that "figuring out stuff" has been about life choices, work choices, boundaries on what activities and how much time spent on them in order to "save my energy" (as my mom used to always say when I was younger). The past year has shown me a little bit of what's to come. I've had days and nights where I've been in too much pain to get out of bed, or to get out of the car. I've always had my life partner there. I really don't know what I will do anymore with the physical stuff now. I'm mourning much more than the loss of my best friend, my lover, my spouse, a decade of my life (spent with her). I'm mourning whatever "in/dependent" future I had left with her, I'm mourning the loss of that "caretaker" role that she took on because she loved me at the time. I realize that when it gets really bad towards the end I will probably be in a hospice, with nurses around me to do all of those things. The thing about being married is that sometimes you can avoid the strangers of the hospice world and die in your own home. I can't do that anymore. Some of my wishes I want can't happen anymore because I'm being robbed of my commitment, my security of knowing she would be there 'till the end.
Last year, as hard as it was to write my directives, sign papers, I felt empowered that I was doing the right thing: not only for me (that I'd get what I want, for the most part) but for the one I loved: I was relieving her of many of the hard decisions she would have had to make.
Now she doesn't have to make any, including whether or not to show up to the funeral.
The sucky thing about being sick and single is that when you really need the help, it's not there. Or, it is, but by some strange nurse/caretaker you have no emotional investment in. Who wants to be carried by a nobody?

I haven't been feeling well the past few day - internall, nothing contagious. With even regular "sickness" I've found it very difficult to do the day to day things. I've had no food in the fridge for weeks now and the night I felt really horrible I couldn't go do groceries. I lay in bed realizing that if its' this difficult with normal illness, what's going to happen with the hardcore heart stuff acting up? I'm scared, frightened and sad.
Sad doesn't even begin to express it actually.
I'm alone.
I thought I was alone last year.... alone preparing for the end while everyone else was preparing for the rest of their life, but I still had someone by my side. This year... I really am alone in this. My relationship with my Creator really won't help me get up those stairs!

How can one be happy with a broken heart?:

2009-12-26T13:13:00.004-05:00

This autonomy thing is awesome.

I haven't felt this free in a long time - in all aspects of my life including health. it's true, working job #2 was very difficult and I encountered more dis/ability in being able to do the physical work of the job (standing etc.). It seems that some losses are not so big when you are gifted with more, other abilities. I am so enjoying my brain in work places. This has led to a few very big decisions about my life.

I've decided to quit the retail position. That was a hard decision because the woman I worked for I've worked under at other places throughout my 12 years in that specific retail industry. It's risking saying goodbye to an acquaintance. Signing the contract for the "third job" this past week helped me realize I would still be making more there for half the retail work, and the research project is something I don't mind.

I've also decided that in my quest for self-improvement, my self-esteem is worth more to me than the money I could be making to pay this house (alone). Moving is still in the forecast, however I am feeling empowered that I get to make those decisions. Sure it's lonely (I still cry an hour a day, but after an hour I need to get on with life). The house is awfully big without my other half. I guess that's why I'm keeping myself away and at work. My cats are not very happy with me. They don't leave my side the hour that I'm here before or after work. Right now away from home and at work is where I need to be.

Which brings me to another realization. These designer drugs that I fought so hard for (at the cost of my marriage), are worth it. I have to stress, they don't reverse my heart failure, but I can do my job at work (the M-F) work. Sure I'm exhausted when I get home but I don't feel like I did even 10 months ago. Loving my work also helps. If I dreaded what I did and had to drag my ass, I wouldn't be able to work upwards 60 hours a week and live with heart failure. I just wouldn't.

So some of the big decisions I've made are about how I'm going to treat myself. For so long this past year I was so miserly, not wanting to "spend money" on things I needed because I felt those things would just be a waste (that and it wasn't all my money to spend anyay). Why buy brand new boots if I'm not going to need them in a year. Why replace my broken (but functioning) laptop (my only home computer) if it's just going to be willed to someone in a year or two. I've decided I can't live like that anymore. I'm not going to spend crazy amounts of money (I don't have) because I won't have a tomorrow, but I will "allow" myself the same privilege as most working/middle-class people else on this planet: to have an OK today with dry warm feet! So I bought myself boots, and not just any boots, but Kamik's. It made me very nervous to spend $90 on boots. I never do that (I was raised by a war survivor, we don't spend money on name brands, we don't by brand new cars or brand new clothes!).

I feel empowered.
I have no idea what the Universe has in store for me or how long It is giving me but I've also decided that I'm going to live - what I mean by that is, I am visualizing health. I'm visualizing vitality, I'm visualizing a slowing down of the degeneration, I'm visualizing these meds opening my airways, and I'm meditating more.

Sounds silly I know, but this was exactly my field of study: psychoneuroimmunology/ spiritneuroimmunology before I changed my thesis (to be more work related: creativity and addictions in relation to stages of change theory). Your mind does impact your body. I'm living proof, I was supposed to die at 2, then 9, then 12, then.... you get the picture. I'm a stubborn ass and might as well put it to good use.

My final realization of the week: if I can't have what I've lost, I might as well give myself something I never thought I'd get. I'm taking my self on a pilgrimage. I have a few destinations in mind but the where at this point is not important, the decision is. By the end of this year, by the grace of G-d if I'm still well enough to travel I'll be flying across some ocean some where. If I have to scrimp and save I will, g-d knows I've lived off a tighter budget before.

I'm excited. Heartbroken, but excited, happy and free.

making up for lost time?

2009-12-18T00:36:00.005-05:00

I'm not quite sure what's going on with the Universe. I'm wondering if She's either trying to make up for this past shitty shitty year or if It's trying to make sure I don't feel so lonely and unwanted before my health declines further.

I just got another job offer from a job I didn't even apply to (a job I did a year ago wants me back). And I'm actually considering it - for 2 minutes I found myself trying to see where in my schedule after my 50 hour week I could squeeze another 15 hours in. I do need the money, and I could pay off my entire burial by March, but it could also be by April that I would need it if I do this to myself. I don't have another house-mate and without my ex's portion I am now screwed to cover the entire "rent". Yeah, I'm resentful that she could just walk away from all these responsibilities with just one easy signature. Jerk behaviour aside, I'm now stuck with this financial responsibility. I don't have the luxury of just running away from responsibility. I've always had the weight of the world on my shoulders and a sense of responsibility that sometimes doesn't even belong to me.

That weight has always caused such stress on my system that now I am forced to either stick to a meditative practice or let the stress get to my heart. I'm not suicidal so my choice is to find a way to deal somehow and not run away like some people can choose with such ease and lack of consequence...

Two of the jobs are actually jobs that require my education and or training skills - you know, decent pay (well, low cuz it's in social services but a hell of a lot more than I've been making being dependent on a partner). The other jobs is, of course, retail - mainly because it's the busy season and it was easy to get. Thing is, I've done a few shifts now and I can't for the life of me see how I'm going to get through. A year ago I did retail (also before the holidays) and I was purple by the end of the 9 hour shift. Now I'm purple by hour3 standing on the floor. It's doing the same thing a year later with less stamina that shows me exactly where my increasing limits are highly noticeable. It makes me sad - it limits an entire world of "easy and immediate" jobs. That entire world is now gone if I'm ever stuck needing employment "now". If I wasn't already heart-broken, I'd say it's a bit heart breaking noticing yet another big limit. Compared to the mutli-holes in my heart, really, retail is not a big loss (just the decline in ability).

As mentioned above, it's not like I can quit this job despite my inability to physically do it. I'm screwed for money. I'm left picking up the very costly pieces.

I know I need self-care, I know I really need to be careful, I'm "disabled" but I also know I can't bear being alone in this big house, alone with the devastation. So I have to fill my time or I will spin into misery and finally I'm at a place where I can say, it's not worth it. Not because she wasn't but because I'm worth more than this ping pong treatment, but because despite who I became while with her, I am still worth treating with dignity and respect, for as long as I live. I, like everyone else, is a child of g-d. My heart will be going into a big locked case - how could I ever trust someone again, not just with my heart, but my health? My health is something very intimate for me. Until last January when I was in the Heart Institute I didn't share so much about my condition. I only became more open because of the woman who took care of my heart (physically, legally, emotionally) because she couldn't do it alone anymore. Nor should she have to. No one person buries another. A community needs to step in, get them through. Now? I have to take care of all this from the living end so strangers can follow a paper. I will be so relieved when I have my own plot, when I know if nothing else, I can bury myself. What relief that will be (but it still saddens me that it won't be 'her' following those papers). She was supposed to build my pine box (we Jews get buried in simple pine boxes, and I as a witch also like the simplicity and ecological aspects of Jewish burials).

Humans are full of "supposed to's". Don't let your life pass you by filled with supposed to's. Life is too short, love is too precious. And no one really realizes it until it's too late. Because there is such thing as "too late".

the in-betweens

2009-12-09T22:27:00.003-05:00

When you get to the evening of your life (the last third) you start marking the in between moments such as half birthdays. Today I'm thirty six and three quarters.

Today I also received my total drug consumption (from the speciality pharmacy that dishes out my DD's). In ten weeks I've consumed over $10,000 worth of meds. It's sickening and scary that medications cost that much. That's fifty-two thousand dollars a year. For that I could have a new heart and lungs.

So for my 36 3/4 birthday I stomped through our first snowfall combined snowstorm. I wasn't really ready for this impending winter because it was not even one week ago that it was mild enough (at the beginning of December) to burlap my trees without instantly freezing. Usually that little of a transition is havock on my lungs. Today, not so bad.
This week, not so bad. I still find I'm getting out of breath negotiating the snow banks, but I'm impressed. For 10K there better be something noticeable.

I've been gifting myself with time. I'm filling my schedule again. I am now entering a period of working 7 days a week at 2 jobs both of which are new. (It's out with the old, in with the new).
I'm purposely filling the time "my" tribe has left me. I save my time for true friends and that time is sacred to share with them since they're still here. I'm saddened by the loss but comforted by those left who are here without judgement - those with love in their hearts. However, there are times of loneliness that I can't bear just yet and so I've filled it - if not with work, then with the research required at work 1. But I'm excited. So excited, that even though I am in the evening of my life, I can rewrite everything, give myself what I couldn't get from my significant other: time. So, on my way to work I gift myself with listening to (yeah yeah) new agey meditations and spiritual audio CDs. Not only does it help the milk-run pass much faster, but I'm believing again what I should have believed long ago: I am worth more, that I've supported and and given so much this past year and now I have to support myself. No more free giving, only freedom.

And more is coming.
I have hope again, I have connection again - to something much more important than some mortal that just couldn't live up to love. I'm connected back to the eternal.
And whether She takes my life in 3 months or 3 more years, today I live to my potential, not limited by loneliness.

Afterall, we all die alone. So why should it bother me that I will die alone. Why should it terrorize me? Hopefully I will be at job 1 long enough to earn enough to buy my plot. After that, it doesn't really matter, because if I can burry myself, in the end, that's all that matters. No more leaning on people I thought were there 'till the end. There is no such thing. People are human: they judge, misunderstand, take sides, do whatever it is they do because that's how they are, forgetting that time is precious and that we're here to love.

Me, I'm going to make sure that my advanced directives are always with me because afterall there is no one to call anymore in case of emergency. That makes me sad, but I have enough to be sad about. At least being able to give myself a plot I can be rest assured I have a place to rest, eternally. And I might need that after working 7 days a week!

9 1/2 weeks

2009-12-02T19:06:00.004-05:00

It's been nine and a half weeks since I started these Designer Drugs. They haven't miraculously cured my heart disease - nothing will do that except death or perhaps a heart/lung/liver/kidney transplant.

They have given me a little more fake energy. I call it fake because I now feel like I can do things, but when I go do them, within a few minutes I realize that no, I can't lift that 15lb box. (well, I can out of necessity but that I'm still gasping for breath and creating pain in my heart and lungs. This is what being alone does to ya.)

This fake energy has helped my emotional state go through this hell. At least I believe I can do it alone (even though I can't). Belief is half the battle.

2009-11-24T16:39:00.003-05:00

I'm not really sure why I thought my life was worthy of memoires. That was the point to writing this blog: that one day I would have enough entries and writing to gather up for some sort of memoir about living with this rare congenital (and unfixed) heart condition. Who did I think I am?

worst fears

2009-11-20T21:13:00.009-05:00

My worst fears are playing themselves out. I don't fear dieing young - it isn't easy but it's happening.

I don't fear dieing in a hospital - it's not my ideal, but I can't control it.

I don't fear dieing in my sleep - OK, some nights it terrorizes me, but in the end it would be a nice way to go, just not for the person who has to wake up beside me.

I do fear dieing alone, of a broken heart both literally and metaphorically. And that's what's happening.

Some days I don't know which hospital I will end up in first: the RO or the Heart Institute. Between the tachycardia (brought on by stress/loss) and the actual stress I'm one big ball of BROKEN. And I'm alone in that brokenness. Well, I do have a few friends on my "side" of things. Everyone else, gone.

This year has been a record year for loss, from losing my future with my cardio-man telling me this is the last chapter in January, to financial loss (I had to dump 2 jobs due to my health), to losing Thomas, to losing my legal footings (power of attorney etc.), to losing a long-time dear friend through a move, to losing my home and my life mate to losing my "community/tribe". I'm shocked actually that I'm not in the RO right now. Even if I was, there would be no one to make decisions on my behalf.

The only 2 women I trusted enough to not take sides and be my power-of-attorney (for care/hospital stuff) are far from my heart. One now lives 7 hours away and the other is moving away. The security I thought I had about my health and the decisions that would be made/carried out when hooked up to a ventilator (if I even get that far) are no longer secure. That scares the shit out of me that except a piece of paper with my instructions, no one will be there. No one will be there. No one has been there (OK, to be fair, 2 of "my friends" have been. But no one, no one of "ours" have been). Yet another loss.

No one will know if I die alone. I don't have that many friends and that facade called community is disappearing with the woman walking out the door. Splits definitely divide "friends". It's sad that blood family really is all one has - at best. Friends and community, as I'm learning, as much as there's investment and built up parameters, are just that, a facade.

I looked at an apartment in a "crack house". Alraight, it's not officially one, but it is designated social housing. My name miraculously came up on the social housing registry (I had put my name down about 7 years ago and the timing couldn't be better! I have no income, no wife, no life). So I visited the place/offer, and it's OK, I can even have my cats with me. But all I could envision walking through the place was me dead on the floor and the only reason someone would know would be the stench that my neighbour would smell. Living alone and dieing alone is my worst fear and it looks like it may come to fruition. Yeah me. This is what I spent all those years building, investing in, only for her to leave me?

Granted, we never did put ourselves first, we never found the money in our tight budget to put towards counselling to help our issues once and for all. We've always been rocky - that's no secret to anyone - but we've *always* been there for each other. Only I've been shut out of her grieving process - yet I shared mine (about my health). I think there's only so much outside stressors a couple can take before each of the people involved crack. I cracked, I behaved badly, she cracked and pushed me away. The she said she said is not important. What I'm writing about is insurmountable loss that humans can't get through healthily without community, friends. I no longer have that. I suppose I never had that - perhaps people were always her friend and I was the tag-along wife. That's the feeling I'm left with. Not sure and don't care; just left with heart break. I just know how alone I've been purging my life, packing it up. It's a good thing I started (slowly) purging when I got sicker - but it still hasn't made it easy. It seemed easier to purge stuff when I knew I no longer needed it because of the shorter life journey. It was my way of making things lighter for my (wife) when I left this planet. She wouldn't have so much of my physical stuff to deal with. (Aren't I always thinking of others?) This purge is much more difficult. It's a "I can't carry this to my new social housing unit, because literally, I can't *carry* this, so I have to part with it. That's tough. Especially when it's not my choice.

So in the end my worst fears are coming to light. I'm dieing of a broken heart. We all knew that, but now I'm also dieing of a broken heart - 10 years; she has my heart, all of it.

sometimes

2009-11-13T13:13:00.005-05:00

Sometimes the universe gives you much more than you can handle. I don't believe in that saying that "g-d" only gives you want you can handle. I thought I did but life just keeps getting tougher and tougher and my health - all aspects of it- keeps getting more fragile. Some days I wonder how I haven't broken yet. I guess I've been lucky enough to have good people around me helping hold me up. Other days I feel completely alone not knowing where to turn to. When my health is low I feel a surge of panic. It has only continued to snowball downwards. It plateaued during the summer when I had to be there for someone else. Now that it's my turn to be here for me I find my energy wanes, I'm spread out so thin I don't know where the real me is some days.

And the irony is I'm more mobile with these designer drugs now. I am not leaning on my cane as much, I have better health days (although the days filled with pain are distinctly worse). All this additional mobility has to manifest into more energy for the next traumatic chapter of my life.

I hate transitions more than staying in the pain itself.

my life with the virus - the pig-flu

2009-11-06T22:07:00.003-05:00

There is absolutely no real information on H1N1 out there. Sure there are pamphlets about how "its a different kind of flu season" out there. But all these pamphlets and government written info sheets provides are tidbit on vaccinations and hand washing. There's no substantial information for those who have it.
And no, I don't have an official swab-test diagnosis. That's because there are next to no places in this city doing the swabs or tests (unless you go directly to the hospital from your family clinic that way the test justifies admissions. I was at my family doctor's office on Monday (although didn't get to see her, even though she was there) where I first got Tamiflu. I'm on my last day of Tamiflu and now have a wicked ear infection. A friend took me back to the clinic today (the wife is passed out, sick too, and my mom wasn't home) where I got antibiotics and even requested a swab - so that I have more information in which to make my decision about the vaccine once I get better. The nurse's attitude was "what decision; you get it". Hm, I thought we lived in a democracy where I had the choice! Seems like even if I wanted the information to make that informed decision, I won't get it. The way I see it, I don't need the vaccine if what I have is officially H1N1. She said it is, of course, she can't say it because she doesn't have the culture. And I won't get the culture because the system is broke, busy and backlogged.

OK I get that.
It's so backlogged and tired that I got 2 Rx's for antibiotics today. I was to fill only one but she gave me 2 because one drug is significantly lower in cost than the other. So the doctor that gave them to me is not a regular to the clinic, nor did she have access to my file (she saw me in the supplies room, that's how bogged down the system is). That's dangerous.

So dangerous that had this woman looked at my chart she would have known right away not to give me one of the scripts that is contra indicative to my designer drug. Lethally contra indicative.

Either way, I'm getting really tried of any good information out there. I'm tired of all the paranoia that clogs up phone lines for 6 to 7 hours just to ask a nurse a question - when one already has it, not some paranoid fear-based questions. Which, OK, are valid but there are people trying to live through this vicious thing! So my pharmacist from the Designer Drug program called (mainly because of money issues) and when I told him what as up he got all serious and gave me some real information. Finally. I now know what too look for (and pray doesn't happen) and how long I'll still be in danger for, for real. Apparently even though the fever is gone, doesn't mean I'm out of the woods. In fact, even when my last cough is gone (or ear infection etc.) I will still be in danger - up till almost 2 weeks after I think I'm out of the woods.

I have to admit, as much as I think I'm a tough little cookie, that kinda scares me a little. I've only heard people like me (with underlying conditions) die from this virus. I sit here with all my Western & Alternative meds pumping through my body on full force for nearly a week now and know from this past week just how vicious this virus is. I've never ever felt so at mercy of an outside illness.

hopefully just another health scare

2009-11-02T20:49:00.002-05:00

I'm not feeling eloquent at all, but thought I'd post because if this stupid H1N1 takes me then damnit I'm going out with a bang.

I haven't had the flu in a long time, like over 6 years long. I do all sorts of naturopahtic things (not including the flu vaccine) to help keep me virus-free in the winter.

Well, if I didn't speak too soon. A few weeks ago I was feeling cocky so decided to give away part of my secret on FB. Yeah, tempting fate. (Or whatever the hell is out there).

This is the first time since Sat. that I've been able to lift my arm - I look and feel like a train wreck. I was listening to the news last night (or maybe it was the night before... dunno, it's in the background to keep me company) and the city is now telling people that they will be turned away for the piggy-flu vaccine if they are not high risk, but get this, aren't going to require proof. They showed one mom who said "if my kids can get it I should too" then they showed another mom who has som eunderlieing condition and a son with H1N1 say "I hope you remember people like us when we take sick and die". I feel for her. Even IF I wanted the vaccine, too many people who think thye're high risk ("oh I work wit hte public") take up the space and contribute to long line-ups. Someone from my extended community here in Ottawa was saying "oh I"m going Friday to xyz clinic". From what I know she is completely and totally healthy. It pissies me off because she is also the same person that posted allt he "pro-vaccine" info calling us that question it "conspiricay theorist".

Whatever get a life.

And so now I"m sick, my fever has only gone up and has stayed at the "I must go to ER" but well, most people who go to hospitals (with chronic shit like me) come out worse, if alive.

Yes I'm on tamiflu- my wife dragged me (I couldn't lift myself alone until an hour ago) to my dr. this morning to get it. I'm damned if I do, damed if I don't.

My cardio-nurse wants to make sure the virus hasn't gotten into the heart lining cayse that (endocarditis) will cause death.

Oh. And Thoma's cause of death "myocarditis" - infaction of the heart muscle (another layer).

I"m gonna crawl back into my deth bed now.

Just because

2009-10-27T21:06:00.002-04:00

you don't have the answers doesn't mean they're not there.

Thomas' story

2009-10-22T02:44:00.005-04:00

I've done it, I have finally written mine and Thomas' story (a draft mind you). I've had this need to write about us, our relationship, since I arrived back from the drama-trauma. I think I'm identifying as a writer now - because it seems I need to write things out to process. I'm a story-teller and telling stories, even if no one hears them, helps me heal. It helps to narrate what was in order to make sense of what is.

I'm hoping that painting (as my mode of expression) hasn't gone by the wayside. I did buy some wood yesterday (to build stretchers). I was inspired on my shabbat-candle-lit labyrinth walk to paint some mandalas on canvas. But yes the story, I've written it, all 7 pages of it. That's 3,800 words (unedited).

I just wish academic papers come this easily and quickly.

I may post a link to it once it's edited. It's too long to post here. I feel very very tired now, it being almost 3am. My Wife left for Van today to bury the ashes. The headstone is ready. I almost feel envious - that she gets to say goodbye. I think that's why I started writing as soon as I got home this evening. I'm hoping to use it in some sort of ritual. I need to formally (ritualistically) say goodbye. I wrote and wrote and hadn't stopped except to wipe the copious tears away. It's starting to settle in, that fact that he's gone, I mean.

I'm eternally grateful my class doesn't start until late morning!

healthy people don't spend this much time chasing eds!

2009-10-21T21:07:00.003-04:00

It seems I know how to dance around the system if not momentarily. I spent the past two days on the phone (literally) and visiting my Cardio-man to somehow figure a way around the mess of bureaucracy. I'm not completely unsuccessful. I somehow managed to secure this month's shipment of medication due here tomorrow at 10am. There's still loads of paperwork that needs to be done but somehow magically they seemed to be satisfied that the paperwork was at least in motion (or, perhaps they were tired of my persistence/pestsistence). That's the thing about me, don't tell me I can't do something because I'll not only prove you wrong, I'll go out of my way to do it.

That stubbornness has worked well for me (for the most-part). I hate that my life isn't easy, but then who's is? I hate that it takes negotiation to get the medication I need (and at this point I don't even know if I need it. Even Cardio-man is on the wait-and-see bandwagon).

So I'll wait and see. My next does is twice the first starting does. I'm afraid to ask how much that is. For now, I've "bought some time" until more papers are processed, stamped, etc. All I know is that this weekend I am having a "filing party". Anyone who isn't scared of paper I'm inviting me to help make sense of my Wife's files - and this is the best time to do it. She's in Vancouver, burying her son's ashes (the headstone is ready). She won't be here to stop me: she's possessive of her filing style. I can't deal with it. Organization here I come!

when you're at the mercy of others

2009-10-19T18:07:00.005-04:00

I'm a Pisces - I need water. My moon sign is Taurus - I need a forest.

(It also means I'm emotional and stubborn). All this I know about myself. And I've usually had a weekly date with the river or a walk in the forest for most of my adult life. I couldn't tell you the last time I was by the water, in the forest. Well, actually, I can and the only reason I can recall even though it's been over 3 months is because it was by the ocean (the best body of water by far) and in an old-growth forest (the best trees by far).

I haven't made time to walk in nature, nor have I really felt safe enough doing so since women started disappearing near my corner of the river. I miss nature, so after work today I stopped by the river - a not so private place - to walk and sit. This same path I strolled with cane in hand today is the same path I used to roller blade along (yes, I used to roller blade!).

Although today was a gorgeous fall day the wind picked up by the shoreline. Leaves skipped across the river and the reads bent over towards the water. At one point I couldn't tell if I was shivering due to the autumnal breeze or the upset in my heart. I think it was a bit of both. Water used to clear my mind - today it made it murky, buoyant, unsettled.

I spent the better part of the morning on the phone back and forth with the pharmacy in Toronto and the "DD patient support program" trying to figure out why my drug wasn't delivered. (It's been 28 days, time for a new box of $3,965 worth of meds). Honestly, I knew why they weren't delivered: I owe them over a grand. I just didn't understand how I would pay that, or why the provincial pharmacare had not yet bridged me in. Frustration increased as I realized that all the paperwork had not been completed. It seems that they are missing stuff from my wife. Paperwork I requested from the Wife over a week ago. Ah yes, the woman who has no inclination towards her own health is now impeding mine. Granted in all fairness I knew this about her when I married her. So yes, it's my fault for expecting anything different. Of course, I was naive enough to think that would change, that I would change her. Perhaps the gravity of the situation would warrant action, perhaps my filing system would be adopted. Perhaps nothing: in the end I sat by the water realizing that no matter how much pushing I do to get things done - not matter how grave the situation is (um, meds for my health!) things won't change. I expected anything different?

Silly me.

Silly me for thinking that, to quote a dear friend "you gotta take care of the living before the dead" is a known concept.

Silly me, for thinking I had any control.

So my Wife is leaving for Vancouver in two days - the headstone is ready and she will bury her son's ashes. I completely understand that she's been a mess the past few weeks. I completely understand how important this is to her. What I don't understand is how the already dead comes before the living.

It's too late for the meds this month - for now. (You know me, I'm stubborn and I'll find some way to get them... it may take time though.)

I never did get that delivery this morning. I'm sure I will be on the phone all morning again tomorrow trying to reason and figure some way around my wife's missing documents - documents which I asked for last week.

In the end I'm really not sure why I ever expected that my health would mean anything. I'm fully aware that her health has never meant anything and g-d knows she's had many warnings (her younger cousin had a heart attack last month). Sometimes these things fall on deaf ears. Sometimes you just gotta deal, and sometimes you have to find away around someone else.

the addict & the sick

2009-10-18T19:54:00.004-04:00

I feel like I've been watching life from afar. Things are not making sense, adding up, lately. Most recently I've been scrambling about the balance on my meds. I know there's a way around paying $1200/mth (my part of the drug covereage) - there has to be, since I don't actually have it. Hell, I don't even make that much a month. Regardless, this has caused me to take a step back and examine the situation.
And it makes me sad.
I can't get over how I'm scrambling to live well on my limited income (for what it's worth) and how some people can conciously choose to kill themselves, each and every day. I don't get it. I'm supposed to get it because I'm writing about addiction, I teach addiction and I work with some dual-diagnosis peoples. But I still don't get it when it comes to those close to me. I still don't comprehend how someone close to me, that wants me to live as long as I can, will continue to knowingly slowly kill herself. She pumps her lungs with shit every day while I try to inhale as much oxygen as possible when I'm not hooked up to that machine.

My heart twists around like a pretzel to know that I can't change the situation - I've been in recovery long enough, I've taught it long enough to know that I am completely powerless over the situation. It doesn't take away the anger knowing that hundreds of dollars are smoked up every month, and those hundreds directly affect me.
My wife smokes.

Some people are lucky enough to take their health for granted and choose to poison themselves.
I don't have a choice - and it pisses me off.

OMG -DD

2009-10-16T10:51:00.005-04:00

Just got off the phone with my DD pharmacy... apparently my designer Drugs are $4000 ($3965) a month, NOT three!
What killed me was that she told me what MY balance was: $1200. My wife's insurance only covers 70% of it and only for a year. So of course, I've been waiting for a stupid letter from them to send it to the provincial plan so I can be bridged. That letter still hasn't come in.

I nearly swallowed my tongue when she said "your balance is..."
For four thousand dollars a month these drugs better do more than open my lungs up, they better reverse the death of my left sided-heart and slow down the demise of my right. As if!

Then I was told that the provincial program requires that I too pay out of pocket... I hate paperwork. I hate that on paper it looks like we have enough to cover what the province doesn't but those paper-work tabulations never take into account student debt, other debt, house-hold expenses etc. They see that mortgage is covered, we're OK. I am so tired of being house-poor. I'm so tired of all of this. I've applied to the feds - I will keep applying but I know just how long it takes to get in and in the meantime I'm still living with illness. It would be nice if it could just go away for a week. Ah fantasy world...

I can breath! I can breath!

2009-10-01T21:29:00.003-04:00

If this is a tiny glimpse of what this drug can do, bring on the vomiting -it's a small price to pay to breath I say.
Today I felt something I haven't known for a long time: the tips of my fingers, talking without getting out of breath, and not feeling like 20 pounds are sitting on my chest.
I felt 20 again. For once in a very long time, I don't feel 85. If I weren't so old, I'd go out dancing!

I hope this doesn't pump up my expectations. I cross my fingers that this is something I have to look forward to. Last week vomiting seemed a high price to pay for feeling the way I did. Today, not so much. My eyes felt clearer (could it be, they're actually getting oxygen to them?)

Again, no hopes (but feeling my fingers felt awesome!)

Yizkor

2009-09-29T21:52:00.005-04:00

You don't think about it until it affects you. Death, disability, loss. We all know life is full of loss, and according to one of the primary koans of Buddism, life is suffering. It's so much easier to go through the motions rather than fully show up - that would require paying attention, much too much attention. And we modern humans just aren't able to slow down enough to do that.

Monday was not my first Yizkor service. Since before my conversion I attended these as part of the whole High Holiday line-up. Monday was however my first blury Yizkor. Just the evening before I asked a patient friend, what exactly was invovled during the service? I knew what went on, but I suppose I needed to know that it was OK for me, as a "step" mom to mourn. Since Step-son's heart "attack" (ie, before he even died) I was not given permission (by my inlaws & outlaws) to have feelings of remorse, nevermind express them. (That story is still not far enough away -in time- for me to write about but trust me, it will get written). Not for me, mainly for him & my Wife, his mother. His more-than-birth-mother. The woman from who's (between) legs he came and who's arms he died - that woman.

Anyway, my patient friend briefly outlined all that was to be involved so that I could make the choice for myself. It seems that whatever we did the year before escaped my mind and heart. So I'm glad I asked. For those who are not Jewish, it's the memorial part of the ending of the Yom Kippor (day of atonement) services. And of course, if it doesn't affect you, it's usually another set of prayers and readings you go through the motions for.

This year I holding my mahzor in one hand, and never without a tissue in the other. Loads of congregants lost loved ones this past year (or maybe it's that I finally started paying attention). I felt like the only one who couldn't keep it together though. Later, after receiving a warm hug from our student rabbi I realized that Step-son's death happened a mere 10 weeks ago. It hasn't even been 3 months. The deceptively cold weather and the ripening reds and yellows of the leaves trick me into thinking it was a whole other season ago that this happened. And it was. But our Canadian seasons are so short that it still hasn't been 3 months. It's been a long ten weeks. The space in which time travels and takes has definitely shifted. In our house time is now marked by "before" (his death) and "now". Some days I'm compelled to look at his picture and aks him why? Other days I realize I can no longer watch my favourite CSI series anymore. Too many people die in them and death is no longer entertaining.

It's starting to get cold out there. I felt the north wind on my ears today as I walked to the bus stop - but inside I'm starting to melt. The time and distance away from all the crazy people in that hospital room is helping me get my own time and distance to make sense of things. To no avail. We still haven't heard results of the autopsy. I'm not sure if we will ever be given the 'right' answers to our one question: why.

I'm reading about writing right now. Part of my graduate work (ok, most of it) has been about creativity and recovery - revovery in the traditional sense (from chemical dependency) to the non-traditional: re/covery, dis/covery and re/storying the self. My finale project is to write a curriculum and programming to deliver (to different agencies; my advisor is practical. She's been the only one to let me make this into a work/workable project). I love what I'm reading and yet I hate it. As I read how writing and creating (arts) help all sorts of people to un-cover, dis-cover and re-cover themselves, others, and the worlds around them, I too am using this same tool. A little aprospos I suppose. A little too clsoe to home sometimes. But then, it's who I am: the personal is political (or as Christina Baldwin writes: the personal is universal) and the universal/politcal, personal.

I still can't write the story of the 4 weeks in Van. I'm still melting. Perhaps once it's all out on the floor the obsessive compulsive in me can go and pick up the pieces and file them where they belong. Perhaps some pieces will make it back to my heart, sharp edges filed down so as not to continuously cut so deeply.

Day 2 of DD (designer drugs)

2009-09-24T22:19:00.004-04:00

Well it's day two of me injesting these little pills that will somehow, miraculously open up my pulmonary arteries in a few months from now. I don't want to tempt Mr. Murphy, but while knocking wood and repeating "keineihore" over and over again I think I've concluded that at the very least, I'm not allergic to them. No anaphylaxis or other crazy initial reactions.

As for the side effects, it will take time as these drugs work to unweave the way the oxygen's been circulating throughout my pulmonary arteries and other breathing patterns established over the last three decades. I do feel 'wheezy' for a few short hours after I take them but really, I'm quite used to that.

The way I run my daily life is sometimes more like a side effect than the actual side effects. This morning right before I got out of bed, I heard my Wife return home (from work). She started up the stairs and our short-bus cat decided to race her. I could hear little Misha skid around the corner of the stairs, bolt through the door (not the cat door but the door was opened by that point) and leap right into the bed at such high speeds. Cats are know for their lazy slowness, but this girl was so fast that when she jumped up she landed righ on my chest in one big pounce that felt like a punch to my diaghram. It freakin hurt. The Wife couldn't believe the speed and pressure at which this little kitty used. My cats, little darlings, can be worse than side-effects! So really, living with these abusive little creatures is preparing me for some breathless days ahead!