Monday, February 28, 2011

Respiratory therapist visit

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

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

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

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

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

Wednesday, February 23, 2011

no longer normal

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

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

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

Sunday, February 20, 2011

O2 compressors and mobility

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

Saturday, February 12, 2011

don't get it

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

Wednesday, February 9, 2011

1 month to go

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

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