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.