Wednesday, January 27, 2010

mopping & spiritneuroimmunology

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!

Monday, January 11, 2010

here we go again

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.

Sunday, January 3, 2010

New Year

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!