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!
Wednesday, January 27, 2010
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.
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!
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!
Saturday, December 26, 2009
How can one be happy with a broken heart?:
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.
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.
Friday, December 18, 2009
making up for lost time?
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".
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".
Wednesday, December 9, 2009
the in-betweens
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!
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!
Wednesday, December 2, 2009
9 1/2 weeks
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.
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.
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