Thursday, December 30, 2010

disclosure - work

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?

Sunday, December 26, 2010

saying what I mean

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

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!

Friday, December 17, 2010

Cardio appointment: not stable

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.

Sunday, December 12, 2010

Cardio apt.

I had my twice yearly cardio appointment. I hate those days. I didn't even have time between the appointment and work to take some time for me to digest the information. I had to run to work... Work is the major source of my stress these days. The other source is being without community. I found out recently that I haven't been on glue thinking I've been blackballed, it was confirmed that I actually have been.

When I shared it with a supportive person they said "and you called them 'friends'". Yes, I'm learning just because you love people and call them your friends doesn't mean the sentiment is returned. The years of community building are down the toilet as I continue to get shut out - at least it's to my face now.

That's stressful.

What does it have to do with Truncus Arteriosis. Health, being well, being ill, have a lot to do with community and community building, friendships, loved ones etc. It becomes a safety net, a place to play, love, share, grow. Without that one is virtually isolated, filled with loneliness, no way to play out the stress and of course, no support. I'm not looking for pity. I'm expressing the reality of not being well, not having those supports around that others have. It makes it that much more difficult.

Like for example, I had someone move in the other day and a piece of furniture they needed was in the basement. I couldn't lift it. There's no family to call, no "community". It's extremely hard living with tight limits and being without tribe. Extremely hard.

And so I, let's get back to the stress that my dr. Cardio man wants to see lifted in my life. 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 angry. I am angry 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.

In fact, dr. Cardio man has told me that my health is not stable enough for a transatlantic trip. He does not approve of my trip to Israel. It's a good thing I didn't buy my ticket even though I now have a rough idea of my trip. I'm very sad and disappointed. And confused.

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 astouned where I"m at today. I appear healhty, and yes, I can work full time agian, 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.

Friday, December 3, 2010

death and the sacred wheel called life (recalling Thomas)

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.

Wednesday, December 1, 2010

1 year - a good anniversary

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).