Tuesday, November 24, 2009

I'm not really sure why I thought my life was worthy of memoires. That was the point to writing this blog: that one day I would have enough entries and writing to gather up for some sort of memoir about living with this rare congenital (and unfixed) heart condition. Who did I think I am?

Friday, November 20, 2009

worst fears

My worst fears are playing themselves out. I don't fear dieing young - it isn't easy but it's happening.

I don't fear dieing in a hospital - it's not my ideal, but I can't control it.

I don't fear dieing in my sleep - OK, some nights it terrorizes me, but in the end it would be a nice way to go, just not for the person who has to wake up beside me.

I do fear dieing alone, of a broken heart both literally and metaphorically. And that's what's happening.

Some days I don't know which hospital I will end up in first: the RO or the Heart Institute. Between the tachycardia (brought on by stress/loss) and the actual stress I'm one big ball of BROKEN. And I'm alone in that brokenness. Well, I do have a few friends on my "side" of things. Everyone else, gone.

This year has been a record year for loss, from losing my future with my cardio-man telling me this is the last chapter in January, to financial loss (I had to dump 2 jobs due to my health), to losing Thomas, to losing my legal footings (power of attorney etc.), to losing a long-time dear friend through a move, to losing my home and my life mate to losing my "community/tribe". I'm shocked actually that I'm not in the RO right now. Even if I was, there would be no one to make decisions on my behalf.


The only 2 women I trusted enough to not take sides and be my power-of-attorney (for care/hospital stuff) are far from my heart. One now lives 7 hours away and the other is moving away. The security I thought I had about my health and the decisions that would be made/carried out when hooked up to a ventilator (if I even get that far) are no longer secure. That scares the shit out of me that except a piece of paper with my instructions, no one will be there. No one will be there. No one has been there (OK, to be fair, 2 of "my friends" have been. But no one, no one of "ours" have been). Yet another loss.


No one will know if I die alone. I don't have that many friends and that facade called community is disappearing with the woman walking out the door. Splits definitely divide "friends". It's sad that blood family really is all one has - at best. Friends and community, as I'm learning, as much as there's investment and built up parameters, are just that, a facade.


I looked at an apartment in a "crack house". Alraight, it's not officially one, but it is designated social housing. My name miraculously came up on the social housing registry (I had put my name down about 7 years ago and the timing couldn't be better! I have no income, no wife, no life). So I visited the place/offer, and it's OK, I can even have my cats with me. But all I could envision walking through the place was me dead on the floor and the only reason someone would know would be the stench that my neighbour would smell. Living alone and dieing alone is my worst fear and it looks like it may come to fruition. Yeah me. This is what I spent all those years building, investing in, only for her to leave me?


Granted, we never did put ourselves first, we never found the money in our tight budget to put towards counselling to help our issues once and for all. We've always been rocky - that's no secret to anyone - but we've *always* been there for each other. Only I've been shut out of her grieving process - yet I shared mine (about my health). I think there's only so much outside stressors a couple can take before each of the people involved crack. I cracked, I behaved badly, she cracked and pushed me away. The she said she said is not important. What I'm writing about is insurmountable loss that humans can't get through healthily without community, friends. I no longer have that. I suppose I never had that - perhaps people were always her friend and I was the tag-along wife. That's the feeling I'm left with. Not sure and don't care; just left with heart break. I just know how alone I've been purging my life, packing it up. It's a good thing I started (slowly) purging when I got sicker - but it still hasn't made it easy. It seemed easier to purge stuff when I knew I no longer needed it because of the shorter life journey. It was my way of making things lighter for my (wife) when I left this planet. She wouldn't have so much of my physical stuff to deal with. (Aren't I always thinking of others?) This purge is much more difficult. It's a "I can't carry this to my new social housing unit, because literally, I can't *carry* this, so I have to part with it. That's tough. Especially when it's not my choice.


So in the end my worst fears are coming to light. I'm dieing of a broken heart. We all knew that, but now I'm also dieing of a broken heart - 10 years; she has my heart, all of it.

unsure

Not really sure what to write these days.


I feel that my health is stabilizing -that's about the only part of my life that is.

Everything else is in flux - and I mean everything.

It doesn't help that I've (we've) had a year from hell. Just when we thought we could gain some grounding, another crisis/trauma. It's finally taken it's tole. I've regressed and can no longer live with it. Melissa Ethridge's song "Breakdown" is my new theme song.


Somehow I have to find the physical strength to whittle down and move a house-full of stuff. That part's not so hard since I started purging knowing that I only had a few years to live. Now I look at "objects" and think: if it's not going to be used in 6 months, gone. It's freeing but sad nonetheless.


The worst part is I've lost half my community. I'm going to be starting over but not from scratch. I'm left with whatever pieces will make the trip.


I have provincial funding now for my expensive yet life altering (ok, a little exaggerated there!) Designed Drugs. The day I received the letter was bitter sweet - it was the same day I received some personally devastating news. (Just add it to the pile of 2009). All that effort, and I finally have the funding. I still have to pay a deductible, but I'm not so worried as I will soon be on the system, where they will take care of it all since I'm as close to financial (and emotional) bankruptcy as I'll ever be.


This is not how I ever saw my life - then again, I also thought I would live to at least 53 (although I did imagine wearing O2 full-time as I blew out all the candles). I thought I had enough stubbornness in me for the fight. That saying "the universe doesn't give you more than you can handle" is complete and utter hog-wash. I am not handling much these days, in fact, since Thomas' passing I haven't been able to handle the day to day. I suppose that's why a simple pig-flu knocked me out cold (then again, it doesn't help that I have these underlying conditions that complicate everything, and I mean everything, in my life. I can't run from it - it's in me, ticking away ever reminding me just how fragile everything is. You'd think it would evoke a zen-like state of gratitude, but it hasn't. It's manifested itself as anger, then add anger to losing Thomas, then ... will it ever end?

Friday, November 13, 2009

sometimes

Sometimes the universe gives you much more than you can handle. I don't believe in that saying that "g-d" only gives you want you can handle. I thought I did but life just keeps getting tougher and tougher and my health - all aspects of it- keeps getting more fragile. Some days I wonder how I haven't broken yet. I guess I've been lucky enough to have good people around me helping hold me up. Other days I feel completely alone not knowing where to turn to. When my health is low I feel a surge of panic. It has only continued to snowball downwards. It plateaued during the summer when I had to be there for someone else. Now that it's my turn to be here for me I find my energy wanes, I'm spread out so thin I don't know where the real me is some days.

And the irony is I'm more mobile with these designer drugs now. I am not leaning on my cane as much, I have better health days (although the days filled with pain are distinctly worse). All this additional mobility has to manifest into more energy for the next traumatic chapter of my life.

I hate transitions more than staying in the pain itself.

Friday, November 6, 2009

my life with the virus - the pig-flu

There is absolutely no real information on H1N1 out there. Sure there are pamphlets about how "its a different kind of flu season" out there. But all these pamphlets and government written info sheets provides are tidbit on vaccinations and hand washing. There's no substantial information for those who have it.
And no, I don't have an official swab-test diagnosis. That's because there are next to no places in this city doing the swabs or tests (unless you go directly to the hospital from your family clinic that way the test justifies admissions. I was at my family doctor's office on Monday (although didn't get to see her, even though she was there) where I first got Tamiflu. I'm on my last day of Tamiflu and now have a wicked ear infection. A friend took me back to the clinic today (the wife is passed out, sick too, and my mom wasn't home) where I got antibiotics and even requested a swab - so that I have more information in which to make my decision about the vaccine once I get better. The nurse's attitude was "what decision; you get it". Hm, I thought we lived in a democracy where I had the choice! Seems like even if I wanted the information to make that informed decision, I won't get it. The way I see it, I don't need the vaccine if what I have is officially H1N1. She said it is, of course, she can't say it because she doesn't have the culture. And I won't get the culture because the system is broke, busy and backlogged.

OK I get that.
It's so backlogged and tired that I got 2 Rx's for antibiotics today. I was to fill only one but she gave me 2 because one drug is significantly lower in cost than the other. So the doctor that gave them to me is not a regular to the clinic, nor did she have access to my file (she saw me in the supplies room, that's how bogged down the system is). That's dangerous.

So dangerous that had this woman looked at my chart she would have known right away not to give me one of the scripts that is contra indicative to my designer drug. Lethally contra indicative.

Either way, I'm getting really tried of any good information out there. I'm tired of all the paranoia that clogs up phone lines for 6 to 7 hours just to ask a nurse a question - when one already has it, not some paranoid fear-based questions. Which, OK, are valid but there are people trying to live through this vicious thing! So my pharmacist from the Designer Drug program called (mainly because of money issues) and when I told him what as up he got all serious and gave me some real information. Finally. I now know what too look for (and pray doesn't happen) and how long I'll still be in danger for, for real. Apparently even though the fever is gone, doesn't mean I'm out of the woods. In fact, even when my last cough is gone (or ear infection etc.) I will still be in danger - up till almost 2 weeks after I think I'm out of the woods.

I have to admit, as much as I think I'm a tough little cookie, that kinda scares me a little. I've only heard people like me (with underlying conditions) die from this virus. I sit here with all my Western & Alternative meds pumping through my body on full force for nearly a week now and know from this past week just how vicious this virus is. I've never ever felt so at mercy of an outside illness.

Monday, November 2, 2009

hopefully just another health scare

I'm not feeling eloquent at all, but thought I'd post because if this stupid H1N1 takes me then damnit I'm going out with a bang.

I haven't had the flu in a long time, like over 6 years long. I do all sorts of naturopahtic things (not including the flu vaccine) to help keep me virus-free in the winter.

Well, if I didn't speak too soon. A few weeks ago I was feeling cocky so decided to give away part of my secret on FB. Yeah, tempting fate. (Or whatever the hell is out there).

This is the first time since Sat. that I've been able to lift my arm - I look and feel like a train wreck. I was listening to the news last night (or maybe it was the night before... dunno, it's in the background to keep me company) and the city is now telling people that they will be turned away for the piggy-flu vaccine if they are not high risk, but get this, aren't going to require proof. They showed one mom who said "if my kids can get it I should too" then they showed another mom who has som eunderlieing condition and a son with H1N1 say "I hope you remember people like us when we take sick and die". I feel for her. Even IF I wanted the vaccine, too many people who think thye're high risk ("oh I work wit hte public") take up the space and contribute to long line-ups. Someone from my extended community here in Ottawa was saying "oh I"m going Friday to xyz clinic". From what I know she is completely and totally healthy. It pissies me off because she is also the same person that posted allt he "pro-vaccine" info calling us that question it "conspiricay theorist".

Whatever get a life.

And so now I"m sick, my fever has only gone up and has stayed at the "I must go to ER" but well, most people who go to hospitals (with chronic shit like me) come out worse, if alive.

Yes I'm on tamiflu- my wife dragged me (I couldn't lift myself alone until an hour ago) to my dr. this morning to get it. I'm damned if I do, damed if I don't.

My cardio-nurse wants to make sure the virus hasn't gotten into the heart lining cayse that (endocarditis) will cause death.

Oh. And Thoma's cause of death "myocarditis" - infaction of the heart muscle (another layer).

I"m gonna crawl back into my deth bed now.