what else me

Saw the Prince of Persia (husbands name for the cardio) put me on statins. gave me a choice $500 test to see if clogged arteries or statins. I said ok low dose I've tried to get cholesterol down but doesn't seem to go down. So 2  days so far seem ok. oh ow the drugs are piling up. Well two. One of the girls at work has high blood pressure and is very bad about taking her meds, now I understand it feels like they are sucking you into being old. In ten minutes you'll end up on 20 meds and a walking frame and spend your life being ferried around surgeries and X-ray and blood collecting centers. Where no one will have time to check the test properly or do anything about it.  

All seems kind of nuts the purpose of life is to prolong life? I dunno I've seen the nursing homes and you have to wonder if its worth that. I wish I felt better in my head, somedays I am not too bad I dont want to upset people by telling them how bad I feel but then they aren't interested anyway. 

Went to an interesting public lecture at the uni  by Prof Julian Gold about the possible role of retro viruses in diseases like MS, there is a new research group at the uni sounds interesting. He is head of the Albion St clinic in Sydney, those guys are such heroes needle exchange, prostitute collective, approachable non-judgmental treatment. I always think about the babies we dont see with HIV, and the woman we look after with drug dependance but not HIV. Could have been such a different picture.  

Asked the Prince a few questions about 3rd degree block he answers were rubbish really and he said they wont take it out. I said there is so little research on it. You would like to have hope that it doesnt happen to others, that they would find a way to prevent or treat it better than this piece of shit. Pacemakers for all they are mesmerized by the engineering wonder are crude and non-human compared to even the simplest organic system. 

CIAP

Two nice shifts, so nice to work with people who work equally. I was a bit naughty thro refused to take a student, was tired as played golf in the morning and it was hot plus cranky as they keep putting me on the Caesar day, busiest day. I regretted it later as the students were really nice girls and interested so I wont be mean again. Feel like a petulant child at the moment, I keep hoping they will sack me or discipline me so I can say I want to move somewhere else but they are all cutting me lots of slack, poor crippled me. Funny illness this are you better I get asked that 20 times a shift at least, well I wasnt sick really I think but I guess I was, just didnt feel it much which makes the drastic treatment much harder to accept. Tomorrow I see the cardiologist again dont know why I bet he'll want me to take statins, stuff that then the pacemaker clinic on friday to turn up the upper rate then the GP next week then  I hope thats all for a while. 

The best thing is we can have home access to the clinical information access program all the medical journal and text books you could want on line and mims and everything its like a hundred christmas at once. My husband says I am really a nerd. I want to go back to uni maybe just one subject next year I'll have to have a look. Everyone does this traveling thing when they get old but I dont care about that. Back to ciap.

So annoying

How you get over things when you want to stay upset. I guess I'll have some more upset times but its not as bad as grief. Its kind of weirdly like nothing, just a bit sore around the shoulder. I've read lots about idiopathic heart block now but really its a bit of a mystery of a disease. I kept hoping it would just go back to normal but not likely. Best thing has been the pacemaker club you can post questions and get some good answers, if not always what I want to hear. The people are really nice and they give you hope that you will come to terms with it. I hate it but really there isnt any choice no other treatment. 

Did some gardening wiifit took the dog for a walk and made a nice dinner. Sometimes I remember how difficult doing things was before. I'd go upstairs and want to lie down on the bed. Its good to just do stuff without the awful tiredness. I feel like I could make myself sick or get better.

Between

Not happy not sad, there should be mood monitors, our moods affect us too much I guess. Should try and just stay in the middle like the Buddhas middle path but my little boat keeps tipping over with the littlest things. I want someone to make it better but no one can fix your world but you really and full time happiness doesnt seem to be human condition. I want to go for a surf.

Is it me or the machine

Another bad day and a half. Night duty kicked it off dont cope with things when I get tired. Didnt get enough sleep over the two nights then I get really upset and stress about everything. Poor husband gets all the freak out I'd rather be dead etc I dont want to live dependent on this thing I feel like a cyberman (he is a big Dr Who fan) I didn't really say that I just thought of it. We watched the new Dr Who tonight.

I have to find a way to deal with this. What is hard to work out is why its so disturbing. I guess all my life I've never felt worth anything now I feel just defective and not really worth all the trouble and cost of this treatment. I think people must think I'm just a freak. I dont want to mix with people, maybe I need just a break from people. I kind of feel alright alone. Maybe I should take long service leave. To be honest too I am used to getting my own way, if I want something enough I usually get it but no matter how much I want my heart to get better it doesnt. 

  

Autumn is so nice

Its late afternoon the camellias are in flower lots of birds have been to drink. Its hot in the day and cool at night, perfect. I wanted to go for a body board but sea too flat to be bothered. We did aquarobics today , an extra one and daughter and I went to beach for coffee. Have promised the dog a walk then going to have a long soak and read more of the girl who kicked the hornets nest. Tonight the Killing is on very good Danish drama, by the makers of the Eagle and Unit One, also great. Usual messed up scheduling, we'll end up buying the DVD.

Did the ultrasound test yesterday, did they tell you its internal.....no, no lumps she said and the ca blood. I said this surveillance thing makes you feel you've failed if they don't find things. Supposed to do mammogram too I figured I have done my bit for medicine for a while. 

Today I felt almost happy (I dont want to go too far) I dont think I've felt like that for years, there was always this dull dreadful feeling behind everything, grief? the heart? depression? I dont know. But its gone. I got over them not turning the right setting, rate responsive on. It doesnt suit some people from what I've read but I feel better with it through it made me twitchy almost after all the flat heartedness. Settings make a big difference I suppose. I am reading the physiology of the electrical system of the heart. You open one book and another ten questions start. This is my quest for why, but more likely coming to terms with not knowing for sure. 

Its getting darker, daylight saving ended at easter so now its dark early go walk the dog.

Whinging whinging

I keep whinging but its getting a bit hollow I saw GP yesterday he wants a whole lot of tests done for stuff he said because you wont come back, which is true. I dont like doing all that stuff. I dont mind dying of cancer but being hacked up and poisoned first. Once you find out no one says no to it all well not till it gets too bad or ineffective. There was a good story in the paper yesterday by an author of a book called smile or die. Meaning have a positive attitude or you'll die. One idiot friend told me we didnt have seats with TV's in the plane we were on because I had doubted they would be there. Yeah I believe in a mind body connection (and even a body mind airplane connection) for sure and maybe my grief over my mother contributed to vulnerability to heart block but these things are not simple. Do we pick our personalities, to me the babies come with personalities attached, parents affect some stuff but we are ourselves from the start I think, through we are all supposed to be some grinning cheerful role model type.

Anyway he said is there anything other problems and I thought about a referral to a psycologist but just couldnt say it. Probably better to go for Buddhist lessons at the temple. I went nuts once when I was a kid I cried for 2 days straight mental breakdown I suppose. Lots of reasons but I thought if I go get help I'll just be sucked into all that mental stuff and my parents just drove me back to work. They never talked about the crying. In the end you have to heal yourself, unless you are entirely crazy. 

Supposed to be looking up if can have ultrasound with pacemaker and gardening.

Friday caesars

Three new caesars are just my limit for work. We've got new IV pumps everywhere didnt have a lecture on them of course and they never stop beeping. They are "intuitive." whatever that means. Amazing amount of money spent replacing perfectly good  previous pumps, very odd. Of all the things we need in the place. 

Have a cold now, feel like rubbish. 

Yesterday went to the pacemaker clinic I said I have problems walking up hills my pulse is still 80 at the top and I cant get my breath, is the rate response on? She said no it should have been turned on, so she put it on, the readings were ok, she gave me the print out. I only understand about 1/2 of it, so I will learn a bit more. I felt quite euphoric yesterday with  the rate response on, more connected to things, less dead and more like normal. Today I'm really tired  I dont think my heart is used to all the ups and downs. I feel so emotional again, 7 weeks of feeling not right and getting more and more unfit because some idiot doesnt do the right settings. I'm glad I rang for an early appointment it would have been another month.

I hate people at work now always trying to ask about it and I dont want to talk about it anymore especially to just people at work. I was too busy anyway. 

Some of it is paranoia but that nurse last week addressing me as pacemaker sister just made me feel such a freak. I wish no one knew, I am not going to tell anybody anymore they treat you weirdly.  I guess too we interact with the nursery and the birthing unit and the clinic so there is a big stream of people all the time. I did what my husband said just answer briefly.  

Well now is after my work days and we did aqua and my resolution to be a recluse and not tell anybody anything took a bashing as I we ran into 2 old friends at the coffee shop and I blurted all. One works in the colonoscopy clinic and she said they see heaps of people with PMs and the other said her mother had one about my age. I dont know why people think you will feel better because a bit of the herd have it. 

What really gets me about it so far in my research they know as much about iatrogenic heart block as they did when they invented bloody pacemakers, problem solved all the work goes into the solution that earns the most money. 

My family say we are really happy you had it but I am not. I dont feel like myself anymore and I am dependent on a medical and industrial establishment that I dont trust and which doesnt give a shit about me and is happy to lie about their mistakes. 

Friend with paced mother said you just have to forget its there which is right and I know she has been through a lot of sadness in her life and is still a gracious kind person. I KNOW I should be grateful but I feel forced into this by family and convention. duh rage rage, makes no difference they wont take it out. 

A thought

I just thought how brilliant it would it be if they added another function to the PM like radio with a bluetooth connection. that would be much better and I'm sure it would be a lot easier to tolerate mentally. Unfortunately daughter shot that down in flames over battery life, do you want the battery changed more frequently, nup. Should make a longer life battery but thats the sword in the stone of technology so a bit difficult. 

Had a big talk to me about learning to think of PM as me and not thinking of ripping it out all the time. Had another session in cas turned out to be minor and not PM related, I hope. Everything is a panic at the moment. 

Grey and rainy today, cooler cosy winter, soup and scones. I'd like to hibernate months of lovely dozing what do bears dream I wonder.  Of grass and fat flies. 

Rebirth even one as mild as mine is bloody painful and difficult and strange.

She bites

My first night duty since the thing, definitely tolerating it better physically. Used to think waking up after night duty was the nearest thing to death, now its a bit better. But I wonder if those shifts are part of what did my heart in, probably. At 3am I thought those bastards only put this in so I still had to come and work this bloody awful shift. 

Then one of the birthing unit nurses comes round with a lady and says to me oh the pacemaker sister, did you take one day off and come back and some other stupid question in front of the patient. I got really angry, when she'd put the patient into bed and came back down I told her I didnt appreciate her discussing my medical condition in front of a patient. She said she was just trying to be nice and I said I dont know your medical history (apart from obviously stupidity) but I'm sure if I did you wouldn't appreciate me talking about it like that. 

Do people really think its a joke I'm a joke. I dont mind people knowing in this town privacy isnt an option but I dont want to discuss it with someone I barely know. We never saw her for the rest of the night. To your friends you still feel like you but to some people I seem to be a disease. Yeah I know we do that to patients all the time. I think my co-workers got a shock, I know people think well its all good but its not it truly sucks if you think about it much. I described the wires growing into your heart to them that creeped them out. Here we'll just poke this thing into your heart and we'll leave it there the rest of your life but dont worry dont think about the stuff ups and crumby doctors you've known or the medical recalls or why the hell it happened. 

They've closed access to google on the computer at work can you believe it just like China but I found the research engine they left us access to so thats ok I'll go on with my obsessive reading about heart block. Better do wii fit walk dog go back to bed. Ah the only blessing of nights it entirely wipes your brain too tired to care.