A lot happening in my body

Taking the HIV pills is having a much more far reaching effect than I'd imagined. Yes, they are very specific and strong (for want of better words) and they are waging war against the HIV virus that has taken up residence in every part of my body.

Including my brain and nerves. The very strange effects that I have been going through can vary from person to person, but they are because the HIV virus is being attacked in those areas. It's quite amazing to me that science and research has reached the point where warfare can be waged at such a level. As the doctor said, there is indeed "a lot happening".

The effects will pass I'm told as the HIV levels decrease. Currently I'm going through the "induction" period of the drugs. To me it seems pretty much like it's reversing to an extent what happened during sero-conversion to HIV. 

I never thought the drugs would have such a huge effect. Either that or I never realised just how much of the way I was feeling and ill health was caused directly by the HIV virus. In fact I'm told now that as HIV goes into the brain it can have the effect of causing depression, and that as the HIV levels decrease I may even be able to come down a bit on the happy pills. All this is way beyond the scope of what I thought. 

I get a blood test next week to test the levels of things and more will be known then. 

This is all extremely interesting, if simply from a scientific standpoint. I signed a thing at the doctors that my experiences in starting treatment can go into a pool of knowledge anonymously. 

2 Weeks on HIV meds

A busy few days. Haven't even looked online since Sunday.

Saw doc mon about the HIV pills, and it's full steam ahead there. No rash, and the side effects slowing. Today was day one of the double tablets, stayed home from work just to be safe than sorry. Glad as felt quite spaced out again.

Doc explained that as the HIV virus reduces in my body my immune system will start to recognise again normal sorts of sores and cuts and heal them more quickly. That would be great as I've had a lot of problems particularly with a sore mouth, just from gums rubbing against teeth and the like, causing mouth ulcers and redness. At times been very painful and hard to eat.

Went to the monthly support group after that as it was nearby. Have been to a few of them but likely will make that my last at least for a while. It's more for newly diagnosed people really and much of it was simply covering old ground. Interesting discussion about disclosure though. Afterwards I was organised to email the PLC to get info about exactly what to expect with the HIV pills. Haven't quite got round to that yet but will get there.

Gave it a bit of a nudge at the pub last night, a bit too much beer (just for something different). Got home safely though :) Quiet night tonight at home in front of telly. Cold and pouring rain outside. 

I think some are getting sick of it

Probably should shut the fuck up this week in talking to people about everything. Just getting the feeling they're all getting tired of hearing about how sick I feel, new pills, doctors visits, etc etc. 

Yesterday a good mate at the pub come out with "I thought these pills were supposed to make you better". And even S last night when he rang, was at the pub out there and seemed surprised when I was just having a really quiet weekend and doing nothing Sat night, as I was still getting used to the pills.

Think I may have to engage the mask a bit. 

Major loss of appetite

Although it seems Jelly Babies are spectacularly delicious!

The lack of interest in  eating and even not even able to eat a big meal is rather a concern I think. Have always been one of those people who can eat anything and not gain a single kilo, so eating less isn't good. At the moment only having about half of what I usually have.

One good thing though, if nothing else these pills will cure me of drinking too much beer! Cripes, I just don't even feel like it most of the time now. Having only about 3 or so beers at the pub and just can't be bothered with more.

 

Looking into the face of the monster

The pain monster...

It was triggered today at work by the simplest thing, a memory. Hard at times to go beyond the past. At times the memories come back, of good times had and now lost forever. Instead of being fond memories. They now haunt, inflicting pain instead of happiness. 

Will there ever be a day I wondered, if memories that are supposed to be happy will actually be so? Or will all of them be marred by the pain of the events around them? Most of my life is full of such painful things, and sadly the happy memories become painful, even more painful, for the happiness lost. What could have been, but now will never be. The pain of loss, the disappointment of loss, and the ripples that flow out from all of it. The hurt coped with being trodden on by those selfish and insensitive ones who have no idea of your vulnerability.

And there I was today, in the lunchroom at work, thinking such thoughts. Getting drawn slowly towards the monster... Skirting the edges, feeling the impossible pain if I enter. It's very strong, and I blink back tears. Go back to work, but the monster is still there, lurking and waiting, throwing out more memories to try and drag me in. 

I resist. I chose to stop remembering. I chose to come back to the present. I can't fight the monster as I will lose. I can only walk away to another place away from it. I do so, I stop remembering, and I return to the present. The pain subsides, the hurt goes, and I'm now in my present life again.

I don't know if I'll ever be able to remember many things without facing the monster. Therefore such memories are taboo for a time. I don't know how long, but the present seems much brighter than reliving those.

One week on the HIV pills today. It's been rough but body wise am feeling OK right now. Still off my dial for a bit in the mornings, but nothing like before. One week before the dose doubles on one pill, and I see the doc 2 days before that to see how I am. Stay tuned.

The pain monster 

Saga goes on

I feel hugely better today.To make up for yesterday I will announce now that I am pissed.

For anyone overseas, that doesn't mean I'm angry. It means I'm happy *hick*

Looks like yesterday's projectile vomit's into the porcelain throne were little to do with the meds, but everything to do with likely something not to my stomachs liking. Really am glad its just that, was very worried it was the pills.

So today I had the laugh and an extra or two before going home. 

:)

Sick

Ugh, just had the most major spew. Flushed the toilet 3 times during it as it just kept coming. Feel like shit.

Just going to have a bath, some vege stew, and bed. Hope the fuck I'm OK for work tomorrow. Hope this doesn't go on for too long.

Can hardly even drink beer. Only reason am trying is because I'd guess there'd be a bit of alcohol withdrawal involved in how shitty I'm feeling. Down to only 3 today. Most of them ended up in the toilet I think.

Heavily medicated

Glad it's Sunday. Felt normal this morning, all afternoon felt quite stoned.

The most precious moments from the depths...

Last year was the worst year of my life. From the many worst years before that. It was the year that I broke; or the year that broke me. By the middle of it I was actively contemplating suicide. As a result of the help available, I was headed off before I got there. I had reached the point of measuring plastic bags over my head.

There were many people involved who saved my life during that time, but only a few core ones. One of them was Sammy. I took part in the Genesis workshop late last year in which he was one of those leading. The most precious moment was at the end when we picked up random pics from heaps on the floor. I chose one of a guy looking reflective and listening to music, saying that I identified with that as I had survived the year and was starting to listen to music again. The 2nd pic I chose was simply that perhaps I might learn to fly again.

That's what the pic looked like. It was the most meaningful part for me of that whole weekend. Sammy and others were a part of that moment.

At the last Planet Positive social night I thanked him for being one of those core people who had saved my life. Through tears I said for him to just know that "you've done a very good thing". He gave me a hug. That thank you from me meant a lot to me.

Last week I picked up a new mag by chance when I was seeing my brainologist. In it I found Sammy's thoughts on being here (he's gone back to his homeland America) titled  "See ya later". He spoke of that thanks in the last paragraph. To read that was so special for me; another moment. Humbling I guess that my fucked up life and his part in my help was realised by him so much. 

Suppose it takes a lot of shit to grow flowers? Well I've got a lot of shit, but the above are some of the best flowers I've ever seen darlings. I'm taking the time to smell them. They are so very very special.

See ya later Sammy :)

Much better today :)

Still feeling sort of strange, but nothing like before. I guess one of those drugs that has side effects when you first start. I had quite a bit last year when first starting the
Efexor, blurred vision, everything was really bright. I actually feel quite normal today. Very good. Quite pleased.

Notice it still made me very sleepy at the usual time in the morning after taking them. Fell back to sleep in bed for an hour. Perhaps that will pass too. Other than that, nothing to report about it; how boring!

In other stuff got a letter from the NSW police minister himself this week regarding the impending court case. Told me nothing new, but was interesting I thought that he'd given it that much of his attention.

I emailed him of the 6th Oct Hearing date if he was interested in following the case. Am also applying for my hospital records under the freedom of information act for that night in Feb. I haven't heard anything of what my blood alcohol reading was (they reckoned I was "drunk in a public place"; fuckin BS, strange how I was never charged with that). Also would be good to have their records confirm my account of what was given to me to take, and why I was released. 

Fuck knows how much this is all going to cost. I appear to be going into further debt again.

Went to the blood pressure tablet trials people during the week. Cripes, it was through the roof. I don't think I've ever had a reading that high! The averages were about the same as last time (they took 5 or 6 readings) but the first one they took was 165 over 116. EEECK! That's fuckin stroke material! Needless to say they've doubled the dose and I go back again in a month. This appears also to be one of those drugs where you can't just start on a high dose straight away, and before that I was on 2 different tablets for it, so it's probably to be expected a result like that at the moment. 

The drug is Co-Diovan. Relatively new here and not a lot of doctors know what levels to prescribe and for who, which is the reason for the trial. About 300 people on it at the moment they tell me. The results will be put online for doctors to educate themselves re the drug.

Day 3 on the HIV pills.

Everything else is taking a back seat now. Right now, my whole life is consumed with this. 

Today there was nothing majorly more, but perhaps at an increased level? Dunno, it's a bit hard to perceive "a bit more off my face" when I'm in fact already off my face from it :) I feel constantly a bit stoned. 

Today though tiredness was added to the mix. Generally when a Pharmacist says to me "This might make you a bit tired", then I assume (from past experience) that they will be like sleeping pills. This is no different. Today was the ultimate effort to get out of bed for work at about 6am, and then take more of them. I spent much of the day at work in a complete state of half asleep-ness.

I as usual went to the pub after work for my usual beers and chat. I drank much less than I normally would, but chatting was a laugh as usual :) In the end I went home early as nearly falling asleep in my beer FFS! Tragic!

The ringing in my ears has increased, but the perception thing with sound has decreased. I do however feel rather unusual, in that being out of it. I suppose it's good to get something out of this fuckin disease!

It's Fri night, I am cooking stew and going to bed. Have set the alarm for 6am when I take all the pills through the week. Other than that I simply feel like sleeping all bloody weekend.....

.......to be continued.............

Side effects start

They happen with all drugs to some level. They don't last once your body is used to the drug.

Today I had weird perceptions. The sound was strange, sort of distant/detached. Like an echo. Like coke, but nowhere near as intense. This on top of me feeling sort of stoned from the happy pill dose as well, when between about 9am-11am at work. Affected my perceptions of what was happening around me too; again, sort of detached. It does appear I'm taking some very heavy drugs.

Also tired,

Goodnight all.

My first HIV prescription

Day one of the meds.

These are my pills. One months supply. They cost me $66 for the two prescription items. I can use that receipt for tax and safety net eligibility (over $1,200 a year spent on scripts sees the price drop to about $5 a script). Astonishing to think what this can cost overseas, and that the cost to the gov here is $900 for those two little bottles. 

I said to the doc as well, thank fuck I live here. These pills would be completely inaccessible to me at such an outrageous cost and I simply wouldn't take them. Instead I now have the luxury of taking them early on to take control of the HIV, rather than (as the doc described) waiting for everything to collapse and getting treated in a crisis. He says the viral load will become undetectable with them. We shall see.

The regime is quite simple; take one of each pill in the morning when I take my other usual stuff. Then after two weeks the Viramune goes up to two tablets a day (one at a time about 12 hours apart). That's it.

There were warnings in the info about operating machinery on them until you know what effect they might have on you, so I took the day off work just in case, explaining to the boss why. He was quite happy about it. Unfortunately though I haven't as yet undergone any wonderful and bizarre side effects, so I guess I'm OK for work again tomorrow. Ugh, feel a bit ripped off there! I was hoping for at least the odd hallucination, maybe even a pleasantly dizzy feeling. But no, nothing. Sheesh!

I have to go see the doc again in two weeks, as 1 in 1,000 people get a bad itchy rash with them. If that doesn't happen then it's full steam ahead. If it does happen will have to change to something else. Told me to take anti-histamines if getting itchy, which I do anyway. Still think it's freaky that my skin is allergic to cold air FFS!

I'm starting HIV medication

Stay tuned. For anyone reading this who has never come across this before, stay tuned darlings. You are going to get a front row seat with an HIV+ person, and their experience with starting the meds.

BTW there is in fact no crisis at all. My CD4 count was the best yet since diagnosis: 610. My Viral load had reduced from 40,000 to 25,000. It turns out I'm eligible for meds with a viral load over 10,000.

The doc was saying that (again) it's not about waiting around for things to collapse, but instead managing HIV in the best way possible. It made a lot of sense. It will be one less thing to worry about. Evidently the drugs now make the viral load undetectable in the blood with current means. 

So why not? A lot of work and effort has gone into this by many many people. We now have these incredibly amazing drugs that stop the HIV virus in it's tracks. Not a cure no, but very very good. Why should I be worrying about every fuckin cold I get? Every infection? Every time some bad health thing happens and what the HIV is doing to me? Doc said I've enough to worry about without that!

The cost is minimal, through the PBS. To buy what he's putting me on outright would cost about $900 a month he reckons. Through the PBS it's accessible to me at about $50 a month, the gov pays the rest. If I was on a disability or other kind of pension it'd be about $10 a month. Have been working all my life since 17, paying taxes. This is where I get a bloody payback :)

I feel wonderful about this decision. Absolutely wonderful.

What a piece of piss!

Far out. That's the easiest days work I've done. Got there Sunday 7am, all ready for a few hours work. Finished the whole lot in half an hour! Good grief! Get paid a minimum of 4 hours at double time for going in Sunday, or 8 hours normal pay FFS! Got a cab but will tell the boss not to worry about the $15 for that, cripes, can't believe it. He said already I'd be paid 4 hours. Part of having a strong union.

Went home and went back to bed. A bit of washing and up the pub later :)

 

Working on the weekend

The management only asked me as a last resort. They other bloke is still on holidays, and they even asked the temp agency bloke before me. I've been so unreliable they didn't want to ask me :) But anyway, there's a big job being done Sat, I have to go in Sunday morning for a few hours and cut it in half to letter size. There's 2 shifts coming in Sunday to run it through the mailing machines, so if I don't turn up my name will be mud! Think I'll pre-book a cab just to make sure. The buses are really fucked where I work on Sundays. 

Am so far in debt the money won't make a difference, just more about wanting to do the right thing by management. They have been very understanding of late especially. It's good pay as well, all double time at about $50 an hour, and even if I get done in only 3 hours or so they still have to pay me a minimum of 4 hours for turning up.

Taking it very easy today. Very quiet, a bit of shopping and a few quiet beers at the pub later on. Slept 12 hours last night, very solidly too. Will try an early night tonight as well.

Two appts coming this week. Mon I get the blood results for the latest HIV level of doomed-ness, and Tues another visit to see how the new blood pressure pill is working on me at the trials place.

The mood of the last few days has lifted a bit. Not much, just a bit. Better than nothing.

Update:

The alarm is set for the usual time of 6am. The taxi is booked for 6:45am. It is now about 7pm the night before and I have dinner nearly ready and the bath running. I have just taken some Panadol in case I get a bad pain in the night that wakes me up. Going to bed shortly after all that. The situation is looking good at the moment...

Feel like...

Thursday, have gotten to work all week.Went home from the pub early tonight just too tired. Not much beer just wanted a decent meal, bath, and bed. Only one more day then the weekend.....

Felt terrible this morning. Very down, felt like giving up. Gladly my mood improved through the day. Currently it's like I can keep going because of the pills. They honestly got me through today. And honestly, I'd be dead today if not being put on them early last year. They aren't some magic drug, all they do is put back the chemicals lost in my head over years of ..... I don't even know a word to describe it .....

But yes, this morning just felt like giving up. 

At the moment I don't feel quite like that. Just putting one foot in front of the other. Getting through. Perhaps life will feel different if I keep going. .....

The court date for the police bashing hearing is unfortunately much earlier than I'd hoped; Oct 6th. I now have to see the solicitor and start preparing for the Hearing. There will be much involved, including getting things from doctors and the like.

Life goes on. But yes, sometimes I feel like giving up.

Burnout/suicide is still an option

Interesting visit with the psychologist after work yesterday. He suggested the down mood of late can very well be attributed to the weather; in that it makes you feel low after weeks of low tempts, huge rainfall, and gray skies. He may be right, as it has been unusually cold and incredibly bleak here. Last week we had the coldest Sydney morning for 61 years. 4 degrees C in the eastern suburbs, and below freezing in the west.

I also related my feelings re suicide. No emotional catastrophes of late, and not about to pull the plug if I can continue to live apart from the pain. But to be honest the option is still there in my head. Am living day to day and week by week. I survived last year but I will not ever go through that again. I can't go back to hell again. If faced with such pain confronted to me again, my choice will be in the future a quick death. I do hope though that with the pills helping me to live apart from the pain, that over time I will have a new life outside/apart from all that.

I want to get away again. I just want peace. The quiet of nothing; no traffic, no noise, nobody else, apart from me and who I chose to be there. Yes, I miss S, but I also miss the nothing..... the space....... the peace........

Suicide will always be an option for me now, the rest of my life. 

And now I have an out. If things go really bad, it will be my choice in the future to continue or stop medication.

The cat and the lizard

Still feeling a bit strange. Haven't had much of a chance to look into the dream thing though, is probably nothing, dunno why am worrying at all really.

Took a really sweet picture of the cat last night. She's such a lovely thing. Her favourite toy is an old lizard that had miraculously survived her killing it many times over. She goes to sleep with it sometimes when I'm watching telly in front of the heater.

So cute! A very nice scene on a cold winter night :) No wonder I feel cozy and safe at home. 

Strange dreams

A strange day or two.

Yesterday was feeling quite despondent. Nothing to worry about as everyone feels down now and then; I mean no need for myself to panic if I'm that way too. Simply part of being human. It was strange though as there seemed no reason for it. Apart from I guess at times being rather overwhelmed by things.

Some good news at the end of the day. I don't have to attend court on Wed after all, as the solicitor is simply going to make a date for a hearing. Phew, although I'm in the right this time it's still a horrible feeling having to go there. The hearing itself won't be until next year he reckons. Excellent! *insert big smiley face*

Was talking to a couple of blokes at the pub last night, and haven't realised until now just how wacko it sounds. Have been a bit freaked lately about the intensity of the dreams I've been having. I mean they seem incredibly real, full colour, can remember everything. They're so real in fact that at times I remember something and I don't know whether I dreamed it or it really happened, and I have to stop and think about where that memory came from. I may spend some time researching online about it. Certainly it sounds really fruit-cake-ish!

At times when I wake up it takes me a good 15 minutes to get myself into reality again and away from the dream. Perhaps that may have something to do with my mood yesterday.

First sickie in 2 weeks.

Sick today. Woke up early with a terrible headache, nearly a migraine, took pills for it then was so knocked out couldn't get up for work. Boss was understanding, even thanked me for my supreme effort last two weeks of actually getting to work! Thank fuck for that, the last thing I need is condemnation. Now though on the other hand, he seems overly concerned about me, may point out to not be quite so worried about me, I dunno.

Slept until midday, wow. My body must have got to a point where it just couldn't go any further.  Feel much better for the sleep. Just couldn't wake up.

Been very cold here in Sydney. Two days ago only 4 degrees Celsius in the east, minus 2 out western Sydney. Coldest morning here in 60 years or so. Saw a frost on the ground, never seen that in Sydney before. Very cold going to work at 6:30am. Been taking antihistamines to stop the itching I feel from the cold. I still think it's weird, being allergic to cold FFS!

Back to work in the morning. Whew, at least I know they aren't going to stress about today off. It seems my supreme efforts of late haven't gone un-noticed.