Latest HIV Blood Test Results

CD4 count very healthy, viral load OK but increased. Evidently these tests move around quite a bit.

"No concerns" they tell me.

Still ages off needing meds with these results.

I have a sore throat and mouth ulcers. It hurts to brush my teeth and gums bleed. Mouthwash stings like hell. Feel like I have the flu without the snot.

Dear Diary

Dear Diary,

First day back at work, pain in control, relatively light duties, main supervisor wanting full explanation week off (provided by me with paperwork), exhausted. Bath and bed.

Good night Diary.

How Can We Let This Happen?

My sister asked me when I told her about my HIV "So the people in Africa are dying simply because of no medication?". My answer was "Yes".

They are too poor to afford it, or their gov is too busy fighting it's neighbour to afford it. Drug companies charge an arm and a leg for it. The drugs are there, available. But out of reach for these people.

They are human beings, just like us. They are part of their society just like us. They have friends, neighbours, family, just like us. Yet by the chance of birth that decides where they live, they die. Even the drugs they do get are ones we don't want any more in the West; out of date and side effects too intrusive.

Disclosure and Mortality

Perhaps its because I was getting my will finalised this last week, or being seriously assaulted by rogue police officers to the point of feeling suicidal, let alone the fact of being HIV+, that last day or two have been very aware that my life won't be going on forever.

My will has been sitting at the solicitors for a year, just never got around to finishing the thing off with all that went on last year. In it I have an extra bit where I appoint someone to pull the plug if I end up being kept alive only on a machine. I don't want to be any hero, and don't want to suffer like my wife did. I've decided to appoint my daughter who will have to go in the office and sign in front of a solicitor there to accept the appointment.

There was also this I read in the news today online:

When my sister was on life support after an aneurism more than 30 years ago, a system was in place so that her life support could be turned off after a panel of doctors pronounced her ''brain dead''.

Why can't a similar system work for those people who wish to die with dignity either because of extreme pain due to terminal illness or who put in place a wish to die when they no longer recognise their family or communicate or experience life as we know it?

My mother never wanted to be a burden to her family or live a life devoid of meaning. She would be horrified if she knew the distress her children felt because of her condition.
http://www.smh.com.au/opinion/society-and-culture/my-mother-was-clear-she-never-wanted-to-live-this-way-20100324-qwmh.html

And it's got me wondering again when I should tell my daughter that I have HIV? If I'm giving her the responsibility to end my life in certain circumstances, should I not tell her also of my condition that may or may not lead up to that? I'm thinking more and more now that she has a right to know, and to not tell her would in some way limit our relationship as father and daughter.

When I told my sister she was completely calm about it, and it actually strengthened our relationship. She felt special that I had trusted her with such personal information, and would rely on her judgement as to who she might or might not tell.

In a way it's not about feeling ashamed of having it, but rather about sharing with someone that you have a medical condition that unfortunately still has a lot of stigma and misinformation attached to it. It is of course much easier to disclose your status in the gay world as HIV is accepted. One in 5 gays in eastern Sydney are positive. Not so in the straight world, where huge misinformation remains. Some people still honestly think I'm going to cark it in a few short years!

Gladly however my daughter has grown up in a different world than me; amongst her peers sexuality just isn't an issue. She even had a girl friend in high school for a year and thought little of it. For her it will be about the disease, and her growing awareness of her father's mortality.

Yes I think I must tell her soon.

X-ray

Saw doc yesterday for the damage report. I'd only read the bit of paper in the x-ray envelope but not the x-rays themselves. He pointed out the two fractures. The x-ray people were even helpful enough to draw little pointing arrows at them. Click pic to enlarge.

I was quite amazed at the damage. You can clearly see where they have been broken and moved inwards somewhat; a definite bend in, and the break behind them. I think it hurts more just looking at that!

Lady Ga Ga

Yes I know Off topic dearies from my insane world. But then again can't I at least put up something not as utterly depressing as my fuckin blog!? Here you go all, this is Lady Ga Ga, in her newest and latest vid "Telephone". It's the explicit version all. Go ahead Rod and Kevin, I fuckin dare you to look at it! For all 9 minutes in fact! Really I do love you guys, you've just got to get out more often!



I saw in an interview other month, where she was asked about the weirdest place to sign an autograph. She replied that it was on a man's penis. Asked why, she said that she was performing in a gay club. She's very popular in the gay world. With this song dears I think I've just fallen in love with her. ....

She's utterly just gorgeous!

The Empire Strikes Back!

Well just look at what the tide bought in for me this afternoon when I checked the mailbox:


Um, click to enlarge.

Well fuck! If I'd have been severely depressed as during last year, and at the worst of times then, I can't imagine myself having survived this. The smaller type plastic bag (the one that kills quickly instead of minutes of suffocation) would I'm sure 100% been implemented. It is the chance of time, the change of my mental state via the help offered by society, the hand from the deck of cards, that saw my hand of cards let me deal with this at a time when I was just able.

I've had my doubts darlings. This last week hasn't been easy at all. As in the last post, I've had to face choices; from either those parts of me that rely on what reserves are now there resilient enough to pick themselves out of the rubble of my head, or were learned enough to have partaken in the counselling and advice that stopped me from suicide in months past.

In all, they are something happening without me, a survival mechanism that has kicked in from evolution past? It appears Homo Sapiens have a penchant for survival. I've not consciously addressed my head in this, or sought support there. It has only been some sort of survival instinct. I'm glad for that. Whilst the higher functions in my head have failed, my instinct keeps me alive.....

I dunno, but I got through it. To be honest I don't know how. But I did. Well for now anyway; this may be the beginning of a saga to end all saga's!

"The Caution Blocks You from the Wind"

Well so far it's half way through the day and no disaster has befallen me!
*faints*

Seriously though, sometimes I wonder if I'd just be better staying at home all day! Shut the curtains and close myself off from the world, then I'll be safe and nothing bad will happen to me. I was actually doing that for a time last year, but in the long term it's just not practical. In the end not only does nothing bad happen, but nothing at all happens. It makes for a very boring existence, and I've in the past always been one to live life.

Life itself isn't always about living in some fantasy world of bliss where everything always goes right and nothing bad ever happens. It is rather the experience of life itself, both the good and bad, and what we take from those experiences. Each one I guess has an effect on who we are, and how we treat those around us. But we have to actually live life and expose ourselves to life's opportunities and failings if we're ever going to gain such experiences. Not shield ourselves from it and hide in some sort of cocoon.

My sister said to me recently not long after I told her about the HIV, "Gosh Peter, you've left no stone unturned in life have you!" In hindsight she's exactly right.

Last year I went through a time when I just wished I'd been given a better chance, a different hand from the deck of cards. But today not so. Yes, it's been hard, a very rough ride at times, and I've made a lot of mistakes along with the successes. But those experiences have each played their part in making me who I am today. They are my experiences, my life, my journey through this world. Today I wouldn't change them for anything; to do so would be to change me.

You Learn
Alanis Morissette

I recommend getting your heart trampled on to anyone
I recommend walking around naked in your living room
Swallow it down (what a jagged little pill)
It feels so good (swimming in your stomach)
Wait until the dust settles

[Chorus]
You live you learn
You love you learn
You cry you learn
You lose you learn
You bleed you learn
You scream you learn

I recommend biting off more that you can chew to anyone
I certainly do
I recommend sticking your foot in your mouth at any time
Feel free
Throw it down (the caution blocks you from the wind)
Hold it up (to the rays)
You wait and see when the smoke clears

[Repeat Chorus]

Wear it out (the way a three-year-old would do)
Melt it down (you´re gonna have to eventually anyway)
The fire trucks are coming up around the bend

[Repeat Chorus]

You grieve you learn
You choke you learn
You laugh you learn
You choose you learn
You pray you learn
You ask you learn
You live you learn

I especially like one of those last lyrics; "You choose you learn". I mentioned this in an email today, that I have a choice in all this drama. I can give into the pain, wallow in the past, and become paralysed again emotionally and mentally, or I can look to the future and keep going. Likely this will be a big bump in the road, but it can't go on forever. Things do get better.

I'm reminded also of that movie castaway with Tom Hanks, and near the end this quote:

And I know what I have to do now. I gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring?

I don't know how many times I've told myself that last few years, but it's absolutely true. Tomorrow is another day, next week another week... Who knows what they'll bring? More experiences yes, and I reckon I'm due for a few good ones by now. At times it seems I just can't win.

Two Fractured Ribs

Got the X-rays back today. Couldn't believe what I was reading:

There is fracturing of the right fifth and sixth ribs at the costochondral junctions. There is minimal displacement.

FFS, no wonder I was in bloody pain!

Bruising also is still coming out on my arm nearly a week later.


Solicitor is talking about going ahead with action against them. I'm in two minds. On one hand the last thing I want or need is another court case to stress me out. Other hand I can't believe I got two fractured ribs simply for swearing at the cops.

Cried a little when I got home, just the realisation of what they'd done to me. I'm facing I'd suppose some time having to deal with the pain involved.

Rang the Ombudsman to see where my complaint was at. It does take time, however it will be referred to the police complaints people and the whole process overseen by the Ombudsman independently of the police. Some action at last. I also told them to include in the complaint that medical tests showed fractures.

Thank You

I started this blog recently as I wanted to vent to myself and organise my thoughts at the end of every day or two. I have after starting it trusted a few people with this my diary. The feedback has all been positive so far.

The emails I've gotten in the last few days during this latest drama have been very much appreciated. To know that people that I care about, care enough about me to show their concern means a lot. Being isolated for many years as a primary carer means you lose everyone. After a while friends stop ringing, then relo's, then friends of relo's.

And after the partner dies, nobody rings after about 3 months. You end up completely alone. Strange as it is in the middle of Sydney. Middle aged, no longer giving the slightest fuck about dating. Or to bother with standing in a pub so packed that everyone is yelling to hear each other, or the music is so fuckin loud that you have to sit there like zombies entirely unable to communicate. Cripes, no wonder I ended up at sex on premises venues. At least you can talk to people when you're having sex FFS!

I wonder at times with my shit that people might think I'm making it up. I dunno. I can't believe it myself. It seems every time I go forward a bit I get clobbered, in this last cop thing literally! I AM so sick of this shit. But I AM so glad of those I know online. The concern is touching and very meaningful. And the very few that read this online from real life that I've trusted to read this, your contribution even more so as you care enough about me to respect that trust. And Simon, thank you so much...

Also AM so very fuckin glad of where I live. I've been presented along my way to suicide, with top notch professional help that stopped me. For free. Simply as I'm an Australian. And given me along the way the means to overcome such things as this latest BS in my life. I can't imagine where I'd have been 12 months ago if this police crap had happened to me then. Today I find myself bouncing back; even a shock to me.

Resilience was something I had in the past, something in my personality. It's not something that I've had in 12 months at least. It appears resilience is something that has survived my collapse, picked itself up out of the mental rubble, and continued on of it's own accord. I never expected such lasting strength from the rubble.

Today was very quiet. Slept with little pain until about midday. My normal doctor gave me anti-inflammatorys which reduced the pain by about a third. After waking I took pain pills close together as it'd been a while since, and the pain had gone through to my back as well. Muscles very tight in back after 30 years lifting, so doesn't take much for them to go into spasms. Went and got X-ray done local X-ray place up the road (pick it up tomorrow). Few quiet beers with locals at pub. Cooking small lamb roast for dinner.

Still Not So Psycho!

Very encouraging visit with psychologist this morning. Although body is battered and bruised, it appears my head has remained intact! Yippey! No lasting suicidal thoughts, no lasting depression, actually spent time smiling and laughing in the session.

Felt I needed a sounding board to see though. Given my mental state last year it certainly wasn't worth the risk. Not one of those brave/tough people any more who staunchly battles on through thick and thin alone. These days I'll freely admit when I'm in trouble and need professional help. It's there, available, free, why not use it?

One thing he mentioned that didn't occur to me. The fact that I'm HIV+ makes what the cops did even worse. Also the fact I'm not that young any more, am approaching 50. You can't just throw someone around like that at that age and in that condition. They didn't know about the HIV admittedly, until later on with the doctors at hospital when I told them of it (as you of course need to do). It's got me wondering now if they then considered they'd made a big mistake. It will be interesting now if they actually do follow through with charges in the mail.

Also the hope that this whole thing will be just a bump in the road (well a very large bump). Yes it was a shock and all, but well life goes on...

The Aftermath

Decided to have a week off work. Went in this morning and just too sore. Saw the guy who's organised my rehab schedule at the gym, said I was "all banged up" and to go home. Still have some long service left, lucky for that as have used up everything else for the moment!

Rib is really fuckin hurting. Pain pills only make it bearable. Am seeing my regular GP tomorrow (he specialises in HIV patients) so may have to ask for some stronger pain pills. Hurts to breath or cough, is agony to even turn over in bed FFS. There's also bruising coming out on my arm that I didn't see before, looks like where the cops grabbed me. The concrete grazes don't look too healthy either. Yeah this is really what my immune system needs; needless infections to fight. One of them is on the same knee that is recovering from the fracture. I guess it's lucky that injury at least wasn't exacerbated! They threw me around like a rag doll. I am after all only 68 kilos.


Mentally I feel like am in sort of delayed shock. I dunno, will discuss it with the psychologist tomorrow (made an appointment with no problems). The suicide thoughts passed very quickly thank fuck. Am still feeling however rather shaky and vulnerable. It has been such a violation. Humiliating, stressful, emotionally draining, scary, and most of all an interference in my struggle with depression.

Seeing my solicitor this afternoon. Will be very interested to hear what he has to say. He's a bit expensive, but he really gets results.
-----------------------

Edit:

he says to sue the cunts.

Support

Lovely night of pain last night. Spent it inhaling pain pills, saying "ugh" a lot when moving, and mopping the sweat off my face. Brilliant!

The sweating often happens because of the HIV. Even with air conditioning on I still sweat sometimes. Have a towel on my pillow now permanently to soak it up. Mainly on the top part of my body for some strange and bizarre reason. Having a (likely) cracked rib and painkillers on top of the sweating makes for rather an uncomfortable time. The pills make me sweat even more, along with the anti-depressants. Was lucky I have strong pain pills anyway because of the knee, otherwise I'd have really been in the shit!

People have been very supportive. Know a few at the local pub that I often chat to, they've been getting me up there to get me out. Nobody can believe what happened on the bus! And have been in contact with a guy out of Sydney who I've gotten very close with. It makes all the difference to have someone like that in your life who genuinely cares.

Early days yet with this guy, but the times we have been together have been very intense. It's rare to feel so strongly so early on by both people. Told him about the HIV and he's not fazed. We live very separate lives though. Don't know quite where this will end up, but certainly don't want to let go of what we have right now.

Fuck I hate the cops....

Had a terrible experience last night. A real set back. I've sent the following email off to the NSW Police Commissioner, the NSW Ombudsman, the NSW Council for Civil Liberties, and the Sydney Morning Herald. Edited here for privacy reasons.

Hi,

Dunno if this is worth investigating but I did find it to be quite a horrible experience.

Last night after a hard days work I had a few beers with mates as usual at the pub. After doing so I bought a pizza and 6 pack, and got on a bus for the short trip home (is only a 10 minute walk but am recovery from a knee fracture - work related). As sometimes happens, the transit police got on to inspect tickets.

I was sitting opposite the open back door. There were two police officers there from the local Police Station, one I recognised as the lady who tried to get my daughter to testify against me in a recent court case. The transit police were enough IMO, there was more than one of them. I wondered had the police nothing better to do than to catch fare avoiders on the bus? I swore at them. Yes a mistake on my part, but in no way deserving of what followed.

The lady officer asked on the bus if people had been offended. After going through 3 seats with nobody so, they came across an older woman who said yes. Next thing I know I'm being physically dragged off the bus by the police, thrown to the ground outside the bus (my pants half way down my behind for all to see). One bloke got off the bus and expressed his disapproval of what the police were doing. They went on to handcuff me (the first time in my life I've ever had that done) and got me in the back of the paddywagon. I was treated very roughly physically, despite there obviously being an elastic knee thing on my knee very visible. This morning I have sore ribs and grazes from the concrete.

I am also recovering from severe depression, which was well known to the lady officer. I spent 6 months of last year very close to suicide, and today am gladly feeling much more positive after months of counselling by a psychologist and psychiatrist, and being put on a very high dose of the antidepressant Efexor. To be handled like this however, just on the way home from work after a long day, and finding myself handcuffed in the back of a paddywagon simply for swearing, was too much. I broke down and expressed a desire to suicide; something in itself upsetting as I've not felt that way for some months now. It seemed a big set back in my recovery.

They ended up taking me to hospital accident and emergency because of this. After a few hours I'd settled down, and the psychologists there on duty let me go at about 2am, not seeing the need to keep me in overnight.

I am appalled by the police behaviour in this matter. Not only did they fail in their duty of care physically despite my knee injury, they also failed to consider my mental state. They drove me to thoughts of suicide. Something which I'd left behind me until now. The lady cop knows my history with depression.

Please let me know if you want to investigate this,

Thank you,..................

It's been a long tough road the last few years. To have this happen for bugger all reason is discouraging to say the least. To be driven to that point by people who are supposed to be there to protect me. It's taken a huge effort by all to get me to this point, only to be pushed back.

My 19 year old daughter showed up at the hospital, quite appreciated that given the strain on our relationship in past months. Of course I had to let them know I was HIV+, and in doing so also inform them that my daughter didn't know and to be careful about what they said around her.

I'll tell her one day, but at the moment all it would do would be to complicate an already fragile relationship. I'm not about to cark it, am quite healthy in fact (apart from presently having sore ribs and fuckin concrete grazes).

Dunno where this will end up. It's likely the bitch at the cop shop will charge me with resisting arrest or some shit. In which case I'll have to re-employ my solicitor again at considerable expense. Suppose it would be worth it to see him have a field day with her in court.

Have emailed my psychologist about it, was going to wait another month before seeing him again but under the circumstances won't wait that long now.
--------------------

Edit:

Went to doctors today. I have either a bruised or cracked rib.

PSYCHO!

It has been a running joke for months now with me that I'm evidently rather nuts! And if people don't believe me all I have to do is drink slightly too much on top of the happy pills and I turn into a raving blabbering weirdo!

Actually, In some ways I quite liked being a nutter there for, well, about a year nearly now I think. It was extremely unpleasant thinking of suicide on a daily/hourly basis for 6 or so months, but on the bright side it did mean I got all this attention off brainologist support type people who wanted to talk to me and give me wonderful modern drugs to make me feel better.

Feeling better actually wasn't some magic drug but took some time to accomplish. It involved intense counselling/monitoring with both a psychologist and a psychiatrist at the same time. The happy pills were so strong that they had to be put up very slowly to minimise the side effects, and I had to be monitored at every stage by the brainologists. Such was my level of depression and the stage I was at with suicide. For a while there I was measuring plastic bags over my head (I decided on the smaller most suffocating ones as I didn't like the prolonged suffocation thing).

After some time I ended up on a very high dose of Efexor; 300mg a day. Too high for the normal happy pill taking thing here, so the brainologists had to get permission form the health gods in Canberra for it to stay affordable on the PBS. Short phone call, but I did feel sort of special at the time! I was now up to 300mg! Hooray!

In all honestly though, it wasn't until I got there I felt OK. I remember one morning waking up and for the first time in ages thought to myself that I actually felt "OK". It had been many years, and I couldn't even remember the last time feeling like this. Brain pills don't work for quite a few people, but thank fuck they did for me.

I must have to say right now, I only became eligible for such intense help after I became HIV+. It was all free, apart from the meds which were well affordable. It's entirely ironic that exchanging an HIV+ diagnosis lead to the help that stopped me from suicide and saved my life. Not a good swap I know, but a very ironic one.

Anyway..... I saw my psychologist today after a two month break, of my choosing. Judging by the fact that I didn't burst into unstoppable tears during the hour session, and that he gave positive (oh I hate that fuckin word now!) feedback, I'd guess I'm not quite as nutty a psycho as I was.

It is of course with trepidation that I embark on this new journey of not so psycho. It does now mean I have more responsibility to look after my own head independently of the brainologists.

I throw the oar in now on this new journey. No not a motor boat, just an oar for now. One that will rediscover who I am after the collapse. Rebuild bits and pieces of my former self, but leave much of it in the rubble on the floor. I will have new priorities, new goals, new aspirations.

One thing is for sure, I will never be the same.

Picking up the Pieces

Seems depression is rearing up a bit lately. It's getting very hard to go to work, as I'd rather stay at home closed up in the house. Have been here before, it's an issue to do with at least knowing that nothing bad is going to happen. I feel safe inside my own home. Just me and the cat...

See my psychologist tomorrow. Has been a while as I needed a break from all the counselling and wanted the opportunity to take charge of my life again. Has been reasonably successful, have sorted out some things and survived intact. This depressed feeling though worries me. I don't want it taking hold like it did last year.

Last year being the worst year of my life. Had already had the last straw by the time I was told I was positive. Became extremely suicidal, and if not for the intervention of those there to support those with HIV would not be here today. Endured a mental collapse to where I felt I was simply sitting in a room full of rubble wondering where to go from there.

Have started picking up the odd piece or two. Got a loan and paid the credit card off. Went into huge debt very quickly as I lost the ability to control money, along with other everyday things. Shopping, working, just basic organisational things of life became extremely difficult. In many ways almost unimportant to me, as during that time it was about my very survival, not how well organised I was.
The debt, and other life things not looked after, became collateral damage. Unavoidable. Beyond my control. Not my fault. My concern and attention was elsewhere
.

First post.

Today I realised it has been just over one year since diagnosis. About 16 months since infection.

I work for a large company, but only 3 people there know my status. Many who work there just wouldn't understand; they are family people from Western Sydney.

I'm getting rehab treatment onsight for a work injury, and today I told the 4th person as he was in charge of that rehab and it was a related health issue. Now there are 4 people who know. Disclosure is such a minefield! He was really good about it but rather ignorant of the latest advances in meds and all.

It's been difficult at work lately as it's a physical job but have been getting very fatigued. Last week had 2 days off and spent most of them in bed asleep. My last blood results were very good, but my body uses all it's energy to fight the virus and I'm easily exhausted. Starting to wonder how much longer I can keep going with this job.

Today I got the blood taken for the next quarterly result. They will SMS me with them in about a week and a half.

I'm not on meds yet as am relatively healthy. CD4's high and viral load low.

Peter.