All aboard the Atheist Bus Campaign

"They have to take offense, its the only weapon they've got!"

Hibernation

I feel like a bear in winter sleep the last few months. Like today I can sleep anything up to and including 15 hours at a stretch. No, that's not a good thing I know, but its just one of those 'small' side effects of my medication.

How I'm ever supposed to do a full time job again I do not know.

That saddens me.

Not because of the job, I've learnt over the last years that I really can exist as a person without the emotional crutch of a career, but because it means my energy level is so low its almost non-existent.

Ah well, I'll just call it beauty sleep and say I need it more than most.

(before somebody else does) ....

Demons

"Nothing's gonna harm you

not while I'm around.

Nothing's gonna harm you, no sir,

not while I'm around.

Demons are prowling everywhere, nowadays.

I'll send them howling,

I've got ways."

"No-one's gonna hurt you,

no-one's gonna dare.

Others may desert you,

not to worry,

whistle, I'll be there."

"Being close and being clever,

ain't like being true.

I don't need to,

I would never hide a thing from you.

Like some ...."

From 'Sweeney Todd'

This is the song I used to sing to myself in my head when things got really bad during the 'Herman' days. When he was being raped every day by his German ex and I was helpless to intervene. Herman had decided that resistance was futile and had forbidden me to intervene. He had, in fact, emasculated me. In this way he forced me to watch, or at least listen to his degradation in a state of utter despair.

Every night I would lie on my stretcher bed in the attic and listen to the shouting and screaming below. Formless words in a language I did not understand. 

Then the silence. 

Then the grunting. 

Then sleep.

In Memoriam

Edwin van der Knaap

30 November 1968 - 20 November 2008

I should read the Poz + proud Blog more often I know, but I seemed to have missed this sadness too.

Poor Edwin. Life was not easy for him in very many ways.

In Memoriam

Gerard Boels

7 March 1957 - 1 November 2008

I only found out today when I emptied the mail box and found the new Hivnieuws.

Gerard is finally dead. Why finally? Because he fought it all the way. From the moment I first met him almost 30 years ago up until the last moment I saw him just before his birthday, his unique mix of stubborn refusal to accept defeat and hysterical enthousiasm have always typified him for me.

We met when we met, we didn't when we didn't. We weren't friends but we definitely weren't strangers. I think we both knew more secrets about each other's lives than most people close to us.

I remember his refusal to even entertain the idea that he might have aids, so long ago, I'd already lost Herman to aids and he knew that but still he wouldn't talk about his own vague symptoms, aches and pains.

He'd disappear for months on end when he felt ill (ugly), and then re-appear as if nothing was wrong.

I found him again years ago at the Aids Fund, a different person.

Poz + Proud.

I won't miss him every day, because I never saw him every day, But the world will.

Old Year

As many of you know I really hate New Year's Eve.

And for those of you who don't -

I really, really, really hate New Year's Eve.

Its the start of a long Winter which no-one except the penguins are looking forward to. Mentally disturbed people everywhere cower behind the curtains clutching their bottles of anti-depressants until the sun rises again sometime in April (if we're lucky). Previously boring stay-at-home people go out to clubs and bars where they meet all the other previously stay-at-home people who they only see once a year on New Year's Eve and promise to keep more in touch with next year which of course they don't.

The alcohol flows, nay, gushes through the emotional gutters of the soul resulting in a thick phlegm of pseudo soul searching, looking back on a year of missed chances, mistakes made, resolutions broken.

I'm staying home - Auntie Dottie is on the Angel Cruise and good luck to all who sail in her.

The Queen's Christmas Speech 2008

Watch and shiver ....

In Memoriam

Ms Eartha Kitt

1927 - 2008

Alternative Medicine

For the last few months I have been seeing a Chinese Herbal Doctor. There's a large surgery, dispensary, and training college just on the other side of my canal. Hey, I live in Chinatown, what did you expect?

Its been an eye opener to say the least.

My problem with the general (Western) Practitioners is their inability to treat me as a whole person, holistically. For example I know that certain of my ailments are caused or at least aggravated by my mental state of health, and/or vice versa.

My Chinese Doctor(s) don't seem to bat an eyelid when I reel off my list of symptoms ranging from joint ache to an infected fingernail that won't heal. Blurred vision and backache. Constipation and dry eyes. They seem to regard all these seemingly unconnected symptoms to be a part of the way the body communicates and displays illness.

It was a relief the first time to have a Doctor actually take interest in all of my symptoms, and offer a plausible reasoning afterwards for their connection. And also say when they had no connection. To them, the patient is absolutely responsible for their own well-being and as such must take responsibility thereof if any positive state of health is to be achieved.

Its very empowering to me to be told that I can make a difference to my health in a positive way. Negative influence is also (up to a certain point) my own responsibility, that is made very clear at the beginning of the treatment - well-being can be achieved, but will take longer to achieve if advice is not taken.

All this is a far cry from the hospital hit and miss diagnosis technique.

Nurse:

Doctor, the patient has lost his arm!

Doctor:

But I'm a heart surgeon, tell him we can't do anything about that until I've got his heart started again!

Angel Cruise

Dottie counting the Old Year Out and the New Year In on the Angel Cruise.

http://www.engelamsterdam.nl/angelcruise.html

Angel Cruise

Onno got Sir David (Attenborough) and my Auntie Dottie together to make this infotainment clip for the Angel Cruise this New Year’s Eve.
It’s one of many more to come I'm afraid .... Its Sunset Boulevard all over again ....

anyway, if you haven't got tickets yet I'd hurry if I was you - they seem to be going fast ....

De Engel Van Amsterdam 'Angel Cruise'

It's the Little Things

I'd just like to say that for us Hiv+'ers it's not the big things that do our heads in.

Being in hospital is not pleasant, but somehow we rise to the occasion and find the motivation to keep smiling and laughing our way through the pain and humiliation.

Being winched out of a window on the second floor in broad daylight was extremely embarrassing, but it had to happen and as such I know that there is really very little point in moaning about it.

No.

It's the little things that do our heads in.

It's an irritatingly painful infected nail that won't heal.

Day to day stuff.

Lily Allen - Smile

Thanks to Leo for reminding me that Lily Allen is not just a pretty face.

The Untouchables

Its not something any of us like talking about, especially the english, but intimacy is an important part of our lives.

Or the lack of it.

I do feel untouchable a lot of the time. This is very difficult for me as I am by nature a very tactile person. I like to keep physical contact with loved ones around me.

Something about touching other people calms and reassures me, and I hope them. Its my way of saying non-verbally that they are a part of my life.

Real intimacy, down dirty intimacy, full insertion intimacy is something I miss very much. Sex was always my way of being close to other men when there was no emotional bond. Having sex with them meant I could feel their skin, smell them, taste them.

Since my sex life has become so dramatically reduced, I can't help but feel a sort of deadening happening in my body. I'm not used to people touching me unawares. My body goes into shock almost if someone tries to get too close, especially 'down there'.

Alcohol and drugs helped to loosen my inhibitions, but since I have to be careful about that now I'm afraid the sex has gone completely out the window.

So I bought a Teddy bear for the first time in my life, and I sleep with him, and that's okay as long as I don't feel the need to fuck him.

04:00 am

04:00 am and I feel wide awake.

I feel like I'm jet-lagged.

I feel like a cigarette - and that isn't funny after 8 years of abstention.

It's lack of stimulation of course. Watching television for hours on end will tend to dull any nerves had. Anyway I can't do that, its boring.

Dressmaking involves standing and sitting for hours on end so that's out of the question for the time being. Although I have been doing some of course.

Computer? Trying to make a 'mix' on the new software I downloaded but its very complicated and mysterious. It gets me frustrated that I don't understand how it works, or even how the manual works. I know it can do all the things I want it to, but how?

Anyone got any experience with this sort of thing?

I'm trying to speed up 'Too Funky' to match 'Flawless' - but its beyond my skills at the moment.

Ah well, I'll just keep trying ....

Next?

A person goes to the GGD, or the local doctor for the Hiv test.

Or they end up in the emergency ward of the local hospital and end up giving permission for a Hiv test.

Or any number of scenarios.

And the result comes back within 45 minutes, a week, 3 weeks, as positive.

What's next?

I think most people will be surprised to hear that the answer to that question is:

Nothing.

Or at least very little.

Ideal scenario:-

Person gets referred to a hospital in Amsterdam by their friendly local doctor. Person ends up in the capable hands of one of our wonderful nursing specialists. CD4 levels, viral loads etc are all discussed, treatment methods suggested, next appointment made.

What's next?

Well, nothing really.

Or, once again, very little.

Anything that happens next will have to be on own initiative.

Hopefully said person will find other Hiv+'ers, especially if he/she is Gay but they will take sometime to find.

In the meantime, all the feelings of remorse, pain, grief, fear, loss etc. will have to be worked through on their own or with partner(s), friends etc.

I don't think it should be like this.

Do you?

Exhaust pipe needles

Dear reader, you of all people know that the last thing I wanted was to be rushed into hospital again, for whatever reason. But there I was again last week in the emergency ward of the OLVG, and don't tell anyone, but in my usual bed too. At least I was in a new ward afterwards, although Neurology is one of those departments that always sounded very vague, and nothing has happened to change my mind on that one.

I'm a fan of the OLVG as everyone knows but not a fan of some of the specialists and/or doctors. God help me, the female ones.

I don't know why it works like that but it does. 

The man in the bed next door to me was recovering from a craniotomy, that's skull surgery to you and me, and had a wound over half his head held together with stitches that would not have been out of place on Frankensteins monster. The doctor decided that he needed a lumbar puncture there and then, in bed, in a full ward. Now the man was obviously not completely 100% in our world and the insertion of what is laughingly referred to as the 'needle' didn't go as planned. Three times. 'Needle' my arse, its a fucking piece of steel as big as an exhaust pipe that they try to insert into your back without painkillers.

He of course screamed the place down, I had to leave the ward, there's just so much pain and suffering I can listen to. But not before I had heard the doctor reprimanding the patient that he wasn't being very helpful by responding in that way, and that if he didn't co-operate it would only take longer because she was determined that it would happen today.

This is the best hospital in the Netherlands. Still, doctors, specialists, surgeons treat patients like small petulant children.

Not all. Dear lord, no. There are wonderful people in the OLVG.

I'm just saying, once again, that although the powers that be try to represent our Health Care System as having no problems whatsoever, its not true.

In particular an Aids Machine that denies that patient care for Hiv+'ers falls short.

So long a hiv+'er stays within his or her own department (usually Internal Medicine) then they are usually treated with the utmost care by doctors, specialists and nurses who are worth their weight in gold. But if they stray to another department for whatever reason there are no guarantees.

On the Neurology ward I kept my Hiv Meds on the bedside trolley so that I could get at them easily. Visible to all. I don't see that as a problem, the only people who would know what they were, were other hiv+'ers and doctors. No big deal.

Yet nurses still referred to them in whispered tones as 'your other medication', and remembering to take them was my own responsibility, not theirs, that was made clear very early on.

Health.

Its a subjective opinion.

To me its one thing, to you another.

But to a health care professional it means a completely different thing.

Finding the median between the two (three) is something we all need to work on.

But do we all want to?

Men of Inseam

Joe Oppedisano for Inseam

Beautiful

Dark

Its 8 am and its cold, wet and dark outside.

Inside its warm and cozy and I'm already bored.

So I'm afraid dear reader that you are going to be the object of my distraction for the next few weeks. That should please at least 1 person I know (I'll get round to writing you a mail today).

My routine is back to what it was a few years ago - sleep wake take pills eat sleep wake take pills eat .... you get the jist of it ....

Sometimes it really does feel like 3 steps forward and 4 steps back - but that's not quite true of course. Essentially I'm healthier than ever, just chronically ill etc.

The whole 'health health health darling' thing is difficult to comprehend when you are Hiv+. I'll try later to get a handle on it.

Sneezing Can Seriously Damage Your Health

Well that was a bummer to say the least .... bloody hell .... I sneeze and then suddenly I'm on the floor screaming in agony unable to move in any direction at all for 2 1/2 hours.

Winched out of my flat through the hole where the window used to be by the ambulance men and the fire brigade (after receiving so much painkiller that i can't remember any of it or them) and then coming round in that 'oh so familiar' lime green OLVG emergency room ....

So Love Dance went ahead without Auntie Dottie and she won't be up and about for another few weeks.

Now I'm at home, drugs, drugs and back up drugs to kill the pain.

The Doctor said "Its just bad luck".

Grrrrrrrrr

But many thanks to everyone who is helping me to get back on my feet, all the sms's, mails, telephone calls etc. Wonderful and very, very much appreciated, thank you :-)