ok week sixteen of second time round

Hi guys its second time around for me, not posted in ages as been busy with home life etc.

This time im off work 16 weeks in to second try at therapy and wow im HCV negative - work are trying to get me to go back - and dont understand that i still need to complete the course of meds. I am seriously worried because first lot of treatment i worked and it rebounded at month ten after never really hitting negative - now its really working and i am convinced that itr is the lack of stress and pressure and the ability to rest when needed that is killing the virus.

Any hows hope all is well

lewis

The Yearning Tree

Hi guys how you doing? its been a while since i wrote in you in fact nearly a year has gone by. The fact of the matter is that my life has changed beyond recognition.

My treatment failed and so i am still co infected with HIV and hep c however i met an amzing man, a german called joerg and we are very much in love. We have been together nearly a year now, and although everything is fine i have given my partner Hep C and i am now supporting him through hep c treatment, so i thought i would give you an update on my thoughts, feelings our ups down and the best thing of all a little bit of fantasy.

I have called this section the yearning tree, because although everything is great, i wish i earnt more money, i wish joerg hadnt got hep c and i wish in general that we could have the things that we fight so hard for, so im going to sprinkle a little bit of my special brighton fairy dust on this section and incluse some short stories, poetry and just a little bit of kinky fantasy on a life less ordinary so i hope you like. speak soon my fellow peeps, see you soon.

brighton Pride 2007

wow

PRIDE:a becoming or dignified sense of what is due to oneself or one's position or character; self-respect; self-esteem.

ok guys well it was brighton pride on the 4th of august and oh what a day it was!

The theme this year was musicals so i thought it was appropriate to post the picture of the part of the parade where there were about 50 dorothys! singing yellow brick road lol. it was a sight!

The parade also encompassed floats with the lion king, rocky horror show, and my personal favourite, the phantom of the opera!!!

About 150,ooo people attended and it always ends up at preston park where there are bars, a fair ground, a chill out area and glorius food.

On the saturday there was a street party in the evening, people were dancing naked on the bus shelters lol and the sunday was a more civil affair with stalls and bbq's all in all a fab weekend.

It was such a great day guys, and is everything that brighton stands for diversity , tolerance and above all respect for fellow humans.

Love is a human right

hugs

lewis

x

giving, getting, going

ok i havnt wtirrten in my blog for a while, so this could be a long one!

Unfortunately for me the Hep C treatment hasnt worked, i managed 32 weeks of treatments but apparently the virus had reappeared after 20 weeks in to treatment.

As you have probably gathered it sent me rather loopy, but since i have stopped treatment i have come back more or less to my normal self.

Because the hep c was caught in the accute phase i dont have any liver damage and the hospital are keeping a close eye on my. Apparently they dont get many people like me - go figure.

So what have i been up to? Well i have been enjoying the return of my life really, i have been on a few dates, which has been nice, but strange, and going out with friends, and although i shouldnt have i have been partaking in a few drinkies.

But things are quieting down now, and the old things that used to bother me have returned, my weight has returned with avengence but unfortunaltely i am learning that i cant get away with eating cheesecake anymore, and now that i am not struglling through combination therapy, i am struggling with all the old habbits, smoking, being bored with my job, and generally being a grumpy old git!

This has taught me alot, gosh i didnt realise how nutty i had actually got while on treatment and god do i value my sanity! The hospital have asked me to set up a support group which i intend to follow through on.

I have been on the commercial side of health care for 10 years, and after my experience it is time to give something back. I am dealing with the hep c nurse at the moment to see what we can get organised, because there isnt a gropu in brighton.

And you might wonder what the picture is of above, well its a drawing of part of the village that i was bought up in in worcestershire, a little known place called inkberrow in worcestershire. I thought it was appropriate, because the hep c experience has truley bought me and my family closer together.

I have just had the most lovely weekend, i drove to shrewsbury and went to a gathering of the online support group, next time i will bring a camera, it was lovely to meet you all. I was nervous when i met you all, but within a couple of hours started to feel at home, next time i want to spend more time to get to know you all, but being in the midlands i felt the need also to go and see my family and my little nephew, who is just sooooo cute!

So just to finish off, just to let you know my post treatment hep c belly is growing, so i am doing the half marathon for the sussex beacon HIV charity in brighton. Raise some money and loose weight. I am dusting off my trainers, getting back in touch with my trainer and lets see what happens. i may have a couple of the nastiest bugs known to man, but it aint going to stop me moving forward. This new positive outlook is primarily due to certain members on the forum and family and friends, who without you all, i dont think i would still be here.

Life is strange and interesting, you start out when your younger thinking you can shape your life, but in the end its your life that shapes you. x

hugs

lewis x

back to work!

well its saturday morning, and ive had my first week back at work sice going off sick at the beginning of may!

It hasnt been that bad, but again i havnt worked that hard, really spent the time doing paperwork, and seeing a few customers.

Next week is going to be the real challenge, this is when i have loads of appointments, seeing clients and business meetings, so we shall see how it goes!

My boss was out with me on thursday and told him exactly what i had got, he stated that if im starting to feel crap, i need to tell him, he would rather me have the odd day off sick, rather than getting chronically fatigued and having 4 weeks off. So things could be on the up.

My boss has historically been very bad deaqling with sickness, but think occupatonal health have got to him.

I can tell you it is quite weird having the ogre be nice!

hugs

lewis

xx

a bit of light refreshment

Gosh i wish i had a cock that big hehe!

Ok has some bad news on wednesday afternoon, my hep c viral load has shot back up and am seeing the hep c nurse this morning.

It is strange, but i think i might be slightly relieved as well as a mixture of guttedness!

I have not been a complete angel on medication and some might say you silly bugger, but to be honest on the whole i have tried my best.

I work on my own, and live on my own, and so now and again have gone out and had a mad week end. This has involved the odd drink and other intoxicating substance, but i have dealt with alot of shit since july last year and it has been my coping mechanism, my pressure gage.

I have shut myself away enough over the last six months, because medication has made me uncertain, insecure and lacking in confidence. Most of the time i have been scared of leaving the house and had turned into a paranoid nutter.

By going out and having a little shandy or two i have been able to deal with social issues and get out the house for a change, it has been my relief, my steam release.

But now im faced with the news that my viral load has shot up. The nurse thinks it is due to other medication i am on which has stopped the hep c medication working, so they are going to do another pcr test this afternoon.

So what are the choices i face right now?

Well tonight im due to do my 29th shot, which means i have 20 weeks of hep c meds left.

I think the questions i need to ask are the following

1) if i am a little angel completely and utterly for the next 20 weeks, am i going to be driven mad by the isolation and am i going to clear the virus?

2) I have now changed my other medication so will this make a difference to the hep c med effectiveness.

3) At 12 weeks i was not undetectible, but had had a 2 log drop as required?

4) Am i classed as a slow responder and if so would they consider 72 weeks of treatment?

5) The nurse said this could be a false result could it be? how likely is this?

well i dont think i have been that big a cock, but you decide!

hugs

lewis

xxx

ok and now for todays news

ok had the results of my PCR today and the virus has broken through big time, its back in the millions and i really do not know what to think.

In a way i am lucky, i caught this early, and i dont have liver damage yet, it will be 20 years before that happens, so in a way i have to count my blessings. it doesnt stop my head being all over the place though.

My neutrophils are rock bottom and this week, the last week before going back to work, i have had a severe tooth and gum infection, i am on antibiotics for it and just feel really shit, have had nasty stuff coming out my mouth and am totally fed up!

Have got to go back to see the nurse on friday to discuss further options as this could be a blip caused by other medication that i am on. Im trying not to get upset, but to be honest, the hell i have been through the last six months just makes me so fucking angry, i always knew there was a chance this would not work, but was assured i had a very good chance.

all i can say at the moment is bollocks. to be honest i am totally numb .

Anyway im signing off cos just dont know what else to write.

lewis
xx

cor blimey!

Don't panic!

Literally just posted the last one, but thought id just let you guys know, just by expressing this, i feel tonnes better, or should i say a few pebbles lighter - thanks Jae, chrissy and Uncertain.

Think im going to try and get some kip again, its now nearly 2am and hopefully getting it out, means ill get some sleep tonight.

big hugs

lewis

theres something not quite right

Theres something not quite right tonight

Thoughts running through my head

lay here in the quiet and dark

sheets clinging to my legs

Can you see? Whats running through my mind

The darkest thoughts, to leave it all behind

These things arnt safe, god where is the good?

My mind plays tricks, thoughts of gushing blood...

Sweat trickles down my spine,

the darkness seeping in

Where is unconcious bliss?

Enduring the passing time

Can you see? Whats running through my mind?

The darkest thoughts to leave it all behind

I hold out my hands, pleading in my bed

Cos all is done, but i dont want to be dead

Laying here in the night

knives run around my head

just had a vivid thought,

graphic way to end up dead

Can you see? Thoughts running through like lead

A Car, the sea, my life , my soul

the car hits a barrier, a pole

flys up smashing into my head

These thoughts are the darkest wine

Of blood and violence i find

Whats wrong with life,

why cant dying be kind?

Can you see? Thoughts running through my mind?

the darkest things, to leave it all behind

These things arnt safe, when all is said

The darkness comes when sleeping in my bed.

Isolated virus killer

wow found this on you tube, pretty much describes everything

hugs
x

Hmmmmmm!

Cor ! This medication they give you for hepC is toxic Stuff. Started Anit - depressants monday, as really been having nutty side effects hit me.

Very dark thoughts, and a place that i don't want to go to very often.

Had a really lovely weekend planned, was driving up to Worcester to see my sister tonight, and gorgeous little nephew, stay at mum and dads, and then drive up to the hep C forum on saturday, however my collective brain cells had another idea.

Watching holby city last night, and looked around the flat, been quite under the weather recently, so not been my usual efficient self. The flat is a state, and im due back at work monday, and i started to think of all the things that would have to be done in order to achieve all my goals, but can't cos i am physically and mentally knackered! My heart starts racing, panic attack ensues. i go to bed and start having very nasty thoughts.

Finally get to sleep, wake up this morning (think i finally fell asleep about 4am!) at six thirty and just for an instant everything was ok. Then the same horrible feelings began to invade.

Its like an insipid black fear that crawls down your shoulders, drips down your back and makes you shudder! A fear and depression that nothing is alright and everything is wrong.

You worry about what people think of you, whether you look strange, in fact everysort of self doubt available, piles on you like a tonne of gravel and to get out you have to remove it pebble by pebble.

Rang my parents told them i wont be coming up had a panic attack
Messaged some dear friends on the forum to appologise for cancelling - they rang me, the little sweeties, panic attack ensuing. big hugs to yuo both!

I think your amazing!

Rang my sister, and work colleague and got myself off to the doctors - this shit is fucking strong!

Spoke to my GP, explaining, he knows my history! Signed off for another two weeks.........

He did suggest a small does of an anti psych drug, but refused saying ill see what the Anti depressants do! Woah!!!!

Deep breath right now!

So get back home, finally starting to feel the pressure is off, i can get through this my own pace and own way. Decide to have a bath. Shave my head, generally try and be bit more in control, possibly considering cleaning the flat, at least it is only one job, one step forward and not a tonne of gravel all at once.


My mother rings, mum if you read this, take note!

I know they love me and want to be there, however my mother says " Were coming down tomorrow to give you a hug!"

Would love it, but - i look at the flat, think of allthe work i have to do, what i will have to do in order for me to feel comfortable with my family coming down, and instantly

Oh my god - washing - loads of it, cleaning -loads of it, self grooming - loads of it, actually every job in the house really, and instantly THAT PRESSURE IS BACK! again, rather than one job, 20 jobs and that black oil begins to flow!

So mum if you read this and i think i expressed it on the phone but just incase your still thinking to show up tomorrow.

The only control i have right now, because of this medication, is that i can get through this in My own way, and at MY pace. And as much as i want a hug, let me come up and get one, let me get one when i decide and when im mentally prepared.

I love you all deeply, but put this extra pressure on me now, and my control goes away.

So calling my sister later to reinforce that point, and if they do appear tomorrow morning, iknow it is done for a good reason, i will be very angry.

Hugs

From lets hope the cipramil kicks in soon!"

Gay Pride Brighton 2006

i love this town

side effects

Im in the bathroom , looking down the bowl

,feeling very sick and incredibly old

i knew what i put down there, just an hour before,

it wasnt very pretty, diarhoea is a bore.

So the rented accomodation i live in now

is getting to know me, my insides take a bow

Ive put on the most incredible show

toilet humour galore and my insides now glow!

Im taking imodium, motilium they said

its a stop and start gamble, due to the meds

I need some strategy, to begin to cope

cos along with my inerds, ive flushed down my hope.

What will the future hold for someone like me

Do they make a mobile toilet, with a built in TV?

I cant go more than thirty paces from the loo

do they make a harmorhoid cream with built in superglue?

So keep on smiling from the top to the bottom,

Cos inside im gurgling, and feeling quite rotten

So what will my doctor say on thursday morn?

My triglycerides are through the roof, i feel full of scorn

Blood tests for this, blood tests for that

ALT's, LFT's, Haemaglobin some more

CD4, viral loads,my veins are so sore

So here on the toilet, my butt is sat.

Im not after sympathy, or a sideways glance

but just to express, have my cheeks got a chance?

I hope all is well to you heppers on here

cos to me your all very very dear!

hugs
lewis

slightly more cake mix

Were really concerned about you, martin said to me

Its definately the effects of the medication for Hep C

Martin the nurse looked me in the eyes and frowned

Ive been doing this job for ten years, you look drowned.

Your half way through lewis, this is a wake up call

you will not make it, your ready to go up to the roof and have a great fall

Intensley i replied i knew i was there, end of my tether, full of fruit

But if i could i would carry on as long as i could, looking rather cute.

Not having it! you will end up dead, dont look at me like that,

I may be a gay nurse, but im not a total pratt,

With my guise not working ive excepted the fact,

That if i dont start AD's, i will not last.

So i have done them a deal, in my mind at least

A 24 week PCR to find the number of the beast,

I am starting cipramil on monday morn,

my pride says im cheating, full of self scorn

We discussed the decision to keep going or stop,

depending on results, finally a fair kop!

I have slightly more fruit in my cake mix these days,

I can come and go ,but my plum mix stays.

They want me to start an on treatment group

With my experience as a rep, to keep patients in the loop,

Im well up for this, and always welcome change

Just hope the ADs, stop me feeling so strange

hugz lewis

they call her smellie ellie - thats her name dont wear it out

Listen to me, listen to me, won't you shut up and chill?

I want to tell you of this girl i know, who i think is absolutely brill.

Her name it escapes me, but one think i know

she has this heart of gold, but i think shes desperately trying to come in from the rain,

and trying to not catch cold.

I Think as we get older, and realise the road we walk, if there are some aspects we are not happy with,

it helps to have a good cry and talk.

I hope she wont mind me posting this, because she is so dear to my heart,

That when she is feeling rough and insane,

it feels like elliot and E'T as they dance in the same place and part.

So my darling dear, if you read this theres

one think to take

You were the first real friend i made in Brighton

dont be so hard on your self,

we can all make mistakes!

I will love you forever my sweetie,

my parallel universe wife

Smile untill your face hurts,

dance till you steam

and get bolloxed like lisa, its only one life.

See the picture down here, its pretty insane,

like a voice thats not being heard

its title 's the human condition, maybe its not so absurd.

So big hugs my fellow old raver, no more are the free parties of old,

But i know deep down inside me, that my darling believe it - YOUR GOLD!

hugs

lewis

xx

so here it, life goes on before me

I wake from my slumber, a glimpse of sunlight
bottled, and bright, and painful
It hurts my eyes, my soul, my heart
with a throbbing, thats there and dull.

Its another day, this world has bought,
i hear the trains as they rumble past,
wrenching dreams and hopes from those
who have these damn viruses that last.

We have hep c virus, the devil incarnate
to deal with, slay and berate
some may be coinfected with HIV as we wait
on the life stage with fate.

Injections and medications, potions and tinctures galore
What is it that we did in a previous life
i hope we had, fun, frollicks and more.

As i open my eyes to this world out there
people buzzing and whirling and rushed
i am inside my box with its windows
afraid to go out and be pushed.

Were they pushed, did they jump or just fall
from the heavenly stage we're meant to atain,
Were we stabbed in the heart with a virus gun
our soul spreading the pavement with stain.

Ribivirin, interferon, kaletra
and kivexa; poisonous hope
reach deep down inside me,
grab these viral rough cowboys and grope.
Wrench them from my baterred body,
throw me down again
My Tattered soul of beginnings,
my innocence crying in pain

As i open my eyes on this dim light of day, another day begins,
as i push at the walls of my confinement
they begin to push back and gain.

The furniture begins to move inwards, the television begins to fall
Its these damn viral infections inside of me
that form such a tall inpenitrable wall.

So here it is, the state of play, the game on the chess board of life
Are you a rook, a bishop, a king ,queen or a pawn
in need of a very sharp knife.

These black and white squares confuse me,
Which way shall i move, which strategy take?
For its ultimate chess i must play,
where the stakes are our lives or insanity strives
A guess, a direction i must make.

So as i open the curtains and look outside,
the city breathes in and moves, it looks forward, always forward
And i sit in my box far removed.
I have been stolen from time, plucked, placed apart
Waiting for these viral infections to die

It is me, you and them where this fight does begin
This final battle of will
For my heart will not die, will not wither not go
Its the curse of forward motion,
just stay, rest and be still.

hugz

Volkswagon banned tv commercial Bollocks

http://www.youtube.com/watch?v=Ow0a06gsiF4

mmmm! possibly how i feel, i am a gemini!

Bjork - All is Full of Love

mmmmm! possibly how i feel, but this is an amazing video

Rob Dougan - Furious Angels

mmmmm! possibly how i feel.x