ADRIENNE'S HIV BLOG – Hivine's Weblog

HIVINE is written by HIV positive women but still with a sense of humour

Archive for August, 2009

Radio Ga Ga – Speaking from the HAART

valentine wreath 2 for radio hivine

If you want to listen to me speaking on BBC Radio Lancashire about HIV/AIDS, medication as in HAART (Highly Active Antiretroviral Treatment) and the rising statistics in the north west according to the latest figures released today, follow the link –

http://www.bbc.co.uk/lancashire/

Click on the listen again feature – scroll down to Tony Livesey breakfast show Wednesday 26th August and I am on between 8am and 9am.

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Wheel Meet Again

 

picture:dad©adrienneseed

picture:dad©adrienneseed

First things first – congratulations to one of our lovely hiviners who tied the marital knot on Saturday, thus defying all the HIV odds. I’m sure that along with me you will want to wish her every happiness and a wonderful future. She has promised to write her story for hivine to give other positive women hope that they too can find love, even with a negative partner – so watch this space.

Next – congratulations are also most certainly in order and possibly a gold medal from the Queen of hivonia i.e. me, awarded to Willo, or Plinthia as we now call her, for being lifted up on that crane and deposited on the fourth plinth in Trafalgar square to raise awareness about HIV. Maybe also a knighthood or considering the unearthly hour, a dayhood. As it turns out the weather held so she didn’t need to wear a hood of any kind, or her umbrella hat – and aside from getting tangled up in the red and black spotted flamenco pinny I bought her last Christmas, everything went according to plan. You can still catch up with her performance on the one and other website.

The next person in line for a medal, or a hoody, albeit in lycra if his sudden penchant for strutting around in garish colours and skin tight cycling pants is anything to go by, is the gallant Eifion, husband of my cousin Viv of ‘Viv Lives’ survivor of cancer fame, who is about to get on his bike in order to raise awareness and money for another very worthy cause, The Royal British Legion. Eifion, as you can probably guess from his name, is a rather dashing Welsh man and as far as I am aware and judging by the lycra, is the only biker in the village, apart from possibly the odd loose Welsh woman.  

Poppybike_01_(14) (2)

Why are loose women Welsh or otherwise known as the village bike? I suppose the obvious answer is because everyone gets to have a ride on them and the Irish always describe having sex as having a ride don’t they?

When we lived in Ireland my son had a girlfriend called Gronya who we cruelly nicknamed gerronyer bike. Sadly the relationship didn’t last – I wonder why?

I obviously come from a family of bike riders (not I hasten to add loose women) as well as campaigners and survivors of terminal illnesses. That must be where my own compulsion to raise my head above the parapet (as my health advisor describes it) and speak out about HIV comes from. But Eif will be doing more than raising his head; he will be risking permanent damage to his manhood (allegedly) by raising  his bottom, mounting the saddle and riding all the way to Paris, which is notoriously full of loose women. However, he won’t be in any condition to take advantage of this once in a lifetime opportunity, not that he would of course, because by the time he gets there he will probably be suffering from extreme lycra burn, which is even worse I believe than carpet burn.

Some helpful advice for Eif gleaned from other bikers – shave legs in order to go faster, always have some bikearbonate of soda immediately to hand and refrain from wearing the obligatory string of onions round neck as sported by traditional French bikers as these will only serve to slow him down.

But, according to the fearless Eif anything, even long lasting lycra lash is worth furthering his worthy cause. And worthy cause it most certainly is, as every day we have to witness the heartbreaking news that yet another young British soldier has been wiped out in their prime. You may be opposed to our involvement in the ongoing conflict in Afghanistan, but there are times when we depend on our armed forces to fight for freedom and justice and the sake of world peace. Hardly a day goes by when I don’t think about my dad who was a navigator on the old Lancaster Bombers in the Second World War and how brave he was and tell my son that if it wasn’t for his granddad and great granddad, he wouldn’t be enjoying the freedom that he has today – not that he listens to me.

I have recently completed two new paintings of my dad, trying both to re-find myself as an artist (as opposed to an activist) and also to conjure up his spirit and braveness as I face my own daily battle with this bloody disease. When I was first diagnosed seven years ago I was told to think of my highly toxic pills as my ‘little soldiers’ who would help me wipe out the deadly HIV virus that had invaded my body, or at least keep it under control. Some days, even seven years on, I still have trouble getting them down and then they do the cowardly thing by coming straight back up.

picture:dad©adrienneseed

picture:dad©adrienneseed

“Get back on the front line,” I order, “and do your stuff,” I bark at them like an army commandant, although I am the biggest coward in the world and could not face what our brave soldiers are forced to confront on a daily basis. I know that I for one could not live without my own personal battalion of soldiers and unfortunately, in these troubled times, some parts of the world can’t live without ours – so let’s look after them and their families by supporting The Royal British Legion and Lycra Lash Eif in the momentous journey he has before him.

I don’t know, Willo on her plinth, Eif on his bike – and me on the meds. Some things never change.

Suggested songs for Eif to pedal along to as he leaves the White cliffs of Dover far behind him.

“Wheel meet again.”

“Lycra Rolling Stone.”

And not forgetting an old classic song for our recently wedded hiviner –

“On a bicycle made for two.”

And if he is feeling philosophical or about to give up, he can always contemplate this ancient Zen proverb –

“Seek and ye shall find there is nothing to be found, look here is a bike and the wheels go round…….

Unless he gets a puncture of course.

poppy_bike_02

You can sponsor Eif by visiting his website – here is a letter explaining all the details of his mission and how you can make a donation.

 

Dear Relatives, Friends and Hiviners,

I’m doing the Poppy Bike Ride!

poppy_logo

This is Eifion here, writing to you in the hope that you will support my planned big adventure in September 2009

I have a place on The Royal British Legion’s Pedal to Paris ride in September 2009 for which I’m already training hard! 250 cyclists will be taking part and raising funds for the Royal British Legion at the same time. We will start from Greenwich, London on 3rd September and finish 440 km later at the Arc de Triomphe itself on 6th September. It’s a long way, but I’m keen to take up the challenge, especially for such a good cause. Cycling an average of over lOO km per day is just one side of the story -I know that I will be helping men and women who risked their lives in many conflicts, including Northern Ireland, the Gulf War, Bosnia and the current campaigns in Iraq and Afghanistan. The Legion works so hard supporting them, their dependants and families and, like all charities, they need every penny they can raise. This has come into sharp focus recently with the terrible heavy losses and injuries in Afghanistan.

In the months leading up to the event, each cyclist has been asked to raise a minimum of £800 in sponsorship, but I will be trying to beat that. I would greatly appreciate any contribution from you, no matter how small.  Please note that the Chancellor of the Exchequer is very generous to charities when donations are made. If a Gift Aid form is completed, the charity receives about 28% more in tax benefit.

You can donate on line by clicking onto my donations page where there is a Gift Aid facility.

https://www.bmycharity.com/V2/eifion

If you want to learn more about the Poppy  Bike Ride then check out http://www.poppybike.org.uk

If you want to know more about the work of the Royal British Legion www.britishlegion.org.uk

logo

 

Take a look at my own website which has sparked my interest in the work of the Legion. It’s a Virtual War Memorial for Northop Parish where I live.  www.northopwm.com

Thank you very much for taking the trouble to read my letter and I hope that you feel that you are able to support this excellent cause.  Please pass on my details to anyone else you think might wish to help.

 Yours sincerely

 Eifion Williams

One And Other

missc&thewindbags©willowilliams

missc&thewindbags©willowilliams

Hear ye, Oh hear ye – the time has come for the town crier or should I say the web crier to make the grand announcement that Willo, best friend, artist, neighbour and honorary member of our local HIV support group is about to mount the plinth as part of the One and Other project, a live artwork by sculptor Antony Gormley where 2400 participants representing every region of the UK each get to spend an hour alone to do their thing on the empty plinth in Trafalgar Square.

When the project was first announced I also applied for a place, thinking it would be an excellent opportunity to raise awareness about HIV, but knowing my luck for such things and in the postcode lottery I was not selected. Never mind, brave Willo is going to do it for us and is also going to give my book, “The Spider and the Fly,” which will be out in November in time for this World AIDS day, a hefty plug.

I must say, as the time draws nigh, I don’t really envy her the terrifying task she has before her and as ever I admire her courage in facing up to life’s challenges of which she has survived many, the worst of which was losing her beloved partner Paul or Pavlito as I always called him, in what should have been the prime of their years. However, I am sure he will be with her in spirit and looking down on her with immense pride. Anyway, she is taking him up on the plinth with her in the form of the amazing plaster sculpture she made in his memory and she is also going to make another plaster live on the web cam so she is hoping it won’t rain. In the event that it does, she has purchased a magnificent striped umbrella hat, so it will be worth logging on just to see her wearing that.

so tenderly he loved me - willo williams

so tenderly he loved me - willo williams

 

Willo intends to talk whilst she is busy working about the many charities she supports and about her own cancer, which, with her indomitable spirit she survived and if she has (in her words) the nerve, her colostomy bag, in order to inspire other cancer sufferers and give them hope. The header painting for this blog which is by Willo and entitled ‘Miss Colostomy and the Windbags’ is about celebrities such as Billy Conelly and Ruby Wax making jokes about colostomy bags in their repertoire.

The Jarman Centre in Blackburn has lent Willo the huge Red Ribbon which is dragged out every year on World AIDS Day at Blackburn Cathedral and has also donated the enormous bag of multi-coloured and multi-flavoured condoms she is going to toss to the crowd. How big the crowd will be is debateable because unfortunately she has the 7am to 8am time slot, but the footage will be shown on the Sky Arts channel so her message of safe sex will hopefully get across to the nation.

So hear ye, hear ye, calling all positive people as well as people who aren’t – the brave and fearless Willo is supporting us so we must also support her by logging on to  the one and other website.

Day – Wednesday 12th August

Time – 7am to 8am – yes, I know it’s very early in the morning, but it will be worth getting up for if only to see what Willo (who is known for her eccentric dress sense) is wearing – aside from the umbrella hat!

Please visit the One and Other website in advance where you can pledge your support and send her your messages of encouragement.

From hivine – thanks Willo – Willo the Wisp you are definitely not! Willo the Wonderful more like.

Willo – Biography for One and Other

Region: North West

  • clumsy
  • eccentric
  • dreamer

I will be on the 4th plinth during week 6

About me

At first I thought the project would be an amazing forum to raise the profile of the groups and charities that interest me, but since being selected, my friends feel I should use it as a platform for myself. I am still undecided about this.

As a long-term survivor of various forms of cancer (including secondary bone cancer) I thought I might promote Christie Hospital, where I received most of my treatments over several years. I’m also a supporter of the Colostomy Association, Scope, YMCA, the Big Issue, NSPCC, Childline, British Heart Foundation (my partner having died suddenly of heart related illness on New Years Day 2007), Leukaemia Research (my ‘ex’-nephew died of leukaemia at the age of 14 and I have a friend currently undergoing treatment), various third world charities and a local Aids/HIV support group. Several friends are infected with the virus (one of whom has written her moving yet witty autobiography – you can read a few chapters of it in advance of publication at: www.hivine.wordpress.com or www.hivine.com) and some have died of Aids related illnesses. The general public seems to have little or no idea of how the virus is now spreading through the heterosexual community – with many of the newly diagnosed being teenagers, so along with other members of the group, I am anxious to promote awareness.

I currently have my 91 year old mother living with me who has a mixture of dementia and Alzheimer’s and my late father also suffered from dementia and prostate cancer, so they are other areas that concern me.

My first grandchild was born at 27 weeks in Queen Mary Hospital, Hong Kong. He weighed less than 800 grams and his survival was in the balance for many months. He is now 13 and I am indebted to that hospital and neonatal care. I first met him when he was 6 months old, on oxygen and still too weak to lift his head by himself. I did an oil painting of him with his mum and called it Miracle Boy.

I have a background in art and have at various times, managed to make money from it, not least when I was living in Zambia. Alas not so in recent years and currently it is nothing more than a hobby. With being a full-time carer I have little spare time (nor inclination since the loss of my partner) and that is mostly used up on DIY in my tiny old house bursting at the seams with all sorts of junk (that might just come in useful) and my mother’s furniture and effects.

I have two children, five grandchildren, various step-children and their offspring that I regard as my own. Sadly none of them live close by, so I don’t often see them.

Africa had a profound effect on me and I feel privileged to have lived there for some 17 years. Not without its ‘hairy’ moments though, like being falsely arrested twice, for being a spy (when I was just out sketching on assignments for the mining company).

I make time for a couple of activities – tai chi and salsa, both of them being my time to chill-out from the stresses of daily life and the latter being a huge amount of fun.

For many years I have been an admirer of Antony Gormley’s work and have seen it in various settings, but none so impressive as The Angel of The North which I spotted by accident on a train journey from Edinburgh. I should have been travelling via the west coast, but for some reason we were diverted. Admiring the view out to sea on the east coast I suddenly spotted it in all its magnificence. It was breathtaking and a sight I shall never forget.

Like so many of the participants I never expected to be selected by the computer for this project, so I am still rather overwhelmed – and terrified! However, I consider it an honour and I hope I can make the most of my hour and not flunk it!

7 July 09: It’s now six days since I heard I had been selected and I am beginning to formulate a plan, but much of it will be dependant on the weather. I haven’t yet timed this, but thought it might be possible to make a cast whilst up there on the plinth, though this may not be acceptable to the production team. As it is curing I could show some of my 2D work in print/repro form (I have been de-cluttering of late by donating them to the British Heart Foundation). If there are enough people passing by on their way to work I could launch the prints down to them. On the back of the prints could be a list of causes I am interested in and if the recipient was willing he/she could send a donation to one of the causes. I have just been watching the live webstream and seen several people passing by, so it may work. If there is a deluge or howling gale then this plan will fail, so I’ll just have to risk embarrassing my family by doing some dancing and maybe tai-chi. I’ve promised them I won’t sing!!!

Willo and me singing in choir

Willo and me singing in choir

Miss Piggy

miss piggy square


Well, was it or wasn’t it?

Decided to take matters in own hands and do the NHS online test to find out. First had to clarify if patient was suffering from any of the following conditions – difficult to wake, floppy, limp, can’t finish a sentence, grunting. Grunting? I’m surprised they didn’t ask has patient suddenly turned pink and sprouted a spirally tail. Clicked no, even though on a bad day any one of these conditions, apart from a spirally tail, could apply to me, especially the difficult to wake bit and even the grunting if I am displeased with something, which is quite often the case these days, especially with all these new rules relating to HIV patients no longer being able to refer to their specialist about anything that is not directly HIV related – which is absolute tonterias as the Spanish would say, as most of our ailments are.

The online diagnosis continues – does the patient have at least two of the following flu like symptoms – sore throat, yes, cough, diahorrea, muscle and joint aches, temperature – yes yes yes yes – continue.

Now please type in name age address and telephone number.
Oh no, was yet another scam aimed at extracting personal details or that pesky bloke Eon again who keeps asking me if I fancy a change – continue.

Can patient touch chin to chest or have clusters of tiny purple spots – yes, patient can touch chest easy peasy with double chin and turkey neck and yes, does have magnificent purple rash under bosoms caused by meds, or at least that’s what patient thought it was – clicked no so as not to confuse the issue.

An antiviral treatment is not recommended for this patient.

Huh!

Although good to hear, still wasn’t entirely convinced. I know what you are thinking, that like the rest of the nation I have become obsessed with Swine Flu and am probably a hypochondriac. A hypochondriac – moi? But like Miss Piggy I was not impressed with their diagnosis. The interrogation wasn’t thorough enough as far as I was concerned, but they did offer a final note of advice.

As well as showing flu symptoms the patient requires further assessment.

See, da – da – as Miss Piggy would say with a head butt and a firm nudge with her dimpled elbow, I knew it.

Print out the result was ordered and show to doctor

No, this cannot do, have no ink in printer and cannot afford new cartridge, so not an option. Felt need to investigate further so clicked on sickofswineflu.com/online test, but that was some rubbish about not getting confused with chimneys. As if – confused moi?

A more serious source of information revealed that the symptoms of Swine Flu are when flu like symptoms improve but then return with fever and worse cough. Well isn’t that what had happened to me? Off I went back to docs.

Well is it or isn’t it?

“Chest infection,” doc pronounces with forced smile – is very wary of me now after last visit when head to head confrontation took place and doc and Miss Piggy a.k.a. moi nearly came to blows over his statement that HIV was like any other chronic illness.
“What about the associated HIV stigma which prevents us from getting jobs, mortgages, travelling to America, finding a partner, having children to name but a few?”
“People with other chronic illnesses such as rheumatoid arthritis also suffer from stigma,” doc sticks to medical guns.
“Yes, but (didn’t actually say this in these exact terms said it more politely) their disease doesn’t stop people from shagging them does it?” Miss Piggy can be quite foul mouthed at times. “And they don’t have to take toxic medicine every day which rots bones and changes body shape not to mention causes severe depression.”
Doc told me was contributing to stigma by talking in this manner and informed me had people waiting in surgery – in other words was asked to leave. Flounced out like Miss Piggy in high dudgeon shedding tears of heartfelt frustration that doc couldn’t comprehend ‘one’s’ situation, which is not good news as positive people now have to depend on family doctors and not HIV specialists for ongoing conditions.

This time doc trying to be more understanding and diplomatic whilst studiously avoiding encendiary subject of HIV, examines chest and prescribes more antibiotics, stronger ones.
“Last ones obviously didn’t work,” I mutter wryly.
“They were for ‘tricky something or other’” he says somewhat defensively.
Why didn’t he just give me the right ones in the first place ‘one’ wonders? My HIV specialist who knows ‘one’s’ medical history and ‘one’s’ particular weakness where chest infections are concerned would have done.

“How do you actually know it’s not swine flu then?” I asked him on way out, “Is it the question relating to purple rash and touching chest with chin?”
“No that’s for meningitis,” he shakes medical head.
“Well apart from those two symptoms on the NHS online test I have or have had all the other things.”
“Oh it’s all jolly good fun, isn’t it?” he chuckles.

Think doc has seriously lost plot, maybe has contracted swine flu himself or mad doctor’s disease. I thought doctors were supposed to know what they were doing. Aren’t they supposed to give you a swab test or something, otherwise how will they ever know if it was swine flu or not?

A friend of mine was told that her grandson might have swine flu because he had a very high temperature, sore throat etc. Could well be their doctor advised so keep him isolated just in case. Turns out he didn’t have it, or at least he is now recovering from whatever it was, but how do they know that it wasn’t swine flu if there is no direct test?

No wonder the country is a in a total panic. As if life isn’t complicated enough without pigs putting their infected trotters in it – and I don’t know about you, but I definitely don’t need anymore complications in my life. Living with the virus I’ve already got is quite enough thank you very much without contracting another one – especially from a pig. I tend to plump for the easy options these days and to quote my heroine Miss Piggy, my ultimate ambition is to live a simple life with the frog I love. I just have to find one first – trouble is thanks to HIV, no one, not even a frog and least of all a prince would want to kiss me.

 

Miss-Piggy-5