ADRIENNE'S HIV BLOG – Hivine's Weblog

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

Archive for HIV news and updates

Crash in the Attic

I have never been up in my attic in my entire life, only as far as to poke stuff through the hatch, but I decided whilst Luis was here it would be a good idea to convert it. I wish I’d never bothered. I should have left well alone.

Our first step was to invest in a loft ladder, but with my vertigo and ‘dizzy head’ I could only surmount the first two rungs so I had to leave Luis up to his own devices. Being a macho Spanish man he had his own ideas on how to go about it, which involved, of course, not listening to me (nothing new there) although I did try to warn him about the wiring. Maybe he didn’t understand my Spanish – technical terms are beyond me tending to take the form of hand movements – and he thought I meant hammer through the wires.

He was grouchy and short tempered to start with on having to vacate the sofa in favour of the dark and dusty attic, but once he’d started he seemed to get into it and the banging and crashing over our heads went on all afternoon. His dusty bottom finally emerged back down the ladder as dusk was falling, pleased with the days labour (that sounds like his bottom was pleased, which it may well have been, however I didn’t stop to ask it). But when he turned on the bathroom light to have a shower there was no light.

“Adriana porque no hay luz?” he growled menacingly, as it if was my fault. I directed him to the fuse box and pointed at the trip switch, but when he clicked it back into position a huge blue flash lit up his grimy jowls. He was right we didn’t have any luz and on top of that the smell of burning rubber was now pervading the air. I immediately started to panic. Would we all die in our beds that night because of an electrical short causing the house to catch fire whilst we slept?

Luis wandered up and down in his dressing gown muttering in Spanish and clutching the torch, his toothless jaws lit up like Wooky hole. For those who don’t know what that is it’s a mysterious cave with an unfathomable blue lake down south somewhere.

What next I asked myself. First there was the saga of the new dishwasher, which finally after having every conceivable part repaired by a selection of hairy bottomed Comet engineers was finally condemned and replaced. Then there was the bloody boiler which was declared at risk by the National Grid and although it has now been supposedly fixed at huge expense by a gas safe engineer is making all kinds of whooshing, whirring clanging noises (even when its off) which is most unsettling. Now all the upstairs lights have fused and I will have to find an electrician at yet more expense – out comes the credit card again.

And if all that wasn’t bad enough my Tefyl Actifry conked out, so no more chips. I can just about cope with the clonking boiler and showering by torchlight – but no chips? A chip free zone – what to do in unnatural disasters such as these. Keep calm of course and meditate or lose myself in my crossword. I have taken to doing the Daily Mirror crossword to exercise my brain – not exactly the Times or the Guardian I know, but I derive a huge sense of satisfaction if I can complete it. Trouble is there are always a couple of words which completely defy me, which means I have to keep on buying the scandal filled rag to find out the answers. Occasionally there are articles of interest within however, such as Dr Miriam Stopper’s ‘Health Focus’ where by coincidence she has been focusing on the benefits of meditation. What’s more she mentioned HIV not once but twice. Unlike HIV which is hell bent on killing you off, meditation can apparently help you live longer and the practice can add years to your life.

“Reported effects of meditation include lowering blood pressure, healing psoriasis, boosting immunity in those who are vaccinated or have cancer, preventing relapse into recurrent depression, plus slowing down the progression of HIV.”

Well I never – does that mean we no longer have to take medication? Meditate instead of medicate?

“The two kinds of meditation that have been studied are mindfulness medication where you become acutely aware of your thoughts and surroundings and compassion meditation where you focus on feelings of love and affection for others. Both of these cut down on the stress hormone cortisol.”

Well, I can hardly focus on my surroundings can I with everything conking out all around me – and as for focusing on feelings of love and affection for others, to be honest I’m not really keen on others as in the men folk currently residing in my household, i.e. Luis and my son, they are both grump pots. So that just leaves the dog, Lady Doodle so I will have to focus on her.

“Just doing something we enjoy and love – be it meditating, gardening, listening to music or painting – will go a long way to protect us from stress and even help us live longer. Writing an emotional diary can help patients delay the progress of HIV.”

Does writing this blog count as an emotional diary I wonder Dr Miriam? As I stood there gazing sorrowfully at my defunct Tefyl Actifry and wondering if I should hit the credit card yet again, there was a loud banging on the door.

“Bugger off whoever you are,” I cursed bad temperedly. But the knocking persisted so uncharacteristically I opened the door, usually I just ignore it in case it’s the bailiffs!! A delivery man was standing there with a big cardboard box from Amazon at his feet.

“I didn’t order anything from Amazon,” I told him, about to shut the door in his face.

“Are you Adrienne Seed, residing at this address?” he asked, “because if you are, it’s definitely for you.”

Still thinking it was some kind of mistake I signed for the box and took it inside. “What could it be?” I asked Lady Doodle who was excitedly sniffing the cardboard hoping no doubt it was a giant box of pigs ears. I carefully slit open the lid with the kitchen knife and there it sat gleaming before my eyes – a brand spanking new Tefyl Actifry. There was a note slipped inside the packaging – love from Doodle the chip fairy.

So you see never stop believing in fairies, especially if you have a sister like mine. I may have had a crash followed by a flash (opposed to finding some cash) in my attic, but at least I’ve got a chip fairy – not a lot of people can say that.

HIV TRAVEL BAN LIFTED

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The United States Government today announced the lifting of HIV related entry, stay and residency restrictions. The ruling confirmed that HIV infection will be officially removed from the definition of communicable diseases of public health significance as of January 1st, 2010. The Deutsche AIDS-Hilfe (DAH), European AIDS Treatment Group (EATG) and the Global Network of People living with HIV (GNP+) congratulate the United States Government on fulfilling its promise and completing the legal procedure that was started by former President Bush on World AIDS Day 2007.

“This is a great victory for the fight against the worldwide discrimination of people living with HIV”, says Peter Wiessner from the Deutsche AIDS-Hilfe: “I remember times where we never thought that this would happen. This is an emotional moment and it feels a bit like the fall of the Berlin wall.”

 

DAH, EATG and GNP+ have long argued that HIV specific restrictions on entry, stay and residence are not only stigmatizing and discriminatory, but are also ineffective for public health protection and prevention purposes.

 

“Lifting the ban is a great step forward in the battle against stigma and discrimination against people living with HIV,” stated Kevin Moody, International Coordinator and CEO of GNP

“This groundbreaking move is the result of joint advocacy efforts by countless activists in the United States and around the globe over many years,” reported David Haerry of the EATG. “It is a strong message to other countries maintaining stigmatizing restrictions today, such as Russia, China, Australia and Canada.”

 

DAH, EATG and GNP+ commend the United States Government for its commitment to lead diplomatic efforts to lift HIV specific entry, stay and residency restrictions in other countries. There are multiple countries that could be spurred to deliver on their commitments: For example, China never delivered on the promises made in 2007 to the Global Fund to Fight AIDS, TB and Malaria to lift immigration restrictions[i] and both Namibia and South Korea have not yet fulfilled their promise to review their restrictive legislations[ii].

 

 

“Let’s not forget that even after the United States decision, we count more than 60 countries having stigmatizing entry or residency restrictions, including some in Western and Eastern Europe,” Peter Wiessner said: “27 countries deport people on the grounds of having an HIV infection.”

 

DAH, EATG and GNP+ want to recognize the enormous efforts by activists and diplomats inside the United States as well as outside to change these legislations. Precious support was provided by Congress woman Barbara Lee (California) and Senator Kerry. Special mention should be made of the Government of Norway and UNAIDS , that jointly led the International Task Team on HIV-related Travel Restrictions.

For more information contact:

Deutsche AIDS Hilfe: Peter Wiessner, +49-221-80 14 96 36 (German, English)

 

European AIDS Treatment Group: David Hans U. Haerry, +41-31-352 3210, david@eatg.org (French, English, German, Spanish)

Global Network of People living with HIV: Martin Stolk, Communications Officer, +31-6-1991 2406, mstolk@gnpplus.net (Dutch, English)

 

The Deutsche AIDS Hilfe and EATG collaborate with the International AIDS Society IAS on the Global Database of HIV-specific Travel Restrictions http://www.hivtravel.org 

 

DAH, EATG and GNP+ have been regular partners advocating against HIV related discriminatory measures such as travel restrictions.

Swine Flu and HIV Alert

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If anyone with HIV is worried about swine flu, please read this article below. It’s taken from Poz magazine and was sent to me by Fiona from ICW.

April 27, 2009

Swine Flu and You by Tim Horn

The threat of a swine flu epidemic in the United States has many people living with HIV concerned about their health and safety. POZ and AIDSmeds check in with WHO and the CDC for the latest. In short: While there are reasons to be cautious, there’s no reason to panic.

What is swine flu?

Swine flu is a respiratory disease common among pigs. Though people are not usually susceptible to swine flu, animal-to-human transmission has been documented, notably among farmers working closely with pigs. What’s unique about the particular strain now under surveillance-dubbed swine influenza type A/H1N1-is its ability to spread from person to person.

Is swine flu deadly?

All types of influenza that cause disease in humans can be deadly-approximately 200,000 people are hospitalized and 36,000 people die from flu-related complications every year in the United States.

There is no reason to believe that the swine flu being reported is any more deadly than the regular seasonal flu. Of the 40 confirmed cases of swine flu in humans in the United States as of April 27, none have resulted in death. In fact, according to the Centers for Disease Control and Prevention (CDC), all cases reported in the United States thus far were associated with mild symptoms of illness, with only one patient requiring brief hospital care.

What is of concern to public health experts is the fact that the disease is caused by an animal influenza virus that doesn’t normally infect humans, and the fact that the virus has been documented in a number of North American communities. Plus, many of those who died of influenza-like illness in Mexico appeared to be otherwise healthy young adults; in contrast, seasonal influenza tends to be most serious among the very young, the very old and people with other chronic health conditions.

Is swine flu a threat to people living with HIV?

People living with HIV-as well as those with other chronic conditions, such as heart disease, asthma and diabetes-are believed to face an increased risk of serious influenza-related symptoms. According to the CDC, there is often a spike in the number of heart- and lung-related hospitalizations among people living with HIV during the winter influenza season as opposed to other times of the year. Studies also indicate that influenza symptoms might be prolonged and the risks of influenza-related complications-including death-are higher for certain HIV-positive people.

It is not clear that this strain of swine flu poses any more or less of a risk to people living with HIV. One theory: Given that, at least in Mexico, swine flu mimics what was seen during the 1918 influenza pandemic-it appears most serious among people between 18 and 35 years of age; those with healthy immune systems that become hyperactive in response to the virus and causes serious respiratory inflammation and disease-and may be less of a threat to those with compromised immune systems, such as people living with HIV. Unfortunately, it is not clear if this theory will hold up, given that many HIV-positive people are responding well to antiretroviral treatment, compounded by the possibility that a hyperactive immune response to HIV, not the virus itself, is responsible for HIV disease progression and a heightened risk of non-AIDS related health problems.

To help prevent seasonal flu, an annual vaccine is recommended for people with HIV to lower the risk of infection or serious disease if infection does occur. Unfortunately, a vaccine has not yet been developed against swine influenza A/H1N1. But people living with HIV can take steps to prevent infection.

How can I protect myself?

The CDC and other public health experts list fairly simple ways to prevent the spread of swine influenza A/H1N1. These include:

* Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
* Wash your hands often with soap and water, especially after you cough or sneeze. Alcohol-based hand cleaners are also effective.
* Avoid touching your eyes, nose or mouth. Germs spread this way.
* Try to avoid close contact with sick people.
* Very little is known about the benefits of wearing face masks to help control the spread of flu. Whenever possible, instead of relying on face masks, try avoiding close contact and crowded conditions-particularly if swine flu reaches pandemic status.
* No evidence shows that swine flu can be transmitted through food. Eating properly handled pork-cooked to an internal temperature of 160 degrees-is safe.
* If you come down with influenza-like symptoms, contact your doctor’s office immediately and stay home from work or school.

What about medications against swine flu?

Good news. Initial tests suggest that swine influenza A/H1N1 is sensitive to two widely available antiviral medications: Relenza (zanamivir) and Tamiflu (oseltamivir). The flu medications Symmetrel (amantadine) and Flumadine (rimantadine) are not effective against this particular strain of influenza.

These medications work much like antiretrovirals do against HIV-they prevent the influenza virus from reproducing in the body. If someone becomes ill with influenza, including swine flu, Relenza or Tamiflu can minimize symptoms and speed up recovery. They may also prevent serious flu complications. For treatment, these medications work best if started soon after getting sick-within two days of symptoms-so call your doctor immediately if you experience flu-related signs.

According to the CDC, people at high risk of serious influenza-related complications-including people living with HIV/AIDS-can take Relenza or Tamiflu if they are likely to be exposed to other people with influenza. For example, if a family or household member is diagnosed with influenza, the exposed person with HIV/AIDS should take either drug for seven days. Relenza or Tamiflu prescriptions might also be a good idea for HIV-positive people who live in institutions experiencing an influenza outbreak.

POZ and AIDSmeds will continue to report on swine flu as it relates to people living with HIV-stay tuned for more information as it becomes available.

FEEL THE FEAR AND DO IT ANYWAY

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I learnt a valuable lesson today and that is, when you are terrified of doing something and you really don’t want to do it, like going to the dentist for example, you should go ahead and make yourself do it anyway – as recommended by the much thumbed and modern day bible entitled – “Feel the Fear and do it Anyway.”

And that’s exactly what I did today. I felt the fear and did it anyway and actually kept my appointment with the dentist, instead of making some feeble excuse and cancelling it at the last minute, as is my usual practice. This was only down to necessity it has to be said, because half a tooth fell out and vanity prevailed. I don’t want my face to capsize or lipodostrophize anymore than is absolutely necessary due to lack of molars.

Visiting the dentist for most people is a traumatic experience in the first place, but more so for a person who is HIV positive, because for obvious reasons your status has to be declared before the dentist decides whether or not to treat you – and they are selective enough as it is nowadays. You will then be allotted the last appointment of the day in order that your tainted blood does not contaminate anyone elses. Although this is fair enough, and heaven for-fend that you should inadvertently infect anyone else, it still makes you feel like a leper. And the receptionist, who will have access to your notes, tends to look at you as if you are one.

Before I came out of the HIV closet, I always felt uncomfortable and conspicuous whilst hovering furtively in the waiting room, conscious of the fact that darkness was drawing in, the receptionist impatiently waiting to shut up shop and the cleaner lurking with a surly look on her face in the wings.  But no more. Tonight, I didn’t care.

Because I haven’t been for so long, I had to renew my details and I noted that there was actually a box to tick if you were HIV positive, which I boldly ticked with something akin to rebellious pride. The fact that there was now a box to tick said a lot to me, because it means, as recent statistics prove, that there are now more and more people who have contracted HIV.

Mind you, there was also another box to tick if you smoked or chewed tobacco. Apart from Chewbaccy or whatever he was called in Star Wars (and I’m not sure he lived up to his name), I have never actually witnessed anyone chewing on a wad of Golden Virginia or Cutter’s Choice – Nicorettes of course, all the newly reformed smokers are chomping away on those. However, I have to admit, I am partial to the odd Camel Light, but because of its pungent smell, which is often likened to the aroma of fresh Camel dung,  I have never been tempted to chew one.

As I was leaving the dentist’s surgery, I felt a tug on my sleeve and there was the lovely smiling face of our erstwhile HIV social worker, who was a great support to me when I was newly diagnosed and also to many others, but whose services sadly were deemed no longer necessary by the NHS. We, the people who she helped beyond the call of duty, beg to differ. We are lost without her and wish she would be reinstated. Anyway, she gave me a great big hug and told me that she had heard me and Cath speaking out on the radio and she was so proud of us. I left with a feeling of immense joy, mainly through seeing her and knowing that her hug was truly genuine – a simple hug means so much to people with HIV – but also because I had conquered my fear of going to the dentist.

Mind you, it turned out it was only for a check up and to arrange another appointment for the actual work to be done. I still have to suffer the pain and indignity of the actual filling, but that will be another story.

SMARTIE PANTS

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My broadband connection has been down since last night whilst they messed around moving everyone’s emails and I was totally traumatized. I felt like my right arm had been cut off as well as my left one, which is still very sore after the flu jab. A close friend of mine won’t have the flu jab as she’s convinced it’s a goverment plot to kill off all the old and ailing population.

She might have a point there.

There has always been the rumour that the AIDS virus was deliberately administered to homosexual men in America in the form of injections to protect them against hepatitus, but in reality it was a nazi-type plot to wipe them all out.

You never know.

There are all kinds of theories as to where the AIDS virus originally stems from and why it has come into existence in the first place. I only wish they would hurry up and find a cure, but I suppose there is too much money to be made on the pharmacutial side.

Talking of pharmacuticals, I’ve put my new pills, as directed, in the fridge next to that horrible replacement for butter which is supposed to bring my cholestrol down, waiting for the dreaded day when I have to change my medication. The fact that I will now have to take four pills instead of two is psychologically depressing and will be a constant times four daily reminder, as I try to swallow the things, that I still have this deadly virus and that I will have to live with it forever. On the other hand, at least they are not blue. My other pills were blue and we all know that colourants in food, which presumably means pills as well, can cause behavioural problems and hyperactivity in children and for that reason you should never let them eat the blue Smarties.

There you go, I have studiously refrained over the years from eating blue Smarties and look what happened. If they don’t get you one way they’ll get you another. If only I’d eaten more Smarties maybe I wouldn’t be having trouble with my M&S knickers falling down. Maybe all the blue additive I’ve consumed over the years is the reason for my recent hyperactivity in regard to this website. God knows what I’ll get when I switch to these new pills. Apparently, they are the ones least likely to cause lipidostrophy, but on the other hand they can give you yellow eyes and kidney stones. There’s not much in it then, is there? It’s either a humped back or yellow eyes.

I thought about it for a brief moment when I was presented with the options, then I went for the yellow eyes. Well, wouldn’t you? I am, of course, extremely lucky living in this country to have access to any kind of medication and I don’t mean to make light of the subject. My heart bleeds for the women and children in other countries who are denied medication and have no access to the life prolonging HIV drugs and are forced to stand by and watch their families die from AIDS.

What a relief it is to be back on line. It’s strange, I am talking away to people I don’t even know. Life has become very computer orientated, but that in turn is also a good thing. It is enabling me to pass my message on to anyone who cares to listen, that there is still life living with HIV only not in the form that you once knew it. And good things can come out of it. For example, I have made some amazing new friends. Catherine of course is one. Her incredible story of survival and her wit and determination have inspired me beyond words. In fact, without her I would never have had the confidence to speak out on the radio and neither would I be sitting here writing this. If we carry on doing interviews and radio broadcasts together, we well may become the Hinge and Bracket of HIV – as opposed to the Two Fat Ladies, Hairy Bikers or Two Ronnies.

Jennifer Saunders and Dawn French of course would be much more desireable.

HIDING IN THE SHADOWS

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I have just returned from the GUM clinic after having my flu jab and picking up my new cocktail of anti-retroviral drugs, some of which have to be kept in the fridge. The fact that they have to be preserved is making me nervous, as presumably it means they have a shelf  life and can go off. 

What if we have a power cut?

A whole new set of concerns is now added to my worry list and set to plague me. I don’t actually have to begin the new drug regime for several weeks, that is until I have used up my stock of Tresivir, my old and trusted friend, which although has served me well over the last three years, in that I’m still here to tell the tale, has possibly been the cause of my body fat starting to move itself around to undesireable places, such as my tummy and my bosoms, leaving the rest of me noticeably bereft.

This could be disastrous where my facial features are concerned, as being a woman of a certain age, I need all the padding I can get. As for my poor once shapely child bearing hips, they seem to have almost disappeared and I now have what can only be described as little old ladies legs attached to them.

Well, look on the bright side I suppose, at least they’ve still got some hip bones left to attach to.  My faithful stock of M&S knickers, guaranteed to last a lifetime, now have a tendency to lose their grip and  their slithering capacity is not down to faulty elastic, as I would like to convince myself. 

Some of us no doubt, might be grateful for added the dimensions to their bust-line, but not me. Firstly, I had to go out and by some new bras, which involved the indignity of having my bosoms measured by a young girl without any, only to discover to my horror that ‘madam’ was now a double ‘D’ cup size. My new bras with their capacity to lift and seperate make me look like someone out of a science fiction movie.

Talking of cups, crockery and flying saucers and also kitchen utensils, the Spanish word for bra is very similar to their word for saucepan, which can all add to the confusion if you are forced to buy a new bra whilst on holiday, so beware. You certainly wouldn’t want to end up with something stainless steel or non-stick, although the non-stick aspect might come in useful I suppose, if it’s very hot. A teflon coated Playtex or wonderbra perhaps?

Because I was justifiably nervous about changing my medication, I was taken aside into a private room for an informative chat in order to put my mind at rest, by my lovely counsellor, who unfortunately, due to all the complicated confidentiality issues surrounding HIV will have to remain nameless. Counselling is only one of her many and varied roles at the GUM clinic I hasten to add, as she seems to do an awful lot and more besides, and I for one would have been lost without her over the years .

She was thrilled to hear about my radio broadcast on BBC Radio 2 and the setting up of the hivine website and how many people had already visited it. I think it was one thousand five hundred the last time I looked at the blog stats, which I have to admit, I tend to do quite frequently, because I can’t believe so many people are actually looking at it. Working with HIV patients, as she does, and experiencing first hand how people, especially women, are forced to live in fear and hiding due to the stigma and hype surrounding this anti-social disease, she has always wanted someone to speak out in order to raise awareness and help others, so she was really proud of me. But as we talked, I realised that it was not only ‘us’ the patients who were forced to hide and live as she described it, ‘in the shadows’. She is also shrouded in secrecy and works as an ‘invisble’ practitioner, carrying the weight of all our stories on her shoulders and supporting us like a surgical stocking. She cannot openly acknowledge an HIV patient in public for fear of the association of her job – in that people might know what her job is  and make assumptions. For that reason, neither can she really be truly acknowledged for all the good work she does, although typically of her, she says she isn’t bothered about that. But if she is reading this, she knows who she is.

Selfishly, I hadn’t really thought about that aspect and had only really considered my own feelings in regard to confidentiality, never really considering the weight family and friends also had to carry in respect to guarding confidentiality. For example, by confiding in someone and then asking them not to tell anyone else, means they also have to lie – and more importantly live a lie. It’s so sad that things have to be this way and I for one am determined to try to do something about it, and by responding to this blog, you are already helping me, as well as others.

Talking of ‘hiding in the shadows’ conjures up for me a fond memory of my mum, two days after I’d given birth to my son Ben by caesarian section. He was a huge baby, ten pounds and eleven ounces to be precise. I don’t think the non existant hips could have managed that in the sorry state they are now. Anyway, I was practising walking along the corridor with my drip to hasten my escape from the hell which was the maternity unit in those days. I’d been denied food because the sadistic nurse had her mind set on giving me an enema and I was starving. All of a sudden, I heard an urgent hiss from out of the shadows as I shuffled along and there was my mum, lurking in a darkened corridor, hiding a flask of cold milk and an egg and cress sandwich under her raincoat. Which brings to mind a song by the Rolling Stones –

‘Have you seen your mother baby, standing in the shadows?’

You know, it’s so nice to have someone to talk to. I hope you will continue to post me comments back. There is a wide range of topics for you to respond to in this post, for example –

Wonderbras, big babies, fridges, power cuts, egg and cress sandwiches, saucepans, hip replacements, medication and of course the dreaded lipidostrophy – so please do.

POISON IVY

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Thank you all, once again, for taking the time and trouble to respond to this blog. The response has been incredible and I am amazed, after looking at the stats, how many people have actually visited the site and are continuing to do so. Many of your kind comments and messages of support have really touched my heart and more importantly convinced me of the need to carry on trying to get my message accross. The message being that there is still life living with HIV and it is not necessarily a death sentence anymore, even though as I said on the radio, it is now a life sentence rather than a death sentence.

So for those of us who are doing time for a crime we did not commit, or unknowingly committed by the simple act of having a sexual relationship with someone we loved (or didn’t love for that matter), try not to be judged or judge yourself, because it could happen to anyone – and I mean anyone.

Don’t give up or give in, feel isolated or hide yourself away in a prison cell of guilt and shame. There is no blame on the behalf of anyone, unless of course they deliberately passed the virus on, which is a hard concept to believe.

People are asking me about something I said during the radio broadcast, which is what were the typical symptoms of HIV the various doctors, apart from the homeopathic doctor I consulted, did not pick up on.  I don’t want to send anyone into a panic, because these symptoms are not necessarily HIV related, but mine were as follows – strange unaccounted for fevers, peculiar spots all over my body like tiny bullet holes, an itchy rash which felt like millions of centipedes performing ‘The River Dance’ under my skin, the dreaded shingles, pneumonia, intermittent loss of voice and the most annoying of all, persistent oral thrush.

I always thought of Thrush, aside from the obvious reference to a small bird, as a woman’s complaint, usually located somewhere in our nether regions, but apparently babies often get it in their mouths and so do people infected with HIV. 

Talking of thrush and itchy things, and leading on from my last post entitled ‘The Graveyard Shift’ in regard to rabbits, as in our furry friends and not me rabbiting on which I tend (and am about) to do, the following day my son Ben found a scratch card in his Nintendo magazine and although we have both sworn never to fall into the same old trap of making that expensive phone call to find out what we hadn’t won, he went ahead and scratched to reveal three rabbits, the top prize and a possible million pounds, BMW etc. The lowest prize we could possibly win was a holiday to Majorca.

I have unfortunately inherited, or been saddled with, my mother’s ingrained sense of superstition, which ranges from the throwing of salt over one’s shoulder to the amount of times you can legally sneeze at any one time, according to superstitious law, before something either good or awful happens to you, right down to the cutting of toe nails and which days you either can or cannot cut them.

Therefore, because of the coincidental appearance of the three rabbits on the scratch card and the fact that I had just emailed my cousin Viv to send me the complete version of the poem, ‘The White Rabbit’, from which I wrote a previous quote and can somehow relate to my HIV status and will feature in its entirety at the end of this post, we made the call – and guess what? Predictably, we had won the holiday to Majorca for one person, the other had to pay of course, sharing a twin room, but only after paying a ‘refundable’ deposit of £75.

So the moral to this tale apart from disencouraging people from having unprotected sex, is whatever you do, don’t scratch!

The Graveyard Shift

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Well, I did as promised and went to put flowers on my mother’s grave with my son Ben, because I felt she deserved them after sending me the spiritual courage to speak out about my status to the world. But the trouble was, by the time Ben came back from good old Asda with the flowers, after sneaking in a couple of games of pool, it had already turned dark. Nevertheless, I had vowed to do it that very day, so we grabbed the torch and off we went in the car.

Pleasington Cemetry is huge graveyard situated on a hill behind Witton Park, so the long driveway through the darkened fields was spooky enough in itself. As we drove at a suitably funereal pace through the avenue of ancient trees, maintaining a respectful and decidely nervous silence, within the sweeping spotlight of the car’s headlights, silver silhouettes of rabbits froze into mesmerised sculptures, then bounded off, disappearing into the black night.

I remembered the poem my mum used to recite to us as children and that I in turn had recited to Ben –

“There was once a rabbit with silver fur, and all her neighbours looked up to her.”

The feeling of Halloween was still in the atmosphere; the glow of premature bonfires visible in the far distance, the smell of fireworks powdered the air.

As we approached the crematorium, there were no lights apart from the blue glow of the solar lanterns illuminating some of the graves. As we passed the tiny graves of children, sculptures of fairies and angels and battered old teddies glowed with a spooky eeriness. Wind chimes tinkled in the slight breeze.

We got out of the car and wandered amongst the headstones, each one lighting up in the torchlight, the names of the deceased illuminated one by one like the credits in a film. My mum’s headstone is a white marble book and because she’d always suffered from claustrophobia, we hadn’t lain a heavy marble slab over her grave, instead we’d covered it in tiny white marble stones and planted a small lavender plant because she loved the smell of lavender.

It has been a while since I’ve visited the grave I’m ashamed to say and the lavender bush had grown to magnificent proportions and unknown plants (weeds probably, however in the torchlight they looked quite pretty) had forced their way between the stones. Ben shone the torch on the silver vase with all the little holes and I arranged the flowers as best I could, all the time talking to her – “I’ve done it mum, I’ve been on the radio, I’m no longer invisible, I’ve found my voice again after all this time, you would have been proud of me I know. “

“We miss you,” said Ben, “and I hope you are happy with all the other spirits.”

 At this point, at the mention of other spirits, I began to feel a bit spooked. I didn’t mind the thought of meeting my mother’s spirit, in fact I would have welcomed it, but meeting  others from the great unknown? Well, that was a different matter altogether and I must admit, I wanted to leave and quick!

As we drove back through the lines of graves, some flashed in the the car headlights, like cameras taking pictures – the graveyard paparrazzi perhaps.

It was good to get home and sit down at my computer and talk to the cyber world instead of the spirit world, only in this case, I really hope someone out there – and that means you – talks back to me.

A GREAT BIG THANK YOU

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I would like to say a great big thank you to everyone who has visited the site and most of all to the people who have taken the time to post a message on the blog. I can’t tell you how much your kind and supportive comments have meant to me – and moved me to tears at times.

Not sad tears I hasten to add, although sadness always plays a huge part in this HIV equasion, but the fact that you have supported me also means hope for other women and men out there affected by this disease, in that by supporting me, you are also supporting them.

For that reason I ask you to keep visiting the site and posting your comments and in that way we can keep the vine, the hivine, flourishing and continuing to grow from strength to strength. I like to think of every visit as a leaf on the vine and I will continue to update the site and add useful leaf-links for people with HIV, their friends and families and also for people who just want to become more aware of the facts, figure and myths relating to HIV/AIDS.

There will be a help-vine, a fact-vine and who knows, maybe even a love-vine – and don’t forget, you will have ‘heard it on the hivine’.

Talking of vines, this blog all came about because of taking part on the Jeremy Vine show on BBC Radio 2, so I would also like to particularly thank him for giving Catherine and I the chance to speak out to the nation and thereby do our bit to help to raise awareness about what it is like to live with HIV and let’s hope he continues to give people the chance to take part in his brilliant programme on current issues.

My son Ben and I are going to put some flowers on my mum’s grave later on today because I am sure she is watching over me and probably gave me a spiritual push to speak out. As I said in the interview, she was with me when I first found out about my status and urged me to be strong and call upon my ‘true British grit’, which like I said I have been forced to call upon on a daily basis ever since. But thanks to her and the collective inherited genes of my wonderful family, I have the strength and will to carry on and I will continue do everything in my power to reduce stigma and predudice for all of us who have had our lives blighted by HIV – and I sincerely hope you will help me.

I would also very much appreciate any feedback on my autobiography ”The Spider and the Fly’, which tells the story about the how, why and when I became infected by HIV and the trials and tribulations of my journey navigating within it’s deadly perimeters. I will post regular chapters and hope you enjoy reading it,

Once again a great big thank you to everyone,

Adrienne

First Post

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For the first post I would like to explain how this blog came about. As it is the run up to World AIDS day I was asked if I would do a radio interview about what it is like to live with HIV. I agreed although I am starting to have my doubts now on the eve of the broadcast about coming out to the world – or at least anyone who listens to The Jeremy Vine Show on BBC Radio 2.

The name of the blog derives from that, as in the vine part, the HIV speaks for itself. I also thought the vine would be a good symbol to have as it grows rapidly and also connects people together, not to mention the play on words of the famous song,’ I heard it on the hivine.’                                                                 

I sincerely hope that other positive women will be a part of the vine, the hivine as joining forces or voices can only make us stronger,

Adrienne

If anyone wants to contribute posts and pages to this blog, please send an email to hivine@gmail.com and we can make you a contributor.