ADRIENNE'S HIV BLOG – Hivine's Weblog

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

Archive for October, 2009

Jennie’s Story

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laboda©adrienneseed

I feel very privileged to be able to share this story with you about an amazing woman who has been through the most horrendous time and come through it like a shining light – her courage and determination in the face of overwhelming odds will surely light the way for other positive women, all women in fact and give hope and inspire us all. I would like to thank her for sharing her story with us and I’m sure that like me all hiviners will wish her a continued happy future and health and happiness in the years to come.

Jennie’s Story

I was diagnosed with HIV in June 2006

I had been a single parent for six years and had recently started a serious relationship things were going great, I hadn’t been this happy for a long time. I soon found out that I was pregnant this was fantastic news for both my partner and I, we were so excited…little did we know what was about to happen.   

The day of my first appointment with the midwives arrived, we attended the appointment and everything looked really well, we came away very happy and excited, a couple of days later I started with an itchy rash on my neck which was really irritable so I decided to make an appointment with the doctor. I walked into the doctors room and he asked what was wrong, I told him about the rash and he looked at me inquisitively and said ” well im glad you came in today as some of the tests the midwives did have come back extremely odd” I asked what he meant, he replied one of the tests suggests that you might be HIV positive. I couldn’t believe what I was hearing what did he mean? Apparently the test had come back inconclusive so I would have to be tested again. I felt numb I couldn’t really take all the information in. I had another test done and was sent home. 

I really didn’t know what to do I needed to tell somebody, I decided to confide in my mum, I was truly devastated, my mum was really supportive and comforting, how do I tell my partner the father of my unborn child that I might be HIV positive I felt as though the first bit of happiness id had in years was about to be swept from under me. 

I finally got the courage to tell him, it was one of the hardest things iv ever had to do, he was so supportive and optimistic he assured me not to worry and that everything would be OK and that it would all is a big mistake, but deep down I had a terrible feeling. 

I had to wait two whole agonising weeks for the results of the test, id continued with normal everyday life for the sake of my son who was totally oblivious to everything that was going on around him, I was still going to work everyday even though I couldn’t stop worrying, I rang the doctors everyday to see if my results had come back but every time I was told no. Then one late afternoon my phone rang it was a midwife from the hospital making me an appointment for ladies like me, what do you mean ladies like me I asked and she went on to confirm the devastating news. 

Nobody from my doctors had even bothered to ring me to tell me my result had come back positive, I later spoke to my doctor who confirmed this and had made me an appointment the following day at the local GUM clinic. 

I was a wreck, my partner was really supportive and strong the whole time. We attended the appointment together and were both tested again, we left with lots of literature and a bag full of condoms. At the time I felt like I never wanted to have sex again. 

My partner’s results came back negative, but he remained supportive, we still had a baby on the way and we had been assured that with the right treatment throughout my pregnancy our baby would be well. 

In the meantime I decided that I wanted to be signed off work as it was all too much for me, work wanted to know what was wrong, I then went on to make the mistake of telling them and this was the first time I encountered discrimination, I was made to feel extremely uncomfortable at work, I was already going through enough at that time without the added stress of people treating like a leper at work so I decided to leave my job. 

My pregnancy progressed and I started treatment, it made me feel ill but I coped. On the 14th December 2006 our son was born who is negative. 

We gradually started to accept that I was HIV positive although life was very difficult for a long time; I lost all my confidence and use to find little things like leaving the house difficult, I had counseling which helped a little and with time things started to get easier. 

In 2008 more heartache was to come. Just as life was starting to get back to normal I found out that there was a problem with my heart, at one of my HIV checkups the doctor had picked up on a heart murmur and referred me to a specialist who confirmed after numerous tests that I had a large hole in my heart that was life threatening and it would have to be operated on to correct it. 

This put things into perspective for me, for so long I had been worrying about the HIV, worrying how long I would live for and when I would have to start proper treatment, I was only 26 years old I had a family I was HIV positive and now on top of that I was on a waiting list for open heart surgery. 

The months leading up to my operation were agonizing, I was terrified of dying and never seeing my children grow up, I knew people were terrified of HIV and I worried that this would affect the treatment I received in hospital. 

The day I had to go into hospital arrived, I said goodbye to my two children, a one year old and an eight year old, I was terrified.  We arrived at the hospital the night before my operation where the doctors prepared me for the op. They asked questions “do you smoke”? “When did you last eat”? Etc. Then one doctor asked me about my HIV he asked me to confirm my status and then went on to ask me if I had any other stds or syphilis, this made me feel extremely uncomfortable I told him “no” and he left and said he would see me in theatre. 

I didn’t sleep that night; I lay awake all night worrying. The day of my op arrived and they wheeled me down to theatre, I cried.  The next thing I remember is waking up in intensive care I was so relieved I’d made the operation. 

I was wheeled back up to the ward in a wheelchair I felt awful, I had chest drains in which felt really uncomfortable, a nurse came to transfer me from the wheel chair to a bed, she couldn’t manage on her own so shouted to one of her colleagues “can you help me with this lady, you will need to wear gloves she is HIV positive” I couldn’t believe what I was hearing she had just broadcast my HIV status across a whole ward. I was heartbroken, I could hear people whispering, a nurse came over and instructed the nurse putting me into bed to give me some more pain relief, she thought I was crying because of the physical pain, but I wasn’t I was crying because of what the nurse had just done. I had never felt so uncomfortable in my whole life. 

A week later I was allowed to go home, I was relieved, I was better just in time for Christmas and we had the perfect family Christmas. I soon returned to work, and now I live my life to the full and I realize that being HIV positive isn’t the end of the world, if I had never been diagnosed HIV positive I might never have found out about my heart condition and I might not have been here writing this story now. My partner and I got married two months ago and are happier than ever, I know we have a tricky future ahead but together we are strong and will continue to be.

In My Life

"Daffers" Adrienne Seed

"Daffers" Adrienne Seed

I came to Ibiza for a week to escape and to celebrate turning sixty with my friends who still live here, the ones who are still living of course, although I am sure the ghosts of those who are not were celebrating with us, because I swear I could feel their presence and even see them at times. Some might say that was more likely to have been the result of all the celebratory champagne that was being imbibed but I would prefer to think otherwise.

I have lost many friends here for whom I hold fond and cherished memories, the most recent being Barry Flanagan RA the renowned sculptor who died on the 31st of August from motor neurone disease.

I remember many surreal conversations with him and the time he burnt the kettle dry and set the chimney on fire firing his clay coil pots.

My painting “Daffers” above features Barry as well as many other Ibiza ghosts. It was commissioned by Joel Daphne´s long suffering but adoring  husband when sadly she passed away from cancer and hangs in pride of place in Daffers restaurant in Santa Eulalia.

My mum who also spent a lot of time here with me is also on the painting along with the film star Denholm Elliot of Indiana Jones and “Raiders of the Lost Ark” fame. I can still picture them sitting together in a bar singing ,”These Foolish things.”

He was the first person I knew to die from AIDS although back then I never thought for one moment that years later I would also be afflicted by the same terrible disease.

So many stories, so many ghosts. I came here to escape but it seems you can never escape your memories or the people you have loved ánd would you really want to. For me the memories of these people are still so strong that I feel they are still here with me. 

And maybe they are.

“There are places I remember

All my life, though some have changed

Some forever not for better

Some have gone and some remain

All these places had their moments

With lovers and friends I still can recall

Some are dead and some are living

In my life I’ve loved them all.”

 

“In My Life”  The Beatles

I Will Survive

birthday mexican head sq

When I was first diagnosed with HIV the general prognosis at the time as to how long I would survive was eight to ten years, but with the help of medication I was told by my specialist which was improving all the time, a healthy lifestyle and a positive attitude, anything was possible. I was so ill at that point, I didn’t think I would survive another year let alone make it to my sixtieth birthday, so I was somewhat surprised and a little confused (although I believe that is all par to the course of being a pensioner) to find myself celebrating my very special day last week surrounded by my amazing family and wondrous circle of friends, some of whom I have only had the privilege to meet because of HIV.

A matter of further confusion to me was that half my family arrived in a mini bus from Wales cunningly disguised as Mexicans complete with black mustachios (disturbingly this also included the women and children) wearing brightly striped ponchos and huge sombreros, whilst madly strumming guitars and rattling maracas. The reason for this being I’d wanted to hire a real Mexican Mariachi band to serenade us and sing happy birthday to me in Spanish but it was far too expensive – for example two measly Mexicans cost £700 so you can imagine how much a whole posse would cost. As it turned out my family made an excellent job of singing happy birthday to me and more to the point they didn’t cost anything. Added to this my motley Mexican/Welsh Mariachis (and not forgetting our Great Uncle Peter the Godfather of the family) provided me with a lasting memory which makes me smile every time I think of it and helped to make it a truly wonderful occasion and a birthday I will never forget, unless of course due to my now ripe old age Alzheimer’s suddenly kicks in.

I can’t believe I’m sixty – it is making me feel quite disorientated, but I believe at my age that is also a common ailment. I don’t feel sixty, although I might look it thanks to the damage HIV and the meds have caused to my skin and my body shape. But what do a few wrinkles matter and I don’t really need a bottom anymore apart from to hold my jeans up and due to my advanced years I suppose I’ll have to stop wearing those soon. The fact is I’m still here, that’s the main thing and now what is termed as a long time survivor.

When I was getting ready for my party I was putting my make up on in an attempt to disguise the ravages of time and HIV as best I could, when my son popped his head round the door. “You look great mum,” he enthused, “don’t pay any attention to that stupid mirror.”

The new sixty year old me who is already suffering from an identity crisis, was alarmed to hear that I had also become the victim of identity theft. Unbeknown to me I had apparently changed my address and now resided in Manchester and was the kind of pensioner who liked to spend £700 at any one time in Asda. Does my impersonator not realise that pensioners do not tend to have that kind of money and due to financial hardship and a tightening of the purse strings I am now and have been for some time, a confirmed Aldi and Lidl shopper. Perhaps my impersonator would also like to come and write this blog for me? I’ve since changed my log in information and password of course, but if you do notice a sudden change in my writing style or my blogging character, please let me know because apparently at my age this kind of memory loss and abrupt personality change tends to happen. Perhaps my impersonator was the disgusting, beneath contempt (swearword) person who wrote a message on this blog proclaiming – AIDS is great, it kills people, which of course I instantly deleted.

Anyway, enough about that, it takes all sorts unfortunately, but luckily I am surrounded by the right sort of people and this was very apparent at my birthday party. I had a wonderful night and I know for a fact that if it hadn’t been for the support of my family and friends who travelled from far and wide and from all corners of the globe, well Holland and Ibiza, not to mention Birmingham, Wales and Lower Darwen to be with me, I would not be alive and kicking the sh** (if you’ll pardon the expression) out of HIV related stigma and discrimination. Without their total unconditional love and support I would not be here writing this blog or have been able to do all the things I’ve done. So this is thanks to them and I wish that all positive people in the world could be offered that same love and support that I’ve been blessed by, because believe me, it means so much. So here’s to them and here’s to us ‘pozzers’ and long may we reign over the small minded people who try to bring us down with their undeserved stigma and discrimination.