You’ve heard of the thirty nine steps, as in the famous novel and the film by Alfred Hitchcock, well I’m talking about the sixty five steps, albeit not in a hitchcocky kind of way. These muddy and often perilous steps are located in Sunnyhurst woods where we go dog walking and they are very very steep.
Yesterday was my sixty fifth birthday so naturally I felt duty bound to surmount the blessed things with the aid of my trusty walking pole and Lady Doodles of course watching me concernedly all the way up. I decided on each step to count my many blessings and also to make a wish.
It went something like this – first and foremost for my son to find happiness (and a job!!). I gave thanks for my sister and my friends and family and not forgetting Lady Doodles of course who was giving me an encouraging lick every time I lingered on a step to catch my breath and nearly knocking me back down with her boisterous concern.
I gave thanks for my HIV meds, wished for a cure for HIV and that I’d win enough money on the lottery to pay off all my debts. Then I ran out of wishes and I was only quarter of the way up. Well that was a surprise! I must be reasonably content with my lot I thought if I don’t have anything more to wish for.
I kept repeating them all again for good measure until I reached the top, uprooting the odd piece of Himalayan balsam on the way – pesky bloody stuff. It’s taking over our beautiful English countryside and Sunnyhurst woods is riddled with it to the point where the poor bluebells this spring were almost completely obliterated. Some of it is way over six foot tall and they’re the most satisfying ones to uproot. It’s called Balsam bashing.
I’ve been on a personal vendetta to get rid of at least as many as possible so they can’t come back next year, but it is an impossible task. In fact it reminds me of the HIV virus, slowly taking over, running amok and killing off everything in its path. Maybe that’s why I enjoy uprooting it so much and tossing it somewhere it can’t re-sprout, then crunching on its juicy fat stalks. Freeing the ferns! Bashing the balsam! It’s very therapeutic. Better than bubble wrap. You should try it sometime, but it’s a bit late now as autumn is upon us and everything is dying off – although thankfully not me as I have survived yet another year Himalayan balsam and HIV aside.
Luckily we have our meds to keep our ‘Himalayan balsam’ under control, at least here in the UK. Some other countries however are not as fortunate. Bugger it! I should have wished that all countries could have access to HIV medication. Oh no, I will have to go back and climb the sixty five steps all over again!!
How To Survive A Plague
Today we celebrate those living with HIV/AIDS who witnessed the darkest days of the epidemic, when living to 50, 60, 70 years old was unthinkable. But as people with HIV/AIDS enter a new phase of life, so must the science! More testing! More prevention! More care! And more understanding of how HIV and AIDS must be treated as the population ages.
There isn’t a word to describe how low I’m feeling about myself today. Oh, hang on a minute, yes there is, of course there’s a word that describes me right down to a tee. Its positive, that’s what I’m feeling - HIV positive. I don’t usually feel like this as you’ll know if you’ve read my previous blogs. I am an HIV warrior, an activist, a take me for what I am and what I have or leave me kind of person. But something happened today that has knocked me for a six.
I was awarded a voucher for a facial at a local beauty salon for completing a survey, you know the ones where after you’ve spent half an hour answering all the questions more often than not they inform you are not suitable for that particular survey. Anyway, this was the first one I’d actually got something for, so I thought I might as well use it. It’s been many a year since I’ve visited a beauty salon, before I was diagnosed in fact, thirteen years ago, as you can see from my face which is displaying the ravages of time, not helped by daily dog walking in extreme weathers and the ageing effects of the HIV medications.
The salon itself was very tastefully decorated with relaxing music and scented candles. The therapist led me upstairs to the treatment rooms then left me to fill in a form. I answered all the questions, was I allergic to anything etc. no, no, no.
“You haven’t filled in the other side of the page,” she pointed out when she came back - and there they were, the dreaded questions, the ones I thought I’d been reprieved of -
Do you have any problems with your health? Are you taking any medications? Do you have any infectious diseases?
I have been undetectable for thirteen years, I was not a danger to her, it’s the people with a high viral load who don’t know they are carrying the virus that are the danger.
Should I tell her or not?
I decided not to. I ticked ‘no’ to everything, then boldly signed it with a determined flourish.
I have just told a major lie, I thought as she stood up to lead me to the treatment room. Could I go through with it? Unless I told her she would never know.
“Just a minute,” I called her back; “I haven’t been honest with you. I am HIV positive, but I have an undetectable viral load and therefore I am no danger to you."
“I will have to ask about our insurance,” she told me and sped off like a bat out of hell to have a word with her boss.
“I can treat you only if I wear surgical gloves,” she announced when she came back, “which I am quite willing to do,” she didn’t want to meet my eye, “but unfortunately we don’t have any in the salon.”
I wasn’t expecting to, but I started to cry, the tears just welled up and my throat constricted as it all came back to me. It was like being told I was HIV positive all over again. I am quite strong, I am not usually shy or ashamed about telling people I am positive, but suddenly I was a quivering wreck. I felt two feet tall and like something the cat had dragged in. I was dirty, contaminated, not fit for human touch – I was untouchable. An HIV leper.
Surgical gloves? Can you imagine? It would be like being massaged with washing up gloves - yellow marigolds!
I was briskly seen off the premises after refusing the offer of coming back next week when presumably a stack of surgical gloves would be in stock purely for my benefit. I got in the car and drove home crying all the way. This feeling of no self worth has stayed with me all day and might take a while to appease. It’s time like these when I hate HIV with a vengeance and everything to do with it and in particular the person who gave it to me. HIV has robbed me of many things and given me nothing in return, although I sometimes try to fool myself that it has – if it wasn’t for HIV I wouldn’t be the person I am now. Huh! Exactly! Living in poverty, prematurely ageing, and not forgetting untouchable by human hand.
Great, well thanks very much HIV - and not forgetting that poxy beauty salon, which incidentally is called The Beauty Emporium and is in Accrington. If you are HIV positive or even if you’re not, give it a wide berth!
I’m sorry for being such a wuss today, but that’s what stigma can do for you and all of us pozzers know that stigma is the worst part of living with this disease and sadly still is to this day. It’s bloody ridiculous.
I’ll leave you with a song made famous by Michael Buble (and a few others!) to describe exactly how I’m feeling.
Birds flying high..... you know how I feel..... sun in the sky..... you know how I feel.... breeze driftin’ on by.... you know how I feel - It’s a new dawn - it’s a new day - it’s a new life for me..... and I’m feeling ...........positive!!
Woofevenin – Lady Doodles here to cheer you all up with one of my woofsterical upbark blogs. How about this for a laugh – Pack Mistress and Tio Luis took me camping to a Doodlefest. For those of you who don’t know what that is it’s a gathering (or festering as the case may be!) of labradoodles in a big open field, a bit like Glastonbury only without the music. They thought it would be a good idea for me to find out more about my roots and discover what makes me lick.
Well all I can say it was a bit like being at an Irish wedding, (or a wake!) and being forced to spend time with your distant relations, most of whom you’ve never even met – and given half the chance wouldn’t want to meet! Although unlike the latter there was no trouble what-so-woof-ever, no drunken brawls at all at all, although there were a few drunken shenanigans, especially after the doodle disco.
I met some very handsome doods, one in particular (you can see him if you can be bothered to watch the youtube video below) sporting a jaunty blue bandana. Packmistress and Tio were useless campers although it was their first time. They forgot the main essentials such as tea bags and wine (PM can’t live without either) although they did remember the corkscrew and thankfully the sausages.
We all had to sleep together in the all weather kennel which they’d borrowed from a friend and couldn’t remember how to put up. Once erect it was quite cosy although a tad cramped and we all had to kip on the floor. Now they know how I feel - that’s not strictly true to be fair as at home I have a whole selection of beds, sofas and chairs at my disposal. Our nights were disturbed however by Pack mistress who kept sneaking off then disappearing into a blue tardis affair like in Doctor Who. I had to accompany her just in case she was spun off back into another century and never came back. Tio didn’t bother with the tardis, he just lifted his leg against the nearest tree or behind the kennel and once against the wheels of the car! The same went for the other campers every time they left their kennels, which was often the case especially if they’d been on the doodle stout, a doodle would start woofin, then all the other doods would follow suite, including me, so there was no peace to be had.
As for the doodle disco I’ve never seen anything like it, one of those discos where you can't hear yourself bark! just watch the video footage and you’ll see for yourself – madness. Talk about mad dogs! Pack Mistress kept dragging me on the dance floor/muddy turf to cavort with her. She kept tapping her bosoms commanding me to jump up. Usually she whacks my bum if I do that and screams DOWN DOWN. Just because she’s seen that poncey Pudsey do it on Britain’s Got Talent.
To be honest, I couldn’t wait to get back in the car the next day and come home. Enough was enough. I don’t care if I see another labradoodle for quite some time.
It’s lovely to be home, I will never whine again - unlike PM who opened the bottle she forgot as soon as she got through the door. Went for a walk with my benefactress hanty Joodles today and I was on my very best behaviour. Normally she’s not that keen on me but I keep trying to win her affection because, let’s be honest, I know which side my bread’s buttered, although she thinks I only eat kibble! Little does she know! Anywoofway, Pack Mistress was walking another dog who growled at someone's precious pooch and wouldn’t come back when she called. “You really should train your dog,” hanty Joodles shouted looking smug and patted me fondly on the head. You should have seen PM’s face – how we laughed!
If we have to go camping again I want one of these beauties I saw on the internet –a custom designed caravan with my own number plate and fitted carpets.
There’s nothing as camp as a row of tents as some of PM’s more colourful friends would say!
One woof for now, Lady Doodles.
Doodlefest 2014 - The movie!!
Last month I was a speaker at the 16th Annual Conference of the National HIV Nurses Association. The title of my presentation was, Late Diagnosis - the patient’s experience. Listening to one of the HIV nurses talking about stigma reminded me that it is not only us the patients who have to suffer from stigma but also the people who care for us and that includes our HIV nurses. I remember asking mine why she also had to remain ‘invisible’ and she told me it was to protect us and to protect our families. Because of having to hide and remain anonymous in this manner I feared she would never receive the true acclamation she deserved for all her vital work. HIV nurses play a key role in the lives of HIV positive patients, so on behalf of positive people all over the world all I would like to say a great big thank you.
It’s not only our HIV nurses and specialist doctors who play a huge role in our lives but also the scientists and researchers who will hopefully find the cure for this disease. Tragically many were wiped out in the Malaysian air crash. We owe them a huge debt of gratitude for the momentous goals they achieved before they met their premature deaths in such a shocking manner leaving us with such a devastating loss - a loss of some very great minds and a loss of hope for the future.
Downing of Malaysia Airlines: Effects on International HIV/AIDS Research According to The Richard M. Brodsky Foundation
The Richard M. Brodsky Foundation would like to issue the following statement with respect to the downing of Malaysia Airlines flight MH17. There were 100 AIDS researchers, activists, public policy advocates and visionary planners about finding the cure for AIDS on the doomed flight. Dr. Joel Lange, former President of the International AIDS Society, had a novel approach for finding the AIDS cure. He managed to convince the AIDS scientists that while AIDS is a medical disease, it is first and foremost a medical pandemic. His plea to researchers: share your research. It is not about who discovers the cure, but that the cure is discovered. Currently there are 1,600,000 people dying from AIDS every year while there are 2,300,000 new HIV cases every year according to the UN AIDS Report for 2013.
The tragedy of the MH17 airline crash not only extends to the loss of 298 humans lives, but to individuals across the globe. Among the flight's manifest were about 100 contributors that were planning to attend the 20th International AIDS conference in Melbourne, Australia. It's incredibly devastating as there was a loss of knowledge and experiences that could impact the progression of research. The annual conference is very different from traditional medical gatherings. There is a mixture of scientists, clinicians, human rights activists, patients & public health employees that come together in order to collaborate. These events have helped drive understanding and responses to HIV/AIDS in a short amount of time.
Dr. Joel Lange was a Dutch clinical researcher who focused on HIV therapy. He served as the former president of the International AIDS society. He was also the founding Chairman of PharmAccess Foundation, which advocates the improvement of access to HIV/AIDS therapy in developing countries. Dr. Lange played a very active & important role in HIV/AID research. In the mid-1990s, he advocated for the use of combination therapy in the management of HIV/AIDS. This was important as it reduces the development of drug resistance compared to monotherapy! He was an important advocate for providing affordable AIDS medications to African countries. "If we can get cold Coca-Cola and beer to every remote corner of Africa, it should not be impossible to do the same with drugs." Dr. Lange was a charismatic leader who promoted collaboration among doctors and researchers. Additionally, he helped promote the idea of HIV/AIDS being a medical pandemic and not a disease. It is not a question of who gets the glory for discovering the cure to HIV.
About the Richard M. Brodsky Foundation - The Brodsky Foundation's goal is to raise awareness that there are 15,100,000 AIDS orphans living in sub-Saharan Africa who have lost one or both parents to AIDS. A lack of doctors, medicine, affordable healthcare, education, clean drinking water & nutritious food combined with an abundance of poverty, hunger, malaria & tuberculosis is the reason why 2/3 of the people dying from AIDS are from sub-Saharan Africa.