This series of very personal insight into the trials of living with HIV medications was first published by GayNZ.com in September 2004. Dear reader, I've written this introduction to briefly explain why I prefer to use a pseudonym while opening three months of my diary publicly. Also what drugs I am taking and the circumstances surrounding them. I've been on several HIV drugs and combinations of drugs over the past ten years and know that they can cause side effects. Some of those side effects are transitory, just an irritation. Others are more frustrating and even debilitating. People fairly close to me will know about some of these side effects but many people will not. Frankly, I don't want people who don't already know about the effects of my HIV medications to know more than they do. I don't want them pitying me or having more of a window onto my private affairs that they already do. In opening my diary there was always the issue of a tradeoff between privacy and openness. By remaining anonymous I believe I will maintain my day to dignity while still being able to allow the frank and more or less unedited reality of HIV drug-taking to be presented. Some people with HIV have a greater or lesser number of side-effects than others. Or different mixes of symptoms and conditions. Or to a greater or lesser degree. I don't think that anyone ever knows in advance how a combination or individual drug will affect them. The same drug in different combinations can behave differently. No-one knows until they're on the combination. I'm lucky, I've escaped the worst of the side effects so far. There are a limited number of HIV-fighting drugs which can be used in a variety of combinations. But stuff up on one combination and your chances of using those drugs effectively in the future, even in other combinations, are considerably lessened. If you become sloppy in your adherence to your drug-taking schedule the virus will mutate and you can say goodbye to at least one of the drugs in that combination forever, and possibly to a few related drugs from the same family as well. Once you're on a particular HIV regime it's best to stick to it as rigidly as possible for as long as possible. I want to correct an inaccuracy I promulgated and which found its way into GayNZ.com's editorial introduction to this series. The combination I am about to take (saquinavir, ritonavir, d4T and ddI) is in fact not a new one to me. I have been on it for nearly 18 months and it did not fail. I chose to come off it for four months so I could travel overseas. Choosing to come off HIV medications is not generally a good idea. It's risky and I wrestled with my conscience and did much research before deciding that four months of travel would be important to my sense of well-being and as a complete break from my usual routines. It was a risk I decided to take, but one that few reputable HIV specialists would endorse. Mine didn't but he understood that I had made my decision carefully and supported me through that. Many countries will not allow entry to HIV positive people (the USA in particular, even for transit passengers in this post-Sept 11 era of high security and intrusive forms). Carrying months' worth of HIV medications in your baggage is a dead giveaway and it's impossible to hide up to 20 rattling bottles. Then there are the problems of trying to placate border officials in countries where language and lifestyle customs are a barrier. I chose unimpeded travel assisted by a few lies on entry cards. A side benefit was week after week of not having to take handfuls of pills, not structuring my days around when particular pills have to be taken. Weeks of fake normality. But in my time away my viral load count (the level of HIV in the body) soared and my t-cell count (a measure of the health of the immune system) plunged. Luckily, my specialist felt my existing combination may still be effective. That is a huge relief as the risk of “throwing away” a combination is not one I am comfortable with, whatever the reasons behind stopping it. Luckily also, I already know the side-effects this combination generates in me. I have asked that my diary notes be presented weekly instead of as a single block. I hope that you will return to them every week for the updates to help you understand that taking HIV drugs is not a transitory thing. Imagine these observations grafted on to your own life, week by week. Once you're on HIV medications they just go on and on and on, week in and week out. One episode of unsafe sex is all it takes to get HIV, but the bloody pills go on forever. Please bonk safely. John Stone Note: Diary entries collated and edited by GayNZ.com. Week 1 Wednesday Collected the pills from the hospital pharmacy. Cost: $86, nothing compared to the real cost of the drugs which runs to thousands. Thank goodness for the welfare state! A “supermarket bag” heavy with rattling bottles... one month's worth. Two soy sauce-type dishes to lay out the day's breakfast pills, dinner pills and the one pill to be taken without food is put by my car keys. Bottles into the cupboard or fridge as required. Will start tomorrow, a day earlier than planned. Have arranged to work half days Monday and Tuesday. Some staff know why, some don't. Thursday At breakfast the little pill dish haunts me so made extra-cool breakfast: bacon and scrambled eggs, banana smoothie, wheaty toast and plum jam. Nice meal, ruined by following it with a big glass of water and a handful of pills. Remembered to take pill without food mid afternoon. Remainder after dinner, though I wait half an hour after the meal, savouring the pasta before dumping the chemicals down. Can't help doing this, I love good food. Suppertime: cup of tea and setting up tomorrow's pills. Friday Wake late, rushed breakfast of toast and recommended grapefruit juice to promote absorption of some of the drugs. Flush pills down one by one, busy morning at work. No side effects yet (though stomach objects slightly to acidic juice). Nearly forgot "foodless afternoon pill"... swallow it after work and delay dinner by 90mins. Live alone so meal timing not an issue. Watch a video, set out more pills in dishes, bed. Saturday Wake with urgent need to go to the toilet, slight case of the runs, but could be the grapefruit juice or yesterday's lamb korma lunch. Sausages, bacon, tomatoes, egg, toast, etc. Smells great but appetite is low. Sausages and bacon lacking in taste. Eggs ditto. Only half a glass of grapefruit juice, listen to Kim Hill, swallow pills and head out shopping. Carrying supermarket bags up to apartment I get that urgent in the bum feeling, serious runs. 10 minutes unhappy on toilet thinking of the months past without this problem. A couple of Lomotil to plug up the arse. Salad lunch, afternoon with friends hedge trimming, foodless pill taken discreetly. 6pm: Caught short coming up stairwell again, open front door and straight onto toilet. Dinner, pills. Movie with friends, toilet stop before entering the theatre (precautionary) and after (very necessary). Hot choc GayNZ.com - 14th March 2006
Credit: John Stone; GayNZ.com
First published: Tuesday, 14th March 2006 - 12:00pm