Reach Out: October 2008

This article is originally from http://www.avert.org/womstory.htm#stry14

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I just wanted to share my story with the hope of changing someone's life who is currently living with the virus. I was diagnosed in 1994 when I applied for life insurance - you will not even begin to imagine the shock that I experienced upon hearing the news.

I only shared the news with two people (my then boyfriend who seemed very supportive and not at all shocked by the news - I only realized later that he probably knew about his status - in any event this was not important to me at that particular moment) and the gentleman who sold me the insurance.

After the initial shock I went into complete denial - you see I chose to ignore the fact of my status - even though at the back of my mind I knew - over the years on several intervals I will re-test ‚just to make sure‚ and the result was still the same. I chose to just continue with my life and pretend like nothing has changed.

I did some readings on the virus and the literature I read was not inspiring as it spoke about the toxicity of the treatment, the stages of the virus and so on, which frankly was not something that I wanted to hear at that time. Needless to say I did not bother doing any viral load and CD4 count tests; after all for all intents and purposes I was healthy.

Years went by and I read and heard of people dying of the disease, listened to peoples perceptions about the disease, saw people getting ill from the disease and still chose to be in denial about my status - of course from time to time in my alone moments I will think about the virus living within me - so I did what I thought was best; surrounded myself with people all the time, went out partying, had lots of friends (in reflection I realize that it was my way of trying to escape what was happening to me).

Even when I had an odd cough or a feeling of being unwell I will not share my status with my Doctors for fear of what I will hear them say (you have full-blown AIDS), never mind my circle of friends or family. This continued until 2005 when I had what seemed to be a cold, which my doctor diagnosed as broncho pneumonia (of course I still did not tell him about my status) - the treatment did not work of course and I continued to have this cough and the doctor then suggested we do an HIV test - I still did not tell him that I had tests done years ago of which all came back positive - I think I was still hoping for my miracle. The tests did come out positive and he also did a CD4 count test which was at 35. He then advised me to immediately go on ARV treatment and I agreed - I still did not tell him though that I had known for over 10years of my status - I suppose at this stage it did not matter much.

After prescribing the ARVs we spoke of the possibility of side effects and the importance of taking the tablets as prescribed, the next milestone was to go to the pharmacy to hand in my prescription and feel the discomfort of having to see the pharmacists giving me the discreet look and wondering what the heck they were thinking.

Having survived that episode the next was to get home open up my package and read about possible side effects of the various tablets I was given - to say that I was scared out of my mind will be putting it lightly - then came night fall when I had to take my tablets - within an hour of taking the tablets I started hallucinating, then I got really scared - I jumped out of my bed went into the bathroom looked at myself through the mirror and the sight of what I saw nearly drove me insane - my face looked puffy, my eyes looked liked I had seen a ghost, the right side of my face was shaking and I thought I was going to have a stroke.

I had the courage to get into the shower and all the while I was thinking about my two children - this is when I started to pray like I never prayed before - after taking the shower I woke up my daughter who was 16years old at the time and asked her to wake up our neighbor to drive me to the hospital. (By the way I had already found the strength to tell my daughter about my status and had assured her that I was going to be ok). So for her to see me in this state I cannot even imagine what that did to her - but the worst was still to come.

My neighbor rushed me to hospital - he did not have a clue what was happening to me - by the time I got to the hospital I was literally going insane even though I still had a sense of what was happening around me - I tried to speak but what came out of me was just gibberish and I thought I had completely lost it. The doctors thought that I probably had meningitis (since I also bought with me my ARVs - at least I still had the sense to do that) - the test came back negative however. The next test they did was TB which came back positive - it turned out that the first doctor misdiagnosed me (even though I do not blame him as I did not share my full medical history with him) and that I was having an adverse reaction to the ARVs due to the TB.

The next few days were the worst as I continued to hallucinate and have strange dreams that I was dead and had said my goodbyes to my children - it was later that my daughter told me that I was just lying there in that hospital bed and stared blankly into space - and that one day I then told her about where to find my last will and testament, my account details and who to speak to about my funeral arrangements - to me all of this happened when I was already dead since in the state I was in, I experienced myself saying my goodbyes after having died. Other things I said did not make sense according to the nurses who take great care of me - other things were amusing and so on.

When I began to get my sense back there was one thing that was clear in my mind and that is I NEEDED TO TELL PEOPLE CLOSE TO ME ABOUT MY STATUS. I first spoke to my children to make sure that they were ok with my decision as it was bound to affect them (my son was six at the time so I explained what I could to him without scaring the hell out of him). Once my daughter gave me the assurance that she was ok with my decision, the next step was to tell my family - fortunately for me my uncles wife is a nurse and she told me that I can beat this disease - even though I know that they were worried about me seeing that I was already lying in a hospital bed and had lost a significant amount of weight due to TB they still offered me support and assurance, the next was to tell my colleagues and friends and decided to write out an sms message and send it out to everyone who was on my phone list - this of course created shock waves around the circles of people that I know - what followed though was an amazing outpouring of love and support - even though most people around me still don't feel comfortable talking about my status - I know through their hugs and smiles that I have their support - there are those that came to me later and told me that I was an inspiration in their lives.

Once I had done this, the next step was to take a decision to LIVE- so this time around I spoke to my doctor, I read a lot of stories on people living with the virus, treatment options, I did a lot of research because finally I realized that ignoring the disease wont make it go away. The website that gave me a lot of information about the virus was www.thebody.com

I still had to take my TB treatment for six months before I could resume with my ARV treatment - this was also a struggle in the first two weeks whilst my body adjusted to the treatment and I had a few side effects but within no time my body had gotten used to the medication.

Once the TB treatment was complete and I was ok, then there was still the ARV treatment (this time the doctor decided to change my prescription from the original one - he still explained to me the possible side effects and what I can do to minimize the side effects.) The day that I had to take my ARVs was again needless to say very scary and with the exception of insomnia there was little side effects, when the insomnia continued for a few weeks my doctor referred me to a psychiatrist who prescribed something that helped me sleep without interfering with my ARVs. Two months later I decided to stop taking the sleeping tablets and started adjusting myself to sleeping without them - a few meditation tapes helped a lot during time until I could fall asleep without any help.

Six months later I had to go back to the doctor for my bi-annual check-up and CD4 and Viral Load test - the results came back and my viral load was <50>

Since then there was no doubt in my mind that I had to live and I know that to be able to live positively with the virus is to make correct choices everyday - I do not have the stress of hiding my status from people who love me - I have a circle of support around me - how blessed can a person be.

I am happy to report that almost three years later my CD4 counts is rising (around 400 now) and my viral load is still <50.>

My only struggle now is to loose some weight - I had initially lost a lot of weight when I contracted TB - and have since gained a whole lot more (in 2005 when I was hospitalized I weighed 70kgs and today I weigh 95kgs) what makes me laugh is even hinting that I need to loose weight to my friends, colleagues and family is met with resistance and comments such as ‚you are fine the way you are‚ I guess it will still take time to educate people that losing weight for an HIV+ person is good for them; since there are a lot of associated complications that one should not have when living with the virus such as diseases associated with obesity.

The other day I was talking to my immediate boss about getting on a program to lose some weight and you should have seen the horror on his face - it is amazing to see that people still equate losing weight with being sick - especially when they know that you are HIV+. The other matter is how people around you worry even if you get a common cold; I know that it is because they care about me but it does bother me that people start panicking every time I as much as sneeze or just suggest that I am not feeling well - just the other day I decided to take a two days off work since I was feeling exhausted and you will not believe the number of phone calls and messages I received from friends and colleagues enquiring if I was okay - my daughter tells me that I should be grateful that so many people care about me and stop complaining!

So to all my family, friends and colleagues please know that I am grateful and appreciate the love and support that you give me and I love all of you.

To my children, how can I begin to thank you- no words are adequate to describe the respect and admiration I have for you- especially my daughter you are my hero; I am glad you are my children and everyday I thank God that HE chose the two of you to be in my life knowing that you will one day be an inspiration. From the bottom of my heart THANK YOU!