Dreams Do Come True (cont)

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Hiya

I am so sorry that I stayed away so long. It has been a hectic month or two what with the Petrocalypse, the new government and everything we have all had a harrowing time. Thanks to everyone who commented. Below is the continuation of my freedom-from-LUTH story

When the doctor asked me to make a photocopy of the referral form, I made two. I wanted to see what constituted a referral in LUTH and how she had condensed my 6 years into one flimsy piece of paper. It had just a few lines for what my starting CD4 count had been, what it was presently , if I had begun ARVs or not,  if I was depressed or psychologically troubled and my reason for transferring. I was not really surprised that the doctor had filled my mental state as ‘stable’ and the reason for transfer as wanting a facility ‘closer to home’. It was LUTH after all, but how would things ever change if the discomfort of patients is not taken into consideration and on record?

I set out the next day bright and early for the Community centre. I was really nervous that something would jinx it and I would have to go on my knees back to LUTH. I was quite early again so I had to wait for resumption. The staff were polite as usual, although one lady who did not belong in the reception kept asking everyone who they wanted to see. Being the first person to arrive I was attended to first and I went upstairs to wait for the doctor. It seems the centre begins by about 9.30 am so early birds will have to wait a bit; but the 30-45 minute wait in an air-conditioned, calm environment is nothing compared to the several hours in over-crowded, boisterous LUTH.

The doctor came after a little while and invited me into his consultation room almost immediately. When I handed him the referral letter he asked if had been difficult to obtain to which I replied in the negative. He said he knew it would not be because they would probably be happy to be one person less burdened. He then sent me to the lab to have my blood taken for all the necessary tests after which I would come back to him to be clerked (or booked).

The guy at the lab was on the phone when I entered, there was another man there so he asked that I give them some privacy. I sat on one of the chairs just outside of the door of the lab. After a few minutes , the patient inside left and I thought I heard ‘next’ so I entered the room. The lab guy looked up with a surprised expression. ‘ Did you say ‘next’”? , I asked. No he said.’ Well, were you thinking it’, I asked again. He laughed and said I should come in. It is a testament to how elated I was feeling that I could be my mischievous self at the lab – where there are needles and blood. The lab guy gave me a seat and asked what I was there for. I told him I was not sure but that I had been asked to come and do a blood test before I was registered. He lowered his voice to a barely audible whisper and said ‘have you ever done a HIV test before’? Oh, I laughed, only one million times over the past 6 years. I saw that put him at ease, so I told him about my referral. About the same time he received a call from my doctor on the intercom who told him what tests to do with me.

he said he had to do a test to confirm I was HIV+, first of all. I wondered aloud if there was a possibility I wasn’t. He said some tests could be wrong and give  false results. I told him that in that case I would become a billionaire just by filing lawsuits. Unfortunately that was not to be as the test proved what you and I already know. Now, the real tests had to be done.

As he was drawing blood he began to chat to me. I really do not remember the particular details but I remember that he kept complimenting me. I did not look my age, I was quite cheerful, I was very pretty, etc. At end of it all, he told me my results would be out in a week and gave me his number to call to ask what my CD4 count was just in case I was curious. He also gave me my next appointment date, to come for the next blood test, As I left he told me I was doing very well. That really made me happy.

After the test I went back to the doctor who told me I needed to see a nurse. He described the person I was to see and it turned out it was the lady who had been asking me questions downstairs previously. She led me to her office. Once in, she began to ask questions about why I was there and my treatment so far. I explained the whole LUTH story and she understood completely summarising it as I needed personal care. I warmed up to her instantly. She then explained what the next step could be if my CD4 was low. It was the usual and much needed counseling given before ARVs are dispensed and I was finally certain I was in the right place. After counseling about the right way to maintain health during drug use she counseled me on how to keep up my health to avoid ARVs in the first place. Healthy eating, healthy living, close and critical attention to immediate and remote causes of illnesses in my environment, avoidance of stress. I was surprised she said these things because I had long suspected that they could contribute to health but I never realised they were very essential. He gave many examples of her patients who were extremely healthy and not using ARVs, just because they stuck to a healthy regimen. Then she said those same words ‘ you’re doing very well’. I was so happy to know that what I was feeling inside was not reflecting on the outside. She read my weight and blood pressure and then sent me back to the doctor.

I had to sit with the doctor for a short while so he could fill in my details in a new case note. I noticed several forms on his table. One of them had a list of the drugs and treatment lines that could be administered to the patient. I admit I stole one when he wasn’t looking. And then a curious form titled ‘Hospital Depression AND Anxiety Form’. That had a scoring guide ;

0-7 Nil

8-10 borderline case

11+ Case

I filled it and I am certain that I was either at the high end of Borderline or I was in Case. His expression betrayed nothing. He then asked the necessary questions, name, age, health history, etc, and I became a bonafide member of the centre. I was free to leave until the test results came out.

Unlike LUTH, where I would be up before the roosters to go to the clinic, I was advised to come for my results by about 12 noon. It took them a little while to find my file as the lab guy had just left for the hospital. Finally it was found and the doctor told me my CD4 count. 533. I was shocked. Apparently, whatever had been reducing my immunity had abated, and I was even above border-line. In other words my immunity had risen so high I was ineligible for drugs. Again. I had no doubt that stress had been practically killing me before.

There was a spring in my steps as I left the clinic. For the first time in a long time I felt very in control of my health and very happy with my life.

 

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Dreams Do Come True ( Do I Have A Story For You!)

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I had said I was okay but I was not. There was no day that went without my agonising over what to do about my reducing CD4 count and the dreaded LUTH visit. It didn’t help that I also seemed to be losing weight rapidly without any effort. Previously tight clothes were becoming loose-ish and people were noticing. I met an old school classmate who remarked to me that I was no longer ‘Fat Joie’ at which we all laughed, but inside I knew the truth. Then, shortly after my lips went black, I fell ill again…

It was in this state of ill-health- which I strongly suspected to be malaria that I began a frantic search online for help. The relevance of the fact that I reached out to a man on Facebook who I discovered because he chose to come out of the closet with his sexuality ( he is gay) and his status (he is HIV+), is not lost on me. I could not reach him personally as direct messages to him were unanswered but I followed a link that he had on his page and sent out an SOS to a website with a strange URL. This was on a Friday or Saturday. (I am concealing a few details because I do not have their permission to reveal their information yet. Also, they deal with a very sensitive area of HIV treatment and prevention so I have to be careful.)

The following Monday, about 9-ish, I received a call from a strange number. The caller introduced himself, and then probably daunted by my coldness and no indication of recognition, asked if I had sent a message to them. Then I remembered and relaxed. He wanted to know what made me tick the depressed/suicidal option, so I told him how I had been going to LUTH all these years and suddenly got the dreaded information but was unwilling and afraid to begin treatment with them. He understood, and asked if I wanted a more private, personal place for my treatment? I said ideally I wanted a change in the Nigerian healthcare system but, yes, I craved private treatment (you see how I can misyarn sometimes). After explaining to me the importance of adherence to the drugs in the treatment process he said he would speak to a community health centre that they worked with to see if I could be admitted in and he would call me back. I said a quick prayer and then forgot about it. True to his word, I received an email about 2 hours later with contact details for the hospital, a contact person and his own contact. I could not believe it.

I was supposed to go within that week ( last week) but because I had to gather funds for transportation – and because truth be told I was afraid of being disappointed- I put it off till Friday. I was told by the contact person there, however, to come either on Monday or Thursdays as these were the days when tests could be carried out, so I put it off till Monday this week.

On Monday, I reluctantly woke up really early and headed to the clinic by about 5.45am. I was lucky to find a taxi driver who knew the way to the place so save for the horrible traffic jams caused by fuel queues, we arrived there without incidence.  I was uncertain if I had arrived at the right place because this environment was so not what I was used to. At the gate when i asked for the contact, the security guards ushered me in and offered me a seat, apologising that she had not arrived and that I was a bit early. The exterior of the clean, white, three storey-building was paved with interlocking tiles to which care was definitely taken as they were very neat and had no weeds sprouting inbetween them. As I sat I saw a few members of a janitorial service come in and out of the building, obviously performing the chores before the staff arrived. One of the men who welcomed me called the lady I was in contact with and then informed me that she said that I should be processed once the office was open for the day. The man then informed me that there was no electricity so when the janitors were done, they would turn on the generator and I could go in. By then some other people had joined me in the wait. A few minutes later, at about 8am we were told to fill the visitors’ book and then we could go in.

The community health centre is a small clinic tucked in the offices of a multinational NGO that focuses on the health and well-being of specific groups of individuals in society including young girls and women. That is all I can say about that for now. However, its being a multinational explains why the interior was a pristine, modern reception with a television and water cooler. The receptionist processed our details according to how we arrived and gave me the number 2. She then told me to go up the first flight of stairs and wait for the doctor who would attend to me before anyone else. I missed my way and went to the wrong seats so the doctor was having a quick breakfast when I finally located him and I was told to come in in 5 minutes.

The doctor was a very young man, a little too young for my judgmental standards, and he had a bored/distracted look on his face as he listened. This was kind of the same look I had seen on medical staff in public hospitals and for a brief moment I was not sure if I had just jumped from frying pan to fire. He asked why I was there and I told him how I was referred by the people on the phone, how I had been living with HIV for 6/7 years and how I had been attending clinic in LUTH. When I was done he wiped his face with his hands, sighed softly and said there was no problem.  He then explained how this clinic was just a small service sponsored by USAID and some other American donors, and as a result it worked in conjunction with a nearby major hospital in the case of emergencies or admission. He said because of funding they too did not offer every service for example they had stopped doing the viral load test as well. He was surprised to find out LUTH had stopped theirs since 2010. He then explained the process I was expected to go through when I was taken in including the counseling and testing, then he said something that made my heart drop; ”you will need to bring a referral letter from LUTH”. Because it was obvious why he would need it I did not ask him why he wanted the referral what I asked was if I could just skip that part and start afresh like a new case. He laughed and said no. He did not think asking for a referral would be a big deal to the folks at LUTH and even if it were he consoled me with the fact that that would be the last time I would have to go there. So, dragging my feet, I unhappily left the clinic.

I knew that as I was going to LUTH on a day 2 months shy of my appointment I would have to go as early as I did for my appointment and go through the process until I was brought to a doctor who would attend to me. I also felt that it was necessary that I saw a doctor who was relatively patient and would not give me problems in drafting the letter. I could not go the next day as Tuesday is specially for children so I went very early on Wednesday.

Despite my arriving early I did not place my card in the queue, instead I chose to wait for the matron, who I knew would be there already, and explain to her, which I did. She took me into the room, very concerned as to why I was leaving and sad too because she had a fondness for me, she wanted to know exactly where I was going down to the address. But after I had explained it to her she said it was for the best but she would miss me. She then took my vitals and got someone to retrieve my file then asked me to sit with the other patients. While we sat outside waiting for the day to begin people came to speak. The first lady, a nurse from another department, spoke about free cervical cancer screening for HIV+ women. The next speakers were our matron and one of our nurses. They were unhappy that it seemed the infection was not diminishing especially in newborns. They said based on all the work they were doing and all the time they were putting in there should be no more children born with the infection or contracting it from their parents, but there were. Parents because of stigmatization would not give the babies the required drugs after birth and to avoid prying eyes they would breastfeed, things which were strictly forbidden. Some spouses were still concealing their status from each other. etc. Then it was time to go in.

Luckily for me, and thanks to the matron, my case note was placed on the desk of the doctor who I saw previously. She was the most civil one. As I waited my turn to see her, the amn in another queue got up to see his doctor and I heard her say very loudly, before he even sat down’ do you have your money for your test today’. His response was inaudible and because he was so close to where I was sitting I knew he did not speak up because he did not have the money. Then it was my turn to see the doctor.

What is your name? She asked without looking up. I told her. She raised her head and looked at me with a slight smile, and asked so are you ready for your drugs now. I smiled and just as I was about to say yes, she said you are not. I said I was but I wanted a referral. She was shocked and asked why. Then it seemed as if she caught herself ,  she shrugged and reached for the referral  paper. Then she asked again why I wanted to leave. I asked her if I could speak freely, she said I could. I explained to her that after my last visit I had cause to think about a lot of things and that I realised that LUTH was a deterrent to my adherence to a treatment regime. Why she asked. I don’t like being here, I dread coming here. You are the most patient doctor here but if you are not here then I just take any treatment I see. I told her I needed personal care. She nodded in understanding saying she had been telling her doctors to be more attentive but she could only do so much. As she spoke I wondered how anyone could wonder why someone would want to leave the centre. She then filled out a form and gave it to me with instructions to make a photocopy and bring it back to her.

I had to walk quite a distance to get to  commercial photocopy centre. By the time I came back she was attending to a very sick patient.She told me to sign on the photocopy that I had received the original and give it to her. I had to sign this at the desk of one of the nice nurses. ‘ You’re leaving us?’, she asked. I said I was. After explaining why and where I was going to she said she was going to miss me because she was always looking out for me, their patient with swagg. She said she like the way I dressed and the way I spoke. I was amazed that people actually noticed me.

After dropping the copy of the letter, I said my goodbyes, took personal details and just like that I was out of LUTH treatment centre.

(to be continued)

Hello Everybody

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I was reading through past posts and I just realised how much of a supportive, kind community I have here.

Sting, Owi, Toinlicious, Jemima, Sykik, Moi, Uche, everyone, thank you so much. I am grateful for you all.

Let’s Talk About Sex, Baby

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It is amazing how sex is a relatively taboo topic among PLWHA ( or at least seems to be). Considering that a majority of us acquired the disease through sexual intercourse one would only hope that there would be a little less mental restriction on the subject, but in Nigeria? No way! Even pregnant women are expected to act like virgins here.

Sex is a very important part of the lives of people in this country, both those living with HIV/AIDS and those who are not. It is because of sex that many people refuse to either disclose their status or just refuse to get tested. Naturally, the other peripheral issues pop up like ‘can the illness be treated‘ , ‘will I die from it‘, etc,which are generally already answered by treatment and care, but the main question ‘will I be able to maintain my current lifestyle‘, is not. Lifestyle in this sense really means a carefree, vibrant, sexual life which is usually not a looming possibility when those three letters are confirmed in one’s life. Or maybe I should qualify that; carefree, vibrant sex is not a possibility when a woman is confirmed HIV positive. I will explain.

Before I realised what / who I was as an adult, I was very aware of my sexuality. As a matter of fact, my sexuality was the one thing I knew how to manipulate. The reason for this was the sexual abuse I endured as a child and which I have spoken of in earlier posts. Before I understood its intricacies I had sex because I felt it was the thing to do; I would lie there, silent and quiet so my boyfriend would be happy and like me. I would sometimes cry afterwards-or pretend to-just to indicate/ascertain that I still had a lot of virtue left in me regardless of my knowledge of this act.

When I became more aware, I had sex in exchange for- or as a sign of- love. A barely-existent self esteem ensured that I was always looking for love (read:self-acceptance) in the arms of my lovers, and confusing lust for it. So offering or accepting to have sex was my way of securing that ‘love’, and I learnt to be very good at it, to keep them interested. (It is funny because in retrospect, those are men I would not even give the time of day at this point in time.) Eventually, sex became a very important tool in my relationships to maintain the interest of the partner at that point in time. Which is funny because

In all that time, never once did I have sex because I wanted to, at my own volition, or on my own schedule.

And this is the crux of the matter: Nigerian women (generally) rarely, if ever negotiate sex.

My evolution to overt sexuality, dramatic as it seems, will not be very different from that of the average Nigerian girl. Granted it may not follow the same trajectory and/or lead to the same open-endedness but be assured it usually begins the same way; sexual abuse in childhood that leaves her vulnerable to other partners and searching for answers in, through and with sex. More often than not. Add that to the fact that she is brought up conditioned to satisfy a man’s needs and you have a serious issue on your hands.

My point is that unless women start speaking up for their rights things will never change. And these rights include the right to negotiate and initiate sex. Think about it, a man who is diagnosed HIV+ can still score a wild night of sex with a  strange,smitten girl, no questions asked, primarily because girls are not encouraged to ask questions or to say no. But what is the likelihood that a woman just walks in on a stranger and successfully encourages him to ditch the condom for that night? Many ladies will tell you that they usually have sex despite their misgivings, even when all they wanted was to just talk or cuddle. According to the law, can a man rape his own wife in Nigeria? I don’t think so.How many women carry condoms just in case?  And how many women can go to see their boyfriends and successfully get away with not having sex, if they are not in the mood for it? How many actually even know that they can say ‘no, not today’. Otherwise strong, powerful women become weaklings incapable of determining their reproductive health because of conditioning.

I have a very strong interest in the nuances that lead up to a woman being diagnosed HIV+ in Nigeria. I feel that if we change the conversations we can have less women living with or being vulnerable to the disease. Nigeria is experiencing one of the fastest growing epidemics of HIV/ AIDS in Africa, believe it or not. Unfortunately a large percentage of these people are women. Women empowerment is not just providing women with a source of income and the voice to stand up to an abusive partner. It is also about encouraging young girls to love and respect themselves, and hold their bodies in high esteem. This is not to say, in anyway that only men enjoy sex, but it is to say that the idea to have sex should be a personal, safe decision; as easy as choosing condoms over the morning after pill. I mean forget the morality of it, casual sex or no, your conversations about it should begin with questions about sexual health and in an ideal world be as aware as this article recommends.

Discovering my status was devastating for my identity and I can see now how many ways I fought to pretend to myself that things had not changed. I had learned to wrap myself and my worth around this sexuality and being HIV+ meant that I would have nothing, be nothing. Even less than nothing; I would be avoided and loathed. And even if they do not , you see yourself in the light of sex, as a disease waiting to happen. It explains why a lot of women at the clinic have that oppressed, resigned air and look. If they had children before the diagnosis then their lives are over as far as love is concerned. If not they seek companionship from a pool of equally flawed candidates; men living with the disease as well. Chemistry is not an option except it has to do with the components of ARVs. And God knows what other compromises they have to make sex-wise: don’t do this, only do that. These are the choices that face us, that or risk being insulted over and over when you meet other people and tell them the truth.

But it doesn’t have to be that way for every woman. And it begins with the girls.

Aaaaand Scene

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I’m back.

    • The storm is over.
    • The cloud has lifted.
    • I am going to fight again.

You already knew this was coming didn’t you?

I am giving life another shot. I have to; I’m here aren’t I? For some reason the cloud lifted today and I became excited again about all the things I am dreaming about. And just like these things happen, the first post I read was about the power of positive confessions.

My daughter called me this evening. This is rare because she never calls or even agrees to have a conversation of more than 2 seconds on the phone. She regaled me with her latest discovery including the fact that one of her teeth had fallen out. I asked her to take a picture.

But you’re not here, she complained. Yes, I will see it when I come , I answered. How long will you come back, she asked, (meaning how soon I would return). Very soon, I said. What are you even doing in that Lagos? I said that was a question even I had problems answering but that I was trying to make money. And when you make money you will come back? Yes. Okay, buy many things and everything for me,  because I love you. I said ok but she repeated ‘because I love you’. I said I loved her too.

But I heard that conversation differently. It was not just my 5 year old telling me she missed me, it was my purpose nudging me to carry on. There is something, someone to live for, to be successful for. Ignore the present situation and keep walking. Things will happen.

I thank God for every misstep and wrong decision that led me to having that child, to bringing me where I am.I think I have mourned who I could have been enough. Now it is time to live out who I can be.

The Battle Is Not For Our Bodies, It Is For Our Minds

Joie

Without Missing A Beat

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My lips turned black today. I say today because it only showed up today but it began on Monday to be honest.

After the verdict from the hospital, I went on a death-by-junk diet. And knowing what my financial situation is like, junk food comprised cheap biscuits (cookies) and coca cola. Imagine living on that all week – actually more than a week. I figured I would not put on any weight since the bloody thing seems to be reducing by itself and that I am already at risk for falling really ill so ‘what tha heck’. Then this morning my neighbour’s daughter exclaimed that my lips were black! I went to look in the mirror and truly that is what they were/are.

I admit I was a bit frightened at this discovery – this rapture was happening faster than I anticipated- so I went to google black, chapped lips in relation to HIV and came up with nothing. But it yielded many results for dehydration and reaction to the benzoic acid in sodas when consumed in large amounts. And add that to my coloured natural hair which in twists look like fat dreads and I could very well be mistaken for Fela’s offspring. Or at the very least, hisprotege.

I intend to take care of myself eventually, so I will cut out the sodas for now. I understand now that my lowered immunity is not some failure on my part but as a result of the malaria I suffered in December that almost wiped me out. And there were a few signs that I had become weak but I ignored them or tried to overcome them.

I have been watching the series Breaking Bad. (Yes I am one of those people who waits years until the noise has died down before I see a movie.) It is quite gripping, and I am inspired by Walter White, not because he keeps giving life a shot despite the issues- I see that cliche in everything- but because he really has gone past the point where he gives a shit. I want to get there. I am though, very gradually…

S**t Just Got Real : LUTH Chronicles, April 2015

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(Long Post Alert)

It was supposed to be a normal day in the life of HIV positive Joie. Hospital day, I would leave home by 5.30, wait 3 hours to see a disillusioned, disinterested doctor who would ask me routine questions and give me the date for my next visit,  usually 3 months after this one.

If there was any inkling that my day would be somewhat different from the regular hospital visits i was used to, it would have been in the fact that my taxi guy came late even though I called him a little over 20 minutes before. I was enraged because I hate to be late to the hospital. The number of people that are there by 5am is unbelievable and I just want to go in and leave as quickly as possible, to make the process as painless as I can.

Anyway, I arrived there a few tens of minutes shy of 7 am and proceeded to wait as we usually do. I noticed though that I was uncontrollably sleepy, something that never happens to me. I was a bit bothered about it  wondering if it was due to my inactivity in the past few weeks.( I sustained an ankle injury while running and continued working out with it until it became unbearable so for the past few weeks I have had to avoid putting any pressure on that leg.) One of the goals I had set for myself mentally was to be at least 4kg lighter than my last weigh-in at the hospital. I had fallen really ill the month before my last visit and I lost a lot of weight so I wanted to maintain and even improve on that.  But I had not really put my mind to it as I was eating practically indiscriminately, so I was also scared that added weight might be causing my general lethargy.

They started off really late at the clinic; around 9 am. Maybe there was another doctors’ strike, maybe because there was a power cut – and we all know they do not work if there is no power, even if it is clear as day- or maybe because they felt like. I don’t know, only Jesus can tell.  We were ushered in to be weighed by a polite, young gentleman. He referred to the patients as ‘Mummy’, ‘Daddy’, ‘Aunty’ and ‘Uncle’ out of respect. I  caught myself wondering when he would be taught the ropes and become rude to everyone.  I was quite surprised when I stepped on the scale, to discover I had lost another 3kg. I did not doubt the scales because my previously snug, now slightly loose, clothes had given an indication, but I was taken aback since, based on my diet and exercise the few weeks before, I had little reason to lose weight.

The kind, elderly matron, who seems to have taken a liking to me, took my case note out of the pile and dropped it on the table of a doctor . This doctor is probably the nicest and most thorough in the clinic but that is not saying much considering the competition is minimal. My being attended to by her proved to be a curse and a blessing on the long run.  As I waited. I observed quite a few people in very chronic stages of the infection being helped around, ostensibly by relatives. These people, were in the stage referred to as ‘wasting’, they had experienced extreme weight loss, they looked pale and gaunt, and seemed too weak to move without aid, or even to speak loudly. I wondered which of them had become like this because they had to wait for drugs or because they were in denial. There was a particular gentleman who was very tall and light-skinned. In his days of health, he probably would have been seen as attractive to women who liked fair complexioned men. He had a tattoo on his arm. I began to wonder if he had been a ‘playboy’ if he caught it through promiscuity. Can you imagine? I, who am in the same shoes was attempting to judge him?!!

I had to wait quite a while to see the doctor as there were several people ahead of me, and I wondered if the Matron had actually done me a favour, especially because  I saw the other people I had been in the queue with, being attended to quickly. Finally it was my turn, however. The doctor opened my case note and began to tick off the routine things they always do, then reminded me that on my next visit would be for the routine blood testing. The reminder was because these tests now have to be paid for by the patients. I then asked her what the results of my last test were. She checked her computer, then smiled in a weird way and said the last words I ever wanted to hear ‘ you are now eligible for drugs’. Apparently my CD4 count had dropped considerably so I was now at risk of wasting eventually. Ironic isn’t it. I was now a bonafide PLWHA.  I felt like I had been given a death sentence. All I was thinking was ‘hell no!. Not today’. The doctor then asked ‘ are you ready?’. I wondered what for. What was the procedure? Would I be required to pay? I needed some sort of guidance into the next step and this was where it got… interesting.

I asked the doctor how I was supposed to be ready. Mentally? She said yes. If I was ready she would send me to the counselor, and when I was done there I would come back to her, and she would write  me a prescription for drugs which I would go and queue for, then I would go home and come back to see her in 2 weeks. I told her it was the ‘long story’ that would put me off but I really needed her to explain why I needed to be ready. What exactly about prescriptions required that  I prepare my mind, what prescriptions she would write for me, etc. But I felt under pressure to make a decision, like I was wasting her time. So I told her I was not. Not ready, not today. She said it was fine and then asked me if I wanted my appointment at the regular  time (3 months interval). I asked her what she advised. Again, she said it was up to me.  I was perplexed. There I was deeply troubled and confused and this doctor was just treating it like it was not her concern.  I asked that I see the counselor regardless. I needed to understand a few things and even though I had a little more than an inkling of what the drug regimen would involve, I wanted someone to assuage my fears and provide clarity. The doctor filled out a counseling form for me to take along to the session.

To appreciate my anxiety, one must understand the  treatment process for HIV/ AIDS. The drugs given to PLWHA are called Anti- Retro Virals (ARVs). These drugs are EXTREMELY TOXIC  and so have to be prescribed in a specific manner and taken RELIGIOUSLY at the same time everyday for the rest of your life.  If one deviates from the routine of taking it it can render the drug ineffective, cause the virus to multiply and require that the person be put on a second regimen. There used to be 3 different  regimen ( or lines ) of treatment, which were administered to the patient, in succession, if the previous one failed. (It is a regimen because ARVs are never one drug only, they are a combination of a few drugs.) If the 3rd line fails then there is literally no hope for the patient. The expected outcome of the treatment whether 1st, 2nd or 3rd line treatment is that the patient’s viral load reduces drastically and the CD4 count increases. CD4 does not increase in impressive amounts so it is really the viral load that one needs to be concerned with. However, since 2009, the LUTH centre has not conducted any viral load tests for me and many of us. I was told in 2013 that, when the clinic got burnt in 2010,  the reagents – chemicals used in the lab- for that test was destroyed. As a result, when they rebuilt they had a backlog of viral tests to run and stopped accepting any new cases. The implications of this are obvious: how do you really tell that the drugs are working?

Also, the toxicity of the drugs were a cause for concern for me. ARVs are very toxic to the system and can cause a lot of issues in the body when taken. These issues include rashes, nausea and vomiting, diarrhea, higher risks of cholesterol and hypertension issues at the very least, to more serious issues like psychiatric disorders (hallucinations and so on), internal bleeding, issues with the nerves, kidney ailments, inordinate distribution of fat in strange areas in the body, and so on and so forth. While some of these side effects show up immediately and balance out, some do not show up until years after.  Another reason for my concern was that I had been given some ARVs -albeit wrongly– both of which seem to be regularly prescribed for patients. I wanted to know if that mistake meant I had developed a resistance to those drugs. I also wanted to relate to the doctor my reactions to the drug at that time.

My third cause for concern was – or is rather- finance and timing. It would seem that with this development I have to be at that dreadful clinic as frequently as every month; I cannot describe how much I  dread, loathe and fear that. If the inconvenience was the only problem it would not be an issue but that frequency of visit also requires money. There are monthly tests that need to be done to check organ functions especially the liver, and under this new FG scheme patients pay for these tests. All these in addition to the transport fare to and from the clinic. And then the dietary requirements as people on ARVs are meant to eat heavily and very nutritiously. Anyone who knows this blog knows my struggles with making up my cab fare not to talk of making ends meet…

I was happy to see that there were just a few people waiting for the counselor. I sat down to wait with the hope that I could express my fears to her and that she would listen and provide me with clarifying responses. After waiting for about 30 minutes, the other two gentlemen who were with me went in one after the other but quickly came back out. She had told them to wait. I was told by the more elderly of the two that there was a patient in there but that I should at least look in and tell them hat I wanted. I knocked and popped my head round the door. In the cramped room, there were two ladies sitting at desks opposite each other, and in between those desks sat two men on a bench. One of the men was the light-skinned guy I spoke of earlier, and the other – I imagine- was his assistant/relative. I said hello and the other lady who I did not know told me to ‘just go and wait outside’ without asking me what I wanted or telling me who/what I was waiting for. Thus began a number of hours of waiting. During this time, the patient had left the room and the two ladies were heard conversing and cackling loudly. At some point the counselor I knew actually left the room with a visitor and came back a while after. She left again alone and was seen exchanging anecdotes with the doctors. The elderly man asked her what we were waiting for and she said she was ‘coming. She did this several times. Finally the other unknown lady left the office. As she was leaving the elderly man again reminded her that we were waiting. She said we should wait because she was not the person to do the counseling. She went further and said the counselor wanted a lot of people to gather so she could give us a class. It didn’t matter that  we were just 3 there, or that we had been waiting for hours or that the other people we were waiting for had not yet seen the doctor or done their vitals or anything. The counselor was tired of talking, period.

I noticed the elderly man had a prescription form and I began a discussion with him. He was sent to the counselor because he had stopped coming to the hospital for about 7 months and in turn stopped taking his drugs. The whole monthly thing was tiresome to him, he complained. I asked what taking the drugs felt like. he said he had never seen anything like that. There was a particular drug he was told to take only at night and, whenever he took that drug he would begin to see things; people who had died a long time ago, spirits and ghosts. He said the whole situation was very frightening for him so he bought a blood tonic and took that as he took the medicine and gradually the visions disappeared.

I had heard enough. I decided that it would actually be better to go home and google this issue than sit endlessly waiting for someone who had no time for me, anyway. I left the hospital but as I went I could not help wondering how much time I had left.

But now, I am worried and very scared…