Ten lessons I had to learn while living my first year after Nick Domitrovich's reagent HIV diagnosis
Opposed to the lessons that I, Cláudio, have been learning for more than two decades.
I'm going to gray
Last year, on December 21, 2015, my doctor called me at work to inform me that I had tested positive for HIV. And so, my whole reality changed.
Physically, it was a quick and very direct trip: I saw my doctor on the 23rd, did additional blood tests on the 24th and started taking antiretroviral drugs on the 25th (Merry Christmas!)!
I received final confirmatory results on January 5, and by February 12 I had an undetectable viral load - which I have maintained since then, due to the adherence and draconian discipline with which I conduct my treatment, my diet and medication intake daily.
At Casa da AIDS, where I treat myself, the goal of taking the medication is 95%, a nurse informed me that I consider my sister at heart; and she, when she saw me doing math, said that, in a month, it is _acceptable_ the loss of an outlet. I consider a delay of more than an hour unacceptable and this causes me to tectonic control my wife's medication and maybe I am developing something for this site that will be good in many aspects, and in this one, especially!
But this is not about my physical journey. There is a lot written about the physical aspects and medical developments of HIV, which I encourage you to read on this website, seropositivo.org, which has more than 540 public pages and about 4000 archived, and you can, if you feel you should, look for me .
About immunological window I recommend the texts that are in this link (this link has more than a dozen other links, all pointing to relevant and important aspects for anyone who wants to understand, for whatever reason, this thing so badly treated on the WEB, with writings by sadists; and also by idiots and homophobic - in theory, repressed fagots, without the courage to come out.
If you are worried about it, you can also search the same zap where I found life and heard personal stories from other human beings that can be especially useful for my emotional healing in the weeks, months, months, years and decades after my diagnosis. .
Sometimes counted in seconds, lined up, one after the other, and those who know the Work of Machado de Assis know well what the rhetorical figure of the devil represents with two bags, one full of coins and the other empty, where he passes the filled to emptiness while saying: “too little”…
The circumstances of each individual are different, as is their personal reaction to learning their positive status.
In writing this, I do not intend to represent anything but my own personal acceptance story.
In sharing the lessons I learned over the first year of being positive, I hope to accomplish two things. First of all, I would love to be able to help someone who may just be learning their own way in living with HIV or AIDS, or who has a family member with HIV reactive status.
When I found out, I had no close friends that I knew were HIV positive. But an acquaintance, who is now a friend, had appeared a few months earlier on Facebook and he is HIV positive, so I looked for him to see if he would be willing to have coffee. He heard me and then shared his story.
Throughout this year I went back to that first conversation many times and found comfort in the fact that many of the emotions I was feeling, thoughts I was thinking about, or experiences I was having were experiences shared with this man and certainly other people.
Although the author “forgets”, and I mention, also the women, sometimes contaminated in the first relationship, with a bullshit, a sacripanta who asked for a “proof of love” (disgust) and who ended up at Rua da Amargura or Amparo (sic) Maternal, as well as wives, who believed they were “safe”, because they were in “a marriage”, “and a stable relationship” or who simply let their guard down because they loved that guy and ended up discovering ten, maybe six years later in prenatal care, and her husband called her a slut, Or as Amarilys, in memoriam, who had the greatness of maintaining an open relationship and all she asked the guy to do was to use a condom and she only found out nine years later, in a preoperative period, where a candidiasis was detected RECURRENT.
Secondly, I hope to continue to open the dialogue. Although we have come a long way in the past 35 years in the fight against HIV, there is still a lot of work to be done, no less important than educating and continuing to fight stigma. So, without further ado, here are ten of the lessons I learned during my first year living with HIV.
1. The remedies are really amazing!
Okay, so I lied. I will make a statement about medical developments.
I knew that the drugs had come a long way, but damn it. My doctor, who is also an HIV specialist, put me on this new HIV drug, Genvoya, a single derivative of a previous drug called Stribild, but with less potential side effects on the kidneys and bone density. Genvoya had entered the market just a month ago at the time of my diagnosis.
Genvoya is a fixed dose tablet combining 150mg of elvitegravir, 150mg of cobicistat, 200mg of emtricitabine and tenofovir alafenamide 10mg (TAF). It is manufactured by Gilead Sciences.
Elvitegravir is an integrase inhibitor. Emtricitabine is a nucleoside analog reverse transcriptase inhibitor (NRTI) and tenofovir alafenamide nucleoside is a reverse transcriptase inhibitor (NtRTI). These drugs help to prevent HIV from replicating, in a literal process of enslaving the cell until it, exhausted, dies and the antibodies and other representatives of the immune system gradually and gradually decrease the amount of HIV in the body; that is, making the viral load undetectable (I still want to touch on these two points, the undetectability and non-transmissibility, which has been the nirvana of many seropositive young people who, believe it or not, stop the medication, leave the ambulatory because, undetectable… (…)… They are not transmitters). Cobicistat is an agent used to increase levels of elvitegravir. It has no anti-HIV activity of its own. Genvoya offers a complete combination of anti-HIV drugs in one pill.
I took DDI and, in the package insert, which I no longer read, there was a very interesting side effect: “Fulminant pancreatitis”!
Genvoya received marketing approval in the United States and the European Union in November 2016.
The standard dose of Genvoya it's a pale green 'tablet' once a day, food intake - I I always wonder how a homeless person can maintain this routine, in synchronic way, of eating and taking medicines well fed. I did this because I lived on the streets for five years and, sometimes, I could not ask for alms out of shame and not even a bread I had to eat-. It is licensed for use by adults over eighteen.
It was so new, in fact, that my doctor had to give me a handwritten prescription, because it wasn't even in his system. I felt very much in trend with my medication!
I take the pill once a day in the morning, and unlike older remedies, this one also had limited very visible side effects, especially some minor digestive problems that wore me out in the first month.
Editor's note: This is not everyone's reality. There are people who take seven pills in the morning and eight at night. And not everything is this pink ocean, with lilac begonias. Yes! I take four drugs for HIV in three pills once a day HIV! Two injections of Clexane, an anticoagulant, to cover a cross side effect between the eternal vasculitis caused by HIV and a genetic propensity to clot formation. I already suffered several thrombophlebitis in the left arm and the nice name for it and “recurrent thrombophlebitis ”) a property of my organism that led my then vascular surgeon, Dr. Cinara instructed nurses to collect material (blood) for examination that did not use the veins in their left arm, this has been going on for ten years. Yes, for ten years I have only been collecting and collecting blood from my right arm and the veins are running out, so calloused, punctured, often by nurses who seemed to suffer from Parkinson's disease (...). The other THING, awful that I became a signatory at the club, is the Repeating Deep Pulmomar Thromboembolism - opens in another tab - (I had two and I make my medical history available for download here, in this link
As I am, what would you say, old man of war, with 22 years of HIV infection on 29/04/2017 (yes, maybe you who are reading me are younger than my lifetime with HIV (…) ) the “things”, maybe, and just maybe, are not so simple and, just to shed light, this point: The first medication I took, around 1995 was AZT. The Bull was clear. 6 pills every 4 hours, even if it meant interrupting the patient's sleep. So far so good, the vomiting session was hard after each pill “take”. I looked at the Nordic God who sat in front of me each day and told him. I stopped with AZT. He said, "Okay, life is yours." I replied that it was exactly that and, if I had to die in six months, I would emphatically prefer to die them without vomiting. He spent the second dose of prophylactic drugs against tuberculosis (I lived in a support house that was a focus of TB), I left the room, spent in the pharmacy and it took me over five years to vomit again, only, in this second stage, it was a matter of learning, because I had reached the fearsome, scary, dark and unbelievable 149Kg and I had to have a gastroplasty. I have a photo of Facebook that I will post below to everyone's horror.
2. In addition, as I mentioned above, I had become undetectable within just over a month of being on medication, thereby reducing the damage that the virus can do to my immune system, and making the likelihood of my passing from the virus to anyone else almost insignificant (editor's note: Reckless thinking… Read Viral blisters).
Due to health care and a Gilead-sponsored copayment program (the same that helps cover the cost of Truvada, the drug currently used for PrEP), I pay $ 0 for a drug that would cost $ 3,000 / month. diagnosis right after seroconversion, which was only possible because I had tested myself regularly. And since my doctor started my medication immediately, he indicated that I should live an absolutely complete, long and healthy life. In fact, there is a good chance that I will never see any real physical effects from this virus.
I know it's not like that for everyone, but Amarilis, who has been reviewing this site for many years, had a CD4 count above 900 (…) Amarilis had an undetectable viral load and an undetectable viral load (I sometimes think you see this as the “Grail” - I heard something from the mouth of a doctor who left me, perplexed, before an attitude - with the forgiveness of the bad word - reckless, but I will deal with that later, but for now I suggest you read something about “Viral blisters and breaking, this one”) Victim of an opportunistic disease, a Lymphoma Non Hodgkins (now known as Burkit lymphoma; in this case, a neoplasm, which is a euphemism for brain cancer! A hit on all of us!
You can't rush your healing
So, you can dream about it and stick to the reality that we have the virus, we live with the virus, however, we will not necessarily die because of the virus or the opportunistic diseases says Alice. Any of my friends will say that I love scheduling. Five-year plans are as natural to me as breathing. So, of course, when I found out I was positive, I immediately planned on how I was going to deal with it.
It was as follows:
- January - Allow me to be sad. Digest everything. Classify emotions. Drink them all.
- February - Take the pieces. Move on. Start yoga. Do not drink.
- March - Back to normal.
I, Cláudio Souza, depended on charity another girl of programs, that does not understand this, lea here
She gave me what she could, and I don't even know if she could. I don't remember her face, because I was so ashamed that I could never look at her face and in the middle of all that tsunami in which I was being swallowed, drowned and crushed, I still have the image of a pair of black pumps and with shapely legs (yes! yes! i am practically incorrigible and only a very wise woman has the formula to keep me by her side and faithful for more than three years. i lived nine marriages. she lived together is married and the most short lasted 5 months, but the vast majority lasted three years with the betrayal started in the 23rd, 24th month.
Mara has kept me loyal to her for more than fifteen years, and if there was a time when the structures swayed, it was her that I asked for help (I was confused and I confused intellectual involvement with emotional involvement). On a beautiful Saturday I went out, called Mara, said everything that worried me and if she wanted me to come home and she said ...
- "Come back, let's talk". And here we are. I learn a lesson from everything and I learned to separate these two things and, if God allows me, that will never happen. I used the little money that she, the program girl could give me and I paid R $ 10,00 in a 5th hotel that was known as Gurgel, which was a high turnover (it was a pimping exploitation den, pow, and was frequented by transvestites)… I was seen going in and out of there and, although I have little or nothing to do with the way people live gave even more reasons for debauchery and scorn, I became cannon and even a great friend, someone I haven't spoken to in years, but whom I love as a brother, mentioned another person, as infected with HIV saying: "He is also infected". I didn't send him to the bridge that fell because he was and is very important to me, despite everything that was done to keep us from each other…
In exchange for what she gave me, I had breakfast while I tried to make my life, my financial independence possible, but I was only able to accept her help for just over five days and I remember I thanked her, kissed both of her hands and I never went back to the place where she was, I saw that she waited for four buses to leave, and on the fifth, she left, and I never saw her alive again. I sincerely hope that she can read all of this and know that she put the basic weight she gave me with apparently little, but this little bit has restored me and today, 22 years ago… I'm here
Editor's note: There is no cure, so there is nothing to rush. This very famous cure for 2020 (I want to burn my tongue and be wrong, but that is not what I read, see and hear in every serious place that deals with the subject or the AIDS disease) is something I don't know how it will be disgraced ...
Now is it for 21? “Grab the Torch ”? (“ Holding the torch ”)?
Is it a sporting event? Is it a joke? A feud? !!!!! Or a slot machine - I know I will never be called to an amFAR event and I don't care. I just went to see the Gran Circus Amfar
More than thirty-five million people died with the "torch in hand" and I saw how many and how many times they tried to change the protocol of helsinki, which says that the research subject, after finishing the research, should have the right and deserves it receive the best treatment available and these friendly and smiling people, I have the impression that they are all WASPs -White, Anglo Saxon Protestant - and they tried to change the treatment of the research subject to the best “available” treatment.
With that, we can imagine our dear Nick Domitrovich tomanod genoya and living well with his lenses, now blue, while the human covbaia that took all the risks, trying a drug that in God and the Devil together could predict what would result for this poor “Disinfiliz” there in Sierra Leone, taking cyborg for the pain of peripheral neuropathy and a combination of AZT + 3TC and DDI, dying slowly from AIDS or poisoning and, friends, there are at least another thirty-five million people Grabbing the torchs… Until when
Let's admit ... The cure appears in 2020. Where does it go? How much time does it take, time is money, to move these resources to the southern hemisphere, to the west and to the east?
Who is going to pay that? Why is that?
For today, 05/05/2017 I stop here. As a friend says… “Saporra is a killer”.
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And it was not within a "comfort zone"! This is a story that only I have to tell!
I was the first individual, a CPF, not a CNPJ to, in quotes, “Slap my face”!
For all that I lived, it all happened in a period still troubled by prejudice and, yes, there were prices to be paid.
The currency has always been that of social exclusion and I have even hesitated between continuing or not!
The great “IT” of all this is that without this work, I would have nothing left but leisure and I would certainly not endure it. I have a need to be productive.
We are Borg!
If not bored by the empty hours, at least by suicide due to the absolute lack of purpose that my life would have and the terrible impression of parasitosis that would come to affect me. So, I couldn't stop.
I had the opportunity to accomplish many things and, on the other hand, I missed several opportunities to do more, with a deeper and better reach.
Not everything is as desired. Let it rain (Guilherme Arantes)!
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