The Death Sentence....HIV

[Kengi]

I had a very hard time sleeping last night and this isn’t the first night this has taken place. I’ve been having really bad dreams for about a week now and sine then I’ve had a hard time getting to sleep or staying asleep. Last night I slept for about four hours and I’ve been unable to sleep since then. It’s 8:30AM on Saturday the 28th right now. I should be getting ready for this free Jazz concert that I am going to in Watts.

My stomach has been in knots for about a week now and my stools are back to being very watery and when I have t go I have to go. Twice I haven’t made it, but thanks to underwear Natalie purchased for me, I’ve been able to only have to throw away underwear and not pants.

Yesterday was such a great day. I got to speak with my good friend and former boyfriend who I dated for 11 years, I also had a very productive day at APLA with Tiana. My friend Jo even had the time to sit with me through most of my meeting with Tiana at APLA. After we left Jo treated me to lunch and I was able to really share some things that I haven’t been able to share with anyone. Things about the passing of my Pops and what it was like for me the last year of his life as well as the last few weeks of his life. This is something I haven’t had time to think about or even shed a tear over. I also got to talk about how I have protected Ma from all that is going on with me. Since she is so sick, I don’t share what is going on with me and now that she no longer lived close enough to me to even have a clue, I don’t get to see her that much. After lunch Jo and I met with me my friend Natalie over at LACMA for Jazz. Once again it was great and it was very cool to be able to introduce Natalie to someone I have known since 7th grade, but have been out of contact with since we graduated high school in 1987. It was so awesome and felt very natural to just hang out with Jo the nervousness I felt at first all went away as soon as I saw her face and her smile and felt her hug.

By all accounts I should be able to sleep. I mean I have a place to at least sleep, although it isn’t permanent it’s better then the streets and far better then Skid Row. However, all this week I really haven’t been myself. Even my picture taking has changed. I always have my camera with me, but I am no longer taking it out as much as I did before. I guess it is safe to say that I am very concerned about everything.

I’ve always been in control of everything in my life and now I am not. I am depending on people for everything. I have no choice. It’s hard to find a job, when you don’t know where you will be sleeping. In the words of Scott Rowland from ASC, “everything is temporary……you may be here for a week and there for two days” I’ve never planned my life to be “temporary” and with what’s been going on for the past 16 and have months that’s exactly how things have been. “Tempory” When I hear employees of agencies so things like “nothing is permanent, it’s all temporary” this sends a clear message to me that I am very much alone on all of this and very much going to ave to get through this alone.

It was awesome meeting with Tiana on yesterday (Friday), I feel like together we were able to get so much done in way of getting the ball moving. However, everything we set into motion is now no longer in my hands or hers. We are now waiting for people to call back, waiting for forms to be faxed and signed and then hope they wont expire prior to me getting the service that I need. One of the key things I have really respected and enjoyed about working with Tiana so far is that she is HONEST and puts everything on the table. She tells me the way things are and doesn’t give false hope like she is some miracle worker like others have done. For example, Scott Rowland from ASC told me that having HIV is “great” and a “blessing” because I was now speaking to him. But what was he able to set into motion for me. NOTHING, did he tell me about any other housing options like those Tiana and I went over. NO. He simply pushed Skid Row and when I asked about other agencies his response was “I don’t think you will survive that place.” Of the numbers he gave me to call I have only gotten a call back from who and they told me that Scott needed to make that call, they also asked if I had filled out their paperwork already. “I can tell you Mr. Carr that this is why the other places haven’t called you back. They wont call you back. You must be referred to these programs. Your case manager must call and Scott knows this.”

So this is just part of the reason I haven’t been able to get much sleep, when I feel so uneasy about things and why I don’t trust anything that comes out of someone’s mouth until I have the service in hand. It’s been 16 and half months of people not telling the truth, not doing what they are PAID to do and then everything falls on me. I am not the only homeless person dealing with these issues and I will not call them a road block, because I can get around a road block, but DEAD ENDS are just that. DEAD ENDS.

The other reason is HIV. HIV has been a complete nightmare for me, from how I was told to the way things have gone ever since. I was told HIV was a “blessing” and that so many options and services would be open to me. Jennifer Murry made is sound like she was such a “wonder woman” that everything would be a cake walk for me. She promised I would be in touch with both GR and MEDICAL arranged through her. She promised I would never get a bill for staying in the hospital and this all was untrue. She said bell Shelter was the ONLY place she could get me into since I refused Skid Row. She swore that they would take great care of me, that I would have to leave my room or bed for anything. This was a lie, she even hid the fact that I was barley able to walk and required a walker and help getting to the bathroom. She “dumped” me into a facility that was nothing she said it was and they had no idea that I could barely walk.

Dr. Chin and Dr. Darr only made matters worse by rushing through answers or telling me “we’ll take care of this next time” When I was told not to come back until I could pay or get a reject letter from MEDICAL I was left to once again do my best to figure out things alone. “There’s no rush” is what so many people have told me. But I can’t help but feel that there is a rush. I don’t know enough about HIV and how it will affect me or my body enough to say that “there is no rush” and neither does anyone else. Especially when you don’t take the time to at least address what I am asking you to, answer questions I need answers to.

There’s this huge campaign about getting tested and knowing what your HIV status is. Well for me, knowing what my HIV status is has done nothing but make my life crazy. It’s done nothing but added to the stress I am already under, it’s added to yet more paperwork, more places I have to try to seek out, more information I need to have with me at all times. Please dot get me wrong, the only person I blame for my HIV is the person who lied to me about being positive in the first place and then he even lied about that.

I wake up now questioning my life. Is my being gay something that is wrong? Is HIV a curse from God? Have I run into so many dead ends with HIV care because I need to repent for being gay? I have gone from feeling so comfortable and happy with WHO I am and now I am questioning a part of my life that will now have a HUGE presence IN my life. HIV for me, has been even more destructive to my life then 16 and half months of homelessness. MEDICAL wont help me until I have an AIDS diagnoses and doctors and nurses and other staff at UCLA have said I just have HIV, I am not sick, so don’t worry. HUH?

“I’ll see you in two weeks” is what my new doctor said to me and granted I am sure she has a ton of things to do and a ton of patients she must see and take care of. BUT, I just came from a hospital that told me I was HIV positive and have had no luck with getting answers or treatment and I have to start all over again with all the fuckin tests and I have to wait. It’s like waiting for another death sentence.

If I am not sick enough for treatment or not sick enough for MEDICAL, then why bother telling me about HIV at all? I am not sick enough to take meds, so why the fuck tell me?

“You’re sick Mr. Carr, but not sick enough for anyone to do anything about it. But you’re fine, there’s no rush. You’re just HIV positive but you are in great shape” The why tell me. If there’s nothing you can do but shit by and watch me get sick, why not wait for me to get sick enough. I simply can not wrap my head around telling someone they have HIV, but they won’t start ANY MEDS to prevent then from getting sicker UNTIL they are sicker. It’s no wonder people don’t get tested and those that do get tested and they act like they don’t know they are positive I fully understand.

I have HIV, but I have to be sicker before I begin treatment. So what do I do? Please don’t say “don’t get sick” because I already am. I already am sick. HIV means I am SICK. I just have no symptoms from the SICKNESS. Since there are no SYMMTOMS for the SICKNESS, there is no TREATAMENT for the HIV.

My stomach is in knots, my head kills me every minute of the day. I have to now rethink my entire life. Is being GAY against God? Is HIV the curse for being GAY? It sure feels and sounds like it. I have HIV and I will not get any meds to PREVENT me from getting sicker. I can only hope to get sicker, to start meds to stop me from getter sicker or I can hope not to get sicker from the SICKNESS I already have (HIV) in order to prevent starting the meds to prevent me from becoming more sicker from the SICKNESS I already have.

For me HIV has been this

“Mr. Carr, you been shot and you are bleeding, but I cant do anything for you until you have bleed enough and the life is nearly gone, then we will give you help in order to keep you alive so your suffering can continue.”

HIV is in my eyes a death sentence, no matter how I look at it. HIV is very much a death sentence for me. Now everyday for the rest of my life I will be forced to fight much harder then I have already fought this far and with HIV some of my weapons have been taken away. Defending myself in a fist fight means I could give someone HIV and change their life forever, so fist fights are no longer an option for me. I am homeless and fist fights have very much been par for the course, so what do I do?

I’ve spent my life cooking for people, catering on movie sets, private parties and weddings. I cut myself all the time and I am very careful, but I didn’t have HIV before, so now I will have to really think about how I will rebuild my life from scratch, because now I have HIV. I am way more stressed and more concerned about homelessness because of HIV and now I am way more worried about ever returning my life to the way it once was because of HIV. FOR ME HIV is a death sentence.

[Kengi]

I hasnt just come from people outside the gay community. It has come from other gay people as well, so it's very hard not to look at it as I do. I have forgiven him, but i ave not and will not forget. Each day HIV has felt very much like a death sentence to me not ONLY from outside the gay community, but from inside it as well.

[Kengi]

Thanks very much for your love and support. I am happy to have you here and welcome your advice and support.

[Tim]

I don't know my own current HIV status. For the moment I choose not to know, though that may change in the future. So I don't know how I would react if I received the news that I was positive. I talked to a friend a few weeks back who said his life fell apart for a while. He's still here, and doing ok most of the time. The news hasn't been a blessing for him.

In the days before treatment, I lost many friends to AIDS. There were heart-rending goodbyes holding bony bodies that hardly resembled the person you had known, in places that seemed anything but home. I don't really want to remember how it was and struggle to keep the good memories to the fore. Hopefully, it's not going to be like that again. I'm just angry that they could have been saved if today's treatments were available back then.

Given this week's news, Kengi, HIV probably isn't going to be what ends your life. And I'm pleased to be able to say that. I know it's confusing being told you're HIV-positive and that you don't need treatment, but it is good news. What it means is that you need to take care of yourself as best you can, and to take care to limit the risk to others. Most of us have learned how to behave well on that score, even if sometimes we don't. And if you have to fight to survive, fight.

Ironically, you've probably got to make fewer lifestyle choices than most to look after your health. You probably eat less and get more exercise than the average US citizen.

The further away that day is when you have to start on retrovirals, the better for the rest of your body, which is already taking a punishing. And the more chance there is that treatment regimes will improve still further. So hang onto the bit that's good news if you can.

[Kengi]

Tim

There aren’t many things that keep me hanging on, but I am happy that I can count you as one of them. You’ve been a wealth of love, support and friendship to me and this has meant the word to me. You’ve listened and not asked me to “be quiet” or “just pray” you’ve provided answers, advice and outlook on things that doctors right here in my own country could not……WOULD NOT provide.

Each time I get messages from people like you, I cant help but cry because they are coming from people who don’t know me and may never get to shake my hand, but they have been like brothers and sisters to me. I don’t have very many Kimarie’s and Natalie’s in my life, so this blog has become my only source for love, support, inspiration, advice and answers.

I will never give up, because I know there is no one like me. I am special in EVERY way and God has given me a task to do and it isn’t complete until he says it is complete. I do get tired and discouraged, there are times when all I do is cry and ask “why me” but then people like you show me what I already know. I am able to endure all that is before me.

I cant help but feel like HIV is in fact a death sentence because of all that has happened thus far. I am sick with HIV, but not sick enough for treatment. I don’t understand this. I have always thought that when you are sick, you take steps to correct the sickeness, but with HIV I must become sicker for the sickness before treatment will begin and even then, there isn’t anything that can be done other then prolong your sickness that has now made you sicker, so the suffering will only be prolonged. I just cant wrap my head around how HIV is a sickness that I must get sicker from, before I begin treatment to prevent me from becoming sicker from the sickness I now have that I cant get treatment for.

With how things have gone from doctors at UCLA I feel like with every dead end, every wrong answer I am given by people who are trained to help, there is a nail placed in my coffin. Each day I feel I am simply waiting for another nail to get put in and there isn’t much I can do about it.

Believe me my friend, I will never stop fighting not just for me, but for others who don’t have the tools I have, the education I have, the willingness to live like I have, the support of people like you.

The bible tells me that God will supply all my needs according to his riches in glory and with having people like you in my life I cant help but believe this is true. With people like you and others who have been a constant support system in my life I know my God is mighty and able. When I wasn’t getting support here from the gay community or medical community, God sent me YOU and others to encourage me. From way across the globe, God has supplied my “needs” and for this I will continue to press on and move forward with the faith that things will one day be better. Maybe not for me, but for others like me.

As far as health concerns I am very worried. I have had five Staph Infections, 6 colds this year alone, I’ve had the flu 3 times and each time I have had to fight them off on my own. My body is already overloaded with what it is dealing with. I’ve been on Bactrim for over 5 months now. Just two weeks ago I took my last pill and this week I can already feel where the areas where the Staph Infections were begin to burn on the inside and are already starting to harden and get painful. For me this means, housing options are closed and I already don’t have many as it is.

When the medical community tells me that there is “no rush” to treat my HIV or “don’t worry” I can’t help but worry. I am exposed every single day more so then people who live in clean environments. You’re right I have to do all I can to take better care of myself, but I can only work with what I have. NOTHING, so I make do with just that. NOTHING.

I love the friendship and support you’ve extended to me and I will promise you that the fighter in me will never stop fighting, but I will say that I have given up on some battles and I will be forced to give up on others too, because I no longer have the energy to fight all the battles I am currently fighting. The FIGHT in me will never die.

I don’t know if HIV will kill me, but I am also not counting it out, because I feel with being told I am HIV positive the game for LIFE has begun and HIV is kicking my ass. There are no studies or reports on how HIV will affect a person like me, so I am very much IN A RUSH to make sure I am not the person, the DEAD person on the evening news and then people say “We never thought the stress of homelessness, eating from trash cans, sleeping outside or in filthy missions and shelters could speed up the entire breakdown your body goes through with HIV.

I fully understand why people dont get tested. Right now I wished I was never tested and never told I am HIV positive. For me it hasnt been empowering. It's been the curse the right wing Christians and assholes speak of and from how it's been going for me I am now asking the question. "what if"

[Tim]

I went through a very bad time when I was a student, little of which was my fault. Eventually I went to see a counsellor, rather reluctantly, and when I told her how bad I felt, her response was "what kind of a person would you be if you didn't feel like this?". It was the most helpful thing anyone could have said at that moment. She pointed out that if I felt any better about things given the circumstances, I'd have been crazy. I wasn't, and you're certainly not.

But I suppose what I was really trying to say was that - looked at dispassionately - despite the diagnosis, HIV is probably the thing that needs to concern you least at the moment, other than getting your bloodwork done at regular intervals. It may be waiting for its moment, but your test results appear show that your body is still in charge on this one. And that's amazing, given what you've been through and are going through.

Your friendship - though we've only known each other briefly - is something to be treasured, and I want you to know that. It's frustrating not to be able to make more of a practical difference, but it's good to have you around online.

[Kengi]

Thanks Joe and Tim.

I am starting my homework today Joe.
I even got a call back from a place you told me to get in contact with. I have my follow up appointment to get the last of my test results back today. I've also sent out an email to meet with an Aids Educator one on one. He is someone I have already met and I think he will be a great resource for me.

[Kengi]

Thanks Joe

Harbor UCLA has refused to give me my lab results unless I pay for them and having a mailing address.