Saturday, October 10, 2009

Day 25: Angels in America

I spent last night cleaning up the house and watching "Angels in America." I put the movie and play down after I was diagnosed. I watched a majority of the 6 hour play last night and finished the rest this morning. I am following it up with "Jeffrey."

OK I am not sitting here with a blanket crying about relationships. Both movies are very insightful with HIV and the people surrounding them. Of course they are both in NY and involve real homosexuals, but that shouldn't detour any small town boy to learn.

There is such a balance in parents; Joe and his mother in "Angels and Jeffrey and his parents in "Jeffrey."

In Angels, Joe's mom talked about how ridiculous it is that he mentions he's a homosexual. Slowly she comes to term with a lifestyle she wasn't familiar with and slowly finds compassion.

In Jeffrey, his parents are very comfortable. They assist their son (who has recently stopped having sex) by describing every form of self stimulation. This includes dirty magazines, toys and his mother practicing phone sex with Jeffrey.

It's really hard to predict how people will interpret something this big. It's even more frustrating to understand the reaction, which sometimes can misinterpret a persons true feelings.

Sometimes people shy away or push away when they are scared of being drawn into reality and being hurt.

I wish I could say "I'm dying I don't have time!" But NO! HIV has to be so manageable now. It's scary but it doesn't have to ruin your life.

Sticking with your health will lead to happy outlets. You just have to trust yourself and hope.

Friday, October 9, 2009

Day 24: Heatlh or Happiness?

What do you sacrifice? Health or Happiness. If something makes you so secure, so comfortable and brings out the best in you but it can detour your health - do you keep doing it?

If something keeps you so healthy you forget to live, is that extra day of life worth not enjoying the past 30 years?

What I am trying to say is that I had to make a choice today. I don't think it was the best choice. Maybe it's the paranoid choice. Maybe it was a decision from fear. Perhaps it was a clear reasoned thought. Perhaps I care about myself enough that I need to make sure I will be ok.

I asked my Pal not to come.

Two events I have been looking forward too have been vaporized. He was intending to come in a week and in November.

I asked my Pal not to come.

I am scared of getting sick from my Pal messing around right before he sees me. Just a kiss with the flu, anything that could assist the virus to raise its load in me. I don't want or need to take antibiotics, be in bed, especially now that I am going trough vaccines.

My arm is still puffy from my pneumonia vaccine. In two weeks when my system stabilizes I will receive both flu shots. Once again my viral load will rise and my system will work hard to regain stability.

He asked me if I didn't want him to come.

Am I being paranoid or overly cautious for my health?

Am I sacrificing this moment I could feel happiness only to discover I am quite empty and scared inside?

"Make haste steady choices and put all worries to rest. Choose quickly for time is short as the Mayan calendar will soon end."

Did I make the choice or has my worries set in? I asked my Pal not to come.

I can tell you I feel safe in making this choice but I don't feel happy. Perhaps it's because my Pal's support has suddenly become short term. I am coming to terms that maybe one day we might be revisited, if the fates would allow. Anyone ever read the original lyrics?.

Back to practicing Butterfly Nets.

Day 24: Let's Learn About the Load

Today readers we are going to learn about Viral Luh-Ode.

Viral Load (Load) is a measurement of what amount of HIV is partying in a teaspoon of blood. This is one measurement that is key to understanding HIV progression and predicting when medications will be needed.

Over time the Load can remain constant until the immune system says "You know what. I'm TIIIIIIRED! I don't want to work on less than minimum wage just to keep your ass looking healthy. I don't get benefits. I don't get appreciated. You stick this holistic mumbo jumbo expectin' me to work magic. No way!"

At this point the Load increases and your immune system decreases and this is when you get your diagnosis of AIDS. Yes AIDS! Of course this is when you begin your medication and live out the rest of your life according to how the three sisters spin the threads of your fate. I hope their immune systems stay healthy and they continue to take their mydol otherwise someone is going to have a bad day!

Loads can fluctuate. Colds, recent vaccinations, infections, mensies, stress and other additional problems can all briefly raise the Load, returning a few weeks after the body stabilizes or at the end of infection. Even the lab you take your count at can vary in numbers because different machines are used for the same test.

Testing your Load should happen every 6-12 months, depending on what previous conditions you have (anemia or other factors may increase monitoring to every 3-6 months). Initially a test should be done, then followed up with another blood test 1-3 months after. This will help understand were the base of the load is going. (Typically referred to the baseline of the viral load!)

So let's go to numbers! Based upon the number of copies of HIV Load in your teaspoon of blood:

High is above 100,000

Low is under 10,000 to 100,000

Undetectable is 50

On average many people with a low viral load have one between 10,000 - 50,000.

Woman have a lower viral load than men so levels should be checked if they are in the 30,000 - 50,000 range.

What is undetectable?

A Load count 50 and below is considered undetectable. When you are on medication your Load count will be this low. 1% of the population has an immune system that naturally regulates HIV and suppress the virus down to undetectable.

Undetectable means that although transmission is possible, the rate of transmission is almost 0%. The lower the viral load, the lower the chance of transmission during the nasty.

Undetectable viral loads does not mean that their HIV is gone. HIV is there there but in a very Very small quantity.

Thebody.com is a wonderful resources for information on HIV.

Thursday, October 8, 2009

Day 23: Rejection

Has life become harder? At this point can I go on a date without having the fear that someone is going to tell me "Well you know, I just can't get into that."

Rejection because of a disability? Yes. Apparently HIV makes you the only person in the world to get rejected because of your disability. I am, so far the ONLY person I know who will be rejected because of being different. I will have so many people that will not love me because I have HIV.

OH Fuck! Me? Hopeless me.

I guess I will have to worry about finding someone who can accept me. I can't believe life has to be so cruel to isolate me because of my . . .

Don't worry. Just make life comfortable. It's not a huge issue unless people make it something for center stage.

I've hung out with a couple of positive guys. I have to say, when I think about the other person or me being positive then I feel awkward. As soon as I feel uncomfortable with it then I feel rejection.

NOTE: In order for those of you people who are negative to relate to this post, please find a flaw (smelly BO, pimply back, red hair) and replace that with HIV.

Wednesday, October 7, 2009

Day 22: Vital Results or "Really? No Really?"

So here are the results. No STD's. No hep c exposure and resistant to hep a and b.

My Tcell/CD4 count is 517. Under 500 and they worry.

My percentage is 27.2% which is low. Under 30.8% is low.

With these alone it looks really scary.

A person with HIV can have a viral load anywhere between less than 50 copies to over 1,000,000 copies per milliliter of blood (copies/mL). Less than 50 copies/mL is considered undetectable. Low viral load is between 10,000 - 50,000 and under.

My viral load is 200! Yup it's fucking low. Apparently my immune system is just naturally low or the virus is sluggish and slow at replicating. So basically my immune system is barely working to keep the virus at a 200 (which would get even lower). My immune system looks at my HIV virus and says "Really? No really is that it?"

At this point the doctor says if I stay this way my body won't be working really hard to fight it off, meaning my immune system is going to stay really healthy even with HIV in me. He said I would probably start medication if I was in a relationship and wanted to have unprotected sex (sex like wolves, chickens or farmer/sheep) and keep my levels to undetectable.

He said this is really really great news. I am considerably healthy and very lucky.

OK time to eat!

Day 22: Vitals

My appointment is at 4:45 p.m.

I will receive results and will explain them later.

I am scared but I can only be brave and hope for the best. If the news is bad (level 4 strain, resistant to meds, high viral load low immune system) then I will just have to work with what I have and "go with what you know."

Tuesday, October 6, 2009

Day 21: All I Heard Was Blah Blah Blah I'm A Dirty Tramp

Disclosing HIV isn't just about the disease, it's about coming to terms with how you got this, why you let it happen and any accepting responsibility. It's also about explaining this to most people without knowing if there will be acceptance. What is any reaction to bad news? How do people feel? Can they express what they are thinking and be honest with me without fearing to hurt me? Conchata Ferrell says it best.

Having HIV is like being gay one more time. The emotional humps that come from telling people are no different if not more intense. Being gay is one thing but being HIV positive and gay. Well fuck now I just made things worse! Or did I?

It's been three weeks. I haven't turned to God for devotion and celibacy. I haven't run to my room to sulk in this problem and more importantly I haven't kicked myself in the ass thinking every hour "You idiot what the fuck did you do that for?"

Self love! (Not That self love - although that self love is good for you since it does reduce the chance of prostate cancer!)

Do we give ourselves enough? Do we do things for ourselves thinking it is self love but instead it's just a temporary fix to ease our stress?

I worry about reactions from others but I know only I can make myself suffer from these reactions. Each I tell makes me experience fear of rejection times 1000. Even if I have known that person for a while and understand the great understanding they possess. Every single time I still get butterflies. I worry. I prepare myself for abandonment.

Only I can feel alone. At some point you have to let others in. You have to trust there will be those out there available for support. Those out there for short term (like therapy and support groups) and long term healing (family, friends, yourself).

In case you weren't wondering - Day 69 happens sechs (six in german) days before my birthday. Day 1469 will happen on approximately September 23, 2013 and Day 2469 will happen on June 20, 2015. If the Mayan calendar doesn't run out then we are having parties on those days!

Monday, October 5, 2009

Day 20: Therapy With My Sister

We sat down. My therapist asked how we were doing. I smiled and said I am doing well. I looked over at my sister and tears were flooding down her face. I put my hand on her back and she couldn't stop crying. I started to tear up and I looked at Jackie, and nodded.

This was my fear. That I would make those around me cry, fear and worry. That I would feel in my heart every reason why I shouldn't have did what I did to get me here. The shame. The disappointment. The "I told you so" or "What the fuck is wrong with you why didn't you use . . . "

I looked back at Jackie and I teared up a little more but I wouldn't let those feelings hurt me. I am living up to what I did but I refuse to make myself feel small. I've been there, I will feel that way when I tell my parents and I know now, with my sister here, she is terrified. She has school, work, life and now this.

I want to tell you our session was easy - it was. But that moment of making my sister cry, I can't imagine the pain my mom and dad are going to feel when I tell them.

(You know my mom saw the white skin cells in my mouth and said that people with HIV get that. This was a couple of years ago. I was only recently infected but I know my mom is more observant and aware like every other mother.)

I don't worry about telling my parents. I found that it will happen when it's right but to worry about when, how, the right moment just means more stress.

Rule #1 - Don't stress!

I asked my sister to educate herself. I know that this would help anyone with any disease. With all the stigmas out there, we can help put people at ease with education. This includes my parents. Support groups, current research, options, no one needs to continue to believe this is death.

Maybe I will die before my parents, maybe I will get hit by a bus. I can only live my life and be a better person.

My sister and Jackie are pretty surprised with how I am doing. They are amazed at my ability to cope and attack this in full force. Jackie predicts, as well as myself, that there will be a moment when I am going to dip down and fall for a bit.

My sister worries I am going to go into a dark place. I worry about that too although I know by having friends and family to keep me on my toes, a blog I can be honest with and networks I can feel at ease in, I can't go wrong. I am making everything around me my comfort zone.

That's just it.

As a performer, we are always making that small space where we stand and play our spot. We stand there and feed our emotions to the audience, raw material that we humbly give. When we are comfortable with our area we can deliver a peak performance. When we become worried about the territory our performance can fall short, flat on its face.

By making people and places my comfort zones I can feel the need to step out. The "dark place" isn't the only place I find solace.

I refuse to crash and I refuse to let my friends and family come near. I don't want to be alone and I won't be. I don't want to die in the next 50, 60? 69 years and I won't (unless of course a sting ray or bull trampling happens). Am I being optimistic or hiding the truth. People are living. People are taking care of themselves. People are doing what they can to live happy productive lives.

Once you believe in that then I don't think HIV can win.

This is what I hope my sister understood from the meeting. You can't think about death, it happens. You can think about living, having fun, enjoying life, volunteering, hoping and being here.

Day 20: Fear and Anxiety or "Dance Monkey Dance"

Maybe I am still wearing those rose-tinted glasses or maybe things are just fine for the moment. I feel a storm is coming soon. Just as one anxiety is lifted, so many others are setting in. Fears of this unknown HIV lifestyle looms, creating tension and worry.

I know I am lucky to have friends. I didn't have any friends at a few points in my life. After I started college and when I moved to San Diego I found myself at an immediate loss of people to hang out with. Over time high quality friendships develop and now I have a chain of people I can place faith that I won't be dropped.

Wealth is determined by happiness and at the moment I am rich from smiles.


Fear is still here.

I know one day I will be hurt far worse then a few things I have seen or felt. I refuse to dance like a monkey but it's very hard to choose who we tell and who we can feel comfortable around us. People are sympathetic, empathetic or pathetic. Do we continue to dance in fear that the entertainment will stop and our smelly monkey butts will be exposed?

Many people fear HIV will and can ruin their lives. Jobs shattered, communities shooting off snide remarks and rude behavior. Children taken away because people with HIV are unfit to take care of their children.

Aren't people with HIV unfit to have normal relationships? They screwed up big time and now they have to continue to wear that crimson A.

I was fearful of dating someone and finding out they had HIV. I wouldn't know how to react.

I fear that no one would or can love me because of this huge mistake.

I fear that I may tire my body out from being a dancing monkey rather than my lymphatic system shutting down naturally.

I fear.

Why?

It's our nature to fear.

We fear because we don't know what's ahead.

We can't trust that the right or best path will be there for us to take.

We lose trust because we depended on someone to be responsible for our life and safety and that was dropped.

Confidence is scraped away, leaving fear to rape our heart and devour our soul.

We can keep on dancing or we can stop.

When we stop we might smell. We might have fleas. We just might be dirty.

We can bathe, we can shower, we can wash ourselves. We can clean up as best we can and join the rest of the monkeys watching us.

I fear I will always have bananas thrown at my face. I guess that means more smoothies and sexual innuendos for me!

Sunday, October 4, 2009

Day 19: What is Support?

My sister called today and said that she is overwhelmed with school and might not be able to make our counseling session tomorrow. Another cancellation. This time it wasn't the random clinic, it wasn't a friend it was my sister.

I was upset but I didn't tell her. I ended up laying in my bed and decided to try and take a nap. The nap was thwarted because of a guy I met through finding mentors on poz.com. He had sent me an email about being a mentee/mentor. I emailed him back and let him know that I would be up for meeting.

We met for coffee. I think this is my first ever "support group." I felt pretty comfortable talking about this with someone else who got this and seems to be leading a healthy life.

It's quite common to have a fear of sex. In fact I have heard from several guys that don't have sex until a year later or might have it once and feel scared of contracting the disease.

When using protection the chances are very low, unless the sex is so wild and rough that paramedics need to be called.

We talked about fears, research and how his friend with HIV for the last 10 or so years says "It's really not a big deal."

After a couple of weeks I have seen that HIV itself isn't a big deal if you take care of yourself. It's no different then managing diabetes type 1, hepatitis B sickle cell anemia and others. You have to change your life, do the research, stay updated on changes and educate others.

My sister texted me back saying that she's been stressed and realizes that I need her right now and that she is coming tomorrow night.

Before I tell my parents, before I introduce them to this blog I need to make sure she and I are educated and updated on as much information.

I think it would be beneficial if each person reading this blog would make an effort to educate yourself and send me your facts and thoughts. Tell me your common misconceptions or things you never realized about HIV and AIDS.

And now for the ugly side:

During our conversation the Mentee mentioned that his hairdresser made a note about the Aids walk in San Diego. He said something to the extent that he "wished that those people with HIV/AIDS would die so the rest of us wouldn't have to worry." Bigotry exists in all communities. If each of you can educated yourself and others about this disease, then maybe we wouldn't be scared of dying. Maybe we wouldn't be scared to approach each other. And maybe people like me wouldn't have a fear to give my friends a hug, be touched or loved.

And what the fuck. How could he believe this is a homosexual disease? What a selfish fuck. Africa has so many heterosexual couples living and dying. So many kids being born with this disease that are not immediately becoming faggots. Damn homosexuals and their narrow minds. What was I saying?

Day 19: Morning Dreams

I spent my morning thinking about two things.

First thought was about mentors. I want to find a mentor and be a mentor. I have talked with a couple of guys online and they have been checking up on my lab results and asking questions of things I need to do. I want to give back to those people who are sure of the resources.

Second thought was of children. I was reminded of the now short lived dream of having children. My friend recently had unprotected sex and found out the girl wasn't going to birth his babies. I thought about it and I know one day I want little Piyo's running around (well maybe just one) of my own. Sure I will adopt but now? Now with this virus, and spreading, and children. I lost hope.

This morning I started to think about that. I started to think about the research and options out there. Why can't I have a child the natural way? Think about this. Taking meds makes me undetectable and the chances of spreading the virus from one person to the next is almost 0%. The next step would be finding someone who would be willing to either take that chance or possibly a woman who became positive (I can only imagine how many stupid frat guys are going around . . . ok I shouldn't judge. Frat guys, football players, band geeks, computer nerds, student leaders but mostly frat guys spreading this disease) and who is on medication herself.

Of course there is always a small percentage of risk. Risk that I took and risk that I would pass onto another person. Is that something that I really want that bad enough to give or do?