I am having a really good day. I can tell you exactly why.
On a minor scale I received the movies Dr. Horrible and Paris Je T'aime. If you want to know how I feel watch Paris Je T'aime. The last movie where the woman finds the mutual existence of happiness and sadness is exactly how I feel now. I can feel complete joy at the same time as a tragedy.
I told my sister yesterday. She told me that she didn't want to tell anyone because she didn't want people to see me any differently. Funny - that's one of the biggest battles people go through with this. Along those lines they also seem to go two ways. Either they fall back into their bad habits, if not worse, losing hope or they move forward (hold on Penny is dying. NPH you are so sexy even as a bad guy! Oh ooops thoughts on virtual paper) and lead healthier lives. I think I know which one I want so FYI I am heading to Turkey! I hear they have wonderful baths and drugs! ;)
Back to moving.
It's so nice to feel motivated once again. Even if it might be just one of many jump starts.
Note: my ultimate plan has worked! I asked my sister to come to my therapy appointment a week from Monday so that we can talk about this. As it turns out my sister realized this is all a plot to get her into therapy. She realized I don't have HIV and it was a way of trickery! Everyone can go home I don't have HIV. Sorry Renee! (Sarcasm sign held very high!)
BTW for those of you reading my blog - you can't get HIV from my dried apricots or my shampoo. You can however get it from parkin' with monkeys from Ghana.
Funny story. A couple of years ago my grandmother's brother and his wife talked about how they drove to one of their sibling's house 70 years ago. The sibling gave them a turkey. They knocked out the turkey and killed it. They packed up the car, put the turkey in the trunk and drove home. On the way back to their house they decided to do some parkin' under the starry skies! Parkin' is of course ranges from heavy making out to baby making. While they were making out they heard something outside. As it turns out the turkey was not dead. It was squabbling about in the trunk of the car.
Saturday, September 26, 2009
Friday, September 25, 2009
Day 10: Appointments to Keep
I woke at 6:30 am, threw on some jeans and a t shirt and walked through the dense fog to the UCSD testing center located 6 streets over. The hardest part of my morning was walking up the hill to University.
The first of many appointments today was of the testing consultation.
I sat down with the nurse and we went over my results and opportunities. Apparently tons of stuff come with disabilities. Thanks to the Ryan White foundation I will always have medical, dental, etc. even if I lose my job/insurance! I am sure it won't be as fancy as my current one but it is better than post-college having to real job, insurance and everyone else struggling thanks to a couple of towers falling.
I received several referrals to local doctors as well as counselors. Apparently my plan has some of the best! The nurse knows this because her insurance is one step down from mine!
We chatted a lot about how HIV is no longer about the disease. It's about self image. People struggle with themselves more than they do with the disease.
She was inspired from seeing her friends die from AIDS complications. She said I am very fortunate with opportunities available. Apparently medications don't have as many side effects and can have your viral load as undetectable. According to some studies in Sweden and Africa, heterosexual couples where one partner is pos and the other is neg, using medication can have a less than 1% transmission rate.
This had some bad side effects as more people were having unsafe sex. There are still precautions needed in that if two viruses mix you can develop a resistance to medications. Thankfully there are 28 medications on the market now and the resistance rate to them was very low for people who maintain their wellness.
Side effects to new drugs are almost none and can be taken indefinitely which is crazy to think of the cocktails that were used recently and a resistance is formed.
I was referred to local doctors and instructed what my next steps are.
After initial infection people develop 3 baselines. From these you can tell how long it will take before you need to start medication. The baseline is an indication of how our immune response is to the disease. Some people are naturally able to fight off the alien babies while others need some help.
After that I headed to the Center where I had my first counseling appointment. I was still filling out paper work on the way there. (There was a HUGE stack of paper work).
I made it and met Jackie my new therapist. We talked a lot about me! It was boring and long winded. What came out at the end was that I had an amazing support group, I lost a lot of anxiety I held and that I am preparing for the bad days that might come.
Because of the Ryan White Foundation, they receive grant money to cover counseling for those people with HIV, family counseling and individual counseling of family or those primarily affected by a person they know with HIV. I thought that was amazing. If any one of you people are feeling down I no long have to console you, you can get a free therapist or come with me to a session!
I invited my sister to my session not next week but the week after.
Today she begins reading my blog!
I just want to thank everyone who has helped me past this first week and a half. Everyone has been wonderful and I can't tell you how the text messages, comments about the blog, and in short shout outs to me make me feel.
The downfall is that this may continue for a couple of months and decline. You, my friends, need to break the standards and please show me that you can badger, her-ass, throw naughty pictures and flip me off well past this initial week and well into the rest of my life. I realize that everyone reading this will die before me, so I promise to thank you at your funeral and "Do onto others as they do onto me." No asshole straight male friends that does not mean I will make out with you. I don't care if the chances are nil and we are drunk. No means no!
The first of many appointments today was of the testing consultation.
I sat down with the nurse and we went over my results and opportunities. Apparently tons of stuff come with disabilities. Thanks to the Ryan White foundation I will always have medical, dental, etc. even if I lose my job/insurance! I am sure it won't be as fancy as my current one but it is better than post-college having to real job, insurance and everyone else struggling thanks to a couple of towers falling.
I received several referrals to local doctors as well as counselors. Apparently my plan has some of the best! The nurse knows this because her insurance is one step down from mine!
We chatted a lot about how HIV is no longer about the disease. It's about self image. People struggle with themselves more than they do with the disease.
She was inspired from seeing her friends die from AIDS complications. She said I am very fortunate with opportunities available. Apparently medications don't have as many side effects and can have your viral load as undetectable. According to some studies in Sweden and Africa, heterosexual couples where one partner is pos and the other is neg, using medication can have a less than 1% transmission rate.
This had some bad side effects as more people were having unsafe sex. There are still precautions needed in that if two viruses mix you can develop a resistance to medications. Thankfully there are 28 medications on the market now and the resistance rate to them was very low for people who maintain their wellness.
Side effects to new drugs are almost none and can be taken indefinitely which is crazy to think of the cocktails that were used recently and a resistance is formed.
I was referred to local doctors and instructed what my next steps are.
After initial infection people develop 3 baselines. From these you can tell how long it will take before you need to start medication. The baseline is an indication of how our immune response is to the disease. Some people are naturally able to fight off the alien babies while others need some help.
After that I headed to the Center where I had my first counseling appointment. I was still filling out paper work on the way there. (There was a HUGE stack of paper work).
I made it and met Jackie my new therapist. We talked a lot about me! It was boring and long winded. What came out at the end was that I had an amazing support group, I lost a lot of anxiety I held and that I am preparing for the bad days that might come.
Because of the Ryan White Foundation, they receive grant money to cover counseling for those people with HIV, family counseling and individual counseling of family or those primarily affected by a person they know with HIV. I thought that was amazing. If any one of you people are feeling down I no long have to console you, you can get a free therapist or come with me to a session!
I invited my sister to my session not next week but the week after.
Today she begins reading my blog!
I just want to thank everyone who has helped me past this first week and a half. Everyone has been wonderful and I can't tell you how the text messages, comments about the blog, and in short shout outs to me make me feel.
The downfall is that this may continue for a couple of months and decline. You, my friends, need to break the standards and please show me that you can badger, her-ass, throw naughty pictures and flip me off well past this initial week and well into the rest of my life. I realize that everyone reading this will die before me, so I promise to thank you at your funeral and "Do onto others as they do onto me." No asshole straight male friends that does not mean I will make out with you. I don't care if the chances are nil and we are drunk. No means no!
Thursday, September 24, 2009
DAY NINE: BAH
I am really pissed. If I thought my appointment rescheduling is bad well as it turns out the (ex)boyfriend went in for testing on Monday. They didn't have the correct test.
He goes in today and they performed the standard test but it's not the right one because the window period for the test isn't soon enough.
So I go to the Sacramento Center website http://www.saccenter.org/ and testing the first and third Friday and no information on any other locations?!?
So even if the (E)BF were to fly down to get the test with UCSD med center, he would still have to wait at least another week to fly down, get tested, fly back up . . .
I am trying to find information in Sacramento area that can do a viral check or a test that shows a possible infection 5 weeks after. This is driving me nuts and the anxiety of this is kicking his balls in a bad bad way.
"Bah" he says along with the occasional "RAWR". Why Mercury, why do you have to be in the wrong house. You are causing so much trouble.
He goes in today and they performed the standard test but it's not the right one because the window period for the test isn't soon enough.
So I go to the Sacramento Center website http://www.saccenter.org/ and testing the first and third Friday and no information on any other locations?!?
So even if the (E)BF were to fly down to get the test with UCSD med center, he would still have to wait at least another week to fly down, get tested, fly back up . . .
I am trying to find information in Sacramento area that can do a viral check or a test that shows a possible infection 5 weeks after. This is driving me nuts and the anxiety of this is kicking his balls in a bad bad way.
"Bah" he says along with the occasional "RAWR". Why Mercury, why do you have to be in the wrong house. You are causing so much trouble.
Wednesday, September 23, 2009
Day 8: Confirmation, Disappointment & Reassurance
I received confirmation from the nurse at the study. It was confirmed that the exposure was recent and that my system is doing quite well. She said it would probably be years before I have to start medication, even longer by living a healthier life.
I broke off with the boyfriend last night. I realized that it was a choice he was worried about making so I made it for him. I couldn't talk to him immediately after but then I sent him a message which led to two hours of conversation where I was able to actually talk to him like we did before a week ago.
We put the relationship aside and found a stability in friendship and the fact that we really care for each other but really don't know how to deal with this. I am sure there are many other people who go through this. I mean look at the movie Jeffrey. Why can't we all have Patrick Stewart as our gay best friend?
The nurse was comforting and explained that the resources that I have are huge and that I should be in really good hands no matter what. She said a majority of the reason is because I have been proactive about this and have found a network of support that can keep me on my toes.
I broke off with the boyfriend last night. I realized that it was a choice he was worried about making so I made it for him. I couldn't talk to him immediately after but then I sent him a message which led to two hours of conversation where I was able to actually talk to him like we did before a week ago.
We put the relationship aside and found a stability in friendship and the fact that we really care for each other but really don't know how to deal with this. I am sure there are many other people who go through this. I mean look at the movie Jeffrey. Why can't we all have Patrick Stewart as our gay best friend?
The nurse was comforting and explained that the resources that I have are huge and that I should be in really good hands no matter what. She said a majority of the reason is because I have been proactive about this and have found a network of support that can keep me on my toes.
Tuesday, September 22, 2009
Day 7: Again?
My counseling session was rescheduled from Thursday to Friday morning. I have to go into work late and figure out a time I can find a therapist. Does it get more difficult. Nope! I am over the hump - yay! :(
And it's going, going, gone.
No matter the outcome I realize that I would never be able to give raspberries to the boyfriend and make him laugh out loud. Laugh out the pure joys of devious love. I would never be able to pounce him without the fear that we'd be in the same boat as now.
I told him let's just do it now. Save some hurt. I contended with the simple notion of removing him from my Facebook status, back to being single. He did it for me. He removed me because I asked him to.
It's time for bed. Maybe sleep will remove some of the pain from my heart, if not temporarily.
And it's going, going, gone.
No matter the outcome I realize that I would never be able to give raspberries to the boyfriend and make him laugh out loud. Laugh out the pure joys of devious love. I would never be able to pounce him without the fear that we'd be in the same boat as now.
I told him let's just do it now. Save some hurt. I contended with the simple notion of removing him from my Facebook status, back to being single. He did it for me. He removed me because I asked him to.
It's time for bed. Maybe sleep will remove some of the pain from my heart, if not temporarily.
Day 7: Tea Happy
I received a bunch of loose tea in the mail. Chai, black current, ginger peach! Ok people enough with the minds in the gutter and don't be calling me a ginger peach. That's my roommate!
I love tea particularly loose tea. I love the process of smelling the leaves, watching them unfold in the tea pot and enjoying the aroma before you drink from the glass.
I go in at 7am tomorrow for my appointment at the UCSD clinic. They are going to confirm the presence of HIV virus in my blood. The test I took last week has a 1 in 500 chance of being incorrect. I can't imagine being that lucky. I can get 19 yahtzees in 5 games of super yahtzee but not having HIV is just pushing it.
I have hope. Especially since my mom, without knowing what's going on, just sent me an e-card that said "There you are just doing your own thing. Life interrupts, but you don't let it throw you. No, you always keep your cool!"
Such timing!
LATER:
I received a call from the counselor I will see tomorrow - well that I rescheduled from seeing tomorrow. Apparently she was double booked. Now I see her on Friday. SON OF A BITCH!!!! Have some anger!
She hasn't received my test back but she is going to call me with the results probably tomorrow afternoon. She said they are probably going to come back with a + and that she would help get a letter right away so I can start counseling on Thursday.
She asked me why I was so calm when I found out. She wanted to know if I knew, suspected, am in denial, went home and cried, hid it well . . . I told her that a large amount of anxiety has been lifted.
She told me that people around my age were brought up with this. As children we saw AIDS happen. Just think, we watched Ryan White, Greg Louganis, Magic Johnson and endless more raised awareness and fight for acceptance and help. HIV carriers came to classrooms and showed us how they aren't just drug abusers and old, gay, kinky men. A quilt was made and posters of HIV/AIDS line the walls of our doctor's offices and health centers. It's everywhere and it's pretty scary.
I'm angry and I won't let the raw emotions eat me up. Instead of exploding I decided to make this my time.
I rescheduled my appointment for Friday morning where I will meet and discuss health insurance options. I will find out more information on resources available. I will receive brief counseling, mostly them finding out more information on the study.
I am going to receive a call tomorrow with verification and have paper work copied for me so I can pick it up for Thursdays session and receive a little more therapy to discuss the final verification and any immediate concerns I have.
I explained that I am juggling all of this and I just want some peace.
Peace! Ha! Does Chaos allow that? I think not. Oh well. When you can't have peace you can shut your door, eat some dried apricots and drink some tea. Tea time is my time. No one else. Not even the Alien babies. None for you!
I love tea particularly loose tea. I love the process of smelling the leaves, watching them unfold in the tea pot and enjoying the aroma before you drink from the glass.
I go in at 7am tomorrow for my appointment at the UCSD clinic. They are going to confirm the presence of HIV virus in my blood. The test I took last week has a 1 in 500 chance of being incorrect. I can't imagine being that lucky. I can get 19 yahtzees in 5 games of super yahtzee but not having HIV is just pushing it.
I have hope. Especially since my mom, without knowing what's going on, just sent me an e-card that said "There you are just doing your own thing. Life interrupts, but you don't let it throw you. No, you always keep your cool!"
Such timing!
LATER:
I received a call from the counselor I will see tomorrow - well that I rescheduled from seeing tomorrow. Apparently she was double booked. Now I see her on Friday. SON OF A BITCH!!!! Have some anger!
She hasn't received my test back but she is going to call me with the results probably tomorrow afternoon. She said they are probably going to come back with a + and that she would help get a letter right away so I can start counseling on Thursday.
She asked me why I was so calm when I found out. She wanted to know if I knew, suspected, am in denial, went home and cried, hid it well . . . I told her that a large amount of anxiety has been lifted.
She told me that people around my age were brought up with this. As children we saw AIDS happen. Just think, we watched Ryan White, Greg Louganis, Magic Johnson and endless more raised awareness and fight for acceptance and help. HIV carriers came to classrooms and showed us how they aren't just drug abusers and old, gay, kinky men. A quilt was made and posters of HIV/AIDS line the walls of our doctor's offices and health centers. It's everywhere and it's pretty scary.
I'm angry and I won't let the raw emotions eat me up. Instead of exploding I decided to make this my time.
I rescheduled my appointment for Friday morning where I will meet and discuss health insurance options. I will find out more information on resources available. I will receive brief counseling, mostly them finding out more information on the study.
I am going to receive a call tomorrow with verification and have paper work copied for me so I can pick it up for Thursdays session and receive a little more therapy to discuss the final verification and any immediate concerns I have.
I explained that I am juggling all of this and I just want some peace.
Peace! Ha! Does Chaos allow that? I think not. Oh well. When you can't have peace you can shut your door, eat some dried apricots and drink some tea. Tea time is my time. No one else. Not even the Alien babies. None for you!
Day 6: Counseling Finally (sort of)
Today I went in for the initial counseling consultation at the center in San Diego. There were a few people in the lobby and lots of couch space. I sat in the back corner and pulled out Iago. He was a little scared. We calmed each other down by listen to "Wait Wait Don't Tell Me."
While waiting for my appointment I looked down at my foot and saw a purple spot. With all jokes aside I immediately thought lesion. (Why did I start reading Angels in America?) I was frozen. So many scary thoughts ran through my head until I came to the last one . . . "You can't have lesions you don't even have AIDS."
Just like a cold, sore throat, sinus headache, chills, couch all can be mistaken for infection with HIV, a spotted cold foot attached to an anxious body might be thought to be something associated with AIDS.
I am called in for my session.
It's not really a session it's an information collection hour. I spent an hour talking about myself. Who I was, information about my infection, what I expect to receive from counseling and why I want it.
I wore an SDSU/SUCS shirt and Julia couldn't stop looking at it. She finally stopped to ask if it said "Sucs." After the first laugh I felt at ease and ready to talk about what I felt. I mentioned my fears with the boyfriend, future anxiety and discontent. I flashed my thoughts of disappointment in myself and from others. I let her know that I tend to take on the burdens of others even when it's not my fault or responsibility and I don't want this. I don't want to drag myself in the gutter and have hours of self pity and sulking.
I realize I am on a better path for myself but I don't want to fall into places without hope. Desolate in the valley of sadness, as happy and hopeful as people see me, there is the opposite side that lingers near. It's easy for me to be happy but it's difficult to deal with the bad sad. I can find my heart full of hope but find the darkness of despair ready to volley out who is in charge.
In general I am happy person; maybe from remaining oblivious and happy-go-lucky, maybe from the support around me. My friend Donny told me he donated to the AIDS walk this weekend in my name. Here it begins. The battle, the tears, the joys, the support, the rejection, the session doesn't include counseling?
I just told you all my fears and needs and all I get is a stack of papers to fill out and an appointment on Thursday?
And this is why we have a support system. When I have to wait each week to abort all my problems, my friends are the ones I have to go to. I could go to myself but I talk to him way to much during the day and he gets annoying when he's always singing and dancin' - happy bastard.
Alex went home. I had a long chat with the boyfriend. His chances of getting this are quite low and although relationships may work out for neutral couples (+/-) I don't really know if they would work for him and me. I've spent a lot of time thinking and preparing about this. It's tough but really we need hurt and pain, we need to suffer, we need to cry to appreciate the precious gems in life.
While waiting for my appointment I looked down at my foot and saw a purple spot. With all jokes aside I immediately thought lesion. (Why did I start reading Angels in America?) I was frozen. So many scary thoughts ran through my head until I came to the last one . . . "You can't have lesions you don't even have AIDS."
Just like a cold, sore throat, sinus headache, chills, couch all can be mistaken for infection with HIV, a spotted cold foot attached to an anxious body might be thought to be something associated with AIDS.
I am called in for my session.
It's not really a session it's an information collection hour. I spent an hour talking about myself. Who I was, information about my infection, what I expect to receive from counseling and why I want it.
I wore an SDSU/SUCS shirt and Julia couldn't stop looking at it. She finally stopped to ask if it said "Sucs." After the first laugh I felt at ease and ready to talk about what I felt. I mentioned my fears with the boyfriend, future anxiety and discontent. I flashed my thoughts of disappointment in myself and from others. I let her know that I tend to take on the burdens of others even when it's not my fault or responsibility and I don't want this. I don't want to drag myself in the gutter and have hours of self pity and sulking.
I realize I am on a better path for myself but I don't want to fall into places without hope. Desolate in the valley of sadness, as happy and hopeful as people see me, there is the opposite side that lingers near. It's easy for me to be happy but it's difficult to deal with the bad sad. I can find my heart full of hope but find the darkness of despair ready to volley out who is in charge.
In general I am happy person; maybe from remaining oblivious and happy-go-lucky, maybe from the support around me. My friend Donny told me he donated to the AIDS walk this weekend in my name. Here it begins. The battle, the tears, the joys, the support, the rejection, the session doesn't include counseling?
I just told you all my fears and needs and all I get is a stack of papers to fill out and an appointment on Thursday?
And this is why we have a support system. When I have to wait each week to abort all my problems, my friends are the ones I have to go to. I could go to myself but I talk to him way to much during the day and he gets annoying when he's always singing and dancin' - happy bastard.
Alex went home. I had a long chat with the boyfriend. His chances of getting this are quite low and although relationships may work out for neutral couples (+/-) I don't really know if they would work for him and me. I've spent a lot of time thinking and preparing about this. It's tough but really we need hurt and pain, we need to suffer, we need to cry to appreciate the precious gems in life.
Sunday, September 20, 2009
Day 5: Putting it Together
I've been watching clips of "Putting it Together" a Sondheim review. Instead of associating death and destruction with Beethoven's 9th, we should all be forced to listen to Sondheim songs so that we can become empathetic to others and ourselves.
I feel like I am putting together my life again. Bit by bit I am figuring out who I can tell, how I say it, what I do next. I have told nine people. Nine is a good number. Nine various people with different perspectives. Gays and straights, men and woman, ethnic and white, old and young. I have only asked that they continue to humor me in perpetuity (or at least until they all die and leave me their tapioca pudding in the assisted living facility).
One friend has mentioned that he fully expects me to have so much fun with HIV. I ask why not? This fucker has invaded my body without me knowing. I have this very smart virus in me and it's not going to scare me. I refuse to have the bad dreams, to be upset, to think about what might happen.
After many years of dreaming about my future I often thought of "What if?" What if I get it? How would I react? What if is now. Say good-bye to the past and hello to now. The future just took a slight curve to the right (pause for double entendre) and I need to adjust.
I played Yahtzee today and rolled 13 yahtzees in three games. I wish I was this lucky all the time. But I think I am. So many people didn't have the support system I have when they were diagnosed. I find myself telling people without crying so much because I am finally comfortable to say out loud what I feared.
People seem scared for me. Why? I am scared when I fly but chances are I am not going to be in a plane that crashes. I don't plan on letting my body crash anytime soon, and when that does, you better have your walker ready with mine.
I feel like I am putting together my life again. Bit by bit I am figuring out who I can tell, how I say it, what I do next. I have told nine people. Nine is a good number. Nine various people with different perspectives. Gays and straights, men and woman, ethnic and white, old and young. I have only asked that they continue to humor me in perpetuity (or at least until they all die and leave me their tapioca pudding in the assisted living facility).
One friend has mentioned that he fully expects me to have so much fun with HIV. I ask why not? This fucker has invaded my body without me knowing. I have this very smart virus in me and it's not going to scare me. I refuse to have the bad dreams, to be upset, to think about what might happen.
After many years of dreaming about my future I often thought of "What if?" What if I get it? How would I react? What if is now. Say good-bye to the past and hello to now. The future just took a slight curve to the right (pause for double entendre) and I need to adjust.
I played Yahtzee today and rolled 13 yahtzees in three games. I wish I was this lucky all the time. But I think I am. So many people didn't have the support system I have when they were diagnosed. I find myself telling people without crying so much because I am finally comfortable to say out loud what I feared.
People seem scared for me. Why? I am scared when I fly but chances are I am not going to be in a plane that crashes. I don't plan on letting my body crash anytime soon, and when that does, you better have your walker ready with mine.
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