Friday, June 21, 2013
Fear
I know it has been a while since I have posted. If you are looking forward to updates, I am sorry. I haven't posted because, though I still know how lucky I am and how much I owe to God, I have a lot of fear and sorrow that I don't like to admit.
I spent another 4 days in the hospital. This time it was because I had Rhino Virus and Human Metapneumo Virus. Basically? A cold. nothing to serious...for a normal person. I am no longer normal. It is sobering to think that a cold could put me in the hospital. I have been thinking a lot about the fact that it has been more than a year since I started getting sick. Each time it has taken more than the last to bring me back to health and periods of health have lasted less and less time. It is part of the reason why Dr. Cheng tested me in the first place.
I had been thinking about all of this already but then I made a big mistake. I watched a movie called "...And the band layed on." Now this is a very good movie both well done and informative. For those who have never seen it, it is a dramatic movie with an all star cast that is a dramatic retelling of the outbreak of HIV/AIDS and the rush to learn enough about what was happening to try and treat a disease that, at the time, had a 100% fatality rate. It started out being called "Gay Cancer" and "GRID" (Gay Related Immune Deficiency), and even with a 100% fatality rate, most of the world didn't really want to acknoledge it or even speak of it. The people who seemed to be most at risk didn't want to take any steps to avoid getting it, such as fighting the closing of the bath houses. Fear does amazing things. Sometimes it makes you overreact, while other times it makes you UNDER react. The scary thing for me was that every one of the people dying of this terrible disease had a terrible cough and were easily fatigued...Just like me.
Now I have seen this movie 3 or 4 times over the years, but this time was different. Before it was about "them." It was about an unfortunate group who, while they were my friends and neighbors, were a world away. Now, it was me. I spent several hours crying. I have shed tears over this since I was diagnosed HIV +, but never had a real break down...until now. Later that same day I was admitted to the hospital for a cold.
It was a very scary day. I had decided That I needed to accept the fact that I was going to die and that I needed to prepare for it. Come to peace with it. Even, perhaps, embrace it. Face it without fear. Inside I know that today HIV/AIDS is more like a chronic condition. HIV +/AIDS patients can live a full normal life span if they take their treatment seriously and responsibly. I had been told that the first year is the hardest medically. That it will take a while to rebuild my immune system, especially since it had been nearly completely destroyed. I had evidence that it could improve since it already had. Just not enough yet.
That day, All I felt was fear. Fear overwhelms and invades. Fear betrays you. Fear will destroy you if you let it. Some days i don't let it in but other days i cannot help it. I realized this week that I don't have as much of a handle on this fear as I thought I had. I realized that, to some extent, I had fooled myself that I could control the fear and sorrow that having this disease can create. To be honest I am not sure how I will escape the periods of fear and sorrow, but I am positive I will need my friend's help.
Saturday, April 20, 2013
Outlook
As I have said before, I have been thinking a lot over the last month or so. My first reaction was to think about how terrible this whole thing is. I got very down. I felt even more sick, and to be honest, I wasn't sure how much I wanted to live. In fact, I was pretty sure that I didn't want to at all.
God and my Family and Friends snapped me out of that for the most part. And I decided pretty early on that I was NOT going to just lay around in bed all day. No matter how I felt physically or emotionally, I was going to leave the house. I opened all the curtains and the windows when the outside temperature allowed. I am not going to live in a cave.
Then I came to realize just how much viewpoint and attitude have to do with how you feel. I could lay around feeling sorry for myself...feeling miserable and depressed. I COULD do that, but what is the point of that? True the medication makes me feel like crap, but there are a lot of blessings too. I have help getting the meds. I have great family and friends. The whole world still is out there for me.
So here is my overall point. I can rejoice in all that is good in my life. Accept what has been given both good and bad and integrate them and have a meaningful life, or I can wallow in the darkness feeling sick from the disease and the meds that treat it. But if I did that, what is the point of taking the pills?
Wednesday, April 10, 2013
Friends
I have done a lot of thinking during the last month. I have spent a week in the hospital and 3 weeks at home with little to do. I have thought a lot about the friends and family that have all been so supportive. I think about the people who have people they may have known for years who abandoned and ostracized them. How terrible that must be. At a time when they most need the people they love to be there for them, they also find themselves abandoned and find that their friends were just the fair weather variety.
I have been very lucky in this respect. Every one of my friends and family have not only been supportive and loving but have proven that they are there for me to the end. I could not ask for a better group of people in my life. I don't deserve such wonderful people.
To my friends and Family, each and every one of you are so important to me, now more than ever before. I feel bad that I have added this stress to your lives and want to thank you for all of your love. It really does give me strength I don't think I would have without you. I want to go on forever but there really is one major point and I don't want to bore you. I love you all and I know how lucky I am to know you. I am better off for havin' known ya.
Love, Me
I have been very lucky in this respect. Every one of my friends and family have not only been supportive and loving but have proven that they are there for me to the end. I could not ask for a better group of people in my life. I don't deserve such wonderful people.
To my friends and Family, each and every one of you are so important to me, now more than ever before. I feel bad that I have added this stress to your lives and want to thank you for all of your love. It really does give me strength I don't think I would have without you. I want to go on forever but there really is one major point and I don't want to bore you. I love you all and I know how lucky I am to know you. I am better off for havin' known ya.
Love, Me
Tuesday, April 9, 2013
1 Month
On March 8, 2013, after having been sick for 3 months straight, my doctor wanted to test me for HIV. She was concerned that I had had Thrush several times in the previous months along with a rash that follows a high fever, though adults "Almost never get it."
"Sure, test me. It is negative I am sure." I told her with what may have been a tiny bit too much confidence. So she sent me to the lab to get the blood drawn. I went home secure in the belief that I was Negative and we needed to really get to the bottom of this cough. I say secure but the truth is I wondered...What if?
You see, In June of 2009, I was with someone who in November 2009 told me they tested Positive for HIV. I of course got tested IMMEDIATELY and that test came back Negative. I was told by the doctor at the health department that the test was reliable and that, due to the timeline, I COULD come back in 3 months but he didn't really see the need. So I breathed a sigh of relief and went home. I Never went back. I was clean. The health department said so.
Now it's 3 1/2 years later and the only person I have been with since is my wife. I was feeling good about this new test overall. After all, she tested Negative during her pregnancy with our now 2 year old son. If I was HIV Positive, she would be too, right? Then on Monday, March 11, 2013 I got a call from my doctor. I had no idea when I went to work that day that the start of a new week would actually be the start of a whole new world, a whole new life.
She gave me the results of a test that I don't even remember. Then She said, "About the HIV Test...That came back Positive."
I was in shock. My first thought was my wife and son...Had I poisoned them? I asked if there was any chance they weren't positive. She gave the answer that I have heard a lot over the last month..."I don't know. I can't guess." She gave me her sympathy and apologized for telling me over the phone and explained why, but I don't care about that. If she had called me into the office to tell me I would have known and it would have been miserable. I just wanted my family to be ok.
I got up, walked to my wife's desk and took her by the hand. I led her to a meeting room, hugged her and told her the test came back. I don't know how I expected her to react, or even if I expected anything in particular, but she said simply, "We will get through this together."
I couldn't focus on work any more that day and didn't care. I called my best friend and told her and she too was extremely supportive. I am just so lucky to have the friends that I have.
My wife and son were tested right away and, THANK GOD! they were both Negative. I don't care how that is the case as long as it is. Thank you God for your protection over my family
Two weeks later I got worse news. It was no longer HIV. It was AIDS. And I had PCP, a type of pneumonia that AIDS patients get. The next day I was put into the hospital and stayed for 7 days. My life was spiraling away from me. I had NO control and it was all going to fast. I didn't know if I wanted to live. Some days, I still don't.
Now its been a month since the initial diagnosis and my life is completely different. The doctors told me that since my CD4 cells are so low, I should not go back to work. I should stay home as much as possible to avoid infection. It seems that I can catch ANYTHING and fight NOTHING. When my son is sick, rather than comfort him and take care of him, I need to avoid him. My wife has more on her plate than any person should ever have. She is extremely supportive and I love her more than I can say. She deserves so much better than this.
I know eventually things will develop into a new normal because the old normal is long gone. I just hope it happens soon.
"Sure, test me. It is negative I am sure." I told her with what may have been a tiny bit too much confidence. So she sent me to the lab to get the blood drawn. I went home secure in the belief that I was Negative and we needed to really get to the bottom of this cough. I say secure but the truth is I wondered...What if?
You see, In June of 2009, I was with someone who in November 2009 told me they tested Positive for HIV. I of course got tested IMMEDIATELY and that test came back Negative. I was told by the doctor at the health department that the test was reliable and that, due to the timeline, I COULD come back in 3 months but he didn't really see the need. So I breathed a sigh of relief and went home. I Never went back. I was clean. The health department said so.
Now it's 3 1/2 years later and the only person I have been with since is my wife. I was feeling good about this new test overall. After all, she tested Negative during her pregnancy with our now 2 year old son. If I was HIV Positive, she would be too, right? Then on Monday, March 11, 2013 I got a call from my doctor. I had no idea when I went to work that day that the start of a new week would actually be the start of a whole new world, a whole new life.
She gave me the results of a test that I don't even remember. Then She said, "About the HIV Test...That came back Positive."
I was in shock. My first thought was my wife and son...Had I poisoned them? I asked if there was any chance they weren't positive. She gave the answer that I have heard a lot over the last month..."I don't know. I can't guess." She gave me her sympathy and apologized for telling me over the phone and explained why, but I don't care about that. If she had called me into the office to tell me I would have known and it would have been miserable. I just wanted my family to be ok.
I got up, walked to my wife's desk and took her by the hand. I led her to a meeting room, hugged her and told her the test came back. I don't know how I expected her to react, or even if I expected anything in particular, but she said simply, "We will get through this together."
I couldn't focus on work any more that day and didn't care. I called my best friend and told her and she too was extremely supportive. I am just so lucky to have the friends that I have.
My wife and son were tested right away and, THANK GOD! they were both Negative. I don't care how that is the case as long as it is. Thank you God for your protection over my family
Two weeks later I got worse news. It was no longer HIV. It was AIDS. And I had PCP, a type of pneumonia that AIDS patients get. The next day I was put into the hospital and stayed for 7 days. My life was spiraling away from me. I had NO control and it was all going to fast. I didn't know if I wanted to live. Some days, I still don't.
Now its been a month since the initial diagnosis and my life is completely different. The doctors told me that since my CD4 cells are so low, I should not go back to work. I should stay home as much as possible to avoid infection. It seems that I can catch ANYTHING and fight NOTHING. When my son is sick, rather than comfort him and take care of him, I need to avoid him. My wife has more on her plate than any person should ever have. She is extremely supportive and I love her more than I can say. She deserves so much better than this.
I know eventually things will develop into a new normal because the old normal is long gone. I just hope it happens soon.
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