While not as insightful as my title yesterday it fits my mood perfectly. I do want to clarify that I received several calls today and I do want to tell everyone I AM NOT FREAKING SUICIDAL! I thought I made it clear by saying there was more I wanted to see and do but a few of my friends were really concerned. I love you all!
Right now I really don’t know how I would put my mood. I am a bit overwhelmed with maybe a twist of depression thrown in for good measure. With social security taking their sweet time bills are piling up, medical insurance goes down the drain, and unfortunately they are taking me with them. My “advocate” told me today that it could be a couple of months before I was assigned a new adjudicator (the person who is responsible for filing my claim with the SS disability board). I told her frankly I don’t have a few months. I was supposed to get presumptive disability in March because I have oh I don’t know two terminal illnesses (one that progressed from HIV to AIDS in six months) and several other chronic issues that at least for now prohibit me from working in any successful productive environment. Here we are in July my rent goes unpaid (thankfully my older roommate I have been with since I was 16 and is more like my dad than roommate) has been very understanding. I have managed to stay afloat by paying my bills with excess student loan money but now that is running out and tapped out unless I can manage to get more from them.
I feel like a failure in my relationship right now. I spoke with Jarred this evening and told him that if shoes were reversed I would tell myself to get my shit together and then call back. I believe him when he says all is well but I mean I think sometimes what is the straw that breaks the camels back? I don’t have the energy or the desire to have sex. Not because I don’t find him highly attractive I just can’t seem to feel good and be in the mood at the same time.
I have always been a logical thinking person. I have always had a plan and pretty much followed it to the finish. Right now there is just no logic there. It is totally reeking havoc in what little mind I have left. Maybe now the diagnosis that I longed to have to bring peace to my life is finally causing the emotional turmoil that it should have when they said “you have HIV.” WOW talk about your delayed reaction.
I get so frustrated and I sit here crying because I am lost (AND NO I AM NOT TALKING ABOUT JESUS for all you fundes). When I look in the mirror it is not the same person that was there July 27, 2004. He looks the same, has the same personality but is a totally different person. One whose life is planned around bathroom breaks and lives on post-it notes because his short term memory loss is having long term memory loss. I know that deep down I will never be the same James ever again but to have a part of him back in my life again would make me the happiest boy in the world.
I went to a person today to talk about chest x-rays and he seems to think I have a mild case of PCP. It is going undiagnosed because my CD4 has never been below 200. I go tomorrow to get a second opinion on my second opinion. I think once I know what is going on physically that may ease some of the tension that I have built up inside.
So for now I will sit here in jail and wait to get the $50 to bail myself out or will pray that I roll doubles before the eternal three turns.
27 July 2005
Fought a good fight....
The title today is one of great reflection. Many of you who read this and know me will attest that Christianity is not something I readily cling to for comfort. After all it doesn’t comfort people like me. Its love is some of the more hateful, hurtful, discriminatory, and judgmental love I have ever had the un-privilege to experience in my life. However, I find great comfort and conflict in this passage. The full text is as follows:
2 Timothy 4:6-8 (King James Version)
6: For I am now ready to be offered, and the time of my departure is at hand.
7: I have fought a good fight, I have finished my course, I have kept the faith:
8: Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me at that day: and not to me only, but unto all them also that love his appearing.
While the time of my departure is not yet at hand, I feel as if I have fought a good fight, finished several courses and all the while kept my faith. Through struggles with my family, living alone now for years, and going through a hell of a lot on my own I kept the faith. And then there was the day when I had faith that one day I would wake up and read that a cure for cancer has been found. Four years later after great strides, A LOT of breast cancer speaking fundraisers, there still is not a cure nor an easier treatment than what is currently offered. Is it a wonder that people give up and throw in the towel? Every time I have had to say goodbye to a friend who passed away of AIDS related complications I have kept the faith that sometime, somewhere research would finally payoff and at minimal a vaccine would be available. Yet again there is at least for now an empty promise. Now I watch slowly as a new generation of HIV positive people slip into AIDS and die due to complications. Every time I am admitted to the hospital I obviously have faith that I will get better. However, in the meantime I have to watch myself and one of my best friends in the world succumb to a disease that should have been eradicated 20 years ago. But we fight a good fight, keep the faith and offer ourselves but the finish line seems to never be near. Please do not take this the wrong way, when I say finish line I am not necessarily referring to death. There is still so much more to do and see. I suppose I ask one of the greatest questions in the world. Why do people suffer? I don’t buy into the whole Adam and Eve fall into sin crap. If there is a God that is just and loving (as in the Christian faith) why does “he” make the people he loves so much suffer so hard? Having to watch my loved ones face as a nurse mentioned that she “has known people live 10-15 years with my condition” fall from hurt is something that no one should have to witness. Perhaps Jim Carrey said it best when he said God was a giant kid in the sky with a magnifying glass. I simply know that I take my meds everyday, do what I am told and yet in the end the result is still the same. The great thing about HIV/AIDS is that it is no longer a death warrant. It is however, a death sentence. A death warrant is one that is executed quickly. Most times THANKFULLY that is not the case. But truth be told unless you get hit by a bus or something along those lines you will eventually fall to AIDS related complications (ARC). Since I received official word of my AIDS diagnosis I have held up pretty well. Perhaps this is just my way of trying to rationalize in my head. There are days when I just sit back and think…”it’s a race between cancer and AIDS to see what gets me first.” I do admit that it does not dominate my thoughts, but I do think about it. I laugh and say I have the luxury only a handful of other people know…the way they will die. I ask myself now is that a comfort or a curse? At one time I thought it to be a comfort. Now I just don’t know how to deal with it. Alas, things will come in time. Things that are not known will be made known while the time is right I suppose. I just know for now I taking a nap and if the course end is near wake me on your by and together we will collect the crown of righteousness :-D
25 July 2005
It's Not HIV but...
It isn’t full blown AIDS either. I was hospitalized last week with a bout of pneumonia. This is the third time in six months. I really have been avoiding this like the plague because according to the CDC a person is “diagnosed with AIDS when they have recurrent pneumonia (meaning 3 or more times within a set period).” I am in that set period of time. I am dealing with it very well. It is just a thing. Not too much is happening besides that. They released me yesterday with two new medications to take short term. They may put me on antibiotics for a prophylaxis…I shall see next week where that will take me.
I am a bit confused about my lungs. During the initial stages of my visit my doctor told me that they were able to see an infiltrate on my right lung. Up until this point it was only visible by CT scan which means it is getting more dense. However, it was not as severe when I was finally able to leave. That makes little difference because the problem is that where you once couldn’t see it…now you can.
Jarred was a real trooper. I love him so much. He stayed with me while at the hospital, leaving only when necessary. He slept on the pullout sofa couch thing. I swear the boy can sleep on anything during anything. Even the knocking-blood pressure taking-stab you in the arm, nurses didn’t wake him up. It was still cute none the less. Also, a large majority of my friends came up and were extremely supportive as well. I believe that is what made the 5 days somewhat bearable. My mom was really great during this time as well. She brought me goodies and tended me the way only mom knows how.
Well I would write more but as you can tell it has been a fairly uneventful week. Maybe more will happen this week.
Hugs and love,
James
I am a bit confused about my lungs. During the initial stages of my visit my doctor told me that they were able to see an infiltrate on my right lung. Up until this point it was only visible by CT scan which means it is getting more dense. However, it was not as severe when I was finally able to leave. That makes little difference because the problem is that where you once couldn’t see it…now you can.
Jarred was a real trooper. I love him so much. He stayed with me while at the hospital, leaving only when necessary. He slept on the pullout sofa couch thing. I swear the boy can sleep on anything during anything. Even the knocking-blood pressure taking-stab you in the arm, nurses didn’t wake him up. It was still cute none the less. Also, a large majority of my friends came up and were extremely supportive as well. I believe that is what made the 5 days somewhat bearable. My mom was really great during this time as well. She brought me goodies and tended me the way only mom knows how.
Well I would write more but as you can tell it has been a fairly uneventful week. Maybe more will happen this week.
Hugs and love,
James
19 July 2005
SURGEON GENERAL WARNING...SMOKERS SUCK!!!!!!!!!
Greetings! I bring good tidings and cheer. Yeah, whatever. As some of you know or don’t know I had my doctors appointment yesterday. There was some good news as well as some bad, let us go over the bad first.
Those of you who have followed by blog know that my original cocktail of AIDS meds truvada/sustiva didn’t quite work out for the better. I was having a rash, and then some pretty severe anxiety issues. I wanted to kill the cats, kids, and stupid people in general. Well according to some tests it caused permanent CNS (central nervous system) damage. I am not a drooling vegetable or anything; however it affected the part of my CNS which regulates anxiety. So I probably will be on anti-anxiety medicine for an extended period of time. Meaning that my temper which was really bad before is now even worse when pressed. Think about that next time you cut me off on the interstate you freaking morons.
During my hospital visits earlier this year my arm had ample opportunity to develop thrombosis. Basically that is a condition where your vein collapses and causes a series of blood clots in the area in which an IV is placed. Back in February my doctor requested that we give it six months to heal itself. Officially six months is over and now my hand actually goes numb sometimes and I lose complete feeling. Well that is a lie, I can feel that it is much colder than the rest of my body. That seems to be the primary concern right now. So surgery will be scheduled when I meet with the neurologist/cardiologist sometime here in the near future.
Now for all of you who might be wondering about the title of today’s recounted sage here goes. We seem to have found the roots of my lung issues. First of all being exposed to secondhand smoke for most of my life didn’t help my situation. For all you smokers who say the only ones you are hurting is yourself is utter BULLSHIT. Why should I be the one that has to be inconvenienced and go outside when it is you who is polluting the air with known cancer causing agents. The other reason is because of Grady Healthcare System. When I started going to them in late October sick as a dog they told me I didn’t have HIV, Syphilis, or any other STD. They also told me that I didn’t have bronchitis or pneumonia. They gathered that by ONE CHEST X-RAY. They did nothing more than tell me I had the FUCKING FLU for FOUR MONTHS. Of course do not think that yours truly did not protest that diagnosis but what could I do? So this entire time for FOUR MONTHS this bacteria was eating my lung which caused bronchitis and then pneumonia to form. DIE DIE DIE DIE DIE DIE DIE DIE DIE DIE DIE YOU EVIL BASTARDS! I HOPE YOU GET THE SAME LEVEL OF CARE YOU GAVE ME WHEN YOU’RE FREAKING SICK! Alright sorry for the outburst however, I think it was warranted.
Now for the GOOD NEWS!!!!! I had my labs drawn at the beginning of the month. I got the results yesterday. My CD4 count has risen by 221 to an amazing 638 (that is great considering the average male has about 1000). My viral load (the amount of virus in your blood) dropped by 500 to 170. This means that my new cocktail is working really well. I was really glad to hear that my numbers were so good considering the fact that when I had labs drawn I was sick. Now that they are much better we can start working on issues that we couldn’t before because my viral load was so off the chain.
On to other news…Jarred and I are doing really well. We’ve talked a lot about my fears and concerns with him being negative. The fear of being left at the most down point in my life is very real. He assures me that he will be there through the thick and the thin. I believe him with all of my heart, however, it is my own demon that I have to fight and it does continue to get better. He is still trying to sell his house. He got a new real estate agent that hopefully will be a lot better job than his last P.O.S. agent.
My best friend Ms. Jenkins (AKA Wayne) dumped his lover of 10 years. It’s been a real trying time for him with work and people not paying him (the attorney bastards). So I am about to pull some ghetto bill collecting action on the people that owe him money. Overall he is much happier being single and able to do his own thing. He just gets to sleep with all the men that I would have if I didn’t have such a wonderful boyfriend/partner/lover/husband. Gay relationships are kind of funny. You really don’t know what to call each other because there is a stage where you are more than boyfriends but not quite lovers yet. If anyone knows of a term please let me know J
Well kiddies that is about it for now. Uncle James is ready to sign off for the time being.
James’ words of wisdom: If you can’t be good then be good at it.
Those of you who have followed by blog know that my original cocktail of AIDS meds truvada/sustiva didn’t quite work out for the better. I was having a rash, and then some pretty severe anxiety issues. I wanted to kill the cats, kids, and stupid people in general. Well according to some tests it caused permanent CNS (central nervous system) damage. I am not a drooling vegetable or anything; however it affected the part of my CNS which regulates anxiety. So I probably will be on anti-anxiety medicine for an extended period of time. Meaning that my temper which was really bad before is now even worse when pressed. Think about that next time you cut me off on the interstate you freaking morons.
During my hospital visits earlier this year my arm had ample opportunity to develop thrombosis. Basically that is a condition where your vein collapses and causes a series of blood clots in the area in which an IV is placed. Back in February my doctor requested that we give it six months to heal itself. Officially six months is over and now my hand actually goes numb sometimes and I lose complete feeling. Well that is a lie, I can feel that it is much colder than the rest of my body. That seems to be the primary concern right now. So surgery will be scheduled when I meet with the neurologist/cardiologist sometime here in the near future.
Now for all of you who might be wondering about the title of today’s recounted sage here goes. We seem to have found the roots of my lung issues. First of all being exposed to secondhand smoke for most of my life didn’t help my situation. For all you smokers who say the only ones you are hurting is yourself is utter BULLSHIT. Why should I be the one that has to be inconvenienced and go outside when it is you who is polluting the air with known cancer causing agents. The other reason is because of Grady Healthcare System. When I started going to them in late October sick as a dog they told me I didn’t have HIV, Syphilis, or any other STD. They also told me that I didn’t have bronchitis or pneumonia. They gathered that by ONE CHEST X-RAY. They did nothing more than tell me I had the FUCKING FLU for FOUR MONTHS. Of course do not think that yours truly did not protest that diagnosis but what could I do? So this entire time for FOUR MONTHS this bacteria was eating my lung which caused bronchitis and then pneumonia to form. DIE DIE DIE DIE DIE DIE DIE DIE DIE DIE DIE YOU EVIL BASTARDS! I HOPE YOU GET THE SAME LEVEL OF CARE YOU GAVE ME WHEN YOU’RE FREAKING SICK! Alright sorry for the outburst however, I think it was warranted.
Now for the GOOD NEWS!!!!! I had my labs drawn at the beginning of the month. I got the results yesterday. My CD4 count has risen by 221 to an amazing 638 (that is great considering the average male has about 1000). My viral load (the amount of virus in your blood) dropped by 500 to 170. This means that my new cocktail is working really well. I was really glad to hear that my numbers were so good considering the fact that when I had labs drawn I was sick. Now that they are much better we can start working on issues that we couldn’t before because my viral load was so off the chain.
On to other news…Jarred and I are doing really well. We’ve talked a lot about my fears and concerns with him being negative. The fear of being left at the most down point in my life is very real. He assures me that he will be there through the thick and the thin. I believe him with all of my heart, however, it is my own demon that I have to fight and it does continue to get better. He is still trying to sell his house. He got a new real estate agent that hopefully will be a lot better job than his last P.O.S. agent.
My best friend Ms. Jenkins (AKA Wayne) dumped his lover of 10 years. It’s been a real trying time for him with work and people not paying him (the attorney bastards). So I am about to pull some ghetto bill collecting action on the people that owe him money. Overall he is much happier being single and able to do his own thing. He just gets to sleep with all the men that I would have if I didn’t have such a wonderful boyfriend/partner/lover/husband. Gay relationships are kind of funny. You really don’t know what to call each other because there is a stage where you are more than boyfriends but not quite lovers yet. If anyone knows of a term please let me know J
Well kiddies that is about it for now. Uncle James is ready to sign off for the time being.
James’ words of wisdom: If you can’t be good then be good at it.
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