Waking Up With AIDS
It’s such an effort, getting up in the morning. When I swing my legs over the edge of the bed, I feel a small burst of cool air, washing over the fire
of my feet and ankles. Momentary, and fleeting, but a bit of relief nonetheless. As I walk to the kitchen to make my coffee, I feel as if my legs are
wooden, and I walk with a thudding that sends shivers along my shins. I can see the swelling, not to much, but I feel it more than see it, like a
balloon with too much air. Except this balloon is filled with water, and the skin is tight, and a cool purplish hue. Thank god for my dog Dory, I
massage her furry coat to loosen the stiffness of my fingers. She loves that and I do too. Almost makes me glad they hurt, so she gets her
morning petting. When the coffee is done I fix my first cup. Cream and sugar, and it tastes good. I wish coffee would magically appear ready
made in the morning. I shuffle to the couch and sip, and sip some more, some mornings I will sit on the patio and smoke a cigarette, though I wish
I could quit. Then it comes, the slight pain, the urgency, and its of to the bathroom. As I walk I notice the limp, legs aren’t up yet, they take a while,
and I can only say that it feels like walking on two sprained ankles. And I walk with the purpose of having them not give out on me and buckle. The
rest needs no explaining , a rotten awful feeling that leaves me sometimes breathless and shaky. And off to the couch to get some rest.
This is waking up with aids
November 24th,2007
It’s such an effort, getting up in the morning. When I swing my legs over the edge of the bed, I feel a small burst of cool air, washing over the fire
of my feet and ankles. Momentary, and fleeting, but a bit of relief nonetheless. As I walk to the kitchen to make my coffee, I feel as if my legs are
wooden, and I walk with a thudding that sends shivers along my shins. I can see the swelling, not to much, but I feel it more than see it, like a
balloon with too much air. Except this balloon is filled with water, and the skin is tight, and a cool purplish hue. Thank god for my dog Dory, I
massage her furry coat to loosen the stiffness of my fingers. She loves that and I do too. Almost makes me glad they hurt, so she gets her
morning petting. When the coffee is done I fix my first cup. Cream and sugar, and it tastes good. I wish coffee would magically appear ready
made in the morning. I shuffle to the couch and sip, and sip some more, some mornings I will sit on the patio and smoke a cigarette, though I wish
I could quit. Then it comes, the slight pain, the urgency, and its of to the bathroom. As I walk I notice the limp, legs aren’t up yet, they take a while,
and I can only say that it feels like walking on two sprained ankles. And I walk with the purpose of having them not give out on me and buckle. The
rest needs no explaining , a rotten awful feeling that leaves me sometimes breathless and shaky. And off to the couch to get some rest.
This is waking up with aids
November 24th,2007
I am nobody
I am not famous
I have no special talent
I am not you
I am nobody
And I have AIDS
You could be me if your not careful
And your not
You could be famous
You could have some special talent
You could be somebody
And then you could get AIDS
To many people still get infected
Every single day
Why don’t you speak out
Teach a somebody with a future
Before they become like me
I should speak out
I should find my special talent
I should become famous
I should tell people about AIDS
I am not famous
I have no special talent
I am not you
I am nobody
And I have AIDS
You could be me if your not careful
And your not
You could be famous
You could have some special talent
You could be somebody
And then you could get AIDS
To many people still get infected
Every single day
Why don’t you speak out
Teach a somebody with a future
Before they become like me
I should speak out
I should find my special talent
I should become famous
I should tell people about AIDS
So you have an incurable disease
So you have an incurable disease. Now what? Well, it would seem that it’s easy to pick a course
of action. You know, go to the doctor, find out what you need to do, and do it. That way you can live.
Simple right. I wish it were. You see it depends on the disease. I have AIDS. AIDS is not a simple
disease. Not to mention the fact the there are people on this planet who think I should die and burn
in hell simply because this is what I have. That’s ok, I think that they should die and burn in hell in
return.
It was quite a traumatic experience being told what I have. It was definitely the last thing I ever
thought I would have. In April of 2003 I began having several Medical problems, I was seeing the
doctor quite regularly and for 3 months I had them all stumped as to what could possibly be wrong
with me. Referrals for this test and that specialist came and went and those around me noticed my
health slipping away. In July I wound up admitted to the hospital with high fever, pain and an overall
non ability to function at all. The emergency room Dr. after a few hours told us that I may have
something called multiple myeloma and that I would be staying in the hospital for a while. For the
next three days I had an army of specialists trying to confirm diagnosis after diagnosis as I kept
getting sicker and sicker. I was told by a cancer specialist that one test was not right for this multiple
myeloma and for that I should be happy. I was. I had been in the hospital for a week , and was now
in isolation, everyone wearing masks and gloves at all times to protect me and my anxiety level was
high.
It was July 8th 2003, in the evening as I was lying in my bed when the Dr. came to see me. I had the
room dark and was waiting for my wife to visit. I joked with him that I should put a mask on to so we
can both look silly together. However their was no joking in his eyes. I asked what was wrong and
he said he has diagnosed my illness.
My Dr. said,” You are infected with the HIV virus and have AIDS. You are very sick and the disease
is very advanced.”
I was completely overwhelmed, I sobbed, how in the world could this happen to me? It just wasn’t
possible. The Dr. stood silently as I regained my composer and my first statement to him was “ So I
am going to die?” He said you don’t have too. He told me, “ If you don’t do exactly as we tell you and
do not make every effort possible for recovery and be strong you could die anytime in the next 3 to
6 months. If you do exactly as you are told and accept the treatments and follow all our advice and
treatment you can live a normal and long life just like anyone else. He told me That I need to focus
on making that commitment tonight because recovery would be difficult to start. He told me based
on his diagnosis I have probably had the HIV virus for ten years or more and that my body was
damaged and unable to fight any more. He left me with the promise of seeing another specialist
first thing in the morning and a very sad look on his face as he said I am very sorry to have to give
you this news.
Alone to my thoughts I broke down completely, How could I have AIDS? That’s a disease for
others, I feared for my wife , what about her health?, I found myself wishing for cancer, anything but
this. When my wife found me that evening we talked, there was tears and hugs, we shared our
feelings and our fears, The hospital staff let her stay the whole night by my side and together we
made that commitment that my Dr. asked me for. I was going to fight for my life. As the promised
specialist arrived in the morning and began explaining my condition and when treatment would
start and all the particulars I prepared myself for it all to begin that evening.
A curious thing began to happen immediately. I was counseled to be careful who I told , that I may
want to wait to tell my parents, family, friends who had all been to visit and were all terribly worried
about me. I was told that AIDS has social consequences that I could deal with later, for now just
concentrate on your health. My mind was struggling, I told my family anyway, they were supportive
and loving and have remained so.
That evening I was started on medications to begin to reverse the disease process that had been
taking its toll for ten years now. With everything happening at once , visitors, medicines, nurses, my
body went into shock, My body it seemed, had had enough, I spiked a high fever, my blood
pressure dropped off the charts and I spent the next 3 days in intensive care struggling to survive.
Well I made it through and went home a few days later. I was glad to be out of the hospital. My wife
had brought me a burger from Carl’s Junior and I ate it on the way home. As soon as we got home
the first difficulty of having AIDS came right up. Treatment for this disease requires strict adherence
to medications that must be taken at certain times and never missed. I had several prescriptions to
fill that night so that starting the next morning I would not miss my next doses. Melanie dutifully went
in search of filling them after making sure I was propped up properly on the couch and didn’t need a
thing. She soon discovered that these medications are not readily available. Our normal pharmacy
did not have any of the drugs in stock. The pharmacist on duty agreed to order them for the future
as Melanie explained our situation. He also suggested that she try Loma Linda Medical Center. This
hospital is about 40 minutes away. Luckily they had everything we needed and I was set for the
morning to take my pills.
Taking pills. What fun. I have taken pill after pill after pill since being diagnosed with AIDS. If it didn’t
come in a pill I drank it. I have since added inhaling medicine and medicine that you rub on. I have
truly become a walking pharmacy. I am proud to report that I have not missed in a single dose.
However, these medicines have their price. I have developed tremors and shake all the time. My
wife and I laugh at it. She calls me “Shaky”. I warn people when I eat with them that I may throw
food at them but I really won’t mean it. It does give me the opportunity to actually throw food if I want
to and have an excuse. I haven’t tried that yet but I am going to one day I am sure. Some people
find it appalling that we joke about it. After all it looks strange to watch someone shaking with a fork
full of food that winds up with most of it off the fork by the time I gets to my mouth. I have made
some huge messes depending on what I am eating. Rice is good for that and so is chips and dip. I
really hope I can make it through all this. The pills, the shakes, and probably my worst fear…..what
will people think of me when they find out?
September 26,2003
So you have an incurable disease. Now what? Well, it would seem that it’s easy to pick a course
of action. You know, go to the doctor, find out what you need to do, and do it. That way you can live.
Simple right. I wish it were. You see it depends on the disease. I have AIDS. AIDS is not a simple
disease. Not to mention the fact the there are people on this planet who think I should die and burn
in hell simply because this is what I have. That’s ok, I think that they should die and burn in hell in
return.
It was quite a traumatic experience being told what I have. It was definitely the last thing I ever
thought I would have. In April of 2003 I began having several Medical problems, I was seeing the
doctor quite regularly and for 3 months I had them all stumped as to what could possibly be wrong
with me. Referrals for this test and that specialist came and went and those around me noticed my
health slipping away. In July I wound up admitted to the hospital with high fever, pain and an overall
non ability to function at all. The emergency room Dr. after a few hours told us that I may have
something called multiple myeloma and that I would be staying in the hospital for a while. For the
next three days I had an army of specialists trying to confirm diagnosis after diagnosis as I kept
getting sicker and sicker. I was told by a cancer specialist that one test was not right for this multiple
myeloma and for that I should be happy. I was. I had been in the hospital for a week , and was now
in isolation, everyone wearing masks and gloves at all times to protect me and my anxiety level was
high.
It was July 8th 2003, in the evening as I was lying in my bed when the Dr. came to see me. I had the
room dark and was waiting for my wife to visit. I joked with him that I should put a mask on to so we
can both look silly together. However their was no joking in his eyes. I asked what was wrong and
he said he has diagnosed my illness.
My Dr. said,” You are infected with the HIV virus and have AIDS. You are very sick and the disease
is very advanced.”
I was completely overwhelmed, I sobbed, how in the world could this happen to me? It just wasn’t
possible. The Dr. stood silently as I regained my composer and my first statement to him was “ So I
am going to die?” He said you don’t have too. He told me, “ If you don’t do exactly as we tell you and
do not make every effort possible for recovery and be strong you could die anytime in the next 3 to
6 months. If you do exactly as you are told and accept the treatments and follow all our advice and
treatment you can live a normal and long life just like anyone else. He told me That I need to focus
on making that commitment tonight because recovery would be difficult to start. He told me based
on his diagnosis I have probably had the HIV virus for ten years or more and that my body was
damaged and unable to fight any more. He left me with the promise of seeing another specialist
first thing in the morning and a very sad look on his face as he said I am very sorry to have to give
you this news.
Alone to my thoughts I broke down completely, How could I have AIDS? That’s a disease for
others, I feared for my wife , what about her health?, I found myself wishing for cancer, anything but
this. When my wife found me that evening we talked, there was tears and hugs, we shared our
feelings and our fears, The hospital staff let her stay the whole night by my side and together we
made that commitment that my Dr. asked me for. I was going to fight for my life. As the promised
specialist arrived in the morning and began explaining my condition and when treatment would
start and all the particulars I prepared myself for it all to begin that evening.
A curious thing began to happen immediately. I was counseled to be careful who I told , that I may
want to wait to tell my parents, family, friends who had all been to visit and were all terribly worried
about me. I was told that AIDS has social consequences that I could deal with later, for now just
concentrate on your health. My mind was struggling, I told my family anyway, they were supportive
and loving and have remained so.
That evening I was started on medications to begin to reverse the disease process that had been
taking its toll for ten years now. With everything happening at once , visitors, medicines, nurses, my
body went into shock, My body it seemed, had had enough, I spiked a high fever, my blood
pressure dropped off the charts and I spent the next 3 days in intensive care struggling to survive.
Well I made it through and went home a few days later. I was glad to be out of the hospital. My wife
had brought me a burger from Carl’s Junior and I ate it on the way home. As soon as we got home
the first difficulty of having AIDS came right up. Treatment for this disease requires strict adherence
to medications that must be taken at certain times and never missed. I had several prescriptions to
fill that night so that starting the next morning I would not miss my next doses. Melanie dutifully went
in search of filling them after making sure I was propped up properly on the couch and didn’t need a
thing. She soon discovered that these medications are not readily available. Our normal pharmacy
did not have any of the drugs in stock. The pharmacist on duty agreed to order them for the future
as Melanie explained our situation. He also suggested that she try Loma Linda Medical Center. This
hospital is about 40 minutes away. Luckily they had everything we needed and I was set for the
morning to take my pills.
Taking pills. What fun. I have taken pill after pill after pill since being diagnosed with AIDS. If it didn’t
come in a pill I drank it. I have since added inhaling medicine and medicine that you rub on. I have
truly become a walking pharmacy. I am proud to report that I have not missed in a single dose.
However, these medicines have their price. I have developed tremors and shake all the time. My
wife and I laugh at it. She calls me “Shaky”. I warn people when I eat with them that I may throw
food at them but I really won’t mean it. It does give me the opportunity to actually throw food if I want
to and have an excuse. I haven’t tried that yet but I am going to one day I am sure. Some people
find it appalling that we joke about it. After all it looks strange to watch someone shaking with a fork
full of food that winds up with most of it off the fork by the time I gets to my mouth. I have made
some huge messes depending on what I am eating. Rice is good for that and so is chips and dip. I
really hope I can make it through all this. The pills, the shakes, and probably my worst fear…..what
will people think of me when they find out?
September 26,2003
July 5th,2004