A brief word should be said about the physical side effects Prednisone. It is a long list. Prednisone can cause leukemia, a heart attack or stroke, diabetes, and osteoporosis. My real world life comes to a complete stop when I’m in treatment. Any projects that I was working on are cancelled or postponed indefinitely. If I’m in a relationship then that usually goes away. I can not be in sunlight for Sarcoid thrives on vitamin D and the Prednisone greatly increases the risk of skin cancer. In short, I think it is fair to say that Prednisone is absolutely debilitating. The emotional and psychological effects are a wholly different matter indeed.
Prednisone is psychotropic; like snorting cocaine and doing window pane all day, every day, for months at a time. There is actually a form of Prednisone psychosis, which I’ve had the bad fortune to experience time and again.
None of this was ever explained to me. 20 years ago when I started my first treatment, I remember my doctor telling me that the drug might make me feel “a bit nutty.” During my first experience on Prednisone my level of “nuttiness was devastating, yet I was largely oblivious to how drastically my behavior changed. It wasn’t until 2002, after 10 years of remission, when Sarcoid returned and I was able to fully appreciate just how out of control I became.
One of the reasons it has such immediate and powerful effects is that Prednisone artificially supplements your body with adrenalin. You get a double dose. Eventually your adrenal gland shuts down. This is one why getting off of Prednisone has to be a done as a gradual weaning, in order to give your body a chance to readjust. This problem is compounded if you begin weaning too soon and the Sarcoid comes back. This last year has seen me continuously raising and lowering the dose, and it has been a tremendous shock to my body.
On Prednisone I am potentially a danger to myself and others at all time. As I’ve gotten older, I’ve learned to put myself in an environment where I can feel safe and do as little damage as possible. During this latest episode I have chosen exile. I never leave my home, unless it was to go to a friendly place. I have someone do my grocery shopping; I have friends take me to all my medical appointments. I have basically been living under self-imposed house arrest since August of 2008. It’s better for me and it’s better for the outside world. But twenty years ago, I ran amok, completely oblivious that I had crossed the line without blinking.
Prednisone initially creates the illusion that you are feeling much better than you actually are. It induces a powerful sense of euphoria and also makes you extraordinarily manic and compulsive. I do the work of 10 men during this phase. I stop sleeping. What I’ve learned, and very much the hard way, to do while in exile is to keep my mind as continuously occupied as I can. I tackle long term “rainy day” projects that one would never have the time to do otherwise. For example, this last year I realized that most of my Yaqi videos had been made before the high definition revolution and the quality of my clips, while perfectly fine when I originally made them, were now dated. So I went back to all my original footage and reedited every single one of my clips and compressed them at a significantly higher resolution, using software that was unavailable when I originally created them. This was an immense, 18 hours a day, 6 month undertaking that would seem untenable to anyone not in a manic state of mind. I was able to harness the energy of Prednisone and do something productive that has helped my clip stores tremendously.
I bought in to the Prednisone deception when I got sick for the first time. I should have taken a year off and allowed my body to heal. Instead I went straight back to work. I was determined, fueled by the illusion of wellness, not to slow down in the slightest. I was a producer for a large film production facility and we had the entire floor in a building. After about a week of treatment, whenever the phone rang, and a great deal of the time it was not for me, I would run and hide in the stairwell because I was becoming paranoid of every one. I felt extremely persecuted for reasons that I cannot fathom now. I started carrying a 9mm Barreta, loaded and cocked in my briefcase. I felt the world was hostile to me. As disturbing as this sounds, it seemed perfectly reasonable to me.
Over the last year I have been plagued with aural and visual hallucinations that begin the moment I get into bed. I no longer seem to have hallucinations during the daytime, but these experiences have largely contributed to making sleep impossible.
Shortly after I get into bed, the aural hallucinations begin. The voices are loud; often spoken by someone right up next to my ear. For instance I constantly hear an elderly southern woman talking into my right ear. She goes on and on about Millie’s wedding gown and all the aesthetic mistakes she made in buying it. I also heard an interminable long debate by 2 men in my left ear talking in a language I do not understand.
My dreams are also hallucinatory and indistinguishable from my waking state. It’s like my brain has been hooked into the Matrix and I am being fed images and sensation that are perfect illusions. The second I close my eyes the imagery begins, and I accept the images as reality and have no memory of closing my eyes. Normally when I dream I can never read the printed word. If, in the dream I am reading a book or a sign, the words are always blurred or illegible. I can read perfectly while in the Matrix. I move seamlessly from scenario to scenario, always believing that I am perfectly awake.
Then, as the chronic lack of sleep begins to take its toll, every time I sit down my eyes close. But again I don’t realize they are closed because I see widescreen Technicolor movies of the mind. It’s usually people, very strange looking people in elaborate outfits, the scenes, the sets and the backgrounds of the finest detail. Then something will snap me back to reality and I say “don’t close my eyes, don’t close my eyes” and they would close and I’d be back in the other reality, unaware.
My spatial memory deteriorates. I’ll walk into a familiar room and find it wholly changed. For instance a black sofa will become a wooden sitting chair, paintings will change, the color and texture of walls will change, and the layout and interior of my house will become so drastically different that I often have trouble finding the kitchen or bedroom. This is the sort of thing that really starts to confuse me.
It’s embarrassing to say to someone “Oh you finally painted your walls,” when the reality is that they are the same walls as before.
Once I was sitting on my patio drinking iced tea from a glass that was decorated with strange looking patterns. I found myself staring at the glass. One of the dot-like patterns jumped and moved to another area. At first I thought it was an insect. Then I thought there was a hollow layer inside the glass that allowed for movement. A neon red spark exploded from the glass. My eyes closed and I was staring directly into the blinding sunlight. I was in a cheap Mexican cantina next to a toothless, gaunt old man who holding a chicken that squawked loudly. I inferred from the man’s expression that I was in mid sentence, but I had no idea what I was saying or what had come before.
The old man looked into my eyes, but suddenly he wasn’t old and I could hear his thoughts. “You must return to your body at once,” he thought in halting Spanish.
I was suddenly out of breath. Gasping for air I opened my eyes and found myself fully clothed, in my shower, the room filled with thick steam. I got out in a hurry, dried off and changed my clothes. I then went out on to my patio. The ice in my tea had melted. I looked at my clock. 2 hours had passed.
Once I tried to go to the bank and even though it is less than a mile away, I got lost. Suddenly I did not know where I was going or how to get home. Then I got really scared because I had no idea of who I was. I had to pull into a gas station and look at my driver’s license to see what my name was and where I lived. The information on the license did not ring any bells. I stared at my face in the mirror for a good ten minutes watching it distort before my memory returned.
I sometimes experience sporadic hallucinations that interact with me. I am regularly visited by my father and a friend who died of cancer. One day during my 2002 treatment I had just gotten out of the shower, walked into my bedroom and saw my friend Jerimah, ten years dead, sitting at my computer. I was so unhinged that all I could do was to cover my privates with the towel. I looked at him. Our eyes locked and I said “You aren’t real.” I remember him laughing at me and saying “Well, if I’m not real then why are you talking to me, dumbass?”
In 2004 I had a half hour screaming fight with my dead father in which he berated me for being a horrible person. He was gravely angry with me, accusing me of wasting my life by being Yaqi, about how I had misused my talents and abilities, how much he regretted being my father. Every time I tried to answer him he just got angrier.
I remember being really upset when I learned that my friend was about to die of cancer. I had convoluted rage and I smashed a glass framed picture with my fist and spent the next hour making deep vertical gashes into my arm. It seemed to really help. I was so pleased with my therapy that I boasted loudly to the ER doctor who was putting god knows how many stitches in to my arm. I still find it hard to believe that they did not detain me in the psychiatric wing.
Over the years I’ve learned to handle myself in such situations. I never drive or go anywhere alone, unless it is for a spontaneous trip to the hospital. I’ve mastered the art of being invisible. In my earlier treatments, if someone was looking at me I might become overwhelmed by irrational paranoia. One day during my first treatment I was walking to my car and became convinced that a random person was after me. I could hear his thoughts. He wanted me dead. I got in my car and drove to Arizona, where I own property in the mountains, figuring I would be safe there. Next thing I knew I was waking up in my car at a rest stop about 100 miles into New Mexico.
Earlier I compared Prednisone to a psychotropic substances; and in every measurable way my body is addicted and dependent on it. How many months can one stay in a manic, euphoric, delusional state of mind? How long before your brain gets completely fried? Prednisone is like any addiction; eventually it becomes top heavy and you hit rock bottom. But even at that moment of clarity I have to continue taking it, day after day, month after month.
And that’s when the real fun begins.
Prednisone is psychotropic; like snorting cocaine and doing window pane all day, every day, for months at a time. There is actually a form of Prednisone psychosis, which I’ve had the bad fortune to experience time and again.
None of this was ever explained to me. 20 years ago when I started my first treatment, I remember my doctor telling me that the drug might make me feel “a bit nutty.” During my first experience on Prednisone my level of “nuttiness was devastating, yet I was largely oblivious to how drastically my behavior changed. It wasn’t until 2002, after 10 years of remission, when Sarcoid returned and I was able to fully appreciate just how out of control I became.
One of the reasons it has such immediate and powerful effects is that Prednisone artificially supplements your body with adrenalin. You get a double dose. Eventually your adrenal gland shuts down. This is one why getting off of Prednisone has to be a done as a gradual weaning, in order to give your body a chance to readjust. This problem is compounded if you begin weaning too soon and the Sarcoid comes back. This last year has seen me continuously raising and lowering the dose, and it has been a tremendous shock to my body.
On Prednisone I am potentially a danger to myself and others at all time. As I’ve gotten older, I’ve learned to put myself in an environment where I can feel safe and do as little damage as possible. During this latest episode I have chosen exile. I never leave my home, unless it was to go to a friendly place. I have someone do my grocery shopping; I have friends take me to all my medical appointments. I have basically been living under self-imposed house arrest since August of 2008. It’s better for me and it’s better for the outside world. But twenty years ago, I ran amok, completely oblivious that I had crossed the line without blinking.
Prednisone initially creates the illusion that you are feeling much better than you actually are. It induces a powerful sense of euphoria and also makes you extraordinarily manic and compulsive. I do the work of 10 men during this phase. I stop sleeping. What I’ve learned, and very much the hard way, to do while in exile is to keep my mind as continuously occupied as I can. I tackle long term “rainy day” projects that one would never have the time to do otherwise. For example, this last year I realized that most of my Yaqi videos had been made before the high definition revolution and the quality of my clips, while perfectly fine when I originally made them, were now dated. So I went back to all my original footage and reedited every single one of my clips and compressed them at a significantly higher resolution, using software that was unavailable when I originally created them. This was an immense, 18 hours a day, 6 month undertaking that would seem untenable to anyone not in a manic state of mind. I was able to harness the energy of Prednisone and do something productive that has helped my clip stores tremendously.
I bought in to the Prednisone deception when I got sick for the first time. I should have taken a year off and allowed my body to heal. Instead I went straight back to work. I was determined, fueled by the illusion of wellness, not to slow down in the slightest. I was a producer for a large film production facility and we had the entire floor in a building. After about a week of treatment, whenever the phone rang, and a great deal of the time it was not for me, I would run and hide in the stairwell because I was becoming paranoid of every one. I felt extremely persecuted for reasons that I cannot fathom now. I started carrying a 9mm Barreta, loaded and cocked in my briefcase. I felt the world was hostile to me. As disturbing as this sounds, it seemed perfectly reasonable to me.
Over the last year I have been plagued with aural and visual hallucinations that begin the moment I get into bed. I no longer seem to have hallucinations during the daytime, but these experiences have largely contributed to making sleep impossible.
Shortly after I get into bed, the aural hallucinations begin. The voices are loud; often spoken by someone right up next to my ear. For instance I constantly hear an elderly southern woman talking into my right ear. She goes on and on about Millie’s wedding gown and all the aesthetic mistakes she made in buying it. I also heard an interminable long debate by 2 men in my left ear talking in a language I do not understand.
My dreams are also hallucinatory and indistinguishable from my waking state. It’s like my brain has been hooked into the Matrix and I am being fed images and sensation that are perfect illusions. The second I close my eyes the imagery begins, and I accept the images as reality and have no memory of closing my eyes. Normally when I dream I can never read the printed word. If, in the dream I am reading a book or a sign, the words are always blurred or illegible. I can read perfectly while in the Matrix. I move seamlessly from scenario to scenario, always believing that I am perfectly awake.
Then, as the chronic lack of sleep begins to take its toll, every time I sit down my eyes close. But again I don’t realize they are closed because I see widescreen Technicolor movies of the mind. It’s usually people, very strange looking people in elaborate outfits, the scenes, the sets and the backgrounds of the finest detail. Then something will snap me back to reality and I say “don’t close my eyes, don’t close my eyes” and they would close and I’d be back in the other reality, unaware.
My spatial memory deteriorates. I’ll walk into a familiar room and find it wholly changed. For instance a black sofa will become a wooden sitting chair, paintings will change, the color and texture of walls will change, and the layout and interior of my house will become so drastically different that I often have trouble finding the kitchen or bedroom. This is the sort of thing that really starts to confuse me.
It’s embarrassing to say to someone “Oh you finally painted your walls,” when the reality is that they are the same walls as before.
Once I was sitting on my patio drinking iced tea from a glass that was decorated with strange looking patterns. I found myself staring at the glass. One of the dot-like patterns jumped and moved to another area. At first I thought it was an insect. Then I thought there was a hollow layer inside the glass that allowed for movement. A neon red spark exploded from the glass. My eyes closed and I was staring directly into the blinding sunlight. I was in a cheap Mexican cantina next to a toothless, gaunt old man who holding a chicken that squawked loudly. I inferred from the man’s expression that I was in mid sentence, but I had no idea what I was saying or what had come before.
The old man looked into my eyes, but suddenly he wasn’t old and I could hear his thoughts. “You must return to your body at once,” he thought in halting Spanish.
I was suddenly out of breath. Gasping for air I opened my eyes and found myself fully clothed, in my shower, the room filled with thick steam. I got out in a hurry, dried off and changed my clothes. I then went out on to my patio. The ice in my tea had melted. I looked at my clock. 2 hours had passed.
Once I tried to go to the bank and even though it is less than a mile away, I got lost. Suddenly I did not know where I was going or how to get home. Then I got really scared because I had no idea of who I was. I had to pull into a gas station and look at my driver’s license to see what my name was and where I lived. The information on the license did not ring any bells. I stared at my face in the mirror for a good ten minutes watching it distort before my memory returned.
I sometimes experience sporadic hallucinations that interact with me. I am regularly visited by my father and a friend who died of cancer. One day during my 2002 treatment I had just gotten out of the shower, walked into my bedroom and saw my friend Jerimah, ten years dead, sitting at my computer. I was so unhinged that all I could do was to cover my privates with the towel. I looked at him. Our eyes locked and I said “You aren’t real.” I remember him laughing at me and saying “Well, if I’m not real then why are you talking to me, dumbass?”
In 2004 I had a half hour screaming fight with my dead father in which he berated me for being a horrible person. He was gravely angry with me, accusing me of wasting my life by being Yaqi, about how I had misused my talents and abilities, how much he regretted being my father. Every time I tried to answer him he just got angrier.
I remember being really upset when I learned that my friend was about to die of cancer. I had convoluted rage and I smashed a glass framed picture with my fist and spent the next hour making deep vertical gashes into my arm. It seemed to really help. I was so pleased with my therapy that I boasted loudly to the ER doctor who was putting god knows how many stitches in to my arm. I still find it hard to believe that they did not detain me in the psychiatric wing.
Over the years I’ve learned to handle myself in such situations. I never drive or go anywhere alone, unless it is for a spontaneous trip to the hospital. I’ve mastered the art of being invisible. In my earlier treatments, if someone was looking at me I might become overwhelmed by irrational paranoia. One day during my first treatment I was walking to my car and became convinced that a random person was after me. I could hear his thoughts. He wanted me dead. I got in my car and drove to Arizona, where I own property in the mountains, figuring I would be safe there. Next thing I knew I was waking up in my car at a rest stop about 100 miles into New Mexico.
Earlier I compared Prednisone to a psychotropic substances; and in every measurable way my body is addicted and dependent on it. How many months can one stay in a manic, euphoric, delusional state of mind? How long before your brain gets completely fried? Prednisone is like any addiction; eventually it becomes top heavy and you hit rock bottom. But even at that moment of clarity I have to continue taking it, day after day, month after month.
And that’s when the real fun begins.
