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Friday, July 30, 2010
Thursday, July 29, 2010
Wednesday, July 28, 2010
Tuesday, July 27, 2010
between hammer & anvil
To new friends and old friends:
My health is forcing me to change how I communication with you at this time.
My primary battles are against 3 serious tick-borne infectious diseases that have been entrenched for more than three decades: Babesiosis, Bartonella and Lyme. Since 1995, I've survived infectious endocarditis, atrial fibrillation, an electrical change in the rhythm of my heart rhythm that required an invasive procedure to "solder," extreme high-low swings of pulse, similar extreme swings in blood pressure, in addition to bouts of life-threatening infectious diseases.
After 13 months of anti-malarial medications, I seem to have pushed back the Babesias. Babesiosis is similar to malaria, and treated with the same medications, which are "ototoxic--they cause toxic damage in the brain that can cause ringing in the ears, vertigo, hearing loss or deafness.
I wasn't worried about losing my hearing. My body recalls the vibratory memory of Deaf generations united inside Gallaudet University's gymnasium--everyone on their feet, rhythmically stomping the wooden bleachers underfoot, demanding in signed language (ASL) as one: "Deaf president now!" My experiences with Deaf languages, cultures and struggles have enriched my life and understanding, enhanced my visual awareness, and has had an impact on my own self-expression.
The medicines left me with only mild hearing loss. However, the toxic drug damage left me with excruciating pain and high-frequency noise in my ears.
Bartonella treatments also rely on antibiotics which are similar in their damage, and could quickly or gradually increase the pain and noise to even more unbearable heights, removing all quality of life. I'm already the threshold of pain that I can endure, in my ears and my body as a whole. So when I decided not to begin medication for Bartonella, the decision was based on longevity with quality of life.
Recently, however, I'm experiencing cardiac problems again. Both Bartonella and Lyme infections do damage to my heart. So after much consultation with my doctor and Minnie Bruce, I will be beginning treatment for Bartonella in early September with the least damaging antibiotic.
I have a lot of preparatory work to do. And I need to change the way I'm working and communicating right away. I have to leave my language-driven work, including attempts at analytical reading and writing, spoken and written dialogue. That part of my brain is a painful and frustrating workspace that engages my central nervous system and leaves me weight wasting. Instead, I will be continuing to make photographs, develop and print them.
I flickr'd up a new photo I call "point of view" to share with you this morning on my online stream of photographs this morning:
http://www.flickriver.com/photos/transgenderwarrior/
I will try to upload a photo each morning in order to communicate with you and to stay connected.
I have also been writing something about information you may never have read before about the Lyme epidemic. I've been working on it over the last year and I am trying to finish it before my Bartonella treatment begins. Look for: "Casualty of an undeclared war."
solidarity in struggle,
Leslie
my flickr photo sets: http://www.flickr.com/photos/transgenderwarrior/sets/
My health is forcing me to change how I communication with you at this time.
My primary battles are against 3 serious tick-borne infectious diseases that have been entrenched for more than three decades: Babesiosis, Bartonella and Lyme. Since 1995, I've survived infectious endocarditis, atrial fibrillation, an electrical change in the rhythm of my heart rhythm that required an invasive procedure to "solder," extreme high-low swings of pulse, similar extreme swings in blood pressure, in addition to bouts of life-threatening infectious diseases.
After 13 months of anti-malarial medications, I seem to have pushed back the Babesias. Babesiosis is similar to malaria, and treated with the same medications, which are "ototoxic--they cause toxic damage in the brain that can cause ringing in the ears, vertigo, hearing loss or deafness.
I wasn't worried about losing my hearing. My body recalls the vibratory memory of Deaf generations united inside Gallaudet University's gymnasium--everyone on their feet, rhythmically stomping the wooden bleachers underfoot, demanding in signed language (ASL) as one: "Deaf president now!" My experiences with Deaf languages, cultures and struggles have enriched my life and understanding, enhanced my visual awareness, and has had an impact on my own self-expression.
The medicines left me with only mild hearing loss. However, the toxic drug damage left me with excruciating pain and high-frequency noise in my ears.
Bartonella treatments also rely on antibiotics which are similar in their damage, and could quickly or gradually increase the pain and noise to even more unbearable heights, removing all quality of life. I'm already the threshold of pain that I can endure, in my ears and my body as a whole. So when I decided not to begin medication for Bartonella, the decision was based on longevity with quality of life.
Recently, however, I'm experiencing cardiac problems again. Both Bartonella and Lyme infections do damage to my heart. So after much consultation with my doctor and Minnie Bruce, I will be beginning treatment for Bartonella in early September with the least damaging antibiotic.
I have a lot of preparatory work to do. And I need to change the way I'm working and communicating right away. I have to leave my language-driven work, including attempts at analytical reading and writing, spoken and written dialogue. That part of my brain is a painful and frustrating workspace that engages my central nervous system and leaves me weight wasting. Instead, I will be continuing to make photographs, develop and print them.
I flickr'd up a new photo I call "point of view" to share with you this morning on my online stream of photographs this morning:
http://www.flickriver.com/photos/transgenderwarrior/
I will try to upload a photo each morning in order to communicate with you and to stay connected.
I have also been writing something about information you may never have read before about the Lyme epidemic. I've been working on it over the last year and I am trying to finish it before my Bartonella treatment begins. Look for: "Casualty of an undeclared war."
solidarity in struggle,
Leslie
my flickr photo sets: http://www.flickr.com/photos/transgenderwarrior/sets/
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