I got dilated Monday, or rather my eyes got dilated. The new doctor I have been seeing is pretty good and came recommended by a tenant. This appointment was the first in almost two months, and the time in between has not been kind to the old peepers. This seems the right time to go over how my sight is these days before I continue on the track of how I got here.
Simply put, things are bad with a complication of advancing retinapathy and a lot of gunk in the central eye cavity.
The retinapathy is darkening things on its own. What I left in the ongoing narrative has closed in past the borders of the cataract lense. Things progressed past the point of floors looking wavy. I look at the glowing rectangle of the TV and the entire box is warped.
Flashers streak by with some regularity, most often when a light change hits the eye, often even when the lid is closed.
Floaters could be from the retinapathy or the vitreous hemorrhage or both. They swum in and out of my vision with regularity.
Other problems remain the domain of the hemorrhage, lingering effects of the blood that poured into my eye after that fateful dose of Cialis that I never took advantage of.
My color sense in the eye is all but gone. I see reds best, then blues. I know this is not a retinapathy thing from my own experience. If I switch to looking at the TV through the dark-blind eye, the colors are spectacular through that cataract-clouded pinhole.
Distance refocusing remains a problem that has also gotten worse. I cannot focus near-sightedness at all. That magnifying glass I occasionally wear doesn’t help. Even with the glasses I make out what kind of soup is in the can by word shape rather than actual reading. Things smaller than that have become outright impossible to achieve and torturous to try.
Light is also an active memory. There’s too much or not enough in most circumstances. Street lights are too bright to look at, yet it seems that none of their brightness reaches the ground. Judging from the peculiarities of the dark eye, this is also well beyond just retinapathy. My pupil is not working right. When light hits it, the whole eye glows even after the source of light has diminished.
A while back my roommate noticed that I can’t even pretend that I’m not blind anymore. Things have gotten significantly worse even in the time since I started this blog.
Further surgery is inevitable and something I am gung ho to do. The plan is retina re-attachment and vitreous gel draining. There’s just some other logistical complications that need to be worked out first.
Nothing is stated here to promote woe is me sympathy, but to answer the bigger questions of what I can see now. Everything is in overexposed shadow seen through dense fog. Acquaintances need to understand that I cannot often recognize who I am talking to at first. I can do less when my eye gets tired, so everything is slower. I’, not without my successes, but they require more and ever more effort to achieve.
Wednesday, November 30, 2011
Sunday, November 27, 2011
Sloshing thru the Muck
I really want to maintain some kind of positive balance, to say something nice (but true) about any doctor I mention here as I go over my experiences with each in this long, crazy account of going blind.
When it comes to Deborah Schlossman, I can’t. I want to Joslin Diabetes Center for a fresh start and to resume monitoring the failing eye and perhaps find treatments to save what I could.
Instead, the records I had sent were not to be found and I met Dr Schlossman
She concentrated on the long-dark eye that I said was a secondary concern compared to the active diminishment in the left eye.
Her treatment held little more than an appointment to see her again some other time.
She utterly failed to listen to her patient’s concerns and had left the building for the day at noon before the technician could photograph my eyes..
She put notes I my records that indicated she had seen and spoken with me far more extensively than she actually did, including medical precautions of do’s and don’t’s that she never said to me. I still wonder id this was some kind of medical malpractice buffer or if she was just "proving" to her bosses at Joslin that she is some great employee rather than the lazy hack she proved herself to be to me.
I’ve worked in plenty of places where the good employees compensated for the useless ones, so perhaps I should not be surprised that the medical profession has its share as well.
As one of two other Joslin doctors who saw me that same day, Doctor Paul Arrigg compensated for Schlossman. Nothing could be done about the missing records, but I maintained hope that actually having looked at the eye would restart the Joslin experience in a good way.
When it comes to Deborah Schlossman, I can’t. I want to Joslin Diabetes Center for a fresh start and to resume monitoring the failing eye and perhaps find treatments to save what I could.
Instead, the records I had sent were not to be found and I met Dr Schlossman
She concentrated on the long-dark eye that I said was a secondary concern compared to the active diminishment in the left eye.
Her treatment held little more than an appointment to see her again some other time.
She utterly failed to listen to her patient’s concerns and had left the building for the day at noon before the technician could photograph my eyes..
She put notes I my records that indicated she had seen and spoken with me far more extensively than she actually did, including medical precautions of do’s and don’t’s that she never said to me. I still wonder id this was some kind of medical malpractice buffer or if she was just "proving" to her bosses at Joslin that she is some great employee rather than the lazy hack she proved herself to be to me.
I’ve worked in plenty of places where the good employees compensated for the useless ones, so perhaps I should not be surprised that the medical profession has its share as well.
As one of two other Joslin doctors who saw me that same day, Doctor Paul Arrigg compensated for Schlossman. Nothing could be done about the missing records, but I maintained hope that actually having looked at the eye would restart the Joslin experience in a good way.
Saturday, November 26, 2011
Rights to Records
I first went to the eye clinic in Boston’s Joslin Center during the summer of 2010. The new course of treatment I had planned did not start well. Records I had sent in advance were missing; Doctor Deborah Schlossman met with me long enough to only make a future appointment to coordinate procedures on the dark-blind eye in coordination with another doctor and had sent me on my way without discussing the more immediate problem of my faltering left eye. I was not dissatisfied with that situation and let the desk know it. As far as IU was concerned, I had not been treated or examined for the problems I had gone there for, and I insisted on seeing a doctor who would actually treat me. They accommodated.
This took time. I ended up at the clinic for hours, mostly waiting in an examination room while doctors with their own caseloads had to accommodate for Deborah Schlossman’s rush to leave for the day at lunchtime.
The time alone in the room with the records Schlossman had created showed me that Schlossman’s misconduct exceeded ordinary laziness.
She had stated in those records that she had discussed the left eye with me, including a notation that she had told me not to lift anything heavy.
That detail could have sent me berserk. I had been told nothing of the sort, I had been trying to get back into my work, which often included physical exertion throughout the day. Such a note had been put in my record without it being discussed with me; I did not even know what her definition of "heavy" would be or what limits I should try to impose on myself.
The take away for the readers here is this: you have every right to access your own medical records. You should exercise this right and be aware of what your doctors are not telling you, as well as things they might add only in a way that might make it easy to forget among the course of a longer examination.
If the doctor or facilities deny you this right or want to impose additional hefty fees for this, you should start looking for other treatment. It will only get worse from there.
This took time. I ended up at the clinic for hours, mostly waiting in an examination room while doctors with their own caseloads had to accommodate for Deborah Schlossman’s rush to leave for the day at lunchtime.
The time alone in the room with the records Schlossman had created showed me that Schlossman’s misconduct exceeded ordinary laziness.
She had stated in those records that she had discussed the left eye with me, including a notation that she had told me not to lift anything heavy.
That detail could have sent me berserk. I had been told nothing of the sort, I had been trying to get back into my work, which often included physical exertion throughout the day. Such a note had been put in my record without it being discussed with me; I did not even know what her definition of "heavy" would be or what limits I should try to impose on myself.
The take away for the readers here is this: you have every right to access your own medical records. You should exercise this right and be aware of what your doctors are not telling you, as well as things they might add only in a way that might make it easy to forget among the course of a longer examination.
If the doctor or facilities deny you this right or want to impose additional hefty fees for this, you should start looking for other treatment. It will only get worse from there.
Eye Climic at Joslin Diabetes Center
Although I had decided I would not go to Koch Eye Associates again, I needed to have the eye monitored and tracked. I had been done badly by Koch and had been disillusioned by the Rhode Island doctor who is considered best, Harold Woodcomb. I had also been disillusioned by Massachusetts Eye and Ear. When I get disillusioned, I walk away.
I chose to go to the eye clinic at Joslin Center. They’re rated as one of the best diabetes hospitals in the world. I had enough problems and paid for all medical expenses out of pocket, so I did not want to waste time and money shopping around for second rate doctors.
Yet again, I was off to a rocky start.
The technician who made the preliminary exam stated they could not find the medical records that I had e-mailed to them when I made the appointment, so Joslin would be running with no documented history.
I saw Doctor Deborah K. Schlossman late on a Friday morning. I had high hopes in going there.
Doctor Schlossman looked things over quickly after I told her the circumstances that had brought me to Joslin. I bit my lip when she seemed to concentrate on the long "dead" right eye with plans of what might be done for it. I might have been more eager to hear those plans if she had made any reference as to what could be done for the problematic left eye. I was more interested in preventing further loss of vision than getting greedy to seize what I could for the right eye. He plans amounted to cataract surgery on the right eye and retinal re-attachment and instructions that IU make an appointment with her in conjunction with one of Joslin’s cataract doctors. She then sent me in to photography.
When the photographer had done her thing, she told me to have a nice weekend.
Imagine my surprise that Dr Schlossman hadn’t planned on looking over the photographs of my mangles eyes and going over her assessment of the left eye with me.
Imagine the photographer’s surprise when I told her that I had come for treatment for the left eye and that I wasn’t leaving without some. Confusion ensued, in part because Dr Schlossman had left for the day immediately after seeing me.
While I do not know the specifics, I was not the only patient upset with Schlossman that day. The photographer told another patient something along the lines of "You can join Mr. Kozzi with that complaint."
I heard that while waiting to be squeezed in by another doctor, and it made me think that at least this time I had some independent clue at the time that it wasn’t just me.
Not that the thought provided any relief....
I chose to go to the eye clinic at Joslin Center. They’re rated as one of the best diabetes hospitals in the world. I had enough problems and paid for all medical expenses out of pocket, so I did not want to waste time and money shopping around for second rate doctors.
Yet again, I was off to a rocky start.
The technician who made the preliminary exam stated they could not find the medical records that I had e-mailed to them when I made the appointment, so Joslin would be running with no documented history.
I saw Doctor Deborah K. Schlossman late on a Friday morning. I had high hopes in going there.
Doctor Schlossman looked things over quickly after I told her the circumstances that had brought me to Joslin. I bit my lip when she seemed to concentrate on the long "dead" right eye with plans of what might be done for it. I might have been more eager to hear those plans if she had made any reference as to what could be done for the problematic left eye. I was more interested in preventing further loss of vision than getting greedy to seize what I could for the right eye. He plans amounted to cataract surgery on the right eye and retinal re-attachment and instructions that IU make an appointment with her in conjunction with one of Joslin’s cataract doctors. She then sent me in to photography.
When the photographer had done her thing, she told me to have a nice weekend.
Imagine my surprise that Dr Schlossman hadn’t planned on looking over the photographs of my mangles eyes and going over her assessment of the left eye with me.
Imagine the photographer’s surprise when I told her that I had come for treatment for the left eye and that I wasn’t leaving without some. Confusion ensued, in part because Dr Schlossman had left for the day immediately after seeing me.
While I do not know the specifics, I was not the only patient upset with Schlossman that day. The photographer told another patient something along the lines of "You can join Mr. Kozzi with that complaint."
I heard that while waiting to be squeezed in by another doctor, and it made me think that at least this time I had some independent clue at the time that it wasn’t just me.
Not that the thought provided any relief....
Thursday, November 24, 2011
Summer 2010, My Golden Age of Blindness
Through Spring, Summer and Fall of 2010, my vision got steadily better as my eye recovered from the Cialis-induced hemorrhage. The retinapathy that started with the PRP treatment advanced, but stopped at the border of the artificial lense put into my eye to fix the cataract. Glasses helped me read again, an ability I’d lost because Dr. God had, without patient consultation, chosen a lense that did not provide any close-up vision. Reading would never be comfortable, but I convinced myself to be grateful that I could do it all.www.kozzi.us.)
Combined with the dark-blind right eye, the loss of peripheral vision rendered me permanently legally blind. Nothing makes up for the loss, but with difficulty, I could function.
The retinapathy in the left eye darkened the vision to a circle, giving me tunnel vision.
Focusing also became a permanent problem. Changes in lighting required a long adjustment time, and angle of light could prove problematic. The artificial lense of the cataract surgery delayed distance refocusing. Change both distance and light at one, and I became pretty useless for a while.
I could drive without too much of a problem. The further away I focused, the wider the opening of the tunnel appeared. At that point, it became easier to drive to the supermarket than to walk around inside it. I could not see anyone who stepped beside me, so when I step to the side, I collide. Refocusing on reading labels to walking down the aisle requires time. I took to getting out of others’ way, letting crowds pass to avoid bumping into people and to maintain some buffer of personal space. The harder I tried to stay out of the way, the testier I got when other people keep getting in mine. That frustration has not eased with time.
At bowling I had to maintain focus on the pins. Checking the scoreboard displays triggered an extreme change in both light and distance that made my next frame suffer. I got in the habit of asking how the game was when each game finished. My bowling seemed to improve for the lack of self distraction.
I looked at the time since the hemorrhage as completely lost time. I worked as fast as I could on my fiction writing and on my other responsibilities. It did not take long to learn that "as fast as I could" fell short of my desires. I concentrated on short stories. Some of those written in 2010 have already seen publication. Publication can take a long time under the best circumstances, so I take great pride in how quickly "Advance Gratitude," "A Pediatrician in Wartime" and "The Thirteenth Day on Kurko" found homes in paper pages. (Shameless plug: those three and other anthologies can be found for purchase on my home site
The other consideration at that time remained medical treatment of the eye. With the eye already a mess, I knew I could not go without close monitoring. I did not wanted the situation to get worse....
Combined with the dark-blind right eye, the loss of peripheral vision rendered me permanently legally blind. Nothing makes up for the loss, but with difficulty, I could function.
The retinapathy in the left eye darkened the vision to a circle, giving me tunnel vision.
Focusing also became a permanent problem. Changes in lighting required a long adjustment time, and angle of light could prove problematic. The artificial lense of the cataract surgery delayed distance refocusing. Change both distance and light at one, and I became pretty useless for a while.
I could drive without too much of a problem. The further away I focused, the wider the opening of the tunnel appeared. At that point, it became easier to drive to the supermarket than to walk around inside it. I could not see anyone who stepped beside me, so when I step to the side, I collide. Refocusing on reading labels to walking down the aisle requires time. I took to getting out of others’ way, letting crowds pass to avoid bumping into people and to maintain some buffer of personal space. The harder I tried to stay out of the way, the testier I got when other people keep getting in mine. That frustration has not eased with time.
At bowling I had to maintain focus on the pins. Checking the scoreboard displays triggered an extreme change in both light and distance that made my next frame suffer. I got in the habit of asking how the game was when each game finished. My bowling seemed to improve for the lack of self distraction.
I looked at the time since the hemorrhage as completely lost time. I worked as fast as I could on my fiction writing and on my other responsibilities. It did not take long to learn that "as fast as I could" fell short of my desires. I concentrated on short stories. Some of those written in 2010 have already seen publication. Publication can take a long time under the best circumstances, so I take great pride in how quickly "Advance Gratitude," "A Pediatrician in Wartime" and "The Thirteenth Day on Kurko" found homes in paper pages. (Shameless plug: those three and other anthologies can be found for purchase on my home site
The other consideration at that time remained medical treatment of the eye. With the eye already a mess, I knew I could not go without close monitoring. I did not wanted the situation to get worse....
Thanksgiving
This is the appropriate day to specifically reflect on what I have to be thankful for.
That can be a tall order. Little more than two years ago, I was blind in one eye, but fully functional, self sufficient and independent.
I left the narrative in summer of 2010 when I was regaining some function. Things have gotten more complicated since then, and to spoil things towards "the ending" things have gotten worse even since I started this blog a little more than a month ago. The typing, proofreading and spellchecking are all more difficult now than those things were a month or so ago.
I am grateful that I still have some hope that some things can be done to make things better.
I am grateful that I have retained my sense of humor, and I give kudos again to the bowling partner whose surly humor directed at me helps ensure that I hold on to the ability to laugh at myself as well as others. Most of the real cutting edge humor is born of anger, and the situation has ensured that my lifelong comedic talents–which some people insist exist only in my own head–remain.
I appreciate the friend mentioned in an earlier post as having gotten into a fender bender in my vehicle while driving me for groceries. He in particular has been a rock for me through this. My appreciation is boundless.
I appreciate my roommate, someone who had remained in residence over the years mostly because I can cook and I had always been the rock he leaned on. We don’t always get along so smoothly. There’s aspects to the going blind decline that he just doesn’t get and psychologically can’t get. But he sees the worst of my bad moods and despair, and has done his best to adjust to the role reversal of my becoming the needy one.
I appreciate the bowling partners past and present who have provided transportation to get me there each week. I have been largely homebound aside this very odd activity for a blind guy. All of my teammates in all leagues over the past two years have been great in emphasizing that they didn’t care about scores or rankings that suffered for my disability. We’re all there to have a good time. One actually was not supportive and helpful, but he can be very hard to like anyway, so I appreciate that he chose not to bowl with me the following year;
I appreciate the tenants who have been patient and helpful as my capacity diminished. Those who refused to accommodate are gone now, and I appreciate that fact as well.
There’s countless other people who have provided rides or little favors, whether one-time or recurring. I have gotten very used to being the curmudgeon who goes it alone, so I am amazed and so very grateful that this hellish situation has shown me some very appealing sides to the people I have chosen to be around me in the days when I truly didn’t need anybody.
That can be a tall order. Little more than two years ago, I was blind in one eye, but fully functional, self sufficient and independent.
I left the narrative in summer of 2010 when I was regaining some function. Things have gotten more complicated since then, and to spoil things towards "the ending" things have gotten worse even since I started this blog a little more than a month ago. The typing, proofreading and spellchecking are all more difficult now than those things were a month or so ago.
I am grateful that I still have some hope that some things can be done to make things better.
I am grateful that I have retained my sense of humor, and I give kudos again to the bowling partner whose surly humor directed at me helps ensure that I hold on to the ability to laugh at myself as well as others. Most of the real cutting edge humor is born of anger, and the situation has ensured that my lifelong comedic talents–which some people insist exist only in my own head–remain.
I appreciate the friend mentioned in an earlier post as having gotten into a fender bender in my vehicle while driving me for groceries. He in particular has been a rock for me through this. My appreciation is boundless.
I appreciate my roommate, someone who had remained in residence over the years mostly because I can cook and I had always been the rock he leaned on. We don’t always get along so smoothly. There’s aspects to the going blind decline that he just doesn’t get and psychologically can’t get. But he sees the worst of my bad moods and despair, and has done his best to adjust to the role reversal of my becoming the needy one.
I appreciate the bowling partners past and present who have provided transportation to get me there each week. I have been largely homebound aside this very odd activity for a blind guy. All of my teammates in all leagues over the past two years have been great in emphasizing that they didn’t care about scores or rankings that suffered for my disability. We’re all there to have a good time. One actually was not supportive and helpful, but he can be very hard to like anyway, so I appreciate that he chose not to bowl with me the following year;
I appreciate the tenants who have been patient and helpful as my capacity diminished. Those who refused to accommodate are gone now, and I appreciate that fact as well.
There’s countless other people who have provided rides or little favors, whether one-time or recurring. I have gotten very used to being the curmudgeon who goes it alone, so I am amazed and so very grateful that this hellish situation has shown me some very appealing sides to the people I have chosen to be around me in the days when I truly didn’t need anybody.
Wednesday, November 23, 2011
Feedback 2
I have made some specific approaches to the blog.
I’m a guy, so I use the masculine pronoun. I was never that fond of the overly PC BS anyway. Womankind is part of mankind. Get over it.
I have also chosen to use the masculine pronoun in reference to all friends and acquaintances mentioned in this blog, no matter what circumstance I am discussing, whether kudos to someone who has been there or some ignoramus who got in my way.
Someone had said specifically not to name him on the internet. I’m not so sure I would have reason to anyway, but he got me thinking about people’s privacy. I don’t need to publicly call out or embarrass people even if they deserve it. I’m not afraid to, believe me. But I am better at holding my tongue than most people realize, if there is nothing to be gained from the ensuing argument. I’m not afraid to pick fights, but I am just smart enough to choose my battles.
To those who would want to be named for their good deeds, you have my advance apologies. If I tell people of intent to mention them, they might want an advance read, and I’m not going to open myself up to potential content editing on my own blog. Those who I appreciate know it, even if other shades of gray creep into relationships.
My regard for others’ privacy does not extend to doctors, you may have noticed. They work in the public and people should have as much input as possible when selecting people for their own care. I do strive for balance in my overall subjective experience, even if that is only really visible across several posts on a subject or event rather than in a single post. The search feature is enabled to find all posts that mention a specific doctor or term. The comments section for each post is also open. I may respond, but guarantee in advance I will only argue two cycles about a disagreement comment. I may also choose not to respond directly or do a "Feedback" post at a later time.
In a blog meant to be about my experiences as a diabetic and a blind guy, I think I have that right, just as you have the right to start your own blog.
But this is my party and I will decry if I want to.
I’m a guy, so I use the masculine pronoun. I was never that fond of the overly PC BS anyway. Womankind is part of mankind. Get over it.
I have also chosen to use the masculine pronoun in reference to all friends and acquaintances mentioned in this blog, no matter what circumstance I am discussing, whether kudos to someone who has been there or some ignoramus who got in my way.
Someone had said specifically not to name him on the internet. I’m not so sure I would have reason to anyway, but he got me thinking about people’s privacy. I don’t need to publicly call out or embarrass people even if they deserve it. I’m not afraid to, believe me. But I am better at holding my tongue than most people realize, if there is nothing to be gained from the ensuing argument. I’m not afraid to pick fights, but I am just smart enough to choose my battles.
To those who would want to be named for their good deeds, you have my advance apologies. If I tell people of intent to mention them, they might want an advance read, and I’m not going to open myself up to potential content editing on my own blog. Those who I appreciate know it, even if other shades of gray creep into relationships.
My regard for others’ privacy does not extend to doctors, you may have noticed. They work in the public and people should have as much input as possible when selecting people for their own care. I do strive for balance in my overall subjective experience, even if that is only really visible across several posts on a subject or event rather than in a single post. The search feature is enabled to find all posts that mention a specific doctor or term. The comments section for each post is also open. I may respond, but guarantee in advance I will only argue two cycles about a disagreement comment. I may also choose not to respond directly or do a "Feedback" post at a later time.
In a blog meant to be about my experiences as a diabetic and a blind guy, I think I have that right, just as you have the right to start your own blog.
But this is my party and I will decry if I want to.
Tuesday, November 22, 2011
Extra Effort
One of the neighbors I spoke of in the last post is also the one who came closest to actually offending me about my disability. He did this with a simple statement, "You’re not really blind" in reaction to some things I had generated on the computer.
I specifically chose not to be offended. Instead I took it as a compliment on the quality of work I had produced. I pretty much also figure he feels some shame for not being able to do something relatively basic as well as a blind guy can do it.
I have no history of feigning illness to get out of work or escape responsibilities. My attendance record on jobs and other commitments is well above average. If I had a history of slacking, maybe his ignorant comment would be warranted.
Instead, I have overcompensated for my new and increasing disability. Whenever possible, I walk without direct assistance. I do not use a cane for a few reasons. First, I think it is labeling myself in a way that will corrode my self concept. It labels me as blind to others, and in this economy of robberies and other desperate crimes, the cane amounts to a target sign. I would hate to embarrass such ne’er-do-wells by having them get a public beat down by a scrawny blind guy. And my original joke-line excuse remains: if I expend effort to stay out of others’ way and then they get in my way anyway, I will get frustrated enough to beat them with the cane.
I do make genuine effort to let anyone else get around me first. Shopping takes much longer because of this. I shouldn’t have to carry a cane to make other people more aware of or more comfortable with my disability.
Fat people seem to be most offended by this. I assume they are most used to being seen under any circumstances. I see mostly by motion and contrast. If fat folks’ stretchy clothes are colors that blend into the background of the environment and they’re moving slowly as fat people typically do, it’s easy to miss them.
I have spent the last two years pretending to be more capable than I am, trying to remain a whole person. It takes a lot of effort and determination, sometimes more than it seems worth. My roommate has pointed out that I am becoming less able to pretend. In group situations when those around me change or someone walking by says hello, I am being more open about not usually knowing to whom I am talking to.
I figure if someone doesn’t understand that, he’s probably not worth talking to anyway.
I specifically chose not to be offended. Instead I took it as a compliment on the quality of work I had produced. I pretty much also figure he feels some shame for not being able to do something relatively basic as well as a blind guy can do it.
I have no history of feigning illness to get out of work or escape responsibilities. My attendance record on jobs and other commitments is well above average. If I had a history of slacking, maybe his ignorant comment would be warranted.
Instead, I have overcompensated for my new and increasing disability. Whenever possible, I walk without direct assistance. I do not use a cane for a few reasons. First, I think it is labeling myself in a way that will corrode my self concept. It labels me as blind to others, and in this economy of robberies and other desperate crimes, the cane amounts to a target sign. I would hate to embarrass such ne’er-do-wells by having them get a public beat down by a scrawny blind guy. And my original joke-line excuse remains: if I expend effort to stay out of others’ way and then they get in my way anyway, I will get frustrated enough to beat them with the cane.
I do make genuine effort to let anyone else get around me first. Shopping takes much longer because of this. I shouldn’t have to carry a cane to make other people more aware of or more comfortable with my disability.
Fat people seem to be most offended by this. I assume they are most used to being seen under any circumstances. I see mostly by motion and contrast. If fat folks’ stretchy clothes are colors that blend into the background of the environment and they’re moving slowly as fat people typically do, it’s easy to miss them.
I have spent the last two years pretending to be more capable than I am, trying to remain a whole person. It takes a lot of effort and determination, sometimes more than it seems worth. My roommate has pointed out that I am becoming less able to pretend. In group situations when those around me change or someone walking by says hello, I am being more open about not usually knowing to whom I am talking to.
I figure if someone doesn’t understand that, he’s probably not worth talking to anyway.
Sunday, November 20, 2011
Good Neighbors
The best approach to most patients losing their eyesight is a nonchalant "If you need help with that, just let me know." The patient will know he has help if needed, but feels free to try on his own.
One key to this is to make your offer sincere. If you don’t want to help, keep your mouth shut and don’t make any offers. Just stick to "I’m so sorry to see what happened. Sorry you can’t."
OK, leave off the last part. Not many people share my sense of humor.
One of the worst things is to think you’re being polite and charitable as a means of showing support, then huffing or rolling your eyes if the blind guy ever has the bad manners to take you up on your offer. One neighbor told me to let him know if I ever needed a ride from a recurring local event. I gave sincere thanks and remembered the offer. When I did ask one night, he spent more time asking around for someone willing to drive me the six blocks than it would have taken him to give the ride that had been offered. Any number of excuses may be possible or legitimate, but none could diminish how I felt when I heard him start peddling me off.
Another neighbor, this one more typically ignorant to begin with, pulled over in traffic when he saw me walking the opposite way on a cold and rainy day in April 2010. He talked to me for four minutes or so. When I asked for a ride to my destination three blocks away, he told me he couldn’t because he was heading in the opposite direction.
Newsflash, neighbor: you’re nowhere near interesting enough to talk to that I feel honored that you took time out of your day to partially pull over to say hello and tell me about your life while you obstructed traffic on a city thruway and I got wetter and colder than I would have if I had just waved and continued walking.
I would have even used all five fingers in that wave, which is something I can no longer guarantee you.
One key to this is to make your offer sincere. If you don’t want to help, keep your mouth shut and don’t make any offers. Just stick to "I’m so sorry to see what happened. Sorry you can’t."
OK, leave off the last part. Not many people share my sense of humor.
One of the worst things is to think you’re being polite and charitable as a means of showing support, then huffing or rolling your eyes if the blind guy ever has the bad manners to take you up on your offer. One neighbor told me to let him know if I ever needed a ride from a recurring local event. I gave sincere thanks and remembered the offer. When I did ask one night, he spent more time asking around for someone willing to drive me the six blocks than it would have taken him to give the ride that had been offered. Any number of excuses may be possible or legitimate, but none could diminish how I felt when I heard him start peddling me off.
Another neighbor, this one more typically ignorant to begin with, pulled over in traffic when he saw me walking the opposite way on a cold and rainy day in April 2010. He talked to me for four minutes or so. When I asked for a ride to my destination three blocks away, he told me he couldn’t because he was heading in the opposite direction.
Newsflash, neighbor: you’re nowhere near interesting enough to talk to that I feel honored that you took time out of your day to partially pull over to say hello and tell me about your life while you obstructed traffic on a city thruway and I got wetter and colder than I would have if I had just waved and continued walking.
I would have even used all five fingers in that wave, which is something I can no longer guarantee you.
Saturday, November 19, 2011
The Right Approach
Worse than being blind is the process of going blind. The blind guy is constantly having to adjust to and accept new, ever-increasing limitations.
Yes, the patient may be resistant to losing yet another element of self sufficiency. There’s a whirlwind of negativity that the patient feels. Self worth and capability decline with sight.
Getting mad at the stubborn blind fool will only escalate the downward spiral.
Ripping a childproof line-up-the-arrows aspirin bottle from the blind guy’s hand will not alleviate his headache. One of my bowling partners deals with me with abrasive humor, something I deal with especially well but may not work so well with other people. After the first time of trying to snatch the bottle away, he employed humor to much better result.
"I’m timing you, and this is getting boring...still timing you...still timing you...still timing you...."
"Taking bets! Fifty says the bottle wins over the blind guy!"
"You’re getting frustrated with that and I’m getting frustrated watching you. Can I help?"
"I’m recording this with my phone, so unless you want your ten minute fight with that all over U-tube, let me help."
Somehow
Those small but growing inabilities add up. The list of things I can do with my remaining vision seems to get shorter every day. Something as simple as opening an aspirin bottle can be a major headache.
Snatching things out of blind hands or just taking over something are not approaches that work without further eroding the patent’s confidence.
My teammate’s approach wouldn’t work on everyone. The lack of malice in the "mean" humor and the sincere offer of help carried it for ne, even while that teammate’s general attitude that developed over years of friendship caused a newer teammate to quit the team.
The best approach to most patients is a nonchalant "If you need help with that, just let me know." The patient will know he has help if needed, but feels free to try on his own., he trained me to just hand over the bottle when I need to open it. Admittedly, that is a lot easier than trying to gnaw open the bottle. This approach appealed to me not just because I have a similar rough sense of humor, but because fewer people interact with me as a whole person. Sometimes I become a project, other times a magnet for quiet unease because people don’t know what to say to a blind guy.
Yes, the patient may be resistant to losing yet another element of self sufficiency. There’s a whirlwind of negativity that the patient feels. Self worth and capability decline with sight.
Getting mad at the stubborn blind fool will only escalate the downward spiral.
Ripping a childproof line-up-the-arrows aspirin bottle from the blind guy’s hand will not alleviate his headache. One of my bowling partners deals with me with abrasive humor, something I deal with especially well but may not work so well with other people. After the first time of trying to snatch the bottle away, he employed humor to much better result.
"I’m timing you, and this is getting boring...still timing you...still timing you...still timing you...."
"Taking bets! Fifty says the bottle wins over the blind guy!"
"You’re getting frustrated with that and I’m getting frustrated watching you. Can I help?"
"I’m recording this with my phone, so unless you want your ten minute fight with that all over U-tube, let me help."
Somehow
Those small but growing inabilities add up. The list of things I can do with my remaining vision seems to get shorter every day. Something as simple as opening an aspirin bottle can be a major headache.
Snatching things out of blind hands or just taking over something are not approaches that work without further eroding the patent’s confidence.
My teammate’s approach wouldn’t work on everyone. The lack of malice in the "mean" humor and the sincere offer of help carried it for ne, even while that teammate’s general attitude that developed over years of friendship caused a newer teammate to quit the team.
The best approach to most patients is a nonchalant "If you need help with that, just let me know." The patient will know he has help if needed, but feels free to try on his own., he trained me to just hand over the bottle when I need to open it. Admittedly, that is a lot easier than trying to gnaw open the bottle. This approach appealed to me not just because I have a similar rough sense of humor, but because fewer people interact with me as a whole person. Sometimes I become a project, other times a magnet for quiet unease because people don’t know what to say to a blind guy.
Friday, November 18, 2011
Frrustration
My roommate and a couple friends had seen my outright flares of temper from the October 2009 Cialis-induced vitreous hemorrhage through Spring 2010 when I healed enough to be somewhat functional. In general I maintained composure and superficial acceptance of the new status quo. Many people from friends to acquaintances to doctors were amazed at how well I dealt with it all.
I wish I could say I was a calm, even tempered guy. I’m not. The funky thing is my temper triggers differently than other people’s.
For so long I have wound myself pretty tightly against the fits of bad temper that get triggered by frustrations during periods of low blood sugar. I have developed into someone who handles the big things well. But frustration is my enemy.
The friend who drove me around most during the red blackout period is still amazed at my utter lack of reaction to the car accident with my own vehicle during one of our trips to the grocery store. As a blind passenger in his own vehicle during the accident, I felt no anger during or since. It was an accident. That same friend watched me hurl my cell phone through tempered glass because I was too blind to dial and the voice recognition kept interpreting everything I said as instruction to call a hated tenant. This was a good enough friend ro clean up the broken glass before the blind guy could cut himself on it. Everyone should be so lucky to have such friends.
At bowling, I can get frustrated by bad scores but manage to step back from that without cursing loudly or kicking the ball return. That self control is much harder when the blood sugar is at a relative low. It’s only a game.
Yet someone who, after asked nicely, continues to use powder on his shoes. This is illegal in the sport as it poses slipping hazards to others. The blind guy who relies on the bowling alley as one of the few places he can be sure-footed does not deal with new slipping hazards well. The willful ignorance triggered the blind guy to taking the bottle of baby powder and tossing it into the trash in front of the offending bowler. And when that blind guy is verbally attacked for being so rude by someone who prefers polite self-centered ignorance, this blind guy doesn’t back down.
Blindness is an endless exercise in frustration. I still do a lot with what little sight I have left, but everything takes longer. Everything involves extra steps and increased caution. Some things just aren’t possible, but I learn that only after frustrating myself.
Maybe dealing with blindness is easier for people who were born that way because they don’t know what they’re missing. Or maybe that presumption is sheer ignorance.
I’ve worked hard through life for self sufficiency. The constantly increasing reliance on others is a frustration all to itself.
Getting mad at the stubborn blind fool will only escalate the downward spiral.
Thursday, November 17, 2011
For Better and for Worse
I dud not return to the Koch Eye Associates offices after the exam that followed the PRP session on 2 February 2010.
I felt like income rather than a patient. I received no answer to my questions about the onset of retinapathy during a series of procedures meant to prevent retinapathy. I had not been told that both the PRP procedures and the cataract operation posed risks to retinapathy development. I could not ignore that the retinapathy advanced and the "trusted" doctors who increased my risk factors had neither warned me about those risks or did anything to actually help.
From February to June 2010, things got better and worse. I was in denial that I was permanently legally blind. By April, I was trying to work again, with very limited success and a few glaring failures.
I think it is important that I kept trying. I’m a fighter and was unwilling to surrender.
The cloud of blood left behind from the vitreous hemorrhage of the previous October did slowly diminish in this time. The more active I became, the faster it seemed to heal. I resumed sleeping in bed rather than the recliner. Things were fuzzier when I woke due to a different angle of separation between blood and vitreous gel, but the obstruction reduced. I got to my optometrist–an eye doctor I could trust, Hendrick Krosschell in Attleboro Massachusetts–and did get reading glasses that worked for a time.
Unfortunately, as the vitreous gel healed, the retinapathy worsened. Flashers and wavy floors became routine plagues. My central vision in the one good eye cleared, but the overall vision reduced to just that central vision. I could see what I was looking at, but only what I was directly looking at. The peripheral had darkened and closed in to the borders of the cataract.
I could drive, with limitations. I really had to know where I was going because I couldn’t be extending my vision to check the surroundings and focus on the road. Because the cone of vision was wider at distances, it was actually easier to drive to the grocery store than to navigate among bustling people inside.
I clung to gratitude of what I did have instead of focusing on what I didn’t.
Despite the public demeanor, inside I seethed. I still seethe over the situation. Maybe this is some hindsight tunnel vision, but this was done to me. With more complete information, I would have made different decisions. I seethe even more because it continues to get worse.
I felt like income rather than a patient. I received no answer to my questions about the onset of retinapathy during a series of procedures meant to prevent retinapathy. I had not been told that both the PRP procedures and the cataract operation posed risks to retinapathy development. I could not ignore that the retinapathy advanced and the "trusted" doctors who increased my risk factors had neither warned me about those risks or did anything to actually help.
From February to June 2010, things got better and worse. I was in denial that I was permanently legally blind. By April, I was trying to work again, with very limited success and a few glaring failures.
I think it is important that I kept trying. I’m a fighter and was unwilling to surrender.
The cloud of blood left behind from the vitreous hemorrhage of the previous October did slowly diminish in this time. The more active I became, the faster it seemed to heal. I resumed sleeping in bed rather than the recliner. Things were fuzzier when I woke due to a different angle of separation between blood and vitreous gel, but the obstruction reduced. I got to my optometrist–an eye doctor I could trust, Hendrick Krosschell in Attleboro Massachusetts–and did get reading glasses that worked for a time.
Unfortunately, as the vitreous gel healed, the retinapathy worsened. Flashers and wavy floors became routine plagues. My central vision in the one good eye cleared, but the overall vision reduced to just that central vision. I could see what I was looking at, but only what I was directly looking at. The peripheral had darkened and closed in to the borders of the cataract.
I could drive, with limitations. I really had to know where I was going because I couldn’t be extending my vision to check the surroundings and focus on the road. Because the cone of vision was wider at distances, it was actually easier to drive to the grocery store than to navigate among bustling people inside.
I clung to gratitude of what I did have instead of focusing on what I didn’t.
Despite the public demeanor, inside I seethed. I still seethe over the situation. Maybe this is some hindsight tunnel vision, but this was done to me. With more complete information, I would have made different decisions. I seethe even more because it continues to get worse.
Warning Signs
I lost vision in my right eye when the eye was looking around a temporary obstruction caused by a cornea abrasion. The eye muscles pulled at the back of the eye and against the retina. Slow blood leaks started at that time and progressed quickly. Dr Lowenstein’s statement "You never had an eye injury" displayed the doctor’s evident belief that a sudden change from nonproliferative to proliferative stages of diabetic retinapathy only happens in a vacuum to naughty diabetics. I know his diagnosis was wrong. The sudden change from bad but stable and non-problematic to actively bleeding stages only happened in one eye.
Despite his scoffing at the reported cause, Lowenstein found my left eye stable and did not recommend immediate PRP surgery in the years I saw him.
My next doctor, Harold Woodcomb, also determined the left eye to be surprisingly stable.
If I had been better educated about the warning signs and symptoms, I would have sought help for the right eye sooner. Some level of useful vision might have been saved. I didn’t notice the signs soon enough because my whole field of vision in that eye was moving. I was seeing double. The right eye saw images above and to the left off the left eye’s image. I had incorrectly assumed that the flashing and swirling effects were part of the muscle movement.
The dark eye does retain excellent color vision through the remaining pinhole. I noticed this when further complications on the good eye diminished my color vision.
That earlier loss had taught me retinapathy’s signs and symptoms. I have blamed no one but myself for the incident from start to finish.
Diabetics need to be aware of:
I judge from the fact that in a 15+ year period, three doctors told me I would be blind in six months but not one of them told me what signs of active problems to look for. Educated patients are less profitable patients.
I had none of those symptoms when I began the PRP treatment. My eye had not leaked from the Cialis, it had gushed, creating not little black flecks but an enormous red wave;.
What I cannot recommend is that any patient simply take the word of his doctor that he needs PRP right away, if the patient has no actual visual signs of a problem. Study the risks and side effects of the surgery, here or on independent internet searches. The treatment can cause the precise problems it is supposed to prevent.
Despite his scoffing at the reported cause, Lowenstein found my left eye stable and did not recommend immediate PRP surgery in the years I saw him.
My next doctor, Harold Woodcomb, also determined the left eye to be surprisingly stable.
If I had been better educated about the warning signs and symptoms, I would have sought help for the right eye sooner. Some level of useful vision might have been saved. I didn’t notice the signs soon enough because my whole field of vision in that eye was moving. I was seeing double. The right eye saw images above and to the left off the left eye’s image. I had incorrectly assumed that the flashing and swirling effects were part of the muscle movement.
The dark eye does retain excellent color vision through the remaining pinhole. I noticed this when further complications on the good eye diminished my color vision.
That earlier loss had taught me retinapathy’s signs and symptoms. I have blamed no one but myself for the incident from start to finish.
Diabetics need to be aware of:
- distortions at the edges, such as when a tile floor seems wavy;
- flashing light spheres or crescents that circle or flow around the eye whether the eye is open or closed;
- gradual darkening at the edges of vision;
- small recurring floaters, which are dark spots or stringy clouds loose in the eye.
I judge from the fact that in a 15+ year period, three doctors told me I would be blind in six months but not one of them told me what signs of active problems to look for. Educated patients are less profitable patients.
I had none of those symptoms when I began the PRP treatment. My eye had not leaked from the Cialis, it had gushed, creating not little black flecks but an enormous red wave;.
What I cannot recommend is that any patient simply take the word of his doctor that he needs PRP right away, if the patient has no actual visual signs of a problem. Study the risks and side effects of the surgery, here or on independent internet searches. The treatment can cause the precise problems it is supposed to prevent.
Tuesday, November 15, 2011
What PRP taught me
The flashers started after the third PRP session. I told Dr Michael O’Brien about them and got no response, no reassurance, and he went ahead and did three more sessions. By the end of the sixth session, I suspected that my periphery was closing in. Both these symptoms indicate retinapathy that the PRP treatment was supposed to prevent. Both are also well documented side effects of PRP treatment.
So what is the point of calling the doctor right away, as instructed? It had always been my intent to do PRP when I perceived retinapathy problems, not when some doctor told me I had problems. The hemorrhage changed that and I let myself get scared into it on the chance that I was wrong about the hemorrhage being caused by the Cialis. I’d been warned and threatened and scared about retinapathy so many times that filtering the legitimacy from the profiteering scare tactics could not be done.
I was pretty sure I was right about the hemorrhage, but I am not arrogant enough to refuse to entertain the possibility that I was wrong.
While O’Brien showed no God Complex–probably because Dr. Michel Negrey’s God Complex left no room in the Koch offices for anyone else to compete–I do, however, think O’Brien and other doctors need to think more about performing PRP procedures before doing them. Doctors need a little less confidence in their own certainty. They need to listen to their patients more and listen to the drug reps and medical equipment salesmen less.
I had been told three times over fifteen years that I would be blind in six months without PRP surgery. Not one of those three different doctors mentioned the risk of causing the precise thing that their profitable procedure should prevent.
None
All three
Doctor Michael O’Brien, who finally did the procedure, had not needed scare tactics. The blood from the Cialis-induced hemorrhage had me scared enough. O’Brien only needed to exploit minor reasonable doubt about the cause of the blood.
O’Brien and the others are still making money shooting lasers into other people’s eyes while I descend ever more rapidly into darkness that leaves me without means to earn funding for the next medical bill.
This is America. Medical treatment is a for-profit business.
Buyer beware.
I do not mean to discourage anyone who needs the treatment.
I do mean to have the information out there for the people who don’t need it, for people who might be easily scared by the threat of blindness in six months.
The patient should be the primary decider, and he needs to be honest with himself. If he is not seeing the signs himself, he should have his eyes checked no less than every six. The first time he notices wavy lines or loss at the peripheral or dancing lights in his eyes, he has nothing to lose from the procedure that could possibly salvage his vision before further loss. were far more concerned in scaring me into a procedure for a hefty fee.educated me on warning signs to watch out for.
So what is the point of calling the doctor right away, as instructed? It had always been my intent to do PRP when I perceived retinapathy problems, not when some doctor told me I had problems. The hemorrhage changed that and I let myself get scared into it on the chance that I was wrong about the hemorrhage being caused by the Cialis. I’d been warned and threatened and scared about retinapathy so many times that filtering the legitimacy from the profiteering scare tactics could not be done.
I was pretty sure I was right about the hemorrhage, but I am not arrogant enough to refuse to entertain the possibility that I was wrong.
While O’Brien showed no God Complex–probably because Dr. Michel Negrey’s God Complex left no room in the Koch offices for anyone else to compete–I do, however, think O’Brien and other doctors need to think more about performing PRP procedures before doing them. Doctors need a little less confidence in their own certainty. They need to listen to their patients more and listen to the drug reps and medical equipment salesmen less.
I had been told three times over fifteen years that I would be blind in six months without PRP surgery. Not one of those three different doctors mentioned the risk of causing the precise thing that their profitable procedure should prevent.
None
All three
Doctor Michael O’Brien, who finally did the procedure, had not needed scare tactics. The blood from the Cialis-induced hemorrhage had me scared enough. O’Brien only needed to exploit minor reasonable doubt about the cause of the blood.
O’Brien and the others are still making money shooting lasers into other people’s eyes while I descend ever more rapidly into darkness that leaves me without means to earn funding for the next medical bill.
This is America. Medical treatment is a for-profit business.
Buyer beware.
I do not mean to discourage anyone who needs the treatment.
I do mean to have the information out there for the people who don’t need it, for people who might be easily scared by the threat of blindness in six months.
The patient should be the primary decider, and he needs to be honest with himself. If he is not seeing the signs himself, he should have his eyes checked no less than every six. The first time he notices wavy lines or loss at the peripheral or dancing lights in his eyes, he has nothing to lose from the procedure that could possibly salvage his vision before further loss. were far more concerned in scaring me into a procedure for a hefty fee.educated me on warning signs to watch out for.
Monday, November 14, 2011
Global Coverage
The first PRP session occurred on 2 November, 2009. I paid out of pocket for what was termed by Koch Eye Associates and their affiliate St. James Medical center as "global coverage" for ninety days. Aspects of that tern proved deceptive, if not outright lies.
"Global coverage" simply meant that they would shoot the laser into the eye an "unlimited number of times in that 90-day period.
Doctor Michael O’Brien performed the laser procedures and the exams in between procedures. The cataract surgery was performed by a different doctor with Koch but also at St. James. Understandably, thr cataract was not part of the "global coverage" and I did not expect it to be.
The exams given by Doctor O’Brien in his Koch Eye office were also not included in the "global coverage." Ultrasounds of the eye billed separate charges. Photography of the eye also raised the bill. Doctor O’Brien also set the dates for exams and PRP procedures alike. I was blind, physically and emotionally crippled. I went along with doctor’s orders like a good little patient.
Two lasers in two weeks, then an exam more than a week later. Laser Thanksgiving week, an exam the following week, more laser the week after that, bringing us to 7 December. 2009 rounded out with an exam on the 18th and laser on the 21st. By the doctor’s scheduling, the following exam delayed until the 4th of January. At that time, the Koch offices scheduled the cataract procedure for 24 January and the next laser for 2 February.
After the cataract procedure and exams, the Koch offices called. They had just wanted to give me a friendly reminder that since the scheduled appointment for the next PRP was outside the 90-day "global coverage" that payment for the next 90-day period would be due before the procedure. In their kindness, they would only charge me half.
2 February is more than 90 days past 2 November as both January and December have 31 days.
I pointed out that the doctor did all the scheduling, that I had another procedure done by them and that three major holidays that are two-day events for most people and two legal holidays had fallen in between the dates separated by 92 days.
They got back to me later that afternoon, claiming to have spoken with Doctor Koch himself. In the ultimate kindness they would include the 2 February procedure but that any extension of the global coverage would have to be at full price.
That Monday, when I sat down at "the rack" in front of Doctor O’Brien, I told him to make sure he got everything, because I could not afford any extension.
Neither at that time nor in that final subsequent exam did he indicate more was necessary.
Nor dud he offer any explanation as to why the flashers that had begun after the third session had never abated, or confirm my suspicion that the edges of my vision were darkening.
"Global coverage" simply meant that they would shoot the laser into the eye an "unlimited number of times in that 90-day period.
Doctor Michael O’Brien performed the laser procedures and the exams in between procedures. The cataract surgery was performed by a different doctor with Koch but also at St. James. Understandably, thr cataract was not part of the "global coverage" and I did not expect it to be.
The exams given by Doctor O’Brien in his Koch Eye office were also not included in the "global coverage." Ultrasounds of the eye billed separate charges. Photography of the eye also raised the bill. Doctor O’Brien also set the dates for exams and PRP procedures alike. I was blind, physically and emotionally crippled. I went along with doctor’s orders like a good little patient.
Two lasers in two weeks, then an exam more than a week later. Laser Thanksgiving week, an exam the following week, more laser the week after that, bringing us to 7 December. 2009 rounded out with an exam on the 18th and laser on the 21st. By the doctor’s scheduling, the following exam delayed until the 4th of January. At that time, the Koch offices scheduled the cataract procedure for 24 January and the next laser for 2 February.
After the cataract procedure and exams, the Koch offices called. They had just wanted to give me a friendly reminder that since the scheduled appointment for the next PRP was outside the 90-day "global coverage" that payment for the next 90-day period would be due before the procedure. In their kindness, they would only charge me half.
2 February is more than 90 days past 2 November as both January and December have 31 days.
I pointed out that the doctor did all the scheduling, that I had another procedure done by them and that three major holidays that are two-day events for most people and two legal holidays had fallen in between the dates separated by 92 days.
They got back to me later that afternoon, claiming to have spoken with Doctor Koch himself. In the ultimate kindness they would include the 2 February procedure but that any extension of the global coverage would have to be at full price.
That Monday, when I sat down at "the rack" in front of Doctor O’Brien, I told him to make sure he got everything, because I could not afford any extension.
Neither at that time nor in that final subsequent exam did he indicate more was necessary.
Nor dud he offer any explanation as to why the flashers that had begun after the third session had never abated, or confirm my suspicion that the edges of my vision were darkening.
Sunday, November 13, 2011
Changed but no Different
By the end of January 2010, everything had changed, but nothing was really better.
After the third of five sessions of PRP laser treatment, I had flashers in the left eye, a sure sign of advanced eye problems from diabetes, the precise thing the PRP was supposed to have prevented.
Cataract surgery had cleared the ruddy fog from my outer eye, but had done nothing for the pool of blood that welled in my inner eye. Prior to the cataract surgery, I had not been aware of two separate pools of blood.
The cataract surgery had to be done, and going on two years later I still have no doubts about that. I wish I had been told about the potential risks and been given realistic expectations for my vision afterwards, but I would have gone ahead with the cataract procedure.
My vision at that point was frustrating for its inconsistency. I had been sleeping in a recliner because independent internet searches on the problem of the vitreous hemorrhage suggested not sleeping lying down. When I woke, my vision was clearer than it had been since earliest childhood. As I slept or was fully still, the blood in the center of my eye would settle and separate from the vitreous gel, the way oil and vinegar separate in an untouched carafe. Unfortunately, even minor motion mixed the fluids back up and took away hat clarity. A fifty foot walk from the living room to the bathroom proved enough to remix the fluids and reduce the eyesight.
I could not read. Glasses might improve the severe far sightedness that the cataract lense had caused, but I was not able to actually get to my optometrist with clear enough vision to test for the appropriate lense.
Most of the minor jobs I tried doing came out pretty badly. Other than sitting like a lump, the only thing I continued to do was bowl in my two leagues. Most of the teammates I had at the time were fully supportive. I’d throw the first ball straight and try to center to the marks. For spare shots, my teammates would tell me which pins still stood. My average had never been too high and I only lost some ten percent off of it. The major accomplishment was a perfectly straight throw that pickled up a 6-7-10 split.
Otherwise, I stagnated at home, wishing I could be working, wishing I could be reading the books whose spines I could for the first time in my life read from across the room. TV bored me and I was running out of public libraries’ audio books that I had real interest in "reading."
I had one more PRP session scheduled. I had promises from internet research–not from doctors–that the blood in the center of the eye would dissipate over time.
I still had hope.
After the third of five sessions of PRP laser treatment, I had flashers in the left eye, a sure sign of advanced eye problems from diabetes, the precise thing the PRP was supposed to have prevented.
Cataract surgery had cleared the ruddy fog from my outer eye, but had done nothing for the pool of blood that welled in my inner eye. Prior to the cataract surgery, I had not been aware of two separate pools of blood.
The cataract surgery had to be done, and going on two years later I still have no doubts about that. I wish I had been told about the potential risks and been given realistic expectations for my vision afterwards, but I would have gone ahead with the cataract procedure.
My vision at that point was frustrating for its inconsistency. I had been sleeping in a recliner because independent internet searches on the problem of the vitreous hemorrhage suggested not sleeping lying down. When I woke, my vision was clearer than it had been since earliest childhood. As I slept or was fully still, the blood in the center of my eye would settle and separate from the vitreous gel, the way oil and vinegar separate in an untouched carafe. Unfortunately, even minor motion mixed the fluids back up and took away hat clarity. A fifty foot walk from the living room to the bathroom proved enough to remix the fluids and reduce the eyesight.
I could not read. Glasses might improve the severe far sightedness that the cataract lense had caused, but I was not able to actually get to my optometrist with clear enough vision to test for the appropriate lense.
Most of the minor jobs I tried doing came out pretty badly. Other than sitting like a lump, the only thing I continued to do was bowl in my two leagues. Most of the teammates I had at the time were fully supportive. I’d throw the first ball straight and try to center to the marks. For spare shots, my teammates would tell me which pins still stood. My average had never been too high and I only lost some ten percent off of it. The major accomplishment was a perfectly straight throw that pickled up a 6-7-10 split.
Otherwise, I stagnated at home, wishing I could be working, wishing I could be reading the books whose spines I could for the first time in my life read from across the room. TV bored me and I was running out of public libraries’ audio books that I had real interest in "reading."
I had one more PRP session scheduled. I had promises from internet research–not from doctors–that the blood in the center of the eye would dissipate over time.
I still had hope.
Saturday, November 12, 2011
Cataract Surprises, Part 2
By all reckoning, Dr. Michael Negrey of Koch Eye Associates has superb technical skill. His problem is arrogance that manifests as God Complex
"Doctor God" failed to tell me vital things about the cataract surgery in January 2010.
Doctor God had not told me that cataract surgery poses risk of diabetic retinapathy, or that the blood spilled by the Cialis-induced hemorrhage had filled the center of the eye in addition to the cataract.
Doctor God did not tell me that I had a choice in cataract lenses that could be put in my eye to replace the lense that would be surgically removed. Instead, Doctor God chose for me. Four doctors later I heard an explanation. Doctor God had put in the lense that best let doctors examine my eye, rather than the best lense for me to see out of.
The new lense provided great distance vision. I was not used to that. What had been distant fuzzy lights of houses through the tree out my bedroom window now became entire houses.
The new lense destroyed my close up vision. Even at 40 I had needed no correction for reading. Post hemorrhage, I could not read for the ruddy cloud. Now I could not read because the inflexible artificial lense did not allow focus at close distances.
I am a writer. I had been an avid reader. I have a bookcase full of volumes I just had not gotten to yet, that I now probably will never get to.
I had not been able to read the anthology that included my first publication in book form when it premiered a few weeks after the hemorrhage. Now, I could not read it because the cloud was not gone as expected, and my eyes were unable to focus at short range. That bookcase of esoteric science fiction novels that will probably never see audio format remained out of reach even as I was mostly homebound and bored. The lifelong collection of comics were rendered worthlessly unreadable.
The blood cloud in the center of the eye behaved differently that when a second obstruction had existed in the cataract. The obstruction in the cataract had always been there. The blood within the vitreous gel mixed with the eye’s natural fluids. When I remained perfectly at rest for prolonged periods, the blood and the vitreous gel would separate like oil and water. I had perfect clarity when I woke. Unfortunately, any motion mixed the fluids back together, rendering me blind again. A walk some fifty feet and back from the recliner to the bathroom mixed the blood enough to blind.
I questioned Doctor God about these things on the first follow up to the cataract procedure. God doesn’t like being questioned. I didn’t get any answers, and my second appointment had been chanced to a different doctor.
In theory, the eye should clear up over time. Once it cleared up enough for me to be able to get to Dr. Krosschell’s office with clear vision, glasses might restore the close range vision.
I clung to that hope.
"Doctor God" failed to tell me vital things about the cataract surgery in January 2010.
Doctor God had not told me that cataract surgery poses risk of diabetic retinapathy, or that the blood spilled by the Cialis-induced hemorrhage had filled the center of the eye in addition to the cataract.
Doctor God did not tell me that I had a choice in cataract lenses that could be put in my eye to replace the lense that would be surgically removed. Instead, Doctor God chose for me. Four doctors later I heard an explanation. Doctor God had put in the lense that best let doctors examine my eye, rather than the best lense for me to see out of.
The new lense provided great distance vision. I was not used to that. What had been distant fuzzy lights of houses through the tree out my bedroom window now became entire houses.
The new lense destroyed my close up vision. Even at 40 I had needed no correction for reading. Post hemorrhage, I could not read for the ruddy cloud. Now I could not read because the inflexible artificial lense did not allow focus at close distances.
I am a writer. I had been an avid reader. I have a bookcase full of volumes I just had not gotten to yet, that I now probably will never get to.
I had not been able to read the anthology that included my first publication in book form when it premiered a few weeks after the hemorrhage. Now, I could not read it because the cloud was not gone as expected, and my eyes were unable to focus at short range. That bookcase of esoteric science fiction novels that will probably never see audio format remained out of reach even as I was mostly homebound and bored. The lifelong collection of comics were rendered worthlessly unreadable.
The blood cloud in the center of the eye behaved differently that when a second obstruction had existed in the cataract. The obstruction in the cataract had always been there. The blood within the vitreous gel mixed with the eye’s natural fluids. When I remained perfectly at rest for prolonged periods, the blood and the vitreous gel would separate like oil and water. I had perfect clarity when I woke. Unfortunately, any motion mixed the fluids back together, rendering me blind again. A walk some fifty feet and back from the recliner to the bathroom mixed the blood enough to blind.
I questioned Doctor God about these things on the first follow up to the cataract procedure. God doesn’t like being questioned. I didn’t get any answers, and my second appointment had been chanced to a different doctor.
In theory, the eye should clear up over time. Once it cleared up enough for me to be able to get to Dr. Krosschell’s office with clear vision, glasses might restore the close range vision.
I clung to that hope.
Friday, November 11, 2011
Cataract Surprises, Part 1
I’ll start this one with a good thing to say so I don’t come across bitter or unbalanced, too much.
Other doctors, not associated with Koch Eye Associates, have asked me who did the cataract surgery because they were greatly impressed with the technical expertise on the job.
From my first visit to Doctor Michael Negrey, I had mixed feelings. His bedside manner sucked. He wanted to tell and talk and had no patience for patient questions. He had, in that visit, noted something that could be critical, a potential thyroid problem. I paid for the MRI that proved no thyroid concern out of pocket, but I was happy to have a potential problem diagnosed and eliminated. It all goes to informed consent about my own medical care, and I do not begrudge mere money when I am, getting some kind of bang for my buck.
Informed consent is exactly what Dr. Negrey a.k.a. Doctor God, denied me in most every other way.
As I judge by his demeanor, Negrey is God. He is an angry and envious God whose divine judgment is not to be questioned. His patients should bow to him and make sacrifice and worship his power of light and dark.
Doctor God did not tell me the extent of the blood in my eye. He told me that removing the cataract would remove the blood that had filled the cataract and would restore my distance vision like new. Those things were true.
Doctor God did not tell me that cataract surgery in and of itself is a risk of triggering diabetic retinapathy. The doctor doing the PRP surgery also did not tell me that both the cataract and the PRP surgery itself risk diabetic retinapathy.
Doctor God also did not tell me that the center of they eye was also filled with blood. As much as I have freely talked about vitreous hemorrhages on this blog, I had no knowledge of them when the Cialis triggered mine.
I had expected to be restored after the cataract surgery. I was not. The vitreous fluid was as blood filled as the cataract had been. The red cloud remained, different but just as bad.
Other doctors, not associated with Koch Eye Associates, have asked me who did the cataract surgery because they were greatly impressed with the technical expertise on the job.
From my first visit to Doctor Michael Negrey, I had mixed feelings. His bedside manner sucked. He wanted to tell and talk and had no patience for patient questions. He had, in that visit, noted something that could be critical, a potential thyroid problem. I paid for the MRI that proved no thyroid concern out of pocket, but I was happy to have a potential problem diagnosed and eliminated. It all goes to informed consent about my own medical care, and I do not begrudge mere money when I am, getting some kind of bang for my buck.
Informed consent is exactly what Dr. Negrey a.k.a. Doctor God, denied me in most every other way.
As I judge by his demeanor, Negrey is God. He is an angry and envious God whose divine judgment is not to be questioned. His patients should bow to him and make sacrifice and worship his power of light and dark.
Doctor God did not tell me the extent of the blood in my eye. He told me that removing the cataract would remove the blood that had filled the cataract and would restore my distance vision like new. Those things were true.
Doctor God did not tell me that cataract surgery in and of itself is a risk of triggering diabetic retinapathy. The doctor doing the PRP surgery also did not tell me that both the cataract and the PRP surgery itself risk diabetic retinapathy.
Doctor God also did not tell me that the center of they eye was also filled with blood. As much as I have freely talked about vitreous hemorrhages on this blog, I had no knowledge of them when the Cialis triggered mine.
I had expected to be restored after the cataract surgery. I was not. The vitreous fluid was as blood filled as the cataract had been. The red cloud remained, different but just as bad.
Thursday, November 10, 2011
Sticking it to patients...and taxpayers
Nurses prepped me for the cataract surgery. This remains the most memorable part of the procedure for me, probably because the pre-op routine struck a cord with me.
They clamped an oxygen monitor on my finger. This device provides a constant reading on the blood’s oxygen levels to ensure the anaesthesiologists don’t overdo the happy gas. Then the nurses started a rather problematic test of my blood sugar by the standard lancet- and strip-using meter.
My question as to why they did not use a scanning device such as the oxygen monitor confused them.
The oxygen monitor in no was breaks the skin to read the oxygen levels in the blood beneath the skin. Perhaps if I had asked "if there was such a blood sugar testing device" they would not have been confused. But I was specific in asking why they weren’t using one.
You see, I know the technology exists. I read in a newspaper in the 1990’s about the development. I’ve seen information about such devices on the US patent website. Yet healthcare professionals who do healthcare as means of making money, have no vested interested in seeing or remembering information about what is in this technological age, an absolute viability.
y tested my blood sugar. That didn’t go so well as they were having problems with the meter itself, then with finding lancets. They went to a different meter. If I wasn’t afraid of payback inflicted while I was under anaesthesia, I would have howled in pain when they jabbed my finger and carried on with the performance for a while. I have been known to entertain myself like that before, but didn’t want to wake up to find my penis dyed with iodine or something.
I was patient with the nurses, who were having considerable difficulty with this procedure that is so basic that senile elderly people are encouraged to do it at home.
The technology exists that anyone should be able to home test their blood sugar with a device that can read the blood sugar through the skin without breaking or puncturing the skin. The technology exists.
So why isn’t it available? Economics.
The meter companies give away meters readily. They’re not making money on the meter They make money hand over fist by selling the chemical test strips that read the sugar level and the lancets used to make the hole in the finger from which diabetic blood flows. A device that needs no test strip and needs no needle to poke the skin would put the strip and lancet manufacturers out of business. These companies with economic interests directly at odds with the benefit of the patients they sell to buy and bury the technologies that would vastly improve the lives of diabetics in physical and financial comfort.
You pay for that with every tax dollar that goes to medicaid..
They clamped an oxygen monitor on my finger. This device provides a constant reading on the blood’s oxygen levels to ensure the anaesthesiologists don’t overdo the happy gas. Then the nurses started a rather problematic test of my blood sugar by the standard lancet- and strip-using meter.
My question as to why they did not use a scanning device such as the oxygen monitor confused them.
The oxygen monitor in no was breaks the skin to read the oxygen levels in the blood beneath the skin. Perhaps if I had asked "if there was such a blood sugar testing device" they would not have been confused. But I was specific in asking why they weren’t using one.
You see, I know the technology exists. I read in a newspaper in the 1990’s about the development. I’ve seen information about such devices on the US patent website. Yet healthcare professionals who do healthcare as means of making money, have no vested interested in seeing or remembering information about what is in this technological age, an absolute viability.
y tested my blood sugar. That didn’t go so well as they were having problems with the meter itself, then with finding lancets. They went to a different meter. If I wasn’t afraid of payback inflicted while I was under anaesthesia, I would have howled in pain when they jabbed my finger and carried on with the performance for a while. I have been known to entertain myself like that before, but didn’t want to wake up to find my penis dyed with iodine or something.
I was patient with the nurses, who were having considerable difficulty with this procedure that is so basic that senile elderly people are encouraged to do it at home.
The technology exists that anyone should be able to home test their blood sugar with a device that can read the blood sugar through the skin without breaking or puncturing the skin. The technology exists.
So why isn’t it available? Economics.
The meter companies give away meters readily. They’re not making money on the meter They make money hand over fist by selling the chemical test strips that read the sugar level and the lancets used to make the hole in the finger from which diabetic blood flows. A device that needs no test strip and needs no needle to poke the skin would put the strip and lancet manufacturers out of business. These companies with economic interests directly at odds with the benefit of the patients they sell to buy and bury the technologies that would vastly improve the lives of diabetics in physical and financial comfort.
You pay for that with every tax dollar that goes to medicaid..
Wednesday, November 9, 2011
The Cataract Procedure
After five rounds of PRP laser surgery by Dr. O’Brien, Dr. Negrey performed the cataract surgery on 25 January, 2010. The date of the procedure was already greatly delayed beyond my expectations. I wanted the blood filled cataract removed so that I could begin to reclaim the life taken from me by the Cialis induced hemorrhage the prior October. Here’s my experience of the procedure.
40 years old at the time, I know of no one younger to have undergone the procedure. The cataract had been treatable with glasses until the vitreous hemorrhage had filled the cataract with blood.
I went in a couple days before the surgery for the prep. Dr. Negrey did not participate. I found that OK because his God Complex was getting on my nerves by then anyway. An assistant gave me standard forms to sign and instructions on how to use the eye drops necessary after the surgery to prevent infection.
Nurses set me up for the surgery. They clamped a monitor on my finger. This helps anaesthesiologists know how much happy gas is too much. Then they tested my blood sugar. That didn’t go so well as they were having problems with the meter, then with finding lancets. They went to a different meter. They raised some concern about the feedback number in the 200’s, which is actually low for me. I convinced them not to worry about that. What would be a big digression here will wait for future posts.
I was put under.
I woke. I stayed looped, even though I think the anaesthesia was more of a local and/or cognitive than
a total body knock out. I don’t remember the vision right after the procedure, or the ride home. I stayed groggy. Never one with a regular sleeping pattern, I slept when I got dropped off at home.
I never had better vision in my life than when I woke up that night. I stayed in bed and just looked out the fourth floor windows . The panoramic view had never reached out to me with such clarity. I could see Crazy Nancy’s house through the concealment of overgrowth. I could see the individual clapboards and roofing shingles of the houses across the street. Distant lights beyond the treetops shone with definition I could not have previously imagined. Even in the city, I could see the brighter stars in the winter sky.
I was seen for follow ups twice following the surgery. Had questions for Dr. Negrey, and I fired those away in the first follow up. I was not satisfied with the answers. In fact, I was so dissatisfied that I called the Koch Eye Associate offices to ensure that my next follow up would be with a different doctor. I didn’t have to do that. Obviously questioning Doctor God had been such an affront that he had already dropped me and my second appointment was with a different doctor.
My roommate was diligent with they eye drops. I developed no infection. I had no complications from the cataract surgery, and other doctors since have complimented the technical quality of Negrey’s work.
"No complications," however, does not mean no adverse effects....
40 years old at the time, I know of no one younger to have undergone the procedure. The cataract had been treatable with glasses until the vitreous hemorrhage had filled the cataract with blood.
I went in a couple days before the surgery for the prep. Dr. Negrey did not participate. I found that OK because his God Complex was getting on my nerves by then anyway. An assistant gave me standard forms to sign and instructions on how to use the eye drops necessary after the surgery to prevent infection.
Nurses set me up for the surgery. They clamped a monitor on my finger. This helps anaesthesiologists know how much happy gas is too much. Then they tested my blood sugar. That didn’t go so well as they were having problems with the meter, then with finding lancets. They went to a different meter. They raised some concern about the feedback number in the 200’s, which is actually low for me. I convinced them not to worry about that. What would be a big digression here will wait for future posts.
I was put under.
I woke. I stayed looped, even though I think the anaesthesia was more of a local and/or cognitive than
a total body knock out. I don’t remember the vision right after the procedure, or the ride home. I stayed groggy. Never one with a regular sleeping pattern, I slept when I got dropped off at home.
I never had better vision in my life than when I woke up that night. I stayed in bed and just looked out the fourth floor windows . The panoramic view had never reached out to me with such clarity. I could see Crazy Nancy’s house through the concealment of overgrowth. I could see the individual clapboards and roofing shingles of the houses across the street. Distant lights beyond the treetops shone with definition I could not have previously imagined. Even in the city, I could see the brighter stars in the winter sky.
I was seen for follow ups twice following the surgery. Had questions for Dr. Negrey, and I fired those away in the first follow up. I was not satisfied with the answers. In fact, I was so dissatisfied that I called the Koch Eye Associate offices to ensure that my next follow up would be with a different doctor. I didn’t have to do that. Obviously questioning Doctor God had been such an affront that he had already dropped me and my second appointment was with a different doctor.
My roommate was diligent with they eye drops. I developed no infection. I had no complications from the cataract surgery, and other doctors since have complimented the technical quality of Negrey’s work.
"No complications," however, does not mean no adverse effects....
Tuesday, November 8, 2011
Dancing in the Dark
I had wanted all the procedures done by Christmas 2009. The vitreous hemorrhage had not just taken most of the sight of my only functioning eye. I’d worked too hard since my teen years to build a self sufficient life. Blindness was taking that as well.
What had started as a bright blood red sheen that filtered my vision had quickly become a reddish brown haze, a perpetual fog that could not be seen through. For a week or so, I could still read books with larger print, but when the blood mixed with the natural eye fluids, I lost even that simple pleasure.
I’m not a TV person in general. I found dateline murder mysteries could be enjoyed even without sight; most everything else relied on visual cues that reminded me of everything I was missing.
My first anthology publication saw print in October 2009. I found myself unable to proofread even my own story, never mind enjoy the ones that were new to me.
I had gotten pretty bored with audio books after I’d borrowed the last of the Kate Wilhelm mysteries available throughout Rhode Island’s library network and was still feeling disappointed that none of her science fiction–and few of any science fiction titles that sat on my unread bookshelf–were available.
I continued to bowl; teammates would tell me what pins remained after the first ball and I would aim my straight ball proportionately from the dark contrast of the gutters. Amazingly enough I lost only about ten pins off my admittedly low average.
I had prepared two holiday meals unassisted. I recovered some ability to use the computer with a 32-inch TV as a monitor and a magnifying mouse.
I had found it necessary to hire someone to plow snow around my plow equipped jeep. I was not able to work, and the delay of two years ago still has an avalanche of things never caught up to my satisfaction.
I lived as fully as I could, but it was not enough for me. I wanted the cataract surgery with its implied promise of clearing the ruddy cloud out from under the bubbled lense.
I had grown bored
I could not find balance in my relationships. I felt like a useless burden. Those helping me the most inadvertently took away another piece of my self with every favor, all of which were and are still appreciated. I was always the caretaker, the one who banked favors with no intention of ever needing to cash out. Those who were there for me have my eternal gratitude, no matter what twists and turns change the relationships. Others disappointed with their inability to adjust to their stoic friend possibly needing something every now and then.
Perhaps I had been too successful in my lifelong fight for independence.
Even blind, I could see myself losing that.
I had to wait three weeks between the fifth PRP session and the cataract surgery that I expected to clear my eye.
It couldn’t happen soon enough.
What had started as a bright blood red sheen that filtered my vision had quickly become a reddish brown haze, a perpetual fog that could not be seen through. For a week or so, I could still read books with larger print, but when the blood mixed with the natural eye fluids, I lost even that simple pleasure.
I’m not a TV person in general. I found dateline murder mysteries could be enjoyed even without sight; most everything else relied on visual cues that reminded me of everything I was missing.
My first anthology publication saw print in October 2009. I found myself unable to proofread even my own story, never mind enjoy the ones that were new to me.
I had gotten pretty bored with audio books after I’d borrowed the last of the Kate Wilhelm mysteries available throughout Rhode Island’s library network and was still feeling disappointed that none of her science fiction–and few of any science fiction titles that sat on my unread bookshelf–were available.
I continued to bowl; teammates would tell me what pins remained after the first ball and I would aim my straight ball proportionately from the dark contrast of the gutters. Amazingly enough I lost only about ten pins off my admittedly low average.
I had prepared two holiday meals unassisted. I recovered some ability to use the computer with a 32-inch TV as a monitor and a magnifying mouse.
I had found it necessary to hire someone to plow snow around my plow equipped jeep. I was not able to work, and the delay of two years ago still has an avalanche of things never caught up to my satisfaction.
I lived as fully as I could, but it was not enough for me. I wanted the cataract surgery with its implied promise of clearing the ruddy cloud out from under the bubbled lense.
I had grown bored
I could not find balance in my relationships. I felt like a useless burden. Those helping me the most inadvertently took away another piece of my self with every favor, all of which were and are still appreciated. I was always the caretaker, the one who banked favors with no intention of ever needing to cash out. Those who were there for me have my eternal gratitude, no matter what twists and turns change the relationships. Others disappointed with their inability to adjust to their stoic friend possibly needing something every now and then.
Perhaps I had been too successful in my lifelong fight for independence.
Even blind, I could see myself losing that.
I had to wait three weeks between the fifth PRP session and the cataract surgery that I expected to clear my eye.
It couldn’t happen soon enough.
Monday, November 7, 2011
The PRP Sessions
If Doctor Michael O’Brien at Koch Eye Associates had used the typical scare tactic "You’ll be blind in six months without PRP treatment," I would have run like hell. O’Brien did not raise those red flags. His calm and friendly argument that other doctors had been OK with not rushing into PRP was that now something had happened and I could not put it off. He also never openly contradicted or doubted that the Cialis had caused the massive vitreous hemorrhage. Whether he believed that or not I do not know. Unlike his associate Dr. God Michel Negrey, O’Brien possessed a congenial bedside manner.
Koch Eye charges for a three month window of PRP sessions. I first went under the laser on 2 November 2009 and again on 9 November, followed by an exam on the 17th. During the 30 November exam, I reported seeing flashers following the procedure on the 23rd. O’Brien did not really answer. He employed his interpersonal skills to calm the concerns as normal and nothing to be concerned about.
I did not fully accept this, but felt as though I was committed to seeing the entire planned regimen through to the end. What shape was I in to make decisions? By this time, I was seeing the world through a brownish red have of blood and wanted to get O’Brien’s green light for Negrey to perform the cataract surgery that promised to clear up that problem.
O’Brien put me under the laser again on 7 December. He waited until the 18th for the next exam. I endured another PRP session on December 21st. The holidays, presumably, delayed the next exam until 4 January 2010.
I had wanted it all done by that time.
I had lost my life to helplessness. I had told O’Brien that I had wanted to be up and running by Christmas. That deadline came and went, sliding unseen through the ruddy haze.
On the 4 January exam, after five PRP sessions, O’Brien lit the green light for the cataract surgery. That green light looked a sickly brown to me, distant and dim in the fog, but I still reached for the light.
Negrey’s office scheduled he cataract surgery for 25 January, 2010.
Koch Eye charges for a three month window of PRP sessions. I first went under the laser on 2 November 2009 and again on 9 November, followed by an exam on the 17th. During the 30 November exam, I reported seeing flashers following the procedure on the 23rd. O’Brien did not really answer. He employed his interpersonal skills to calm the concerns as normal and nothing to be concerned about.
I did not fully accept this, but felt as though I was committed to seeing the entire planned regimen through to the end. What shape was I in to make decisions? By this time, I was seeing the world through a brownish red have of blood and wanted to get O’Brien’s green light for Negrey to perform the cataract surgery that promised to clear up that problem.
O’Brien put me under the laser again on 7 December. He waited until the 18th for the next exam. I endured another PRP session on December 21st. The holidays, presumably, delayed the next exam until 4 January 2010.
I had wanted it all done by that time.
I had lost my life to helplessness. I had told O’Brien that I had wanted to be up and running by Christmas. That deadline came and went, sliding unseen through the ruddy haze.
On the 4 January exam, after five PRP sessions, O’Brien lit the green light for the cataract surgery. That green light looked a sickly brown to me, distant and dim in the fog, but I still reached for the light.
Negrey’s office scheduled he cataract surgery for 25 January, 2010.
Sunday, November 6, 2011
Feedback 1
Addressing reader concerns:
Comments are welcome. Anyone who feels that their thoughts shouldn’t be pubic for any reason are free to privately e-mail me. E-mail links are common on my kozzi.us page.
Light sensitivity is a standard complication of diabetes. I have found no internet mention that the dilated light tests are a probable cause. A good part of the blog’s intention is to get my crazy theories out there. I don’t think they’re all that crazy. They need to be out there to be considered. We live in a country where healthcare is a capitalist venture. Doctors will run every test they can get paid for, as often as they can get paid for them. From my experience they are not forthcoming in volunteering potential risks or side effects. More scarey, some doctors will deny the risks and side effects even when asked. My GP is big on that. He often just brushes off specific concerns as me being a difficult patient rather than discussing the my concerns.
I understand that doctors do not want to discourage anyone from having treatment they need, but too many will give more treatment than needed if there’s a buck to be made. I am a strong believer that patients need to be fully informed to enable the best decisions. Whether it’s minor light sensitivity or something major, such as Cialis and Viagra causing a massive stroke or hemorrhage in the eye, the patient should be told of the risks so he can make his own decision. Patients should not have to independently research things . Doctors should not rely on pharmacists to prevent drug interactions.
I have always believed that, and the experiences that conveyed on this site show the importance of patient knowledge and dire consequences of their ignorance.
Shame on doctors who do not cover every detail of these risks. Relying on the patient to ask is not appropriate. If a patient has never heard of something cannot ask about it.
The same reader was unsure of my statements about the "retina weld" as a benefit of PRP surgery. Not every site I have researched to fact check lists it. More than one did. Instead of calling the benefit a "weld" I’ll qualify it that it can retain the retina’s contact to the back of the eye. There is NO benefit of PRP surgery that even approximates re-attachment of a retina that has begun to separate.
I do aim for accuracy, especially when trying to make complicated terms and procedures more understandable than many doctors would prefer.
Tomorrow, back to my procedures in January 2010. It should be as entertaining as watching a blind guy walk into a ladies’ room because his roommate can’t tell the difference between "first door on the right" and "first door on the left."
Yes, that happened today. My apologies to the women in there when I left the stall. They weren’t there when I went in.
And I think I left the seat up.
Comments are welcome. Anyone who feels that their thoughts shouldn’t be pubic for any reason are free to privately e-mail me. E-mail links are common on my kozzi.us page.
Light sensitivity is a standard complication of diabetes. I have found no internet mention that the dilated light tests are a probable cause. A good part of the blog’s intention is to get my crazy theories out there. I don’t think they’re all that crazy. They need to be out there to be considered. We live in a country where healthcare is a capitalist venture. Doctors will run every test they can get paid for, as often as they can get paid for them. From my experience they are not forthcoming in volunteering potential risks or side effects. More scarey, some doctors will deny the risks and side effects even when asked. My GP is big on that. He often just brushes off specific concerns as me being a difficult patient rather than discussing the my concerns.
I understand that doctors do not want to discourage anyone from having treatment they need, but too many will give more treatment than needed if there’s a buck to be made. I am a strong believer that patients need to be fully informed to enable the best decisions. Whether it’s minor light sensitivity or something major, such as Cialis and Viagra causing a massive stroke or hemorrhage in the eye, the patient should be told of the risks so he can make his own decision. Patients should not have to independently research things . Doctors should not rely on pharmacists to prevent drug interactions.
I have always believed that, and the experiences that conveyed on this site show the importance of patient knowledge and dire consequences of their ignorance.
Shame on doctors who do not cover every detail of these risks. Relying on the patient to ask is not appropriate. If a patient has never heard of something cannot ask about it.
The same reader was unsure of my statements about the "retina weld" as a benefit of PRP surgery. Not every site I have researched to fact check lists it. More than one did. Instead of calling the benefit a "weld" I’ll qualify it that it can retain the retina’s contact to the back of the eye. There is NO benefit of PRP surgery that even approximates re-attachment of a retina that has begun to separate.
I do aim for accuracy, especially when trying to make complicated terms and procedures more understandable than many doctors would prefer.
Tomorrow, back to my procedures in January 2010. It should be as entertaining as watching a blind guy walk into a ladies’ room because his roommate can’t tell the difference between "first door on the right" and "first door on the left."
Yes, that happened today. My apologies to the women in there when I left the stall. They weren’t there when I went in.
And I think I left the seat up.
Saturday, November 5, 2011
Scare Tactics
I understand the natural questions that come about from some of my past decisions concerning my health. The post "Braying to a new God" begs the question, "How can you be so >censored< stupid to not have PP surgery after you were told that you would be blind in six months?!"
The answer may clue in a lot of people who often just shake their head at me with complete incomprehension.
I was an average sized child when the diabetes struck at age 4. Upon entering first grade at the age of 6, I was 45 pounds. Upon entering third grade at age 8, I was 45 pounds.
My mother would see me just glance in the direction of a stray Oreo, and she would warn me "If you eat that, the doctors will have to cut your toes off." Sometimes, it was "If you eat that you’ll go blind." The problem with that was that I had neither gone blind nor had toes cut off when I did secretly seize a stray Oreo. I already knew the scare tactics were untrue.
My parents were not well educated in diabetes care. The family pediatrician was an old stout German woman who wore too much perfume and had a remarkable inability to color in the lines when it came to her lipstick. She gave most kids lollipops to keep them from hating her. As I couldn’t have candy, every visit I got a crumpled brown bag filled with plastic "toys." These "toys" were the long caps of the plastic guards for the needles that she gleefully jabbed into terrified children, and I was expected to be appreciative that the old bat "got something special" for me. She did not want my parents ever taking us kids to the hospital local to us because she was not affiliated with them. My parents followed the lead of this woman who saw no reason to share control of her patients.
Throughout the first eight years or so of diabetic living, I was seen only by the old world pediatricianl whose management of diabetes remained simple: starve the child to keep the sugar low. Unintentionally, this created a context that needing more insulin was bad and special treatment for diabetes unnecessary.
I can only assume that she saw a patient who neither gained even one pound in two years nor died of starvation as a success.
Growing up diabetic for me was an existence of denial and limitations in an atmosphere that diabetes needed no care beyond that of a "healthy" child. Scare tactics saw favor over more complicated things like discussion. I’m not inclined to believe any authority "because they say so."
I’ve eaten Oreos and have lost no toes.
The answer may clue in a lot of people who often just shake their head at me with complete incomprehension.
I was an average sized child when the diabetes struck at age 4. Upon entering first grade at the age of 6, I was 45 pounds. Upon entering third grade at age 8, I was 45 pounds.
My mother would see me just glance in the direction of a stray Oreo, and she would warn me "If you eat that, the doctors will have to cut your toes off." Sometimes, it was "If you eat that you’ll go blind." The problem with that was that I had neither gone blind nor had toes cut off when I did secretly seize a stray Oreo. I already knew the scare tactics were untrue.
My parents were not well educated in diabetes care. The family pediatrician was an old stout German woman who wore too much perfume and had a remarkable inability to color in the lines when it came to her lipstick. She gave most kids lollipops to keep them from hating her. As I couldn’t have candy, every visit I got a crumpled brown bag filled with plastic "toys." These "toys" were the long caps of the plastic guards for the needles that she gleefully jabbed into terrified children, and I was expected to be appreciative that the old bat "got something special" for me. She did not want my parents ever taking us kids to the hospital local to us because she was not affiliated with them. My parents followed the lead of this woman who saw no reason to share control of her patients.
Throughout the first eight years or so of diabetic living, I was seen only by the old world pediatricianl whose management of diabetes remained simple: starve the child to keep the sugar low. Unintentionally, this created a context that needing more insulin was bad and special treatment for diabetes unnecessary.
I can only assume that she saw a patient who neither gained even one pound in two years nor died of starvation as a success.
Growing up diabetic for me was an existence of denial and limitations in an atmosphere that diabetes needed no care beyond that of a "healthy" child. Scare tactics saw favor over more complicated things like discussion. I’m not inclined to believe any authority "because they say so."
I’ve eaten Oreos and have lost no toes.
Friday, November 4, 2011
Braying to a new God
On my own, I do not remember the details of the 1998 examination. I remembered where the office was, but not the name of the practice or the attending doctor. I remembered only broad strokes.
The detailed recollection came after a search through old file folders. A letter from Dr. Arthur Geltzer thanks Dr. Krosschell’s office for the referral and provided a recap of the exam. I haven’t looked at it in years, maybe not since cramming it in the file.
I do independently remember that Geltzer asked general health questions and I stated I was healthy. I remember his response, this declarative statement said in the tone of a commandment. "If you’re a diabetic, you’re not healthy."
I also remember Geltzer’s prognosis. I’d heard the same prognosis word for word eight years before. If I didn’t have the PRP laser surgery ":you will be blind in six months."
Actually, I lied. It wasn’t quite word for word. When I heard it from the quack at Vision World in 1990, he had said "If you don’t have that surgery, you will be blind in six months.
Geltzer’s warning was an imperative laced with God Complex. "If I don’t do this surgery, you will be blind in six months."
I suppose I should have dropped to my knees and prayed to the exalted doctor Geltzer. He would strike with his holy lightning as red lasers burning into the back of my eyes and he would cure me.
His God Complex was so bad, that he extended his plan for living in his Godly image. "You need to quit your job and get one with health insurance or you need to save your money so I can do this surgery."
He did not mention that preexisting clauses in health plans would have disallowed his laser surgery at a new job for 6 to 18 months after the deadline had faded to black.
He did not mention that clinics at some of the hospitals would do the same procedure at a fraction of the cost.
He did not refer me to any social service program.
He had simply commanded me to marshal whatever forces I had to so he could do the PRP treatment.
That’s what I remember.
The letter I found puts things differently. It states that he found no rubeosis (the growth of abnormal blood vessels on the iris.)
It was Geltzer’s "impression" that I had "neovascular diabetic retinapathy from longstanding diabetes mellitus."
Maybe I’m too jaded, but his having "the impression" doesn’t quite sound the same as a conclusion based on careful examination.
In this letter, Geltzer "also suggested that he, in all likelihood, will need laser in the not-too-distant future."
Maybe I am too jaded. These experiences helped make me that way.
I did hear that "blind in six months" threat once after this. By that third time, it didn’t produce angst. My reaction: "oh, this again."
The detailed recollection came after a search through old file folders. A letter from Dr. Arthur Geltzer thanks Dr. Krosschell’s office for the referral and provided a recap of the exam. I haven’t looked at it in years, maybe not since cramming it in the file.
I do independently remember that Geltzer asked general health questions and I stated I was healthy. I remember his response, this declarative statement said in the tone of a commandment. "If you’re a diabetic, you’re not healthy."
I also remember Geltzer’s prognosis. I’d heard the same prognosis word for word eight years before. If I didn’t have the PRP laser surgery ":you will be blind in six months."
Actually, I lied. It wasn’t quite word for word. When I heard it from the quack at Vision World in 1990, he had said "If you don’t have that surgery, you will be blind in six months.
Geltzer’s warning was an imperative laced with God Complex. "If I don’t do this surgery, you will be blind in six months."
I suppose I should have dropped to my knees and prayed to the exalted doctor Geltzer. He would strike with his holy lightning as red lasers burning into the back of my eyes and he would cure me.
His God Complex was so bad, that he extended his plan for living in his Godly image. "You need to quit your job and get one with health insurance or you need to save your money so I can do this surgery."
He did not mention that preexisting clauses in health plans would have disallowed his laser surgery at a new job for 6 to 18 months after the deadline had faded to black.
He did not mention that clinics at some of the hospitals would do the same procedure at a fraction of the cost.
He did not refer me to any social service program.
He had simply commanded me to marshal whatever forces I had to so he could do the PRP treatment.
That’s what I remember.
The letter I found puts things differently. It states that he found no rubeosis (the growth of abnormal blood vessels on the iris.)
It was Geltzer’s "impression" that I had "neovascular diabetic retinapathy from longstanding diabetes mellitus."
Maybe I’m too jaded, but his having "the impression" doesn’t quite sound the same as a conclusion based on careful examination.
In this letter, Geltzer "also suggested that he, in all likelihood, will need laser in the not-too-distant future."
Maybe I am too jaded. These experiences helped make me that way.
I did hear that "blind in six months" threat once after this. By that third time, it didn’t produce angst. My reaction: "oh, this again."
Thursday, November 3, 2011
Blooderball Turkeys
Small vitreous hemorrhages do occur in the natural course of diabetic retinapathy. The sites I reviewed describe them similarly.
The hemorrhage comes from newer or weaker abnormal vessels. Those vessels bleed a little and the discharges enters the vitreous gel that fills the center cavity of the eye.
Because the vitreous gel has no nerve cells, it feels no pain or pressure. The sufferer of hemorrhages related to diabetic retinapathy alone see dark matter, sometimes tinged red, but usually black or grey. The floaters appear as tiny spots, or flecks of stuff, or in small masses of stringy cloud such as spider webs, the type found in corners, not the ornate stretching ones.
None of the sites I reviewed again in researching this blog describe a vitreous hemorrhage caused by diabetic retinapathy as a massive outlet of enough blood to fill both the venter of the eye and a cataract. All describe diabetic retinapathy caused hemorrhages as minor, even if the patients suffers recurring hemorrhages. None that I encountered describe a diabetic retinapathy hemorrhage as making the patient see bright crimson.
The massive blood letting I watched in my eye was a flow. I saw it start as I woke and I watched it spread throughout the eye in a matter of seconds, like the effects in cheesy horror movies when they end the opening credits with a falling wave of dripping blood.
I bring this up after some conversations about the blog and reviewing medical records from 1998. Dr. Kroschell did not think the isolated 1998 floater was necessarily related to retinapathy.
The doctor he referred me to listed the floater as a vitreous hemorrhage. In his examination, Dr. Arthur Geltzer used a specific phrase that I had heard before....
The hemorrhage comes from newer or weaker abnormal vessels. Those vessels bleed a little and the discharges enters the vitreous gel that fills the center cavity of the eye.
Because the vitreous gel has no nerve cells, it feels no pain or pressure. The sufferer of hemorrhages related to diabetic retinapathy alone see dark matter, sometimes tinged red, but usually black or grey. The floaters appear as tiny spots, or flecks of stuff, or in small masses of stringy cloud such as spider webs, the type found in corners, not the ornate stretching ones.
None of the sites I reviewed again in researching this blog describe a vitreous hemorrhage caused by diabetic retinapathy as a massive outlet of enough blood to fill both the venter of the eye and a cataract. All describe diabetic retinapathy caused hemorrhages as minor, even if the patients suffers recurring hemorrhages. None that I encountered describe a diabetic retinapathy hemorrhage as making the patient see bright crimson.
The massive blood letting I watched in my eye was a flow. I saw it start as I woke and I watched it spread throughout the eye in a matter of seconds, like the effects in cheesy horror movies when they end the opening credits with a falling wave of dripping blood.
I bring this up after some conversations about the blog and reviewing medical records from 1998. Dr. Kroschell did not think the isolated 1998 floater was necessarily related to retinapathy.
The doctor he referred me to listed the floater as a vitreous hemorrhage. In his examination, Dr. Arthur Geltzer used a specific phrase that I had heard before....
If it quacks like a doc...
There’s an old saying that a good excuse is one you can use over and over. That might be true, but not every excuse used over and over is a good one. The diabetes is in the second category.
Today I went to an urgent care center about a foot and ankle that has been sore and swollen for about a month. Nothing’s broken, so it amounts to staying off of it more than I have been. I didn’t think anything was broken by range of movement and other quirks, but it’s good to know for sure. Part of the ongoing concern that sent me to the E was that the prolonged swelling could be symptom of or cause circulation problems in my diabetic foot.
I asked the attending doctor about a cortisone shot. She said they didn’t like giving shots to diabetics because of the increased risk of infection.
Yes. I heard that right and you read it right.
They don’t like giving SHOTS to DIABETICS because of the increased risk of infection.
This does not decrease my cynicism of modern American medicine.
Don’t get me started on the profiteering of unnecessary finger poking for blood sugar testing, up to and including television commercials that showlazy women too self sacrificing to disturb her husband and kids by not getting up off the couch to wash her hands before jabbing her finger. I’m sure that it was simply oversight that the commercial did not show the woman two weeks later having her grossly infected finger amputated. That whole subject will wait for future posts.
Today I went to an urgent care center about a foot and ankle that has been sore and swollen for about a month. Nothing’s broken, so it amounts to staying off of it more than I have been. I didn’t think anything was broken by range of movement and other quirks, but it’s good to know for sure. Part of the ongoing concern that sent me to the E was that the prolonged swelling could be symptom of or cause circulation problems in my diabetic foot.
I asked the attending doctor about a cortisone shot. She said they didn’t like giving shots to diabetics because of the increased risk of infection.
Yes. I heard that right and you read it right.
They don’t like giving SHOTS to DIABETICS because of the increased risk of infection.
This does not decrease my cynicism of modern American medicine.
Don’t get me started on the profiteering of unnecessary finger poking for blood sugar testing, up to and including television commercials that show
Tuesday, November 1, 2011
This is NOT a Test
With the way blogs sort by month and the way I’m rambling in the narrative, seems like a recap is in order
This blog documents one guy’s slow and ongoing descent into blindness. Being diabetic is an underlying factor but not the direct cause.
I have been blind in one eye since 2003 due to diabetic retinapathy being opportunistic of a striation injury to the right eye. Since then, I lived with pretty much full function despite this handicap and meticulously saw retina specialists to chart any potential changes in the good eye. The doctors found no changes in comparative exams.
I went through a couple doctors. Some tried scaring me into immediate PRP laser surgery even though the left eye showed bleeding or signs of active or ongoing retina damage. (Yes, there was old damage as all diabetics will develop just by nature of the disease’s side effects.) Other doctors failed to report factors or conditions that should have wider documentation, or they demonstrated clear unwillingness to communicate with their patients. While I acknowledge that I may get disillusioned by doctors or other "authority figures" if they do not live up to the responsibilities that come with their "power," O see no reason to tolerate bad service or willful failure to communicate (or outright lies, even if "only" by omission) from doctors. This is especially true as I am a self pay patient.
For the first time in my life I saw with rose colored lenses and that was just a vitreous hemorrhage suffered in October 2009. This filled the cataract-debilitated eye with blood. The hemorrhage happened less than 24 hours after I took a Cialis (a Viagra or Levitra type boner pill drug) but did not "take advantage" of the drug’s purpose.
I am not blogging for any call for sympathy. I am making the complicated situation available to those who are usually too polite to ask in person (who’da thunk I even knew people like that.) The blog writing is a step I need to take in the course of accepting that this is my new permanent status quo, until it gets even worse. I have been told by "some" people that I have been an incredibly stubborn ass in the acceptance part. Just because I can do things like drive to the supermarket or use power tools such as chain saws does not mean that I should. Some people yell or lecture when I’m going to do things like that. Other people want to watch.
Yet the most important purpose of this blog is to get information publicly available. This information will include things from my experience that other people, especially diabetics and boner pill users, should know. Things their doctors won’t tell them.
If masturbation can make you go blind, those boner pills can get you there a helluva lot faster.
This blog documents one guy’s slow and ongoing descent into blindness. Being diabetic is an underlying factor but not the direct cause.
I have been blind in one eye since 2003 due to diabetic retinapathy being opportunistic of a striation injury to the right eye. Since then, I lived with pretty much full function despite this handicap and meticulously saw retina specialists to chart any potential changes in the good eye. The doctors found no changes in comparative exams.
I went through a couple doctors. Some tried scaring me into immediate PRP laser surgery even though the left eye showed bleeding or signs of active or ongoing retina damage. (Yes, there was old damage as all diabetics will develop just by nature of the disease’s side effects.) Other doctors failed to report factors or conditions that should have wider documentation, or they demonstrated clear unwillingness to communicate with their patients. While I acknowledge that I may get disillusioned by doctors or other "authority figures" if they do not live up to the responsibilities that come with their "power," O see no reason to tolerate bad service or willful failure to communicate (or outright lies, even if "only" by omission) from doctors. This is especially true as I am a self pay patient.
For the first time in my life I saw with rose colored lenses and that was just a vitreous hemorrhage suffered in October 2009. This filled the cataract-debilitated eye with blood. The hemorrhage happened less than 24 hours after I took a Cialis (a Viagra or Levitra type boner pill drug) but did not "take advantage" of the drug’s purpose.
I am not blogging for any call for sympathy. I am making the complicated situation available to those who are usually too polite to ask in person (who’da thunk I even knew people like that.) The blog writing is a step I need to take in the course of accepting that this is my new permanent status quo, until it gets even worse. I have been told by "some" people that I have been an incredibly stubborn ass in the acceptance part. Just because I can do things like drive to the supermarket or use power tools such as chain saws does not mean that I should. Some people yell or lecture when I’m going to do things like that. Other people want to watch.
Yet the most important purpose of this blog is to get information publicly available. This information will include things from my experience that other people, especially diabetics and boner pill users, should know. Things their doctors won’t tell them.
If masturbation can make you go blind, those boner pills can get you there a helluva lot faster.
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