Even while worsened eyesight and the latest leg crisis combine with other responsibilities to keep me away from my writing, including this blog, the international spammers have kept passing but constant attention to the blog. Real readers wouldn’t notice, because most of my actions have been to delete the link spam posted as comments.
The spam is obvious to me on so many levels. I’m not pounded soft by the empty and insincere compliments to how well written an article is or how I must be an authority on "this topic." I’m not taken in by compliments to the appearance or layout and do not feel the need to give free coaching to people asking what software I use to create the blog. I’m not even going to address the people who post with the advice that the blog needs "more" pictures. This is a blog by and mostly for blind people.
Most of the link spam is posted anonymously. It makes me think back to an online conversation I had with fellow writer Brandon Bell when he was being harassed by someone posting anonymously to his blog. There have been a couple friends or readers who posted legitimately, and I do not want to limit them. I also believe that limited comments in any way can inadvertently lay a foundation for censorship. No one has to agree with me, we just need to disagree respectfully.
Censorship opposition aside, the idea of this blog is to force myself to communicate the experiences of vision loss and diabetes and the other problems that arise. Most of the questions friends and acquaintances have but feel impolite to ask can be answered here. Judging from search engine hits, many other people have gotten useful information among these posts. It’s not a commercial site. If I am not even trying to make money off of it, I see no reason to allow people across the world to post a pasted comments on my blog along with who knows how many other, just so they can end with a link to their commercial sites that hawk things like trick teas, rascally raspberries, gimmicks for overall weight loss or specific weight gain solely to the penis, supplements and non-American approved drugs, cosmetics, prostitution, and the worst among others, boner pills. Do these assholes really think I will allow boner pill links when I have maintained the most frequent label tag as "Cialis = Blindness"?
The spam filters here work very well, and what garbage they do miss, I am quick to delete.
Showing posts with label Blogging Experience. Show all posts
Showing posts with label Blogging Experience. Show all posts
Saturday, July 20, 2013
Saturday, July 6, 2013
Feelings of Abandonment
I have not abandoned this blog, despite the lack of a new post since April. (Forthcoming case in point, no sooner did I write that one line on June 4th when I was distracted away and unable to get back.)
Now it’s July 6th and I believe I can finish a hasty missive.
2013 has left me with an overwhelming sense of loss. On top of reduced capabilities and an attrition of friends, over the time since the eye problems began, I started the year with poor feelings for having sold my car. I can accept the inability to drive more than no longer owning a vehicle.
As the year progressed, I had an eye procedure that brought complication and less result than anyone had hoped. My father passed away, I noticed that the Crow boot-bound leg is losing muscle mass and even routine things took more effort. Even further reduced exertion was more than I found I could handle. I’ve had to give up more, especially when "over" exertion inflamed the tendon in my leg, which re-triggered the Charcot Foot inflammation and ended up ulcerating the ankle. The hole was larger than a silver dollar. More than three months later, it’s about the size of a penny or nickel.
I suffered the worsened by moving prized possessions to a venue for their sale. Despite the pride in ownership, this stuff is heavy and bulky and useless to a blind guy. Removal became critical because the fact that my apartment–in a house I own–is no longer livable for me, even before the reduced eyesight and worsened leg. There’s 34 steps between the street and my apartment; 48 between the street and my bedroom. It’s hard enough getting in the house empty handed. Groceries are outright burdensome.
The eyesight, particularly effects of and adjustment to changes in light, is worse. This limits everything, including functional computer time. Work on fiction projects has stagnated as much as the blog while I try to close out responsibilities and roll with the changes.
Things are looking less bleak. My guardian angels may be masochists, but they are on the job!
Now it’s July 6th and I believe I can finish a hasty missive.
2013 has left me with an overwhelming sense of loss. On top of reduced capabilities and an attrition of friends, over the time since the eye problems began, I started the year with poor feelings for having sold my car. I can accept the inability to drive more than no longer owning a vehicle.
As the year progressed, I had an eye procedure that brought complication and less result than anyone had hoped. My father passed away, I noticed that the Crow boot-bound leg is losing muscle mass and even routine things took more effort. Even further reduced exertion was more than I found I could handle. I’ve had to give up more, especially when "over" exertion inflamed the tendon in my leg, which re-triggered the Charcot Foot inflammation and ended up ulcerating the ankle. The hole was larger than a silver dollar. More than three months later, it’s about the size of a penny or nickel.
I suffered the worsened by moving prized possessions to a venue for their sale. Despite the pride in ownership, this stuff is heavy and bulky and useless to a blind guy. Removal became critical because the fact that my apartment–in a house I own–is no longer livable for me, even before the reduced eyesight and worsened leg. There’s 34 steps between the street and my apartment; 48 between the street and my bedroom. It’s hard enough getting in the house empty handed. Groceries are outright burdensome.
The eyesight, particularly effects of and adjustment to changes in light, is worse. This limits everything, including functional computer time. Work on fiction projects has stagnated as much as the blog while I try to close out responsibilities and roll with the changes.
Things are looking less bleak. My guardian angels may be masochists, but they are on the job!
Wednesday, April 17, 2013
Awkward Silence
The last thing I wanted was to have the flow of posts interrupted where it was, amid observations about how control freaks make the best caregivers. That could sound like An empty or ungrateful criticism of some of the people who have been there for me most. That’s the furthest thing from my intent, partially because my core statement is true: control freaks make the best caregivers. Those without the ability to plow forward can’t do as much and are often not as effective.
When the blood hemorrhage happened, my friend Pat dove into the deep end of my care. For any minor complaint I could raise, I don’t know how I could have gotten through that time without Pat. The cycle of needs almost cost us the friendship. Pat took over more and more, too much for my liking both as someone trying to learn where and when I had to let go, and more as someone traditionally viewed as uncontrollable. Pat put so much time and effort and energy into my care that Pat’s marriage strained. We both needed a reset of the boundaries for our individual well being. That process was the right thing that never felt right to either of us. Pat had said at one point, I had such a look of hatred in my face; that moment had demonstrated the need to back off to Pat. I had unintentionally inflicted a hurt without being aware of it. I barely remember the incident as anything beyond one of my helpless, self-pitying moods.
It’s been three years. I am more adjusted to my situation and all its stark realities. Pat’s marriage has stabilized. We’ve maintained a friendship with roots back into the mid 1980’s. I am grateful for all that.
When the blood hemorrhage happened, my friend Pat dove into the deep end of my care. For any minor complaint I could raise, I don’t know how I could have gotten through that time without Pat. The cycle of needs almost cost us the friendship. Pat took over more and more, too much for my liking both as someone trying to learn where and when I had to let go, and more as someone traditionally viewed as uncontrollable. Pat put so much time and effort and energy into my care that Pat’s marriage strained. We both needed a reset of the boundaries for our individual well being. That process was the right thing that never felt right to either of us. Pat had said at one point, I had such a look of hatred in my face; that moment had demonstrated the need to back off to Pat. I had unintentionally inflicted a hurt without being aware of it. I barely remember the incident as anything beyond one of my helpless, self-pitying moods.
It’s been three years. I am more adjusted to my situation and all its stark realities. Pat’s marriage has stabilized. We’ve maintained a friendship with roots back into the mid 1980’s. I am grateful for all that.
Friday, September 7, 2012
Cynical Optimism
I’m not surprised the "Outright Ranting" post trigger some questions and feedback, which can be summed up almost universally as "why?!"
I’ll explain that willingly, in part because I knew after writing it, and when posting it a couple days later, that it was not my strongest post. Yes, it "meandered all over the place" and lacked focus. It demonstrated some of the simmering anger, and not quite in humorous ways. It was the product of a bad morning of a bad week in a month that proved stressful. There were problems that just happen in August, and while never happy about such things, I can cope with them OK. The true stress entered into things–and almost everything–from other people, not from the generalized circumstances. Whether flesh and blood events or sudden increased difficulty with electronic things posed by developers I’ll never meet, most people involved in most situations seemed to stand up and contribute to the problem instead of the solution. These precise stresses added to more generalized stresses including another decrease in vision and anxieties trigger by the general turmoil in society that political seasons always seem to highlight.
Basically, there’s been ton of crap coming from every direction and a heightened feeling of loss for things I used to be able to do and enjoy. All this contributes to writing such a diatribe. I’ve written things like that before, but seldom post or attempt to publish them. So why did I publish this one, without editing out digressions and diversions?
The first is the minor answer, and, I admit with some shame, pseudo-commercial. The post that strayed far from diabetes, blindness and Charcot foot has a lot of terms that will lead potential new readers here via search engines. This is not so impossible. Recent Google searches that have led people to this electronic space include "+doctor +dumb +ass" and "getting old doesn’t mean you have to get crotchety."
In part because I get so many compliments about how I’ve been handling the losses and disabilities of the past few years that I sometimes feel like a fraud. I truly am handling things well, but some people have this thought that the handling is effortless. The truth is anything but.
I basically am the most optimistic cynic that most people could ever meet. I concentrate on the positive and on what I can do rather than all the things I cannot do well or at all. This takes more effort than most people see. My roommate sees most of the truth, because trying to hide those things even when home would be more than I can shoulder. It can be hard for him to deal with; I can be hard for him to deal with. That cynical optimism tells me I don’t deserve such a loyal friend.
Here this post could reach the place I want no post, or even writing that would remain completely private, to ever go: into the realm o self pitying drivel. I mentioned in a recent post the forthcoming publication of a blindness story "Through Rose-Colored Lenses." I’ve read most of the stories they have published since the time they accepted "Smokestacks" in 2010. I have found most of the stories they publish to be in the self pitying drivel mold. "Lenses" is a comedy. I need to laugh, and can do so at myself. I need to laugh t myself. My sense of humor, admittedly something often mean and offensive in political incorrectness, carries me through. The principle is the same as that crazy theory I postulated in the "offensive" post that suppressing the darkness of our social anger will only boil the anger to rage. I am neither sexist nor racist, although I’ve been accused by many of both and more, based on my sense of humor. As I have gotten older and more worldly, society has increased the list of sacred cows. I try to make the list into a menu.
I’ll explain that willingly, in part because I knew after writing it, and when posting it a couple days later, that it was not my strongest post. Yes, it "meandered all over the place" and lacked focus. It demonstrated some of the simmering anger, and not quite in humorous ways. It was the product of a bad morning of a bad week in a month that proved stressful. There were problems that just happen in August, and while never happy about such things, I can cope with them OK. The true stress entered into things–and almost everything–from other people, not from the generalized circumstances. Whether flesh and blood events or sudden increased difficulty with electronic things posed by developers I’ll never meet, most people involved in most situations seemed to stand up and contribute to the problem instead of the solution. These precise stresses added to more generalized stresses including another decrease in vision and anxieties trigger by the general turmoil in society that political seasons always seem to highlight.
Basically, there’s been ton of crap coming from every direction and a heightened feeling of loss for things I used to be able to do and enjoy. All this contributes to writing such a diatribe. I’ve written things like that before, but seldom post or attempt to publish them. So why did I publish this one, without editing out digressions and diversions?
The first is the minor answer, and, I admit with some shame, pseudo-commercial. The post that strayed far from diabetes, blindness and Charcot foot has a lot of terms that will lead potential new readers here via search engines. This is not so impossible. Recent Google searches that have led people to this electronic space include "+doctor +dumb +ass" and "getting old doesn’t mean you have to get crotchety."
In part because I get so many compliments about how I’ve been handling the losses and disabilities of the past few years that I sometimes feel like a fraud. I truly am handling things well, but some people have this thought that the handling is effortless. The truth is anything but.
I basically am the most optimistic cynic that most people could ever meet. I concentrate on the positive and on what I can do rather than all the things I cannot do well or at all. This takes more effort than most people see. My roommate sees most of the truth, because trying to hide those things even when home would be more than I can shoulder. It can be hard for him to deal with; I can be hard for him to deal with. That cynical optimism tells me I don’t deserve such a loyal friend.
Here this post could reach the place I want no post, or even writing that would remain completely private, to ever go: into the realm o self pitying drivel. I mentioned in a recent post the forthcoming publication of a blindness story "Through Rose-Colored Lenses." I’ve read most of the stories they have published since the time they accepted "Smokestacks" in 2010. I have found most of the stories they publish to be in the self pitying drivel mold. "Lenses" is a comedy. I need to laugh, and can do so at myself. I need to laugh t myself. My sense of humor, admittedly something often mean and offensive in political incorrectness, carries me through. The principle is the same as that crazy theory I postulated in the "offensive" post that suppressing the darkness of our social anger will only boil the anger to rage. I am neither sexist nor racist, although I’ve been accused by many of both and more, based on my sense of humor. As I have gotten older and more worldly, society has increased the list of sacred cows. I try to make the list into a menu.
Friday, August 31, 2012
Outright Ranting....
Waking up and starting off the day with too much despair over the climate in this country, difficulties getting things done and other faulty connections to the world. I want the conservatives to shut up, the liberals to actually keep their word, and developers to stop telling me that being known as "J" is wrong....
There’s something karmic that when I publish a post about how changes in Facebook’s design and operating create big pains in my balls, I find I cannot share the post as a link on Facebook without first joining Google Plus.
With the last post I uploaded, it was a matter of just hitting links that had been in the same place since I created the blog last year. I guess because it was so easy a blind guy could do it, so nerdy developer who felt a need to come up with work that would justify his salary felt the need to make things more complicated.
The experience rankles me in ways that I find the election atmosphere irritating. It’s all input from extremes who try to enforce "how things should be" in the world.
People might understand this leap in my addles thinking if they see the gender options, which are "Male," "Female," and "Other." I propose changing "other" to "SSA" for "Something Scientifically Altered." I know this isn’t politically correct. I don’t care. We’ve gotten to the point that extremist want to purge classic novels of historical importance to purge the word nigger without regard to the historical context and importance. I’ve read one with the Wind and will say with absolute certainty that it would not read the same, and when I read (or listen to) something like that, I want the full monty of historical experience. "Those who forget history are doomed to repeat it" and all that. It’s probably just one of my crazy theories to correlate our repression of unpleasant disparaging things that may be offensive to some people with the rise of repressed rage that ends up spewing out with increased backlash against society...things like nut jobs shooting up movie theaters and kids going to school and shooting the place up.
To make a similar protest against the extremes that impact "my own kind," there are special handling laws for the blind. If a landlord is advertising an apartment, he cannot say "a short walk" to the busline" or "nice view." This is legally discriminatory in some states (including the one I live in) because not everyone (like me) can walk and not everyone (like me) can see. I don’t think that my limitations should be used as a restriction to what other people can say and do.
It all amounts to inconvenience for some based on the limitations and sensitivities and mandates of others.
All I wanted to do is post a link as I have on almost every post for the last year. Facebook has otherwise become mostly useless to me. I still try to do productive things on the computer and still must do things on the computer, but browsing a bright screen is neither comfortable nor pleasant to someone with extreme light sensitivity. I don’t want to join a Google Community. Don’t want to be publishing my birthday or seeming antisocial because I decline invitations to Mafia Wars and Farmville. about things that
That putting myself as "J Kozzi" violates the name policy. I suppose that my name is Jeff but most people call me "Jay" makes me a violation of all that’s right in the world. Clear warning to all you Plus 1’ers: I very obviously lied about my birthday. I am not embarrassed about my age of 43. I don’t need every pseudo friend bogging my limited time with productive vision with trivial birthday wishes, any more than I want my writing time bogged down with page after page of electronic social and privacy disclosures with pictures and contact lists and telling about myself...all on pages complicated enough that the "continue" button is not aligned with the basic page flow and thus necessitate clicking the magnifier on and off so I can search and scroll each page in two direction. And it doesn’t help my surly disposition to have some of those "continues invisible because the Google developers are so afraid I will be lonely online that only the "add more friends" option is in the "continue blue."
I ended up having to close out the window. I assume because they thought I was lacking friends, I got a news feed of people I neither know nor care to know talking about Power Fabric, and this blind guy couldn’t find the escape button that theoretically should have taken me back so I could post my link to Facebook for the "Notifications" post.
In the end, they still had direct links that could have let me link directly, but that was put under an ambiguous "More" link that was nowhere near as prominent as the "Share" link that now only allows Google+ sharing. There’s an hour of my life wasted, especially because the new FB share link would not close properly. This forced me to go to FB and try to navigate more complex and complicated screens just to make sure the link actually went through.
I am not interested in increasing social media. I just want to post the Blindsided! pieces and link them to the social media that I’ve been part of for years and can no longer effectively use. Google, please leave me alone on anything and everything except video clips of your developers getting their skulls bashed in with baseball bats.
There’s something karmic that when I publish a post about how changes in Facebook’s design and operating create big pains in my balls, I find I cannot share the post as a link on Facebook without first joining Google Plus.
With the last post I uploaded, it was a matter of just hitting links that had been in the same place since I created the blog last year. I guess because it was so easy a blind guy could do it, so nerdy developer who felt a need to come up with work that would justify his salary felt the need to make things more complicated.
The experience rankles me in ways that I find the election atmosphere irritating. It’s all input from extremes who try to enforce "how things should be" in the world.
People might understand this leap in my addles thinking if they see the gender options, which are "Male," "Female," and "Other." I propose changing "other" to "SSA" for "Something Scientifically Altered." I know this isn’t politically correct. I don’t care. We’ve gotten to the point that extremist want to purge classic novels of historical importance to purge the word nigger without regard to the historical context and importance. I’ve read one with the Wind and will say with absolute certainty that it would not read the same, and when I read (or listen to) something like that, I want the full monty of historical experience. "Those who forget history are doomed to repeat it" and all that. It’s probably just one of my crazy theories to correlate our repression of unpleasant disparaging things that may be offensive to some people with the rise of repressed rage that ends up spewing out with increased backlash against society...things like nut jobs shooting up movie theaters and kids going to school and shooting the place up.
To make a similar protest against the extremes that impact "my own kind," there are special handling laws for the blind. If a landlord is advertising an apartment, he cannot say "a short walk" to the busline" or "nice view." This is legally discriminatory in some states (including the one I live in) because not everyone (like me) can walk and not everyone (like me) can see. I don’t think that my limitations should be used as a restriction to what other people can say and do.
It all amounts to inconvenience for some based on the limitations and sensitivities and mandates of others.
All I wanted to do is post a link as I have on almost every post for the last year. Facebook has otherwise become mostly useless to me. I still try to do productive things on the computer and still must do things on the computer, but browsing a bright screen is neither comfortable nor pleasant to someone with extreme light sensitivity. I don’t want to join a Google Community. Don’t want to be publishing my birthday or seeming antisocial because I decline invitations to Mafia Wars and Farmville. about things that
That putting myself as "J Kozzi" violates the name policy. I suppose that my name is Jeff but most people call me "Jay" makes me a violation of all that’s right in the world. Clear warning to all you Plus 1’ers: I very obviously lied about my birthday. I am not embarrassed about my age of 43. I don’t need every pseudo friend bogging my limited time with productive vision with trivial birthday wishes, any more than I want my writing time bogged down with page after page of electronic social and privacy disclosures with pictures and contact lists and telling about myself...all on pages complicated enough that the "continue" button is not aligned with the basic page flow and thus necessitate clicking the magnifier on and off so I can search and scroll each page in two direction. And it doesn’t help my surly disposition to have some of those "continues invisible because the Google developers are so afraid I will be lonely online that only the "add more friends" option is in the "continue blue."
I ended up having to close out the window. I assume because they thought I was lacking friends, I got a news feed of people I neither know nor care to know talking about Power Fabric, and this blind guy couldn’t find the escape button that theoretically should have taken me back so I could post my link to Facebook for the "Notifications" post.
In the end, they still had direct links that could have let me link directly, but that was put under an ambiguous "More" link that was nowhere near as prominent as the "Share" link that now only allows Google+ sharing. There’s an hour of my life wasted, especially because the new FB share link would not close properly. This forced me to go to FB and try to navigate more complex and complicated screens just to make sure the link actually went through.
I am not interested in increasing social media. I just want to post the Blindsided! pieces and link them to the social media that I’ve been part of for years and can no longer effectively use. Google, please leave me alone on anything and everything except video clips of your developers getting their skulls bashed in with baseball bats.
Thursday, August 30, 2012
Notifications
Now I’m about ready to start signing those online "petitions" that tell the world "Facebook made changes I hate" or the simpler "I hate Facebook" or "Boycott Facebook." Two things keep me from doing that. The first is that I find it silly. The second is that finding those things would be a major waste of time and energy, perhaps without success.
I can see enough to use the computer only with a tandem of aid. I use a 32-inch TV as a monitor. I need the otherwise useless glasses on. I enlarge the zooms in programs and/or use big font sizes. Font sizes for emails usually have to be reduced when cut and paste into the email so people do not think I am "yelling." I use a mouse that has an option of a magnifying square.
I navigate web pages in part by familiarity in knowing where to find specific things such as links. When pages or sites I am familiar with change, this throws major chaos into my world and wastes a lot of time. U can see general shapes and layout of entire pages, or I can see details like words in limited areas. I can’t do both, and searching with the magnifier can be a dizzying experience. I cannot see an entire line of type, so need to keep moving the magnifier from end of line to front and hope I don’t overdo the vertical axis so much that I lose the line.
I am not complaining outright. I am grateful I have retained enough to be able to get by on anything on my own. It would be awkward to vent irritations about my roommate to electronic friends if the roommate had to type the emails.
Hover menus for links are impractical. I usually cannot see the appearing list while still hovering over the button that triggered the submenu. Moving the magnifier a little bit to see the list triggers a new list or makes the first one disappear. These features are nifty little developer tools and may scream "modern website" but they are not the best use for all sites and can discourage readers. The barrier can be to visually disabled such as myself, but can also effect people with unsteady hands and other disabilities.
Facebook also made changes this summer, beyond corporate structural changes that drained investors of money. Earlier this year, I could find things on the sire’s complex but not complicated layout, and they sent automatic emails for friend requests and messages. They stopped doing that. I missed a number of messages and had begun to wonder why I had become such a pariah that no one ever answered any of my messages.
Worse, the basic page has become outright complicated with multiple window panes and boxes. I couldn’t find the links to send messages, so I resorted to sniping people who were online with the IM then logging off. Up until recently, I’d get a regular email that would clearly link me to any response. I can handle regular email much easier and recommend it to friends.
Don’t send me texts; I can’t see my phone screen at all.
The magnifying mouse is invaluable to me. It makes the section of screen I am viewing really bigger inside a box that moves when I move the mouse. In doing so, it displaces the regular
I can see enough to use the computer only with a tandem of aid. I use a 32-inch TV as a monitor. I need the otherwise useless glasses on. I enlarge the zooms in programs and/or use big font sizes. Font sizes for emails usually have to be reduced when cut and paste into the email so people do not think I am "yelling." I use a mouse that has an option of a magnifying square.
I navigate web pages in part by familiarity in knowing where to find specific things such as links. When pages or sites I am familiar with change, this throws major chaos into my world and wastes a lot of time. U can see general shapes and layout of entire pages, or I can see details like words in limited areas. I can’t do both, and searching with the magnifier can be a dizzying experience. I cannot see an entire line of type, so need to keep moving the magnifier from end of line to front and hope I don’t overdo the vertical axis so much that I lose the line.
I am not complaining outright. I am grateful I have retained enough to be able to get by on anything on my own. It would be awkward to vent irritations about my roommate to electronic friends if the roommate had to type the emails.
Hover menus for links are impractical. I usually cannot see the appearing list while still hovering over the button that triggered the submenu. Moving the magnifier a little bit to see the list triggers a new list or makes the first one disappear. These features are nifty little developer tools and may scream "modern website" but they are not the best use for all sites and can discourage readers. The barrier can be to visually disabled such as myself, but can also effect people with unsteady hands and other disabilities.
Facebook also made changes this summer, beyond corporate structural changes that drained investors of money. Earlier this year, I could find things on the sire’s complex but not complicated layout, and they sent automatic emails for friend requests and messages. They stopped doing that. I missed a number of messages and had begun to wonder why I had become such a pariah that no one ever answered any of my messages.
Worse, the basic page has become outright complicated with multiple window panes and boxes. I couldn’t find the links to send messages, so I resorted to sniping people who were online with the IM then logging off. Up until recently, I’d get a regular email that would clearly link me to any response. I can handle regular email much easier and recommend it to friends.
Don’t send me texts; I can’t see my phone screen at all.
The magnifying mouse is invaluable to me. It makes the section of screen I am viewing really bigger inside a box that moves when I move the mouse. In doing so, it displaces the regular
Tuesday, August 7, 2012
The ADA Wants You{r Money}
I looked over the main site of the American Diabetes Association, http://www.diabetes.org/ in late July, 2012.
The site name indicates that the ADA "owns" diabetes. Technically with the way domain names are managed, they do, at least on the .org level. The dot-com version is owned by Health Coach. The irony is that the ADA’s "org" site comes across as a lot more commercial.
"Donate" is more prominent on the main navigation bar than "News and Research" is. The prominent upper left directly below the navigation bar has changing content that confuses us who have visual impairment. The other images in the spot sell a book; beg for donations; advertise for a meal planning site; and entice browsers to be the first to raise $1,000 online in order to receive a free necklace. Th four advertising spots cycle endlessly.
Other elements of the site sell tote bags "for a good cause; ask for recruitment into support circles; list non-disappearing links with options of different ways to donate to the ADA; "pledge to end" diabetes; attend an ADA seminar "session;" sign up for "latest news ...and opportunities to support the American Diabetes Association;" chances to buy or renew a subscription to the ADA’s magazine; and a section allowing you to "shop to stop diabetes." The bottom panel is the clearest section of the entry page. It has four logos, all to assure you that passing your credit card number to the ADA online is perfectly safe.
Other than a couple pleas for money that talk about "an end" to diabetes, there is no reference to a cure or a search for one.
Hoping to find some type of research meant to cure diabetes rather than ways to manage it (alwaysto the benefit of the pharmaceutical companies,) I clicked on "Research Discoveries." A pop up bleep, but my computer blocked the ad/unsafe element without telling me what the ADA wanted me to buy or give next. That page is another eye-unfriendly jumble of content. A link list stays in place on the left, offering "research advances" and "research merit" and another opportunity to ADA magazines. I was kind of surprised to learn that PDF versions were linked, but did not follow the links to see if the PDF’s were free.
The ADA "researchers continue to make significant contributions to the care and treatment of diabetes and its complications" but "bring hope of a cure for tomorrow" rather than "research" such a cure.
The "Recent Advances" header link entices "Learn about exciting recent advances attributable to American Diabetes Association-funded researchers." One of two things explains why I could find no mention of the most promising development towards a cure (1) I’m blind and the general layout of the site made it hard for me to find or (2) the American Diabetes Association does not discuss breakthroughs developed in non-capitalist, non-pharmaceutical dominated countries like England and Canada.
I suspect the latter.
The site name indicates that the ADA "owns" diabetes. Technically with the way domain names are managed, they do, at least on the .org level. The dot-com version is owned by Health Coach. The irony is that the ADA’s "org" site comes across as a lot more commercial.
"Donate" is more prominent on the main navigation bar than "News and Research" is. The prominent upper left directly below the navigation bar has changing content that confuses us who have visual impairment. The other images in the spot sell a book; beg for donations; advertise for a meal planning site; and entice browsers to be the first to raise $1,000 online in order to receive a free necklace. Th four advertising spots cycle endlessly.
Other elements of the site sell tote bags "for a good cause; ask for recruitment into support circles; list non-disappearing links with options of different ways to donate to the ADA; "pledge to end" diabetes; attend an ADA seminar "session;" sign up for "latest news ...and opportunities to support the American Diabetes Association;" chances to buy or renew a subscription to the ADA’s magazine; and a section allowing you to "shop to stop diabetes." The bottom panel is the clearest section of the entry page. It has four logos, all to assure you that passing your credit card number to the ADA online is perfectly safe.
Other than a couple pleas for money that talk about "an end" to diabetes, there is no reference to a cure or a search for one.
Hoping to find some type of research meant to cure diabetes rather than ways to manage it (alwaysto the benefit of the pharmaceutical companies,) I clicked on "Research Discoveries." A pop up bleep, but my computer blocked the ad/unsafe element without telling me what the ADA wanted me to buy or give next. That page is another eye-unfriendly jumble of content. A link list stays in place on the left, offering "research advances" and "research merit" and another opportunity to ADA magazines. I was kind of surprised to learn that PDF versions were linked, but did not follow the links to see if the PDF’s were free.
The ADA "researchers continue to make significant contributions to the care and treatment of diabetes and its complications" but "bring hope of a cure for tomorrow" rather than "research" such a cure.
The "Recent Advances" header link entices "Learn about exciting recent advances attributable to American Diabetes Association-funded researchers." One of two things explains why I could find no mention of the most promising development towards a cure (1) I’m blind and the general layout of the site made it hard for me to find or (2) the American Diabetes Association does not discuss breakthroughs developed in non-capitalist, non-pharmaceutical dominated countries like England and Canada.
I suspect the latter.
Monday, August 6, 2012
Diabetes Development
Based on a site inspection in late July, 2012, I express my usual opinion of the diabetes industry. The site I looked over was the main site of the American Diabetes Association, http://www.diabetes.org/
I write this without clicking on any links to more involved or in depth stories. This isn’t laziness. I am legally blind, and even triple-magnified onscreen reading is usually more difficult than it’s worth. I will fact check or seek specific information, but general browsing is just too difficult.
And that difficulty is the first observation of the ADA site. Diabetes is the leading case of blindness. Therefore a diabetes site should be in large print and as easy to navigate as possible. It should not contain multiple columns and smatterings of design elements that scatter attention. The page does not follow in an easy to follow pattern. I need a magnifying mouse; I cannot see an entire page all at once in any detail. The combination of horizontal and columned elements makes it tough for me to tell what goes together without clicking on the magnifier and examining each element separately.
I thought, to their credit, that they do not use "hover-activated" or "floating" hyperlink menus. Those are next to impossible for me to catch in the magnification. I was wrong; the pop up menus actually appear too far down for me to see with the magnifying box. The first link under the first nav-bar link is a list of links that begins with the pharmaceutical company-created condition called "pre-diabetes."
The page contains at least three different navigation bars in different locations. This does not make things easy to find.
I do have training and professional experience in electronic and print publishing including layout and design, so I am not issuing empty criticism. This blog contains more thought to deign elements geared to my "expected audience" than would be readily apparent to casual observers or home-taught developers. This is "Blindsided!" and is of natural interest to other people with visual impairments. The type is large. The white on black reduces glare. The main content is arrange vertically and appears in full on zoom-magnified screens with links and extras off to the right. This positioning decreases the chance that the readers need to scroll right to see all of the main content panel at once. Other elements do not interrupt the main flow of information. I have yet to use any pictures. These aren’t of high value to blind folk and can fluster programs that do the reading.
Some of the ADA’s site’s pictures change, which is jarring to people who can’t quite see what’s happening and if the change was a rollover effect or just something that happens. The hover menu I first hit appeared over the rotating images, which as why I first thought the ste did not use hovering menus.
The navigation bar extends past the edge of the screen on my usual 150% magnification. A more casual look would have led me to miss the link for "research." Maybe I am being presumptuous, but I think that research and other details are more important than some of the links that appear more prominently. This of course leads me to a brief analysis of content, but to keep things in blog-friendly length, that can of worms will be opened next time.
I write this without clicking on any links to more involved or in depth stories. This isn’t laziness. I am legally blind, and even triple-magnified onscreen reading is usually more difficult than it’s worth. I will fact check or seek specific information, but general browsing is just too difficult.
And that difficulty is the first observation of the ADA site. Diabetes is the leading case of blindness. Therefore a diabetes site should be in large print and as easy to navigate as possible. It should not contain multiple columns and smatterings of design elements that scatter attention. The page does not follow in an easy to follow pattern. I need a magnifying mouse; I cannot see an entire page all at once in any detail. The combination of horizontal and columned elements makes it tough for me to tell what goes together without clicking on the magnifier and examining each element separately.
I thought, to their credit, that they do not use "hover-activated" or "floating" hyperlink menus. Those are next to impossible for me to catch in the magnification. I was wrong; the pop up menus actually appear too far down for me to see with the magnifying box. The first link under the first nav-bar link is a list of links that begins with the pharmaceutical company-created condition called "pre-diabetes."
The page contains at least three different navigation bars in different locations. This does not make things easy to find.
I do have training and professional experience in electronic and print publishing including layout and design, so I am not issuing empty criticism. This blog contains more thought to deign elements geared to my "expected audience" than would be readily apparent to casual observers or home-taught developers. This is "Blindsided!" and is of natural interest to other people with visual impairments. The type is large. The white on black reduces glare. The main content is arrange vertically and appears in full on zoom-magnified screens with links and extras off to the right. This positioning decreases the chance that the readers need to scroll right to see all of the main content panel at once. Other elements do not interrupt the main flow of information. I have yet to use any pictures. These aren’t of high value to blind folk and can fluster programs that do the reading.
Some of the ADA’s site’s pictures change, which is jarring to people who can’t quite see what’s happening and if the change was a rollover effect or just something that happens. The hover menu I first hit appeared over the rotating images, which as why I first thought the ste did not use hovering menus.
The navigation bar extends past the edge of the screen on my usual 150% magnification. A more casual look would have led me to miss the link for "research." Maybe I am being presumptuous, but I think that research and other details are more important than some of the links that appear more prominently. This of course leads me to a brief analysis of content, but to keep things in blog-friendly length, that can of worms will be opened next time.
Monday, June 18, 2012
Feedback 3
When recounting my experiences of recent hospitalization, I usually referred to the caregivers as "nurse types." In discussing this, it was pointed out to e that you really can’t tell who is what in a hospital anymore. The days of nurses in specific and distinct uniforms are a thing of a bygone era. Now, everyone that works at the hospital seems to wear scrubs. Employers try to assign job titles to make even the lowest-on-the-pole peons feels important, to the confusion of a public who really doesn’t know just how much training, education or qualifications a "certified" nursing assistant does or does not have. Are these people anything more than an old style after-school candy striper? How do we know that it’s not a janitor changing our IV?
I’ve gotten lazy in one aspect of the blog writing, and feel the need for apologizing for that. I run a spell check, but proofreading is a lot more on my eye and drains a lot, so I tend to skip that for blog posts in a way I never would for anything I would write to send to an editor. "Our" and "out" may be confused. The mechanical spell-checker won’t flag this, and the grammar checker chastises my general style more than it finds actual errors. And I have a hard time seeing the difference so might often miss it anyway. While a spell-checker does not know the difference between public service and pubic service, human readers do. Eye hop ewe cam four give an E weigh this us dis tracking fir ewe.
Anyone who might feel as though I mentioned the misplaced portable urinal bottle too many times should invite me to dinner. You must pick me up and bring me home. I will bring a bottle and set it on the table in front of your other guests and we will see just how much of an issue other people find piss bottles on the eating table. Restaurants have been closed down for far less.
The blog has spread from being a blind man’s bluff to a broader medical things. I am relating subjective experiences. I’m smart enough to have been one with more interest and educational opportunities, but I am not a doctor and do not aim to be giving medical advice. My goal is more important, to share on a consumer awareness level that it is important for patients as the consumers of health care to know what they are getting by questioning their doctors. Diabetes is a profitable niche in the healthcare market. People should do their own research. If three years ago someone had told me "always include ‘side effect’ in any procedure or medicine you Google" I probably would not be so blind today.
I’ve gotten lazy in one aspect of the blog writing, and feel the need for apologizing for that. I run a spell check, but proofreading is a lot more on my eye and drains a lot, so I tend to skip that for blog posts in a way I never would for anything I would write to send to an editor. "Our" and "out" may be confused. The mechanical spell-checker won’t flag this, and the grammar checker chastises my general style more than it finds actual errors. And I have a hard time seeing the difference so might often miss it anyway. While a spell-checker does not know the difference between public service and pubic service, human readers do. Eye hop ewe cam four give an E weigh this us dis tracking fir ewe.
Anyone who might feel as though I mentioned the misplaced portable urinal bottle too many times should invite me to dinner. You must pick me up and bring me home. I will bring a bottle and set it on the table in front of your other guests and we will see just how much of an issue other people find piss bottles on the eating table. Restaurants have been closed down for far less.
The blog has spread from being a blind man’s bluff to a broader medical things. I am relating subjective experiences. I’m smart enough to have been one with more interest and educational opportunities, but I am not a doctor and do not aim to be giving medical advice. My goal is more important, to share on a consumer awareness level that it is important for patients as the consumers of health care to know what they are getting by questioning their doctors. Diabetes is a profitable niche in the healthcare market. People should do their own research. If three years ago someone had told me "always include ‘side effect’ in any procedure or medicine you Google" I probably would not be so blind today.
Friday, May 4, 2012
The Round-up
A major intent of this blog from, the beginning was to share information in the hopes of helping other people avoid some of my mishaps.
The key piece of information that cannot bear repeating enough is that boner pills such as Levitra, Viagra, and Cialis can cause permanent blindness.
The way this blog has been searched and found indicates that my experiences over the last few years almost places an obligation on me to give a less detailed but more thorough review of retina specialists in Rhode Island and New England and eye doctors who practice retina specialties.
My last post hailed Magdalena G. Krzystolik and I can recommend no one above her. Reasons include technical ability, integrity, honest communication with the patient and the fact that she demonstrated more interest in me as a patient than in patient payment. While educated here in the U.S., she was born in Europe and seems to lack American capitalist priority.
The other absolute positive referral should also be listed fist: Heinrich Krosschell. He is not a specialist but a general eye doctor. He himself knows this limit. He can give you general views by his experience but will not hesitate to tell you when a problem is beyond his scope. This honesty over both ego and profiteering earns him a lot of my esteem.
I saw two doctors with Koch Eye Associates. I recommend neither, nor the practice. Michael Negrey gained some points for looking into what could have been a thyroid problem, which others might criticize as unnecessary testing. He loses all regard however, because he has such a God Complex over his patients that he failed to communicate to me about most aspects of the cataract surgery. If I had been given the option of a lense that would have allowed close up vision, I would have a higher quality of life these days. Negrey made those decisions for me without consultation. He also utterly failed to inform me that the cataract procedure posed risk of triggering retinapathy. He failed to inform me of this despite knowing that one of his associates, Dr Michael O’Brien, was performing PRP laser treatments on me in the same time frame. Dr. O’Brien also did not inform me of the serious risk factors of the procedure he performed, including the fact that the procedure is almost guaranteed to cause at least some level of what it is supposed to prevent. O’Brien’s bedside manner was wonderful, but evoked the warnings of smiling at crocodiles. He scared me into the PRP due to the Cialis induced vitreous hemorrhage, despite being told that other retina specialists had willingly forestalled any such treatment after havin done multiple examinations of my eye. He seemed to care only about being a productive employee to Koch’s billing department.
Dr. Harold Woodcomb was one of the retina specialists who thought is safe to wait rather than rushing me into PRP laser. I saw him for a period of years and defected only when disillusioned by his failure to even consider the (documented) possibility that Cialis caused the vitreous hemorrhage. In hindsight, I probably should have stayed under his care rather than roving to people and practices that did more harm than good.
I had been seen once by a Dr. Smiley in Woodcomb’s Providence office. He attempted scare tactics to roll me into immediate PRP surgery. I can find little direct information about him as he seems to have disappeared. He no longer seems affiliated with Woodcomb’s practice and may be the Dr. Smiley working in California, but I am not sure of that.
I submitted to treatment a the Joslin Eye Center in Boston. They charge a lot of money, but no aspect of the care itself seemed to warrant their reputation as "best in the world." Dr. Deborah K. Schlossman barely examined me but added notes to my file that claimed to have informed me about things she never mentioned. Dr. Paul Arrigg seemed much better, but he strung me along for months with plans for procedures that it turned out he had no realistic intention of ever doing. In those months, the retinapathy worsened. If I had the reattachment done sooner, the outcome probably would have been better.
Prior to the hemorrhage, I had trusted my routine specialist care to John Loewenstein at Massachusetts Eye and Ear Infirmary. I sought treatment there also under gullibility of world class reputation and ceased treatment after learning that I had other developing conditions in the eye that Dr. Lowenstein could not have been bothered to indicate to even the slightest degree.
I saw Dr. Arthur Geltzer in Providence in 1998. He was one of many doctors who used the "I do this surgery now or you will be blind in six months" scare tactics to get my money. With the experience of the past few years, I believe more than ever that if I had done the surgery then, I would have been blind in six months and then been told that I waited too long to have the surgery.
Patients need to run from any doctor who uses scare tactics, particularly the six month line.
A search through the blog will lead to more details about my experiences with most of the docs and quacks on the list.
The key piece of information that cannot bear repeating enough is that boner pills such as Levitra, Viagra, and Cialis can cause permanent blindness.
The way this blog has been searched and found indicates that my experiences over the last few years almost places an obligation on me to give a less detailed but more thorough review of retina specialists in Rhode Island and New England and eye doctors who practice retina specialties.
My last post hailed Magdalena G. Krzystolik and I can recommend no one above her. Reasons include technical ability, integrity, honest communication with the patient and the fact that she demonstrated more interest in me as a patient than in patient payment. While educated here in the U.S., she was born in Europe and seems to lack American capitalist priority.
The other absolute positive referral should also be listed fist: Heinrich Krosschell. He is not a specialist but a general eye doctor. He himself knows this limit. He can give you general views by his experience but will not hesitate to tell you when a problem is beyond his scope. This honesty over both ego and profiteering earns him a lot of my esteem.
I saw two doctors with Koch Eye Associates. I recommend neither, nor the practice. Michael Negrey gained some points for looking into what could have been a thyroid problem, which others might criticize as unnecessary testing. He loses all regard however, because he has such a God Complex over his patients that he failed to communicate to me about most aspects of the cataract surgery. If I had been given the option of a lense that would have allowed close up vision, I would have a higher quality of life these days. Negrey made those decisions for me without consultation. He also utterly failed to inform me that the cataract procedure posed risk of triggering retinapathy. He failed to inform me of this despite knowing that one of his associates, Dr Michael O’Brien, was performing PRP laser treatments on me in the same time frame. Dr. O’Brien also did not inform me of the serious risk factors of the procedure he performed, including the fact that the procedure is almost guaranteed to cause at least some level of what it is supposed to prevent. O’Brien’s bedside manner was wonderful, but evoked the warnings of smiling at crocodiles. He scared me into the PRP due to the Cialis induced vitreous hemorrhage, despite being told that other retina specialists had willingly forestalled any such treatment after havin done multiple examinations of my eye. He seemed to care only about being a productive employee to Koch’s billing department.
Dr. Harold Woodcomb was one of the retina specialists who thought is safe to wait rather than rushing me into PRP laser. I saw him for a period of years and defected only when disillusioned by his failure to even consider the (documented) possibility that Cialis caused the vitreous hemorrhage. In hindsight, I probably should have stayed under his care rather than roving to people and practices that did more harm than good.
I had been seen once by a Dr. Smiley in Woodcomb’s Providence office. He attempted scare tactics to roll me into immediate PRP surgery. I can find little direct information about him as he seems to have disappeared. He no longer seems affiliated with Woodcomb’s practice and may be the Dr. Smiley working in California, but I am not sure of that.
I submitted to treatment a the Joslin Eye Center in Boston. They charge a lot of money, but no aspect of the care itself seemed to warrant their reputation as "best in the world." Dr. Deborah K. Schlossman barely examined me but added notes to my file that claimed to have informed me about things she never mentioned. Dr. Paul Arrigg seemed much better, but he strung me along for months with plans for procedures that it turned out he had no realistic intention of ever doing. In those months, the retinapathy worsened. If I had the reattachment done sooner, the outcome probably would have been better.
Prior to the hemorrhage, I had trusted my routine specialist care to John Loewenstein at Massachusetts Eye and Ear Infirmary. I sought treatment there also under gullibility of world class reputation and ceased treatment after learning that I had other developing conditions in the eye that Dr. Lowenstein could not have been bothered to indicate to even the slightest degree.
I saw Dr. Arthur Geltzer in Providence in 1998. He was one of many doctors who used the "I do this surgery now or you will be blind in six months" scare tactics to get my money. With the experience of the past few years, I believe more than ever that if I had done the surgery then, I would have been blind in six months and then been told that I waited too long to have the surgery.
Patients need to run from any doctor who uses scare tactics, particularly the six month line.
A search through the blog will lead to more details about my experiences with most of the docs and quacks on the list.
Monday, April 30, 2012
Recommended Retina
The retina reattachment surgery in January had been performed by Magdalena G. Krzystolik of Southern New England Retina Associates
I heard of her from a former tenant, one who had undergone a successful procedure and spoke highly of this doctor. One medical professional I consulted knew her; he stated that her technical ability was outstanding but that her bedside manner not always so commendable.
I will always choose a competent and communicative doctor over a "nice" doctor.
My sense has been more that Dr. Krzystolik "has her moods." In addition to the surgery, I have had perhaps eight other appointments with her. She can be terse and unfriendly. But when my appointments coincided with her more "sociable moods," she really hit it out of the park with apparent comprehension of some of the less direct impacts of what has been happening to me.
A doctor with good bedside manner may maintain that reputation by giving no bad news or realistically grim possibilities in the outcome. Dr Krzystolik remained clear and honest with me about good and bad possibilities. I find honesty more important than friendly smiles and cheery optimism that may not even approach the border of realistic.
I commend and do recommend Dr. Krzystolik despite the fact that the retina reattachment surgery has not seen the success either she or I had hoped for. By the time I got to Dr. Krzystolik , the damage activated by Dr O’Brien’s PRP laser had progressed too far and for too long, thanks in large part to the indecisive delays by Dr. Arrigg at Joslin Center.
Blog readers know I am not afraid to point fingers or name names when it comes to the doctors whose offices I have passed through. Yet even while being direct, blunt, and sometimes angry, I have striven for truth and a level of fairness. I bring up Arrigg and Michael O’Brien specifically in this post to give any new google search reader of this post an idea of some balance in my opinion. Anyone searching for a retina specialist in Rhode Island and southern New England should be considering Dr. Krzystolik and her practice. No doctor may be able to deliver the desired results; at least Dr. Krzystolik has the integrity to deliver realistic expectations instead of hopeful but ultimately empty promises.
I heard of her from a former tenant, one who had undergone a successful procedure and spoke highly of this doctor. One medical professional I consulted knew her; he stated that her technical ability was outstanding but that her bedside manner not always so commendable.
I will always choose a competent and communicative doctor over a "nice" doctor.
My sense has been more that Dr. Krzystolik "has her moods." In addition to the surgery, I have had perhaps eight other appointments with her. She can be terse and unfriendly. But when my appointments coincided with her more "sociable moods," she really hit it out of the park with apparent comprehension of some of the less direct impacts of what has been happening to me.
A doctor with good bedside manner may maintain that reputation by giving no bad news or realistically grim possibilities in the outcome. Dr Krzystolik remained clear and honest with me about good and bad possibilities. I find honesty more important than friendly smiles and cheery optimism that may not even approach the border of realistic.
I commend and do recommend Dr. Krzystolik despite the fact that the retina reattachment surgery has not seen the success either she or I had hoped for. By the time I got to Dr. Krzystolik , the damage activated by Dr O’Brien’s PRP laser had progressed too far and for too long, thanks in large part to the indecisive delays by Dr. Arrigg at Joslin Center.
Blog readers know I am not afraid to point fingers or name names when it comes to the doctors whose offices I have passed through. Yet even while being direct, blunt, and sometimes angry, I have striven for truth and a level of fairness. I bring up Arrigg and Michael O’Brien specifically in this post to give any new google search reader of this post an idea of some balance in my opinion. Anyone searching for a retina specialist in Rhode Island and southern New England should be considering Dr. Krzystolik and her practice. No doctor may be able to deliver the desired results; at least Dr. Krzystolik has the integrity to deliver realistic expectations instead of hopeful but ultimately empty promises.
Tuesday, April 17, 2012
As Seen on TV
A friend told me he had seen an ad or feature on local TV for Koch Eye Associates. Dr. Koch himself appeared with a young female lawyer who had already had twenty-two sessions of PRP (Pan retinal photocoagulation). I had a total of six sessions.
I did not see (or hear) the TV spot myself, but what little I was told about it raises questions I find frightening on one level or another.
The mercenary question: how many rounds of global coverage did the patient pay for?
Did the patient have any visual signs of problems with her eyes before they started firing the lasers? How much of the follow up sessions were necessitated solely by the initial sessions?
Was the patient a self abusive diabetic who brought her medical ills on herself, or did she simply get scared into the claims of a doctor that she would be blind in six months without the surgery? I had been told that line several times in the decades before I got scared into the procedure by the vitreous hemorrhage.
I am aware that elements of my readership and circle of friends think I simply point fingers when it comes to my medical travails. I accept that. The opinions I have formed through experience do tend to buck the system of medical authority. I can go only by my own experience, which includes too much "coincidental" timing of things going wrong after doctors or their drugs tampered with imperfect but stable situations.
The vitreous hemorrhage would have healed with time. My handicap two and a half years later is unrelated to the blood burst. I saw marked decline in my vision immediately after the third PRP laser session. I cannot read or see close up details because Koch Associate Dr Michael Negrey possesses too much of a God Complex to even had told me that different lense options were available. Today, I cannot see far away because of the retinapathy, and I cannot see close up because the artificial lense in my eye is not meant to allow close up vision.
If a patient already had perceptible vision loss, due to retinapathy, I do not advise waiting for the procedure. Experience indicates to me that even retinal reattachment surgery is better done soon than later once the problem escalates.
My warning is for people who might undergo PRP based on a doctor’s say-so, particularly if the doctor uses the scare tactic that you will be blind in six months without his godly intervention.
I did not see (or hear) the TV spot myself, but what little I was told about it raises questions I find frightening on one level or another.
The mercenary question: how many rounds of global coverage did the patient pay for?
Did the patient have any visual signs of problems with her eyes before they started firing the lasers? How much of the follow up sessions were necessitated solely by the initial sessions?
Was the patient a self abusive diabetic who brought her medical ills on herself, or did she simply get scared into the claims of a doctor that she would be blind in six months without the surgery? I had been told that line several times in the decades before I got scared into the procedure by the vitreous hemorrhage.
I am aware that elements of my readership and circle of friends think I simply point fingers when it comes to my medical travails. I accept that. The opinions I have formed through experience do tend to buck the system of medical authority. I can go only by my own experience, which includes too much "coincidental" timing of things going wrong after doctors or their drugs tampered with imperfect but stable situations.
The vitreous hemorrhage would have healed with time. My handicap two and a half years later is unrelated to the blood burst. I saw marked decline in my vision immediately after the third PRP laser session. I cannot read or see close up details because Koch Associate Dr Michael Negrey possesses too much of a God Complex to even had told me that different lense options were available. Today, I cannot see far away because of the retinapathy, and I cannot see close up because the artificial lense in my eye is not meant to allow close up vision.
If a patient already had perceptible vision loss, due to retinapathy, I do not advise waiting for the procedure. Experience indicates to me that even retinal reattachment surgery is better done soon than later once the problem escalates.
My warning is for people who might undergo PRP based on a doctor’s say-so, particularly if the doctor uses the scare tactic that you will be blind in six months without his godly intervention.
Thursday, April 5, 2012
Perseverance
The decline in eyesight this academic year fell fast. The Charcot foot diminished me more, and neither thing will ever be fully healed. I’m coming to terms with that, bit by bit. Instead of being a blind guy who walks with arms extended before me to catch a fall or buffer a bump, I also typically drag one leg a bit. I imagine I look like the staple lab assistant of horror movies.
The lack of posts over the past month has not been a lack of interest ion the blog, but dwindled ability. Everything I do takes more out of me than it should, and other responsibilities absorb time that always seems overly extended. Anything also had the potential of frustrating me to temporary retreat from trying to do things for myself.
Computer use has diminished since the January reattachment procedure. Eyestrain comes quickly; headaches usually follow. Proofreading is more difficult than ever. I can’t really see whole words as cohesive units. The serifs of "r" and "t" make the letters close twins to me, and I have great difficulty finding an "I" that inserted itself via typo when striking an "o" or "u."
I still strive for an active life, but find it prudent and ultimately more responsible to reduce commitments. I wrote out notice to my bowling league to solicit replacement for myself as league secretary for next season. Earlier this year I resigned from the community board I had served on for a number of years. I took pride and satisfaction in those things and other activities that lent social outlet to someone who worked alone rather than in group settings for the past ten-plus years.
I’m hoping that in doing less I will ultimately be able to do more, including things back burnered for far too long.
The lack of posts over the past month has not been a lack of interest ion the blog, but dwindled ability. Everything I do takes more out of me than it should, and other responsibilities absorb time that always seems overly extended. Anything also had the potential of frustrating me to temporary retreat from trying to do things for myself.
Computer use has diminished since the January reattachment procedure. Eyestrain comes quickly; headaches usually follow. Proofreading is more difficult than ever. I can’t really see whole words as cohesive units. The serifs of "r" and "t" make the letters close twins to me, and I have great difficulty finding an "I" that inserted itself via typo when striking an "o" or "u."
I still strive for an active life, but find it prudent and ultimately more responsible to reduce commitments. I wrote out notice to my bowling league to solicit replacement for myself as league secretary for next season. Earlier this year I resigned from the community board I had served on for a number of years. I took pride and satisfaction in those things and other activities that lent social outlet to someone who worked alone rather than in group settings for the past ten-plus years.
I’m hoping that in doing less I will ultimately be able to do more, including things back burnered for far too long.
Saturday, February 4, 2012
With Nothing Left to Lose
Process and paperwork with the hospital helped delay the time between the December 14 setback and the reattachment surgery. As was or will be confessed elsewhere, I also lied about the surgery date or that I was having surgery at all.
The friend who raised the question of timing quoted his independent research that says retina reattachment surgery should be done within 24 hour after sudden retina separation. That is true, but doesn’t hold the same for diabetic retinapathy, which is a gradual rather than a sudden release of the retina from the back of the eye and/pr from the brain.
The diabetic malady is gradual. By Fall 2011 I knew things were going fast, even if I could not know for certain how much of the loss was retinapathy and how much rooted from all the other problems in my beleaguered eyes.
And let’s be real: my retina started separation after the third PRP session in January 2010, judging by the flashers. Can I blame this doctor for a one-month delay when those at Joslin let my condition further deteriorate for over a year while they strung me along with other "preparation fir the worst surgeries" that they had no real intention of doing?
I blame Joslin on an emotional level, but not on my cold logical rational patterns of thinking. No one wanted to do surgery on someone’s only functioning eye until there was absolutely nothing else to lose.
When my current doctor agreed to the surgery, she and I were in perfect agreement that I had reached that point. To her credit, she still made me seek a second opinion.
The rush to retinapathy reattachment is that once separated, the retina begins to harden. Once this happens, it no longer has the flexibility to be reattached as completely, or at all.
This is being written on 21 December 2011, a month before the surgery that could restore me to passable functionality or take it all away. If this is being read on the blog, either all went well enough for me to still navigate the computer, someone is helping me settle the affairs of this blog, or someone found and posted it posthumously. (Note 2/4/12: I am just barely able to do this myself.) Yeah, I’m fatalistic like that. While the doctor was realistic about the risks, I sensed true optimism from her. Chances are, all went well.
The friend who raised the question of timing quoted his independent research that says retina reattachment surgery should be done within 24 hour after sudden retina separation. That is true, but doesn’t hold the same for diabetic retinapathy, which is a gradual rather than a sudden release of the retina from the back of the eye and/pr from the brain.
The diabetic malady is gradual. By Fall 2011 I knew things were going fast, even if I could not know for certain how much of the loss was retinapathy and how much rooted from all the other problems in my beleaguered eyes.
And let’s be real: my retina started separation after the third PRP session in January 2010, judging by the flashers. Can I blame this doctor for a one-month delay when those at Joslin let my condition further deteriorate for over a year while they strung me along with other "preparation fir the worst surgeries" that they had no real intention of doing?
I blame Joslin on an emotional level, but not on my cold logical rational patterns of thinking. No one wanted to do surgery on someone’s only functioning eye until there was absolutely nothing else to lose.
When my current doctor agreed to the surgery, she and I were in perfect agreement that I had reached that point. To her credit, she still made me seek a second opinion.
The rush to retinapathy reattachment is that once separated, the retina begins to harden. Once this happens, it no longer has the flexibility to be reattached as completely, or at all.
This is being written on 21 December 2011, a month before the surgery that could restore me to passable functionality or take it all away. If this is being read on the blog, either all went well enough for me to still navigate the computer, someone is helping me settle the affairs of this blog, or someone found and posted it posthumously. (Note 2/4/12: I am just barely able to do this myself.) Yeah, I’m fatalistic like that. While the doctor was realistic about the risks, I sensed true optimism from her. Chances are, all went well.
Thursday, February 2, 2012
Off the Grid and off the Leash
I’m back!
The absence here and in other parts of my life for the past while was to cover the fact that I had surgery for retina reattachment and vitreous gel replacement and possibly more on January 19. I can’t tell you how it went right now because this blog post, along with two others, are being written on 21 December.
I shared details of the impending surgery with very few people. Many of those who knew of the surgery heard lies about when it was. My intention at this point is to tell as few people as possible that I will even be having it. Look back on those mid-December posts and you’ll know I was not in a good frame of mind. Too many life events colluded to make my self control and self sufficiency issues explode. Perhaps my intention to conceal the surgery contained some level of spite towards people who really stressed me out about control issues; sometimes my subconscious does work that way, unfortunately. But on the conscious levels, I didn’t want to hear the input of people who care and/or control. There’s risk to the surgery. It’s all or nothing: it will/did either improve things, provide hope for "permanent" stabilization of how things are now, or make things go totally black.
To share information in advance on the surgery seems like it would foster concern and worry for those who do truly care for me. None of them will be able to control a thing about the surgery, so why foster needless worry?
I do not need to share this burden. Part of my reaction to December’s overload of stresses was that I was facing what could be my final stand. I had been strong and self sufficient my adult life and choose to face this high risk in that mode of operation. I am a tough little bastard who can and dud face this on my own.
The time of my planed absence from the blog and other areas has given me time to reflect on the experiences and time to prepare further posts. I’ll start revealing the experience after a few days, when a few further pre-op posts have been published.
In the meantime, if you are one of those who wants to be planting a boot in my ass for the "sudden disappearance," take a number and get in line.
The absence here and in other parts of my life for the past while was to cover the fact that I had surgery for retina reattachment and vitreous gel replacement and possibly more on January 19. I can’t tell you how it went right now because this blog post, along with two others, are being written on 21 December.
I shared details of the impending surgery with very few people. Many of those who knew of the surgery heard lies about when it was. My intention at this point is to tell as few people as possible that I will even be having it. Look back on those mid-December posts and you’ll know I was not in a good frame of mind. Too many life events colluded to make my self control and self sufficiency issues explode. Perhaps my intention to conceal the surgery contained some level of spite towards people who really stressed me out about control issues; sometimes my subconscious does work that way, unfortunately. But on the conscious levels, I didn’t want to hear the input of people who care and/or control. There’s risk to the surgery. It’s all or nothing: it will/did either improve things, provide hope for "permanent" stabilization of how things are now, or make things go totally black.
To share information in advance on the surgery seems like it would foster concern and worry for those who do truly care for me. None of them will be able to control a thing about the surgery, so why foster needless worry?
I do not need to share this burden. Part of my reaction to December’s overload of stresses was that I was facing what could be my final stand. I had been strong and self sufficient my adult life and choose to face this high risk in that mode of operation. I am a tough little bastard who can and dud face this on my own.
The time of my planed absence from the blog and other areas has given me time to reflect on the experiences and time to prepare further posts. I’ll start revealing the experience after a few days, when a few further pre-op posts have been published.
In the meantime, if you are one of those who wants to be planting a boot in my ass for the "sudden disappearance," take a number and get in line.
Wednesday, January 18, 2012
Brains, Heart, Balls, and...
I enter a room and I can’t quite tell who is in it.
When I arrive at bowling, I pre-check what my lane assignment is; I can’t trust my vision otherwise to know that I am plunking my butt down next to my teammates instead of people with the same general silhouette.
If my roommate leaves the room without a sound, I end up talking to myself during the next commercial because I don’t know he’s no longer there.
I can no longer read. Even when I can align proper magnification and illumination, there’s a blank spot in my central vision that disenables me from putting all the letters together into a coherent word. I write this blog on type size even larger than the blog’s visually-handicapped- friendly presentation. I still need the magnifying mouse and I get stymied by things like an extra "r" in a "worrd" or the typo of an "m" for an "n" because I can’t make out which is there.
Everything takes longer. I’ve been paring my life down just to the things that are worth it.
I don’t think things should ave gotten this bad. I don’t think the retinapathy would have happened if not for the PRP treatment; there are no alternate worlds to explore the un-taken roads in time to know for sure. The Arrigg-ant doctors at Joslin strung me along for more than a year when they had no intention of doing surgery that could make me dark-blind or bring permanent pain to the eye at equal risks to the prevention of further loss or improvement. I’ve been known to take spectacular risks at times, always with a thought out risk-benefit analysis. I’ve had burning failures and amazing successes. I have a combination of brains, heart, balls and an ass that can take a kicking and still not give a shit. After learning the hard way via risks and side effects of PRP procedures and cataract surgery that the doctors neglected to mention, I learned to look up the risks for myself. I’ve been ready, willing and eager for the risky treatments since the first setback.
I’ve lived by Dennis DeYoung’s words since I was 17: "I’ll take the heat for all the chances I’m gonna take, mistakes that I make. Wait and see, you’re gonna hear from me."
I’m willing to take the chances that most doctors are not. Is that understandable? It’s their medical malpractice premiums versus my quality of life, my life itself.
This is harder than it has to be.
Something needs to be done.
Soon.
When I arrive at bowling, I pre-check what my lane assignment is; I can’t trust my vision otherwise to know that I am plunking my butt down next to my teammates instead of people with the same general silhouette.
If my roommate leaves the room without a sound, I end up talking to myself during the next commercial because I don’t know he’s no longer there.
I can no longer read. Even when I can align proper magnification and illumination, there’s a blank spot in my central vision that disenables me from putting all the letters together into a coherent word. I write this blog on type size even larger than the blog’s visually-handicapped- friendly presentation. I still need the magnifying mouse and I get stymied by things like an extra "r" in a "worrd" or the typo of an "m" for an "n" because I can’t make out which is there.
Everything takes longer. I’ve been paring my life down just to the things that are worth it.
I don’t think things should ave gotten this bad. I don’t think the retinapathy would have happened if not for the PRP treatment; there are no alternate worlds to explore the un-taken roads in time to know for sure. The Arrigg-ant doctors at Joslin strung me along for more than a year when they had no intention of doing surgery that could make me dark-blind or bring permanent pain to the eye at equal risks to the prevention of further loss or improvement. I’ve been known to take spectacular risks at times, always with a thought out risk-benefit analysis. I’ve had burning failures and amazing successes. I have a combination of brains, heart, balls and an ass that can take a kicking and still not give a shit. After learning the hard way via risks and side effects of PRP procedures and cataract surgery that the doctors neglected to mention, I learned to look up the risks for myself. I’ve been ready, willing and eager for the risky treatments since the first setback.
I’ve lived by Dennis DeYoung’s words since I was 17: "I’ll take the heat for all the chances I’m gonna take, mistakes that I make. Wait and see, you’re gonna hear from me."
I’m willing to take the chances that most doctors are not. Is that understandable? It’s their medical malpractice premiums versus my quality of life, my life itself.
This is harder than it has to be.
Something needs to be done.
Soon.
Sunday, January 8, 2012
What's in a Name?
Misnomers are the misnaming of things. Often, according to my using definition, it is a name or label that is close but not quite accurate.
I’ll start with my own misnomer itsy, from tha tag cloud on this blog’s internal links. I use the ter, "medical malpractice in a general sense, not as a legal definition. There’s just wrongness in not giving patients all the necessary information to make informed decisions, including risk factors. When I label a post "medical malpractice," I am not prepping for a lawsuit but am indicating a misuse of power or authority that doctors usually hold over patients. My using definition includes doctors who do not report potential side effects back to the pharmaceutical companies that send thedocs on vacations, or the government agencies that are supposed to regulate them. I doubt any doctor would ever get sued for that.
I don’t quite get the PRP laser name either. The "panretinal" raises no flags for me. "Photocoagulation" does. The photo part is OK in general terms, but I can’t grasp the "coagulation" part.
To coagulate is to thicken or to clot, which is not necessarily the problem in diabetic retinapathy. The blood does thicken with increased sugar content, but the exact nature of the problem is the formation of new, weaker cells on the retina that have higher risk of bursting because they are newer and weaker.
Doctors call the bleeding stage "proliferative" while "nonproliferative" is the growing stage for new vessels. To my cynical mindset, the medical profession has the terms reversed solely to confuse the patient. The proliferation of nuclear weapons is while more are being made and spread across the world, not the stage where they are being used to wipe land and people off the globe.
The next misnomer is a universal term that angers me every time I hear it: "Obama Care." My objection is not a political one to any side pro or con. My issue is with the media that dubbed the program this and has maintained it.
Medical care is when you go to a doctor or hospital when you are sick. This "care" plan does not even come close to providing that. The proper term is Obama Coverage. The "care" is for insurance by the same companies who want to deny claims and limit care if it is deemed too expensive. Why has no one caught on to that fact? If you get sick and hospitalized in a country with universal health care, you get treatment, not a percentage of bills paid while others are disputed and stuck to you.
The more Obama "Care" is discussed, the more we hear the term. The more we hear the term, the more we forget how inaccurate it is, which is the final objective of this intentional media lie.
We wouldn’t want commercial media advertisers to go out of business, would we?.
I’ll start with my own misnomer itsy, from tha tag cloud on this blog’s internal links. I use the ter, "medical malpractice in a general sense, not as a legal definition. There’s just wrongness in not giving patients all the necessary information to make informed decisions, including risk factors. When I label a post "medical malpractice," I am not prepping for a lawsuit but am indicating a misuse of power or authority that doctors usually hold over patients. My using definition includes doctors who do not report potential side effects back to the pharmaceutical companies that send thedocs on vacations, or the government agencies that are supposed to regulate them. I doubt any doctor would ever get sued for that.
I don’t quite get the PRP laser name either. The "panretinal" raises no flags for me. "Photocoagulation" does. The photo part is OK in general terms, but I can’t grasp the "coagulation" part.
To coagulate is to thicken or to clot, which is not necessarily the problem in diabetic retinapathy. The blood does thicken with increased sugar content, but the exact nature of the problem is the formation of new, weaker cells on the retina that have higher risk of bursting because they are newer and weaker.
Doctors call the bleeding stage "proliferative" while "nonproliferative" is the growing stage for new vessels. To my cynical mindset, the medical profession has the terms reversed solely to confuse the patient. The proliferation of nuclear weapons is while more are being made and spread across the world, not the stage where they are being used to wipe land and people off the globe.
The next misnomer is a universal term that angers me every time I hear it: "Obama Care." My objection is not a political one to any side pro or con. My issue is with the media that dubbed the program this and has maintained it.
Medical care is when you go to a doctor or hospital when you are sick. This "care" plan does not even come close to providing that. The proper term is Obama Coverage. The "care" is for insurance by the same companies who want to deny claims and limit care if it is deemed too expensive. Why has no one caught on to that fact? If you get sick and hospitalized in a country with universal health care, you get treatment, not a percentage of bills paid while others are disputed and stuck to you.
The more Obama "Care" is discussed, the more we hear the term. The more we hear the term, the more we forget how inaccurate it is, which is the final objective of this intentional media lie.
We wouldn’t want commercial media advertisers to go out of business, would we?.
Monday, December 19, 2011
The Latest Setback
There’s been time and distance to most of these blog entries. That’s made a candid telling easier for me. It feels less revealing because it’s old news for me. My brain tends to overthink; this can lead me to talking too much I’ve processed and settled things, even those with ramifications that are still ramming me.
I can be absolutely candid with some friends. Often, however, I find I get candid only about certain things with certain people and hold back other things.
Think of me as Woody Allen: I compartmentalize. If one area gets rough, I can always hop into another box until things calm in the first or I decide it’s time to close the box off for good. Maybe this is a sign of some undiagnosed paranoid schizophrenia. I’d read more to find out, but I can’t see to comfortably read anymore, and me reading that might turn into a hypochondriac reading medical journals.
Mentally I picture certain audiences when writing specific posts, like I am talking to specific people about specific things rather than an general audience that includes people I haven’t had much chance to talk to in too long, or complete strangers.
I am pretty candid in talking about my past doctors. I have not been afraid to name names because as long as I stick to the truth I cannot be sued for libel. But when it comes to current doctors, whether for the eye or my GP, I am treating them as I treat friends in the blog: they are rendered anonymous, male whether they are truly male, female or undetermined. That’s the respectful and polite thing. It also makes sure that I don’t piss off someone who is in control of a situation where I am anesthetized and could be hypnotized into wetting myself any time I hear the word "snowflake."
I talk about my difficulties in current things now because life has been hell since Thanksgiving and every compartment is on fire, it seems. Blindness has robbed me of a lot of self control and no less than five of the compartment fires all touch on other people’s control freak issues or my own self control/self sufficiency issues.
I expected the fourth setback in August, but I suffered no sudden appearance of a floater. That would be a good thing, but instead of a sudden onset, I have experienced a steady gradual fade out since September. The light haze is worse. The shadows grow weekly, it seems. Everything appears darker, literally and figuratively. Anyone I look at seems backlit and can’t be identified easily. I’m quicker to ask who I am talking to, and that has taken some people aback. My own physical vulnerabilities are the one area that people are not used to me being so blunt about.
The floater setbacks skipped August but compensated with something that was not an event I could cope with, but a gradual erosion that has kept this blind fool on uncertain footing.
The latest setback was Wednesday, 14 December 2011. I’m coping, best I can, but I need to give fair warning to those who care, those who control, and both: don’t try tugging on my leash now, because you will be in for one hell of a ride when this scrawny mutt drags your ass across the yard.
I can be absolutely candid with some friends. Often, however, I find I get candid only about certain things with certain people and hold back other things.
Think of me as Woody Allen: I compartmentalize. If one area gets rough, I can always hop into another box until things calm in the first or I decide it’s time to close the box off for good. Maybe this is a sign of some undiagnosed paranoid schizophrenia. I’d read more to find out, but I can’t see to comfortably read anymore, and me reading that might turn into a hypochondriac reading medical journals.
Mentally I picture certain audiences when writing specific posts, like I am talking to specific people about specific things rather than an general audience that includes people I haven’t had much chance to talk to in too long, or complete strangers.
I am pretty candid in talking about my past doctors. I have not been afraid to name names because as long as I stick to the truth I cannot be sued for libel. But when it comes to current doctors, whether for the eye or my GP, I am treating them as I treat friends in the blog: they are rendered anonymous, male whether they are truly male, female or undetermined. That’s the respectful and polite thing. It also makes sure that I don’t piss off someone who is in control of a situation where I am anesthetized and could be hypnotized into wetting myself any time I hear the word "snowflake."
I talk about my difficulties in current things now because life has been hell since Thanksgiving and every compartment is on fire, it seems. Blindness has robbed me of a lot of self control and no less than five of the compartment fires all touch on other people’s control freak issues or my own self control/self sufficiency issues.
I expected the fourth setback in August, but I suffered no sudden appearance of a floater. That would be a good thing, but instead of a sudden onset, I have experienced a steady gradual fade out since September. The light haze is worse. The shadows grow weekly, it seems. Everything appears darker, literally and figuratively. Anyone I look at seems backlit and can’t be identified easily. I’m quicker to ask who I am talking to, and that has taken some people aback. My own physical vulnerabilities are the one area that people are not used to me being so blunt about.
The floater setbacks skipped August but compensated with something that was not an event I could cope with, but a gradual erosion that has kept this blind fool on uncertain footing.
The latest setback was Wednesday, 14 December 2011. I’m coping, best I can, but I need to give fair warning to those who care, those who control, and both: don’t try tugging on my leash now, because you will be in for one hell of a ride when this scrawny mutt drags your ass across the yard.
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.
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.
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