I used insulin derived from pork and beef pancreas until sometime in the mid 1990’s. With the human insulin –called Humulin– having been developed and patented in the 1980's, pharmaceutical giant Eli Lilly and Company made a concentrated effort to make pork and beef insulin obsolete with massive price gouging that made it cheaper for self-pay patients like me to switch ro humulin. A vial of animal insulin was $10.00 in 1992. The same vial approached or exceeded $20.00 by 1997 (maybe before then,) and had perhaps exceeded the price of humulin. Then Eli Lilly and its fine company just stopped making old-time insulin because it was no longer cost effective to make for "so few" patients. Lobbying of doctors helped force the migration of patients to the patented product.
My memory of the exact when of this is faulty and I cannot recall the year of change with any certainty, but the price of the animal insulin seemed to rise several times per year while I lived near a Pawtucket Walgreens from 1991 to 1994. I don’t remember where I was living when informed by Walgreens that Lilly was discontinuing animal insulin. I specify this in the spirit of remaining as accurate as possible. I did not have much choice other than to buy the patented Humulin at higher costs. The same vial exceeds $50.00 at any pharmacy now, which to me demonstrates continuous greedy gouging.
I repeat that from what I could feel, the only change for me with Humulin was that my body metabolizes it "better" than pork and beef insulin to the point that I do not feel physical symptoms until the blood sugar has fallen critically low. I sensed no change in the way the insulin actually reacted to food. If anything, the bodily sensation that "all" insul;in had been fully consumed after 12 hours was more definite with the human insulin than the animal insulin. The animal insulin seemed to last longer.
I made the change without doctor supervision. This was not a choice but the result of an utter lack of choice, financially. My only adult exposure to diabetes specialists had been an expensive, distressing and discourteous experience that left such a bad taste in my mouth, I still feel it in my teeth some 20_ years later.
Nor did I have a choice in changing insulin. The animal insulin was discontinued by the only manufacturer in favor of Humulin. Monopolist Eli Lilly had me over a barrel and would pork me like only humans do.
Tuesday, July 31, 2012
Monday, July 30, 2012
Feeling it Out: Insulin Changes
I used insulin derived from pork and beef pancreas until about 1997. With the human insulin –called Humulin– having been developed and patented in the 1980's, pharmaceutical giant Eli Lilly and Company made a concentrated effort to make pork and beef insulin obsolete with massive price gouging that made it cheaper for self-pay patients like me to switch ro humulin. A vial of animal insulin was $10.00 in 1992. The same vial approached or exceeded $20.00 by 1997 (maybe before then,) and had perhaps exceeded the price of humulin. Then Eli Lilly and its fine company just stopped making old-time insulin available because it was no longer cost effective to make for "so few" patients. (If this statement is factually wrong, blame the Walgreens pharmacist who said this at the time. It is possible that Walgreens just did not want to carry the extra product anymore.) Lobbying of doctors helped force the migration of patients to the patented product.
Insulins always seem to come with warnings not to change dose or type outside a doctor’s supervision . I could not afford a doctor back then. I just made the switch and paid attention to what my body told me.
In a big way,"Humulin" worked better. My body seemed to absorb it more efficiently. That was not entirely a good thing, especially for a diabetic who managed by feel. Humulin absorbed so well that physical symptoms no longer served as the first signs that my blood sugar level was hitting a relative low. Instead, the big change came in mood. On good days, I could say, "wow, this minor frustration is irritating me way too much. My sugar must be going down, so I’d better eat." On really good days, I would notice nothing until the sugar was critically low. On moderate days I could tell by a surge of temper if things had been calm for a while. On the bad days, escalating frustrations triggered explosion. Those fits always cause embarrassment. When they’re witnessed, or even worse, when they end up directed at people I care about, they trigger lasting bouts of depression. Here’s a secret of the psychology that has raised many eyebrows: I am "wound too tight" in overcompensation for that daily potential to always "lose it" because of constant changes and fluctuations in by biochemistry.
True enough, it’s easy to say, "it’s lunchtime" or "I shot up four hours ago" and stop what I’m doing to eat. Call me OCD or ADD, but I lose track of time easily, even back when I could easily see clocks.
The old pork and beef insulin was consistent in giving physical hints that the sugar was low. I felt them more readily. That does not mean that I was without that biochemical irritation or surge of black temper, but those things happened less frequently on the old insulin.
Being a financially desperate diabetic pushed me into self management outside accepted practices. Desperate lives lead to desperate living. I learned how to manage my condition by feel, and in so many ways, I did remarkably well. No doctor would agree: they manage by blood sugar numbers, not by how their patients feel.
Insulins always seem to come with warnings not to change dose or type outside a doctor’s supervision . I could not afford a doctor back then. I just made the switch and paid attention to what my body told me.
In a big way,"Humulin" worked better. My body seemed to absorb it more efficiently. That was not entirely a good thing, especially for a diabetic who managed by feel. Humulin absorbed so well that physical symptoms no longer served as the first signs that my blood sugar level was hitting a relative low. Instead, the big change came in mood. On good days, I could say, "wow, this minor frustration is irritating me way too much. My sugar must be going down, so I’d better eat." On really good days, I would notice nothing until the sugar was critically low. On moderate days I could tell by a surge of temper if things had been calm for a while. On the bad days, escalating frustrations triggered explosion. Those fits always cause embarrassment. When they’re witnessed, or even worse, when they end up directed at people I care about, they trigger lasting bouts of depression. Here’s a secret of the psychology that has raised many eyebrows: I am "wound too tight" in overcompensation for that daily potential to always "lose it" because of constant changes and fluctuations in by biochemistry.
True enough, it’s easy to say, "it’s lunchtime" or "I shot up four hours ago" and stop what I’m doing to eat. Call me OCD or ADD, but I lose track of time easily, even back when I could easily see clocks.
The old pork and beef insulin was consistent in giving physical hints that the sugar was low. I felt them more readily. That does not mean that I was without that biochemical irritation or surge of black temper, but those things happened less frequently on the old insulin.
Being a financially desperate diabetic pushed me into self management outside accepted practices. Desperate lives lead to desperate living. I learned how to manage my condition by feel, and in so many ways, I did remarkably well. No doctor would agree: they manage by blood sugar numbers, not by how their patients feel.
Friday, July 27, 2012
The Recombinant Combatant
In speaking of different injectable insulins, I mentioned "recombinant" DNA, usually put in insulin terms as rDNA. Eli Lilly and Company speaks of "rDNA origin" or "rDNA (human) insulin." Trying to keep the blog post to "blog friendly" word limits prevented a more basic and user friendly definition at the time.
Different sites define "recombinant DNA" as "combined DNA," "artificial DNA," "technological DNA," and "genetically modified DNA." In my quick research, I encountered only insulin manufacturers indicating that "recombinant" meant "human." Their wording is cautious, not stating "human" is the definition of "recombinant" but misleading people into assuming that definition by context.
Basically and keeping to insulin applications, "recombinant technology" is a scientific process where different strands of DNA are combined to create or isolate the specific biochemicals needed, in this case the insulin hormone. Yes, this is a cloning process, not of entire bodies but of specific cells. I don’t know that the pharmaceutical companies are constantly combining DNA strands for new batches of insulin. I assume they clone the insulin cells on a massive scale to produce those tiny vials for more than $50.00 each.
"Cloning" is a loaded word. There is the risk of "moral" outrage by people who envision that the process involves the cloning of entire people, the removal of the insulin from their bodies, then disposal of the bodies as by-products used in cat food or something. I was a kid at the time, but remember newscasts reporting the first test tube" baby and the moral opposition some people had to the process. As an adult, I have seen (back when I could see) noses wrinkle in disdain and disapproval when a pregnant woman who candidly admitted to getting knocked up "in vitro" left the room.
Experiences like that give me some understanding of why the pharmaceuticals might mislead potential consumers and the users of their products about the true origins of "human origin" insulin. The nut jobs who would find cloned insulin as some kind of abomination do exist. The rDNA based insulin hit the market in the 1980’s, yet the pharmaceuticals continue to mislead about the definition of "recombinant" as if the word itself means "human." They went so far as to dub their patented formula "Humulin."
So what else might those same companies mislead the public about?
Different sites define "recombinant DNA" as "combined DNA," "artificial DNA," "technological DNA," and "genetically modified DNA." In my quick research, I encountered only insulin manufacturers indicating that "recombinant" meant "human." Their wording is cautious, not stating "human" is the definition of "recombinant" but misleading people into assuming that definition by context.
Basically and keeping to insulin applications, "recombinant technology" is a scientific process where different strands of DNA are combined to create or isolate the specific biochemicals needed, in this case the insulin hormone. Yes, this is a cloning process, not of entire bodies but of specific cells. I don’t know that the pharmaceutical companies are constantly combining DNA strands for new batches of insulin. I assume they clone the insulin cells on a massive scale to produce those tiny vials for more than $50.00 each.
"Cloning" is a loaded word. There is the risk of "moral" outrage by people who envision that the process involves the cloning of entire people, the removal of the insulin from their bodies, then disposal of the bodies as by-products used in cat food or something. I was a kid at the time, but remember newscasts reporting the first test tube" baby and the moral opposition some people had to the process. As an adult, I have seen (back when I could see) noses wrinkle in disdain and disapproval when a pregnant woman who candidly admitted to getting knocked up "in vitro" left the room.
Experiences like that give me some understanding of why the pharmaceuticals might mislead potential consumers and the users of their products about the true origins of "human origin" insulin. The nut jobs who would find cloned insulin as some kind of abomination do exist. The rDNA based insulin hit the market in the 1980’s, yet the pharmaceuticals continue to mislead about the definition of "recombinant" as if the word itself means "human." They went so far as to dub their patented formula "Humulin."
So what else might those same companies mislead the public about?
Wednesday, July 25, 2012
Other Options for Pincushions Everywhere
The mainstays R and N are not the only injectable insulin types, only those most commonly used.
The only other I have used as an adult is "70/30." This is a cheat if claimed as a truly "other" kind, as it is a premixed formula of R and N with a balance of 30% regular and 70% N. It is a convenience product for me, as I normally inject 80-85% N. If I wake with the sugar feeling low or am resigned to taking an evening dose of insulin when the sugar is low, I will skip the R entirely so as to avoid a blood sugar lowering kick.
I took Lente insulin instead of NPH as a young child, until about the age of 12 when new doctors switched me to NPH during a total retooling of the disease management. Lenta, in comparison to NPH, kicks in slightly later and lasts longer before totally petering out. I don’t remember specific bodily effects, but a nighttime shot was considered something to be avoided. Any nighttime necessity was impressed on me as something bad. When I think of my lack of growth from First to Third grades, I have no doubt that the entire attitude about the sugar was bullshit, a holdover of antiquated times when diabetes management amounted to starving the patients.
An "Ultra-lente" insulin is also available. I never used it. Quick research reports that it doesn’t kick in for six hours or more and can last 36 hours.
The R, N, 70/30, L and are natural insulins manufactured from "recombinant" technology, based on human organic compounds. I used insulin derived from pork and beef pancreas until about 1997. With the human insulin –called Humulin– having been developed and patented in the 1980’s, pharmaceutical giant Eli Lilly and Company made a concentrated effort to make pork and beef insulin obsolete with massive price gouging that made it cheaper for the self-pay patients like me to switch ro humulin. I definitely remember that a vial of animal insulin was $10.00 in 1992. The same vial approached or exceeded $20.00 by 1997, and had perhaps exceeded the price of humulin. Then Eli Lilly and its fine company just stopped making old-time insulin because it was no longer cost effective to make for "so few" patients. Lobbying of doctors helped force the migration of patients to the patented product.
The other types of insulin for Type Ones and the Twos who must or choose to inject are chemically modified formulas. All of these use the word "insulin" before the trade names: Aspart, Glargine, and Lispro. Glargine was engineered to act over a more 24-hour duration.
Aspart and Lispro were both engineered to be faster acting than Regular insulin, and to use themselves up faster. The invention of these patented formulas coincides almost perfectly with the push by doctors to manage diabetes only with fast acting insulin injected directly before meals. On the most general principles based on more-than-average but not academic knowledge, the inject-only-upon-meal theory of diabetes management benefits the pharmaceutical companies and their allies of syringe, lancet, and test strip manufacturers more than it could benefit patients.
The only other I have used as an adult is "70/30." This is a cheat if claimed as a truly "other" kind, as it is a premixed formula of R and N with a balance of 30% regular and 70% N. It is a convenience product for me, as I normally inject 80-85% N. If I wake with the sugar feeling low or am resigned to taking an evening dose of insulin when the sugar is low, I will skip the R entirely so as to avoid a blood sugar lowering kick.
I took Lente insulin instead of NPH as a young child, until about the age of 12 when new doctors switched me to NPH during a total retooling of the disease management. Lenta, in comparison to NPH, kicks in slightly later and lasts longer before totally petering out. I don’t remember specific bodily effects, but a nighttime shot was considered something to be avoided. Any nighttime necessity was impressed on me as something bad. When I think of my lack of growth from First to Third grades, I have no doubt that the entire attitude about the sugar was bullshit, a holdover of antiquated times when diabetes management amounted to starving the patients.
An "Ultra-lente" insulin is also available. I never used it. Quick research reports that it doesn’t kick in for six hours or more and can last 36 hours.
The R, N, 70/30, L and are natural insulins manufactured from "recombinant" technology, based on human organic compounds. I used insulin derived from pork and beef pancreas until about 1997. With the human insulin –called Humulin– having been developed and patented in the 1980’s, pharmaceutical giant Eli Lilly and Company made a concentrated effort to make pork and beef insulin obsolete with massive price gouging that made it cheaper for the self-pay patients like me to switch ro humulin. I definitely remember that a vial of animal insulin was $10.00 in 1992. The same vial approached or exceeded $20.00 by 1997, and had perhaps exceeded the price of humulin. Then Eli Lilly and its fine company just stopped making old-time insulin because it was no longer cost effective to make for "so few" patients. Lobbying of doctors helped force the migration of patients to the patented product.
The other types of insulin for Type Ones and the Twos who must or choose to inject are chemically modified formulas. All of these use the word "insulin" before the trade names: Aspart, Glargine, and Lispro. Glargine was engineered to act over a more 24-hour duration.
Aspart and Lispro were both engineered to be faster acting than Regular insulin, and to use themselves up faster. The invention of these patented formulas coincides almost perfectly with the push by doctors to manage diabetes only with fast acting insulin injected directly before meals. On the most general principles based on more-than-average but not academic knowledge, the inject-only-upon-meal theory of diabetes management benefits the pharmaceutical companies and their allies of syringe, lancet, and test strip manufacturers more than it could benefit patients.
Tuesday, July 24, 2012
“Irregular” Insulin
Regular insulin, known as "R," is considered fast-acting or instant acting. It begins working in as little as ten to fifteen minutes. It stays in the body for mere hours. Once it is absorbed, it’s gone.
The other common base insulin is known these days as "N." This used to be known as NPH, for neutral protamine Hagedorn, but seeing that amounts to a steaming BS heap of gibberish and jargon, I’m not surprised they gave up and now just call it N..
Time release insulin has a delayed action in the body. "N" is considered a midrange time action and does not begin effecting the body for two to three hours. Nor does it release all at once. By what I feel (meaning scientific or official definitions may differ from my practical experience) N takes effect in several spurts throughout the day. In my subjective experience, it seems to have three spurts and is completely gone after about 12 hours.
When I say it is gone, I do mean gone. I must take two shots a day. In that twelve to fourteen hour range, I can feel symptoms of both low and high blood sugar at the same time if I haven’t adequately eaten throughout the day. Eating at that time will kick the discomforts of high sugar into speedy overdrive.
My GP has had me on two equal doses of insulin daily. The morning dose works well for me, but I have problems with the evening dose. This does not surprise me, as this dosage model does not mimic the way a "healthy" person’s body releases insulin in response to food. The body may continue to release small amounts of insulin to keep the body regulated throughout the night. My body can’t do that, but cannot go without insulin for so long.
Nighttime balance has been the great difficulty for me. If I don’t eat enough, I cannot sleep. Eat too much and the sugar is at an uncomfortable and possibly damaging peak by the time I wake up. I’ve tried experimenting with dosage reductions, never with results I have bee n comfortable with. The time release insulin releases whether I eat or not. Not eating will bring insomnia when the insulin kicks in, even if it does not dip to a more critical low. With reduced dosage, that same reasonable snack (usually cereal) is often too much; the sugar will be higher through the night and when I wake.
Once the time release has been injected, it’s there, needed or not. A busy or chaotic day that does not allow time to eat can be devastating. Things can be put off only so long before there’s a crash. This would be true for anyone, but is more amplified for a diabetic. The balance diabetics must maintain isn’t quite difficult to maintain, but is far too easy to get sidetracked.
The other common base insulin is known these days as "N." This used to be known as NPH, for neutral protamine Hagedorn, but seeing that amounts to a steaming BS heap of gibberish and jargon, I’m not surprised they gave up and now just call it N..
Time release insulin has a delayed action in the body. "N" is considered a midrange time action and does not begin effecting the body for two to three hours. Nor does it release all at once. By what I feel (meaning scientific or official definitions may differ from my practical experience) N takes effect in several spurts throughout the day. In my subjective experience, it seems to have three spurts and is completely gone after about 12 hours.
When I say it is gone, I do mean gone. I must take two shots a day. In that twelve to fourteen hour range, I can feel symptoms of both low and high blood sugar at the same time if I haven’t adequately eaten throughout the day. Eating at that time will kick the discomforts of high sugar into speedy overdrive.
My GP has had me on two equal doses of insulin daily. The morning dose works well for me, but I have problems with the evening dose. This does not surprise me, as this dosage model does not mimic the way a "healthy" person’s body releases insulin in response to food. The body may continue to release small amounts of insulin to keep the body regulated throughout the night. My body can’t do that, but cannot go without insulin for so long.
Nighttime balance has been the great difficulty for me. If I don’t eat enough, I cannot sleep. Eat too much and the sugar is at an uncomfortable and possibly damaging peak by the time I wake up. I’ve tried experimenting with dosage reductions, never with results I have bee n comfortable with. The time release insulin releases whether I eat or not. Not eating will bring insomnia when the insulin kicks in, even if it does not dip to a more critical low. With reduced dosage, that same reasonable snack (usually cereal) is often too much; the sugar will be higher through the night and when I wake.
Once the time release has been injected, it’s there, needed or not. A busy or chaotic day that does not allow time to eat can be devastating. Things can be put off only so long before there’s a crash. This would be true for anyone, but is more amplified for a diabetic. The balance diabetics must maintain isn’t quite difficult to maintain, but is far too easy to get sidetracked.
Monday, July 23, 2012
Type Cast
Because the diabetic’s body does not manufacture its own insulin, the hormone must be taken by external means. Type 1 "childhood" diabetic must inject "true and full" insulin. Type 2 "age advanced" diabetics can sometimes take oral medication, if the pancreas (the organ that produces insulin) still works somewhat. Type 1’s cannot use the oral or other medications; on diagnosis, they must automatically begin treatment with the needle.
These basic differences encourage my theory that Type 1 and Type 2 Diabetes are two different conditions. I think Type Ones actually have more flexibility in dietary lapses because they can inject more insulin to counterbalance the excess or "naughty" food. The Type 2 on oral meds can’t do that. Strict adherence to diet and routine is more important, and probably more difficult as most Type 2’s are older and more set in their ways at the time of diagnosis than most Type Ones. The fattening of America at younger ages has made this last statistic less consistent.
I see one other major drawback to Type Two diabetics, and by extension to these "newer groups" dubbed "pre-diabetics." People reliant on or able to use oral medications are prone to become the guinea pigs and outright victims of the pharmaceutical companies. The Ones have no options other than injectable insulin. The Options of Twos allow for experimentation and they get prescribed medicines with unknown long term effects such as Actos. I have heard many tales of Type Two patients with doctors who change what meds they are on with what I consider alarming regularity. As doctors experiment, the patient’s blood sugar often stays elevated. While the blood sugar stays elevated, the catastrophic effects of the disease will continue.
I think it is best for newly diagnosed Twos to forego the oral meds and begin right with real, injectable insulins The option needs to be discussed with your doctor. If the doctor insists that you don’t need insulin that badly, there’s a good possibility your condition could be treated with diet and exercise and the only the pharmaceutical companies will be direct beneficiaries of your use of their products.
I know, people are afraid of the needle and resist. I could understand this more in the "good ol’ days" when sugar testing was mostly done through the urine. Now, diabetics are expected to go through multiple blood tests per day. The syringe with which you inject insulin is unnoticeable in comparison to blood sampling for the home testing meters, even those that are "less painful" by testing off the arm rather than the fingers.
I am morally and ethically opposed to the artificial necessity of finger prick testing as the pharmaceutical companies buy and bury any patent for non-invasive blood sugar testing such as scanners. (With such technology, the pharmaceuticals would lose the guaranteed captured-audience sales of test strips and lancets.) But until those technologies are made available, the Type Two in particular really has no choice as they cannot achieve the balance without the input of frequent testing.
These basic differences encourage my theory that Type 1 and Type 2 Diabetes are two different conditions. I think Type Ones actually have more flexibility in dietary lapses because they can inject more insulin to counterbalance the excess or "naughty" food. The Type 2 on oral meds can’t do that. Strict adherence to diet and routine is more important, and probably more difficult as most Type 2’s are older and more set in their ways at the time of diagnosis than most Type Ones. The fattening of America at younger ages has made this last statistic less consistent.
I see one other major drawback to Type Two diabetics, and by extension to these "newer groups" dubbed "pre-diabetics." People reliant on or able to use oral medications are prone to become the guinea pigs and outright victims of the pharmaceutical companies. The Ones have no options other than injectable insulin. The Options of Twos allow for experimentation and they get prescribed medicines with unknown long term effects such as Actos. I have heard many tales of Type Two patients with doctors who change what meds they are on with what I consider alarming regularity. As doctors experiment, the patient’s blood sugar often stays elevated. While the blood sugar stays elevated, the catastrophic effects of the disease will continue.
I think it is best for newly diagnosed Twos to forego the oral meds and begin right with real, injectable insulins The option needs to be discussed with your doctor. If the doctor insists that you don’t need insulin that badly, there’s a good possibility your condition could be treated with diet and exercise and the only the pharmaceutical companies will be direct beneficiaries of your use of their products.
I know, people are afraid of the needle and resist. I could understand this more in the "good ol’ days" when sugar testing was mostly done through the urine. Now, diabetics are expected to go through multiple blood tests per day. The syringe with which you inject insulin is unnoticeable in comparison to blood sampling for the home testing meters, even those that are "less painful" by testing off the arm rather than the fingers.
I am morally and ethically opposed to the artificial necessity of finger prick testing as the pharmaceutical companies buy and bury any patent for non-invasive blood sugar testing such as scanners. (With such technology, the pharmaceuticals would lose the guaranteed captured-audience sales of test strips and lancets.) But until those technologies are made available, the Type Two in particular really has no choice as they cannot achieve the balance without the input of frequent testing.
Sunday, July 22, 2012
Staying Regular
There’s different kinds of insulin. I take injections of "R" and "N." R used to stand for regular and "N" used to be part of "NPH." R acts instantly while "N" is a time release medication.
Insulin is a hormone the body secretes in reaction to consumption. The body cannot make energy from food without insulin.
Because the diabetic’s body does not manufacture its own insulin, the hormone must be taken by external means. Type 1 "childhood" diabetic must inject "true and full" insulin. Type 2 "age advanced" diabetics can sometimes take oral medication, if the pancreas (the organ that produces insulin) still works somewhat.
The metabolic process is automatic with "healthy" people. The body produces insulin in reaction to food, and the proper amount to convert the intake to energy or to store energy in the form of body fat. The failure of the process is why a symptom of Type 1 onset is weight loss; the body is not converting food to stored energy, thus it enters the system as raw material and stays in the blood rather than converts to fat.
Some modern theories and practices of diabetes "management" has the patient using only fast acting insulin to be taken with every meal. This more closely replicates how the body works. That course of treatment wouldn’t really work for me. It seems too inconvenient. The patient must always have insulin and syringes available. I am also cynical about some of the larger implications. About the same time this course of treatment emerged, philosophies on insulin storage changed. In the "old days," insulin was supposed to be refrigerated at all times. Upon use, the patient would roll the vial between his hands to both mix the insulin and to slightly warm it. Now, in perfect compatibility with treatment that increases the profits of syringe manufacturers, insulin should be refrigerated until it is opened, and then left at room temperature for up to thirty days. This conflicts with my mental processes that have me trained that things can be stored at room temperature until they are opened, and must be refrigerated afterwards.
My other concern is another "logical" resistance. I think the "healthy body" probably ensures trace amounts of natural insulin would always be kicking around the bloodstream. If a diabetic stops using time release insulin altogether, he would have no "background" insulin remaining.
To great controversy from just about everyone in my life, do not test my blood sugar. I manage myself by how I feel. Having done that for so long, I can say with certainty that I can feel it when my insulin runs out. The "regular" insulin works instantly, and the time release lasts about twelve hours. Even when I have eaten nothing and am feeling signs of needing to eat, I can also feel the need of insulin.
The conflicting feelings can be confusing. I do not need help getting confused even that twice a day of IO stretch time between injections. I couldn’t imagine getting that "insulin empty" feeling multiple times throughout the day.
Insulin is a hormone the body secretes in reaction to consumption. The body cannot make energy from food without insulin.
Because the diabetic’s body does not manufacture its own insulin, the hormone must be taken by external means. Type 1 "childhood" diabetic must inject "true and full" insulin. Type 2 "age advanced" diabetics can sometimes take oral medication, if the pancreas (the organ that produces insulin) still works somewhat.
The metabolic process is automatic with "healthy" people. The body produces insulin in reaction to food, and the proper amount to convert the intake to energy or to store energy in the form of body fat. The failure of the process is why a symptom of Type 1 onset is weight loss; the body is not converting food to stored energy, thus it enters the system as raw material and stays in the blood rather than converts to fat.
Some modern theories and practices of diabetes "management" has the patient using only fast acting insulin to be taken with every meal. This more closely replicates how the body works. That course of treatment wouldn’t really work for me. It seems too inconvenient. The patient must always have insulin and syringes available. I am also cynical about some of the larger implications. About the same time this course of treatment emerged, philosophies on insulin storage changed. In the "old days," insulin was supposed to be refrigerated at all times. Upon use, the patient would roll the vial between his hands to both mix the insulin and to slightly warm it. Now, in perfect compatibility with treatment that increases the profits of syringe manufacturers, insulin should be refrigerated until it is opened, and then left at room temperature for up to thirty days. This conflicts with my mental processes that have me trained that things can be stored at room temperature until they are opened, and must be refrigerated afterwards.
My other concern is another "logical" resistance. I think the "healthy body" probably ensures trace amounts of natural insulin would always be kicking around the bloodstream. If a diabetic stops using time release insulin altogether, he would have no "background" insulin remaining.
To great controversy from just about everyone in my life, do not test my blood sugar. I manage myself by how I feel. Having done that for so long, I can say with certainty that I can feel it when my insulin runs out. The "regular" insulin works instantly, and the time release lasts about twelve hours. Even when I have eaten nothing and am feeling signs of needing to eat, I can also feel the need of insulin.
The conflicting feelings can be confusing. I do not need help getting confused even that twice a day of IO stretch time between injections. I couldn’t imagine getting that "insulin empty" feeling multiple times throughout the day.
Thursday, July 19, 2012
Balancing Act
I can fall into bad habits of eating just for the sugar instead of eating for the enjoyment of the taste or for actual nutrition.
The compensation in such times is a difficult balance. A reasonable tuna salad sandwich for lunch may not be enough to bring the sugar to a level tat feels right. I find it dangerously easy to overcompensate with a lunch begun when the symptoms of insulin shock have begun. It’s just too easy to keep eating until the physical feeling of urgent must-eat panic subside. I can eat faster than the food can get to the bloodstream and level things off. At those times, the feeling of "too low" can turn into the opposite extreme of "too high" with stunning speed.
I have typically found myself trapped between constraints of time or diet, between one surge or another, food or insulin.
The solution is to eat many small, meticulously planned meals throughout the day, each balanced with the traditional four food groups. A rough guideline is to eat one third as much three times as often, in perfectly timed synchronization to when the insulin was injected..
Carbs should be de-emphasized, produce over-emphasized...but with more vegetables and less fruit, because fruit’s too sugary...except for certain vegetables that are too starchy, and make sure you eat enough carbs alongside protein sources, but not too much carbs and for that matter not too much protein either because that’s not good for the tender and delicate diabetic kidneys.... I think you get the idea of how difficult the proper balance can be. It certainly can be done, but I have always found it next to impossible to maintain the "truest" management for more than a few days at a time. More often than not, bosses have never been happy to accommodate. Legally, they must, but forcing such issues endears no one in the workplace, particularly when envious busy-bodies decry others’"special treatment."
The compensation in such times is a difficult balance. A reasonable tuna salad sandwich for lunch may not be enough to bring the sugar to a level tat feels right. I find it dangerously easy to overcompensate with a lunch begun when the symptoms of insulin shock have begun. It’s just too easy to keep eating until the physical feeling of urgent must-eat panic subside. I can eat faster than the food can get to the bloodstream and level things off. At those times, the feeling of "too low" can turn into the opposite extreme of "too high" with stunning speed.
I have typically found myself trapped between constraints of time or diet, between one surge or another, food or insulin.
The solution is to eat many small, meticulously planned meals throughout the day, each balanced with the traditional four food groups. A rough guideline is to eat one third as much three times as often, in perfectly timed synchronization to when the insulin was injected..
Carbs should be de-emphasized, produce over-emphasized...but with more vegetables and less fruit, because fruit’s too sugary...except for certain vegetables that are too starchy, and make sure you eat enough carbs alongside protein sources, but not too much carbs and for that matter not too much protein either because that’s not good for the tender and delicate diabetic kidneys.... I think you get the idea of how difficult the proper balance can be. It certainly can be done, but I have always found it next to impossible to maintain the "truest" management for more than a few days at a time. More often than not, bosses have never been happy to accommodate. Legally, they must, but forcing such issues endears no one in the workplace, particularly when envious busy-bodies decry others’"special treatment."
Tuesday, July 17, 2012
Wagging Fingers
I see a positive aspect of what appears to be my social disconnection. I generally do not care what people think of me. Usually want to know what they think and why, and will take it to heart if a negative appraisal stems from misunderstanding or incorrect assumption. I will actually stress about some such misunderstandings, and those type of situations are the ones I will try to improve..
My current level of disability is perpetually one of those potential situations.
Under some circumstances and from some mental angles, I feel that way about my disabling problems. This is specific to an incorrect assumption: these problems developed because I was a "bad diabetic."
While I did not manage my sugar through the years by the ways that benefit the pharmaceutical companies as much or more than they benefit the patients. This does not mean that I was not taking care of the sugar.
My numbers typically ran higher than doctor recommendation, but I had few problems as a result. I was healthy, it maybe I should rephrase that as I felt healthy and demonstrated no ill effects solely from diabetes. The sugar certainly exerted influence, but was not the root cause. The sugar exerts influence over everything. A case of the sniffles is more like with diabetics to become full blown flue, pneumonia, strep throat, and nasal infection.
Diabetes is simple: insulin manufacture by the body or effectiveness in the body is reduced, impaired, or has ceased. The effects of the deficiency of this one hormone becomes catastrophic, and the disease becomes a circulatory disease and a metabolic disease and an immunodeficiency disease all in one. Diabetics are prone to more problems because their bodies have been compromised and taxed. The longer the patient has had the disease, the more likely they are to develop problems in conjunction with ailments that would be nothing more than an inconvenience to a non-diabetic, a.k.a. "a healthy person."
I may have a touch of hypocrisy about this, because I cannot muster as much sympathy for the same situations among adult onset type-2 diabetics. Their form of the disease usually developed from lifelong habits of unhealthy living, particularly bad diet and its usual companion chronic obesity
Type 2 diabetes is avoidable more often than not, and the correlation in Type 2 among youths and children coinciding with an increase in body fat among the same group bears this out.
My right eye declined in part due to my then-ignorance of retinapathy symptoms, but was catalyzed in 2003 by a cornea abrasion. The diabetes was opportunistic of another problem.
The left eye originally went bad as a vitreous hemorrhage in reaction to Cialis. The hemorrhage healed, but I remain impaired in that eye in multiple ways because of things doctors did, most noticeably PRP surgery that I should not have let others scare me into. Diabetes influences this outcome by the eagerness of the doctor to do the PRP, and the need for the Cialis.
The development of the Charcot foot is undeniably an effect of diabetes as these days, "only" diabetics get it.
Strangers and some acquaintances alike will never stop wagging fingers and insisting that I brought these misfortunes on myself by being a bad diabetic. On most levels, I don’t care what others say or do and I always know I cannot control the thoughts and actions of others.
I just don’t want them to get too upset when they see what finger I wag back at them.
My current level of disability is perpetually one of those potential situations.
Under some circumstances and from some mental angles, I feel that way about my disabling problems. This is specific to an incorrect assumption: these problems developed because I was a "bad diabetic."
While I did not manage my sugar through the years by the ways that benefit the pharmaceutical companies as much or more than they benefit the patients. This does not mean that I was not taking care of the sugar.
My numbers typically ran higher than doctor recommendation, but I had few problems as a result. I was healthy, it maybe I should rephrase that as I felt healthy and demonstrated no ill effects solely from diabetes. The sugar certainly exerted influence, but was not the root cause. The sugar exerts influence over everything. A case of the sniffles is more like with diabetics to become full blown flue, pneumonia, strep throat, and nasal infection.
Diabetes is simple: insulin manufacture by the body or effectiveness in the body is reduced, impaired, or has ceased. The effects of the deficiency of this one hormone becomes catastrophic, and the disease becomes a circulatory disease and a metabolic disease and an immunodeficiency disease all in one. Diabetics are prone to more problems because their bodies have been compromised and taxed. The longer the patient has had the disease, the more likely they are to develop problems in conjunction with ailments that would be nothing more than an inconvenience to a non-diabetic, a.k.a. "a healthy person."
I may have a touch of hypocrisy about this, because I cannot muster as much sympathy for the same situations among adult onset type-2 diabetics. Their form of the disease usually developed from lifelong habits of unhealthy living, particularly bad diet and its usual companion chronic obesity
Type 2 diabetes is avoidable more often than not, and the correlation in Type 2 among youths and children coinciding with an increase in body fat among the same group bears this out.
My right eye declined in part due to my then-ignorance of retinapathy symptoms, but was catalyzed in 2003 by a cornea abrasion. The diabetes was opportunistic of another problem.
The left eye originally went bad as a vitreous hemorrhage in reaction to Cialis. The hemorrhage healed, but I remain impaired in that eye in multiple ways because of things doctors did, most noticeably PRP surgery that I should not have let others scare me into. Diabetes influences this outcome by the eagerness of the doctor to do the PRP, and the need for the Cialis.
The development of the Charcot foot is undeniably an effect of diabetes as these days, "only" diabetics get it.
Strangers and some acquaintances alike will never stop wagging fingers and insisting that I brought these misfortunes on myself by being a bad diabetic. On most levels, I don’t care what others say or do and I always know I cannot control the thoughts and actions of others.
I just don’t want them to get too upset when they see what finger I wag back at them.
Saturday, July 14, 2012
Difficult
I’ve been dealing with the difficulties of being blind since October 2009, and dealing with the difficulties of the bad foot since the autumn of 2011. The dealing had been primarily difficult because neither situation had been stable or consistent and have been more difficult because the two problems make dealing with the other even harder.
Most people who know me seem to be of the opinion that I am dealing with things remarkably well, "better than I would be." This is probably true. I am stubbornly resilient. Qualities that other people have found difficult or off putting have carried me through. Through the years, I could have worked on being a kinder, gentler person, but somehow I doubt any friends this might have made would particularly be there for me now; changing who you are or appear to be seldom gains you much in the long term. People who need that level of ingratiation seldom make loyal friends.
I have not been one in adulthood to particularly care about what other people say or do. I’ve always tried to remain aware of the talk and opinions around me, but I haven’t put much stock in them I’ve never been one of the sheep ion a mindless flock and never wanted to be a cliff-diving lemming. When I was a young child, I just wanted to do what interested me and didn’t have the social skills to totally sacrifice those things in order to pretend care about the interests of the group. As an older child and an adult, I have a strong habit for making up my own mind about things and people. This can still be a social barrier, and the result is that I often have strongly liked unpopular people and strongly disliked some very popular ones when I found that the glittery shine if their personality did not penetrate to their character. This, for me, falls into the philosophy of never smile .at the crocodile just because it looks like he’s smiling at you. The crocodile will consume you. I’m a bit aloof, but strive to treat people well and, most importantly by my seemingly incomprehensible standards, treat people fairly. I’m honest, and that is not the endearing quality your mother indicated it would be. Most people respond best to hearing what they want to hear. I want to hear the truth, not empty agreement or what someone else thinks I want to hear. I don’t expect anyone to agree with me on everything, and don’t respond to others’ expectations that I agree with them.
That really sums up my inter-personal tendencies to be a loner or only at the peripheral of small groups. It also explains my part in difficulties with doctors.
Doctors need to be honest. I see through the croc smiles when their advise is more of a benefit to the business of their practice as opposed to my long term well being.
These things can make me a "difficult" patient or person, but they are elements of the core strength of character without which I don’t think I would have been able to blindly limp along this far.
Most people who know me seem to be of the opinion that I am dealing with things remarkably well, "better than I would be." This is probably true. I am stubbornly resilient. Qualities that other people have found difficult or off putting have carried me through. Through the years, I could have worked on being a kinder, gentler person, but somehow I doubt any friends this might have made would particularly be there for me now; changing who you are or appear to be seldom gains you much in the long term. People who need that level of ingratiation seldom make loyal friends.
I have not been one in adulthood to particularly care about what other people say or do. I’ve always tried to remain aware of the talk and opinions around me, but I haven’t put much stock in them I’ve never been one of the sheep ion a mindless flock and never wanted to be a cliff-diving lemming. When I was a young child, I just wanted to do what interested me and didn’t have the social skills to totally sacrifice those things in order to pretend care about the interests of the group. As an older child and an adult, I have a strong habit for making up my own mind about things and people. This can still be a social barrier, and the result is that I often have strongly liked unpopular people and strongly disliked some very popular ones when I found that the glittery shine if their personality did not penetrate to their character. This, for me, falls into the philosophy of never smile .at the crocodile just because it looks like he’s smiling at you. The crocodile will consume you. I’m a bit aloof, but strive to treat people well and, most importantly by my seemingly incomprehensible standards, treat people fairly. I’m honest, and that is not the endearing quality your mother indicated it would be. Most people respond best to hearing what they want to hear. I want to hear the truth, not empty agreement or what someone else thinks I want to hear. I don’t expect anyone to agree with me on everything, and don’t respond to others’ expectations that I agree with them.
That really sums up my inter-personal tendencies to be a loner or only at the peripheral of small groups. It also explains my part in difficulties with doctors.
Doctors need to be honest. I see through the croc smiles when their advise is more of a benefit to the business of their practice as opposed to my long term well being.
These things can make me a "difficult" patient or person, but they are elements of the core strength of character without which I don’t think I would have been able to blindly limp along this far.
Friday, July 13, 2012
Cane-Do Attitude
The recent debate with two close friends where they were aggressively trying to sell me on the idea of using a blind man’s cane is far from the first time the suggestion reached my waxy ears.
The suggestion I remember best was around April 2010, back when I was recovering from the vitreous hemorrhage but had lost reading vision due to the improper cataract lense and was losing other overall vision due to the PRP procedure.
I was leaving the Social Security Administration and, until I was about two feet from her, did not see a woman in the double-wide hallway. Her clothes blended into the surrounding, leaving me without telltale signs of contrast.
The woman took up most of the wide hall. We're talking morbidly obese, four hundred pounds if she was an ounce. Her slow waddle removed the other sign I used to see things back then, motion, because her little feet just had more than they could readily handle.
She was obviously not used to not being seen and carried the attitude of the 400-pound gorilla in the room: she can sit wherever she wants. Even though I fully stopped short of any collision, she yelled at me to watch where I was going. I calmly apologized and said I was blind. I always try politeness as a first resort, I just don't follow through with diplomacy when it obviously will not work with specific people.
The woman continued yelling loudly to tell me that if I was blind I should be using a cane so other people could tell.
Do I need to put in more effort to compensate for other people? Do I have to rise above other people rudeness when they refuse to be polite or even mildly accommodating?
No, I don't.
I figured that if I was having a conversation with unsolicited suggestions being freely exchanged, that I should offer my own. I told her that she ought to lose weight to make more room for other people and continued on my way.
My mistake. She hadn’t been looking to exchange suggestions, only to tell me what she thought I needed to do. I never was the most socially adept person anyway. She was still screaming when the elevator doors closed.
The suggestion I remember best was around April 2010, back when I was recovering from the vitreous hemorrhage but had lost reading vision due to the improper cataract lense and was losing other overall vision due to the PRP procedure.
I was leaving the Social Security Administration and, until I was about two feet from her, did not see a woman in the double-wide hallway. Her clothes blended into the surrounding, leaving me without telltale signs of contrast.
The woman took up most of the wide hall. We're talking morbidly obese, four hundred pounds if she was an ounce. Her slow waddle removed the other sign I used to see things back then, motion, because her little feet just had more than they could readily handle.
She was obviously not used to not being seen and carried the attitude of the 400-pound gorilla in the room: she can sit wherever she wants. Even though I fully stopped short of any collision, she yelled at me to watch where I was going. I calmly apologized and said I was blind. I always try politeness as a first resort, I just don't follow through with diplomacy when it obviously will not work with specific people.
The woman continued yelling loudly to tell me that if I was blind I should be using a cane so other people could tell.
Do I need to put in more effort to compensate for other people? Do I have to rise above other people rudeness when they refuse to be polite or even mildly accommodating?
No, I don't.
I figured that if I was having a conversation with unsolicited suggestions being freely exchanged, that I should offer my own. I told her that she ought to lose weight to make more room for other people and continued on my way.
My mistake. She hadn’t been looking to exchange suggestions, only to tell me what she thought I needed to do. I never was the most socially adept person anyway. She was still screaming when the elevator doors closed.
Monday, July 9, 2012
Canes and Labels
I suppose I should put this in a more polite or literary way, but that also would just be compensating for other people’s comfort. There's got to be a limit to that, and I choose clarity: The expectation that I try even harder to make others more comfortable with my disability really pisses me off.
This is especially true with the suggestion that using a blind man’s cane would make complete strangers more comfortable.
I owe complete strangers more of my personal efforts why?
I don’t ask for political correctness I acknowledge limitations and ask for little help. If some minor point of compensation seems odd seems like I am asking too much, I readily and politely explain that I am visually impaired.
One recent need for a strange request that required an explanation to a stranger: I had to ask an old bat of a cashier at Home Depot to put my purchase in a bag instead of pointing to the bags for me to do it myself.
The recent argument with two close friends about cane use is far from the first time I have heard the suggestion. People cannot see with my eyes to know how and when I can or cannot see something specific. I am not blind, in the sense of living in total darkness. I am severely visually impaired, and the multiple factors and causes of that do make it difficult for people to figure out what I can or cannot see. I compensate for that already, so don’t ask for more.
The first cane suggestion was from the editor of a "disability culture" magazine who objected to my joke tagline that I do not use a cane because I am too afraid I will beat people with it when they persist in getting in my way anyway.
I think I disappointed the editor by not embracing the equipment and politics of the "disability culture." So far, while acknowledging my growing limitations and being as candid as possible about things, I have not let myself fall into whining, or succumbed to self pity. The most common way I have learned I cannot do things is by trying to do them. I have not internalized being blind or otherwise handicapped as part of my self concept.
Here in Rhode Island, it is considered discriminatory to state that an apartment being advertised is "in sight of" a landmark or "a short walk from" a bus stop or grocery store. I find that absurd. I have no expectation that the rest of the human race should be, or pretend to be, handicapped just because I and other people are. I forget the source–maybe an old Little River Band song?–but have always embraced a line that says something to the effect of "if the human race runs only as fast as the slowest runner, we get nowhere."
I just don’t buy into political correctness at the cost of frankness, and at this point in my existence as a gimp, a cane would be more of a label than a tool.
This is especially true with the suggestion that using a blind man’s cane would make complete strangers more comfortable.
I owe complete strangers more of my personal efforts why?
I don’t ask for political correctness I acknowledge limitations and ask for little help. If some minor point of compensation seems odd seems like I am asking too much, I readily and politely explain that I am visually impaired.
One recent need for a strange request that required an explanation to a stranger: I had to ask an old bat of a cashier at Home Depot to put my purchase in a bag instead of pointing to the bags for me to do it myself.
The recent argument with two close friends about cane use is far from the first time I have heard the suggestion. People cannot see with my eyes to know how and when I can or cannot see something specific. I am not blind, in the sense of living in total darkness. I am severely visually impaired, and the multiple factors and causes of that do make it difficult for people to figure out what I can or cannot see. I compensate for that already, so don’t ask for more.
The first cane suggestion was from the editor of a "disability culture" magazine who objected to my joke tagline that I do not use a cane because I am too afraid I will beat people with it when they persist in getting in my way anyway.
I think I disappointed the editor by not embracing the equipment and politics of the "disability culture." So far, while acknowledging my growing limitations and being as candid as possible about things, I have not let myself fall into whining, or succumbed to self pity. The most common way I have learned I cannot do things is by trying to do them. I have not internalized being blind or otherwise handicapped as part of my self concept.
Here in Rhode Island, it is considered discriminatory to state that an apartment being advertised is "in sight of" a landmark or "a short walk from" a bus stop or grocery store. I find that absurd. I have no expectation that the rest of the human race should be, or pretend to be, handicapped just because I and other people are. I forget the source–maybe an old Little River Band song?–but have always embraced a line that says something to the effect of "if the human race runs only as fast as the slowest runner, we get nowhere."
I just don’t buy into political correctness at the cost of frankness, and at this point in my existence as a gimp, a cane would be more of a label than a tool.
Sunday, July 8, 2012
Able without the Cane
My resistance or refusal to use a blind man’s cane may be stubbornness. I haven’t thought that much about it despite having a number of reasons, the most basic of which is that I do not feel the need for one. I don’t go out much, and seldom go out alone. I take reasonable care and rely on others and figure that prevents most mishaps that could happen.
Around the house as a happy recluse, the cane would have the effect of whacking the cat Sasquatch. He’s used to being kicked into and tripped over, and causes this himself by blending into most flooring and intentionally going for my ankles. I don’t know that he’d be as forgiving if he was being beaten with a stick. I generally navigate well through familiar areas and the moving obstacle Sasquatch prevents amounts to the only real hazard.
A cane seems like it would be a burden if I need both hands, like a purse that always needs to be watched or keys or glasses to be forgotten and lost when folded up.
The cane most emphatically will be of no help for the things I really need, like seeing where I put something down, telling me what aisle in the supermarket I am in, seeing the display on my cell phone or discerning the label on a can of vegetables.
There’s no gain of independence for me by using a cane. Theoretically, I could walk to the grocery store, but would not be able to see effectively to shop alone anyway. And the theoretical aside, I am a double gimp with bad eyes and a bad foot so I cannot make that walk on my own anyway. If and when the worst happens with the ankle, I cannot visualize self propelling my own wheelchair and swinging a cane out in front of me.
There is a deeper reason for my objection to cane use. The friends who took me to task about it recently mentioned that objection precisely, as a reason why I should use it: they said it would make things easier for other people to know I am blind.
I am something of a cynic. I figure that being burdened with a cane in public equates to having a target sign on my forehead. Capable-looking forty-somethings are not the typical targets of muggings and ATM robberies Criminals target easy marks, and openly advertising my blindness seems as though it would put me in that category.
Going even deeper, let me make a blanket complaint, perhaps even a bit of whining about my situation, something that I try to avoid even when talking about it in person or on the blog. While I push on and be as active of a person as I can, things are very difficult for me. I dealt with the blindness remarkably well before the Charcot foot rotted out my ankle. I could deal with the foot problem much better if I could actually clearly see where I was trying to walk. The two problems together don’t add, they multiply, yet I have not surrendered to useless helplessness. I do what I can for myself with what I have left. Sometimes I am remarkably successful and capable, but it is never easy and often not worth the effort after all is said and done.
The expectation, even the suggestion, that I should try even harder to make other people, including complete strangers, more comfortable with my disability really pisses me off. I suppose I should put that in a more polite or literary way, but that also is me compensating for things that may make other people more comfortable. There’s got to be a limit to that, and I choose clarity: The expectation that I try even harder to make others more comfortable with my disability really pisses me off.
Around the house as a happy recluse, the cane would have the effect of whacking the cat Sasquatch. He’s used to being kicked into and tripped over, and causes this himself by blending into most flooring and intentionally going for my ankles. I don’t know that he’d be as forgiving if he was being beaten with a stick. I generally navigate well through familiar areas and the moving obstacle Sasquatch prevents amounts to the only real hazard.
A cane seems like it would be a burden if I need both hands, like a purse that always needs to be watched or keys or glasses to be forgotten and lost when folded up.
The cane most emphatically will be of no help for the things I really need, like seeing where I put something down, telling me what aisle in the supermarket I am in, seeing the display on my cell phone or discerning the label on a can of vegetables.
There’s no gain of independence for me by using a cane. Theoretically, I could walk to the grocery store, but would not be able to see effectively to shop alone anyway. And the theoretical aside, I am a double gimp with bad eyes and a bad foot so I cannot make that walk on my own anyway. If and when the worst happens with the ankle, I cannot visualize self propelling my own wheelchair and swinging a cane out in front of me.
There is a deeper reason for my objection to cane use. The friends who took me to task about it recently mentioned that objection precisely, as a reason why I should use it: they said it would make things easier for other people to know I am blind.
I am something of a cynic. I figure that being burdened with a cane in public equates to having a target sign on my forehead. Capable-looking forty-somethings are not the typical targets of muggings and ATM robberies Criminals target easy marks, and openly advertising my blindness seems as though it would put me in that category.
Going even deeper, let me make a blanket complaint, perhaps even a bit of whining about my situation, something that I try to avoid even when talking about it in person or on the blog. While I push on and be as active of a person as I can, things are very difficult for me. I dealt with the blindness remarkably well before the Charcot foot rotted out my ankle. I could deal with the foot problem much better if I could actually clearly see where I was trying to walk. The two problems together don’t add, they multiply, yet I have not surrendered to useless helplessness. I do what I can for myself with what I have left. Sometimes I am remarkably successful and capable, but it is never easy and often not worth the effort after all is said and done.
The expectation, even the suggestion, that I should try even harder to make other people, including complete strangers, more comfortable with my disability really pisses me off. I suppose I should put that in a more polite or literary way, but that also is me compensating for things that may make other people more comfortable. There’s got to be a limit to that, and I choose clarity: The expectation that I try even harder to make others more comfortable with my disability really pisses me off.
Saturday, July 7, 2012
Raising Cane
I frequently hear the suggestion that I should be using a cane, not a walking cane for the bad foot, but one of those folding red and white rods for blind folk.
The most recent time I heard the suggestion was while out to dinner with two friends. He one who raised it had some legitimacy in doing so; I had admitted to him that while out with the other friend earlier that day, I had walked into a wall. The first friend was being slightly manipulative; he figured he could enlist the second friend to his cause. He also probably figured that the public restaurant setting would keep me quiet and the two people together would wear me down.
Dismissed the idea, as always do. That doesn’t mean I have not considered the concept; it means not now. The second friend is socially wiser than the first, issued his opinion then let the matter drop. The first friend pushed and got put down harder than might seem necessary, but experience has taught me that he will not stop on a subject until he gets his own way or gets figuratively slapped down.
He was not unwarranted in the concept. The day this had happened had been the second day in two months that I had walked into a wall, hard enough to bump my forehead. Maybe it will take a few more bumps to knock some sense in, but the specifics of each mishap don’t truly emphasize the need for a cane.
Both mishaps shared things in common:
I was in a public place.
The walls I walked into were soft colors that easily blend into the appearance of the foggy haze of "faded into the distance." Basically, from my visual perspective, it looked like nothing was there.
Both bumps were the first (perhaps overconfident) steps out from a standing position. Basically, I had stood still long enough and by my thoughts or conversation with the companions at the time, I had lost track of where or how I was standing. In other words, I had forgotten the walls were there and, having gotten turned to a wall that blended perfectly with my usual haze, took a first step into a solid barrier that ran from floor to ceiling.
Knocking on wood here, I have not yet actually tripped or walked into something while walking along.
In both these instances, the bump had been on the first step out from a standing position and had hit forehead first because my head was bowed while I made sure nothing would interfere with my gimpy feet. It’s not much different from walking into an open cabinet door or banging my head on something unexpected hanging down. Those types of mishaps have been more common, particularly in the first year of all this. During that first year, I was seldom without some type of bump or scrape on my forehead. I’ve adjusted to potential hazards better since then, and there’s not a one that a cane would have prevented.
Besides, watching someone walk into walls is amusing and feeling forward with a cane may not reveal the banana peel in my path.
The most recent time I heard the suggestion was while out to dinner with two friends. He one who raised it had some legitimacy in doing so; I had admitted to him that while out with the other friend earlier that day, I had walked into a wall. The first friend was being slightly manipulative; he figured he could enlist the second friend to his cause. He also probably figured that the public restaurant setting would keep me quiet and the two people together would wear me down.
Dismissed the idea, as always do. That doesn’t mean I have not considered the concept; it means not now. The second friend is socially wiser than the first, issued his opinion then let the matter drop. The first friend pushed and got put down harder than might seem necessary, but experience has taught me that he will not stop on a subject until he gets his own way or gets figuratively slapped down.
He was not unwarranted in the concept. The day this had happened had been the second day in two months that I had walked into a wall, hard enough to bump my forehead. Maybe it will take a few more bumps to knock some sense in, but the specifics of each mishap don’t truly emphasize the need for a cane.
Both mishaps shared things in common:
I was in a public place.
The walls I walked into were soft colors that easily blend into the appearance of the foggy haze of "faded into the distance." Basically, from my visual perspective, it looked like nothing was there.
Both bumps were the first (perhaps overconfident) steps out from a standing position. Basically, I had stood still long enough and by my thoughts or conversation with the companions at the time, I had lost track of where or how I was standing. In other words, I had forgotten the walls were there and, having gotten turned to a wall that blended perfectly with my usual haze, took a first step into a solid barrier that ran from floor to ceiling.
Knocking on wood here, I have not yet actually tripped or walked into something while walking along.
In both these instances, the bump had been on the first step out from a standing position and had hit forehead first because my head was bowed while I made sure nothing would interfere with my gimpy feet. It’s not much different from walking into an open cabinet door or banging my head on something unexpected hanging down. Those types of mishaps have been more common, particularly in the first year of all this. During that first year, I was seldom without some type of bump or scrape on my forehead. I’ve adjusted to potential hazards better since then, and there’s not a one that a cane would have prevented.
Besides, watching someone walk into walls is amusing and feeling forward with a cane may not reveal the banana peel in my path.
Thursday, July 5, 2012
Salvage Operation
Dr. Douglas Grod put a "salvage" operation process before me . Grod would replace the deteriorated bones with healthy cadaver bones. Then I would need recovery time, perhaps six months or longer, with some or even most of it in a recuperative nursing home.
Dr. Grod showed me the brace that would support the healing limb and make sure no weight ever pressured the foot after the surgery. The brace looked like an iron latticework, like the skeletal frame of a sewer pipe. The brace would have to be on for up to or even beyond six months and in many ways would be like scaffolding around the leg.
The brace would be attached to the leg via six or more wires or rods that would run directly through my leg for the duration of the healing process. The wires or rods would take any weight from the ankle and foot by transferring it to the metal frame.
I do not refer to the process as "Frankenstein-ish" because of the use of dead peoples’ bones. If I could get dead people’s eyes installed, I would without hesitation and wouldn’t even care if they were the same color as my old ones, or each other. The entire process just seemed too extreme, too much. Not enough potential chance of gain for the amount of risk and discomfort.
When I met with Dr. Grod, I was recovering from the toe infection and a horrific stay at another hospital. I could not see long term residency at a nursing home as a livable option for me, and the risk of infection was a prominent thought. After having a toe abrasion infect and gangrene in under three days, I would have no less than twelve points of metal protruding through my skin for a prolonged period.
If my body were to reject the foreign body parts inserted, they would have to redo the surgery, if replacement cadaver parts were readily available. Without such availability, I would be faced with automatic amputation.
I was never clear what shape my legs would be in compared to each other as cutting off the end of my tibia and doing a bone graft was also part of the process.
This option might have been more favorable if I were a young man who was losing a limb due to a car accident. I carefully considered this procedure before deciding against it. As a diabetic for close to forty years, I have too many other problems and too much risk of developing other problems including too much risk of infection for this risky proposition to seem practical.
I am permanently blind because PRP laser surgery that was supposed to prevent retinapathy caused retinapathy. Should I roll such dice again with the hopes of preventing amputation by doing a "pioneering" procedure that could cause the loss of the limb?
I have taken some big risks in my life, but this limb salvage plan will not number among them.
Dr. Grod showed me the brace that would support the healing limb and make sure no weight ever pressured the foot after the surgery. The brace looked like an iron latticework, like the skeletal frame of a sewer pipe. The brace would have to be on for up to or even beyond six months and in many ways would be like scaffolding around the leg.
The brace would be attached to the leg via six or more wires or rods that would run directly through my leg for the duration of the healing process. The wires or rods would take any weight from the ankle and foot by transferring it to the metal frame.
I do not refer to the process as "Frankenstein-ish" because of the use of dead peoples’ bones. If I could get dead people’s eyes installed, I would without hesitation and wouldn’t even care if they were the same color as my old ones, or each other. The entire process just seemed too extreme, too much. Not enough potential chance of gain for the amount of risk and discomfort.
When I met with Dr. Grod, I was recovering from the toe infection and a horrific stay at another hospital. I could not see long term residency at a nursing home as a livable option for me, and the risk of infection was a prominent thought. After having a toe abrasion infect and gangrene in under three days, I would have no less than twelve points of metal protruding through my skin for a prolonged period.
If my body were to reject the foreign body parts inserted, they would have to redo the surgery, if replacement cadaver parts were readily available. Without such availability, I would be faced with automatic amputation.
I was never clear what shape my legs would be in compared to each other as cutting off the end of my tibia and doing a bone graft was also part of the process.
This option might have been more favorable if I were a young man who was losing a limb due to a car accident. I carefully considered this procedure before deciding against it. As a diabetic for close to forty years, I have too many other problems and too much risk of developing other problems including too much risk of infection for this risky proposition to seem practical.
I am permanently blind because PRP laser surgery that was supposed to prevent retinapathy caused retinapathy. Should I roll such dice again with the hopes of preventing amputation by doing a "pioneering" procedure that could cause the loss of the limb?
I have taken some big risks in my life, but this limb salvage plan will not number among them.
Monday, July 2, 2012
To Build a Better Me
I debated with myself whether or not to name Doctor Douglas Grod outright. I liked him, personally and professionally. I would not hesitate to be treated by him again, if my regular foot doctor, Thomas Mancini, were to be unavailable. Grod had great bedside manner, though my cynical nature cannot separate the routine from the sales pitch. Mancini had recommended Grod because Grod might be willing to do more than any other local foot doctor would. Grod's approved bio indicates this at: http://www.rifootcare.com/douglas-j-glod.html
My hesitation to name him stems entirely that I chose not to go ahead with what Grod could offer. Mancini recommended Grod in large part because, as the site claims, Grod "has been able to pioneer techniques in limb salvage that few in Rhode Island or in the New England area have ventured."
By my experience and in opinion not exclusive to me, "pioneering" can be interpreted as "experimental." To put it in my blunt way that is the precise reason for my hesitation to outright name someone who I did judge to be a good doctor, the process put before me in May 2012 seemed freakishly Frankenstein-ish on more than one level.
My ankle is bad and will never fully recover. The Charcot condition resulted in the loss of bone density while the ankle was too swollen for healthy circulation to be possible. Without good blood flow ushering nutrients where they needed to be, I suffered bone density loss in the center of the ankle.
The chance of success was maybe 50/50. Failure would result in amputation. I give kudos to Dr. Grod for his brutal honesty; he tried to neither hide nor gloss over the risks. Unlike Dr. Dumbass, Dr. Grod did not rely on old X-rays or scans or other doctors’ appraisals of my condition to determine what he could do about it.
For reasons I will make clear in an upcoming post "Salvage Operation," I decided against this procedure.
I do, however, sincerely appreciate the opportunity to have been presented with the option in a fair and informative manner and been allowed to make up my own mind about it.
My hesitation to name him stems entirely that I chose not to go ahead with what Grod could offer. Mancini recommended Grod in large part because, as the site claims, Grod "has been able to pioneer techniques in limb salvage that few in Rhode Island or in the New England area have ventured."
By my experience and in opinion not exclusive to me, "pioneering" can be interpreted as "experimental." To put it in my blunt way that is the precise reason for my hesitation to outright name someone who I did judge to be a good doctor, the process put before me in May 2012 seemed freakishly Frankenstein-ish on more than one level.
My ankle is bad and will never fully recover. The Charcot condition resulted in the loss of bone density while the ankle was too swollen for healthy circulation to be possible. Without good blood flow ushering nutrients where they needed to be, I suffered bone density loss in the center of the ankle.
The chance of success was maybe 50/50. Failure would result in amputation. I give kudos to Dr. Grod for his brutal honesty; he tried to neither hide nor gloss over the risks. Unlike Dr. Dumbass, Dr. Grod did not rely on old X-rays or scans or other doctors’ appraisals of my condition to determine what he could do about it.
For reasons I will make clear in an upcoming post "Salvage Operation," I decided against this procedure.
I do, however, sincerely appreciate the opportunity to have been presented with the option in a fair and informative manner and been allowed to make up my own mind about it.
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