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.
Wednesday, January 18, 2012
Tuesday, January 17, 2012
Accentuating the Positive
Things are more difficult these days. Adding a bum ankle that could easily become permanently deformed after months of treatment hasn’t helped ease things along, but I am still hobbling along. Where I had been walking along slowly with hands usually defensively waving in front of me, you can add a limpy gimpy foot dragging behind me to get the image of an incredibly thin and good looking Igor shuffling around dark dungeons. Just don’t expect any "Yes, Master" responses because I’m way too insolent for that.
I need to look at the things I can do rather than concentrate on what I can do instead of all the things I can’t.
I can still bowl. As often as not, I am maintaining my average. It was never an impressive degree of sportsmanship and great fun on the rare occasion when a good score is in the same game as better teammates’ weak games. My tagline "You can’t bowl better than a blind guy is always worth a cheap laugh. The response is often "How many fingers am I holding up?" and the answer is always "One."
I changed locks at an apartment just the other day. This was rekeying on one door and a complete change on another, done all by myself by feel and experience.
Computer use is assisted with the use of a 32-inch TV as a monitor and a magnifying mouse. That too has gotten harder with time, but I am still plugging along for now, slowly.
I made program booklets for the bowling league bylaws, not just stapled sheets of a standard document but four page printed folded books in large type. I know they came out good because I was accused of having help.
I can still cook. Other than a dish towel falling into th oven unseen, I’ve had no mishaps any worse than things that happened due to sheer idiotic inattention. I washed my hand immediately after putting the turkey in the oven, so found the towel while it was still smoldering and before it had burst into flames.
I can still use power tools, with great caution. I never could cut a straight line, so the output isn’t radically changed. I stay cautious in keeping hands and other vital body parts away from the central blur that makes all the noise.
Power garden tools are no less difficult. I was swinging a chain saw in some clean up after Irene. I bought battery operated Hedge trimmers and a weed whacker. There’s two particular dangers I found the need to circumvent. The first trick is not moving my feet while the tool is in use. My reduced visual field makes that particularly dangerous as I am a living tripping hazard. The second was cutting through the cords of my old electric models. Don’t be shocked that I never did so.
Some of these things may seem haphazard, but in times when I find I can do less and less with more and more difficulty, they are accomplishments.
I need to look at the things I can do rather than concentrate on what I can do instead of all the things I can’t.
I can still bowl. As often as not, I am maintaining my average. It was never an impressive degree of sportsmanship and great fun on the rare occasion when a good score is in the same game as better teammates’ weak games. My tagline "You can’t bowl better than a blind guy is always worth a cheap laugh. The response is often "How many fingers am I holding up?" and the answer is always "One."
I changed locks at an apartment just the other day. This was rekeying on one door and a complete change on another, done all by myself by feel and experience.
Computer use is assisted with the use of a 32-inch TV as a monitor and a magnifying mouse. That too has gotten harder with time, but I am still plugging along for now, slowly.
I made program booklets for the bowling league bylaws, not just stapled sheets of a standard document but four page printed folded books in large type. I know they came out good because I was accused of having help.
I can still cook. Other than a dish towel falling into th oven unseen, I’ve had no mishaps any worse than things that happened due to sheer idiotic inattention. I washed my hand immediately after putting the turkey in the oven, so found the towel while it was still smoldering and before it had burst into flames.
I can still use power tools, with great caution. I never could cut a straight line, so the output isn’t radically changed. I stay cautious in keeping hands and other vital body parts away from the central blur that makes all the noise.
Power garden tools are no less difficult. I was swinging a chain saw in some clean up after Irene. I bought battery operated Hedge trimmers and a weed whacker. There’s two particular dangers I found the need to circumvent. The first trick is not moving my feet while the tool is in use. My reduced visual field makes that particularly dangerous as I am a living tripping hazard. The second was cutting through the cords of my old electric models. Don’t be shocked that I never did so.
Some of these things may seem haphazard, but in times when I find I can do less and less with more and more difficulty, they are accomplishments.
Monday, January 16, 2012
Waking to the New World
Sometimes I wake very leisurely. The morning of the vitreous hemorrhage had been like that, a relaxed morning where I did not open my eyes right away. On mornings like that, I sit in bed with closed eyes as sunlight streams on my face from the skylight.
My mind usually starts up faster than my body does, and I often don’t rush the body to catch up. I sir and think of the active to do list and the week’s agenda and the backburner things I could get done.
The morning of the hemorrhage, more than two years ago now, the sudden appearance of flowing darkness that cast a shadow behind my eyelid brought instant sharp focus to my mind.
These days, my mind wanders. I review all the things I could do, all the things I have not gotten done.
I had roughly sketched out a series of closely-linked short stories yet have not written even one. There’s editing to my main novel-length works that I could exercise with. There’S three longer short stories I could work towards completion. The cycle of submissions to editors never ends.
The stonewash treatment to the hallway next door had remain incomplete for ages. Other things at the properties need tweaking or improving. The yard needs attention, and there’s always a mound of neglected paperwork on my desk.
The seasonal or occasional jobs around the house are also typically neglected. I think of the elderly, incompetent neighbor I had helped a few years back. I had redone her floors because I did not think the state would let her back into her home if the splits and corroded areas posed tripping hazards. Within a few months, layers of dust and dirt crept out from the walls, anywhere her housecoat did not sweep, and I wonder if my floors look like that.
So I will wake and keep my eyes closed and think of everything I could do and should do and have let slide for so long. I start to chide myself for being so lazy and wonder why I’ve let myself get like that and stay like that for so long.
Then, ready for a manic-depressive push of activity for the day, I open my eyes and remember why. The room won’t come into focus through hazes of fog and light. The doorframes are jagged with edges that will probably never be sharply defined again. I move slowly and must stop at both the top and the bottom of the stairs to make sure I have the footing right. At certain times of day that change seasonably, I need to stop when blasts of sunlight strobe my eyes with sharp contrasts that require "unreasonable" focus readjustment times.
I realize that I haven’t let my hidden lazy streak win. There’s so many things I could do, but not very well by my own standards. There’s things I just can’t do.
The rest is just so damn difficult.
My mind usually starts up faster than my body does, and I often don’t rush the body to catch up. I sir and think of the active to do list and the week’s agenda and the backburner things I could get done.
The morning of the hemorrhage, more than two years ago now, the sudden appearance of flowing darkness that cast a shadow behind my eyelid brought instant sharp focus to my mind.
These days, my mind wanders. I review all the things I could do, all the things I have not gotten done.
I had roughly sketched out a series of closely-linked short stories yet have not written even one. There’s editing to my main novel-length works that I could exercise with. There’S three longer short stories I could work towards completion. The cycle of submissions to editors never ends.
The stonewash treatment to the hallway next door had remain incomplete for ages. Other things at the properties need tweaking or improving. The yard needs attention, and there’s always a mound of neglected paperwork on my desk.
The seasonal or occasional jobs around the house are also typically neglected. I think of the elderly, incompetent neighbor I had helped a few years back. I had redone her floors because I did not think the state would let her back into her home if the splits and corroded areas posed tripping hazards. Within a few months, layers of dust and dirt crept out from the walls, anywhere her housecoat did not sweep, and I wonder if my floors look like that.
So I will wake and keep my eyes closed and think of everything I could do and should do and have let slide for so long. I start to chide myself for being so lazy and wonder why I’ve let myself get like that and stay like that for so long.
Then, ready for a manic-depressive push of activity for the day, I open my eyes and remember why. The room won’t come into focus through hazes of fog and light. The doorframes are jagged with edges that will probably never be sharply defined again. I move slowly and must stop at both the top and the bottom of the stairs to make sure I have the footing right. At certain times of day that change seasonably, I need to stop when blasts of sunlight strobe my eyes with sharp contrasts that require "unreasonable" focus readjustment times.
I realize that I haven’t let my hidden lazy streak win. There’s so many things I could do, but not very well by my own standards. There’s things I just can’t do.
The rest is just so damn difficult.
Thursday, January 12, 2012
Guilt and Perfection
Those closer in a diabetic’s life have cause to nag sometimes when the diabetic lapses on some things in their care. The nagging questions can be ceaseless. The mutual care makes patience with the nag a necessity.
There’s a big difference between the beloved relatives and respected friends and people who just want to be bossy or show how much they know about the diabetic condition. There’s always a control freak aspect to all the unwanted advice. I don’t have much patience for the latter, and have no tolerance for it. Usually those displaying their knowledge are only showing me how much they don’t know.
The breadth of true full diabetic care is more ceaseless than the nagging. It’s not just a diabetic diet and "you shouldn’t eat that or this or when to take insulin and how much or exercise concerns. A proper range of medical appointments exceeds the personal days most employees receive. Extra time and care need to be paid daily to feet and toes, teeth, skin and eyes. Proper meal preparation is more expensive than for a "healthy" person. All food should be properly weighed and prepared. A dinner out is all but guaranteed to alter the routine and needs extra compensation. The testing a medication intake should be constant. Being sick with a routine illness need longer recovery times and overcompensation in daily care. The details of everything a diabetic needs to do form an endless list that I could not cover in one post and at least at this time have no interest in doing a series about. It gets so minute and specific as to sound like parody. A diabetic should never wipe themselves dry from a shower, but instead should always gently pat themselves dry while checking the skin for cuts or lesions that they may not feel.
Maybe there are diabetics out there who can do all that. I haven’t met any and I am not one of them.
Living the diabetic lifestyle is not just endless, but is pretty much impossible to do. The lifestyle is a constant compromise from impossible pursuit of perfection. Most feel twinges of guilt for most infractions of good diabetic rules. The nagging only compounds the guilt. Whatever lapse triggered the nag is probably hard to argue because the nag is most likely right, so the chance that the naughty diabetic cheats and sneaks as if a scoop of ice cream is an illicit lover increases. Heightened guilty feeling are then likely to escalate.
Diabetes is not a situation of a willing diet where the diabetic can forestall cheating by rewarding himself when a weight loss goal is finally achieved. It is the pursuit of perfection that will never end.
Those close enough to have legitimate standing be scold the infractions should choose their battles.
Those who for whatever reason think it’s okay to scold, question, correct and advise despite a lack of genuine standing in the diabetic’s life just need to shut up.
There’s a big difference between the beloved relatives and respected friends and people who just want to be bossy or show how much they know about the diabetic condition. There’s always a control freak aspect to all the unwanted advice. I don’t have much patience for the latter, and have no tolerance for it. Usually those displaying their knowledge are only showing me how much they don’t know.
The breadth of true full diabetic care is more ceaseless than the nagging. It’s not just a diabetic diet and "you shouldn’t eat that or this or when to take insulin and how much or exercise concerns. A proper range of medical appointments exceeds the personal days most employees receive. Extra time and care need to be paid daily to feet and toes, teeth, skin and eyes. Proper meal preparation is more expensive than for a "healthy" person. All food should be properly weighed and prepared. A dinner out is all but guaranteed to alter the routine and needs extra compensation. The testing a medication intake should be constant. Being sick with a routine illness need longer recovery times and overcompensation in daily care. The details of everything a diabetic needs to do form an endless list that I could not cover in one post and at least at this time have no interest in doing a series about. It gets so minute and specific as to sound like parody. A diabetic should never wipe themselves dry from a shower, but instead should always gently pat themselves dry while checking the skin for cuts or lesions that they may not feel.
Maybe there are diabetics out there who can do all that. I haven’t met any and I am not one of them.
Living the diabetic lifestyle is not just endless, but is pretty much impossible to do. The lifestyle is a constant compromise from impossible pursuit of perfection. Most feel twinges of guilt for most infractions of good diabetic rules. The nagging only compounds the guilt. Whatever lapse triggered the nag is probably hard to argue because the nag is most likely right, so the chance that the naughty diabetic cheats and sneaks as if a scoop of ice cream is an illicit lover increases. Heightened guilty feeling are then likely to escalate.
Diabetes is not a situation of a willing diet where the diabetic can forestall cheating by rewarding himself when a weight loss goal is finally achieved. It is the pursuit of perfection that will never end.
Those close enough to have legitimate standing be scold the infractions should choose their battles.
Those who for whatever reason think it’s okay to scold, question, correct and advise despite a lack of genuine standing in the diabetic’s life just need to shut up.
Wednesday, January 11, 2012
Wise Don't Need and Fools Won't Heed
Inspired by the sight of such a young guy crippled by poor eyesight and a cast-boot on my foot, some old fart approached me in Wal-Mart the other day. You know the type, a clever old guy, in his own mind. He asked if I kicked someone to hurt my foot. Trying to adopt a kinder and gentler persona in my gimpiness, I did not say, "no, nut I’m going to hurt the other one kicking you." Marginal friendliness was enough to get the old guy talking, about the boot-cast and foot injuries. He was full of unsolicited advice of the most generic sorts. I finally asked him if he had ever heard of Charcot Foot and when he said "no," I was ready with "Then you shouldn’t give advice about things you know nothing about, should you?"
His further attempts at medical talk after that just irritated me more. He was sharp enough to add together foot injury and blind fool to equal diabetic, and to see that his advice to a surly diabetic was only increasing the surly part and retreated politely. The conversation never crossed the rude threshold. As long as he was going to spend it away from me, I could unbegrudgingly wish him a food day.
So why exactly is it that people feel a need to start offering advice to strangers without knowing a thing about the strangers’ situations? Even acquaintances do this. The answer to a casual question "het, what happened?" invites all sorts of unwanted advice, especially from the elderly. Maybe elderly folk liking to talk about their maladies, but that’s not an interest I share. I don’t particularly want people meeting my club foot story with their history of bunions or topping my blind story with tales of their prostate
Those who offer unsolicited advice about diabetes are even worse. There’s more and more diabetes experts out there now that Type 2 is epidemic due to lifestyles of the lifestyles of rich foods and Famous Amos.
I don’t know it all so don’t mean to sound arrogant, but I readily research "new" things I hear about. As for the older things...I have been diabetic since I was four years old There’s a lot of practical living experience in that time. It’s just not very likely that a newly diagnosed Type 2–or worse, someone whose spouse/parent/brother was newly diagnosed–will be able tp give advice that I haven’t heard before. I attended a learning class on diabetes just a few years ago, and most of the pudgy old new Type 2’s in the class thought they learned more from me than the pharmacist, nurse and nutritionist who were running the class. But I’m sure that was just me being a disruptive asset to the class.
The diabetes advisors are tougher for me to deal with. If they know I am diabetic, they are not some lonely old guy cruising the aisles of Wal-Mart for conversation. They are more likely acquaintances, or worse, friends who are sticking their noses in with the best of intentions. They give me practice with that kinder and gentler persona that does not seem to come naturally to me. They act as advisors and food police. Few understand the differences between Type 2 and juvenile diabetes, the true breadth of the condition or the endless and impossible pursuit of lifestyle perfection that very few diabetics can ever achieve and are usually feeling guilty about every failure.
His further attempts at medical talk after that just irritated me more. He was sharp enough to add together foot injury and blind fool to equal diabetic, and to see that his advice to a surly diabetic was only increasing the surly part and retreated politely. The conversation never crossed the rude threshold. As long as he was going to spend it away from me, I could unbegrudgingly wish him a food day.
So why exactly is it that people feel a need to start offering advice to strangers without knowing a thing about the strangers’ situations? Even acquaintances do this. The answer to a casual question "het, what happened?" invites all sorts of unwanted advice, especially from the elderly. Maybe elderly folk liking to talk about their maladies, but that’s not an interest I share. I don’t particularly want people meeting my club foot story with their history of bunions or topping my blind story with tales of their prostate
Those who offer unsolicited advice about diabetes are even worse. There’s more and more diabetes experts out there now that Type 2 is epidemic due to lifestyles of the lifestyles of rich foods and Famous Amos.
I don’t know it all so don’t mean to sound arrogant, but I readily research "new" things I hear about. As for the older things...I have been diabetic since I was four years old There’s a lot of practical living experience in that time. It’s just not very likely that a newly diagnosed Type 2–or worse, someone whose spouse/parent/brother was newly diagnosed–will be able tp give advice that I haven’t heard before. I attended a learning class on diabetes just a few years ago, and most of the pudgy old new Type 2’s in the class thought they learned more from me than the pharmacist, nurse and nutritionist who were running the class. But I’m sure that was just me being a disruptive asset to the class.
The diabetes advisors are tougher for me to deal with. If they know I am diabetic, they are not some lonely old guy cruising the aisles of Wal-Mart for conversation. They are more likely acquaintances, or worse, friends who are sticking their noses in with the best of intentions. They give me practice with that kinder and gentler persona that does not seem to come naturally to me. They act as advisors and food police. Few understand the differences between Type 2 and juvenile diabetes, the true breadth of the condition or the endless and impossible pursuit of lifestyle perfection that very few diabetics can ever achieve and are usually feeling guilty about every failure.
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?.
Friday, January 6, 2012
Diabetic Complications: Fun and Games
Here’s a list of things that are common afflictions to diabetes. Some, such a neuropathy and retinapathy, are all but inevitable first-level body reactions. Others develop as a result of first-level complications and just further debilitate or aggravate or frustrate. Sone develop from the diabetes effects then in turn affects the diabetes itself.
The entire cycle would make a great board game for eager little diabetic children. Players could lose turns for developing ailments, and the tokens could have removable body parts to signify losses and setbacks. Actions such as "You are gassy today; the nearest player to you goes back three spaces" and "you are hyperactive with birthday cake: advance four spaces then lose a turn for the hyperglycemia shock that follows" and "eating that candy caused your toe to be amputated; for the rest of the game you move only half the spaces you roll" would make this a great interactive game between players.
The list of ailments is comprehensive but surely incomplete.
Depression
reduced circulation
blindness
peripheral neuropathy
autonomic neuropathy).
retinapathy
cataracts
Glaucoma.
Macular edema.
Hearinf loss
periodontal disease
gingivitis
atherosclerosis
bacteiial infection susceptibility
increased infection risk
high blood pressure
high cholesterol
heart disease
heart attack
stroke
Congestive heart failure
Endothelial dysfunction
erectile dysfunction
liver complications
kidney failure
thyroid disease
celiac disease
gastrointestinal problems
gastroparesis
Nonalcoholic steatohepatitis
hormonal imbalance
dehydration
fungal infection
Diabetic dermopathyAcanthosis nigricans
Eruptive xanthomatosis
Bullosis diabeticorum
Necrobiosis Lipoidica
Flexor Tenosynovitis
Carpal Tunnel
Frozen Shoulder
Diabetic stiff hands syndrome
Charcot foot
Achilles Tendinitis
Neuromas
Sesamoiditis
Neurogenic Bladder
Nerve Decompression
Insomnia
sleep apnea
Restless Leg Syndrome
Narcolepsy
Please, no guesses as to what afflictions I suffer but don’t gripe about, and no betting pools to which ones I develop next.
The entire cycle would make a great board game for eager little diabetic children. Players could lose turns for developing ailments, and the tokens could have removable body parts to signify losses and setbacks. Actions such as "You are gassy today; the nearest player to you goes back three spaces" and "you are hyperactive with birthday cake: advance four spaces then lose a turn for the hyperglycemia shock that follows" and "eating that candy caused your toe to be amputated; for the rest of the game you move only half the spaces you roll" would make this a great interactive game between players.
The list of ailments is comprehensive but surely incomplete.
Depression
reduced circulation
blindness
peripheral neuropathy
autonomic neuropathy).
retinapathy
cataracts
Glaucoma.
Macular edema.
Hearinf loss
periodontal disease
gingivitis
atherosclerosis
bacteiial infection susceptibility
increased infection risk
high blood pressure
high cholesterol
heart disease
heart attack
stroke
Congestive heart failure
Endothelial dysfunction
erectile dysfunction
liver complications
kidney failure
thyroid disease
celiac disease
gastrointestinal problems
gastroparesis
Nonalcoholic steatohepatitis
hormonal imbalance
dehydration
fungal infection
Diabetic dermopathyAcanthosis nigricans
Eruptive xanthomatosis
Bullosis diabeticorum
Necrobiosis Lipoidica
Flexor Tenosynovitis
Carpal Tunnel
Frozen Shoulder
Diabetic stiff hands syndrome
Charcot foot
Achilles Tendinitis
Neuromas
Sesamoiditis
Neurogenic Bladder
Nerve Decompression
Insomnia
sleep apnea
Restless Leg Syndrome
Narcolepsy
Please, no guesses as to what afflictions I suffer but don’t gripe about, and no betting pools to which ones I develop next.
Thursday, January 5, 2012
Juvenile Diabetes Research Foundation
I maintain that diabetes is curable, but that there is no real-world motivation to do so. I don’t call the obstacles "political;" they are clearly economic.
I am talking "juvenile" diabetes here, also known as Type 1 or diabetes mellitus.
Type 2 diabetes is an effect of old age or overuse of the pancreas that weakens the organ just as age and less-than-ideal use can wear out any other body part. My definition of overuse stems from the fact that obese people, including children these days, overtax the pancreas with bad diet and obesity.
In true juvenile diabetes, the cause roots to basic organ failure. The pancreas stops producing the blood-sugar regulating hormone known as insulin.
I looked over the "Cure" page on the Juvenile Diabetes Research Foundation website, at
http://www.jdrf.org/index.cfm?page_id=101980
Note that the web page address does not even include the word "cure."
This cure page does not discuss possibilities of organ transplants, islet replacement or cellular stimulation. It does not delve into specific theories on correcting the "misguided" immune response. Instead, it offers vague excuses why they have such difficulty finding a cure.
Call me cynical, but I read nothing on that very short page about the JDRF actively searching for a cure. The focus throughout the entire web site is treatment options and new therapies, not a cure.
I read "need to find ways to turn off the misguided immune system attack on the insulin-producing beta cells" and I see research geared towards a profitable vaccine that will make a pharmaceutical company gobs of money.
I read "need to find a way to restore the body's ability to produce its own insulin" and I can think of other ways to do this beyond the two they mention. The cure page mentioned nowhere how the pancreas regulates blood sugars as well as produces insulin.
From there, the web page launches into a discussion of identifying markers for Type 1 Diabetes and tracking the existing disease’s response to new therapies. This does not sound like cure research to me. It’s more vaccination research, and further research into new, patent-able drugs to treat those already afflicted, which will also make the lucky pharmaceuticals gobs of money.
The BS doesn’t end there. "Identifying appropriate subjects for clinical trials: is touted as an obstacle to research when it’s as easy as buying the BD, One-Touch Ultra and Ely Lilly mailing lists for new products.
"Providing endpoints of effectiveness" is as easy as seeing if the patient’s body is producing its own insulin after the trial.
Another page on the JDRF site, well buried under the "for scientists" section is
http://www.jdrf.org/index.cfm?page_id=111304
This page claims outright, "The biotechnology and pharmaceutical industries are an integral, vital, and growing part of the search for a cure" and touts how "both pharmaceutical and biotechnology companies to accelerate the discovery, development, and commercialization of disease-modifying therapeutics and devices to better treat and cure." The search for better ways to treat is a certainty. The pharmaceuticals certainly desire the "commercialization" of diabetes. Curing diabetes is contrary to the pharmaceuticals’ best interests of commercialization.
It doesn’t seem to take too much reading to see the reality of the JDRF and similar organizations. They are the pharmaceuticals’ bitches.
There will be no cure until that fact changes.
I am talking "juvenile" diabetes here, also known as Type 1 or diabetes mellitus.
Type 2 diabetes is an effect of old age or overuse of the pancreas that weakens the organ just as age and less-than-ideal use can wear out any other body part. My definition of overuse stems from the fact that obese people, including children these days, overtax the pancreas with bad diet and obesity.
In true juvenile diabetes, the cause roots to basic organ failure. The pancreas stops producing the blood-sugar regulating hormone known as insulin.
I looked over the "Cure" page on the Juvenile Diabetes Research Foundation website, at
http://www.jdrf.org/index.cfm?page_id=101980
Note that the web page address does not even include the word "cure."
This cure page does not discuss possibilities of organ transplants, islet replacement or cellular stimulation. It does not delve into specific theories on correcting the "misguided" immune response. Instead, it offers vague excuses why they have such difficulty finding a cure.
Call me cynical, but I read nothing on that very short page about the JDRF actively searching for a cure. The focus throughout the entire web site is treatment options and new therapies, not a cure.
I read "need to find ways to turn off the misguided immune system attack on the insulin-producing beta cells" and I see research geared towards a profitable vaccine that will make a pharmaceutical company gobs of money.
I read "need to find a way to restore the body's ability to produce its own insulin" and I can think of other ways to do this beyond the two they mention. The cure page mentioned nowhere how the pancreas regulates blood sugars as well as produces insulin.
From there, the web page launches into a discussion of identifying markers for Type 1 Diabetes and tracking the existing disease’s response to new therapies. This does not sound like cure research to me. It’s more vaccination research, and further research into new, patent-able drugs to treat those already afflicted, which will also make the lucky pharmaceuticals gobs of money.
The BS doesn’t end there. "Identifying appropriate subjects for clinical trials: is touted as an obstacle to research when it’s as easy as buying the BD, One-Touch Ultra and Ely Lilly mailing lists for new products.
"Providing endpoints of effectiveness" is as easy as seeing if the patient’s body is producing its own insulin after the trial.
Another page on the JDRF site, well buried under the "for scientists" section is
http://www.jdrf.org/index.cfm?page_id=111304
This page claims outright, "The biotechnology and pharmaceutical industries are an integral, vital, and growing part of the search for a cure" and touts how "both pharmaceutical and biotechnology companies to accelerate the discovery, development, and commercialization of disease-modifying therapeutics and devices to better treat and cure." The search for better ways to treat is a certainty. The pharmaceuticals certainly desire the "commercialization" of diabetes. Curing diabetes is contrary to the pharmaceuticals’ best interests of commercialization.
It doesn’t seem to take too much reading to see the reality of the JDRF and similar organizations. They are the pharmaceuticals’ bitches.
There will be no cure until that fact changes.
Wednesday, January 4, 2012
Diabetic Complications: Charcot Foot
The foot problem that developed this past Autumn is another complication of diabetes called Charcot Foot. The condition name is French and the French can’t spell, so it’s pronounced "Sharko foot."
Being a blind fool, I kicked into something hard. The foot became swollen and painful but I had full movement and strength. My GP told me to wrap it but determined nothing was broken and casually gave me an X-Ray referral.
Wrapping it caused the swelling to drastically increase and spread up to the knee. This was something beyond normal fluid swelling, thick matter under the skin. I can press into it with a finger and a dent remains behind as if I had poked into clay.
The X-rays revealed nothing broken, nor did MRIs. The sports medicine doctor prescribed an immobilization boot anyway.
I’m contrary to the Charcot statistics just as some people tell me I’m contrary to most everything. I have pain in the foot and did from the original injury. Nothing is fractured or broken. My neuropathy is not as advanced as most Charcot patients’; many when diagnosed remain unaware of the catalyzing injury, which often leads their doctors to mistakenly treat the swelling as a massive infection.
I do have the traditional signs of massive swelling and elevated foot temperature. The swelling is part of what is a prolonged healing process. Most patients get worse if their doctors treat the swelling, so my GP and the urgent care doctor did things right by denying my requests for treatment of that aspect. The absolute worst thing a doctor could have done is puncture the foot to release the fluid; infection would have been more than likely and created further complications that could be a fast track to amputation.
The boot is preventative only, but I have been diligent in wearing it. A common subsequent malady is foot ulcers formed by damaged bones popping out from beneath the skin when the patient does not immobilize and rest the foot. Even if patients do not progress so far, such skin ulcers easily lead to amputation. Permanently malformed feet often develop as fractured bones grow out of place.
I seem to have inflicted a non-neuropathy level of nerve damage in the foot. I can touch one area of the foot to produce a burn, pain or spasm in a seemingly unrelated part of the foot. Other times little spasms start on their own and make it feel as though there is a writhing mouse in the boot. I call over a cat just in case, but the increased temperature of a foot restrained to a heavy boot produces a smell that the cats don’t care for.
The healing process is a careful wait-it-out routine. Artificial reduction of the swelling is likely to cause infection, but the prolonged state of swelling can cause impair calcium and nutrient distribution. This can also malform bone structure. The immobilizing boot and elevation are both important.
This has naturally further diminished my capacity to do anything and has only added to my frustration and boredom and thus to my edgy disposition.
I think I was lucky when the sports medicine place prescribed the boot. Most places I go, I get a boot square in the ass. There, they tenderly placed it on my foot.
Being a blind fool, I kicked into something hard. The foot became swollen and painful but I had full movement and strength. My GP told me to wrap it but determined nothing was broken and casually gave me an X-Ray referral.
Wrapping it caused the swelling to drastically increase and spread up to the knee. This was something beyond normal fluid swelling, thick matter under the skin. I can press into it with a finger and a dent remains behind as if I had poked into clay.
The X-rays revealed nothing broken, nor did MRIs. The sports medicine doctor prescribed an immobilization boot anyway.
I’m contrary to the Charcot statistics just as some people tell me I’m contrary to most everything. I have pain in the foot and did from the original injury. Nothing is fractured or broken. My neuropathy is not as advanced as most Charcot patients’; many when diagnosed remain unaware of the catalyzing injury, which often leads their doctors to mistakenly treat the swelling as a massive infection.
I do have the traditional signs of massive swelling and elevated foot temperature. The swelling is part of what is a prolonged healing process. Most patients get worse if their doctors treat the swelling, so my GP and the urgent care doctor did things right by denying my requests for treatment of that aspect. The absolute worst thing a doctor could have done is puncture the foot to release the fluid; infection would have been more than likely and created further complications that could be a fast track to amputation.
The boot is preventative only, but I have been diligent in wearing it. A common subsequent malady is foot ulcers formed by damaged bones popping out from beneath the skin when the patient does not immobilize and rest the foot. Even if patients do not progress so far, such skin ulcers easily lead to amputation. Permanently malformed feet often develop as fractured bones grow out of place.
I seem to have inflicted a non-neuropathy level of nerve damage in the foot. I can touch one area of the foot to produce a burn, pain or spasm in a seemingly unrelated part of the foot. Other times little spasms start on their own and make it feel as though there is a writhing mouse in the boot. I call over a cat just in case, but the increased temperature of a foot restrained to a heavy boot produces a smell that the cats don’t care for.
The healing process is a careful wait-it-out routine. Artificial reduction of the swelling is likely to cause infection, but the prolonged state of swelling can cause impair calcium and nutrient distribution. This can also malform bone structure. The immobilizing boot and elevation are both important.
This has naturally further diminished my capacity to do anything and has only added to my frustration and boredom and thus to my edgy disposition.
I think I was lucky when the sports medicine place prescribed the boot. Most places I go, I get a boot square in the ass. There, they tenderly placed it on my foot.
Tuesday, January 3, 2012
Fighting the Growing Night
Essentially, I am blind because I am diabetic, going on 40 years now. It just catches up to you, I could say. I have not lived the life of a bad diabetic all these years, something guaranteed to hasten multiple problems and complications. For me, diabetes had been less of a direct cause and more of an opportunistic leech ever ready to suck away and complicate anything it could.
The right eye’s been blind since 2003. I coped and adjusted to that fairly well. I did not leave a minor cornea abrasion covered long enough. They eye began looking around the temporary obstruction. When that happened, my eye muscles pulled out of place, it permanently peeled the retina off the back of the eye, opportunistic of old damage. I retain a pinhole of vision in the right eye, but that is obscured by a dense cataract and that the muscle damage does not allow my brain to properly direct the eye.
The left eye is even more complicated. Like with the right eye, there was old but stable diabetic non-proliferative retinapathy.
The stable situation changed in 2009 when I took a dose of Cialis. The boner pull caused a massive blood hemorrhage in my good eye. Levitra or Viagra could have done the same thing.
In seeking treatment, cataract surgery would be necessary as the cataract was now filled with blood. Doctors scared into doing PRP laser treatment to "prevent advancement of retinapathy."
Cataract surgery can trigger proliferative retinapathy. I was not told that.
The PRP treatment can also increase risk of advanced retinapathy and is almost guaranteed to reduce peripheral vision. I wasn’t told that either. I had forestalled PRP treatment for two decades. The doctors told me that retinapathy, not boner pulls, caused the blood gushing hemorrhage. I knew it was Cialis, but I am not arrogant enough to not doubt that the doctors might be right.
Flashes of light, aptly called "flashers," started after the third PRP session. Flashers are a certain sign of full blown retinapathy, where the retina begins to detach.
I was not given a choice in cataract lenses because my doctor knew what was best for me. The new lense killed my reading vision.
The PRP ended after six sessions. Peripteral began receding almost immediately.
I had also not been told that what I had suffered was a vitreous hemorrhage. I had expected the cataract surgery to clear the obstruction of ruddy blood fog. Instead I learned that an entire other pool of blood remained in the center of the eye.
My vision darkened to the edges of the cataract lense as the eye absorbed the vitreous contamination. I coped with this remarkably well, until scar tissue and further retinapathy issues further eroded my remaining vision. The vitreous remained filled with clouds and floaters that accumulated into a still-thickening veil of darkness. The obstruction within my eye inhibits my pupil from working correctly and obscures most color vision.
The retinapathy has advanced beyond the cataract. I have at least one dead spot in my central vision. Now reading is impossible not just for worsening focus issues, but because I really can’t see a set of letters as an entire cohesive word.
I’m still coping, but maybe not as well. The fight to retain any self sufficiency has become a nonstop battle that I can’t seem to win.
I’m conjuring my adolescence, when I didn’t let impossible odds stop me from fighting on.
The right eye’s been blind since 2003. I coped and adjusted to that fairly well. I did not leave a minor cornea abrasion covered long enough. They eye began looking around the temporary obstruction. When that happened, my eye muscles pulled out of place, it permanently peeled the retina off the back of the eye, opportunistic of old damage. I retain a pinhole of vision in the right eye, but that is obscured by a dense cataract and that the muscle damage does not allow my brain to properly direct the eye.
The left eye is even more complicated. Like with the right eye, there was old but stable diabetic non-proliferative retinapathy.
The stable situation changed in 2009 when I took a dose of Cialis. The boner pull caused a massive blood hemorrhage in my good eye. Levitra or Viagra could have done the same thing.
In seeking treatment, cataract surgery would be necessary as the cataract was now filled with blood. Doctors scared into doing PRP laser treatment to "prevent advancement of retinapathy."
Cataract surgery can trigger proliferative retinapathy. I was not told that.
The PRP treatment can also increase risk of advanced retinapathy and is almost guaranteed to reduce peripheral vision. I wasn’t told that either. I had forestalled PRP treatment for two decades. The doctors told me that retinapathy, not boner pulls, caused the blood gushing hemorrhage. I knew it was Cialis, but I am not arrogant enough to not doubt that the doctors might be right.
Flashes of light, aptly called "flashers," started after the third PRP session. Flashers are a certain sign of full blown retinapathy, where the retina begins to detach.
I was not given a choice in cataract lenses because my doctor knew what was best for me. The new lense killed my reading vision.
The PRP ended after six sessions. Peripteral began receding almost immediately.
I had also not been told that what I had suffered was a vitreous hemorrhage. I had expected the cataract surgery to clear the obstruction of ruddy blood fog. Instead I learned that an entire other pool of blood remained in the center of the eye.
My vision darkened to the edges of the cataract lense as the eye absorbed the vitreous contamination. I coped with this remarkably well, until scar tissue and further retinapathy issues further eroded my remaining vision. The vitreous remained filled with clouds and floaters that accumulated into a still-thickening veil of darkness. The obstruction within my eye inhibits my pupil from working correctly and obscures most color vision.
The retinapathy has advanced beyond the cataract. I have at least one dead spot in my central vision. Now reading is impossible not just for worsening focus issues, but because I really can’t see a set of letters as an entire cohesive word.
I’m still coping, but maybe not as well. The fight to retain any self sufficiency has become a nonstop battle that I can’t seem to win.
I’m conjuring my adolescence, when I didn’t let impossible odds stop me from fighting on.
Monday, January 2, 2012
Elderly Adolescence
I have entered what I call "elderly adolescence." I’m 42. Most people my age are dealing with parents in the elderly adolescent phase, not being the bratty cripple themselves. Simply put, "elderly adolescence" is that phase of declining ability when old folk overstep their bounds and feel capable of continuing things they used to do. They get rebellious and insolent when someone resets or reduces the boundaries. As teenagers feel more capable than limited life experience has prepared them to actually be, in the elderly version the troublesome imp hasn’t readjusted to decreasing mental and/or physical limitations. My limits are physical only, and that’s part of the problem. I’m still too sharp for my own good. The rebellion rooted in combination and culmination of the physical limitations of being blind and what could be permanent foot damage called Charcot foot, and multi-front psychological crises of a very stressful period since Thanksgiving.
The very last time behind the wheel was just sheer reactionary rebellion. I only went to 7-11 six blocks from my house, but that’s left of my house and on the nearest controlled intersection, so I went the longer roundabout way of multiple right hand turns. These days, every flasher and floater lends me to see things that aren’t there and potentially miss things that are actually there. It was a jumpy stressful experience that I should not have undergone.
The physical and personal stresses of life that week and during the preceding one had just made something snap. I needed to get out, to do something for myself and by myself. Due to the Charcot foot, walking is no real option for me either. I didn’t want to call someone or particularly even talk to anyone that day. It was something I "needed" to do that day, as wrong as it was.
Nothing came of the experience. My "handlers" don’t know about it. Nothing got hit and no one got hurt, but I was jumping at shadows the entire time. It didn’t relieve any stressand probably raised the blood pressure for the day. I repeated this is a bad idea" for every ten feet the jeep rolled along.
I completed the errand and sat in the driveway behind the wheel for quite a while afterwards, trying to ingrain the stress I felt for the drive in order to force acceptance that I couldn’t do it again.
I have stopped driving. My elderly adolescence phase has not fully passed, but has gained enough of an angry, insolent edge that I will take all comers head on rather than sneak around. That’s more my style anyway. No one needs to take the keys, even if they could find all sets. The jeep is more unwieldy now anyway; it’s set up with the full plow rig for the winter.
The very last time behind the wheel was just sheer reactionary rebellion. I only went to 7-11 six blocks from my house, but that’s left of my house and on the nearest controlled intersection, so I went the longer roundabout way of multiple right hand turns. These days, every flasher and floater lends me to see things that aren’t there and potentially miss things that are actually there. It was a jumpy stressful experience that I should not have undergone.
The physical and personal stresses of life that week and during the preceding one had just made something snap. I needed to get out, to do something for myself and by myself. Due to the Charcot foot, walking is no real option for me either. I didn’t want to call someone or particularly even talk to anyone that day. It was something I "needed" to do that day, as wrong as it was.
Nothing came of the experience. My "handlers" don’t know about it. Nothing got hit and no one got hurt, but I was jumping at shadows the entire time. It didn’t relieve any stressand probably raised the blood pressure for the day. I repeated this is a bad idea" for every ten feet the jeep rolled along.
I completed the errand and sat in the driveway behind the wheel for quite a while afterwards, trying to ingrain the stress I felt for the drive in order to force acceptance that I couldn’t do it again.
I have stopped driving. My elderly adolescence phase has not fully passed, but has gained enough of an angry, insolent edge that I will take all comers head on rather than sneak around. That’s more my style anyway. No one needs to take the keys, even if they could find all sets. The jeep is more unwieldy now anyway; it’s set up with the full plow rig for the winter.
Sunday, January 1, 2012
End of the Road
The last adventure behind the wheel had been in late October, after the undiagnosed foot problem was causing all sorts of problems and new limitations that I would not accept. The prolonged problem throughout October had me ready to lay off the bowling for a while. I had a planned absence in one league that I needed to prebowl for anyway, and my roommate who serves as primary control freak caregiver did not want me bowling at all. Like a naughty teenager I had been once upon a time, I stole my own car and went bowling. My scores sucked.
Under ideal circumstances, I could still do OK driving then. Some legs of the journey were actually enjoyable driving. The parts of the journey that were not enjoyable more than overcompensated for the easy parts.
Due to the closure of the School Street exit, I had to go by a less familiar route. If I had thought to go via Newport Avenue, I would not have had the scarey moment. The road markings are clearer on Newport Avenue and other traffic would have kept me in line with the road. Instead I went by the industrial highway. The traffic markings there grossly need repainting. I guided by the side of the road, which worked only until the industrial train tracks leveled and opened to the car traffic road and there was a break in the curb and the asphalt crossed and merged with those tracks.
While driving on the tracks, I did not test the claim of that old MacGyver episode that Jeep Wrangler wheel bases perfectly align to standard railroad track widths. I thought it more prudent to use the rugged vehicle to jump the curb and get back on the car roadway. I don’t recall ever seeing a train on those tracks, but why take chances just because the non-traffic ride on the tracks was somewhat more worry free than contending with other drivers who might be paying less attention than I could physically give?
No train came; I could have made it the half mile or so to where the tracks opened to the next street.
I did take the better marked road home. That caused its own problems as the setting sun flared against the dirty windshield and my dirty eye, stopping me dead at one point, an action not appreciated by other drivers with loud horns.
I’d never been so tempted to kiss the ground in gratitude of safe arrival from my own driving before. I decided I wouldn’t be driving again.
I didn’t get caught for having snuck out and never did tell the roommate. I fessed up to two caregiver type friends, one of whom found it horrifying and the other hilarious.
So why did I, one last time after this harrowing experience? It’s what I call "elderly adolescence."
Under ideal circumstances, I could still do OK driving then. Some legs of the journey were actually enjoyable driving. The parts of the journey that were not enjoyable more than overcompensated for the easy parts.
Due to the closure of the School Street exit, I had to go by a less familiar route. If I had thought to go via Newport Avenue, I would not have had the scarey moment. The road markings are clearer on Newport Avenue and other traffic would have kept me in line with the road. Instead I went by the industrial highway. The traffic markings there grossly need repainting. I guided by the side of the road, which worked only until the industrial train tracks leveled and opened to the car traffic road and there was a break in the curb and the asphalt crossed and merged with those tracks.
While driving on the tracks, I did not test the claim of that old MacGyver episode that Jeep Wrangler wheel bases perfectly align to standard railroad track widths. I thought it more prudent to use the rugged vehicle to jump the curb and get back on the car roadway. I don’t recall ever seeing a train on those tracks, but why take chances just because the non-traffic ride on the tracks was somewhat more worry free than contending with other drivers who might be paying less attention than I could physically give?
No train came; I could have made it the half mile or so to where the tracks opened to the next street.
I did take the better marked road home. That caused its own problems as the setting sun flared against the dirty windshield and my dirty eye, stopping me dead at one point, an action not appreciated by other drivers with loud horns.
I’d never been so tempted to kiss the ground in gratitude of safe arrival from my own driving before. I decided I wouldn’t be driving again.
I didn’t get caught for having snuck out and never did tell the roommate. I fessed up to two caregiver type friends, one of whom found it horrifying and the other hilarious.
So why did I, one last time after this harrowing experience? It’s what I call "elderly adolescence."
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