The Cure Found!

I have long had the view that diabetes should be an easy thing to cure. Do a pancreas transplant. I figured there might be factors I don’t know which may make such solutions more complicated or risky or impossible than I realize, but I always figured my cynical assumption fit this lack of solution best: Pharmaceutical companies and other for-profit medical industries do not want the cash cow that is diabetes cured. Their desperation to hold onto income sources is more important than the comfort and well being of patients who are a captured market for the products and services. Manufacturers of diabetic products are the biggest donors to diabetic organizations. With their money to the charities comes their power over the charities. Their money via lobbyists and research gives power over the government and their agencies. any people, particularly doctors, are quick to call me cynical or paranoid.
My response is one of two old quotes about paranoia: "Even paranoids have real enemies" and "A paranoid is someone with all the facts at his disposal."
While worrying myself that a bad combination of probably separate digestive tract issues was diabetic kidney problem, I was perused a website:
http://www.netdoctor.co.uk/diseases/facts/diabetickidneydisease.htm
From this site I picked up an offhand quote at the very bottom of the article before references are listed,
"In some centres a transplant of the pancreas is done at the same time as the kidney transplant – removing the need for insulin or tablet treatment for diabetes."
So, they are already doing pancreas transplants. They are not doing them here in capitalist America, but a country with an evil "scourge" in medicine, a socialist system.
I’ve never found this information when looking for it directly. Finding it in such an offhand and almost accidental way certainly feeds my paranoia.

Type 2 at 72

I had occasion to recently talk to a friend who has been a Type 2 diabetic for almost 10 years. He is on insulin shots and had "well being" issues during a time when his doctor would prescribe any designer insulin. He also does not feel as well when his sugars are lower.
He most definitely developed Type 2 diabetes for dietary excesses. He lost a lot of weight when he started the diabetes regimen, but never saw true success with diabetes management until he stopped experimenting with oral medications and went to the needle. I have him solidly in mind whenever I advise anyone to skip the designer oral medications that doctors and their pharmaceutical sponsors push and go right for the needle.
He is not someone "similar" to me but of a different generation. People, including sometimes his own (adult) children, consider him kind of stupid. He speaks often and too much, sometimes approaching levels of a gossiping housewife, but he does not speak well. He is not well educated, and I am not even certain he graduated high school. His presentation may not be polished and of high vocabulary, but he is not stupid. He is quite intelligent in that life experience way.
He tests his sugars via home meter twice a day these days. He used to do it far more often. He rotates fingers, using all ten. He’s experimented with finger adjustment with an innate curiosity that should tell anyone that this is no stupid person. His experimentation showed him that even the finger used can alter results of the meter test. A 100 on the middle finger might be a 103 at the thumb or a 98 at the pinky. "Never callin’ a 200 when it’s there at 120, but it’s different," he assured me.
He uses all ten fingers in rotation. "I went like a week or so only using one finger," he told me. He was noticing decline in his sense of touch, so was looking to reduce that in most of his hands. "The entire fingertip turned black," he said. This told his common seismical brain to rotate fingers. He knows the number will be off from finger to finger, but only by a few points, and always "in the ballpark."
He has to show more caution with everything he does. He has so little sensation left in his fingertips that he is prone to drop dishes when washing them. Other times, "just for no reason" his fingertips will burn from the inside.
I told him, with my usual cynical humor, that he should send thank you letters to One Touch Ultra and Accu-chek. After telling me I always was a smart ass, he told me that the fingertips problem makes writing more difficult than it’s worth.
This diabetic’s problems that I bring up is not "just" a problem of diabetes. Diabetes reduces circulation and other metabolic and neurological functions, but did not spontaneously cause the extent of neuropathy he suffers. The home meter testing caused the actual problems.
I urge anyone and everyone to talk about all treatments with their doctors and to research every aspect on their own. As debilitating as diabetes can be on its own, many of the treatments cause their own problems. Regular readers of the blog know that my own experiences have taught me these lessons, often in irreversible ways. PRP laser treatment can cause the very problems it is supposed to prevent. Routine diabetes eye care with dilation of the pupils then strobing with intense light can cause light sensitivity. Home blood sugar testing can cause neuropathy. These treatment will not change if patients follow recommendations like sheep, without thought or input of their own. Without patient input and with a love of the perks and enticements, doctors will not question the information that the pharmaceutical companies provide. Without pressure, the [pharmaceuticals will never relinquish profits, even when those are derived from the discomfort and detriment of the patients (and their government) paying for it.

Pharmaceutical Monopoly

Millions of people take prescriptions that are more than what they need or are not what they need, period.
TV viewers must endure ads that sell them not only on drugs, but on diseases. Those types of ads are not allowed in non- ultra-capitalist countries.
We lazy Americans don’t even have to leave out armchairs to receive diabetic supplies and catheters . We have a choice of companies who will ship them for free, "remind us" when we need more (catheter users need reminding?!), and will bill Medicare directly.
A Google search of the very general term "biggest lobbyist" has two first-page hits with "pharmaceutical" or "health care" in the page excerpts.
"Pharmaceutical Monopoly" is one of my blog tags because more awareness needs to be made to this problem. The pharmaceutical companies are pursuing profits, not patient best interest. The health coverage plan sponsored by President Obama gutted provisions that might have interfered with those companies’ profits.
The best way to see drastic cuts to our endangered Medicare program would be to severely limit the reach of pharmaceutical companies.
It seems only one big corporation with a contradictory plan to the profit path can stand up to another. I can think of no other reason why Wal-Mart switched away from Eli Lilly and Company as the manufacturer of ReliOn insulin after only two years. As the big guy who brought down older favorites such as Ames and Caldor and local, smaller stores, and continues to be a serious threat to others such as K-Mart, Wal-Mart is the target of scorn. People want to root for the underdog and poke at the big dogs.
Wal-art does not threaten the economy and health the way pharmaceuticals do. The pharmaceuticals develop or discover drugs, then sometimes create syndromes or diseases to create a target audience. Their lobbying has decreased test time of new products that get pushed on the unwary doctors and patients then pulled a few years later when longer-term and often fatal side effects are discovered.
Thanks to the glut of Type 2’s, diabetics are seen as a lucrative growing market. The pharmaceuticals are the biggest donors to the American Diabetes Association and the Juvenile Diabetes Research Foundation and other organizations "for" diabetics.
Diabetics using the ReliOn insulin will need to watch themselves in the weeks and months following the change from Eli Lilly’s "Humulin" and Novo Nordisk’s "Novolin." There are differences in the insulin. I’ve been a user of Wal-Mart’s generics since the late 1990’s and it has worked fine for me. There has to be some difference in each brand and trade name of insulin to avoid violating existing patents and to protect new patents. There is much more of a stir about changing insulin with this change to Wal-Mart’s generic than there had been when Eli Lilly began manufacturing it in 2010. Don’t think that is not also to scare your dollars into Lilly’s pockets. Lilly would have you switch to their non-generic equivalent of the product they labeled for Wal-Mart because that is "safer" than switching brands and manufacturers. That is not true, but the change should be monitored with more than average attention.
In circling back to the interrupted topic of blood sugar testing, the manufacturers of the lancets and test strips free meters also have your best dollars in mind, not your best interests. Those free meters are akin to casinos that offer free drinks to people on the gambling floors. They don’t need to make anything off the meter because they’ll make their money off you from the testing supplies, even while they bury patents for equipment that could test your sugar without the need for lancets and chemical test strips.
The patient shouldn’t worry about neuropathy or other effects of the testing; they’re probably working on drugs for that now.

Lilies for Evil Eli Lilly

While I am inclined to cuss out the blog host again for more changes that make things more complicated for aa blind guy to navigate online, I’ll save that for another day. One of the good things from this Google-owned/affiliated provider is that I get good stats read-outs. When someone reaches my site through a search on Google, I can actually see what search terms brought them to my blog. Other simple searches can tell me just what posts were viewed.
There has been an increase in traffic to the post that lauded Wal-Mart for coming forward with the first generic insulin and the Eli Lilly and Company’s counter-commercial reprisals, all a decade and more ago.
The recent hits to the slightly older post are certainly related to the fact that Wal-Mart has made another change to their ReliOn insulin. I say another change because the last one was in October 2010, when Eli Lilly Company took over the manufacture of the Wal-Mart generic.
I used one exact search term that lead a reader to my site, "walmart changes insulan manufacturer." (Sic) One of the top-ranked referrals was to the ReliOn site, http://www.relion.com/for-healthcare-professionals/downloads/Relion_Insulin_Change.pdf
Even after the latest change, ReliOn displayed the warnings used when Wal-Mart switched to the Lilly-made generic two years ago.
After burning my eyes out on the first four pages of results, I saw no hit likely to feature the recent 2012 change of ReliOn insulin. Wal-Mart, in less than two years, has switched manufacturing company to the Novo Nordisk company’s "Novolin."
My guess is that Eli Lilly and Company got greedy and wanted higher prices, so Wal-Mart turned to a company less greedy. I found nothing to support that suspicion, but then again I found nothing to dispute it either. The last time I bought non-Wal-Mart insulin was in 2005. It was somewhere around $54.00. One forum post I glimpsed in researching this post claimed that prices now ranged from $75.00 to $125.00. I could get online pricing from neither CVS nor Walgreen’s because I do not have registered prescriptions with them. Oddly enough, I had plenty of options for syringes and insulin covers to go over the vials. I wondered if those were like the knitted things meant to beautify spare rolls of toilet paper.
This recent change in the Wal-Mart insulin is being stated by some pharmacists. I was told in one out of two purchases in the last month. The price has held steady at $24.88.
I have noticed some changes since using the Novo-Nordisk product. It’s duration does not seem to last beyond the 12-hour range I got from the Lilly stuff, but the Nordisk product does seem to be coming to strength a little later and staying stronger in the six to eight hour range.
What they say is true. Changes in insulin type or manufacturer should be monitored closely.

Diabetes Complications: Neuropathy

Diabetes stands as one of or the very mos common causes of neuropathy, specifically the forms of neuropathy frequently called diabetic neuropathy or peripheral neuropathy.
Diabetic neuropathy roots solely from the diabetic condition rather than external injury or toxin exposure or infection. Diabetes is just one of a number of metabolic disorders that can lead to neuropathy. Diabetes is at its core a major metabolic disorder. Neuropathy is all but inevitable in diabetes.
Peripheral neuropathy is nerve damage away from the brain and spine, which form the center of the nervous system. The nerves are damaged. With diabetics, reduced circulation–also a near inevitability–causes the nerve damage. In my experience, doctors downplay the inevitabilities of diabetes because they are afraid patients will too quickly resign themselves to the eventualities without ever truly trying to take care of themselves. These problems are nearly inevitable, but the lack of self care will bring the problems sooner rather than later. I seek to communicate more honestly than doctors have by my experience, but am not dispensing medical advice. Nor do I think much of anyone who gives in to the negatives without a fight. "Inevitable" should never be interpreted as "immediate."
The nerve damage can affect sensations of temperature and pain. Neuropathy causes pain and numbness, most frequently in the hands and feet. This is the source of foot problems and high risk for them among diabetics. If the diabetic cannot feel pain in his feet, he can be unaware of injuries. Ignorance of bone problems most often results in my friend Charcot Foot. The more common risk that plays out is infections from cuts, punctures and abrasions on the feet that the diabetic cannot feel. Diabetics should wear socks and shoes at all times in an effort to prevent avoidable problems. Yet, as always with this miserable conditions, the patient must also take precautions with the precautions. Socks should not be so tight as to reduce circulation. Shoes should be well fitted, neither tight enough to cut into the feet nor loose enough to cause friction burns and abrasions. Shoes should never be worn without socks. Open wounds caused by shoes can be the most sinister; their gradual development makes them the easiest to not realize you have caused.
I learned one thing about neuropathy in a hard way that almost cost me my life. The neuropathy and generalized reduced diabetic circulation in my feet have made "toe testing" of water temperatures completely unreliable. On a friend’s boat a few years back, I had sat in the back with my feet in the water. It didn’t seem that cold. I dove in. The water was cold, so cold it triggered shock. I almost drown. Conversely, bath water might be much hotter than the diabetic toe can judge. Always check with an elbow rather than an extremity.
The neuropathy topic directly bridges into the running blood sugar testing topic. Please note the information from earlier in this post, a very subtle point in the overview: "Diabetic neuropathy roots solely from the diabetic condition rather than external injury..." Medical professionals probably will not point out to you that all the finger pricking of traditional home testing is likely to advance or cause neuropathy in the patient’s fingertips. You cannot keep sticking lancets into your fingertips without causing nerve damage on some level. This, and not the discomfort, prompted the recent push for non fingertip testing. Some sources on the net do not cite better than the 10% inaccuracy of arm testing than the patient could see with urine testing.
This risk to the fingertip nerves stood as one of my rationalizations against hopping on the home meter testing bandwagon. Again I warn: I have managed my diabetes with care, but in contrast to modern preferences and standards. I recommend anyone reading this to have frank conversations with their doctors before just doing what I do, and recent Type 2 diagnoses will require some form of home testing.

Hungry Years

Home testing the blood sugar is probably the most direct way of knowing the numerical value of your immediate blood sugar level. I refuse to do it for many reasons.
(The repeated warning: don’t try this at home kids, at least not until you intimately know your own body, how it reacts to different things. I am telling about the how’s and why’s of my own circumstance, but I encourage no one to follow this path.)
I take the diabetes seriously and pay attention to it. I simply place higher value on how my body feels and functions than I do what number a chemical test gives.
I was out on my own at a young age, too young. I tested my diabetes via urine testing methods up until the point supplies ran out and the choice was taking limited funds that were usually trying to catch up on rent arrearage and buy either food or testing supplies. I was renowned by friends in those hungry years at age 19 and 20 for having no food in the apartment, not even saltine crackers and peanut butter. I survived largely by working foodservice jobs, which provided at least one solid meal a day on break. The night’s leftover bake potatoes were a feast for home consumption. I became adept at opportunistic feeding, a mouthful of tuna salad seized while retrieving something from the walk-in refrigerator or a swallowed-whole slice of cheese or lunch meat. F I was as truly as smart as I claimed, I would have committed the more typical forms of restaurant theft, with sides of beef tenderloin or cases of burgers or chicken patties out the back door during trash runs. I think I was just too afraid to get caught, that visiting coworkers would see "hot" food in my apartment and "know" I was a thief.
I learned to not talk about needs or being broke in those years. If people know that about you, their eyes fall to you first when someone’s wallet is stolen from their jacket. A waitress’ tip-filled apron had been stolen at one place I worked. Another employee had accused me outright, without privacy or tact. I remember how I felt that day. I remember that same coworker bringing in return slips from her department store job so her restaurant coworkers could fill the slips out. This allowed my accuser to steal cash from her other job. Ne of the other "prime" suspects was caught a few days later with "marked" tips in his pocket. You could trust me with your money, but not with a plate of French fries.
These hungry years shaped diabetes management. Testing was a luxury I could not afford. I had to alter insulin doses when I could not afford to eat enough to maintain the insulin dose, or afford to eat at the times the insulin dictated I must. I developed a habit of eating for the sugar. Gone were the luxury days of oatmeal for breakfast. Instead, I carried plastic bags of Tang and often mixed it in my mouth from a bubbler (which is Rhode Island for "water fountain".)
This era is probably where the old damage from diabetes occurred within my body. For a while in the early to mid 1990’s, I had a job that included insurance and tried being a good, doctor-visiting diabetic. It lasted just long enough for me to know problems existed. All the problems were put to me by doctors as crucial things, but before long I was without means to follow up on anything. The same things came up in the interim, and pretty much all the problems were still there at the same level when I started indulging myself with doctor exams from 2005.
I say that precisely: "still there at the same level." In the intervening years I had learned to walk the balancing act that the diabetes requires. Without sugar testing that had become the vogue and accepted standard, I had managed to manage the diabetes without doing damage to myself.
I had a stable system that I managed by feel.

Quantity or Quality?

I refuse to test my blood sugars with home tests and meters.
I do not recommend this approach or encourage others to follow my obstinacy. I am blogging about my own life and experiences. I will detail the how’s and why’s of my situation, but I am not dispensing medical advice here. Constant home testing was necessary as I grew up in the 1970’s, but this was done with urine testing rather than constant blood letting. Standard modern thought is that this can be some 10% more inaccurate than constant blood monitoring. There is additional concern that thee accuracy can be further skewed if the diabetic has kidney damage. I counter this by saying the diabetic should be tested for kidney damage and told how to adjust.
I will get into the reasons, logical and perhaps some emotional, of my opposition to testing in the posts that will follow. Right now, I will outline how I do manage the sugar in broad terms. This is information sharing and not medical advice. Barring digressions and other topics that come up in life, the blog will focus on blood testing issues for a while. It’s a serious and central issue of diabetic "lifestyle" that I feel needs attention and further thought.
The not testing reveal comes with another public confession that I have only really alluded to in prior posts over the past year. My blood test numbers are typically astronomically high. My body operates well and in healthy regards with numbers in the 200’s and 300’s. Tests have shown spikes exceeding 600. At those times, my sugar felt high, but I have suffered symptoms of low blood sugar with numbers in the 400’s.
I know this sounds horrifying to people with even passing knowledge of the numbers game. The target of meter numbers is around 120. The target A1C is 6.5 to 7. Mine have been to 16.
My GP has said he does not understand how I have never been in a coma. Others don’t see how those numbers can be true because I have always been a fit and lean and healthy diabetic. All medical professionals see my refusal to self test and the high numbers as poor blood sugar control.
I don’t agree with the assessments. Not testing by pharmaceutical means is not the same as paying no attention to the underlying condition. I "manage" my diabetes by feel. My emphasis is on how I feel, not what the numbers say. I avoid "high" blood sugar–when it feel high–for the most basic reason: I don’t feel comfortable when the sugar feels high.
Since starting with the GP in 2005, I had several prolonged periods of getting my numbers significantly lower. A1C numbers of 14-16 have gone down to 9, still short of doctors’ targets and always conveyed to me as not enough.
The lower numbers are healthier, I am told. I haven’t been able to believe that, not because I am obstinate, but for a basic, almost primal reason. Every time my numbers get and stay into the "better" ranges, I feel like shit. Clinical depression overwhelms me. I can’t sleep right or function like the dynamo I prefer being. My quality of life feels non existent.
Therein lies the irreconcilable difference between me and my GP. He wants to paint by numbers until he can declare me healthy by statistical standards. I want to feel good. I see little to no value of a prolonged life if it is inescapable, endless days of feeling bad. There’s a quality over quantity issue over which we will never agree.

Rationale and Rationalizations

I don’t test my blood sugars, Instead I pay attention to the indications my body gives, which is a constant process. I will post with more specific details, but this post will I’ve a run down of the rationale and rationalizations behind my seat-of-the-pants management of my diabetes. Please note, as I will explain in more detail, that the "feeling it out" process started by lack of funds, not specific or intentional disregard for medical practice. Nor do I recommend this to anyone, even given my cynical first point. I don’t even claim to be right on this issue. I just know it has worked for me.
I find the home blood testing process to be something of a captured audience racket by pharmaceutical companies. The technology exists for scanner devices that would not require test strips or lancet needles that must be bought for each individual test. The industry has no motivation to make these technologies available as it would mean serious revenue loss for the test strip and lancet manufacturers. It would, however, also mean millions of dollars in saving for medicare and insurance coverages.
I manage by feel. It happened in my doctor’s office that the numbers and the sensations appeared contradictory. As my body went through a relative drop, it triggered that low sugar feeling as it always does. One of the medical assistants ran a meter test and it came out around 400. If there’s any contradiction between the numbers and my body, I’m going to pay attention to my body. It may not look like much, but I trust it.
The finger pricking, and the "other site" poking hurts. The blood letting is far more uncomfortable than the needles used to take the insulin. Unlike taking insulin, test pricks are not strictly necessary for survival.
I do not see how constantly driving needles through fingertips can fail to hasten the development of neuropathy in diabetics. It seems scientifically impossible for the constant poking of the fingers’ and arms’ nerves not to further neuropathy problems via injury and stress to the nerves.
On the same token, it makes no sense to me to warn diabetics about being mindful of cuts or problems on the extremities due to risks of infection, then have them inflict multiple skin breaks per day. Sterilization at the site at the time does not guarantee germs can get in the hole later or that the holes will not reopen.
Non intrusive gauges such as urine testing served diabetics for decades. They are less costly, and obviously would not raise the same profits for the pharmaceuticals.
Tests such as the A1C can guide the diabetic to how he is doing. Yes, there are lab costs involved, but most doctors order these tests in addition to running home meter tests anyway.
In the ultimate equation of time, money and aggravation equation that I run on most anything, the entire process seems wasteful. The benefits to the pharmaceutical companies and those suppliers who ship automatically and bill Medicare such as Liberty Medical seem far greater than any direct benefit I (or Medicare) receive.

Bad Diabetic!

Specific disagreements exist between my GP and me. If I tell him about a new problem, he is inclined to do one or both of two things. Blane the diabetes without considering other likely factors I report, and toss another drug my way. I have always been one to seek natural solutions or even suffer through something temporary before resigning myself to chemical solutions. The Cialis-caused vitreous hemorrhage does not steer me closer to taking a drug for any and every complaint. As a result, my GP is less effective to me because I tend not to mention minor or recurring problems if I think he will not consider the contributing factors.
The GP is not alone in this. When I reported the side effects of prednisone to my current eye doctor, she waved me off and told me "that’s the diabetes" and that I should get my kidneys checked. This is hard to accept when the symptoms matched those listed as side effects of prednisone and their onset coincided exactly with taking the prednisone. They also stopped in perfect timing when I had temporarily discontinued the prednisone.
Type 2 diabetics beware: one thing you will learn about your status as a diabetic is that medical professionals will stop looking for other causes to problems.
I pay more attention to my health and well being than people realize. If I am feeling different, I am going to look at recent changes or adjustments before I resign myself to blindly accepting general statistics that something "just happened" because I am diabetic. Yes, diabetes can contribute to dozens of problems and complications.. My system had been stable for years, and in my experience including the eye and foot problems that now permanently plague me, diabetes was a sinister opportunist in amplifying problems, not a spontaneous cause of any of them.
My GP does not accept this. Many don’t. My GP has one glaring annoyance with me. I do not think he is wrong on this point. He may very well be right, but this issue has side effects and other problems that he finds acceptable. Don’t. There’s discomfort involved, and permanent problems that diabetes can become opportunistic of, even though the problem roots from diabetes treatment.
The warning before the big reveal here: I can get away with this. Arrogant as this sounds, I’m smarter than average. More importantly, I pay attention to my body and what it says and what recent changes may contribute to new or different feelings for good or bad. I have been diabetic for almost forty years, and that’s a lot of experience.
Type 2 diabetics especially should not take my discussion of how I handle myself as medical advice or encouragement for them to do things the same way. The learning curve of the newly diagnosed takes years to develop, and anyone without the innate knowledge of themselves and their body’s reactions cannot handle this the same way.Here’s the basic, drastic reveal of death defying management that baffles and angers most medical professionals. This will be shaping the direction of the blog for a while as I go into details in the future.
I refuse to home test my blood sugar.

Out of the Dark

The current setbacks are not random. My experience and attention to the problem reinforces my "crazy" theory that the standard treatment of diabetic eyes is contributing to the problem. Instead of going dark, I am having increasing problems processing light. The degradation is not random, but it is constant.
In standard check ups on diabetic eyes, the eyes are dilated with drops so the doctor can look through the widened pupil and see the retina. In this process, they strobe the eye with intense light.
I do not remember this ever being done as a child. The first such exam I remember was when I was twenty-one. I remember it specifically not just because I was blinded by the unyielding brightness into the next day. That exam marked the definite beginning of "diabetic eye condition" of light sensitivity. Things were never the same, never as comfortable, afterwards.
My recent "setbacks" in vision have all occurred after similar exams by the eye doctor who performed the retina reattachment. I say that as statement of fact and am not blaming her for the recent degradation or the lack of success for the reattachment procedure. She is examining the eye according to generally accepted practice.
She told me after the first exam she performed when I became her patient that I had the most complicated set of eye problems she had encountered. While I think the "hazing in" form of increased blindness I have been noticing is directly rooted from the retina issue, I don’t deny that other factors could be at work.
My vision is fading to bright cloud after each follow up visit. Each setback has the computer brighter, with details such as type on the screen more faded or "grayed out." Adjustment between sources of light and dark is more difficult after each visit. Any color send when looking at the bright box of the TV is further washed out for the brightness of the screen.
This became a hot issue for me this week because I tried mowing the lawn. Between shadows in the yard cast by houses and trees and even worse, changing light conditions as clouds kept blocking then releasing the sun’s direct brilliance, I was unable to do it. Never mind that the bum leg was bothering; I just simply did not have the visual acuity to see what was cut and wasn’t. My field of vision is narrowed and my range of vision really couldn’t discern much beyond the front of the mower. I just could not do it and that is gnawing at me.
I‘ll be talking to the doctor about this after the next visit, for sure. I’ll be holding onto the hope that the next procedure–draining the silicone oil out of the eye and replacing it with saline solution–will clear out any tiny matter that may be acting as "morning ground fog" in my vision. If that’s true, I will learn to content myself with prior levels of blindness as I had earlier this year. If not...well, hopefully I will continue to prove my resilience and be able to cope with that too.
It’s been a hell of a year.

Into the Light

This is something of a feedback/update post. The direct feedback answer is, unfortunately, "Yes, the eyesight is getting worse."
The retina reattachment procedure performed last January was not as successful as either I or the doctor had hoped. By the doc’s choice, the silicon oil remains in the vitreous as a pressure regulator to keep the vulnerable retina in place. I’d just as soon have it removed and see how things go on their own and know, ultimately, what I will–or won’t– have to work with going forward.
I do not blame my current retina specialist for the failure. I do blame Michael O’Brien at Koch Eye Associates for using the Cialis-induced vitreous hemorrhage to scare me into having the PRP surgery. O’Brien ignored that I told him, that other doctors had found it acceptable and successful to monitor the left eye retina closely but not go forward with PRP because the retina was entirely stable. O’Brien had tantalized the possibility that the vitreous hemorrhage was not from the Cialis. Time proved me right but there’s no consolation in that. If I had not done the PRP, the hemorrhage would have healed and I wouldn’t still be legally blind and losing more regularly.
Before the reattachment, things were going darker for me. The changes would be random setbacks as floaters dislodged. The aspect of the reattachment that required the vitreous to be drained solved that.
The current setbacks are not random. My experience and attention to the problem reinforces my "crazy" theory that the standard treatment of diabetic eyes is contributing to the problem. Instead of going dark, I am having increasing problems processing light. Twilight for me is more akin to what nighttime used to be. My eyes cannot seem to spread light particles to cover areas. I see light sources as glaring beacons that add no atmospheric light.
I am blinded in daylight for the opposite effect. Too much light is just too much, too bright, blinding. Concentration on the keyboard allow me to see the marks on the keys, but looking to the TV I use as a huge monitor washes out all else and looking back to the keys is all but impossible. (I type in a half-ass mix of "proper" typing and hunt and peck that gives me a respectable but far from professional word rate. I had started fiction writing–and typing–before high school and had never been able to "unlearn" my personal progress to make better long-term progress in Mrs. Sprague’s freshman year typing class.)
Instead of seeing everything going dark, everything is washing out. Direction, intensity and sources of light have a huge impact on what and when I can see, more than ever.
The degradation is not random, nor constant, but does not improve after a while.

Odd and Mismated

There’s been arguin’ goin’ on ‘round these parts. All my fault, of course.
I have now had time to fully psychologically accept the fact that the Crow Boot is a permanent fixture on my right foot. It will probably only become unnecessary when the eventual inevitability of amputation occurs.
I cannot move around without the Crow Boot, or more unwieldy, crutches. I am not very coordinated with the crutches and they prevent any real use of my hands. As clunky and indiscreet as the Crow Boot is, I appreciate having it because I would be totally useless without it. Putting weight on the right ankle risks further collapse and the even more gruesome possibility that the tibia could fall off its structure and pierce the skin from the inside.
With this acceptance comes the realization that I have a lot of shoes, specifically right-foot shoes, that are useless to me. The argument with the roommate started when I asked about the VA or other places that may want donation of single shoes. I was told how absurd the concept was and railed to throw the useless things away.
I don’t remember where I heard about one shoe donations. It could have been an Ann Landers column of decades past, or something during my lucrative time selling shoes with Filene’s. The desire for donations like that was just an oddity that stuck with me.
Other people I asked had never heard of such a thing either, although those conversations did not degenerate into arguments about people who hoard trash.
I sold shoes for a living. I am a diabetic who always took the basics of foot care seriously enough that I seldom bought cheap shoes and I never "suffered" shoes that hurt my feet. The ones that weren’t comfortable got put into donation bins where they could hurt the feet of needy people who statistically would not be diabetics.
I’m not a fashionable guy, but low end shoes for me are Skechers and Bass. I’ve shown brand loyalty to Clarks, Timberland and Johnston & Murphy. As the thought was not to pass off cheap ass shoes to people, I really don’t think I was crazy for thinking that these things could serve a purpose greater than landfill.
I should have just gone to the internet rather than asking around. I found a list of organizations seeking such donations at http://www.amputee-coalition.org/fact_sheets/oddshoe.html
There’s great resources there both for people looking for one-shoe sources and those in a position to donate.
Calling the Providence Veterans/VA hospital did net the best, nost immediate results.
Maybe I am crazy, but not about this.

Drive and Function

I did not use the boner pills that my GP had provided when I complained to him about sexual drive issues. I know myself and pay attention to how I am feeling and factors medical and emotional that would have me feeling that way. I was pretty certain that I was having drive issues, not dysfunction. My general practitioner waved this theory off and gave me a free trial of Cialis.
I tested my theory before popping any blue pills. I forced myself to watch some favorite porn. On the computer. I used the picture viewer to roll through still images at a pace that allowed them to penetrate the subconscious rather than fixating on the familiar favorites. Everything worked as well as it had before. That proved to me that the issue was not dysfunction that could be medicated, but depressive disinterest. I took none of the boner pills, not even out of curiosity or some dim witted hope that they would make it even better. I am single and unattached, so my disinterest was not something impeding or impacting anyone else. I was really OK with it.
That changed when I did start on an anti-depressant, a generic of Prozac. The Prozac lifted the deep clinical aspects of the depression. My drive returned, but the Prozac triggered actual dysfunction. Off anti-depressants, I had function without drive. On them I had drive without function. Rocks and hard places, I guess.
On 5 October 2009, in preparation for a good opportunity in the afternoon, I took on of the boner pills my GP had given me. It had only been the third time I had taken one ever, and the prior dose had been a month or more before.
On 6 October 2009, a vitreous hemorrhage dumped blood into my eye. I could see a shadow slowly rolling through my sunlight eyelid as I woke, the spread of a thick liquid rolling over my sight, not unlike many old horror movies would have blood flow the screen to black. Opening the eye brought brilliant rose colored vision. The slow flow was blood.
I’ve written about this before, in the most detail on the very earliest posts on this blog in October 2011. I have never added the details of the source of the Cialis.
I doubt that I would have ever asked about a straightforward dysfunction issue with my doctor. If so, I probably would have brought it up in question of the effects of the Prozac. He probably would have told me the problem had nothing to do with the drug, but was all because I am diabetic and solely because I am diabetic. He has shown this attitude about other things that had overlap with the sugar, and he has totally waved off legitimate questions about potential side effects of other drugs he or his office has prescribed, both before and after the hemorrhage.
I point no finger at my GP for my blindness, even though the storm of problems would not have begun without that free sample of Cialis. I blame myself for taking it. I blame Eli Lilly and Company and the other boner pill manufacturers for downplaying and suppressing this horrifying side effect. I am not above pointing fingers, but I never do so casually or defensively. The aim of the fingers I do point is very accurate. I’m not sure enough about this situation.
Blaming my GP would be one things. I can avoid the impulse because I do not believe he had any awareness of the potential problem. I do think that maybe he should have had that awareness.
While I don’t blame him, neither do I trust him. There, I think, rests some friends’ argument that I should look for a new GP.

General Principle

OK, so after depressive diversions and digressions, it’s back to the issue of my General Practitioner. I like him. He is a nice guy. He is a competent doctor. I’ve been seeing him since 2005, so he and I typically can deal with each other well. He can be difficult and I freely acknowledge it: so can I.
A couple people that are closest to me do not like my GP. Both encourage me to change doctors. I am resistant to do that because the "interview" process is something I dread, and because there’s no inflammatory problem with my GP. If I dismissed him, I would be likely to go without until I actually needed a doctor. My GP is competent. I just don’t know that he is all that good.
My GP has gained points by being honest when saying he did not know about certain aspects. To me, that is always preferable than someone who pretends to know and makes matters worse through ignorance. He has stated outright that he was not knowledgeable about advanced eye issues past generalities. He is not up on dietary remedies, causes, or alleviation to specific problems. On the upside, he was able to explain things like the eye problems being potentially as much of a cause of vertigo or balance issues as the inner ears can be. Like anyone and almost everything, he has both good and bad points, and the balance is acceptable to me, most of the time.
My big complaint is a glaring point to me. This may sound odd with the general occupation that he practices medicine, but I do not like his fixation on prescription medication. This was a source of dislike for him from the time I first met him while being treated for the broken shoulder. He had told me then that if he took me on as a regular patient, he would want me on a cholesterol medication and a blood pressure medication and a couple other things, all because I am diabetic. My problem with that was and is very basic: my blood pressure reading was in the normal range (~138/78) and he had not tested for cholesterol. I find something wrong with doctors prescribing drugs on "general principle" and not by demonstrated need. This makes me feel as though he is puppet and pawn of the pharmaceutical companies. I have never lost that opinion. I have just tempered it with the certainty that I would never find a doctor with whom I agree about everything
My roommate numbers among those who think I should find another doctor because of the drug pushing issue. The roommate doesn’t necessarily think casual and automatic reliance on chemical concoctions is a bad thing. Because I know my GP is inclined to throw a drug at any problem I mention, I don’t mention many problems and discomforts. My roommate feels I am disservicing my own best interests with my reluctance to communicate issues with the GP.
He’s probably right.

Cynical Optimism

I’m not surprised the "Outright Ranting" post trigger some questions and feedback, which can be summed up almost universally as "why?!"
I’ll explain that willingly, in part because I knew after writing it, and when posting it a couple days later, that it was not my strongest post. Yes, it "meandered all over the place" and lacked focus. It demonstrated some of the simmering anger, and not quite in humorous ways. It was the product of a bad morning of a bad week in a month that proved stressful. There were problems that just happen in August, and while never happy about such things, I can cope with them OK. The true stress entered into things–and almost everything–from other people, not from the generalized circumstances. Whether flesh and blood events or sudden increased difficulty with electronic things posed by developers I’ll never meet, most people involved in most situations seemed to stand up and contribute to the problem instead of the solution. These precise stresses added to more generalized stresses including another decrease in vision and anxieties trigger by the general turmoil in society that political seasons always seem to highlight.
Basically, there’s been ton of crap coming from every direction and a heightened feeling of loss for things I used to be able to do and enjoy. All this contributes to writing such a diatribe. I’ve written things like that before, but seldom post or attempt to publish them. So why did I publish this one, without editing out digressions and diversions?
The first is the minor answer, and, I admit with some shame, pseudo-commercial. The post that strayed far from diabetes, blindness and Charcot foot has a lot of terms that will lead potential new readers here via search engines. This is not so impossible. Recent Google searches that have led people to this electronic space include "+doctor +dumb +ass" and "getting old doesn’t mean you have to get crotchety."
In part because I get so many compliments about how I’ve been handling the losses and disabilities of the past few years that I sometimes feel like a fraud. I truly am handling things well, but some people have this thought that the handling is effortless. The truth is anything but.
I basically am the most optimistic cynic that most people could ever meet. I concentrate on the positive and on what I can do rather than all the things I cannot do well or at all. This takes more effort than most people see. My roommate sees most of the truth, because trying to hide those things even when home would be more than I can shoulder. It can be hard for him to deal with; I can be hard for him to deal with. That cynical optimism tells me I don’t deserve such a loyal friend.
Here this post could reach the place I want no post, or even writing that would remain completely private, to ever go: into the realm o self pitying drivel. I mentioned in a recent post the forthcoming publication of a blindness story "Through Rose-Colored Lenses." I’ve read most of the stories they have published since the time they accepted "Smokestacks" in 2010. I have found most of the stories they publish to be in the self pitying drivel mold. "Lenses" is a comedy. I need to laugh, and can do so at myself. I need to laugh t myself. My sense of humor, admittedly something often mean and offensive in political incorrectness, carries me through. The principle is the same as that crazy theory I postulated in the "offensive" post that suppressing the darkness of our social anger will only boil the anger to rage. I am neither sexist nor racist, although I’ve been accused by many of both and more, based on my sense of humor. As I have gotten older and more worldly, society has increased the list of sacred cows. I try to make the list into a menu.

Great Escapes, Thwarted

Reading vision has become impossible, even in larger formats. I need to scan almost everything to read at all, because I can change magnification and distance. Even when the mail comes in, I can no longer differentiate the shape of my name from my roommate’s to know whose is whose.
My brain is nowhere near as addled as some people would have had me believe. I fill in a lot by shape and recognition and color. I can’t see the words, but sometimes I can see where spaces between them are Without seeing the content of the letter, I can usually get an idea of the format and flow of the paragraphs. The more familiar I was with the typical format of bills and correspondence before the vitreous hemorrhage that spurt blood in my eye following a dose of Cialis, the better I am at identifying business from the same company.
When they make changes to format, the senders "blind me" further, in the same way I have recently decried of web pages changing formats. The changes deprive me of cues I have come to rely on.
Reading for pleasure is over for me. I can barely make out authors’ names and titles on book covers, and I’m not sure how much of that is familiarity with the book. The contents of books are lost to me. I was a lifelong collector and reader of science fiction and super-hero comics books. The habit is lost to me. Overall quality had been in decline for the past decade. I am aware that I had been enjoying the new-issue buying and reading less with each years of the 2000’s decade, but I had not yet been willing to give it up. A recent attempt to update myself online emphasized to me that the medium is certainly dying and that maybe I missed the escapism in theory more than actual practice. Still, I tried looking at one of the last ones I had ever bought and no augmentation could bring the words or pictures into focus. This triggered a new bout of depression.
I go through a lot of audio books and applaud Rhode Island’s integrated loaning system that allows me access to almost any audio book in the state. It’s still not the same as holding a physical book. Some things by English or foreign authors make difficult listening if the reader has a thick accent. Some of the classics become "unreadable" because skimming or glancing over the "boring parts and huge blocks of dense and often dated exposition styles just isn’t possible. I’ve learned a bit and finally "gotten around to" things I probably never would have read in "real reading." I’ve explored authors I had heard of and knew to be respected storytellers, but the shelves of esoteric and old science fiction–the field I write in–is lost to me. Much of it isn’t even in print any more, so there’s no chance it would find its way to audio form.
I maintain the mindset that I force onto most aspects of my life. I try to block out and ignore what I can’t do and what I really want, and try my best to content myself with the rest.

Power and Responsibility

I never lost that childhood and perhaps childish ideal that people in certain professions should be held to higher standards than "average" people. I hold a number of professions to higher standards. This includes teachers, clergy, police, politicians, and, yes, doctors and nurses. These people, and others, need to recognize the importance of their positions on the people they deal with every day. I’ve never been in those professions, but took my time as a property manager with similar consideration for others. It was a business, so foolish to make any decision that would lose money. In my case, however, it was the business of people’s homes, not just given apartments. While that does not mean I can willy-nilly assign apartments to every grifter who calls with a hard luck story or "demonstrates" their goodness by imploring the name of God or passing Hir blessing with every stage of their needful tales of woe that I personally can solve for them. I looked at that position as having a responsibility to and for the people renting from me, not just the power to toss them out. Multi-page rental agreements can make me look like a control freak at the start, but in reality I just wanted everyone else knowing what is expected of them and me and having opportunity to walk away before entering into commitment.
I don’t see much attention to the responsibilities of power these days. Maybe that has something to do with news trucks hounding then ratting out city workers because they stopped in the city vehicle for lunch or ran an errand in the city vehicle on the way home. That’s a long cry from the days of suppression. Back in the 1987-88 academic year, the journalism teacher of the high school I had attended presented a student’s (not mine, which is why I don’t name names) work as her own to the Providence Journal and allowed the piece to be published under the teacher’s own name. We all know the stories of crooked cops and self serving politicians like David Cicilline. I find all the stories stem from the same root: the abuse of power.
Doctor’s God complexes can ruin peoples’ health and well being. They whine about the rates of their malpractice insurance without stopping to consider why those rates have skyrocketed. I see both sides, and admit that we live in too litigious of a society The beneficiaries of this are insurance companies and attorneys. Doctors and patients alike only seem to suffer for it.
I would think that doctors’ best proactive defense would be to remain conscientious in dealing with their patients, in trying their best to treat every patient as an individual with a unique body and needs that will never be absolutely normal in every regard. There are no absolutes. Nothing can be absolute in preventing malpractice claims; there will always be someone ready to sue when se did not get hir own way. However, an approach free of the doctor’s ego and sense of power over patients goes a long way in decreasing the likelihood of dissatisfaction.
I don’t know how many doctors would actually do this when it is easier and rewarding in materialistic ways to blindly do as the pharmaceutical reps indicate to move new products, but I retain enough of that childish idealism to keep my fingers crossed.

Through Rose-Colored Lenses

Since "going gimp" via a vitreous hemorrhage in the one good eye in October 2009, I have done little work with my longer fiction. I’ve written perhaps a dozen short fiction pieces, and have not been very thorough in keeping either division submitted to editors; there’s a lot of detail searching, and that’s more difficult these days, obviously. The blog has kept me writing and given me a small regular audience that seems comprised of both known people and strangers. I do write to entertain and inform, so I am grateful to those who take an interest in these more cerebral parts of my life.
Despite the lessened progress on the fiction side of things, I’ve had some great accomplishment. "Advance Gratitude" and "Welcome to the Konvokashun" were accepted by the publications "for which" I wrote each, first time out of the gate. "A Pediatrician in Wartime" and "The Thirteenth Day on Kurko" each saw less than a half dozen submissions before finding acceptance. Other stories that had more difficulty finding just the right editorial match found homes, so hard work has ushered in some good luck, though not enough to balance the bad luck of my new physical realities.
My latest acceptance is also of a story accepted with only the second submission, "Through Rose-Colored Lenses." Breath and Shadow, an online magazine "for and by disability culture," took it. This same magazine published my story "Smokestacks" a few years back.
"Through Rose-Colored Lenses." is specifically remarkable on the blog because it is, to date, the only fiction piece I have done that specifically finds inspiration from and gives outlet to my disability, specifically the blindness, and the circumstances that started this ball rolling into a personal avalanche.
The story is humor. The editor expressed concern that it may be offensive to some, but I figure if humor doesn’t offend anybody, it’s probably not really that funny. There’s a butt to every joke. The story has social satire, with a particular focus on sex and drugs in ways that may surprise. And there’s farting that will make Stephen King proud. I wrote it with a specific anthology in mind, . I think its failure there was more of a personal political issue than a story quality issue. The anthology ended up featuring something like fifteen or so stories, and only one was by a writer with whom the editor did not already have a personal or electronic relationship. As "Through Rose-Colored Lenses" is an "immediate future" science fiction and not part of the "Sivil Galaxi" milieu I have been putting most fiction attention on, I didn’t keep up on submitting it to editors. Breath and Shadow is only the second magazine to have reviewed it.
Breath and Shadow comes to the web from Maine. They are a free, none-subscription web-zine, free for the browsing at all times and to all readers.The story is slated for the winter issue, so should hit the world wide web in January or so. I’ll keep the readers here appraised, specifically as the story fits into the Blindsided! themes and subjects more than any of my other stories do.

Caution: Blind Bowler!

Bowling has resumed. It’s one of the last things I can still do at all. Like anything else, I can’t do it as well, but I am lucky to have very patient teammates who sacrifice competitive edge yo bowl with a blind guy who has to cover the Crow Boot with a pillowcase.
To answer the usual and natural questions:
I have enough vision based on contrast of tone, shade and color to see the lane defined. The laminate is a very light wood color and the gutters are dark gray. I started bowling as a half-blind individual with no depth perception, so I always threw a straight ball. I line myself up for the throw and hope it stays straight.
I can see the contrast of the foul line and usually leave myself some extra space. Due to the Crow boot, I can no longer do an approach, so throw from a standing position.
The limitations of the boot are things I have to relearn. I’m not always throwing from a still position. I have to unlearn habits.
My teammates tell me what pins are still standing after the first throw. I try to realign according to pin positions. We hope for the best.
Obviously, I am bowling with some helpful and patient people. That they bowl on a team with me demonstrates good things about their characters. The people bowling for competition rather than a weekly social event aren’t as patient. It all depends on where the individual emphasis is.
I feel awkward sometimes about the heightened need. When my teammates get absorbed in their conversation, I need to interrupt or wait patiently to be told what pins to shoot for. I feel like a toddler on a carousel, waving frantically in demand for attention with every revolution. I don’t see well enough to even be able to pretend to be able to pay comparable attention to the efforts of my teammates or the opposition, and that does trigger twinges of guilt. I firmly believe in all people being equal, with everyone having times when they are a priority. I don’t indulge people who think they are always the priority, so truly hate anything that pushes me in that direction.
I can do as well as I can in part because the nature of it being a competitive sport, the lighting is well researched and planned. Lighting is very uniform, without glare, and never in my eyes. It’s actually one of the more comfortable places for me.
Vision is tougher when I am not actually facing the lanes. People are still shadowy and darkened. Identify individuals more by shape and body language and voice than by traditional ways. I am one of those people who always had a problem with faces, so a lifetime of adjusting to that may have become an asset in dealing with the vision loss. I do not often stray away from my table to socialize unless I am fairly certain who I will be bumping into (which all too often is literal.)
The first week of competition in the Thursday League achieved 83, 102 and 115. That’s certainly not competition for High Average awards, but should be a good enough foundation to realistically build off of as I relearn the sport with my new status quo of limitations.