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.