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.

Doctor Dumbass

Dr. David Greenberg is one of the founding partners and president of Rhode Island Foot Care, Inc. I saw him three times in the winter of 2012. He had been referred by the doctor at Foundry sports medicine, where the Charcot foot had been first diagnosed. Liked the Foundry doctor and that practice. The sole negative I can say about the Foundry practice was that they recommended Greenberg. I heard Greenberg referred to as the best podiatrist in Rhode Island. Maybe that gave me unrealistic expectation. My GP had referred another patient to Greenberg at the checkout desk this spring. I shook my cast-boot covered foot at the patients, told them I referred to Greenberg as "Doctor Dumbass" and urged them to see the podiatrist I later experienced successful with, Thomas Mancini.
While I did not come to think of Greenberg as dumbass until the third visit, I really did not like him from the first. This was a basic consumer issue that I did not feel as though he really looked at the foot or listened to me. Supposedly he had looked over disks containing the MRI scan and X-ray before he entered the room. Am I wrong in thinking that was not enough without an on the spot exam? The MRI was a couple weeks old by that time and the X-ray was approaching four weeks past. The swelling had changed for the worse in that time, and the tendon in the foot had gained much more pronounced deformity. I left feeling as though I had paid for him to arrogantly confirm, "Yup, that’s Charcot foot," and nothing more. Between the Foundry doctor’s diagnosis and my research of the diagnosis, there wasn’t any doubt that Charcot was the problem. He gave advice of the best thing for my foot was to take care of my diabetes and sounded no different from every busybody with diabetic cousins who think the cousin makes them qualified to dispense advice about diabetes.
The second appointment got postponed by Greenberg’s office, and they indicated that one of his associates would see me o the follow up. I had no problem with that, and was disappointed when Greenberg saw me. He at least did look at the foot, in part because the swelling had receded on significant levels. He thought that was a good sign and did not correlate the prednisone eye drop prescription with the healing. My attitude: he is a doctor and should have suspected that, particularly because I mentioned it prominently; my tummy was rolling when I was there, and this had been the first time I had seen him after the retina reattachment surgery..
He was worse this time for being nice. He came across as patronizing, complete with a shoulder pat best reserved for little leaguers who hit a home run. I am not sure if his superior attitude or the prednisone is the true cause of my need to vomit before I left the office. I managed to contain the eruption to the medical waste barrel in the examining room.
The third (and guaranteed last ever) visit was in March. He declared the Phase One of the Charcot foot over and Stage Two healthily begun. He gave me a prescription for an in-the-shoe brace, a print out with choices of where to have it custom made, and no future appointment. Any actual examination was at best cursory.
He officially became "Doctor Dumbass" the day I went to get molded for the brace. The address on his printout had the wrong number on the right street. The orthopedic appliance place said they had moved twelve and had frequently asked Greenberg’s practice to update this. The prescription contained minimal information, and said nothing about the ankle collapse or how that problem had shortened my right leg.years before
The real kicker came in April, when (with the eye doctor’s approval) I stopped taking the prednisone. The leg swelled right back up, proving that Charcot’s Phase One had not passed, but had been disguised by the anti-inflammatory steroid.

Anti-Climax

I know myself and how I can be, and how other people see me as difficult. Primarily, I am brutally honest, which contrary to your mother’s lies, is not the best policy. I do not indulge other people’s egos for the sole sake of their egos, and see my life, even as it is now, as something other than clay for shaping by control freaks. My refusal to blend in with the flock of sheep or take that plunge with the other lemmings leaves me vulnerable to other predators.
I respect other people’s opinions and beliefs, but have found that others get upset in various ways when it becomes clear that respecting other opinions and embracing them as my own are two different things. I do alter my thinking and change my mind, but there has to be logical reasons that change the why of my thinking, not the what that is makes up the thoughts.
Those ways that my odd brain works really sums up a great portion of my almost-automatic disagreement with doctors. I can narrow it down to the differences in attitudes with my GP: he looks to maintain a quantity of life, and I would greatly prefer to have a quality of life. This same thing would cover the from-the-gate difficulty with Dr. Paz at Sturdy Hospital. He was opposed to a Do-Not-Resuscitate" order from someone so young. Put ego in the mix where others thinks their beliefs should automatically apply to everybody, and some level of conflict is as inevitable as neuropathy in diabetics.
I think of these quirks in relation to my last day at Sturdy because a "diabetes educator" came to visit me. I visualize some regular readers or people that know me going pale at the thought of the explosive conflict that must have resulted from such a meeting. No conflict occurred.
There is one major aspect to my personal diabetes care in which I am probably (almost certainly) dead wrong about but have and will stubbornly continue my way. The diabetes educator and I discussed this point with disagreement, but we each maintained enough respect for the reasons for each other’s opinions that no conflict arose out of a difference of opinion.
The diabetes educator did not draw out my more stubborn aspects because she at least listened to the me and the reasoning that developed over near 40 years of living with diabetes.
The diabetes educator was much younger than I. She freely admitted that I taught her a few things about how diabetes was handled long before she got into the field, and some things she quietly acknowledged but "they" were not "supposed" to acknowledge to patients. She dispensed advice, not dictates.
She got called away and was one of the few Sturdy staffers to leave my bedside without fuming from the ears. I was looking forward to speaking with her again, but when allowance for discharge came in that Monday afternoon, I did not wait around for tearful goodbyes. I figured Dr. Paz and the staff had a party to begin as soon as I had left the building.
The lack of conflict seems logical: the diabetes educator understood what I consider a basic fact: you cannot tell someone that the sum of their life experiences is wrong.

Mercy Me!

My co-habitant for my weekend in Sturdy Hospital was imprisoned for an infection of his throat. He worked at a waste water treatment plant, so the staff, as it turned out, had specific concerns about the nature and source of his infection. His doctor–who was not the self-worshiped deity named Paz–was concerned that he might have MRSA. The nurse who told him this in clear hearing of me said she didn’t think that was the case, but that if the doctor was right, they would transfer him to his own room to prevent widespread contagion.
I butted in to ask what that was going to do for me–the guy with a chronic and temperamental illness and an open infection on my big toe who had been trapped in the room with the MRSA for an entire weekend.
The nurse was completely unconcerned about the potential of me catching MRSA from the roommate or its potential to worsen whatever fast-moving, as-yet-unidentified infection that had afflicted me. She told me I had no risk of catching it, but could give no non-contradictory reason why he would have to be segregated to a separate room if he did turn out to have MRSA.
MRSA "mersah" stand for Methicillin-resistant Staphylococcus aureus. It’s a staph infection resistant to the usual antibiotics. Staph bacteria grows on the human body without harm but can go bad if trapped under the skin such as in a boil or ingrown hair or when the body is feeling overloaded with other problems.
Most people "catch" MRSA in hospitals or nursing homes. My concerns were by no means paranoia and I do not understand why my roommate was not sequestered on the doctor’s first suspicion. MRSA is that superbug you leave the hospital with when going in for something more routine. In a setting where the nurse-types are too lazy to rinse urinal bottle, should I believe they are meticulous in sanitizing themselves between patients?
The reverse possibility should have also been considered. At the time of my discharge, the exact nature of my infection had not been determined. How wise was it for the staff to place the roommate in with the surly guy with the unknown and extremely fast-forming toe infection that had gone from being red to gangrenous in two days?
The contagion concern may be the real reason neither of us had our bandages changed in more than a day. It’s certainly easier for the staff to neglect the patients than to thoroughly sanitize every time sanitizing would be called for.
The roommate was also discharged that Monday, and was told specifically that he did not have MRSA. I left without having heard what had afflicted my toe. Only because I was diligent in learning the truth did I finally get results, and not until June 6, a full 30 days after discharge. It was, as was "usually" the case, a combination infection of basic staph and strep. Yes, you can get strep in other areas outside the throat, and even on your toe without having cause to stick your foot in your mouth.

Monday Monday, can't trust that day,

Monday Monday, sometimes it just turns out that way
I will admit to the possibility that I was in difficult mode by then. I try to come across as easy going, but that’s an act I cannot usually maintain for long. This blind guy tends to look for problems once he has seen problems. Sturdy’s staff had provided many to be seen.
First problem: the 4 AM wake up to be poked and prodded. Neither my roommate nor I could get back to sleep that morning. The man-baby was screaming again in his drama queen way, a voice of protest that carried not a hint of actual pain. My routine of calling out belittle commands to "man up, you wimp!" shut him up to the amusement of the nurses and my roommate.
The 4-in-the-f’n-morning wake up demanded of sick, recuperating and in need of rest people became more of an issue when one of the nurse types let it slip that we were woken so the staff could take the end of shift patient vitals. The shift ends at seven.
When questioned about "end of sift," the worker said they don’t have time to do it in the last hour. I asked by what stretch of the imagination could something be considered at the "end" if it did not even fall in the last 25%. She held on to her time constraint excuse and I went into calmly sarcastic conjecture of ill patients prescribed enforced bed rest then woken up at four AM for something by her own admission should be being done at six; that I could hear the staff hanging around the desk idly talking for the last half hour of each shift; and that if she got bedridden with illness I sincerely hoped she would see more consideration at whatever facility she ended up.
I am not a morning person.
In between the wake up and the conversation about shift ending, one of the nurse types emptied the portable urinal from the window sill, again did not rinse it and replaced it to the tray table. My reaction was immediate: "What is wrong with you?!" She did not see the problem, because she had put it where you can find it." I resisted telling her exactly where she could put it in favor of pointing out that if I left it on the window sill I could find the window sill, she did not rinse the bottle, and that I eat off of that table. She began to withdraw, but I loudly insisted that the table be thoroughly cleaned. I suppose that helped make me a difficult patient.
I was not inclined to get better when I heard the big reveal to my roommate: his doctor–who was not the self-worshiped deity named Paz–suspected the nature of his throat infection....

Heparin

Because the staff at Sturdy Memorial Hospital deemed the lame blind guy as a trip and fall hazard to be restricted to the bed, they injected heparin several times a day. This is a sulfur drug intended to prevent blood clots in people kept prone too long, and or have an IV in too long as clots can form at the TV catheter.
One of the nurse types started a conversation on Saturday by remarking that I was not bruising from the heparin at all, even at the stomach injection sites. She explained the heparin in that conversation. I asked if a medication meant to prevent blood clotting could have produced the positive side effect of lower than normal blood pressure. She said it very well could have.
On Sunday, when the bandage from the open and infected foot was finally opened, the previously dry toe abrasion had bled freely for the first time, through a diabetic’s reduced circulation and through the constrictive Charcot foot swelling. I figured the heparin was helping in a number of ways and had no complaints about the side effects.
Side effects of this drug can include fever and chills, which made the whole "cold blanket" debate with the nurses seem pretty sinister on their part, as if they gave a drug with those potential effects to a feverish patient then threatened temperature and anal sensor probing torture for kicks.
The potential side effects of lightheadedness, loss of balance or coordination, sudden weakness and leg numbness seems to make this either the most perfect or absolute worst thing to give someone deemed as a trip and fall hazard.
I am sure that before long, at least some of Sturdy’s staff had been wishing that the side effects of confusion and difficulty speaking or understanding would afflict me. Instead, I stayed sharp minded throughout my imprisonment.
I had no bleeding problems as can be common, including skin discolorations or foreign matter in other bodily fluids. I’m sure some of the staffers were wishing me to bleed due to my constant questions and concerns, which I had no shyness in voicing.
The problem came on the Monday morning when the nursing staff declared they had to draw a lot of blood, not just for the usual rounds of tests but because they had to type me in the event I needed a transfusion. Apparently, my hemoglobin counts and blood volume had fallen. I asked if this was due to the heparin. I thought it was a reasonable question in and of itself, especially considering what the other nurse-type had said two days before. This nurse type became defensive and told me flat out that heparin had no side effects.
I don’t respond well to people who lie to my face. As the next post will relate, that last day at Sturdy started badly and the lying woman just added fuel to the fire of my soul. I not only let her know that I knew she was lying, but questioned if all the blood they had leeched out of me that weekend would have reduced my blood volume, and pointed out that taking "even more than normal" amounts of blood because the blood volume was down is an absolute absurdity.
I was more than she could deal with and she retreated.
Really, in response to my question of the potential heparin connection to the blood volume, she could have said "maybe" or "I’m not sure" and I would have resigned myself to the situation without a confrontation.
Why is it that people who choose to lie react so badly to being called out?

Toeing the Line

After slinking away from my harsh refusal to indulge his god complex, Dr. Paz did call in a surgeon to look at the infected toe.
The toe had brought me to Sturdy Memorial Hospital, but after the Friday Night ER admission, it seemed to be ignored in deference to my being diabetic, and I am sure that the toe’s condition instigated some finger wagging of "bad diabetic."
As a diabetic, my circulation does not equal a healthy person’s. I know that, and also know that the side effect is pretty inevitable. I apologize if you’re reading about the inevitability for the first time here; your doctor may not have told you for fear that you would surrender to the inevitable and not take care of yourself. If you’re diabetic, know this now: doctors lie.
My diabetes was never as bad as my numbers–A1C peaking at 16–say it should be. But I had developed Charcot Foot, which passed in and out of Phase One twice. The relapse of the massive swelling further reduced my circulation and the infection, in most likelihood, would not have developed without the Charcot.
Dr. Paz had obviously warned the surgeon about what a hole I am, without tempering the situational truth with how Dr. Paz himself had drawn forth my rougher aspects. The surgeon approached me with an attitude, even while I regarded his arrival with relief. Unfortunately, the surgeon, whose name I don’t remember in part because he ended up doing nothing, harbored his own god complex.
The surgeon looked over the toe, which necessitated the first bandage change in a day and a half. He looked over the Charcot foot. In his godly wisdom, he decided he would take the infected skin off the oe, and would probe the massive swelling that was the tendon that runs on the inside of my foot. I readily agreed to the former but refused the latter.
"We have to know if it’s infected," he insisted.
Told him that the non-toe swelling had been previously diagnosed as Charcot foot. His willingness to stick something into the Charcot swelling told me that he did not know much or anything about that. "No offense, I said, "but the Charcot is known for getting infected by well meaning doctors who either culture it or try to mechanically reduce the swelling. If you do that, two months from now, you’ll have forgotten all about me and I will be having my foot amputated. The toe needs care, but you are not going to stick anything into the foot."
He must have been thinking "Paz was right. What a hole." Because he could not do everything he wanted to do, the surgeon left me without doing anything, including replacing the bandage.
A nurse asked me about the incident a short time later. I asked he if she had ever heard of Charcot foot. She said she had "heard of it." I emphasized to her that most medical people, like her, had only heard of it and that the highest incidence of foot loss directly from it was when well meaning doctors broke the skin at the swelling. I had researched it and would minimize those risks myself.
I had been told that Sturdy had no podiatrist on duty that weekend. After the incident with the surgeon, one appeared, Martin Harris of Plainville, Massachusetts.
Dr. Harris cut away infected skin, determined that the infection had not reached the bone, and removed the toenail, which had pretty much detached itself anyway. He rebandaged the foot.
He also told me that I had been 100% right in stopping the surgeon from probing the tendon with the clear prediction, "It probably would have been a lot sooner than two months before they’d have to amputate."

Be-pazzled

Day Two of "consultation" with Dr. Paz went differently from Day One. That is to say, it went worse.
I will take some responsibility for being in a peevish mood to start. It was convenient for Doctor Paz to do his rounds at breakfast.
The hospital stay with arbitrarily restricted movements made me understand the boredom of house cats, how every part of the day is an event. The doctor visit should have been separate from a meal, particularly breakfast, which didn’t have much chance of still being warm from the trip from the kitchen to begin with. Instead, Paz arrived right after the food and wanted full attention. Getting medical attention–even the bandage changed–had been difficult enough that it did not seem prudent to ask him to come back later. I have no doubt that being considered more important than food feeds his ego.
The man himself immediately overwhelmed any irritation I had about his timing. I started with a reasonable question that should have been answerable after two days: what type of infection did I have?
He answered, "Well, usually infections like this are..." and he used a $12.00 medical jargon word that meant "multiple sources of bacteria."
I made it clear that I did not care what these things usually are and wanted to know what I had. His response was to ask if I "even" knew what his big word meant.
The arrogant display of God Complex pissed me off. I defined his word for him, pointed out that he had not answered my question, and that my only interpretation was that he did not know.
He said that not all tests had been returned but that the blood culture showed that I did not have a widespread blood infection. His answer to "Why couldn’t you just say that?" was to stare blankly.
He also could not adequately answer my questions about the change in my basic insulin regimen from reliance on time release insulin to total use of only instant-acting regular insulin. He started with generalities about the instant only theories of treatment, but had no answer to the question of why he would make such a change in a patient he had never known. I can and would have readily accepted changes in the amount of insulin, but not a switch in basic regimens.
He basically resorted to manipulation by informing me that if I was not happy with him as my doctor, I could request a change. I told him that I was a proactive and involved patient and that if he could not deal with that, he could assign me to someone else.
I made sure he knew that I expected bandage changes on the infected toe. I had been admitted Friday night and this conversation on Sunday morning had no bandage change in between, I made it clear that the nurses adamantly maintained that they could not do a bandage change without specific orders from a doctor and wanted to know how such a basic thing that was the reasdon for my being in the hospital had been overlooked while less important things like my insulin had been changed.
He resorted back to my options if unhappy with his care.
I was out of patience with the manipulation and the God Complex by then. Fully and completely out of patience. I told him that I had not seen any real care from him and that if his godhood could not deal with patients who asked questions, that he needed to transfer me to someone else and explain the shift to his hospital supervisors, but that I knew he couldn’t do that because "you are not a very honest man."
He walked away from me after that. I know from asking nursing-type staff that he was still officially my doctor but I saw or heard nothing from him for the final 24+ hours of my stay at Sturdy.
My fellow inmate complimented my ability to stand up to a doctor who he agreed had been being cagey in answering questions and wished he could be more like that.
I reminded him that there’s always a cost to being like me.

Feeling an Unseen Presence

Dr. Paz disappeared from my hospital room at Sturdy Hospital that Saturday morning while the prednisone dropped in my eye was making me puke. His inability to find a bedpan for me had proven him pretty useless at the scene anyway.
I did not see him again until Sunday morning, not because of my blindness but because he never came back to finish the conversation or to ask about the sudden and more violent illness. The unsaid implication that astute regular readers may have picked up on is true: NO doctor looked at the infected toe on Saturday.
The toe remained in the same bandage from Friday night to Sunday morning. This seems standard at Sturdy; one of the nurse-type people yelled at my roommate for having changed his own bandage on his wound. He did so because the nurses" had not, and they said they cannot change bandages without a doctor’s specific instructions.
Yis excuse dominated my stay at Sturdy and came off as an excuse for laziness by the staff. I don’t want to call them nurses because I am not sure which were actually nurses, which might be "certified nursing assistants" and which might be volunteer candy stripers. These days there are no differences in uniforms and I would be too blind to probably see the difference anyway.
I was allowed to neither shower nor bathe because they had no doctor orders allowing me too.
My long term insulin regimen of mostly time release insulin bolstered by smaller doses of regular had been completely changed without consultation with me or my GP. This did inexplicably change Saturday night, to further confusion by the "nurses."
I requested whole milk instead of a 1% or 2% because the lower fa milks raise my blood sugar more than whole milk does. That needed doctor’s approval for "cholesterol concerns."
The doctor, presumably, had also disallowed further blankets because of my fever. I could shiver violently and be denied further comfort. On Saturday, while I was afflicted with one of my violent fits of shivers, they told me that they would have to wrap me in a chilling blanket that would have a temperature sensor up my rectum if the fever did not break. I told them to dole out more (and real) aspirin for the fever because the cold blanket thing was not going to happen. When they said the blanket was "doctor’s orders" I told them clearly and sincerely that if such a thing were tried, more than the temperature sensor would end up deep inside someone’s rectum, and it would not be mine.

Reaching for Godhood

I think it is almost inevitable that most doctors will eventually develop some element of a god complex. Their jobs lends them authority over their patients. Most patients grant the authority automatically, and the unearned power over other people develops automatic assumption of power over other people. The phenomenon also readily overtakes people in other professions where power and authority is granted without the need to be perpetually earned, including judges, police, teachers and parents.
I expect little agreement with this thought, but I think authority figures need to continuously earn and prove the worthiness of their power. When they don’t, you end up with burned out teachers, abusive cops, corrupt judges and Morgan Stanley CEOs who collect multi-million dollar bonuses after losing billions of dollars.
I don’t have much patience for teachers who patronize adults like children I more often want to slap control freak parents in department stores than the children they ride and deride. I do not deal well with doctors who think it is enough to issue orders without thoroughly discussing all aspects of the instructions or prescriptions with their patients. I’ve stayed with a GP who has this problem, though he and I have long since wondered why the other bothers at all. In my mind, it’s a place other than an emergency room to go with a minor emergency. In his mind, I am sure that I have not been a deadbeat even as a self pay patient factors in. I have always been able to manage my GP’s personal level of God complex, in part because he does show some appreciation for my blunt honesty. That honesty has usually manifested as incredulous sneering laughs or open refusals when I have completely disagreed or knew I would be unable to follow through with specific aspects of prescribed treatment.
While in for a massive and sudden toe infection at Sturdy Hospital over the first weekend this May, Dr. Paz realized pretty quickly that he had not acquired a new worshiper.
I had seen problems at Sturdy despite my blindness, so maybe I was looking for other problems. I’ll accept some responsibility for the difficulties without getting into specifics of Doctor Paz’s upset that while he was the most educated, he was not the smartest person in the room that weekend. By the time the problems at the hospital had mounted, I was certainly more than a little cranky.
Why I don’t think I was wrong in the situation: I was arguing on grounds of treatment of care; Dr. Paz was reinforcing his God Complex to someone who wasn’t ever going to be drinking the Kool-Aid.

The Smaht Guy

I have to make a statement that I don’t like making. It sounds arrogant, and I do not believe myself better than anyone else when each individual’s strengths and weaknesses are tallied.
I am often–but far from always–the smartest guy in the room.
Intelligence has not gotten me all that far; I have a permanent disconnection to other people in general and this can make it hard to utilize specifically. I have intellectual friends, and friends whose company I greatly love without ever really noticing that they are not what the "smart crowds" call my type." I have low standards: if I enjoy the company and get a few laughs out of time together and the other person is of good character, I make friends without worrying too much about common interests.
I try not to use big words, although guess at times I underestimate how big some might be. Particularly in my time as a property manager, I developed a "Schneider the Super" persona in large part to keep people in my solidly working class neighborhood comfortable in our interactions.
My intelligence is not just empty book smart leaning towards "greater" philosophical leanings. I seldom find people like that top be very practical. The intelligence I have, however, is intuitive, creative and analytical. Those applications lend themselves much more broadly than sheer intellectualism.
This can be a problem for people sometimes. People who think they’re smarter than they are often develop problems with my casual from-the-hip attitude. Those who need to derive a personal sense of superiority from their intelligence often develop problems with me. I’m no better than anyone else, but I am no worse either. I have never had much patience in inflating anyone’s ego, power trip, or God complex.
Usually try to just let the world tun as it may until something I perceive as a problem crosses my personal lines in the sand. I’m not quiet or submissive after that happens.
During my stay at Sturdy Hospital, I was the smartest person in the room for the entire imprisonment. Worse, my movements were restricted because I got labeled as a trip and fall (thus lawsuit) hazard. Add to this that a blind guy, as I have learned, is often considered with the same regard as a piece of furniture in the room.
Blindness is confused with stupidity. When I complained that the portable urinal had not been rinsed out over the entire weekend, the nurse questioned how a blind guy could know that. I heard the pour into the toilet, the flush, and the steps back to my bedside, but never heard any water running or bottle filling or being re-empties. That is not rocket science.
The piss bottle became the foundation of a difficult hospital stay. I definitely got the impression that "my problems were twofold I was smart enough to know what was going on around me, and uncouth enough o question it.
I maintain that I was simply paying attention and taking an active role in my treatment. It turns out–yet again–that doctors don’t like that.

The Round-up

A major intent of this blog from, the beginning was to share information in the hopes of helping other people avoid some of my mishaps.
The key piece of information that cannot bear repeating enough is that boner pills such as Levitra, Viagra, and Cialis can cause permanent blindness.
The way this blog has been searched and found indicates that my experiences over the last few years almost places an obligation on me to give a less detailed but more thorough review of retina specialists in Rhode Island and New England and eye doctors who practice retina specialties.
My last post hailed Magdalena G. Krzystolik and I can recommend no one above her. Reasons include technical ability, integrity, honest communication with the patient and the fact that she demonstrated more interest in me as a patient than in patient payment. While educated here in the U.S., she was born in Europe and seems to lack American capitalist priority.
The other absolute positive referral should also be listed fist: Heinrich Krosschell. He is not a specialist but a general eye doctor. He himself knows this limit. He can give you general views by his experience but will not hesitate to tell you when a problem is beyond his scope. This honesty over both ego and profiteering earns him a lot of my esteem.
I saw two doctors with Koch Eye Associates. I recommend neither, nor the practice. Michael Negrey gained some points for looking into what could have been a thyroid problem, which others might criticize as unnecessary testing. He loses all regard however, because he has such a God Complex over his patients that he failed to communicate to me about most aspects of the cataract surgery. If I had been given the option of a lense that would have allowed close up vision, I would have a higher quality of life these days. Negrey made those decisions for me without consultation. He also utterly failed to inform me that the cataract procedure posed risk of triggering retinapathy. He failed to inform me of this despite knowing that one of his associates, Dr Michael O’Brien, was performing PRP laser treatments on me in the same time frame. Dr. O’Brien also did not inform me of the serious risk factors of the procedure he performed, including the fact that the procedure is almost guaranteed to cause at least some level of what it is supposed to prevent. O’Brien’s bedside manner was wonderful, but evoked the warnings of smiling at crocodiles. He scared me into the PRP due to the Cialis induced vitreous hemorrhage, despite being told that other retina specialists had willingly forestalled any such treatment after havin done multiple examinations of my eye. He seemed to care only about being a productive employee to Koch’s billing department.
Dr. Harold Woodcomb was one of the retina specialists who thought is safe to wait rather than rushing me into PRP laser. I saw him for a period of years and defected only when disillusioned by his failure to even consider the (documented) possibility that Cialis caused the vitreous hemorrhage. In hindsight, I probably should have stayed under his care rather than roving to people and practices that did more harm than good.
I had been seen once by a Dr. Smiley in Woodcomb’s Providence office. He attempted scare tactics to roll me into immediate PRP surgery. I can find little direct information about him as he seems to have disappeared. He no longer seems affiliated with Woodcomb’s practice and may be the Dr. Smiley working in California, but I am not sure of that.
I submitted to treatment a the Joslin Eye Center in Boston. They charge a lot of money, but no aspect of the care itself seemed to warrant their reputation as "best in the world." Dr. Deborah K. Schlossman barely examined me but added notes to my file that claimed to have informed me about things she never mentioned. Dr. Paul Arrigg seemed much better, but he strung me along for months with plans for procedures that it turned out he had no realistic intention of ever doing. In those months, the retinapathy worsened. If I had the reattachment done sooner, the outcome probably would have been better.
Prior to the hemorrhage, I had trusted my routine specialist care to John Loewenstein at Massachusetts Eye and Ear Infirmary. I sought treatment there also under gullibility of world class reputation and ceased treatment after learning that I had other developing conditions in the eye that Dr. Lowenstein could not have been bothered to indicate to even the slightest degree.
I saw Dr. Arthur Geltzer in Providence in 1998. He was one of many doctors who used the "I do this surgery now or you will be blind in six months" scare tactics to get my money. With the experience of the past few years, I believe more than ever that if I had done the surgery then, I would have been blind in six months and then been told that I waited too long to have the surgery.
Patients need to run from any doctor who uses scare tactics, particularly the six month line.
A search through the blog will lead to more details about my experiences with most of the docs and quacks on the list.

Rocks and Hard Places

I’ve run a gamut of other problems since January’s reattachment surgery. I’ve discussed the cause and effects of the prednisone that I needed to drop in my eye. Prednisone is a steroid that is as much miracle drug as aspirin, and it is the only medication I have ever taken that has given me bad effects.
Discussing the bad effects with the eye doctor who did the surgery and prescribed the prednisone seems to have extended my reputation as a bad patient. That doctor insisted that the side effects I was feeling, particularly the nausea and vomiting of excess stomach acid production, were signs of other diabetic problem. I’m not such a believer in coincidence, given the timing of the problems’ onset. The doctor insisted that the dose was small while ignoring any research I has asked about that cited eye drops as one of the most potent absorption of medication. After two months of discussing this with her, I got allowance to discontinue the medication.
The side effects subsided. I can only wonder what has happened to medical training that every doctor argues with me when I report and effect of some sort of treatment. I simply pay attention to how I feel and what is going on with my body and the timing in which things change and develop. Why does this make me a difficult patient?
My blood pressure plummeted, the nervous tics diminished, vertigo became less of an issue, and my stomach seemed to pump acid back at normal levels, enough that fruit and proteins were not making the tummy erupt. The timing of improvement coincided exactly with the discontinuation of the prednisone, so I can only beat my head against a wall and wonder why every such thing had to be an argument with almost every doctor. I don’t claim to know more or be smarter than the docs. I just pay attention to my body and report what things do to me personally rather than generalized statistics.
My follow up with this good eye doctor is tomorrow, but I have already resumed the prednisone. As it turns out, the steroid–and not times, inactivity following the reattachment surgery, or another factor–caused that sudden recession of swelling in the Charcot foot. Pain and swelling both resumed with a vengeance. It’s worth the ill effects to have the legs slightly more usable.
My eye and foot doctors alike just need to be prepared for a difficult patient if either or both try to tell me that the leg condition is caused by something else entirely and that the timing of stopping and resuming the prednisone is strictly coincidental.

As Seen on TV

A friend told me he had seen an ad or feature on local TV for Koch Eye Associates. Dr. Koch himself appeared with a young female lawyer who had already had twenty-two sessions of PRP (Pan retinal photocoagulation). I had a total of six sessions.
I did not see (or hear) the TV spot myself, but what little I was told about it raises questions I find frightening on one level or another.
The mercenary question: how many rounds of global coverage did the patient pay for?
Did the patient have any visual signs of problems with her eyes before they started firing the lasers? How much of the follow up sessions were necessitated solely by the initial sessions?
Was the patient a self abusive diabetic who brought her medical ills on herself, or did she simply get scared into the claims of a doctor that she would be blind in six months without the surgery? I had been told that line several times in the decades before I got scared into the procedure by the vitreous hemorrhage.
I am aware that elements of my readership and circle of friends think I simply point fingers when it comes to my medical travails. I accept that. The opinions I have formed through experience do tend to buck the system of medical authority. I can go only by my own experience, which includes too much "coincidental" timing of things going wrong after doctors or their drugs tampered with imperfect but stable situations.
The vitreous hemorrhage would have healed with time. My handicap two and a half years later is unrelated to the blood burst. I saw marked decline in my vision immediately after the third PRP laser session. I cannot read or see close up details because Koch Associate Dr Michael Negrey possesses too much of a God Complex to even had told me that different lense options were available. Today, I cannot see far away because of the retinapathy, and I cannot see close up because the artificial lense in my eye is not meant to allow close up vision.
If a patient already had perceptible vision loss, due to retinapathy, I do not advise waiting for the procedure. Experience indicates to me that even retinal reattachment surgery is better done soon than later once the problem escalates.
My warning is for people who might undergo PRP based on a doctor’s say-so, particularly if the doctor uses the scare tactic that you will be blind in six months without his godly intervention.

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.

Arrigg-ance

I remained a patient at Joslin Center’s Eye Clinic for multiple visits from early Summer 2010 to late summer 2011.
Dr. Paul Arrigg saw ne on the afternoon of my first visit after I had been abandon by Dr. Deborah Schlossman ’s urgency to leave for the day without a full address to the concerns of a patient with serious multiple problems.
Arrigg made me feel listened to. On that first day, he gave careful examination to the left eye, which Schlossman had not.
I also learned some private emphasis on the value of second opinions. He did not agree with all of the assessments that Schlossman had recorded but had not discussed with me, including lifting restrictions.
Here’s the catch: while Arrigg listened, he did not necessarily communicate. He went over issues with the left eye, but he did not want to explore options he thought were necessary or might become necessary. Simple truth here: eye doctors do not like doing risky procedures on patients who have only one functioning eye, because of the surgery just doesn’t work, they can be held responsible. I understand that. I just want all the information up front so I can make an informed decision. If the procedure were to go wrong, O wouldn’t complain or sue unless the doctor had been drunk or grossly incompetent. My complaints about O’Brien and Negrey at Koch lie entirely that I was not told of the risks, and I feel that they withheld information for the sake of their company’s profits.
Arrigg’s approach could not satisfy or placate me over time. I have an almost psychic ability to sense lies or holes in a story. I’m also smarter than I ever found particularly useful and am very good at filling in the blanks with considerable (but not perfect) accuracy with minimal information.
The important thing to me is to be receiving accurate information. This has always been a quirk of mine in professional contact, relationships familial, romantic and just casually personal, and any other aspect. You don’t have to be nice, just be honest and forthright.
Arrigg fir more of the pattern of the great listener who tells you what they think you want to hear rather than what you need to hear. He would, among other things, continue conversations about my medical state with other doctors after they had walked away from me.
He outlined an overall plan that may have been Schlossman’s original but uncommunicated intention: he wanted to do cataract surgery and retina reattachment on the right eye and then so r4etina reattachment on the left eye. We moved in that direction including with Sonograms of the eyes that were massive overcharges in comparison to the other two facilities where I had the same procedure done. I was eager to proceed with anything that might give me some restoration and prevent further deterioration in the left eye.
Dr, Arrigg was not so gung ho about it. Maybe grin prognosis, unguaranteeable results and cost to this out of pocket patient for something with a potentially negative risk benefit analysis. He’d hinted during prior visits, but finally said in Summer 2011 that he absolutely did not want to do any surgery and said I would be better off staying closer to home for my treatment.
On my own again.

Rights to Records

I first went to the eye clinic in Boston’s Joslin Center during the summer of 2010. The new course of treatment I had planned did not start well. Records I had sent in advance were missing; Doctor Deborah Schlossman met with me long enough to only make a future appointment to coordinate procedures on the dark-blind eye in coordination with another doctor and had sent me on my way without discussing the more immediate problem of my faltering left eye. I was not dissatisfied with that situation and let the desk know it. As far as IU was concerned, I had not been treated or examined for the problems I had gone there for, and I insisted on seeing a doctor who would actually treat me. They accommodated.
This took time. I ended up at the clinic for hours, mostly waiting in an examination room while doctors with their own caseloads had to accommodate for Deborah Schlossman’s rush to leave for the day at lunchtime.
The time alone in the room with the records Schlossman had created showed me that Schlossman’s misconduct exceeded ordinary laziness.
She had stated in those records that she had discussed the left eye with me, including a notation that she had told me not to lift anything heavy.
That detail could have sent me berserk. I had been told nothing of the sort, I had been trying to get back into my work, which often included physical exertion throughout the day. Such a note had been put in my record without it being discussed with me; I did not even know what her definition of "heavy" would be or what limits I should try to impose on myself.
The take away for the readers here is this: you have every right to access your own medical records. You should exercise this right and be aware of what your doctors are not telling you, as well as things they might add only in a way that might make it easy to forget among the course of a longer examination.
If the doctor or facilities deny you this right or want to impose additional hefty fees for this, you should start looking for other treatment. It will only get worse from there.

Summer 2010, My Golden Age of Blindness

Through Spring, Summer and Fall of 2010, my vision got steadily better as my eye recovered from the Cialis-induced hemorrhage. The retinapathy that started with the PRP treatment advanced, but stopped at the border of the artificial lense put into my eye to fix the cataract. Glasses helped me read again, an ability I’d lost because Dr. God had, without patient consultation, chosen a lense that did not provide any close-up vision. Reading would never be comfortable, but I convinced myself to be grateful that I could do it all.www.kozzi.us.)
Combined with the dark-blind right eye, the loss of peripheral vision rendered me permanently legally blind. Nothing makes up for the loss, but with difficulty, I could function.
The retinapathy in the left eye darkened the vision to a circle, giving me tunnel vision.
Focusing also became a permanent problem. Changes in lighting required a long adjustment time, and angle of light could prove problematic. The artificial lense of the cataract surgery delayed distance refocusing. Change both distance and light at one, and I became pretty useless for a while.
I could drive without too much of a problem. The further away I focused, the wider the opening of the tunnel appeared. At that point, it became easier to drive to the supermarket than to walk around inside it. I could not see anyone who stepped beside me, so when I step to the side, I collide. Refocusing on reading labels to walking down the aisle requires time. I took to getting out of others’ way, letting crowds pass to avoid bumping into people and to maintain some buffer of personal space. The harder I tried to stay out of the way, the testier I got when other people keep getting in mine. That frustration has not eased with time.
At bowling I had to maintain focus on the pins. Checking the scoreboard displays triggered an extreme change in both light and distance that made my next frame suffer. I got in the habit of asking how the game was when each game finished. My bowling seemed to improve for the lack of self distraction.
I looked at the time since the hemorrhage as completely lost time. I worked as fast as I could on my fiction writing and on my other responsibilities. It did not take long to learn that "as fast as I could" fell short of my desires. I concentrated on short stories. Some of those written in 2010 have already seen publication. Publication can take a long time under the best circumstances, so I take great pride in how quickly "Advance Gratitude," "A Pediatrician in Wartime" and "The Thirteenth Day on Kurko" found homes in paper pages. (Shameless plug: those three and other anthologies can be found for purchase on my home site
The other consideration at that time remained medical treatment of the eye. With the eye already a mess, I knew I could not go without close monitoring. I did not wanted the situation to get worse....

For Better and for Worse

I dud not return to the Koch Eye Associates offices after the exam that followed the PRP session on 2 February 2010.
I felt like income rather than a patient. I received no answer to my questions about the onset of retinapathy during a series of procedures meant to prevent retinapathy. I had not been told that both the PRP procedures and the cataract operation posed risks to retinapathy development. I could not ignore that the retinapathy advanced and the "trusted" doctors who increased my risk factors had neither warned me about those risks or did anything to actually help.
From February to June 2010, things got better and worse. I was in denial that I was permanently legally blind. By April, I was trying to work again, with very limited success and a few glaring failures.
I think it is important that I kept trying. I’m a fighter and was unwilling to surrender.
The cloud of blood left behind from the vitreous hemorrhage of the previous October did slowly diminish in this time. The more active I became, the faster it seemed to heal. I resumed sleeping in bed rather than the recliner. Things were fuzzier when I woke due to a different angle of separation between blood and vitreous gel, but the obstruction reduced. I got to my optometrist–an eye doctor I could trust, Hendrick Krosschell in Attleboro Massachusetts–and did get reading glasses that worked for a time.
Unfortunately, as the vitreous gel healed, the retinapathy worsened. Flashers and wavy floors became routine plagues. My central vision in the one good eye cleared, but the overall vision reduced to just that central vision. I could see what I was looking at, but only what I was directly looking at. The peripheral had darkened and closed in to the borders of the cataract.
I could drive, with limitations. I really had to know where I was going because I couldn’t be extending my vision to check the surroundings and focus on the road. Because the cone of vision was wider at distances, it was actually easier to drive to the grocery store than to navigate among bustling people inside.
I clung to gratitude of what I did have instead of focusing on what I didn’t.
Despite the public demeanor, inside I seethed. I still seethe over the situation. Maybe this is some hindsight tunnel vision, but this was done to me. With more complete information, I would have made different decisions. I seethe even more because it continues to get worse.

What PRP taught me

The flashers started after the third PRP session. I told Dr Michael O’Brien about them and got no response, no reassurance, and he went ahead and did three more sessions. By the end of the sixth session, I suspected that my periphery was closing in. Both these symptoms indicate retinapathy that the PRP treatment was supposed to prevent. Both are also well documented side effects of PRP treatment.
So what is the point of calling the doctor right away, as instructed? It had always been my intent to do PRP when I perceived retinapathy problems, not when some doctor told me I had problems. The hemorrhage changed that and I let myself get scared into it on the chance that I was wrong about the hemorrhage being caused by the Cialis. I’d been warned and threatened and scared about retinapathy so many times that filtering the legitimacy from the profiteering scare tactics could not be done.
I was pretty sure I was right about the hemorrhage, but I am not arrogant enough to refuse to entertain the possibility that I was wrong.
While O’Brien showed no God Complex–probably because Dr. Michel Negrey’s God Complex left no room in the Koch offices for anyone else to compete–I do, however, think O’Brien and other doctors need to think more about performing PRP procedures before doing them. Doctors need a little less confidence in their own certainty. They need to listen to their patients more and listen to the drug reps and medical equipment salesmen less.
I had been told three times over fifteen years that I would be blind in six months without PRP surgery. Not one of those three different doctors mentioned the risk of causing the precise thing that their profitable procedure should prevent.
None
All three
Doctor Michael O’Brien, who finally did the procedure, had not needed scare tactics. The blood from the Cialis-induced hemorrhage had me scared enough. O’Brien only needed to exploit minor reasonable doubt about the cause of the blood.
O’Brien and the others are still making money shooting lasers into other people’s eyes while I descend ever more rapidly into darkness that leaves me without means to earn funding for the next medical bill.
This is America. Medical treatment is a for-profit business.
Buyer beware.
I do not mean to discourage anyone who needs the treatment.
I do mean to have the information out there for the people who don’t need it, for people who might be easily scared by the threat of blindness in six months.
The patient should be the primary decider, and he needs to be honest with himself. If he is not seeing the signs himself, he should have his eyes checked no less than every six. The first time he notices wavy lines or loss at the peripheral or dancing lights in his eyes, he has nothing to lose from the procedure that could possibly salvage his vision before further loss. were far more concerned in scaring me into a procedure for a hefty fee.educated me on warning signs to watch out for.