Crouse PromptCare = Diagnosis + Cops

I went to Crouse PromptCare at 11:15 a.m. Signed in. Did not get called to check in with insurance, etc.

At 11:35 a.m. got called into a treatment room with Peter, a nurse. He couldn’t get blood pressure but did get (normal) oxygen and temperature.

Shortly thereafter got student physician assistant who looked at the hundreds of large blood spots on my legs and ankles. Ruled out bedbugs, fleas, scabies, laundry detergent and drug allergies.

Shortly thereafter got physician assistant. I asked her if she knew I had SEID/ME (systemic exertion intolerance disease/myalgic encephalomyelitis). Yes, she said, she knew I had chronic fatigue. This constitutes a loud and aggressive declaration that she had no idea how complex and serious SEID/ME is. She is dismissing it as nothing of consequence.

She announced the blood spots were petechiae-something. Said she would order blood work to look at autoimmune disease, kidney trouble or bleeding disorder then she would transfer me to the Emergency Room. I respectfully decline the ER but did ask for the blood work. I asked her how long it would take to get the results. She said an hour to an hour-and-a-half.

I say, “After the blood is drawn then I’ll go out and have lunch and come back.” It was noon. Because of the ME/SEID, my blood sugar may climb to over 600 if I don’t have lunch at noon. The Joslin Diabetes Center attending physician doesn’t understand that; there is absolutely no point in trying to explain it to an urgent care PA.

She says, “No. You cannot leave the waiting room. If you do then you will have to go out AMA.” WTF? I was not aware that asking for a diagnosis meant I was being taken prisoner.

I ask her to give me a scrip for the bloodwork and I will have it done at my own lab. She refuses.

I state that I am going out AMA. I leave, then return. There is a group of about eight employees standing around and the PA who saw me is loudly telling them all about me. HIPAA, HIPAA, HIPAA. The staff think nothing of spreading my business amongst all of them, though they wouldn’t tell a stranger. There is no discretion, courtesy or respect for privacy among them.

I ask to have the ID bracelet cut off and am told that will be done at the front desk. I return to the front desk, the bracelet is removed, and we establish that I don’t have a (pink? green?) discharge sheet because I am going out AMA. I never was given admitting paperwork to fill out in the first place. I think about the group in the back getting the PA’s version of our encounter. I want my version on record, too, so I tell the clerk I’d like to see whoever is in charge.

She offers me the telephone number for “guest relations.”

I say “I am not a guest; I am a patient.” Nobody treats their guests this rudely; the medical industry does treat its patients like this.

She says, “Well, that’s what we call it.” I am bloody sick of things being called what they are not. I insist that I want to see somebody on-site with authority. She leaves, then comes back to tell me that “all the supervisors are in a training session.”

I tell her I don’t believe her. The physician assistant who saw me is the highest ranking staff person on the premises? Either the clerk is lying or that’s an irresponsible way to run a business.

The clerk leaves again. When she comes back, I ask her to give me the “Petechiae-something” diagnosis in writing. She refuses because I am going out AMA. What?! The PA made the diagnosis but won’t write it down? The clerk mentions that Security has been called, so I leave, pursed by a big guy in a uniform.

I go to Dunkin Donuts, get a chicken salad sandwich on a croissant roll and call my doctor’s office (he is out of the country) and tell his PA I’ve got lots of big petechiae. She rattles off a list of tests she will phone into my lab. Later I go to the lab, have the blood drawn, and will go back today to get the results.

There now, that wasn’t hard, was it?

It was all about Crouse’s attitude toward a complete stranger, and their complete ignorance about myalgic encephalomyelitis. After spending 104 days in Crouse Hospital in 2013, I established beyond any shadow of a doubt that there is no one working at Crouse who knows what myalgic encephalomyelitis is, or wants to learn. If they did, they would have treated me better.

I needed a medical professional to actually look at my legs, but my doctor and his PA were out of reach so I went to Crouse’s PromptCare.

I certainly hope I learned my lesson.

Posted in American medical industry, chronic fatigue, Medical care, Values | Tagged , , , , | Leave a comment

Related Management’s Reply

Good afternoon Ms. Woodlen,

We are aware of the unfortunate that occurred yesterday and are thankful that there were no injuries to anyone at the site. One of our experienced maintenance team members responded to the emergency call and completed a conference call with the entire management team, including myself following the safe end to the emergency. I’m sure that it was an upsetting situation for all our residents and must have been frightening to see the smoke past your window. Please allow me the opportunity to respond to your other inquiries as follows:

It is unfortunate that one of the two site elevators is out of service and will remain out of service for a while longer as the repairs required are rather extensive and took a tremendous amount of time and effort to trouble shoot and identify. Sadly, the repair is going to necessitate removing the elevator car, digging out the elevator pit to some extent and replacing equipment. We are trying to schedule the repairs so that it disrupts the residents as little as possible (it is going to be quite noisy and labor intensive). Engineers are currently finalizing the scope of work so that we can proceed with the repair/replacement.

The front door of the site is functional, however, it does have a broken opener, which means that the door needs to be pulled closed. There is signage on the door providing instructions as to temporary door operations until the repair can be finalized. The new opener was ordered on March 24, 2015, the day that the service technician responded to the site, which was the same day the issue was reported to the office. Due to the 4 week lead time for the part required to restore the door to full operation it will be arriving this Friday (4/24) and will be installed the same day.

We share your frustration about our inability to find qualified candidates for the vacant porter position. Of the 87 applicants who applied for the position only 7 were either eligible for consideration or completed the applicant process. We are aggressively interviewing for the vacant porter position, but in the meantime we have a cleaning company who is coming to the site a few days a week to assist with the maintenance of the bathroom and hallways.

We take all our residents’ concerns, suggestions and comments seriously. As you may recall, Ms. Betty Perry, Regional Manager flew up on February 11, 2015 to personally meet with you and other members of the Tenants Action Council to discuss your concerns and to find amicable resolutions to your comments. During this meeting, we discussed among other items, snow removal and the transit buses that service McCarthy Manor resident, the heating expense experienced by some residents and the resident pond located in the lobby. As a reminder of items discussed, please see the following.

This winter has been especially difficult to the severity and length of the storms and the extreme frigid temperatures that simply did not allow a thaw to occur during the various storms. The maintenance team worked diligently to ensure snow removal was performed timely and adequately, but there were times during the middle of the night where we had to allow the maintenance team members to rest before reporting back to work in the early morning hours to resume snow and ice removal. We acknowledged that this may have been inconvenient for a few residents who walk their pets in the middle of the night and provided some alternative recommendations.

We called all the various transport buses that service McCarthy Manor and confirmed that all providers found the snow removal was adequate and did not prohibit their ability to service our residents. We did have a few drivers state that because we offer a larger transport area at the back of the building, they have chosen to use the rear of the building to address safety concerns. This is driver call and we cannot mandate a third party service providers’ protocol.

As we advised you previously, we acknowledge that the pond area is in need of a cohesive and managed plan. We did locate an experienced person in interior fish ponds and have secured his services to address our pond issues. He has inspected the pond and will be forwarding us his recommendations to address the odor that is occasionally occurring in the lobby. Upon his rehabilitation of the pond, we will be advising residents that their personal efforts to decorate the pond area will have to stop so that we can manage the pond from the management office in a manner that is tasteful and appropriate for interior ponds.

We work with all our agency and municipal partners to ensure our residents are provided the best possible service and will continue to strive to meet your expectations. As always, you are welcome to reach out to the McCarthy Manor management team and will be happy to communicate with you to provide you responses and/or the status of any concern or suggestion you may bring to us.


Jessica Chiamulera
District Manager
Related Management

Posted in Government Services, Housing, HUD-subsidized housing, Poverty, Power | Tagged , , , , , , , , | Leave a comment

A High-rise in Dubai; a Fire in Syracuse

Yesterday there was another McCarthy Manor fire, this time two apartments directly below me.

What was not reported in the newspaper article is that this eight-story building, located at 501 S. Crouse Ave., is home to 176 people, more than 90% of whom are disabled, elderly and poor. It is a HUD-subsidized apartment building.

What also was not reported is that it only has two elevators, one of which has been out of service for about two months. Additionally, the front door has been broken open for several weeks, thereby giving us no security, and has been broken closed for about three days, thereby preventing us from entering or exiting the building.

If there had been a need to evacuate 176 disabled and elderly people–about 50 of whom are in wheelchairs–through only one elevator and one door, the consequences would have been devastating.

The fire was in apartment 623. I was asleep in my apartment, 823, when the fire started. All my windows were open. I awoke, confused and afraid, to smoke billowing up past my windows.

McCarthy Manor is owned by Related Management (, an extremely wealthy company with properties all over the country and the world (including Dubai). Related purchased McCarthy Manor about four years ago and has let the property drop in safety and security.

I have had multiple conversations with manager Dana Natale, and her supervisor, Jessica Chiamulera, located at Parkside Commons on Fayette Street, and the state supervisor, Betty Perry. Related’s senior vice president in charge is Hector Pinero in NYC. Pinero refuses to accept or return phone calls. Perry’s repeated excuse is “I’ve only had this job a year; it didn’t happen on my watch and I’m not responsible.”

The McCarthy Manor superintendent–known only as “Shi”–is responsible for snow removal. He did such a piss-poor job that Centro’s Call-a-Bus stopped picking people up at the front door. People in wheelchairs had to go out into the snow-narrowed street to get the bus.

The heating bill for these one-bedroom apartments is figured at $71/month. In fact, I am paying about $150. Another tenant has been heating his apartment with the oven and is paying about $300/month. A third tenant has photos of ice on the inside of her windowsill. About six years ago, the building was rehabbed, including new windows, and then sold to Related. There are major drafts around my windows. I think that the windows were not properly insulated when they were installed, and now the tenants are paying for heat that is going out the window. All winter my thermostat was set at the highest level—85 degrees—in order to get the room temperature up to 70. I am paying for my heat to go outdoors. Related refuses to do an energy audit.

In the lobby, there is a pond containing koi fish that are about a foot in length. The water level dropped about a foot. There often was a serious stench. The plants surrounding the pond were allowed to die from lack of watering.

The maintenance staff consists of three people. The porter retired last year and was not replaced for a long time. His replacement only lasted about three months. The porter’s position–which is the person who cleans the bathrooms on the first floor, the glass doors, vacuums all the hallways, etc.—now has been vacant since before Christmas. The manager is not allowed to hire. Applications have to be vetted by Related in NYC, which apparently is so busy building in Dubai that they don’t care what happens to their tenants Upstate.

I have filed complaints with Tom Druelinger, project manager in HUD’s field office in Buffalo. He takes no action except to forward the complaints to CGI, HUD’s subcontractor for complaints. CGI, located in NYC, does not listen to tenants’ complaints. Their young call-takers are in a New York City state of mind and they repeatedly interrupt old sick people who are trying to explain that there is a problem. Lacking all essential information about the complaint, they then routinely find in favor of management.

Where am I supposed to go? Who am I supposed to talk to in order to get Related to fix the problems in this building and bring it up to standard?

Are 176 sick old people to be allowed to die in a building with only one elevator and one exit? That is the question I asked myself yesterday as I hurried to close my windows against the smoke.

Please investigate and report.

Anne C Woodlen

P.S. A tenant recently was evicted. He has been hanging around the building and, with the door standing open and no security, did he come back in and start the fire? Who knows? Who’s asking? Apartment 623 was vacant and being rehabbed.

P.S. 2 Fire Chief S. Cavuto reports that the NYS code says that an apartment building only has to have one functional elevator. There is no stipulation as to whether that’s for 30 apartments or 300. He calls that “unacceptable.” I agree. There have been two fires at McCarthy Manor in the past 15 months. One was two doors down the hall from me and the other was two apartments directly below mine. Chief Cavuto and I discussed the horrific image of his fire fighters carrying dead bodies out of the building.

Related Management, are you paying attention? HUD reports that you are trying to find the money to fix the elevator that has been broken for two months. Try borrowing it from the account that’s being used to build the high-rise in Dubai.

Posted in Death, disability, Government Services, HUD-subsidized housing, Poverty, power wheelchairs, Powerlessness, Values | Tagged , , , , , , , , , , , | Leave a comment

The Time Warner Way (Part I)

My father was a college professor who had five children and an old 14-room house: he knew how to fix things. I grew up watching him analyze broken stuff and then figure out how to fix it. If it was a broken floor lamp then you started by checking out the lightbulb, followed by the wall outlet, the socket and the wiring. When you had located the source of the problem then you fixed it.

Time Warner came to fix my telephone this week. Actually, they came twice. In the same day. They don’t use my father’s method.

My phone hasn’t been working right for months. What it does is drop the first few seconds of every phone call. The phone rings, I pick it up and say hello, and I hear nothing. I say hello louder. Then I yell “Hello! Hello!” Then the caller says hello. The caller hasn’t heard me for about the first 20 seconds.

I live in a HUD-subsidized secure apartment building, which means that a visitor has to ring up my phone from the vestibule in order to gain entrance. I answer my phone, then press 9 to release the door catch so my visitor can enter. Except that that is in the first 20 seconds so the door doesn’t get the message to open. My visitor and I have to go through this rigmarole about three times before s/he can enter.

Of course, I called Time Warner. The customer service girls repeatedly told me to unplug the phone, wait five or ten minutes, then plug it back in. Well, this worked, although I had to do it every week or so. In the beginning. In the end, i.e., the past two or three weeks, I’d have to do it every other day.

There were two problems with that: first, a month ago I had a myalgic encephalomyelitis (ME)/systemic exertion intolerance disease (SEID) “crash,” which is a really bad thing. I no longer could bend over and pull the plug out of the power strip on the floor. If I tried, I had a tendency to fall on my head. Second, my aide could do it but she only works three hours a day.

So I called my Power of Attorney (POA) and begged for his help. He said he would call Time Warner. I have called Time Warner a bazillion times in this life and have found them, without exception, to be unhelpful—particularly when it comes to scheduling a service call.

I am a multiply-disabled person who lives alone. My telephone is my lifeline. Literally, it is a matter of life or death for me to have reliable telephone service. Time Warner doesn’t care. They will schedule me for the first-available service visit even if it is two days hence, and the Americans with Disabilities Act (ADA) and reasonable accommodation be damned. I’m bedridden and can’t even buzz my aide in to help me. That’s just fine with Time Warner.

In my considered opinion, and based on too much experience, Time Warner sucks.

So my POA calls Time Warner and gets scheduled for a service visit in two hours. Girls working a telephone bank respond differently to a man’s voice than to a woman’s voice. And there is no supervisory policy to direct them to treat woman and men the same.

So at 10:00 a.m. my POA shows up with the Time Warner technician following right behind him. I spend five minutes explaining the history of the problem, then leave for a health care appointment. When I get home, the furniture has been moved and not replaced. Thanks a bunch, Time Warner. Exactly how do you think I, in my wheelchair, am going to move the television and its table back against the wall?

Time Warner techs don’t care at all about returning things to the way they found them. They lack all courtesy, respect and empathy.

Time Warner sucks.

So I call the POA and he tells me that the tech removed the amplifier from the wall. He did that because, he said, the amplifier is usually the first thing to go wrong.

Oh. Well. Not exactly my father’s way of identifying and repairing the problem, but what the hell, as long as its fixed.

Three hours later, I pick up the phone and discover it’s not working again. Instead of getting a dial tone, what I get is a visual message that says “searching . . . out of range.” After the 20 seconds of dead air, the phone sooner or later quits working entirely and gives me this message. The tech guy who came in the morning did not do anything to fix the problem.

I have three choices: call my POA, call Time Warner—whoops, my phone isn’t working. I can’t call anyone. Do I not have a cell phone? Yes, I have the government-issued cell phone that is virtually unusable: the buttons are so small that I have to dial about three times before I can get the number.

So I opt for the third choice: take a nap. When dealing with Time Warner, it always is best to take a nap first. It reduces the amount of swearing when trying to work with their simpering young girls in Customer Service. So I take a nap then pull out the offensive cell phone and call Time Warner. They have the records of all the service calls, and probably some notes about how much I hate them.

We establish that my phone—supposedly fixed in the morning—is not working in the afternoon. She schedules me for another service call between 8:00 and 9:00 the next morning.

Fifteen minutes later, Dispatch calls to say they’ve got a cancellation between 5:00 and 6:00 that afternoon—should the come? Yes, please, sure, okay, thank you, do that.

It is after 5:30 when two Time Warner techs show up. Discussion reveals that the tech to which the call was assigned had checked the record of what had been done in the morning. A new modem had not been installed and the tech did not have a new one on his truck so he called around and found another tech who had one on board and the second tech met up with the first tech to provide the new modem, should it be needed. (To be continued)

Posted in disability, HUD-subsidized housing, Poverty, Powerlessness, Values | Tagged , , , , , , , | Leave a comment

The $5.2 Million Man: When Is It Time To Die?

Five-point-two million dollars were spent to keep one 69-year-old retired prison guard alive in the Duke University Hospital ICU for 34 days; he was then discharged to death. His wife said, “I was just hoping it would save my husband’s life.” Who was thinking about the money? A bunch of doctors and administrators. They were keeping track of the money. They had a meeting about it—and didn’t put a cap on the spending.

When my roommate was preparing to marry a man who practiced medicine thirty years ago, she told me, with a great deal of discomfort, that her husband could expect to earn more than a million dollars in his productive years. She had entered a convent upon graduation from high school. Her expectations for her life were baseline poverty; she didn’t feel good about all this money. Her husband was a Quaker; he was not driven by money, so the question was what to do? How to responsibly steward the money he was going to earn?

Now, the expectation of a physician is quite clearly that he will earn substantially more than a million dollars, and a gathering of these more-than-a-million-dollars people made the decision that it was okay to spend $5.2 million dollars on one man. What if the decisions were being made on a pay-as-you-go basis? Take away Medicaid/Medicare, private insurance and teaching hospital money, and look at this situation.

We’re talking about $153,000 per day. On the third day in the ICU, somebody comes to the guy’s wife and says, “Tomorrow you have to move into an apartment; your house has to be sold.” The wife gets upset, cries, and says, “Okay.” The kids look grim and talk to each other. They say, “This isn’t right. Mom and Dad worked their whole lives to pay for that house. They meant to have it as long as they live.”

“Yeah, but it’s just a house. Mom would rather live in an apartment with Dad than a house without him.”

“I know—but what if she ends up in apartment without him?”

A week later, somebody comes to the guy’s kids and says, “Now we need your houses. And the funds for your kids’ college education.”

The kids look at each other and say, “Uh, no. Dad wouldn’t want us to do that. He and Mom worked and saved to get us through college. It really mattered to him that we go to college. He’d be sick if he knew we were giving up our kid’s future just to—maybe—give him a couple more years. You remember when his mother died? He just kept saying, ‘She had a good life; she had a good life.’ Well, Dad’s had a good life. It’s time we let him go.”

That is the nature of human reality. We weigh and balance our assets and liabilities. Income and outgo are budgeted and balanced. We, as individuals, make choices about what is valuable but we, as a society, have now divorced our income from our outgo: the balance has been destroyed. It is not about one man’s life versus his children’s houses and grandchildren’s education; it is about one man’s life versus the houses and education of strangers. But the $5.2 million man was quoted as having “told his doctors to spend the money on someone younger.”

Doctors and administrators who do not live in the real world are making the decisions. They live in enclaves of wealth. They live in three-bathroom houses, get new cars every year, and send their kids to private schools. Discretionary income is about a ski vacation in Aspen versus taking the Concorde to Paris. This is not the real world.

In the real world, according to the federal census, a family of four has an income of $60,000. How many people do you know who have a $60,000-a-year income? Who takes home a paycheck of a thousand dollars a week? Not the woman in the ICU who changes the oxygen tubing on the $5.2 million man. Not the guy who moves the linen cart or the woman who draws blood or the man who pushes the mop—and they are the people who should be participating in making the life or death decisions about how much is spent on one person’s care.

Duke University Hospital’s pharmacists “consulted colleagues . . . and scoured medical studies . . . ‘We found nothing that we could look to and say . . . here are the guidelines.’” Look to the real world. Don’t look at the medical studies: go sit in the cafeteria and listen to the workers who are talking about the cost of milk, sneakers and car mufflers.

We are a society, a single body. If one of the parts suffers, the whole suffers. It is time to put a cap on spending. Insurance, according to my friend, is like the lottery, only backwards. If you win (lose) then you win (lose) big, and nobody else wins/loses at all. A million taxpayers pay five dollars a year to keep one man alive. You pay for your insurance but don’t use it, so it’s all there to spend on somebody else—but let’s play Republican and return the money to the people paying it. Let’s let the individuals decide how they’ll spend their money. Let’s let individuals who are representative of the masses participate in making the decisions.

Let’s just look at the ICU and reconsider how money could be spent. Let’s do a survey of the outcome of the money that’s been spent. For every $100,000 bill from the ICU, follow up for five years at one-year intervals. Ask, “Where are they now?” The woman on whom we spent $250,000—is she at home in her kitchen baking cookies for somebody? Is she in elder care, reading to somebody’s grandchildren? Is she in a vegetative state in a nursing home? Is she in a cemetery? What about the man who got half a million dollars worth of care? Is he back teaching? Mowing the lawn? Worshipping God?

The woman upon whom society spent $86,751 in the ICU in 1999 is now writing you this message.

Put a cap on ICU spending. If somebody is so sick that it costs half a million dollars to keep them alive in the ICU, do they ever again have a good life? Do their grandchildren? In the real world, you cannot divorce the quality of one person’s life from the quality of other people’s lives. It is not about judging the quality of one person’s life—for who can do that? It is about judging the quality of one society’s life—or one world’s. Five-point-two million dollars for one American man, and how much for a hundred El Salvadorian children? The women of India, the miners in Africa, the sweatshop workers in Bolivia? You are a citizen of the world. Should your father live while a child in Yugoslavia dies? Think about it.

Age counts. We need the old people to be wise for us, but we also need the children. Besides, do we, as a society, listen to our old people? We put them in government subsidized warehouses where they are ignored. We neither seek nor reap benefits from the old people whom we save in the ICU. Old people die. The age of the person in the ICU should be factored into the decision about how much to spend to keep the person alive. Is this person, who is being treated so expensively, supposed to be dead? Does God have a plan for us? Is there a God? We should be asking the questions. Every important decision we make in our lives is determined by what we believe about death. If you are a doctor and believe death should be prevented at all cost then the cost will be very high. If you are a farmer and believe that death is a natural and inevitable event, the financial cost will be low.

The question is not “Should we let this person die?” because, ultimately, we have no control over whether the person will die. The question is “Should we let this person die now?”

Posted in American medical industry, Death, drugs, Medicaid, Medical care, Medicare, physician, Poverty, Values | Tagged , , , , , , , , , , , , , , , | Leave a comment

Wallenda on the Wire

Originally posted on Anne C Woodlen: Notes in Passing:

Karl Wallenda created his crowning achievement — the seven-person chair pyramid.  Four men stood on a wire 35 feet in the air [without a net], two pairs yoked together by shoulder bars.  On top of them on the second level stood two more men, again yoked together with a shoulder bar.  At the pinnacle of this pyramid was a woman sitting and then standing on a chair!

  . . . On January 30, 1962, while performing at the State Fair Coliseum in Detroit, the front man on the wire faltered and the pyramid collapsed.  Three men fell to the ground, the rear anchorman alone remained standing on the wire.  Karl and his brother Herman fell to the wire from the second level.  The girl at the top level landed on Karl and he miraculously held her until a makeshift net could be held beneath her.  Two of the three…

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Why Not Sex on the Beach?

Originally posted on Anne C Woodlen: Notes in Passing:

I was in a restaurant, waiting for my colleagues to arrive for a business meeting, when the bartender asked me if I’d like a drink.  Yes, I would, but I hadn’t had a mixed drink in twenty-five years.

I’ll be sixty this year.  Wine was my drink but now it makes me sick, so I didn’t know what to order.  The bartender suggested a drink that combined orange juice, cranberry juice, peach schnapps and vodka.  I discovered that, indeed, I did like that.

I liked it so much that I bought bottles of vodka and peach schnapps (I already had the orange and cranberry juices).  The last time I bought a bottle of liquor was in 1972 for my friend’s birthday party.  Buying liquor again was a big deal, so I told my mother about it.

My mother is 88 and she drinks Mudslides.  When she was 78, she accompanied…

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