Search Terms


Sometimes it is fun to check the last 30 days of search terms used on this blog. Today’s round-up starts with—

Can you wear dentures with BiPAP Dentures should be worn during the day and left out during the night. BiPAP (breathing) machines should be used whenever you sleep. Nothing needs to be changed. Yes, you can wear dentures with a BiPAP machine during the day; no, you don’t need to wear dentures with a BiPAP at night. Although my dentist sometimes wonders if the BiPAP mask is altering the shape of my mouth, but I can’t separate the mask from the whole clunking machine to take it in to show him. I don’t think it’s applying pressure anywhere that matters.

Are whites on Medicaid
About 12% of Americans are black, so in raw numbers a heck of a lot more whites than blacks are on Medicaid. Medicaid is for poor people, regardless of color. There are more poor whites than poor blacks.

Will Medicaid pay for a dating for people with celiac
This question makes no sense at all. Medicaid pays for health care for poor people. Celiac disease is a medical condition in which any food containing the gluten protein—wheat, rye, oats, barley, etc.—cannot be digested in the gut. The only treatment for celiac disease is to not eat any food containing gluten. The phrase “for a dating” makes no sense. Neither Medicaid nor Food Stamps make any special provisions for people with celiac disease however, I think Food Stamps should. You can actually die from untreated celiac disease, and the kinds of things that have to be substituted for wheat and other gluten-containing foods are substantially more expensive than wheat bread, etc. [And for the aide who said, “Oh, this isn’t wheat bread, this is regular bread”—what do you think “regular” bread is made from? Wheat!] Gluten-free substitutes for poor people with celiac disease should be subsidized; they aren’t.

Antidepressants and pheromones Antidepressants are pharmaceuticals; pheromones are hormones that, in the adult male and adult female, send and receive messages of sexual availability and attractibility. There is preliminary evidence that pharmaceuticals of any type, not just antidepressants, shut down pheromone production. Just the same as the cat on the back fence, human beings rely on olfactory sensations to be attracted to one another. Without pheromones, we are not attracted. It is not that he isn’t attracted to you because you are fat; it may be that he is not attracted to you because you are taking antidepressants. Two years after I started taking antidepressants, men stopped dating me. Twenty-four years later, after I stopped taking antidepressants, I became sexually attractive and active again. There is hope.

Medicaid white women The largest group of people receiving support from the Onondaga County Dept. of Social Services are single white women with minor children.

john holcomb syracuse n.y. What I heard was that one of the secretaries from the District Attorney’s Office got drunk. She was young, sweet and demure—her typical attire was a gray skirt, pink sweater and string of pearls. In her drunkenness, she accepted a ride home from District Attorney Jon Holcombe. The 1976 clambake was held in the county adjacent to Onondaga. Holcombe raped her once in his car in Madison County and again in Onondaga County. She resigned from her job the next morning and refused to file a rape complaint. She was well-liked by the D.A.’s staff and they were protective of her. That’s the story I heard from sources inside the D.A.’s Office.
What was reported in the newspaper was that Holcombe resigned from office after pleading guilty to one count of misdemeanor driving while intoxicated. The plea was accepted in settlement of an indictment that included two counts of misdemeanor sexual abuse. By pleading to a misdemeanor, Holcombe kept his license to practice law.

Can I live on $821.a month Sure, lots of us do it all the time. $821 is about the minimum for Social Security. You will not be able to maintain a car, nor will you be able to afford entertainment but there are free concerts and lectures. Cable television and the Internet will be very iffy. On $821 a month, you will have to live in HUD subsidized housing where they figure your rent by taking all your income, subtracting out-of-pocket medical expenses and dividing by three. My rent is $104 a month; the apartment is 540 square feet. You will get about $86 a month in Food Stamps, and all the Medicaid Clinics you want to wait in line for.

People with Asperger’s are surrounded by assholes Not true. People with Asperger’s Syndrome often behave like assholes; it is sometimes hard to tell the difference.

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Medicaid Secondary, Medicare Primary


My name is Anne C Woodlen. I am 68 years old and reside at McCarthy Manor, 501 S. Crouse Ave., Syracuse, N.Y. 13210.

In early June I developed sciatica in my right hip and was ambulanced to SUNY Upstate/Community General Hospital ER for pain management and then for repeatedly falling during the middle of the night while trying to get to the bathroom to empty my catheter.

Finally, I was admitted to Community General Hospital’s Observation Unit for five days, after which I was transferred to Sunnyside Care Center for rehab. Sunnyside, located in East Syracuse, was substandard and did an unsafe discharge.
• They did not have enough supplies, e.g., when a washcloth was dropped on the floor, it was replaced with a towel because there were no more washcloths. Instead of the typical bedside water pitchers, they used hard-plastic water glasses. When the nurse took my glass to re-fill it, she did not bring it back. When another nurse followed up, she brought me a 4 oz. paper cup, saying there were no more glasses. I have nephrogenic diabetes insipidus and have to drink about a gallon and a half a day.
• Although staff in a nursing home, they did not know how to drain a catheter. No fewer than three staff members flooded the floor in the process of trying to drain my cath bag.
• Staff were not properly trained to take vital signs. A young woman came in to check my vital signs. I asked her where the blood pressure cuff was. She replied, “I don’t know; I’ve never done this before.” She left and did not return. On another occasion, a young male aide told me that my blood pressure was 90. “Ninety what?” I asked. We went around on that several times, with him repeatedly saying just “90.” When I turned the monitor around so I could read it myself, it was 160/90.

The social worker (Melissa?) came in and announced that I was being discharged on Friday. I never agreed to being discharged. I knew that I could not go home safely (I am alone 21 hours a day and virtually bed-ridden) but also I could not stay at Sunnyside with all its substandard care. I didn’t know what to do. I repeatedly tried to call the director but none of the phone numbers I tried got me connected to his office.

On Friday morning, July 3, the nursing supervisor (Natasha?) came to my room with ten prescriptions and a hand-written discharge plan. I lived on Meals on Wheels, which was closed for the three-day holiday weekend. When I asked the nursing supervisor what I was supposed to eat, she said my aide could cook for me.
• My aide couldn’t cook.
• I had been out of the apartment for two weeks so there was nothing fresh and eatable in the refrigerator.
• Because of ill health, I hadn’t been able to go grocery shopping in a month. There was nothing to eat in the apartment.

The ten prescriptions included OT, PT, a walker and a commode. I have been using a power wheelchair for ten years. When I asked how I was supposed to get those prescriptions filled, she said “Your usual way.” I don’t have a “usual way”; I don’t take drugs. “Then your aide,” the supervisor said. My aide doesn’t drive; she takes the bus, and you can’t shop for large cumbersome appliances by bus.

The supervisor got mad, grabbed the prescriptions and discharge notes and stormed out of the room, not to be seen again. This was the same nursing supervisor who, on the first day I was at Sunnyside, demanded to know why I could not shower myself. I said “Because I have S.E.I.D.—do you know what that is?”

Natasha (?) said “yes.” At a later time, she could not answer any questions about symptoms or treatment of S.E.I.D., or where she had learned about it. It is a rare disease that most physicians do not know about. Natasha was lying.

She went on to decide that she would post two physical therapists and one nursing staff member—fully clothed—in the doorway of the shower and have them watch me get naked and try to shower myself. Natasha’s plan was not to do a medically necessary evaluation, but to publically humiliate me. The embarrassment did not take place, apparently because the physical therapists would not cooperate.

My discharge from Sunnyside was unsafe. I had no way to get the things I needed to be at home safely. One day I called Sunnyside four times to talk to Vanessa, my physical therapist, and try to find out where to get an occupational therapist. The phone at the facility was not answered any of the four times.

At home alone, except for an aide from 8:00 a.m. to 11:00 a.m., I got progressively worse. Without a walker, I was repeatedly falling during the night and having to call the ambulance to pick me up. The last day, I didn’t even have enough strength to get out of the recliner. I called an ambulance and went back to SUNY Upstate/Community General.

After a time in the ER, I was admitted to Observation again, and this time was seen by a neurologist who ordered an MRI. I was admitted to regular inpatient with a diagnosis of uncontrolled diabetes and weakness of the legs. The neurologist was of the opinion that that was the cause of my problems, not the S.E.I.D. (systemic exertion intolerance disease) nevertheless, she got me scheduled with a neuroimmunologist at Upstate Medical Center in September.

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Tonight on Onondaga Hill


Greetings. I come to you from high atop Onondaga Hill where I am in the Observation Unit of Upstate-Community General Hospital (again) and can see all of Lake Onondaga and a good bit of the North Country.

And now I am mad as hell. Because of my illnesses, I am best cared for if I am presented with supper at 5:00 p.m. This afternoon I was ambulanced to the ER at 1:45 p.m. Trying to be pleasant, win friends and influence people, I waited patiently for supper until 6:15 p.m. then rang for the nurse and inquired about feeding time. She said it would be at 7:00 p.m. I did not believe her. I have 68 years of life experience, including a total of about four years spent in hospitals, and I know that the hospital administration wants all the kitchen staff to be clocked out before 7:00 p.m.

Well, to make a long story short, I was transferred to Observation at 7:00 p.m. and when I asked for supper then I was told that it had been served at 5:00 p.m. Lying to the patient is a really mean thing to do.

Anyway, the Observation Unit staff is trying to get me (a) Respiratory, to set up my auto BiPAP, which they will have never seen before and I will have to talk them through it, just as I could talk anyone through it, except that nursing staff’s refuse to learn; (b) a hot meal and not my third turkey sandwich of the day; and (c) the social worker to turn on my telephone and television, which I cannot afford to at a rate of $10/day.

Anyway, here’s the important thing: I was interviewed by a nice ER doctor who had never heard of systemic exertion intolerance disease, or it’s last-year name, myalgic encephalomyelitis, or its previous name, chronic fatigue immune dysfunction, or its other previous name, chronic fatigue syndrome, or its original name, chronic Epstein Barr, or, as the good doctor said, “They have no idea what it is.”

Right. Exactly. Precisely. You got it.

So the good doctor decided to order blood work and see if there was something he could legitimately[under Medicare] admit me for, with the nurse nudging him to notice my indwelling catheter. That’s always a good source for bacteria. Then he went his way and I lay there and thought about it.

And what I thought about is how much I have been abused in nursing homes and hospitals by the nursing staff because the doctors haven’t told them the truth about what is wrong with me because the doctors don’t know. And I decide to change the game.

I ask to see the good doctor and when I do, I explain about SEID/ME/CFIDS/CFS being an autoimmune disease that affects the nervous system and the immune system. There isn’t anything that I’ve got wrong with me that we couldn’t effectively treat if it weren’t for the SEID. Turn around and face the SEID and deal with it.

Upstate University Hospital is supposed to be this great teaching and research hospital, I say, so let’s deal with it. The good doctor laughs, tee-hee, ha-ha, and says, “You mean the downtown campus of Upstate is all that great stuff. The Community General Hospital campus is still the same old little community hospital that it was before Upstate bought us.”

Oh. Oh dear. I didn’t know that. The two campuses are being advertised to the citizens as one-size-fits-all. I explain to the good doctor the stupid, abusive, multiple experiences I’ve had in trying to get to Upstate’s single neuroimmunologist, who, he says, probably wouldn’t be on call even if he called him. I say, “But you could at least try, couldn’t you?”

He doesn’t say he could, but he comes back later and tells me that the Upstate neuroimmunologist is off, and that he talked to the Community General neurologist, and I will be admitted to Observation overnight and the neurologist will see me in the morning.

How about that?

There’s a whole lot more to tell, but I’ve got to go eat my third sandwich, this time PB&J, because of that lying bitch nurse in the ER, may she be stuck on nights for a month and have to eat from vending machines.

P.S. This whole story started this morning around 6:00 a.m. when I fell at home. It was my second fall in two days. And then later this morning I was not able to get out of my recliner. My aide got me up and back to bed then left me alone at 11:00 for the rest of the day. This simply could not go on; something had to be done. All who were consulted agreed that going back to Upstate-Community was the thing to do. Except me. I lay there and wondered how painful it would be and how long it would take to die if I just stayed in bed without food or water and with a catheter and let nature take its course.

Tonight, at least, I will be safe. I will stay in bed, the nursing staff will bring me water and drain the catheter, and tomorrow the social worker will turn on the telephone and television.

And I finally will have the opportunity to present my battered nervous system to a neurologist. Please, God, bless him with an open mind.

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Writing: Journal or Blog?


Thanks to Maie Liiv for forwarding.

Science Shows Something Surprising About People Who Love to Write
By Rachel Grate September 15, 2014

The benefits of writing go far beyond building up your vocabulary.

No matter the quality of your prose, the act of writing itself leads to strong physical and mental health benefits, like long-term improvements in mood, stress levels and depressive symptoms. In a 2005 study on the emotional and physical health benefits of expressive writing, researchers found that just 15 to 20 minutes of writing three to five times over the course of the four-month study was enough to make a difference.

By writing about traumatic, stressful or emotional events, participants were significantly more likely to have fewer illnesses and be less affected by trauma. Participants ultimately spent less time in the hospital, enjoyed lower blood pressure and had better liver functionality than their counterparts.

It turns out writing can make physical wounds heal faster as well. In 2013, New Zealand researchers monitored the recovery of wounds from medically necessary biopsies on 49 healthy adults. The adults wrote about their thoughts and feelings for just 20 minutes, three days in a row, two weeks before the biopsy. Eleven days later, 76% of the group that wrote had fully healed. Fifty-eight percent of the control group had not recovered. The study concluded that writing about distressing events helped participants make sense of the events and reduce distress.

Even those who suffer from specific diseases can improve their health through writing. Studies have shown that people with asthma who write have fewer attacks than those who don’t; AIDS patients who write have higher T-cell counts. Cancer patients who write have more optimistic perspectives and improved quality of life.

So what is it about writing that makes it so great for you?

James W. Pennebaker has been conducting research on writing to heal for years at the University of Texas at Austin. “When people are given the opportunity to write about emotional upheavals, they often experience improved health,” Pennebaker writes. “They go to the doctor less. They have changes in immune function.”

Why? Pennebaker believes this act of expressive writing allows people to take a step back and evaluate their lives. Instead of obsessing unhealthily over an event, they can focus on moving forward. By doing so, stress levels go down and health correspondingly goes up.

You don’t have to be a serious novelist or constantly reflecting on your life’s most traumatic moments to get these great benefits. Even blogging or journaling is enough to see results. One study found that blogging might trigger dopamine release, similar to the effect from running or listening to music.

From long-term health improvements to short-term benefits like sleeping better, it’s official: Writers are doing something right.

http://mic.com/articles/98348/science-shows-writers-have-a-serious-advantage-over-the-rest-of-us

For eons, people have been writing journals. I’ve been doing it for 57 years. The above-printed article starts out talking about journals but ends up talking about blogs. Big difference. A journal is a private collection of writings; a blog is a message to the entire world. When should you write privately for healing and when should you publish your musings?

I believe that most of the time you should confine your comments about your health to (a) your physician, (b) your immediate family, and (c) your three best friends. The state of your body is the most selfish thing there is and dwelling on it is unpleasant and useless for others.

For the past 14 years I have been forced by finances and the federal government to live with old people who are mostly sick people. Currently, I live in a building with 176 apartments, and 91 percent of the tenants are disabled. Everybody is sick. That sucks. There are all kinds of studies showing that people who focus on illness become more ill. Surround yourself with sickness and you become sicker.

I won’t do it. My neighbors spend hours talking about what’s wrong with them. Not me. If you want to dwell on your diseases then don’t expect me to sit with you. I’m so outta here. I will not talk or write about my illnesses. What? You say, “That’s all you do!” There is a catch phrase, which is “What did you learn?”

I write about depression, because we’re still trying to figure out how to cure it. I write about chronic fatigue, because we don’t know what it is. I write about hospitals and rehabs and nursing homes because we are spending 27 zillion dollars of taxpayers’ money on things that don’t work. I hope, God willing, that I am writing some things that provoke thought on how to get healthy, as opposed to writing about every ache, pain, and physical dysfunction, and reveling in it.

So here’s the point: writing about your health may help you be healthier but who would read it? How many complete strangers should have your illnesses inflicted upon them? If you have something for others to learn, then go for the blog.

Other than that, go to the nearest drugstore, buy a paper notebook and keep a journal. You’ll feel just as good and you won’t inflict your pain on the rest of us.

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Medicaid Services: Too Little, Too Late


We spent two or three months trying to get a care manager from Health Homes, “we” being me and Dr. Katherine (Kate) Lewis, a psychologist with Psychological Health Care. He—Leonardo Sanchez—finally showed up at Sunnyside Care Center last Thursday morning. A case manager at last!

He left my room to find out how I was supposed to get the walker with which I was to be discharged, and swearing that he would call me back that afternoon. We both understood that his office was closed on Friday for Independence Day and that he would talk to Kate and then meet with Kate and me at my apartment on Monday. Leo did not call me back.

On Friday I was discharged with no food and a prescription for a walker that I had no way to fill. My pain level was down to two Tylenol a day. I wheeled to a Chinese place and got Egg Foo Yung.

On Saturday, at home, I discovered on MyChart that somebody had made an appointment with Dr. Nanavati for me without telling me. It was for 8:00 a.m. Monday. Morning is my absolutely worst time. My aide, Robin-the-magnificent, doesn’t get to work until 8:00 a.m. I was terribly sick and absolutely had to see the doctor. Impossible. Impossible. Robin and I went to the university shopping area and got juice.

I had lost eight pounds in a week. I was weak and wobbly and frequently lost my balance. I slept or not, ate what I could carry without a walker or tray. Moved from bed to recliner and back, terrified with each step, hit my head and wept. I stank from sweat, a catheter and no perianal care, thrush and no dental care. On Sunday, Robin and I got me some kind of shower, at high risk for falling.

On Monday, Robin got up around 5:00 a.m. and took the bus to my place. Arrived around 7:00 a.m. Fed me breakfast and got me dressed. I was at Dr. Nanavati’s by 8:00 a.m., sobbing in pain from a muscle twitching in my big toe. The receptionist asked if I was all right. I said I was in pain. She said “oh” and left me sitting in the waiting room.

My vital signs were all normal. Dr. Nanavati hugged me and I wept. He adjusted the wheelchair so I could lay back. He said that first we had to deal with the pain, which—consequent to having to take care of myself—was now up to two narcotics every four hours. He talked about an orthopedist, increased services, talking to Dr. Ghaly, looking—not in medical services but in the community—for help. Kate and Leo were meeting with me at noon, and he wanted to talk to them.

I went home. Robin put me back to bed. I took two more painkillers, and slept.

Kate arrived. Meals on Wheels had been left outside the door. Leo did not show up. We spent half an hour trying to find him. He had said he would be here at 12:15 p.m. He wasn’t. Then he said he wasn’t my case manager; he was an intake worker. Then he said he would come on Friday to meet with Kate.

Kate knew I couldn’t possibly last that long. She said she would call Dr. Nanavati, and I knew she would do it. Whether, together, they can save me I do not know.

I can’t even turn over in bed. My catheter bag is full and I cannot empty it.

I have done everything I was told to do. I have complied with the system.

It will be the death of me. This is what your taxes pay for: too little, too late. You pay for a boondoggle that does not provide essential services. When are you going to stop paying for Medicaid when it doesn’t work?

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Complaint against Sunnyside Care Center


1. I cannot turn over in bed. At SCC I could power my bed down flat, grab the side-rails above my head, and pull myself up. At home, my hospital bed has no side-rails and I am too weak to turn over without assistance. As I repeatedly told SCC, I have no assistance except a home health aide and I am alone 21 hours a day. I have no family.
2. I was admitted to SCC on Thursday 6/25. I lost eight pounds in nine days at SCC.
3. When Natasha, a tall, African-American nursing supervisor, was discharging me on Friday (7/3), I asked her how I was supposed to eat. I subscribe to Meals on Wheels Monday through Friday. I would go Friday, Saturday and Sunday without food. Natasha said my aide would cook for me. She doesn’t know how to cook, and I had been in the hospital and at SCC for two weeks. My landlady had cleaned out the refrigerator, and I hadn’t been able to go grocery shopping for two or three weeks prior to that. SCC did not know or care that I would be three days without food on 4th of July weekend.
4. I was discharged home with ten prescriptions and no way to fill them:
a. A walker, a commode
b. Four scrips for insulin and needles
c. A scrip for treatment of thrush
d. A scrip for a pain killer
e. Benadryl
f. ?
5. The nurse practitioner had interrupted my physical therapy session to tell me that she’d written the prescriptions for my discharge. (A) I did not want to be discharged home; (b) my apartment was too small for a walker and a commode; (c) I had stopped taking the insulin; (d) I had never taken Benadryl. The nurse practitioner had never met me or talked to me.
6. After the admitting interview, Dr. Morrow, the only physician on staff, never spoke to me. I reacted to the insulin, and asked to speak to her. She didn’t come. The next day, an aide said, “Oh, you want to get on the book?” Yes, whatever. Dr. Morrow did not come that day either. The next day, nursing supervisor Natasha announced that Dr. Morrow had seen me the previous day. She hadn’t. That day the nursing practitioner stuck her face in mine and said she’d written the discharge prescriptions. I still was not saying yes to being discharged. On the last Thursday, Dr. Morrow came in and said she couldn’t talk to me; she had to go to a funeral. She went.
7. I asked Natasha how I was supposed to get the prescriptions filled. She said, “Your usual way.” I had no usual way. Prior to Sunnyside, I did not take drugs or use a walker or commode. I have been using a power wheelchair for about ten years; my aide does not have a car. SCC discharged me with ten prescriptions and no way to fill them.
8. When I got angry, Natasha grabbed the prescriptions and the discharge papers and left the room with my aide Ty in tow.
9. Ty, a very tall, 23-year-old African-American aide, is incompetent.
a. He took my vital signs. I asked him what my blood pressure was and he said 90. I asked what the other number was. He said 90. We went around and around on this until I turned the wrist cuff and showed him that “sys” was 160 and “dia” was 90. Ty did not know how to read a blood pressure.
b. He came into my room, turned the water on full blast to get it warm, and left the room. After 20 minutes another aide came in and turned off the water.
c. Every time Ty said he would be “back in a minute” then he would not return for half an hour.
10. Another aide also could not take my blood pressure. She came into the room with some kind of unit to check my vital signs. I asked her where the blood pressure cuff was and she said she didn’t know—she had never before checked vital signs. She left the room and did not return.
11. SCC used wrist cuffs to check blood pressure, not a manual cuff or a machine. It is my understanding that the wrist cuff is the most unreliable—and cheapest. To check temperature, they use some kind of thing that they hold against your temple.
12. Supplies always were in short supply. One day an aide dropped a washcloth on the floor. She put it in the dirty linen bag, left to get another one, and came back with a towel instead. There were no more washcloths.
13. Instead of using the standard pink pitchers, SCC uses 10 oz. hard plastic glasses with black lids that have a hole for a straw. A nurse took my glass for a refill. She did not come back with it. Later an aide went to get me another glass and came back to report that there were no more.
14. Antoinette is an evening med nurse who has been at SCC for 30 years.
a. She was the one who took away my glass and did not return it. (I have a rare kidney disease and put out four times as much urine as normal, necessitating four times the normal input.) When I saw her later, I asked her about it. She immediately went out to where she’d left the glass and brought it back.

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“Exploding”


After five days on Upstate/Community General Observation Unit and eight days at Sunnyside Care Center rehab, what are my conclusions?

Not much.

1. I am tired, too tired to know or care.
2. Care of the sick is given over to the least intelligent people.
3. The least intelligent people are the most rigid, inflexible people who gather in cliques of malice.
4. The poorest patients are given the worst treatment.
a. The doctor stopped by literally for a minute today because she was going to a funeral.
b. The nurse practitioner came in yesterday to tell me that she’d written prescriptions for my discharge without asking how I felt about being discharged, then left without talking to me: five minutes.
c. The nursing supervisor came in yesterday and told me that the doctor had seen me the day before: she had not.
d. The med nurse, the day before, had “put my name in the book,” requesting to see the doctor.
e. I once knew a physician who said that if I was sick enough to be in the hospital then I was sick enough to be seen every day.
5. Tomorrow I will be going home at 10:30 a.m., where my aide will meet me for three hours. Thereafter, I will be alone for 21 hours. I have no idea how I will get lunch or supper.
6. There are hundreds of thousands of people like me: women, living alone, unable to fend for themselves, and too depressed to care.
7. A neighbor called me last week to tell me that another one of our neighbors “exploded.” She died with nobody knowing or caring, and at some point—about three days into the decomposition process—she “exploded.” That’s the third person this year in our apartment building.
8. The Lord has called us to take care of each other. We’re not doing it.

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