DOOMED AGAIN? – Marilyn Armstrong

We are doomed. If the climate doesn’t get us, some newly arisen germ will get us. My son is sure the oncoming Coronavirus is a reiteration of Stephen King’s “The Stand.” To be fair, I read “The Stand” such a long time ago, I don’t remember much about it. I have his updated (edited material restored) version in my audiobook library, but it’s a 46-hour listen. The book was long, but now it’s a couple of hundred pages longer.

I’m not sure I have the strength to reread it, but I feel I should. Because, you know, it’s Stephen King and he’s a local guy.

It was October when we got our super flu shots. These are hyped up uber-potent shots they give to older folks — like us — because we are more likely to get sick than younger people. Sicker, because we also have asthma, high blood pressure, heart problems,  chronic sinus problems. Stomach problems. IBS. Fibromyalgia. MS. Cancer. And, of course, arthritis because you can’t avoid it. It comes with age and being mammalian.

How are your allergies? Allergies are just like being sick, but you never recover.

In fact, I don’t know why we don’t just die and give the world a break. Sheesh.

Discovering that in addition to the usual distributors of disease — other people, especially very young people, we can worry about everything we touch including supermarket carts and ATMs.

As if the handles on the shopping cart and whatever my granddaughter is carrying (she doesn’t get sick — at 23 you carry germs, but you’re fine) isn’t bad enough, now I have to stress over ATM machines? Not that I actually use them. I won’t make a deposit without going to a living person in the bank. I want a paper receipt. Signed and dated.


We are doomed. Something will get us.

How about that creeping, unexplained virus eating China or maybe the super-flu which the vaccine can’t control? Or the climate will continue changing and it will rain until the rivers overflow. We will all drown in boiling water because it has gotten too hot to live in what was humorously called “the temperate zone.”

We don’t go out much. When we do, one of us gets sick, followed the other one of us. There’s an inevitability to it, like the slow cars that pull out in front of us while we are traveling. I’m sure these cars are told when to appear by drones from the Super-Slow Drivers’ Department.

Meanwhile, somewhere in the air, there’s a germ-laden drone.


“Look! It’s the Armstrongs! Prepare to disperse germs!”


When we went for our flu shots, they asked if we thought either of us might be sick. At our age, that’s not an easy question to answer. Maybe we are fine. Or not. Is my stomach the usual “upset” or is it a bug? Am I exhausted from last week’s major house cleaning or from trying to find (unsuccessfully) a handicapped space in Worcester the other night? Does this mean I’m coming down with something? If so, what?

Am I worn out because the dogs are more passionate about squeaky balls than I have ever been about anything? Don’t you wish you could get that enthusiastic about a big green tennis ball that squeaks? Don’t you wish you could bite something hard enough to make it squeak?

ONE THING I DID NOT WANT TO BE – Rich Paschall

Old, by Rich Paschall

When you think of all the things you want to be when you grow up, “old” probably is not on the list.  You may think about being a doctor or nurse.  You may consider lawyer or politician.  Fireman or police officer may be on your list.  In fact, in your elementary school days you may have changed your mind many times. It is OK to dream about the future and fantasize about what you should do some day.

If superhero is on your list, you may have to give that one up rather quickly, unless you are Robert Downey, Jr.  He is still playing Iron Man past the ripe old age of 50.  I guess that is a commentary on keeping yourself in good shape.  Of course, he is just play acting, like we do as kids, and he certainly has a stunt double.  Your own life does not come with a stunt double, sorry.

If we give it any thought at all while we are young, of course we want to live a long life.  Therefore, we do want to get old.  If accident or disease does not rob us of life too soon, then we will indeed get old.  It is all the things that go with it that I am not too pleased about.

Contemplating the years

Contemplating the years as the sun sets.

I did notice the changes in my grandparents as they got older.  I am certain that I threaded needles for both my grandmothers at some point in time.  I knew they could not see as well as when they were younger, but I never thought about that being me some day.  Yes, I can still thread a needle, but I probably have to hold it at just the right distance in order to do so.  In fact, I really need trifocals, but I have settled for two pair of bifocals instead.  The bottom part is the same on each, but one pair is strictly for the computer.  The top part of the glasses are set to optimize the view from where the monitor should be, a little more than arm’s distance away.

This is not fooling anyone, of course, not even myself.  People can see I switch glasses in order to see.  I should have gotten the same style glasses so it would be less obvious.  When I am on Skype, and can see myself back on the screen, I really do not like the look but I am stuck with them for a while.  At least glasses have gotten better and these are not as thick or heavy as ones I wore years ago.

72-LensCrafters-Auburn-Mall_22

As my grandfather got older, I noticed he sometimes used a cane to help him get up, or walk around.  When he was in his 80’s, he never left the house without the cane.  He just might have too much trouble walking while he was away. Sometimes when I walk past a window or mirror, I think for just a moment the reflection I see is my father or grandfather.  My stepmother once said that I should take it as a complement that people see me as my father, since he was so handsome, but I began to think they saw me as they saw him later in life.  That is, old.

When you see pictures of me, you generally will not see the cane.  I set it down for the shot.  Years ago my doctor sent me to a sports medicine guy for a foot problem of still undetermined origin.  Maybe I was playing sports in the park long after a time when I should have moved on.  Maybe I suffered some trauma that came back to get me.  Maybe it was related to some disease I contracted.  In any case, I had it operated on, which did not help.  Years later I had another operation.  That did not help either.  I had many procedures in between.  Was it just an issue of getting older?  We will never know for sure.

I have heard it said that the aches and pains we feel as we get older are not a natural part of life and we should not just accept them.  Perhaps some accept them when they could feel better, but I have never accepted them.  I have spent a good deal of time getting to know my doctor and all that goes on in his business.  Yes, I might as well interview him a little, he interviews me a lot.  Together we have looked for solutions to my various problems.

The Gabapentin for the foot nerve pain does not seem to eliminate the problem, even if it lessens it.  The Lidocaine patch may numb the pain, but I cut the patch down because a completely numb foot is not a good thing for walking and creates a dull pain, which actually is not much better than a sharp pain.

My doctor does not like my diet or my cholesterol.  He seems to cast a skeptical eye at my insistence that I watch the cholesterol rating on the food I buy.  That does not include restaurant food, however.  Or what John cooks for dinner.  Statins did not work.  They created muscle and joint pain I could not stand.  The non-statin anti-cholesterol pills are not as effective, but hold less side effects, apparently.  Other problems and medications have come and gone. Parts wear out, you know.

Recently a high school class mate of mine wrote to say he had finally gotten in to a senior center he had applied for a while ago.  He had a variety of health issues in recent years and needed to get into such a community.  I wrote back that I could not imagine that any of us would be talking Senior Center, because it seemed like just a few years ago we were in high school together.

With any luck at all, old age will catch you some day.  You will probably feel it coming.

Related: Share If You Are Old Enough To Remember (humor)
To Not Grow Old Gracefully (Sunday Night Blog)

“NO” IS SOMETIMES THE PERFECT ANSWER! – Marilyn Armstrong

Remember how, many years ago in a galaxy far, far away — you know,  during the Reagan administration — our government decided the best anti-drug program was “JUST SAY NO!” Make every person 100% responsible for whatever happens to him or her. As history tells us, this anti-drug campaign was so successful, we no longer have drug problems in this country.

So I thought we might use this same highly successful approach to other major social issues.

NO!

Like health care. As we move from an era of medical insurance to “Good luck, buddy,”  we need new coping strategies. How about “Say no to sickness!”

If you feel like crap, just say NO. Cancer or heart disease got you down? Smile! A bright smile and a positive attitude coupled with a firm take-no-prisoners attitude to germs and chronic ailments will wipe away your tears.

Let a smile be your umbrella when your arthritis is throbbing. If you can’t breathe because you don’t have an inhaler? Say NO to wheezing. Everything will be right as rain.

Gun violence is another good example of a problem that wouldn’t exist if we each had a better attitude. Alternatively, if you are a devotee of second amendment rights, try getting a bigger weapon. When bullets start to fly, just say NO! Like magic, bullets will bounce right off you.

Would I lie to you?

There is no problem too complicated that magical thinking will not make it disappear. We can fix everything with firm resolve, a positive attitude, and denial.

Speaking of climate change (we weren’t but now we are), there’s no such thing. Nothing is going on. No need to seek higher ground. Well, what about water pollution? Nonsense! Funny-colored smelly water is merely chock full of extra nutrients. Yummy!

JUST SAY NO is the ultimate, cost-effective way to deal with pretty much everything. A few television advertisements and some billboards along the highway? Bob’s your uncle, the problem vanishes.

Maybe you can add some pamphlets. If these don’t quite do the job, you’ll probably die. In which case, it becomes someone else’s problem. We all know — at least those of us who have read Douglas Adams — that someone else’s problem, is invisible. If we can’t see it, it’s not there. (Phew. I was worried for a minute.)

It’s entirely up to you. Just say no. And keep saying it.

WHEN YOU GET TOO OLD TO BE COST-EFFECTIVE – Marilyn Armstrong

DISCOVERING I’M PART OF THE EMERGING DEMOCRATIC RESISTANCE (ALSO LEFTWING, SOCIALIST, AND NO DOUBT COMMUNIST)


If you have asthma or any kind of chronic medical problem that requires continuing care and medication, that’s the message you are getting. We have had a brief interruption during which almost everyone had access to at least basic medical resources. You could go to the doctor, get some medicine. Have your cancer removed, your broken leg treated. Now … well … who knows what lies ahead.

If you’re on Medicare, that’s the message you’ve been getting for a while already. Several years. They’ve been chipping away at the benefits. Fewer dollars for medication. Fewer covered medications. Deeper deductibles for tests. The out-of-pocket costs for an MRI or CAT-scan are ridiculous. Garry hasn’t had any major medical issues, but I’ve had enough for both of us.

Yet, I turned down a cancer CAT-scan last year because I didn’t have the $450 co-pay … and I’ve had cancer twice, so it wasn’t a decision made lightly.

medicare__estelle_carol___bob_simpsonMedicare doesn’t cover eyeglasses, dentures, dental care of any kind, CATscans, MRIs, or asthma inhalers. In the 1990s, when my asthma finally got bad enough to require treatment, a daily inhaler cost (without insurance) about $75. Which wasn’t cheap, but I could manage it, especially if I didn’t use it every day (no matter what the label advised).

One day, two or three years ago, the same Advair inhaler shot up to more than $500 a month. Medicare will only pay for about $12 of that price. Although they are not paying for it, they will charge the entire price of the medication against my annual drug benefit.

Let me repeat that because you probably think it doesn’t make any sense.

It doesn’t make sense, but it’s true. If a drug costs $535 per month and Medicare contributes $12, they charge all $535 against my annual drug benefit. The amount of the benefit has been dropping each year while medication prices have soared. This makes sense only if the real goal is to kill off the older generation.

In another bizarre but real piece of anti-intuitive reasoning, if you are prescribed a medication, towards the cost of which Medicare pays not a penny, and you pay for it out-of-pocket, Medicare still charges the entire price of the prescription against your benefit. “What?” you cry. Nonsensical, but true.

It’s a lose-lose. If you don’t get any medication, you will have trouble breathing. If you do get the medication, it’ll break the bank and burn through your benefits, even though Medicare isn’t contributing anything towards the cost.

It’s absurd and true.

medicare confusion

From the government’s point of view, I am not cost-effective. I am sure my compassionate government would prefer I cast off my mortal coil. Save them a few bucks.

Never mind that over a lifetime of work, Garry and I paid enough taxes to fund a small country. Our contribution vastly exceeded any amount we will get back. Even now, we aren’t exactly free-loaders. We pay income taxes, excise taxes, and some hefty property taxes. And Medicare, while not expensive (compared to no medical care), is not free.

Ever since I turned 65, it’s been downhill.

The day I turned 65, I was dumped by MassHealth (Medicaid). I hoped I’d be protected by my disabled status. I’d been on disability for years which was why I was entitled to MassHealth.

Medical marijuanaNo problem getting around that. Social Security reclassified me, eliminating my disabled status. Poof — I’m just old and not disabled.

They switched me to standard Social Security, so I get the same monthly check but without the extra medical protection conferred by disability or the other discounts on electricity and heating oil. They also lowered the poverty guideline so we no longer qualify for any extra help on anything — not fuel, medication, electricity and are not entitled to senior housing. In short, we get nothing. Because apparently when you turn 65, your costs go down. You don’t need money when you get old. Nice.

We’ve outlived our usefulness, so how come we aren’t dead? Why do we stubbornly cling to life? If we cared about our fellow humans, we’d get out of the way.

My doctor found some free samples of asthma medication so if I’m lucky, it will keep me breathing for another 6 months. Used cautiously and only when I’m really desperate.

As of today, we have a president — if you want to dignify him with that title — dedicated to making the lives of everyone whose life is already difficult, worse. Compassion, common decency, basic fairness? What? Huh?

medicine wheel 8

Today was the first time, I realized being a Democrat is not just being part of a political party, but makes me part of “the emerging Democratic resistance.”

I have to admit, being part of an emerging Democratic resistance sounds more romantic than just being old, sick, poor and not Republican. Maybe they’ll write books about us. Sing ballads. Talk about how brave we were right up until the moment when they put us up against the wall and shot us.

PLEASE, JUST MAKE ME FEEL BETTER – Marilyn Armstrong

FOWC with Fandango — Health

I visited my favorite doctor last week. She is the only one of my original set of doctors I kept when I changed insurers. Despite her not being covered directly by my new insurance, she “gets me” in a way that only someone who has known you for a long time possibly can.

I hadn’t seen her in while — she was on vacation — so we had some catching up to do. We talked about me, her, life, getting older, and how things don’t feel like they did when we were young. Mostly, we discussed how important it is to feel better.

Anyone who has been sick for a long time knows what I mean when I say:


“I just want to feel better.”

There comes a moment in time when whatever is wrong with you has dragged on for what feels like an eternity. You can’t remember what it was like to feel good. You’ve done everything you are supposed to do yet still, you feel like crap.

Whether it’s cancer, recovering from surgery, anxiety, bipolarity, the pain of chronic illness — or any combination of the above plus all the other things I forgot to mention — there comes a day when all you want is to feel better.

You really don’t care how. Whatever it takes, whatever drugs, surgery, therapy, whatever. Please, make me feel better. I want a day without pain. Without anxiety, depression, or nausea. I want to feel normal, whatever normal is. Because I am not sure I remember “normal” anymore.

The problem is that feeling better isn’t considered a medical issue. As far as doctors are concerned, feeling better is your problem, not theirs. You can’t test for feeling better. You can’t plot it on a chart.

There is no medical value to how you feel. If you can’t put it on a chart or turn it into a statistic, it’s not real and not important.


To me, it’s the only important thing. Since feeling lousy isn’t an illness, feeling better isn’t a cure. If it isn’t a cure, the medical community isn’t all that interested.

Meanwhile, the doctor keeps telling you you’re fine. Except you don’t feel fine. You are tired, in pain, crabby, unable to sleep. Nauseated. Exasperated. Depressed. Fed up with everything.

Just three of my doctors believe feeling good is a legitimate medical goal. One is my primary care doctor, the next is my cardiologist and the final one is my shrink.

Her task is to help me feel better. “After all you’ve gone through,” she says, “that’s what I can do for you. I can help you feel more like you used to feel before all that horrible stuff happened.”

She understands. She gets it. I’m going to keep her. The hell with insurance.

SURVIVING WHEN YOU CAN’T PAY FOR DRUGS – A GUEST POST

Case Management

When you are diagnosed with an illness for which there is no cure, but long time survival is possible, you quickly learn that the most important case manager you will ever have is yourself.  You need to learn everything you can to survive — legally and, if necessary, illegally.  You tend to drop your concern for law when your life is at stake, especially when you will “First, do no harm” (Primum non nocere), the oath of doctors and others helping people survive.

Support group members will urge you to not merely educate yourself about the disease, but to get a good case manager. After you understand all your treatment options and the decisions you will have to make, your case manager can help you navigate the maze of health care bureaucracy. This is important for everyone, whether or not they have a job or insurance. Anyone can be taken advantage of by the system.

Illustration: NBC News

Early after an HIV positive diagnosis, I was laid off from the job which provided my health insurance.  The fight to start COBRA coverage was immediate.  Many states have programs to help pay for continued health insurance under COBRA (Consolidated Omnibus Budget Reconciliation Act).  There may also be other drug assistance programs because the cost of medication, even with insurance, may be out of reach for those without jobs and even those with minimal jobs.

While state help was being lined up, my well-known insurance company was deciding whether to grant continued insurance.  Their basic argument was they were headquartered in another state and therefore were following other guidelines. The case manager got experienced lawyers familiar with this sort of trick to deal with the insurance company.  They finally offered COBRA and the state came through with payments.  This was the value of a knowledgeable case manager, but the process took time.

A Re-Purpose

The interval during the battle for coverage brought other concerns.  I knew I might be able to afford the multiple drugs for a month or two, but the extreme costs would quickly wipe me out.  That is when I learned about “other” assistance.  This kind of assistance is spoken of quietly by those who are desperate, but can be trusted.  It is the kind of help that takes place all over our region, and probably across the country too.

My case manager told me he might be able to help with some drugs, but not all.  When I came for an appointment one day, he told me to wait. He went to a pharmacy and came back with some of the medication I needed.  He took a black marker and carefully crossed out a name and gave it to me. He said it was mine now and not to say anything to anyone about this.  Ever. I left and kept quiet for years.  The agency he worked at is gone now, and I don’t know what happened to the case manager.

He had gone to a pharmacy that had secretly offered help.  When a patient did not pick up their HIV drugs for over a month, they did not put the item back in stock, but held it on the side for emergencies. If the item had been covered already by insurance, and the customer did not pick it up, they felt free to hand it to another. The drug company was paid and the insurance company was none the wiser.  This tactic is illegal, but many will run the risk to save lives.

Helping One Another

Not all managers are so resourceful or willing to run such risks.  Strictly speaking, it is against the law — dispensing drugs without a license.  There are individuals in support groups who are willing to assist with drugs, when no one else can.  For a while, there was an agency here that had acted as a go between to pass drugs from one patient to another.

In support groups, some would mention how they could bring unopened bottles of HIV medicine to the agency and they would keep it for those in need. Then if a member could prove they had a prescription for a particular drug the agency had on hand, they would give a month or two of the drug to the client.  That agency no longer does this or will even admit they did it for many years.  They could be shut down just like the agency referred to above.

Drugs are collected in many ways.  If someone who has gotten a three-month supply of medication, but then the drug was changed by his doctor, he would bring the unopened bottles to the agency to lock up in secret. If someone passed away, a mate might turn in unopened items to help someone else.

The fear of being caught helping to save lives has led many away from this type of help. Patients are left to do what they can for each other via contacts in support groups — or even “on the streets.”  Those fighting the disease can not imagine throwing out drugs that can help others.  Turning in drugs to be destroyed seems a bigger crime than “dispensing drugs without a license” for those who hold a prescription for a life-saving drug.

“Healing those who seek my help”

With the loss of agencies willing to help patients get drugs, legally or illegally, some doctors are willing to fill the void. There are those who collect back unopened drugs so others who can not afford them will benefit.  A doctor knows the prescription of a patient and will generally learn in private conversation who needs help.  If the drugs have already been bought and paid for, it seems a humane thing to do. In this country, this kind of help is unfortunately necessary.

The High Cost of Drugs

HIV drugs come in several classes and a patient is likely to take one or more from each of 3 or 4 groups per day.  Few drugs have generics and even those are expensive.  The retail cost in the United States for three or four of these drugs could run 4 to 5 thousand dollars per month.  Patients receiving various assistance programs are terrified of health care “reform.”  Out of necessity, we help each other.

When I was in Germany and discovered I had miscounted a medication. Of course I was panic-stricken.  I went to a pharmacy, who sent me to a local physician who spoke English.  I told her of my plight. When she was satisfied I had demonstrated I had such a prescription (I always bring proof if I travel), she wrote a new prescription. I went back to the pharmacy, prepared to charge to my credit card an outrageous amount due to my miscalculation. I knew my insurance card would not be honored overseas. The drug was reasonably priced, about one tenth what it costs retail here.

Aside from one doctor I know of, many who would otherwise be willing to help with drugs and health care services have been driven away –or at least underground.  Americans do not have the protections other countries around the world offer. In the absence of legal support, we do what we can to help everyone — not just with advice, but with life-saving drugs denied to many because they can’t afford them.


People without insurance die.
This is not a political opinion. It is a fact. 

NOTE: Since the author isn’t available to answer questions, comments are “off.”  I can’t answer questions because I don’t have any answers, sorry.

DOOMED – Marilyn Armstrong

Weekly Word Prompt: ATM Germs


We are doomed.

Yesterday — or was it the day before? — we got our super flu shots. These are hyped up uber-potent shots they give to us older folks because we are more likely to get sick than younger people. Also, we are more likely to die from the flu because we have other issues — asthma, blood pressure, and heart problems. Sinus problems. Stomach problems. Fibromyalgia. MS. Cancer.

In fact, I don’t know why we don’t just die and give the world a break. Sheesh.

Discovering that in addition to the usual distributors of disease — other people, especially very young people — we can now worry about everything we touch including the ATM machine.

Don’t forget your flu shot …

Really? As if the handles on the shopping cart and whatever my granddaughter has on her clothing isn’t bad enough, now I have to stress over ATM machines? Not that I actually use the ATM machine. I won’t make a deposit without going to an actual person in the bank. I want a paper receipt.

Call me crazy, but once, a long time ago in a bank since absorbed by some larger bank — probably by now it’s all Bank of America — they lost a deposit I put through in an envelope that included an official deposit slip.

It got straightened out but left me with a firm belief for any deposit made by check or cash I want a written, signed piece of paper from a person.

We are doomed. No matter how hard we try, something will get us.

We don’t go out much. When we do, we usually get sick. It’s like the slow cars that pull out in front of us while we are driving. I’m sure these cars are told when to appear by drones from the super-slow drivers’ department. Meanwhile, somewhere in the air, there’s a germ-laden drone.


“Look! It’s the Armstrongs! Prepare to disperse germs!”

Mostly, Garry and I have been exhausted. All the time. For me, this typically means fibromyalgia. Garry had surgery in July and I have a feeling that this might have triggered the same thing for him. Women are more typically fibromyalgia victims, but men are not excluded.

Then again, maybe we aren’t sick at all. Maybe we just aren’t getting enough sleep. The weather has been like hot soup with interludes of rain.  Duke is shedding like a small furry hurricane. Our sinuses and eyes don’t like the ragweed and Garry is getting used to carrying around a lot of electronics inside his head.

So maybe it’s all allergies and getting even older.

When we went for our flu shots, they always ask if you think you might be sick. At our age, that’s not an easy question to answer. Maybe we are fine or as fine as we ever are. But, maybe we aren’t fine.

Am I exhausted from all the running around to doctors and hospitals or because I’m coming down with something? Am I recovering from the major house cleaning last week? Or am I worn out because our dogs are faster, friskier, and more impassioned about balls that squeak than I could ever be?

Don’t you wish you could get that enthusiastic about a big green tennis ball that squeaks? Don’t you wish you could bite something hard enough to make it squeak?

CAN I COMPETE WITH A ZING? – Marilyn Armstrong

My Brain Has Gone Off-Duty


I feel like my brain is too tired to go on.

You know how you feel when your muscles have seized up and you simply can’t walk any further? That is how my brain feels. As if it has walked too many miles and it has had quite enough.

Too much thinking.

Too much planning.

Too much organizing.

Too many bizarre questions to answer.

Too many strange problems to solve.

Too many “on hold” phone calls with no return calls, disconnects, no doctor or practitioner to talk to.

Too many issues to deal with.

Too few answers to too many questions.

Today, I’m crabby, out of answers, and tired of being told to call some other (non-answering) number that will connect me with yet another person who thinks I should speak to the doctor but won’t connect me to him or a colleague.

University of Medicine and roads

So competition with my old zing? It isn’t working today. I lack any kind of zing and frankly, going into a long siege of competition to get hold of the doctor or ANY doctor, is more than I can handle.

I am going to make some coffee. Drink some coffee, and brood on why I hate this hospital, even though they are the nicest people in the world. Hard to be both, isn’t it?

You’d think that.

FOWC with Fandango — Compete
RDP # 53 – Zing

AN APPALLING MEDICAL HISTORY – BY ELLIN CURLEY

My mother was plagued by serious medical problems, literally from birth, into her 50’s. She almost died several times. It made her a real fighter. She never let her physical limitations limit her life and always had a positive attitude.

Infants are rarely born with infections. My mom was born with one — not sure which. Maybe an ear infection. When she was three, she contracted polio. She recovered, but her legs were severely damaged. She had to be put into leg braces, which she wore till the age of 13. She also had to relearn how to walk.

Mom at about two years old

At around age five or six, Mom developed a severe ear infection that required painful and traumatic draining procedures every few days. She eventually needed surgery. She had half her head shaved and had to wear a big white bandage around her head for six months. Not so great for her ego at school.

At age 18, at college, she took a drug commonly used in the 1930’s to stay awake and focused when she needed to pull all-nighters. This was often since she had terrible study habits and an active social life. She developed a side effect of the drug and her white blood cells started to die off. The doctors at her college in Wisconsin told my grandmother to pick Mom up and take her home to die.

Mom at college

My grandmother was not going to give up on her daughter. Instead, she found a doctor who gave my Mom typhoid fever — a highly unorthodox attempt to stimulate her white blood cells to start reproducing again. The bold, risky treatment plan worked, but Mom was an invalid for a year, unable to leave her house.

At 20 and married to the doctor who had saved her life, Mom got pregnant. She delivered a five month stillborn boy after 18 hours of labor. After trying to get pregnant again for the next eight years, she was told she could never have children again. As a side note – my Dad, her second husband after being widowed, was also told that he was sterile. So I was quite an unexpected surprise. In fact, when Mom got pregnant with me, her gynecologist gave her shots to bring on her missed periods. It didn’t even occur to him that she could be pregnant.

After about eight relatively healthy years — except for migraines — Mom got rheumatic fever. She was sick and it affected her heart. She was an invalid for two years this time. She didn’t leave her bedroom for a year or the house for a second year. Her first husband, a physician, jokingly said that she was made of ‘biological junk.’

Mom at around 28 or 29

Before she got sick, Mom had been studying acting along with fellow students like Stella Adler, Karl Malden, Susan Strasberg and Buddy Epson. I believe that Lee Strasberg was one of her teachers. She had caught the eye of a Hollywood producer. He wanted Mom and her fellow student and friend, Judy Tuvim, to go to LA for a screen test. But first they were both told to lose ten pounds for the camera. Mom had just started her diet when she got sick.

Her friend, Judy, went on to become Judy Holliday. She ‘made it big’ and starred in Broadway version of “Born Yesterday” and the musical ‘The Bells Are Ringing,” then again in the Hollywood versions. Unfortunately Judy’s career was cut short. She died at 44 of breast cancer.

Professional Head Shot

Mom was left with scar tissue on her heart, which in those days, meant permanent heart damage. She was told she could no longer act, dance, play tennis or do anything strenuous. She had to lead a more sedentary life from then on. She couldn’t continue in acting so she decided to go back to school, finish college and study psychology — due to the influence of her former therapist and family friend, Abram Kardiner, who was soon to become my father.

Shortly after she started school again, her first husband died of a massive heart attack at the age of 43. She was 29. Three years later, she married my father and had me. When I was five or six and she was 38 or 39 at which time she was diagnosed with  lupus erythematosus, a chronic inflammatory disease and it affected her heart. Again. She was warned had to stay out of the sun and would be extremely sensitive to any kind of systemic infection. Exposure to the sun or to an infection like strep throat could trigger a lupus episode with potentially lethal results.

She had to be careful. She was warned to never take public transportation — especially airplanes — because they were breeding grounds for infections. Difficult since she was living in New York City.

Mom at around 40

When I was nine and she was 42, she developed strep. It activated her Lupus and she went into heart failure. More accurately, her doctor panicked when she got strep and gave her a dose of penicillin, even knowing she was allergic to it. The full body rash she developed was what actually sent her into heart failure. She was rushed to the hospital, where her doctor sat with her all night. He told her he was staying because he didn’t know if she would make it through the night. It was touch and go for a few days, but she pulled through, spirits intact.

In 1972, at the age of 56, she had her final bout with heart failure. Once she recovered, she enjoyed 24-years of relative health. Ironically, in her late 70’s, her heart was thoroughly checked out and all the scarring had disappeared, completely healed. So much for permanent damage. There was also no trace of Lupus. That was extremely unusual because Lupus is a chronic condition that doesn’t just go away by itself. There can be a temporary remission, but this was apparently long-term (permanent?) remission — which was (is) unheard of.

Mom in her 50’s

Mom continued to enjoy her Karmic reward of good health until the age of 81, when she got lung cancer. She fought it fiercely for four years, with great positive energy. Always fashionable, after losing her hair to chemo, she developed a unique style with wigs and hats. She died of a metastasized cancer at the age of 85 with her fighting spirit intact.

The medical community has come a considerable way in treatment, especially for heart related problems. Treatment would be much better today and what was or was not wrong with her heart could be diagnosed more accurately and treated with proper exercise rather than withdrawal. Yet even today, that’s a heavy weight of medical problems to deal with for any life.

THINGS WORTH FIGHTING FOR

I read a post about health care in which the entire comment column was made up of people fighting tooth and nail to get rid of health care. Most of the writers were obviously not well-educated people. That’s another way of my saying I don’t think I’ve ever seen such awful language pretending to be English. I’m not talking about typos. These are people who are, at best, barely literate.

And all of them, deeply and powerfully full of hate.

Photo: Garry Armstrong

They were frothing at the mouth with fury at the Democrat’s attempt to keep health care available to everyone. The very idea that this ought to be a battle about serving the health needs of the American people … and not about offering bigger tax cuts for people who already have more money than all the people I know — collectively.

They were furious. Enraged. Spewing violence and filth and hatred. To get rid of health care.

I did not get involved in this “conversation.” It was more an abscess than a conversation, a deep infection which will probably cause someone’s jaw to fall off.  Eventually. There would have been no point. These are not people who are listening to anyone but themselves. They have made up their minds — years ago I think — and do not wish to be confused with facts contrary to their preconceptions.

Aldrich Street as the sun sets

Imagine, for a moment, how much good these same people could do if they were fighting for something worth fighting for? If they were fighting tooth, nail, fang, and claw to keep the water clean. To stop air pollution. To keep developers from flattening every last tree and paving over anything alive and growing. Imagine, if you will, that all of these angry people could be persuaded to care about things that will matter not only to politicians, but to their grandchildren and the children who come after that.

Imagine the power we would have if we could stop hating and start caring.

Imagine.

DOING WHAT WE MUST: SURVIVING IF YOU CAN’T PAY FOR DRUGS – A GUEST POST

Case Management

When you are diagnosed with an illness for which there is no cure, but long time survival is possible, you quickly learn that the most important case manager you will ever have is yourself.  You need to learn everything you can to survive — legally and, if necessary, illegally.  You tend to drop your concern for law when your life is at stake, especially when you will “First, do no harm” (Primum non nocere), the oath of doctors and others helping people survive.

Support group members will urge you to not merely educate yourself about the disease, but to get a good case manager. After you understand all your treatment options and the decisions you will have to make, your case manager can help you navigate the maze of health care bureaucracy. This is important for everyone, whether or not they have a job or insurance. Anyone can be taken advantage of by the system.

Illustration: NBC News

Early after an HIV positive diagnosis, I was laid off from the job which provided my health insurance.  The fight to start COBRA coverage was immediate.  Many states have programs to help pay for continued health insurance under COBRA (Consolidated Omnibus Budget Reconciliation Act).  There may also have other drug assistance programs because the cost of medication, even with insurance, may be out of reach for those without jobs and even those with minimal jobs.

While state help was being lined up, my well-known insurance company was deciding whether to grant continued insurance.  Their basic argument was they were headquartered in another state and therefore were following other guidelines. The case manager got experienced lawyers familiar with this sort of trick to deal with the insurance company.  They finally offered COBRA and the state came through with payments.  This was the value of a knowledgeable case manager, but the process took time.

A Re-Purpose

The interval during the battle for coverage brought other concerns.  I knew I might be able to afford the multiple drugs for a month or two, but the extreme costs would quickly wipe me out.  That is when I learned about “other” assistance.  This kind of assistance is spoken of quietly by those who are desperate, but can be trusted.  It is the kind of help that takes place all over our region, and probably across the country too.

My case manager told me he might be able to help with some drugs, but not all.  When I came for an appointment one day, he told me to wait. He went to a pharmacy and came back with some of the medication I needed.  He took a black marker and carefully crossed out a name and gave it to me. He said it was mine now and not to say anything to anyone about this.  Ever. I left and kept quiet for years.  The agency he worked at is gone now, and I don’t know what happened to the case manager.

He had gone to a pharmacy that had secretly offered help.  When a patient did not pick up their HIV drugs for over a month, they did not put the item back in stock, but held it on the side for emergencies. If the item had been covered already by insurance, and the customer did not pick it up, they felt free to hand it to another. The drug company was paid and the insurance company was none the wiser.  This tactic is illegal, but many will run the risk to save lives.

Helping One Another

Not all managers are so resourceful or willing to run such risks.  Strictly speaking, it is against the law — dispensing drugs without a license.  There are individuals in support groups who are willing to assist with drugs, when no one else can.  For a while, there was an agency here that had acted as a go between to pass drugs from one patient to another.

In support groups, some would mention how they could bring unopened bottles of HIV medicine to the agency and they would keep it for those in need. Then if a member could prove they had a prescription for a particular drug the agency had on hand, they would give a month or two of the drug to the client.  That agency no longer does this or will even admit they did it for many years.  They could be shut down just like the agency referred to above.

Drugs are collected in many ways.  If someone who has gotten a three-month supply of medication, but then the drug was changed by his doctor, he would bring the unopened bottles to the agency to lock up in secret. If someone passed away, a mate might turn in unopened items to help someone else.

The fear of being caught helping to save lives has led many away from this type of help. Patients are left to do what they can for each other via contacts in support groups — or even “on the streets.”  Those fighting the disease can not imagine throwing out drugs that can help others.  Turning in drugs to be destroyed seems a bigger crime than “dispensing drugs without a license” for those who hold a prescription for a life-saving drug.

“Healing those who seek my help”

With the loss of agencies willing to help patients get drugs, legally or illegally, some doctors are willing to fill the void. There are those who collect back unopened drugs so others who can not afford them will benefit.  A doctor knows the prescription of a patient and will generally learn in private conversation who needs help.  If the drugs have already been bought and paid for, it seems a humane thing to do. In this country, this kind of help is unfortunately necessary.

The High Cost of Drugs

HIV drugs come in several classes and a patient is likely to take one or more from each of 3 or 4 groups per day.  Few drugs have generics and even those are expensive.  The retail cost in the United States for three or four of these drugs could run 4 to 5 thousand dollars per month.  Patients receiving various assistance programs are terrified of health care “reform.”  Out of necessity, we help each other.

When I was in Germany and discovered I had miscounted a medication. Of course I was panic-stricken.  I went to a pharmacy, who sent me to a local physician who spoke English.  I told her of my plight. When she was satisfied I had demonstrated I had such a prescription (I always bring proof if I travel), she wrote a new prescription. I went back to the pharmacy, prepared to charge to my credit card an outrageous amount due to my miscalculation. I knew my insurance card would not be honored overseas. The drug was reasonably priced, about one tenth what it costs retail here.

Aside from one doctor I know of, many who would otherwise be willing to help with drugs and health care services have been driven away –or at least underground.  Americans do not have the protections other countries around the world offer. In the absence of legal support, we do what we can to help everyone — not just with advice, but with life-saving drugs denied to many because they can’t afford them.


People without insurance die.
This is not a political opinion. It is a fact. 

NOTE: Since the author isn’t around to answer questions, comments are “off.”  I can’t answer questions because I don’t have any answers, sorry.

MAKE ME FEEL BETTER

I visited my favorite doctor last week. She is the only one of my original set of doctors I kept when I changed insurers. Despite her not being covered directly by my new insurance, she is irreplaceable. She “gets me.” To try to establish this kind of relationship with a new doctor? I’m not sure I’ve got that many years left. Or if there is another doctor like her.

I hadn’t seen her since her in while, so we had some catching up to do. We talked about me, her, life, getting older, and how things don’t feel like they did when we were young. Mostly, we discussed how important it is to feel better.

Anyone who has been sick for a long time knows what I mean when I say “I just want to feel better.”

There comes a moment in time when whatever is wrong with you has dragged on for what feels like an eternity. You can’t remember what it was like to feel good. You’ve done everything you are supposed to do and still, you feel like crap. Whether it’s cancer, recovering from surgery, anxiety, bipolarity, the pain of chronic illness — or any combination of the above plus whatever else I didn’t mention — one day, you just want to feel better.

You really don’t care how. Whatever it takes, whatever drugs, surgery, therapy, whatever. Please, make me feel better. I want a day without pain. Without anxiety, depression, nausea. I want to feel normal or at least something close to that. Whatever normal is. Because I am not sure I clearly remember “normal.”

As far as doctors are concerned, feeling better isn’t a medical thing. You can’t test for it. It doesn’t register on a chart. You can’t log it in the notes. There is no medical value to how you feel. If you can’t put it on a chart or turn it into a statistic, it’s unreal … and unimportant.

To me, it’s the only important thing.

Feeling lousy isn’t an illness, so feeling better isn’t a cure. The doctor keeps telling you you’re fine, except you don’t feel fine. You are tired, in pain, crabby, unable to sleep. Nauseated. Exasperated. Depressed. Fed up with everything.

Just three of my doctors — out of so many — believe feeling good is a legitimate medical goal. One is my primary care doctor, the next is my cardiologist and the last is my shrink. Her task is to help me feel better. “After all you’ve gone through,” she says, “that’s what I can do for you. I can help you feel more like you used to feel before all that horrible stuff happened.”

She understands. She gets it.

I’m going to keep her. The hell with insurance.

HEALTH CARE AND CIVILIZATION

I was on Facebook when I realized the House had actually passed Trump’s new “version” of non-health care. I got so depressed, I went to Steam and bought Civilization VI. I used to play the game three or four versions ago, so I am pretty sure I can figure out how it works. I had finally realized I cannot live on the horrors of politics. It will drive me insane.

It really is driving me insane anyway, even though I’m not personally using Obama’s health care system. Nor are we eligible for Medicaid. This isn’t going to affect us directly, but it is going to terribly damage other people we know and so many more we don’t know. The thing is, we don’t need to know everyone this will hurt to feel bad for them.

When I read this, Garry was watching a movie with headphones. I didn’t want to ruin his movie experience, so I waited until the movie was over. Then, I told him. I think his jaw literally dropped. He didn’t say anything. I understood. What more is there to say that we haven’t said a million times? It took so long to get health care in this country. I came very close to dying for want of available medical insurance and so have many other people.

Mind you, there are lots of people who did die and of course will die. Because they couldn’t get medication, couldn’t afford surgery, couldn’t go to a doctor. Didn’t have access to antibiotics or blood pressure medication or insulin. Because they had a bad heart valve and no money to fix it. A tumor they couldn’t have removed.

People who have no access to medical insurance die. Dead, buried, gone. It’s not a joke or a political ploy. It’s a fact.

So as this “news” was rolling around what’s left of my mind. I was so angry and upset, I didn’t know what to think or whether I should simply give up thinking at all. Exactly at that point, Steam popped up and told me a game in which I was interested was on sale. Civilization VI, the latest in the Civilization game cycle. I had been thinking about buying a game, but hadn’t been sure what to buy and was wondering if I would have the time to play it if I did buy it.

This horrendous piece of news was the clincher for me.  I was so depressed, I bought something that will take me away from all this.

It’s a terrible, evil thing those politicians did today. I don’t know how they can live with themselves.

JUST SAY NO

Remember how, many years ago in a galaxy far, far away — you know,  during the Reagan administration — our government decided the best anti-drug program was “JUST SAY NO!” Make every person 100% responsible for whatever happens to him or her. As history tells us, this anti-drug campaign was so successful, we no longer have drug problems in this country.

So I thought we might use this same highly successful approach to other major social issues.

NO!

Like health care. As we move from an era of medical insurance to “Good luck, buddy,”  we need new coping strategies. How about “Say no to sickness!” If you feel like crap, just say NO. Cancer or heart disease got you down? Smile! A bright smile and a positive attitude coupled with a firm approach, take-no-prisoners attitude to germs and chronic ailments will wipe away your tears. Let a smile be your umbrella when your arthritis is throbbing. If you can’t breathe because you don’t have an inhaler? Say NO to wheezing. Everything will be right as rain.

Gun violence is another good example of a problem that wouldn’t exist if we each had a better attitude. Alternatively, if you are a devotee of second amendment rights, try getting a bigger weapon. When bullets start to fly, just say NO! Like magic, bullets will bounce right off you. Would I lie to you? There is no problem too complicated that magical thinking will not make it disappear. We can fix everything with firm resolve, a positive attitude, and denial.

Speaking of climate change (we weren’t but now we are), there’s no such thing. Nothing is going on. No need to seek higher ground. Well, what about water pollution? Nonsense! Funny-colored smelly water is merely chock full of extra nutrients. Yummy!

JUST SAY NO is the ultimate, cost-effective way to deal with everything. A few television ads and some billboards along the highway and Bob’s your uncle, the problem vanishes. Maybe you can add some pamphlets. If these don’t quite do the job, you’ll probably die. In which case, it becomes someone else’s problem. We all know — at least those of us who have read Douglas Adams — that someone else’s problem, is invisible. If we can’t see it, it’s not there. (Phew. I was worried for a minute.)

It’s entirely up to you. Just say no. And keep saying it .