LOSING EVERYTHING – Marilyn Armstrong

A lot of people figure that everyone “retires” on their own terms in their proper time. That hasn’t been true in our world. Certainly not in Garry and my world. Garry lost his job because the company he worked for decided to move on without “the old guy.” I lost my job because my bosses son needed one.

Many of the people I know were “laid off” which feels exactly the same as getting fired, except there’s no legal reason for it. They just feel like doing it. In Garry’s case, it was clearly age-related. In mine, it was just smarmy.

I’ve known at least half a dozen people who got forced out of jobs they’d held for as long as 40 years. They had no preparations for retirement, no significant saving, and no plans. They all figured they’d work until they hit the official “date” … but it didn’t turn out like that. Not even close.


All the awards you want … but no pension you can live on.


Garry, after 31 years at channel 7, was shown the door in literally five minutes. When he came home, he looked like he’d been bludgeoned. I should mention that Owen lost his job during the same week. It was a hell of a week.

I hadn’t been at that job for very long, but the boss had me “showing the kid” how to do the job. Sneaky. I was in my 60s. There wasn’t another job waiting for me and I was ill.

For two years, we lived on what Garry got as his union payout. No medical insurance — and I kept getting sicker. He was miserable too. He was terribly depressed and demoralized — while I was wondering if I was going to die.

He went to rehab. I found a doctor who would treat me for free and actually invented a surgery to “fix” me because I was very broken. We had no money. To keep afloat for those two years before Garry got his pension and I got disability, we refinanced the house multiple times which bloated the mortgage payment to an impressive amount we couldn’t pay. There was the HARP Program — which Obama started. The problem? The bank didn’t have to let you into the program. Great program, but all you could do was beg. Weird, right?

I had been negotiating with them for months. When finally I got cancer in both breasts, I called and said, “Well, now I have cancer. Can we please get into the program?” I think I actually shamed a banker because a couple of months later, our mortgage payment dropped by $1000 a month. That was the beginning of survival.

I found a doctor who treated me for free. A hospital that never asked for payment. A bank program that cut our mortgage in half. Finally, Garry started getting Social Security and his (very small) pensions … and I finally got Social Security Disability. We went from having no money (blessings on food banks everywhere) to almost being able to make it through a month.

I remember the day when we no longer needed the food bank. It was a small, but meaningful triumph.

Garry stopped drinking. I didn’t die.

These days, when I hear how people are melting down over getting laid off from their jobs and basically losing everything. I’m sympathetic … but mostly, I figure they’ll get over it. Not immediately. Eventually.

You have to get over it. It’s a terrible time. We went for two years without any income. None. Zero. Nothing. Whatever little we had put away disappeared. Somehow, we survived and damned if I know how. I got any help I could from anyone who gave help. I don’t even know how I did it.  We are both alive — and we still have the house. At some point, Mass Health (our version of Medicaid) kicked in. It was the idea on which Obama built his medical plan.

It was designed by our Republican governor. That’s one of many reasons it baffles me that the GOP has been so against it. It was their program.

When this was taken, I weighed 93 pounds. An XXS was too big for me. I wore a size zero and it was loose. It was not an attractive look.

Most people don’t get to retire like in the movies, with or without the gold watch. We get ditched, usually around age 59, typically 6 months before pensions fully vest.

For all of you who got dumped because you got “too old,” yes it was illegal to let you go. It’s called ageism, but it’s done all the time. You can sue, but unless you’ve got money to live on while you sue, by the time you get paid off — and you will get paid off if you can hold out long enough — you’ll be up to your lips in debt.

Did we have mental meltdowns? Sure we did. That’s why Garry needed rehab. I would have been more melted down, but I was trying to save my life and it was sheer luck I bumped into a doctor who introduced me to another doctor who took me in. I was days from my demise by then.

I developed a sort of yellow-green complexion. Which was also not very attractive

If you have had a life calamity and everything gets taken away, it will take a couple of years before you pull yourself together. It’s not just your finances that take a hit. Your soul gets maimed. Your self-esteem goes down the tubes.

When anti-medical care legislators say “no one dies from lack of medical care,” that’s bullshit. Lots of people die without care. They don’t get written up because they aren’t in the hospital or seeing a doctor. They just die. Kids, old people, and all the others in the middle.

Why am I talking about this?

Because those of us who had this terrible disaster overwhelm them need to know we aren’t alone. It wasn’t just us. It’s lots and lots of people many of whom used to be solidly middle class before their world collapsed.

So try to remember one thing:


It gets better. Somehow, someway, it gets better.


STUPID IS THE NEW NORMAL – Marilyn Armstrong

96-OneRuleToRuleThemAll

My motto and I really should remember it more often

For the past couple of days, I’ve been dealing with the customer service for the medical plan I was trying to join. I spent — LITERALLY, NOT KIDDING — four hours on the phone yesterday until the battery on my phone died. It has never died before. Ever. In like five years. It’s not a cell phone.

They couldn’t answer a simple question, they gave me wrong answers, transferred me to the wrong departments, but to be fair, they didn’t disconnect. A miracle indeed. At the end of the conversation, I said: “SEND ME BACK TO BLUE CROSS!”

And then and there, I switched back to my previous medical provider. Because if this was before the plan had even gone into effect, it was going to be like the year I spent with Fallon when I needed to see a medical oncologist and the person on the Customer Service line told me there were doctors listed, but not their specialties.

“So how do you list them? Alphabetically?”

My doctor’s (not this doctor, the doctor before the last doctor) dimwitted secretary sent me to a cancer surgeon and when I called her back and explained that I don’t need a surgeon, I need a medical oncologist because I had cancer and what I need NOW is a checkup. I went with that company for a year and never actually got the checked.

Then came Blue Cross and life got better. This plan would have saved me around $150 a month which is a good deal of money, but I was pretty sure it would also ruin my life. I can’t do it anymore. I cannot spend the rest of my life fighting with customer service to just answer a simple question. I’m too old, too tired, too beat up.

I’ll pay the money. Just let me have people who answer the phone and know what they are talking about. Please!

And for all the comments I haven’t answered and posts I haven’t read? I swear to you I have spent about 9 hours over the past two days straightening out my medical plan — well, OUR medical plans. I’m exhausted. And I’m running out of birdseed again.

MEDICARE FOR ALL: WAY TO GO AMERICA! – Marilyn Armstrong

Fandango’s Provocative Question #48

Personally, we both are on Medicare because we are at an age where we deserve it. Lord knows we paid enough money over the years for the privilege of having doctors when we got old.

Medicare is a pretty good system and it is getting even better. The people who run it are competent, ready and willing to talk to you any time of the day or night. They are incredibly patient, which really helps because a lot of people on Medicare are not entirely “all there” anymore.

Medicare’s way of distributing drugs was deeply flawed and still leaves a lot to be desired, though it is better than it was. Their unwillingness to deal with — until this year — seeing, hearing, chewing, and breathing was cruel.

I don’t know if the changes we are seeing this year are local Massachusetts changes or national, but this year we are actually going to get enough money to buy a pair of eyeglasses, get our teeth cleaned and x-rayed and if Garry still needed them, hearing aids. Too bad they are available now because a few years ago, Garry really needed them.

We just changed from BlueCross to Harvard-Pilgrim. It will save us about $170/month and we can keep all our doctors (I checked). Also, since we’d use the same hospital where they already have all our records, I wouldn’t have to get a new institution “up to speed.” I honestly didn’t think I could cope with swapping all my doctors again and records again.

Do you believe the government of a country has a responsibility to provide universal, affordable (if not “free”) healthcare for its citizens?

Yes. Absolutely.

If you live in the United States, would you favor Medicare for all/single-payer health plan?

Having lived in Israel where medical care is free if you are poor, but if you aren’t quite that poor, you can buy into any one of a number insurance plans that give you other options, like private doctors rather than clinics, or one of the groups that offer more options for natural care. But all medical care uses the same hospitals and surgeons are not your choice but are based on your problem(s) and who they think can best solve it.

You got incredibly good medical care, probably because there are more doctors per capita in Israel than anywhere else in the world. Well, you know. Jewish doctors are a “thing.” Half the doctors were American or British, too. All the top surgeons were American — but of course, that was the 1980s and things have probably changed.

The thing is, you had a choice of how you wanted the services delivered, but one way or the other, you were entitled to the services. Everyone had medical care, free or paid. Whether you were a citizen or tourist, you could go to the nearest health clinic and they would take care of you. No identification needed.

Medicine was free. For everyone.

It was such a good system that I think that’s what we should have here. You can use the government “free for all” system or spend a bit more money and get extra services. But regardless, everyone gets medication at no cost. No one is left out of the system.

If you live outside of the U.S., does your government provide universal healthcare? If so, how do you feel about it? If not, what kind of healthcare coverage do you have?

See my answer above. Having lived in two countries with two very different medical systems, Israel’s was really great. I think Switzerland has a very similar system too.

IF THE TRAINS DERAIL, RAISE THE RATES – Marilyn Armstrong

I finally had to tell Garry that I have one more stenotic, broken vertebra. L 4-5-6 were fused when I was 19. Despite a lot of abuse and arthritis, those three are still (more or less) fused. They don’t feel particularly happy, but they should hang together for the duration. Unless I do something really stupid, like fall off a horse or down the stairs, or have a serious auto accident.

Sometime during the past couple of years, the S-1 vertebra — the one at the very bottom of the spine which supports the whole shebang — broke. I don’t know when it broke. It may have just decayed or been damaged by arthritis. I didn’t have an accident or fall, so I’m just assuming it more or less fell apart all by itself. knew something was wrong because I was finding it so difficult to walk.

There’s nothing to be done about it. I guess we could, as my friend Cherrie says, call this “My new normal.”

Anyway, what would I do with a wheelchair? Even a small one is too big for this house and we live on a road that doesn’t have a sidewalk. In town, the sidewalks are a disaster; so full of potholes, you don’t need a disability to fall on your head.

Boston’s no better. The Commonwealth has been busy “saving money” by failing to provide basic services … but hey, we have a full treasury again. It wouldn’t be a bad idea to spend some of that money and create safe sidewalks, ramps for wheelchairs, and repair our crashing trains. They’ve been derailing, rolling over, and generally banging into each other. There are lots of software fixes for these problems, but the tracks are so old and decrepit, you can’t install the new software.

So, realizing they had a transportation issue (and have had this same issue for all the years I’ve lived here), you know what they did to fix it? They raised public transportation prices.

A lot of people are very grumpy about it. No idea why.

Most public places don’t have ramps. For wheelchair users, there are few down ramps at intersections. In our little town, we have one traffic light and a few random stop signs to which no one pays any attention and sidewalks that resemble tank traps.

When I first moved to Massachusetts, I had to ask a friend if the driving laws were different. No-one stopped at signs or lights. I figured they must know something I didn’t know. It turned out, they just don’t LIKE traffic laws.

Someone once said the only way to get a moving violation in Boston was to run over the Governor. It really encourages one to keep walking as long as possible … though there are days …

THE JOY OF MEDICARE – Marilyn Armstrong

I belong to Blue Cross Blue Shield Advantage Value Added PPO group, which is a Medicare plan that offers extras but costs just a tiny bit more than basic Medicare.

Last night, in a moment of mindless stupidity, I decided to register for my medical plan. Usually, I just call them, but it was after hours and I just wanted to look up the price of a  medication. Which I could do online. If I registered.

This is the cutest little Tufted Titmouse I think I’ve ever seen.

No big deal, right? Fill in the form and voila, registered. Medicare was even easier. You could just call them and do it all by phone. I think it took me all of 10 minutes to register for Medicare in the five years I had straight Medicare before I switched to the BCBS Value Advantage plan.

I entered most of the registration information at which point I was told that I had “timed out” and would have to do it again. So I tried to do it again BUT it would not let me because it already had my ID and password — basically everything except my Medicare number.

The gallant Tufted Titmouse – He’s blue and yellow!

I have a week coming up of major medical exams — heart and head and back and more about my eyes.

I was going to die as a result of software glitches. I could cope with being eaten by an alligator or a Gila monster … but SOFTWARE? Seriously?

I tried to call them to fix it but got the “closed for the weekend” message. Starting October 1, they are open 24/7, but this isn’t October. Close, but no cookie. I ultimately discovered that the databank is closed all weekend because they are setting up for the incoming members for 2020, but I didn’t know that until later.

Finally, I finally managed to connect with someone who informed me that my membership had expired.

What?

Expired?

I pay my Medicare/BCBS advantage plan straight out of Social Security. When I was told I belonged to Aetna, not BCBS, I gurgled. I’ve never worked with Aetna AND. I had the BCBS card in my hand. It was blue, blue, and blue. A Blue Cross. A Blue Shield. A blue card. All the ink was blue. \

I had the wrong department and the person I was talking to didn’t have any idea what was going on. I’m not even sure she knew was software is. The right department was closed until Monday and I have a doctor’s appointment early in the day.

By now, after 2 am. I was tired. I knew I’d be even more tired by morning. At this point, all I now wanted was an assurance I was signed up and hadn’t somehow inadvertently or via glitchily cancelled my medical plan.

Forget the price of medications. I was too tired to keep on keeping on, so this morning I got up and called the number that was supposed to work, but it was closed until Monday. Of course.

I also got transferred a lot, but at least not disconnected. Everyone was enormously polite, friendly, and unable to help me. At all.  Of course, no one mentioned that the databank was down, too. That was the guy at Medicare who told me. How come HE knew but the people at BlueCross didn’t know?

One Titmouse and a Chickadee. They will share the feeder … but from opposite sides and they never touch.

I was getting increasingly frustrated. So after I had coffee in hand, I tried calling in a prescription. I figured if I wasn’t signed up, they’d tell me because my card wouldn’t go through. Nope. It went through fine, no problem. Not only did it go through fine, but it went through for a medication that had no refills left. I have to call back and make sure she has the right number. Regardless, it was the first good news of the day.

Having tried every single number for BlueCross and getting nothing but people who didn’t seem able to access my type of BCBS care, I chanced upon the 24/7 number for Medicare. Even though I have an Advantage plan, it’s still a version of Medicare, so one way or the other, I had nothing to lose by trying.

And this is why I love Medicare. Not merely are they REALLY open 24/7 all year long, but they are consistently helpful, polite, and cooperative. If they don’t have the answer, they will find it, no matter how long it takes. And they never put me on hold.

I explained that I had had a software glitch with BlueCross and with an early doctor’s appointment Monday, I didn’t want to find myself dying due to a computer glitch. That would be too pathetic.

The guy at Medicare checked and said, “Don’t worry. There’s no problem. You are paid up and everything works.

So for all you people who are afraid of Medicare? Don’t be. It’s great. It really isn’t one of those messed up government agencies. In fact, I am convinced it is the ONLY government agency where everything actually works just like it is supposed to work.

Now at least I know I would not die from bad software and be buried in an Amazon box.

You all will LOVE Medicare. I promise.

To make things even better? The birds have already begun to return. There was a flock of Tufted Titmouses on the feeder this morning. Where there’s a Titmouse, can the American Goldfinch be far behind?

BUT WHAT HAPPENS IF THE FAX IS BROKEN? – Marilyn Armstrong

In case you haven’t noticed, doctor’s offices rely heavily on faxes to get prescriptions to the pharmacy. Although that has always left me a bit twitchy — personally, fax machines and I get along about as well as my printer and I get along, which is to say, not well — I have come to assume they know what they are doing.

I know, for example, that my doctor’s office is very good about getting prescriptions done quickly. If I call in the morning, the pharmacy usually has the script ready to pick up in an hour or two. Considering I pretty much left my last two doctors because they couldn’t seem to get a prescription ready inside of a week, I consider this amazing.

Windy day in a parking lot

Since two important prescriptions were canceled last week due to unavailability and we are planning to be away on vacation next week, I’ve been trying really hard to get all this stuff worked out. There really isn’t anything crazier than realizing your script ran out and you’re miles from your pharmacy.

I got the prescription worked out for the pain medication over the weekend. Not only did I get a prescription, but it works a lot better than the previous one. I actually wake up in the morning feeling like I can move. Not very fast at the moment because my left knee is pretty dodgy, but the rest of me feels almost like … well … normal. I didn’t think it was possible!

As for the Adderall gone missing, it’s all CVS’s fault. Through some accident — I’m serious about this, so laugh all you want — they ordered ALL the Adderall. All of it. So if you don’t shop at CVS — I don’t because I can go to Hannaford and get a prescription immediately — while it’s always a half an hour wait on a long line at CVS. For just about anything.

But honest to god, that’s what the doctor’s office told me. So all the smaller pharmacies are completely out until the next order. You think maybe CVS did it on purpose?

Eventually, we got this worked out. I’m getting double strength pills and I just have to split them. I already split some of my BP meds, so it’s no big deal … but I had a lot of weird mental issues about CVS ordering ALL the Adderall from the manufacturer. They must have tons of it. Literally tons.

The problem with my regular doctor was far more peculiar. I called, said the medication had worked gangbusters and I was really happy with the replacement and they said they would ship the fax over immediately.

But the pharmacy didn’t have the fax. I called again — both doctor and pharmacy — and the doctor’s office sent another fax and Hannaford didn’t get it.

Because, as it turns out, the fax machine was broken.

Some of the ladies who work in the front office are not tech savvy. They manage to deal with computers, but they always look emotionally and mentally strained. They are sure — always — that something is going to blow up.

I’m very patient with them. They are nice women and work hard. Not everyone does well with electronics, even very smart people. I can do almost anything with a computer but put me in front of a printer or fax machine and my brain dies.

Photo: Garry Armstrong

Their fax machine was broken. That’s why Hannaford didn’t get the fax.

Apparently, they didn’t know anything was wrong until they started getting calls from all the pharmacies in the area that prescription faxes hadn’t arrived. Putting two and two together, they got at least 22. Most of the pharmacies agreed to take the orders by phone — just this once. I guess now they are going to have to (gasp) buy a new machine. Hook it up. Convince it to connect. It’s probably wireless and will only work when it feels like it.

Just like my printer.

So I spent almost all day on the phone because the fax machine in the doctor’s office is broken and they didn’t know it. Apparently, the people at the pharmacy worked through the problem with them.

And meanwhile, my glasses are ready to be picked up tomorrow! Yay! Are things finally beginning to run a little more smoothly? Will we make it to vacation alive? Tune in!

IDIOPATHIC – Marilyn Armstrong

FOWC with Fandango — Idiosyncrasy

I am the proud owner of a body which does its own thing Although I knew the word “idiosyncrasy,” until I got into understanding “doctor-speak,” I didn’t really understand the word.

When a doctor says you have an “idiopathic neuropathy” in your left foot, it means your left foot doesn’t work the way it should and he/she has no idea why. Anything idiopathic in medical language is the equivalent of the doctor shrugging his or her shoulders.

Over the years of my life, many things have been officially idiopathic or, as I prefer to put it, idiotic.

Reflexes that stop working. Sensations that disappear (aka “idiopathic neuropathy”) and later reappear. Idiopathic dizziness, idiopathic raising/lowering creatinine, changing levels of red blood cells, iron deficiency, electrolytes that vanish, then reappear … and the list goes on.

None of these things have ever been diagnosed. All of them eventually went away without medical intervention. Frequently, my hardest act to pull off is not letting them give me medication that is going to give me a whole new set of problems I didn’t have before.

It’s not that I don’t think we all need regular checkups. We do.

But our bodies do stuff. On the whole, a lot of it doesn’t mean anything important. Our bodies adjust themselves, pushing this level up and another down and when it sorts itself out, it settles down. We have become so used to reading stats that when anything seems out of line, this doctor or another feels he or she should DO something about it.

First, they have to figure out what to do and that always involves a lot of expensive testing. After which the result is usually nothing. Sometimes you hear, “You’re getting older” — as if I didn’t know that. My personal favorite: “You should probably drink more liquids.” Thank you for reminding me.

My favorite line yesterday was the nurse who asked me why the electronic blood pressure machine doesn’t work on me. How in the world would I know? Ask the machine or its manufacturer. Read the manual.

Or forget the machine. Take a standard, manual blood pressure reading, the kind every nursing student learns during their first five minutes in training.

EKG setup

It’s why I often wonder why do a dozen tests so they can then tell you it was “a massive yet idiosyncratic drop-off of blood sodium levels” that should have killed you. “It’s amazing you could even stand up.”

Not only did it not kill me, but if they hadn’t called and told me something was terribly wrong, I’d never have noticed anything. It did, as it turns out, finally explain those cramps in my legs and feet.

Electrolyte insufficiency. If I drink Gatorade or any of the dozens of other electrolytes drinks, my legs and feet don’t cramp. After years of pain and agony, the answer was “sports drinks.” I don’t have to take any expensive and likely to kill me medicine, either. Amazing.

Meanwhile, I learned yesterday I still do NOT have cancer (again). My anemia is gone. Let’s hear it for those little, dissoluble iron pills. All my levels are NORMAL, especially for someone who had two kinds of cancer nine years ago, and major heart surgery 4-1/2 years ago.

I’m in fabulous condition — except for the broken spine. the hypertrophic obstructive cardiomyopathy, and the dysfunctional gastrointestinal thingamabob. Also, whatever was making my left eye cease seeing has gone away so I can probably skip the expensive tests they were going to run.

Glass on glass

I probably didn’t have a stroke. Maybe I just need tinted glasses. I absolutely need new eyeglasses because I can’t see very well at any distance except really close up. Maybe I can get the hospital to pay for them instead of $10,000 worth of tests they were going to run.

Just call me idiopathic

FEELING A BIT WAN – Marilyn Armstrong

RDP Thursday – WAN

After yesterday’s doctor visit, having to go to yet another doctor seems like charging up the same hill — and there’s a guy at the top with a machine gun. Nonetheless, gotta do it. I still don’t know where to put my head. I feel like I carry poisonous genes and have passed them down the line.

But, speaking of wan, I’m still in the process of trying to work my way out of anemia — the last of the repairable issues on my medical agenda. I’ve actually found an iron pill that seems to work and doesn’t make me ill. I’m not taking enough of it, I know, but it beats out the nothing I was taking before.

I’m beginning to really resent DNA.

Junco and I think a House Finch

Isn’t what you inherit supposed to be a sort of grab-bag? You get some of the stuff, but not ALL of it? Because I seem to have collected everything and be in the process of passing it along.

The good news? Yesterday’s doctor seemed to think that I didn’t look particularly anemic now. My gums have stopped being pale and that’s a good sign. Now all I have to do is worry whether or not I’ve managed to pass everything along to another generation. Or two.

So feeling wan? Literally and figuratively. At the same time!

INTREPID BY ROAD – Marilyn Armstrong

FOWC with Fandango — Intrepid

Intrepid will always be the name of one of Horatio Hornblower’s ships. Somewhere in my 20s, I discovered Horatio Hornblower … and that’s how I learned that there was an actual use for trigonometry! If only they had mentioned this in school, I might have had a clue what I was doing instead of random calculations used to reach an answer that meant absolutely NOTHING to me.

We probably should have named The Duke “Intrepid.” He is quite the intrepid voyager. Except he likes when we come out and let him IN the yard, even though he jumped out. I guess out is easier?

Today I am off to see the wizard, also known as my cardiologist. He’s a new one. I’m trying to finally shake off Boston and get all my physicians lined up locally. Boston made the news the other night as officially (who is the official calculator of such things?) having the worst traffic of any city in the U.S. Not in the world. I think there are quite a few cities in Europe (and how about the traffic in London!) that could compete.

Boston has gotten terrible. When I moved here in 1988, traffic wasn’t great, but you could get from one place to another and generally even park when you got there. Not any more. Not only can it be impossible to get there, but if you do parking will cost the price of feeding two people for a week. Or more.

Bad. Very, very bad.

We spent something like 50 billion dollars to remodel our road and I swear they are worse than they were before we spend more than a decade redoing everything. The thing is, they move things around, but they didn’t make them bigger. Just stuck them underground (cough, cough, cough) or straightened out the crooked pieces.  So we’ve got nice straight bumper-to-bumper traffic.

Boston traffic is only for the intrepid.

We’re away shortly. As we head for UMass, a mere 20 miles away, call us intrepid. Also, please hope they don’t find anything new or interesting.

TOM’S CATARACT SURGERY – BY ELLIN CURLEY

Recently, Tom’s cataracts started to give him problems driving at night. He began seeing large halos around the headlights of the oncoming cars, which made driving a challenge. He went to the eye doctor who told Tom that his cataracts were ‘ripe’ and it was time to get cataract surgery in both eyes.

Now, no one looks forward to someone slicing and dicing their eyeballs, but Tom was borderline phobic about anyone touching his eyes. We had two close friends who had recently had the surgery and they both reassured Tom that they had felt nothing during the procedure and little if any discomfort afterward.

Tom listened to them but didn’t believe them on some level. So he procrastinated about scheduling the surgery – and procrastinated, and procrastinated.

When he finally scheduled it, he didn’t feel good about it. He worried more and more as the surgery date drew near and he reached a peak of panic the sleepless night before D-Day. On the ride to the surgery center, as well as in the waiting room, Tom kept repeating that he really didn’t want to do this. I began to worry that he might make a run for it.

Of course, Tom had to wait endlessly at the doctor’s office before he was finally taken in for the seven-minute procedure. So by the time he saw the doctor, his blood pressure must have been off the charts. Fortunately, along with buckets of numbing drops, they gave him some ‘good drugs’ to relax him.

I waited anxiously in the waiting room for an hour before he came out the other end. During that time, I saw a veritable parade of post-surgery patients, smiling in their identical pairs of unfashionable sunglasses. I relaxed as I realized that no one seemed freaked out or even stressed.

So I was not surprised when Tom reappeared, gushing about what a weird but not unpleasant experience it had been. As he had been told, he felt nothing but water being pumped into his eye. He saw strange lights and heard psychedelic music, which made it all feel like a mini acid trip.

Tom in his ‘cataract sunglasses’

Fresh out of surgery, his eye was blurry and totally dilated, and he felt like he had a grain of sand in his eye, but he could already tell how much better his vision was. Everything was brighter and clearer, especially colors. Tom said it was as if he had been looking at the world through a yellow filter and suddenly now he was seeing everything in vibrant, living color.

We bumped into an old friend in the waiting room who was coming in for the same surgery. Tom went on and on about how awesome his vision was now and told his friend not to worry but to get ready to be amazed at how colorful and sharp the world is.

By the next day the dilation was gone and even though only one eye was fixed, Tom’s vision was dramatically improved. He no longer needed his glasses for distance vision but will still permanently need reading glasses. Not a big deal. He also could see that our sunroom was painted bright blue, not green or teal.  And he was telling everyone what a miracle he had just experienced!

Tom seeing great without his glasses for the first time in decades

Now Tom can’t wait for the second surgery!

DETERMINATION CAN GET YOU THROUGH, BUT IS IT WORTH IT? – Marilyn Armstrong

FOWC with Fandango — Determined

I can relate to determined.

It was that kind of day. We needed some food, but no money comes in until next Thursday, so we are flat broke … but prescriptions still need to be filled. I sent Garry to the store with a list and a reminder that we are seriously broke, so ONLY get what’s on the list.

Also, I had to reschedule a hospital appointment because they’ve deferred me so often, the original tests are two months old and I don’t even know if I’m still anemic or it has bounced back to normal. I’ve been on the edge of below or slightly above anemic most of my life so it wouldn’t surprise me if I was now back in the normal range.

University of Medicine and roads

I have no complaints about the medical care at UMass Memorial, but getting an appointment in a reasonable amount of time is crazy. Garry got in fast because … well … he knew someone. That’s right. He had an old connection from his working days. I, on the other hand, do not have a connection. Worse, UMass is the kind of place where they don’t listen to you.

I have seizures. Short, limited, with a quick bounce back — but still frightening. I thought, after the last one, I should see a neurologist. Garry, who has the hell scared out of him, agreed. My doctor agreed. We all agreed, but I could not convince any neurologist at UMass to see me without requiring I get a head MRI first.

My doctor and nurse couldn’t convince him either. He was dead set on that MRI, even though I would probably have all my problems solved because following the MRI, I’d be dead.

You see, I have a metal pacemaker in my chest. Even being in the room with MRI equipment would kill me. Literally, would tear the pacemaker out of my chest and leave me gored, bloody, and dead. I can’t prove it because apparently, I’m not mentally equipped to explain my medical problems on my own.

So I never saw a neurologist. Never talked to one. Never heard from anyone. It has been months, maybe close to a year. Every time I get a bit dizzy, I’m terrified I’ll have another seizure, but since I can’t see a neurologist without dying, I figure I’ll have to live with the seizures.

And now, it’s time to change cardiologists because Garry and I are getting too old to haul our asses into Boston. I need a local doctor. Even though I can and did completely describe my heart surgery — all of it — I still have to prove it. PROVE IT?

How do you prove heart surgery? Can’t they just call Beth Israel and get the records from them? I may have the records somewhere, but they aren’t “legal” if they don’t come from the hospital. But we have all these medical privacy laws, so they can’t GET the records without a lot of transferring of paperwork.

Medical Building and ramps

Meanwhile, I still have to go to the lab and get my tests redone and maybe  (MAYBE!) they will be done before I go to the hospital where they will take my entire medical history again and it will be the same as the ones they’ve taken before including all my medications.

ALL of this information — everything that has ever happened to my body — is in their computer including the heart surgery, both replaced heart valves, the bypass, pacemaker, and cardiomyectomy. They have the serial numbers for each implant (I am full of serial numbers) and serial number for both of my breasts that are ALSO implants. I will never be an unidentified corpse on a slab because all of my body parts have their own USB code. Unless they fix that computer, too.

Everything has been put on their computer. But, since they “fixed” their software program, they can’t find anything.

And then there was the telephone which doesn’t work and the ten pounds of mail I have yet to finish sorting.

That’s been my day. How has yours been? You have to admit that only a determined 72-year-old woman could make it through this sort of day.  When I was done, I cooked dinner. Mussels with spices, tomatoes, Worcestershire Sauce on angel hair pasta. And I cleaned up, too.

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.

LOSING YOUR JOB WITHOUT LOSING YOUR MIND – Marilyn Armstrong

A lot of people figure that everyone “retires” on their own terms in their proper time. That hasn’t been true in our world. Certainly not in Garry and my world. Garry lost his job because the company he worked for decided to move on without “the old guy.” I lost my job because my bosses son needed one.

Many of the people I know were “laid off” which feels exactly the same as getting fired, except there’s no legal reason for it. They just feel like doing it. In Garry’s case, it was clearly age-related. In mine, it was just smarmy.

I’ve known at least half a dozen people who got forced out of jobs they’d held for as long as 40 years. They had no preparations for retirement, no significant saving, and no plans. They all figured they’d work until they hit the official “date” … but it didn’t turn out like that. Not even close.


All the awards you want … but no pension you can live on.


Garry, after 31 years at channel 7, was shown the door in literally five minutes. When he came home, he looked like he’d been bludgeoned. I should mention that Owen lost his job during the same week. It was a hell of a week.

I hadn’t been at that job for very long, but the boss had me “showing the kid” how to do the job. Sneaky. I was in my 60s. There wasn’t another job waiting for me and I was ill.

For two years, we lived on what Garry got as his union payout. No medical insurance — and I kept getting sicker. He was miserable too. He was terribly depressed and demoralized — while I was wondering if I was going to die.

He went to rehab. I found a doctor who would treat me for free and actually invented a surgery to “fix” me because I was very broken. We had no money. To keep afloat for those two years before Garry got his pension and I got disability, we refinanced the house multiple times which bloated the mortgage payment to an impressive amount we couldn’t pay. There was the HARP Program — which Obama started. The problem? The bank didn’t have to let you into the program. Great program, but all you could do was beg. Weird, right?

I had been negotiating with them for months. When finally I got cancer in both breasts, I called and said, “Well, now I have cancer. Can we please get into the program?” I think I actually shamed a banker because a couple of months later, our mortgage payment dropped by $1000 a month. That was the beginning of survival.

I found a doctor who treated me for free. A hospital that never asked for payment. A bank program that cut our mortgage in half. Finally, Garry started getting Social Security and his (very small) pensions … and I finally got Social Security Disability. We went from having no money (blessings on food banks everywhere) to almost being able to make it through a month.

I remember the day when we no longer needed the food bank. It was a small, but meaningful triumph.

Garry stopped drinking. I didn’t die.

These days, when I hear how people are melting down over getting laid off from their jobs and basically losing everything. I’m sympathetic … but mostly, I figure they’ll get over it. Not immediately. Eventually.

You have to get over it. It’s a terrible time. We went for two years without any income. None. Zero. Nothing. Whatever little we had put away disappeared. Somehow, we survived and damned if I know how. I got any help I could from anyone who gave help. I don’t even know how I did it.  We are both alive — and we still have the house. At some point, Mass Health (our version of Medicaid) kicked in. It was the idea on which Obama built his medical plan.

It was designed by our Republican governor. That’s one of many reasons it baffles me that the GOP has been so against it. It was their program.

When this was taken, I weighed 93 pounds. An XXS was too big for me. I wore a size zero and it was loose. It was not an attractive look.

Most people don’t get to retire like in the movies, with or without the gold watch. We get ditched, usually around age 59, typically 6 months before pensions fully vest.

For all of you who got dumped because you got “too old,” yes it was illegal to let you go. It’s called ageism, but it’s done all the time. You can sue, but unless you’ve got money to live on while you sue, by the time you get paid off — and you will get paid off — you’ll be up to your lip in debt.

Did we have mental meltdowns? Sure we did. That’s why Garry needed rehab. I would have been more melted down, but I was trying to save my life and it was sheer luck I bumped into a doctor who introduced me to another doctor who took me in. I was days from my demise by then.

I developed a sort of yellow-green complexion. Which was also not very attractive

If you have had a life calamity and everything gets taken away, it will take a couple of years before you pull yourself together. It’s not just your finances that take a hit. Your soul gets maimed. Your self-esteem goes down the tubes.

When anti-medical care legislators say “no one dies from lack of medical care,” that’s bullshit. Lots of people die without care. They don’t get written up because they aren’t in the hospital or seeing a doctor. They just die. Kids, old people, and all the others in the middle.

Why am I talking about this?

Because those of us who had this terrible disaster overwhelm them need to know we aren’t alone. It wasn’t just us. It’s lots and lots of people many of whom used to be solidly middle class before their world collapsed.

So try to remember one thing:


It gets better. Somehow, someway, it gets better.


THE TIMELINE – Marilyn Armstrong

Finally, last night, I figured out that I’ve got between 10 and 12 years to live. It would be great if it were longer, but that’s pretty much what I’ve got and I want to live them well.

The math isn’t complicated. Hopefully, I’m finished with cancer. As much of my gastrointestinal tract has been removed as can be removed. My spine is completely calcified and most of the time, I can barely move.

The valves and Pacemaker they put into my heart are stamped and dated. They have time limits and the clock is ticking.

I’ve got two replaced heart valves: the mitral and the aortic.. Both are made from animal parts (valves?) and have an average life of 15-years. I’ve had them for nearly five years. They can last a little longer — sometimes as much as 17 years or as few as 12. Four down, let’s say ten to go?

Then there is the Pacemaker. The battery runs out in about 10 years, at which point they will want to open me up, remove the old pacemaker and replace it with a new one with a new battery. I think maybe since they have made major improvements in Pacemaker technology since they put this one in me four-years-ago, I could have this one replaced with one of the newer ones. Better batteries. And not metal.

That way, I wouldn’t have to wait until my eighties when I doubt I’ll want to go for heart surgery, minor or major.

My post surgery heart pillow; You grab it and hug it when you need to sneeze or cough, it is supposed to make you feel better. It doesn’t.

The valves are a larger problem. I know they are making progress designing replacement heart valves which last longer and work better, but whether they will be ready for me – in this lifetime – remains to be seen. As it stands right now, I have about 10 years. Maybe 12. After that, it’s time to say goodbye.

Unlike most people, there’s an actual clock ticking in my chest. Optimism will not make a difference. The timeline was created the day they did the surgery — five years this spring. The best I can do with it is pay forward on the Pacemaker (if they let me) and hope for the best with the valves.

Meanwhile, I am coming off a two-week remission of pain and misery using Prednisone.

I know Prednisone has a lot of side effects, especially for a woman my age with heart issues. Nonetheless, this two weeks using Prednisone has been the best two weeks I’ve had in years. I’ve been able to walk upstairs. Down is harder because it’s a balance issue, but I can walk upstairs. Slowly, but I can do it. I’ve been able to sleep in a comfortable position … which means I’ve been able to sleep.

I can get out of this chair without pushing myself up with my hands. I didn’t have to limp between the kitchen and the bathroom. In short, I have felt like I’m really alive. Now that I’m down to my last four tablets, I have been doing serious thinking about how I want to spend these next ten years.

I probably can’t take a full run of all-the-time Prednisone. That would more than likely wind up ending my life sooner rather than later … but maybe intermittent Prednisone? Like two weeks on, a month or six-weeks off? If I’ve got a limited lifespan, I would like to live it. Enjoy it.

I want to be able to move and not spend most of my life fending pain.

I’ve run out of options. I can’t take any NSAIDs. I am already taking narcotics light and I don’t see heavier doses as a direction I want to take. It doesn’t make the pain go away and it makes me stupid. What’s more, I’m allergic to most of them.

So, following the holidays, it’s time for a long, complicated talk with the doctor.

I can hope science will make a great leap forward that will change my future. Otherwise, I would like to make sure I don’t spend the remainder of my limited time battling pain. And you never know. They might find the miracle I need. It could happen.

Sensible ideas are welcome. I have choices to make and it’s time to make them.

MY COCHLEAR IMPLANT: THE 3-MONTH AUDIOLOGY EVALUATION – Garry Armstrong

LEARNING TO HEAR by Garry Armstrong, 
Photography: Marilyn Armstrong

Sing “Hallelujah” softly and this year, I will hear you. Crystal clear!

One of many hearing tests

That’s the lead on a delightfully mild Monday as I look back on today’s evaluation of my Cochlear Implant at UMass Memorial Hospital.

It was like getting an A on your first major exam in college.

Nicole Seymour, audiologist on the job!

Last week, I got excellent grades at the surgical evaluation of the Cochlear procedure. All the stuff placed inside my brain was line-dancing with the receiver parts atop my head and right ear. No unseemly scars, bumps or rashes. Even my fast receding hairline appears to be flourishing.

Is this a side perk?

Garry in the booth, listening to the test signals

Today was a detailed session of testing and adjustments. I sat in a small room that looks like Interrogation Room 1 on NCIS, but with more electronic equipment. I went through a series of tests administered by my audiologist. The tests involved various levels of single-word recognition, complete sentence awareness, and range of tone comprehension.

It’s harder than you think.

Putting the equipment on again

If you’re hearing-challenged, which is to say, deaf, you have problems with all these things. Single words that rhyme – led, dead, bread, red are easily confused. Whole sentences are often misinterpreted, sometimes leading to misunderstanding and embarrassment. High and low tones aren’t audible. I couldn’t tell the difference, so statements and questions sounded the same.

Consultation

I sat tensely – my body coiled – as I sat for decades during my TV news career. Struggling with interviews, courtroom testimonies, and pivotal political speeches. My breath came in rushes because I wanted to be successful.  A lot rides on the cochlear implant. At age 76, this is a major turning point. 


I can experience clear hearing for the first time in my life.

I clearly heard many of the words, sentences, and sounds.  But some of it was guesswork, just as it was throughout my working years. I could feel my body tighten as I wondered how well I was doing.

Nicole setting the levels on the implant headset

Progress or not?  I’ve been working hard with the cochlear implant. I wanted progress very badly.

Tools of the trade

When it came time for evaluation, the audiologist gave no facial hints. I was tense and nervous. She slowly and clearly told Marilyn and me that my progress was substantial with major improvements in all the areas tested. Some of the improvement was huge, some more moderate. But everything was better.

I smiled inwardly which turned into a broad smile that could have lit the room.

Filling in the forms

My cochlear implant and the hearing aid in my left ear were adjusted to give me more audio on 5 levels. She expected I would probably not want (or need) the strongest (loudest) level, but it was there, just in case. The new “bottom” level was the top of my previous levels. Go, Garry!

Setting the new levels on gear

In the coming weeks and months, Marilyn and I will be attending several large events where there will be many people, lots of background noise including live music — the dread of anyone who has trouble dealing with background noise. These events will be powerful tests for my implant.

More tests

What’s more, these are exactly the events that I dreaded before the cochlear implant surgery.

Now, I am eagerly looking forward to them.

Hallelujah! Time to celebrate!

UNAWARE OF THE CONTRAST – Marilyn Armstrong

It’s amazing how subtle changes to your body can be. The best way I can make sense of it is to contrast the way I feel now compared to how I felt this time last year.

It’s an enormous difference. I’m constantly exhausted and I barely have enough energy to get up from the sofa and get to the bathroom, which is barely a dozen feet away. And all of this because I’m anemic and I can’t take iron pills. They make me sick. I should have known that because recurring anemia has been part of my life since I was a teenager.

The problem is, it didn’t make a big difference in my life when I was a lot younger. I had a natural amount of energy which these days, I lack. So I’ve been dragging myself around for a few months, but I realize that anemia in a person nearly 72 is not a minor anemia in a 22-year old. It’s bad for my heart which has had quite enough to put up with and it makes things that hurt even more painful.

So instead of taking pills, I’m going to have to arrange for intravenous iron. The good news? Probably just a few infusions and it will all be set right. The bad news? Do I have a vein anywhere that will accept the needle?


You know they’re nuthatches because their natural position is upside down.


I’ve always had difficult veins, which my unlucky granddaughter has inherited. For her, the very idea of an intravenous anything is so terrifying she’s ready to leave town. I don’t have the choice of running for cover, so I hope that they have someone who is really good with a needle and can find a vein — NOT in my hand or feet, thank you — that will accept an infusion. The last few times, they wound up using my throat and that was not fun at all. I’m hoping it won’t come to that.

So, I made a doctor’s appointment. I’m hoping that if I get over this hoop, that maybe I will feel more like a human and less like a sack of rocks. You kind of know when the first thing your husband asks you is “How are you?” that you haven’t been looking well. I do not feel lovely.

I made an appointment for tomorrow and we will sort it out. I don’t have to be happy about it, though.

RDP Thursday – UNAWARE

FOWC with Fandango — Contrast