Health

WHEN BONES DON’T KNIT – Marilyn Armstrong

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Yesterday morning, I dropped the mouse for the computer in the bedroom. I reached down to pick it up and a pain shot through my chest, down my arm and I yelped.

I had a lot of heart surgery more than five years ago. Most of it has healed well. The thing that hasn’t healed properly is my breastbone. Surgeons split it in half when they work on your heart. Normally, it will take between 2 and 6 months to knit into a single unit. Mine didn’t knit, so it’s still a two-piece breastbone. Healed, but not knitted and held together with steel wire. Apparently, no medical technology exists that can convince a bone to knit if it doesn’t want to.

Typically, this is a problem on joints that cannot be immobilized — ribs, breastbone, shoulders, spine. And, I should mention that when one of these is broken, you discover that every single other thing in your body is connected to it. So it has been for the past two days. Moving really hurts. But only at certain angles while using my right arm.

I’m a rightie. Of course.

It seems a little better today than yesterday, but it’s still crunching with each breath I take. I can hear it through my inner ear. Creepy.

Every doctor I talked to assured me — energetically — that it would heal in three months. When after three months, it hadn’t healed, they said “Definitely by six months.”

When more than a year had passed, they shrugged, pointed out that there’s nothing they know of that will make a bone knit if it doesn’t feel like knitting. Nope. No glue. The only thing they could do is open me up and rewire me. “Why, ” I asked, “Would that improve the quality of my life?”

My doctor — my personal physician — shrugged. “It wouldn’t. Personally, I wouldn’t do it.”

It’s more than five years later, heading rapidly into six years. My chest still crunches when I breathe and sometimes pops out of place when I lift something with my right arm. It sometimes makes breathing pretty unpleasant and my right shoulder doesn’t like me anymore.

Meanwhile, I’m held together by some pretty tough steel wire. Doctors always seem so sure what will happen after the surgery. Except in my experience and for a lot of other people, it doesn’t necessarily go that way. Nerves don’t “calm down.” Bones don’t knit. You are left with a lot of weird problems you were sure were going to be gone. If at least the major part of the surgery worked, then I suppose it’s better than where you were at the start. I always want to trust my doctors because they mean well, but they aren’t me. So these days, I understand just because they believed it when they said it doesn’t mean it will happen that way.

THE END OF MIDDLE EARTH – Marilyn Armstrong

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I don’t know how many times I’ve read these books. I know the first time was in 1967. I read it in the hospital after my spine was fused and after I decided not to die. I was in the hospital for five months and not allowed out of bed at all for any reason. That is a lot of time in bed and after getting home, it was a very long recovery.

It was more than a year before all the plaster and braces were removed and months more before I could stand upright for more than a few minutes at a time. But I was young and after a while, I was as normal as I would ever get. I had always been a voracious reader, but I had never read any science fiction. By the time I got out of the hospital, I had read every sci-fi book anyone could find for me, as well as Lord of the Rings. Twice. You have to read it twice. It takes that long to absorb it. Really, it takes even more readings than that. There’s so much to it. Moreover, each time you read it, it means something different than it did the time before.

I had crates of books to take home with me. I think I left most of them with the hospital. TV wasn’t very good back then and a lot of people needed something to read.

As I am now in the middle of “The Two Towers, ” deep in the syntax of J.R.R. Tolkien as the peoples of Middle Earth fight the encroaching darkness.

Speaking of branches, the Ents have taken a stand against Saruman. This is one of my favorite parts of the books and as far as I am concerned, I live amongst my Ents. I often talk to my trees because if they are Entish, they are listening.

Gandalf

I’ve passed the battle of Helm’s Deep when Theoden asks Gandalf if they can get back to the life they knew before all this ugliness. Gandalf says no because evil leaves traces. You fight it, but even if you win, remnants of that evil are always with you.

“But what about the peoples of Middle Earth? Will we all vanish?”

Gandalf says “Perhaps. Sometimes that’s the price we pay.” This isn’t literally what they said, but close enough.

These days, I wonder if all the people of modern earth will vanish too and that will be the price we pay. I can’t say we don’t deserve it. As a species, we’ve done terrible things to our earth.  We have a long, hard road ahead to fix it, which I sure do hope we do soon.

Will the evil of these days cause us to vanish? I have to admit, I never imagined I was living in evil times. I knew there were bad people — far too many bad people — but I thought most of us were basically decent people, good people. That our government would always stand up for us ahead of their personal agendas. And yet, here we are.

I still hope it somehow gets better and I really hope that Australia stops burning and the sea recovers. That Autumn returns and the seasons take their rightful place as the world rolls around the sun.

ONCE IN A LIFETIME – Marilyn Armstrong

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I don’t envy much. I’ve never needed the biggest house or the fastest car. Fashion doesn’t tempt me and success for me has always meant having enough. Spare would be nice, but enough will do. I don’t need popularity. A few good friends and some companionable other acquaintances are just fine.

Photo: Garry Armstrong

But you, over there? Yes, you. Young person, with your flexible body and the spring in your step. I bet you can sleep a whole night without having to take “something for the pain.” I bet you still have all your original parts too. No silicone implants or valves from other creatures. That must be really great. A spine that isn’t encrusted by calcification. A digestive system that will handle whatever you throw into it … and at your age, probably that’s all sorts of weird stuff. I hope you get over that. Stomachs are important. They don’t stay tolerant forever.

And feet! Oh, how glorious! You can run, jump, walk. Your eyes are clear and bright and you can focus your camera without special glasses. How delightful. I remember when I could do that.

It’s not envy. That would imply you’ve got something I want to take from you. It’s just that you are young and healthy. Your beauty is in your vitality and the joy I see you take in the simple acts of daily life. It’s not envy. It’s more wanting to turn back my own clock. Oh, what I’d give for a single day of being completely healthy and pain-free.

On the horse

I hope you treasure what you have. I didn’t realize how much it would change and how quickly it would happen. I never expected to be what I am now. In my imagined future, I was just as you are now, but with a little gray in my hair. Otherwise, I’d be perhaps a bit slower. I want a day as I was so I can treasure it and remember how it feels to walk with a spring in my step, eat an ice-cream, run across the grass, ride a horse.

Treasure what you have, youngsters. It’s worth more than gold. If it goes away, no earthly treasure can buy it back. Take care of yourself. Hoard your riches. You’ll need them on the road ahead.

LOSING EVERYTHING – Marilyn Armstrong

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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.

A BIT OF ADVICE ON SURVIVING YOUR MEDICAL SYSTEM – Marilyn Armstrong

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I’m alive for two major reasons:

  1. Because I didn’t take a lot of advice I was given. I had been misdiagnosed and had some bad doctors.
  2. Having learned my lessons the hard way, I did my homework and sought out the best doctors for whatever needed to be done.

In earlier surgeries, I tried to make life easier for people to visit me, including a working husband. Now, I find the best, most respected surgeon … even if he or she is a long drive from home. It’s my life on the line.

Dealing with breast cancer in both breasts — two unrelated tumors — and ultimately getting Boston’s best surgeon and plastic (rebuilding) surgeon was complicated, but I found a doctor who was a friend of Garry’s brother (who lives in Minnesota, but the doctor lived in Boston). The “local” surgeon had 30 surgeries and told me what I was going to do. No choice. She believed she already knew what I needed.

I spent a month finding someone with hundreds of hours who was head of the women’s surgery unit in Boston. It was a very nerve-wracking month hoping cancer wouldn’t grow much while I sought the best doctors I could find.

There is a lot of advice I wish I had gotten but didn’t. Instead, I got some excellent advice from myself.

The most critical information I can give you is to make sure you are using the best doctors and hospitals. Local doctors may be able to set a broken leg, but for anything more complicated, they might kill you if you let them.

I took my own advice which is how come I’m here to tell the tale. I’m pretty sure if I hadn’t been my most powerful advocate, I’d be an ex-blogger.

This is my best advice. 

Life is unexpected. Shit happens. Cancer, heart issues, diabetes, arthritis. You name it, we get it. No matter how well you take care of yourself, you will at some point require medical care, maybe surgery, maybe other stuff.

Regardless of convenience, understanding the quality of the medical facilities within driving distance — even extended driving distance — are critical to surviving.

Do the research. Find out what available medical facilities and associated doctors and surgeons and support services are reachable. If you have to drive a considerable distance to obtain the best services and people, do it. Survival trumps convenience.

Your life is on the line. I’ve been there, done that, and lived to tell the story. It is absolutely worth it. You are worth it.

STUPID IS THE NEW NORMAL – Marilyn Armstrong

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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.

WHAT A DAY FOR NEWS JUNKIES! — Marilyn Armstrong

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I admit it. By the end of about six hours of impeachment testimony, I knew I’d never survive the Democratic debate. Also, Garry said he’d leave home if I didn’t change the channel — which I was intending to do anyway — but he supplied the final push. I just handed him the remote and said: “Go at it!”

I’m pretty sure that even the anchors were exhausted by then. There’s only so much bombshell testimony (Was it bombshell testimony? I no longer know what that means) anybody can take. And I missed the beginning — what I gather was the really hot testimony, but they talked about it constantly, so I really didn’t miss anything.

Is this enough?

But now, it was post-dinner and the idea of watching however many people are running for president on the Democratic ticket snipe at each other was over the top. I need a very long night’s sleep before I reconnect.

And since they delayed the debate, bet we’ll catch the last hour of it anyway.

I do not know how anyone remembers anything on these shows. I can’t even remember the names of the senators or testifiers. Moreover, when someone is going to drop a bombshell, that is when I have to go to the bathroom.

Carry on, America!

AN AWFUL LOT OF POSTS BUT WHO REMEMBERS THEM? — Marilyn Armstrong

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9,947 published posts. I know that’s not quite 10,000 but it’s close.

Now, the minuses:

Tom: 400
Ellin: 525
Rich: 1,000
Garry: 1.000

So of the 10,000 posts, about 3.000 were written by other authors and probably another few hundred were re-blogs, so call it 4,000 written by other authors or re-blogs. I’ve probably written about 6,000 posts of my own. That includes most memories of childhood that were not published in my book … or are parts of the book or rewrites of chapters of the book.

Today’s statistics

About half of my posts were photographs, though even there, I tend to include writing even when the majority of the post is made up of photographs. But not always. It depends on how tired I am when I put the post together. And how many pictures I have.

So let’s say between 4,000 and 5,000 posts were exclusively mine. Still a lot of writing. Strangely, I wrote a lot more than that during my professional writing life. News writing, advertising, and documentation included thousands of pages and a mountain of research. I don’t remember how many books I wrote or how many kinds of software I wrote about. Or for that matter, what subject matter was involved.

I do not know if this is related, but for the last few months, I’ve been terribly tired. Aches and pains in many or most of my joints. Even my fingers, arms, shoulders, and occasionally my neck. If I don’t take pain drugs, I can’t stand up. Actually, it’s my inability to stand that’s my clue that I haven’t taken my medicine. I try to stand up and I fall back down.

“Oh, right,” I think. “I guess it’s medication time.”

I recently had a major three-day checkup on my heart. All things considered, my heart is doing very well, especially in view of all the surgery it has undergone. The implanted valves are working. The ventricles are pumping enough to keep the correct number of red blood cells flowing through veins and arteries. Whatever is wrong, it’s not my heart. So, whatever is going on is probably not lethal … at least not yet.

The neurology department did a major checkup on my brain (such as it is) and proved that (1) I have a brain so it’s not just a rumor, and (2) it’s more or less normal, at least neurologically. I’m not demented. I don’t have Alzheimer’s, or any sign of a brain tumor.

In fact, having changed medication for my spine, my headaches have almost entirely gone away. Proving my point that they should stop looking at each little thing and start looking at my entire self. I’m pretty sure they might find more connections.

To quote a song, “Dem Bones“:

Dem bones, dem bones, dem dry bones,
Dem bones, dem bones, dem dry bones,
Dem bones, dem bones, dem dry bones,
Now shake dem skeleton bones!

The toe bone’s connected to the foot bone,
The foot bone’s connected to the ankle bone,
The ankle bone’s connected to the leg bone,
Now shake dem skeleton bones!

The leg bone’s connected to the knee bone,
The knee bone’s connected to the thigh bone,
The thigh bone’s connected to the hip bone,
Now shake dem skeleton bones!

Dem bones, dem bones, dem dry bones,
Dem bones, dem bones, dem dry bones,
Dem bones, dem bones, dem dry bones,
Now shake dem skeleton bones!

The hip bone’s connected to the backbone
The back bone’s connected to the neck bone,
The neck bone’s connected to the head bone,
Now shake dem skeleton bones!

The finger bone’s connected to the hand bone,
The hand bone’s connected to the arm bone,
The arm bone’s connected to the shoulder bone,
Now shake dem skeleton bones!

Dem bones, dem bones gonna walk around
Dem bones, dem bones, gonna walk around
Dem bones, dem bones, gonna walk around
Now shake dem skeleton bones!

This is especially relevant to me because my spine seems to be the source of most my problems, not counting my heart, my missing stomach, and ye olde cancer.  So my good doctor sent me directly to the lab. I went to the one at Dana-Farber because they are much faster than the hospital and there’s a guy there who can ALWAYS find a vein. In ONE shot.

Meanwhile, I should be figuring out what I’m going to write for tomorrow, but surprisingly, that was not what I was thinking about. I was wondering what, if anything, the test would find. If they found something, what might it be? If they don’t find something, there’s simply got to be a reason why I feel this way. I never want to do anything or go anywhere. I’m too achy and tired. I don’t even want to talk on the phone.  I felt less tired after major surgery than I do these days, so something has to be going on. I would hope this isn’t a preview of the rest of my life!

So I didn’t get new pictures of my newly opened Christmas Cactus flowers because by the time we got home from the doctor, laboratory, and grocery store, it was dark. I’ll take pictures tomorrow.

Note that there are any number of versions of the words to “Dem Bones.” In case you find another version and the words are not quite the same.

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

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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.

NCIS AND MY PACEMAKER – Marilyn Armstrong

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EPISODE: Need to Know (2012)

Alan Katzenbach, a lawyer, waits for Gibbs with his client, a chief petty officer named Leland Wiley. Wiley was busted for drugs and wants to trade his info — which he says is about national security.

It concerns Agah Bayar, the arms dealer. Gibbs is interested. Wiley comes over to talk, but grabs his heart and drops to the ground.

ncis-need-to-know

Gibbs comes for the update from Ducky. Turns out, Wiley had top security clearance and his workstation is locked down. They haven’t been able to connect him to Bayar yet.

Abby calls Gibbs to the lab. She tells him Wiley’s pacemaker was linked into a computer to monitor it. Someone hacked in and jacked his heart rate up to 400 beats per minute.

“Somebody murdered Wiley by remote control,” she says.

What does this have to do with me?

Well, glad you asked. This episode so intrigued the heart surgery team at Beth Israel Deaconess in Boston (where I had all that heart surgery in March 2014), that they decided to find out if it really could be done. One of the people that performed the experiment was my surgeon.

They did it. My surgeon did point out as far as they could tell, to actually hack a pacemaker you had to be no more than a couple of feet from it. Nonetheless, they made the manufacturer change the programming.

In theory, nobody can hack my pacemaker.

I find this comforting. Garry finds it disturbing and I suppose I can see where he’s coming from. He doesn’t like thinking about the mechanical and electronic stuff that keeps me alive. It would creep me out too, but I’m a bit of a geek.

RBB-pacemaker

I find the technology sufficiently interesting to overcome its inherent creepiness. It is creepy. However, it doesn’t matter. No matter how I feel about it, I’ve got this thing in my chest. It keeps my heart beating. If my heart would beat on its own, I wouldn’t need a pacemaker.

In the beginning, they used to stop my heart will beat without it. My heart stops beating. Talk about creepy. It is a very unpleasant — and indescribable — sensation.

The blue tooth remote functions still work. They are (in theory) more secure than they were a couple of years ago before the NCIS episode aired and the guys got curious about it. Remote functionality is important. After all, I might need a tune-up. Blue tooth lets my doctor access my pacemaker from … how far? I don’t actually know. A considerable distance, whatever that is.

Garry — again — doesn’t want to know about it. I pointed out if someone murders me, this is potentially important evidence. He would still rather not think about it.

So there we are. Too creepy?

I can feel my pacemaker. It sits on my left shoulder. The outline is visible. I can feel the wires, the connections through my skin. I find it impossible to ignore. I might as well find it interesting. It’s part of me, after all.

And no matter what, I will always have that Pacemaker because, after all those tests, my heart absolutely will not beat without it.

CAN YOU MAKE THAT LOUDER? … WHAT? – Marilyn Armstrong

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FOWC with Fandango — Volume

In a household where Garry recently underwent surgery for his hearing, we also now have two deaf Scotties. Bonnie is almost entirely deaf and Gibbs can hear, but you have to talk louder. Yelling works, too.

Now that Garry can hear, he was complaining the TV was too loud while I could barely hear it. I suggested, finally, that maybe he could turn down his hearing aids from “as loud as possible” to “loud enough.”

I don’t think he had ever turned down his hearing aids in his entire life. That this was something he could do which would make all the “too loud” stuff more comfortable. It was an idea that hadn’t occurred to him because as the years went on, the issue was always “how loud can I make it?”

Now, since (assuming he is wearing his aids), we both hear at about the same level — more or less — his batteries last longer and you can’t hear our television in the next county.

No one makes hearing aids for dogs. Or eyeglasses. Because not only is Bonnie deaf, she also doesn’t see much anymore and she is just a wee bit confused. She loses track of where she is and forgets to come inside once outside. She will stand for hours in the doggie door with her butt outside and her head and front legs in the hallway.

You can’t call her in because she can’t hear, so Garry spends a lot of time going downstairs and moving her around. She weighs about as much as two cinder blocks, so hauling her is not for the faint of heart.

Bonnie still has good days. When she doesn’t have good days anymore, I am sure we’ll know it. Meanwhile, having two out of three dogs who can’t hear you calling them is surprisingly inconvenient. They also bark more because they can’t hear when they talk softly.

DON’T READ MEDICAL ADVERTISEMENTS ON THE INTERNET – Marilyn Armstrong

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Every now and then, I get lured into reading some advertisement on a news item. This one was “The Four Worst BP Medications.”

Now, I always knew that one of them was funky because it did weird things to me and I stopped taking it. When my doctor said I should, I said “No, I shouldn’t,” and I stopped. Garry turned out to be highly allergic to it. After he stopped taking it, he stopped needing any blood pressure medication. He’s normal and doesn’t take any medications.

I’m a different story. And that was one of the really bad things about the article. First, it wasn’t written by a doctor. Okay, she is a nutritionist and specializes in Asian medicine … but she’s not an M.D. or even a nurse.

She goes under the assumption that all blood pressure issues are the same and they most assuredly are not. Garry briefly had high blood pressure after he stopped working and quit drinking. It took his body a while to adapt to the changes, and then he went back to normal.

My problem is a (probably) a genetic version of hypertrophic cardiomyopathy. It’s not a reaction to stress, but a reaction to a malformed heart that apparently I had from when I was born. It didn’t “do” anything to me until much later in life and might well have been triggered by the drugs I took for breast cancer. You have to make choices. You know the drugs for cancer are powerful and no doubt causes problems in other parts, but the alternative is death. So you deal with it.

Some people are born with my heart issue and live with it. It never seems to cause them any problems.  Maybe without the other medications, it would have gone that way for me too … but it didn’t.

A special diet won’t cure it. Telling people that a special diet can cure all blood pressure problems is the kind of thing that kills people. Very few non-medically trained people have any idea what causes high blood pressure. Most people don’t know anything about how their hearts work.

I’m sure the right diet can help some people, but we aren’t all the same. When you’ve got implanted valves, a Pacemaker on which you depend 100% to have any heartbeat, and thickened heart walls that won’t change, you’re stuck using the best drugs available. Moreover, you can’t cure every heart problem. Some things are chronic and the best you can do it control them. Carefully, cautiously.

I’m pretty sure that it was advertisements like this one that got so many moronic parents to stop vaccinating their children. If “natural immunity” were all that common, we’d never had needed vaccination in the first place. We’d never have had the Black Plague, cholera, whooping cough, polio, or smallpox. And thanks to our overall ignorance and faith in whatever is posted on the Internet, we have most of these things back in our world, even though we thought we’d cured them.

The pressure in the arteries increases when the heart beats and decreases while it is resting.

So are these people trying to save us or helping to kill us off? What do you think?

Oddly enough, this was also the subject of Samantha Bee’s show yesterday. It wasn’t a brand new show — maybe a week or so old — but what she said was exactly what I said. People die from these ads and while there are laws against them, there aren’t enough humans to monitor all the ads on the Internet. They rely on us — you and me — to report these false and/or insufficient advertisements.

Consider this a warning. I tried to find the ad that triggered this post and I couldn’t find it. The advertisements rotate on the Internet, so when you see something and it needs to be reported, write the information down. I’m not sure to whom you are supposed to report it. It’s one of the federal agencies, but which one? When I have a chance, I’ll try to track it down.

In the meantime, if you read it on the Internet and you have no other source of information, DO NOT follow it. Some of it may be okay, but much of it is rubbish or much worse than that.

WHOLE BODY HEALTH: I KNEW IT! – Marilyn Armstrong

/ Marilyn Armstrong / 23 Comments

I was sure that the damage to my heart was related to the drugs they gave me for cancer which had been dealt with just four years earlier.

Tonight, on CBS News, they are finding a direct link between breast cancer and cardiomyopathy. The wrong chemo, an incorrect amount of radiation, the wrong drugs and what has kept them from making the connection before was that the heart damage often doesn’t show up for years following cancer … as long as a decade. My time was 4 years.

I had been saying to other people I know who are having heart issues … specifically myopathy … involving damaged valves and thickened ventricle walls which make pumping more (and more) inefficient who also — earlier — had cancer. Asking them if they think the treatment they got for cancer may have been the starting point for their heart issues. The answer is a long pause and “I don’t know. I always wonder about that.”

I have always said that the problem is that we are not pieces that you put together like a jigsaw puzzle. Everything is connected to everything else. I’m sure of it and no, I don’t have statistics to prove it. It takes dozens of years for these stats to finally be proven, but you know. You are just sure, but you’re not a medical professional and you don’t have the facilities to run the tests.

I did put the idea to my oncologist and all three of my cardiologists. While no one would confirm my feeling that these issues were not separated, they were also unwilling to tell me “no way, can’t happen.” Because they see how many people who have previously had cancer show up with cardiomyopathy. You don’t necessarily need years of testing to spot a trend.

Meanwhile, as more of us sense the increasing tendency of the medical community to use smaller specialization, the rest of us are sensing this approach is inconsistent with reality as we feel it.

I have been saying for a long time that there aren’t a lot of things wrong with me. There’s one thing and all these other issues are merely a part of a much bigger picture.

I can’t prove it, but I believe it. Doctors need to look at us as a unit. They need to look at all of our working parts. Not just look at our hips without making sure the spine is functioning. To not look at one’s hands without understanding how the wrist is coping or for that matter, the shoulder and elbow.

It is incredibly frustrating to know in your gut that there’s something important happening in your body, but no one is LOOKING at your whole body.

LOCAL NEWS FROM UXBRIDGE! – Marilyn Armstrong

/ Marilyn Armstrong / 8 Comments

So what have I been doing with myself? It certainly hasn’t been creative writing or photography. Mostly, it has been medical. Yesterday, I spent the day with the valve specialist and got the best news of the month. My heart is doing well, exceptionally well considering how bad it was when they worked on it five years ago.  It’s pumping, the valve is working like a new valve should. My bypass is open and moving and the pacemaker is working fine.

I wanted to know why I am so exhausted and he said whatever it is, it’s NOT your heart because that’s fine. Which brings me back to arthritis and my spine. It’s the same old story which, I guess, will never end. I frequently need to remind myself that no matter how miserable my busted spine and arthritis make me feel, they are not going to kill me. Also, the rest of the exhaustion probably is the fibromyalgia which is acting up for no known reason.

That’s the thing about fibro. There’s never a reason why it does what it does. There are no tests for it, no medication that works. You can’t even get a proper diagnosis because there isn’t any except the intuition of your doctor. There’s a definite link between arthritis and fibro … as well as rheumatoid arthritis and Lupus. But what the link is, exactly, no one knows.

It’s hard to diagnose and essentially impossible to treat. Nothing seems to make it better, but a lot of stuff can make it worse.

To keep myself functional, I’ve been trying to get more sleep, to not push myself when I’m already tired … and keep my feet up because the swelling in my feet and ankles is apparently a side-effect of one of the blood pressure medications I take. And no, I can’t change medications because these are working really well and when the meds are working, you don’t change them so your ankles will look better.

I did want to know if there was any chance I could get a more modern pacemaker. Mind you, they have not improved the functionality of the pacemaker. They are still exactly the same. What they are improving are the cases, making them thinner, non-magnetic and more appropriate for a woman’s body. Mine is so big I can feel the wires.

But changing pacemakers isn’t a minor thing. It’s a life-endangering issue, so unless it stops working, I keep this one. With this one — which is magnetic — I can’t have an MRI. I hope I don’t need one!

Despite the downers, most of the news is good. Mainly, my heart is working and my son is lucky he didn’t inherit it.

Other stuff? We’re now in the pricing new gutters for the house. The ones we have were improperly installed and have never worked. I’ve known that for more than 15 years, but it never occurred to me that a lot of the rot on the house is because of those non-working gutters.

LeafGuard wanted more than $7000 for new ones. $7000? Seriously?

The actual real-life prices are closer to $1100 to $1400, which I think we can manage. The back door will have to wait for warm weather to come around again, but if I can get the gutters up before winter, we might be saved from the giant ice dams of winter and a lot less rot!

Our house, some snow, and the fence …

If you live in a warm climate, you might not know that one of those big ice dams can weigh hundreds of pounds. If one clunks you on the head, you might not wake up. We had a friend die of a falling ice dam and he was born and raised around here, so he knew better. There’s something irresistible about trying to knock down those ice dams. It’s stupid and damages your roof, but people still do it.

I’m still trying to decide whether or not to change insurance providers. Tufts, the most popular (with good reason) has none of our doctors in its plan, so they are out. That leaves Blue Cross (which we have) or HarvardPilgrim. Both are good. Blue Cross is a little bit less money but offers fewer other “advantages. Harvard Pilgrim pays you for more of your tooth stuff and also for eyeglasses. Also, they actually will pay for inhalers.

But if I change plans, we get into trying to move my medical records. This ought not to be such a big deal, but because every hospital and medical group has its own plan and its own software and doesn’t mesh with anything else. When you’ve had a lot of surgery and transplants and all that stuff, you wind up with pounds of records. I have a crate full of my medical records which I keep in the car because who know who will want to see them? And there’s a lot of stuff NOT in there, too. All the information from when I lived in Israel and before that, in New York (before computers, too). So much stuff, I don’t remember a lot of it.

I’m thinking about it. Not an easy decision.

Meanwhile …

On one side of our loveseat, there are three tables. One holds a very small lamp that’s almost always on. The middle one used to be part of my bedroom set, but moved to the living room when it didn’t fit in the bedroom. It’s really ugly, one handle is missing, and it’s covered with bills that need paying, others that need filing, miscellaneous odds and ends for which I have no “home” –my extra eyeglasses and all the paperwork for medical plans I am fully intending to read. Any day now.

The final table is empty. That’s where I put my computer. I have a lapdesk to work on, but when I move the computer, that is its home. It’s an old piece and if I refinished it, it might actually be quite nice, but right now, it’s just old and worn out.

To find an affordable table that’s 48 inches long, about 16 or 17 inches deep and standard table height has turned out to be a challenge. I think I’ll wait until spring and do yard sales when everyone is trying to get rid of their old stuff.

For reasons I find incomprehensible, everyone is selling “retro” television platforms that are exactly the right size. The problem is, these were ugly when they first came out. I’m betting they’ve been warehoused since the mid-fifties and someone said: “Hey, let’s make some more money, call them “retro” and sell them now. Retro is very “in” these days, right?” They are truly unattractive.

If that’s my choice, what I’ve got is already unattractive — and I own it, so it’s free. If ugly is what is available, I guess that’s the way it’ll be. These are the days when I wish I had some carpentry skills. I could just build a box of the right size, throw a cover over it and VOILA!

Maybe a few wooden crates?

HUMMUS – Marilyn Armstrong

/ Marilyn Armstrong / 16 Comments

Feel like a nourishing meal without cooking? A lot of food from in and around the Mediterrean is some kind of salad, typically vegan.

How about humous? This is an Armenian recipe, but it’s delicious, easy, and all you need is a food processor, a few spoons and a knife to cut a lemon. If you don’t own one, you can get an inexpensive one for well under $20. I haven’t found that the expensive ones work any better. The only thing the expensive ones are is quieter.

HUMMUS – Armenian-Style

2 – 15-1/2 oz cans chickpeas (with water drained). You can also use the double-size can from Goya which equals the two smaller cans.

1 cup organic Tahina. The Yehuda brand (from Israel) which I find in my grocery store is not expensive and not gluey. In fact, you can use the whole can and save measuring.

1 fresh lemon, juice squeezed into the processor
¼ (or a little more) cup of olive oil
1-1/2 teaspoons ground cumin (if you like it hotter, use a little more)
1 heaping tablespoon chopped (or ground) garlic

salt to taste (about a teaspoon and a bit)
1 – 2 tablespoons of water. Use more if it’s too gloppy.

Hummus, Armenian-style (but really, it’s all the same)

Processor (it’s the least expensive one I’ve seen and it does a great job.

Process everything until it is as smooth as you like it. Taste, add anything you think it needs. If it’s too thick, add more water, a little at a time. You shouldn’t need much.

I add a couple of teaspoons of hot sauce (chipotle or other).

This makes a lot of hummus. I usually divide it into two containers, serve one and freeze the other.

Serve with pita (fresh if possible!) Nice with a side of fresh avocado, fresh lemon, and sliced fresh tomatoes. In Israel, it is usually served with a drizzle of olive oil, a shake of paprika, and a bit of fresh, chopped onion on top.

And hot sauce on the side. Over there, they use very hot sauce. I’m not that hearty. I’ll settle for milder Arizona-style!

IF THE TRAINS DERAIL, RAISE THE RATES – Marilyn Armstrong

/ Marilyn Armstrong / 19 Comments

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 …