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

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.

PLEASE, JUST MAKE ME FEEL BETTER – Marilyn Armstrong

FOWC with Fandango — Health

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

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

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


“I just want to feel better.”

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

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

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

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

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


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

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

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

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

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

A PAIN IN THE NECK

When Pain Decides, by Rich Paschall


There are many powerful motivators in life.  Money is at the top of some lists.  It certainly seems to be the main motivation for many leaders of corporations and governments.  Doing good, rather than doing evil or even just doing nothing, inspires people to do good works that will benefit their community and their world, however large that may be.  Fear can also be a motivator to get you to do things or to avoid people, places, things .  What motivates you to act in a certain way?

Pain is clearly a strong motivator.  People will generally avoid things that cause pain.  At least, they will when they know better.  My earliest memory involves broken glass.  I was barely more than a toddler when glass broke on the floor and my father and grandfather were yelling at me to stay put.  This of course frightened me and I ran across the floor to one of them.  I was barefoot at the time.  The next thing I knew one of them was carrying me down to the doctor’s office, conveniently on the same street.  The other hurried along side.  I guess the good doctor picked a little glass out of me and sent me home.  I knew never to run through broken glass again, at least not barefoot.

Sometimes we learn about pain the hard way.  The oven is hot. The radiator is hot.  The campfire is hot.  Heavy objects will hurt if they fall on us.  Knives will cut.  Scissors will cut.  Razor blades are for an adult to carefully handle.  Falling off your bike is bad. Falling down stairs is bad.  Falling on the ice is bad.  Being hit by a car…  Well, some things are very bad.

All of these tragedies and possible tragedies motivate us to lead a safer life.  No matter how well our parents try to “child-proof” the house, there are still painful lessons to be learned.  From them, we discover how to stay safe and avoid pain.

Sometimes pain may keep you off your bike, off the ski slope or off the golf course.  The aches and pains of age may stop you from doing things you used to love.  You may see the roller coaster at Great America, but decide your back will not take such a jolt.  A sore knee may keep you from hiking or a headache may keep you out of the sun.  You may be motivated to keep away from many activities.

No matter how carefully you live your life, however, other factors may intrude that cause pain and painful decisions.   A whole encyclopedia of maladies may force you into the doctor’s office in search of relief from pain.  Have you ever heard yourself ask the doctor to give you something for the pain?

There are plenty of “some things” to be had.  I know. I have many of them on hand.

If you consider the health of your family and friends over the years, you may see a lot of pain and suffering.  Sometimes people’s lives become an exercise in treating pain.  Some doctors are wary of treating the pain, which is a symptom, rather than the problem.  Getting something for the pain and going home is not often a good route to take.

In  the middle of last year, neck pain and arm and shoulder numbness caused me to go to the doctor.  My manager in the freight forwarding world was concerned I was having a stroke.  I assured him I was just having a lot of pain.  A stroke will cause numbness on one side and usually a severe headache as well.  Know the warning signs of stroke.  It is a different kind of pain.

Without going through all of the steps and studies along the way, I can say I ended up at a pain doctor who realized there was more than a pain in the neck.  He treated that pain but also caused for a lower back problem to be found.  Rather than deal with the neck problem, I had an operation on the lower back which alleviated pain and numbness, but not the original problem.

Why did I avoid the original problem?  Because the back surgery sounded like it could be solved with a minimally invasive procedure while the neck surgery sounded scary and painful.  It was pain that caused me to opt for one surgery over what was actually a bigger problem.

While I was looking into options for the neck, I finally picked a neurosurgeon and scheduled surgery.  Why would I let someone cut into my neck because of a couple herniated discs?  What motivates me to have the procedure I had been avoiding?

When I was much younger I had a procedure that caused for a spinal injection.  When I awoke, I found a weird feeling in the spine and numbness from the waist down.  It went away in a short time, but the back was sore and I swore then, I would never let anyone touch my spine again.  What happened to change that?  Pain.

The surgery I avoided became inevitable.  Pain made the decision for me.  It is time to go forward with an attempt to replace a couple herniated discs and put C5 back in place.  I absolutely do not want to do it.  A larger motivating factor came into play.

This will take me away from my computer for a day or two or three.  Hopefully I will be able to answers any comments in a timely fashion.  If not, I guess you will know what motivating factor kept me away from my appointed rounds.

DOMINANT THEME DU JOUR

So, it turns out, Garry’s ongoing “I don’t feel good” was getting worse. I schlepped him to the doctor.

What do you know? He’s allergic to Lisinopril — a blood pressure medication. Now he’s on a short run of Prednisone to bring down the swelling in his face and throat and probably all that interior stuff. Who’d have thought that was the problem? He’s been on this same medication for at least 20 years.

Our bodies are a moving target. Just because a medication has always worked, it doesn’t mean you can’t develop an allergy to it tomorrow. One day, I showed up allergic to penicillin — and this put me on the “NO NO” list for all related “cillins.” This can get quite complicated when I need antibiotics.

Allergy confirmed!

Getting Garry “doctored” was very much the central theme of the day. We actually forgot to do Bonnie’s eyes this morning, something that’s so much a part of our ritual I didn’t think it was possible to forget it.

On the plus side, our usual doctor was not in and Garry discovered the other doctor in the practice is a fan. Watched him for all those year, through all those Boston crises.

So his problem will be cured, he got a lot of attaboys, and it is just as well we didn’t go traveling this week. Go figure, right?

FAT CELLS: I HAVE A THEORY

Actually, this isn’t a new theory. It came to me back when I had lost more than 100 pounds. Since I was suddenly thin, I was wondered where all that fat had gone. I knew, from my very scanty reading of physics, that matter and energy are the same.

So if fat used to be matter, but it was no longer on my body, where had it gone?


Energy! My fat had become giant clouds of fat cells.


Those low-hanging clouds are really fat cells, waiting to adhere to your hips.

This is how it works. There you are, doing just fine. La di da, fa la la la la … Then you eat one tiny little sandwich and okay, maybe a sliver of pie — and suddenly, you are forty pounds heavier. You can’t figure out how that happened? You are sure some evil sorceress put a hex on you.

The truth? You walked into someone’s fat cell cloud. All those hyper-energized fat cells attacked your body and made you INSTANTLY FAT!

Watch out! The fat is coming!

It wasn’t what you ate. It wasn’t the lack of exercise. It wasn’t your failure to develop a warm and loving relationship with green vegetables and ground kale breakfast drinks (gag). IT WAS FAT CELL CLOUDS.

It explains everything! Doctors, please chat with the physicists. I’m sure I’ve got it right. We need to rethink the entire diet thing. We need to destroy those clouds of fat before they spring onto your hips!

DIDN’T MOST AMERICANS HAVE MEDICAL COVERAGE BEFORE OBAMACARE? REPEAL IS UP TODAY OR TOMORROW!

The HEALTH CARE REPEAL BILL is back. Again. Maybe you thought it was finished and were paying attention to other stuff? McConnell and his evil party are planning to vote on REPEAL tomorrow or Wednesday. I got this directly from Elizabeth Warren’s office a few minutes ago. This isn’t from an external news source. Straight from the Senate office, so if you thought you could relax, don’t.

Post your story! Anywhere. Everywhere. Now.


The original question on Quora was “didn’t a majority of Americans have medical coverage before Obamacare”?

I thought about the answer. This is one of those issues in which I had — still have — a gigantic personal stake. I’m one of those people who would never get insurance without laws forcing them to give it to me. Maybe a majority of working adults had medical coverage, but among those who were not — for whatever reason — working, mostly, they had nothing. This includes disabled people, old people, people injured and unable to return to work. And, of course, children.

We were among the group who no longer had medical insurance, although we’d had it before.

I was desperately ill. Massachusetts had not gotten its own medical care system yet and the U.S. had nothing, the situation to which it seems we will shortly return. I could be fixed, but no one would help me because I didn’t have insurance. I went from not well, to sicker, then even sicker. One day, I realized I was dying. For real. I was beyond sick. I felt as if the air was blowing through me and I was disappearing.

Someone told me about a doctor in Boston who might be interested. He was interested, but I had no insurance and no money. When it suddenly occurred to me that I really was dying, no kidding, I called the doctor. I said I was dying. He told me to come to the emergency room and he would take care of the rest. They took me in. I spent three weeks with a vitamin drip in my jugular vein trying to get me physically able for surgery. Then, he invented a surgery to fix me. It had never been done before and he warned me it might not work. I pointed out I had nothing to lose because I was going to die otherwise.

Anyway, after the surgery, my abdomen went septic and he had to call in the plastic surgery swat team. They performed another surgery, cutting out all the rotting skin on my abdomen and leaving me with a scar that looks like I was partially eaten by a shark. But I got better and a couple of weeks later, I went home. I only weighed 90 pounds and was warned that no matter how difficult it was, I had to eat. I needed to get back up to about 130 pounds. Which I did.

The hospital took care of the bill. I never paid for anything. Miracle number one.

Eventually I got Medicare — after finally getting disability. The process took almost four years. In between, I got cancer in both breasts and was fed a lot of poison and … then …

My heart failed. A lot of surgeries, later, I got more leases on life — and the hospital ate any expenses not covered by Medicare. They knew I couldn’t pay it. It is one of the things about dealing with large hospitals — they can manage catastrophes like me.

In the course of this period, Massachusetts got its own healthcare program and then there was Obamacare. By that time, I was already on Medicare.

I am alive. That I’m still breathing is amazing. This is just a brief overview — but before there was health care, if you weren’t absurdly lucky and just happened to have a brilliant doctor and a few top quality hospitals to lend you a hand, you would be dead. I could as easily be long gone by now.


Not having real health insurance is not politics: it is life or death.
It has nothing to do with how you vote. And as a reminder, the dead do not vote.

How did this stuff happen? How did we go from being good earners with high incomes to not having medical insurance and watching me slip from life to death?

I’m glad you asked.

I became too sick to work. My earlier job had fallen to bankruptcy. I was too ill to find new work. My husband had also stopped working. We had no money, no insurance, and I was dying. It is amazing how quickly a life can fall apart. It takes surprisingly little and ill-health is often where it begins. We thought we had enough — or soon would have enough — but when you are sick and uninsured, whatever money you put away disappears.

This is a “life accident.” You work. You’re doing fine. Your company goes bankrupt and you are not eligible for COBRA — assuming COBRA even exists. Some people lose jobs because they got old, or the company decides they will do better with younger, cheaper help. If you have a union, you might (at least) get some kind of payment to go with your pink slip. If not, you’re just old and unemployed and very unlikely to find equivalent — or any — employment. Because there aren’t that many companies looking to hire mature workers.

Your health insurance — assuming you had it — leaves when you leave and if your mate is part of your insurance, both of you are now without insurance. Sure, there are emergency rooms, but an ER won’t cure your cancer or repair your heart. If you have cancer and you do not have insurance, you are dead. Emergency rooms don’t take care of long-term illness. They might fix your broken leg — and send you the bill — but if you’ve got breast cancer? You’re done.

What kind of country are we building? What kind of world will this be if we have stripped the last hint of human kindness from our culture? What is wrong with compassion — even if it costs a little more? To me, this isn’t political. It’s humanity. It’s caring for others, including those you’ve never met.

That’s what compassion is.

MAKE ME FEEL BETTER

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

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

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

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

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

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

To me, it’s the only important thing.

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

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

She understands. She gets it.

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

I NEED TO FIGURE OUT HOW TO GET THROUGH VOICE MAIL

Of all the skills I never acquired, the ability to cut through the dreaded recorded message: “The staff are currently assisting other customers. Please hold on. We appreciate you patience,” is a major failure.

telephone hold

I would have more patience if I weren’t trying to reach my doctor’s office. Because I’m not feeling well. I figure I shouldn’t need an hour plus who-know-how-long to get a live person on the telephone.

waiting for

Then there’s the muzak. I know offices buy special music so they can leave their customers — in this case patients — on hold indefinitely. They count on the music to soothe the savage beast slowly boiling over at the other end of the line.

To me, it’s closer to fingernails on a blackboard. Each unmemorable phrase makes my blood pressure rise.

Customer Service waitingWhy am I calling? Because my doctor is an arrogant prick and I need a different doctor. ANY different doctor. I’m not that picky. I just want a doctor — or nurse practitioner — who won’t blow off my medical issues because he has decided — without reading my medical history — that I’m just an old, hypochondriac looking for drugs and attention.

This is a stunning leap of logic.

What gave him the clue that I’m nothing more than a crank?

Was it the bi-lateral mastectomy? The heart valve replacement or the implanted pacemaker? The emergency bariatric surgery? The spinal redesign and subsequent massive arthritic takeover? Does he think such procedures are performed to satisfy the morbid neuroses of one demented old bat?

Whatever his reasoning, it has to end. My trip to the oncologist a few days ago (he is one of the good ones), revealed I’m now seriously anemic. Been here before, but I’m back and shouldn’t be. Simple monitoring of blood vitamin levels and appropriate vitamins could easily have prevented this.

I haven’t been able to get this guy to even acknowledge there is anything to monitor, so I’ve been trying to figure out what I need to take to fix the problem. From information I found on the Internet.

insane doctor cartoon

Suddenly, in a blaze of clarity last night, I realized I have no way to know how much B-12 I need. I used to get monthly injections and I shouldn’t be self-medicating while my hair falls out and my skin dries up and tries to leave home without me.

It’s 10:29am and I’m still on hold. I have been on hold — off and on because I’ve called back several times — since 9am. I can tell by the clock on the computer.

waiting

I wonder which will run out first? The battery in my telephone or my patience?

Garry says I can’t give up, that this asshole is going to kill me.

The good news? It’s pouring outside. Finally, the rain has arrived. It was late, but this morning, when I got up, it was raining and since then, it has gone from raining moderately to a blinding downpour.

I sit here. Listen to soothing music and the recurring “The staff are currently assisting other customers. Please hold on. We appreciate you patience.” I think how all this water will seep into the aquifer. The well will fill with fresh water. I will be able to take a shower without fearing it’s my last.

There must be some magic formula that gets a person through the wall of electronic non-answering. I need to learn this skill. Soon. Today would be a good time. Before I got completely postal and rip out someone’s throat with what are left of my teeth.

I don’t believe for a single moment that they really appreciate my patience. But I’m such a cynic.

NORMAL SCHMORMAL AHBIGAZINT

Pace Oddity

If you could slow down an action that usually zooms by, or speed up an event that normally drags on, which would you choose, and why?


 THINGS I BROOD ON AND WOULD LIKE TO GET DONE ALREADY

That’ what my mother would have said. “Normal shmormal, as long as your healthy.” In Yiddish. Well, I’m not very healthy and neither was she, and I don’t see what that has to do with it anyhow. I never did.

These days, my mind is focused on water. As the autumn begins to pass and the temperatures drop, I fret. I’m not the only one, either. Everyone is bit peevish. We all have laundry. We want our showers back. And we are stuck, waiting, because there’s one guy and a lot of wells and we aren’t the worst one.

Manchaug Dam

I’m a natural-born worrier. I’ve gotten better with the years, but when stuff like this happens, I want to be done with it. Fixed, finished, finalized. I want to get on with the important worries: why my breastbone has failed to fuse and still makes a grinding noise when I move.

Is there anything that will make my hips work like real hips so I can stop climbing the stairs using the railing hand over hand like a spelunker. So I can brood on what’s going on with my cancer. Just past 3 years and all I know is I’m alive. I’d like to know I don’t have cancer, but apparently that’s unrealistic.

Survivor equals “So far so good — not dead yet.”Maybe that’s the way all life is, but when you have had cancer, you get labels. And they stick.

So please Dave, fix my well. Let’s get ready for winter. I need the well finished. I need the sidewalk back in place. I need snow tires on the PT Cruiser. I need some cortisone shots in my hips.

I need a good night’s sleep.

Speed up! Let’s get this show on the road, Mr. Dave the Well Guy.

Hey, breast bone? Heal, dammit! They said 6 months. Now it’s seven months, so they are saying eight months. Or who know? Ten? Forever? Let’s get moving on this healing thing. I hate the grinding noise my chest bones make. It’s icky and it hurts.

BRIEF STATEMENT ABOUT DOCTORS AND TYPES OF DOCTORS

Nice Doctors

First is my shrink. She doesn’t shrink me,but she tries to help me by finding drugs that will help me feel better. She knows she can’t cure what ails me — because so much ails me — but she’d like me to enjoy my life despite all the problems and to this end, she is dedicated. And I adore her.

My cardiologist who favors anything that will make me feel better, whether it’s medical marijuana or strolling through the park on a lovely autumn day. He tells me I’m doing great,  even though I’m not doing so great in some ways, but I’m always happier when I leave his office. He approves of any drug that won’t kill me but might make my days more enjoyable. Bless his heart.

Stern Physician

I need him, but he’s like the parent who enforces the rules. Nothing namby-pamby about him. He’s my age … maybe a little older. Not big on sympathy. He has that Marine Corps attitude: “This is your body, good or ill. Suck it up, do the best you can. There are no body swaps. Have another painkiller. Oh, and here’s the name of a pain specialist. She’s good with needles. Your breast bone will heal when it’s damned good and ready.” He is not gonna cry ME a river.

“You’re 67 and you’ve had massive, invasive, extremely serious surgery. They cut you open with a buzz saw not all that long ago. What are you thinking?” (That I’d be okay by now and could get back to a normal-ish life?)

So if we are going to put a “hurry up” on something (other than getting the well done) … can we make that breast bone heal already? Please????

If, by perchance, I have an unknown and extremely wealthy relative somewhere who is ready to slip that mortal coil — preferably one who has had a long, productive, happy life, I’d appreciate a rapid distribution on my inheritance. Because I really need a chair lift for the stairs, a carrier for the car to hold a couple of scooters for my baby and me to ride the high country (zooped up ones that will also do off-roading, please). An a well-designed yet economical four-wheel-drive vehicle to get us through the winter and not leave us stranded in the driveway.

WITH CATHARSIS, WE GIVE EGGROLL

Phew. This was cathartic.

Mom, I hear ya’. Normal Schmormal Ahbigazint. And this too shall past. **

Sooner would be better than later, so put a rush it, please. Not the passing. Just everything else.


 

ATTAR of NISHIPUR** “This too shall pass” (Persian: این نیز بگذرد‎, pronunciation:īn nīz bogzarad, Arabic: لا شيء يدوم‎ (“Nothing endures“), Hebrew: גם זה יעבור‎) is an adage indicating that all material conditions, positive or negative, are temporary. The phrase seems to have originated in the writings of the medieval Persian Sufi poets, and is often attached to a fable of a great king who is humbled by the simple words. Some versions of the fable, beginning with that of Attar of Nishapur, add the detail that the phrase is inscribed on a ring, which has the ability to make the happy man sad and the sad man happy. Jewish folklore often describes Solomon as giving or receiving the phrase. The adage and associated fable were popular in the first half of the 19th century, appearing in a collection of tales by the English poet Edward Fitzgerald and being employed in a speech by Abraham Lincoln before he became president.


Abū Ḥamīd bin Abū Bakr Ibrāhīm (c. 1145 – c. 1221;Persian: ابو حامد بن ابوبکر ابراهیم‎), better known by his pen-names Farīd ud-Dīn (فرید الدین) and ʿAṭṭār (عطار, “the perfumer”), was a Persian Muslim poet, theoretician ofSufism, and hagiographer from Nishapur who had an immense and lasting influence on Persian poetry andSufism.

I JUST WANT TO FEEL BETTER – A MANIFESTO

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

I hadn’t seen her since before all the heart surgery in March, so we had a bit of catching up to. We talked about me, her, life, getting older, Garry, drugs and how some things — like marijuana — just don’t do what they did when we were young.

And the importance of feeling better.

The garden in front of the clinic where my favorite doctor works

The garden in front of the clinic where my favorite doctor works

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

You really don’t care how.

Whatever it takes, whatever drugs, surgery, therapy, whatever. Just — make me feel better. I want a day without pain, without anxiety, without nausea. I want to feel normal or at least close. Whatever normal is. Because I am not sure I remember.

The problem is, doctors don’t see medical value in feeling better.

Feeling lousy isn’t a medical condition. And feeling better is not a definable goal for medical professionals. The doctor keeps telling you you’re fine … and you don’t feel fine. You are tired, in pain, crabby, unable to sleep. Nauseated. Exasperated. Fed up with everything.

Just two doctors — out of so many in my world — believe feeling better is a legitimate goal. One is my cardiologist and the other is my shrink. Technically, she is my psycho-pharmacologist, but shrink is easier to say. Her self-assigned task in this world is to help me feel better.

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

That she understands the concept  is nothing short of a miracle. So I’m going to keep her. Despite insurance.

I JUST WANT TO FEEL BETTER – A PERSONAL MANIFESTO – Weekly Writing Challenge

ADVENTURES IN HEALTH CARE OR LACK THEREOF

It snowed Wednesday. Just an icing but it prompted a lot of people who actually had to get their cars rolling first thing in the morning to say “This is a joke, right?” A New England joke. The day before, temps had been in the high 70s, I had turned the heat off, so Wednesday saw me and Garry huddled on the sofa in sweatshirts and blankets. Would the cold last long enough to justify revving up the oil burner? Or should we gut it out and shiver until more seasonal weather prevailed? Medicare-Payment-Methods-1024x768 Being so recently sliced and diced, I was not in fighting trim. By evening, I went for heat. Shivering was bad, but sneezing? Wow. That’s a killer. I’m still fighting the battle of no PCP. Technically, I’ve got one. I’ve just haven’t met him. Yet. I’ve got a date, May 2. Not so far away, but far enough. I hope this one’s a keeper.

In the meantime, I’m self-medicating everything including my blood pressure. I’m not doing anything crazy, mind you. I’m merely taking the BP meds I was taking before the surgery because I don’t have anyone to monitor me, no one to call or consult.  Other than the visiting nurses. They are wonderful and deserve medals.

Except they are all leaving because I’m doing so well. Ironies piled on ironies. My self-medication program is working. I’ve got my BP back into the “good” range from the “outta sight” levels of last week. Adventures in health care indeed. This is closer to adventures in lack of health care. How weird I’ve got medical coverage — good coverage — but no doctors. What a world, eh?

DOCTORS DON’T LISTEN – GARRY ARMSTRONG

One of the things I’ve discovered about blogging is you can say stuff that you might be reluctant or timid to share in normal conversation.

I’m talking about myself and Marilyn. About the medical profession and patients. Marilyn is an aggressive advocate. I’m passive. I usually try to be diplomatic, relying on the quiet, persuasive approach honed over 40 years as a TV news reporter. Marilyn’s learned you can’t always be pleasant or nice in dealing with the establishment. Be it doctors, lawyers, politicians, merchants or your affable cable company. Nice guys often finish last. Even worse, in the medical profession, their lives are often in jeopardy.

I’ve sometimes thought Marilyn was too judgmental with doctors, nurses, medical technicians, medical office managers or HMOs. Color me naïve and maybe stupid for all my years in the news media spotlight. The past dozen years have been almost a continuing nightmare for Marilyn who has been through myriad operations including at least two near death experiences resulting from one botched surgery. No “Law & Order” vindication in real life.

One of Marilyn’s big problems is pain management. She is in her second week of recovery from complex heart valve surgery. She’s in almost constant pain, 24/7. Mornings are kind of okay when she has bursts of energy and can do some writing. The rest of the day is downhill. She has limited pain relief options. Her intestinal system, after two gastric bypasses (one botched), is ultra sensitive to medications. Moreover, she has reached the limit of surgical fixes to her gastrointestinal tract. If she ulcerates again, it’s over.

Marilyn has been trying to explain this to her doctors. They don’t get it. I’ve been there and witnessed these conversations.

Most of the doctors who’ve seen Marilyn treat her as if she doesn’t know anything about her own body. Even after she explains the details of which medications work and which wreak havoc on her system, they merely nod as if she’s stupid or they know better — without so much as checking her records. They prescribe drugs Marilyn knows will make her sick, ignoring her protests.

We hoped today would be different. A first visit with a new primary care physician (the old ones’ network would not make a deal with Medicare or Medicaid, so all their poor or old patients are screwed). I intervened before the session began. I explained I’ve known Marilyn 50 years. I gave high or low lights of her past dozen years of medical hell. I explained the difficulty Marilyn has had communicating with doctors who’ve often been arrogant and dismissive. In essence, I was giving our new PCP a heads up if Marilyn appeared angry, hostile or anxious. I emphasized pain control was our major concern with Marilyn’s limited venue for such medications.

I thought I’d set things up to succeed. I was wrong! Marilyn’s worst fears were confirmed. Our new PCP said she was unable (unwilling, really) to prescribe Marilyn the medications she needs. “Not,” she said, “In my comfort zone.”

My passive take on the situation has dissolved into anger. I managed to retain my nice guy demeanor but if thoughts could kill, I would be in lockup right now. Somehow, Marilyn has reached inside and grabbed another chunk of fortitude to search for another doctor.

I have new admiration for my wife. I wish I still had the clout to help, to make things right. All I can do is be here, offering support that, maybe, tomorrow will be a better day.

The Bitter End – Radiolab

The Bitter End – Radiolab: Reblogged from Radiolab Podcast Articles

Doctor holding stethoscope

We turn to doctors to save our lives — to heal us, repair us, and keep us healthy. But when it comes to the critical question of what to do when death is at hand, there seems to be a gap between what we want doctors to do for us, and what doctors want done for themselves.

Producer Sean Cole introduces us to Joseph Gallo, a doctor and professor at Johns Hopkins University who discovered something striking about what doctors were not willing to do to save their own lives. As part of the decades-long Johns Hopkins Precursors Study, Gallo found himself asking the study’s aging doctor-subjects questions about death. Their answers, it turns out, don’t sync up with the answers most of us give.

Ken Murray, a doctor who’s written several articles about how doctors think about death, explains that there’s a huge gap between what patients expect from life-saving interventions (such as CPR, ventilation, and feeding tubes), and what doctors think of these very same procedures.

Jad attempts to bridge the gap with a difficult conversation — he asks his father, a doctor, why he’s made the decisions he has about his own end-of-life care… and whether it was different when he had to answer the same questions for his father and mother.

A chart of doctor responses from the Precursors Study:

Preferences of physician-participants for treatment given a scenario of irreversible brain injury without terminal illness. Percentage of physicians shown on the vertical axis. For cardiopulmonary resuscitation (CPR), surgery, and invasive diagnostic testing, no choice for a trial of treatment was given. Data from the Johns Hopkins Precursors Study, 1998. Courtesy of Joseph Gallo, “Life-Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?”

In the well spoken words of one of the many pe0ple who responded to this podcast:

Patrick Mathieu from Canada

For the past 10 years, I have been speaking to groups about the value of embracing your mortality. I wrote a book on the topic and was featured in a feature-length documentary film and interviewed on TV and radio (including an hour-long interview with Dr. Oz on Oprah & Friends.

I have always been amazed at Western society‘s ability to pretend that death doesn’t exist. We think it’s perfectly reasonable to make plans for what we’ll do with our lottery winnings, or to save for a retirement that we *might* get to enjoy, but no one wants to talk about the one thing in life that is absolutely certain. When we make the conscious decision to face death on OUR terms, we are able to access a tremendous amount of personal power. Thanks to Radiolab for this fantastic episode!

 

Don’t Go Breaking my Heart…

Not only does this include information that many of us need for ourselves or someone we care about, but Mike’s comments on the National Health Service are typical of comments I’ve heart from many Brits, Canadians, and Aussies too. You may think you don’t need it, but one day, you WILL need it and if you don’t have it, it might just cost your life. Consider that before you vote in November!

Mikes Film Talk

So come to find out, the hard part of my surgery was the bypass bit. Hard to perform and harder to recover from. When we arrived at Basildon Hospital and the local experts explained what would happen and how long it would take, I can remember very little. A general air of Bonhomie and an industrious feel about the whole thing was what I remember best.

With my daughter’s help, I can reconstruct the series of events. It would take at least the two of us anyway. Meg was in a bit of shock and I was so stoned from the pain medication that I made Keith Richards‘ look tee-total.

The first decision was easy. From my view point it was, “Blah, blah, blocked artery, blah blah, Stents, blah, blah, easy surgery.” It was all very relaxed and ‘Pip Pip cheerio old man’ we’ll be done in time…

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