MEMORIZING NORMAL … WHAT WAS THAT?

It was another trip to the oncologist. About 3 months ago, I was checking out my fake breasts and found something that hadn’t been there before. Now, before everyone starts to worry, don’t. I felt it in the right breast — like a hard, flat piece of scar tissue. It was located directly below the scar line on that breast. I didn’t find anything like it on the left breast. I did a little check on the internet and discovered that yes, there is a kind of cancer that can feel like hardened scar tissue in an implanted breast. It is rare and usually what you are feel is exactly what it is: a hardened piece of scar tissue.

I thought about it for a few weeks. Finally, I decided to see my oncologist. I’m seven years past my original cancer. Anyone who has had cancer knows you are never “cured” of cancer. You can be in remittance for a lifetime, but it can come back. Anytime, anywhere in your body.

If you come from a cancer-prone family, you could get an entirely new type of cancer in some other organ. If I’ve learned nothing else, it’s that successfully dealing with one disease doesn’t stop you from getting another.

I’ve also learned to not trust how I feel. I always think I’m fine. This is probably a survival mechanism. I will probably die while being convinced I’m suffering a mild and temporary setback or maybe a weather-related allergy.

So, I wasn’t worried about this turn of events. I hadn’t been concerned about what turned out to be bi-lateral cancer. Back then, I was sure it was just a benign cyst. It turned out to be cancer in both breasts.

Essentially, my prior record on guessing what’s wrong with me (I was also sure my heart was fine) has proven 100% wrong, so I went to see Dr. Tahir in May. He agreed it’s probably nothing more than hardened scar tissue. If I want to be absolutely sure, we could run a CT scan.  I’ve gotten so much radiation over the years, I’m hesitant to allow more radiation. Also, the co-pay for a CT scan is $450 which I don’t have. So I declined. He suggested I come back in a couple of months and see if anything had changed.

This was that followup visit.

Waiting at the Dana-Farber

Nothing had changed as far as I could tell … or as far as he could tell. He did encourage me to call him if anything bothers me at all, no matter where or what. I know this is for my benefit because he doesn’t believe I will call unless I think I’m actually about to croak. Still, the urgency of his tone — CALL ME ABOUT ANYTHING ANYWHERE, ANYTIME — made me edgy.

Some of this is probably about money. For want of $450, am I putting my health at risk?

I’m fairly sure (probably, maybe, or at least I think so) that if I thought this was life-or-death, I’d get the scan and figure out how to pay for it later. But, it’s also possible I want to avoid more surgery — even if it is life or death. I’ve had far too much surgery. Far too many hospitalizations. Far too many close calls with death. It’s not that I want to die. I vastly prefer life to the alternative, but I’m tired of being sliced and diced. I’m tired of years of recovery and being told how great I’m going to feel … later. I’m still waiting to feel great.

Meanwhile, all the blood work came back normal. Normal, normal, normal with a slight elevation in liver enzymes,. But that was true last time, so maybe that’s the new normal. Blood pressure normal. Weight up a little. No one except me seems worried about it. The blood levels are a pretty good indicator that nothing major is going wrong. Something would show in all those tests … right?


Sometimes I feel like a potato being slowly grated.

Every year or two, doctors remove a piece of me. Sometimes a little piece — a couple of bad heart valves, for example. Sometimes a couple of breasts. Once, a piece of bone in my leg and they added two implanted breasts, two replacement valves and a pacemaker. I believe that makes me two new pieces above my initial out-of-the-factory model.

Approximately 75% of me works almost as well as the original bits. That’s what my memories tell me, but normal is so distant in mental time, I have to work from memorized tidbits of what “normal” felt like. Of course, the rebuilt me isn’t quite the same. The individual pieces look okay, though — if you don’t look too closely. And I keep my clothing on.

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.

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

Case Management

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

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

Illustration: NBC News

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

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

A Re-Purpose

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

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

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

Helping One Another

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

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

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

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

“Healing those who seek my help”

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

The High Cost of Drugs

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

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

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


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

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

FORGING AHEAD WITH PURPOSE AND A HEADACHE

I have been depressed. Not that dark “can’t get out of bed” depression that some people get and that I have also experienced. This is the slow, grinding depression that accompanies having a lot of stuff to do that I don’t want to do.

As a start, I have to change doctors. Granted I’m not thrilled with my current doctor. He’s not a particularly caring, supportive guy … and he is far away. I will only go to see him if I’m sick enough to be afraid I’ll die … but that alone probably wouldn’t motivate me to change. It’s that my doctor is changing “groups” and the group to which he is moving doesn’t accept our insurance. So, I have to find another doctor.

72-Healthy-Trail-Canal-GA-042716_074

If you don’t have a doctor, you can always take a hike

General practitioners or “family doctors” are in short supply. Of all the specialties, they are the most necessary yet the lowest paid. They carry the heaviest patient loads and burn out fast. The shortage of these basic providers is a national crisis. It’s worst in thinly populated areas. Big practices are mostly clustered around larger cities and we aren’t a city. We’re also short of good surgeons and all kinds of specialists. They make so much better money in Boston and there are good research and teaching hospitals there. Any big city offers better choices, medically for both doctors and patients.

All my whining notwithstanding, I have to change doctors. A lot of paperwork is required, including providing a full list of all my prior surgeries, illnesses, etc. Such a bummer. I don’t remember all the surgeries. I don’t remember the names of the doctors who performed them and in many case, the exact name of the surgery or in what country or state it was performed.

This isn’t because I’m old. It’s because there have been so many over the years.

Above and beyond remembering what happen, where, when, and who was involved … I am not exactly thrilled to revisit the experiences. There are a lot of rancid memories that go with this stuff and having to dredge it up again makes me sad. I don’t even remember the name of my heart surgeon and that was just two years ago.

Medical marijuana

Regardless, I need to take care of it immediately. There is some good news in the midst of the not-so-good stuff. I think this guy may be a better doctor than the one I’ve got … and his office is a mere few miles down the road. It will be very nice to have a doctor (again) to whom I can go without driving 60 miles through heavy traffic!

Meanwhile, before I do all the paperwork, I have to go to the dentist. I need a crown for a crumbling tooth. I’ve lost so many teeth, I cannot afford to lose another. I also have to figure out how to pay for it, since Medicare doesn’t cover teeth. Or hearing. Or vision. Or, for reasons best known to someone who isn’t talking, asthma medicine. I have — such an irony — tons of credit. That takes care of the dentist, but I have to then pay off the credit and that’s trickier. Fixed incomes are — well — inflexible.

medicare confusionWhatever is right with America, our health care system is pathetic … yet it’s far better than it was before President Obama.

Forgive me if this isn’t my best or cheeriest day. Today is full of purpose and a head-throbbing determination on my part to take care of business. Mostly, I want it to be over.

DAILY POST | PURPOSE

STATE OF THE STATE: LAST YEAR, REDUX

It took me five months to see an oncologist from Fallon who ran my 2013 Medicare Advantage plan. In 2014, I switched to Blue Cross Blue Shield’s Value Advantage PPO. It came as a blast of clean air. Life has been so much better ever since. Not perfect, but better.

Still, this is a story worth retelling because although the names change, the same situations recur. Right now, I’m going through a similar snafu with the Commonwealth of Massachusetts. It has me convinced that my state is run by morons. Garry says I’m being unfair to morons.

72-Dana-Farber_020

This story had a beginning and an end. It started when, in November 2012 I gave up my expensive Humana Medigap policy and joined Fallon’s Senior Medicare Advantage plan. It sounded okay on paper.

The customer service person who signed me up assured me Dana-Farber in Milford was covered by Fallon. Untrue. It left me without an oncologist. I was not too upset. I could see my Dana-Farber doctor once more and get a referral from him.

custSVC

Wrong. My oncologist didn’t know anyone at UMass in Worcester which is Fallon’s only cancer care facility in the county.

Even this didn’t faze me. I’m in the maintenance phase. I go for checkups and blood tests. Nonetheless, cancer runs in my family. Mother. Brother. Both maternal grandparents. I’ve had cancer twice. It’s too soon to stop monitoring.

My Dana Farber oncologist said the UMass facility is good, but he couldn’t help me find a new doctor. He told me to call the HMO and ask them who they have in medical oncology with a specialty in breast cancer. I already knew my PCP couldn’t give me a referral.

I called Fallon.

She said — this is a quote: “We do not list our doctors by specialty.”

“What,” I asked, “Do you list them by? Alphabetically?”

I mean, seriously, if you don’t list doctors by specialty, how can anyone get an appropriate referral? This is senior health care . It’s cancer — not rare among the senior set. Not rare among any set.

Dana Farber lobby

I explained I needed a medical oncologist specializing in breast cancer. Cancer doctors are specialized and it did make a difference. No, there’s no such thing as “just an oncologist.” If ignorance was bliss, this was a happy woman.

I explained (again) it would not be okay to send me to “just any” oncologist. I needed a doctor who knew my cancer.

I spent an hour or two being told I needed to go to my primary care doctor for a referral. It was like talking to a robot. Another 45 minutes passed until I was transferred to a supervisor. I retold the story. She said she would “research the problem” and get back to me.

I called my doctor’s office, explained that I hadn’t been able to get a referral from the oncologist at the Dana-Farber, nor could I get a referral from Fallon who seemed to think my PCP should send me to the right doctor. Even though I told them that Dr. S. didn’t know the doctors at UMass, Worcester. I needed help.

A few hours later, my doctor’s office called back and gave me a name, an appointment, and a phone number. The appointment was for just a few days hence, also my birthday. I didn’t want an oncology appointment on my birthday. I called the office.

I got transferred, then transferred again. I ended up talking to Lisa, the administrator for the Breast Cancer Care department. It turned out the doctor with whom I’d been booked was a surgeon Also, they couldn’t do anything without my medical records — scattered through 3 hospitals and a doctor’s office.

Lisa said not to worry, she would take care of it. She did.

She changed the appointment, booked me with a doctor who specialized in my type of cancer, called the various offices and ordered my medical records sent to UMass. Said if I had any kind of problem, give her a call and she’d fix it. Women with cancer didn’t need extra problems. What a difference she made!

My PCP’s assistant called to ask why I’d cancelled the appointment she’d made. I explained that doctor was a surgeon. I’d already been surged. I needed a different doctor. She was pissed because it hadn’t been easy to get that appointment. She could not grasp the difference between a medical oncologist and a surgeon.

CustomerSvcFallonQuote

I explained again I didn’t need a surgeon. I have no breasts. I did need my medical records. She said yes, Lisa from UMass had called, but she wasn’t sure where to send them.

“Didn’t Lisa tell you where to send them?” I asked.

“Yes,” she said.

“Then … why don’t you send them where she told you to send them?”

“But you cancelled the appointment I made!” she said.

“I changed the appointment. Actually, Lisa changed it. Because the doctor to which you were sending me was the wrong doctor. Now I have an appointment with the right doctor. I’m not blaming you. Why are you mad at me?” I reassured her I truly appreciated her efforts.

“Oh,” she said. Not “I’m sorry.” Just “oh.”

“Right,” I said.

I subsequently got many calls from Fallon, all wanting to explain again why I was unhappy with their customer service. I said a patient should be able to call and get names of appropriate doctors and basic information about the doctor. This is fundamental to medical care.

Everyone agreed with me, but I was sure nothing would change. Inertia always wins.

The day was only half over; I was not done.

When I finished the marathon calls to Fallon, I got a call from Humana to remind me I hadn’t made a payment this month.

I hadn’t made the payment because I had cancelled the insurance when I switched to a Medicare Advantage (HMO) program. At the end of November, I had signed up with Fallon, then called Humana to cancel my policy as of the first of the year. I was told that as soon as my new program kicked in, the old policy would be automatically cancelled. There was nothing for me to do.

“Are you sure?” I asked.

“Absolutely,” I was told.

In was the middle of March. Humana was harassing me for money. When they called again, I got a person on the phone,  pointed out I’d cancelled the plan.

The representative said that he could see in his records I’d called to cancel. I’d been given incorrect information. I had to send them a letter. I could not cancel by phone. I said I signed up by phone. Why did I have to write a letter to cancel?

“Those are the rules,” he said.

“I want to speak to your manager,” I said. He explained that the manager would tell me the same thing. I pointed out that I didn’t care, I wanted to talk to a manager. I didn’t owe them any money.

He said I’d have to file a dispute to not pay them. Although it was their fault and they could see I called to cancel the policy, I would have to fix the problem, though they caused it.

I thought my head would explode.

customer-service

The manager reiterated indeed they’d given me incorrect information, but it was my problem. Tough luck lady. I hung up, steam coming out of my ears.

I took a breath, called their other customer service department.

The lady I spoke to looked it up, agreed they had given me erroneous information, contacted the cancellation department and assured me it was fixed. I have a name and a number in case it isn’t. I pointed out they had burned a whole year of good will in an hour. And any further harassment and I’d call the Attorney General and report them for sharp business practices.

It had grown dark while all this was going on and as the day had gone from morning to evening.

How come so many incompetent people have jobs? Why are they working when so many more intelligent and better qualified people are out of work? It’s a mystery.


STATE OF THE YEAR, REDUX, 2013 EDITION WITH UPDATES

HEART AND SOUL

I went to the cardiac surgeon the other day. I explained about the money problem. He apparently understood. Wow. A rational, friendly guy. With whom I had a normal conversation. I’m not used to that. I kept waiting for hostilities to break out, but they didn’t.

We put together a sort of plan. I need to reorganize my health insurance so I can afford the surgery. This means it will have to be after the turn of the year. In any case, it will take me that long to figure out how to get through to Medicare while the government is closed for business. I’m trying to stay calm, but I’m screaming inside.

The doctor said since I’ve made it this far — and I can breathe and am not all swollen with water retention — I’m likely survive another few months. How comforting is that?

BethIsrael-EastCampus

Meanwhile, I have nightly dreams I’m drowning in my sleep and can’t breathe. It’s my fear throttling me. Even though I’m essentially asymptomatic, it doesn’t make the fear go away. I control while I’m conscious, but at night, those demons are fast.

Diagram of the human heart 1. Superior Vena Ca...

The good doctor found it puzzling. I should be symptomatic as Hell. Go figure, right? My mitral valve is barely working and the aortic valve is 75% blocked by an over-developed muscle in the left ventricle. Because the mitral valve is not working, the muscle has had to work extra hard — apparently for some time — to move blood around. Which has made it grow big enough to block the aortic valve. In addition to replacing the mitral valve, they have to do a little creative slice and dice on that muscle. The fun never stops.

The lack of symptoms had the doctor looking at me funny. He kept checking for signs of swelling in my ankles and wrists. There wasn’t any. “You sure you aren’t taking medication?”

“Just hydrochlorothiazide … 25 mg. Standard dose … been taking it for years.”

“No Lasix?”

“No. I have a recliner. I keep my feet up. You know, about a year ago, I was having a really big problem with swollen ankles. I looked like I had elephant legs. Then it went away.”

“Just … went away?”

“Yeah. Just went away.”

My Surgeon who isn't too busy to see me.

My Surgeon. He isn’t too busy to see me.

“That’s strange. Symptoms don’t usually just … go away. Not without medication. And you’ve seen your cardiologist?”

“No. My cardiologist is too busy to see me until next February.”

“Right. I forgot. You have a phantom cardiologist.”

“Yeah. He seems to be the only game in town, so to speak and he’s a very busy man. So I haven’t seen a cardiologist at all. Just you. And a nurse practitioner. Who didn’t mention the whole thing with the aortic valve. I think she was 12. Barely in puberty.”

Laughter. Not guffaws. More like amicable chuckles.

“Well, when you get your insurance straightened out, we’ll get you scheduled. Get your teeth taken care of in the meantime.”

“Will do. And thanks.”

Maybe I don’t need heart valves? Perhaps I could skip this whole thing? Ah … ephemeral dreams of improved health. I dream of surgery not done with my life nonetheless lived.

MEDICARE – MAKIN’ ME CRAZY! IT DOESN’T HAVE TO BE THIS BAD (REALLY)

I have a high IQ. I know this. I don’t say this as a brag, but as an illustration of the problem. I spent my professional life writing highly technical documents which means I know how to read a document too. I need to switch from my “Medicare Advantage Plan” — the ultimate oxymoronic misnomer — to straight Medicare backed by a Medicare Supplement Plan and a Part D Prescription plan. Which is what I had before I changed to my current horrible plan.

medicare confusion

When I signed up for this plan exactly one year ago, it had maximum out-of-pocket costs of just over $2200. Next year, it would be $6700+. They haven’t raised the premium, just reduced the benefits. We do not have $6700 and could not raise it if we sold everything we own. So I need to change plans. I have to get something that will cover me really, even though the premiums will be more than triple what they are now. Mind you I can’t afford higher premiums, but I’m out of choices. My life’s on the line, so I have to make this work.

This is not A.C.A. — aka Obama Care. This is regular old Medicare. It was like this when I first signed on (2004) except the premiums and deductibles were much lower and covered more.

They’ve been raising premiums and reducing coverage for the past decade. Bit by bit, tiptoeing around — like we won’t notice. They think we are stupid.

Until two years ago, I had MassHealth (Medicaid Massachusetts-style). I really didn’t notice because MassHealth picked up whatever Medicare didn’t. When they took away MassHealth, holy moly … talk about getting whacked with a two-by-four. My head is still spinning.

Meanwhile, I have to get an answer to this question: “What steps do I need to take to change from my current medical plan, with which I am dissatisfied, to a better plan? To whom do I need to talk? What forms need filling out?”

I cannot be the only person unhappy with their plan who wants to switch. Open enrollment starts on October 15, so I’m right on target for taking care of business. I’m good at this kind of thing. Usually. Yet fifteen minutes into trying to get an answer to this question, I find myself staring at asterisks that do not lead to footnotes or other information. Statements telling me “This plan may not cover all medical expenses.” With no explanation of what that means. Doesn’t that sound a bit threatening to you? Sets my teeth on edge, lemme tell ya.

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I’m smart. I’m not senile. I’m not on any mind-altering substances but my brain is turning to jelly and I’m ready to start banging my head on the table. Who wrote this stuff? The only way you can write documentation this bad is (a) be a really bad writer, and (b) not know what you’re talking about. Only with that precise combination of poor writing skills and misinformation can you produce documentation which informs no one while confusing and infuriating everyone. It doesn’t have to be this bad.

Hire me. I’ll rewrite it and when I’m done, pretty much everyone will be able to understand it. It’s not such a leap to ask that information be written clearly and organized logically.

Considering Medicare is aimed at the elderly and infirm and I — not all that elderly or infirm — cannot make heads or tails of it? Pity the folks who’ve had a stroke or just aren’t good at deciphering complicated documents.

Hello My Government! Yoohoo out there! Show some compassion. Hire some writers. Make informed decisions possible. This stuff is life or death, y’know?