AND AFTER ALL THE TESTS … Marilyn Armstrong

After Garry and I left our car with the valet at UMass Memorial, I looked at Garry and commented: “I should have just gone to an eye doctor.”

Considering all the testing and checkups, you’d think I’d have a diagnosis. Nope. I know just what I knew when this round of medical visits began. This was one of the times when two things happened at the same time. I wrongly assumed the two events were connected.

Back again

It’s a natural reaction. I had my little seizure, or what seemed like one and my vision went all funky at the same time. One plus one is expected to equal two, except when it remains one and one and they don’t add up.

Seizures? Not exactly.

I have narcolepsy. It’s one of the many reasons I don’t want to drive. One time, a few years ago I fell asleep while driving. The next thing I knew, I had an incident with a tree. I don’t know how far I drove (asleep) before I hit the oak. I also knocked off my rearview mirror somewhere en route to the big tree and no one ever found it.

It’s possible I drove for a mile or two (there was no traffic) before I drifted to the side of the road and conjoined with nature.

It turns out that narcolepsy can produce those weird sort of seizures I had and one of the ways you can tell it was not a real seizure is that it leaves nothing behind. You aren’t groggy or muddle-brained. It’s literally as if nothing happened. I remember once in the middle of a home barbecue, I collapsed in the hallway. On further checking, I had fallen asleep and just fell in a heap on the stairwell. Everyone thought it was funny. I didn’t think it was all that funny, but I didn’t know I had narcolepsy.

It can be a difficult problem to diagnose. My shrink finally nailed it.

Ever since I hit that tree, I’ve been wary of driving. It’s why I always have a stash of amphetamines with me. It’s no big deal if I fall asleep at home — as long as I don’t hit my head or face on something on my way down. Which I have also done. In that case, I was walking, said I felt funny, but apparently kept walking (but not awake) into a door frame. That time I also woke up screaming but with good reason. I split my face open. It required some interesting stitching of nose and lips … and a missed interview for a job I wanted.

I also was a serious sleepwalker for many years. I don’t think I still sleepwalk because it’s too hard to get out of bed … but when things go really missing and I eventually find them in some strange place, I suspect I did it while asleep. My granddaughter also sleepwalks. Is it genetic?

It never crossed my mind that all of these events were part of the things narcolepsy does, but that’s what they’re telling me.

The narcolepsy is not new. I have spent many hours sleeping in my car by the side of the road because I knew I was going under, only to be woken up by the cops telling me it’s illegal to sleep by the side of the road.

I would point out that this is exactly what they tell you to do if you feel you cannot continue to drive. It’s in all the books on safe driving. Nonetheless, they immediately tell me I have to move along. Have they missed the part where I say I was too tired to keep driving and had to stop or I was going to have an accident?

Stupid is as stupid does.

So that’s the story of the seizures. They aren’t seizures. They are my narcolepsy acting up, usually on a day when I not taken amphetamines. They don’t make the problem go away, but for at least four or five hours, they keep me reasonably alert.

Finally, the strangest part of narcolepsy is that you may have symptoms of its approach (intense sleepiness), or you may be hit by waves of dizziness. Or a sudden upset stomach. Or you are fine and fall over. Asleep.

It’s not a disease, though it is a condition and while the amphetamines help for short periods when I absolutely must be awake, it doesn’t cure anything.

Nothing cures it probably because they aren’t entirely sure what causes it. They have theories, most of which seem to involve sleep apnea except I don’t have sleep apnea. I do have exactly the right kind of insomnia, though. The kind where I fall asleep directly into a dream, then wake up every two hours until finally, a nightmare makes me decide sleeping isn’t a good idea and anyway, the dogs are barking.

What about my eyes?

It’s probably (drumroll) … cataracts. My right eye is relatively clear, but my left eye is cloudy.

I’m 72. Garry was treated for cataracts when he was barely 60 and my father had cataracts years before me. Actually, everyone gets cataracts sooner or later. Dogs, cats, and horses, too. I’m just a bit late, but by age 75, everyone either has cataracts or has had the surgery. It is THE most widely performed surgery in the world. They expect to perform around 30 million cataract surgeries next year. That’s a lot of surgeries.

You get old? You get cataracts. You can also get cataracts without getting old. Some babies are born with them.

There are no eyedrops of any other form of correction for cataracts other than surgery. You get them repaired or you don’t. If you don’t, eventually you can’t see.

So my next doctor is the ophthalmologist. It would appear that I may not need new glasses. I may need new eyes. Which sounds like a good idea. Garry and Tom both have had the surgery and they LOVE their new eyes. Finally — NO glasses.

Wrapping Up: Coincidence is not a sign from the Universe

Just because two things happen at the same time doesn’t mean they have anything to do with each other. We all read too many mystery novels where everything is a clue. This is particularly important when you are dealing with physical symptoms. Simultaneous doesn’t mean causative.

And this is also what’s wrong with having so many specialists who only look at your wrists or fingers or hips, but not your spine, brain, or eyes. I think most of us need someone who will look at all the stuff going on who can then tweeze the pieces apart and figure out what is really wrong.

Dr. House, come back! I need you!

FACTORING IN THE TEST RESULTS – Marilyn Armstrong

FOWC with Fandango — Factor

So my test results came back. After I did a full translation of virtually every word in the report — I’m pretty good with medicalese, but this was way above my pay grade — I discovered that considering my age and stage of life, I’ve got functional, but not perfect arteries. If you want to factor in all the tests that were run initially during my first visit to the neurologist — and then this new set of tests — we know that I’m getting on in years.

Which is exactly what we knew before. We do not know if what the tests found to have anything to do with the visual symptoms. They could be connected, but they could also be entirely separate with no connecting thread. And worse, there’s actually no clear way to address the matter. It’s not like there’s a book which gives answers because what’s bothering me aren’t the symptoms for any known disease or condition or illness.

Thus I know what I knew when I started this process. I was afraid this would be the result and why I didn’t want to begin the process. It’s “non-result.”

A lot of information has been collected,  but are any of these results related to the symptoms? I’m not even sure why I started this process in the first place except that I felt I had some kind of obligation to find out if it meant something — or not.

“Or not,” seems to be the answer.

I’m just as worried (but more confused) than I was at the start. I’m overloaded with information that doesn’t mean anything to me. I suppose — or at least I hope — that this will make more sense after I see the doctor next week.

With all the advances we’ve made in medicine, in the end, a lot of it is more like art than science. Maybe someday it’ll be just like “Bones” on the Enterprise. Just use that little tricorder and poof! Diagnosis, cure, and life renewed.

I’m waiting. Aren’t we all?

TOO BUSY AND NOT PARTICULARLY DISINGENUOUS – Marilyn Armstrong

FOWC with Fandango — Disingenuous

I am not (mostly) disingenuous. I certainly lack false modesty. Okay, that’s not true either. I’m really terrible at taking compliments, especially when I am not sure I deserve them — but I really improve if I think I’ve earned it.

So, while I am not 100% honest, who is? If you count the fake excuses we make for places we don’t want to go — and little white lies about the dent in the hood of the car — we are all a little bit politely dishonest. We don’t lie about important stuff, though. The fact that I blog probably eliminates “disingenuous” from my resume.

I figure I’m honest enough, especially these days when I’m not even sure what honest is supposed to mean.  Are we all equally confused or is it just me?

Today, it’s off to the hospital to get tested for something that has been lingering with me since I was in my early thirties and for which I have been tested — repeatedly — both here and in Israel. Lots of guesses, all of them wrong. So now they are checking to see if I perhaps have had minor strokes without knowing it.

Tests and followup appointments for the next two weeks will keep me ridiculously busy. I don’t know how this can be, but I swear my life seems three times busier than it felt last year.

I used to have plenty of time to blog, write stories, take pictures and all that and still have time to read other people’s posts and comment. Now I swear by the time I am halfway through my first cup of coffee, I’m already late for something.

Today I am having a Carotid Duplex Scan, which is some kind of intriguing CATscan of my throat and arteries to determine if I have had one or more minor strokes with no after effects. After which, there will be an appointment with the specialist to sort through the half dozen tests I’ve already done. And the bills. Sigh.

This will not even close to the first test for this problem, here or in Israel. They have more advanced testing now than the last time (about 18 years ago) I was tested. It will be interesting to see if they find out something. So far, this has been a lot of running around without anything to show for it. I didn’t want to do this because each time, the result is “idiopathic” — which is to say, medically clueless.

It could be anything or nothing.

This “small seizure” thing has been popping up intermittently for 40 years. It’s scary (especially to those who are around when it occurs), but it never seems to do any harm. Five minutes later, I’m fine and it feels like nothing happened. It may not occur again for years.

As we get older, though, it becomes more of an issue to determine what is happening. So we endure all the tests. So far, we know what isn’t wrong.

I’m betting I’m going through this entire testing and doctoring thing — and will know nothing more when I’m done than when I started.

Also under exploration is my spine. That’s of more concern. I’m hoping — seven years after being told there was nothing anyone could do — that maybe medicine has advanced and there’s something.

Not a cure it because it isn’t curable, but at least something that might make it feel better. Even a little better.

I’m off to the hospital. This time, I get to go to the big shiny building on the campus! Are we having fun yet?

IDIOPATHIC – Marilyn Armstrong

FOWC with Fandango — Idiosyncrasy

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

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

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

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

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

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

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

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

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

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

EKG setup

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

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

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

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

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

Glass on glass

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

Just call me idiopathic

A CALL FROM THE HEART GUY – Marilyn Armstrong

I hadn’t heard from the heart doctor. Having not heard anything, I eventually concluded that there must be nothing important to talk about because if there were, someone would have mentioned it.

This evening, the doctor called.

So it turns out — by the doctor’s reckoning — there’s not much to discuss.  From my point of view, a bit more to talk about.

My heart is as good as one can expect it to be — given how much surgery has been done and its condition to begin with. Hypertrophic Cardiomyopathy is a big deal and I had it for a long time before I knew about it.  I’ve had two replaced valves — aortic and mitral, as well as a replaced artery and an implanted pacemaker that will — in maybe four or five years — need a new battery. Assuming I’m still kicking around in four or five years.



How is my heart doing? As well as can be expected, thank you very much. The atriums are oversized, the ventricles are over-muscled, but all things considered, the heart is pumping reasonably well.

“So I’ve got another year you figure?”

“Probably.”

“That’s good. I don’t have to start packing yet.”

Of course, I don’t have the results of yesterday’s test yet, so who knows?

SLEEPLESS ELECTROENCEPHALOGRAM TOMORROW! THE FUN NEVER STOPS! – Marilyn Armstrong

I’ve got a “sleepless” EEG (electroencephalogram) tomorrow morning. It means I can’t go to sleep until midnight and I have to be up by four in the morning and be at the hospital by eight in the morning. No caffeine, but I can have breakfast.

I don’t know how to have breakfast without coffee. What am I supposed to eat? Without coffee, am I supposed to cook? Like … food?

I suppose it will be something to do while I have to wait to leave for the hospital. Do I need to tell you how much I’m not looking forward to this?

So please do not be surprised if I don’t make comments in the morning or write much. I am likely to go back to bed. Quite probably Garry and I will both go back to bed. Except I will have to take a shower and wash my hair first because they use a kind of glop to attach the electrodes to my head and I have to wash it out or it will turn to cement and I might never get it out of my hair.

Meanwhile, no one has called to give me information about last week’s echocardiogram. I called the office and she pointed out if there was anything wrong, they would have called me. So I can assume if there is anything amiss, I’d already know it.

I guess I’ll stop worrying.

Now all I have to do is worry about surviving without coffee and getting the goop out of my hair.

It’s going to be a really terrific day. And a great night, too. I can hardly wait. The high point of this day was that the hospital called me — a human BEING called me — to remind me about the test. A real live person called and asked me if I was going to be there. I said yes and she said “Great!” We both hung up.

Wow. A living person called me. How often does THAT happen?