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?
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?
Lately, I’ve been convinced there’s a brain tumor in my head, so I was glad to get to the neurologist. Finally.
We always laugh at how gorgeous TV doctors are. This one could go directly to her own TV series, no problem. She is beautiful and Garry paid very strict attention to every word she said. I don’t think he ever paid better attention to any doctor in his entire life.
Mostly what she was doing was asking a lot of questions. This can be confusing because a lot of stuff happened a long time ago and frankly, I simply don’t remember. Did I ever fall on my head?
Probably but who knows? Did I ever have meningitis? Well, actually, yes, I did. In Jerusalem. It got into the water and pretty much everyone in the city picked up viral meningitis. Viral (as opposed to the bacterial kind which may kill you) just makes you wish you were dead by giving you a raging high fever, a headache which is like every headache you’ve ever had in your entire life packed into one huge pounding head … and a full body rash. This is what makes it unique. The rash. Otherwise, it could as easily be Typhoid or Tick Fever or any of a number of insect or water-borne diseases.
We all watched me try to walk toe-to-toe (a lot of weaving — I’d never pass the drunk/sober test) and I took a computer test to see if I’m getting Alzheimer’s (probably not yet, but the future remains bright), and whether or not I can remember and recognize random patterns on a screen without a damned mouse to manipulate.
The controls on the machine were really aggravating. But I still came out pretty much cognitively “all there” minus whatever I’ve lost due to hanging around the computer too much and getting old.
The results? No results.
I need an EEG and then, maybe, a heavily and carefully supervised MRI to keep me from exploding (literally) and ruining their expensive machinery. Not merely ending my life, but ending half a million dollars worth of really pricey electronics.
The suspicions?
Complicated migraines (my best guess) or … epilepsy.
I just learned a lot about epilepsy. It is the most common neurological disease in the world and one out of every 26 people have it, had it, or will get it.
You can get it for no reason, fall on your head, get a disease (encephalitis or meningitis) … develop it from too much stress. Which means that everyone holding particularly stressful jobs has probably got it. There a version of it called “Sunflower Syndrome” which is photosensitive epilepsy triggered by lighting. Avoid dance clubs with flashing lights, watch TV in a well-lit room, wear sunglasses, don’t stare at the sun, etc. I love the name, though. “Please turn down the lights. I suffer from Sunflower Syndrome.”
Frozen rocks in March
All of this is made much more complicated because I have heart disease, had cancer, had meningitis, and probably fell on my head, but who can remember? Also, you can just pick it up for no known reason at all. It can be genetic — or not. It can be caused by wrong vitamins, not enough of some mineral, changing medications, stopping a medication you were taking, or not taking something you should be taking.
Driving isn’t a really good idea, although not illegal. Usually.
I don’t know what it is, but it isn’t M.S. and it’s probably not a brain tumor. Those are two good reasons to celebrate.
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.
When does the complexity of a problem exceed the original problem to such a degree that one would really rather run screaming into the snow than have to deal with all that “stuff”?
Let’s say it’s dinnertime. The shrimp isn’t defrosted and you can’t cook the potatoes because you are out of onions. Home fries without onions? Are you mad?
Or, it’s Thanksgiving and the oven won’t turn on. How are you going to make that big bird? Turkey stew? Seriously?
But those things are simple when compared to medicine, doctors, hospitals, and tests.
The Front Door at UMass Memorial where they said I didn’t have an appointment
Life is a mess of complications and complexities and misunderstandings.
I told you, but you heard something else. You told me everything, but I forgot what you said or I was too drugged to understand assuming I was awake but I’m sure I wasn’t.
So … whatever you said? I have no idea what it was and please don’t repeat it. I can’t hear you.
The older I get, the more simple I want my life to be. I want appointments at a time when I can get there comfortably. Nothing at 7:00 am in the morning after an hour and a half of bumper-to-bumper traffic.
There are tests they assure me I need — medically — that are so absurdly complicated, I think I’d prefer to die.
My favorite is the one where they want to examine my brain. It had taken weeks to even get the appointment. When I got there, they’d lost the appointment. It turns out they were looking in the wrong book because they really did have it — in the right book. Which they didn’t have at the lab.
They made me a new appointment, but this time, the test was ridiculous so I was glad when it rolled around, I was sick and couldn’t go. They wanted me to be in Worcester at 6 am. Get tested. Wait for two-hours for the second part of the test. Then wait several more hours until a doctor is available and he, without interpreting the test, tells me to go home. I’ll get a skeleton version of the results probably a week later. I will be told the result is “negative.”
What does negative mean? Is that good? Bad? Do I get to actually finally talk to a doctor? Or is “negative” the whole story. Since they aren’t going to tell me what they are testing for, what are they telling me?
More of UMass Memorial
I said “Why can’t I just talk to a doctor and explain what happened? Maybe none of these tests are necessary?”
“The doctor insists,” she said.
“Au contraire,” I murmured because I am the patient and I insist I be allowed to talk to the doctor before testing starts. This is expensive testing because our government keeps raising the prices for tests and we are poor. So, unless someone is willing to explain what they want to test for, I’m not going.
In the end, I didn’t take any tests. My cardiologist thinks I might need them, but he wants to do some heart testing first. But he does think, as I do, that whatever is wrong is probably not fatal and not in need of expensive testing. More like a diagnostic visit.
The world is complicated. At least half the time, it’s complicated because everyone is doing what someone else told them to do. Or they think they are doing what someone told them to do, but they aren’t. Because no one is listening to anyone.
After yesterday’s doctor visit, having to go to yet another doctor seems like charging up the same hill — and there’s a guy at the top with a machine gun. Nonetheless, gotta do it. I still don’t know where to put my head. I feel like I carry poisonous genes and have passed them down the line.
But, speaking of wan, I’m still in the process of trying to work my way out of anemia — the last of the repairable issues on my medical agenda. I’ve actually found an iron pill that seems to work and doesn’t make me ill. I’m not taking enough of it, I know, but it beats out the nothing I was taking before.
I’m beginning to really resent DNA.
Junco and I think a House Finch
Isn’t what you inherit supposed to be a sort of grab-bag? You get some of the stuff, but not ALL of it? Because I seem to have collected everything and be in the process of passing it along.
The good news? Yesterday’s doctor seemed to think that I didn’t look particularly anemic now. My gums have stopped being pale and that’s a good sign. Now all I have to do is worry whether or not I’ve managed to pass everything along to another generation. Or two.
So feeling wan? Literally and figuratively. At the same time!
Intrepid will always be the name of one of Horatio Hornblower’s ships. Somewhere in my 20s, I discovered Horatio Hornblower … and that’s how I learned that there was an actual use for trigonometry! If only they had mentioned this in school, I might have had a clue what I was doing instead of random calculations used to reach an answer that meant absolutely NOTHING to me.
We probably should have named The Duke “Intrepid.” He is quite the intrepid voyager. Except he likes when we come out and let him IN the yard, even though he jumped out. I guess out is easier?
Today I am off to see the wizard, also known as my cardiologist. He’s a new one. I’m trying to finally shake off Boston and get all my physicians lined up locally. Boston made the news the other night as officially (who is the official calculator of such things?) having the worst traffic of any city in the U.S. Not in the world. I think there are quite a few cities in Europe (and how about the traffic in London!) that could compete.
Boston has gotten terrible. When I moved here in 1988, traffic wasn’t great, but you could get from one place to another and generally even park when you got there. Not any more. Not only can it be impossible to get there, but if you do parking will cost the price of feeding two people for a week. Or more.
Bad. Very, very bad.
We spent something like 50 billion dollars to remodel our road and I swear they are worse than they were before we spend more than a decade redoing everything. The thing is, they move things around, but they didn’t make them bigger. Just stuck them underground (cough, cough, cough) or straightened out the crooked pieces. So we’ve got nice straight bumper-to-bumper traffic.
Boston traffic is only for the intrepid.
We’re away shortly. As we head for UMass, a mere 20 miles away, call us intrepid. Also, please hope they don’t find anything new or interesting.
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