Scene: About 1970, the era of women’s wigs, at a major intersection in Glendale, me in my ‘66 Mustang (“Charlie Horse”), windows open, gorgeous summer afternoon, I’m pulled into the intersection waiting for the light to change to make a left turn. The light changes, the opposing cars stop, I start my turn and some creep guns it from the curb lane to beat the light, and broadsides my car.
My wig flips off my head out the window into the intersection. (“OMG, my wig !!!”). I pull the car out of the intersection to the curb, and duck down, trying to get the bobby pins out of my hair. I’m in my mid-30s, but most of my hair is already gray, and I just let it go and let it grow under my trusty wig. So I’m hunched over in the car, trying to comb my hair with my fingers, and people are crowded around, peering in the window, thinking I’m injured and in pain because I’m clawing at my hair.
Meanwhile, there is much commotion and screaming coming from the bus stop across the street.
From my left side rear-view mirror, I can see my wig in the intersection. Traffic goes one way, and it tumbles along in that direction a few times. A few people run over it. Then the light changes, and the wig starts tumbling in another direction. Back and forth and all around it tumbles in the center of the intersection.
From the distance, I hear a siren. Thank God, I think, I can hide out in an ambulance. But the ambulance pulls up to the bus stop, not to me. Someone gets loaded on a stretcher and it drives away.
Suddenly, a kid from the corner gas station pushes his way through the crowd around my car, holding my wig with his index finger and thumb, pinky in the air, like it was fresh road kill. He says, “Is this yours, lady?”
I grab it and shove it down on my head. Dignity restored, I let people pull me from the car. As I wait for the cops (the guy who plowed into me had only managed to get his car a half block, then he took off running. I learned later, the car had been stolen), I talk to the onlookers, or as I prefer to think of them, my defense witnesses, and get the whole story.
A woman at the bus stop, who happened to be an epileptic, saw my wig fly off, and thought it was my head. The screams I’d heard as my wig bounced around the intersection were hers. “The head! The head!” The woman then had a grand mal seizure. Hence the ambulance.
I noticed as I talked to the cops and the tow truck driver and my witnesses that people were looking at me very strangely and not getting any too close.
When I got home, I looked in the mirror ... and there I was, long gray hair sticking out all around my head, with the brown wig perched precariously on top ... backwards! ... with tread marks on it !!
To this day, I still make three right turns to avoid making one left turn at that intersection.
Saturday, August 30, 2008
Saturday, August 16, 2008
Putting the Hell in Health Care
The worst thing about ALS so far is the paperwork.
Actually, that’s a bald-faced lie, but it makes a good lede. The real worsts, alphabetically, include cramps; dementia; drooling; fatigue; muscle atrophy; not being able to breathe, speak, or swallow normally; and twitches hither and thither.
But paperwork does make it into the top-40 annoyances. I have now accumulated five case managers, all busily managing my case for different purposes, and there are two more looming on the horizon, as soon as I can work them into my dance card. In the last two months, I have filled out more forms than H&R Block does in a year.
It seems that in the 21st century, you can’t just get sick any more and lie around complaining about how lousy you feel. Now you have to explain yourself to a lot of random strangers.
Among my current symptoms, I think dementia has the most potential for fun, but for now, let’s talk talking. In particular, talking with health-care providers who do not speak or understand English very well. Not that I’m judging them harshly for this, because, basically, I do not speak English any more, either. And unlike me, they’re going to get better and better at it. I’m just saying . . .
My speech is pretty much kaput and my voice is going fast, but I can still gurgle things out loud as long as there are no consonants involved. I wish I could speak clearly for just 20 minutes a week to take care of essential phone calls, but I know that even if that wish were granted and I called someone I needed desperately to talk to, I’d probably just be put on hold.
Here is a verbatim transcript of a phone call yesterday. I believe the caller was Russian, but I’m not too good at sorting out accents. Anyway, she was a newly hatched English speaker from somewhere.
Phone rings.
Hello? (In Beth Speak, this comes out “ehh owe?”)
Home Health Care Provider From Hell: Hi, this is XXXX, and I’m with XXX Home Health Care. Our nurse will come to see you this afternoon about 5 p.m.
(Surprised pause. I didn’t know I had a nurse.)
HHCPFH: Hello? Hello?
Yes, hello.
HHCPFH: Hi, this is XXXX, and I’m with XXX Home Health Care. Our nurse will come to see you this afternoon about 5 p.m.
That’s no good. We won’t be here.
HHCPFH: Where will you be?
Excuse me?
HHCPFH: Where are you going?
(long pause) Out.
HHCPFH: You won’t be there?
No.
HHCPFH: When you do want us to come?
Uh ... how about Monday, early afternoon. (Beth Speak: “Uh, how uh but mun ay, ur eee af er nune?)
HHCPFH: Thursday?
No, Monday.
HHCPFH: You don’t want us to come today?
No, we won’t be here.
HHCPFH: You’ll be gone till Monday?
No, we’ll be gone this afternoon.
HHCPFH: You’ll be gone tomorrow? You won’t be home?
No, we’ll be home tomorrow.
HHCPFH: We can come tomorrow.
No, please come on Monday.
HHCPFH: You don’t want us to come tomorrow?
No, I want you to come on Monday.
HHCPFH: What time?
Early afternoon.
HHCPFH: OK, we’ll be there between 5 and 5:30.
No, early afternoon.
HHCPFH: Thursday afternoon?
No, Monday afternoon.
HHCPFH: OK, Monday, 5 o’clock.
No, early. EARLY. (Beth Speak: UR EEE!!)
HHCPFH: Thursday?
NO! NO! MONDAY!!
HHCPFH: Monday?
Yes.
HHCPFH: What time?
EARLY FREAKIN’ AFTERNOON!!
HHCPFH: OK. We’ll be there at 5 o’clock.
NO! NO GOOD! MAKE IT EARLIER!
HHCPFH: Why don’t you want us to come at 5?
It’s not a good time for me.
HHCPFH: What time do you want us to come?
(Long pause. Clearly, the concept of “early afternoon” is not ringing any bells with this woman. I think furiously: What words am I still able to pronouce that she might understand?)
One.
HHCPFH: Hello? Are you there? Hello?
I'm here.
HHCPFH: When do you want us to come?
Monday, 1 p.m.
HHCPFH: OK, Monday. What time?
(At top of lungs) ONE O' CLOCK !!!
HHCPFH: One?
(whimper) Yes.
HHCPFH: OK. (click)
And just think — I get to sit down with this woman and chat about amyotrophic lateral sclerosis and frontotemporal dementia when she shows up Thursday at 5 p.m.
I think my dementia just kicked up a few more notches.
Actually, that’s a bald-faced lie, but it makes a good lede. The real worsts, alphabetically, include cramps; dementia; drooling; fatigue; muscle atrophy; not being able to breathe, speak, or swallow normally; and twitches hither and thither.
But paperwork does make it into the top-40 annoyances. I have now accumulated five case managers, all busily managing my case for different purposes, and there are two more looming on the horizon, as soon as I can work them into my dance card. In the last two months, I have filled out more forms than H&R Block does in a year.
It seems that in the 21st century, you can’t just get sick any more and lie around complaining about how lousy you feel. Now you have to explain yourself to a lot of random strangers.
Among my current symptoms, I think dementia has the most potential for fun, but for now, let’s talk talking. In particular, talking with health-care providers who do not speak or understand English very well. Not that I’m judging them harshly for this, because, basically, I do not speak English any more, either. And unlike me, they’re going to get better and better at it. I’m just saying . . .
My speech is pretty much kaput and my voice is going fast, but I can still gurgle things out loud as long as there are no consonants involved. I wish I could speak clearly for just 20 minutes a week to take care of essential phone calls, but I know that even if that wish were granted and I called someone I needed desperately to talk to, I’d probably just be put on hold.
Here is a verbatim transcript of a phone call yesterday. I believe the caller was Russian, but I’m not too good at sorting out accents. Anyway, she was a newly hatched English speaker from somewhere.
Phone rings.
Hello? (In Beth Speak, this comes out “ehh owe?”)
Home Health Care Provider From Hell: Hi, this is XXXX, and I’m with XXX Home Health Care. Our nurse will come to see you this afternoon about 5 p.m.
(Surprised pause. I didn’t know I had a nurse.)
HHCPFH: Hello? Hello?
Yes, hello.
HHCPFH: Hi, this is XXXX, and I’m with XXX Home Health Care. Our nurse will come to see you this afternoon about 5 p.m.
That’s no good. We won’t be here.
HHCPFH: Where will you be?
Excuse me?
HHCPFH: Where are you going?
(long pause) Out.
HHCPFH: You won’t be there?
No.
HHCPFH: When you do want us to come?
Uh ... how about Monday, early afternoon. (Beth Speak: “Uh, how uh but mun ay, ur eee af er nune?)
HHCPFH: Thursday?
No, Monday.
HHCPFH: You don’t want us to come today?
No, we won’t be here.
HHCPFH: You’ll be gone till Monday?
No, we’ll be gone this afternoon.
HHCPFH: You’ll be gone tomorrow? You won’t be home?
No, we’ll be home tomorrow.
HHCPFH: We can come tomorrow.
No, please come on Monday.
HHCPFH: You don’t want us to come tomorrow?
No, I want you to come on Monday.
HHCPFH: What time?
Early afternoon.
HHCPFH: OK, we’ll be there between 5 and 5:30.
No, early afternoon.
HHCPFH: Thursday afternoon?
No, Monday afternoon.
HHCPFH: OK, Monday, 5 o’clock.
No, early. EARLY. (Beth Speak: UR EEE!!)
HHCPFH: Thursday?
NO! NO! MONDAY!!
HHCPFH: Monday?
Yes.
HHCPFH: What time?
EARLY FREAKIN’ AFTERNOON!!
HHCPFH: OK. We’ll be there at 5 o’clock.
NO! NO GOOD! MAKE IT EARLIER!
HHCPFH: Why don’t you want us to come at 5?
It’s not a good time for me.
HHCPFH: What time do you want us to come?
(Long pause. Clearly, the concept of “early afternoon” is not ringing any bells with this woman. I think furiously: What words am I still able to pronouce that she might understand?)
One.
HHCPFH: Hello? Are you there? Hello?
I'm here.
HHCPFH: When do you want us to come?
Monday, 1 p.m.
HHCPFH: OK, Monday. What time?
(At top of lungs) ONE O' CLOCK !!!
HHCPFH: One?
(whimper) Yes.
HHCPFH: OK. (click)
And just think — I get to sit down with this woman and chat about amyotrophic lateral sclerosis and frontotemporal dementia when she shows up Thursday at 5 p.m.
I think my dementia just kicked up a few more notches.
Wednesday, July 23, 2008
They'll Have to Pry Google From My Cold Dead Hands
Just because I’ve been diagnosed with a serious disease does not mean I intend to give up my favorite hobby: hypochrondria. There is nothing in life so dire that I cannot make direr if you give me a minute or two.
For instance, a couple of weeks ago, I noticed a funny bruise on the back of my hand, which appeared the next day (to my horror!) to be spreading toward my wrist. I went immediately, 0-60 in 1 second flat, to flesh-eating bacteria. Did not hesitate, did not pause, did not for even one moment consider that perhaps I had bumped my hand and, well, bruised it.
I was still researching flesh-eating bacteria on Google two days later and trying to figure out how much of my hand they would need to amputate to save my life, when I noticed the bruise was gone. Another narrow escape!
When the neurologists were recently trying to determine which of several diseases I might have — so many to choose from! — I made the logical assumption that I probably had them all. Or, at least two or three, enough to account for all my symptoms, which ran to two printed pages, in 11 point type, single spaced. Heaven forbid that there should be a twitch on my body left unaccounted for.
Having lived in a medical fantasy land all my life, it feels a little strange to actually have something real, certified as genuine by the medical establishment. But then, as they say, even paranoids make real enemies sometimes.
Once, I not only convinced myself that I had pneumonic plague, I managed to convince a couple doctors, too. I ended up in isolation at the hospital, with everybody who came into the room wearing masks, paper jump suits and shower caps, and disposing of them before they left. It was very dramatic.
There was a logical reason for my assumption, of course. I had recently been to Sequoia National Park, and had observed a sign there reading, “WARNING: Pneumonic plague has been found in some rodents in the park. Avoid sickly animals. If you develop a fever within 10 days of your visit, see a doctor.”
Well, you don’t have to tell me something like that twice.
It has always been my policy to avoid sickly animals unless they’re my own, but I had petted a darling little kitty at the motel, and, wouldn’t you know it, after I returned home, I developed a fever. Reviewing my visit to the park, I decided that the motel cat had seemed perhaps a little on the lethargic side. Then I found I couldn’t breathe very well, so I called my doctor and told him the whole sad story . . . Sequoia, the sign, the cat, the fever of 103, etc.
I was told to head to the hospital, where I was rushed into isolation. As I lay on the hospital bed, the attending doctor told the assembled crowd that I might have bubonic plague. I raised my head feebly and tugged at his sleeve. “No, it’s pneumonic plague,” I gasped, “new MON ick, not bubonic. P-N-E-U-M-O-N-I-C.” I fell back exhausted. He looked a little irritated, and said, “Whatever.”
It turned out to be garden-variety pneumonia, which they quickly cured, but to this day, I still believe that cat was trying to do me in. While lying in the hospital in lonely isolation, I occupied myself by composing my obit, “Cat Lover Dies of Plague.”
I would like to see a medical drama on TV that employs the kind of inane conversations I get into in hospitals, such as discussing whether I am dying of pneumonic or bubonic plague. For another instance, I had a genuine heart attack a few years after my faux plague, and was lying face down on the bathroom floor chewing two aspirins when the paramedics arrived. (One of the paramedics said, “We don’t need a gurney, she can’t weigh more than 120 pounds, I’ll carry her,” and I thought, “There is a God! I’m going to die in the arms of someone who thinks I only weigh 120 pounds.” He picked me up with a surprised grunt — I’m small but I’m dense — and staggered with me out to the ambulance. His estimate of my weight was off by about a stone, as they would say in England. A very large stone. Actually, more like a boulder. But I digress.)
Once at the hospital, the emergency room people frantically started attaching needles and tubes, and one of the nurses said, “Get her an aspirin.” I tugged at her sleeve and said, “I already took two aspirin at home,” and she said reproachfully, “You don’t need two aspirin, you only need one,” and I said, “I’m sorry, I didn’t know,” and she said, “That’s all right, but next time, remember, you only need one,” and I said, “OK.”
Wait. Next time?
Later, while lying bored silly in the critical care unit, I updated my obit yet again: “Heart Attack Victim Didn’t Know Any Better.”
For instance, a couple of weeks ago, I noticed a funny bruise on the back of my hand, which appeared the next day (to my horror!) to be spreading toward my wrist. I went immediately, 0-60 in 1 second flat, to flesh-eating bacteria. Did not hesitate, did not pause, did not for even one moment consider that perhaps I had bumped my hand and, well, bruised it.
I was still researching flesh-eating bacteria on Google two days later and trying to figure out how much of my hand they would need to amputate to save my life, when I noticed the bruise was gone. Another narrow escape!
When the neurologists were recently trying to determine which of several diseases I might have — so many to choose from! — I made the logical assumption that I probably had them all. Or, at least two or three, enough to account for all my symptoms, which ran to two printed pages, in 11 point type, single spaced. Heaven forbid that there should be a twitch on my body left unaccounted for.
Having lived in a medical fantasy land all my life, it feels a little strange to actually have something real, certified as genuine by the medical establishment. But then, as they say, even paranoids make real enemies sometimes.
Once, I not only convinced myself that I had pneumonic plague, I managed to convince a couple doctors, too. I ended up in isolation at the hospital, with everybody who came into the room wearing masks, paper jump suits and shower caps, and disposing of them before they left. It was very dramatic.
There was a logical reason for my assumption, of course. I had recently been to Sequoia National Park, and had observed a sign there reading, “WARNING: Pneumonic plague has been found in some rodents in the park. Avoid sickly animals. If you develop a fever within 10 days of your visit, see a doctor.”
Well, you don’t have to tell me something like that twice.
It has always been my policy to avoid sickly animals unless they’re my own, but I had petted a darling little kitty at the motel, and, wouldn’t you know it, after I returned home, I developed a fever. Reviewing my visit to the park, I decided that the motel cat had seemed perhaps a little on the lethargic side. Then I found I couldn’t breathe very well, so I called my doctor and told him the whole sad story . . . Sequoia, the sign, the cat, the fever of 103, etc.
I was told to head to the hospital, where I was rushed into isolation. As I lay on the hospital bed, the attending doctor told the assembled crowd that I might have bubonic plague. I raised my head feebly and tugged at his sleeve. “No, it’s pneumonic plague,” I gasped, “new MON ick, not bubonic. P-N-E-U-M-O-N-I-C.” I fell back exhausted. He looked a little irritated, and said, “Whatever.”
It turned out to be garden-variety pneumonia, which they quickly cured, but to this day, I still believe that cat was trying to do me in. While lying in the hospital in lonely isolation, I occupied myself by composing my obit, “Cat Lover Dies of Plague.”
I would like to see a medical drama on TV that employs the kind of inane conversations I get into in hospitals, such as discussing whether I am dying of pneumonic or bubonic plague. For another instance, I had a genuine heart attack a few years after my faux plague, and was lying face down on the bathroom floor chewing two aspirins when the paramedics arrived. (One of the paramedics said, “We don’t need a gurney, she can’t weigh more than 120 pounds, I’ll carry her,” and I thought, “There is a God! I’m going to die in the arms of someone who thinks I only weigh 120 pounds.” He picked me up with a surprised grunt — I’m small but I’m dense — and staggered with me out to the ambulance. His estimate of my weight was off by about a stone, as they would say in England. A very large stone. Actually, more like a boulder. But I digress.)
Once at the hospital, the emergency room people frantically started attaching needles and tubes, and one of the nurses said, “Get her an aspirin.” I tugged at her sleeve and said, “I already took two aspirin at home,” and she said reproachfully, “You don’t need two aspirin, you only need one,” and I said, “I’m sorry, I didn’t know,” and she said, “That’s all right, but next time, remember, you only need one,” and I said, “OK.”
Wait. Next time?
Later, while lying bored silly in the critical care unit, I updated my obit yet again: “Heart Attack Victim Didn’t Know Any Better.”
Sunday, July 13, 2008
Don't Bogart That Bon-Bon
After neurologist #6 diagnosed me with ALS and I stopped sobbing long enough to catch my breath, he said, “The most important thing you can do now is eat. Forget diets. Forget cholesterol. Forget calories. Just eat, eat, eat. You don’t want to lose any more weight.”
Which set my mind a’racing, mulling the possibilities. I had already lost 24 pounds since the ALS symptoms started two years ago, which I thought was a neat side-effect of whatever-it-was-I-had, but apparently this was not a Good Thing. And here I’d been so proud of once again being able to locate my ribs! I’ve been on a diet since 1948, when I turned 13 and first decided I needed to lose five pounds. I’ve been trying to lose those same five pounds, or multiples thereof, for the last 60 years. In fact, trying to lose five pounds has truly been my life’s work. My calling.
And now, this ALS thing is upsetting my entire world view.
I said cautiously, “Sooooooo ... does this mean I can eat See’s Candies all day long?”
He said, “Absolutely.”
“Really! How about cheesecake?”
“Absolutely.” He eyed my wrinkles and white roots, and added, “This may shock you, but you might want to consider medical marijuana, just to help your appetite.”
I tried to look shocked in an age-appropriate manner, but it’s hard to pull that off when your face muscles are all going in five different directions. In fact, when I try to achieve any specific expression these days, all I can usually summon up is a little light drooling, like a bemused St. Bernard.
But shocked I was. After all, I’ve been clean and sober for 28 years and 10 months (who’s counting?), and my immediate thought was, “Medical marijuana?!? Where the hell were you when I needed you?” (To help my appetite. Of course! Why hadn’t I thought of that? Doctor’s orders, doncha know. Keeps me alive! Oh, and pass me the Bacardi, too, dahling.)
I was taking notes during all this, scribbling furiously: “Sees pot chezcak eat mor.”
I figured this was just general good advice for any patient who has been losing weight without hardly trying, but then neurologist #7 told me the same thing, and added a little more detail. She said there are only two things proven so far to slow the progression of ALS: One is Rilutek, the med I mentioned in my last blog, and the other is gaining weight. And, she said, gaining weight actually slows the progression of ALS even more than Rilutek does.
Well, now we’re talking, people. If there’s one thing I can do, it’s gain weight. With apologies to Lou Gehrig . . . stand back, I’m gonna hit this one right out of the ballpark.
I am now reading grocery labels more assiduously than ever before, but to opposite effect. I search the bread aisle until I find whole-wheat bread with 120 calories per slice. No more wimpy 70-calorie breads for me. I read every label in the ice cream section, with Häagen-Dazs the clear winner at 270 calories per half-cup. Into the basket it goes, to be added a cup or two at a time to my dinner smoothies. I’m scarfing down cans of Ensure and similar supplements, with scoops of body-builder protein powder tossed in with them in the blender, along with the ice cream and cups of chocolate syrup. I pile fresh fruit into the blender for lunch, with protein powder, more Ensure, liquid vitamins, and everything I can find in the produce section that appears to be of a vaguely blendable nature. I snack on cheesecake or lemon meringue pie every chance I get.
If it weren’t for the fact that this disease is progressive and fatal, this would actually be a pretty great lifestyle. (Every ointment just has to have a little fly in it, doesn’t it?) I do occasionally miss eating real food, which I can no longer chew or swallow very well, (except for soggy toast, scrambled eggs, and the aforementioned lemon meringue pie) but this regimen ain’t half bad.
And, fortunately, I had saved all my fat clothes, just in case.
Moral: Never, ever, ever throw out your fat clothes. I have now gained six pounds in eight weeks. Take that, ALS! At this rate, I’ll live forever, or until I can’t squeeze into the ice cream aisle any longer. Or, until Häagen-Dazs goes out of business, which ain’t gonna happen on my watch, if I can help it.
(But, damnit, Janet, I do miss seeing my ribs, which are once again slowly disappearing somewhere inside the outside of me. But, I guess you can’t have everything.)
Which set my mind a’racing, mulling the possibilities. I had already lost 24 pounds since the ALS symptoms started two years ago, which I thought was a neat side-effect of whatever-it-was-I-had, but apparently this was not a Good Thing. And here I’d been so proud of once again being able to locate my ribs! I’ve been on a diet since 1948, when I turned 13 and first decided I needed to lose five pounds. I’ve been trying to lose those same five pounds, or multiples thereof, for the last 60 years. In fact, trying to lose five pounds has truly been my life’s work. My calling.
And now, this ALS thing is upsetting my entire world view.
I said cautiously, “Sooooooo ... does this mean I can eat See’s Candies all day long?”
He said, “Absolutely.”
“Really! How about cheesecake?”
“Absolutely.” He eyed my wrinkles and white roots, and added, “This may shock you, but you might want to consider medical marijuana, just to help your appetite.”
I tried to look shocked in an age-appropriate manner, but it’s hard to pull that off when your face muscles are all going in five different directions. In fact, when I try to achieve any specific expression these days, all I can usually summon up is a little light drooling, like a bemused St. Bernard.
But shocked I was. After all, I’ve been clean and sober for 28 years and 10 months (who’s counting?), and my immediate thought was, “Medical marijuana?!? Where the hell were you when I needed you?” (To help my appetite. Of course! Why hadn’t I thought of that? Doctor’s orders, doncha know. Keeps me alive! Oh, and pass me the Bacardi, too, dahling.)
I was taking notes during all this, scribbling furiously: “Sees pot chezcak eat mor.”
I figured this was just general good advice for any patient who has been losing weight without hardly trying, but then neurologist #7 told me the same thing, and added a little more detail. She said there are only two things proven so far to slow the progression of ALS: One is Rilutek, the med I mentioned in my last blog, and the other is gaining weight. And, she said, gaining weight actually slows the progression of ALS even more than Rilutek does.
Well, now we’re talking, people. If there’s one thing I can do, it’s gain weight. With apologies to Lou Gehrig . . . stand back, I’m gonna hit this one right out of the ballpark.
I am now reading grocery labels more assiduously than ever before, but to opposite effect. I search the bread aisle until I find whole-wheat bread with 120 calories per slice. No more wimpy 70-calorie breads for me. I read every label in the ice cream section, with Häagen-Dazs the clear winner at 270 calories per half-cup. Into the basket it goes, to be added a cup or two at a time to my dinner smoothies. I’m scarfing down cans of Ensure and similar supplements, with scoops of body-builder protein powder tossed in with them in the blender, along with the ice cream and cups of chocolate syrup. I pile fresh fruit into the blender for lunch, with protein powder, more Ensure, liquid vitamins, and everything I can find in the produce section that appears to be of a vaguely blendable nature. I snack on cheesecake or lemon meringue pie every chance I get.
If it weren’t for the fact that this disease is progressive and fatal, this would actually be a pretty great lifestyle. (Every ointment just has to have a little fly in it, doesn’t it?) I do occasionally miss eating real food, which I can no longer chew or swallow very well, (except for soggy toast, scrambled eggs, and the aforementioned lemon meringue pie) but this regimen ain’t half bad.
And, fortunately, I had saved all my fat clothes, just in case.
Moral: Never, ever, ever throw out your fat clothes. I have now gained six pounds in eight weeks. Take that, ALS! At this rate, I’ll live forever, or until I can’t squeeze into the ice cream aisle any longer. Or, until Häagen-Dazs goes out of business, which ain’t gonna happen on my watch, if I can help it.
(But, damnit, Janet, I do miss seeing my ribs, which are once again slowly disappearing somewhere inside the outside of me. But, I guess you can’t have everything.)
Friday, July 4, 2008
O Canada!
O Canada!
Our friend and neighbor land!
True patriot love in all thy sons command.
There is only one medication so far that has any effect on ALS. It’s called Rilutek, and it slows the progression down somewhat. It costs $1,000 a month at my local drugstore.
With glowing hearts we see thee rise,
The True North strong and free!
From far and wide,
O Canada, we stand on guard for thee.
It’s $500 a month from Canada, including shipping and handling.
God keep thy land glorious and free!
O Canada, we stand on guard for thee.
O Canada, we stand on guard for thee.
Now, my insurance does happen to pay for this med, although the co-pay is $450, which kinda takes your breath away. Just think what the insurance company could save if they used a Canadian pharmacy. At this price, I hate to actually swallow and excrete these pills. I’d like to have them set in a tiara and swank around Albertson’s in it. I also use an inhaler to keep my lungs clear. It costs $340 a month at my local pharmacy, $32 a month from Canada.
And don’t even get me started on Lipitor.
I don’t begrudge Big Pharma what they charge for Rilutek. It’s only used for one disease, and we’re lucky someone is willing to make it at all. So, here’s a big shout-out to the manufacturer. Keep those little white pills coming! Charge whatever you have to! I’ll eat cat food! Hell, I’ll eat goat chow! I don’t care!
But this is about Canada. Without our friends to the north, there probably wouldn’t be a senior citizen left standing in the U.S. You’d think Big Pharma would want to keep their best customers (us elderly and/or sick) alive as long as possible with affordable prices, so that we can go on buying their products. But nooooo. I’m one of the Depression Babies, and there were so few of us, what does Big Pharma care? They’ve got the Baby Boomer stampede coming up hot on our heels, and the pharmaceuticals can afford to kill off all the Depression Babies, plus about half of the Baby Boomers, and still make a gazillion bucks a year.
(I was born in 1935, by the way, which had the lowest number of American babies born in any year in the 20th century. That’s why it was called the Great Depression. People were so depressed, they even stopped having sex. We’re a small cohort, but we’re choice. So far as I know, only three American babies were born in 1935: Elvis Presley, Woody Allen, and me. There may have been some others, who have slipped my mind, but not many . . .)
Plus which, not only are the Canadians smarter at politics than we are (they figured out how to stop the gouging by Big Pharma by simply having the government negotiate prices—duh!), but Canadians are a lot nicer than we are, too. One example of this is that they don’t start as many wars. In fact, name one they’ve ever started. (They’ve had some squabbles among themselves, but what country hasn’t?)
And it’s not that they don’t start wars because they don’t like to fight. Did you know the Americans attacked Toronto in 1813? Turns out that was a really bad idea. The Canadians won big time, as Rummy would say. We also attacked Montréal in 1813. (This was all connected to the War of 1812, doncha know.) Montréal was another big mistake: 460 Canadian troops turned back 4,000 American invaders!
(It was called the War of 1812, BTW, even though it was obviously not confined to that year. Just as the 1994 earthquake in L.A. is called the Northridge Earthquake even though the epicenter was in Reseda. “Northridge Earthquake” has a nicer ring to it than “Reseda Rumbler.” Likewise, “The War of 1812” just plain sounds better than “The War of 1812-’13-’14 and part of 1815,” and it fits into headlines and book titles better.
I’m not saying that Canadians are superior to us in every way, I’m just saying, a little appreciation is in order. And if you think I’m kissing up to the Canadians just because I love their pharmacists, you are so right.
But, all that aside, there is good news about the treatment of ALS. Turns out the most successful treatment known so far is . . . hold on . . . GAINING WEIGHT!!!
We’ll explore this interesting turn of events next week.
Saturday, June 28, 2008
I'm Only Going to Tell You This Once
Cheesh, one crummy blog, and already folks are complaining.
Remember, this is a blog not a doctoral dissertation, so, no, I’m not going to cite my sources. Does Drudge cite his sources? We’re on the Internet. You can look it up.
Any estimate of how long you live with ALS is probably an urban legend. In fact, I have recently learned of one woman with bulbar-onset ALS who is alive nine years later. Which is longer than I’d planned to live even without ALS. And look at Stephen Hawking.
So ... in many places, you’ll read that if you get ALS you’re going to die in ________ (fill in the blank) months/years, but all estimates are basically a bunch of hooey, because some people go fast and some people go slow, it can all speed up or slow down, and no one can predict who’s gonna do what when.
Which doesn’t stop anybody from predicting who’s gonna do what when.
But, just this once, I will make an exception to my no-citation rule, in this case concerning the “18 months to live” statement in my previous blog. In addition to what I learned in “Bulbar Onset 101” in my Google School of Medicine studies, I do have another authoritative source, although this particular source is probably hooey, too. In fact, it may be the hooiest of them all. Neurologist No. 3 (out of seven so far), told me a few months ago that I couldn’t possibly have ALS, because if I did, “You’d be six feet under by now. Heh-Heh.”
That is a direct quote, including the Heh-Heh. He chuckled complacently when he announced that, apparently expecting me to appreciate his wit as much as he did. Leading me to conclude that some neurologists are just sadists who couldn’t get into dental school.
(I tried to work “sleazy trial lawyers” and “crooked accountants” into the last sentence, too, to see how many professions I could insult in one breath, but couldn’t manage it.) (Not that I’m counting sadism as a profession. I think of it as more of a hobby, albeit one that is favored by some professionals more than others.)
Now, Neurologists 5, 6, and 7 have agreed that it is ALS. (I’ll leave out Neurologist No. 4, the nicest doctor I’ve ever met, who thought it might or might not not be ALS, he wasn’t sure . . . he thought maybe something else was going on . . . and admitted right out loud that he wasn’t sure! He goes straight into the Neurological Honesty Hall of Fame.)
Here’s how it works (or in the case of ALS, doesn’t work). Motor neurons in the brain that control muscular movements slowly die. The muscles they control grow weak and eventually atrophy. Most cases of ALS (75% ... you can look it up) start with the limbs. Your hands (or arms, or legs) grow weak, and you gradually lose the ability to use them.
After a while, usually a few years, the process spreads to what is called the “bulbar” region . . . the area of the brain that controls speech, swallowing, and breathing . . . and this is when things really go south. You can’t swallow liquids, you choke a lot, and sometimes when you do swallow, stuff gets into your lungs instead of your stomach, which is Not a Good Thing. You start slurring words, and eventually your speech become unintelligible. (This is where I’m at, and for those who know me, please no comments about how I was never too intelligible to begin with, so what am I complaining about.) Eventually, you lose your voice all together, then maybe you get pneumonia from the gunk in your lungs. Finally, the muscles that control your lungs stop working and you die.
So, the key to living with ALS is to keep breathing. (Actually, that’s pretty much the key to everything in life, isn’t it, when you get right down to it?)
This is why us those of us whose symptoms start in the bulbar region are expected to check out faster than those whose symptoms start in the limbs. We’re already half-way home. However, if you survive long enough with either type, it spreads all over your body, so it makes no nevermind.
Naturally, being medical, it’s a lot more complicated than I have indicated. There are upper motor neurons and lower motor neurons, and telling them apart is a lot like telling Sunni from Shia, which I can do if you give me a few minutes, but I always have to think it through.
The upper motor neurons control muscle atrophy, I know that, and the lower control other things, which I can’t remember offhand, but it doesn’t work the way you’d think it would work. (You’d think upper motor neurons would control the upper part of the body, wouldn’t you? Duh. But, noooooo. That’s much too logical for life on planet Earth.)
There are scads of diseases that mimic ALS, and some of them are treatable, so it’s important to figure out what you’ve got, in case they can do something about it, besides pat you on the head and say, “There, there.” I’m on my fourth diagnosis in 2½ years: first stroke, then Progressive Supranuculear Palsy (don’t ask) (actually, it has something to do with Mad Cow, and I’d like to once again remind you that I’ll make all the smart-ass remarks that are necessary, thank you veddy much), then Myasthenia Gravis, and now ALS.
Diseases that mimic ALS, in addition to the above, are Progressive Bulbar Palsy, Progressive Pseudobulbar Palsy, and on and on and on ... it’s all just one big mess up there in your brain.
Even neurologists can’t tell them apart sometimes. Sometimes, they just wait and see what you die of, then pretend they knew all along.
So, now you know. Run along and play.
Remember, this is a blog not a doctoral dissertation, so, no, I’m not going to cite my sources. Does Drudge cite his sources? We’re on the Internet. You can look it up.
Any estimate of how long you live with ALS is probably an urban legend. In fact, I have recently learned of one woman with bulbar-onset ALS who is alive nine years later. Which is longer than I’d planned to live even without ALS. And look at Stephen Hawking.
So ... in many places, you’ll read that if you get ALS you’re going to die in ________ (fill in the blank) months/years, but all estimates are basically a bunch of hooey, because some people go fast and some people go slow, it can all speed up or slow down, and no one can predict who’s gonna do what when.
Which doesn’t stop anybody from predicting who’s gonna do what when.
But, just this once, I will make an exception to my no-citation rule, in this case concerning the “18 months to live” statement in my previous blog. In addition to what I learned in “Bulbar Onset 101” in my Google School of Medicine studies, I do have another authoritative source, although this particular source is probably hooey, too. In fact, it may be the hooiest of them all. Neurologist No. 3 (out of seven so far), told me a few months ago that I couldn’t possibly have ALS, because if I did, “You’d be six feet under by now. Heh-Heh.”
That is a direct quote, including the Heh-Heh. He chuckled complacently when he announced that, apparently expecting me to appreciate his wit as much as he did. Leading me to conclude that some neurologists are just sadists who couldn’t get into dental school.
(I tried to work “sleazy trial lawyers” and “crooked accountants” into the last sentence, too, to see how many professions I could insult in one breath, but couldn’t manage it.) (Not that I’m counting sadism as a profession. I think of it as more of a hobby, albeit one that is favored by some professionals more than others.)
Now, Neurologists 5, 6, and 7 have agreed that it is ALS. (I’ll leave out Neurologist No. 4, the nicest doctor I’ve ever met, who thought it might or might not not be ALS, he wasn’t sure . . . he thought maybe something else was going on . . . and admitted right out loud that he wasn’t sure! He goes straight into the Neurological Honesty Hall of Fame.)
Here’s how it works (or in the case of ALS, doesn’t work). Motor neurons in the brain that control muscular movements slowly die. The muscles they control grow weak and eventually atrophy. Most cases of ALS (75% ... you can look it up) start with the limbs. Your hands (or arms, or legs) grow weak, and you gradually lose the ability to use them.
After a while, usually a few years, the process spreads to what is called the “bulbar” region . . . the area of the brain that controls speech, swallowing, and breathing . . . and this is when things really go south. You can’t swallow liquids, you choke a lot, and sometimes when you do swallow, stuff gets into your lungs instead of your stomach, which is Not a Good Thing. You start slurring words, and eventually your speech become unintelligible. (This is where I’m at, and for those who know me, please no comments about how I was never too intelligible to begin with, so what am I complaining about.) Eventually, you lose your voice all together, then maybe you get pneumonia from the gunk in your lungs. Finally, the muscles that control your lungs stop working and you die.
So, the key to living with ALS is to keep breathing. (Actually, that’s pretty much the key to everything in life, isn’t it, when you get right down to it?)
This is why us those of us whose symptoms start in the bulbar region are expected to check out faster than those whose symptoms start in the limbs. We’re already half-way home. However, if you survive long enough with either type, it spreads all over your body, so it makes no nevermind.
Naturally, being medical, it’s a lot more complicated than I have indicated. There are upper motor neurons and lower motor neurons, and telling them apart is a lot like telling Sunni from Shia, which I can do if you give me a few minutes, but I always have to think it through.
The upper motor neurons control muscle atrophy, I know that, and the lower control other things, which I can’t remember offhand, but it doesn’t work the way you’d think it would work. (You’d think upper motor neurons would control the upper part of the body, wouldn’t you? Duh. But, noooooo. That’s much too logical for life on planet Earth.)
There are scads of diseases that mimic ALS, and some of them are treatable, so it’s important to figure out what you’ve got, in case they can do something about it, besides pat you on the head and say, “There, there.” I’m on my fourth diagnosis in 2½ years: first stroke, then Progressive Supranuculear Palsy (don’t ask) (actually, it has something to do with Mad Cow, and I’d like to once again remind you that I’ll make all the smart-ass remarks that are necessary, thank you veddy much), then Myasthenia Gravis, and now ALS.
Diseases that mimic ALS, in addition to the above, are Progressive Bulbar Palsy, Progressive Pseudobulbar Palsy, and on and on and on ... it’s all just one big mess up there in your brain.
Even neurologists can’t tell them apart sometimes. Sometimes, they just wait and see what you die of, then pretend they knew all along.
So, now you know. Run along and play.
Monday, June 23, 2008
Put Your Own Baseball Metaphor Here
I thought the worst thing I would ever hear from a doctor was the time I was lying in the operating room in that blissful twilight state they put you in for a routine angiogram, and, in the middle of the procedure, I heard the surgeon say, “Oops.”
And I thought to myself as everything went black, “This does not bode well.”
That was two years ago. But in May, as I sat on the edge of an examining table ready to make a run for the parking lot after several hours of electric shocks and needle pokes all over my body, a neurologist topped it: “You’ve got Lou Gehrig’s Disease.”
Lou Gehrig’s Disease. Motor Neuron Disease (MND). Also known as ALS — amyotrophic lateral sclerosis: I can’t spell it, can’t pronounce it, and absolutely don’t want it anywhere near my person.
If I hadn’t immediately started bawling my head off, I would have explained to him nicely that I am not the ALS type. It is much too melodramatic and exotic for me. It clearly requires much more character and inner strength than I’m capable of dredging up. I’m more the heart attack type. Or the coming-in-10th-in-a-20-car-pile-up on-the-405 type. Or the leprosy type, for God’s sake, where your fingers and nose fall off and you become so yukky they make you live on a tropical island for the rest of your life.
If I absolutely have to die (and I always figured medicine would solve the death issue by the time it was my turn; in fact, I’ve been counting on it) I figured I’d die of something ordinary, quick, and painless. My overall plan had been to feel great for 70- or 80-some years then abruptly keel over. Or even better, get a great night’s sleep and just keep going from there.
I never anticipated getting something incurable, untreatable, lingering, and paralyzing, which robs you of your ability to move, speak, eat, chew, swallow, and breathe, but which—just for laughs—forces you to be completely aware of everything that is happening to you at all times.
Also, if I hadn’t been bawling so hard at that moment, while counselors patted my shoulders and piled informational pamphlets and inspirational books on my lap, I could have at least come up with the snappy rejoinders I thought of a few weeks later, when the shock started wearing off. Such as: “Lou Gehrig’s Disease? Does this mean I can finally hit a major league fast ball?”
(For those of you under 50, the disease is named for Lou Gehrig, a great NY Yankees baseball player and teammate of Babe Ruth, who contracted ALS at the pinnacle of his career, retired from baseball in 1939 when he began losing the use of his limbs, and died two years later in the state described above.)
(Actually, I’m not quite old enough to remember him either, but I saw the movie.)
But I digress. Every case of ALS is different, and the cause of it is a mystery. So, I’m not sure what all to expect, other than it’s downhill all the way, and ... as I accurately surmised at the “Oops” moment ... this does not bode well.
So, I figured I might as well join the rest of the human race and start blogging to kill a little time, since time is busily returning the favor.
The first thing I did when I got home from the clinic was jump on Google and check out Catholic funerals. My husband is a Catholic and I’m not, and I wasn't sure how it worked. I think he and I should be buried together, as I don’t trust him to make it through the afterlife without me there giving instructions. Turns out, the church does allow non-Catholics to be buried with Catholic family members, which I think is very nice. Whew! One down.
Next, I Googled crematoriums. What a rip-off. Nuff said. Nevertheless, it turns out I can afford to die, although just barely.
Next, I clearly needed to write my obit ASAP. I titled it, “ ‘30 Rock’ Fan Dies.” I thought maybe that might get Tina Fey to my funeral, or at least Jack McBrayer. (Alec Baldwin is clearly beyond my reach.) By the time I had typed about 50 column inches of my life story, however, I realized that publishing my obit was going to cost more than my funeral and maybe I’d better leave out the part about that snot in 6th grade who ruined my life for two weeks. Once I started cutting out the really good parts, it got pretty boring and the obit project withered on the vine.
Much as I am doing.
But with the essentials out of the way, I returned to my alma mater (not to brag, but I have an MD degree from the Google School of Medicine) and Googled “ALS bulbar onset,” and discovered to my horror that my life expectancy is in the range of 18 months, give or take 10 minutes.
And I am already at month 28 of my symptoms, way past my expiration date. This whole thing keeps getting better and better.
Then I realized ... OMG ... I’m going to die before “Lost” ends. I’ll never know how it comes out.
Shit.
And I thought to myself as everything went black, “This does not bode well.”
That was two years ago. But in May, as I sat on the edge of an examining table ready to make a run for the parking lot after several hours of electric shocks and needle pokes all over my body, a neurologist topped it: “You’ve got Lou Gehrig’s Disease.”
Lou Gehrig’s Disease. Motor Neuron Disease (MND). Also known as ALS — amyotrophic lateral sclerosis: I can’t spell it, can’t pronounce it, and absolutely don’t want it anywhere near my person.
If I hadn’t immediately started bawling my head off, I would have explained to him nicely that I am not the ALS type. It is much too melodramatic and exotic for me. It clearly requires much more character and inner strength than I’m capable of dredging up. I’m more the heart attack type. Or the coming-in-10th-in-a-20-car-pile-up on-the-405 type. Or the leprosy type, for God’s sake, where your fingers and nose fall off and you become so yukky they make you live on a tropical island for the rest of your life.
If I absolutely have to die (and I always figured medicine would solve the death issue by the time it was my turn; in fact, I’ve been counting on it) I figured I’d die of something ordinary, quick, and painless. My overall plan had been to feel great for 70- or 80-some years then abruptly keel over. Or even better, get a great night’s sleep and just keep going from there.
I never anticipated getting something incurable, untreatable, lingering, and paralyzing, which robs you of your ability to move, speak, eat, chew, swallow, and breathe, but which—just for laughs—forces you to be completely aware of everything that is happening to you at all times.
Also, if I hadn’t been bawling so hard at that moment, while counselors patted my shoulders and piled informational pamphlets and inspirational books on my lap, I could have at least come up with the snappy rejoinders I thought of a few weeks later, when the shock started wearing off. Such as: “Lou Gehrig’s Disease? Does this mean I can finally hit a major league fast ball?”
(For those of you under 50, the disease is named for Lou Gehrig, a great NY Yankees baseball player and teammate of Babe Ruth, who contracted ALS at the pinnacle of his career, retired from baseball in 1939 when he began losing the use of his limbs, and died two years later in the state described above.)
(Actually, I’m not quite old enough to remember him either, but I saw the movie.)
But I digress. Every case of ALS is different, and the cause of it is a mystery. So, I’m not sure what all to expect, other than it’s downhill all the way, and ... as I accurately surmised at the “Oops” moment ... this does not bode well.
So, I figured I might as well join the rest of the human race and start blogging to kill a little time, since time is busily returning the favor.
The first thing I did when I got home from the clinic was jump on Google and check out Catholic funerals. My husband is a Catholic and I’m not, and I wasn't sure how it worked. I think he and I should be buried together, as I don’t trust him to make it through the afterlife without me there giving instructions. Turns out, the church does allow non-Catholics to be buried with Catholic family members, which I think is very nice. Whew! One down.
Next, I Googled crematoriums. What a rip-off. Nuff said. Nevertheless, it turns out I can afford to die, although just barely.
Next, I clearly needed to write my obit ASAP. I titled it, “ ‘30 Rock’ Fan Dies.” I thought maybe that might get Tina Fey to my funeral, or at least Jack McBrayer. (Alec Baldwin is clearly beyond my reach.) By the time I had typed about 50 column inches of my life story, however, I realized that publishing my obit was going to cost more than my funeral and maybe I’d better leave out the part about that snot in 6th grade who ruined my life for two weeks. Once I started cutting out the really good parts, it got pretty boring and the obit project withered on the vine.
Much as I am doing.
But with the essentials out of the way, I returned to my alma mater (not to brag, but I have an MD degree from the Google School of Medicine) and Googled “ALS bulbar onset,” and discovered to my horror that my life expectancy is in the range of 18 months, give or take 10 minutes.
And I am already at month 28 of my symptoms, way past my expiration date. This whole thing keeps getting better and better.
Then I realized ... OMG ... I’m going to die before “Lost” ends. I’ll never know how it comes out.
Shit.
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