Can't type very well so this will be short, I broke my upper arm last Saturday when I fell. I stepped on a cat's tail. Spent about 4 hours on the floor waiting for herself to come home from an event in town then 8 hours in the ER and won't get the bone set until day after tomorrow. Had to put some other things on hold like physical therapy. Lessons learned.
Showing posts with label What condition my condition is in. Show all posts
Showing posts with label What condition my condition is in. Show all posts
Tuesday, June 6, 2023
Tuesday, February 28, 2023
1949
For some reason or no reason at all, the year 1949 popped into my consciousness the other day, and now it's like a brain worm and won't go away. I'll get to it, but first I have a thing or two to say about household matters that have been giving me grief.
Yay! The heat works again. I've been jiggering and poking the main heater in the living room for weeks after it stopped working just like that. Got a new thermostat ( thanks to Ms Ché who found one at the hardware store the next town over ) and installed it. It didn't seem to work at first, then about 24 hours later, ta da, the heat went on, and it seemed to be fine for a few days when it started acting up again and then stopped. I rejiggered the thermostat and the heater (a Williams console, 50,000 btu) started working again. Hm. Then a week or so later, boom, no heat. Why? Don't know.
Doing some research, I discovered "You need to clean it out every few months, dude." Oh? OK, so I looked inside and behind it. It has never been cleaned out since it was installed in I believe 2005 or 2006. Lots of dust, lint, cat hair, yada yada in there. Hm. It's kind of like the blower with the burnt out bearings I found out long after the fact I was supposed to oil every two months or so. OK. I didn't get an owner's manual with the heater so none of this was known by me. I found one online though the other day, and I saw there was quite a maintenance checklist that I previously knew nothing about. OK.
So I managed to get the top off the thing and put the vacuum hose down into the guts of it and got most of the visible dust and fur off the parts I could reach, got the top back on and set the thermostat at 72° and voila! Fired right up, and has been working just fine ever since. Of course the blower doesn't work. I could get a new one, but I couldn't install it to save my life. [It would require detaching the heater from the chimney, moving the whole unit into the room to allow access to the rear panel behind which the blower is installed, removing the old nonfunctioning blower and installing a new one, then reattaching the heater to the chimney and hoping for the best]. And I discovered the oil ports I was supposed to be using all those years were basically unreachable without turning the whole unit around -- ie, going through the same detach/spin around/reattach measures as required to replace the blower. Nope. Not gonna happen.
But thinking about it, we prolly should have a wood-stove instead. Most folks around here have one or more to heat their houses while we continue to rely on the main gas heater and several small electric ones for the bedrooms and bathroom. What I've thought of is replacing the main heater with a wood-stove and adding mini-split units (that heat and cool) to the bedrooms, kitchen and the living room. Well, that's a thought.
In the first part of 1949 I was living in Iowa in my father's ancient house, parts of which dated back to 1849. There was a coal furnace in the basement which heated the house through long pipes and registers. I think they called the coal furnace "the octopus" because of all the pipes coming off of it.
I remember the smell. Coal burning has a very distinctive odor, much as gas does. It's sharp to my nose, and I don't like it.
But I remember the house was warm. Maybe overheated. During a cold Iowa winter, temperatures can often be in the single digits or below zero outside. If you're out in it for any length of time, you kind of get used to it, though it might be uncomfortable. Moving from outside to inside, a normally heated house might be 72° but it will feel way warmer to you. Uncomfortably so.
My father's house was kept warm enough at least to my way of looking at it as an infant. Later I would develop a real anxiety and even anger about being cold, but it was due to... other things.
In May of 1949, my parents were divorced and I was bundled into the back of the 1942 Packard Clipper that my mother got in the divorce settlement from my father (along with $1000 and a bunch of other stuff) and we set off for California.
My mother hated Iowa, hated my father's family -- who happily returned the favor -- and from time to time hated my father. Other times, they were the best of buddies.
I really don't know how long it took to get to California. There were no Interstate freeways, after all. Just getting to Route 66 from my father's hometown must have been a challenge. I'm thinking it must have taken close to or more than a week for the whole trip. I remember rolling around in the back of the car, falling off the back seat more than once, and actually having a great time. I loved to ride in the car -- unless it was cold. And in May, it wasn't.
When we got to California -- to my mother's hometown near the Coast -- the struggle began to find a place to live. I remember a little house, Spanish style, tile roof on the porch, prolly from the '20s or early '30s. I think it only had one bedroom and my sister slept on the couch in the living room. I was in a crib in my mother's room. But where did the furniture come from? Mystery. It must have been bought with part of that $1000 my mother carried in her purse, right? I suppose.
The furniture was mostly maple in Early American style. Very popular at the time. I still have some of that early stuff -- a bookcase and drop leaf table. The furniture was simple, inexpensive, and I suspect she bought it because it was in stock and could be delivered promptly. Maybe from Sears. Montgomery Ward?
I remember the lamps were glass kerosene ones that had been converted to electricity with a kind of bulb holder and cord on a cork that you shoved into the wick/fill hole of the lamp, and my mother -- or was it my sister? -- put frilly shades on them. Very authentic.
My crib was white and I slept in it until I was five or six. I don't remember having a real bed before then. But I may not remember correctly. Given how often my memory cells misfire these days, I may not be remembering at all. Yet there's something there, something genuine. I remember a lot. I misremember some. And I don't remember many things at all.
1949, I shouldn't remember anything, but I do. Quite a lot, still. Even before I could walk.
And now that I have relearn walking, and I'm still as unsteady on my feet as an infant, maybe memories of 1949 are just right.
Monday, March 26, 2018
Some Thoughts
Of course I've been paying attention to events, but there's such a level of chaos on so many fronts it's hard to know what's worth the time to explore more and what's just "entertainment."
1) Propaganda. We are immersed in propaganda, sales pitches, and false narratives from the media, politicians, commercial interests and others all the time. We know this, don't we? As a rule, the truth of things beyond our immediate reference point is rarely knowable to most of us. Yes, even science and scholarly research can produce false and misleading information.
Thus, it is always wise to be skeptical about what we are told by authority or somebody trying to sell us something. Not all of it is false, but much of everything we're told is framed to make us believe certain things in certain ways that may not have anything to do with reality.
The Russia Thing has been all about propaganda and the effective use of propaganda for political objectives. There's been an effort to blame-cast Russian propaganda for electing Trump -- which to me has always been simply stupid. Incomprehensibly stupid.
There was Russian propaganda at play, but there was lots and lots of other propaganda coming from many, many sources during the election campaign and afterwards. We used to joke about the Macedonian teenagers spreading false stories about Hillary on Facebook and Twitter and various websites. Yes? So? Apparently there were whole troll farms running internet propaganda campaigns from many locations in and out of the USofA, a good deal of it automated, and yes, they were effective among those particularly vulnerable to what they see, read, and hear on the internet.
I think far too much has been made of anti-Hillary, pro-Trump propaganda, however.Trump won the presidency not because the American people elected him -- far from it -- but because the Electoral College elected him based on 70,000-80,000 unverifiable votes in three states. The voters chose Hillary by more than 3,000,000 votes overall, so it's simply false to say that a majority of the American People elected Trump. They didn't.
The propaganda of the campaign was effective in disparaging Hillary mostly among those already so inclined. There was no comprehensive or comparable propaganda effort to disparage Trump. That may seem strange given how over the top some of the denunciations of Trump have been since the election, but consider this:
Media gave him and still gives him nearly limitless coverage for anything he says or does or for pretty much anything anyone else says about him. The circus sells. So, they cover it obsessively. The internet has come to set the standard narrative about things such as Trump, and media falls into line. If Trump is trending, which he always is, the media covers him and everyone -- pretty much -- around him. It's a goon show and they love it. Can't get enough of it. It doesn't really matter what kind of coverage he gets, positive or negative, so long as he gets coverage. If that ever stopped, on the other hand...
There has never been any comparable level of coverage for Hillary or Democrats in general, something that once was noted regularly.
What this means is that Rs and now Trump are able to sell their product almost without impediment whereas in so many cases, Ds can't even come up with a product to sell. But even if they did, their sales technique, indeed, their product itself, wouldn't differ much from that of the Rs. The propaganda and the lies would be nearly indistinguishable. What foreign interests and internet meme generators, fake news purveyors, and what have you do or don't do don't really matter all that much -- they are all part of the game being played. Our rulers lie to us. All. The. Time. Some do it more subtly that others, but they all do it.
That Russian and other foreign and domestic interests exploited these characteristics of American politics to sow discord and "influence the election" should be taken for granted. That one or another campaign was entangled with these interests and activities should be seen as the way the game is played.
What should be clear by now, though, is that Americans are way too vulnerable to these tactics and too many of them lack the tools and skill to sort through the garbage. They believe what they believe and whoever/whatever confirms it. Thus, propaganda is more effective than it should be.
2) Gunz. The nightmare continues. I was impressed by the size of the crowds at Saturday's marches for Our Lives. Sadly, however, we know that marches per se, no matter their size, are routinely ignored by Our Rulers, simply because they can and they want to stick it to the Rabble one more time.
On top of the issue of school massacres, there is obviously still a problem with police executions and murders, street mayhem and murder in various cities, and the ridiculous and deadly insanity of the gun lobby's constant demands for more gunz no matter what.
The thing of it is, despite the absolute number of gunz in private hands, fewer and fewer Americans own them. Ponder: something like half the gunz are in the hands of 3% or so of the population. Only 30% or so of households have a gun, and the number is declining. The rest -- apparently -- are in private arsenals like the one maintained by the Las Vegas mass murderer, or... well, something is going on with those arsenals.
There are always so many gunz available in the black market. There are always so many gunz available on the legal market too. Dude in Florida could walk in to his neighborhood gun shop and buy anything he wanted as long as he had the bucks -- which he did somehow -- and could pass the so called "background check" which didn't pick up any of his sketchier behavior and threats. No problem. It's a puzzlement that all of the reports and calls and tips and so on about him were apparently ignored by layers of authorities who were informed and chose to do nothing. If he were Muslim or black or some other disfavored minority, who knows, he might have been tortured on the rack and thrown in the hole for the rest of his life, but apparently, he was a favored minority.
There is some dispute over whether he is an ethnic Hispanic. He was apparently adopted by a Hispanic family and was given a Hispanic name, but that he is not ethnically Hispanic. Most reports say he's "white." Beyond that, it's a muddle.
But despite being a double orphan, he had plenty of money to buy gunz and he did. This happens with some frequency among the mass murder contingent.
I think we can admit that gunz are far easier to get than they need to be, and that the failure of Our Rulers to do anything about it -- except make it easier -- represents policy. A policy of bloodshed as a corrective for the Rabble, keeping them in fear and thus relatively tame. It's not pleasant, but it works.
Thus the kids must fail in their crusade, and they must be seen to fail. We'll see. Even if/when they manage to expel the electeds who insist on the policy of practically unlimited gun access and periodic mass murder, there is more than a little suspicion that the policy won't change much. Because it is effective in keeping the Rabble in its place, fearful, powerless and under control.
We'll see.
3) Another bimbo eruption. Oh dear. The Storm(y) has hit. Of course no one is shocked -- least of all I imagine Melania. But trying to take out Trump over this sort of thing -- no matter how many women come forth (up to 27 at last count) -- seems somewhat silly. I think Clinton showed that you don't get rid of a president because of his sex life. You just don't. It's ridiculous. But here we are, going through nearly the same thing with Trump as with Clinton, and it's deja vu all over again.
Please.
The entertainment value is high, of course, other people's sex lives being endlessly entertaining, but that's about all it is. (Personally, it all makes me kind of ill; I really don't want to know and don't much care.)
But entertainment in these cases always has a purpose. The purpose is to keep you 'n' me distracted while something else, much more important to Our Rulers, is taking place.
What's important to Our Rulers are the policies being enacted: tax cuts, regulatory relief, theft of public resources and wealth, wars and aggression against designated and ever changing enemies, that kind of thing.
That's going on at an accelerated pace no matter the dazzling show.
There's much more of course.
-----------------------------------------------------
I've started a whole bunch of seeds, and have more to start during the next week or so. My health is better but not fully up to par. Will probably be starting physical therapy soon. Ms Ché is getting her BFA in Creative Writing in May and then starting the MFA program in August. She will not be the oldest graduate, but close to it. And she's having the time of her life!
In the midst of all the hoo-hah, there's always something else again.
I may take another long break over the next several months.
We'll see how things settle out.
1) Propaganda. We are immersed in propaganda, sales pitches, and false narratives from the media, politicians, commercial interests and others all the time. We know this, don't we? As a rule, the truth of things beyond our immediate reference point is rarely knowable to most of us. Yes, even science and scholarly research can produce false and misleading information.
Thus, it is always wise to be skeptical about what we are told by authority or somebody trying to sell us something. Not all of it is false, but much of everything we're told is framed to make us believe certain things in certain ways that may not have anything to do with reality.
The Russia Thing has been all about propaganda and the effective use of propaganda for political objectives. There's been an effort to blame-cast Russian propaganda for electing Trump -- which to me has always been simply stupid. Incomprehensibly stupid.
There was Russian propaganda at play, but there was lots and lots of other propaganda coming from many, many sources during the election campaign and afterwards. We used to joke about the Macedonian teenagers spreading false stories about Hillary on Facebook and Twitter and various websites. Yes? So? Apparently there were whole troll farms running internet propaganda campaigns from many locations in and out of the USofA, a good deal of it automated, and yes, they were effective among those particularly vulnerable to what they see, read, and hear on the internet.
I think far too much has been made of anti-Hillary, pro-Trump propaganda, however.Trump won the presidency not because the American people elected him -- far from it -- but because the Electoral College elected him based on 70,000-80,000 unverifiable votes in three states. The voters chose Hillary by more than 3,000,000 votes overall, so it's simply false to say that a majority of the American People elected Trump. They didn't.
The propaganda of the campaign was effective in disparaging Hillary mostly among those already so inclined. There was no comprehensive or comparable propaganda effort to disparage Trump. That may seem strange given how over the top some of the denunciations of Trump have been since the election, but consider this:
Media gave him and still gives him nearly limitless coverage for anything he says or does or for pretty much anything anyone else says about him. The circus sells. So, they cover it obsessively. The internet has come to set the standard narrative about things such as Trump, and media falls into line. If Trump is trending, which he always is, the media covers him and everyone -- pretty much -- around him. It's a goon show and they love it. Can't get enough of it. It doesn't really matter what kind of coverage he gets, positive or negative, so long as he gets coverage. If that ever stopped, on the other hand...
There has never been any comparable level of coverage for Hillary or Democrats in general, something that once was noted regularly.
What this means is that Rs and now Trump are able to sell their product almost without impediment whereas in so many cases, Ds can't even come up with a product to sell. But even if they did, their sales technique, indeed, their product itself, wouldn't differ much from that of the Rs. The propaganda and the lies would be nearly indistinguishable. What foreign interests and internet meme generators, fake news purveyors, and what have you do or don't do don't really matter all that much -- they are all part of the game being played. Our rulers lie to us. All. The. Time. Some do it more subtly that others, but they all do it.
That Russian and other foreign and domestic interests exploited these characteristics of American politics to sow discord and "influence the election" should be taken for granted. That one or another campaign was entangled with these interests and activities should be seen as the way the game is played.
What should be clear by now, though, is that Americans are way too vulnerable to these tactics and too many of them lack the tools and skill to sort through the garbage. They believe what they believe and whoever/whatever confirms it. Thus, propaganda is more effective than it should be.
2) Gunz. The nightmare continues. I was impressed by the size of the crowds at Saturday's marches for Our Lives. Sadly, however, we know that marches per se, no matter their size, are routinely ignored by Our Rulers, simply because they can and they want to stick it to the Rabble one more time.
On top of the issue of school massacres, there is obviously still a problem with police executions and murders, street mayhem and murder in various cities, and the ridiculous and deadly insanity of the gun lobby's constant demands for more gunz no matter what.
The thing of it is, despite the absolute number of gunz in private hands, fewer and fewer Americans own them. Ponder: something like half the gunz are in the hands of 3% or so of the population. Only 30% or so of households have a gun, and the number is declining. The rest -- apparently -- are in private arsenals like the one maintained by the Las Vegas mass murderer, or... well, something is going on with those arsenals.
There are always so many gunz available in the black market. There are always so many gunz available on the legal market too. Dude in Florida could walk in to his neighborhood gun shop and buy anything he wanted as long as he had the bucks -- which he did somehow -- and could pass the so called "background check" which didn't pick up any of his sketchier behavior and threats. No problem. It's a puzzlement that all of the reports and calls and tips and so on about him were apparently ignored by layers of authorities who were informed and chose to do nothing. If he were Muslim or black or some other disfavored minority, who knows, he might have been tortured on the rack and thrown in the hole for the rest of his life, but apparently, he was a favored minority.
There is some dispute over whether he is an ethnic Hispanic. He was apparently adopted by a Hispanic family and was given a Hispanic name, but that he is not ethnically Hispanic. Most reports say he's "white." Beyond that, it's a muddle.
But despite being a double orphan, he had plenty of money to buy gunz and he did. This happens with some frequency among the mass murder contingent.
I think we can admit that gunz are far easier to get than they need to be, and that the failure of Our Rulers to do anything about it -- except make it easier -- represents policy. A policy of bloodshed as a corrective for the Rabble, keeping them in fear and thus relatively tame. It's not pleasant, but it works.
Thus the kids must fail in their crusade, and they must be seen to fail. We'll see. Even if/when they manage to expel the electeds who insist on the policy of practically unlimited gun access and periodic mass murder, there is more than a little suspicion that the policy won't change much. Because it is effective in keeping the Rabble in its place, fearful, powerless and under control.
We'll see.
3) Another bimbo eruption. Oh dear. The Storm(y) has hit. Of course no one is shocked -- least of all I imagine Melania. But trying to take out Trump over this sort of thing -- no matter how many women come forth (up to 27 at last count) -- seems somewhat silly. I think Clinton showed that you don't get rid of a president because of his sex life. You just don't. It's ridiculous. But here we are, going through nearly the same thing with Trump as with Clinton, and it's deja vu all over again.
Please.
The entertainment value is high, of course, other people's sex lives being endlessly entertaining, but that's about all it is. (Personally, it all makes me kind of ill; I really don't want to know and don't much care.)
But entertainment in these cases always has a purpose. The purpose is to keep you 'n' me distracted while something else, much more important to Our Rulers, is taking place.
What's important to Our Rulers are the policies being enacted: tax cuts, regulatory relief, theft of public resources and wealth, wars and aggression against designated and ever changing enemies, that kind of thing.
That's going on at an accelerated pace no matter the dazzling show.
There's much more of course.
-----------------------------------------------------
I've started a whole bunch of seeds, and have more to start during the next week or so. My health is better but not fully up to par. Will probably be starting physical therapy soon. Ms Ché is getting her BFA in Creative Writing in May and then starting the MFA program in August. She will not be the oldest graduate, but close to it. And she's having the time of her life!
In the midst of all the hoo-hah, there's always something else again.
I may take another long break over the next several months.
We'll see how things settle out.
Monday, June 26, 2017
The Economics of Chronic Illness
Our income is too high to qualify for Medicaid, but if we could, Ms. Ché and I would receive rather strictly rationed care for our conditions at no out of pocket cost -- or very little cost -- to us.
Our conditions (she with diabetes and a number of chronic conditions that come from it; me with RA and a number of complications) are rather startlingly expensive to treat, starting with medications which, if we had to pay rack rates for them would run about $4,000 a month. Her's run approximately $1,200 a month at full price, mine around $2,800.
Thankfully, we don't pay that. She gets hers at no charge from IHS, and even though I am now in the Medicare Part D donut hole, my meds are expected to cost me only $600 or $700 a month until my total drug spending for the year tops $3,700 which will then trigger catastrophic coverage (how reassuring) which I understand will mean I receive future medications at no out of pocket charges -- though I'm not entirely sure about that. Co-pays before reaching the donut hole usually ran $10 to $45 a prescription.
My most expensive medication is mycophenolate; hers is insulin. Mycophenolate is prescribed to control my ILD (interstitial lung disease, ie: pulmonary fibrosis) caused by RA -- which is not to say I don't have other lung problems thanks to years of smoking cigarettes (stopped about 20 years ago).
In the original capsule form I was taking it, mycophenolate was running about $900 a month at full price. My doctor changed to tablet form when I told her how much it cost, and that's running about $500 a month I think (I haven't got a complete statement yet). The other medications I take for RA and other issues run another $2,300 or so a month. Wow. That's for nine other prescriptions.
Then there are the infusions which are supposed to control or even suppress the RA to the point where I go into complete remission. So far so good. I've had two infusion treatments, the last one a month ago, and since then, I have had only minor joint pain and discomfort, and as a rule, whenever the pains come on, they self-correct within minutes or an hour. It's remarkable compared to what I was going through -- days of intense pain week after week that apparently nothing would abate apart from -- on occasion -- heavy duty opioids which I'd rather not take. (Gee, ya think???)
Shall we talk about the cost of the infusion treatment? Sure, let's talk about it.
I just got the bill for the infusions in May: total is $46,583 for the two infusions (and I may have to do this again in six months.) Most of the cost -- $42,562 -- is for the Rituxan (I think I received 5mg of the specific drug in an IV drip each time.)
I'm.... stunned.
This is literally ten times what I was told the treatment would cost.
I'm flabbergasted. Who wouldn't be? My co-pay -- at this point, as adjustments are still possible -- is $1,898, whereas I was told it would be between $500 and $900 depending on how much "insurance" paid, and it was possible there would be no co-pay at all if "insurance" picked up the whole bill.
Insurance being a Medicare Advantage plan. OK then.
$46,583 for 10mg of Rituxan. It seems to be working, so I'm not complaining about that, not at all. But the cost? What the Feuk?
This is a cancer drug that is used for RA in particularly difficult cases (such as mine) that aren't responding well or at all to more conventional treatments. What happened in my case was that my rheumatologist tried a variety of "standard" treatment medications, and they all ultimately failed. For the three months leading up to the infusion treatments, I was experiencing repeated RA flares, essentially every week, each one lasting five days or more, during which I had terrible, debilitating joint pains which none of my usual medications seemed to control. I wound up in the ER due to sciatic pain which was alleviated with a muscle relaxant. But the RA issue remained, and doing something outside the usual treatment seemed to be required.
I agreed to the infusions because my rheumatologist seemed to have run out of options. My condition was clearly getting worse, and medications weren't working.
So. Infusion it was to be. I asked about cost a number of times, and it was difficult to get a straight answer. It all depended on factors that couldn't be known in advance. Ultimately, I was told that the standard rate for treatment was $4,600. How much I would be liable for would depend on how much "insurance" paid, which could vary between 90% and 100% depending. So I should be liable for no more than a $460 co-pay, and I could conceivably owe nothing.
Well, that's not even in the same ball park with what I was billed. Not even remotely.
First, of course, the treatment cost is not $4,600, it's over $46,000 which -- if it was known -- was concealed from me and apparently from the nurses and patient advocates I was trying to get information from.
Second, "insurance" has paid nothing toward the cost. Instead, there was an unexplained "adjustment" of $44,584, which is how my co-pay of $1,898 is arrived at.
What I suspect is happening here is that -- like so many other hospital billing practices -- the hospital is presenting an absurdly high initial bill for payment by "insurance." I was told the initial bill would go to Presbyterian Senior Care which would then bill Medicare for my treatment, and the amount I would be charged would depend on how much Medicare paid. But that doesn't seem to be the case.
In fact, nothing I was told seems to be the case.
At least at this point, it doesn't appear that "insurance" is involved at all, and I am being charged the "patients'" rate for treatment as if I'd come in off the street. But I don't know that that's the case because the billing practice is so opaque, and nobody seems to be able to penetrate it.
This is a very strange way to engage in economic practices, but it seems to be universal in the health care industry. It works for them. More or less. But it doesn't work for anybody else. It wasn't meant to, was it?
I'm not sure how to proceed at this point. I was talking to a friend yesterday who came over to pick up some tomato plants. The issue was, "Do I feel better?" I do, much. Pain is almost completely gone, and that counts for a LOT. Compared to where I was before I started Rituxan infusions, it's night and day.
Therefore: "whatever they charge is 'worth it', no?"
Pretty much.
Just wanted to get some of this down before I forgot.
UPDATE: I got a detailed breakdown of charges and who pays what today. I'm still going over it, but it makes somewhat more sense (well...) and I'll try to get into it in another post.
Our conditions (she with diabetes and a number of chronic conditions that come from it; me with RA and a number of complications) are rather startlingly expensive to treat, starting with medications which, if we had to pay rack rates for them would run about $4,000 a month. Her's run approximately $1,200 a month at full price, mine around $2,800.
Thankfully, we don't pay that. She gets hers at no charge from IHS, and even though I am now in the Medicare Part D donut hole, my meds are expected to cost me only $600 or $700 a month until my total drug spending for the year tops $3,700 which will then trigger catastrophic coverage (how reassuring) which I understand will mean I receive future medications at no out of pocket charges -- though I'm not entirely sure about that. Co-pays before reaching the donut hole usually ran $10 to $45 a prescription.
My most expensive medication is mycophenolate; hers is insulin. Mycophenolate is prescribed to control my ILD (interstitial lung disease, ie: pulmonary fibrosis) caused by RA -- which is not to say I don't have other lung problems thanks to years of smoking cigarettes (stopped about 20 years ago).
In the original capsule form I was taking it, mycophenolate was running about $900 a month at full price. My doctor changed to tablet form when I told her how much it cost, and that's running about $500 a month I think (I haven't got a complete statement yet). The other medications I take for RA and other issues run another $2,300 or so a month. Wow. That's for nine other prescriptions.
Then there are the infusions which are supposed to control or even suppress the RA to the point where I go into complete remission. So far so good. I've had two infusion treatments, the last one a month ago, and since then, I have had only minor joint pain and discomfort, and as a rule, whenever the pains come on, they self-correct within minutes or an hour. It's remarkable compared to what I was going through -- days of intense pain week after week that apparently nothing would abate apart from -- on occasion -- heavy duty opioids which I'd rather not take. (Gee, ya think???)
Shall we talk about the cost of the infusion treatment? Sure, let's talk about it.
I just got the bill for the infusions in May: total is $46,583 for the two infusions (and I may have to do this again in six months.) Most of the cost -- $42,562 -- is for the Rituxan (I think I received 5mg of the specific drug in an IV drip each time.)
I'm.... stunned.
This is literally ten times what I was told the treatment would cost.
I'm flabbergasted. Who wouldn't be? My co-pay -- at this point, as adjustments are still possible -- is $1,898, whereas I was told it would be between $500 and $900 depending on how much "insurance" paid, and it was possible there would be no co-pay at all if "insurance" picked up the whole bill.
Insurance being a Medicare Advantage plan. OK then.
$46,583 for 10mg of Rituxan. It seems to be working, so I'm not complaining about that, not at all. But the cost? What the Feuk?
This is a cancer drug that is used for RA in particularly difficult cases (such as mine) that aren't responding well or at all to more conventional treatments. What happened in my case was that my rheumatologist tried a variety of "standard" treatment medications, and they all ultimately failed. For the three months leading up to the infusion treatments, I was experiencing repeated RA flares, essentially every week, each one lasting five days or more, during which I had terrible, debilitating joint pains which none of my usual medications seemed to control. I wound up in the ER due to sciatic pain which was alleviated with a muscle relaxant. But the RA issue remained, and doing something outside the usual treatment seemed to be required.
I agreed to the infusions because my rheumatologist seemed to have run out of options. My condition was clearly getting worse, and medications weren't working.
So. Infusion it was to be. I asked about cost a number of times, and it was difficult to get a straight answer. It all depended on factors that couldn't be known in advance. Ultimately, I was told that the standard rate for treatment was $4,600. How much I would be liable for would depend on how much "insurance" paid, which could vary between 90% and 100% depending. So I should be liable for no more than a $460 co-pay, and I could conceivably owe nothing.
Well, that's not even in the same ball park with what I was billed. Not even remotely.
First, of course, the treatment cost is not $4,600, it's over $46,000 which -- if it was known -- was concealed from me and apparently from the nurses and patient advocates I was trying to get information from.
Second, "insurance" has paid nothing toward the cost. Instead, there was an unexplained "adjustment" of $44,584, which is how my co-pay of $1,898 is arrived at.
What I suspect is happening here is that -- like so many other hospital billing practices -- the hospital is presenting an absurdly high initial bill for payment by "insurance." I was told the initial bill would go to Presbyterian Senior Care which would then bill Medicare for my treatment, and the amount I would be charged would depend on how much Medicare paid. But that doesn't seem to be the case.
In fact, nothing I was told seems to be the case.
At least at this point, it doesn't appear that "insurance" is involved at all, and I am being charged the "patients'" rate for treatment as if I'd come in off the street. But I don't know that that's the case because the billing practice is so opaque, and nobody seems to be able to penetrate it.
This is a very strange way to engage in economic practices, but it seems to be universal in the health care industry. It works for them. More or less. But it doesn't work for anybody else. It wasn't meant to, was it?
I'm not sure how to proceed at this point. I was talking to a friend yesterday who came over to pick up some tomato plants. The issue was, "Do I feel better?" I do, much. Pain is almost completely gone, and that counts for a LOT. Compared to where I was before I started Rituxan infusions, it's night and day.
Therefore: "whatever they charge is 'worth it', no?"
Pretty much.
Just wanted to get some of this down before I forgot.
UPDATE: I got a detailed breakdown of charges and who pays what today. I'm still going over it, but it makes somewhat more sense (well...) and I'll try to get into it in another post.
Thursday, June 8, 2017
On Falling
Every time I visit the doctor -- lately several times a month -- I'm asked whether I've fallen in the last 90 days, and I've always said "No". Next time I will have to say "Yes," because the day before yesterday, I had a bad fall, and this morning, I can barely walk (though I think that's a consequence of an RA flare coming on as well as any lingering effects of the fall itself.)
It happened this way: Ms. Ché and I were talking the afternoon away in the house when I thunderstorm came up the way they've been doing almost every afternoon for weeks now. No big deal. Ms Ché got up to let a cat in and casually remarked, "Oh look, it's hailing!."
I said "Oh shit!" and got up. "The tomatoes!" We needed to cover them fast or they could be destroyed. One year, the hail pretty much destroyed everyone's tomatoes in the area. Our friend across the highway had a wonderful crop on the way; the hail not only destroyed her plants, it ruined all but a few of the tomatoes on the plants.
That year our plants were damaged but survived. The crop was minuscule, but at least there were a few.
This year's plants are still very young and quite fragile. They'e Cherokee Purple grown from seed, and we have way more plants than I thought would come through the various disasters of trying to grow tomatoes from seed at this altitude. Close to 100 plants at the moment are in various stages of growth, and some have been transplanted to containers scattered around the place and are growing well.
Hail, though, could mean the end of many of them. So we raced to get as many as we could under cover. As we did, the hail came down stronger and stronger, and as I headed back to the house get more covering, I tripped on a wire -- actually a section of chicken wire laid on the ground to keep the cats from using a patch of lawn as a toilet.
BAM! I fell hard on the gravel -- the rough gravel we use for some pathways -- on my knees, and the pain was amazing. I thought I had broken both knees. Ms Ché saw me down and hollering in pain, while the hail storm intensified. Oh doG, what to do now?
I asked her if she could help me get up, but that didn't work, so I sat there in pain while the hail pelted the both of us and we became soaked to the skin. I couldn't get up on my own, and I was pretty much convinced that at least one knee was shot, if not broken. After sitting there for a while, I asked Ms. Ché to bring over a couple of milk crates that we use to transport things around the place. She did, and with some effort, I was able to hoist my bottom onto the crates, and once there, I was able to slowly and gingerly get myself into an upright position -- with the help of a walker that Ms Ché brought from the studio.
Now what? Could I walk? I didn't know. But I tried one foot in front of the other and sure enough I was able to shuffle through the hail to the back door and make it up the steps and into the house. Whoo-hoo!
The pain in my knees was pretty bad, though, and slowly, I peeled out of my soaked duds. Both legs were pretty banged up from knee to ankle, the left one much more so than the right one. The left knee was quite bloody, and it looked like I'd done more than scrape the skin. I asked Ms Ché if she had any Bactine, and by golly she did. We sprayed it on the wounds.
And I sat for twenty minutes or so in my damp underwear, catching my breath and trying not to get overwrought.
Not a pretty picture.
Ms Ché was soaked, too, of course, but she tried to take it all in stride. I said, "Get into some dry things, I'll be all right." She went off to find something dry to put on while I continued to sit and contemplate my wounds. Apart from the scrapes and what looked like a broad puncture from a piece of gravel, it didn't look too bad, and because I could still bend my knees -- carefully -- I figured nothing was broken. I got up and...walked... ha ha... to the bedroom to find some dry clothes, and Ms Ché and I chatted about what had happened as she re-dressed in dry things. Well, you know, it was just one of those things.
She was worried that I shouldn't be walking, but I said I better figure out how lame I was, and see if we could deal with the wounds as best we could. Some Neosporin and bandages should be enough.
So over the next hour or so, we sorted out our various conditions. Ms Ché wasn't injured in the incident, but she's dealing with leg and foot issues of her own thanks to diabetes and an outbreak of psoriasis that makes her have difficulty with her own mobility. The stress of this incident didn't help at all, but she's developed some remarkable strategies to get and keep going no matter what.
I'm not nearly as good at it, but nevertheless, I didn't want to make too much of falling, but I wanted to make the best of it, no matter.
After an hour or so, I was pretty well bandaged up and recovered enough to go out and check the tomatoes. The hail had stopped and it was barely raining.
We only got the plants in the side yard covered. Those on the north side of the house were on their own.
I noted there was a bit of damage here and there, but nothing too serious. It looked like most of the plants would pull through just fine. Whew!
And I could walk. Pain was still pretty bad, but I could walk and get myself up and down steps, so that was good.
By bedtime I was afraid I wouldn't be able to sleep because of the pain. I'd taken a couple of Aleve, though, and the pain was fading. I slept fine. Got up the next morning and was nearly pain free. Wow.
Took it easy yesterday just the same.
But last night when I headed to bed, I felt more pain in my knees, and this morning, I woke up in severe pain -- both knees and ankles. I could barely walk at all. Oh.
I attribute most of it to a developing RA flare. It's been more than two weeks since the Rituxan infusion, and I've had no joint pain or flare. Doctor says, however, I most likely will continue to have flares for at least another month. I took a couple of Aleve which has moderated some of the pain, so I suspect that not all of what I'm feeling is RA related.
We'll see. Today we were planning an expedition to Santa Fe to explore the "Counterculture" exhibit at the history museum. I think we'll have to pass.
So it goes...
UPDATE: By yesterday afternoon, all of the pain was gone, and I could walk without difficulty, though both legs were still stiff and sore from the fall.
I emailed my rheumatologist about it asking whether the absence of pain after what seemed like the start of an RA flare was a sign that the Rituxan was starting to work. It's been a month since the first infusion and she's said that it generally takes six weeks to two months for Rituxan to have measurable effects on RA.
No word back yet.
UPDATE 2:
Got word from my rheumatatologist that it's possible for Rituxan to work within a month though it is rare. The situation as I reported it suggests that in fact the infusions may be working. I need to keep monitoring symptoms and response. And not fall down!
It happened this way: Ms. Ché and I were talking the afternoon away in the house when I thunderstorm came up the way they've been doing almost every afternoon for weeks now. No big deal. Ms Ché got up to let a cat in and casually remarked, "Oh look, it's hailing!."
I said "Oh shit!" and got up. "The tomatoes!" We needed to cover them fast or they could be destroyed. One year, the hail pretty much destroyed everyone's tomatoes in the area. Our friend across the highway had a wonderful crop on the way; the hail not only destroyed her plants, it ruined all but a few of the tomatoes on the plants.
That year our plants were damaged but survived. The crop was minuscule, but at least there were a few.
This year's plants are still very young and quite fragile. They'e Cherokee Purple grown from seed, and we have way more plants than I thought would come through the various disasters of trying to grow tomatoes from seed at this altitude. Close to 100 plants at the moment are in various stages of growth, and some have been transplanted to containers scattered around the place and are growing well.
Hail, though, could mean the end of many of them. So we raced to get as many as we could under cover. As we did, the hail came down stronger and stronger, and as I headed back to the house get more covering, I tripped on a wire -- actually a section of chicken wire laid on the ground to keep the cats from using a patch of lawn as a toilet.
BAM! I fell hard on the gravel -- the rough gravel we use for some pathways -- on my knees, and the pain was amazing. I thought I had broken both knees. Ms Ché saw me down and hollering in pain, while the hail storm intensified. Oh doG, what to do now?
I asked her if she could help me get up, but that didn't work, so I sat there in pain while the hail pelted the both of us and we became soaked to the skin. I couldn't get up on my own, and I was pretty much convinced that at least one knee was shot, if not broken. After sitting there for a while, I asked Ms. Ché to bring over a couple of milk crates that we use to transport things around the place. She did, and with some effort, I was able to hoist my bottom onto the crates, and once there, I was able to slowly and gingerly get myself into an upright position -- with the help of a walker that Ms Ché brought from the studio.
Now what? Could I walk? I didn't know. But I tried one foot in front of the other and sure enough I was able to shuffle through the hail to the back door and make it up the steps and into the house. Whoo-hoo!
The pain in my knees was pretty bad, though, and slowly, I peeled out of my soaked duds. Both legs were pretty banged up from knee to ankle, the left one much more so than the right one. The left knee was quite bloody, and it looked like I'd done more than scrape the skin. I asked Ms Ché if she had any Bactine, and by golly she did. We sprayed it on the wounds.
And I sat for twenty minutes or so in my damp underwear, catching my breath and trying not to get overwrought.
Not a pretty picture.
Ms Ché was soaked, too, of course, but she tried to take it all in stride. I said, "Get into some dry things, I'll be all right." She went off to find something dry to put on while I continued to sit and contemplate my wounds. Apart from the scrapes and what looked like a broad puncture from a piece of gravel, it didn't look too bad, and because I could still bend my knees -- carefully -- I figured nothing was broken. I got up and...walked... ha ha... to the bedroom to find some dry clothes, and Ms Ché and I chatted about what had happened as she re-dressed in dry things. Well, you know, it was just one of those things.
She was worried that I shouldn't be walking, but I said I better figure out how lame I was, and see if we could deal with the wounds as best we could. Some Neosporin and bandages should be enough.
So over the next hour or so, we sorted out our various conditions. Ms Ché wasn't injured in the incident, but she's dealing with leg and foot issues of her own thanks to diabetes and an outbreak of psoriasis that makes her have difficulty with her own mobility. The stress of this incident didn't help at all, but she's developed some remarkable strategies to get and keep going no matter what.
I'm not nearly as good at it, but nevertheless, I didn't want to make too much of falling, but I wanted to make the best of it, no matter.
After an hour or so, I was pretty well bandaged up and recovered enough to go out and check the tomatoes. The hail had stopped and it was barely raining.
We only got the plants in the side yard covered. Those on the north side of the house were on their own.
I noted there was a bit of damage here and there, but nothing too serious. It looked like most of the plants would pull through just fine. Whew!
And I could walk. Pain was still pretty bad, but I could walk and get myself up and down steps, so that was good.
By bedtime I was afraid I wouldn't be able to sleep because of the pain. I'd taken a couple of Aleve, though, and the pain was fading. I slept fine. Got up the next morning and was nearly pain free. Wow.
Took it easy yesterday just the same.
But last night when I headed to bed, I felt more pain in my knees, and this morning, I woke up in severe pain -- both knees and ankles. I could barely walk at all. Oh.
I attribute most of it to a developing RA flare. It's been more than two weeks since the Rituxan infusion, and I've had no joint pain or flare. Doctor says, however, I most likely will continue to have flares for at least another month. I took a couple of Aleve which has moderated some of the pain, so I suspect that not all of what I'm feeling is RA related.
We'll see. Today we were planning an expedition to Santa Fe to explore the "Counterculture" exhibit at the history museum. I think we'll have to pass.
So it goes...
UPDATE: By yesterday afternoon, all of the pain was gone, and I could walk without difficulty, though both legs were still stiff and sore from the fall.
I emailed my rheumatologist about it asking whether the absence of pain after what seemed like the start of an RA flare was a sign that the Rituxan was starting to work. It's been a month since the first infusion and she's said that it generally takes six weeks to two months for Rituxan to have measurable effects on RA.
No word back yet.
UPDATE 2:
Got word from my rheumatatologist that it's possible for Rituxan to work within a month though it is rare. The situation as I reported it suggests that in fact the infusions may be working. I need to keep monitoring symptoms and response. And not fall down!
Sunday, May 14, 2017
An Updated Condition Report -- with Update to the Update
It''s now just short of a week since I had the first of four Rituxan infusions. As I reported, after the infusion I felt pretty darned good. No pain for the first time in weeks, months. Almost complete freedom of movement. A lingering twinge now and then but the feeling of release from pain and restricted movement was magical.
It lasted three days.
Friday, I started noticing moderate joint pains and a dull throbbing pain in my lower back; in addition, there were signs of pain returning to my left hip, along with numbness in my left leg -- sciatica returning.
I took a Flexeril muscle relaxant as a precaution, and the pains seemed to diminish. But Saturday, they returned, focusing in different spots -- the way RA pain does, leading me to believe that I was having or trying to have another RA flare (for many weeks, weekend flares were routine). But then, almost magically, the pain of a flare seemed to disappear, and by late Saturday morning, I felt well enough to start mowing some of the out of control herbage out back.
Mistake. The pain came on again. I didn't take another Flexeril, but I did have to rest. I stayed up quite late Saturday night, monitoring my condition. When it seemed like the pain was not going to worsen, I went to bed.
When I got up Sunday morning, pains in my hips and shoulders were noticeable. Wrists and finger joints were painful as well. It was flare all right.
Later in the day, however, the pains diminished until they were almost gone. That never happened with previous flares. My neighbor Wes came over to help with the mowing, and though I didn't do much, I was able to take care of picking up some of the branches downed by the wind. No noticeable pain. Later in the day, however, when Ms Ché and I went for a supply run, I started experiencing sharp pain in my left shoulder, somewhat less pain in my right shoulder and wrist. Both knees were periodically painful as well.
So the flare isn't over. It's modified. Is that due to the Rituxan? I don't know. I'm supposed to talk to one of the nurses at the Rheumatology department tomorrow about what's been happening. On Thursday I sent an email to my rheumatologist describing my trip to the ER and what seemed to be miraculously pain free days since the Rituxan infusion.
Twice, nurses from rheumatology called me Friday to find out if I was OK. I said yes, but the flare really got going on Saturday.
So, we'll see where this latest episode goes. Right now, I'm feeling pain in my left shoulder, twinges elsewhere. But it's not nearly as bad as previous flares.
We'll see...
UPDATE: (Monday May 15, 2017) Word came from my rheumatologist that my "good feeling" last week was not likely due to the Rituxan -- effects don't generally kick in for several months -- but was from the high dose of steroids included in the infusion.
I reported my current symptoms -- various joint pains -- and was told that's to be expected. For the time being anyway...
Sigh.
It lasted three days.
Friday, I started noticing moderate joint pains and a dull throbbing pain in my lower back; in addition, there were signs of pain returning to my left hip, along with numbness in my left leg -- sciatica returning.
I took a Flexeril muscle relaxant as a precaution, and the pains seemed to diminish. But Saturday, they returned, focusing in different spots -- the way RA pain does, leading me to believe that I was having or trying to have another RA flare (for many weeks, weekend flares were routine). But then, almost magically, the pain of a flare seemed to disappear, and by late Saturday morning, I felt well enough to start mowing some of the out of control herbage out back.
Mistake. The pain came on again. I didn't take another Flexeril, but I did have to rest. I stayed up quite late Saturday night, monitoring my condition. When it seemed like the pain was not going to worsen, I went to bed.
When I got up Sunday morning, pains in my hips and shoulders were noticeable. Wrists and finger joints were painful as well. It was flare all right.
Later in the day, however, the pains diminished until they were almost gone. That never happened with previous flares. My neighbor Wes came over to help with the mowing, and though I didn't do much, I was able to take care of picking up some of the branches downed by the wind. No noticeable pain. Later in the day, however, when Ms Ché and I went for a supply run, I started experiencing sharp pain in my left shoulder, somewhat less pain in my right shoulder and wrist. Both knees were periodically painful as well.
So the flare isn't over. It's modified. Is that due to the Rituxan? I don't know. I'm supposed to talk to one of the nurses at the Rheumatology department tomorrow about what's been happening. On Thursday I sent an email to my rheumatologist describing my trip to the ER and what seemed to be miraculously pain free days since the Rituxan infusion.
Twice, nurses from rheumatology called me Friday to find out if I was OK. I said yes, but the flare really got going on Saturday.
So, we'll see where this latest episode goes. Right now, I'm feeling pain in my left shoulder, twinges elsewhere. But it's not nearly as bad as previous flares.
We'll see...
UPDATE: (Monday May 15, 2017) Word came from my rheumatologist that my "good feeling" last week was not likely due to the Rituxan -- effects don't generally kick in for several months -- but was from the high dose of steroids included in the infusion.
I reported my current symptoms -- various joint pains -- and was told that's to be expected. For the time being anyway...
Sigh.
Saturday, March 4, 2017
Note on What Condition My Condition Is In
Well, I don't rightly know. Still trying to find out. At least there's no sign of multiple myeloma which is what I was at the doctor for the other day. It's being monitored because of a blood abnormality due to rheumatoid arthritis and the medications I'm taking for it. But there is no sign that either one is leading to the development of multiple myeloma, so that's good.
My rheumatologist has been trying to get me in to see a pulmonary specialist at UNM to see if there is something that can be done about my pulmonary issues -- which seem to be worsening. This is the real danger of rheumatoid arthritis if it affects the lungs as in my case. Untreated, it causes interstitial lung disease, pulmonary fibrosis, which eventually but inevitably makes it impossible to breath and you die.
I am being treated, but I'm not sure the treatment is all that effective any more, and the doctor is concerned enough to want me to see someone who is specially trained to deal with what she says is a rare enough pulmonary condition that she has no expertise in treating it.
Well, that gets us into the medical insurance bureaucracy big time. I have HMO Medicare Advantage coverage, and I'm finding out just how limited it is. I cannot have treatment outside The Network without advance approval from On High. Getting that has literally taken months of back and forth between my doctor and On High. It's almost unbelieveable what has been going on. I got approval -- however.
When I tried to get an appointment at UNM, the first available they had was in June, which my rheumatologist says is too long a wait, and I would agree as I feel worse and worse practically every day.
So she's trying to get it moved up. But who knows?
Part of the issue has been the HMO pulmonologist -- who I've seen and who has been essentially useless. He says treat the RA and the pulmonary problems will be mitigated. The rheumatologist says, no, there are specific immunosuppressant treatments for interstitial lung disease caused by RA that are not generally used to treat RA itself, and she needs a competent pulmonologist to guide those treatments.
So.
We'll see.
My rheumatologist has been trying to get me in to see a pulmonary specialist at UNM to see if there is something that can be done about my pulmonary issues -- which seem to be worsening. This is the real danger of rheumatoid arthritis if it affects the lungs as in my case. Untreated, it causes interstitial lung disease, pulmonary fibrosis, which eventually but inevitably makes it impossible to breath and you die.
I am being treated, but I'm not sure the treatment is all that effective any more, and the doctor is concerned enough to want me to see someone who is specially trained to deal with what she says is a rare enough pulmonary condition that she has no expertise in treating it.
Well, that gets us into the medical insurance bureaucracy big time. I have HMO Medicare Advantage coverage, and I'm finding out just how limited it is. I cannot have treatment outside The Network without advance approval from On High. Getting that has literally taken months of back and forth between my doctor and On High. It's almost unbelieveable what has been going on. I got approval -- however.
When I tried to get an appointment at UNM, the first available they had was in June, which my rheumatologist says is too long a wait, and I would agree as I feel worse and worse practically every day.
So she's trying to get it moved up. But who knows?
Part of the issue has been the HMO pulmonologist -- who I've seen and who has been essentially useless. He says treat the RA and the pulmonary problems will be mitigated. The rheumatologist says, no, there are specific immunosuppressant treatments for interstitial lung disease caused by RA that are not generally used to treat RA itself, and she needs a competent pulmonologist to guide those treatments.
So.
We'll see.
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