Recovery

 I completed a 12 week course of antibiotic treatment for osteomyelitis in early December and thought that with enough physical therapy, I'd be more or less OK, at least well enough to get around and do most of my tasks,

Well, it hasn't worked out that way. Not quite. I've had some serious problems with pain. I cannot get around very well, both because of pain and a surprising amount of numbness in my left leg and foot. I limp. I drag my left foot when I walk, and I often have little idea where it is in space. I'm very unsteady on my feet and have nearly fallen many times. I have actually fallen twice since returning home from the hospital, both times acquiring some interesting bruises and fierce pains in one or both knees. 

Yesterday I got a call to set up an assessment appointment with a neurosurgeon. I am pretty well convinced that the problems I continue to have are due to nerve damage from the infection but I don't know whether there is any reasonable solution. We'll see.

And then there are dental issues. But that's for another time and place.

"What a drag it is getting older..."

Health-X Update

The roller coaster continues, but it's on the slower part of the ride right now. Good.

It's been just about two months since my second Rituxan infusion, and so far, so good. I still get joint pains regularly, almost clockwork for early morning pains (3:00am, sometimes 4:00) but they're not as frequent as they were, and they are never as painful as they were. I call it a "3" instead of a "10" or higher. The pains last a few minutes to an hour and then they're gone. I spend most of every day almost pain free. Last time I saw my rheumatologist, I told the nurse my pain level was "0" -- almost unheard of in that office.

So, this is all very positive.

Of course the cost for the Rituxan treatment was/is breathtaking, incomprehensible. $42,000 for two 50mg infusions? (According to the prior authorization, however, I'm supposed to get 2000mg over the six months of treatment. Not sure what the deal is with that...)

When I finally got a more or less comprehensible bill, I found I was charged 10% of the approved cost of the Rituxan for each infusion, ($9,492 x 10%= $949 x 2= $1,898.) I wasn't charged for anything else connected with the treatments.

I made something of a stink because this wasn't anything like what I was told the charges would be. Because I wasn't given accurate information, I wasn't able to prepare.

I applied for financial assistance through the hospital, and after some back and forth over income documentation, it was granted: 50% reduction in all my costs associated with the hospital and my providers for the 240 days prior to my application.

Ergo, $949 for the two treatments. Somewhat more than I was prepared for, but not outrageous. I guess. Well, how can one know? Still trying to understand what I actually owe, as the charges for the Rituxan treatment have been reduced by some of the out of pocket charges I've paid for doctor visits and tests.

I am told that I will need another two infusions in October  or November, and I will have to reapply for financial assistance at that time, but it will most likely be granted. So my ultimate cost for the four infusions of Rituxan should be $1,898. More than I was anticipating, but still within a manageable amount. Much more than that, though...

Which brings me to medication costs. I've been in the notorious Part D "donut hole" since last month, My prescription for mycophenolate alone is now costing $450 a month out of pocket. Add in Spiriva, Albuterol, Plaquinil, and miscellaneous other meds, and we're  looking at about $1,000 a month out of pocket for the next four-five months. OK. How do we pay for that?

I checked online, and discovered a source for mycophenolate at $106 a month, such a deal. I don't use Spiriva or Albutertol unless I need them, and I rarely need them. Hardly ever. So I still have them from months ago. The other meds I take are relatively inexpensive, so if I can get the cost of mycophenolate down and can continue not using Spiriva or Albuterol, drug costs will be more or less manageable as well.

I'm supposed to see a pulmonologist at UNM today for an assessment of my lung condition which was becoming quite severe. Recent CT scan indicates that the condition has stabilized and has not progressed beyond the damage noted almost a year ago when I started taking mycophenolate. I still have some breathing difficulty but I don't use oxygen or inhalers any more.

And I'm able to get around and do things with far less difficulty than before.

It's the New Normal. Slower, more deliberate and careful, as if Old Age were settling in.

Ms. Ché is facing a whole raft of issues of her own, most of them consequences of diabetes and most of them more or less under control. I urge her to slow down. She won't, but still I urge her. She'll be going back to IAIA full time next month, three more semesters she says before she gets her degree in Creative Writing. Getting through it is somewhat more of a challenge than she was anticipating, but she's as determined as ever, come what may. And she has a lot of support. From the administration, from the faculty, and from fellow students. She may be an "old broad" as she calls herself, but she feels perfectly at home among the young pups. Sadly, we don't have the money to buy more of their art.

I know so many people are in much worse shape than we are, and I'm grateful for what we have and what we are able to share. Some of what's been going on, particularly since Ms Ché's wreck in January, has been a shock no doubt. But we carry on.

Rituxan In the Morning

Yesterday was another infusion day, so I spent the morning hooked up to an IV drip in a comfy bed at the Infusion Center reading "Cannery Row" by John Steinbeck which I had not done before despite my enthusiasm for Steinbeck and his dyspeptic vision of California's Central Coast and its society.

In that regard, I should mention that my (new found) cousin sent me a journal kept by her mother and our aunts that has an extended section  telling tales about their cross country rail expedition from Washington DC (where they were working at the WPA headquarters) to The Coast, where they did and saw everything. They saw all the sights from the Redwoods to San Francisco's Golden Gate and International Exposition at Treasure Island to Hollywood and Beverly Hills where they hob-nobbed with the movie stars and studio honchos. They went out to the beach and sunburned lobster red, they even went to Mexico, briefly, and saw a disgusting bull fight.

This was 1939. They passed through the Salinas Valley on their way to Los Angeles, but I can't imagine they noticed much. Certainly not the wretchedness and waves of travelers up from Mexico and still crossing the country from Oklahoma. What they reported and what they saw was the idealized tourist vision of California. There was always some truth to it, but it never told the whole story. Not by a long shot.

Steinbeck fills in some of the blanks, but he was hated for it in and around Salinas. His stories of his home place and the people there were stories you weren't supposed to tell. I grew up in other parts of California being socialized to that same notion. There are simply things you do not mention. If you're smart, you won't even look into them.

For example, I spent years studying the Gold Rush and the people who made their way to California between 1849 and about 1855. I reviewed all kinds of original documents kept at the California State Library and other places, and scoured the Gold Country for remaining clues to what was going on in those days.

The picture that emerged was nothing like the glorified and romantic image of the Gold Rush we were taught in school -- and I guess is still widely believed. For many who made the trek, it was horrible. Many died along the way or shortly after arrival. It cost a fortune to make the trip, and the chance of finding gold or even surviving more than a few months was slim to none.

And yet they kept coming. By the hundred thousands and ultimately by the millions they kept coming. My mother and her mother and stepfather among them. Most of my father's siblings -- but not himself -- came and settled in California, too.

Ms Ché and I left, though. She was born in California, and I lived there almost all my life, and the two of us could hardly wait to move to New Mexico.

Where I think we've never been happier -- health issues for both of us aside.

And so it goes.

Yes, there are plenty of challenges in front of us, and many memories left behind (along with a storage unit full of... stuff, including some of those memories...)

Perseverance, yes. But ultimately relaxation and freedom, too.

More to come.

OT: Sicky?

Well, I don't know. I am being scheduled for a whole raft of tests in the upcoming weeks and months, because my rheumatologist and pulmonologist disagree on what's wrong and how to treat whatever it is.

There is no doubt I have rheumatoid arthritis; joint pain and swelling are being treated with a combination of drugs: leflunomide, plaquinil, and prednisone. So far, the combination has worked well on my joints, so I have few complaints about that treatment. (It is expensive, but I'll get to the cost issue later or perhaps another time.)

The problem that isn't being treated directly is pulmonary. Ie: I have severely reduced lung capacity, and that leads to all sorts of other problems including chronic fatigue -- which is getting worse -- chest pain, tingling and numbness in my extremities, and so on.

According to the pulmonolgist, this is due to pulmonary fibrosis caused by RA. He says "treat it aggressively with steroids." My rheumatologist is dubious and says that from her perspective, she's not convinced that RA is the cause of my lung issues; she thinks it may be emphysema instead, as her read of the CT scan I had six months ago is that I have severe emphysema whereas the pulmonolgist says it's mild (which was the diagnosis when I had a CT scan five or six years ago as well.)

The rheumatologist also said that if it is RA-caused pulmonary fibrosis, she would treat it very differently than she treats my joint pain, and she doesn't want to start a course of treatment for fibrosis if that's not what I have. So she wants me to go to Denver for advanced tests at National Jewish Health, the leading respiratory hospital in the country. Let them determine what's really wrong, right?

As for steroid use, I've received so many warnings of dire side effects, I hesitate to add more to my current low-dose prednisone treatment (7.5mg per day) for joint pain. But the pulmonologist says that "aggressive treatment with steroids" is what I need for diminished lung capacity.

OK, what to do?

Meanwhile, the CT scan I had six months ago showed a mass in my lower right lung. This was thought by my primary care physician to be a consequence of pneumonia I was then recovering from, but the radiologist thought it might be a fibrous mass due to RA. He couldn't determine from the scan which it was, but he said it was  dubious about a pneumonia diagnosis from the scan. In the meantime, I have actually felt the mass recently, whatever it is, growing and pressing on my chest wall, causing discomfort and occasional pain. In passing, there has been some doubt I had pneumonia due to ambiguous symptoms and failure to respond to mild antibiotic treatment early on.

My rheumatologist says it could be cancer. Oh, thanks! I doubt that, but still. When physicians disagree, and suspect the worst, it's better to find out. I guess.

So, another CT scan is scheduled next week and tests in Denver are pending.

I'm frustrated to say the least. But this is how these things go.

FTR, I stopped smoking almost 20 years ago. If emphysema has worsened, it's not due to continuing use of tobacco. Since all these symptoms have multiplied, I suspect it may have something to do with altitude, as I moved from sea level in Sacramento to 6,300 ft in New Mexico's East Mountains in 2012. It may have to do with that and breathing dust, and perhaps other environmental triggers. I don't know. Of course, Old Age enters into it, too.

The saga continues.

[Ms Ché and I went to Santa Fe last night to see Jonathan Richman at Meow Wolf (George RR Martin's artist venture in a repurposed bowling alley we almost couldn't find). We saw him (aka JoJo) several times in St. Louis and California decades ago when he was still a pup. He's grizzled and old now -- like the rest of us -- but he still makes the kind of music he always has, and the crowd (which was mostly 20s and 30s age, plus their children, not geezers like us) ate it up. Yay! However, myself, I had problems standing through the whole concert (no seats for the wicked), and I was worried I wouldn't be able to walk afterwards. Luckily, I found a post to lean against and was able to jigger my leg enough to keep the circulation going, and ultimately made my way back to the car under my own power. Yay, again! I said to Ms. Ché that it was "quite a pick-me-up." She eagerly agreed. Fun.]

Random Notes

I've been on a surprisingly long hiatus -- partly due to health issues, partly because of the surrealness of the passing scene. Sometimes I wonder if we have all tumbled down a rabbit hole from which there is no turning back.

Health: My condition (rheumatoid arthritis) is stable, I guess. But word came yesterday that the rheumatologist suspects I have another complicating condition that needs treatment as well -- but she won't say what she suspects, just wants me to see another specialist. Sigh. What I can say is that there have been periods recently when I've felt... strange. Almost out of body. I attribute it to medication, but I'm not sure. At any rate, just remembering to take all the medications I've been prescribed is something of a challenge. They seem to work well enough, but there are so many, it's sometimes more than I can manage to remember them all and remember to take them in the right sequence.

Costs are starting to climb as well. So far, the cost is not crippling, but it's surprising just how much of my treatment and prescriptions are not covered by the Medicare Advantage plan I signed up to or are covered at such a low percentage of cost that I pay almost full price.

Brexit: Jeebus. What a clusterfuck. Watching the utter meltdown of Our Betters following the vote was/is entertaining, I suppose, but there is something curious about all the sturm und drang and garment rending that strikes me as completely phony. Things are not what they seem. There is a strong element of Show Business, in other words, that leads me to believe that in the end, Britain will not leave the EU, and the voters will learn that their vote really doesn't matter. These things are not to be decided by plebiscite. Very little is to be decided by the Rabble in the end.

Anyone who's watched what's happened to Greece, among other places, should have learned that by now. The People are to have as little say in matters of state and importance as is possible. Going forward, they should not expect to have any say, or if they have one, they should expect their decision to be ignored -- if it contradicts the decisions of Their Betters.

We'll see, but I'm not convinced -- at all -- that The People will have their way in Britain any more than they have had their way most anywhere else lately.

Clinton v Sanders v Trump: OK. It's always more important for neoliberal Democrats to attack and if possible destroy their left flank. The Left is considered an existential threat to the neolibcon program and must be crushed. Consequently much more energy is devoted to suppression of the so-called Sanders "Political Revolution" than has gone into "fighting" Republicans.

More and more it appears that Trump will not be the Republican nominee, assuming the Republicans want a contest for the White House (not entirely clear). The Rs seem to be happy enough with Clinton, almost as if they would have nominated her if Sanders had become the Democratic nominee.

The important thing for both Clinton and Trump is to keep the Sanders Wing from any kind of power no matter what else happens. The spectacle is typical but largely uninteresting.

That's just me, though...

Houses: On a completely different note, while pondering the world my parents grew up in -- so different from our own -- I've thought a bit about the houses where they lived. Those houses, I think, had a shaping influence on them, just as the houses I grew up in have shaped who I am.

My father was born in Iowa in 1901, the second son of a prominent Irish-American attorney and his German-American wife. The family lived in a series of Victorian houses on one street, actually one block of one street. These houses were not that big, they certainly weren't fancy, and even the biggest of them and the fanciest was relatively modest compared to the mansions of the town's wealthy just a couple of blocks away.

As the family grew, their houses got bigger. There were eventually eleven children, nine of whom lived to adulthood. They did not have electricity, however, until about 1913. They had servants -- a cook/nanny/housekeeper and a man to take care of the yard and drive the car. Ultimately, my father inherited one of his father's houses on that block and he lived there the rest of his life.

It was an old and very small house, though it was two stories. I remember it well, even from a very early age. The earliest memories I have of it are of the smell of the coal furnace in the basement and the rough feel of the wool rugs against my skin. There was nothing fancy about this house. Parts of it dated back to the 1840s or 50s, very rough and simple. Additions were made in the 1870s and 1890s, and my father remodeled some of it in the 1940s and 50s. But even though it grew, the rooms were small, some of them were actually tiny. The house still stands. It's been remodeled and expanded again, but I imagine it's still small and plain.

My mother was born in Indiana  in 1911 and lived the first five years of her life with her mother, grandmother and aunts in a house that no longer stands. It was replaced in about 1915 with a fire station. The family moved next door into a house that still stands, a simple Victorian place that is deceptively large. In 1917, however, my mother, her mother, and her step father moved to California where lived in a pretty typical California bungalow that still stands, though it has been heavily remodeled over the years. The bungalow was something like this. In fact, I think it was a lot like that. I think that house had a strong influence on my mother when she was growing up.

In Sacramento, we lived in a neighborhood that was filled with Arts and Crafts bungalows, and I became familiar with some of them. What struck me about so many of them is that they were dark, dark as caves, and nothing at all would brighten them up. I think it was because they were so dark that owners painted the woodwork white. Arts and Crafts aficionados, of course, are passionate about stripping the paint from bungalow woodwork, and then they wind up with a dark house once again. But I guess they like it.

Bungalows were considered progressive compared to their Victorian predecessors. It's a rather strict style, floorplans tend to be standardized, and for the most part, bungalows are compact. There are exceptions (like the Gamble House in Pasadena) but the house my mother grew up in was small, tight, dark (I'm assuming) and she probably felt confined.

How that influenced who she became is a topic for another post...

DNA Results, COPD, RA, and Other Things, Oh My

Well, one of Ms Ché's cousins and her husband are coming to visit from Nevada tomorrow, and we're preparing to show them the sights. Some of them, anyway. They've been all around the world, but have never been to New Mexico, and they want a fix of "vibrant art." This is the place, right?

It's gonna be a whirlwind, as it's only two-three days, and we're planning adventures to Taos to see the Mabel Dodge Luhan house and take in the exhibit on her at the Harwood, then to the Fechin house where the Taos Art Museum is located, then out to the Pueblo. Next day, Santa Fe. The Art Museum, the Museum of Contemporary Native Art, the Georgia O'Keefe Museum, the Museum of Indian Arts and Culture, several galleries (we couldn't possibly do more than a few of them) and then out to eat at Harry's Roadhouse (a must-stop-in for all out of town visitors though if it is as crowded as it can get, we'll happily go out to La Plancha in El Dorado.)

Then finally the next day, if we can swing it, out to our place, and the Route 66 tour into Albuquerque and possibly beyond. We live near what I believe is the longest stretch of the Old Route 66 still in use -- at least it's the longest stretch of it in New Mexico -- and while it isn't particularly touristy, it's actually a nice drive, and  when the weather is good, the Mother Road is always a treat.

I'm wondering how much of this I can actually do, however. One of the problems associated with RA -- rheumatoid arthritis -- is fatigue. Fatigue is also a factor in recovery from pneumonia. I've tried to do some work outdoors, catching up a little bit on spring-time chores I wasn't able to do before, and I've found I become fatigued in only a few minutes. Twenty minutes is about the longest I can go at a stretch. Each of these days of adventure next week are going to be long... We'll see how much of it I can do...

Ms. Ché and I did the Ancestry.com DNA test. Until fairly recently, it was considered a borderline fraud, in part because DNA tests are not yet able to state with certainty the specific ancestry of testees. The results obtained give general possibilities at best. Because Ancestry really didn't clarify how non-specific the results were, they got a lot of complaints from people who did the test and got results that appeared to have nothing at all to do with their actual (documented) ancestry.

I got my results back. We're still waiting for Ms Ché's.

Mine were interesting, and I think they are fairly accurate, though they require interpretation to understand.

The surprise was that I show no German ancestry, nor do my cousins who have also taken the test.

It's taken me a while to fathom that because my paternal (their maternal) grandmother's parents emigrated from (what would become) Germany in the 1850s. There's no doubt about it. We know where they came from, we have documentary evidence, yadda yadda, but there is no German ancestry identifiable in our DNA. How can that be?

Well. Could be they weren't ethnic Germans. That's the easiest explanation. It's one that fits some of the stories I've heard that suggest they were descendants of Jewish conversos. Of course, wouldn't you know, my DNA shows no "European Jewish" ancestry, either.

It does show what I take to be an overabundance of British ancestry (67%). That's much higher than I figure it should be because I only inherited British ancestry from my mother (who was essentially of British ancestry all the way down, though her people had come to America starting soon after the Mayflower -- and there are hints that she had at least one ancestor on the Mayflower itself.)

My father, on the other hand, was half Irish and half German. Well, that's what he thought. So I should be a quarter Irish, a quarter German, and half British.

The test showed my DNA was 25% Irish, no German, 67% British, 7% Eastern European, and less than one percent each Scandinavian and Iberian.

Oh. What happened to the German?

It turns out Ancestry DNA doesn't even have a German category. The closest thing it has is "Central European," and if you dig around enough in their articles about the test, they state that the test cannot distinguish between British, German, and Scandinavian ancestry with any certainty. A test report may come back, as mine did, with an overabundance of British DNA, but no Central European ancestry. The "missing German" ancestry may well be folded in with the extra-British DNA. In fact, that's probably where it is.

My cousins, on the other hand, show an excess of Scandinavian ancestry in their DNA, and once again, that may be where the "missing German" is.

The 7% Eastern European ancestry indicated in my DNA is likely from my German great grandparents, and it may be a hint of their Jewish ancestry, but I don't know. As there are no specifically Jewish markers, I'll have to let that rumor rest for a while. There are records in Germany, so maybe one day I'll probe them more deeply and find out, but for now I'll let that ride.

The tiny bit of Scandinavian ancestry indicated in my DNA is probably from my Irish-German father. His Irish ancestors claimed to be "Irish" -- ie: Celts -- but that's likely a crock, as practically everyone in Ireland has some Scandinavian ancestry from the Viking and Norman invasions. Particularly so for red-heads like me whose red-head is a variation on blond, as opposed to the red-heads who may be Celt whose red-headedness is a variation on black hair.

The tiny bit of "Iberian" -- which could be Spanish, Portuguese, French or Italian -- ancestry I attribute to my mother's father. His last name (Olive) is possibly French, possibly Scottish. Could be both given the way the French and the Scots were intertwined at one time (ie: during the reign of Mary, Queen of Scots and before).

My mother's father's mother was from Colonial New England stock -- going back as far as I could trace in America and then in England as far back as I wanted to go. My mother's father's father's line stubbed out in Virginia with my mother's father's grandfather who was born c. 1798. That's all I could find out. There was no record before that.

My suspicion is that the original Olive immigrants came from Scotland or Northern Ireland at about that time, settled in Western Virginia, then moved to Kentucky, then, finally to Indiana as the Indians were expelled and the West opened to settlement.

My mother's mother's people were British from the dawn of time.

I had thought my mother was at least partially Irish -- she seemed to think so herself, but she didn't really know, because she didn't know much of anything about her biological father. Then years ago, I saw a film version of D. H. Lawrence's "Sons and Lovers," and I was stunned that one of the very British characters was the spitting image of my mother, both visually and more importantly behaviorally. Wait I thought, was my mother actually British?

Indeed, that's what I found -- at least on her mother's side as well as on her father's mother's side, and probably significantly on her father's father's side too.

Huh. Who'd a thunk? What still intrigues me is that I recognized my mother's character in a movie of a novel by British author D. H. Lawrence, based in part on his own experience and family. Well, how about that?

Oh yes, COPD. Part of the treatment I'm undergoing is for COPD, which I never really thought I had, but apparently I do, thanks to repeated bouts of pneumonia and scarring from emphysema which is a result of smoking. I stopped smoking twenty years ago, and I thought I was doing pretty good at healing my lungs from the Devil Tobacco, but apparently several things have conspired to set me back. One of them is rheumatoid arthritis. Turns out that lung inflammation (like joint inflammation) is a consequence of RA, and lung inflammation can and does make RA patients susceptible to pneumonia.

Ay!

My doctor told me that the prednisone I take for RA symptoms is an immunosuppressant which may be exacerbating my tendency to get pneumonia, but others say that prednisone actually suppresses the inflammation which makes it less likely that I will get pneumonia. So. Who knows?

We'll see what the rheumatologist has to say about that...

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UPDATE: Ms Ché just got her DNA results back, and it is astonishing, practically a book in the making. No time to go into details, but the upshot is that her DNA spans the globe. Literally,