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.

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!

Two Weeks

Well.

It's been two weeks since my second infusion of Rituxan, and who'd a thunk? No pain. Well, almost no pain. Occasional twinges, yes. Momentary annoyances. Difficult mornings getting going. But nothing like the situation just a few weeks ago when I dreaded weekends because I would almost certainly start a flare on Friday which wouldn't fade away until the following Wednesday.

I would be lucky to have one or two "good days" a week. Yikes.

But now? I'm far from a cure -- in fact, they say there isn't one-- but it is possible I could go into remission (with medication), and if I do, I'll probably need infusions every six months for some time to come. But for now, I'm grateful to be almost completely pain free, even if it's only temporary.

During all this RA business -- been going on for two years now (longer when I think back to early symptoms) -- I've had no pain relief medication (except what I had on hand from previous sciatica episodes).

I thought it was odd that no matter how much pain I was in my doctors never prescribed pain medication of any kind. At one point, early on, I was self medicating with Aleve which initially provided some relief, then it didn't. I increased the dosage again and again, until I was up to 1600mg a day or maybe more, and still very little or no relief. Doctor said, "Whoa! Stop! That's too much!"

Well, what will you give me for pain relief? Eh?

The answer was steroids. Prednisone (which I tolerate pretty well; some people don't).  High doses tapering off to low doses. A maintenance dose until other medications kick in.

No specific pain medications at all.

The other medications might work for a time -- a few weeks or months -- but then not. I went through a half dozen or more meds trying this and that (I didn't keep track) to see what worked. Nothing did for long.

At one point, three-four months ago, I had tapered the prednisone to 7.5mg a day, the lowest dose I'd taken for over a year. That's when things started going haywire, and I was facing weekly flares. Doctor said increase prednisone dosage: I took up to 40mg a day with only partial effectiveness. This went on for months. The only relief offered was higher doses of prednisone, and when I pointed out even that wasn't working, it dawned on my rheumatologist that something else was called for at least as a bridge until the Rituxan could work.

And so, for the first time in years, I was prescribed an opioid (Tylenol 3) -- which I haven't had to take due to the apparent effectiveness of the second Rituxan infusion. If I do have a flare, however, and the Tylenol 3 doesn't work, doctor is prepared to prescribe (drum roll) Oxycontin.

She also prescribed a stronger version of prednisone in case of otherwise uncontrolled flares.

So far, however, I haven't had to take either one.

Whoo.

I know there is currently a hysteria over opioid addiction among lower class whites, largely due -- they say -- to overprescription of pain relievers among the Lower Orders. So there are any number of restrictions on doctor prescriptions, and I had to jump through all kinds of hoops to get what I got.

And I haven't taken it. I haven't even opened the package.

If the Rituxan works, I won't, either.

I will keep it on hand, however, just in case.

You know what? Chronic pain is a terrible and debilitating thing. I've experienced my share, and I know others who have had it much worse than me. Doctors face a serious problem in prescribing for pain relief -- except, apparently, in certain ruralish white enclaves where anything goes -- because of the opioid hysterics.

I assume that's why nothing was provided to me specifically for pain relief for years.

Of course, if you're among the High and the Mighty, there are no problems at all in getting what you need to control your pain -- or anything else.

None at all.

So...

We'll see how this goes.

So far, so good.

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.

Rituxan

I was infused yesterday with Rituxan, an anti-cancer drug that's used in difficult cases of rheumatoid arthritis.

It went well enough I guess, despite all the warnings I was given both before and during the treatment. The worry is that patients will have  "a reaction" -- sounds like an allergic reaction, much as I had to the CT contrast dye the first time I had a CT scan decades ago. I felt the dye coursing through my blood stream and had an inside out feeling of itching, swelling, breathing and other difficulties. I passed out and stopped breathing. I don't know how close I got to the final elbow, but I remember waking up as CPR was beginning and a Benadryl injection was ordered. I was wheeled back to my hospital room where the nurse said I was lucky. They'd lost a patient the week before because they didn't get to him in time. Yes, well...

One patient in the infusion center did have a reaction, and there was no nurse available immediately, so things got a little scary for a time. The patient was in fact stabilized shortly though and did seem to recover fairly quickly. They increase the dosage of  Rituxan very slowly so that if you have a reaction, it will be easier to counteract.

The only thing I felt the whole time was a slight drowsiness and light-hadedness that seemed very similar to the way I feel whenever I take Benadryl for allergies (which is rarely anymore.)

The only thing is, the process takes several hours, in my case, from 9am till 2:30pm. You aren't completely a prisoner to your bed, but you feel like it sometimes. I had a book with me, "The History of American Archeology" -- rather a dreadful tome from the 1970s -- that kept me occupied. More or less.

I have to do it again in two weeks, and then twice again in six months, and then -- the hope is -- not again afterwards. The idea is that the RA will go into remission. I'm for that.

UPDATE: I feel much better today than I have in weeks, maybe months. It may just be coincidence, but it may be due to the Rituxan as well, If it is due to the Rituxan, yay.

Here We Go Again...

I woke up this morning (Saturday) earlier than I thought I should, and I could feel the pain coming on. Again. It's Saturday, so it must be the start of a flare. It's been that way for more than a month.

I'm not happy about it. I've decided to keep more of a record about it here than I otherwise would, simply because things seem to be going haywire, and I've never been good at record-keeping of personal events. I can narrate them after the fact, but while this or that is taking place, I usually don't have a great deal to say about it.

But RA has put me in a state of wonderment and bewilderment. "What is going on?" I keep asking the gods and goddesses. A smirk perhaps plays on their lips and that is about all I can find out from them. They know. They're not telling.

For a year or more I didn't have flares. What would happen is that from time to time, pain would affect one or more joints -- not general joint pain -- I would tell the doctor and she would change my medication and the pain would abate for a varying length of time (generally months) before the sequence would repeat. So I've had several different medication routines, all of which have controlled the pain of RA more or less well -- until now.

I take my usual medication -- with the addition of pain pills that I've had on hand for years -- and it doesn't necessarily control the pain at all. Maybe it will, maybe it won't. You never know.

The doctor wants me on rituxan, a cancer drug that is used for RA when other biologics fail. That's the case with me, apparently. The doctor has gone through the standard list -- with the exception of methotrexate which she has been unwilling to prescribe 1) because of nasty side effects, 2) because of RA induced interstitial lung disease which she says the methotrexate makes worse.

Given that situation, she feels she has no choice at this point but to put me on IV treatment that could -- she says -- cause the RA to go into remission. Well, that would be nice.

But.

There's some kind of hangup with the insurance (again.) Doctor recommended rituxan IV infusion a month ago when the current sequence of flares started. Exactly how to arrange that was left up to a nurse who is adept at maneuvering through the twists and turns of the insurance bureaucracy (prior authorization was required, for example, and getting that could take some doing.) Anyway, she thought she had it all arranged, and I was to get in touch with the financial aid person at the infusion center to see what the costs would be (it's very expensive at rack rates, though insurance apparently pays for all but a couple of hundred dollars. How much insurance pays depends on coverage limits and household income. Apparently.)

I got in touch, "touching base" as they say, and then I heard nothing. Stephanie, the nurse, said there was a hangup and I would have to see the doctor again for an evaluation before prior authorization would be granted, and she made me an appointment a couple of  weeks hence.

In the meantime, I received a letter of authorization in the mail the week of my appointment. Got the letter on Monday, the appointment was on Thursday. After the evaluation -- yes, I need treatment because of recurring flares that are at best partially controlled by current medications, at worst are not controlled at all -- Stephanie called the person over at the infusion center, and a very interesting discussion ensued.

Stephanie told her that I had just finished the office visit with my doctor and that I had received an authorization letter a few days previously. What were we to do now?

I shouldn't have received authorization, said the infusion center person (Katrina), as she had personally withdrawn authorization. The letter I received was therefore not valid.

She had withdrawn authorization because she said I needed to be evaluated by a doctor (my own rheumatologist would do) before treatment could be authorized. The earlier recommendation was not sufficient. Needed specific indications that infusion treatment was necessary -- such as the failure of previous rounds of biologics.

OK. So that was done. Now what?

Once Katrina had a chance to review the new evaluation, authorization could go forward, and -- as far as I could make out -- the infusion center would contact me for an appointment. Shouldn't take long.

Or so Katrina seemed to say. You never really know what they're saying when they're talking insurance bureaucracy. It took months and months to get authorization for out of network treatment in Denver (which I likely will not go to) and almost as long to get authorization for out of network treatment in Albuquerque at UNM, and then another several months wait for an appointment (this is for lung disease treatment). So.

Well, a week goes by. I report to the doctor that I am continuing to have flares and the pain is sometimes debilitating when no medication seems to work. She wanted to know what was happening with the infusion center.  I told her I didn't know as no one had contacted me. She said she wanted me treated ASAP and had her nurse (not Stephanie) call to find out what was going on.

She was told that the infusion center would contact me "shortly" to make an appointment.

Well, that was Thursday.

No contact yet. Of course I learned long ago that "soon" or "shortly" could be months. It's already been a month. It could be months more.

Patience grasshopper?

Well, what else can you do?

Alternative treatments are looking more and more promising. Trouble is, during the initial period prior to being diagnosed with RA, I tried a number of alternatives, and not only did they not work, some made the pain worse -- Stop Pain for example doubled or tripled the pain on the meter, for example.

Now I'm studying Hulda Clark's protocols for RA treatment (liver and kidney flush, zapping, major lifestyle and dietary changes) and find it somewhat amusing because what she says is that this will work "temporarily" and the way she describes it "working" is essentially the course RA pain flares take -- whether or not you're being treated with standard medicine or alternatives or nothing at all. You have generalized joint pain which evolves into specific joint (or pair of joint) pains which can travel from joint to joint over the course of the flare, and it will typically last for about five to seven days before fading, sometimes even disappearing, until it happens again, which can be anywhere from a week to a month (sometimes more) later. That's how it works. Standard medications -- at least in my case -- were able to control the pain and flare outbreaks relatively well for about a year. Now, I think the doctor believes she's almost out of options as most of the standard medications in the pharmacopoeia have been tried and have ultimately failed. Time for the big guns.

Hulda Clark's protocols, as far as I can tell, actually have no effect on the course of RA at all. Because they are rather complicated, however, and they involve peripheral issues (such as searching for hard-to-get ingredients, preparing and consuming cleansing formulae on a strict schedule, completely changing lifestyle and diet, etc.using a proprietary electronic device -- Zapper -- to kill internal parasites and bacteria) they might be serving in the place of placebos, and from that perspective, they may actually help some patients by diverting their attention from the pain they're experiencing.

Because I can have a severe allergic reaction to walnuts and coconut, two of her required cleansing ingredients, I can't do the organ cleansing she recommends. But there's no indication that even if I could do it, it would have any effect on RA and the pain involved.

That remains the same no matter what you do.

A lot of it is mind control.

Which I don't discount. It can work. For a while, anyway.

But it seems to me that for Hulda and her devotees, the real objective is cultish, not corrective. Basically, by doing all these rituals and observing certain protocols and systematic lifestyle changes, you are put in charge of your condition. It can't really change or affect the condition, but because it is no longer something outside you, but is now inside, you will have a feeling of control over it that you didn't have before. Any failure of the protocols to work is effectively your own fault ("you aren't doing it right") and it's up to you to follow the protocols more strictly, among other things.

Because others are attempting to do the same thing, you have a community of strivers, which can be a benefit compared to the lonely struggle someone attempting the medical route (and failing) might have to endure.

We'll see.

Meanwhile, on the plus side, I've set out trays and trays of Cherokee Purple tomato seedlings. It's a constant struggle to keep them alive and healthy because it is still early enough in the season that overnight freezes are possible (for example tonight) and our feral cat colony is fascinated with these plants and some of its members have taken every opportunity to overturn the trays and destroy the seedings. We've lost surprisingly few, though. So that's good. On the other hand, at our altitude, it is difficult grow tomatoes from seed, so we'll see how this first effort goes. I planted the first group of seeds on March 18; the seedlings from that planting are OK, but they are still very small, almost stunted. Ones I planted after -- at the end of March -- are doing better, are larger, and they appear to be healthier. Interesting.

Learn something new every day.

Rough Times 2

I've been going through a difficult period with my rheumatoid arthritis. I told my cousin in California that so many people have it so much worse than I do (including her older sister) and it's not for me to complain (much) about the state I've been in lately.

Primary problem are the "flares" -- episodes of joint inflammation and pain that come on suddenly and aren't controlled by medications. My regular medications have little or no effect on flares, but until these latest episodes, I haven't had flares for more than a year. What's triggered it this time is unknown. I have my theories, but they're more speculation than anything else. I have not been prescribed any pain medication which is interesting. I've temporarily and sporadically self-medicated with left over prescription pain killers from previous episodes of sciatica, and they work sort of. Sometimes.

The doctor wants to put me on infusion treatment with rituxan which is apparently primarily used as a cancer medication. I don't have cancer (knock wood) but my rheumatologist is concerned enough about the return of flares -- and their persistence -- that she thinks it's time for something more heavy-duty.

I'm agreeable enough, although it will be very expensive all in all (I'll still be taking my regular meds, and I'll fall into the Medicare  Part D "doughnut hole" shortly which will mean out of pocket medication expenses of $700 or more per month. We can perhaps barely afford it. But many other expenses will have to be put on hold. I know any number of people are paying much more than that out of pocket for their medications. Thankfully, Ms. Ché has no out of pocket expenses for her meds, including insulin, the price of which has skyrocketed like so many other life-saving medications.

Ms Ché and I went to Los Alamos yesterday, and when we came back I was in so much pain I could barely walk. The pain persisted overnight, but it shifted from my lower extremities to my right shoulder after I took a pain pill. There it stayed till morning when I took another pain pill and the pain moderated somewhat -- at least enough for me to use my right arm (carefully.)

The doctor says the rituxan could make my rheumatoid arthritis condition go into remission, and that's why she wants to try it as she doesn't want me to keep going through these flare episodes.

My sister had lupus (a condition related to rheumatoid arthritis) for the last 20 years of her life, and from what I've learned -- including from my doctor last week -- the pain can be much worse and much more difficult to control than what I've been going through. Yes, I know she was sometimes in excruciating pain for which she got no relief most of the time. She just had to wait for it to pass. I didn't understand the condition she had at all, but now I think I do. Or at least I understand it better. My sympathy for her is stronger to say the least.

So we carry on. What else can you do?

Yes, onward!

Why Wypipo Are Dying

I've been reading this deeply flawed Brookings study (60 pg pdf) on morbidity and mortality in the 21st Century. It has so many problems it's almost useless, but it nicely fits the narrative of suffering, despairing rural white folks -- who elected Trump in their misery -- that it's become something of a go-to "proof" that white folks are dying in their multitudes (ostensibly from despair at their future-less lives.)

The statistics do not support the conclusion. The  simple facts don't. But don't let that stand in the way of a good narrative.

The primary issue for the authors is the increase in opioid addiction leading to overdose deaths in rural America -- even though it is not the leading cause of death, but so what. It involves drugs, and everyone knows drugs are eeeeeevil.

There have been any number of reports that parts of rural (white) America have been flooded with prescription opioid pain killers; millions and millions of doses sent to pharmacies in areas that have populations in the tens of thousands if that. Surprisingly, these areas then experience a spike in opioid addiction and overdose death. How interesting.

The authors of the Brookings study, however, are careful to hold harmless the prescription drug manufacturers, pharmacies and doctors in those areas. The problems associated with opioids are entirely on the shoulders of the patients who, apparently, falsely claim to be in pain in order to procure a scrip, then trade the meds among themselves. Or something.

It really doesn't make sense given the already restricted access to opioids and other narcotic pain medications. And at least 9 times out of 10, patients presenting with pain are in pain, not "despair," real, physical pain, and the medication is intended and used for pain relief.

Yet the narrative says, "No, no! These people are not in physical pain. They suffer from Wypipo-despair!"

OK.

Interestingly, in other drug abuse frenzies (the crack epidemic, the crank era) nobody cared a whit about the why of such drug use. They wanted to see the users and their unpleasantness eradicated forthwith.

And so it was with the ever-present War on (some) Drugs and (some) Drug Users.

Now, though, the issue is Salt of the Earth Wypipo in rural communities who voted for Trump and all of a sudden, treatment, love and compassion for the despairing victim-users is the general  attitude toward the Unfortunates.

No war on these people and their drug use at all. No sirree.

Except.

Well, there is an exception. What is being proposed and in some cases enacted are further tightening of the restrictions on the prescription and dispensing of opioid pain medications.

In other words, the point is not to "help" the victims -- poor, rural Wypipo that they are -- the point is to make it difficult or impossible for people in pain to legally obtain opioids for pain relief. There. That should solve the problem, right?

Jeebus.

In some areas it is already nearly impossible for people in pain to legally obtain opioid or other narcotic pain relief medication because doctors are terrified of the DEA and refuse to prescribe it -- or any effective medication for pain.

They refuse outright and patients are left on their own to find medications to deal with their pain -- or just live with it. Too bad, so sad. The proposed additional restrictions and prohibitions will simply mean that more people in pain will be refused medications to alleviate their suffering.

I think that's the point of the narrative. "Suffering is good for the soul," right?

Whatever else Our Rulers want to do, they want to impose sufficient suffering on the Rabble to keep them in line, and they want to punish anyone who gets out of line.

That's Doctrine.

Of course I have a personal interest in these things. Until recently, pain associated with my condition was fairly well controlled without specific medications for pain. But about two weeks ago, I started having what they call a "flare," something that hasn't happened since before I started treatment, and it lasted a good long time, despite attempts to mitigate/control the pain with steroids. I received no pain medication at all.

Steroids alone were supposed to be enough to control the pain, but they weren't. What was happening was that generalized joint pain would concentrate in one joint or pair of joints and at one point I could not walk because of the intensity of pain. Standard pain killers like Aleve had no effect.

As it happened, I had some left-over pain medication from a previous bout of sciatica, and sure enough, within minutes of taking it, the pain was controlled.

But it's an opioid, and it was never offered by my doctor -- nothing was -- for pain relief, only the steroids, which did not control the concentrated joint pain that made basic functioning impossible.

According to what I'm being told, my condition has "evolved" into a new and more serious phase that requires more aggressive treatment with stronger immunosuppressants an other drugs that can have serious or fatal side effects. But that's how it goes. I'm not as concerned about that as I am about being stuck in a painful situation (another "flare" for example) without access to effective relief.

Given the urge of policy-makers to further restrict or prohibit the use of opioids for pain relief, I wouldn't be surprised...

[This Politico article explores some of the criticism of the Brookings study. Still, the general thrust of it is accepted.]

1917

1917 was the year that my mother, her mother, and her step-father came out to California from Indiana, changing their lives and future forever.

My mother said she remembered very little about her natural father -- or Indianapolis, for that matter -- but as I've written elsewhere, after doing a lot of research, I don't think she remembered her biological father at all. He was gone from Indianapolis, establishing a new life and family in St. Louis, by the time my mother was two years old. She could have had some vague memory of him, I suppose, but it's not likely. Also, her mother sued my mother's father for divorce in the summer of 1912, when my mother wasn't even a year old. The parents were not living together at the time and it's possible they never lived together as man and wife.

I always thought that Leo, the man who became my mother's stepfather, was Irish-American, but in fact his grandparents were German. I'm pretty sure my mother thought he was Irish, too. Maybe he pretended to be Irish for the hell of it. "Passing" as it were.

Leo was definitely a romantic, and he must have believed that something wonderful was inevitable. He worked as a machinist in Indianapolis, but when he went out to California, he worked as a mechanic at the Dodge Brothers dealership in Santa Maria -- after a brief sojourn in Santa Ana, the end of the line for the railroad that brought him and my mother and her mother to California. Leo and Edna (my mother's mother) were married in Santa Ana in October of 1917. Edna stated on her marriage certificate that she was a widow. Leo claimed it was his first marriage, but I've found records that suggest he was married before in Kansas City where he lived for about ten years, married, if he was married, to a woman who died in an asylum in 1921. I found no record of a divorce, and it is possible he was still married to her when he married Edna in Santa Ana. Which would be ironic as hell, since my mother's biological father had another wife and family in St. Louis when he was killed in that rail yard incident. We won't even get into my mother's grandfather, shot and killed by his mistress when he threatened to leave her...

As far as I can tell, Leo did very well for himself and his family in California. He became the service manager at the dealership, he was able to buy a nice bungalow a few blocks from the shop shortly after he started work, he had a car of his own, and my mother said he always provided very well for her and her mother. All of this would have been almost impossible had they stayed in Indianapolis among the suffering and seething working class.

But sometime in the early '30s Leo quit his job at the dealership and bought a filling station which he ran profitably for a while. He sold that and bought a motor court cum filling station in Willits on the Redwood Highway which he operated until 1939 when he sold it in order to invest in a "mine" in Nevada -- a phony mine as it turned out. He lost everything, and I think he just barely escaped going to jail for fraud, though it didn't appear that he knew that the partners in the mining operation were engaged in swindling their marks, chief among them Leo.

Leo and Edna returned to California in 1941, where he went to work at the Mare Island Naval Shipyard building Liberty Ships for the War. Edna was sick with the cancer that would shortly kill her. Leo himself died in 1945, still working at Mare Island.

1916 was the year that started this sequence. My mother's father had been killed in a rail yard incident in St. Louis in December of 1916 -- actually just before Christmas. His funeral was on December 23. My mother said she remembered going to his funeral (she was five) but she never mentioned St. Louis. I think she "remembered" all of this happening in Indianapolis. She never mentioned the trip to California, either, but she had strong memories of living in Santa Maria from a very early age -- she was still only five years old when they arrived.

She considered herself a California girl for the rest of her life  -- even though she was born in Indianapolis. She never really wanted to live anywhere else, and if she'd had her druthers, she'd have stayed on California's Central Coast the rest of her life.

1917 was the year the US entered WWI, and although I only heard about that  from my father -- he was a junior officer on the Home Front in Iowa during WWI -- I think the War was a critical element in the decision of Leo and Edna to move to California. The opportunities were greater on the West Coast, or seemed to be.

It was a risky move as I doubt Leo had a job lined up before the departure from Indianapolis. But what did it matter? There would be plenty of opportunities once they got there. And so it was to be.

Dumb luck? I don't know.

At any rate, he did well, and he would have been wiser to have stayed in his position rather than going out on his own with his filling stations and disastrous mining adventure. But I can imagine his romanticism informed his vision. He couldn't believe he could fail.

Of course I didn't know either Leo or Edna, let alone my mother's father, as they had all passed on by the time I was born.

In fact, all my grandparents were dead by the time I was born. At the time, it was a fairly unusual situation, as nearly everyone had grandparents. I didn't.

Not having the anchor of grandparents -- among other things -- has helped differentiate my point of view from that of many people who did have grandparents. I see and experience things somewhat differently than most people, and I always have.

1917 -- and WWI -- are considered the era when the US "came of age." That is another topic for another day, but I would agree there's something to it. Given the devastation in Europe and the creation of the Soviet Union, the impending collapse of the global economy and the breakup of the European Imperial Projects, the role of the US in world affairs had to change. It did. We thought for the better, but recent events -- say, over the last 60 years or so -- bring that into question.

We (collectively) seemingly aren't better at all. In fact, many of our collective worst aspects are on display. There's little or nothing "good" about it. And our model is being adopted widely.

I don't know that Leo learned his lesson with the collapse of his mining venture, My mother had nothing good to say about him afterwards, but I didn't know him, so I have nothing to base an opinion on. The indications prior to the collapse all seem positive, so whatever happened afterwards I think would have to grow out of that.

Much the same can be said for the US -- many, many positive indications that go haywire toward the end.

We'll see.

[Note: this post has been difficult for me to write,  not so much for the topic as for the continuing problems I'm having with my condition. For the last week or more, I've been experiencing an RA "flare" that has been very painful and debilitating, and has been devilishly difficult to control. All part of the disease they say....]

OT:: The Diagnosis

The coming diagnosis, let's put it that way. My various physicians have me on a kind of diagnostic treadmill, checking off one thing after another ("Nope, not that!") and going on to the next. It took months, for example, to confirm I had rheumatoid arthritis and to come up with a treatment routine that seems to be working pretty consistently for joint pain and swelling.

They've checked me for cancer (multiple myeloma) -- so far no sign. Yay.

Now the question is what's wrong with my lung(s). Breathing problems and fatigue have been getting worse. I can feel the pressure of a "growth" in my lower right chest (this may be in the lung or it may be due to a hiatial hernia, more about which in a bit), and at times I can barely be active at all -- say walk for more than a few dozen yards, or even stand upright for more than a few minutes -- without becoming exhausted.

Hm. So what's going on? The pulmonary function test showed that everything was more or less normal, except... I had severely reduced lung capacity. I think it topped out at 38%. The pulmonologist declared confidently, "Welp, that because you have pulmonary fibrosis due to RA; your rheumatologist should treat it aggressively steroids." He added that I have emphysema, too, from smoking -- which I knew from years ago -- but that it was not severe (I think he called it "mild") and it was not a significant factor in my breathing problems.

My rheumatologist did not entirely agree. She thinks emphysema could be a bigger factor than the pulmonologist believes, and if that's so, it wouldn't be wise to treat me as if pulmonary fibrosis is the leading cause of my difficulty. She also said that if I had extensive pulmonary fibrosis due to RA, she would be obliged to treat that very differently than the treatment I've been receiving for joint pain and swelling. She didn't say how she would treat it differently, but only said she wanted me to go to the National Jewish Health in Denver for a thorough respiratory assessment and diagnosis.

I've been in contact with  them and they are working out appointment availability and which department to assign me to and so forth, but truth is, I'd rather not go -- not in the middle of winter anyway. There has been no snow so far; the weather hasn't even been particularly cold here in central New Mexico, or up in Denver. But that could -- probably will -- change. They were talking about a February appt but said they'd try to get me in sooner because I'm out of state. We'll see.

Meanwhile, I had a follow up CT scan last week. The results were posted Tuesday. I'm still digesting the findings. A lot of it is written in clinical jargon some of which I don't understand, but the upshot I gather is that the radiologist who thought the signs were ambiguous in May now thinks the signs are quite clear that I have pulmonary fibrosis in my right lung, that it has spread from the lower right lobe to the mid lobe, and that it is probably though not absolutely certainly due to RA. There is some mild to moderate emphysema particularly in the upper left lobe (which is essentially the same diagnosis I received in May and what I was told when I had a scan in 2010 due to one of my periodic bouts with pneumonia.)

So I do a little research with the Goggle and discover that pulmonary fibrosis is indeed one of the possible complications of RA, that it is irreversible, and as it spreads it becomes fatal. There is no treatment, at least none that can control or reverse the progress of the disease. The only things Medical Science can do are palliative. Oxygen, for example. Or a lung transplant. Which, due to my auto-immune condition (RA), would probably not be indicated.

Alrighty then.

I'm not in a tailspin about it, and I probably won't be. When I told Ms Ché what this situation was looking like, she was momentarily stunned, and then took the tack, as she always does, that this is just another challenge sent our way, and we'll get through it. No matter what. Bless her heart.

As far as I'm concerned, que sera sera. I'm not in any particular pain, thanks to the medications I've been taking for RA. While I'm conscious that there is something happening in my chest, it doesn't hurt at all, it's merely uncomfortable sometimes when I lie down. Fatigue is a real problem and is getting worse, but I have means to cope with that. (I'm old, I take naps. OK? ;-)

So in a lot of ways I feel extremely lucky, even if I don't have much longer before shuffling off this mortal coil. According to what I've seen in my research, unconfirmed by my physicians at this point, the prognosis is that I have perhaps months, perhaps years before the fibrosis makes it impossible for me to take in oxygen from my lungs -- and I die.

Hm.

We all gotta go sometime, and in my view, passing from this plane is a part of the circle of life. It's one stage on a journey, and for all we know, it's not the last stage.

So. As things clarify, I may have somewhat more to say about The Journey.

In the meantime, be good to yourself and one another.

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.]

Old and Ill...

I got doctored yesterday for the umpteenth time. Part of an ongoing assessment of my condition(s) of old age and cussedness, as well as Rheumatoid Arthritis (RA), COPD, and potential other complaints.

Finally got a pulmonary function assessment which was ordered months ago by my rheumatologist. Understanding what's going on with my lung(s) is a key to understanding some of the rest of my physical difficulties.

Fatigue has become my most aggravating problem. I simply cannot do what I once could because I become exhausted within a few minutes. We found out part of the reason why yesterday.

The pulmonary function test is no fun, but I'm glad I did it. It showed that I suffer from mild COPD, but also a severe reduction in lung capacity which the pulmonologist determined was due to RA not COPD or emphysema which CT scans determined I had acquired from smoking years ago.

He advises aggressive treatment with steroids for the RA to get a handle on diminished lung capacity.

Oh.

I've been warned repeatedly and insistently about the hazards of steroids, particularly bone loss, diabetes and other side effects, and my rheumatologist has been reducing my dosage of prednisone while providing me with other medications that seem to work pretty well at controlling RA joint pain and swelling. Now I'm being told to use a steroid inhaler -- albuterol (which I have but have never used) -- due to diminished lung capacity.... well, what to do, eh?

It's one of those conundrums which I guess I'll just have to face.

Note: generally speaking, I feel pretty good. The problem I have not been able to resolve is fatigue, and figuring out what to do about that is going to take a bit of resourcefulness.

Then there was the brochure on COPD I picked up yesterday that was all about hospice care, ventilators, end of life decisions and whatnot. My oh my. Well, I'm not quite there yet.

Getting Doctored

I'm still in the early stages of evaluation by a host of specialists trying to get a handle on my condition(s). This will probably go on for at least another 6 months or so, possibly indefinitely, because there is no cure for what ails me, and keeping watch is the best they can do.

I've been getting lots of xrays and blood and urine tests to keep tabs on what is going on. A new test or follow up essentially every week for the time being. Certain markers show up regularly that indicate this or that condition, but nothing is severe enough to warrant alarm. Yesterday, the oncologist, for example, declared me non-cancerous for now, based on those tests which show the presence of a condition to be monitored (MGUS) but nothing else.

Major problem is rheumatoid arthritis and its effects which seem to be spreading and are only marginally under control. This is proving to be a challenge to say the least. I take prednisone which usually controls the pain and inflammation, but sometimes doesn't. I also take leflunomide, which doesn't seem to do anything. Previously, I was taking sulfozine, which also didn't seem to do anything. The rheumatologist is trying various medications, starting with the least expensive, to see what works. We haven't quite hit on anything except prednisone, which supposedly is dangerous over the long term even at the low dose I've been taking (10-15mg daily).

In addition to joint inflammation and pain, I experience extraordinary levels of fatigue regularly. RA is also suspected to be causing or worsening lung inflammation which contributes to fatigue in a vicious cycle, round and round.

Then there's COPD which is diagnosed independently of RA for which I need to see a pulmonologist. Next time for that is October when more tests are scheduled to see just how bad it is.

I was looking through some notes I kept as this journey continues, and it seems that I was doing better in May than I am now. I'd say there's been a slow-but-steady deterioration since then. The pain is mostly controlled, my range of motion is relatively good, but my overall ability is declining. Day-long activity is simply not possible any more. 20 minutes at a time is about the most I can manage and then I must rest for at least as long.  Naps are essential. I limp from sciatica from years ago but it's been getting worse. I get out of breath with almost any activity of more than a few minutes. Though I've tried not to, I've been gaining weight again -- a side effect of prednisone they say. That just makes things more difficult.

And so it goes. At one point I asked one of the doctors, don't remember which one, "What's going on? Why is this happening?" The answer: "You're getting old, and what's happening is more the consequence of old age and genetics than anything else. Compared to a lot of people, though, you're doing well. Just keep that in mind."

I do. Of course I have friends who say if I hadn't had such a wild youth, more'n likely I wouldn't be having all these issues in my dotage. It all comes from my bad living when time was. Then there are the others who are convinced it's all karma, results of things I did or didn't do in previous lives together with my own actions in this one...

Genetics (a form of karmic debt I suppose) enter into it, especially with regard to RA, because my sister had lupus, which is a related auto-immune condition. I assume the propensity came from our mother, though as far as I know, she didn't suffer from auto-immune conditions herself. She had thyroid issues and mental health issues, however, which may or may not have been related. She died of emphysema after a lifetime of smoking. She never quit.

I quit smoking 20 years ago, but I've been diagnosed with "mild" emphysema along with COPD, so I haven't escaped that consequence of smoking tobacco.

Both my sister and brother died of pulmonary embolism, both at a relatively young age: my brother at 32, my sister at 59. I'm not sure of exactly the cause of my brother's embolism, but the indications I got from his care givers and his death certificate are that he lapsed into a coma an was taken to the hospital where he died a few days later. The clot was probably due to his inactivity/paralysis.

On the other hand, my sister's embolism followed knee surgery that in turn followed injury in a prison/mental hospital where she worked. She died as a consequence of the injury and surgery. No doubt about it.

As for cancer... my father developed melanoma which he refused to have treated, and he died within a year, age 67. My mother's mother died of what I was told was stomach cancer, age 52. Her mother died at age 76 from uterine cancer. I've recently learned that from her death certificate. Previously, I didn't know what had happened to her, and from accounts by my sister, who claimed to have met her great grandmother when she was about 7 or 8 years old, I had always thought that Ida (my mother's grandmother) had died after 1940. Turned out, though, she died in 1935, and so my sister could not have met her as my sister was born in 1933 and wouldn't have remembered her if she did meet Ida -- which I strongly doubt. I wonder who she met who she thought was Ida...

My mother's father died in a railroad incident when he was 38; he didn't have time to develop killer diseases and conditions, I guess. As his mother died in 1918, I suspect it was from the Spanish flu. His father died in 1921, and it may have been from the same cause, though I don't know.

So those are some of the histories I'm dealing with. As I've noted before, a lot of my relatives died at a relatively young age, and right now, I'm older than most of them when they died -- wild youth or no.

This actually gives me pause. If I have lived longer, perhaps there is a reason.

On the other hand, I never thought I'd live past 30. So every year since then has been kind of a bonus, no?

Quien sabe...

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,

Survival Notes... As It Were

Sometimes I feel like I'm in a strange stringy soup of one health crisis after another. It's a bizarre feeling, especially when I've got friends who insist that if I hadn't drank and smoked and whored around when I was young and believed myself to be invulnerable, I wouldn't be in this condition now.

Well, may-be, but I'm not convinced. It is something that certain preacher-men like to retail to their impressionable flocks, though -- as they drink and smoke and whore around the way they do.

I'm not in as bad shape now as I was a week or so ago, so there's that. I had a CT scan -- without the iodine dye which I'm deathly allergic to -- last Tuesday, and the extensive report came back very quickly:

There are two masses in my right lung that look like "chronic inflammation" and evidence of "moderate emphysema" in both lungs. I knew about the emphysema from a CT scan five years ago when I was suspected of having TB -- because of my pneumonia symptoms and because the flow chart showed I'd been to Mexico (except I hadn't, I'd been to New Mexico). It apparently hasn't gotten worse. Yay. I haven't smoked in almost 20 years, so at least I haven't been adding more tobacco smoke to my lungs. In fact, I can't stand to be around tobacco smoke any more.

I'm somewhat puzzled and intrigued by those "masses" however, It's possible they've been there all those years, too. But as I researched the chronic inflammation aspect, it turned out that that is actually a potential consequence of rheumatoid arthritis and/or other autoimmune conditions, as is indeed pneumonia. Oh.

So it's quite possible that the double whammy -- RA and pneumonia -- that I went through for the past couple of months was all of a piece, not separate illnesses that just happened to strike at the same time. And it's likely I will continue to be vulnerable...

OK. Getting used to this.

Or at least learning. Interestingly, my PCP suggested that the interim treatment for RA (prednisone) was contributing to the persistence of pneumonia as prednisone acts as an immunosuppressant. Interesting because a routine treatment for lung inflammation due to autoimmune conditions is... prednisone.

I guess finding the balance is the issue.

I asked for and received a prescription for "low-dose" prednisone, and it seems to be working out reasonably well. I no longer have pneumonia symptoms (yay!) and whatever pulmonary inflammation there is seems to be under control. The doctor prescribed inhalers -- which are complex to use, whoa -- for breathing difficulties, and now, in addition to follow up with a rheumatologist, I'll be seeing a pulmonolgist, too.

So. Moving right along...

But I loathe being ill.

Bleah...

RA

I'm coming to grips with an impending diagnosis of early stage rheumatoid arthritis as soon as my doctor gets around to coordinating and evaluating the avalanche of test results that have come in this week.

It's hard to state coherently how much pain I've been in for the last several months, but it has periodically been severe and debilitating. Joint pain. It began with two episodes of general joint pain -- involving practically every joint -- last summer, pain which did not respond to pain relievers -- aspirin and naproxen -- that I had been taking. My doctor recommended that I try ibuprofen, which I did, and sure enough, it seemed to help. On recommendation by a relative, I tried turmeric curcumin which also seemed to help.

After the second episode of general joint pain, the problem became one of a pattern of periodic joint pain that would center in one set of joints after another. Ibuprofen continued to control the pain until mid January of this year when the inflammation and pain seemed to concentrate in my hands and wrists and the pain was nearly constant no matter how much ibuprofen I took. I was up to as much as 2400 mg per day, and still would wake up in the middle of the night needing more.

I'd stiffen up during the night so much it would take hours for me to unstiffen enough in the mornings to even brush my teeth.

Finally the pain became so bad and so constant that I tried an old left-over prescription of Tylenol and codeine that I'd gotten years ago for back spasms. I hated taking it then, and I didn't want to now, but something had to be done. It controlled the pain long enough for me to get some sleep, so that was good. The side effects were still unpleasant, though, and I didn't want to rely on it for pain control.

So it was time to see the doctor again. After hearing what I had to say about what had been going on, the doctor ordered a raft of blood tests, x-rays, and suggested this was probably an auto-immune issue, not osteoarthritis that is caused by degeneration of joints.

She also prescribed an anti-inflammatory drug diclofenac -- which I'd never heard of -- which she said I must not take with ibuprofen. In fact she said over 800 mg a day was ineffective anyway. Oh, well. I beg to differ, but that's another issue for another day.

The anti-inflammatory helped right away. I'd s say the pain in my hands and wrists was 60% controlled almost immediately, and by the second day of taking it, the pain was almost gone for most of the day, though there was still a good deal of stiffness and swelling.

Then the test  results started coming in. At first they were ambiguous, suggestive of an auto-immune issue, but not clearly pinpointing it.

Then results came in that confirmed a  diagnosis of rheumatoid arthritis with an possible other autoimmune component on top of mild osteoarthritis.

Understanding what it is is taking me a while. My sister had lupus for the last 20 years of her life, and I really never knew what it was. She was periodically in intense pain, but she seemed to be getting along reasonably well at other times. Medication helped, and after the first few episodes, the pain seemed to diminish though it kept coming back.

My doctor tested for lupus, and that's the other autoimmune component that appears to be confirmed.

I'm noticing that the anti-inflammatory's effectiveness appears to be diminishing. From 60% control, it's down to about 40% and overnight stiffness and pain seems to be returning in force.

I'm not the world's best patient, so this is going to be an interesting time.

I'll try not to be too self-pitying!