Communion Of Dreams


Machado-Joseph Disease: not immune.

I just spent about 20 minutes sitting on a toilet. And so far this morning, a total of about an hour doing that.

TMI? Yeah, sorry. But I mention it because it has demonstrated a truth of which I was only partially cognizant of previously: there is no immunity from other illness when you have a chronic disease.

I mean, I knew this, but until you live with it, it’s not something you think about a lot.

See, a couple of weeks ago I started to notice a pattern of gut-grumbles I don’t normally experience. And about ten days ago it resolved into something I thought I recognized: giardiasis. Twenty+ years ago I had a bout of this, likely picked up from tainted water on a camping trip. Where I got it this time, I have no idea.

But after recognizing the symptoms, I contacted my GP clinic and got in to see a doc. Who did the necessary exam, discussed options with me, ordered the appropriate tests, and prescribed a powerful antibiotic which is the standard treatment for giardiasis, and which cured me the last time. I’m now in day 7 of that treatment, and while there are *some* indications it is working, well, I still wind up sitting on the toilet with nasty spasms every 6-8 hours or so, unless I really load up on OTC anti-diarrheal treatments. Even so, I don’t dare get very far from a bathroom for very long.

Of course, through all of this, I am still experiencing the random rotation of MJD symptoms. Joy. Now I have TWO reasons to compulsively check my health/testing accounts: to see if the MJD test results are in, and to get confirmation of the giardiasis. Because yeah, even though tomorrow will be seven weeks since the genetic test samples were collected, I’m still waiting on those results.

No one who has lived with a chronic disease will find any of this surprising. They know that it just goes with the territory. Hope you never have an opportunity to experience it for yourself.

Me, I’m going to take some pro-biotics and get a nap. Maybe the test results will be in after.

Jim Downey

Edited to add several hours later:

Spoke with my GP’s office. Turns out I did have giardia, but happily there was no sign of c. diff, which was a possible concern. So after a week of taking Flagyl, I can now stop that (that alone was probably part of the ongoing spasms & diarrhea) and work to get my system working normally again. That means increasing my probiotics, getting back to normal eating habits (with my relatively high fiber diet), and taking it easy just to let my body recover.

So, no news yet on the MJD test, but at least this other problem should resolve in the coming days.

JD



Get a grip. Or make one.

[For the AI’s own inscrutable reasons, Facebook considers my ballistics blog “spam”. Unable to get it resolved, I’m going to post partial info about new blog posts over there, here, so people can link it off FB. Please just ignore if shooting stuff isn’t of interest.]

A couple of weeks ago I posted about finishing a Liegi Derringer kit, then doing the laser work to customize the grips. It turned out well enough, so I decided to finish and laser a second kit, to use as a door prize for a black powder workshop I’m doing at the annual meeting of the Liberal Gun Club this fall in Las Vegas.

All went well until the time came to mount the grip to the receiver. The top mounting screw went in fine, after drilling a pilot hole. But the bottom one broke loose as I was tightening it. I took the top screw back out so I could see what the problem was. This is what I saw:

Almost looks like a tiny wooden shoe from this angle, doesn’t it?

[The entire post about this project can be found here.]

Jim Downey



Machado-Joseph Disease: I’m W A I T I N G !

Tomorrow will be five weeks since the blood draw for my MJD genetic test.

I just checked (for the fifth time so far today), and neither my patient portal for the Neurology Clinic at the local large-institution university hospital which shall remain nameless now the diagnostics lab that handled the test has results back yet.

>sigh<

I don’t really have much to say that I didn’t say two weeks ago in this post, other than the fact that it’s been two more weeks of waiting. Everything there still applies.

But I wanted to whine a bit.

Not that it will do any good, other than allowing me to vent my spleen.

Which sometimes is enough.

Barely.

Jim Downey



Lookin’ Sharp(s).

[For the AI’s own inscrutable reasons, Facebook considers my ballistics blog “spam”. Unable to get it resolved, I’m going to post partial info about new blog posts over there, here, so people can link it off FB. Please just ignore if shooting stuff isn’t of interest.]

As anyone who has read much of this blog probably knows, I (and the other BBTI guys) like weird guns. Anything that is innovative, or unusual, or uses a transitional technology, is likely to catch my eye.

One of those I got to try this past weekend is a reproduction Sharps Pepperbox. It was designed by Christian Sharps (of Sharps Rifle fame) in the middle 1800s , and proved to be a popular little hide-away gun in early .22. .30, and .32 rimfire cartridges.

In the 1960s Uberti produced a little .22short reproduction with a brass frame and plastic grips. Here’s one recently listed on Gunbroker which has an excellent description of both the reproduction and the original: Uberti Sharps Pepperbox 4 Barrel Derringer.

And here are some pics of the one we shot this weekend:

[The entire post about this little gun can be found here.]

Jim Downey



That takes balls, Part 2: rebound!

[For the AI’s own inscrutable reasons, Facebook considers my ballistics blog “spam”. Unable to get it resolved, I’m going to post partial info about new blog posts over there, here, so people can link it off FB. Please just ignore if shooting stuff isn’t of interest.]

Last week I posted about a little Liegi derringer that I finished and did a laser design on. Well, over the weekend I got together with the BBTI gang and, among other things, had a chance to shoot and chrono the little gun.

Here’s a short slo-mo vid of shooting the Liegi:

[The entire post with pics of shooting this little gun can be found here.]

Jim Downey



That takes balls.
July 17, 2022, 2:08 pm
Filed under: Ballistics, Connections, Guns, tech | Tags: , , , , , ,

[For the AI’s own inscrutable reasons, Facebook considers my ballistics blog “spam”. Unable to get it resolved, I’m going to post partial info about new blog posts over there, here, so people can link it off FB. Please just ignore if shooting stuff isn’t of interest.]

I recently picked up a little Pedersoli Liegi Derriger kit. One of the other BBTI guys has one of these things, and I’ve always considered it a cool little piece of firearms history. Cap & ball firearms technology came along in the early part of the 1800s, supplanting flintlocks and earlier ignition systems. The Liegi design was very popular as a basic pocket/boot/muff small handgun, because it was relatively easy to load and carry, and lethal at close range.

[The entire post with LOTS of pics and info on making this little gun can be found here.]

Jim Downey



Machado-Joseph Disease: three weeks.

It’s now been three weeks since my blood samples got to the testing lab to do the genetic test for MJD.

And I’ve just checked, for the fourth or fifth time today, to see whether the results have been posted to my account on the diagnostics site. They haven’t.

I’ll check a few more times today. And though it’s unlikely that the results would be updated over the weekend, I’ll probably check several more times tomorrow and again on Sunday.

Not that I’m obsessing, or anything.

No, really.

It’s just that in an era when I have literally a dozen 15-minute tests for Covid in my bathroom, when a standard blood panel workup will be done in a couple of days, and when almost any other test results I can think of would be available in a week or so, waiting three weeks seems … excessive.

NORD (the National Organization of Rare Diseases) says that typically, a correct diagnosis for someone with a rare disease (such as MJD) will take upwards of five years. So I suppose I should just consider myself lucky that I know what to look for, and to have the resources to push for the test and get it ordered. A few weeks of waiting for the results are, in the big picture, a minor annoyance. But still, it *is* an annoyance.

Several friends have asked me what the next step is, once I get the results.

That depends on what the results are, of course.

If the genetic test shows that I fall in the zone of either possibly developing MJD (an intermediate number of CAG nucleotide repeats in the relevant DNA segment) or over the threshold considered to be definitive for MJD, then I’ll find a local neurologist who will be willing to work with me to monitor and manage the disease. No, there’s no way in hell I’m going back to the Neurology Clinic for the local large-institution university hospital which shall remain nameless, if I can avoid it.

If the test comes back and rules out MJD (I consider this unlikely, but it is possible), then I need to think about what to do. I just turned 64, so a year from now I’ll qualify for Medicare, and it might make sense to just wait until I have that before starting a series of additional neurological tests. Particularly since if I don’t have MJD, there’s really only one other thing that would explain my symptoms over the last year: CTE. That’s a diagnosis that can only be made during an autopsy, and I’m not ready for THAT test just yet, thanks.

Either way, I’ll probably continue to just manage my symptoms as best as I can, and get on with life. I’ve now experimented with enough different MMJ products to have a handle on what helps and what doesn’t, related to method of ingestion and dosage. Turns out that smoking/vaping has little or no benefit for me in dosages low enough to not trigger all my MJD symptoms, but both tinctures and edibles do have some therapeutic benefits. Small dosage edibles help me sleep longer, with less use of opioid Rx meds. And a mild dosage of tincture seems to very quickly stop Restless Leg/Arm Syndrome (as a friend said, most people don’t understand just how miserable RLS can be). Just figuring out these two things has made a significant difference in my day-to-day life already. And my balance & flexibility exercises continue to help with those issues.

Just checked: still no results posted.

>sigh<

Jim Downey



Take the long view.

Last fall, I embarked on a long-term project: doing exterior repairs and repainting our 140 year old Victorian Italianate home. As I’ve mentioned previously, this place has been in my wife’s family since the early 50s, and in all that time has basically been white with some color trim work. We’ve decided to change that, and here’s a little before & after from last fall to show you the difference:

I started back on this section of the house for two reasons: 1) it was fairly simple in terms of ‘gingergbread’, so it would give me a chance to work out the color scheme and get used to painting, and 2) the small, almost square window there in the corner actually needed a fair amount of carpentry work, to repair a stubborn leak that had caused some structural damage. I wanted to get that done before the damage got worse.

Anyway, I worked on it for a couple months last fall, until Winter settled in. And I got back to it in May, once the long and strange Spring turned reliably nice enough. I’m now finishing up work on the next major section, and as I’m inclined to do I’ve been posting progress pics on Facebook. And I’ve noticed a curious thing.

My friends have been posting encouraging comments as I go, which I expected (and hey, a little encouragement helps). But occasionally someone will post a comment to the effect that with all that I’ve accomplished, I must be getting close to being finished.

Say what?

Now, partly this is just due to the difficulty in getting a handle on just how big this place is. I mean, it’s no mansion, but it is a big ol’ 19th century farmhouse. It’s big enough that I can’t honestly take a decent pic to give a sense of the size. But take a look at the pics above. Note how there’s basically three different walls there. Got that? Yeah. Now, in total, this place has 20+ such walls (including the ones on the second story that are discrete from the ground floor walls. I also need to completely redo the 10′ wide front steps and railings, as well as the little side porch floor and railings. And about a third of the house has more gingerbread detailing that will take extra time.

Let’s put it this way: I’ll be very lucky if I can get it all done this year. Hell, I expect that it’ll take the better part of next year’s good weather to get it done.

And this seems to come as a surprise to many people.

But that’s not the curious thing.

To me, the curious thing is that a lot of people seem to think that working on something of this scale would be daunting. Intimidating. Scary. Whereas for me, it’s the most natural thing in the world, and not daunting or intimidating in the slightest.

Partly, I think that is just the perspective that comes with getting to my age (mid 60s): you tend to see larger arcs to life.

But it’s also because I’m a novelist. St Cybi’s Well took me the better part of a decade to write. Even discounting the long periods when I was just thinking through the novel, or was otherwise preoccupied, I still spent several years actually writing and rewriting it. I’m used to thinking in terms of taking the long view. Of working a little on a project when I can, slowly making progress, page by page, wall by wall. Here’s where I am currently:

For scale, that storm window is approx. 2′ x 8′.

I should get the repairs and priming done tomorrow, and the rest of the window frame painted on Monday. The storm window itself needs some repairs, then painting. Then there’s an identical one just out of the frame of the picture above.

One step at a time.

Jim Downey



Machado-Joseph Disease: I ain’t no wizard.

“Your love of the halflings’ leaf has slowed your mind.”

— Saruman, to Gandalf. The Lord of the Rings movie.

As I mentioned in my last post:

One of the problems that the industry has (at least in terms of medical use) is that the effects of cannabis are so varied, and standards so inconsistent, that pretty much the universal advice to new users is “just try a bunch of different things at small doses to figure out what works for you”.

So, following this standard advice, when I went to the dispensary for the first time I got a variety of different products. Tincture, edibles, flower, and a couple of pre-rolled joints. The tincture and edibles both have proven promising in my testing, taking the edge off my pain and other symptoms and helping me to sleep better. Last evening before dinner for the first time I tried to smoke some of the stuff taken from a pre-roll, so I could measure it out and be a little more careful about dosage than just lighting up a joint.

I measured out a modest amount, and put it in a glass pipe I’d also picked up. Standard little spoon-style, with a ‘carb‘ (hole on the side that controls airflow). I lit the bowl, drew the smoke into the chamber, and released the carb — and took a deep hit.

The smoke filled my lungs. And immediately I about coughed my lungs out. Hacking, spitting, coughing, tears, the whole 9 yards. Pathetic. But hey, I haven’t actually tried to smoke anything in what … four decades? But clearly, I ain’t no wizard. And I was overly generous in how much to put in the bowl.

Anyway, I went back inside after I recovered sufficiently, and sat down before the effects slammed into me. Good thing, because I was just about useless for the next twenty or thirty minutes. It wasn’t just the high, which I expected. It was also the way it seemed to suddenly multiply all the MJD symptoms I usually experience: vertigo, shaking hands, deep tremors in legs, shooting pain in the arms and feet, difficulty in eye-hand coordination, everything. All at once. About ten times worse than the usual symptoms.

I texted Martha and told her that she needed to take over dinner, that I just needed to sit and ride out the effects for an hour or so. I wasn’t worried; taking psychedelics long ago taught me how to just let the trip unfold without fighting it. The effects backed off and in an hour or so I was functional enough to get up and get some dinner, go into the living room and watch some TV while we ate. The effects then dropped off fairly completely after about four hours.

The worst thing, though? It didn’t do a damn thing for my pain. Oh well.

One strain down, others to try. But only after I get a small vape to allow me to control dosage even better, and take some of the edge off the raw smoke. Live and learn.

Jim Downey



Machado-Joseph Disease: testing time

So, late Wednesday FedEx delivered this:

That’s the sample collection kit for the MJD genetic test.

The paperwork included indicated that I could just take it to a local Quest Diagnostics and they would do the blood draw and send the samples off. I made an appointment for the next morning, and did just that. That done, now we just wait for the results. Ideally, I’ll get a copy of the results (I’ve formally requested one, and they should comply, since that’s part of the HIPPA guidelines) and not even have to meet with the Neurologists at the local large-institution university hospital which shall remain nameless. About the very last thing I want to do is deal with those people again. Yes, that experience has continued to annoy me.

And on that point, on one of my recent morning walks (I walk ~3 miles most mornings), I found myself walking with a couple of neighbors for part of the time. They were chatting about healthcare for another neighbor who was recently injured, and the conversation turned to the local large-institution university hospital which shall remain nameless. I mentioned that I’d recently had to deal with the Neurology Clinic there, and they both exclaimed words to this effect: “Oh, Jim, why the hell did you do that to yourself?!?!”

Yeah, the local large-institution university hospital which shall remain nameless has a bit of an image/reputation problem with the locals.

* * *

Late last week I also received my state Medical Marijuana card. I decided to apply for it, as part of my decision to be more active in managing my symptoms, whether they’re due to MJD or something else. Approval was all but certain, since on the ‘chronic pain’ criteria alone I qualified, having been on mild opioids for 10+ years. As I mentioned in one of my early posts about MJD, I’d noticed a persistent uptick in my use of my Rx pain meds (rather than just the occasional up and down variation I see over the months), particularly to aid in sleeping. Symptoms like Restless Leg/Arm Syndrome tend to disrupt my sleep in the early morning hours, contributing to spiraling problems associated with lack of sleep.

So I wanted something to help me sleep, without increasing my use of opioids or getting into a cycle of taking additional Rx meds. Many of my friends who deal with chronic pain has found MMJ (Medical MariJuana) to be efficacious in dealing with sleep problems, so I figured it was worth a try.

Let me tell you, there’s nothing like going to a medical cannabis dispensary for the first time to make one feel *REALLY* old and out-of-touch. Seriously, I gave the budtender a nice tip not only for his assistance, but also for not calling me “Gramps”.

The whole experience was a little overwhelming, even though I had done my research and spent a fair amount of time exploring products on the dispensary’s website. It’s clear that this is still an immature industry, figuring out how to do branding/marketing, communicating with different clienteles, tapping into demographic groups who are not already savvy about cannabis use.

But I was able (with the help of the budtender) to select some different products to try. One of the problems that the industry has (at least in terms of medical use) is that the effects of cannabis are so varied, and standards so inconsistent, that pretty much the universal advice to new users is “just try a bunch of different things at small doses to figure out what works for you”.

So that’s what I’m doing at present. So far, it looks promising.

* * *

Not all the tests we face in life are big. Or obvious. Or dramatic.

Sometimes they’re just a simple challenge: how to deal with this small problem. How to help someone. How to get through the day, or night.

With luck, in another couple of weeks I’ll have more information about my MJD status, and know whether and to what degree I have the disease. I was always very good at taking tests in school, and those I’ve faced in my life since I like to think I’ve passed reasonably well.

Waiting is hard. But it is just one more test to manage, piece by piece, day by day.

Jim Downey