Friday, August 30, 2019

Band Review: Mike Smith

Mike Smith is a musician and producer based in Nashville.

While he lists multiple genres and influences, the vibe I hear most is the music that was widely popular in the 70s - like the Doobie Brothers - with added funk, or at least added energy. I think that can be heard on songs like "Little Bit of Us" and "You're My Kind of Beautiful", but there is also some Leo Sayer-style crooning on "Pieces of My Soul".

Smith's producing work seems to include a lot more rap, which may have led to his role on competitive reality show One Shot.

https://www.facebook.com/mikesmithproducer/

https://www.youtube.com/user/michaelasmith72

https://twitter.com/MikeSmithInc

Thursday, August 29, 2019

Album Review: Mixed Reality by Gin Blossoms

I have started blogging regularly again, but I still don't have the time that I would like, especially for music listening. My temporary solutions is that instead of reviewing two bands per week, for a while it will be one band and the other review will be new (that term used somewhat loosely) music from previously reviewed bands.

Mixed Reality by Gin Blossoms (2018) is the perfect starting point for three reasons.
  1. I love them.
  2. They were part of that exciting round of getting to see bands I had given up on seeing.
  3. Discovering No Chocolate Cake was part of my realizing that new music hadn't stopped with the end of MTV. I just needed to find new ways of finding it.
I don't want to dwell too much on the past, but especially No Chocolate Cake's first track - "Don't Change For Me" - that intro went straight into me and the lyrics raised my spirits. That is why it is a good idea to check back in periodically with the bands you love. Even if your particular flavor of music geekdom (hypothetically) involves tracking down new bands and old bands and constantly pushing away from the familiar, you need to check back in with the ones already deep in your heart. This is both to support them and to feed your soul.

On to Mixed Reality.

There is a nice mix. The aching beauty of "Wonder" is quickly followed by the dynamite intro to "Shadow". My vote for favorite is split between "Angels Fly" - possibly the most interesting musically - and "Still Some Room in Heaven", which has that weary optimism that the Gin Blossoms do so well.

(The inclusion of "The Devil's Daughter" does make it impossible to construe any certain theological bent from the album.)

"Forever Is This Night" totally sounds like the Gin Blossoms. That could be disappointing for anyone wanting a reinvention, but I find it comforting. I remember finding No Chocolate Cake at a time when my life was very hard, and writing about that and wondering if maybe there would be another release in 2014 and how my life would be falling apart then. I could have found the album earlier for that, and it remains true now.

However, one of my favorite bands is still out there. Still touring. Still recording. Still good.

That is very comforting.

https://www.ginblossoms.net/

https://www.facebook.com/ginblossomsaz/

https://www.youtube.com/channel/UCa_Ew__9kTlNeHXrzScH4vQ

https://twitter.com/ginblossoms


Previous Gin Blossoms posts:

https://sporkful.blogspot.com/2013/01/concert-review-gin-blossoms.html

https://sporkful.blogspot.com/2013/01/the-gin-blossoms-and-i.html

https://sporkful.blogspot.com/2014/01/creating-set-list.html

Wednesday, August 28, 2019

Choosing to engage

I hadn't planned on bringing up the Nazi-leaning doting grandmother in this post, but I kept remembering her, and I guess it does relate.

In this case, I did not choose to unfriend her. I replied to one post of hers, and without another word she unfriended me and all of my relatives, include the conservative one who would probably agree with her.

In this case, when I got the friend request I suspected she would be terrible, but I love a lot of her extended family, so I tried it, and she immediately started replying to my posts with defenses of Trump. I did contradict her, continuously but respectfully. Then I saw a post of hers.

It did not exactly praise Trump - it admitted he was gross in a lot of ways - but it drew an analogy that if you are infested you want the guy who will get rid of the infestation, regardless of his personal qualities. It had a lot of stupidity and racism in it, but also, when your analogies are about vermin and extermination, that is Nazi talk, and that's what I told her, actually pretty gently.

Her reaction probably indicates that it didn't help, but if I stand by it because if I am becoming an accidental Nazi, I want to know! If you see me leaning toward fascism or eugenics, you tell me!

And I have in the past gotten warnings about my growing liberalism, and that's cool. I know, actually, but if you are concerned we can talk about that respectfully. Maybe you will still disagree with me, but you will feel better about my motivations or my thought processes. That can be caring.

But then, if you do warn kindly, and they continue to appall you, maybe you need to disconnect.

With the guy I blocked, it was partly to prevent me from being tempted to try again. I had answers for everything he said, but giving them wasn't doing anything.

It was also largely to shoo away his followers with their false equivalencies and drug references.

Ultimately, that is once again a way of avoiding stress, but one where I still have concerns. If I never saw the thoughts of someone who disagreed with me, that would take away a lot of stress. It would also give me a false picture of the world. It would make it very easy for me to start believing very twisted things without having any push back. That would not be good.

The issue I feel emotionally is that I have a strong tendency toward loving other people, and am pretty good about liking people in general. I feel bad when that doesn't work out.

The issue I worry about intellectually is that echo chambers are dangerous. If I cut off all of the people I think are wrong, it increases my isolation and reinforces theirs.

These are not good things.

Keeping contact is not necessarily good either. In the past few years there have been more times when I have paused before retweeting someone or saying things about where I live in the fear that it would expose someone vulnerable to abuse. In addition, seeing people who should know better saying really messed up things makes it really easy for me to just start hating life - mine and everybody else's - and that isn't good.

I don't have any easy answers, but I think it is important to make conscious choices about what we do and how we do it.

I remember a few years ago several school friends getting onto Facebook for the first time, being overwhelmed by all the requests, and backing off. They would often come back, but it was easy to be overwhelmed and not easy to know how to handle it. I often gave advice, and as much as it frequently focused on uses of blocking and muting, it was really more about choosing: what do you want from Facebook? Here are some options.

Personally, I can be a stressful person to follow. I post a lot of news about racism, sexism, and corruption. I think it's important, but I also know it can make me a downer. It can also make you better-informed, but that can be stressful. As strongly as I believe that we have responsibilities to each other, we also each have a responsibility to self.

I read once that the most informed people were those who watched Sunday morning news shows. My news intake correlated to the second-best informed group of people. I tried moving groups, but I found that watching certain politicians lie made my blood boil worse than reading about it. The extra edge in information was not worth the anger. (I get plenty angry as is.)

To helps us think on the topic, I just saw this today: https://www.sciencedaily.com/releases/2019/08/190827125559.htm

I find the emphasis odd on how the stress of the addiction causes the person to become more addicted, because I thought that was pretty normal, but yes, because social media has different ways of being engaged (chatting, scanning, posting), you can move on to a different part of it when perhaps you would be better off doing something else entirely.

All of which is to say, decide what works for you. There is a "hit" that comes with being on, but is it a good hit? Do you need to call friends instead of seeing them online? Do you need to mute people? Did you know Facebook will allow you to take a 30-day break from someone if you are not sure if you would be better off without them? There are a lot of options.

We can find the best match for us, but we will not automatically stumble onto that. Going by what's automatic means we will follow the algorithms that encourage the activity the social media companies have decided is best for them. You are worth more than that.

Related posts:

https://preparedspork.blogspot.com/2018/10/using-social-media.html

Tuesday, August 27, 2019

Deleting people

Picking up where we left off, even though I am trying to focus on staying connected to people, I ended two connections last week. I unfriended one person and I blocked another.

I don't take that lightly. I know people who go on unfollow/unfriend sprees, and I have never felt a need for that. However, if their reason for doing so is that they have realized that too many updates from people they don't care about makes them miss updates from the people that they do care about, that would make a lot of sense, except that I am not comfortable blithely deciding that I don't care about a bunch of people.

Looking back, I think something helped with the one unfriend that I didn't realize at first.

The engagement started with a status update she had about needing to round up all of the mentally ill and drug addicts and get them off the streets.

I initially assumed it was related to Trump's recent interest in locking up mentally ill people as a way of ending mass shootings. Even if that were not blatantly cruel, it wouldn't work for that problem; most of the shooters aren't mentally ill.

She said it had nothing to do with Trump, so that was probably just a big coincidence. Maybe her real concern was ending homelessness, but not by fixing economic inequality or housing shortages.

There are reasons it is not an effective plan for that either, but the blatant cruelty was what really bothered me. I mean, someone who thinks that rounding up all mentally ill and addicted people will get them treated and happier and healthier, they are wrong, but at least their heart is in a decent place. I could not feel that way about this poster, especially seeing how she was responding to someone who uses weed for PTSD.

I supported his replies, but we didn't really get anywhere. Here's the funny part; that guy was one of the two people who was really abusive to me about Bernie Sanders, and unfriended me then. Obviously he had only unfriended me and not blocked me.

That's all fine; we were not particularly close and I didn't really have hard feelings over it. I was more concerned that the person I regularly socialized with was so readily abusive to me. I did end up unfriending her not long after the second time she tore into me, and later I ended up being really glad that I had already done so. That was the thing that helped.

In that case, this one friend was an anti-vaxxer. She would not use that term; she just doesn't believe that parents should have to abide by the science-backed school schedule or have to get all of the vaccines. Also it is not about autism or mercury or any of the other well-debunked things. It was discussions about vaccines that made me less surprised when she raged at me about Sanders. There had been some other indications of judginess, hypocrisy, and self-absorption, but that was the big one.

Anyway, back when new measles cases were being discovered every day, I wondered if she had changed her stance at all. Instead she had added a profile sticker about vaccine choice.

I felt so much more relaxed not being her friend.

That didn't make her philosophy less damaging to the community. Us no longer being friends did not reduce her capacity for harm to others, but it did eliminate the amount of stress that she caused me. I don't need any more stress.

So this other person wanting to lock up people... that is a harmful attitude. It was not the first time she had posted something like that. I bet she is anti-immigrant too. However, based on how that conversation went, I am not going to influence her. She is also not going to influence me. We could potentially really annoy each other, but does that help anyone?

In this case it was easy for me to decide to unfriend her because we were not really friends. We went to the same high school, but when I first saw the friend request I initially thought she was from my mission because I don't remember her at all.

That doesn't have to be a deal-breaker; there are people I don't remember or barely remember from then that I really like now. I don't remember her, and I am not finding her likable, and that made it almost easy to decide to say goodbye. Almost.

There was less indifference with the person I blocked, so that will be another story, and another look at consciously and ethically curating your social media interactions.

Monday, August 26, 2019

Modifying social media

You know how every change to Facebook has made it worse? That recently happened with Twitter.

I guess I should specify what I mean by "worse". Obviously the platforms have their own opinion.

I use social media to keep track of people I care about and am interested in. My favorite defunct Facebook feature was a Friends feed where I could scroll down and see the most recent post from every friend. That was great. It's been gone for years.

The change on Twitter seemed like an ordinary feed adjustment, but it limits how many tweets you see and makes scrolling much more difficult, where you are likely to lose what you want to see. Also, most of what you do see is promoted ads, because those are much bigger and they take up most of the screen.

In addition, Twitter has started putting tweets in my feed from people followed by people I follow. Retweets are one thing, and I was irritated when I saw tweets there that had merely been liked by people I follow, but just because a few people I follow follow this person you think I care about their tweets that my tweeps have not even engaged with? I do not.

I do care that it does not load new tweets at the same rate, seriously diluting it's real-time flow. I get that adding tweets I did not ask for is a way of trying to get me to engage more, but ironically it means that I see the content that I want to see less.

I get that the platform providers want to make money, and ads are a way of doing that. Despite all the panicked rumors of Facebook starting to charge, that has never happened, and it wouldn't even make sense for it to happen. They make too much money already from selling ads and providing data. Sure, greed means they will always want more, but they would lose more in their ability to sell us than they would gain from charging us.

This is a separate question from whether I want to support the various social media companies at all. I have concerns about it, but I don't have any good alternatives so I continue to use them even knowing that these are not good people and that they tend to support more white supremacy and misogyny and harassment not as a bug, but as a feature.

No, this is about - since I remain - how do I make it serve my purposes?

Some of that is personal adjustment. I try and make more of a point of noticing who posted the things that interest me. That way if I lose them on the scroll I can find my way back to them. I also try and pay attention to whom I am seeing and who has been missing. Individual look-ups may be the key.

I am also thinking about checking Instagram more regularly. The first time I tried it, I did see things from people I don't normally see posts from. The second time I checked, it looked like it was all the same content, but I think some of it was actually new content that looked a lot like the old content. I haven't quite decided if Instagram is helpful or not.

The other thing, though, is I am really pushing back on the monetization.

On Facebook I have stopped liking suggested pages from friends. Yes, your business is a part of your life, but it's not the same. I have unliked a few previously liked pages, and may do more but here's a fun fact: I have over 400 liked pages, with almost no effort. It will take a while to get rid of all of those, and I am not sure how much it will help. Scrolling does still mostly work on Facebook, so I am trying to scroll down more and engage more with actual people.

On Twitter I am muting every promoted tweet. I am also not sure how much this helps. I clearly haven't muted enough to keep new ones from coming up. I occasionally mute people they seem to want me to follow, but that is not the person's fault so I focus more on promoted tweets.

I can't even say that Twitter doesn't value my time; they do, but not in the way I value it. They provide a service that has been very enriching, and they seem to be doing everything they can to devalue it for me. We'll see how that goes.

My point for now is that what I value is people. Ironically, in the last week I cast off two. What was I thinking?

More on that next time.

Friday, August 23, 2019

Band Review: All The Beautiful Skies

All The Beautiful Skies is a collaboration between singer Suzie Potts and guitarist Craig Gibson, who was previously reviewed as part of Manchester indie band Puppet Rebellion:

http://sporkful.blogspot.com/2013/07/band-review-puppet-rebellion.html

Back then it was looking to me like Manchester was the British equivalent of New Jersey, producing strong and meaningful rock. This is a different sound.

There is a softer sound to All The Beautiful Skies. It can be piercing and haunting, a bit reminiscent of Enya at times. The beats still know their rock roots, but the emotional impact is different. This can especially be felt on "Save Your Towns", a song that washes over you and then strikes you at the core.

There are not currently many songs available online, but the recordings are recent so there may be more coming.

https://www.allthebeautifulskies.com/

https://www.facebook.com/All-The-Beautiful-Skies-111201296254543/

https://www.youtube.com/channel/UC0XokeGOy6mfzfrMct3gSQg

https://soundcloud.com/allthebeautifulskies

https://twitter.com/atbskies

Thursday, August 22, 2019

Band Review: Badger Cats

On Twitter I have been befriended by Rigby Cats and Badger Cats. When they sing together they are Badger Cats, and they are pretty fun.

It is not a highly professional system; currently mainly covers and possibly recorded somewhat spontaneously. I think better recording equipment would make a difference. A message from Rigby Cats referring to more songwriting and a web site indicates that could change.

For now, if you are into cats, homeless advocacy, and covers from a surprising variety of musicians, you may want to check them out.

https://twitter.com/BadgerCats

https://twitter.com/RigbyCats

https://www.youtube.com/channel/UCZbPkp5ibRVob9E4rBsHMJA/v

Wednesday, August 21, 2019

Making it up as I go along

Last night I wrote a whole post on how dementia care giving is like improv, and then it didn't feel right and I deleted it and started over.

Tonight I attended a class on caregiver stress, and the instructor talked about how it is like improv too. Perhaps I was just getting ahead of myself.

Possibly the most important thing said was a reminder that the patient can't change, so you have to. The sense in which that was said was true.

In a different sense, they change all the time. It's been quite a while now that our mother has not believed this is her house, or that there is not another set of her youngest, and that any of the different cats that she sees here belongs to her, though she does believe she has a cat and she worries about it. However, just today she asked about the dog, and said Adele wasn't her dog. One of the few assurances we have been able to give her has been showing her the dog so she can see that the dog is fine. Twice today she got confused about that. We were able to talk her down, but that will probably only get harder.

We will have to adjust. That will involve coming up with multiple responses, and figuring out which one is best at any given time. Sometimes you say something that has worked before, and then it just doesn't. That's when you need to change; saying the same thing louder will not force it to work.

A lot of the information on dementia was familiar; I have been at this for a while and I study hard.

It was also really about the stress the caregiver has, not the dementia itself.

They did an early scene (scripted, not improvised), where after having to repeat the same information multiple times the caregiver yelled at her mother, and the anger felt real. It was a little scary.

(I am relatively good at repeating the same thing multiple times.)

What was more applicable was the part about building teams of support - which I have not done - and the much higher percentage of hospitalizations for caregivers who were not in support groups.

Fun story: I know of a support group that meets nearby, but they meet at 10AM on Wednesdays. What caregiver has weekday mornings free? I can only assume it's to keep the attendance manageable. Or a sick joke.

And I don't want to end up in the hospital.

Recently I have felt illness coming on and been able to head it off, but then I got this image of me after all of this is over just throwing up everything in my body and being hospitalized with dehydration and wildly out of control blood sugar.

Delving into that image, it felt like it could signal that if I just kept stuffing all emotions - grief, fear, anger, stress, and everything else - down to keep myself functioning, then there could be a terrible recoil when taking care of my mother ends.

I can't rule out a physical somatic response, but that could all be metaphorical. I could just end up a raging crying mess too. There are a lot of possibilities for what reactions can happen, and what will happen between now and then. Don't take anything too literally, is what I am saying here.

My conclusion was that I needed to make sure that I was letting off steam and getting things out on a regular basis; that build up would not be healthy, regardless. Shortly after that I blew up at my sisters, which was totally not how I saw that going, and not a permanent solution anyway.

What I am saying here is that there are things to work on, and I continue to study.

I don't know if I will be writing about that next week, but I am thinking of it.

Preparing for Alzheimer's

Maybe this should have gone on the Provident Living blog.

I know I have blogged before about how all of my aunts watched The Bold and the Beautiful, but I don't think I mentioned that they and my uncles also all did the crossword every day. It took Mom's illness for me to realize that was probably at least partially a response to seeing their own mother succumb to dementia. That was their way of fighting it.

And one of them got it anyway. I don't know. Maybe two out of six siblings isn't bad.

My mother never did crosswords. She had never really enjoyed reading or puzzles or anything like that. Her thing was being a wife and mother. That involved a lot of cleaning that she was great at. When she started working it was at housekeeping and janitorial, so a natural extension of what was familiar.

I wish sometimes that it had been different. Back in the early 90s there had been some discussion about her training to become a CNA, after a friend did it. I wonder if that would have changed things or given her more time. If she had started doing the crossword, would that have helped? What if she had started reading romance novels like some of my friends' mothers? I'm not even saying the smutty ones. It's still reading.

Probably some changes wouldn't have hurt. There is a lot of information out there on keeping your brain young and avoiding brain fog. With her having it, though, there are some things that I especially wish.

I wish she'd had some kind of tactile hobby, like crocheting or drawing or playing the piano. I wish there was something with a lot of muscle memory involved that could keep her busy and bring her some satisfaction now. The cleaning was the biggest thing for a while, but a woman who could clean two houses plus her own every day and then offices at night, well one house isn't that much of a challenge for her, even before she started losing some of her abilities there. I wish we'd had something else.

I wish we had taken better care of her joints. For one, when she was cleaning houses by day and buildings by night, it beat up her body a lot. (Though the friend who became a CNA really messed up her back while attempting to help one patient, so there are always risks.) In addition, while Mom was resisting the surgery she held her knees stiffly a lot, and the knee replacement fixed a lot of the pain, but not the stiffness. Of course, we never could have afforded the surgery before she was on Medicare, but they had gotten really bad a few years before. Greater mobility could help with greater activity, and that is valuable on many levels.

There's one other thing that I know we could never have pulled off, but it would have helped.

I read a story about a couple who nicknamed the dementia when the husband started getting it but was still aware. It became a joke for them, and a way of being lighthearted about it.

That's why I don't think we could have done it; Mom hated her diagnosis too much to find any humor. However, I think there will be times for that couple when it is not just that he forgets something, but he is starting to believe something not true, and the reference to "Ollie" will help him believe her. Eventually that will stop helping too, but I would take any extra help we could get.

Monday, August 19, 2019

Music Therapy

After writing about diabetes for a week, I wanted to spend a week on dementia. It is getting a little late in the day.

I had been feeling pretty good about having had two weeks of consistent blogging, with posts on all three blogs on the appropriate days and new bands reviewed and all of that. I would like to keep it up, but I don't know if I can. Maybe this week will explain more why.

However, today I want to write about one thing that is going pretty well, only possibly not. That kind of ambiguity comes up all the time with dementia.

My mother has always enjoyed music, and songs she has strong relationships with elicit more of a response. I checked the Three Tenors concert DVD out from the library, thinking she would like it. She loved it.

Beyond that, she especially loved certain parts of it, and I started realizing that the music that resonates most for her are songs that her father sang and loved. He sang all the time, possibly with more spirit than skill, so family resemblances are a thing.

He loved opera, especially Verdi, but also other classic Italian songs and songs that were popular when my mother was young. I have played some opera that is pretty but wasn't so much his. She likes it, but the songs that he liked touch a certain chord. She connects to it in a special way.

That's good, right? Probably.

She often gets teary-eyed listening to it. That could be a concern, but I think they are happy tears. Also, it connects her more to Italy.

It has been a while now that she has not believed this is home, but she used to think her home was somewhere nearer. It is now more frequent that she is remembering the home she grew up in.

That could actually be an improvement. When she had a place in mind that didn't exist, we could never take her there; her childhood home still exists, and is inhabited by her nephew and his wife. It looks different now, and it would probably only feel like home for a minute, and it would take a lot to get there, but it exists. Mainly it matters now that she is remembering home is Italy because she frets over having ID, saying that they will ask her for it when she goes home. (The news may not help with that either.)

It would probably be better if I could make her feel more connected to this house and these people, but I still think it helps that there is some connection.

Therefore, I have printed out lyrics and we have started singing, as well as listening. We have mainly been working on "O Sole Mio". She often wakes up with it in her head, not knowing why, and then saying she doesn't know the words when I say we are going to sing it, but she is relying on the lyric sheet less.

Today I just added "Come Prima". I told her when we know ten songs we will throw a concert. She laughed, but it was something she was happy about, and then I knew what to do with her next, and those moments are little miracles.

Then I had to make dinner and she got very restless. I need to leave more little tasks available, I guess. It's hard to plan it all out.

Recently we had a really good music session, I thought, but immediately after wrapping up she said she should be getting home. That felt like a failure, but it's not as simple as that. It never is.

For now I believe it is good for her, so we will keep doing it. Dementia care giving is a lot like improv, except that you are the only one committed to saying "yes". So when there is a definite "yes", you take it.

Friday, August 16, 2019

Band Review: New Chums

New Chums is a Phoenix-based indie band.

Their newest release, this year's "I Won't Let You Go", has kind of classic emo vibe, or I might just be primed to think that based on some of my current listening.

From the 2017 EP See It for Myself, I also notice some similarities to Neon Trees, based largely on the vocal delivery of singer and guitar player Seth Boyack.

That may be most audible on my favorite track, "The Right Thing", but it is the instruments that really stand out. Guitars by turns grind and then lightly transport, allowing the music and emotion to carry you away.

New Chums also contains Ben Hedlund on drums, Cassandra Clark on bass, and Matt Lloyd on guitar. Oddly, they have a song called "Disposable Music", but this is worth hanging on to for a  while.

https://www.facebook.com/newchumsband/

https://www.instagram.com/newchums/

https://www.youtube.com/channel/UC6lRmzuFi7-hcccqeq7sIMg

https://twitter.com/newchumsband

Thursday, August 15, 2019

Band Review: The Tattered Saints

The Tattered Saints are a rock band from Tampa Bay, Florida that takes more influences from New Jersey, a la Bruce Springsteen and the Gaslight Anthem. There is a gritty vibe, building off of three guitars and throaty vocals.

There is not a lot out right now. The We Started Young EP (available on Spotify) has three songs, including the title track. It appears that other music has been made, and you can hear two of the songs via their Youtube videos, but currently the concentration seems to be on what is new and what is coming next.

I guess that displays some optimism, despite the grittiness.

It looks like they will be playing with Dave Hause and the Mermaid in Tampa on September 5th, and that feels like a good match.

https://www.thetatteredsaints.com/

https://www.facebook.com/TatteredSaints/

https://www.youtube.com/channel/UC_IsA4un-3CniNvfYIEb0vQ

https://twitter.com/TatteredSaints

Wednesday, August 14, 2019

Affording insulin... and syringes!

This may be the most important post I ever write: ReliOn insulin at Wal-Mart costs $25 per vial.

No matter how many times I see conversations about insulin prices and I mention that, no one ever seems to know. It is a life-saving thing.

Better yet, it is not prescription. I don't know why that is, and I don't recommend random experimentation, but that does mean that if you have not seen a doctor for over a year and do not have a current prescription, you can still get it.

In my case, as I was losing my health insurance and worrying, my endocrinologist suggested it. She had been giving me free samples of Lantus and Humilog to help out, but availability was always going to be a concern. Yes, when money is tight coming up with $50 a month might be hard, but it is way easier than coming up with $1000 or more.

That was our last visit, so she suggested some doses. There are no pens, but you can mix the N and the R (the cloudy and the clear), and she offered to show me that. I thought it sounded overly complicated so I declined, but then I looked it up on the internet and it was in fact very easy. I do it without thinking about it now.

It is better with a doctor's care. Once I was insured again my new primary care physician had me work with a pharmacist to adjust the dosing, and that has helped. Guessing on your own is probably not a great idea, but it is still so much cheaper.

The N (also sometimes referenced as NPH) is not a direct substitute for Lantus. It is more of a medium-acting than a long-acting. I take it twice a day. The R is fast-acting, though you might not take it with meals like Humilog and Novolog. I was initially taking it twice a day, but we added a midday dose and that has been good. Experimenting could be dangerous, but so is rationing the regular insulin you can't afford.

There are no pens; it is all vials and syringes. That is another expense.

Generally syringes come in boxes of 100 with bags of 10 inside. I use three a day, so need about one box a month. If the pharmacist doesn't know you, it is common to be reminded that they are not sold individually, and once I was even asked for ID, because you could be an IV drug user. 

Before transferring to the Wal-Mart pharmacy, I was at Fred Meyer. If they had Kroger syringes a box was about $15, but they usually only had BD for around $30 (which actually were nicer, but not twice the price nicer). Of course pen needles were always around $50 a box after they took down all the eBay auctions, so even the $30 didn't seem terrible, but Wal-Mart has them for around $13. It made sense to just get the syringes with my prescriptions now, plus they recognize me and aren't eyeing me for signs of drug abuse.

I mention this because I was out of syringes one night when none of my prescriptions were due. The Wal-Mart isn't close to home, so I was just going to run in to Rite-Aid. $50! No other options.

I walked out, and got a $30 pack at Walgreens. I really try and plan ahead better now, only getting them at Wal-Mart or Costco. I know $15 isn't a lot of money for many people, but it is for me. It would also be very easy to not even realize the price range out there.

I have written before about avoiding shopping at Wal-Mart for a long time because of their business practices, and giving in because it means I get to live. My current insurance would let me go back to Lantus and Humilog, but in thinking about that I felt so much panic; what if I lose insurance again? I want to stay with something I can afford. I can easily avoid Chik-Fil-A and Home Depot, and there will probably be some pain in not getting New Balance if I can ever afford new shoes again but I will do it, but at this time my efforts require me staying alive. That means insulin at Wal-Mart.

Do what you need to do to stay alive too.

Recently I saw tweets about mortality coming up that were all related but with key differences. One was about how a lot of young people start dying after 26 because they lose their parents' insurance coverage, and another was about approaching 40 and all of the conditions that you have had to put off treating becoming issues, and one was about elderly people no longer being able to afford the care they need when they are on fixed incomes.

That last one may be the worst, because time was when if you could make it to 65 and Medicare you would have the best health care of your life, and probably be good into your 80s. We talk about average lifespans, but within that set there are clusters and danger areas. We just keep adding minefields.

I also recently saw a very eugenics-heavy tweet that called out diabetes specifically. Fine, I am not reproducing anyway, clearly, but that kind of hostility will pop up in other areas. I have health coverage for now.

Sometimes the most radical thing you can do is live. Do what you can.

Edited to add: I should have mentioned that ReliOn insulin is not meant for Type 1 diabetes. Obviously I am more familiar with Type 2 issues, and I don't know of any better options for Type 1. Better health care coverage and better price controls for life saving medications would be huge, and help everyone. 

Tuesday, August 13, 2019

I protest

I recently started taking a statin. I am not happy about this.

I would not object if I had bad cholesterol, but I don't. I never have. The philosophy behind it is that diabetes increases my risk for heart disease and a statin will lower that risk. My doctor has been trying to get me on one for two years now, and I finally gave in.

I was already aware of the heart risks that are considered to accompany diabetes, because the Jardiance commercials make such a big deal of it. I am on Jardiance. I was previously on Farxiga, which worked great for me, but my insurance plan wanted the switch. That is not the first time that plans have mandated a change from a medication on which I was doing well. Nonetheless, still doing well on Jardiance. Fine. Shouldn't that be enough protection for my heart?

I am also on a blood pressure medication, even though my blood pressure is good. In this case it is because it serves to protect organs that are put at higher risk with diabetes.

Am I just a complainer? Maybe, but there are a few frustrations going on here.

One is that I am kind of proud of all of the other health factors that are good. Yes, I am diabetic, but I have good blood pressure and cholesterol and I still have full sensitivity in my feet after having diabetes for twenty years, and I am sensitive to when my blood sugar drops or when I my immune system is getting low. You may remember a few years ago that one of my goals was to get in touch with my body, and I think it worked.

That could easily go a wrong way, with me trying to feel that I am not like other diabetics and I am somehow superior to them -- that is a surprisingly common pitfall, with other conditions too. That is not my intention.

Instead it feels more like that for the medical industry, any other efforts and accomplishments don't matter; I am still diabetic and these things happen to diabetic people no matter what you do.


Frankly, that is not the best way to encourage good health practices.

(And there is probably a lot of it where you can use "fat" and "diabetic" interchangeably, at least for perceptions.) 

I like my doctor. I have liked other doctors I have had in the past. I think they have been smart and caring and wanted the best for me.

I also know that what they can do is constrained by my insurance coverage, and I believe those insurance plans are influenced by the pharmaceutical companies, and the studies they promote. I don't know that they have my best interests at heart.

Screw that; I know they don't. Pfizer knew Enbrel could help prevent Alzheimer's and they didn't explore it or invest in it.

https://www.beingpatient.com/pfizer-coverup-enbrel-etanercept-alzheimers/

I take that personally.

And I'm fascinated by it, and the apparent link with inflammation that seems to be at the root of so much, but also, I care about people. Even if I am not personally affected by a condition or in any position to profit from it, I still want that research to happen.

Coming from a perspective of corporatism and capitalism, well, it just makes more sense to try and get more people to take the drugs you've already got.

Funny how that works.

Monday, August 12, 2019

Delusions of grandeur

Last month I needed a blood test and I had an eye appointment. Because anything that involves me leaving the house has a similar set of challenges, I arranged for care for my mother and was going to get all my medical stuff done on the same day.

It started off really well. I made an earlier bus than I needed and finished my book before checking in at the first appointment. This was important, because my eyes were going to be dilated and there was not going to be any reading after the appointment. Score!

Trimet trip planner had said the best way to get from Point A to Point B was to walk from St. Vincent's to Sunset Transit Center and grab a 48. I had never taken that path before and was a little worried about traffic (the area right around there is busy and some of the intersections are a little complicated) but I made it - still ahead of schedule - and started the last leg of my journey.

I was feeling really good about this. I'm sure some of it was the thrill of being on my own, even if it wasn't for doing fun stuff. Beyond that, it's nice to sometimes feel like I am accomplishing things and competent again; this current life phase does not give me a lot of that.

I had not gone to the Tanasbourne Providence by bus for a while, so I was not sure about the pathway there either; there has been a lot of construction and change. As I was getting across Cornell I could see that they had really improved pedestrian access and there was nothing to worry about.

Just as I got onto the sidewalk, I felt my blood sugar plunge.

This was not a tragedy. If it had fallen like that in the middle of Cornell, it could have been, but I was safely on sidewalk with guardrails. I quickly took a glucose tab, took one more immediately after, and then I went and got my blood test done. I had thought about taking the bus home too, but I called my sister and had her pick me up instead. That seemed like a better idea. I went home and had dinner and everything was back to normal, with two important tasks completed.

Obviously, one point of that story is that I shouldn't get cocky. I don't fall into low blood sugar often, but when it happens it takes away all of my illusions of strength and durability. Yes, I am sensitive to when it comes - and that is helpful - and I am prepared for it to come with keeping the glucose tabs on hand. Before that, though, there is a certain unpredictability that just grabs me and reminds me that I have a chronic illness in a way that the daily regimen of measuring and injecting doesn't. I suppose it's because those steps feel like keeping it under control, and then the drop is a reminder that control is limited.

Also, there is a way in which it is not completely unpredictable, in that when it happens I am probably in the middle of something, maybe trying to do more than usual or do it for longer. I don't want the interruption but I don't get a choice.

So there's that.

In addition, when you look further so much of that being in charge was never real anyway. Arranging care for my mother took not one but two sisters, because one was available earlier than the one who was available longer. My mobility was possible because I live in an area that values public transit. My medical appointments were possible because I live in a state that does not believe that having no income should automatically bar me from having healthcare. If not, there would have been no ophthalmologist visit and no A1C test, even though both of those things are important parts of staying on top of my chronic illness.

There are a lot of factors that go into the opportunities that are there for each of us. Of course our own efforts matter, but it's foolish to think that is all.

I am grateful for my sisters, Tri-met, and the Oregon Health Plan. None of them are perfect; they all still help me.

I'm still not grateful for diabetes or Alzheimer's, but they are still a big part of my learning and my growth. It's not even unfair, it just is.

And if my blood sugar had to drop, I'm glad that it was on the right side of the intersection. That could have been messy.

Friday, August 09, 2019

Concert Review: The B-52's

The B-52's were the headliner, and they were well-loved by the crowd that filled the venue.

They mentioned our "Keep Portland weird" motto as indicating this is a place where they fit in, and it's hard to argue. They started out as a really weird band. After "Love Shack" was a mainstream success, it was easy to see them as merely delightfully quirky, but they have never left those strange roots.

It is good to see them still rocking after so many years. The memories come. For example, I have never forgotten "Roam", but when they started "Channel Z"... I had kind of forgotten that one; it's a good song!

All of the bands made good use of the giant video screen, but in the B-52's set I really appreciated how much footage there was of deceased founding member Ricky Wilson. Most bands that have been around for a while have some painful spots, but embracing the memories is usually the healthiest option.


The nostalgia doesn't hurt the fun. One of my favorite things was that as they closed the show with their first single, "Rock Lobster", out came a giant lobster. It was a pretty good dancer, despite what must have been poor visibility in the suit.

No one would have thought about it if there were no lobster, and it still would have been a good finale, but that just took it to another level.

For some random thoughts, Kate Pierson was rocking a real Poison Ivy look. I could buy The B-52's being a DC band, comics-wise. I mean, B-52's/ New 52; it makes sense.

Kate is also the oldest B-52, which I did not see coming. We assumed it was Fred Schneider, but he is only(?) 68.

Speaking of the videos, they had an awesome dance one that combined footage of the band with every dance movie imaginable - Astaire, Garland, Swayze, Napoleon Dynamite - and there was one scene that I had initially pegged as a young Christopher Walken, but it was Fred. I don't think it means anything; it was just weird.

Therefore, perfect for this band. "Bless their hearts" is a bit of an insult in the South, but I'm not Southern so bless those Georgian weirdos!

https://www.theb52s.com/

https://www.facebook.com/theb52s/

https://www.youtube.com/channel/UCBGCbkljFbQHm_8w8HFWAKA

https://twitter.com/TheB52s

Thursday, August 08, 2019

Concert Review: Orchestral Manoeuvres in the Dark

Andy McCluskey is the most appealing dork.

Perhaps that's not quite the right word, but his down-to-earth embrace of not being a good dancer, and then continuing to dance anyway, with great looseness and energy, along with his cheeky sense of humor, makes for a good show.

Reunited with OMD co-founder Paul Humphries since 2006, they played at the Oregon Zoo Tuesday night.
They played all the old favorites - along with some newer songs - and it felt fresh and fun.

The band is currently rounded out with Martin Cooper playing additional keyboards and Stuart Kershaw on drums. Both have had previous experience with the band, and perhaps that contributes to the tightness of the sound. After all the years and lineup changes, the fidelity of performance is there.

See them if you get a chance.

http://www.omd.uk.com/

https://www.facebook.com/omdofficial/

https://www.youtube.com/user/OMDenglishelectric

https://twitter.com/officialomd

Wednesday, August 07, 2019

Concert Review: Berlin

I saw Berlin at the Oregon Zoo last night.

I have enjoyed them for a long time, even in my pre-teen days when my older sister used to play Pleasure Victim a lot.

Frankly, it started out a little rough, with some of the male vocals sounding a little too strained.

The keyboards were great, and I was thinking maybe they would do better in smaller, indoor venues for these old synth hits. Then they started playing music off of 2019 release Transcendance, and it was fantastic. I thought maybe they were just better off moving forward.

Then Terri Nunn went out into the crowd singing "Take My Breath Away". That is not new material - going back to 1986 - and in a way she was even more outdoors than before, but everything was perfect and powerful and the crowd was thrilled. (I'm not sure how security felt about it, but no riots were started.)

As well as that turned out, I feel a little bad mentioning the rough start - maybe I am being too critical - except that they turned it around so completely that it makes things even more impressive.

Good show!

http://www.berlinpage.com/

https://www.facebook.com/BerlinOfficialBand

https://www.youtube.com/user/berlinofficialband

https://twitter.com/RealTerriNunn

Tuesday, August 06, 2019

Searching for the Biblioburro

Looking for books tends to lead to more books; that has proven true over and over again.

Maria had heard about a book about the "Biblioburro", a traveling library on burro back. Searching on that word produced four results.

The one she had heard of was probably Biblioburro: A True Story from Colombia, by Jeanette Winter. It gives a basic telling of how it started, and has a note on the man who actually has the two burros, Alfa and Beto.

It was not the first one we were able to locate. That was Waiting for the Biblioburro, by Monica Brown and Jim Parra. Written from the point of view of one of the children visited by the Biblioburro, the book focuses on her desire to give back, and create her own book telling the story.

Both of those were sweet and charming stories, but there is always more to any story.

The other book was My Librarian is a Camel: How Books are Brought to Children Around the World, by Margriet Ruurs. The Biblioburro was in there - which is why it came up in search results - but also there are camels and horses and vans and wheelbarrows and all sorts of ways of making sure that books get to places where people need them and might not be able to easily get them.

That was probably the most inspiring for me. Access to books inspiring creativity is close to my heart, but seeing so much creativity based on a passionate belief in the value of access to books was amazing.

It meant even more because I had been seeing so many attacks on libraries.

They were not openly vicious attacks. The first one was clothed as an argument for greater access: instead of libraries just give every kid some portable reading device and lots of access and then you don't need physical locations!

Of course, those who argue that technology is the answer for everything are generally not paying attention to the bias built into technology (possibly intentionally). Beyond that, they are discounting the value of librarians guiding users in their choices. Finding books at the right level to increase learning instead of discouraging it has some art to it. There are so many books out there, it is easy to get lost. I am a big fan of the tactile experience of books, but I am also a fan of the human factor, and it matters.

Of course that argument was focusing only on access for students, because who cares about adults? That might relate to the next thing I started seeing, a few months later. It was a complaint about homeless people around the library, and then wondering if there was some way to get around that, like maybe instead of libraries subscription book clubs... I guess because a cost will keep out the riff raff.

It is a beautiful thing that people without homes, or maybe currently without electricity or internet access, can go and check the internet or print their resume or have their children listen to a story or any of the myriad other things libraries do, as bastions of community and democracy.

Libraries have entertained my family with music, and saved us money, and opened so much learning. I have piles of books, yes, but they would be much higher piles if I had to buy everything I wanted to read. Electronics could eliminate some of that too, but I still like the tactile.

It always baffles me at first that anyone could be against libraries, but then I remember that people are horrible.

That leads to the fourth thing.

It was not a book, but a documentary, Biblioburro: The Donkey Library.

There were Alfa and Beto, and their owner, Luis Soriano, and there he was teaching during the week, and loading up the burros and taking them around on the weekends. It started out a little slow, with him talking to the donkeys to give exposition. It quickly became gripping, though, as it became clear that this was about more than literacy.

The literacy was a real issue, and it was good to see an adult literacy class too, but much of what Luis was doing was about dealing with trauma. Many of the children had seen family members killed and lost their homes in fighting. The children were writing essays and drawing pictures of their experiences, and then he was telling them to take those sad stories and put them behind them. I did wonder whether that was the best method - can you really put those things behind you - but he was giving them a way forward in the best way he knew how, and it was good that someone was trying.

It also became clear that it was dangerous. He had burros, but there were cars, and rivers to cross that sometimes had higher water, and at least once he was threatened by hostile men. At the end of the documentary it looked like those dangers were past, with him getting a government education position, but I recently read that he had a leg amputated after an accident with one of the burros. However, it also says that he remains dedicated to his work, and I believe that. If he were the type to have been discouraged he could never have done so much.

https://en.wikipedia.org/wiki/Biblioburro

I appreciate finding a good cause and then going with it. The world needs more of that.

Monday, August 05, 2019

Watching movies

For my movie watching, I settled on ten Black directors and twenty-two films. I am about halfway through.

I have had many thoughts already, but I am saving them up. For now, the main thing has been remembering how beautiful movies can be.

One of the early films was Daughters of the Dust (directed by Julie Dash, with cinematography by Arthur Jafa). That one makes it kind of obvious; I mean, it is gratuitously beautiful. I could worry about that taking away from the story, but that's not how it works. You are carried along by the images, but then the significance of things keeps stealing in on you later.

Where I started thinking about it more was after watching Eve's Bayou (directed by Kasi Lemmons, cinematography by Amy Vincent). There is a lot of beautiful imagery, but that closing shot... it's like if there is a museum of cinematography, and a hall with blown up images (preferably on glass) of  the most beautiful shots in film history, that should be there. (And probably one image from each section of Hero, but that's another story.)

I remember once looking at a patch of sunlight on a brick wall that was so beautiful that it didn't seem real. It sent me looking up the origins of "pretty as a picture", because why should we look at something real and compare it to a reproduction?

Apparently the phrase came from a common art practice of not reproducing flaws when they were painting. The end result looked mostly like the subject, but a little bit better too.

I simultaneously understand and don't quite approve of that, but there is something else that can be done with setting things to the best advantage. Framing and contrast and lighting and all of those factors can be used, not so much for changing the subject but for changing how we see it. They can enhance how we see it.

It goes that way with the plots too. You can make true stories more exciting by adding in things that didn't happen. At least, you can try that, but will sometimes only succeed in making it obviously fake and stupid.

However, if you take something that took three conversations - because humans take a while to get on the same wavelength, and we realize things we missed and have to get back to them later - and then distill that into one conversation, that gets to the point without all the false starts and superfluity. That's something else. It's still fiction, but it's more truthful and it can be helpful. We see parts of ourselves in it. Maybe we understand not just that story better, but many other stories.

It's just a reminder for me of what art can be at its best.

And it's been too long since I've been writing.

Friday, August 02, 2019

Not a concert review

I went to a concert last night. I arrived late and left early, so I don't think I have anything to contribute about that.

I was glad for what I saw; I just wasn't in the right frame of mind. That's been a problem for a while.

It was going to be three of us going, but it ended up just being me. There are ways in which that has been better in the past, but that is not working for me as well. Going to concerts alone has been kind of a freak thing to do, which I have felt even when I enjoyed doing it. When I enjoyed it, I didn't realize how much it took. There has to be some strength or being okay with yourself or something where I am not just a mess on the verge of a breakdown.

I knew there was a chance I would not really be up for it, but when I thought about skipping it I got this sense of panic that I get when I have a chance for some respite time and feel it slipping away.

Things have been getting worse. There's really no other direction for that to go. I had not been feeling great, and I have been feeling it slowing me down. I feel it in my knees and my hips especially.

That could totally be arthritis coming on. I have that in the family genes and as a fat person I will always be assumed to be at risk of things like that and specifically for that reason, regardless of what other factors might be in play.

But the other thing is that it has been like there is this invisible weight resting on top of me; it really is more of a lack of energy and will than pain. I thought if I left the house I could get it off of me for a few hours, and spring back up a little. It worked, except then I kept starting to cry. Apparently that weight tamps down the emotions too.

So it looks like respite time should now just involve hiding places where I can have a good cry without being observed by people.

And it's fine; no one notices if you are crying at a concert. It isn't typically how I like to enjoy my rock music though.

Before this sounds too maudlin, I have one more concert Tuesday (summer, right?) that has different circumstances, and that I am optimistic about. Also, last week we (sisters, mother, and I) went to the Carousel Museum in Albany, and even though I was not off duty, it was still a break. So, it's not always like this, but it's like this a lot. The cumulative effect is taking a toll.

In the midst of my death and grief reading, I recently finished Sherwin B. Nuland's How We Die: Reflections on Life's Final Chapter. I am sure I will write more about the whole section when I have finished it, but there is one quote from the chapter on Alzheimer's about the families that I copied into my journal, and keep pondering:

The cost, of course, is considerable. In terms of emotional damage, of neglect of personal goals and responsibilities, of disturbed relationships, and obviously of financial resources, the toll is unbearably high. Few tragedies are more expensive.
I don't have an answer for that.  I have ideas for things that would help society in general, and given the percentage of families that experience Alzheimer's that is something to think about, but we are not there now. So with my actual resources, how do I deal with that blight right now?

I wish I knew.




Thursday, August 01, 2019

Mourning Kalief Browder

When choosing historical figures, some are more obvious than others. Some people had a large effect on those around them, or figured prominently in news. Others may have never been headliners, but in learning about their lives we learn other things.

Maybe sometimes it is more that history happens to them.

One of the movies I watched was 13th. I know it had a bigger impact on a lot of people, shocking them. I was already pretty familiar with the subject matter, so there was no astonishment, but there was video footage of Kalief Browder, and it got to me. I guess it was seeing him alive.

Browder was arrested for the theft of a backpack, based on a witness identification, though there were some signs that the witness was unreliable. He always maintained his innocence.

Because of that, he would not take a guilty plea, but part of the brokenness of the legal system is that without ever being tried he spent three years in jail until the case was dropped. There was a lot of abuse there, including the use of solitary confinement.

Browder killed himself two years after being released.

https://www.newyorker.com/news/news-desk/kalief-browder-1993-2015

He had been open about it being a struggle. He attempted to move forward, getting his GED and enrolling in college. He certainly could have already had some predisposition for depression. Still, it's pretty hard to avoid the obvious: his imprisonment caused great emotional and psychological pain, and it should never have happened. Even if there had been a stronger case that he was the backpack thief, it cannot justify that amount of pre-trial detention. It is horrifying on every level.

There is a natural resistance to claiming guilt when you are not guilty, but a lot of people do just to avoid this trap. Browder did not - maybe he would have been better off if he had - but there is no way that this can be right.

And he will have an impact. There are people who are aware of the systemic injustice now that weren't before. He is remembered. He is a part of history, and to some extent in taking a principled stand and refusing to plead guilty, and speaking about his ordeal after, there was even some choice to be a part of history.

It just should never have been like this.