"There is no solution: seek it lovingly."
This was a favorite saying of my dad. When I was a kid, I assumed it was his own. I learned later that it's one of those things that's floating around, but I've been unable to track down the actual source. Many Internet search results attribute it to Socrates (but never citing where), or to a Zen proverb, or to a Jewish philosopher.
To me, the quote addresses problems and questions that can't really be solved or answered, but it's still worthwhile to try. There's no such thing as a perfect golf game, but fans of the game get a lot of pleasure (and sometimes frustration) but continuing to work on it.
I got annoyed this afternoon by a debate on a sports radio program about what basketball player is the greatest of all time. This is the kind of discussion that can be a lot of fun -- if the participants understand that there's no final answer: once passions get inflamed, all there results is a great deal of yelling in the service of nothing.
For most of us, perhaps all of us, diabetes is a problem that will never be completely solved, but we have to keep seeking it. The reason there's no solution is that too many of the variables that affect our blood sugars are either unknowable, moving targets, or both. But, over time, we can try to get better at working with those variables we can affect.
There is no diabetes perfection. Seek it lovingly.
I've had a largely a largely adversarial relationship with sleep my whole life. I have a lot of trouble getting a good night's sleep. These days it's partly insomnia, partly the rumbly in my tumbly, and partly an unwillingness to shut off the quiet evenings that are the best part of many of my days.
But short nights impose a steep penalty. They're hard on my health management, because I want to replace the sleep with caffeine and carbs. They're hard on my mental health, because they make mood control that much harder. They make me less effective and more mistake-prone at work, which feeds into further problems controlling my mood.
I have to become willing to trade my evenings for my health. Going to bed at a decent time won't solve the problem, but it will sure help.
This post comes from two things coming together.
- My friend Kerri (not this Kerri, but this Kerri) mentioned at the beginning of May that this is Asthma Awareness Month. Since Kerri is both a friend and an asthma patent advocate, and because her grandmother has a Roomba named Bob, I've been thinking I ought to raise my own awareness about asthma.
- I've been thinking about diabetes awareness. Just what are we trying to accomplish?
Whatever knowledge we might want people to have, it can't be much. (The people in our lives, of course, need more than that. Especially Aunt Gertrude, who has had the "I can TOO eat that" speech FORTY-SEVEN TIMES.)
So, I thought I'd do an exercise tonight. I decided that I would begin this post, and lay out my current level of awareness, then go see how much I can raise it in half an hour.
So, before I go do my reading, here's what I know (or think I know) about asthma:
- Asthma is a condition affecting an individual's ability to breathe.
- I don't really know what causes it, but it's my general impression that it may be congenital in an individual, or it may come about as the result of something else. (MOSTLY WRONG – see below.)
- I think there are a variety of treatment regimens to treat the ongoing symptoms.
- The life of a person with asthma is punctuated by attacks/episodes during which breathing becomes difficult or impossible. Treatment may be through the individual's use of medication delivered by a 'rescue inhaler', or it may require hospitalization. The frequency of these attacks is not only individual but will vary over time for an individual.
- Attacks may be triggered by any number of things, or a combination. Some of those triggers would affect most/all people with asthma, while others are individual. The person with asthma may or may not know what triggered a particular attack.
OK. I'm now going to do a little awareness self-raising.
I'm back now.
I'm not going to try to share everything I read with you. (I visited asthma.com [produced by pharmaceutical company GlaxoSmithKline], the Centers for Disease Control, and WebMD.) Here are some highlights:
- I didn't find anything to contradict most of what I wrote above. However, according to the Centers for Disease Control, the cause of asthma is unknown in most cases.
- There is no cure. I guess I assumed that, although I didn't articulate it above.
- An attack is caused by the immune system's reaction to a trigger, causing inflammation in the lungs. In at least some people, there is inflammation all the time, whether there are current symptoms or not.
- The natural cure whackos and the snake oil salesmen are active in the asthma community, just as they are in the diabetes community. If your Aunt Gertrude knows anyone with asthma, she knows how to cure them, too.
- My friend Kerri, who I asked to look this over, adds: "I guess it is important to note, too, that beyond the rescue inhaler there are a variety of other types of treatments that must be taken daily [i.e. inhaled corticosteroids to decrease the inflammation you discussed, but also "long-acting bronchodilators" -- just as the rescue inhaler decreases constriction quickly [not inflammation] during an acute asthma symptom flare, the long-acting version of these bronchodilators work for about 12 hours to attempt to alleviate any constriction before it starts ]."
So that's some of what I learned about asthma. Did I learn anything about awareness?
Well, I read three information from responsible (I think) sources. The "first level" information at all three was, at core, pretty similar. I didn't come across any contradictions. (This "what is asthma?" info was a little harder to find at asthma.com, which seems to have been built assuming that visitors know they or their child have asthma.) So, from this standpoint, there's some consensus as to what 'asthma awareness' is. I think I'd find pretty much the same thing with diabetes, but I don't know.
I guess I'm not much closer to understanding what 'awareness' is. I'll have to think about it a few more months. J
There are some foods that exist simultaneously on several levels. Hamburgers, for example can be bought by the bag at a greasy spoon, enjoyed at a good diner or casual restaurant, or indulged in at a 'white tablecloth' joint.
Such it is with ramen noodles. Most Americans know ramen through the cheap little packets that sustain so many college students between pizzas. Ramen soup (BETTER ramen soup) can also be consumed at the noodle restaurants many cities have. But, increasingly, there's a middle path. Packaged ramen costing $1 to $2 a pack can be purchased at Asian markets, and some companies making Asian foods for American consumers are producing similarly-priced offerings found in some supermarkets.
I've eaten a lot of cheap ramen. Before my diagnosis, I often had a pack or two as a meal. I didn't eat it as a soup, though: I'd cook it, drain it, add butter and part of the seasoning packet and eat it like pasta. For several years, I've rarely had it: it just hasn't seemed like a good idea to get back into that.
Lately, though, I've been getting back into it, although in different ways. Ramen soup is a nice quick meatless meal (although meat can certainly be added), and I have discovered that a ramen soup supper is pretty easy on the rumbly on my tumbly. Plus, it's quick – I can get home, put the water on the stove, and decide exactly what I'm doing while it comes to a boil.
So, after a lifetime of the cheap packets, I've been exploring some of these mid-priced brands. I began by visiting my local Asian market armed with this list (which, you will notice, has PICTURES) and wandered up and down the aisles looking for listed brands – I actually found several. A local supermarket had some other options.
Thus far, I have to say that while I like the flavorings better in the mid-priced options, and the texture of the noodles is better, I'm not sure the difference is worth the additional trouble for me in getting them – especially since I'm inclined to add stuff to my soup anyway.
So what can be added? All sorts of spices, seasonings, and condiments can be added. Precooked or quick-cooking vegetables can be added – scallions are a good option, and I like frozen peas. Precooked meat can be added, if you like. Many people like to stir an egg in right before adding the seasoning packet. Think of it like a sandwich - this is not a time for a recipe, this is a time for figuring out what you like.
Updated to correct a botched hyperlink.
Today's post for Diabetes Blog Week is: "Back by popular demand, let's revisit this prompt from last year! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?"
Since this topic is a "rerun", perhaps it's forgivable that I have written about my dream device before. My dream device would provide ongoing tracking of not only blood glucose but many other things – blood pressure, body temperature, sleep patterns, white blood cell count, hydration – anything that can reasonably be measured and have any impact on our health in the present moment.
But my "super monitor" is only half of it. All this data would be fed into a computer to be added to information like food, body weight, and assessments of emotional state that the monitor couldn't measure. Maybe even weather data could be added. All of this data would be crunched by an algorithm that would look for patterns we're not able to observe for ourselves. Just what is the effect of a short night on our blood pressure? Is that higher weight this morning due to carrying more water? Is our mood really bluer on cloudy days, and does a light box help? It may even be that some of the inexplicable things that insulin users experience might be explained with more data. Did that night of persistent highs also see an elevation in white cell count that might indicate an illness or infection that doesn't yet have symptoms?
Though I'm no scientist, I believe that more complete information. It just has to be, I feel, that when we don't understand what's going on, it's because we don't have a full enough picture of what IS going on. Maybe not always. But sometimes would help.
Today's prompt for Diabetes Blog Week is: "Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?"
I would not trade chronic diseases with anyone. I once heard a story - I don't know how wide-spread it is - about "the trouble pile". It concerns a man who felt deeply burdened by his problems. He hears about a place called "the trouble pile" where you can exchange your sack of problems for another sack that somebody else has left. This sounds like a great plan to him, but when he gets to the pile and comes to understand the things others deal with, he ultimately decides to keep his own. There is kind of a Pollyanna feel to that story, but it nicely expresses how I feel about the notion of trading conditions with someone else.
Has diabetes affected how treat folks with other conditions? Yes. Almost any PWD can regale you with stories about the stupid things the people around them have said or done in regards to their diabetes. One of my most central ethics is "Don't be a jerk", so I don't want to be the guy other people tell eye-rolling stories about.
To illustrate, let me tell you about a way in which I've failed to not be a jerk. Sometimes, when things get especially hairy at work, I've thought something like "this is giving me a migraine" or even "this is giving me a cluster migraine". I've probably said that aloud, perhaps even in the presence of some who actually does experience migraines. But I don't experience migraines, which are real, deeply painful, and life-impacting. I know at least one person in the DOC whose primary advocacy seems to be in regard to migraine.
Explain to me, if you will, how my casual jokes about migraines are very different from jokes about getting diabetes from eating too much. You can't, can you? Neither can I, and I was pretty uncomfortable when I put this together in my mind recently. I've been a jerk in this respect, and I'm going to stop.
But there are a lot of conditions, and most of us can't know much about many of them. So, we can't rely on knowledge to save us from jerkiness. We must I instead focus on treating people with respect, try to be aware of how much we don't know (and that much of what we think we do know may be wrong), and never ever suggest to someone with another condition that we know what they should be doing about it.
After all, it's hard to ever really understand what's in the other person's sack of troubles.
I actually had a decent response in mind for today's "regular" topic for Diabetes Blog Week but had a fun (I hope!) idea for this 'wildcard': "What is the ideal diabetes service animal? Think beyond the obvious and be creative in explaining why your choice is a good one. For example, maybe a seal would make a good service animal - it flaps its flippers and barks every time you get a good blood sugar reading!"
My diabetes service animal would be:
A pug. A magical pug.
See, for now, my meds do a pretty good job of keeping my sugars in some fashion of semi-reasonable, so a high/low alert animal would have to take up a hobby. But the real battleground for me has to do with food and exercise.
How would a pug help?
Well, I've never met a pug. I only know them from pictures. And I've seen plenty of pictures, because they often star in the silly captioned pictures I enjoy so much (see this dog as an example). And from the pictures, I know that pugs are really super good at looking sad, even betrayed, as if they had just found out what you REALLY had the vet do.
Here's how it would work.
ME: Yum, this is one delicious-looking double cheeseburger.
(The magical pug appears and looks terribly sad.)
(The magical pug cocks its head to one side and looks even sadder.)
ME: You....think I should give it to you?
(The magical pug cocks its head to the other side.)
ME: All -right-! HERE!
(The magical pug, looking less sad, scarfs the burger and disappears.)
And my magical pug would help with exercise, too:
ME: Man, this has been a day. I...am...beat!
(The magical pug appears, looking sad, and holding a leash in its mouth.)
ME: But I'm too tired for walkies!
(The magical pug looks betrayed, while doing a little dance that suggests that I will soon be cleaning magical wee-wee out of my non-magical carpet.)
ME: (deeeeeep sigh) Okay. You win. Like always. Let's go.
(I don't know how real pugs are to walk with. But magical pugs maintain a good pace and don't need to sniff something every five feet.)
With my magical pug, I'd lose five pounds a week!
A short open letter to my fellow diabetes bloggers and advocates:
I don't want to describe what put this in my heart, but I want to say this:
You're doing enough.
Time, energy, focus, money, emotional fortitude, courage, and even compassion are limited resources, and we all have different amounts of each. Millions of people count themselves as having full lives just from paying the rent, keeping themselves fed, and not leaving the house looking and smelling like a garbage scow. They're not even caring for a chronic disease, let alone doing advocacy for it.
Relax. I'm doing enough, you're doing enough. We read enough, we write enough, we speak out enough, we support each other enough. Let's try to feel good about what we do in this arena. Diabetes itself is tough: we don't need to give ourselves grief over what we can't do. You're awesome.
Today's prompt for Diabetes Blog Week is: "Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share."
Many of you (beyond those that were there!) will have heard about Simonpalooza, a truly epic series of meetups around the tour our friend Simon from Australia made of the United States. I am fortunate enough to live in one of the tour stops, and it was a great event.
But my greatest diabetes day* was actually the evening before Simonpalooza itself. My friend Jess and her husband Josh were kind enough to host a gathering for the folks that had come in already. (Jess, I can't possibly have thanked you enough for this. Thank you.) It was there that I first met a number of folks ** that I'd come to admire online, "re-uned" with a number of folks that I'd met before, and met several people I hadn't really known online but quickly became important to me. Even more than the people, though, was the fact that I felt comfortable -- something that often doesn't happen for me in social situations. These folks knew some of the things about me that I'm least proud of, and liked me anyway. I listened, I laughed, I hugged, I cracked wise, and I sent a tweet that was a veritable rabbit hole of meta-ness. It was such a good time. No, it was an awesome time.
* Greatest in a tie. There were two other days I seriously considered describing for this post.
** I don't dare name names, because I'd be sure to leave people out, and that would be bad.
Today's prompt for Diabetes Blog Week is: "Recently various petitions have been circulating the Diabetes Online Community, so todaylet’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?"
I don't doubt that other responses to this post will address many of the important issues that impact that lives and health of millions of people with diabetes. I, on the other hand, have chosen a different issue. This issue is important not because of global significance but because it irritates me.
TO: The manufacturers and distributors of non-regulatory medical equipment:
We, the undersigned (or, more probably, -I- the undersigned) wish to bring the following issue to your attention:
Yeah, I know: it's the big boys -- the outfits listed on the stock exchange that need FDA approval to order paper clips -- that are under most of the pressure to step up their game in what they produce for people with diabetes. But I have a bone to pick with you smaller outfits too.
Why can't you make a better pill sorter?
Most of the features I want are available in one sorter or another: a mechanism to keep compartments from opening accidentally in a briefcase, nice rounded bottoms to the compartments so that pills can be removed cleanly, compartment lid hinges that aren't traps for the smaller pills, and the ability to last more than a couple of months before the hinges start getting wonky. But you can't seem to sell me one with all of these things.
But there's something else, a feature I haven't yet seen.
Friends, materials scientists have been studying plastics for generations now. They have developed varieties usable for everything from doggie bags to car bodies.
Why can't you make sorters out of a material that doesn't hold onto gel tabs with the tenacity of a sports agent to a 6'10" high school junior who can't miss a jump shot?
Okay, that might be a SLIGHT exaggeration. But c'mon!
With respect and urgency,