When medical technology succeeds
For those of you aren’t aware, I’ve had Type II Diabetes since before my diagnosis in 2002. That’s 16 years so far of medications, finger pricks, blood tests, and constant stress in the back of my mind about my health. I’m medically disposed to such a disease, with my New England food tastes and diet and a genetic disposition towards conditions such as this. For reference, on the day I was diagnosed, my blood sugar level was 459. Normal is 120. So suffice it to say I’ve got it pretty bad in that regard.
For the first 12 years of my diagnosis, I treated my condition with a combination of moderate diet control (I struggle with this to this day, I admit), monitoring of my blood sugar level through finger prick tests 3-4 times a day, and a variety of different medications with a litany of side effects, including various bathroom issues I won’t elaborate on, and a general feeling of lethargy and discomfort. Not to mention some of the worst nighttime leg cramps I’ve ever experienced. It’s no fun going from dream sleep to standing next to your bed stretching out a locked up calf in 2 seconds flat.
By 2014 I’d stopped taking my medications regularly. I realize most people will question this decision but I felt so much better when not on them. The cramps stopped, the various other issues stopped, and I felt healthy and normal. The medications that treated my diabetes that kept me healthy simply made me feel sick all the time. I was growing increasingly frustrated with my inability to control my blood sugar in the absence of my medications and began to not care about that either. I generally consider myself to be an intelligent person, so I understand the consequences of my decision at the time, but to be fair, it was an emotional one built around 10+ years of trying to manage a disease the required me to be constantly vigilant and feel like I just wanted to be in bed all the time.
In 2015 I was running an A1C of over 12, twice the normal level. I asked my primary care physician to recommend a specialist and he referred me to a clinic in Santa Barbara for treatment. My new specialist approached my mental state, which was beyond frustration at this point, by simply asking me what I felt I needed to do to make things better. We agreed to immediately go off all of the medications that were making me feel ill (for the record, metformin is an evil thing) and switch to insulin for full treatment. That helped a great deal, getting back down to an A1C of 7.5 within six months. Additionally, I’ve tried several new medications, some that use the kidneys or liver to filter out high blood sugars, with pretty successful results.
The biggest frustration though was my inability to determine how successful I was in managing my illness. Let’s take the finger prick blood tests as an example. I’m about to have dinner, I take my blood, and it’s 160. I’m going to decide to inject insulin, and I need to decide how much. How do I decide? 160 as a number doesn’t mean anything. It doesn’t tell me if I’m going up or down. It has no context. So what do I do now?
On top of that, let’s say I’m at 185, but I think I’ve had a good day overall. I ate well in the morning, woke up at 115, and I’ve been doing well (or so I thought). I would expect to be maybe 130, see 185, and wonder how that happened, and get super frustrated at what looks like a failure. Running into that day after day gets very discouraging and frustrating. You wonder why you’re trying at all.
Which brings me to the biggest change in my treatment. I agreed to try a continuous glucose monitor, an injectable monitoring device that provides real time constant feedback on where my blood sugar levels are. I currently use the G5 by Dexcom. It’s the little square device in the lower left of this image.
So, first things first. Applying this device is fairly simple. It is no more or less painful than an insulin injection and uses medical adhesive to attach to my left side. It works by injecting a small, needle-thin sensor underneath the skin. Once there, I barely notice it at all, until it’s time to remove it, which is much like any band aid. It’s impossible to notice underneath my shirt and very easy to forget.
What it gives in return is clarity on where I am at any given moment. It takes that 185 I had before and tells me two things. First, whether I am going up or down, and second, how quickly that transition is happening. A 185 coming down quickly from a high number due to a big lunch is a big difference between a slow rise up to 185 that may not level off any time soon. The device checks my readings every couple of minutes, and I can spot trends in my blood sugar level immediately.
This allows me to thoughtfully examine my daily routine. I can watch my sugar levels after meals, or after snacks, and gain an understanding of the impact of certain foods on my bloodstream In addition, I can intelligently target my insulin levels when I do inject before meals. Before, 185 might mean 10 units of medication. But now, a 185 on its way down might mean 5, but a 185 that’s either level or rising right before I sit down to dinner at Olive Garden might mean 20 units (or a salad instead of pasta). Trends allow me to change behavior on the fly, and react quickly to changes in my blood levels. It’s an amount of control you don’t have when only checking a few times a day, and a way to make sure you have a firm grip on your situation and control over what the number means.
This reduced my stress and frustration level significantly.
Further, there’s an app for my phone that I sync to the device. This not only allows me to track levels, but it will alarm when I go out of a healthy range. There was a period of time where I would have instances of very low blood sugar at night. I’d wake up shaking and sweaty and have to stumble downstairs to grab a drink and a snack to counteract the low blood sugar. But the device will set off an alarm if I start to fall too low, and can warn me before it gets too bad…getting me out of bed before I become possibly too weak to move. You can also set alarms on highs if you want to be notified that you might need an injection or maybe eat less. So with a glance, I can check my phone and see where I am at at any point of the day.
There have been a few challenges. In theory the device can go anywhere on either side of the abdomen, and you are supposed to rotate its location. But I’m a bit on the hairy side as far as body hair, and for some reason, it never stays attached to my right side, so I keep it always on my left. There was the time I hit it getting out of the van and ripped it off, but beyond the surprise, that was no worse than a bad band aid removal.
It says it is waterproof but I haven’t tried that yet. I shower with it but take it off when I swim, which limits my swimming to one day on the weekend. And finally, it’s not supposed to go through any sort of MRI or metal detector, so I don’t take it with me when I travel. I had a notably bad incident in Austin trying to wear it through TSA, and it’s not necessarily worth the trouble to try and get it through security.
But to be clear, in particular if you are accustomed to giving yourself injections, there’s no reason not to try a CGM. I can tell you for sure it’s made managing my disease much more tolerable, and when I do have periods of frustration, it’s a lot easier to slap a device back on and get back on the routine. It’s reduced my overall blood sugar levels by 60% since I’ve started using it. I recommend it for sure.
All images copyright Dexcom (https://www.dexcom.com/)
On the Bay Review: so far ahead of our time.
Most who know me know I’m not always much for nostalgia, but lately I’ve been wondering just what would have happened if I had been able to technically solve a problem back in 2001 given what I know now, and what technologies are available now. As an author, a poet, and an advocate of independent publishing, I do sometimes wonder if the Bay Review, an online journal I started with a friend of mine back in 2000, was simply too far ahead of its time.
In early 2000 I was just starting to get into web development. I had achieved my dream of becoming a programmer with PropertyFirst.com, an online commercial real estate platform that would eventually become LoopNet and be my professional home for close to 17 years. I was also writing a lot and wanted to see what we could do to publish people like myself online. At the time, independent publishing didn’t exist outside of large companies who would charge thousands of dollars to create print books, and there was little to no online publication available to independent authors. The idea of publishing content online was in its infancy.
So a friend of mine and I put up a website called the Bay Review. It was intended to gather submissions from various people via email, and then we’d put them into HTML format and publish them on the site every month. It took off much more than we would have expected, and ultimately we had to shut it down after six months for a variety of reasons that seem easily solvable today, close to 17 years later.
First, the success. Within 5 months we were getting submissions at a rate of close to 20 a day. This was back when Google and Paid Search and SEM and SEO weren’t even a thing. This happened with Yahoo! Search and word of mouth and viral goodness. By April of 2001 we were getting more than 400 submissions a month and it became impossible to keep up. I was converting submissions to HTML by hand because the technology to automatically convert Word documents to HTML did not yet exist in a way that would survive its use. Basically, any attempt to automate Office 2000 died spectacularly on first execution. This was the biggest first failure, and when it was apparent keeping up with our success was going to be a full time job, we had no recourse other than to shut it down so we could stay at our real full time jobs.
And that was because of the 2nd problem; we had no clean way to monetize. A paid subscription might have been worthwhile but seemed unlikely, as this was the early days of starting to get everything for free, and although we had 400+ submissions, our reader traffic was not yet that high, and would not support enough memberships to make it worth our while. We had the same sorts of conversations about monetization strategies you see now in the marketplace, including the possibility of introducing micropayments, or charging readers pennies for pages read as they went through the website. Sadly, though, we had no time to build such a solution under the onslaught we found ourselves.
And the trolls! Or so we would call them now. My friend and I instituted a family friendly standard, meaning no adult content. I had to hand screen or read 400 submissions on top of the conversion, and when we accidentally let a f-bomb through, the message boards lit up with complaints about other works that had been rejected. Instead of an understanding of the difficulty we faced and the effort we put in, we were called out for failure.
It was an impossible situation to maintain, and we closed down.
With all that, I regret many times that we did not have the technology then to do what systems do now, whether its automatic document conversion or automated content screening. We might be sitting here today as one of the pioneers of online publishing.
Long live the Bay Review.
On Meeting Your Muse (2014 Elohim-fest), and the blessings of the Watch
We all have our inspirations, the people who bring out the best of us. I have managed to do a lot of things over the course of my life that might be unexpected were you to meet me for the first time. My forays into music and writing are two of them.
I can still remember the defining moments that drove me to play music: When I was 14 and picked up a guitar for the first time I was told I would never be a guitar player because I did not have the “look”; In my sophomore year of high school, the first time I saw KISS live on video, I was hooked on bass and hooked on the epic coolness that is Gene Simmons on stage and thought, if I could not be a guitar player, perhaps I could be a bass player. In my senior year of high school I started up a fledgling rock band and began to learn bass to MTV videos, specifically to the galloping awesomeness of Iron Maiden’s Steve Harris.
But the one thing that got me absolutely driven to play was my first glimpse of the brilliance that is George Lynch. Although he is a guitar player, and I am a bass player who can also play guitar, his music is what drove me to play. I consider him a muse, one of my “heroes”. Someday I hope to simply shake his hand and tell him how much of a difference he made in my life.
I mention George, and the intensity of my love for his work, as well as the positive and negative events that led to what I consider to be a successful music career, to put context into the story of this event. To a lesser degree professionally, but perhaps to a larger degree personally, I have a similar muse in the writing world. In many ways his work is so powerful, so amazing, that at times it seems overwhelming for me to even engage as an author; I’ve written tons of poetry but I find it difficult to write actual stories because I just know it can never be that good. I would love to one day be considered a good author, and in the last few years I’ve tried to write short stories and had difficulties with finding the “voice” of various characters as I work through story ideas.
One way that I’ve managed to get the writing juices flowing is through an online community known as “Kevin’s Watch”. I joined the Watch in 2008 and have nearly 2,000 posts there. You can check it out here when you have the time and if you are so inclined. It’s simply an awesome community of people with like interests and who have actually become friends. And it’s not in the Facebook friends kind of way, either. We all have an interest in our favorite fantasy author, but on top of that we discuss other novels, other artists, tell jokes, and even rant at each other in one of the more civil (allegedly) political forums, our very own “Think Tank”. The group has turned out a few anthologies of short stories and I’ve used that as well as some internal discussion forums to try to move my writing forward.
All of which is background for an event that happened last weekend in Albuquerque, New Mexico, the home of my favorite author, Stephen R. Donaldson. He is the author of the Series That Changed Me, the incomparable Chronicles of Thomas Covenant, the Unbeliever. They are epic fantasy in a way that Tolkien is not, driven by strong characterization and heroic characters that grip you with their passion and dedication to what is right. In the midst of this amazing world, Thomas Covenant stands as an embodiment of all that could be wrong with the universe, an anti-hero who is driven to criminal actions by his inability to believe in a fantasy world filled with the purity of untainted love and beauty. There is no more vivid world to lose yourself in, no more vivid story to immerse yourself in. A Second and Last Chronicles have followed, along with Mordant’s Need, a two-part series that is well worth reading, and the Gap Sequence, a five volume brutal examination of man’s basest desires and depravity that builds for three and half books to a gripping climax that leaves you turning page after page after page, an absolutely transcendent work of ever-increasing intensity that doesn’t let up for more than a thousand pages. And there are books of short stories as well as a mystery series.
Stephen R. Donaldson’s website
For a different perspective on this event, visit Lynne Cantwell’s fantastic blog at Hearth/Myth
For the last decade, after the release of a book, Mr. Donaldson has agreed to meet with fans of his, mostly from Kevin’s Watch, for a dinner and interactive Q&A session. Dubbed “Elohim-fest” after a race of characters that Thomas Covenant encounters, this “meet and greet” has reached its fourth incarnation, with over 40 of us attending from as far away as Australia and Finland. I myself attended for the first time, with two goals. One was to merely shake the man’s hand and acknowledge everything he’s done for me; the other was to ask him one of those “how do you do what you do” questions, specifically around the struggles I’ve had with voice in my stories. In poetry, meter and rhyme can dictate voice; in prose, I still struggled with it.
Asking My Question
So I asked him my question, something on the order of, “How do you write dialogue that sounds real to your readers, and that doesn’t sound like something you yourself would say?”
I can’t really tell you what he said to be honest, because as he answered the question, he maintained eye contact with me the whole time, and just to have him know for that few minutes that I existed was more than enough! It was beyond words.
Stephen R. Donaldson
That in itself was amazing. To actually meet a hero of mine. How often do people really get to do that?
But the weekend was so much more than that, mostly because Kevin’s Watch, as a community beyond your everyday internet community, made it that. I’m fairly socially awkward around people until I get to know them, and to be honest, a small part of me was dreading dropping myself into an environment with people I’d only met online. Back in 1997 I was part of the first “internet chat rooms” at Yahoo! and had some disastrous “meet and greet” events in those days. Plus I just don’t usually believe that what I have to say is going to be of much interest to others. But Danlo (the host of the event and the man we all owe much thanks to, along with his lovely wife) made everyone feel at home at a gathering the night before the event, and I completely felt as if I’d known these people all my life, which in a way, I sort of have, given my now 6 years as a member of the Watch. I had so many amazing conversations and talked to people from all over the world in ways that I would not have done without the Watch. I made some unexpected friends as well. I can’t wait for the next one when they have it…as much for another chance to sit in a room with my favorite author as to simply talk about writing with people who are engaged.
So, the moral of the story, I suppose, is to go and meet your muses if you can. And when you do, I hope that you will meet a bunch of wonderful people who are on the same journey, and be able to count them as friends. It’s a great feeling and one that is hard to describe, and even harder to replicate.
Be welcome and true.
My Quora
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Robert Hope 