Thursday, September 09, 2010

A Diabetes Meme

There are Twitter #Memes and there are various other recurrent "themes" that exist around the social media environment. I cannot even begin to address them all here. I won't even try, but let's just say they are similar to what used to what used to be known in the more innocent times as "Chain Letters" (see here for some background on that). They happen to serve a purpose (which can be good or bad) but let's just say that work is keeping largely out of the social media space these days. That could be an entire subject unto itself, but let's just say that since a colleague at work left the company, my time for blogging and anything else is pretty much consumed by other activities these days, and I'm spending quite a bit more time at the office. I'm now picking up the slack for two people (myself and someone else) these days, but I'm still around, its just that my time is consumed by other things. People with diabetes have a noticable footprint in the social media space and it seems only logical that there will occasionally be diabetes-themed memes. This one began with Kerri Sparling, but a fair number of others have been going with it (including Hannah, T1DisneyGurl, Jonah and George "Ninjabetic" Simmons just to name a few). I will share my diabetes meme with everyone and hope to be back to a more normal schedule in the not-too-distant future (if anyone with a marketing research/statistics background in NYC is looking for work, let me know!).

A Diabetes Meme

What type of diabetes do you have: Type 1

When were you diagnosed: July 24, 1976 (check out my CWD Quilt Square, and my sister's quilt square which is right next to it) at age 7 so that makes 34 years of hearing how a cure is "right around the corner" ... that, and how "lucky" I should feel to have a disease that can actually be managed (conveniently overlooking the not-so-small fact that it's a 24/7/365 job with no vacation and no real reward).

What's your current blood sugar: 106 mg/dL, not a bad reading as I head off to lunch!

What kind of meter do you use: I'm actually exhausting my remaining supply of One Touch Ultra test strips (which I use with the One Touch Ultra 2 meter), but I am migrating to the Bayer Contour USB meter/strips when those supplies are gone. I have a bunch of Bayer Contour strips just waiting for me!

How many times a day do you test your blood sugar: Anywhere from 10-15 times per day. Having no hypo signs for the past 25 years is a big reason for it. It might be easier with a CGM device, but the manufacturers (such as Dexcom) have done a really bad job getting insurance coverage for their devices, leaving it to nonprofits like JDRF to pay for it -- shame on them. Not only that, but the company never even followed up with me to ask if I got coverage, or volunteered to help with that, doesn't give me warm & fuzzy feelings about Dexcom, Inc.

What's a "high" number for you: Anything over 160 mg/dl at 3 hours post-dosage of insulin. Otherwise, it's a moving target because there's still insulin on board.

What's do you consider "low": Well, anything under 60 mg/dl is by definition low, but I have had instances where I've "felt" low at 63 mg/dL and other instances where I felt fine at 40 mg/dL but tested because it had been a few hours since dosing and had a nasty surprise that I couldn't quite believe. Given the +/- 25% accuracy 90% of the time with of our current meters, this explains why its possible to have such different responses to these readings.

What's your favorite low blood sugar reaction treater: I am partial to glucose tablets or Smarties, but there are times when I just cannot stand to turn my crowned molars into detrose grinders with their nasty, chalky consistency. That's one reason I have become somewhat enamored with the Dex4 Liquid Blast (also sold under the brand names of many pharmacy chains). Each tiny bottle contains exactly 16 grams of rapid-acting carbohydrate, yet does not require the brutality to one's teeth, and they work really fast! I'm partial to the Berry Blast flavor, but Lemon Lime isn't bad, either. These are not gooey like honey or pancake syrup, and they go down in one shot, just like a shot of tequila one might have at a bar, but without any gross after-taste or a need for salt! These things rock!

Describe your dream endo: I think I have one now. He actually listens much better and more frequently than he actually talks, which IMHO, is VERY important.

What's your biggest diabetes achievement: Let's see, I am still kicking without any notable complications after 34 years, so that's pretty good, wouldn't you say?!

What's your biggest diabetes-related fear: I have already had some not-so-fun hypo experiences and truthfully, for me, those were far scarier than any type of long-term complication. But I would say I think that kidney failure is probably the most grueling complication of diabetes. Sure, blindness or limb amputation sounds horrific, but you can adjust and move on with both. With renal failure, you need to have your blood filtered by a machine for several hours 4 times a week while you wait for a replacement organ for what could be years, if it ever comes. You may literally die waiting for a new organ. In the Netherlands, the system works differently: you are automatically an organ donor unless you explicitly opt-out. As a result, far fewer people in Holland die waiting for new organs.

Who's on your support team: My partner, my cat (yes, Phyllis is part of the team -- she's woken me from a sound sleep with hypos before, so that qualifies!), family, close friends, and of course, the diabetes social media/blogosphere!

Do you think there will be a cure in your lifetime: Do I think there will be a cure? Let me put it this way: a lot of progress in the right direction has been made, but the medical profession has consistently under-estimated this disease. While we could see some autoimmunity treatments for type 1 diabetes, my thoughts are that even these may not work in every patient -- if they are ever approved. The issue is that a treatment may work like a dream in one patient, and work like a placebo in another. The real concern in my mind is that drug companies may not look at whether a treatment works in certain segments because they're mainly interested in blockbusters, so they might just give up. Once that's solved, we still need to fix the other not-so-little problem: the immune system has destroyed what few beta cells exist. I don't believe there's a conspiracy of diabetes industry because this industry just isn't that well coordinated. But the fact remains that so many researchers and doctors are fixated on the idea of glycemic control that they're completely blind/oblivious to anything else. That's no way to cure a disease! My friend Deb Butterfield once eloquently wrote "In order for this disease to be cured, there needs to be a fundamental shift in the way diabetes is viewed. We need to close the gap between the perception of diabetes as a controllable condition and the reality that it is one of the world’s oldest, deadliest, and most pervasive diseases."

What is a "cure" to you: One thing I AM certain about: a cure must pass a few tests which are as follows: 1) It must deliver absolutely perfect blood sugar control at all times without testing, costly ongoing supplies and/or regular doctor's visits 4 (or more) times a year. Also, it must result in an average lifespan that is reasonably close to normal assuming no other ailments exist, although the damage done by years of diabetes may make this different for each patient. 2) It does not require a lifetime of immunsuppressive drugs or any other chronic drug and/or medical device requirements (although an occasional, semi-regular treatment "update" or "booster" would be acceptable). Also, it seems very likely that any cure will require separate components, such as one treatment for autoimmunity, and another for islet restoration either via transplantation or regeneration -- and even if both components require periodic re-treatments, that's still a cure in my book). The American Diabetes Association says that is not a cure, but I beg to differ, yet they are singing the praises for an artificial pancreas that doesn't even exist outside of a laboratory today. WTF? An artificial pancreas is not even close to a cure definition. For one thing, it requires costly ongoing supplies, insulin, infusion sets, blood glucose sensors, testing supplies for calibration, etc. These things must be adjusted, refilled and/or replaced constantly. Second, it is very costly and will be largely inaccessible to large segments of the population, who deal with runaway healthcare costs today: high deductible amounts, caps on durable medical equipment coverage, plus, who the hell wants to wear all that s#!t 24/7/365?

The most annoying thing people say to you about your diabetes is: that diabetes is somehow "mine" (which this memo just insinuated, BTW). I have diabetes because the medical profession has consistently failed to restore my health, not because of something I did or did not do. Almost by definition, that makes diabetes "theirs" and not "mine", so don't try to blame me for anything that doesn't go right.

What is the most common misconception about diabetes: There are a few, much of which is due to the public's widespread ignorance about this disease. First, that type 1 diabetes can be controlled or even reversed with diet and exercise. Second is that it is possible to live a "live a normal life" with diabetes -- this comes from diabetes educators all the time, and they are clueless. (Catch this thread on Diabetes Daily if you need evidence). The reality is there's very little that is normal about it. People need not allow diabetes to stop them from any of their personal goals or objectives, but do not lie and call it "normal". Sponteneity ... kiss it goodbye. Ongoing hassles, often when you need it least (like when you're sick with the flu or something), will become your new "normal".

If you could say one thing to your pancreas, what would it be: My pancreas actually works producing digestive enzymes which are the organ's primary function. It is the Islets of Langerhans that constitute less than 1% of the organ's total mass, specifically the pancreatic beta cells which produce insulin and amylin, that no longer work because they were killed by the body's immune system. To those guys, I would say "Take it like a man! Don't just roll over and play dead when these islet antibodies attack. Why were you such a wimp on this? You suck!"


Savage said...

Hello Scott,
I read with much interest your blog of 9/9. This month makes it 53 years I've had insulin dependent diabetes. Joslin wanted to bring me up to Boston to give me a bronze medal, but I'm holding out for the gold. I hope you feel the same.
I wrote a memoir about having diabetes all these years that was supposed to be published in '08 by Farrer, Straus & Giroux, but was shelved when the economic climate changed and my editor over there was also shelved--these things happen, of course--but I decided not to wait, as my agent suggested, for the situation to ease or reverse itself. I published it as an e-book and it's been doing pretty well.
I wrote the book mainly because so little is understood about he emotional components of diabetes and what it's like to live with a disease such as this especially as an adolescent and "young" adult. The title of the book is: JUNK SICK: CONFESSIONS OF AN UNCONTROLLED DIABETIC, and you can get a look at it, if you wish, by either googling my name or going to:
I, too, live in NYC and am working on a new piece of fiction as well as working to stay out of a cardboard box. I'm sure you know how that goes. I'd certainly like to hear from a fellow traveler.
Take care of yourself, brother,
Norman Savage

jpnairn said...

I really like your very well thought out and detailed description of what is and isn't a cure.
I also appreciated the link to Deb Butterfield's site.
She has a lot of thoughts in common with FAIR:
Fair Allocations in Research Foundation.

George said...

How is making yourself bleed on a daily basis and sticking a needle in your stomach normal?

I hate that too. And "Diabetes doesn't have to stop you. You can do anything when you have diabetes" to which I call bullshit on since I could not join the Air Force and that was only because of diabetes. So there! :)

Sorry for the venting my friend.