Saturday (July 24) marks my 35th anniversary living with type 1 diabetes, and although I have plently of reason to celebrate (I'm still largely complication-free after 3 and a half decades of living with this f'ing disease), but I don't really feel much like celebrating. (My CWD Quilt Square can be seen HERE [my sister's follows mine, FYI]).
No, it's not about all the unsubstantiated "cure will be here in another 5-10 years" fiction that medical people once told me regularly; after nearly 4 decades with this disease, I'm no longer a naïve fool. Good control does not eliminate the possibility of complications, but merely reduces the odds of getting them.
My current funk could just be another round of diabetes burnout, which frankly hits most people living with a chronic illness for any duration, but I think my fellow diabetes blogger colleague Bernard Farrell said it best at the 2011 Roche Social Media summit which I attended last month but have yet to write about: it becomes overwhelming and even depressing to live, breathe and think about diabetes 24/7/365 including blogging and elsewhere online (I'm paraphrasing quite a bit here), and sometimes we need to take a break from it just to keep our sanity. The reality is that even a "model patient" gets damn sick of talking about it all the time, and if they don't, my guess is they will at some point. As much as I enjoy being a part of such a terrific community, there's more to life than diabetes, or at least there SHOULD be in order for there to be any life balance.
I have NOT abandoned self-care, nor have I abandoned my presence in the diabetes online community. My acclaimed Twitter feed continues (that comes pretty easily to me), and I've done the weekly chats, too, but blogging: not so much as of late. It's not that I've given up on blogging and I must admit I miss a few of the earlier bloggers who have since given it up, including Vivian Schaffers (@RedbudMama) of DanielDoo who decided to stop blogging recently, but I'm of the mindset that if I don't have anything really new or interesting (from my perspective) to write about, then I don't really want to write. Some of my readers miss me, but rest assured, I have not abandoned this blog, only that I need some break time to provide me a fresher perspective on things before I start writing again with any frequency.
When I first started blogging back in September 2005 (you can catch my very un-glamorous early posts HERE), my goal was never specifically to talk about MY life with diabetes, but to fill what I saw as an enormous void in the media about legitimate news on diabetes, and also to use this to vent some of my well-deserved frustation with the media's blatant disservice to diabetes coverage. The media has been preaching the same monotonous story when it comes to diabetes, and it really is starting to sound like a broken record (for the iTunes generation: in the old days, when music was recorded on plastic records and when those records were scratched — hence the term broken — part of the recorded music would repeat itself). No wonder no one cares about diabetes — the media are simply unable to make the news remotely interesting. My goal was twofold: 1) communicate useful, interesting information about diabetes and 2) provide a patient perspective to that news. I believe I've accomplished that, and not just with my blog, but also my Twitter feed which now has over 700 followers.
Plenty To Write About
I have plenty of stuff I COULD write about. For example, the recent social media summit, which I'll cover ... eventually. In the interim, if you're interested, I would refer you to Wil Dubois' coverage of the events, because his take-away was very similar to mine. Catch his post HERE for a good slice of that, and at some point, I hope to share some things that my peers have not yet covered.
Another example of some coverage-worthy stuff: diaTribe recently published a free book entitled "Targeting a Cure for Type 1 Diabetes" which I actually thought was pretty darn good IMHO, although I take issue with a few points in their assessment (what kind of honest critic would I be if I didn't have any issues?).
What points, you ask?
Well, perhaps I'll save them for a formal book review when I feel like writing again, but most notable are the four pages of "Advance Acclaim" from so-called diabetes experts which struck me as more trumpeting the organization's own horn about their contacts in the field rather than adding any incremental value to the contents of their work.
I mean really, who's their audience for this book, and do they really think we care what these people thought of the book? Some acknowledgement is OK, but FOUR pages worth? That was overkill. But once you pass that, there is some great content there.
I also continue take issue with the incredibly naïve presumption that a closed-loop insulin pump system or Roche/Genentech's costly new drug for diabetic macular edema will, in Aaron Kowalski's (of the JDRF) words from the "Forward" statement he wrote for the book "... will significantly ease the burden of diabetes, reduce the risk of complications, and keep people healthy while we drive toward a cure." I get the logic, but it's a pretty daring presumption that all who want or need access to these treatments will actually have them, especially when the data suggests otherwise.
For that reason, I think devoting so much content of the book — indeed, an entire chapter — dedicated to a closed-loop insulin-delivery system also seems like overkill. I know diaTribe/Close Concerns is intimately familiar with this, but that does not render it appropriate content for a book on CURES. Besides, while these devices are very alluring to technology folks and, yes, even some doctors, a number of interviews has consistently shown that few patients (or parents of kids with type 1 diabetes) actually view this as a cure. Also, knowing that so many patients who might benefit from such a device will be unable to afford is more typical of consultants who may have a perspective which simply out-of-touch with the way things really work. So far, the JDRF is pushing hard down this path, but the money-is-no-object attitude towards treatment and care is an area I will continue to call the organization's attention to because it's an unfortunate reality today, unlike a yet-to-be-approved closed-loop insulin delivery device, which still faces significant challenges attaining U.S. regulatory approval.
Let me offer the following to support my position:
Today, more than 3 million Americans who live with diabetes lack ANY form of healthcare coverage according to my conservate estimations using data from the Kaiser Family Foundation and the CDC, and whether these people (many of whom actually work full-time in jobs such as waiters/waitresses, cashiers, and other laborers) will be able to afford coverage when state insurance exchanges are established remains to be seen. Many will (whether willingly or not) likely take the most rational choice to pay a fine because it's most likely to be far less costly than the insurance would be, and if Congressional born-again budget hawks get their way, subsidies via tax breaks for these people will be one of the first elements of healthcare reform to be killed because they believe the U.S. Federal Budget cannot afford it (I have to ask where these people were when we went from having a budget surplus when President Bill Clinton left office to the budget-busting deficits President Barack Obama actually inherited when he took office?). That's a sad reality in the U.S. today. What's more, the out-of-pocket costs being passed on even to employees who actually receive healthcare insurance via their employers is growing far beyond the rate of inflation. In fact, the median deductible for traditional PPO plans (the most common type of insurance offered by U.S. employers) doubled in 2008 to $1,000 according to a study from Human Resources consulting firm Mercer (see HERE).
With U.S. unemployment (and underemployment) at levels not witnessed since the late 1970's (that seems to be a recurring theme in this post, meaning the 1970's) and job growth unlikely to pick up at a pace needed to put many back to work before 2014 as the economist's consensus seems to suggest is likely, so the access issue isn't going away anytime soon.
Finally, Chapter 4 is a bit empty from my perspective. While it is indeed early on the regeneration front, I cannot help but get the impression that the writers didn't have many contacts at any of the companies in the regeneration front, so they covered a few studies already published in the scientific and/or medical journals, but beyond that, not much is very new.
By and large, however, I really DO recommend downloading their book and having a look at it. Most is excellent and provides a realistic assessment of where things stand, and their conclusions that various cure components are likely to require some combination of new therapies (such as autoimmunity treatments) to be effective. While their time assessments are excellent, I would just note that diaTribe failed to address anything on the topic of cost. For more added assessment on that, I recommend visiting my November 2010 post entitled "The $100,000 Diabetes Cure" (After all, why not plug my own work? I think I have reason proud of it).
A Departure from Typical Scott's Web Log Content
Beyond that, I am taking a bit of a departure from my usual diabetes-related stuff. It's my blog, so I'll write about whatever I feel like! With my 35th dia-versary, perhaps I've been having a bit of a middle-age crisis. After all, I now have a few grey hairs on the temple, and although age also brigs wisdom, it brings other less-desirable stuff, too. (I cannot help but think of the Sex In the City episode where Kim Cattrall's character discovers a grey hair — "down there" — and says that if she were to pluck that hair, four more could come to it's funeral, so she decides to use Clairol hair-coloring to eliminate the problem and unfortunately leaves the hair dye in too long so it's now bight red like Bozo the Clown, hence she believes she has "Bozo the Bush") ... and now that I've offended at least a few readers, back to my own mid-life issues.
Acknowledging the issue is the first step towards dealing with it, so I decided to celebrate (as fellow d-blogger Wil Dubois said at the Roche Social Media Summit, his family celebrates not only successes, but also really big failures, too) so just maybe my mid-life funk could be included among those things.
Apparently, I'm not alone in celebrating or at least acknowledging the period when discos and mood rings, halter tops, and bell bottoms were still in vogue. Recently, a book co-authored by Gael Fashingbauer Cooper (she blogs at http://pcjm.blogspot.com/ or on Twitter @genxtinct, and has another book-related blog called GenXTinct) entitled "Whatever Happened to Pudding Pops? which was recently featured on NPR's popular "All Things Considered" program. You can listen to that story at NPR News HERE (if you search NPR, use "The Sweet Taste Of 'Pop' Culture Nostalgia" in the search field):
My opinion on that book: a definite read if you fall within the relevant age group, and although there are few facts that are incorrect (for example, they failed to note that several TV shows are now available on DVD), it's not heavy reading. The book is a series of vignettes of maybe 2-3 pages each covering some aspect of pop culture that was prevalent in the 1970's and 1980's, so it can be read in bits and pieces — perfect bathroom reading (comedienne Joan Rivers used to say the same thing about the National Enquirer, and how it was replacing bran muffins, but I digress). I guess that means I'm really officially middle-aged, as there's now even a book to chronicle it! On the subject of stuff from the 1970's, readers may be humored to learn that a fair number of the products that were sold in the 1970's is actually still available in what's pretty much their original formats.
For example, if you were one of those people who used the ORIGINAL Clairol Herbal Essence shampoo (you know, the green stuff in an unimaginative shaped bottle) that featured a cartoon of a blonde hippie woman on the bottle, or "Gee, Your Hair Smells Terrific" shampoo, "Body On Tap" shampoo featuring a magical haircare ingredient: beer, "Lemon Up" shampoo, and even a variety of "Agree" shampoo to help fight the greasies, even though regular hair-washing also takes care of that 1970's personal grooming challenge — apparently, there may have been an oil shortage back then, just not in people's hair!) which they call "Flat to Fluffy" shampoo, even a recreated version of the Farah Fawcett-endorsed Fabergé Organics Wheat Germ Oil & Honey Shampoo, you can still buy all of that stuff! But it's not limited to shampoo, and has numerous other relics and throwbacks from the 1970's ranging from vintage monopoly games and Fisher Price toys, know that you can buy many of those items at the online "Vermont Country Store" which describes itself as "Purveyors of the Practical and Hard-to-Find Since 1946" carries these items. To be sure, a bottle of "Gee, Your Hair Smells Terrific" (apprently, Vermont Country Store is actually licensed to use that registered trademark) or the original green, Herbal Essence shampoo (they call it "Country Herbal Shampoo" since Procter & Gamble still sells a reformulated version and still owns the trademark) isn't cheap.
Expect that a trip to the beauty salon of your past to be rather costly indeed: a bottle of "Gee, Your Hair Smells Terrific" will set you back $14.95 plus another $5.95 for shipping. At that price, you could just as well buy salon haircare products, but it might not transport you back to "the garden of earthly delights" in the same way as one of these products will.
While I'm on the subject of the 1970's, I've prepared a playlist of some tunes from that decade, which you may listen to HERE:
Anyway, with that deviation from life with diabetes, I think I may be ready soon to return to blogging about it, only perhaps with an occasional deviation to clear my mind!