This week, over at Diabetes Daily, founders David and Elizabeth Edelman are running Newly Diagnosed Week, where the contributing bloggers are posting their tips. I thought it was a great idea — we need to talk a lot more about that free-fall we all experience when our diabetes begins — so I’ve asked friend and fellow blogger Allison Blass to share some of her tips on how to handle your new diabetes diagnosis:

A Guest Post by Allison Blass

I was diagnosed with type 1 diabetes nearly 16 years ago at the tender age of 8. At such a young age, my diabetes diagnosis was not just my own. It was also a diagnosis for my parents, who would be my caretakers for many years to come. Young children are not mature or responsible enough to handle such a complex disease on their own (and some would argue neither are teens or adults!), but a diagnosis of a child affects the entire family. So while I have my own tips to share about being a newly diagnosed diabetic, I thought I would bring a couple of people who know what it was like the best: my parents.

The Blass Family’s Tips for Succeeding with Diabetes

When I decided to write this guest post, I called my parents and told them about this writing assignment. My dad put me on speaker phone and my parents and I spent a few minutes going over some of important tips for handling a diabetes diagnosis.

My dad, David, started off with three main points:

1) Embrace it. Don’t go into denial. There’s no way around it.
2) Normalize it.
3) Get disciplined.

I asked my dad what he meant by “normalize it.” He replied, “It’s part of your normal life now, just as any other hygienic thing you do in your life.” He emphasized that establishing a routine was key for dealing with the “800 pound gorilla” that had just moved into our house. We ate dinner at the same time; we had a routine for meals and activities. “As boring as it may sound, that’s how you embrace it.” This isn’t to say you can’t be frustrated, angry, confused and the myriad of emotions that come with diabetes. But day-to-day, you have to integrate it into your life and make it as “normal” as possible because it is your new normal.

My mom, Caren, recalled the biggest challenge at the beginning was preparedness. She said, “Often times because it wasn’t normalized and routined, we often expected everybody else to remember. We often forgot to pack supplies. But the family has to be a team. You can’t blame each other for not being there. Often times parents don’t have their act together. It isn’t a routine yet. It does take awhile so you have to make the effort.”

Another challenge (and which many of us still struggle with) is the ever-present Diabetes Scorecard.

“One of our biggest downfalls was we ’scorecarded’,” my dad said. “We FAILED. You were 220, my God, what did we do wrong? And these days, you know, ’stuff happens, we’ll do better next time.’ You cannot beat yourself down, or the team, or the diabetic, for what is clearly a short term aberration. And for children, good numbers are darn near impossible day in and day out.” Emotions can run very deep with diabetes, which is why it’s important, especially in the beginning, not to get in the habit of judging how good or bad you are as a parent or a patient by what your blood glucose numbers are.

One thing I always appreciated my parents doing for me was letting me still be a kid! I participated in all my Girl Scout activities, I went on school field trips, I even went on sleep-overs with my best friends.

Mom says, “Don’t shelter your children. Don’t be a helicopter parent. It doesn’t help the helicopter children, and you’re not going to be there to protect them for every minute. You have to let your kid be part of the team. You have to empower your kid.”

Mom also emphasized personal diabetes education: “You have to educate yourself on what diabetes is because you will come across doctors and nurses who don’t know anything about it. You have to be your child’s advocate. If you don’t know enough about it, you won’t know if you’re being given misinformation. You have to become a doctor, scientist, dietitian. You have to start wearing all these hats.” It’s also important to keep a thick skin around people who aren’t as educated as you are.

“Don’t take what other people say to heart. Because people are going to say insensitive things unbeknownst to them,” Mom added.

Best tip of the conversation? Keep a positive attitude. Everyday is different, but, as my dad says, “You do your best but results may vary.” (I think my dad and Bennett would get along…)

I also recommend a solid support network, whether that’s in the shape of camp, support groups, Children with Diabetes conference, meet-ups or whatever. There is nothing more valuable, in my opinion, than the experience of someone else and the familiar sight of an insulin pump or a glucose meter. Some of my best friends are people with diabetes, and they are a constant, yet in some cases subtle, reminder that I’m not alone, that I’m not the only one who feels sick or frustrated or blah about the whole diabetes thing.

Diabetes does not make your child (or you) breakable, my dad reminded me. They have to be normal. So many parents I know worry about their child’s happiness, their success in life, college, work, relationships. I can confidently say that your child will be great. Not just fine. Great.

Don’t let diabetes defeat you.

Curious about what’s happening in the diabetes industry and research community? Or maybe (like me) you think that you already know what’s going on… Well, get ready for a concise and extremely entertaining exposé of the current status of diabetes care and research towards a cure.

The title is Diabetes Rising, the new “epic book” coming out in January 2010 by award-winning investigative journalist Dan Hurley, a type 1 diabetic himself.  As the publicist explains:

“Through interviews with hundreds of doctors and patients, Diabetes Rising addresses some of the myths that seem to have stunted progress towards a cure for both Type 1 and Type 2 diabetes. Debunking these myths, Dan continues on to present a surprising collection of scientific theories that explain why rates of both types of diabetes are mounting” — despite the onslaught of new drugs and therapies.

I received an advance review copy about 10 days ago, and simply could not put it down.

The book is divided into three no-nonsense sections: The Rising (history of diabetes), The Reasons (hypotheses for what causes diabetes), and The Remedies (four theories that might lead to a cure).

What makes it so readable is Dan’s affable writing style; as you’re reading about deep science, you find yourself chuckling over the personal quirks and even the hairstyles of the many top researchers he’s interviewed.

Letting the cat out of the bag a bit here: From Dan’s “Reasons” section, did you know that in addition to the hygiene hypothesis, there are four other very plausible scientific theories on what makes people develop diabetes?

- the Accelerator Hypothesis, the notion that because people are growing taller and bigger much faster than ever before in history, this may be putting greater demands on the pancreas, and “stressing” the immune system

- the Cow’s Milk Hypothesis, which asserts that giving babies cow’s-milk-based foods too early in life is what wreaks havoc on the immune system

- the POP (Persistent Organic Pollutants) Hypothesis, which assumes that manmade environmental toxins may be the cause

- the Sunshine Hypothesis, which states that people living in less sunny places get more diabetes, and we all should be taking Vitamin D supplements

In addition, this book clearly explains the details (and strengths and weaknesses) of each. But the section that really had me riveted was of course “The Remedies,” looking at possible avenues for a cure:

- The Computer Cure, all about artificial pancreas research. Dan himself was in a clinical study organized by the JDRF. (“For 15 hours, I was no longer diabetic,” he writes, and laments that the FDA is dragging its feet on approving a simple but key feature: automatic shut-off for a combined glucose-insulin system that detects a low.)

- The Surgical Cure, about the face-off between endos and surgeons over bariatric surgery as a “cure” for Type 2 diabetes. (“By golly, it works,” he writes.)

- The Biological Cure, about the search for a pill that cures Type 1 diabetes, including the best description I’ve read of teplizumab, which seems to stop the immune system attack on insulin-producing beta cells — in mice.

- The Public Health Cure, or the notion that “prevention is the ultimate key to ending the diabetes pandemic”: attack on the fast food industry, encouraging people to take the stairs instead of the elevator, etc.

Aaron Kowaslki of the JDRF plays a starring role in the sections on technology (go, Aaron!)  And even our own D-blogger friend Kelly Kunik is mentioned in this book with respect to the OC’s acerbic reaction to Halle Berry’s misleading public statements.

It truly is “an amazing new epic book on diabetes…” The best I’ve read since Jim Hirsch’s Cheating Destiny. Only Hurley comes to a much more controversial conclusion:

“While the American Diabetes Association can and does support public health campaigns and legislation, the focus of its monthly magazine, like the focus of virtually all medical efforts to improve the lot of people with diabetes, is self-management. Here’s a new meter; now test your sugars. Here’s a new recipe; now count your carbs. And who can argue with the view that people must take control of their diabetes? No one. I’ts a given that people with diabetes must be their own primary caregiver.”

“But it’s just as clear … that focusing on personal responsibility alone has not stopped, and will never stop, the rise of diabetes. Something more is needed; recognition that forces beyond the individual’s control are at play, and that united action is necessary to face down what is a public, and therefore political, danger to our well-being, and to the well-being of our children.”

Amen.

{Kaplan Publishing, January 2010, available for pre-order on Amazon.}

* Stay tuned for an exclusive interview with author Dan Hurley here next week! *

It’s been three years since I posted anything detailed about living with gluten intolerance. Yes, it still plagues me. It makes everything complicated. I hate it. I know plenty of others out there feel the same. In case you missed this three years ago, please read:

Greetings, Diabetic Celiacs

Somehow the word has spread accross the Web that I am not only diabetic, but gluten-intolerant as well. I’ve noticed that a number of my online gluten-free friends (see new list in left-hand column, below) have linked back to me, as some kind of resource, I suppose. What can I actually offer on this topic?

For those of you unfamiliar with this disorder, let me start by explaining that it is, in many ways, harder than being diabetic! OK, no injections required. No ketones or hypo incidents or anything of the sort. But if you are *just* diabetic, you can still eat a sandwich. You can still eat a bagel. You can still go out in the world and order “real” food without getting sick.  I have already forgotten what normal bread tastes like. (Note that the leading celiac magazine is called “Living Without” — for good reason.)

And once again, it was only through the Internet that I learned of the relationship between Type 1 diabetes and gluten-intolerance. Not one of my @#%$! doctors said a thing about it. So following my diabetes diagnosis, it took over six months to figure out what else was wrong with me. Aaacckk! Come to think of it, the best I can do would be to help others avoid this extended learning curve.

So on that note, here are a few “top tips” on gluten intolerance from my little corner of the world:

* TRY THIS:

- If you are experiencing sharp abdominal pain, cramps, chronic diahrrea, or persistent itchy skin rash, visit an allergy specialist (not your regular doctor!) to have blood tests for possible allergens

- If you are told there’s a 50% chance you may be allergic to wheat, do not hesitate! Try a gluten-free diet immediately, for at least 2 weeks, to see if your symptoms dissipate

- If you are still unsure and suspect celiac, ask your doctor to order the autoantibody test to be sure (a “small bowel biopsy” that can be rather unpleasant, unfortunately)

* VISIT THESE SITES:

- National Institute of Health/Digestive Diseases
- Celiac.com
- Celiac Chicks
- Gluten-Free Girl
- Recipes from a Gluten-Free Goddess

(Men welcome at all these sites, too, of course )

* SHOP HERE:

- Gluten-Free Mall
- The Gluten-Free Pantry
- Gluten-Free Trading Company
- Gluten-Free Meals.com (delivered to your door!)

Expect to pay MORE for these special foods. But expect to FEEL BETTER and like it! (See the photo of me, in Palm Springs last week, feeling pretty darn good even after explaining to umpteen smiling servers that I really can’t eat that, because I am in fact, allergic to wheat!)

Finally, need to find a real-life gluten-free friend? Try Celiac Meetups to search for people with celiac disease near you. Nothing like a real-life buddy who shares your disorder to make you feel more “normal,” right?

Best wishes to all of you celiac diabetics!

How many insulins have you tried?  If you’re like most people, you only switch to something new when a better generation comes out, such as when Regular upgraded to Humalog or when NPH upgraded to Lantus. But when it comes to comparing insulin in the same family, say Humalog versus Novolog or Lantus versus Levemir, most of us only try something new when something goes very wrong, such as burning at the injection site. Yech…

But what really differentiates them anyway?  On the outside, there aren’t many distinct differences between Humalog, Novolog and Apidra. They are all rapid-acting insulin designed to enhance upon the classic Regular. They have a quick onset (between 10 and 15 minutes) and are generally are out of your system in a couple of hours. But if you ask an individual, “Which insulin do you use?” you’ll get a variety of answers and a variety of reasons.

When Apidra came to market in 2004, it claimed the title of speed champion.  While Humalog was fast, and Novolog was faster, Apidra was the fastest, according to manufacturer Sanofi-Aventis.  Actually, there is no scientific evidence that there are any major difference between the different brands of rapid-acting insulin.  “I have seen zero reliable research (ie, not conducted by an insulin company) showing any difference in action times,” says expert John Walsh, PA, CDE, and author of Pumping Insulin.  But many people — including many Apidra users like myself! —  still claim otherwise.

We surveyed the folks at TuDiabetes to get their impressions of how the different insulins have affected their blood sugar, and several people responded with interesting feedback about the new kid on the block, Apidra.

Linzie, a type 1, switched to Apidra when she went on her insulin pump. “Apidra works really quick compared to the Novolog I was taking,” she says, “and it seems to be out of my system faster.”

Heidi agrees, saying, “I use Apidra and have since I began pumping 9 months ago. Before going on the pump, I was on MDIs and using Humalog and Lantus for years. I think Apidra is most effective; it takes about as long as Humalog to begin working (~15-20min) but has a much shorter duration, so it brings down highs quickly and has a lesser risk of hypos. I haven’t experienced any side effects or a major change in bolus dosing.”

Melissa tried Apidra after her endo gave her some free samples. “She wanted feedback from patients currently pumping with Humalog,” Melissa says. “She thought its more rapid peak onset would be better for me because I had a tendency to bolus post-meal, which I eventually learned to stop doing!”

Others who responded indicated that they’d been on the same insulin for so long, they weren’t ever able to compare it with any older versions, or newer alternatives.  Or, as Stacey expressed it: “I didn’t really ‘choose’ to use them, it was just what my endo prescribed.”

Which begs the question, if we’re so obsessed with finding the perfect insulin pump (and rightly so), shouldn’t we be at least as interested in what type of insulin goes into it and whether or not what we’re using is the best for us? As Bennett says, your diabetes may vary, so it’s a wonder why most of us are satisfied with whatever insulin our doctor handed over, often years earlier.

Have you test-driven any other insulins besides the one you’re using now? What were the results? Did you stick with the new type or go back? Inquiring minds would like to know…

Of all the things I heard at the Transform symposium at the Mayo Clinic last week, there was just one notion that pierced the heart of all this healthcare reform talk, if you ask me. It was the statement by Christi Dining Zuber, Innovation Director at Kaiser Permanente, that healthcare needs to be about compassion rather than “compliance.”

The traditional notion of a doctor’s role was: “you tell people to do stuff, you push them to do it, and then you track it.” Funny that when large numbers of people failed to perform the “stuff,” no one seems to have thought about critiquing the methods. Rather, experts just assumed that patients were too lazy or stubborn to follow orders.

But thank the Lord that seems to be changing for real, finally.

“Health care is humans giving care to other human beings,” Zuber said. “It has to be about compassion, an appeal to the heart.”

I wonder how many of us have had a compassionate encounter with a healthcare provider? Far more common are the horror stories of patronization and blame. Even I could tell you a dozen or more stories of being belittled by a doctor or nurse, and I’m a pretty pushy lady.

The reason I’m encouraged is that Zuber wasn’t the only one bashing the “compliance” terminology. I’ve been to numerous health conferences in the past months, and one after another, experts — including MDs, health plan executives, and health policymakers — take the stage and talk about “motivating behavior change” and “working with patients as partners.” Just buzzwords? Hopefully not.  At least talking about it is a good start.

That brings me to two things about the power of talking:

First: The night before my presentation, I went to dinner with a small group of attendees. Somehow we got on the subject of my diagnosis, and I ended up recounting all the gory details of near-starvation weight, blurry vision, dehydration, IVs, insulin overdoses, etc., etc. I could see that these folks were visibly shaken. Wow! what a story… you poor thing! But soon they snapped back into “professional mode,” lamenting that patients don’t follow this or that regime properly. And all I could think was: Do you think I’m the only one with a story like that?! Every patient has been through his or her own little corner of hell. Why can’t you connect those life experiences with our “openness” or ability to perform some pretty unpleasant health tasks day in and day out, for the rest of our lives?

Second: The conference wrap-up was delivered by a brilliant woman named Maggie Breslin, Senior Designer at Mayo’s SPARC research group.  After years of studying every imaginable sort of patient interaction in this million-square-foot clinic, what do you think her conclusion is about what good healthcare looks like?

The answer: A satisfying conversation!

“Conversation is how people determine quality and value,” she says. “People love the Mayo Clinic not because of all their state-of-the-art treatments and procedures, but because doctors take the time to talk and answer all patients’ questions.”

Her other conclusions, which seem so intuitive for us patients desperate for a good talk:

- Conversation has therapeutic value. Providers help patients just by talking with them.

- Conversation allows us to deal with ambiguity. It clears up all that confusing science and medical jargon, so we can understand our health issues.

- Conversation is not just a “nice to have”; it’s the essential element of healthcare. Without it, you have nothing.

I couldn’t agree more. So who out there is actually getting Compassion and Conversation from their doctor or CDE when they need it most?