Yesterday’s torture was my annual eye retinopathy exam to see if diabetes had wrought any damage. My doctor, who also has diabetes, has long preached the wisdom of an extremely low-carb diet, so each time I see him my mind starts clicking into how many carbs I’ve eaten since I last saw him. My head filled with visions of the occasional cookie or bite of butter-pecan swirl ice cream, I tried to calm myself as he examined my dilated eyes. He is a very thorough doctor, which meant that I had plenty of time to imagine the worse — that despite my mostly good diet and exercise plan — something had gone very wrong.  While he hemmed and hawed I could hear him calling me into his office to explain that despite my best efforts and a 5.8 a1c, my eyes were going downhill.

“Mrs. Rush?” he called.

I blinked and looked in his direction.

“Everything is fine,” he said. “You’re good to go.”

I looked up. “Are you sure?” I asked.

He smiled and nodded, as if he knew precisely how I had spent the past seven minutes, coiled in my own anxieties.

The truth is I wasn’t going to write about my experiment with metformin until after I got another A1c, as an official confirmation of success. But yesterday when I woke up, at 4:30 a.m. to go running and tested my blood sugar, I changed my mind. My blood sugar was a perfect 100. And this morning when I woke up early again it was 90.  I’m so happy about this that I can’t resist sharing.

I’ve had type 1 diabetes for ten years and for most of those years I’ve struggled with morning highs (dawn phenomenon), waking up with blood glucose levels of anywhere between 120 to 200 usually over 150. Although this has been convenient as far as running is concerned, I know this is far from healthy and have tried to solve the problem with the help of doctors.

Doctors have suggested many things, from changing the kind of basal insulin I use and adjusting the amounts, to injecting into larger muscles. But no one has ever suggested I take metformin to help control my blood sugar levels.

Most doctors it seems, like most people, don’t like to think outside the box or try something different, at least until they have no choice. I don’t mean to criticize doctors in general, but many times it seems as if it’s not me they see, but my disease.  That means that rather than tweaking my treatment according to my needs, and making it individual, they prescribe the standard type 1 drug regimen. Metformin belongs to type 2 diabetes treatments, so it seems to not even register in doctors’ minds as a possible treatment for type 1 diabetes.

One of the great things about this age of information is that as patients we have the opportunity to take control of our health care more than ever before. I got the idea to try metformin through my own research, after reading about how metformin reduces insulin resistance and decreases the production of sugar by the liver. It also seems to reduce LDL cholesterol (another problem I suffer from thanks to my liver) and protect against various cancers.

After reading, I decided to ask for metformin at my next  doctor’s visit. I didn’t actually think my doctor would go for it (since doctors don’t always like patient power). I rehearsed suggesting it in my mind, trying to figure out a way that would sound polite and respectful, but when the moment came I just said, “Can I try metformin?”. The doctors initial reaction was “Metformin is for type 2 diabetes.”  She repeated that a few times which made me think there was no way she would give it to me, but I was wrong. She actually thought it was a good idea and told me it could help with my morning highs.

When giving me the prescription the doctor told me it would take a couple of weeks to start seeing results. She also told me to take a half a pill (425mg) for the first two weeks to make sure I didn’t suffer from any side effects. Luckily, I didn’t and after those two weeks I upped the dose to a full pill, which I take every night before I go to bed.

For the first 2 weeks I didn’t see any results but a few days after I started the full dose (850mg) I noticed an improvement in my morning BG numbers.

I know it’s too early to really make a judgment and most probably after I write this post my morning blood glucose levels will go totally out of control, but it feels as if there has been a change in my body. I go to sleep at the same levels I usually do, after eating the same food I usually do, and wake up lower than usual, but not too low.

I don’t know if the metformin is making a difference in any other way, too – insulin sensitivity or cholesterol, but it seems to have made a huge difference in morning numbers. I hope this continues.

The only problem now is that I need to rethink my mornings and figure out a way to start my runs with higher blood sugar. Maybe I’ll have an energy gel with my coffee.

The FDA decision was based on data that showed that Levemir is an equally efficacious treatment option for two- to five-year-old children with type 1 diabetes, compared with Neutral Protamine Hagedorn (NPH) insulin. Mean HbA1c was similar between groups. According to 2012 American Diabetes Association guidelines, it is recommended that children younger than age six have an A1c goal of less than 8.5 percent. 

Each year, more than 13,000 young people are diagnosed with type 1 diabetes. The youngest of these children with type 1 diabetes have the greatest likelihood of severe hypoglycemia and the highest risk of acute diabetes complications. 

This pre-specified and stratified subgroup data showed that children with type 1 diabetes from ages two to five who received Levemir plus a rapid acting insulin analog, NovoLog (insulin aspart [rDNA origin] injection), experienced a low rate of hypoglycemia compared with those taking NPH and NovoLog (24-hour: 50.6 vs. 78.3 episodes per patient year). No patients treated with Levemir had a severe hypoglycemic episode, whereas there were six reported episodes in three patients treated with NPH.

In September 2011, the European Committee for Medicinal Products for Human Use (CHMP) similarly adopted a positive opinion on the extended use of Levemir in children ages two to five years with type 1 diabetes.

While it’s annoying to have the ABC song stuck in your head, sometimes it helps me stay calm to just repeat the same thing over and over again.  Unless, of course, the thing I’m repeating to myself is that my A1c will be 15% and the nurse will stick me with a dirty needle.

So here’s the real deal: I’m afraid of the lab.  The whole entire place. I have contamination issues. I have germaphobic tendencies.  All the pricking, poking, peeing, and swabbing going on… the 24-hour urine jugs, cups of fecal matter… the nose blowing, coughing, eye rubbing… what I need is a hazmat suit to wear to the lab.  Today’s special treat was a woman who removed her shoe and placed her dirty bare foot on the edge of the check-in counter – like she was practicing yoga. 

Lab yoga, there’s a way to calm yourself before a blood test.  But I don’t do any sort of yoga, so I’m left with singing to myself to stay calm.  I did okay this time. A1c, D, E, F, G…  My previous lab visit was four months ago and I was a wreck.  My fasting blood glucose on that day was 117, higher than it normally is, especially given that I walked to the lab, which should have lowered my blood glucose.  But since stress  raises blood glucose, I guess the two sort of cancelled each other out.     My A1c result on that day, however, was fantastic.  It was the best A1c result I’ve had since my diabetes diagnosis.  5.3%.  (Remember that I have LADA, so I still have more insulin production than most type 1 diabetics, which means it’s easier for me to see a number like 5.3% than it is for most.)

I had not expected such a good A1c result.  It came a few months after I stopped nursing Adam, and nursing had been helping me keep my blood glucose numbers down.  I could always nurse instead of blousing.  I just assumed that without nursing, my numbers would be higher, no matter what.  But there was something else I forgot to factor into the equation.  Without nursing, I would need fewer calories.  Without nursing, I would be much less hungry.  I also saw a reduction in my carb cravings.  In fact, I rarely crave them at all anymore.  

A low-carb diet used to be an effort.  Now, it doesn’t feel like a special diet.  It’s part of life.  It’s fine.  I still have a bite of something with carbs here and there, but overall I’m not tempted, I don’t feel like I’m giving anything up, and low-carbing is not really an issue.  I love that.  I love it as much as I hate the lab.  

Since eating low-carb has been so easy for me recently, I’m expecting to see the effects of my diet in my A1c result.  But… I have LADA.  LADA gets progressively worse until it’s not any different than type 1 diabetes.  So that, too, may be reflected in my A1c result. 

The result should be in tomorrow.  I’m guessing 5.6%. Meanwhile, I have the rest of the day to stress about my A1c, my liver enzymes, my potentially misbehaving hormones.  I’m anxious, impatient, I don’t like suspense, and I really, really, really, really, really want to be healthy. 

Banting, right, and Best, left, with one of the diabetic dogs used in experiments with insulin. Credits: University of Toronto Archives

I’m on the edge of my seat as I type this post.  There’s no idiom intended in the preceding sentence.  I am actually sitting on the edge of my seat because my black cat is taking up most of the chair.  I could push her off, I know, but as uncomfortable as she’s making me, I like having her here nudging at my back with her velvety little nose.  My gray cat is on the desk, just to my right.  A few feet away my 120 pound dog is snoring.  

I have always been an animal lover.  I was born into a home with a dog named George.  As a young child, I dreamed of having a horse.  When I finally accepted that my father was never going to bring a pet horse into our three bedroom suburban home and let me ride it to school, my passion spilled over into the world of cats.  I was seven-years-old, in an exceedingly miserable family situation, and I wanted a cat.  I needed a cat.  I had a therapist at the time, and she understood this.  For my eighth birthday my father gave her permission to take me to a pet store to buy a cat.  I don’t recall what sort of selection of cats there was in the pet store.  I went straight for the cross-eyed white cat.  I named her Snow.

Despite her chronic diarrhea, Snow was a lovely cat.  Shortly after I got Snow my brother wanted a cat, too.  He got an orange tabby and we named him Ricky, after Ricky Schroder.  Ricky got diabetes and required insulin injections, but that story is for another post.  Today’s post is about the very first diabetic being to survive with insulin injections, Marjorie the dog.

I don’t know very much about Marjorie, only that she and other dogs were crucial in Frederick Banting’s and Charles Best’s experiments which led to the discovery of  insulin. And apparently, after having her pancreas removed, Marjorie lived for 70 days with insulin injections. I haven’t done a lot of research on this subject, partly because I just started to think about this yesterday, and partly because I don’t want to know too much about any animal suffering. 

Here is an excerpt from an article in Harvard Magazine that begins with Marjorie’s story:

“During the first week in the laboratory, Banting and his assistant, Charles Best, operated on 10 dogs; all 10 died. Finally, in 1921, after months of experimentation, Banting and his colleagues isolated a material that kept a depancreatized dog named Marjorie alive for about 70 days. Exactly what information was gained from using dogs, and how many dogs were absolutely needed, is not clear. Work previous to Banting and Best’s, some of it in humans, had indicated the presence and importance of a hormone involved in glucose transport. Many more experienced scientists in the diabetes-research community believed that Marjorie had never been fully depancreatized, and thus may have never been diabetic. More likely, they said, the dog died of infection caused by her pancreatectomy. It’s possible that even the death of the famous Marjorie was unnecessary for the great discovery.

But the two Toronto researchers had isolated insulin, providing the first step toward producing it from pig and cow pancreas, available in bulk from slaughterhouses. The result–that Banting and Best “saw insulin”–appears to have justified all sacrifices. What’s the life of a dog, 10 dogs, a hundred? Before Banting and Best operated on dogs, we had no insulin; afterwards, we did.”

Glucoteether

 Introducing the glucoteether…

I’ve written before about the impact that diabetes has had on the way I think about food – and that’s a huge aspect of life with diabetes that people don’t really get and which I’d like to share. But that’s just part of something much larger that few people not directly connected to the disease truly understand: the emotional aspects of diabetes. The constant calculating, and estimating, and judgment, and sense of failure when, inevitably, your blood sugars rebel. In other words, the part of diabetes that is invisible, the part that torments you every time you take a bite of food, or feel a familiar trembling, or tuck your diabetic child into bed, or see an unwanted number on your glucometer’s screen.

So many times people react to the visible parts of diabetes — the shots, the finger pricks, the pump tubing. They try to be empathetic.  ”Doesn’t that hurt?” they ask. “How many times a day do you have to prick yourself?” 

Before I had diabetes, that would have been my reaction, too — no one likes injections, and the visible parts of diabetes are, after all, unpleasant. But now that I actually have it myself, I don’t care about those superficial aspects. I don’t care about giving myself shots. I don’t care about finger sticks. What I care about is the uncertainty. The inconsistency.  The discipline. The self-hatred. The frustration of never, ever being able to get things totally right.

That, I think, is what I’d most like to communicate to people. That insulin is not a cure; it is a management technique, and a very imperfect one at that. That injections are nothing compared to emotions.  That I would gladly prick my fingers a dozen more times a day, give myself a hundred more shots, if there were any medication that could relieve the constant mental burden of living with this disease. 

So this is what I wish I could tell the world about diabetes: sticking yourself is not the hard part. It’s the emotional toll that hurts the most. 

Two of my favorite foods are pizza and cauliflower, so I could I not love this recipe for cauliflower pizza crust?  Cauliflower pizza crust is low carb, full of flavor, and can hold its own against a classic pizza crust recipe.  We’re very happy to share this recipe of you, courtesy of Danielle from Against All Grain.  Check out Against All Grain for topping ideas: Spinach, Butternut Squash and Pesto Pizza and Meat Lover’s Pizza.  

Ingredients:
1/2 head cauliflower, about 2 cups grated
1/2 cup + 2 tablespoons freshly grated Parmesan cheese
1 garlic clove, crushed
1/4 teaspoon sea salt
1/2 tablespoon fresh basil, chopped
1 egg
2 tablespoons coconut flour
1 tablespoon virgin olive oil, for brushing the tops
1/2 teaspoon garlic salt, for sprinkling on top

Preparation:

Preheat your oven to 450 degrees.

Trim the cauliflower and remove the stems. Place in your food processor and pulse until the florets are finely “riced.” You can also grate the cauliflower with a cheese grater.

Place in a steamer placed over an inch or two of water, and steam until just tender but not fully cooked. Don’t let the cauliflower touch the water, it will absorb too much of the water and make a soggy crust.

Combine the cauliflower, cheese, garlic, salt, basil, egg, and coconut flour in a bowl. Mix until combined.

Form two 8 inch circles with the dough on a piece of parchment paper. The “dough” will be pretty loose until it is cooked, so use your hands to form it into a circle and lightly press with your palms until it is 1/2 inch thick. Brush with olive oil and sprinkle with garlic salt.

Bake at 450 degrees for 15 minutes, or until slightly browned around the edges.

Let the crust cool slightly, then add the toppings and place under the broiler for 5-6 minutes until the cheese is melted.

*Photo courtesy of  Against All Grain

It’s Diabetes Blog Week Day 5.  Today’s topic is: “What is one thing you would tell someone who doesn’t have diabetes about living with diabetes?”

There are so many things I would like to tell people without diabetes about life with diabetes: Insulin is a not a cure for diabetes. Insulin is not just taking a shot and being fine. Diabetes in any form can only be treated, not reversed or cured. Hypoglycemia pulls you out of your being into a realm that’s like a nightmare, where you shake and sweat, feel confused and don’t recognize yourself. And there is no guarantee the nightmare will end with you alive. Living with type 1 diabetes means you constantly think about it, not in abstract way, but minute to minute…

Could someone who does not have type 1 diabetes or who is not a parent of a child with diabetes understand that?  Can one really imagine what it’s like to role play as a critical organ?

While it may not be possible for the world to understand what it’s like to live with type 1 diabetes, everyone should be educated about its symptoms and the symptoms of hypoglycemia. Just as nearly all parents know that fever and spots are signs of chicken pox, they should know that thirst and weight loss are signs of type 1 diabetes. Teachers should know that the child who constantly needs to go to the bathroom might have undiagnosed diabetes. In my school health classes we learned (poorly) what to do in certain emergency situations. Hypoglycemia was never mentioned.  Why not?  

I spend a lot time dreaming up ways to get this information to the masses. I have a lot of ideas I hope to be able to implement. But if I had to choose one thing to tell the world about diabetes it would be, “I can’t.”

I can’t eat without an injection of insulin. 

I can’t go to sleep without worrying that I won’t wake up.

I can’t leave home without a glucose meter, insulin, and some form of sugar.

I can’t sleep through the night because I need to check my blood sugar.

I can’t accurately mimic a pancreas.

I can’t prevent my children from getting diabetes.

I can’t ever rest.

I can’t eat a single bite of food peacefully until there’s a cure for diabetes.

I’ve written about this before and I hope that you understand I’m not being antagonistic. I do believe that with people with diabetes can do anything they want (with great effort).  My suggestion is to put our pride aside and approach diabetes advocacy from a different angle.  It’s not that we shouldn’t be proud.   We should be  so proud.  We work hard to keep ourselves alive.  How will the world understand just how hard it is, though, and understand how badly we need a cure for diabetes, a vaccine to prevent diabetes, and in the meantime, an artificial pancreas, if we continue to insist we are the same as everyone else?

Since the discovery of insulin 90 years ago, people with diabetes have been treading water. If you prove you can tread indefinitely and no one thinks you’re about to sink, why will anyone help?

(Note to parents of children with diabetes.  I am not suggesting you should tell your children they can’t do things.  I’m trying to think of new ways to call attention to the needs of people with diabetes.  I’m on your side. 100%.)

Even with Silicon Valley recently jumping on the “wellness bandwagon,” pumping out new mobile health apps at the rate of an automatic tennis ball launcher, these are typically designed by technophiles, engineers more focused on a gadget’s operating system than any meaningful outcomes for patients who will use them.

But there’s a movement afoot: the rise of patient voices to influence products related to them. Some of our voices are being sought by health care industry providers, some by patients themselves — particularly, a patient I happen to know, Amy Tenderich, who began stirring these waters several years ago with a famed letter to Steve Jobs.

Tenderich is founder of the news-rich diabetes blog DiabetesMine and has been on a mission to bring the patient’s voice to designing the medical devices we use. Her voice just grew louder with the DiabetesMine Patient Voices Contest.

Diagnosed with Type 1 diabetes in her 30s, Tenderich has made it her personal mission to spur innovation that actually originates with patients. After her letter to Jobs, she launched an online contest called the DiabetesMine Design Challenge, calling for any and all new product ideas that could improve life with diabetes. (The contest was underwritten by the California HealthCare Foundation, and supported by IDEO, a leading design firm with close ties to Stanford University.)

The initiative went viral, developing into an international crowdsourcing competition that has awarded more than $50,000 in prize money.

While competitions asking for the public’s wants, needs and votes are now en vogue, particularly regarding diabetes, Tenderich responds that, “patient-centered design remains far more a marketing buzzword than a real process.”

So this year she and her team launched the DiabetesMine Patient Voices Contest focused on gathering user needs. People living with any type of diabetes, and caregivers, can submit a two- to three-minute video expressing the biggest challenges they live with, what they like and don’t like about current diabetes tools and what they want from their diabetes devices.

Ten winners will receive full scholarships to take part in the DiabetesMine Innovation Summit at Stanford campus this November — a gathering of stakeholders involved in creating tools for living with diabetes that Tenderich kicked off last year. There, informed patient advocates will mix with device designers, Pharma Marketing and R&D, web visionaries, experts from venture capital investment and innovation, regulatory experts, mobile health experts and others involved in creating “solutions” for people with diabetes.

Winners will also receive the new iBGStar glucose meter from Sanofi, a lead sponsor of “Patient Voices.” The iBGStar is the first blood glucose meter that plugs into your iPhone or iPod touch.

Tenderich says, “This product personifies our whole patient-led initiative. It’s about integrating the best and coolest consumer technologies with the medical technologies we depend on to live more comfortable and healthier lives with diabetes.”

I credit Tenderich for, on her own, starting a movement that’s increasingly getting patients’ needs and wants on pharma and medical device companies’ agendas, and moving them to follow with their own initiatives.

Sanofi now runs a design crowdsourcing challenge that pulls ideas from the public about what matters most living with diabetes to innovate in quality, delivery and the cost of diabetes care. I’ve been invited to Roche’s annual social media summit to exchange thoughts, ideas, needs and wants between patients and pharma, and I’ve been invited to Medtronic to see what they’re up to.

I am grateful for all these opportunities to cross the bridge and bring health care industry providers and patients closer together.

Now we need to keep our voices raised, for as Tenderich says, “No one knows better how gadgets, devices and apps can help patients than patients themselves.”

Go to DiabetesMine Patient Voices Contest to participate. Deadline for submissions is June 12, 2012.

Originally published on Huffington Post.