Readers Digest finds the cure! NOT!

Today the DOC (Diabetic Online Community) got together again to communicate en mass. This has happened countless times in the 13 months I've been an active member. In this case, Readers Digest, a publication I've been reading since I was a child (my Grandfather bought me a continuing subscription for years, so I have a real fondness for this publication) printed an article in which the front cover page claims that healthy eating habits and physical activity can reverse diabetes.

The issue is this. Most people know very little about diabetes. Most people don't know that there's more than one type, what causes diabetes, or how it's treated. If people know anything, they think that diabetes is caused by lifestyle choices; i.e. obesity and inactivity. This couldn't be more inaccurate (it's not even wholly accurate for type 2). Type 1 diabetes, which affects approximately 5% of people living with diabetes, is an autoimmune disease in which the immune system destroys the insulin producing cells in the pancreas. Guess what, you need insulin to live. You can't replace insulin with exercise or healthier eating. In fact, just to make the point...

If Sarah wants to eat a serving of peas, she requires a unit of insulin.

It doesn't matter if the innards of the article explain that the article refers to type 2, the damage is done. Most people don't read beyond the cover - and those of us who have children, friends, loved ones living with type 1 diabetes are incredibly tired of people telling us that we can "reverse" it. And now they have more fuel. I can hear it now, "didn't you read Readers Digest? All Sarah needs to do is eat better and be more active". And anybody who knows my child knows that she's about as active as they come. And except for a love of ice cream and chocolate, she eats better than pretty much any kid I've ever met.

So I would urge my friends and family to not be fooled by anyone claiming a cure for diabetes, type 1 or type 2, because while diet and exercise may "reverse" the high blood-sugars in some type 2 diabetics, it doesn't cure type 1. And, while I'm spouting off, may I say that I'm also angry on behalf of the type 2 diabetics who DO eat right, and DO exercise and STILL have high blood-sugars.

A little knowledge, a little research, and a little sensitivity go a long way... RD, please get with the program.

If anyone would like to contact Readers Digest directly, the email address is: letters@readersdigest.com


Here's my letter:
 
Dear Readers Digest,
 
I've been reading your publication for more than thirty years. My Grandfather bought me a subscription while I was in elementary school, and I loved it. Every year on my birthday he renewed, and I loved reading the articles, short stories, and funny quotes. My Grandfather had type 2 diabetes, as do many other members of my family.
 
In your May article, you boldly claim the ability to "Reverse Diabetes" through diet and exercise. While the article itself may clarify this, you know as well as anyone that many/most people read the front page and move on.
 
My daughter is a vivacious, energetic, beautiful, talented eleven year old girl living with type 1 diabetes. She wears an insulin pump 24-hours per day; it keeps her alive. She pokes herself to check her blood sugar up to 10 times each day - and yes, it does hurt her. She has to count every single carbohydrate she puts into her body, even those in healthy foods like peas, carrots, and soy beans.
 
The reason your cover page makes me angry is that there's a definite stigma to having diabetes. Most people don't know what type 1 diabetes is, and assume that all people with diabetes have it as a result of lifestyle choices. In our family, this couldn't be more untrue.
 
I implore you to make a bold correction to clarify this misinformation. Better yet, maybe next month's issue could focus on educating the public on the different types of diabetes, their causes, symptoms, and treatments.
 
Thank you,
 
Michelle Gonzalez

Five hundred twenty-five thousand six hundred minutes...

How do you measure... measure a year...

In test-strips, in blood-checks, in carb counts, and lots of coffee. In research... in doctors... in insulin vials...

It was March 18, 2010 when we learned Sarah has diabetes. What a year it has been, and I honestly can't say it's been a bad year. Challenging? Yes - but not bad. I am so amazingly proud of Sarah. She's such a trooper. Once she got home from the hospital she pretty much seemed to just accept the changes in her life. She just keeps moving forward without complaint. I think the fact that she's so busy probably helped a lot.

That said, I need to reiterate a few facts about diabetes.

• It's pretty much invisible - Sarah looks and acts just like any other child, except when her blood sugar is far out of whack. But that doesn't mean she doesn't have a serious disease that requires extreme and constant intervention in her bodily processes to keep her healthy.
• Keeping her blood sugar in check is a 24 hour per day process. She tests usually 7-10 times every single day, and we make constant adjustments to improve her control. Even then, it's not a perfect science and she has high and low blood sugars on a fairly regular basis.
• There's no "cure" (yet). She can't just eat right or exercise more. Even a handful of carrots or peas will throw her blood sugar into the 200's range if she doesn't take insulin with it.
• There are severe complications to worry about. Many type 1 diabetics do amazingly well, but this takes a LOT of effort. Too many more suffer severe complications including heart problems, kidney failure, loss of vision, nerve damage, stroke. In the last year I've met two parents of type 1 diabetics who died in their late 20's and mid 30's. My point isn't to scare anyone, but to remind that although you can't see the severity of diabetes, it's there.
• Children (and adults of all ages) die from type 1 diabetes. It's not common and it doesn't happen everyday - but it happens with enough regularity that it bears mentioning.
• Type 1 and type 2 diabetes are extremely serious conditions and need a cure. One in three people are at risk for developing diabetes in their lifetime. Someone in your family has, or will have, this disease if we don't find a cure.

That said, I am incredibly proud of Sarah for managing her diabetes so well and not letting it slow her down. Here's a brief synopsis of her very busy year:

March 18, 2010 - diagnosed on a Thursday. She was about 68 pounds at diagnosis, and had lost 5-10 pounds over the previous months. I took this picture of her about three weeks before she was diagnosed.

February 25, 2010

March 22 - back to school. The school nurse (who handles about 10 schools) had to visit Sarah's school every day to give her a shot before lunch. She also returned to theater practice today, learning her lines and her songs for Runaway Stage Productions Cinderella Kids. Within two weeks Sarah, who had been seriously needlephobic her whole life, was giving herself shots everyday at school.



May - Sarah performed wonderfully as Cinderella. Diabetes didn't slow her down at all. I packed lots of snacks, and checked her blood sugar during each intermission.

Sarah as Cinderella



The day after Cinderella ended, we flew to Ohio to a memorial for my grandfather. Sarah had a wonderful time and miraculously didn't have any serious blood sugar issues.

Sarah and cousin Simon, May 2010

From Ohio we traveled by train to spend a few days in Washington D.C. This was a little more challenging because we were forced to eat in restaurants. I believe we experienced our first "high" blood sugar, somewhere in the high 300's, while we were in D.C. At the time it was a "freak out" moment for me, but since then I've learned to roll with the occasional 300's. As long as we catch them quickly and provide the right amount of insulin, they are short lived.



Sarah and her grammy, resting their achy feet in D.C.

July, 2010 - When we got home, Sarah went straight into practice for her next show, Guys and Dolls - in which she was cast as a "hotbox girl" (third from left). She had a blast dancing up a storm.

September, 2010 - Following Guys and Dolls, she was cast as a homeless girl in Rent - School Edition. She did a great job and had a lot of fun in this challenging production.

October, 2010 - Sarah sang "Candle on the Water" at the American Diabetes Association's Sacramento walk to STOP diabetes.

November, 2010 - Following Rent - she went straight into Music Man, where she played both the part of the old woman in the American Gothic painting, and a teenage girl.

December, 2010 - Sarah sang 15 songs at a party put on by the U.C. Davis MIND Institute.

January, 2011 - Sarah played an Ancestor in Mulan.

March, 2011 - Sarah and I traveled to Washington D.C. to appeal to Congress to continue to fund diabetes research. We spent our last day there with Sarah's penpal, Megan (who also has type 1 diabetes). Both girls were ecstatically happy!

Sarah is currently working on Seussical, in which she plays the part of Yertle the Turtle.

So, as they say, life goes on. It's a different life than I wished for her. I try so hard not to smother her, but it's a constant challenge. I know that she can have a serious "low" blood sugar with very little warning, so everyday I walk a fine line between being available and ready if she needs me, and being too close.

Sarah is excited about growing into a more serious advocacy role. She wants the opportunity to help other kids newly diagnosed see that they can continue to be just as active and involved in life as before their diagnosis, with a few necessary changes to ensure continued health.

So here's to year one accomplishments. I am looking forward to watching Sarah grow and mature and use her powers to help others.

Sarah, you are my hero!

Reflections on our trip to Congress

Earlier this month, Sarah and I woke up ridiculously early on Tuesday and began a fantastic, whirlwind journey to Washington DC to bring our story to those whose job is to represent us. Sarah and I went to tell her story, a story about a little girl without a care in the world. A girl who loves to dance, and sing, and play boardgames. A little girl like so many who just love life, love living, and who inspire smiles wherever they go. A little girl who woke up a year ago and found that the world isn't fair, and that serious illnesses aren't only for the elderly. A little girl with type 1 diabetes.

Wednesday morning we woke early and spent some time preparing for our first meetings with the American Diabetes Association. Sarah was so excited! We ate breakfast in our hotelroom (bowls of cereal from the pharmacy down the street) and wandered the shops in the hotel until it was FINALLY time to check in with the American Diabetes Association. Sarah and I checked in and were provided with a t-shirt, a lanyard, and an over the shoulder bag stuffed with paperwork.

Sarah went right to work, opening the bag and previewing the contents.

In the afternoon, the real work began, and we found ourselves in a conference center full of men, women, and children of all ages, all races, all sizes. Many had diabetes, either type 1 or type 2, others were in the healthcare profession, and others were there to honor a loved one. The speakers were inspiring, and simultaneously heart-wrenching. One fact stuck out to me above all the others.

A focus group at the capital surveyed our lawmakers and found that overall they do not see diabetes as a serious issue.

I ask myself, how is this even possible? Diabetes, in its various forms, takes a tremendous toll on families. It's an immensely costly disease, requiring constant and ongoing medical treatment, and when complications arise, much more.

The thing about diabetes which is similarly wonderful and terrible, is its invisibility. I know, and have known, a lot of people with diabetes in my life - and until my own daughter was struck with diabetes, I have to admit, I didn't think it was that serious either. My grandpa had diabetes. He always had a meter on his table, I was told he took insulin (I don't remember ever seeing this), and candy and sugary drinks were always present. To me it seemed a small part of his daily life. Now I am consumed with learning and managing Sarah's diabetes. I even had a dream last night that she took her insulin pump off to take a shower, and then couldn't find it. Have you ever had a nightmare that locks your jaw, tightens your muscles, and ultimately wakes you from sheer terror? I felt that, over a missing insulin pump. How crazy is that?

But far beyond my own experience is the stone cold facts about diabetes. Over 26 million children and adults in the US have diabetes - about 5% of these have type 1 diabetes, like Sarah. The cost in 2007 to treat diabetes related complications in the U.S. was over $2 billion!

So we went to Capitol Hill. We talked met in Senators Diane Feinstein's, Barbara Boxer, and Dan Lungren's offices and told our story. Sarah told Diane Feinstein's aide how she was "afraid she was going to die" when she was diagnosed (pretty much ripping my heart out). We walked to several other offices and dropped off material, taking a few moments at each to tell our story and explain why we were there. Representative Tom McClintock heard me speaking to his chief of staff, and came out to introduce himself and give me a few moments of his time. He even brought us into his office for a few pictures.

Though the day was tremendously rainy, nothing could dampen our spirits. We were on a mission!

It was an amazing journey and we met so many wonderful people, including Marianne, who writes a blog called diabetties.org, which is dedicated to strong women dealing with the challenges of diabetes. What an amazing role model for my little girl!

In closing, this was a remarkable experience. Sarah and I both had a wonderful time, and an opportunity to share with our representatives the seriousness of diabetes. Sarah and I both came away energized and ready to begin preparing for further advocacy in California. We registered for the ADA's annual walk and Sarah is planning a variety of fundraising opportunities. Please visit our Step-Out page and donate generously, or better yet - come with us! We'd love to have you join our team.

Call to Congress - Getting our story to the press

Following is the press release prepared for our trip to Washington D.C. next week.

For Immediate Release:
Contact: Tonya M. Gonzalez
t1tightropetango@gmail.com

Pictured: Amanda (19), Sarah (11)

California Diabetes Advocates to Visit Washington, D.C. to Urge Greater Federal Funding in the Effort to Stop Diabetes®

Sacramento, CA, February 24, 2011

– In an effort to Stop Diabetes and the devastating effects of this disease in our community, Tonya Gonzalez and Sarah Gonzalez, diabetes advocacy leaders in Sacramento, CA, will join more than 200 diabetes advocates from across the country in Washington, D.C. for the American Diabetes Association’s Call to Congress. Call to Congress is the Association’s premier national advocacy effort and this year’s event will be held March 9 – March 11, 2011.

Attendees will include children and adults with type 1 and type 2 diabetes, family members of individuals with diabetes, researchers and other health care professionals. All are committed to advocacy efforts at the local, state, and national levels. Gonzalez is the mother of eleven year old Sarah. Sarah was diagnosed with type 1 diabetes in March 2010.

Gonzalez and the other advocates will meet with Members of Congress on March 10

th to urge them to support federal funding levels in Fiscal Year (FY) 2012 for diabetes research and prevention programs at the National Institutes of Health and the Centers for Disease Control and Prevention that recognize the magnitude of the nation’s diabetes epidemic. Of the nearly 26 million Americans living with diabetes, more than 2.3 million of them are residents of California. The advocates will also urge their Members of Congress to join the Congressional Diabetes Caucuses, which act to educate Members about diabetes and to support legislation that improves diabetes, research, education and treatment. While in Washington, DC, Gonzalez will also collaborate with other Call to Congress participants from around the country to plan diabetes advocacy efforts back home in their communities.

“Call to Congress brings Diabetes Advocates from across the country together in the movement to Stop Diabetes and provides them with the opportunity to tell our federal government how important it is to fight this deadly epidemic,” said John Griffin, Jr., the Chair of the Board of the American Diabetes Association. “The Centers for Disease Control and Prevention projects that one in three children born in the year 2000 will develop diabetes in their lifetime unless our country changes it course . Congress must provide the funding and leadership necessary to invest in research and ultimately save lives.”

Diabetes is a growing epidemic and is taking a devastating physical, emotional and financial toll on our country. The national price tag for diabetes is at an astounding $174 billion per year and that cost is estimated to almost triple in the next 25 years. Factoring in the additional costs of undiagnosed diabetes, prediabetes, and gestational diabetes brings the total diabetes-related cost to $218 billion.

For more information about Call to Congress, please visit

www.diabetes.org/CallToCongress.

About The American Diabetes Association

The American Diabetes Association is leading the fight to stop diabetes and its deadly consequences

The wedding

Last weekend was wonderful. My oldest child, and only boy, was married to his true love in a beautiful wedding in Washington. We all had an amazing time meeting the family of Devon's bride and preparing for the big day. The wedding was spectacular! The bride was the most gorgeous bride in the history of weddings, and my son was ever the handsome groom. My youngest, Sarah, sang beautifully during the ceremony.

As always, diabetes traveled with us, and provided a few challenges along the way. We made it to Washington on Friday morning only to open Sarah's diabetes kit (a small backpack) to find a can of apple juice had spilled. Everything was juiced, including the meter remote for her insulin pump. We ended up using a spare pump during the rest of the trip - which made things interesting as I had to reach under a full length dress several times during the wedding reception to check her pump and provide insulin.

We had an 11am appointment on Friday to get our fingers and toes beautified and have a chance to finally meet the bride's family in person. This started (and ended) wonderfully and we had a great time socializing with our new family. Sarah loved the massage chair she sat in for her pedicure.

During the manicure, diabetes decided to give us a little run for our money, because clearly it was WAY too much to ask to keep things simple. Sarah was doing great, keeping her wet toes still while a french manicure was applied to her fingers. Suddenly, and with no warning, she turned to me and began to wail that her stomach hurt. The wail was what got me, it wasn't anything like the sound Sarah usually makes when crying. I immediately directed her dad to check her bloodsugar and while he was in the process of poking her finger, she passed out - which pretty much gave us all a heart attack. Her auntie was right there with a tube of cake icing and began squeezing it into her mouth. I think she was probably out 10-20 seconds, but it seemed much longer. She began to wake, pale and sweaty, and auntie began shoveling cookies into her mouth to bring her blood sugar up. This was our first serious hypoglycemic event in the eleven months since she was diagnosed.

From left: Amanda, Michelle, Sarah, Ashley - Sarah is the picture of health only a few hours after passing out from hypoglycemia.

The rest of the weekend was wonderful. Sarah recovered almost immediately (carbs fix everything) and had a great afternoon and evening. We hosted the rehearsal dinner that evening and Sarah was quite the storyteller, doing her best to get her brother in as much trouble as possible with the new inlaws. Fortunately for Devon, Amanda (my 19 year old daughter) is the one with the best stories, but she held back. We also got to hear some great stories about our new daughter-in-law - including a real life "Get back on that horse!" story which still makes me giggle.

The wedding day came and I was a bit nervous. Sarah had a lot of responsibility. As a junior bridesmaid, she'd obviously walk down the aisle and stand during the ceremony. Additionally, she had to sing a song mid ceremony. We arrived at the church about two hours before the wedding so the photographer could take pictures. Uh oh. It's freezing outside and that's where the pictures are being taken - 1st potential bloodsugar nightmare, serious change in temperature, shivering, stress. So I poked Sarah about every fifteen minutes during the two hours before the wedding and kept having her take little bits of food to keep her sugar up. 15 minutes before the ceremony she was still only at 100, and I was very nervous about having a repeat performance of the manicure incident during the ceremony, so I forced her to eat a whole banana, hoping (for a change) for the crazy banana spike.

Amanda and Sarah in their beautiful bridesmaids dresses

The ceremony was amazing. My little boy married his love. And Sarah made it through without a hitch. She enjoyed a big cookie at the dessert reception, then danced the night away.

Dancing the night away

I had my first chance to dance with my handsome son, something I hadn't done since he was a little boy. It was amazing! And at the end we kissed the beautiful couple, then blew bubbles at them as they left the hall for the limo that would take them to the beginning of the rest of their lives together.

Ice cream before sleep means no counting sheep

When I was a teenager, I loved staying up all night watching Star Wars, writing the greatest novel (that's never been finished or published), reading, or talking on the phone (yeah, I totally had a spare phone I used to pull out when I got grounded and mom took one away. Sorry mom, too late to ground me now!!!). Three in the morning - ha! No problem... I was just getting started. I laughed at the newscaster who used to ask every night, "it's ten O'clock, do you know where your children are"? I didn't have children. I had books, movies, friends, and homework that always managed to get done on the bus ride to school.

Fast forward twenty-something years...

Where the heck did that carefree kid go? Oh yeah, she got all growed up and responsibilified. She has to get up at 6am and go to work, and she can't go to bed because she gave the child ice cream five hours ago.

Yes, if you've made it this far you have again entered the world of type 1 diabetes, a disease that affects about one of every 400 to 600 kids. A disease that somehow hasn't gotten a whole lot of attention. I wonder why this is? My best guess is that we parents do such a great job of managing this disease, that it doesn't seem like a big deal to the rest of the public. But as much as I hate to mention the serious downside of type 1 diabetes, I think it needs to be said. Type 1 diabetes is a deadly disease. Without intensive and constant treatment, the outcome is death. Until the advent of insulin in 1922, the average lifespan of a type 1 diabetic was about two years from diagnosis. Sadly, far too many type 1 diabetics still die young.

In fact, not long ago I met a woman in the waiting room for Sarah's Endocrinology appointment. She was there with her 10 year old granddaughter, who had type 1 diabetes. The woman was in tears. Why? Because she is now raising her diabetic granddaughter, because the little girl's mom died in her early 30's of complications from type 1 diabetes.

Yeah, it's that serious.

It's absolutely critical that Sarah stick to a strict regime of testing, counting carbohydrates, and delivering insulin. Here's what a typical Sarah day looks like:

6:30am - prick finger and test blood sugar - count the grams of carbohydrates in each part of her breakfast, enter the data into her insulin pump, confirm insulin injected, eat breakfast.

10:00am - repeat for snack

12:30pm - repeat for lunch

2:00pm - repeat for afternoon snack

5:00pm - repeat for dinner

7:00pm - prick finger and test blood sugar during/after activities - maybe have an evening snack

-- Every third day we load a new cartridge of insulin and use a really big needle to shoot a small tube into her tummy. Fun!

9:00pm - prick finger and test blood sugar before bedtime.

So let's see... According to this, my daughter pokes about 8 holes in her fingers each day. Might I remind you, she only has ten fingers, and 2-3 of them don't like to bleed, so we reuse the bleeders a lot.

And that brings me to the reason I'm writing this entry at 10:30pm instead of snoring. Tonight we splurged a little and let Sarah have ice cream for dessert around 5:30pm, knowing that ice cream always makes her blood sugar spike. I was actually kind of hoping that because we had dessert reasonably early, we'd get the spike out of the way before bedtime. But no... She tested at 9:00 and her blood sugar was 240. Her goal is 105-135, and I usually prefer her to be over 120 (but under 160) when she goes to bed.

So, because she was 240 Seymour ordered a correction (Seymour is the name of her pump - the name makes a lot more sense if you've watched Little Shop of Horrors) of 0.80 units of insulin. But before I can sleep, I need to confirm that:

1. Her blood sugar didn't plummet to the danger zone (hey, it happens!)
2. Her blood sugar didn't continue to rise (yep, this happens too!)
3. Her blood sugar is in the normal bedtime range 

I vote for door number 3!!! Who's with me?

So now I creep into her bedroom and turn on the light, hoping she doesn't wake. I insert a new test strip into her meter. I prime the lancing device, then dig under the covers for the nearest available finger. I gently squeeze the finger, bringing the blood to the surface. I push the lancing device against her finger and push the button, hoping I'll get enough blood so I don't have to do it all over again.

And the verdict is??? Dang it, door number 2. She's only down to 228. Seymour orders another correction, and now my 10:30 bedtime is pushed to 11:30.

Does anyone really wonder why I chug down so much coffee???

The quarterly report card

Tomorrow is Sarah's appointment in the Children's Specialties clinic at Kaiser. She'll see a nurse, doctor (Endocrinologist), nutritionist, child-life specialist, and a social worker. The whole appointment takes about three hours. They talk to us about diabetes management, read through her bloodsugar readings for the last three months - and give us the much anticipated A1C result.

The A1C is our report card. The A1C measures the amount of glucose that has built up in her red blood cells over about 90 days, so it gives us a fairly accurate view of her average bloodsugar.

A "normal" A1C is between 4.0-6.0 (though the Mayo clinic considers an A1C of 5.7 or higher pre-diabetes). Most diabetics aim for an A1C under 7.0, but this is not always easy to achieve. Sarah's last A1C was 6.5 - which is pretty good. But at the time she was having quite a few lows, so our goal this time was to keep the A1C under 7.0, while significantly reducing the number of lows she has.

Pre-game statistics

In the week prior to her last appointment (November 2):
4 - bg readings below 70
114 - Average bg
37 - Average carbohydrates in a meal

This past week:
0 - bg readings below 70 (her lowest was 77)
142 - Average bg
35 - Average carbohydrates in a meal

As you can see, Sarah hasn't had any serious low bloodsugars in the last week - this is a very good thing because low bloodsugar is dangerous. Her average is a little higher than I'd like to see, as her goal is 120. However, this number is somewhat inflated because it only takes into account the tests we perform, and I often have Sarah test an hour or so after a treat just to see where she's at and if she's going to need a correction. If I only tested at mealtimes, this would be lower.

Why do we care so much about her A1C? A good A1C significantly reduces the risk of future medical complications. "the Diabetes Control and Complications Trial (DCCT), ... found that for every one percentage point a patient reduces their A1C they lower their risk of microvascular complications 37%. The study also found that keeping blood sugar levels as close to normal as possible slowed the progression of diabetes-related eye, kidney, and nerve diseases."


So it's not just about keeping bloodsugar from becoming dangerously high or dangerously low. We strive to keep her bloodsugar as close to "normal" as possible. In a Type 1 diabetic, bloodsugar can swing wildly. A small snack, such as an apple juice or handful of crackers, can drive her bloodsugar up well over 100 points. Once I gave Sarah a bag of fishy crackers when her bloodsugar was around 70 - and an hour later she was near 250! Can you imagine? And she feels every swing in bloodsugar. She might feel shaky and sweaty at 60, and develop a bad headache over 250. So we walk a fine line, balancing carbohydrates and protein carefully to try to keep her bloodsugar as level as possible.

And every three months we walk into the Endocrinologists office and await our report card.

Edited on 2/2/2011 - The result? 6.5