Big Blue Test 2012

My daughter Emily and I headed to a neighborhood in Los Angeles near Silver Lake over the weekend. Judging by the garbage littering the streets, the graffiti covering so many walls, and the worn out homes and businesses, we immediately knew that this was not a place we would want to live. We had an address, but it took a couple of trips around the block before we spotted the nondescript warehouse squeezed between two buildings and behind a chain link fence.

We doubled parked in the tiny little lot in front of the building, and cautiously peeked in the door, where a whole different world greeted us.

Emily was diagnosed with Type 1 diabetes when she was only 20 months old. And whenever we get an opportunity to do something to help promote awareness or to help fund a cure, both of us jump at it.

So I received an email about the production of a video to promote the Big Blue Test, sponsored by the Diabetes Hands Foundation. An opportunity. We jumped.

The Big Blue Test encourages those with diabetes to test their blood sugars, exercise for 20 minutes, test again, and then submit their results and the experience to the website. For every participant, sponsors make a $5 donation to help those with diabetes around the world. And this video is going promote the program, which this year will run from October 14th through November 15th.

The warehouse was a whirlwind of activity. Two walls and the floor painted stark white. A pack of cheerleaders flipping through the air as a coach shouts out “5, 6, 7, 8.” A camera wheeling around for a different point of view. A director pumping his fist in the air, shouting “Yes!”

Emily sat nervously in her school volleyball uniform, hugging her volleyball, awaiting her turn. We watched a young drummer pound away on the drums, dancers float across the whiteness, Elliot Yamin (of American Idol fame who also has diabetes) sing, a razor and its rider skim past the camera. And then, a trampoline is carried onto the surface before the camera.

“Emily?”

Emily sailed through the air, spiking the volleyball while sailing about the trampoline while a camera rolled in close to capture the action. She looked great. Can’t wait to see the final cut – hope she makes it in.

But judging from the shoot, this is going to be a great video. The concept is beautiful. I am so glad we were able to be a part of this.

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Diabetes Hero

Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??

When I first saw this topic, I was convinced that I would write about my daughter. That is why I posted the pictures of her yesterday. She is now 16, and the young lady she has become, and the opportunities she has jumped at and succeeded at, have been a direct result of her diabetes. And I am so proud of her. It would be very easy for her to pull back and hide (not that she doesn’t have those days).

But then I thought of another here. Her endocrinologist. We have had the worst few years when it has come to doctors. In fact, before our current doctor, my daughter had decided not only that would she NEVER go into the medical field (because she did not want to be associated with doctors) but also that she would never listen to a doctor again. They don’t know anything and they simply don’t care. Her words, not mine. However, I could not blame her for that, for her experience had proven just that.

A few years ago, the doctor she had been seeing since her diagnosis as a baby, died unexpectedly. And at his own hand. She was furious. He had promised that he cared about her. He had promised that he would be there for her. He lied.

The doctor hired to replace her seemed nice enough. But when we went in for our first appointment, she talked to my just-turned-13 daughter like she was six. And suggested cute little games we could play with her brother at the breakfast table about guessing how many carbs are in different foods. She had been doing this for 11 years. The doctor would never win her over after this.

I ended up having to change my insurance in order to change doctors. I really did not want to, but the fact was that my daughter was NOT buying into this doctor, and she was really the only one that mattered. And she was coming up to important years, and I really needed her to buy in!

The next doctor we found, we stayed with for a year. He promised to get her on the pump, yet every time we went to see him, he had no explanation as to why we had not progressed on getting the pump. The nurse checking us in routinely asked my daughter if she had diabetes. This also did not go over well as we saw this same woman every six weeks. She clearly did not care. She did not een know who Emily was.

Then one day at the pharmacist, after 9 months, we realized that the doctor had prescribed the wrong insulin. No wonder her A1C had jumped to 10 (when it had always been in the 7s)! And when the pharmacy called the doctor, he claimed to have no idea who we were. He never had a patient by that name and had never heard of us.

But this is one of those cases where I guess having that happen was a blessing. That is when we found her current doctor. It has only been a year, but my daughter loves and, more importantly, respects her. She doesn’t preach, scold, judge or act like she knows exactly how my daughter feels. She is just a shoulder to cry on (literally) and a support. Plus, she got her on the pump within three months. And for all of you on the pump, you know what a big deal that was!

So I dedicate today to her, Dr. Jamie Wood. You have not only given my daughter incredible care, but you have also given her a chance to trust a doctor. And with a lifetime of doctors ahead of her, that is a tremendous gift!

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Saturday Snapshots

Again, thanks to Bitter-Sweet for encouraging me to post this week!

Today’s assignment: Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

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What They Should Know

I am back for day 5 of Diabetes Blog Week, courtesy of Karen Graffeo of the blog Bitter Sweet.

Today’s topic:
“What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?” Let’s do a little advocating and post what we wish people knew about diabetes.

I am going to take a slightly different take on this. Since it is my daughter who has diabetes, I “live” with diabetes, but not in the same was as those who have diabetes. But the one thing I wish others would know is probably something those with diabetes want others to know also: Type 1 diabetes is not the same as Type 2 diabetes!

It probably wouldn’t be so bad if the diagnosis of Type 2 diabetes wasn’t fraught with so much judgement. I cannot count the number of times that people have not only told me, but also argued with me, that a tea from India, a new diet, or the proper amount of exercise would cure my daughter. Or the times I have been asked if she ate a lot of candy when she was young. The underlying tone always seems to be that it did not have to be this way, as if we could have done things differently to have avoided this. Or that we could be doing something …and we aren’t.

I know that the people who say these things are not trying to come across as judgemental. Most of the time, they are simply trying to be helpful. And quite frankly, the way that the media covers diabetes, it is a wonder that anyone knows anything about Type 1 at all!

That is my wish. But what can we do other than continue to talk to people, without taking offense or getting defensive, and take such moments to educate people about the differences?

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One Thing to Improve

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II am so grateful that I found out about Diabetes Blog Week! Thanks to  Karen Graffeo of Bitter-Sweet for hosting this.

It’s day 3 and here’s today’s topic: Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

Today’s topic is going to be a lot harder than yesterday’s. Only because the things that I could do better make me more emotional. What could I do better? Sometimes I worry that I am not sympathetic enough.

The other day my daughter went low. Unfortunately, neither of us realized that. She is 16 and was being crabby and difficult. Not surprising – after all, she is a teenager. I was one a long time ago too! And I remember the mood swings, the emotional roller coaster, the insecurity, and yes, the brattiness. So I get it. But boy it gets old! And sometimes I don’t handle her hormones very well. This was one of those times.

For all of those with teenage girls, I am sure you can imagine how the interaction between the two of escalated. She ended up crying, and I stormed out. Then suddenly she started yelling out that she was low. I brought her meter to her, and indeed, she was low. Very low.

But I was so worked up and frustrated, I just found it nearly impossible to let go of the anger at how she was treating me and move to comfort her.  I had to walk out of the room.

I knew the moment that I left her side that I needed to try to do better, to be more compassionate…

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One Great Thing

I’m back! And I am excited to continue writing.

It’s day 2 of Diabetes Blog Week, hosted by Karen Graffeo of Bitter-Sweet.

Today’s topic is One Great Thing. Here’s the assignment: Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!

I don’t have diabetes. But my 16-year-old daughter was diagnosed with Type 1 diabetes 15 years ago. Throughout the years, I have spent a lot of time beating myself up, angry for not doing a better job helping her control her numbers. But as she has grown older, she has taken more and more control over her diabetes. At this point, she pretty much does everything herself without much input from me. So I do not have as much opportunity to be hard on myself anymore.

However, today, I want to give my daughter Emily the credit. She does so many things spectacularly! But perhaps what most impresses me is that she has finally come to “own” her diabetes. For a long time, she didn’t really want anyone at school to know she had diabetes. She didn’t want to talk about it with anyone. She didn’t want anyone asking her questions.

I, on the other hand, felt so helpless that I immediately partnered up with JDRF, volunteering, fundraising, speaking, etc. Emily just came along for the ride. But two years ago, she decided that she wanted to get involved. Since then, she has been interviewed on TV, given speeches, raised money, and raised awareness. And she is a natural. She has such poise, such grace, such ease. It is amazing to watch. I am so proud of her.

As devastating as her diagnosis is, she has taken that burden and been able to discover strength and talent that she may not have tapped into otherwise.

Hmmmm. I am going to have to remember to tell her how proud I am of her! I don’t think a mom can say that too often…

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Find a Friend

I plan on finding lots of new friends this week. I am not new to diabetes, for my 16-year-old daughter has had diabetes for nearly 15 years, but I am new to the world of blogging. I am looking forward to meeting new friends, writing all week, and reading all of your thoughts. Should be fun. Let’s go!

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Diabetes Blog Week

This blog has existed in my head for quite a while. But, as usual, life kept getting in the way of my simply starting it. Then, when I was looking around at other diabetes blogs and websites, I came across Bitter-Sweet (a great name, by the way!) and learned about the 3rd annual Diabetes Blog Week. So I am taking this opportunity to write my first week of blog posts. Why does it always take some sort of imposed deadline to get me finally motivated???

I look forward to this journey…

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