I Will Always Defend My Friends

Last week I had an interesting thing happen. I drive for a ride-share company in my spare time. It's a good way for me to save up for things I want to do, when most of my "regular" income goes to bills and day to day expenses. One evening, I picked up a lady. We started to chat and during our chat, I mentioned that I was currently driving to save up to attend Friends for Life this summer.

I shared with her that I had diabetes since I was a child and that I loved getting together with other people who lived with diabetes. One of the best parts of spending time with those with diabetes is having people around you who "get it."

As we neared her destination, she told me that she had Type 2 diabetes. That she had been diagnosed a couple of years ago, but that she didn't share it with anyone because of the stigma behind diabetes. Essentially the "you caused it" attitude that follows those with diabetes, especially Type 2. I was able to share with her about the D-OC, and gave her the #DSMA chat information for twitter. I hope that she takes some time to get out there. To understand that there are those out there who "get it."

What I took from this conversation was her fear. Her general shame about having diabetes. While I didn't get the impression she felt like the diabetes was her fault, it was apparent that she knew other people thought it was her fault. Full disclosure, this woman was not obese.

Then, yesterday, Mick Mulvaney, director of the Office of Management and Budget (a White House role) made an absurd statement while speaking at Stanford University. He spoke about having a safety net for people who get cancer, but then stated "That doesn't mean we should take care of the person who sits at home, east poorly and gets diabetes."

WTF.

This is by no means the first time I've disagreed with a politician. I do that on a regular basis and have for most of my life. But this is a direct attack on people that I love. I WILL NOT sit by and idly watch while someone in a huge position of power spreads misinformation about diabetes. I WILL NOT sit by and let some people (even those in our own community) say, "well I have T1. I didn't do anything to get that."

I have T1 diabetes. I have had this auto-immune disease for over 31 years of my life. I have friends with T2 diabetes. Many of them, in fact. Guess what? They didn't do anything to get T2 either. While it doesn't have the same auto-immune components that T1 has, studies have shown, time and time again, that there are genetic components to T2 diabetes. Proof of this is people that are not obese who get T2 all the time. Also, those who are obsess and never develop the disease. While lifestyle choices CAN play a role in the development of T2 diabetes, it is by no means the only component.

Misinformation is continually spread about diabetes, but I refuse to not speak up when I hear something. This is no different. The truth of the matter is that "some groups have a higher risk for developing type 2 diabetes than others. Type 2 diabetes is more common in African Americans, Latinos, Native Americans, and Asian Americans/Pacific Islanders, as well as the aged population."

Poverty has also been shown to play a role in the increases rates of Type 2 diabetes. A study in Canada even showed that the chances double or triple of developing Type 2 diabetes if the income is less than $15,000 per year.

So what does this mean to me? This means that misinformation being spread by people about diabetes is really an attack on the poor and minorities. It isn't funny to joke about getting diabetes when you eat something sweet. It isn't kind or true when someone suggests that lifestyle is the only factor for those diagnosed with ANY type of diabetes.

We're all in this together. Don't let the bullying continue. Don't let our friends be attacked. No one asks for diabetes. Some people win the genetic lotto and here we are because of it. We ALL deserve health insurance. We deserve to have access to affordable health care. And even IF lifestyle were the only contributing factor to developing Type 2, those people would STILL deserve affordable accessible health care. No one should be ashamed of their health diagnosis and I'm going to continue to speak out until no one else tells me they don't share their diabetes diagnosis for fear of judgement.

The American Diabetes Association released a statement today, regarding Mr. Mulvaney's statement. They said it well, and I share it here:

On behalf of the nearly 30 million Americans living with diabetes, the American Diabetes Association is extremely disappointed by the misinformed statement of Mick Mulvaney, director of the White House Office of Management and Budget, as reported by the Washington Examiner. Mr. Mulvaney's comments perpetuate the stigma that one chooses to have diabetes based on his/her lifestyle. We are also deeply troubled by his assertion that access to health care should be rationed or denied to anyone.
All of the scientific evidence indicates that diabetes develops from a diverse set of risk factors, genetics being a primary cause. People with diabetes need access to affordable health care in order to effectively manage their disease and prevent dangerous and costly complications. Nobody should be denied coverage or charged more based on their health status.
We are saddened by Mr. Mulvaney's comments, and we look forward to working closely with the White House and the Department of Health and Human Services to dispel the erroneous stigma around diabetes and the millions of Americans living with this disease.

Health Care & Politics

This is what a pre-existing condition looks like.

It's no secret that the ACA (Affordable Care Act) is under extreme pressure right now. It is on the verge of being completely dismantled by our government. Replacement is still hazy, with no real plan being announced for something to take the place of ACA at this time.

I'm doing my best to keep up with what's happening on this front, but things are happening so quickly right now that it is difficult at best. I'm aware that ACA is not a perfect system. There are issues that need to be addressed, including rising health care premiums and deductibles that are breaking the pocketbooks of many Americans.

That being said, I'd like to point out a few things that ACA (Affordable Care Act) has done that are positive. So no matter what side of the ACA fight you're on, I think we can all agree on the fact that we want the best coverage we can get, and it needs to be financially affordable for all Americans. If the ACA is overturned, let's hold our lawmakers accountable to make sure that certain protections are kept in place. If the ACA is kept, and "fixed," let's hold our lawmakers accountable to make sure that everyone can afford good health care coverage.
Some things that the ACA has done:

1.) Children are allowed to stay on their parents' insurance until they are 26 years old, giving them time to complete a decent education and establish themselves before taking over this costs themselves.
2.) No insurance company can deny health insurance to a person based on a pre-existing condition (I have 3 of those!).
3.) A person's health insurance premium is not based on their gender (it used to be) or their health conditions (same thing). Pre-ACA a woman was charged more than a man for health insurance. And if you were lucky enough to get health insurance with a pre-existing condition, you could be charged way more for your premium.
4.) There are no longer annual and lifetime caps on what an insurance company will pay out for a patient. Pre-ACA, an insurance policy could limit the dollar amount they would pay out in a year, or even in a lifetime. Someone with a chronic illness or traumatic event could max these out and be stuck paying the difference.
5.) Preventive care is now free. This means your yearly check up with your doctor is free to you. This just makes sense. Regular health checkups mean less illness. Less illness means less cost to the insurer and to the patient.
6.) Birth control is free to women. Let's think this out: Pregnancy is expensive for patients and insurers. If you offer free birth control, there are less unplanned pregnancies, meaning less cost to insurers and patients. Less unplanned pregnancies also mean less abortions, and I think everyone can agree that is a good thing.

These are all positive, GOOD things that came along with the Affordable Care Act. We need to keep these things (among others) if we are to have a strong, healthy society. So no matter how we get there, by fixing the ACA, or repealing and replacing it with something better, we need to be sure that we keep these things in whatever legislation is used.

So, don't hesitate to contact your lawmakers. There are websites that even make it easy, like DPAC (Diabetes Patient Advocacy Coalition). Or you can visit usa.gov to find out who your elected officials are and contact them yourself, by phone, email, fax, or set up an appointment to meet with them in person.

This shouldn't be about Democrats or Republicans. This shouldn't be about taking a side, or who you voted for. This is about making sure that everyone has access to affordable healthcare. That isn't partisan. That's just kindness. Diabetes and Celiac don't discriminate. Many other pre-existing conditions don't discriminate. They can affect anyone at anytime. So that means this issue affects us all.

Life Goes On

Despite my celiac diagnosis, my life has to go on. So far, since I have gone gluten-free, I've only eaten out one time. Luckily, this restaurant had a gluten-free menu, so I didn't have to worry much about what I was going to eat.

Even finding things to eat in my house is sometimes difficult. I've already had a couple of nights where I have walked in my house and thought, "What the heck am I going to eat for dinner?!" I've been thinking about things like meal planning and left overs for lunches and stocking my pantry with non-gluten-y things.

Tomorrow, however, I head out for drinks with friends. To a restaurant that I have never been to and no nutritional information listed on the website. So I did it. I made "the call."
I had heard, from some online chatter, that this place has gluten-free hamburger buns. But I had questions regarding their waffle fries, and how their burgers are prepared.

I did all the things I've been told to do. I called around 3:30, when it is less busy. I asked to speak to a manager, who was very nice. I introduced myself and explained that I had celiac disease and was planning on coming to the establishment and that I had some questions. He was quite friendly and very knowledgeable. They do, in fact, have gluten free buns for their burgers. The waffle fries are out because they have a breaded onion and some breaded veggies that they fry in the same fryer. Mr. Manager answered a few other questions I had and I felt confident when I got off the phone with him.

Hopefully tomorrow will go smoothly and I will have no trouble with finding something I can have on the menu. As much as I HATE being the person who "bothers," I know I don't have a choice anymore. The choices I DO have are to stay at home and never eat out, or to do what has to be done to eat out without endangering my health. As much as I hate it, I WILL NOT let this disease (either disease) stop me from living my life.

It is going to make my life different. I'm going to be unsure and uncertain for a while. I'll mess up. I'll make mistakes. I'll learn new things. So even when my anxiety is at 1000% over what to eat and what to do, I'll keep on. I don't have another option. I won't stop living.

Two Journeys

My life has been revolving around celiac lately. The only way I can explain it is that I am doing my best to learn as much as possible about celiac and the gluten-free diet as I can before I meet with the GI doctor and start the gluten-free diet.

That being said, diabetes hasn't gone away. It's still here. All the time. Being a total pain in the rear. BUT, I feel like I'm starting a new journey. For many years now, I've been blogging (although inconsistently) about all the things that I deal with in regards to diabetes. All the things that concern me about diabetes.

Now my journey involves living with and coping with TWO chronic illnesses. Both of them invisible, yet such a big part of my life.

Tomorrow is my first appointment with my new gastroenterologist and dietitian. I start a journey of a confirmed diagnosis, learning to live without gluten, and learning to pay even more attention to every morsel of food that enters my mouth.

I have had my pity parties. At least the "pre-gluten-free" pity parties. For now, I'm done. Now, I start the new journey. The new part of my life. It doesn't mean I'll never be sad again. It doesn't mean I won't have pity parties again (can anyone say "diabetes burnout?"). But it does mean that I am going to tackle this, like I have diabetes.

I'll do the best I can. I'll hate it. I'll love the things it brings into my life. I'll hate the things that are no longer a part of my life. I'll have good days and bad days. I'll sometimes be sick because of celiac. Just like I'm sometimes sick because of diabetes.

But just like diabetes had never stopped me, I don't intend on letting celiac stop me either. I'm already out there, online. I'm searching and making contact with others. Perhaps I'll find an online community like the D-OC. A community that will help me get through on the bad days, and will make me laugh and smile on the every day. I'll learn tips and tricks. I'll learn new ways to cook, and to bake (my secret passion) and maybe I'll share those so someone else out there, who has been newly diagnosed with celiac disease, will see that their life isn't over.

This blog has been diabetes for so long. It will still be diabetes, it just might be a bit more celiac for a while. And then one day I'll find the happy medium, and I'll share both sides of my story in equal parts, so others can share with me.

No More Shame

Miss Manners,

There's too much shame and stigma involved with diabetes. Some of it is external. Some of it is internal. But it is all very real to a person living with diabetes. People place blame on those living with diabetes. It must be your fault that you have diabetes. It must be your fault that your blood sugar is too low. Or too high. It must be because YOU did something wrong.

Being a vital organ is hard work. I wasn't cut out to be a pancreas. But I am. Every single day. But because I'm human, and because there are about ten THOUSAND external and internal things that I have no control over, diabetes can't always be perfect. I can't always have perfect blood sugar levels and sometimes I have to do things like test my blood sugar. In public.

GASP!

Heaven help the people around me that might see me test my blood sugar or give myself a bolus with my insulin pump (or an injection, if my pump happens to fail). I do my best to be discrete when I'm in public, but I don't hide what I'm doing.
I am a person with diabetes. I can test my blood sugar from six to twelve times a day. I can't always get up and escape to a bathroom. Even if I could, public bathrooms are disgusting and gross. In fact, I rarely use public bathrooms, unless I don't have an option. So why on EARTH would I test my blood sugar in one?

I am pretty open about my diabetes. I wouldn't have this blog, and be a member of the Diabetes Online Community (which I'm sure you didn't even know about until your recent response to a reader with diabetes) if I wanted to hide my diabetes. But I still have some shame.

Sometimes I feel like people think that I chose to have diabetes. Trust me, I didn't. Sometimes I see people stare at my insulin pump infusion site when I wear it on my arm. I want them to ask what it is, and not just stare at me like I'm a freak. Sometimes I wonder if they see the small lump under my dress that is my insulin pump or the small bump on my leg through my pants where I wear my constant glucose monitor. I wonder if they think I'm a spy or a secret agent wearing electronic equipment...or if they just think I have strange tumor like things growing on my body.

Diabetes is hard. Not only on your physical body, but on your mental state as well. After 28 years of living with Type 1 diabetes, I should know. I should also be over my self-consciousness and shame. But it still creeps in from time to time. That's why I do my best every single day to take care of myself. To not have shame for something I had no control over. And to help bust the diabetes myths that are out there. I don't want those living with diabetes to feel like they should be ashamed of ANYTHING.

Miss Manners, when you tell a PWD (person with diabetes) that they should check their blood sugar in an airplane bathroom, you're telling them they have something to be ashamed of. And they DON'T. Discreet, yes. Hiding it completely, NO WAY.

I'm tired of people being ashamed of their diabetes. While it isn't something to be proud of (who wants to be proud of having a chronic illness??), it IS something to be proud of living with successfully. I'm a person with diabetes. I'm living successfully with diabetes. No more shame, Miss Manners. The problem isn't with your Gentle Reader. The problem is with you.

Take a little while. Read some blogs. Talk to someone living with diabetes about what it's LIKE to live with a disease that never goes away. Maybe you'll be able to give some better advice to your next Gentle Reader.

Sincerely,

Cara (T1 diabetic for 28 years)

Moving Mountains: Medtronic Diabetes Advocates Forum

Over the weekend I was invited by Medtronic to their 3^rd Diabetes Advocate Forum. It was my first year attending. And I hope I did my best when tweeting the event (#MedtronicDAF) and now, as I share my thoughts with you all about what happened over the weekend. Full disclosure: Medtronic and Bayer paid for all of my transportation, lodging and food. They did not ask me to write anything. All of my opinions are my own. Now that the uncomfortable part is over, onto the good stuff.  

It can be so easy for these things to become a marketing pitch. It’s understandable.  Medtronic is a company. They have a product to sell. More importantly they have the new MiniMed 530G with Enlite sensor (which has an automatic glucose suspend for lows). Accuracy is important to all of us. With so many variables in diabetes as it is, we need all the accuracy we can get. I was happy to hear that the accuracy of the new Enlite sensor is better than its predecessor. While I get decent results with what I have (the predecessor to the Enlite), better is ALWAYS better.

There was also a lot of discussion about the reach for the artificial pancreas. There was explanation, and I felt like there was some clarification on the part of Medtronic and the D-OC. My idea (and I think the one of most of the people) is that a true artificial pancreas would do everything for you. Adjust for lows and highs, give you more insulin when you eat, etc. I always thought it nearly impossible due to currently available insulins. It just simply doesn’t work fast enough to automatically adjust and still avoid a huge spike in blood sugars.

When those at Medtronic are looking at an artificial pancreas as a device that would do everything for you….except bolus when you eat. We would still be responsible for that. It was nice for me to understand what they mean when they say “artificial pancreas.” It clears up a lot, and helps ME to adjust my thought pattern when it comes to an artificial pancreas.  

Medtronic has also started a program called StartRight that helps new pumpers and CGMS users adjust to the devices and assigns them a person that they can always talk with for questions, tips, and anything else. The company has helped increase the rates of patients staying on pump therapy and CGMS, instead of tossing in the towel too quickly. I wish there had been a program around like this when I started pumping. It might have made things much easier (though my need to search for things about insulin pumping eventually led me to the D-OC, and for that I’m eternally grateful).

We also had a great session led by #DSMA/Social Media folks (Scott J, George & Bennett) that involved brain storming, group suggestions on things we can do a individuals and as a whole in the D-OC for advocacy. It felt wonderful and productive (which led to the REAL productivity on Saturday) and inspiring.

And all of this stuff happened on the FIRST DAY! Believe me when I say it was exhausting mentally and physically. And can I also say that after the first day, there was only mention of products as they pertained to what we were discussing when it came to the advocacy that we discussed.

On Saturday we covered some very heavy topics and had what I felt like was an experience that may be life changing. We started out talking about advocating for change in healthcare (specifically insurance). Terms like Medicaid, Medicare, CMS (Centers for Medicaid and Medicare) and “outsourcing” were thrown around like candy.

The biggest thing I came away from that session with how important it is for Medtronic that Medicare and Medicaid start covering pump and CGMS technology. In fact, it was said that it is one of the most important things that they are working on this year. My thoughts on that: GOOD. Let’s get behind them on this and advocate. It’s a huge mountain and I feel like it needs to be not only moved, but completely obliterated.   

We were also blessed to have Dr. Francine Kaufman come speak to us about her passion (and that of Medtronic) for helping those living with diabetes both here and in other countries. As many times as we complain about the technology, medications, etc that we have, others have it so much worse than we do. There are people who can’t even get insulin. And if they do, they may not get the same kind of insulin any month in a row. Care is so subpar that it can’t even be called “care.”

Some things that stuck out in my head from Dr. Kaufman’s presentation? In Haiti, the mortality rate for those diagnosed with T1 is 80% in the first two years. Most don’t even make it to diagnosis. The parents of a young girl in India were told to “let her go” when she was diagnosed. She wasn’t worth anything. And just so you know, she’s a healthy adult now. And another picture that had the tissue box being passed around the room. A young girl in Haiti laying in a bed. Dr. Kaufman said “this is the face of diabetes in Haiti. This girl died.”

I can’t stop the tears as I type these things. In fact I had trouble that day as well. Right before lunch, I stood in the “museum” of the building (where you can see the technology and how it has advanced through the years) and just cried. I couldn’t tell you why. I just couldn’t stop the tears. It was an emotional morning. One that I’m glad I experienced, but pulled emotions from me that I hadn’t felt in a while.

After lunch we met with David Lee Strasberg, method actorand son of the famous Lee Strasberg (yes, the theatre geek in me was FREAKING OUT). It turns out that David and his son both have T1 diabetes. And even more, he helped us out. We participated in a workshop that was all about connecting with people to get things done (a.k.a. making “the ask”). The four areas, Relationship, Vision, Opportunity, and Ask, are all things that we need to work on to organize ourselves as we advocate mightily for diabetes (or anything else).

The end of the afternoon is where the true magic happened. It was building all weekend. Little sparks of magic here and there. Electricity moving through the crowd

. All weekend the air had been thick with positivity, motivation, and inspiration. And then we got to channel it all.

We spent the last hour or so of the day working together as a group of advocates to create a plan and a goal. Our goal? Raise $10,000 for the Life For a Child program through the Spare a Rose/Save a Child initiative (to be rolled out in the coming weeks). The best part? This wasn’t just talk. This was plan making. This is where the rubber meets the road. People were tossing around ideas, taking notes, making concrete plans. “I’ll contact so and so.” “What if we did THIS as a group to get the word out?” “I’ll do THIS.” This was magic.

In the past year or so, I’ve felt detached from the D-OC. Not any fault of the D-OC, but more fault of myself. I’ve felt unmotivated and at one point even talked with a friend in the D-OC about deleting this blog altogether (she wisely advised me to keep it up, and I’m ever so glad I did).

I can say after my weekend at the Medtronic Diabetes Advocacy Forum that I feel renewed. I feel inspired. I feel like I can DO something. And I like that. Time to move mountains people, are you ready to join me?

Advocates & Dr. Kaufman

If you want to read other advocates’ view on the weekend, check out the following:

Heather Sara George Kerri Kim Jacquie Catherine Chris Christel Meri Chris (yes there are two) Jess

Strip Safely

Test strip accuracy is important to me because as a person with diabetes, I test my blood sugar. As a type 1 diabetic, I test my blood sugar sometimes as many as 12-15 times a day. True, with my constant glucose monitor (itself with accuracy issues) I sometimes test less. But no decision I make during the day (or night) is made without regards to what my blood sugar is.

The recommended range for blood sugar for a person with diabetes is 80-120. Some people say 70-130. Either way, these are ranges we should be shooting for our blood sugars to be a majority of the time. Anytime you deal with insulin (and food/stress/illness/other medications/the weather/the house that venus is currently in) blood sugar levels of a T1 diabetic is going to be outside of those ranges at times. But most of us strive to keep as tight of control as possible for our health.

Blood sugar levels that are out of control can cause major problems. In the immediate it can cause death, and in the long term it can cause complications which lead to death. And most of us don’t have a death wish. We want to live a healthy and as long as possible.

I’ve had T1 diabetes since February 5, 1986. It was a few months before my 5th birthday. I was practically a baby. And I was struck with this disease because my body decided to attack the insulin producing cells in my pancreas. Because of that my parents had to give me insulin injections, monitor what I ate, and test my blood sugar many times a day.

As time progressed I grew up. I learned to drive. I moved away to college. I’ve gotten a job. I’ve purchased a house. I’ve traveled the country with friends (and even sometimes alone). These are all things that a person without diabetes could do and no one would think twice about it. People living with diabetes do these things regularly and while some people may think nothing about it, our friends and family know the truth. Living alone, traveling, driving a vehicle, getting married, having children, and many other activities that are “normal” for most, take way more energy thought and planning for those of us living with diabetes.

Where is all of this going? Nearly every decision I make involves a number. My blood sugar number. Insulin keeps me alive. But it has the ability to kill me as well. Too much, or too little, insulin can lead to serious sickness and even death. This means I have to know how much insulin to take. How much insulin I take is determined by a lot of scientific math….and my blood sugar number.

Let’s just say my blood sugar is 120. This is good…right? It could be. But it could also depend on if I have “insulin on board” (this is insulin still working actively in my system), if I’ve just eaten, if I just completed exercise, if I’m getting ready to do exercise…among other things.

That’s a lot of variables, isn’t it? Think that’s bad enough? Try this:

Back to the beginning. My blood sugar reading says I’m 120. I’m getting ready to go on a road trip. It’s going to be several hours of driving for me. I am going to eat, right now. Forty-five grams of carbs. This means I’m going to give (hypothetically) 6.4 units of insulin for the food. And according to my goal blood sugar of 100, it also means an extra 0.5 units for the 20 points my blood sugar is over 100. So… 6.9 units of insulin, food, and driving.

Hypothetically this would work perfectly. But what if my meter reading was wrong. What if my blood sugar was actually 80, instead of 120? With the food and the insulin I took, a low blood sugar might not happen right away, but when my insulin peaks and my food is gone, that extra 0.5 units of insulin I took for that 20 points I was over 100….could drop me as much at 30-50 points. Which means an 80 could eventually be a 30 or a 20.

If I wasn’t passed out with a blood sugar of 20 or 30, I could be. If I didn’t catch the low blood sugar, it could be disastrous. To me, to other drivers, to people in the vehicle with me.

And 80 instead of a 120? That’s a 40 point variance. It could be enough to kill someone. Yet current FDA guidelines have a 20% ± variance. That means my 100 could be 120 or 80. And even worse than that? The FDA enforces these guidelines before the strips can hit the market…but they do NO enforcement after they are being manufactured. Which means even though a company may be able to meet the guidelines the FDA requires (even though they aren’t really strict enough) before they hit the market, they don’t have to meet them after they being manufacturing. There’s no monitoring to ensure that they are sticking to the guidelines at all.

This is a serious problem. I believe that there are lives that are hanging in the balance. I believe there are people who could very well die from this. If a medication was hitting the market and causing a huge risk of death to the people taking it, the FDA would step in and put a stop to it. Lawyers would have infomercials on at midnight telling you to call them if you took it so that they could help you sue the company.

Why isn’t anything like this happening with diabetes testing strips? What is it that keeps the FDA from monitoring the post production requirements of meter strips? What is it that keeps the FDA from making the guidelines even tighter for strip accuracy? Why isn’t anything being done?

I’m not sure what the reasoning is. It seems quite ludicrous to me. But it’s happening. And we need to do something about it. If we stand up and say something. If we show examples of the danger and the immediate risk. If we raise our voices, perhaps someone will listen.

My fellow D-OC members are raising their voices. They’re writing letters on their blogs and to their elected officials and to the FDA. They’re putting things out there. And now it’s my turn. This is my first letter, to anyone who might stumble across it. I’m setting myself a personal goal to send emails to all of my elected officials and to the FDA with my concerns for test strip safety.

I don’t want to go to sleep one night, thinking my blood sugar is fine, and not wake up the next morning. I don’t want to do that to my friends or my family. I don’t want to break their hearts in that way. I don’t want the hearts of other friends, family, and loved ones to break if they lose someone to diabetes if there’s any way it could have been avoided. I’m standing up and raising my voice for myself and for others living with diabetes. We DESERVE accuracy. There are enough variances in diabetes without worrying if our test strips are giving us accurate results as well.

For more information on Strip Safely, an inititive to improve strip safety and accuracy, go to their website. They also help tell you how YOU can make your voice heard. This post is my July entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/july-dsma-blog-carnival-3/.

Opinions and Name Changes

Even though I’ve been slightly detached from the diabetes online community in the past several weeks, I’ve seen some talk about the petition going around that seeks support to have the names of T1 & T2 diabetes changed. This grabbed my attention almost immediately. I started searching around on the different posts that people were putting up, and even received an email from the women behind the movement and I read it as well.

I did some research, though for the most part I’ve been fairly quiet about it. Others in the D-OC have done a much better job writing about this and stating their opinions, but I wanted to state my own. It’s simple. And it’s nothing that hasn’t already been said. But I feel like I should say it from ME. I want my words on this.

First off, I was diagnosed with diabetes in 1986. I was just a few months shy of my fifth birthday. It was called “juvenile diabetes.” The pediatric endocrinologist that I saw told my parents that my pancreas probably hadn’t worked well from the time I was born, but I hadn’t been big enough for diabetes to show up yet. He also had me on one injection of NPH insulin per day. Barely 6 months later I had my tonsils taken out (due to chronic illness). My hospital records at the time show my a1c was 12.6 and in those records it stated “diabetes is finally stable enough to perform tonsillectomy.”   

Just in reading the above, if you know much about T1 diabetes, you will see about a million things wrong with that. I was sick a LOT as a child (a result of being a preemie). My guess is that one of my many bouts with strep throat triggered the deadly attack on my beat cells, resulting in my diabetes. We all know an a1c of 12.1 is far from stable and that, even in 1986, one injection of NPH per day wouldn’t cut it.

But it’s what we had. It’s what we understood. Eventually I went to two shots per day (of a mix of NPH and R). Still not great, but it was what we had. I rarely went to a pediatric endo. I ended up in a coma when I was 8 because no one ever taught my mother that just because I was sick with a stomach flu didn’t mean that I didn’t need insulin (in her mind I wasn’t eating… I didn’t need insulin).

Life was different. I lived for a few years before I remember being called “insulin dependent” and many, many more years before I was dubbed “Type 1.” But it’s was what we knew. It was what we had. Until I joined the D-OC, I’d never heard of an adult being diagnosed with T1 diabetes. I’d never heard of a child being diagnosed with T2.

Knowledge was different. Education was different. And even now, I feel like my own education about diabetes is constantly evolving. It was only a few years ago, I am ashamed to say, that I even mentioned about a name change. The conversation started somewhere online and I said, “Heck, yeah!” But I was wrong. I’ll admit when I am.

I am not skinny. If I told a random person I had diabetes, it would be very easy for them to look at me and say, “If you’d lose weight, you’d be cured!” In fact, I even had a “health coach” tell me I could come off insulin if I lost weight….and she had my paperwork in front of her with my T1 diagnosis on it.

I have friends who are T2 who are not overweight. I have friends who are overweight that are not T2. I have friends who had diabetes when they were pregnant. I have friends who once took insulin for T2 and now take nothing…not even a pill. But the fact is that we ALL have diabetes. We ALL put up with media, medical, and public misinformation. We have ALL lost friends to this disease (or know someone who has). We ALL need to take a stand. For each other.

Of late, I have been very much on my soap box about the way that T2 patients are treated. By medical professionals, the media….and even some of us in the D-OC. I would love to have an off line advocacy in my area that dealt with informing T2s and informing medical professionals about T2.

The truth is…I feel like this name change petition is an attack against T2 patients. And I don’t like it. People with diabetes live with a HUGE amount of guilt, no matter what type of diabetes they have or when they were diagnosed. I think T2 patients often get even more of this guilt piled on them by the media and even their medical team.

Would I love to have the media, the general public, etc know that I have diabetes caused by an auto-immune attack on my beta cells when I was a kid? Sure. But making them understand that isn’t about changing the name of the disease. It’s about educating people about diabetes and the different types there are. It’s about educating people that just because someone is overweight, doesn’t mean they could “eat less/diet/exercise” and make said diabetes “go away.” It’s about educating them that just because someone is thin or athletic doesn’t mean that they have “the bad type” of diabetes.

Diabetes is an extremely complex disease with extremely complex treatments and extremely complex emotional issues that come along with living with a chronic illness “every day, every hour, every minute.” We do NOT need to place something else that will ultimately cause more division, more confusion, and more discord. We should be pulling together as a community and advocating for more research, better technology, better treatment, and more education for the general public.

I know I’ve only said what others have said. But that’s just my opinion and I really felt the need to write about it….and that’s what a blog is for, right? 

Also, on a completely separate note: This is my 500th post. Wow.

"Do No Harm" Does Harm

Tonight on NBC there is the series premiere of a new show called “Do No Harm.” I’ve known this show was coming for quite some time. In fact, I knew about it when they were filming the pilot, mostly due to the fact that one of my favorite Broadway actors is in the show. Turns out SEVERAL Broadway actors I like are in the show, and it was directed by a Broadway director that I also like.

Because of that, I had been waiting on this show to air. Waiting for news about it. Getting little snippets of what was going on. A week or so ago, NBC made the premiere episode available online. I watched it last week. Of course, I watched it on the chance to see some actors I know from the stage, like Lin Manuel Miranda, Michael Esper, and the star of the show Steven Pasquale.

I won’t spoil the whole show for you. I won’t give away all the details, but the basic premise of the show is that Dr. Jason Cole is a brilliant neurosurgeon with a problem. He has Dissociative Identity Disorder… also known as a split personality. His alter ego, Ian Price, is not a nice person. He’s aggressive, a playboy, and an all-around NOT good guy. Ian shows up at 8:25 every night and goes away at 8:25 every morning. So basically, for 12 hours a day, Dr. Jason Cole can’t be around anyone he knows or cares about, as Ian will hurt them.

There is an outstanding cast of actors in the show. It has an interesting plot line. It COULD be the kind of show I would like to watch. BUT (there’s always a but) there was some terribly incorrect information regarding diabetes throughout the entire show. And the saddest part of the entire thing is that some of the information regarding diabetes will probably continue to be a part of the show for as long as it lasts.

“Why?” you ask? Most medical shows will touch on diabetes for an episode or two here and there, but it never lingers very long. In “Do No Harm” Dr. Cole says he has diabetes. As he is a brilliant neurosurgeon, he has to test his blood sugar levels before he performs surgery. The machine they use is interesting. It’s not an actually BLOOD sugar machine. It’s some sort of device that he places his finger in and it uses infrared light to test his glucose levels.

Honestly, it looked like a pretty awesome machine, except that it was HUGE (think a rolling blood pressure machine from a hospital). And I’m pretty sure it doesn’t exist. I did some research on the internet after I saw this. From everything I can find, this technology doesn’t exist yet. There areseveral companies working on the technology that would allow us to check ourglucose levels with infrared technology, but so far nothing has been approved, and from what I can find, it doesn’t even really exist more than what scientists seem to be TRYING to develop. Basically, nothing headed our way anytime soon.

So, what I wanna know is how to get one… cause if it’s on TV, it must exist, right? You see where I’m going with this? Um, I don’t want people telling me I don’t have to poke my fingers all the time cause I can get this cool machine that tests my glucose with infrared technology. I don’t want to have to take the time to explain that it’s Hollywood making something else up.

That was alarm bell number one in my head. But, you know, it’s not THAT big of a deal….but then Dr. Jason Cole has a conversation with the director of his hospital, Dr. Vanessa Young (a lovely and talented Phylicia Rashad).  

Dr. Young offers Dr. Cole tickets to a Phillies game because it’s his birthday. He tries to turn them down and she says “Just because your diabetes keeps you from working at night doesn’t mean it keeps you from going to a game.” And there’s alarm bell number two in my head. What do you MEAN that diabetes keeps you from working at night?!? I know several people who live with diabetes (T1 & T2) who work the night shift. And why wouldn’t a DOCTOR (and probably a pretty extensively trained doctor, if she’s running a major hospital like in the show) call bullsh** on that? A doctor that knows anything would know that isn’t true.

And that led into alarm bell number three….how does someone who is unable to work for at least 12 hours a day able to make it through medical school? I know people who have gone through med school. There are many, many long shifts. Many times they end up sleeping at the hospital and definitely working night shifts during their residency and/or fellowship. So how did Dr. Cole make it through medical school to become this stellar neurosurgeon??  

Obviously, he is using diabetes as a reason to be able to be home and away from everyone when his alter ego takes over, but what diabetes? It’s kind of a flimsy excuse, especially if you are in the medical profession. And this makes it obvious that the character doesn’t actually HAVE diabetes.

The show continues on and there is an incident in which Dr. Cole can’t remove himself far enough away from people to keep his alter ego from taking over. Dr. Cole reschedules a brain surgery for nighttime. At first I couldn’t figure out WHY. Alter ego Ian Price has no medical training. And Ian pretends to be Dr. Cole… so this untrained person is going to operate on a human? Turns out there is a reason that Dr. Cole did this. And this is where alarm bells four, five, six, etcetera went off in my head.

Ian Price, pretending to be Dr. Jason Cole, enters the surgery room and they demand that he checks his glucose levels (on that awesome, non-existent machine) before he operates on the patient. When the results come they are 315. Here is the basic of what happens in the operating room at that point:

Ian Price asks what’s going on. A nurse says, “You’re hypoglycemic (the closed captioning read “hyperglycemic”, but if you listen to it several times like I did, it SAYS hypoglycemic). You’re going into diabetic shock!” Another nurse/doctor says “Give him 20 units of regular insulin.”

I’m going to stop right there and point out the things wrong with JUST that part. First off, a blood sugar level of 315 isn’t going to send someone into diabetic shock. Possible ketones maybe. Thirst, headache, at worst, blurry vision. But I’ve never known anyone to enter into diabetic shock (I’m assuming they mean full diabetic ketoacidosis with unconsciousness) from a 315.

Secondly, 20 units of regular insulin for almost anyone with diabetes could be lethal. It’s way, way, way too much insulin for a 315. I assume there are cases of super insulin resistance that would call from something like that, but in general, 20 units of regular insulin is crazy. Also, regular insulin is kind of outdated. I know some people who use it still, but in general, it is so slow working that insulin like Levimir, Humalog, and Novolog are used. They work faster.  

Onto the rest of the scene (which was only about 30 seconds to a minute long). The doctors and nurses in the operating room restrain Mr. Ian Price (who fights them the whole time) and the jab him with some epi pen looking thing while he thrashes around. He immediately goes into convulsions. A nurse says, “He’s tachycardiac-Adverse reaction from the insulin.” Some else yells “Call anesthesia stat! And get me a stretcher.” Mr. Ian Price passes out.

Okay, all the things wrong with that part…. Oh my. Well, first off, the epi-pen looking thing. I suppose it might have been an insulin pen of some sort. Perhaps. But really it just look like they jabbed him with this thing in the arm. Insulin doesn’t need to be administered like that at all. And a true diabetic would have administered the insulin themselves.

Then there is the immediate onset of convulsions. Insulin does NOT work that quickly. There is NO insulin out there that works that quickly. It doesn’t exist. In fact, when you look at active insulin times, the quickest I could find was Aphidra, which according to WebMD has an active insulin time of 1 ½ to 2 hours. This means that while it might start working right away, there’s nothing that would drop the blood glucose levels so quickly as to put someone into immediate convulsions, even if their blood sugar was completely normal and they were given 20 units of insulin. Also a note: Regular insulin has an active insulin time of 5 to 8 hours. http://diabetes.webmd.com/guide/diabetes-types-insulin

Then there is the next part. About the tachycardia. I actually did not know what that word meant. I had to look it up. The American Heart Association says that tachycardia is a heart rate of more than 100 beats per minute in an adult. I didn’t know that insulin (or a low blood sugar) could cause a rapid heart rate. But apparently it can. I googled that one too, just to be sure. Again, I just can’t imagine blood sugar dropping so rapidly that it would cause immediate convulsions and rapid heart rates. I suppose that this could be considered an “adverse reaction to the insulin” but I just call it a low blood sugar.

And what was that about calling anesthesia?  Why? Were they going to knock out the man already passed out on the floor? I mean really? What was the point of that? Why did no one suggest glucagon (or the more medically potent D50, also known as dextrose). This would have brought around a person having a low in just a few minutes.

At this point, I’m laughing hysterically at the computer screen as I watch the show. I wanted to tell them how crazy they were being. But it just got worse and worse.

Dr. Jason Cole wakes up the next day in a hospital room and Dr. Marcado, a friend who is helping him try to keep Ian from coming out every night, is in the room with him asking him what went happened. Dr. Cole states that he moved up the surgery on purpose because he knew that Ian would fail the glucose test.

When Dr. Marcado asks how he knew he’d fail he says “Come on, Ruben, personality affects body chemistry. Aggression triggers adrenaline” and Dr. Marcado follows up with “Which looks like high blood sugar.” Dr. Cole finishes up with “He’d be given insulin, which he didn’t need.” And Dr. Marcado chimes in, “It would knock him out.”

Okay, I’m not a medical professional. I could be wrong. But again, I googled it. Everything I found in regards to adrenaline and high blood glucose levels was directly related to people who already have diabetes. I KNOW adrenaline causes my liver to kick out sugars, raising my blood sugar levels. But someone without diabetes (which we know Dr. Jason Cole to be) should be covered by their own, working pancreas, right?

And what was that about personality affecting body chemistry? Huh? How would it affect his body chemistry? It’s just so completely out there that I was appalled. By the end of the show I was laughing, but I was also saddened.

taken from the Do No Harm facebook page

What happens when a show is SO full of misleading information about diabetes? Especially when it’s a medical drama? I mean, people listen to the stuff on these shows. They believe the stuff on these shows. And I get to spend all of my free time and energy trying to correct what Hollywood destroyed.

I’ve been told that any medical show is supposed to have a medical technical advisor. I googled. I checked IMDB. I googled again. I couldn’t find anywhere that there was a medical technical advisor listed. It confused me. Maybe because it was a pilot episode they didn’t have one? I wanted to know who told them this information was correct.

The only thing I could find was the name of the writer of the episode and the producers of the show. It was written by David Schulner, directed by Michael Mayer (a Broadway person that I LOVE), and produced by Rachel Kaplan, Michael Mayer, David Schulner, and Peter Traugott.

I really do want to like this show, but they can’t ditch the diabetes storyline at this point. It’s too engrained in who Dr. Jason Cole/Ian Price is as a character. But it’s also a lousy cover for his Dissasociative Identity Disorder and perpetuates the myths about diabetes.

You can find “Do No Harm” on facebook, twitter, and about a million other social networking sites. Do something. Watch the first episode. Then SAY something. Blog about it. Post on facebook about it. Tweet them about it.  I tried to find twitter accounts on the producers and writer but was unable to.

Personally, I just hope this blog post gets out there. Because “Do No Harm” could actually cause a lot of harm by misleading and perpetuating untruths about diabetes. I plan on asking them on twitter & facebook who their medical advisor was. I hope I get an answer. If they don't have one, they should hire me. At least for the diabetes related stuff. I'd tell them to scrap the entire storyline involving diabetes. But then they'd probably try to write about a medical cure.

JDRF South Region T1D Symposium - 2013

Over the weekend I attended the JDRF South Region Symposium in Nashville. I was so blessed to get to go and I have so many things to share. This was the first Symposium of it's kind that I've been to. And the first that Nashville and the South Region of JDRF has done. I'd personally like to see it become a regular thing. Let me tell you why....

When they announced this Symposium back in September, I knew right away that I had to go. Why? Well, one of the guest speakers was the D-OC's own Kerri Sparling. I wasn't about to let Kerri come to Tennessee and NOT go see her. Plus, I kind of wanted to see her around a bunch of people with Southern accents. ;)

I signed up to go with a dear friend of mine. She's not a blogger...or a tweeter, but she's on facebook and TuDiabetes and she occasionally guest blogs for me. Sherry is one of the kindest souls I know and I knew we would have so much fun.

When the weekend arrived, I was buzzing with excitement. I knew some other people I'd met before were coming. I also knew there were a few people that I'd never met IRL before that were going to be there. AND I knew there were new people to meet.

There were vendors set up when we were registering and getting settled in on Saturday morning. One of the good things about that was that I got to hold and play with the new t:slim insulin pump. I thought it was pretty awesome looking, and fun to play with. It also appeared to be more sturdy than I first imagined...though I guess the true trial would be how long it lasted (I'm tough on pumps).

Before we could even sit down to have lunch, I ran into some old Nashville area diabetes friends that I hadn't seen in a while. And I got to meet some bloggers and tweeters that I hadn't had the chance to meet yet, including Julie, Andrea, Holly of Arnold and Me & Aaron Jaffe (who I didn't know had a blog called Rep the Betes, until this weekend; shame on me!).

Seeing Victoria again was SO much fun. And I got to meet some awesome new friends like Stephanie, Madison, and Jordan (who had two blogs like I do! You can find her d blog HERE).

Honestly, the friend connections are always my favorite part of things like this, but there was also a host of fantastic information. Listening to Tom Brobson, National Director, Research Investment Opportunities for JDRF, shared his experience with the artificial pancrease trial, and shared some of the focus of JDRF.

One of my favorite quotes of the weekend (that Tom Brobson shared) was "Less Until None" in reference to JDRF working toward diabetes having less burden, being less invasive, having less complexity, and having less danger in our lives until there is no diabetes left. I like the sound of that. While I don't know that I expect a cure any time soon, the "less" stuff has a nice ring to it.

I attended both of Kerri's breakout sessions, and was thoroughly glad I did. The first was on Pregnancy & Parenting. While I'm not a parent, not pregnant, and not planning to be, I do think that pregnancy and parenthood are in my future somewhere. I wanted to know what she did and is doing to have a healthy pregnancy, and being healthy for her daughter. Kerri had an endo there also answering questions (turns out it was MY endo!!!), so there was medical advice, as well as Kerri's personal experience.

Kerri's other session was on T1 Diabetes in the "real" world. There was a whole room full of young people, older people, parents of children with d, people who'd been recently diagnosed. It was great to see everyone coming together and sharing stories. And just for reference, Kerri's talks sound exactly how she writes her blog posts. :)

Another session that I attended was on diabetes complications. It was a little depressing, but I liked some of the information I gained. I had mixed feelings about it, honestly. It wasn't what I was expecting, so I was a little disappointed. But at the same time, I found it very informing and I learned a lot, so I can't be TOO disappointed.

 

Overall, I thought the weekend was a rousing success and I really hope that JDRF continues to do things like this. While I understand that they like as much money as possible to go into funding research, there is a huge mental aspect to diabetes and this is one way to help. It goes right along with that "Less burden" part of the JDRF "Less Until More." Because things like this make diabetes less of a burden in my life.

New Year with Diabetes

New Year with Diabetes : Striving for _______ in 2013.

This is the topic for this month's #DSMA Blog Carnival. When I saw the topic I spent some time thinking about what I want to do this year in regards to diabetes. My first thoughts were about specifically health related things. Perhaps trying to lower my A1c? Exercising more (or at all)? Eating healthier? Avoiding things I know make my blood sugar spike? There are so many things I could strive for, but in truth most of these things are things I work toward at some point in every year.

Then I started thinking about the advocacy part of diabetes. Truth be known, my blogging has decreased, my active online presence has drifted from nearly non-existent to semi-active. I want to change these things. So I have a few major goals for 2013. I won't call them "resolutions" because I never seem to keep those. Instead, they'll just stay goals. I'll work toward them steadily and if I reach them in 2013, that will be amazing. If not, I'll keep at it until I get there.

First off, I'd like to get back into active tweeting on my diabetes twitter account. I feel like I've slacked, and I miss my friends.

Secondly, I want to make a goal to blog at least once a week for this blog. That means 52 blog posts in 2013. I want to make this happen.

Next, I want to make it a goal to read (and comment) on more blogs. I have slacked on my reading of blogs, and I want that back. It's how I keep in touch with what's happening in the D-OC and I need to get back to that.

And finally, I want to become more active locally in diabetes advocacy. There is so little that goes on in my area, and I feel a need to get people together. Living in a rural area makes it hard to find people who are willing to get together, but I think it's possible. And I want to make this happen.

So these are my goals for 2013. I hope to reach them soon, and feel more than free to slap me around if I look like I'm not doing them. I give you permission. :)

 

This post is my January entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/january-dsma-blog-carnival-2/

World Diabetes Day 2012

November 14th, 2012

World Diabetes Day

 

Diabetes unites us. It's made us friends, family, soul mates. 

But as much as we are about the people that diabetes has brought into our lives,

we'd all love to have a cure.

 

Take a minute today to tell someone why you're wearing blue. Speak up if you hear someone say something that's untrue about diabetes. Share a piece of yourself with someone who might not know much about diabetes. Being an advocate doesn't take much. You don't have to have a blog or write a book or be a public speaker.

 

 

On a different note, It's funny that our official symbol is the blue circle, but we have so many other little symbols and inside jokes. Glitter, bacon, sprinkles, cupcakes, unicorns. 

 

Honestly, I'm a little unsure where the love of all of these things came from and how they came to be such a part of our Diabetes Online Community. But they are there.

 

I felt the need to incorporate as many of them as possible into my postcards that I made for the World Diabetes Day Postcard Exchange. I am sticking them in the mail today (if my glue dries in time). One is headed to the southern part of the country (further south than me) and the other is going around the world to Australia.

 

I'm looking forward to getting some postcards myself! I hope you joined in this year.

 

Oh yeah, and

HAPPY WORLD DIABETES DAY!

 

Photo A Day Challenge: Diabetes Style

Today begins a month that is dedicated to Diabetes Awareness. Diabetes Awareness Month is a time when we all try to bring awareness, truth, and understanding to diabetes. Not that we don't try every month, but November is kind of "official." :)

One way you can help people understand a little more about diabetes is by joining in on the Photo A Day challenge. If you are on Twitter or Instagram (or both), post a photo a day. Topics are below (in lovely artwork by Sarah. Be sure to attach the hashtag #NDAMphotoaday

Here's my photo for Day 1: #struggle

Join in!

Steel Magnolias....Updated or Not

On Sunday night the new "updated" version of the classic movie (based on the classic play) Steel Magnolias. I've written about my concern and worry about what this movie reboot would be like. Many of the people in the D-OC have been worried about how diabetes would be approached in the movie. Rightly so, as the original basically made it look like if a woman with diabetes had a baby, she was doomed to die and leave her child motherless.

First off, let me say (in case you didn't read what I've written previously), I adore the original version of Steel Magnolias. I cry every time I see it. Secondly, let me say that the Lifetime reboot, with an entirely African-American cast, was handled very well.

I don't get Lifetime, so I went to my mom's on Sunday night to watch the movie. She typically wouldn't watch the movie, just because she's the mother of a daughter living with Type 1 diabetes (ME!) and what mom wants to watch a movie that a person with said disease dies? But my mom watched it with me, cause she's super awesome like that. If you don't believe me, go read THIS.

Overall, the "updated" version of Steel Magnolias was nearly IDENTICAL to the original. There were a few exceptions. The cast is the first and most obvious of the changes. There are a plethora of cell phones and newer technology devices, along with the occasional pop-culture reference in the script. The line dancing at the wedding reception was replaced by some more updated, and culturally appropriate music and dance for the "new" cast. But so many of the things were exactly the same. The lines, the infamous armadillo cake, the pink wedding with a ton of bridesmaids. Sometime it was the same right down to the camera angles.

Is it weird that I'm glad that they stuck so closely to the original? I am. The areas that were improved were the areas of diabetes information. It was pointed out very early in the movie that the reason Shelby shouldn't have a baby wasn't her diabetes, but her chronic kidney condition. It was never mentioned if the two were related, but most of us can assume it probably was.

When M'Lynn is arguing with Shelby's decision to have a child, it's pointed out by Shelby that her medical records were an issue in the adoption process. This is something I was glad to be brought up because I've looked into it. While diabetes isn't a flat out "no," any chronic health condition is a serious hurdle to get past. I'm sure if you added in the kidney issues, a "no" would be likely. Shelby did say that she was tightening her control, checking her blood sugar 10 times a day, and seeing doctors specializing in high risk birth; all of these are things we can relate to and I'm GLAD they brought it to light.

Also, we actually got to see Shelby check her blood sugar. Only once, but it's an improvement over the first movie. Though there was never any mention of an insulin pump, CGM, or any other treatment. I can't complain, really. Diabetes was kind of glossed over (though not as much as in the first film), but the movie, in my opinion, is about the relationship between the women in the story more than it's about Shelby and her diabetes and kidney issues.

One of the things that most people wouldn't notice, unless they'd seen the staged play, was that M'Lynn's famous break-down was changed to more closely reflect the play. In the original movie, her break down happens at the grave-side. In this version, it happens in the beauty shop, as it does in the play. I appreciated that because I feel like it would be more likely to happen that way. The difference? I still like Sally Field's breakdown more than Queen Latifah's. Don't hate me. I love Queen Latifah, but the fact remains I was more moved by Sally's performance.

Same goes for Julia Roberts' low blood sugar performance in the original versus Condola Rashad's. The one thing about Rashad's low that WAS better was the guilt she felt when she began to come back to herself after drinking the juice. I've been known to do nothing buy cry and say, "I'm sorry." after a low like that. And the brought in the cold sweats as well. They never said it, but Queen Latifah was fanning Rashad. Someone without diabetes may not have noticed it or even understood what it was. But as a person who has suffered major cold sweats after a severe low, I did notice it and appreciated the attention to detail.

Honestly, the movie made me cry. I was expecting that. I didn't hate it. I wasn't expecting that. I truly enjoyed getting the chance to "live tweet" the movie with several other members of the D-OC. And I really appreciated getting to watch the movie with my mom.

The moment that will live in my brain forever, though, was something my mom said to me. We were both crying on the couch as Shelby had her low. Me, because I know what that's like. I've felt that. I hate that. My mom because..... well, let me just quote her. She said it so well. "It's so easy to forget what it's like when you aren't around it anymore. It's not fair that I can forget and you're still dealing with it all the time."

Final judgement, out of 10

Respecting the original: 10

Updating diabetes info: 10

New cast: 8

Overal: 9

Steel Magnolias: Raising Money for JDRF

Steel Magnolias. This movie and/or play is often a source of debate in the Diabetes Online Community. Some people love the show. Others hate it for its ending and somewhat inaccurate portrayal of life with Type 1 diabetes can be. I personally fall in to the “love it” camp, while my mother hangs to the other side. She’s always told me that the thought of anything happening to me, her Type 1 daughter, made the movie too difficult for her to watch.

My love of theatre has let me to a couple of different productions of the play, most notably the Broadway production from 2005 starring Delta Burke and Christine Ebersole. I was recently made aware of a staged reading of Steel Magnolias at which all proceeds would go to benefit JDRF. Like anything that involves theatre, I was intrigued. Add in the diabetes connection and I got excited.

After doing a little research on producer David Youse and his Four Things Productions, I found that Four Things has a pretty successful history of production to raise money for charity, including a staged reading of The Normal Heart that eventually made its way to Broadway. I decided to email the producer back and request an interview. Mr. David Youse was very much willing to help out, wanting to get word out about this production, in order to raise the most money as possible for JDRF.

First of all, I’d like to thank you for taking the time to chat with me about this production of Steel Magnolias and about the work that you are doing at Four Things Productions. Can you tell us a little bit about Four Things Productions and what you do?

Four Things Productions is committed to raising money for various non-profits by presenting theater events with wonderful actors. I try to pick one play and one charity, per year, and raise awareness and the most funds, that I can.

How do you pick the organizations that you choose to donate your proceeds to? Do you have connections to Type 1 diabetes? What brought you to JDRF?

The process can be different each time. Sometimes I think of which play to produce first, one that I think an audience would like to see. Then I find a charity that equals what the plays is about. The Normal Heart would be an AIDS related charity. Steel Magnolias-Diabetes. My mother was a Type 1 diabetic so I'm very familiar with the disease and have that personal connection to it. Playwright Robert Harling and I both decided that JDRF would be our pick, since the funds go to research. We looked at other charities, but felt that JDRF was one that we connected with, because of what they do.

Did you choose to produce Steel Magnolias first, and then pick JDRF as your organization? Or was it JDRF that came before Steel Magnolias?

After the success of The Normal Heart, I realized that the 25th Anniversary of Magnolias was coming up. Knowing the play, I knew that I wanted to present it for a diabetic cause.

You have managed to put together an amazing talented and well known cast and  two-time Tony winner Judith Ivey is directing your production. How was this group of women put together, and are you aware of any personal connections to Type 1 diabetes that might have drawn these women to the project?

Robert Harling [playwright] and I met about two years ago, first, on this project. I asked him who is dream cast would be, 25 years later. Names, names, names kept coming up. Then when you bring on board the brilliant Judith Ivey, she has her vision and the director will take the lead. The three of us come together to discuss who would be great for which role and you want to cast it with the women who you know will connect on stage. This is truly an ensemble piece so each character has to be carefully thought of. Of course I look to see if anyone is public about being a Type 1 diabetic, but what is on the internet is never the real answer. But everyone, it seems, has someone they know who suffers from diabetes.

For my readers who are not your typical “theatre people,” can you explain the difference between a staged- reading and a full production?

A staged reading is simply what is says, a reading of the play with very minimal movement. In a full production with sets, lighting, music, etc, the vision of the director will establish what they want to get across not only in the performances, but with the visual as well. In a staged reading, I believe it's a more powerful way to explore the writing and creating art for the individuals who are witnessing it. By simply reading the stage directions each audience member can create what the beauty shop looks like, what they are wearing and their mind can wonder on what they see. What is so remarkable about this process is that the person sitting next to you can have their own vision of what is happening. So, everyone can enjoy their own show, in their own minds and create for themselves what they are witnessing.

I must note that your staged reading of The Normal Heart, directed by Joel Grey, ended up making its way to New York where it was eventually produced on Broadway. Do you have any hopes of that happening with this production?

I never thought that The Normal Heart would end up making its way to Broadway. I never think that far in advance about a project. I believe that if you focus on why you're presenting the reading and who it's for, the world will take care of you. So, right now, I'm presenting The 25th Anniversary staged reading of Robert Harling's Steel Magnolias, directed by Judith Ivey, to benefit JDRF. After Los Angeles, we will be presenting it in New York on December 3rd, for JDRF, and after that, we can only see what happens.

Any last things you’d like to share with my readers?

Supporting theater, in any city, makes us more aware of others, their joys, their sorrows and it not only creates great conversation, it educates us on all of us. Support the arts when you can, and support a cause, which you are passionate about. I believe it will make us a better country. INFO AND TICKETS: www.steelmagnolias-25years.org Thank you, David Youse

Thank you again, for taking the time to answer some questions for me. I know that there are several people in our Diabetes Online Community that live in the Los Angeles area, and I hope that they get the chance to see the show. I know I would love to be there to see my support for diabetes research and my love of theatre meet on stage. Break a leg!

If you are in the Southern California area next weekend, please try to go see this production. It will be more than worth your money. The production will be at Broad Stage in Santa Monica, Califorinia, Saturday, September 9th, 2012 at 6:00 p.m.

Four Things productions can be found on facebook and the individual Twitter account for this production is located HERE. If you are in the area and get a chance to see the production, please let me know! I'd love to have you guest post about the play.

Roche Social Media Summit 2012

For the first time, I was invited to a blogger/advocate summit. July 29-31, I was in Indianapolis, Indiana, courtesy of Roche, maker of Accu-Chek products, as well as many other diabetes related supplies and devices. I put my disclaimer here: Roche paid for all of my travel expenses, including flight, lodging and meals. That being said, all opinions are my own and anything I say in this post, good or bad, is my own opinion.

For the past four years, Roche has been gathering bloggers, online advocates, and medical professionals with an online presence to have the Roche Social Media Summit. This year, I was one of the lucky ones invited to attend. I feel blessed to have been invited and even more thankful after having experienced the actual event.

There were so many things that happened, that my mind has been nearly overloaded since I got back late Tuesday night. I thought about writing more than one post in order to get all the information in. But I instead chose to do only one post instead. There were so many of us at the event, that I'm sure whatever aspect you are looking for, someone else has probably covered it.

Our trip started out with check-ins and an evening meet and greet. One of my favorite things from the few hours between my arrival and the evening event was the chance I got to go have lunch with Lee Ann Thill, Kelly Kunik and Scott Johnson. I'd met Lee Ann and Kelly previously, but I'd been wanting a face to face meeting with Scott Johnson for a LONG time, as he was the FIRST person to ever comment on this blog. Also, he has a really great Minnesotan accent. :) (Just a note, everyone loved my thick country accent this trip, but I loved listening to Scott talk! I have an accent crush.)

There was also an almost constant group of people in the lobby of the hotel greeting people as they got in from their travels. Meeting many of them for the first time, and seeing some old friends again was great. And I loved that most of it happened in the lobby of the hotel. At the meet and greet there was a great amount of time to talk with each other, as well as with some Roche employees. I loved that time and loved getting to chat with and get to know so many people that I've known online for years.

The first full day of the summit started with a welcome and then a great presentation about the DOC: Yesterday, Today, Tomorrow. I loved that Roche was acknowledging that the DOC exists, has a voice, and is continually growing.

Roche also brought in guest speaker, Josh Bleill from the Indianapolis Colts. I could write and write about all the amazing that was Josh Bleill, but instead I'll say this: Josh Bleill is a double amputee, hurt in Iraq as a Marine, and an extraordinary human being who gives me motivation to continue on with the things that I love and is a great representation of what it means to overcome.To read a much more eloquent version of Josh Bleill's visit with us, check out Chris Stocker's post. He says it all.

We also were able take a trip to the Roche campus to have lunch, a discussion with several Roche "big-wigs" about technology and where Roche is headed, as well as a tour of the Research & Development facility and the Manufacturing Facility. Did you know that Roche is the only diabetes company that makes test strips and meters in the U.S.? I was unaware of this. Also, in only ONE of their plants (the one in Indy), a three-shift day can turn out 15 million test strips. 15 MILLION. That's a lot of test strips.

That being said, while we were having the Q & A with the Roche people and the tour of the campus, I was even more appreciative to have people present who were more technologically inclined than I am. Scott Strumello, Kitty Castellini, Bennette Dunlap, and several others. These people were asking the questions that I wouldn't have thought to ask about technology.

We finished out Monday with a trip to see a minor league baseball game (the Indianapolis Indians) and to be honest, I'm not much of a baseball fan, but there was still fun to be had and I spent the entire game chatting with people and realizing how many amazingly SMART people we have in the DOC. It makes me proud to know that our community is so diverse that we each have our own goals and talents.

And there there was this thing:

Apparently this is Rowdie. I didn't know what he was, other than the team mascot for the Indianapolis Indians. Apparently he's a bear. Who knew? Read about him here. Also, he's kind of creepy. At one point he put my head in his mouth. I haven't managed to chase down the picture yet. If you are reading this & you know who had it, let me know! I want that picture!

Even after the game, as late as it was and as tired as we were, there were several of us who weren't quite ready to call it a day. Several of us got together to chat, have a drink or two, and laugh together. Eventually, though, it had to be done. Sleep had to be on the agenda.

Tuesday morning began a session on the Roche portfolio. It was a detailed look at what Roche is doing now and what they're working toward. Some of the stuff was more about the direction they were hoping to head and we were asked not to discuss it, as they haven't had a chance to finalize things and submit things to the FDA, and that could cause problems later. That being said, there is some exciting stuff that is a possibility for Roche. I look forward to seeing great things from them in the future.

They shared with us their new insulin pumping system, the Accu-Chek Combo system, and actually gave us their newest meter, the Accu-Chek Nano. While I don't see myself changing to the Nano right now (my OneTouch reads to my insulin pump), it is a pretty cool device. The also shared the new Accu-Chek FastClix lancet device, which is a newer version of my beloved Accu-Chek MultiClix.

Some things I found interesting:

-After acquiring the FDA cleared Solo Insulin Pump, Roche has decided not to release it to the public.

-After entering a research & development contract with Dexcom, Roche is going to be distributing the version of Dexcom that will be used by medical professionals in office, NOT the ones that we as patients would have.

-The MultiClix is going to eventually be a thing of the past, as all the Accu-Chek Nanos, as well as all future Accu-Chek Avias will be packaged with a FastClix.

 

A final speaker closed out our time at the Roche Social Media Summit 2012. Steve Richert, from Living Vertical came to speak with us. Steve is a Type 1 diabetic who is in the middle of a project that involves him climbing, in some capacity every day for a year. This project, called Project365 is a pretty amazing thing. If you'd like to help Steve out, go HERE and watch the video, and then "like" it. For every "like" Roche will donate $1 toward Project365.

I loved my time at the Roche Social Media Summit. I was honored to have been asked, and I hope I did everything I could to represent everyone with diabetes to the best of my ability. Thanks to Rob Muller and Todd Siesky, along with all the other amazing Roche employees we met this year, for putting forth the effort to find out what we as consumers want and what we think. It means a lot to know you are listening. Had I not been in the group picked for the Summit this year, I still have faith, like I have every other year, that I am being well represented by members of the DOC. The best thing that I learned at the Roche Social Media Summit was that we are a truly diverse and intelligent group  of people in the DOC.

And thank you to Roche for taking the time to get to know us, the consumers. May you continue to step "out of the box" and make positive strides in diabetes care for those of us that live with diabetes 24/7.