advocacy

Friends For Life 2012 - A Whole New World

Don’t Just Do Nothing

Last Thursday morning officially kicked off the Friends For Life 2012 conference program. Appropriately, for me, it started with a plate full of bacon. I love breakfast any time, but I especially love breakfast at Friends For Life. Imagine being in an environment where everything you want to eat, from salads and entrees to sides and desserts, is carb counted, serving sizes are indicated, and everything is delicious. That’s food at Friends For Life.

A very special thanks to one Mike Schurig, aka Food Dude, for all of the yellow and green cards indicating nutritional values, making sure that there were Celiac-friendly options, and for helping to make sure that people with diabetes (PWDs) and their families had excellent food options to choose from.

Coupled with breakfast on Thursday morning was the opening keynote address by Tom Karlya, aka Diabetes Dad. He encouraged everyone at Friends For Life to not be satisfied with sitting on the sidelines, but to get up and do something to make a difference in the world, no matter how big or small it may seem. Then he showed us this video of Derek Redmond and his father from the 1992 Olympics in Barcelona.

Tom had a very simple message for everyone: Don’t just do nothing. Friends For Life was started because one family was going on vacation in Orlando, Florida and they decided to spread the word and see who all else with diabetes might show up. 500 people showed up, and Friends For Life was born.

I had a boss once who said to think about the things that people would remember 100 years from now, and make those things the focus of your life’s work. I can’t say for certain that there is anything that I have done (yet) that will be remembered 100 years from now, but if I can make the life of a person with diabetes better, then I feel like I’m on the right track.

Don’t just sit on the sidelines when you know that there are people in the world that you can help. Like Derek Redmond’s dad, get up, push through the barriers, and act. As much help as we may need ourselves, we can do even more when we help each other. Together, we can make a difference. That is what Friends For Life is about, that is what Students With Diabetes is about, and that is what being a person with diabetes should be about. We can self-promote ourselves all day long, and sometimes that is exactly what it takes to get things moving in a positive direction, but at the end of the day it is the lives that we have made better that count the most.

Friends For Life 2012 - A Whole New World

USA Flag

Diabetes Supreme

Today there is cause for people with type 1 diabetes and other pre-existing conditions to celebrate. The Supreme Court ruling confirms that people with diabetes (PWDs) will retain protection from insurance discrimination, and parents can rest easier knowing that their children with diabetes will be covered for life-saving diabetes supplies until at least age 26, when they can get their own insurance without fear of being denied because they are insulin-dependent. Sure, the Affordable Care Act isn’t perfect, but it’s one step closer to not having to fear how we are going to get that next vial of insulin, test strips, and other necessities to stay alive. We can rest assured that diabetes won’t prevent us from getting health care, because diabetes is a big reason we, people with diabetes, need health care to begin with.

USA Flag

MTV Moon Man - CC License - Photo by Deidre Woollard

MTV True Life: I Have Diabetes…and Support

So I’m a day late, but I watched the MTV True Life: I Have Diabetes episode last night, and I have a confession… I didn’t hate it.

The first thing some folks may want to jump on is that MTV didn’t get all the facts about diabetes exactly right. Well, that is true, but they were at least playing the correct sport in the correct ballpark, so to speak. I’m starting to think that the only way to get all of the facts right about diabetes is to simply not talk about it at all. I’ve had diabetes for more than three decades, and I don’t always get all the facts right either. So there. Overall, I think MTV did a good job, and presented a group of people and a subject that folks can actually care about (as opposed to “True Life: I Scratch Myself in Inappropriate Places in Public” or “True Life: I Toot Glitter and Crap Rainbows”).

Actually, I might would watch that last example. But anyway, moving on…

I could identify the most with Kristyn, a young girl in her mid-twenties with Type 1 diabetes who is faced with the realization of the abominably high costs of living as an adult with diabetes. Pumps, pump supplies, insulin, strips, pens, pills, and any other medications that we may have to take adds up to a lot, even with insurance. Without it, it’s kind of mind blowing how much this stupid disease can cost. I can relate because right now I’m starting the research of switching insurance companies just because my own costs are slowly but surely creeping into the danger zone. Diabetes already cost me my pancreas, so I’m not really interested in it costing me an arm and a leg to go with it. (See what I did there?)

I’m really proud of Kristyn, because she’s taking control and sacrificing her independence as an adult to get control of not only her diabetes, but also the cost of living with diabetes. That is a really, really hard thing to do, and it’s admirable that she’s not accepting failure as an option, even when it seems like an uphill battle. Although her mom came across as a bit overbearing on the show, support is incredibly important for all of us, whether we have diabetes or not, and I’m glad Kristyn has that.

Yesterday, Kristyn somehow found Kim’s post about the episode, and now she is connected to several members of the Diabetes Online Community (DOC) via Twitter. I predict that it won’t be long before she is connected to more people with diabetes (PWD’s) both online and in real life, and is playing an even bigger role in our diabetes world. You read it here first.

Matt was someone else that I was a bit fascinated with. Matt is a college student, was portrayed as a party animal and heavy drinker, and also has Type 1 diabetes. Although I think Matt would do well with more support for living a high quality, action packed, totally excellent life as both a person and a person with diabetes, I wonder if he is ready. I can’t speak for everyone, but for me it was easy to catch myself judging Matt as a college kid that just doesn’t care about his life with diabetes as much as he cares about being the life of the party. I know that I like to do extreme things and have adventures, but I also enjoy feeling like I’m in control of my diabetes while I do them, and not having to choose between the two options. In my world, the two go together like peanut butter and jelly. But that’s MY world. That is what works for ME. Your diabetes, and Matt’s diabetes, may and probably does vary. There is not right or wrong…there simply is.

I would really hate for Matt to feel like he is viewed as anything less than what appeared to be a nice guy, just because he was portrayed as enjoying an alcohol-heavy college lifestyle on MTV. When the time comes that he is ready for changes that work for HIS diabetes and HIS world, or even if he just wants to reach out and say hello diabetes world, then I will be one of the first people in line to welcome and support him and celebrate life right along with him. (Matt, if you get to read this, just say when buddy.)

I really didn’t have a lot that I could relate to with Jen, as her diabetes was discovered while she was pregnant with her son. I can’t imagine how hard it is to transition from a life of taking care of yourself to a life of taking care of you AND a child. Add in having to learn how to also take care of Type 1 diabetes, and that sounds like a lot to deal with. But I know without a doubt that it is possible, and there are an army of D-Moms and PWD Moms and even just us old standard PWD’s who are out there in the world and eager to help.

If this episode of True Life did nothing else, it reminded me that any one of these struggles with diabetes could be my struggle with diabetes. I am so thankful for the people that I have met that have helped me to realize that diabetes is a big priority in my world, and I hope to show them the same compassion and understanding that they have shown me. Diabetes is hard, and it’s no joke sometimes. Having a group of amazing people to joke about it with, however, makes all the difference in the world.

MTV Moon Man - CC License - Photo by Deidre Woollard

CC License - Photo by Deidre Woollard

Snow - 12-28-2011

2012 Goals & Resolutions

Last year I put together a post of some of the things that I wanted to accomplish in 2011. My first goal was to get my A1C under 6.2. At my last three endo visits, my A1C was 5.6, 5.7, and 5.6. Goal achieved, sort of, but with that low A1C came a couple of dangerous lows. Those A1C’s don’t make me a “good diabetic” anymore than those dangerous lows make me a “bad diabetic.” It’s just proof that an ideal number goal that signifies that diabetes is in good control is also very close to the edge of a low blood sugar disaster.

I made a resolution last year to wear my CGM more regularly. I did mostly, yet those two aforementioned lows both outran my CGM’s ability to predict the low blood sugar in time for me to fix the problem myself. During the first low, my CGM started beeping while A-Flizzle was feeding me glucose tabs. (See also: This CGM technology stuff has got to improve if we ever hope to see a closed-loop artificial pancreas in reality.) Unfortunately, due to expired sensors, supply refill woes, and now a CGM transmitter that is no longer transmitting, I’ve been without my CGM for 2-3 months, and I can definitely tell because my BG’s are all over the place. Like that sweaty 35 this morning, followed by a headache inducing 237 at dinner tonight. I’m concerned about my next A1C, but I know that it is just data, and I know that I’m struggling, and I’m just going to put my faith in my endo, my CDE, and myself to work together and turn this beat around. Diabetes is hard enough. Why beat myself up about it?

My #2 and #3 goals were really all about exercise, and if I look at them explicitly, I failed them both. I did not run a 5K, nor did I find a group to start cycling with on a regular basis. I did, however, discover the joys of spin class, so I’m chalking those up as a sort of win.

One goal I had that I’m extremely disappointed about not achieving is to get down to a stable 165 lbs. The first half of this year I did phenomenal at losing some weight, eating low carb, getting some exercise in, and really feeling like I was on my way to a more fit me. Then I had that low BG seizure at the beginning of July, where I chewed up my tongue and could only eat really soft, bland, room temperature foods for about 2-3 weeks, and that sunk my battleship. I was traveling at the time, so I resorted to eating total garbage like macaroni and cheese, soft cookies, potatoes, and starchy things that I had done so well at resisting in the first half of 2011. Now, here at the beginning of 2012, I’m right back to where I started, maybe even a little heavier. I have some new weight-related goals in mind though, so rather than throwing myself a pity party, I’m going to try a healthy helping of encouragement instead.

Another resolution I had was to go to the ophthalmologist. I’ve written about this experience, but suffice it to say that I did indeed go, and I got my card the other day reminding me to make a new appointment, and it isn’t something I’m as afraid of as much as I once was. I’m calling that an accomplishment.

Other goals and resolutions involved having adventures, paying off some bills, getting diabetes stuff that I needed (like a new medical ID bracelet), and remembering that even though diabetes is ever present, it isn’t the only thing that is important in life. All of those things I can mostly say I succeeded at, and am not opposed to carrying those ideals forward in the new year.

So without further ado, I present my 2012 goals and resolutions.

Goals
1. A1C <= 6.2. Less would be good.
2. Pay off at least two debts.
3. Have an adventure…regularly. Take pictures. (I really can’t emphasize this one enough. It’s a MUST!)
4. NEW for 2012: Drop some heft. Goal weight, 175 lbs. I will re-evaluate once this goal is achieved.
5. NEW for 2012: Complete an urban disturbance/warrior 5K, where you climb walls, jump fire, wade through mud, etc. I don’t know the exact name of these types of races. I just know I want to do one.
6. NEW for 2012: I will have a pool nearby this year, so I’m going to start swimming again. I miss it bunches. Plus, I need to get my bikini body ready for…*cough*…nevermind. Nothing to see here. Move along people.
7. NEW for 2012: Be successful with at least one big thing for diabetes advocacy. Measure of success to be determined based on specifics of the diabetes advocacy activity. That should leave me plenty of room to cause trouble.

Resolutions
1. Wear CGM consistently.
2. NEW for 2012: Find and go to the dentist, in addition to endo and ophthalmologist.
3. NEW for 2012: Exercise at least 3 days a week, even if work, blogging, and rest have to be sacrificed in order to do so. This will help my strength, energy level, blood sugar stability, and entertainment value while strutting around without clothes on.
4. NEW for 2012: Blog consistently, but only if it meets self-imposed quality standards. Or includes a good laugh. Or both.
5. NEW for 2012: Stop letting other people dictate my emotions. Their Jedi mind tricks are no good here.

Yeah…that’s a good start.

Snow - 12-28-2011

Time

Progress Takes Time

National Health Blog Post Month, Day 28: Say WHAT?! What’s the most ridiculous thing you’ve heard about health or your condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?NHBPM_2011_Day28

People say the darndest things, especially when it comes to diabetes. Most all of us have heard about how cinnamon can cure diabetes, how Halle Berry managed to wean herself off of insulin, and even how Chuck Norris’s tears contain the cure for diabetes. (Too bad he doesn’t cry. Ever.)

I can handle the ridiculous and imaginative ideas for curing diabetes that people in the publishing business come up with in order to sell copy and get clicks on their websites. I know, as well as they know, that they are often full of crap. Just look at the Reader’s Digest issue from a few months ago. It’s capitalism, and it’s meant to make money. We, as people with diabetes, regardless of type, have to make sure that we are smarter than the fly-by-night snake oil salesmen.

I get extremely upset with doctors who tell parents and children who are newly diagnosed that there will be a cure within five years. Or ten years. Or that it is just around the corner. I was told that when I was diagnosed at age two. That was 30 years ago. I’m not saying that we shouldn’t all have hope, but our efforts would be much better suited if we focused on living well with our diabetes (regardless of type), rather than surviving just long enough until there is a cure. What’s the point in a cure if we don’t make it that long?

If there was a cure for diabetes, it would not require me to buy someone’s book off of a TV infomercial or sign up for an annual subscription to a website. A cure would be grounded in science, and would include known experts in the field of diabetes who live with and work with this disease every single day that would be more than willing to vouch for whatever form and type of diabetes the cure is for.

I also believe that we would see it coming. True researchers dedicate their lives to finding a cure for diabetes. They don’t accidentally mix up samples and say, “Oh, wow, a cure for diabetes. How’d that happen?” So many people are stakeholders for diabetes improvements, and they have their fingers on the pulse of the research that is being done towards better treatments and a cure.

The things that I’m excited about right now are insulin pumps with low blood glucose suspend functionality. Basically, if the continuous glucose monitor (CGM) senses a blood glucose that is below a certain level, then it will automatically suspend the insulin pump for a period of time. I have low blood sugar unawareness, so this would be helpful to me to ward off severe lows, like the 35 that I had while I was at Epcot last week, and maybe even prevent me from having a low BG related seizure.

I’m also excited about CGM sensors that aren’t as invasive as what we have now. My biggest hurdles in wearing my CGM are the components themselves. I love the results, and the data that I get from it, but having to harpoon myself with a fat needle to insert my sensor and then attach a big honkin’ transmitter to it and tape it down so that it doesn’t fall off is really a burden sometimes. I remember the first home BG meters. They were huge, and heavy, and slow. Today they are tiny, and can report BG’s in five seconds, so I know we will get there with CGM technology as well.

As long as research and development is being done, and we are advocating for our needs, progress is inevitable. It just takes time.

Time

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

Florida Capitol - World Diabetes Day 2011

100 and World Diabetes Day

NHBPM_2011_Day16

Monday, November 14, was World Diabetes Day. All around the world people were wearing blue, sharing their stories with diabetes, advocating and increasing awareness, and even lighting landmarks blue. Here in Florida, the city of Orlando changed a number of their downtown landmarks to blue thanks in large part to the efforts of one Tremayne Sirmons, a person with Type 1 diabetes who made it his personal mission to turn the world around him blue for just one day.

A bit further north in Tallahassee, the folks at Novo Nordisk sponsored and managed to convince the powers that be to allow the old Florida state capitol building to be lit blue for World Diabetes Day. This was reportedly the first time ever that the capitol has allowed any group to change its public facing image in such a way for health awareness.

Florida Capitol - World Diabetes Day 2011

Manan Shah, who works for Novo Nordisk, shared with me that it took them several years to finally make lighting the capitol blue a reality here in Florida. They have been successful at lighting the capitol of North Carolina blue for the past two years. Like Manan, I hope that this trend continues to the point that every state in the union has their capitol turned blue on November 14 each year. Can you imagine if the capitol in Washington D.C. went blue for World Diabetes Day? That would certainly set an example for all of the states.

Go ahead, put it on your list of things to do. It’s on mine, as soon as I can get to Washington and start putting the bug in the ear of senators and state representatives on the hill.

I felt a swell of pride for the state of Florida on Monday night, and was so pleased and grateful that they made such a bold statement in support of people with diabetes as to allow the historic capitol building to change its image in such a profound way. Earlier in the day there had been a press conference on the steps of the old capitol, and one of the speakers was a 15 year old diabetes advocate with Type 1 diabetes who shared her story and made it clear that diabetes is not a disease that can be ignored.

And we won’t be ignored either. Next year, I expect to see even more cities, states, and people getting on board with showing their support for people with diabetes on World Diabetes Day…and every day.

Florida Capitol - WDD 2011 - A-Flizzle and Martin

A-Flizzle and me in front of the Florida capitol, blue for World Diabetes Day 2011

Disclaimer: The folks at Novo Nordisk did not pay me or provide sponsorship to Diabetically Speaking in order for me to say kind things about them in today’s post. It’s legitimate gratitude that I have for Novo Nordisk for footing the bill to turn the Florida capitol blue for World Diabetes Day and showing support for people with diabetes. I hope they have continued success next year. (Hint hint, wink wink, nudge nudge…do it again, do it again!)

Florida Capitol - WDD 2011 - Novo Nordisk

Me with Manan Shah (left) and Rich Ropp (right) from Novo Nordisk, sponsors for turning the Florida capitol blue for World Diabetes Day 2011

P.S. – Today’s blog post is my 100th blog post since launching Diabetically Speaking. That may not be a big deal for some folks, but I am taking it as an accomplishment, and proud that I was able to share something as important as World Diabetes Day as my 100th blog post. Thank you all for reading, and for your continued encouragement. Now here’s a gratuitous picture of a 100.

BG 100

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

To Boldly Go Where No PWD Has Gone Before

Elevator Speech

National Health Blog Post Month, Day 14: Elevator blog. If you were in an elevator with someone and they asked you about your blog, what would you tell them?NHBPM_2011_Day14

My blog is my perspective on living with diabetes, including random nonsense, diabetes-related acronyms, and as much humor and entertainment as I can muster. The goal is to help people with diabetes fill in the gaps between the clinical and the unknown, encourage a sense of community, and make sure that no one ever feels alone with diabetes. And to boldly go where no person with diabetes has gone before.

To Boldly Go Where No PWD Has Gone Before

Today, November 14, is also World Diabetes Day. Landmarks around the world are being lit blue tonight to honor people with diabetes and to help raise diabetes awareness. Join me in wearing blue today, take someone with you to a World Diabetes Day event, and help show the world that despite the challenges of living life with diabetes, people are able to thrive with this disease when they have access to proper medications and treatments. Insulin is a blessing to all of us with diabetes who need it to stay alive, and we are immensely grateful for it, but it is not a cure. WE NEED A CURE!Diabetes Blue Circle

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month