The Plan to Fix the Problem

So the past 6 to 8 months have been somewhat of a struggle for me. I've been laying down on the job, so to speak. Diabetes burnout takes many forms, but for me it's been nagging and ongoing in a way that I'm done dealing with.

As most of you know, my blogging has taken a back seat to other things in my life. My time on twitter (at least my "diabetes" account) has been less and less. This is an outward sign of what's been going on my in my head for a while.

I don't really feel like dealing with diabetes. I do it. I wear my cgms and my insulin pump. I count carbs (most of the time). I test. I keep juice w/ me in case of a low. I don't mess around. HOWEVER, I've been paying less and less attention to the little things. It's like I went from micro managing to just....managing.

Sure, you can survive on managing. You can stay out of the hospital. Stay relatively healthy. But is it good enough? Not for me. And it's time to stop.

My kicker happened this week. I had an appointment at my diabetes clinic with my nurse practitioner. They did my a1c again. And for the second time in 12 months, my a1c was over 7. I don't like to compare numbers. I don't like to make people feel bad (or feel bad myself). But for me, 7 is my stop point. Since I started pumping insulin 6 years ago I've had only 3 a1c results that were 7 or above. Like I said, this isn't to make anyone feel bad, but this is MY standard (remember that your diabetes may vary).

After having a very successful meeting with my nurse practitioner, we made a plan. My biggest problem of late has been depending too much (sometimes always) on my cgms, instead of confirming with blood sugar checks. Another large problem is snacking or eating and bolusing (or SWAGing) on what was on my cgms, instead of testing.

Solution: a temporary hiatus from cgms. Mostly to force myself to test my blood sugar more. Yesterday was my first day without cgms. I usually have a day here and there that I go without. Today though was my bigger test (no pun intended). Day two without cgms.

Since I'm more out of practice with regular testing of my blood sugar (not just before meals), I've set several alarms on my insulin pump to remind me to test. It's helped me. Last night, I set my phone to alarm me around 2:30 am so I could do a middle of the night test. Tonight, I'll do it again.

I live alone and I FULLY believe that cgms can save lives, including my own. But much like it can save my life, I also believe that it can be a downfall, if used incorrectly. And that's what I've chosen to go off of my cgms for a little while. At this point, I'm only thinking a few weeks. Maybe around two or three weeks.

At that point, perhaps I'll find myself less reliant on my cgms for major information, and more used to having it used for the reason it was intended: to show me trends and warn me before lows and highs so that I can test and treat accordingly.

So, I ask for your help. Send prayers for me, since living alone with diabetes can be scary at times, and even more scary without cgms. And send me strength to put myself back where I need to be so that I can go back on my cgms AND get my a1c back in the range that I feel most comfortable in.

My favorite part about my appointment at my diabetes clinic, however, was a quote on the wall in the nurse's office. A quote that I believe all of us should live by and that I've taken to heart when dealing with this time in my diabetes life:

Never discourage anyone...who continually makes progress, no matter how slow. - Plato

I think we should all live by this quote, as well as all of our health care providers. The fact that this was on the wall of my diabetes clinic lets me know that they are NEVER going to berate me for my current status in my health, but will only encourage me to work harder. 

Having My Fears Calmed: The Eye Appointment

This post is actually way, way overdue. Back a couple of years ago there was bleeding found in both of my eyes. The thing that every person with diabetes dreads hearing. I was determined to get a second opinion for a couple of reasons. The biggest one was that I'm paranoid. Bleeding in my eyes is something that I have dreaded for years. When they found it, I wanted to be sure that everything was really as okay as my eye doctor said it was. The fact that he was an optomitrist and not an opthamologist was also an issue with me.

But, I put off seeing an opthamologist for a year. Mostly because I was scared about what he would say. But I did it, and the opthamologist set my mind at ease about how my eyes were progressing (they weren't getting worse) and about what the future might hold (the bleeding could stay exactly the same for years before any more progression shows up). And then he told me that it would be find to continue to see an optomitrist once a year unless I noticed a change in my vision.

Back about a month ago was my yearly eye appointment and I went back to the optomitrist this time. The thing about my optomitrist, who I'll call Dr. Y for "young", is that I went to school with him. He is younger than me. He was always a nice person, from what I remember, but I had some mental issues to deal with in regards to trusting him. It's wrong of me. It makes me an ageist, I suppose. But it is what it is.

This most recent visit really put my mind at ease when dealing with Dr. Y. Dr. Y put my mind at ease. I talked to him about going to see the opthamologist (who is with the same practice, in a different town). I talked with him about my diabetes control (and lack of in college). We talked about the specific areas of bleeding in my eyes.

And then he took pictures of the back of my eyes. When he was done, he didn't put them in my file and send me on my way. He sat down with me, showed me exactly where the areas were. How they related to my vision. Which areas were of the most concern and why.

I'm not sure if he realized it, but by taking the time to SHOW me what he was looking at and explaining it to me, Dr. Y won me over and put my mind at ease all at once. If more doctors (regardless of age) took the time to talk with their patients the way Dr. Y did with me, we'd have a better health care system all the way around.

The final score: my eyes haven't changed in the past couple of years. The bleeding is there, but doesn't appear to be changing. Yearly visits are okay for now. And the standard "check in if anything changes" was the final prognosis. I feel I can sleep easy and breath deeply and smile.

Instant Friends...just add water (or coffee)

I've never been exactly good at meeting new people. I tend to be slightly awkward and uncomfortable when it comes to people I've never met before. I've gotten better in recent years and I owe a lot of thanks to the D-OC for that.

The thing about meeting new people online is that the instant awkward meeting is almost nullified by the safety of the internet. We get to know each other before every meeting each other. Each time I've been blessed to meet someone from online in an offline setting, there's no awkwardness. Just instant friends.

A little over a week ago I was blessed to get to meet another person from the D-OC. Victoria Cumbow is a fellow blogger and tweeter that I've gotten to know over the last year or so.

Through our online interactions I discovered that she grew up not too far from where I did (a little over an hour away) and that we both travel to Nashville on a fairly frequent basis.

We tried to meet up a few months ago, but it fell through, but when Victoria knew quite a bit ahead of time about an appointment in Nashville, I immediately requested the day off from work so that we could get together. We met up for coffee and breakfast and then, after Victoria's appointment, met up again for lunch and shopping.

I never seem to run out of things to talk about with d people, but with some, there's a more instant connection. Perhaps it's because we're close to the same age. Perhaps it's because we were raised in the same area of the country and state. Perhaps it's because we share similar religious beliefs. Or that we have a similar sense of humor. Victoria and I fell into an easy and almost instantaneous friendship that was planted in diabetes, but rooted in so many other things.

I love when diabetes isn't the center of a conversation, but can still happen naturally. That always seems to be the case with my friends from the D-OC. And a day with Victoria was no different. It wasn't unusually for diabetes to creep into the conversation, but it didn't happen often. We shared other things and talked about other things. But when diabetes did come up, it didn't have to be explained. It just was.

Side note: If you get the chance to meet Victoria, do it. She's a blessing and a light in the D-OC and in life.

Diabetes Alert Day

Today is Diabetes Alert Day. What's that? Well, it's a day that is celebrated (??) once a year. The American Diabetes Association, and other around the world, encourage people to take the Diabetes Risk Test. This test takes several things into consideration (family history, weight, health, etc.) and determines if you are at high, moderate or low risk of developing diabetes (specifically, Type 2 diabetes).

If you had a chance to delay or prevent the diagnosis of diabetes, would you do it? I know I would have. With Type 1, I wasn't given a choice.

I encourage people to go take the Diabetes Risk Test and then discuss it with your doctor. A chance to live a healthier life is in front of you. Take the chance.

Along those same lines, oftentimes (actually MOST of the time), the media can completely misconstrue diabetes, it's types, causes, and other things. It's something that is a constant battle for ALL people living with diabetes.

The Diabetes Advocates is a group that I'm very proud to be a part of. A press release issued this morning is just a public way of reaching out to the media to help them "get it right" in regards to diabetes. Below is the press release and information on how to get in touch with knowledgeable people who can help be sure that any media reporting is done correctly.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Diabetes Advocates Offer Assistance in Accurate Reporting in the Media

”We want to help get it right,” states diabetes advocacy group

Tuesday, March 27, 2012 (BERKELEY, CA) – Did you know there are more than five different types of diabetes? If your knowledge of diabetes is defined by what you hear and see on the news or in movies then you probably don't.  Diabetes Advocates, a nonprofit program made up of influential members of the diabetes community has launched a media outreach campaign, designed to assist the media on all things diabetes.    

Kelly Kunik, a member of Diabetes Advocates stated: “Today is Diabetes Alert Day in the US and we are trying to stress to all media sources that more due diligence is required on everyone’s part when reporting on diabetes. We want to help all sources ‘get it right’ but also stress the importance of explaining the differences among ‘all things’ diabetes.” 

Despite the fact that media outlets are reporting on diabetes more than ever, the condition is still widely misrepresented and portrayed as only one disease, when in actuality, diabetes is made up of several different diseases (type 1, type 1.5 LADA, and type 2 being the most predominantly confused). By emailing the organization at media@diabetesadvocates.org, reporters can quickly fact check, get suggestions and have a real-time conversation with the Diabetes Advocates to ensure the accuracy of their articles. The Diabetes Advocates can also serve as sources for reporters. 

With representation from the Screen Actors Guild (SAG), American Federation of Television and Radio Artists (AFTRA) and Actor’s Equity (AEA) within the organization, the Diabetes Advocates can also serve as information sources to entertainment outlets. Entertainment outlets looking for information on diabetes can email the group as well.

“Our goal is to stop being reactive and start being proactive,” said Kunik. “When a story with incorrect information is published, the damage is done. By making ourselves available to media and entertainment outlets, we are seeking to be part of a solution.”

ABOUT DIABETES ADVOCATES

Diabetes Advocates is a not-for-profit program run by the Diabetes Hands Foundation. The program combines the resources of its members to do activities to better educate the public about all aspects concerning diabetes. For more details, visit: www.diabetesadvocates.org.

Diabetes Camp Letter

In the summer of 1990, when I was 9  years old, I attended the now defunct Camp Liwidia. I remember a lot of things about camp. Very few of them pertaining to diabetes. I remember on camper in my cabin having a low in the middle of the night. I remember that all of the camp counselors had fanny packs full of test kits and glucose tabs. I remember group testing and injecting before meals.

The envelope the letter was mailed home in.

Other than that I remember normal things about camp. I remember making beaded bracelets and giving mine to my counselor because I liked her so much. I remember learning to kayak on the lake. I remember the campfire songs and the talent contest in which my group lip-synced to New Kids on the Block. 

Sealed with a Mario sticker!

I do remember thinking that I had never met another kid with diabetes and how wonderful it was to be surrounded by other kids with diabetes. It was special. And even in my little kid mind, I knew that.  

Written in pink hi-liter

The best part about camp was running across this letter I wrote home to my parents. This is what it reads:
"8-12-90 Dear Mom and Dad,

Its gerat at camp. wear going canoeing tomrow. I can't wait. I love you both.
Love,
Cara"

Roughly translated: Dear Mom and Dad, It's great at camp. We're going canoeing tomorrow. I can't wait. I love you both. Love, Cara.

I still kind of stink at spelling. :)

As a child, my parents were only able to send me to camp twice. It's expensive, as most of us know, and after my parents divorced it was too much for them to budget, I'm sure. As this year is slipping into summer quickly, I suggest finding a child to help send to camp. You can find a camp near you and donate to their scholarship fund. Help a child with diabetes not only fit in, but feel completely normal, for at least a week.



MTV True Life - I Have Diabetes

Wow. I just spent the last hour watching a much anticipated episode of MTV True Life. Months ago (maybe even a year ago?), MTV put out a casting call for people living with diabetes. They made it sound....depressing. And very much T2 oriented. After many emails to MTV, they rewrote their casting call and made it more universal. And slightly less depressing.

Of course, none of us actually thought that they might get it right. I'm calling it a draw. Some stuff was a really frank look at life with diabetes. Other things, I feel, were grossly misrepresented.

The show centered around three young people. Kristyn had to move back in with her parents after her health care costs got out of control. From what I could tell, she probably didn't have insurance. Or not good insurance. She was working two full time jobs, getting very little sleep, and paying for a new insulin pump on a credit card because her old one died. I feel for the girl. I've been without insurance. I don't know that my body could handle two full time jobs. I need my sleep too much.

I feel for Kristyn. She seems like a sweet girl. But diabetes is an expensive disease. Like I tweeted during the show, diabetes is expensive with GOOD health insurance. Without it... it's nearly impossible to afford.

Jen was a young girl (19, if I remember correctly), who was pregnant. She said that she'd gone to the emergency room because she felt sick and found out she was pregnant and had T2 diabetes in the same day. Immediately I wondered (and tweeted) if she was really a T2. Some people who are slim do get T2 diabetes. But with someone as young as Jen, and with a pregnancy, shouldn't doctors have checked for T1 anti-bodies? I think so. Instead, this girl spent months on many different pills trying to control her diabetes during her pregnancy.

Her doctor seemed more into scare tactics than anything, telling her if her blood sugar was too high that her baby would die. Jen ended up on insulin before the end of the pregnancy and the baby had to be taken early because he was too large. Diabetes related? Maybe. But from what they showed and made it sound like, it could have just been that the baby was broad shouldered. A friend of mine had to have her son taken by c-section because he was large. There was no diabetes involved in this.

At the end of the show it stated that Jen's diagnosis had been changed from T2 to T1 because she was "no longer producing insulin." Um, sounds to be like the had a T1 (or LADA) patient that struggled through her whole pregnancy more than she ever would have had to have struggled than if they'd just diagnosed her correctly the first time.

Matt was a college student who liked to drink. It made it sound like that he (and all diabetics) weren't supposed to drink at all. It also made it sound like he never took care of himself. I do have to say, I think Matt had the most supportive people around him of all of the "cast". He had friends who worried about him. People who urged him to test while drinking. And a doctor that told him it was okay to drink, but to be careful and have people around him that new what to do if he was acting funny.

His A1c had apparently gone up to 8.something from a previous visit of 7.4. The doctor was honest that they wanted a 7. But I think that both those numbers are okay for a person in college. Sure you'd like better. But when they were talking about it, I expected him to go in and find out his A1c was 12.1 like mine was one time in college.

One thing that really bothered me about the Matt segments was that they only showed him check his blood sugar once and it was over 400. That's something that (obviously) isn't a norm for him, or his A1c would have been way higher. I think this kid might have gotten a slightly bad wrap. While I don't encourage binge drinking, or drinking all the time for ANYONE, I think that you can drink responsibly as a diabetic and do it in such a way that doesn't totally compromise your blood sugar levels.

If Matt spikes when he drinks, should he never drink? I don't think so. I spike when I eat pizza. It doesn't mean I NEVER eat pizza, just that I do it only occasionally and that I'm ready to bolus the heck out of it so that my blood sugar doesn't linger in the high areas.

Either way you go about it, they could have done way worse on this show. I hate that they showed only negative things, because there are so many positives that can happen with diabetes. But I'm glad that they didn't bring in people who were not taking care of themselves at all and/or had one food in the grave.

MTV could have done better....but they could have done worse.

I rate this show a C+.

You can read updates on MTV's website about how all three are doing now.

And I hope that Jen, Kristyn, and Matt find the D-OC. We can help! :)

A Million Little Things

A new year is upon us and I'm sad to say that in the past month I've been rather lax in keeping up with my diabetes blog. However, I have had a day today. A day I'd like to share with you.

For the past two days my blood sugar has been running almost perfectly. I've gotten high predictor and low predictor alarms, but I hadn't actually had a high or low alarm in almost 36 hours. I have NO idea how it happened, but it did. Perfection never really lasts though. I think we always know that.

This morning I got up and took off to work. I usually don't eat breakfast until I get to work so it wasn't until I got there that I realized that I'd used my last test strip for my morning test. Strike one.

Okay, with steady blood sugars for nearly two days, I figured that I could make it until lunch w/ my fairly accurate CGMS. I'm set, right?

Wrong. About two hours before I was set to go to lunch, my CGM 3 day time limit was up. Which means I needed another blood sugar test to recalibrate. Um...uh oh.

So, I think I'll try my best to tough it out until lunch. It's only 2 hours and Lord knows I've gone two hours without testing my blood sugar before. Two hours is nothing.

Except when about an hour before lunch I started to feel low. Uh, oh. I can't drive home to get strips, so I check for a juice box in my purse...only to find I don't have one. Crap.

I make my way to the next cubical and eat a couple of handfuls of my co-worker's skittles. And wait.

By the time I got home for lunch, I'd rebounded to almost 200. And I spent the rest of the day being exhausted from the low, and somewhat sluggish.

Now having strips or even having the juice box wouldn't have prevented the low, or the rebound. But having one little thing go wrong is bad enough, but when it's a million little things it ends up being an extra hour at work on a Friday night to make up for all the work I couldn't get done today.

Diabetes can be easy. For about 5 minutes at a time. Something always comes up. A high. A low. A missing juice box. A needed reset on CGM. Sometimes they all come up at the same time.
 
Today was one of those days.

Wego Health Activists

Something's afoot in the online community. Too often I think we don't get enough recognition for the things that we do, both online and off. Wego Health is hosting the Wego Health Activists Awards 2011.

YOU can help out by nominating people in your community who are making a difference as a health activist. This is not just relegated to people that have or care for people who have diabetes. It covers all health conditions.

The categories listed are:

Rookie of the Year

Best in Show

Paperboy Award

Health Activist Hero

Advocating for Another (best parent or caregiver)

TMI Award

Hilarious Health Activist

Offline Crusader

Best Affirmation Post

Best Kept Secret

Want to nominate? Come on, you know you do! Click below!



Christmas Came Early

Back around Labor Day my transmitter for my MM cgms cracked after almost 4 years of use. I knew I would have to get a new one, but to satisfy my burning curiosity, I trialed the Dexcom first. Then I called MiniMed only to have them tell me that my insurance company wasn't going to pay for a new one. They didn't "cover it." Um. Okay. They did in the beginning. And had been paying for my sensors ever since.

They also cover the sensors for a co-worker's husband. Why now?

The lady I dealt with at MiniMed was amazing (and probably got sick of my incessant calling). She said they wanted a pre-approval first. That can take up to 30 days. I had borrowed a transmitter from a friend who had an extra (not sure how that happened) and was using my own sensor, but I was running out and my insurance wasn't paying for the transmitter/system OR the sensors.

I got blessed by T1 friends locally and by a friend in the D-OC who sent me some sensors in hopes it would get me through until insurance came through with a decision.

Friday I got a letter from my insurance saying they had deemed it "medically necessary" but that it still might not be paid. But from everything in the letter, it looked like I met the requirements. I called MiniMed and on Monday they told me they'd talked to my insurance company and that my insurance had no record of approval. The last thing the insurance had in their computer was dated November 22.
The letter from my insurance company was dated November 23rd. Sounds typical, right???

Anyway, MiniMed let me fax the letter, they looked it over and I literally had my new cgms system AND sensors the next day!!!

It was like Christmas came early for me!

Hey Pancreas!

Well, I've been majorly slacking in the past week or so on blogging. It's sad that it is Diabetes Awareness Month and I'm slacking, but my only excuse is that I've been sick for about a week. I was out of work on World Diabetes Day and had to make a lovely visit to the doctor to get some meds. I even lost my voice that day! Crazy.

I'm only now getting back to myself. As a peace offering to my lovely readers, I offer you this amazingly hilarious video. My best friend shared it with me and I laughed so much! I posted it on my Facebook page last night and I know it's already making the rounds in the D-OC, but for those of you who've missed it so far, I wanted to give you another chance to see it.

Don't laugh to hard. And try not to get the song stuck in your head. :)

Diabetes Awareness - Myth #2

Diabetes isn't Deadly

As usual, I'm behind on my blogging. I tend to take things going on in our community and think about them, read what others are saying and then think some more before I write. One of the biggest myths that I know of about diabetes is that diabetes isn't deadly. If you ask your average person on the street, they'd tell you that as long as you take your medicine and eat well you'll be fine (that's if they don't just tell you to lose weight and quit eating sugar).

The truth of living with Type 1 diabetes is that without insulin I will die. Anyone living with T1 will die if they do not take insulin. But did you know that even though you take insulin, you can still die as a direct result of diabetes? I'm not talking about long term complications that end up in eventual death. I'm talking about at any moment, at any time.

I wrote a little bit about it when there was a young girl who died in her sleep from undetected low blood sugars. It has become one of my most popular posts ever, but the truth of it is in the post. Basically, no matter how much we do right, sometimes it's not enough. The insulin we take to stay alive can also take our lives.

If it were as easy as a set amount, or a set insulin to carb rations I think none of us would worry. But so many other things factor in. Stress, exercise, lack of exercise, change in routine, illness, hormones, and even changes in weather/seasons can all have an effect on blood sugar. And most of the time these variables are unpredictable at best. Then add in "hidden" carbs, the effect of fat on digestion, the occasional "bad" batch of insulin....well, you might be starting to get the picture.

Diabetes is with me every minute of every hour of every day. It's with me always. And in that, I don't get the chance to say "time out" when things in my life are getting crazy. I live by myself. This is something that most 30 year old women would think nothing about. I can take care of myself....right?
But the truth is that with tight blood sugar control (i.e. as close to non-diabetes levels as possible), you deal with more low blood sugar levels.

So the fact remains that I could die in my sleep. It is possible. It's a scary thought. I don't fear being dead. My faith in Jesus tells me that being dead isn't the end. But the thought of dying does scare me. I don't want to leave before I've finished whatever I'm supposed to do in my life. I have goals to accomplish and things to do that make the thought of diabetes stopping that a terrifying thing.

This past week JDRF took out an ad in The New York Times calling the FDA to action in regards to approving something called a Low Glucose Suspend function on insulin pumps. An insulin pump is kind of like an IV. Even if my blood sugar is low, it continues to give insulin (which in turn, continues to lower the blood sugar levels). With a low glucose suspend, the insulin pump would automatically (without my help) turn itself off. This could save lives, but the FDA has yet to approve it, even though it is now widely available in Europe. Below is the ad:

1 in 20 people. There has been argument over how accurate that number is. But all I have to say is this: Piper could die in her sleep from a low blood sugar. She's a child. So could I. I'm an adult. Any person who takes insulin for their diabetes, regardless of age, race, gender, religion....any of us could die. The fact that there is a possibility of death (regardless of the statistics) is too much. I DO NOT WANT TO DIE IN MY SLEEP. Not from a disease that I work so hard to live successfully with. Not a disease that's been with me longer than I can remember.

The fact that there is a child in that ad draws attention. I understand why JDRF uses children. It's a great marketing tool. It's extremely effective in touching people's hearts. The thought that a child could die NEEDLESSLY will bring action about. However when I look at that JDRF ad, I see this:

And the faces of all of friends who are daily living with diabetes. The myth is that diabetes isn't deadly. The truth is that DIABETES KILLS.
   

Burnout - Mara's Story

A couple of years ago I was blessed to meet Mara on one of my many trips to New York. Even though she's not a blogger, Mara and I have become facebook friends and have stayed in touch. I love that she has agreed to write something for my "Your Voice" project and I really feel like it fits perfectly into Diabetes Awareness Month. I would venture to say that anyone living with diabetes has suffered what we call "burnout" at least once (most of us many more times than that).

This is a big reminder to people that living with diabetes is a full-time job and that it can often times be overwhelming (even when you've lived with diabetes for many years). Here is Mara's story and I'd like to thank her for her gracious submission!


When Cara mentioned that she was seeking “non D-bloggers” to fill in some spots while she took a hiatus due to diabetes burnout, I jumped at the chance. Anyone who knows me via Facebook (either in “real life” or just through the DOC) knows that I am not shy about posting about diabetes. Usually referred to by me as “Big D,” diabetes becomes the focus of many of my posts, which are often vents or questions/requests for feedback from other “D-peeps.” (I put these things in quotation marks because I’m not really sure if other people use these D-nicknames (sorry, “D-nicknames”) or if these are just pet names I have for it in my head!)

So, when Cara told me to go for it, write a guest post, I was trying to think of what I’d write about. This was almost a month and a half ago, a few days before my 20-year Diaversary (Oh come on, I know we all use that one!). I was thinking I’d write about all the things I’ve accomplished in 20 years in spite of the fact that I have diabetes, and because I have diabetes. I was thinking about referencing how I feel that having diabetes as a kid, I’d been forced into independence and self-sufficiency at a young age, and how that just transferred to other areas of my life. I thought of mentioning how through the DOC and in-person events, I’ve met so many other people living with Type I Diabetes for many years like I have, and how wonderful they have been as support, even if I’ve never met them and just read their blog posts and go “Yeah, ok- whew- somebody gets it!” I also thought of writing about how proud I feel that I went through 4 years of college without even knowing that a pump existed, and these days I work a crazy schedule and manage to manage everything, no matter how many other deadlines I have.

You feel a “but” coming, dontcha. I feel it, too. I felt it just at the point when I had all these ideas in my head for my guest post on this blog. That “but” came in the form of one of the most erratic and stressful times of roller-coaster fluctuations I can remember in a long time. I’m still struggling with it, have an endo appointment in a couple weeks, and I know, like all the times like in the past, it will work itself out. But, I felt the irony of not being able to write a guest post to help Cara out in her time of “D-burnout” because I myself was now feeling it. The truth is, I AM proud of my independence, what I’ve accomplished, how incredibly healthy I am despite having a crazy disease like diabetes.

But, I hate it. I hate when I feel one way when I’m low and another when I’m high and when my body is just tired- TIRED- from days and days of ping-ponging between these too. I hate that I work long, crazy hours at my full-time job and have diabetes as my second, unpaid job (one that I did not volunteer for). I hate that I do everything right and sometimes it still goes all wrong. I hate when I eat an entire meal and stuff myself and then realize I’ve miscalculated and have to eat half the kitchen to fix it (which will of course require a correction 3 hours later…). I hate that I bring tons of supplies along when I won’t be home for many days and my high sugar makes me eat through them and send me into panic. I hate that I’m more than ever in need of a CGM but my insurance company disagrees and considers this crucial piece of diabetes management a luxury (um, are there any luxuries you know of in diabetes?!) And I hate that I can’t help out other D-peeps who are in need of comfort and advice because I’m so burnt out myself.

So, why am I writing now? I thought I couldn’t write about diabetes when I was burnt out. I had emailed Cara to say that I didn’t think I could do it at the time because of my burnout. And then I realized that sharing this with the diabetes community would relieve my stress and maybe some of yours. And you know what? It worked. I feel like I’m writing to a journal, and it feels good to get my frustrations out in writing (and I even saw that others blogged about the burnout, too). But, it feels even better to share my frustrations (and successes…) with people who I know at one time or another have felt the same thing. And, um, yeah – we should all be incredibly proud of ourselves. We’ll see what the next 20 years bring.

Diabetes Awareness through Performing Arts

Earlier this year I was blessed to see a wonderful musical that helps educate about diabetes. This musical, called Andy & the Beats, was written, directed, and starred a man living with Type 1 diabetes as part of his senior thesis/project for college. It was my luck that said college is only a couple of hours from me, so I made the trip and was very glad that I got to be a part of that.
I wrote about seeing the show and even at the time I saw it I thought, "someone needs to do something with this musical." It could be such an educational tool and has so many things about it that would be great, especially for families with children who have been recently diagnosed with diabetes.

After the short run, I hoped that there might be some more attention brought to the show....
Now that's happened. Andy & the Beats is in contention for the Pepsi Refresh Everything grant program. They are trying to get a $10,000 grant to help do another staging of this show. And with each staging and chance for this show to be performed, more and more people will be educated about diabetes.

You can help Andy & the Beats get this grant by voting HERE. You can vote once per day. They are, at the time I am writing this, in 48th place. They need to be in the top 15 in order to receive funding. You can either vote by using your facebook account, or you can create a free Pepsi account and vote that way. All the information is on the page for Pepsi Refresh Grant. Each person gets 5 votes per day, but only 1 can be counted per entry, so go in every day and vote for Andy & the Beats.

We are a very large and very strong community of people living with diabetes online. I KNOW if we can get Disney to pull a certain episode of a television show, we can help Andy win this grant.
Please pass this information along and follow Andy & the Beats on facebook.

Blue Fridays

For Diabetes Awareness Month, I will be wearing blue every Friday in November. This entire month of November is about raising awareness about diabetes and helping to break stereo-types about diabetes. As an advocate for diabetes I blog. I talk. I learn. And this month, I wear blue.

The Invisible Man (Woman)

Here's another "Your Voice" post from my good friend Sherry. She is such a blessing and has a beautiful way with words. I've been holding onto this post for a while, but I thought that it was perfect for Diabetes Awareness Month considering the insight it gives into having a low while in public. For each person it can be different, but I've had the same scary feelings that Sherry speaks about in her post.

For now Sherry doesn't blog. Instead, I let her post here whenever she feels like she has something to day. However, I think I'll eventually turn her to the "dark side"...it just might take a little while. ;) You can find Sherry on facebook.

I sometimes wonder if I am made of plastic. Not visible to the human eye. Sometimes this is frustrating.

Here’s the scene….I’m in the local mall, scurrying around preparing for our upcoming wedding. (our 25th anniversary wedding…happening in a mere two weeks, but that is another story.) The ring bearers need matching shirts. My husband needs a pink necktie and my son needs a yellow one, but I won’t know what shade of yellow until I see the dress the bridesmaid has. I call her on my cell phone, but she doesn’t answer. Ties are in abundance in these big stores, but try looking for a certain color and you have a challenge that is daunting! But I digress….

I’m bustling about the department store, pushing my youngest son in his wheelchair. He and his chair together weigh more than I do…plus we have the usual profusion of diaper bags, purses, feeding supplies, packages, etc. hanging off the back of the chair.

Giving up temporarily on finding the right colors of ties, I meander over to the little boys section. I’m delighted to find matching shirts, snatch them up and pray they will fit, and proceed to the checkout. There are several people ahead of me, and the computers are acting up, providing quite a tizzy among the workers. All of a sudden, I realize I feel low. Odd, since it’s only 11:30 a.m. I brush off the feeling and continue waiting. A few minutes later, I realize I probably should see what is going on in the blood sugar department. I slink off behind a rack of clothes since I don’t want to do the finger poking and bleeding routine in front of the innocent children wandering around. After all, this is the children’s clothing department. My meter confirms a saucy little 55, but I feel about 25. Glucose tablets come out amid the curious stares of the children, wondering why this lady is sitting on the floor eating candy. No one above age 12 notices the lady sitting on the floor.

After getting up and paying for the shirts, I make my way to the food court on the opposite end of the mall. The road looks terribly long to me. I finally can’t push or walk anymore so I sit down. My little 9 year old son, in his wheelchair, sits beside me. He is only about 10 months old mentally, but he reaches out his one usable limb, his right arm, and tries to touch me. I pull his chair closer and lay my head on his chest. He proceeds to hold me tight and rub my back. It feels wonderful to be touched. I don’t know how long we sat this way, but when I opened my eyes, I realized there is an ice cream stand right in front of me. Two middle aged ladies are working there, chatting and staring at me. They say not a word to me.

I finally feel like I can walk so I proceed to the food court and try to purchase some food. This requires more thought patterns than I currently have in my brain, and I discover that I left my change purse back in the children’s department. Fortunately I have some money in my purse and purchase food, but by now I can’t remember how to eat it.

As I sit there amid dozens of people, I lay my head on the table beside the food. I know the food will help me, but only if it enters my body. I can’t seem to remember how to put it in my mouth. Once again, I figure I must be made of plastic. No one sees me. No one thinks it’s odd that a lady is lying on the table, not eating the food in front of her. I remember feeling very lost…..like a little child in a crowd with no one to guide me. I feel vulnerable and sad. I wonder why no one cares.

Relating this story to my husband later that evening, he says that he thinks people are afraid to get involved. Afraid to help someone in need because of a lawsuit. I tell him, “How can someone get a lawsuit for giving a person food?” He says people just don’t know, they don’t understand Type 1. Right.

Guess I’ll just continue to be plastic. Invisible. Or maybe ladies lying in the floor at the mall eating candy are commonplace. I’ll have to look next time I’m there shopping. Maybe I just missed them because I was low.

Diabetes Awareness - Myth #1

People with Diabetes Can't Eat Sugar

I have had diabetes since 1986. I was 4 years old. Things were so different at that time when it came to diabetes care. I believe that this time period (and the many years before it) were the reason that many people believe that people with diabetes can't have food or drink that contain refined sugar. At that time, the understanding of how foods effect blood sugar were very different than what they are now.

Here's where the myth busting comes in:

I CAN EAT SUGAR

Yup. You read that right. I have Type 1 diabetes. I take insulin to stay alive. And I CAN have sugar.

A healthy person eats all types of food. The foods that cause blood sugar to rise are foods that contain carbohydrates. There are other things that can cause blood sugar to rise, but I'm only addressing on myth at a time.

If you look on a food label, there are things broken down. Fat, Calories, Sodium, Carbohydrates. At a very basic level, foods that have carbohydrates are things like grains, fruits, and sugars. When a healthy person eats something with carbohydrates, their body produces insulin to turn the carbohydrates into energy for the body.

A person with diabetes either doesn't produce insulin, or the insulin is not used properly by the body. Because of this, people with diabetes have to take insulin (for those living with Type 1 or Type 2) or pills (for those living with Type 2) to help their body turn the carbohydrates into energy.

It is true that a person living with diabetes may chose to refrain from some types of carbohydrates in order to control their blood sugar levels easier, but overall, a person with diabetes can eat any type of carbohydrate as long as there is insulin (or other medication) to cover the body's need to turn the carb into energy.

A fact that many people that do not live with, or care for someone who lives with diabetes is that a regular sized snickers bar has 35 grams of carbs. There is right around that same amount of carbohydrates in two slices of regular loaf bread. Obviously, for anyone with or without diabetes, the bread is probably a healthier choice. But the fact remains, that I would give the same amount of insulin for either of these items.

I won't get into all the boring details, but some carbohydrates do digest and effect the blood sugar differently. And it's different for every person. I typically avoid pizza and cereal because I have a harder time covering these types of carbs with insulin. I have a friend who chooses to avoid pasta. I try to cut down on my rice intake.

Each person living with diabetes should eat in a healthy manner...as should the person who does not have diabetes. Sure, you shouldn't eat sweets all the time. No matter who you are. But don't look at a person living with diabetes and tell them that they shouldn't eat that cupcake. If treating yourself to a cupcake every once in a while is okay, let the person living with diabetes decide if it is a good time for them to treat themselves.

We'll make a deal with you: You don't tell us what to eat, and we won't tell you what to eat.

And now you know the truth: People living with diabetes CAN eat sweets!

Diabetes Awareness Month

Today marks the first day of Diabetes Awareness Month. This month there are activities going on all over the world to bring awareness to diabetes and the need for a cure. This month I am going to be posting quite often. Many of the posts are going to be (hopefully) dispelling common myths about diabetes. Other times I will be posting something about my life and living with diabetes. And other times, I will be putting up posts to go along with my "Your Voice" project.

If you have a myth you'd like me to cover, please comment or email me and I'll see what I can do. If you'd like to submit a post for the "Your Voice" project, please click at the top of the screen or HERE to get information about who can submit, how to submit before you email me your post.
Please remember that people live with diabetes every single day. It's a disease that doesn't go away. There is NO CURE for diabetes. Until God grants me my healing, or science discovers a cure, I will continue to live my life with diabetes Every Day, Every Hour, Every Minute.

Vloggy Simonpalooza

My vloggy tribute to Simonpalooza.



Caroline's vlog that inspired me can be found HERE.

Video of the D-OC meeting Simon at the airport in Kansas City



Video of Simon thanking Cherise

Dexcom Decision

I feel guilty for not getting this post up sooner. I've been busy, crazy, stressed, and uninspired. However over due it is, here's my post about the decision I made regarding the Dexcom trial.
Over the week that I trialed Dex, I was fairly happy with the results. They were pretty much dead on with what was going on (including matching, almost always, my MiniMed CGMS). There were some areas that I felt that Dex did have some amazing things going for it.

First off, it catches a turn around in blood sugars more quickly than the MiniMed counterpart. Secondly, they are FDA approved for 7 days. Much more than the 3 days that the MiniMed is. Also, the Dex does not have to be taped down 10 thousand ways to keep it on (I use two pieces of medical tape and two IV-3000 tape pieces to hold down my MiniMed).

Another thing I loved about the Dexcom was that I could put the receiver on my night stand next to my head and it I ALWAYS heard it alarm (it vibrates before beeping, and let me tell you, on a wooden nightstand it will wake me up). As I've talked about previously, I don't always here my MiniMed alarms at night.

But, then there were the down sides to the Dexcom. I didn't like that you couldn't see past results on the graph. You can only see what your most recent result is; the rest is only a graph. On MiniMed, you can scroll back through the numbers. Even though graphs are incrediably visual and helpful, sometimes I like to see an actual number.

Then there was the fact that it was a separate device to lug around. I had such a horrible time remembering to bring it with me. And if you happen to get so far away that you're out of range, you've lost the numbers/readings from that time period. With MiniMed, the transmitter stores up to 30 minutes of results and feeds it to the pump once you are back in range. Often times at work I am up from my desk and walking around my office. Sometimes I get stuck somewhere else for a while (20 minutes or so at times) in another area helping a client. If my Dex receiver is laying on my desk, it's lost all of those readings. One morning I even left the receiver at home and had to come back to get it after I got to work.

Honestly, separate device and all, if the readings were more accurate than MiniMed for me, I probably would have been more willing to switch to Dexcom, especially with the ability to hear the alarms at night. But, I decided to stick with MiniMed because there honestly wasn't a huge difference in readings for me (I've always had decent results with MiniMed) and I loathed having another device to lug around in addition to my meter, pump, phone, and mp3 player.

Here's my honest advice to anyone thinking about trying out either the MiniMed or the Dexcom: TRY THEM BOTH. And give them both a chance. If Dexcom already had their integration with the Animas pump, I might have actually made the switch. But for now, I like having only one device to deal with.

As with anything, Your Diabetes May Vary. I know a lot of people have horrible results with MiniMed's CGMS and do much, much better on Dexcom. I'm glad that you found one that works so well for you. But since they were both so similar in accuracy, it really came down to convenience for me. And MiniMed won out.

I would like to say that everyone I dealt with at Dexcom was amazing. From the first person I spoke with on the phone to the wonderful Dexcom rep that met me to get me started with the trial. These people truly seem to love their job and believe in their product. And I'd like to thank them for the opportunity to compare the two systems. It meant a lot to work that out for myself and see what was the best fit for me.

Simonpalooza NYC Style

This community that we have all created has become an amazing, wonderful family for us. I know that we realize that, but the past week has more than proved it. Our friend Simon (@STroyCrow) lives in Australia. More and more, we've had people from around the world entering our community and it's wonderful to see.

The man of the hour (or the week, as the

case may be).

Simon decided he wanted to come to the States. To see us. For months he worked more hours per week that most of us even think is possible. All to come visit us. So when I found out that he was making a stop in my favorite city in the world (New York people!!), I knew I had to go.

After a few bumps along my own planning, I made it to the city a few days before the actual Simonpalooza event. This allowed me time to meet up with some people who weren't going to make it to "official" event on Saturday. It also allowed me to spend some time hanging out with Simon BEFORE there were a million people around.

Some things I learned this weekend were that Simon is an amazing person (even though I think we all already knew that). He's got a huge heart and an amazing amount of determination. He wouldn't have been able to come to the U.S. without such determination.

Met with Jennifer on Friday since she couldn't make it to

Simonpalooza on Saturday.

I was also reminded how much this community is bonded. While most of us have never met, we are all friends. There were so many people I met for the first time at this meet-up (nothing like an Aussie to bring out the people that no one else can!). But just like it always is when I meet someone from the online community, it's like we aren't meeting for the first time. It's like meeting old friends.

Hanging out with these girls is never boring. :)

There were so many people there that I have met before. And seeing them again makes me realize how much I miss the face-to-face interaction with the people who have become some of my closest friends, and thankful that we have technology to keep us in touch in the times we are apart.

Two of my favorite people!

As I spent time with another friend with diabetes when I got back to Tennessee, she pointed out something that reconfirmed something for me. She said that those of us with diabetes have made something so positive out of a thing that can be so negative. Diabetes can be a truly devastating thing on so many levels. But things like the D-OC and the wonderful meet-ups in real life, and the knowledge that we have each other to lean on has really helped us put a positive spin on living with a chronic illness.

This picture was almost five years in the making!

I apologize for such a ramble filled post, but I'm still exhausted, having only made it home this evening. But know that this weekend possibly changed my life. It was unlike any other meet-up I've ever been at and I'm grateful and blessed to have been able to be a part of it.

This was a hug and run, since Kelly didn't arrive until

right before I had to leave, but I FINALLY got to meet her!