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.