Voices Raised

We've all been talking about the steps that we can take to become advocates, outside of just blogging (although that in itself is a lot). We've talked about so many ways, and there are people out there taking those steps. And it makes me proud. It also pushes me to do those things as well.

Last week, when MTV posted the casting call for people with diabetes for their show True Life, it was offensive in many ways. It's nice to know that diabetes is getting some attention, but the way it was worded was in many ways ignorant and worried many of us on how the show was going to be presented.

So, people in the D-OC did what I expected them to do. They e-mailed. They responded to MTV to let them know that living with diabetes wasn't the end of the world, but that it is a whole lot of hard work and can be very annoying. It's funny because I was so busy that I let a couple of days pass before I could write to MTV, but even without my help, the D-OC rang through loud and clear. 

MTV reworded their casting call and sent out form letters apologizing to all the people who e-mailed them. The best part about the form letter was the apology at the beginning stating that they got so many e-mails from people in the D-OC (though they didn't use that exact term) that they couldn't possibly reply to all of them individually.

Wow. I think that's the first time in my life that a form letter hasn't annoyed the daylights out of me. And yet again, the combined voices of the people in the D-OC made a difference. Sure, we still don't know whta the final outcome of the actual episode of True Life will be. But in the meantime, we let them know that we care. We care how it's done, we care how we are represented. And we care what they present to the world. And the listened.

How many groups of people can claim that they've had a part in causing a major network to change something? We did it with the Hannah Montana episode a while back (I did get in on the e-mailing Disney with that one!). And now with MTV. These are 2 of the largest networks in the country. That is something to be proud of. 

I am very proud of the D-OC. I am so glad that I'm a part of this community. I'm glad I have the opportunities to advocate for people with diabetes. And I'm glad to know that even when I can't, or don't get the chance to do so, that other people are out there speaking for me. 

The First Step in the Right Direction

Last week I wrote about not going to the endo, eye doctor, or dentist in wayyyyy too long. And I promised myself to get that problem fixed. In blogging about it, I kind of put a fire under my tail. It's one of the best parts about being a blogger. In a way, I think it helps me hold myself accountable. So thank you, D-OC, for holding me accountable, just by reading my blog.

I set myself a goal to have the eye appointment made by this week. And I did it. Yesterday I made my eye appointment for the third week in April. And while I was at it I made my dental appointment as well.

It's not perfect. But it's a start.

I actually wasn't sure I was going to get it done. Especially after my rant the other day about just being tired of diabetes. :/ But that's part of what made me make those calls today. I realize I'm tired. I realize I'd like a break. But I know that "taking a break," a.k.a. ignoring things about my diabetes, I'm only hurting myself in the long run. And it doesn't make the diabetes go away.

So, April is going to be my month that starts getting me back where I need to be. Taking care of myself so that I am as healthy as possible for as long as possible.

Stupid Mistakes

We all make them. When you’re a full-time vital organ, things become rote. Test, calculate carbs, bolus. When you’ve been doing the same thing over and over again for years upon years, sometimes you can even forget you’ve done it. I’m terrible to check my blood sugar twice in a row because I’ve forgotten that I’ve done it the first time.

One thing I’ve not done in years (in fact, it was 2005 if I remember correctly) is bolus, or give an injection twice. Sadly, I can’t say that anymore. Monday I was home for lunch and checked my blood sugar and bloused for lunch. Then I got my food out of the microwave and bloused again before I ate. It wasn’t very long before I realized it. But it was still too late to take the insulin back. :/ The bolus was done and I had twice as much insulin on board as I should have had.

So, I did what any good diabetic would do. I went to get ice cream. :) Talk about a good excuse. Honestly, if there had been a cupcake store in my hometown, I would have gone with cupcakes, but since there weren’t, a Blizzard from Dairy Queen did the trick. My blood sugar didn’t drop. And I had a very happy tummy.

My biggest issue in the whole thing was that blousing (and testing) has become so routine for me that I forget I’ve done it. I know I’ve been at this diabetes thing for 25 years. I’ve been pumping for almost 5 years now. And I know that because I do this everyday it is supposed to be “easy” or at least normal for me (and it is). But it also bothers me that it’s so normal. I wish that blousing and testing and counting carbs weren’t normal for me. I wish I didn’t have a need to know that information.

This post really started out just to tell you about how crazy I felt about double blousing. Instead it has turned into this: I’m tired today. I’m tired of dealing with diabetes. I don’t believe it’s burn-out. Just exhaustion. I don’t often get like this, but I’m tired of dealing with diabetes. I’m tired of testing and blousing and counting carbs and doctors appointments. And I’d just like a couple of days off. Is that so wrong?

But I’ll keep going because we all know there are no vacations with diabetes. My heart only breaks for the children who are dealing with these feelings as well. And I’m just praying that they won’t have to be sitting at 25 years and complaining about double blousing. That somewhere in some smart scientist’s mind, there’s a cure waiting. And that there’s the funding to make it a reality.

Journey for Control

Here's to knowing what you want, and trying to make a move to get it.

Several times over the past year I've noticed an announcement in my local paper about diabetes education classes. I've never called about them because, let's face it, after 25 years of living with diabetes, I know more than some medical professionals. At least when it comes to diabetes. But after all of the talk in the D-OC about being an advocate, I thought I might call to check on these classes. Even if I didn't pick up anything new, I might be able to help someone else, right?

So I called the number. It was strange because it was a toll free number, and I couldn't understand why, since the classes are held at the local hospital. When the computer answered it said something along the lines of “Welcome to Journey for Control. Please hold for a representative.” In fact, I called twice to be sure I got the name right.

I held. And I talked with a lady who was basically just wanting to take my name to register. But I had questions. I asked her if the hospital was the one putting on these classes. They aren’t. Merck is. I asked what the topics of the classes would be. She stated there were 3 classes. She listed them off to me, and I wrote them down. Sadly, I lost my list, but the names all sounded like the same topic. Basically getting control of your blood sugars, and topics about food.

I told her I didn’t wish to sign up at this time, but that I would let them know if I was interested. And then I got down to researching this stuff.

Apparently Merck has a program called Journey for Control. The website seemed to be focusing on Type 2 diabetes. After a little further research I figured out why. The only diabetes related product that Merck produces (that I could find), are two pills that help with T2 control.

Part of me thinks that I should have signed up for the classes anyway. To have a chance to introduce people to the D-OC and other resources that can help them out. But I have serious issues with attending diabetes education classes that are hosted by a company that deals exclusively with T2 patients. I’m not a T2. And I hate feeling excluded, or like people have forgotten that there are a lot of people dealing with T1 diabetes.

I’m not bashing Merck. I find it admirable that they are offering free diabetes education classes, taught by CDE’s in small, rural communities like mine. The program itself seems like something that would be a good start for people who don’t know what’s going on with diabetes, or for people who have been recently diagnosed and given little guidance by their primary care physicians (a common thing in rural areas), and no referral to an actual endo.

I guess I’m just feeling a little disappointed in the fact that I didn’t have a chance to go to something in my town and have a chance to share the wonders of the D-OC with people. Should I have signed up? Maybe. But I didn’t quite feel comfortable about it.

Getting Back on Track

Honesty is (almost) always the best policy. And truth is a way to let people know that just because we blog, doesn’t mean we’re perfect. It’s also a way to have people hold me accountable.
So here goes:
-I haven’t been to my endo in over 6 months.
-I haven’t been to the eye doctor in over a year.
-I haven’t been to the dentist in over a year.

I honestly don’t believe my diabetes care has suffered any (although I could be eating healthier and exercising). But the fact remains, that I’ve not had the professional medical care that I should be getting. And I don’t have a good reason for it. I’m very blessed with health insurance that covers almost everything I need. My co-pays aren’t terrible. It’s just been flat out laziness.

And like with most things, the longer I put it off, the easier it is to put off. And I’m hoping that by blogging about it, I’ll have the motivation to start getting this stuff done. Because by making my life with diabetes public, I’m forcing myself to do things that I should. Because I know that members of the D-OC will ask me about it. They’ll want to know about those appointments.

I’m going to start out by calling to get an eye appointment. My time frame: make that call in the next week. Ask me about it. In comments on this blog, on facebook if you’re my friend, and on twitter if you follow me. Keep me accountable.

Educate & Advocate

Why do we get so lazy when it comes to diabetes? Why do we let opportunities in educating people about diabetes pass by? I have a theory about this. With me anyway.

My theory is that I just don’t want to deal with diabetes. Not in a general sense. I deal with diabetes 24 hours a day, seven days a week, 365 days a year (and 366 days in a leap year!). Diabetes, while not always at the forefront of my thoughts, is something that always exists in my life. I don’t like people knowing all the literal ups and downs of living with diabetes because I hate the pity and sad looks I get from people.

So, what do I do? I hide it. I don’t hide my diabetes. People know I’m a diabetic. I don’t have a problem with that. But I hide the bad stuff. Sometimes I think people are under the impression that I have perfect control. But I don’t. I do what I can. I believe I have better control because I have the D-OC. In a totally indirect way, you guys keep me caring about myself and keep me on top of my health.

But, as I’ve gotten more and more involved in the D-OC over the last (almost!) 4 years, I’ve realized that the D-OC is more than just helping ourselves mentally with our lives with diabetes. In a way, we are the voice of all people living with diabetes. Even the people who aren’t a part of our community. More and more health care professionals are online, reading about the patients that they care for. More newly diagnosed diabetics (or parents of diabetic children) are searching online for information about their disease, and in the process finding our blogs. Blogs about people living with or caring for, people living with diabetes.

With that, comes a great responsibility. Sure, we are allowed to “fail.” We are allowed to have a “bad” A1c, or a bad week of rollercoaster blood sugars. Those are the responsibilities I am talking about. I am just now beginning to understand that it becomes our responsibility to advocate for people with diabetes. It’s our job stand up when we see people misrepresenting diabetes. It’s our job to educate people who don’t understand or who are presenting information about diabetes in a way that isn’t true.

Kelly Kunik famously tells her story about Halle Berry being the reason she started to blog. It was during the whole deal where Halle said she was Type 1 and weaned herself off of insulin so she was now a Type 2. :/ Kelly was so infuriated by this misrepresentation of diabetes and the types of diabetes that she started blogging (and making big wigs cry). And in the process, she has become a fantastically funny addition to the D-OC, and a wonderful (LOUD) advocate for those of us who live every day with diabetes.

During the blogger round table that they had a JDRF Government Day, and throughout the weekend, those of us who weren’t there were able to be a part of the action through Twitter and the hashtag #JDRFGovDay. That really lit a fire in my heart. I feel like I should be doing more. I need to be the one making the phone calls to let people know they are presenting information about diabetes incorrectly. I’m the one who needs to be blogging about the things that will matter to the people who are searching for information about diabetes that isn’t your typical “text book” information.

So, my goal is to see what I can do. What kind of difference can I make? I’m not a technical writer. I don’t “do” science. But I do have a voice. And I can share with people what I read. And I can educate people about Type 1 diabetes and what it’s like to live with diabetes. I want to become voice for people who live every single day with diabetes. I want people to understand that diabetes doesn’t take a vacation. I want to educate.

I’m not quite sure how I’m going to start out. But my pastor preached this Sunday about running toward your fears instead of away from them. So this is my first step. Advocacy has always been something that I’m been afraid to do. So this is one fear I’m going to head right toward. When a door opens, I’m going to take it.

Pretty Awesome

Okay, this entire post is gonna be a disclaimer. The ENTIRE THING. I have never had anyone pay me for anything I posted. If I've ever gotten anything free, I've let you know. I'm not typically an endorser (although if I like something, I'll let you know). I don't blog to get free stuff. I don't blog to get paid (although sometimes I feel like I blog so much I should get paid).
Because I don't typically get stuff sent my way, I feel like I should let you guys know if I am writing about something that's been sent to me.

About a week or so ago I received an e-mail from a lady named Allison who works at a GAP in Cool Springs (which is in Tennessee, if you aren't familiar with the area). She is a leader (I'm pretty sure that's what they call their managers). She sent me a link to a coupon that can be used at GAP, Old Navy, or Banana Republic. It is for 30% off March 17 (that's today!) thru March 20th. But that's not the best part of it. The best part is that 5% of the money spent is going to be donated to JDRF!

It's the time of year when you should be buying clothes for summer anyway, so get out this weekend and take the coupon. You'll be getting an awesome discount, some cool clothes AND benefiting JDRF while you do it.

HERE is the link.

And let it be known, other than the coupon, I didn't get any kind of compensation for this blog post.

Being Sick Sucks

Being sick sucks. Bottom line. If you get sick as a “normal” person it sucks, I’m sure. If you get sick with diabetes, it really sucks. I’m typically a fairly healthy person (diabetes aside). I usually don’t get more than a cold a few times per year. In fact, until this winter, I hadn’t been to the doctor for actual sickness since 2007. Yup. You read that year correctly.

But this winter has destroyed that lovely record. Since December, I’ve missed a total of 6 days of work for sickness. I’ve been to the doctor twice. Including this past weekend. Thursday morning I was feeling a little crudy. I thought it was allergies, so I started with the over the counter allergy meds. Friday morning I couldn’t talk. I had coughed so much (and gotten so little sleep) that I already knew that I wasn’t going to be able to work.

I went in for long enough to let my boss know that I couldn’t talk and to be sure to get all my appointments rescheduled, but I left there after half and hour and took off for the doctor’s office. They didn’t do a strep test, but I got antibiotics and cough syrup and headed home to rest.

By Saturday morning, I was pretty darn sure (strep test, or no strep test) that I had strep throat for the first time since I was in high school. Probably about 15 years ago, to be honest. My throat was killing me. I couldn’t talk above a whisper (actually, its Monday afternoon as I’m writing this, and I still can’t talk).

And then the blood sugars. Oh the blood sugars. Saturday about noon I pulled up my pump graph for the past 24 hrs. There wasn’t a single reading below my high marker on my cgms (my high marker is set at 170). Not a single one. I was even running on a temp basal. And it still wasn’t doing any good.

My mom was a saint. I asked her to pick up a couple of things for me at the store and she went above and beyond. I have enough sugar free jello & popsicles to last me for a while. She also kept checking up on me. I know she was worried since I’m living alone again.

Sunday night I thought I might be able to go to work. I couldn’t talk, but I thought I could work on paperwork. But Sunday night was a cough fest again and I got almost no sleep. So Monday was another sick day again. I’ve basically not been out of pajama’s for four days. I’m praying and hoping that Tuesday (the day I have this post planned to go up) is a better day. I really, really, REALLY need to get back to work. It’s hard for me to get caught back up when I miss so much time at work.

It’s times like now that I truly hate having diabetes. I fully believe that if I had a functioning pancreas that I would already be on the mend. But I can’t. Being sick means taking longer to get better. And it sucks. Perhaps I’m having a little pity party for myself because I’m never sick.

Perhaps I just feel crappy and I want to complain a little. But right now, diabetes sucks. And as we like to say on Twitter #duckfiabetes

#JDRFGovDay

Over the weekend a small group of D-bloggers was invited to go to the Nation’s capitol to speak on behalf of our entire community. While I would have LOVED to have been invited, I was very happy with the bloggers that were picked. They are a great representation of our community and I feel proud to say that I can count them among my friends (both those I’ve met and those I haven’t). Also, it would have been bad as I’ve been at home recovering from strep throat since Friday morning ;) (more on that in another post).
One of the great things about the event was that all of the bloggers were tweeting while they were there, so those of us who weren’t there could still ask questions and have a front row seat to what was going on. I followed #jdrfgovday faithfully all day Saturday and Sunday.
There were some amazing topics discussed and some were topics that really needed to be brought to life. But that’s not what this post is about. It’s actually about a tweet that Kerri (@sixuntilme) posted. I believe she was quoting someone who was there. But what that tweet said really had my mind turning. It said “People just don’t understand the dangers and the difficulties of type 1 diabetes.”
Wow. I’ve talked about how it can be hard to explain living with disease to people. But as I was thinking about it today, I kind of looked at it a little bit different. Diabetes has such a bad connotation in every day life. As an adult with T1, people automatically assume you’re a T2. And that diabetes is “your own fault” (which I DON’T believe for either type). I never hesitate to correct people on what type of diabetes I have. But I also make it a point to not complain.
I don’t want people to take pity on me. I don’t want them to think “poor girl” or “how sad” when it comes to me. I like to think of myself as a fairly independent person. I hate asking for help in any area of my life. I don’t want to appear “needy.”
Because of this, I typically play down my life with diabetes. I tend to play it down in my own mind as well. It’s just part of life. I do it. Every day I’m my body’s pancreas. I count carbs, test, bolus, do site changes, make corrections. Its route at this point (after 25 years, it should be!).
I can be low or high. And while I may mention it in passing to someone, I don’t often let them know how badly I feel. Or how frustrated I am. Or how scared I am. Most of the time I don’t even let the online community know these things, although it is easier with you all than it is with anyone else.
Unless you live this life, you can’t really know. I’m so thankful for my friends and family, who understand better than anyone in my “real life.” They are the ones who see me in my weak times. But even with them, I like to protect them. I don’t always let them know. Because why would I want to worry the people I love anymore than I know they already worry about me (I believe the correct term for this is diabetes guilt)?
The truth of the matter is that living with diabetes is HARD. Sure, it’s part of everyday life. But it isn’t easy. It never leaves. It never takes a break. On vacations, diabetes is there, often times screwing it up. Diabetes makes taking a trip to the mall harder. It makes being sick harder. It makes preparing for a wedding harder. It makes planning a family harder. It makes driving for long distances harder. Diabetes means extra steps, and thinking ahead, and over packing, and preparing for every possible circumstance.
Diabetes affects every single aspect of my life. I don’t make it a secret that I stay at my job for the insurance. The things I would love to do are not an option at this point in my life simply because I have to think about diabetes. If I were anyone else (with a functioning pancreas) I would have probably sought a different path a few years ago. But everything that I want to do requires me to either return to school or to risk a job that would have no health insurance. Which, as we all know, can be detrimental to our diabetes health.
Most days diabetes doesn’t rule my life. Most days I integrate it into my life. But on the days it does rule my life (rollercoasters anybody?), I do my best to keep it to myself. But I’m thankful. I’m thankful for my health, I’m thankful for the D-OC, where I know I can always go for support. I’m thankful for my friends and family that support me. I’m thankful for my job that has terrific health insurance.
But the real question is, do I share more with people who are in my life every day? Would sharing my fears and my frustrations do more good? Would it help advocate for diabetes? Should I be sharing more? Educating more? Would it help bring more light to this disease? I think I walk a fine line between wanting people to realize that treating this disease is HARD WORK and wanting them to realize that I don’t need pity, only support.
Perhaps I’m too weak to handle that. I’m not sure. How does an independent person share a part of their life with others that is going to make those people worry about them? I don’t take compliments well. And I don’t take others’ worry well either. Do you share your ups and downs and frustrations with your “real life” friends and family? Do you get pity? How do you deal with it?

Diabetes GPS

I am not very OCD about many things, but one of the things that annoys me is if my infusion site for my insulin pump is on a different side of my body than my CGMS sensor site. That’s usually not such a big deal, except when I go out of town for a weekend knowing I’ll need to do a sensor change…and take everything to do the change, except a new sensor.

Because of that and because I had been waiting to hear if my new insurance policy will cover my sensors (it’s the same company, but a different policy, so some things might not be covered), I decided to take a week off from having my CGMS sensor in week before last.

By the end of day 2, I knew I was going to hate every second of it. Because I’m so used to having the sensor, I have gotten out of the habit of testing as regularly. I still check around 6-8 times a day, but not as often as I should (especially when I’m at work and I tend to get busy and forget to test).

When I don’t test regularly, I basically don’t have a clue what’s going on with my blood sugars. And because I was not testing as regularly, AND I didn’t have a sensor in, I have dealt with some crazy highs and lows in the past week. I had several lows, but managed to catch most of them before they go too terribly bad. I also had more highs than I’d like to admit. One day I nearly hit 400. And as we all know, that left me feeling horribly ill and tired.

Having CGMS is like having a map of your blood sugars. Or even better, having GPS navigation. It tells you where you are going (maybe not how to get there…but still, it’s better than nothing) so you know what to expect. When you have CGMS, going without it is like taking off on a cross country trip. With no map AND no sense of direction. You might think you’re headed for California and end up in Wisconsin.

Sure, sometimes you can feel your highs and lows, but if you have been a diabetic for a long time like I have, often the ability of sense your highs and lows is dampened. Basically, your body gets so used to the highs and lows that it stops giving you the signs. If I’m lucky, I can still catch my highs and lows before they get too extreme, but sometimes I’ll be 52 and not even feel it. Once, I was 38 and still functioning normally. Other times a 69 will hit me so hard I’m left reeling.

That’s why I need my road map/GPS. I need my CGMS to keep me where I need to be. After 25 years of living with diabetes, my body has already suffered years of irreparable damage. And by keeping my blood sugars in range to the best of my ability, my body suffers less. This means fewer complications. Which means a longer, healthier life (are you listening insurance companies?? You should be).

By early last week, I put a new sensor in (leaving me 1 left). I needed to get my map back. I needed my control back. Mid-week a dear friend of mine in Nashville sent me a few extra sensors to tide me over until I heard something from my insurance company. Ironically, the next day I got my shipping confirmation from MiniMed that they were sending a new box of sensors (which means my insurance company said “okay”).

I got my ability to care for myself back. But how many people get turned down for CGMS, or have to fight it every step of the way? This post didn’t start out to be one talking about insurance. But it turned out that way. Sometimes I think my posts turn into something totally different for a reason. Maybe someone, somewhere will read this and realize how important it is to have good technology AND for people to have reasonable access to said technology.

There was life before CGMS. Just like there was life before the Internet. And cell phones. And cable TV. But I’d be willing to bet that people wouldn’t want to go back to a life without those technologies. I just hope and pray I never have to go back to life pre-CGMS and pre-pump.

Out Dated Test Strips

A couple of weeks ago, one of my T2 friends brought me several boxes of test strips that were about to go out of date. She doesn't test as often as her script is for, so sometimes her strips go bad before she can use them. If she catches them before they are outdated, she brings them to me, since I use them much quicker.


The date on these boxes was 02-2011. It's officially March now. Technically they are outdated and I still have a full box and a half of a box left to go. That's 150 strips that I really hate to throw out. Does anyone know any stats on accuracy beyond the expiration date? Are they still safe to use? Are they still accurate (or as accurate as any strip gets, since we all know accuracy in test strips leaves much to be desired)?

I have been using them for this week. My blood sugars seem to be accurate. I haven't had any that have made me question the results. But how long can I keep this up? Should I still keep this up?

Have you ever used expired strips? Have you ever had a bad experience using expired strips? Give me your opinion, D-OC. What do I do? Toss them (or send them to Lee Ann for art!)? Or keep using them? If you think I should keep using them, how long should I keep it up?

Meeting Crystal

About two weeks ago, Crystal Bowersox (last season’s runner up on American Idol, and fellow T1 diabetic) tweeted that she would be performing at the Bluebird Café in Nashville on February 26th. Knowing that the Bluebird is a very small venue, I immediately went to their website and saw that tickets were only $10 (plus a food/drink minimum). With that price & that size of venue, I knew I’d do whatever I could to be there.

The reservations became available last Monday and I stalked the internet site (continually clicking refresh) until I could reserve a table for two. I wasn’t sure who would be going with me, but I wasn’t going to go alone, and I was sure I’d find someone to go with me. Strangely enough, I only had 1 person (locally) respond to my request for someone to attend with me. Everyone seemed to be busy or too far away.

I’d never been to the Bluebird Café before last Saturday night. For those of you who aren’t familiar with the Bluebird, it is basically a singer/songwriter showcase. It’s very small and has a “listening room” type policy. Basically, it’s the person, and their guitar (or other instrument of choice) performing their music. It’s very well known in the music industry. It has a ton of history and some amazing performances have happened there.

From the first time I heard Crystal perform on American Idol, I loved her voice. Finding out that she was a Type 1 diabetic made me love her even more. There’s just something about the d-connection that makes you root for a person. During her Idol run, I posted two open letters to her. I’m sure she never read them, but it was a way to get my thoughts out.

Amy T from Diabetes Mine ended up getting an incredible interview with her. Even then, I knew I’d love to meet Crystal. If for nothing more than to tell her that I think she’s amazing. And Saturday night I ended up standing in the same room, less than 6 feet from her.

First off, diabetes aside, Crystal (and her husband, Brian Walker, who also performed) is amazingly talented. She’s also amazingly funny and good natured. She came right out and said she didn’t have a set list, so part way through the performance, she basically started taking suggestions from the audience. She did a great mix of songs from her album (which you should GO BUY!), songs that are her’s but weren’t on the album, and covers of songs (some of which she performed on American Idol).

She talked about her first time performing at the Grand Ole Opry, which was totally impromptu the night before. She talked about being star struck by Vince Gill. It was kind of like listening to one of your friends telling you a cool story about something that happened to them. Crystal Bowersox gives down-to-earth a whole new meaning.



But, the diabetes was there too. I could see her diabetes tattoo on her wrist while she played her guitar. And before she came up on stage, she and her husband were sitting in the corner, not far from me. I couldn’t see them because of the way the wall was, but I heard the familiar “shunk” of a lancet device. I wasn’t listening for it. But I heard it. It’s a sound you can’t mistake when you’ve been hearing that sound for so many years.

Afterwards, Crystal stayed to sign autographs and take pictures. I tried not to go completely “12 year old stalker” on her. I tried to be normal. But I did tell her that the D-OC loves her. And I asked to see her tattoo (it’s beautiful by the way). I just wish I’d had enough sense about me to ask to get a picture of it.

I also managed to get her into trouble with her husband. :) I asked if she had a CGM. She told me she did, but didn't have on a sensor at the moment. I told her I didn't either (apparently we were both taking a break). But Brian was standing behind her and heard her say that and he said, "You don't have a sensor in? Why not?" :) She did ask me if I liked mine. I told her I loved it and told her about putting them on my thighs instead of my stomach (less brusing for me). Maybe I actually shared something with her that could help? That would be pretty awesome.

Meeting Crystal was pretty amazing. She’s an extremely talented songwriter, an amazing muscian and singer, and a very strong woman living with diabetes. I’m glad to say that I was able to meet her. Thanks, Crystal, for being so kind to all of your fans. I know it meant a lot to me, as I’m sure it did the others who were there.

Diabetes in Strange Places

Me and my theatre craziness. You’d think with a blog dedicated to theatre, I’d STOP writing about theatre related stuff here. Really, I don’t mean to. But in the past month or so diabetes and theatre have been intersecting in my life like crazy.

On Friday night I went to a production of Camp Rock: The Musical at Cumberland County Playhouse (if you’re interested in my review click here). I took my sister and her boyfriend, mostly cause I didn’t want to go alone and I thought that my sister would enjoy the show (turns out both of them did).

We sat third row, center, so our seats were very close to the stage and very well placed. When I’m watching shows I have a tendency to pick out ensemble members and watch them. They aren’t always a huge part of the show, but seeing their actions and facial expressions can be so fun and give you a slight bit of insight into a character that often has no name or story.

During this particular production I was watching a couple of the kids. And then I saw it. Right before the intermission, I saw the clear tubing at her waist. And in my head I know that a sound pack doesn’t have clear wiring. I followed that clear tubing with my eyes, right to the pink MiniMed insulin pump hanging from her waist.

Being a totally cool person with diabetes, I freaked out! Oh my! I couldn’t believe it (not like I don’t meet diabetics on a fairly regular basis or anything… LOL). After that I couldn’t help but watch that little girl. I also knew I was going to have to introduce myself after the show.

I found Lindsey and her dad standing out in the lobby of the Playhouse. All I did was take my pump out of my pocket and show it to her. Insta-connection, right D-OC? :) I introduced myself to her dad and found out her brother was also in the show (and I’d seen him in other productions at the Playhouse).

We talked diabetes for a few minutes and I got a totally cool D-pictures of us with our pumps. And I made some theater/diabetes friends. It’s fun to know that we can have an instant connection with another person, just by sharing the common bond of diabetes.

Diabetes: The Musical?

Those who know me, know my obsession with all things theater. In fact, I felt so bad about my theater posts on my diabetes blogs, I broke down and started a blog that is solely dedicated to theater. When I started that blog, I kind of promised myself that I wouldn’t “bore” my diabetes readers with my theater posts on this blog.

And here I am, just a few months later, breaking that promise already. But since this theater post involves diabetes all the way, I figured my readers would forgive me. About two weeks ago I saw a Twitter post that came from TuDiabetes. In that post there was a link to an article that totally blew my mind. Someone had written a musical about Type 1 diabetes. A musical called Andy & the Beats. Wow. Not only had it been written, they were putting on a production. And the most amazing part? It was in Knoxville, Tennessee.

As with any diabetic, my first, knee-jerk, reaction was to be wary of a musical written about diabetes. How “wrong” would it be? Was it a joke? A comedy of errors? A random person’s attempt at making a joke of this disease we live with every day? I think most of us can understand a reaction like that. We deal with media misconceptions on a daily basis. Those of us in the diabetes online community spend out time trying to education and inform, often running into brick walls of ignorance over and over again.

The initial article put me completely at ease because the writer of this musical, Andy Rogers, is living with Type 1 diabetes. So is his sister. Knowing that, my excitement took over and I started researching when and where this musical was going to be performed, and how I was going to make the time to be there.

There were only four performance times, admission was free with all donations going to benefit JDRF. While I was researching this show, I found Andy’s research paper online. Those of you who have ever written a research paper, or read one, know how boring they can be. This one was not. I read all 52 pages. And I cried. This was a story. It was the story of Andy and his sister. It was the story of their family and diabetes. Sure, there were the scientific parts, and the “technical” parts. But this research paper was a story that made me even more sure that Andy Rogers had written a special show that would education, inform, and entertain.

Sunday evening I arrived over an hour early. I’m not terribly familiar with the Knoxville area, and even less familiar with the University of Tennessee campus, so I wanted to be sure I got there in plenty of time. From posts on the Andy & the Beats facebook page, I knew that they had to turn away people from one of the performances, and that they had had a full house at the others. I was going to have a seat. And hour early was a good bet. I was the first person in line.

Being the first in line didn’t last long. Within 20 minutes there was a line all the way down the sidewalk. When they opened the house, Andy was at the door and you could see the amazement all over his face. Even though (from what I understood) they’d had full crowds every time. I knew with that kind of reaction from him, and the crowd size, that this show was going to be great.

And great it was. Andy Rogers played a 12 year old Andy who developed Type 1 diabetes after a virus attacked him. The Beats were 3 singing, dancing… well, I’m not exactly sure what they were other than maybe Andy’s guides to having diabetes. Regardless, they were fantastic. Played by Lauren Fitzgerald, Brooks Morelock, and Jessica Hunter, they made Andy’s transition into diabetes… well, kind of entertaining.

Andy was a healthy, happy 12 year old boy and then is attacked by Virus, played by James McGuire. The Beats show up to help Andy by explaining Type 1 diabetes and its symtoms to him and the audience in “The Symptoms Song.”

Andy’s mother takes him to a Dr. Arfaee, played with great comedy by Tina Arfaee. At one point she stabs an orange in Andy’s hand with a syringe. And when I say stabs, I mean STABS. :) How many of us remember learning to give a shot on an orange? *silently raises hand* The title of the song she sings while she stabs that orange: “Your New Friend, Insulin.” I laughed my head off during the entire song.

Andy’s mother, played by Martha Reddick, is very disturbed by the fact that her son can’t be “fixed” by a pill or a shot. Andy ends up in a conversation with his Pancreas, also played by James McGuire. Andy’s Pancreas is angry. So is Andy. They both want to know why this happened to them (sound familiar anyone?).

When they can’t figure out why, Andy starts searching for a cure. Stem-cell transplants, pancreas transplants, etc. It touches on all the reasons why they are still in research stages, or not good for a “healthy” person with diabetes. Andy then searches to make his own cure. After all, he’s a smart boy. When his “cure” fails, he becomes frustrated and sad.

In comes Campbell, another young person living with diabetes. Campbell is played by Campbell Garver, a child actually living with diabetes. Campbell lets Andy know he’s not alone and introduces him to other children with diabetes. Andy Rogers wisely, and beautifully used all children living with diabetes (a full list of names will be listed below).

The final song “Walk for the Cure” left me in tears. Obviously written for the JDRF Walk(s) to Cure Diabetes, the beauty wasn’t in the words (though they were beautiful in their own right), it was in the children singing those words. All I could think as I sat there was that I have just celebrated 25 years living with diabetes. And all I could do is cry and pray that these children don’t have to live for 25 years with diabetes. That there will be a cure before they reach that “milestone”.
Andy Rogers did a wonderful job writing this musical. It’s informative, funny, a little snarky at times, touching, and it pulls at your heart strings. Even though the show has closed, I can’t help but hope that Andy has a way of keeping this show alive. Maybe local communities could do their own productions of the show? I believe that it should be done at Children’s Congress as well. Families affected by diabetes would LOVE this show.

Type 1 Diabetic Children:

-Campbell Garver

-Amanda Minutolo

-Autumn Barnett

-Natalie Olson

-Gwendolyn Dolenee

-Gavin Bentley

-Rachel Bentley

-Quinntin Bentley

-Catrina Estes

-Russell England

-Addysun Seaton-Camfield

-Dylan Green

-Riley Shover

-Ryan Hopkins

-Kelli Rogers

Backseat

Hey all you folks in D-OC land. :) How's it goin'? I feel like I'm missing out on the D-OC and it's going on's. (Yes, I just totally went "southern" on all of you. Sorry, I'll rejoin the English speaking race now... )

I've been so busy lately. I've been trying desperately to get my life back in order now that my roommate has moved out (VERY sad :( about this!!!). I've been trying to get caught back up at work (we've been very busy). I've been thinking about buying a house (Ekk!!!). I've been putting up with the ten million snow storms that keep hitting here. Overall it's been kind of crazy.

In all of this, I've noticed something. While I miss the D-OC so much it's crazy, diabetes itself has taken somewhat of a backseat in my mind. Not my actual care, of course. That's been pretty decent. But the thinking about it, blogging about it, worrying about it has been less.

In fact, outside of my mini-celebration to celebrate my 25th diaversary, diabetes has pretty much been hanging out in the backseat of my life.

I'm not sure yet if that is a good thing or a bad thing. Diabetes is with me 24/7. As we all know, there are no breaks or vacations from this disease. So is stepping back from the D-OC and having diabetes advocacy and topics take a break from being in the forefront of my mind a bad thing?

I guess there's no "right" answer for that. I continue to blog when I get inspiration. I'll continue to be a part of the D-OC because you guys are part of my family. Heck, for all I know, my inspiration could hit tomorrow and I could be right back to posting three times a week. But for now, I'm okay with once a week and letting my mind have a semi-break from diabetes.

On that note, here's a picture of what I had to celebrate my diaversary:

And here is a totally awesom button that my friend made me to connect to my other blog. :)

I hope you all have a wonderful weekend!

Spare Change

If you're like me, you don't carry a whole lot of cash on your person. But I'd almost bet that most of us could find a quarter rolling around in the bottom of our purses, or in an old coat pocket. A quarter. Twenty-five cents. When we're talking about change, that's not a lot.

But when we're talking about diabetes, twenty-five is a huge number. Twenty-five years ago today, a little 4 year old girl ended up in the hospital. Twenty-five years ago her life, and the lives of all those who loved, and would love her changed forever.

That little girl grew up. I'm almost 30 now. And diabetes is still around. As I'm writing this post my emotions are all over the place. Part of me celebrates. I celebrate LIVING with diabetes. I celebrate friends, and family, and the online community. I celebrate decent health. I celebrate the fact that parts of my life are so much better as a result of things surrounding diabetes.

But I'm also sad. I mourn. I mourn for innocence lost. I mourn for good health that I've never known. I mourn that people are still dying from this disease.

I'm angry because the doctors said "ten years" in 1986. I feel guilty because my health is better than some of my peers (Why did I get the good genes??).

Diabetes is an emotional disease. I am glad that some good emotions are coming out today. I'm going to Knoxville to celebrate a friend's birthday. But I'll also be celebrating 25 years. A quarter of a century of living with diabetes.

And just so you know... I'll probably have ice cream. :)

Maybe...

Maybe it's the cold winter weather and all the snow and rain. Maybe not. But my diet has gone to crap in the past several months. I used to be so good about limiting my fast food, and not eating pizza, and too much pasta or a lot of sugary foods. I did my best to eat fresh fruit and at least some veggies. But lately, all I've wanted is junk food.

Sweets, pizza, greasy foods. It's not that I haven't always loved them, I've just been better about controlling my urge to actually consume them all the freaking time! Not lately though. And my waistline feels it. I've gained weight. My insulin intake is up (partially from consuming more carbs, and partially from the crazy blood sugars that often go hand in hand with unhealthy foods). And I don't really feel good about myself right now.

I refuse to make my diet, exercise, or weight an New Year's resolution. I never keep those things anyway. :) But I do acknowledge my need to get back on track when it comes to my eating habits. And I'm going to start.

By no means will I give up all my junk food (I never do), but I am going to start making myself remember that I need to eat in moderation. Maybe then I can shed some of this weight, and eventually work my way back up to exercising again. We'll see...

The Land of the Living

I think I might be joining it again. Really, after going on vacation to NYC, coming home and getting sick, my roommate buying a house and moving out, and my inability to get on the internet at work, I've basically been MIA.
And it SUCKS!!
But, things are starting to slow down again. And I did what I thought I wouldn't do for a long, long time... I got a smart phone. Yup. Although I won't use it all the time, I can at least check in on twitter a couple of times a day to see what's up in the world. :)
That makes me happy because I've missed you guys. I hate not knowing about what's going on in our community. It makes me feel out of touch and a little crazy.
As for diabetes blogging, right now I'm not sure what to blog about, so tonight, I'll just say "hi!" and let you all know I'm still breathing. And let you know I'll be back on the blogging bandwagon in no time.

Fun Trips & Great Friends

This past weekend I had the pleasure of making yet another trip to the city that never sleeps. Those of you that know me at all know of my obsession with Broadway, theatre and the city that hosts such great dramatic arts (and as Allison like to remind me, they host so, so much more than just theatre).

But the other thing that New York City offers me is a sort of central meeting spot for many of my D-OC friends. That makes my trips extra special. This trip I knew would be hard for people to meet with me since my only free time was Monday morning. But, I took a chance and issued an invite to everyone I could remember that might possibly be able to get into the city.

In keeping with tradition, Allison and I saw a show on Saturday night, after she took me to dinner at quite possibly the only place in NYC that plays country music! :P Allison, my roommate Amanda, and I saw La Cage Aux Folles. Kelsey Grammer and Douglas Hodge were the leads in the show and it was quite hilarious. Douglas Hodge certainly deserved the Tony award he received for the role. His ability to project his expressions all the way to the back of the theatre.... wow. Kelsey Grammer was hilarious as well. I plan on posting my review on my other blog in a day or two.

Monday morning I decided to have my little D get-together at Dylan's Candy Bar. :) How ironic, right? But there's nothing like ice cream and cupcakes for brunch. I don't care how much you want to pretend you don't like the idea. Allison, Karen, and Caroline (also known as carobanano) came to hang out with me. I'd met Allison and Karen before, but only knew Caroline from Twitter. I LOVED getting to meet her. She is super sweet (no pun intended... or maybe there is!).

As we were leaving Dylan's Candy Bar, my lovely roommate took some fantastic pictures of us looking like an awesome girl band! :)

I just realized how short I am.... :)

Diabetes Sisters Conference

Just a few days ago I got a friend request on facebook from a lady I had the pleasure of meeting an Insulin Addicts Anonymous meeting (yes, this is the name of Nashville's Adult T1 support group!). I don't get to make it to very many IAA meetings because Nashville is quite a drive for me, but when I get to go, I love spending time with other T1s. Jackie and I only met once at the last meeting I was at (back in the summer). At the time I don't believe she had a facebook page. When she friended me the other day she asked if I had heard about the Diabetes Sisters Conference in Raleigh, North Carolina. I hadn't heard about it, but I asked her for a link to the information anyway.

Turns out it is going to be the weekend of April 29-May 1, which is not a good weekend for me. But after exploring the information, I thought I might forward the information onto you all in case you were interested. It sounds kind of like grown-up diabetes camp for girls! :) Yay!

The agenda can be found HERE and seems to have some very interesting break-out sessions. There is one about pregnancy, and several about exercising (including maintaining blood sugar levels during) that sounded interesting to me.

Riva Greenberg is also going to be a keynote speaker on Saturday.

I hope that some of you can go and let me know how it is. If you go, let me know what you think!