Blind Sided by Love

I’m falling in love. I’ve never really been in love before. At least not like this. I’m finding myself smiling at the strangest times of day and giggling over the craziest things. The strangest thing about the whole deal is that I feel like I’ve been blind-sided by the whole experience. They say that it usually happens that way. You like someone well enough and end up going out on a date. It’s not a terrible date, so you

go out on another. The next thing you know you’re in major crush territory.

Don’t panic. There is no knew significant other in my life… at least not in the traditional sense. I feel like I’m falling in love with my new town. I’ve always liked Nashville well enough. I knew that I wanted to be in a city larger than where I grew up. I also knew that I didn’t want to move terribly far away from my family and my hometown. So I agreed to go out on a date with Nashville.

When I moved here 7 months ago, I knew that I would enjoy it. I wasn’t sure how long it would last or where it would lead me, and in many ways I’m still unsure. But the more I’m here and the more I find out about my new home, the more I love it. I find myself smiling at the Nashville skyline every single day on my commute to work. I find myself being a tourist and heading to places I’ve never been before, in spite of growing up less than three hours away from here. I find myself looking for new places to eat and new places to find theatre and music.

I’m slowly finding friends, some I’ve known online, others I work with, and some I’ve met since I moved here. I’m learning my way around town and I now can say I successfully travel without my GPS more often than with it. I am learning the little things about this place. The public transit is lacking (hey, Nashville, let’s work on this, k?), traffic during rush hour is ridiculous, but you always know you can find some good music almost anywhere you go and that people are generally kind-hearted and courteous. I’m learning the best (and cheapest) places to park downtown and how when the best times are to eat at certain restaurants. I’m finding the places that the tourists aren’t (thanks in part to many of my new friends), and enjoying every second of it.

Over the holiday weekend Nashville had a Fourth of July fireworks show (appropriately titled “Let Freedom Sing”) at Riverfront Park downtown. I decide to brave the crowds (estimated afterwards to be around 215,000) and headed with a friend to see what was named by the American Pyrotechnics Association at #2 in the nation. I’m so glad I went. It was a spectacular show, but it was also when I realized that I was falling in love with Nashville and WHY.

Despite the fact that there were over 200,000 people descending on a very small area of Nashville this may have been the most laid back and calm I’ve ever seen at a large event like this. I’ve been to a lot of things like this in several different cities. There were police everywhere on the Fourth, but no one seemed stressed. No one was in a hurry. No one was pushing or being rude or inconsiderate. Even compared to CMA Music Fest, this was a whole different creature. I chalked that up to the fact that CMA Music Fest was mostly tourists, while the Fourth of July celebration was mostly locals.

Even more shocking was how easy and calm it was to get out of downtown after the event. Again, there was no rushing, shoving, pushing, or stress. Obviously it did take a little while, with so much traffic, but it still wasn’t stressful. All in all, the experience was what sums up Nashville: laid back with plenty of the courtesy that Southerners are known for.

I can’t tell you if my major crush on Nashville will develop into full-fledged love (though I’m inclined to think that it’s already there). I don’t know if it will be a long term love, or if it may fizzle out over time. I don’t know what the future holds for me and my new beau. But I can say that I am enjoying every second of this new relationship and all the joy it is giving me along the way.

Author’s note: I apologize that I haven’t been blogging more often, but the last year has been a year of changes and crazy for me. Perhaps I’ll be able to get back into it slowly. I can promise I’ll never abandon it completely, but I can’t promise how active I’ll be in my blogging. Either way, I’m always around. You can email me or find me on facebook or twitter. 

Pockets

Wearing an insulin pump certainly comes with its fair share of issues. They aren’t enough to make me think of every NOT wearing one, but there are issues. Something that you nearly always hear from women insulin pumpers is how annoying it is to wear a dress AND an insulin pump. In fact, I can’t even count the number of times this has come up in conversations that I’ve had with other women with diabetes.

There have been so many blog post written about it. More than I could even tag here. Where to wear your insulin pump when you’re in a dress…. Oh my. I’ve shared with so many women and had them share their stories and tips with me and I LOVE it. Almost as much as I love dresses. But in truth, I’m the world’s WORST for buying dresses and not wearing them.

I love dresses. I love pretty things. I love to wear them. But I hate to wear them at the same time. Because in wearing a dress, my insulin pump (and in turn, my cgms) become inaccessible. Or at least way more difficult to be accessible. So, I don’t wear dresses that often. I buy them. And don’t wear them.

But I recently discovered something. Target has dresses with pockets. Really! Pockets! Pockets in a dress make an insulin pump the easiest thing EVER. Just a seam ripper to take a couple of stitches out, and I can thread my pump tubing through the pocket. And I have easy access to my pump AND I can wear a dress.

So far, I’ve purchased 3 dresses with pockets. And in the past two weeks, I’ve worn more dresses on more days than I’ve probably worn in 6 months. I love it. I want more of them. In fact, I want them ALL. Dresses with pockets make me more fashion happy than I’ve been in a long time. I know that with some minor alterations, any dress could have pockets added. But I’m too lazy to make the alterations myself and too cheap to pay someone to make the alterations.

Really, I can’t be the only woman who likes a dress with pockets. For any reason, not just insulin pumps. Pockets in general are just nice. Why don’t more dresses have them? What about you other ladies out there? Have you found dresses with pockets? Where???? I need a few (dozen) more.

D-Sick Day

I’ve written about the fine line between making people understand how complex and difficult living with diabetes is, while not letting them pity me or feel sorry for me. It is a never ending tightrope. I want to believe that I can do anything, in spite of diabetes. I DO believe that 99.999% of the time. Sure, there are pesky little things like being a pilot or being in the military, but I’ve done so many things in my life when diabetes wasn’t a huge in the “can I or can’t I,” just in the planning of the “I can.”

I’ve had diabetes for 28 years. Many years of living with a disease that factors into every part of my life. But I rarely let it get me down. In fact, I HATE when diabetes slows me down. And it does sometimes. As much as I don’t want to admit it. I will work through d relate sickness, and headaches, and low blood sugars and high blood sugars. I never bat an eye. Or if I do, the normal observer would never notice it as such.

The last time I had a time when I had to stop doing something (form more than a slight pause) or call in sick to work was almost ten years ago…until last week. In the past 5 months, my life has been turned on end. Instead of downloading blood sugars and adjusting basal rates for all the MAJOR changes in my life, I’ve been chasing problems. Fixing lows and highs as they come. Not the smartest thing to do, but for a while it was…. Working? Okay, not really working, but I was going okay.

Last week I was fighting yet ANOTHER low blood sugar. I had a friend over for dinner. I ate, and went low AGAIN. So, instead of testing and treating and testing again, I just ate. And drank. And ate some more. Needless to say, by the time bedtime rolled around, I was in the high 200s. I bloused, plus a little to treat said high. Less than two hours later, I was up again and I was in the high 300s. I bloused again. By 1:00 in the morning, I was nearly 500. I pulled by infusion site and started over. I tested for ketones (there were none, thank GOODNESS!). I was up again at 3:30 and had a “rant” on face book as I was still in the high 400s. I bloused again and went BACK to sleep.

I woke up the next morning sick. I still had no ketones. But my blood sugar was in the mid-200s. I had the pounding headache and I felt like someone had taken sandpaper to the back of my throat. And then I did something I haven’t done in nearly a decade. I called in sick to work. I was already scheduled to take half a day off as I had an early afternoon appointment with my endo (ironic, huh??), but the fact that I had to call in sick to work for something related to diabetes made me angry.

By that afternoon, I was nearly totally recovered. I was blessed to have an appointment that afternoon. After months of craziness, I talked with my nurse practitioner (who I see when I don’t see my endo) about all the changes in my life and about my blood sugars and about the adjustments that I needed to make to (hopefully) get me back on the right road. We talked about my lower a1C and about how I hated how I got there (roller-coaster blood sugars).

I walked out of the office feeling better physically and mentally. But I was still so angry. And hurt. And upset. And disappointed. Because I felt (feel?) that calling in sick because of diabetes meant (means?) that diabetes won. Somewhere in my conscious mind, I know better. But I can’t help the way I feel. I feel like I let diabetes won. Maybe just for that morning. But it won. And I hate that more than I hate anything. I hate it more than the shots, and infusion sites, and finger pricks, and the lows and the highs. I hate it more than I hate feeling bad because of diabetes. I hate that diabetes stopped me, even for a little while.

(Totally related note: Anyone who says diabetes affects only your blood sugar, hasn’t dealt with the mental effects of living with a chronic illness.) 

Help Out One of My Most Awesome Readers

A few years ago I was seeing a play at a theatre near my home. It was full of kids, their annual "young person's" production. While I was watching (and enjoying) the show, I spotted something sticking out from under the shirt of one of the kids. I looked a little closer and spotted an INSULIN PUMP! 

After the show, I sought out the girl, and thus started a friendship with her and her family. I adore them, and Lindsey is a fantastic person to chat about diabetes with. 

A few weeks ago she contacted me to see if I could help her out on a school project. While I'm unable to help her out (you'll see why below), I knew I had some readers who may be able to pitch in. 

I've posted her pitch below. If you are interested in helping her out, please email me or shoot me a message on twitter or facebook and I'll get you her phone number.

Perception Deception

My name is Lindsey Lively, and I am a sophomore in high school, as well as a type-1 diabetic. For my honors biology I project, I am testing the affects of hypoglycemia on type-1 diabetics’ perception of sweetness. For my experiment, type-1 diabetic participants will sample different juices, varying in sugar content, and will rate the sweetness of the juice on a scale of one to ten. They will perform this task when their glucose levels are normal, and then again when their levels are low. A family member must administer the samples, so the participant will not know what type of juice he or she receives.  The same subjects will repeat the test several times.

If you are interested in participating in this experiment, or would like more information regarding this study, please contact me.

No More Shame

Miss Manners,

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

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

GASP!

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

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

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

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

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

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

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

Sincerely,

Cara (T1 diabetic for 28 years)

Moving Mountains: Medtronic Diabetes Advocates Forum

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Advocates & Dr. Kaufman

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

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

Upside Down

Happy New Year!!!! 2014 is upon us with so many new things coming up. In the past three months my life has been turned upside down on it's head. I've had so many things happening in my life and so many major life changes that I haven't had time to breath, let alone keep up with my blogs and social media.

I wanted to check in with you (my few and faithful readers) to let you know that I haven't abandoned my blog. I haven't forgotten about you. I haven't stopped with my diabetes work. I've just had to place it on a back burner for a while.

Expect to see and hear more from me in the coming months. Life is settling back down now. I've started a new job, in a new town. I've made a move several hours away. Once I get a handle on myself and my new life, I promise to be back into the D-OC, which I love and miss so much.

Until next time, I wish you all blessings and prosperity from above and a fantastic 2014.