Two Journeys

My life has been revolving around celiac lately. The only way I can explain it is that I am doing my best to learn as much as possible about celiac and the gluten-free diet as I can before I meet with the GI doctor and start the gluten-free diet.

That being said, diabetes hasn't gone away. It's still here. All the time. Being a total pain in the rear. BUT, I feel like I'm starting a new journey. For many years now, I've been blogging (although inconsistently) about all the things that I deal with in regards to diabetes. All the things that concern me about diabetes.

Now my journey involves living with and coping with TWO chronic illnesses. Both of them invisible, yet such a big part of my life.

Tomorrow is my first appointment with my new gastroenterologist and dietitian. I start a journey of a confirmed diagnosis, learning to live without gluten, and learning to pay even more attention to every morsel of food that enters my mouth.

I have had my pity parties. At least the "pre-gluten-free" pity parties. For now, I'm done. Now, I start the new journey. The new part of my life. It doesn't mean I'll never be sad again. It doesn't mean I won't have pity parties again (can anyone say "diabetes burnout?"). But it does mean that I am going to tackle this, like I have diabetes.

I'll do the best I can. I'll hate it. I'll love the things it brings into my life. I'll hate the things that are no longer a part of my life. I'll have good days and bad days. I'll sometimes be sick because of celiac. Just like I'm sometimes sick because of diabetes.

But just like diabetes had never stopped me, I don't intend on letting celiac stop me either. I'm already out there, online. I'm searching and making contact with others. Perhaps I'll find an online community like the D-OC. A community that will help me get through on the bad days, and will make me laugh and smile on the every day. I'll learn tips and tricks. I'll learn new ways to cook, and to bake (my secret passion) and maybe I'll share those so someone else out there, who has been newly diagnosed with celiac disease, will see that their life isn't over.

This blog has been diabetes for so long. It will still be diabetes, it just might be a bit more celiac for a while. And then one day I'll find the happy medium, and I'll share both sides of my story in equal parts, so others can share with me.

Fear in Food

When I was first diagnosed with diabetes, I was 4 years old. I was old enough to understand what sugar was and at that time, PWD avoided all refined sugar. I knew to say "I can't eat that," when offered a cookie or punch or something like a cupcake or candy bar.

Soon those around me adapted and life moved on. On top of that, we advanced in the world of diabetes and we learned to carb count and bolus and I could have refined sugar. For 30 years my life has been about what I put in my mouth, what my blood sugar is, and how much insulin to take.

But food hasn't really be a scary thing to me. I live and grew up in the South. Everything centers around food. Someone has a baby: bring food. Someone has a birthday: bake a cake. Someone dies: take food to the family. Someone celebrates a life milestone... you got it: food.

Even just having people over to play cards or monopoly involves food in the South. You have snacks out and drinks. It's part of being a good host or hostess. Basically, we gather, we eat.

Suddenly my life has become scary. Food is scary. Eating out with friends is scary. Having a party at work or friends over for game night just became scary. At first I thought to myself, "I will just have to eat at home more and make my own stuff." Not something I was thrilled about, but something that could be done, nonetheless.

But then, as a person who is proactive about their health does, I started reading on the internet and came across some sites that have me scared of my own home. My own kitchen. The place that I have always felt like I was good and decent and could bake up some love.

This site (to be honest, I got off the site after reading for a while and couldn't tell you what it was) recommended a complete ditching of basically everything in your kitchen. Including non-stick pots and pans and wooden utensils. It also recommended throwing out all condiments, deep cleaning your oven, and throwing all baking things (sugar, cornmeal, etc.) out as well and starting from scratch.
This terrifies me. Even my own kitchen isn't safe.

There is so much conflicting information out there on the internet. Some sites say to never eat at someone else's home. Some say to offer to help cook to be sure that food isn't cross contaminated. Some say, just talk with your host or hostess and explain. Which is true? Which is right?

There are the sites that say you should explain to your server when you eat out, IF you eat out. Some say you should insist on speaking with a manager or the chef directly. Some say to avoid eating out if at all possible. Then there's the fear of cross contamination of something as simple as a salad!! How?? Apparently if they mix a salad in the same bowl as a salad that had another dressing or croutons, there could be a chance for cross contamination.

Again, when do I stop being afraid of food? Currently, I'm still consuming gluten as I wait for my first appointment with the GI doctor, but I'm already slightly terrified of food. Is this what it's like to be diagnosed with diabetes as an adult?? For those of you who have been diagnosed with celiac, are you afraid of food? Are you afraid to eat food at other peoples' homes? Or out at a restaurant with friends? Does this fear go away?

Today is a scary and uncertain day. Tomorrow will be better. I hope. For now, I'm going to do my best to be brave in the face of this scary moment and scary life change and hope that things get easier as they go along.

The World Turned Upside Down

I’ve heard people talk about the shock of having been diagnosed with (or having a child diagnosed with) Type 1 diabetes. The anger, fear, insecurity, and uncertainty of being diagnosed with a lifelong illness can be a lot to deal with. Or so I’ve heard. I was diagnosed with Type 1 when I was 4 years old. I have some memories of my diagnosis, but overall, I remember very little about life before diabetes entered it.

Over the past 30 or so years, I’ve learned to live with diabetes. I know nothing else. I test, bolus, and count carbs like a champ (most of the time). Sure, there are up days and down days, but it’s my life. And it’s all I know. Anything different would be strange to me.

Back in the spring, I noticed I was getting unusually tired. The kind of tired that is abnormal, even for me (a girl who LOVES her sleep). When I went in for a regular check up with my PCP, I mentioned this and she tested me for anemia. I was pretty severely anemic. She prescribed three months of iron pills and vitamin C (it helps with iron absorption) and set up a follow up appointment for September.

I began to feel much better. Less tired for sure. I was convinced my iron levels had returned to normal, so when I went for my follow up appointment, my PCP shocked me when she suggested, strongly, that I be tested for celiac. Turns out that my iron was STILL low (though not as low as it was in the late spring). And my blood test came back positive for celiac.

And that’s when MY world turned upside down (I couldn't resist the Hamilton reference in the title). I always knew it was a possibility. After all, one auto-immune disease leads to another, right? I mean, we hope not, but the fact remains if you have one, the chance of another grow. I have fellow T1 friends with celiac. Friends who are D parents who have kids with celiac, and a friend from my childhood whose youngest son has celiac. It wasn’t a foreign term to me. But it was enough to know my world was not going to be the same. Ever.

According to all the official websites, celiac can’t be completely confirmed without a biopsy of the small intestine. I assume we’ll discuss that at my first gastroenterology appointment.  Also, I assume I’ll eventually be able to spell gastroenterology without spell-check, like I can spell endocrinologist.

For now, gluten is still in my diet. I’m awaiting instructions at my first gastroenterology appointment. I’m also trying to eat all the glutenous (is that a word?) things I can before they disappear from my diet forever.

When I found out about this a week ago today, I had a rough few days. But I am blessed with wonderful friends and family who are both giving me support, and encouraging me. My frame of mind is much better now, and the more research I do on celiac, the more things in my life (and health) I think could be attributed to celiac symptoms, that on their own meant nothing.

This is going to be a big learning curve. This is not going to be easy. My world is never going to be the same. But the thought of being healthy and happy and having energy give me so many things to look forward to.

I know someday I’m going to look back and say, “Life before celiac was normal? No, my life is normal now.” Just like life with Type 1 is my normal, sometime life with celiac will also be my normal. I’m scared. I’m hopeful. And I’m certainly going to be one that is going to need a ton of support. But if I know the D-OC, I know I’ll get the support I need and then some.

And this blog just suddenly became a diabetes AND celiac blog…..

Friends for Life 2016

For many years (at least most of the ones that I’ve been a part of the D-OC), I have heard about Children with Diabetes Friends for Life conference held each year in Orlando, Florida. So many of my best friends have gone, many times.

I made excuses. A couple of times I had legitimate vacations plans during the time of the conference. The rest of the time, my many trips to New York City seemed to financially trump my need to go to a diabetes conference in Florida. The cost scared me (or what I thought the cost would be).

A little over 2 years ago, my friend Becky asked me if I wanted to go to Friends for Life. It was too quick for me to get the money together to make the trip happen, so we decided to make this a goal to attend in 2016. The reason for the length of time was to save the money. The thing that made this the most awesome plan? Becky and I had never been in the same room before. And Becky is from England.

Becky and I “met” on twitter (like many of our fellow D-OC members) and then began reading each other’s blogs and became friends on facebook. We bonded, not just over diabetes, but our love of theatre. We began Skyping a few times a year and that’s how the trip to Friends for Life began to come together.

When the trip finally rolled around, it was something unlike anything I have ever experienced before. First of all, meeting Becky in person for the first time was so amazing. It was literally meeting an old friend.

Second, getting to see so many of my other D-OC friends, some of which I hadn’t seen in a few years, was a boost to my mental state. There’s nothing like seeing old friends.

But the most amazing thing was being in a place where there were literally HUNDEREDS of people who “get” what it’s like to live life with diabetes (or love someone who does). So many green bracelets symbolized those of us living with diabetes. Our loved ones wore orange. And everywhere I turned I didn’t feel the need to explain when I started to beep. Or needed to test. Or needed to treat. Or just generally felt like crap because my blood sugar was through the roof.

Meeting new friends was so much fun. I met my new friend Stephen for the first time ever when he stopped me in the convention hall to ask me if I was going to ever start blogging again. I’m ashamed to say, I hadn’t put two and two together to realize that this gentleman has been regularly commenting on my blog for years. I nearly cried. It has been so long since I blogged, and I often just thought no one missed my blog, or even remembered it. To have Stephen approach me was one of the best things that has ever happened to me (relating to my blog).

I met Phyllis and Kim and Sarah and Nia and Sue all for the first time. I saw old friends again and got to see my “twin” Karen and her lovely husband. I got hugs from Kelly and Kerri and Mike. I met Alanna. And among all of these people, I’m sure I’ve left someone out. I do apologize, but I can promise meeting you was a joy and truly touched my life.

When you live with diabetes, it seems like you’re constantly explaining yourself. And for a brief few days, at a conference in Orlando, there was no need to explain. That in itself was a beautiful and wonderful thing.

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.

Close to Home

Over the weekend I got a message on facebook from a friend of mine. One that isn't linked to my "diabetes world." We've known each other for a few years now, and met through mutual friends. He's an awesomely fun person to hang out with, and a person I don't get to see in person near often enough.

This message, however, wasn't a happy message. He sent me a message because his young niece had just been diagnosed with T1 diabetes. She was very sick and in ICU. And he was worried.
As almost all of us know, until T1 enters your life, you have very little need to know anything about it. All my friend knew was that I had diabetes and he had questions.

I did what I could to answer questions. The most heartbreaking and basic questions.

"Will she have to take shots?" "Will she ALWAYS have to take shots?" "What does this mean?" "How will she deal with this in school?"

I answered them the best I could and as his family lives sort of close to me, I told him to pass along my contact information to them in case they needed to talk or had questions. I told him to let me know if HE had questions.

This disease isn't fun. I "meet" people all the time who have fallen into this wild world of diabetes. But it's very, very rare that someone I already know (or know of) gets diagnosed. And for some reason this weekend, it hit me hard.

This disease doesn't pick favorites. It is as likely to happen to someone I know as it is to someone I don't. When it hits this close to home, it hurts my heart a little more.

Do I think this little girl will be okay? Sure. Diabetes isn't a death sentence like it used to be. Do I think she'll live a normal life? Yeah...as normal as our d life gets. It's our normal. But my heart cracks just a little more knowing that another family is going to have to learn to count carbs, bolus, give injections, test at midnight, learn what an A1c is, go for yearly eye exams, learn about basal testing, know what terms like "CGMS" and "D-OC" and "endo" mean.

I'm not sure that this family will ever contact me. If they don't, I hope they do find the D-OC. It's something I wish had been around when I was diagnosed, and I'm very glad is around now. If there's a silver lining to a T1 diagnosis, it has to be the D-OC.

Sort of Wordless Wednesday

When you see your favorite low glucose treatment on the "last chance" rack, you buy them all. 

Cereal: The Devil's Food

“Hi. My name is Cara and I’m a cereal addict.”

I feel like I should be in some sort of a recovery program. Ever since I started monitoring my blood sugar super closely and got on an insulin pump, it became apparent that cereal was a TERRIBLE thing for me. Non-sugar cereals make my blood sugar crazy. The less sugar and more whole grains, the less crazy. But still crazy.

Sugar cereals make me so crazy that it’s scary. My blood sugars will rise quickly, sometimes as much at 150 points in half an hour, and stay up for HOURS, no matter how much insulin I take.

Because of the major issues I have with controlling my blood sugars when I eat cereal, I tend to stay away from it. I will indulge occasionally, but I just don’t do it because of all the horribleness that comes along with it. It’s just not worth it. Most of the time.

Sometimes I’ll get a box of rice crispies or cheerios and eat them. I LOVE them. I have to limit myself, but I do it. Recently I bought a box of rice crispies. When they were gone, I bought another box. When those were gone, I bought some corn flakes. (Are you seeing a pattern here yet?)

And then, on Friday, it happened: I found the small boxes ($1) of Cap N’ Crunch cereal on sale at the store. I refuse to buy a big box, but a small box… okay. I bought five boxes.

Saturday morning I had a bowl (translate: two large bowls) and bloused (I did a S.W.A.G. bolus; don’t know what that is? Click here where you can download a PDF of awesome d terms.), and went about my day. I knew I was going to spike. But I had plans to clean my house and figured it would help. But within a couple of hours I felt like crap. My CGMS said I was above 400 (it doesn’t give specific readings above 400, just an “above 400”). I checked and got this:

After having a mini-melt down, and suddenly understanding why I felt like throwing up (naseuea comes with high blood sugars sometimes), I gave an injection correction (I feel like that sounds lie something from School House Rocks!) and waited. Over the day I waited and bloused and waited and bloused. And tested and tested and tested. At one point I was somewhere between small and moderate ketones, but it didn’t last long (thankfully).

And it was nearly 12 hours later before I came down. And crashed at somewhere around 50. The blood sugar roller coaster is no fun, but in my earlier mentioned melt-down, I also did this:

Yes, you see that right. That’s a garbage bag. With every box of cereal in my house in it. In full disclosure, I still have the bag, but only cause I’ve not been to take off my trash yet. Oh, and pay no attention to my bare feet in the picture. :)

Honestly, I have a feeling I went from being sort of on the “no cereal” bandwagon, to falling off completely. And in order to get back on, I’m giving up cereal, cold-turkey. My problem is that I LOVE cereal. I can’t stop with one bowl. And I want to eat it ALL the time.

So much like a person addicted, I’m quitting. Cold-turkey. I won’t lie, I kind of want to go get that cereal bag. But I’m not going to do it. Until I can break myself of this horrible cereal eating habit, and learn to eat small amounts only occasionally, I’m done with the evil thing.

I think that a lot of times, we people with diabetes like to indulge. And it’s OKAY. It’s not that I can’t have cereal. It’s that I don’t particularly want to deal with the fall-out that comes with it. And I understand that I don’t have enough self-control to make myself stop with one SMALL bowl of cereal. But sometimes, even though we know better, we do it anyway. Perhaps it’s diabetes burn-out, in a way. Perhaps it’s just a “normalcy” thing that we want. I don’t know.

But for now, I’m on the “no cereal” band wagon again. My name is Cara and I’m a cereal addict. It’s been four days since my last bowl.

*I did NOT write this to make light of those suffering from actual addiction issues. As a person who knows and loves several different people who are recovering (or still) addicts, I encourage anyone dealing with these issues to seek help.*

Strip Safely

Test strip accuracy is important to me because as a person with diabetes, I test my blood sugar. As a type 1 diabetic, I test my blood sugar sometimes as many as 12-15 times a day. True, with my constant glucose monitor (itself with accuracy issues) I sometimes test less. But no decision I make during the day (or night) is made without regards to what my blood sugar is.

The recommended range for blood sugar for a person with diabetes is 80-120. Some people say 70-130. Either way, these are ranges we should be shooting for our blood sugars to be a majority of the time. Anytime you deal with insulin (and food/stress/illness/other medications/the weather/the house that venus is currently in) blood sugar levels of a T1 diabetic is going to be outside of those ranges at times. But most of us strive to keep as tight of control as possible for our health.

Blood sugar levels that are out of control can cause major problems. In the immediate it can cause death, and in the long term it can cause complications which lead to death. And most of us don’t have a death wish. We want to live a healthy and as long as possible.

I’ve had T1 diabetes since February 5, 1986. It was a few months before my 5th birthday. I was practically a baby. And I was struck with this disease because my body decided to attack the insulin producing cells in my pancreas. Because of that my parents had to give me insulin injections, monitor what I ate, and test my blood sugar many times a day.

As time progressed I grew up. I learned to drive. I moved away to college. I’ve gotten a job. I’ve purchased a house. I’ve traveled the country with friends (and even sometimes alone). These are all things that a person without diabetes could do and no one would think twice about it. People living with diabetes do these things regularly and while some people may think nothing about it, our friends and family know the truth. Living alone, traveling, driving a vehicle, getting married, having children, and many other activities that are “normal” for most, take way more energy thought and planning for those of us living with diabetes.

Where is all of this going? Nearly every decision I make involves a number. My blood sugar number. Insulin keeps me alive. But it has the ability to kill me as well. Too much, or too little, insulin can lead to serious sickness and even death. This means I have to know how much insulin to take. How much insulin I take is determined by a lot of scientific math….and my blood sugar number.

Let’s just say my blood sugar is 120. This is good…right? It could be. But it could also depend on if I have “insulin on board” (this is insulin still working actively in my system), if I’ve just eaten, if I just completed exercise, if I’m getting ready to do exercise…among other things.

That’s a lot of variables, isn’t it? Think that’s bad enough? Try this:

Back to the beginning. My blood sugar reading says I’m 120. I’m getting ready to go on a road trip. It’s going to be several hours of driving for me. I am going to eat, right now. Forty-five grams of carbs. This means I’m going to give (hypothetically) 6.4 units of insulin for the food. And according to my goal blood sugar of 100, it also means an extra 0.5 units for the 20 points my blood sugar is over 100. So… 6.9 units of insulin, food, and driving.

Hypothetically this would work perfectly. But what if my meter reading was wrong. What if my blood sugar was actually 80, instead of 120? With the food and the insulin I took, a low blood sugar might not happen right away, but when my insulin peaks and my food is gone, that extra 0.5 units of insulin I took for that 20 points I was over 100….could drop me as much at 30-50 points. Which means an 80 could eventually be a 30 or a 20.

If I wasn’t passed out with a blood sugar of 20 or 30, I could be. If I didn’t catch the low blood sugar, it could be disastrous. To me, to other drivers, to people in the vehicle with me.

And 80 instead of a 120? That’s a 40 point variance. It could be enough to kill someone. Yet current FDA guidelines have a 20% ± variance. That means my 100 could be 120 or 80. And even worse than that? The FDA enforces these guidelines before the strips can hit the market…but they do NO enforcement after they are being manufactured. Which means even though a company may be able to meet the guidelines the FDA requires (even though they aren’t really strict enough) before they hit the market, they don’t have to meet them after they being manufacturing. There’s no monitoring to ensure that they are sticking to the guidelines at all.

This is a serious problem. I believe that there are lives that are hanging in the balance. I believe there are people who could very well die from this. If a medication was hitting the market and causing a huge risk of death to the people taking it, the FDA would step in and put a stop to it. Lawyers would have infomercials on at midnight telling you to call them if you took it so that they could help you sue the company.

Why isn’t anything like this happening with diabetes testing strips? What is it that keeps the FDA from monitoring the post production requirements of meter strips? What is it that keeps the FDA from making the guidelines even tighter for strip accuracy? Why isn’t anything being done?

I’m not sure what the reasoning is. It seems quite ludicrous to me. But it’s happening. And we need to do something about it. If we stand up and say something. If we show examples of the danger and the immediate risk. If we raise our voices, perhaps someone will listen.

My fellow D-OC members are raising their voices. They’re writing letters on their blogs and to their elected officials and to the FDA. They’re putting things out there. And now it’s my turn. This is my first letter, to anyone who might stumble across it. I’m setting myself a personal goal to send emails to all of my elected officials and to the FDA with my concerns for test strip safety.

I don’t want to go to sleep one night, thinking my blood sugar is fine, and not wake up the next morning. I don’t want to do that to my friends or my family. I don’t want to break their hearts in that way. I don’t want the hearts of other friends, family, and loved ones to break if they lose someone to diabetes if there’s any way it could have been avoided. I’m standing up and raising my voice for myself and for others living with diabetes. We DESERVE accuracy. There are enough variances in diabetes without worrying if our test strips are giving us accurate results as well.

For more information on Strip Safely, an inititive to improve strip safety and accuracy, go to their website. They also help tell you how YOU can make your voice heard. This post is my July entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/july-dsma-blog-carnival-3/.

Technology is Scary: A Skeptic Changes Her Mind

I was diagnosed with diabetes in 1986, a few months before my fifth birthday. I have very, very few memories of my life before diabetes. It’s just always BEEN. Diabetes has been a part of me so much, that I’m not entirely sure who’d I’d be without it. I’m throwing a wild guess out there that I’d have more money, less stress and get more sleep, among other things. But, it’s nothing that I can’t deal with.

When I was first diagnosed with diabetes, I was on ONE injection per day of the (now) antiquated NPH insulin. My doctors thought that a 12.3 a1c was “in control” enough to take my tonsils out 8 months after I was diagnosed. Life was different. Diabetes care was different.

Sometime after that (I’m not sure on how long, and my mother is a little foggy on the details) I went to two injections per day of NPH and Regular insulin. I stayed on that regimen, along with a strict eating schedule and fights with my mother when I was (as kids often are) NOT hungry and didn’t want to eat what was on my plate.

When I was in high school was the first time that I really heard of an insulin pump. They were just really starting to get “popular.” I didn’t know much about them. Other than that I did NOT want a needle in me all the time (I’m not sure if that was the case at the time, or if that’s just what I thought because I was uninformed) and I didn’t like the ideas of being attached to something all the time.

For years I resisted an insulin pump. During those years I also dealt with losing insurance, getting it back, losing it again, and getting it back again, so my diabetes care was spotty and I didn’t see and endocrinologist regularly. But I did meet a lady that I went to college with who also had diabetes. We had many classes together because we had the same major and ended up graduating within a semester of each other. She was a “non-traditional” student, meaning that she was older, married, had kids and did not live anywhere near campus.

But despite those differences we became friends. I got along with her better than I did many of my peers because I was also working my way through school (though it was only me I had to worry about) and had a semi more grown up view of life than many of the people my age. I say semi because I was still very much a college student. LOL.  

One thing that this lady had was an insulin pump. I’d never really seen one before. She told me how much she loved her insulin pump. She showed me how hers worked. She was the first person that I ever knew that made me think “I might actually like to have an insulin pump.” That was the first time I didn’t think an insulin pump was scary.

During this time, insurance coverage for me was sketchy, so it would be several more years before I decided to take the plunge and join the world of the insulin pumpers. But I did it, not because I heard about this cool new technology. I did it because I saw someone LIVING with this cool new technology.

Over the past year or so, people have been talking about the bionic pancreas thing. I say “thing” because I don’t totally understand how it works, but I get the basics. When I first heard about it, I thought “That’s a cool idea, but I don’t trust it. I don’t want a machine making all my decisions for me.” But being a part of the Diabetes Online Community has put me in the position to know and to “know” people who are at the front lines of this new technology. There are people who are part of clinical trials. And what I’m hearing back makes me think, “I might actually like this.”

Of course, there are a ton of things that have to happen to make this machine something that I can get. And afford. More testing, more trials, more trials, more testing. And then the FDA. And we all know how long it can be for the FDA to get anything done. By the time they do, there may be some other top notch technology waiting in the wings. I don’t know.

But after reading more and more about people that I “know” and that I know, who have been a part of these trials, I have to thank them. Thanks for being that person that opens my mind to new technology. New technology that I’ll hopefully be able to get at some point. Technology that might have as big of an impact on my life as switching from multiple daily injections to an insulin pump.

If I can’t have a cure, steps forward in technology are nice. Huge steps forward in technology are life changing. And thanks for those who are sharing your experience so people like me (the skepctics) can have a more positive outlook on what's coming (we hope). 

Sometimes It's Who You Know

Every so often I go get fast food for breakfast. I know, I know. It’s not healthy. It’s not good for me. It’s not always good on my blood sugars. BUT, I do it. And I’m guessing that you probably do as well. I live in the same town I grew up in. I left for a while and ended up back here for a job and haven’t been able to escape since (those of you that know me, know what I mean by that!).

There are some good things to living in a small town. One of them is having everyone know you. This is also a bad thing at times. But the occasion that I’m writing about today is a GOOD thing. I was headed through drive-thru at a local restaurant. I happened to have worked at the summer after I graduated high school. Up until a few weeks ago, it was the only place in town that had Diet Dr. Pepper. I LOVE Diet Dr. Pepper. More imporatanly, I love anything diet on tap (?) that’s not Diet Coke. Please forgive me you Coke lovers. But I love finding Diet Dr. Pepper. I order, every time, very clearly “A medium Diet Dr. Pepper, please.”

On this particular morning, I pulled around to the drive thru window and I knew the lady who waited on me. She’s the manager of this particular restaurant. She’s also the person who hired me when I worked there. And most importantly, she used to baby-sit me when I was little. Not too long after I was diagnosed with diabetes. She was in high school, I was in very early elementary school and she lived right down the road from my house. She would take the bus home and then walk down the street to my house and watch me until my mom or dad got home. Or she would 

come during the summer and stay with me when my parents both worked.

It wasn’t an all the time thing, but it was enough that I remember her very well from that time and I’ve always had a place in my heart for her, especially after she hired me when I was young and dumb. J The great thing about having her around that particular morning was that she started to hand me my drink out the window (she hadn’t taken my order) and before she even let go of it she said, “this is supposed to be diet, right?” “Yeah,” I said.

She looked over her shoulder and said to the other woman working, “This is supposed to be diet. Is it?” Of course, it wasn’t. And then the best thing ever happened. She said, “She’s got diabetes. This would mess her up for the rest of the day.” And then she got me a new, DIET drink.

Now the truth is, I would have checked the drink before I pulled away from the window. I would 

have caught the mistake. But I didn’t HAVE to. She did it for me. And cared enough to make sure it was right. So even though I may complain about my small town sometimes (okay, a LOT of times), it isn’t all bad. There are times it comes in down right handy when people know everything about you.

Even though I’m sure she’ll never read this, I thought I’d share this totally wonderful experience with you. Because I hope that there’s someone out there looking out for you as well. 

Opinions and Name Changes

Even though I’ve been slightly detached from the diabetes online community in the past several weeks, I’ve seen some talk about the petition going around that seeks support to have the names of T1 & T2 diabetes changed. This grabbed my attention almost immediately. I started searching around on the different posts that people were putting up, and even received an email from the women behind the movement and I read it as well.

I did some research, though for the most part I’ve been fairly quiet about it. Others in the D-OC have done a much better job writing about this and stating their opinions, but I wanted to state my own. It’s simple. And it’s nothing that hasn’t already been said. But I feel like I should say it from ME. I want my words on this.

First off, I was diagnosed with diabetes in 1986. I was just a few months shy of my fifth birthday. It was called “juvenile diabetes.” The pediatric endocrinologist that I saw told my parents that my pancreas probably hadn’t worked well from the time I was born, but I hadn’t been big enough for diabetes to show up yet. He also had me on one injection of NPH insulin per day. Barely 6 months later I had my tonsils taken out (due to chronic illness). My hospital records at the time show my a1c was 12.6 and in those records it stated “diabetes is finally stable enough to perform tonsillectomy.”   

Just in reading the above, if you know much about T1 diabetes, you will see about a million things wrong with that. I was sick a LOT as a child (a result of being a preemie). My guess is that one of my many bouts with strep throat triggered the deadly attack on my beat cells, resulting in my diabetes. We all know an a1c of 12.1 is far from stable and that, even in 1986, one injection of NPH per day wouldn’t cut it.

But it’s what we had. It’s what we understood. Eventually I went to two shots per day (of a mix of NPH and R). Still not great, but it was what we had. I rarely went to a pediatric endo. I ended up in a coma when I was 8 because no one ever taught my mother that just because I was sick with a stomach flu didn’t mean that I didn’t need insulin (in her mind I wasn’t eating… I didn’t need insulin).

Life was different. I lived for a few years before I remember being called “insulin dependent” and many, many more years before I was dubbed “Type 1.” But it’s was what we knew. It was what we had. Until I joined the D-OC, I’d never heard of an adult being diagnosed with T1 diabetes. I’d never heard of a child being diagnosed with T2.

Knowledge was different. Education was different. And even now, I feel like my own education about diabetes is constantly evolving. It was only a few years ago, I am ashamed to say, that I even mentioned about a name change. The conversation started somewhere online and I said, “Heck, yeah!” But I was wrong. I’ll admit when I am.

I am not skinny. If I told a random person I had diabetes, it would be very easy for them to look at me and say, “If you’d lose weight, you’d be cured!” In fact, I even had a “health coach” tell me I could come off insulin if I lost weight….and she had my paperwork in front of her with my T1 diagnosis on it.

I have friends who are T2 who are not overweight. I have friends who are overweight that are not T2. I have friends who had diabetes when they were pregnant. I have friends who once took insulin for T2 and now take nothing…not even a pill. But the fact is that we ALL have diabetes. We ALL put up with media, medical, and public misinformation. We have ALL lost friends to this disease (or know someone who has). We ALL need to take a stand. For each other.

Of late, I have been very much on my soap box about the way that T2 patients are treated. By medical professionals, the media….and even some of us in the D-OC. I would love to have an off line advocacy in my area that dealt with informing T2s and informing medical professionals about T2.

The truth is…I feel like this name change petition is an attack against T2 patients. And I don’t like it. People with diabetes live with a HUGE amount of guilt, no matter what type of diabetes they have or when they were diagnosed. I think T2 patients often get even more of this guilt piled on them by the media and even their medical team.

Would I love to have the media, the general public, etc know that I have diabetes caused by an auto-immune attack on my beta cells when I was a kid? Sure. But making them understand that isn’t about changing the name of the disease. It’s about educating people about diabetes and the different types there are. It’s about educating people that just because someone is overweight, doesn’t mean they could “eat less/diet/exercise” and make said diabetes “go away.” It’s about educating them that just because someone is thin or athletic doesn’t mean that they have “the bad type” of diabetes.

Diabetes is an extremely complex disease with extremely complex treatments and extremely complex emotional issues that come along with living with a chronic illness “every day, every hour, every minute.” We do NOT need to place something else that will ultimately cause more division, more confusion, and more discord. We should be pulling together as a community and advocating for more research, better technology, better treatment, and more education for the general public.

I know I’ve only said what others have said. But that’s just my opinion and I really felt the need to write about it….and that’s what a blog is for, right? 

Also, on a completely separate note: This is my 500th post. Wow.

Six Years...and a Day.

I missed it again. I seem to miss it every year. Yesterday my blog turned six years old. I have a hard time wrapping my head around that. Six years is a long time to keep something up. I'll admit, my blog and I have had our ups and downs. In fact, the past month or so, we've barely communicated. But I always know that my blog is there when I need it. Something to pour out my frustrations and my triumphs. Something to share a fun story with.

And in return, it gets to you. I've accomplished so much and met so many people since I started blogging. I've done things I never would have done, if it weren't for that day that I sat down and created the blog that essentially changed my life.

Diabetes isn't the best part of my life. But it also isn't the worst. And diabetes brought me to blogging, which brought me to some of the best friends I have. All of which I wouldn't know otherwise.

I love that I've made so many friends, been so many places, shared so many stories, and had so many experiences because I started blogging.

And be assured, just because I've not been writing much doesn't mean I'm abandoning my blog. Just taking some time to focus on other things in my life.

Tonight I think I'll have some ice cream to celebrate six years and one day of blogging.

Happy blogaversary to me!

Announcements

It's all over the internet today. All over twitter and facebook. Probably all over media outlets (I wouldn't know as I rarely watch television or pay attention to much news). The announcement that was hinted at yesterday, and release today from the Diabetes Research Institute. 

I won't lie. I had a hard time yesterday, after reading what was being hinted at. That four letter word that many of us don't even like to whisper. Because so many of us were told "5 to 10 years." and for many of us, it's been decades more than this. 

The first thing I did this morning when my alarm clock went off was pick up my smart phone and opened facebook. I knew the "announcement" would be there. I knew that it would already be spreading like wildfire. And it was there. And I watched it. And the ENTIRE time I watched it, I felt robbed. I felt disappointment (and relief, but I'll talk about that feeling later, in another post). 

Ninety percent of what was in that video announcement from the Diabetes Research Institute was information I'd heard before. The ten percent that wasn't something I'd read or heard before was simply an expounding on information that I already KNEW was being worked toward.

And nothing in it was actual proof that there had been any major breakthrough. Just information that they are working toward something that they feel is a good step forward. And then they asked for money. 

It went from emotional robbery to a whole different kind of robbery. 

I understand that the Diabetes Research Institute needs funding. I get that. I'm proud to say that I support several different fund raising programs that DRI gets money from and I've even donated money directly to DRI in the past. I am GLAD to help raise money to find a cure. And to advance technology and treatment in the mean time.

A fundraising announcement to help fund a different (or in this case, more advanced) line of research is NOT a major announcement. It's not a breakthrough. There's no need for an embargo until a specific date or time.There just isn't. 

I want to have hope that a cure will happen. But after 27 years of living with diabetes, I really don't know that it will happen in my life. I hope it does. But I am not sure that it will. And I've accepted my reality. It's all I've ever known. 

And while I'm terribly proud that they are continuing to research and making positive steps forward, I just felt like this morning's "announcement" might has well have been them telling me that mice have been cured. It's something I already knew.