Responsibility

Responsibility is a big word. It is a word that I think many people don't like to hear. But it something we all have, even if we choose not to live up to it. Some responsibility is put on us by society. Some by our families. Some by our friends. And sometimes responsibility is something that we put on ourselves.

I started this blog over 5 years ago. Blogging was something I did for myself. I needed it. Blogging, for me, was therapy. It was a way to have a diabetes support group. It was a way to have a therapist sitting in a high backed leather chair with his notebook while I talked. Did you guys know you were my therapists? You were. You are.

After a while I realized that blogging was more than therapy for myself. I realized it was therapy for others living with diabetes as well. If my reading YOUR blog is therapy for me....wouldn't you reading MY blog be therapy for YOU? Okay, I know that's not always how it works, but the premise is there. Basically, we are a community of people who are hear to help each other. To listen, to support, to be a voice for each other.

We all know the lack of mental health care that goes on with diabetes. Doctors address our physical health, but all too often over look our mental health. For me, and I know for many of you, that is where the D-OC comes in.

I know we all have our "thing" when it comes to blogging. Some of us are more inclined to write about news relating to diabetes. Some of us write about being parents or caregivers to someone with diabetes. Some of us are more concerned with diabetes research or technology. Just like in real life, we all have our areas of comfort and expertise.

For me, it is about letting people living with diabetes and caring for those with diabetes know that they aren't living this life by themselves. There are so many others out there going through the same things. It's part of the reason I started the Your Voice project. And while it may have slacked off after a while, I still believe in Your Voice and I believe in what this community is doing online and offline.

Cherise and DSMA and Blue Fridays

Kim and You Can Do This

Karen and Diabetes Blog Week

LeeAnn and the Diabetes Postcard Exchange

And I know there are many others out there that I'm forgetting. Great projects and ideas. But what do all these things have in common? They are about helping people find support and understanding. They are about people making connections online and in the real world. It's about filling in the gaps.

At some point in my blogging "career" (can I call it that? It feels like one) I could have stopped. There are even times now where I just want to throw in the towel and walk away. There are times that I don't want to deal with diabetes at all, let alone write about it in my free time.

But that's where I feel responsible. I feel responsible to the people who read my blog (however many there are of you). I feel responsible to the newly diagnosed person (or parent) who googles "diabetes" and manages to run across my blog. Six years ago I felt completely alone with my diabetes. I feel responsible to make sure the no one with internet access and a search engine ever as to feel that way again.

Sure I want doctors and other medical professionals to address the mental health needs of people living with diabetes. But until that becomes a priority in their world, I feel it's the responsibility of the Diabetes Online Community to fill in the gaps the best we can.

We are our own support group. We are our own advocates. We are our own health care provider. But we're also each others'.

D Blog Week: Diabetes Hero

Our last day of Diabetes Blog Week! Thanks again to my great friend Karen at Bitter-Sweet Diabetes for organizing this wonderful event, yet again.

Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??



You know, there are so many diabetes heroes out there. There are the people who are LIVING with diabetes every day, the people who work in the healthcare field (and give it their all) to help care for people living with diabetes. There are are people who work tirelessly to find a cure for diabetes and to promote technology in the meantime.

But I think my heroes are the Type 3s. The people who LOVE those of us with diabetes. The parents, the children, the significant others, the friends, co-workers. The people who put up with our mood swings, and bad days, and health emergencies. They are the ones who don't HAVE to deal with diabetes, but do so anyway.

I'm thankful for my D-OC, who is there for me when I need mental and emotional support. But I'm truly thankful for my friends and family that I'm around every day. The ones who worry and pray for me. When my co-worker calls me when I'm running late for work, just to make sure I'm okay. That's a hero. When my mom listens to me rant about crazy blood sugar days (and I KNOW she prays for me all the time). That's a hero. When my best friend promises me we'll get to the airport two hours early, to make sure I get through security okay. That's a hero.

I'm thankful and blessed to have the D-OC. But I'm also thankful and blessed to have the Type 3s in my life. I hope they all realize how much I appreciate them and love them.

Remember to check out all the other great posts about today's topic by clicking HERE.

D-Blog Week: Saturday Snapshots

Day 6 of Diabetes Blog Week

Back for the third year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

I often think that the way we picture things can help us in our attitude about diabetes. The ugly truth about diabetes is presented to us on a daily basis. Every high. Every low. Every bad A1c. Every newly diagnosed complication. Every story about so-and-so's second cousin twice removed that "lost his leg" or "went blind." It's around us.

Today I'm choosing to show pictures of the good thing about diabetes. And only the good things.

These are the wonderful pictures of the best part about living with diabetes. Each friend I make is another positive point for living my life with diabetes. Because it would have been a miracle if I'd met any of these people....except for the diabetes that brought us together.

Once again, click HERE to see more posts on today's topic.

D-Blog Week: What They Should Know - Guest Post

My lovely friend Sherry, who has blogged for me before on my Your Voice project, was kind enough to submit another post to me on today's Diabetes Blog Week topic. As always, I am still accepting posts for the Your Voice project. And THANK YOU to Sherry who brightens my day more times than she probably realizes.

The grossly uninformed public! I think this is one of the hardest things for me in the management of my diabetes.  I can handle the highs, the lows, the shots, the constant, unrelenting vigilance that one has to put into managing this disease- and I do fairly well with this most of the time. My biggest wish is that people would understand this ONE BASIC CONCEPT: how to treat a low! 

 

But the one thing that can send me reeling is people.  Misinformed people.  They make me wild!

 

I love to square dance and do it most every night. This is, for me, 12 hours after the start of very busy days.  I work full time as a mother to a special needs child who can do nothing for himself.  He is almost as big as I am now, and it takes all I have to handle him on top of my Type 1.  By the time the dance begins at 7 p.m., I’ve already put in a long hard day full of lows and highs and all the other junk we put up with as PWD’s.  I’m also the line dance leader between the square dances, so I get no breaks.  It’s no wonder I crash so often at a dance.

 

Herein lies my worst diabetic problem…..people who don’t understand diabetes and deny me what I need because of their misinformation.

 

I was low and heading lower the other night at the dance so I slipped into the kitchen to grab a little snack.  I’d already treated the low but just needed a little something with fat in it to hold that number up for a while.  I chose a small cookie and proceeded to munch on it.  Enter the PERSON.  This person, who dances often with me, immediately began scolding and reprimanding me with the familiar litany we all hear so often “You’re diabetic. You aren’t supposed to have sugar. You better put that cookie down.  If you hadn’t eaten so much sugar in the first place, you wouldn’t be diabetic now.”  And so on.  Blah. Blah. Blah.

 

Being as low as I was at that moment, I didn’t respond.  I ate the cookie and went out to lead the next dance.  Thankfully, I was too low to be mad at the PERSON right then. 

 

Later that evening, when we were finished dancing, I decided it was time to talk to the PERSON.  I went over and asked for a few moments of her time.  This is what I said.  “While ago, you fussed at me for eating a cookie with sugar in it.  You said that diabetics should never have sugar.  I just want you to know that that is false information and it could possibly cost me my life!” 

 

She was silent for a moment, but then said, “Well, I know that diabetics aren’t supposed to eat sugar.”

 

Once again, I told her that that was false information.  Diabetics can eat anything in the world that anyone else can eat. To borrow a cute phrase I heard online once, I told her that there are two things that diabetics should NEVER eat.  Those are: poison and cookies made with poison. She looked stunned.  She then said, “Why did you say that thing about costing you your life?”

 

I told her that when my blood sugar drops so low, my body can’t fix it and I will pass out and possibly go into seizures and cardiac arrest.  I have to give myself some sugar to prevent that from happening.  My body lacks the ability to feed itself to keep from having these low blood sugars.  People without diabetes would never experience such a critical issue with blood sugar.   

 

She was curious, but still very defensive. I am with these people almost every night dancing, so it is so critical that they understand the basics of low blood sugars.  If this person had insisted on my not having something sweet, as she did another time when I was really low, it truly could have very serious consequences.  Thankfully, the other time this happened, there was a nurse at the dance that knew how to handle a low and took care of me while she gave a good lecture to this person.  Very thankfully…..because that time I was nearly incapable of helping myself.

It scares me so much to know that so few people understand the basics of this disease and have misconceptions like this that could potentially cost us our lives by denying us sugar to treat a low.  It really scares me to exercise two and a half hours every night with some of these folks!

This is the hardest thing of all about diabetes for me.  I wish folks would just understand the basics. 

Thanks again to Sherry for jumping in on Diabetes Blog Week and allowing me to share yet another piece she's written. And just a reminder, more posts on this topic can be found by clicking HERE.

D-Blog Week: What They Should Know

Day 5 of Diabetes Blog Week

Today let’s borrow a topic from a #dsma chat held last September. The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”. Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything.




There are so many things that I wish people knew about diabetes. I'd love for people to know that "curing" diabetes isn't as easy as eating healthy & exercising. I'd love people to know that I didn't ask for diabetes. I'd really love for people to understand that NO ONE asked for diabetes, regardless of their type of diabetes.

But mostly, I think I'd like people to understand how exhausting diabetes can be. Having diabetes is like having an infant and a hormonal teenager attacking your body at all times. Some days I'm just TIRED. While my blood sugar may get back into range after a low, my body doesn't recover as quickly.

After a low earlier this week, my blood sugar was back in range within half an hour. But my body was exhausted and I had a headache for most of the rest of that day. I wanted a nap and an aspirin. But I couldn't get either. Because even though diabetes attacks me, the world doesn't stop. I still had to work, go get my hair done, blog, and meet my family for dinner.

After a day of high blood sugars, it's much of the same. Exhausted. Sluggish. Sometimes I think my poor body just wants a break.

I don't like to talk about diabetes being difficult. I don't like to complain. I don't want people to think that my highs and lows are my fault. I don't like people to worry about me. But the fact remains that diabetes can keep you up nights, make you want to sleep during the day, make you feel like you've been run over by a truck, and make you not trust your own body.

So while the general public is blaming people with diabetes for bringing it on themselves, we are living with this every day. Do you think that if we could escape the constant annoyance and exhaustion that we wouldn't do it? Of course not. We'd do whatever we could to get rid of diabetes. If it were possible.

And while I agree that some diabetes (not mine) can be treated with diet and exercise, not all can be treated that way. No Type 1 can treat this way, and only SOME Type 2s can treat their diabetes by this method.

So take into account all the things that people with diabetes are living with and dealing with every single minute of every day and withhold judgement. NO one wants diabetes. No one.

Remember, you can read more blog posts on today's topic by clicking HERE.

D-Blog Week: Fantasy Diabetes Device

Day 4 of Diabetes Blog Week
Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary. Tell us what your Fantasy Diabetes Device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?



There are so many fantasy devices that I would love to have. I could go on and on about what would be perfect, but I'm not sure where to begin and where to start. Back in December of 2010 I wrote a post asking Santa for a special designed insulin pump & CGMS. I'm going to repost that here because I STILL want this. I'm still waiting!

Dear Santa,

I’ve noticed that other people asked you for a cure for diabetes this year for Christmas. As much as I would like a cure for diabetes (this year or next), I’ll leave the curing up to God. Instead, I’m asking you for next year’s Christmas present right now.

It’s kind of technical and doesn’t really exist yet, so I figured I’d better give you and your elves plenty of time to get it together and perfected (and approved by the FDA, of course).

Santa, I’d like the perfect insulin pump/CGMS system. Yup, perfect. At least perfect for me. I have a great system, but there are other systems that have things that I like. So instead of switching systems, I just want you to invent your own.

Here are some of the things that I’d like the new pump/CGMS to include:


1.) Interchangeable CGMS. Santa, I’d like to have the option of which CGMS to use. I know that some CGMS works better for different people. So, I’d like the option to try them all and chose what was best for me…without having to change my pump

2.) I’d like the CGMS to read to my pump (like my current MiniMed system) complete with alarms and warnings, but I’d also like it to read to a second PDM that is also my blood sugar meter. (kind of a mix between the Animas Ping and the PDM for the OmniPod).

3.) I’d like to be able to operate my insulin pump from the aforementioned PDM/meter in the even that I want to wear a dress and don’t have easy access to my insulin pump screen and buttons.

4.) I’d also like the sensor for the CGMS to be FDA approved for 7 days, instead of my current 3 day approval for MiniMed’s CGMS.

5.) I’d like the CGMS to be accurate more often than it is. Instead of a 70% – 75% accuracy, I’d like to see it up around 90%.

6.) I’d like the meter to be as accurate as blood testing in a lab. The “small” differences in readings can mean a big deal in accurate treatment of a low or a high. It would help to have more accurate readings so that my care could be better.

7.) I’d like the alarms on the pump and the PDM/meter to have adjustable volume levels. Sometimes my current system just isn’t loud enough when it’s under 3 blankets and I’m asleep. Having a separate PDM on the night stand might help, but also, having louder alarms would be great because it would wake me up much easier than my currently alarms on my CGMS/pump.


And Santa, I’m going to leave my comment section open so that my other friends in the D-OC can add in their own updates to make the perfect pump/CGMS system. We deserve perfect if for no other reason than we have to work so hard because our bodies aren’t perfect.


Thanks Santa!


Love,
Cara and the rest of the D-OC

I'm still waiting and still wanting. If I can get this, it'd be almost perfect. Almost.

For more posts on today's topic, click HERE.

D Blog Week: One Thing To Improve

Day three of Diabetes Blog Week! Today's topic plays off of yesterday's topic.

Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!



Oh the area I need to work on. There are several, I won't lie. But what I'm currently working on is testing and being more careful about my "guessing" carb amounts and depending on my CGMS instead of actually checking my blood sugars to confirm the results.

I've written about my decision to take a break from my CGMS, in order to force myself to test my blood sugar more often. I'm still on my break. And it's still not easy. But I'm doing it.

The decision was not an easy one to come to, especially since I live alone. I'm already improving. I am testing way more often, because I have to. And I'm not snacking nearly as much. When I do snack, I'm testing and bolusing for everything.

The most annoying thing? Waking up to test in the middle of the night. Still. I HATE it. I like my sleep. I don't like having to set an alarm to wake me up at 2:30.

The good news? I'm planning on starting back on my CGMS later this week. It's for a couple of reasons. One is because I think I'm actually getting back to where I need to be. Another reason is because I'm getting ready to take a trip and I know how my blood sugar gets when I'm traveling. Having CGMS on is an extra safety net, when travel can cause some crazy blood sugar swings.

The true test (pun intended), will be when I get back from my trip. If I can continue to test my blood sugar like I should, and not rely solely on my CGMS. But if I start to slack again, I know that I can trust that my D-OC friends will light a fire under me. And I know that I can always force myself to test, but taking another mini-vacation from CGMS.

As always, see more Diabetes Blog Week posts on this topic by clicking HERE.

D-Blog Week: One Great Thing

Today's topic for Diabetes Blog Week:

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!



One thing I like to think I do fairly well is travel with diabetes. Granted, I don't typically go more than two time zones, so I can't speak if I were to take off around the world, but in general, I'm pretty good at preparing for trips and taking trips that involve diabetes.

I am a super packer. Most of the time I over pack. Everything. Ask my best friend. :) Part of that comes from years of having diabetes and needing to be prepared. As a kid, it was mostly syringes and insulin and test strips. Now that I'm an adult and on an insulin pump and (most of the time) CGMS, packing is even more of an ordeal.

My typical rule of thumb is two to three times my normal pump supplies and test strips. An extra battery, my old insulin pump (in case something happens to the one I have now). Some snack foods, glucose tabs, juice boxes.

When flying, I try to get to the airport the full two hours early. NEXT time, I plan on taking the print-off from MiniMed's website showing that they don't recommend going through the full body scanners (this is after having to argue w/ TSA on my last trip).

But overall, I like to think that I'm pretty good about planning and packing for a trip with diabetes.

To see more awesome posts from today's topic for Diabetes Blog Week, click HERE!

Saturday Snapshots

Awesome Things

Diabetes has brought me so many wonderful things. The most awesome thing is the D-OC, without a doubt. I've met so many wonderful people in person and on the internet. You've given me the chance to express myself. You've shared your stories with me. I've guest blogged. I've had amazing diabetes meet-ups. I've  had the chance to join the Diabetes Advocates.

But diabetes has give me other things as well. Diabetes taught me to take care of my health. It taught me to be responsible from a very young age. It taught me compassion. It taught me the importance of health insurance. Diabetes taught me to share myself with others. Diabetes taught me the importance of juice boxes and to be thankful for a night of uninterrupted sleep. Diabetes has taught me how great it is to find a box of band-aid dots (not the silly mixed boxes). And that when you find juice boxes with 14 grams of carbs, you should buy them all.

Diabetes, in spite of all of the bad parts, had brought some of the most wonderful things into my life. And that makes me thankful.

10 Thing I Hate About You, Diabetes

Along the vein of one of my favorite movies of all times, 10 Things I Hate About You (R.I.P. Heath Ledger), I write today's post. It's not the best sounding in the world, and in truth, it's slightly more than 10 things, but there were slightly more than 10 things in the movie poem as well (count 'em!).

10 Things I Hate About You, Diabetes

I hate the way you sneak up on me and the way you make me bleed.

I hate the way you interrupt my life, I hate it that you’re there.

I hate your stupid highs and lows and the way they mess with my mind.

I hate it when you make me sick, even when it’s a bad time.

I hate the infusion site changes and the needles and the pain.

I hate it when you make me tired, even more so when you make me cry.

I hate it that you’re always in my thoughts and the fact that you always come first.

But mostly I hate that you’ll never be gone. Not even close. Not even a little bit. Not even at all.

. 

Wild Card Day - My First Vlog

I picked a Wild Card topic for today. I decided to vlog. This is my first vlog and was actually recorded a few weeks ago, right after my four year blog-aversary. But I couldn't get it to upload to YouTube, so it's a little late. But Diabetes Blog Week is the perfect opportunity to present my very first vlog.

All I ask is that you turn the volume all the way up (I've not quite figured out sound) and don't laugh at me too much. :)

Letter Writing Day

Dear Younger Self,

You’re young now. Life is carefree, for the most part. High school is scary, but you’ll make it. Don’t let those popular kids make you feel bad about yourself. Most of them will end up pregnant before they make it out of high school. Or they’ll end up on drugs.

Take some chances. Life isn’t nearly as black and white as you sometimes think it is. Remember that there’s a big world outside of your hometown. You’ve not seen it yet. But you will. And you’ll enjoy it. Pick a career path that will lead you away from home, not back home. Home is nice. But there is so much you can do if you’ll just broaden your horizons.

Know that there are others with diabetes out there. You don’t know them yet. But you will. Seek them out. Having someone who understand will make your world a better place and open you up to opportunities that you can not even begin to imagine. Diabetes can be rough sometimes, but don’t ignore it. Test more often. And don’t be so scared of an insulin pump. It will make your life a thousand times easier.

You like to play it safe. I know you well. Just a tip, sometimes safe isn’t always the best path to take. Push yourself. Do things you think you can’t. And don’t ever let diabetes hold you back.

When you’re in college, don’t stop going to the doctor. Test, test, test. Once a month is not often enough. And don’t stop giving yourself all of your insulin. It’s damaging. Sure, you want to be like everyone else (who doesn’t?), but you’re causing your body damage. And since I know you want to live a long and healthy life, you need to remember that a 12.1 A1c isn’t going to get you long and healthy. The sooner you get it under control, the better off you’ll be.

Most of all, remember to find yourself. It’s important to learn who you are while you’re young so you can decide what you want out of life. Your friends are wonderful, but you don’t have to be just like them. You can be yourself. Just like the great big eclectic mess that you are. And that’s just fine.

Signed,

Your Future Self

Admiring Our Differences

Today’s topic for Diabetes Blog Week really starts us off the right way. Admiring our differences. Wow. Diabetes is one word, but there are so many different types and so many bloggers have different relationships to diabetes. I had to think so hard about who I wanted to talk about today. I’ve learned so much from all of you.

But the one that seems to hit closest to home for me are the blogs written by parents that have children living with diabetes. I’ve had diabetes for almost as long as I can remember. I don’t know what it’s like to live without diabetes.

I know how much work and effort I put into my own care each and every day. I know how frustrating it can be when I do everything right and the diabetes gods still don’t smile upon me. Those unexplained highs and lows.

But something I rarely, until the D-OC that is, thought about was my parents and their relationship with diabetes through me. I don’t have children of my own, but I have a mother’s heart. And I can’t begin to imagine one of my own children having diabetes.

The worry that every parent feels naturally has to be compounded a hundred fold. Maybe even a thousand fold. When I read the parent blogs it makes me realize, just a tiny bit what my mom and dad went through with me. The sleepless nights. The hospital trips. How hard they tried to just let me be a kid in spite of diabetes sometimes ruling our lives.
When I was a kid, people would tell me how brave I was to test my blood sugar and give myself shots. Looking back I hope those same people told my parents how brave they were. Because they were more brave than I ever was. If anything, I followed their lead. I was brave because they were brave.

Parent blogs make me thankful that I’m the one with diabetes, and that I’m not the one raising a child with diabetes. Although I’m sure I could do it with grace by mimicking those parents online and my own parents.

To all of the parents out there raising a child with diabetes, thank you. Thank you for doing your best. Thank you for your sleepless nights. Thank you for worrying about us. Thank you for all the stress you endure. Thank you for doing everything you can to make our lives as normal as possible. Thank you for helping us to understand that a number is just a number (it’ll be better next time). And most of all, thank you for loving us.