Guilty Pleasures

Before I was taking care of my diabetes the way I should. Before I had CGMS. Before I was testing 8-12 times a day (yes, there was a time before), I had a few foods that I loved to eat. Foods that I would later discover cause major issues with my blood sugar.

The two biggest ones are pizza and cold cereal. I used to eat cereal a couple of times a DAY when I was in college. And like most college (and high school) students, pizza was a several-times-a-week occurrence. Both are foods I loved.

But when I discovered that I have a horrible time with my blood sugars when I eat cereal or pizza, I began to cut down on them in my diet. With cereal, I have a nearly immediate spike in my blood sugar and it takes HOURS to get myself back in range. Sometimes a whole day! With pizza, I have a nearly immediate low and then around 3 to 4 hours later I spike and it lingers for many more hours.

I won't lie, I don't always say "no" to pizza and cereal. Sometimes, there's nothing like a slice or two of pizza for dinner, with a cold Diet Pepsi and a salad. And more often than not, I break down and buy a box of cereal. Cereal is probably the worst, cause I have a hard time not eating it when it's in my house. With pizza I can throw it out or, if I eat out, just not bring it home with me.


I always know that there are going to be blood sugar issues to deal with afterwards. But, sometimes I just have to have my guilty pleasure foods.

Do you have a food that you know messes with your blood sugar, but you go for it sometimes anyway?

Complicated Diabetes

When you have diabetes, there are times that everything feels more complicated. It's something that I, myself, try to hide from most people. Those living with or caring for people with diabetes know better. They know the truth.

A trip out of town requires more packing.

A job requires more questions (do I get paid time off, or sick days? What's the insurance coverage like? How much does it cost?).

Grocery shopping requires more items (juice boxes when there are no kids in my house? Yup. That'd be me.).

What's for dinner? (That could require a quick change in menu, depending on current blood sugars.)

A budget requires more planning (I have a whole section dedicated to medications and doctor's co-pays).

Going back to school full time? Probably never going to happen, unless I marry someone with fantastic health insurance (any takers??).

Sickness comes knocking? There's more than just waiting for it to be over. There's ketones and doctors and dehydration and things that a "normal" person would never think about.

And though I've not gotten there yet, even having a child requires more planning than a "normal" person would have to deal with.

In a lot of ways I feel like diabetes made me grow up much faster than I might have if I'd never been diagnosed with diabetes. I've always been seen as fairly responsible and in control of things. At times even been considered the "good kid" in my group of friends or my family. In fact, when I ran into my former pre-school teacher a few years ago, she told me that shortly after I was diagnosed (while I was in her class), I was already telling her what I could and couldn't eat. She said I knew, even then, what to do.

There have been many times I've wondered what I would have been like if I'd never been diagnosed with diabetes. It's a foreign concept to me. Would I have been irresponsible? Would I be a totally different person than I am now? Would I have joined the military? Would I have gone back to school already? Would I have picked a profession based on what I liked, and not on it's ability to provide me a stable income and health insurance? Would I already have children?

There are so many unanswered questions. None of which I'll probably ever know the answer, because for whatever reason, I WAS diagnosed with diabetes 26 years ago and I haven't really known life without diabetes.

I can appreciate the things that diabetes has brought into my life. I've met some of my best friends because of diabetes. None of them I would have met if we didn't share a busted pancreas. I've taken trips that I never would have taken, if it weren't for diabetes. I am unsure I would have entered the world of blogging if it weren't for diabetes. And twitter...that's laughable. I'd probably be one of those anti-twitter people, instead of having TWO accounts.

So, diabetes has made my life more complicated. That's a fact. But it's also taught me a lot of lessons about health, life, and friendship, and blessed me in more ways than I can count. Complications (not the health kind!), I can handle. Diabetes, I can deal with.

Happy/Sad

Lately my life has been in upheaval. I've been traveling a LOT since January and I was actually gone as much as I was home in July. It's not work related, and I've enjoyed myself greatly....but sometimes, no matter how hard we try, life and circumstance conspire against us.

Depression and anxiety are things that I've never been formally diagnosed with, but I know I've dealt with at many times in my life. Prayer, good friends and family, and counting my blessings most often help me out and the time passes, usually fairly quickly. In fact, I hadn't had an issue in a couple of years until a little over a month ago.

I recognized the signs of depression in myself after a couple of weeks. I've waited for it to pass and kept myself busy, but it's lingering a little longer than normal this time. It's not to say I don't have good days, or good times. I do. Many of them.

In fact, just this week I went to my endo appointment and found out that despite all my travel and instability, my A1c is back below 7 AND I've lost some weight (not much, but still). But on the flip side, I'm being put on cholesterol medicine again, after being off it for a couple of years.

I thoroughly enjoyed Roche Summit and had such a fabulous time while I was there. Just last weekend, I took a VERY quick day trip to New York that also filled me with happiness and joy.

But, I notice things. I'm more tired than normal. In the quite moments at home the helplessness and hopelessness sneaks in. I want to cry, but I can't find the energy or the time. There are times when I just want to crawl right out of my skin.

I know how blessed I am. I know how much I have to be thankful for. I'm blessed beyond measure. But sometimes it's more than a state of mind. My mind tells me one thing, and my emotions tell me something else.

My first plan to tackle this is to keep on praying. God has gotten me through so many things in my life and I know He won't let me down. Next up, I'm not going to isolate myself. By keeping in touch with my friends (both online and off), I am keeping myself both busy and happier. After that, I don't know. I'm hoping this, like my other experiences, passes quickly. But I do want to thank the D-OC for making me less afraid to seek professional help if I need it. Knowing that others have done it gives me the courage to know I can too, if I need it.

Mostly, I'd like to ask you to keep me in your prayers and to keep me accountable. Tweet me. Facebook me. Don't let me wallow, when I have so much else to be doing.

Roche Social Media Summit 2012

For the first time, I was invited to a blogger/advocate summit. July 29-31, I was in Indianapolis, Indiana, courtesy of Roche, maker of Accu-Chek products, as well as many other diabetes related supplies and devices. I put my disclaimer here: Roche paid for all of my travel expenses, including flight, lodging and meals. That being said, all opinions are my own and anything I say in this post, good or bad, is my own opinion.

For the past four years, Roche has been gathering bloggers, online advocates, and medical professionals with an online presence to have the Roche Social Media Summit. This year, I was one of the lucky ones invited to attend. I feel blessed to have been invited and even more thankful after having experienced the actual event.

There were so many things that happened, that my mind has been nearly overloaded since I got back late Tuesday night. I thought about writing more than one post in order to get all the information in. But I instead chose to do only one post instead. There were so many of us at the event, that I'm sure whatever aspect you are looking for, someone else has probably covered it.

Our trip started out with check-ins and an evening meet and greet. One of my favorite things from the few hours between my arrival and the evening event was the chance I got to go have lunch with Lee Ann Thill, Kelly Kunik and Scott Johnson. I'd met Lee Ann and Kelly previously, but I'd been wanting a face to face meeting with Scott Johnson for a LONG time, as he was the FIRST person to ever comment on this blog. Also, he has a really great Minnesotan accent. :) (Just a note, everyone loved my thick country accent this trip, but I loved listening to Scott talk! I have an accent crush.)

There was also an almost constant group of people in the lobby of the hotel greeting people as they got in from their travels. Meeting many of them for the first time, and seeing some old friends again was great. And I loved that most of it happened in the lobby of the hotel. At the meet and greet there was a great amount of time to talk with each other, as well as with some Roche employees. I loved that time and loved getting to chat with and get to know so many people that I've known online for years.

The first full day of the summit started with a welcome and then a great presentation about the DOC: Yesterday, Today, Tomorrow. I loved that Roche was acknowledging that the DOC exists, has a voice, and is continually growing.

Roche also brought in guest speaker, Josh Bleill from the Indianapolis Colts. I could write and write about all the amazing that was Josh Bleill, but instead I'll say this: Josh Bleill is a double amputee, hurt in Iraq as a Marine, and an extraordinary human being who gives me motivation to continue on with the things that I love and is a great representation of what it means to overcome.To read a much more eloquent version of Josh Bleill's visit with us, check out Chris Stocker's post. He says it all.

We also were able take a trip to the Roche campus to have lunch, a discussion with several Roche "big-wigs" about technology and where Roche is headed, as well as a tour of the Research & Development facility and the Manufacturing Facility. Did you know that Roche is the only diabetes company that makes test strips and meters in the U.S.? I was unaware of this. Also, in only ONE of their plants (the one in Indy), a three-shift day can turn out 15 million test strips. 15 MILLION. That's a lot of test strips.

That being said, while we were having the Q & A with the Roche people and the tour of the campus, I was even more appreciative to have people present who were more technologically inclined than I am. Scott Strumello, Kitty Castellini, Bennette Dunlap, and several others. These people were asking the questions that I wouldn't have thought to ask about technology.

We finished out Monday with a trip to see a minor league baseball game (the Indianapolis Indians) and to be honest, I'm not much of a baseball fan, but there was still fun to be had and I spent the entire game chatting with people and realizing how many amazingly SMART people we have in the DOC. It makes me proud to know that our community is so diverse that we each have our own goals and talents.

And there there was this thing:

Apparently this is Rowdie. I didn't know what he was, other than the team mascot for the Indianapolis Indians. Apparently he's a bear. Who knew? Read about him here. Also, he's kind of creepy. At one point he put my head in his mouth. I haven't managed to chase down the picture yet. If you are reading this & you know who had it, let me know! I want that picture!

Even after the game, as late as it was and as tired as we were, there were several of us who weren't quite ready to call it a day. Several of us got together to chat, have a drink or two, and laugh together. Eventually, though, it had to be done. Sleep had to be on the agenda.

Tuesday morning began a session on the Roche portfolio. It was a detailed look at what Roche is doing now and what they're working toward. Some of the stuff was more about the direction they were hoping to head and we were asked not to discuss it, as they haven't had a chance to finalize things and submit things to the FDA, and that could cause problems later. That being said, there is some exciting stuff that is a possibility for Roche. I look forward to seeing great things from them in the future.

They shared with us their new insulin pumping system, the Accu-Chek Combo system, and actually gave us their newest meter, the Accu-Chek Nano. While I don't see myself changing to the Nano right now (my OneTouch reads to my insulin pump), it is a pretty cool device. The also shared the new Accu-Chek FastClix lancet device, which is a newer version of my beloved Accu-Chek MultiClix.

Some things I found interesting:

-After acquiring the FDA cleared Solo Insulin Pump, Roche has decided not to release it to the public.

-After entering a research & development contract with Dexcom, Roche is going to be distributing the version of Dexcom that will be used by medical professionals in office, NOT the ones that we as patients would have.

-The MultiClix is going to eventually be a thing of the past, as all the Accu-Chek Nanos, as well as all future Accu-Chek Avias will be packaged with a FastClix.

 

A final speaker closed out our time at the Roche Social Media Summit 2012. Steve Richert, from Living Vertical came to speak with us. Steve is a Type 1 diabetic who is in the middle of a project that involves him climbing, in some capacity every day for a year. This project, called Project365 is a pretty amazing thing. If you'd like to help Steve out, go HERE and watch the video, and then "like" it. For every "like" Roche will donate $1 toward Project365.

I loved my time at the Roche Social Media Summit. I was honored to have been asked, and I hope I did everything I could to represent everyone with diabetes to the best of my ability. Thanks to Rob Muller and Todd Siesky, along with all the other amazing Roche employees we met this year, for putting forth the effort to find out what we as consumers want and what we think. It means a lot to know you are listening. Had I not been in the group picked for the Summit this year, I still have faith, like I have every other year, that I am being well represented by members of the DOC. The best thing that I learned at the Roche Social Media Summit was that we are a truly diverse and intelligent group  of people in the DOC.

And thank you to Roche for taking the time to get to know us, the consumers. May you continue to step "out of the box" and make positive strides in diabetes care for those of us that live with diabetes 24/7.

Questions and More Questions

For the past 3 years, Roche medical company has invited, and paid all expenses for, a group of people in the D-OC to come together. This year is the fourth Roche Social Media Summit. Each year has been a group of people that I felt represented the D-OC very well. There are so many of us out there who are doing what we can with what time and resources we have.

Each year has been different, but I won't lie and say that I wasn't a little jealous at those who got to go, while I didn't. But I didn't hold it against the people who were there. Everyone can't possibly go. And the best way to get information to people and out to the community is to use the people who get the most notice online.

This year, I have been invited to be a part of the Roche Summit. While I am still a little surprised at being invited (I feel there are many deserving people out there), I am very happy to be involved this year. Just a few weeks ago, I wrote a post about responsibility.

I feel like I have a responsibility in going to Roche as well. I want to know what kinds of questions you have for the people at Roche and what kinds of things that you want them to know from you.

From what I understand, we'll all be live tweeting stuff during the conference, but also please feel free to leave me comments on this post. I'll do my best to get all the questions answered if I possibly can.

I do promise you this: I will not take this for granted. I will do my best to represent YOU.

Any Time Is a Good Time

Anytime is a good time for a d meet-up. I LOVE getting to meet my D-OC friends in real life. It's so great because there is a person you already know you love and have a lot in common with and there's none of the awkward stuff that usually comes with meeting a person for the first time.



Pumping at the Full House park...apparently
also known as Alamo Square. Who knew??

Sarah and I "met" through twitter and facebook and her blog (though I found her twitter and fb first). Something that I discovered quite quickly was that we both share a love of theatre, along with a busted pancreas.

Sarah & I at Lombard street. Let's just say there were juice
boxes consumed after walking up and down that hill.

When my love of theatre led me across the country to San Francisco, I knew Sarah and I had to meet up. :) Sarah was, of course, completely wonderful. She took me and my best friend around to sight see for a while, we went out to a great place for lunch, and then she joined us in our personal brand of crazy, which consisted of sitting on the sidewalk for 5 hours waiting on cheap front row tickets to see my favorite show in the world.

Sarah's great suggestion for sea food! So yummy.

The best part? She didn't complain about the waiting. And I'm pretty sure she enjoyed the show. :) And the whole while, we both had low treatments, we both beeped randomly, tested, calculated carbs, and my best friend had lots of fun checking to be sure we were okay. :D

The show that led me to San Francisco and gave
me the chance to meet Sarah!

All of you who were blessed to be at Friends for Life this year, I'm still a little jealous. But I wouldn't have traded getting to meet Sarah for anything.

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'.

Stingers and Creepers

I very rarely get a bad infusion site. I'm pretty lucky like that. I don't know why. I do often get what I call "stingers." To me a stinger is a site that stings like CRAZY when you insert it. Sometimes the stinging can last for a while. Sometimes a bolus can hurt when there's a stinger.

With me, a stinger usually goes away by the first day, so I try to stick it out. A little over a week ago, I got blessed with a stinger. I stuck it out and by the end of the first day, it wasn't hurting anymore.
Day two was okay. No pain and no real fluctuations in blood sugars, so you think everything is fine.

I ate a late dinner on night two, so I expected my blood sugar to rise in the night. It always happens to me if I eat after 8 p.m. Probably because I should have a different insulin to carb ratio at that time, but I refuse to change it because I live alone and I feel lows in the night WAY more than I fear highs in the night.

My CGMS went off several times in the night. I gave insulin every time. And I woke up over 200. It was a busy morning for me as I was having a yard sale that day, so I tested, bolused correctly and got busy. Within a few hours I realized I wasn't feeling the best in the world and tested again and was nearly 400.

Since I was due to change my site sometime that day, I thought I'd probably better go ahead and do it, even though I was busy. Cause I knew that with blood sugar levels that high I was probably going to need a new site just to take the massive amounts of insulin.

I didn't have any clue that I had a bad site until I pulled it out. And under the sticky on my infusion site was a knot under my skin. It was small, but it was a knot and it HURT. High blood sugar culprit found.

Was it a result of my stinger site? Who knows. That knot was there for about 3 days after I removed the infusion site. I don't truly know what caused it, and if I ripped out every single stinger I had, I'd be taking them out more often than I'd like to admit. Could it have been a fluke? Did I bump my infusion site and don't remember? Did I have a "bungee pump" that yanked ad caused it? Was it something that I could have stopped?

Probably not. There was no physical pain after that initial pain the first day. Apparently this bad site was a "creeper." You know the kind. The ones that give virtually no symptoms.


Such is life.

Guest Post - Diabetes is No Picnic

Yet again, I've come up on a major writer's block. And yet again my friend Sherry has sent over a guest post. Sherry, you are not only one of the sweetest, most sincere people I know, you're also a lifesaver when it comes to my blog. :)

Sherry's other posts can be found on the Your Voice page. Want to submit a post as well? Click HERE for instructions.

It was like any other summer day in the park. Except it was hot! We questioned our sanity at coming out on a day like that but we were already sweaty, so why not just stay a while?

There were 7 of us. Young, healthy looking, active---amid the blankets and picnic lunches and toys that one would play with in a park. We don't know each other well, or hang out together; all we have in common is this group--yet we share the deepest of bonds.

After some general tomfoolery and gadding about, we all sat down to eat together. Nothing unusual about 7 friends sitting about on blankets, opening lunches and gabbing about life in general. We looked just like the rest of the folks in the park that day. Except for one thing.

As lunch began, we all pulled out blood sugar meters, test strips, insulin pumps and syringes. Several minutes of poking, testing, bolusing, counting carbs, injecting, etc. followed. After all the medical hoopla, lunch went on as normal for anyone else. We even went through the list of new restaurants in town, deciding together which ones were the best!

This was one of those 'wow' moments that sneak up and shock me so much. You see, all 7 of us had juvenile diabetes. Four of us were diagnosed as children, two as adults and our 23 year old newcomer was only diagnosed a few months ago. This was our monthly get together--a tradition for the last couple of years since we found each other on the internet and discovered that we lived close enough for some face to face fellowship. Our leader and founder had lived with the disease since childhood was lonesome for the support and fellowship she had had as a child with diabetes. Since she had grown up, there wasn't the fellowship anymore. Adults with type 1? That sounds like a paradox. It was..... only several decades ago. Type 1 diabetes was rapidly fatal in our grandmother's day and age, but it isn't anymore!

Anyhow, since it was way too hot to play, we spent our meeting lying about on blankets and chatting. JDRF has a new publication for adults with type 1 which discusses situations unique to us. We shared with each other how diabetes affected our relationships with friends, our jobs, our marriages and our general lives. We spent time ranting about how type 1 is totally butchered by the media, making our lives much more difficult. We shared about how dating is affected- how one girl had had a date read her medic alert bracelet right on her arm on the first date!- and how the guy never came back again. We praised our boyfriends, husbands, mothers and fathers for sticking with us through all the highs and lows and juice stained clothing. Some of us wondered if we would ever be able to have children, or fly an airplane, or make it through grad school alive. One of us worried out loud about getting a severe cut on her leg and not even feeling it when it happened. Another of us was frustrated at the huge medical bill acquired for dehydration due to an innocent little stomach bug. One of our youngest members had just been diagnosed with bleeding in the eye. We wondered about our bodies being ravaged in places we couldn't even see. We talked about losing our eyesight, amputating our limbs and worried that we would someday very soon not be able to get the insulin we need to survive because of the new healthcare reforms. Would the politicians decide we weren't worth the cost of the supplies we need to live? We talked about the fact that none of us would survive this disease.....that in one way or another, this disease would be the major cause of our death. There we were, 7 people not even middle aged, sitting in the park on a sunny Sunday afternoon, having a conversation like that.

As the conversation died down, one by one we fell silent. Unusual for this chattery group. We just looked at each other, out of things to say. We all looked up when we became aware of childish sounding music wafting on the breeze from an ice cream truck. How ironic, I thought. After the conversation we had just had, why should we have to listen to an ice cream truck? None of us could even eat the stupid stuff without major hassles.

We decided that, although diabetes is no picnic in the park, we were just going to lift our heads high and live life to the fullest. We weren't going to miss a single thing we wanted to do!! We weren't going to let this disease steal our lives. We were going to live out the motto of our leader: helping others to live to their healthiest potential. So bring on the ice cream truck....we can handle it! We may even eat some of it! Ha

The Friendly Side of Flying

As you may know, flying with diabetes can be a flat out pain in the rear. Not only do you have to deal with the "normal" part of flying (3 oz containers, no shoes, carry-on size luggage, etc), when you throw diabetes into the mix you run into rules and regulations and technology issues many times.

I treat my lows with juice boxes most of the time. Since even a small juice box is over the 3 ounce size limit for flying, it can be an issue at security. Most of the time I only have to mention that I am a Type 1 diabetic, but I have had them argue with me before. So I've started taking the print off from the TSA website that states that I can take juice, just in case.

Also, Nashville airport (which I nearly always fly out of) has nothing but full-body scanners anymore. For most people, this isn't an issue. For me, it requires extra steps. According to my insulin pump and CGMS manufacturer, full-body scanners are a no-no. This means requesting a full pat down of myself and a swabbing of my hands and insulin pump for explosives. I travel enough that I'm used to it by now, but I also have had times when I've had to argue with TSA agents in order to get the pat down. Due to that, I now have a print-off from the website of my insulin pump company that states that I cannot go through the full-body scanners. You know, just in case.

A couple of weeks ago, I took a trip out of town and packed up my diabetes supplies, my print outs, and explained to my travel companion that two hours early to the airport was pretty important to me, due to the issues that I often face when dealing with airport security and TSA.

We were running late that day (completely my fault, not hers) and pushing time close for our flight. I tried to place myself in the shortest possible line, knowing that I was going to have to wait on a female TSA agent to do the pat down. I was blessed. I asked to opt out due to medical equipment and the guy never even batted an eye. He directed me to the metal detector and almost immediately there was a female TSA agent waiting to get my items (they won't let you touch them until after they're done with the pat down) and direct me to the glass box.

I started to explain about my medical equipment to the agent and she basically reached down and showed me her insulin pump....exactly like mine. Turns out she was wearing the same pump and CGMS that I was. We chatted while she did the pat down and talked about things like infusion sites and CGMS sites and meeting people with diabetes. It was quick, nice, and I LOVED not having to explain myself to the TSA agent.

I handed her a card with my blog address on it, so she may in fact be reading this post. If so, THANK YOU! You were wonderful and helped make that particular experience with TSA and airport security much friendlier.

That was the friendly side of flying. I can only hope I'm lucky enough to get her again when I fly (which I'll be doing a lot of in the next couple of months). Either way, it was a fun experience.

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!

D-Blog Week: Find A Friend

Time for the first post of this year's Diabetes Blog Week, the brain-child of my good friend (and pseudo twin!) Karen, who blogs at Bitter-Sweet Diabetes. If you haven't signed up yet, there's still time! Check it out HERE.

Today's topic:

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!! Let’s all find a new friend today!


When I started blogging a little over five years ago, I kept up with so many different blogs. Mostly because our community was smaller then. There were less of us and less blogs to read. In the past couple of years the diabetes online community has exploded with new bloggers. People living with Type 1, Type 2, LADA, people who care for people living with diabetes. There are so many I can't even begin to put a number on how many there are.

In the process of this, I've slacked on my blog reading. I still read sometimes, but I stick to a core few most of the time because I think I might go crazy if I tired to read and find everyone.

That being said, a lot of my D-OC interaction has gone off line. I've met some amazing people because of the online community, and in that I met a lovely person that always manages to make me laugh.
While we've only met in person one time, I look forward to getting to meet with her more often in the future.

Tricia and I met at Simonpalooza back in October of 2011. I am sad to say we didn't get much of a chance to chat while I was there because there were so many people there and so much going on. But, with twitter and facebook, we've gotten to know each other better. And while I'm horrible about leaving comments on her posts, I love to read her blog.

In true pumping style, Tricia's blog is entitled Battery Operated Pancreas. She's one that I suggest you check out (if you haven't already). And if you get the chance to meet with her in real-life, DO IT! :) You'll be blessed.

To see more great Diabetes Blog Week posts on this topic, click HERE.

The Break...How's It Going?

So, as some of you know, I'm still on my break from my CGMS. It's been weird. Good. Bad. Crazy. I have been testing my blood sugar more often. Not as often as I was pre-CGMS, but more. And I'm working on testing even more. Thank goodness for pump alarms that I can set to remind me.

The most annoying thing that I've been doing is getting up to do a 2:30 am test. I'll admit, I don't do it every night. But I have been doing it most nights. Last night my phone alarm went off. I turned it off and went back to sleep. Maybe I should put it across the room?? LOL

My mom, who doesn't really know what's going on, has actually been calling me most mornings. Which is funny. Before I went on CGMS someone (either my mom or a friend) called me almost every morning.

CGMS is a blessing. But when you take it for granted, you end up having to pay for it. I'm working on getting myself back to a place where I can gladly put my CGMS back on and use it in the way it was intended to be used.

I look forward to it.

Technology is a great thing. Technology saves lives, both in the short and long term. But it has to be used wisely and correctly. I'm forcing myself to do this. For me. For my health. For my peace of mind.
How long will my self-imposed hiatus be? I'm still not sure. I'm at a week. We'll see how it goes from here. Two weeks? Three? A month?

I'll keep you updated. And please continue to keep me in your thoughts.

The Plan to Fix the Problem

So the past 6 to 8 months have been somewhat of a struggle for me. I've been laying down on the job, so to speak. Diabetes burnout takes many forms, but for me it's been nagging and ongoing in a way that I'm done dealing with.

As most of you know, my blogging has taken a back seat to other things in my life. My time on twitter (at least my "diabetes" account) has been less and less. This is an outward sign of what's been going on my in my head for a while.

I don't really feel like dealing with diabetes. I do it. I wear my cgms and my insulin pump. I count carbs (most of the time). I test. I keep juice w/ me in case of a low. I don't mess around. HOWEVER, I've been paying less and less attention to the little things. It's like I went from micro managing to just....managing.

Sure, you can survive on managing. You can stay out of the hospital. Stay relatively healthy. But is it good enough? Not for me. And it's time to stop.

My kicker happened this week. I had an appointment at my diabetes clinic with my nurse practitioner. They did my a1c again. And for the second time in 12 months, my a1c was over 7. I don't like to compare numbers. I don't like to make people feel bad (or feel bad myself). But for me, 7 is my stop point. Since I started pumping insulin 6 years ago I've had only 3 a1c results that were 7 or above. Like I said, this isn't to make anyone feel bad, but this is MY standard (remember that your diabetes may vary).

After having a very successful meeting with my nurse practitioner, we made a plan. My biggest problem of late has been depending too much (sometimes always) on my cgms, instead of confirming with blood sugar checks. Another large problem is snacking or eating and bolusing (or SWAGing) on what was on my cgms, instead of testing.

Solution: a temporary hiatus from cgms. Mostly to force myself to test my blood sugar more. Yesterday was my first day without cgms. I usually have a day here and there that I go without. Today though was my bigger test (no pun intended). Day two without cgms.

Since I'm more out of practice with regular testing of my blood sugar (not just before meals), I've set several alarms on my insulin pump to remind me to test. It's helped me. Last night, I set my phone to alarm me around 2:30 am so I could do a middle of the night test. Tonight, I'll do it again.

I live alone and I FULLY believe that cgms can save lives, including my own. But much like it can save my life, I also believe that it can be a downfall, if used incorrectly. And that's what I've chosen to go off of my cgms for a little while. At this point, I'm only thinking a few weeks. Maybe around two or three weeks.

At that point, perhaps I'll find myself less reliant on my cgms for major information, and more used to having it used for the reason it was intended: to show me trends and warn me before lows and highs so that I can test and treat accordingly.

So, I ask for your help. Send prayers for me, since living alone with diabetes can be scary at times, and even more scary without cgms. And send me strength to put myself back where I need to be so that I can go back on my cgms AND get my a1c back in the range that I feel most comfortable in.

My favorite part about my appointment at my diabetes clinic, however, was a quote on the wall in the nurse's office. A quote that I believe all of us should live by and that I've taken to heart when dealing with this time in my diabetes life:

Never discourage anyone...who continually makes progress, no matter how slow. - Plato

I think we should all live by this quote, as well as all of our health care providers. The fact that this was on the wall of my diabetes clinic lets me know that they are NEVER going to berate me for my current status in my health, but will only encourage me to work harder.