Thursday, December 8, 2011

Wego Health Activists

Something's afoot in the online community. Too often I think we don't get enough recognition for the things that we do, both online and off. Wego Health is hosting the Wego Health Activists Awards 2011.

YOU can help out by nominating people in your community who are making a difference as a health activist. This is not just relegated to people that have or care for people who have diabetes. It covers all health conditions.

The categories listed are:

Rookie of the Year

Best in Show

Paperboy Award

Health Activist Hero

Advocating for Another (best parent or caregiver)

TMI Award

Hilarious Health Activist

Offline Crusader

Best Affirmation Post

Best Kept Secret

Want to nominate? Come on, you know you do! Click below!

Wednesday, December 7, 2011

Christmas Came Early

Back around Labor Day my transmitter for my MM cgms cracked after almost 4 years of use. I knew I would have to get a new one, but to satisfy my burning curiosity, I trialed the Dexcom first. Then I called MiniMed only to have them tell me that my insurance company wasn't going to pay for a new one. They didn't "cover it." Um. Okay. They did in the beginning. And had been paying for my sensors ever since.

They also cover the sensors for a co-worker's husband. Why now?

The lady I dealt with at MiniMed was amazing (and probably got sick of my incessant calling). She said they wanted a pre-approval first. That can take up to 30 days. I had borrowed a transmitter from a friend who had an extra (not sure how that happened) and was using my own sensor, but I was running out and my insurance wasn't paying for the transmitter/system OR the sensors.

I got blessed by T1 friends locally and by a friend in the D-OC who sent me some sensors in hopes it would get me through until insurance came through with a decision.

Friday I got a letter from my insurance saying they had deemed it "medically necessary" but that it still might not be paid. But from everything in the letter, it looked like I met the requirements. I called MiniMed and on Monday they told me they'd talked to my insurance company and that my insurance had no record of approval. The last thing the insurance had in their computer was dated November 22.
The letter from my insurance company was dated November 23rd. Sounds typical, right???

Anyway, MiniMed let me fax the letter, they looked it over and I literally had my new cgms system AND sensors the next day!!!

It was like Christmas came early for me!

Monday, November 21, 2011

Hey Pancreas!

Well, I've been majorly slacking in the past week or so on blogging. It's sad that it is Diabetes Awareness Month and I'm slacking, but my only excuse is that I've been sick for about a week. I was out of work on World Diabetes Day and had to make a lovely visit to the doctor to get some meds. I even lost my voice that day! Crazy.

I'm only now getting back to myself. As a peace offering to my lovely readers, I offer you this amazingly hilarious video. My best friend shared it with me and I laughed so much! I posted it on my Facebook page last night and I know it's already making the rounds in the D-OC, but for those of you who've missed it so far, I wanted to give you another chance to see it.

Don't laugh to hard. And try not to get the song stuck in your head. :)

Wednesday, November 9, 2011

Diabetes Awareness - Myth #2

Diabetes isn't Deadly

As usual, I'm behind on my blogging. I tend to take things going on in our community and think about them, read what others are saying and then think some more before I write. One of the biggest myths that I know of about diabetes is that diabetes isn't deadly. If you ask your average person on the street, they'd tell you that as long as you take your medicine and eat well you'll be fine (that's if they don't just tell you to lose weight and quit eating sugar).

The truth of living with Type 1 diabetes is that without insulin I will die. Anyone living with T1 will die if they do not take insulin. But did you know that even though you take insulin, you can still die as a direct result of diabetes? I'm not talking about long term complications that end up in eventual death. I'm talking about at any moment, at any time.

I wrote a little bit about it when there was a young girl who died in her sleep from undetected low blood sugars. It has become one of my most popular posts ever, but the truth of it is in the post. Basically, no matter how much we do right, sometimes it's not enough. The insulin we take to stay alive can also take our lives.

If it were as easy as a set amount, or a set insulin to carb rations I think none of us would worry. But so many other things factor in. Stress, exercise, lack of exercise, change in routine, illness, hormones, and even changes in weather/seasons can all have an effect on blood sugar. And most of the time these variables are unpredictable at best. Then add in "hidden" carbs, the effect of fat on digestion, the occasional "bad" batch of insulin....well, you might be starting to get the picture.

Diabetes is with me every minute of every hour of every day. It's with me always. And in that, I don't get the chance to say "time out" when things in my life are getting crazy. I live by myself. This is something that most 30 year old women would think nothing about. I can take care of myself....right?
But the truth is that with tight blood sugar control (i.e. as close to non-diabetes levels as possible), you deal with more low blood sugar levels.

So the fact remains that I could die in my sleep. It is possible. It's a scary thought. I don't fear being dead. My faith in Jesus tells me that being dead isn't the end. But the thought of dying does scare me. I don't want to leave before I've finished whatever I'm supposed to do in my life. I have goals to accomplish and things to do that make the thought of diabetes stopping that a terrifying thing.

This past week JDRF took out an ad in The New York Times calling the FDA to action in regards to approving something called a Low Glucose Suspend function on insulin pumps. An insulin pump is kind of like an IV. Even if my blood sugar is low, it continues to give insulin (which in turn, continues to lower the blood sugar levels). With a low glucose suspend, the insulin pump would automatically (without my help) turn itself off. This could save lives, but the FDA has yet to approve it, even though it is now widely available in Europe. Below is the ad:

1 in 20 people. There has been argument over how accurate that number is. But all I have to say is this: Piper could die in her sleep from a low blood sugar. She's a child. So could I. I'm an adult. Any person who takes insulin for their diabetes, regardless of age, race, gender, religion....any of us could die. The fact that there is a possibility of death (regardless of the statistics) is too much. I DO NOT WANT TO DIE IN MY SLEEP. Not from a disease that I work so hard to live successfully with. Not a disease that's been with me longer than I can remember.

The fact that there is a child in that ad draws attention. I understand why JDRF uses children. It's a great marketing tool. It's extremely effective in touching people's hearts. The thought that a child could die NEEDLESSLY will bring action about. However when I look at that JDRF ad, I see this:

And the faces of all of friends who are daily living with diabetes. The myth is that diabetes isn't deadly. The truth is that DIABETES KILLS.

Tuesday, November 8, 2011

Burnout - Mara's Story

A couple of years ago I was blessed to meet Mara on one of my many trips to New York. Even though she's not a blogger, Mara and I have become facebook friends and have stayed in touch. I love that she has agreed to write something for my "Your Voice" project and I really feel like it fits perfectly into Diabetes Awareness Month. I would venture to say that anyone living with diabetes has suffered what we call "burnout" at least once (most of us many more times than that).

This is a big reminder to people that living with diabetes is a full-time job and that it can often times be overwhelming (even when you've lived with diabetes for many years). Here is Mara's story and I'd like to thank her for her gracious submission!

When Cara mentioned that she was seeking “non D-bloggers” to fill in some spots while she took a hiatus due to diabetes burnout, I jumped at the chance. Anyone who knows me via Facebook (either in “real life” or just through the DOC) knows that I am not shy about posting about diabetes. Usually referred to by me as “Big D,” diabetes becomes the focus of many of my posts, which are often vents or questions/requests for feedback from other “D-peeps.” (I put these things in quotation marks because I’m not really sure if other people use these D-nicknames (sorry, “D-nicknames”) or if these are just pet names I have for it in my head!)

So, when Cara told me to go for it, write a guest post, I was trying to think of what I’d write about. This was almost a month and a half ago, a few days before my 20-year Diaversary (Oh come on, I know we all use that one!). I was thinking I’d write about all the things I’ve accomplished in 20 years in spite of the fact that I have diabetes, and because I have diabetes. I was thinking about referencing how I feel that having diabetes as a kid, I’d been forced into independence and self-sufficiency at a young age, and how that just transferred to other areas of my life. I thought of mentioning how through the DOC and in-person events, I’ve met so many other people living with Type I Diabetes for many years like I have, and how wonderful they have been as support, even if I’ve never met them and just read their blog posts and go “Yeah, ok- whew- somebody gets it!” I also thought of writing about how proud I feel that I went through 4 years of college without even knowing that a pump existed, and these days I work a crazy schedule and manage to manage everything, no matter how many other deadlines I have.

You feel a “but” coming, dontcha. I feel it, too. I felt it just at the point when I had all these ideas in my head for my guest post on this blog. That “but” came in the form of one of the most erratic and stressful times of roller-coaster fluctuations I can remember in a long time. I’m still struggling with it, have an endo appointment in a couple weeks, and I know, like all the times like in the past, it will work itself out. But, I felt the irony of not being able to write a guest post to help Cara out in her time of “D-burnout” because I myself was now feeling it. The truth is, I AM proud of my independence, what I’ve accomplished, how incredibly healthy I am despite having a crazy disease like diabetes.

But, I hate it. I hate when I feel one way when I’m low and another when I’m high and when my body is just tired- TIRED- from days and days of ping-ponging between these too. I hate that I work long, crazy hours at my full-time job and have diabetes as my second, unpaid job (one that I did not volunteer for). I hate that I do everything right and sometimes it still goes all wrong. I hate when I eat an entire meal and stuff myself and then realize I’ve miscalculated and have to eat half the kitchen to fix it (which will of course require a correction 3 hours later…). I hate that I bring tons of supplies along when I won’t be home for many days and my high sugar makes me eat through them and send me into panic. I hate that I’m more than ever in need of a CGM but my insurance company disagrees and considers this crucial piece of diabetes management a luxury (um, are there any luxuries you know of in diabetes?!) And I hate that I can’t help out other D-peeps who are in need of comfort and advice because I’m so burnt out myself.

So, why am I writing now? I thought I couldn’t write about diabetes when I was burnt out. I had emailed Cara to say that I didn’t think I could do it at the time because of my burnout. And then I realized that sharing this with the diabetes community would relieve my stress and maybe some of yours. And you know what? It worked. I feel like I’m writing to a journal, and it feels good to get my frustrations out in writing (and I even saw that others blogged about the burnout, too). But, it feels even better to share my frustrations (and successes…) with people who I know at one time or another have felt the same thing. And, um, yeah – we should all be incredibly proud of ourselves. We’ll see what the next 20 years bring.

Monday, November 7, 2011

Diabetes Awareness through Performing Arts

Earlier this year I was blessed to see a wonderful musical that helps educate about diabetes. This musical, called Andy & the Beats, was written, directed, and starred a man living with Type 1 diabetes as part of his senior thesis/project for college. It was my luck that said college is only a couple of hours from me, so I made the trip and was very glad that I got to be a part of that.
I wrote about seeing the show and even at the time I saw it I thought, "someone needs to do something with this musical." It could be such an educational tool and has so many things about it that would be great, especially for families with children who have been recently diagnosed with diabetes.

After the short run, I hoped that there might be some more attention brought to the show....
Now that's happened. Andy & the Beats is in contention for the Pepsi Refresh Everything grant program. They are trying to get a $10,000 grant to help do another staging of this show. And with each staging and chance for this show to be performed, more and more people will be educated about diabetes.

You can help Andy & the Beats get this grant by voting HERE. You can vote once per day. They are, at the time I am writing this, in 48th place. They need to be in the top 15 in order to receive funding. You can either vote by using your facebook account, or you can create a free Pepsi account and vote that way. All the information is on the page for Pepsi Refresh Grant. Each person gets 5 votes per day, but only 1 can be counted per entry, so go in every day and vote for Andy & the Beats.

We are a very large and very strong community of people living with diabetes online. I KNOW if we can get Disney to pull a certain episode of a television show, we can help Andy win this grant.
Please pass this information along and follow Andy & the Beats on facebook.

Friday, November 4, 2011

Blue Fridays

For Diabetes Awareness Month, I will be wearing blue every Friday in November. This entire month of November is about raising awareness about diabetes and helping to break stereo-types about diabetes. As an advocate for diabetes I blog. I talk. I learn. And this month, I wear blue.

Thursday, November 3, 2011

The Invisible Man (Woman)

Here's another "Your Voice" post from my good friend Sherry. She is such a blessing and has a beautiful way with words. I've been holding onto this post for a while, but I thought that it was perfect for Diabetes Awareness Month considering the insight it gives into having a low while in public. For each person it can be different, but I've had the same scary feelings that Sherry speaks about in her post.

For now Sherry doesn't blog. Instead, I let her post here whenever she feels like she has something to day. However, I think I'll eventually turn her to the "dark side" just might take a little while. ;) You can find Sherry on facebook.

I sometimes wonder if I am made of plastic. Not visible to the human eye. Sometimes this is frustrating.

Here’s the scene….I’m in the local mall, scurrying around preparing for our upcoming wedding. (our 25th anniversary wedding…happening in a mere two weeks, but that is another story.) The ring bearers need matching shirts. My husband needs a pink necktie and my son needs a yellow one, but I won’t know what shade of yellow until I see the dress the bridesmaid has. I call her on my cell phone, but she doesn’t answer. Ties are in abundance in these big stores, but try looking for a certain color and you have a challenge that is daunting! But I digress….

I’m bustling about the department store, pushing my youngest son in his wheelchair. He and his chair together weigh more than I do…plus we have the usual profusion of diaper bags, purses, feeding supplies, packages, etc. hanging off the back of the chair.

Giving up temporarily on finding the right colors of ties, I meander over to the little boys section. I’m delighted to find matching shirts, snatch them up and pray they will fit, and proceed to the checkout. There are several people ahead of me, and the computers are acting up, providing quite a tizzy among the workers. All of a sudden, I realize I feel low. Odd, since it’s only 11:30 a.m. I brush off the feeling and continue waiting. A few minutes later, I realize I probably should see what is going on in the blood sugar department. I slink off behind a rack of clothes since I don’t want to do the finger poking and bleeding routine in front of the innocent children wandering around. After all, this is the children’s clothing department. My meter confirms a saucy little 55, but I feel about 25. Glucose tablets come out amid the curious stares of the children, wondering why this lady is sitting on the floor eating candy. No one above age 12 notices the lady sitting on the floor.

After getting up and paying for the shirts, I make my way to the food court on the opposite end of the mall. The road looks terribly long to me. I finally can’t push or walk anymore so I sit down. My little 9 year old son, in his wheelchair, sits beside me. He is only about 10 months old mentally, but he reaches out his one usable limb, his right arm, and tries to touch me. I pull his chair closer and lay my head on his chest. He proceeds to hold me tight and rub my back. It feels wonderful to be touched. I don’t know how long we sat this way, but when I opened my eyes, I realized there is an ice cream stand right in front of me. Two middle aged ladies are working there, chatting and staring at me. They say not a word to me.

I finally feel like I can walk so I proceed to the food court and try to purchase some food. This requires more thought patterns than I currently have in my brain, and I discover that I left my change purse back in the children’s department. Fortunately I have some money in my purse and purchase food, but by now I can’t remember how to eat it.

As I sit there amid dozens of people, I lay my head on the table beside the food. I know the food will help me, but only if it enters my body. I can’t seem to remember how to put it in my mouth. Once again, I figure I must be made of plastic. No one sees me. No one thinks it’s odd that a lady is lying on the table, not eating the food in front of her. I remember feeling very lost… a little child in a crowd with no one to guide me. I feel vulnerable and sad. I wonder why no one cares.

Relating this story to my husband later that evening, he says that he thinks people are afraid to get involved. Afraid to help someone in need because of a lawsuit. I tell him, “How can someone get a lawsuit for giving a person food?” He says people just don’t know, they don’t understand Type 1. Right.

Guess I’ll just continue to be plastic. Invisible. Or maybe ladies lying in the floor at the mall eating candy are commonplace. I’ll have to look next time I’m there shopping. Maybe I just missed them because I was low.

Wednesday, November 2, 2011

Diabetes Awareness - Myth #1

People with Diabetes Can't Eat Sugar

I have had diabetes since 1986. I was 4 years old. Things were so different at that time when it came to diabetes care. I believe that this time period (and the many years before it) were the reason that many people believe that people with diabetes can't have food or drink that contain refined sugar. At that time, the understanding of how foods effect blood sugar were very different than what they are now.

Here's where the myth busting comes in:


Yup. You read that right. I have Type 1 diabetes. I take insulin to stay alive. And I CAN have sugar.
A healthy person eats all types of food. The foods that cause blood sugar to rise are foods that contain carbohydrates. There are other things that can cause blood sugar to rise, but I'm only addressing on myth at a time.
If you look on a food label, there are things broken down. Fat, Calories, Sodium, Carbohydrates. At a very basic level, foods that have carbohydrates are things like grains, fruits, and sugars. When a healthy person eats something with carbohydrates, their body produces insulin to turn the carbohydrates into energy for the body.
A person with diabetes either doesn't produce insulin, or the insulin is not used properly by the body. Because of this, people with diabetes have to take insulin (for those living with Type 1 or Type 2) or pills (for those living with Type 2) to help their body turn the carbohydrates into energy.
It is true that a person living with diabetes may chose to refrain from some types of carbohydrates in order to control their blood sugar levels easier, but overall, a person with diabetes can eat any type of carbohydrate as long as there is insulin (or other medication) to cover the body's need to turn the carb into energy.
A fact that many people that do not live with, or care for someone who lives with diabetes is that a regular sized snickers bar has 35 grams of carbs. There is right around that same amount of carbohydrates in two slices of regular loaf bread. Obviously, for anyone with or without diabetes, the bread is probably a healthier choice. But the fact remains, that I would give the same amount of insulin for either of these items.
I won't get into all the boring details, but some carbohydrates do digest and effect the blood sugar differently. And it's different for every person. I typically avoid pizza and cereal because I have a harder time covering these types of carbs with insulin. I have a friend who chooses to avoid pasta. I try to cut down on my rice intake.
Each person living with diabetes should eat in a healthy should the person who does not have diabetes. Sure, you shouldn't eat sweets all the time. No matter who you are. But don't look at a person living with diabetes and tell them that they shouldn't eat that cupcake. If treating yourself to a cupcake every once in a while is okay, let the person living with diabetes decide if it is a good time for them to treat themselves.
We'll make a deal with you: You don't tell us what to eat, and we won't tell you what to eat.
And now you know the truth: People living with diabetes CAN eat sweets!

Tuesday, November 1, 2011

Diabetes Awareness Month

Today marks the first day of Diabetes Awareness Month. This month there are activities going on all over the world to bring awareness to diabetes and the need for a cure. This month I am going to be posting quite often. Many of the posts are going to be (hopefully) dispelling common myths about diabetes. Other times I will be posting something about my life and living with diabetes. And other times, I will be putting up posts to go along with my "Your Voice" project.

If you have a myth you'd like me to cover, please comment or email me and I'll see what I can do. If you'd like to submit a post for the "Your Voice" project, please click at the top of the screen or HERE to get information about who can submit, how to submit before you email me your post.
Please remember that people live with diabetes every single day. It's a disease that doesn't go away. There is NO CURE for diabetes. Until God grants me my healing, or science discovers a cure, I will continue to live my life with diabetes Every Day, Every Hour, Every Minute.

Friday, October 21, 2011

Vloggy Simonpalooza

My vloggy tribute to Simonpalooza.

Caroline's vlog that inspired me can be found HERE.

Video of the D-OC meeting Simon at the airport in Kansas City

Video of Simon thanking Cherise

Tuesday, October 18, 2011

Dexcom Decision

I feel guilty for not getting this post up sooner. I've been busy, crazy, stressed, and uninspired. However over due it is, here's my post about the decision I made regarding the Dexcom trial.
Over the week that I trialed Dex, I was fairly happy with the results. They were pretty much dead on with what was going on (including matching, almost always, my MiniMed CGMS). There were some areas that I felt that Dex did have some amazing things going for it.

First off, it catches a turn around in blood sugars more quickly than the MiniMed counterpart. Secondly, they are FDA approved for 7 days. Much more than the 3 days that the MiniMed is. Also, the Dex does not have to be taped down 10 thousand ways to keep it on (I use two pieces of medical tape and two IV-3000 tape pieces to hold down my MiniMed).

Another thing I loved about the Dexcom was that I could put the receiver on my night stand next to my head and it I ALWAYS heard it alarm (it vibrates before beeping, and let me tell you, on a wooden nightstand it will wake me up). As I've talked about previously, I don't always here my MiniMed alarms at night.

But, then there were the down sides to the Dexcom. I didn't like that you couldn't see past results on the graph. You can only see what your most recent result is; the rest is only a graph. On MiniMed, you can scroll back through the numbers. Even though graphs are incrediably visual and helpful, sometimes I like to see an actual number.

Then there was the fact that it was a separate device to lug around. I had such a horrible time remembering to bring it with me. And if you happen to get so far away that you're out of range, you've lost the numbers/readings from that time period. With MiniMed, the transmitter stores up to 30 minutes of results and feeds it to the pump once you are back in range. Often times at work I am up from my desk and walking around my office. Sometimes I get stuck somewhere else for a while (20 minutes or so at times) in another area helping a client. If my Dex receiver is laying on my desk, it's lost all of those readings. One morning I even left the receiver at home and had to come back to get it after I got to work.

Honestly, separate device and all, if the readings were more accurate than MiniMed for me, I probably would have been more willing to switch to Dexcom, especially with the ability to hear the alarms at night. But, I decided to stick with MiniMed because there honestly wasn't a huge difference in readings for me (I've always had decent results with MiniMed) and I loathed having another device to lug around in addition to my meter, pump, phone, and mp3 player.

Here's my honest advice to anyone thinking about trying out either the MiniMed or the Dexcom: TRY THEM BOTH. And give them both a chance. If Dexcom already had their integration with the Animas pump, I might have actually made the switch. But for now, I like having only one device to deal with.

As with anything, Your Diabetes May Vary. I know a lot of people have horrible results with MiniMed's CGMS and do much, much better on Dexcom. I'm glad that you found one that works so well for you. But since they were both so similar in accuracy, it really came down to convenience for me. And MiniMed won out.

I would like to say that everyone I dealt with at Dexcom was amazing. From the first person I spoke with on the phone to the wonderful Dexcom rep that met me to get me started with the trial. These people truly seem to love their job and believe in their product. And I'd like to thank them for the opportunity to compare the two systems. It meant a lot to work that out for myself and see what was the best fit for me.

Monday, October 17, 2011

Simonpalooza NYC Style

This community that we have all created has become an amazing, wonderful family for us. I know that we realize that, but the past week has more than proved it. Our friend Simon (@STroyCrow) lives in Australia. More and more, we've had people from around the world entering our community and it's wonderful to see.

The man of the hour (or the week, as the
case may be).

Simon decided he wanted to come to the States. To see us. For months he worked more hours per week that most of us even think is possible. All to come visit us. So when I found out that he was making a stop in my favorite city in the world (New York people!!), I knew I had to go.

After a few bumps along my own planning, I made it to the city a few days before the actual Simonpalooza event. This allowed me time to meet up with some people who weren't going to make it to "official" event on Saturday. It also allowed me to spend some time hanging out with Simon BEFORE there were a million people around.

Some things I learned this weekend were that Simon is an amazing person (even though I think we all already knew that). He's got a huge heart and an amazing amount of determination. He wouldn't have been able to come to the U.S. without such determination.

Met with Jennifer on Friday since she couldn't make it to
Simonpalooza on Saturday.

I was also reminded how much this community is bonded. While most of us have never met, we are all friends. There were so many people I met for the first time at this meet-up (nothing like an Aussie to bring out the people that no one else can!). But just like it always is when I meet someone from the online community, it's like we aren't meeting for the first time. It's like meeting old friends.

Hanging out with these girls is never boring. :)

There were so many people there that I have met before. And seeing them again makes me realize how much I miss the face-to-face interaction with the people who have become some of my closest friends, and thankful that we have technology to keep us in touch in the times we are apart.

Two of my favorite people!

As I spent time with another friend with diabetes when I got back to Tennessee, she pointed out something that reconfirmed something for me. She said that those of us with diabetes have made something so positive out of a thing that can be so negative. Diabetes can be a truly devastating thing on so many levels. But things like the D-OC and the wonderful meet-ups in real life, and the knowledge that we have each other to lean on has really helped us put a positive spin on living with a chronic illness.

This picture was almost five years in the making!

I apologize for such a ramble filled post, but I'm still exhausted, having only made it home this evening. But know that this weekend possibly changed my life. It was unlike any other meet-up I've ever been at and I'm grateful and blessed to have been able to be a part of it.

This was a hug and run, since Kelly didn't arrive until
right before I had to leave, but I FINALLY got to meet her!

Friday, October 7, 2011

No D Day

It's that time again. Since I've been horribly behind in posting about the thing that we aren't supposed to post about today, I figured now was as good a time as any to get back to blogging. :)

There are so many things that I love and so many things that I love to do that don't have anything in the world to do with that thing we won't mention. I couldn't decide if I wanted to talk about music, or theatre (check out my other blog HERE), or something else.

I finally decided that cakes were going to be the way to go. Many of you know that I am a hobby cake decorator. It's something I find fun (most of the time), and it's about the only thing that I am talented at that deals with art. Want me to draw you a picture? Ha. But if you want me to put a picture on a cake... I can do that. :D

Here are some of my recent "adventures." I hope you enjoy!

Monday, September 19, 2011

Dexcom Trial - Post 2

Post two. Last night I lost several hours of feed on the receiver. But I'm sure it was my fault. I hadn't charged the receiver and I think it was just having trouble picking up the signal. I charged it today at work and there's not been an issue so far.

Accuracy today has been about the same as MiniMed. They are usually all within 20 points. I am noticing a faster turn around time. When my blood sugar starts to move quickly (after eating, treating a low, etc) the Dexcom picks up the changes way sooner than the MiniMed. But when my blood sugars are fairly stable, they both are sending about the same results.

I had some questions asked of me in my comments on my last post, so I'll do my best to answer them today. Adhesive: so far it's okay. The very edges of the tape are starting to peel up though, and it makes me wonder if I'm going to make it the full 7 days. I tried to find some Skin Tac here in my (very) small town to no avail. I found something similar, but it was way, way expensive and not worth the money if I chose not to go with Dexcom. I figure I'll tough it out the best I can for now.

Reception: I, too, have to keep my pump and my MiniMed CGM on the same side of my body of the read gets lost. It's annoying at times, but I have a system worked out so that it isn't an issue for me. The Dexcom has a much better range. They tell me it's around five feet. I've not noticed the exact amount. If I forget it somewhere, I'm usually far enough away from it that I'd lose signal anyway. But I leave it on my nightstand and it doesn't have problems picking up a signal, even when I'm sleeping on the transmitter.

Some of the things that I don't like about the Dexcom are the fact that you can't scroll back and see previous readings. I'm used to being able to scroll back on the MiniMed system, so it is a little strange to me. I also don't like that there is no place on the Dexcom to check to see the next calibration time. I'm horrible to forget to calibrate so I always check my MiniMed before I go to be to be sure I don't have to get up in the middle of the night to recalibrate. That being said, I've taken to calibrating both the MiniMed and the Dexcom with my pre-bed testing. So it's not a huge deal.

Let me know if you have tips, questions, etc. I'm here all week! :P

Sunday, September 18, 2011

Dexcom Trial

I'm ending my second full day on the Dexcom. I'm not sure what to say about it yet. First off, the insertion was way less painful than the MiniMed, but I think part of that was the fact that I couldn't see the needle on the Dex. And you can totally see the harpoon on the MiniMed sensor.

As far as accuracy goes, so far it's been about 50/50. I'm wearing the MiniMed now also. And I've been checking my blood sugar like crazy to compare them all. About half the time the Dexcom is closer and the other half of the time the MiniMed is closer. In a way that annoys me. I wish there was a clear cut, better option in order to make my choice easier. So far, there hasn't been.

I will also say that I am having a horrible time remembering to take the Dexcom receiver with me. I tend to leave it in one room and go to another for a while before I remember. And unlike the MiniMed, the Dexcom doesn't recover the missed data (MiniMed stores for 30 minutes). Other than wearing it on my pants, what's your suggestion for remembering to take it with me???

From those of you who've used both MiniMed and Dexcom I'd like to hear what the kicker for your final choice was?

Thursday, September 15, 2011


Tomorrow's the day I pick up the trial Dex. Other than that, I'm just burned out on diabetes right now. I'm so tired to the wild blood sugar swings. I'm tired of feeling horrible from highs and shaky from lows. Hypo unawareness? Lately it seems to have taken a vacation on me. On one hand, that's
a good thing. I actually feel my lows. On the other hand, I'm a shaky sweaty mess when I'm in the high 60s. I hate that.

Part of me is hoping that the Dex will kick me into wanting to try harder. The other part of me wonders if I'll ever care again. Sure, I want to be healthy and as complication free as possible. But lately, the immediate work is something I am not only unmotivated to do, it also seems that when I try it doesn't do any good.

I go back on my endo in October. My plan after my last horrible appointment, was to be able to go back and and have a lower A1c and to be able to tell my endo that I had "fixed" my motivation issues. At this point I don't know if I'll be able to do that. And I don't know WHY.

Why don't I have the motivation? Why don't I want to do the things I know I should. I start out every day with good intentions...and they seem to fall by the wayside.

Heck, at this point I don't even have the motivation to blog much about diabetes. And I've been severely absent on Twitter. I feel guilty. I miss my friends. I feel like I'm failing as a patient advocate. But I just kind of wish diabetes wasn't around right now. And the more I don't want to feel this way, the more it seems to get worse.

I also feel like the fact that I'm frustrated and burned out is the only thing I blog about anymore and I'm tired of being a whiner. So, know that I love you all. And pray for me and my lack of motivation. And hopefully I'll stop being so negative on this blog.

Monday, September 12, 2011

Trying Dex

Labor Day weekend was a really relaxing weekend for me. I didn't have any real plans and basically planned to do a whole lot of nothing all weekend. Monday was time for my "full change," meaning I was due to not only switch my infusion site, but also my CGM sensor. My sensor came off first since I have to recharge my transmitter for a while before reattaching. When I took my IV-3000 tape and medical tape off of my transmitter and prepared to disconnect I noticed that my transmitter had a crack in it. This is NOT a good thing, considering that the transmitter is supposed to be water tight.

I knew that it was time to order a new one. I've had this one since February of 2008. Over three and a half years. The average transmitter through MiniMed is only supposed to last around 2 years and is only under warranty for 6 months. I did what I thought I should, which is called the technical assistance line for MiniMed. After talking with them, they advised me to stop using the transmitter and call back on Tuesday to start the process of getting a new system approved by my insurance company.

Here's the deal: I really respect the things that MiniMed says. I do. But just like I used my sensors for more than 3 days, I had no desire to stop using this transmitter (even with it's cracks). Mostly because I had no desire to go without a sensor at all. I've become sadly dependant on them. And at that time, I'd not been getting strange readings or anything. So I taped up the transmitter with waterproof tape and medical tape and put it back on. But I knew this wasn't a permanent fix. And as much as I love my MiniMed pump and CGM system, I saw this as the perfect opportunity to check out the illusive Dexcom system.

I'll be honest, I have almost no problems with the MiniMed sensors. My readings are fairly accurate almost all of the time. I rarely have issues with "bad" sensors. And I'm certain that I don't have many of the same problems as a lot of MiniMed users have. That's most of the reason I haven't checked out the Dex earlier. But with the upgrade to the MiniMed Revel pump, I'm having issues hearing my alarms at night. And that worries me since I live alone. And while being high for several hours in a night is an issue, but not really a life or death issue...what if I were to have a low? That's the whole purpose for having the CGM system. To save my life.

So, I called Dexcom. I got in touch with my local rep and talked with her on the phone last week. She has graciously offered to let me test a Dex for a week (I could have done it through my doctor's office, but my next appointment isn't until mid-October, and it's a 2.5 hour drive for me). I meet with her Friday. So far, my experience with Dexcom has been good. I've gotten great customer service. And I'm excited to try the Dexcom out.

I'll be blogging about it after I get hooked up. I may even post daily, I'm not sure yet. Also, on the good side, I have a co-worker who's husband has the MiniMed CGM and happens to have a spare transmitter, which they have graciously let me borrow in case my current transmitter bites the dust and until I can make a decision on which system I'd like to go with.

Sunday, September 11, 2011

Over Your Shoulder

I took my first trip to New York City when I was 17 years old. There were sixty-nine of us from a small town in the South that raised enough money to go on our Senior trip. Stops in Washington D.C., Hershey, Pennsylvania, and New York City were on the agenda. Most of us had never traveled much. Some of my classmates had never left our state.

Out of all the things we did, my single most memorable moment of the stop in New York was when we were leaving the city for the final time. It was late at night. As we drove out of New York my high school principal stood up and turned around and said, “Look over your shoulder. This may be the last view you ever have of New York.” I turned around. The unmistakable lights of the city light up the sky. In the distance I saw the World Trade Center buildings. The iconic markers in the skyline of New York. I sighed.

It turns out my principal was right. Many of my classmates would never and will never return to New York. I did. But only after the skyline, and the world, had been changed forever. In many ways the New York I visited in 1999 is nothing like the New York that I know now. It’s strange to me sometimes. When I think of 9/11 my first memory isn’t of the newscasts that played for weeks and months after the attacks. Of the buildings and the smoke and the horror. My first memory is of what I saw when I looked over my shoulder and out that bus window that final time.

The closer and closer that the tenth anniversary of 9/11 has gotten, the more and more I tried to avoid thinking about it. But the truth is that we can’t avoid it. Ten years ago the world changed forever. American changed forever. I changed forever. I didn’t need to know anyone in New York. I didn’t need to live there. I didn’t need to be a frequent visitor. It didn’t stop the unmistakable change in my life.

As horrible as those hours, days and weeks following the attacks were, I saw something that I don’t think many generations have seen. I saw Americans coming together and supporting each other. It didn’t matter what race they were or what nationality. Gender, political affiliation, social status….it all took a backseat to the fact that we needed each other.

I was twenty years old. Not a child. But by no means an actual adult. In that time of life when you are trying to figure out who you are and what you want out of life was a time I also learned that the world can be cruel, and people you’ve never met can be kind. I didn’t need to know anyone who lived there.
That day left a mark on my life.
Since that time so many other things have changed in the world. I think we often forget, or try to block out the feelings of companionship and connection that we felt with complete strangers right after the attacks. Remember that. Remember that love you felt for complete strangers. Remember that anger you felt for the horrible things that were happening. Remember it. I know I do.

So let today be a day that we remember these things. Let today be a day that we are reminded of what we lost as a nation. Even if you (or I) didn’t know a single person who perished that September day, remember the innocence we lost.

But even through all those memories, and all of my memories of my many trips to New York, one of the strongest will always be that last view. That over the shoulder, out the bus window view that would be my last view of the Twin Towers, and one of my most powerful memories of New York.

Thursday, September 8, 2011

A "Your Voice" Hiatus

For the past month I've been having guest bloggers twice a week as part of the "Your Voice" project. I wanted people who aren't bloggers to have a chance to share their stories about diabetes. At first the posts were coming in fairly well, but now they have dwindled. However, I am NOT abandoning this project. Unoffically, it has no end. All the posts are still linked and all the information on how to submit a post is still listed at the top of the page.

I encourage you to submit a post if you'd like. Even if you've already submitted one. I hope to continue this project so that people living with diabetes can have an outlet to share without the time commitment of a blog of their own. So, if you know someone that might like to share a story with the Diabetes Online Community, click the little link at the top of the page for Info on the "Your Voice" project.

I can't wait to share your story.

Wednesday, September 7, 2011

Readers – Help Improve My Blog & Share Your Thoughts!

I wanted to share this new project I’m working on with WEGO Health to learn more about my blog and about all of you who read it!

First some background: For those of you who aren’t familiar with WEGO Health, they’re a different kind of social media company focused on helping Health Activists – folks like me who use the internet and social media to connect with others around health topics. WEGO Health’s mission is to empower Health Activists to help others, and they offer Health Activists the chance to get involved with video through, to learn and connect through webinars and chats, and to gain a voice in the healthcare industry through insight panels and the Health Activist Speakers Bureau.

Now WEGO Health is launching the Reader Insight Program – helping Health Bloggers like me to gather feedback from their readers, while telling you a bit about yourself. At the same time, WEGO Health has a chance to see if any of you are Health Activists eligible for their programs. I know many of you out there are as dedicated sharing health info and I have a feeling you’re Health Activists too!

I agreed to try the Reader Insight Program because I’m excited to learn more about why you visit my blog and how I can make it even more valuable for you. I hope you’ll take a moment to share your thoughts with me by taking WEGO Health’s Quick Quiz. By taking the quiz, you’ll help me learn what you need – and you’ll also receive customized social media tips for yourself!

A few things to know about the program:
- WEGO Health will gather your quiz responses and feedback for 2 weeks starting today. After the 2 weeks are up, they’ll create a Reader Insight Report for me (then I’ll share it with you!)
- Your responses will be shared with me anonymously – please be candid!
- Your information will not be shared or sold by WEGO Health

Thank you for helping me make my blog even more engaging! I can’t wait to see you what you think!

Tuesday, September 6, 2011

Simple Meals

I'd like to share another post by my friend Sherry. She has some wonderful posts that she has sent me and she always has a great story to tell. Today's post hit me especially hard because I know how true it rings. When is the last time you had a simple meal? Truly?

Most of the time I don't even realize how much time diabetes takes.  I mean, you just test, bolus, calibrate, test again, etc all the time without thinking about it.  Food doesn't look like looks like carbs and numbers and boluses and wondering if you are going to get anywhere close to matching everything and not feel like crap later. 
I haven't been diabetic all my life.  I used to sit down and eat without thinking of anything but the food.  I can sort of remember "before diabetes", but not really.  The first year of my diabetic life was so chaotic.  I was diagnosed with type 2 and given medicine. I tried so hard to keep it between the lines, blood sugar wise.  I measured everything, sized everything, even picked the shredded carrots out of salad lest a tiny carb pass my lips.  I could give you the carb count on any rock or breath of air you wanted.  Of course, none of this worked.  Terrible blood sugars all the time, totally sick and the weight dropping off at an alarming rate. When I was finally diagnosed with type 1 and started using the insulin I so desperately needed, things were much better, but the anal retentive eating continued. 
I was sitting in Sonic drive- in while ago, waiting on food for my son and his friend.  I watched 4 beautiful children playing about in the little courtyard while their parents waited at an outside table for the food .  It was a gorgeous May Saturday afternoon, and my mind was just wandering about...thinking of the busy day I had just finished. When the food arrived, the children scurried to the table and sat like baby robins, waiting for Mom to dole out the brown paper bags of dinner. With mild interest I kept watching as the family unwrapped hamburgers while popping fries into their mouths.
All at once, I was shocked out of my daydream by I know not what emotion. My entire body startled.  It felt like someone had poked me with electricity!  The shock was from the realization that I had just watched a family begin eating and no one had bolused.  No one took out their pump, tested blood sugar, calibrated a sensor, or looked at what they were eating.  They just sat there and ate.  I just sat there and watched. 
I really can't put a name on what I felt while watching this.  As I'm writing this a few hours later, I still can't find words to explain it.  Something so commonplace for me, something I do every time food enters my mouth......this family knew nothing of it.                                                                                                                                                                                  

By direct contrast, while I tested, calibrated, eyed my food and bolused for lunch today, I found eyes on me....looking bewildered.  I was at a picnic with some casual friends and just did my diabetes thing right there while sitting in the grass with my hamburger.  I really didn't think anything of it, didn't think anyone was paying attention to me. My curious lunch mate asked lots of questions, which I answered to him and the several other folks sitting with me.  When I finished talking, everyone was totally silent as they lit into their lunches, peering over their sandwiches with an " I could never do that every time I ate" look on their faces. Well, you would if you wanted to live, I would have answered if the question had been voiced.  
There are times when the full force of diabetes hits me right between the eyes.  Today was one of them.  I still don't know how I feel about it......the blow is so hard I can't think.

Sheery Neergaard lives in the Nashville area. She was (mis)diagnosed with T2 diabetes in 2005, and rediagnosed with T1 (adult onset) diabetes in 2006. Married to her best friend Daryl for 27 years, she is mother to college student Corey and special needs son Elijah. Daryl and Sherry are houseparents at Tennessee Baptist Children's Home.

In her free time (!), Sherry loves squaredancing, gardening, sewing, playing handbells, writing, and most any kinds of craft. She is a former elementary school teacher and hopes to return to school to become a registered her words "just for fun."

Thursday, September 1, 2011

Diabetes Art Day

Today my normal Thursday "Your Voice" post is being put on hold because today is Diabetes Art Day! :) Diabetes Art Day is the brainchild of fellow blogger Lee Ann Thill. Lee Ann blogs at The Butter Compartment and is an Art Therapist! How cool is that?!

Last year was the first Diabetes Art Day and I was a total slacker and didn't participate. This year I didn't want the chance to get away from me again. So I did MY kind of art... I work with cake. :) Sure, it's a little contradictory, but I love working with cake and it's where I'm my most creative.

I wanted to do the two major symbols of diabetes (at least to me) awareness. The grey ribbon for Diabetes Awareness and the blue circle to represent World Diabetes Day. I also did mini cupcakes for these because I though that the mini-size was nice for less carbs per serving. Fat lot of good it does if you eat five of them at once. :D

As an added bonus... I did some plan cupcakes with sprinkles. Cause I know how much my fellow D-OC members LOVE our sprinkles. :)

Also, not to promote myself too much, but I'm still looking for "Your Voice" submissions from non-bloggers. If you're interested in sharing your story, click on the hyperlink above for info on how to submit a post. Thanks everyone! 

Monday, August 29, 2011

Type 2 Burnout: Wendy's Story

Wendy Pederson was one of the first people to contact me with a post after I announced the "Your Voice" project. Wendy is a facebook friend of mine, found through the legions of other D-friends we have in common.

She has a lot of d-related things going on in her life, but shared with me about her husband who refuses to sleep if she's had an alcohol beverage as he's afraid her sugars will drop too low in her sleep. And her chinchilla who sits & stares at her if she's too high or low (diabetic alert chinchilla?!?!)  She is also fighting to try to get a CGM which her insurance won't cover because she's a T-2, even though she's on insulin.

Wendy shares some of her frustrations with diabetes here. She can be found on her (little used, in her words) Twitter account @thewired1.

I’m currently T-2, insulin dependent. I’m frustrated, and dealing with my own dia-burnout at the moment.

I’m a 4th generation diabetic. My father was T-2 and in my memory at least, was reasonably controlled with oral meds. He passed 16 years ago from injuries in car accident. I do not remember my grandfather—he fell into a diabetic coma in during dental surgery when I was just a month old in 1973. My great-grandfather lost a leg to the D-monster sometime in the 20’s-30’s; it was gone before my father was born and he died in the 50’s.

I was diagnosed in March 2004. At once I felt both panicked, and relieved. There was a reason I was so tired after eating, so thirsty all the time, taking even longer to heal than normal and having recurrent ‘female’ infections! I clung to the memory of my dad taking his pills and being relatively ok, though he only followed his diet when my mother was with him. My boyfriend took it all in stride. After all, his brother had been diagnosed T-1 just a few years before so he “knew it all!” even though his brother lived out of state and had for years before being diagnosed.

The oral meds did not work for me. Insulin was a lot easier to deal with and kept me in far better control. I married the boyfriend in July 2005 and had bariatric surgery in December 2006. I had what I thought was my last insulin shot on December 3rd, 2006 and surgery on December 4th.

I’ve now been back on insulin for over a year. My weight is back up to near pre-surgery levels. My blood sugars are OK, and I’m trying to let “OK” be enough for now. I’m so sick of trying to keep on top of everything, and to have everyone think it’s easy, or no big deal, or this or that or… or… or…

My Diabetic Educator is also one who talks as if someone can be perfect when it comes to diabetes. “If you count your carbs right and adjust for activity, you should never go low and your highs should be minimal,” she says. “There’s no such thing as an unexplained blood sugar reading” is another so-called gem. I’ve looked at her and asked her to explain how I can go low 5-6 hours after eating when I know I under-treated. Or how I can be at 70 (which is low for me) and shaky, nauseous, and treating the low only to have it drop even LOWER for the next hour as I keep treating with juice boxes every 15 minutes. Until I finally tell myself ‘screw it’ & reach for a Snickers bar.

I try hard, so very hard, to not let diabetes define who I am. It seems the harder I try, the worse the burnout gets.

Anyone else have that sensation?

Thursday, August 25, 2011

Meet Daniel

I met Taylor's mother, Vivian in the D-OC. She is my closest neighbor in the D-OC. Sadly I don't get to see her and her family as much as I would like. But in meeting Vivian, and her T1 son Daniel, I also met the other amazing members of the family, including Taylor, Sarah, and Paul. This family is amazing all in itself, but I wanted to ask Taylor to share about her brother and diabetes for the "Your Voice" project. What she sent me touched my heart in more ways than she may ever know.

My name is Taylor, I'm 19. My brother, Daniel, is 13 and lives with
Type 1 Diabetes... But Diabetes is not him. He's a 13 year old boy. Goofy, odd, oblivious, and above all sweet (ba-da ch). In all seriousness though he's (in is odd way) the most compassionate 13 year old boy I've ever met. He also lives with Aspergers so the above statement really means something.
Yes, Diabetes is priority in his life. He needs to live and he needs to be healthy. Our family has learned a lot from the past few years while growing with Daniel. It's not easy, it's not fun, and it's scary to be honest sometimes...

But I don't want Cara's blogging opportunity from me to be complaining and telling you how bad it is. You know how horrid and tedious it can be. A lot of you submerge yourself in the negatives and that's no more healthy.

I rather tell you about the normal, silly boy who helps his little sister take care of 3 flocks of chickens. Who competes in 4H competitions and can tell you anything about just about any anime, game, game-to-be, system-to-be, etc. Who reads at a Senior level in High School as an 8th grader and borrows my dad's computer programming books to figure things out himself (and builds programs and games).

I much rather tell you about his sense of humor and how much he makes our family laugh on a daily basis. And how he's recently started working hard to learn to draw and make comics. How he wants to own his own company and be the boss --- and the advances he's making towards that right now. How he participates in band with his best friend and how much it drives everyone insane that he's so forgetful sometimes... but that's him.

I much rather tell you everything Daniel really is. He's a remarkable brother, a loving son (even if he's not much of a hugger), a quirky grandson, a faithful friend and just a really cool kid.

Yes, he's a Diabetic. No, he had no choice with that and it's not fair. He's in that fun puberty stage and life in every area is changing. His blood sugars are all over the place and random. He's about to be in High School next year which will put stress on him and he already doesn't like change --- but he's excited nonetheless.

Next summer he will face his first band camp. That comes complete with long hours in the sun from sun up to sun down, nonstop moving and working out and little, short water breaks. For a whole week or 2. That's a diabetic's nightmare I'm sure and it's going to be rough until he figures out how he'll respond to it, but he's not letting the Diabetes control his life. He's not letting it stop him at all and he'll get through this and everything else until there is a cure.

I'm proud of my little brother and my family. We have 2 chronic illnesses in the house alone (my dad lives with MS) and it's not easy. For the guys or for anyone else, it's not easy. I promise you though they laugh more than most family's I've ever met. We'll all admit we're scared sometimes, but why let the fear make you miserable and take things it doesn't have to away?

And thank you for this opportunity, Cara. I know it's a bit late blogging. But with all this being said I'll go back to the original topic she asked me to blog about --- I'm not a sibling to Diabetes. I'm a sister to Daniel... and I've learned so much from him. He (and my dad and quite honestly the rest of the family too) are inspirations. It's not fair but it's life, and we make the best of it and stay positive until there is a cure.

Daniel will be the head of a big gaming company one day. He'll do a lot of things. And he'll do them with Zack (Pump) and a big glass of Diet Pepsi by his side.

Monday, August 22, 2011

A Letter to Diabetes

Mary Lyn Schuh has been living with type 1 diabetes since age three. She has made it her mission – and her profession – to help find better treatments and ultimately a cure for type 1. Mary Lyn has gone from organizing her first fundraiser for JDRF when she was 9 years old (a “Quarter Fair” in her back yard with games that each cost 25 cents) to working as the Executive Director for the Middle Tennessee Chapter of JDRF. She and her husband, Jamie, have been married for nearly 8 years and live in a suburb of Nashville .

In an effort to put an interesting spin on the fundraising letter she send out to her family and friends for her JDRF Walk team this year, Mary Lyn decided that after 25 years, it was time she gave Diabetes a piece of her mind…

Dear Diabetes,

I hate you.

You came into my life – completely uninvited and unexpected – when I was just three years old. You forced me to grow up too fast. And you’ve been hanging around ever since then, trying your best to mess stuff up.

You stink at doing what you’re told, Diabetes. No matter how hard I try to control you, you’re always irritatingly unpredictable. No matter how hard I try to push you into the background, you manage to show up and make yourself the center of attention. You can see a memorable moment coming from a mile a way and you try to make it all about you instead. You’re so selfish.

You have a real knack for embarrassing me too, Diabetes. You make my Continuous Glucose Monitor (CGM) beep and light up while I’m enjoying a movie in a dark theatre, making me look like I don’t know how to turn off my cell phone. You make me stop to eat Starbursts in the middle of my Spinning class while getting strange looks from the sweaty cyclists around me. And sometimes you make me into someone who is short-tempered and mean. You make me say things I don’t mean to the people I love. You make me look like a real jerk, Diabetes.

You know what else? You have a stupid name. When I tell people about you, they get confused. They never seem to understand that you’re the “type 1” kind, so they say stupid things like, “well, couldn’t you just eat less sugar?” They think I did something to deserve you, but you and I both know the truth. When you teamed up with my immune system to attack my pancreas, there was no stopping you. Things get dangerous when the two of you get together and I always worry that you’re secretly planning another attack.

And you’re always interrupting me. Do you know how annoying that is? You rarely let me sleep through the night. What’s worse, you rarely let Jamie sleep through the night – that’s just mean. I can never head into a meeting at work without tending to you first. You know how much I enjoy cooking and eating, so you try to mess that up too. Counting the number of carbohydrates in a great meal can really make me lose my appetite. And heaven forbid should I indulge in something like pizza or frozen yogurt, you always make me pay for that later, chasing down high blood sugars all through the night. You can be downright spiteful, Diabetes.

You’d think that 6-10 shots a day and countless finger sticks would be enough to keep you happy, Diabetes, but no, you’re much too sadistic, aren’t you? You weigh me down with so much stuff everywhere I go. I can’t even take a walk around the block without my CGM, insulin pen, and Starbursts – you’re so needy.

Sometimes, Diabetes, you really scare me. I can usually keep you from wreaking too much havoc in my life, but every now and again you really make a run at me. Next thing I know, I’m covered in a cold sweat, desperately downing juice, cursing you with each gulp. Being so close to the edge of consciousness, I am terrified that I could just slip away and not wake up. And I know how you work, Diabetes. You are always trying to cause problems with my eyes, my kidneys, my heart – you just won’t stop, will you? This is when I hate you the most, when I think about you stealing my eyesight or stealing years off of my life. You are despicable and you make me feel helpless.

But you should be the one who is scared, Diabetes. That’s right, you heard me! JDRF is leading the way in creating an artificial pancreas, a type 1 diabetes vaccine, and ultimately, a cure. They are funding a lot of really smart people all over the world and working hard to put an end to you once and for all. Plus, I have a whole bunch of people who care about me – in fact, I’ve copied them on this letter – and they are going to make donations to JDRF and help put an end to you as quickly as possible. There are a lot of us, Diabetes, and we’re full of hope and we’re coming for you!

One day I’ll tell my grandkids about you, Diabetes, and about how you used to be a big part of my life. And those happy and healthy kids will give me a funny look and start to giggle. When I ask them what’s so funny they tell me that talking about diabetes really makes me sound old because nobody has that anymore. But they ask me to tell them about you anyway, Diabetes, even though they’ve heard the story before, because they just love the part about the amazing party we threw when I was cured.


Mary Lyn

Thursday, August 18, 2011

Endo Troubles

My next guest post is from a dear friend of mine. I knew her husband when we were in high school and had stayed in touch with he and his sisters. When he married Angel, she and I connected on MySpace (yes, it was that long ago....) and had several chats about living with T1. Since then, I've had a chance to meet her several times and love getting to spend time with her and her family. I asked her to blog for me and I was thrilled to get her post, since it was on a topic that I know we have both dealt with before. So, on with the show:

Hey there! This is my first attempt at blogging. My wonderful friend Cara asked me to do a guest spot so here I am. My name is Angel and I am a lot of things, military wife, mother of 2, sister, friend, and diabetic. All of those and more make-up my life no matter which order I put them in. When life is good it seems that the diabetic aspect is first and taken care of before anything else. I spent way to long pretending it wasn’t something serious and life was crazy! Now in my late 20’s I try my hardest to keep everything balanced. So I thought I would share an experience from last week that really makes it hard to take care of myself.

So "textbook life" for a diabetic is a joke and I would like to take that text book and hit every doctor that believes it upside their head with it! I have had many endocrinologists in my 16yrs as a diabetic. Some have been wonderful, some make me want to scream and yell and be violent. In November 2009 my husband got orders to Davis-Monthan afb, az. Aka Tucson. After meeting with my PCM soon after arrival, I received my referrals for the endo.. First up... Julia Levi- all I'm going to say is she isn’t a real endo. She told me to test my blood sugar LESS and not to drink juice when low.

I called my insurance after the appointment and changed to Dr. Cordova-Kisse. She is a student at the University of Arizona and was under Dr. Thompson. Every appointment would go good until he came in. In April, I saw her and because of a DKA episode and my fear of it happening again while watching my kids. I took their advice and said goodbye to my pump for a little while and went on lantus. I don’t like the shots because once it is in, you can't take it out and you can't disconnect from it like with the pump. I was happy for the time being though.

After a few months the weight I had lost had started to come back and my numbers were going crazy. So I hooked my pretty pump back up and everything started to get better! I went to my endo for a check-up and to have him sign the scripts for Minimed so I could get my supplies…. If it was only that easy!! My blood pressure was extremely high, my heart was beating odd, and then Dr. Thompson walks into the room saying this “Good morning Mrs. Brumbaugh, I see you are not doing well, I think you and mother nature are having a big fight. I don’t think you know how to basal or bolus and I truly believe that you are being a 'bad diabetic.' I am not going to endorse your pump and will put that in your chart, you need to learn how to do this.”

Hearing this I was BEYOND PISSED! This doctor wouldn’t sign a script to renew my cgms earlier this year because he believes if you can test your blood you don’t need it… DERR! I picked up my purse called him a few names and told him he has no right being an endocrinologist and left. After I got into the car reality hit me. I just left the office with no Humalog, no pump supplies and no lantus. LOVELY! I called my PCM and was able to see her the next day, my PCM was about to sign all the scripts until she checked with her head doctor and found out she can't ignore what the other doctor put in my records (they are part of the same hospital).

Anywho, I called my pump company and told my rep that I don’t know what to do. She asked me who my doctor was, and after telling her she said "WHOA REALLY? He took you as a patient with a pump? He hates pumps!" Now that was a fun fact to learn. I was recommended by Minimed to make an appointment with another endo, and will see her soon. Minimed also came through for me and sent me supplies to get me to the appointment at the end of the month.

I have a hard time going to these doctors as it is. They think they KNOW what diabetes is. They know what their text book said. And can’t see past that. I think that an endo or diabetic educator should live like one for at least 5 yrs before they can advise a type 1… Which is why I am going to school for nutrition and eventually will become a diabetic educator. I hope its soon before I lose my mind from having to deal with all these jack wagons. I find that these kinds of doctors are not what type 1s need, they are the opposite.

Thanks again Angel! I'm so glad you chose to share this story with us.