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This Sunday, if you tune in to dLifeTV on CNBC at 7:00 pm EST, you will see the one, the only, NINJABETIC himself grinning back at you from the screen. That's right - our very own SuperG will be part of a dLife segment this Sunday about smoking cessation.
Some people were born to be on the big screen. And judging from George's vlog posts and his appearance on dLifeTV, it seems like he is destined to be a STAR! Don't miss it!
Sunday morning, bright and much earlier than I was ready for, I found myself at Cranbury Park in Fairfield County for Connecticut's JDRF Walk to Cure Diabetes. Despite the rain and the extremely muggy conditions, Team dLife represented and made me proud to be a part of the crew.
The walk, for some reason, wasn't along a track but instead was along a mild hiking trail. This was fine for people who were able to traverse the rocky terrain, but for some parents piloting strollers, it was tricky indeed. (Note to CT JDRF: Maybe you should have called it the JDRF Hike for a Cure?)
I had the pleasure of being escorted by my co-worker's daughter, who is four years old but wise well beyond her years.
"Let's go in the wood! We can camp in the woods. I saw a movie about bears. And snakes. I saw a snakes movie. Hey, there's a path - let's go that way and we can camp in the woods overnight!"
"No way! Your mom would be mad if we went camping without telling her. And why do you have so much energy? Did you drink a whole pot of coffee this morning?"
"I drank ten pots of coffee." She turned to be and gave me a 1,000 watt grin.
I believed her.
Working at dLife, as a person with diabetes myself, is a unique experience because I walk the walk and talk the talk. But at the JDRF event on Sunday, it was nice to see everyone walking the walk, right alongside me.
Thanks to everyone who came out to the walk, and onward to the RI JDRF walk on October 26th!
... The Friday Six. It's time for a week-end wrap-up, and to share some of the latest bits with you. I hope you're all having a good week. I am so ready for the weekend (and the debates tonight)!!! I'm going to just jump right in with number ONE ...
1. Last week, I posted a photo on D365 of Tickles the Tapeworm, and just a few days after posting it, a package of Parasite Pals stickers was delivered to my office, courtesy of my Flickr friend, Stinky_Harriet (aka Liz). THANK YOU, LIZ!!! You totally made my day, and I shared these stickers with my editorial team. (We thought they were digustingly awesome.) If you're following the Diabetes365 crew over on Flickr, you may have seen some of the wonderful photos from Liz. Click through and check out the photos, and give some love to Sara, who is on the cusp of finishing her 365 days!!
2. In CGM news, there's a chat with Aaron Kowalski on Monday, September 29th, in the DiabetesTalkFest chatroom. Dr. Kowalski will be answering your questions about the JDRF CGM trial that was in the New England Journal of Medicine last week, so check it out if CGMs are on your wishlist. (It's on mine!)
3. (Full disclosure: This next bit has it's fair share of we in New England call "wicked bias.") My husband has teamed up with some of his old buddies from the fitness world to create a cool and informative health and fitness site called I Look Like Fit. There's a ton of useful information on the site, including workouts, diet ideas, weight loss tips, and even a social networking page called - wait for it - FitHeads. So, if you're looking to tone up or trim down, this new site and its social networking sidekick could be a good fit for you.
4. This Sunday, Fairfield County is playing host to the JDRF Walk For A Cure, and the dLife team will be there. (I'm hoping it doesn't rain all over our heads during the walk, but we're badass enough to take the risk. Diabetics don't melt!) Are there any SUM readers who will be walking on Sunday? If you're there and you see a cloud of white dLife t-shirts, come by and say hello! :)
5. In cake-related news (this may be my favorite segue ever), the popular site CakeWrecks has its first comment controversy going on, all about a cake shaped like an insulin pen. Personally, I find this cake to be amusing. The comments on this post, however, are less entertaining. Plenty of diabetic-bashing going on in there, from laying down guilt on people with type 2 diabetes to the stereotype that diabetics on the whole can't eat anything but carrot sticks and ... dreams, I guess. If you want to weigh in on this mess, feel free. Stop the ignorance, if you can.
6. And finally, I vlogged. I vlogged from my stupid car, because time is limited this week but I've felt delinquent as a vlogger (and I've been enjoying the ones from SuperG and Sara and Windy, and Landi even joined the fray!) and I needed to catch up. If you skip on over to my YouTube channel, you can find my latest attempt at vlogging. And, like George mentioned in his post today, I'm open to any questions because, quite frankly, sometimes I have no clue what to say. :)
The weekend should be rainy here in New England, but it's still the weekend, and that makes it awesome. Have a good one, and I'll catch you on Monday!
There's a lot of buzz in the blogosphere today about insurance denials and appeals, starting with an article in the Wall Street Journal about "Pushing Back When Insurers Deny Coverage For Treatment." Scott Strumello brought this article to my attention this morning via his comprehensive blog post about it, and Bernard sent me there again with his perspective. And after reading everyone's take, in addition to having experienced three denials for CGM coverage from my insurance company (Oxford Health), I realize that I have gone at this problem the wrong way.
Insurance companies don't care about my future baby. They don't care about my A1c. Unfortunately, insurance companies are watching dollars and cents, not good sense. A passionate letter from a patient doesn't even come close to moving an insurance company to provide coverage or overturn an appeal. They seem to respond to "the facts" only, and I should have attacked them with facts to begin with. Instead, I took the personal approach, which left me denied three times. And it's partially my fault because I expect them to care, even when I know they won't. My approach was arrogant, thinking they'd respond to actual emotion.
But this time? No emotion at all. This appeal was just the facts, ma'am.
I sent the Connecticut Department of Insurance a packet of information this morning, in hopes of having my Dexcom CGM system denial overturned. I included the following:
Under the guidance of the Region Managed Care Director at Dexcom, the supporting documentation I included was very factual and devoid of almost any emotion. My personal letter, which was written with the help of the Dexcom rep and is so stoic and so dry that it doesn't even sound close to anything I would say is supposedly an example of what "will work." The letter from my endocrinologist cited my elevated A1c, the ADA A1c standard for pregnancy, the Factor V issue, 22 years of IDDM, and various complications I've experienced (including the cotton wool spot, high blood pressure, etc).
Dexcom also provided a packet, which included the recent NEJM study results and other studies supporting the use of CGM technology to better control diabetes. The letter from my Dexcom rep included a demonstration of the proven benefits of CGM technology on health outcomes, and also outlined the appeal-denied-appeal-denied cycle that I've been in for the last few months.
So it's in the FedEx box now and waiting to be sent off to the Connecticut Department of Insurance. Each item is tabbed and in the order requested by the appeal form. It's on time, comprehensive, and fact-filled. I hope this appeal gets my CGM approved.
The only frustrating part of this process was that I couldn't really lash out. I couldn't tell these insurance companies what I was really thinking, which was along the lines of "WHAT THE FUCK IS WRONG WITH YOU? CAN'T YOU SEE THAT THIS TECHNOLOGY WORKS AND I WANT A HEALTHY PREGNANCY AND WHO ARE YOU TO TELL ME I'M NOT APPROVED?!!" (Ahem. Sorry.) It's infuriating to play by their rules, but I'll do whatever it takes to obtain approval. It makes me absolutely crazy that this technology exists and it has worked for me and it's still not covered. Don't insurance companies want people to remain healthy? Isn't there a cost-benefit to them for acting proactively instead of reactively? What is wrong with this healthcare system?!
I'll wait patiently. I'll hope that this fact-driven approach gets me somewhere. And I'm very thankful for the assistance and support I've received from Dexcom, dLife, and my friends and family.
But I had to get my digs in somewhere - the memo line of the check is "ridiculous fee for appeal." Jerkface insurance company. They're messing with the wrong girl.
(I hope.)
Us Barton girls stick together - it's a proven fact. And when a Barton girl emails me about her efforts to raise funds for diabetes research, I have to do what I can to help her raise awareness. Meet Valerie Riordan, both a fellow Bartonian and a type 1 diabetic, and her campaign to Kiss Diabetes Goodbye!
Kerri: What is your diabetes story?
Valerie: I, like you, was diagnosed with type 1 diabetes in August 1986. Twenty two years ago this week. It was one week before my 11th birthday. That was one birthday I'll never forget! I remember seeing the doctor the day after I was diagnosed. He told me I couldn't have cake and ice cream at my birthday party. I was devastated. What's a birthday party without cake and ice cream?! And so a life with diabetes began.
It hasn't always been an easy road. I am very thankful that early on I found many friends and a very large support group in Clara Barton Camp. At home I was the only one in school who had diabetes. At camp I was one of many. I loved being in a place where everyone understood. I wish those camp years could have lasted forever.
However, my camp days did come to an end, and when they did I suffered a little diabetes rebellion. I didn't want diabetes, so I was going to pretend I didn't have it. I cut so far back on my insulin that I pretty much wasn't taking any. The same was true for food. That was pretty much nonexistent as well. Of course I wasn't seeing my endo at this point either. I got very, very skinny, but in my mind I was in control. Even though my diabetes wasn't.
Fortunately for me, there was a new endo at the office I went to. She really helped rescue me. She got me and my diabetes back on the right track. She was very encouraging and didn't lecture me. With her rooting me on, I worked really hard to pull things together. But there were still a lot of ups and downs.
Then in August 2000 I got married. A year later, my husband and I were ready to start a family. Then before I could even come up with a plan with my endo, I found out I was pregnant. I, very quickly, whipped myself into shape with a lot of help from my endo. When I was 4 months pregnant my endo started me on my first insulin pump. Suddenly I was in the best control I had ever been in. My A1C went from 8 to 4.8! I amazed even myself. My very healthy baby boy was born in May 2002. Then I was blessed again with a beautiful little girl in August 2005.
Now at ages 6 and almost 3, they are seasoned veterans of diabetes. They watch me do my blood tests everyday. In fact I had to give my daughter one of my old machines to play with. She kept swiping mine because she wanted to do a blood test like mommy. They know mommy's pump is not a toy, but occasionally they get to help mommy by pushing the blue button. My daughter loves to help me out by putting my pump in my pocket for me. They know that when mommy's blood sugar is low I need sugar fast and they know exactly which soda to get out of the refrigerator for me. And my son amazed me when he had to get blood taken one day. They put the needle in and he didn't even flinch. He said he knew it wouldn't hurt because he watches mommy get it done all the time.
They don't know my life without diabetes. They only know their mommy has diabetes. For all they know I've always had it. That's okay for now, but I hope someday that will change.
For now I just do my best to take care of myself, not only for myself, but for them. So I may enjoy watching them grow for as long as I can.
Kerri: What is the inspiration behind 'Kiss Diabetes Goodbye'?
Valerie: A friend of mine, who's son has diabetes, told me about Dr. Faustman and the research she was doing. (Editor's Note: YAY Dr. Faustman!) She was very enthusiastic about wanting to do something to raise money for this project and she wanted me to be involved in it. She had an idea of what she wanted to do, but couldn't quite seem to make it happen.
Also, the mom's group that my friend and I belong to was getting involved in doing community service projects. They were looking for fund raising ideas and charities to give to. So, I began thinking of some ideas.
While I was trying to come up with something, I came across this idea on the Arbonne yahoo group that I belong to. It seemed like perfect timing!
Kerri: What makes your fundraiser different from all the other diabetes fundraisers?
Valerie: Having a son in elementary school, I've seen many fundraisers come through my house. I feel this fundraiser is unique because it's different than anything I've ever seen, it's affordable and it's something I would use.
In fact I do use lip gloss....every day. (Editor's Note: So do I.) So do most women I know. Also, many teens and even little girls love lip gloss. My two year old daughter loves to swipe mine out of my purse and use it! So, I know this fundraiser would appeal to many people.
A lot of times, with my son's school fundraisers, I find myself spending more money than I want on stuff I don't really need. In times like these when money is tight, most people would be willing to buy something they are already using, especially if they know it's for a good cause. It wouldn't have to be an extra expense.
Kerri: Why did you choose to support Dr. Faustman's research?
Valerie: For over twenty years I have heard that there will be a cure in my lifetime. Throughout those years I have heard many, many stories about new research and new procedures, but still no news about a cure. After so many years of getting my hopes up at every story and nothing coming from it, you kind of stop believing that a cure is going to happen. And all the stories become just that....stories.
But something happened when I read Dr. Faustman's story. Something about this was different. Maybe it was just me, I don't know, but this was the first time I'd ever read a story and it felt real. It felt like, wow, this could really happen. We're really close to something.
Editor's Note again: For more information on Valerie and her valiant efforts to raise both awareness and funds for a cure, and to get involved with Kiss Diabetes Goodbye!, contact Valerie directly at Star82600@hotmail.com. Tell her you saw her on SUM!
I cooked last night. (Contain your shock, please.) I made chicken and vegetable soup, whipped up some delicious sugar-free pudding, and baked a chocolate cake for my co-worker's birthday. Nothing caught on fire, nothing turned to sawdust, and consuming aforementioned tasties did not kill anyone.
However, the cake baking was a little bit of a thorn in my side, because I was soooo tempted to lick the mixer beaters (no, not while they were spinning) and to stick my finger in that thick, chocolate frosting.
But HA! I did not succumb to temptation! I baked that cake, frosted it, and put it in the fridge, all without even a taste. HA HA!!! Take that, diabetes!
After the cake was all done, I sat down on the floor with my laptop to go through my emails. But the screen was too bright. The colors were all ... off. And my hearing was fading in and out, like someone was shaking a blanket out to spread over the bed. My head was in a complete fog, and Abby was weaving between my elbows, meowing frantically.
So I tested.
And after all that baking, after avoiding that delicious treat and trying to "stick to the plan" and "be a good little diabetic," I saw "35 mg/dl" winking back at me from my meter. Eight gulps of juice later, I was laying on the living room floor, telling Chris, "I didn't feel that one coming at all," and "If I lay still enough, I sort of feel like I'm on a record player, spinning."
Damn you, irony!
About once a month, there's a certain spike to blood sugar patterns that is both predictable and completely chaotic - welcome to this morning's TMI post about diabetes and the menstrual cycle.
Two months ago, when the gene for the Factor V Leiden mutation was detected in my blood, my endocrinologist and my gynecologist decided to remove me from my birth control pill and switch me to something with less of a clotting risk. Since I decided to go on the pill when I was a freshman in college, I have always been on the standard estrogen/progesterone pill (I was on the ortho-tricyclen, then tri-sprintec, if you want a good ol' dose of TMI). When it came to diabetes and this kind of pill, there was plenty of information out there, so I had a good idea of what to expect.
But this new one? The progesterone only? It's a bit of a wildcard. I'm currently taking the Errin pill (28 days of hormones, no "placebo" pills) and these first two months have been pretty damn tricky. I'm not sure if it's my age, the ticking of my biological clock, or just the changes in my body as I age, but this pill made my emotions run wildly. And the information I've received on this pill has varied. The internet (oh Internet!) informs me that the brand name version of this pill comes with a diabetes-specific warning: "Diabetes patients - Ortho Micronor may affect your blood sugar. Check blood sugar levels closely. Ask your doctor before you change the dose of your diabetes medicine."
Oh for crying out loud ... another variable?
I was on the old pill for almost ten years, in total, and I was used to the effects it had on my body. I was accustomed to the 28 day cycle, the guaranteed four day period, and the pre-period spikes weren't dramatic. I actually noticed a drop in my insulin needs while I was on the placebo week, and I had a decade to really adjust to the whole process. This new bit, with a whole new hormone regimen, has thrown my body into the spin cycle. I can't anticipate the highs because I'm not sure if/when the actual period is coming. (Part of the trick with progesterone-only pills is that you may not always have a period, which makes my brain melt.)
Aside from these unpredictable start times, this seems to be the first pill that affects my emotional state closer to the end of the 28 day cycle ... for example, I came across this video of a singing little six year old and promptly burst into tears. I had a few days of feeling amped up, over-emotional, and anxious, and these emotions had their own little tea party with my blood sugars.
I want stability. My whole reason for being on birth control at this point is to protect my body from pregnancy, because my A1C is spikey. So I take the pill to protect body-from-baby/baby-from-body, yet the pill itself could be contributing to an elevated A1C. It's frustrating because pill options are limited (thank you, Factor V), pregnancy is not encouraged at this A1C, and I'm a young, newly-wedded woman with a healthy libido. (Kerri! Your mother reads this blog! And so does HIS mother! Ahhhhhh! Go delete that! I'll wait.)
Nope. Can't delete it. This is real life with diabetes, awkward bits and all. Anyone out there on a mini-pill and seeing some numbers (and emotional) fluctuations? I'm trying to learn everything and anything I can, with the end goal being Nice Healthy Baby Range. Talk to me - I need some advice!
Holy late post, but better late than never, right, me hearties? (Oh, this pirate crap will be the very death of me.) Jumping right into this week's Friday Six!
1. Yes, it's Talk Like a Pirate Day. In celebration of this silliness, I offer you the Pirate Translator, some pirate jokes, and a Twitter avatar, courtesy of my extremely silly brother: Kerri the pirate.
2. The JDRF is still taking applications for the 2009 Children's Congress - but not for long! The deadline for application is October 6, 2008, so if you and your child are interested in applying and representing the diabetes community before Congress, now is the time to apply. Visit the JDRF website for more information.
3. Another D-related event is the First Annual Diabetes Rockstar Cruise, brought to you by the folks at Diabetic Rockstar. According to Sara, a SUM reader and a member of the Diabetic Rockstar crew, "The most exciting part about the cruise is that Carnival has a program called Cruising for Charity, where we will be receiving a portion of the proceeds for Fight It! our charity arm at Diabetic Rockstar. Our funding goes to uninsured, in-need and newly diagnosed diabetics who need supplies and additional help." Unfortunately, I won't be attending this event, but if you're interested in learning more about this cruise, taking place next May, visit the Diabetic Rockstar website.
4. And in my own personal diabetes news, I've been embroiled in the battle with Oxford Health of Connecticut for CGM coverage. Fun. (Sarcasm.) I have a solid insurance representative at Dexcom who is helping me get all the paperwork together for my external appeal - yes, this is the one I have to send them a CHECK for, greedy bastards - and I'm working with my endocrinologist on a letter highlighting pre-pregnancy planning and the need for tighter diabetes control. This is a paperwork nightmare, and now I understand why lots of people never get to this stage of the appeal, because it's so damn complicated. BUT I am moving forward and will file this external appeal by the end of next week. Hopefully this will overturn my previous three denials. In any event, I'm almost positive they won't refund the $25 filing fee. Pricks. ;)
5. On the Children With Diabetes site, there's a short video about Friends For Life 2008, and you'll find a smattering of diabetes bloggers in there, including Sara, Heidi, Bennet, and me! (And I look seeeeerious, since they caught me in the pregnancy seminar and I was all panicked ears.) Check out the video!
6. And I'm still woefully behind on vlogging, but I'm hoping to get a clip up here by Monday or Tuesday. Next week is pretty nuts - I have plans for dinner in the city, I'll be at a seminar at the UN midweek, and I'm gearing up the dLife crew for our JDRF walk next weekend - but I need a little face-time. I'm sort of short on vlog topics - any ideas from you guys? For now, all I have is this sort of crummy quality clip from The Swell Season show on Wednesday. I have another one, of one of their new songs, that I can post this weekend after I pull it from my KerriBerry.
For now, I'm off to RI for yet ANOTHER wedding this weekend (btw, Chris and I have been married for four months as of yesterday - holy cow!) and to spend time with the family. You guys have a great weekend!!!
I play all tough sometimes, but in reality, I'm a complete softie. Smiling babies warm my heart. Sunrises fill me with hope. The majestic beauty of the sharks at the aquarium make me all moody, for crying out loud. I'm ridiculous.
Some songs give me uncontrollable goosebumps. Music is one of those things I need to have while writing, thinking, working ... living. Last night, Chris and I and two of our friends went into the city to see The Swell Season in Central Park. I've seen Glen Hansard perform with The Frames several times, and he performs with the kind of passion and convinction that would cause me to vote him President of Everything, should such an election come up. And Marketa Irglova, his co-star in the movie Once, brought nothing short of the same passion.
Listening to music under the stars in Central Park ... hell of a way to spend a Wednesday night.
Most people find Six Until Me by Googling something like "diabetes blogs" or "type 1" or "where the heck do I hide my pump?" But sometimes they come to my blog via channels I never anticipated. In checking my statcounter this morning, I saw some search terms leading people here that made me laugh out loud. Case in point:
And the best of today's bunch?
"Nobody comes between me and my pump"
Well damn straight!
"Are you ..."
"Yes. Hi! Are you ..."
"I am!"
When people who have never met before, yet know one another from the blogosphere, suddenly collide in person, it's always a fun mix of awkward, comfortable, and excited. And last night I had the wonderful opportunity to have dinner with Karen from Bitter-Sweet Diabetes, R (who I have met several times before), and a woman I will call MW (for "MathWhiz" because she is good with numbers and I am absolutely not).
I've mentioned it before, but the diabetes connection is an instant and easy discussion, helping people who otherwise may have nothing in common to talk freely and comfortably about something that is a huge part of their lives. Karen, R, MW, and I had trouble ordering our dinner because we were so busy chatting that we barely cracked open the menus.
What was really interesting to me was that MW was 29 years old, like me. But unlike me, she was diagnosed 6 months ago. I couldn't stop thinking about that. R and Karen, also diagnosed as children, have spent most of their lives living with diabetes and for the three of us, life has always included diabetes management. For MW, diabetes and all its bits and pieces were new to her life. Life before diabetes for me is something I can barely remember, and it was all I could to do keep myself from quizzing her: "How do you feel now that you have diabetes? Do you feel like everything is different? Do you feel like your life is completely restructured? Do you remember sometimes that you didn't always have to do this stuff?" I had to exercise restraint and keep myself from asking all the questions that were floating around in my head.
Diagnosed as a kid, this is just the way things have always been. Soccer games always started with a glucose check, bedtime always involves a glass of water and a bottle of juice, and now, each skirt hopefully comes with a small, conveniently placed pocket. For people who were diagnosed as adults, I can't imagine how their lives have changed. Some people will say that being diagnosed as a kid is easier because you grow up with this disease and it becomes your "normal" without much effort. Others say that an adult diagnosis is easier because you have decades without the disease, thus maybe lowering changes of complications. From my perspective, I can't even wrap my head around an adult diagnosis. I only know what I know. But I am always eager to learn from others.
We sat at dinner long past when the chairs were put up at the other tables and past when the waitstaff was sitting, watching the football game at the bar. We compared pumps, weighed out the pros and cons of different CGM systems, and when a quiet beep sounded, we all looked quizzically to see which one of us had "gone off." The diabetes bond was enough to bring us to the table, but it was the company of kind people and easy conversation that kept us there.
On my post about marking my 22nd year with type 1 diabetes, someone named Tom tried to leave this comment:
"Hi Kerri,
I stumbled across your blog and as I was reading it I wondered if you ever read a book by Dr. Robert Young called "The PH Miracle for Diabetes". He is a nutritionist and microbiologist who has been able to reverse Type 1 and Type 2 diabetes in many patients.
I remember reading somewhere that he did a couple of clinical studies where 85% of type 1 diabetics and 94% of type 2 diabetics had complete reversals of symptoms and were off of their medications. I could be wrong on the exact percentage but it was in that range.
Anyways, I just thought I'd pass that on to you. I enjoyed reading your post and hope this tip benefits you.
Tom"
My furious response:
"Dear Tom,
Thank you for visiting my diabetes blog, and for your comment about Dr. Robert Young's ability to cure type 1 diabetes. I looked at your site and the informational download I can purchase for $27.00.
I must admit, I am both offended by your audacity and disappointed in your callousness. I have been a type 1 diabetic for 22 years and have worked very hard to remain healthy. For you to come to my website and try and sell me and my readers a "miracle cure" is an action you should be ashamed of. I'm disappointed that you thought so little of me as to insult me by sending this link to me, and that you think so little of these parents who are battling to keep their children healthy every day.
I wish you all the best, and I hope you and your conscience are reunited soon.
Best,
Kerri."
The website he linked in his comment profile was: http://www.vibranthealthunleashed.com
His email is: info@vibranthealthunleashed.com
If you are as offended by his spam as I was, feel free to drop "Tom" a line and let him know that people with diabetes do not want his $27.00 snake oil. We want real research. We want real progress. We want a cure.
"I'll just stand here and keep you company." He crossed his arms over his chest and kept his eyes on the red bowl I was stirring.
"Chris, you aren't keeping me company. You're lurking." The butter and the sugar were starting to mix up in the bowl, giving off that sweet aroma of cookies-to-be.
He smiled.
"I love cookie dough!"
I'm not much of a cook, but I can definitely bake. Flourless chocolate cake. Banana bread that's made with extra bananas so it's all moist and decadent. I can make chocolate crinkle cookies and Hershey kiss cookies, chocolate chip with oatmeal, peanut butter cookies ... you name it. And last night, at the begging of my husband, I made chocolate chip cookies with extra chocolate chips.
It's almost Murphy's Law, my cooking talents unable to be used for "good." I can't cook up a turkey dinner, or make a delicious dinner, but I can create the most sinful desserts without effort. And the irony of standing there with my insulin pump clipped to my hip as I mixed up a bowl of brown sugar, chocolate chips, white flour, and butter was enough to make me laugh.
I've become decent with the willpower bit, able to say "no thanks" to indulgences if I have my head on straight, but sometimes I completely buckle and make stupid decisions. I caved to the temptation of cookies last night. They were fresh from the oven and sitting on the cooling rack, making the whole house smell ... simply: awesome.
And Chris and I settled in to watch Vantage Point (mini-review: decent enough of a movie, but I could have done with the rewind device every fifteen minutes or so), I grabbed three cookies for Chris. And then I grabbed three for myself. My willpower went pfffft. And the cookies tasted delicious.
Indulgences, for me, make me fear the highs. I'm not as concerned with the calories or the effects on my weight (maybe I should be), but I try and ward off any post-indulgence highs anyway that I can. Usually, I bolus aggressively, and sometimes hit the mark perfectly. Other times I end up chasing a low, making the indulgence go from "reasonable" to downright gluttonous. Last night I managed to do both. Those three (delicious) cookies sent me up to 204 mg/dl, then I hit 54 mg/dl about an hour later.
But was it worth it?
I hadn't had cookies fresh from the oven in years. Can't even remember the last time. And these cookies were moist, hot, freshly baked, delicious, just the right amount of chocolate chips, and delicious. So yeah, I'd say that little blip in my willpower radar was okay. One cookie won't kill me. Neither will three.
But Chris, eating spoonful after spoonful of raw cookie dough? I think that may be more of a problem. ;)
(That title's for you, CALPumper!)
I need a break. :) Here's The Friday Six, because if I had to string more than three sentences together, my brain would turn to ice cream cake.
1. I'm looking forward to the fourth (had to edit - there have been three already and my brain went to mush on this fact) Fairfield County dinner on Monday, September 15th. So far, there are about seven people coming and I'm excited to meet everyone. If you live in the Fairfield County area and I missed your email, drop me a line at kerri (at) sixuntilme (dot) com and I can send you the specifics.
2. Also, the first winners of the TuDiabetes "Word In Your Hand" project are up, and they are remarkable. (My personal favorite is the "secret" one ... very cool photo.) If you want to get involved and submit your photo, check out the details on TuDiabetes, and say hi to Manny and Landileigh!
3. And I'm proud to say that Blogabetes turns one year old this month. I've had the pleasure of working with Carey, Nicole, Julia, Lindsey, SuperG, Rebecca, Michelle, Kim, Andy, and Scott over the last twelve months, and I am always impressed and inspired by their writing. If you haven't visited dLife to spin through their posts, you're really missing out.
4. In news I'm confused about, I've received several emails from companies asking to make me "part of their blogging team" by adding my posts to their RSS feed. I don't mean to sound daft, but is that a good thing? I know plenty of other bloggers have been approached by these kinds of companies and I'm still on the fence about whether or not that's a good thing, since I've also heard that Google penalizes you if you reproduce blog content across the wilds of the Internet. For my fellow bloggers - how are you guys handling these requests? Do you let them add your feed? I am unsure how to handle these requests and I don't know enough about Google to guess if this is a good idea or not. Help! I need brain power from the blogosphere.
5. dLife has been subjecting me to cute overload this week, starting first with some of dLife's finest teeny dogs and culminating with a crate full of newborn baby chicks. My co-worker has chicken business (I know) and he brought in a dozen baby chicks for the morning, so we could all coo and chuckle over them. They are so damn cute. I stumbled upon my co-worker, diligently answering emails with a baby chick in his pocket. I love my office. It's productive, yet eccentric. I dig that.
6. And thanks for your uplifting messages yesterday. You guys, with a little help from Fudgy the Whale, made a bit of a dreary day much brighter for me, and I really appreciate it. I know I've said it before, but this community is one of the best things to happen to diabetics since ... well, insulin, and you all make this journey a little easier. So thank you. And go get an ice cream cake, because damn that makes everything better.
Unfortunately, no time to vlog this week. But next week, I will definitely think of something worth waxing on about and will fill your computer speakers with nonsense once again. Until then, have a great weekend and I'll bother you on Monday. :)
I forget sometimes that Chris reads my blog. But he does, and he takes care of me. Today, we celebrated 22 healthy years with type 1 diabetes with this:
I was diagnosed with diabetes twenty-two years ago today. I don't have anything to say other than it's another year and I don't have that feeling of "accomplishment."
Instead, I feel a little beaten down by a rotten A1c, my body is sore from my attempts at rotating infusion sites (the one I put in last night was risky - very high on my back and it hurts like a bitch but the absorption is good so far), and I'm trying really hard to control my blood sugars.
There are days when I feel great and like I'm almost unaffected by this. Other days are tough, and it gets inside my heart. My blood sugar right now is 99 mg/dl. I feel strong and I look healthy, I think. I feel like people don't understand what this disease requires sometimes because it's so "invisible." But I don't feel like marking this day. I don't want to acknowledge it. I don't remember "before" and I try really hard sometimes, forcing my mind to go back so many years and I comb for a memory that was before my diagnosis. I can't find a single one. And I think forward to my future and about starting a family and going on trips and all the life I have ahead of me and I comb through this future for some hope that these moments won't include diabetes, either. But they all will, for as far out as I can see.
I know we have to keep working towards good health - all of us. And I'll continue to do that. But it can get very tiring, and today I'm not feeling very upbeat. I may need to get this. Just thinking about it makes me laugh. And laughter, diabetic or not, helps heal everything.
I've said it before, but I must say it again: my co-workers are a rare breed. They are funny, brilliant, and they actually care about making a difference in the lives of people with diabetes. Another co-worker took the Diabetes For The Day challenge, and wrote about what it was like to test all day and wear the newest version of the "faux pump." (This one was a definite upgrade from the Kool-aid box of yester-post. We used a Freestyle flash meter as "the pump" and taped an infusion set, sans needle, to the back of it.) Here's her take on a day with diabetes.
Kerri: You wore a “pump” and tested your blood sugar throughout your day with diabetes. How did you feel about these devices?
Co-Worker: At first I thought it was kind of fun to know what my blood sugar was, but after maybe the second prick, the novelty wore off. It hurt and seeing my numbers go up and down freaked me out. The pump was a huge pain. At work it wasn’t embarrassing but outside of the office, I felt like everyone saw it and wondered about me.
Kerri: You wore the pump all day and overnight. Was it comfortable? How was sleeping with something attached? Showering? Was it difficult to dress for? Did you almost drop it into the toilet at any point? ;)
CW: It was relatively comfortable, comfortable enough that I would forget about it until I caught the tube on something and felt the yank on my “infusion point”. I was nervous about sleeping with it since I don’t own pajama bottoms with pockets but I was able to tuck it under my pillow. I slept fine but woke up with the pump halfway across the bed. I wore pants with pockets the day I had my pump so I didn’t have to worry about where I would stick it. However, I wear a lot of dresses and I could see that being a big pain. I didn’t drop it in the toilet but only because I was paranoid that I would.
Kerri: Did physical evidence of diabetes (i.e. wearing the pump) make you feel self-conscious?
CW: At work, I felt normal, even proud of what I was doing. However, the second I left, I felt awkward, especially when a friend nearly pulled it out and I had to explain what it was and what I was doing.
Kerri: How did testing your blood sugar affect the way you thought about food?
CW: It made me aware of how many carbs I eat and that it is probably contributing to the fact that my blood sugar was all over the place. It also made me less likely to snack because I wanted to avoid testing. I remember thinking, "A piece of candy is already in my mouth before I think about testing. Did I just mess up? Man, this is annoying. Diabetes sucks."
Kerri: Did you find the blood sugar testing to be painful? How comfortable were you with the process?
CW: After the first or second time, I started to really wince every time I had to test. The sharp pain only lasts a moment but it made my fingers sensitive and bruised. I felt pretty comfortable with the process because I’ve tested before and I’m not afraid of blood or needles.
Kerri: How did the blood glucose numbers make you feel? Did any of your results make you raise an eyebrow?
CW: My blood glucose numbers made me feel anxious. I was like a roller coaster, relatively high and then a few hours later, relatively low. If I hadn’t had Kerri around to reassure me, I would have freaked out. After a bagel with cream cheese and an iced coffee with Splenda, two hours later I was at 141. I panicked. 141, that’s bad! (Right, except you have a pancreas, give it a second woman). Kerri assured me that I was fine.
(Editor's note: Her blood sugars hit highs of 140 mg/dl after a high carb lunch. So "high" by her standards was a little different than my highs.)
Kerri: Do you feel as though you have a better idea of what life with diabetes is like? What else would you want to know? What are you grateful for not knowing?
CW: I still don’t think I have a clue what it must be like. I did it for one day. I didn’t change my diet, I didn’t have to take action when my numbers went out of their normal range. I can’t imagine having to test every day. Given that experience, I would rather not know any more.
Kerri: Did this experiment make you appreciate your health any more? Less?
CW: It made me appreciate my health tremendously. That my body functions and regulates things on its own is a blessing most people don’t take notice of.
Kerri: Do you think other people who are close to diabetes, but aren’t diabetic themselves, should spend a day as a diabetic?
CW: I think everyone should.
Kerri: Anything else you want to add?
CW: Kerri is pretty awesome. (Editor's note: YAY!) And diabetes sucks. (Editor again: Word.)
During my lunch break yesterday, I dropped by the local Ann Taylor store to poke around in their sale rack. An older woman, maybe about 55 years old, approached me and asked if I needed a dressing room started.
"No, I'm all set, thanks. I'm on lunch, so this is just a quick visit."
"Oh! You work in the area? I've seen you in here before."
"Yes, I work at dLife."
She pursed her lips. "dLife? What's that?"
"It's a diabetes media company. We have a website? And a show on CNBC about diabetes management." I ran my fingertips down the seam of a black dressy top that I loved.
"Diabetes. Oh, the sugar! I have that. I have diabetes and my doctor told me to try and lose weight."
"That's good! You're taking the right steps." I moved away a little bit, perusing another sale rack. She followed me.
"You know, I see all these fat little kids at the high school when I drop my daughter off. I see them and I can't help but think that they are all going to get diabetes. Like me. They'll end up taking shots and losing their eyesight, you know. Diabetes is a very serious disease."
I smiled at her. "Diabetes is a very serious disease. But diabetes isn't always caused by being overweight. There are different types of diabetes."
"I know. The kind I have? It's because of being overweight. My ex-husband told me that." She adjusted her glasses. "But I want to lose the weight so I don't end up taking shots. Did you know that some people have to wear a machine all day long that gives them their shot? My goodness. Those people must be sick as can be. No ma'am, I don't want that to be me. I take my pills. I'm not going to end up like those people."
I was on my lunch break. I didn't want to get into a big diabetes discussion while I was shopping. But I couldn't let this lady ramble on, thinking diabetes was her fault and also thinking that pump wearers are on their death bed.
"Well, diabetes isn't your fault. It's a disease, not a guilt trip. But it's good that you're taking your pills and trying to lose weight. That's a step in the right direction. I also have diabetes - type 1 - and I wear one of those machines that gives me insulin all day long." I smiled again, trying to show her that I wasn't dying.
"Oh my. How long do you have?"
"Excuse me?"
"How many years?"
(Is she seriously asking me this?)
"Left? Ma'am, I'm not dying. This machine doesn't mean I'm dying. It's just another method of insulin delivery. So instead of shots, I wear this pump. It's okay. I'm in good health. I've been diabetic almost 22 years. It's complicated, but it's not my fault. Diabetes brings enough to the table - we don't need guilt, too."
"Well, I don't want to wear that thing." She gestured quickly towards my pocket, where my pump was clipped. "I'll just keep taking my pills. I don't want my diabetes turning into what you have. No offense, sweetie. You look very healthy, and I never expected you to have it, too. And I never expected yours to be that bad." She smiled sweetly, making her remarks sound even more ignorant.
I'm all about educating people and raising awareness. But sometimes I'm not up for the challenge. I wanted to buy a pretty shirt, go to the bank, and then go back to work. I didn't have the patience to be tolerant that afternoon.
"That's great, ma'am. I wish you and your health all the best. And just so you know, I don't want to wear this pump, either. But it keeps me healthy. And I want to be healthy. Have a good one."
Turned on my heel. She was still talking, something about "We're having a sale on suits, did you know that ..."
Lady, if I have just one day left or a million years in my future, I don't want to spend another minute of it talking with you.
My insurance company still says NO to my request for approval of a continuous glucose monitoring system. But - a ha! - a study conducted by the JDRF has given me something to print out and mail along with my third appeal. Thanks to several dozen emails this morning directing me to the study and special thanks to Cynthia Rice, Director of New Technology Access in Washington, DC, I now have the inside scoop on why insurance companies should listen up and listen good:
Kerri: This study quantifies the value of a continuous glucose monitoring device for people with type 1 diabetes, in particular, for adults aged 25 and over. How did individuals over the age of 25 fare using this device?
Cynthia: The study found patients with type 1 diabetes who used continuous glucose monitoring (CGM) devices to help manage their disease experienced significant improvements in blood sugar control. Overall, adults 25 and over lowered their A1c by .53%; were more likely to lower their A1c by 10%; and were more likely to reach target below 7.0.
Kerri: In regards to the younger group, the kids under 15, how were their results similar or different?
Cynthia: Children under age 15 using CGM were more likely to lower their HbA1c by at least 10% and achieve HbA1c levels below 7% compared with non-CGM users. At the same time, the average decrease in HbA1c was not significantly different in the CGM and non-CGM groups. Although the study was not specifically designed to assess the effect of frequency of CGM use on A1c, an initial analysis of the data suggests that patients under 15 who used CGM at least six days a week or more lowered their A1cs just as much as adults. On average, only 50% of children under 15 who used CGM used it six days a week or more.
Kerri: What is the assumption about the 15 - 24 age group? Why didn't the use of a CGM make a bigger impact on their A1c values?
Cynthia: Fifteen to twenty-four-year-old CGM users as a group did not experience significant improvements in glucose control compared with the control group. Although it’s clear from a preliminary analysis of the data that teenagers were the least likely group to wear the CGM near daily (30%), the study was not geared to answer this question -- however, many families with teenagers will not be terribly surprised with the result.
Kerri: At a session at CWD in Orlando this year, Bruce Buckingham discussed how CGMs work best for people who wear them at least six days a week. Your study appeared to confirm this statement, at least for the 25 and older group. How does duration of use affect results?
Cynthia: In the study, CGM use varied with age, averaging at least six days a week over the course of the trial in 83% of the patients 25 years and older, but dropping off to 30% of the 15 to 24 year olds and 50% of the 8 to 14 year olds. Although the study was not specifically designed to assess the effect of frequency of CGM use on HbA1c, an analysis presented this week at a scientific conference suggested that patients within all three age groups, including teens and young adults, who used the device at least six days a week had substantially lower HbA1c levels after six months compared with patients who used CGM less than six days a week.
Kerri: Many people with diabetes are fighting with their insurance companies to get their CGM systems approved. How can this study help move patients towards approval?
Cynthia: By showing that CGM use improves glucose control, this study, published in the prestigious, peer-reviewed New England Journal of Medicine, gives justification for expanded health plan coverage of CGM. JDRF will be briefing health plans on these results and encouraging people with type 1 diabetes and their loved ones advocate to their own health plans to cover CGM. You can help secure coverage for CGM by clicking here.
Kerri: And lastly, how can we, as the diabetes community, get more involved and help move research forward?
Cynthia: When you click on this link, you can not only help secure coverage for CGM, but sign up to receive emails from JDRF on how you can advocate for federal research funding and get involved in your local community to help move research forward.
Thanks for your time, Cynthia! And for more information on CGM insurance coverage, you can visit the JDRF website, sign the CGM Anti-Denial Petition, and check for more CGM updates here on SUM.
We know we have a special language - it's been confirmed in several editions of dTOES - and almost all of us in this community recognize the different terms.
But sometimes, those terms drop from the mouths of our friends, and the sound always amazes me.
Like yesterday morning, I was having a marathon phone conversation with Batman, and she mentioned that she told one of her co-workers about me having diabetes. "I was like, yeah, Kerri is a type 1 and she wears an insulin pump ..." and she kept talking but the phrase "a type 1" stuck in my head. Batman and I don't talk about diabetes much, but she's one of my closest friends and this language has become part of her vernacular almost by osmosis.
It's my diabetes and my disease to manage, but my closest friends and family members are so tuned in to it that they don't even notice anymore. Needles in my purse are par for the course. Looking at me and casually mentioning, "Ker, your wire is out," happens all the time. "Whoa, that'll empty out a pump," after seeing a huge dessert delivered to a table. Smooshed granola bars and stashes of juice boxes have found their way into everyone's glove compartments, and I'm not even sure they realize it. Numbers like 98 and 112 become amusing - "Hey, that's like a perfect blood sugar!" - and people's mentions of "juvenile diabetes" are quickly corrected as "Yeah, they used to call it that but now it's type 1 diabetes."
"Oh my gosh, that looks delicious You think like 40 grams of carbs?"
"Dude, let's go in the water. Throw your pump in the cooler!"
"We've got everything we need for the hike: water bottle, sunscreen, and sunscreen."
They "get it," but the best part is that they don't realize how much they've "gotten it." Their level of understanding is so intrinsic and instinctive that they barely notice.
I rely on these people so much. My meter gives me blood sugar results and my pump delivers life-sustaining insulin, but my emotional health is nurtured and cared for by my outstanding support team. It blows my mind to think about how many people are really needed to keep me healthy. My endocrinolgist and my primary care physician monitior my physiological progress and keep me steeped in information. My ob/gyn keeps tabs on my reproductive system and helps me prepare my body for baby. My retinologist watches out for those pesky eye issues.
But there's so much more than just the doctors with initials after their names. There's my mom and dad remind me that regardless of how old I become, I'm still their daughter and still their worry. My brother and sister, who know how to support without smothering. My close friends, who make sure my life is as free as theirs, but just in case, they keep juice at the ready. And my husband, who loves me in sickness and in health, not letting diabetes define our relationship - or us.
"Oh, the food's here. Time to shoot up."
That's a phrase only a diabetic, or a person who cares for a diabetic, would understand.
I'm coming up fast on my 22nd anniversary with diabetes, and one of the things I've had as part of my management arsenal is Kitty. Kitty was the stuffed animal cat that my parents bought for me before I went in for my 12 day hospital stay after diagnosis. Kitty used to have fur, and visible eyes, and other cat parts, but he's since been matted and hugged into this almost unrecognizable blog.
Kitty turns 22 next week, and it's amazing to realize that diabetes has been in my life for that long.
Do you have any diabetes benchmarks hiding in your linen closet, or under your bed, or in your memory? Share them!
I go through spurts of paying rapt attention to diabetes-related things. I'll monitor and log numbers like my next heartbeat depends on it. I'll count those blasted carbs and bolus accordingly. My days start to lose their life focus and my hours begin to revolve around diabetes. For the first part of these obsessive periods, my numbers are tightly controlled. But after too many days of laser-focus, the burnout sets in and things go haywire. Over-correcting highs (i.e. Testing at 10 am to see 240, correcting with two units of Humalog, testing again at 11 am and seeing 220, correcting again ... you see where this is going, right? Straight to a blood sugar of 52 mg/dl at high noon.), chasing lows, feeling vlah.
Then there are the spurts when I do not give what even remotely resembles a care. It's not like I'm blowing off diabetes care, but I just do it without overthinking it and then move the heck on. This is the phase I'm in these days, and it's been going on for about two weeks. I'm wearing my pump, checking my blood sugar, eating 85% healthy (too much coffee, indulging in ice cream, and upping the carb intake a little bit more than usual), and exercising very regularly. But I'm not going crazy trying to control all the variables.
Why, oh why, Diabetes, do you behave yourself only after I've gone through all your emotional hoops? Why don't you comply when I'm diligently logging and checking out all the hardware issues? When I'm pouring my heart into your management? Why is it that you are completely in line when I'm climbing up the side of a mountain, not giving a crap what my blood sugar is? Why is it that once I stop fussing, you start behaving? I'm not going out of my way to attend its needs, and now is when it complies.
Diabetes is like a bad little toddler. It's grumpy and needy and pinches my arm when I walk by. It's moody and constantly needs to be changed. It wants to play in the dirt but it doesn't want to wipe its feet before it comes inside, and it leaves crumbs from its snacks all over the damn place. It whines, cries, and hollers in my ears but when I give it what it wants, it throws it against the wall with a smack.
I will be a good mother to my actual children, but I'm going to toss Diabetes back into the playpen for a few more hours and let it scream its head off.
Maine was awesome. Despite the crazy long drive (6 hours from Providence, where we left from on Saturday morning), Acadia National Park was gorgeous and Bar Harbor was the perfect little seaside town to explore.
On Sunday morning, we woke up at 4:33 (Larry Bird) in the morning and drove up Cadillac Mountain to see the sunrise. According to the geniuses at Wikipedia, Cadillac Mountain is the first place in North America that sees the sunrise. And we watched that sun come up, all right. We were exhausted, but it was truly beautiful.
After watching the sun rise, we ventured down to Bar Harbor to rustle up some breakfast. Since it was well before seven in the morning, we had plenty of time to kill. The views of the actual harbor were so beautiful that we snapped a pile of pictures.
The breakfast place we found was AWESOME - 2 Cats Inn and Restaurant. Among the very first patrons that day, we enjoyed an excellent organic breakfast (which included a biscuit with strawberry-flavored butter - so, so awesome) and woke up slowly. I'd recommend this breakfast joint to anyone. The service was a little slow, but the food was among the best I've ever had. And there was a cat sauntering through the dining room, which I thought was cool. Against health codes? Sure. But I don't care.
In Acadia National Park, we drove the Park Loop and tried to see as many parts of the park as we could. We visited Thunder Hole twice, but the tides were never high enough to experience the full effects of the promised "Thunder." We had to bring our own waves. (HA - the puns never stop!)
The hiking trails were great, too, and my blood sugars seemed to enjoy working out in a different environment. We did the 3.3 mile loop around Jordan Pond (and yes, we had popovers at the Jordan Pond Tea House) and later in the day, we climbed up Gorham Mountain. The views were incredible, and being the only people on the mountain at that time of day made us feel like we were real explorers (nevermind the cairns placed on the mountain). We reached the summit after a hard 0.9 mile hike up.
Even camping out was decent - we devoured s'mores (after taking a full hour to make a damn fire) and slept in our tent. The dirt and I made our peace with one another. And we have a whole slew of photos on Flickr, if you want to see more of the scenery.
The Internet is intruiging. Work is comfortable. And checking out what different cities have to offer is fun. But being out there in the woods and seeing what nature has to offer - that's a whole different kind of existance.
Maine was gorgeous. We took a ton of pictures, ate at some very ecclectic little places in Bar Harbor, watched the sun rise from Cadillac Mountain, and hiked all over the place in Acadia National Park.
And then we drove.
Oh how we drove, for hours, to get back to RI for the night.
All this travel has caused a wild case of exhaustion and, thanks to a few appointments in Boston tomorrow, no time for blogging. I'll be back tomorrow night with a real post, but for now I need to catch up on some sleep. In the meantime, here's something that made me laugh out loud:
