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March 21, 2013

Guest Post: Diabetes Scholars Foundation.

Patients connecting with patients, embracing that psychosocial support, is something I feel so strongly about, and Friends for Life is a conference that hits the mark for me on all of those levels.  Today, my friend, PWD, and fellow FFL faculty member, Natalie Bellini is guest posting about the Diabetes Scholars Foundation, and the opportunity to apply for a scholarship to attend FFL this summer. 

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The lovely NatalieThis year, July 9-14, more than 3,500 people affected by T1D will descend on Disney’s Coronado Springs to meet new people and learn to thrive with T1D at Friends for Life annual conference.

For families, this is different than anything you have ever attended; it is not a drop-off camp for your child, it’s a take the plunge with the child/teen with T1D, siblings and parents.  Children and teens go to their own sessions while parents do the same.  There is a nurse educator in all kids’ sessions, glucose and water stands in every room and people watching out for the ‘green bracelets,’ what every person with diabetes wears for the conference.  The 2013 schedule is already available as plans for this year’s conference started more than 24 months ago.
 
Interested in research? There is a track for you!  Need emotional support? There is a track for you! Grandparent? They are welcome!  Mom? Dad? Step? Significant other? Spouse? Everyone who is affected by T1D is welcome.
 
Teens?  Teens are offered time to learn as well as a day at a Disney park to practice what they have learned away from parents, but with a healthcare team there for support.  They meet adults and other teens with T1 that are accomplishing great and small with T1 and are challenged to do so as well.  Parents can feel safe letting the teens be together and look out for each other.  One participant told the staff after the first year of attendance that she barely saw her teen, but that when she did he was grinning ear to ear.  

For young adults there is a separate track to discuss transitioning to college, insurance coverage, new technologies to treating diabetes, stress and so much more.  There is social time in the evenings to meet others and gain insight into how other young adults are managing T1 in the real world. They are paired with another young adult so they can check on each other at night and be a support to each other.

Adults with T1?  Kerri Sparling and Scott Johnson lead the ever-growing group of adults in sessions including pregnancy and T1D, using social media, current research, spouse and significant other support and camaraderie.  As a person with T1 who is a CDE AND has a husband with T1, we both feel a comfort when we walk in the door and are surrounded by so many others living, thriving and struggling. We discuss successes, mistakes, ‘bad’ lows coupled with too many Oreos and laugh and cry together.

What would make this better?  What about every single food served is carbohydrate counted for you? What about a separate buffet at meals for people with celiac?  What about screening for retinopathy without dilation with the latest cameras in the US by the BEST team I have ever met as a nurse? Or screening for celiac?  Or TrialNet? What about meeting the makers of insulin pumps, meters, insulin, glucose, pump accessories and others?  JDRF?  ADA?  DRI? Everyone is there ready and willing to talk to you and yours and answer your questions in a fun and relaxed atmosphere.

There are sessions for everyone led by the top researchers, psychologists, physicians and certified diabetes educators. Take a look at the faculty list.

Unfortunately due to economic situations, some families, young adults and adults will never have the ability to attend Friends for Life and participate in this very unique experience.  The Diabetes Scholars Foundation is committed to changing this by providing conference scholarships to families, young adults and adults in need. 

For families, young adults and adults dealing with economic hardship as well as a life threatening illness, the conference has both an immediate and long term impact on them.   Comments from past recipients have been “this was life changing” and “we feel like we are part of a new family”.  To date, over 300 families have been provided the opportunity to attend a diabetes education conference.  Please consider applying for a scholarship at Diabetes Scholars Foundation (DSF) soon as the deadline is April 15th.  

Finally, if you are inspired to help more families and adults come in future years, DSF has a fundraiser Saturday, July 13th right at the Coronado.  They are looking for sponsors, donations and attendees alike.  

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Natalie Bellini, RN, CDE, has had Type 1 diabetes since she was a young child. Within a year of finishing nursing school, she started to care for people with diabetes, focusing first on diabetes in pregnancy then pediatrics and insulin requiring adults. She has spoken nationally and internationally as an expert in both working with teens and their parents with diabetes as well as infusion set choice, usage and maintenance. Her fundamental goal when developing the teenage curriculum for Children with Diabetes conferences is that each and every teen that attends finds a passion in life and pursues it. In 2010, she was a fundamental part in developing and testing the theory of using liraglutide with T1.  She is currently attending Drexel University part time in order to become a Family Nurse Practitioner. Currently, Natalie is a senior territory manager with Animas Corporation.

March 12, 2013

Guest Post: Rome If You Want To.

(Sorry about the title on this one, but it's the first that popped into my head and I couldn't shake it.  A little B-52s action never hurt anyone this early in the morning ... not even Love Shack.)

Today's post comes from an American living in Rome, and the challenges of taking a US-based PWD and throwing them into the land of pastries and pastas.  Jasmine, diagnosed with type 1 diabetes at the age of 26, has been living in Rome for the last 18 months, and she's sharing what life, and diabetes, is like across the pond.

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Living in a foreign country is not for the faint of heart.  The language barrier, the cultural differences, and the logistics of planning an international move are just  a few of the issues we faced when my husband, Nick, and I decided to take the plunge, uproot our American way of life, and move to Rome, Italy for two years.  I received a fellowship to finish my dissertation, and since Nick is perhaps the most go-for-it person I know, off we went!

But what springs to mind when you think about Italy?  The Colosseum?  The canals of Venice?  Or is it pizza, pasta, and gelato?  Tiramisu?  Cannolis?  It’s the carbohydrate capital of the world.

As you can imagine, one of the first things that topped my list of worries when planning our move was diabetes.  Could I stay on my insulin pump and CGM?  How would I get test strips?  Do people in Italy even have diabetes??

Of course they do, and looking back now, two years later, a lot of my concerns were really silly.  But, I was still fairly new to this life with diabetes and I knew how tough things could be when I actually understand the language perfectly.
Jasmine and her husband in Capri.

My life with diabetes in Italy looks very different than the American version.  Back in the States, I had really great health insurance, a supportive medical team, and some of the best technology on hand.  None of that is true now.  In preparation for our move, I started hoarding supplies, wearing sensors and infusion sets longer than is recommended (don’t tell the FDA…), and even buying insulin pens and needle tips out of pocket.  I knew that getting into the Italian health care system would be possible, but I had no idea how long it would take.  My hoarding habits turned out to be the right move since I only *just* got all of that figured out.

I’ve now been without my insulin pump and CGM for almost a year.  I miss them and the pseudo-normal life they gave me desperately.  As much as I dislike MDI and flying blind with my blood glucose levels, I’m making it work.   I eat pizza, pasta, and gelato, but it takes some planning, and that’s really no different than anyone else living with diabetes.

Some of the simplest things that an American PWD is used to don’t even exist here.  For example, they don’t sell any form of pure glucose in Italy, at least that I’ve been able to find, and my diabetes doctor here didn’t recognize my American imports.  Same goes for alcohol swabs.  I finally found them at one pharmacy, but it really took some work and asking a lot of questions in my not-so-great Italian.  And if there is a question about a prescription, the pharmacist doesn’t just call the doctor.  You’re on your own to resolve it.

I recently realized, having just passed my third diaversary and having lived in Rome for 18 months now, I’ve spent half of my life with diabetes in Italy and half in the US.   The changes haven’t been easy, but I also know it could be so much worse.  And in the end, being back on MDI and dealing with the challenges of the Carbohydrate Capital has been worth the incredible experiences we’ve had living abroad.  But it definitely helps to know that we’ll be back home soon.
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Jasmine was diagnosed with Type I Diabetes at the age of 26 on February 4, 2010.  She grew up in Missouri, has her American residence in Philadelphia, and currently lives in Rome, Italy with her husband and two furry cat children.  She tries to have as much fun as possible - when not stressing out about her dissertation - by traveling, eating, and enjoying a glass of wine with her husband.  She blogs (sporadically) at Silver-Lined.

February 22, 2013

Guest Post: Brought Together by Baby Ruth.

I love this post, and the fact that candy bars can be used for good.  Today, Tracy Friend, a fellow person with diabetes who travels and brings along her diabetes goodies by the purse-full, shares a story today about the power of meeting another PWD in the wild, and the compassion found therein.

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Tracy's lovely head.We love to travel. And being a PWD, I am always excited when I see someone with that tell-tale tubing, another ‘borg’ like me. Like Kerri has posted before, there’s an instant connection – a shared organ or something like that that just draws me to these other unknown (but soon to be known) PWDs.

This Christmas break I took my boys to the Bureau of Engraving and Printing to see money being made. (It’s pretty cool, by the way!) We stood in line in the cold for a while before getting inside. Once inside we had to traverse the obligatory Federal building obstacle – the security scanner. I had left my purse in the car trunk, and only had my jacket on, but alas – I had more! Like Batman, who carries tools on his belt, I too had tools. An insulin pump and a CGMS. I left the CGMS in my pocket (I know, I know – but I like to see if it can get through undetected!) and pulled out my pump.

“I have an insulin pump.” I announced, holding it up. The security person paused for a moment, then looked around. Nearby another security person looked up, attentatively.

“That’s okay. I have one too. She’s fine.” Then he came over to say hello. As I tucked the tubing back into my pocket, he told me he had the same kind, an Animas Ping. I asked him what color he had. “Blue” Mine is pink. That’s okay. He’s a boy, I’m a girl. 

I then whipped out my secret tool. The one that had passed through undetected. (It’ll be a good tool for my belt arsenal!) The new Dexcom CGMS.

“Have you seen this?”

“No, I don’t have one of those yet.” Then he looked closer. My Dex was showing 78 mg/dL. (Cue dramatic music) “Hey, do you have some snacks with you?”

I had left my purse in the car. My trusty boy, who always has snacks, (that he regularly shares with his mom) was out of stock!

“No, I’ll be okay. The tour’s not very long,” I replied, acting more confident that I was.

Bonding over Baby Ruths“No, you need something. Hold on. I’ve got some.”  Then he went over and took a candy bar out of his bag.

“No, really, I’ll be okay.” I insisted.

“No, you’d better take a couple.” And so I did. I ate the Baby Ruths surreptitiously while we waited for our tour to start. It was a huge blessing. Within 5 minutes, while waiting for the tour, I was at a 67 mg/dL. (Apparently DC traffic was a little more stressful that I had imagined.)

The tour went very well and I look forward to going back, and seeing my friend again someday. I am so thankful for this wonderful man, his generosity, and the mechanical organ that we share that brought us and his Baby Ruths together.

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Sometimes, as people living with diabetes, we run into situations and people that are challenging and difficult.  But other times, we find kindred spirits and kindness the most unexpected moments.  Thanks for sharing this one, Tracy.

Her bio:  Tracy Friend is a mom first. Then a project manager, and an emergency management professional. She worries about a lot, but enjoys a lot too. Life is too short to worry too much! She was diagnosed with “the beast” a month prior to her 18th birthday. She looked upon it as a challenge – what things can I have – not not have!
 
Several countries, four kids, and an amazing husband later, she still has her quirky sense of humor about her. You can read her sometimes regular blog at The Virginian Times. You can also check out her latest adventure – app development at Don't Forget Your List!

January 24, 2013

Guest Post: Going Beyond 140 Characters.

I'm very honored to be hosting a guest post from Matt Cameron, who I met at the Australia Social Media Summit back in November.  Over several (read: six dozen) cups of excellent Melbourne coffee, I had a chance to chat with Matt and get to know this fellow over-caffeinated kindred spirit.  Today, he's writing about his new diabetes blog, Insulin Pumps Need Tetris.
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He wants Tetris on his pump.Hi, I’m Matt from Melbourne.

Long time blog reader, short time blog writer.

Before attending Australia’s first Diabetes Social Media Summit (#OzDSMS), organised by Renza and Kim at Diabetes Australia – Victoria I thought I had two things stopping me from writing a diabetes blog. The first factor being the lack of time, the second factor being the lack of a slightly humourous blog title.  Some might argue that I still have neither of these things in my favour, but following the event, I decided to launch my blog – Insulin Pumps Need Tetris – anyway.

This was a group of people that I had largely met via Twitter, brought together by the fact that we share diabetes and a passion for improving lives for people diabetes. These people have made me feel more inclined to tweet about my diabetes, and #OzDSMS made me realise that I can be a part of our great Australian Diabetes Online Community in a way that went beyond 140 characters. That is, by joining what is a growing blogosphere in Australia.

I have quite often been guilty at lamenting that people do not “understand” type 1, that the media misrepresents type 1 ALL THE TIME and that product companies often do not engage with people living with type 1 nearly enough, resulting in products that just miss the mark. Writing a blog allows me to go a step beyond lamenting these issues and doing something a bit more constructive.

So, why “Insulin pumps need Tetris”? Soon after getting my insulin pump earlier this year, a close friend soon asked me how I was going with my newly acquired gadget. My response?

“I have no idea why I didn’t get a pump sooner. The only thing that would make my insulin pump any cooler would be if it had Tetris on it. Insulin pumps need Tetris."

(You can read more about that here.)

In some ways, diabetes intersecting with the online world is not new to Australia. We have had the benefit of the Type 1 Diabetes Network* - Reality Check forum for a long time that provides people with a chance to discuss diabetes with friendly faces/usernames; anonymously if they wish.  But in another way, the Australian Diabetes Online Community is in its infancy here. Until recent years, the blog scene has been fairly sparse and until even more recently, the twitter scene has been fairly disconnected. But this is changing - big time.

The Australian Diabetes Online Community is going gangbusters. Take my story as a case study – started on Reality Check, started reading blogs (happy to note that SUM was one of the first I stumbled across), created a twitter account, found a whole diabetes community on twitter, started tweeting about diabetes (apologies for all the other sports tweets if you follow me!), met people from social media in real life... to talk about social media, coordinate social media activities for the Type 1 Diabetes Network and now created a blog of my own.

Simon and Matt

This is all because I now feel comfortable to put my thoughts about diabetes on paper (iPad technically) due to the supportive environment that the DOC and the OzDOC provides.

We are quite lucky in Australia. We have the National Diabetes Services Scheme, considerable health professional expertise, insulin pumps are increasingly accessible and there are numerous organisations supporting people with diabetes. But there are things that need attention and for the first time, social media is allowing us to influence and drive the agenda in a whole new way.

For example, Renza’s blog post on issues regarding driving and diabetes guidelines in Australia has resulting in mainstream media attention and political interest.

All of this was not even in the realm of possibility when I was first diagnosed in 1996. I am hoping that my blog can, in a small way, complement the work of my friends and colleagues in across the Australian Diabetes Online Community, and abroad.

Note 1: My sincere thanks go to Kerri for allowing me to provide a guest post on her super awesome blog. It was an absolute pleasure to meet Kerri during her time in my home state of Melbourne, and look forward to her return visit at some point (although I’m sure she’s not looking forward to the flight!).  [Editor's note:  Thank YOU, Matty, and I'm actually looking forward to coming to Australia again!]

Note 2:  I am a committee member of the Type 1 Diabetes Network but these thoughts are my own!

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Thank you so much, Matt, for introducing yourself, and for everything you do for the global diabetes community.  Oh, and thanks to Melbourne for having such fantastic coffee! And lastly, I wish Cat Tetris actually existed.

December 28, 2012

Guest Post: The One About the Pork Rinds.

Today, I'm hosting a guest post from Christopher Angell (he's a cover model now ... or at least his glucose tabs are) about the food choices we make in pursuit of a stellar CGM graph.  As someone who frequently skips an early morning meal in efforts to avoid a blood sugar spike, this post resonated for me quite a bit.  Take it, Chris!

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hey there, Chris!There's no question that for most of us our blood sugar is the center of our diabetic universe. And why not? That's the symptom that most readily defines our disease, and most concretely separates us from the non-diabetics of the world. It also most reliably (though not infallibly) predicts our likelihood of complications. So a zealous fixation on the numbers on our meters is understandable.

Sometimes, however, I get carried a little too far, and my focus on blood sugar obscures other important levers on my well being. I have to occasionally remind myself of two things that, while obvious to me as I write them, are also lost or overlooked more often than I realize in the moment. It's worth considering them and taking stock of how frequently they really affect my behavior.

    1.    Just because something helps my blood sugar does not mean that it's good for me.
    2.    Just because something doesn't affect my blood sugar does not mean that it doesn't affect me.

Some good examples of this:

  • The best looking lines on my Dexcom frequently occur on days when I skip lunch. Nice, flat, straight, goal-hugging lines, right through the work day. What's not to love? What's not to love is my diminished ability to focus in the afternoon, or my increased irritability and impatience in the hours (or minutes) between when I leave the office and get some dinner in my belly.
  • In my quest for salty crunchy snacks that don't send me spiking (the way pretzels and chips do) I started eating pork rinds while on a trip to Mexico (calling them “chicharrones” somehow made it seem far more acceptable). I can eat them all day without a blip on my Dexcom. That does NOT mean that it's OK to eat pork rinds all day long. Still, I have come close a time or two, just because I didn't have to bolus (and, say what you will, they are really, really tasty). I let the BG myth convince me that a bad decision was actually a good decision.
  • When my blood sugar is just a little bit low (below 80 but above 60 and not dropping) I can definitely eat a cookie and not go out of target. Sometimes I can have two cookies. But there are problems with cookies that go beyond what they do to my blood sugar. They affect my triglycerides/cholesterol. They affect my energy levels. They add mostly useless calories. They make me crave EVEN MORE cookies. None of these things are particularly desirable, even if my meter gives my cookie and me a tacit thumbs up.

There are plenty of other examples, and I'm sure you could all add examples from your own lives.

A big contributing factor is that so often decisions about blood sugar are made in moments of diminished mental clarity (when low, when busy) which is why taking stock of those decisions after the fact and planning for similar situations in the future can be a big help. I keep nutritious snacks (nuts mostly) at my desk, and, when I can, pack a bg-friendly lunch for the office. I micro-manage those sort-of-lows with glucose tablets. I try to force myself to be really honest about what sweets and treats I'm going to allow myself, and stick to that. I often fail. But living a great life with diabetes is a series of trials, failures, successes, and more trials.

It's through experimentation, driven by self awareness (whether that's awareness of numbers, or of behaviors like those described above) that we keep improving.

I want this, all the time.

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November 16, 2012

Guest Post: Air Travel, Diabetes, and Burritos.

TSA madness and a burning desire for a burrito?  Is this what diabetes travel woes are like?  Thanks to Christopher Angell's travel and diabetes guest post today, I'm feeling like a kindred spirit with this particular PWD and fellow travelin' fool.  (Not that he's a fool.  Or that I'm a fool.  You know what?  This time change thing is starting to make my brain splutter.)  Here are some travel tips from Mr. Angell.
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I find it slightly ironic that Kerri asked me to write about diabetes and air travel, since she's the one in Australia, and I'm the one sitting in my office. Still, so far this year, we've run into each other at devents in Orlando, Indianapolis, and Berlin. In fact, assuming my plans don't change (unlikely), I'll have flown 99,652 miles when the ball drops on December 31.

I have broken my air travel advice into four categories: Redundancy, Security, Nourishment, and Shameless Self Reliance.

Redundancy.
In travel, as in diabetes, surprise is the enemy. The more that things go according to plan, the better.  But plans always do change. This is why it's critical to always have a backup plan.

It goes without saying that you should always travel with duplicates of all of your supplies (including treatments for low blood sugar), if possible.  The one thing that I don't always travel with a backup of is my Dexcom CGM, because I don't always have a backup (sometimes I do if I order another after my warranty expires but my current receiver is still working) but I always travel with a backup charger.  It also goes without saying that you should keep the backup in a different location than the original.

Security.
Probably the most controversial (and in many ways personal) aspect of air travel is the TSA security checkpoint. What to scend through the x-ray? Should you request a pat-down?  Metal detectors vs. full-body scanner?

I know Kerri disagrees [Editor's note:  I do.], but I always just go thorough whatever machine they put in front of me.  I want to get away from that area as quickly as possible.  If you take that route, and wear a Dexcom (or other CGM), I suggest wearing your sensor somewhere easily accessible in case you go through a scanner and they want "more information."  This happened to me only 3 times (out of 50+ flights and counting) in 2012.  Twice in Denver and once at Laguardia.  Since I was wearing my sensor in my thigh, it meant that I had to go to a private screening room, as pulling down your pants in the middle of the terminal is still frowned upon.  I take it in stride - I would say 99.99% of the time, if you are polite and cooperative, you'll be treated with courtesy and respect. If not, file a complaint. There was a study released recently about the effects of airport x-ray machines on pumps and CGMs that's worth reading.  I've always sent mine through the machine and never had a problem, but I'd never thought it might be an issue before, so it wouldn't hurt to check your manufacturer's guidance.

I used to keep my insulin pens in a Frio case when I traveled, but I never do anymore, unless I know I'm going somewhere really hot, and will be exposed to that heat for a long time.  The pens provide a bit of protection, and even if it gets heated up, insulin only loses a small percentage of potency.  The space savings are well worth that gamble.  That said, my most amusing security run in happened when I had a freshly-plumped Frio case in my carry on:
Agent: "Sir, is this your bag?"
Me: "Yes"
Agent: "Do you have anything sharp or dangerous in it?"
Me: "A few syringes, but they have caps on them."
Agent: "Ok.  Umm…sir…do you have…do you have a burrito in your bag?"
Three things immediately popped into my head.
1. I was in San Diego.  Shouldn't they know what a burrito looks like?
2. Are we not allowed to bring burritos on planes anymore?
3. I really wanted a burrito.

Sustenance.
This brings me to one of the biggest challenges for me when flying: food.  If you're trying to follow a reasonably low-carb diet, you quickly become one with the grilled chicken caesar.  It's the most ubiquitous bread-less protein source out there, by a good mile, followed by the far-less-satisfying individually-wrapped slices of Tillamook cheese found in United's lounges.  My secret weapon?  Almonds.  I never fly without about a pound of raw almonds.  They're reasonably tasty, do not spoil, are very easy on the bg's, and have a lot of healthy stuff in them.  Should they be used as a meal replacement?  No.  Have I used them as a meal replacement?  More times than I can count.

Shameless Self-Reliance.
When you're on the road/on a plane/out of your normal zone, you're even more at your own mercy than normal. You can't hesitate or be squeamish/embarrassed to test, treat, or correct.    If you think you might be low, don't wait, get ahead of it. If you're high, knock it down, because you'll be sedentary. I am on MDIs and I give myself shots in my seat next to strangers in even the tiniest of aircraft. I figure the least sanitary place I could bolus would be in any travel-related restroom.

As an example of how important it is that you be prepared for whatever the road throws at you, I'll recount what happened on my flight from Indianapolis to DC after the AADE National Gathering.  About 10 minutes before we were scheduled to land in Dulles, I saw the flight attendant move nervously toward the back of the plane.  Then, the classic call over the PA "Is there a doctor on board?".  A few seconds later, someone yelled "Does anyone have any Glucagon?".  I offered glucose tablets, but I knew it must be past that point.  On this small plane of less than 100 people, there were three doctors and countless nurses/CDEs.  Seemingly the ideal flight to have a diabetic emergency.  But NO ONE had any glucagon, and the plane didn't have any either.  They ended up using the glucose drip bag from the plane's first aid kit.  There were ambulances waiting on the runway, and within a few minutes, the woman was carried off the plane, already regaining consciousness and no longer seizing. Still, this is not something you want to count on.

So there it is.  If you practice redundancy, have a plan for security, consider your sustenance, and flaunt a shameless self-reliance, you'll get to where you're going just fine.  I just can't promise the same for your luggage.

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For more from Chris, you can check out the Glucolift company blog, or just cut right to the chase and buy a jar of Cherry tabs from Glucolift's Amazon store.  Mmmm ... cherry.

November 15, 2012

Guest Post: Living the Paleo Lifestyle with Type 1 Diabetes.

Lindsay lives with type 1 diabetes and has guest blogged here before about her diagnosis.  But today she's talking about living the Paleo lifestyle while managing diabetes, and I find her journey fascinating.  I'm fortunate enough to call Lindsay (ahem ... I mean Linds!) a friend, and I encourage you to check out her blog or her Twitter feed for more information on how Paleo fits into her diabetes management.  She's pretty freaking awesome.

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When I first learned about the Paleo Lifestyle, I was intrigued, as I have become with food and the effects it has on the human body since my late in life diagnosis of type 1 diabetes. I was concerned that I wouldn’t be able to fully live the Paleo Lifestyle having type 1 diabetes. Type 1 requires fast acting sugar at a moment’s notice, careful planning of schedules and exercise, and the ability to be flexible constantly. Glucose tablets, smarties, and Skittles, are not Paleo. More so, kale and carrots don’t exactly raise my blood sugar quick, so I was skeptical.

What is the Paleo Lifestyle? Paleo stands for Paleolithic, also dubbed the "Caveman Diet," or the "Hunter/Gatherer" diet. In short, if it wasn't around when cavemen were, our bodies weren't meant to eat it and can't properly break it down. If you have to process, breakdown, refine the food from its original state, then it isn't Paleo. For me a good rule of thumb to go by is that if it wasn't around 100 years ago, don't eat it. Think about your grandparents or great grandparents, who lived on lard, meat, potatoes, chicken, bacon…they lived to be 70s, 80s and 90s, why? Because they walked out their front door and sourced their meal from the barn, coop, etc. Think about it.

The more research I conducted, books I read, blogs I followed, the more I thought, there really is something to this Paleo thing, because it just plain makes sense. I decided that I’d give it a go, and see how it fit into my life with type 1 diabetes. Disclaimer: I didn’t “go Paleo” to try to be low carb (because of my type 1 diabetes), I went Paleo to take control of my overall health and feel better, not just from a diabetes perspective. Paleo has reversed and cured a lot of individuals from a variety of chronic health issues, which is amazing, however, I never went Paleo thinking I would cure myself of type 1 diabetes and go off insulin, and I know that won’t happen. BUT, I feel better (and different), so many things have changed, disappeared, or have become manageable that I didn’t even realize were an issue. One of the most common misconceptions that I’m sure a lot of individuals with type 1 diabetes can relate to, is this “oh, that’s right, you can’t eat that,” FALSE. I choose NOT to eat that, but thanks for assuming you know me and my disease!

Over a year into living the Paleo Lifestyle, I’ve lost weight (and can easily maintain the loss), my skin is clear, I sleep better, I feel better and the most important benefit for me, I like who I am. It’s been a learning process, still is, but I’m extremely passionate about it. I started a blog to share with others what I learn, and to try to help others feel better too. I’ve tried to find ways to share how being Paleo is easy, flavorful, and rewarding. In all of the benefits I’ve seen, my blood sugar is amazing I’d say 90% of the time. Hard to believe, but I see it with my own eyes, so, yet another reason why Paleo has been wonderful for me. My body behaves entirely differently when I eat real food vs. fake food.


What’s more awesome about being Paleo, is that I don’t have cravings (well, sometimes, but RARE), never feel starved, and eat more than I ever have! Everyone has to find the Paleo that’s right for them. Each person’s Paleo is different, but it’s about learning about your body, how you’re feeling, and eating clean. My definition of eating clean, is knowing what I'm putting in my body through reading and educating myself, what ingredients are (if there are any), properly washing fruits and vegetables, buying organic when possible, and eating grassfed/pastured, hormone, antibiotic free meats. I try to eat as fresh of food as possible, nothing boxed or with an ingredient list. Eating food that our bodies were meant to eat and digest properly fuels us and we receive the most nourishment and benefit from what we're putting in our bodies as a result.

Let me dispel a couple myths for you:
  • I am not starving; people think because the list of foods I don't eat is much longer than the list of foods I do eat, that I'm always hungry. People also assume that I am dieting when I say no thank you to cake or bagels, when in reality; I choose not to put those foods in my body for health reasons, not because I'm dieting, OR because I have type 1 diabetes.
  • I am not deprived; I CHOOSE to live this way, and am happy with my choice, so I don't feel deprived. After removing wheat/grains from my diet altogether, my mental health is much more on point, and I can actually correlate not eating those things with a healthier feeling in my body. Wheat has the same effect as meth in your brain on dopamine receptors, so you're not exactly thinking clearly when you eat grains, which is why they’re so addictive.
  • I eat more than I ever have; I am always munching on fresh fruit, nuts, healthy meats, vegetables, etc. I feel like I'm always eating, and yet I don't gain weight. Realizing that the fewer the ingredients, the more flavorful the actual food is. My tastebuds have evolved with the removal of things like artificial sweeteners, refined sugars, grains, etc.
  • I feel better than I ever have; I sleep more soundly, so I'm more rested. My blood sugar is so consistent; the lack of fluctuation helps my focus and concentration. My skin has cleared tremendously. Living Paleo and exercising regularly, I feel healthy and lean. I've actually had several individuals tell me that I look healthy, and I'd much rather hear that than “you’re skinny.”
  • Living Paleo is easy and affordable; common misconception like with any diet or lifestyle that eating Paleo (or healthy) has to be expensive health foods, and that is not the case at all. There are a lot of posts on my blog about very simple recipes that can be made with very few ingredients that are Paleo. They’re all inexpensive. The next time you are making a recipe, try substituting a few key ingredients with more Paloe-friendly options, and then think about what else you could add for beneficial nutrients and minerals. Most of the time, I make something, then think, “oh that’d be good if I added that, and I have it on hand.”
Paleo, pretty much rocks my world. I love it. I’m passionate about it. I will help anyone that has questions about it, type 1 diabetes or not. I love cooking, but try to make things easy. I love experimenting. I love learning, and sharing what I learn. I started a blog, Living Like Linds, which includes posts about my journey to health among other things.

Here are some Paleo posts that might be helpful:
Here’s to improved health, beyond what I ever imagined ... and diabetes can suck it.

August 30, 2012

Guest Post: decAY1c.

Aside from his affinity for glucose tabs and wearing mustaches mounted on jaunty little sticks, Christopher Angell is also a former blogger.  He claims to have zero interest in reviving his old blog, but he was wiling to guest blog on SUM about the perils of dental apathy and his newly-minted term:  decAY1c.

*   *   *

Last week, for the first time in far longer than intended, I spent a few hours in the dentist's chair.  It was my first dental treatment in years, following an exam/consultation 10 days prior to establish what I was working with, mouth-wise.  Some highlights of that visit included:

"You do know that this tooth is cracked, right?"
"Wow, that other tooth was really bad, but this is definitely the worst."
"You know, you're really not supposed to wait this long to go to the dentist."

No, you're not.  Nobody is, but people with diabetes such as myself are particularly ill-advised to invite decay or surgery on themselves, oral or otherwise. Add to that my many middle-of-the-night hypos dispatched with glucose tabs (but not with an extra brushing) and my mouth was deep in the danger zone. This was confirmed by the 2-page laundry list of necessary procedures they sent me home with, including one extraction, two crowns, two rounds of scaling (whatever that is), and some other stuff, the shorthand for which I can't decode.

So how did it get so bad? In every other regard, I'm an acceptably responsible patient:  I have kept my A1c at or below 6 for well over a year. I get my full blood work done 3-4 times/year,  and my cholesterol is excellent. I had a full dilated eye exam this year.  I refill all of my prescriptions on schedule (and am a bit of an insulin/test strip hoarder, an artifact of spending the first 9 months of my diabetic life with no insurance coverage and buying my supplies on eBay). I have trained for and completed two running races this year with mileage in the double-digits. What makes me such a disaster in the dental arena?

The obvious answer would be that I hate going to the dentist, but that's just not the case.  I've never hated going to the dentist.  I can't say I love it, but I definitely prefer it to the 405 during rush hour, or watching an Adam Sandler movie made after 2008.  

Is it the cost? That could be a factor.  The last dentist I went to see (also for a long overdue extraction) did not take my insurance, and he too sent me home with a lengthy treatment plan.  This plan, however, was almost five times the cost of my current one, threatening to tip into 5 digits.  That extraction cost over ten times what my most recent one did. I was in no hurry to rush back and fork over all that cash.  Still, I spend significantly more than that each year on the rest of my medical expenses, between premiums, copays, deductibles, and uncovered expenses.  So clearly, there is a priority gap.

I think at the end of the day, dental care is just easier for me to ignore.  How many times in the past two and a half years did I say "I need to go to the dentist"?  Lots.  There was one missed appointment, a few half-hearted plans to seek cheaper treatment in Mexico (not uncommon here in San Diego), and guilt-ridden bouts of compensatory overzealous brushing, flossing, and gum-massaging.  But, absent any acute symptoms (which, miraculously given the sorry state of my chompers, I managed to avoid) it was always easy to put off actually getting to the chair.

Diabetes care, on the other hand, is a lot harder to ignore.  With 4-8 daily finger sticks, a CGM, and familiar symptoms on both the high and low end of bg-land, your head has to be pretty deep in the sand not to have a sense of what’s going on there.  The effects of exercise (or not exercising) on my health are felt almost immediately.  It goes without saying that if I stopped going to my endo or GP, and stopped getting prescriptions for insulin and test strips, that the consequences for my health would be impossible to disregard.  But (as I so gracefully demonstrated) it’s possible to go many years without a dental exam and experience few, if any, symptoms, even while serious problems exist and continue to worsen.  One of my teeth was, according to my dentist, just the tiniest bit shy of needing a root canal yet I had no idea.  I couldn’t even tell that one of my teeth is CRACKED COMPLETELY IN HALF.

So what to do?  Unfortunately,  a Google search for "home toothometer" turned up no useful results, and so far no one has come up with a better method than dentist's x-rays for measuring decAY1c (in fact, decAY1c isn’t even a thing. yet.).  So I'm going to try a more low-tech approach: schedule my next check-up and cleaning while I'm paying for my last one. That, and mentally preparing myself for an all-liquid diet starting at age 40.
*   *   *

(Ready?  Here we go with the Formal Bio.)  Christopher Angell is the Creator and Chief Person With Diabetes (PWD) of GlucoLift All-Natural Glucose Tablets.  Diagnosed with type 1 diabetes in 2007 at age 30, Christopher learned first-hand that for people living with a chronic illness little things, like the taste of a glucose tablet, can have a huge impact on quality of life over time. Dissatisfied by glucose products whose chalkiness and artificial ingredients unnecessarily exacerbated the unpleasantness of the low blood sugar episodes they were intended to treat, Christopher created GlucoLift so that people with diabetes could have a delicious, effective and natural way to raise their blood sugar.   He currently lives with his wife in San Diego, CA (and tonight he's on DSMA Live - be sure to tune in!)

August 23, 2012

Guest Post: Insulindependence in NC!

Harry Thompson is awesome, and aside from being one of the wordsmithiest people I've met and having one of the cutest kids ever, he's a fellow PWD.  And he's looking to connect with other people with diabetes who have exercise not only as part of their health management regimen, but as a passion.  Today, Harry is guest posting about his involvement with Insulindependence, and looking for some North Carolina local PWD!

*   *   *

Hi Harry!!!!I was diagnosed with type 1 shortly before my 12th birthday. I've always been an active person - I played baseball throughout high school, rowed competitively in college, and have been an avid runner, cyclist, and occasional triathlete in my adult life. (Of course that's become harder as I get older, with work, family, and toddler-wrangling, but those are challenges already well-documented by the proprietor of this fine blog.)

I ran my first half-marathon in roughly 2 hours and 20 minutes. That's not really impressive from a competitive standpoint...there are people who have run full marathons in less time. The reason I mention the time is that the duration of a single athletic event is longer than the combined time I've spent with my endocrinologist in the past two years. I don't mean that as a complaint, really. He's a great doctor, and I think I've done everything I can to milk every drop of goodness out of our time together - I see him 3-4 times a year, I bring all of my logs and graphs, and have all my questions prepared in advance. However, it seems that whenever I would ask my endo about how to prepare for an upcoming event or race, the answer was something like: "No one has ever asked that before. I would say cut your basal in half and test every hour. Let me know how that goes! Also, here are a couple of book titles you can check out."

I get it. He's an endocrinologist, not an exercise physiologist. I imagine many of his appointments are an uphill battle of getting patients to test their blood sugar and take their meds on a regular basis, so it's hard to be prepared for the questions from people that are trying to push their personal limits. And even if he was more familiar with that end of the spectrum, he's not there during the months of training, or the day before the race, or the morning of the race when I wake up at 300 mg/dl for no reason. So like many other things with diabetes, I had to figure it out for myself.

For many years, I truly felt like I was by myself. I didn't personally know any other athletes with diabetes. I knew they were out there - I'd read about Gary Hall Jr. and Steve Redgrave, but they seemed so far out of reach. As time went on, those other active diabetics became a little easier to find. I'd run across a TuDiabetes discussion here, or a blog post there. Eventually, I even had the chance to talk to some of the actual people that were mentioned as examples in those books my doctor had recommended.

For me, the real "a-ha" moment was when I discovered Insulindependence. Finally, an organization that exists to bring together and support active diabetics, rather than treating fitness goals as an afterthought! Through several friends that were involved with the organization, I learned about the various Insulindependence clubs (Glucomotive, Triabetes, Testing Limits, and A1Sea) as well as their monthly local chapter events, known as Dawn Phenoms. I started to get envious of other cities that had existing chapters, and thought how awesome it would be to have the opportunity to show up at a Dawn Phenom, meet other diabetics, and share stories of how they deal with the challenges of diabetes and exercise.

One slight complication (or "People of the Internet, I need your help!")...unfortunately, the Charlotte, NC area that I call home has no existing Insulindependence chapter. While it's an inconvenient truth, there is a silver lining. I've always had trouble finding my niche in the diabetes advocacy world. I tried my own blog for a while, but it just didn't feel natural. I think the JDRF and ADA do some fine work, I've just never found my place in those organizations. With Insulindependence though, I feel like this is finally a place where I fit in and can make a difference.

So long story short, I've volunteered to get the Charlotte chapter up and running (fitness pun!), but I'm starting from scratch. I know a few local diabetics; I have the books and support of the organization, but I need the network of other people that have the same goals. I know that finding SixUntilMe was a breakthrough moment for me, and it opened my eyes to the amazing interconnected world of the DOC. The reason that I've asked Kerri for the opportunity to write this guest post is that hopefully there are some fellow readers out there that are either in the Charlotte area themselves, or that you might know someone that would like to join our young chapter. I can't promise that charter membership in the chapter will get you any insulin discounts, but I can promise good conversation and a good time sharing ideas with at least one other active diabetic in the area.

If you or anyone you know is interested, please contact me at CLT.Insulindependence@gmail.com so that I can share the details of our local events, which will be starting in September! And even if you've never heard of Charlotte, I hope you'll consider becoming a member of Insulindependence. It's free, easy, and you'll be in the company of many other awesome people. And me.

Thanks to you for reading and to Kerri for the opportunity to use her soapbox!

*   *   *
Harry and his wife Meredith live in North Carolina with their gorgeous blonde almost-two-year-old daughter and a pair of lethargic felines. Harry may someday return to blogging at 25 Units To Go. In the meantime, you can follow him on Twitter @harrythompson.

August 10, 2012

Wrong Diabetes Diagnosis.

On Monday, the Wall Street Journal (look at me, linking to a real publication instead of a Strongbad email) had an article about doctors misdiagnosing type 1 diabetes in adults.  I posted a link to the article, called "Wrong Call:  The Trouble Diagnosing Diabetes," on my Facebook page and received several comments from people who went through a similar misdiagnosis.  They have offered to share some of their story here, and I'm hopeful that their words will help someone else in a similar situation.

The Initial Symptoms.
Jessica, diagnosed at age 26, was already familiar with type 1 diabetes.  "My diagnosis story actually begins with my husband, diagnosed with type 1 on his 21st birthday.  Fortunately he was diagnosed correctly and quickly, and we were able to get him all of the help he needed."  She described hitting a wall of thirst and exhaustion that set in when her son was nine months old.  "These symptoms continued for about a week, and mostly only bothered me at night.  During the day, although I was tired, I wasn't going to the bathroom constantly or super thirsty."

Lindsay had a similar experience, just before she turned 27.  "I was just a few weeks sPinging and ponging between proper diagnoses.  hy of my 27th birthday.  I had been sick a long time with weight loss, hair loss, you name it.  I ended up with intense upper GI pain that couldn't be ignored, so my mom took me to the ER where the symptoms were investigated with an ultrasound, blood work, etc.  The doctor came back to report that I had 'viral gastritis, likely due to your increased blood glucose level, which is 277.  Now, because of your age, you'll be considered a type 2.'  Love that one, eh?? My mom and I sat stunned; my dad had JUST been diagnosed with type 2 three weeks before."

Sarah also sang the same symptoms tune:  "The morning of February 22, 2007 I woke up and with diabetes without a doubt in my mind. I had nearly every symptom there was - constant thirst, frequent urination, fatigue. I had the works and I knew it.  I had a yearly physical coming up about three weeks after this and decided to wait until then to bring it up with the doctor. I realize now that this was foolish of me and that I really should have gone in right away!"

The Wrong Diagnosis.
Sarah was heading off to Europe the day after her initial type 2 diagnosis, armed with a bottle of metformin and instructions to see a doctor immediately if she felt at all ill.  "When I returned from Europe and for nearly five months, I had appointments every other week to monitor the progress of my BG readings and to adjust medications that ranged from Metformin to Glypizide to Byetta. By the time my last appointment in July had come around, I'd lost 45 pounds, the Byetta had caused my boss to think I was going to vomit every time I ate (even though he knew the side effects only included nausea, not actual throwing up) and for me to feel even worse than I had the 3 months before I began taking it. I was done. If I had to be a T2 Diabetic on insulin, I would be. But I was done feeling sick; being sick. My doctor offered to write me a referral, in which I quickly took him up on - even providing him with the name of an endocrinologist during that very appointment.  He gave me a prescription for insulin and a low dosage to start me off until I could get in to see the new doctor."

"We were given the name of an endocrinologist, a prescription for Amaryl and a prescription for a blood glucose meter," said Lindsay, recalling her initial diagnosis and treatment.  "We were told that once my blood sugars were under control, the gastric pain would go away.  I remember so clearly the nurse making sure I knew that as a diabetic my 'days wearing open toed shoes were no longer.'  No real information on what diabetes was, no instruction on how to use the meter, no information at all.  We left and I felt totally and completely lost. I was still so sick from the upper GI pain that I was relatively accepting of my fate because I was under the impression it would get better fast."

Jessica, however, had her husband's type 1 tools at home to make a quick check:  "One day, we went to my moms for dinner ... a night I now refer to as my "Last Supper."  It was my favorite meal - pot roast, mashed potatoes, loads of gravy, corn, bread, and Pepsi.  Immediately after dinner, I was going to the bathroom every 15 minutes.  I laughed about it, was a little concerned, but rationalized that I had drank a lot of water and Pepsi that day.  My mom looked at me and said sarcastically, "You should check your blood sugar!"  And it hit me.  My husband wasn't with us that night, but my sister drove me home, and we pulled out the meter:  HI.  'Bullshit,' I thought.  Check again:  HI."  She was off the the ER and sent home with a prescription of metformin, after minimal lab work.

Tipping Point, and Resolution.
That endocrinologist appointment was a true tipping point for Sarah.  "I remember my first [insulin] injection like it was yesterday. It wasn't much, but I remember feeling better within the hour. It was the best I'd felt in months - not only physically but emotionally, too. My fatigue and over all demeanor caused a lot of emotional angst that summer.  About a week later, during our first appointment with the endocrinologist, we [my parents and I] learned that I was a type 1 diabetic. She taught us about insulin to carb ratios, how to calculate them, when to take my injections for food and when to correct a high blood glucose reading, and what the difference was between Lantus and Humolog. She told me what was happening to my body and for the first time in months I understood. I was grateful for that day."

Lindsay also found quick, but bittersweet resolution at the endo's office.  "One week after visiting the ER, I met with my new endocrinologist who would be the first to tell me 'Um, no.  The doctors at the ER were shockingly and sadly mistaken.  Your A1c was 15.3 and you are, by every definition a classic case of a type 1, soon-to-be insulin dependent diabetic.  Your lab results are more than clear in that.'  I started SOBBING.  I had just accepted my fate as a type 2 who would have to watch my diet, maybe exercise some more and take medication.  I could handle that.  But shots???  UGH - no freaking way.  Looking back on it now, I'm baffled at how it was SO important to make sure I knew I shouldn't ever get pedicures or wear sandals again, but the meter?  The safe blood glucose ranges?  Ways to treat highs & lows?  Nah.  That wasn't important, I guess."

"I went to an endocrinologist.  I was begging for answers, telling her my story and asked if she thought I would ever be able to stop taking insulin," said Jessica, talking about her first visit to an endo. "She said, 'You know that you have Type 1, right?'  I cried, but more from relief that I finally had an answer.  My latest results had also revealed a hyperthyroid problem and she began to treat me for both.  I understand that I was extremely overweight and that's a red flag for a T2 diagnosis.  But it is terrifying to think about what would have happened to me had my husband not had a stockpile of insulin, test strips and needles for me to use.  We trust our doctors - and when we are diagnosed we do what they tell us to because we are scared, they know more than us at that point, and we want to feel better."

I only know what I know:  diagnosed as a kid with type 1 diabetes, never going through the pain and heartache of a misdiagnosis.  But after reading the WSJ article, and the stories from these women here, it breaks my heart to think of someone dealing with diabetes, but not finding answers, or relief.  All three women were misdiagnosed with type 2 diabetes and given oral medication, when they actually had type 1 diabetes, and needed insulin.

Jessica sums it up for me with this:  "I knew of only one girl with T1 when I was growing up.  I've met a few more as an adult.  What scares the hell out of me is the number of adult T1's I've met who are diagnosed in adulthood.  It's obviously a real and growing problem, and while our healthcare professionals are trained to see the signs in childhood, they aren't seeing it in adults."

February 01, 2012

Guest Post: Julia Goes to Denmark.

Today's guest post is from a fellow Clara Barton Camp alumni, Julia.  She's spending some time studying abroad in Denmark, exploring her new surroundings with her insulin pump by her side.  (Sidenote:  Every time I've met Julia, she's been armed with a giant camera in her hands.  My kind of PWD.)

*   *   *

This past semester, I decided to test out my survival skills and study abroad in Copenhagen, Denmark.

... okay so it wasn’t quite as dramatic as the Hunger Games-esque experience I was secretly hoping for, but I did have my fair share of diabetes moments that required some survival-of-the-fittest techniques (or as survival-of-the-fittest as a first world country can get). Prior to departure, I knew little about Copenhagen other than it has good pastries, lots of bicycles, free health care, and the largest number of happy people in the world. [Editor's note: Is this true? Are the Danish super happy?]  All things I’m strongly in favor of – so why not?

I knew I would encounter some challenges with diabetes, so I tried to take as many precautionary measures as I could. The biggest one was ending my nearly two-year pump-break and going on a shots-hiatus. I reconnected ole yeller [Editor's note again: I'm going on the assumption that Ole Yeller is the pump.]  back in July, about a month before leaving, while working at CBC, where I was surrounded by diabetes experts. This gave me time to readjust to pumpster and figure out some basals and ratios. I’m more in check with my diabetes while on shots, but I knew my life abroad would be hectic and I’d need some extra flexibility. Best. Decision. Ever.

For the most part, I feel like diabetes didn’t really impact my life in Copenhagen. I had an incredible time, and the majority of my daily life wasn’t too out of the ordinary. With the exclusion of:

  1. Weird carb counting (so this whole package weighs 534.7 grams and 100 grams has 29.8 carbs and each cookie feels like it weighs three billion grams soooo I guess I’ll just bolus for 12 carbs)
  2. Biking everywhere all the time (I love incognito exercise. Unless it’s 7:30 am and I need to bike 30 minutes to class and my blood sugar is 43)
  3. Living alone

The housing I chose gave me my own room, kitchenette, and bathroom. I lived basically completely alone for the first time. This was great because I secretly love being alone. But this also absolutely terrified me –What if I have a really bad low? What if I have a seizure? What if my pump breaks and then my back-up pump breaks and then my insulin all goes bad and I go into DKA and I’m too stubborn to tell anyone and then I slip into a coma? Thankfully, these things didn’t happen. I had my fair share of lows, but my dear friend Dexcom helped me catch them before they ever became too severe. And I had multiple run-ins with fairly massive ketones, but never to the point of needing medical attention. Phewf.

Julia in Denmark!! 

But my biggest dia-abroad-fail moment ended up costing me quite a hefty sum of money. One night, after leaving my meter and Dexcom in my apartment and with my pump was trickling on its last few drops, I lost my keys. My super intendant wasn’t answering his phone, so I couldn’t get the master key. So I coined some first world survival techniques and called a locksmith. But he ended up needing to drill through my lock, destroying it. Between the locksmith and the new lock, I ended up paying about 2500 Danish Kroner – around $500. Ouch.

This little fiasco was one of a few I’M GONNA DIE WHAT AM I DOING HERE moments. But they were always short-lived, thanks to this beautiful new thing called the Internet, where you can almost instantly talk across the globe to people with diabetes. I know my diabetes wasn’t as well managed as it has been in the past, and maybe I could have paid a smidgen more attention to diabetes. But looking back, I wouldn’t do it any other way. I didn’t let diabetes hold me back from biking everywhere or trying new foods or from traveling to seven different countries. I not only survived and avoided any real disaster, but I explored, learned, and grew; both as Julia-with-diabetes, and as just plain Julia.

*   *   *

Julia Romano has had Type 1 diabetes since the ripe old age of twelve, and is currently a junior studying psychology and theater at Skidmore College. In the summer, Julia ventures to Massachusetts to play with dianuggets (“dianugget”: a wonderful and adorable child with diabetes) at Clara Barton Camp. Julia loves elephants, knitting, and fanny packs – hoping to someday knit a fanny pack for an elephant. She isn’t sure where her life will end up post-graduation, but she knows it will probably involve grad school, laughter, and children with chronic diseases.

December 23, 2011

Guest Post: Diabetes For Christmas.

I wanted to share this guest post on this precise day because exactly five years ago, Lindsay joined the diabetes community as a person with type 1 diabetes.  She's sharing her diagnosis story today, and marking five years as a diabetes badass.  (Also, she's married to a "shit hot sailor" [her words], and I think that's awesome.  Lindsay and I met a few months ago in San Diego, and she's an incredibly smart and passionate part of the diabetes community.  I'm proud to host her words today!

*   *   *

December 23, 2006

Lindsay ... whoops, I mean "Linds."  :)After moving to Puerto Rico with the Navy in September 2006, December came, and it was time for my favorite yearly doctor appointment (joy). The gynecologist insisted that I have complete blood work just to make sure everything was okay (how did he know?). I went to Clinica Las Americas Guaynabo for my appointment. One week later I received a phone call from the lab that my results came back abnormal and I should try to get to my PCM as soon as possible. They refused to send the results to my doctor (down the hall); I had to physically pick them up and hand deliver them to her, when I could get in.

I went the same day to pick up my results, and sat in the car looking at them. Right away, I noticed the low and high markers that were out of clinical range. The glucose was 399 mg/dL, with a clinical range of 70-110, and the glucose in my urine registered 4+.

I went home, called my best friend Michelle, a nurse, and told her. She hesitated and said “Linds, you need to go to the doctor right away, that’s really high, and might mean that you have diabetes.” I was able to get an appointment on December 22nd to see my PCM, who said, “You might have type 1 diabetes, I’m going to send you over to the lab to redo the blood work and we’ll see what it says."  She put a rush on it. The result was 256 mg/dL, not quite 399 mg/dL (go pancreas go!), but still too high, so she said, “You have to go to the hospital and get insulin, we can’t help you here."

I thought, “Insulin? Puerto Rican hospital?”  Uh oh.

I was referred to Ashford Presbyterian Community Hospital in San Juan. I went home from the clinic and called Seth, and said, “We’re supposed to go to the hospital, because the clinic can’t handle my case, and this is the only hospital that will accept our insurance.” At this point, the importance of this trip was greatly misunderstood, and Seth happened to be getting off work early that day so his command could have their holiday celebration. I decided to go with, have lunch, and then we were going to go to the hospital (which I laugh about now). After the celebration, we left for the hospital with printed directions in hand, and whoa, with traffic, it took us quite a while to get there. When I saw the hospital, and after we finally found parking in this cramped and congested touristy area, I grew uncomfortable. We went to the ER, filled out insurance paperwork, gave them my PCM referral, and they brought me right back. Upon initial check in, they tested my blood glucose and it was 389 mg/dL, he said, “we’re going to have to admit you and get your blood glucose down into a safe range.”

There were no open beds in the ER, so they put me in the very back corner on a gurney, next to another patient’s day old food tray. It was dark and scary. I got up to go to the bathroom, and the bathroom floor was covered in urine, the soap dispenser was broken, there were no towels. I came out of the bathroom and there sat 10 or so staff members sitting at the desk with their feet up, chatting.

I was immediately hooked up to saline, and they came to inject insulin into my arm…right into my muscle (no subcutaneous injections here!). Every hour they would come and draw blood from my bony small wrists (no IV, just repeated digging around in veins in my wrist), and check my blood sugar. It was starting to drop. Two technicians came by to perform an EKG to check my heart, but they couldn’t figure out how to work the machine. They kept laughing and saying “You have to be smarter than the EKG machine.” At one point, the ER doctor came by and I asked, "Do I have type 1 diabetes?” She nodded, said "Yes," and then just walked away. At this point, neither Seth nor I really understood what was going on, nobody explained anything to us, and were both so overwhelmed that we sat and cried together. I told Seth I was scared, he told me that he would take care of me and protect me (which he has done 1,000,000%). 

When my glucose was in a safer range, the doctor gave me a prescription for insulin, and referral to an internist whom I could call on Monday (this was Friday) and make an appointment with. I asked where the pharmacy was, she said the hospital pharmacy was closed but there was a Walgreen’s up the street. After eight hours in the ER, I signed the discharge papers, and off we went at 12:00 am.

Continue reading "Guest Post: Diabetes For Christmas." »

December 06, 2011

Guest Post: New to Diabetes. New to Motherhood. New to Cancer.

Meghan's story is honestly one of the most amazing and terrifying whirlwinds I have ever heard of.  She went from "completely healthy" to a person with type 1 diabetes, then a new mom, and then a person with cancer ... all in the span of 18 months.  Her story is an important one to be told, and I'm really honored to be hosting her words here today.
*   *   * 
My name is Meghan.  I am a type 1 diabetic.  I am a new mommy.  I am a cancer survivor.  I am only 27 years old.  When diagnosed with Hodgkin’s Lymphoma last year, I scoured the internet for info pertaining to both Type 1 and cancer.  I found nothing.  I hope to provide at least ONE resource for people that might find themselves in a similar, unfortunate situation.

This is my story.

When I was diagnosed with type 1 diabetes in April of 2009, I was completely caught off guard.  I was a healthy person, or so I thought.  I ended up getting a Dexcom and Omnipod within six months of diagnosis.  Obviously diabetes was a huge change to my life routine.  My beta cells were still cranking out tiny bits of insulin, so I decided to take advantage of the “honeymoon period” and plan a pregnancy, figuring that would be the best time for blood glucose management. A short while later, on November 1, 2010, my husband and I welcomed our son into our lives. 

And when my baby was less than three weeks old, I was diagnosed with Hodgkin’s Lymphoma.  It was such a shock.  I only had a very slight pain in my chest that turned out to be a tumor the size of a baseball just above my heart.  When I heard that news, I knew my world and sense of security had changed, once again.  I was about to begin the fight FOR my life.  I remember yelling at the doctor who told me the news – “I was JUST diagnosed with diabetes, are you kidding me!!!”  I was so scared of what was to come.  Not physically, but emotionally.  I already thought that the burden of diabetes was too much.  I wasn’t sure I could handle my new reality as well.

Ironically, right after my diabetes diagnosis, I remember asking my husband “What will happen some day when I am like 80 and get diagnosed with cancer?  Will my cure be harder to come by?”  Who would have ever thought that fear would become my reality at just 26.  During my first meeting with my oncologist, I made it clear that I did not want diabetes to change my odds.  My 90% chance of a forever cure would not drop because of diabetes.  I received the same four chemo drugs as every Hodgkin’s patient.  I got the same dose of the steroid Decadron before every treatment (and had the pleasure of my pump dying during the process).  The only difference?  I had to think of crazy basal rate adjustments before getting the steroids and for two days after each chemo.  I think it was 3.5 units/hour!  My BG consistently ran 250+ for a few days after every treatment.  There was nothing I could do to lower it.  I stopped caring, I just wanted to survive.

Perhaps the part of cancer I found most challenging for diabetes was a PET Scan (actually two in my case).  In a nutshell, this test provides the doctor with a full body picture that illuminates areas of active cancer.  It is accomplished by the injection of radioactive glucose into a patient in a fasting state without insulin.  I couldn’t have food after midnight.  My first PET, I was still experiencing some postpartum blood glucose swings and was always low around 5 am and usually still requiring a snack at that time.  I tried to compensate with an 11:30 pm pasta binge.  With a PET Scan, you also can’t have insulin for three hours before the test.  Oh yes, and your blood sugar must be below 200 in order for the test to be functional!  Talk about a diabetic nightmare!  Of course I failed the process, twice.

As in every situation, it is important to find humor.  I remember waking up from my second biopsy to find my husband in deep thought pondering the placement and insertion of a new pod and Dexcom sensor (my doctor was very concerned that a blood sugar of 180 mg/dL be corrected, immediately.  Seriously?!?)  Watching him fiddle with the bolus function while I later downed pudding made me laugh (and made me nervous). He is now a professional when it comes to all things diabetes related!  I can’t even count the number of times I have had to rely on his diabetes-judgment and skills over the past year!  He has made me feel less alone in my little diabetes world.

Meghan and her adorable son!!
Meghan and her completely adorable son

As of today, I am in remission.  Through all of this I’ve learned that it’s hard when deciding how much to share with others, both about cancer AND diabetes independently.  I struggle with sharing too much about what happened in fear of pushing others away – with sharing just enough in hopes that they might understand me better but still see me as normal. 

Cancer was hard, the process grueling and I had a newborn.  But we made it.  I am on the other side looking back with a new insight – Life is simply amazing, especially since I know I am not supposed to be here.

*   *   *

Meghan has graciously shared her email, meghan.manor@gmail.com, if you want to reach out to her.  Thank you again, Meghan, and we are so glad you are here! 

November 11, 2011

Guest Post: Helping Scott.

Today, I wanted to share some words from Scott Benner, blogger at Arden's Day and dad to Arden (who has type 1 diabetes), to get the word out about his ambitious goal to help people with diabetes gain access to insulin pumps.  He's boldly asking for some assistance, and as someone who understands the importance of diabetes technology, I am happy to help him spread the word. Take it away, Scott!

*   *   *

Scott and Arden

My name is Scott Benner. I’ve been a stay-at-home father since my son Cole was born in early 2000. My daughter Arden was diagnosed with type I diabetes just after her second birthday, in the summer of 2006.  Exactly one year later I wrote my first blog post on my site, www.ardensday.com. Through everything, the diagnosis, coming to terms, and taking control, I’ve learned many valuable life lessons. A few of them stand out above the rest: perspective is most important and you pay a heavy toll to have it, transparency only leads to good things, and I should be doing more.

It’s the last one that I have struggled to put into practice. I share on my site so other parents will know what to expect and hopefully feel less alone. I love writing and I treasure the experience of interacting with this amazing online community.  But there is one aspect of my interactions with all of you that leaves me feeling empty. I first wrote about it in an entry over two years ago entitled, ‘Time and distance lend perspective’. After seeing the positive influence that device technology available now to type I diabetics brought to Arden and my family, it saddened me to realize they weren’t available to all who wanted them. I said in part:

“Insulin pumps aren’t covered by everyone’s insurance and they are quite expensive.  Children who are un- or under-insured are incapable of getting the relief that I described here...  I have been profoundly impacted by the benefits of insulin pumping and saddened by the fact that they aren’t, because of financial constraints, available to everyone who wants one.  I am at the moment not sure how but I want to find a way to change that...”

It took me two years, a lot of courage gathering, and some brief but powerful advice from Kerri to be able to say this:  I am moving forward to establish a charitable organization with the single goal of putting insulin pumps and continuous glucose monitors in the hands of the children that need but can not afford them. The initial paperwork and boring behind the scenes stuff is a bit arduous but I have done my diligence, plotted a course, and announced my intentions on my site.

The reason that Kerri has so kindly given me this space is that I can’t completely afford the initial payments that are required to properly file the necessary paperwork to qualify for charitable status. I almost let that stop me but then I thought, “maybe others would be able to support this goal if they knew how focused, passionate, and truly dedicated I was to making it a reality”.

So here’s the pitch:

In a few days I’ve all ready received some amazing gifts from people like you. People I’ve never met in person, that have no real reason to believe in me, but who like me, put hope above all else. If you can see your way to hoping along with a dreamer, then please follow this link for details on how you can be a part of bringing something positive and wonderful into the world. A world where too many children live with their diabetes everyday without the tools that they want and need and deserve.

Thank you so much for taking this time with me!

- Scott Benner - @ArdensDay

*   *   *

Thanks for your efforts, Scott, and good luck!!

November 09, 2011

Guest Post: Thai High.

The other day, I received a direct message on Twitter from Ralph about high blood sugars.  "Have you ever written about them?"  I knew I had, but I also knew that Ralph had just experienced a whopper of a high, so I wanted him to share his story.  Because, as he states, lows are scary, but extreme high blood sugars can make you nervous in an entirely different way.  Thanks, Ralph, for sharing your Thai-high.
*   *   *

Ralph.  I’ve always been more afraid of low blood sugars than highs.

But then again I’d never been through a really bad high before.

Killer lows, those where you drop into the 50s, the 40s, the 30s… the kind that leave you twitching, bathed in sweat and incoherent… are the quintessential diabetic horror story.   

But highs, serious highs, can be brutal in their own, more subtle ways.

It all started with Thai noodles.  

I know better than to have something like Pad Thai or Phad See U or Drunken Noodles for dinner.  I know I’m going to be bumping against 300 or so all evening if I do this.  Lunch with an afternoon to work it off?  Maybe.  Dinner? No… just no.

But I’d been running low all afternoon.  And everyone else in the house was talking about Thai, and my thoughts never went far beyond “Yum.”  I wanted noodles.

When I got home with the food, I checked my blood, and the meter showed I was up in the 200s.  How’d that happen? (For you non-diabetics in the audience, you want to be somewhere around 100.  Anything lower than 80 or higher than 200 is not a good thing.)  So I dish up about half a container of noodles, pop a Metformin,  and take a big dose of insulin from the pump to compensate for the high starting blood sugar and the honkin’ serving of carbs.

After dinner, I went to work at my computer.  But I soon had all the symptoms of a high creeping up on me.  My mouth was dry, I was really thirsty, I was getting irritable, and I really, really had to pee -- the whole constellation of symptoms you live with before you’re diagnosed.  

I took my blood, and the meter showed 395.  This was not good.  

I took a big bolus of insulin and went out for a 20 minute walk to help bring it down.  When I got home, I had to pee again.  

Bad.  

I took another reading.  Crap.  My blood sugar was up to 422.  I can’t remember the last time it got that high.  

I took some more insulin and sat down to try to work.  Half an hour passes;  I have to go to the bathroom again, and the meter shows I’m now up to 480.  This is getting scary.  I don’t remember being this high before.  I bolus more insulin.  And that makes me nervous about how much insulin I’m taking.  It’s been 12 units in the last hour. I don’t want to rage bolus my way into a serious low.

Another 20 minutes pass, and I’m feeling really bad.  Nothing as specific as a low.  Just bad.  The thirst is terrible.  I simply can’t drink enough.  I check again, and my blood is up to 565.  I’ve know I’ve never seen a reading like that before.  

As a symptom of the high, I’m starting to get angry.  

I didn’t do anything that bad.  I had half an order of drunken noodles.  They were spicy, not sweet.  Why is this happening?  This isn’t fair….

If I can’t get that meter to head down, I’m going to have to go the ER.  In addition to being expensive, it will upset the kid, my wife, and my mother-in-law -- everyone in the house who worries about me.

I don’t take any more insulin, but I get on the exercise bike for 45 minutes.  But halfway through I have to stop to pee one more time.  

When I’m done, I take my blood again.  I’ve never been so happy to see 460 on a meter before. What’s more, my pump says it’s safe to take another several units of insulin.

The trend over the next hour or so continues down, but the work I was intending to do is a complete loss.  I can’t focus, I’m exhausted, and I feel lousy.  I give up and go to bed, knowing that sometime during the night I’ll pay the price for all the insulin and have a low.

Which I do.

Lows are scary because you’re on the ragged edge of passing out, but the treatment is easy as long as you have juice, or glucose, or Cap’n Crunch around.   The worst that will happen if you over-treat the low is that  you’ll end up pushing 300.

But a high that won’t come down is dangerous on its own, but it can also prod you into taking more and more insulin to the point that you could take yourself down into dangerously low territory.  And I must confess I don’t really understand the dangers of venturing into the 600s, though I know they’re bad.

What really scares me is I don’t really know what triggered this high.  I mean, I know I had a bad dinner, but it wasn’t the worst I’ve eaten as a diabetic. What combination of factors made my blood sugar soar this time?

I was angry and railing about the unfairness of it all when I went high.  I know the anger is a symptom of a high because my wife still talks about how angry I was all the time before I was diagnosed 10 years ago.  I’ve long ago quit worrying about fairness.  The world isn’t fair, and I have a pretty good life.  But I’m not going to have Thai noodles again anytime soon.  Fair or not.

*   *   *

Ralph is a professor of communication at University of Nebraska at Kearney, and has been diabetic since 2001.  He blogs at ralphehanson.com and is on the Twitter @ralphehanson.  So what are you waiting for?  Go connect with him on Twitter - he's awesome.  :)

November 07, 2011

Guest Post: Love Story, with a Dia-Twist.

Jessica and I met, after emailing a few times over the last few years, at the Diabetes Sisters conference in San Diego in October.  She is contagiously optimistic, and hanging out with her was awesome.  Today, she's guest posting about finding love after diagnosis.  Thank you, Jessica, for offering to post today!
Jessica and Kerri, at the Diabetes Sisters event.

*   *   *
He stopped by to make a fool of himself and with that began to mend my fractured world.
 
A little back story…
 
It was December 1999. I had the flu and the world was going to end (Y2K, anyone?) The clock struck midnight and the world continued on just as before but I could not seem to shake my ever draining sickness. I was about to go on long trip from Sunny California to Snowy Massachusetts to visit my Mom and Gram. I stopped by the doctor on my way out the door for a steroid shot to keep my asthma at bay. It wasn’t uncommon for my colds/flu’s to linger so neither of us was too concerned.
 
My three and a half week trip went a little something like this: Visit, nap, eat, drink, nap, pee, drink, nap, pee, drink, sleep, sleep, and sleep.  The winter seemed to be taking a toll on me. The cold weather was making me extra tired and ultra cranky. It also seemed to melt thirty pounds right off my bones. It had to be all the heavy clothes I wasn’t used to wearing.

When I returned home, my dad picked me up at the airport and took me out to dinner. I drank a full pitcher of water before our order was even taken.  My dad looked at my intake and said “You have diabetes”. OK Dad, whatever. I laughed off his statement but did still feel like shit so the next morning I went and had some long overdue lab work drawn.

Fast forward a few days to February 2, 2000. I’m lying down for my 25th nap of the day and my phone rings. It was my doctor calling, at 7:30pm at night, with my lab results.  (Um, don’t you have office staff to do this during the day?)

“GO TO THE HOSPITAL NOW!” she yelled into the phone.  “YOU HAVE DIABETES AND YOU ARE VERY SICK!!”
So I did what anyone would do in this situation. I took a shower, packed a bag, made a few phone calls, cleaned out the refrigerator and then drove myself to the hospital.

It didn’t sink in until I was settled my hospital room and the nurses, needles, I.V.s, burning banana bags and oxygen came out.  It was then that it sunk deep into my soul. Would I ever be able to have kids? I have to do WHAT with needles? Will I get to keep my feet? Am I going to die? I cried the entire night.

February 3, 2000. My new life path is full of thorny bushes and endless rain or so I thought. I couldn’t see past the fog of my own fears and sadness to notice when he walked into my room.

“Hello! I’m here to take you for an x-ray.” He said.

“I just got my lunch and my medicine. I’m pretty sure I’m supposed to eat. I’ll eat fast if you want to come back in 10 minutes.”

“Sure. I’ll be right back.” He strolled out into the hall.

Two hours later…

“Hello, again! Are you all set for your x-ray?”

“What took you so long? That was the longest ten minutes ever!” I snapped.

He gingerly moved me from my bed to the wheelchair making sure to not snag any of my IV tubing probably hoping I wouldn’t go all crabby pants on him again. He made leisurely chit chat through the halls of the hospital, during my x-ray and back again. I mumbled a lot of yes and no responses just wanting to get back to bed and wallow in self pity. He dropped me off in my room and said his goodbye.

Hospital shift change rolled around a few hours later and I heard the curtain by my bed rustle. He walked in and stood in front of me.  

“Do I have to have more tests?” I asked my eyes blurring with tears.

“Um, no. I am on my way home but I thought I would stop by to see how you are doing. You seem very upset. And to be honest, I’m here to make a fool of myself.” He shifted from one foot to the other.

I wiped the tears from my eyes and finally looked at this kind man who had shuttled me all over the hospital that day. He was my age, tall with dark hair and a lovely smile. Not too shabby. Suddenly diabetes no longer engulfed the room.

We talked for a while that night and he came back to visit me every day after. He brought me a chess set and tried to teach me how to play. When I was finally stable enough to head home we exchanged numbers and arranged our first date. I picked a d- friendly place for dinner and he took me to the movies. We held hands and when he brought me home we shared a shy, sweet first kiss at my front door.

He was now a constant in my life just like diabetes. He was OK with my diabetes and all that came with it. It brought us together after all. His acceptance helped me be a little OK with it too. My path of thorny bushes and endless rain was now a little sunshinier.

Our path together has not always been unicorns and rainbows. We have taken side steps, backward steps and even some swirly steps along the way. But we stuck with it and have persevered for nearly 12 years.  I look forward to every day I share with that kind man, who is now my kind husband. On the days when I get really down about diabetes,  I am reminded that I should be thankful for it because of the path it lead me to and the wonderful life that has grown out of a simple hello and a broken pancreas.

Fairy-tale ending.

*   *   *

Jessica was diagnosed with type 1 diabetes when she was 20 years old. She has used a pump for 10 years and recently added a CGM to help reel in the highs and lows. She lives in Southern California with her husband and two sons.  [Editor's note:  And she's awesome.  And has the prettiest wedding photo ever. :) ]

October 12, 2011

Guest Post: World Diabetes Postcard Exchange.

Lee Ann Thill is the DOC's resident art therapist, and her work is just as important as insulin, in my opinion, because it feeds the soul.  Today, she's guest posting about the World Diabetes Postcard Exchange, and if you want to get involved, the details are below!  Let's rally for Real Mail with a diabetes twist!

*   *   *

My love of Real Mail started when I was young.  I loved getting cards and letters from my grandmothers, but it was the letters from my diabetes camp friends that made me step off the school bus and run home to check the mail.  Before the World Wide Web, it was Camp Sweeney and all the friends I made at camp that made me feel less alone.  During the school year when I wasn’t at camp, it was the letters I exchanged with those beloved friends that always gave me a reprieve from feeling different, letters filled with love and kindness, not just in the handwritten words, but in the time and effort it took to compose and send them.

These days, if you’re like me, you probably don’t get a lot of Real Mail.  You get bills, you get enough junk mail to wallpaper your entire home with enough left over to never have to buy toilet paper again… if only junk mail was less abrasive and more absorbent.  I’m just as guilty as anyone of abandoning the art of letter writing in favor of emails, Facebook, Twitter, and oh, right, blogging, as a means of staying connected to people.  Thanks to those means of communication, I have more friends than I ever imagined, and I can stay updated on what’s happening in their lives and how they’re doing.  I’d be the last to deny that the internet makes staying connected and updated very efficient.

AWESOME!

However, I still love Real Mail, and Real Mail with a diabetes twist is that much more special.  With fond memories of sending and receiving letters with my diabetes camp friends, and with the desire to do something for World Diabetes Day this year that transcended bricks and mortar, I’ve initiated the World Diabetes Postcard Exchange as a way for everyone to celebrate World Diabetes Day together, no matter where you live.  The World Diabetes Postcard Exchange is a means of connecting more people affected by diabetes to each other, and it’s an opportunity to get a little creative.  Here are the rules:
  1. Email your postal address to me: leeann@thebuttercompartment.com. If you would like to be matched with an adult, child or family, another type 1 or type 2, or if you are a type 3, spouse, sibling or parent, or other loved one, please indicate that. I will do my absolute best to match you with someone who is similar. If you don’t indicate any preference, your assigned recipient will be random in that regard, which isn’t necessarily a bad thing! I’m trying to match people who live far away from each other, but I can’t commit to specific geographic matching.  We’re sending old-school post office-delivered postcards, so I need your snail mail address.

  2. Expect to receive an email with the name and address of your postcard recipient. I expect to get those emails out around the end of this week.

  3. Use the WDD Blue Circle and all the creativity you can fit on a 3.5”x5” piece of heavy paper, cardstock, or paperboard.  I want the creative part to be as easy as possible, so check The Butter Compartment over the next couple of weeks for posts with simple ideas and inspiration for making your postcard.  

  4. On the back of the postcard, complete this mini D meme, in addition to anything else you’d like to share with your recipient, like URL or twitter handle:
    • Your name:

    • Where you live:

    • Your connection to diabetes:

    • Type of diabetes:
Year of diagnosis:

    • One thing you do to Act On Diabetes:

    • One Word:
  5. Mail it, ideally in time for the recipient to receive it by November 14th. If you’re unable to do that, please at least have it postmarked by then.

  6. Check your mailbox for a postcard from the person who was assigned your name and address.

  7. If you like, post a photo of the postcard you receive on the World Diabetes Day Postcard Exchange Facebook page.

Since this project was announced last week, we have over 150 participants, mostly from the US, but a few from Canada, Europe, Australia, and even South Africa.  I’m hoping that this week will bring many more participants, and welcome any and all efforts to help spread the word.  My vision is of blue circle postcards spinning around the world, connecting each of us with another individual or family living with diabetes.  Email your snail mail address, start working on that postcard, and tell your friends to tell their friends with diabetes – help bring the world into this World Diabetes Day initiative!

*   *   *

I signed up.  Have you?

September 19, 2011

Guest Post: Raising Colorado ... and Now Diabetes.

Zakary had me at hello. Seriously - she emailed me soon after her daughter was diagnosed and I liked her immediately.  Then I started reading her blog, Raising Colorado, and now I see that she's a total kindred spirit, diabetes notwithstanding.  Her beautiful girl, Zoe, was diagnosed with type 1 diabetes just a few months ago, and Zakary and her family have been adjusting to this new normal. 

But don't worry - they're doing just fine.  And they already received the memo about the cupcakes.  :)  Read on, and thanks so, so much to Zakary for writing today.

*   *   *

My best girl, my daughter Zoe, was officially diagnosed a diabadass eight months ago, five days before her 10th birthday. I was sent into an emotional tailspin those first few days, the most difficult hours were late at night in the hospital. I sat surrounded in the dark, the only light was the glow of machines keeping tabs on my frail, very sick girl that had lost 20 pounds, her poor body struggling without insulin since her pancreas decided to up and quit.

I sat on the uncomfortable vinyl sofa next to my daughter's hospital bed and poured over diabetes information, a stack of educational books, nutritional pamphlets and dosing handouts given to us by the hospital staff. Tears rolled down my face and they wouldn't stop. All the information in the whole world didn't mean anything. I needed to hear that we would make it, that we could do this, that we weren't alone.  I frantically sent my husband a message at two in the morning, as he had gone home with our son.

Bring me my laptop.

He obliged.

And I googled like I have never googled before.  I read diabetes stories and Twitter feeds and found a whole community of amazing badasses that I never knew existed.  Real people with diabetes that were going about their real lives and rocking it.  This is what I needed.

More importantly, the stories, the people...gave me so much hope.

Eight months later, here we are.  I watch my girl go about her diabetes life with such determination and grace that I find it damn near unbelievable that a mere ten year old  is capable of such a feat.  I find myself watching her throughout the day, secretly hoping that her awesome is contagious.  I will never admit this to her, my blog, hell, I rarely allow myself to even think it for but a moment, but diabetes and I have come to an understanding that the buck stops here, man.  Diabetes terrifies the everloving shit out of me on a daily basis and I grab onto the fear and tuck it away, I tuck it away for when I need it the most.  Diabetes is bigger than me, bigger than everything and the great big ball of fear is what keeps me here and in the moment, fighting for my daughter and diabetes cannot win.

Because I have too much to lose.

The fabulous Zoe.  Photo taken by her fabulous mom.
Photo credit: Raising Colorado.  Also, please note the cupcakes. 
Eight months into her diagnosis and she's already a total diabadass. 

August 12, 2011

Guest Post: For All the Ladies.

Carey Potash is one of my favorite writers.  Period.  Not one of my favorite bloggers or one of my favorite diabetes-centric scribes, but just plain one of my favorite writers.  His writing makes me think.  He makes me laugh.  (And he makes me cry while I'm laughing, but I don't realize it until my cheeks are wet.)  Carey has agreed to write a guest post for me today while I'm traveling, and I'm absolutely honored to have him.
*   *   *
Several years ago I stumbled upon a blog post that flat-out knocked me on my ass. It was a riveting and terrifying account of a young woman experiencing severe hypoglycemia while at the movie theater

I was immediately pulled in emotionally. I couldn’t help but view this as a future window into my son’s life – when he’s in his 20s and I’m not there to protect him when he’s in trouble.

Her vivid and eloquent writing thrust me into the scene as it played out like a diabetes thriller. I was a wreck. I found myself screaming at my computer screen – at the girl working the concession stand - while biting off half of my thumbnail.  “For God’s sake, give her the damn juice! She needs juice!”

The writer’s name escapes me now, but whoever she was, she was a huge influence on me as a blogger. I think her name was Linda something.

Just kidding, Kerri. The blog was Six Until Me and I became an immediate fan. It was right about then that I decided that I too wanted to write about diabetes and share my story as a father of a child with this disease. It’s an honor to be a guest blogger today at Six Until Me.

This one goes out to all the ladies.

The fourth-grade ladies.

Hey, I know you’re a little young to be thinking of marriage, but …

Hey ladies.

Look at this face. Come on. Is this not marriage material?

Listen, I know you always thought you would one day marry Timmy Clifford. Timmy Clifford is a fine choice. I’ll give you that. But let’s not be hasty. Let’s not let his supernatural kick ball skills cloud your judgment. Have you seen some of the lunch trades he makes? Oreos for Fig Newtons? Fritos for cough drops? Are you kidding me? He is a failed stock options trader in the making. You’ll both be living out of a Walmart shopping cart by the time you’re 29.

If you’re thinking that Charlie would be perfect if not for diabetes, don’t. If you’re thinking that diabetes is contagious, don’t do that either. It’s false. There is so much more to Charlie than diabetes. Everyone is a bit broken in one way or another. So, Charlie’s broken thing is a sticky organ the size of a woman’s sandal. There are worse things.   Charlie is strong like bull. He’s smart and he’s determined and he’s got a good heart. He can do anything. And he’d never, EVER, in a million years trade away Oreos. Choose Charlie! Act now and we’ll even send you this incredible onion peeler free.

OK, sure, he has some flaws.

He counts down NASA-style before launching every fart.  Even worse, he gives the pre-emptive “Uh Oh!”  just seconds before each blast. Your fear that he might still do this when meeting your parents and your two sisters for the first time at a fancy restaurant in Manhattan are legitimate. I’ll grant you that. I can’t guarantee that he won’t. I really can’t. Hopefully he’ll outgrow that.

Diabetes, he won’t outgrow. I hope you’ll know that and not give a crap. I hope you are blinded by love.
 
Know this. We’ve had Charlie enrolled in intense diabetes management training for more than seven years now. At 9 years old, he’s already quite adept at counting carbs, testing blood sugar and removing infusion sites. By the time you are married, we will have molded Charlie into a highly advanced, technologically savvy diabetes machine. Hmm, that probably doesn’t help my case. Scratch that. We will have turned Charlie into a nice boy with good morals, high career expectations and the tools to manage his diabetes responsibly.

Think of the pros of marrying a person with diabetes. You like going to Disney World but can’t stand those long lines? Well, when you’re with Charlie you’re with a VID (very important diabetic). No lines for you. Red carpet, paparazzi, complimentary Botox … it’s all quite lavish. Caviar wishes and champagne dreams.

Don’t know the time? Charlie is a human clock.

Need protection from British rioters? Charlie is always armed with sharp foreign objects.

Ran out of cake gel for that birthday cake you promised to make but the supermarket is closed? Check Charlie’s diabetes bag.

Late for work? Pulled over for speeding? Defaulted on student loans? Tell ‘em your hubby had a low blood sugar.  Works like a charm.

Oh, and speaking of cake, don’t listen to what Timmy Clifford says. Charlie WILL be able to eat his own wedding cake. Feel free to shove that wedding cake into Charlie’s gullet and smoosh it all over his face. Just remind him to give himself insulin for the cake if he gets caught up electric sliding all over the place. Just be there for him in times of need. Just like he will be there for you. The way all married couples should be, disease or no disease.

Or maybe you’ll never know a thing about life with diabetes. You’ll never become the worried wife of a diabetic. You’ll just grow old together.

You will be on one of your evening walks with Charlie, your liver-spotted hands clenching his. He’ll tell you again about how he had diabetes when he was a child. You’ll remind him that it didn’t stop him from being a star baseball and hockey player and a world renowned architect. He’ll squeeze your hand and nod. He’ll recall the incredible party his parents threw for him when he was cured at age 22.

And you’ll smile, having heard the story many, many times before.

*   *   *

Carey, if Charlie doesn't mind a younger bird, I know just the girl.  She's never liked that Clifford kid, anyway.

August 09, 2011

Guest Post: Sleep, Perchance to 100 mg/dL?

Jessica Phillips guest posted on SUM a few years ago, talking about her first 500 days with diabetes.  (Which prompted me to do the math, and as of today, I've lived approximately 9,097 days with type 1.  Weeee?)  And today, she's back to talk about how her perception of sleep has changed for her since her diagnosis in 2008. Thanks for posting today, Jessica! 

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Jessica Phillips, guest posting again on SUM.  Happy to have her!!There has been a topic of debate in my mind recently, and it revolves primarily around sleep and diabetes. Thinking back to my childhood, I fondly remember the arguments I would come up with whenever I was prompted by one of my parents to go to bed. My protests against what I now deem as the most glorious of all activities included: "No, I am not sleepy/tired/ready" or "I am just resting my eyes right now." In futile protest I would also rebuttal with “just one more TV show," or “just five more minutes.” My younger self was so adamant that going to bed was an inconvenience, and I'd keep putting off until it could not be put off any longer.  Sleeping seemed like a chore! Diabetes continually brings these childhood memories to surface and I have to laugh because I wish so badly for the simplicity of those memories from years ago where just going to bed was so easy, and yet I fought against it. Now that I am older, as well as a person with diabetes, I of course wish for an unreachable goal at the end of a long day - to just go to bed.

For the first 26 years of my life, my bedtime routine only consisted of, well, going to my room, getting into bed, and closing my eyes. I was diagnosed with Type 1 on January 25th, 2008, and since then my routine has developed into an elaborate to-do list. I now long for the days when sleep was so simple and the steps to reach such euphoria were just a pajama-change and a teeth-brush away.

My nights require me to not only stab myself in multiple areas of my body, but also include worrying about several things, including (dramatically), an accidental overdose or unintentional miscalculation possibly leading to very scary things. Adding to my nightly routine of removing my contacts (stupid nearsightedness), brushing my teeth, and sometimes washing my face, I now add: the testing of my blood sugar by pricking one of my fingers (or several if they’re not cooperating) on one or more test strips (those suckers really love to Error 5 sometimes), deciding based on that blood sugar reading what happens next, injections of two types of insulin (Novalog and Lantus), thinking about the last time I ate and what it was that I ate, calculating in any recent exercise/alcohol/food/medication (and by calculating, I mean guessing), batting away anxiety about possibly taking too much insulin or not enough, and worrying that I might wake up a few hours later either in a cold or hot sweat wondering what went wrong. Or even on the rare occasion I will, (now very dramatically), wonder if that night will be the night that I don’t wake up and my body decides to stop alerting me of hypoglycemia and I will become a victim of the feared "dead-in-bed syndrome."

For those of us with type 1 these nightly checklist items are all normal, because this is what we have to do in order to stay healthy and living. For myself, I notice a lot of the differences between a diabetic and non-diabetic lifestyle.  I have been living with Type 1 for 3 ½ years and I am still becoming adjusted to the fact that I have a chronic, and mostly intangible illness. I often wish for the ability to just go directly to bed without the worries and tasks involved with diabetes. I want to simply become tired, turn my alarm on, and go straight to bed. No worries, no anxieties, no fear ... just blissful sleep. Of course, if this were a diabetes wish list I would wish for a lot more than the ability to skip the nightly routine (Hello, cure!) but it’s hard to not miss the little things sometimes.

I will admit there have been several occasions where I have had to indulge in an irresponsible trip straight to my bed where I didn’t bother to check my blood sugar, take even my basal insulin, or allow myself to think about diabetes-related thoughts. I feel as though diabetes forces the need to establish such a high level of constant control over my life that it is necessary to sometimes just take a night off in order to not go into the crazy deep-end of psychosis. I always find solace in reading about other people’s experiences with type 1, especially pertaining to the emotional side of dealing with this disease because to simply put it, it’s a pain in the butt (and the hip, and the fingertips…). I can see why the depression rates are typically high with this illness because it’s such a never-ending chase to reach near-perfection, and the reality remains that it’s impossible.

Numbers rules our diabetic lives: A1C, mg/dL, carbohydrate counts, insulin-to-carb ratios, hours of time spent doing things that will affect the aforementioned numbers ... also known as "everything." If we diabetics had a hip-hop anthem it would definitely be called, “Numbers Rule Everything Around Me”.  [Editor's note:  Holy Wu-Tang reference!]  As I go off to bed, I try to remain grateful for everything I have in order to gain a more balanced perspective, but I’d be lying if I didn’t say that my wish is to run straight to my pillow and fall asleep.

So here’s to waking up to 100 mg/dL, and good night!

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Jessica Phillips is a California native living in San Diego, CA. She was diagnosed with type 1 on January 25th, 2008 and her goal is to stay connected with the T1 community both locally and online. Jessica has a Bachelor's in Art History, as well as a Master of Arts in Public Administration and is completing her schooling in February 2012.  She currently works as a graduate school counselor, and hopefully she'll be sharing her thoughts on SUM again soon.

As a PWD or the caregiver of a PWD, is your bedtime routine impacted by diabetes?  For me, I always have this compulsive need to check the insulin-on-board on my pump.  That, and I keep a jar of glucose tabs on the bedside table.  Without these two things, sleep is restless.  (Pun sort of intended.)

August 02, 2011

Guest Post: The PODS People.

When I was at the Roche Summit in San Diego last month, I had the pleasure of hanging out with Brandy Barnes, founder of The Diabetes Sisters organization aiming to connect and inspire women with diabetes.  We were talking, as a group, about how Pharma has partnered with and supported diabetes initiatives across the country.  And today, Brandy has offered to guest post about her PODS program, which helps bring in-person support to people with diabetes and is an example of a quality partnership. 

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Brandy Barnes"That’ll never work ... You can’t put type 1s and type 2s together and expect anything positive to come from it!" 

That’s a sentiment I’ve heard numerous times since I presented the concept of DiabetesSisters to the diabetes world back in 2008.  If you’re not familiar with DiabetesSisters, we are a nonprofit organization devoted to improving the health and quality of life of women with and at risk of developing diabetes; and advocating on their behalf.  In other words ... if you want to know anything related to being a woman with diabetes, we have a member, an expert, or a program that will help you find the answer! And, yes, we really want to erase the line that has been drawn in the sand between the different types of diabetes.

So, I’ve told you what it was like three and half years ago, now let’s fast forward more than three and a half years to July 2011: What started out as a woman who just really wanted to find a way to help women with diabetes and a trusting volunteer who agreed to be the first blogger on the DiabetesSisters website has now transformed into a bustling national nonprofit organization with not only online programming but also in-person programming. 

One of the cornerstones of our success is our PODS Meetup program.  If you are wondering where the name came from and what it stands for ... a volunteer who was involved in the creation of our first “meetup” came up with the name because the title “support group” was a bit tired and outdated. And after all, we are not the stereotypical typical support group you would envision.  We are a contemporary group of women who just happen to have diabetes and we like to meet up once a month to share our current concerns, accomplishments, funny stories, and even down-right awkward situations with diabetes.  We laugh, cry, and even get angry about our diabetes on occasion. Therefore, the name PODS (stands for Part of DiabetesSisters) was agreed upon because it invokes the feeling that we are all a part of something bigger, something specifically for women with diabetes.  The term "meetup" was agreed upon because it signifies that our modern and innovative approach to diabetes management in the 21st Century. 

Our first PODS Meetup took place in Raleigh, North Carolina in January 2010 and the Raleigh group has met on a monthly basis ever since.  Over the past 18 months, I have witnessed this group of Sisters form a strong sisterly bond with one another.  I have also seen them learn incredible lessons and uncover important health information from other women at the meeting.  Lesley Gray, a DiabetesSisters member who was diagnosed with type 2 diabetes a little over five years ago, shared with me, “Although my doctor had told me repeatedly that I needed to check my blood sugar more often, it just didn’t register with me ... until I heard my D-Sisters with type 1, type 2, and even pre-diabetes talking about the valuable information they gained from checking their blood sugars.  Now I understand that checking my blood sugar isn’t something I am doing to satisfy my doctor.  I am doing it because I want the valuable information I get from checking my blood sugar.  As a result, my doctor no longer has to remind me to check my blood sugar more often!” 

The first PODS Meetup

Another DiabetesSisters member, Pat Lewis, shared how she has lived with type 1 diabetes for over 50 years and had always managed it with insulin injections.  Although she had lived by the motto: “If it ain’t broke, don’t fix it” for many years, after attending a few PODS Meetups and talking one-on-one with women about their experiences with various pumps, Pat approached her endocrinologist about switching to an insulin pump.  "Although he was taken aback by my sudden take charge attitude, he was happy that I had taken more control over my diabetes management," she said.  Pat has now been on an insulin pump since the summer of 2010 and says it is one of the best decisions she ever made.  Then, there are the heartwarming stories of hope and support.  Kelli Turner, who has lived with diabetes for more than 21 years, and currently serves as the National PODS Meetup Coordinator said, “I always felt like there was something missing in my life….sort of a void in my life.  But, after my first PODS Meetup, it became very clear that what was missing in my life was the support of another woman living with diabetes ... another woman who really ‘got me.’  Life is good!”

Although PODS Meetups started in the Triangle Area of North Carolina (also our headquarters), it didn’t take long for the concept to spread across the state and even into other states.  We hold monthly PODS Meetups in three different cities in North Carolina and we have quickly “set up shop” (with the leadership of DiabetesSisters members, of course!) in San Diego, CA; Bracey, VA; Cincinnati, OH; Albany, NY; and Washington, DC.  We have PODS Meetups scheduled to start soon in many more cities/states, so there may be one in your area soon! 

You can take peek at the list of upcoming PODS, you can bookmark our Event Calendar, or you can register your interest in attending or hosting a PODS Meetup in your area.  What kind of diabetes you have, your age, or how long you have had diabetes is not nearly as important to us as just having the opportunity to welcome you into our ever-expanding Sisterhood and let you know that there is someone out there who really ‘gets you’! 

Now, every time I see one of those people who said, “That’ll never work”, I smile inside, so happy that I didn’t listen to them!  And that reminds me - a special thank you to Roche Diagnostics for seeing the huge potential and supporting the PODS Meetup Program early on! 

In Sisterhood,
Brandy Barnes, MSW
Founder/CEO of DiabetesSisters
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Thanks for posting, Brandy!  While I love the support found online, there is something even more powerful about spending time in-person with people who truly "get it."  How are you connecting with your fellow PWD offline?

July 21, 2011

Guest Post: Nor Shall My Pump Sleep In My Pocket

I'm traveling again today, but thanks to the musings of my type 1 friend across the pond, there's something popping up here on SUM today.  Actually, I love this guest post, because Tom Hrebren gives a Brit's-eye-view of the American health care system, and it surprised me a little bit.  And he opens with a little William Blake ...
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Tom of Brighton.  Not Maine.These feet (ulcer free) walk upon England’s mountains green. Albeit in not so ancient times but the present times and unlike those mentioned in that hymn which is an anthem to public schoolboys such as I; they still carry me from A to B unlike the feet of Mr William Blake who now spins in his grave thanks to me hijacking his hymn.

Kerri has graciously invited me to do a little waffling here thanks to a few choice comments of mine on a link she posted on Facebook in relation to her post “Need vs. Want”. She doesn’t know what she’s let herself in for. (Cue evil laughter.)

I’m here to give an Englishman’s, therefore an NHS patient’s, views on the care received by Americans.

Where to begin? Well, I suppose that I had best start with the quality of care. Here in the UK, where you live very much influences the standard of care that you receive from the nearest hospital to you. it’s called “The Postcode Lottery.” I myself have been a victim of it. My paediatric care was shocking. However, I am still under the same adult team at the same hospital yet my care is now fantastic. There are five DSNs (diabetes specialist nurse) for all the adult patients and two consultants. The two consultants have both cared for me and have been wonderful. The nurses are damn good, too. Compare this to the paediatric service: At the moment there is one dire consultant under whose care I was once under. There is one paediatric DSN who has to split her time between that hospital and its sister hospital. She is also abominable.

In America, where you live seems to have little or no bearing upon the standard of care you receive as you can pretty much pick and choose who you see. If you want to do that in the UK, you have to get a referral to the team which you want to see. This is now much easier under Patient Choice than it used to be. Many parents of kids with diabetes that I know are referred (not without struggle) to Professor Hindmarsh and his team at University College Hospital, London, or other centres of excellence such as Leeds. This is because the care in their local area is dire and totally unsatisfactory.

Technology is my next one. Many more type 1s in America are insulin pumpers than there are in the UK. This is because it seems to much easier in America for a consultant to get the insurance companies to hand over the cash for pumps and CGMs. Here in the UK it is vastly different. Pumpers such as I are fewer in number. Many have to fight tooth, claw, and nail to get them. This is for many reasons; number one amongst those is the interpretation of the NICE (National Institute of Clinical Excellence) guidelines on insulin pumping. In essence, if a consultant states that you are suitable for a pump and would benefit from it then by law the PCT (Primary Care Trust, an organisational unit of the NHS, soon to be abolished) has to pay for one. It’s all nice in theory, however in reality it is much harder as PCTs have been known to put pressure on consultants as they don’t like paying for them due to the costs of the initial outlay and maintenance of a pump. That’s the second reason. Thirdly, consultants can be positively anti-pump and their interpretations of the NICE guidelines can be horrible.

Money, something that everyone understands easily. As an NHS patient I pay nothing towards my care directly. It is all paid for in my taxes. Americans are obliged to pay for private health insurance. Here some people choose to go private as they can afford to do so. Americans are obliged to. Sometimes the accountants seem to know what’s best for you, at least it feels like that. My major bone of contention is test strips for my BG meter. I get three hundred per prescription. This was upped last year from two hundred and fifty. When I suggested that to my GP (general pillock, whoops, practitioner I mean) she mentioned money and it being very expensive. Almost as if I was asking her to pay for my treatment herself. She gave in at the end. Had she put up more of a fight I would have asked for her to compare the cost of having me blue lighted to A&E by ambulance owing to DKA or an unnoticed hypo because I had run out of strips and the admission A&E, possibly HDU and ward after A&E. That usually gets the buggers. However, I will happily admit that the care I receive at the moment is the best that I have ever had.

That said, ultimately you get what you pay for. If an American can’t afford a good insurance deal then they ultimately get substandard care which never fails to shock each time I hear a horror story about health care in America. What is nice to know is if I ever need to roll into A&E I will never be asked to provide my insurance documents. I have been told hair raising stories by former colleagues who have holidayed in America and been forced to fall onto the hospitals there.

How am I to end this before I drop into the “I’m going to rant all night” mode? It’s a sad note for me to end on but from what I understand and what I have learned of American health care over the years it is more of a profit generating industry. It seems to revolve more around the money than the patient than the NHS does. I fully understand that the NHS has its own financial issues, however, they are in different areas and sometimes less prominent. I’m glad that I pay for my health care through my taxes as then the government is the only person shafting me. To my mind the government is more accountable than a health insurance company and less likely to try rob you blind. I would hate to have to fight against a commercial giant. I just have to fight against a government, the playing field is more level and I find that I can use more back doors than I suppose I would if I were tussling with a private company. It’s pitiable, at least in my eyes, that something which is so vital to every person on the planet seems to be so greatly orientated by money.

I’ve not covered everything as if I had, you’d be here well into the next century. Please don’t get me starting on overhauling the NHS as I have been known to go a bit mad at times …    
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Tom offered up his own bio, which I loved, and didn't want to change a word of it because something about "I start scaring people in September" sounds awesome.  Note:  He doesn't link to a blog, his Twitter account, or anything else social-media-y.  He's a true trailblazer.  :)

Tom's Bio:  What is there to say? My name’s Tom. I was diagnosed in August of 1996 (records have it as the tenth of that month). I’ve been pumping a year. Currently living in Brighton but soon to move to Oxford to become a student nurse, I start scaring people in September. I haven’t quite got a favourite tea, more a favourite beverage quite local to me – Harvey’s Sussex Bitter but I take my tea white with four sugars (twenty grams of carbohydrate). I apologise for the photo. It’s from my leaver’s ball at college and set the standard of photos of me for the next two years. I’m drunk.

June 20, 2011

Guest Post: What is a Diabetes Superhero?

If you don't know Captain Glucose and Meter Boy, you are about to have your animated world rocked.  This dynamic duo, aka Bill Kirchenbauer (Captain Glucose) and Brad Slaight (Meter Boy), are tireless advocates for the diabetes online community. They rap.  They advocate for why glucose meters matter.  And today, they're premiering their new PSA here!

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There are many important questions in the world today, like: Will there ever be peace in the Middle East? How will America pay off the deficit? What the heck is that thing on Donald Trump's head? We have no answers for any of those, but we can answer the question we are asked the most often: What is a diabetes superhero?
 
Years ago when we created the characters Captain Glucose and Meter Boy: The Diabetes Duo, we patterned them after iconic do-gooders like Batman and Robin, The Incredibles, and other non pancreas challenged comic book superheroes. We both have diabetes and being in the entertainment industry we felt that we could best contribute to diabetes awareness by using our creative talents. We came up with a TV pilot to star in but our agent said no one was interested in a sitcom about diabetes called "$#*! My Meter Says" so we decided to make a short humorous PSA (public service announcement) instead. We believe that basic diabetes information is more accessible if it's presented in an entertaining manner. At first we played the characters as live-action real people and we dressed up in handmade costumes, which really made our friends and family question our sanity. But we have since changed them to animated characters with special powers. We did this for two reasons: 1) animated characters have more of a visual impact, and 2) when you're a cartoon you never age or put on weight! 
 
Since first creating Captain Glucose and Meter Boy, we have come to realize that there already exists many real life diabetes superheroes. They can be found in the diabetes online community, or more acronymically appropriate, the D.O.C. They don't wear tights (good thing because those can really chafe) but they are on a similar mission to share their knowledge and help others. They are not in a lab looking for a way to cure "mouseabetes." These real life diabetes superheroes are at their computers spreading the word, writing blogs, supporting those in need, representing all of us at conferences, and fighting the good fight day in and day out. It is a long list of names that is growing faster than diabetes itself and they work tirelessly to help others without ever asking anything in return. Theses D-heroes are making a difference in the lives of many.
 
Dr. Seuss said in The Lorax, "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." (He's good, but probably didn't write any stories about our disease because there aren't enough words that rhyme with diabetes.) His touching poetic line applies to the many people in the diabetes online community we've met who do care a whole awful lot. They are willing to share their knowledge, experience, successes, failures, hopes, fears, dreams, tears, laughter...and on occasion even something as effectively simple as a Diet Coke. Captain Glucose and Meter Boy's motto is "Be Your Own Personal Diabetes Superhero." These amazing  people help make that an achievable goal for everyone.
 
So now whenever someone asks us what a diabetes superhero is, we tell them to go to their P-C or M-A-C and log on to the D-O-C. That's where all the real diabetes superheroes hang out ...just don't expect them to be wearing costumes!
 
Here is our new animated diabetes PSA about fighting apathy. It introduces our newest team member Dee Dee (a.k.a. D-Girl). We are honored that Kerri, one of our favorite diabetes superheroes, is letting us "world premiere" it here on Six Until Me.

-- Bill Kirchenbauer (T2) and Brad Slaight (T1)

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(If YouTube is on the fritz, you can also check out the video on the duo's website.)  Thanks for helping to raise awareness and defeat apathy, guys!!!  

June 10, 2011

Guest Post: Why I MDI.

Yesterday I wrote about a diabetes technology piece that works in my life.  But wearing a device - two or three devices, some of us - isn't for everyone.  Diabetes management varies like New England weather (hello, 95 yesterday and 68 today).  Today's guest post comes from Erin O'Neil, who eloquently shares her tale of why she went from pumping to injections.

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Thank you to the lovely Erin for sharing her words on SUM today!“Ohhh no no no no no! Ohhhh my goodness, oh my goodness. You have GOT to be kidding me!”

These are words of panic I had hoped not to have to utter on my trip to Thailand.

After four years of staying close to home for university, my best friend and I had decided to get a little crazy and head overseas for an adventure.

When I uttered those words, I was in a state of true panic, in a small town on the edge of Khao Yai National Park, 200km north-east of Bangkok and way way way into the mountains. In other words, I was a long way from home.

My pump had broken.

I know it was the heat. For most of the week since we had arrived, the weather had been downright sticky, and I’m pretty sure that Animas doesn’t expect that many of their insulin pumps will need to withstand constant 40o temperatures (well over 100o, for you Americans).

Luckily (thanks, Mom), I had brought a back-up system. It was back to the insulin pen system of multiple daily injections (MDI). I vividly remember sitting on my cot in partial darkness, listening to the sounds of a million insects in the muggy heat, sleep deprived and achingly tired from a day of train travel (think ‘rickety’ rather than ‘luxury’).

My brain isn’t working properly and I’m already riding a serious wave of high blood sugar. And now I have to remember how on earth to go about calculating a short-acting/long-acting insulin ratio.

Somehow, I managed. With the help of a good friend and a good bowl of something delicious (and a refreshing Singha to calm my nerves), I began to feel normal again.

And before I knew it, the rest of the trip had passed without incident and I was home again, safe and sound.
“Well,” said my parents, “let’s get you a replacement pump.”

It was covered under warranty, no additional cost to us. It would have been simple to do the exchange and be up and running and bolusing in no time.

But I hesitated. The last two weeks of vacation in Thailand had be wonderful not only because I was doing nothing but eating good food and laying on the beach, but also because I hadn’t once worried about that little machine.

This was more than two years ago now, and I’ve continued using MDI (multiple daily injection). I know that my control could be better – whose couldn’t – but for this time in my life, MDI works for me. When my pump broke on that frightening night in Thailand, I was heading into my fifth year of pumping.

I had forgotten how delicious it is to be unattached, to be able to wear an outfit without worrying where to hide the pump. To be completely and utterly naked.

Diabetes has already stolen a handful of freedoms from me. For now, I’m not willing to give up anything more than I have to.

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Thank you for your post, Erin!!  Erin works in public relations and communications in Hamilton, Ontario, Canada. She has been living with type 1 diabetes since the age of 14. You can read her blog at Oh Erin and follow her tweets at @oerinoerin.

May 19, 2011

Guest Post: Diabetes and Eating Disorders.

Today's guest post is from fellow T1 PWD, Megan Roy.  Megan has gone though some difficult times with her health, and she's bravely sharing her story with us.  Thanks, Megan, for being so honest.

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Megan RoyThe first couple of years with diabetes, it honestly didn’t even affect my life much at all. I took shots in my belly and pricked my fingers and that was about it. I still was very active in sports, running and playing tennis whenever I wanted to. It wasn’t until I got into college that diabetes really started to affect me in a way that I wasn’t expecting.

As my A1C began to creep up, my weight also crept up (it happens when you exchange long runs for nights out with friends). Emotionally, this began to weigh heavily on me (literally!). I did what all of my friends seemed to do at the time; I started trying to manipulate my food intake and exercise routine. I thought to myself about when I was first diagnosed, and figured out the weight/insulin connection as well. I minimized my insulin dose to that of a small child. My doctors were confused, but my sugars were improving, so they were happy.

I have always been a perfectionist. I have always been a Type A personality. Give me a challenge, and I will overcome it. So now we have the challenges of being a little different in college with the diabetes + the challenges of every college-aged girl (weight maintenance and awareness) + a perfectionist mind set + body image issues + spending hours researching and figuring out numbers = disaster.

My seemingly harmless diets spiraled over my college years into a full-fledged eating disorder. As hard as it is to talk about, I suffered from anorexia. Sparing the dark details as to how and why, let’s just say it was the worst time in my life. I didn’t feel like myself and I was fully isolated from everyone I loved and cared about. The eating disorder hospital was the hardest struggle I have ever had to take on. This paired with diabetes usually doesn’t turn out well.

Luckily, now two years later, I am not longer in this battle, but I feel like these sorts of issues need to be talked about. I know I am not the only one that has issues like this, and I feel like a conversation needs to be started about the emphasis put on diabetics and food. The main focus when I was diagnosed was put on food (or at least in my mind). It was the one aspect of this uncontrollable and frustrating disease that I had some control over. However, I now have a more balanced mind-set, and know different coping skills and tools that can help me when I have a tough day, week, or month.

Everyone has different struggles, but always know that there is someone who feels the same way, or has gone though similar issues. There isn’t one way to overcome an eating disorder, and it is something that can be a struggle your entire life, and is for many people, but I would say that having supportive, loving people around you makes it easier. It was the toughest struggle of my life, and at some times, I didn’t even know if I would be free of it. I would say the most important thing I can say is that if you are struggling, tell someone. Eating disorders usually come with a lot of embarrassment and shame, and they are hard to explain to people sometimes, but starting the conversation is the most important part.

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Megan completed her studies at DePaul University in Chicago, majored in communications, and is now working for a vitamins and supplements company. She blogs at Type 1 Diabetes: The Stuff Doctors Don't Tell You!, so skip over and to read her posts and welcome her to the DOC.

May 17, 2011

Guest Post: The Reasons I'm Healthy.

While I'm traveling this week, I thankfully have people like Alex Jordan, who are willing to jump in and offer up a guest post.  Alex is a PWD from England, and today he's sharing the story of two wonderful women in his life that made a huge difference in his diabetes care.

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Thanks, Alex, for posting!I’ve been a type 1 diabetic for the best part of 20 years now. I have also lived in 5 different countries, only one of which had a decent health care system. Interestingly, it has also been the case that almost the entirety of my health care has come from that one country. Further, for a period of roughly 12 years, my diabetic care all came from one hospital, and mostly one person.

The reason for this is pretty simple. My father worked in the oil industry, and as such, where there was oil, he was duly shipped out to handle it. However, oil is rarely found in countries with a health care system anywhere near that of the UK’s. When I was very young (6-7) I had the relative luck of being a patient in one of the best diabetic hospitals in the country. My mother, being the woman that she is, quickly made friends with my diabetic nurse, and kept in regular contact with her, as only a maternal instinct can make people do.

Not long after that, a period of upheaval started occurring, culminating with us moving to Bolivia when I was 11. Even whilst in the depths of the Amazonian rainforest, my mother still managed to keep in touch with the diabetic nurse in the UK, and she was always available should anything have gone wrong. By rights, I was no concern of hers, as I was about as far away from Oxford as was feasibly possible. However, I was still her patient, and I imagine even to this day that’s how she’d view me.

Whilst in Bolivia, I still remained under the guard of the National Health Service as well, and was kept suitably well supplied by my father, during his many business trips back to the UK. For anyone familiar with a UK pharmacy, getting a prescription filled in under 48hrs was, back then, a minor miracle. And so life continued. I don’t think I ever saw a doctor in Bolivia about my diabetes, but instead went back to the UK twice a year, to see the same diabetic nurse. The continuity of care throughout this experience was astonishing, and could certainly not have been achieved without my parents, who, although I don’t tell them enough, I am eternally grateful to for all the work they did in order to keep me healthy.

At around age 15, I returned to the UK to attend boarding school, whilst my family moved to Brazil. My school was around 2hours away from the hospital, and yet I continued to journey there, in taxis funded out of my parents’ pockets. Since coming to College, that relationship has sadly ended, and I have not seen that hospital in several years. All I know is that the continuity of care made my diabetes bearable in a time of relative turmoil where by rights it should have wreaked damage upon my body.

And it probably would have were it not for that one diabetic nurse, and my parents. Its not every day that you get to look back and reflect upon how rare people like this are. But I think my mother, in her infinite wisdom, saw what a brilliant diabetic nurse this woman was, and held on tight. All I can suggest, is that if you do find someone like this, do as my mother did. Genuinely great healthcare professionals aren’t a dime a dozen, and I can only thank my mother for realising this. Between them, these two exceptionally strong women are the reason I am as healthy as I am. It is a shame not all can be as lucky.

*   *   *

Alex's bio (which I haven't changed because I like it just the way he wrote it, here, there and everywhere and all):  "I've been a type 1 diabetic since I was two, and haven't really experienced anything other than living with diabetes.  Since traveled here, there and God-knows-where, and have eventually settled back in the UK to pursue a Law Degree, with the possibility of specialising in Medical Law in the future. And you can find me (sporadically) tweeting about diabetes and soccer at @alexhjordan."

May 16, 2011

Guest Post: Alissa Carberry, Gluten-Free Style.

A gluten-free life doesn't mean you eat rabbit food all day long.  And thankfully, today's guest post is out to prove just that.  Alissa Carberry is a Clara Barton Camp alum, fellow person with type 1 diabetes, and rockin' a gluten-free lifestyle, thanks to celiac disease.  Today, she's offered to guest post about life with diabetes, celiac, and the power of a good old fashioned grilled cheese sandwich.  Take it away, Alissa!

*   *   *

Alissa is awesome.  See post for details.  :)It’s a double whammy:  I’m standing at a birthday party for a friend, and there’s a large birthday cake, waiting to be cut up and devoured.  It’s like that scene in Office Space, where everyone’s passing slices around and there’s that one kid waiting and waiting for his slice.  When a piece gets to me, I politely refuse it, putting a hand out and saying “Oh, no thanks!”

“Ohhhhh, because of your diabetes, right? No sugar?”

And thus begins the difficulty of having two autoimmune disease- type 1 diabetes and Celiac Disease.

It’s one thing to explain why I only drink diet soda and have sugar free maple syrup. I pinky promise strangers that eating a candy bar won’t kill me.  But a slice of chocolate cake?  An entirely different story.

In the middle of my senior year of high school, I was diagnosed with a gluten intolerance- no more wheat, barley, rye or oats, cutting out the staples of a lazy teenager’s life: no pizza, cookies, rice krispies, or sandwiches.  You name it and it’s sold in a box, it probably has gluten in it.  I had to re-learn food labels, hunting for the ingredients that are waaay down at the bottom of the list- who knew that lindt truffles needed barley to taste so good?

Suddenly, I had to make all the decisions on where we eat, and my friends were thrown into temporary insanities on remembering not to offer me most of the foods they ate-diabetes was tricky enough, but now they were worried they’d “poison” me too.  We joked I was part bunny-rabbit, eating carrots and lettuce, laughing that my parents wouldn’t need a lawn mower anymore because I could just eat the grass.

And then this little bunny rabbit had to go to college.  A school filled with tons of students and many a place to eat.  Within the first week of going to UVM (University of Vermont), a girl on my floor had found me a poster, advertising for the first ever meeting of ... A GLUTEN FREE CLUB?! It couldn’t be! I felt the cilia dancing in my stomach as I went to the first meeting a week later.

Entering the room, I found a group of people that were just like me- tired of eating lettuce and salad.  “No more!” we cried, holding our carrots in the air, waving them around. (Alright, so not quite, but you get the picture)  We used our hunger as a tool and began having bi-weekly meetings, cooking gluten free dinners together and trading tips on living the life on a campus where the dining halls made an almost half-hearted effort.

Within the year we became a student government recognized club, receiving a club budget and our own sga website. The dining halls have slowly but surely become more accommodating, although quite a few of the workers still haven’t a clue what the word ‘gluten’ even means.  We’ve used our voices (and our intestinal tract!) to make an impact, and are spreading knowledge all across campus.  Recently, we’ve teamed up with a non-profit, Feel Good, to sell gluten-free grilled cheese.  And let me tell you, there’s nothing better than the taste of grilled, savory inclusion.

*   *   *

Alissa Carberry is a junior at UVM, majoring in Early Childhood Special  Education, with a minor in sassiness and autoimmune education.  A very recent alum of Clara Barton Camp, Alissa loves talking about her diabetes, answering questions about her "pager," and drinking all the iced coffee she can get her hands on.  (Editor's note:  I'm drinking all the iced coffee Alissa doesn't have her hands on.)  Alissa loves all things poetry related, dress-related, and gluten-free related.  

May 04, 2011

Guest Post: Alabama PWDs Need Your Help.

This guest post is from fellow diabetes blogger Victoria Cumbow, and her message couldn't be more important.  She is a journalist by day and a diabetes advocate by night. She works a journalist for The Huntsville Times in Huntsville, AL, and is actively involved in her local diabetes community.  Victoria regularly blogs about her life as a young professional living with type 1 diabetes at Dia-Beat-This, and tweets as @victoriacumbow. And today she's writing about the tornadoes in Alabama and their effect on our fellow PWD.  Please read her post, see if you can help, and pass this info on!!

*  *  *

Photo credit to Victoria Cumbow and her cell phone.Last week, my state was devastated beyond belief after a series of tornadoes swept across the northern counties of Alabama. In Madison County, where I live, eight people died. In DeKalb County, 33 people lost their lives. In another county, 39 people died. In another, 35. So far, more than 230 lives have been lost, but in Tuscaloosa, more than 200 people are still missing and unaccounted for.
 
As a newspaper journalist, I've seen this devastation first-hand. It's beyond anything you can imagine. The pictures don't show the pain and the suffering. The pictures don't show the heartbreak and the loss. Volunteers have stepped up and answered the call, but there's another need people sometimes forget in moments of natural disaster and chaos -- the needs of diabetics.
 
In Alabama, 10 percent of the population lives with a form of diabetes, per the CDC. So what the pictures don't show are the dozens, if not hundreds, of diabetics affected by these storms. I spoke to a woman three days ago who called me desperate for insulin. She had enough Novalog to last two more days, but had been without Lantus for several days. She couldn't reach her doctor because there was no power throughout the county for six days. Through donations from the DOC, she now has a vial of both.
 
So in addition to the disaster left behind by the twisters, we were left to pick up the pieces in the dark. No refrigerators, no gas, no cell phones once they died. People lost every belonging they owned, and some lost every diabetic supply they had stored. No meters. No strips. No glucose tabs. No pumps. No way to test ketones. With no power, the only thing to eat were carbs and junk food. Most proteins were lost with the power of refrigerators.
 
I wanted to help, but from my newsroom, I couldn't do very much other than through my words. So I began to write. I blogged about our immediate needs and people began to respond. I blogged more, I tweeted more and I Facebooked more. People from across the DOC answered the call. And they're not finished yet. We are still in need of many supplies. For starters, the biggest needs include meters, strips and all types of insulin. Beyond that, anything else is appreciated. You can send:

  • pump supplies
  • syringes
  • lancets
  • alcohol swabs
  • batteries for pumps and meters
  • glucose tablets
  • glucagon
  • ketone strips

And anything else you can think of. Please make sure all supplies are unopened and not expired. If mailing insulin, please package properly. Also make sure any personal labels are removed from the packages.
 
All supplies can be mailed to the Huntsville JDRF office at 2225 Drake Ave., Office 17, Suite K, Huntsville, Alabama 35805. Mark the box as D-Supplies for Tornado Relief. Address them to Victoria Cumbow and Karen Morris.
 
So far, this volunteer effort has been incredible as local JDRF and ADA offices are working together with local politicians, the Medical Reserve Corps and local endocrinology offices. As a friend said, a ripple is small, but many ripples make a wave.

*   *   *

To further these efforts, you can also help by making a donation to the local Alabama Red Cross at this address: 1101 Washington Street, Huntsville, AL 35801. People can also donate $10 to relief efforts by texting "REDCROSS" to 90999.  Help make a wave!!!

April 20, 2011

Guest Post: Type 3 Diabetes?

Today's guest post is from one of my favorite "kid with diabetes" moms - Moira McCarthy.  Moira is a champion for kids with diabetes and their parents, and she's recently joined the blogosphere with her blog at Despite Diabetes.  Moira, in her words, "hopes to be an unabashed voice in the world of working toward a cure."  And today, she's sharing her voice here on Six Until Me.  

*   *   *

Thank you, Moira!Having been in – and quite visibly in – the type 1 diabetes world for a very long time now, it’s hard for me to go anywhere without some kind of D-nection (diabetes connection) surfacing.

A recent ski industry cocktail reception was no exception. The room was full of outdoorsy types. Burly men, women’ with tele-butts, everyone either spotting a goggle tan or envious of those who had one. A friend told me there was someone a simply had to meet: a man who ran a large Nordic skiing operation. But he didn’t want me to meet him because I write a ski column for a daily newspaper or because I work for SKI Magazine. “His wife has diabetes – and she just had a baby,” my friend explained. He went and got the man and introduced us, saying “The baby is two months old now and the baby and the mom are fine.”

Knowing what I know and understanding what I do, I did what came naturally: reached out, gave the man a giant hug and then looked him in the eye and said, “You are my hero. I know what you have been through these last couple of years and I know what you personally did to make this all possible. As the mother of a young woman with diabetes who hopes her daughter some days meets someone like you I just want to say: Thank you.”

The burly man immediately burst into tears. I was, he told me, (a little embarrassed by his reaction; made me think of that Seinfield episode [“What is this salty discharge coming from my eyes?’]), one of the first people to say out loud those words. And while he didn’t want credit (his beautiful daughter was quite enough, thank you), he did appreciate that someone got it. The whole experience had been intense for him, not just his wife.

I tell this story because of the recent push to call those of us in the club I’ve been in for 14 years now – caretakers and loved ones of a person with diabetes – “Type 3’s.” I guess the idea is that we kind of “have” diabetes too. True, it’s with us 24/7. We have to read about it, learn about it, worry about it, battle it, figure it out and sometimes, let it beat us down a bit.

But I’m calling Bull-sh**. I don’t like the term Type 3. I don’t like the idea of us being called anything close to “having” any type of diabetes. Because you know what? As much as the past 14 years of my life have been nearly consumed by this ridiculously complicated disease, there is absolutely no comparison to what it has done to my daughter. And frankly, the idea of “taking” any part of the name seems, to me, somewhat self-serving and whiny.

Here are my reasons:

First of all, whether we parents and spouses and siblings want to admit it or not, we can take time off. Look, I’m a person with absolutely no family help through even the young years of my daughter’s diabetes. Not that my family didn’t care; they did and do. But I’ve never been one of those people with the grandparents who practically live in the house; I never had a family member who totally knew how to take care of my daughter. So it was all on me. But .  . . there was the two weeks of diabetes camp every year when I knew she was safe and I checked out of the diabetes world completely. There were the times I just took a day and went and walked the beach while my husband minded the “diabetes store.” Was it with me always? Absolutely: but not in a way that claimed all my existence. Sometimes I worry that some parents (and loved ones) take too much on personally, and make it too much about them. I remember when my daughter was diagnosed, I said to the endo “I’m going to have to quit my ski job now. How can I travel with this?” To which he said: “You really want to lay that kind of subliminal guilt on your daughter? The best thing you can do for her is LIVE YOUR LIFE. Show her that diabetes cannot completely own anyone. Set the example.” He was, and is, so right.

Second, while there is no question diabetes has etched itself permanently into my psychological and physical being (thank you, diabetes, for the gray hair at 37), in no way has it done that in the way it does to a person with diabetes. My heart may ache sometimes but never will it be actually damaged by the impact of diabetes. I might be tired after a night of crazy blood sugars that concern me; but never will I know what the physical impact of highs or lows feel like. My eyes may be blurry one morning after having to do a check in the middle of the night, but never will diabetes rob be of actual eyesight. In the end, the impact diabetes has on me can be soothed by a long walk on the beach, a support group of good friends who get it, a good hair dresser and – in the case of that burly man I met – a hug and some kind words from a stranger.

Third, I think the whole “Type 3” thing confuses the issue and cheapens it somewhat. For all our hard work on getting the world educated about the difference between Type 1 and Type 2, we’re going to throw another one in the mix? Rather than muddy the waters of public perception, I’d rather clear them up. Do you really want to add having to explain what “Type 3” is to your elevator speech on diabetes 101? I don’t.

I also guess I don’t know why anyone thinks our group -- loved ones and caretakers of people with diabetes -- needs a label. We are who we are. Some of us are warriors in a public way: storming Capitol Hill and demanding funding for a cure. Some of us are master fundraisers who channel tons of money to research. Some of us are quiet, hard-working souls just trying to keep things right on a daily basis for our loved ones. Some of us are burned out sometimes. But none of us “have” diabetes. And if you ask me, if we allow ourselves to be called “Type 3’s,” we are, in the end, letting diabetes have us.

We cannot do that. Because as cliché as the saying is, just like on an airplane, the best thing we can do for our loved ones is take care of ourselves first. Look at that man I met. He was at that party having traveled a few states over for a long weekend away from his wife and new baby, taking a few days away from diabetes to have some fun, let it go and return home refreshed and ready to help his wife with the challenges of nursing and Type 1.

Did getting away from diabetes completely for a few days make him any less of a hero and a man? No more than those poignant tears did.

I say if you need a name, join a group. JDRF. DRI. ADA. Whatever. I just hope we drop this whole Type 3 thing.

*   *   *
Thanks for your perspective, Moira.  What do you guys think of the whole "type 3" thing?  Do you use the term?  Is it on your radar?

April 11, 2011

Guest Post: Setting Sail with Diabetes.

Happy Monday (if such a thing exists)! This morning, I wanted to introduce you to the captain of the sailboat Wondertime - Sara.  Sara has been living with type 1 diabetes since 1986, and she is planning a two year sailing trip with her husband, her two daughters, and Xena the sailing cat onboard. Take it away, Sara!
*   *   *

I was diagnosed with type I diabetes on October 11, 1986 at the age of 11. In October of this year, my 25th living with diabetes, I will sail across the US border into Mexico for several years of traveling with my husband and two daughters aboard our sailboat Wondertime. It will be a time of celebration for sure as our years-long dream is realized even with the challenge of living with diabetes.

My husband Michael and I have been sailing and living aboard various sailboats together since shortly after we first met in 1998. For our honeymoon in 2000, we spent three months sailing up to Southeast Alaska and back to Seattle. Two years later, we sailed down the Pacific coast to Mexico where we spent seven glorious months exploring this warm and delightful country by sea.

Sara and her gorgeous family!

During our first cruise to Mexico, we observed families sailing with their extremely bright and joyful children and simply knew that one day we would do the same. Our first daughter was born in 2006 (pregnancy by far my biggest challenge with T1!) and our second daughter was born in 2008. Soon after our family was complete, we sold our house we’d settled down in for several years, purchased another boat and soon moved aboard. This summer, we will finally set off on our dream of sailing as a family for the next two years, exploring Mexico and Central America, and if we are still having fun, the South Pacific islands.

Of course, there is that diabetes thing.

When I tell someone that I live on a 38 foot sailboat with my husband and two young daughters, at the same time dealing with the day-to-day rollercoaster of diabetes, they often are shocked that we are able to make our life work. Frankly, so am I on many days. If you have diabetes, or love someone who does, you know how all-consuming this disease is. It truly affects nearly every moment of my life in some way. But having close to 25 years under my belt, it is all I know. Living with diabetes makes everything more difficult, whether it is going outside for a walk, shopping for groceries, caring for children, or simply eating pancakes. It comes along with me in everything I love to do, including sailing.

There are many days when I want to throw in the towel, and just live a life that is more routined, with a house and garden and a 9-to-5 job. Diabetes can be so unpredictable that it certainly helps when life is more so. But after all these years I know that this simply is not who I am. I adore boats, sailing, the sea and communing with all the fascinating characters who also spend their lives afloat. I love experiencing the wonder of the sea right alongside my two- and five-year old girls. As one of my favorite sayings goes, it’s not easy, but nothing worth doing is.

Traveling with diabetes is a huge challenge in itself; I will be spending time both at sea and in port. Just like life ashore, I will have to adjust my management tactics regularly, and take it day by day, meal to meal. Cruising by sail is physically active with the sailing of course, but also lots of walking and hiking and taking public transportation. I plan to carry jars and jars of glucose tabs with me. Also coming along will be a year’s supply of pump and CGM supplies (am I excited to have my Dexcom along with me this time!) I’ll check in with my local doctors regularly and visit them when I am visiting local family next year. The best part will be my having my husband with me full time to help; he is truly the most important member of my diabetes team.

I recently asked myself an interesting question: do I sail in spite of having diabetes or because of it? Truly, I think it is both: one of the many beautiful things diabetes has taught me is that life is short and precious and must be spent doing what you love, today.
*   *   *
I love this, and I really love hearing from PWDs who are doing exactly what they want to do, despite any diabetes hurdles that may present themselves.  Thanks for your story, Sara!  Have any of you guys taken extended trips with your diabetes on board?  What are you doing in spit of diabetes, or maybe because of it?

And if you'd like to submit a guest post to SUM, feel free to hit up Abby at abby (at) sixuntilme (dot) com.  She's good with email, unlike me, who tends to suck it up a bit.  :) 


March 22, 2011

Guest Post: Diabetes Alert Day.

Today is Diabetes Alert Day.  What does that mean?  (Here - let the ADA help explain.)  Diabetes Alert Day points a spotlight on type 2 diabetes, encouraging those who are living with type 2 to take control and for those who may be at risk to get tested.  I'm really proud to be hosting my friend Rachel Baumgartel's words on SUM today.  Rachel is a passionate diabetes advocate with a type 2 voice, and you can find her online contributions just about everywhere:  on her personal blog Tales of Rachel, at Diabetes Daily, 'midterning' at Chronicbabe, and participating in the Diabetes 365 project on Flickr

She's offered to post about her own diagnosis with type 2, about being young and living with a chronic illness, and her encouragement to anyone who may be at risk to get tested.  

*   *   *

Often I find myself jealous of people my age who are lucky enough to have one or more grandparents still living and still aware of their surroundings.
Rachel Baumgartel - thanks for guest posting today!
You see, I never knew my own grandparents. Both of my grandmothers passed away before my parents were even married. Both of my grandfathers passed away before I was old enough to notice.

Still, I grew up knowing that both Grandpa and Grandfather lived with type 2 diabetes in the last years of their lives and the condition likely contributed to their deaths. Grandpa, who adopted my father and his brother with my grandmother, took insulin, scaring off my much older siblings when he took out the needle. Grandfather, who never crossed me as being overweight in photographs, took one of the early oral diabetes medications in the 1970’s.

For whatever reason, this family history, both with the genetic connection and without, did not occur to me upon the first warning signs that arrived in the form of spilling sugar in my urine at a routine physical at age 25. Besides family history, I could knock off no fewer than three other risk factors for type 2 diabetes at that point – being borderline obese, exercising less than three times a week, and having borderline high blood pressure.

While I became more active and smarter about food choices after this pre-diabetes warning, I could not overcome an undiagnosed thyroid issue that slowed metabolism to a point where weight loss stalled and eventually caused all-day fatigue, which slowed my activity back down to a minimum. And so I ended up with a type 2 diabetes diagnosis less than four years after that annual physical.

By that time, genetics had made themselves more apparent with type 2 diabetes diagnoses for both my father, whose biological family history was unknown at that point, and my mother’s sister, who struggled with weight. Still, it baffled me how I could be diagnosed at 28 years old while they were in their sixties.  

(In fact, I found much more in common with young adults with type 1 diabetes who were buying houses and building careers than older adults with type 2 diabetes who had mortgages paid off and looking towards retirement. No wonder I am one of the few active type 2 members of the diabetes online community!)

As I grew more conscious of type 2 diabetes and its potential progression, I realized how much earlier this was caught for me with “only” a 6.4% A1C and how much earlier I could make necessary changes so that diabetes may not impact my life expectancy.  I managed to find my inner athlete and learned how to cook some tasty, yet healthy meals.  Six years later, the only change to my diet and exercise regimen has been metformin to increase sensitivity to my own body’s insulin.

Knowing the risk of type 2 diabetes and then knowing if it is time to start screening for it is of utmost importance for prevention of this type of diabetes or to avoid major complications if a diagnosis is made. Lifestyle factors such as weight and activity levels combined with family history and race produce risk levels.  That is what Diabetes Alert Day, a project of the American Diabetes Association, is all about – finding out what your risk might be.

Now I understand that most of Kerri’s readers are people with or parents of children with type 1 diabetes, but perhaps type 2 diabetes does happen to run in your family.  It is still important for you and/or your family members to take this quick and easy risk assessment. After all, while the disease process between the two main types of diabetes may differ, we all end up with the same potential complications that threaten to reduce our life expectancies.

*   *   *

Thanks for posting, Rachel!  And for more information on Diabetes Alert Day, please visit the American Diabetes Association's website.

March 14, 2011

Guest Post: My Glamorous Life.

While I'm attending the JDRF Government Day events in Washington, DC, fellow PWD and mom, Rachel Garlinghouse has offered to guest post here about diabetes, motherhood, and adoption.  I've been reading Rachel's blog and her posts at Diabetes Health for several years, and she's an inspiring writer.  Today, she's writing about the decision to expand her family. 

*   *   *

My life as a mom can be summed up in one word: busy.  While I’m dressing a doll for my two-year-old with one hand, I’m holding a pacifier in my infant’s mouth with the other hand.  My days are full of diaper changes, baths, dancing to “Wheels on the Bus,” preparing meals, washing laundry, coloring, squeezing in a workout, running errands, removing spit-up from the carpet, submitting a new article to my editor, and occasionally taking a bathroom break (usually with my two-year-old next to me clapping and saying, “Yay!  You peed!  Good job, Mommy!”).   

I call this my Glamorous Life.     

I knew from a young age that I wanted to be a mother.  I have worked as a babysitter, day care employee, children’s ministry leader, and nanny.  I taught third and fourth grade kids at a writing camp, and I teach college writing part-time to a room full of eighteen-year-olds. Kids are full of promise and curiosity that is simply beautiful and inspirational.  

Rachel and her beautiful family (littlest baby not pictured)

When I was diagnosed with type I diabetes nearly five years ago at twenty-four, I was altogether devastated and relieved.  On one hand, I finally had an answer to why I was thirsty, exhausted, and emaciated.  On the other hand, I knew I had a disease that had no cure and would require constant monitoring and management…forever.  There I was---young, newly married, and fresh out of graduate school - ready for life’s next adventure: starting a family.  Then diabetes came waltzing in, threatening to dash my dreams.

My first year with diabetes was my honeymoon period---a year of blissfully beautiful blood sugar numbers and easy management. My endocrinologist looked at my A1C and told me I was in a prime season of my life to have a baby.  But shortly after, my body quit producing insulin, and my sugars skyrocketed. I dealt with feelings of failure and confusion, and I knew from researching pregnancy with diabetes, that my body was not prepared for a pregnancy.

I am a classic type A person:  organized, determined, passionate. There was no way I was going to let diabetes dictate my life or steal my dream of becoming a mother. And in my heart, I knew that adoption was the best choice for our family.    

Adoption, like diabetes, is its own world. The process started with an orientation, then a home study (a series of paperwork, interviews, and background checks), then waiting for THE phone call. Meanwhile, we educated ourselves on adoption topics like openness with the birth family, raising children of other races, and answering strangers’ questions.   

I had many fears about adopting, but mainly, I wondered what many diabetic parents do: could I effectively manage my disease while taking care of another human being?  How would I juggle working, taking care of a baby, and keeping my diabetes in check?   

As I was facing my own fears, I was confronted with the fearful, skeptical questions from others.  I was most often asked, “But don’t you want your own kids?” Or, “I know someone who has diabetes and had four perfectly healthy children. So why are you adopting?”   

Adoptive parents, much like people with diabetes, are often challenged by doubts and policing questions from others.  I would usually take a deep breath and then begin a mini-lecture on the potential pregnancy complications a woman with diabetes can face.  People usually got much more than they bargained for when they asked me a question, but I was convinced that adopting was the best choice for our family and so I shared my passion with others.  And I still do.  I blog often on adoption topics and write articles for Diabetes Health online.  I can’t stop talking about diabetes or adoption, because both are major parts of my life.      

Fast-forward to today and you’ll see my family---a dad, a mom, and two baby girls.  My husband and I often joke that our life hasn’t turned out like we planned; it’s turned out better.  Because of my disease, we chose adoption, and because we chose adoption, we have two beautiful daughters whom we are completely in love with.  I’m learning to juggle managing diabetes with parenting.  My life is full, happy, and healthy.

If you are considering growing your family through adoption, I would love to hear from you.  I offer my readers resources, suggestions, and encouragement.  Oh, and a nothing-withheld look at my Glamorous Life as a mommy of two and as a women with a challenging but blessing-filled disease

*   *   *

Rachel Garlinghouse is a twenty-nine-year-old type I diabetic, mother of two, wife, blogger, freelance writer, and college writing teacher.  I'm so honored to be hosting another guest post from here on SUM, and I hope you check out her writing in other places!  (And if you'd like to follow the JDRF Government Day discussions on Twitter, follow the #JDRFGovDay hashtag!)

February 25, 2011

Guest Post: Diabetes Wishes and Cure Dreams.

I met Julie back in Philly a few years ago, and she's vivacious, hysterically funny, and has a great sense of fashion.  (Every time I've seen her, I've coveted whatever dress she's wearing.  Can't lie.)  And I'm really happy that she's offered to guest post today.  Take it away, Julie!
*   *   *

Julie!I am a product of the Leach-effect…  No, not the leech effect that thwarted Gordie and his pals in Stand By Me (but wasn’t that an awesome movie), but the kind Robin Leach use to encourage at the close of Lifestyles of the Rich and Famous with his signature phrase encouraging viewers to have “Champaign wishes and caviar dreams.”

Growing up I would wish for a Barbie Dream House or for those purple jelly shoes that my mom didn’t want her daughter wearing. As I got older my wishes evolved into more substantial things like passing my driver’s test and making the school play.  But after my diagnosis with Type 1 diabetes, the Leach-effect really took over….

I guess it’s fair to say that I’m a practical dreamer; positive in my approach to life; strong in my faith and regular in my prayers.  This – however – has not stopped me from making wishes on the first star I see at night and on every eyelash (and probably a few eye brows) that leap off my face.  And yes, I did set my alarm clock for January 11, 11:09 – so I could be awake to make a wish at exactly 1.11.11.11:11.  And I plan on doing the same thing in November.

But when I woke up to make that wish on Jan. 11, it took almost the whole minute. My wishes have become incredible complex and almost always focus on, or are effected by my diabetes. There is always a disclaimer or specific details I feel the need to incorporate into my complex Leach-style wishes…

Today, as I wished on an eyelash, I started thinking about everything that would have to be addressed to make my wish come true.  This also led me to wonder if I was starting to tick off the granter of the wishes, or if, perhaps, that is why some of these wishes take so long coming true. (BTW, who does grant wishes?  Is it God, the tooth fairy, or perhaps there is a diabetes genie out there somewhere.)

As an example: “I wish everything that needed to happen to assist in a full point drop in my A1c would happen soon, so I can get this under control and get on with my life.” Not a simple wish; not a simple reality.  Here is what it took for that wish to come true: my husband’s company relocating, him finding a new job, selling our house, moving to a new city, getting new insurance and a new healthcare team, finding another new endo (‘cause the first one was a putz), getting a new pump and CMG, more than a thousand hours of training, finger sticking and carefully monitoring my food, exercise, stress, activity, medicine, and a whole bunch of other stuff you’re even less interested in.

I’m not making wishes, I’m trying orchestrating the world with my wishes!  No wonder the wish genie’s annoyed! 

Of course, my A1c did come down a full point eventually and then some…  And you know how that goes…  I’m on to new wishes and happier dreams. And now, when I’m closing my eyes, and exhaling with all my might, wishing for …  well I can’t share that or it won’t come true…  but it’s a good one and 65 words long! (Yes, I typed it out, did a word count and deleted it.  So what?  It’s my wish… ) I won’t stop wishing for it nor will I leave a detail out.  I believe this wish can come true; so many in the DOC have proved that to me…  And I know it’s going to take a lot more orchestrating and world moving to find a sustainable cure – but I know that’s a wish we’re all making and expecting to come true, as well.
*   *   *
Thanks for posting today, Julie!  And how about you guys - what are your diabetes wishes??  (Aka, how do you annoy "the wish genie?"  ;) )

February 24, 2011

Guest Post: Confessions of a Caregiver.

I'm doing some traveling this week, and I'm really grateful to have some wonderful guest posts on tap for while I'm away.  Today, Tamara from T1 Family offers up her story.  Tamara is the wife of a person with type 1 diabetes, and also the mom of a CWD.  (And she's a family physician, to boot.)  I'm really proud to be introducing her to the Diabetes Online Community - please give her a warm welcome!
*   *   *

Thank you, Tamara, for guest posting today.Sometimes I sneak to the garage and eat Skittles -- they are for my daughter's lows and the only candy in the house.  Other times I have wondered "why me?"  But, most of the time I am so incredibly thankful.

Before the year 1922, insulin did not exist.  Back then, I would not have had the chance to meet and fall in love with my wonderful husband, a Type 1 diabetic.  I would have been forced to watch my beautiful, sweet 7-year old daughter slowly die before my eyes, as a result of her own Type 1 diabetes.

I remind myself of this multiple times a week as I spend hours meal planning, grocery shopping, preparing food, checking blood sugars, changing sites, empathizing with my T1 daughter that having diabetes stinks, trying to spend adequate time with my non-T1 daughter, communicating multiple times a day with the school nurse ... all while working as a Family Physician which is in fact my paying job.

I have discovered being the caregiver is a fine balance between nagging, enabling, and empowering.  I'm not sure I've got it quite right yet.  And, having an almost 40-year old and an 8-year old to care for are two very different things.

The 40-year old has been diagnosed since right before he turned 18.  He is an inspiration.  He finished med school, became a family doc as well and is an amazing husband and dad.  But, he's not always an amazing diabetic.  And, who could blame him, really?  I truly cannot imagine what it feels like to have a pancreas that doesn't work. As hard as my job is, I get breaks.  I can sneak the Skittles in the garage without having to worry about all the short and long term effects if I don't dose the insulin just right.  He can't, and maybe denial is the coping mechanism that is only natural.  And, so he has me reminding him "that always makes you high... did you check your blood sugar?  Are you high? Are you low?"  It must be exhausting to him.. it is to me.  But, diabetes doesn't take a break.  It is there 24/7.  And, I love him and want to grow old with him and so I nag.

I try to empower and support, and at times I clearly enable.  And, I get frustrated at times.  I make him a lunch... the carbs are clearly labeled on the bag... and then I find him snacking after lunch with handfuls of chips.  What was the point, I wonder?  He's going to be high anyhow now.  Why did I bother to measure the lunch?  I might as well have just sent him with a big scoop of pasta and label it "take your best guess!"  At times I feel angry.  At times I feel scared.  But, I continue day by day trying to be as supportive and helpful as I can, all the while trying not to drive him nuts with my nagging.

But, then on October 7, 2009 my sweet 7-year old baby girl was diagnosed.  She has a fraternal twin, my only other child who thankfully does not have it (yet?).  What a different playing field.  Initially she needed me to do everything, all while my heart was broken and my world shattered.  I held her down screaming while I gave those first shots.  I had to -- I would not let diabetes win.  I told her "no" more times than I could ever count that first year.  No, you can't have chocolate milk.  No, you can't have a brownie.  Oh, and by the way, diabetes can't stop you.. you can still do anything.  But, you can't have that chocolate cake that the other kids are eating.  In case you haven't guessed my T1 daughter is a HUGE chocoholic.

As instructed I kept her on the rigid prescribed carbs with every meal.  I became the food police in ways I had never, ever been with my husband.  I had to re-learn to shop, re-learn what to feed my daughter, forget what it felt like to get 7-8 hours of solid sleep.  Instead of enjoying her school plays, I sat paralyzed in the audience.  What if she gets low?  I couldn't help but have times I looked at my friends -- why me?  But, then I would realize it truly is why not me?

We all have our life story.  Perhaps this was always meant to be mine.  I am a caretaker at heart.  I chose a healing profession as I love to help people and encourage them to take care of themselves.  I wasn't dissuaded in the least when I found out my now husband had Type 1.  We'll deal with it, was my attitude.  I always worried that my children might get Type 1.  The odds are so small, but I worried.  I remember beginning to read Cheating Destiny and being unable to continue when he described his son's diagnosis.  But, one random day in October my daughter was thirstier than she had ever been, and a new phase in our journey began.

And, now there are two of us with working pancreases and two without.  Some days I look at my non-T1 daughter and wonder: is it starting?  Has the process already begun?  Will I soon be the only member of my family without T1?

But, none of us know our destinies.  I do know I will rise to the occasion.  I will handle it.  I will take care of my family, working pancreases or not.  I'm a mom.  That's what we do.
*   *   *

Tamara, I am only beginning to understand what being a mom means.  Thank you for such a moving post, and for taking such good care of our fellow PWDs.

February 18, 2011

Guest Post: Get Your Opera On.

Opera glasses.  Also known as fancy binoculars.When Michael Park emailed me about the opera he was writing that centered around diabetes, I couldn't say no.  Because, aside from picturing him wearing a giant hat like this while he emailed, I also loved the idea of a musical version of life with this crappy disease.  Michael, a fellow person with type 1 diabetes, is looking for some input from the DOC for his amazing project, and today he's guest posting about the how, why, and whoa of his diabetes opera ambitions.  

To get involved, check out his call for submissions! 

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As Kerri's tagline implies, we are all more than our diabetes, but it's fascinating to think about the role diabetes plays in how we define ourselves. Lately, I define myself first and foremost as a composer. Nevertheless, I spend so much time thinking about diabetes, that I would feel insincere trying to hide it. Like it or not, growing up and living with diabetes shapes who we are. As an artist, I feel compelled to explore that influence through my creative process.

The music I write is about experience – the experience of writing music is never the same from piece to piece, I constantly think about the experience a performer will have with my music, and finally, I want the audience to experience more than just a succession of notes.

I think it's only natural for artists to want to explore their own experiences, so for years I've been looking for a way to musically portray diabetes. Specifically, I don't want to write songs about diabetes, rather, I want to bring the experience of diabetes to life. This is not the first time I'm approaching a medical condition through music; in fact, one of my most successful pieces brought another condition to life through music.

After watching my grandmother go through and ultimately succumb to Alzheimer's Disease, I was inspired to write a set of piano pieces that I called the Alzheimer's Variations. I wouldn't have been satisfied paying lip service to the disease by just slapping on a title or dedication. I needed to write something that brought both my grandmother and the disease to life as a piece of music. I did things like asking the performer to actually make mistakes - involving them as an actor, not just a pianist.

After I finished writing the piece, I doubted myself, “what if this is just self-indulgent drivel?” Thankfully, my fears were silenced. After the performance, the pianist described how powerful the experience was for her; she felt that she understood what it was like to go through the stages of Alzheimer's. I had audience members come up and thank me for perfectly encapsulating what they had gone through with their own loved ones.

If you can spare about 11 minutes and want to listen, please go here.

As it's been mentioned all over the diabetes blogosphere, diabetes is an invisible illness, and the things I want to illuminate about type-1 diabetes can't be shown in a straight forward way. Can you imagine the headlines if I tried to portray it like I did in Alzheimer's Variations...

New Opera 'Hypoglycemia': More Like 'Stage Full of Drunks'
or
Carb-Counting Songs: Man Stares Blankly Before Biting a Dinner Roll

Instead, what I have in mind is an opera with three main characters: Charlie (accompanied by his parents) is a young boy, newly diagnosed with diabetes; Heidi is a professional woman, obsessed with maintaining the tightest control over her condition; and Frederick, early in his retirement, struggles with complications developed over a lifetime with diabetes. The opera follows their stories through interactions with their Endocrinologist, nurse educator, dietician, waitress, and friends.

While I have a starting point and loads of ideas, I need the help of the diabetes blogging community. If you've ever read or written a blog, please go here to see how you can be a part of what promises to be an incredibly exciting project!

Considering this project will be a while in the making (as part of my doctoral studies in music), I'm trying not to let myself get carried away, BUT I've gotten nothing but support and excitement from everyone I've talked to so far! There's a summer opera program that wants to workshop a scene or two this July, and that means I need to get cracking! I hope to get as many story suggestions from the blogging community as possible within the next month – that way I can get some good writing done for the summer, get some musical feedback, and hopefully have a video recording to use for promotions and gathering further support for the opera.

By starting with real-life stories from the blogosphere, I see this opera as an opportunity to try and define the diabetes experience. While many of us avoid defining ourselves as diabetic, I put this forward as an opportunity to define 'diabetic' as ourselves – both as individuals and as a community.

*   *   *
Thanks, Michael!  I love this idea!  (And it seems like Michael is not the only one with the desire to put the D to music!)  I am looking forward to updates from you on the progress of your project, and I hope the DOC helps you create something gorgeous.  Click the PDF icon to view the submission guide!

February 10, 2011

From Abby: Standards of Care.

Note From Kerri:  Lows suck.  Larry Bird blood sugars shouldn't be making appearances in the wee hours of the morning.  And not waking up right away for these kinds of lows can be terrifying.  Abby (the Person) writes about a low that left her reeling and the superhuman strength of her wonderful mom.

*   *   *

8:00pm – 276 mg/dL (no idea why)

10:30pm – 288 mg/dL (negative ketones, and the correction bolus that ruined everything - give me a minute to explain)

12:00am – 120 mg/dL (3/4 bolus for a snack, and to bed I went)

1:45am – 33mg/dL (awesome)

I know why this happened. When I took that second correction at 10:30 pm, I thought to myself, “I might go low from this, but I feel like crud, and I’ll just eat a snack before I go to bed.” And so I did: a very small bowl of Raisin Bran cereal, only bolusing for 3/4 of it, and off to bed I went with a blood sugar of 120 mg/dL, feeling like I avoided that low.

Feeling pretty dia-successful.

When I woke up at 1:45 am feeling a little warmer than usual, but with no other symptoms, I decided I should probably check. Moms are badass and can lift like a million times their own weight. Ants are cool, too.

33mg/dL. (Editor's note:  Whoa, Larry Bird) 

Defeated. You win tonight, diabetes. A 6oz juice and a 19g granola bar later, I lay back in bed. And that’s when things got scary: seeing stars, extreme sweating, nausea, crying (which is new to me, and frankly I’m not a fan). I grabbed the glucose tab bottle, and obviously it was brand new and had that cannot-open-without-a-chain-saw plastic thing under the lid.

By this point I was freaking out. I stumbled into my mom's room (yes, I’m 23 and I live with my mom; times are tough, people and I’m a full time college student with two jobs, don’t judge me) where she saw the tears and the shaking hands and presumably my face sans any sort of color. She grabbed the bottle and ripped the plastic off with that “my daughter is in danger” sort of strength that I still don’t understand. All I could manage to eat were three glucose tabs.

I really thought I was going to die, like straight up fall on the floor (only with a blood sugar probably in a safe range at this point) and just die. The re-check showed me a 66mg/dL. Then I got really frustrated because I was almost back in range but I had EVERY low blood sugar symptom on the face of the earth, only on steroids. (For some reason updating my Facebook status and texting a few friends at this point seemed like a grand idea.) This is not the first time I haven’t woken up until I was under 40mg/dL. I’m sure it won’t be the last, thanks to my lack of a continuous glucose monitor. Actually, I take that back … I have a CGM, but I hate it. I try it at least once a month, I do everything by the books, and if I get one or two readings that are within 20 points of my finger stick, it’s a miracle. I’ll be starting a 7-day-trial of the Dexcom soon, and I already have an email into my endocrinologist asking her for one of my own.

The point of my story is to ask this question:  Why aren’t CGMs a standard of care for diabetes? I bet if I asked my friends who have diabetes for similar stories, I’d get a boatful.  (Then I would send that full boat to insurance companies and ask them if they’d rather dish out a few hundred dollars every month for their patients to have sensors and stay safe, or keep refusing us, keep making it a huge hassle to achieve safety, and instead keep sending me 87 million boxes of test strips that expire before I even think about opening them.) 

The technology is here, but there is clearly nobody working for those insurance companies that knows the first thing about the fear I’ll have when trying to fall asleep tonight.

*   *   *

What makes me nuts is that people who want and need a continuous glucose monitoring system still can't find coverage through their insurance companies.  We've come such a long way, technologically-speaking, and it's frustrating when a fellow PWD can't readily access that technology.  What insurance battles are you fighting?

February 03, 2011

Guest Post: Roommates.

Today, I have the honor ot posting a guest post from Kim at Texting My Pancreas.  I'm not going to lie - Kim is one of my favorite new(ish - she started blogging last year in June) diabetes bloggers and her posts made me grin and think, all at once.  (Which makes for a weird looking grimace, but that's okay.  I really enjoy the reads.)  Thanks for posting, Kim!

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Kim at Texting Your PancreasI have one of the worst roommates ever.

At least, that’s how I like to think of diabetes and I. We might both live in this body, but I was here first - which means I get the final say on things like decorating, and whether or not we should make room on the DVR for Glee.  (Answer: “Yes, of course”.)  

On most days, I can accommodate my roommate’s eccentricities. He’s easily offended over some of the foods I really enjoy (like breakfast cereal and delivery pizza), and I try to respect that. He’s introduced me to some pretty great people over the years, though I’m not sure he realizes that they don’t hold him in very high regard. He can be a good motivator when the mood strikes him, and I often like to prove to him that he isn’t always the boss of me. (See also: doing my first half-marathon last year.)

However, if you live with the same kind of roommate I do, you know that he also has a darker side. There are nights diabetes has kept me up on an all-night juice bender; stumbling down the hallway and sweating through my pajamas. He’s left me stranded, far from home, with a deficit in both blood sugar and glucose tabs. Diabetes doesn’t have much consideration for timing - he’s happy to barge in on holiday celebrations, job interviews, school exams, and even weddings. He can give you a pretty epic headache, steal away your patience and rational thinking, and leave unsightly blood stains on your favorite shirt. Diabetes is a jerk, like that.

Given all this, you can understand why living with diabetes wasn’t a situation I felt comfortable with in the past.  At least, it wasn’t until I found a whole mess of other people online who, it turned out, knew exactly what this is like. They, too, were roommates with this unpredictable and moody rascal. The burden of living with diabetes started to seem less heavy. Truthfully, I hadn’t realized just how heavy it was until I found I wasn’t the only one carrying it around.

Though I haven’t been blogging for very long, I’ve quickly found that sharing my story - and making fun of diabetes whenever possible - is an integral part of keeping myself healthy. Writing about the good, the bad, the funny and the frustrating - and finding that others share those same experiences - helps me validate the concept that I’m not alone in this. Feelings of isolation get replaced with connection and camaraderie. The act of living with diabetes became a “team sport”, which helps me feel eager to suit up and tackle it each day. It’s also handy to have folks around who can answer questions like, “Where, exactly, on my thigh should I put an infusion site?”, and “Do I really have to pull my Dexcom sensor after seven days?”.

Diabetes: you may be a horrible roommate, but you’ve introduced me to some wonderful friends, and for that I can be thankful. 

We’re all anxiously awaiting your eviction notice, though, buddy.

*   *   *

Thanks for the great post, Kim.  And by the way, I wear my Dexcom sensor on the outside of my thigh. :)

January 25, 2011

Guest Blog: #hcsm and a Prescription for the Health Care Industry

Today I am very proud to be hosting a guest post from Dana LewisDana Lewis is an interactive marketing specialist at a non-profit health system serving the Greater Seattle area. However, her tweets and thoughts (ranging from #hcsm to gluten-free cupcakes and elephants for BSparl) are always her own. She has had type 1 diabetes for eight years, celiac disease for two years, and is a fierce advocate for the idea that people with chronic illnesses are people first - and that no one deserves to be labeled by a disease.

Dana created the #hcsm chats on Twitter back in January 2009, and the online discussion has engaged and inspired hundreds of patients, doctors, and health care professionals alike.  She's offered to share a little bit of her story, and I'm looking forward to seeing how far her passion for #hcsm takes her!

*   *   *

Dana Lewis:  BSparl's favorite long-distance baby sitter.  :)It's hard to understand the power of health care in social media until you experience it first hand. For those of us with chronic illnesses, it's a no-brainer to seek and find support from individuals (and groups) online. But two years ago, the concept of using social media for any purpose in health care beyond patient to patient support was foreign to the greater health care industry.

I'm obviously biased, but I believe the creation of the weekly #hcsm (health communications & social media) chats online played a role in helping social media become more adopted in the health care world.

#hcsm was the first regular health care hashtag and chat, which quickly evolved into a well-established community. Although I'm not a blogger, I am an avid lurker in the DOC and often experience the numerous and varied benefits of health care & social media first hand. As I began working in health communications, it seemed natural to explore social media further to learn from others established in the field. Thus, #hcsm was born simply out of a desire to have an ongoing conversation about social media in health care.

Fast forward to today - #hcsm is a growing, vibrant community with global health care impact. #hcsm has several "sister" chats in Europe, Asia, Australia/New Zealand, Latin America, and more. Social media in health care is becoming mainstream, or at the very least explored regularly, around the world.

However, the principle of #hcsm is removing the barriers so that students and established professionals can all learn from one another; so that doctors and patients can understand each others' motivations and obstacles to communication; and so that in the end, we're making a difference in health care.

While social media in health care has come along way, there are still basic elements of health communication that need to be fixed. My blanket, non-medical prescription for anyone, whether they are a doctor or patient, includes:

1. Do not label any individual or group by their disease. Call yourself what you will, but don't force a label upon another individual. We don't accept labeling in our society by gender, age, race, or ethnicity - why should we allow discrimination by disease?

2. Realize that not all patients are the same - each have different motivations, and each have a different health care (and life) experience. People don't (usually) choose to be "sick" or "ill"; we didn't ask for type 1 diabetes - we just happen to have it. Regardless, we're people first and patients second.

If you could add an item to this prescription list for the health care world (after a cure for diabetes & other diseases), what would it be?

*   *   *

Thanks for posting, Dana!  (And BSparl says thank you for all of the elephant fun treats!  We are working on animal sounds and so far we have "meow" for kitty and "pffffft" for elephant. /sidenote)

January 12, 2011

Guest Post: Pump Vacations?

In the midst of a very brief pump vacation myself (more on that later), Moira McCarthy's guest post today really resonated for me.  I know if I told my mother (or my husband, for that matter) that I wanted to take a break from pumping, they'd read "burnout" in that admission.  But sometimes deciding to take a break from certain diabetes things is the opposite of burnout - instead, it can be a sign that a PWD is trying to regain control, bit by bit.  

Thanks for guest posting today, Moira.  Your perspective is invaluable.

*   *   *

The lovely Moira.  :)My college-aged daughter, who has had diabetes since Sesame Street was still a viable TV option, came at me with some big news the other day. She was going to go on shots. Shots, the evil, ruin-my-life treatment plan that I spent the first year of her diagnosis hating, fearing, chasing lows on and basically, feeling like it owned my life.
 
Now, let me say up front: I get it now. Shots have changed. There’s Lantus, for one (I think of NPH as the evil empire of diabetes, sorry), there are cool pens you can tuck away; there are all kinds of plans that make it a snap (well a snap in our D world. The rest of the world would freak out). But I had to think to myself; why the H*** would anyone choose shots over a pump?
 
Here is where mommy’s ego enters. My daughter was one of the very first young children to go on a pump in the Boston area. I did it with the help of on line friends (Thank you Ellen from kidsrpumping). I did it because it just seemed right to me. And okay, I did it so I could be that ultimate superhero: the Champion Diabetes Mom (CDM from here on it). CDM finds the newest and the best. CDM knows not only every type of insulin on the market and their peak patterns, but she can create a few fun anagrams from their names (Hey – who said diabetes can’t be fun?) I was that mom. I want to still be that mom.
 
My daughter was among the very first kids in America to use a CGM (she even used that horrid big one until the smaller one came out). No, she’s not on it now but that’s another discussion (see guest post on teens and freedom at DiabetesMine.com. Ha, ha, ha. And yes, that was a fake laugh). So for the most part, for the going on 14 year’s we’ve been at this, we’ve been trail blazers.
 
But my daughter is in college now. I need to preface this with good news. Despite my endless worries and almost insane fear of the unknown, she came home with a good GPA and a great A1c. Well, not great, but down three full points. Who does that their first semester of college? There were no ER visits, no fearful calls from friends. Sure, she had a few bad days but for the most part, she aced her first semester of majoring in Communications, politics and life with diabetes without the CDM over her shoulder.
 
So just before her endo visit she breaks it to me: she wants shots. She’s tired, she says, of the pump being attached to her (in fairness, other than when she was in the water during a swim meet, in the shower or in the time she was in denial over diabetes, it’s been connected to her body for 12 years. That’s a long time). This has nothing to do with tubing and everything to do with being connected to a disease. A “pump break” as she put it would give her a chance to breath, do something different and just take a break from LOOKINg at her disease 24/7.
 
I’m proud to say CDM kept a straight face. I didn’t react. I tried to just say “that’s cool.” But I suspect I did it in the same way I thought I was being cool way back when a bg of 450 and some ketones would completely freak me out. “No, honey, it will be fine,” my lips would read. Years later in counseling she confessed my eyes said “OMG you’re going to die and you’re going to die now.” Some fake outs take practice.
 
But here’s an interesting thought. I know everything there is to know about the pump. I can function it. I know basals. I was always the one who helped tweak it. When she steps into shot world this week, I won’t know squat. I have to wonder: is this a plan? Is the best thing for my awesome daughter for CDM to take a step back and let her learn to stand on her own? I know there is going to come a time when she goes back on the pump again. I need to know, too, there is going to come a time when she wants my input, advice and help on diabetes. But smart girl she has always been and always will be, she must know in her heart that CDM has to cease to exist. She’s moving toward being that adult PWD. I need to embrace it. And train my eyes to say otherwise.

*   *   *

As parents or caregivers of people with diabetes (CoPWD), do you want to keep your kid pumping/CGMing/technology'ing as much as possible because you think it's for the best?  As PWDs (or CWDs), do you sometimes need a "less is more" approach to diabetes management?

January 11, 2011

Guest Post: Type D Personality.

Jacquie's writing makes me laugh, makes me smirk with recognition, and makes me think.  You can read her blog over at Typical Type 1, and she's also written here before about diabetes and jury duty.  And I'm thrilled that she's agreed to guest post here again, this time writing about the "Type D Personality."  Take it away, Jacquie!

*   *   *

Jacquie, blogger at Typical Type 1I often hear it (or read it online) from others who are living with diabetes: “I'm a control freak. Diabetes made me this way.” Non-diabetics expect the same from me, it seems. They’ll make statements like, “You must be super-disciplined to take care of yourself that way.”

I wish the above statements held true for me, but they are as distant from my reality as humanly possible. In fact, I'm so far away from a Type A personality, I'm barely in the alphabet. Yes, I do my best to keep myself healthy, but I would say that -- as far as self-discipline, ambition and organization go -- diabetes self-care has emerged as my singular talent.

If there is one thing that twenty years with diabetes have taught me, it's that control is mostly an illusion. Sure, I can manage my blood sugar -- count carbs, test basal rates, correct for highs and feed the lows -- but I'm never completely in control. There’s always the possibility that a rogue hormonal surge will send my numbers skyward for an afternoon, or that I'll get a kink in my pump tubing, or that the bagel I had for breakfast wasn't as carb-crazy as I bolused for. And really? I have no choice but to be okay with that. Anything else would drive me even more insane than I already am.

Maybe it's because I expend so much energy on pharmacy trips and cereal measuring that I don't have much left for dusting and bed making. (And, you know, consistently getting to work on time and folding my laundry.) Or maybe the idea that life is inherently uncontrollable has influenced the way I look at everything from unmatched socks to insurance paperwork. With diabetes management, as with a million other things, we can only do our best, and we can only exert control over a few factors.

Of course, it’s possible that I was always destined to be a messy-desk-having, socks-on-the-floor, nap-taking slacker, and that diabetes has nothing to do with it. But I’ll take a life lesson from diabetes – or blame a personality flaw on it -- any time I can.

*   *   *

Does diabetes give your life structure?  Would your life have the same structure if you didn't have diabetes?  Or is this one of those diabetes "chicken and the egg" questions?

December 29, 2010

Guest Post: Why I Always Carry Glucose Tabs.

Today I am wicked (wicked!) excited to have my friend Karen guest posting.  (And I love her post.  The mental image of the buttons made me laugh out loud - you'll see when you get there.)  And once you're done reading, be sure to visit her Bitter-Sweet blog to read about the T1 Adult Outreach Program she's spearheading!

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Karen of Bitter-Sweet fame!Quite a few years ago my husband Pete and I met up with a group of friends and hopped on a train to spend the day in New York City.  We went to Rockefeller Center to watch skaters glide around the ice in front of the huge Christmas tree.  We went to the Tkts booth to score half-price Broadway tickets and saw a show.  We walked uptown to see the unbelievable toy displays at F.A.O. Schwartz.  By the time we made our way to Central Park all of the activity started to catch up with me.  I could feel a major low coming on.  I reached into my “smaller-than-usual-day-in-the-city” purse and realized I had overlooked a very important item when I was tossing in the stuff I needed that morning. 

I had overlooked my glucose tablets.

It seems almost unthinkable that I would head out to traipse around the city all day without having something with me to treat a low.  It’s not like I was new to the diabetes thing – I was diagnosed in 1979, for goodness sake!  But as we all know, life (and stupid oversights) happen.  I certainly am not perfect.  And let’s not forget that it wasn’t like I was on some secluded desert island.  I was in The Big Apple, where you can buy art-work and pashminas and sunglasses and purses on any street corner.  And more importantly, you can buy a large variety of food and beverage items from those street corner venders too.

So at the first food cart we came across in Central Park, I bought a small carton of orange juice at an over-inflated NYC price.  My friends sat on a bench with me and I quickly drank the juice down, barely noticing the taste.  I waited for my blood sugar to come back up but instead of feeling better, I started to feel worse.  My stomach and the juice didn’t seem to want to make friends.  I felt terrible and I’m sure I turned positively green!  At that point, Pete and I sent my friends along to finish their day in the city while we headed back to Grand Central to take the next train home.

New York City during the holidays is magical.  New York City during the holidays when you’re dealing with a seriously queasy stomach is not.  The ringing of bells, the bustle of shoppers and the honking of taxis were pure torture as we made our way down the crowded streets to the train station.  I tried to be a trooper and I took deep breaths of cold air and told myself I would be fine.  And I was.  Until we turned the corner to Grand Central and my stomach couldn’t take it anymore.

And there, under a huge red bow tied to a street light, I barfed all of the Central Park vending cart orange juice into a city garbage can.  I’m sure I was quite a sight, especially since each retch caused buttons to pop off my pretty cream-colored coat and shoot down the sidewalk.  I was mortified.  I told Pete that I was sure passers-by must have thought I had too much alcohol rather than a spoiled carton of juice.  (Although Pete wisely pointed out that it was New York City, where it takes more than a girl losing her lunch - and her coat buttons - in a garbage can to raise an eyebrow!)  My stomach calmed right down once the rancid orange juice was out of my system, but it was still a long and exhausting ride home.

And that is why, from that day on, I ALWAYS carry glucose tablets.

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Thank you for guest posting, Karen, you NYC-garbage-can-puker, you.  ;)

December 22, 2010

Guest Post: Diabetes in Spain.

If there's one regret I have, it's that I didn't take advantage of the study abroad program in college.  My first trip to Europe wasn't until last year, when Chris and I visited Barcelona for the filming of Buried.  

But thankfully, some college students do manage to fly across the pond and literally broaden their horizons.  Melissa Moulton, a staffer at CBC and PWD of ten years, is spending a full year living in Spain.  She's offered to share some of her stories about managing diabetes while living abroad her on SUM, and I'm really pleased to be hosting her posts.  Take it away, Melissa!

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Melissa is awesome.Instead of getting on a train and going to Hogwarts on September 1st of this year, I went to JFK airport and got on a big scary plane and flew across the Atlantic to Madrid, Spain.  In place of doing the more common one semester study abroad program, I somehow decided it was a good idea to live in Madrid with a host family for the entire academic year.  This decision meant leaving my cozy liberal arts college for a bustling, unfamiliar city.  Add in type 1 diabetes and gluten intolerance and this incredible experience is bound to get a little more complicated.

Once my incredible summer working at CBC ended, it hit me that I would be leaving the country in merely two weeks.  I spent the days counting test strips, spending time with friends and family, and most of all trying to remember how to speak Spanish.

Then about a week before leaving I met with my endo and we talked about getting a Dexcom.  And because I just love to be stressed, I decided to peruse getting a Dexcom before leaving… in one week.  Somehow Dexcom and my insurance company pulled it off and I didn’t even have to verbally assault anyone in the process—win-win, in my opinion.  Getting a Dexcom has proved to be one of the best decisions I think I have ever made in regards to my diabetes.  It has really made living far away from friends and family, who know the nitty-gritty of diabetes, much easier.   
    
Fast forward to meeting my host family: I sat jet-lagged and overwhelmed at the kitchen table with my new “host mom” and attempted, in lovely broken Spanish, to tell her about diabetes and eating gluten free.  I managed to convey the basics, but for just about everything else we ended up reading Spanish Wikipedia articles (explaining autoimmune diseases in a foreign language for dummies?).  In retrospect, it probably would have been a good idea to figure out how to talk about diabetes in Spanish before leaving, but I guess I was too preoccupied deciding which dresses to bring, or something like that.  Oh, and it’s a good thing the word “gluten” is exactly the same in both languages.   
    
Though this has been an incredible experience so far, I think one of the things that has been most difficult for me has been that lack of diabetes (not to mention red hair and freckles) here in Spain.  It’s almost as if the disease doesn’t even exist over here!  We all have experiences running into a random stranger in the grocery store with a pump or seeing a stray test strip hanging out on the floor of a public restroom. However I haven’t seen any of this: not a pump, not a random person wearing a JDRF walk t-shirt, nothing. I went from having an entire network of people with diabetes only a text message away, to a world where diabetes is something nearly unmentionable.  I’m still hoping to come across some diabetes in public, but at least I’ve realized that with a little effort, overseas communication isn’t all that difficult (thanks technology!)  

Despite the occasional "diafail" and one very scary Spanish endocrinologist (think massive mahogany desk, fifteen foot ceilings, a large mustache, and no knowledge of diabetes—at least I only needed a prescription), I’ve definitely managed to live life in Europe to the fullest and learn a heck of a lot of Spanish.  Oh yeah, and I still have six months to go!   

*   *   *

Thank you, Melissa!!!  I'm excited for your next update!

December 07, 2010

Guest Post: Facebook Isn't Just About Tending Your Crops.

Manny Hernandez isn't just a "friend" on Facebook; he's my friend in "real life," too.  I've always admired his dedication to improving the lives of people with diabetes, and how he uses social media to bridge the gaps between diabetic communities.  Which is why I'm very happy to have him guest posting here today about his Facebook diabetes management game, HealthSeeker.

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Manny Hernandez and his hatOn Facebook, You Can Also Play to Manage Your Diabetes!
Let’s face it: Facebook is a giant. More than 550 million people in the world use it for keeping up with friends and family, to stay informed, and to be entertained.

At the end of 2009, seeing this trend and realizing how many people on Facebook were playing so-called social games (FarmVille is just one example of these), at the Diabetes Hands Foundation (DHF) we thought we should develop a game on Facebook to help with diabetes management.

With the sponsorship of Boehringer Ingelheim Pharmaceuticals and in collaboration with Boston-based Joslin Diabetes Center, we began to shape  a new game called HealthSeeker. The game saw the light of day in June 2010, when it was launched in English at www.healthSeekerGame.org. The game was launched in Spanish during the month of November (si quieres jugar HealthSeeker en Español visita www.ExplorandoTuSalud.org).

HealthSeeker offers players suggestions to help them improve their lifestyle and nutrition, to better manage diabetes. As a player, you can invite your Facebook friends (actually, it is more fun to play alongside them): they can become sources of inspiration and motivation as you move through levels.

The game tackles two of the risk factors associated with the incidence of type 2 diabetes (though people with type 1 diabetes and all people who simply want to live a healthier life can benefit from it too): the lack of physical activity and the not-so-healthy eating habits we sometimes exhibit.

How does HealthSeeker work?
The game motivates players to take on simple daily challenges, such as switching from wheat to white bread or walking around the block after lunch, in order to help them reach their lifestyle goals.

The lifestyle goals include healthier eating, reaching an optimal weight, improve your diabetes management and reducing the risks of heart problems. HealthSeeker, the diabetes management Facebook game!

The game contains missions and actions that the participants choose. These need to be completed in order to progress. The vast majority of the actions are completed in real life, not in front of the computer. This makes sense considering that we don’t really burn too many calories when we’re not moving anything but our fingers on the keyboard. :)

As players complete actions and return to the game to inform about their progress, they receive awards and points for their achievements and their Facebook friends can give them kudos. Players can also share their accomplishments on their Facebook wall, through Twitter or challenge their friends complete the same missions and actions. This is part of the viral character of the game and is what makes it that much more fun to play alongside your Facebook friends.

As of today, more than 5,000 people are playing HealthSeeker and we look forward to receiving more players. The game is available free of charge, in English at www.HealthSeekerGame.org (en español a través de www.ExplorandoTuSalud.org)

I look forward to seeing you and your Facbeook friends playing soon to take simple steps to get healthier together!

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Manny Hernandez (@askmanny) is a nonprofit executive, social media author, and consultant and a diabetes advocate. He is the President of the Diabetes Hands Foundation (DHF) and the founder of www.TuDiabetes.org (in English) and www.EsTuDiabetes.org (in Spanish).


September 28, 2010

Guest Post: A Recipe for Inspiration.

Today's guest post comes from another Barton Camp alum - Savannah.  (And, for the record, I first met Savannah by seeing her name over and over and over again on the Boathouse walls.  I had to meet the girl who had gotten her name up on the beam over the door.)  She's living with type 1 and is also a self-proclaimed artsy-fartsy type, and I'm happy to have her guest posting about finding inspiration. 

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Savannah guest posts today on SUM.  Thanks, Savannah!!Though sometimes I might like to think it, diabetes doesn’t physically affect just my pancreas. Depending on my blood sugar, it affects anything from my ability to feel my body, to my emotions and coherent thoughts – basically anything from my head to my toes depending on the day and mg/dl. Hence, not surprisingly, it also has a large say in how successful (or not) my artistic endeavors turn out to be.

It’s pretty safe to assume that everyone has experienced the car crash known as god awful singing at some point – most likely multiple points – in their lives. Whether your congested friend is belting, “If love is a labor I’ll slave till the end” during a late night drive home, or your strep throat, metal-in-a-blender, voice makes passerby cringe as you drive around in your convertible, it happens to the best of us. And even though no one (well, no normal people, at least) can quite hit those blasted high notes in “Happy Birthday” it’s still frustrating, especially when you’re in one of those slap-happy, sing-songy moods where all you want to do is dance around the house and sing at the top of your lungs (and be the recipient of your neighbors', who are playing golf outside in the backyard, looks).    
To me, what’s even more frustrating is singing (when I’m really inspired – usually between the hours of 1 and 4AM) with ketone-breath – what I call that dried out, spongy, sugar-coated, just heavy cotton-mouth feeling my mouth and tongue get when my blood sugar is, let’s just say, not below 300. Ironically, it is quite hard to hit the right tones when you’ve got the ‘tones, and high blood sugar + inspiration = time to whip out the audio editor.

Now, I’m no superstar singer, but I am a writer, photographer, montage-maker, friendship bracelet connoisseur, doodler, you name it – I’d like to think, pretty artsy-fartsy. I write poetry that I convert to songs and, when I am really inspired, I write lyrics.  I like to pretend I play guitar (even though I only know a couple chords), and realistically, when you have original lyrics and music, you've gotta mesh the two together and sing.

Problem is, when my blood sugar is high or rapidly rising, I sound like Miley Cyrus at the 2009 Grammy Awards – like screechy metal, and when my blood sugar is too low, I can’t even see the guitar strings clearly let alone strike the right ones. (I also can’t write anything of remote, coherent, intelligence and practically don’t have eyes for seeing let alone the “photographer’s eye.”) In a nutshell, doing what I love doing involves ensuring that my blood sugars are stable and in range.

I have absolutely no idea if it’s biological or psychological – or if the two are connected in any way – but I’ve found that I can focus, sing best, and harness inspiration into producing an essay, song, photo, etc most successfully when I am slightly dropping from, for example, 140 to 90, or even 120 to 100.

With college-essay season in full gear, and being in the middle of recording for the first time, I’ve gone to extra lengths to be on top of my ‘betes (trialing the Omnipod being one of these lengths.)  And if you were to ask me my recipe for a successful artistic endeavor, I would give you a nice little note card to put in the location where you work your magic (for me, I write, sing, and play guitar in my bathroom – weird, I know, but best acoustics in my house):

Savannah’s Recipe for Producing Whatever Your Diabetic Artsy Fartsy Little Heart Desires:
(Makes 1 serving)

1 ¾ cup inspiration
4 cups water
¾ focus
2 ½ cups emotion
1/3 sinus health
¼ cup sugar **

** Depends on your sensitivity factor

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Thank you so much for writing this, Savannah.  I'm printing out that recipe and sticking it to my mirror.  And for anyone reading, what's your "recipe" for staying inspired?

September 20, 2010

Guest Post: From Pumping to Pens and Back Again.

Today I'm happy to host a guest post from fellow Clara Barton Camp alum Abby.  Abby helped orchestrate my visit to CBC this past summer, and I'm thrilled that she didn't mind telling some of her overseas travel stories here on SUM.  This post touches on that delicate dance between insulin pumping and pens ... and back again.  (And what the hell is in blood pudding, anyway??)

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Abby and an adorable puppy.This past August, I traveled to Scotland with my family, and no matter how hard I tried to leave it behind, my diabetes tagged along. I’ve traveled overseas before, but not since I was 15 and then I was more concerned about which lip gloss to bring than how to best manage my blood sugars.  I had a lot of thinking to do this time. Working at CBC the six weeks before my trip really helped me figure things out.

I finally decided to take a pump break and use Lantus and Humalog pens for a few reasons:

  1. Call me crazy, but it makes me really uncomfortable to be wanded down by random strangers in blue suits because I have a pump in my pocket. 
  2. We decided to only bring carry-ons since we didn’t want to hassle with luggage at the airport (or pay the ridiculous fee to check a bag) and pump supplies take up a lot more space than a few extra pens and some needles. 
  3. I was concerned about re-arranging my basal rates to fit my new wake/sleep cycle and figured Lantus would give me a steady basal, and slightly less tight control; a sacrifice. 
  4. I was getting ready for a pump break anyway (I tend to take one every year or so, it’s nice to have your pants fit the way they should without a plastic lump in your pocket!)

Hurdle #2: For some reason, ever since I was a tiny human, I’ve always taken Lantus in my left leg (big fan of alliteration, I suppose).  This meant revealing my thigh on an airplane full of strangers while flying over a very large ocean. Awesome. Final decisions before boarding the plane: wear yoga pants for easy thigh access, give three other people in my family a bag with insulin pens and glucose tabs, and have the note from my doctor clipped in my passport at all times.  Oh and don’t talk to strangers.  Land of tea and scones here I come!

My blood sugars were high on the plane (sitting around for six hours made me stuck in the 300s for a while (awesome) and then the sleep deprivation caught up to me and decided I should be in the 60s until we ate dinner … or lunch … except it was 9am in Scotland.  (Oh silly time differences.)  Everything was going just swimmingly, until we went out to eat the first time … time to put those years of carb guessing - I mean counting - to work.

The food in Europe is, well, lets just say different than food here in the States. I ordered a ham and cheese toasted sandwich (nope, not a grilled ham and cheese) and hot chocolate, figuring I could fairly accurately carb count the bread and typically hot chocolate is either with or without milk.  Oh boy, was I wrong. The bread had butter on both sides, I’d never tasted cheese like that before, and I’m still not quite sure what was in that mug of steaming brown liquid. Forty-five minutes later, in the 300s again.  Sweet. (At least this gave me a good reason to pass up a sample of blood pudding, especially after the waitress couldn’t tell me what was in it because it was “just a mix of everything” … no thanks).

My family is very into trying the food at different places when we travel, and I’m totally down with that idea, but about three days after these uncountable meals and bouncing from 50-350 every few hours left me feeling like a slug and packing my own PB&J sandwiches whenever we went out to eat (I do have to give some credit to their equivalent of the FDA, because the carbs were counted on packaged food down the the 0.1g … If only my Humalog pen could accommodate!)

After a few days of diabetes interrupting my trip we came to an understanding and my blood sugars leveled out enough for me to enjoy my time in Scotland.  My family was awesome and understood that we couldn’t eat out as much (which saved us a bunch of money too) and we had a fairly routine schedule the whole trip which really helped.  I only forgot my Lantus once, and remembered about three hours later, which worked out alright.  Will I take a pump break when traveling overseas again?  Most likely not.  I rely far too heavily on my active-insulin feature and my CGM sensor. But I don’t regret trying it this way, and things worked out just swell.

So after some minor ups and downs and a big fat fail at carb-counting, the trip was still a success. And even though I rarely use diabetes as an excuse, I sure didn’t mind saying no to the mysterious substance known as blood pudding.

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Thanks, Abby!!  If you've taken a pump vacation, how did it fare for you?

September 14, 2010

Guest Post: Project Greenlight.

I couldn't be more excited to be hosting Lindsay's guest post today.  Even though she and I have yet to meet in person, she's definitely a kindred spirit.  She's recently married, itching to start a family, and dealing with type 1 diabetes every day.  She has graciously offered to share her words here today, about her quest for a little baby of her own. 

*   *   *

Lindsay and Mike, at their wedding

The anxiety sets in the second I set foot into the building, just like it always does.  There’s the all-too-familiar heartbeat that you can hear in your ears.  It’s so loud that you wonder if everyone else is hearing it too.  The stinging cold sweat that you can feel creeping up around you.  You know the one I mean.  I’m waiting at Dr. G’s office to find out the results of my latest A1c.  But this time is different.  This time, the result is going to tell me whether or not we get the green light to have a baby.  Gulp.  I hear her at the door.  She walks in with her sassy heels and perfect hair.  I can’t read the look on her face.  Oh God, oh God…is it good or bad?  GOOD OR BAD?  “Lindsay I couldn’t be more proud of you than I am right now.  Your A1c is 6%.”  The grin on my face and tears in my eyes say it all and I cannot wait to bolt out of there so I can call my husband.

But…to really understand what an achievement this is for me, you might want to know a little bit about where I was just a few years ago and what got me here.

I was diagnosed with type 1 diabetes on April 6, 2003, just a few weeks shy of my 27th birthday. I had been ignoring the signs and symptoms for far too long and had the weight loss and hair loss to prove it.  I was scared straight just after my diagnosis and became what I like to call a “model diabetic.”  I tested methodically, counted every carb and gave myself shots.  I never did get used to the way the Lantus burned when going in, but my A1c went from 15% to about 7% in three short months.  Great, right?  Well, yeah, it was.  But it didn’t last.

I had a very time-consuming job that had me traveling the globe and visiting countries with menus in languages that didn’t even use a familiar alphabet.  How was one meant to count carbs in a country where you were not even remotely certain of what you were eating?  After one too many experiences of fighting with Russian bartenders and Indonesian security guards screaming “I NEED JUICE RIGHT NOW” and them not understanding what I needed so desperately, I decided it was easier not to give myself insulin when I traveled.  This is bad, but it’s worse if you knew just how often I traveled.  And so my A1c climbed higher and higher.  It reached about 12% which is where it stayed for a good number of years.

I was in the midst of that cycle when I met my husband, Mike.  I was intensely private and protective about my diabetes, mostly because I was ashamed that I wasn’t taking care of myself.  I certainly didn’t want to show him my biggest weakness, but he already knew something wasn’t quite right.  He loved me enough to gently ask why he never saw me test or take a shot, and my fierce protective nature would bubble up and lash out at this wonderful man who was only trying to help me.  Thankfully, he stuck with me and loved me despite this nasty habit I had gotten myself into.  I realize now that because I didn’t WANT to have diabetes, I acted as though I didn’t.

After we were engaged, he encouraged me to give the pump a try.  I had been adamant against it because I feared being attached to something 24/7.  I had heard that the pump could truly be life-changing in gaining better control, so in May of 2008, I became a pumper.  While my A1c would dip back down to the mid 8% range here and there, it would always wind up climbing higher.  It was a roller coaster of management.  

In the midst of wedding planning, I Googled “wedding dress” and “insulin pump” in the same thread and found Six Until Me.  I read every single post of Kerri’s in the days that followed and forwarded the link to my family and close friends.  I was overjoyed that I had found the DOC through her and that I found a whole community of bloggers who not only felt the way I did, but who were brave enough to put it all out on the table for others to benefit from.  That kind of selflessness and courage is what changed my life.  I’ll say it again, because it’s that important to know.  The DOC, beginning with SUM, CHANGED MY LIFE.

My “cooler than the flip side of my pillow” husband and I have been married nearly two years now.  And we want a baby (a lot.)  About a year after our wedding, he said something to me that I will never forget.  It was the last shove I needed on the road to gaining and maintaining better control.  “There’s no time like the present.  We both want this.  If we’re going to have a baby, then we know what we have to do.  We have to get that A1c below 7% together and I will do anything I can to help make that happen.”  He used words like WE.  US.  For the first time, I realized I was no longer in this fight on my own.  I had a partner in crime who was going to help me get to the place I knew I had to be.  With Mike by my side and my army of DOC friends, I knew I could do this.  I am really proud to say that I have.  Green light?  It’s on.  (Right, Kerri?  wink)  

*   *   *
Thank you so much, Lindsay, and I can't wait to introduce you to my family this fall!!

September 13, 2010

Guest Post: After an Open Letter the JDRF Opens Up – Part I

This week, Chris and I are attending the Toronto Film Festival, where Buried will be screening tomorrow night.  While I'm away in the lovely (and frigging cold) Canada, I have some fellow PWDs who have offered to guest post.  Today's post comes from longtime type 1'er, Scott Strange, who wanted to share his discussion with the JDRF Grassroots Advocacy Program.  Below, you'll find Part I of his three part series, so be sure to check out his blog at Strangely Diabetic for the full story!

Take it away, Scott!

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Scotty Strange of the DOCFirst off, I would like to thank Kerri for the opportunity to be a guest blogger here on Six Until Me.  Kerri was one of the first D-bloggers I “found” when I started discovering the DOC, so this is really is quite an honor for me.  I swear there were times when my feet felt swollen…  
 
Recently, I wrote An Open Letter to the JDRF where I was pretty critical of the organization and it’s apparent attitude toward adult Type 1 community, especially those of us who had been out here the longest.  Replies to my post mostly showed agreement with what I was saying, but also showed that the amount of T1 “support” varied from local chapter to local chapter.
 
I had a reply from a member of the KC Chapter’s Board of Directors.  We had dinner one evening at a local BBQ place and he filled me in on the local adult efforts going on which sound very interesting and I’m excited to start participating in locally.
 
I also had an offer of a phone interview with Mike Kondratick, who is based in Washington, DC and is the Director of the JDRF Grassroots Advocacy program.  He is part of the Government Relations Office and, as such, tends to deal strictly with raising money from the public sector; whereas the local branches focus on private sector fund-raising.
 
First, a little background on what the Government Relations Office, and local advocates from all over the country, make happen through meetings with federal legislators.  The general appropriation to the National Institute of Health (NIH), as directed by Congress, for all disease research is about $29B annually.  T1-specific research sees about $283M of the $2B allocated for all diabetes research.   Through the Special Diabetes Program (SDP), another $150M is allocated every year, bringing the T1-specific research funding total to about $433M annually.  The local Chapters raised nearly $100M in 2009 with about 80% dedicated to funding research.
 
The Government Relations Office has 13 staffers, including two T1’s and the mom of a child with T1.  They are a pretty small staff compared to some other “big ticket” disease organizations.  Thus, they try to take the “squeaky wheel gets the grease” approach to get in front of legislators as often as possible, with as many people telling their story as possible.
 
Also managed out of that office is the Artificial Pancreas Project (APP).  Many of the roadblocks facing the APP are regulatory ones, so it is a good match.  Personally, I believe that the APP is a very important, if not critical, slice of the diabetes management pie.  Let’s face it; we are not going to see a T1 cure any time soon and getting a medical device approved can be a much quicker process, in theory at least.   The better control we are able to establish, the longer we can put off complications and the better off we are.   When you look at the costs of treating complications years down the road; the savings to the healthcare system could be enormous, not to mention the potential increase in the quality of our lives.
 
I asked what role he sees for adult T1’s in the JDRF Grassroots Advocacy arena.  The goal is to get as many them in front of lawmakers as often telling their stories of how diabetes affects their lives.  The JDRF is really very small compared to other groups such as cancer and heart disease and basically “competing” for the same research funding, so they try to become the “squeaky wheel” by putting T1’s in front of lawmakers, usually at their local office.  This allows a highly personalized message to be delivered, one that the lawmakers tend to remember.
 
The JDRF Children’s Congress is held every other year and is really designed to be a big media event; putting children and their families in front of lawmakers at Congressional Hearings.  The adult T1s that are there are usually celebrities and the JDRF uses their fame to bring additional attention to Type 1 diabetes.  It is also important that the children with diabetes (CWD) see these celebrities and can maybe gain some inspiration from them.   Now the only issue I have with this is that celebrities often don’t have the same financial restrictions placed upon them as the vast majority of T1s.  They may have someone on the payroll whose job is to make sure their condition is properly managed.  They don’t worry about the cost of test strips or insulin.  This, in my opinion, presents a pretty skewed picture of the actual affects of diabetes on adults to the media.   Hopefully, lawmakers have spoken to enough adults to see the difference, but honestly look at the myths that are out there.  Media really hasn’t caught on and we need to change that. 
 
They try to organize two to three events every year to get advocates of all types in front of lawmakers at both the federal and local levels.  The meetings back in their home districts tend to be more impactful as they are usually more one-on-one and they’ve been very successful in making sure that the legislators remember these meetings.  But to accomplish this, they need people at the local level willing to tell their stories; and at the end of the day, these stories are just as impactful as the stories of children and their parents. Every other year, the JDRF also runs a program called The Promise Campaign that is specifically designed to facilitate these meetings.
 
Mike sees two main groups of adults involved with the JDRF’s advocacy activities.  1) people, often parents soon after diagnosis, that invest themselves quite heavily in the JDRF’s research- and cure-focused messaging and advocacy and 2) adult T1s.
 
Before the APP, there was really a limited stream of messaging to adult T1s.  The JDRF didn’t tell a coherent story about how the things they did helped improve people’s lives on a daily basis.  Their story was about what will hopefully happen at some future point in time.  This may be a very key point in the “rift” between JDRF and adult T1s.   The JDRF is laser focused on fundraising for research and a “quantifiable” result for them may be just learning something that can help find the cure.  But as a T1 myself, that result is pretty much meaningless as far as things go on a daily basis.  To me “quantifiable = hands on”, when can I get one?
 
One of my frustrations with the JDRF was that the messages I did receive always “wanted” something; but what was I getting out of the deal?  I could never find an answer to that question.  As I bemoaned earlier, the Spring 2010 newsletter for the Kansas City Branch had an article about having a local T1 get together, but absolutely no mechanism for finding out more, not even a clue where to check.   I see a lot of us, not the JDRF, out here trying to do this on our own, providing the type of support that we, as long term adult T1s need and answering those who are asking for help.
 
This is where Mike sees great opportunity to improve communications between the JDRF and the adult T1 community.  They basically haven’t been focused enough on reaching out to the adult T1 audience, looking for ways both can benefit from a partnership.   Besides financial contributions, there is so much additional information out there that a collaborative approach could greatly benefit all.   They are currently weak in this area, but Mike believes that steps are being taken to improve this and thinks we should be able to see some measureable improvement by this time next year.  But still, he recognizes that doesn’t excuse the fact that the JDRF hasn’t performed well in this area previously.
 
The JDRF is moving to a more collaborative approach than they have had before; talk “to” people, not “at” them.  They can’t reach the goals they want to reach without people feeling more motivated to stay engaged at the local level, not necessarily just with the local chapter itself, but locally as a group of advocates to get things done.  This is where the Grass Roots Advocacy program comes into play.
 
Stay tuned tomorrow for Part II at Strangely Diabetic.

*   *   *
Thanks again, Scott, and the pleasure of hosting your post was all mine.  (Also, I hope your phantom ankle swelling went down.  :) )

August 30, 2010

Guest Post: Walking the Type 1 Tightrope.

Thanks to the move we have on tap for tomorrow and the fact that we're up to our eyeballs in packing tape and cardboard boxes (and also that we've accidentally packed Siah into three boxes now ... that cat had better be careful or she'll end up in the moving van), now is a great time for a guest post from a fellow diabetes blogger. 

This morning's post comes from Jacquie of Typical Type 1, and I'm very honored to be sharing her writing talent here on SUM!

*   *   *

JacquieI swear I wasn't trying to get out of jury duty.

See, I was in the juror pool, answering questions about my job, my home ownership status and the last parking ticket I'd received, when the judge asked one question of all of us: "Is there anything we should know about that may impede your ability to serve as a juror in this trial?"

Sheepishly, I raised my hand. "I have Type 1 diabetes," I admitted. "It's not a huge deal, but there may be a few minutes when I'm not able to pay complete attention. I may have to eat something in the middle of the trial."

For a second, no one said anything. Then the judge spoke up: "Hundreds of thousands of Americans have diabetes, and they're able to perform everyday tasks like jury duty. If you need to eat, just let us know, and we'll take a recess."

I nodded, and accepted my fate as a diabetic juror. (Also, I felt like kind of a dumb ass for even saying anything.) While I sat there and listened to the details of the trial and the life stories of my fellow jurors, the weird familiarity of the situation started to sink in. Of course I know that hundreds of thousands of Americans live with diabetes, Your Honor. Of course we're all able to perform everyday tasks with relative ease. Of course I'm a normal person – except for the times when I'm not. Sometimes I have to excuse myself from a meeting or a bridal shower to shotgun a juice box. Sometimes I wear a mechanical pancreas in my cleavage. Sometimes I say things on the phone with insurance company customer service representatives that I would never say to a person in real life. But I'd be darned if some innocent citizen was going to go to jail because I'd miscalculated my breakfast bolus and spaced out on the defense's arguments.

This was a perfect example of the proverbial tightrope we all walk as people with diabetes. Lean too far to one side, and you're Sick. Fragile. Old before your time. Wilford Brimley's biggest fan, with a collection of pill organizers and sad story to tell anyone who asks you how your day is going. Teeter too far to the other side, and your friends, family members and co-workers begin to believe that your diabetes is no big deal, after all. They'll become convinced that your insulin pump does all the work for you, that diabetes is no more of an inconvenience than the task of flossing, that maybe if you just exercised more or laid off the Cinnamon Toast Crunch, your health problems would effectively disappear.

Before I started wearing my pump – and way before I started connecting with others in the diabetes online community – I treated my disease as an accessory. I wasn't embarrassed about it, but I wasn't exactly forthcoming, either. I gave myself injections in cars and at dinner tables the way other people apply lipstick. I kept up with everything, but I didn't obsess over it. Every once in a while, a roommate would complain about my trail of test strips, or someone would shoot me a look while I tested in public, and I would retreat into a more secretive or jocular mode, shrugging off diabetes like it was a case of the sniffles or pesky rash.
Now that I'm in my thirties, I feel like it's a tougher performance than ever. I don't want anyone to assume that I need to eat lunch just because it's noon, but I also want people to know that when I need to take a break from normal life to treat a low, I'm not screwing around. I really do feel like crap, and I really am in a potentially scary situation. Forty-five minutes later, however, I feel as average as they come. (Assuming I haven't overtreated, of course, but that's an entirely different kettle of Swedish Fish.)

I suppose the balance between "sick” and "normal" is just as difficult to achieve as a consistent blood sugar level that's not too high or too low. The story of Type 1 diabetes – and how any person lives with a chronic illness – is a complicated and nuanced one, and it takes decades to tell.

Am I a healthy person who happens to have diabetes, or a diabetic person who happens to have a pretty healthy life? For this girl, the jury's still out.

*   *   *

Thanks, Jacquie!  And for you guys, what's your take on that last bit?  Are you a healthy person who has diabetes, or a diabetic person who has their health?  

June 30, 2010

The Child's Reply to Her Mother.

Steve at Without Envy broke my heart by answering, by way of poetry, the letters I wrote to BSparl while she was growing inside of me.  I'm very honored to be sharing his words with you guys today, as I read them to myself over and over again in the hospital, waiting patiently for my daughter to arrive.

*   *   *

The Child's Reply to Her Mother

Dear Mommy,

Were the world imperfect and only so cozy
compared to your big pregnant belly,
I would wish for these moments to last,
To be as close as I am to you now.

But Sound lends music to eager ears;
Thoughts turn from angst and guiltless fears;
And Galileo falls quiet;
This child inside you stirs.

Old Winter has gone, and blossoming flowers,
Bibs, small dresses and candy pacifiers, are sprung in baby showers;
While monitors, cultures, and blood pressure cuffs,
Hold but a whisper’s attention.

Fluids and proteins, and peeing in hats,
Headaches, fat feet and carpel tunnel wraps,
Will soon give way to the soft touch of your hand;
This child inside you stirs.

But could nature embrace, and wrap tenderly
The same tender love you’ve woven for me,
In your arms do I wish for these moments to last,
To be as close as I am to you now.

Love,
Baby

*   *   *

Written by Steve, who blogs at Without Envy.  Please visit his site and appreciate his fine writing!

June 08, 2010

Guest Post: Diabetes Sisters Weekend.

The Diabetes Sisters Weekend for Women took place a few weeks ago, and as much as I wish I could have been there (something about a new baby and whatnot), I am so excited to be posting this recap from Sarah Condon, who was there for the whole thing! 

*   *   *

Sarah and Nicole JohnsonOn Saturday, I woke up at 230am, hours before my flight took off. This was the weekend that my entire life would be reevaluated, redone, re-inspired. I arrived at Detroit Metro Airport around 4am expecting TSA to hassle me about my insulin pump (now that its tubeless) and all of my supplies that I needed with me in case of an emergency (insulin pens, pen needles, a plethora of new pods- hey I’m clumsy and I’ve managed to rip a pod off in some of the weirdest ways). I reviewed the TSA website prior to this weekend to make sure I was packing everything correctly so I knew that I had to have my shoes off (eww!) and my liquids and laptop pulled out, no big deal. I also pulled out my bag of diabetic goodies too, just in case. After pulling everything out and trying to juggle my purse, backpack, laptop, bag of shampoo and the like, and the bag of goodies, the TSA agent was not what I expected. They were friendly and walked me right through security without a second glance (well almost, the guy behind the x-ray machine smirked at me. He probably was trying not to laugh at me since I packed everything into baggies, even my underwear, and I tight rolled my clothes into little logs). I sat at the gate for almost 2 hours, occasionally walking around. I knew this trip was of great value monetarily but I had no clue how much I’d value every second of this trip …



I touched down in Charlotte, North Carolina, and race walked to the opposite side of the airport (do you know how huge that airport is? Or maybe it just seemed abnormally large because I was trying to balance a backpack and purse while trying to keep my dress from riding up and race walking in my sparkly heels. Note to self: sparkly heels are amazing. Not so amazing when traveling.). Once I’ve arrived at the gate and boarded the plane, I was filled with anxiety. I was alone in a state that I’ve never been in before and I knew no one (what if something happened to me, like a fierce low?). The closer I got to my destination, the more the anxiety turned into excitement. I was on my way to meeting women who are just like me, diabetic or persons with diabetes- depending on their point of view (I personally don’t care, but I’ve always said that I’m diabetic. While diabetes doesn’t define me, it is a very large part of me and its something I fight for, fight against, and fight with). Some time passes and I get into my rental car (a Yaris- really small and adult word for “crappy” car) and head toward the hotel.

All of the 20 minutes of driving and getting lost was exasperated by a pending low- I say pending because it wasn’t yet confirmed by a glucose test but I could feel it full blast coming on and coming on with a vengeance… first, aggravation while driving… I know I’m from out of town, but really, you all drive like idiots on I-40. Or maybe it was me driving like an idiot? Then the confusion sets in… I’m going even lower and this confusion had made me (yes made me) read the directions from MapQuest wrong. While looking for a gas station (there are none, btw) I pull out a roll of glucose tabs and quickly chew a few. Getting really frustrated, aggravated, confused, and now weak, I pull over and activate the GPS program on my phone and quickly discover I’m two miles away. SUCCESS AND RELIEF!!!


The conference was starting to get underway (it was around 5pm at this point) and just thinking about it makes my eyes water (you’ll see that the smallest things make my eyes water... cute babies, love, sunshine, being alive, etc). There were 100 of us, women with diabetes. Every woman had a type of diabetes but I’ve met more Type 1’s here than I’ve met in my entire diabetic life (persons with diabetes life?) which is almost 14 years. We’ve talked about where we were from (I was the only one from Michigan, as I expected) and how long we’ve been diabetic (here’s that conundrum again) and how excited we were to be surrounded with people like us, to be away from the kids, to be away from the significant others, to be away from the food police, to let our hair down and just be…. Us. It was here that I’ve met some of the most amazing women, the most inspiring women. I’ve felt so alone my entire life and here I am, it was the complete opposite of what I’ve felt back home. Guest speakers entertained, stories were shared, icebreakers were agreed upon, and we all laughed and giggled our way through the orange soul train. DiabetesSisters… We were sisters, we were sisters with diabetes. One big family full of battle wounds, success stories, frustrations, and celebrations.

I overslept for the Belly Dancing class that I wanted to go to, but the events from the previous night were well worth it. During breakfast Nicole Johnson spoke about her life with diabetes and her determination to not let diabetes stop her. This woman was my hero growing up as a pre-teen and then teenager with diabetes. She was young, she was pretty, and she was Miss America 1999... her life seemed pretty amazing and she proved to me that I could do anything that I wanted to do; after all, diabetes didn’t stop her so why should it stop me? Having her tell us about her life growing up with diabetes made her even more of an inspiration- while her life seemed amazing, she had the same daily struggles as me (as well as the rest of the women there). At the conclusion of her speech we all got the chance to meet her and take pictures with her. The afternoon discussion panels were interesting and it was astonishing to know that I wasn’t the only one dealing with the matters discussed. Once again, I was no longer alone.

I left early because my flight left at 7pm but I offered to drive another attendee to the airport too and her flight left a bit earlier than mine... and this time TSA did search me and question me. My bags were scanned with no issue but then the receiving agent told me she wanted to test my bag for explosives. I was trying not to laugh at her, I know she is doing her job, but it was just the irony of the situation. I don’t get searched in Detroit but I get searched on the way back ... just plain silly. After giving me the all clear to continue, I gather my items and turn to walk to the gates. This is when things get slightly intense... she asks me “what is on the back of your arm?” (I was wearing a sundress). I politely inform her it’s an insulin pump. She looks confused and asks me what its purpose was.

 Trying to be polite, I inform her I’m diabetic and instead of taking shots all the time, this injects insulin into me. She starts to move her arm as to touch my pod (I’m using the Omnipod) and now I’m losing my politeness, “I prefer that you do not touch my insulin pump, you wouldn’t want me touching your arm, or your behind. This is like an artificial pancreas, like another part of my body”. She gives me this blank look, I knew I confused her and honestly, I did it on purpose so she would get a supervisor. She looked at her supervisor who was sitting just a few feet away and heard everything and he smiled and asked me how long I’ve been diabetic (which I replied “around 14 years”), he smiled proudly at me (a big full teeth smile with a glimmer in his eye, which may have been a tear), bowed his head and told me to have a safe trip and a blessed life and to keep doing what I’m doing because I’m doing something right. It was cool to have a complete stranger react that way. Once I got past security and got familiar with where my gate was located, I decided to walk around; it’s good for the blood sugars. I hear my name out of nowhere so I turn around and walking towards me is B, the sister I drove to the airport. We walk around some more, get a quick dinner, and continue to chit chat before parting ways again. As I continued on my journey home, I started to get all teary eyed; being surrounded by some of the strongest and bravest women was beyond inspiring and made me reevaluate how I care for myself and my diabetes. I’ve never felt such support before and to look back on it makes me get all teary eyed all over again.

Diabetes doesn’t define me but it is a part of me....
And it’s a key to the door to an amazing sisterhood.

*   *   *

Sarah has had type 1 for 14 years (no complications), is an active breakdancer in Metro Detroit, and spends weekends with her boyfriend and cable stealing cat.  (Editor's Note:  Her cat doesn't steal cable.  Her cat stole the camera upload cable.  But her bio made me laugh out loud at the thought of a cat stealing television cable.)

May 20, 2010

Guest Post: Painting by Numbers.

I think "Instructions Not Included" is a very cool name for a diabetes blog (or, as I'm quickly learning, a mommy blog).  I'm excited to have Becky from Instructions Not Included stepping in today here on SUM to guest blog about all the freaking numbers.  NUMBERS!  People with diabetes know the drill - there are so many numbers to juggle throughout the day that if you aren't a math major, it can be pretty daunting.  Becky acknowledges that, but she also gives a beautiful twist at the end that I just loved.

Thanks for posting today, Becky, and be sure to check out her blog!

*   *   *

Becky from Instructions Not IncludedI am twenty five years old. I stand at five foot and a debatable number of inches. My last HbA1c was 6.2%. Cholesterol was 3.4. By the end of today, I will have done approximately 1340 injections. I will have tested my blood glucose levels over 2555 times, testing seven times a day if everything goes well. I have filled and disposed of four sharps bins, two are sitting filled up under my coffee table, and I'm working on my seventh.  Today is my 365th official day of having Type 1 diabetes, which makes me a whole year old. Time flies.

Numbers are fascinating. They really are. I'm always keen to look at the numbers on my test results - it's in my nature to want to understand what's going on. I think there gets to a point though, and it happened to me recently, when you just want to yell 'stop!', because there are just too many numbers. It reaches overload, and you can start to feel as though you're either drowning in them, or it's all there is to you.  

It's all about the numbers. It's this amount of mmol/l. It's that many grams of carb. This percent and that percent. Turning this into a fraction, working out the carb value. Dividing and multiplying. Adding and subtracting. Diabetes has done so much more for my maths skills than watching Countdown ever did when I was trying to pass my GCSE.

I've always found it strangely reassuring that though I rarely see my consultant, he remembers where I work, knows that I take ballroom dancing classes, and remembers my housemate. But yet I know that it's my numbers he's really interested in.  Unless I say something to concern him, it's what's on the paper that matters.

I did a bit of research, based off a hazy memory I had of some figures of what the human body consists of. According to the U.S. Bureau of Chemistry and Soils, the body is made up primarily of oxygen, which clocks up at 65%, followed by carbon (18%), hydrogen (10%), nitrogen (3%), calcium (1.5%) and phosphorus (1.0%). Then there is potassium, sulfur, sodium and magnesium, copper, zinc, selenium, molybdenum, fluorine, chlorine, iodine, manganese, colbalt, and iron, all at under 1%. Finally, trace amounts of lithium, strontium, aluminium, silicon, lead, vanadium, arsenic and bromine. And if you made it through that, I'm seriously impressed.

So that's what makes up a human body. But is it what makes up a human being? Sure, I'm 65% oxygen and 18% carbon, as well as all the rest, but that's not what makes me me.  When I was talking to Andrew (my housemate) about this post, and that I was researching what makes up a human body,  and he said something that really struck a chord:

The elemental form of almost anything, is almost worthless. Take a diamond, for instance – it's just a lump of carbon. Same thing we stick in our pencils. Change its chemical composition, and it's worth far more.

That's very much what I'm trying to say.  I might have a HbA1c of 6.2%, but I also compulsively buy pyjamas, and have at least 11 pairs. I test at least seven times a day, but I also don't like to walk with someone on my left hand side (strange but true).  These are some of the things that make me who I am. Diabetes and all its related statistics doesn't define me. I'm sure that it's true of you as well.  So maybe every now and then, when we're swamped with all these numbers, it's a good moment to take a deep breath, and remember some of the things that make us a diamond rather than a heap of carbon.


May 13, 2010

Guest Blog: Dealing with the Tough Stuff.

Mike Lawson offered to guest post, and I'm always one to encourage people to share their stories ... even when those stories hurt to share.  This afternoon, Mike shares a very tough experience with us, and one that I think anyone (diabetes notwithstanding) can relate to, on one level or another.  Thank you for sharing your story, Mike.

*   *   *

This is the one where I’m super-depressing.
 
Mike and DanMy apologies to Kerri.  I was originally going to write a post for Six Until Me titled “Twitter Your Way To Better Blood Sugar,” and it was going to be awesome…but with some recent events in my life I couldn’t help but do a quick switcherroo.  So now you have the super-depressing story of how diabetes has negatively affected my love life:
 
There are a million articles on the web about how to support your loved ones living with diabetes.  You can find half a million articles on how diabetics can help their loved ones deal with this chronic illness.  I’m going out on a limb, but I think this may be the first blog post out there about how diabetes can ruin a relationship.
 
Last week I ended a relationship with my partner of three years.  And it sucks to say that my type 1 diabetes was a factor in the breakup.
 
Dan and I started dating back in 2007, and quickly hit it off.  We both have nerdy hobbies and love sitting around criticizing the television.  We both wear dorky glasses.  We frequently went out to dinner, or I’d cook for him.
 
What Dan didn’t know at the time was that I had a really nasty secret: I had absolutely no control over my blood sugars.
 
I was waiting out my health insurance’s stupid pre-existing condition penalty, and struggled to afford the basics for my diabetes management.  I wouldn’t test my blood unless I felt sick because when paying full price, those strips are more expensive than a strip of gold leaf.
 
I’d like to make villains out of the insurance companies, the government or other people…but the reality is that I dropped the ball on my own well-being.
 
During this time Dan tried to understand my Diabetes.  He has a problem-solvers brain, and hated not understanding why my glucose levels were high when all I ate was a pizza.  It’s sugar-free after all, right?  Ha!
 
About a year ago I was literally days away from the end of the pre-existing condition hold on my insurance when I started getting really sick.  I thought that I was facing a serious flu.  I had all of the normal and nasty flu-like symptoms…vomiting, aches, chills, and extreme tiredness.
 
Dan was super supportive…doing all of the things boyfriends do.  He got me crackers and medicine.  He came upstairs to refill my ice water.  And then I started having trouble breathing.  And I was hallucinating a little.  
 
Dan scooped me up and took me to the hospital.
 
“When was the last time you tested your blood sugar?” the nurse in the ICU asked me.
 
“Well it’s been a few days,” I said.
 
The nurses eyes got wide.  “You don’t test before each time you inject insulin?” she asked.
 
“Yes I do,” I said.  “That’s been a few days too.”  Actually closer to a month.
 
Ketoacidosis.  In basic terms, my body was completely deprived of all insulin.  This is potentially fatal.
 
I had to explain to the nurses and doctors about my pre-existing condition – which thankfully concluded one day before the hospital visit – and Dan sat by my side silently nodding as if he was an accomplice to all of this.
 
Dan cried in the hospital.  Scared as hell.  That problem-solver that I told you about had no control over this one.
 
Since the hospital visit a year ago, we had ups and we had downs.  I started seeing a wonderful doctor that put me on an ultra-low carb diet that made my numbers close to perfect.
 
What non-diabetics sometimes fail to understand is how persistent this illness is.  Even (God forgive the analogy please) cancer has an end date.  It gets better or it doesn’t.  And while I’m not wishing for cancer, I do think that perhaps Dan and I could have battled that one out a bit better because of the finality of it.
 
So with time, my doctor’s visits became more and more spread out.  I would cancel appointments because I hadn’t been testing and recording as regularly as I know my doctor would have wanted.  I started sneaking in more and more carbohydrates.
 
And the carbohydrates made my numbers higher, and I was afraid of what my a1c results would be.  Another canceled appointment.
 
I even lied to Dan about a canceled appointment.  “She said everything was fine,” I told him, unable to fess up to canceling another meeting with my doctor out of fear for the harsh words he might have.
 
There’s really no bad guy here.  Dan loved me and wanted me to be healthy so we could grow old together…with all four of our feet.  And I wasn’t a bad guy either.  When confronted I always told myself that I could handle this.  “Just give me one more week to start testing and recording my numbers, and then I’ll go to the doctor.”
 
And ultimately I failed.
 
I’m totally leaving some stuff out.  Dan didn’t break up with me because I can’t control my blood glucose levels.  That would be jerky.  And Dan is less than jerky.  But my diabetes (un)management was a contributing factor in our decision to break up.  It’s tough to worry about your own blood glucose levels … let alone your boyfriends.

*   *   *

Mike Lawson is a program director for a youth-serving non-profit organization in Tempe, Arizona.  He was diagnosed with Type II diabetes in 2005, and then was re-diagnosed with Type I diabetes in 2007.  At this rate, he should be diagnosed with a working pancreas any day now.  Find Mike on Twitter: @mrmikelawson or read his blog: WhatSomeWouldCallLies.com

May 06, 2010

Guest Post: Jumping Right In!

Holly is a sweetheart who is jumping into the diabetes blogosphere with her blog, Arnold and Me.  She says that she used to have a lot of conflicting emotions about diabetes, but she's no longer ashamed.  Check out her post below and then be sure to skip on over to her blog and welcome her to the crew!!

*   *   *

Hello, my name is Holly!  I am 25-years-old and I’m from Alabama.  I am married to the most wonderful, patient man I’ve ever known, Trey.  I am the pet momma to two cats (Charlie & Elvis) and one dog (Roscoe).  I love SEC football.  I work as an environmental engineer for NASA.  And I love the weather, especially thunderstorms, tornadoes, and hurricanes.  

Oh yeah, and I have diabetes.  

On December 11, 2006, I woke up in my local hospital’s intensive care unit after experiencing diabetic ketoacidosis.  My blood sugar was over 1400 at the time of my hospitalization.  That afternoon, I met my endocrinologist.  He told me that I was type 1 diabetic but it wasn’t my fault and I had done nothing wrong.  So, two weeks after my 22nd birthday, my life changed.  

For the first three years after my diagnosis, I was ashamed that I was diabetic.  I avoided testing in front of people, especially friends and family.  I would test and dose in restroom stalls when I was out in public.  I would always wear my pump inside a pocket or somewhere discreet.  Regardless of what my endocrinologist told me, I somehow felt this “thing” was my fault and I wanted to hide it.  

But now, I want to start a diabetes blog.  What changed?  Am I more open to this “thing?”  Am I less shy and private about it?  Hardly!  Then, why start a blog about one of the most personal areas of my life?

For starters, I am no longer ashamed to have diabetes.  I understand this was meant to be a part of my life and was written for me long before I was born.  However, there are some aspects about living with a disease that can only be fulfilled by sharing it with others:  

Accountability: 
I don’t know why, but my numbers are always better when I write them down.  Regardless if I eat the same or work out the same, my diabetes is more in check when it’s logged.  I guess it’s kind of like when a trainer tells you “think about the muscle you’re using.”  When I think about my diabetes, the more in control it seems to be.  I’m hoping that with displaying my numbers and habits for anyone to see, my conscious will nag me to take better care of myself.  

Community: 
The first type 1 diabetic that I met in real life was April (fellow d-blogger, Nerdy April, and space nerd).  We were working together at a summer camp for kids.  It had been less than six months since my diagnosis, and I guess I was still in shock.  When I told her I had just found out I was diabetic, she gave me a hug.  A hug.  From someone who understood.  NO!  She knew!  That was my turning point, I wanted more of that.  More people who felt the same way I did.  More people with this “thing.” 

Encouragement: 
Let’s face it, we all have our highs and lows (pun intended) with diabetes.   And I’ll have my days where all I want to do is test on my middle finger and say, “F-U, diabetes!”  But sometimes we have our little victories.  Like finally getting a fasting BG below 130.  Or bringing my A1c down by 0.5%.  I want encouragement for all that and for when my husband and I want to have a baby (but not yet, Mom!).  And encouragement for when I want to ask my doctor for a CGM—and fighting the insurance company afterwards.  

For those of you who are experienced at this, what other reasons have you found a d-blog to be beneficial?  I’d like to know what I’m getting myself into.  =)

So, thanks to Kerri, for letting me make my first official d-blog post on SUM.  You can check out my blog at Arnold and Me.  I’ll start with the story of my diagnosis, which you can tell from my intro was very dramatic.  Then, some more non-D things about me.  

P.S.  I’m also a huge Twilight nerd.  Team Jacob! 

May 05, 2010

Guest Post: Diabetic Parenting.

About a month before my daughter was born, my friend Elizabeth became a mom.  Her baby girl joined her family through the miracle of adoption, instead of the c-section that brought BSparl roaring into our family, and both Elizabeth and I share the experience of first-time motherhood and type 1 diabetes. 

Her post, which I have the privilege of posting here on SUM today, echoes many of my own fears and thoughts.  I've had a few lows while watching BSparl, and the combination of panic, guilt, pride, and love is intensity defined.  Thank you, Elizabeth, for sharing your story here.

*   *   *

It was a bad one.
    
And of course I’ve had the bad ones before, plenty of times. Where you’re working so hard or playing so hard (or worst of all, sleeping so hard) that you don’t realize what’s happening with your body until figuring out the series of muscles you’d need to walk feels as complex as solving differential equations, while drunk. Course I’ve had the bad ones before and it’s annoying, sure, and somewhat scary but no big deal. Except that this time it happened while my daughter was screaming.
    
I need to ingrain this in my brain, like that canned airline speech about what to do when your oxygen mask drops. My oxygen mask had conked me square in the nose, but my instinct, of course, was to save my child first.
    
The back story is that Anna has a hard time pooping, something called dyschezia where she gets all confused and tenses up. (I know, right? Who knew some babies actually have to learn how? This is not one of those things the baby books tell you, perhaps to keep you from gouging out your eyes in despair over what’s to come. Imagine this, a prolonged high-pitched screaming and me cheering, You can do it, push, push, push!  It’s like Anna is giving birth to a poop.)
    
The only thing that helps somewhat is to pull her knees up to her chest (as one would if she were giving birth to an actual baby), to help her relax. Drop her knees and the screaming escalates. So there I was last week, standing over the changing table with my hands on Anna’s knees, Anna sobbing, me sobbing and not wanting to let go. Until I didn’t have a choice. It was chomp down glucose tabs or pass out, so…and thank God I had the presence of mind not to try and lift Anna from the table … I dropped her legs, and tried not to hear the screaming as I raced to the kitchen.
    
It was awful.
    
And when I became lucid enough to think through what had happened, it became even more awful. Anna’s only five weeks old now, so she’s not in danger of rolling herself off the changing table, but what happens in three months when I can’t leave her alone? Or what if I’m carrying her or walking her down a busy street in her stroller, and I go hypo without realizing how low I am? And then there’s a whole other set of worries, not as immediate but just as profound…Namely, what will my diabetes do to Anna in the long run?

   
I’m sure all d-parents think this through before deciding to raise a child, and I wonder how they manage to come to terms with and accept it. Because my daughter will inevitably go through things no child should have to experience. There will be times when she isn’t the center of attention, and whacky-bg times I won’t have the energy to chase her in circles. She’ll be one of those children who, at the age of 3, knows how and when to dial 911, and as she gets older, experience will make her worry about me, doing that thing my husband does where he tries to gauge my sugar through the pace of my conversation. She’ll get used to the sight of blood. She’ll have to learn restraint, that some of the candy in the house is just for me. She’ll very likely see me with extremely low bg, nonresponsive or confused, acting in a way that scares her. She’ll likely see me go through various complications throughout our lives. She’ll likely lose her mom at a younger age than she would have otherwise.
    
Before my husband and I first signed up to adopt, I thought a lot about the weight the child of a diabetic parent might carry. I’m sure the d-parents who actually conceive a child have the same thoughts, along with others that’re even more terrifying (see: everything Kerri went through over the past 10 months.) But I probably looked at the issue even more closely, because this child’s existence didn’t depend on us creating her. I knew we’d be amazing parents, but I also knew that for every child available for adoption, there are tens of other amazing parents who want them, most of whom don’t have a chronic illness. (And okay, those of you who know me are now thinking you need to comment, saying she’s lucky to have us⎯You’re sweet, but that’s not going to help. I know we’re lucky to have each other, but that doesn’t change the fact that she’ll necessarily need to make sacrifices. And now that I actually know our daughter, and love her with all my heart, thinking about those sacrifices hurts like hell.)
    
Oh lordie, this post has gotten too melodramatic and woe-is-us-ish, sorry. Listen, I’ve also thought about the good things that’ll come from having a diabetic mom…And there are good things, or at least good sides to the bad things. Anna will hopefully learn to care how others are feeling, sooner than she would have without me. She’ll have empathy and patience. She’ll learn not to take health for granted. And, you know, learning how to dial 911 is a useful skill for anyone. But the idea of my diabetes ever, ever being a burden for my child is pretty heartrending. Add to this the very real fact that I have much less time to test and log and weigh food and remember how long I need to extend a bolus when eating oatmeal, and I’m just scared the whole family will topple down the huge mountain diabetic parenting can be.

And yet many hundreds of thousands of people do it every day, and do it really well. They probably have to learn as they go, which I guess is what I’m doing now. (My first lesson was to have a constant stash of Dex 4s in my pockets so I can eat without leaving her side. Should’ve thought of this sooner, I’m a slow learner, but I do tend to get there eventually.)
    
What else have I learned from these five weeks of experience? I have a checklist now on my refrigerator, with items to pack with me before I leave the house. Now that I have to remember what to stock in Anna’s diaper bag, it’s easy to forget my diabetes supplies. I’ve learned that lack of sleep and an inconsistent eating schedule will completely skew my insulin needs, and I’ve learned how to test and bolus while supporting a bottle with my chin. I’ve learned that dancing a baby around the living room requires a decrease in basal rate, and that a buzzing CGMS in one’s pocket, while dancing said baby, makes her squeal in surprise.
    
And over all of this I’m learning something that I’m sure Kerri is learning now too, that the many challenges of diabetic parenting are completely and totally overshadowed by the pure joy of it.

*   *   *

You can read Elizabeth's blog, or check out her fantastic books on her website.  Thank you again, Elizabeth!

May 04, 2010

Guest Post: Balance.

Despite the fact that she feels I say her name wrong ("Saraaaaaah" vs. "Sara"), and despite the fact that back at CWD several years ago, the lady at the registration desk thought she was my daughter (ahhhh!), I'm honored to have Sara from Diabetes Daily guest posting today on SUM.  :)  She's very tolerant of my ball-busting, and I am pretty sure she might be one of the nicest people I've ever met.  So thanks, Sara, for lending your words today!

*   *   *

Sara(aaaah)

My whole life has been a competition. I have an older brother so I was always working to be as smart, athletic, funny, and creative as he seemed to so easily be.  When I was able to find those things that I was good at, like school, I worked very hard to not only be good, but the best. I’m not just competitive but also a perfectionist.

I was not diagnosed with Type 1 diabetes until my senior year of college in 2003. I think until that point, I could count the number of people I knew with diabetes on one hand, and four of them had Type 2. It was a whole new world for me, and one that I had to quickly perfect.

For example, I was sent home from the hospital after my diagnosis with what was basically an exchange system diet. Since I suddenly felt like I couldn’t control so many things in my life, following that diet was something that I could control. I ate the same thing every day and can remember it even now – an English muffin with peanut butter and a scrambled egg with cheese on it for breakfast, a sandwich on light wheat bread with a banana and two small ‘sugar free’ cookies for lunch, and a piece of baked chicken with vegetables and a piece of toast or small potato for dinner. Every day. I could measure my success by how well I followed that diet, and I followed it well.

In January of 2007, I stumbled upon one of the diabetes forums looking for the answer to a question. Living my life in the online diabetes world quickly became a new measure of success. I went from posting on my blog occasionally to posting almost daily. I was always reading the comments and posting some of my own on all the diabetes message boards. I became almost a nightly visitor in a diabetes chat room. I twittered diabetes and even pushed myself to be one of the first people to successfully finish the diabetes365 photo project. If anyone was going to have an answer to a question, I was going to have that answer and I was going to post it first! Being the best diabetic and, more importantly, the best member of the diabetes online community was my new obsession.

Obsession is not always a bad thing. The pressure that I put on myself gave me excellent control of my diabetes. I got my A1cs consistently in the low 6 range. I always knew about the latest controversy, advocacy, and research. I was taking really good care of myself, but for completely the wrong reasons.

My life had become nothing but diabetes and I didn’t notice anything wrong with that until it slapped me in the face this past October. It was actually what caused me to write this post and follow up with this one. Two people who are a very important part of my life shared with me some very painful things that had recently happened in their lives.  I almost immediately felt guilty because I knew that I had been so wrapped up in my diabetes world that I missed my opportunity to prevent even a small part of their pain.

I was suddenly forced with reevaluating my priorities. I don’t blog as much anymore. I don’t tweet as often as I should. I hardly ever visit the message boards anymore and I had to step back from being a moderator on one of them. I dropped out of my second attempt at the diabetes365 project after about two weeks. My perfectionist tendencies want me to call that a failure. But you know what? A bigger part of me is perfectly content with all of those decisions.

Diabetes still requires a lot of my attention. There is not a meal, a bedtime, a vacation, or even a long car ride where it does not make an appearance. And every time I look at my meter I am still reminded of those feelings of success or failure based on the number that appears. But there is so much more to my life than diabetes and I would rather have my life be measured by those moments rather than words or numbers on a screen.

May 03, 2010

Guest Post: Twice as Nice!

Karen and K.C.

So, so awesome to have my good friend Karen guest blogging here on SUM.  She's the creator of a diabetes blog, a knitting blog, and Siah's yarn nemesis.  She's one terrific lady, and I'm very excited to have her filling in today.

*   *   *

Three years ago if you bet me a year’s worth of Blood Sugar Nirvana that I’d have a diabetes blog along with my knitting blog, I would have taken that bet.  I would have insisted I’d never have two active blogs.  And I would now have 365 days of constant highs and lows ahead of me, while you’d be enjoying a year of perfectly in-range numbers.

I started my knitting blog in 2005 while teaching myself to knit with a book that had a chapter devoted to blogging.  With each knitting blog I visited, the urge to join the knit-blog community got stronger.  I soon I found myself setting up a Blogger account and diving in.  I liked blogging from the start, even back in the early days when no one except my husband was reading.  Over time, I gained some regular readers and made some great friends, both online and in real life.   Although I blogged mostly about knitting, other topics peppered my posts too, including diabetes stuff.  But the thought of starting another blog dedicated to diabetes never entered my mind.  I certainly didn’t imagine there would be a thriving diabetes blog community out there.

Then came the day I started to seriously consider getting an insulin pump, even though the thought of being attached 24/7 freaked me out.  The self-conscious part of me didn’t want what I deemed an ugly piece of medical equipment clipped to my favorite outfits.  So I typed “where to hide an insulin pump” into my search engine and was brought to this very blog.  I read with great interest how Kerri tucked her pump into little pockets that Ann Taylor pants were designed with.  All along I had felt like the only person in the world silly enough to be self-conscious about an insulin pump.  It was wonderful to realize that others wanted to keep their pumps out of sight as well.  I continued to visit Six Until Me and soon started to visit the blogs of those who left comments for Kerri.  Often I was tempted to leave my own comments, but I held back out of embarrassment.   I figured anyone who clicked through and landed on my knitting blog would wonder what that heck this knitting chick was doing leaving comments on a diabetes blog.   In hindsight, that was a ridiculous assumption, because the diabetes community is so supportive and welcoming!  But to me, if I really wanted to join the D-OC, I decided I would need to take the plunge and start a diabetes blog.  And that’s when Bitter-Sweet was born.

At times having two blogs can be difficult.  I will admit I don’t post to either blog as regularly as I’d like.  Sometimes finding topics to for two different blogs can be a stretch.  Although on a knitting blog, it’s completely acceptable and even encouraged to just put up a picture of a pretty skein of yarn - that is absolutely considered a valid post.  It’s not so easy on a diabetes blog, because pictures of lancets or glucose tabs are pretty boring!  I could have just one blog that includes knitting and diabetes and anything else I wanted to blather about.  But I’m far too compulsive for that - I like things orderly and labeled, one blog for knitting and a separate blog for diabetes.  Heck, I could even start a whole new OCD blog but then I’d have three blogs . . . and three is an odd number so I’d feel compelled to start a fourth just to keep things even . . .  and frankly, it wouldn’t end well.  I’d end up with 100 blogs and people would start calling me a crazy blog lady.

So what is the upside of having two blogs?  Hands down, it’s the reward of being a part of two wonderful communities.  On either blog I can post about a problem or frustration, and my blog friends will rush to the rescue with support and tips and cheers to hang in there.  Although I have to say, I feel a tighter bond in the diabetes blog world.  Knitters are wonderful, don’t get me wrong.  But there is a different bond that forms when you share a chronic illness than when you share a hobby.  For this very reason, I’ve never once regretted my decision to maintain two different blogs at once.  Because even when writer’s block is at its very worst, and even though you can’t woo the D-OC with pictures of yarn, you can always get by with posting a picture of a good cupcake!

April 29, 2010

Guest Post: A D-Mom Tweet-Up.

Nan from My Pump Gear is today's guest poster, and she does such a great job of introducing her post that I'm going to just hand it over to her.  :)  Take it away, Nan!

*   *   *

Okay … I am thrilled to be a guest here @sixuntilme!!  Kerri’s is the first diabetes blog I started reading.  I remember searching for answers to my questions like  “How in the world does a 3 year old wear an insulin pump?”  And there she was!...talking about diabetes and fashion!  Well, I scoured her sight and archived posts until my eyes were bloodshot.  It was the starting point in discovering that my daughter, Claire, can actually live a full and happy life with, yes … diabetes.

When this opportunity arose to be a guest poster here, of course I thought of the exposure for our little business, My Pump Gear.  And, then I thought well maybe I just need to share our 8 year old daughter’s diagnosis story.  But, I’ve done that in several different ways online already.  So, if you’re interested, you can find our business here:  My Pump Gear and our diagnosis story here

What I really want to share is a story of connection for me, a mom of 3, whose youngest happens to have type 1 diabetes.

A D Mom Tweet-Up

“Twitter? Who has time for that?”

“A tweet?  What in the world?”

“What can possibly be written in 140 characters that’s worthwhile?”


I remember having those exact thoughts as I set up an account.  I thought it would be good for business, although I had no idea how or why.  I went through the motions and began “following” people in relation to diabetes.  And then I noticed someone whose location was the Monterey Bay area.  This intrigued me.  That location is like my second home, so I “tweeted” @notsostilllifes.  I don’t remember exactly what I wrote.  But it started a conversation.

That was nearly a year ago.

Since that time, twitter has become my go-to source for encouragement, inspiration and answers.  It has connected me to a virtual support system.  Parenting a kid with diabetes can be lonely.  And, though family and friends offer their love and support, no one can truly relate to the constant of diabetes except those who live with it too.   This diabetes online community, via Twitter, Facebook and countless blogs fills a void.   
My Pump Gear
Last Friday, I had the opportunity to meet Melinda (aka @notsostilllifes) and her husband, Scott…live and in person!  It was a D Mom Tweet-Up, as we called it.  We got to visit for a couple hours. It was wonderful!  We talked diabetes, of course.  But we also talked about all of our kids, sports, school, our lives.  

If you’ve ever communicated with Melinda at all, you will agree that she is a wealth of information when it comes to parenting a type 1 kid (and sea glass hunting too…but that’s an entirely different post!)  Her son, Michael, will soon be off to college next year.  He has had type 1 diabetes since the age of five.  Michael was to join us that day and meet with all of us too.  But other demands prevented him from traveling around the bay that day.  We look forward to meeting Michael (aka Captain Insulin) on a future visit!  He has the perspective on diabetes that we all should have.

It was interesting … while visiting, Melinda would begin explaining something and I would think, Yes, I know that about you or I remember that story.  You see, even though we had never seen each other in person, I felt as though I was meeting an old friend for the first time.  There was a bond between us already, even before our meeting that day!

Connecting with others in similar life situations is so important.  I felt pretty isolated when it came to diabetes … for years after Claire’s diagnosis.  The type 1 families we knew were very few.  We craved interaction with people who really could understand what this disease means to our family.  Who knew that support was literally just a mouse click away?

I look forward to our next D Mom Tweet-Up!  Oh and, now, when people roll their eyes at the mention of Twitter … I just smile and nod.  : )

April 28, 2010

Guest Post: A Family Affair.

I wish I had the chance to meet up with Traci when Chris and I were out at Sundance in January, but our schedules never synced up.  But thankfully, she's offered up her words as a guest post today, and I'm grateful to have her filling in with her perspectives on being the wife of a person with type 1 diabetes.

*   *   *

Traci and her husband,  ScottI remember sitting on that hard plastic chair in the doctor's office. The list of things we had to do before the wedding just running through my head. And you, so calm, but running your thumb softly over my knuckles. You knew what he was going to say. You had been living with this disease for so many years. I only thought I knew. I had worked with patients on the floor of the hospital who had diabetes. I got this. I understood this. A quick glance from you reassured me that we were going to be okay.
 
The doctor came in and sat down in front of us, paused for a minute and then looked at the chart sitting on his desk. He cleared his throat and then said, "First off, let me give you two my congratulations. However, I wanted to meet with you both, but most especially you Traci because there are some things that you need to know--that you will want to know as your marriage progresses. Diabetes will largely be your husband's responsibility, but you will find that it will become a family affair and you will have a large part in it as your marriage progresses."
 
And then came the lecture. The fact that Scott had had diabetes for over 20 years and had no long term effects at the time. The fact that I had to look forward to thyroid problems, kidney problems, amputations, and impotence?? (Is that word even in a soon to be newlywed's vocabulary??) I left armed with a dictionary sized amount of carb counting materials, diabetes booklets, and the smiley and sad faced chart that showed what signs and symptoms of hypo and hyperglycemia were.

The starry filled eyes of early marriage began to wane into the look of silent long term understanding, disappointment, and joy we came to recognize when we would look at each other.
 
The silent look we gave each other when we couldn't get health or life insurance because Scott chose to pursue his dream of owning his own business.  

The look we gave each other when we found out how much an insulin pump would cost out of our meager newlywed pocketbook wages.
 
The glance when we were told we couldn't get pregnant for years.
 
The surprised look when we saw those two dotted lines--a few short months after going off birth control.

Our first baby girl, and a few years later our first baby boy.

Our first house.

Saying good bye to our first house.
 
And signing for the second.

The comforting look of relief when you wake up and realize that I'm sitting next to you on a bed surrounded by tubing, IV pumps and bright lights after having an insulin reaction.

The tired looks we give each other as we grab not the alarm, but the meter at 3:00 am in the morning.

The weary glances we give each other when another and another and yet another medical bill come in the mail.

The look of pain depending on who got the pleasure of sleeping on the insulin pump most of the previous night.

9 years. Two kids. Two dogs.

Also two hospital admissions, two trips in an ambulance that you don't remember (but for some reason wish you did), and two different career moves. Looking back to 9 years ago when we sat in that same chair that sits in the doctors office today, I wouldn't change any of it. I'm actually grateful for it. And most especially, learning that your doctor was right. Diabetes is something you deal with and manage day to day, but it is a family affair. You are the one that shows me by example everyday that diabetes isn't something that your going to allow to take over your life. You live with it, and you learn from it. And you don't let it define who you are. Our kids have learned lessons on compassion and love that no book, no authority could ever teach them. And I have learned that love isn't just some word you throw around each day. It's much, much deeper than that.
 
Has it really become a family affair? In small ways I guess. I count the carbs for my dinner or dessert creations that you either happily or willingly try to consume to be nice. I order the insurance supplies and call to question the bills that arrive in the mail. You report about your doctors appointments, manage your day to day care, pump site changes, and invite me to wake you up at 3:00 in the morning to poke you in the event that you forget (which you quite often do, even when your son turns on that bright bathroom light in the middle of the night that you don't seem to notice). I entertain the kids when you have a sick day, hold them while you are taken away by ambulance, and check your blood sugar hourly for two days because you, yourself aren't able to do it. But while the doctor missed a lot of what our life would be like, he missed the most important thing. He never said how much your diabetes would bring us closer together. And I thank diabetes for forcing us to tackle the hard issues we may not have wanted to face, or may have put off. For sitting us down together at a computer each day to write about how we feel. For talking about the trivial and the serious parts of diabetes. And most especially, thank you, diabetes, for making us stronger through the hard times.

*   *   *

Scott and Traci are owners of the site DiabeticParents.org and write from their separate and combined perspectives on what life with diabetes is like on their blog http://blog.diabeticparents.org. Scott has had Type 1 diabetes since the age of 4 and was diagnosed with Addison's disease at age 19. He works as a sales manager and loves that it allows him to pursue his favorite sport of golf. Traci works with Utah Diabetes and the Faces of Diabetes and owns the site www.BurntApple.com. She teaches cooking classes and does regular appearances on her local television morning shows. They have two kids and two dogs who have this weird belief that they are kids in the family too. And are treated like it.

April 27, 2010

Guest Post: Thingy, Normal, and Me.

Today's guest post is from Amy, aka "collectingblues" on Twitter, who writes about her "thoughts on sewing, knitting, life, and that whole diabetes thing."  Take it away, Amy!

*   *   *

Sunday, January 10, was the first and the last time I said the phrase “the new normal.” I was three or four days into my transition to Cyborg Pancreas, and stood in the shower, sobbing at the looks of an infusion site and the Dexcom sensor on my stomach. As I got out and toweled off, I looked down, and said to myself, “Well, this is the new normal.”

I didn’t like the sound of that phrase then, and I don’t like it now.

What is normal? I’ve been type 1 since I was 3 years old. Quite literally, being diabetic is all I know and remember. I’ve seen the transition from the Autoclix (and still shudder at the thought of using it again, to the point of preferring to stick a syringe into my finger in the absence of lancet availability) and wipe-off test strips to shiny new “clickers” and the Dexcom (often referred to as Thingy). So for me, diabetes is normal. It’s not different, or special, or another pithy cliché. It just… is.

It’s occurred to me over the past many years that what’s normal for me isn’t normal for others. While I wouldn’t say that I have a cavalier approach to the Care and Feeding of a Type 1 Diabetic, I do have a different perception of Normal than your average “normal” 30-something. Stick a sensor into your stomach? No problem. Laser surgery for retinopathy? A pain, but better than kidney failure. Poke myself with a lancet eight times a day? OK, whatever — let’s get on with it. It hit me that others don’t have this fun when a colleague was diagnosed with gestational diabetes. “Amy,” she said, “I can’t imagine always having to do this.”

Sometimes I do wonder what it would be like to not have to think so much about diabetes. What would I do with my time if I weren’t looking at CGM data, or trying to figure out a combo bolus in my head to combat a high? Would I suddenly become a five-star chef, or turn out quilted bags like Vera Bradley? Probably not. Knowing me, I’d just sit around knitting until 1:30 a.m. … just like I do now.  

A few weeks before I got my Dexcom, I was at my parents’ home for a few days off at Christmas. My parents knew I wanted Thingy, and that it was a long-time coming. I had first commented to them when I got my Ping, that at a football game I had really felt “normal” when I bloused for beer. I suppose my father thought that the Dexcom was the next step. As we worked to load my car before I drove back to Pittsburgh, he leaned over, hugged me, and said, “I hope this will help make you more normal.”

“Well, Dad,” I responded with a wry grin, “I’m not sure if I would have been normal even if I weren’t diabetic.”

I’m just me.

April 23, 2010

Guest Blog: Patient Perspectives.

Bethany Rose is a new diabetes blogger on the block (you can check out her blog at Me with the D) and today she's offered to guest blog here on SUM while BSparl and I are hanging out (and most likely cleaning up spit up).  Thanks for blogging, Bethany, and I hope you guys enjoy her words!

*   *   *

BethanyLet’s be honest.  Dealing with doctors isn’t always as pleasant as we’d like.  It’s difficult when we really do need them for help with something so pervasive in our lives.
 
Nobody knows our diabetes better than we do – we live with it every single day!  Still, we so often emerge from appointments with doctors feeling scolded, undermined, and/or unheard.  Why?
 
To be fair, there are some really good doctors out there (I should know – I see some of them!) and there are some pretty scary complications associated with poor control over this disease.  Perhaps our doctors are just doing what they think is best to help us avoid these complications.
 
Maybe our doctors just need a little help understanding the full picture of what we need from them.
 
A few months ago I had a unique opportunity to speak with a group of medical students about what it’s like to have diabetes and to deal with doctors in that context.  As part of this discussion I was able to communicate to these doctors-to-be some of the points that I feel medical professionals really need to understand when dealing with people with diabetes.  Following are some of the issues I raised:

1.  Every person with diabetes is unique.  A textbook might be a good starting point, but realistically, nobody has “textbook diabetes”.   We want to be viewed as individual patients with individual problems requiring individual diabetes management techniques.  Clearly there will be similarities between us, and certain generalizations can be made, but just because one strategy works for one person doesn’t necessarily mean it will work well for everyone with diabetes.
 
2. Some of us have spent a lot of time educating ourselves about diabetes.  We don’t want to be lumped into the same category as patients who aren’t interested in understanding this disease or how to manage it.  We know what we’re talking about and we appreciate it when that fact is acknowledged.
 
3.  Diabetes sometimes requires thinking outside of the box.  Since we deal with our disease on a day-to-day, hour-to-hour, minute-to-minute basis, we might have ideas that our doctors may not have considered or seen before, or that don’t initially seem to make sense.  But even when our suggestions seem unusual, we want to be heard and we want our ideas to be given a chance.  They might actually work!
 
4.  Sometimes poor control isn’t an indication of a lack of effort on our part.  Sometimes it just means we haven’t found what works for us yet.  Sometimes we need help finding a solution.
 
5.  People with diabetes deal with a lot of guilt.  (I know Kerri’s touched on this one in the past.) We don’t appreciate feeling blamed for our diabetes, for our diabetes management problems that we work so hard to fix, or for our diabetes complications that we’ve worked so hard to avoid.  Encouragement and motivation are helpful – blame isn’t.      

I don’t know how much of what I said stuck with the students that day, and I don’t know how much will continue to stick with them as they go on to get their degrees - perhaps even specializing in endocrinology.  I’m sure I only touched on the tip of the iceberg in terms of improving the doctor/patient partnership, but hopefully I was able to plant some seeds that will benefit their patients who are living with diabetes in the future!

April 22, 2010

Guest Post: Testing the Target Range.

I am honored to have Riva Greenberg guest blogging today, and she has some great insight on what might be happening in the bodies of those who don't have diabetes.  Check out her post about testing the target range below, and thanks to Riva for filling in today!

*   *   * 

Riva GreenbergThirty-eight years ago, when I was diagnosed, I remember very clearly lying in my hospital bed being told by my insensitive young male doctor that having a baby was out of the question. Oh, baby, how times have changed. Happy to fill in Kerri as you put up your tootsies.

If I asked you right now where you think non-diabetics’ blood sugar hovers what would you say? I would have guessed around 100 mg/dl and here’s why:

1)    Pre-diabetes is considered anything over 100 mg/dl up to 125 mg/dl
2)    126 mg/dl and up is considered diabetes
3)    The target range prescribed for diabetics is between 80 mg/dl and 130 mg/dl
4)    I must have watched every video on videojug of Dr. Anne Peters, diabetologist and Professor of medicine and director of the USC Clinical Diabetes Programs, whom I respect and admire say we should shoot for 100 mg/dl most of the time.

But based on an unexpected family experiment the anecdotal evidence I gathered is rather different. In fact it seems non-diabetics’ blood sugar rises even above our prescribed target range some of the time. Call me crazy but this was news to me.

My evidence gathering all began a few months ago when my mother told me my 84-year old father had diabetes. I was shocked. Yes, a surprising reaction for someone who blogs and lectures about diabetes, but the thought that one of my parents would actually get diabetes was, frankly, shocking. Maybe I was just being a little possessive? After all, diabetes is my illness.

A few weeks later my mother told me my father no longer had diabetes. The doctor said his blood sugar was O.K. This seemed just a tad fishy to me. My mother was confused as well. “Would you bring your meter with you next time you visit?” she asked. “We’ll test his blood sugar.”

I returned two weeks later with a spare meter, 100 strips and 100 lancets, a lancing device and my intense curiosity. I had my husband in tow and my brother, sister-in-law and niece were there as well to join for a family lunch. Seeing my testing supply-haul, my mother said, “Oh, no, I just thought we’d test one time.” I obviously took this a bit more seriously than she did.

Bringing out the meter the requisite two hours after lunch my father looked at it suspiciously, so my husband volunteered to test his own blood sugar. Then everyone wanted in. My father tested, my brother, my sister-in-law and my 12 year-old niece. The testing results of this group of non-diabetics respectively were: 155, 158 (that’s dad), 131, 130, 102.

Now for the side-story. My husband’s 155 mg/dl made him concerned about his own blood sugar. So he decided to test his blood sugar pre and post meals for three consecutive days. His first day out, his pre-breakfast reading was: 92, two hours after breakfast: 94, before lunch: 83, after lunch: 128. That 128, we guessed was from his French baguette at lunch. We also reflected that his 155 at my parent's house was the result of a lot of bread at lunch. Both numbers seemed to confirm that no one lives at or near 100 mg/dl steadily and that a refined carb meal tips the scales upward even for non-diabetics.

Mind you this is all anecdotal evidence, but it does suggest that non–diabetics’ blood sugar, just like ours, goes up after eating and much higher at times than I would have guessed. It also makes me feel that these limits, bands and ranges we’re all trying to squeeze into throughout the day should come with a clause: “Sometimes no matter what you do your blood sugar will be out of range. Keep breathing and just fix it.”

This experiment may give you some piece of mind, it did me. I know that after struggling and striving to be hovering, like a space-craft, in target range all the time, that even my best efforts won’t always produce blood sugars that sit demurely where they should, and it’s O.K.

Two side notes: 1) My prince among men, my husband, toppled the second day into his blood sugar testing. “Boy, my finger still hurts from this morning! I don’t think I’m going to do this anymore,” he said. Frankly, I think it was the dribble of blood on his keyboard that pushed him over the edge.

And 2) my father does not have diabetes, but pre-diabetes would be a safe bet. As various doctors have told me, if we live long enough most people will develop type 2 diabetes over time as the typical American diet and lifestyle wears out our insulin-producing beta-cells. Good thing I left a meter and 95 test strips at my parent’s house.

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Riva is the author of “50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It” and “The ABCs Of Loving Yourself With Diabetes.” Riva presents educational/motivational presentations to fellow patients as a peer-mentor, blogs on the Huffington Post and her web site diabetes stories, and helps others live an exceptional life, not despite having diabetes but because of it, using diabetes as a catalyst to create a healthier, happier, more meaningful life.

April 21, 2010

Guest Blog: The Pharmacy Hoedown.

Nick has a the most adorable little girl I have ever seen, and both he and his little one have type 1 diabetes.  He has offered to guest blog here today about some of the challenges he faces at the pharmacy, and I'm happy to host his words here on SUM today.  :)

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There are a lot of things that are not funny about being diabetic, but there are some that are. Thrush is not Nick provided this image.  I sort of love this.  :)funny, but pretending to use your pump as a phaser on everyone that asks if you’re “brittle” is. Lows in the middle of the night are not funny. Looking incredulously at strangers and yelling “WHAT DID YOU DO” when your kid’s CGMS alarms is funny. Well, it’s funny to me anyway.

I never in my life thought that a trip to the pharmacy would be fun, let alone funny. However the perspective of a type 1 diabetic is nothing if not unique. The pharmacy is not a foreign land for us. Most of the non-pancreatically challenged among us wander in for the occasional anti-depressant and a pink “Snuggie.” We, however, are the business-travelers of the pharmacy world. I can pick up a bag of dog food and a 12-pack of juice boxes in no time flat, and I can do it in any pharmacy at any time. Mom is so proud.

Being in the pharmacy so often means we are keenly aware of when a pharmacy is well-run, and when one appears as though it is run by drunken space-monkeys. I had the supreme pleasure of visiting a well-run pharmacy in my hometown. The pharmacists and staff knew us by name, and they were partners in our health care. That’s really how it should be shouldn’t it? Frankly, I didn’t know any differently. And then we moved away…

I witnessed my first pharmacy hoedown within a month of moving to this fair city. My first thought was “so THIS is what a drunken space monkey looks like!” Since that time I have re-considered my position and decided I wasn’t really being fair to the pharmacy or to drunken space monkeys. What I was actually witnessing was a pharmacy hoedown.

In all likelihood, you have all seen a pharmacy hoedown; you just didn’t know the name for it. Luckily for you all, most of Kerri’s brain cells are being consumed by BSparl and mysterious writings found in jars of peanut butter, so I am here to enlighten you.

First, the pharmacy hoedown begins with you, the customer, walking up to the counter and automatically regurgitating your last name. This is where the dance begins. The pharmacy tech leans over toward you and says “Holmes you say?” And I say yes, and then I spell it. At the conclusion of this opening set, the fiddle launches in the background and the tech walks first over to the dizzying array of white bags arranged like a child’s playroom. Unable to spot the name, they spin in a circle and look through the bin of recently completed bags. Typically this stage of the dance is highlighted by a deep sigh followed by a customary deep bow to search under the counter, just in case my prescription magically ended up with her warm can of Amp. Is this dance sounding familiar yet?

At this point the tech joins their partner, the pharmacist, where a brief bow and conversation takes place along with them both tracing the same route, only in reverse. What a treat! Pairs! Following the crowd-pleasing synchronized 720 degree spin, the pairs portion of the dance ends…the fiddle slows to a deep and haunting rhythm…and the crowd behind you takes in a deep breath in anticipation of the move you’ve all been anticipating…

“What was your name again?”

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Nick offers up his "Obligatory Blogger Info" ... in his own words:

"I was diagnosed with type 1 diabetes about 2 months after my first endo tried to kill me by diagnosing me with type 2. My daughter, Emma, was diagnosed with type 1 diabetes when she was 9 months old; she is now a beautiful and happy 5 year old. My only randomly-updated blog can be found at Diabetes 360."

April 20, 2010

Guest Post: Getting Back on Track.

Today's guest post is from talented photographer Amy Free, and she was diagnosed with type 1 diabetes a year ago, at 27 years old.  She tells the story of the fog of falling out of control and the hard climb back.

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Amy Free and her husband
I hung up the phone and just wandered around our quiet empty house bawling my eyes out. Bristol, our great dane, followed me shamelessly as I ended up in a crumpled pile at the foot of our bed. The obvious concern in the nurse’s voice as she gave me my blood work results was enough to shame me. My blood sugar numbers along with my A1C were off the charts, and on top of that my cholesterol was also high enough to be of concern. I could not hide from reality any more. The numbers were there to prove me wrong.

About a year ago, at 27 years old, I was diagnosed with Type 1 diabetes. It was a jilting reality that I didn’t really fully understand, but it scared me enough to kick me into a reactive mode where all I wanted to do was fix it. My nature as a "people-pleaser" took over and I wanted to show everyone that I was smart and able enough to manage this strange new disease that had entered my life. So that is what I did... for the first few months. I successfully dropped my A1C from a hideously high 14, all the way down to below 7 within 3 months. I religiously monitored, charted, tested, gave myself shots, and dutifully counted carbs. But after a while all the shots and pricks and “managing” got to be quite bothersome. No one around me really seemed to understand what I was going through. Friends and family were supportive, but no one really seemed to fully comprehend this disease and the constant (and emotional) the management that I was all the sudden responsible for 24/7.

Once I realized that no one else really understood what was going on with my body, I decided to start ignoring it myself. I fell to the allure of eating whatever I wanted and still managing to lose weight (extreme weight loss was one of my symptoms before being diagnosed). I stopped checking my numbers and taking insulin as frequently, so when I did happen to check, my blood sugar was usually well over 300. It was not pretty. When people asked how my diabetes was doing, I just said... oh its fine. Most people didn’t even know what to ask to call my bluff. I somehow managed to get through my days in a haze of exhaustion by chugging water and Diet Dr. Pepper. Looking back it’s actually pretty amazing that I could put on such a good front (and that I never suffered from DKA), when in reality I was doing such serious damage to my body.

Thank goodness for that phone call from the nurse that snapped me back into reality. The reality that if I ever wanted to even try to start a family I needed to start making my body a safe place for a baby to exist and grow. I needed to start making my body healthy again for me, for my husband, and for all the people who love me. I needed to get back on track with my relationship with food and insulin, respectively.

That was almost 6 months ago now and I can safely say that I’m in the healthiest place - mentally and physically - in living life with Type 1 diabetes that I’ve been in quite some time. I have accepted that diabetes is a part of my day... all day, every day. It’s not something that I can just take a break from or ignore without serious long term consequences. Sure there are ups and downs, highs and lows along the way, but I’m learning accepting and learning from those things is a part of the healthy management process. The learning curve is a steep one, but I’m on the climb and I love to connect with others who are in their own various stages of the process.
*   *   *

Amy Free is a lifestyle photographer who lives in NC – and whose heart lives wherever adventure can be found.  She makes a home with her husband, Ross and their lovable Great Dane, Bristol. She has been living with Type 1 diabetes since August 2008. You can visit her photography website at AmyFree.com.

April 19, 2010

Guest Post: Firsts.

I'm off figuring out how to change diapers and all that fun stuff, but while I'm out, I've had some very generous offers to guest post in my absence.  Today's post is from Sherry Roberts, who writes the diabetes blog Jenna's Pet Monkey, where she talks about her life with her two daughters, one with type 1 diabetes.

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Sherry Roberts and her daughters

As parents our aim is to teach our children how to be independent of us.  It is a painstaking, bittersweet process spanning many years and encompassing countless achievements along the way—the first time a baby reaches for a toy, holds a spoon or takes a first step.   The first time a child sleeps over at a friend’s house, rides a two-wheeler, drives a car—each first represents a step closer to the goal of independence and is celebrated accordingly.  Having a child with Type 1 Diabetes adds considerably more to this list of firsts.

My daughter, Jenna, will be four years old in a few weeks and her two year diagnosis anniversary will follow nine weeks after that.  I haven’t pushed her to learn to perform any of the routine tasks related to the management of her diabetes.  She’s still quite young and lacking in some fine motor skills to accomplish the tasks involved with ease.  It takes a steady hand to zero-in on that bead of blood with a test strip then allow enough time for the strip to slurp it up until an adequate sample is obtained.  Besides, she faces a lifetime performing the never-ending, daily litany of blood sugar checks, boluses, site changes and corrections.  There’s no hurry.  Like other aspects of raising a child this will be a process requiring time, patience and a relaxed, supportive approach—the pace of which will be set by Jenna and her cues signaling readiness.

Last year on a few occasions, I tested the waters and offered Jenna the opportunity to do her own blood sugar check.  Each time she refused I would do the check myself without further discussion.  Then one day during a family camping trip I offered her the lancing device expecting her to refuse as usual.  This time, however, she surprised me when she quickly took it from my hand with such confidence—more than she was prepared to commit to.  Jenna’s expression when she pressed the device to her finger and triggered the lancet was that of shock, bordering on panic.   It was then that I knew she hadn’t really intended to perform her own check.    But when she saw the drop of blood and realized what she had done her panicked expression changed to one of proud amazement, like when a child snaps her fingers for the first time or blows her first chewing gum bubble.  

We congratulated her on this achievement being careful not to overdo it.  Jenna isn’t one for a lot of fanfare.  She is uncomfortable in the spotlight and becomes annoyed by too much ado, perhaps feeling patronized.  I thought this would signify a turning point whereby Jenna would feel empowered and take more of an active role in her diabetes management.  But this was an isolated event.  Jenna refused to do any more checks after that.

Then one day this past January, five months after the unintentional lancing incident, Jenna was just about to enjoy a mid-morning snack.  She had washed her hands and was pulling out the kitchen stool to sit and enjoy her cheese, crackers and half an apple.  I asked her to get the checker ready which entails getting a strip out (she has finally mastered uncapping the container without flinging strips everywhere, for which I am truly grateful) and inserting it into the meter.  Jenna said “Sure Mom. “ After a brief moment she said something I wasn’t expecting; “...actually, I’ll do my own check today.”  Then without hesitation she proceeded to do just that, as if she had done it a hundred times before.

When she was finished and the number appeared I kissed her on the top of her head and with as much restraint and composure as I could muster I quietly said “Good job, honey!”  But inside I was bursting.   I realized that this was the way it was meant to happen.  On her own terms Jenna had done her blood sugar check and had taken one more step closer to her independence—a step I wish with all my heart she didn’t have to take.  But the fact of the matter is it’s just one in a long line of firsts necessary for her to become independent in life and in the management of her diabetes.

It’s also just another reason for me to be proudly in awe of Jenna—my beautiful, brave, strong girl.

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Thank you so much, Jenna, for sharing your words!

February 18, 2010

Guest Post: Pilgrimage.

There are some great new diabetes bloggers out there, one of them being Without Envy, a blog written by the father of a little girl with type 1 diabetes.  Steve has offered to write a guest post for SUM today, and I'm happy to share his words with you.

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Pilgrimage

Steve from Without EnvyShortly after our eight year old daughter Lia had been moved to the Pediatric Intensive Care Unit late in the evening of December 23, the same day of her diagnosis for type 1 diabetes, the nurse working nightshift came in to check her vitals and IVs and she asked how my wife and I were doing. We told her that it was a bit much to absorb in one afternoon and because she was a nurse working in a children’s intensive care unit she said that she knew what we were going through and offered a meaningful smile. Then she said softly that we’d be just fine. She had a cousin whose son had developed diabetes some indiscriminate time ago at a similarly young age and since then the boy had taken charge of it and was managing very well. Neither of us knew what it meant to take charge of one’s diabetes but we were both tired and mentally worn out from the trials of just getting through that momentous day so we took what little solace we could from her comment and filed it away under kind, but impractical, healthcare reference.

Besides, we were hurt and dismayed and unsettled. We had no idea how this had even happened and had no interest in hearing testimonials about someone who was weeks, months, years down the road in treating their diabetes. Such well-wishing stories of mastery would become important, but not then, not with our daughter lying two feet away connected to tubes and a heart monitor. Nor were we inclined to receive them and similarly good intentions the next morning when the doctor on duty walked in wearing a holiday cartoon tie and a cheerful grin and wished us a Merry Christmas. I looked at him and hated at once his wit, his casualness and the apparent ease with which he was about to address us. Did he not see what I saw? Did he not know what I knew?

I got over him of course, just as I overcame the shock of her diagnosis and the pain and heartbreak of sticking her with needles, and the fear of letting her out of my sight. There was not much future in holding on to these things, for any of us. So we came home and with the instruction we’d received from the diabetes educators the truth behind what the night nurse had spoken of started to make itself clear. We counted carbs and recounted them. We performed the elementary calculations to determine the necessary insulin dosage then we, holders of two bachelor degrees and one masters  between us, had someone else verify it. We administered the shot through the tears and the anguish and watched as our pivotal day from the one prior struggled to become routine.

And in the days that followed it did and we listened to it and we learned and here we are now, ourselves weeks down the road. The tried and tested. Lay experts. Sharing our own testimonies, like pilgrims set out from their home, rucksacks stuffed with provisions, looking for others to witness and share in their stories and them in ours, hoping to uncover proof that you can take charge of this beast and manage well.

It’s not clear to me yet that you can. Perhaps manage and taking charge are too strong of words, an honest mistake made by someone connected only to the peripheral edges of diabetes. Reality most likely rests somewhere in the middle, a habitable settlement between freedom and tyranny. Wherever it lies, I can honestly say of the company we keep, none has been more supportive or understanding or willing to listen than that which we’ve found right here at our own fingertips. For your patience and your courage and care, we are exceptionally grateful.

Diabetes has changed us, no doubt, and when I hear others talk of their lives in terms of before this disease and after, I worry some because our lives before were good. Not good in terms of its flamboyance or abundance, we had none of that. But good in the sense that we ate right, we exercised, we lived life in moderation, and still...

It was a way of life that had we the choice we would not have aggravated, but like any pilgrimage, in words similar to that of my gracious host, it’s not the beginning or end that defines you, it’s the journey.        

See you on the road,

Steve   

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Thanks again, Steve!  And if you would like to contribute a guest post (especially around, oh, let's say the end of April, beginning of May ...), please email me at kerri (at) sixuntilme (dot) com.  

February 10, 2010

Guest Post: Sorry.

Today, I have the honor of hosting a guest post from Scott Kasper, photographer extraordinaire and parent to three little boys, two of which have type 1 diabetes. He offered to share a diabetes moment he and his family had over Superbowl weekend, which I'm proud to share here.

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Sorry

We are a family of five … a mom, a dad, and three awesome boys aged 12, 10, and 6. We love to do all the stuff that every family loves to do. This weekend was packed with snowball fights, snow men, fire in the fire place, hot chocolate, movies, the Super Bowl, and of course the family board games … fun for all ages!!!
 
Sounds pretty much like a normal, par for the course white picket fence family in suburban New Jersey doing what most normal families do … right? Well, for the most part that may be true. However, there is a big disclaimer that makes my family a bit of a departure from most others. Two of the three boys have type 1 diabetes. That means, for us, the six year-old’s blood sugar crashed half way through the snowball fight, the twelve year-old gets mad when he has to count his carbs as he grazes the treats at the Super Bowl Party, and the ten year-old (who does not have diabetes) complains that he is tired of having to have sugar free hot chocolate!! Oh, and then there is the board game…

This weekend the kids decided that they wanted to play Sorry™. Okay, that’s fun enough, and doesn’t last all afternoon the way monopoly does. Mom was reading a book (if you can still call it a book when all one does is scroll from page to page on the Kindle™), Dad was available, and it’s a game for four players….perfect!! Not exactly. One of the things my kids like to do most is NOT put stuff away when they are done. As it relates to Sorry™, that means that there are no green pieces left.
 
“That’s okay Dad”, pipes up the six year old, who has had type 1 diabetes since the age of 13 months. “I know what we can use!” Off he went toward what we refer to in our home as “The Cabinet,” where we have a veritable pharmacy of diabetes supplies. Within moments he returned with four cone shaped objects, just the right size to substitute as a Sorry™ game piece. It did not strike me at first, but as I got my first turn I quickly realized that the pieces he had provided were, in fact, packaged needles for the insulin injector pen. 

When in doubt, kids with diabetes IMPROVISE!
Photo by Scott Kasper

We are a family of five that is, in large part, defined by type 1 diabetes. I have seen it impact every aspect of our lives. About this, my wife and I are very sorry! We’re sorry that two of our boys have to grow up with the daily complexities of life with diabetes. We’re sorry that my middle son wonders whether he will ever become diabetic. We’re sorry that, perhaps, something we did or something we genetically passed on has caused this to happen…on a daily basis we are sorry!

This weekend, without even missing a beat and without realizing how NOT normal this is, my six year old resorted to using insulin injection supplies to play a board game … not just any board game … a game of Sorry™!

How ironic is that!

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Thanks for sharing, Scott!  To check out more of Scott's amazing photography, visit his website (and you can also become a fan on Facebook).  And if you're looking for a classy medical ID, visit the website of Scott's wife, Rachel, at RescueMeIDs!

January 04, 2010

Roddy Pippin: Shannon's Take.

I wasn't aware of this story until Shannon (fellow d-blogger at LADAdeeda) emailed me and asked me to help her raise awareness of this story.  Apparently, Roddy Pippin stole cattle.  And is being held for eight consecutive years, without proper medical care.

Roddy has type 1 diabetes.

Shannon has contributed a guest post about this issue, but I wanted to also add a link to a post on Roddy's Ride 4 Life page, about the crime he committed and the punishment he is receiving.  Check it out and draw your own conclusions as to whether this punishment fits the crime, and please read Shannon's post below for her take on Roddy Pippin.

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Many years ago, I watched a movie called Return to Paradise.  A thrilling premise, it centered on a young man imprisoned in Malaysia for drug trafficking.  He was sentenced to death by hanging unless his two friends, who also bought and used the drugs in question, returned to Malaysia and accepted their share of the responsibility – three years in prison if both returned, six years if only one returned.  The deal, while not in writing, was promised by the Malaysian justice department.  One friend ultimately complied.

But, in an unbelievable twist, an American reporter wrote a story about the young man, his sentence, and the “unjustness” of Malaysia’s justice system.  As a punishment for this negative portrayal of Malaysia, the judge on the case refused to abide by the terms of the agreement.  The first man’s death sentence remained, and the other was sent to prison.

Watching this film, I waited for the dramatic rescue of the man.  As he was led to the gallows, I waited for the last-minute stay of execution or other intervention.  None came, and he was hanged.

This movie was a fictional account, but it’s not difficult for us to imagine this sort of scenario happening in Malaysia.  It’s easy to picture it happening in China.  Or Indonesia.  Or even Mexico.  But, do we expect that sort of thing to happen here in the United States?  I never did.

Roddy Pippin is just twenty-six years old.  When he was nineteen, he committed a crime.  While it might not seem all that serious to me, I recognize that it is very serious to his victims.  His crime?  Cattle rustling.  He stole livestock from hardworking farmers in his Texas community.  At nineteen, he made a stupid, juvenile mistake.  One that he might pay for with his life.  Roddy has type 1 diabetes.

I think most T1s have thought about what would happen if we suddenly lost the tools we rely on to manage our diabetes.  I’ve even had the thought about what life in jail would be like for a T1.  It’s even worse than I thought.
As I’ve learned more about Roddy’s experiences, I know that being a T1 in jail is harsh.  Having your care managed by those who really don’t care at all is the reality.  Recurring hospitalizations for diabetic ketoacidosis (DKA) are common.  After all, people die from DKA all the time.  In fact, in a recent, highly-publicized Texas case, the parents of a sixteen-year-old girl are facing manslaughter charges in her DKA-caused death.  They took her insulin pump away, she became sick, and within days, was dead.

So, Texas recognizes that deliberately withholding insulin from a T1 diabetic is murder (or at least, manslaughter).  Yet, they care little for Roddy’s health.  Instead of giving him access to adequate medical care, Roddy has instead been moved to a facility that houses violent criminals, even death-row inmates.

Where is the justice in this?  How large should Roddy’s debt to society be?

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Your thoughts?

December 16, 2009

Guest Blogger: All I Want For Christmas is My Pancreas.

Today, I'm honored to have Catherine Price (of A Sweet Life and The New York Times fame) guest blogging at SUM, and she's tackling the issue of the Christmas holidays and diabetes.  Enjoy her post, and welcome her to the diabetes online community!

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December is scattered with diabetic land mines, and things only get worse on holidays themselves. In my case, that's Christmas, an occasion my family used to celebrate not just with large amounts of carb-laden foods, but by going to the Nutcracker, the world's most diabetically unfriendly ballet. Featuring a hula-hooping troupe of human candy canes, the entire second act is set in a place called The Land of Sweets, and stars the nemesis of every diabetic ballerina: the Sugar Plum Fairy.

I was lucky -- I wasn't diagnosed with Type 1 till I was 22, which meant I had a childhood full of injection-free holiday treats (and, for that matter, ballets). Believe me, I lived it up: Christmas was a time to make chocolate-dipped peanut butter bars for my grandmother, who had a sweet tooth, and birthday cakes for my dad, who was born on Christmas Eve. My mother and I celebrated the holidays by baking Irish soda bread and laboring over pots of boiling oil to make chrusciki, a traditional Polish cookie made of deep fried dough dipped in powdered sugar. And at college, when my classmates and I decorated a tree with hand-made gingerbread men, I was known for eating cookies off its branches. In other words, as someone who spent her youth with a natural source of insulin, I know all too well what we diabetics are up against. Forget two front teeth -- all I want for Christmas is a new pancreas.All I want for Christmas is my pancreas.

It's easy to let the consequences of our malfunctioning immune systems get in the way of holiday fun, but this year, I've decided to adopt a new attitude. I was wandering around a mall a few weeks ago and noticed that I was feeling very satisfied with myself.  I tried to figure out why and realized I was feeling virtuous for not spending money when there were so many options around. This made me happy for a moment, till I realized why, exactly, I hadn't made any purchases: there wasn't anything that I wanted to buy. I didn't want faux-fur-lined Dansko clogs; I didn't need reindeer candle holders from Pottery Barn. Sure, I enjoyed looking around, and I did end up with a $15 box of Aveda tea. But for the most part, being virtuous was easy. Not only did this faux sense of self-control make me feel good about myself, but it left me happier about the few things I did decide to buy.

So what if I were to adopt a similar attitude toward food? It's easy to bemoan all the things that diabetes makes hard to eat, but there are plenty of high-carb holiday treats that just aren't that good. Like candy canes, for example. Who needs more than a few licks? Egg nog is great till you see one of those holiday scare stories on the 5 o'clock news about how many calories there are in a cup (343, to be exact). And then, of course, there's fruitcake -- loaded with fat, studded with dried fruit, and completely, totally, unappealing. The list goes on. Christmas Stollen -- gross. Rum-spiked fruit punch -- fine, till you get up on a table at your office holiday party and insist your boss refer to you as Santa. Cakes that look like yule logs? Totally not worth the insulin.

Approached this way, holiday eating can become almost fun: just surround yourself with food you don't want and then take pride in saying no. It reminds me of a quote I once heard about Miles Davis. Someone pointed out that what made him such an amazing musician was the notes he didn't play. So forget feeling guilty about that one Christmas cupcake. Instead, measure your accomplishments by the food you didn't eat. That way, when you meet a holiday cookie you truly can't resist --or, in my case, a glass of really rich hot chocolate -- you can count up the carbs, turbo-charge your pump, and enjoy.

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Catherine Price 

Catherine Price is a freelance journalist and blogger/frequent contributor to the diabetes site A Sweet Life.

August 13, 2009

Guest Post: When to Laugh

George Simmons is a blogger I respect highly, and having met him in person several times now, I can say with certainty that he is a good man with a good laugh.  The guy is funny, even when things seem at their darkest and most uncertain.  He's faced some tough times recently, yet through it all, he finds the laughter.  I am appreciative of his post here on SUM, and most of all for his friendship. 
 
Take it away, SuperG!
 
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When to Laugh
 
I've had type 1 diabetes for almost 19 years now. A majority of that time I spent angry. Angry at this disease that I did not chose to have but that had chose me. I felt so different from my friends and family that I chose to ignore it instead of take control of it. I was a angry teen. Those two words go together a lot and especially for a teen who is diagnosed with a chronic illness.

So now I pay attention. I check my blood glucose levels about 8 times a day and I no longer angry. Now, you must understand that I do get angry. I am not tossing confetti around or clicking my heels together all the time but I can tell you, and I know my family would agree, I do not let diabetes anger me like I used to.

What is the secret? How do I not let things get to me? How do I get through every single finger stick, infusion set change, and bad number? 

I laugh. 

A lot.

If you've every been around me at all you will know my very loud, very infectious, very real laugh and I let it rip all the time. I laugh when my blood sugar is 123 because I shout, "I'm Sesame Street!" Or when I'm really high at 323 I'll start singing happy birthday to myself (March 23rd? Get it? Plenty of shopping time). If I squeeze my finger for blood and I notice several previous spots start to bleed I'll make a vampire joke or hope for a couple of "eyes" and draw in a mouth with a pen. Seriously. I'm crazy.

I just love to laugh. I seem to find humor wherever I go. Even when nothing should be funny, something can make you laugh and feel better. 

As of late, I've used Twitter to help me find stuff to laugh at or have fun with. Every time something has been going wrong I blame diabetes. I'll tweet things like "I #blamediabetes for my burnt toast!" or "I #blamediabetes for this awful traffic this morning!" So often we blame ourselves for a high number on our machine so it's fun to blame diabetes every once and while for other stuff.

The other thing I love to do it play "Test Strip Bingo." Whenever I open up a new vial of strips and I have a new code number, I will post it on twitter and see who else has the same code! Whoever does wins a "prize" which is just a funny/weird video I have found on You Tube. 

Both of those things, heck my whole take on this stuff may seem ridiculous to you but they bring some fun and laughter into something that is really not fun and quite serious. 

And honestly, I am tired of being angry all the time. If working a little harder to find fun with diabetes makes me want to pay attention to it more then so be it. 

It's worth the effort.
 
*   *   *
 
SuperG, I totally agree.  Laughter is the best, best medicine.  Thank you so much for the great post!!

August 11, 2009

Guest Post: Bennet Makes My Day.

Bennet Dunlap is a husband, father of some seriously cool kids, and blogger over at YDMV.  He's also the keeper of a pink camera and a bit of a goofball.  But he's been a supporter of the Sparlings (yes, both of us) and I'm both honored and a bit scared to have him guest posting on SUM today.  You just never know what Bennet is going to say.

*   *   *

Kerri asked me to guest babble while she flies off to Southern European film shoot. Sucks to be her huh?

What do you get out of the deal? Less than squat - you are stuck with me as the After School Movie of the Week Special Guest Star.  Sucks to be you, huh? 

Anyway this whole Mediterranean movie thing has me thinking of the old Clint Eastwood spaghetti westerns. Stumped for anything intelligent to say I thought I would turn to Clint for some type 1 diabetes care wisdom:

Diabetes life is only in part about Blood Work most is about attitude. Look at the meter and say make my day.  When you don’t like what is says then learn to adapt, to improvise. The key is to get the care done Any Which Way You Can. Don't walk a Tightrope trying to make it A Perfect World. That would be a True Crime.  Don’t go looking for a Sudden Impact.

Newbies  - you may be the The Rookie but you’re not in the Dead Pool. It isn’t Breezy, easy. BG is sometimes going to go Every Which Way But Loose. When your fingers feel like "Rawhide" remember someone thinks you are the Million Dollar Baby (Like say the strip companies!)

Be the Enforcer of what you do and let the numbers be the Changeling. When your numbers go to Where Eagles Dare or drops top where you are the Pale Riderdon’t let them make you feel you are Unforgiven on Heartbreak Ridge. You have the Absolute Power to move up from a Gran Torino to a Pink Cadillac.

It would be fun to move Clint into Larry Bird territory around here, so how about chipping in your favorite Clint inspired silliness?

OK if that doesn’t make you miss Kerri, I don’t know what will.

*   *   *Don't mess with Larry.  Or Bennet.

Ring, ring.

Kerri:  Hello?

Larry:  Kerri.  It's me.  I'm not sure if you saw that post from that Bennet guy?

Kerri:  Larry ... um, I obviously saw it.  It's what we were just reading before you called.  Kind of hard to miss.

Larry:  He's not building many bridges into our respective Madison Counties, Ker.  If he runs his mouth about our relationship, I might send him out to orbit like a Space Cowboy.

Kerri:  Dude, you just got sucked into it.   Don't let Bennet get in your head.  You'll never get him out.  It's like ...

Larry:  Escaping from Alcatraz?

Kerri:  Silence.

Larry:  Get it?  

Kerri:  Larry, this just got too weird.  I gotta go. 

Click. 

August 10, 2009

Guest Post: Living with a Dad Who is Living with Diabetes.

Today's guest post comes from Manny Hernandez of TuDiabetes.com (and he's also the author of Ning for Dummies - order it on Amazon!).  Manny and I presented at a conference in Philadelphia in June and while we were decompressing in the hotel bar, we talked about kids and handling diabetes when you are a parent.  I asked him to give me his perspectives on diabetes and his son, Santiago, and I'm proud to be posting his thoughts here. 
 
Take it away, Manny!
 
*   *   * 
 
When my friend Kerri asked me for to guest blog on SixUntilMe, I couldn't say no. She suggested that I write about how I explain diabetes and diabetes "goodies" to my son, Santiago (who thankfully doesn't have diabetes).

Back when I started being active about diabetes online, in early 2007 (he was three at the time) whenever he saw me doing a vlog, he was curious about it. He even sneaked into a few of the early podcasts I did, introducing himself as "Santiago from TuDiabetes" which we obviously were super-proud of. But what does diabetes really mean to him?

At some point, when he realized his dad had diabetes, he wanted to have diabetes, so he could be like his dad. Though I was proud to hear that (the "wanting to be like his dad part") I obviously didn't want him to develop diabetes. So I explained to him that diabetes is not something nice to have. It's something that requires poking one's fingers to test one's blood sugar, taking shots of insulin to keep blood sugars in control and living with the discomfort (and dangers) of highs and lows.

Since he turned 1 or 2, we signed him up for TrialNet. This involves getting blood drawn from him to send to a lab as part of these national trials to help with diabetes research. We get a letter a few weeks after every draw indicating the results (with him being a son of a diabetic, he's at a higher risk): when the letter comes in the mail, I hold my breath every time until I can read the result: "Your son tested negative for GAD antibodies..." Previous years, we'd taken him to have his blood drawn w/o a problem, but the most recent time, it cost us Episodes I, II and III of Star Wars (which I was able to find for a little over $20!) and a whole new level of love for Star Wars that I had forgotten about (from when I was his age and older).

Over time, he has stopped hoping to become diabetic. Thankfully (for me), he quickly understood how much a kick in an infusion site felt like a kick you-know-where, so we've established a code where I put my hand near my set when he's close to me (like when we're playing together) and tell him "Be careful, you know what I have there..." or something along those lines, and so far it's worked fairly well. :)

In the past year or so he picked up something that showed how much he cares about his dad. Because when I am low I tell him "I am not feeling well." Now, if I don't feel well because of a cold or something like that, and I tell him that, he will look for my meter and bring it to me, so I can test... and he actually wants to test too. He just prefers if it is with a "device that doesn't feel like a puya" -a syringe-like poke, in Spanish.

His solidarity and understanding, the way he shows his care and his knowledge about diabetes motivate me and make me want to take better care of myself.

Santiago's painting about diabetes
 
*   *   *
Thank you, Manny.  And thank you, Santi, for being a great diabetes caregiver for your dad. 

June 29, 2009

Guest Post: 500 Days of Diabetes.

After a hectic week with the conference in Philly and then Chris's great news, I need to spend some time today catching up on everything.  Thankfully, Jessica Phillips has offered to guest post today, writing about marking 500 days with type 1 diabetes.  She's come a long way, and I'm proud to host her words here on SUM.

Heeeeeeere's Jessica! 

*     *     *

As I was injecting myself with insulin on a lunch break at work, a co-worker walked by and exclaimed, “I couldJessica Phillips guest posts for SUM. never do that! EW! I hate needles!” Less than two years ago I might have agreed. I never had a strong phobia of needles, but that is not to say that I particularly liked them either. I was known in my childhood to run out of doctor’s offices into the parking lot at the first mention of “shot”. Now when I hear such a strong and callous remark to my now normal routine of insulin injections, I struggle with trying not to angrily reply, “Well you would have to give yourself shots if you had to in order to live!” or, “How do you think I feel? You think I want to do this?” I’ve learned as of late to simply smile and say, “It’s not easy.”

Reactions like this are commonplace for those of you who have experienced Type One Diabetes for many years, and even some for the majority of your life. For me, June 9th, 2009 marked my 500th day with type 1 diabetes. I was diagnosed in my hometown of San Diego, California on January 25th, 2008 at 26 years-old. For a couple months prior to diagnosis I had been experiencing the typical signs of hyperglycemia and a failing pancreas as I was constantly dehydrated, urinating, and tired. Being a college student and in a constant state of stress, I quickly attributed the majority of my symptoms, from dizziness to infections, to be solely related to my immune system’s battle with my constant stress. After many weeks of procrastinating, I finally urged my doctor to order a blood test. I went in to the lab on January 23rd and was called by my doctor 24 hours later while I was driving to school. The tone in her voice immediately caught my attention and set me in a state of alarm. She informed me that my blood sugar the day before was above 300 mg/dL and I was to avoid sugar and be referred to an endocrinologist immediately.

Luckily I was able to see an experienced endocrinologist the next day, and he diagnosed me with type 1 within minutes of being seated in the exam room. I was in complete shock, and felt confused, angry, and overwhelmingly sad all at the same time. I felt a struggle between trying to remain alert to the bombardment of information he was feeding me, and trying desperately not to cry. The doctor left the room to retrieve my new meter and insulin pens, and I lost it. Luckily I had some moral support with me, but I have never felt so alone and lost. I kept thinking, “how did this happen?” and, “what did I do wrong?” To have gone many years without having anything major occur medically, not even a broken bone, it was a major shock to hear I had something irreversibly wrong with me. I not only had something wrong, but I could not do anything to change it.

The next few days were extremely challenging to say the least. I was unable to give myself insulin and had to have someone else do it for me for the first couple days. I would sit and look at the needle and could not conceive of how this tiny piece of metal was going to go through my skin. I just kept thinking it was so wrong, and foreign. I also cried. A lot. And I researched online and in books so much that I felt as though I could speak at a lecture on the biology of diabetes. I found the knowledge empowering, and the more I grasped what my body was actually doing, and not doing, I became more confident in my ability to control my state.

Now, 500 days later, this diabetic routine is normal to me. I can hardly even remember a time when diabetes wasn’t on my mind. The memories have faded of when my blood sugar was not a concern, and when I was able to look at food as just food. The last year and a half has been a giant emotional roller coaster, full of ups and downs, but they have changed me. Sometimes I get the look of sympathy from others when I detail my hardships with this disease, anywhere from medical costs to just the simple annoyance of pricking myself all the time, and I have found myself realizing that although I would not choose to have this disease, I consider myself lucky. I am lucky of course to not have something worse, but having gone through this change has made me look at my life through a new and clearer lens. My bottom-line now is a cliché idea, but it is so true … life is short, and you only get one shot, so make it worth it, no matter what.

*     *     *

Thanks for sharing your story, Jessica.  (And for the record, Jessica is the one with the fantastic hair on the right in that photo.  Also for the record, I just realized that today is my 8,209th day with diabetes.  Holy crap, my pancreas is lazy.) 

May 22, 2009

Guest Blog: Siah Steps In.

I'm not sure why I'm even letting her do this, but she asked like a million times.  So here is a guest blog from Ms. Siah Sausage. 

Siah laughs at all of us.

Sigh.

*   *   *

I'm not as bad as she makes me out to be. I'm a little gray cat and I barely cause any trouble at all, so I'm not sure why she's always complaining about me.

Sure, I like to use the litter box and then attempt to snuggle with her, but I'm just as shocked as you are that she doesn't want to appreciate my olfactory contributions.  Every scent I make is lovely, I assure you.

And of course I have to pad around the bed while they're trying to sleep. But how am I supposed to know which side of the bed is softest and comfiest unless I try both out, repeatedly?  She's just grumpy because she goes to bed late and gets up early.  It's not my fault.  I just lay there, against her ankles, forcing her to sleep like she's the Vitruvian Man.  (I looked that up.) 

Yes, there's also some truth to her issues with me stalking her in the bathroom. But that's just fun for me.

Also, this whole "the cat ate my pump tubing" complaint is just plain silly.  I am a cat.  If something plastic and bouncy dangles in front of my face, I will go after it.  Instinct, people!  I haz them.  Besides, insulin has a nice, chewy band aid sort of taste to it. Same goes for playing with and hiding test strips.  Toys are toys - I don't care if they have your DNA on them.  (Yes, I also looked up "DNA."  I may be a cat but I can use Google.)

The plain truth is this:  She loves me.  When people aren't looking, she picks me up and snuggles me.  She balances used test strips on my head and laughs at how I walk around without knocking them off.  She talks to me when Chris isn't home, and I wouldn't be surprised if she was on the verge of issuing a commemorative plate in my honor.  

So don't listen to her rantings about what a pain I am.

The woman thinks I'm my own pajamas. 

*   *   *

I don't even know what to say.

May 21, 2009

Guest Blog: 8.5 or Bust!

Today's guest post comes from blogger Jeff Kuhns.  His daughter Olivia had type 1 diabetes and his blog, Team Olivia, was among the first that I found after I started SUM.  I'm honored to have him posting here, sharing the perspective of the parent of a child with diabetes.

*   *   * 

10.2!  10 point freakin’ 2!  I was aghast, shocked, astounded, and flabbergasted.  At least I felt the need to be.  Play the part for the dietitian and the CDE.  But I guess I knew.  Being father of the year was going to take a little more work.  I’m taking this hard because I had the unfortunate duty of being the one to take the day off and hit the doctor’s appointments.

As a father of a 10-year old Type 1 daughter.  I always struggle between the need for my daughter to gain independence with her diabetes and the need to make sure that she remains healthy.  This time I apparently erred in the wrong direction.  (I say I because I am writing this but really it is we – my wife takes a tremendous amount of responsibility.) Never have either of us been “helicopter” parents.  We were raised to be independent and have lived away from our families for almost 20 years. 

So, 10 point freakin’ 2.  Let that settle in and wrap your head around it.  That’s an average blood sugar of around 300 – AVERAGE!  And, Olivia, my daughter, is on a pump.  “Horrible,” as the CDE reiterated to me. What is going on?  (This is where I think it is pertinent to mention that Olivia was also recently diagnosed with ADHD.)  Forgotten boluses!  Incorrect basals! Not putting insulin in before she eats! 

I had to reconcile it with myself.  All of these things could have been better reinforced by my wife and me.  We are ultimately responsible for our daughter’s well being.  It was time to take back the responsibility for now.  Independence will come – but in small steps.  Now we have a goal, 8.5 or bust.  This means an average blood sugar around 200.  How?  Phone calls when we are not eating together.  My wife and I manipulating the pump at meal times.  Consequences for forgotten boluses.

Okay, so “Father of the Year” may have to wait a while but, there are more important things!

Olivia pretending to eat a giant cupcake.  :)
(Olivia pretending to eat a giant cupcake.)

*   *   *

Jeff, we'll be pulling for you.  I know Olivia (and you guys) can hit that 8.5!  Thanks for posting, and let us know what happens! 

May 20, 2009

Guest Blog: ePatient DaveTalks Participatory Medicine.

Today's guest post is from ePatient Dave, who beat stage IV, grade 4 renal cell carcinoma with the help of fantastic doctors, supportive family and friends, and the power of the ePatient movement.  Today, Dave writes at The New Life of e-Patient Dave and he's offered to post here on SUM about the true power of patients online.  (And we, as PWDs, know how important the patient community is!)

*   *   *

One year ago today I finished reading e-Patients: How they can help us heal healthcare, the ePatient Davee-patient white paper. It turned my head around because although I’d experienced excellent care in almost all ways, it showed that I as a patient have far more to contribute than I ever would have imagined.

The people who assembled that report (not me) are smart, perceptive, and insightful about the future. When I “synopsized” each chapter in posts on my own blog last summer, here’s what I wrote about chapter 2.

This chapter was my personal favorite, because it exploded so many myths and provided so much evidence that the change is already well underway.

Remember, I didn’t read this until late January 2008, six months after my treatment had ended. When I read it, my immediate question to the e-patient working group was, “How the (#@$! could I have gone through last year without ever hearing about this?? We need to get the word out!” So here we are.

From the introduction:

“John Seely Brown… notes that when established experts first consider the effects of new information technologies and the cultural transformations they produce, they typically do so from within the cultural constraints of their established professional paradigm … We were no exception. Our findings were so unexpected that we were forced to consider alternative points of view… But as Brown discovered, ‘Really substantive innovations – the phone, the copier, the car, the PC, the Internet – drastically alter social practices.’”

The authors – mostly doctors, remember – said “Our most helpful insights came from a growing awareness that e-patients use the Internet in three fundamentally different ways: to access content, connect with others, and collaborate with others in ways never possible before.”

See what I mean about how this had strong echos for me? They continue:

… many who have attempted to study or explain e-patients and many leaders in medical reform have overlooked, ignored, downplayed or even actively opposed some of the most innovative developments in modern medicine.

Presenting their findings, they said “We modestly suggest that the tentative conclusions below are no more ‘anti-doctor’ or ‘anti-medicine’ than the conclusions of Copernicus and Galileo were ‘anti-astronomer.’” The preliminary conclusions:

1. e-patients have become valuable contributors, and providers should recognize them as such.
“When clinicians acknowledge and support their patients’ role in self-management … they exhibit fewer symptoms, demonstrate better outcomes, and require less professional care.”

2. The art of empowering patients is trickier than we thought.
“We now know that empowering patients requires a change in their level of engagement, and in the absence of such changes, clinician-provided [information] has few, if any, positive effects.”

3. We have underestimated patients’ ability to provide useful online resources.
Fabulous story of the “best of the best” web sites for mental health, as determined by a doctor in that field, without knowing who runs them. Of the sixteen sites, it turned out that 10 were produced by patients, 5 by professionals, and 1 by a bunch of artists and researchers at Xerox PARC!

4. We have overestimated the hazards of imperfect online health information.
This one’s an eye-opener: in four years of looking for “death by googling,” even with a fifty-euro bounty for each reported death(!), researchers found only one possible case.

    * “[But] the Institute of Medicine estimates the number of hospital deaths due to medical errors at 44,000 to 98,000 annually” … [and other researchers suggest more than twice as many]
    * We can only conclude, tentatively, that adopting the traditional passive patient role … may be considerably more dangerous than attempting to learn about one’s medical condition on the Internet.” (emphasis added)

5. Whenever possible, healthcare should take place on the patient’s turf.
(Don’t create a new platform they have to visit - take yourself wherever they’re already meeting online.)

6. Clinicians can no longer go it alone.

    * Another eye-popper: “Over the past century, medical information has increased exponentially … but the capacity of the human brain has not. As Donald Lindberge, director of the National Library of Medicine, explains ‘If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
    * In contrast, when you or I have a desperate medical condition, we have all the time in the world to go deep and do every bit of research we can get our hands on. Think about that. What you expect of your doctor may shift - same for your interest in “participatory medicine.”

7. The most effective way to improve healthcare is to make it more collaborative.
“We cannot simply replace the old physician-centered model with a new patient-centered model… We must develop a new collaborative model that draws on the strengths of both systems. In the chapters that follow, we offer more suggestions on how we might accomplish this.”

Great stuff! An awakening for all players in the “ecosystem,” as we say in the business world: patients, providers, equipment developers, everyone.

Wake up to the new world of participatory medicine: equip, enable and empower patient participation.

*   *   *

I love it - "participatory medicine."  We, as health bloggers, are part of an enormous revolution.  And I'm proud we're all a part of it, from the bloggers to the commenters to the lurkers.

(Note:  This post originally appeared on e-Patients.net.)

Guest Blog: Cyclebetes.

The guest blog today is from Willie Cromack, the CEO for Accu-Chek Cyclebetes.  Willie writes passionately about Cyclebetes and their mission to keep the promise for a diabetes cure.  That sounds pretty darn good to me. 

The floor's yours, Willie!

*   *   *

I don’t have diabetes.  I don’t know what it is like to monitor my sugar levels.  I don’t know the emotionalThe cyclebetes logo. levels that accompany being a type 1 diabetic or even the parent of a child with diabetes.  I am not an official insider.

However, I am loyal.  I am aware.  I understand the consequences.  I am a parent. I am passionate about leaving the world a better place than when I came into it. And I must help my friend fulfill his promise.

In 2007 a group of five friends bandied around one man who had made a promise to his daughter.  I was one of those men.  The father’s promise: to cure juvenile diabetes before his daughter’s 18th birthday.  In 2007 she was 12.

As it turned out we decided to take our passion for the outdoors, sports and events and create a cycling event like no other. Team Halifax to Vancouver [Team H2V] was born.  The idea: relay race across Canada [just over 6000km] in the shortest period of time ever.  Long story short: we succeeded in crossing in only 8 days and raised nearly $1 million for the JDRF.  More than that the media we gained, we raised the awareness of juvenile diabetes in Canada by an enormous level.  Watch the story unfold here.  

When we returned I resumed my life as a bike shop owner, an event creator/promoter, and a dad.  However, I was haunted by the idea that we had created something amazing and I did not want it to die.

We continued with our ideas and proceeded to write a book on the attitude it took to create our amazing ride.  It was called the Principles of the Ride: How to maximize what’s inside You.  Of the physical copies proceeds would continue to aid the JDRF.  (If you want a free copy, you can get one here.)

Still it was not powerful enough to create a long-term legacy.  We needed young people around the world to take action, see their power and we needed our original ride to inspire their efforts.  For years I had done a lot of promotional charity work through my bike store and these efforts ended up yielding the final piece of the legacy puzzle.  In particular, I had done some 24 hour rides within my store to raise money for charity.  I would use a bike trainer to ride continuously for an entire day and our customers would throw a few dollars into the jar.  The money raised was always a significant amount but paled in comparison to the money we raised going across Canada.  Coming from the category of “you just never know who is paying attention or what will happen” a friend and racer at John Henry Bikes wanted to talk to me, inspired by the race across Canada.  He had also been a person who had threatened to join me on my 24 hour spins.  Together we decided to create a 24hr spin-a-thon at the high school where he taught.  But rather than being the heroes we would emphasize school leadership committees taking on the production.  The Team H2V ride across Canada would be the inspiration for a modified version of relay teams indoors and at a high school.  The focus would be - students leading students to help their friends, family and others with type 1 diabetes.

The idea was a huge hit.  The students loved it and attacked the organizing of it with zest and zeal.  They created the name Cyclebetes and decided teams of 1-12 would participate … the aim being as many teams as possible.  In the end each team was to attempt to raise $1000, our goal being $50,000 from the one school.  

Cyclebetes, version one, exploded! Thirty five teams, a student driven organization and $82,000 raised!

This was it. The true legacy.

Cyclebetes cools off!!

In 2009 Accu-Chek Cyclebetes officially became a charitable business.  In 2009, over 20 schools will participate in the spin-a-thons, a tandem relay engaging thousands of participants will relay over three weeks across Canada.  A relay team of ten will begin the process of moving Cyclebetes into Australia and a small relay team of ten will cross the United States stopping at local high schools to unveil what a father’s promise has yielded.

In 2009 the rock dropped in the ocean and the small ripples are beginning to spread.  

In 2009, Accu-Chek Cyclebetes will bring the promise back into the public eye, helping everyone realize that they can have an impact on the world.  In 2009 the start of something absolutely huge has created roots.

Goal: 10,000 schools, millions of riders, cure juvenile diabetes.

The promise revolution is alive.  What’s your promise?

*   *   *

Thanks for letting me host your post, Willie!   

May 19, 2009

Guest Blog: Loving the D-OC.

Power of community.Thanks to my friend Landileigh at Landileigh's Little World for guest blogging today.  (Hopefully, as you're reading this, I'm drinking some kind of tropical concoction from a coconut and laying out on a beach.)  She's one of the kindest souls here in the diabetes community, and I'm proud to host her post.  Take it away, Landi! 

*   *   * 

I want to thank Kerri for allowing me to be a guest blogger on SixUntilMe! She is one of the main reasons for this post, and I hope to explain why.

So often we are asked about our “diabetic team.” Videos and brochures you receive from your doctor’s office always talk about your “diabetic team.” They explain that this is your endocrinologist, your nutritionist, your CDE, family, and friends. I believe that these days my team also includes my Online Community.

My online community began with the Diabetes 365 project in October of 2007. The support from the other photographers that were participating, through comments and then through the mail, was outstanding. Soon I was to learn that their support was not just relegated to this particular project. There were blogs, and social networks, and messaging. It was reaching out to me in all sorts of mediums of communication.

In February of 2008, I met my first diabetes online community member, then another, then another. These online people were now no longer figments of my imagination, but flesh and blood who responded in kind, like true friends.

At any given moment in time, there is a D-friend online, either on Twitter, or Facebook, or Juvenation or one of the other social media outlets. Someone to commiserate with, laugh with, cry with, or just to hold your hand – virtually. I value these friendships as much as I do the ones within my real life. They are real, just thousands of miles away.

Recently my dearest D-friend went on a vacation for a week. Far from time zones where we could really talk, I missed her more than I thought I could. I awaited for her return as if I was awaiting any loved one from an airport. During her time away from the internet, I knew that she was so much more than just a face/name on the internet that went away when I closed the lid of my laptop. She was in my thoughts, and prayers until I knew she was home safe and sound.

I love the D-OC and all that it stands for. The community of people that we are striving to become grows by leaps and bounds, and that feeling of no longer being alone in this crazy ass disease gets smaller every day.

If you have a chance, reach out to a fellow D-OC’er and give ‘em a virtual hug today. Since you are reading this, I’m giving you one right now too! Remember, we are all part of your diabetic team!

*   *   *

Thanks, Landi!  I can see the t-shirts now:  "Have you hugged a blogger today?"  For more on the power of community, check out my post on "Who Benefits From Patient Blogging?"  

May 18, 2009

Guest Blog: Looking In.

Hello from my cruise!  (Only sort of, because I'm loading these guest posts in ahead of time, so right now I'm home with a gray cat circling like a shark.  But I'm pretending to be on the cruise, and that's a nice thought.  Whoops!  Digression again.) 

Today's post is from Christine who blogs at By The Numbers.  Her son, Thomas, was diagnosed two years ago with type 1 diabetes, and she's offered to tell her story here at SUM.  And, as always, I remain in awe of the parents of diabetic kids.  They're truly amazing.

*   *   *

Two years ago, at age 5, our son Thomas was diagnosed with diabetes.  We were blindsided.  I knew absolutely nothing about this disease, treatment, long term effects.  Nothing.  That first night in Children’s Hospital the nurse told us TJ would be receiving his first insulin dose and I wondered aloud what form that dose would take – a pill?  How many doses until he would be over this diabetes thing?  We were planning on a Celtics game the next day - would be out of the hospital in time?  Seriously clueless.Christine and her handsome family.

One week later I was home, in a fog. I had a binder full of information, a list of appointments at the Joslin clinic, and pages of questions.  I was like a new mother again – too many questions, too few solutions.  When my babies were little, I belonged to a new mother’s support group.  The women in that group were a lifeline, and I am lucky to call them great friends ten years later.  In search of something similar, I began scouring the web.  I didn’t find support groups, but I did find heaps of blogs (SUM included).  Those became my first peek into life with diabetes.

Slowly, the care became easier.  The questions became answers, the treatment became an insulin pump, diabetes became a part of our life instead of a massive intrusion.  Less and less I found I wanted the answers for right now, more and more I wanted answers for the future.  Although none of us can see the future for our children, I can imagine a sports event, a sleepover, a first dance.  I can’t imagine an adolescent and adult life with diabetes.  What would it be like for TJ to play sports, go on a date, go to college, get a job, all with diabetes in tow?  It’s the desire to know the answers to those “long-term” questions that have driven me to become like a voyeur of adults with diabetes, staring in at the lives of adult (and adolescent) diabetics (or PWD’s). 

The first summer after Thomas’ diagnosis, when things were still quite fresh, we were sitting on the beach when I noticed a mother on a nearby blanket.  I was watching at first because she was pregnant and in a bikini – a fashion statement I was never brave enough to attempt.  But then I noticed the tubing of her pump snaking around her bikini bottom.  And shortly after she took a test kit out of a little makeup pouch, tested, and promptly drank a juice box.  It was amazing to me – I had just witnessed someone treat a low.  Sitting right there, without the big to-do that ensued in my house.  I wanted to jump up and scream to all my friends, “look!  That lady over there is diabetic, and more than that she is LOW!”  It was then that I realized I was being rude – staring in at someone’s private life.
 
So, in an effort to remain socially acceptable, I have curbed my initial voyeurism a bit.  But, I do allow myself a few peeks into the lives of people with diabetes.  Although I stopped reading most of the blogs I found (I did have to go back to work, after all) I became addicted to SUM.  Kerri (unknowing – I’m a world class lurker) became a constant source of information about life as a diabetic.  While pondering a management or logistical question I will often remember back to a post I have read.  Kerri’s blogs about sleepovers, for instance, allow me to see the possibilities for Thomas to also spend a night with friends.

The two adults I know find themselves the constant recipients of diabetes related questions (How much did you bolus for that?  Do you ever go low while you are teaching? How often will you test now that we just finished three martinis? What kind of pump do you have? How often do you change your site?).  When I am with them, they must feel as if they are under a microscope, but they are both gracious, kind, and caring individuals who have answered question upon question without so much as a sigh.

So far, I’ve been lucky.  Kerri continues to update her blog daily.  Those amazing adults don’t run when they see me coming, and they continue to share ideas, thoughts, and personal information.  I might not be able to know what TJ is going through, and I certainly can’t predict his future, but because so many in the diabetic community are willing to offer a glimpse into their own adult lives, I have a better idea.

*   *   *

Thank you so much, Christine!  (And hi to Thomas!)

Guest Blog: Looking In.

Hello from my cruise!  (Only sort of, because I'm loading these guest posts in ahead of time, so right now I'm home with a gray cat circling like a shark.  But I'm pretending to be on the cruise, and that's a nice thought.  Whoops!  Digression again.) 

Today's post is from Christine who blogs at By The Numbers.  Her son, Thomas, was diagnosed two years ago with type 1 diabetes, and she's offered to tell her story here at SUM.  And, as always, I remain in awe of the parents of diabetic kids.  They're truly amazing.

*   *   *

Two years ago, at age 5, our son Thomas was diagnosed with diabetes.  We were blindsided.  I knew absolutely nothing about this disease, treatment, long term effects.  Nothing.  That first night in Children’s Hospital the nurse told us TJ would be receiving his first insulin dose and I wondered aloud what form that dose would take – a pill?  How many doses until he would be over this diabetes thing?  We were planning on a Celtics game the next day - would be out of the hospital in time?  Seriously clueless.Christine and her handsome family.

One week later I was home, in a fog. I had a binder full of information, a list of appointments at the Joslin clinic, and pages of questions.  I was like a new mother again – too many questions, too few solutions.  When my babies were little, I belonged to a new mother’s support group.  The women in that group were a lifeline, and I am lucky to call them great friends ten years later.  In search of something similar, I began scouring the web.  I didn’t find support groups, but I did find heaps of blogs (SUM included).  Those became my first peek into life with diabetes.

Slowly, the care became easier.  The questions became answers, the treatment became an insulin pump, diabetes became a part of our life instead of a massive intrusion.  Less and less I found I wanted the answers for right now, more and more I wanted answers for the future.  Although none of us can see the future for our children, I can imagine a sports event, a sleepover, a first dance.  I can’t imagine an adolescent and adult life with diabetes.  What would it be like for TJ to play sports, go on a date, go to college, get a job, all with diabetes in tow?  It’s the desire to know the answers to those “long-term” questions that have driven me to become like a voyeur of adults with diabetes, staring in at the lives of adult (and adolescent) diabetics (or PWD’s). 

The first summer after Thomas’ diagnosis, when things were still quite fresh, we were sitting on the beach when I noticed a mother on a nearby blanket.  I was watching at first because she was pregnant and in a bikini – a fashion statement I was never brave enough to attempt.  But then I noticed the tubing of her pump snaking around her bikini bottom.  And shortly after she took a test kit out of a little makeup pouch, tested, and promptly drank a juice box.  It was amazing to me – I had just witnessed someone treat a low.  Sitting right there, without the big to-do that ensued in my house.  I wanted to jump up and scream to all my friends, “look!  That lady over there is diabetic, and more than that she is LOW!”  It was then that I realized I was being rude – staring in at someone’s private life.
 
So, in an effort to remain socially acceptable, I have curbed my initial voyeurism a bit.  But, I do allow myself a few peeks into the lives of people with diabetes.  Although I stopped reading most of the blogs I found (I did have to go back to work, after all) I became addicted to SUM.  Kerri (unknowing – I’m a world class lurker) became a constant source of information about life as a diabetic.  While pondering a management or logistical question I will often remember back to a post I have read.  Kerri’s blogs about sleepovers, for instance, allow me to see the possibilities for Thomas to also spend a night with friends.

The two adults I know find themselves the constant recipients of diabetes related questions (How much did you bolus for that?  Do you ever go low while you are teaching? How often will you test now that we just finished three martinis? What kind of pump do you have? How often do you change your site?).  When I am with them, they must feel as if they are under a microscope, but they are both gracious, kind, and caring individuals who have answered question upon question without so much as a sigh.

So far, I’ve been lucky.  Kerri continues to update her blog daily.  Those amazing adults don’t run when they see me coming, and they continue to share ideas, thoughts, and personal information.  I might not be able to know what TJ is going through, and I certainly can’t predict his future, but because so many in the diabetic community are willing to offer a glimpse into their own adult lives, I have a better idea.

*   *   *

Thank you so much, Christine!  (And hi to Thomas!)

May 12, 2009

Guest Blog: Springing Into Action.

I'm in vacation prep mode BIG TIME (prep = mega spazzing), so I'm grateful that Tony Rose has offered to guest post here today.  Tony blogs over at Blogging Diabetes and has been living with type 1 diabetes since 1998.  He's been pumping for the last 3 years and is a diabetes advocate.  You can find Tony actively participating in the diabetes online community on Twitter (and you can also find me there, too).

He's got some insights on handling diabetes as the weather starts to warm, so take it away, Tony!

A guest post from Tony Rose.
 
*   *   *

As we come up on the nicer weather, many different activities start happening.  People are getting out more, there’s yard work to do, traveling, vacationing and just more all-around outdoor activities.  With these activities come some important considerations in order to effectively manage diabetes and stay safe.

Activity/Exercise
With more exercise and activity from outdoor tasks and enjoyment, comes a new level of difficulty with controlling blood sugar levels.  The first nice day of Spring had me outdoors doing some yard work that had a dramatic impact on my blood sugar.  I didn’t need nearly as much of a basal dose and found myself eating just to keep my sugar up.  The temporary basal rate on my insulin pump comes in very handy for yard work and that round of golf (walking).  Also, it might be a good time to look at and test your basal rate’s effectiveness.  This can be dome by testing your sugar, fasting for 4 hours and then retesting to see if your blood sugar level goes up.  Consult your doctor to fine-tune that basal.

Traveling
I have had diabetes for over 10 years and travel frequently.  Over this time, I have never had a problem going through airport security with diabetes supplies, like syringes, pump supplies, insulin vials, and so on.  Never have I carried a letter from my doctor saying that I am a diabetic and require medical supplies.  Sadly, I think the security people are accustomed to seeing the supplies and don’t question it.  For more detailed information check out the American Diabetes Association’s web site.  A very important consideration that is important to make is taking extra supplies with you.  When I travel, I typically take 1.5 times the supplies I would typically need at home.  You never know when a flight may be canceled or you could be stranded on a deserted island.  I found myself in a situation early on with the pump where one infusion set had lost its stickiness and I was down to my last one.  Having no supplies left is not a good feeling and can be avoided by a little proper planning.

Glucagon

To this day, I have never needed a Glucagon injection because my sugar was so low I couldn’t eat/drink to bring it up.  What I found is that they expire after a year or two.  I know it’s not rocket science to figure that one out, but it’s kind of like, out of sight out of mind.  Since I have never used it, I don’t tend to think about it that often.  As the fire department recommends in regards to smoke alarm batteries, I would say to check your Glucagon expiration date every year at a minimum to ensure it’s ready if you need it.

Reading
I am a big fan of reading when I can and try to do a little every night in bed.  As the nice weather arrives, more people may be lounging outside, at the pool or at the beach.  One of my favorite things to do while vacationing is to read by the water.  I just finished an exercise where I solicited feedback from either people with diabetes or have a family member with diabetes on what they think is the best book related to diabetes.  Here are a few that you may want to pick up for when you have some down time.

1.    Pumping Insulin by John Walsh and Ruth Roberts
2.    The Mind-Body Diabetes Revolution by Richard Surwit
3.    Know Your Numbers, Outlive Your Diabetes by Richard Jackson and Amy Tenderich
4.    Sweet Invisible Body by Lisa Roney
5.    Cheating Destiny: Living with Diabetes by James Hirsch

Thank you for this guest post opportunity and keep up the great work on SUM!

*   *   * 

Editor's note:  Thanks for guest blogging, Tony! 

April 17, 2009

Guest Blog: Diabetics Have Healthy Babies All the Time

Baby advice for diabetics, brought to you by not-doctors. Thanks to Jessica Hickok for offering to guest post today (I'm still in Tucson with the fabulous Dr. Val).  Jessica wrote a post about something that is definitely on the forefront of my diabetes mind, namely diabetes and motherhood.   Jessica offers up her thoughts on her diabetes pregnancy and advice on managing all the emotions.

*  *  *  

Quoting a line from the movie “Steel Magnolias” for the title of this post seems only fitting when guest blogging about what it is like to have babies and type 1 diabetes. 

You see, I am type 1 and currently 31 years old.  When I was 22, my husband and I had been married 2 years and decided it was time to fulfill our dreams and have a baby.  And the biggest piece of advice I can give to everyone who has seen the movie “Steel Magnolias” … it is important to remember that life does not always imitate art.

We did the planning and really worked hard on keeping my blood sugars regulated.  We spoke to my doctor and with an HbA1c of 6.8% we were given the green light to have a baby. <insert cheesy, romantic interlude here>.

However, when I found out that I was pregnant with my first child, I was both elated and scared at the same time.  I knew it was coming, but I immediately thought to myself “what if something goes wrong?” 

When other PWDs ask me about my child-birth experiences, I feel compelled to share my story and the following advice of what you can expect or should consider: 

1.    Do not let diabetes steal your thunder.
Be happy for yourself, you’re having a baby!  Just because you have a chronic condition, does not mean that you cannot enjoy the pregnancy and anticipation of motherhood.  Nor can you let your dreams be ruled by fear or guilt of your disease.  So you have to work a little harder at staying in a healthy glucose range, big deal, you’re going to do that anyway.

2.    Be comfortable with your doctor.
Being diabetic automatically puts you in a high-risk category.  However that doesn’t mean that you should lose sight of your basic rights as a patient.  Find a doctor that is comfortable with your disease and one that is willing to work with your diabetes doctor or endocrinologist. 

3.    Expect that your baby might be big. 
High sugars can spill over into the placenta feeding the baby and causing a large birth weight.  Both of my boys were born approximately 3 weeks early and the first one weighed 9lbs 12oz and my second was 10lbs 14oz.  No, I am not looking for a prize, but I do point that out just to prove that all of my complaining during pregnancy was justified.

4.    You may have to have a c-section.
C-setions aren’t bad, they just sound scary.  Yes, it will take you time to recover, but just think with your tightly controlled blood sugars that you had during pregnancy, your recovery time should go relatively quick. I had both of my babies delivered c-section and I wouldn’t trade it for the world…I did tell you that they were big babies, right?!

5.    Expect that your sugar readings will roller coaster after having the baby. 
While my hormones were bouncing around back into place the few weeks after having the baby, it caused my sugar readings bounce along with it.

6.    Diabetics have healthy babies all the time. 
Today, my first child is 8 years old and my second is 5 years old.  They are bright, healthy and so-far diabetes free. (knock on wood).  And the good news is that my story didn’t turn out at all like the one in Steel Magnolias.

I was lucky to have my insulin pump while I was pregnant.  And because there have been so many advances in diabetes technology (enter CGM!), I know that it has only become better and easier for PWDs to have children. 
 
The moment I held that precious newborn, my fears were all washed away.  For those amazing first moments of holding my new baby, I was not diabetic … I was a mother.

Disclosure from Jessica: Please keep in mind that this post is written purely based on my opinion and my personal experiences with pregnancy and childbirth.  I am not by any means a medical doctor.  Nor do I share my story as medical advice. Please talk to your doctor about your plans to have children.

Editor's note:  Thank you for posting today, Jessica!  There are guest blogger spots I'm looking to fill, so if you'd like to guest blog on SUM, email me!

April 16, 2009

Guest Blog: Self-Diagnosis.

Adam Kaye

I'm traveling to the Canyon Ranch Institute (and spa!!) this morning to give a lecture with Dr. Val of Better Health, so I've asked Adam Kaye to guest post today.  Adam and I have been corresponding by email for a while now, and I had the opportunity to meet him last week.  He's a type 1 diabetic and in medical school - so he understands what "in the trenches" means on plenty of levels.  

Take it away, Adam!

*  *  *

First year of medical school, we learn mostly basic science: anatomy, physiology—we learn how things are supposed to work. Second year is when things start getting interesting.  We learn mostly pathology—why things don’t work. We’re finally faced with the reality that sometimes, those little twinges of pain, that mild nausea, can, in fact, be real disease. During my second year, I was convinced, at different points, that I had a brain tumor, two blood clots in my lung, and six episodes of appendicitis. You pretty much have to force your mind to write it off as what I like to call “Second Year-itis.”   

So, cue up December 1, 2005. It is my second year of medical school. I’ve just come back from Thanksgiving break. My parents had complimented me on losing weight, and made mention of the fact that I almost single-handedly took down one of their Poland Spring tanks. I’m sitting in a lecture entitled “The Presenting Signs of Diabetes.” As I’m sitting there listening to the professor’s description of polydipsia (increased thirst), polyuria (increased urination), weight loss, and fatigue, my mind begins to go into its usual “Second Year-itis” routine … only I can’t shake the feeling that this is real.

If you’re reading this blog, chances are you can fill in the rest of the story. My first diagnosis in medical school was in fact myself.

Now fast-forward to third year of medical school. Third year is easily the toughest year for medical students, both intellectually and physically.  You leave the cozy confines of the lecture hall for the sterile floors of the hospital to practice your newly-learned skills as a diagnostician. The work can be, at times, very rigorous physically, as well as intellectually. I am lucky enough to be at a school where our “overnight call” (read: staying up all night) is kept to a minimum, but the demands of many of my rotations meant very long, odd hours. On my surgery rotation, for example, I would be at the hospital around 5:30 am to round on patients. Surgeries would begin at 7:00 am, sometimes lasting well past lunch. Surgeries could be scheduled in the afternoon, too, meaning we would have to wait until the late evening to round on patients again. With so much to do, and so many hours at the hospital…well, not much time built in for diabetes management. As opposed to the regimented, strictly scheduled second-year routine I had spent 6 months getting accustomed to (my only 6 months as a diabetic, mind you), I was now flung into the chaotic, regiment-less world of a hospital.   

Our fellow Type 1’s can relate to the fact that the world doesn’t wait for us. The rest of the world doesn’t want to wait 15 minutes to eat—they want to eat quickly and get right into the next patient’s room to keep the patient queue in check. The rest of the world doesn’t want us to scrub out from a surgery to check our sugar, they want me to keep holding traction so they can see the whole operating field. The patient will be alarmed, even in a noisy hospital setting, by the BEEEEEEEEEEEEP of my Dexcom, and will be even more confused when I have to excuse myself in the middle of a physical exam to check my sugar.
   
Reading other Type 1’s experiences on sites like Six Until Me, I know I’m not alone. I know we all deal with the frustrations of a world not waiting for us, of a world that just doesn’t get it — a world full of “real people.”  As a medical student, however, I’ve been given a crash course in how to deal with them.

I can only hope my experience has helped me become a better doctor — to understand my patients’ diseases and how frustrating it can be to deal with “real people” on a constant basis.  As doctors, we ARE the “real people”—we don’t know, for the most part, exactly what our patients are going through—but I at least have a head start in my training towards understanding the patients’ side of things.

Editor's note:  Thanks, Adam!  And more guest posts coming in the next few weeks!

Visitors since November 7, 2005