The 2nd Diabetes Hope Conference

Laddie_Head SquareIf you are an active participant in the Diabetes Online Community (DOC), you have read about multiple diabetes conferences that seemingly “everyone else” attends.  There are multi-day conventions such as Friends for Life and Diabetes Sisters and single-day events such as TCOYD and the ADA Expos.  Some like the ADA Scientific Sessions are huge and designed for medical professionals.  Others like the JDRF Reach & Teach U’s are sponsored by local JDRF chapters and targeted for children, adults, and families.

But you might live in a small town where nothing like this is available.  You might be terrified of not being able to afford your next bottle of insulin and the cost of attending a conference, especially one out of town, is lightyears beyond your reach.  You might be shy and fearful of immersing yourself in an environment where maybe no one will talk to you or you might have an embarrassing low.  You might have absolutely no interest in spending your time and money to travel somewhere and talk to a bunch of people who have diabetes.

At the same time, diabetes is a nagging and constant companion.  It takes no vacations.  Just when you think things are going well, it slaps you upside the head and reminds you just who is in charge. Maybe you have a few complications and the crippling fear of your next eye exam or blood test has hurled you in a deep dark cave of depression.  Maybe you’ve had this disease long enough to worry that your luck is about to run out and the future is lonely and terrifying.

I invite you to participate in the 2nd Annual Diabetes Hope Conference.  This is a 3-hour online webinar scheduled for Tuesday, May 20, 2014 from Noon until 3:00pm Eastern Time (USA).  There is no cost to “attend” this conference, but you must pre-register and space is limited.

The theme of the conference is HOPE.  No matter how frightening and severe diabetes complications can be and no matter how depressing it can be to live with a lifelong chronic condition, we all need HOPE.  One way to create HOPE for people with diabetes is to talk about our fears and learn from each other, the medical community, and pharmaceutical and device companies.

This is the point where I need to let you know that this conference is sponsored by Pamlab, the company behind the prescription-only nutritional supplement Metanx that can be effective in treating peripheral neuropathy.  Scott Johnson, whom many of us only know as a blogger, is a consultant to Pamlab and has been instrumental in the creation of the Hope conferences.  To read the story behind the development of the conference, click here.  Last year’s online program had about 250 participants and the expectation is to double that number this year.  Nothing about the conference is a marketing ploy and you don’t need to be concerned that your sign-up information will be used in any way by the sponsor.  Okay, that’s out of the way and let me tell you more about the Hope Conference.

Diabetes Hope_RedoThere are three panels for the conference, each lasting about one hour.  The panelists are all A-list diabetes professionals and bloggers/advocates.  For the price of a free ticket and three hours of your time, you have the opportunity to listen to and interact with some of the most influential people in diabetes.  The first panel is titled The Doctor Will See You Now.  Christel Marchand Aprigliano and Karen Graffeo will present questions to Dr. John Anderson, Immediate Past President, Medicine & Science of the American Diabetes Association.  Once you sign up for the conference, you are urged to submit questions for this panel.  What are the questions about the science of diabetes that you have always wanted to ask your endocrinologist?  What do you wish you knew about ongoing diabetes research?  What is the ADA doing for us?

The second panel is The Value of Blogging in Chronic IllnessKerri Sparling and Mike Lawson will talk with Pamela Katz Ressler, the co-author of the research study Communicating the Experience of Chronic Pain and Illness through Blogging.  This should be a fascinating discussion between three experts on the role of social media in healthcare outcomes.

The third panel will be Who’s in Charge? Who Says What? And Why?  George Simmons will dive into patient/doctor relationships with Dr. Jen Nash.  Dr. Jen is a practicing clinical psychologist, as well as author, consultant, and oh yes, a person with Type 1 diabetes.

What should you do?

  1. Put the date and time on your calendar.
  2. Get your ticket to participate.
  3. Check out the website to learn more about the panelists and the conference.
  4. Spread the word about the conference. The Twitter hashtag is #dHopeConf.  You can download graphics at this website.
  5. On the day of the conference, follow the link on your confirmation email to join the webinar.  You can use your desktop computer, your phone, or your tablet.

I participated in last year’s Hope Conference and already have my “ticket” for this year.  The “virtual panels” will be live streamed and the audience (that’s us!) can submit questions live to the panelists via Twitter using the hashtag #dHopeConf.

I’ll be there.  I HOPE to see you there also!

M-I-C-K-E-Y M-O-U-S-E

Laddie_Head SquareLast week was a very busy diabetes week for me. I started the week in Phoenix, Arizona with the Monday meeting of Valley Pumpers.  I headed back to Minnesota midweek and attended the JDRF-sponsored Adults with Type 1 program.  On Saturday I joined a group of Type 1’s who hang out every other month for a couple of hours at Panera Bread.  That’s a lot of diabetes fellowship for six days and is certainly not how I would have optimally scheduled my week.  In fact someone suggested (you know who you are!) that I needed a new hobby.  But I had a good time at each event and would have been disappointed to miss any of them.

I’ve never been one to Tweet my whereabouts and I don’t think that you want to read about the minutiae of my conversations at each meeting. I also don’t think you want to see my outfit or know what I ate or drank.  What makes these meet-ups blog-worthy is the juxtaposition of them with a Saturday post by Wil Dubois at Diabetes Mine.  Wil writes a weekly column called Ask D’Mine in which he thoughtfully and/or humorously gives answers to letters and questions submitted by readers.  Saturday’s letter was from a longtime Type 1 who was frustrated/offended/astounded by the “Mickey Mouse” cheerfulness that he perceived dominated the newsroom at Diabetes Mine.  He couldn’t understand the excitement at Diabetes Mine over new technology and new medications. He is plagued with many complications and seems trapped in a very dark place with his diabetes.

After assuring the gentleman that no one at ‘Mine finds diabetes to be fun to live with, Will eloquently explained the attitude of his fellow Type 1 writers:

There’s a difference between making hell sound like fun, and having fun with hell. We’re stuck in this nasty old broken-down house, and all we can do is choose how to decorate it. I cope with black humor. That works for me. Others among my peers are snarky, or analytical, or philosophical. There’s no right or wrong way to deal with the un-dealable.

We just manage, the best we can.

There is no doubt that those of us in the DOC have fun and revel in the absurdities of a life spent poking ourselves with sharp objects and dealing with the chronic frustration of trying to manage the unmanageable.  We learn from each other, we inspire each other, we support each other.  We laugh at each other, we cry together.  Occasionally we bug the heck out of each other.  Tweet after Tweet, blogpost after blogpost, Facebook photo after Facebook photo, and one day we discover that we have become friends.

I wonder how the gentleman would have viewed my week.  Could he have participated in any of these meet-ups and come away with a little bit of appreciation for his fellow Type 1’s and a little bit of enjoyment from having spent time with them?  Would an hour or two spent laughing, complaining, supporting, and learning with other pancreatically-challenged individuals have helped bring a glimmer of sunshine into his diabetes life?

I would have liked to have him join us at our Panera Bread lunch on Saturday.  He could have spent time with a group of people who genuinely like each other and feel that our lives are enriched by knowing each other.  He could have talked about diabetes, alert dogs, and Symlin and then learned about Scott’s new car, Ann’s two grandchildren due in December, and Allison’s first Minnesota winter.  I mentioned the Diabetes Mine article and asked: “If you knew that you would lose all of your online and offline diabetes friendships, would you choose to have never had diabetes?”  Without a moment of hesitation, Katie expressed the universal sentiment of “Hello, Life with No Diabetes, and Bye-bye, Diabetes Buddies!”  (You’re right, Katie, but you could have at least hesitated a moment before replying.)

Mickey Mouse Diabetics

The gentleman from Diabetes Mine would have also seen that although we have lots of fun, none of us is naive about the evils of Type 1.  How could we be after being told of Mike’s young friend who recently lost a leg due to diabetes?  How could we be when there was an empty chair at the table because of the death of Dean Devalerio this winter?  How could we be when we read about the eye problems that Kerri and Sarah are experiencing? How could we be???

The Diabetes Mine post was labeled Ask D’Mine: Anger Isn’t the Only Option (Part 1).  I am very curious to know what Part 2 will bring us on Saturday.

But until then, I’ve been called worse than Mickey Mouse….

 

Dexcom Cases: Big News!

Laddie_Head SquareIf you use the Dexcom G4 and have been searching for the perfect case for your receiver, I have great news for you!  Yesterday on Facebook I read that Tallygear has come out with a silicone skin that is similar to the cases that many of us use on our cellphones.

In the year and a half that I have been using the G4, I have invested more money than I care to admit trying to find the perfect case for my G4 receiver.  The black leather case provided by Dexcom is huge and extremely masculine.  Great if you want to wear the receiver on your belt, but incredibly clunky if you like to keep it in your pocket.  I tried a few cases designed for Blackberry phones and they almost worked.  But not quite.  A few other cases from Amazon were quickly returned or tossed in the trash.

I ended up using two cases that were okay, but not exactly what I wanted. The first was a case that I found out about in the Dexcom Users group at TuDiabetes.  It was designed by the friend of a Dexcom user and was manufactured with 3D printing at Shapeways.  It has been my main case, but the color has faded terribly.  Although my receiver has survived more than one fall while in this case, I’m not convinced that the case provides much protection especially as it has gotten older and more flimsy.  You can check out this case here.

The other case that I have used was purchased at Tallygear.  It is a lycra fabric case with a clear plastic front that completely encases the G4 receiver. It has a loop to which you can attach the carabiner clip and lanyard that are included with the purchase.  I use that case for hiking and will continue to do so. I loop the lanyard through my belt and feel confident G4 Case Discardedthat I won’t lose the receiver off the side of a mountain. Although it is not completely waterproof, it does protect the receiver from a quick dousing in the toilet.  (My friend Jenn of Sweet Zoo has firsthand knowledge of that fact.)  I personally don’t like how the plastic front sticks to the screen and it has never been my everyday case.  But it’s great for hiking, great to wear around your neck, and a good case that provides cushioning and protection for the receiver.

I am thrilled to see Tallygear is producing a silicone case.  This is what I have wanted all along and I will be ordering one right away.  According to Facebook and the website, red is the only color that is immediately available. Orange, purple, blue, and black are available for pre-order and should be available in a few weeks.  This case does not provide protection to the front of the receiver and I will use a phone screen protector cut-to-size just as I am using now.  The price of the case is $17.95 with a shipping charge of $5.95.  You can save 10% by using the coupon code DexG4.

To check out the new case and to order one, follow this link.  I will be placing an order for purple.  My Dexcom is pink and red just won’t work.  Black might look the best, but with granddaughters who love pink and purple, I’m going with the Double-P/Pink-Purple look.

Thanks Tallygear

Tallygear was founded in 2008 by the parents of a daughter with Type 1 diabetes and sells pump/cgm accessories in colorful, fun fabrics.  They are incredibly responsive to the needs of adults and children with diabetes and I encourage you to support them.  If you’d like to learn more about Tallygear, check out this 2013 post on Diabetes Mine.

I anxiously look forward to my new purple Tallygear silicone skin and will try to remember to post a photo when it arrives.  My number one wish is for the Animas Vibe to finally be released so that I no longer need to carry my Dexcom receiver.  But until then, I say thank-you to Tallygear!

If you explore the Tallygear website, you’ll also find the original G4 case in a rainbow of colors and patterns, a neoprene case which comes in solid colors and gives even more cushioning and protection, a Tallyband wrist or ankle holder, and of course the new silicone skin.  If a new Dex case isn’t enough excitement for you, check out the Tallygear decals for your G4.  Sometimes small things can add a big smile to your day.

Post-publication Note: After publishing this post, I found out that Pump Peelz makes clear screen protectors for the Dexcom G4 in addition to its other decorative “peelz”. I’ve ordered a set for $5 and they should be much easier to use than cut-up phone protectors because they are custom-designed. 

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Dexcom and Static

Laddie_Head SquareIn my recent post about a blogging vacation, I made a notation on my Dexcom tracing about static interfering with my CGM readings. This has actually been a significant problem for me this winter and deserves some explanation.

Most of us who use CGM’s and pumps have had frustrating phone calls with customer service reps who somehow blame a multitude of problems on the phases of the moon, user errors, and the ubiquitous static. This winter I had multiple Out of Range error messages with my Dexcom G4. My transmitter was out of warranty and was the first device replaced. The number of Out of Range and ??? alerts escalated and I had instances of not being able to enter calibration numbers. Dexcom has always been responsive to my calls and quickly replaced the receiver.

New transmitter. New receiver. Although the calibration errors were fixed, other problems persisted and I assumed that they were somehow related to my sensors. I use each sensor for 2-3 weeks and had been using the same lot number of sensors all winter. I know that the Dexcom manual indicates that Out of Range readings are related to communication between the transmitter and the receiver, not the sensors, but….

I called Dexcom and fortunately got a great technical support rep. We spoke a while and she started asking questions. What was I doing when the Out of Range problems happened? Walking the dog. Shopping at a Target. What was I wearing? Athletic clothes. Golf clothes. I don’t know because I didn’t think about it. Where was the sensor inserted? Mostly upper leg sites.

She indicated that she thought it might be a static problem. I wasn’t convinced but tried to stay open-minded. Because I had used the 7+ for several years and the G4 for over a year with virtually no Out of Range readings, it didn’t make sense to me that all of a sudden static was wrecking my CGM universe. I was surprised when at the end of our phone call, she indicated that she was sending me a new transmitter.

If you work for Dexcom, please quit reading now.

After the phone call, I immediately started wearing some of my cotton clothes. Magically I didn’t have any Out of Range problems. A few days later I wore my favorite synthetic fabric athletic pants. One dog walk later and I was Out of Range for several hours. I wore my golf shorts that are cotton, but have shiny polyester pockets and guess what. Out of Range problems.

After these episodes/experiments my last two Dex sites have been upper arms. No synthetic pockets full of pumps, CGM receivers, and glucose tabs electrifying my transmitter. No static. No Out of Range problems.

Arizona almost always has low humidity, but this year has been even drier than normal. Like most of the Southwest, rainfall has been almost nonexistent in 2014 and my area has only had measurable rainfall one time since January 1. For the most part my wardrobe hasn’t changed. I have worn the same two pair of REI hiking pants for almost ten years and never had problems with the 7+ or the G4 last year. My golf clothes and everyday capris are well-worn and experienced when it comes to diabetes. But the extra dryness Dexcom Avoid Static_Blackthis year must have thrown the G4 over the threshold of what the transmitter can tolerate. I have struggled with my skin this year more than in the past, so I think the G4 and I are both rebelling against the 2014 desert dryness.

Remember now if you work for Dexcom and didn’t quit reading before, please quit reading now.

I have not opened the new transmitter. The old transmitter has been working fine since I’ve been protecting it from static generated by mutant pockets of synthetic/electrifying and polyester/nylon materials. Should I feel guilty and call Dexcom to genuflect and confess my dual sins of synthetic fabrics and static electricity? Probably not. The new transmitter was sent to me with no conditions attached and I was not asked to return the old transmitter. I won’t abuse the possession of the new transmitter by selling it or giving it away. Like most people who use a CGM, I will sleep a bit better knowing that I have a back-up transmitter. Both times when I have begun using a new transmitter since starting the G4 in November 2012, I really didn’t think that there was anything wrong with the old transmitter. I never got a battery warning. I got things like ??? and calibration problems.  But if you have a new transmitter in your cupboard, they won’t talk to you about other problems unless you have started using the new transmitter. Both times the problems did not resolve until the receiver was replaced. So I think I prematurely sent two transmitters to medical trash before they truly bit the dust and I have never had the luxury of a back-up for even a few weeks.

I’m not trying to justify medical theft and if you work for Dexcom and are still reading (even though I warned you to stop!), you know where I live and can give me a call. Another somewhat moral issue I’ve been wondering about is whether I violate any trademark/copyright issues when I use images of medical devices in my graphics as I did today with the G4 transmitter. Because I am not profiting from my use of the image and it’s being used on a personal blog, I doubt that anyone is going to chase me down. Today I obscured the image big time with a sketch filter in Photoshop and don’t know whether that’s a good or bad thing. I will say that I really like today’s graphic and think it does a good job of illustrating the static issue.

I’m back in Minnesota now. Plenty of humidity with rain and snow. I’ll be curious to see how my Dex works this summer. I really like using leg sites in warm weather so that I don’t have a visible mess of the transmitter and dirty adhesive on the back of my arms when I wear short-sleeved shirts. I’ve given up sleeveless shirts forever. 60+ years of sun exposure and diabetes-related skin problems have motivated me to look for long-sleeved shirts that can be worn in warm weather. That will be a blogpost someday soon, but I’m still working with my dermatologist to figure out exactly what is going on and what, if anything, we can do about it.

Update on My CPAP Therapy

Sue May 2013_Head SquareIn my last blogpost titled Good Grief! Another Device to Wear at Night?! I recounted my journey from discovering I have OSA (Obstructive Sleep Apnea) to wearing a CPAP (Continuous Positive Airway Pressure) mask at night. It has now been almost two months since I started wearing the sleep mask and I am happy to report the results.

Before wearing the sleep mask, I would frequently go to bed late and wake up around 2 am. Unable to return to sleep, I would get up and get on the laptop or tablet, reading or passing time playing Words with Friends. Once after taking my turn with Laddie, the next day she texted me, “Do you ever sleep?” I replied offhand, “Not if I can help it!” That was my reality. At the time I didn’t realize that I had an actual physical reason why I wasn’t sleeping and it wasn’t just a norm for post menopausal life.

Now I go to sleep with the mask on, and when I do wake up during the night, I am able to return to sleep and feel more refreshed in the morning. My CPAP pressure has been increased once in the past month, from 6 to 11 cm, and that increase has reduced my AHI (Apnea Hypopnea Index) range from Moderate: AHI ≥ 15, but < 30 (events of stopped breathing) per hour to Mild: AHI ≥ 5, but < 15 per hour.

When I had my checkup in December and my doctor recommended I have a sleep study, he said that when I went on the CPAP therapy I would lose weight. I am happy to A Healthy Equationreport that I started using the My Fitness Pal app seriously in January and have so far lost 12 pounds. Sue from Pennsylvania, a fellow contributing blogger here, has been a tremendous help to me, giving me suggestions and encouragement. I don’t think I would have lost this much if not for her help. I also believe that a side benefit of better quality sleep has helped fulfill my doctor’s prophesy. I hope to follow in Sue’s footsteps by continuing to lose weight, getting to my goal, and keeping the weight off. Sue has successfully done all of this by using My Fitness Pal for 680 days in a row! Bravo Sue!!

What I Need/Want/Deserve

Laddie_Head SquareOn Sunday April 6 The New York Times published an article by Elisabeth Rosenthal titled Even Small Medical Advances Can Mean Big Jumps in Bills.  A friend without diabetes alerted me to the article and I read it along with the comments. For the most part I avoided social media for the rest of the weekend and had time to stew over my reactions to the article.

On one hand it was good to see Type 1 diabetes highlighted by the media.  Parts of the article were correct, but other parts made me feel uncomfortable and marginalized. I work hard to control my diabetes and I have been quick to give credit to my pump and CGMS for greatly improving my health and quality of life. I have no major complications and after my hospitalization at diagnosis in 1976, I have never been hospitalized except for childbirth. I thought that was a good thing.

Although I realize that my day-to-day medical expenses are high, I have been a “cheap” patient when it comes to acute care. Even my chronic care expenses do not surpass the total of my insurance premiums and my high deductible. Insurance companies are not making money on me, but they’re not losing their shirt either. That doesn’t mean that I could have gotten along equally well without insurance. My biggest financial benefit of having insurance is getting access to insurance-contracted rates. The insanity of our healthcare system is illustrated every time I see an EOB (Explanation of Benefits). Without insurance I would pay two or three times what my insurance pays for any procedure, lab test, or office visit. But that’s a topic for another day.

Most of you have already seen this excerpt from the article:

That captive audience of Type 1 diabetics has spawned lines of high-priced gadgets and disposable accouterments, borrowing business models from technology companies like Apple: Each pump and monitor requires the separate purchase of an array of items that are often brand and model specific.

A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts.

 If you want to understand at my outrage/disappointment/fear at these comments and the whole article, please check out Kelly Kunik’s letter at her blog Diabetesaliciousness.  For some other well-thought out responses to this article, check out Amy’s post at Diabetes Mine and Bennet’s letter at Your Diabetes May Vary. Or just explore the DOC and you’ll find other great posts on this subject.

I have a few things to confess talk about here. Throughout most of my diabetes career, I have been considered a model patient who is compliant and all of those other adjectives that can be tossed about. One of my endos once told me that “You can get anything to work”. In a sense, I can and have. But the idea of going back to NPH and Regular or a once-a-day Lente injection is terrifying. I rarely make it through a night without at least two or three alarms from my Dexcom that my BG is too high or too low. I use my pump for multiple .25 or .375 corrections every day. That’s impossible with a pen and extremely difficult with a syringe.

But I could survive if I went back to syringes and vials. I don’t know whether I would have more complications than if I had never gone on the pump. I have had approximately the same A1c while pumping that I had with Lantus and Humalog injections, but my highs are not as high and my lows are not as low. I spend much more time in my “target range” and I feel much better. I believe that I am safer because my insulin delivery is more precise and predictable.

Although I have used various CGM devices for over 5 years, the Dexcom G4 has been the most life-changing. In the last year and a half with my G4, I have not once needed my husband to help me with a hypoglycemia episode. I have not wandered around a strange hotel room in the middle of the night desperately trying to find something to eat and then trying to figure out how to chew and swallow. I have hiked hundreds of miles without requiring a Glucagon injection. Bad golf scores have been the result of my bad golf swing and not the result of BG readings in the 30’s and 40’s. My only interaction with firemen/paramedics has been taking my grandchildren to see the firetrucks and ambulance.

Is a pump and/or CGM a luxury “gadget” for me?  The first night in July without my Dexcom when the transmitter died, I woke up with a BG reading of 37. But at least I woke up. If my pump is denied by insurance, will an uninsured T1 diabetic get access to insulin? If I had to choose between my pump and my iPhone, what would I choose? (My Pump.) Should children get access to artificial pancreas technology while senior citizens can’t get CGM coverage by Medicare? If I lived in a country such as the U.K. with national health insurance, would I even qualify for a pump or CGM? What would my current health status and the cost of my care be if I were still checking my urine to determine my BG control and taking only one injection of Lente per day as I did in 1976? Would I still be alive?

I don’t know.

These are important questions.  As I get closer to Medicare age and our country moves closer to universal healthcare, I realize that not every decision related to my diabetes care with be in my favor. No healthcare system will ever have enough money to give Cadillac care to every individual at every stage of life with any health issue and despite unknown return on investment for that care. Some of the toughest questions that must be addressed are:

  • How do we measure value?
  • At what point are increased costs not justifiable in comparison to increases in quality of life and health status?
  • Are these decisions death panels or a reasonable allocation of limited resources?
  • Is it short-sighted to limit access to pumps and CGMS and then willingly pay for dialysis and amputations?
  • How do we decide between keeping 16-week premature babies alive while denying tests strips to millions of people with Type 2 diabetes?
  • Should there be an age limit on joint replacements and organ transplants?
  • How can drug and device companies develop better technology and improved pharmaceuticals if these products are not reimbursable expenses?

Measuring ValueI think that each one of us could add multiple questions to that list. The patient profiled in the NYT article concludes that “You want me to be able to afford good treatment…Because otherwise I end up disabled.”

Does anyone care?

Scary times, my friends with Type 1 diabetes.

Blogger Meet-up in Flagstaff

Laddie_Head SquareLast week I had dinner with three fabulous women. All of them have diabetes and all are well-known bloggers in the DOC. It was invigorating, it was fun, and it was truly an honor to spend time with these women.

We mentioned one guy a few times during dinner. No, none of us had a grilled cheese sandwich, but I bet you know whom I’m talking about. Yeah, it’s Scott Johnson. What does Scott have to do with this dinner? He is absolutely the reason that this meet-up occurred.

A little history here. I’ve been active in the Diabetes Online Community for about ten years. I’ve participated in message boards and read numerous blogs with various anonymous screen names such as Lathump or Casabby. In late 2011, I emailed Scott responding to an invitation he had made to help people in the Minneapolis/St. Paul area get connected with other folks with diabetes. In typical Scott fashion, he replied warmly and generously with the contact information for several groups. I met Scott in the spring of 2012 at a Type 1 meet-up at the Edina Panera Bread and felt like I’d known him forever.

Somehow meeting Scott brought the DOC to life for me. I saw him at a couple of other diabetes events and occasionally we emailed back and forth. I don’t remember how DSMA entered our relationship, but in January 2013 I emailed Scott that my aim for the winter was to listen to the entire archives of DSMA Live of which Scott was one of the hosts. DSMA Live was (and is) is treasure trove of diabetes stories and mid-winter I “met” Kate Cornell. Kate has Type 2 diabetes and blogs at Sweet Success: My Life with Type 2 Diabetes. Listening to the November 2012 interview, I was very impressed by Kate who seemed so composed and so knowledgeable. I started following her blog and filed it in the back of my mind that I wanted to meet her some day. More than once I would read something that Kate wrote and think that “Wow, this woman really knows her stuff and she says things that I might say”.

As the winter of 2013 progressed, I learned about DSMA Twitter Chat on Wednesday evenings. Twitter was a complete unknown to me, but I bravely indicated to Scott that I might try it out. Kerri at Six Until Me had previously published a post outlining the basics of Twitter and I followed her instructions and signed up. At my inaugural Twitter Chat, the first person who welcomed me and gave me the confidence to continue, was @JennMamaBear. I followed Jenn and was daily impressed with her photographs and Twitter skills. I followed her blog Sweet Zoo and also starting playing Words with Friends with her.

When I learned that Jenn was from Utah, I mentioned the idea of a meet-up in Flagstaff and indicated that I had always wanted to meet Kate. Jenn immediately jumped on board and said that she knew someone on Twitter from Flagstaff and her name was Jewels. Although I did not realize that Jewels was from northern Arizona, I “knew” her because of a November 2013 interview on the DSMA ‘Rents show. Jewels has Type 1 diabetes and blogs at SheSugar. One of her daughters also has Type 1 and Celiac disease, so her blog is an incredible resource for information on living a healthy life with both conditions. It is much more than a recipe source, but the low-carb gluten-free recipe that she recently featured for Crispy Cauliflower Crust Pizza is high on my list to try.

To make a long story short, these Scott Johnson-, DSMA-, and DOC-connections led to a dinner meet-up of four diabetes bloggers in Flagstaff, Arizona. In many ways this dinner was a reflection of both the kinship and diversity of the Diabetes Online Community. Despite our instant connection to each other and our thoroughly entertaining evening, our stories are really quite different.

Bloggers_Flagstaff

Kate was diagnosed with Type 2 diabetes nine years ago. She is an independent sort and with no “diabetes team” in 2005 to teach her what she needed to know, she searched the internet to learn everything that she could about diabetes. She combines oral meds with low-carb eating to keep her diabetes ducks in a row and is currently involved in a frustrating battle to convince her doctor to let her begin using insulin.

Jewels was diagnosed with Type 1 as a child and has the unique experience of being a Type 1 who is parenting a child with diabetes and celiac. She is a nurse, freelance writer, and health consultant who embraces a gluten-free lifestyle for her family. She is a Stanford Medicine X ePatient scholar and JDRF volunteer who balances her advocacy work with a crazy-active life spent biking, running, skiing, and participating in yoga.

Jenn has been living with diabetes for almost ten years. Her diabetes story is the ubiquitous tale of being misdiagnosed as Type 2 for six frustrating years before finally getting the correct Type 1 label in 2010. She is an animal lover who manages to make room for her husband and daughter in a house ruled by cats. She works full-time, is active in her church, is a JDRF advocate, and is a fun and enthusiastic travel companion.

A Type 2, a Type 1 diagnosed as a child and parenting a T1, a Type 1 initially diagnosed as a T2, and a Type 1 diagnosed as a young adult. That’s a lot of diabetes mojo at one dinner table.

Jenn and I went to the red rock country of Sedona on Wednesday. We marveled at the beautiful scenery while hiking (18,484 steps and 8.33 miles per my Fitbit), visiting local landmarks, and wandering through unique shops. Never far from the DOC, I had to take a photo of Jenn by the sign of the frog-themed Mexican restaurant where we had a delicious lunch. She needed to send it to Tina who knows of Jenn’s hatred of frogs and always sends her frog photos. Of course I “know” Tina from her September 2013 DSMA ‘Rents interview….

Sedona_Boynton

This blogpost is littered with links to many people in the DOC and once again illustrates how the diabetes community is an interwoven fabric of relationships and stories. Because I have provided photos, everything I have written is the absolute truth. That’s another bit of DOC/DSMA lore as Cherise pronounced last October after my NYC brunch with Alecia of SurfaceFine: “If there’s no photo, it didn’t happen.”

So yes, Cherise, this time there are photos and yes, it really happened.