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Looking Back: Taking the Plunge.

Summer is coming to a close over here and as we prepare to send Birdzone to kindergarten, I am spending the last few days of summer with my child velcro’d to me.  In an appreciation for family and for how mine handled diabetes as I was growing up, I wanted to look back at a post from five years ago where my aunt takes a stab (ha?) at giving me my insulin injection.   My immediate and extended family both took excellent care of me as a kid, and I’m glad that diabetes didn’t prevent sleepovers.

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I’m from a very big family – my mother is one of seven and my dad is one of five, for starters – so I had plenty of relatives who used to babysit for me when I was small.  Overnight visits at my aunts’ houses were part of the fun, and I always looked forward to them.  (Because – let’s be honest – I liked that they let me put makeup on them and do their hair.  My pretty aunts were like living Barbie Doll heads to me.)

Things changed a bit when diabetes came into the picture.  Sleepovers weren’t as easy to manage, because now we had to juggle insulin injections, blood sugar tests, and being on the lookout for high and low blood sugars – especially back in that first year when everything diabetes-related was so new to all of us. I was still a little kid, and now all this medical stuff, too?

When I was first diagnosed, I didn’t do my own insulin injections.  At the outset, my parents did my injections for me, but after a few months, my extended family started to learn.  I think about it now, having baby-sat for my nieces and nephews and little cousins, and I can’t even picture that learning curve.  I’m so grateful that my family came together to learn to deal with diabetes, instead of leaving my mom and dad as the only ones who were “in the know.”

One of my earliest memories with diabetes is of me waiting on my aunt’s couch while my mother tried to explain to my aunt how to administer my insulin injection.  And every time I recall it, it makes me laugh.

“You need to uncap the syringe, check for any air bubbles one last time, and then pinch up where you’re going to stick the needle.  Once the needle is in, you press down the plunger and pull the needle out.  No problem!”

My aunt was nervous.  “I pinch the skin and then put the needle in?  How fast do I put the needle in?”

“Pretty quickly,” my mom responded.  “Don’t think about it.  Just jab it in there, as gently as you can.”

“Okay, so pinch, jab, plunge, remove.  Got it.”

“Great, so are you ready to give it a try?”

(Mind you, the entire time they’re debating this, I’m face-down on the couch with my pants pulled down, waiting for the insulin injection to be given into my seven year old butt cheek.  Another truly classy moment for me.)

My aunt came towards me, brandishing the syringe like a hot poker.  She uncapped it nervously, pinched up the top of my hip, and said (and I remember this clearly), “Ready, Kerri?”

“Yessh I amph.”  I said into the couch cushion.

“Okay, here we go!”

She expertly stuck the syringe needle into my skin, and I barely felt the pinch.  And then she pulled the needle quickly out, letting out an “Oooh!  I did it!”

My mother sighed.

“You didn’t push the plunger down.”

“What?”

“The plunger.  To dispense the insulin?  You didn’t push it down.  You just stuck her with a needle and then pulled it out again.”  I could hear my mother trying not to laugh.

“Oh shit!” my aunt exclaimed.

I laughed, despite the fact that they were about to advance on me again with that syringe.

“You shed de esh word.”

Guest Post: Let’s Talk About It.

Diagnosed with type 1 at age 15, Kimberly Hislop has been living with diabetes for 18 years. She’s been an insulin pumper since 2009.  Kim is currently studying psychology with hopes of one day working with people who have been diagnosed with chronic illnesses. She’s been a guest speaker for pharmacists, nurse practitioners, and physician assistants, teaching about diabetic complications from a patient’s perspective.  Her writing can be found at Deniabetic, and today she’s rounding out my week of guest blogs with a really important topic:  diabetes complications and learning to live well despite their diagnosis.

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Being diagnosed with diabetes is scary. We quickly learn that we can overcome our fear of needles as we do what is necessary to survive. In my opinion, the hardest fear to conquer is the fear of the unknown. As a person living with diabetes we hear the terrifying word “complication” and our thoughts run down the black hole of “what ifs.” This black hole can be depressing and paralyzing for some. I truly believe that the diabetic community needs to start talking about complications. Most of us can name them but that is where it ends. If we could understand what the complications were and how to treat them it could possibly lower the fear factor.

Seems simple enough, right? So why don’t we talk about it?

To me, people with diabetes are truly afraid of three complications:  retinopathy, amputation, and kidney disease. I have had to deal with all three of these. I think it is so important to talk about these for a few reasons. When you can find someone who has SURVIVED these complications it gives you hope. You can see that there is life after complications. Also there is treatment out there. When you diagnosis complications early, there is a possibility of reversing it or at least stopping the progression. It is not necessarily a “done deal.” We need to talk about these things so that we can learn to be an advocate for ourselves. If it is a new diagnosis, you may not know what treatment is out there or even feel that you can ask for a second opinion.

My first complication was neuropathy. It came on five years after my diabetes diagnosis, when I was 20 years old. I did not know anyone who had this complication. It was incredibly painful and debilitating. I spent six months in a wheelchair and had horrible side effects from the medication. I felt shame, guilt, and really misunderstood. Mostly, I felt alone. I followed what the doctors told me to to but like with most complications, they can’t tell you for certain that you are going to be alright. I became suicidal because I couldn’t handle living with the pain. I spent a few days in a treatment program and from there started talk therapy on a regular basis.

For me, when I am diagnosed with a complication my first reaction is to figure out what I need to do to treat it, if it is an option. I think it is overwhelming to deal with my emotions while dealing with going to doctors and figuring out treatment.  And after a complication diagnosis, I always wonder why. Why me? Why did this happen? What caused it? The problem with diabetes is that it is a self-managed disease. Sometimes the only answer I can come up with for the question “Why?” is “because of me.” I think of all the things I did wrong such as,

I didn’t test enough.
I didn’t count my carbs right.
I didn’t cover with enough insulin.
I skipped my shot.
I didn’t exercise enough.

The hardest complication to face was my chronic kidney disease. I did not want to talk to anyone about it. It took me a year before I made it public and really I was forced to when I realized that I needed to find a live donor for a kidney transplant. I did not want pity from anyone. I did not want anyone to ask me if I was ok because in truth, I was not. I did not have the energy to fake it for the sake of others. I also felt like it was my fault. If only I had taken care of myself during my college years, instead of living with an A1C of 19% for two years. I felt like maybe I didn’t deserve a new kidney.

I was also incredibly freaked out about having someone else’s organ inside of me. I was sure that I would feel different. I wouldn’t be myself anymore. I even had pictures taken professionally about a month before my transplant as a reminder of who I once was. My guilt and shame kept me from reaching out to others who were transplant recipients. When I would go to the doctor’s office it would be filled with people 20+ years older than me.

I felt alone.

I know I am not the only one. The problem is that we feel such guilt and shame that we don’t talk about it. I don’t want to talk about my kidney transplant because I know that people will assume that I didn’t take care of myself. I don’t want to share about my retinopathy because clearly I caused that myself. If you have ever felt this way, raise your hand. The truth of the matter is … diabetes is not your fault. There are some people who take the best care of themselves and they do not suffer from any complications, some take the best care and do. There are those that ignore their diabetes completely and yet are never diagnosed with a complication. Sometimes there is just no explanation for any of this.

It is so important for our community to talk about complications and the fears associated with them. Instead of feeling shame and guilt, we need to stand together. When you are diagnosed with a complication it is imperative that you connect with someone who has gone through it. It can take away some of the unknown fear.  Every time I have been diagnosed with a complication I have felt “this is the worst thing that has ever happened to me.” In the moment, that is what it feels like. But somehow, you survive. It takes hard work both mentally and physically.

We need to discuss the importance of mental healthcare in all of this. It is only natural to feel depressed when diagnosed with a complication. The fact is, you can’t take the best care of yourself if you are not feeling good about yourself.  We need to figure out how to take the stigma of “it’s my fault” if you are diagnosed with a complication.

Complications suck but there is a life after being diagnosed with a complication. So … raise your hand if you want to talk about it. Let’s get this conversation started.

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:: raises hand ::  I have written before about my own experiences with diabetes-related complications, and I know that sharing that information was simultaneously terrifying but also empowering.  By talking about the thing I needed the most information about and the most support with out in the open, I was motivated to move past fear and step towards positive actions to improve my health.  If you are dealing with complications, or simply scared by the thought, please raise your voice.  You are not alone.  And with early detection, early intervention, and good mental health support, we can find a very good life regardless of the road we’re on.  Thanks for sharing your story, Kim.  It’s an important one to share.

 

Guest Post: Does Diabetes Tech Assist or Insist?

Several years ago, I “met” DCScribe (who remains mostly anonymous) on Twitter and he and I did not see eye-to-eye on much, aside from sharing the diagnosis of type 1 diabetes.  For a while, the lack of common ground frustrated me because I identify with and bond over experiences, but then I realized the alternative viewpoints he provided were not only important but essential to my growth as an advocate.  It is good for me to hear perspectives outside of my comfort zone; they help keep me realistic.  And when I had the chance to sit down and have lunch with DCScribe several months ago, it was really nice to confirm that two people who might butt heads constantly can still share a mutual respect … and a lunch table.

He was diagnosed with type 1 diabetes at 8 months and has lived with T1 for more than 50 years. Over the course of his career as a journalist, he has worked as a reporter in Washington for 26 years covering the White House and Congress as well as conflicts overseas, hurricanes including Andrew and Katrina, and every presidential election since 1988.  He’s recently embarked on a new career in global health that will take him to the frontlines in the battle against Ebola, malaria, AIDs and other scourges around the world.

And today, DCScribe is taking a turn here at Six Until Me to talk about diabetes technology as something that assists or insists.  Read on for more.

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The older I get the more I’m struck by how the decisions I make in so many facets of life are deeply informed and influenced by my long career refereeing soccer at the highest levels.  It’s even shaped my relationship with diabetes technology. And yeah, I can hear the rumbling. “Holy hell. Where’s this going? That dude ought to check his ‘sugar.’”

But it does. And here’s why. Reffing has helped me understand the difference between someone (or something) who “assists” and someone (or something) who “insists.”

It’s a question every diabetic should ask when making a decision about the technology you need (and don’t), how to use it and whether it means being in control or under control. Understanding where that line falls and enforcing it is central to my D management and my easy, stress-free life with the disease.

I speak only for myself, of course, and concede there might be gaps in my perspective. After all, only two other people outside my wife and kids and my doctor knows of my condition and my identity. My wife knows I use a pump but doesn’t know the brand or really how it works. I never share my BGs with anyone, though I’ll offer vague updates at home such as, “I’m gonna wait a bit to eat dinner.” It works for me; I’ve never had a single bad day from diabetes in more than 50 years. Sure, some days are better than others but not one has been truly bad or difficult.

There are lots of reasons, but an important one is my comfortable but always skeptical relationship with technology.

I have no idea if I’m different in that respect. But from scanning the Diabetes Online Community twitter feed and beyond, I wonder if enough people asking the question about technology’s proper place and power. (Here’s one place where it was asked and discussed publicly. It’s a cautionary tale and luckily I can’t ever imagine finding myself in a similar place.)

At the same time, I’m not immune from the pull of technology. I use a pump and have for 16 years (though my current pump is 7-years-old. Let’s face it: a pump is little more than a tricked-out syringe.) It’s why I got my first blood glucose meter in the 1970s and have used one ever since (though my one-and-only meter today is 9-years-old.) It’s why I’ve never used a continuous glucose monitor and never will. I’m constantly examining that distinction and that, along with my natural skepticism keeps me from chasing the latest, often imperfect, shiny object until its use and accuracy are proven.

This also fits with my belief that too much information can be more of a burden than a savior, especially if that information is imperfect. I wonder too if a fixation on technology diverts attention from proven and powerful “human factors.” For me, the basis of my success and easy life with D is rooted in discipline when it comes to food, making sure I’m physically fit and a refusal to ever use diabetes as an excuse for anything at any time.

Which brings me back to the beginning and “the pitch.”

In soccer, most games have three refs (though in a lot of my games there’s also a Fourth Official.) The Center Ref is the only one with a whistle. He or she prowls the entire field and is the one person responsible for fair play and safety; for keeping the official game clock and chaos to a manageable level. The Center Ref is the ultimate and singular authority. All decisions start and end with him or her.

The Center Ref uses his or her experience, training, knowledge and physical fitness to manage the game, navigate nuances and the many “gray areas” woven into the Laws of the Game and to ensure the rules are applied in a fair and consistent way.

But the Center isn’t alone. Along for the ride are two Assistant Referees, one on each sideline. Without ARs, the Center’s job is difficult if not impossible, especially on a regulation field that measures 120 yards by 80 yards.
The ref crew is a team in the truest sense, but to work well, everyone understands this: Good assistant referees never “insist.” Their job is to “assist.” That means there are times when the Center Ref will wave down a flag (or tell an AR through the headset) because the Center Ref is in a better position or has more experience or a different understanding of the larger picture.

Replace “AR” with “diabetes technology” and you get the idea.

That’s why I seldom follow the number my bolus “wizard” spits out. Its why, when my meter says I’m 70 mg/dL and I’m getting ready to ref a game that will require running upwards of seven miles and demand thousands of decisions, including a few that are game critical, I don’t hesitate. I appreciate my meter’s “assistance,” jam a granola bar in my mouth, wash down with a gulp of sports drink and go. But not always. Sometimes I simply walk on the field and start the game.

I seek assistance in carefully chosen places. That makes perfect sense to me. It doesn’t mean I’m anti-technology.

I’m a guy, so I’m hard-wired to get all tingly from even most dubious technological “innovation.” It should be no surprise that I would have instantly given up insulin before surrendering my satellite phone or the solar charger for my up-armored laptop when I was reporting overseas. In the early 1980s I had a very public and very serious relationship with my 30-pound Teleram “portable” computer that I happily lugged from one corner of the country to the next so I could transmit stories to the Mothership at the wondrous rate of 1,200 baud per minute.

And yet, I still use a 5-year-old iPhone and have zero urge to change because … it works.

Technology is great. I love it. I use it – a lot of it. But skepticism is more useful for me, as is enough patience to make sure the latest, greatest bit of technology works as advertised, and that whatever tech I use in my ride with diabetes knows its place, no matter how hyped or magical or shiny.

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Thanks for your perspectives, DCScribe.  And for the link to the oldest computer ever. 

Guest Post: LIVE! On-Air with Diabetes.

When I do speaking engagements, I get a little nervous about the arrow on my CGM before going on-stage, because a low during a presentation would be less than optimal.   How do you keep your wits when your blood sugar is tanking in front of an audience?  Live television anchors with diabetes know that feeling.  A few years ago, I met Cristina Frank through the #dsma Twitter chat and learned that she brings diabetes to LIVE TV every weekday evening, doing the blood sugar dance before every broadcast.  Cristina Frank is the evening anchor at KSNT News in Topeka Kansas. She anchors the station’s evening newscasts during the week at 5:00p, 5:30p, 6:00p, 9:00p and 10:00p, and today she’s taking the mic here at Six Until Me. 

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A lot has happened to me on-air. I’ve played basketball with Harlem Globetrotters, reported from the scene of bridge collapse into the Mississippi River, covered severe flooding of upstate New York and even did a creepy ghost hunt in a haunted inn. While all that footage is sitting in news stations’ archives – what hasn’t been captured on tape is my type 1 diabetes.

I was diagnosed when I was 11 years old. So, by the time it came to graduating college and entering the grand ol’ workforce – I had the diabetes basics down pat (or as much as I thought!). Carb counting, insulin ratios – no problem…but now, throw into the mix the stress of breaking news, an unpredictable schedule (covering a ribbon cutting one day to then switching to a downtown fire that you cover overnight), deadlines…and this was a whole new game plan that (9 years into the industry) I’m still trying to navigate.

One of those twists and turns – has been how to handle a low blood sugar on-air. Low blood sugars are already a monster in itself. Now, try throwing that hypoglycemic beast with solo-anchoring a show, bright lights and facing a camera that is broadcasting out to hundreds of thousands of people.

I’m the evening anchor for the NBC/ABC affiliate in Topeka, Kansas. I have a co-anchor – but sometimes I have to solo-anchor some shows. In those moments (and even when my co-anchor is around) I am vigilant about making sure a low doesn’t hit while I am front and center on the newscasts. I test my sugar multiple times before the show. I try to keep my levels in (what I consider) the ‘safe range’ and then I always make sure to keep my meter right by the desk. But, sometimes – diabetes is stubborn and likes to make sure IT has the limelight.


One of those moments happened a night I was solo-anchoring. I felt good. I was walking out to the studio holding onto my pile of hundreds of pages of scripts. I headed to the desk prepped for 90 minutes of news. Back-to-back I was going to one-woman anchor the 5:00p, 5:30p, 6:00p news.

My sugar before show time was a steady 134. I felt confident in that range. The teleprompter was ready to go and keep on track, microphone was clipped on – lets do this!

The 5:00p newscast was cleared….the 5:30pm newscast was solid. One more newscast left. That’s when it hit. I got a little lightheaded (maybe it was just the fact I had talked for an entire hour), I was STARVING (it was almost dinner break anyways), I started to get a bit hot (I am sitting under a plethora of BRIGHT lights). All that reasoning went out the window when I did the no-excuses meter check: 54.

I didn’t have time to run to my desk to get a juice box. The newscast was starting and the news music was right on cue. There was no hiding. There was no, “good evening, northeast Kansas….can you give me 15 minutes to have a juice box?”

Nope. It was game time to power through this. I had to focus. I looked at the prompter (maybe it looked a bit hazy and those words appeared to be dancing around like they were doing the limbo) but I read it the best I could. I knew what stood between me and that fruit juice blend – was 10 stories. If anytime the phrase, “the show must go on” applied – it was here and now.

As soon as we got into the first commercial break – I talked through my microphone to my producer: “Can someone please go to my desk and open the first drawer? I need a juice box in there AS SOON AS POSSIBLE … I’m feeling low.”

Within seconds, a director was already down the hallway to come to my sugar rescue. I had 5 minutes – commercial break + weather forecast. Before the meteorologist had made it back to the anchor desk to cross-talk with me … I was feeling better.

At the end of the show, I asked everyone, “did I seem off?” To them, they couldn’t tell the difference.

When I first went into this industry, I secretly worried having my diabetes out there would be seen as a weakness. Raising questions from employers, co-workers, in the hiring process….is this going to be a negative held against me? This time had once again proven all of those fears and concerns – did not exist.

I am lucky to have always worked in newsrooms where my colleagues have always supported me – and have many times, ran out to a newsroom desk drawer to get me a juice.

Life in a newsroom can be very hectic and ever changing – no two days are ever the same. Throwing type 1 diabetes into that mix can be even a little more challenging. Juice boxes are a staple in my desk drawer. I have a special basal rate I have set with my doctors to make sure my sugars are on-point during a newscast. Even when I was a morning anchor, I had a special basal setting for waking up at 2:30 am (yikes!), being at work at 4am, on-air 5-7am and then going to bed at 6pm.

My producers, co-anchor, news directors, heck – the whole station knows I have type 1 diabetes! Most importantly, the community knows I have diabetes. Kerri was the person who inspired me to put my type 1 diabetes-ness (is that a word?) out there. And that has opened doors.

It’s introduced me to kids, people and families who are all impacted with type 1. I’ve been asked to visit local camps for kids with type 1 diabetes. I’ve met a man who is biking around the country taking part in several JDRF Rides to Cure. I’ve bumped into other type 1’s where I see a “pump in the wild.” Those moments have turned strangers into friends asking about temp basal rates before exercising.

Keep on talking about diabetes. Keep on tweeting about diabetes. Keep on posting about diabetes. Keep on creating awareness on diabetes. You can guarantee, I’ll be watching and cheering.

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Thank you so much for sharing your story, Cristina, and I am really glad you’ve become such an integral part of the diabetes online community.  Cristina grew up in Massachusetts and is a proud fan of the Boston Red Sox (yay!)!  You can follow her on twitter @CristinaKSNT or on Facebook at facebook.com/cfrankKSNT.

Guest Post: Keep Calm Once They Cover Dexcom.

Today, Colleen is taking over my blog while I’m taking a few days off.  And I love her introduction bio so much that I’m pasting it in without edits.  Colleen is terrific, opinionated in a way I respect deeply, and today she’s talking about the importance of having access to a continuous glucose monitor (CGM) as she ages.  Take it away, Colleen!

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I signed up for Medicare this year. Deep breath. (I’m having a really difficult time believing that I’m 65.)

I’m not using Medicare (yet) because I’m still working. I like my job. I like my insurance. I like my five minute commute. But mostly, I like my Dexcom CGM (Continuous Glucose Monitor).

I always thought I’d be retired, lazing around, maybe playing some tennis.

Not really, I’m not lazy and I haven’t played tennis in a gazillion years. But, I really was looking forward to doing some volunteer stuff, especially working with kids who have learning difficulties. I’m a former Special Education teacher and I love seeing/helping kids to “get it.” Literally watching that invisible light bulb start shining when they would “get it.”

Instead, I’m working so that I can keep my Dexcom CGM.

Not to worry. I’m not suffering – I work as a church secretary, an absolutely delightful job!

Several years ago, when I started seeing a dermatologist, he explained that removing those things growing on me would be covered by my insurance because, “It’s covered by Medicare.” I was insulted and stated, “For heaven’s sake, I’m NOT on Medicare.” He then explained that if it was covered by Medicare, then insurance would pay for the procedure. “Oh…”

And now, turning 65 – my own light bulb has turned on. But it’s not going anywhere.

I remember talking with my primary care physician at an appointment once and saying how I work so hard to maximize my use of health insurance. I am careful to coordinate lab work with her and my endocrinologist. I keep up with scheduled appointments. I try very hard to be a wise consumer of health insurance. And she calmly replied, “You’re cheaper to Medicare if you’re dead.”

Well, that sucks.

Maybe – but – the cost of keeping me alive might be a sh**load more (Kerri said I could use bad words) [Editor’s interjection:  You can use all the words you’d like, Colleen.]  without my CGM.

And I truly believe that soon – Medicare will figure out that the expense of a CGM is whole lot less than the expenses of ambulances and ER visits and hospitalizations.

There is no public transportation up here in the woods so, I have to drive.

I almost always (I’m being honest) (95% of the time!) check Dexcom before I drive anywhere. I frequently have to make short trips during the day for work and Dexcom has certainly kept me in my office/the parking lot sipping on juice before leaving.

I hate shopping. Yes, really. Shopping irritates me. Shopping and going low is really annoying. The nearest real mall is over an hour away and there have been times that I’m pulled over at an exit or a rest area because Dexcom beeped at me. More juice … (Not easy in the winter when it’s frozen. Yes, I have glucose tablets, also.)

We get a whole lot of snow up here on our hill. And it’s not plowed every hour on the hour. There are times we literally cannot get out (or in). I’ve checked with our local police to ask – what would happen if I needed an ambulance in the middle of a snowy night? The answer – They’d hike up our hill with a sled to get me out if needed. Scares the sh** out of me.

Way back when I was diagnosed, I knew I would want a pump. At that time, you had to have been on MDI (Multiple Daily Injections) for a couple of years before they (insurance) would even think about approving a pump. By the time I was ready to start pumping, it wasn’t that difficult.

Thank you to everyone who advocated for pumps for all of us who want one.

Way back when, Kerri was one of those people writing about her fight to get a Dexcom CGM – with letters and refusals and more letters and more proof and finally – Dexcom. By the time I was ready to start using a CGM (I always swore there was NO WAY – have you seen the needle in those things?), getting a CGM wasn’t as difficult. (That needle? Not an issue.)

Thank you to everyone who advocated for CGMs for all of us who want one.

And now – those of us who are and will be the d-elders need to be able to continue using or begin using CGMs for better health and safer living. And your help is needed. You’re not just helping the older d-people. You’re helping yourself. Because you know what? We’re all leading healthier lives even with Diabetes because we work hard to stay healthy. If a CGM helps, we should all have access to that.

How can you help?

JDRF makes it easy. Go here:

Help others, and help your future selves –  and the children who will grow up – just by contacting a few of your state’s senators and representative.

It’s a win-win for all of us.

*   *   *

From Colleen:  “I’m Colleen and I have type 1 LADA – Latent Autoimmune Diabetes in Adults. Diagnosed at the age of 55 (yes, really!), I was just a tad surprised. My husband and I live and work in New Hampshire and even enjoy the snowy winters. We could be retired but, the need for health insurance has us both working at a local church. Yes, together. Yes, we’re surprised. No, we haven’t killed each other, yet.  Hope you’ll introduce yourself and it’s nice to meet you!”

Please say hello to Colleen, either on this post or at her blog, D-Meanderings.  For more on the goal of covering CGMs for Medicare, check out these links:

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