Category Archives: Diabetes Online Community

Book Review: Still The World’s Worst Diabetes Mom

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I am a senior on Medicare and in a few weeks will have lived with Type 1 Diabetes for 46 years.

Stacey Simms is the mother of a son Bennie who has had Type 1 diabetes since the age of 23 months and is now a senior in high school. 

Stacey writes about parenting a child with diabetes and I write about living with diabetes. She is active on Facebook. I am active on Facebook. She is nice and supportive of other people affected by diabetes. I try to be nice and supportive of others. She is a podcaster and has written her second book. I…um…well…haven’t written any books although I was once a guest on the long-ago #DSMA podcast with Cherise, Scott, and George….

I was given the opportunity to read and review Stacey’s second book, Still The World’s Worst Diabetes Mom. In general I turn down most opportunities of free stuff because although I usually write favorable reviews, I rarely (or never) continue to use the reviewed product. It seems a bit fraudulent to advertise things to my readers that I don’t use. But books are different. It is a rare book about diabetes that I don’t learn from or at least get inspiration from. Plus I want to support the authors of  the Diabetes Online Community (DOC).

I purchased Stacey’s first book published in 2019, The World’s Worst Diabetes Mom. I enjoyed it and found her openness about mistakes refreshing and amusing. Most of her story wasn’t my story. I was diagnosed with Type 1 as a young adult and never lived as a child with diabetes, much less a toddler with diabetes. I never had a parent caring for my diabetes. Every day I give thanks that I am not the parent of a child or grandchild with diabetes. There was no Internet or social media for my first 20 years living with diabetes. I had no pressure to be perfect and I didn’t share my journey with anyone. I made lots of mistakes and still make lots of mistakes. For some reason, I find Stacey’s mistakes funnier than mine.

Stacey lives in the online diabetes parenting world where there are illusions of perfection and pressures to live up to that standard. Years ago someone on Facebook accused her of being an awful parent and things got a bit ugly. Rather than continuing the argument, Stacey embraced the criticism and came to terms with being the world’s worst diabetes mom.

Stacey is not a negligent or uninvolved parent. In fact she is the opposite. But she has firmly established her diabetes and parenting philosophy as “not perfect, but safe and happy.” This mantra has matured from her first book to her second as her son has grown up and she has grown as a diabetes parent. The second book chronicles a lot of her son’s journey from Mom and Dad being in charge to him being the pilot of his D-world. More of the D-mistakes and D-victories in this second book belong to Bennie and fewer to his parents. In my opinion that is exactly what a D-parent should hope for their child. But for sure it is not easy for a parent to step back and let the child manage the disease. Especially a disease where mistakes are par for the course and there are 42 factors that affect blood sugar results. 

My favorite part of Still The World’s Worst Diabetes Mom are the pages with words of wisdom that precede every chapter. The chapter titles in the book are standard topics for books about Type 1 diabetes. Things like School Days, Choosing an Insulin Pump, The Numbers Game, etc. But the introductory sentences are heartfelt and it is those blurbs that link Stacey’s journey as a parent to mine as a person with diabetes. 

 For example, although Chapter 5 is titled “Reframe Your Diabetes Parent Brain,” the introductory words shown below are incredibly relevant to my senior life with diabetes.

I simultaneously struggle with and accept my inability to be perfect with diabetes and have frequently wondered “How Good” do I have to be. I suppose this dilemma is even harder for parents who of course want the best for their child. What parent doesn’t want their child to have a perfect life with perfect blood glucose numbers! It is not my job to give parents advice except to remind them that with today’s insulin and technology, their child’s worst days are usually better than the best days of we seniors 40, 50, and 60+ years ago. And lots of us are doing fine. Their child can probably do well and be healthy even if things aren’t perfect. But complications do happen and unfortunately parents don’t have a Magic 8 Ball to predict the future. I applaud Stacey’s “not perfect, but safe and happy” philosophy. But that doesn’t mean I live in that spot on the diabetes perfection continuum. My endocrinologist says that I am doing great and my numbers are in range. But I find it too easy to remember the failures and not the safe and happy.

In summary, most of us in the diabetes community will read and enjoy Stacey’s book and come away being kinder to ourselves and to each other. For sure a sense of humor helps keep diabetes in perspective. Until then I recommend that you keep up the good fight for yourself and your children. Aim high but remember that “not perfect, but safe and happy” is a good place to be.

Still The World’s Worst Diabetes Mom will be available at Amazon and other book outlets on November 1. if you’d like to preorder the book, go to the Diabetes Connections Book Store. Use the promo code “spooky” for $3 off in October. 

Yes, I’m Still Here

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In recent years blogging has become passé in the Diabetes Online Community (DOC) and replaced by Facebook, Twitter, Instagram, and other platforms. I still miss the informative and heartfelt posts of my peers and would love to see a resurgence in real writing about life with diabetes. There is no doubt that over the past couple of years I have joined the decline. My most recent post was published 10 months ago! In general I feel as though over the last nine years I have said it all and no doubt I am now mired in laziness.

(There are a still a few active diabetes blogs in my Feedly Reader such as The Savvy Diabetic, Diabetes Stories, Diabetogenic, Embrace, and Scott’s Web Log. But there used to be well over a hundred.)

I am not 100% ready to abandon Test, Guess, and Go. Amazingly I still have readers and Google links my posts to searches for things like Tandem occlusion alarms. I periodically get emails from people wondering if I am okay since I haven’t written in so long. Once in a while I have diabetes friends on Facebook or in real life who tell me how much they miss my writing. I still pay over $100 a year to WordPress for a premium blog and the url. If I knew how to back up my content on a free blog and just pay for the url, I might do that. But it is easier to just pay the money and stay with the status quo.

There are things about my blog that should probably be updated. The name of the blog mostly refers to testing blood with a meter. Test, Guess, and Go. Test it with a meter, guess what the heck is happening, and then go on with life. The evolution of CGM technology from a cra*pshoot number to a mostly trustworthy technology has changed the landscape of my diabetes. I get numbers every 5 minutes and graphs with trends. Alarms vibrate or scream if I am going too low or too high. A Tandem pump adjusts my insulin in response to these numbers. I suppose that I could change the blog name while keeping the same url but then I would have to redo the header and graphics. I could change the WordPress theme but I am terrified that everything would go up in a puff of smoke and disappear. Remember I am 70 years old. Although I am somewhat tech savvy, I remember the early days of PCs when it was easier to get a new computer than figure out how to fix a problem.

If I really wanted to move my blog into the future, I would need to update the information provided in many posts. Quite a few links I previously shared are no longer active. Some of the information is outdated. For example I started my yearlong Countdown to Medicare series before CGMs were reimbursed by Medicare. In a nod to my present life, I did update my thumbnail photo to show my pandemic ponytail.

One thing that I would like to figure out is how to make my older posts more accessible. If someone wants to read my early posts (and some of them are really good IMO!), you have to click on a month and year. No way to start at the first post and read uninterrupted to the present. But will I do that? Probably not. 

I don’t know how much I will keep writing in the future. But I still have strong opinions on things diabetes. I wake up most days trying to do better and rarely get into too much of a funk about my d-life. My doctor thinks I am doing great and I work at accepting what I hope is “good enough.” I truly am in awe of how difficult Type 1 diabetes is to manage and how well most of us do. I feel a strong connection to my fellow seniors with diabetes and hope that I have words of wisdom for younger people affected by diabetes.

I am still here today. I have started working on another post to publish soon. After that I don’t know. Thanks for reading!  

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For those who read my blog from 2013-2015, I want to share the sad news that Sue from Pennsylvania passed away unexpectedly this spring after a fall. Sue wrote passionately about her crusade to get Medicare CGM coverage for her husband and I strongly believe that her emotional writings are one reason that seniors now have access to CGM technology. Thank you, Sue. You truly made a difference and I was privileged to know you. 

About Sue from Pennsylvania

Writings by Sue from Pennsylvania

The Best of Abby the Black Lab

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Last Friday my beloved Abby the Black Lab passed away. She was 13-1/2 years old and had severe arthritis and many other health problems. I sit here today mired in guilt as though I could have made her young and healthy again. She was the perfect dog and I miss her so much. We are not going to get another dog in the near future (or ever?) and I think it is going to take me a while to come to terms with my sadness.

Although she had slacked off in recent years, Abby the Black lab was a popular author on my blog. She did not have diabetes nor did she ever notice any of my high or low blood sugars. But she was a wise dog and not shy about sharing her wisdom about life and blood sugar dysfunction.

Abby the Black Lab Discusses DSMA Live

Abby made her blogging debut in 2013. Those of us who have lived in the Diabetes Online Community for a long time will remember the Cherise-Scott-George podcast which introduced me and many others to the movers and shakers in the DOC. More importantly Abby introduced herself as a diabetes fashionista of sunglasses and hats.

Abby the Black Lab Discusses Nutrition

Abby confirmed her status as an expert in fashion and food in this post.

For sure she knew that despite what your vet and diabetes educators tell you, dog food and vegetables do not taste nearly as good as donuts and potato chips. And sometimes a girl just doesn’t want to measure her food.

The Great Divide in the DOC

This is probably the best post ever published on my blog. Abby had incredible wisdom to state that we need to stop the arguments between Type 1 and Type 2 diabetes and unify into a powerful advocacy bloc.

“Although you seemingly-civilized people with Type 1 diabetes sometimes argue with those who have Type 2 diabetes, you pancreatically-challenged doofuses should remember that you are stronger together than apart.  Diabetes in all of its evil forms is the enemy and you should join hands and conquer it together.”

But Abby was a dog and she knew that there was a much more important battle than diabetes for dogs and cats.

“More importantly, we dogs and cats should toss aside our petty differences and stop the harassing hisses and barks.  With a united army of canines and felines, we can fight a cosmic battle against our common enemy.   A enemy who taunts and teases us in our own yards and through our own windows.  An adversary who seems to think that dominance is achieved through water-skiing videos.  We have seen the enemy and the enemy is……..SQUIRRELS!”

Abby the Black Lab Discusses Community

I loved this blogpost and the magic mailbox is still a popular fixture in my Arizona community. Abby had been slacking off for a while but was prompted to write saying: 

“Although I am overworked protecting my home from coyotes, rattlesnakes, and FedEx drivers, I suppose I can take a minute to discuss dog biscuits, mailboxes, and people with diabetes.”

Abby reminded us that community is important, maybe the most important part of the DOC:

“By dispensing magical treasures every day, this mailbox helps build a bond of community in the neighborhood. Community. That’s important…. I like to think that blog comments, tweets, and Facebook remarks are dog treats where you touch base with people and remind them that they are appreciated and that the diabetes community is important.”

Some of my readers will remember #dblogcheck day and most of you won’t. But viewing the diabetes online community, Abby summed it up fabulously:

“No one has ever complained about too much love, respect, and validation.”

That’s what the diabetes online community gives us:

Love.

Respect.

Validation. 

Thank-you, Abby. ❤️

 

Blogposts by Abby the Black Lab. May She RIP.

https://testguessandgo.com/2013/05/29/abby-the-black-lab-discusses-dsma-live/

https://testguessandgo.com/2013/07/15/abby-the-black-lab-discusses-nutrition-2/

https://testguessandgo.com/2013/09/19/the-great-divide-in-the-doc/

https://testguessandgo.com/2014/05/13/a-diabetes-poem/

https://testguessandgo.com/2015/03/10/abby-community/

A Looping Failure

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A few days ago I unscrewed the top of my RileyLink case, removed the tiny circuit board, and disconnected the battery. I put the box of pods back in the closet and retrieved my Tandem pump from the medical supply clutter box.

I am officially declaring my Looping experiment to be over.

If you don’t know what Looping is, it is a user-created app for an automated insulin delivery system that pairs an Omnipod or old Medtronic pump, a CGM, and a computer algorithm. If you want to learn more, read Loop Docs and check out the Looped Facebook group. Earlier this summer with files made available by the rockstars of the Do-It-Yourself community, I used my Mac laptop and a newly-acquired Apple Developer Account to create the Loop app on my iPhone. It was a miraculous experience for an experienced person with diabetes and a relatively inexperienced techie.

But I hated the pods. They often hurt and my insulin absorption was erratic. The occasional dark red/purple bruises were quite horrible and proof that diabetes can be a blood and gore sport. Some days the pods worked great. Other days I would bolus and bolus (or Loop would basal and basal) with seemingly no effect on my blood sugar. 

Previous to the opportunity to try Looping with an Omnipod, I was never interested in pods. I was convinced that they would be more awkward on my body than a tubed pump and infusion set. This feeling is why it is important to have CHOICE for those of us with diabetes. As much as I hate pods, there are people who despise tubes and love podding. I started using pods a few weeks before starting to Loop and quickly discovered that even changing pods every two days didn’t give consistent results. But I was excited at the possibility of automated insulin delivery and persevered.

In order to have success Looping, your pump settings must be close to perfect. Basal rates, bolus ratios, and insulin sensitivity factors are hugely important. My experience was that settings which worked well one day were abysmally wrong the next day. Because of my variable results with pods, I was pessimistic that I could get settings that would work consistently.

But it would be unfair to blame all of my Looping problems on pods. I was an emotional Looper and incredibly impatient when things didn’t go well. Instead of methodically problem-solving, I either randomly changed pump settings or in frustration went back to my Tandem pump for a couple of days. I was not good at relinquishing control over my insulin delivery and couldn’t move past 42 years of being the brain for my diabetes.

All along I have known that my future is with Tandem. In the last year I have been frustrated at my inability to use Basal IQ because of Dexcom’s delay in providing seniors with the Dexcom G6. But it will come and I am cautiously excited about the Tandem Control IQ hybrid-closed loop that that will be available late this year or early next. I thought Looping would be a good experiment for the months while I continue to wait for G6. 

Longterm using an Omnipod is incredibly expensive under Medicare in comparison to a tubed pump. My Tandem pump, its supplies, and insulin are covered under Part B where Basic Medicare pays 80% of the cost and my Supplemental plan pays the remaining 20%. Thus I have no out-of-pocket cost. Omnipod is covered under Medicare Part D pharmacy benefits. With my Cigna plan, the pods were Tier 3 with a $405 annual deductible and then hefty copays. Plus my insulin was provided under Tier 3 pharmacy benefits with copays and donut-hole repercussions. 

One reason that it was easy for me to abandon Loop is that prior to Looping, my diabetes numbers were mostly “in range.” Interestingly I compared 2-week Dexcom Clarity reports between Looping and my Tandem pump and the statistics were virtually identical. My hope with Looping was to reduce the mental burden of diabetes and it never really happened. I had some wonderful overnights where Loop prevented lows and highs and I woke up at a steady BG of 93. But I had just as many nights with constant Dexcom low and high alarms. In general I wasn’t one of the experienced and ecstatic Loopers who saw meaningful improvements in their diabetes life. And remember I was too impatient to keep working at it.

Will I try Looping again? Maybe, maybe not. There were things I loved about Looping: being in charge of my settings, targets, and alerts, controlling my diabetes from my iPhone and Apple Watch, and the potential to free up brain width that never rests with diabetes. The Looping community is incredible with help, expertise, and support given to all-comers (except the grouchy ones). Automated insulin delivery is the future but we are still limited by hardware, the speed of insulin, and the infinite complexity of Type 1 diabetes.

Today I am very comfortable with my decision to abandon Looping. I am relieved to be back using a tubed pump with less pain and somewhat more predictable results. There are definite warts using my Tandem pump with occasional occlusion alarms and non-customizable annoying alerts. But I am comfortable being back to “what I know.” I learned a lot while Looping and for sure gained more appreciation of how incredibly difficult it is to manage diabetes. I was once again reminded that while improvement is possible, perfection is not.

If you are interested in Looping, I encourage you to check it out. My experience was only my experience and not an indication of how the system will work for you. Lots of people are having great success with this do-it-yourself app and I am grateful for having had the opportunity to Loop and then the opportunity not to Loop.

Type 1/Type 1 Parent Conversations: Themes in Diabetes

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In the summer of 2014 Kate Cornell and I launched a series of blogposts called Type 1/Type 2 Conversations and we talked about weight, the great outdoors, friends and family, and food. Shortly afterwards my co-bloggers at the time, Sue from New York and Sue from Pennsylvania, roped their husbands into two conversations with spouses (here and here). I had hoped that the idea of conversations would spread into the DOC, but it never did. However in the back of my head I knew that someday I wanted to have a “conversation” with a parent of a child with diabetes. 

So here we are five years later and I recently had a meetup with Lija Greenseid (LEE-yuh GREEN-syd) of St. Paul, Minnesota. Lija is the parent of a young teen diagnosed with Type 1 diabetes 6 years ago. If you have followed news coverage about the Caravan to Canada to buy affordable insulin, you may recognize Lija and her Thelma & Louise-esque depiction as the “rule-abiding Minnesota mom steering her Mazda5 on a cross-border drug run.” Although there is no doubt that the issue of insulin pricing is extremely important, this blogpost is not about advocacy. It is about listening to the story of a mother of a child with Type 1 diabetes and sharing my experience as a senior who has lived with diabetes for 42 years. 

Rather than give a transcript of my visit with Lija, I decided that discussing the themes of our diabetes experiences would be the best way to share our conversation. I think for the most part our diabetes themes are the same; we just experience them differently. Hopefully that thought will make sense to you by the time I finish this blogpost.

Diabetes themes:  Fear, thriving, guilt, social media, hope.

Fear and thriving came up in the first 5 minutes of our conversation and we never strayed far from these topics. 

Laddie:  “Did you know anything about diabetes?”

Lija:  “No, just that it was bad and it was forever.” 

She went on to say that the doctor said “Oh, it’s not a death sentence” and in typical motherly fashion, all she heard was “death sentence.” Although initially terrified at her daughter’s diagnosis, she was quick to give credit to St. Paul Children’s Hospital for providing the family with a “thriving education” and “high quality information” rather than fear and gloom. They were trained in carb counting and multiple daily injections and sent on their way to battle hyperglycemia and hypoglycemia. They were encouraged to follow through with a planned family trip less than two weeks after leaving the hospital. 

Where did Lija learn the most about fear? You’ll probably guess social media and be absolutely correct. 

Lija: “There is so much fear now. In a large Facebook parent group I felt hugely stressed by the pervasive message that ‘You’ve got to get up at night and check your kid or otherwise he’ll die.’” 

Lija went on to express gratitude at “being rescued by people like Moira McCarthy and her little gang of these thriving parents” who invited her into a smaller more-positive Facebook group. This group that encouraged her to be comfortable letting her daughter spread her wings and participate in normal childhood activities.

When I asked Lija what was her biggest worry about diabetes, she indicated that it was how her daughter will navigate through the teen years, college, and young adulthood with diabetes. 

Lija:  “I think I worry most about the emotional effects. Getting through adolescence and young adulthood without getting burned out and not taking care of herself. I am much more fearful, particularly her being a girl, about body image issues and eating disorders.”

In regards to my Type 1, I don’t see much fear when I look back. I knew so little about diabetes when I was diagnosed that I didn’t know to be afraid. I should have been and still should be more afraid of lows.

Laddie: “I wasn’t afraid because the Internet hadn’t been invented yet to tell me to be afraid.”

Lija: “I don’t know whether people with diabetes get as much fear for themselves as parents do.” 

Laddie: “I think when you’re living the highs and lows, it is easier to just move on from moment to moment rather than being an outsider (parent) looking in.”

Lija asked me about my fears and the main one I have is when due to age or illness that I am no longer able to care for my diabetes. I am terrified of being in a nursing home and am convinced that no one else can adequately care for me. So I guess you could say that we both have worries that are influenced by stages of life: teenage and 20’s for her daughter and old age for me.

Lija is not incapacitated by fear and her diabetes parenting is positive. In the six years since her daughter’s diagnosis, she has been dedicated to not letting diabetes be a roadblock to anything her daughter would like to do.

Lija: “What is important is to keep her safe but to let her have as much freedom as possible.” 

I think Lija and her husband are doing a good job in this area as their daughter went on a multi-week international trip this summer with no parent chaperones allowed. The photos I saw on Facebook are testament to a child thriving with and despite diabetes. 

As I look back at my 42 years with diabetes, I like to think that I have thrived and not been held back by the diagnosis. But I do recognize that I have been changed emotionally and physically and that I would probably be a different person today (better or worse?) if I had not had diabetes.

Guilt and self-blame were themes that popped up frequently in our discussion. We  had similarities and differences in how we viewed these emotions. I was very open that every time things go badly with diabetes, I blame myself. Eating chocolate-covered donuts: my fault. Unexplained overnight high: my fault. Pump problem: my fault. Low following a rage bolus: my fault. I know and Lija also confirmed that those things weren’t my fault and I am not traumatized by guilt. It is just a background persona in my diabetes world. 

Lija’s parenting philosophy is based in doing everything to prevent her daughter from blaming herself for diabetes and out-of-range blood sugars. Meter and CGM results are just numbers to base treatment decisions on not successes or failures. I thought it was interesting that Lija’s main worry about guilt was for the future. 

Lija: “My biggest fear is that I didn’t do enough as a parent now and that’s she’s going to end up with complications.”

Laddie: “So it’s your guilt. I would say that you’re absolutely crazy.

Lija: “I know that, but if I’m really honest, what if she gets complications and I find out I should have gotten up more, I should have restricted her diet, I should have done whatever to make sure her A1c was normal while she was under my care? And the rational part of me says that is not the case and finding this balance (between physical and mental health) is important.”

Laddie: My endo says I don’t have to be as good as I am. But I don’t know how to do it any differently. And I eat too much cr*p food and wish I were better at that.”

Lija: “That guilt of not doing enough unites everyone who is touched by diabetes. I’m trying to battle against this.”

I believe Lija is taking some of these emotions onto herself so that her daughter doesn’t have to deal with them. But she admits that her daughter is very quiet and doesn’t share a lot about her diabetes feelings. She doesn’t hide her diabetes as I did for many years. She wears her pump on her waistband and her Dexcom on her arm. But I think that all of us with diabetes have an internal dialogue that we don’t share with anyone. Or maybe that’s just me?

Since I met Lija on Facebook, it was a certainty that diabetes social media would be a topic. We discussed the negatives: fear, criticism of others, and the unending pressure that perfection is not only possible, but expected. But we agreed that the positives outweighed all of the bad stuff.

Laddie: “I’m pretty open that everything I’ve learned about diabetes in the last 15 years has been online.”

Lija: “It’s all free. It’s just people who want to help others in the community…. The strong relationship with moms whom I’ve known for 6 years has taken me from being alone and scared to knowing that this is going to be OK. That support is so important.”

I concluded our discussion by asking Lija about her hopes for the future.

Lija: “My hopes for her are that diabetes continues to be something in the background. That technology and treatments such as beta cell transplants continue to make diabetes easier and easier.

And most importantly:

Lija:  “That she can continue to be an amazing kid.”

Although both Lija and I hate diabetes and wish that it had never entered our lives, our conversation ended on a hugely positive note.

Lija:  “Look at the great things it (diabetes) does. It brings people together.”

Conclusion: Shortly after I talked with Lija, I read an article by a D-Mom who is also a nurse and a PWD.  She wrote: “As someone who lives in three worlds, a person with T1D, a healthcare provider, and a D-parent, I can say, at this point in my life, parenting someone with Type 1 diabetes is the most difficult role of all three and much harder than I ever expected.”

For sure I believe that and have always been grateful that I have diabetes and not my children or grandchildren. Lija didn’t have that choice but if I had been a D-parent, she is the model of the type of parent I would hope to have been. 

RDBlog Week Day 1: Wildcard // Fitting In

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Today’s Topic:  Everything Else – Is there something we missed in this year’s prompts?  This wildcard is your place to add it in.  Not everything made our list so be adventurous and take us in a new direction.  Sometimes the everything wildcard is the seed of a new prompt for next year so let your mind roam and see where it goes.  Maybe mindfulness is on your mind?  Or perhaps you have a funny story?  We are all ready to hear the scoop on what is on your mind that was missed elsewhere.

Laddie_Head SquareI started blogging in the spring of 2013 in order to share my life with Type 1 Diabetes and to chronicle my journey towards Medicare. My blog title reflected the requirement to Test my blood sugar many times a day while knowing that diabetes was fickle and that I needed to Guess what would happen in the next ten minutes and the next ten hours. My attitude was and is to do my best and Go despite living with a health condition where sometimes 1 + 1 = 2 and other times equals 237 or 174 or 62. Although I stated in my first blogpost that I was living with several other autoimmune/inflammatory conditions, arthritis was not a big enough deal to warrant a specific mention. Five and a half years later I find that arthritis limits my life much more than diabetes. Sadly the list of favorite activities that I have abandoned or will have to abandon due to arthritis is growing longer. 

I have had Type 1 diabetes since 1976 and have been active in the Diabetes Online Community for almost 15 years. I had no problem finding my niche because my diabetes is “classic” Type 1 diabetes—whatever that means. The diabetes world used to be easily divided into Type 1 and Type 2 diabetes with a few pregnant ladies having Gestational Diabetes. But over the years diabetes social media has become more complicated as it has become apparent that there may be as many manifestations of diabetes as there are people with diabetes. In addition to Type 1, Type 2, Gestational, there is Type 1.5, LADA, pre-diabetes, MODY, Type 1 with insulin resistance, Type 2 with autoimmune components, and etc. and etc.

So here I am taking steps into the social media world of arthritis and finding myself in the “not sure where I fit in” category. I have a couple of online diabetes friends who live with rheumatoid arthritis and they have invited me into their arthritis online world. But I do not have RA and frankly have an easier journey of pain and disability than my RA friends. Interesting my “serious” and “systemic” arthritis is inflammatory spondyloarthropathy which can be every bit as debilitating as RA. But as the years go by it is apparent that the progression of my spondylitis fits very well with “undifferentiated spondyloarthropathy” as outlined in this article. My disease does not seem to have worsened much in the last 10 years and I continue to be very responsive to NSAIDs. 

Inflammatory spondyloarthropathy can have effects on peripheral joints of the hands, wrists, feet, and ankles. But all along my rheumatologist has emphasized that my peripheral joint issues are osteoarthritis. If I had doubts about his diagnosis, both a foot specialist and hand surgeon analyzed my x-rays this summer as “classic osteoarthritis.” In August I had surgery for the carpometacarpal (thumb/wrist) joint of my left hand. Foot surgery has also been recommended but I have chosen to do everything I can to modify my lifestyle to escape surgery. Unfortunately lifestyle modifications mean no more extreme hiking, no more long walks in nearby regional parks, and no more aerobics classes. I gave up tennis and pickle ball a long time ago. Fortunately I am able to participate in yoga and cycling classes at my local YMCA. I know that in the future swimming and water aerobics will be reasonable choices.

I used to feel out of place in the waiting room of my rheumatologist’s office. I don’t require a walker and for the most part feel strong and self-sufficient. But I look at myself at the gym these days. I wear lace-up wrist braces on both hands and last week added a knee brace for a tweaked knee. Unseen, but very important, are the orthotic inserts in my shoes. Then I add the diabetes paraphernalia of a continuous glucose monitor on the back of my arm and an insulin pump on my waistband. 

So I am not sure exactly how I will fit into RDBlog Week. But one thing about arthritis is that it is an equal-opportunity umbrella for many rheumatic diseases. Pain and disability don’t discriminate on whether or not you want to participate. I have found tremendous support in the online diabetes world and hope to find an equally supportive community in the arthritis world.

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If you’d like to check out other RABlog Week posts from today, click on this link.

Talking Types with Lloyd Mann

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I first met Lloyd Mann four or five years ago at a Saturday diabetes meet-up at a local Panera Bread. He was sitting at the end of the table with a big smile, an iPad, and a copy of his book about diabetes. He was discussing the possibility of being tested for MODY because of insulin signaling problems. A resident of South Dakota at that point, Lloyd was in Minnesota visiting family and had previously hooked up with this group through online friend Scott Johnson.

Fast forward a couple of years and Lloyd now lives in the town next to me. We have begun to supplement the every-couple-of-months group meetings with one-on-one lunches at the Panera Bread near his home. Yes, our relationship is built on Lloyd’s love of tomato soup and “Scott Johnson-esque” grilled cheese sandwiches along with endless cups of Diet Pepsi (definitely not Scott-inspired but Panera doesn’t carry Diet Coke).

Lloyd and I are close in age. In diabetes we are simultaneously far apart and eerily close. Lloyd has Type 2 diabetes and I have Type 1 diabetes. In most ways we are stereotypical depictions of our diabetes types. I was diagnosed with diabetes as a young adult in the mid-1970’s. I was hospitalized in an unquenchable-thirst skeletal state with high blood sugars and large ketones and have never had a day since then without injected insulin. Lloyd was diagnosed with Type 2 diabetes in 1994, took pills for many years, and then started insulin 11 years later. Lloyd’s insulin resistance is off the charts and on a daily basis he uses over 10 times as much insulin as I do. His story personifies the fact that Type 2 diabetes is a progressive disease.

So here you have two Medicare people with diabetes. Lloyd uses a Medtronic 723 pump and changes his 300-unit reservoir every day. When his warranty expires in January, he plans to move to a Tandem t:slim X2 pump and continue to change his cartridge every day. He likes the t:slim platform because unlike his Medtronic pump, it allows him to program a bolus larger than 25 units. I use a Tandem t:slim X2 pump. I change my cartridge once a week and rarely bolus more than 2 units at a time. Because Medicare CGM coverage does not exclude people with Type 2, Lloyd is in the process of obtaining a Dexcom G5 CGM. I use a Dexcom G5 CGM. Currently neither of us is using sensors provided by Medicare and we both wear an Apple Watch and carry iPhones. Lloyd and I are technology twins.

Lloyd and I are students of diabetes. Yeah, we are “Know-It-Alls.” You may like us. You may find us annoying. But we don’t care. We know our stuff and we want to learn more.

I recently asked Lloyd if I could interview him and we met at Panera two weeks ago. I did not record our talk so Lloyd’s answers are in my words with scattered quotations. I also throw in an occasional comment.

Lloyd, I know that your diagnosis story is in your book but please give me a short timeline. I was diagnosed with thyroid disease in 1980. Fourteen years later at age 44 I was diagnosed with Type 2 diabetes. What was your reaction was to the diagnosis?  I just thought “Oh no, one more pill to take!” Do you have a family history of Type 2 diabetes?  Both of my sisters have Type 2 but neither of my parents did.

How long have you had diabetes?  23 years.

How long have you been on insulin?  12 years since 2005.

How long have you been on a pump?  Since 2005. Less than one year after starting insulin, I convinced my doctor to order me a pump. I had used Lantus followed by a mixed insulin and wasn’t having good results. I did my homework and presented my doctor with a list detailing why the Deltec Cozmo was the best fit for me. Rather than specify Type 1 or Type 2 in the letter of medical necessity, he just put “Insulin Dependent” and I was immediately approved for pump therapy.

You indicated that you will be purchasing a new insulin pump in January. What features are important to you as you make that decision?  I need a pump with multiple basal rates. I currently use 8 different rates and my highest hourly rate at 3:00AM is 5 times as high as my lowest rate. Because of high insulin requirements, I require a 300-unit or larger reservoir and the option of taking boluses bigger than 25 units. I also need to be able to set an insulin sensitivity factor of less than 1 unit per 10 points. (As someone with Type 1 who is very sensitive to insulin, I want to put multiple exclamation marks after each of those numbers!)

I am planning to order a Tandem t:slim X2 to replace my current Medtronic pump. Although the  t:flex has a larger reservoir, I prefer the upgrade features, Bluetooth, and CGM capabilities of the X2. I am used to changing my reservoir every day and will continue with that practice. I expect that my total daily dose of insulin will go down using the X2.

Tell me about your decision to order a Dexcom G5 CGM. How do you think it will help you? I plan to use the G5 to help reset basal rates. Although I use more insulin now, the basal patterns are the same as I figured out using the Abbott Navigator over 6 years ago. I rarely get lows (insert another exclamation mark here!) but need a CGM for highs. I have always been forgetful and that is increasing with age. My  insulin mistakes are almost all related to forgetting to bolus and the CGM will alarm when I forget and my BG soars. I’ve been working with Dexcom since earlier in the summer and I am “waiting as fast as I can” for the arrival of my G5.

So Lloyd, what do you think of the Medicare ban on smartphone use with our G5’s?  “You can’t print that.”

What year was your book published and why did you write it?  Successful Diabetes Management was published in 2011 and I wrote it because I was doing well managing my diabetes and wanted to help others. I chose the cover from Amazon’s stock photos and the image spoke to me as “Follow the Path” to good diabetes management.

I had also been one of the many people at Diabetes Daily who knew Richard Vaughn and goaded him to write his book published in 2010–Beating the Odds, 64 Years of Diabetes Health. After Richard’s book was published, he contacted me and said “Your turn, Lloyd”.

Lloyd continues his mission to help others with Type 2 diabetes and his Diabetes Daily forum sticky note titled Type 2 in a Nutshell has over 16,000 views. He was previously a moderator at Diabetes Daily.

As we consider Type 1 and Type 2, Lloyd, how do you think our diabetes lives are similar?  Our daily tasks are the same. We count carbs, we bolus, we deal with highs and lows, we test BG, we change pump sites. And most importantly, we live with fear of complications.

How are our diabetes lives different?  My lows are not nearly as debilitating as yours and my risk of DKA is about 1/20th of yours. I think that people with T1 can eat a bigger variety of foods than a T2 aiming for tight control because they process food more normally and insulin works better. (Like many people with Type 2, Lloyd’s weight issues are intensified by high insulin use.)

What is the hardest part of diabetes for you?  “It’s forever” and “knowing what to do and doing it are two different things.”

What are your thoughts on Type 1 versus Type 2 diabetes?  I think that the naming of Type 1 and Type 2 leaves a lot to be desired. Type 1 and Type 2 are based on how you got to where you are but they don’t always address where you are. Type 2’s need to restrict carbs more than Type 1’s and we also have a problem with our livers. Metformin addresses that and I am still taking it after 23 years of diabetes. I think that my diabetes is more predictable than yours.

As this stage of your diabetes career, do you identify more with people with Type 1 or those with Type 2?  My day-to-day life is like a Type 1. My medical team thinks that I have completely quit producing insulin and that is unusual for Type 2. I have more in common with T1’s than with T2’s on pills.

Conclusion:  I asked Lloyd if he had any questions for me and he wanted my opinions on hiking and exercising. We talked about lows and he indicated that he used to get lows on older Type 2 medications and when he used to walk a lot. But he has rarely gotten lows since moving to insulin 12 years ago. Sometimes I think that my Type 1 diabetes is most defined by 40 years of lows: while driving, while taking care of my children, while mowing the lawn, while wandering lost at the mall, while peering up at concerned policemen and paramedics. Even with improved CGM technology which now mostly protects me from severe lows, my treatment decisions are always influenced by the possibility of lows and I might argue that’s the biggest difference between Lloyd and me.

Do lows make me have the “bad” kind of diabetes compared to him? No, because lows mean that my insulin is working. I can’t imagine the frustration that Lloyd must feel when oral medications in addition to hundreds of units of insulin daily are required to tame his blood sugar. Metabolic syndrome and insulin resistance are powerful opponents and I kind of wonder if my life is easier.

When I look at the differences between the types of diabetes, I mostly end up in the “I don’t know” and “I don’t care” camp. I don’t want to fight about labels, blame, stigma, cost, and who’s got it worse. I just want and need the appropriate care for my diabetes and I think that Lloyd would say the same thing. Diagnose me correctly and treat me correctly. That’s not asking too much.

In summary, I would say that the most fitting end to this blogpost is that no matter how you look at it, Lloyd Mann and I are just friends who both happen to have diabetes. Types don’t matter.

2016 Medtronic Diabetes Advocate Forum: Transforming Diabetes Care Together

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Laddie_Head SquareLast week I had the opportunity to attend the 2016 Medtronic Diabetes Advocate Forum in Northridge, CA. This was the first time I have been invited to such an event and I found it to be a great experience. The advocacy power in the room was palpable with representatives from 5 Latin America countries, 2 from Canada, and 14 from all over the US. I was proud to be the one with gray hair in the group photos. My social media skills were not quite as adept as those of the younger attendees, but I represent a growing population: seniors living with diabetes. I felt welcomed and respected by all.

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In the last two years Medtronic Diabetes (MDT) has been reorganized to move from a product-based pump and sensor company to a patient-centric model. The MDT executives with whom we met described the future role of MDT as a “holistic diabetes management company.” They were consistent and comfortable using phrases such as:

Inspired by people

Global human insights

Behind numbers are the patient

No two journeys are the same

Together we can make change

The Medtronic Vision was shared often and highlighted on walls throughout MDT headquarters:

TRANSFORMING

DIABETES CARE TOGETHER,

FOR GREATER FREEDOM

AND BETTER HEALTH

This idealistic philosophy envisions a table where all of the players meet with the patient as the focus. Doctors, pharma/tech companies, government, payers, and patients work together to achieve better clinical outcomes and high levels of satisfaction for patients. This is easy to draw on a white board, but unfortunately not the reality for most people affected by diabetes.

What is the role of Diabetes Advocates in this vision? I like to think that we are working to bridge the gap between how things are and how things should be. We are fighting to identify and throw the “Lack of” monsters under the bridge: lack of availability, lack of access, lack of coverage, lack of education, and lack of respect.

Bridge to Good Health 2

There is a huge gap in diabetes care between the “haves” and the “have-nots.” This disparity is significant in the United States and becomes even more staggering in a global view. In the conference room of advocates we had the mother of a child who was part of an artificial pancreas trial. In contrast we had representatives from countries with little or no access to diabetes education and advanced technology. Missing from the room were people from all over the world with marginal access to insulin and diabetes supplies.

The future success of a company like Medtronic is tied to providing products and services that deliver value-based quality healthcare. Positive clinical outcomes and patient satisfaction are worthy goals. Those are big words to describe what we all want: a happy and successful life with and despite of diabetes.

We advocates have a symbiotic relationship with companies like Medtronic. They need us as the faces and voices of people with diabetes. We need them for products, services, and the ability to open doors to decision-makers. I believe that their success results in better health for those of us with diabetes. Similarly, better outcomes for me should ultimately result in a healthier bottom line for them. Sitting at the table together gives both of us a better chance for success.

Transforming diabetes care together, for greater freedom and better health.

 

Disclosure: Medtronic Diabetes paid for my travel and hotel expenses to attend the forum. As always, my thoughts and opinions are my own.

Choosing the Dexcom G5—Again

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Laddie_Head SquareIn September I wrote a blogpost about the pros and cons of upgrading from the Dexcom G4 CGM to the Dexcom G5. Since my upgrade was free and I did not have to return the new and still-unused G4 transmitter, the decision to accept the G5 transmitters was a no-brainer.

Two weeks ago my transmitter warranty expired and I was once again faced with the G4/G5 decision. Most of the arguments from my September post are still valid, but probably my biggest concern was whether I liked the positives of the G5 enough to outweigh the increased cost of the transmitters. As most of you know, G4 transmitters are warrantied for 6 months but operate until they die—sometimes as long as a year after initial use. G5 transmitters are sold in pairs with each transmitter programmed to shut-off after 108-112 days (90 days + 18-22 days grace period).

Around the DOC I have seen many CGM users who have chosen to remain with the G4 for various reasons. Read Mike Hoskins’ post at Diabetes Mine for a good description of valid reasons for not changing. Recently on Facebook there have been discussions where some users are considering going back to the G4 as their G5 warranties expire. In most cases the motivation is financial although some users have been dissatisfied with the transmission range and signal reliability of the G5 system.

I have been using the Dexcom G5 since late February. Initially I was quite frustrated by the alert sound options on my iPhone and in typical fashion wrote a rant blogpost. At that point I was too new to the system to evaluate other pros and cons of the G5 platform.

Fast forward a few weeks and when once again faced with the G4/G5 decision, I chose without hesitation to remain with the G5 system. So what changed and why am I totally on board with the G5?

Dexcom G5 Choice

1. Although I never really minded carrying the Dex receiver, I quickly fell in love with not carrying it. I appreciate having one less thing in my pockets and one less expensive device to keep track of. I like how my BG numbers are displayed on the phone and how the G5 app allows me to key in calibration numbers rather than scrolling on the receiver wheel. I like the use of color in the app and the ability to see graphs in landscape mode. I appreciate the new iPhone “complication” that allows me to see my BG number without unlocking my phone.

2. When I use the receiver, I find the screen with the white background easy to read unlike the G4 screen with colored numbers and tracings on a black background. As someone who spends a lot of time hiking in bright sunlight, I found the G4 receiver impossible to read at those times when I needed it the most. (See “Sunlight and the Dex G4: A Bad Mix.”) I will admit that I dislike the glaring spotlight of the G5 screen when checking it in the middle of the night.

3. Although I am still not happy with the sound profiles on the iPhone, it is not bothering me very much. I am experimenting with using the receiver at night and my phone during the day. When I combine the musical Dexcom alerts with my Lantus reminder alarm in the evening, I feel like a digital music box.

4. Because I am a year away from Medicare and no CGM coverage, it is easy to argue that I should be hoarding transmitters and continuing with the extended life of the G4 transmitters. A great idea in theory, but it ignores the probable release of the Dexcom G6 in 2017 or early 2018. The G6 promises improved accuracy and reliability and I suspect it will quickly leave the G4 and G5 platforms in the dust. Because the G5 does not require a receiver, maybe it will be more economical than the G4. Or are you required by the FDA to purchase a new receiver every year?

Right now Medicare is a huge “unknown” in my life and I will soon be writing about my preparations and guesswork as I move closer to April 1, 2017. I hate the idea of hoarding supplies and technology that will become obsolete and possibly unused. But I am not optimistic about a change in Medicare CGM policy and am I crazy not to stock up on G4 transmitters?

5. I have not been bothered by things that could be considered flaws of the G5 system. I have experienced very few dropped data points. I have occasionally lost the signal on my phone, but that also happened periodically with my G4 receiver. The battery of my almost 3-year old iPhone 5 runs down more quickly due to the Dex G5, but not enough to be a real problem. I am still not satisfied with the lack of a robust vibrate alert on my phone, but I’m losing no sleep over it.

Summary:  As I am reminded whenever I write technology blogposts, I am indeed one of the “Diabetes Privileged.” I would of course prefer not to have diabetes and it is certainly not a “privilege” to live with this difficult-nagging-frustrating-serious-chronic health condition. But given that I do, I have many things in my favor. I am educated. I have good health insurance and am able to buy insulin and other required medications/supplies. I have a computer, an iPhone, and a connection to the Internet and the Diabetes Online Community. I have access to good food and a safe environment in which to walk and exercise. I am the beneficiary of the newest diabetes technologies and able to debate whether I want to live with the fabulous Dexcom G4 CGM or the newer and fabulous Dexcom G5 CGM.

And today I choose the Dexcom G5.

Continuing Connections: Pray for Caleb

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6th Annual Diabetes Blog WeekToday’s Topic:  The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year.  So let’s help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you’ve found or a new friend you’ve made.  Or pick a random blog off of the Participant’s List, check it out and share it with us.  Let’s take some time today to make new friends. To read other posts on this topic, click here.

Laddie_Head SquareI have met a lot of new people during the 2015 Diabetes Blog Week. I have added your blogs to my bookmarks and to my Feedly Reader content list. For sure if you keep writing, I will keep reading. I am going to briefly mention three blogs that I particularly enjoyed this week, all for different reasons. And then I am going to highlight one blogger from last year whom I believe all of you need to know about.

Completely new to me:  One new-to-me and relatively new-to-blogging writer whom I enjoyed getting to know this week is Frank of Type 1 Writes. Frank is a young man from Perth, Western Australia who is passionate about writing and even more passionate about diabetes advocacy. I think we will see a lot more of him in future years.

Not new to me but his blog is:  Brian (BSC) is super active at TuDiabetes and I have read his message board contributions for years. I was also pleased to meet him in person at the Diabetes Unconference in March. I didn’t know that he had a blog: The Trials of Type 2 Diabetes. To say Brian is a “know-it-all” is to trivialize his research and knowledge about diabetes, especially Type 2. I look forward to both reading his blog and using it as a resource to learn more about all kinds of diabetes.

New to me but not to the DOC:  When I read Marie Smith’s posts this week, I was blown away by her writing. Then I was blown away by her story. In addition to having diabetes, Marie lives with myasthenia gravis, has survived cancer, and deals with severe pain. Her writing acknowledges that pain but celebrates and affirms life. I will follow her blog Joy Benchmarks and have already started to read the first of her two books. Marie has been blogging for much longer than I have, so we have mostly just hung out in different corners of the DOC. But then I figured out we were following each other on Twitter (@cellobard).

What you all need to know when it comes to our diabetes community:  Last year during Diabetes Blog Week, I met a young blogger named Caleb. He was a well-spoken high schooler who was documenting his diabetes life interwoven with the stories of his two siblings who also have Type 1. Definitely wise beyond his years…. Fast forward to April of this year when Caleb saw a doctor for evaluation of severe shoulder pain. A mass was found and he is now facing an epic battle against Ewing’s Sarcoma. Ewing’s Sarcoma is an aggressive bone cancer that affects mainly children and adolescents.

Caleb needs the support and prayers of everyone in the diabetes online community. His blog is Type One Trio and there are occasional updates from Caleb and his family. Caleb is reassured that he will have the strength he needs because he is a Child of God. He recently quoted scripture that is giving him strength as he begins a battle that no one should have to face. Caleb is a child of our diabetes community and regardless of your religious beliefs, please pray for him.

“Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. 

 For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.”

 II Corinthians 1:3-5Type One Trio