When I got my Dexcom CGM, the idea of sharing my numbers wasn’t difficult. I like the idea of someone else looking out for me. But he knew it was an adjustment. So the first time he saw on his watch that I was low, he quickly said, “Your blood sugar’s 63!” Then he paused and added, “Does it bother you that I tell you that?” I paused and said, “Not yet!” We laughed, and frankly no it’s never bothered me, whether he catches it before me, or not.
I took this photo just now while we were chatting. If you look closely you’ll notice a small bright blue something with white letters on it in his pocket. I took this photo because I realized that little something is a plastic container that holds four glucose tablets.
Several years ago, the husband decided whenever we went out that he would carry that container of glucose tablets. He told me, “I know there’s not much I can do to help you, but this is one thing I can do.” When I took this photo I realized that he carries that container around in our small one bedroom apartment too.
Thank you husband. And thank you all our type 3s (loved ones) out there who love and support us. There isn’t a type 3 day that I know of but maybe there should be. Those of us who have them know how lucky we are.
I read this in diaTribe this morning so wanted to share. A clinical trial, that will be done remotely, is recruiting 300 people with type 1 and type 2 diabetes and supplying them with continuous glucose monitors (CGM) for free.
The trial will last six months. Its aim is to see whether using a CGM, with personal support, helps people stay in target range more of the time.
I can, and do when asked, say a CGM is life-changing; its the most critical offering in devices since syringes.
Think about it, a glucometer tells you your blood sugar when you check; for most people a few times a day or week. A CGM tells you your blood sugar every 5 minutes, 24/7, and whether it’s stable, going up or down and how quickly. Being able to take action based on this data, already has shown to help many people with diabetes have better management.
The U.S. Centers for Disease Control and Prevention (CDC) has finally recognized the elevated risk of COVID-19 to people with type 1 diabetes (T1D).
This recognition now officially moves people with T1D into the 1c priority group, nationally.
The JDRF deserves credit in being part of this victory. Organizational leaders, representing JDRF research and advocacy, engaged extensively with the CDC, sharing the growing body of scientific evidence that adults with T1D are at an increased risk of severe illness from COVID-19, similar to adults with type 2 diabetes (T2D).
I contributed an article myself on this on a study held in the U.K. that found people with T1D, if hospitalized, were even more at risk of death than people with T2D.
This new prioritized access to vaccines will save lives and reduce the risks of additional COVID-19 complications for those of us with T1D. No matter what state you live in, it’s my understanding that you are now eligible for a vaccine regardless of your age. Hallelujah, and thanks to everyone who fought to make this happen!
Next February will be my 50 year anniversary with T1D. Certainly I am proud of having made it this far. Proud of all the hard work I’ve done. But this is not a rah-rah, ain’t it great post. Because I am a bit fearful when I think of what may befall me as I live more and more years with this condition.
Right now I’ve got a sprained thumb. A connective tissue issue. Makes typing an odious task I can tell you. Since my diagnosis I am prone to getting cramps in my calves, especially at night, I have had numerous sprained ankles and I have already had two frozen shoulders. One was worked out over three months by a chiropractor using heat and manipulation. The other required surgery. And my surgeon, who perfected the technique, told me I may get more on a timeline of 15 years apart. Thankfully, more than 15 years have passed since my last episode, but never say never.
But the truth is a truth we rarely speak about, hear or read about. Living with type 1 diabetes a long time, even with well-managed blood sugar, makes you prone to various conditions involving your body’s tissues, nerves, bones etc. Many people will have eye issues like retinopathy, others neuropathy, others trigger fingers.
This paper, The Musculoskeletal Effects of Diabetes Mellitus is 15 years old, but I just read it today. I can’t say whether any of the information in here no longer applies, or if we have better treatments than we did 15 years ago. But I can say, I think it’s worth a read. Even though I’m feeling a little sorry for myself at the moment, it helps just a bit to know if you run into an issue, you know it’s not your fault, it’s not necessarily that you didn’t work hard enough at this, and you know you’re not alone.
Last week I was honored to be part of a 3 day conference run by the World Health Organization. The aim of the three days was to glean from almost 100 people living with diabetes-participants how to, through our expertise and partnership, form, structure, govern and implement this new Compact. The mission of the Compact is to bring diabetes treatment to all who need it around the world. That includes: Prevention (focusing on the reduction of obesity in young people); Improved access to medicine and technology; Set global targets for diabetes to improve monitoring/accountability of progress.
If it seemed a bit obscure above, people living with diabetes will be actively involved in the development and implementation of the Compact. Our conference was abuzz with its participants’ expertise and it was especially lovely to be locked up in a room (okay zoom room) with some of the best and brightest diabetes activists and advocates whom I sorely miss.
The Global Diabetes Compact will be launched on April 14th in honor of this 100th anniversary of the discovery of insulin. That miracle, by the way, was performed by medical scientist Frederick Banting. So that no one would have to go without insulin, Banting then sold insulin’s patient to the University of Toronto for a mere $1.00. Well, we know how that worked out.
At its launch next month, WHO will bring together leaders in government, business and society to make commitments to people living with diabetes having access to affordable health services, medicine, treatment and also to deliver on the political commitments they made at the 2018 and 2019 United Nations General Assembly on Non-communicable diseases (NCDs).
After its launch the Compact will be focused on accomplishments it hopes to share at the second high-level meeting at the United Nations on Universal Health Coverage in 2023, and the fourth high-level meeting on NCDs in 2025. The number of people around the world who are expected to have diabetes in 2030, only nine years from now, is 366 million. That’s more than twice as many as today, 171 million.
Above one of the many carry bags from Sugar Medical Diabetes Accessories. This post was written by Carolyn Jäger, President of the company, whose fun, fashionable bags and accessories make living with diabetes a little easier – and a lot more organized.
Carolyn: “While I got type 1 diabetes at 13, it was when a friend was having a pancreas transplant, that I turned my once childhood insecurities into a company.
I was diagnosed with type 1 diabetes (T1D) at age 13, but I had been living in a household with T1D since I was eight, when my sister was diagnosed. My family was familiar with all the needles (and tears) and glucose monitors, which only made the news of my diagnosis more devastating. I knew enough to be scared and upset that I too would now have to give myself shots for the rest of my life.
Particularly, I hated carrying all my diabetes supplies in “that black medical bag” that comes with every glucometer. It made me stand out but NOT in the way a 13-year-old wants. I carried that bag with me every day, and everywhere – going to the nurse’s office to check my blood sugar, to sports practice, to a friends’ house – and I kept it hidden. It seriously clashed with my 13-year-old fashionista style! (Well, at least I thought I had style back then.) More than anything, I wanted to fit in. Forget it! I began to resent having type 1 diabetes.
Sensing my insecurity, my mother handmade a special bag for my supplies. It was stylish; it had pink fabric and green turtle patches sewn on it. The bag not only suited my presumed sassy style, but it made my life easier. The bag grew my confidence, I even grew comfortable enough to check my blood sugar in front of other people. My mother’s gift also started something I would continue: through the years I sewed my own fun diabetes supply bags for myself.
Then, after I had my first son, a close family friend who had serious complications from diabetes had a pancreas transplant. It rattled and changed me. I became over diligent about testing and tried to prevent myself from ever having a high blood sugar. I constantly corrected my insulin pump in fear of what complications could someday come my way.
I knew how important good glucose was in controlling diabetes and in preventing complications, and I fiercely wanted to encourage others to check their blood sugar more often. I never wanted to see anyone else suffer as my friend had.
When I shared my desire with my doctor, he explained that many people put themselves at risk because they don’t carry their supplies with them. They feel it’s “too hard to carry everything” or they’re embarrassed by the “medical” looking bag. I realized I wasn’t the only person with diabetes who felt self-conscious about carrying “that black nylon bag!” So I couldn’t be the only person who wanted something better than what was offered free with every glucose meter.
That’s when it dawned on me that I could help others take better care of themselves. I could encourage them to have their supplies close at hand by doing what I did growing up: create a line of bags that look the opposite of “medical” bags, that are fun, stylish and functional. And that’s how Sugar Medical began. Having had a career in retail, and as a buyer for a department store, it turned out I had good training to launch this company, in addition to my childhood bag making career.
Today, 32 years after my diagnosis, I am much more confident about living with type 1 diabetes. I grew to understand that I do not need to hide my illness from others: it is a part of me. I wear my pump proudly on my hip and I have no problem checking my blood sugar in front of people.
I wish I had been this confident as a teenager, but if I had, Sugar Medical probably never would have happened, and I’m glad it did. I, and all who work with me, want to make life a little easier for those of us who live with type 1 diabetes. I won’t be embarrassed to say, take a look at our bags and see if one doesn’t seem perfect for you. It just may be your inspiration to take your management to the next level.”
Sugar Medical encourages more frequent blood glucose checking with diabetes supply bags you will not feel embarrassed to carry – or show off! Sugar Medical gives back to the diabetes community donating yearly to the JDRF, Beyond Type 1 and the College Diabetes Network. We also participate in the walks and events hosted by the JDRF and ADA and support our own community in Midlothian, VA: last year we donated $1.5K to Chesterfield County Food Bank and plan to continue to support this charity.
“Happy anniversary” the husband said, walking into the kitchen where I was making my morning coffee. No, this isn’t our anniversary; this is my anniversary: 49 years with type 1 diabetes (T1D).
How do I feel? Reflective. So much has changed, so much hasn’t: note the finger prick above. Yes, I do use a continuous glucose monitor – Dexcom G6 – but today is the first day of a new sensor session and I had to do an ordinary finger prick while the sensor was warming up.
Having diabetes 49 years I often say I benefit from “Historical Gratitude.” Over these five decades, we have so much more information, better, faster, less peaky insulins, extraordinary tech and the bonding and support of online communities. I count all as blessings.
My early days with T1D consisted of originally being wrongly diagnosed – with type 2 (after all I was 18, not 8), urine stix to get a murky blood sugar picture that I’ve since learned was four hours old, and I’d get my blood sugar checked at a lab twice a year (I know, laughable, right? Glucometers would not come out commercially until 1982). The only guidance I had was a ‘diabetic diet,’ that instructed me not to eat candy bars, but I could pile my plate with potatoes or pizza (why not both?), and the commandment to take one insulin injection a day at 8 AM with a prescribed amount of insulin.
I’m sure the first decade living with diabetes my blood sugar was always around 200 mg/dl, because that’s what it always was when I first got my brick-sized glucometer. It required two minutes count down time and a 1/4 cup of blood on the strip. (Well, exaggerating slightly). Yes, historical gratitude.
I could never, during my first few decades with diabetes, have envisioned how this journey would go. I had no thought to write about diabetes, lecture about diabetes, give workshops to health professionals about diabetes. No, indeed. I barely spoke of my diabetes, to anyone. I didn’t know anyone with diabetes and I didn’t think anyone could understand the micro-management type 1 diabetes requires.
It wasn’t until I was thirty-eight years old that I began to let a few people in. That was largely prompted by an ex-boyfriend who, when I woke up in the middle of the night in his flat in London with low blood sugar, he rolled over and went back to sleep on me.
I groped my way through his darkened kitchen (certainly I wouldn’t turn on the light and disturb him, rather I should die of hypoglycemia), until I located a tin of shortbread cookies and sat on the floor, still in the dark, eating them. That was a defining moment: I agreed with myself that my diabetes was a part of me and deserved respect – and yes, we got rid of the boyfriend.
It was only when I was forty-eight years old that a confluence of events turned me in the direction of making diabetes my work. After 25 years in advertising and marketing I lost my job; the company went bankrupt. I also went to a diabetes educator for the first time after having diabetes for 32 years. I was getting married that year and now my health was important to someone besides me. I told my fiancé he should reconsider his decision to marry me as I couldn’t guarantee him an easy journey given my diabetes, but that same man who hugged me in the kitchen this morning said he wouldn’t consider such a thing. Funny, twenty years later he’s not just my life partner, but often my work partner.
I began this career interviewing people with diabetes to hear their story. Then I began writing books, then articles, including seven years on HuffPost. Then I zig zagged for ten years across the country speaking to fellow people with diabetes as a peer-mentor. Then I began to be invited to speak at conferences.
Each year I would say, “I’m in the first year of my twenty year overnight success,” “I’m in the fourth year of my twenty year overnight success,” “I’m in the ninth year of my twenty year overnight success.” Well, you get the idea. 2021 marks the eighteenth year of my twenty year overnight success. Apparently only two to go.
I didn’t set out with clear objectives when I began this diabetes work journey. It was actually the ever-supportive husband who said, “Why don’t you write about living with diabetes since you’re a writer,” and well, that set my boat out to sea, in the best way. I think my inclination to connect with people, to want to hear their stories and give back something of value made speaking on stages natural for me who grew up oh, so, shy.
I haven’t any regrets. I adore this rich and generous community of fellow patient advocates and health professionals – and I’m not done. Right now I’m working to help people with diabetes ‘let themselves off the hook’ by sharing how, through the lens of neurobiology and complexity science, we cannot “control” our blood sugar. It’s almost arrogant to even think we can if you consider the body’s countless hidden processes and life’s unpredictability and uncertainty.
When I share this with people who have diabetes they tell me they feel liberated. Since I believe the relationship between patient and health professional is foundational to doing well with diabetes, I am sharing this understanding also with those who treat us. It is far better to develop skills to succeed with reality than judge yourself a failure trying to do the impossible, and then give up.
As for the personal journey with type 1 diabetes, frankly, at this point I don’t know who I’d be without it. That doesn’t mean I don’t welcome a cure. But while diabetes doesn’t define me, as many say, it has shaped me. It’s made me healthier as I take good care of my eating, exercise and stress, probably made me more compassionate, definitely made me more brave and bold, and fulfilled my early desire to help people believe in themselves – I just didn’t know when I was twelve, writing that in my diary, that it would have anything to do with diabetes.
I recently found an excerpt from a letter I was asked to write last year to my diabetes from 48 years out:
Dear Diabetes, I wish I could go back 48 years! I’d tell that doctor who told me all the horrible things you’d bring me what’s happened. He scared me half to death but we’ve become good friends. Can you be a pain in the butt? You bet.
But I know taking care of you has kept me healthier. You’ve given me an incredible career writing books and articles and standing on stages across the world inspiring people. You sure want a lot of attention, but you can bring something positive into our life too. I wish I could tell that doctor that.
Amen. Three years ago I applied for my 50 year medal from the Joslin Diabetes Center and I told the husband where we’re going to dinner to celebrate. Ah, dining out. I have historical gratitude for that too.
This will be brief. I caught a two minute video put out by Dr. Bernstein, author of The Diabetes Solution, and long time advocate of low, low carb eating, on Facebook. He was talking about how the COVID-19 vaccine affected him. He said for almost two days afterward his blood sugar was exceptionally low, he had to drink 5 glucose drinks in a day. While he advocates getting the vaccine, he cautioned people to be alert and monitor your blood sugar.
Scrolling through the comments it appeared about half the people who have gotten the vaccine also experienced low blood sugar for a day or two after being vaccinated. A quarter seemed to go high and the remaining quarter seemed to have no affect. So, as all things diabetes, YDMV (Your diabetes may vary).
Just a word to the wise to monitor your blood sugar after the vaccine and be prepared for anything.