Going Virtual: The Future of Diabetes Care

This content originally appeared on Beyond Type 1. Republished with permission.

By Todd Boudreaux

Ashlyn Mills is a physical therapy assistant in an outpatient setting in Florida, working with people with orthopedic and neurological disabilities. She was diagnosed with type 1 diabetes when she was 19 years old. Ashlyn recently started using DreaMed’s telehealth platform to see an endocrinologist, and spoke with Beyond Type 1 about the shift to virtual care.

Beyond Type 1: To start, can you tell me about your diagnosis, and how you originally managed your diabetes?

Ashlyn Mills: I had a strange diagnosis, it was caught a little bit early. I was already being followed by an endocrinologist for some other issues and we started noticing some higher blood sugars on labs. My A1c wasn’t incredibly high so they put me on a Dexcom and started monitoring my blood sugar so they could see what kind of patterns I was experiencing. My fasting blood sugars crept up higher and higher and they went ahead and added basal insulin at that point. I was insulin dependent about three months after my diagnosis.

They diagnosed me with type 1 from the start. They did say that it looked like a latent onset (LADA), but it was pretty clear that it was type 1 from the get go. I was using insulin pens at that time.

Tell me about your treatment since diagnosis.

I live in a rural area in Florida. There’s not an endocrinologist around here. I had been seeing an endocrinologist at the Mayo Clinic in Jacksonville, which is about a two and a half hour drive for me, and that was just because that’s who came recommended by my primary care physician. I was diagnosed at the Mayo Clinic and followed up with endocrinology there for the first two years after my diagnosis. The nurse practitioner that I was seeing there actually left and came to a clinic that was about an hour and a half from my home, and I had a good rapport with her. I went ahead and followed her.

Her and I had come to the understanding that it was difficult for me to see her every three months, so instead I saw her every six months. It became a little bit of an issue for me being able to talk with someone in between if I had issues, which is how I found DreaMed. I could find somebody to bridge the gap between those six months that I’m going without seeing a doctor in person. Now, I’m able to communicate with someone whenever I want to.

How have you been keeping up with your job as a healthcare worker living with T1D during the pandemic?

Florida did a stay at home order back in March. About mid April my employer decided, “We’re going to send everybody who is high-risk home.” I worked from home for about two months and then the numbers started looking better and they sent me back to work. Now, I’m working in the clinic every day and it is nerve wracking. I’m still working but I’m quarantining from my family right now because I was exposed at work.

I go through phases where I feel like I would be fine if I got it but then I have bad blood sugar days and I’m like, “This is it. If I get COVID I’m doomed because my blood sugar was over 200 mg/dL all day today.” Overall, I think I would be okay but I do worry about being hospitalized. I think that’s my biggest fear with the whole entire thing is ending up in the hospital with no family there to be with me. I pray every day that I stay well but I am working and the numbers in our county are rising quickly

How did you find out about DreaMed and what was that process like getting started?

When I was sent home and started doing telehealth with my patients I realized this is easy, there shouldn’t be any reason why I can’t do this.

At the time my endocrinologist’s office was not offering telehealth appointments, even in the midst of COVID-19. I started doing a little bit of research and found DreaMed. I went on the website and signed up for more information. My experience as a provider doing telemedicine is what led me to push to try to find someone that could do the same with me as a patient.

How does DreaMed work?

They asked me what state I lived in and they connected me with an endocrinologist here in Florida, Dr. Kava. I set a telemedicine appointment with her and she spent about an hour with me on that first call. I think you can view it as a replacement service for your current endocrinologist or just an add-on to your current care.

Was it surprising your appointment lasted for an hour?

Dr. Kava would have spent as long as I wanted her to with me. My normal appointments in the clinic, I drive about two hours to be seen for maybe 10 minutes. Most of the time there’s not too much to discuss at those appointments you just make a few changes, but she asked all about my personal life, including my mental health during the pandemic. She really seemed invested in me as a person, too, not just diabetes.

She nitpicked my data because I told her I’m a little bit of a control freak. She said, “If you want tight control I’ll help you.” She spent a long time combing through all of my graphs and figuring out what we could do to get things even tighter than they already were.

Has any diabetes provider before Dr. Kava asked about your mental health?

That’s the first time I recall that happening. When I was first diagnosed I had a diabetes educator talk with me about mental health and diabetes to prepare me for what may be to come with my mental health. They assume if your control is good you’re doing okay with your mental health, but that’s not always the case. I don’t necessarily quit caring for myself when I feel burned out but that doesn’t mean I’m not struggling mentally with it.

It was Dr. Kava spent a good bit of time talking with me about mental health and diabetes and how my mental health was doing with COVID-19 and all of that so I was very impressed with that.

Were there any other specific suggestions that stuck out to you?

Most adult endocrinologists seem stuck in the stone ages a little bit. Dr. Kava looked at my data and she said, “You’re on a closed loop system. The system is going to suspend you if you’re going to go low. If you want to stay below 140 or if you want to stay below 120 I can help you get your settings there.” That was the first time that I had ever had someone be willing to be that aggressive with my care, but I felt like she was totally game for whatever I wanted her to help me do.

Do you think that you’ll continue using DreaMed?

Yeah, ideally I would like something to bridge the gap right now. Although my endocrinologist has started offering telemedicine I’d like somebody that I can talk with through DreaMed and not feel like I’m bothering. When you’re bothering your endocrinologist a lot of times you’ll get an unexpected bill; it would be nice to pay the monthly fee and have somebody at my fingertips whenever I need them. If my endocrinologist quit offering telemedicine I would love for DreaMed to replace my current endocrinologist. As much as I love her it’d be nice to do telemedicine and not have to drive two hours to be seen by someone.

Do you have any advice for someone living with type 1 who doesn’t currently have access to a local endocrinologist?

I just think if anyone’s trying to figure out what to do in the time of pandemic or just tired of driving to see an endocrinologist as frequently as they do, I would suggest looking into DreaMed. They’re currently offering a three-month trial. I have no dog in the fight, I’m not being compensated to say anything about them. You have nothing to lose. They are very honest and I think it’s worth giving a try.

Source: diabetesdaily.com

Top Ten Myths About Peer Programs

I have been living with type 1 diabetes for almost 30 years (this October 19th marks my 30th diaversary) and I’ve worked in the diabetes industry for over 20 years. I’ve primarily focused my career on community education and peer programs and have seen time and time again how beneficial they are. But I’ve also heard, for a variety of reasons, that many are reluctant to take part in a community or join a group. And we think it might be due to some misconceptions or myths about peer programs. Here’s our list of the top ten myths about peer mentorship!

Myth #1: My healthcare team is the most important part of my diabetes management. 

YOU are the most essential part of your diabetes management. You manage your diabetes for 525,600 minutes per year. While your healthcare team is vital, research suggests that a peer community is just as important as an educated healthcare team.

Fisher et al. conducted a systematic review that analyzed data from peer support for diabetes management studies and concluded that,

“across diverse settings, including under-resourced countries and health care systems, PS [peer support] is effective in improving complex health behaviors in disease prevention and management including in diabetes.” 1

If you visit your diabetes healthcare provider (HCP) once per month for 20 mins, that’s only 240 minutes per year. Yah, it’s all you. Give yourself a high five – this is hard work! Regardless of the type of program, a peer community can help you in so many different ways. Emotional support, stress relief, guidance, learn to advocate for yourself, exposure to various management tools, techniques, devices, and medications, and the list goes on! Being around like-minded people going through the same thing – just.makes.sense.

Myth #2: I don’t need it – my diabetes is well managed. 

That’s awesome and we’re excited to hear that! Over the years, I’ve often heard the comment, “I didn’t know I needed it until I was there.” A peer program, whether that be an event or group, can fill a gap you didn’t know existed.

We can learn things from our peers that we just can’t from our team of doctors and nurses. For example, you might not be aware of specific tips and tricks that people with diabetes use concerning their devices, medications, insurance plans, or assistance programs. Peer groups can also help us fine-tune our diabetes management in different ways than our healthcare teams can. They are there when the going gets tough, and you need someone who “gets it.”

A good friend of mine, doing well and happily managing his diabetes, had no desire to use CGM (continuous glucose monitoring) technology. He attended an event and saw his friends using one and realized he could fine-tune things even more. It was because he saw others using it and was able to speak to them about their experiences; he decided to give one a try. Six years later, he’s still using one and doing better than ever.

Myth #3: I only need a peer community or mentor when first diagnosed.

Having someone walk you through what to expect or be there with you as learn can be impactful. But diabetes is lifelong, and that means it can change over time. Life ebbs and flows, and so can our management and ability to focus on it. Having people who “get it” and you can turn to can be beneficial at any stage!

Myth #4: A peer program is all about complaining. I don’t want to be part of a pity fest. 

We hope not! I know in my peer group I can post funny anecdotes (those things that only people living with diabetes would get a laugh out of), ask questions, figure out what to make for dinner, but yes, also vent if I need to.

The way I’ve managed my diabetes has changed over time throughout my life, and my peer group has been so helpful and empowering along the way. We hope our peer mentorship program will be a source of positive relationships and interactions.

Myth #5: My diabetes will be reversed if I join a mentorship program.

We wish this were always true. According to a small study 3, people diagnosed less than four years ago with type 2 diabetes found that drastic calorie reduction normalized blood glucose and insulin resistance. Thus, stopping diabetes in its tracks. However, this study did not include anyone using medication and had strict exclusion criteria. Therefore this result may not be true for everyone. Alongside lifestyle changes (nutrition, exercise, sleep, and stress reduction), sometimes medication is needed to help the body work more effectively and efficiently. Joining a program or group can help you find the resources and support you need to make those necessary changes and stay the course.

Myth #6: I will be shamed or judged for my choices or medications I’m using or not using.

We’re sorry to hear if that’s the experience you’ve had previously! For many communities and programs (including Facebook groups), most have guidelines each person must adhere to in order to participate. In our forum, there are Community Guidelines (rules for posting). Our Peer Mentorship Program encourages empowering language and not “shoulding” each other (“You should or shouldn’t do this.”) Instead, we speak from our own experiences, what has and has not worked. Each person is on their journey, and it takes time to reach your goals. What works for one person doesn’t necessarily mean it will work for you (diabetes would be SO much easier if we could all do the exact same thing and get the same results!) Most times, you’ll need to experiment to find the combination of things that work for you, whatever those things may be. One step forward at a time.

Myth #7: It’s too much time. I don’t want to spend more time talking about diabetes.

via GIPHY

We totally get it! Joining any program involves a time commitment, but what you put in, you get out. We know that talking about our experiences creates a sense of connection and belonging, which can help us cope during difficult times. It can also be more efficient to talk about options and choices with real-life users before starting something new or making changes. Sharing what is going on, asking questions, learning from other’s challenges, and helping others can pay you back in dividends.

Myth #8: These types of programs don’t work.

We hope they do, and research shows they do work! Peer programs are an option or piece of a larger puzzle. It’s one area that can help you manage your diabetes, but you have to show up and participate. Specifically, in the Diabetes Daily peer mentorship program, we ask that you set some goals to work towards them and use the community for help. You create the goals, and they can be as small or grand as you like.

See what our previous program participants had to say:

“I really enjoyed my time chatting with others and seeing how others managed their diabetes. It [the program] gave different perspectives but I always felt very supported. I felt I also helped my mentor with their diabetes.” 

 

“I learned so much from my mentor! He had tons of knowledge and I changed a lot of my lifestyle based on information from my mentor and the group.” 

 

“I learned about diabetes technology that I would have not known about.” 

 

“I was very introverted and not ready to accept my diabetes. This program made me realize how important it is and that I can’t ignore it.” 

Myth #9: All of these programs are the same.

Every program is different and unique. Take Weight Watchers; for example, it previously focused on in-person group weigh-ins and meetings. Now, the program uses an app and online support to help members reach their weight loss goals. Alcoholics Anonymous (AA) is composed of in-person group meetings and a one-on-one sponsor relationship. Cancer support groups often meet in person with a social worker, mental health professional, or facilitator to discuss their experiences, feelings, and emotions. Diabetes Daily has an anonymous online forum where you can freely post your questions and answer other people’s. The re-launch of our mentorship program is more similar to AA, where you have a partner to connect one-on-one with and group sessions where you can learn from others’ experiences and stories.

Myth #10: It’s a diabetes education program.

Yes and no. It’s what we call peer support and peer education. By listening to others’ successes and their challenges, you learn about real-life experiences. For example, it’s invaluable to hear about a medication’s common side effects and address these with your doctor before trying something new. Not everyone will react the same, but we know sharing your tips and tricks can help others. Continuing to work with your healthcare team is vital as they are the ones who will address medications and any changes to those.

To learn more or join our peer mentorship for people living with type 2 diabetes, head to our Mentorship page. Registration closes August 28th, 2020, and the program begins September 1st. We hope you’ll join us!

References

1. Fisher, EB, Boothroyd, RI, Elstad, EA; “Peer support of complex health behaviors in prevention and disease management with special reference to diabetes: systematic reviews” (2017) Clinical Diabetes and Endocrinology DOI: 10.1186/s40842-017-0042-3  Accessed: 8/21/2020 https://clindiabetesendo.biomedcentral.com/articles/10.1186/s40842-017-0042-3  

2. Warshaw H and Edelman D; “Building Bridges Through Collaboration and Consensus: Expanding Awareness and Use of Peer Support and Peer Support Communities Among People With Diabetes, Caregivers, and Health Care Providers” (2018) Journal of Diabetes Science and Technology DOI: 10.1177/1932296818807689 Accessed: 8/21/2020 https://journals.sagepub.com/doi/full/10.1177/1932296818807689#

3. Lim, E.L., Hollingsworth, K.G., Aribisala, B.S. et al. “Reversal of type 2 diabetes: normalisation of beta cell function in association with decreased pancreas and liver triacylglycerol” (2011) Diabetologia 54 DOI: 10.1007/s00125-011-2204-7 Accessed: 8/21/2020  https://link.springer.com/article/10.1007/s00125-011-2204-7#citeas

Source: diabetesdaily.com

Embracing Community in Times of Crisis

This content originally appeared on Beyond Type 1. Republished with permission.

By Erin McShay

Sometimes in life, it takes something bad to happen for us to pause and appreciate how good things once were. I used to think of our lives as before and after our Sam was diagnosed with type 1 diabetes. Fast forward twelve years: he’s a senior in high school and the Corona virus is sweeping the country. The cacophony of chaos in the world is now pulling our attention into dark territory, channeling voices of fear and uncertainty. It’s almost as if time has slowed down to a crawling pace; giving us the chance to inhale and catch our second wind.

Community

Image source: Beyond Type 1

Always a Battle

Dealing with any chronic illness is an arduous job packed with hundreds of additional decisions to make a day. Ordering supplies, planning and packing become essential, life-saving chores. We take the burden in stride, but then become our harshest critic when thing go wrong. From personal experiences, I’ve learned that dwelling on our missteps serves no one. Remember that Billy Joel song? “We’re only human, we’re supposed to make mistakes.”

Just last year I made a doozy when we sent our two teenagers to Houston to visit family – I forgot to pack additional insulin pump cartridges for our son. Halfway into the trip, Sam called to say he ran out of cartridges. We’ve taken dozens of trips throughout the years, driven and flown across the country, camped in remote areas, and I’ve never forgotten anything. I told him to check again. We went over the list together; extra insulin, needles, blood sugar meter, back up meters, test strips, infusion sets, ketone strips but no cartridges. In a cupboard, I found the sandwich baggie of them that somehow got left behind. Anyone who’s ordered these types of supplies knows that you can’t just walk into a pharmacy to get more; in fact, you only have a few options and they all take twenty-four hours to ship. It didn’t matter how many times my son and husband told me it was okay: two thousand miles away, I spent the entire night consumed with guilt and worry, crying on my husband’s shoulder. Sam spent the night waking up every two hours to do blood sugar checks and give himself shots. He learned a hard lesson and so did I, but meanwhile we still had to find cartridges.

Community

Image source: Beyond Type 1

Somehow, on a hunch and a prayer I managed to look up a Facebook/Beyond Type 1 friend whom I’ve never met – and asked for help. It was a miracle really. I was a complete stranger to her, she could have said, ‘Sorry,’ but instead this angel went to extraordinary measures for us by reaching out to her community to find me the specific cartridges I needed for Sam’s pump. Her son had a different pump, but a friend of her’s (another angel) met Sam and my sister-in-law to give them an exceeding amount, beyond what he needed. I paid her back when I got her address, but at the time I don’t think they knew the depth of my gratitude. Not to mention the many thanks to my sister-in-law for driving Sam to another county, and our family in Houston for taking such good care of him.

When You Need Help, Ask

The chances are in your favor in the type 1 community with a million out-stretched hands, and general well-wishers ready and willing to offer not only advice, but whatever you need to help you get by.

I’m embarrassed to say I ran out of supplies once before the Houston trip. Not long after Sam was diagnosed, we depleted our infusion sets before our new order arrived. Luckily a neighbor, whom I met through a friend, had the same insulin pump as Sam, and gave us a few loaners. Another neighbor, a type 1 diabetes (T1D) dad who lived around the corner from us, went out of his way to offer advice and help us when Sam was first diagnosed. We were so scared in those early years and his helpful words still bring me comfort years later.

Get to Know Your Neighbors

Once, I bonded with a fellow writer at a conference, where I divulged that I had a son with type 1 diabetes. We became fast friends after she told me she had developed late adult onset T1D. One night, when my son’s pump stopped working, I called her in tears. My husband was out of town and I couldn’t get Sam’s pump to prime. She drove over to my house at ten at night – because these problems never happen in the middle of the day – and got the pump working again.

I wouldn’t have known these angels to receive help from them, had I not been as forthcoming about Sam’s disease. Nor would I have met them if I wasn’t on Facebook or involved with my community. You don’t realize these tiny miracles for what they are, until after the fact. If not for their help, I would probably be in a strait-jacket staring at a cement wall somewhere. Instead, I am now willing and able to pay it forward anyway I can.

Sibling

Image source: Beyond Type 1

As a writer and avid reader, I peruse tons of articles and social media sites a day, and if there is one thing I’ve learned, it’s to think before you say or post something. Negativity helps no one. I’ve found that depressing, bleak posts can linger in your psyche long after you’ve read them. Your views can really impact others. On the other hand, knowing how meaningful certain tweets can be, spreading love and encouragement, cannot only change a person’s day but has the power to alter their lives.

One kind word can mean the world to someone. Life is hard, especially with a chronic illness and there is no question diabetes stinks, but what a wonderful support system we have in place within the T1D community! People can be quite beautiful, and they have a wealth of knowledge on a much deeper level sometimes than our medical professionals.

Pay It Forward

I heard once that Jackie Kennedy Onassis said that motherhood was the most important job on earth and if you mess that up, whatever else you do doesn’t matter very much. My son and daughter are edging their way to adulthood now, and I hope that they’ve learned from my mistakes and watched how I forgive myself. I hope they’ve learned from the tiny mercies shown to us, and that when someone’s in need, you offer a helping hand or an encouraging word without blinking. I hope they stand up to injustice when they see it, and become advocates for the less fortunate, like those struggling to afford insulin.

As I reflect in this trying time, I see that through Sam’s diagnosis, we’ve learned and grown so much because of it. It’s made us who we are – all of us. And though this is a flawed, imperfect world, we truly have a family beyond our own. No amount of social distancing can diminish how interconnected we truly are. The silver lining through this all is that we have each other.

Source: diabetesdaily.com

Search

+