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Posts from the ‘Guest Diabetes Blogger’ Category

Guest Post: Peer Support, and Mending a Broken Heart.

Anna Floreen was diagnosed with type 1 diabetes at the age of six, and she lives in the Boston area with her husband and their adorable puppy dog.  She’s currently working as the Community Outreach Manager for Glu and travels the country speaking at diabetes-related events.  A champion for diabetes camps and peer-to-peer support, Anna works tireless to build up the diabetes community.  Today, she’s sharing part of a very difficult experience that she went through a few weeks ago, involving the end of a pregnancy dream, the power of peer support, and the slow, steady process of rebuilding.

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Friends are great. Girlfriends are that, “What do you need / what are you craving” after a shitty break up who show up with ice cream and your favorite chick flick. But diabetes friends are speechless – not because they don’t say anything, but because they get it. I realize now more than ever, that those friends who have the “unspoken understanding” of diabetes matter the most to me, at least, right now anyway.

My husband and I lost a very much wanted baby girl five weeks ago – exactly at the half way point of my pregnancy. The loss was nothing diabetes-related whatsoever. It was an insanely rare congenital heart defect in which we did nothing to cause. (Trust me, the guilt of diabetes was most certainly number 1 on my brain cells for quite some time).  It wasn’t however, my parents or best friend that I turned to first to share my horrible, no good, very-bad day news with; it was a peer with type 1. She knew I was pregnant before my mom (Sorry mom – I was in Vancouver), and she helped guide me through every “exit explosion” of morning sickness, the crazy low blood sugars, and all the doctor’s appointments.

She was in the next room when we were given our baby’s devastating diagnosis (she’s not a stalker; we share the same OB/GYN and endocrinologist).  It seemed weird not to tell her. She waited in the parking lot after her appointment to make sure I wasn’t alone, checked in with me daily the week following my surgery. I told her, and other type 1’s about this experience first because they get it. They get what it takes to bear a pregnancy with type 1: the endless overnight beeping, juice box wrappers, and constant communication with care-team members, so of course it makes sense. We crave that feeling of belonging, we’re kindredly connected, and I kind of like that.

Weeks later, as I attempt to grasp my new reality, I’m feeling incredibly thankful to have these peers. Although I am no longer pregnant, Kerri is. And I will be that same rock and shoulder and peer to her if she needs it that she has been to me for the last whatever-the-eff months that was a pretty big blob of blur to me. I’ve learned that it takes a lot of work and homework to prepare and endure a pregnancy, but it’s a heck of a lot better when you have super awesome people to follow along with you.

Never underestimate the power of our peers … especially those with reduced pancreatic function. Sometimes we forget how grateful we are for these friendships, so go text a friend, send them a card, or take a moment to think about the positive power of a peer.

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Jumping in to confirm that Anna has been a tremendous support resource for me and my family as we’ve navigated infertility and pregnancy, and the ties that bind here are permanent.  I look forward to the day that our kids hang out together at the beach and compare notes.

Thanks for trusting us with this, Anna.  xo

Guest Post: Diabetes at Work.

When I asked folks in the DOC if they’d be willing to lend their voices and perspectives for a guest blog post, I was excited to hear from Susannah (aka @bessiebelle on Instagram and Twitter).  Susannah grew up in South Australia and is now working as a lawyer in Cambridge, in the UK.  She was diagnosed with type 1 diabetes during the course of her last year of high school (2000) and is currently using a Dexcom with her Animas Vibe insulin pump.  

Today, she’s taking over SUM to talk about diabetes in the work place, and how to handle the moments when discretion is preferred but diabetes still needs attention, and she’s looking from tips from our community on handling diabetes in the workplace.

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A significant aspect of my life with diabetes which I often feel is ignored is how it fits into my career. Diabetes goes with me to work everyday and has seen the highs (completing deals) and lows (being at work at 2am) of work and as well as sugar!

When I started to write this post about working life with diabetes I was armed with a list of anecdotes but I didn’t expect life to serve up another example of when the two worlds collide. One of the frustrating things that any diabetic knows is it can always throw you something unexpected.

After a seemingly average Sunday afternoon gym session Monday morning last week saw me battling a hypo that just wouldn’t respond (to glucose tabs, reduced basal plus bread with strawberry jam for good measure). With heart still racing and a foggy brain at 9am I emailed my boss to let him know I was somewhat delayed but I’d be in soon. Moments like this make me glad that I’ve been open with my boss about being a type 1 diabetic but also make me anxious that I will be judged as less capable because of it.

Am I the only one who feels like that?

The emotional side of diabetes creeps in too easily. After an experience like that morning I’m left worried that I’ll be judged because of it. Being late on Monday morning is the least of it… We all know there are the doctors’ appointments (6 monthly checks, annual reviews, eye checks, and other specialists – always longer than expected and involving long times in waiting rooms), hypos setting you back (sometimes only a few minutes, other times for much longer), pump sites pulled out causing hassle and even spurting fingers resulting in blood stained shirts! Some of these take up more time than others but they all intrude on what might otherwise be a normal day in the office. Something that I’m acutely reminded of when I’m filling in my 7 hours of 6 minute units of time each day.

I fear hypos at work more than anywhere else. I don’t want to explain why I’m sweating at my desk like I’ve been for a run or to be faced by a deadline but struggling to gather my thoughts clearly. I don’t feel any more comfortable in this situation now than I did when I first started work as a law clerk 10 years ago. Luckily, for many years I had the luxury of my own office and the ability to shut the door gave a level of privacy when required. Recently, I moved to an open plan firm and I am having to reconsider many things I took for granted with a (glass) door… pump site changes at my desk are a thing of the past (cue a few panicked mornings hastily inserting a new site and refilling so that I won’t have to later). I’ve been lucky not to ever have a hypo in a meeting, but this is not without taking care. Meetings with clients or all parties to negotiate a document are a balancing act of starting the meeting high enough not to crash but not so high that I feel sluggish. (and that’s not considering the blood sugar spikes from stress).

Thankfully there are the comical moments – taking a draft document to my boss and having to explain the red smudges on the print out (after 15 years it’s fairly easy to squeeze blood from my favourite fingers… I tested as I typed this and got blood on cue!); being in a meeting with the same boss and having my pump alarm go off – after a quizzical expression from a colleague my boss calmly commented “Don’t worry, Susannah’s bra is ringing!” Needless to say my pump alarms are strictly on vibrate these days.

There are moments that call for advocacy whether I feel like it or not. In a previous job I was surprised when HR requested that I remove my spare insulin from the work fridge or alternatively hide it in a container so other people didn’t have to worry about ‘contamination’. Why?! To this day I haven’t quite figured out who raised the concern (or why?!) but I defiantly ignored that request (with colleagues’ support) and also politely explained to HR that it was not a risk to anyone’s sandwich.

I’m always interested to hear how others handle disclosure with their employers (as well as see photos of their diabetes supplies stashed in their desk), and am always surprised by people who manage not to disclose it. I’m yet to perfect my ‘I’m busy having a hypo so please don’t ask me a question face’ so disclosure is what feels best for me. It may not be for someone else (YDMV). In contemplating my days in the office I realise I have it pretty easy if the worst is getting blood on a contract! I’m in awe of the many people who manage their diabetes while being responsible for others (whether a mother, teacher, nurse or doctor, just to list a few).

How do you handle your diabetes at work? Any tips on how to stress less?

Guest Post: Taking Steps Towards Better.

Emotional health can influence someone’s physical health, and after decades with type 1 diabetes, I know that my health is best when I’m being cared for as a person, with mental health categorized as high a priority as my A1C or standard deviation of blood sugar.  How you feel about the disease you live with every day matters.

Today, my favorite texting friend (known formally in our house as The Briley) is taking over SUM to talk about the steps she is taking to overcome diabetes burnout and find  some peace in the daily demands of her disease.  You can read more from Briley on her blog InDpendence, or on Twitter as @4thandlife.  

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When I saw my new endocrinologist, Dr. A., she was better than I ever could’ve imagined. She helped me with my problems, and handed me a box of tissues as tears rolled down my face. At the end of our first appointment she asked if I wanted to talk to someone about my burnout. There were so many thoughts flying through my mind convincing me that I didn’t need to meet a mental health professional.But then the memory of being pulled out of a bathtub by my mother after I collapsed from a low BG rushed through my mind and my mental health advocate friend popped into my brain.

I said yes.

I didn’t know if it was for me. I didn’t want to go. But I didn’t want to be scared of my body anymore. I didn’t feel as comfortable with her as I did Dr. A. But it was okay.

There were questions that I was okay with her asking: “How low were you when you passed out?” And questions I tried not to answer: “Are you okay being single?” When she asked if I had a CGM, I had to explain how friends have all given me spare parts, but that I’m interested in getting the G4 with my new insurance. She proclaimed how excited she is for my friends and family to be up to date with my BGs. I didn’t have the heart to tell her I just want to see it on my phone.

It’s funny, when I leave my endo (past & present), I feel better because I feel like I have been hugged and comforted. I never felt comforted when I left her office. But I did feel better. Self-induced fear is a powerfully negative motivator. She believes that the fear of lows is where I sit compared to complete burnout. I have a hard time differentiating the two since whichever the reason is, I eat sugar earlier and bolus later. I was uncomfortable when she suggested raising my target BG (not being my endocrinologist or nurse), but when I saw Dr. A. again, she was very excited to have learned about my session and the why’s behind the change in my care.

I will be going back. But I haven’t yet. Even though I should. See, my co-pays are high enough that being at the office 5x in one month was way too much. She still scheduled me too early than what I can afford, so I cancelled that appointment. (Yes, I told her my very valid reasons for not going as frequently as she prescribes.) When I left her office, I was very unsure about going back since she ignored my information about being able to afford her. However, I feel better after hearing Dr. A. praise her work with me.

Am I out of burnout?

No way.

Am I making healthier choices and focusing on my diabetes in a healthier way?

You bet.

Guest Post: Making Connections.

Stephen Shaul is one of the most insightful – and kindest – people I’ve come across in the last few years, and I really respect his thoughts on all-things diabetes.  (Links to his blog and podcast are in the bio below.)  Today, while I’m en route to 10,000 doctor’s appointments, Stephen is taking over SUM to talk about the simplicity, and the power, of making connections.

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“Excuse me, is that a phone there on your belt?”

“No, it’s my insulin pump.”

With just one question and a simple, short answer in a doctor’s office waiting room, a conversation was started between me and a new member of the diabetes community. I put down the publication I was browsing and took a seat next to him.

The man was newly diagnosed, type 2, and had not yet even heard of an insulin pump. He had been diagnosed about ten days earlier by his primary care doctor. Initially, he resisted the idea of going to the hospital. In that moment, he wasn’t sure how to proceed. Everything was so new and so much, he told me. He was there for a follow up appointment. He looked scared. Really scared.

In the few moments we shared together, he confessed to not knowing much about diabetes, but he “must be bad”, because his blood glucose number at diagnosis was unusually high. I assured him that if his number at diagnosis wasn’t unusually high, he wouldn’t have diabetes, and while diabetes is bad, he as a person is not.

I told him a couple of things that I tell many people with diabetes: that the hardest thing about living with it is the fact that it’s always with you and you can’t walk away from it; and that BG checks and A1c results are just benchmarks… something to base treatment on, but not something to assign self-worth to. I finished up by telling him that there are many resources online to go to for information and support, and that he is not alone in living with a condition that affects 29 million people in the USA and 415 million worldwide.

You know what? Five years ago, I couldn’t have had that conversation. Five years ago, I didn’t know much about diabetes, I didn’t know much about the online community, and I certainly didn’t know how to talk about it. What’s changed since then?

Well … I found people online telling their stories and engaging with others whenever they had the chance. They made me want to do the same thing. They made me want to help someone newly diagnosed not feel so alone. I actually learned what to say and how to say it from others who have been in similar situations before. I learned the importance of making connections and opening up a brave, new world to someone who didn’t even know that world existed before they met me.

I also remember my diagnosis, how initially I thought I had everything together, and then walked helplessly through life as one awful A1c piled up after another. Let’s face it: if you’ve never been exposed to diabetes, it’s easy to be overwhelmed by the flood of new information (and misinformation) that comes with a new diagnosis. How I wish I had someone then to help me cut through the confusion.

As I was called back to see the doctor, we shook hands, I wished him all the best, and I asked him to call me if he had any additional questions. At the end of our conversation, he seemed more at ease. At least I hope he was. I don’t know.

Diabetes has a way of making us feel isolated, especially in the beginning, when we need reassurance the most. Making connections that support, empower, and foster communications between those living with and affected by diabetes can often be as critical to our health as the insulin and other drugs we take. It only took a minute to welcome a new member to the community. Here’s hoping my new friend finds survival along with comfort, and happiness instead of fear. And though I really hope we could have no more new diagnoses, here’s hoping he can find a way to help if he crosses paths with a new diagnosis in the future.


Stephen has been living with Type 1 diabetes since 1991. Since April 2012, he has been writer of the diabetes blog Happy Medium, and since then, has covered a number of diabetes-related subjects, including participation in clinical trials, living a week gluten free as if he were newly diagnosed with celiac disease, and the complex relationship between patients, corporate interests, and government entities.

Since July 2015, he has been host of the Diabetes By The Numbers podcast, where he interviews newsmakers in the diabetes community. He advocates for people with diabetes everywhere through support of legislation designed to reduce the burden and ensure safety of people living with diabetes, and through encouraging others with the phrase “I support you… no conditions.”

 

Guest Post: The Cost of Staying Alive.

Charity Shuster-Gormley is a native Vermonter who currently works as a mental health worker in a psychiatric hospital. She was first diagnosed with type 1 diabetes in the summer of 2000 at 15 years old. Charity holds a Bachelors degree in Psychology and a Masters degree in Marriage and Family Therapy. She lives with her husband, their 6-year-old Dachshund Amos, and 10-year-old cat named Bella, and today she’s taking over SUM to share her thoughts on what it costs to stay alive.

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Since the age of 4 I have lived with chronic health conditions. It started with an ear infection at the age of four, which developed into a chronic heart condition called a complete heart block resulting in the need for a pacemaker at the age of 25. At the age of 15, I had corrective surgery for my spine, which had developed serious scoliosis. Five weeks after this surgery, I was in the hospital again being diagnosed with type 1 diabetes.

It was not until about the age of 24 that I started to experience the cost of staying alive, first-hand. Up until then I had been able to stay on my mother’s cushy state health care coverage provided to her as an employee of the state of Vermont and to me up until the age of 24. I knew that my insulin was priced at between 50-100 dollars a vial when I was first diagnosed but until I had to figure out insurance on my own, I had this sense of safety and worry-free mindset and did not think about costs, or how I was going to get supplies.

My first experience a type 1 diabetic with my own insurance was being on Medicaid due to being in college still and the state deeming the insurance my college provided inadequate. There was this great program that was attached to it that I was able to sign up for that provided full coverage for all appointments and supplies that were diabetic related. Then there was the day I received a bill for my testing supplies. I called the insurance inquiring as to why I was being billed for this when it was supposed to be covered at 100%. I was assured by the agent I spoke with that this was indeed an error, and it would be taken care of. I breathed a sigh of relief as the panic of being a full time college student with virtually no income subsided.

Several days later I received a phone call from another agent. They proceeded to inform me that they had spoken with the pharmacy director and that ACTUALLY only insulin and insulin delivery devices were covered under the program I was part of. When I reiterated that this was not was the guidelines of the program stated and asked the reasoning that my testing supplies would not be covered the reply I received was this:  “Testing is not life necessary, ma’am. Only insulin and what is needed to deliver the insulin is.” I was in a state of shock at hearing this. I hung the phone up in stunned silence, still not believing what I had just heard. This was when I first felt the feeling of having to fight for my life.

Today my insulin if I was uninsured is going for $300 a vial. I am working in a psychiatric hospital as a mental health worker and not as a therapist in a mental health agency not only because of my background, but because the insurance I receive here provides me the coverage I need to be able to live. Turning down jobs due to the insurance being so poor or so expensive or both has been a very real reality of mine.

Hearing the CEO of Eli Lilly state that insulin prices are rising due to diabetes being such an expensive disease likely left me looking the closest to Medusa or Broom Hilda that I ever will. My husband turning to me and stating his perception that I am essentially renting my life for approximately $30 a day makes more steam come out of my ears at this thought then Old Faithful produces. Thinking about presidential elections and explaining to others the fact that my life is not just in my hands but in a whole countries who’s biggest concern might not be staying alive … I wake up each day, never giving up hope and faith that the majority of our country desires each and every human to live healthy lives, not having to feel anxious, feel out of control of their health, wonder if they will have what they need to successfully manage their health or have what they need to stay ALIVE. Unification and our voices are a key to the movement towards change I believe.

Our lives are NOT for profit. When you meet a person living with chronic illness ask yourself, “Do I really understand?”

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