DBlog Week Day 4: Healthcare & Insurance

Oh goodie, another subject I have lots to say about! My experiences with the healthcare system and insurance companies definitely fall along a spectrum, from truly horrifying to truly outstanding. I’m lucky enough to have a fantastic endocrinologist who I’ve been seeing for over 10 years (and he treats adults, so I don’t have to worry about switching any time soon)- I know having a doctor you like is a rare thing in the diabetes community! I have never been scared of, or dreaded, any appointment I’ve ever had with him, although anticipating my A1C results is a different story. But no matter what my readings have been, he never makes me feel bad- we just look for ways to improve (which are often helpful). Other care providers- my PCP, eye doctor, and a new CDE who helped me get back on the pump after a yearlong return to MDI- have been similarly positive.

I’ve had some negative experiences with other healthcare providers, including a CDE who entered my settings incorrectly during a pump training (which threw me off for several hours until I noticed and corrected the mistakes) and a provider who INSISTED that I could ONLY have three basal rates (morning, afternoon, and night. Needless to say, the changes resulted in- well, a fiasco, and I quickly switched them back.). My experiences with my current health insurance have been surprisingly good- the people I’ve spoken to have been polite and helpful, I’ve never had much trouble getting supplies covered, and if there is ever a problem, they are quick to resolve it.

Like yesterday- my mail-order pharmacy had called to say a “prior authorization” was required for my test strips. No one there could explain to us why it was suddenly being required, or what a prior authorization even was. Frustrated, I contacted my insurance company, and I spoke to a woman who calmly and thoroughly explained the whole situation- she wouldn’t let me get off the phone until I was sure I had no more questions! I was pleasantly surprised and impressed.

While I’m lucky to have had a relatively smooth experience (with the exception of my pharmacy- see day 2 for my rant about them), I know others have had to struggle- finding a good endo, working with insurance- and all of this makes managing diabetes harder. Many of the people I know with diabetes are planning to go into health professions-so that they can help others with diabetes. This is a trend that I hope will continue; I think people of all ages could benefit significantly from working with endos, CDEs and nurses with diabetes. I myself hope to be a diabetic nurse practitioner one day. Diabetic biomedical engineers could change the face of the d-tech industry; nutritionists with diabetes could also have a lot to offer.

I’ve always said that studying diabetes in a book or a lab is completely different from LIVNG with it every day; providers with diabetes understand what might or might not be a feasible solution to a patient’s problem, even if it’s something non-traditional. Maybe that provider would have trusted me when I said three basal rates wouldn’t work for me if she understood this…

DBlog Week Day 3: Words, Words, Words

If there’s one thing that’s a sure bet with diabetes, it’s that some people feel the need to comment on your lifestyle choices after you reveal your diagnosis. While it doesn’t happen to everyone every time, it happens often enough for us to make memes about it- so yeah, pretty often!

When people talk about these experiences, they highlight them as offensive, insensitive- implying that they caused their disease when they should have known better, and making comments like “I could never give myself shots every day!”

I find it hard to blame people for some of these comments; after all, very little has been done to dispel old myths about type 1, and the diagnosis and treatment of type 2 have become more prominent in the media. Type 1 is covered much less often, so it makes sense that people equate “I have diabetes” with what they know about diabetes from the news.

But first and foremost, even before it’s offensive, commenting on someone’s lifestyle choices IS RUDE. I’m not offended when someone is surprised that I’m “so thin for a diabetic” or assumes that I can’t eat anything with sugar, but I am frustrated that people think that it’s okay to comment on other people’s choices, and make assumptions without knowing the circumstances. Making comments about the lifestyle choices of people without health complications is not considered acceptable; why does a diabetes diagnosis reverse this attitude?

In regards to how we speak about ourselves and our diabetes management- everyone has their own “dialect” of diabetes lingo. “Check” vs. “test,” “dose” vs. “bolus”- each person learned these terms a different way, and has their own preferences. The use of “diabetic” versus “person with diabetes” has gotten a lot of attention, and most people strongly prefer one or the other. While I wouldn’t use “person with diabetes” to describe myself- I feel like it’s a mouthful- I do see the benefit of using a term that separates the person from the diabetes. For me, that’s “I have diabetes” or “he/she has diabetes.” I have no problem referring to myself as “diabetic” but for some reason I’m less comfortable when other people refer to me that way. I’m not really sure why- still figuring that out.

In short- think before you speak, and no matter how we talk about our insulin/blood sugar testing, we’re all still talking about diabetes!

(Although- does everyone say “I’m high/low”? That one seems pretty universal to me!)

DBlog Week Day 2: Mental Health

My first reaction to today’s prompt (like a lot of other people’s, I’m sure) was “OH BOY, DO I HAVE A LOT TO SAY ABOUT THIS!”

Doing the job of your pancreas is not easy, and it requires a lot of thought, planning, and record keeping. Obviously that’s going to have an impact on your mental health. From the time I wake up in the morning, I’m already thinking “Where will my blood sugar be two hours after breakfast? Do I have enough food packed to treat lows today? Do I have enough insulin to last until I get home? Should I change my site? Do I need any prescription refills? (horror of horrors. I’ll get to that later.)”

This is just a short list of the thoughts that run through my head every day. It doesn’t often occur to me how much energy I spend thinking about and managing my diabetes, but when it does, it hits me like a ton of bricks. I sometimes wonder how much simpler my life would be without it.  The best examples of this are definitely eating out and changing my site. I’ve had a lot of problems with site failure in the past, and I worry a lot every time I change it. I won’t change it before bed, before work, or before leaving the house for the day, so that if I do have a site failure, I can manage it better. But my worries result in me not changing my site as often as I probably should…

Eating out is an extremely stressful experience for me- I never know how well I’ve counted carbs (so I usually just get salad, regardless of what I’d actually like to be eating) and, unavoidably, my blood sugars go high and stay high for about 10 hours. If the meal I eat out is dinner, this means my Dexcom will wake me up every 2 hours while I sleep so I can give more insulin. This results in a grumpy, dehydrated, and sleep-deprived Kristen the next morning. As a result, I avoid eating out if I have somewhere to be the next morning- or if I just want to sleep through the night.

But the most detrimental thing to my mental health? Refilling prescriptions. My insurance mandates that I use a mail order pharmacy-which shall remain nameless because I have nothing good to say about them. They don’t communicate- if there’s a problem with your prescription/order/payment, they won’t let you know. I’ve spent weeks waiting for prescriptions that never arrive, only to call and find out that the order was never processed. I’ve also dealt with charges for nonexistent orders, been shipped the wrong supplies, and interacted with rude and incompetent customer service reps. I have been reduced to tears on a number of occasions after calling this pharmacy, and frequently state that dealing with them is THE worst part of having diabetes.

There are some bright spots though, like Tandem’s AMAZING customer service department, not being afraid of/dreading endo visits, and good blood sugar days. Those days- when you know your hard work has paid off- are huge self-confidence boosters.

So yeah, diabetes is a huge downer a lot of the time, but the good moments have the power to turn your whole day around.

(Yes, that’s kind of cliche- but it’s true!)

DBlog Week Day 1:Why I’m Here

I am so excited to be participating in DBlog Week 2016! This is my first time writing for DBlog Week, and also my first post as a new college graduate (hooray!). Today’s topic asked us to reflect on why we blog, and what message we are trying to send.

I started blogging almost a year ago, after attending a student leaders’ retreat with the College Diabetes Network. I had never gotten to interact with so many people my age with diabetes before- I didn’t know anyone growing up, and my university’s chapter of CDN was very small. Being around 30 other people who were all checking their blood sugars and giving insulin at the same time I was had a much greater effect on me than I expected: I had never felt out-of-place doing these things before, but being surrounded by others doing the same things I was gave me a profound sense of “belonging” to the group, and to the diabetes community as a whole.

After I went home, I knew I wanted to get more involved in the diabetes community; several people I met at the retreat wrote their own blogs, and I decided it was something I’d like to try. Originally, my focus was to reach as many people as I could with my writing, to contribute to the DOC, but writing for my blog has slowly shifted to become something therapeutic for me, especially since I decided to expand my focus to my experiences dealing with social anxiety and relationships in college.

Making the decision to blog, in itself, demonstrated how much my self confidence has grown over the past few years. I often joke that I was “scared of my own shadow” during freshman year of college, but it’s not far from the truth. Expressing my thoughts and feelings on such a public platform is something I never would have considered even a few months before I started this blog- but here I am, putting my writing on the internet!

I want people who read my blog to know that diabetes (or any life circumstance) shouldn’t stop you from doing something you want to do, while also conveying that everyone manages and reacts to their diabetes/other challenges differently. No one experiences EVERYTHING about it in the same way, but we all share enough to feel connected to each other.