Category Archives: Cost

Why Life Isn’t A Failure (Even Though My Mood May Tell You Otherwise)

Posted in Body Image, Cost, Diabetes, Exercise, Food, Mental Health, Personal, Type 1 by

When my colleague knocked on my office door earlier this week, I could barely keep it together. As soon as she saw the tears and trembling lips, she opened her arms, and then asked what was wrong.

“I don’t know, I’ve been crying all morning, and I don’t even know why. It’s not like I’m hormonal right now.” I threw up my arms and started venting or whining as I often like to berate myself.

There were many reasons to cry, I had deduced, but they all pointed to one thing: I felt like an absolute failure – that I had failed my life, and there was no way to remedy it.

Here are the reasons why I thought my life was a complete failure: Continue reading →

The Neverending Ride: Six Years With Type 1 Diabetes

Posted in Cost, Diabetes, Medical Supplies, Mental Health, Personal, Type 1 by

I throw the covers off and stumble out of bed. I wipe the sleep from my eyes and look at my phone for the time. I check my CGM for my blood sugar level. I put on some pants and clip my insulin pump to the waist line.

You told me six years ago that we were going for a ride. I didn’t know then that the ride would never end. And for those six years, I’ve been searching for a way to get back home, but after all that I’ve experienced and all that I’ve seen, can I really go back?

Chocolate and White Cupcake

Today marks my six-year anniversary with Type 1 diabetes. Six years ago at this time I was waiting in the exam room of Xavier University’s health center for results on a severe skin rash. But the results of that skin rash, among other symptoms and an out-of-control blood sugar reading, pointed to Type 1 diabetes. I was admitted to the hospital a few hours later and so began my journey with this autoimmune disease.

My anniversary coincidentally follows #IWishPeopleKnewThatDiabetes Day (April 22, 2015). I felt a sense of solidarity with the diabetes online community as I read through the various hashtag tweets. And I feel like my small contribution to the day evinces how I truly feel about the disease and others’ perception of it.

Continue reading →

‘The Examined Life’ and the Printed Word

Posted in Cost, Diabetes, Mental Health, Personal, Travel, Type 1 by

Today marks the third and final day of The Examined Life Conference: The Writing, Humanities, and Arts of Medicine, hosted at the University of Iowa College of Medicine in Iowa City, Iowa.

Rare medical book textAmong the gorgeous 70-degree weather and the nostalgia of walking along the paved pathways of a college campus, in the last three days, I feel like I have trespassed on history, found a deeper self-identity with my chronic illness, tripped on the psychedelic words of poetry, and discovered a new direction for health care reform.

I admit I wasn’t familiar with the arena of narrative medicine before arriving here. In fact, I wasn’t sure what to expect coming from a creative writing background myself and only having been pushed into the field of health care by my disease. But amidst fellow creative writers and those managing their own chronic conditions were health care professionals writing about it. Some write about their own personal stories — others attempt to peel back the layers of patient stories.

For the first time since working with CancerFree KIDS back in Cincinnati, I felt the power of writing, not just for my own therapeutic means, but for those who may not know how to tell their story, but so desperately want to. And how that story can change the future of a system that currently encourages disparity, neglect, and hopelessness.

Continue reading →

The Future of Diabetes Management

Posted in Cost, Diabetes, Insurance, Medical Supplies, Research, Type 1 by

“I imagine being diagnosed as an adult would be harder because you remember life without it.”

“Yeah.” I nodded at the woman to my left, mother to an 11-year-old with Type 1 diabetes (T1D).

We were both first-timers to the JDRF TypeOneNational 2015 DC Research Summit yesterday. While many parents of children with diabetes attended the day-long event, I was among some of the adults who had been managing this disease for years.

I’m about to celebrate my sixth anniversary with this disease, one year closer to a decade. It’s hard to believe I’ve been managing the disease this long – it’s even harder to believe that I have many years to go. But like speaker Tom Brobson, national director of research investment opportunities at JDRF, reminded us, if we had all been diagnosed one hundred years ago, we wouldn’t have survived a month.

I’d like to believe on the starvation diet I would have lasted a little longer, but he was right about one thing – we’ve come a long way technology-wise. And for that I am thankful. William Tamborlane, chief of pediatric endocrinology at Yale University and deputy director of the Yale Center for Clinical Investigation, familiarized us with the “blue brick,” the first insulin pump device introduced in 1979. It would take another 20 years before the insulin pump would actually take off.

And Jessica Roth, senior director of health policy at JDRF, reminded us of the importance of advocacy. It’s not enough to have all these research advances such as ViaCyte, Smart Insulin, and the artificial pancreas without the ability for people living with this disease to have access to these treatments. It still pains me that Medicare refuses to cover the continuous glucose monitoring (CGM) system for those over 65. Continue reading →

Just Another Emergency Room Visit

Posted in Cost, Diabetes, Insurance, Mental Health, Type 1 by

The only time I’ve ever been admitted to a hospital was when I was diagnosed with Type 1 diabetes back in 2009. In the 22 years before then (besides being born), I’d never had any reason to visit a hospital. I’d never had a broken bone, an allergic reaction, or injuries sustained from sports (except for the one time I caught a softball with my bare hand or when I crashed into a teammate while trying to catch a ball in the outfield – she went to the hospital with a concussion; I iced my jammed thumb on the bench).

But upon reading one of the recent Narrative Matters essay from Health Affairs about a doctor’s perception of the emergency department as a patient, I was reminded of the two times I visited the emergency room due to diabetes and how I hope I will never have to return.

I used to date someone who worked in one of the many emergency departments in Cincinnati. I have a brief understanding of the chaos and stress the staff undergoes on a daily basis. I feel for them and have no complaints about how I was treated the two times I had a seizure as a result of hypoglycemia and was sent to the emergency room via ambulance.

But from a patient’s point of view, it was one of the most lonely and degrading experiences of my life, so much so that after my second seizure when the doctor wanted to admit me for further testing, I disagreed and persuaded him to discharge me. Besides the occasional vertigo, I didn’t sustain any injuries from the seizures, but that doesn’t mean I made the right decision. Continue reading →

Diabetes Coverage: The Never Ending Battle

Posted in Cost, Diabetes, Mental Health, Type 1 by

Just when I think I’ve overcome one hurdle (in this case, the elimination of the pre-existing condition clause with the Affordable Care Act), 10 more appear. I don’t know if I would have experienced the health insurance hang-ups that make me want to bite my nails off and tuck my head underneath my desk at the end of the day, had I not been diagnosed with diabetes at 22.

But in those five years, fighting for diabetes coverage, even something as benign as a 90-day supply for supplies I use every day, has only added to my mental and emotional stress, and in a sense, depleted my overall health and quality of life. I’ve won battles and lost others. But at the end of the day, I still feel beaten.

No matter what I say, no matter how hard I push, no one will see my condition the way I do. They see me as a price tag – an expensive one at that. It doesn’t matter that these supplies or that amount of insulin or that sensor help me live. What matters is that in their predetermined rulebook, it says they do not cover it, and that’s that. Continue reading →

Things I Wish I’d Known

Posted in Cost, Diabetes, Type 1 by

A few months ago I retweeted a quote from Elizabeth Gilbert that went something like “things I wish I knew at 25…”

My five year anniversary with diabetes is coming up in a few days, something I was reminded of this morning during a visit with my new primary care physician.

“You said you were diagnosed at 22?” she asked in a bubbly voice, an endearing tone like that of a child’s rather than a bratty teen.

“Yep, April of 2009.” I said with a smile, swinging my legs against the edge of the exam bed. Why should that make me proud?

And that got me thinking about what I would tell my 22-year-old self now. What words of wisdom could I share with a young woman, driven by education and a career yet hungry for young love and adventure?

Things I wish I’d known:

Continue reading →

Rising Health Care Costs: The T1D Label

Posted in Cost, Diabetes, Insurance, Medical Supplies, Type 1 by

I’m nervous about the future of health care in this country, especially for type 1 diabetics like myself. I was diagnosed almost five years ago at the age of 22. I have no family history, and there was no evidence of an autoimmune attack so the doctors do not know why my pancreas just stopped making insulin. But it did.

Many researchers point to a combination of genetic susceptibility and environmental triggers. With the amount of chemicals plaguing our food and our household products, that’s not so surprising. But then why, among my two brothers and a mother and father, was I the only one that contracted diabetes? When I was diagnosed, my parents were surprised, mostly because out of everyone in our family, I was the only one who made a daily, concerted effort to eat right and exercise. What was it for?

This is a question I no longer ask, and I am thankful I have employer-sponsored health insurance that will cover the cost of my expensive disease. But when it comes to health care, I am one of “those” who potentially costs the system. I fall into the “high-risk pool.” From an evolutionary perspective, I should have been weeded out of the population five years ago. But here I am.

Even though I am no longer considered “young and healthy,” I still consider myself “young and healthy.” I manage my diabetes well with an insulin pump. I maintain an A1C of 5.6 (average blood sugar readings over the last 90 days). My average daily blood sugar readings range from 70 to 160. I still have bad days, and if I had a continuous glucose monitoring (CGM) system, I’m sure it would show a higher range, but when you have to survive on animal insulin injections and carb estimations, how much do people really expect you to get it perfect?

I’m thankful for the insurance I have, which allows me to afford my insulin pump supplies, my test strips and insulin doses. There was a time when I didn’t have coverage, when I had to pay for my “life source” out-of-pocket, and suffered the consequences (financial and physical). I’ve endured a health insurance roller coaster in the past four years. Continue reading →

What Do You See?

Posted in Cost, Diabetes, Type 1, Women's Health by

I squinted at the Word document on my laptop while I drowned out the noise of Xavier University’s campus center. I sat back in my cushioned chair within the study area of the third floor. It was my last finals week as a senior in college.

I increased the document size to 200 percent. There. I could finally make out the words of my American Literature class essay. Had this diabetes diagnosis changed my vision forever? I had somewhat poor eyesight before being diagnosed with Type 1 diabetes a week prior, but I wore contacts on a daily basis. It never interfered with everyday tasks.

Second to my father, I am the only one in my family who needs glasses. Now that my mom is older, she’s turned to reading glasses, but both my younger brothers have perfect vision. I started wearing glasses at 16, just so I could see the white board in class. When I competed in cross-country races, I ran blindly (well not really, I could see in front of me just not at a distance).

In college, I made the switch to contacts. My pupils are so large it is impossible to drive without sunglasses, and the frames I propped over my regular glasses to shield the sun weren’t doing the trick. What a difference contacts made! But then four years later, they didn’t help at all. Continue reading →