Category Archives: Type 1

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.

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‘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.

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Peanut Butter May Still Be the Death of Me

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

I woke up at 2:30 a.m. shaking, while Cosmo, my continuous glucose monitor (CGM) vibrated and beeped at me from the nightstand to my right. I pushed its button, acknowledging the warnings, and saw the screen light up with the number 45.

I didn’t need to check my blood sugar level with my glucometer. My heart was pounding, and the room was blurry. I thought of the orange juice in the fridge but decided to go for the Reese’s egg in the freezer. I knew from recent calculations that this chocolate-covered, peanut-butter filled egg contained 25 grams of carbohydrates (mostly sugar).

That should do it, I thought. Norm, my two-year-old tabby walked into my bedroom and sat on the floor in front of my bed with a quizzical look. The egg didn’t feel like enough even though I knew it was. I checked my insulin pump, which confirmed there was no active insulin in my system. My basal rate was set to decrease from .600 units to .400 at 3 a.m. to account for those middle-of-the-night lows.

I knew I would be okay, but I was still shaking, and my heart was pounding. My body felt weak and depleted, and I craved sugar – the sustenance necessary for instant energy. Earlier that day I had made the mistake of buying a few bags of Reese’s pieces eggs, now 50 percent off in the post-Easter haze. 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 →

Diabetes Knows When I’m Stressed

Posted in Diabetes, Mental Health, Personal, Research, Type 1, Women's Health by

This past week has been one of the most stressful weeks for my physical and mental health probably since I completed grad school a few years ago. It didn’t help that it was preceded by hormonal blues and a delayed website launch. Among other things, my work life overpowered the rest of my life, making my ability to sustain personal goals nearly impossible.

And maybe it’s my own fault for putting too much on my plate personally? But I did this so that I would have a life outside of work and so that I could be happy. But my inability to have that personal life because of work obligations made me extremely unhappy and not the most joyous person to be around.

What was worse is that when I left the office on Friday, that stress left with me. I couldn’t get it out of my head and my dreams, and my roommate could tell you that when I was hounding the vacuum cleaner on Saturday, cussing up a storm because I couldn’t unlock the filter mechanism, my irritability and frustration had reached a devastating point.

I ended up breaking part of the vacuum when I slammed it against the kitchen counter. This didn’t surprise me. This is why I had a stress ball that I used to throw against my dorm room in college when I felt particularly overwhelmed. But not since I had broken up with my ex more than six months ago did I feel this overwhelming feeling of frustration and anxiousness that no amount of cleaning or running could alleviate.  Continue reading →

Basal and Bolus

Posted in Diabetes, Exercise, Personal, Type 1, Women's Health by

Basal and Bolus are my lifeline, but they’ve recently hit puberty, and their hormones and emotions are all over the place. This does not make life easier for me, and no matter what I do, they don’t listen. I guess I should respect their independence, but sometimes I miss the obedient rates that never questioned me.

I try to be the healthiest person I can be, but there are days when the diabetes takes over. It’s not necessarily a result of anything wrong I’ve done in managing it, but whether it’s stress or hormones, sometimes my blood sugar levels have a mind of their own.

In a State of Flux

Blacktip Reef with wavy blue lineYesterday was one of those days. Since I went off birth control six months ago, I’ve struggled to balance my basal and bolus rates (basal is the long-lasting insulin I take continuously throughout the day; bolus is the fast-acting insulin I take before meals). My insulin sensitivity is constantly fluctuating. Continue reading →

Weightless

Posted in Body Image, Diabetes, Exercise, Mental Health, Personal, Type 1, Women's Health by

Sometimes it can be one look in the mirror. Sometimes it can be the tightening feeling of a pencil skirt. Sometimes it can be that bloated feeling right before the monthly cycle. Sometimes it can be the fact that one hasn’t been on a date in six months. Sometimes it can be the wintry mix outside and the mood it brings.

But whatever it is, it’s not good. It leads to a feeling of failure, of powerlessness over the fate of one’s body. All of those negative, self-critical thoughts come flooding back, and no matter how bright the sun peaks through the blackout curtains, the darkness overwhelms the room.

People asked how it is I lost weight in the past year. My response was always “I don’t know.” A five-hour daily commute. A failed relationship. Depression. Disease. I tried to believe it’s because I finally had a good body image. I listened to my diabetes, and I stayed active (this mostly constituted walking a mile to and from the train every day). Continue reading →

An Online Realm of Little Freaks

Posted in Diabetes, Exercise, Personal, Type 1 by

“Hey u little freak.”

[Insert phone number here]

Everyone online boasts about traveling the world so it seems only appropriate I should post a picture in Frederick, MD.

Everyone online boasts about traveling the world so it seems only appropriate I should post a picture from Frederick, MD.

I have entered the world of online dating. Up until last night, I hadn’t (figuratively) met too many weirdos or creepers as so many warned me about, although within the first 24 hours of my profile going live, I received multiple “Hey beautiful” messages. Come on guys, let’s be creative. And girls, don’t ever respond to objective one-liners like that.

It’s a lot more work than I anticipated and a bit overwhelming. Sometimes after skimming profile after profile, it’s hard not to be superficial. I’ve decided I have certain criteria, too. After two failed long-term relationships back-to-back, I’m not willing to put myself in certain situations again. I no longer believe that they will change. Continue reading →

The Silver Lining Effect

Posted in Diabetes, Exercise, Personal, Type 1 by

I’m a moody person, usually greatly affected by hormone levels. But even though I chart this for my own benefit, sometimes when I expect to be down, sad, and irritable, I’m upbeat and hopeful. I call these fortuitous moments because I’m not pulled in by my own confirmation bias. And I’m not intentionally looking for a silver lining, but it’s there like the alarm clock of my cat’s meow at 7am.

This week hasn’t been easy, either. After coming down off the high of traveling for the holidays and consuming way too many sweets, it seems my body is trying to punish me. From a cold to an infection to now a clogged tear gland on my left eye, I wanted to throw up my hands on Monday and go home.

And when I got lost for the tenth time around Dupont Circle (these DC traffic circles are the bane of my directional existence) trying to meet my friend for dinner in 20 degree temperatures, I gave up on this week. But then I got to see my one of my best high school friends who was in town for a series of events for law school. Continue reading →