Halloween is a surreal holiday. It’s my favorite holiday, but it is also a reminder of how much life with an incurable chronic condition affects my perception of positive childhood memories. I’m lucky that I could grow up with trick or treating without Type 1 diabetes, but I am also cursed in that I will never relish in the same devilish appetite now that I have a disease that negates sugar.
So, it seems appropriate on this almost All Hallow’s Eve and in preparation for November — National Diabetes Awareness Month – that I should write about what it’s truly like to live a day in the life of someone with Type 1 diabetes. A few weeks ago, I took an ordinary Monday (well, as ordinary as a Monday can be) and tracked every time I thought about my diabetes – every time I checked my blood sugar, every time I calculated carbohydrates for a meal, every time I felt something was “off,” and every time I administered insulin to keep my body alive.
Even I was amazed at how much managing diabetes has become a part of my everyday life. With advancements in technology, I’m able to do more, and I’m able to have more variety in the foods I eat. But that doesn’t mean I don’t think about it any less. That doesn’t mean I can take a break from being there for my body.
So, here’s one example of one day (because no day is the same) with Type 1 diabetes (there are no days off). It’s a long one, so bear with (just keep in mind that this is really how much I think about diabetes on a daily basis – believe me, it sucks). Continue reading
I’m 30. People said my metabolism would slow down the closer I got to this milestone. But it’s not just being 30. There’s something else I have to contest with – something called Type 1 diabetes.
I don’t have the energy I had when I was 22 or 25 or even 27. Something has changed in the past year. I’m exhausted all the time. I’m lucky when I can work out more than three times a week. Hell, I’m lucky when I can manage to do weights after a 10-hour work day.
Any kind of physical activity is a struggle. I want to be in shape. I don’t want to be overweight when I age, but over the last year, I’ve gained 10 pounds. It doesn’t seem like much, but it’s hard for someone who used to have to body image issues to tell herself it’s okay I’m a little heavier. Continue reading
I love growing older – there is something about the introspection and wisdom that comes with age that very much appeals to my self-aware self.
With a chronic disease like Type 1 diabetes, getting older also means my body may not be able to manage as well after years of undue stress. The fatigue has been quite noticeable in the past year so much so that I once thought there may be something wrong with my thyroid. But my blood work continues to show positive signs (well, minus the incurable chronic condition).
But diabetes is not the only ailment I’ve had to face in the last 10 years. It’s an issue I don’t often talk about because I am somehow ashamed of its existence. It took me years to feel comfortable telling folks I had Type 1 diabetes. But diabetes, at least in today’s day and age, is somewhat understandable. And there’s scientific proof it exists.
So, what about another incurable chronic condition, that while it has a name in the scientific community, is often dismissed by health care providers because there’s no evidence the pain exists? And just like diabetes, researchers do not know where it comes from or why it exists. But it plagues more than 12 million people in the US (mostly women). Continue reading
I was sweating my ass off on the way to my third doctor appointment this month. I decided to take the time from work and travel halfway downtown (plus another 15-minute walk from the metro) to see a specialist about my recent lab results – results my former endocrinologist said showed I had another autoimmune disorder.
I wasn’t so sure. For one, I didn’t have any symptoms. For two, only one result came back abnormal, and the level was barely below the normal range. And for three, I couldn’t handle the idea of having another autoimmune disorder, even if it only meant taking a pill every day for the rest of my life.
But in the past week since I learned of these results and made this follow-up visit, I started questioning myself. Had I gained weight in the past few months? Wasn’t I feeling more tired lately? Hadn’t I been more depressed than usual? Didn’t I feel thirsty all the time? Didn’t it feel like I had a sore throat even though I knew that was impossible? Continue reading
I struggle to pull the hood of my raincoat over my head while trying to sidestep patches of black ice on my walk home from work. I have returned to the wintry mix of Maryland in March from the warmth of 80-degree sun in Tampa, Florida. I am not comforted by the fact that the gray chunk of ice blocking the sidewalk near my apartment’s back entrance is now two inches taller than when I left it last week.
And now the meteorologists are calling for three to five inches of snow tomorrow. I snuggle up to Norm and my electric blanket and hope the office will close before I attempt to make the trek into work. Just a few days ago, I was sitting on my friend’s porch in a t-shirt and shorts with my computer in my lap and a Russian blue kitty meowing at me from atop the closed Jacuzzi.
It was my first true vacation (family visits don’t count) in four years. And since my birthday falls in the worst month of winter and I happen to have a good friend who moved and bought a house in southern Florida, it seemed like the perfect getaway. Mother Nature still has a way of messing with me, though. For most of my visit, the sky was overcast and the temperatures were in the low to mid-60s, but it wasn’t snowing so my friend and I made the most of it.
I used to have another kind of Florida oasis. I was in a long-distance relationship for almost two years. While I was finishing graduate school in Baltimore, he was attempting to get a job in the field of digital animation and visual effects in Orlando. I graduated, but he never got the job so he moved back to Baltimore, and we moved in together. Continue reading
This Veterans Day I would like to highlight something a little different on Sugarcoated – the concept of diabetes veterans.
I was diagnosed late in life at 22 (well for Type 1s, that is). I had missed out on growing up with the disease, among the support of family, friends, and fellow juvenile diabetics. Yes, I say “missed” because ever since I was diagnosed, I’ve felt largely excluded from the Type 1 community. Maybe it’s why I’ve never involved myself with organizations like the Juvenile Diabetes Research Foundation (JDRF) until now.
Because you see, I had a different experience than most Type 1s I meet. They were diagnosed at six or 13 and remember attending diabetes camp and having their moms pack them juice boxes for even the shortest trips. I’m not saying their diagnosis wasn’t daunting or depressing because after all, it’s still an incurable chronic disease. But in growing up with it, they developed a stronger support system. Through camps and fundraising events, they met other diabetics like them. They became friends; they shared stories; they didn’t feel alone. Continue reading
Photo credit: Sandy Hunt
I swing alone. My feet now touch the ground. The figure eight chains are rusted. The black u-shaped seat is worn at the edges. I wonder for how long it will hold my weight. I am much bigger now, but I still love the feeling of when my feet leave the ground. For a fleeting moment, I wonder if they will ever return, and then gravity brings me back to reality. I swing alone. I do not belong here anymore, but I also do not want to leave.
The red and brown leaves fly across my shadow in the direction of the setting sun. I envy their journey, but I do not envy their withered state. They are at the end of their lives. I should be beginning mine, but ever since I turned twenty-two, I feel lost within this body. I feel like it’s slowly giving up on me. From a pancreas that doesn’t work to a series of infections to chronic pain to now an IT band that won’t let me run, I feel like it’s shutting down on me. It’s at the end of this journey, and although I know I have years left, I don’t know what quality that will be.
It will let me enjoy one last swing, but it will not let me enjoy the simple pleasures in life – the simple luxuries our physical beings allow. I cannot eat what I want; I cannot exercise how I want, and I cannot have a long-lasting sexual relationship. My mental state has never succumbed to my body – it’s only succumbed to itself, but how much more can my mind take? Can a mind be free with a useless body? Can a mind truly enjoy life with a body that’s slowly withering away? Continue reading
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
I don’t like to carry much. I used to avoid carrying a purse or bag. But I also like to be prepared. And with diabetes in tow, it’s hard to do both.
Like today, my blood sugar started dropping once I left the office even though I had corrected the last low two hours ago. I couldn’t for the life of me find my glucose tablets, but I did have Gatorade on hand, so for now, my blood sugar stabilizes.
Here’s what I always carry with me:
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: