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:
Sometimes, I wonder how much more my body can take. At some point, I’m just on auto-pilot, and at the end of my 16-hour day, I’m surprised I’m still functioning, considering I’m one of those people who tries not to take the same route twice (for safety reasons and to mix it up a bit).
Today is one of those days. In addition to physical stress, I am overwhelmed by a whirl of emotions, a reaction to pending changes in my life. I’m preparing to move (again); helping other friends prepare to move; finding new friends and some desperately needed R&R while working for a promotion at the first job I’ve ever cared for. Some may say I’m 27 – this is normal.
But with the additional management of a chronic disease, changes in insurance status, filing claims, switching doctors, acquiring new scripts for that coveted 90-day supply, it’s a wonder I accomplish anything. And as a side note, what’s the point in having an FSA debit card if I have to submit receipts, explanation of benefits, etc. every time I use it?
Rewind 10 years…
I sit on the swing set of a small park near my best friend’s apartment in Louisville, Kentucky. As the sun fades, the crickets come out. I love their sound as long as I don’t have to step near their ugly brown spotted bodies that used to roam our basement and give me daymares.
My best friend Maria and I agreed to meet here one evening in June, the summer before we left for college. She would stay in Louisville. I was destined two hours north for Cincinnati.
We met freshman year of high school waiting for our moms to pick us up outside the new building to our all-girls school. We started talking about politics and cultural events. We philosophized about life and love and by the end of the year, we had become best friends. Continue reading
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:
I never say in job interviews or on my first day that I’m diabetic. Legally I cannot be fired or reprimanded for my medical condition, but I make a conscious choice to pretend it doesn’t exist, like I’m “normal.”
Of course people warn me that I should tell at least someone I work with about my disease. Even though I manage it well, anything can happen and someone should know what to do in that situation.
Eventually, I do. I make a friend or someone asks about my pump or my glucometer, and then that follows with 10 million more questions about diabetes: what’s the difference between type 1 and type 2, can I eat sugar, do I have to take injections, does it hurt, etc., etc.
I’m happy to answer these questions. When I was diagnosed at age 22, I didn’t know what diabetes was much less how it would change my life. Why would I? I studied psychology in college. I was more familiar with the symptoms and repercussions of bipolar disorder than what a normal blood sugar range was. So I’m always happy to share my first hand experience with others. Well, almost always.
Not every day is easy with diabetes. Not that it should be. My pancreas doesn’t work so technically I can’t properly digest food so technically, five years after my diagnosis, I shouldn’t be alive.
I should be thankful for technology, thankful that even though these medical supplies cost me a ridiculous copay, they keep me alive – they help me maintain an overall good quality of life.
I should be thankful, but there are days when I come home from my two-hour commute from DC and I stand in my walk-in closet debating what outfit I should wear tomorrow and then I lose it. I just sink to the dilapidated hardwood floor and start sobbing.
Okay maybe there’s more to it than that? Maybe it’s been a rough day? Maybe I’ve been having highs all day for no apparent reason other than my hormones started going crazy? Or maybe I’ve spent half the day going back and forth from the insurance company to the pharmacy to the doctor’s office trying to get my 90-day supply of test strips covered? Continue reading
The vibrating wakes me up for the third time this night. It’s 3 a.m., and my new continuous glucose monitoring system (CGM) says my blood sugar reads 55. I know it’s a lie. I recently checked my blood sugar, and it was stable at 93. I have no active insulin in my system, but I just started this CGM, which I have decided to call “Cosmo,” and the nurse said it may take a few days to reflect my actual blood sugar. It’s a shame, but in the few weeks that I’ve had Cosmo, I still won’t give it up.
In the almost five years that I’ve had Type 1 diabetes, I’ve thought about investing in a CGM, which uses a sensor to monitor my blood sugar 24/7, but there can be a 20-minute delay since it’s reading my glucose levels from the interstitial fluid (a thin layer of fluid that surrounds the body’s cells), as opposed to a glucometer that reads it from a blood sample. I’ve always erred on the hypoglycemic side – two seizures in my short history as a result.
But in addition to the added expense of a CGM (my health insurance history has not been very consistent), I didn’t know if I wanted a 24/7 reminder of my diabetes. I wasn’t sure I really wanted to know how much two pieces of bread or pasta or ice cream affected my blood sugar in the three hours I didn’t check it with my glucometer. Even though by the time that three-hour period had passed, my blood sugar returned to a normal state of 80-120, it didn’t mean that in that time, it hadn’t spiked to 300 and come back down. Did I really want to know that? Continue reading
I’m driving my grandma’s formerly owned 1993 Geo Prizm down Taylorsville Road in the suburbs of Louisville, KY. My boyfriend at the time sits in the passenger seat rocking out to Blue October. We’ve seen them twice in concert, once at Louisville’s Fourth Street Live. We’re visiting my family for the weekend, just a few weeks after I was diagnosed with Type 1 diabetes. I will be the first in my family to graduate from college in Cincinnati in a few weeks.
I start to feel shaky and weak, but I don’t tell Reed. He recently shaved his head to mask his receding hairline at 22. His former football player fingers tap on his torn jeans. I focus on the yellow lines of the road. We’re only a mile from home – no reason to pull over. I can beat this. Come on Tracy, focus.
My peripheral vision goes fuzzy. Only half a mile now. I stop at the red light at the four-lane intersection of Taylorsville and Hurstbourne Lane. One moment of reprieve.
“Are you okay?” Reed asks, no longer whistling.
“I’m fine,” I say, still focused on the hazy yellow lines.
“You just seem really tense.”
“Let’s get back to my parents’ house, and I’ll explain.”
I pull into the three-car driveway, off to the side, in front of the rose bushes. I run into the one-level brick house. I am as much curious about the state of my blood sugar as I am worried. Reed finds me in my old bedroom, painted a faded blue.
“Whoa, 51,” I say, more out of amazement than concern.
“I don’t think I should have been driving,” I add, heading down the black and white tile hallway to the kitchen for some juice. I’m almost proud that I didn’t have an accident rather than regretful.
“Probably not,” Reed says, his eyebrows raised. Continue reading
One of the biggest fears of any single young woman is getting pregnant. I feel this is tenfold now that I have Type 1 diabetes. The stress of affording my own health care is enough – I don’t want the added physical and emotional burden of surviving pregnancy with diabetes much less affording my child’s coverage (given the possibility that the child will also have diabetes). No one can yet prove that my diagnosis was a result of genetics, but they cannot disprove it, either. I’d rather not take the chance.
In the past five years, I have attempted different types of birth control. The pill was always the easiest and most reliable option, but low and behold, no matter how many different types I tried, it always had a negative impact on my blood sugar readings and insulin resistance. What does this mean?
Well, while on the pill, my blood sugar skyrocketed, and I needed to take more insulin to keep it stable, but then, during the week of my period when I wasn’t on the pill, my blood sugar plummeted so that I would experience severe lows and have to readjust my insulin to carb ratio. You would think I could account for this every month, and believe me, I tried, but there was no telling when that initial plummet would happen. Sometimes, it was a few days before my period; sometimes, a few days after. The following week when I started taking the pill again, my blood sugar would rise so that I would constantly be adjusting my insulin to carbohydrate ratio until I got it right. It seemed to vary month to month.
Because I was tired of the constant ups and downs and the effect the pill had on my hormones and my emotional sanity, a few months ago, I stopped taking it. Cold turkey. I knew my body before I started the pill and relied on its natural cycle, but that was before I committed myself to long-term relationships. Now it was time to trust it again. It certainly improved my blood sugar readings. Continue reading
I haven’t always listened to my emotions. In fact, there was a time I suppressed them.
I grew up in a household of boys, my poor mother and I alone in the chaos of male destruction. But as much as I revere my mother, I was a daddy’s girl. Besides the whole Oedipus complex, I’m starting to understand why. My mom was rational, and my dad, like me, was emotional. But since he was a man’s man, he never showed it except when he became angry. My dad was the type of man to have teary eyes at the end of movies like It’s a Wonderful Life and Armageddon, but only if he was alone.
The first time I saw my dad cry was when I was ten. I followed him into the basement. We had just returned from vacation, and we came home to a dead dog. The Yorkshire Terrier was 12 years old and had gotten his collar stuck in the holes of our picnic table in the backyard and choked himself to death. His name was Tiger, and he had been my dad’s wedding gift to my mom. My mom had wanted to put the dog in a kennel while we went camping, but my dad decided to keep him at home and have a friend come by after work each day and take care of him. When we came home to a funeral (the dog was rather loved among our extended family), my dad felt responsible.
So when I went downstairs and saw Tiger’s motionless body in a cardboard box, I couldn’t make the connection. This wasn’t Tiger. It was just a stuffed animal that looked like Tiger. But when my dad saw the dog, his guilt overcame him, and he started choking on his own sobs. I ran back up the stairs then, terrified. I’d never seen my dad lose it like that, and I vowed I would never do the same. Continue reading
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
Sugarcoated 