This GUEST BLOG comes from the awesomely positive, Leslie Brown, age 25. I met Leslie while hosting and speaking at the 2011 Diabetes Mixer in Salt Lake City, UT this October. Her energy is impossible to ignore, and despite having had diabetes for just over a year, she’s discovered a few valuable things about life with this silly disease.
Science Fiction Turns Into Medical Science
It sounds like a plot from a science fiction book – The body’s defense, the autoimmune system, goes haywire and attacks the body. It ravages the pancreas to the point of death unless the person injects himself with tiny droplets of a magical serum called “insulin.”
Or, rather, this was a poorly planned coup d’état. The autoimmune cells were full of vigor and force but lacked foresight. The damn military didn’t have a plan once it overthrew my pancreas.
In other words, my autoimmune system swarmed the beta cells like ants march to a melting Popsicle by a park bench. The ants left nothing.
However you look at it, Type 1 diabetes is a bugger. It’s not easy and it doesn’t go away. (I tried. I told it I didn’t want it around. Didn’t work.)
Then again, knowledge is power, and it was a relief to figure out what was going on with my body. One October night I felt especially awful and started to research my symptoms. I followed a chain of links that eventually led me to a description of Diabetes Mellitus Type 1. (On a side note, until I was researching that night, I had NO idea there were two types of diabetes. Go figure. Two!) After I read the symptoms, it clicked.
It all made sense: Earlier that day, I ate a sandwich and an entire family-size bag of Lays potato chips in one sitting. An hour later I was starving. Forget carrots – I then ate a 12 ounce bag of peanut M&Ms. Still hungry. It didn’t matter how many calories I ate, I kept losing weight. I could pull off my hip-hugger pants without unbuttoning them. Because I was losing so much weight I stopped biking to work and stopped running a week before. That was an easy commitment. I was too exhausted to walk up the stairs without leaning against the wall to rest. My vision had turned abysmal, and I had troubles reading street signs 20 feet ahead of me. I had been drinking my weight in water and peeing at least 14 times per day. Also, my sweat glands were overactive, especially at night. A week before, I woke in the middle of the night because sweat saturated the bed. My boyfriend, horrified, thought I peed the bed. (I didn’t.)
I turned from the WebMD page to look at my roommate. “I think I have diabetes.”
The following morning the doctor confirmed my suspicion. As I sat in one of those vulnerable hospital gowns, he said, “Leslie, you have diabetes. And no, it doesn’t matter that you ate a pear for breakfast. Your sugars should never be 680.” To which I responded, “!*#$. I thought so.”
My pancreas’s funeral
Because I was 24, my new physician was dubious of the ER doctor’s diagnosis. This was not normal to her: I wasn’t a juvenile, my symptoms manifested relatively slowly, I recovered relatively quickly after getting on insulin, and relatively speaking I didn’t need require that much insulin. She concluded that I had MODY or Type 2 – at which point I passed out. I’m embarrassed to this day to admit that. I was nodding my head confused one minute and then wilted over my lap the next. With that mind-power it seems like I should be able to tell diabetes to go away … because I have Type 1. Lab results negated that I have Type 2 or MODY and indicated I do indeed have juvenile diabetes.
Even the second time around, it wasn’t easy. The prognosis went like this: if I weren’t producing insulin as a Type 1 diabetic, I needed to take as much insulin as a normal, insulin-producing person. Right? The doctor prescribed that I take more insulin. I couldn’t walk around the block without eating 200 calories in lemon-lime GU, and I had this nagging feeling that my glucometer sometimes fibbed.
So I did what any normal person does: I threw a funeral for my pancreas. I invited my friends to celebrate the life of my oblong organ with wine and carbohydrates. One of them even brought white lilies to commemorate my pancreas. It’s amazing how much easier it is to cope with death (ok, death of an organ is still difficult) with friends and laughter.
The dark age
Regardless that I had people to share laughs, I was still coping. My body had betrayed me. I had been stripped of my identity and independence. Hypoglycemia and fear of hypoglycemia made it difficult to carry on normal activities. At age 24 I found myself losing touch with the person I had been growing into: an independent person who liked to explore through hiking, running and biking; who liked to go on road trips; who liked to bake; and who stuffed her pockets with fruit, not candy. Instead, I was turning into someone who was scared to be alone.
The following six months were a flurry of ups and downs. Simply put, I was depressed. I felt isolated, frustrated and helpless. Depression is an important facet of this disease, and it’s grossly overlooked in many medical management plans.
I don’t know when it started to get better, because it didn’t happen all at once. It was a slow progression. I did know that in order to kick those emotional lows, I needed to mitigate those blood glucose lows. When I dropped low, terror pulsed through my veins. I felt like I was running from dinosaurs in a very bad nightmare. A few times I was combative and irritable. Other times I just felt overwhelmed and infantile. Most times it took me a while to recover, and the low left a disempowering residue on my day. Regardless of what scary face The Low put on, I needed it to stop showing up so often.
Although I enjoyed my new physician on a personal level, I was experiencing hypoglycemia regularly. I decided to see another physician who specialized in working with Type 1 diabetics. He helped me understand the disease better and instilled confidence in me. I also started on a pump and CGM. I hate to say that technology revolutionized my life, so I won’t. Instead I’ll say it made it easier to act as a surrogate pancreas.
Technology and time decreased The Low’s daily appearances in my life. I went to the library and checked out every book related to Type 1 diabetes and scavenged the Internet for articles. I kept a diligent food and exercise diary so I could trace patterns in my blood sugars. Through managing variables I could control, I reclaimed parts of my life. My boyfriend (the one who thought I peed the bed – I didn’t) carried GU in his every pocket and patiently worked with me to manage my sugars while backcountry skiing and hiking. Throughout the last year he’s been with me through highs and lows (literally) and helped me laugh at life. Humor and good people (like the kind who come to a pancreas’s funeral) are arguably just as crucial as insulin therapy. A good attitude disempowers the disease.
I’m the proud owner of a delinquent pancreas
That’s right, I said it: I’m the proud owner of a delinquent pancreas. I love and accept my pancreas for what it is, albeit delinquent.
It took me a while, but I finally accepted that I’m diabetic, and I need to adjust accordingly. Adjusting. Planning. Observing. Using patience. Finding humor in the frustrations. Through employing these habits, I’ve recaptured the lifestyle that makes me happy. Diabetes can be a bugger, and I can’t manage great sugars all the time. But that’s part of having a delinquent pancreas, and I accept myself for who I am: I’m a diabetic who explores through hiking, running and biking; who likes to go on road trips; who likes to bake; who stuffs her pockets with candy; and who approaches life with a sense of humor.