I have taken over 20,500 insulin injections over my life so far. That’s a lot of syringes. I’ve pricked my fingers about 30,000 times. It’s what we as Type I Diabetics must do to check our blood sugar. Now I only need to prick my fingers twice a day. I wear something called a continuous glucose monitor. My CGM is usually worn on my arm. I’ve pretty much decided it officially makes me half cylon.
The day I was diagnosed was July 10 of 2003, ten days after my 18th birthday. During that summer, after my high school graduation, my days were filled with lifeguarding, zipping around town in my T-top, white, 1998 Camaro, wakeboarding on Lake Travis wiping out every other turn, and a steady diet of pizza.
I had not been feeling well on that particular day. My mother said, as she always did when one of us was feeling ill, “Test your blood sugar.” She had been a nurse for eight years already and had been caring for my TID younger brother for about ten. With eyes rolling, I dragged my feet downstairs to do the obligatory finger stick to humor her. Earlier I had devoured some pepperoni pizza, a slice or two of chocolate cake (Carinos’ chocolate cake which is the BEST in the world), and had washed it all down with half a bag of sour patch kids.
Usually I would fake it and call out, “It’s FIIINE, mom, 98!” but this time I sensed I should follow her advice. The meter counted down the five seconds and read, 480. I guffawed to myself thinking I must have had sugar on my finger from my candy craze earlier. So, I tested again. It read 485. I stumbled into the living room and collapsed on the floor letting out a wail. My mom flew down the stairs. The look in her eyes was enough to register she already knew the answer to why I had sounded such an alarm.
Within moments my brothers and father were surrounding me. We all wept. It wasn’t just a few minutes after that the doorbell rang. It was my first date with a boy I had met on the fourth of July. I opened the door and dramatically sobbed, “I have diabeteeeeees.” Before he knew it he was loaded up into our family car, all six of us packed in tightly, and carted off to the hospital.
TID is also referred to as Juvenile Diabetes. Only 5% of diabetics are TID. The disease is caused not by diet and exercise rather the immune system turning on the body and killing off the insulin producing cells in the pancreas. Most people are diagnosed under the age of twelve. My brother had even joked that since I was no longer a child, being 18, I was in the clear of ever being diagnosed. To this day I am a firm believer in knocking on wood.
When we discovered my brother had TID I was terrified. He had slowly been wasting away (TID prevents your body from storing fat if untreated) for over a year. My parents had been seeking answers everywhere from the city’s best pediatricians to homeopathic doctors. It wasn’t until my father took him to the ER refusing to leave that they did something. His son was obviously at death’s door. My brother was only six. Being three years older than him, my mom trusted me to stay home alone with the neighbor boy (I hadn’t gone boy crazy yet so she had no idea what was in store for her down the road). She raced off after them to the hospital. It wasn’t too much later in the day she called home and told me the news, “Your brother has diabetes.” I hung up, looked at the boy, leaned my head on his shoulder with tears in my eyes and said, “My brother has rabies!”
As the years passed diabetes became a part of all of our daily lives. From time to time I would overhear my mother’s fears about his future and all of the complications TID can cause. It was terrifying and I believed the universe had spared me because lord knows I loved flip flops and couldn’t imagine having to wear tennis shoes all of the time (feet are a big issue with TID due to how it prevents wounds from healing). One of my first thoughts when I was diagnosed was how screwed I would be because I ran around outside like a wild banshee all day.
Even though my life had changed dramatically, I still moved into my university dorm that fall. I also still lived life as if nothing had changed. Halle Barry is a TID and I heard an interview where she said it took five years for her to get it down pact. So I thought, “I’ve got five years until I’ve gotta figure this thing out.” Five years passed, then ten, and even though I had a mother who begged, pleaded, and prodded me to take better care of myself, I always waved her off saying, “Mom, I’m perfectly fine!” I would test my sugar every now and then, take my shots hours after I ate, and sometimes would altogether skip my insulin. I felt and looked like a healthy person! I also ate like a superstar and was a yoga instructor (and we all know yoga cures everything in India).
My complications began to arise a few years ago. It happened so slowly it snuck up on me. At the time, I was a middle school teacher. I attributed my exhaustion and fatigue to stress and managing a classroom of 34 students. Eventually I went to the doctor and I was told I had a leaky heart. They recommended I reduce the stress in my life and really take my TID seriously. I resigned from teaching the next day.
But, that still did not move me to get my act together completely. There was a sense of procrastination when it came to accepting my TID just like most of us do when it comes to going to the gym. Every day I would tell myself, “Oh tomorrow you’ll test your blood sugar at all of the right times and take the right amount of insulin.” It wasn’t until 2016 when the gravity of my situation hit me.
My health was suffering to the point where I couldn’t hold down a job. My relationship of several years had deteriorated. I had a sense of dread and despair clouding my mind every day. I was confused. I really had no complaints in life! Why was I suffering on the inside so much?
Well, let me tell you. Uncontrolled TID messes with everything, even your hormones. My body was imbalanced from head to toe and it was screaming in every way possible for me to do something about it. Many mornings were spent with my head in the toilet after sleeping on the bathroom floor all night. I experienced uncontrollable bowels while out dancing with my friends (oh do I have some spectacular stories about that!). I kept my apartment at a cool 55 degrees because I felt I was about to combust half of the time. I drank gallons of water daily and looked as if you could blow me a kiss and I would fly away. Some days my vision would be so impaired I would have to pull over on the side of the road and practice squinting until I could see well enough to drive again.
My boyfriend and I eventually broke up and I moved out to LA back in with my parents. I planned on staying with them for a few months while I looked for a new job and place to live. Little did I know 2016 would be the toughest, roughest year of my life.
Every person experiences diabetes differently so I won’t go into the details of what I endured. However, I will share that I spent about a quarter of that year in the hospital, and the other three quarters holed up in my bedroom buried under my blankets. All of my complications came pouring out of me like the Hoover dam opening its floodgates. Gastroparesis, Retinopathy, Neuropathy, and then some really off the wall complications such as Dupuytren’s Contracture started filling up my medical records. I became incredibly depressed.
But soon I buckled down, turned it around, and started to change my daily habits. Towards the end of the year I had nearly done a 180 degree turn around. To celebrate, I decided it was time to start dating again! So of course, not knowing how to really go about doing that, I signed up for Tinder. I went on a few dates here and there but there was one date in particular that would change my life forever.
I can’t even tell you his name. But I can tell you what kind of motorcycle he rode, a Triumph. It was 9:00 at night and I was feeling restless. We had briefly chatted on text and he mentioned he was going for a ride around LA to check out the skyline. Giggling, I replied, “Why don’t you come pick me up, Night Rider?” and he did. We rode around LA for about an hour. I clasped tightly to him as we raced down the 405. I realized quickly over In-and-Out this was not a crazy Irishman I could ever see myself taking seriously.
He dropped me off back home and said cheesily, “You’ve inspired me to be a better man. May I kiss you?” I promptly said, “No.” (demurely of course) referring back to my Tinder caption OLD FASHIONED. He rode off into the night and I made my way up the old rickety brick steps to our house.
It wasn’t until I was showered and in bed that I noticed my sheets were wet. “What in the world?” I thought annoyedly assuming one of the dogs had dragged some slobber coated toy under my sheets. But to my horror, it was my feet! They were leaking fluid like water faucets.
The podiatrist would tell me two weeks later (yes I waited that long to see the foot doctor. Neosporin and gauze does NOT do the trick) that I had third degree burns down to the bone, even exposing some tendons in my toes. I had burned my feet on the Triumph’s tailpipes and had not felt the heat due to my already existing neuropathy.
I didn’t walk for nearly four months. I’m a gamer so I thought, “Perfect! Now I can hit level 60!” I saw the situation as a little break from adulting for a bit. So, when the doctor gave me the okay to walk again I was feeling even more ready and refreshed to get out there, get employed, and finally move into my own place.
My first day out on the town I headed to the mall to buy my interview outfit. I had just landed a dream job opportunity at a gaming studio and couldn’t wait to impress the recruiter. It was only after about two hours that my feet began to ache. Assuming they just needed a break, I went ahead and called it a day. The next morning my feet were black and blue. Still, I wasn’t worried. However my mother, true to form, made an appointment with my podiatrist the next day.
I knew everyone very well at the doctor’s office by that point and sat in the patient’s chair giving the tech advice about how to smooth things over with his wife, “Foot rubs fix everything and you’re the master at cleaning mine!” I said as he scrubbed my feet. Within a few minutes the doctor flew through the door in a rush and was in his stool poking and prodding at my feet. There was a quietness about him that usually didn’t stiffen the air the way it did that afternoon. He smacked his lips together and said, “Well, we need to get X-rays.” I was planning on going on a blind date immediately after my appointment so I hobbled off as quickly as I could. Before we left I mentioned I had plans. The doctor said he preferred if I didn’t go unless the guy looked like Brad Pitt (which he didn’t so, that was a no go). It was only a few days later the doctor sat my mother and me down and mentioned something that sounded like, “Shark Hot Foot” which I found really funny. It’s actually not really that funny.
Charcot Foot is a very rare condition that affects people with diabetes. It is an autoimmune disease which causes the bones in the feet to break when one walks on them. Doctors don’t know much about the disease except for the fact that the circulation pumping through the bones causes them to splinter and crack from within during acute episodes. Acute episodes occur when the immune system decides to go Rambo and attack the feet. Medical professionals still do not understand what triggers a “flare”. It’s during these episodes that the bones break and crumble. Healing can take months and a lot of people find themselves wheelchair bound. Most only have Charcot in one foot. I have it in both.
Now, here I am. I’m currently in a wheelchair but hope to someday walk again with the aid of orthopedic shoes and a walker.
It did take me a few weeks to process this news. I probably (most likely definitely) still have a lot of processing to do. However, the moment I realized how life changing this condition would be I closed my eyes and thanked my lucky stars. I thanked the world for preparing me in 2016 in a way nobody or nothing could have. If it had not been for all of my trials and tribulations I don’t believe I would have had the strength to accept such life altering news. I now know that all of the pain I have endured was to prepare me for Part II of my life, which is already filled with wonder and awe of the community of people I’m discovering who live with disabilities every day.
In closing, if you were to ask me for one piece of advice after everything I have been through so far, I would say, “No matter how terrible it may seem right now, know you are being prepared to do something great.” I have never recognized my purpose as fully as I do now. And that purpose is to help, even if it is just one person, but hopefully many people, to understand TID and its complications and to see that life can still be an amazing thing to live.
If you are a TID, or you’re the loved one of a TID, you’re courageous, you can do this, and I will always be here if you need someone to cry with, vent to, or just ask a simple question. As my favorite poet of all time would say, “Let the great world spin for ever down the ringing grooves of change.” - Alfred Lord Tennyson