A few months ago, and only a few years late, I received my 10 year Lilly Diabetes Journey Award medal (application here).
At work, and along with people affected with type 1 diabetes around the world, we have been mourning the death of tireless diabetes advocate, Mary Tyler Moore. Similar to me, she was also diagnosed with type 1 diabetes as an adult. One of the most inspirational parts of her story for me is that she did not let diabetes stop her from living the life and having the career she wanted. I imagine that it was scary for the producers to fund projects she was involved in when they were unsure about her health and how diabetes might impact the production. Her success paved the way for other people with type 1 diabetes to follow their dreams. She was one of the first to prove that people with diabetes can do anything that anyone else can do, just with a little extra planning.
While still in the hospital fourteen years ago, my first endocrinologist told me to go on my planned road trip vacation that was only a few days away. His idea was that I could have diabetes anywhere, so I may as well take it with me where I wanted to go.
Let’s see where I can take it before celebrating my fifteenth year.
I know I’ve shared the story before but when I was diagnosed with type 1 diabetes during my last year of college, my friends were the ones responsible for getting me to the hospital and saving my life. The rest of the story is that they also jumped in to try to help me manage all aspect of my new life.
We planned meals together. They offered to give me my insulin injections. But the first thing we tried to do together was get a little exercise.
It was within a few days after I got out of the hospital after my diagnosis. There was a loop around the college campus that was only about 3.5 miles, and I had run it many times before – although not recently on account of the “unexplained” health issues pre-diagnosis. My best friend hopped on her bike and I borrowed a bike from another friend and we set off around the loop.
Over a decade later, I can still remember how awful I felt that night. I was still adjusting to taking insulin, so my BG quickly dropped when I started pedaling. I had been so sick for so long, but I didn’t realize what had actually happened to my muscles during that time. It was not until a few blocks away from the campus that I realized I really didn’t have much leg muscle left and how absolutely exhausting it was becoming to pedal. I got about halfway around the loop and I couldn’t ride another inch. After more than a decade, it remains one of the absolute worst feelings I have had related to diabetes.
And until recently, it was the last time I got on a bike.
I don’t let diabetes stop me from doing what I want to do in my life. Skydiving? Sure. Snorkeling in the Red Sea? Why not. Participating in disaster relief in Haiti after the earthquake? Twice, actually.
But, for some reason, I was continuing to let diabetes stop me from getting back on a bike. After having the opportunity to visit the JDRF Ride to Cure Diabetes last November in Tucson, and learning more about the ride program, I decided it was time to break down this last barrier.
I bought a bike four days after leaving Tucson. It turns out the saying is actually true – after thirteen years I still know how to ride. I’m working on building my distance now and figuring out how to balance my BG while I ride.
And on November 19, 2016, I will be riding 104 miles for the JDRF Ride to Cure Diabetes in the El Tour de Tucson.
Today, in honor of my 13th diaversary, I am asking for you to support my ride efforts. Please consider donating $13 in honor of each year I have lived with diabetes.
Thank you so much for the support.
P.S. I know I haven’t written in months. Alanna really explained it best here (in November).
The morning after I returned from my first trip to Haiti in 2010, I turned the TV on for background noise as I unpacked my suitcase. As a group, we had spent several hours the night before processing the trip, and the next morning I just wanted some static for distraction.
I can still remember the line from an episode of House Hunters that made me turn off the TV and throw my remote across the room in anger. As in most episodes, a married couple was searching for a house for their expanding family. While they toured the second floor, the wife looked over at her husband and whined, “I don’t want this house; the bedrooms are too close together.”
I had just come back from a country where people were living in shacks held up with sticks and tarps. A country where you could tell if a child was malnourished by the red tinge of their naturally brown hair. A country where the diabetes supplies in the local clinic amounted to a vial of insulin and a bottle of test strips sitting out on a folding table.
Yesterday I received my new Animas Vibe insulin pump. I have medical insurance that enables me to afford a medical device that costs thousands of dollars and a job that enables me to cover the balance of the costs. I have a butter compartment in my fridge that contains enough insulin that I am not worried about how I will survive the next few weeks or months. I have the luxury of making decisions about my diabetes care, choosing treatment options that aren’t necessarily the cheapest on the market.
I understand my privilege. At the same time, I am not content. I never want to be the type of person who complains about bedrooms being too close together while forgetting that others have no bedrooms at all.
Nine days ago I offered to match up to 24 donations of $10 to Spare a Rose, Save a Child between my diaversary that day and my birthday today. So far, the best I can tell (between comments and Facebook notifications), I am only at $120 – half of the total match. That amount is the difference between saving the lives of four children for one year and the lives of eight children for one year.
Please consider making a donation today and leaving a comment on this post so I will know how much to match. Tomorrow I will celebrate Valentine’s Day by saving the lives of children around the world. I hope you will join me.
For quite a while I wondered if the pieces of my diabetes diagnosis story that I remembered were actually accurate. My brain was clouded with sugar at the time so I wasn’t sure how much of my memory was to be trusted.
Around my tenth diaversary, I contacted the hospital where I had been admitted to obtain my medical records. I filed them away and only started thinking about them again recently after visiting the newly diagnosed son of one of Wendy’s friends.
My records from that hospital are a struggle for me to read. I think back to how sick I felt for so long. I was just so tired all the time. My clothes were falling off me and I could only wear tie-on shoes because anything else was too heavy for my legs to carry. Even then, I was exhausted to the point of tears just getting from class to class. By the time I was admitted to the hospital I felt like I couldn’t catch my breath. No matter what I did, I could not breathe deeply enough. The symptom that finally convinced me to go to the emergency room was when my heart started to hurt. It wasn’t a sharp pain or heartburn, but an actual ache in the area of my heart.
I suppose phrases like “out of control” are accurate for insurance purposes, but don’t quite seem fair since I had no say (or insulin) in the situation. The diagnosis mentioned from almost a year prior refers to the diagnosis of type 2 diabetes when my blood sugar was 208 mg/dL with a kidney infection. The report seems to imply that I chose to stop taking oral medications or that I did it against doctor’s orders. In fact, it was specifically a doctor’s orders to stop taking the medication and to control my diabetes with diet and exercise.
When my blood was finally drawn for lab work, in addition to an A1c indicating sustained blood sugars at least over 350 mg/dL for months and high levels of ketones, the reports show that just about everything they measured was out of range – high hemoglobin, irregular red blood cells, high white blood cells, very low sodium, very low potassium, high chloride, low CO2, low BUN values, low creatinine levels, low calcium, and on and on.
However, if there is one thing that convinces me of the continued need for diabetes education and advocacy in every community it is the final diagnostic notes from the endocrinologist as I was discharged from the hospital.
My diabetes diagnosis was in 2003. That just a little more than a decade ago – not the dark ages of medicine. How is it possible that a medical professional, one that specializes in diabetes management, could not only believe that statement to be medically possible but also record it in a patient’s chart?
I watch a lot of TV so when I was trying to figure out what to title this post, all I could think of was the clips they show you before a new episode begins. It’s been about a month since my last “real” post so I feel like to catch up I have to stick with the clip version or this would turn into a miniseries.
The drive across the country was largely uneventful diabetes-wise. That in itself may have been remarkable considering the amount of fast food and gas station snack food consumed. Sometimes I think packaged food may be “easier” to eat with diabetes because you know a pretty accurate carb count for a serving size.
I had a small insulated lunch bag that I stored my insulin in during the trip with a few ice packs. Most of the hotels we stayed at did not have refrigerators in the room but they would put the ice packs in the lobby freezer so they would be ready for me in the morning.
I moved exceptionally close to family so when my dad and I arrived in town early afternoon on Superbowl Sunday, we had just enough people and just enough time to unload the truck before kick off.
I wrote a quick post on the day I celebrated my 10th diaversary.
Nine days later I celebrated my birthday.
In between those two dates, I started my new job. Little by little I am explaining the beeps and buzzes that come from my side of the office. Pretty much everything about this job – the hours, the people, the environment, the routine – is different from my previous job. I think there are going to be some unique opportunities here and I am excited to explore them.
I am completely addicted to Candy Crush and it is all Meri Schuhmacher’s fault. The only relief is the satisfaction in blowing up all that sugar.
I watched my niece and nephews over night on Valentine’s Day. One of the kids had some trouble sleeping and I was up every few hours throughout the night. I felt like I got a glimpse into the nightlife of the parents of children with diabetes and it is not something I am interested in repeating.
And with that, I think I’m all caught up!
Ten years ago tonight I almost died. I had gone to urgent care the day before and the PA told me to make an appointment with an endocrinologist as soon as possible to be put on insulin. The earliest appointment was four days later. When I was admitted to the hospital that night through the emergency room, the doctor told me I probably would not have made it to that appointment.
Ten years ago I started a new life, a life with diabetes.
I guess it is only fitting that today I started a new life too. I spent most of the day unpacking all my stuff in my new place. The new job will start later in the week.
Tonight, the first order of business was to find a good cupcake… or two.
First, the giveaway news –
Congrats Bigfoot Katy! Click on the envelope to the right to send me your mailing address.
Second, speaking of mailing address –
I guess I’m about to have a new one. I’m still getting used to talking (and writing) about it but after seven and a half years at my current job, I gave my two weeks’ notice on Friday. I’M MOVING!!!
If it’s quiet around here for the next few weeks it’s probably because I am trying to leave things organized at work, packing boxes, cleaning my apartment, or driving 2520 miles across the country.
And if all goes as planned, I will arrive at my new apartment just a day or two before my 10th diaversary and about a week before my birthday!
Not sure what else to say other than – EEK!