Wednesday, November 10, 2010

My Diagnosis Story.

I was diagnosed with Type 1 Diabetes at the age of 11, when I was in fifth grade. There are some things I remember very vividly, and a lot that I was just told about. I probably should have asked my parents to help fill in the blanks in my memory for this post, but I promise, it will still be riveting without their input. So, this post is a lot of what I remember, but much of it is also the narrative of my diagnosis that they have told me over the years.

It was the end of the winter, almost spring, and I started getting REALLY sick. I remember feeling generally unwell for a few months before my diagnosis and before I got acutely sick. Specifically, I remember being constantly thirsty, and never being able to get enough to satiate my thirst (which, we now know is a HUGE sign of Type 1 diabetes). Also, I remember having to constantly pee SO BAD that I thought I would pee my pants if I had to hold it for any length of time (also, a HUGE sign of Type 1).

In my fifth grade class, we had this weird bathroom pass list, where everyone had a “bathroom buddy,” and each pair of names was listed in a row on a poster on the black board. There was a magnet that would be placed on the top of the list at the beginning of the day, and each “pair” could use the bathroom once the magnet hit their names on the list. When you got back from the bathroom, you moved the magnet down the list to the next pair of names, and you just kept rotating down the list like that all day long. Well, my name was about half way down the list, and I distinctly remember feeling like I was going to DIE because I had to pee so bad, but the magnet wasn’t on my name yet! Crazy!

Well, anyway, one week I got what we thought was the stomach flu. I was out of school for a couple of days, and vomiting and stuff. My parents called our pediatrician’s office, because I just wasn’t getting any better, and I was losing a LOT of weight, but they said that there was a stomach bug going around, and to just give it a few days to work itself out. I remember one of these days when I was really sick, feeling SO thirsty and “dried out,” that I asked my mom to let me just sit in the bath tub. So I got my swimming suit on, and just sat in the bathtub for awhile. In reality, I was probably really dehydrated, and thought it would feel good to sit in water. Finally, one night I was SO sick that I started to hallucinate. My parents said that I had lost so much weight that I “looked like a Somalian Child.” (just FYI, they’re not racist, there just happened to be a really bad famine in Ethiopia/Somalia at that time that was being reported in the news a lot, and this was the best way at the time that they could describe the extent of weight I actually had lost)

I remember distinctly hallucinating that I was a member of the Grand Ole’ Duke of York’s Army , and that we were marching up to the top of a hill, and marching down again, like in the nursery rhyme song. In my hallucination, the hill was a really weird, bright green, cartoon-ish (like Mario Bros.) hill, and we stopped and hid in a bunker in the middle of the hill and had to shoot out of it. Trippy! But, I still remember it to this day. My parents also said that I was talking all kinds of nonsense about there being a train in my bedroom too, so I must have been hallucinating about that too! Who needs LSD?! Just get diabetes! (Kidding!)

Well, that same night that I started to hallucinate, I apparently also started to turn blue. The pediatrician was still telling them I probably just had the stomach flu, but their parental instincts kicked in and they decided to take me to the Emergency Room. They asked a friend to come over to stay with my brother at the house that night while they took me to the ER. When we were getting ready to leave the house I asked if I could bring “My Envelope” with me. They couldn’t figure out what I was talking about, but after a little bit of pointing, I’m sure, they finally figured out that by “Envelope” I actually meant “Blanket.” So they wrapped me up in that big yellow blanket, put me in the car, and drove me to the hospital (only about 2 minutes away). That big yellow “Envelope” became my security blanket. I even took that thing to college with me, and just barely had to throw it away a few years ago because it was seriously shredded. Ahh, the Envelope.

Well, we arrived at the hospital, and they took one look at me and knew there was something seriously wrong. I remember being placed on a stretcher, and they immediately started poking and prodding me. They asked me to lie still, and hooked me up to an IV. I remember asking one of the doctors or nurses (they were kind of just a big blur of humans to me at that point) if I could “Lift my Desks Up.” Obviously, they had no idea what I was talking about, so I asked several more times, and finally in frustration pointed to my knees, saying “my desks!” They finally realized I wanted to bend my knees and lay with my feet on the table and my knees bent, and said that was fine. Turns out that really high blood sugar can mess with your brain so much, that you do stuff like mix up your words. ( I had trouble remembering simple words for MONTHS after that. One time I was just trying to remember the word “pencil” and I was SO frustrated! )

That is the last thing I remember until I woke up in a hospital bed. I had been admitted, and it was the middle of the night, and I was vomiting bile into the bed pan that my mom was holding. Really, gross, bitter, green bile. I still distinctly remember what that tastes like. And I remember my sweet mother telling me it was O.K., and explaining what it was, because I was confused and didn’t know what was coming out of my mouth. I’m not sure how long we were in the hospital when my pediatrician (who must have been called to come in) came in to our room and delivered the big news.

The story goes that he said “Well, your daughter has diabetes.” And then the second thing he said was “Send her to diabetes camp.” (Which, incidentally was probably the BEST second thing he could have ever said, and I will be writing an entire post about diabetes camp later!) I literally had almost died. I don’t know what my blood sugar was at diagnosis, but I was close to entering into a coma, and had my parents not trusted their parent instincts, things might have turned out a LOT worse. ALWAYS TRUST YOUR INSTINCTS!

Anyway, I’m sure the doc explained a little bit about what diabetes was, but I don’t remember much for awhile after that. I’m told that I asked if I would still be able to play my flute. I had just started learning how to play, and apparently I was really concerned that diabetes wouldn’t allow me to play it anymore! Also, I remember thinking, “oh, yeah, this is that thing that Stacey in the Baby-Sitters’ Club books has,” but not really understanding what that meant. Ahh, good ole’ Ann M. Martin.

Over the next couple of days, my memory is a little random. The bishop of our church came by, and he and my dad gave me a priesthood blessing. I remember the smell of the hospital linens and the disinfectant. And I remember that they had Tom’s toothpaste there that I could use. Random!

The doctors wouldn’t let me eat for awhile, and when they finally let me drink something other than water, they asked me what I liked to drink. I said “milk and apple juice”, so for about an entire day, they alternatively brought me milk and apple juice in a Styrofoam cup. It was a gross combination.

They started me on an insulin IV, and they also would wake me up ALL the time in the middle of the night to check my vital signs. Some times it was fine, because the nurse would use the ear thermometer, but sometimes I’d wake up to a nurse sticking a thermometer in my bum! NOT a fun way to be woken up in the middle of the night! What were they thinking?!!

I was finally allowed to eat real food, and I remember my first meal was a turkey sandwich and a pudding cup! I scarfed that thing down, and it is probably the best tasting meal I’ve ever had. I was SO hungry!

They wouldn’t let me leave the hospital until I could give myself my own shots, and they gave me an orange to practice on at first. That was kind of fun. Also, apparently I was pretty quick to start injecting myself, and didn’t really freak out about it that much. There was a dietitian/diabetes educator that came and taught me how to test my blood sugar (on an ANCIENT machine, btw), and taught us about how I would have to eat for awhile (at that time I used the Exchange Diet). And she gave us a book about diabetes. Also, I think my parents checked out every book from the library about diabetes that they could.

I think I was in the hospital for about a week, and I had a lot of visitors and cards and flowers while I was there. My best friend at the time, Margaret R., came and basically just hung out with me, which was great. She was an awesome friend. Also, my entire fifth grade class had made me homemade cards, and I still have all of those to this date, that’s how special they are to me! Plus, some of the drawings they made in those cards are fabulous, and I could probably use them as blackmail if any of them ever ran for president or anything.

Finally, I was stable enough that I got to go home. I remember walking out of the hospital and feeling the warm air and seeing that the daffodils had started to come up out of the ground. Winter had ended and spring had begun while I was in the hospital starting a new life. How very appropriate.

I’ve heard some people say that “diabetes is not a death sentence, it’s a life sentence”. In some senses, that is very true. You never get a break from the incessant-ness of diabetes. But, I generally try to look at things in a more positive light. When I think about my diagnosis, I actually remember it fondly. I don’t ever really remember being afraid when I found out I had diabetes. This is probably because I was so young, and because my parents were pretty good at not acting like it was a death sentence and telling me I could pretty much still do all the same things I could do before. I imagine it would be much more difficult if I had been diagnosed when I was older, or if my parents projected on me just how worried or scared they actually were. So, even though I do complain about diabetes a lot, instead of being bitter, I’m just trying to be grateful for that “life sentence” and focus on the word “LIFE!”

NEXT UP: Diabetes Myths!


  1. Erin I'm so glad you're blogging about diabetes and sharing your story. I remember distinctly the look on my mom's face when the doctor called her at home and told her to get my sister to Rainbow's.
    And I cannot wait for your blog on diabetes camp. I love that place!

  2. Such an interesting story! I've never heard it before. So, did you have signs of diabetes all growing up, or did the signals really develop around age 11 before your diagnosis. If they were always there, what did they consist of for you?

  3. The Weed-
    Basically, Type 1 diabetes develops rapidly, with an acute onset. So, before the age of 11, I was not considered diabetic at all. For reasons yet unknown, something triggers an immune attack on your insulin making cells one day, and then you become Type 1 diabetic. So, up until a few months before my diagnosis, I was non-diabetic, and as healthy as can be.

    But, when I started to develop symptoms, they were extreme thirst, having to pee all the time, extreme fatigue, extreme hunger, and bad/fruity smelling breath. All classic signs of Type 1.

  4. I think you were at something like 600 when they diagnosed you. Scary times. I can't believe we stayed as calm as we did. Maybe because the dietary stuff didn't scare us, maybe because your dad was always so calm about stuff. Maybe we were too busy taking it all in to be projecting the scared part! I'm grateful we were living in the right place at the right time. I'm grateful for the diabetes camp line. It saved all of us! Plus, you were just a very brave little girl!

  5. The Mercers-
    Hey, I'm so glad you're reading the blog! Oh man, the camp blog is going to be so fun!

  6. There were a few times when I think your pancreas was pooping out. There was that time at Nettie's when you had the "flu" but never really threw up and you showed many of the signs that week. We just didnt' pick up on it. Even Mike, Nettie's PA husband didn't figure it out.

    Just sayin'.