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Worst patient ever

October 4, 2010

Last week, I came home to a large white envelope sitting on our doorstep. I looked at the mailing label, which had my full legal name. Whoa, I thought, this must be important. The return address confirmed it: Rady Children’s Hospital in San Diego.

My medical records from diagnosis through high school were in this envelope.

Requesting my records had always been at the back of my mind, but I was never sure that they were still there (since a lot of hospitals destroy old patient records after 7 years or so). Finally, Chris urged me to get them, saying it couldn’t hurt to try– but he also said, “But don’t get your hopes up, just in case they’re gone.” I called Children’s Hospital and talked to a cheerful lady in the Records department. Imagine my excitement when she said, “We don’t destroy records.” HOLY SMOKES!

So now, here they are, after having traveled across the country. It’s a thick packet, about 100 pages, of my [very bumpy] journey with type 1 diabetes. There were things in there I already knew (such as my bg at diagnosis: 327), but the things that interested me the most were the clinic notes.

Those were really hard to read. I saw myself go from a totally compliant 9-year-old girl to a monstrous teenager who didn’t give a shit about good control. Hey, other teens did drugs, drank at parties, had unprotected sex…me, I fudged my blood sugars. I keep telling myself it could have been worse. :P

I found all my lab values and made a timeline:

07/08/1993 – 14.8 (a little over a month after diagnosis; I have no record of getting an A1c taken at diagnosis, so this is the closest one)
02/24/1994 – 11.8
05/19/1994 – 7.5
08/11/1994 – 8.9
09/15/1995 – 7.6
12/14/1995 – 8.5
05/24/1996 – 8.3
08/30/1996 – 7.8
11/22/1996 – 7.9
02/28/1997 – 8.3
09/19/1997 – 6.5
01/30/1998 – 6.4
08/07/1998 – 7.7
04/23/1999 – 9.9
08/27/1999 – 8.2
03/17/2000 – 9.8
06/09/2000 – 9.4
10/27/2000 – 11.8
06/01/2001 – 9.9

Seriously, WTF was I thinking? 11.8?! I fluctuated so much during my teen years…maybe it was a reflection of my raging hormones?

And on the WTF front, I thought I was being so slick testing a billion times the nights before my endo’s appointments, changing the date and time on my meter with each test (Mom and Dad, if you’re reading this…remember, I was 16!!!). I wasn’t fooling anybody: “She certainly has a marked discrepancy between her home glucose testing and her A1c values. What is quite remarkable in looking at her home glucose values is that there is very little deviation of her glucose readings around the average value at any particular time of day. This is quite unusual to see such a small spread between the highest and lowest numbers even on someone who is taking multiple daily injections. I would be a little suspect as to the validity of all these measurements.” AY!

My other favorite comment was: “We do not have any log books today, as Faye reports that she ran out of log books since it has been such a long time since her last visit.” Right, because I couldn’t buy a notebook myself, or even better, use a piece of paper?

Perhaps one comment that kind of struck me as weird (now, at least) was from the dietitian. I remember not being too fond of her; I guess the feeling was mutual: “She has had difficulty with compliance issues and is not maintaining as tight a control as we know she is capable of.” It’s funny because now, I think I’m pretty compliant, and working harder to get my A1c as low and stable as possible.

It was interesting looking back at the first 8 years of being diabetic. Even though Chris was the one who encouraged me to get my records, I’m a little hesitant to let him read them…I’m ashamed at what the last few years held. He said, “It’s okay. You were a teenager. The important thing is that you realized the importance of good control, and you’re doing a good job now.” :) I was glad he said that, because honestly, I was starting to feel like I was the worst patient ever at Children’s Hospital!

To end this post, here’s a picture of me at my First Communion, about a month before I was diagnosed (also the skinniest I’ve ever been in my life):

7 comments

  1. I would so not call you the worst patient ever! I did the same thing. I think most people diagnosed as kids go through diabetes rebellion just like you’ve documented here- because hell, it’s better than drinking/smoking/having crazy, wild, unprotected sex (looking back, I realize that it is not better, just different… but you obviously know what I mean).


  2. If you were the worst patient ever, than so was I. I haven’t seen any of my old records but they would most likely say very similar things. I had more 10+ a1c’s than I like to admit. But that hubby of yours is smart .. it doesn’t help us to look back + regret what we did or didn’t do. What’s most important is what you’re doing now. So don’t beat yourself up too much. Especially because you weren’t alone!


  3. There’s good numbers in there too! I saw them ;)

    Thanks for sharing- funny thing is that I always thought my A1C’s were pretty good, but when I looked back over my medical files from when I was a kid they were not so great either for the first while. I was diagnosed when I was 15. Bad A1C’s happen during those years.

    Glad you’re doing well now :)


  4. I can’t even imagine having to deal with diabetes while being a teenager. I’m fortunate that I wasn’t diagnosed until I was an adult who also happens to be a control freak :)

    It’s hard not to, but we can’t beat ourselves up about the past. It just makes us feel guilty, which can’t help things now. Just think about how far you’ve come!


  5. Do not be ashamed of these notes at all. I think this is a great glimpse into just how hard it is to switch gears and become a perfect diabetic overnight, which is what everyone seems to expect. The reality is that it is extremely hard, and there is no such thing as a perfect diabetic. As we all know, even the best control can yield imperfect results. You got to where you are today, and that is what matters most.

    Thank you for sharing!


    • Cut yourself some slack! What teenager does anything an adult tells them to? I’m pretty sure my records would look similar. I actually think that physicians understand the emotional roller coaster of living with diabetes more now than they did back then. If they had, I think they would have approached teenagers differently. Don’t feel bad! There is enough guilt with this disease already.


  6. Wow, really interesting look back at all your records, especially with the comments attached.

    I’ve always wondered what my doctors write in their notes on my records, but decided I’d be happier not knowing. Haha.

    Interesting how we change as we grow up, eh?



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