The Tweens, Via USPS
* Just a reminder that I’m donating money to two of my favorite diabetes organizations, Behavioral Diabetes Institute for every comment I receive this month, and Diabetes Hands Foundation for every click I get on November 14th, World Diabetes Day.
Kelly posted earlier today about her mission to get her medical records from Children’s Hospital of Philadelphia in order to get her Joslin certificate, and it reminded me that I’ve been wanting to post about some of my old records I received recently as part of my own quest to fill in the gaps of what I remember from life with diabetes many years ago.
I was initially frustrated that I couldn’t get records from the small community hospital to which I was admitted at diagnosis. In lieu of actual chart documentation with lab results and real information, I had hoped to get verification that I was there, along with maybe a diagnosis, but they couldn’t even verify that I had been there. That was a real punch-in-the-gut, and kind of still is, but there’s nothing to be done about it.
Time Capsule Via USPS
Since that was a brick wall, I had to get creative, which luckily, isn’t beyond my range of abilities. I contacted Camp Sweeney, requesting whatever records they might have, and I received those a few weeks ago, which I shared with you. While I was waiting to see what they might send though, I had the brainstorm to track down records from the University of Texas Medical Branch in Galveston, Texas. This is where I had been a patient of Dr. Luther Travis, the first endocrinologist I saw, and the last doctor to treat my diabetes before my mom got a job transfer and we moved from Houston to Philadelphia in the spring of 1985. Dr. Travis was author of the children’s book about diabetes that all campers received at Camp Sweeney every summer. I used to have several copies, and now I don’t have any which makes me sad. I’ve tried to track down a copy, but haven’t had any luck. As usual, my propensity to discard anything and everything diabetes-related from my life when I was younger has thwarted me yet again.
I went to the UTMB website to see what I needed to do to get records. I called, they faxed me the document I needed to complete, and I faxed that document back. Then I waited. A couple of weeks later, I received a fat envelope in the mail. It was clearly not a letter telling me I didn’t exist. I nervously opened it, knowing that it held the contents I wanted, but wondering just what kind of information I would find. Reading the first page, the office consultation summary, flipping through and seeing the lab results including BG readings, the A1c’s, the qualitative assessments of my control, “fair to good control”, “excellent control”, the NPH and Regular insulins regimen. It’s a glimpse at the girl who was all of 5’ tall (I’m 5’7” now) and weighed 93 pounds on her last visit to see Dr. Travis, the girl who had only had diabetes for 6 short years, had recently moved and started middle school, and was, unbeknownst to her, about to move halfway across the country.
One thing that was of great interest to me was the doctor’s assessment of how my mom and I divided my diabetes responsibilities. My mom ordered new insulin, treated ketosis, and ordered new supplies. We both planned activities. I rotated my shots (I will die repeating the matra, “rotate, rotate, rotate”), changed my diet, checked my sugar, gave my insulin, treated hypoglycemia, selected meals, drew up my insulin, changed my insulin dose, planned my diet, and I was the one “Mostly ‘In Charge’ of Diabetes”. Although, notice I was only checking my BG about twice a week, “when she feels bad or mom nags”. Surely, a glimpse of things to come, and a sign that although I was only 11 years old, I was barreling toward adolescence.
Very shortly thereafter, I did get my first meter, and that inspired me to increase how often I was checking my BG, but new toys only seem novel and interesting for so long. I’ve actually developed some rather opinionated ideas about divvying up diabetes responsibilities between kids and parents, partly based on my own experience, partly from the experiences of others I’ve known, and partly from reading research on diabetes in adolescents. Looking over my records reinforced my belief that most families give their kids too much diabetes responsibility too soon. However, back then, no one knew any better because people hadn’t been managing diabetes with MDI or BG testing for all that long. Seeing my family’s way of doing things though, knowing we were doing the best we knew how to do it, knowing that no one else knew better enough to advise us differently, knowing the groundwork that was being laid for me to undo everything, really affected me, bringing tears to my eyes, and giving me lots to think about.
I can understand how it would put a smile on your face. And I’m thankful you have...
Gosh, I wish I could get my records. When I arrived at Children’s Hospital in Washington DC the morning of Sept 20, 1967, I was told by the receptionist there I had diabetes. My parents claimed they didn’t know prior to that either. It still bothers me.
Comment by Marie — November 6, 2009 @ 4:19 pm
HI – I have been reading your blog for awhile and wanted to comment today. I have a 11 year-old daughter who was dx in june this year. I would love to hear your thoughts on how much responsibility we should give her. I am worried that I am not having her take enough sometimes – but she does not want to take it all on either and would probably let me do it all for her forever, or at least until she is a teenager. She checks her own BG at school, but not unless I ask her to at home. She treats her own lows at school and does a fantastic job. At home she’ll tell me she feels hungry all of a sudden and we check and treat together. I do all her shots and she has no and I mean NO interest in doing it herself. She will be going on a pump in the beginning of Dec – which she pushed for once she realized it cut down on the shot like activity and she could eat a snack without a shot if she wanted to. I was planning on getting her to start counting her carbs so she could start bolusing herself if there was a party at school – is that too much? Should I let her take the lead? I have a feeling the endo will start wanting her to do some of this pretty soon.
Comment by Jill — November 6, 2009 @ 4:24 pm
Hi!
http://www.amazon.com/Instructional-Aid-Insulin-Dependent-Diabetes/dp/B0012KB34E/ref=sr_1_8?ie=UTF8&s=books&qid=1257543734&sr=1-8
Comment by Brett — November 6, 2009 @ 4:51 pm
Wow! How very nice you were able to find your records. They’re really interesting to read. Must’ve brought back so many memories.
Comment by Colleen — November 6, 2009 @ 5:12 pm
This stuff is very cool. I’m going back to KC where I was diagnosed next weekend. I think I’ll get copies of my records then, and put them on file.
Comment by sajabla — November 6, 2009 @ 5:22 pm
Very cool…and for a mom like me…very scary to think you only needed to test 2x a week. :O I often think testing as often as I do, I have too much information and a cgm would just make my brain explode. But as my son J starts Jr. High I see a CGM someday in his future…to give his mom some peace of mind, and if nothing else to give him freedom without me breathing down his back all the time.
Comment by Meri — November 6, 2009 @ 6:24 pm
I can’t get my records because I was at a military hospital that has long since closed. I think I will follow your lead and contact the camp I went to 8 months after I was diagnosed and see if they still have records. It is so hard for me to believe that soon I also will be at the 25 year mark and I am still here! I remember the old accuchecks, that was my first glucometer, LOL! I was told to test 2x a day max since the Army paid for my strips. Wow, the old days were something else!
Comment by suzanne — November 6, 2009 @ 9:08 pm
Very cool. As cool as seeing the diabetes stuff can be, of course.
G is lucky that his childhood/diagnosing endo is still a good friend of his parents (and was before he was diagnosed with T1), so if he wanted his records, it would probably be rather easy.
Comment by Rachel — November 6, 2009 @ 9:23 pm
Between you and Kelly, I am getting curious. I have my Pediatrician’s paperwork but I believe there may be a local hospital (labs) record and the Boston Joslin record somewhere, has to be.
Weird to think back, recall what it was like, how far we have come.
Glad you got all this paperwork though. Thanks for sharing.
Comment by Crystal — November 6, 2009 @ 10:51 pm
Good to see screen prints of all your records.. I’m gonna search for mine now and back track them..
Comment by Diabetes Management — November 7, 2009 @ 12:27 pm
How neat! I found it pretty emotional when I got all my records not too long ago. Did this drum up anything unexpected in you?
Comment by Scott K. Johnson — November 8, 2009 @ 11:23 am
YOU DID IT! And have given me hope in the process~
Comment by k2 — November 9, 2009 @ 4:32 pm