Every now and then I go to the library's online catalogue and I search "diabetes biography". This brings up about 20 books, including biographies of ten people (nine diabetic): Mary Tyler Moore, Frederick Banting, Ron Santo, Deb Butterfield, Zippora Karz, Nicole Johnson, Denise Bradley, Andie Dominick, Lisa Roney, and Elizabeth Hughes.
Now, all nine of these people were diagnosed long before I was, but Elizabeth Hughes was diagnosed long before anybody reading this blog was. Elizabeth Hughes was diagnosed with diabetes in 1919, when she was eleven years old. In 1919, you couldn't get a prescription for insulin. You couldn't get in a research trial and be given insulin. In fact, you plain old couldn't get insulin, unless you made it with your own damn pancreas.
Which is what she did. Using the method of eating until you peed sugar, then not eating until you didn't, she lived on the insulin she made herself, growing smaller and smaller, weaker and weaker, until she went on insulin in 1922.
I checked out The Fight to Survive: A Young Girl, Diabetes, and the Discovery of Insulin by Caroline Cox a week ago and read it through pretty quickly. I wanted to read a book about diabetes that was different. I wanted a book to make me want to celebrate injectable insulin (four years, whoop!). I wanted a book that wasn't about a celebrity or a role model.
This book is about a celebrity though; just not a celebrity of of the twenty first century. Elizabeth Hughes's father ran for president on the Republican ticket and was also a supreme court judge. During the years of her illness, her family was rich enough to hire a personal nurse for her, and they sent her to Toronto to go on insulin. And while this book doesn't really attempt inspiration, particularly not "living with diabetes inspiration", it is an attempt to understand how a preteen and teenage girl starved herself despite not being anorexic. How she managed to enjoy life in some sense at that time.
But I liked it. I liked the way that this book talks about the discoverers of insulin. Their story is told in little snippets parallel to Elizabeth's and while at first it was losing me in biographical detail, soon the details (juicy!) had me taking notes. Did you know that Banting was alcoholic? Did you know that after producing insulin and injecting it in a few patients, they had to stop because they didn't remember how to make more? And I liked Elizabeth herself, despite the fact that her experience did not have much to do with mine, as she didn't really have a lot of diabetes symptoms other than sugar in her urine. This book is really only about those years which she later wanted to forget (I can imagine wanting to put starvation behind you!). I didn't like the bits in which Cox attempts to look at the current diabetes situation, and I believe that her mortality statistics contradict what I read elsewhere. But that's not the book.
This is a book about living with diabetes without insulin. This is a book about heroes who did not behave heroically. I recommend this book because it will challenge your ideas of the history of diabetes.
Pages
Tuesday, August 31, 2010
Sunday, August 29, 2010
On Thursday I visited the endo, and got weighed and had blood drawn and talked and had my feet checked (still having problems feeling vibrations). My weight is 101 lb, which represents no real change over the summer. My vitamin B12 level (which I had drawn because I am a vegan) was in the mid normal range. My vitamin D came down from 97 to 32.6; I suppose we can retest in a few months. The celiac stuff was all normal. The A1c came in at 6.6%. I decided to look at my A1c history. Here it is in a graph: http://nces.ed.gov/nceskids/createagraph/default.aspx?ID=43046429fea34dd08eb29bc32c254686
FedEx says my Dexcom is currently in Memphis. I am impatiently awaiting its arrival!
FedEx says my Dexcom is currently in Memphis. I am impatiently awaiting its arrival!
Monday, August 23, 2010
August is Hard
I'm going to buy a dexcom OOP. My TSH was 0.6 a month ago. I see the endo Thursday.
I was diagnosed with diabetes on September 1, 2006.
Every summer I remember the summer of 2006. I started a new journal on August 1st. I didn't write a whole lot, but what I did write brings back memories.
Here's an approximation and comments on what it says. Comments from now in red:
August 1: Peeing blood. Little brother's birthday.
August 2: Peeing blood, homework due, talked to rabbi who says that they're going to open a kosher restaurant in Lakeview. I want a hat that says "This IS my Kippa." Tisha B'Av Starts Sundown.
August 3: Peeing blood. Tisha B'av. Difficult fast- racing heart dry eyes. I'm great at fasting generally, but I remember this one as the most scary fast of my life. I couldn't get up out my chair unassisted at the end of the day.
August 4: Met with Ehtan, volunteered at Sulzer.
August 5: Shabbes services at new synagogue go to fellowship room/ north entrance. I remember having tremendous difficulty walking home. I sat down and had a hard time getting up.
August 6: Leave for Nashville. Got stopped in Terre Haute. This was a road trip with my family and I was really really short tempered in Terre Haute. The walk to the service station was really hard for me.
August 7: Grandfather's birthday, power point assignment due, read Still Me by Christopher Reeve. My grandfather had a birthday dinner and everybody else seemed satisfied by the serving sizes but not me- I was famished!
August 8: Went to Nashville's 9 Planet's and Counting. I went and sat in the family bathroom, locked the door, turned off the lights and rocked in the rocking chair. I was so tired and so wound up.
August 9: nothing written
August 10: Got home at 2200 hours. The trip home was terrible. I couldn't hold in my pee between rest stops and so I peed in all the water bottles we had, with a towel because when I started my accuracy wasn't so great. I tried to stop drinking water, I really did, but it was SOOOO hard. I thought my parents were pretty mean when they didn't stop to let me pee.
August 11: Anat's birthday. Class final. Met with assistant dean of students to ask for a map of bathrooms on campus.
August 13: Party at work. Bought chocolate soymilk from ALDI's. I wrote a poem about the soymilk- I finished the quart within a block of the ALDI's. Walked 9 blocks. I thought I was maybe weak from not having exercised enough and from this day on I recorded how much I walked every day.
August 14: Walked 6 blocks, then 3 more blocks. Babysat upstairs. Yvette's brithday. SO lethargic. My heart pounds painfully at even a slow walk. <- I wrote this in the backward script I use to prevent anybody reading over my shoulder.
August 15: Walked 6 blocks, then 13 blocks, then 11 blocks, then 10 blocks, then 3 blocks, then 24 blocks, total 67 blocks. Went to work from 1000 hours to 1600 hours, went to book discussion, lost a key.
August 16: Walked 1 block, then 1 more block, total 2 blocks. Last day of classes. Went to support group, used my bus cards.
August 17: Walked 5 blocks. Call ACLU.
August 18: Walked 24 blocks, went to Volunteer party. Threw up watermelon. I actually was extremely upset about this party. I had looked forward to it for a long time because of the food mostly, but it all tasted wrong, and then I threw up three times during the games, and couldn't play.
August 19: Walked 9 blocks, 9 more blocks, 67 blocks, 2 blocks, 5 blocks, and 24 blocks for a total of 126 blocks. Went to synagogue, played frisbee with Danny. Windy. I remember this frisbee game because I couldn't see the frisbee.
August 20: Walked 5 blocks, 1 block, plus 1 block, total 7 blocks. Won a game of hexic (a video game).
August 21: Walked 17 blocks plus 24 blocks, total 41 blocks The one-way distance to the library. Book discussion at Lincoln Belmont Library. Somebody called about me babysitting.
August 22: Walked 6 +13 +2 +6 +5= total 32 blocks. Went to work for five hours twenty minutes.
August 23: Walked 2+12+2+1= total 17 blocks. Saw therapist. Went to support group. Got a list of nongendered bathrooms. Played apples to apples. Woke up at 3 AM peeing on my self. Was wearing shorts.
August 24: Walked 1 block. Got a letter in the mail from friend. Side walk chalk with little brother. Threw up. Then took a nap.
August 25: Walked 8 blocks. Took a picture. Doctor won't see me. I had had an internist who decided she was not willing to see younger patients anymore.
August 26: 7 +41 +32 +17 + 1 + 8= 106 blocks
August 27: 10 +3 +8 +1 = 22 blocks. Went to GRASP meeting in Park Ridge, read When a Gene Makes You Smell Like a Fish. I remember peeing three times during the meeting, and falling down on my way home and wanting to stay there, the Herculean effort it took to get up and finish my walk.
August 28: Walked 3 blocks. Woke up half past noon. Stargirl book discussion. Threw up at Lincoln Belmont Library.
August 29: 13 + 2 +1 = 16 blocks. Worked almost 6 hours. Submitted bill. Friend in California will call Thursday.
August 30: Walked 4 blocks. [Address of penpal].
August 31: 4 +4 = 8 blocks. Mailed letter.
September 1: 3 +7 blocks. 2:45 Dr apt. 425 blood sugar level.
I was diagnosed with diabetes on September 1, 2006.
Every summer I remember the summer of 2006. I started a new journal on August 1st. I didn't write a whole lot, but what I did write brings back memories.
Here's an approximation and comments on what it says. Comments from now in red:
August 1: Peeing blood. Little brother's birthday.
August 2: Peeing blood, homework due, talked to rabbi who says that they're going to open a kosher restaurant in Lakeview. I want a hat that says "This IS my Kippa." Tisha B'Av Starts Sundown.
August 3: Peeing blood. Tisha B'av. Difficult fast- racing heart dry eyes. I'm great at fasting generally, but I remember this one as the most scary fast of my life. I couldn't get up out my chair unassisted at the end of the day.
August 4: Met with Ehtan, volunteered at Sulzer.
August 5: Shabbes services at new synagogue go to fellowship room/ north entrance. I remember having tremendous difficulty walking home. I sat down and had a hard time getting up.
August 6: Leave for Nashville. Got stopped in Terre Haute. This was a road trip with my family and I was really really short tempered in Terre Haute. The walk to the service station was really hard for me.
August 7: Grandfather's birthday, power point assignment due, read Still Me by Christopher Reeve. My grandfather had a birthday dinner and everybody else seemed satisfied by the serving sizes but not me- I was famished!
August 8: Went to Nashville's 9 Planet's and Counting. I went and sat in the family bathroom, locked the door, turned off the lights and rocked in the rocking chair. I was so tired and so wound up.
August 9: nothing written
August 10: Got home at 2200 hours. The trip home was terrible. I couldn't hold in my pee between rest stops and so I peed in all the water bottles we had, with a towel because when I started my accuracy wasn't so great. I tried to stop drinking water, I really did, but it was SOOOO hard. I thought my parents were pretty mean when they didn't stop to let me pee.
August 11: Anat's birthday. Class final. Met with assistant dean of students to ask for a map of bathrooms on campus.
August 13: Party at work. Bought chocolate soymilk from ALDI's. I wrote a poem about the soymilk- I finished the quart within a block of the ALDI's. Walked 9 blocks. I thought I was maybe weak from not having exercised enough and from this day on I recorded how much I walked every day.
August 14: Walked 6 blocks, then 3 more blocks. Babysat upstairs. Yvette's brithday. SO lethargic. My heart pounds painfully at even a slow walk. <- I wrote this in the backward script I use to prevent anybody reading over my shoulder.
August 15: Walked 6 blocks, then 13 blocks, then 11 blocks, then 10 blocks, then 3 blocks, then 24 blocks, total 67 blocks. Went to work from 1000 hours to 1600 hours, went to book discussion, lost a key.
August 16: Walked 1 block, then 1 more block, total 2 blocks. Last day of classes. Went to support group, used my bus cards.
August 17: Walked 5 blocks. Call ACLU.
August 18: Walked 24 blocks, went to Volunteer party. Threw up watermelon. I actually was extremely upset about this party. I had looked forward to it for a long time because of the food mostly, but it all tasted wrong, and then I threw up three times during the games, and couldn't play.
August 19: Walked 9 blocks, 9 more blocks, 67 blocks, 2 blocks, 5 blocks, and 24 blocks for a total of 126 blocks. Went to synagogue, played frisbee with Danny. Windy. I remember this frisbee game because I couldn't see the frisbee.
August 20: Walked 5 blocks, 1 block, plus 1 block, total 7 blocks. Won a game of hexic (a video game).
August 21: Walked 17 blocks plus 24 blocks, total 41 blocks The one-way distance to the library. Book discussion at Lincoln Belmont Library. Somebody called about me babysitting.
August 22: Walked 6 +13 +2 +6 +5= total 32 blocks. Went to work for five hours twenty minutes.
August 23: Walked 2+12+2+1= total 17 blocks. Saw therapist. Went to support group. Got a list of nongendered bathrooms. Played apples to apples. Woke up at 3 AM peeing on my self. Was wearing shorts.
August 24: Walked 1 block. Got a letter in the mail from friend. Side walk chalk with little brother. Threw up. Then took a nap.
August 25: Walked 8 blocks. Took a picture. Doctor won't see me. I had had an internist who decided she was not willing to see younger patients anymore.
August 26: 7 +41 +32 +17 + 1 + 8= 106 blocks
August 27: 10 +3 +8 +1 = 22 blocks. Went to GRASP meeting in Park Ridge, read When a Gene Makes You Smell Like a Fish. I remember peeing three times during the meeting, and falling down on my way home and wanting to stay there, the Herculean effort it took to get up and finish my walk.
August 28: Walked 3 blocks. Woke up half past noon. Stargirl book discussion. Threw up at Lincoln Belmont Library.
August 29: 13 + 2 +1 = 16 blocks. Worked almost 6 hours. Submitted bill. Friend in California will call Thursday.
August 30: Walked 4 blocks. [Address of penpal].
August 31: 4 +4 = 8 blocks. Mailed letter.
September 1: 3 +7 blocks. 2:45 Dr apt. 425 blood sugar level.
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