Friday, January 20, 2012

True Life: I have no idea how I got here

I'm not a stranger to blogging, but previously I have always kept my entries private. It was sort of my way of letting go of emotional drama and build up but not having to burden anyone else with it. I have never categorized myself as a "sharer." It's been a major downfall of most of my relationships to date, actually. Always been more of a listener. But last year, an opportunity presented itself and I don't know what made me do it, but I took the chance.

I was sitting on my couch with my friend Sandra, watching Jersey Shore. We have always joked about how interesting we are (we're not), and how much people would love to follow us for a day (they wouldn't). It was one of those stupid best friend moments where you just talk to hear your own voice. But I went to MTV's website to look for "Real World" auditions, and came across a casting call for a True Life episode around People with Diabetes.

I felt like the universe was telling me something at that point. It sounds cliche and stupid but I had never, ever confronted my diabetes from a public standpoint. My friends only knew because they asked about my "pager" in my back pocket. It's never been something I shared openly with people... even my family! But I sent in the required photos, identifying facts, and my story. I got a call a few days later from a researcher, then another call from a producer, and then somehow, a few weeks later, there they were at my apartment with cameras. It happened really quickly, and I really didn't think I was ready for it.

When I told my parents about the show, they didn't understand. "Are they paying you?" No -- they didn't pay me. It was a voluntary documentary. But my hope was this -- that maybe by finally talking about living with diabetes -- or, rather, pleasantly ignoring my diabetes -- I'd be prompted to take better care of myself. That really wasn't how it worked out, at least not yet, but I'm finding that the response to the show is actually far more eye opening than the filming itself.

The filming was, politely put, inconvenient. People didn't really ask about what we were filming when we were in public. They avoided you like you were some leper carrying a contagion just on the cusp of eliminating all of humanity. But I found solace in venting to the producers, who were used to it. If you watched the episode, you saw me cry like 6 times -- but only the producers and I know (well... and now, you) that there is enough sobbing footage to make a feature film. I didn't like having to talk about living with diabetes, because I wasn't sure how comfortable I was with just living with myself, period.

But, like I said, the response to the show has actually been the best part of it all. I found out that there is an entire world of intelligent bloggers, tweeters, advocates, and supporters who are all on the inside. They understand. They know what it's like. And I might not be able to articulate what it's been like for me yet, but I think I'm learning. I don't hope to be an internet sensation, a famous blogger, or a reality TV star... I kind of just hope that I can connect with some people who might finally understand what I'm talking about or how I'm feeling. And then, maybe one day, be able to give the same feeling back to some other person who felt like I did before finding out about this world of support.

This blog could go on forever. Instead, I think I'll post the casting email I sent MTV. This is the first time I've re-read it since I sent it, and it is KINDA dramatic. Okay, I lied. It's REALLY dramatic. But every inch of it is true. My story that developed during filming had an organic start... I really didn't think they cared so much about the draining financial aspect as others, but it turns out that's actually a really big part of my story.

Diabetes is the only thing about me that makes me different from the average 25 year old... and I hate that. I have never wanted this disease to define me, to determine what I can and cannot do. I was going to live WITH diabetes, it wasn't going to run my life. But, 14 years after my original diagnosis, the tables have turned so dramatically that I can't believe it.

I was diagnosed with type I, insulin dependent diabetes on March 14, 1997, just three days after my 11th birthday. The story about how I found out is interesting -- at least that's what every doctor tells me. I didn't fall drastically ill and have to be admitted to the hospital. Instead, my 5th grade teach prompted us to do an extra credit report on a topic of our choice... and mine just happened to be Diabetes. As I sat in my room going through the encyclopedia, reading the list of symptoms, I panicked. Excessive thirst -- I often filled a Big Gulp cup to the very brim with water and would drink it in two gulps, just to refill it minutes later. Frequent urination -- while watching my favorite television shows, I often had to go to the bathroom at every commerical break. Weight loss -- I had dropped almost 20 pounds and could wrap my hand around my ankle. Increased appetite -- despite my weight loss, I was eating more than ever (something my parents wrote off as part of my growth spurt). All of them fit. I went to my Mom, and told her what I thought. She brushed me off and told me that I was overreacting. I went to my Dad next (my parents divorced when I was 4 years old) and he listened enough to talk to my Mom.

The next day, I cried in the doctor's office as I watched a ketone strip turn from white to bright purple. Hours later, I was admitted to the hospital.

Initially, Diabetes did not seem that bad. I was pretty disciplined at testing my blood sugars, counting my carbs, and staying on track. I was 11. I didn't have a rebellious bone in my body. I had a "honeymoon" period where my body required very little insulin to stay regulated, for an extended period of time. My doctor's said it was abnormal that it lasted that long, but weren't worried -- it wasn't a bad thing. So, two years went by and then I made it to middle school, where I was getting more freedom from my parents.

Things didn't really go downhill until high school. The first time I remember getting really sick, was when I had ketoacidosis in my Sophomore year of High School. I hadn't been taking my insulin regularly for months at this point, generally only injecting fast acting insulin one time a day in a large dose (usually 15-20 units), which was extremely dangerous and not helpful at all to my health. I went to softball tournament and was so dizzy and dehydrated that I couldn't play. My coaches fed me gatorade (loaded with sugar, which made the problem worse), and then I went home. My parents were out of town for the weekend, so I decided, like any teenager would, to invite my friends over to the house. My friends smoked pot in the backyard while I drank slurpees and watched movies on the floor. Several people spent the night and I woke up so sick that I could barely move. I was throwing up non-stop. My best friend Brianne helped kick everyone out of the house while I called my Aunt to take me to the hospital. When I arrived, I was admitted immediately. I don't remember much after that, except for the feeling of my mouth being as dry as sandpaper. The nurses were instructed to not feed me anything, even water, until my blood sugar was stable. But I was so desperate for water that I went into the bathroom and drank from the sink.

The doctor told me that day if I had waited one more day to come to the hospital, I'd be in a coma... or dead.

But that didn't scare me enough to make me take care of myself. This was 8 years ago, and now I have better control... but the things I want to do in life are so drastically out of line with the things I need to do to take care of my diabetes. I'm 25 and I missed out on a lot of partying. My friends don't carry a blood sugar meter around every where they go... so I stopped doing it, too. I've even been asked if it's contagious. When I get into a serious relationship (and that happens so rarely), I have to have the conversation about it. People joke about my "gameboy" or my "pager," when they see my insulin pump. And yeah, it's all fun and games... but this is what I live with every day. I go to doctor's appointments every three months ... if my insurance pays for it. Then my insurance decides to change its coverage, and I have to pick a new doctor. Or I switch jobs and find a new doctor. In the past 6 years, I have never seen an endocrinologist regularly. The most I've seen a doctor since I was being cared for by a pediatrician was in a period of 2 months. My friends and peers are lucky that they rarely have to see a doctor, if ever.

After my first bout with ketoacidosis (there was a second one my Junior year in high school, when I was on a Cheerleading trip to Florida), I realized that I could manipulate my insulin to lose weight. High blood sugars caused more ketones in my urine, which essentially meant I was passing all my calories out through my urine, rather than retaining them for nutrients. I lost enough weight to really notice what I was doing. But that had to stop after I almost died the second time... and subsequently, I had a massive period of weight gain.

So now I'm here, 25 years old, working 80 hours a week, struggling to manage a disease that will never leave my life. I am getting to the point where I'm worried about when I am going to get married, when I'm going to have kids... but diabetes puts everything on hold because at this point, I can't even sure I'll be healthy enough in one year to get married. My body may be so damaged from everything I've done to it that I could never have kids. I'm desperate for an intervention. I need a complete restructure to get back on track. I've had the same insulin pump for 6 years, and my health insurance just told me if I wanted to get a new one, it would cost me $1,000.00 dollars. What other person do you know that has to pay to survive? It makes me sick and sad to think that if I want to continue to live, I have to PAY for it. My basic human right of freedom has been taken away by a disease that I never chose to have. I didn't give myself this disease. Yet I pay for it every day.

There's much more to my story than can be explained in an email. But I think that this opportunity is very important for me to show other peers what NOT do to, and what your life can become like if you let it go. When I clicked on the MTV casting link, before I even saw what True Life was looking for, I had said in my mind, I wonder if they'll ever do an episode on Diabetes. And the page refreshed and had it right in front of my eyes.... it has to be destined to be!


  1. Welcome to the world of Diabetes Blogging, and to the Diabetes Online Community! Look forward to reading more of your story.

  2. Wow Krysten, powerful. My stomach just dropped to the floor when you talked about your honeymoon period because it sounds so much like my daughter. Sarah was 10 when she was diagnosed. It's been almost two years and she's still in a strong honeymoon. I feel for you. :-(

  3. WAHOO! So cool to see you in the blogging realm!

    I'm oldest daughter was dx in 2005, at the age of 24 months and celiac in 2008. (I also have celiac.)

    I love connecting with others who understand what this journey is like. Loved seeing T1 represented on MTV, and THRILLED you found the DOC!

    So happy our paths have crossed and I'm looking forward to sharing the journey ahead!

    PS -- I'd like to ask a question...can you email me?

  4. Just went back to re-read...tears. So powerful. This part:

    "My body may be so damaged from everything I've done to it that I could never have kids. I'm desperate for an intervention. I need a complete restructure to get back on track."

    Stabs at my heart. In it I read fear, guilt, and an overwhelmed longing for brighter days ahead.

    One day my little girl is going to grow up. Thanks, to social media I have the unique opportunity to peek inside adult PWD worlds, and I cannot help but to wonder what her journey will look like.

    I need this kind of raw transparency. I need to know the nitty gritty, so I can figure out how best to support her...or back off, if that's what she needs.

    I'm so glad you wrote that submission.

    And I pray you find those brighter days ahead.

  5. kristyn-

    i am SO HAPPY you found us! we do understand. that's the magical thing about the diabetes online community. you don't have to explain anything. people just get it. because we've been there too.

    the DOC has completely changed my life. i love what you said: "And then, maybe one day, be able to give the same feeling back to some other person who felt like I did before finding out about this world of support."

    ditto. and you WILL do this. this blog will reach people and help them in ways you will never know. thank you for sharing, and i'm happy to have you as a part of our community. <3

  6. Kristyn: Thank you SO MUCH for taking that chance, reaching out and agreeing to talk so publicly about your own D-Life. And then for connecting with the DOC and starting this blog. Like Jess and others have said, this community has been life-changing and is an incredible resource of support, advocacy, accountability, and friendship. These "real stories" that we all share reflect the good and bad and everything in between. I learn so much about myself just by writing, being able to get my own thoughts and feelings in order but also keep tabs on what I'm doing. Looking forward to reading more and seeing you around the ever-expanding Diabetes Online Community!

  7. loved the show~ you were the best! I wondered if you ever heard of the bdi group in sandiego, maybe i'll catch you in one of there classes sometime? Besides that it was surreal knowing another diabetic lives so close to me! Wish you well! Gotta connect on some time to!

  8. Hi Honey, love the blog and I watched the show with nervous anticipation, as usual I am proud of you. It is harder to read your words than watch them happen. I have been a fan forever :). As I read many emotions come to the surface you and I are alike in so many ways, too bad for you hehe. I remember the day you came up to me at the baseball field my beautiful little 11 year old girl and said Dad I have diabetes... As I stood there thinking what the hell is she talking about it all hit me, my stomach sank and I knew you were right. I remember my wife standing next to me with the what did she just say look on her face but as much as I did not want to believe it I knew it was true. I remember telling your mom and then having to make her take you to the doctor she did not want to believe it and was scared because inside she knew it as well. Weird how that all works.
    I am so glad to see you writing it is one of your many talents, the book offer still stands I hope you take me up on it. I will tell you this you have a disease but you are not the disease. What you are is , awesome,hyper smart, beautiful, great sister, great daughter, accomplished student, great leader and just beginning to make your mark on the world that has been so difficult for you. You get knocked down but always get up, your down but not out and you always, I mean always seem to come out stronger than you went in. I am so proud of you and can't wait to see what the next amazing thing you do will be.

    Love Dad

  9. So glad you found the DOC and thanks for transparency in your post.