Joslin Blog Project: The Beginning.

I'm honored to be participating in Joslin Diabetes Center's Blog Project this month, alongside a handful of other dedicated and passionate diabetes advocates. We'll each be writing four posts that detail our personal journey with diabetes, in the hopes that we can raise some awareness along with some money. Our goal is to raise $5,000, as a team, for the Joslin High Hopes Fund through this blog project.

Our prompt for this week is to "share a story from when you (or the person you blog for/about) were first diagnosed".

It's tough for me to remember much about my diagnosis with type 1 diabetes, over 26 years ago. I was just six years old, and anything that didn't involve My Little Ponies or She-Ra is pretty fuzzy in the memory department. (As it should be?) I do have faint recollections of my hospital stay and of the friends and family that came to visit me, and I recall bits and pieces of learning how to prick fingertips, how to administer injections, and how to count the food I was eating.

Notes from my original diagnosis records.

More than any of that, I remember the emotions of those around me. I may not have known what diabetes was, but I knew that it was serious. I knew it was bad. I knew that it brought the people I loved to tears. I knew that life was changing for me in big ways. Emotions play a huge role in diagnosis, just as they continue to do in our daily management.

But as for a concrete diagnosis memory? I'm afraid I don't have one related to my diabetes diagnosis. I do, however, want to mention something that I'm sure the Joslin Diabetes Center didn't realize (because I've never mentioned it) when they asked me to participate in this blog-o-rama: it was a Joslin endocrinologist who finally diagnosed my hypothyroidism over ten years ago.

That doctor was compassionate, kind, and thorough. His team bothered to find out what meter I was using, and got me an updated replacement (which meant I would likely be getting more accurate results to work with). He recognized the thinning hair, the pallor of my skin, the gradual weight gain, and the extreme exhaustion - the extended period of time that my thyroid condition went undiagnosed wrecked havoc on not only my physical appearance, but my mental health as well. He didn't scold me as past doctors did when he saw that my blood sugars were all over the place; he didn't rush to the assumption at my appearance was completely my choice (did I mention that this time period was my goth phase?); he didn't dismiss my sullen demeanor.

He looked at the whole person. He looked at me.

And because he was willing to do that, he found an answer that I'm not sure my previous doctor had even thought to look for. As we worked to find the proper Synthroid dose for me, bits of myself came back to the surface. Depression had griped me for so long that I hadn't realized how much of myself wasn't present anymore.

That doctor may have, indeed, saved my life. For that, Joslin Diabetes Center will always have a special place in my heart.

If you would like to make a donation toward our $5,000 blog project goal for the Joslin Diabetes Center, you may do so here.

Talking With Tony.

Tony Rose was kind enough to invite me on his podcast this week, and in case you'd like to hear me babble on about about things like diabetes camps, celebrating diaversaries, feeling angry about diabetes, Friends For Life and the You Can Do This Project (because I obviously haven't talked about those last two things enough), I have a link for you: http://bloggingdiabetes.com/2012/07/bdp-049-interview-with-kim-vlasnik-cgm-data-and-diabetes-news/

I also mention fanny packs. You've been warned.

Link To The Past.

I never knew my mom's father.

I have some idea of what kind of man he was, through the stories I've heard. There were always photos of him at my grandma's house, so I have some idea of what he looked like. (He looked an awful lot like my brother, by the way.) He passed away when my mom was young, so I never had the chance to meet him.

But I've always felt a connection to him. (I have a hard time thinking of him my "grandpa", as my grandma remarried and I always knew that man as my grandpa. Maybe the more formal "grandfather" fits here.)

You see, he's the closest blood relative I have that also had type 1 diabetes. He was diagnosed in his mid-20's, shortly after he and my grandma were married (she made donuts one morning; he got really sick - you can guess how the rest of the story roughly goes). A lot of the diabetes-related technology we use now wasn't around yet - home glucose meters, carb counting, disposable needles, etc.

Sometimes I think about what it would be like to talk with him. Did his lows have the same symptoms that mine do? What would he think of insulin pumps and CGMs? What did his complications feel like when they started? Would he have the same tongue-in-cheek view on life with diabetes as I do? Did living with it make him feel angry, scared, frustrated, defiant?

Every so often, when I see a triumphant 111 mg/dL (Yahtzee!) or something similar on my meter, I imagine a spiritual high-five with him. (Is that weird?)

As I sorted through those boxes of childhood stuff last weekend, I came across something that was handed down to me. It's a "Cookbook for Diabetics", published by the ADA in 1959. I thought I'd share a few of its pages with you. Some of it is surprisingly still relevant, and some of it made me chuckle. It also made me feel all mushy and emotional, as it's something that was his.



Can you imagine a world where people don't know
what a "calorie" is?





An ADA endorsement of cheese.  Love it.





Spiders, Archery, And Bonfire Poems.

Things got pretty heavy around here yesterday, and I want to extend a big thank you to everyone who read, responded to, emailed about, or retweeted that post.  I don't think I realized how badly I needed to get that story "out" until today, when my steps and disposition were a bit lighter and brighter than normal.

The process of writing yesterday's post got me thinking about the two years I attended diabetes camp.  I went to Camp Floyd Rogers in '93 and '94, and I don't think it's possible for me to overdo expressing how positive the experiences were for me, as a child with diabetes (also known as a "CWD").  It was one of the first times I had been surrounded by a bunch of people who "got it".  It was also one of the few times as a child that I felt "normal" about all of the diabetes parts of my life.

I can remember us all trudging to the food hall, standing in line to have our blood tests, and then meeting with the staff endo to figure out our doses for the day.  I can remember not having to worry about exchanges (this was in the dark ages, before carb counting), because they had it all figured out.  You were assigned a calorie group, and what group you were in determined where you sat.  Each table ate the same exact meal, and everyone knew what that meal would be as a result of a projector, transparency, and marker presentation before each meal.  (Old school - no PowerPoint!)

I also remember eating cheese, bread and butter sandwiches in the middle of the night to treat lows.  The camp counselors were tasked with checking all of our blood sugars at 2am, and anyone who tested under a certain threshold had to eat a sandwich, and maybe eat some glucose tabs, too.  (This was were I learned to over-treat lows, apparently.)

During my second year there, on the last night of camp, I remember having a big bonfire party.  All of the "older kids" sat around the fire, and everyone shared what the week had meant to them.  The one speech I remember was from a counselor who recited a poem he wrote about us campers.  His poem expressed how he felt so helpless when he saw one of us with a low BG level.  His words said something to the effect of "And all I can do is sit there, watching the energy drain from their faces.  I want to make it better right away, and I can't.  I have to suffer right along side of them."

I also have a lot of memories that aren't diabetes-related, like choosing the archery course because I had a crush on the counselor who was teaching it.  His name was Clay, and his birthday is January 7th.  (Why, and HOW, on earth do I remember that?)

I remember shaving the back of a girl's head, because she wanted me to (she was away from her parents, so obviously this was a good decision), and wondering if she realized that I had never even held a pair of clippers until right at that moment.  I kept my mouth shut and shaved.

The building with the showers was a long walk from our sleeping cabin, and the shower stalls were covered in spiders.  You couldn't kill them all, so you just had to shower with them hanging out on the walls.  This may help to explain my irrational fear of spiders.

My last year there, we "older kids" put on a carnival for the "younger kids".  We had face painting, an obstacle course, a kissing booth (on the cheek!), and a lot of other things I don't remember at the moment.  What I do remember is how much fun we had, and how I never wanted it to end.

In fact, I'd like to keep that party going.  I'd like a d-camp for adults - or maybe a d-prom?  Someone, please make this happen.  We can all wear our insulin pumps as corsages, and party mints will be replaced with glucose tabs.  Diet Cokes would be on the house, naturally.

That Other Thing.

I'm setting the snarky humor aside on this one.  (Well, most of it.)

This wasn't an easy post for me to write, and I've been going back and forth for a while about whether or not I want to share this part of my personal history.  I've also spent several days writing and rewriting this story, as I want to make sure to tell it the "right way".  Some part of me, the part that won this internal debate, feels that this story needs to be told - because I hope that sharing it might help someone else.  And, unfortunately for me, the story needs visual aides.  You've been warned.

Aside from type 1 diabetes, I also have hypothyroidism.  It's another auto-immune condition, and it essentially means that my thyroid gland is not making enough of the thyroid hormone.  It is fairly common in women, and is also common in those with type 1 diabetes (as it seems a diagnosis of one auto-immune condition makes it more likely that you'll have another).  It's usually no big deal (compared to diabetes, I guess) if you catch it in a timely manner.  You show a few symptoms, they prescribe you some Synthroid, and you're golden again. 

Unfortunately, "no big deal" wasn't the case for me.  It took a significant toll on my physical and emotional well-being, and I can say with reasonable certainty that it caused me to become a totally different person for a few years.  It felt like I didn't even know the person I had always been.

I was diagnosed sometime in 2003, and I'm reasonably certain that my thyroid had started to slack off long before then - years before.

Here's why I'm reasonably certain of that.

Aside from the whole diabetes thing, I was a healthy person up through college.  See?  Here I am in high school - actually, this picture was taken at diabetes camp, the last year I went.  I had permed hair.  (It was the early 90's.  Don't judge.)  I did cheerleading.  I took Tae Kwon Do (I wasn't kidding about that black belt).  I tried some ice skating lessons, as well as a good decade of dance classes.  I was a happy, active, and optimistic person, much as I am now.


I went off to college out-of-state, and things began to change.  My mom has described it as "sending me off to college one person, and returning from the first year as someone completely different".

Case in point: here I am, junior year of college.

Aside from my gothy transformation, you can tell that my skin had lost some color.  I also gained weight, but I attributed that to different eating habits and less exercise (as I was then living on my own, several hundred miles from the parents who had encouraged those good habits).  I never felt like I got enough sleep, and I would frequently miss my morning classes (which, again, is "typical college behavior", and so I didn't think much of it).  And here I am, about a year after that - notice that my skin is even paler, which hardly seems possible, and even my eyebrows have thinned out.

Aside from the physical manifestations of undiagnosed hypothyroidism (which for me were thinning hair, paler skin, relentless exhaustion, feeling cold all of the time, and weight gain), it also had a significant impact on my mental health.  I dealt with a great deal of depression back then - some of it diabetes-related, and some of it not.  The smiles in both of these pictures are misleading, as I never truly felt happy during those years in my life.  Moments of contentment existed, but in between those times, I felt lost.  I felt trapped in my own life, and wasn't sure I could do it anymore - or that I wanted to.

I did things during that time of my life that I wouldn't have ever done previously, and I wouldn't ever do again.  I know that college is a time for stupid decisions, but it was more than that.  The worst part may be that I never thought anything was wrong with me.  I knew I was a changed person, but I felt that was because the realities of life had finally settled on me, and this was how I was intended to exist.

One thing I always did, as a child and up through my teens, was to express myself through journaling and art.  I recently found some of that stuff from my college days, and even I can't believe some of what I wrote and drew.  (The picture below is the most tame one I could find.)  If I could time-travel myself back and give myself a reassuring hug, I would.  It all turned out okay, but it was hard to see back then that it ever could be.  Instead, I drew things like this:

By the way, I'm not wearing a headband
in this picture.  I had bleached my hair,
and dyed the bangs black.  Badass!

The aforementioned "stupid decisions" included things like dropping out of college (I went back and finished later on), and moving from Nebraska to Connecticut to go live with a dude I met on the internet (I eventually realized how dumb that was, and moved back).  Stupid decisions also involved hurting myself physically in ways I won't share here and would rather forget, but I can say that there are still marks on my arm to remind me. I can very vividly recall the night my mom noticed what I had done. Watching my mother's heart break right in front of me is something I won't ever forget, and I unfortunately can never take back.

The happy news is that I finally did "come back".  Getting my thryoid levels straightened out with the proper Synthroid dosage (and subsequently adding in Cytomel, too) got me back to feeling like myself; and the support of my parents, who never gave up on me even when it would have been so easy to, helped me to come out the other side.

Why my hypothyroidism wasn't caught early on, I'm not sure.  It's a big part of the reason I refuse to see one of the endocrinologists in town - I was under their care as this change took place.  It took an endocrinologist in Connecticut to get an accurate diagnosis. 

That diagnosis was a tough one for me.  I was already struggling with the idea of a lifetime of diabetes (even though I'd already been at it for 17 years), and having to add "pills you'll take every day for the rest of your life" didn't go over well.  It upset me that another one of my organs was giving up.  First my pancreas, then my thyroid gland... what else was next?  It felt like I was falling apart.

But, like most things, the body and mind adjust to the "new normal".  And I learned a lot of things:

1. Doctors aren't always right, and sometimes you need a second opinion.  And a third.  And maybe a fourth.
2. Severe changes in personality aren't just "life hitting you", and there's nothing wrong with asking for help.
3. Some of the toughest parts of life can have good outcomes - you just have to hang in there for a bit to see them.

The good I can see from living through this situation is the ability to empathize with and help others who are going through tough times, depression, etc.  It's a large part of what I do when I respond to Online Diabetes Support Team questions, and it's a topic that catches my eye on diabetes discussion boards. 

I also learned that you're never alone.  Sometimes you're just looking in the wrong places for help.

Childhood With Diabetes.

Last night, I was reminiscing.  While I was cleaning the kitchen, I had one of the Music Choice channels on TV, and the song "Sledgehammer" by Peter Gabriel came on.  (I can't help it; I'm a fan of 80's music.  It makes me happy.  So much so, that, dare I admit?  Dancing happened.  Good thing no one else was home!)  As I glanced at the screen, I saw that the song was released in 1986 - which is the same year I was diagnosed with diabetes.

Wow, Peter Gabriel's face has a lot of carbs.

As ol' Petey sang on about bumper cars and feeding rhythms, I began thinking back to my childhood.  More specifically, I thought about my childhood with diabetes.  Being diagnosed at six years old, I don't have many strong memories of Before.  That's not to say that my childhood memories can only be viewed through my diabetes - I have many fond memories that don't have a smidge of diabetes in them.  But, I thought I'd share some of the diabetes-related things I remember with you guys. 

Everyone have their slap bracelets and t-shirt clips on?  Righteous.  Let's do this.

• I have a memory of being in my newborn brother's room while my Mom was changing his diaper.  I can remember her telling me, through tears, that I might have diabetes, and what that would mean, but that everything would be "okay".  (And, guess what?  She was right.)
• I remember the playroom/meeting room at the hospital I was diagnosed in.  This is where the support groups met and where my parents and I first learned to do injections into dolls and oranges.  I also have a faint memory of the hospital room I stayed in after diagnosis.  And I remember getting flowers! 
• Back when exchange diets were the way to go, candy didn't really fit into that.  It wasn't like things are now - count the carbs, take insulin for it - where your diet can be flexible.  The hospital gave us one of those forest green ADA booklets to take home; the one that explained what exchanges were, and had pictures of what one "exchange" of certain foods looked like.  Because of the food restrictions I had, one of our neighbors at the end of the street I grew up on would always have RoseArt colored pencils or markers for me when I stopped at their house on Halloween.  I thought that was the coolest thing ever.  (Well, that and my She-Ra costume.)
• There was a pleather hospital bed in the room in the back of the nurse's office at my elementary school, where I'd lay down after shotgunning a can of juice.  Those naps were never long enough.
• Fanny packs were an ingenius invention for someone like me.  There was so much d-stuff to carry around (and meters were so much bigger then), and I was too young to be carrying a huge purse.  When these became popular, carrying all that stuff didn't look quite so out of place.
• A trip to the pediatric endocrinologist meant getting to walk past the NICU unit at the hospital (they were down the hall from each other).  Aww.
• The worst part about having a low blood sugar away from home was having to eat those nasty old BD glucose tabs.  Remember those?  They were square, white, chalky, and came in a foil punch-out two pack.  And they came in one flavor - "Yuck".
• All of my testing equipment, syringes, and associated accessories lived in a clear, rectangular plastic Tupperware container on the kitchen counter.  No matter what house we lived in throughout my childhood, that container always had a home there.
• One Easter morning, I awoke to paramedics in my room.  I am told that when my Dad had come to check on me first thing in the morning, as he always did, my eyes were open, but I was unresponsive.  Paramedics were called, glucagon was administered, and I came out of it just as they arrived.  I remember feeling embarrassed that strangers were standing in my room while I was still in bed with pajamas on.  (What a weird thing, of all things, to be worried about at that particular moment.)  This happened to me twice, though paramedics didn't have to be called the first time.  Unfortunately, this series of events lead to my next memory...
• As a child and tween, I had to sleep with one of those urine-detecting bed mats under my bed sheets.  It was probably 2' by 3', and it wasn't all that comfortable because it would make very loud crinkly sounds whenever I'd move around.  It had wires embedded in it that would detect moisture, thus triggering a very loud alarm for my parents if I ever passed out from extreme hypoglycemia again.  This bed accessory became especially embarrassing the first time I had a boy over, because I had forgotten to remove it before he sat down.  THANK GOD HE SAT ON THE OTHER SIDE.  Once I realized the potential horrificness of this situation, I quickly said "Um, maybe we should go watch TV in the living room.  Okay??"  He obliged.  Crisis averted.
• Rotation of your finger sticks and injection sites is important to avoid a build-up of scar tissue, so my parents and I devised a system.  In my log book, we'd assign each scheduled blood test a finger - L1 for my left thumb, R4 for my right ring finger, etc.  Injections were more memorable, so I guess we didn't need a system for those (or I don't remember what that system was).
• I loved, loved the Babysitter's Club series.  One of the four main characters, Stacey McGill, had type 1 diabetes, which made the books that much more relatable for me.  A popular children's book had a character with the same condition as me - it was reassuring.
• I can remember when JDRF was just JDF.
• The meter I had as a kid was the One Touch II.  It was huge by today's standards, the typical beige color all meters came in, and it came in a matching plastic snap-shut case.  (Thanks to Sara for the picture link!)
• Fundraising as a child for the annual JDRF Walk to Cure Diabetes was always something I - well - dreaded.  It was never a very enjoyable task to walk around my neighborhood and ask people for money, but I did it.  Did I use the guilt trip?  You bet I did.  My mom wrote out a script for me, which went something like, "Hi, I'm Kim, I'm ___ years old, and I have juvenile diabetes.  I will be doing the JDF Walk for a Cure on ____, and I was wondering if you would donate some money to my walk."  How could you turn that down?
• At the end of sixth grade, a classmate had a pool party and invited everyone in our grade.  Towards the end, this kid Michael decided it would be really funny to grab my towel and throw it in the pool.  Unfortunately he did this when I was sitting by the side of the pool, trying to recover from a bad low.  (Swimming lowers my BG very quickly.)  Somehow, in my confused and hypoglycemic mind, I thought that the longer the towel was in the pool, the more wet it would get.  Which, you know, totally makes sense, right?  So what did I do?  Dove in after it, and retrieved it from the bottom of the deep end.
• Speaking of grade school, I really missing skating parties.  You can't beat strapping on some old school roller skates, proudly wearing your fanny pack and friendship bracelets, and rolling along to "Ghostbusters". 

Diabetes was a part of my childhood, but that never made it an unhappy one - just a little different than it might have otherwise been.  I still got to do everything I wanted to:  take dance classes, play piano, try (and fail) at soccer and softball, go to slumber parties, and be a "normal kid".  It just took a few extra steps to make it happen.

To those who were also diagnosed as a child, what do you remember about childhood and diabetes?  Please share your stories in the comments section - I'd love to read them.

A Pancreas Confession Session.

Forgive me, Father Diabetes, for I have sinned.

(When was my last confession?  Um...  did you not catch the bra pic in my last post?  I think that level of over-sharing qualifies...)

I tend to pay a lot more attention to you on workdays, than on weekends.  When I'm sitting at my desk, it's really easy to remember to test every hour - because Ping is sitting right there, staring at me.  Weekends are another story; I sleep late, I never eat at the same time, nor do I eat the same foods.

I have gone weeks - maybe months? - without changing the lancet.  Ew.

I do a lot of S.W.A.G. bolusing.  Not as much as I used to, though, but I still do plenty of it.  I used to even SWAG when it wasn't needed - like, the nutritional information was right there and all I had to do was a little math - I guess because I felt tired of it.  But, I'm getting better; a lot better.  I'm sticking to some of the same foods, so that helps me remember the carbs in them, and I try to look up a restaurant's website first to check for nutrition info before I go out.  And, I try to remember that, Duh!, I have that food list in the Ping remote, just waiting for me to use it.

I've used you as an excuse.  I'm not proud of that, but it's the truth.  That middle school gym class where we were supposed to run a mile, and I said I was low, so I could sit it out and drink some juice?  Yeah, I wasn't.  But I did. 

I do all kinds of things you aren't "supposed" to do...  like sometimes I fill a pump cartridge with the remaining Humalog in a back-up pen, then use an almost-gone Humalog bottle for the remainder, and to get the air bubbles out.  (You aren't "supposed" to mix bottles like that.)  Hey - insulin is expensive, and I use a lot of it.  If there's a little bit left, I'm not wasting it.

I have often done a finger stick without washing my hands, using an alcohol swab, or anything even remotely close. 

I can remember times when I was younger that I would "fudge" my numbers.  You know - you test at 250, but you don't want to cause your parents upset (or have to admit that you snuck some candy/cookies/other yummy thing earlier), so you put down that it was 150.  I sometimes would take the proper correction for the 250, but write down that I took it for 150.  (Sorry, Mom.)  I didn't do it often, that I recall, but I know I did it.

I was never good about remembering to take my Lantus shots exactly 24 hours apart.  Sometimes it was 23, sometimes it was 28...

I don't remember ever telling any of my college professors that I was diabetic.  In hindsight, this was a bad choice - I could have had so many allowances if I had pointed out my medical condition.  I could have had food in class without getting called out in front of everyone for it (because then they would have known ahead of time why I was eating), I could have rescheduled tests if my numbers were wacky, and maybe I would have done better overall, my first time around.  But, I didn't want to be singled out.  I didn't want special treatment.  I just wanted to be like everyone else, if only in that respect.

During that same time period, I was very forgetful about replacing food to treat lows in my backpack.  I'd often walk around with absolutely nothing on me to treat a low, nor would I wear a medical ID bracelet.

I still don't wear a medical ID bracelet.

I've willingly sat through a low so bad that I could barely walk to get something to treat myself.  It happened during one of my college classes (Are you sensing a theme here, with this time period?  I call them my Dark Ages), where the classroom was very small.  Maybe 15 - 20 people.  I remember finding the instructor pretty intimidating, and they were of the persuasion that absolutely no one should leave during class for any reason, because it was only an hour-long class.  I can remember feeling that panic, breaking out into a sweat, and I'm sure my face went completely white.  How did he not notice this?  (Oh yeah, the Dark Ages were also my Goth Period.  Heh.  Oh, Kim.)  Maybe I was already so pale to begin with that he didn't notice?  I sat there, going back and forth with myself: "Okay, only 20 minutes to go.  But seriously, I feel like I'm dying.  I can't even hold my pen to write because I'm shaking so hard.  But I don't want to get in trouble... but I don't want to pass out, either.  But I don't want to get called out...  that would be totally embarrassing...  Okay, now the room just got fuzzy...  Am I even talking in English anymore?  Can people hear what I'm thinking out loud?"  I don't know how, but I somehow stumbled out to the vending machine and got what I needed.  (Another scary thought:  what if I ended up not having any change on me?)

I've traveled to the other side of the world with absolutely no back-up insulin plan.  (Stupid!)  This was back when I was on the Deltec Cozmo, my first insulin pump, and under the care of Dr. B.  Having my fair share of naivety, it never occurred to me that I could have a pump malfunction while away.  Thankfully, nothing happened and the trip was great, but geez... what if?  So many things could have gone wrong there.  I had no long-lasting insulin with me.  Heck, I didn't even bring any SYRINGES.  (Again, stupid!) 

And lastly - there are some moments, small moments, where I'm actually a little bit glad you're in my life.  Though you bring a lot of the "bad" with you, you've also raised me to be a strong, resilient, and compassionate person.  You require patience and hard work, and those types of things translate to every part of my life.  Because of you, I've had some great experiences and met people I may never have otherwise had a reason to interact with.  But most of all, you've given me some purpose.  Lending support to the other people you torment, and working to get you eradicated are two of the things in life that I'm most passionate about, and so I am thankful for that direction. 

As penance, I will continue to stab myself in the finger repeatedly every day, wear my robot parts happily, and live a long, otherwise healthy life. 

AMEN!