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.

The Plague, And Other Things I Avoid.

I tend to go back and forth between two schools of thoughts when it comes to diabetes and food. 

The first says that people with diabetes can eat whatever they want - you just have to figure out how to bolus for whatever it is you're eating.  The second says that some foods are just too evil, and should be avoided.

I'm not sure I can totally jump on board with either one.  I do believe that I can eat just about anything (in moderation) and figure it out, but I do have one exception.  In the spirit of that second school of thought, I thought I'd share which food I've totally given up on.  (Or, that I'll eat when I'm feeling spiteful and defiant.)  Try and try as I might, I just can't get it right bolus-wise.

The offender:

Man, I think my blood sugar jumped a few points just from looking at that picture.  It doesn't matter what kind - sugary, healthy, high fiber-y, small portion, not-so-small - all breakfast cereal messes with me.  I've tried bolusing 20 minutes prior.  30 minutes prior (and promptly dropped low before eating, then spiked like crazy).  I've tried a combo bolus.  I've tried a super bolus.  I've tried yelling.  Nothing works, and it bugs the heck out of me that I can't figure it out.  It's funny, because I'm pretty sure that cereal has always messed with me - but until I started using a CGM, I never noticed it.  And now that I know, I can't justify risking it most of the time.  Even though I Really.  Love.  Cereal.

Are there any foods you avoid, diabetically speaking?

Check Out My DiabeTee!

My friend Jeff challenged the DOC (diabetes online community) to come up with their own diabetes-themed t-shirts, and post them on their blogs today.  It's International Diabetes T-Shirt Day, and here's what I came up with - I know it's a little bit cheesy.  Don't be cruel.  Now if only I could find some blue suede shoes for World Diabetes Day, my outfit could be complete!

**Special thanks to my buddy Desiree for getting me a t-shirt hookup on such short notice!  It turned out great!  :)

The Test That Is Both Big And Blue.

What's the Big Blue Test? If you haven't already heard about it (which is hard to do - it's all over the place online, which is awesome!), here's the deal, and why you should support it.

The Big Blue Test is a global initiative designed to raise awareness of the benefits of moderate exercise for people with diabetes, and it's also a way to raise money for two diabetes charities that provide diabetes medication and supplies to children in the world's poorest countries.

Here's what you should do.

Number one, watch the promotional video below this paragraph about the Big Blue Test, created by the folks organizing it - the Diabetes Hands Foundation. It's less than two minutes long - you can do it! Besides being a pretty cool video starring some of my favorite faces in the diabetes community, your viewing of it will translate to a donation made by Roche Diabetes Care, up to $75,000, towards that pot o' money going to charity. To be specific, the money will be going to the Life For a Child program (run by the International Diabetes Federation), and Insulin For Life.






Number two, for those of us with diabetes, participate!  (This will be slightly challenging for me, as the timing coincides with JDRF's Type 1 Talk, but maybe I can work something out.  Hey, if I can get exercise in the restroom stall at work, I should be able to pull this off, right?)  At 2:00pm local time, people with diabetes are invited to test their blood sugar, do 14 minutes of activity, test again and share the results.  (14 minutes, on the 14th of the month, and taking place at 14:00 hours!  Genius!)  Share the results of your own Big Blue Test on the Big Blue Test website, on Twitter by using the hashtag #bigbluetest, on Facebook, or any other way you choose.

Please share this video with others, if you don't mind.  I'm even giving you a cute little link to share it online:  http://bit.ly/bCFJdn

I hope you'll join in!

Meet-ups.

There's something delightful and familiar about meeting someone else with T1 for the first time.  On Saturday, I had the pleasure of meeting up with fellow T1 and erstwhile diabetes blogger Kay while she was in town for the football game.  My husband and I joined her and her friend downtown, as they were on their way to pick up their tickets. 

Is it just me, or are people with diabetes some of the most friendly and awesome people on earth? 

Kay and Kim.

We walked around UNL's campus for about an hour or so, and never ran out of things to talk about.  Kay brought up, and I totally agreed, that there always seems to be a sense of familiarity among T1's; even if you've just met, you feel as though you've known the person for some time.  There seems to be an undercurrent of understanding among us.

We talked about her insulin pump scare the day before; how others are never as excited about the straight line on our Dexcom graphs as we are; what our favorite flavor of glucose tabs are (fruit punch for me; grape for Kay); her meet-up with Lorraine in NY, and my meet-up with the TCOYD Des Moines folks in September.

We also discussed another point.  As I get to know more and more PWDs, I find that there is a segment of the population who seem to have it all "figured out" - or, at least they sure make it seem that way.  They do the same thing every day, and get the same results.  I asked Kay, "Is it like that for you?  Because most of the time, I feel like the numbers have the lead, and I'm just chasing after them, not the other way around.  I mean, everything works sometimes, but it's definitely not all the time."  It's as if my whole regimen has to be rehauled every few months, because what worked before just doesn't anymore.  While I am so happy for others who have an A1C significantly lower than mine, or who don't experience the fluctuations I do, some part of me feels a little bit left out.  Knowing that others deal with this too gives me some encouragement and motivation to keep at it.

It was a pleasure meeting you, Kay!  (And Go Big Red!)

I Might Be A Diabetes Snob.

Recently, I attended an insulin pump class at one of my local medical clinics.  I've never gone to a pump class before, and I was hoping this could be a good place to meet some other people with type 1, while learning some new tricks.  In my most wildly imaginative version of how this could go, I envisioned us all bolusing simultaneously, comparing notes and strategies, with glucose tabs and test strips flowing freely.  Perhaps some diabetes-related cartoons or video clips would be shown.  Someone would finally reveal to me The Mystery That Is Bolusing For Breakfast Cereal, and I'd tell everyone about D-Prom.

 The title of the course was "Advanced Insulin Pump Class", and the description told me that I'd be attending a "holiday meal planning session that includes information on how to adjust bolus dosing".  And, there would be free dinner.

I don't want to sound like a know-it-all, but... in this class, I apparently did know it all.  I didn't learn a single thing, and I'm feeling disappointed. 

My top hat and monacle felt
slightly out of place.

Is it simply because I am a very engaged patient?  Is it because I expected, with a description like "Advanced", that we wouldn't spend time discussing the difference between a basal and a bolus?  Is it because I spend most of my free time blogging, advocating, and using social media (Facebook, Twitter, etc.) to discuss diabetes, and have learned so much more than your average Jane Diabetic because of it?  Is it because I actually read the manual that came with my pump (and downloaded a copy to my work computer for referencing)? 

Whatever the cause, I felt very out of place, and I wasn't expecting that.

My husband and I were the youngest people there by quite a margin.  Some of the people there already had insulin pumps, but didn't know how to use the extended/dual wave/combo bolus option.  (That was me at one time.)  Some people were considering getting an insulin pump.  (That was me at one time, too.)  One lady asked at the end of the class, "I need to ask, what exactly is diabetes?  Like, what does it do to the body?"  And then we all had to sit there while the dietician leading the class explained it to her.  (She said she had "pre-diabetes", and I wondered who had recommended an Advanced Insulin Pump class to her.)

I was also shocked to find that there was no nutritional information provided about our meal.  I mean, come on.

There were so many times I wanted to interrupt the dietician teaching the class.  I kept wanting to add something to what she was talking about, or to rephrase it.  For instance, when talking about extended boluses, she showed a slide of the different types of extended boluses, but then only explained what the combo bolus is.  What about the square wave?  What about the super bolus?  (I love that it sounds like a superhero, by the way.)  At another point, she told someone that if they "programmed their pump right", their blood sugar should be back in normal range at the two-hour mark after a meal - as if the pump user's ability to program would be the only possible issue at play.  She also remarked that when eating pizza, she "definitely wouldn't recommend testing every hour or anything".  It was at this point that my husband and I both involuntarily let a chuckle escape.  We couldn't help it.

It got me to wondering...  is my level of knowledge in handling my own disease really that advanced, or am I just a Diabetes Snob?  Am I engaged to the point of being arrogant?  Is it out of line to think that I might know more about the subject at hand than the person teaching it? 

And would anyone else attend a class for the So Super Advanced We Don't Know What To Do With You?

Diabetes Awareness Month.

Call it what you like - "National Diabetes Awareness Month", "American Diabetes Month", "Diabetes Awareness Month" - but November is a month to raise awareness of what it's like to live with diabetes, and to advocate for research towards a cure.  In that spirit, I'm planning to post a blog about diabetes every day this month - 30 posts in 30 days.  (I hope.)  I don't typically blog that often, but I think I'm feeling up to the challenge.

I hope you'll join me - and if you don't already blog, this is the perfect time to start!  You can start a blog (for free) on sites like Blogger.com and Wordpress.org, or start one on diabetes communities like Juvenation.org, TuDiabetes.org, and the ADA's new "Connect" community.

I'll be talking about a few different ways to get involved over the next 30 days, and I'll be doing a guest post for another website as well.  You'll still find me discussing my day-to-day with diabetes here, and I might even find a guest blogger or two to help me out here. 

Does anyone else find it funny that the acronym for Diabetes Awareness Month is almost a swear word?  Kind of appropriate, I think.

Photo credit: TuDiabetes.org