Monday, August 29, 2011

Speechless

I like words.  There aren't a lot of times where you're going to find me without something to say.

But after reading this book, it's taken me a while to get my thoughts together.


Breakthrough has been on my list to read, so when I found it at Half Price Books, I couldn't pass it up.  I knew what the book was about: the discovery of insulin.  What I didn't expect was how emotionally impacted I was by the story.

I may never look at a bottle of insulin the same way again.

Now the book itself isn't the best I've ever read.  Nowhere close.  It's as if the authors couldn't decide what kind of book they wanted to write, a history report or a novel.  The book was rather choppy because it kept switching back and forth between the two.  Breakthrough does have two authors, so maybe one wrote the historical pieces and the other wrote the novel pieces?  I don't know, but it keeps the book from flowing very well.

It took a good bit to get into the story, but I'm glad I stuck with it.  One thing that makes it slow is all the superfluous information.  I found myself skipping over a good bit of the historical info, simply because it wasn't really needed for the story to make sense.  I think the book could be much improved by cutting some of it out.

There's a very thorough review of the history of World War I.  I mean, I love history, but I didn't get the book for that reason.  I want to know about the story of insulin.  That's what the book is supposed to be about.

Breakthrough centers around two people: Dr. Frederick Banting, and Elizabeth Hughes, one of Banting's first patients.  Elizabeth's father, Charles Evans Hughes, is an important historical figure, serving both at Secretary of State during Wilson's presidency and on the Supreme Court.  Much time and attention is given to Hughes, in excruciating detail.  Again, much of the information seems superfluous.  He was an important figure in history, and as such, could afford to take the best care of Elizabeth that was available at the time.

Having said all that, I would still highly recommend the book.  As tedious as some of it is, and as many liberties as I'm sure the authors took in the more novelish parts, it's still worth the read.  Most definitely.

As a said, I was not expecting the emotional reaction to the story that I had.  One thing the book does is make it easier to imagine what my life would have been like if I'd been diagnosed 100 years ago rather than 18.

I would have died.  It's as simple as that.

If my family had been wealthy enough to put me in the care of Dr. Allen, I might have lived several years after my diagnosis.  His patients were put on strict limited diets with the intention of keeping them alive as long as possible on as little food as possible.  Under his plan. Elizabeth lived for nearly four years after her diagnosis.  FOUR YEARS.  Wow.  Just wow.

A parent was faced with the decision to either follow a plan like Dr. Allen's or let their child eat normally and die sooner.  It was a death sentence either way.  What was a parent to do?

Another thing that surprised me was the number of dogs who died during Banting and Best's research.  It's very sad.  I love dogs.  A lot.  And I cried after the section describing what some of those wonderful animals went through.  I know it wasn't their choice, but I appreciate their sacrifice.

Also, even after insulin was discovered and they started producing it, thousands of diabetics still died waiting for it.   There simply wasn't enough to give to everyone who needed it.  To be that close to the treatment and not able to get it must have been so heartbreaking.

And the pictures in the book.  Oh my, the pictures of children, before and after receiving insulin.  I cried looking at those. I still can't get them out of my head.

This whole process has been quite emotional for me.  The were several nights over the course of reading the book where I had trouble sleeping.  Couldn't keep my brain from spinning.  From thinking about how different my life could have been.

How many millions of people with diabetes died before insulin was discovered and became widely available?  How many still die today because they don't have access to insulin or can't afford it?  Heartbreaking. (Sidebar: check out the International Diabetes Federation for ways you can help get insulin to children who need it).

I may never look at a bottle of insulin the same way again.  Even on days like today, when my blood sugar is not cooperating AT ALL, I am still alive.

I owe my life to Banting, Best, and all the others involved in discovering insulin.  And thanks to the authors of Breakthrough, I have a better understanding of just what that means.



Wednesday, August 24, 2011

Wordless Wednesday (Or Close Enough)


You know you've been pumping a long time when you find this box in your grandparents' basement...

Tuesday, August 23, 2011

Cupcakes, Cards, and Memories


As I posted about last week, Saturday the 13th was my diaversary.  I went out to dinner with my parents, my brother, and my husband.  We went to one of my favorite restaurants, and got cupcakes from my favorite cupcake place down the street.  My cupcake was called Bella Nutella, and yes, it was actually made with Nutella.  And it was amazing!



And my family got me a card:



As mixed as my emotions were that day, it was a wonderful celebration with my family.  We talked about various things they remembered about my diagnosis and other moments from my life with diabetes.  Or our life with diabetes.  Because though I am the one with the disease, it affects all of them.

My dad was in tears thinking back to my seizures.  My mom just kept reaching over to hug me.  My little brother remembers running to hide under the kitchen table when it was time for my shots after I was first diagnosed.  True story.  I would sit in my chair at the kitchen table, injecting my insulin, and he would be hiding under the same table, both watching and hiding.  Oh, memories.

I know they are all proud of me, and that is a nice feeling.  The five of us (including Josh) have been through a lot together.  And I loved having them all with me, celebrating the fact that I have diabetes, it does not have me.


Sunday, August 21, 2011

One Week Later...

So I had my endo appointment one week ago today.

#waitingwithdiabetes
I was really hoping that my A1c had dropped from that 7.6% last time.

And it did.  To 7.5%.  Not exactly the drop I had in mind.  Sitting there with my wonderful endo, I was fighting back tears.  Yes, the past month has been incredibly stressful, triggering my food issues and higher numbers.  And as I was reminded, the last month weighs heavier in the A1c result than the first too.

But is was SO disappointed.  Yes, I have issues with stress eating.  Sitting and eating and eating and not SWAGing very well.  But damnit, I have been trying!!!  I've been doing the best I can.  I know that if I could remove that last month and have gotten my A1c at the two month mark rather than the three, it would be lower.

I alternated between being sad and angry.  But one week later, I am feeling better about the situation.  I of course tweeted my A1c frustration, and received so much support and encouragement, from too many people to list. I also called my mom and Josh, who were loving and supportive also.  Thank you all so very much.  It means a lot.

Yes, I wish it had gone down more.  But as so many friends and family members reminded me, it did go down, and that is a victory in and of itself.

I'm trying to focus not on the number, but on my overall health.  I am in a much better place mentally and emotionally than I used to be.  Yes, I still struggle with my food issues, but not every day like I used to.

I am talking much better care of myself, even if my A1c doesn't reflect that yet.  Eventually, it will.  I can do this.

Friday, August 19, 2011

You Know You're A Diabetes Blogger When...


  • You utter the phrase, "I need to blog about that," AT LEAST once a day.



  • Something happens, and the first thing you think of is a post from a fellow blogger about the very same thing



  • You sit in the car shaking from a low and still manage to snap a picture of the mentos you're treating with.



  • You take pictures of bloody infusion sets.













  • You have a running list of post ideas on your smartphone.



  • Your camera has more pictures of pumps, CGM graphs, meters, and other diabetes paraphernalia than pictures of people.











  • You see nothing strange about sharing personal hopes and fears about diabetes with the whole freaking internet.



  • You've never met some of your best friends in person.



Monday, August 15, 2011

Guest Post: Eighteen - Mom’s Perspective

So I have been bugging my mom for a while to write a guest post for my blog.  And she emailed me this last night!  Yay!  As you would expect, my mom remembers my diagnosis differently than I do.  Here's what she remembers:


Precious Jessica’s diaversary.  WOW - eighteen years - really?  My memories of her D diagnosis are somewhat different, yet the same.  I have a lot of trouble looking at those pictures of her 10th birthday.  WHY didn’t I know?  But can’t really go there - need to spread the guilt around some - not use it all up at one time...
It was Friday, August 13th, and we had gone to her well check up. We were told that Jessica’s bgs were elevated (via dipstick) so we went for a blood draw.  The call came at dinner, from the doc himself.  “Jessica’s bgs is 597.  Which hospital do you want to take her to tomorrow?”  WHAT?  We had no health insurance and my husband was unemployed. I spent a sleepless night on my face before God, pleading for His help.  Just how was this going to work?  GOD - that’s how.
At the beginning of that summer, I’d gotten a part-time job at a home infusion company.  After Jessica’s diagnosis, that same company GAVE us all her insulin, syringes, alcohol wipes. ketone strips, glucagon - everything we needed except the test strips.  And that continued until we got health insurance.  God.
For the next 8-9 years, the local children's hospital worked with me to let me pay for her quarterly endo visits, meters, test strips, etc. at a pace I could manage.  And if you could have seen my checkbook - you’d know Who it was.  God.
My husband - who is deathly afraid of needles - cooperated when I told him that Jessica would be ‘shooting’ us as often as she wanted to.  God.
Staying in Jessica’s hospital room, while she flitted around, making friends, learning about how to take care of her D, playing games.  I wasn’t allowed to leave - but she was hardly ever in the room - my social butterfly.  God.
Jessica’s room and floor mates: her roommate who had been in the hospital for more than a year after a serious car accident left her w/spinal cord injuries; the little girl next door who screamed all night long; the CF kids who had to be cupped and whose prognosis wasn’t good; the kids with cancer.  Perspective.  God.
Two seizures in the middle of the night.  Jess’ room downstairs, ours upstairs.  How did I know to get up and run downstairs?   God.
Jess has only been hospitalized twice.  Her initial diagnosis and when she got her pump.  God.
After dinner Thursday night, Jess sat down next to me and said “Saturday is the 13th.”  August 13th.  Eighteen years.   Amazing.  God.  

Thanks for the beautiful post, Mom.  And thank you for taking care of me for so long.  I love you!

Sunday, August 14, 2011

Broken Things

So I wasn't planning on writing a post today.

I was minding my own business, washing some dishes, and listening to Pandora.  Actually, Josh and I were washing A LOT of dishes, since our dishwasher decided to bite the dust after it had already been loaded.  Sigh.

Then the song Fix You by Coldplay comes up on Pandora.  And I have to stop.

This song always makes me tear up, even under normal circumstances.

But today, I am not feeling normal.

First of all, I am still coping with messy emotions raised by the loss of those two beautiful girls earlier this week.  And yesterday being my diaversary adds more messy emotions.  As does the fact that I have an endo appointment tomorrow.

So when Fix You came on, I stopped, sat down, and cried.  Kind of a lot.  Everything just came bubbling up.  I've been talking a lot to some of my DOC friends this week about how we're feeling.  Why we're grieving so much for two girls we never even met.  And why it brings up those dark thoughts and feelings we try to hard to ignore.

I am trying to be strong.  Talking with my parents yesterday about my diagnosis, seizures, and just coping with this disease for so long had my brain whirling too.  Emotional overload, anyone?

So I decided this post needed to be written.  Because I know that I am not the only one who feels this way (see these posts from George, Scott, Sara, and Kelly).  And this song pretty perfectly describes how I feel.  There are so many things I wish I could fix.

My diabetes.  The diabetes of my DOC friends.  Other things that plague those I love.  But I can't fix any of it.

On days like this, all we can do is hold onto each other, put our faith in something bigger than ourselves, and keep putting one foot in front of the other.

"Fix You" by Coldplay

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you 





Saturday, August 13, 2011

Eighteen

As of today, I have had Type 1 Diabetes for eighteen years.  I was diagnosed on Friday, August 13th, 1993.

Wow.

The pictures are from my 10th birthday, about two weeks before diagnosis.




Yikes.

This one is from the following February, about 6 months later.



What a difference!  I don't even look like the same kid!  And not just because of the dorky glasses.

The memories I have of my diagnosis are limited.  I remember my mom taking me to the grocery store to show me the sugar-free candy and ice cream.

I remember the nurse giving me my first insulin injection in my thigh.

I remember stabbing an orange with a syringe to practice.

I remember my parents letting me stab them with a syringe full of saline.

I remember my roommate who had been in a serious car accident, and been in the hospital for months and months.

I remember the hospital game room had a Pac-Man arcade game, and a Sega Genesis.

And that about sums it up.

So today is my diaversary.  Now, this is something I've never really celebrated before.  At all.  I spent a long time hiding my diabetes from others.  Pretending I was "normal."  Never talking about my diabetes at all, to really anyone.  That's all changed now, thanks to the DOC.

The day really snuck up on me this year.  It wasn't until Thursday night when I realized that Saturday was the 13th.  And I immediately decided that I WAS going to celebrate!

I am stronger than my diabetes.  Yes, it is a sad day.  My emotions today are more than a little confused. There's a lot to celebrate, but there's sadness too, especially after recent events.

But this is why I want to celebrate anyway: I have diabetes, it does not have me.  My friends in the DOC showed me this.   I spent a long time letting diabetes control me.  Ignoring the disease gives it power.

I am no longer doing that.  I talk about diabetes to people.  I answer questions when asked.  I wear my CGM sensor on my arm and my pump clipped to the outside of my pocket.  Diabetes is no longer hidden; it is out in the open.  I try to remind myself every day that I can do this.

Living with diabetes is still hard.  And scary.  But I am in such a better place mentally thanks to the DOC.  I am not alone.  That is worth celebrating.

Me and my confused emotions are going to dinner tonight with my husband, my parents, and my little brother.  These people have lived this disease with me for the past eighteen years.  And after dinner, we're all getting cupcakes.  That I am not baking.

And I will bolus for my giant cupcake on my diaversary.  Because I have diabetes, it does not have me.

Friday, August 12, 2011

It's Not Enough




I freaking love my insulin pump.

My first pump!
image credit here
I only did injections for four years.  I went on an insulin pump when I was 14, about one week before the start of my freshman year of high school.  And I had to go into the hospital for three days to learn to use it!  Seems crazy now, right?

Holy major life changes, Batman.

This happened sometime in mid-August.  I don't know the exact date of my "pumpaversary."

I've posted before about why I got a pump in the first place.  Sorry if I'm repeating myself.  Between sixth and eighth grade, I had three low seizures in the middle of the night.  NPH (also known as "The Insulin Who Shall Not Be Named"), had wicked peaks for me.  I would bottom out like none other.  Same with Ultra Lente.

So every night my mom woke me up to test and eat to prevent another seizure.

Every single night.

And so when I hear about lives lost to Type 1 Diabetes, like the two we learned about yesterday, I can't help but shudder.

That could have been me.

My parents' bedroom was upstairs, mine was downstairs.  And yet, they woke up for every seizure.  And called 911.  And I was ok.

But it could have ended differently.  Though this was long before Facebook or Twitter, someone could have been lighting a blue candle for me.

image credit here

My heart hurts for those families.  It feels heavy in my chest.

But we all know the fear.  And I can't help but be so grateful that I am still here.

That pump that my pediatric endo and parents fought so hard to get changed my life.  I don't feel it's an exaggeration to say that it saved my life.

For 14 years now, I been attached to this little machine.  Doing sets changes.  Filling reservoirs.  Tucking tubing back in my pants when it sneaks out.

14 years without a break.  Doesn't mean I won't ever take one.  And I'm not saying that a pump is the right choice for everyone.  That's not true.  It is the right choice for me.

Since I was able to get the CGM, I am a little less afraid.  That safety net does make me feel better, and has woken me up when I've gone low at night.

But I don't think anything will ever take away that fear.  Especially when you hear of other lives this disease has claimed.

I had trouble sleeping last night.  Not because I was afraid.  My CGM graph was rather pretty, actually.  But I couldn't turn my brain off.  When someone with Type 1 dies, it makes you think about all the things you try to block out.  All those feelings and emotions come to the surface.  Like it could have been me.

Diabetes is scary.  Most days, it goes ok.  Most days, I think, "I can do this."  And I can.  But it can be scary as hell.

Today, I am reminded why I love my pump.  Why it's worth the kinked sets and air bubbles and vampire cannulas.  I love this little purple, cupcake-covered pump.

But it's not enough.  We need a closed-loop system.  We need that Artificial Pancreas.  And a cure?  While I can barely dare to hope for one, we need it.  People are dying.

I know this post is all disorganized and rambly, but it's where my brain is right now.  It was going to be all about celebrating my pump.  So happy pumpaversary to me.  I love my pump as much as it's possible to love an inanimate object.  But today, it's not enough.







Thursday, August 4, 2011

Virtual Hugs Totally Help

Yesterday was a terrible day.

Really.

But the yuckiness had nothing to do with diabetes.  Which is a nice change of pace, I guess.  What made the day better though, actually did have to do with diabetes.

The Diabetes Online Community.

I missed the DSMA Twitter chat last night.  Just wasn't feeling up to it.  But my phone buzzed to let me know I was getting mentioned even when I wasn't there.  And it buzzed again because someone wanted to know if I was ok.  And when I tweeted I'd had a bad day, my phone buzzed again with virtual hugs from my DOC friends.

And all of that made me feel so much better.

So thanks Sara, Simon, C, Martin, Cheri, and Caroline.  You lifted my spirits, and made a horrible day so much better.

I love the DOC.  And virtual hugs totally help.

Monday, August 1, 2011

You've Got Mail!

In the guest post I wrote for Sara a little while ago, I joked that I needed Kim to send me some business cards because I keep running into adult PWD.  It's seriously crazy.  And of course, I tell them about the You Can Do This Project (YCDT).

Well, Kim actually offered to send me some cards, and I said sure.  So over the weekend, this arrives in the mail (excuse the terrible erasing job):

Cupcakes, glitter, and bacon! 

Totally made my day!  Kim's got some mad art skills! :)

So now I have a few of her cards to carry around.

Even more exciting is that, thanks to Meredith, there is now a flyer for the You Can Do This Project that you, yes YOU, can print and hand out.  Or hang up.  Or just give random people.  Whatever.

I plan on taking some to my next endo appointment and asking if I can put them in the waiting room.  And checking with other local diabetes centers about putting some in their lobbys.  And emailing my local JDRF about them having the flyers available at different events.

Kim wrote a beautiful post about the need to reach more people affected by diabetes.  The DOC has been my saving grace.  And if you're reading this, then it likely has been for you too.

Kim did NOT ask me to say anything about YCDT.  I choose to because I strongly believe in the project.  It has helped me immensely.

I had the honor to be the guest on DSMA Live last week.  The topic of DOC outreach came up.  The DOC may feel big to us, but if you think about how many PWD there are in the world, it's really not very big at all.

So how do we reach more people?  I didn't even realize how badly I needed support until after I found the DOC.  I never want to go back to that dark place.

I truly believe, with all my heart, that YCDT is the perfect gateway to the DOC.  Watching videos isn't intimidating like Twitter or even blogs can be.  All you have to do is watch and listen.

So I'm asking you to please print off some flyers.  Take them to your next doctor's appointment and ask to put them in the lobby.  This simple act could completely change someone's life.

Imagine how many people we could reach if we ALL handed out some flyers?