Friday, December 21, 2012

We Still Have Hope

The holiday season is a time usually full of joy.

Except when it isn't.  This year, it seems to be full of grief.  It has been one week since the shooting in Newtown, and our entire nation is grieving.  Myself included.  People in the path of Hurricane Sandy are still struggling to recover.

It's hard to be joyful when you know so many families are suffering. And on a personal note, this holiday season marks 10 years since I lost one of my best friends.  So much grief.  So much pain.

And yet.  Hope still lingers.  Search the hashtag #26acts on twitter and prepare to be amazed.  So many people doing acts of kindness for others.  There is good in the world.  There is peace.  There is joy.  Even when we can't see it, it's there.

I've been listening to this song quite a bit this week.  If you've never heard it, please take a moment and listen.  We still have hope.

"Oh when you're still waiting for the snow to fall
It doesn't really feel like Christmas at all
Still waiting for the snow to fall
It doesn't really feel like Christmas at all

Those Christmas lights
Light up the streets
Down where the sea and city meet
May all your troubles soon be gone
Oh Christmas lights, keep shining on

Those Christmas lights
Light up the streets
Maybe they'll bring her back to me
Then all my troubles will be gone
Oh Christmas lights, keep shining on


Oh Christmas lights
Light up the streets
Light up the fireworks in me
May all your troubles soon be gone
Those Christmas lights keep shining on"


Christmas Lights- by Coldplay



"May all your troubles soon be gone
Oh Christmas lights, keep shining on"



Tuesday, December 18, 2012

There Are No Words


Since news of the shooting in Newtown broke on Friday, I have been a big ball of emotions.  It's difficult to know what to say.  There are no words.

Last night, I saw this article with quotes from Mister Rogers.  This one jumped out at me:

“There’s no ‘should’ or ‘should not’ when it comes to having feelings. They’re part of who we are and their origins are beyond our control. When we can believe that, we may find it easier to make constructive choices about what to do with those feelings.”

From The World According to Mister Rogers

Such a very wise man.




Wednesday, December 12, 2012

Monday, December 10, 2012

Never Crossed My Mind


Back in March, I wrote about my new love: Sure-T infusion sets.

But they did not love me back.  After a torrid affair, I have switched to a different set.  Why, you ask?

I thought I was going crazy.  Unexplained highs.  I could NOT figure out what was going on.  This summer, it was ridiculous.  I was having so many highs and could not explain why.  I don't mean binge eating highs, I mean highs FOR NO REASON.

I was changing my set every other day.  I thought it could be the insulin, so I replaced it.  Maybe something was wrong with my pump?  I called Medtronic multiple times to troubleshoot, to no avail.  Still high a lot.  Scar tissue?  None that we could find.

I called my CDE in tears.  After several months of this craziness, I was done.  I was about ready to give up on the pump, because I could not figure this out.

My CDE was out of the office when I called, so I spoke to another CDE in the practice.  Barely got my words out, I was so upset.

"Have you tried different sets?" she asked.

The thought had never crossed my mind.  I LOVED my Sure-Ts.  The steel cannula can't kink, I can barely feel it when I put it in.  My beloved Sure-Ts couldn't possibly be the culprit.

Oh yes they could.  I started using Mio sets.  And guess what?  All those random highs?  Gone.

What the eff?

Since then, I've talked to a couple different people on Twitter who've had a similar experience.  For some reason, my body really doesn't like the steel cannulas.  The insulin just doesn't absorb.

I want to be clear that there is absolutely nothing wrong with Sure-Ts.  It's not the sets, it's my body.  I don't think I'll be able to use any kind of steel cannula set.

For several months now, I've been using Mio sets.  I miss the Sure-T.  But I don't miss all the highs.  Or feeling like I was losing my mind.  But I do like the Mios.  I've been having good luck with those.  They hurt more than the Sure-Ts to put in.  But they work.  At least mostly.  I still sometimes have kinked sets, occlusions, and hit bad spots.  I have diabetes, after all.

But my body absorbs the insulin just fine from the plastic cannula.  Thank goodness!  What a relief!

And at least the Mios come in pink.

Aftermath of a set change



Wednesday, December 5, 2012

Tuesday, December 4, 2012

Please Don't Retire Anytime Soon


Back before Thanksgiving, I made a trip to the endocrinologist.  I do this every three months.  But this visit was different.

In my nineteen years of living with Type 1 Diabetes, I have only had two endocrinologists.  When I was diagnosed at age 10, I started seeing a pediatric endo at my local children's hospital.  Dr. C was my  endo until he left the children's hospital after I graduated high school.  It was time to find an adult endo.

So I started seeing Dr. H.  He was referred by a couple adult T1s my mom knew.  Ten years later, he's still my endo.  Why?  He is always supportive, never judgmental.   Even in the throughs of my binge eating and depression, when my A1c was more than a bit high, he only said, "We can do better."

I actually felt pretty good going into my most recent appointment.  I mean, I was nervous.  I don't think I'll ever not be nervous about going to the endo.  But since things have been looking up, I was confident that my A1c and Dexcom reports would reflect that.

Dr. H comes in the room and we're chatting as we wait for my A1c results to come back.

"How long have you been coming here?" he asked.

"Ten years," I replied.  "Can you believe it?"

"Wow," he said.  "It doesn't seem like that long."

And this is where this appointment became different.  Dr. H looked at me and continued:

"You know, I've been practicing for 30 years.  When you're a young doctor, you don't think about how your practice will grow and change with you.  I have patients who've been with me the whole 30 years.  They came as newly diagnosed Type 2s in their 50s and 60s.  Now they're in their 80s and 90s, facing new and different challenges in their diabetes.  It's really mind boggling."

I sat there, almost speechless I was so moved at what Dr. H had said.

I swallowed the lump in my throat and mustered: "Well, I think that's a tremendous testament to what a wonderful doctor you are."

Dr. H just smiled.  At that moment, the nurse came in with my A1c.  Dr. H's smile got even bigger.  He showed me the piece of paper.

My jaw dropped.  "Does that really say what I think it says?" I asked.

"Yes it does!" he replied.  "Way to go, kiddo!"

YOU GUYS!  My A1c dropped again.  I am now officially at the best A1c of my life.  Safely.  Without too many lows.  I still can't believe it.

I know my A1c is just a number.  It doesn't define me or my diabetes.  But hot damn does it feel good to see tangible evidence that I'm not just feeling better, my health is better.

I wanted to hug Dr. H.  I wish I had.  I could tell how proud of me he was.  He knows about the binging and depression.  My amazing CDE at his office is the one I sought help from in the first place.

So thanks Dr. H for all your support.  For never making me feel like a failure.  And for helping me and so many others for so many years.

Please don't retire any time soon.


Wednesday, November 28, 2012

Thankful


Thanksgiving is over.  Back to the real world we go.

I hope you had a nice Thanksgiving!  Mine was kind of a mixed bag.

Thanksgiving means family.  Which is wonderful!  But Thanksgiving also means food.  Lots of food.  Lots of junk food around.  Which is not a good thing for Jess.

Since things have been going so well, I was determined to have a wonderful holiday.  I was able to spend the long weekend with my grandparents and other extended family.  And that was good for my soul.

I ADORE my grandparents.  They are my heroes.  I am blessed enough to still have all four grandparents, though I was only able to see one set of them over Thanksgiving.  Poppa is 94 and Grandma is 91, but you'd never know it from how they act.  I love spending time with them.



Poppa is a WWII vet.  He was on a bomber plane.  After watching Memphis Belle on TV, we broke out his old photos and flight logs.  I love looking at those pictures and hearing about his missions.  It always reminds me how blessed my family is he ever came home.

Pop's picture is actually in this book with the rest of his crew.  I think it's simultaneously amazing and hilarious!



And grandma?  She's a firecracker.  I get my sense of humor from her.  And I hope I have half her determination if I live to her age.  Grandma still bakes her famous chocolate chip cookies.  She refuses to hand the reigns over to someone else.  I tried to help and she wouldn't let me!

Spending time with my grandparents and other extended family was so refreshing and so needed.  I don't get to see them as much as I'd like to.  But the food.  Oh, how I was dreading dealing with the food.

Did things go perfectly?  No.  Could it have been worse?  Most definitely!  Diabetes decided to be a royal pain in the ass all weekend.  I was high no matter what I did or didn't eat.  It was so frustrating!  Did I cave and binge eat some?  Yes.  Did I binge as much as I tend to do at holidays?  No.

While I could have done better, I'm kind of proud of myself.  Because when my bgs are high for no apparent reason is when I'm most likely to binge.  Yes, I ate too much.  I let the frustration get to me.

But still.  I could have eaten a lot more crap than I did.  And to me, that shows progress.

Having people around who understand helps tremendously.  Josh and my mom support me no matter what, and I'm so grateful to them for listening and putting up with my grumpiness.  And to my DOC friends on twitter.

And I'm thankful for these people:



I am so blessed to be surrounded by such wonderful friends and family.  For the unending support, encouragement, and patience.  Thank you.

"I'm in repair.  I'm not together but I'm getting there." - John Mayer



Wednesday, November 21, 2012

So Much Richer


One of the most magical things about the Diabetes Online Community is when online friends turn into offline friends.  When you can get together in real life.

Colleen is in town for a few days, so last night, a group of us got together for barbecue!

Photo courtesy of Jon

I'm down there at the end next to Charli.  Bob was also there, and Scott, as well as Barb and Jon.  And a few other friends and family members.  We ate good food, swapped stories, and laughed.  We tend to get a bit rowdy when we get together.  Shocking, right?


Charli and I

Meetups like this are good for the soul.  I can feel it deep down in my heart.  I love these people.  These strangers who have become friends.  As Thanksgiving approaches, I am so thankful for the friends I have made in the DOC over the last two years. I have found love, support, and acceptance.

Thank you, DOC.  You make my life so much richer.  Happy Thanksgiving.



Tuesday, November 20, 2012

Real, Tangible Hope


I'm almost afraid to say anything.  I don't want to jinx it.

But here we go anyway.

YOU GUYS!  I can honestly say, for the first time in a long time, that things are going really well!

Just typing that sentence makes me want to cry.  I've wanted to be able to say that for a long time, and now I actually can.  Not that everything is perfect, but definitely better.  The plan my psychologist came up with is really helping.  I feel like I've turned a corner.  There is no magic fix for my myriad of issues, but something has changed. 

The good days are outnumbering the bad days.  I have more energy.  Most days, I'm able to come home from work and actually do something, rather than immediately collapse on the couch.  It's a nice feeling.

And the binge eating?  It's not gone, but I no longer feel completely powerless against food.  I'm feeling so much better overall that I'm mostly able to cope without turning to food.  My therapist was right.  The feelings of depression and anxiety are what causes me to binge eat.  So treating those feelings treats the binging.

But I still can't help feeling like I'm walking on a tightrope.  As well as things are going right now, I still feel like at any moment I could slip.  That the darkness still lingers, one step behind me.  And it scares me.  My issues haven't disappeared.  They're still there, lying in wait.  I know I will struggle again.  Like I said, there is no magic here.

But still.

Hope.  That's what I have.  Real, tangible hope.  And I want to say thank you.  For the never ending support and encouragement.  For always reminding me that I can do this.  For never giving up on me.  My husband, my family, my friends, and the Diabetes Online Community.  Without all of you, I NEVER would be here.  You have carried me when I couldn't find the strength to stand.


As Hemingway said, I am "strong at the broken places."


Friday, November 16, 2012

No Fanfare Or Glory


Every few days.  Like clockwork.  I go through the motions, but don't really think about what I'm doing.

Filling another reservoir for my insulin pump.  With the substance that keeps me alive.

Insulin.  It's such a simple thing, so much a part of my life I don't even really think about it.

Except on Wednesday.  Wednesday was World Diabetes Day.  And the birthday of Dr. Frederick Banting, the man who discovered insulin.

I don't think of myself as a sick person.  As a person with a disease.  But as I stood there, drawing the insulin from the glass bottle down into my pump reservior, I was reminded that I am.

As much as I don't like to think about it, Type 1 Diabetes is a disease.  And prior to 1922, it was a death sentence.  The work of Banting, Best, and the other men involved have saved so many lives.  They saved my life.  The lives of so many of my friends.

A bottle of insulin is such a tiny little thing.  Not much fanfare, not much glory.  But when you think about it, it's kind of miraculous to stand there and hold a bottle of the substance that keeps you alive in your hands.  And to think about all the people who died before insulin was discovered.  And the people still dying today for lack of access. 



Without this tiny bottle of insulin, I would have died at age 10.  The last 20 years of my life--poof!--gone.  I am so thankful and grateful for everyone involved in the discovery of insulin.  I quite like being alive.

If you've not read the book Breakthrough, I highly recommend it.  It changed the way I look at insulin.  It's a lengthy and emotionally intense read, but completely worth it.  Dr. Banting and Elizabeth Hughes are forever etched in my memory.

So Happy (Belated) Birthday, Dr. Banting.  Thank you for being so doggedly determined, and refusing to give up despite the odds.  What you discovered keeps me alive each and every day.



Thank you.



Tuesday, November 6, 2012

NHBPM Day 6: I Might Have Glared

This month, I'm participating in WEGO Health's National Health Blog Post Month (#NHBPM).  Which means I'm attempting to post every day during the month of November. 

For more information or to sign up, see here.



Day 6 Topic: "Write about the time you had to take the high road."

I was in high school, walking to class, my insulin pump in my pocket.  Actually I may have had it out to bolus or something, I can't remember.  This was over 10 years ago.

"Hey!" I hear a loud voice shout.  I turn around, and standing there is a teacher I recognize but don't know (it was a big school).  She does not look pleased.

She hold out her hand: "Give it to me."

"What?" I said.

"Your phone," she yells.  "You are NOT allowed to have a phone at school!"

This shook me up quite a bit.  I hate getting in trouble.  But I was able to muster enough courage to respond.

"It's not a phone, it's an insulin pump.  See, it's attached to me," I say, holding the pump up so she can see the tubing.

The look on her face is a mix of shock and embarrassment.

"Oh, well, get to class then," she mumbles.

And I did.  Despite being mortified and humiliated, I didn't say anything unkind to her.  I didn't report her to the principal.  I just walked away.

Though I might have glared whenever I saw her in the hallway from then on.


Monday, November 5, 2012

NHBPM Day 5: #ListOf3

This month, I'm participating in WEGO Health's National Health Blog Post Month (#NHBPM).  Which means I'm attempting to post every day during the month of November. 

For more information or to sign up, see here.



Day 5 Topic: "Write a #ListOf3 things you're thankful for/excited about/inspired by."

1. I've been sitting here for a while looking through old blog posts.  And in doing so, I've realized just how far I've come.  Things are by no means perfect, but so much better.  And I'm so thankful.


2. I'm excited about the holidays!  Though the food can be a challenge, Thanksgiving and Christmas mean upcoming time with family.  I am blessed to still have both sets of my grandparents.  And as each holiday passes, I'm aware it could be their last.  So I treasure the time I get to spend with them.


3. You.  Yes, YOU.  I am inspired by you, my DOC friends.  Because on days when I feel like I can't do this, knowing you are out there doing this restores my hope.


Sunday, November 4, 2012

NHBPM Day 4: (Over)Sharing

This month, I'm participating in WEGO Health's National Health Blog Post Month (#NHBPM).  Which means I'm attempting to post every day during the month of November.  I've been sick and gotten behind, so I'll be posting three times today to catch up!

For more information or to sign up, see here.



Day 4 Topic: "Disclosure post.  How did you decide what to share?  What do/don't you share?"

Disclosure is a very personal topic.  We all have things we don't mind sharing with other people, and things we'd rather keep to ourselves.  The only person who can dictate what I chose to share is me.  And likewise, I have no control over what other people chose to share.

Like I said on day one, I probably overshare.  There's stuff I'll talk about here on my blog that are quite difficult to discuss in person.  I've always been better at communication how I really feel through written word, rather than chatting face to face.  Easily intimidated in person, I guess.

I do share a lot here, but certainly not everything.  This is the internet, after all.  All of this is out there for anyone to see.  There's information I may choose not to share, either to protect myself or people I care about.  And even when it comes to my health, there are things I choose to keep private.  It really just depends.

I say what I feel I must say.  Sometimes that's a lot.  Sometimes it's only a little.  And that's ok.

For me, honesty is essential.  Being true to who you are and what you feel.  The most powerful posts and stories I have ever read all start there.  And you can be honest without sharing every nitty gritty detail.  We all have secrets we keep.

But I am a big fan of oversharing.


NHBPM Day 3: Which Doctor?

This month, I'm participating in WEGO Health's National Health Blog Post Month (#NHBPM).  Which means I'm attempting to post every day during the month of November.  I've been sick and gotten behind, so I'll be posting three times today to catch up!

For more information or to sign up, see here.



Day 3 Topic: "A post about a conversation with your doctor."

My first thought when I read this topic was, "Which doctor?"

My primary care physician?

My endocrinologist?

My OB/GYN?

My Certified Diabetes Educator?

My psychologist?

My ophthalmologist?

My dentist?

Sometimes it feels like all I do is go to the doctor.  But I know that's not true.  And I know there are people who deal with illnesses that cause them to see way more doctors than I do.  Which is why doctors are so important.

Thanks to my involvement in the Diabetes Online Community, and in the patient community online in general, I've really learned to be picky when it comes to my health.  I've learned a lot from my mom too.  Growing up, she was the one to advocate for me.  And she would not shut up until they listened.  I'm so thankful to have learned that from her.

All the doctors I listed above are people I trust.  I choose to continue to see them because of their support, understanding, and expertise.  They listen to me.  They never make me feel like an idiot, no matter how stupid the question.

They want to see me succeed.  That's what a doctor should be.


NHBPM Day 2: Sing From My Soul


This month, I'm participating in WEGO Health's National Health Blog Post Month (#NHBPM).  Which means I'm attempting to post every day during the month of November.  I've been sick and gotten behind, so I'll be posting three times today to catch up!

For more information or to sign up, see here.


Today's Topic: "Find a quote and use it as inspiration."

This is an easy topic for me.  When someone asks what my favorite quote is, I know the answer right away.  I even have a keychain with the quote on it:



"If you sing from your soul, you're never wrong."

The writing is quite faded after being on my keys for more than 10 years.  This quote is something my high school choir director said to us all the time.  My senior year, he presented these keychains at graduation to all graduating choir members.  And it's something that has stuck with me all this time.

Choir was my life in high school.  Sure I had some friends, but I was by no means popular.  Choir was where I belonged.  We worked hard, and as a result, were one of the top choirs in the state.  I travelled to Italy my junior year with my choir family.  I got to sing in the Pantheon.  THE PANTHEON, PEOPLE!

What made us work so hard?  What made us want to be so good?  Our director.  It wasn't enough that we sing all the notes correctly.  When we started a new piece, we would look at the words.  Talk about what they meant.  Why the composer chose those words or that melody. What emotions the song was expressing.

"If you sing from your soul, you're never wrong."

I heard those words almost every day for four years.  And to me, that idea applies to more than singing. I'm not in any choirs anymore.  I don't sing anymore.  But those words still ring true.

Be true to yourself.  Be true to who you are.  Share your passion and what you love.  That's what I try to do in my life.  It's why I am so honest in my writing here.

I try to sing from my soul.



Thursday, November 1, 2012

NHBPM Day 1: Why I Write


This month, I'm participating in WEGO Health's National Health Blog Post Month (#NHBPM).  Which means I'm attempting to post every day during the month of November.  I'm hoping their prompts will be just what I need to get myself out of a blogging rut.

For more information or to sign up, see here.

Topic for Day 1: "Why I write about my health."

Why do I write about my health?

I write about my health for two reasons: to help myself and hopefully help other people.

When I first stumbled onto the Diabetes Online Community almost two years ago, I was completely and utterly lost.  Burnout had me tight in its grip, and I felt so alone.  I wasn't taking care of myself, and didn't know how to turn that around.

But then I started reading some blogs.  Joined Twitter.  And it completely changed my life.  That's not an exaggeration.  Reading other people's posts made me realize that I wasn't alone.  That living with diabetes is difficult for everyone.  That we all have our own struggles and triumphs.

Through the words and friendships of other people with diabetes, I was able to change.  One step at a time.  Today, I am in such a better place than I was two years ago.  Not only with my diabetes, but with my mental health.

Again, my friends online inspired me to seek help for my binge eating.  I don't think I would have had the courage to find a psychologist without reading stories from other people.  Their stories took the shame and fear away.

I started writing this blog to help myself.  This is a place where I can vent and share what's going on, and that helps me process things that are going on in my life.  But that's not why I keep writing.

I keep writing in the hopes that I might be able to help someone else as I have been helped.  That's why I share so much.  Not only about my diabetes, but also about my binge eating, and feelings of depression and anxiety.

Do I overshare?  Probably.  But I wouldn't be where I am today without the stories of other people.  No matter how we feel, we are never alone.


Wednesday, October 10, 2012

Reflections On Some Acronyms


TCOYD. YCDT.  Some acronyms from a few weekends ago.  I travelled to Des Moines to volunteer at the You Can Do This Project booth at the Taking Control of Your Diabetes conference.  And to see some friends.

Rachel, me, Kim, Sara, and C

This would be the only pic I have of the weekend.  Some of my friends REALLY like to take A LOT of pictures (cough, Kim, Sara, C, cough, cough) and so I tend to rely on them at these gatherings.

Friday night as people straggled in, we had dinner at Zombie Burger.  It was a really long wait, but totally worth it.  I highly recommend the garlic, bacon, and blue cheese fries.  They're pretty serious.

After staying up way too late talking to everyone, getting up Saturday morning was rough.  But Sara, Josh, and I made it to the convention center in time to hear Dr. Edelman's opening presentation.  The exhibit hall was closed during that session, but we snuck out a few minutes early to get back to the YCDT booth.

This was my third time working the booth.  And each time has been different.  One of the differences at TCOYD is that most of the people in attendance had Type 2 diabetes, where FFL and the JDRF walk were focused on Type 1. 

The response to the project was once again overwhelmingly positive, though there were quite a few little old ladies who said, "Oh, I don't have a computer."

And C came up with a great answer for them: "That's ok.  You still have something to share that can help someone else."

I love that!  Go C!

When I was telling people about the project, I would say that diabetes can be very frustrating and isolating.  More than once, after making that statement, people looked at me like they had never heard someone say that before.  "Yes, it is!" they emphatically agreed.

To me, that shows that we were needed.  That this project is needed, no matter what type of diabetes you have.  I really hope some of the people we met decide to make videos.  I'd love to see a larger Type 2 presence in YCDT.

At the end of the day, we packed up the booth and headed to dinner with everyone.  A big long table full of PWDs and a few Type Awesomes.  Gatherings like this are so good for my soul.  I feel so blessed to have been there.

The evening concluded with a walk through a spectacular sculpture garden downtown.  Sara, Kim, and Mike took some fabulous shots.  It really was beautiful.

Some of us got together again Sunday morning for brunch (pumpkin pancakes, FTW), and then it was time to head home.  Which is always the hardest part.  Some of these people I've met online have become real life, tried and true friends. 

And I can think of no better way to spend the day with these friends than working the YCDT booth.  When's the next event I can go to?  I'm ready!

Read Rachel's recap of TCOYD here, and check out the Words of Hope video:


Wednesday, October 3, 2012

Wordless Wednesday: Never Seen That Before


In 14 years of pumping, I've never seen THAT before.




And believe it or not, it didn't even hurt!


Monday, September 24, 2012

Art Time!


Today is Diabetes Art Day!


Created by the lovely Lee Ann Thill, Diabetes Art Day is a day to express yourself and your life with diabetes through art.

Last week was pretty crazy, and then I was at TCOYD all weekend (more on that later), so I wasn't sure that I'd have time to make any art before today.

But then Barb stepped in.  She commandeered a table at TCOYD Saturday for #DArtDay!  A huge piece of white paper covered the table, and she stopped people walking by, asking them to make some art.

So thanks to Barb, I have some art to share!


photo by Barb Campbell



photo by Barb Campbell

Break out the art supplies and share your life with diabetes!


Friday, September 21, 2012

Be A Light


Saturday will mark my third time volunteering at the You Can Do This Project booth at an event.  First was FFL, then the JDRF Omaha walk, and now the Taking Control of Your Diabetes (TCOYD) conference.

This is my first TCOYD event.  When I heard they were coming to Des Moines and how many DOC friends were planning on going, I knew I had to be there.  I AM SO EXCITED!!!  It will be so fantastic to see old friends, and meet some other friends for the first time in real life.

The event is this Saturday, September 22nd, in Des Moines, IA.  More info about the event can be found here.  If you're in the area, please consider coming to the conference and visiting us at the YCDT booth! 

T-shirt ready to go!


I love volunteering for YCDT.  There's something magical about standing at that booth, talking to people.  It seems like the mental/emotional side of living with diabetes is finally starting to be recognized, and this project gives people a place to talk about those things.  I hope that we're able to offer hope to people, and to show them that they aren't alone.  None of us are alone.

Like the YCDT tagline says: "Be a light in someone else's darkness."  That's why we're there.


Tuesday, September 18, 2012

Long Overdue



Hi there.

So...yeah...um...I know I have a blog.  I didn't forget.

I feel like I owe you guys an update.  I know I've been quiet lately.  So here we go.

It's been a rough few months.  I've been dealing with feelings of depression and anxiety that have gotten worse.  There are times when making it through the workday takes all of my energy.  I get home and have absolutely none left.  Not for tweeting or texting, let alone writing a blog post.  No energy for engaging with people.  Not every day is like this, but it's happening enough to call a pattern.

And what do I do with these feelings of depression and anxiety?  Feed them, of course.  Sigh.  That is my struggle.  For whatever reason, when I feel like these emotions are going to overwhelm me and I cannot deal with them, I turn to food.  I'm ashamed of this.  I've put back on the weight that I lost.  I wish with every fiber of my being that I could magically make this problem go away.  But I can't.  As desperately as I want a quick fix, I know there isn't one.  But sometimes I want it to go away so badly it hurts.

The eating leads, of course, to guilt.  And also high blood sugars.  It's a vicious cycle.  I hate it.

However, the last week or so has been much better.  I saw my therapist on Wednesday.  No matter what, I always leave her office feeling empowered.  We have a plan to hopefully get me feeling better.  Just having a plan helps.

One thing that she and I celebrated is my #sweatbetes.  Except for a couple weeks when I was sick, I've been keeping up with exercising.  No matter what the rest of the day is like, that's one thing I know I can do to help take care of myself.

And as much as I hate to admit it, exercising is helping my mood SO MUCH.  I still don't like it, but I feel so much better overall if I suck it up and do it.  It's also helping my blood sugars.  I've lowered my basals and insulin to carb ratio a bit.  I can tell my body's using the insulin more efficiently.

So that's what I'm trying to focus on: the positive.  The small things I can do to take care of myself.  Get that exercise in.  Stock the house with healthy food and not keep any junk around.  Keep working with my therapist.  Make myself interact with people, even when I don't feel like it.

My wonderful husband deserves a freaking medal.  I have been quite a mess of late.  And he is so supportive and encouraging.  His belief in me helps me believe in myself.

And I want to thank my friends.  You know who you are.  I'd never make it without you.

Please know that if you are struggling, you are not alone.  There are a lot of us struggling.  But we can do this.



Tuesday, September 11, 2012

This Close!



THIS CLOSE to a no hitter!  




After Sunday's graph, I couldn't be more thrilled!  Diabetes is a fickle beast. 


Monday, September 10, 2012

Wordless Monday


Maybe "A Few Choices Words Monday" would be more accurate:




What the fructose, diabetes?



Friday, September 7, 2012

Truly and Deeply Loved


"Hey! You're Ryan!" I squeal.

He stops and looks at me.  "Yes," he responds.

"I'm Jess," I say, reaching out to shake his hand.  "I read Meri's blog.  I'm so excited to meet you!"

"Thanks," he says with a smile.  His face is weary, and he looks exhausted.

"This is probably going to happen to you a lot this week.  There are a lot of people really excited to meet your family,"  I say.

He shakes his head, "Well, we'll see about that."

This was the scence when I met Ryan, his sister, and two of his sons in the hotel lobby at Friends For Life this summer.  It's a moment I know I will never forget.

Cancer claimed Ryan's life this past Sunday.  My heart has been heavy in my chest all week.  It aches for Meri and the boys, as well as the rest of their family.  I can't even imagine what they are going through right now.

Meri is one of my very favorite people in the entire world.  I met Meri on Juvenation, which was my first foray into the DOC.  Then I found her blog.  And then I started blogging.  Looking back through old posts, any time that I was struggling or having a bad day, there is a blog comment from Meri, ever the encourager.  Ever the cheerleader.

Meeting Meri, Ryan, and the boys was truly the highlight of FFL for me.  After running into Ryan in the lobby, I kept my eyes peeled for Meri.  The next day, I saw her.  We hugged each other and squealed.  Another moment I won't forget.

All week, I've been trying to figure out what I wanted to say.  So many others have written beautiful, moving posts about Meri and Ryan.  They are an inspiration to many, and dearly loved by us all.

When I first heard that Ryan had passed away, I was in shock.  And immediately, I was twelve years old again.  My childhood best friend lost her father when we were twelve.  He also had brain tumors, like Ryan.

The day he died, my friend came and spent that night at my house.  It was a long time ago, so I can't remember much about it.  I do remember that we played games.  We laughed, and we cried.  I remember wanting to do something to help, but knowing that there was no way to fix this.

Just being there with her was doing something.  Letting her know she wasn't alone, and that she was loved.

So Meri, M, J, B, and L, please know that you are not alone.  Know that you are truly and deeply loved by so many people.  And though we can't be physically present, we are with you in spirit always.



If you would like to help Meri and the boys in this time of need, there is a fundraising page set up to help with expenses.  Even just $1 will help.  If you can contribute, please, please do.


Monday, August 27, 2012

Worth It


So I'm a little behind on my blogging.  Life has a way of doing that, I suppose.

Back on August 11th, I went to Omaha for their JDRF Walk.  Why?  To help Kim with the You Can Do This Project booth, of course!  Kim wrote about this a while ago.  See her post here.

How much do I love this project?  Enough to get up at 5am.  On a Saturday.  Ew.

But it was so totally and completely worth it!  The weather was beautiful, and we met so many amazing people.  And once again, the response to the project was fantastic!  Most people I talked to thought it was a great idea, and will hopefully take a look at some of the vlogs.  The bracelets were a hot ticket item too.

There was one woman I talked to that I don't think I will ever forget.  I was down at one of the pump company booths saying hi to a rep I knew.  A woman and her son walked up to the table.  I recognized her as someone Kim and I had talked to a few minutes ago at the YCDT booth.

She smiled and said hi, and starting talking to the pump rep.  The rep had some candy out on the table.  The boy picked up a small box of Nerds, and asked if he could have them.

"I don't think so, hon," said the mom.  "I don't know what the carb count is for those."

The pump rep then proceeded to dig through her things until she found the bag that the candy came in, nutrition labels and all.  Well done, pump rep!

The rep then asked the mom how long her son has had Type 1.

"He was diagnosed three weeks ago,"  she replied.  My stomach sank, and my heart hurt for her.

"You must be feeling so completely overwhelmed,"  I said.

"That's why we're here," she said.  "We're not walking.  We're here to talk to people at the booths and see the different pumps."

At this point, I excused myself as she talked to the pump rep and ran back to the YCDT table.  Thankfully, I had some blog cards in my purse, and Kim had some of hers as well.

I ran back over to the pump table.

"Sorry to interrupt," I said, "but here's Kim's card and mine.  Our email addresses are on them.   Please let us know if there's anything we can do."

She took the cards and smiled.

"And I really encourage you to check out the YCDT site.  There are videos made by other moms, and videos of kids that he can watch.  There's a whole community of people out there.  You're not alone."

"Thank you," she said.

I apologized again to the pump rep for interrupting and went back to the YCDT booth.  I haven't heard from this woman, but I hope things are going ok.  That's the closest encounter with a recent diagnosis that I've had in a long time.  And it's something I won't soon forget.

So to that mom and her sweet 7-year-old son, please know that you are being thought of, that you are loved, and that you are never alone.






Friday, August 24, 2012

Two Things

Two things.

In case you were wondering after yesterday's post, acetaminophen won.  My sensor bit the dust after a good run, and I decided to delay putting in a new sensor and take acetaminophen instead.

I'm a bit addicted to my CGM.  Ok, a lot addicted.  I wear a sensor 24/7.  As soon as a sensor dies, I put a new one in.  I can count the number of CGM breaks I've taken in the last two years on one hand.

Sometimes I have to remind myself that I lived with diabetes for 17 years without a CGM.  And I did ok.  I have to listen to my body and trust my instincts.

Now, I'm off to the doctor to make sure I don't have strep.  Yay?

                                                                                                                                       

Completely unrelated, I've been updating my Diagnosed As Adults list.  When a local friend was diagnosed with T1, I was trying to find other people diagnosed with T1 or LADA as adults for her to connect with.  I got so many names, I decided to share them!

If you were diagnosed as an adult and blog or have Twitter, please comment or email me so I can add you to the list.  The more, the merrier!

Have a great weekend!



Thursday, August 23, 2012

Cold Medicine Conundrum

Well, the school year is officially underway.  And as part of that yearly tradition, I've caught my first bug.  Today, I do not plan on getting up from the couch except to refill my water and/or tea and get more tissues.  But I digress.

It started with a small tickle in my throat, and the thought, "Uh oh.  I hope I'm not getting sick."

But my blood sugars decided to remove any doubt.  "Hey!  Guess what!  You're real people sick!"

Gee, thanks.



I LOVE my CGM.  Especially when I'm sick.  It allows me to be more aggressive in treating highs without worrying so much about going low.  The CGM helps me see if I've been too agressive.  Temp basal, FTW!

This is the first time I've been sick since switching from Medtronic to Dexcom.  Why is this significant, you ask?

I've discovered something I left out of my comparison post: pain relievers.  My first choice is typically acetaminophen.  I reached into the cabinet and got out the bottle, and then froze.

Crap.  I can't take this.  I mean I could, but then I'll loose my CGM.  I'm not sure about the science behind why, but acetaminophen throws off the accuracy of the Dexcom.  I've never experienced it myself, but heard from enough other people that I'm not willing to try it.

With the Medtronic CGM, you can take acetaminophen.  It doesn't affect the accuracy at all.

Have you ever looked at all the cold meds?  Almost everything has acetaminophen in it.  Boo.  So, I'll be sticking with NSAIDS for now, because I'm not willing to loose my CGM.

Dear Dexcom, it would be lovely if you could figure out a way to protect your sensor from the effects of acetaminophen.  NSAIDS are not nice to my gut, and I do not prefer them.

In the grand scheme of things, is it that big of a deal?  Probably not.  But I feel like crap right now and am extremely grumpy, so I'm rather annoyed.  Sometimes the devil is in the details.



Friday, August 17, 2012

Making It Their Own

There are many things about the Diabetes Online Community that I love.

But this week, one thing in particular has been making me #furiouslyhappy.

The DSMA twitter chat has been going on for a couple years now.  The chat happens Wednesdays at 9pm EST.  Use #dsma to participate.

This chat is one of the highlights in my week.  I have met so very many wonderful people from all over the world, and learned a lot.  It's just so fantastically crazy and fast and fun!  And sometimes we even break twitter.  We're cool like that.

Because of the timing of the chat, it can be challenging for people from countries outside the US to participate.  Oh hey, people in London, you don't want to get up at 2am and chat?  No?  Yeah, I wouldn't do it either.

But now, there are other diabetes-centered twitter chats happening.  The DOC in Australia now has their own twitter handle (@OzDiabetesOC) and their own chat, Tuesday at 8:30pm AEST (#OzDOC).

Next, the UK got in on the action with @theGBDOC.  Their next chat will be Wednesday, August 22nd at 9pm London Time (#GBDOC).

And just when I thought it couldn't get any better, I saw this twitter handle pop up: @theCANDOC.  Hey there, Canada! Their first chat will be Monday at 8pm EST (#CANDOC).



I am so, so very excited to see people taking the fabulous twitter magic that Cherise found and making it their own.  I know that the global DOC will be able to reach even more people now.  And I hope to see more chats pop up in more countries.

Group hug, everyone!



Tuesday, August 14, 2012

Nineteen

Nineteen years ago yesterday, I was diagnosed with Type 1 Diabetes.  Friday, August 13th, 1993.

Last year, I wrote about the memories of my diagnosis.  I also wrote about getting cupcakes with my family to celebrate.  And my mom shared her thoughts and memories.

This year, I planned on celebrating as well.  But then Friday looked like this:



And Saturday looked like this:



It didn't matter how much I bolused, with multiple sets, syringes, and new insulin, those blood sugars would not budge for hours.

Saturday night, I had a bit of a meltdown.  Enough already!  I balled my eyes out, and called my mom. I hate this stupid disease!  I don't want it anymore.  I'm done!

My sugars are back down to earth now, but I was still dreading yesterday.  I didn't want to celebrate, I didn't want to acknowledge my diaversary at all.

I was so very angry at diabetes, and wanted to ignore it.  But someone (ahem, Sara) tweeted that it was my diaversary.  And my twitter stream was flooded with well wishes and congratulations.

And you know what?  It helped.  It helped a lot.  Because I knew these weren't empty wishes.  They were sincere, from people who know exactly what it feels like.  Who've felt the anger and frustration that I was feeling. People who get it.  And that means a lot.

My mom also got me a diaversary card.  Well, a congratulations card, since they don't make "happy diaversary" cards.  And I went to dinner with Scott, Babs, Bob, and Charli.  More people who get it.

So thank you, DOC, for reminding me what's important.  That I am never alone.  And that diabetes doesn't get to steal my joy.


Thursday, August 2, 2012

I Hate Exercise

I hate exercise.

I don't like to be hot.  I don't like to sweat.  I've never played any sports, or been athletic in any form.

But I know that in order to be healthy, I need to exercise.  Ugh.

When the weather's nice, I go for walks with my mom.  But the excessive heat this summer has made that impossible.  But I need to get some exercise, for the sake of my blood sugars and my sanity.  I've belonged to a gym before, but I never went.  So I don't want to join one again.

I decided to take a risk.  At the recommendation of some fellow DOC ladies on twitter, I (gulp) purchased Jillian Michaels' 30 Day Shred DVD.

Double gulp.

Day 1, I thought I was going to die.  The next day, I was popping ibuprofen and could barely move.  Everything hurt.

Day 2, thought I was going to die.  Everything still hurt.

Day 3.  Hey, maybe I'm not going to die.  Only some things hurt.

Day 4.  Wow, I just did the whole 20 minutes without stopping.  And I'm only a little sore.

I didn't expect to feel stronger after only four days.  But I am.  My muscles are already getting stronger. Getting through the routine is still really difficult.  And I am so horribly out of shape.

But I think I can keep up with this.  Losing weight is not my goal.  Exercise is.



I can do this.

Please, please, please check with your doctor before beginning any exercise program!  I am not a medical professional, nor am I endorsing everything Jillian Michaels does.  This DVD is helping me meet my own personal exercise goals.  And it's hard!  Again, please check with your doctor before exercising.  Thanks!

Tuesday, July 31, 2012

Sentimental

My insulin pump lives a hard life.

It gets dropped, bounced, bonked, yanked, bumped, and knocked around quite a bit.  What would you expect for something that lives 24/7 on super uncoordinated me?

Thank goodness for warrantees, since I seem to go through a pump every year or two.  In fourteen years of pumping, I've only had a few pumps all out die on me.  Mostly they develop small cracks, at which point Medtronic has told me to call and get them replaced.

Last week I noticed two small cracks on my pump, up near the battery cap.  And since the pump can't function without proper battery connection, I didn't want to mess around.  It was still working fine, and I wanted to keep it that way.

Cracks right where the battery cap meets the pump.

Guess it's that time again.  Call Medtronic customer service, attempt to explain the size and location of the crack over the phone, answer a few more questions, and a replacement pump is on the way.

I called on Sunday evening, so the replacement pump arrived Tuesday morning.

New pump! Shiny! 

 Time to put all my settings in the new pump.  Then we're up and running!

Matching pumps! Minus the scratches and cracks.

And then the old pump goes back to Medtronic.  This one made it through a year and a half of loyal service.  I get a bit sentimental when it comes to my diabetes technology.


So thanks, pump, for giving me my insulin and keeping me alive for the last year and a half.  We've had a good run.  Goodbye old friend.




Wednesday, July 25, 2012

BEAUTIFUL!

There are a lot of reasons I LOVE the Diabetes Online Community.  This is one of them.

A little over 24 hours ago, a friend posted that her T1D daughter needed to get glasses.  And that she was worried about not being pretty with her glasses and insulin pump.

Sara, Kim, and I decided we needed to tell her the truth.  That she's BEAUTIFUL!!!!!

I've had diabetes for almost 19 years, and got glasses about six months after diagnosis.  I got my first pump in 1998.  And I haven't gone a day without my accessories since.



There are lots of people who rock both dysfunctional pancreai and glasses.  So we asked them for help!  In less than 24 hours, we had enough pictures and videos of people for Sara to make a video out of them!



The fact that so many people jumped right in, to help someone they don't even know, makes my heart sing.  I love the DOC.  Thanks team.

We're all beautiful.



A Difficult Decision


If you follow me on twitter, you may have noticed that my pictures of my CGM graphs look a little different lately.

I've been using Medtronic's Continuous Glucose Monitoring for about a year and a half.  And it's been a godsend.  I still have diabetes and days that don't go so well, but having a CGM has transformed the way I care for myself.


But after all this time on the Medtronic system, I've recently switched to Dexcom.  But it's not a switch I'm thrilled about making.  And a switch that I hope is only temporary.  Let me explain.

The current Medtronic sensor, the Sof-sensor, hurts.  Insertion hurts a whole hell of a lot.  As my friend Martin says, that needle is an effing harpoon.



And that's why I switched.  Bottom line.  I just couldn't do it anymore.  I know this makes me sound like a whiny baby, but it's the truth.  I just can't handle that giant needle anymore.  The Dexcom hurts a lot less to insert.  It's not painless by any means, but certainly way better.

I did a trial for about 10 days of the Dexcom system before I decided to get it.  And for several of those days, I also wore the Medtronic sensor, which gave me some time to compare the two.  There are definitely pros and cons to each system.  So here we go.

Medtronic


Pros:
  • Insulin pump/CGM integrated (one device)
  • Access to calibration history.  You can go in and see all calibrations going back several days.  Includes both the time of calibration and the bg number entered.
  • Ability to scroll back and see previous CGM readings up to 24 hours ago.
  • Has predictive alerts.  Meaning that I can set the pump to alert me when it predicts I'll go low or high within a certain amount of time.  For example, I can set it to alert me 15 minutes before the CGM thinks I'll be low.
  • Can set varying high and low thresholds.  My high threshold was set at 180 during the day, and 200 overnight.
  • Access to sensor alert history allows you to see all previous alarms and alerts.
  • The alarm snooze settings are easy to customize.  My low alarm snooze was 20 minutes, and my high alarm was set at the max, three hours.
  • You can cycle thru all graphs with up arrow over and over.  It goes from 3 to 6 to 12 to 24 and back to 3 again, all using the up arrow.  You don't have to scroll back down again.
  • Sensor/transmitter combo is lower profile.  I don't catch it on stuff like I do the Dexcom sensor/transmitter.
  • CGM settings are overall more customizable.


Cons:
  • HUGE insertion needle!  Ouch!
  • Three day sensor (though I always wore it six. Shhh!).
  • Complicated insertion.  Can be challenging to hit the correct angle, tends to bleed a lot, and did I mention it HURTS??!!?
  • Only supposed to calibrate when blood sugar is stable, otherwise it throws things off.
  • Have to wait for sensor to "wet" after insertion before connecting transmitter.  This can take anywhere from 15 minutes to a couple hours.

Dexcom


Pros:
  • Insertion not very painful and significantly easier.
  • No wetting time for sensor.  You can immediately hook up the transmitter.
  • Seven day sensor.  I've made it to almost two weeks (again, not medial advice.  Sensor is only FDA approved for seven days).
  • Dexcom automatically pulls the number off the graph when you calibrate, so you start from there.  Medtronic starts at 90 every time.
  • Sensor and transmitter adhesive is much more secure without additional tape.  The Medtronic sensor flops around unless you tape it down. 
  • Easy to see CGM graph when you have your pump in your bra.  I don't have to reach down my dress as often.
  • Keeps up better when blood sugar is either skyrocketing or plummeting very quickly.


Cons:
  • Having to carry around the receiver is ANNOYING!  I'm gonna lose that thing, I just know it.
  • Hovering around the high or low threshold?  The Dexcom is going to alarm EVERY SINGLE TIME you cross the line, instead of alarming once and then not again until the snooze is over.  Medtronic won't repeat the alarm until the snooze period ends.  So no matter how many times I go over/under 180, that high alarm will only go off once every three hours.  Much less annoying.
  • You have no access to data on the device itself.  Now, I've not downloaded data and looked at anything on the computer, but I miss having all that info at my fingertips.  Previous CGM readings, calibration and alert history, when the next calibration is due, and the age of the sensor. The Dexcom receiver doesn't give me any of this information.
  • No predictive alerts.
  • When you restart the sensor, you have to wait the initial two hours again for any data.  With Medtronic CGM, there's data immediately after you restart.

Clearly, there are advantages and disadvantages to both systems.  One thing that isn't really different is the overall accuracy.  I don't find the Dexcom to be more accurate than the Medtronic.  Usually it does keep up with wild swings a bit better, but not always.



So for now, I'm using the Dexcom.  And trying not to leave the receiver anywhere.  But like I said, I'm hoping this is just a temporary switch.  Because this isn't what I really want.

What do I want?  Short of an artificial pancreas, I want the Medtronic Enlite sensor.  I had the good fortune to see one in action at the Medtronic Diabetes Advocates Forum back in March.  Words cannot describe how badly I want this.  Insertion looks so much less painful.  And the sensor is 90 degrees--no more funny angles.  And it's a six day sensor.  And more accurate.  I could go on and on...

The Enlite is what I'm waiting for.  And unless it doesn't deliver as promised, I plan on switching back to Medtronic as soon as it's FDA approved and available in the US.  Hopefully my MiniLink transmitter will last a while longer so I won't have to pay for a new one.

Overall, in my opinion, the Medtronic system is superior to the Dexcom system.  Now I know that Dexcom has their next generation sensor and receiver in the FDA channels right now too.  And I don't know much about either.

I am a firm believer that people use whatever diabetes technology works best for them.  Just because I like the Medtronic system better doesn't mean I think that everyone needs to use it.  Use whatever works best for you.  Your diabetes (and diabetes technology) may vary.

But what I want is to go back to my integrated Medtronic system, with the Enlite sensor.  So dear FDA, please hurry.  Thanks.


Please remember that I am not a doctor, and everything here are my own thoughts and opinions, and are not intended as medical advice.  Thanks!