Our D-history:

My daughter, *Rosie, was five years old when she was diagnosed on September 19, 2008, with Type I Diabetes. We started out on MDI, but in October 2010 we switched to a pump. We also added a Dexcom CGM in May of 2011. In February 2014 we changed to the Medtronic Enlite system- a pump and CGM all in one.

*Rosie is not her real name... I let her pick her own pseudonym for the blog!

Friday, November 30, 2012

End of NHBPM

Whew!  It's over.  I set a goal at the beginning of November to try and blog daily in honor of Diabetes Awareness Month and WEGO Health's National Blog Post Month.  

I tried, really, but I still missed several days, because, well.... life happens.  Family and work and holiday stuff and school activities- you know how it is!   A few nights I'd be just drifting off to sleep when it would hit me that I hadn't posted that day, but I went ahead and chose sleep over getting back up and blogging.  You fellow d-parents will understand-- sleep is more important!

So I missed a few days, but I'm OK with that... after all, I blogged more this month than I have any other time since starting The Sugar Sharks.   I learn so much from other d-blogs and I appreciate this sense of community.   I'm proud to be a member of the DOC!
  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Wednesday, November 28, 2012

Snake Oil

WEGO Health Prompt: Day 28 – Write about how you deal with... snake oil

Snake oil.  My least favorite thing to deal with when discussing diabetes.  If one more well-meaning person tells me I should put Rosie on Cinnamon or Blue Algae or any other "miracle cure", I'm going to scream! 

OK, OK, I won't really scream... but I'd like to.   I am generally pretty good about responding with a short version of the difference in Type I and Type II, and how those things might help control the blood sugars of someone with Type II, but they can't help Rosie because her pancreas is dead. 

Of course there are those who want to argue-- it's happened to me more than once-- and I generally have to walk away at that point.  It's not worth me getting upset to try and talk to someone who is clearly not educated/ willing to learn on the subject.

. I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Sunday, November 25, 2012

Evolving D-Goals

WEGO Blog Prompt for Day 25 –How have your goals as a patient / advocate / person evolved?

Our goals for Rosie's care have definitely evolved over the years since her diagnosis: 
  • First, our goal was just to keep her alive.  We were scared to death that one wrong move might have devastating affects.  That lasted for the first six months or so after diagnosis.
  • Next, our goals focused around her A1C and hitting a "magic" number... this probably lasted for the next year or two.  We made ourselves crazy trying to weigh and account for every single bite of food and every minute of activity.
  • Around this same time we started helping Rosie learn to do some things to help take care of herself... not everything, of course, but little things, here and there.   She started doing her finger pokes, then later she could inject her own insulin shots if an adult drew them up.   We walk a fine line between wanting to teach Rosie the skills she will need, and yet wanting to protect her right to just be a kid while she still can.
  • Now? Our goals are more about quality of life, and learning to live with this monster for the long term.   We learned that it's not really just about the A1C... it's important, but so are other aspects of her care.  We've learned that we can SWAG some boluses and things work out fine.    
  • We're all still learning, still growing, but I'd say that our main goal is to keep diabetes as an important part of our lives, without letting it BE our lives.
And personally... my goal is to be an advocate whenever and wherever I can.  I take opportunities as they come along to educate and inform people.  
I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Friday, November 23, 2012

Thanksgiving Numbers

This year, Thanksgiving dinner played nice with Rosie's numbers.  I had her pre-bolus 50 carbs as we sat down, and planned to figure out the rest after we ate.   She ate all of her favorite high-carb foods-- stuffing, mashed potatoes, pie. 

We checked her Dex and saw that she was only 131... confirmed with a finger stick that was within a few points.   We decided to wait a bit, and within the hour she was actually going down, instead of up as we expected.  So... we didn't bolus any additional carbs.  

She hit 95 before she finally started going back up a little.  She was in the mid-100's at bedtime.   She didn't really spike until around 3am, when she hit 371... but I'm not sure that was Thanksgiving-related, as she's been going high at that time of night recently anyway.

A Thanksgiving feast with no crazy blood sugars-- who knew it was possible?

  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Thursday, November 22, 2012

Thankful


 Actually, I'm always thankful for insulin, but the cartoon is still cute.  Today I'm also thankful for Rosie's pump, which makes it much easier to SWAG-bolus for Thanksgiving dinner!
. I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Monday, November 19, 2012

Tired of Fighting

Rosie had a minor surgery last Tuesday.  Last Wednesday we received a letter stating that insurance was denying our claim... yep, one day AFTER it was done.  Nevermind that it was preapproved at 100%, or that multiple people confirmed that.  We still have to fight and stress and pray that they will honor their prior commitment to pay.

I don't claim to know how to fix our healthcare system... but I know that I'm sick and tired of fighting it all the time!

  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Sunday, November 18, 2012

Mc Carbs

Sundays are what my kids refer to as "tradition day".  We go to church in the morning, but that's not what they're talking about.  The tradition they are referring to is that I work on Sunday evenings, they go with their dad to visit his grandma, and they all eat McDonald's at her house for supper.  They enjoy it and look forward to it all week.

Since Rosie is now tracking her own carbs, this morning she asked me to look up the Mc nutrition information.   Apparently she's going to change up her usual order a bit.  ;)   As I type she's carefully calculating what she can order tonight if she has a snack this afternoon. 

Hat tip to McDonald's here.... their nutrition page is easy to find, easy to read, and there's a PDF with all the info we need available from their website.  I'm not a huge fan of Mc food myself, but I do appreciate how easy they make it to figure out the carbs for Rosie's "tradition day"!
  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Saturday, November 17, 2012

Food Logs

Rosie and I are keeping food journals.  Back when she was first diagnosed, we religiously logged every bite of food, every carb count, every drop of insulin given, all day every day. Rosie was only 5, so we as parents took care of the detailed log book.   But since she's been on a pump, we've stopped keeping a written log book.  The pump logs the carb counts, blood sugar readings, and insulin doses for us. It's easy to download her pump on the computer and have that information available when we need it.

Rosie is getting old enough now to make some of her own food choices, and her choices on the days she buys lunch at school, or when she chooses snacks, are generally pretty high-carb. After her endo appointment last week, we talked with the Dietician, who suggested that Rosie cut her carbs and increase her protein.   This was hard for me to listen to, because the meals that I fix for her ARE high protein and mostly low carb... I felt like I was doing something wrong.  In reality, though, The Dietician was seeing some patterns and is trying to help Rosie learn to make good choices on her own.

On the way home we talked about it, and decided that keeping a food log would be helpful for Rosie to see exactly what her choices add up to in a day.  I was telling her that they have been very helpful for me in the past.  We decided that we would do it together-- each day we log our foods and our carb counts into little notebooks.  Rosie is starting to notice things.... like a high carb breakfast means that she can't also choose a high carb snack in the afternoon if she wants to hit her target range for the day.  She's starting to plan ahead, knowing that if I'm making a favorite for supper (ie: homemade pizza), she needs to keep her carbs pretty low the rest of the day.   She's looking at it like a fun game to see what she can eat and still be in her target range.

It's hit me that this is yet another transition in our life with diabetes.  When she was little, we did all the meal planning and food choices for her.  I have always done her carb counts.   Now, at the ripe old age of 9, she's starting to take on some of that responsibility for herself.  I am a little sad that she has to learn this so young, but at the same time, I am so very proud of her.  
. I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Friday, November 16, 2012

Routine

Rosie went to bed an hour ago, then came back downstairs half an hour later because she felt low.  She was 95 and dropping.  We decided on a snack-sized Skittles pack (post-Halloween lows have extra treatment choices, LOL), she ate it and went back to bed, over and done in minutes.

I guess it's good, the routine-ness of it all.  Sometimes I barely think about it- we just deal with the numbers and go. 

There was a time when I would have stressed and worried over what to do with that 95... after all, it's not technically a low.  We could just monitor it.  We could reduce her basal rate.  We could suspend her pump.  We could try a partial dose of carbs, or carbs plus protein.

But over the years, we've learned that if Rosie is dropping fast enough that she can feel it, even if she's not technically low yet, we need to treat with fast-acting carbs, the same as if she was already low.   Would that work for everyone?  No, of course not, but it works for us.

I remember when I didn't think anything about diabetes would ever become routine- it was all so new and so scary.  There are still stubborn highs and scary lows, and there always will be.  But somehow I take comfort in knowing that we can deal with this scary monster as a part of our normal daily routine.
  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Thursday, November 15, 2012

test post

This is just a test... I'm trying to blog from my phone.  :)
  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Wednesday, November 14, 2012

Post-Op Update

Rosie's surgical procedure went very well yesterday.  We had to be there at 6:30am, and we were home by 11am.  We couldn't have asked for nicer nurses- we are blessed to have such a great childrens' hospital nearby!

Rosie's blood sugar was 145 right before surgery... amazing, considering all the morning highs she's had lately.  After surgery she was 209, and she stayed in the lower-to-mid 200's for a couple of hours.... then her numbers really shot up.  By midnight she was 600, despite having been on a 200% temp basal for a couple of hours.  It was crazy.  I changed her site to a tummy site (she seems to get better numbers with those) and by morning she was back down in the lower 200's with no ketones.  Whew!

Today she's been fine.  Still running in the lower 200's, which obviously is high, but nothing that's really worrying us.  We're treating the numbers and moving on, just like any other day.
  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Tuesday, November 13, 2012

Surgery

Rosie is having a minor surgery today that is not related to diabetes.

I have no idea what the next few days will be like numbers-wise... does anesthesia make someone go high? Low?  I have no idea.

Her procedure is scheduled for this morning. It should be a minor, outpatient procedure with light anesthesia.   I'd appreciate your prayers that all goes well!

 

Monday, November 12, 2012

Diabetes Ridiculous-ness

WEGO prompt for today: Day 12 – Monday, Nov. 12: Call BS on something. What’s something that is just ridiculous? 

I know it's old news, but the most ridiculous thing I've ever heard related to Type I was Halle Berry's claim that she "weaned herself off of insulin" and her self-proclaimed jump from Type I to Type II.  Not to sound callus, but if she had truly had Type I, she would have died without insulin.  Chances are that she was either misdiagnosed or misinformed.  

The story still comes up from time to time.  I'm sure she didn't mean to cause such waves in the Diabetes community. Next time, though, I wish she would think carefully before making such wild claims.

. I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Sunday, November 11, 2012

Should you share on Facebook?

Oops.  I had some prewritten posts up my sleeve to help me with the post-every-day thing, but those only help if you actually schedule them to post.  So, yeah, I missed posting on the 10th.  WEGO says we get two "Get out of post" days in the month... looks like I just used one of mine!

Yesterday's WEGO Health prompt:  Should people post about their (or loved ones) health on Facebook? Why/why not?

Ugh.  Sticky question. First of all, you have to know that my Facebook account is not linked with my blogs, it's not linked with Twitter-- it's just for people I actually know, or at least used to know, in real life.  There are very few exceptions to that rule on my friends list- two are boyfriends of my friends, one is a friend of a friend and has a child just dx with Type I Diabetes, and one is a professional contact.  That's pretty much it, though... everyone else I really know.

Back to the question: I think generalities are fine when it's just everyday stuff.  "Rosie had a great check-up today".  Or, "Stupid diabetes... Rosie's been high all day!"... a post to be seen by friends only.  The end. 

I have seen people go too far, IMHO.  One friend was posting very intimate details of her friend's sick family member.  I felt uncomfortable reading those when they'd pop up in my feed... I didn't know the sick person, and I'm not sure how they would feel about their personal life being discussed by strangers on Facebook.

. I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Friday, November 9, 2012

D-blog Day: November 9th

Today is D-blog Day.  Creator Gina Capone says, "D-blog Day was started on November 9th 2005 during Diabetes Awareness Month, to help unite diabetes bloggers and create awareness about diabetes".

This year’s topic is: 6 things you want people to know about diabetes.

Here's my list:
  • The term "diabetes" encompasses a lot of different people, with different struggles and challenges.  A Type I child is fighting a different battle than a Type II adult, but both deserve our respect and support.
  • Diabetes doesn't care if you're rushing to catch the bus, in the middle of a math test, or enjoying a big party... it demands immediate attention.   
  • Diabetics rarely need YOU to tell them what they should or should not be eating. Being a part of the "diabetes police" does not endear you to anyone.  Most diabetics, like their non-diabetic friends, can eat anything they want in moderation.  
  • Not inviting my diabetic child to your house because you are not comfortable being responsible for her care is fine.  Having your child to tell mine that she won't ever be invited over for a play date for that reason is NOT ok... it hurts her feelings.
  • Store-bought "sugar free" treats often have more carbs than regular versions.   Ask the diabetic person (or their parent) which version is better for their particular diabetes regimen.
  • Diabetics can find a ton of support online... as a d-parent, this helps keep me sane!  :)

Share your own "6 things" list and link up HERE!

. I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Thursday, November 8, 2012

A Shocking D-Death

A few days ago someone I have known for many years through work passed away.  That alone was a shock, as he was a younger man, I'd guess in his late 40's or so.  But the real shock?  Rumor has it that the cause of his death was that he, and Type II Diabetic, had not been taking his insulin for the last two years....because he could not afford it. 

He and I had many conversations about diabetes.  We talked about the differences in his Type II and my daughter's Type I.   We compared notes on treatments, carb counting, and needle sizes. He occasionally mentioned his limited heath insurance plan through his job, but he never once mentioned to me that he was no longer taking his insulin.

I am so saddened by this.  I would have helped him if I'd known.  I work in a nursing home, with connections to doctors, hospitals, and pharmacies.  I have a diabetic child and plenty of diabetic contacts in various places.  I have the internet.   I would have found a way to get him the insulin he needed if he had just let me know there was a problem.

We don't have the best insurance, but I am so very thankful that we can afford Rosie's insulin.  I'm praying tonight for all those who can't.



  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Wednesday, November 7, 2012

Wordless Wednesday 11/7


image found on Pinterest
unfortunately without a link to the original source

. I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Tuesday, November 6, 2012

Tuesday. That's all I've got, title-wise. :)

Nothing diabetes-related, but it has been one crazy busy day in my world, starting at 5am.  I'm normally excited to watch election results, but tonight I'm barely keeping my eyes open.   This is going to have to count as my daily post... meanwhile I'll be praying for good election results and an uneventful night d-wise!

  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Monday, November 5, 2012

Does politics affect diabetes?

WEGO Health's NHBPM prompt: Health Activist Soapbox

Of course it does.  Government officials have the power to affect funding for research/ treatment/ education, to make or change laws regarding the rights of diabetics, to legislate stem cell research, and more. 

There are two things that can really get me fired up: diabetes and politics.   I generally keep my politic views  away from this blog, but in real life, it seems I'm talking politics with someone every day.  It helps that I live in THE important swing state... Ohio.   You can click over to my political rants posts  on my other blog, HERE.   While I'm not shy in my support of Mitt Romney, for the most part, I don't feel that this blog is the appropriate place to discuss those views.

Mike H. wrote a great article a few weeks ago at Diabetes Mine about things the diabetic community should be aware of when choosing a candidate.   I couldn't articulate this nearly as well as he did, so let me just refer you to his article, HERE.

No matter what your views or party, go out and VOTE tomorrow! 

 I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Sunday, November 4, 2012

Today's WEGO Health NHBPM prompt:  Disclosure post. How did you decide what to share? What do/don’t you share?

Since I write about life with my 9 year-old daughter's Type I Diabetes, I don't post anything that I think might one day embarrass her.  I don't share private details about her-- I keep things kind of general.  I don't ever want her to look back at this blog and feel ashamed or feel like I used her personal stories for my own reasons. 

I also don't share photos of my children... here, or on my other blog.  First of all, my husband is in law enforcement, and we know for a fact that someone was trying to find us online a few years ago.  Secondly, I knew of someone who found out that her children's photos had been copied and used on an "adult" website.  No way I'm risking that!

  I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Saturday, November 3, 2012

Big Blue Test

 WEGO Health NHBPM prompt: Day 3: “I don’t know about this, but I’d like to.”

Are you doing the Big Blue Test this year?   Test, get active, test again, and report your numbers- that's all there is to it.  

You don't have to be diabetic to participate in this.   I don't know how exercise affects MY blood sugar... I'm not diabetic... but I'm interested to see the affect it has.  I think I'll have Rosie and I both do the Big Blue Test in the coming week when we're at the YMCA.

If 20,000 tests are logged, then $100,000 will be donated to diabetes organizations to provide supplies and services to people in need.   How cool is that?
I'm posting daily in November in honor of Diabetes Awareness Month and the WEGO Health's National Health Blog Post Month. #NHBPM

Friday, November 2, 2012

Six Degrees of a "Rare" Disease

The WEGO Health Prompt for today: Write about the weirdest thing about your health.
I often read about how "rare" Type I is... how so few people have it, and the majority are Type II.

Apparently I live in some kind of black hole where that doesn't apply.  Let me count the number of Type I Diabetics we know in real life:
  • our friend and across-the-street neighbor, age 5, diagnosed two years after Rosie
  • my son's Taekwondo instructor, who was diagnosed during the time DS was in his class
  • a friend from high school's son, the same age as Rosie
  • an older boy at Rosie's school, whose mom I just met last week
  • a girl in our city whom Rosie met at D-camp... camp is an hour and a half away
  • a friend that I went to high school and college with, diagnosed in college
  • a child (now young adult) that my mother-in-law used to babysit... we knew her long before Rosie was diagnosed
  • one former resident at work (nursing home)
You'll notice that we only met ONE of those people at a diabetic-related event... the rest were just coincidence. 

And a couple more locals that I know of, but don't really know personally:
  • another child who just moved into our neighborhood-- I haven't met this child or her family yet myself, but my neighbor has
  • another child in our city's school system with the same (real) first name as my daughter
  • a child in our neighbor's son's school
  • a random conversation with a sample lady at Sam's Club, asking what Rosie's Dex was, led to her telling us about her Type I husband who is now in his 60's and recently switched to a pump
  • a child we bumped into at the YMCA who was carrying the same diabetes bag that Rosie used to have... I tried to strike up a conversation with the mom, but she was clearly not interested
And that doesn't even count the number of D-families that I've connected with on the DOC.   One is within half an hour of us, but we haven't met up in real life yet.

It certainly doesn't seem like Type I is all that "rare" to me!
 

Thursday, November 1, 2012

T1 Day and Diabetes Awareness Month

November is "Diabetes Awareness Month".  Every time I hear that, the snarky little voice in my head reminds me that we are VERY aware of diabetes.

It's also T1 Day, sponsored by JDRF.   This is the second annual T1 Day, a day set aside to make the world aware of T1 and what life is like with this disease.   One of the ways they are doing this is by offering everyone the chance to participate in their free "Type 1 for a Day" program, which will send text messages to the participant throughout the day about what their (pretend) blood sugars are and how Type 1 might just pop up and affect what they are doing right that minute.   I think it's a great idea, and I hope lots of people sign up to try it!

In honor of this month, I'm going to attempt to post something each and every day in November.  No promises... life happens... but I'm going to challenge myself to do it.  I'd love to have you join me!