Justin's Story

Friday, September 23, 2016

It's been a while

Hi everyone!

It's been a while since I've blogged.  Hope everyone had a great summer!  
We sure did.  It went by so fast, as always :)

He celebrated his 11th birthday at the end of May, we surprised him with a ride in a race car at Daytona International Speedway.  Needless to say that he absolutely LOVED it!! 

Justin went to sleep away diabetes camp again this year.  He had a great time, he was bunking with 2 of his local friends.  He also made a couple of friends while he was there.  They had some new things this year that he was really excited about.  A slide into the lake and a rope course.  He said both were lots of fun.  We redid Justins room while he was away, and it turned out great!  He was so excited when we got home and he seen it!  

               
Super fun week for these guys!! 



Justins Room Remodel :)
                                          
                                             Before:

                                     After:


We took him to the Kennedy Space Center for the first time, that place was amazing!  We will definitely go back, as there were things we didn't get to see.  Justin wants to be the first astronaut with T1D in space.......I told him I want him to do whatever his heart desires, but I'd prefer he stay in this atmosphere LOL.



We also went to Sanibel Island, the weather was lousy while we were there but we made the best of it and found some really cool shells.  



He also participated in a kids architect program at the Norton Museum, it was a month long program and the kids started from drawing their museum design to actually building a model of it.  They were on display at the museum during their "Art after dark" event.  We were so proud of him!
Showing off his Pokemon museum model :)
Diabetes has been there for everything, playing nicely most of the time.  His most recent endo visit was great, she made some adjustments, and his A1C went down since last time and it was a great number last time!  I never share that number on social media, diabetes is hard enough and its so easy to get caught up comparing and feeling like your not doing enough.  Everyone follows different diets or plans and doses different and does what works for them.  So for us and how we handle diabetes it's a great number!

The month prior to that visit was pretty rough with crazy high numbers, randomly, no explanation.  So I figured puberty must be peeking around the corner.  Dr. said not quite yet...Whew! LOL  She told us numbers usually will get higher overnight/very early morning and after breakfast.  So she adjusted some basals and that seems to have helped with the highs.  I went from feeling like I knew what I was doing to feeling like a total newbie again, I'm feeling better about it again though.  Its just frustrating and your nervous to bump up the dose too much.  

Justin has also enjoyed writing his Beyond Type 1 penpal in Colorado.  He sent him a postcard from the Kennedy Space Center. Since he's into space too :) Maybe they can space travel together!

Enjoy the pics of our summer, and Justins awesome new pump decals from Pump Peelz  He totally has Pokemon-itis HaHa!







   

Friday, May 20, 2016

Tips and Tricks-Diabetes Blog Week 2016

Todays Topic:
Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

Diabetes Blog Week



I get lots of my tips & tricks from other D-Moms, not sure how much of how we do things differently that others but I'll be happy to share some things with you.

I have a storage cabinet with all his supplies in it.  I organize everything according the expiration date.  So that I'll grab the soonest expiring first.  I keep a tupperware right next to the insets and dexcom sensors and empty a box into it.  I use those up and empty the next box in.  Kinda like a store rotating stock.

Justin's pump is waterproof so swimming and the beach isn't such a worry.  He wears his dexcom site on his arm, and when he's going in the ocean I wrap it with CoFlex.  I put the receiver in 2-3 baggies and in the "dry bag"  We've lost one to accidental swim in the pool so I'm over cautious with it now.  

My favorite trick is my pebble watch, I know lots of people are rocking them too. We have ours using the share, and it's been great!  It's awesome when were out and about, it's so convenient to just look at my wrist and know where he's at.  And I love that I can text Justin and he gets the notification on his.  Technology sure is a great tool!  

Thank you so much for checking out my blog this week, it's been fun sharing with you!

Thursday, May 19, 2016

The Healthcare Experience-Diabetes Blog Week 2016

Topic for Thursday:
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!


Diabetes Blog Week



How could healthcare be improved for us?  

Justin's Endocrinologist is amazing, I honestly can't think of anything that would make his visits there better.  She's always a step ahead of me with school forms and other paperwork.  She always takes plenty of time with us, answering all my questions, & going over all his data.  At our last visit she was trying to help me with some basal rates and figure how how to fix a trouble spot during the afternoon we were having.  She pulled up a chair and scooted over to me with all the data and we discussed together how we could fix it.  She has just clicked with us since day 1 in the hospital.  There was a few months when I thought we weren't going to be able to see her anymore because of insurance and I was devastated.  When we finally got that straightened out and made an appointment, she was so excited to see us.  She came in and gave Justin the biggest hug ever.  He always loves talking to her about EVERYTHING.....she just laughs at him the whole time.  She is never demeaning with his A1C, even if it goes up shes very encouraging & lets figure this out, it's ok kind of attitude. And if it's a great one she celebrates it for us!  We are very blessed with her!

Our insurance has been wonderful too.  Authorizations done in a timely manner, it was less than a month from the time we started pump process until we were hooked up!  And getting the supplies for both the pump and the Dexcom have been ridiculously easy for us as well.  I realize this is not the norm for this and am super thankful for it.  Right now I'm trying to get the test strips authorized that he could use with the pump meter remote.  So we will see how this goes......

My biggest frustration would be insurance companies having preferred items, insulins, test strips, pumps, there really needs to be a choice on the patients behalf since these items are being used on a daily basis to keep you alive.  Some being attached to you 24/7, there should be a choice what you wear. Luckily for us everything we have needed has been covered....so far. 



Wednesday, May 18, 2016

Language and Diabetes-Diabetes Blog Week 2016

Topic for today:
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.
Diabetes Blog Week



I honestly am one of the people that it really doesn't matter either way. I do try not to label him as "the diabetic." Usually if I'm introducing Justin to other people within the diabetes community I will say he's my T1D.  Other than that he's Justin, and if they need to know he has Type 1 diabetes.  I try not to let words bother me too much, diabetes is stressful enough for me, and him.  

As for testing, sometimes we say check blood sugar other times I tell him to test....again, no big preference.  


I just don't like if people are talking about diabetes in a uneducated way, not knowing facts, and blaming him, or me for it.  That's when words hurt. 

#Diabetes with a slice of cake or indulgent dessert is really annoying also.....but mostly I try to ignore it because I don't need any added stress, as irritating as it is.  

That's all I've got today...see you tommorow :)


Tuesday, May 17, 2016

The Other Half of Diabetes-Diabetes Blog Week 2016

Topic for Tuesday:
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

I am the caregiver (Mom) to a 10 year old kid named Justin :)

We have been on this T1D Journey for about 3 1/2 years now.  Demanding isn't even the right word for it.  I have gone from furious, to crying in a matter of minutes over diabetes and its ridiculous antics.  

It has gotten better over the last few years, although there are still times when I'm super frustrated & just need a good cry.  I really just try to keep a positive attitude, if a high number shows up on the meter, we give a correction and move on.  If a low number shows up we treat it and move on.  I noticed really early on that if I let that meter control me and my emotions, it affected Justin more.  So if he tests and 380 shows up...am I upset yes, but I'm just like dude, we gotta give a shot and maybe change that pump site. The only time I get more anxious is with anything under 55....especially if the dexcom is showing any arrow down.  I feel my heart stop for a second, as I'm rushing to get him a juice to drink.  

There are many days when it just overwhelms me again, just the daily having to do all those things gets to you over time.  I get super frustrated and cry then I feel better.  

As for Justin, he tends to bottle his feelings up over time.  I'll ask him if he's had a flame thrower day after school.  It's usually a no.  He's had some rough times with other kids at school and the diabetes.  We are working through those things, and they seem to be getting better.   I know there are days when he's just over it, and I try to be encouraging and just help him.  He tests himself, and boluses himself.  But on those days when he's just not feeling it, I jump in.  Whatever it is that helps him at that moment.  Pricking his finger, bolusing from the remote.  However I can relieve some of the stress he's feeling.  We try to laugh about things, yes he usually laughs changing sites.  He will just be silly, or something makes a noise and its just hysterical.  

We encourage each other alot. If he sees me getting upset he tells me it's ok.  I do the same for him.  And sometimes we've shared a good cry and you know what we felt better afterwards and then were back to fighting this battle full force.  

For us, "God didn't give us what we could handle, he's helping us handle what we were given".......










Monday, May 16, 2016

Message Monday-Diabetes Blog Week 2016

Topic for Monday: 
Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)


I started blogging not long after Justin was diagnosed in November 2012.  It was a way for me to let family know what was going on and how we were doing.  It was also a place for me to vent my frustrations.  

I wanted to start blogging because, before we had even left the hospital I was googling "7 year old son diagnosed with type 1 diabetes" and other similar searches.  I came across many T1D Mom blogs and reading their stories gave me such relief knowing that I wasn't alone, and someone would understand exactly how I was feeling.  Yes, I knew we weren't alone, but in the days that follow after your child gets diagnosed with a chronic disease, it's a very lonely place.  

My hope when I started was that another parent of a newly diagnosed child would find my blog & think the same as I did, relief that someone else felt the exact same way and understands.  

My biggest awareness message that I try to get through, whether on my blog or through facebook is the signs/symptoms of Type 1 diabetes.  There have been way too many deaths due to undiagnosed T1D.  When all it takes is a drop of blood, It breaks my heart that families have to deal with that. 

Looking forward to sharing my thoughts over the next week with you!











Tuesday, October 13, 2015

Be Thankful!

I've got a lot on my mind lately regarding diabetes. It's been rather frustrating lately, we've had a few pump sites fail resulting in a blood sugar of almost 500. I hate that Justin has to deal with this rotten disease, I truly hate it.  
 
  In the mornings when I go to wake him up, I sometimes for a split second will remember life before diabetes, and how peaceful he looks at the moment.  Then I will see the pump site or Dexcom site peeking out from under his shirt and be thrown back to reality. My heart aches for him.  

But as much as it sucks living with this disease, he's here with me.  There have been too many stories this year about children that didn't make it because of misdiagnosis.  It makes me sad & angry that it's being missed by doctors.  I think the first thing that needs to happen is people getting over the thought that diabetes is because of eating sugar/junk food.  That's tough to do since even childrens movies make fun of diabetes. If you haven't already Hotel Transylvania 2, has a comment about eating cake and getting diabetes. :-/
 Its really frustrating!! 

I'm trying really hard not to complain about diabetes, especially on Facebook where I know I have a friend who lost a child to this.  Its not fair at all.  People come into our life for reasons and this is something I need to get past.  I do not want that vibe passed onto Justin, he knows he can do anything & this isn't going to stop him!