Justin's Story

Friday, May 19, 2017

MORE THAN DIABETES #DBLOGWEEK DAY 5

Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)



Justin definitely more than diabetes.  Although at times it seems it consumes us as that's what I often post about on social media, especially near walk time!  But there are lots of things he loves to do, I'm just going to share a bunch of pictures and let them do the talking. 

Justin and his "Kid-tecture" project from last summer.  

Getting ready for a ride in a race car

Loves space and rockets!  

Go-Carts!  

Loves star wars


He loves to make art!

He does well in school

More art! He loves art!!




Going to the movies is a favorite activity

Thank you for checking out my blog during #DBlogWeek 2017!  
Make sure to subscribe so you'll be notified when I post, thanks again!





Thursday, May 18, 2017

THROWBACK THURSDAY-WHAT BRINGS ME DOWN #DBLOGWEEK DAY 4

Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)




The emotional side of caring  for a child with T1D is for me the hardest part.  For the most part we just do what we need to and diabetes isn't the main event all day.  Justin handles the finger sticks, pump site changes and dexcom site changes like a pro and with no complaints.  But there are times when I will think about his future or a site change hurt and there are tears in his eyes but he stops them and says he's fine, its ok.  Those are the times it's not ok.....at all. 

I absolutely hate that I can't take this away.  And while we allow him to everything he would have done if T1D never came into his life, his childhood isn't the same.  It's not normal to have to stick your child with needles.  And when it hurts enough to make him tear up, it breaks my heart even more than it already is.  

I've cried many tears over the fact that he has T1D, I've cried in fear that he will somehow hate me when he's older and that his memories will be of me sticking him with needles.  I cry when he's over it and frustrated.  Me and Justin have sat together and cried while I'm holding him, I just let him vent and get it all out.  It's been a long time since he's done that, but it helps.  

Also he had a counselor for a little while because he was having trouble dealing with diabetes and just very angry about it.  It helped, she talked to him about ways to manage his anger and in the end it came down to he was upset when he was at school because Mom and Dad weren't there to help with diabetes care. He is now independent at school, besides going to the clinic for lunch so numbers can be logged.  

Another thing I always say is that I worry about Justin's mental health as much or more than I do about blood sugars.  For example; He calls from school because a classmate brought cupcakes for their birthday, his blood sugar is 280.  I refuse to tell him he cannot eat the treat with the rest of his friends because of his blood sugar. Yes I know that a cupcake isn't a great choice when your bg is high, but he gives the appropriate amount of insulin to correct and cover the carbs. Then he gets to enjoy the celebration with everyone else instead of sitting there watching everyone eat (That image alone is heartbreaking for me) In the long run, I find this much more detrimental.  And yes I know all about diabetes complications, I work for a podiatrist and have seen way more than I care to share in this post.  But I think about the whole picture, his whole life with diabetes tagging along. 

My thinking wasn't always this way, but I have learned to roll with it, otherwise diabetes will be controlling us instead of us controlling it.  

I try to empower Justin so he knows he can truly do ANYTHING he wants, and he's got this. 









Wednesday, May 17, 2017

THE BLAME GAME #DBLOGWEEK DAY 3

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)






I can only talk from a moms point of view, but I can't even count the number of times people both close and not have said some pretty hurtful things.  Some may not even notice that they do it, or that it's hurtful.  

  • I've been told that he has the "bad type" of diabetes.  
  • I've been told that its because of what I ate while pregnant
  • I've been told I allowed him juice too early or too much
  • I've been told that he must eat a lot of junk food
  • I've been told that if he "eats right" he can stop insulin
  • I've been told that certain "natural" drinks and magical potions will cure him
Instead of making assumptions when you don't know about something you should try and offer support, and I realize that people will share their "cures" meaning well, but I'm not sharing random things with people to cure any other disease.  I guess maybe I'm in the minority, but even before diabetes I wouldn't have said these things to anyone.  Maybe say I'm sorry your going through that, It must be hard, if there is anyway I can help let me know!" Not just hear the word diabetes and make assumptions about my parenting or my child.  

Now while many have said hurtful things, I have way more people around that are very supportive.  Obviously our local T1D families are the best and understand completely what it's like!  But I have a few good friends who will listen to me vent or talk about T1D and even though they don't understand that language will listen and try to learn and offer support any way they can. 

Try and ignore(yes it's hard) those who say hurtful things and know that they are just misinformed and trying to help even though it doesn't seem like it.  

Embrace those who stick by your side on this journey, they will be your lifeline and keep you from going crazy!   













Tuesday, May 16, 2017

THE COST OF A CHRONIC ILLNESS #DBLOGWEEK DAY 2

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)






Great topic to spread awareness about the cost of a preexisting condition.  Type 1 diabetes, is a very expensive disease.  For starters i'm going to list the prices of items we need for Justin's care.  These will be approximate prices that I've found on various medical supply websites,  without insurance or any other assistance.  

INSULIN- $270.00 (FOR 1 VIAL, WE USE 2 A MONTH FOR JUSTIN)

ONE TOUCH 
TEST STRIPS- $145.00 (FOR 1 BOX OF 100, WE USE 2 A MONTH) 

DEXCOM TRANSMITTER-$745.00 (USE 1 EVERY 3 MONTHS)

DEXCOM SENSOR- $857.00 (FOR 1 BOX WITH 4 SENSORS, 1 BOX IS GOOD FOR US FOR 2 MONTHS)

DEXCOM RECEIVER-$1,200.00 (REPLACED ONCE A YEAR IF NEEDED)

INSULIN PUMP SITES-$190.00 (FOR 1 MONTH SUPPLY)

INSULIN PUMP CARTRIDGES-$55.00 (FOR 1 MONTH SUPPLY)

INSULIN PUMP-$8,000.00

*I'm not including items such as skin tac, unisolve, alcohol wipes, batteries

TOTAL MONTHLY COST WITHOUT INSURANCE FOR US:  $1932.00  (NOT INCLUDING PUMP, THE DEXCOM TRANSMITTER AND RECEIVER)  

It's beyond ridiculous!  

Justin was on a medicaid program and we were receiving all of his supplies for no cost except for our monthly premium, which was not much.  His insulin and test strips were $5.  Unfortunately because of a raise my husband got (not much mind you) we no longer qualified for that program.  So now we have a plan with a deductible and were saving money onto an HSA account to help pay for it.  So whatever raise was gotten is gone.......

I can totally understand why people choose not to have a dexcom or a pump.  Just the insulin alone is way too expensive.  

The high cost of care for Type 1 diabetes can definitely impact ones care, you may not test your blood sugar as often to save strips, or not take as much insulin as you need.  These things shouldn't be happening.  It's truly beyond me why other countries healthcare is a right and here in the US it's a business.  People are dying because they can't afford insulin.  It's not right, that shouldn't be happening and it really makes me angry. 

When in a pinch ask your doctor for some supplies, heck ours just gave us a box of pump sites!  Shes's given me test strips and insulin as well.  It can't hurt to ask.  There are also "pay it forward" groups in which people will trade or give supplies, which have recently been in the news as the cost of insulin went up again.  






Monday, May 15, 2017

DIABETES AND THE UNEXPECTED #DBLOGWEEK

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)






Being prepared with T1D......Things we carry with us on a daily basis for things around town include, meter(in his case we also have batteries for the pump & meter and a syringe in case pump site falls off I could take insulin from the pump),low snacks, glucagon.  As far as trips go, I pack like its the zombie apocalypse LOL!!   What ever diabetes could throw at us I'm ready.  I use a big Tupperware and pack all diabetes supplies in it, except for the insulin which is in the cooler.  My best tip would be just to not get so uptight about carrying so much stuff everywhere, if your going to the grocery store or target or something like that you most likely aren't that far from your house.  So if a pump site comes off, I have a syringe and can get some insulin from the pump if he needs it.  We can get home and put a new site on.  I don't feel the need to run out to the car and put a new one on immediately. I realize people do and that's OK, just not how we roll.  I've learned to do what YOUR comfortable with.  I would hate for someone to read this and stop carrying things that makes them secure. Whatever works for you and your T1D is what you should be doing!
















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!