Justin's Story

Sunday, May 19, 2013

Spread the Love - Diabetes Blog Week Day 7

Todays Topic:

As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you. (Thanks to Pearlsa of A Girl's Reflections for inspiring this topic.)

Hard to pick 3!!  I have loved this week, and reading different blogs.  The DOC  has been such great resource and place of encouragement for me.  I don't even think we had left the hospital after diagnosis and I was Google-ing for more information and trying to find stories like ours to have someone to relate to.  I knew he wasn't the only 7 year old to ever be diagnosed, but at that moment it felt like it.  

Today is exactly 6 months since Justins diagnosis.  We are looking forward to a awesome summer, full of excitement, and firsts for Justin!  We aren't gonna let diabetes slow us down!  Our son is a rock star about everything!!

So these are the 3 blogs I connected with most this week, all 3 are new blogs to me!

Queen Mother and her Sweet Type 1 Princess - She and I have kids almost the same age, diagnosed not to far off from each other.

My Diabetic Child- Of course I immediately connected, She also has a Justin that was diagnosed at 7 years old.  My Justin thought that was pretty cool!

Our Life with D-She commented on on of my posts early in the week, and I headed over to read hers! Loved it!

click below to see a full list of all bloggers that participated this week!
2013 Diabetes Blog Week Participants

I can't wait to do this again next year!  Thanks for an awesome week fellow D bloggers!!

Saturday, May 18, 2013

Diabetes Art - Diabetes Blog Week Day 6

 Todays Topic:

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

I'm a scrapbooker!  This is my submission for todays art theme :)

Friday, May 17, 2013

Freaky Friday - Diabetes Blog Week Day 5

Todays Topic:

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

Ok so I had to google chronic diseases for this one, found a list and I have to say, I'm not sure what we'd rather deal with.  

I mean there were things on that list like hypertension, really? I get that its chronic, but you take a pill, and most of the time that's enough.  Doesn't at all compare to diabetes.  

I'm the kind of person that believes everything happens for a reason, whether we find out why right away or not.   

Yes it sucks having diabetes, and that its a 24/7 job.  But there are much worse diseases, at least with diabetes Justin can still live an active life.  We know so much about diabetes already, and I continue to read and learn more all the time. So from a parents perspective, I wouldn't change a thing.  This is part of Justin, and I don't want to change him. Every disease has it's struggles, and I honestly couldn't say that any of them are "better" than diabetes.  

I'd ask Justin what he'd want to trade for, but he doesn't know what any of them on that list really are LOL!  He knows about diabetes, and in school right now they are learning about the human body in science.  He asks me this morning, "Why aren't we learning about the pancreas at school?"  I told him most kids won't even know that word, and that it's not really 2nd grade science material. He's a smart kid, and can tell you a lot about being a type 1!

Thursday, May 16, 2013

Accomplishments Big and Small - Diabetes Blog Week Day 4

Todays Topic:

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)

 So I thought about this one all day, Its been 6 months since Justin was diagnosed.  I feel like everything we've been doing to take care of him (counting carbs, checking BG, giving insulin) is just what we have to do, and not really an accomplishment that we have mastered in such a short time.  I'm the kind of person, you teach me what to do and I do it.  That's what were doing on a daily basis.

I feel like our biggest accomplishment is just accepting that our son has diabetes, and adapting to our new life.

It still feels weird when I'm telling someone for the first time that my son is a type 1 diabetic, it just sounds so strange coming out of my mouth.  But we haven't let this slow us down at all.  He was diagnosed Monday before Thanksgiving, so he had some time off of school before going back, but he was back the first day after break.  And we were back at scouts that week, he never missed a meeting because of diabetes.  

We pretty much kept our routine what is what, and just added diabetes into it.  Have been to Disney, planning a trip to the Rapids, he still goes over to play at his friends next door.  

We just are doing our normal, with some added supplies and TLC for Justin :)

It didn't come easily, but I knew if we stayed away from our usual activities it would be that much harder to go back to that routine.  I didn't want to send the message to Justin that he was different and couldn't do things because he has diabetes.  He felt better by the time we left the hospital and was pretty much back to his normal active self, so we had no reason not to do things!

I won't lie, it's so overwhelming at first, and still is at times.  But we try hard to make it so that diabetes is background noise, not the major part of our day.  At the end of the day, I don't want Justin to remember getting a shot, I want him to remember what we did as a family that day, or a silly moment, good memories.

Wednesday, May 15, 2013

Memories - Diabetes Blog Week Day 3

Todays Topic:

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

Well at this point in our D-life, the most memorable day is still diagnosis day.  Thank God Justin has not had any bad lows or highs. His lows have been quickly treated and his numbers come back up to were they should be. 

So diagnosis day..........It's tough to think about honestly.  

I knew that Justin was diabetic, before the doctor told me, it was just a gut feeling I had.  I remember being so nervous that day dropping Justin off at school.  I called the doctor just after they opened at 9, left a message explaining what his symptoms were and that I really thought he was diabetic.  I got a call back within 30 minutes, and was told to bring him over at 12.  I left work early and went to pick him up from school.  He was so surprised to see me there, I hadn't told him I was gonna come get him because I wasn't sure when I would be asked to bring him.

As soon as we got to his doctors office, of course he needed the restroom.  They checked his urine, and pricked his finger to test his BG.  Seemed like FOREVER for the doctor to come in, when in reality I think it was only about 5 minutes.  He came in with a sad look on his face (he is usually just a silly guy and smiling & singing) so I knew right away before he even said anything.  He said "his sugar is high", which on his meter, meant over 400.  We were sent directly to the hospital and seen immediately upon arrival.  The rest of that afternoon was a roller coaster of emotions.  One minute were being told he will be admitted to the PICU, the next the endocrinologist says he's ok to go to the peds floor. The rest of the afternoon is kind of a blur.  I remember them checking his BG, a few times after they started the IV.  He was so hungry, and not allowed to eat until all of his blood work was back and the doctor looked at it.  It wasn't till almost 8pm that we got up to a room on the peds floor, he got his first dose of insulin & got to eat finally!!  

And then the crash course in diabetes training began.....................

That's our most memorable diabetes day.

Justin in the ER, still smiling! Love this boy!!

Tuesday, May 14, 2013

We, the Undersigned - Diabetes Blog Week Day 2

Todays Topic:

Recently various petitions have been circulating the Diabetes Online Community, so today let's pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?
(Thanks to Briley of inDpendence for this topic suggestion.)

Ok so 6 months into this new life of ours, and honestly our biggest struggle is the expense of all the supplies.  We have decent insurance, and a HSA, that is already used up for the year.  Luckily now we have met our RX deductible.  After its met, things are a little more reasonable but now its completely out of pocket since the money on the HSA card is used up for the year.  

My petition would be written to ??!!  Maybe the governor, I have no clue....  Whoever can help lower costs!!

In searching for any kind of assistance program for diabetic supplies, all I seem to come across is help for those 65 and older and on Medicare........Well NEWSFLASH, Older type 2's aren't the only diabetics!  In fact Type 2, depending on what medication they are on don't need to test BG even close to as often as I test Justin in one day!  The test strips are definitely the biggest expense, and besides the life saving insulin, the most important supply!  

I learned very quick that all of the companies are super quick to send you or give you a free meter, only to be suckered in to buying there super expensive test strips.  There should be some law banning that, or somehow make strips universal in all machines.  

Before deductible, the monthly cost on everything, which is just regular price for anyone tops $400!!!  That is just crazy!  Now that deductible is met cost is about $100/month, much more reasonable. But still when your already on a budget makes things that much harder.  Plus we don't refill everything exactly every month, some things last a little longer than 30 days.  

I am blessed that we have insurance, and are able to pay for these things for Justin, but what if we couldn't, or what if there's a time when we can't afford to.  I have had adult diabetics tell me they would only test 1 or 2 times a day, cause they couldn't afford the supplies.  That is just ridiculous!!  No one should have to put there life at risk over these necessary supplies.  

There definitely needs to be a better assistance program, geared to getting diabetics of ALL AGES, lower cost supplies and medications. 

And that's my rant on that :) 

Monday, May 13, 2013

Share & Don't Share - Diabetes Blog Week Day 1

Topic for today:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?(Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

May 19th will be 6 months since Justins diagnosis.  I have loved his endocrinologist since the first time we met in the hospital!  She has the most easygoing, sweet way about her.  One of the first things she said to me was "He's still your little boy, and he can still do anything" She gets along with Justin so well, when were there she always wants a hug from him, she says he's so sweet.  Justin makes her laugh the whole time, he just chats with her about everything!  We always have had more than 15 minutes with her, she will answer questions, and just get to know us better.  

If there was one thing I wish she could see it would be the simple things like, when we are leaving church and each kid gets to pick a piece of candy on the way out, he can still take one, but has to wait for the right time to eat it, while the other kids are eating it on the way out and he's begging me to eat it now.  Or at school when the kids bring in cookies or cupcakes for a birthday and he has to go check his sugar first, and then we decide if its ok for him to have.  (Most of the time it is fine, and we take the frosting off the cupcakes, he doesn't like it anyway)  But just the sound of disappointment in his voice at times makes me so sad. Just the daily struggle with trying to let him still enjoy things other kids can just eat whenever, and keeping the BG numbers in check.  

The one thing I wouldn't want her to see is that I have complete emotional breakdowns.  I can't do anything but cry. When we've been at her office, she's always is telling me how well we are all handling everything, and for the most part we are.  We are going through the motions really, we have no choice if we want our son to be healthy.  We put on our happy faces and deal with it.  But every so often it gets the best of me, and I feel like I just can't deal with it anymore. I get tired of living by the clock, and making sure he eats at certain times, instead of when he's ready to eat, and begging him at times to eat a snack even though he's not hungry.  But I don't want him to go low, and he doesn't completely understand that yet.  
Basically I'd like her to see how hard we try, and how hard it is to be perfect at this.  Not too much to ask is it? :)
This is Justin with his awesome endo Dr. Damian @ our local JDRF Walk
You'll have to excuse the koolaid(crystal light) mustache LOL

Monday, May 6, 2013

Diabetes blog week

So next week I will have a post each day, based on a topic they give regarding diabetes, and a bunch of Diabetes bloggers are participating. The idea is to have a bunch of different takes on one topic :) I'm excited to see what I come up with!