Thursday, September 22, 2011

Wish I could put glitter in my pipe and smoke it...

Im not really involved in the unicorn-rainbow-glitter-ram it where the sun-dont-shine, attack our differences rather than support and convince-you-our-way-is-the-right-way disagreement.   

I have been reading blogs that discuss the issue... Im sad that its upsetting my DOC friends. 

Its sad the DOC is divided.   We have enough on our plates without being un-supported BY EACH OTHER. 

Judgement and selfishness come to mind right now.

This has made me examine myself.

My blog.  And.  The things I choose to share regarding living with a child with Type 1 Diabetes.

I would think it pointless to get on here and rave on endlessly about how wonderful my husband is.    After a while you guys would think I was Bragger of the century and not stop by at all!   It wouldnt be true to myself and who I actually am in real life to bang on.  I just feel like its insensitive and... deceptive to portray your life as perfect....     Im thinking about that bit of bile that comes to re-visit when watching a couple spoon feed each other a peice of cake....   Rather than think its sweet, Im in the do-that-in-privacy group and arent-you-grown-up-enuf-to-operate-your-own-cutlery?     Its pretentious and a big ol' show.

Hence why I dont actually visit any glittery blogs!!

Im sensitive to the fact that other people feel comforted and can nod and agree in the struggles and hard times we face.  Dealing with D and other areas of our lives.   

I have alot of blessings in my life.  But this blog is about diabetes.   I dont count it a blessing... nope I didnt want this package, I dont think our name was actually on it ! 

It would be nice if I could just glitterize things, but I have a reality.    Just this morning Im preparing to make the 4 hour trip over the weekend to visit my folks - who have beef cattle and a horse and geese and motorbikes..  who live a good 30 minutes from a town.    Its infact the first time Ive been since Reubens first Christmas, when he was 3 months old.   Then he was diagnosed with type 1 the following May.   I have a hard time getting my three young kids ready to go to the park to play let alone on a long trip.   I cant pretend its not producing anxiety and worry.   Im truly sorry that I ring Mum and burst into tears, when I just planned to ring and ask when we could come, but its where Im at right now.   

My kids dont have extended family anymore because they are selfish and rude and are just never going to 'get it'.  

Until you have a child diagnosed with a chronic illness you dont realise what grief really is.    And theres stages to grief, denial, anger, survival, asking for help.    Its very traumatic.   I gotta deal with it as it comes.    I have to feel the pain and express the emotions or I wont cope.

You cope your way - we will cope ours!

Diabetes is a tough master.  
It necessitates we think about our child, and food,  all day.   
All night.   24/7/365.    Never ending.

We have to stock our home pantries, diabetes supply bags and cars with the right carbs for emergencies.   We think about whats in the meal, and the GI of the carbs, what they last ate, how much medicine they had/need/will possibly need.  

We have to know where we are going, how long, and what facilities are there.   
We have to think about supplies like medicine, needles, blood glucose meters, strips, ketone strips, and spares of all of the above just incase.  We have to be able to carb count, and compute insulin on board.    More than that its an emotional disease.  
I have to prick my son and make him bleed at 5am, 8am, 10.30am, 12noon, 2pm, (sometimes at 3.30ish), 6pm,8.30pm,11.30pm and once more overnight.  Sometimes I test because hes upset.  

Perhaps hes low?
Perhaps hes high?
We are going for a half hour drive.   Test.
He tripped over.   Test.   Someone offered us a small chocolate.   Test.  
I have to give insulin to match carbs at 8am, 2 different insulins to keep my son alive.    I mix them together after counting what I need to cover his food, and what I need to correct his number.
Its all numbers.

I give medicine with dinner. 2 more needles.   A long acting to take him through the night.   Not too little so he spends the night high, and threatens hyperglycaemia then the horrific condition, ketoacidosis.   I give not too much so we live in fear of hypoglycaemia.    A 15 year old in the diabetes community just passed away from untreated low blood sugar through the night.  Every night is a gamble of insulin and carbs.    We are not immune from this reality.

We aim for what seems like the elusive balance.

So if you dance around on roof tops singing of rainbows good luck to you!

Love and hugs to you ALL on this journey.


  1. wouldn't it be nice if we could "glitterize" everything?!
    I agree with you Jules, I think the main point is that if people are offended than why are they reading our blogs that aren't always rose colored. Why complain about something you do not have to participate in? That is odd to me.
    Have a great day...and BTW I want some more pics of your little Rubes, he is absolutely adorable!

  2. Elusive balance.

    Perfectly said. Blogs are written from a 1st person experience.......and that experience is subject to change without notice.

    You're doing a great job, my friend.

    I hope you have a wonderful time with your mum!!!

  3. You are definitely doing a great job Jules! I am totally with you on the glittery glitterness of things. Hope you have a fantastic time visiting your Mom and that all goes well with blood sugars :o)

  4. Love the word "glitterize". I may have to start using that....and yep, I guess I am looking for people to be more accepting of one another so that we may be a more cohesive community. Perhaps it will happen...perhaps not. None-the-less, I am so very happy to have found you Jules. We are in this together. Loves ya girl!!!!

  5. You keep on writing out how you feel. That's what gets us to the next stage, the next level. In your time, in your way, you will get there. I'm personally weary of the word "glitter" and would prefer to call our life for what it is. When it's hard, call it hard. When it's a victory, call it a victory. When it's good in spite of the circumstances, call it that. When it breaks your heart, the nights are too long, the days don't give any relief, the answers you need just aren't there . . . say it, write it. You will be heard. We'll get through this together.

  6. Thanks for sharing.. Hope you have a great weekend with your folks :)

  7. You are blogging about a chronic illness, one that effects your child long-term, one that threatens him daily short-term. No way to glitterize that hard truth. There are some that choose to believe Type 1 is not a disease, but a "condition"; that complications usually happen only to Type 2s who don't take care of themselves... when our children are at the highest possible risk. It is a form of denial, and for some people, this denial is essential in order for them to function. When something or someone threatens this view of reality, they will defend it by any means necessary. They have to in order to maintain mental health. I'm with you... lost my mental health a long time ago, LOL; can't help but call a spade a spade... no way to put perfume on this pig. I think living in reality is healthier for both you and your child long-term. Even staring the hard, cold facts in the face, I think our kids have a good chance at remaining healthy, as long as we are vigilant. And I firmly believe there will be newer therapies and faster, safer and more effective insulins within ten years time. We have to hang in there somehow until we get some relief.

  8. Just stopped in because I was thinking of you and just wanted you to know.

  9. Not sure what's been going on since I've been MIA but I'm glad to catch up on your blog I love your blog and you are right it sucks and it's okay to say so I'm glad your trip went well I understand about the anxiety I have it alot andeven more now with the pod hugs to you