Day 4 of WEGO  30 day, 30 post challenge

Sharing Resources.

So my goal today is to create a “care page” for someone who is newly diagnosed with Type 1 Diabetes.  A one stop shop to get you, the out-of-the-frying-pan, into-the-fire T1D, or parent of one, who’s head is still reeling and who’s room won’t stop spinning, onto solid ground, or at least point you towards it.

There’s no one size fits all, but here’s what worked for me.  Just keep in mind that it took me about eight months of sulking to get to the point of looking for help (now I was in the middle of a rough pregnancy and dealing with my mother’s terminal illness and those may have played a part).  I let my wonderful husband, Terry, take care of all things Diabetes until I was ready to face up to Alison’s diabetes…it takes time, so don’t expect to be ready to go on day one.

First things first, I took a course on living with a chronic illness.  I took one the one in Ottawa from Champlain Health, but I am sure that there are other health care organizations in your area that would offer similar courses.

There are great websites listed on the sidebar of my blog that you can visit for support.  Some, not to name them all are: JDRF Canada or JDRF USA, Children with Diabetes,.  These will give you facts on advocacy, tips and where to get help. 

Also, Google and youtube things.  I found that I would, and sometimes still do, google set changes or injections just as a refresher.  There are so many parents, nurses and companies that create videos on how to check blood sugar, how to inject a needle, how to do a site change…if you are not sure, look it up!!!

For me, a little levity, hope and some downright sarcasm is the way I approach most adverse situations.  Here are some inspiring, sometimes “tell it like it is” folks that I just couldn’t make it through life without.  Most of these people I am proud to call my friends, but I used to just watch them anonymously before:

 Mike Lawson  Socially Diabetic  Mike is the king of sticky note inspirations but don’t let the depth of his testimonials fool you,  there are days (usually the ones where I am really frustrated with the rest of the world) where he seems to echo my thoughts and give the non DOC (Diabetic Online Community) what-for.

The Blue Heel Society run by Diane Pridmore, Tony Cervati, Jenn Hamilton Loving and Thomas Moore is an awesome site!  It's all about advocacy in blue shoes baby! In fact, I am wearing my blue shoes as I type this post. I cannot say enough good this about these people.  Jenn and Diane have been a candle in the window for me on dark and stormy nights.

Scott Benner, published author of Life is Short, Laundry is Eternal, Confessions of a Stay-at-Home Dad and author of the blog called Arden's Day.  Scott’s blog is a wonderful, honest account of a father’s perspective on being a caregiver for a child with T1D.  I visit there often and have found his writing to be amusing, touching and profound.  Scott is always open to questions.

And you can visit me if you wish.  I don’t have answers, but you can always bare your soul, and maybe I can point you to the right person, because I have probably been feeling what you’re feeling, in this share experience, this family called the DOC, we’re all in it together and that is truly the best resource we have.

Wordless Wednesday -

2nd Anniv With T1D

Five Things You Ought To  Know About Type 1 Diabetes

Okay, so day two’s challenge is to school you. It’s my duty to teach you five things about Type 1 Diabetes. After two and a half years of life as a D-family, can I narrow it down to five? Can I pick the five most important? Can I pick out five things you might not learn somewhere else? Can I do all this while
keeping you entertained? Delighted? On the edge of you seat? Probably not…but I will try.

1) Diabetes is not the end of the world. It seems like it on the day of diagnosis. It seems like it weeks later, months down the road. It kicks you in the nether regions even 2.5 years later, but it gets you down a little less often. At the end of the long, long day, everyone gets by. It sucks,
but you get through it. I promise.


2) There is, despite what people think, nothing my child cannot eat. Well, except for poison and cookies made with poison. I however cannot manage eggs or milk and really don’t like mushrooms.


3) Insulin doesn't cure diabetes. It is medicine. It helps her get by. It provides a measure of “control” and I use that word loosely. TYPE 1 DIABETES IS INCURABLE.

4) Type 1 Diabetics poke their fingers at least 2000 times a year (if their blood sugar is good). A T1D who is pumping will have approximately 121 pump site changes each year.

5) My biggest fear in the world is the day when I give up control. Someday, my child will be a teenager, and she’ll want to drink beer/liquor with her friends. That will be tricky to calculate the insulin for. Or she’ll rebel and decide she doesn't want to be as diligent with her calculations/ratios/insulin/care. These things scare me to death. Rebellion in my oldest daughter could be so deadly. The day that I no longer choose and calculate what goes into her mouth almost makes me want to cry.

I have to teach this little five-year-old how to take care of her diabetes and pray that all of you who don’t live with it will take up arms with me and find a cure for her, and all the others like
her.

WEGO CHALLENGE DAY 1

Ah!  Easter weekend.  I find it great that the The Health Activist Writer's Month Challenge 2013 started around the Easter long weekend (this is my first attempt at it, so bear with folks) because I always find the time leading up to the Bunny's arrival both a great time to educate and a little daunting.

It is a wonderful time for me, as a parent of a type 1 diabetic child, and, by default, an advocate for the cause, to teach those who have had no contact with the world that "we the D" live in, but it can sometimes be frustrating.  I know that this is because of  my own selfishness and impatience at answering the same questions.  I cannot blame the person who has no diabetes experience for not knowing how someone with this disease lives.

So, I put on my smile and try not to look too impatient when I tell people, again that Alison does get a visit from the Easter Bunny, and he does bring chocolate eggs, she just doesn't eat them all in one sitting!  I try to add levity and tell them that the only things that Alison can't eat are poison and cookies...made with poison.  I tell them that she east how all healthy children should eat, healthfully and that the insulin takes care of the rest.

BTW, the best way you can help is to sponsor Alison in the Telus Walk to Cure Diabetes...here comes the guilt trip, she has raised no money yet..sniff, sniff....just go to http://jdrfca.donordrive.com and type in Alison Morley.  It's that easy!!!!

Get ready world.  I am going to attempt the WEGO 30 day blog challenge.  Please forgive me if some of the posts are short and don't make sense...I will do my very best to be relevant and entertaining for the next month!

My Coming Out Party

Did that get your attention?  Well, I am coming out with something.  It's a secret that I try very hard to keep. Here goes, now pardon my language, because I am going to lay it on in big girl words today - I don't have my shit together.

There, it's off my chest.  You all know my dirty little secret.  We've been living the diabetic life since July 2010 and I am not even remotely close to having things in order.  I may look like I do from time to time and I even think I do sometimes, but I don't.  I will look in my supply area, so neat and tidy and my heart will race, my pulse beating in my ears when I realize with dread that I have three infusion sets left!  I will get on the phone with our pump supplier, all in a tizzy and order more in a Hail Mary Pass attempt to get supplies on my door step with in the hope that we don't have some emergency that will require three set changes back to back to back.

I think I am all zen, in control of my emotions, then someone will say something callous or simply ignorant like "do you really need to test Alison's BGLs in the middle of the night?  What's the worst that could happen?"  or  "I believe there's a metaphysical connection when it comes to illness.  What do you think that Alison was holding on to emotionally that might have made her physically ill?" 

I think we have a routine, then something will happen, say at school, like when the Education Assistants Union decides that the EA's need to be trained by the hospital in order to check her blood sugar or give her a bolus.  Then we find out that after setting up education for more than one EA, the teacher is now doing this (still not sure what the situation is)...Think I am going to wait until I am calm enough to address the situation in the proper manner it deserves.

But here's something that's important to note, when we were first diagnosed, I felt a sense of total and complete loss.  There weren't enough hours in the day for life AND diabetes.  Diabetes won.  There was no fun, no food, no friends, no gym, no movies, no blog.  Now there's time for both on a good day.  Okay, the house is still a mess, but Children's Aid has not knocked down the door demanding the kids, there are no bugs, everyone is essentially well.

And, we live with hope because Alison has hope and she is hope.

The picture below is not my bathroom (mine isn't quite so clean)

Every Three Day Stress

I gotta say, the set change stress is really killing us.  We've tried Elma.  We've tried bribes (small ones, big ones) but some times, last night being one of them, no matter how calm and zen we start out, we cannot get Alison to sit still and let us just quickly administer her set change.  I mean, I don't blame her, I wouldn't want to have someone put a spring loaded needle into my tummy or bum every three days, even if it was numbed. That is a lot to ask of a girl of five.

What does this all mean?  Later bed times for everyone as we struggle to get the pump back on and wound up parents who find it hard to drift off at their bed time and hard to get up in the morning.

Hopefully it will get better from here.