The Whole World is a Stage...This One is a About the Players

We had planned to have a perfect Saturday all week and it had seemed like the stars were all in alignment.  We had family coming over and it was going to be a lovely afternoon.  Apparently, Diabetes decided to try to throw a monkey wrench in that plan.  In a nutshell, Alison woke up in the "extremely-high-making-ketone" way.  We had to do an unexpected set change.  We had to give her manual injections.  She was not a happy camper.   We kept an eye on her and kept everyone coming over as a "game time decision".  Luckily, my brother is the very best when it comes to my kids and had I called him to cancel, it would have been a non issue, but not everyone handles disappointment so gracefully.  This brought me to today's thought...

A friend of mine recently told me that someone she had felt close to had criticized her about not having enough time for their friendship since becoming a mother.  This seems to be a pretty common.  Some people get told nicely. Some don't get told, and friendships just fade away. 

I had a similar situation.  It happened when Alison was about a year old.  Since some of you who read my posts might share some mutual former friends, I will spare too many details. 

I was, accused, however accurately, or not, of being a poor and neglectful friend.  I was told that since the birth of my child, that I did not deliver what was needed or expected by the other parties in the relationship.  When I wasn't willing to realign my schedule and priorities, the friendship found its way to its conclusion. It is said that in each conflict there are the sides of each party and then there's the truth, somewhere in the middle, so keep in mind that I see myself as, although not faultless, somewhat the victim, I am sure that I am not the only party who felt that way in the situation.

I don't want to make light of this situation.  It was very, very painful for me and took a lot to work through and move on from.  

I have found that since Alison's diagnosis, there are people who are more reluctant around her.  They are less comfortable to be alone with her, even if one of us has to disappear for an instant.  That's okay.  There are even those who have been scared off all together.  That's okay too.  But looking back (I know that maybe my own bitterness causes me to be judgmental) I have to wonder, how would people who cannot accept your limitations at the "best" of times deal with your life during the challenging moments?

So to those of you "new" mommies who find the dynamics of your friendships changing, although I hope it is never as drastic as it was in my case, maybe the friends that you really need at this point in your life are taking centre stage and the ones who are going to take more minor roles are fading into the background for a while for a reason.

Jen, Nora's Mom, from the Blue Heel Society, wrote a letter to Diabetes.  She is a wonderful writer, a brave woman and if she ever is up for sainthood, she'll get my vote.  Here's a link to her letter: Dear Diabetes,.

Jen encouraged the rest of us to write and share our own letters to Diabetes.  I want Jen to know that I tried; God knows I did.  My first attempt was an f-bomb laced diatribe.  My second attempt was a letter of a defiant and threatening nature.  The third time around I just wrote "you can't have Alison" and cried until I couldn't cry anymore.

While my attempt at a letter that I could share with all of you, one that would be therapeutic and helpful, might seem like a bust, I re-learned a lesson that keeps coming up.  My friend Tammy's mother Debbie has told me that the universe will send you the same assignment over and over again until you learn it by heart and this one is taking me a while.  IT WILL TAKE A LONG TIME FOR THE PAIN OF DIAGNOSIS TO EASE, if it ever will.

I keep thinking that my life has moved on.  That I am okay with poking my child with lancets and testing her blood several times a day.  That putting tubes into her body and giving her needles is just the way it is.  That it is what it is.  That the late nights are fine.  That watching my child go through her worst moments while feeling helpless is okay.  Then I will have a day when I get that feeling like I did on the day that we were diagnosed almost two years ago.

The best way I can describe it is this.  When they told us that Alison was in Diabetic ketoacidosis , the room felt like the air had been sucked out of it.  Everyone feels it differently.  But that's what it was like for me.  When it hits me, every once in a while, it feels like that again.

The one thing I would tell Diabetes is this though, someone like Alison, who is currently running around the living room, wearing a cape calling herself Super Ali, is hard to put down and hard to be down around your very own super hero!

What does it really cost?

People always assume that my work insurance covers the cost of Alison's pump therapy, but this isn't exactly true.  We are lucky that in Ontario we are covered by the Assisted Device Program, or ADP provided by the OHLTC.  They provide a grant every 3 months to cover some of the costs of pumping and they paid for Alison's pump outright (they cost from $6-10k, so that was nice of them).  Most insurance companies won't pay for the pump device at all!

The money that comes from the Ministry doesn't cover the cost of all of the insurable supplies and my work insurance does cover the difference, which is great, because the prices are crazy!  If I had to guess, I would say that we pay about $500.00 dollars on insurable supplies each month.  We get $200.00 back from the government (we get a $600 cheque every three months) and the rest we eventually get back from my provider.  I say eventually, because a lot of diabetic supplies have to be submitted manually as they don't have DIN numbers and we have to wait for them to travel, via snail mail, to Winnipeg, for approval, then we get our money back.

Also, there's the list of things we don't get reimbursed for but really need to get by with Type 1.  I am sure that I am missing things, and that maybe those of you with T1D may have more ideas or better prices out there - suggestions are always welcome, but here's my list:

• Alcohol pads about $2.99 for a box of 100; we go through at least 5 a day
• Tegaderm, about $40 for a box of 100 and we go through 2 every three days
• Emla Cream about $40 for 30g; we go through at least a tube a month
• Cotton pads or facial tissues
• Pump battery caps about $25 and they need to be replaced every 6 months
• Pump cartridge caps $25, see battery caps above (which reminds me to order both)
• Pump display protective film about $20-25
• Pump belts and cases, they run about $30 each and we currently have 3.  We find you need many, some for dressy, some for sleep, sports, water sports, some have Care bears etc.  The nicer they are, the better the child feels about wearing the pump.  Plus, we've had some trial and error with some that were not really comfortable.
• A good bag for all your out of house excursions, you can no longer just leave the house empty handed.  Even a trip to the mall includes a myriad of supplies
• Foot cream.  We're working out the price on this one because we don't know what we need quite yet.  Ali has just started to get some cracks in her feet.  Foot infections are a problem for T1Ds so we are on the hunt for the best product to meet Alison's foot moisture needs.  We're not sure that an adult diabetes foot cream would be gentle enough for her tender skin so we're trying out some options - suggestions welcome and we'll let other parents know if we come up with an option that works for us
• Medicalert necklace or bracelet.  The cost will be determined by whether or not you just get a piece of jewelry to alert people of the condition or if you want to sign up for the online service where your health information is kept on record.  it could run you anywhere from a $40 one time cost, to a monthly fee.
• You will need a good kitchen scale.  You can expect it to be worth about $30.  We get ours (and our back up) when they go on sale at Canadian Tire for $9.99.  Yes, you will need a back up.  You cannot feed a person who is pumping without a kitchen scale. You just can't!
• You will need measuring cups and spoons.  We have found that since we use so many of them (again, back to having to be really accurate with Alison's food amounts) we just keep buying more of these so that we don't have to search the dishwasher at every meal and snack.

I am sure I missed things, but you will surely get the idea if you made it through the list before giving up!

I have to admit, I am really glad that the long weekend is here!  We've had a long week.  It has been really busy and we've had a couple of days of hypo incidents (lows). 

One night it took Terry and I a few hours, a couple of wake up calls and A LOT of candy to get Alison stable enough to stop spasming and stable enough to go back to sleep. 

We won't go into how much longer it takes for the adults to settle down after a night like that or how much coffee it takes to make it through the next day.

But like all things, the week and this string of lows seems to have passed and hopefully the long weekend will give us all that little bit of R & R that we need.

Enjoy the holiday everyone!

I don't think I really need to say very much as an intro to this article:

Closing the Loop: Artificial Pancreas

How Does Life Look?

I had a few people asking me questions as of late about Alison's life on the pump and I realized that unless you live with it every day, you may not grasp the concept of the overall idea of the pump and what it entails.

The pump is a device that is attached to Alison 24 hours a day, without interruption, via what is like a small catheter, under her skin that delivers mini doses of insulin to her on a continuous basis (hourly).  We program the pump and tell it how much insulin to give her based on trial and error and math that we and her medical team came up with.  This hourly rate, which changes throughout the day, covers Ali's insulin needs for times of "fasting".  It is a basal rate

Before Alison eats we must test her Blood Glucose Levels by pricking her finger with a lancet and putting a drop of blood in a Blood Glucose Meter.  The meter gives us a reading.  We then will use the amount of carbohydrates in the food she is about to eat, do some fractions, figure out how much insulin her body needs to cover off the food, then consider her whether or not her blood sugar is high or low and determine how much insulin to give her prior to her consuming the meal of snack.  This amount of insulin is called a bolus.

As you can guess, meals and snack are not quite as grab and go in our house as they might be with a non-diabetic pre-preschooler...but we're used to it and we manage quite well!

here's a pictorial of the actual process of putting Alison's pump set into her skin (we change this every three days and plan on adding a video soon).

This is what the piece of plastic that stays under Ali's skin looks like.  There is a needle in it, that pokes through the skin during the insertion process

So first we put Emla numbing cream on the site for ten minutes to take some of the sting out of the needle.

This is what the needle looks like

We disinfect the site with some alcohol (yes, it is cold)

Alison has an allergic reaction to the adhesive on the site of her insertion set, so we have to put Tegaderm (a clear bandage used in hospitals) down on her skin as a barrier between the set and her body.

We uncoil the cannula (the tubing that the insulin will travel from the pump into Alison's body through)

We cock the needle by pulling back the white trigger mechanism

We make sure the cannula is in the right position

Then we inject the needle, Ali gets a pinch

We remove the cover

We put another sheet of Tegaderm on top of the site.  Alison has very little body fat (she's pushing her tummy out for the insertion process) and the site sometimes will come out without being taped in place.

Once we take the paper off the sides, Alison will walk around like this for three days, until we change her site again.  We  rotate sides, so the next time it will be on her left side to avoid creating too much scar tissue in one spot.

No Fuss, No Muss

My latest estimate is that we're at around the $465 mark for fundraising so far.  Pretty darn good for a four-year-old who set a goal of $100.  That isn't to dissuade you from donating...we are more than happy to grind this years goal into dust and have the bar raised really, really high for 2013!

Yesterday was one of our first real fuss-free set changes.  Alison didn't protest even a little bit at any point throughout the process.  She usually takes advantage of having had a set change by sitting around on the sofa for a while after complaining that the event has left her in pain and unable to walk or clean up her toys, brush her teeth or what ever other action she wants to put off, but she didn't even take that route.  She really is quite the trooper!

A BIG THANK YOU

A big thanks to all of you who’ve donated to Alison’s Telus Walk to Cure Diabetes so far!

To all of you who haven't donated and plan to, you still have time.  The walk is on June 10th.  Remember that any donation, $1, $2 $5, it is all appreciated!

To those I work with.  Bring in your spare change - I might just be hitting you up for it in the weeks to come!  Come on, do you really need those quarters and loonies?  Oh, I'll take the smaller coin too :)

On Saturday Ali and I went to the Spring into Action Diabetes Expo at the Hampton Inn.  We went last year and I was shocked by how much things seemed to have changed for us.

Alison has grown up so much in the 22 months since her diagnosis.  Part of that must be the difference between a 2.5 year-old and a 4 year-old, but I imagine that the other part is living with Type 1.  I asked her, on our walk to the hotel, if she knew what it meant to have Diabetes and her response was that her pancreas was sleeping and that it would not wake up.  She also understood that because of this, her body no longer makes insulin and that she needs her pump to supply her with the insulin that she needs to carry the sugar from her food out of her body.

Part of me was very proud that my daughter is smart enough to grasp such a complex idea - Ali is bright and I couldn’t be more pleased about that, but it also breaks my heart to know that she understands the sad reality that is part of her life and always will be.  No parent wants to hear that their four-year-old understands that without a machine, they will become gravely ill and they know it.

We were so lucky to meet some great people at the Expo.  We got to catch up with some old friends and make new ones.  I was especially pleased with the session "Does Anyone Know What I am Going Through" where a panel of young Diabetics and their families discussed what their challenges and triumphs have been. The young men and ladies, and their parents were so open, honest and frank and my eyes were seldom dry.

Looking forward to next year's event and seeing where we are in our journey by 2013.