Me at Three

April 27, 2009

Three years ago on Friday.

Sweetpea was diagnosed with Type 1 diabetes.

 Although I am not a numbers person by nature, Diabetes has forced me to live by digits.  And when I think about the past three years, I can't help but think - at least in part - in terms of numbers.

Three years

1,095 days

13,000 finger sticks - give or take

1,000 injections... or more

over 300 site changes

over 100 Dexie changes

over 15 trips to Children's for appointments

5 or so arm draws

3 trips to the ER (one in an ambulance)

2 hospital admissions

1 little girl who does not know what it's like to not be attached to medical devices, who doesn't know what it's like to just eat, who has to answer questions about what she's doing or what she's wearing and why, who feels different from the other kids...

1 little girl who's life changed forever

But the numbers don't tell the whole story.

I think that's why I'm NOT a numbers person.  I'm an emotions person.  And numbers alone just can't tell the full story.

Three years ago, I could not have imagined what our life would be like today. 

Although we have our rough days, most days diabetes is just a part of who we are as a family. 

It's kind of like having a dog. 

You just feed the dog.  You walk the dog.  You pick up the dog's poo.  You take it to the vet and the groomer.  You plan for it when you go on vacation.  It just becomes part of who you are as a family...  and you just do it... often without thinking too much about it. 

Some parts (think poo) you don't really like.  But you have to do it.  So you do. 

Non dog people might look at you and say things like, "I could NEVER walk a dog in the RAIN or SNOW!"  Or "I could NEVER pick up poop!  That is SO GROSS!". 

But you just do what you have to do.

Ok, so you probably love your dog.  And you probably CHOSE to get a dog.  And we most certainly can not say that we LOVE diabetes.  Nor did we chose this.  So... it's only sort of like having a dog.  But you get the idea...

It's gotten easier.  It has.  I hope you newbies out there find hope in that.

Every day is not a cake walk.  It's still hard a times.  Ok, it's hard a lot of the time.  But in a weird way it IS easier.  I think that is why I love this sign I found on Pinterest...

Truth.

Three years in... and I can't say it's easy watching your child cry over injections, or site changes, or blood draws.  It isn't easy comforting them when Diabetes has messed up their plans.  Or made them feel different.  Or made them feel sick.  It isn't easy watching what diabetes does to their bodies and feeling totally helpless to stop it. 

It still sucks.

But YOU get better.  In more ways than you can imagine on that first day or in that first month or even in that first year. 

It will... but don't fear...

And so is your child.  Your child will amaze you at his or her strength and courage and just plain awesomeness. 

And that's kind of how I feel.  Strong.

On our first "diaversary", I felt relieved.  We had made it a year!  It felt HUGE.  And it was...

But life with diabetes just kept going...

On our second "diaversary", well...  we were inpatient at Children's hospital.  You can read about that here.  And we learned first hand that things happen... a series of events and you find yourself and your child being whisked away by ambulance. 

So on our third "diaversary"... I feel strong. 

I'm not naive enough to think that bad things can't and won't happen to us.  I know too much now.

But I also know that we CAN do this.  We ARE doing this.  And we're doing it WELL. 

We are not perfect.  But we are trying our best. 

Yeah, Diabetes gets me down from time to time.  It still makes me mad and sad and frustrated more often that I'd really like to admit. 

But it also has brought so much into our lives through the friends we have made both online and off...  through the closeness we have as a family, through the strength we have learned we have, and through the ability to see joy and see beauty in the small things... and to be able to focus on that in the midst of chaos.

This is me at year three. 


 

Ostrich Pose

I've been pretending to be an ostrich.

You know...  sticking my head in the sand and pretending that I can't hear or see what's going on. 

Specifically, diabetes.

As I've mentioned before I'm a little burned out on D.

We all go through phases in the crazy life... and this is where I am at right now.

I've got my head in the sand and, quite frankly, I like it there!

Maybe it has to do with the never ending tedium that life with diabetes brings.  One bg test blends into another and another...  I bolus and five minutes later forget the amount I've given her before the meal.  The numbers are all running together.  Site change day pops up before I can blink. 

It's this constant ride on the Merry-Go-Round and I've been feeling a bit nauseous.

Maybe it's had to do with our recent visit to the endocrinologist. 

I usually LIKE going to see our endo.  She is so nice and kind and so helpful.  But I was seriously dreading this last one. 

Three months ago, her A1c was not where I wanted it to be.  And I was very frustrated because it was also NOT what our meter was saying her average was.  Getting that A1c felt like a kick in the stomach.  After all of our hard work.... all the tweaking, all the monitoring, all the testing...  For what felt like nothing.

Now, our endo thought it was a good A1c and she was happy.  But not me.  Nope.  I wanted better.  I KNEW it could have been, should have been better. 

So last week.... I was nervous.  Would we see the change that we expected???

And it wasn't just that.  Sweetpea has had high cholesterol since her diagnosis.  At first, it was attributed to her huge consumption of cheese - her favorite "free" food to eat while she was on shots.  But it didn't come down.  So test and after test... no change. 

We met with the dietitian.  She had no recommendations for diet change.  She thought Sweets was eating a very healthy and balanced diet.  Her only suggestion was to try plant sterols... found in some butter, orange juice and other items.  Only problem there is that she doesn't eat butter.  We don't serve OJ because it SPIKES her bg.  And she wouldn't eat any of the other foods - IF we could even find them!

After her test 6 months ago, our endo said that if it was still high she was going to refer us to cardiology.

Now, I know this is not a big deal.  But my heart just sank.  Really?  Cardiology and Lipid Clinic for my SIX year old?!?  While I'm thankful that they keep such a close eye on her, the thought of adding another specialist to the list just was not appealing. 

So I worried.  And stewed.  And I stressed. 

I looked like this...

But, thankfully, the results came back and her A1c was down .6 and her cholesterol was FINALLY in normal range!  WOOT!!!!  Now, to be honest, I have no idea how... we did no changes to her diet.  And we did nothing different bg wise either.  But I'll take it!

In fact, I had no idea how stressed and worried I was until we got the results and it felt like a weight had been lifted from my shoulders!  But for quite awhile, my head was firmly planted in the sand.  I didn't want to talk A1c.  I didn't want to talk cholesterol. 

(Let me take a minute to just say that I went back and forth about posting her actual A1c...  And I decided not to.  I don't think it's wrong if you DO post the A1c... and I actually DID post it on facebook...  It's just that each person is so different and unique.  One person might get a 7.0 A1c through little effort and another might get a 7.0 A1c through an INCREDIBLE amount of effort.  One person might have a 7.0 and it would show fantastic control.  While in another person, it might show WAY too many lows.  And I just chose 7.0 as a random number...  It's like comparing apples and oranges.  So I chose not to post ours.  Because one number is just that.... one number.  Our number.)

I also think I've been keeping my head buried because Friday will be Sweetpea's 3 year Diaversary.

Three years. 

The first year felt like a celebration. The second.... well, we were in the ER and admitted... this one... I'm kinda numb. 

I have certain feelings about it and we are not ignoring it...  I just haven't wanted to deal with it before I absolutely HAD to.  So I haven't.

And then there's been me trying to take better care of myself and exercise.  And that has often left me with a decision... Do I blog or do I work out?  Because it's usually almost 10pm and I don't have time for both.  

I guess it's felt like there's been this big, dark, cloud over us and I'm trying to pretend it isn't there.  Maybe if I don't look up, the tedium, the A1c's, the cholesterol, the anniversaries, the numbers, the tests, the supplies, the fear, the anxiety... all of it will disappear. 

It's a phase.  I can already see the tides are changing a little... 

Before I can blink I'll be back in the swing of things...

But I just may keep a little bottle of sand close by... just in case I need an escape!

 

The Heart Attack

Wow! I'm sitting down at the computer for the first time in what feels like weeks to blog!

I've missed this... I need to share our stories with you.

 I need to tell someone who understands. Someone who gets it.

Last time I posted, I shared a scary experience we had when we were in Florida dealing with a very stubborn low.

I was scared. Nervous. It's been awhile since I felt like that...

J was scared, too. And so was my Mom.

What I didn't realize at the time was that Sweets was scared as well.

We woke her up to drink and eat. When she's that low, it's best to have her awake. If she is not fully awake it's hard to tell if she's lucid and she fights us with the eating a lot more because she just wants us to leave her alone.  So Sweets was awake the entire hour and half.  We were all sitting on our bed (It's two twins pushed together to make a King - the three of us share it in Florida because there are only 2 bedrooms.) watching TV.  Mom and I took turns rubbing and scratching her back.

We do our very best to remain calm and appear to be calm in these situations. 

We don't get upset.  We don't raise our voices.  We don't run around in a panic or voice any concerns out loud.

I thought we were doing a good job at this.

Apparently not.

The next day, Sweets stayed with my parents for a couple of hours while J and I ran to the store.

We were gone about 2 hours.  That's it.

All those Smarties finally kicked in and her bg skyrocketed to about 550 in the early morning hours.  We had brought her back down only to miscalculate lunch carbs (totally my fault).  So she was high while we were gone.

She beeped high and Mom checked her out.  She was in the 300's and it had been a bit since lunch so she knew something was not right. 

But that wasn't all. 

SWEETS was not right.  She was acting off due in part to having a high bg.  But there was more to it than that. 

They were talking and Sweets said something to them about her having a "heart attack" last night. 

"What?" Mom asked.  "A heart attack?"

"Yeah."  Sweets replied.  "I had a heart attack."

Mom reassured her that she did NOT have a heart attack and they discussed what a heart attack really is.

"Do you mean when you were low last night?" Mom asked.  "Yeah - that's it."  Sweets said.

Mom said that it was almost like she had a panic attack.  When she beeped high and Mom didn't know what exactly to do to treat it, Sweets freaked out.  She told Mom that she needed to her Mom and Dad right away and find out what to do.  She said she was all a flutter and unable to relax.  And she didn't really calm down until we got home. 

When I heard this, I just felt the wind go out of my sails.

I try so hard to remain calm and serene and not let diabetes scare her.  The only thing I had done that night that was even a little "un" calm was to tell her that she needed to sit up and eat the Smarties NOW - because she was telling me she was too tired and would eat them in the morning.

At the time she didn't appear to be worried or stressed.  She watched a little Disney channel.  She wanted to go to sleep.  But that was it.

So it makes me wonder...

What else is she worried about that she's not sharing with us?  Is she worried about diabetes?  Does it scare her?  Am I doing something that is causing her to be afraid?

I just don't know...

Sometimes I think that if all we had to deal with was the physical part of diabetes, it would be an easier disease to manage.  It's the emotional part that brings me to my knees much more often.

It breaks my heart to think that she is afraid.  It kills me to think that she worries about other people taking care of her....  No, not just other people - her GRANDPARENTS!  The only people who, other than a couple of wonderful friends, can actually watch her!  I want her to feel safe and secure.  She needs that independence...

I don't exactly know where to go from here...  I try to continue to reassure her through words and actions that she is fine.  I encourage her to talk about it if she wants to.  I'm really not sure what else there is to do...

I suppose it's just a part of raising a child with diabetes. 

She's growing up and she is becoming more aware.  Of course, as her Mommy, there is a part of me that wants to shield her forever!  

But I also want for her to grow with this disease and feel the confidence and pride she will gain from knowing she is able to care for herself - diabetes and all.  I want her to feel that smug, "Yeah, I have diabetes.  But I got this.  I can do anything you can do." 

Baby steps, I suppose. 

There will always be fear.  But as long as we all keep getting back up again and moving forward after fear has knocked us down, we're doing just fine....

Even if we do encounter a few "heart attacks" along the way.


 

Putting Fear in a Box

We had a scare the other night.

It's been awhile since I was scared. Really scared.

But I was last week.

We spent the last week in Florida!  It was wonderful!  We really need the sun and the pool and the beach to recharge our souls.  I grew up going to Florida so it's just a part of who I am.  I miss it when I'm not there and feel a NEED to get back there as often as possible!

It appears that Sweets has also inherited the Florida gene.  She LOVES it there.  She asks to go all the time.  She's happy as a clam when she's there.  She's my little beach baby!

We especially enjoyed swimming and the beach this year as it was our first trip with the pod!  It was so wonderful to be able to just let her swim and not worry about unhooking or keeping sand out of the pump.  She just DID. 

SO NICE.

Of course, even though without the pump attached she always went super high when swimming - we found that swimming tends to drop her like a rock!  So we were working to reduce her basal rates and determine if and when she needed free carbs to hold her bg steady.

I can only assume that this played into the scary low that she had while there.  I really have no explanation for what happened. 

Wednesday night, she went to bed with a bg steady at 113. 

She said she felt low.  We tested.  She was 120. 

We should have listened to her.

She'd had a snack and been bolused for it.  J and I went thru everything again later and we know we counted everything right.  We even took swimming into consideration.  

But...

Practically as soon as she fell asleep, she beeped low. 

We had just tested her less than 10 minutes earlier. 

But when I tested her again, she was 50something.  Double arrows down.

So I woke her up and fed her some smarties. 

Smarties always work.  And they always work FAST.  She didn't like it.  She cried.  She fussed about being tired.  But she ate them. 

But then Dex beeped again.  FOUR beeps.  Under 50.  I tested and she was 43. 

More smarties.  More keeping her awake.

She was lucid.  She was talking and she knew what was going on. 

But her blood sugar was NOT coming up. 

The pattern continued -- test, bg in the 40's or 50's, give smarties, wait.... repeat.

On and on and on....

Long story (not so) short... It took about an hour and a half total.  10 packs of Smarties.  And one juice. 

But she finally came up slightly over 100. 

I was scared.  J was scared. 

At one point my Mom came into our room to see what was going on.  She sat on the bed with us and rubbed Sweetpea's back.  She was scared, too.

I had the glucagon out.  It was sitting right there.  I was ready to use it. 

And it just kept going through my head...  when?  When should I do it? 

Had she dropped any lower, I would have done it.  After our experience last year, I won't ever hesitate to use the glucagon again.  But still.... you don't WANT to have to use it.

It's almost like I'm getting USED to these scares.  They still make me want to puke.  And they still stress me out beyond belief. 

But I'm learning to just keep going.  I'm learning to put that fear into a box and put it high up on a shelf and just keep moving forward. 

Just another night in the life...

The only difference was that this time it really affected Sweets.  THIS time, she remembered it.  And this time, it scared her, too.  But we'll save that for another post...


 

The Whole Truth

There's a little more to the story about why I haven't really blogged in a month.

MOST of it was because we were sick and J was working. That's about 90% of the reason.

But there's another reason, too.

I can't really name it. I'm not sure how exactly to describe it. It's just a phase in our life with diabetes that also kept me from the blogging world.

We go through different phases living with this disease.

Sometimes it's all consuming and seems to take up all of your brain space.
Sometimes it's so frustrating you want to scream and bang your head against the wall.
Sometimes it is annoying - majorly or minorly.
Sometimes it makes you angry.
Sometimes it makes you sad.
Sometimes it leaves you feeling numb.
Sometimes no matter what you do, you don't see the result you wanted.
Sometimes everything goes right and you have no idea why.
Sometimes you feel afraid.
Sometimes you feel depressed.
Sometimes you feel guilty.
Sometimes you feel all of it.
And sometimes you feel nothing.
Sometimes it doesn't get to you.
Sometimes it does.
Sometimes you want to hide it.
Sometimes you want it to go away.
Sometimes it just IS.

I've been in a phase where diabetes just IS. It's just a part of our lives.

It hasn't been ruling my thoughts. It hasn't been ruling my emotions.

We do what we have to do... we still count carbs and bolus and test... But I haven't tweaked in a while. Haven't really had to. Not that her numbers have been perfect. They haven't been perfect. But they haven't been awful either. She hasn't complained much. It hasn't seemed to rule our lives.

 It just IS.

I haven't been in love with D. But I haven't hated it, either.

Ambiguous. I've been really ambiguous.

And I haven't felt much like talking about it.

I know it won't last forever. I know I'll need to tweak here soon. I know something will change and we'll get thrown back into the crazy waves of emotion that go with this disease. I know there is a lot I still have to say about this disease.

Maybe it's been my way of just not dealing with it.

We can't ever just QUIT diabetes. But we can refuse to let it rule us. Rule our lives and thoughts. We can focus on other things. 

I think that is healthy. Even if our attitudes about diabetes are super healthy and our focus is positive and we work hard to enrich the lives of those living with disease.... we still need to take a break from time to time.

Just like Sweets is not ONLY a person with diabetes, I am not ONLY the mother of child with diabetes.

There's more to me than that.

I don't always get to explore those other sides of myself. A lot of those sides have practically disappeared. Some of them may be gone forever. And some might just need a little kick to rise to the surface again.

I guess this phase has been a kick for me to look for those other pieces. Maybe I'm just now ready to go there.

It may not last. I know that.

It's just another phase on this crazy journey we call life with type 1 diabetes.

We Interrupt This Blog...

We interrupt this blog to bring you... LIFE.

Man, life has been keeping us hopping for quite a while now.  And it has seriously cut into my blogging!!

We could probably go back to last FALL... but I'll spare you all those details.

 If you just go to February... Sweets broke her elbow, then she was sick for a week with a low grade fever and sinus stuff, then we took her back to the doctor a week later because her throat was red and her tonsils were swollen and she was still coughing.  They still did not treat her. Then we picked my parents up from the airport.  We celebrated her birthday - about 5 times total including a sleepover party. We took my parents back to the airport.  The following week, she spiked a fever that read 105 on the head thermometer.  It was 103 by the mouth thermometer.  She had a fever of 101 or so for a good five days along with coughing and lots of snot.  Of course, we could not get into her regular doctor so she ended up at urgent care where they said she had the flu and a sinus infection that has been around a while.  I also caught that lovely ick and was had a fever of 101 for 3-4 days.  It's been awhile since I had a fever like that.  This was all during report card testing time.  The next week we parent teacher conferences and so I was working late.  J worked overtime the entire month of March so he pretty much came home, logged onto the computer, and worked until around 11pm each night.  My access to the computer was seriously limited. 

I've left out the parts about how I was supposed to go to Washington D.C. with JDRF for Government Day but had to cancel due to having used most of my days taking care of Sweets and taking her to her appointments.  I hated to do it because I so totally believe in JDRF Advocacy.  But I knew our chapter was in good hands and I do have responsibility to my kids at school!   Then, I also had to back out of a JDRF Promise meeting AND the day of filming we were doing with a JDRF film crew because we all had the flu.  We'd been working on setting this all up for MONTHS.  And we had the flu.

Yeah, it's been that kind of winter.

I know I'm not alone, though.  Pretty much everyone here is sick.  The ick seems to be going around and around and around...

And life just HAPPENS, you know?

So that's where I've been!  Unable to get to the computer and too busy taking care of a sick kid and my own sick self to hardly notice!

It's not all germs and allergies, though...  Last week was our Spring Break and we spent that in Florida with my parents!  And it was wonderful!  We hope the warm air and sea breezes killed all the germs we've been carrying around - and that our house aired out, too!

Anyway... I'm back!  Ready for Easter and the last quarter of the school year!  Ready for Spring and increased activity and wonky numbers as a result!  Ready for another arm draw and labs and a trip to the Endo.  And ready to blog it all out!

I hope you're ready, too!

ps...  Some people reported problems with the last post about not being able to read everything.  After looking into it (because I've always been able to see it all), I found that Blogger does not support Internet Explorer anymore.  So, if you use IE as your browser,  you might have problems.  Try using Google Chrome or Firefox and see if that helps...  And thanks for your patience and understanding!