Sunday, May 19, 2013

My Three

Dblog Week Day 7 - Spread the Love

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.
I have a confession to make, all my posts, save this one were written on Mother's Day.  My amazing husband wouldn't let me do any chores or anything that even resembled work, so instead I had some uninterrupted writing time.  I know this week was going to be busy, so I decided being proactive was a good thing.

And I was right.  This week has been pure chaos.  And I feel bad that I haven't had time to read more blogs, but I tried.  And here are three that I rather enjoyed:

The Rockin' Ink Star
Michelle's little sweetie was diagnosed at just 13 months.  They almost lost her.  Read her diagnosis story, it will remind you just how important it is to listen to your gut.

The Diabetic Doc
Not only is she a Type 1 herself, she's studying to be a pedi endo.  I really loved reading about her unique perspective.

Queen Mother and her Sweet Type 1 Princess.
I found this blog on one of the last days and really enjoyed reading... especially The We the Undersigned post.

Thank you, thank you, thank you to Karen for making this all possible!  I have really loved "meeting" new bloggers!

Until next year...

Saturday, May 18, 2013

But is it Art?

Dblog Week Day 6 - Diabetes Art

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!

Let me start off by saying I am not artistic.  In the slightest.  This subject made me feel itchy.  But it's good to get out of your comfort zone once in awhile.

This one goes out to everyone who has asked me if Elise's diabetes is "under control now that she has a pump".  Or tells me it "much be so much better now that we have a device to handle all the diabetes stuff".

I call it "The Pump Speaketh True"

Friday, May 17, 2013

The grass seems a little greener

Dblog Week Day 5 - Freaky Friday

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?

There are so many chronic illnesses out there, it seems every month has it's own illness awareness. Some are familiar; epilepsy, asthma, MS, Crohns, and arthritis.  Some are not.  I have a friend with Ehlers-Danlos Syndrome.  Never heard of it?  Neither had I, until she was diagnosed.  If you want to find out more about it, you can click here (coincidentally, May is EDS awareness month).

My point is, you don't know the crap that comes with a disease, unless you've lived with it.  To me, asthma looks relatively easy to deal with.  Having trouble breathing?  Use your aspirator and you're good to go.  I say all this very tongue-in-cheek.  I know people who have kids with asthma, and it's never that simple.  It just looks that way to the uninitiated.

So I have a hard time swapping out my daughter's disease for something I haven't a clue about.  But I do know of a chronic illness that is rather benign, Hyper/Hypothyroidism.  Because I've had both.

I was diagnosed with Grave's Disease as a teenager, and had my thyroid destroyed twice with radio-active iodine.  My thyroid barely functions and now I take a pill everyday.  Seems simple, right?

Except, as with most illnesses, it's not.  My thyroid goes crazy when I'm pregnant.  To the point that my doc is concerned about miscarriage.

My levels also fluctuate a lot.  I have to get tested often to make sure I'm on the right dosage.

And my body doesn't covert T4 to T3 very well, making me feel hypothyroid, but lab draws show my TSH as in-range (most docs won't check your T3). Most Endos will not prescribe anything for low T3, and if you can't find a doc who is well-educated on this topic, you end up feeling crappy, even though you are on the "right dose"

Why am I telling you all this?  Because even though I would pick hyper/hypothyroidism for my daughter over diabetes, I think it's important to understand that even the most simple of diseases are not.

And having learned this, I now try my hardest not to make assumptions about other people's illnesses.  And I'm careful about the questions I ask.  But I do try to ask questions because I know I'm always touched when people try to learn about diabetes.

But one pill a day is definitely better than what she deals with now.

Thursday, May 16, 2013

Cue the Rocky Music

Dblog Week Day 4 - Accomplishments Big and Small

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.).  

Like yesterday, this topic had some many to choose from. We have had so many triumphs over the past 5 years.

The first time I took Elise to a restaurant by myself.

A day of BG nirvana.

Elise going 40 days without crying at shot time.

Having another baby.

Giving Elise a pep talk that has some staying power.

Taking a 9 month old and a 4 year old across the Atlantic Ocean to Portugal for 17 days. Of course diabetes tagged along too. Did I mention that we were still using NPH?

Starting on a pump.

Sending Elise to a non-d summer camp.

Elise's first play date sans Mama.

Team Elise waking in 4 countries on 3 different continents.

Having yet another baby... who decided to arrive a month early. 

And those are just a few.  But I think one of the best triumphs, one that has significant meaning since today is Elise's last day and tomorrow (the day this post goes live) she will be graduating; is the day Elise started school.

I could write a series of posts on how amazing this school has been... one day I will.  But right now I can't help but be transported back in time. To almost 3 years ago when one very scared Mama left her little girl who had never been away from her (except when said Mama was in the hospital having a baby) in someone else's hands.

Once upon a time, I thought pre-school wasn't an option.  And now I am so glad I took that step of faith together with the school, and let Elise have some independence. It has been the BEST thing I ever could have done for her.  Elise and I have both grown so much from this experience.

While I am so sad that this chapter in Elise's life is closing, I am thankful for how it has prepared me for the scary things yet-to-come. 

Kindergarten... you're next.
Elise, on her first day pf pre-school. Was she ever really that little?

Wednesday, May 15, 2013

Not fade away

Dblog Week Day 3 - Memories

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.

This one was a head-scratcher for me... most memorable moment in the last 5 years? There have been so many... how do I choose just one?

Since I must, I'd have to go with the day that started it all.  Elise's diagnosis day... September 6.

It was just two days after her first birthday.  We had a small party with some friends planned for that day, but first we had to take care of some troubling business.  At her well-child visit the day before, they had found sugar in her urine.  They asked us to come back in for a re-check.

The weird thing about our whole experience at the pedi is that we didn't find out the results until after we went home.  I don't know if they suspected diabetes right away, and if they did... why not do a finger poke?  I've often wondered why the events played out the way they did, but I can't find any fault with the doc. Who thinks to look for type 1 diabetes in a baby?

Anyway, once we were home we received a call for the pedi telling us there was still sugar in Elise's urine and she wanted to send us to a hospital to do a blood draw on Elise to find out her A1C.

I have to interject here and say that this was a Saturday, so by this time the doctor's office was closed. 

To the Children's Hospital ER (at our doc's suggestion) we went, and they were rather perplexed as to what to do with us.  This was a new location that had just opened up 3 weeks prior. We finally got the blood drawn and were sent home.  Again, knowing what I know now, I would have questioned doing all this. 

It was in the middle of Elise's party that we got the call... diabetes.  Go directly to the hospital.  I was in total shock and the details of our 5 day hospital are a blur.

But I will never forgot that phone call.

Or the lump that formed in my throat and the fist that gripped my stomach.

The tears that fell.

Even 5 years later, my heart hurts the exact same way it did that day our lives changed forever.
I wonder if it always will?

Tuesday, May 14, 2013

His name would be Fluffy McBiteyerass

Dblog Week Day 2 - Diabetes Wild Kingdom

What is the ideal diabetes service animal? Think beyond the obvious and be creative in explaining why your choice is a good one. For example, maybe a seal would make a good service animal - it flaps its flippers and barks every time you get a good blood sugar reading!

Today I'm throwing my wild card down.  It's going to be short and sweet due to life being so coo-coo bananas right now.

My ideal diabetes service animal would be a lion that I could sic on anyone who makes stupid comments about diabetes.  Maybe then people would keep their mouths shut instead of saying something like, "don't you have diabetes?  Are you sure you should eat that?" to my daughter.

I am D-Mom, hear me roar!

Monday, May 13, 2013

One size fits none

Dblog Week Day 1 - Share and Don't Share

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?

I think we're pretty lucky with our endo. She knows that we understand and have a good grasp on what we're doing.  She lets us do our own thing, but is there for us when we have questions.  We've done some pretty unorthodox things in the past and she trusted us enough to let us go for it.  I can't even remember the last time I spoke to a CDE.

That being said, I remember back to when Elise was diagnosed, they told us to treat lows with 15g of carbs.  Not knowing any better, we went with it.  In a 12 month old, 15g of carbs can turn a 60 into a 460 in a hurry and we soon figured out our own "sliding scale" for corrections.

In our last appointment, the endo and I were going over Elise's school plan when we got to the section on hypoglycemia management.  She skipped over the 15g part, so I stopped her and let her know we don't treat that way. She paused, raised her eyebrows and asked, "really?" in disbelief.  I explained and we moved on.

Diabetes is not a one size fits all disease.  I think endos and CDEs get that to a point, but I wish they would get it a little better.  When your baby is diagnosed, it is NOT the same thing as a teenager being diagnosed, yet they treat it the same.  There are so many of the "rules" that we don't follow, but we have figured it out on our own by living with diabetes everyday, and we have earned the right to manage it in the way that works for us.

Like I said... we're lucky.  But I hear of so many other parents that get talked down to for not following the rules.  For doing things like checking their child's BG during the night.  Maybe if that endo had ever seen a 32 for no apparent reason at 2:00 am, they might change their thinking. 

We know our children, please trust us that we will do right by them.

Friday, May 10, 2013

Why Diabetes sucks today... vol.2

Technically, yesterday is the day that sucked, but since I didn't stop until I collapsed into my bed at 11:00 pm, this post had to wait.

I could tell the day was going to be full of suckitude from the get-go.  The meat I had planned to use for dinner had spoiled, and leaked "meat juice" all over my fridge.  And as I was getting a bottle prepared so Fred could feed Lucas while I took Elise to the doctor, the entire bag of milk spilled all over the counter.

It was like a knife to the heart, because breast milk is the other liquid gold.  Am I right, nursing mamas?

Anyway, all that had nothing to do with diabetes.  What DID have something to do with diabetes is Elise's appointment  Made because an infection (from a pump site) under her skin on her bottom was just not going away, even after three appointments, three different antibiotics and a myriad of creams.

The decision was made to drain it, but the doc was very hesitant to do it.  In her words, "she's so young and I'm not going to lie, it hurts.  I just don't know if I want to cause her that much pain."

The option of taking her to the children's hospital where a surgeon could do it while she was sedated was offered, but logistically; a nightmare.  So after talking to Elise about it, she decided to be brave and do it right then and there.

What followed can only be described as 10 minutes of pure hell.  There are no words to describe the screams that emitted from my daughter.  I kneeled beside her at the head of the table while tears streamed down both of our faces.  All I could do was stroke her hair and hold her hand, hoping she could hear my whispered words as I tried to soothe her.

Over and over she wailed, "please stop hurting me, please stop hurting me!" But she never moved... never flinched, never squirmed.  She just laid there as the doctor gave her multiple shots to numb the area and then cut the infection out.

All I could think was, "she goes through so much... why this too?  Why does diabetes have to cause her so much pain?" And once again, I was blown away at just how brave she was.  Even the doctor was amazed.

Yes, she IS brave... takes almost everything in stride, and today we were back at the doctor to make sure all was okay.  Any other kid would be screaming the moment we entered the parking lot, and certainly wouldn't let the doctor touch them again.  Elise did it all, with a smile on her face... because she isn't like any other kid.  And that's awesome, but...

It's also why diabetes sucks today.

Thursday, May 2, 2013

Things Diabetes has taught me this month... April edition

-As much as I try to tell myself I don't care, and that it's NOT a reflection of how much work I put into taking care of my daughter, a good A1C for Elise puts a smile on my face.  We just had her endo appointment last Thursday, and when the number popped up on the machine, I stole a glance and the grin automatically floated to my lips.  Winning!

-It also pisses me off to think that it could be better if we didn't have to fight those post-change highs that we get with the pod.  I've tried everything under the sun, and what works one time, won't work the next. I'm curious about when (if) we ever get the new smaller pods, if we'll be dealing with the same post-change highs.

-A good, working phone is a necessity when you have a child with diabetes.  My phone just gave up the ghost.  It was a fine phone; I could use it to call, send a text or two, but that was about it.  Oh yeah, it was also a nifty calculator and alarm clock.  But a few weeks ago it started acting all cray-cray on me.  The clock would suddenly be an hour behind, then it would go back to normal.  And the alarm for the middle-of-the-night check wouldn't go off. So I handed it to Fred and said, "FIX IT!" (but totally in a sweet way).  Instead he came home with an I phone for me.  Can I tell you a secret?  I'm kinda in love with it.

-Going from two to three children has not been without challenges, but it's proving to be a pretty easy transition.  Lucas made a crazy entrance into our world, but has turned out to be a wonderful little guy that has fit perfectly into our family.  I remember being so scared to have another child after Elise was diagnosed, but I am so glad I never let that fear dictate my life.  Otherwise, I wouldn't have this sweet face greeting me every day (and yeah, he's pretty much like this every day).