This is titled 'Frustration'.

Ah diabetes. Diabetes, diabetes, diabetes.

What else is there to say?

This has to be one of the most frustrating, challenging, non-conforming, difficult 'thing' I've ever dealt with in my life. I am sad. I am frustrated. I am sick and tired of the constant shift in blood-sugar tides that my little brain can't seem to comprehend.

None of it seems to really make sense.

Writing something off as "just a number" doesn't seem to be a good solution for me. I can't see a 280 and just say "huh, there it is. Let's correct it and move on". Especially not when my little 4 year old bounces around like a tennis ball in a heated match. I can't keep up with the constant shift her body is making. I could do the same thing, the EXACT same thing every day of the week and see different results, everything I think I'm doing right being completely wrong with maybe one or two 'sorta right' moments in-between.

 I feel under-supported by my Endo-team. I feel like I don't have anyone to really 'talk' to about the numbers, and once every 3 months isn't near to cutting it for us at only 7 months in the game. The process of calling a nurse line, leaving a message, HOPING they call you back the next day (and if they do - it's always when you're putting someone to bed w/o your phone, or taking that 2 minute shower)...  I hate that I don't know the explanations or fixes for the issues we frequently run into (different issues, just frequent issues in general), and it takes weeks to get any kind of real response formulated.

Sometimes I hate that there are apparently NO good answers - just 'that's diabetes'.

That's not a good enough answer, damnit. Not by a long shot. Not when your 4 year old little girl depends on YOU to care for her because she can't and whatever you may be doing wrong now, or not responding to quickly enough, or often enough to, can cause her great trouble down the road. How long a high is too high? What if she has insulin on board - LOTS of it - but she's not going down for some unforseen (non-carb related) issue? What if it's NOT sickness and she's STILL high despite double, triple, quadruple her normal meal ratio of insulin being given?

I feel like throwing my arms up and calling a time out but there is no such thing. My brain can't shut it off. I can be in a conversation about any one of a million things and in the back of my mind I'm still thinking about carbs and what caused this or that or what else we should try to do to fix her 'highs after lunch at pre-school every single time' issue.

I'm tired. I'm only 7 months in, and this is her LIFE, and *I'M* tired. Really? I know that probably as an adult and once her constant state of growing, hormones etc level out it will probably a little less crazy, at least I hope for her it will be, but I'm already just burnt out and it's only the beginning.

I don't like not having the answers I need. I don't even know where to try and find them half of the time, and that's almost more awful.

Yeah, I'm that mom right now. I'm venting. I'm feeling sorry for us while still trying to figure out how to successfully 'fight back'. It's a constant struggle, it's a small breath of relief if we get a day, or even half a day of 'normal' numbers.  I feel like that's rare.

I'm still waiting for insurance to approve a pump we should clearly have. I started the process, which I was told typically takes 1-3 weeks, about 2 weeks before we left for Maui. So about close to 7 weeks now, we've been in this back and forth BS process. What a joke. And do these people have anything but FAX machines? Who has a fax machine! Get with the program! Welcome to fricking 2012.

I have a 2nd 'pump start' appointment for the end of June and I had better be able to keep it this time. I already had to move it back a month once, I don't see what the problem is here. Pretty standard process, we meet all of the criteria. It's just irritating. I feel like calling someone over there and asking if they'd like to be the one responsible if my child ends up having a seizure or in a low coma because of their stupid lazy paperwork process. She's a real person, and I want her on a pump to help try and achieve better, more manageable results. I'm starting to see the uphill battle we're all going to face from here moving forward. It's bleak, people.

Sorry for the downward post here, but it's my blog and this is where we are.  Add in a 2 year old who has found his voice (his voice mainly involving screaming, yelling in frustration, or crying hysterically over something) and uses it more than your average bear and I have to admit I'm at ropes end right now. I just need something to be easy. Just for a little while. Even just a little easy would be ok. Really.

One of 'those' moments.

When I say 'those' moments, I am probably typically referring to a time when I am remembering what it was like before diabetes. And it's funny, the little things that you take not necessarily for granted but just genuinely shouldn't and wouldn't have to think twice about under normal healthy-life circumstances.

Mothers Day for some reason felt bigger to me this year. I added a new badge (if you will) to my list of mommy duties... a pretty major one. Not just your bumps and bruises nurse badge, but the external pancreas badge. It's been very hard fought, and sometimes I still fight for it, but it's been a big deal in my mom-world life. No, I'm not trying to toot my own horn here, I'm trying to celebrate the ability to adjust and evolve! As a person, as a caregiver, and as a mommy to a little diabetic girl who really does need me every single day right now.

This is a big load to bear, worth it - obviously, however daunting and all encompassing it can be at times. I remember last year for my 30th birthday my very dear friend, Bethany, and I took a whirlwind 3 night vacation to Scottsdale for a spa weekend getaway.  We joked about making it an annual getaway (or at least making AN annual getaway!). It was fabulous! So much has changed since then. As much as I would love to get away I'm not sure how easily I could do it (and I don't mean logistically... I mean I don't know that I could do it).

Anyway, a wonderful day was set for me. I felt so appreciated and honored, so loved. I had time off (Yay!), I got hand picked flowers (double yay!) and a thoughtful card from my wonderful husband with a special surprise inside. In the afternoon we decided to go downtown to check out the antique fair going on - a very mothers day-ish thing to do, I was excited. Sadly, Sierra wasn't feeling it. Not because of any diabetes related things, she was just totally being 4. Ah 4. We lasted about 5 minutes in the fair before dragging her to gap to get new sunglasses because apparently it was too windy, and too bright. And she needed water because she was dyyyiiinnnnggggg of thirst right that minute. So we decide to go to a local pub, grab a beer and a water for her and just relax before dinner.

Here's the 'moment'. We're both hungry. We don't have her insulin on hand because it's a short outing and she had a snack before we left - and we're eating dinner in 30-40 minutes anyway. Sadly... the option to buy food for ourselves wasn't going to pan out very easily. What do you get? Theres nothing on a pub menu that she could nibble on (and what 4 year old wouldn't want snacky greasy foods placed in front of them on a platter anyway?). And there it was... ahh the blissfully easy days of pre-diabetes. Enjoy it folks. The ability to grab a snack for you and/or your kid at will without having to hunt down olives or string cheese or straight up meat is a time treasured thing I miss. Thankfully once we are on the pump we can work around this easily, but on our current program it's a little bit of a crappy reminder.

Anyway I digress, I don't know where I'm going with that. I just mean to say a lot has changed for all of us. Especially Sierra. Hell, our whole family. I wonder often how this may effect Max, I mean for better or worse he's along for the ride. I wonder about her future, hoping and thinking of a bright spot where she will be everything she wants to be in life. I wonder about her additional challenges, her relationships, her learning, the effect her lack of a functioning pancreas.

I think about all of these things on a fairly regular basis knowing full well I can only do what I can do, and so can she. It's still difficult to wrap your head around sometimes, even living it day in and day out.

These moments pop up now and then and really all you can do is shrug, give a sad smile, and move on. So I have to read every label, count every goldfish and grape - it could be so much worse. I'll take it. And she'll be fine.

Now if our pump would just arrive already...

Oh, hi! (or Aloha?)

Sooo, it's only been (nearly) a month since my last update. I know you've all just been on the EDGE of your seat waiting for a new post....haha... so here it is.

Hawaii has come and gone and after a good month of parental stress regarding traveling with a little diabetic I couldn't be happier to report a fantastic trip with pretty darn good numbers to show for it! Truthfully, for the first 4 days of our 7 day trip she was almost NEVER out of our desired 100-150 range. It was crazy.  That never happens four days in a row, nevermind with me having no true idea of how many exact carbs we're looking at during the breakfast buffet and random bread sizes etc we experimented with the whole trip. I'm feeling pretty proud right now, a moment of 'pat yourself on the back' if you will. I think we had one bottle of lantus go bad due to heat (although I carried an icepack in our insulated lunch box that we use for her supplies, I think one day at the pool it just didn't cut it).  She didn't have any lows under 60 - which is wonderful for us, and that didn't even show until day 5. So awesome. We did start to see some pretty high numbers when the Lantus petered out, but that was easily remedied with our backup! Preparation paid off!

This was truly a redemption trip of us, for those of you following (or new), you'll maybe remember that our last trip to Hawaii (Kauai) was October of 2011. That's right, the week before she was diagnosed and was clearly off. She looked thin, was drinking ridiculous amounts of water, and hardly sleeping. So... while I know we had a good trip and I wouldn't take it back - it's absolutely overshadowed by the whole coming back, finding out she was diabetic and spending 3 days in PICU thing. I see photos and know we were enjoying ourselves but think "oh, that was when she was pretty sick and we had no idea". This trip made up for it, Hawaii redeemed :) Like it's Hawaii's fault right? Hah!

I started the pump-obtaining process (Animas Ping) about a week and a half before I left. Theoretically we should've had it a few days ago so that we could get started and attend a pump start appointment on May 17th - sadly, it's still stuck with insurance so I don't have that pump in my greedy little hands just yet. I had to postpone, hopefully no later than mid-June but I'm waiting to hear back. I'm going to wear the pump for 7 days during the saline trial, then transfer it to Sierra for the remaining 3 days only (who wants to be the one to explain to a NOW 4 year old that we're going to wear the pump but still have to do shots for 3 days? Cruel I tell you! I get it, but cruel none the less).  That way I get used to pushing the buttons and doing a 'set' change (which is what they call when you put in a new tube/needle and fill the pump w/ new insulin). You typically only change every 3ish days, assuming all is going well, so that will be a big benefit assuming we do it correctly and don't have trouble with kinked tubes or other things I hear about. We'll hope for the best, it's going to be frustrating at times, as are shots - though I feel like I have a pretty good handle on those these days - but it's a learning curve and I'm prepared to take it on.

An interesting point out of left field for you - I still get up 95% of nights between 2-3am to do Sierra's blood sugar, often she now sleeps through the pokes (thank goodness), and she's great when I have to wake her for the random low so she can consume some sugar - but I think my body is sadly adjusted to never getting a full nights sleep. I'm used to just being tired, and maybe once or twice a week it completely catches up with me and I feel like crying when I have to roll out of bed, but I do it, and life goes on. Funny how you adjust, isn't it? Sometimes I just say up until midnight and if her number looks good I'll let both of us sleep a full 7ish hours, which is FABULOUS, but I try not to do it too often because then it's even harder to get up the next night at 2 again. I think the hardest part of sleep deprivation (even when adjusted to it) is the 3pm hour. Right when Max is getting up from his nap and I'm 100% ready for one. Ah well. What are you going to do, right? Those friends of mine out in the non-virtual world, if you ever wonder why I look so damned tired or 'busted' (as Frank and I lovingly put it) at times this is why ;) Makeup can only do so much some days! I'm usually ok though. We're adapting pretty well, I suppose.

And now? A virtual slide show!

Until next time... Aloha!