Underwhelmed

Yesterday was report card day. Our first one since we started pumping. I was bracing myself for a huge jump since we still are having trouble nailing down Elise's settings. The girl has no patterns whatsoever.

We had been seeing a lot of highs after working our way back from that weirdness of lows a few weeks ago. Really I had no idea what to expect, so I did the old "hope for the best and expect the worst." I'm a realist like that.

6.9

Huh. Which pretty much was my response when Dr. T announced the number. We agreed that the 9+ days of wack-a-doo lows probably had a lot to do with it, but she stressed that she thought we were doing a good job.

As Randy from American Idol would say, "I'm just not feelin' ya dawg."

The whole appointment left me decidedly underwhelmed. And I think one of the things bugging me (and I told the doc this), is that I feel ineffectual and inadequate.

You see, the beauty of the pump is the ability to fine-tune and micro-manage numbers.

And the horribleness of the pump is the exact same thing.

Because sometimes all that control is so freaking overwhelming, it makes me want to cry. I constantly ask myself, "am I doing enough?", because I know I could be doing more than I am. I feel like I've become a bit complacent... but that doesn't exactly describe it.

It's sort of like having a huge clean-up job to do and not knowing where to start. And when you try to start cleaning up, more piles of dirt keep popping up. And all you want to do is just lie down and go to sleep, hoping that when you wake up, the mess will be gone.

Dr. T did say something that struck me though. Sometimes you have to sit still and do nothing. That, I think I've got down to a science.

What I have to learn is, to be okay with it.

***I think I need to be more clear. Any other day, I would happy with 6.9. In fact, I went back and looked at our last A1c and it was exactly the same. It's just that I don't think that number reflects my effort (which has been both a lot and not enough at the same time). I think what I'm trying to say is I should be happy about that number, but I feel numb about it more than anything.

Like the deserts miss the rain

Thank God that week is over. I've been MIA and for good reason. Fred was out of town and my kids decided to try and kill me by not letting me sleep. Every. Single. Night.

Whether is was Elise up for 3 hours crying, the dexcom alerting to numbers that were off by sometimes as much as 200, stubborn lows, or Mattias waking up every 90 minutes, which happened every night while Fred was gone. Combine all that with the usual feeding problems and it was a nightmare.

But he's back, and I am so, so thankful. He is an awesome husband and does whatever it takes to support me. Even though his flight came in at 12:30 am, almost two hours late, he came home and talked me down from a very tall ledge (for reasons I'll get to in a moment). Mwah! Love ya, Freddie!

I am also thankful for my friend Liz, who came over twice, brought me lunch, and listened as I did the "ugly cry" for two hours. She also gave me some very wonderful advice, which I appreciate even more because I know it wasn't easy for her to do, because she was unsure of how I would take it. Thank you Liz, it's the REAL friend who will tell you the stuff you don't necessarily want to hear.

I started taking a prescription drug for my nursing issues. I was very leery about taking it because of the side effects, but after learning Mattias hadn't gained any weight in 3 weeks, I felt I had no choice. It has been wonderful and awful all at the same time.

Wonderful because my supply has almost doubled and I've only been taking it for a few days. Since I started, Mattias stopped waking up every 90 minutes at night, and only woke up once to feed. Ah-MA-zing! He also seems more content during the day.

Awful because the side effects really are terrible. During the day, the fatigue is so bad I feel like I'm going to fall over. I can't concentrate and can barely form a coherent sentence. And at night I lay in bed, suffering through panic attacks. The night Fred got home, it was really bad. I had gone to bed at 9:30, and was unable to fall asleep (read: pass out from sheer exhaustion) until almost 3:00 am. I cannot even begin to explain how horrible it felt. I was so tired, but couldn't sit still. At one point I remember thinking if removed my pjs and went walking out in the pouring rain, I would be okay (yeah... weird. I know). Thankfully, Fred came home and sat with me, attempting to calm me down.

After all that, you'd think I would stop taking it, right? Not so much. I did cut my dose (after consulting my doctor) in half, but I have my reasons for continuing.

The way I look at it is this; as parents of a diabetic, we don't have to wake up 2 - 3 (sometimes more) times a night to check our kids. In fact, some endos don't understand why we do it. But we do. For our kids. For their safety. For their health. Often at the detriment of our own. Because we would do anything to avoid the unimaginable.

Now Mattias will not starve, but to me his health is at risk. He started in the 50th percentile for weight and now he's in the 10th. He has feeding issues and I will do anything I can to help him.

The good news is the lower dose doesn't make me quite as crazy. I still get agitated, but I can deal with it. I'm also not going to take it at bedtime, because that I can't deal with.

If you've made it this far, congrats. I know there has been a lot going on in the DOC lately, but I haven't had time time or energy to blog, read other blogs or comment. Those of you who are going through the fire right now, please know that you are in my prayers.

Hopefully I'll get my crap together soon. Because I miss you guys.

March Madness

Nope. This is not a post about basketball. The title just seemed very apt for my life lately. A lot has been going on, hence the hush that has befallen my blog. Most of it falls in the not-so-good category. If this keeps up, I think I'm going to loose what is left of my mind.

The Not-So-Good:

-Mattias has gone on strike. Nursing strike. Eating strike. Pooping strike. I wonder if he thinks I'm trying to poison him... the problem is, he will not take a bottle. He hasn't figured out the sippy cup. My options are pretty much limited. Today, I used a syringe to feed him because he hadn't had any fluids in about 6 hours.

-He also won't take my pumped milk. I have high amounts of Lipase (an enzyme that breaks down fat) in my milk. About 20 minutes after my milk is pumped, it starts to taste soapy. He refuses to drink it. The only way to get rid of it is to scald the milk right after pumping it. To say it's a beating is a bit of an understatement.

-All this nursing stress (combined with the other stuff) is causing my milk to dry up. I'm doing everything I can to keep it up, but it's not easy. Plus, if my milk does dry up, how on earth will he eat, considering he won't take a bottle or sippy cup?

-Elise's numbers are going crazy. Trying to find a spare moment to sit down and look over her logs is hard.

-Fred is travelling a lot lately. It sucks doing this all by myself.

-No bites on the house yet. Not even a nibble. We've had three showings and it's been really rough getting the house in order and trying to get out of the house while it's being shown. The other day, it was booked for TWO FREAKING HOURS (over lunch time... great). Towards the end, Mattias was so tired and I needed to try and nurse him, that I just went home with 20 minutes to go. Thankfully they weren't there. To top it all off, their critique of the house was, "we don't want a two story". Then why the %*&! are you looking at my house WHICH HAPPENS TO BE A TWO STORY? STOP WASTING MY TIME!!!

-I'm am just one big ball of stress. My jaw is permanently clenched and my shoulders reside somewhere up near my ears. The littlest thing will set me off. Like the guy who ran a stop sign to cut me off and get in front of me in the drive-thru (then proceeded to give me the finger when I honked at him). If not for little eyes, I think I would have jumped from my car, pulled him out by his nasty white wife-beater, yanked said wife-beater up over his face (think hockey fight), and started pummeling him. Never cut in front of a red head.

The Good:

-I finally won something! Heidi was giving away a Daily Devotional book and a Starbucks gift card in honour of Bekah's D anniversary... and I was the lucky winner! Thanks Heidi, I've been meaning to email you to let you know that I had received both items, but my email inbox is another source of stress these days. Now, if Starbucks would only deliver.

-Tomorrow is another day. I just need to keep holding onto the fact that it has to get better... right?

That's all I've got. Sorry for the downer post. Here's hoping that I'll be back to my shiny-happy self soon (or as shiny-happy as I get).

Blurgh

I'm not sure "blurgh" is really a word, but it's how I'm feeling. Tomorrow we have our endo appointment, and usually I have a pretty good idea on where we stand. But for once, I have no idea.

Hopefully we'll get some answers on why Elise's BG is soaring and plummeting at dinnertime. She can go from 130 flat to 300 double arrows up and 150 double arrows down all in the span of an hour. That cannot feel good. We have tried all sorts of tricks (short of giving her two shots), and nothing seems to be working.

The other night when she had her skating lessons, I withheld her shot for about an hour after she started eating. She was in the 300s when I put her on the ice, and when she came off 30 minutes later, she had double arrows down on the CGM and her BG was 82. Blurgh.

(I'm even thinking of giving her a low-ish carb meal - about 20g - for dinner, and not giving her a shot at all, just correcting at bedtime on skating nights. Anybody have any thoughts???)

We'll also be discussing pumps at our appointment, and I'll be trying to weasel out of pump classes (at least one of them that our endo makes you take). A pump seems to be in our imminent future, but I'm not looking forward to trying to figure out which one to go with and then starting the learning process over again. The mere thought of it exhausts me. Blurgh.

Today Elise told me her heart hurts. What the crap does that even mean??? Blurgh.

And today is Elise's pre-school teacher's last day. Miss C has Type 2 Diabetes (dx about 1 1/2 years ago), and she's having trouble managing her BG. So she's leaving her job to get a better handle on it. If you ask Elise what her favourite thing about school is, her answer is, "Miss C!"

I can't say enough about how this woman has helped Fred and I to feel completely comfortable with leaving Elise with anyone for the very first time in her life. Because of her, we were able to take this step, and Elise is so much better for it. Miss C went above and beyond for us, and I am so sad that she has to leave. I understand, but I'm still sad. Today Elise told me, "I'm going to miss Miss C!" Blurgh.

My in-laws are coming tomorrow and my house is one big trash heap. Instead of complaining via a blog post, I really should be cleaning. So I'm off to find my vacuum.

Say it with me... BLURGH!

Maybe if I ask nicely...

Dear Diabetes,

I wonder, do you have a pact with the universe to bring it at the most inopportune times? To kick us when we're down? Do you see us in difficult situations, call up the universe on his cell phone and tell him, "it's go time!"

Because that's what it seems like to me. Realistically, there's never really a good time to deal with you when you decide to rear your butt-ugly head. But really, some times are better than others.

Like, why do you decide to crash Elise's BG while I'm nursing and alone? Kinda hard to treat a low BG while you have a baby attached to your boob. And do you know what happens when you pull the baby off in the middle of you milk letting down? Milk shower for everyone... YAY!

Or take for example the other night... it's just me, all by my lonesome, and it's time for Elise's BG check, snack and shot. Mattias also needs to eat and is getting quite fussy. So I check her BG, make her snack, prepare her shot, then settle down to feed Mattias while she eats. For some reason, she decides to get upset about something, drop her yogurt all over the carpet and then start to scream. Which freaks out Mattias; he stops feeding and starts to cry. Then spits up all over me and the sofa. And then refuses to feed.

Meanwhile, I have no idea how much of her yogurt Elise has eaten, how much is now on my carpet, how how many carbs I need to replace. Seriously... do you find situations like these humourous?

Or how about this past Friday... date night. I use the term "date night" rather loosely since dragging 2 kids and three bags o' crap to dinner with you, is in no way a date. But it's okay, because someone else is doing the cooking.

So why, 30 minutes after dinner, is Elise's CGM telling us her BG is 48 with double arrows down? And why while we're driving? Do you know how hard it is to check a BG while in a moving car? Of course you do... that's why it happened this way. And why, after stuffing 20g of smarties and fruit snacks in her, does the CGM still read LOW with a slanting downwards arrow? And why won't Mattias stop SCREAMING?

Look, all I'm asking for is a bit of a break. I'm tired. I'm beaten down. I'm stressed and I'm sad and I'm struggling. I just need you to go sit in the corner and behave for a bit, okay? Please?

Thank you for your attention in this matter.

Sincerely,
Joanne

Panic

You'll have to excuse me... I'm having a bit of a moment right now.

As in, I'm freaking out. With a capital FREAKING and a capital OUT.

It dawned on me today that my due date is in exactly 3 months, although the actual day will be a lot sooner because of the fact I have to have a scheduled c-section.

And were are so not ready.

We are not ready in the usual ways; we still need a tonne of various baby accoutrements, there are rooms to rearrange, logistics to figure out... a name for the baby. But that's not what has me in the midst of a panic attack.

What really is scaring me is that we have no plan dealing with what to do with Elise when it's time for this little guys arrival.

The original plan was for my Mom to come and help out. That looks like it might not happen, and unfortunately there is no plan B.

Fred's Mom has offered, and I love her to death, but she has never stayed with us for more than a few days. She has never tested a BG, counted a carb, checked for ketones, or given a shot. It just won't work to have her come is a few days early and receive a crash course on diabetes. It's not fair to her, or to Elise.

Laura and Jessica have offered to help, and again... I love those girls, but they have their own burdens to bear. Plus, they both live about 30 to 45 minutes away from the hospital, and that's just too far away for my peace of mind.

Do I sound like I'm being high maintenance? I've struggled with that, but I think it all boils down to this; Elise has never been away from me for more than about 4 hours. And the first time we're going to be doing this is at a time when I'm going through something very stressful (surgery, birthing a baby etc.). I don't think I need an added stress at that point.

I think what kicked all this panic off was the rough night we had on Friday. It actually started when she woke up from her nap at 42. From there she was 70 at bedtime, and through the night we struggled to keep her above 60. We checked her almost every hour, and no matter how many extra carbs we gave her, she kept falling low. It was a nightmare, and who can handle that but the ones who have been dealing with it for almost two years now?

I hate this disease and how it rules our lives. How I can't even look forward in anticipation to the birth of my son, instead fearing and dreading the day because of how diabetes may interfere.

Out of the loop

Wow, I feel so far removed from what has been happening with all you guys. Life has been crazy since we returned home and I haven't really had a chance to catch up on all your blogs. It might take me a month, but I'll do it!

First (and worst) of all, Elise's BG has been all over the stinkin' map since Thursday, which was the day we switched from diluted Humalog to full-strength. It has seriously been a nightmare, I think we were up every hour last night checking her and had to stop a low on two separate occasions.

Then tonight as we were putting her to bed, she started asking for banana and goldfish, something she does only when she's going low. I started to disregard her, chalking it up to wanting to stall the inevitable (the timing just didn't make sense for her to be low), but my Mommy-instinct kicked in and I checked her anyway. She was at 66.

It was weird for a bunch of reasons, #1: at that hour (9:30), she should have had no active insulin. She received her dinnertime H at 5:10 (with a BG of 334). Reason #2: she had a 15g snack at about 7:50 (BG was 169), that amount of carbs at that time usually shoots her into the low 200s by 11:00. Reason #3: she received her bedtime shot of N (a decreased dose by .5 units) at 8:30 and 1 hour is way, way too early for the N to be doing anything to her BG. We usually see it affect her BG by hour 4.

The only thing that was out of the ordinary was that as she was nursing before bedtime, she started to cough so hard that she threw up (milk only). It was about 30 minutes later that she started asking for food. I don't think it was enough to cause her to go that low.

I know Humalog is supposed to peak around the 2-hour mark and be pretty much gone by hour 4. But could the full-strength be affecting her differently because her body is used to diluted? She used to get 10 units of DH at dinner, and now we give her 2 units (although tonight was 2.5 because she was so high). Or is it just a coincidence that we've started having all these issues when we moved from diluted to full-strength?

There are also a bunch of other variables going on; Fred's family is in town and she's so busy having fun playing with her cousin, all this visiting has led to late bedtimes and a somewhat disrupted schedule.

I just feel so overwhelmed right now. I'm not sleeping. I'm barely eating. My house should be declared a disaster-zone. I have no food in the house since I haven't had a chance to go grocery shopping since we got home. I'm too tired to try and make any sense of Elise's numbers and how to fix our insulin problem. My to-do list is about 3 miles long and I can't get my act together to take care of any of it. Our Christmas tree is up, but has no decorations or lights on it and I have yet to take all the Christmas stuff out of storage. And let's not even get started on the Christmas shopping. I might just start to cry if I think too hard about it all.

Instead I will just emotionally vomit all over you guys while I try to figure out a way to clone myself.

I've got a case of the Mondays

Blah.

Ugh.

Can I just go back to bed and sleep throught the rest of this day?

We are still having night time issues with Elise being in the mid to upper 300s, even at wake up. So last night when her BG was 154 before her bedtime snack (154 is high for her at that time of night, she's usually between 90-110), we decided to try to give her a bit of diluted Humalog to keep her from going so high around 11:00.

By a bit, I mean 1 unit of DH. Her ratio is usually 1:3 in the morning and 1:4 at dinner. So I thought 1 unit wouldn't touch her.

WRONG.

At 11:30 she was 78, and the N most likely wasn't even starting to peak yet. Ugh. We gave her 6g, and she was up to 109 by midnight. An hour later, 151. Okay, good.

Except she woke up low (don't remember the number, but it was below 80) at 6:00 am, had 6g more, went back to sleep and woke up at 7:45 at 125.

Not to mention I sat up all night obsessing over what went wrong. I just couldn't let it go. I kept thinking of different things we could try to help get this problem worked out; less DH, same snack, less N. Same amount of DH, less N, more snack. Less snack, no DH, same amount of N. The combinations are endless! Okay, maybe not, but you get the idea.

Today Elise's numbers have been on the lower side of normal so maybe last night she just got done with her growth spurt. I think we'll just go back to our original plan tonight... same ol' N, same ol' snack and let's see what happens.

We're also going camping (rather cabin-ing) with three other couples this weekend and my brain is spinning trying to remember everything we have to bring. I am a total over-packer, but I have to figure out how to fit enough stuff for two adults, a toddler with diabetes who still sleeps in a crib, and stuff for our dog (not to mention the dog) in our SUV. It's going to be tight.

Time to stop feeling blah and get to work on my many lists for this weekend.