Honest Friday Post

aka The Post Almost Not Published

Maybe it’s the depressing choice of songs my iPod is shuffling for me today, or maybe it’s the end of summer but what ever it is I am very reflective today.

Truthfully, I think my mood stems from seeing in writing the fact that it was just a few months post-diagnosis that I was presented with the lovely challenge of single parenting. (We were interviewed at JDRF for PR stuff.)

I don’t blog about that aspect of my life, I try to keep it separate, but I am going to cross that line a little today.

Financially it’s tough. I wish I had the money to do everything I want (and everything my kids deserve) but on one income it’s tough to keep up with medical costs and private school tuition. Both of which are too important not to pay for. Thank God my kids have good imaginations and we can make our own adventures instead of having to go places.

Physically it’s tough. I know the lack of sleep and constantly pushing myself to do more is not healthy but it’s what I have to do. There are days when I lie in bed after my alarm goes off and seriously wonder if I am going to be able to get up. But I do it and I will continue to.

Socially it’s tough. I get one night a month without the kids and most of that is spent worrying that their dad won’t check blood sugars or will let alarms on the pump go off without fixing them (sadly, this happened.)

Emotionally it’s most tough. I have a great network of friends and family around me but no one is there in the middle of the night. I would love to be able to come back to bed after a 2 am check and tell someone (besides Tennyson) how the numbers were. No one in my network of people really knows what it feels like to be alone and do this.

That said, I wouldn’t change a thing. I have the best kids, the best family and friends, and the best cat (who really does seem interested when I tell him Sáin’s nighttime numbers.)

Have a wonderful Labor (or Labour if your in Canada) Day Weekend!

(I TOOK MY iPOD OFF SHUFFLE BECAUSE IT SERIOUSLY WAS PLAYING ONLY DEPRESSING SONGS!)

Work - my home away from home (sadly)

A coworker told me today that you can tell everything you need to know about a person by the items on their desk.

What does mine says about me?

Left to right:

• Pictures from Sáin’s first day of kindergarten and from the 1^st grade Christmas concert.
• Referral cards to my wonderful dentist.
• A stand made out of benefits cards that had been propping up Marvin the Martian.(Marvin is now living safely on Deb’s cube wall.)
• A leaf (there are actually three leaves on this shelf.)
• Super Deflectos – The superhero cows Julie and I came up with to deflect negativity at work.
• My Maple Leafs Easter egg standing on a turtle from Willows Road
• A lucky leprechaun (on the wall next to the Super Deflectos)
• Devil ducks walking across a wrench (also found on Willows Road) to another turtle. (notice the baby duck is the leader since youngest children make the best leaders!)
• A garden gnome
• A lucky clover from Ireland.

(This stuff is actually from a shelf above my desk. Since I work with confidential information I can’t take a picture of my actual desk. Plus my desk is very, very messy right now and no one needs to see that!)

Life is full of disappointments

Message to those who say my diabetic child doesn't need a CGM:

Your day ends when you go home. You don't have to think about this disease 24/7. How nice it must be for you to not worry your child might have a seizure or die in the middle of the night. How nice it must be for your child not to worry about these things.

The reason Sain doesn't have seizures is two-fold
1. I check her MANY MANY MANY times a night -- last night it was at 9, 11, 1, 4 and 6 am. Were you up at those times, too?
2. I run her numbers higher at night so I can get A LITTLE sleep.
(Hmmm, maybe that's why her A1C is a little higher -- did you think of that?)

To say she does not need one after telling me she's a great candidate for one and that it would greatly improve her stability and prevent long term complications is absurd.

I have never been as angry, sad, disappointed as I am right now.

(Interestingly enough, this post is NOT directed at the insurance companies. No, this wound cuts much deeper.)

Fall/Autumn – whatever you call it, I love it!

(Before I start – I realize it’s still August and that my love-fest with a season has precious little to do with our life with diabetes but it’s either this or a rant about the whole CGM thing so I think this is a preferable choice.)

I love fall. I think it truly is my favorite season.

I love the changing leaves, the cool air, and the start of school.

I love the rain, the wind and thunderstorms.

I love weekend football games in an open stadium and trying to cram way too many people under one stadium blanket.

I love that smell in the air that tells you winter is just around the corner and I love all the holidays.

I love that Sáin’s blood sugars are better in the fall and I love that I don’t have to mow as often in the fall.

But what I love most of all about fall is HOCKEY. Oh, my Leafs, you have no idea how much I needed you this summer. I’ve missed you terribly and I can’t wait to see you again!

Another fun night ahead

So, it's 11 pm and I can already tell you it's looking to be another fun night.

6:30 Dinner blood sugar reading -- 338
Correction bolus plus dinner bolus usually takes care of it

8:00 Infusion set change / new insulin reservoir

9:00 Bedtime blood sugar reading -- 340
correction bolus

10:00 Check to make sure blood sugar's going down -- 378
new infusion set and correction bolus

10:35 Check to make sure blood sugar's going down -- 448 (lots of eights tonight)
new infusion set and new reservior and another correction bolus

NO KETONES -- thank God for small miracles

10:48 Check to see if blood sugar's going down -- 440

In 10 minutes I will check again. Why do I get the feeling this is going to be "one of those nights?"

What a day!!

Today has been an odd day.

As most of you know, this summer has been spent battling for a CGM for Sáin. The battle began back in May (before our trip to Toronto) with a letter of medical necessity and has travelled through multiple denials, multiple appeals and communication with Good Morning America. We were set to interview with ABC on Friday but, through a long series of events that I would write about but I am too tired to, it seems Aetna (Sáin’s secondary insurance through her dad) may pay for Sáin’s CGM. At least that's what the two unsolicited phone calls today from Medtronic told me.

Needless to say our ABC interview is postponed until after we receive a denial from Aetna (or, God forbid, an acceptance letter!) The ABC folks were wonderful about everything and seem genuinely happy that Sáin might be getting her CGM -- despite what some people told me, I found media folks to be great. (They are still interested in our story if we get a denial from Aetna, too.)

Sáin took the news very well and was more excited at the prospect of getting a CGM than disappointed with not being on GMA. This proved to me more than anything how much she wants this device.

Honestly, I am having a bit of trouble. I am truly very, very excited with the prospect of coverage but I am disappointed by large number of people that have come out of the woodworks to support us only after ABC got involved.

For three months I got very little support from some people that really should've (in my opinion) been helping and now everyone and their brother wants to help me. (It got so bad today that I actually turned off my cell phone and, if you know me at all, you know I am one of those annoying people who always has my cell with me.)

Where were they when I asked for help? The only place I found real support was here, online. Out there in the "real world" I felt alone. Why am I suddenly important enough to help?

At the end of the day all that matters is Sáin getting her CGM but I don't know if I will ever view things the same way again. This disease can be very disillusioning.

(The picture is what I see when sitting at the computer -- (left to right) iPod box, glasses that my dad uses when he plays games on my computer in the mornings when I leave for work entirely too early and he's kind enough to come over, a Diet Mountain Dew (if diabetic parenting were an extreme sport, I would be a shoo-in for an endorsement deal) and the "quick setter" for Sáin’s pump infusion sets with my reflection in the background. I look tired.)

Attention AMEX card holders

This is the last day to vote on the members project that will receive 2.5 million dollars in funding from American Express. If you have an AMEX and have not voted yet, please consider voting for this one. (I’m sure the other projects are very worthy but I happen to be very fond of the idea of curing this disease.)

No update on Gloria. It’s such a tough and tragic situation but we’re still praying for a miracle.

We brought some get well cards for people to sign at the ASAPP (Active St. Anthony Parish Parents) picnic on Sunday and it was really hard to talk to other parents about the situation. I’ve come to realize that you can’t truly understand any situation until you’ve lived through it.

As Sáin pointed out to me on the way home, it was nice there was another diabetic family at the picnic – their fears are the same as mine, the look in their eyes when they’re watching their son test and bolus is same as the look in my eyes when Sáin is doing the same. I would never wish this disease on anyone but I must say it’s comforting knowing that at least a few other people truly know how you feel.

No updates on CGM either. I did find it a bit funny that I got my Premera health assessment back today and I am considered very healthy with one glaring exception – I don’t get enough sleep. Really? You mean it’s not healthy to wake up 2 – 3 times a night to test your child’s blood sugar? I never would’ve guessed!! (Sorry for the sarcasm. I guess that's another side effect of not getting enough sleep.)