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.)

Six random things I learned this week

SIX – It might take over an hour to get from Redmond to Renton (18 miles) on Tuesday and Thursday evenings but it only takes 25 minutes to get from Renton to the Auburn (16 miles.) I was certain we were going to be late for Sáin’s 5:30 karate class when I didn’t get home to pick up Sáin and Aidan until after 4:45. We arrived at the karat school 20 minutes early!

FIVE – Smog is way worse than heat. I am one of the odd people in Seattle that likes hot weather. Normally when the temperatures are in the 90s I am feeling great. Thanks to the lovely smog – I feel awful. I can’t even get out to enjoy the nice weather and I haven’t used my inhaler so much in years!!

FOUR – Heartfelt prayers said by a five year old are the most pure, innocent, heart breaking things to listen to. I hadn’t realized how deeply Aidan was feeling the pain of Gloria’s condition until this week. When he met Gloria in June, Aidan thought she was one of the coolest people he’d ever met and all his memories of playing with her are in the exact room he will start kindergarten in on the 2^nd. I can’t believe I’ve held it together so well for Sáin and Aidan throughout this tragedy but I almost lost it when Aidan said to me, “What’s most scary is that could be Sáin in the hospital and it could be Lillia remembering me in her prayers.” (Lillia is Gloria’s little sister and Aidan has made a special point to pray for her since he knows what it’s like to have a big sister with diabetes.)

THREE – There is no such thing as the “Lawn Mowing Fairy”. No matter how hard I wish for it, no magic fairy will come and mow my lawn while I sleep.

TWO – Strangers can be very kind. As I’ve stated in previous posts, we’ve been lighting candles for Gloria online and it touching the kind words that are showing up from all around the world.

ONE – Having the “big guns” in your corner feels pretty nice. This summer I’ve been talking to some of the producers at Good Morning America as they are doing a story about insurance companies denying CGMs. I really didn’t think they would choose our story but it’s looking more and more like they might be coming out to Seattle next week. Funny thing is, I sent in my request for a level II appeals hearing with Premera and I am honestly more nervous about talking to Premera than I am about talking to GMA. GMA gets that this is an important technology that can greatly improve Sáin’s life – Premera seems blind to that.

Need a miracle

Please pray for Gloria.

I just got an update that Gloria is no longer in a coma as they thought. She has suffered a severe neurological injury and her likelihood for recovery is small. She might improve slightly but the doctors don't know how much better she will get. (What put this one in perspective for me is that because of the state she is in, Gloria is not eligible for rehabilitation at Children's.)

Please pray for a miracle -- Gloria deserves one!

Random Tuesday Stuff

Our CGM fight continues. Hopefully I will have some exciting news on that front soon. It’s a tough battle because the insurance companies don’t want to cover this technology even though it would save them money in the long run. It’s a bit discouraging but I will continue to fight it.

Gloria continues to be in a coma. There seems to be more talk of long term care and less of a full recover which is hard to hear. We still pray for a miracle and every night Sáin and Aidan light a candle for Gloria.

Sáin seems to understand now that this is a very rare complication and that the reason I test her so much and fight so hard for things like a CGM is to prevent these complications. That said there have been a number of nights in the last week spend comforting and reassuring Sáin. Night time seems to be toughest.

School!! I can’t believe it’s back to school time. Aidan is so excited about kindergarten. We have his orientation on the 27^th and are trying to schedule the pre-first day of school medical meeting with Sáin’s teacher for that same day.

School supplies are all bought, uniforms are clean, and all I have left to do is emergency kits. (Emergency kits are a bit trickier with a diabetic kid.)

Sáin’s new love – Karate! Sáin and Aidan are taking karate this summer. Sáin loves it! (Aidan likes it, too, but love is almost an understatement when describing how Sáin feels about it.)

I was able to get the kids enrolled in the karate school (we had been doing in through the parks department) and budgeted in an unlimited membership for Sáin. Now Sáin will be taking classes 3+ times a week. She takes her first Tuesday class tonight and is very excited.

Aidan will continue with once a week classes for now. I don’t want to overwhelm his schedule. He already knows the house rules that academics comes first so I want to get him used to kindergarten before introducing other weekday activities. I am amazed how academic kindergarten has become – no more play time like I had!

My Little Girl

It's been a trying day for my little girl.

Sain had her endo appointment which went well. Her A1C was a little higher, a few adjustments need to be made to her morning bolus rate and it looks like we're going to have to do a few fasts to re-adjust her basal rates. All in all it was a fine appointment.

The appointment isn't what got to Sain. We found out today that Gloria had a stroke caused by diabetic ketoacidos and this is what caused her coma. (up until now we haven't known the actual cause) Although there are some positive signs -- a moving toe and a little leg movement -- the reality of a diabetes induced stroke at age 11 is hard for anyone, let alone an almost 9 year old with the same disease, to comprehend.

Sain was quiet the whole drive home from Children's. She wanted a much smaller than normal dinner. (actually she didn't even want dinner but agreed to eat a little) She is scared and I don't know what else to do. I've reassured her, her doctors have reassured her, her grandparents have reassured her, heck, even her little brother has reassured her but Gloria's condition hits too close to home.

So I listen. I listen to the fears of my little girl and want to burst into tears. But I listen and I comfort and I keep her talking about her feelings. I listen to the valid fears; I listen to the irrational ones. Then I listen to this, "Mommy, please don't let that happen to me." I kissed her head and promised I would protect her.





Within minutes Sain was asleep. She's exhausted both physically and emotionally.

I pray to God I can always keep my promise.

Community

This disease is full of lessons. Some of these lessons discourage me; others give me strength.

If someone were to ask me what I’ve learned since Sáin’s diagnosis I could easily ramble on about the medical, the research or the legal lessons I’ve learned as a result of diabetes. But those aren’t the biggest.

I’ve learned that paying attention to School House Rock as a child helps when, as an adult, you discuss with a senator how a bill becomes a law. (more on that in future postings – if you don’t like the laws then change them, right?)

I’ve learned that knowing ABC News and Good Morning America care about your CGM battle is an amazing feeling. (more on this, too, in future postings)

But here is what diabetes has really taught me – the definition of community.

When Sáin was diagnosed we became a part of the Children’s community. They rallied around us and are still there for us every day.

2 days after diagnosis we became a part of the JDRF community. They gave us so much information, support and hope. I will never forget Chrissy looking me square in the eyes and telling me, “It really will be okay. Trust me.”

4 months after diagnosis we became a part of the St. Anthony School community. I am currently witnessing the power of this community. Watching this community come together to support Gloria and her family is awe inspiring. In less than 18 hours nearly 50 virtual candles have been lit. I’ve heard a number of times that one candle only shines a small light but a group of candles can light the world.

As an outsider most of my life, I used to view community as a necessary evil but I’m slowly learning that it’s the darkness and “evils” in life that make community even more important.

Smartest cat in the world

Every time I clean out Tennyson's litter box he comes over and watches. (It's almost as if he doesn't trust me to do a good job if he's not there.)

This morning I started scooping. Within seconds I had a fury black supervisor.

Before I continue there are a couple of things you should know about Tennyson.
1. Paper is he absolute favorite toy
2. Tennyson doesn't seem to realize he's no longer a kitten

Okay, back to the story. Tennyson noticed a paper lying near the litter box and started attacking. Before I could stop him (he's unusually quick for a 13 year old cat) the paper was in the (still dirty) litter box being ripped to shreds.

Needless to say the paper was a disgusting mess. While taking the paper bits out of the litter box I noticed it was the shredded remains of the Premera envelope that our second denial came in.

Tennyson was a little shocked when I gave him treats and praised his actions.

If a cat can understand that these denials belong in the litter box, why can't the insurance companies get it?

(Happy 14th Birthday tomorrow Tennyson!!)

overwhelmed

That is how I feel today.

But today, like all days, has things that need to be done so I push that nagging sick feeling to the background and I go about my day.

I will have a smile on my face even though what I really want to do is cry and I will be one of the most productive employees in my company even though I want nothing more than to sleep.

I will not snap at the people who don’t do their jobs whose task I will end up doing and I won’t think twice about helping out another department even though I am in the midst of a DOL audit.

Before you get on my case about this self-pity, please note that the last 19 years (yes, 19 years) of my life have been an uphill battle and a fight that would’ve broken most people. I will continue to fight but I am seriously tired of it. When do I get a break?

I sometimes think if I was a recovering drug addict or rehabilitated criminal then society would cut me a break but because I’ve tried to do the right thing most of my life and I’ve tried to take responsibility for my actions then I don’t get a break.

I know, tomorrow is a new day but when does it get better?

(Because I am, at my core, an optimist and self-pity last less time than it took me to write this post, I have to include this. (You can also read about it here.) For all who’ve contributed to JDRF, this is one of the things your money has funded. THANK YOU!)