Sunday, July 26, 2009

I wish...

I was smarter than this disease. I wish I could somehow know what it was doing. I wish this disease was like math and had an answer. If this, then that.

But it doesn't.

I feel like I'm at war; at war with an enemy far more intelligent, far more advanced than me. Nothing about this arrogant enemy is predictable. Nothing about it is fair or humane. There is no Geneva Convention with this disease.

After a week of amazingly good numbers and no spikes or dips even at karate camp, Sain is high. Not an "oh, she's running a bit high." No, she's HIGH and I can't get her to stay down. We've done set changes, insulin changes, everything -- 20 + units of correction alone yesterday with precious little results.

Maybe it was a mistake letting her go to a birthday party after getting sick at class; maybe I shouldn't have tried to be somewhat social while mapping out strategies of our next move in my head. But I couldn't let it win -- not yesterday. Yesterday we had to pretend to be normal.

My wish for today -- no ketones and that somehow the correction I gave Sain at 4 am is working and that when I go in the living room to check (camp outs in the living room are one of our "sick day" traditions) there are double down arrows from the sensor!

Tuesday, July 21, 2009

The somewhat evil, somewhat wonderful backyard

I have a love/hate relationship with our backyard. I love it's size (about 1/4 acre) for the kids to play in, I love that it is fenced, and I really love sitting back there looking at the stars (there are no street lights around.) But that is where the love ends.

I truly hate mowing this yard. It is huge, bumpy and slightly sloping. On the best day it is not a fun yard to mow and today was far from the best day.

My mower has been in the shop for the last month or so. During that time I kept the front yard mowed using my dad's electric mower but the backyard was neglected. The grass (truthfully, it's mostly weeds) was halfway up my thighs but I was determined to get it mowed today.
Four hours, three complete mowing jobs (on three different settings) and a very full yard waste bin later I am happy to say it's done!

The best part about the yard being mowed -- seeing the kids play out back again!
(The worst part is knowing it will need mowing again in a week!)

Monday, July 20, 2009

The not-so-happy Monday night post

I tried.

I tried and tried and then tried some more to write a positive blog post but I can't do it. It's not that things are horrible; I know they could be worse. It's not that good things haven't happened; I could easily blog about the kids' trip to Oregon, the JDRF banquet or karate camp this week.

That's not it. I am just tired.

I am tired of things being hard. I am tired of people being stupid. And I am tired of having to fight for every little thing in my life.

I am tired of putting on a happy face when I really want to just be pissed off and yell at the world. I am tired of people telling me things will get better -- really? After 20 + years of hearing that you stop believing it.

I am tired of people who have never really used the US medical system telling me it's fine -- what I wish for all those who think it's fine is a chronically ill child. (Sounds mean, I know, but at least I'm honest.) I'll give you a year fighting for your child's life and future then lets see how you feel.

But what I am most tired of is nothing going right. Let me clarify, things have gone right but every thing has been a battle. The big things, the small things and everything in between has involved so much work. Can't something just be easy?

Wednesday, July 8, 2009

Growing Up

For the last 4+ years Sain has been happy wearing her medical bracelet. I owe so much of this to N-Style ID.

When Sain was first diagnosed I searched and searched and searched for a medical bracelet that would fit Sain's style. (Sain has been choosing her own style since well before her first birthday. If you don't believe me, just ask anyone who tried to dress her as a baby -- Sain's got definite opinions and is heavily influenced by one of her favorite TV shows, Fashion Files.) The day I discovered N-Style ID was a very happy day in our household.

Sain wore the Jelly Bands for 4 years. She had everything from the solids to the stars to the polka dots. They are great because of the low price and the variety. But Sain is growing up and ready for a change.

Enter the medical heart charms. It took two charms to put all the info we needed. (Having a long last name and two chronic diseases takes up a lot of letter!)

Thank you, N-Style ID for allowing my daughter's medical jewelry to grow up with her!

Monday, July 6, 2009

Interviews, diabetes and the week ahead

So, this morning I had a phone interview for an HRIS position that sounds really interesting. I was worried about doing a phone interview with both kids home. I could picture Aidan playing loudly with his Lego pirates, Sain's alarms going off or having a low, Tennyson meowing or getting the "kitty cat crazies" that he so often gets but none of this happened.

The phone interview went quite well and both kids (and the cat) were incredibly well behaved. Sain and Aidan played quietly in their rooms and Tennyson slept. Their impressive behavor earned the kids blizzards from DQ. (Tennyson will get treats when he wakes up.)

I think the interview went well. The recruiter was impressed with my background and knowledge so I am hoping for some positive results. But this lay off has really messed with my confidence. I've never really been a cocky person but in the past I've been able to believe in my skills and project at least some confidence. It's been really hard to do that of late.

On the diabetes front:
Sain's numbers have been running a bit high all summer. I just adjusted her evening basal rates and things seem to be going better. Her next endo appointment isn't until September but I am happy it's the big appointment and that they will be doing full labs. The crazy numbers seem to be indicating a spike in hormones -- oh the fun times ahead!! It's times like these that I really love Sain's CGM!

(A few people have expressed concern about my lack of health insurance and Sain's diabetes care. Luckily, Sain and Aidan are both covered through their dad's insurance. As much as I really wish I had my own health insurance right now -- there's nothing quite like the fear of illness when you are uninsured -- I would rather the kids have coverage than me. Besides, the coverage they have now is Aetna and Aetna is paying at least some of Sain's CGM!)

This week:

Today both kids have appointments with our wonderful family doctor, Dr. Molina. Both kids are getting asthma check ups and I am hoping there is something that will help both of them. Scariest moment from the last few weeks -- both kids were having pretty bad asthma attacks at the same time when Sain wheezed, "I feel low." Fun!

The rest of the week is filled with karate and (hopefully) interviews.

Saturday is packed. We have karate all morning, demo practice after that, Sain's best friend's birthday party at the karate school, then we've been invited to watch the fights (UFC) at some folks from the karate school's house. (Thank God Georges St. Pierre is fighting -- he's the only UFC fighter I know!)

Sunday Sain (and the rest of the ACMMA demo team) will be performing on the main stage at Kent Cornucopia Days at noon and both kids will be marching in the parade afterwards.

It should be a fun week. This summer is going way too quickly!