Friday, November 30, 2007

More Todd stuff

So I called clinic this AM and the plan is for me to come in on Monday for the full work-up--PFTs, CXR, labs, etc. We will look at the data (since Todd is an ultimate "numbers guy") and see what's happening. Potential for bronch is there, with, of course, crappy timing, because Monday is the Parish Council potluck, the Advent evening of reflection, and then the Parish Council meeting proper, at which I am presenting constitutional amendments. Oh well.

Day 2 of the levoquin....not a whole lot of change thus far. Current sats (as in, about 30 seconds old) are 98, which is better than yesterday, but anything about 95% is considered OK. So we'll see...

SOHC: clarification on SCHIP

OK, yeah this is sort of old and the battle is over (for now), but here is some clarification:

the War in Iraq, like all wars, will one day end. Therefore, expenditures for the war will end.

SCHIP is an entitlement. And, as we know, entitlements never end. Therefore, we will be paying for SCHIP long, long after the Iraq war is over.

Thank you.

Thursday, November 29, 2007

Book Club reminder!

The Nutmeg online book club is meeting again in January, and I'm hosting--right here!
The book is:

In This House of Brede

Come join us! January 21!

Todd stuff

Eh an interesting visit.
PFTs down a bit--from 59 to like 56 or so. Or 55. I forget. NiOx the same. The DLCO (also known as the "hold your breath for 10 seconds" test) was actually up. Sats at 97%, which for me is lower than normal.

So we had the battle of the numbers--there's something on the lower right lobe in my X-ray, but that's not where the new chest pain is. The chest pain is in the upper left lobe (started last night during choir) and the left side. So I'm all confused. AS is Todd, I think. I am supposed to call tomorrow first thing and let them know what's going on, and then we may bronch, we may not. If no bronch I come in Monday morning to see how the newly-started levoquin is doing. (I took my first dose tonight)

Oh the joy of the pre-winter season and transplants...

Wednesday, November 28, 2007

Book club date!

Monday, January 21--In This House of Brede.
Read it.
Be here!! :)
Link in the side bar.

Visiting w/ Todd

Time with Todd tomorrow--I'll let you know how it goes!
The normal stuff is on tap--blood, CXR, PFTs, NIOX, etc. I will also be meeting the dietician and probably Megan, our new transplant nurse/coordinator. Woohoo!

Tuesday, November 27, 2007


Those of you that pray, send some up for me...
Go here for more...

God must be crazy....

I just left a message at a convent regarding a vocations retreat.
Either God is nuts, or I'm nuts, or a combination of both.

Thursday, November 22, 2007

Happy Thanksgiving!

caption: Courtney puts her head on the block for Paige's amusement, Turkey Day '05
I hope you all have a wonderful and blessed Thanksgiving!
I am about to hit the road to go to Pittsburgh to eat with the Clan--will be back on Saturday! And, my tree is up, so pics to come. :)
(Oh, and finished both blankets. Go me!)

Tuesday, November 20, 2007

The Craftiness of Christmas

My cousin Julie is having twin girls in the spring, so in their honor I have decided to make them fleece blankets for Christmas. Well, or their birthdays. Whatever. :) Anyway, Julie will get them for Christmas.
And yes, the Grinch and Max are on the left. :)

Saturday, November 17, 2007

It's the time...

For this

CI update

I went to see Beth the audiologist on Thursday and we played with the CI a little bit (I need to name that buddy). We tightened the magnet--every time I went to move my hair with my hand, or use the phone, the CI would fall off--adjusted the settings of the MAP (sound thresholds) and also upped the sound frequency from 900 mHz to 1200 mHz, meaning sound comes faster and is processed faster. This makes the sound a bit crisper, and I'm liking it so far. I don't have to go back until May, unless I have problems, and May is the 1 year mark for the installation of the CI, so I'm happy about that. :)

Thursday, November 15, 2007

Go me!

I would just like to say I have done Yoga every day since last Friday. I have also done actual cardio exercise.
These are big accomplishments. I'm happy. :) :)


The Nutmeg online book club is meeting again in January, and I'm hosting--right here!
The book is:

In This House of Brede

Come join us! Date TBD.

Tuesday, November 13, 2007

Responsibility much?

This story from USA Today got me thinking.
I'm diabetic, as we know, a development post-transplant due to lovely transplant drugs. Woohoo!No, it is not the Biggest Thrill in my life to poke myself with needles, but it doesn't hurt, it's not The End of the World, and I can Deal With It.
But then you've got people like the ones in this article, and I start thinking, 'how about a little personal responsibility, here?'
If you're a kid (or an adult) and you've got Type 1 diabetes, there's not a whole lot you can do to prevent it. It just happens. Type II, while it may just "happen", also is dependent on lifestyle factors. And I will admit, that before tx, I was not really into exercise. I knew it was beneficial. I knew it would help my PFTs, etc. But I had such a hard time keeping on weight that the idea of exercising, which would cause me to lose weight (since I never really had an appetite, ever), didn't make sense to me. So I fought it. Yes, bad patient Emily.
But when the mom says:
Zarate encourages Richard to take care of himself, but "trying to get him to eat vegetables takes an act of God and Congress."

Nor is he much for sports. "He's a video-game nut. I say, 'You want to sign up for basketball?' He'll say no." Her sister tries to get him to walk around the apartment building, "and he complains the whole time."

I want to scream, DON'T BUY THEM! You are the parent! You have the control of the money here! If the kid can't play them, then he has no choice but to walk or go outside or whatever. I guess he could just lump around and whine, but that would get old, real fast, wouldn't it? And as for food--don't buy junk! If you only buy healthy stuff, he'll HAVE TO EAT IT, or go hungry, and no kid will go hungry. Come on!

Whatever happened to taking responsibility for our health choices? Huh?

Monday, November 12, 2007


Yesterday's game sure was a squeaker! But we prevailed. :)

Got the day off, so:
--Christmas shopping
--music practice
--prep for Parish Council meeting
--lunch w/ the Bubby
--L&A--go here

Thursday, November 08, 2007

Steelers-Browns rivalry is back - Sports

Steelers-Browns rivalry is back - Sports

The Little Bro wrote this--so read it and enjoy!
Dream Mom: The Birthdays

Te above post from Dream Mom, about celebrating her son's birthdays, sort of got me thinking. Let me share. :)

She talks about the gratitude you feel when your chronically ill/disabled kid celebrates a birthday, because you got one more year with them. But you also mourn the loss of things that won't happen, and look back on the good things that have occurred. Her son just turned 16, and he's not learning to drive; he's finally sitting in the front seat of the car, because that's where it's easiest to place him.

So I started thinking about my life and the things I've accomplished that most people take for granted, but, at some point, we're supposed to happen, or were in question. Or just normal things that, when you've got a terminal disease, may or may not happen:

1) I got my driver's license
2) I got my first kiss
3) I was engaged to be married, so I've been in love (twice....I think. The in love part, not the engaged part)
4) I graduated from high school
5) I graduated from college--on time! (double major, thank you very much)
6) I have my own apartment
7) I have a real job (with insurance!)
8) I went to prom (sans date, both times, but oh well)
9) I've traveled without my parents :)
10) I'm still here (that counts, right? ha)
11) I can function independent of my parents
12) I can communicate--my mind wasn't affected my CF or any of the other crazy things I've had, and when you read about some kids and their illnesses, believe me, this is a big point.
13) I made fantastic friends
14) I can climb a flight of stairs, yo!

Course those are just off the top of my head. And, of course, there are things I will probably never do--collect Social Security (well, OK, no one in my generation might), join AARP,get married, have kids (my own, biological children). Now, of course, I still want to get married. I haven't become that jaded. And I love children. I would love to have my own. But part of having health issues your entire life is becoming reconcilled to the things that you won't get, or can't have, etc.

Does that make it better? No. But you do have to make peace with it, and be happy for what you can do, and what you have.

This post also reminded me of why I don't understand people who hate celebrating birthdays. You're alive! You're still here! I think we should celebrate that! So many people don't want to get older. I want to hit 30. I want to have an actual mid life crisis at, um, midlife. I want to watch my brother and sister get married and have babies (well, Mel have them, anyway...Bubby's wife'll do it for him. Ha). Every birthday is a big party; every day should be a big party! We're still here! We have another chance to enjoy the great things life has given us, whether it's a coffee break with our officemates or dinner with our friends or a funny movie. Or even finding a good parking space.

So, in the words of Pollyanna's minister, let's "take a little time to enjoy the sunshine. And...think about who's sending it down to you."

Sunday, November 04, 2007

Big Stone Gap pasta

Based on a recipe found in Home to Big Stone Gap

I lb. medium shells
1 lb. frozen or fresh sweet peas
4 oz pancetta or sliced ham
1 pt. heavy cream
butter (about 2 tbsp)
3 garlic cloves

Heat pasta in salted water until al dente. While the pasta cooks, place butter in a deep skillet to melt. Add crushed, minced garlic, pancetta and cream. Keep on low heat. Add the peas to the pasta just before the pasta is done. Drain pasta mixture. Add to the sauce in skillet--toss. Plate and top with grated parmeasan cheese.

NOTE: if you like a thicker sauce, add more cream and butter. :)

Yeah I'm here....

Sorry I've been AWOL lately...a lot going on. I've been working on the novel so go here to see what's going on in that department.

Dr. A visit on M--all is well. Numbers are all good, so I don't have to go back until after Thanksgiving, huzzah! I also saw Dr. Hardin, my endocrinologist, and we're messing with my insulin doses a bit, so that's a work in progress. Always is. Oh well. The diet thing can be hard to follow--healthy things, like fruit, or the 100% juice stuff I like, are often high in carbs. But then unhealthy stuff is not. So what am I supposed to do here? No idea.

Been doing a lot of reading, including the "Big Stone Gap" book series, which are phenomenal (Catholic Italian woman living in the mountains of Virginia, with musicals! And Italian recipes!). There are four books in the series, and they are all worth reading. I am trying the pasta recipe from "Return to Big Stone Gap" for lunch today, and if it's good I'll post it. Mmmm. Pasta. (And since it's about 50 degrees here, a nice pasta sounds really good.)
I also bought Edith Wharton's "Summer" so I'll start that today, too, before the Pats/Colts game (which, really, is ideal for me, as a Steelers fan, because one of these teams has to lose. A great situation.)