Update time

Tomorrow will be the "one week" mark, and things are, in general, going OK. Sleeping is still a very off and on proposition, which irritates me, because we know how much I love my sleep. :) It also doesn't help that's it's been pretty humid here, with a lot of thunderstorms, which I generally like, but they don't seem to like my head. (Or my head doesn't like them. One of the two.) But in the grand scheme of life, things aren't too bad.
Still reading like a fiend...read Elizabeth Berg's Until the Right Thing Comes Along last night, which was pretty good. Not my favorite of hers, but it's OK. It was a quick read, which is what I wanted, to take away from the War and Peace and B XVI book madness!
Also watched The Painted Veil...check out the 11th Commandment for more on that. :) (Yes, a shameless plug. Hah!)

GRRR

Back to not sleeping! Since sleep isn't happening I might as well blog...or at least update the side bar (which I have done).
On the plus side, I love these low-cal fudge bars that I eat whenever I can't sleep. It seems like hunger or my head, or both, are conspiring to keep me awake. Sigh.

I knew it!

Elizabeth Bennet

Often called Lizzy, Elizabeth is the heroine of Pride and Prejudice. The seceond eldest of five sisters, she is witty and intelligence, though her prejudice prevents her from recognizing her true love when he appears. However, Mr. Darcy, though he appears proud, wins her love and respect, but not before she believes she's lost him forever.

Which Classic Heroine are You?

Voodoo time

No, not really, don't panic.
One of the things I forgot to mention about the surgery was that Dr. W used tiny needles to indicate the placement of my facial nerves, so he wouldn't get too close and nick them during surgery (or, heaven forbid, do worse). I was like a little voodoo doll--I noticed I have a very very tiny mark on my forehead from where one must have been.
Sleeping is still sort of a weird thing; I sleep in spurts and then want to get up at like 5 a.m. This is very weird for me (but I don't have to tell you that). The sutures seem to be doing OK. Overall it feels like someone put a dollar coin in my head right b ehind my left earlobe. It's weird to tuck hair behind it. But I am lucky that I have hair to cover it. The shaved area isn't all that big but I can deal with the purple-ish bruise a little better.

Funny :)

A quote from Disney that seems applicable right now:

"No! Don't pull on her head! She's recovering from surgery!"--Lilo, Lilo and Stitch



Lilo and the aforementioned doll. Oh, and Dr. W did a better job than Lilo did on the closing. :)

Dressing's gone!

So I look slightly more normal! The area behind my left ear is bruised pretty good (sort of an eggplant color, from what I can see), and I'm not totally sure what the scar looks like because I can't turn my head quite that far. But I washed my hair (w/ mom's help) and we put neosporin on it to keep it clean, so it doesn't look too bad. I'm glad I'm not a boy, though, because at least my hair covers the spot. I love my hair right now. :)
Overall am feeling really good, surprisingly. Hopefully the trend continues...

Pictures...

Haven't had a few in awhile, so here for your viewing pleasure:

I'm baaaack!

And we're back!
So to wrap up:

Well, the surgery time kept getting pushed back. First it was 9:30 then it was 11 something and then, finally, we settled on 1:30 (which was more like 2, but oh well). So Dad came over to my apt. around 11, and we cleaned out the trash, did some final packing, etc. before we headed over to Riverside.
The campus is nice, and it wasn't too hard to find a place to park, since everything is color-coded (yellow, red, green, purple, blue, etc). I was in the "yellow" section but we parked in Green, which meant a short jaunt through the hospital to the surgery waiting area, where we arrive promptly at noon like we were supposed to. Boy was it crowded. I don't think I've ever seen one that crowded. Dad said the one at Children's isn't like that, but Mount Carmel (where he goes w/ Mom for her surgeries) is.
The women at the desk were nice (actually, everyone here was nice--good thing) and we registered and waited a few minutes until a woman from surgery came down to get us. The cool thing was this wide-screen monitor that listed all the patients and where they were in the surgical process, from check in and post-op. Very cool. :) I liked that. Dad said they had one at Children's but since I've never waited for anyone to come out of surgery I obviously wouldn't know. :)
We were taken up a floor to the pre-op area, where I got a bed, a gown and huge hospital socks. :) These gowns were somewhat nicer than Children's since the sleeves button, so when nurses wanted to access my port we didn't have to pull down the whole gown and give everyone a great view of my chest. But I guess you can't do button gowns at a kids' hospital because you'd probably have a bunch of naked kids running around as they figured out how to undo the buttons!
I had three nurses, but I mostly saw Ann, who was really nice. We did the usual pre-op questions, and I was very glad we had brought my med bottles in with me because all I had to do was give the bottles to Ann and she could just write them down, along w/ the time I took them each last. It made life so much easier! We also accessed the port and started IV fluids.
Dr. Willett came in right away and talked to me about what to expect, etc., both pre and post-op. They would "check" the implant right away to make sure it was working and in the right place. Now that doesn't mean I can hear now (because I can't, not until I get the outer part of the implant at the end of June) but they were able to check it and I did respond, apparently, so it's in the right place and once we activite it I will be able to hear. This is a complicated thing to explain, no? Sorry. I'm doing my best here. He also said there would be a lot of buzzing (which there is) and stuff like that.
I also had to do the lovely pre-surgery pregnancy test (even though I am never pregnant, oh well). Right before we went back I met the anesthesiologist, who talked me through it and asked me if I had any questions. He was very business-like but good. Knew what he was doing. :)
Around 2 I went back to the OR--the last surgery had run a little long. I got to keep my glasses and my hearing aid until right before we started, which was nice.
The OR itself was medium-sized, which was nice, because those big ones can be kind of scary. Even though I could still see and hear, I got a little freaked out right before we started; there's all these people working on you, and they're so close, that it can freak out the most calm person, I think. I received the oxygen maskl and right after that the Doc slipped some sedation materials in my line, and I was gone. :) Yay!
The susurgery took about five hours, and I finally woke up (well, kind of) in a room hours later. The room was a double but I was the only one in it; Dad spent the night and took the other bed, which was nice for him, since he didn't have to sleep in a chair like he normally did. I threw up a few times, but Dr. W was great about having pain killers and anti-emetics given to me, and the nurses were great about giving them! So overall I was pretty comfy.
Dr. W came in this morning around 7:15 to change the big dressing to a (slightly) smaller gauze dressing; it looks kind of like a big-fat headband. :) Obviously it is thicker on the left side than the right and I can't lay on my left side (not that I would want to, anyway!). About an hour later I got to go home w/ some scripts (a pain killer and an antibiotic) and tomorrow we can take off the big dressing and just put neosporin on the stitches twice a day until I go to see Dr. W next Friday, when he'll remove the stitches. I can even wash my hair, albeit gently, so that's a good thing.
All in all, things going well so far. Happy about that. I'll let you know how things go tomorrow...

Surgery tomorrow!

Well the time's been moved to 1:30, so we have to be at Riverside at noon, which means Dad will be over here around 11 to help me move stuff into the car and clean up the apt. before we leave. At least I'll have time to get stuff done in the AM, but I'm going to be grouchy being NPO that long, which is why I am pigging out now. :) Ha ha. I figure the next two days will be light eating-wise. So enjoy it now....
No blogging tomorrow, possible resume on Thursday. Not sure.

Books! Again!

I love this meme, from Fr. Z and the Hermit. So even though no one's tagged me I'm doing it, darn it!

Three fiction books everyone should read:
1) Jane, Pride and Prejudice
2) Michael Cunningham, The Hours
3) Milton, Paradise Lost

Three non-fiction books everyone should read:
1) Thomas Howard, On Being Catholic (even if you're not Catholic, dag nab bit)
2) David McCullough, John Adams or 1776 (depending on your stamina)
3) JPII, Crossing the Threshold of Hope

Three authors everyone should read:
1) Jane! Jane! Jane!
2) Dostoevsky (at least once)
3) C.S. Lewis

I tag Nutmeg and Liz. If they read this. :)

Countdown: 2 days

Well only two more days until the C.I. surgery...oh the joy! Like I said I'm not so much excited as I just want to get it over with, you know? Being able to hear even slightly better will be a big boost to me and will certainly make everyone around me happy. (Or happier)

We go to Riverside on W morning, the time is TBD. Last time I believe the surgery was set for 9:00 so that meant we had to be there at like 7. Not that I'll mind because I'll get to sleep plenty. I will be staying over night so there won't be any blog activity from Wednesday to Thursday for sure. Potential re-blogging to start on Friday. I will be at home during the recovery so I will have wireless, which may mean more posting once I'm up to it. :)

The surgery can take anywhere for 1 1/2 to 5 hours, although we're only doing one ear (my left) so it shouldn't take five hours. You can do a heart transplant in 5 hours, come on! I have no idea what it's going to really look like, post, so I'm sure that'll be a fun discovery. It's very odd to consider having things done to my head, you know?

I have some new books, of course: Jesus of Nazareth, Reason to Believe, The Grapes of Wrath, The Painted Veil. So I will be entertained, at least. And the Jane Austen project continues apace; I finished the Cambridge Guide and am working on The World of Her Novels, which is fantastic. Loved it.

book update

So here's how the reading from the massive Book Binge is going: (bold means I've read it, a star - highly recommended)

--War and Peace
--C.S. Lewis, On Stories *

--Jennifer Cruise, Fliriting with Pride and Prejudice
--Deirde Le Faye, Jane Austen: The World of her novels
--The Cambridge Introduction to Jane Austen
--The Cambridge Introduction to Virginia Woolf
--Ross, Jane Austen *

--What Jane Austen Ate and Charles Dickens Knew

--Elizabeth Berg, Dream While You're Feeling Blue *

Now reading: Introduction to Jane Austen, Jane Austen: The World of Her Novels
I am also going to re-read Late Have I Loved Thee (*) for a POTENTIAL submission to Dappled Things.

Two in a row!

Yes, another good clinic!
PFTs good, NiOx was broken, so can't tell you what that was about. All the labs are good. So we are set for surgery next week. Oh the joy!
Everyone keeps asking me if I'm 1) nervous and/or 2) excited aboutt he surgery. The honest answer? I just want it done. I want to be able to decipher sound. That would be really, really great. Even though it will never be as good as natural hearing, it's GOT to be better than what it is now, with everyone sounding like Charlie Brown's teacher and me being unable to really use the phone. I will say that I like the fact that no one calls me at home. It's nice for it to be so quiet. :) But I also miss the communication aspect of it. And I'd like to be able to hear everything in session at work, too. And the benefits for my music will go without saying. :)
AND I exercised today! Go me!

Major book binge

The books I just bought:

--War and Peace
--C.S. Lewis, On Stories
--Jennifer Cruise, Fliriting with Pride and Prejudice
--Deirde Le Faye, Jane Austen: The World of her novels
--The Cambridge Introduction to Jane Austen
--The Cambridge Introduction to Virginia Woolf
--Ross, Jane Austen
--What Jane Austen Ate and Charles Dickens Knew
--Elizabeth Berg, Dream While You're Feeling Blue

Wow.
And am still reading Queen Isabella, which is a great read thus far. I have finally made it to part II. Yay!

Well at least I'll have stuff to read in the car when we go to Pittsburgh this weekend!

Major book binge

The books I just bought:

--War and Peace
--C.S. Lewis, On Stories
--Jennifer Cruise, Fliriting with Pride and Prejudice
--Deirde Le Faye, Jane Austen: The World of her novels
--The Cambridge Introduction to Jane Austen
--The Cambridge Introduction to Virginia Woolf
--Ross, Jane Austen
--What Jane Austen Ate and Charles Dickens Knew
--Elizabeth Berg, Dream While You're Feeling Blue

Wow.
And am still reading Queen Isabella, which is a great read thus far. I have finally made it to part II. Yay!

Well at l;east I'll have stuff to read in the car when we go to Pittsburgh this weekend!

For mother's day

Great story from Human Events:

For Mother�s Day - A Mother�s Determination
by Tom Purcell (more by this author)
Posted 05/09/2007 ET
Updated 05/09/2007 ET

It was 1994. She thought she’d heard a faint wheezing in her baby’s lungs. She took her baby to the doctor right away, who sent her to a specialist.

The doctor said it was nothing -- probably a touch of acid reflux. He said it was common for new mothers to overreact. He said he’d run some tests to be safe.

Later that night, she was preparing for bed. The phone rang. It was the doctor. Her daughter tested positive for Cystic Fibrosis.

The doctor warned her not to panic. The tests could be wrong – he’d run them again the following day. He warned her to avoid reading about the illness until it was confirmed.

But she couldn’t wait. She threw a rain coat over her pajamas, grabbed her sleeping baby out of her crib, then rushed out to a late-night book store. As she cradled her baby in her arms, she read everything she could about CF.

It is an hereditary disease that causes a child’s lungs, intestines and pancreas to become clogged with thick mucus. It is fatal. She’d be lucky if her daughter survived into her 20’s.

She broke down in the book store. She slid to the floor, crying uncontrollably as she held her baby tightly. She cried as though her baby had already been taken away.

The doctor confirmed the lab results. The pain was unbearable. She and her husband did not know what to do.

She reached out to a friend. Luckily, her friend knew plenty about CF. She knew former NFL star Boomer Esiason and his wife Cheryl. They have a son with CF. They’ve done extensive fundraising for the Cystic Fibrosis Foundation, and now head their own foundation.

The Esiasons contacted her right away. They understood her pain well and consoled her. They shared everything they knew about the illness.

She was instantly transformed. She began channeling her pain into mastering CF. She learned how to apply medications and treatments to give her daughter the best hope.

She learned of CF’s other challenges, too. Though there are 30,000 Americans who suffer from the illness, the number is too small to spur drug companies to do research. The CF market cannot generate enough revenue to recoup the millions needed to develop new drugs.

So she took the bull by the horns. She quit her job and jumped into the CF fundraising business full time. She joined boards and chairs events. She gives speeches wherever she can.

The money she raises goes to the Cystic Fibrosis Foundation. It hires its own scientists to advance its own medical breakthroughs (90 percent of the funds raised go directly to research). Thanks to so many just like her, the average lifespan of a child born with CF has jumped to 36.5 years.

But that isn’t good enough for her. In 1998, her second daughter was born with CF. There was only a 25 percent chance that she and her husband, both CF carriers, would have another CF child, but fate struck again. They felt unbearable pain again.

Every day is a battle for her now. Every day, her girls must take a collective 34 pills and an array of oral medicines. They must complete 10 breathing treatments and six 30-minute therapy sessions. The treatments and medicines are designed to extend their lives.

Every day, she works tirelessly to raise money to advance any technique or medicine that might extend a CF child’s life a little longer -- that might, if promising new research goes as hoped, cure this dreaded disease.

Hers is the story of a mother’s love -- a mother’s powerful determination to breathe life into thousands of children.

Her name is Angela Kinney and she could use a little help. She’ll be participating in the Great Strides walk in Pittsburgh on May 20th (an event that is held throughout May in cities across America). To contribute to her efforts go to www.cff.org/great_strides/angiekinney or contact her directly at angiekinney@comcast.net.

You might want to wish her a Happy Mother’s Day while you’re at it. She’s certainly earned it.

Ear notes

Something I've noticed...
A lot of people seem to think that since I need a C.I., that I'm deaf and can't hear anything. That's not exactly true. I'm always getting asked "can you hear that?" or "I hope you can hear this" if I'm at a concert.

It's not a question of "hearing." I can hear sounds. I know when people are talking and I know when people are talking to me. It's a question of deciphering what I'm hearing, which is what the CI will help with. Right now, there aren't that many of the "Hairs" left in my cochlea that pick up sound. As a result, my brain has sort of "forgotten" what certain things sound like. So it's the translation of sound into information. I can still hear certain things, even though some upper pitch ranges are gone, which is why I usually can't hear phones or doorbells or microwave ovens. It's also why men's voices are easier to understand than kids or some women.

Wanted to clear that up for all of you--I can still hear , I just might not be able to understand .

"Suffering"?

Here's a thought...

I just got an email today from someone who's doing the CF Great Strides fundraising walk this weekend. She said that she was motivated to do it because she knows afamily who has a 2 YO boy who "suffers" from CF.

I never used the word "suffering" or its derivatives to describe my experience. It was normal life for me. Sure, there were times that were not so fun. But "suffering" or "CF suffer" always sounded, well (OK this is punny) "insufferable" to me. It just sounds so needy/beggy/whiny.

Is that just me?