Tattered Bookworm

Talk Wordy to Me Tuesday

2011-02-22T07:47:00.000-06:00

In eighth grade I had to write a paper on an animal. I chose Sea Otters. I remember thinking the material was so dry - black and white. Otters eat this. Otters do that. Boring. I struggled with the introduction for so long because I wanted it to have some meaning. I stumbled across the 1990 issue of National Geographic - they had a big story on the Exxon Valdez oil spill in Alaska. This was the opening quote from the article (which, is still emblazoned in my memory almost 20 years later):

"In the beginning, when the supertanker Exxon Valdez gutted herself on Bligh Reef and vomited 11 million gallons of crude oil into Alaska's exquisite Prince William Sound, it seemed truly like the ending of a world." -- National Geographic, 1990

That was the quote that started my love affair with words. It captured the essence of something horrific and profoundly lasting. That quote gave a voice to the oil spill. It breathed life into Prince William Sound. The words juxtaposed the serene beauty of the Sound with the intensity of the oil spill. It was raw and powerful (and later was the reason why I refused to by Exxon gas when I got my first car). It became my introduction for an otherwise lifeless paper. That's when I realized the power of words. 20 years later, scores of books and quotes later, it's still the best thing I've ever read. It opened up a lifelong love of words for me.

Talk wordy to me!

xoxo

Photograph by Natalie Fobes, National Geographic

R.I.P. Microwave Cooker

2010-07-12T11:04:00.000-05:00

Dear Microwave Rice Cooker,

First, let me say that I am deeply disappointed. I'm disappointed in how badly you performed last week. In a sentence, it was appalling at best. You completely gave up on me. Granted, I did exhaust you and tax your ability to keep up the good fight. But seriously?! Melting is a little extreme, don't you think? Just because I accidentally cooked my rice at 25 minutes on full power instead of 50% power doesn't mean you need to have a mental breakdown on me. You left me with black rice and burnt gooey plastic. You are no better than a child! My apartment now smells like burnt plastic (possibly permanently) and I fear that every time I use my microwave toxic plastic chemicals are leaching into my food!!

All that being said, thank you for you faithful and undying service. You have provided me with years of rice-cooking ease and enjoyment. Perhaps one day you will be able to withstand my abuse!

Love,
Rice-Cooking Goddess No More

Three Little Birds

2010-04-08T08:55:00.000-05:00

There are days when life gets overwhelming. For me, most of the days have something to do with health insurance, medical bills and any combination of the two. About a month ago, I went to a health insurance meeting at work to hear about the changes in the plan. Currently, I'm on a COBRA plan with fabulous benefits. In November, I will be switching to a new plan. It's not so horrible, but the change in prescription drug plans is life-changing. I will be moving to a 4-tiered drug plan where the 4th tier copay is 25% of the cost of the drug. The copay for just two of my CF drugs comes out to roughly $1600 a month. The good news is that tier 4 drugs cap at $2500, then the plan pays the full 100%. The downside is that I reach this in two months and I reach this yearly. Right now, I have several copay assistance programs and after much stress and worry, I got confirmation that they would pay the increased copays on my drugs. Help is on its way!

Here is where it gets tricky. Currently, I qualify for assistance because I don't make enough money. A and I have talked about marriage and we both know we want to spend our lives together, but when A and I get married, we will collectively make too much money and no longer qualify for aid. However, we won't make enough to just throw around $7500 yearly (this includes the $5000 out-of-pocket maximum which I always reach and surpass).

For the time being A and I have decided to not get married - maybe we will have a pseudo marriage but nothing legal. I don't want to pass up the financial aid. Most of you will probably accuse me of treating marriage as a business deal, but for me, at the end of the day, I would rather not spend that much money yearly on CF. To me, that is letting CF take the driver seat. I may have CF, but I'm in charge of my life. I don't need a piece of paper to know that A loves me and I'm his family too.

When there is danger at the door, I listen to Three Little Birds. This song moves me - it touches my soul, it settles deeply within me. When I hear it, I think of the scene in I Am Legend with Will Smith and his dog, huddled together in the bathtub listening to the things that go bump in the night and this song playing in the background. This song keeps me sane on the most stressful days - the days when it feels like the floor dropped out and the road ahead is entirely uphill and maybe even insurmountable. Three little birds - they ground me in reality and give me the strength to carry on and the knowledge that yes, everything will work itself out in the end.

Three Little Birds by Bob Marley
Don't worry 'bout a thing,
'Cause every little thing gonna be all right.
Singin': "Don't worry about a thing,
'Cause every little thing gonna be all right!"

Rise up this mornin',
Smiled with the risin' sun,
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true,
Sayin', ("This is my message to you-ou-ou:")

Singin': "Don't worry 'bout a thing,
'Cause every little thing gonna be all right."
Singin': "Don't worry (don't worry) 'bout a thing,
'Cause every little thing gonna be all right!"
[ Find more Lyrics on http://mp3lyrics.org/acb ]

Rise up this mornin',
Smiled with the risin' sun,
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true,
Sayin', "This is my message to you-ou-ou:"

Advice from a Crew Cox

2010-04-05T10:02:00.000-05:00

My front door overlooks a lake. It's a beautiful sight to behold first thing in the morning. Every morning the Texas Crew team practices on the lake - rain or shine, freezing weather and all, they are out there "racing" every day. Anyway, a few weeks ago I was standing outside my car at 6:45a waiting for A to finish gathering his stuff for the day so we could head to work. The coach was talking on her megaphone about muscle exhaustion. She said that with the long races, your muscles WILL reach exhaustion and you have two choices - either push through it and keep going, or let the exhaustion win. Her advice struck a chord with me and made me re-analyze my excuses for skipping evening treatments when I'm tired.

We all have those days - those days where you are completely exhausted and don't think you can even move one toe, let alone your entire body to get up and get your treatments started. For me, most of these moments happen late at night. I get up at 5:30a most days of the week and by 10p I'm tired. Granted, I'm a night owl so some days it's midnight before I get to bed. And after about 8p, my motivation and energy for doing my last nebulizer treatment wanes quickly. It's so easy to talk myself out of that last treatment. It's late at night when I'm battling myself that I remember what the coach said on the lake that morning -- I can either push through it and rise to the challenge or let it slide. As P once said, I am the architect of my own misery (or in this case, my own stupidity) - I choose to stay up late. Skipping my treatment because I'm tired is a poor excuse, especially when I have myself to blame. I'm only cheating myself. And, in the end, staying up an extra 30 or 45 minutes to do it can't be nearly as bad as suffering through muscle exhaustion in a crew race...

I guess waiting on A to get ready has it's upside after all...invaluable advice on an early Monday morning.

This is my story...

2009-12-30T20:16:00.000-06:00

There's a moment. A moment when it clicks for you. It's the moment when reality settles in and you see things from a different perspective. This past November was my moment. I'm not really sure exactly when - I don't remember what I was wearing, what the weather was like, any of that. It was more like a moment that settled in, the way a cold seeps into your lungs, filling up all the empty spaces, constricting every breath. Somewhere between the visit to Dr. E's office and the day I checked out of the heartbreak hotel (f.k.a. Seton or Spa Seton) it clicked. Hospitals are my reality - the halls of 4 North are my home...

Let me start from the beginning. I was diagnosed at 11 - I had 11 years of normal childhood. No breathing treatments. No medicines. No pills. Doctors were rare. But, I did have allergies. So, at 11 my adenoids were removed and in surgery, they found a polyp. Little did I know, this first polyp would become a precursor to my sinus problems. Standard procedure for a polyp is a sweat-chloride test because for the most part, and especially in children, polyps are only found in CF patients. So begins a completely different childhood - now full of doctors, pills and nebulizers. All through high school and college I had really high lung functions. In college I even smoked socially (hold your criticism - not all is black and white) and my lung functions were still 102-105 on a bad day. I skipped treatments and never noticed a difference. As with most things however, they get worse with time. Fast forward to December 2001. I'm quite possibly the sickest I've ever been. I'm on round after round of antibiotics, eventually resulting in my drug allergy to Cipro (ironic that it happens when the Anthrax scare is prevalent). I was at the doctor's office every other day. I could not kick it as they say. By April, Dr. F decided enough was enough and I checked into Seton for the first time. I sobbed. They upgraded me to the big fancy room. The PICC nurse traumatized me for an hour - the entire experience was miserable. I didn't know any other CF patients, I hadn't "been there, done that" and didn't know what to expect or how to make it more comfortable for me. When I got out of the hospital, my lung functions were back up and I was ready to go. Look out world, here I come! Sadly, this was not the moment for me either. Tack on 3 more hospitalizations and one sinus surgery to that tally. Every single time I was in the hospital I thought "this is it, this is the last time." I never entertained the idea that it wasn't the last time. After my first sinus surgery, I was sure that all my sicknesses, allergies, hospitalizations, all of it was due to my horrible, nasty, no good, very bad sinus infection that Dr. E cleaned out (and he opened up the cavities in there too)! I started taking all my pills and doing most of my treatments (I'm not going to lie - I wasn't 100% compliant) because I really thought that doing all of it would keep me far, far away from Seton. Fast forward to early November 2009. I have to have a second surgery because I have more polyps - count 'em, 20 more, in one year no less and my lung functions are in the low 80's to mid 70's depending on the day...

This is my moment. This is where reality settles in for me.

I think there are stages of acceptance, and they start with anger. I was livid. Livid with life, with CF, with everything. I vowed never to do any of my medications again - what's the point if no matter what I do, I still end up in the hospital? Why bother spending a good portion of my income on medicines that do nothing? Bitter with baggage, party of 1, your table was ready a long-ass time ago! So I emailed my good friend P, whose cup runneth over with sage wisdom. I whine about having to be in the hospital over Turkey Day and he proceeds to tell me this story about a 17 yr. old cancer patient who was ecstatic about having chemo two days earlier because it meant she could go to her prom on Friday without throwing up from the chemo. It put my situation in perspective and I started to consciously think about the positives of a hospital visit. Then, in Run Sickboy Run, there was a post where someone asked how to just be "Abby" and Piper said it best -- you are the sum of everything about you, not just your CF. Definitely, there are days when I feel like CF takes over my entire day, even my week. But I needed a gentle reminder that I'm so much more. I'm not defined by my CF, but it's always a part of the totality of me. In my 14 days at Seton I had lots of time to contemplate my health, CF, what it all means, etc. I left the hospital with 99% lung functions and the realization that my reality is the hospital. The best I can do is be 100% compliant with my medicines and prolong the period of time between visits. It took me 5 trips to the spa to realize that the spa is part of my life. And strangely, I find comfort in the familiarity of it all. I finally found peace in the quiet of the halls at night. Don't get me wrong, I'm ready to leave at the end and there are days when I'm fed up with everything, but I'm no longer bitter and angry about using my vacation time for a trip to the hospital. The culmination of my moment ended on Christmas morning. Santa brought me some money this year and I told Santa that I was saving it for the next time I owe Seton for a hospital visit. Never in a thousand years did I think I would be so grateful for money to save for hospital bills.

2009 was a year of self-discovery for me. It was the year I learned to take care of myself. I learned that I have myself and no one else to thank and/or blame for my health. I can ask for support and I can ask A to help by not over-scheduling our lives (I already do that as it is) but in the end, the buck stops with me. It's my job to take care of me. I'm not perfect at it, and there are plenty of times when I suck at it even, but all in all, I've come a long way from the selfish college-aged kid who stayed out drinking and smoking until 3a, only to get up at 6a and start a new day. For those of you who have known me that long, you can appreciate where I started and how far I've come. I learned that at the end of the day, what matters most are the people around you. I learned that life is supposed to be fun - that doesn't mean that every single moment is fun. I found peace with doing the dishes because it means that I'm not at Seton, eating hospital food. Today P told me that the upside to having CF is that my good days are really good days, I mean really good days, especially when compared to the bad days. And if you have CF, you know what the bad days are like. I think he has a good point.

I think Harper Lee, in To Kill A Mockingbird, summed it up best: "Until I feared I would lose it, I never loved to read. One does not love breathing."

Reason No. 11

2009-11-11T11:17:00.000-06:00

I'm a complete sap for Christmas. I put up all my Christmas decorations on Monday - two little trees (one to go to the Spa later), lit garland, ornaments, etc. I even wrapped my floor lamp with garland so it would look like the lightpost in Narnia. :) Anyway, I thought of another reason why the hospital will completely rock this year!!! I am always begging to watch Love Actually. It's the best Christmas movie! And everyone in my family always says I have to wait for Christmas. Guess what?! In the spa, there is no one to say no :) Netflix, get ready, I'm borrowing a copy of Love Actually for 3 weeks and I'm watching it over and over. I dare you to come take away my movie!! xoxo

Comforts of Home @ Spa Seton

2009-11-06T10:37:00.003-06:00

A few visits back I started referring to my hospital stays as Spa visits. Although we all know that a real spa is much more indulgent, bear with me and you will discover that indeed, it is rather like a spa. For one, staff waits on you hand and foot. You don't really have to do much of anything but enjoy the day. Someone cleans up your room, makes your bed, helps cover your PICC line for the shower, hands you the breathing treatments, puts it all away, brings food, takes food away. Essentially, for 14 days you just hang out in your room and relax and "get better." From what I can tell, I would do the same thing at a spa. Likewise, it's all-inclusive. Room and board, complete with meals all in the same building. They even have a chapel and gift shop! And third, when I go into the Spa, my lungs feel abused and beaten down. When I emerge, I feel reinvigorated and energized, rather like a butterfly emerging from it's cocoon. Told you it wasn't that much of a stretch...

So, this beautiful Friday morning I decided to compile a list of home comforts and entertainment for my trek to the spa - things that I bring with me or things I like to do while I'm at the spa to make my stay more comfortable. Some of these will be new and specific for the holiday season, while others are essentials. I've become a veteran hospital resident, so I've got a few tricks up my sleeve on how to make the hospital room feel more like my room! As usual, no particular order.

1. Blankets. This is an essential! I think most of us can agree that hospital sheets and blankets definitely need improvement. They are dingy and crunchy at best, and the blankets are not even close to warm and cozy. Alas, not such a tragedy - I always bring a fleece blanket to wrap up in and a woven blanket as my bedspread. I find that when I'm sitting in bed, just staring at my pretty blanket and bedspread brings a smile to my face. And, when you're not feeling up to par, it's better to curl up in your own bedding. If I could find a sheet set for the hospital bed, believe me, I would do it but as of yet, no such luck.

2. Pillows. Again, hospital pillows are not the best. So, I bring my own! I usually bring one, but sometimes I bring two. I always bring my own pillowcases because they are softer and make sure they are obnoxious colors so the nursing staff doesn't confuse your home pillow with hospital issue. Sleep tight angels, this little trick makes all the difference.

3. Stuffed animals. There seems to be a theme to my home comforts...Anyway, I will NEVER be too old for a stuffed animal. Sorry A, but you'll have to make room for Lefty because he's here to stay. The best part of the stuffed animal comfort, is the gift shop. They sell wonderfully soft and squishy stuffed animals, perfect for cuddling. I've already put on my wishlist the pig from the shop downstairs (same designer as my elephant, Lefty) and he's got a name waiting for him too - Hiney (aptly named for the H1N1 swine flu). This year I will also be bringing my Christmas Moose. He is a nameless wonder right now so please feel free to leave some suggestions for his name in the comment form.

4. Pajamas!! I think pajamas should be acceptable attire everywhere. Maybe you already picked up on that in my last post. Anyhow, I bring lots of pairs of pajama bottoms and short-sleeve tops (so the nurses can still see my PICC line) and fleece zip-up hoodies if it's cold. The more festive, the better. I wear them everywhere. When A kidnaps me for dinner, I don't bother changing. Seriously, I have a contraption attached to my arm - what are you going to do, kick me out for improper attire? Please! It's Austin. Get over it! This year I'll be wearing mostly Christmas pajamas to celebrate the season. Just because I won't be at home for the first part of the holidays, doesn't mean the holidays can't come with me to the Spa!!

5. Hand and foot creams. This may seem silly but the hospital apparently doesn't have this. They have an abundance of antibacterial soap, which dries out my hands. Having sensitive skin, I buy the L'Occitane Shea Butter hand cream which is so luxurious and rich. It's like heaven in a tube. Rub this on my hands and on my feet, slip on socks and slippers, grab my latte and I'm good to go. I'm a happy camper for the morning.

6. Laptop! The advent of wireless internet in the Spa has made the day so much more fun. I almost miss it when I leave and go back to work. I can spend all day chatting on Facebook, playing Farmville or Mafia Wars or Vampire Wars (don't laugh - they are great for playing while doing your neb treatments), playing Gamehouse games, watching Food Network clips, reading emails, etc. It's my connection with the outside world. I can watch DVDs (entire seasons of shows I've missed even). I can instantly stream Netflix movies (althouth, to be honest, the connection isn't quite fast enough yet but hopefully they will upgrade their internet services soon). I don't use my laptop for much of anything, but if it dies on me, I'm replacing it before I go in for my visit because it's essential.

7. Seasonal decorations. Christmas is my absolute favorite time of the year. I love all of the twinkly holiday lights. I love going to the mall and looking at all the displays. I love the idea of a wintry cold Christmas with snow (but, living in Texas, it's all a dream). I love hot chocolate from Williams-Sonoma (they sample it all season with their chocolate marshmallows), hot apple cider, the Trail of Lights, The Nutcracker, Christmas songs, holiday parties, etc. I am in LOVE with the whole season. If I could I would leave up my tree all year. I live in an itsy bitsy teeny weeny apartment with A and I always find room for Christmas lights and the tree. In fact, since I'm missing two weeks of my season, I'm starting early and putting my decorations up this weekend. Anyway, I thought this year I would bring some of Christmas with me so I'm getting a small pre-lit tree and festive non-breakable ornaments. I'm going to drag in the lit garland too. It's going to be a Christmas bash in my room, complete with music. :) I can still hear the sound of the bell at Christmas, can you??

As a side note:
I've signed up for my first read-a-thon! I got the idea from reading the Devourer of Books blog. She just participated in one recently and had a link for another one this December. This one starts at 6a PST December 5th. It's 24 hours of reading bliss. Since I'm going to be so "busy" in the hospital, I thought I would participate. Click on the image below if you're interested in joining or reading more about the event.

Spa Seton - My Favorite Things

2009-11-05T07:43:00.002-06:00

With an impending hopsitalization on the horizon, I thought I would compile a list of my favorite things (a.k.a. the silver lining) about the hospital (affectionately referred to as Spa Seton). Mind you ladies and gents, these are in no particular order...

1. Rather than having to get up each morning, put on makeup, curl my hair and find something cute to wear, I can simply put on my pajamas each morning, or rather, keep them on! What's not to love about an excuse to wear pajamas all day? And, it's expected. I can even get coffee in the gift shop or go across the street to Caffe Teo for a spiced apple cider and they see my PICC line and bam, pajamas are instantly perfectly acceptable attire. 14 days of pajama bliss without makeup and hair!!

2. No dishes!! I loathe dishes. They are the bain of my existence and the number one reason why I don't cook all the time. I hate doing them. I hate drying them. I hate putting them away. Dishes slightly stain the ritual of cooking. For 14 days I have no dishes but I get home-cooked meals! Sign me up :)

3. Nebulizer treatments. Now hold on before you get too excited - not so much the actual treatment as it's not my job to remember them! The RT (respiratory therapist) is supposed to remember my treatments. :) She comes in, sets it all up, hands me the cup and I breathe. Hmm, I could get used to this. Afterwards, she rinses it out and we repeat every four hours.

4. Coffee and other breaks! My doctor gives me a pass to leave for up to four hours each day. It doesn't always work out, but the nurses are super nice and they don't count the trip across the street for coffee as a "pass" so I can indulge in lattes and pastries from La Madeleine (a stone's throw from the South entrance), Caffe Teo and the cute gift shop in the North lobby. And since we all know I'm a glutton for coffee, this works out well.

5. Battle scars! Growing up, I was always the caution kid. The kid who never broke any bones and rarely came home with cuts and scrapes (minus the incident where I thought I could magically skateboard down a steep drive even though it was my first time and instead managed to reacquaint my stomach with both gravity and the gravel street). When I leave the hospital I come home with a PICC scar. You're thinking I'm mental but finally, I get to be like the other kids and show off my battle wounds!! I now have four of these white scars in my arm and they all have a story to tell.

6. The craft-o-matic bed! Remember those commercials for old people where the bed bends in all these funky shapes to make it more comfortable? Guess what ladies and gents - the beds at Spa Seton do the same thing. And you too can enjoy them, but only if you are lucky enough to stay there. They bend up, they bend down and they rise up. Adam and I like to climb in to the tiny bed, put up the guard rails (careful, it gets rowdy in our bed!), raise it all the way to the top and watch TV. The bed goes nearly to the top of the room. It's quite entertaining on a rainy day :)

7. Friends! We're all busy and we all have lots of commitments and obligations. But, I get to see more of my friends when I'm in the hospital because they love coming to visit me in the spa. :) In two weeks' time I see more of my wonderful friends than I see in a six-month period I bet. It's a great way to catch up!!

8. Nap time. I adore nap time. I took it for granted in kindergarten and all during camp, but now, I love it! I just don't get naps anymore. Ironic how that works out :(. Needless to say, I have ample time to nap at Spa Seton. There is nothing better than curling up with my pillows and Lefty (my squishy elephant, aptly named Lefty so as not to be confused with the Republican elephant) in the late afternoon when the sun peaks through the curtains.

9. Food network! I can watch food network all day long and not feel even the slightest bit guilty! Then I get out my laptop and save all those delicious recipes to my recipe box :) I could watch this channel almost all day and never get bored. It's fun waking up, catching the news, actually seeing the sunrise (usually I'm at work before the sunrise and my office is sans window so I usually have no clue what the outside world looks like until I leave at 4p) and then watching the food channel, reading, playing games and not feeling like there is something I should be doing (e.g. dishes, cleaning, etc.) As I said, I don't have to make dinner, do the dishes, clean up my apartment, etc. It's like a vacation from life and it's mundane chores.

10. Beef tips. I know, this seems out of place. Let me explain. My mom is a fabulous cook and she never cooked things like beef tips in brown gravy on rice. This is Luby's food!! Damn, it's good. Sunday evening is beef tip night. I could eat this every night. Good thing the CFers are on double portions so I can have twice as much. Sorry A, no dinner for you on Sunday nights - I'm eating my 2nd portion!!!

Deck the Halls...

2009-11-04T15:58:00.000-06:00

This past Sunday I had the opportunity to be reacquainted with Seton's emergency room. I woke up with excruciating pain in my lower right back, which prevented me from getting out of bed. It took the better part of five minutes to slide out of bed, at which point I realized I was now stuck out of bed. Every tiny movement sent sharp piercing pain through my back so I downed two Darvocetts and headed to the ER. It seems I have a pinched sciatic nerve which requires physical therapy.

Fast forward to Monday. I'm on the phone with the CF clinic asking about seeing my doctor as I was told to follow-up and I'm asked about my primary care physician. I guess most CFers have a regular doctor as well, but since this is the first real crisis I've had unrelated to CF, it has never occurred to me that I was lacking a regular doctor. After a few recommendations from trusted sources, I made an appointment for the following Monday with yet another doctor. Lately I feel like every week I have at least one, sometimes two appointments. And, I now have regular visits with the clinic for my trial drug. I digress. I'm supposed to start on physical therapy, but others have suggested trying a chiropractor or acupuncture. My friend Lauren swears by hers and has been seeing one since she was six! Another woman at work had huge success with treating her sciatic nerve problems with acupuncture. We shall see what's in store for me next week.

And last, but not least on the hospital front, I have another opportunity to see Seton's dreary 4th floor this coming Thanksgiving and early December. My lung functions have been in the low 70s for a month or so and I vowed that if they weren't up to their normal 85-95 range by November, that I would volunteer myself for a hospital tuneup since I've already reached my out-of-pocket maximum for the year with the health insurance. I did not, however, assume this would involve another sinus surgery. It turns out that I have polyps again, which need to be removed. Try to hold back your jealousy but I will be spending my Thanksgiving at Seton :) and having surgery December 1st. Don't worry, I'm bringing my Christmas Tree, complete with lights and ornaments to my room. Stop by for some holiday cheer and Christmas music, but be warned, this party will be sans alcohol. Sorry folks - egg nog without the bourbon this time...

The Book Thief

2009-11-04T15:37:00.001-06:00

Yesterday I finished reading The Book Thief by Marcus Zusak. I highly recommend this book. Written for a young adult audience, this book was a quick read but entertaining and interesting. Zusak's narrator is death, but this death is not evil. This persona of death has feelings and a soul. The story chronicles the life of Liesel Meminger near Munich, Germany during World War II. It's the story of a young girl and how her penchant for stealing books, something she can't resist, enriches the lives of those around her. Very touching, well-written, and told in a way that brings life to a dark period in time, this book is a wonderful read.

The Secret History by Donna Tartt

2009-10-23T08:15:00.001-05:00

The Secret History by Donna Tartt: The snow in the mountains was melting and Bunny had been dead for several weeks before we came to understand the gravity of our situation.
In this brilliant debut novel, Donna Tartt gives us a richly textured and hypnotic story of golden youth corrupted by its own moral arrogance.
Richard Papen had never been to New England before his nineteenth year. Then he arrived at Hampeden College and quickly became seduced by the sweet, dark rhythms of campus life — in particular by an elite group of five students, Greek scholars, worldly, self-assured, and at first glance, highly unapproachable.
Yet as Richard was accepted and drawn into their inner circle, he learned a terrifying secret that bound them to one another ... a secret about an incident in the woods in the dead of night where an ancient rite was brough to brutal life ... and lead to a gruesome death. And that was just the beginning ...

When the book opens, you know immediately what has happened. The author then takes you back to the beginning of the story and fills in the details and series of events that lead to the climactic event. It started off a bit slow for me - I got bogged down in the beginning chapters because I felt it was overkill on the classroom lecture (maybe that particular classroom lecture doesn't spark my interest). Anyway, the story and plot did pick up after a bit and then I found that I was enthralled with the story. Think Dead Poet's Society gone bad. Anyway, after the culmination of the event, for me, the story just stopped. It's like reading pages and pages about a drunk person just staggering around in a stupor, day after day with no real concept of time passage. That's what I felt like I was reading. Honestly, I couldn't get through the book because it just no longer grabbed my attention. Don't get me wrong - I love description and character development, but I felt that so much of it was based on the "event" and that after the event concluded it just trailed off....

Don't Let the Door Hit You on Your Way Out, Dear Virgo!

2009-10-15T09:53:00.000-05:00

Ever see that Walgreens commercial about the Land of Perfect where the dryer never eats the sock, groceries come right to you, etc.? And at the end it says "but we don't live in perfect" and in the meantime, there's Walgreens...

In my world, which exists only in my head, I live in Perfect (that's my Virgo-self). In Perfect, I have time to do all of my nebulizer treatments in the morning, make the bed, make breakfast, make lunch, get my coffee going, do all the dishes, put away all my nebulizer toys, take a shower, do my makeup, do my hair, get all my clothes ready for going to the gym and getting out the door and to work with 15 minutes to spare. Essentially, I leave and everything it taken care of and spotless. I come home and have time for making dinner, doing the dishes, doing my nebulizer again, exercising, reading and hopefully watching a tv show. Again, this is in "Perfect." Sadly, I've realized that I don't live in perfect. In reality, when I leave in the morning, I'm LUCKY if all of that is done. Most of the time, I've forgotten some of my meds, I leave stuff everywhere, dishes are piled up in the sink and on the counter. The bed gets made about once every 10 days. It's annoying to my Virgo-self. I leave angry and mad at myself - why didn't I have time to do all of that? What is wrong with me? I will get up earlier tomorrow! I refuse to be this disorganized, clutter-attracting person. This morning it occurred to me that I have to let it go. Do what I can, when I can and maybe rework some of my organizational techniques and then let the rest go. I will never live in Perfect and berating myself for not being perfect gets me nowhere but in a bad mood. So, sianara silly Virgo - you will no longer reign! I will still be organized and still be efficient but I'm no longer going to stress about all the things I should have gotten done or should be doing instead of enjoying life!!

Signed Bitter and Disappointed

2009-10-13T12:21:00.007-05:00

Dear Abby,

I've been with the same CF care provider since I got diagnosed, at age 11. We've had our moments and we haven't always gotten along or seen eye to eye. In the end, we've come to an agreement of sorts and until recently, I thought the world of him.

Way back when, he was the only CF doctor in town. There was no pediatric CF clinic. There were no other CF doctors. If you had CF, you saw him (also called Dr. X). About 8 or so years ago the CF clinic came about at Seton. Now, I go to a clinic appt. every 3 months where I see a respiratory therapist, dietician, social worker and the dr. All in all, I like it but it's time-consuming.

Ever since clinic came to be, I've had a hard time seeing Dr. X for a sick visit. It doesn't matter why I'm calling or when I call, I'm told to call clinic now. Even if I don't really need to see the clinic people, I'm supposed to call them. If it's not that, then he's out of the office or at clinic or somewhere else entirely.

About a month ago, I could not get through to the office. Every extension I tried went straight to voicemail. :( No return calls, nothing. Not okay. This could have been a crisis...

So, last week, I was reading about The Frequencer on another CFer's blog and was interested in finding out more. So I email the clinic coordinator (by the way, all contact with Dr. X now has to go through clinic coordinator (CC) and if it's not CF-related, it gets bounced back to me anyway) about this new machine and what Dr. X thinks, etc. Five, yes count 'em, five, days later I get a reply: "whatever she wants to do to aid in mucus clearance is fine." I'm sorry, did I miss something? Am I bothering you with being proactive about my health? Oh wait, that's supposed to be your job!! You are supposed to be calling me with news about this new mucus clearance device.

Since this is the only doctor I've ever known, I don't know if this is "normal." Do other CF care providers do this same thing? Is it my responsibility to read everyone else's blogs to find out my newest treatment options. Feedback greatly appreciated.

Signed,

Bitter and Disappointed

The Queen's Mistake

2009-10-07T13:52:00.005-05:00

I've just found a new blog which has me completely captivated. See the link above. I stumbled across Jen's blog while surfing through the Banned Books Week website. I thought I was an avid reader until I came across her blog. Jen reads!!! A lot!!! :) I could spend hours perusing her posts. Anyway, for those of you interested, she has a book giveaway right now for The Queen's Mistake. See the Devourer of Books link for her post and rules for entering for a chance to win.

Skin Wars!

2009-09-10T20:26:00.003-05:00

Dear Defective Organ (f.k.a. skin),

I hate you. I'm so good to you - I rub expensive shea butter creams all over you. I massage you. I keep you away from scented, perfumed lotions and soaps. And what do you do? You rebel! You break out in hives for no apparent reason, whatsoever! And then, you team up with the bathtub when I'm trying to mend our relationship and smooth over our problems. You evil organ! You suction-cup me to that nasty tub, putting me in tears and leaving bits and pieces of yourself floating in my once-relaxing baking powder-filled itch-relieving tub. Well, this war is not over! I will not go passively into the night. Consider this your final notice! I will win and you will cease and desist - you will not get all riled up at 3a, forcing me to drug myself with Benadryl. I don't get mad - I get even...

Signed,
Itchy All the Time

The Siren Calls Me...to my death

2009-09-09T08:53:00.003-05:00

I have a torrid love affair with Starbucks, a.k.a. The Siren. Starbucks' symbol is not entirely unlike The Siren. She sings sweet seducing songs as I walk by, and I succumb to my own death, shelling out hard-earned dime after dime. I've been rethinking this lately. For one, I'm beyond broke at the first of the month. I'm always having to move my savings to checking to cover the bills at the first of the month. I guess the money I put to savings at the end of the month isn't really getting me anywhere, is it? And, I spend an obscene amount of money at this evil establishment (I think they put Crack in their coffee so you will come back for more) considering how much I make... Someone once told me about the latte factor - essentially, if you invest that $5 a day you would be spending on coffee, in like 20 years you have $100k, or something close to that. Baby steps for me...quit going in the first place so I will have more income at the beginning of the month, then I can work on investing that extra money later.

Oh Evil Starbucks Siren, I will no longer be seduced by your music (ok, at least not daily - maybe only once a week)...

A Swim Down Memory Lane...

2009-08-25T07:35:00.007-05:00

Yesterday was my first day of swimming at the Y. Dr. Valentine had told me that being so close to the water would be good for the mucosal linings in my lungs and in my nose. So, I happily drove to the Y after dinner, excited and ready to start my swimming again...

When you look back on your childhood, do you remember swimming or riding your bicycle all day and never tuckering out? Do you remember that you could play and play for hours and miraculously you were never sore? Well, these are the visions I have of my childhood years when I used to swim on the swim team. If you ask my dad, he'll tell you a story about the JDRF fundraiser I did where people at the office pledged $1 or $2 per lap thinking that I might swim about 20 laps and be done (I was 7 or 8 after all). To everyone's surprise I swam upwards of 50 laps!! During swim practice, the coaches would have us swim an 800 or more warm up and cool down (that's 32+ laps each time). These memories were swimming in my head as I left for the Y...

I swam a 500 alternating between breast stroke and free style. It killed me. Almost literally. I don't think the elliptical or treadmill has ever done such a number on my lungs! 20 laps and I was panting, the inside of my legs were sore from breast stroke and I was exhausted. Good thing they have a hot tub!! :) My illusions of childhood were shattered. Apparently, I'm no longer invincible! And I don't remember free style ever being that difficult - with every other stroke I felt like I was suffocating and had to take a breath. What happened to holding my breath for the entire 25m length of the pool? :(

As Dr. Valentine did promise, I could definitely feel the difference. When I was done swimming, my lungs felt more open and my cough was more loose. And, it got me to cough in the first place. Plus, my nose was running. 3 for 3 - lung capacity, loosen my cough, loosen the mucus in my nose. All in all, it was a success...even if it was only 20 laps!

Day 1 of exercise regimen completed and ENJOYED. :)

Neutrophils Anyone??

2009-08-24T08:00:00.003-05:00

Last week I had my first visit with Dr. Valentine, the lung transplant doctor who is pioneering a study on neutrophils in CFers and non-CFers. What a fascinating person!! He talked to me at length about neutrophils and how they are different. Apparently, they are the first line of defense when germs come into the body. They use a salt mixture to "bleach" the area of the germs. In CFers, who have defective chloride transport channels, they don't do their job properly. This might explain why we get sick so much easier! I gladly donated my blood for this research!

He also talked to me about swimming and how much better my lung functions would be if I would start swimming regularly. Hindsight is always 20-20 - maybe that's why my lung functions were so wonderful as a child and I was so healthy. Maybe that's why it took 11 years before I got diagnosed?? Swimming, he said, is particularly advantageous because my lungs are closer to the water. CFers have a rubber cement-like lining in their lungs rather than a watery lining due to the defective chloride transport. So, I checked out the local Y on Friday. Because of my CF and minimal income, I got a great deal!! I signed up for the M & W aqua fitness class to begin with, but might add the T & Th one in October as well. I know I will notice a huge difference in a few weeks, but I also know the first few weeks will be a chore. I have never successfully started and kept up an exercise regimen but I want to be around for as long as possible!! I will keep you updated on my swimming progress...

Dr. Valentine also talked to me about using a Grossan Tip on my WaterPik to get an extra boost in my sinus rinses. He said that ideally, I should be doing this twice a day b/c CFers get more mucus build up faster than normal people. As it is, I think the Sinus Rinse with Alakalol is the best thing since sliced bread. The only tricky part is that my model of WaterPik doesn't support most of the Grossan tips. So this will be a chore. They also have a Grossan Hydro Pulse system specifically designed for sinuses but really, what's the difference?? As soon as I track one down, I will post an update.

To be or not to be, that is the question...

2009-08-17T08:59:00.004-05:00

This morning I read a wonderfully funny and poignant blog about CF and lung transplants. It was written to Cystic Fibrosis itself, giving shape and form to the disease, as if it were a real person with whom the blog author was having a relationship. The author is an attorney in New York. As most of you know, I've wanted to go to law school for quite some time. So far, the door hasn't opened yet but it's always a tease for me. I have a love affair with learning the law. But obstacles always arise - health insurance, paying my bills, can I keep that kind of stressful, hectic schedule, etc. And what about when I'm a licensed attorney - then what? Reading this blog gave me a renewed glimmer of hope, if only for a brief moment. She did it, so can I! But how does she get health insurance? When does she have time for her treatments? Then I read the line about "early retirement" and taking a hiatus from practicing law on Wall Street to prepare for her double lung transplant. Is the decline of her health separate from her busy work life or a result of it? No one really knows, but for now, I think I would like to keep my less glamorous, less fulfilling job for better health, more time, and more free time to do the things I enjoy. Life is precious and short.

Dark Skies

2009-08-12T16:01:00.006-05:00

Dark skies encircle the mid-afternoon
Smoldering heat beaten back...

Dark skies threaten in the mid-afternoon
Bellowing winds swirling into oblivion...

Dark skies unleash in the mid-afternoon
Pelting rain unabashedly hurtling into the ravaged creek beds...

Dark skies rage with fury in the mid-afternoon
Gushing puddles forming in the parched earth...

Dark skies envelope the last of the mid-afternoon light
Assaulting drops relenting in the last moments...

Dark skies remain, leaving just the remaining trickle of the rain.

Julie & Julia

2009-08-12T07:57:00.008-05:00

Yesterday, Adam and I saw Julie & Julia at the Alamo Drafthouse. We went to their feast where we had a 5-course French meal paired with delicious French wines. Here was the menu:

I
Amuse Bouche
Oyster on the half shell with aged sherry vinegar mignonette, thinly sliced rye, butter

II
Sole "meuniere"
Seared sole on boggy creek farms arugula with lemon and brown butter vinaigrette, seared heirloom tomato

III
"Hot as a stiff..."
Manicotti stuffed with a spicy lobster "thermidor" filling, petite braised cucumber soup

IV
"Piece de' la résistance"
Boneless duck breast, stuffed with pate en croute, potatoes lyonnaisse, endive grilled drizzled with black truffle oil

V
"Raspberry Bavarian cream"
Crepe filled with chevre raspberry cream, fresh raspberries, shaved dark chocolate

The menu was incredible. The courses mirrored recipes in the movie (like the Raspberry Bavarian Cream and the Pate-stuffed Duck Breast en Croute). Every course was delicious! Buttery goodness at it's best, the chef did a wonderful job of highlighting what is so enjoyable about eating with abandon. They brought the recipes from Julia Child's book to life.

Julie & Julia is such a wonderful story of two women who made a difference in their own life through cooking. Julia Child taught America to savor food. Julie Powell's project of cooking all 524 recipes in Mastering the Art of French Cooking in 365 days gave a voice to her writing. Julie Powell later commented that her project and that one year of her life showed her that life is not full of closed doors. Julia taught her to believe in something, to believe in herself and that life is full of possibilities. It changed her life.

We've become so accustomed to saving time in the kitchen. Kitchen shows, cookbooks, and recipes are full of tips and tricks to cut corners and get a meal for four on the table without a lot of prep work and with minimal expense. This experience last night reminded me that it's worth the effort and the extra time it takes to make something special for dinner because there is something deeply satisfying about creating something from scratch. Life is precious and short, why spend it trying to hurry through the most enjoyable part of the day - dinner with family? I for one, can't wait to make the Boeuf Bourguignon...