Seven Quick Takes Friday--Vol. XXI

I. 

This edition of 7QT brought to you by Caribou Coffee wi-fi. :) (mmm Northern Lite Latte!)

II. 

It has been a slooow week. I don't mean it's gone slow, I mean I've felt slow, like I'm moving through syrup. I think the ridiculously high pollen count might have something to do with that, even though I'm not technically allergic to anything. Claritin has been my friend this week. 

III. 

No blogging this weekend--I'm going here for a silent retreat. (You may remember I've done one before.) The weather is looking sort of blah, which is too bad, because the grounds are beautiful, but I"m sure it will be a fruitful weekend nonetheless. 

IV. 

I really do like the silence. If you know me, you may find this hard to believe. But it's so wonderful to take a break from computers, phones, television--noise in general--and attempt to listen to that still small voice.

V. 

Books of 2010: No Time To Wave Goodbye (really good), A Thousand Tomorrows (very, very bad). Mother Angelica's advice book, and her book on the scriptures. Also reading Deep Conversion/Deep Prayer, The Eternal Woman (bringing this on retreat) and The King's Good Servant.

VI. 

Great music stuff this week. I'm singing "Wouldn't It Be Loverly?" and "Stranger to the Rain" at an open mic event next week. And I joined St. Pat's choir! First up--singing for Confirmation on Sunday. 

VII. 

A housekeeping note: I do update the tabs on the top of the page, from time to time, so check it out! My vocal repertoire (under 'theater') gets the most updates, but I've also added video and stories about my transplant to the transplant tag.

CF bookshelf: A Thousand Tomorrows by Karen Kingsbury

In general, if I see a book has a CF angle, I try to avoid it.

Usually it's milked for maximum trauma and tragedy, and bears little to no resemblance to actual CF life. This was especially the case with the Lurlene McDaniel books that were so popular when I was in high school. If any of my friends read the ones with the CF characters, I cringed. The biology books were bad enough (so outdated!)--did fiction writers need to make life harder, too?

However, I am always open to being surprised. And I have been--once--with the book A Little Love Story. Not only is it a great novel, but CF is portrayed realistically! And some of the proceeds from book sales go to the CFF, so if you haven't bought it, um, do so.

So that brings me to the book in question, "A Thousand Tomorrows." I was randomly searching the Columbus Metropolitan Library database for CF books, and this popped up.

I general avoid her books, because, based on the plot synopses alone, they are treacly books just a step above the Romance Novel category, meaning we get stock characters doing stock character things (also known as--where Nicholas Sparks' novels are heading). But since CF was in this one, and I was going to the library anyway to check out the Oliver! score, I thought I'd pick it up.

Oh, I was so correct. Not only is it treacly to top all treacly novels, but there is so much tha tis just flat out wrong. The book was published in 2005--the year I got my transplant. So yeah, transplant technology at that time is something I'm pretty familiar with.

The author says in her notes that the inspiration for the book was a little boy on her husband's softball team. She says she talked to families about CF, and she gives information on the CFF. So that's all good.

What's not good is what's in her story. Essentially, the character with CF is used as a redemption device for the real protagonist, Cody, a pissed-off bull rider who's mad that his dad walked out on their family when he was a kid. He has a brother with Downs Syndrome, which is the reason his father left--the typical 'I can't handle it' excuse.

So Cody meets Ali, who rides in rodeos. Of course, this is supposed to be The Worst Thing Ever for her CF. Actually, any sort of physical exertion is good for CF patients; having taken riding lessons right before my diagnosis, I can attest to this! Ali doesn't breathe when she's in the arena because the dust and hay and all that can hurt her lungs. Um, if she was breathing, and exerting herself that way, she'd cough and that would be good. (And, most CF patients who are on the transplant list cannot hold their breath for 18 seconds, like Ali can in the book. Um, no.)

So Ali is admitted to a hospital in Denver after a rodeo, and her doctor springs the transplant discussion on her. Ali is, of course, shocked. Now, OK, in fairness, I was shocked too the first time my docs mentioned it. But Kingsbury's writing just makes this painful to read. Ali needs to be listed for a transplant ASAP. And of course she needs to stop riding. (If you're being listed for a transplant, most everyday things are out of the question. There's NO WAY she could've been riding. NONE.)

Well Ali wants a 'single lung' transplant, which CFers don't even get. What Kingsbury means is a "living lobe transplant", which is where two separate living donors are used to replace two lung lobes. This is generally not a permanent treatment--CFers require double lung transplants. That's a fact. The lobes will just get infected with the bugs from the 'native' lungs.

So after all this medical mumbo jumbo the reader has to digest, we get back to Cody, who loves Ali, who hasn't told anyone about her CF (this is actually accurate). They're in love. Cody wants to be a donor. Cody is a match! (Cue the inspirational music.)

Of course at this point, the story must mention how expensive all this is, how insurance won't cover it , yada yada yada. When you're listed for transplant, you meet with a financial person who works through all your options with you. Most insurance companies have some sort of transplant coverage. Is it capped? Yes (sometimes). Are your options limited,in some cases, as to center? Yes. But there is usually some sort of coverage. This is 2005, not 1985. Transplants are not exactly groundbreaking treatments here. Of course all we get here is the trite father pronoucement that "we will do everything we can to pay for it." (eye roll here)

So anyway. Ali gets her lobes (from Cody and her father). Of course we get the gloom and doom predicitions--only three years! (ARGH!!!!!!!!!!!!!!!!!!!!!!!!! I HATE THESE!) And she's talking, immediately after surgery? Um, no. You're on a ventilator for a few days. Hence, no talky.

And, of course, Ali's lobes reject and she dies. But at least Cody reconciled with his family! Which is really the entire point!

This book made me angry to read. If you've even considered reading it, don't. If you have read it, I'm very sorry you had to endure it. There are so many wrong, wrong, WRONG things in it. Even the terminology is wrong. Ali has a "compression vest", --she means the thAIRpy vest, which she doesn't describe accurately. She talks about Ali having four inhalers but never mentions an aerosol machine, which is what most CF patients use regularly. Inhalers are like a quicky treatment. Honestly, she treats CF more like asthma. Ali's mom does PT on her at one point, and Cody FREAKS OUT, like Ali's being abused or something. I taught one of my pre-tx boyfriends how to do my chest PT for when we spent the weekends at his parents' and I couldn't lug the vest (mine was one of the first ones, and it weighed about 1500 pounds...). It's not that scary, it's not even gross to watch! It's not like Ali's mom was inserting a chest tube.

The whole thing is just DRENCHED in melodrama. And Ali isn't even very likable! She's really bitter about having CF. Of course her sister, Anna, had it too, and of course, Anna died, so Ali is SUPER bitter. I'm not denying that you can get bitter. Heck, it's probably normal. But Ali is of the "ignore it and it doesn't exist" school.

It's so cliche, and so awfully written, that no one should ever, ever pick this up. Instead of doing a service to people with CF, like A Little Love Story does, by protraying us and our lives realistically and truthfully, Kingsbury makes Ali a stock character whose medical drama serves only as a plot point.

If you are interested in GOOD CF books, this is what I can recommend:
A Little Love Story
Breathing For A Living
Cystic Fibrosis: A Guide for Patient and Family (Hardcover)

Or, you can shoot me questions at janeandessie@gmail.com

The last 10 years...

 I think the last decade of my life may have been the most eventful ever. I mean, short of getting married and having kids, I can’t imagine doing more in 10 years than this.
So here’s a round-up:

• Graduated from high school (2000)
• Graduated from college (2004)
• The transplant (duh!) (2005)
• 1 ICU stint (hopefully the first and last)
• Travel! Florida (2000), D.C., NYC (including New Year’s Eve in 2003), Chicago (2006), Duck, N.C. (2008), Houston/Galveston (2009), Rochester, NY; Wilkes-Barre, PA (King’s College debate tournament), Cleveland, Cincinnati, Wheeling (Oglebay resort), Muncie, IN (Ball State debate tournament), Michigan…
• Worked on the 2000 and 2004 Presidential campaigns
• My brother graduated from high school and college (OSU), my sister graduated from high school and started at Capital
• Theater!
• Reviewed in the Dispatch twice: Verdi Requiem in April of ’01, and Parade (see sidebar for that one)
• Got my first acting paycheck
• All-State Choir, Cleveland 2000
• Sang the Christmas section of Messiah, as well as “Worthy Is the Lamb” and “Hallelujah!”
• Christmas Festival singing at Cap
• Initiated into Sigma Alpha Iota (and was a founding member of the chapter at Capital)
• First serious relationship (college)
• Engaged (for awhile…)
• Moved out of my parents’ house
• Got my first car (1995 Honda Civic EX)
• My first real job—Swim Club concession stand in 2001.
• First real real job—LSC intern, fall of 2004
• Port put in
• The Bionic Ear appears (May 2006)
• My first Coach bag. J (Hey, had to include that)
• Got on the Mac Wagon
• Grandma and Pa celebrated their 50^th wedding anniversary
• Mom and Dad celebrated their 30^th wedding anniversary
• Baghdad fell on my 21^st birthday
• 9/11
• Solo trip to Pittsburgh with Mel
• Accepted to Franciscan University’s MA Theology program
• Joined St. Patrick
• Started this blog! (2006 and counting…)
• Got my driver’s license (2000, after high school graduation. Mom made me wait.)
• Fell in love with Jane
• Read many, many, many books
• Saw Phantom on Broadway (and thus fulfilled a lifelong dream)
• More theater? A smattering: Les Miz, Beauty and the Beast, Avenue Q, The Producers, Spamalot, Wicked (Columbus and Chicago), The Light in the Piazza, Chicago, The Lion King, Into the Woods, Street Scene, Macbeth, Rosencrantz and Guildenstern Are Dead, Master Class, 12 Angry Men
• Heard Itzhak Perlman play Beethoven’s Violin Concerto with the Columbus Symphony. Brilliant.
• Lots, lots, lots of ballet. Samples: Jewels, Dracula, The Great Gatsby, Aladdin, Nutcracker, Stars and Stripes, Night moves, 30x30, Swan Lake, Romeo and Juliet
• I actually learned to like opera!
• Saw La traviata, La boheme (Opera Columbus) and began collecting Renee Fleming CDs.
• Worked with the Secret Service
• Toured the White House
• Went to the top of the Empire State Building
• Heard Mass in St. Patrick’s Cathedral
• Went shopping on the Miracle Mile
• Rode the NYC subway (one word: Ugh)
• Visited Ellis Island and found my great-grandfather!
• Attended my first black tie dinner

Seven Quick Takes Friday Vol. XIX--The New Year's Edition

I.

Happy 2010 everyone! I hope you have a blessed year full of love and fun with family and friends.

II.

New Year's has never been a big holiday for me or my family. I had a boyfriend in college who loved it. It might have been his favorite holiday. Me? Not so much.

III.

That being said, I have been to NYC on New Year's Eve, which is the pinnacle of NYE activities in the U.S. It was crazy, but fun, and I'm glad I did it. It was during my senior year of college, where seven of us crammed into an NYC hotel room for two nights. That was really my first time in the city for longer than one night (I had been, once, in high school, to visit my Aunt who lived there), and it was magical. Cold, but magical. Since it was 2003, the rebuilding of ground zero had not yet begun, so my friends and I went to see the site on New Year's Day of 2004. It was a solemn way to begin the new year, but also appropriate that we went and remembered that day and the brave men and women who died.

IV.

I don't usually make new year's resolutions, either; I'm never able to keep them, and, when I did make them, they were usually something like, "stop biting my nails." Which, as anyone who knows me knows, hasn't happened in the 20+ years I've been making that resolution.  That doesn't mean I don't believe in self-improvement; I've just never been good at New Year's resolutions.

V.

That said--I do have some ideas this year. Pay off the rest of my credit cards, finish my MA pre-reqs (or at least 4 of the 6, if I don't get to all 6), and get in shape. My best friend is getting married in August, so that's definite motivation to look my best at the wedding. I have eight months and change to do something about it, so I intend to.

VI.

And there are some big things to look forward to this year, namely, my five year anniversary.

Five years! Can you believe it? I sure can't. In July, we will hit that milestone.  FIVE YEARS! (can you tell I'm super excited?)

VII.

My Christmas vacation ends on Monday, but I still have THREE MORE DAYS. It's been a great Christmas season. Enjoy the rest of it while you can!

I want to get a double lung transplant asap *--43 things note

Note: This is an entry I wrote for the "43 Things" site, where people list goals they have for life, the upcoming year, etc. This is someone's goal for this year, and I wrote about my experience. 


"The best experience of my life. "

How I did it: I was listed for a double lung transplant in May of 2005 after an evaluation at Nationwide Children's Hospital the previous March. I was twenty-three years old. I received my transplant on July 11, 2005.

How I did it isn't really relevant for transplant--you get listed, and you wait!

Lessons & tips: Be patient. It's so hard...I am the most impatient person in history. But you'll drive yourself crazy waiting for the phone to ring. Try to live as best you can without over thinking things. The call will come when it comes, and you can't hurry that.

A good support system is crucial--friends, family, etc. You need to be able to discuss important things and you need people that will help you pre and post surgery with the medical and PT regiments.

Resources: I had a great transplant coordinator, and good friends and family support, so I was able to talk to a lot of people.

It took me 40 days.

It made me SOOO happy!

See more progress on: I want to get a double lung transplant asap

Whoa

Patch jobs on lungs before transplant

I'm going to hope this didn't happen to me. Although I know that my lungs were too big, and needed trimmed, as it were.

Sobering stat from the article: barely 50% of lung tx patients make it to 5 years.
I'm almost there!

Another Gift of Life

On Tuesday, my friend Kelly received a double-lung transplant at Children's. Yay!
She'd been waiting for awhile, so this is excellent news.
She also has a little girl.
I know that most (all?) of you who read this blog are organ donors, but if you're not, sign up.
If you do, more people like Kelly can get that second chance of life.

Trust

For your AM: some organ donation awareness:

Medical mistrust dissuades people from being organ donors

By James Cummings, Staff Writer

10:00 PM Friday, August 28, 2009

Daytonian Karen Stokes underwent surgery Friday to become one of the lucky few to receive the transplanted organ she needs to survive, according to University Hospital in Cincinnati.

But there are about 3,000 Ohioans waiting for transplants right now, and there aren’t nearly enough donors to go around, said Cathi Arends, community relations director for the Dayton region of Life Connection of Ohio.

Life Connection facilitates the completion of transplant procedures and promotes organ donation through educational programs.

“Ohio is doing well,” said Arends. “About 54 percent of eligible people are registered to be organ donors, and that’s positive.”

Of course, that means nearly half the adults in the state have not decided to be organ donors. Psychologists and pollsters who have studied the issue say choosing whether to be an organ donor is a complex personal decision.

About 95 percent of those who elect to be donors in Ohio register themselves as organ and tissue donors at the time they apply for or renew their driver’s licences, Arends said. More information is available by calling Life Connection of Ohio at 1-800-535-9206, or register online at www.donatelife
ohio.org.

Those who choose not to register as organ donors often base their decision on their desire that their body remain intact after death, researchers say. A study in the July 2008 edition of the Journal of Health Psychology found that “cognitive-based factors (such as knowledge about donation) are less influential on the decision to donate than noncognitive variables such as the desire to maintain bodily integrity, worries that signing a donor card might ‘jinx’ a person, and medical distrust.” (Your body is kept in tact--it's not mutilated or anything. You look normal for the burial. No worries there. This isn't some sort of Frankenstein monster procedure.)

Medical distrust seems to be a universal issue. A report in the October/November 2006 issue of the Journal of Health Communication said among the main reasons survey respondents in southern California gave for rejecting donation was “fear that medical personnel might withhold care from identified organ donors, suggesting lack of knowledge and mistrust of the health care system.”

Religion can have a complicated impact on the decision to be a donor, according to a study in the 2007 edition of Health Communication. In that study, women with strong religious connections were likely to be donors because they saw donation as a charitable act. Men, on the other hand, were inhibited from donating by religious-based concerns about keeping the body intact. (Note: All major religions--every single one!--is in favor of organ donation as an altruistic act. All of them)

Arends said that major religions are generally supportive of organ donation, but she suggests that people with concerns on religious grounds should discuss the issue with their own spiritual leaders.

A Life Connection fact sheet states that a single donor can provide organs and tissues for up to 50 recipients. Donation does not restrict funeral services, and the families of donors will not pay or receive fees when organs are recovered for transplant.

Boden Fall '09 Questions

The quarterly "Qs from the Boden Catalogue"

• Worst fashion faux pas: My all-yellow (BRIGHT yellow) outfit.
• Favourite birthday present: contacts when I turned 14
• Favourite bedtime story: Sleeping Beauty
• Question I'm always asked: "So, when do you graduate from college?"
• Favourite English word: Prententious
• Most embarrassing phobia: Making unsolicited phone calls (but I can't do that anymore anyway, thank you bionic ear)
• Best thing about the 1980s: My birth
• What gets me out of bed in the morning: um....
• Most memorable road trip: Columbus to DC, winter '04
• If men got pregnant: Humanity would cases to exist
• Best way to flatter a man: LAugh at his jokes
• My cure for insomnia: milk
• What music would you listen to on a roadtrip: Anything with a good beat.
• In my next life I'm going to be: Queen of England
• Essential items to take on a road trip: Cell phone, water, map
• I always wanted to be : a ballerina
• Favourite farmyard animal: horse
• First love: Josh
• What makes you smile when you're having a bad day: "Pearls before Swine"
• I always forget: People's names the first tiem I meet them.
• Most extravagant purchase this year: my new MacBook
• Favourite party outfit: dress, pearls, heels
• Favourite accessory: pearls
• I feel more confident when: I have a great outfit
• Best restaurant anywhere in the world: Lupa, NYC
• What really bores the pants off me: NASCAR races
• What you must have on a girls' night: My camera
• Favourite cocktail: Key Lime pie martini
• The sexiest man alive is: Daniel Craig
• Best way to fall in love: slowly
• What song would you sing in a big, echo-y stairwell: "I will survive"
• Favourite fantasy: Living in the OBX with my family, writing a book
• I've never mastered: Math
• Best way to flatter a woman: tell her she's pretty
• To prepare for a night out, I: Take a long bath
• What is your best party trick: Keeping the food stocked
• Hangover cure: N/A
• Most memorable occasion of my life: Getting the t/x call
• I'm superstitious about: walking under ladders
• How do you plan to celebrate your next birthday? Dinner with all my friends
• Favourite party tipple: Champagne
• Who would your ideal party partner be: Patrick Wilson

Random thoughts, linkage, etc.

• OK, yes, I've been AWOL for a bit. But between the Penguins winning, insanity at work, and friends' visiting, it's been busy here!
• So, first, some linkage. This is a great, great blog post. Really great. Go. Read. 
• Above I mentioned I had friends visit this week. Who? These two: 

That, my friends, is Karen, my transplant nurse, and her adorable, soon-to-be-one-year-old daughter, Paige. Paige was focused on the bit of lucky muffin that Karen was holding out--and Paige loved them. Every time she had a bite, she did this little head-bang/nod thing. It was adorable. Karen hadn't seen my apartment since I first moved in, so there were lots of changes! In honor of Paige's birthday, I got her Go, Dog, Go! which was my brother and I's favorite Dr. Seuss book when we were kids. I would read it to him over and over. We actually have that on videotape at my parents'--me reading to Bryan in my dad's big recliner. I was doing all the voices, too. Bryan was entranced. 

• And yeah, speaking of the Lucky Muffins--Pens up 2-0 in the Eastern Conference Finals against The Carolina Hurricanes. Game 3 tonight in Carolina. 
• Also in sports news: this is a good column. 
• In MA news: working on both classes, slowly but steadily. More up at CPG later. 
• The unread book pile? Remember this?

We're working on it! David Copperfield is actually being read, and I'm making progress! Of course this weekend starts the Great Jane Re-Read (I think this is the fourth year for it? Not sure), wherein I re-read all of Jane. I will be starting with 

S&S later today. 

• OK whew. I think that's it for now. More as the long weekend progresses....

Emology

(From Jane) 

1) What is your salad dressing of choice? Italian

2) What is your favorite sit-down restaurant? Bon Vie! 

3) What food could you eat for 2 weeks straight and not get sick of? PIZZA

4) What are your pizza toppings of choice? pineapple, sausage, pepperoni, cheese....

5) What do you like to put on your toast? peanut butter

6) How many televisions are in your house? 1

7) What color cell phone do you have? red

8) Are you right-handed or left-handed? right

9) Have you ever had anything removed from your body? major organs :) but other than that, no. I still have my tonsils. Go figure. 

10) What is the last heavy item you lifted? all my computer stuff, up the stairs into my apartment. 

11) Have you ever been knocked unconscious? Knocked? No. Unconscious due to drugs/medical conditions? Yes

12) If it were possible, would you want to know the day you were going to die? No. Absolutely not. 

13) If you could change your name, what would you change it to? I like it. No changes. 

14) Would you drink an entire bottle of hot sauce for $1000? Sure. As long as I didn't have to keep it down. (yeah, I stole this from Jane. )

15) How many pairs of flip flops do you own? Three. 

16) What’s your goal for the year? be happy

17) Last person you talked to on the phone? I don't really talk on the phone, but it was probably mom. 

18) Last person you hugged? My grandpa

19) Favorite Season? summer/end of summer into fall

20) Favorite Holiday? Christmas!!!

21) Favorite day of the week? Saturday

22) Favorite Month? August/September

23) First place you went this morning? church in PA

24) What's the last movie you saw? The Hiding Place 

25) Do you smile often? Yup

26) Do you always answer your phone? My favorite button ever is iDivert. (OK, stole this again too, but I love it!)

27) It's four in the morning and you get a text message? I'm not even aware it happened. 

28) If you could change your eye color what would it be? I wouldn't

29) What flavor drink do you get at Sonic? Anything. Sonic's drinks are the best. 

30) Have you ever had a pet fish? yes. Twice. Both times they died. 

31) Favorite Christmas song? O Holy Night

32) What's on your wish list for your birthday? Well I just had one....I got books/DVDs/ a fun Magic Kingdom mug. :) 

33) Can you do push ups? Um...probably a couple. I can do plank pose. :) 

34) Can you do pull ups? Ha. Ha. NO. 

35) Does the future make you more nervous or excited? very very excited

36) Do you have any saved texts? Yup

37) Ever been in a car wreck? a couple

38) Do you have an accent? apparently, some people thing I do. I'm from Ohio, we're known for being "accentless"

39) What is the last song to make you cry? "Do What You Have To Do"  (I'm not counting songs I sang whilst crying onstage. That's called acting folks)

40) Plans tonight? unpack, read Parish Council materials, clean. Yes, I really have to clean. 

41) Have you ever felt like you hit rock bottom? Yup. 

42) Name 3 things you bought yesterday: Candy for my cousins at my other cousin's school musical. :) 

43) Have you ever been given roses? Heck yes. I had one boyfriend who was particularly good at that. 

44) Current hate right now? That I have to vacuum. I really hate vacuuming. 

45) Met someone who changed your life?  Yup. 

46) How did you bring in the New Year? I stayed home.  Yes, I am boring, but I'm not a big New Year's Eve Girl. I spent it once in NYC, and that was plenty. 

47) What song represents you? There's not one. There's a million. 

48) Name three people who might complete this? Not sure. 

49) What were you doing 12 AM last night? sleeping at Grandma's house in the bottom bunk. Good times. 

50) What was the first thing you thought of when you woke up? It's morning ALREADY? 

Seven Quick Takes Friday

--1--
Home for day two of plague, or whatever this is. Lungs are fine, probably just a virus or something. I think after a good, sunny weekend here (and Scali's food) I'll be fine.

--2--
One of my bestest friends, Liz, sent me this book for my birthday. I received it yesterday via UPS, and I am addicted. The trilogy is set in Sweden, in the Middle Ages, and follows Kristin, the title character, from her birth to death. It's absolutely enthralling. Liz wrote on the card that it's one of her favorite books, and I can see why. It took a lot of will power to get away from it and come write this. Trust me. Sure, Kristin can be a bit of an idiot at times (especially in book one, "The Wreath") but it's just absorbing. If you're taking a long flight or a trip this summer, bring this book. I guarantee you, you will be absorbed and entertained. These characters LIVE with you, they get into your soul. It's awesome. (And there's a MOVIE! Of course it's about $100 on Amazon. But I love the fact that it exists.)

--3--
Watched Slumdog Millionaire yesterday. I also got this for my birthday but I was slow in watching all my movies, so I finally got around to it. Very good. Not sure if I liked it as much as "The Reader". They are so vastly different. I did love Dev Patel's work. The captioning of the Hindi drove me nuts--it wasn't on the bottom of the screen, it was all over the place, and it was in color, which made it really hard to read against the screen. So not so much there. If you don't know how it ends, then it's thrilling. Even if you do know how it ends, the last few scenes between Jamal and Latita are so well done, it's very uplifting.
Bonus: This movie made me want to read The Three Musketeers.

--4--
Prayer request: Please pray for one of my friends, whom I've known since high school, who was just diagnosed with MS. He was received into the church on Easter Sunday, too. He's a great guy, and prayers would be most welcome.
Yesterday, when I first heard about this, I was thinking that we are on opposite sides of the illness spectrum. He is learning that his body can, at any time, betray him. Symtoms, quirks, all that has to be monitored and watched. I, after years of this, am trying to learn to disable that alarm, so that I can realize that, yes, I can get 'just a cold' and the world will not end.
Both of these are hard lessons to learn. Both go against the inherent thinking of your mind.

--5--
Spring has arrived (again?) in Ohio. The daffodils and tulips are blooming, and some of the trees even have all their leaves. It's beautiful.

--6--
Music: Been listening to lots of random things lately. Verdi's "Requiem" (nothing like that last movement, nothing); the "Set Your Life to Music" reading CDs of Bach, Beethoven and Brahms (the Brahms just ended a few minutes ago); mix CDs in my car. Spring brings out the music in me.

--7--
Making plans for my annual summer vacay--this time to Houston, to visit Diane, her husband Matt, and their new baby girl Susan. But I am also going to try to get to NYC in October. The Met is doing "Aida" and Renee Fleming is performing in Strauss' "Der Rosenklavier", one of her big roles. I might spend a whole weekend in NYC seeing opera. The met actually sells tickets that way--you can buy a "three opera package", where basically that's all you do for five days. You see opera. I would love that. Especially Renee. And I've never been to NYC in the fall. I bet Central Park is just gorgeous in October.

Happy birthday to...ME!

It's my birthday!
I am 27 years old.
I am so happy to be 27. I love getting older, and being healthy!
If I hadn't gotten my transplant, I wouldn't have seen 24.
Thank you, Suzanne, for giving me this wonderful birthday.

Living it up

In German Village, one of the more posh sections of central Ohio.
Karen (my t/x nurse) is out of town with her husband and adorable child--they went to Baltimore for a wedding. So I am watching the dogs and staying in their house.
It is great--built in the 1900s, and only 1/2 mile from the Book Loft, one of my favorite independent bookstores.
The dogs are also very cute and low-maitenance. Whew.

A lovely night

Once again, another FANTASTIC opening.
Everything clicked. We had a great, responsive audience; beautiful music....cast camraderie. Everything was wonderful. Really.
Just had my friends over for a post-show breakdown!
Thanks to all who came tonight (we almost had a full house!) including:

• Mr and Mrs. Dulmage
• Tiff and Bill
  
• Tom and Andrea (from Indy, yay!)
• Branden
• Gary and Amanda
• Amy from J&H
  
• And Rita and Beth, my two best CF nurses!!!!
  

Wonderful, wonderful, wonderful, all the way around.
Tomorrow will be just as good, I think.
Now, to sleep!
Pics, etc. up tomorrow (possibly post-matinee).
Of course, none of this would have happened without Suzanne. I hope she was watching tonight.

OPENING NIGHT!!!!!

"Opening night....it's opening night!"

Again!!!!

I can't wait to bring this wonderful show to all of you.

And, as always, it wouldn't be possible without Suzanne. Thank you.

A Health Care Rant

OK real quick--

in a lot of papers yesterday, there was a story about how millions of people can't afford their prescription drugs. OK. This isn't really new. 

Some of these stories allowed comments beneath it. This is where people continue to amaze me. They talk about the evil corporate drug companies who are just out for profit, and it's all their fault!

As Mitt Romney said back in February '08, Drug Companies Are Not Evil. 

Do you know how much it costs to develop a new drug? How many trials have to be done? How many scientists you have to pay, lab time has to be bought, oh, and ingredients? How much trial and error before you get a drug that actually works? 

This costs money. I'm sorry. And yes, drugs like mine, which fewer people take, costs more, because not that many people need tac or imuran to stay alive. 

Look--the U.S. develops a TON of new drugs. This costs money. So you can pick--have the drugs available, or don't have them available, which means certain things, like transplants, can't happen, because we can't solve the rejection component. 

It's expensive to stay alive. I know. Should it be this expensive? Discuss. But please do not just blame it on the drug companies. 

Political Correctness--in TRANSPLANTS???

From today's Dispatch:

• UNDER THE old system of distributing livers for transplants, the preponderant factor was how long a patient had been on the waiting list, and black patients were more likely to die than white patients. That's because blacks tend to wait longer before putting their names on the lists.

But since 2002, organs generally go to the sickest patients. And that has made the system more racially fair.

Strangely, though, the change has resulted in a rise in the chances that women will die or become too sick to receive a transplant.

Why the change seemingly has worked against women is unclear, so experts should be hesitant to tweak the policy. Transplants should not be based on race and gender.

OK, look folks--SICKEST PATIENTS GET THE ORGANS. That's it. That's the way it is. There are too few organs to go around without dilly dallying about GENDER! Get real!

Oh, and just in case you didn't notice--I'm a girl. I got one. So let's move on, please.

Mel update

Mel is back home. She can't eat *real* food for like a week, which totally freaked me out. If my docs said I couldn't eat for a week, I would be dans l'hopital. She can drink stuff, but that's about it. It would be IV fluids for me!

Anyway, apparently some pill she was taking for the cellulitis on her leg got caught in her esophagus and didn't dissolve, leading to a very, very irritated esophagus. 

(Mel tends to have very odd things happen to her.) So after the test today, and once she could eat "food" (which probably meant clears, such as jello and broth--the joy!) she was sent home (much to dad's relief because he HATES hospital weekends. Hates them. Not that anyone really likes them as it is.). I would imagine she'll be at home until she can actually eat. 

So another medical mystery solved.

In my world,  I am NOT HAPPY with the new triglyceride drug that Dr. A has put me on. It's some "N" drug (I forget what it's full name is, and I'm not going to go turn all the lights back on to check, LOL) that, apparently, is NOT doing it's job, because my triglycerides are only down a little bit. 

This drug is a drug that has "instructions", which I hate. That means you have to take it at a certain time, with a certain food, with a certain drink. OK  FINE.

But even if you do all that, you will still get what the med sheet calls "flushing" of the skin. 

You would think that means you just feel warm, right?

No. 

Warm I could handle. 

What this is feels like a full-body sunburn, complete with a very, very itchy rash. If my skin wasn't red before, it is now because I am scratching like mad.

The thing that REALLY annoys me? I took this drug three hours ago. 

Now it's Friday night, so it doesn't really matter too much if I get to bed late (I cannot, cannot sleep when this is happening). But during the work week? Yeah, sort of matters. And it had to be taken "before bed" so I'm sort of screwed. You have to drink milk with it--I drink tons, which really isn't great for me, because it clogs up everything and I just don't prefer it. And STILL this happens. If I had long nails I'd probably be bleeding. 

It also makes me super tired, which isn't good for anything else, because all I want to do when I go home is sleep. Not cool when I have ballet, parish council, choir, and, oh yeah--work. 

So I will call the powers that be on Monday. My next appointment isn't for three weeks, so I want to deal with this NOW. 

OK Medical Rant done. :) 

PSA: Vaccines!

OK everyone, listen up:

Please, for the love of all mankind, especially us immuno-suppressed ones: 

GET A FLU SHOT. 

Please? For you, the flu might be a pain. But for someone with a suppressed immune system, it can be horrible. The flu kills kids and adults every year--normal kids and adults. 

I work in an office with 6 other people. If one of them gets sick, then all of us are exposed to it, but they can probably handle it better than I can. I don't want to miss weeks of work and have to stay in the Resort because someone didn't get a flu shot!

This applies to other vaccines, too (except for HPV, which isn't transferrable in any way other than---sex). Please, please, please get yourself and your kids vaccinated. I know this is a hot topic, but "herd immunity" is not something I am prepared to take lightly. Kids might be fine getting measles, mumps, chicken pox. It can wreak havoc on others (like chicken pox in adults). 

Plenty of people are immuno-compromised, and you probably don't know it. People who have had transplants, who are getting chemo, etc. are all in this category. We can try our best to avoid large crowds of people and reduce our chances of getting sick. But we do have to work and be out Amongst You the rest of the time. 

So please, get vaccinated. You don't want the flu, do you?