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 The biology books were bad enough (so outdated!)--did fiction writers need to make life harder, too?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

Well, thanks

So we have "health care."
I've written a lot about it on this blog. I'll try to go through the archives and pull the most relevant stuff over the next day or so. But if you're a long-time reader, you know this isn't good for kids with CF, or really any chronic disease. I am NOT happy with this decision on multiple levels,  but mostly because this will negatively impact the CF population.
We don't live that long to begin with. We don't need Congress making our lives even shorter.

UPDATE:
we can start here, with CF in Ireland.
And in Australia.

If I Never Knew You

If I never knew you

I'd have lived my whole life through

Empty as the sky

Never knowing why

Lost forever

If I never knew you.

--If I Never Knew You, Stephen Schwartz

How do you convince people that life is better than no life at all?
That all lives are worth living, no matter how painful? 

For some people...you can't.

I've written about this a few times here. But today brought it into a painful and stark perspective. There are people out there who think my life, and that of hundreds of thousands of others, is not worth living. 

Today's Dispatch held this example. I'm posting the whole letter instead of linking to it. 

My emphases in bold:

Pre-birth testing foe needs context

Wednesday,  February 24, 2010 2:51 AM

I respond to the Friday letter "Hitler would approve of pre-birth testing" from Thomas R. Marco. He references the killing of babies and asks "is reducing the statistical percentage of abnormalities worth such horrific acts?"
My answer is: You better believe it's worth it. Before others judge, they should know a little more about the "abnormalities." My daughter was born with Tay Sachs. My wife and I watched her suffer for just under three years.
We watched her slowly die and live a difficult and very uncomfortable life.
We watched and listened to her scream in pain and frustration for hours at a time. We watched her as she lost the ability to sit, to eat, to hear, to see, to do anything but suffer. Then we watched her die while she was in my arms. I carried her out to the hearse.
If any child can be spared that by pre-birth testing, then I am all for it.
Better yet, parents should have genetic testing prior to trying to conceive so that everyone's moral sensibilities can be assuaged.
Until Marco has spent a minute with a child whose short life is filled with suffering, I suggest he be more careful with his Adolf Hitler references.
KEVIN LEVINE
Bexley

So--his daughter's life wasn't worth living? 
He would have 'spared her' by not allowing her to be born at all.

This is MY letter to the editor. I sent it this morning, not sure if it will be published. But I want to share it with you anyway.
 ***
To the editor:
I was disturbed by Kevin Levine's "Pre-birth testing foe needs context" (Letters, Feb. 24, 2010). He states that "...if any child can be spared [suffering] by pre-birth testing, then I am all for it." I am sorry for the death of his child, and the pain that his family endured. But his logic is simply faulty.

Mr. Levine is essentially saying that I should not have been born, because that's the only way I would've been "spared."  I am twenty-seven years old, and was diagnosed with cystic fibrosis (CF) when I was 11. Since then, I have spent months in the hospital, had a two-week visit to the ICU, undergone countless tests, and, at the age of twenty-three, had a double lung transplant. Before my transplant, most of my days were spent sleeping. I hadn't the energy to do anything else. Even simple tasks such as brushing my teeth took enormous energy. I was in almost constant pain from the lung infections and scar tissue that are part and parcel with CF.

But I have never considered my life not worth living. I love my life.  I am a college graduate, am working on a Master's Degree, and have a good job. I have wonderful family and friends and an 11-year old godson. I have been under the care of brilliant doctors and nurses who have worked tirelessly to save my life. If I had not been born, I would have certainly spared myself and my family much suffering. But the joys of life would not have been mine, either.

My CF has made me who I am today, and I'd like to think that's a good thing. No matter what the challenges my life may have handed--and continue to hand--me, nothing is more precious than the gift of life.

Suffering cannot be avoided in any life. It's part of being human. Just because a person has to suffer doesn't mean that her life is not worth living. As Robert Louis Stevenson said, "Life does not consist in getting a good hand, but in learning to play a bad hand well." 
 ***

How can anyone--especially a parent--say that someone's life was so filled with suffering and tragedy that it wasn't worth living? How is that not monstrous?
My parents have watched all those things too, Mr. Levine. And I'm pretty sure I'll die before they will. They've had 26 years of it. 
Would I have saved my family money if I'd not be born? For sure.
Would I have saved them lots of emotional pain? Definitely
Would my brother and sister have gotten more attention? Absolutely.

Will you decide what men shall live, what men shall die? It may be that, in the sight of Heaven, you are more worthless and less fit to live than millions like this poor man's child. Oh, God! To hear the Insect on the leaf pronouncing on the too much life among his hungry brothers in the dust!

--Charles Dickens, A Christmas Carol

But...

Would they be better if I hadn't been born?
I can't answer that. If you never knew someone, how do you know what you're missing? 

But I know--and no matter what price I have to pay, it was worth it. The entirety of it.

I realize then that we never have children, we receive them. And sometimes it's not for quite as long as we would have expected or hoped. But it is still far better than never having had those children at all. 'Kate,' I confess. 'I'm so sorry.'
She pushes back from me, until she can look me in the eye. 'Don't be,' she says fiercely. 'Because I'm not.' She tries to smile, tries so damn hard. 'It was a good one, Mom, wasn't it?'
I bite my lip, feel the heaviness of tears. 'It was the best,' I answer."
--Jodi Picoult, My Sister's Keeper 

Housekeeping

The "My transplant story" tab has been updated with video! So you can get the quick gist of the blog by reading that (if you're new), or, if you're an old hand, you can see the videos. One is the longer (5 minute) spot for the Children's Miracle Network show. The other (1 minute) is a TV spot that aired on our local CBS affiliate.

(oh, and just for the record: I do not have bangs anymore. Bad look for me. And I do not normally wear gym pants in non-gym settings. It's just that no pants fit me. I weighed 83 pounds. My jeans were about "2 sizes too small." ) 

Bionic Ear 101: Hearing aids and the CI

Me and Suze at the pool in Houston. You can see the CI dangling under my left ear. 

Regular blog readers are familiar with my bionic ear (AKA, cochlear implant). I've had it for almost four years now. I'm sure that lots of people who had never heard of CIs before they met me are learning that there is a difference between a traditional hearing aid (or "listening device") and a CI. But for the record I'd like to list some of them here, so that if you ever do meet me (or someone else) with either one, you'll know what's going on.

First, I wasn't born Deaf. I lost my hearing due to a group of drugs that I took as part of my CF treatment plan, and then, post transplant, to fight a nasty infection I contracted in winter 2006-2007. These were intravenous treatments. I started noticing hearing loss in college, and, as we increased the doses of these meds, the hearing loss also increased. But, at the time, the choice was hear or die. So I chose to not hear so well and still be alive.

I received hearing aids in 2005, post-transplant, but the quality was never very great. I had behind-the-ear models, which allow for the most sound magnification. I had them in both ears.

Hearing aids amplify sound. That's it. In my case, the inner ear cells had been destroyed, so amplifying the sound didn't really help. I still had problems making out certain sounds, hearing in noisy environments, etc. So we began the CI process once it was determined that my hearing loss was profound enough to merit CI usage.

Since I was "post-lingual" (Meaning I knew how to talk and knew what normal speech sounded like) and had only had severe hearing loss for a short amount of time, I wouldn't need therapy post surgery. Some people do.

The most immediate difference between a CI and a hearing aid is that a CI is implanted--part of it is permanent--while a hearing aid is not. A CI is two pieces--the external processor (what you see in the picture) and an internal part. The two parts are attached via magnet (it's hidden under my hair, but you can see it on boys).

(In this pic-the outside part. The girl can hide it under her hair.) 

The interior part is a little tricky to understand:

That is what's in my head. The "tail" part is wound into the cochlea (hence, the name), which, (briefly) is a set of 22 electrodes that transmit sound information to my brain. Essentially, the old ear structure is bypassed, and I am deaf (for all intents and purposes) in my left ear without the CI. This is one reason I was resistant to getting the implant--I didn't want to lose whatever real residual hearing I had left, because no matter how great the CI, it's never as good as natural hearing. 

So, that's what the implant looks like, and that's how it works. You can see the difference between a traditional hearing aid and a CI in quality--one just amplifies sound, the other helps you understand it. It also has several different channels for music, loud situations, etc. I can plug my iPod into it (There's a special adapter cord. It sort of rocks my world.). 

A CI is great--but it's only as great as you make it. You have to train yourself to set the sensitivity (how much the mic picks up incidentially) and the program that's best for you. When I first got it, I went back to my audiologist at different intervals to have the electrode settings adjusted. Now I have a program that is usually used for music, but I use it all the time, because I get a richer sound.  You will do better if you experiment with programs and tell your audiologist what you are hearing, and what you'd LIKE to be hearing. And the younger you are, and the more "verbal" you were before, the better. I was a musician before--I'm a musician after. My ears were SO important to me. And now, I work hard at bringing myself up to "normal" standards. I've found the CI pitches me sharp, which is very rare in the vocal world--most people are flat, if they're having pitch problems. I have to listen even more carefully than the average singer. Instrumental music I've never heard before is very difficult for me--it just sounds like noise at first. Vocal music isn't so hard, but I have a hard time discerning words if I don't have liner notes to work with as well. (So people--give me liner notes!) 

CIs are also somewhat better on the phone, because the CI mic is directed at the phone. I have a special program (called telecoil) that I use when I'm on the phone. I have to push a button to activate it, so that's why it takes me slightly longer to pick up! My cell phone is compatible with both hearing aids AND CIs--not all are. The same is true for landlines. My phone at work has a special component that helps with the sound quality. 

I do not have bilaterial CIs.  My right ear has about 20% natural hearing, and I'm glad it does, so that when my CI battery goes dead, or it's out when I'm in the pool, shower, or sleeping, I can still hear things, and discern some voices. I can sleep with the CI in, but you DO need to charge the battery every so often! They are good for about 18 hours at a go. I have two. There is a fifteen minute warning "beep" that tells you to change the battery before it goes dead. 

So this is probably more than you ever wanted to know about hearing aids and CIs, but I think it's an important thing to cover. CIs are becoming more common, and people need to know how they work. 

I DO know ASL, but that was a complete fluke--I added it as an elective in high school for two years. I'm fairly good at signing, and will use it when I have to. My little sister also took an ASL course, and my ENT knows some sign. So also take ASL courses, if you can! It's so useful. 

If you have any additional questions, post them in the com box and I'll answer them (If I can). 

Death and Taxes

I don’t normally watch the evening news. I’m around news all day, I read news websites, and by 6:30 I can probably give you a detailed summary of all the major events of the day with my eyes closed.


But, I was watching CBS evening news the other night (I was waiting for Jeopardy!), and there was a segment on obesity. The normal ideas were trotted out: more gym classes, taxes on “junk food”, all healthy foods in the cafeteria, etc.


I have several problems with this, not just because I like my Diet Coke, but because I needed that “junk” food when I was in high school. I needed as many calories as I could stuff into my body, because CF patients are extremely malnourished. Sure, we can wear a 00, but we can also look like African refugees. Not a good look. Coke machines, and the candy sold in the school store, helped my weight more than any apple or orange would have. The emphasis wasn’t so much on health food as food that will make me bigger.


Now I realize that CF kids are in the minority. But what about diabetics, who drink Diet Coke instead of juice? Most juices are packed with sugar. I don’t drink juice anymore unless I absolutely have to—as in, it’s the only choice at a hotel breakfast buffet. I’d much rather have coffee, milk, tea, or diet soda. Fruits send blood sugar levels sky-high. So what’s often considered “junk food” can be necessary food for a lot of people.


So, I think increasing these taxes, or banning these foods in schools, is an awful idea for a lot of the population. If you don’t want your kids to eat it, don’t give them pocket money. If they have pocket money in high school, from a job or whatever, they can make their own decisions. If theychoose junk food, that’s their choice. It doesn’t affect anyone but them.


The CBS story also likened taxing junk food to taxing cigarettes. Of course, the big difference is that cigarette smoke harms other people directly. I love taxes on cigarettes. My favorite cigarette tax story is from Cleveland—there, they use the money to fund arts programs. (We’ll forget about the fact that a lot of artists—including, lamentably, singers—smoke. At least they’re funding their own jobs.) But if you decide to eat a Big Mac every day for the rest of your life, that doesn’t directly affect me.


The argument can be made that it will affect me, indirectly, in rising health care costs. But everything we do can, indirectly, affect others. For example, I don’t think there should be seatbelt laws requiring adults to wear seatbelts. If you’re 18 or 25 or 62, and you decide that you don’t want to wear one, you can face the consequences of those actions. But that’s your choice. Part of living in a free society is the ability to make these choices.


My friend Richelle wrote a post about a Senate proposal that would tax indoor tanning. Now, while I think that indoor tanning—really, any tanning where the purpose is to turn yourself the color of a rotisserie chicken—is ridiculous (because, yeah, we need more cancer-causing agents in our lives), especially in Ohio in February, I don’t think the tax would serve as a deterrent. As my friend Candi noted, tanning is relatively cheap—packages can be bought for around $20. A 10% tax on $20 isn’t a very large deterrent. And, again, it’s a personal choice—one that I happen to think is inane, but hey, if you want skin cancer, that’s your call.


I draw the line here—things like cigarettes, that affect other people, should be taxed, banned, whatever. If you want to smoke at home, or in a smoking room (a la Titanic, or a British men’s club), sure, go ahead. But I (especially I) do not need, or want, to breathe in your toxic smoke. Sorry. So government can tax the hell out of it.


Tanning, junk food, etc.: These are personal choices. They do not affect me or other people. You are not clogging my arteries by eating those pounds of Doritos. And, like I stated above, some people need high-calorie, high-fat foods. Some people need diet drinks. I know of no people who need cigarettes for better health.




(NOTE: I’m tacking this one at the end in case I get some readers who aren’t regulars. Abortion is not a personal choice. You are directly killing another human being. Case closed.)

1001 Things

(stole this from Jane...well, most of it. Some ideas are mine, and I've eliminated things that don't apply to me at all. Like med school :)) Red are things I've done

January 1, 2010 – September 28, 2012

 1. Run a 5K (I've walked one) 

2. Run a 10K

 3. Run a ½ marathon 

4. Run a full marathon 

5. Lose 30 pounds 

6. Once a week, jot a note about something that makes me happy

 7. Leave a postcard inside a PS book

 8. Find a church I love 

9. Attend church 100 times 

10. Be credit card debt free 

11. Read the bible cover to cover (in the process...)

12. Grow fresh vegetables in my yard

 13. Fall hopelessly in love 

14. Donate 100 hours to charity each year

 15. Use my passport at least once 

16. Refresh my French to conversational ability 

17. Take a self defense class 

 20. Organize iTunes 

21. Organize old photos and get everything digitized 

22. Visit 6 new states 

23. Cut down a Christmas tree 

24. Cook a complete meal once a month 

25. Snail mail one card a week to various people

27. Clean out and organize garage 

28. Maintain garden 

29. Tip a server 100% 

 31. Find a mentor and work with him/her

 32. Get all A’s  (1st semester,sophomore year of college)

33. Ride in a hot air balloon

 35. Make bread from scratch

 37. Try yoga 

39. Watch 26 movies that each start with a different letter, A-Z that I have never seen before (this is way cool)

 40. Take 6 weekend trips to places I have never been before

45. Take a dance class 

48. Donate blood (can't, as we know my veins are AWFUL)

49. Build a headboard 

50. Purchase furniture I like

 51. Hang paintings I like  

53. Find out if I’m a CF carrier  (yes, I am. :-D)

54. End 1001 days with every article of clothing in my closet and drawers actually fitting

 55. Sleep under the stars 

56. Find out my blood type 

58. Pay for a random table’s meal 3x 

60. Go to Oktoberfest 

61. Vote in all major elections  (it's part of my job!)

62. Volunteer for a political campaign (again, part of my job)

63. Spa day – mani, pedi, facial, massage, blowout 

64. Go on a picnic

 65. Build a snowman 

66. Kiss in the rain (well, OK, snow)

68. Eat raw food only for 2 weeks

 69. Try rockclimbing 

70. Kiss under mistletoe

72. Develop relationship with all professors 

 74. Visit San Francisco 

75. Visit Virginia Beach

 76. Kiss someone I care about at midnight on New Year’s Eve 

77. Maintain blog as history of my life 

78. Finish thinking of 101 things I want to do...

And here are my additions:

79. Read all of Edith Wharton

80. GET my passport

81. Go to Europe

82. Finish my MA

Seven Quick Takes Friday Vol. XVII

I.

It's audition time again; this time for The Music Man. Singing "Storybook", per usual. Auditions are tomorrow at 5:00. Not sure how long I'll be there, but we have to be prepared to dance,  which always strikes fear into my heart.

II.

On Sunday I'm doing a LOOP talk with a friend of my family's, whose infant son was an organ donor (He was part of a domino transplant at Children's). The talk is at her church at 9:00, so a bit early for me. But it's for a good cause. Sunday is also the CFF's bowl-a-thon around here.

III.

Voice lessons going very well. I'm working on so many pieces right now, plus I'm singing in a production of "Messiah", which is in late December. It's just the Christmas section, and I've sung 95% of the choruses before. Vocally, I'm in good shape here.

IV.

My grandpa came home from the hospital yesterday--yay!

V.

I'm also preparing for summer auditions (yes, already). Today I received the 1994 cast recording of Oliver! plus the 1968 movie. I would love to sing Nancy, so I want to prepare really well for this audition. I'm working on "As Long As He Needs Me" in voice, so I should have that ready by May.

VI.

Books: I'm on a Thomas More kick. I read "A Daughter's Love" last week and now I have "The King's Good Servant, but God's First", which came with the Oliver! stuff today (oh Amazon, how I love thee).

VII.

It is almost 70 degrees here. In mid-November. I'll take that.

The Simple Woman's Daybook--November 9, 2009

Outside My Window ...

It's dark now, but it was a beautiful late fall day--highs in the 60s, and a pale blue sky. Fantastic.

***

I am listening to...

Handel's "Messiah" (Christmas section)

***

To Live the Liturgy...

Magnificat, Rosary, and Signs of Life, Scott Hahn's new book.

***

To Fit and Happy...

Gym and ballet this week. I get Wednesday off, so there is no reason gym and/or ballet should not happen.

***

I am thankful for...

short weeks!

***

I am pondering ...

tomorrow's Target list.

***

From the kitchen ...

Not sure. Lots of pasta/soup this week, I think. Maybe some meat sauce making on W.

I am wearing ...

Pitt sweatpants, a J.Jill camisole (heading to bed soon)

***

I am creating ...

music

***

On my iPod...

more "Messiah" and voice lesson music.

***

I am thinking...

that I can't wait for Wednesday

***

Around the House

Cleaning which =getting stuff off the floor!

.***

I am reading ...

See above; also The Looking Glass, and Catherine of Sienna. Also read: A Daughter's Love: Thomas More and His Dearest Meg yesterday. Soooo good.  (Of course this ALSO led to watching A Man for All Seasons, which is NEVER a bad thing.)

***

I am hoping and praying ...

for my grandpa.

***

On Keeping Home ...

Getting ready for the holidays--card writing, cleaning, etc., etc.

***

One of my favorite things ...

singing with talented people

***

A Few Plans For The Rest Of The Week:

T: Pampered Chef Party!

W: Voice at 2:00, gym/ballet, DAY OFF!

Th: CF clinic @ 3:30

Sat: Music Man auditions!

Sunday: Messiah rehearsal; Faith Sharing group

A picture thought I am sharing:

Corner of State and Third Street, Downtown Columbus, Fall (it was taken this year, ignore the '07 thing)

How much do I love these guys?

Yet another reason to love Pittsburgh--CF fundraising! Woot!

Health care stuff

Read this

And the check out the 'health care' and 'CF' links on the sidebar, for more.

Health care, etc.

First, a "Duh" link: certain drugs can cause hearing loss!

Yeah, could've found this out by talking to my ENT. Sheesh.

And two SOHC links:

Congratulations, it's a ...cross-border incident! [Mark Steyn]

Somewhere in America Alone, I cite an example of the logical reductio of socialized health care: "the ten-month wait for the maternity ward". I've been adding to the file ever since. Here's the latest entry, from Hamilton, Ontario:

Hamilton's neonatal intensive care unit (NICU) was full when Ava Isabella Stinson was born 14 weeks premature at St. Joseph's Hospital Thursday at 12:24 p.m.

A provincewide search for an open NICU bed came up empty, leaving no choice but to send the two-pound, four-ounce preemie to Buffalo that evening.

Well, it would be unreasonable to expect Hamilton, a city of half-a-million people just down the road from Canada's largest city (Greater Toronto Area, five-and-a-half million) in the most densely populated part of Canada's most populous province (Ontario, 13 million people) to be able to offer the same level of neonatal care as Buffalo, a post-industrial ruin in steep population decline for half-a-century.

But wait! The fun and games are only just beginning. When a decrepit and incompetent Canadian health bureaucracy meets a boneheaded and inhuman American border "security" bureaucracy, you'll be getting a birth experience you'll treasure forever:

Her parents, Natalie Paquette and Richard Stinson, couldn't follow their baby because as of June 1, a passport is required to cross the border into the United States. They're having to approve medical procedures over the phone and are terrified something will happen to their baby before they get there.

Once Buffalo enjoys the benefits of Hamilton-level health care, I wonder where Ontario will be shipping the preemies to. Costa Rica?

And two:

e my post below on the Hamilton (Ontario) newborn currently in a Buffalo (New York) hospital, a reader from Pennsburg, Pa writes:

ROFLMAO!!
You guys are hysterical....bitching about Hamilton and Buffalo.
I've got a friend who's a cop near Pittsburgh. He hasn't seen a doctor in 30 years. The last physical he got was from me when I was in nursing school.

How's THAT for health care? I bet your ass you don't put THAT in your little NRO rag.

Hmm. I'd be interested to know which police department he works for. Presumably not Pittsburgh, where the Fraternal Order of Police was founded. But even small municipal departments offer health benefits such that, if an officer goes three decades without seeing a doctor, it's his choice.

Meanwhile, just to keep you ROFLYAO a bit longer, here's a story from one of Quebec's most prestigious hospitals:

A woman admitted to Montreal's Royal Victoria Hospital for an induced birth was forced into a do-it-yourself delivery last month, with only her non-medically trained common-law partner to assist...

At about 5 a.m. on May 13, medical help failed to appear even after Karine Lachapelle's water broke.

Despite attempts to summon help by partner Mark Schouls, who was pushing a nurse-alert button with increasing frequency as Lachapelle's contractions became more intense, the two delivered their new son, Kristophe, entirely on their own.

Lachapelle pushed the child out past his shoulders and face down, allowing Schouls to get a grip and pull the newborn the rest of the way out, he recounted.

There were no complications, and Kristophe was crying loudly within seconds...

Nobody on hospital staff will face disciplinary action, Kalina said.

"Both nurses were hard at work" in the pre-natal waiting area where Lachapelle had been placed. She was sharing a room with two other women with at-risk pregnancies.

"Both" nurses? Don't worry, that's for the Maternity wing, not the entire hospital.

My Family Onscreen

If you want to know what life in my family was like, pre-tx, go see "My Sister's Keeper", which just opened in theaters today.

I'm not going to rehash the entire plot, only to say this--Anna Fitzgerald was concieved as a genetic match for her sister, Kate, who has leukemia. Since the time she was born, she has been donating cells, blood, and marrow to save her sister's life. Now her sister is in renal failure, and needs the biggest sacrifice of all--Anna's kidney.

Anna talks about how life can change in an instant. One night, we see the family joking at dinner. The next, Kate is sick and being tended to by paramedics as she vomits blood on the bedroom floor. This reminded me of a time I went into the hospital, and I was lying on the couch while my parents talked to the doctors, wrapped in my mom's winter coat and all the blankets we could find. I was so cold. My brother and sister just sat in the family room and looked at me, while my parents tried to figure out what to do.

Kate's father, Brian, has some mannerisms my own father has, or does things he's done. Sleeping at Kate's bedside, and touching his nose when he wants a kiss (my dad touches his cheek). As he watches her go to prom with her boyfriend, there are tears in his eyes. I don't think my dad cried when I went to prom, but that's neither here nor there. I could understand the expression of a father watching his child do something he didn't think she'd get to do.

Anna helps take care of Kate. There's a sharps box in the girls' bathroom. Bryan and Mel learned how to mix my IV meds, and to flush my lines and my port. Mel could probably even access it, if she had to. She will be able to when she's done with nursing school. During one scene, Kate looks so embarrassed as Anna wipes blood off her face and changes a towel underneath her. Anna does it so matter-of-factly, just like my own siblings have done. But that doesn't mean I felt any better about it.

When Kate needs a prom dress, she needs one that covers her port-a-cath, which is currently accessed. Her boyfriend strokes her back and holds the emesis basin so she can vomit during her chemo treatments.

This family is my family. Sure, things are different. The situations, for one. But the dynamic, that's so similar. Kate feels bad because she takes so much time away from her siblings. Her siblings want to help her but don't know how. Kate wants to stop being a burden to them.

People in the theater were just bawling. The only time I cried was near the end, when Kate and her mother, Sara, are alone in Kate's hospital room. Kate looks at her mother and says, "It was a good one, wasn't it?"

"The best," Sara answers.

That's what I would say. It has been a good one. The best.

The voices of CF

a special at the NYT. Good stuff. 

grammar pickiness

OK cats and kittens....

A note: CF is NOT capitalized. Don't ask me why, it's just not. 

So if you're writing it "Cystic Fibrosis", you are spelling it wrong. Just like you wouldn't capitalize "cancer" or "leukemia", you don't capitalize "cystic fibrosis."

 

(We now return to regularly scheduled programming.) 

The time has come

to get serious. 

Really, really serious. 

See, I made a deal with god today. (No, not that one. Dr. god. Hence the lowercase 'g')

It was my three-month check in with them--they have a special post-tx CF clinic for all of us. The last time I went was the same day as Parade's final tech rehearsal. (That was a long day) 

Anyway, today it was just me and god. We did the normal things--the rundown of the meds, checking to see if there were any complaints, basic exam, etc. Nothing too important. 

Then we had a Chat (and made a deal). 

See, before transplant, I weighed like nothing. (Check the photos in the May 06 archive if you don't believe me). Really, we're talking nothing. I couldn't wear size 0 clothes. It was bad. 

Now...let's just say we don't have that problem. 

Before t/x, exercise was supposed to happen, but, as things got worse, just existing was hard, so no exercise. And the exercise gene, in general, skipped me. My brother ran Boston in 2 hours in 54 minutes. Me? No. Running is a four-letter word to me. As Mia says in The Princess Diaries, "I'm a yoga girl." 

Well...now I have to be more than a yoga girl, apparently. As you know from some previous posts, I have been trying to work on this. Now I have to work harder. 

God wants exercise 5 days a week, at least 30 minutes at a time. 

My initial reaction? Four letter words. That I didn't say. 

Now I basically listen to everything she tells me to do, because she's god. But I really am not an exercise girl. I'm just...NOT. 

But I have agreed to become one. I see Dr. A in the t/x clinic on June 23, and I imagine Dr. god would take a peek at my chart on that date. So. 

We're going to make it happen. I think. Well, OK, it has to happen. I made a promise. 

• So--BalletMet summer session starts early in June. I can do that. 
  
• I have new workout shorts on the way (I didn't have any that weren't like a size -1), so I can work out in the incredibly hot apartment clubhouse gym and not die. 
  
• I am downloading the rest of my CDs onto my iPod, so I will have a gym-worthy playlist. 
  

Accountability can be here, via the blog. 

Hope y'all are ready for some fun reading. At least all you have to do is read it!

The Simple Woman's Daybook--May 25, 2009

For Monday, May 25,2009

Outside my window...
It's almost dark, but it was a very pretty day. HOT though, about 86. 

I am thinking...
That it was a great weekend. Do I have to go back to work? (answer: Yes)

I am thankful for...
My family, days off

From the kitchen...
I finished brioche today. 

To live the liturgy...
Magnificat, Bible reading, rosary, St. Francis prayer book 

I am wearing...

>A raspberry colored tank top, and shorts

I am creating...
A new short story

I am going to breathe deeply ...
And relax--work will be fine!

Bringing beauty to my home ...
the house is clean!

I am going...

to take my pills, have a snack and go to bed. 

I am reading...

Sense and Sensibility, David Copperfield

I am hoping...
For a good, sane week. 

I am hearing...
The Star Trek soundtrack (n the car)

One of my favorite things...
Jane's books :) 

A Few Plans For The Rest Of The Week:
Classes in general...

W: Volunteering at LOOP

Th: Post-tx CF clinic

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.

CF folks in Ireland, part II

More on the wonders of Universal Health Care!
A salient point: (emphases mine)

Cystic fibrosis sufferers again left in the queue
Sunday, April 05, 2009 By Aileen O’Meara
Last week began with another row in the health services which had a familiar theme: should the private sector provide public health services?

This row centred on the issue of long-awaited and necessary facilities for people with cystic fibrosis (CF). The cash-strapped Health Service Executive (HSE) confirmed that it would not have the resources until 2011 ‘‘at the earliest’’ to build the promised special unit for CF sufferers at St Vincent’s Hospital in Dublin.

This is a year later than promised after an intense media campaign in January last year, when CF sufferers - led by Orla Tinsley - highlighted the scandalous conditions for cystic fibrosis sufferers in hospitals which lack isolated single rooms to prevent suffers picking up infections. (you must, must, must have single rooms for CF suffers. Without it, you are just compounding the problem. CF patients can spread a bacteria called b.cepacia, that is highly dangerous and only dangerous to the CF population. That's why CF kids can't play together anymore, or have camps, without wearing masks and being in a large space. The fact that they do not have this most basic resource is absolutely appalling.) That campaign led to the promise of a 30-bed unit in a new 120-bed hospital in the grounds of St Vincent’s. (Here at Children's, we have entire CF floors. And not only that, the new hospital will have only private rooms.)

Replying to complaints, health minister Mary Harney told journalists last week that the state would have to look at the possibility of private sector investment to build the unit.

Her pragmatic response was criticised from the Labour Party and Sinn Féin, in particular, on the funding issue. ‘‘The public health service is not the responsibility of the private sector. If minister Harney insists on peddling this defunct PD ideology at the expense of people’s lives, then she should go,” said Jan O’Sullivan of Labour. Wait, EXCUSE ME? You are the ones who are pushing ideology at the expense of lives! Sheesh! CF patients need private rooms. it's not a vanity thing. It's necessary.

Sinn Féin’s Caoimhghín O’ Caoláin said the minister’s suggestion ‘‘added insult to injury’’, adding that this was ‘‘a recipe for further delay’’, and was the minister’s knee-jerk response to every problem in the health service.

The row about the CF unit in St Vincent’s encapsulates many of the elements of the dilemma facing the government, the Department of Health and the HSE, with the abrupt end to the economic boom.

OK so here's the deal--Children's can expand to meet its needs, like, oh, setting up a lung transplant program-- because the private sector can donate funding. It's now called "Nationwide Children's Hospital" because the insurance giant donated millions of dollars to the hospital. Every year, Children's has a telethon to raise money for the hospital (I was a part of it in 2006). They take donations of money, toys, books, etc. for patients and their families. Local companies donate hundreds of thousands--sometimes even millions of dollars--to the hospital. This enable them to provide top-notch care and save thousands of lives.

In the hallway linking the outpatient care unit and the education building, there are many plaques listing the names of donors, in amounts ranging from $500,000+ to $1,000. Some of these are families, individuals, small businesses, and huge corporations.

Yes, the hospital also gets money from the state, and just received federal stimulus money. But the hospital would, in no way, shape or form, be able to provide the care it does WITHOUT private donors.

Lovely.

Masters of Dark Arts cast a bitter spell

We can fix this country if we insist on fairness, logic and an equality of opportunity for all, writes Gene Kerrigan

By Gene Kerrigan

Sunday April 05 2009

The market is back for what used to be called "white mince". It was a staple food for a lot of people in the bad old days of the 1980s.

It's not really white, more like pale pink. The mince on the top shelf of my local supermarket is the "healthy option", guaranteed not more than five per cent fat. On the bottom shelf, the low-priced "white mince" is guaranteed not more than 28 per cent fat.

For those who can't afford even that, there are the food queues. All across the country, people struggle desperately to hang onto their jobs, their homes, their lives. Next Tuesday, having already decided to deprive Cystic Fibrosis patients of life-prolonging treatment units, the Government will announce new ways to help us "share the pain".

Meanwhile, one banker turned down a top job because it pays a mere €360,000. He knows he won't go short -- there are lots of high-paying positions at certain levels. And RTE announces that bank bosses want to "renegotiate" the cap on salaries -- they're upset that the top money is €690,000, the poor darlings.

There's a pretence that certain people are worth big money, because they alone are Masters of the Dark Arts of Finance -- they include bankers, brokers, consultants and economists. It doesn't matter that bankers and their wealthy clients and their favourite politicians engineered the meltdown of the economy. Despite their record, they remain Masters of the Dark Arts. In devising strategies for fixing the economy, the Government listens to them.

How good are they? The Master we've picked is not a banker, but one of those celebrity economists who never stops publicly demanding this or that measure. Jim Power, Chief Economist with Friends First. Let's look at his record.

Jim was once worried by the credit bubble. In 2004, he described bank practices as "nutty". He warned, "When things go wrong they go very wrong". In March 2006, he warned that "a significant correction to house prices would . . . undermine the overall economy". Which is what happened.

"An economy cannot grow on the basis of the public sector and the housing market indefinitely," Jim said.

He called on policy makers to "focus on nurturing an indigenous and sustainable economic base".

This was sensible. Jim is a smart guy.

By February 2007 he was more optimistic. "Nothing in the overall data" suggested a hard landing. At a round-table discussion he suggested that the Regulator might take "a more flexible approach to stress testing" for loans. Odd advice, given that the regulator was not so much flexible as limp as a wet noodle.

The following month Jim was sure there was no bubble. "The market looks set to remain solidly based. Beyond 2007, house price inflation should settle down to levels broadly consistent with general inflation out to the end of the decade."

A "soft landing" was in sight. "The fundamental demand in the marketplace is still strong and is not about to disappear,'' he said in April 2007, as the fundamental demand was about to disappear.

It was about the time of Richard Curran's TV programme warning of economic dangers. "There is currently an inordinate amount of negativity permeating Irish economic debate," Master Jim told the Heineken Ireland Open Forum, in Cork.

A report said he warned against the "merchants of doom" who were risking the country's future prospects. Merchants of doom, huh? Remember that phrase.

In January 2008, "After more than a decade of uninterrupted growth, the Irish housing market finally came a cropper in 2007". Another four months and Jim mused that, "2008 is certainly turning out to be a challenging year".

Back in June 2007 he knew that a slowdown "should not be of sufficient scale to seriously undermine the overall economy". By November 2008: "I reckon the majority of first-time buyers who bought into the market over the last three years are in negative equity". (These, of course, would be the people who ignored the "merchants of doom".)

By January 2009 Master Jim was denouncing those who demanded we all "talk up the economy". He complained: "One is now fearful about saying anything negative in case one gets vilified or accused of being a . . ."

And here the average Soapbox reader surely knows what's coming. ". . . merchant of doom". Master Jim, in short, was worried about being denounced by . . . well, presumably by Master Jim.

The government, Jim complained, "only took advice from people who told them what they wanted to hear and they never listened to anyone who was criticising them".

To which we can only say, Duh.

We must emphasise that there's nothing spectacularly unique about Master Jim. He is representative of that whole class of Masters of the Dark Arts who spent most of the past decade talking through their arses.

In fact, Master Jim at least spotted the dangers, around 2004 -- which many of them never did.

Today, it's the Masters of the Dark Arts who are directing the debate on the emergency Budget, on the solution to the banking crisis, and on how we should "share the pain".

Like the rest, Master Jim is all for "wage restraint, major cuts in public spending . . . a proper financial regulatory framework". (One, perhaps, that's not so "flexible".)

Last week the Irish Times reported that he wants the Government to consider a cut in the minimum wage, because it's a "major source of lack of competitiveness".

This is the same Master of the Dark Arts who last July rejected a cut in the minimum wage, as scraping the bottom of the barrel.

This country is broken. If and when and how it gets fixed will determine how we live and how many are forced to leave the country. It will determine how many of us will die prematurely on hospital waiting lists.

The hills are alive with media airheads insisting that we not "point the finger" or "play the blame game", that we must listen to the Masters of the Dark Arts as they prescribe the amount of pain we all must bear.

The vast majority of us didn't gamble and didn't party or borrow more than we could afford. The vast majority of us worked and paid our taxes conscientiously.

Now, the Government has drawn up measures that will shred our lives -- this in a country where there are Masters of the Dark Arts who turn down jobs because €360,000 isn't enough, where €700,000 is deprivation.

The Government is struggling. They see their job not as looking at the broken pieces and putting them together in the most logical way. For instance, nationalise the major banks, throw out the clowns who run them, let outfits like Anglo die.

Instead, they seek to restore things exactly as they were -- to maintain the old relationships, the status of the Great Ones. And, above all, to maintain the ratio of earnings between the Great Ones and the rest of us. To do otherwise is to breach a sacred tenet of the Dark Arts.

We can fix this country, if we insist on equality of opportunity, equality of democracy, if we insist on fairness and logic. If we stop genuflecting to the semi-religious economic prescriptions put out by people whose record doesn't -- to say the least -- inspire confidence.

And, the next media airhead who tells me that we must all "share the pain", that some must go jobless and hungry while others continue their obscene spending, is going to get their face rubbed in a plate of white mince.

- Gene Kerrigan

So, yeah, all our health care problems will be solved if--when!--we go to government health care.

Right.