Monday, May 31, 2010

Rock Star Lifestyle ... or Outfit

One of the only perks about being out of work right now (other than that I keep getting better and preparing for my transplant, ahem . . . ) is that I can feel the little voice in my/your/one's mind that says, "Am I dressed conservatively enough for work?" "Does this outfit look professional?" or "Do I need to add a sweater to this?" slowly dying away. I am using this time of my life to embrace the rock and roll fashions that I have always admired.

(But, you know, don't have crazy expectations)

Sunday, May 30, 2010

My Montage 5/30/10 at

Nifty Advertisement for Nifty CF T-Shirts


Saturday, May 29, 2010

On Natalia's Journey of a Lifetime

Recently, I was reading this post by the famous Natalia, from Canada, who prepared for and received her lung transplant while awaiting the birth of her daughter via surrogate. She hasn't written in a few months and thought that perhaps she would give up her blog altogether. Here is her posting:

regarding her feelings after transplant. In this post, she articulates a lot of the fears and anxieties that I have about the post-transplant experience. With the wonderful health and exuberant joy of breathing and living, comes a huge psychological shift that is hard to explain- but she does it very well.

Here is the response I wrote to her:

Friday, May 28, 2010

Cliff, Put Down That Hoagie!

You might be wondering, right about now - What does CG have to do with HH (Dr. Heathcliff Huxtible)? Well, I'll tell you. "Cliff," as we all know him, from The Cosby Show, had high blood pressure. His wife Claire, played by Phylicia Rashad (sp?), was the mighty police woman of all activities related to keeping his blood pressure down.

Poor HH was forced by Claire to avoid the following activities because of his high bp:

1) Eating Hoagies (as seen above)
2) Competing in his college alumni basketball game
3) Dealing with his daughter Sandra's husband, Eldon
4) Seeing his daughter, Vanessa, practice her "dance routine" with her "dance group" in their outfits *no image available.
5) Playing a rousing game of plattonk with his out-of-town friend.
6) Watching horror movies on halloween with his daughter, Rudy.
7) Watching cowboy movies where people get shot a lot.

Now, realizing that I don't really like hoagies and actually, salt is not a factor in my bp, considering the salt problems we CFers have, (Dr. U has asked me like a million times, "So you don't crave salt?!" and I'm like, "No! I'm sorry! Jeebers.")--I digress. So, I don't like hoagies, I don't play basketball, I don't have a daughter with a mysoginist husband or another daughter who dances to "the locomotion" in spandex, and I don't even know what country plattonk is from though I must say it looks like a mix of botchi ball and bowling, and because I am ascared of horror movies and bored by most cowboy movies ... you would think I would have no problem keeping my bp down.

But alas no!

The problem with my bp is not so much it, as that I when my bp is up, I get hemoptysis. Or perhaps vice versa. We will never know. The following things make my bp go up and I must avoid them at all costs:

1) Talking on the phone with [undisclosed party who can suck it.]
2) Pure cardio without proper warm up.
3) Cleaning my house (true, also a valid excuse for not keeping the place shiny and super)
4) Going to the doctor (this remains a conflict of interest and there is always a great bp debate when bp is at the doctor)
5) Talking to much about money, insurance, politics, the past, the future, or the present. :)

So, you know, I really have to avoid a lot of topics.

Actually, in all seriousness, I am realizing that seeking the no-stress lifestyle is a full time job, requires much sleeping late, exercise (gentle exercise), much eating, napping, laughing, music, carefully planned companionship, and a supportive group of family and friends. Thank goodness I have all these things I need! I am very blessed.

On that note, I leave you this bit of comedy, and two important links:



Thursday, May 27, 2010


Now accepting orders for Cystic Gal and Guy T-Shirts!

Price is dependent on orders received, but will be about

Click HERE for the Order Form

UPDATE! Orders are flying for the shirts with NO TEXT on the front- so those are the ones I'm making!!

In pink ladies' cut and gray regular t-shirt cut.

* Gal shirts are in ladies' sizes and cut to fit ladies well :)

**Guy shirts (all gray shirts) are in men's sizes, standard t-shirt cut.

HERE to order!

(no payment required until t's are ready to ship)

Wednesday, May 26, 2010

More Famouser

I just got the famous tweet! Famous tweets to date:

Leann Rimes
Simon VanKampen
Alex McCord (that makes an official Silex tweet)
Suze Orman.

I'm more famous every day.

Yesterday, photo shoot with the amazing photog. Beth Rooney

Upcoming hopeful stuff: article for the CF NewsWire, article maybe for Daily Southtown, interview maybe with NPR, interview maybe on transition (adolescent to adult) in CF.

Book your time fast, America!

More newsie and informative posts latah, playah. And yes, I am out of "jail" (the hospital).

Almost time for my bipap nap. How time flies when you need a nap!

Remind me to tell you about my new obsession with french toast, and how I actually ate 2 full orders of french toast (10 pieces of fr t) last week. This reaffirms my belief that the only way for me to gain weight is blatant binge eating as such. And with 12 pounds on in 2 months, it seems, I am correct!

ok bai.

Monday, May 24, 2010

Machine helps those waiting for new lungs‎ | | Seattle Health News, HealhtLink  
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I have talked about ECMO on the blog before - it is an end-stage measure they use to help patients make it to transplant if they're call doesn't come and they're in respiratory failure. I hope I don't ever have to use ECMO, but I'm glad that it exists and that one of my centers feels comfortable using it, and discussed it with me.

  Click the following to access the sent link:
Machine helps those waiting for new lungs? | | Seattle Health News, HealhtLink*
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  *This article can also be accessed if you copy and paste the entire address below into your web browser.

Here is What with 32,000 Unique Visitors!

First, the news. Yes, I am back in the hospital and yes, it's because my lungs are bleeding again. We're dealing with it. Gripes: I was supposed to spend much of the weekend with famed author and hometown homie Kathleen Rooney. I did get to see her reading at Brookline Booksmithe, but then it was ruined as I walked to dinner and had to duck into my car to cough blood into a plastic bag. Quelle Horreurre! (fr sp?)

But, now in the big house.

I have been quite lax on updating the StatCounter stats for you folks. So here goes!
This image is less than ideal, but, to the right is 2010, and the left is 2009. So, overall, I have about 32,00o Unique IP Addresses tuning in. Only about half of them, 15,000, return regularly. Still, that's pretty great odds. The blog isn't for everyone!

I have between 200 and 300 readers each day:

DayDatePage LoadsUnique VisitorsFirst Time VisitorsReturning Visitors
Sunday May 23rd 2010 273 200 137 63
Saturday May 22nd 2010 357 185 95 90
Friday May 21st 2010 453 212 89 123
Thursday May 20th 2010 451 214 94 120
Wednesday May 19th 2010 524 232 100 132
Tuesday May 18th 2010 492 249 96 153
Monday May 17th 2010 388 266 139 127
The high for daily readers is 400, but I hope to write a really great post and get a 500 Unique Readers Day soon! This amounts to about 1500 Unique Readers per week, and an ever-growing number of Unique Readers per month:

MonthPage LoadsUnique VisitorsFirst Time VisitorsReturning Visitors
May 2010 8,126 4,559 2,124 2,435
Apr 2010 10,341 5,859 2,811 3,048
Mar 2010 7,722 4,547 2,287 2,260
Feb 2010 5,520 2,859 1,351 1,508
Jan 2010 6,672 3,298 1,710 1,588

These are the most popular pages (other than recent ones):
Cystic Gal: Can we pretend that airplanes In the night sky are like shooting stars?
Cystic Gal: 2nd UPDATE TO "About CG the Blog and CG the Person: A special post for the many new readers!"
Cystic Gal: Florence Nightingale Syndrome: What Can IT do for YOU?
Cystic Gal: Crazy-Ass Disclaimer Section
Cystic Gal: independence
Cystic Gal: Cleveland Clinic Rocked
Cystic Gal: Thoughts I Wanna Get Down Before I Forget Em:
Cystic Gal: Guest Blog by CysticLady: Update on CysticGal III
Cystic Gal: Ten Things I Don't Want During My Transplant Journey

These are the most important keyword searches other than "cystic gal" that led readers to my blog. Oddly, Florence Nightingale Syndrome is still a big draw to the CG. Also, apparently, are people looking for Journey lyrics because of my addiction to naming post titles after 70s songs. I enjoy that this list also has the phrase "faux boyfriends." I did not realize how often I must type that phrase that it led readers to the blog.

airplanes in the night sky poem
10 bullet points about florence nightingale
cg girl pic
david wallace suck it sweatshirt
poems about getting back in the saddle
i dont want to remember the we use to do, journey
florence nightingale syndrome

International Readers: Here are the countries recently represented on the blog:
90.40%United States
drill down4.00%CanadaCanada
drill down1.60%ItalyItaly
drill down0.80%United KingdomUnited Kingdom
drill down0.80%NetherlandsNetherlands
drill down0.80%PhilippinesPhilippines
drill down0.40%AustraliaAustralia
drill down0.40%Costa RicaCosta Rica
drill down0.40%SpainSpain
drill down0.40%HungaryHungary

Here are some of the medical readers:

ISP City Region Country Name
1.60%Longwood Medical And Academic Area (lma)BostonMassachusettsUnited StatesUnited States
0.80%Calgary Regional Health AuthorityCalgaryAlbertaCanadaCanada
0.40%Intermountain Health CareSalt Lake CityUtahUnited StatesUnited States
0.40%Cleveland Clinic FoundationClevelandOhioUnited StatesUnited States
0.40%Mercy Health SystemPhiladelphiaPennsylvaniaUnited StatesUnited States
0.40%Columbus-colony-elderly-care-3rd-block-of-only-2-aColumbusOhioUnited StatesUnited States
0.40%University Of ChicagoChicagoIllinoisUnited StatesUnited States
0.40%Banner HealthGlendaleArizonaUnited StatesUnited States
0.40%Medical University Of South CarolinaCharlestonSouth CarolinaUnited StatesUnited States

Cool! Thanks for reading, everybody!!

Sunday, May 23, 2010

dream about swimmin'

I was writing to someone recently in the blogworld that I've been having a lot of dreams about swimming lately. I thought / think these are omens about my new lungs coming.

Little know CG Trivia Fact- I was a swimmer when I was a kid, and a lifeguard and swim instructor in high school and college. That's right- I used to be healthy enough to save humans from drowning- and anyone from my lifeguarding class can attest that my lifeguarding teacher was possibly the fattest man ever seen in a bathing suit, and we had to do all our practices on him. Until I was about 20 my favorite thing to do was swim, and I loved to swim under water. Sometimes I would swim laps underwater. Same exercise. Double the fun. I thought these were dreams looking forward to my new lungs and I'll take deep breaths and let them out slowly and swim and swim and swim. Then I saw this commercial.

Warning: sorta sad commercial. but very true.

Am I just having these dreams about swimming because I cannot breathe? Oy.

Friday, May 21, 2010

New pictures from my KODAK Camera

Here are some great pictures shared from my KODAK M580 Digital Camera.

Sharing your life just got simpler. Just press share.

Here is What with the David Wallace

Everyone on facebook wants to know, "why'd you change your profile pic to some random man?" This question comes from those who do not watch The Office, one of the finest shows on tv. Even in America. I changed my profile pic to be that of one David Wallace, the former CEO of Dunder-Mifflin, the fictitious paper company that was bought out by the more-fictitious Sabre office supply company, more hilariously headed by "Jo," played by Kathy Bates.  David Wallace, the former archetype of the caring, yet bottom-line-watching CEO, is now a shadow of his former self, having been let go by the company during its merger with Sabre.  During an episode this year, Michael Scott (Steve Carrell) goes for counsel with David Wallace over his new conflicts with Jo and the company's corrupt policies. Finding the formerly dapper, well-mannered, gracious and kind David Wallace in an unshaven, pajama-wearing, swearing state around his house, Michael Scott ends the episode announcing, "That is not David Wallace," his hero is gone.

On last night's episode of The Office, Jo was conducting a fact-finding-mission to figure out who the company whistle-blower was. Sabre, having manufactured printers that spontaneously combust, was outed to the media in a video (made by the character Andy), and several other members of the Scranton branch. The product error and safety issues, obvi, are causing quite a problem for the company. The episode is fairly hilarious, and  in a 15 second scene (one of the things I love about The Office), the pseudo-documentary filmmakers find David Wallace sitting on his front porch, still unshaven, wearing a bright yellow hooded sweatshirt.  All he says is,

"I do not want to speak directly about Dunder Mifflin. But I do want to talk about . . .  Suck It." and he smiles.

The camera pans out and we see that his sweatshirt says SUCK IT, much like this t-shirt featured today on "T-Shirt A Day".

Suck It Image 1 

I found these 15 seconds of television to be poignant, moving, and downright accurate. Like the movie UP IN THE AIR, I thought it was a timely assessment of the country's unemployment figures. And that's all I have to say about that. 

In future news, Here is What with 32,000; Here is What with My Damn Head.