Most Influencial Bloggers . . . What Do You Think?

http://www.cliohealthcare.com/winners_media/2010/pr/pdf/401000796_1_supporting.pdf

Today my girl Amy and I discovered that we, and many of our bloggies, have been named in a list of 12 CF bloggers as most influential.  They conducted a new-media study during 2009/2010, and the results were published more recently.

I was happy to review this listing because I think that it, on the whole, accurately describes the sphere of influence that some bloggers had. I DO NOT like that Novartis / CLIO Healthcare made up a "fictional patient" which I most likely interacted with. I think that is just unethical and ... weird.

So, look at the study - what do you think?

Note that my statistics as listed in the report are quite dated.

xo,
cg bp

Re: A CF question from another CFer

Little known fact regarding CG: I get a lot of emails. I love it! Keep 'em coming. One writer gave me permission to publish her email and my response, so here goes!

(PS Thanks JK for helping me blind it real good!)

Hi [new internet cf tx buddy!], and nice to hear you. First, let me say that I am sorry to hear that you have been listed for transplant, though it may be the beginning of a new life for you- so on the other hand, congratulations!

Where are you thinking of listing - which hospital?

I had my surgery on 7/27/10, so six months ago tomorrow!  My evaluation was a little different than most because I started the proess with an appointment and basic testing, pulmonary function tests and blood test, etc., and then I became quite ill and the rest of my eval. was pushed along more quickly. Most centers require a lot of blood tests (I had 19 viles at Cleveland Clinic), chest xray, chest CT, bone density scan, up-to-date dental and gyn records for the ladies, and an assessment of your stomach acid issues in different ways. There are probably some other tests that I am not thinking of, but those are the basics, physically speaking. There is a moderate psych exam to evaluate privately if you really want a transplant and if you are a good candidate - for whatever that means. 

Do you have a port yet? If you do, the needle poking will be less, with the exception of blood gases that DO hurt but it is true, you get used to it. If you don't already, I would recommend starting yoga or a meditation/breathing program. It saved my brain a lot of trauma during my tx process.

What are your other questions? I hope you don't mind, I'm taking off your name and posting them to my blog too! 

xo, 

On Wed, Jan 26, 2011 at 10:12 AM,

Hi,

My name is [NAME] and I also have CF. About a month ago, I was told that I also need a lung transplant. Yesterday was my last day at clinic at my current doctors and a nurse gave me your blog to read. I've been wanting to talk to someone who's had the surgery done so I know what to expect.

Well, I can't really find WHEN you had the surgery done (maybe you didn't talk about everything that went on) because there's so much there. (that I'll definitely read when I have more time)
LoL

I was just wondering if you would mind answering a few questions I have.

Well, I haven't had the evaluation done yet and so I guess I'll there.

What all did the evaluation entail for you? I know there's a bit of needle poking and I'm a baby when it comes to that. (you'd think we'd be use to it. LoL)

Hope you're doing well.

Your CF friend,
-[MY NEW FRIEND] 

--

Welcome to Joshland: Helping Out My Friends at CysticLife

Welcome to Joshland: Helping Out My Friends at CysticLife:
 "I am all for any organization that help the CF Community and promotes CF Awareness, so when CysticLife asked . . ."

One of my bloggy bffs made a video regarding Cystic Life and their membership drive, and what do you know- I totally agree with him. Watch the video today.

And p.s.- Do you think MeeGanko is a good name of a new puppet to be friends with Moganko?

bp

No Whammies, No Whammies!

I feel that this is my lucky weekend. No whammies. In the true tradition of random 70s references on this blog (which is odd, since I was born in 1980), I am starting to develop a theme for trying to get transplant calls which I will refer to as PRESS YOUR LUCK.

My last two tx calls came when I was very tired and once when I had worked out too hard, and my first reaction to the doctor on the phone was, "good, I'm sore from working out, I could recover during the surgery!"

This weekend, I have a pal coming in town as a surprise visit! We will have the very best time. His visit, is, of course, quite lucky. Also, I received this surprise from the blog world yesterday:

"I saw this cat and wished that CG would get her lungs really quick."

Weekend + Visitor + Magic Cat + B-Kitty's affair with Puppy = Good luck weekend!!

Have a great one, type at you Sunday!

Sunrise, Sunset. Sunrise, Sunset

I hope my buddy DW likes that title. :) or LK. or J-sing^. I could go on.

So, I've been down lately and trying not to write too much about it on the blog, because people get overly worried. I joked on twitter that there is a list in BOTH of my transplant binders (from both centers) about the "normal" feelings during the transplant process, and someone was tweeting about suicide awareness, and tweeted a list of signs. Would you believe that 1/2 of the sings of suicide are "normal" feelings during transplant? What does that say? I don't know, but it ain't good.

Here are the signs of suicide, (and this post is NOT a joke about suicide, so don't write me any nasty emails).

Suicide Warning Signs: (Available 6/28/10 http://www.suicide.org/suicide-warning-signs.html)

My side notes in italics

• Appearing depressed or sad[...]
• Talking or writing about death[...] - one of my binders actually recommends this.
  

• Withdrawing from family and friends. - worded differently, "your relationships with family and friends may change dramatically...
  
• Feeling hopeless.

• Feeling helpless.

• Feeling strong anger or rage.

• Feeling trapped -- like there is no way out of a situation.

• Experiencing dramatic mood changes - this, the binders blame on the steroids and other meds. I blame the experience itself, though it is certainly compounded by the double steroid rage that is also making me into a luscious lady!
  

• Abusing drugs or alcohol - this they warn against but I have known some that do it. Me, with my bleeding lungs, cannot partake to this degree.

• Exhibiting a change in personality. - doy.
  
• Acting impulsively. - What was that "live like you were dying" bullshit that I was tweeting about the other day. This also came up in my interview with wnpr, Am I having random fantasies of skydiving and going to Milan? Uh, no. I am having fantasies about long shopping trips at Target and waking up with a reason to get dressed (i.e. work). And I want a dog.
• Losing interest in most activities. - Yep.
  
• Experiencing a change in sleeping habits. - Ditto.
  
• Experiencing a change in eating habits. - Must work even harder on the fat making. I have succeeded by adding "ass-sitting" to the urban dictionary.
  
• Performing poorly at work or in school - Does being fired while you're waiting for lungs qualify as "doing poorly at work?"
  
• Giving away prized possessions. - In virtual terms, yes. I am the only one among my friends that has a will (the one for when you're dead), a living will (the one for when you worry that doctors will make you be dead), a health-care proxy (the one where you pick who is responsible for raising holy hell if your living will isn't followed and they try to make you be dead, or conversely, keep you alive after you are, sorta, dead.) --mine lists a wopping 5 people (which apparently is "a little weird," and do you know they make you put them in a horrifying order of importance that I have changed so many times that the "Patient Services Notary" knows me, personally, and tried to get me a date with one of the hot male nurses on my last dry run?
  
• Writing a will. - See above.
  
• Feeling excessive guilt or shame. - Considering I feel guilty even when I drive out of my way to the Full Service Only gas stations in Massachusetts, even though I am keeping them in business, I definitely have this problemo.
• Acting recklessly.- This one, apparently, is so common and crazy they had to list it twice. Does allowing my cat to eat Friskies wet food and two french fries per day count as reckless by proxy or munchausen-by-kitty behavior? 'Cause, then, I have it. And I have bought a lot of cheap rocker girl t-shirts at target for $8ea., but that is only because my fat and lusciousness has literally robbed me of all shirts of appropriate fit. (Take that, UnknownCystic and his friend and friend to BecketTheCat, UnknownFox).
  

So, there is my news in a nutshell. Once again, I am in no way suicidal. If I was, would I be on the damn tx list or fighting so hard to stay on it for these 8 months, 6 days, an about 7 hours? (Yes, I do remember the time of day when I forcibly hugged the head of Transplant Medicine, which I was told later, was a major event in the ICU, as it had never been seen before).

I am having some trouble with the fact that you start off on the list with them telling you that one of the criteria for listing is that you are not expected to live more than a year without a transplant. Then you spend some time on the list where everyone is making comments about how good your score is, how quickly you should get the surgery, how easy your recovery will be, and then it is 8 months later, and you think - only 4 more months and I'll be at a year, and then what? It is estimated that one person dies from CF every day in the USA (out of the 30,000 CF patients in the USA), and 19 people die waiting for organs, overall (non CF included).

I'm not saying that I'm dying here. I'm still living, and doing quite well at it, I might say. But I worry that some people think I'm guaranteed to get a transplant, and that I'm guaranteed to have an easy time of it, or even to survive it. And its simply not the case. The longer this process goes on, the more it seems like others think it's normal, and I think its... horrible. Others think that because my overall health has improved so much since October, and so has my activity level and ability to work- that I am "better"- let's not be confused- my lungs are not any better. It is only the work I've done to bring the rest of my body up to speed, to compensate for my lungs- that is better, along with, frankly, a lot of medical intervention. I joked with my doctor today, "I'm only one bipap nap away from respiratory failure," - and its true. My CO2 levels are still high. Not as high as they were, but TOO HIGH and without diligence they creep right back up.

All of my family members, and my friends here in Boston, and a lot of my theatre friends, or oldest friends from DG are so so so wonderful to me. Others, I feel, are banking on seeing me on the other side of surgery- perhaps because they can't deal with my medical situation, perhaps because they are just busy or have their own personal or family shit storms. I'm not upset with anyone, I just feel like - no one understands me but my bloggies, my immediate family, my most intimate group of friends here, and my old old homies. And you know what, that's a lot. But the question is, what about the other relationships? Can a gal live on 5 friends, 5 family members, and the internet alone? Maybe. Certainly, so far.

Now, I am rambling. And I don't even take Marinol anymore.

Goodnight and ps don't think I'm sad, I'm just all a-mess. Mess mess mess and now my cat thinks french fries are a midnight snack too. She is harrassing me. I leave you with this:

Hearts are broken, but souls are at peace

Sarah Jones wrote that her heart is broken into unrecognizable pieces, but her soul is at peace to know that her son Connor has been welcomed into heaven, where he breathes, runs, plays, laughs free.

It is hard to imagine the grief of a mother and father. It is hard to be us, the bloggers, this strange little world we've created of type type typing, click-picture-save-as-posting, stupid video-making, midnight-emailing that we do. It is hard to live in this CF world where the people that understand you the most are people you never see, that due to the numbers, are spread all over the country- all over the world. The people that can tell you how to feel better and when it will happen- they are these virtual people that you have never even met. Yet, we mourn together.

Earlier this year we lost Eva, at the beginning of her young adult life, post-transplant, hoping to take her rock and roll mindset further into the world and light the place up with her smile.

Now, we have lost young Connor and with him, a piece of our friend Sarah, his mother, in her journey to save her son, to celebrate her son, to live, laugh and love with her son bravely as his disease took him.

What can be done? What can be said? What will change the way we feel for her and our need to wrap our arms around her and her family, while we cannot? Perhaps to send her our messages of love, hope and peace. Perhaps to pray and meditate and breathe. Perhaps to spend a moment knowing that the fight that we're all in is real. It's real. It's not arguments over how to raise kids with CF, or McDonalds versus free-range chicken burgers, full time work versus disability, in-patient or home IVs. It's a life and death battle. Even that- the "battle" metaphor that we get in little blog-up-and-downs about. Whatever this is, this is real, and it is life and death. Life and death.

No matter how many times this happens, no matter how many times we are reminded of family and friends that are lost, no matter how many of our fellows pass on - each time the realization that this is real - it is life and death - it is a shock, and each time, we are not the same.

I leave you with this poem that I read for the first time when I was about 11 years old, attending CF Awareness Day in Chicago, to discover that one of the younger members had passed, and her mother arrived to give roses to the "older" members of our group that hosted the event- then called "The Chosen Few," as in "The chosen few that made it," (granted, I was the youngest member and didn't really qualify to be in the group, but I was nosy and liked to plan social crap.) I did not know the girl had passed away, and her mom gave us each a rose and this poem (you may have seen it before):

At the Death of a Child*

by Edgar Guest

I'll lend you for a little while, a child of mine, He said.

For you to love the while he lives, and mourn for when he's dead.

It may be six or seven years, or twenty-two and three,

But will you, till I call him back, take care of him for me?

He'll bring his charms to gladden you. And shall his stay be brief,

You'll have his lovely memories as solace for your grief.

I cannot promise he will stay, since all from Earth return.

But there are lessons taught down there, I want this child to learn.

I've looked the wide world over in search for teachers true,

And from the throngs that crowd life's lanes, I have selected you.

Now, will you give him all your love, nor think the labor in vain?

Nor hate me when I come to call to take him back again?

I fancied that I heard you say, “Dear Lord, it will be done!

“For all the joy Your Child shall bring, the risk of grief we'll run.

“We'll shelter him with tenderness. We'll love him while we may,

“And for the happiness we've known, forever grateful stay.

“But shall the angels call for him much sooner than we've planned,

“We'll brave the bitter grief that comes, and try to understand.” *

There are different titles, versions and authors attributed to this poem, but I'm pretty sure it is by Edward Guest.

The power of prayer, energy and anything you have: this red rose for Connor and his mother.

I was going to write a silly post about my love for driving and how everyone asks me, "You drove yourself here?" every time I go to the hospital, but I will save that post and ask any of my readers to please take a moment to pray, meditate, think and breathe for little Connor, his mother, and their family as Connor is losing his battle with CF and Prune Belly Syndrome, a rare genetic disorder, in the coming hours or days.

You may visit Connor's mother's page HERE http://notsobrightandshiny.blogspot.com/

From her site: "CF death statistics on average are 484 deaths per year, 40 per month, 9 per week, 1 per day." Connor, we cannot believe that this could be your day.

May you breathe easy, Connor, and may your family feel, through their grief, some relief in your passage forth.

Love, Cystic Gal.

Not me, but someone else.

It's a no go. Love and light to the recipient. The surgeon and his best dude came to see me, and I am more confident, than ever, that the system works and that it will work for me, and soon. They saved a life tonight, and it wasn't mine. Can I be upset about that? Sure. But I drove myself home with the wind in my hair, Eminem doing, "Beautiful" and "I'm Not Afraid," on the radio, feeling pretty blessed about the family, friends, and support from 100s of people I've never met, who are certainly not strangers. Pretty good life, hmm? And we'll do it all again tomorrow.

More then. . .

I came home to a huge grocery delivery that my loverly neighbors accepted and put away, and I'm gonna eat it all up and then pass out after my IVs. So far, I ate 2 puddings, 3 string cheeses, a coke, a gatorade, and next I plan to find something, you know, more dinnerly to snarf down. Must stay fat prior to surgery. OH YEAH, yesterday I bought 3 new cheap cute rocker girl t-shirts at Target, and I got my shirt in the mail from Ms. Piper!! SUPER!!

Good karma abounds.

Love and light to the donor family and to his soul in heaven or wherever he was planning to go, and love and light to the recipient and his family as they prepare to heal. Big prayers that they manage to sleep overnight, even on accident, so that they will be strong for the wake-up hours!!

Love, CG

Home Again, "Jill Zarin" not ready, and What's to Come

I am home again and boy are my arms tired... or something. I never get my stupid sayings right. I got home from the hospital today around 2ish and med delivery around 3ish and nap around 3:15 ish and woke about 7:45 ish and food delivery around 8:30 ish and "Bethenny Getting Married?" around 10:00 ish and time with my cat this whole time-ish and now getting ready for sleep 10:53 ish.

That was my day.

We're Not Gonna Take It! No, We Ain't Gonna Take It . . .

(It was about time that I used a 70s song title for my blog post title, I had sorta fallen off the 70s wagon there for a bit . . . I'm back!! Or should I say, Brandon's back . . . )

Brandon Rees is Mad at the Universe, and He's Not Gonna Take it, Anymore!

Brandon received his lungs about a year ago at the transplant / CF center that I used to attend in the Chi. He emailed my sister and I after his transplant and we became fast internet friends (you know how that is). Brandon is the bestest, and because I am quite a lady . . . stop laughing . . . because I am quite a lady, he decided to take his manly powers and write this quite un-lady-like post for me.

I present to you . . .

Top 5 Reasons I'm Pissed that Cystic Gal Doesn't Have Her Lungs Yet:
by Brandon Rees

"Things CFers Do" from CFFatBoy.com

Hide When Coughing

MAY 31, 2010 · 1 COMMENT AND 2 REACTIONS

in RELATIONSHIPS

HIDE WHEN COUGHING

©2008-2010 =manyetikbant

We’ve all been there: in the grocery store, at the mall, walking the shelves of the library, when, out of nowhere it hits you like a sniper bullet to the chest. Youhave to cough. There might not even be enough time to be conscious that it’s about to happen. Yes, your chest just went there! You’re just about to be publicly humiliated in one way or another.

There’s no time to make a decision! It’s time to duck, slide, glide, or shove your face into your elbow to muffle the 747 engines that just revved up. I’ve hidden behind produce islands to tie my shoe, ducked around shelves, put up newspapers, and slipped into empty rooms.

Your surrounding audience is going to perceive you one or more of the following ways:

• as someone about to die on the spot
• as someone suffering from the swine flu
• as someone who should have stopped smoking 512,478 packs of cigarettes ago
• as someone who is going to infect them with whatever made you cough like that

Full, Funny Article Available HERE

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:

http://natandmarty.blogspot.com/2010/05/writing-for-gratitude.html

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:

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:



NEW BLOG THAT I LOVE!!! http://justinekomin.blogspot.com/

T-SHIRT ORDERING TIME!!! http://cysticgal.blogspot.com/2010/05/t-shirt-time.html

Can we pretend that airplanes In the night sky are like shooting stars?

If you like hybrid genre music including rap and singer/songwriters (which I do), and you need a little uplift (uh, I do), you might like the song that has MADE MY DAY. It is called, "Airplanes" by B.O.B. featuring Hayley Williams from Paramore (and tell me again why I don't get sponsorships for my blog?)

Some lyrics:

"Can we pretend that airplanes
In the night sky
Are like shooting stars
I could really use a wish right now (wish right now, wish right now)"

This song is the bomb-diggity. In other news. An exploration...

Girl A

This week's task is a big one. I've had a couple of bad weeks around here. In fact, a lot of bloggies have been feelin' down, it seems. I blame the cold NE weather. I blame the so-called "lung drought," -yes, it's actually been called that (though not by my teams). I blame CF. Finishing another round in the hospital, and finishing home IVs including embolization plans and a "is my port ruined?" scare- I had it up to here with this whole little project we call, "The Transplant Journey." I was thinking it should be called, "The Transplant Hell Hole" or "The Transplant Transformation into Someone You Don't Recognize, Thinking Thoughts You Never Thought Before, and Looking Different Than You Ever Did, and Why Can't I Remember Anything? Time for a Nap." Which brings me to my point- this week's task: Remembering the ways in which that girl (up there), is the same as this girl (down there):

Girl B

And yes, I did choose to use the professional shot where for some reason I appear to be rolling around on the ground, which apparently in the theatre really conveys, "teaching artist"- also to annoy J-Prof^.

For the readers at home, you might be thinking, well duh, of course these are the same two people. Alas, it must be proven. Girl A has forgotten all sorts of things that Girl B used to love, believe in, do and enjoy. A list must be compiled and checked off. Girl B will not go down without a fight.

First task for Girl C: A Return to the Grocery Store. Some of my early blog readers may recall the horrifying Stop n Show Experiences in the summer of '09 and a repeat performance even over Christmas. Bravely, Girl C will go to the grocery store tomorrow, and report back.

Piper, James, JUSTINE and I ask the fates for TONIGHT: Transplant QUADRUPLICATE?

Piper Beatty, James fahr, Justine and I want this to be this night for our transplants. Last time Piper and I made a pact for our transplant, Jess got the call- so it can work! Tonight tonight tonight! Say your prayers, cross your fingers, don't step on a crack- whatever you need to do to get Piper, James, Justine and I our lungs!!! I repacked my bag, and it's on!! Let's try to get 'er done!

*just to be clear, I didn't get the call, I just am trying for one of us three to get it- and maybe all three!

love, cg

Eva Makes International News, Again, on CNN

Earlier on this blog, I referred you to read Eva's blog. We lost Eva to post-transplant chronic infection in March. Today, she made international news on CNN. Take a look.

Love, Love, Love to you, Eva.

cg

Another Blog I Lke

This blog is by a young man named Mark who got his transplant in March at Cleveland! I look forward to all this stuff after my transplant- yes, even cooking dinner without cranking the juice up to 3L and possibly setting myself on fire!!

Also, you can read this article about him in the Boston Globe.

Congrats, Mark!

CG Smackdown: Boys versus Girls

Earlier this week, I was challenged by a fellow Fibro to compare our Cystic Adventures. The below is our result. Ever think the CG blog is too girly?! I didn't think so! But you be the judge. Read on . . .

CF BLOG THROWDOWN: BOYS VERSUS GIRLS

Are you ready for the CF Rumble in the Jungle?

In the pink corner, we have CysticGal, sensitive and kind, who adores pictures of bunnies and anything pink. She is loving, caring and the perfect model of CF womanhood – A poet of the highest order. And, fan of fuzzy animals and all things “chic.”

In the blue corner: me. I don’t take showers in the hospital; I smell of man musk most days. Raw, nasty and gross and 110 percent CF man. Defective chromosome and mucus-filled lungs ready to roll in my “Smokey and the Bandit” black Trans-Am.

Bring it on, "UnKnownCystic." Respect for showing up.

TEN QUESTIONS: Boys vs. Girls

1. What is your favorite thing to spit your sputum in?
CysticGal: I'd prefer you call it "yucky." I spit the yucky in a pretty blue cup.

UnknownCystic: An Old Milwaukee beer can so I can shoot it off a fence post later.

2. Things you'd like to say to your nimrod RT:

UnknownCystic: Is that my inert pulmozyme in your body-temperature-heated pants pocket? Or, are you just happy to see me?

CysticGal: If you hit my boob again, we're done.

3 What do you think about when you're at the gym:
CysticGal: That's right, I'm naturally thin and walk this slow on the treadmill. Suck it. And stop staring at me.

UnknownCystic: I don't like cadio or being a thin guy. No matter how many weights I lift, I won't look muscular. Where's the radioactive spider that turns me into Spiderman?

4.What excuse do you give to avoid taking the stairs?

UnknownCystic: Sorry, my knee is acting up again. Old bear-hunting injury. But we ate like kings that night. We ate like kings!

CysticGal: These heels are killing me! I'll meet you up there. (Said while wandering off toward the elevator.)

5. What is your biggest worry about your body?
CysticGal: That others will be jealous of my supermodel thin bod. Poor ladies!

UnknownCystic: I worry about the inside of my body. Don't want to be coughing up blood when I'm hanging with supermodels, do I? BTW, the bag over my head helps in those situations.

6. What is your most attractive CF-related quality?
CysticGal: My raspy voice gives me that Demi-Moore-esque quality... or is it that I'm sleeping with Ashton Kusher?

UnknownCystic: I have no attractive qualities, hence the bag over my head. CysticGal, digging your choice of Demi. I'll call you late one night for a . . . talk. You can call me . . . Ash, baby, Ash.

7. What would you change about your CF Clinic?

CysticGal: I'm not saying that it's okay to use prescription drugs for the wrong reasons, but I am saying I'd like to be high the whole time. I think its best for all involved.

UnknownCystic: My clinic experience will be similar to eating at Hooters. I want hot wings and ESPN in every exam room. The nurses, well, you get the idea. Oh, and can you tell the "high" woman in room 7 to pipe down.

8. What line of poetry best describes living with CF?

CysticGal: "A good day ain't got no rain, and a bad day is when I lie in the bed and I think of the things I might have been." I don't expect UC below to understand that. So I'll offer him this: "Genetics: It'll screw you every time." That is not poetry but just a phrase I like to incorporate into all of my explanations of CF.

UnknownCystic: This is a chick question. I read "Hunting Dog Monthly." But here's one from my hardhat to impress. And it's from a woman, Sylvia Plath. "Her blacks crackle and drag." I think that's what she wrote, but I'm a dude and too lazy to look it up.

9. Who would you be if you didn't have CF?
CysticGal: Clearly, Angelina Jolie. Without all the adulterous and bizarro family stuff. Just the kids and the famous actress and Brad-Pitt-as-husband parts. Oh yeah, and she's dead sexy- like me. I'm sure if you asked Angelina Jolie who she would be if she had CF, she'd say, "Cystic Gal."
UnknownCystic: That's funny, CysticGal, because I'd be Brad Pitt. Actually, I don't like Angelina's tattoos. I'd be Brad Pitt but with my wonderful wife and daughter. Sorry, love is love and hard to find.
CysticGal: Awwww, that's sweet. And lame! Just kidding.

10. What career would you have if you didn't have CF?

CysticGal: If CF exists, I would be a child-life specialist at a hospital. I think that job is the best but I can't really do it because of all the infection control issues. If CF doesn't exist, I would be . . . ME but with lungs that worked. I think I've done a pretty good job along with having CF. And maybe I'd be fat, which I wouldn't like, but, you know. Win some, lose some.

UnknownCystic: If CF exists, a scientist to help cure it. If CF doesn't exist, a Chippendale's dancer to help cure something else. Does anyone have change for a dollar?

Reintroducing a Shout-Out to "Sick Girl Speaks" TIffany Christensen's Blog

Tiffany Christensen, Photo available at Sick Girl Speaks Blog, link below!

Do you like my blog? Well, there is another blog and a few books you might like over at Sick Girl Speaks!

Cleveland Clinic Rocked

I have been meaning to post this since I got back from Cleveland Clinic for my 2nd lung transplant eval. It was awesome. Awesome Awesome Awesome. Here are the top ten reasons it was awesome:

1. Now I'm on two lists so I'm virtually guaranteed to get a transplant.

2. The doctors there were all, across the board, smart, direct and kind.

3. I now know my LAS score, which my other center refuses to discuss with me, telling me it is a UNOS policy, when in fact it is their policy. I am very comfortable with my score.

4. They have 4 tx surgeons and 5 procurement teams.

5. They do a surgery more than every other day. ( I can't quite say daily.)

6. Their patient services were phenomenal. Walking in, they give you an oxygen tank, check your machine or tanks like its a coat check, give you wheelchair if needed, help you find your way. They call if they can bump up your appointments. Wait times were minimal. Never did I receive a, "you're ten minutes late" grumpy attitude. Labs and Xray places all over- you go to whatever one you walk by and they're ready for ya. Everyone in a good mood. Everyone nice. No kidding! So very impressed.

7. Nifty shuttles help you get around.

8. Doctor in charge of my care gave me a hug and agreed that I am not in a "tender time of my life," as recent events have dictated. (She was like, "It's not a tender time, you're dying!" and I was actually relieved at her candor. I will write more on this issue in later posts.)*

*NOTES, but not apologies: When the doc said this, in the context of the conversation, it was both appropriate and a relief. I mean, we had already looked at my horrazzizable CT, discusses my case, and really, anyone active on the list is indeed on there because it is believed they would not survive otherwise. The reason her comment was a relief was that I received a recent correspondence that was "so very sorry for me" at this "very tender time in [my] life," which I thought was disgusting in context of its greater message because I don't think of being pre-tx as being a tender time. I think of it as a fight to live. I'm fighting for my life here, and giving up a lot, gaining a lot in the process. It is a biting, kicking, scratching (then sleeping) time of my life, but it is not "tender," like a piece of meat, or a baby bunny. Though, I would make a really cute baby bunny. ;)

9. We found a nifty Residence Inn where we plan to stay post-tx. This makes me ever the tx twin with Jessica Newport.

10. Generally renewed my faith in transplant process. Priceless.