Saturday, July 31, 2010

Chillin in one of my adorable annie and isabelle gowns! Thanks so much. I'm worn out today from getting rid of 4 tubes that will go unexplained, and my post surgery adrenaline: gone. Very sore and tired, but breathin' deep and can't wait for a fresh start tomorrow!

Friday, July 30, 2010

CysticGal Called Last Night

Last night CysticGal called me for a few moments at 10:31.  She sounded super.  She says it hurts when she coughs, and CysticDad is running around trying to find her a super great hard pillow like I had.  You hug it to you when you cough, and well, it makes you feel a bit better.  Lots of coughing happens after transplant because lungs get irritated after you say, take them out of a human and put them in another human.  They make a lot of mucus as a defense mechanism, but it is not CF mucus, rather, normal people mucus, it is just that there is a lot of it. 

And now for a surprise!  CysticGal text me this self-portrait, and told me to post it on the blog!  CysticGal, July 29, 11:16 PM.  That's about 42 hours after she got out of surgery!

Thursday, July 29, 2010

Progress for CysticGal

Another good day for CysticGal.  She looks great according to CysticMommy.  She went for a walk today.  They took her off of the heart monitor and removed the NG tube.  She is eating Jello and drinking Ginger Ale.

I forgot my other notes at work.  :(  If you have any specific questions, you can email me at peterstmusc@gmail.com.

Wednesday, July 28, 2010

Yay CysticGal is Rocking OUT

CysticGal is off the ventilator, sitting up, and talking up a storm!  She is my sister after all :)  xxoo

CysticGal trying to breath those lungs

CysticDad just called and they kicked him and mom out of the room in order to bronch CysticGal and also try to pull her off of the ventilator.  He said that they will give her a PCA, which is really a nice luxury I never had.  Go CG!  In the words of Dr. Duane Davis, "Breathe slow and deep like a normal person!"  :)

More CysticGal Progress

I just heard from CysticDad.  CysticGal is in ICU, and in and out of consciousness.  She has asked for her glasses.  Her eyes aren't that bad, but I bet that dope makes them feel blurry :).  She indicates that her chest hurts.  CysticDad feels like things are going really well.

Small Update on CysticGal

I haven't really heard anything from my parents, but I did hear that CysticGal was in ICU as of this morning and doing very well.  Hoping to hear more from the P's soon.

No Lungs, No Peace, Get Outta Here!

As of 5:26 AM CysticGal is out of surgery, off the bypass, and is scheduled to arrive in the ICU shortly. 

Whoo hoo!  Thanks to everyone for their well-wishes and especially to the donor family, for a faith that is hard to imagine.

Here are some of her Facebook and Twitter comments (names withheld):

Thinking of you today. Go get 'em.
Sending good thoughts your way! We love you!
Be the ones!! I won't hold it against you if we can't meet in Columbus because you got NEW LUNGS!!! Be the ones!!
Hoping, hoping, hoping
sending good thoughts your way
Yay!!!!! Peaceful vibes peaceful vibes peaceful vibes
Good, good, good thoughts from England!
So you got the "call"? Im out of the loop since my daughters admission.
Are you at the same place I got mine? It isn't Monday so this is not going to be a dry run! Your turn is today!
love and light your way all the time.
Love!
WHOA!! Such exciting news! Sending every ounce of good energy, love, hope, prayer your way!!
So much love to you !!!xoxo
Thank God! I am so excited! Let me know if you need any. Thing.
Yaaaay! Good luck girlie, keeping you in my thoughts
WOOOHOO! smooth surgery vibes heading your way! this news made my day, week, month....and more! i can't stop smiling....can't wait to hear that you are recovering and breathing easily again!
I'm sending such good vibes right now. Can you feel them?
Liking this so hard! Good luck!
Wow! Crossing my fingers and hoping like crazy for you....
Thoughts, prayers and hugs to you!
Yay Yay Yay!!! Remember when I am the Maid of Honor is this surgery! :) love love love
Countless good wishes, prayers, love, and really good juju your way, Sweetie. Will be attached to the computer from now on. Love, love, love you.
My thoughts and prayers are with you!
Good luck! I hope everything goes well!
Good luck ! Sending out the best vibes I have!
Sending positive thoughts, love and prayers your way!
 Finally!!! We will all be thinking good thoughts for you!! Love from us all.
Praying, praying, praying...and I just put on my CG-T-shirt for extra good measure...good vibes...everyone's pulling for you! Love!
Sending the most positive thoughts I have to you!!!
prayers and hugs to you!
prayers and love and gratitude and receptive peace.... and deep deep breaths of sweet cool air!
Good vibes are being sent your way!
Just read the message. I am praying everything goes well for you. It's been a long wait.
Sending good thoughts your way !!! xoxo
wooohoo!
love to you, friend. thinking, hoping, praying, sending good energy -- whatever i can do to get the message across!
I'm so excited for you!!! Please let these be the perfect windbags for you!
Thinking of you CG!!!
please send all the love and light you can spare over to [CysticGal] this afternoon as she waits for a possible lung transplant. go, CG, go!
sending good lung vibes to [CysticGal]! crossing fingers for "a go"! ♥
Fingers crossed that this is the right pair for you! I hope you packed your music and sneakers for walking around the ward after! Lots of love your way.
Wahoo  !!
I am just reading about all of this [CysticGal]...I am praying for you!!
Are you kidding? Have you seen my facebook status as of last night? This is awesome.
I'm looking forward in hearing from you soon. Good luck!
Good luck!!!!
You are in wonderful hands Beth, we are rooting for a smooth path for you. Wahoo !
is hoping her "no rejection, no antibodies" status lends positivity to [CysticGal] and her transplant!!! NLNP!
I am sending all my love and healing thoughts. Wake up rested and breathing deep my friend.
I hope this is the real deal. Then we can celebrate your birthday and new lungs later in August/September. These would be the best early birthday present you could get. Good luck and I hope everything goes smoothly for you.
hope it's going well ! love and positive vibes to you right now!
OMG!!! Yay!!!! Thinking of you right now and praying my little heart out! I'm so happy!
I hope everything goes great cousin!! Good luck!!
All a part of the master plan. You get new lungs, and I get a PIR director in the spring! Go, girl, go!
Hope everything is going well tonight. We are thinking of you and sending good thoughts your way.
Those docs should really let you text message from surgery, my Chicken Patty. Until they do, FaceBook must suffice. Guess that birthday party of yours will be from recovery after all!!! Love you!
so unbelievably happy for you, CG!
YAY!! Thoughts and prayers are with you!!
Sally!
All the love and light I can muster up is headed your way. So very happy for you.
Awesome news! Very happy for you. Thoughts & prayers are with you tonight.
Yay!! Go [CysticGal]!!!!
ALL OUR LOVE AND PRAYERS TO YOU!!!!!!!!!!!!!
LOVE YOU BETH!!!!!!!!!!!!!!!!!!! Thinking of you and knowing that your greater than mine will ever be!
Lots of love. Lots of light. Lots of prayers. ♥
You have my absolute best wishes , hope to hear great news from you soon!
BEST WISHES , thinking of you!!!
Congrats Lady!! Such great news!! :)
Thinking of you!
@CysticGal u r in my thoughts and prayers for a speedy recovery!!! ♥♥♥
3 cheers for @CysticGal. Getting her lungs as we speak.
Fingers crossed for @cysticgal who is getting a new pair of lungs (!!!) right now. Hope the surgery goes well!
Please send prayers out for mah friend @CysticGal who received a double lung transplant tonight. Crying for her (cont) http://tl.gd/2pk0oi
Please pray for my friend @cysticgal as she has a lung transplant for #CysticFibrosis
Heard from a mutual friend you're getting some new breathers. Just wanted to send you some good luck.My thoughts are with you! :) .
The @cysticgal news is the best news I've heard all week. And it's only #Tuesday. #cfusa #transplant
Lungs are tonight's reason to smile! @cysticgal
@CysticGal is just under the knife to receive her new air bags! I'm so excited for her! #transplant #cfusa
@cffatboy @unknowncystic perhaps simply wearing THE MOST BADASS article of clothing we own, in honor of general @CysticGal badassery.
What color do we wear when @CysticGal gets out? I'm not wearing pink, but I have salmon.

Going to bed with prayers for @cysticgal. Her blog says double lung transplant has started http://bit.ly/19p8nM
@CysticGal We don't know each other but I caught a tweet abt ur surgery tonight ~ I'll say a prayer for ur speedy recovery..sending hugs!
Sending love & hope RT @chronicuriosity: @mccordalex your faithful, feisty friend @CysticGal is getting a double lung transplant tonight!

All my <3 to @CysticGal - new lungs at 21:00 EST! Tweet (or RT) the love, people! #cysticfibrosis #cfusa

Salty Dog, by CysticLady

First, an update.  CysticDad just called and said they came out and said everything is going textbook so far, they have put in one whole side of new lungs and they are getting ready to take out the next side.  Yay!

Second, a comment, I only have writing permissions on the blog, so I won't be able to approve any comments that you make.  Sorry!

I was reading my posts keeping the readers abreast of the status of my sister, when I realized that they lack that wonderful little thing called EMOTION.  This I attribute to me being a "salty dog."  For those that are not aware, that is a word/phrase used in the Navy and Marine Corps to describe an old and experienced sailor.  I think it is also specifically fitting to anyone with Cystic Fibrosis, since we are literally so salty.  And, by the time you are almost seven years post transplant you just roll with it. 

So, in the case that CysticGal goes back and reads my posts on her blog, these are my words of advice on how to survive your transplant:
1)  Slow and steady wins the race.  Thanks to Michael Reidy, M.D., for explaining to me early that this is a day to day process that will last forever, not a quick race to the end.  Just keep chugging along.
2)  Use people's strengths, don't make them be good at their weaknesses too.  For example, one of your a-hole doctors may have a personality problem, but may be the best physician.  Separate the two, and get someone else to give you warm and fuzzies.
3)  Don't get discouraged by bad times.  It is easy to feel disappointment or even failure when you have rejection, or a cold, or your PFTs have fallen.  It's just one of those things that happens.  See #1.
4)  There is no normal, there is only experience.
5)  Work harder than you ever had.  You want to pray?  Pray while you're walking.  You want to swear at people?  Swear while you're walking.  You want to tell people to SUCK IT?  Try the phrase, "I walked four miles around the nurses station yesterday, SUCK IT."  It rules.
6)  Brag like hell about how awesome you are.  (I think CysticGal has this one down already)

Will keep updating.  TP

Tuesday, July 27, 2010

It's a GO, for realz

Best update so far...  CysticGal surgery is started.  Her incision is made.  CysticParents are on the scene.  Storm in Charlotte held up the plane.  CysticParents sound tired.  Friend T^Money is still on the scene too.  Thanks for all of the warm fuzzies and prayers and all.

This is what I know so far

Beth is under anesthesia and my parents are... somewhere.  Real surgery to begin shortly.  My guess is that they were on US Air flight 1176 that was supposed to land at 8:14 and actually landed at 9:27.

Update - Looking Good

CysticGal Reports that "Things are looking good.  Dr. C-Boston-y is procuring the lungs.  They think surgery around 9."  That's 21:00 hours folks. 

Parents In-Route

CysticMommy and CysticDad are in the Charlotte Airport waiting to catch their 6:00 flight to Boston!  No update from CysticGal yet.

Post from CysticLady

CysticGal is at Brigham & Women's right now, having gotten a call that she is the candidate first in line for lungs.  The Cystic Parents have plans to fly up there and land at 8.  Exciting!

Got a CALL

As the primary recip. ...
Will update. Gotta go to hospital!!
Big prayers and love and light my way, pls.
xxoo, cg

Saturday, July 24, 2010

Next Time I Hear "You Shouldn't Meet Others with CF" . . .

from someone in their thirties or forties who's been involved with CF for 15 years tops in a sort of academic 9-5 way, when we've all been fighting it every hour of every day and night for 30 or 40 years in a sort of physical, kinesthetic, life and breath way, I want to tell that person to read this blog entry :

http://fromatopink.wordpress.com/2010/07/21/a-look-into-the-thoughts-of-a-cfer/#comment-518


by a lovely Cystic Gal who really needs some support and just isn't getting what she needs from her non CFers and the g-damn internet.

And p.s., I'm waayyyy more likely to have gotten all of my bugs from the doctors that come in my room, insist on shaking my hand, sit down on my bed after they've sat on 100 other patient beds, dangle their germy ties in my face, or sloppily forget to wash their hands-wrists-stethoscopes, than I am to catch comething across a room from another CFer with a mask on.

And don't CFers still get together at the CFRI conference? And isn't there a big difference between going to camp in the 80s and doing our nebulizers in the same room all at once, and then sleeping side by side, than meeting for lunch once a freaking year to feel like you know someone who is at all like you- aren't those things different? AREN'T THEY?!

Okay, enough about that. I guess I'm ranty this July!

Thursday, July 22, 2010

well this'll be a quick post

I have had so many wonderful visitors this month of July that I have not been doing that many high-quality posts, so many of you wonder what's going on... I'm going to try to give you a top ten list as quick as I can (another guest on the way) to tell you what's going on:

1. I started developing websites for me theatre colleagues and friends. I really enjoy this and wowsers, I'm good at it to.

2. I've been packin' and shipping Cystic Gal t's! Already sold out of gray adult medium! Contemplating 2nd order.

3. Preparing 2nd printing of UNTO THE EAST.

4, Reading, but not  writing, many poems. Feeling sort of blank.

5. Had 2 dry runs but you know of those- and 2 other "offers" that did not result in even getting a call.

6. Needing new clothes as my ever growing BMI dictates that nothing fits me. As someone who hasn't changed sizes since the year 1997, this has been daunting to me. In a good, but annoying, way. Most of you don't know this about me, but I am super cheap when it comes to item-procurement, and super uncheap when it comes to convenience/experience. Buying clothes, as a most inconvenient boring experience resulting in the procurement of items, is a real chore for me.

7.  Spending time with B-Kitty who is acting super old lately now that she is single and apparently, not ready to mingle.

8.  Watching lots of old episodes of THE CLOSER. I love that sassy lady, and I love a good cop show.

9. Wondering why I have been on the list so long and preparing to face the music that it's been 9 months. If this was a maternity time, I would have a stupid baby by now. I mean, a smart baby. You know what I mean.

10. I have been "consulting" for a theatre. Apparently, this means when you continue to do what you used to do, only without showing up. I really like consulting.

xxoo, probably no post til Tuesday,
cg

Tuesday, July 20, 2010

It's official

We're sleeping together.
Don't forget to vote for my mommy's ridiculous Cystic Gal picture http://inkspot.customink.com/iotw/photo/the-cystic-gal-chillin.html.
Have a great night.
Love, BecketTheCat

CFF events, cardiovascular activites, why, oh why?

Since I wrote the below email, I did receive a follow-up email stating that in the future, this event will have a box on the invite that directs those who want to volunteer or participate without climbing, to contact the CFF office. I take that as a little bit of progress?

Also, just this morning, I was invited to a walk-athon- several miles, for CF, that also did not have any information on how to participate if one was not able to do the long walk. ? But because this theme has overwhelmed this damn blog this week, I will spare you that email exchange.

The bottom line is, if you're going to invite me to a CF Fundraising event, you better make it clear to me how I, a patient with end stage lung disease, could support the event other than just giving money. As a theatre administrator, I have never worked for a theatre company that did not go to great lengths to advertise the ways in which their events are accessible to all audiences - why does a organization that serves a community with accessibility issues completely ignore them, I do not understaaaaaannnnnnd!'

k-read below, oh and then vote for my picture on CustomInk.Com so I can get $100 off my next order: http://inkspot.customink.com/iotw/photo/the-cystic-gal-chillin.html

<
This seems to be an event that many adult CF patients, like myself, would not possibly be able to participate in. Is that the point of it, like its supposed to be a play-on the idea? If so, that needs to be articulated.

Is there some way to make the event accessible? There is no mention on the invite of how/if a person who cannot climb a million flights of stairs could participate and gain pledges. Couldn't there be a simple message that non-climbers could gain pledges and take the elevator up- its about the donation, not the athleticism--- right?

I am continually confused as to why the CFF plans almost exclusively cardiovascular fundraising activities and alienates much of the actual CF population. Whatever happened to Bowl for Breath? Now that's an event that everyone can participate in.

Don't get me wrong, I think every fundraising attempt is great and for a good cause, but people are always asking me to articulate why I don't think the CFF adequately supports the adult population, or reminds parents of children with CF that there is an active, thriving, growing adult population - by hosting events like this one that might as well say,

IF YOU HAVE ADVANCED LUNG DISEASE, YOU CANNOT PARTICIPATE. PLEASE STAY HOME BUT DONATE ONLINE. WE'D RATHER NOT ACTUALLY *SEE* YOU.

Just my two cents,
Thank you,
Cystic Gal [Real Name Here}

On Thu, Jul 15, 2010 at 1:51 PM, Cystic Fibrosis Foundation, [...] wrote:

July 2010

CLIMBING FOR A CURE
47 FLOORS, 94 FLIGHTS, 1,034 STEPS - STRAIGHT UP!


Good Afternoon!

Whether you are an avid climber, a CFF supporter, or both, please visit[edited] to register online or to make a donation to the Cystic Fibrosis Foundation's 21st Annual Climbing for a Cure!
This fun, high energy event will be held on Thursday, November 18th, 2010 at the US Bank Building in Downtown Milwaukee. After participants climb to the top of the tallest building in Milwaukee, they will have the opportunity to enjoy amazing panoramic views of the city before heading down to the post-climb reception complete with food, drinks, entertainment, and awards!
For more information and to register online today, click here!
FUNDRAISE TO FLY:
The KEY to FUNDRAISING is SET A GOAL & START TODAY!
All participants who raise $1,000 or more by November 18th, 2010 will have their name placed in a drawing for one pair of roundtrip airline tickets courtesy of Frontier Airlines!Restrictions apply.
A SPECIAL THANK YOU TO:
Frontier Logo
START YOUR FUNDRAISING:
Climbing for a Cure is a pledge-based event with each participant raising a minimum of $50 in pledges to participate and to receive a Climbing for a Cure T-shirt!
Here are a few FUNdraising ideas to get you started!
  • Do an online letter writing campaign!
Once you register online, you have the opportunity to edit your personal 'Climbing for a Cure' webpage with a meaningful message and favorite photo, create your fundraising letter to email to supporters, make a donation and view donations. You also have access to other fundraising tools such as, the fundraising tool kit, videos and more!
  • Hold a Jeans for Genes day at your office or your child's school!
  • Ask your favorite restaurant or local bank to get involved in a pin-up campaign.
Please click here for additional fundraising ideas. For further ideas and/or additional assistance, please contact [edited] at the Cystic Fibrosis Foundation.
Net proceeds from this event will go toward CF research, care and education programs.
Thank you for taking steps to help add tomorrows everyday to the lives of the 30,000 children and young adults with cystic fibrosis.
Sincerely,
[edited]

Vote for my photo! "The Cystic Gal Chillin'"

 Vote for my silly photo so I can get a $100 discount on my next CG T-Shirt order!
---------- Forwarded message ----------
From: <iotw@customink.com>
Date: Tue, Jul 20, 2010 at 6:40 AM
Subject: Your Ink of the Week photo "The Cystic Gal Chillin'" is now live!
To: patientpress@gmail.com


CysticGal,

Congrats - your Ink of the Week photo is now live. You are officially entered in the CustomInk.com "Ink of the Week" contest.

Contest winners are determined on a weekly basis. Tell your friends to visit your page at the link below and rate it because the CustomInk judges are influenced by pictures that have high scores. We'll notify you by email if your photo wins!

Share this link with your friends and don't forget to add it as a link on  your website or blog:

http://inkspot.customink.com/iotw/photo/the-cystic-gal-chillin.html

Good luck with the contest!

CustomInk.com

Monday, July 19, 2010

A Message from BecketTheCat

Cystic Gal is chillin' on the porch and will not be writing a new post tonight.

Email Schmeemail. Converse with me dammit!

For those of you who have been watching my debate about my wish for the CFF to more actively serve and accept the adult CF community, as many of you have written and agree with me that you feel marginalized from the CF community and exhiled to the internet- here is a birds-eye view of my email correspondence today. It is not altogether polite, but I think it gets the point across.

heart,
cg

<<
Thank you for your curt reply and for your bolding of *your.* As I can indeed read, I was aware of the use of the word "your," but if I indeed could not read well, perhaps your email response would have been of assistance to me. Please reply if you would like to engage in a more rousing conversation or address my concerns more appropriately. Your cut and paste skills, however, are remarkable.

Best,
CysticGal
[I put my real name in the real correspondence, just fyi]







Subject: RE: [TAGGED] RE: Register for Web cast!
Date: Wed, 14 Jul 2010 14:33:04 -0400
From: CysticFibrosisFoundationInfo@cff.org
To: bethpetersboston@msn.com

Cystic Fibrosis

Hello Beth,

 

Thank you for contacting the Cystic Fibrosis Foundation's National Office and for sharing your concern.

 

For more than 50 years, with the support of people like you, we have advanced the search for a cure. Today, thanks to remarkable scientific and medical breakthroughs, people with CF can now expect to live into their 30s, 40s and beyond.

This particular Web cast is tailored to both adults with CF as well as parents of children with CF. We will be featuring experts from both pediatric and adult care. Michael Boyle, M.D., F.C.C.P., Director of the Johns Hopkins Hospital Adult CF Program will be answering questions, among other doctor's working in adult care. This web cast will have "tips on working with your CF care providers to maximize your or your child's CF care."

We also have a Web Cast Library with numerous topics that are of concern to adults with CF: http://www.cff.org/LivingWithCF/Webcasts/ArchivedWebcasts

We hope this information is helpful to you, and if you have any more questions or concerns, please feel free to email us.

 

Best,

 

Cystic Fibrosis Foundation

National Office
6931 Arlington Road
Bethesda, MD 20814
(800) FIGHT-CF
http://www.cff.org
info@cff.org

 

From: CYSTIC GAL
Sent: Tuesday, July 13, 2010 4:49 PM
To: Cystic Fibrosis Foundation (info@cff.org);
Subject: [TAGGED] RE: Register for Web cast!

 

Thank you for this email. However, recently I've been in ongoing conversations with CF patients about how/whether the CF Foundation is focused on serving its growing (thriving) adult community- this email is an example of how it does not. The premise of many/ most CFF emails that I receive are that the patient is a child, which is not wholly appropriate. Could there be a webcast with a similar theme for adult patients? Could the wording be altered so that parents are reminded that CF adults not only exist, but are the rule, not the exception?

Thank you,
[CG]





From: info@cff.org
To:
Subject: Register for Web cast!
Date: Tue, 13 Jul 2010 10:54:54 -0400

 







 




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Sunday, July 18, 2010

Ways to Give Back: A Party for Pete

This Sunday's Way to Give Back is a special shout-out to my New England Readers! Last year, I had a wonderful time attending this event:

4th Annual Party for Pete

Saturday July 31st from 730-10pm @

The Wonder Bar in Allston

Mark you calendars!

Tell all your friends!

$40 includes food and open bar as well as 1 raffle ticket.


All $ goes to the Cystic Fibrosis foundation.

The Wonder Bar in Allston is a pretty jammin' joint, and the event celebrates the life of Peter James, who lost his battle to CF, and attended the same clinic as I do, currently. Peter's mother, Fern, is a former colleague of mine, and we met in the small world as it is - and I am proud to support her event, though I will not be able to attend this year. (Too jammin' for me)

I'm gonna keep it real on the highlights of this event so that even you non-CFers will consider attending:

1. Two words: Open. Bar.
2. Goooood foood.
3. Jammin' music.
4. Lots of hot guys in their twenties. For serious.
5. Lots of hot ladies in their twenties.
6. You add all that together and you have a good time on your hands.

I hope you plan to attend, as all proceeds directly benefit the Cystic Fibrosis Foundation.*

Other Ways-To-Give-Back Features this year:

Drew's Team
Angel Flight
Noah's Hope
Lymphangiomatosis & Gorham's Disease Foundation
Rock CF
American Cancer Society
Ronald McDonald House.

Rock on!
cg

*There is sometimes confusion that I, Cystic Gal, do not support the CFF because I often write that I believe that they do not adequately serve the adult CF population. I don' think they do, but that's only because they haven't had to! It is a "growing pain" of the organization because people like Pete, myself and all you readers are kickin' ass and takin' CF names and living until you have problems like osteoporosis and menopause. Rock on! In the meantime, the CFF struggles to find ways to keep us involved in this new germ-afraid, internet-based CF culture. I want to help them, help us, help them. You dig? That's all. I still raise and donate money to the CFF in a variety of ways.


Friday, July 16, 2010

offline til sunday

Yet another mystery visitor in town for Cystic Gal, though I have a post all cued up to go for Sunday. So, I will be absent from the blogosphere, barring any BIG NEWS for which you will be promptly e-notified. I had a red-letter day in the professional arena, and I present to you, as a celebration of my red-letter-professional-day today . . .

THE TOP TEN REASONS THAT THEATRE IS LIKE CYSTIC FIBROSIS:


1. Most of the people involved are broke ($) most of the time, or worry about the next time that they will be unexpectedly broke, thus behave like they are totally broke ALL of the time.

2. Most of the people have taken a job, or are currently working a job, just for the benefits, and unlike their counterparts in the outside world, they do not pretend that there is any other reason that they are working these jobs. They may even say at a job interview, "I really only need to work enough hours to get your health plan," [smile.]

3. It is totally acceptable in both arenas to have really bizarre sleep habits. If you complain about wanting to go to bed at a reasonable hour to avoid some type of task, you will probably not fit in either of these communities. It is also totally acceptable to have weirdly scheduled other bedroom habits, but I will not elaborate. ... i.e. "2 a.m.? That's the 10 p.m. of normal people! Wake up!"

4. I am not going to say that the line between prescription and "as-prescribed" is often blurred, but I am going to say that neither communities are filled with people who strictly adhere to anything written on a sticky label. Broke your ankle? The show must go on! -- Can't sleep? Can't I take both of these?!

5. There is a lot of blatant e-self-promotion / e-self-congratulation, e-self-pity in both of these communities.

6.  I'm not saying that I, personally, have a problem controlling MY emotions, but I am saying that the members of both communities have a flair for midnight emails, soap-box rhetoric in professional environments, and general "are you talking to ME?" behaviors. And if these events could be on video, all the better.

7. Both communities are like the mafia - once you're in, you're IN. But there are also a lot of weird fakers in both communities...weird but true.

8.  Both communities refer to their spouses/partners as "normal" if they are not members of the same community. i.e. "My husband couldn't make it to the matinee, he has a normal job," "My wife's copays are really low, she's normal."

9. Members of both communities are publicly discouraged from partnering off with other members of the same community - and when they do couple off, it is either 100% awesome or a total fucking nightmare that everyone has to hear about for years and years. *See point 5 above.

10. I am in both communities!! And before I get the hate-mail, I totally ascribe to all of the points above. ;) Winky face.

*NOTE: Please see CG disclaimers "What's-A-Mattah-You?" if you have a freakin' problem with this list, okay?

have a great weekend!!

Thursday, July 15, 2010

Winners Announced! CF Poetry Contest, "Putting it in Words"

Announcing the Winners

of the First Annual

Patient Press Poetry Contest

for Cystic Fibrosis


"Putting it in Words"


First, on behalf of Kathleen Rooney, Theresa Peters and myself, I would like to offer a great congratulation to each of the contest entries.

The judges had great difficulty deciding on the winners of the contest, and found all of the entries to be unique, honest and brave in their telling of the CF story. I sincerely hope that you each keep writing, and submitting to Patient Press and other publications, as well as publishing your amazing work on your blogs, on CysticLife, and your personal web-pages.


With great thanks,


Mary ElizaBeth Peters

Founding Director, Patient Press

PLEASE VISIT PATIENT PRESS, LLC TO SEE THE LIST OF WINNERS AND READ THEIR POEMS: HTTP://PATIENTPRESS.BLOGSPOT.COM

Tuesday, July 13, 2010

My Child Can't Swallow Pills !

This is an informative CG Public Service Announcement to show you the horrifying truth about what will happen to CF children who don't swallow their pills properly with water or milk. Be warned, this video contains graphic pudding imagery.

video

The actual message of this video is that even though I tried my whole life to swallow pills with water like a grown-up person, and even though I literally had to attend something called "Tongue Thrust Therapy" to correct my "dysfunctional swallowing" for which I endured several forms of harassment by my two teenage siblings, and even though I am now about to be 30 -- twice a day I take all my pills in a pudding cup. That's the only way they go down. When pressed, I can take one or two pills with water, but other than that, I swallow them with solid foods during meals.

SUCCINCT MESSAGE: Don't sweat the small stuff. Swallowing pills . . . very small stuff (especially when the smalls stuff is a BIG pill or ten!)

cg

Today was some crazy beans, well not really.

I am 'zosted today. That is code for exhausted. I have realized that my blog is best read aloud. Be advised.

Today I went to brekky with my pal C-Teach and his baby B-baby, who I adore. Then, I went to Staples to buy envelopes appropriate to

MAIL MY T-SHIRTS!

Then, I discovered that mailing t-shirts will be my cardio for the day.
Also, I had fun writing GERM ALERT!! signs on the envelops of CFers and post-TXers-- "You bettah clean yo shirt! Eww...it's germie!!" etc

The point of this email is that for no reason in particular I am so f tired today that I can't f believe it. I had a brief but lovely email correspondence with the good Dr. U-Bird, who is trying to solve the Mystery of Cystic Gal's Iron Level, which he referred to as "a very boring mystery." - Indeed.  I wish there were exciting transplant-related mysteries going on in my body. Then again, perhaps I should bite my tongue.

I'm going to do a second, informative post for parents momentarily . . . just you watch!!

Goodnight. Any thoughts on the sleepies?

cg

Sunday, July 11, 2010

This Weekend Rocked My Socks

Top Ten Reasons The Weekend Rocked My Socks
in no particular order.

1. Surprise visit from one of my best buddies in the whole wide world!

2. Re-watching a wonderful though dark dark movie, followed by great discussion.

3. "Bethenny Getting Married" is the best show on t.v. I made my male buddy watch this show and was hoping for a funnier sample episode, as though it was physically possible to get him watching this show of his own free will. Ah well, it wasn't funny, but he endured THE wedding episode and I thoroughly enjoyed it. He, at the very minimum, pretended to enjoy it, and this was satisfactory for all parties. Side note: I had to watch that Lebron James shit-show DECISION and nearly cried over those poor kids at the Boys and Girls Club who were totally played out by that a-hole on live tv. Who keeps kids out on a weeknight to tell them bad news and make them cry? Poor, poor taste. And Lebron, you're not all that. I didn't even know you're name before this weekend. Bethenny Frankel would never have pulled a stunt so cruel. 2 points for Bethenny. I hope those kids cried or said mean things to "the King" for his a-holiness.

Back to the list . . . of Top Ten Reasons This Weekend Rocked My Socks . . .

4. Thai. Food. With. Leftovers.

5. Peapod delivery prior to my pal's arrival provided the peace that only a full fridge of pudding cups, avocados, cheese and cheese-related products, and an entire corner of my kitchen I call "the beverage center" full of all sorts of hydration for my salty bod- made for a wonderful tumyurful time.

6. Have I yet mentioned NY Deli Pizza in my neighborhood that is so very very very college-style cheap, and yet so very very very Boston-style yummy Italian food? 'nuf said.

7. Houseguests + Open Refusal to actually cook for them = Sweet Relief.

8. Helped work on the draft of play that woke up my director brain and my playwright brain.

9. Took some advice from CFFatBoy and explored a new webhosting service, and now think about moving my "real" yet unlaunched website over to it! Oh yeah, and got my second official web client!

10. Seeing the people you love : Best ever.

11. BONUS: Managed to do all my meds, take my bipap naps, and get plenty of sleepy time sleep.

Oh no wait. One day, I forgot my bipap nap but that was because of the uninteresting transplant appointment I had to attend all afternoon, and also forgot, on the same day, to drink my afternoon cup of coffee- HEADACHE CITY. Thank goodness for my bipap. To bed for me! Both then, and now!

12. DOUBLE BONUS SHOUT-OUT: Extra doting by B-Kitty who has taken a new dislike to visitors. GTFO, she meowed. She spent today reclaiming all "infected" furniture and generally meowing in my face. Oh wait, the second part of that is not really news.

13. NEWSINESS: My shirts arrived!!!! Or shall I say, YOUR shirts arrived! The luck keeps coming. Every day, a lucky thing so far.

g'night! party hard. sleep it off.
cg

Friday, July 9, 2010

Even More Famouser

Today on WNPR Connecticut, the producers ran an hour-long story about CF, covering 3 patients: Connor, a 16 year old patient in need of a liver transplant;
Brian, a 29 year old patient in end-stage lung disease who is opting against transplant;
ME, 29 year old transplant-seeking me!

The part of the broadcast about me starts about 25 minutes in, but I encourage you to listen to the whole story because the beginning, focusing on Connor's story, is moving and inspiring- and for those CFers reading, he reminds me of my teenage self.

Here:
http://www.yourpublicmedia.org/content/wnpr/where-we-live-living-cystic-fibrosis

Other than that, I'm having a great weekend, and you have one too! ctfo

xxoo,
cg

Wednesday, July 7, 2010

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!

Tuesday, July 6, 2010

"It's Gettin' Hot In Here, so what?, So Take Off All Your Clothes"


Bet that title got your attention. Sorry, no naked shots today. But this one of my dear B-Kitty^ and her new companion, fresh out my cleaned-out closet that was full of drama-teacher-related-goodies. She seems to have made friends with little dog dog there, and dragged him out of my bedroom and into the kitchen to lay on the cold linoleum floor. I am not sure what the status of their relationship is, as she told me that they are "keepin' it loose," so- you know.

A special apology to UnknownFox as I think he was hoping to have some sort of pet-of-a-CFer-online-affair with B-Kitty. She'll hollah back when she's ready.

On to the real subject of this blog.... ME.

It's hotter than Beezus and Ramona out here in New England, and I, like a dumbass, did not schedule my friendly handyMan to put in my A/C unitS until tomorrow a.m. STUPPIE STUPPIE RA-TA-TOOYIE. ooh well. I'll survive. I made a video today for my docu-diary about how everyone asks if the heat bothers me, if allergies bother me, if smog bothers me, or humidity - I think at this point- my breathing sucks so hard that you know- nothing really bothers me per se, because it even the best air blows. Ha ha, get it- the air blows?!

I offer you this hilarious and informative video regarding the 4th of July-y. Small brief cameo by one of my most famous friends, JO^.


video


video

"Party like it's your last,"
CG

Sunday, July 4, 2010

4th Was Awesome!



Maybe uploadin' some videos, maybe not . . . I am too sleepy tired to write a big long post (which is usually the curse for me writing a twenty pager), but I will give you the highlight reel and leave out the lowlight reel, if there is such a thing- out takes? I'm leaving those outtakes OUT.

Frideee: oh oh oh nevermind I want to start with Thursday . . .

Thursday: Had a great chat with my colleague CB (the cb)^ about work that starts TOMORROW, and had some ideas for said work. Worked on these ideas. Gloriously happy to be having ideas that are related in any way to the word "work."

Frideee: Met with CB (the cb) at said place of business to go over said creative ideas and generally pretend to overtake the planet / place of business. Also ran into old colleague- hugs all around! Watched Friday Night Lights in my new Tim-Riggins-approved t-shirt, sent to me direct from Hollywood insider MK (on staff at Friday Night Lights, and not just getting the coffee, either!)

Saturdee: Slept in late and boy did I deserve it! Typie typie related to creative endeavors. Went out on a great non-date with my girl T-Money^, to celebrate our Independence from all things. Including, you know, dudes. Oddly enough, we were surrounded by dudes while doing this. Wore a cute dress.

Sunday: Ice Cream American Adventure! with JO. So wonderful and yummyurful. Now, babysitting poor B-Kitty as she is a-scared of the a-fireworks and is a-freakin'-out. Thank God she's not a dog. She would be barking up a storm. Instead, she is a-whimpering.

Tomorrow, sleeping in while all you working schlubs and undisclosed location are bright eyed, bushy tailed, and hopefully have time to get to Breuggers! If not, send MO^ she's the best. But you have to buy her coffee, at the least!

Goodnight, CG


Friday, July 2, 2010

40,000 UNIQUE VISITORS!!!!!!!!

40,000 unique computers
and probably human beings
have viewed Cystic Gal!

I am so very grateful!!


Statcounter tells me that the 40,000th UNIQUE READER was from

Newnan, Georgia, United States

CONGRATULATIONS, NEWNAN!

I feel compelled to, Seinfeld-style, also say, Hellooooo, Newnan!

Please also enjoy my new fave-o banner image from my first dry run. Now that's one casual sexy foot that's ready to give it a-go again!

xxoo, cg

Thursday, July 1, 2010

Ten Ways I Celebrated Life This Week

The best way, I believe, to honor the loss of a comrade, is to celebrate life. I remember when my dear friend A-dirrie^ lost her father Roger, that her family held a Celebration of Life. This was the first time in my life that I had heard of such a thing - the name and focus was not something that fit with my prior losses. In brief as I must go to bed, here are . . .

Ten Ways to Celebrate Life

1. Have an impromptu party. Wake up in the morning and decide to invite all your besties over. See who shows up! DO NOT CLEAN THE HOUSE. No one cares.

2. Put on a crazy song or 5 (as many as it takes to warm up to the idea) and dance around the house while scantily clad, Risky Business-style.

3. Put on some loud music and go for a drive with all the windows open, and try to sing at the top of your lungs. If you're on 02, enjoy getting followed by a police man who perhaps thinks you're some kind of thug, and then pulls up next to you and looks confused. Thug life y'all.

4. Wear an outfit that you are saving or usually save for something special, to go do something unspecial. You'll feel so very special.

5. Tell everyone YOU HAVE A GREAT DAY! and really mean it. The Southerners have this one right- people really appreciate it, and some of them actually start turning the wheels, "Maybe I will have a good day!"

6. Spend some very special time with your pet. This might involve McDonald's French Fries, and a porch, AND a porch-party.

7. Instant message your old homies and see what's up with them. You would not BELIEVE what is going on with people!

8. Take stupid pictures of yourself and share them with people. People really appreciate possessing stupid pictures of their friends.Think of the last time you got a stupid picture of a friend. Did you delete, ever?

9. Do something you've always wanted to do, that you would get no reward for. Volunteer somewhere, do something extra, do something that's a crazy hassle. Do a good deed, already, FFS!

10. Count your blessings and know that if you have even one, you should realize that you're one of the luckiest people on earth. Especially if number one is your mommy.

BONUS: Eat something really nummy. Twice.

DOUBLE SPECIAL SHOUT-OUT BONUS: Call someone you love so very much, who you feel disconnected from, and say, "hey I feel disconnected, and I want to fix that right very now," even if it's scary. FULL DISCLOSURE: I was on the receiving end of this one :)
--
~CG