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Showing posts from July, 2010
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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!

CysticGal Called Last Night

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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!

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 .

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 m

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 sur

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

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&#

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

It's official

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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?

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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 com

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

A Message from BecketTheCat

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

Email Schmeemail. Converse with me dammit!

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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: CysticFibrosisFoundatio

Ways to Give Back: A Party for Pete

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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

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 ha

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 Eliza Beth Peters Founding Director, Patient Press PLEASE VISIT PATIENT PRESS, LLC TO SEE THE LIST OF WINNERS AND READ THEIR POEMS: HTTP://PATIENTPRESS.BLOGSPOT.COM

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. 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 mom

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

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

No Whammies, No Whammies!

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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!

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

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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 bothe

4th Was Awesome!

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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!)

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

Ten Ways I Celebrated Life This Week

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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 out