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Showing posts from June, 2010

Happy Bloggiversary, Dear Cystic Gal, Happy Bloggiversary, To-oooooooo, Meeeeeeeee!

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I missed my own g-darn Bloggiversary! In celebration of this, I offer you a look at my very first blog post of ever, and I thank you, most humbly, for what "Cystic Gal" has become.  Oh yeah, and 2 more hours (or 5 if you're a west-coaster) to enter the Patient Press Poetry Contest!   and a limited number of "Cystic Gal" and Guy T-shirts Still Available! Sold three today. To ship 7/12! Saturday, June 13, 2009 The First Day of the Rest of Your Blog Dear World, I am the Cystic Gal, and I will be spending my summer sharing my thoughts on CF and life with you. Like a lot of CF patients, I have always had a dream of people understanding my story - so here is the place where I will tell it. I thank you in advance for reading it! Please feel free to comment or share this blog with other patients, friends, or any interested reader. Thanks!  CG (Cystic Gal)

sleepy sleepy

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Thank you to all who read my long and meandering post last night, and for trying to understand it - like I said in the post, I'm not a ball of sad, I just have a lot on my mind- and I started this blog about a year ago (hey, I should check for my bloggiversary!), primarily as a tool to express my anxieties and concerns about my illness. The blog has taken on a whole other crazy charactered life, and for that I am very grateful and surprised all the time.   I encourage you, tonight, to read this post, on the eve of the last day of the Patient Press poetry contest:  http://unknowncystic.wordpress.com/2010/05/31/four-bad-ideas-for-cgs-poetry-contest-and-one-from-fox/  if you wanna write a poem, but feel unqaulified. UnknownCystic shows you that anyone, ANY FRIGGIN ONE can write a poem, and you can even use his ideas. He's out of blog for the week. He'll never know. In the words of Unkown Cystic's pet, Unknown Fox,  "Party like it's your last. Fox out.&qu

Sunrise, Sunset. Sunrise, Sunset

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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 di

The Sun Also Rises

I am working on a blog about the Top Ten Reasons I Believe in Angels. But its takin' awhile. So instead, tonight, I leave you with this post. I did an interview with the fabulous Catie Talarsky from WNPR Connecticut, and the show "Where We Live," which is ironic because, you know, I don't live there- but I think they mean the grander sense of WE. You know, NPR-style. We talked through so many topics in 2 hours! Some of those topics are covered in this article I wrote for the CF Newswire. Take a peak, and look forward to another post tomorrow. Through the sadness of my two prior posts and all the news, it was actually a quite lovely weekend of seeing old friends from my old OLD job, (like 2005-2008 style), talking shop with theatre folks, having sparkling this and that on my front porch, and sleeping a lot. Cystic Gal: The gal, the myth, the legend (ok, that was not really the title, but I'm all anonymous up in here lately!) I am proud to be part of a g

Hearts are broken, but souls are at peace

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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 C

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.

TV this week is Sofa King Awesome.

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In case you missed it, its a very Cystic Gal themed week on the teeeveeee! Tonight, I missed these awesome two cystic gals on America's Got Talent- I was watching and fell asleep on my bipap!! Irony. Tomorrow night, Thursday, on ABC- "Boston Med"- first episode of this documentary series by the same people who did "Hopkins" last summer - and who is the star of the first episode? A lung transplant patient and one of my very own surgeons, Dr. Camp. I have heard through the grapevine that it is a very moving episode that shows, in action, what is at stake in the timeline on the night of a transplant! I hope you watch! And P.S. Remember, you can buy your Cystic Gal, Guy or Kid shirt HERE - you can buy different sizes / colors than your order- there's enough to go around!
Testing my new phone!

Cystic Gal T-Shirts- Time to Buy!

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Having trouble with the online form? You can email me a cysticgal@gmail.com for my USPS address, and send a regular check. xxoo, cg Yay! The time has come that you can purchase your Cystic Gal T-Shirt! So exciting!!! I will be ordering the shirts on 6/28, so make your purchase quickly :) ! I have added an option to make a small donation to my "Cystic Gal" transplant fund, which will help offset the travel and lodging expenses if I have my transplant in Cleveland, as well as my out-of-network deductible. No pressure to donate! I am happy to feel so very supported by my family, friends and the CF / transplant community, and to send the other shirts at-cost. It makes me so happy that so many people ordered the shirts, read the blog, and support me in my times of happiness, craziness and every other "ness." Thank you from the bottom of my broken old lungs :) Love, CG p.s. Feel free to email me at CysticGal@Gmail.com with any questions. Options! T-Shirt Only :) $14.0

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 rocke
Ha. I just used a whole tank of hospital oxygen Waiting. Hope Hope Hope people. Come on! :)
Waiting for final word by 7 45 they said.
I want cheese burger
God is really great. Both seriously, and on the gift of cute boy nurses so i'm on good non crazy behavior. No news yet.
Got another call as backup!

Ways to Give Back!

I am starting a new series on CG that will list organizations in need, mostly CF and transplant related, but others, too. This blog is patient-advocacy centered (in, obviously, all the crizzaazzyyyy forms that means to me, the author:) I like to highlight organizations that directly benefit patients and families in need, and those that specifically attempt to make their sources of aid easy to obtain for patients and families in crisis who might not have time to copy their tax records in triplicate, for example. These organizations, often, operate on a good-will policy toward patients and families and often have the hardest time weathering economic storms. Usually off the radar of large corporations, smaller patient advocacy groups are usually quite dependent on small, individual donations. I also like to highlight organizations that are "grass roots" in that they are run completely by the families of patients, and by patients themselves. These mothers, fathers, husbands, wive

Happy Father's Day

Top Ten Reasons that Cystic Dad is Awesome 1. He is awesome. He expresses his awesomeness in the categories of holiday preparedness; matching outfit procurement; music listening and procurement; gadget buying; and general hilarity. 2. He has good taste in music, if we can overlook the whole Jimmy Buffett phase he went through from 1998-2008. He plays music all the time. 3. He is a fun guy, and a funny guy. He is very social, and likes to hear and tell funny stories, which brings me to number . . . 4. He tells a good story. Not in that boring way that a lot of Dad's tell the same stories over and over. He tells good stories and if they are repeats, they haven't been repeated in years so they're good to hear. 5. He is a very loyal person to family and friends. My dad is like the mafia. Once you're in, you're in. 6. He wins lawn mower races. Well, he won ONE lawn mower race. 7. He competes in lawn mower races, even though he might lose. He is a great loser. 8.

hilarious image from my friend @unknowncystic

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His imaginary friend, Fox, took over last night, and this was his plan.

T-Shirt Price Reduction, Kids Sizes Too

This just in ! Cystic Gal or Guy T-Shirts will only be $14! Also, I'm ordering kids' sizes in the gray! Ages 2+. Sizes Youth Extra Small through Youth Extra Large. Yay! Email me at cysticgal@gmail.com if you want a kid's shirt - they aren't listed on the order form. FAQ: YES, Girls, can order the gray t-shirts. Keep in mind that they are standard t-shirt cut, so you might want to order a size smaller than the blouses or shirts you buy at, say Ann Taylor Loft :) Can a sister get a sponsorship for the blog already :) All this name dropping! Here's the LINK: http://cysticgal.blogspot.com/2010/05/t-shirt-time.html Regulars post later, Feelin' plurals, cg

Dear Transplant Process,

I am so over you. This relationship is not working for me. I try and I try and I try, and what do I get back? Not much.  You need to change your ways. Respectfully, Cystic Gal

Fwd:

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Cystic Gal's post will be up shortly  . . . She is on the bipap. Luv, Beckett T. Cat.

You can't take it with you :: The SouthtownStar :: Guest Columnists

"Cystic Gal" is more famous every day! Kathleen Rooney, famed and sometimes infamous author, publisher, and my personal hometown homie, wrote this wonderful article about . . . ME, and her experience visiting me in Boston a few weeks ago. The article is focused on promoting organ donation and exploring some of the practical matters in the pre-transplant process. I hope this article encourages more people to sign up as organ donors, and to encourage their family to do the same. An update on general news, I am feeling much better than yesterday. Please click the link below to see the article in The Southtown Star, by the Chicago Sun Times. cg You can't take it with you :: The SouthtownStar :: Guest Columnists ***************************** First visit to the blog? Learn about me and the blog by clicking HERE. Looking for a way to support your readership of "Cystic Gal," as well as my transplant fund? Click HERE. Looking for the Jill Zarin article that was original

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 2 ish and med delivery around 3 ish 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

I'm okie dokie after embo

Yo yo yo, I have another Guest Post lined up for tonight, but wanted to quickly say hi to the readers and let you know that I am doing well as of... about an hour ago, from my embolization. The procedure went very very well, and the Radiologist came in to tell me that I was apparently happy and talkative during the procedure. Hopefully, I didn't say any of the things written in HERE , the most famous of CG posts to date. They were able to embolize three areas of my lung that were bleeding, and I have been pretty good in the not-bleeding department since.

CysticDad Guest Blog - GIVING IT UP

CG asked me to guest blog for her tonight so I'm going to take advantage of the rare opportunity. First an update on CG. She had an embolism today to maybe finally stop these blasted lung bleeds. They cauterized three areas so maybe we have a handle on it. But she is alone, which leads into the remainder of the blog. Giving it up is not for wimps, sissies need not apply.

embolization today

Today, hopefully any time now, I'll be going down to Interventional Radiology for my embolization procedure, hopefully to end my lung bleeds forever until I get my new pair of lungs!!! Wish me luck and peaceful thoughts, and all good parts of sedation and none of the bad ones! Love, CG

Walk This Way

Okay, supposedly this is the track after Aerosmith's "Back in the Saddle Again." I have used that title and its variations too much, I had to think outside the Steven Tyler box. ...eww. So, yes. I'm ba-ack in the hospital 6 days after the last time, for bleeding. Last time, I was more jovial thinking maybe I wouldn't leave the joint without my new airbags. This time, THIS BP IS NOT LEAVING UNTIL THEY PLUG THE F'ING LEAK. (bp=cystic gal's real initials; the leak=in my lung, not under the sea.)
'I would marry you for a mac donalds double cheese burger and fries!' i text to t-money. I'm back in the hospital, not for good news.

"Things CFers Do" from CFFatBoy.com

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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. You have 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 some

A CF Fantasy

Please read this apparent quick screen-play idea starring CysticGal (me), RunSickBoyRun (Ronnie,) and UnknownCystic (Unknown!). It has an almost-flattering, somewhat satirical take on my CG ways and isms. http://unknowncystic.wordpress.com/2010/05/12/fox-ventures-out-for-a-day-trip/ ********* All the most important CG links! Cystic Gal T-Shirts! Cystic Fibrosis Poetry Contest ! Order my poetry book, Unto the East: Words in Waiting (for transplant)!

Story of, and Tips on, My First Dry Run for Transplant!!

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I knew it was about to be my winning season! Hello Readers! First off, let me thank you for your readership and support in these last few days. Second, let me apologize to any of you who did not recieve the non-news of my first call for transplant, which I did not receive. Third, I am so tired that I have to go bed. This must not be a long post but I wanted to tell you the brief story.

All the links you ever looked for!

Test- all the most important CG links! Cystic Gal T-Shirts! Cystic Fibrosis Poetry Contest ! Order my poetry book, Unto the East: Words in Waiting (for transplant)!

Unknown Cystic's ORIGINAL unpoetry... dedicated to me!

http://unknowncystic.wordpress.com/2010/05/25/a-poem-for-cystic-gal/ Read this. It is Fun-ny.
It's a no go. Going home. Not to bad of am experience. Tired. More tomorrow. Love love and thanks for support!
I am still here. Still no news. I am laying in my er curtain area across from tall, muscley, bald by choice guy. 9 hours. Are you kidding me, god?
P.s. They will not give me cheese burger.
still no news here. Listening to song called swimming to the other side to remind myself of the donor's great journey. Can't sleep but That,s not new. Love cg

Holy Canoli Cystic Gal is the Backup: By Cystic Lady

Tonight at 6:36 PM Cystic Gal was called by Brigham & Women's as the backup for lung transplant.  She was called into the hospital soon after and is accompanied by a friend, waiting to see if 1) the surgery is a go, and 2) the first person in line is not able to have the surgery.  It's hard to say how it will turn out, but please send Cystic Gal the good feelings and energy and prayers or whatever you like to send her.  She has had a bunch of blood work.  In a related story, Cystic Mommy fell down Monday on a bike ride with Cystic Lady (me) and broke her right wrist.  She is right-handed.  She will have surgery, probably Thursday to fix it.  So, if the Cystic Gal lung transplant is a go, Cystic Dad will fly to Boston on the earliest flight at 6:00 AM tomorrow, and I will take care of Cystic Mommy's surgery.  Can you believe it!  I can, actually today when I was on chat with L-UberComputer, I mentioned this very thing.  I might have willed it!  As of this post there

Fwd: wbur.org: Demand Still Overwhelms Supply Of Organs In New England

Story today on WBUR regarding organ donation shortage in New England. Interestingly, the woman featured (not me) has moved here because her antibodies match this area better, whereas I went looking to the midwest where mine might match better. We both wait! Check it out! cg ---------- Forwarded message ---------- From: Date: Tue, Jun 1, 2010 at 5:00 PM Subject: wbur.org : Demand Still Overwhelms Supply Of Organs In New England To: sent you this story from wbur.org : http://www.wbur.org/2010/06/01/organ-transplant Message : Yay!

Unknown Cystic's Misadventures in Poetry

The below is a post from one of my bestest bloggies, UnknownCystic, who wrote co-authored the CF Smackdown: Boys vs. Girls with me. He is high-larious, and I thought you would all enjoy his take on the poetry contest I'm hosting over at Patient Press . Please let this post remind you that you never know what or who the competition is - so you might as well enter! The full post and its images can be seen at http://unknowncystic.wordpress.com/ Four Bad Ideas for CG’s Poetry Contest (and one from Fox) May 31, 2010 — unknowncystic As the three of you who read my recent poem for Cystic Gal know, I’ll never make a living writing poetry. What you may not know is that C Gal is having a poetry contest. You can enter at this site: http://patientpress.blogspot.com/ I thought I’d enter. However, when I sat down to type some “badass, burning up the page” verse, I didn’t make it much farther than the titles. Here are the four poems I contemplated writing:

Thank you for ordering a Cystic Gal T!

You purchase and support are greatly appreciated! Please email me at cysticgal@gmail.com with any questions or comments! I can't wait for you to wear your shirt!