Wednesday, June 30, 2010

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

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

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."

Tuesday, June 29, 2010

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:

Monday, June 28, 2010

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 generation of CF patients that is always right in pace with science – When I was born in 1980, the life expectancy for a child with CF was about 10 years old. Now that I’m almost 30, it’s about 37. This strange race against time and facts has given CF patients who are my age a willfulness, determination, and almost arrogance in their ability to beat this disease. For better or worse, I was handed this cocky attitude by my parents, who never let CF scare them into raising their children differently. I was always expected to grow up strong, go to the best college I could get into, and start a career. I am grateful to have surpassed even these childhood dreams by earning my Master’s Degree, moving to Boston, and now approaching my 30th birthday. I can’t wait!


Getting to age 30 has not been without struggles. I had much worse health in adolescence. I missed a great deal of high school, but still maintained good grades by continuing my work diligently from home, and attending classes enough to remain involved with my high school’s drama program. I learned that I had to keep my health up to par in order to do what I loved. Though I was not a competitive athlete in high school, I swam for my main form of exercise. At school, I performed in plays while maintaining a crazy, active lifestyle like any so-called normal teenager. In the summers, I swam and worked as a lifeguard and swim instructor through college.

Here’s the catch- I’m no star athlete. I’m no marathon runner. I don’t even like to exercise in front of other people. However, I work out every day. I think it’s important for CFers to know that exercise is a necessary part of taking care of yourself, but it’s not an all or nothing proposition. You don’t have to prove to the world that you’re overcoming your disease through extreme exercise goals. You just have to take care of yourself and live the active lifestyle that you choose.


Some people told me that I was crazy to pursue a career in the theatre – the crazy schedules, the late nights, the unpredictable income. However, theatre is my passion. I found that pursuing my true passion, with all of its active demands, was actually the best thing for me, personally and even physically. Now, I am able to do much of my work as a playwright, director or producer from the first row of a theatre if I need to - so I can be as active or passive as I need to be on a given day, while still living my passion.


I am also a poet, and invite you to check out my new publishing group, Patient Press, at patientpress.blogspot.com. I wrote this poem, No Dragon Slayer, during a fundraiser for the Cystic Fibrosis Foundation called “Unleash Your Story.”


No Dragon Slayer

© 2010 MEP


I am a dragon.


I fly through the sky though heavy with wings like steel, never tiring.

I land upon the sea perched on delicate feet, never sinking.

I plunge to the deepest depth of the ocean, never gasping.

I do not need to breathe like you.

I do no need to breathe.


I am a green white pink white purple white dragon.

I float into clouds and am invisible.

I climb among trees and am a giant.

I balance on the mountaintop only to witness.

I do not need to rest like you.

I do not need to rest.


I am a mythical, imaginary, remembered and forgotten dragon.

I do not fly among you, but I would.

I may not fly forever, but I could.

I will not fly in silence, though I should.

I am not defeated by you.

I am not defeated.


I am a dragon. .

# (c) MEP


At Patient Press, we are coordinating a poetry contest: "Putting It In Words: Poems About Cystic Fibrosis.” The contest is open to all ages, Kindergarten through 110 years old! We like funny poems. We like sad poems. We like goofy poems. We like angry poems. We like poems. You can win a nifty t-shirt and a small cash prize! WINNERS will be announced on the Patient Press Blog and on CysticLife.org. Check it out! http://patientpress.blogspot.com/

-CG


Friday, June 25, 2010

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):

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.

Thursday, June 24, 2010

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.

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!



Tuesday, June 22, 2010

Cystic Gal T-Shirts- Time to Buy!

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 Size (Women's Sizes)













Options!
T-Shirt Size (Unisex/Standard T-Shirt Sizes)




Monday, June 21, 2010

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
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!

Sunday, June 20, 2010

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, wives and caregivers are fighting their illness every day, and also trying to run a small not-for-profit? Talk about two of the hardest jobs on earth. They need our help, either financially, or as volunteers.

I encourage any one who can, to donate to the organizations I feature here. You can also help out by writing "no acknowledgment necessary," if you make a small donation. This way, the organization will not spend $1 of your $10 donation on the letterhead, envelope, stamp, and time of sending you a thank you.

I hope to start with this list:

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

First Up: Angel Flight, and particularly, Angel Flight Northeast

Angel Flight is an organization near to my heart because I have already benefited from their services in my planning for travel to Cleveland Clinic. They have been so wonderful to work with, so kind, and so charitable in providing transportation to patients and their caregivers for medically necessary travel. As many of you know, the costs of the transplant process are astronomical, even with *good* health insurance, and travel/lodging expenses are almost never covered by health insurance companies.

From Angel Flight's Website:

Who is Angel Flight NE?

We are a volunteer corps of over 1,000 private pilots and "Earth Angels" who combine our love of flying with the spirit of grassroots volunteerism by flying patients and their families to the critical health care they need. We provide air transportation in private aircraft by volunteer pilots so that children and adults may access life saving medical care free of charge.

Angel Flight Northeast is a 501 (c) (3) non-profit, tax-exempt organization that provides free air transportation to patients whose financial resources would not otherwise enable them to receive treatment or diagnosis, or who may live in rural areas without access to commercial airlines.

We are also a vital mode of transportation for organs, blood and for patients awaiting organ transplants. We also make compassion flights and provide air care wherever there is a compelling human need. Through our membership in Air Care Alliance, we can arrange flights throughout most of the country and Canada. Angel Flight Northeast flies extensively in the Northeast portion of the country.
--
Ways to Give and Support AFNE

Angels like you are needed to help AFNE continue to realize our dream of providing access to quality health care for every man, woman and child in the U.S. Your investment in Angel Flight--whether it be finances, time, or services--will go directly to helping us help our patients, many of whom turn to us for help at the most frightening and critical time of their lives. Learn more.

> Make a Contribution Online
Our online giving process is fast, easy, and secure. You can even donate in memory of a loved one or in honor of a birthday, anniversary or special occasion of a family member or friend.

* Donate to our General fund.

> Make a Contribution by Telephone

Please call our office at (978) 794-6868, Monday - Friday, 8:30 AM - 5:00 PM Eastern Time

> Make a Contribution via Postal Mail

Please make checks payable to "Angel Flight NE" and mail to:

Angel Flight NE
Lawrence Municipal Airport
492 Sutton Street
North Andover, MA 01845

If your gift is in memory of or in honor of an individual, please include the name and address of the person who is to be notified.

Read all their information and more ways to give, including volunteer-ism, at

http://www.angelflightne.org/

Saturday, June 19, 2010

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. He gives good advice, and is a good decision-maker, action-taker in a crisis. He reads lots of those stupid books like "The 6 minute millionaire," and "The Four Hour
Work Week," and shares their nuggets of wisdom. He also is the guy to call or text when the s*** goes down. He will be like, "Okay, we'll make a plan here and I will call you back. We got this."- This is true if you're about to be homeless or you cut your foot off in a freak potato sack race incident. He rolls with the punches, and has a lot of experience in the punch department.

9. He has stories that will scare you, for life, away from fireworks, motorcycles, dangerous driving, trains and train tracks, riding a bike with sandals on, swimming while drinking, or swimming alone. It took me and Cystic Lady a few adult years to piece together our shared fear of these activities, but we think we have the idea. One way to keep your kids safe from random acts of danger: tell them horrifying true stories at as early of an age as they can contemplate said dangerous behaviors.

10.  He knows how to take a good nap, and instilled great napping values in his children. Some people think of adults taking naps as a sign of laziness, or influenza. Not my dad. A nap is just what we would call, "Two O'Clock" in the Cystic Family.

BONUS! # 11. He is chivalrous. He and my brother have spoiled Cystic Mommy, Lady and myself to believe that we are physically incapable of mowing lawns, shoveling snow, taking out garbage, lifting or carrying of any sort, walking too far from a parking spot, -- and that generally if we stand around looking sorta helpless, someone will do something for us. I think this is a good thing but I sometimes wonder if CysticLady actually walks into doors that aren't opened for her in a timely fashion. I've never seen her with a broken nose, but . . . I'm still not convinced.


Thursday, June 17, 2010

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!


Regulars post later,
Feelin' plurals,
cg

Tuesday, June 15, 2010

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

Monday, June 14, 2010

Fwd:

Cystic Gal's post will be up shortly  . . . She is on the bipap.

Luv, Beckett T. Cat.

Sunday, June 13, 2010

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 originally posted for Saturday, June 12? Click HERE.

Friday, June 11, 2010

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.

Thursday, June 10, 2010

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

Wednesday, June 9, 2010

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.

Tuesday, June 8, 2010

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

Monday, June 7, 2010

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


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

Saturday, June 5, 2010

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)!


Friday, June 4, 2010

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



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.

Thursday, June 3, 2010

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.

Wednesday, June 2, 2010

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

Tuesday, June 1, 2010

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 is no new news, but I have the phone nearby. 

Transplant Woo, Cystic Gal Woo!  (Stolen and modified from an old chat when Sammy Sosa played in Chicago in the 90's.)

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!