Wednesday, June 30, 2010
Tuesday, June 29, 2010
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).
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
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
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
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/
Friday, June 25, 2010
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):
Thursday, June 24, 2010
Tuesday, June 22, 2010
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 :)
p.s. Feel free to email me at CysticGal@Gmail.com with any questions.
Monday, June 21, 2010
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!!
Sunday, June 20, 2010
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:
Lymphangiomatosis & Gorham's Disease Foundation
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
Saturday, June 19, 2010
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.
Friday, June 18, 2010
Thursday, June 17, 2010
Can a sister get a sponsorship for the blog already :) All this name dropping!
Tuesday, June 15, 2010
Monday, June 14, 2010
Sunday, June 13, 2010
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.
You can't take it with you :: The SouthtownStar :: Guest Columnists
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
Thursday, June 10, 2010
Wednesday, June 9, 2010
Tuesday, June 8, 2010
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.
Monday, June 7, 2010
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
Saturday, June 5, 2010
Friday, June 4, 2010
Thursday, June 3, 2010
Wednesday, June 2, 2010
Tuesday, June 1, 2010
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.)
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: