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!

Video about Shirts and Bras and Packing

So I look a little silly in this video, as I have a strapless shirt on. But I assure you, I do have a shirt on!!

Port and a tube top? It must be summer! This was taken a few days ago when it was a hot day around here (75 degrees), and I had to have my port needle changed. I can't wait to not have to use my port, and then I'll have the durn thing taken out! Until then, this is my fashion statement for Spring 2010.

CG Smackdown: Boys versus Girls

Earlier this week, I was challenged by a fellow Fibro to compare our Cystic Adventures. The below is our result. Ever think the CG blog is too girly?! I didn't think so! But you be the judge. Read on . . .

CF BLOG THROWDOWN: BOYS VERSUS GIRLS

Are you ready for the CF Rumble in the Jungle?

In the pink corner, we have CysticGal, sensitive and kind, who adores pictures of bunnies and anything pink. She is loving, caring and the perfect model of CF womanhood – A poet of the highest order. And, fan of fuzzy animals and all things “chic.”

In the blue corner: me. I don’t take showers in the hospital; I smell of man musk most days. Raw, nasty and gross and 110 percent CF man. Defective chromosome and mucus-filled lungs ready to roll in my “Smokey and the Bandit” black Trans-Am.

Bring it on, "UnKnownCystic." Respect for showing up.

TEN QUESTIONS: Boys vs. Girls

1. What is your favorite thing to spit your sputum in?
CysticGal: I'd prefer you call it "yucky." I spit the yucky in a pretty blue cup.

UnknownCystic: An Old Milwaukee beer can so I can shoot it off a fence post later.

2. Things you'd like to say to your nimrod RT:

UnknownCystic: Is that my inert pulmozyme in your body-temperature-heated pants pocket? Or, are you just happy to see me?

CysticGal: If you hit my boob again, we're done.

3 What do you think about when you're at the gym:
CysticGal: That's right, I'm naturally thin and walk this slow on the treadmill. Suck it. And stop staring at me.

UnknownCystic: I don't like cadio or being a thin guy. No matter how many weights I lift, I won't look muscular. Where's the radioactive spider that turns me into Spiderman?

4.What excuse do you give to avoid taking the stairs?

UnknownCystic: Sorry, my knee is acting up again. Old bear-hunting injury. But we ate like kings that night. We ate like kings!

CysticGal: These heels are killing me! I'll meet you up there. (Said while wandering off toward the elevator.)

5. What is your biggest worry about your body?
CysticGal: That others will be jealous of my supermodel thin bod. Poor ladies!

UnknownCystic: I worry about the inside of my body. Don't want to be coughing up blood when I'm hanging with supermodels, do I? BTW, the bag over my head helps in those situations.

6. What is your most attractive CF-related quality?
CysticGal: My raspy voice gives me that Demi-Moore-esque quality... or is it that I'm sleeping with Ashton Kusher?

UnknownCystic: I have no attractive qualities, hence the bag over my head. CysticGal, digging your choice of Demi. I'll call you late one night for a . . . talk. You can call me . . . Ash, baby, Ash.

7. What would you change about your CF Clinic?

CysticGal: I'm not saying that it's okay to use prescription drugs for the wrong reasons, but I am saying I'd like to be high the whole time. I think its best for all involved.

UnknownCystic: My clinic experience will be similar to eating at Hooters. I want hot wings and ESPN in every exam room. The nurses, well, you get the idea. Oh, and can you tell the "high" woman in room 7 to pipe down.

8. What line of poetry best describes living with CF?

CysticGal: "A good day ain't got no rain, and a bad day is when I lie in the bed and I think of the things I might have been." I don't expect UC below to understand that. So I'll offer him this: "Genetics: It'll screw you every time." That is not poetry but just a phrase I like to incorporate into all of my explanations of CF.

UnknownCystic: This is a chick question. I read "Hunting Dog Monthly." But here's one from my hardhat to impress. And it's from a woman, Sylvia Plath. "Her blacks crackle and drag." I think that's what she wrote, but I'm a dude and too lazy to look it up.

9. Who would you be if you didn't have CF?
CysticGal: Clearly, Angelina Jolie. Without all the adulterous and bizarro family stuff. Just the kids and the famous actress and Brad-Pitt-as-husband parts. Oh yeah, and she's dead sexy- like me. I'm sure if you asked Angelina Jolie who she would be if she had CF, she'd say, "Cystic Gal."
UnknownCystic: That's funny, CysticGal, because I'd be Brad Pitt. Actually, I don't like Angelina's tattoos. I'd be Brad Pitt but with my wonderful wife and daughter. Sorry, love is love and hard to find.
CysticGal: Awwww, that's sweet. And lame! Just kidding.

10. What career would you have if you didn't have CF?

CysticGal: If CF exists, I would be a child-life specialist at a hospital. I think that job is the best but I can't really do it because of all the infection control issues. If CF doesn't exist, I would be . . . ME but with lungs that worked. I think I've done a pretty good job along with having CF. And maybe I'd be fat, which I wouldn't like, but, you know. Win some, lose some.

UnknownCystic: If CF exists, a scientist to help cure it. If CF doesn't exist, a Chippendale's dancer to help cure something else. Does anyone have change for a dollar?

All About the Yuckies: for the cystic gals

P.S. Pre-Script: Remember, it's not too late to order CysticGal's limited edition chapbook, "Unto the East," by clicking HERE.

Onward . . .

This posted to Ronnie's blog in response to a young woman's posting to him. I think this is an important issue for us to think about and perhaps offer advice to young cystic gals (copied below)

Tuesday, February 16, 2010

A Young Girl's Cry for Help

I thought I would re-post this question and response because it applies to so many of us...

Young Girl's Post:
Mods, feel free to move this, as I am a teenager, but I'm seeking advice that adults can help with. I have a feeling I've posted things like this before. In Jan, I was in the hospital, got a gtube..lungs went from 50% to 100%. Now, I am not sure..but I believe they are back at 50%. My weight has also dropped a few pounds because the machine was messing up. I don't know what to do with myself. I go into this cycle..hospital is great, but I don't do many of my meds at home. I can't keep doing this, I want to live a long life, and this isn't helping. I feel like crap, when I wake up I DREAD coughing because I know that I will be bringing a lot of stuff up..and many times I end up throwing up because of it. I have zero energy. I get out of breathe going up the stairs... At PE Thursday we I couldn't even run a full lap..I ran 1/4th, after that I felt horrible. What is wrong with me? Why does my mind not want to do these meds? I get so frustrated with myself..but I have no willpower.
>>

MY CG Response:

I hope this young woman in reading your comments, and I think you gave her some wonderful advice! I want to key in on one point she said, (paraphrasing) "I'm afraid to start coughing."- a lot of times, the truth is, doing treatments, coughing up stuff, getting out of breath in exercise, all of it- is painful, scary, and can even feel life-threatening. Even I am in a high stakes negotiation with my team about how many times per day I can do "forced coughing" maneuvers to bring up junk. It makes my 02 drop to the 60s and is very stressful on my body.

My point: looking back, I realized that this fear of the pain and panic associated with coughing fits was causing me to avoid them AT ANY COST. There were times in my life when I would avoid ever exercising around other people (including walking to my car, walking to a meeting at work, or pushing myself in rehearsal.) There were times when I did not formally exercise at home for weeks because of my fear of coughing. There were time when I avoided my medicines because they would make me cough so hard. Sounds great- right? Get through each day and cough LESS?

The problem: Avoiding coughing and specifically the admittedly gross, sometimes painful, usually exhausting process of coughing up yuckies - it's like avoiding crying. You wait and you wait and you wait and then you stub your tow and cry your eyes out in front of all your friends! If you avoid coughing, your lungs will get swampier and swampier, until you will experience even worse coughing fits that you will not have any control over- which will feed your fear again.

I think it's important that you think about how you feel about coughing- if you need to be angry or sad about it- or just admit that it's freaking exhausting and plan to cough up your junk and take a nap- so that you can get to be more compliant.

I think this issue is one of the least talked about realities in CF, particularly for girls who are not as (bear with me here . . .) likely to feel normally spitting out goobers. Doctors don't even enjoy talking about it that much and very little patient education seems to focus on it in post-adolescence.

It's a gross, exhausting, unsexy, un-dainty, nasty, sad, thing.

But you gotta do it. Every day.

Love, CG

So, what do you think?

One cystic gal's thoughts

This was posted by bloggy Piper, who has agreed (hope hope hopefully) to write the introduction to my chapbook, "Unto the East," which you can still order by filling out the form below! Order fast, 113 sold in one day!

These are some of Piper's thoughts on the waiting game that we are all in.

So, gals, tell me (you know, as book research as my printing deadline approaches):

What are you waiting for?

Friday, February 12, 2010

More Thoughts on Waiting

Note: the below text is a talk I gave last night at a wonderful CF fundraiser organized and chaired by a remarkable CF woman (and CF mom!) from one of the forums. She was kind enough to invite me to her event, and then asked that I share a few words about my story. I thought it fitting to repost here, but I have removed her name just to protect privacy.

L has given you all some great information about CF, but what I'd like to do now is tell you a story. And, like so many of my personal stories, this one begins in a doctor's office.

It was, I imagined, going to be a pretty routine clinic appointment. As I settled myself on the familiar exam table to await my doctor, I went over the specifics of this particular visit in my mind: PFTs down a point or two, might mean an oral antibiotic or some other slight tweak in the medication routine; my weight was too low, as always, so we might have to discuss the dreaded feeding tube issue once again; and otherwise nothing too remarkable. I swung my legs and fidgeted in the tiny clinic room, gearing up for what I knew was coming: the inevitable conversation about my increased need for IV antibiotics to fight infections in my lungs, and the implications of my decision to work full-time at a large law firm following my graduation from law school the previous May. It was now January of 2008, and while I sensed that things were changing with my CF, I had no idea just how much this seemingly run-of-the-mill clinic visit would change my life.

Transplant. It's a word most CFers are all too familiar with, at least as a concept if not as an actual reality. Since my teenage years, I had understood that lung transplant surgery was a last-resort option for people with advanced cystic fibrosis lung disease. I knew people who had undergone a transplant and had emerged smiling, full of life and healthy, vibrant breath supplied by their new lungs. But I was completely unprepared to hear the word applied to me and my disease, despite my personal understanding that my CF was progressing. And so, when my doctor took my hand and told me that she was recommending a referral for lung transplant evaluation, my first thought was, quite honestly, "for whom?" Because certainly she didn't mean me, the lawyer, or me, the daughter, sister, girlfriend, and friend. She couldn't mean me, the girl who loved to travel and be active and who adored her job. And then it hit me that she did, in fact, mean me, the CF patient.

It's funny how jarring news can sometimes work strange and wonderful things in my life, and it turned out that my referral for transplant was no exception to this rule. Immediately after learning the news, I began to seek out other CFers, figuring that I should get as many perspectives and as much support as possible during an otherwise confusing and difficult time. The issue, of course, was that CFers are rarely allowed to meet face-to-face because of the dangers of cross infection. A room full of CF patients might have offered me the support and help that I needed, but it would also be putting my health (and the health of others) in danger. But a chat room full of CF patients? Well, that's an entirely different story. And so it was that I stumbled into the online CF community, where I was lucky enough to meet L and others like her -- members of a unique collective of 30,000 + people in this country living with this disease, dependent on the medical advancements and new treatments made possible through the CFF and lung transplantation, and surviving on hope for a cure that suddenly seems not so far fetched thanks to cutting edge research and truly remarkable science. These were the people who helped coach me through my evaluation for lung transplant, who continue to support me as I've gotten sicker with CF, and who will celebrate with me when I finally receive the oh-so-precious gift of life.

So how could I resist the chance to come and meet one of these remarkable women in person? And when L asked me to share a little bit about transplant and my personal CF story, I was both humbled and excited. Which is fitting, I guess, because right now is a time that truly is both humbling and exciting for all of us out there fighting so hard against cystic fibrosis. There are new drugs on the horizon that show amazing promise in correcting the ion transport at the heart of the CF defect, potentially offering CFers with less advanced lung damage the possibility of life beyond this disease as we've always known it. And advancements in lung transplant offer those of us whose lungs have suffered more damage the hope that we too may soon breathe without our current limitations. Neither option is a cure, in the true sense of the word, but both paths seem to lead to a world where CF might have a new and different meaning, and all of it thanks to the continued dedication of the scientists, the doctors, the donors and the fundraisers, and the Cystic Fibrosis Foundation.

I guess the moral of the story is that all of us are, in a sense, waiting -- L and I, and the thousands of other CF patients and their families. We fight and we wait: for new lungs; for new treatments; for the chance to see our loved ones who have died of this disease once again; and, just as I waited that fateful day in the clinic office, for the news that will forever change our world.

I thought this was a fitting response to my own late-night rantings about CF and waiting, in a way. And I also understand that there are many people out there with CF who are walking an entirely different path -- those who will not receive transplants, or who are awaiting the next stage of a journey that is all their own. And I guess the question always remains:

What are we waiting for?

Guest Blog by CysticLady: CF and Relationships Part II

Let me thank you for the nice comments on my first guest blog on Cystic Gal.  I am also grateful to be able to have a forum to share these experiences.

As such, I thought I'd write a follow-up.  There is another side to this story.  I will attempt to tell my version of it without using too many cliche's, but it may be hard because love is the most written and talked about topic in the history of the world.

Love is a wonderful part of life.  I think I can go so far as to say, it is the reason for life.  It is indeed a real shame to go through such lengths as a lung transplant to continue living, to then deny yourself the chance for love.  The same way that I weighed the risks vs. rewards of a lung transplant, is the way that I have to weigh the risks vs. rewards of love.

I have said before that I'd do everything again, the whole year of dying, the surgery, the recovery, for just one of those days after transplant that I didn't have to think about breathing.  Not even a special day, just a day when I get up, go about the day, perhaps dart to my car in a rain storm.  Then to sit at the end of the day and realize that not once I was fearful of being out of breath, of having to stop and check my sats, or bend over in a coughing fit.  I chose to have a lung transplant with the full knowledge that it would not be a cure that lasts forever.  I chose it knowing that everyday would not be perfect, that in fact, some days would be awful.  I've had those awful days, months, even.  Still, I am happy.

What I didn't share in my post last night was that I have a new boyfriend, a brand new shiny one.  With a lot of apprehension, I forwarded last night's post to him.  He called in the early morning, and, he's in.  I was speechless.  I was scared.  A few minutes later, I was relieved.  I believe him.  He is wonderful.

It may not last forever, and everyday will not be perfect, but I'm going for it.

In other news, CysticGal is doing better today.  She is a bit stoned due to a huge increase in her Marinol.  She has her first ABG ever tomorrow morning, so wish her luck.

 Teeda (CysticLady)

Guest Blog by CysticLady: CF and Relationships

I knew this day would come where I would post here, and I've had this idea percolating; however, I don't think that now, or any time in the near future will I know how to handle relationships and CF.

A bit of history:

I was married once.  We dated four years prior to our marriage and were married for six.  Around year four of the marriage was my lung transplant.  Before we were married I felt I had properly vetted the husband for many types of health issues.  He'd seen the gross hemoptysis, spent lots of nights in the hospital, changed a port needle, put the nebbies together.  Still, things fell apart in a complete and unsalvageable way in the two year period consisting of the year before transplant where I was dying all year, and the year after transplant where I was recovering all year. 

I think all the time really, what was it all about?  It was no secret I was sick, it was no secret that I'd eventually need a lung transplant.  I know for sure that the transplant was not the only reason for the end of the relationship, and for all I know it would be over now if I didn't have CF, or I didn't need a transplant.  Still, I always felt the need to isolate the final straw.  What I think it was, six years after transplant, four years after divorce, is that although my husband could deal with the illness, the hospital, the doctors, the coughing, the hours of therapies... really like a pro; that when it came time for him to actually give something up, change military bases to one he didn't like, give up being deployed, slow his career down - that it made him so mad, and in turn it made ME so mad.

So, what do I do with this information?  Can I trust enough to ever have another relationship?  I built up these walls, stay out, you don't want to come 'round here. 

Disclaimer:  I have Cystic Fibrosis, I had a lung transplant almost six years ago.  In the next four years I will probably need another one, or I might die of something else.  If I need another one I might not want one, but I might and either way it is up to me and me alone.  I will probably also need a kidney transplant one day, if I live long enough.  If we happen to procure some babies using one of the various methods babies come around, i.e., stork, adoption, emergency, then you will probably raise said baby by yourself one day.  And oh yeah, the biggest one, I am a survivor, and as such, I will pick me over you every day of the week and twice on Sunday. 

So, do you still want to date me?  I'm so cute.

Question one:  When do you tell them, in a way that makes the future relationship understand, buddy, this is serious?

Question two:  Once you tell them, and they have the moment where they think and say, "what kind of asshole would break up with someone because of their health?"  And you look over at them and think, "you would, and so would he, and him, and that one, and her too."  What now?

Because let's face it, when we think, "in sickness and in health", we assume that means a lot of health and maybe a little sickness, not mostly sickness.  And when we say "until death do us part", we mean when we're both really old, not in the next decade.

Personally, I have this idea that if the potential relationship is given the disclosure early, then they can walk away, no harm no foul, mitigate the damages, lessen the hurt feelings.  But, it never works that way for me.  Instead, it is the acceptance of the disclosure, and me proceeding like a green light GO.  Until the day that we both realize, yeah, he's that asshole we both denied he is.

I think that I need a yellow light, proceed with caution.

Teeda (CysticLady)

To Pique Your Interest, Cystic Lady Quoted Below

I decided to share with you one of my sister's blog posts about "Project Cruise Hotness," so that you can be prepared for her also-quirky writings. This is the final posting in a long series of writings that we both did related to Hotness, and the pursuit thereof, for our international travels:

Wednesday, April 1, 2009

What We Learned On Our Cruise Part II

1) I do look like trouble, and Beth looks like an angel. Also, little old ladies can be mean to me, and they don't like my cowboy hat. Men do like my cowboy hat. I think the little old ladies are jealous.

2) Only Beth gets compliments like "Princess", "Lovely Lady", etc. Then they say something to her like, "oh looks like you brought trouble back for dinner" (referring to me). I have not yet decided what to make of this, but I can tell you it has been going on our whole lives.

3) I already had a theory that two breakfasts were needed to sustain my troublesome activities. The cruise proved that theory. We need a warm-up breakfast, second breakfast, and to be planning the next day's two breakfasts at all times.

4) The only thing that Beth does in her sleep is kick people. She's always done that. I am able to lots of things, as I have way more practice being productive while also sleeping. Warning: If you plan to get heat stoke and you think my sleep walking butt will save you, you are wrong. I will probably just growl at you like a mean bear.

5) Asian women who give massages on cruises are appalled at the lack of water in my diet. They do not feel that a diet of breakfast and Mountain Dew is adequate.

6) I still regret teaching Beth about roulette. She spanked me the second night and I had no money left. I think I should have taken her to the Unicorn game.

7) When your little sister looks really cute and wants to play the Unicorn slot machine even though it's total bogus, do not do it. I think it was really just a ploy to eat up the 300% winnings I had after my first night at roulette.

8) Seeing cruise commercials about the Yellow Bird boat inspires you to make videos about how you've never drank so much rum punch in your whole life. The video also makes you think lots of drunk baby boomers are riding the Yellow Bird boat and dancing like Elaine Benes. That has some potential. Then, while waiting for your wonderful beach getaway, you see that the real Yellow Bird occupants are really drunk men with hairy bellies with balloon animals shaped like penises on their heads. I think the Yellow Bird boat is a bad idea, personally.

9) A rum cake is indeed covered completely and soaked in rum. It is also air packaged so tight that you might injure yourself while attempting to open the package. Let this be a warning to you.

10) It was very tempting to see how long Beth and I could live on the Nassau beach. But, we felt bad for the sting rays and I think we would have freed them. Sting Rays don't want people touching them!

11) Spring Breakers and Cougars by the pool are not a good combination. We definitely saw a lot of butts, or maybe we just saw a couple and that was enough.

12) Sometimes there will be a belly flop competition. It is run by the cruise director and a gay guy. I'm still not sure how the winner of the belly flop competition fits into his room, or his bathroom. He must have had a bigger room than we did.

13) Cougars on cruises with lots of bling are very strange indeed. They seemed to be seeking eligible males. If there had been any eligible males, Beth and I would have snatched them up. Bling or no.

14) I wish the cruise would have been a couple nights longer so we could properly investigate the two families we thought were polygamists. Who wants to wear those Little House on the Prairie dresses on a cruise ship?

15) When borrowing a suitcase from your parents for your cruise, search all of the pockets carefully, so that upon re-entry to the country you are not accused of trying to smuggle in coffee.

16) We noticed that a number of younger couples frequently looked kinda miserable on their cruise. The older couples looked very happy. This is because by the time you are an old couple, you know better than to attempt to make your wife sit indoors at a cruise ship bar and watch basketball, for instance.

The biggest lesson, always take a cruise with your sister. Take one every year. It's the best!

Posted by Teeda

Follow ups, Discoveries, and Epiphanies, OH MY

What's best for-
ME?

ITEM THE FIRST:
In response to yesterday's post about Beauty , I discovered via email, tweet and other new-fangled electronic means that there is a big hilarious discussion among CF women about the topic of makeup and seeing the doctor. Apparently, the manipulative altering of the female appearance does not stop at the hospital door. I hope to post a poll about this on my blog tonight following tonight's post.

ITEM THE FIRST POINT FIVE:
Boston readers, email me please. CysticGal@gmail.com

ITEM THE SECOND:
I was on the phone with my dad tonight and he shared with me that he is struggling to "catch up" with all this latest news of my health. I realized he is the same position that many of my family members and friends may be in. This news of transplant, it seems, has surprised him by coming much earlier than he thought. In this conversation, we talked about the changing "face" of CF. Growing up in the 80's, the image of a child struggling with CF looked a lot different than the way that I look right now. First of all, the child in that image was a that, a child, and not a 29 year old woman. It is hard to wrap your head around my lung capacity being so low, while the rest of me is so . . . me.

I always joke, "My lungs aren't on my face," because a lot of people comment to me, "But you don't even look sick." Doctors have said it. Co-workers say it. Friends say it all the time. It's interesting - the idea of "looking sick." As a drama teacher, I might be going on conceptual limb here, but I think that people really mean, "You're not acting sick," but I have now decided that issue is a different blog post.

Which brings me to
ITEM THE THIRD:

I know what my gift from God is. And it's ain't Cystic Fibrosis.

My gift from God is a boundless, undirected, uncontainable energy.

I have good ch'i, man. Or atleast, I've got ch'i. Granted, I do not always harness this energy for good. I do my best to never never use it for evil. But occasionally this boundless energy, with it's, you know, lack of boundaries, is spent unwisely. In any event, I have a lot of mental, spiritual and intellectual energy. I do not always have a great deal of physical energy, but the other zip zip zappping areas of my self, I believe, spill right into the areas that are running low.

One of the first times I was really sick was my junior year of college, over Christmas break. I got sick in the days leading up to flying to see my parents, and then I got really really sick on the flight. I remember that it was hard for me to stand up long enough for the holiday pictures, and I also know that I started coughing up some really nasty stuff that made me realize I was sick in a whole new disgusting way that I had not been sick before. (gross side-note). That holiday break, I wrote my first full length play in two weeks. And it was a pretty good play, you know, for a first play from a 20 year old. I particularly remember being sick with a fever and banging out that play on my first laptop, and I know I felt energized and happy doing it.

Which brings me to the other topic that came up on the phone with my dad. We were talking about my place on the "spectrum" of CF care. This is what must be known about me: I did not go to the doctor every time I was ill. I did not go in the hospital every time I was asked to. I did not, on one occasion, stay in the hospital when I was told to.

Am I a compliant patient? Yes.
Why? I do all of the treatments, exercises, lifestyle changes and etc. that I promise to the doctors to do. 100% of the time.
I do not agree to do things, and then do them 1/2 ass.

That being said, how did I get to this point of 23% lung capacity (FEV1), with the past 4 or 5 years in the low 40s, and yet "look so healthy," have a healthy, active life, achieve what I have in my career, and etc. - and have the energy to take care of myself, even now - while my lungs are failing?

How are you so well, while you are so sick? Well let me tell you this. It is no accident. I have worked really hard for 29 years to maintain this level of overall health.

Some people also might say, "oh you must have a mild case of CF." This is not true. CysticLady and I have a very aggressive genetic mutation of CF.

If I'm at all healthy now, it's because I made it so. There was no luck involved.

I have been empowered over my health decisions for the most part since my early teens. The parenting piece of that is yet another blog post for yet another night. But I know this: my parents did right by me. They raised me to become an independent, willful, funny, honest woman who puts herself first. I am not sure that I was raised to put my medical health first. I know that I was raised to put my whole Self first - for whatever you think of that.

Every single decision that I have made, from what to eat for breakfast to what jobs to pursue, to what friends to keep, and when to stay home and when to go out for dinner, which lovers to keep and which ones to get rid of, what career paths to follow- stem from a basic understanding that I have to put the sum total of my whole Self first.

More on this topic tomorrow as now it is late and you will want to read about this idea in bits. Hopefully, you will not think I am selfish because I plan to spend some time talking about my Self. I think it is a good topic for CG. If there is one thing a cg can do for herself to be healthier, it is certainly to ask herself:

What's best for-
ME?

Ten Beauty Secrets of Cystic Gal

Tonight in an attempt to keep it light here on CG, I will answer a question that I literally get all of the time, "How come you look so healthy?"

Now, of course I was blessed with natural beauty by my CysticMommy, and also schooled in a variety of beauty-upkeep-related funlings by CysticLady. So, they get a lot of credit here. I mean, genetics can't screw you every time. But here are ten beauty secrets I have long-utilized to keep my Cystic Sexy Ways.

1. Bare Minerals makeup. It is every bit as good as those infomercials. This makeup completely changes how I look. My friends do not believe me, they think I don't wear that much makeup. But if I don't wear this makeup for even one day, there is 100% guarantee that a co-worker, friend, family member or acquaintance will accuse me of feeling like shit. I have literally done a sales pitch for these Bare Minerals people at Sephora because I'm such a crazy believer. Try it.

2. Abs and Buns of Steel videos from the 80s. These videos are KEY to keeping strong ab and ass muscles despite your possible lack of muscle mass from CF. The videos are hilarious. The unitards are striped. The women are wearing pantyhose. Check into it.

3. Almay Under Eye Concealer Color WHITE. I put this concealer on very liberally under my eye, but also over my eyelid and in the corner of my eye. I blend it out and then apply makeup over it. It completely covers a multitude of sins.

4. General attention to my eyebrows, waxing and otherwise, not only because I've been told they are very animated, but to open up my eyes so I look so alive ;) Similarly, I curl my eyelashes.

5. Jackie Warner download workouts are completed whenever possible. Similar to those Buns of Steel videos above, Jackie's workout will get done what needs to get done without burning too many cardio calories outside of your cardio workout.

6. I used to tan. If I couldn't tan, I would wear bronzer on my cheeks and nose. This makes me look like I have "a little color." Little known fact: I have no color. Similarly, I always wear a pink-based lipstick. Even though I don't apply it a single time after I leave the house (my beauty upkeep ends at the bathroom door), this gives my lips a "health glow." Little known fact: I have no healthy glow.

7. Oil of Olay Cooling Eye Gel. It cools the bags that would be under my eyes if, say, I didn't use it.

8. Home Remedy Alert: I give myself a mask with a mix of lotion and coarse salt about once a week. I let the lotiony salty mix stay on my skin until it dries and then I rinse the salt off. I must've read this in a magazine when I was like 12. I've been doing it ever since and it helps dry out my face and exfoliate it so my face is as soft as a baby's butt. Little known fact: otherwise my face would be greasy and/or dry. This is particularly helpful when doing IVs that really mess with your face!!

9. I drink gatorade like I own the company. At a rehearsal, I'll drink an entire bottle of gatorade before we even warm up. I make sure to drink another bottle during rehearsal. Staying hydrating keep up the facade of my ever present energy.

10. The best secret a Cystic Gal can give another cystic gal: You are gorgeous no matter what and there is a 99% chance that none of these tips work whatsoever. Though I do really do all of them. And that's not just truthy. That's true!

Love, CG

My Underwear Drawer: A Fair Representation of Me

A little known fact about CG is that I came of age in a house run by a woman, my CysticMommy, who worked for a lingerie company. I was the only seventh grader to wear a hot pink bra and thus began a life of altogether too much attention to underwear. CysticLady shares this passion handed down by CysticMommy, and writes, I like underwear, to me, as I sit here typing.

I have come to understand that my current state of being can be easily assessed by looking into my underwear drawer. All a mess? Thus, I am a mess. Empty? Thus, I am empty. All neat and colorful? Ah. Thus and thus and thus.

Tonight, in an attempt to put order to the chaos around me, I decided to spend time doing one of my very favorite CG things to do: organize and categorize, prioritize and synchronize my underwear.

Thus. I have learned:

A few weeks ago, I was the ball of white in the back of the drawer.

Now, I am all the way to the right. Basic. Functioning. Solid.

Soon, I will back in the middle. Colorful. Content. Expressive.

After that, further left.
Comfortable. Beautiful. Understated.

And then, well, I'll really be back.

There are a few other messages in the image but I"ll leave that to your own discretion.



So I ask, CG Readers:
What does your underwear drawer say about YOU?

PS. Tonight's post is double-whammy. I finally decided to upload a video that I had delayed, below. Watch it if you so desire. Goodnight from Cinderella-CG. It is Midnight! POOF!

My Twenties

[This poest has been deleted because it is included in my chapbook, "Into the East."]

CG issues a public apology to male readers

I'm sorry for talking about my boobs so much. One more week, gentlemen. Hang in there.

Ok. I'm in the hospital and I'm getting my port in tomorrow. Thus, I'm going to read as much as I can about it tonight so I'm feeling super prepared. UNLESS, I start to feel more anxious. Then, I will stop reading.

More later.

Please follow me on twitter for live hospital-tastic updates!!

I Work Hard To Be Pretty

Tonight I was going to write a great article about vanity in the Cystic Gal equation, and reference a poem by my friend K. Rooney, which references something I said once, or maybe a couple of somethings a few times. So really I woulda ended up skipping the part where I reference her and just reference me and then brilliantly extemporize.

Then I worked out.
Now my headache is back.
Now I'm to bed.

I'm zeroing in on the headache being caused by higher use of supplemental O2, which does NOT lead to low O2, but might lead to CO retention. I'm a disaster.

Doctor next week.

This week, L'Chaim.

CG

"If You Can't Be With the One You Love . . .

Honey,

Go to CVS.

That's right. Go to CVS." (I have been told that those are the original lyrics to that song).

When I am not feeling good, there is simply no better place to venture to, than CVS. (Or Walgreens, or !!really!!, Osco.) After Cystic Lady's transplant, one of her very favorite things to do was to go to the pharmacy to get her new meds, and also many things that can enjoyed, both medical, consumable, and beautification related.

Tonight's purchases and also the highlight of my day: blood pressure taker thing; gummy bears; Vitamin B; Excedrin; and new eye makeup for green eyed Cystic Gals.

I might feel bad, but boy I look pretty :)

Goodnight y'all. I hope to send a good blog out tomorrow. Love, CG

Boobs vs. Port: Smackdown. A Call for Info!

I need info from other Cystic gals! I am considering getting a port (or port-a-cath, which is an entry way for IV meds that stays in a person, long term), but love my chest the way it is. Meaning, I am a boob girl. I am fine to admit it, my chest is my best asset. I wear v-neck shirts and necklaces and love love love my body from waist to shoulders. I am not interested in fucking it up. I like it. Not because guys like it (I don't have big boobs even,), I just like it for me. Always have. It's a staple of my fashion sense and my sense of femininity.

Boobs and Port. Give me the info!

Does it feel weird if a man hugs you with a port? Can you feel it pressing? Does it hurt?

Can a man feel it with his hands? (When it's not being used for IV meds, I mean)

Does it heal closed between treatments? Like if you had 3 months with no IVs, would it heal up?

When you are doing IVs, how much "geography" of your chest does it take up? Is it like a PICC in your chest? Are you destined to sweatshirts and woolie sweaters while on IVs?

GIVE IT TO ME STRAIGHT, GALS!!

Love, CG

There Are Nights

Disclaimer: I haven't really written any sad posts. Which is ironic, because I'm usually a sad sort of writer. I like sad topics and write sad lines and my characters are sad and boohoo. But this is my only sad post here so far. So, well, here it is.

And I didn't write it today, so don't go tweeting or emailing all crazy. I decided to post it on a different day than I wrote it so that it wouldn't be an overdramatic cry for help. Just a thought for out there- the bloggy world.

With Love, CG

There Are Nights

[This poest has been deleted because it is included in my chapbook, "Into the East."]

Putting the "Gal" in Cystic Gal

Today is the first day of my very horrible terrible mind-numbing fist-pounding-on-my-desk crampy did-I-already-type-the-word-terrible period. I have to go back to the couch. Some other day I'll rant about this and its Cystic connections and my diagnosis with Pulmonary Endometriosis 4 years ago.

That's all I'm going to say about that for now.

I have to go catch my uterus. It's falling out.

CG