My Child Can't Swallow Pills !

This is an informative CG Public Service Announcement to show you the horrifying truth about what will happen to CF children who don't swallow their pills properly with water or milk. Be warned, this video contains graphic pudding imagery.



The actual message of this video is that even though I tried my whole life to swallow pills with water like a grown-up person, and even though I literally had to attend something called "Tongue Thrust Therapy" to correct my "dysfunctional swallowing" for which I endured several forms of harassment by my two teenage siblings, and even though I am now about to be 30 -- twice a day I take all my pills in a pudding cup. That's the only way they go down. When pressed, I can take one or two pills with water, but other than that, I swallow them with solid foods during meals.

SUCCINCT MESSAGE: Don't sweat the small stuff. Swallowing pills . . . very small stuff (especially when the smalls stuff is a BIG pill or ten!)

cg

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.)

I Bet You Think This [Blog] Is About You

*in the post below, the name Jerkface has been used to substitute the identities of four different individuals.

So I have this problem. Every time that I deal with romance on this blog, all of my exes think I'm writing about them. Which is weeeird because a) I have a very detailed disclaimer dealing with this issue and b) I have written very little about romance on this blog and even put CysticLady to the task of covering romance during her guest posts (also because she is a romance-maniac right now). I got this email the other day that accused me of being all angry at one of my exes, which is weird, because, you know, I've had bigger fish to fry these last six months, you know? Not once sitting down in the ICU trying to figure out how to get from one end of the bed to the other without my oxygen dropping to 70, did I think, "Oh I am so angry at that man!", nor when being checked for hypoxia and struggling to pick out the commonalities between an apple and an orange did I say, "Now wait, let me tell you about [Jerkface]." And yet, oy vay, I get accused of man-anger when all have is lung-anger since August 11th.

And I have this other problem. A lot of my exes who are not particularly in my life anymore are writing to me and saying they are praying for me. Fine, pray away. I like praying. I do it every day. But it makes me wonder, if we cannot be there to support people in the real world, is it appropriate to try to affect them in the spiritual world? Perhaps, but I'm not sure. I also think this conundrum speaks to a great problem I have always wondered about with CF, which is the pressure that I have always felt to stay in contact with people only because they are curious about whether or not I am still alive. I know that sounds crass, but it's true. Perhaps other people have experienced this passing thought. For me, this means that I invited [Jerkface] to make peace with me before my surgery and he basically said, "nah, but I'm prayin' for ya," which is, you know, juuuuuust like making peace. ?

And then the other problem, the ultimate ex-boyfriend problem - that exes never believe that their exes can possibly be happy without them. I don't think that [Jerkface] can possibly be happy without me, mostly because he used to tell me that all the time. [Jerkface], in turn, cannot possibly believe that I have been fabulously happy, besides this whole my-lungs-are-dieing thing, mostly because I used to tell him that all the time. What fools we both are, as I am most definitely happier now than when I was all involved with [Jerkface]. Still, it takes a godly concentration to hold my fingers back from the computer where he writes, "I hope you're happy," and I want to write, "I'm fucking happy, I hope you're fucking happy too, jerkface!" If anything, these last six months have shown me that romantic love is not the highest thing on my priority list at all.

Watching things fall out of my life as I got sicker, and hoping for them to drop back in once I get well, I realize that romance is lower on my priority list than I ever expected.

CysticGal and CysticLady: Twinsies of Evening Wear

I bet you all wonder what CysticGal and CysticLady
do with all their evening time . . .

Well, here it is! Glamorous!

CysticGal, toweley at the hospital.

CysticLady, toweley at home.

Goodnight! Spend your bloggy time tonight exploring other parts of the blog- perhaps the archive, or the labels section, or get on twitter. Everybody's doin' it!

Love, CG

I Did Not Notice the Passers-by, And They Did Not Notice Me.

Dear CG Readers,

I was having such difficulty deciding how to communicate with you again as everything unfolded over the past week and a half. I decided to make my Newsflash! to get the word out there, and then did not know what to say. (Not something I usually experience;)

All I can say, so far, is this: When I got so sick two weeks ago, I spent some time mentally preparing. I thought I was prepared to come into the hospital, and to get better so that I could continue my journey to transplant. my transplant if I had to, to stay well. I never thought that things would get so much worse before my transplant. I thought my health would get a little better before the transplant.

Now, my biggest hope is that my health stays just the same. I will look at every day of slight improvement or plateau as a victory. I am no longer demanding leaps and bounds, they could lead to setback. I am demanding one day at a time of same or a little bit more manageable.

(More to come in later posts...)

There is a long story to tell and many lessons learned and many doorways opened . . . opening still.

Tonight, in the middle of the night, settling into wear my BiPap over night, and feeling unsettled, confused, enlightened and downtrodden about how far down the rabbit hole I went, and how hard it was to come out. Scared that I could not do it again . . .

I had the pleasure of hearing this song and was suddenly clapping and swaying on my bed, enjoying the rhythm and lyrics of the song and how closely the words echoed with my journey last week. Perhaps these words will help explain while I am too tired to write all the other ones. I invite T-Money, CysticDad, CysticMom, or even J-Proffie to offer submission. CysticLady is charged with filling in the gaps.

I don't want to be dramatic, but I believe that this past week had the potential to be the 5 days that would save my life, or take it. That does sound dramatic, but I believe it to be true right now. I want to remember the skills I used so that I can use them again and waste less time finding them.

ANYHOW! The song:

Moment Of Surrender
U2

At the moment of surrender
I folded to my knees
I did not notice the passers-by
And they did not notice me

I’ve been in every black hole
At the altar of the dark star
My body’s now a begging bowl
That’s begging to get back, begging to get back
To my heart
To the rhythm of my soul
To the rhythm of my unconsciousness
To the rhythm that yearns
To be released from control

I was punching in the numbers at the ATM machine
I could see in the reflection
A face staring back at me
At the moment of surrender
Of vision over visibility
I did not notice the passers-by
And they did not notice me

I was speeding on the subway
Through the stations of the cross
Every eye looking every other way
Counting down ’til the pain would stop

At the moment of surrender
Of vision over visibility
I did not notice the passers-by
And they did not notice me
------------------------
sorry to borrow some song lyrics, but there they are!

Goodnight, I have to dance and cradle myself to sleep, I wish the same to you.
CG

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

Introducing Guest Blogger Cystic Lady!

"PS - i adore the 20 second videos of you
and [Cystic Lady]
i've never met the girl, but i can tell she rules."
-Actual comment on facebook today.

Cystic Lady, March 2009, in pursuit of Cruise Hotness.

I have added a guest blogger who you already e-know and e-love, Cystic Lady! Cystic Lady hails from the original Cystic Family of Cystic Gal, Cystic Mommy, Cystic Dad of recent CG commentary and Cystic Sibling who goes mostly anonymous on blog thus far. (He is mysteriousemente, that Cystic Sibling I love!). [If you struggled to pronounce mysteriousemente, try it again in a Spanish accent).

Cystic Lady and Cystic Gal teamed up earlier this year to write the much-acclaimed and forwarded Facebook Notes, "Project Cruise Hotness," of which we have not yet written the final chapter. Perhaps we will publish "Project Post Transplant Hotness" in 2010. Oh to be a Cystic^ Sister!

Cystic Lady is in her thirties, w/CF, CFRD, and approximately 6 years post-transplant. The rest of her story is up to her to tell. She has gotten her most recent bloggy start HERE, but she has agreed to contribute directly to CG for awhile, while I'm undergoing my shiizzzle. Don't worry, I'll still be contributing, like, all the time.

Let's give a big CG welcome to . . .

Cystic Lady!

A slice of life with CG and CL (CysticLady)

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

"Cyster Fibrosis"

CysticGal(l) and CysticLady(r), approx. 1983?

I grew up with a sister with CF. (CysticLady)
Yesterday I heard this is called having "Cyster Fibrosis."

I've been trying to write a poem to talk about what it is like to grow up with someone who
looks just like you
talks just like you
thinks just like you
like any other sister
but who is also carrying around
all of this.

I'm literally going to go dig in the basement for a journal.
I'm going to start looking there.
In the past.

Yesterday I talked on the phone with my oldest friend, S-Bestie.

S-Bestie (l) and CysticGal(r)- My Birthday, 1985

She and I grew up with each other and knew each other since we were very small. We lived in the same neighborhood for awhile, when people still played with the other kids that lived right there in their neighborhood. Then I moved, and moved back, I went to college, and she moved to Colorado. S- and I have always talked a lot over the years. But she is still my best friend.

It was good to hear her ask me a few questions that I had not asked myself yet. It was good to hear her listen to my crazy mix of spiritual beliefs and not think I was a weirdo or try to get into some sort of religious debate. It was just good.

If I have no words to say tonight, perhaps I will have some words for later?

I had a great day today. I was on schedule with my meds, I did some crazy good yoga, and I ate a lot of foods.

I don't think CF is a gift from God.

I believe the following things are the gifts given to be my God and the Universe:

1. My birth
2. My parents, CysticMommy and CysticDad
3. My siblings, CysticLady and CysticSibling
4. My best friend, S-Bestie.
4.5 My many mentors growing up and currently.
5. My laugh and each of the moments when I have had reason to use it.
6. My sense of humor which is an indirect gift from God, given to by through my Cparents, my grandparents, my aunts and uncles, and my Csiblings, and S-Bestie.
7. The town I grew up in.
8. My cat, B-Kitty.
9. My dog, Gracie, who has passed. She was a gift from God to my whole family.
10. My creativity.
11. My writings. The best things I have ever written just come to me. I do not even feel that I own them sometimes.
12. There is one thing that is a gift from God but I'm going to keep it private. But H-Mama knows what it is.
13. The men I have truly loved and the feeling of falling in love with them.
14. When I go to heaven or get to be an angel or am reincarnated nicely as a cat or something, that will be a gift too.

Conversely, I do not think the following things are gifts from God or the Universe. I believe that God and the Universe were obviously involved or aware of these things, perhaps they were discussed at some sort of "crappy things for CG" meeting, but I do not believe the following things are gifts, per se. (These are in response to the above)

1. The way that I will die, whether hit by a mack truck or otherwise.
2. Cystic Fibrosis
3. My sister, CysticLady, having to have Cystic Fibrosis TOO. Nor my brother being born in the middle of two CysticWomen, when he could've been born between two normal Women and that would've been enough for him- jeesh.
4. The friends I have lost over the years.
5. The people that don't like my laugh, though it is obnoxious. If you don't like somebody's laugh, you got to think about your attitude. Lighten up people. Obnoxious laughs (like mine) are double funny. You can laugh once at the joke, and once at me, and I won't even know it! I always secretly wonder if that is why people laugh so much when I say stupid things.
6. Ditto on people that don't like my sense of humor. I have found that they are usually humorless people in general.
(7-9. Nothing bad to say about my hometown or pets)
10. The inappropriate parts of my creative thinking and sense of humor, and my lack of control of said creative thinking and the expression thereof.
11. The fact that very few people read the things I write. I mean, God did not gift me a publicist or anything.
12. In terms of number 11, it is not a gift from God, always, to have this gift from God. (oooh....mysterious).
13. The men I have truly loved in vain.
14. I am not delving into this one. No way, man. Not on a blog. God could read it!

I don't think CF is a gift from God. I think it is a challenge from God, sent to develop my gifts and the gifts of those around me.

Food for thought...

Love, CG

Commentacular

This a post inspired and edited from comments made on my infamous post, Ten Things A CG Wants to Say that caused the internet sensation! This post comes more properly prepared with its own disclaimers! I presents to you:

Ten Things a CG Hates to Hear
by CG et al.

1. "Your cough sounds just like mine. I had that last week! It was horrible." (Teeda/CysticLady)

2. "Don't you go dieing on me!" (Ronnie/RunSickBoyRun)

3. "Will your grow out of it [cf]?" (Deb Wilson)

4. Complete silence in the room just as a coughing fit starts.*

5. Why are you still working? Couldn't you just, like, go on disability or something? I would never work if I had what you have.**

6. You have such a bad attitude about your illness. I saw this one interview with Michael J. Fox . . . he has a great attitude.***

7. So you're better now, right?****

8. Have you taken your [son/daughter] to the doctor? / You should get to the doctor! That cough sounds rough!*****

9. (Dramatic sigh, bows head to the right, makes a pained face, whispering) "How are you feeling?" (clutching chest)******

and tonight's CG specific #10. Thing a CG Hates to Hear . . . (drumroll)

10. Do you go to church?********

4*This is the CF equivalent of the moment at a party when someone tells a dirty joke and the whole party is quite just as the person says something distasteful. Which a) kills the otherwise funny joke and b) is embarrassing for all.
5**In my head I always think, yeah, I know, that's why I come to work all the time and you're absent every Monday. There are unemployed people in the world! Why do you get to work here? (I have thought this through the years, so the time/place are not important)
6***If I was on the Oprah couch, I'd have a good god-damned attitude too.
7****No matter what people will tell you ahead of time, if you answer this question with anything other than "Well, YES!" it will make someone extremely uncomfortable. They might cry or hang up on you. I'm serious.
8*****This question always seems to come from someone who is simultaneously exhibiting some unhealthy behavior of their own: either drinking, or smoking, or maybe a Big Gulp is involved. I always try to bite my tongue. I usually succeed.
9******I thought I was the drama teacher! Please don't comment and yell at me and say, "they are just concerned. you are too cynical, CG!" This sort of overplayed antic only comes from a Rachel Linde type of persona. A clucker of henhouses. A lunch table whisperer. An email forwarder. That's all I'm gonna say. Well -- and that sincerity is easy to read. Drama is great. I love it. It is not ever, ever sincere.
10********yes, i do. but thanks weirdos for implying that the reason i have CF is because I'm some sort of godless commie.* i'm sure there are plenty of atheists without CF and this Catholic gal's a Cystic Gal. So there! *Also, commies may not all be godless and godless people are certainly not all commies.

!This is my first "Unleash Your Story" post! If you read this post, you owe the CF Foundation $2! But don't pay yet. You will pay later....bwhahahahahah, when I am done in September!!! To see my pledges page, click HERE!

Oh, America, you crazy dazy country full of CG Readers

It's funny, I was just thinking:

I wrote a post that made fun of a bald guy, quoted but did not name a former co-worker (who frankly, no one liked anyway...and it was like 7 years ago), dissed casseroles, and shared a sad feeling, and I got 12 comments, 3 emails, and 5 phone calls.

I wrote a post that told you that not everything I write is true, that I reserve the right to delete your comments, and that delves into the emotions instead of just labeling them- and no one responds.

That "Readers' Digest," they're really on to something.

Ok, enough about the blog. Back to the regular topic: ME!

Tomorrow is the Kickoff of the "Unleash Your Story" fundraising event for the CF Foundation. I invite you, implore you, demand you to join Team Cystic Gal today! You don't have to donate money yourselves, I mean - some of you are poor! unemployed! cheap! - but if you can get some other, kinder, more-employed, less-cheap person to donate even one hard-earned dollar (or even one that they found in an old coat pocket), you are the team member I need! Click HERE to join!

My sister, CysticLady, started a bloggie of her own! Click HERE to find out about her journey to the US Transplant Games in Madison Wisconsin one year from now! Also, see funny videos of me and my family cheering her on. CysticLady and Cystic Gal are pleased to bring you future posts in this CysticFamily Fashion. It's like the Simms. With coughing! Also, you can experience a cruise with the CysticSisters if you choose to click on that label.

I have to save my better, more poetic brilliance for tomorrow- when the unleashing begins!!

Goodnight,
CG

A follow up to NUMBER 9 (...Number 9... Number 9 . . .)

Such a firestorm was lit by my little top ten list, Ten Things a CG Wants to Say last night. I am so glad I wrote it, but what a whacky ride today was watching the comments and emails and some phone calls come in.

Two and a Half Points for ToNight:

POINT ONE:
I feel, at this time, that I must be honest with you, the reader, and tell you something about the blog that you might have already intuited through reading it, or you might not have. This might be an element of the blog that you view as a turn-on, or a turn-off. This might be something you had not considered but do not really care about either way.

Any way you take it, I must share with you that everything I write in this blog abides by a code of truthiness. Not a single thing in this blog is a lie. However, some things may not be particularly true.

[Truthiness is a term first used in its recent satirical sense by American television comedian Stephen Colbert in 2005, to describe things that a person claims to know intuitively or "from the gut" without regard to evidence, logic, intellectual examination, or facts.^[1] ]

For example, in regards to yesterday's list: I posted it yesterday, but I started writing it weeks ago. So, there is no really true time-stamp on things said in the blog like "yesterday, last week, this year..." etc. I've been a writer for about 23 years :) so I have a pretty big pool to draw from. And I'm not even kiddin' about that, y'all.

Not a big deal on the one hand, because I just want the writing to be truthful and have an effect. On the other hand, when I sent out Ten Things a CG Wants to Say last night, people were calling me and asking :

1. You got dumped by a bald guy last week? When did you get back with HIM?
2. I thought you stopped talking to your neighbor?
3. Why are you still on that chatroom?
4. Who called you from work and oh my god, what did they say?
5. I did send you a card, thank you very much! ...

etc!

Notice, the topics was "Ten Things a CG Wants to Say", not "Ten Things THIS CG Wants to Say." I have an idea for a post tomorrow based on a tweet I got today. That blog is going to be written for that tweeter. I want to write things that I think are universal for the patient experience, not all of them are going to be true for me in the very moment that I explore them on the blog.

POINT ONE POINT FIVE

I will be deleting comments that are personal narrative or use my real name or town or etc. Though I currently use my name on the blog, I work in an industry where I am always up for work, getting work, being googled, etc. So, I might periodically go anonymous on the blog and just take my name off it.

I also want to continue to use the blog to serve its audience, not my personal correspondence. That's what email and facebook are for!

POINT TWO:

What a wonderful conversation was opened up surrounding the topic of privacy vs. support at the bedside! My own T-Money and I had a wonderful conversation about the delicate balance it is to be a patient in the room, and a caregiver at the bedside. It seems that the moment a patient wants to be alone, it can be closely followed by the moment s/he wants a companion. No one has a proper etiquette book and CF can be an ugly, indelicate, impolite disease.

Sometimes patients want it all: They want to have privacy when they aren't at their best, but they need arms around them to help them feel better. Caregivers want it all too: They want so badly to do "the right thing" when none of their actions feel "right" because the situations themselves are very difficult.

My CysticMommy and I then talked about my responsibility to work on saying what I need when well-meaning friends come by my house and drop by with food. I could as easily say, "You can put the casserole down, I made coffee, tell me what's going on with you. I miss you!" instead of letting them lead the conversation and come and go so quickly.

Then, CysticLady and I talked and she shared that it's just good to get it all out on the table. With CF, most of the day we are battling battling battling to put our health first. It can be exhausting sometimes to have to be the director of every little thing like the smoking man at the cross-walk, or the neighbor at the end of the driveway. Sometimes you just gotta let it float by til a few months later you write a funny/sad blog about it!

Goodnight y'all!
CG

There's Always Tomorrow

Today was not that much better than yesterday. But it was better.

Things that made it better:

1)I called the CF Clinic and said, Hey man, this thing where I have to take 1/2 of my anti-depressant because of it's contraindication with my oral antibiotic is, like, uh, not working. Since I'm crying and sleeping all day and stuff. So we agreed that after these 3 weeks, I can go back to the antidepressant at full blast and stop taking that particular antibiotic (1 of the 3 I'm on currently).

2) I called my friends back (T-Money and H-Mama). Both called me yesterday and though I have to admit, I didn't really enjoy talking to them since I was all doomy and gloomy, it was better that I talked to them. Ditto for CysticMommy and CysticLady.

2.5) I still took a nap. I decided that no day is so bad, or so good, that taking a nap cannot indeed make the day even better. KEY: I limited my nap to a decent 2 hours. A normal-people-nap. I even answered my phone when N-Pregg called from clinic. I was not in the DOOM NAP. I was in a normal sleepy nap.

3) I had dinner with T-Money, H-Mama, J-Frusb, J-Baby and M-blankie. Nothing to brighten the mood like meeting a friend's new cat and holding a friend's baby, who officially learned what an "owwie" was by pointing at my port site. I even think I heard her say "All wrapped up!" back to me as I explained it to her. That J-Baby, she's a J-Genius. I also used my crazy cat lady skillz to coax M-blankie out from under the bed.

4) I outted my blog onto my facebook so now my blog is officially out of the closet. Everyone in my life can read the juice details of this health conundrum I'm in. "And F 'em if they can't take a joke" about some of the posts for chriy-yie.

5) I made dinner plan with a certain gentleman tomorrow for Jazz music, O2 sniffing and yummy food. It is certain to be the best non-date I've had in awhile. (Though I'll miss J-Teach, who is out of town).

In closing of tonight's post:

To Feel Better When You Are Extremely Gloom and Doom (EGD):

1. Do not pretend you are over the gloom or the doom (OGD) until indeed you are OGD.

2. Communicate with your docs when you are feeling EGD. Ask yourself, "Are there any chemical reasons that I am EGD?" Things that can lead to EGD: changes to psych meds (duh); pain meds; low O2; hormonal changes (either pharmaceutical or natural); alcohol use; low blood pressure; nutrition problems; blood sugar problems; etc. Adjust what you can with your doc's approval if you sense a problem.

3. Call back at least 1/2 of the people that call you (let's be realistic here.) See #1. It is very important to remember #1 when you do #2 or you will have to revert to yesterday's post altogether.

4. Call back family members and still adhere to #1 unless indeed you are OGD.

5. Take a reasonable length nap. There is never a day so good, nor so bad, that a nap cannot make it infinitely better.

6. Create a specific plan to be around another human, any human, and consume foods. If pets and babies can be involved, all the better. Pets nor babies are capable of EGD, and being around them increases the chances of one becoming OGD at a faster rate.

7. Be more honest with more people about your feelings. This is a good non-EGD rule as well.

8. Make some special plans for some special sort of something to happen at a future time, so that you will look forward to it and have a goal to be OGD by that time.

Goodnight and a non-EGD day to you,
CG

In the Year Two Thousand . . . In The Year Two Thousand Nine

Me at home on Home IVs Day 2: 2nd Day of Home Workout, post-hemoptysis. More on revised exercises sitch in later bloggies . . . P.S. Who knew that a port, and a tube top, go so well together? Ah, home gym in the corner of my living room, I love you so. I would gladly forego new blue jeans and fancy I-Pod for you anyday. If only the other CFers would all do the same. Sigh . . .

ON TO THE REAL POST:

In the Year Two Thousand . . . In the Year Two Thousand Nine . . .

Lately I've been asked my many Readers to tell more about my CysticGal demographics and specifics. Hard to do when CG is still in the semi-anonymous state that you read here. I'm going to dive on in and just keep using my very secretive, highly strategic pseudonym creation calculation to tell the story of CG. Just so you know, I am only keeping CG semi-anonymous so that if people google my real name for work-related stuff, they don't get this blog. The people in my life know that I'm writing it, and you know, it's really me, CG here. :)

I am going to have to do this in shifts, so everyday I'll add more posts to the "Who Is CG?" section that is rolling out, and then when it's all out there I'll edit it together for your reading ease. Okay...

I am getting more questions about my situation right now, than I am about my situation in the past, so I'm going to tell the story of CG backwards. Those IRL friendly readers may laugh, here she goes again, writing all chronologically-askew. So sorry. It's the way my brain works, man.

Right now, in the year two thousand nine, I live in new england. Demographics: I am 29 years old. I am a Gal. I have CF. I do not have CFRelated Diabetes. I have a history of Pulmonary Endometriosis and have heard varying opinions on whether that is the same thing as catamenial hemoptysis. Either way, I have that too. I weigh about 98 lbs. and I'm 5' 1". I just had my first Port-a-Catheter placed last week. Prior to that, I think I can count 6 or 7 PICC-line placements in my life. Prior to my first PICC line in the year 2000, I had not had a hospitalization since approximately 1988. My health was managed with outpatient courses of oral antibiotics through my late childhood and adolescence.

The meds I take have not changed that dramatically since, I'd say, 1995, other than when I am having an acute exacerbation. In 2005, after moving to new england, I had a year-long battle with catamenial hemoptysis that ultimately resulted in me being diagnosed and treated, very successfully, for pulmonary endometriosis. Recently, I experienced a big bought of catamenial hemoptysis again, and was treated presumtively for pulmonary endometriosis. I hope that this treatment can ironically lead to an up-swing in my health.

As of 9/1/09, my FEV1 is 16%. In May of 2009, my FVC was 31% Predicted (FEV1 22%) after a course of IV antibiotics. Prior to that course, in October of 2008, my FVC was 43% (FEV1 28%) after a course of IVs.

I am single single single. I have no kids and 2 cats, S-Purry^ and B-Kitty^. I have a few close friends and a lot of long-term friends back home where I grew up, which is not where I currently live. I have a lot of really close work friends because I work in an industry where your work and your social life are sort of mixed and oddly intimate. That makes me sound like a prostitute. I'm not a prostitute. Jeeez. This paragraph is going in the wrong direction. I'm a drama teacher. Now the googling stats for my page are really gonna soar though, so I'm leaving it!

Anyway, back to the facts: I have two siblings. One is four years older, CysticLady^. One is 18 months older, CysticSibling^, a boy. My parents are married and live far away from me. My Csiblings also live far away from me.

My sister, CysticLady, has CF and is five and 1/2 years post-transplant. I believe that she and I carry the same CF gene (there are different variations, I believe we have the same one). My sister was transplanted at the age or 27.

My brother, CysticSibling, does not have CF, and I believe that he does not carry CF either.

There is no other history of CF in my family other than possibly a great great aunt on my mother's side who died very young. However, she could have had TB, right? I believe that I inherited my CF gene from my mother's father and my father's mother, but I could be wrong about that.

I am a theatre artist and teacher by trade. The only way I have ever made a living, with the exception of 6 months of nannying after I got into grad school but before I started it, is by creating theatre, working for a theatre, or teaching others to create theatre. But that isn't the topic of this blog, now is it? More on that topic later.

I work full time, though I'm currently on a short leave to attend to my health.

More tomorrow. Love to all,
CG from the CG-at-home-Hospital

My CF Firsts

Another bloggy did this list, so I thought I'd take a crack at it. Shout out to Casey's blog. Check him out!

Since I first published this, other CFers have been posting their firsts. Here is one mom's account of her baby girl's CF firsts. It really shows how things have changed since Cystic Lady was born in 1976, and I in 1980: A Day In the Life of a CF Mom;

I have also updated my firsts to include their firsts to we can all compare :)

Here are some of my CF "firsts." I based my list on my own knowledge and memory, though Casey, I suspect, had to ask his parents for the info. (Uh...my parents still don't know about my blog). I will also share any memories I have.

My First . . .

Breath- 1980

Pancreatic Enzymes- As early as they could put 'em in my formula, I think.

Diagnosis- 6 months old. Earliest they could do it in 1980, I think.

Daily Vitamin- Age 3. Flintstones Complete.

Oral Antibiotic- Age 6 or younger.

First Asthma attack- 7 years old.

Halloween Costume in hospital - 8 Years Old. I was a red M&M. I remember the face of the nurse who helped me make it. It was a project for us.

CF Doctor and clinic- 6 mos. Dr. Gibson at Rush Presbyterian St. Luke's Medical Center, Chicago. He was the best doc I ever had.

Formal Exercise other than sports: Age 4. My mom made me and Cystic Lady (then more of a Cystic Kid) do this Mickey Mouse Club Exercise. It was lame. Following that (Age 8ish), she made us do this "Get In Shape, Girl" exercise for kids. It was similarly lame.

PFT- Not sure. I do know that Dr. Gibson said that according to my first try at a PFT, I was already dead. I have never been good at them.

Nebulizer treatment- Age 7 or 8?

Dose of Pulmozyme- About 13 years old.

CF Sibling: At birth, came to realize I have a 4 year old sister, Cystic Lady.

Non-CF Sibling: At birth, came to realize I have a 18 month old brother, Cystic Sibling.

Hospital Stay "Clean out": Age 8, where I really began to be afraid of hospitals.

Bad memories: being forced, screaming and in full tantrum (and I could create some doozies well into my pre-adolescence), into Chest PT with a machine. I had never seen a machine before. It was very loud. The PT woman was mean and hurt my wrist and I still sorta have a hatred for her; Remember being alone a lot and watching L.A. Law on tv; My sister having a separate room from me, as they just started to separate CF patients' rooms and/or they were afraid we would fight, me 8, she 12; my room was always dark; My IV came out in the middle of the night and soaked my bed with liquid. I had to get a new one in the middle of the night. Even then, I knew this was ridiculous; Nurse lady took me outside to a park and we played on a swing. Even then, I knew that this was supposed to be a kid-like experience for me in the middle of a bunch of adult-like experiences. I was not amused but put on a "wow, thanks," expression; Meeting two teenagers both w/ CF but I think they were unrelated. They had these horrible IVs in their arms that were some sort of long term IV that you could see run up the arm along with the vein and a sort of huge tagaderm over the whole thing. Their room looked like a dorm room and I thought, they must live here. They had posters on the wall and everything. I worried my sister would move in with these CF teenagers in their CF teen room; The word clean-out and me thinking it meant they were gonna go in me and get something out of me; Going back to third grade and doing show and tell with a stuffed animal mouse I got, and saying I got it in the hospital, then not wanting to answer when someone asked me why I was there, my third grade teacher, who I actually adore, then scolding me, "Why did you bring it up, then?"

Good memories: Making M&M halloween costume with a nurse. She brought the poster board and we made the straps out of ties from a hospital gown; Skating on my IV pole down the hallway; Learning to play pool in the "lounge;" Watching adult tv like L.A. Law and Thirtysomething all day and night; meeting my black roomate who had something really bad wrong with her, and no visitors. We got along great and my 8 year old brain thought she looked just like Tracy Chapman because they had the same hair; Someone gave me really adult nice-smelling shampoo to use; Visiting the nurses and eating candy from them; putting hospital-issue deoderant on the inside of my wrist to my elbow because that is where I thought my "underarm" was, then smelling powder fresh all day; Getting gifts like balloons and stuffed animals.

[...]

Dose of Tobi- I think, 12 years old. Prior to that, inhaled tobramycin mixed with saline and a needle, the old fashioned way.

Read "Alex: The Life of a Child:" Age 8.

Started thinking about mortality: Age 8.

Started realizing I'm gonna live through this chapter and then the next one too: Age 20

First loss to transplant: Age 13, my Godbrother. He was 19.

First time I really remember FEELING sick: Age 9 or 10 when my Gramma was visiting.

First hemoptysis: Age 22, at work filing papers: Gurgle Gurgle.

First major bleed (later diagnosed as Pulmonary Endometriosis): Age 24

First home IVs: Age 20

First home IVs with no hospital time: Age 29

First time I freaked out about my fertility: Age 24

First time as public advocate for CF Adult issues: Age 12. Ha! Youngest member of the Chicago "Chosen Few" group, who had to change their name after we realized, it wasn't "a few" people that were making it to adulthood with CF.

First time a relationship changed dramatically during/immediately following big changes in my health: Age 8.

First time without health coverage: Age 21, following graduation from college and without a job (Also, my last time.)

First PICC line: Age 20

I could go on!! Maybe I'll add more tomorrow.

What are your CF firsts?
CG

Know When To Hold 'Em

Okay. So the other day I had the idea that I could write my book about CF and actually use the lyrics to the song "The Gambler" as the names of the chapters. This was the day that I wrote "Know When To Walk (away), Know When to . . . Walk."

So anyway, that's my silly idea of the day. That and the long joking conversation I had with Cystic Lady, my sister, about starting a family with another bloggy CFer. She and I were joking about marrying another CFer (which others have done, I knew a couple of couples growing up in UNDISCLOSED CITY, USA), and having babies. We were imagining the headlines, and articles:

Couple with CF Takes Advocacy To New Level: "We want a whole CF family!" says Cystic Gal. Ms. Gal married Cystic Homie at the age of 29, when they met and fell in love over blog.

They've Gone Too Far! A couple with Cystic Fibrosis says they plan to have 19 children and star in a reality show called "19 CFers and coughing," to increase awareness of the disease. Though every single one of the babies will be artificially conceived, due to the couples inherent fertility issues, the Fibrosises say they'r ready for the challenge! "We've lived through worse!" says Mister Fibrosis.

(the rest of the jokes got kinda shady so I won't post them here.)

Anyway, y'all that have been reading my Exercise Tracker might be wondering how I'm feeling. Just the same as yesterday. Having a bad time over here on Anywhere Street, USA. I'm at a point with my O2 saturation that is really frustrating, that has happened to me before. My resting O2 is really low without any supplemental O2, but then I wear just .5 or 1L, and it's great! 93! Conversely, I can have it cranked up to 4L and be doing some minor exertion, and be struggling to maintain a decent SAT. Cystic Lady talked me through some possibilities for helping with the oxygen conserver that I use during the day:

DID YOU KNOW YOU CAN PUT THE CANULA IN YOUR MOUTH? My recent tweeting investigation tells me that all the CFers with O2 knew this! I did NOT know. I will try it tomorrow!

DID YOU KNOW THAT ANEMIA CAN MAKE YOUR SATs DROP? Every month I go through this and my sister has to remind me to take some iron!

DID YOU KNOW THAT BEING IN A BAD MOOD ONE NIGHT IS A SURE FIRE WAY TO BE IN A BETTER MOOD THE NEXT? Oh wait, maybe that's just me.

Goodnight to y'all and a shout-out to all my homies in the lockdown ;) HA! I've always wanted to say that.

That, and "Pour one out for the homies." Though in this case, I'd have to pour out an Ensure while I said it.

Ha.

Okay, that's enough.

Nightie Night,
CG