40,000 UNIQUE VISITORS!!!!!!!!

40,000 unique computers
and probably human beings
have viewed Cystic Gal!

I am so very grateful!!

Statcounter tells me that the 40,000th UNIQUE READER was from

Newnan, Georgia, United States

CONGRATULATIONS, NEWNAN!

I feel compelled to, Seinfeld-style, also say, Hellooooo, Newnan!

Please also enjoy my new fave-o banner image from my first dry run. Now that's one casual sexy foot that's ready to give it a-go again!

xxoo, cg

Step Two: The First Step Is Admitting You Have Medical Bills

I did not announce Step Two in the Get Back To Yourself Plan of 2010, which almost rhymes...almost - but alas, and forgive my familiar phraseology":

The first step in paying your medical bills, is to admit that you have medical bills.

So I spent most of the morning organizing them, and then, and I can say it- PAYING THEM. I realized something funny. If you get in the right mindset, it can be just as empowering to realize that you can pay your medical bills, as it is to, say, hoard your money in your savings and, say, avoiding paying your medical bills. That and some healthy acting skills and what we, in the theatre, call subtext:

That's not coinsurance for an out-of-state CT of... every part of my body....that's a new pair of boots . . .

The checks write themselves much easier this way.

Other than that, ear update: Last night around 2, still awake because I didn't take my sleeping pill because I was still praying that the Benadryl angels would work their powers over my ears, I had a horrible pain in my head and for about five minutes fearing moving, and then went to the bathroom to make sure both sides of my face smiled. They did, phew. (this might sound funny but it is also true).

I awoke to less ear pain, but ear pain nonetheless. I avoided calling the docs and finally, after advice from CysticLady, decided to split the difference between calling and not calling, and email them. My doctor didn't seem highly concerned, and so, since I was mostly thinking this was a freak accident, and reading on CysticLife that all my homies thought maybe it was some sort of migraine, I decided, bah, let it go unless it gets worse/comes back and then off to the PCP I go.

I avoid my PCP at all costs. See this post for elaboration. He seems perpetually annoyed that I am his patient, and considering the annoyance that would go into switching PCPs while on two transplant lists (holy referral nightmare and insurance claim denail, batman!, for cry yie)- I decided to keep him and maybe teach him to buck up and accept some patients with more than asthma and an ear ache.

Oh wait, I have those too.

Ok- goodnight from me and Beckaroo. I leave you with this random image, inspired by Ronnie's random image blog today.

Pic of the Day

Number one reason that being at home is better than being in the hospital.

More later...

Health Update and Fun for BiPap Use

Weird Greek Model Style Porcelain Man Wearing A BiPap Mask.
Perhaps he has CF and high CO2

So things were sorta complicated this week, as I had two good sessions at Physical Therapy and was doing a good job of home exercise and meds and all that, as well.

Now, remember that when I was in the hospital in October, I ended up in the hospital because of hypercapnia, or high carbon dioxide levels, that were causing me to have severe headaches, delusional and illogical thinking, and a desire to sleep all the time (which compounded the problem). Eventually, this caused acute respiratory failure and I had to spend 5 days in the ICU reducing my CO2 levels using a BiPap machine, or assisted ventilation, to help me breathe more deeply and also clear my "used" air completely so that my CO2 levels would lower. I have continued to use the BiPap machine at home.

Okay- so then this Thursday, at Physical Therapy, I started to get the CO2 headache during exercise. The headache is a very specific, sudden, painful kind of headache that usually wakes patients up from sleep (like it did with me). It was striking me during exercise, which is odd. I went to the doctor that day, and my CO2 level had raised in one week from 63 to 86- not good, and most likely responsible for my headache. So oh no!

To see if this was a fluke, Dr U-Bird let me go home for a night and come back on Friday to see if my CO2 level went up or down overnight. Thankfully, it had gone down a bit to 75- good because the BiPap helped it go down, but bad because it showed that overall, my CO2 was increased from the week prior.

So there was a big debate and I was allowed to go home for the weekend with a change to my BiPap settings, to make them stronger, and with my CysticMommy to pay diligent attention to me. I will repeat the test of my CO2 level next week.


In the meantime, my oldest friend, S-Artee, is here visiting! I am supposed to stay on BiPap "as much as I can." Oh no! S-Artee is my very best friend for 29 long years, and I haven't seen her in at least 5 years. She is here to spend wonderful time with me!! We were, you know, planning to TALK during her trip. One problem when you're on the bipap, is that it is hard to talk through the mask. It is possible, but you have to talk really loud inside the mask, to be heard at all outside the mask. This is one reason that I burnt my voice out so badly in the ICU. I did not realize that I was yelling inside of the mask every time I tried to talk to someone, to project my voice through the airtight plastic.

This brings us to the weekend's theme: Fun on the BiPap. One fun thing you can do on the BiPap that involves little talking, is joke-telling.

Exhibit A: WARNING: This video contains cackling.



Exhibit B: WARNING: This video contains me wearing the BiPap which increases the pudginess of my face:) I am not this pudgy-faced in real life. :)



YAY!! Tell a lame joke with your best friend today!!

Love, Cystic Gal!

PS. I also have uploaded another video to count for yesterday's post. See below!

Hospital Haircut!

If you're in the hospital and feelin' sorta frumpy, try getting a haircut! I've been here for a month, and before that, I had only been out a few weeks! I feel like I've been here since August and my hair was suffering! Until today, I got a hairstylist from a shop in the hospital's neighborhood to come to my room and spruce up my 'do:

Word on the street is I might get out of the hospital tomorrow! YAY! I will start a pulmonary rehab program next week, and spend some much needed time at home with my cats and my Mom while wait to get the call to come back in for transplant surgery!! I hope it comes soon!

More soon,
CG

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

Back In the Saddle Again

Back in the hospital again I offer you the best sort of post that there is to post which is of course the post of
stream
of
consciousness
post post post postable
I am back in the hospital after a weekend of feeling very short of breath
very short of breath indeed more short of breath than I ever have felt
in my whole life long
over and over again
on the couch short of breath collapsing
on the bed short of breath laying
on the kitchen floor sitting down time for a rest
in the bathroom leaning over the sink just to brush the teeth I am short short short of breath which really means
I am gasping
or drowning
or both
trying to catch your breath when you have no room left to breath is just sort of
.
.
.
dot dot dot
useless as a metaphor.
you cannot catch something that doesn't exist is what I'm trying to say
how can you catch your breath
catch air out of the air
and put it into your lungs
where there is no room for it anyway
that's like trying to catch an elephant in your driveway and fit it into the trunk of your car
the trunk of an elephant's trunk wouldn't fit in your trunk.
not with all that junk.

i'll leave you with that bizarre thought for tonight.

i am in the hospital again but there is no need to worry. i just needed more oxygen, and it seems, some hydration, and of course, some IV antibiotics, and but of course,
a nap.

i miss my cats.

goodnight.

look forward to the first post by CLady, perhaps tonight!!

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!

The People Want What They Want: Lighten Up Already!

When you're feeling blue. Down in the dumps. Cranky Face Magoo.
There is only one thing to do:

DANCE!

And if the first time doesn't work . . .

DANCE AGAIN!
NOTE: The second take is easily 1.5 million times funnier / more embarrassing
than the first for at least 5 reasons.

Read tomorrow to find out what the 5 reasons are!

Tomorrow, I promise to follow up on all posts of recent!
For tonight, Just dance,
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'm Ok, You're Ok

Thanks for the messages and tweets sayin', "Hey CG, where you AT?!"

I had a poopy appointment at the doctor yesterday and I've been in a bad mood for two days. Hence, I have not posted anything. Yet, I am fine. More later today. I'm gonna try to write today while I do my meds even IF I'm in a bad mood about it.

So there.

And my cat is acting old and sick.

:( That doesn't help.

At the doctor yesterday, my anxiety was really kickin' in. Plus two drugs I'm on increase my blood pressure. So my blood pressure was high and we thought, let me take some time and CTFO, chill the f out. During this CTFO time, they brought me jelly beans.

Coincidence?

I think not.

More later.

Paparazzi, BACK T. F. UP!

Photo of me. :)

Dear CG Readers,

This is my 100th post. It is not just a cosmic coincidence that last night I was on the phone with my friend Kathleen Rooney, asking her, "I think I should stop being anonymous with the blog - Go public -What do you think?" (She agreed that I should and coached me through it. Big thanks, KR!)

The blog has been receiving some web mentions, one in particular for the "Unleash Your Story" fundraiser for the CF Foundation. I am going to be participating in this fabulous event and will write a post either later today or tonight outlining the event and inviting YOU, CG Reader, to join Team Cystic Gal! In the mean, time, read this article, and slay the dragon in your life today!

With love and non-anonymity,

Cystic Gal, ME

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

Picture of the Day

First day home from the hospital. Full report:

I accomplished all of my hospital related tasks. Only exception: I did pulmozyme once and hypertonic saline once. Did not do either of them twice. Figured, first day home after hemoptysis. Takin' it easy.

I worked out for 20 minutes and it went well. I wore my oxygen all day and the only time I left the house was to go to CVS (ahh!) and to go the vet to get antibiotics (ironically) for S-Purry^.

Wanessa (ahh) comes tomorrow. Last week, she must have thrown out my Yuckie cup. So today, I had to make a new one. My yuckie cup is where I put the yuckies. I like it better than little diseased dixie cups in my house or in my garbage cans. I put my yuckies in it, and then I rinse em down the toilet, then I squirt some sort of yuckie-killing household cleaner (whichever one is around) in there, and rinse. I take pleasure in writing YUCK!! all over my Yuckie cup so that I know never to drink from it, and that it is okay to clean it with household cleaners. Neither yuckie, nor bleach residue, should ever go IN. They only STAY OUT!!

Goodnight!
CG

A Poem From The Hospital

OxycoPoetry

Began the day with brushing teeth
Like other days, lungs gave me grief.
"Port placement will be first thing," they say.
I change my shirt, and I'm on my way.

Then pulse climbs high, O2 drops low.
The sweat starts seepin out.
Time for freaking-out-relief.
My lower lip begins to pout.

No valium says the nice P.A.
It will mess up your sedation.
Oh me, Oh my, "I'm freakin' NOW-
"Don't you see the situation!?"

Dr. U-Bird^ and his friend N-pregg^
came to have a calming chat.
Then ativan helped us all out
I was calm, and that was that.

In the scary surgery room,
I fell fast asleep and don't recall
They made some cuts and balloons and such
That is my memory, none at all.

I slept it off, my head did hurt.
My chest felt sort of odd.
I wake up later, groggy at first
Not too much to check my bod.

My port placement looks so super nice.
My boobs, I checked 'em double twice.
Not too high and not too low.
Sex'll be great and it still won't show. *in clothes

The day goes on and then it ends
Not yet going with the flow
I try to rest but feel awake
Despite the Oxycodo.

Love, CG