Tuesday, June 30, 2009

Munchausen by Kitty?

Munchausen by Proxy syndrome is basically when parents make their kids sick so that they can get some sort of attention. It has nothing, whatsoever, to do with CF. Except in this one blog posting. And barring any bizarro grad student papers or medical studies I may not have read!

CG currently tracking 300th Unique Reader!
Stay tuned! It should happen tonight!

CG responds to reader request from B-Tech^
"do away with the black background!"
"I can't read this!"
A new look for CG!
While I was on my Road Trip 2009, my pet nanny C-oockie^, came down with a case of Munchausen by Kitty Syndrome for my cat, S-Purry^. It all started in March, when Cystic Lady and I left on a cruise. At that time, Spurry was so distraught over my departure that apparently, he refused to pee or drink water while I was away. He got a really bad bladder infection and lost a bunch of weight during the kitty protest to modern veterinary medicine that followed. I admired his tenacity in refusing to eat his new vet-approved food, but poor Spurry, he lost 6 kitty cat pounds! Coockie, my pet nanny, has been concerned about poor Sprurry ever since. She emailed him twice.

When she arrived here last week, ready to cat nanny away, she was alarmed about poor Spurry's weight loss. She called me and left me a frantic message. I called her back and reminded her about Spurry's bladder infections, and told her to read my instructions, that he is under the care of his vet, and that he is on a special wet food diet to assure that he will get enough water while he gains his weight back.

This, apparently, was not enough for Coockie. She made a horrible cat nanny error. That night, she left out a huge bowl of dry food for Spurry. And you know what? He ate all of it. And then what? He got the poops.

She told me later, "I just couldn't understand why an underweight cat wouldn't have food available to him, all the time." Spurry, you see, is not a normal cat. He eats anything available to him, like a dog. Spurry is more of a dog than a cat. Spurry, in this house, is often called "pup pup" for this very reason. So, directions aside, Coockie gave my cat the terrible horrible no good very bad poops. And then what? She had to clean it and it and it and it and it up. Because she is the cat nanny, and I was on vacay.

Coockie could not then stop her pet nanny madness. She called me in a poop frantic state and declared that there simply must be SOMETHING WRONG with Spurry. It was not just the over-eating. He must be gravely ill. He must have the poops for a reason. The poops must always have a reason. Now, you CF readers know that of course the poops always have not one, but TWO REASONS. One of those is something complicated you must talk to a doctor about. The other reason is the food you ate.

I doubt that any of you that had the poops recently thought to yourself, "You know what I should do while my stomach's all fucked up? Go eat and eat and eat!" Poor stupid cat Spurry. Coockie put another bowl of dry food out for him, and made a vet appointment for the next day.

The vet told her that she had overfed him, and the vet ran a bunch of bloodwork to double-check if "SOMETHING WAS WRONG!!!" with Spurry, and the vet hydrated poor Spurry who now has a bald spot on his neck that looks funny.

What was Coockie's problem? Simple: she is a vet tech at a local cat emergency hospital. She usually sees cats when they are gravely ill and it is off-hours. She usually sees cat owners when they are in a state of panic/grief. And she put all this on my poor Spurry and created a situation where he was sick because of what she did, and she was the only one that could "save him" by taking him to the vet. She even sent me an email today saying, "I'm so glad our 'Spurry' is doing well. Where do we go from here?"

NOW-what does this have to do with CF?

One of the things that I struggle with in CF is the fact that like Coockie, I am usually at the hospital only in extreme circumstances. I had avoided it altogether for about three years until this past one. So when I'm there, I literally make myself a little sick by getting too "in my head" about the experience. I think things are wrong with me that aren't, and I have trouble accepting the things that ARE wrong with me. I get mad at people who are talking to me reasonably. I get a little Coockie.

Which is only one o away from Cockie, and only an "ie" away from being a total Coock.

The other similarity is that Coockie has experienced an endless cycle of kitties getting really sick and some of them getting mostly better, while others never did. In CF, we have personally experienced so many cycles of getting sick and getting better, or getting sick and NOT getting better, that it can be difficult on a given day to really gauge what is going on, in reality, not in our coockie future planning, or our coockie pasts.

If any of this sounds familiar, please email me at cysticgal@gmail.com or post a comment below. I would love to know, do you ever over-do it because you can't remember that you're sick? Or do you ever lay around all day even though you feel fine? Do you ever go to the doctor thinking they'll definitely put you in the hospital, and then your PFTs are good? Or go in thinking you are great, and it turns out, you're totally sick? What's your story, Cystic Peeps?

Tomorrow's Topic: One Coockie Day For CG

Goodnight from home,

Monday, June 29, 2009

The "Naming" of "Things"

"Okay, Ms. Gal, I hear you don't feel well. I think it might be time for a runaway truck ramp . . . "
"CG" welcomes readers from 3 new states:
Idaho, Connecticut, Virginia!

Only 29 states to go!

On my way home from Road Trip 2009, I saw this:

and indeed, a ramp on the side of the road went up a steep hill with a service station at the top. This got me to thinking . . .

When I was a kid the doctors called going into the hospital with CF a "tune-up" no matter how sick someone was. You could be REALLY REALLY sick like my sister was sometimes, and they would call it "a tune up," or you could be vaguely sort of ? ill ? and hadn't been in the hospital in awhile, and they would call it "a tune up."

I believe this false branding was the very beginning of my anxiety about doctors. I mean, if they were going to go with the whole "car" metaphor, they really should have differentiated, "Well, CGal, you should consider getting an oil change. It will help your sinuses," or "CGal! You need a tow truck now or you're going to lose a lot of blood! Nevermind, CGal, we've got to get started! TOW TRUCK!!"

Either way, "tune up" was never the right way to describe going into the hospital for CF. This name implied that you would go in to the "service station" in the morning and be done by the end of the day. This name implied that you would definitely feel better at the end. This name implied that there was nothing actually wrong with your "car" in the first place, you were just being a responsible "car owner" to get a "tune up." And the the most untrue implication of all, the name implies that the cost to you will be very low.

What a lie.

In any event, if hospitalizations are meant to be like tune-ups, I would like them to be more like this: so that the maze of life can keep going by on the left, and you can pull off to the right, all crazy with your health out of control, and then a team of dudes and chicks will work on your "car" really quick because they know you can't stay at the top of a steep hill on the side of the "road" forever. When you're all fixed, zoom zoom zoom you go, back into the fast lane. Merging away and no one even notices. Maybe you don't even have to drive your bunk-ass truck anymore. :)

(please disregard blatant overuse of metaphor and quotation marks to "prove" my "point.")

P.S. CGal is writing from HOME tonight. Tomorrow's topic: "Munchowsin's by Kitty?"

Sunday, June 28, 2009

I Still Haven't Found What I'm Lookin' For?

From The Road:
Now you can REALLY get "CG" straight to your inbox!
Click to the left!

I accomplished a lot on this trip, on the one hand: I spent a lot of time with my brother, CSibling; I spent a lot of time with my sweetie; I spent lots of time with my best friends including L-VIPie,^ and A-Dramie,^ as well as a lot of other older friends in my hometown.

On the other hand, I did not accomplish a major goal of my trip, and in this failure I realized one important thing: I hate talking about my health. Ironic, isn't it? I started this nightly blog about my health (and lack of) and its affect on my life, but in person, IRL, as they say, I hate it when the topic comes up and I hate EVEN WORSE bringing the topic up myself. When I started off on this road trip I had this idealistic fantasy of having frank, open discussions with CSibling, sweetie, L-VIPie and A-Dramie. I wanted to spend some time discussing where my health is currently and that I might be considering transplant in the next year or so if my health continues to decline at the same rate it has in the last year.

Instead, I avoided the topic most of the time, per usual, and even changed the subject the few times it came up. So, GREAT. Most of the time, I was having a lot of fun, or felt that I was about to have a lot of fun in a situation, and really didn't want to pause/ruin the impending fun with a big discussion that would surely upset me more than my discussion-mates.

Clearly, I was also experiencing a lot of stress on this trip because I had really bad dreams last night, which I will leave to be the subject of another blog post . . . More on THIS topic in the future as well, as I end one of my last from-the-road posts.

I hope to return home tomorrow, but we'll see. . . I still have a long way to go and I'm committed to resting and not hurrying a bit on this trip.

Love To All!

Saturday, June 27, 2009

My Lungs Aren't On My Face

Now you can REALLY get "CG" straight to your inbox!
Click to the left!
sorry for delay

This will be a very short post but I must certainly reserve my CG rights to use that title again when I develop this thought further. "My Lungs Aren't On My Face," has become one of my favorite things to say lately. I always get a laugh for it, and the reason I get a chance to say it so much is, in short, I have had a really really bad year. Almost every person I see says to me, "But you look great!" which is a great complement, and I'm happy to take it. And I DO, indeed, look really great! :)

Ironically, however, I'm having the hardest time with how this disease is now affecting my day-to-day doings and wondering if it wouldn't in some way be easier for me if I actually looked sicker right now? Maybe then I would have an easier time remembering to take better care of myself as the day goes on, and maybe the people in my life wouldn't be so confused about how I am making my decisions differently lately.

Ugh. A big topic to bring up before bed, but just like the writing above, I have to go to bed and try not to worry too much if you guys understand why or not- I'll have to explain it more tomorrow. Goodnight!

With love,

Friday, June 26, 2009

Magnum Opus CG:

A brief mission statement on the purpose of this blog and summer writing project.

CG currently tracking 200th Unique Reader . . . Congratulations, Chesterfield, Missouri!

I'll start by saying that I don't seem to be sure how to articulate my mission, yet. I hope that by the end of the summer, through writing the blog, I will come to discover where my writing is headed. Here is what I know so far . . .

Three Things I Don't Want This Blog To Be:

1) A personal diary. I do not plan to tell you where I go and what I do unless there is some more Cystic-Gal-related reflection in the storytelling. I am realizing, already, that this is the hardest rule to follow. However, I really want my blog to be about how CF affects my day to day experiences - not just my day to day experiences in general.

2) A rant and rave type of page.
I don't want to just be needlessly throwing thoughts out there without thought for the real life relationships I and others have. I am still struggling with maybe removing my Asthma-pal post for this reason.

3) An over-simplication of CF, either positive or negative.

Five Things I Want This Blog To Be:

1) A place to get feedback on the writing.
In the theatre, we would call this an open reading of sorts. An initial place to track reactions and interest to the topics and my dealings with them.

2) A place to e-meet people with CF and their loved ones, particularly other "Cystic Gals" out there.

3) A place to express parts of my story with CF that I have never told, or that I have rarely shared with people in my life.

4) A tool for dealing with my anxiety regarding the medical community. I express myself best through writing, but I have come to realize that without a true audience, I do very little writing. Journal Schmournal, I say. I need a reader. Congratulations, it's YOU! I must say, I am least excited about this aspect of the blog, but it is an honest purpose
of the blog, so I must list it.

5) Funny and Balanced. I w
ant people to enjoy reading my blog even if I am dealing, at times, with heavy topics. I want to keep a balance in my writing.

That's what I know so far . . . I'll update at the end of the summer. In the meantime, speaking of feedback, what do YOU hope to GAIN from reading this blog? Reminder! CG offers anonymous commenting . . . oooh! intriguing!

Thank for reading,

Thursday, June 25, 2009

From the Road: Reader Question

New Stat! 42% of CG Readers spend more than an hour on the site when they visit!
I must be writing something worth reading since new readers are reading it up! THANKS! I'll keep it up if you do! Don't forget to click around. Lots of new stuff to the left and sometimes, even, below!

Missed Post = Extra Post! Added a post for last Monday (the day I missed while driving). It's a link to one or two of my favorite CF bloggers in their active discussion about transplant. Check it out below!

KR asks where I took my lovely picture below from. The answer: Somewhere in NY state. I decided, foolishly last Sunday, to leave at 5:30PM because that is how long it took me to do all my morning things (listed below) plus all my packing things (alluded to below). I decided, "I will drive until it is truly dark out, and then, drive for an hour after that. One hour of in-the-dark-driving is enough for me."

Good point to this plan: I was driving into the sunset, which was very very pretty and pinky and purpley and a good way to start a trip. Bad point to this plan: It doesn't actually get "dark" out until about 9PM when you're driving toward the sunset and using the question, "Can I see the clouds meeting the sky?" as your guidepost. I declared it "officially dark out" around 9PM, and then drove 'til 10PM. THEN, I found at hotel. All in all, a silly way to start a trip because I was exhausted by the next day.

I have since recovered with a little quality time with CSibling and old pals.

Live from my hometown,

Wednesday, June 24, 2009

Good Traveler (GT) versus Cystic Gal (CG): SMACKDOWN

Top Ten Differences In Traveling
as fictitious "normal" ideal world author lady (Good Traveler), and
as CG: who I really am.

1) Good Traveler packs light. CG needs lots and lots of stuff.

2) Good Traveler gets up early. CG sleeps in late.

3) Good Traveler leaves no later than an hour after waking. CG takes all the time she needs to clear the airways. (long time.)

4) Good Traveler says, "any hotel, fine by me." CG says, "Treadmill?"

5) Good Traveler says, "I got the bags." CG says, "Can you help me with my bags and o2-maker thingie?"

6) Good Traveler takes 1 or 2 days to go "17 hours" according to mapquest. CG takes three.

7) Good Traveler drives ALAP (as long as possible) before stopping. CG is hungry, say, every 2 hours :)

8) Good Traveler wants to stay out late with old friends. CG wants to go to bed early though she adores old friends.

9) Good Traveler walks through town romantically. CG says, "Is there parking? I'll meet you there," and wonders what could have been. Feels bad.

10) Good Traveler loses. CG wins.

WHY? CG writes this blog.

Goodnight from the road,

Tuesday, June 23, 2009

CG: bad a travel

This is a quick post because I am secretly posting while my brother is outside smoking of all things...that's another post entirely.

Ok! It took me THREE days to get somewhere that is should have taken TWO. But my resting 02 is UP to 95/94! YAY.

More later. . . he's back . . .

Monday, June 22, 2009

A Blog I Like & A Topic I'm Dealing With

Dear Readers, I missed a post on Monday! I'll take this missing date as an opportunity to lead you to read this post:

Run Sickboy Run: Lung Transplant or No Lung Transplant?

by a CF blogger I like, about a subject I will likely be tackling here on this blog. Let me know what you think!


Sunday, June 21, 2009

Cystic Gal Goes On A Journey

This was much prettier in the sky than it came out on my camera-phone. Alas, technology is what it can be when you're driving AND playing photog. That's right, loyal readers, I'm going on a trip to see some family, friends, and a sweetie :) I plan to continue to write daily posts but I thought I would alert you to my plans.

Readers, I am going to keep my commitment to write a post nightly. That way, I can really get the ball rolling on this CG writing project and let YOU get to know me in the process. Unfortunately, this commitment to nightly output means that the posts can't all be as witty, lengthy and connected as the "Eminem / Michael Phelps / Lung Capacity" post below. However, I think you'll appreciate hearing from me every night just the same.

Here are the current titles of articles I AM working on and will reveal when fully developed:

"Magnum Opus CG"- A brief mission statement on the purpose of this blog and writing project.

"Where Did You Come From, Where Did You Go?" - CG writes about her youth with CLady and CSibling, and how the way she was raised impacts her CG ways.

"Only You, Babe" - CG writes about how CFers seem oddly focused on artistic fields and expressions, including CG's own career path.

SIDENOTE: You will read in "Magnum Opus CG" that the real real real first idea for this blog came from a national conference presentation I did in my OWN REAL career field two years ago. I would tell you the title of the presentation, but then my identity'd be OUT . . .

"____________ Syndrome: What can IT do for YOU?" - This one is too scandalous to write the whole title here without publishing the full article!

"Any Sort of a 'Love Feeling'"- This article centers around a quote from Cystic Lady and you can probably guess what it's about.

Ok, ya'll. Goodnight! I'll write to you again, from the road.

PS: I always enjoy receiving questions. Email cysticgal@gmail.com or leave an anonymous comment to ask a question! These would make perfect simple posts while I'm traveling!

Sleep Debt: Forget Finances, Get Me A Pillow!

NEWSFLASH! "CYSTIC GAL" Exceeds 100 Unique Readers! Keep up the good work.
You can follow and comment on "Cystic Gal" Anonymously. Email cysticgal@gmail.com with questions :)

This will be a short post, which is only appropriate because of its topic and timestamp. I recently finished a course of IV treatment with 0 days spent in the hospital thanks to Dr. U-Bird^ (see forthcoming entries for an explanation of this pseudonym-and if you're reading, Dr. U-Bird, rest assured this pseudonym is derived from only kind postings and ideas to follow). I think the course went well with this exception: I did not get enough sleep.

When I'm on home IVs, I usually have to take one of them every 8 hours. Sounds reasonable, right? So I take one at say, 11PM, and one at say, 7AM. Sounds good. But if I stay up til 11 to take the med, then it takes about 15 minutes to finish, THEN I put I head to pillow, THEN I fall asleep around midnight, the question is: WHEN DO I HAVE TO WAKE UP?

Despite what you may have assumed about my sunny funny CG attitude, I'm barely a human being in the morning. When I wake up, the order of events is as follows:

1) Have heart to heart with kitty
2) Take inhalers
3) Press "on" button on recently purchased cheap-ass coffeemaker lacking programmable timer
4) Feed kitties
5) Eat tasty morning treats trying not to fall asleep on couch
6) Watch humans talk on television, re-learn English language while drinking coffee
7) Take nebulizer(s)
8) Cough my f'in brains out (and sometimes the coffee too)


9) Accomplish anything more complex than the above such as
10) Do IV medication

I mean, it goes in my veins, people! I better be awake when I'm trying not to screw it up.

In order for this to happen around 7AM, I have to wake up around 6. That's only 6 hours of sleep, which was enough for my younger, more-robust self. But nowadays, I need like 8 or 9 hours to stay nice.

So now, two weeks later, I have a sleep debt to pay off and today I put in one long nap as a down payment. I feel the repo-woman coming . . . it's me!!


Saturday, June 20, 2009


Congratulations, Quincy Massachusetts! Whoever you are, you win a set of steak knives!!*

*I have no plans to give this stranger in Quincy any knives.

More later...

Friday, June 19, 2009

Eminem: The Soundtrack of American Medicine AND good for lung capacity?*

A Humorous Look at Music, Medicine and Michael Phelps

"CYSTIC GAL" Welcomes First Neighbors to the North - Hello Alberta!
NEW in CG: Readership Stats! We're really growing, CG community.
Keep up the good work.
You can follow and comment on "Cystic Gal" Anonymously. Email cysticgal@gmail.com with questions :)

I know what you're thinking: Cystic Gal, what the h are you talking about? Em-in-em? What does a white rapper have to do with Cystic Fibrosis? Stay on message, CG. Stay on message.

One of the many things I have learned in the past two years, while tackling my fear of doctors (see future posts) (oh wait, you can't see the future, you can only see the past posts) (oh . . . CG scratches forehead, pondering . . .) . . .

One of the things I have learned in the past two years is that it helps me to detach myself from the medical experience as much as possible so that I can think clearly while experiencing it. I was told that these things could help: "trashy magazines" (i.e. ones that cover "Jon and Kate Plus 8," not ones with multiple x's in the titles); I-Pod tunage; texting my pals; Valium (see prior posts! There we go!); bring an IRL in real life pal; etc. Today I will cover the best one of these tactics found so far:

Medical I-Pod Tunage: CG's Advice

The key to finding a soundtrack for your personal medical experience is to name at least three emotional states that you commonly experience in the medical environment. Are you sad? Are you confused? Are you angry? Are you a smartie pants? Are you nervous?

Narrowing down your complex emotions may be the hardest part. After that, finding some sounds that match is pretty easy. Which brings me, your CG, to Eminem.

There is something about Eminem and his self-loathing yet self-aggrandizing adolescent bullshittery, set to the backdrop (usually) of both a serious bass sound and an 80's style electric guitar, that really suits my CF clinic experience. All this with rhyming and the occasional random country singer guest spot that none of us clearly understand.

Other musicians that do it for me: Guns N Roses; Greenday; The All-American Rejects; Tom Petty and the Heartbreakers (actually, any Tom Petty time period); Pink, Snow Patrol; MGMT; Death Cab For Cutie; L'il Wayne

My sister, Cystic Lady, became particularly fond of Eminem herself during her transplant experience in 2003. She would listen to Eminem at pulmonary rehab, in the car to and fro, and around the house. She would listen to him so much that my own mother, who otherwise prefers Fleetwood Mac, now admits that she misses her Eminem days with my sister.

To summarize, in my brief blog-research and IRL experiences, I have come to know that Eminem is a common IPod favorite of transplant patients and Michael Phelps. What do we learn from this? Obviously, it only takes a little bit of simple math to prove an important, inspiring truth.

Michael Phelps = Freakishly Large Lung Capacity
Michael Phelps = Love for Eminem
Love for Eminem = Good for Lung Capacity*

I'm no mathematician, but the facts are the facts people.
Be well, CG

Tomorrow's Topic: CG's Mission: A Work in Progress

*Obviously, I totally made this shit up people.

Thursday, June 18, 2009

"Hey CG, are you a PG?" : A Little Q and A with the Cystic Gal


"CYSTIC GAL" READERSHIP CONTINUES TO CLIMB! CG Welcomes First International Readers - hello to UK and to Turkey! What's next, Mars?! You can follow and comment on "Cystic Gal" Anonymously. Email cysticgal@gmail.com with questions :)

READER QUESTIONS: A new segment brought to you by CG. If I get an email or IRL (in real life) question, I will address it here.

QUESTION 1: CG, why won't you reveal your identity?

Interesting question, world at large. My dynamic plan is to settle into this unknown blog-world I've heard so much about and to know more about what I'm getting into before I start revealing who I am. My pledge to you is that I will post a picture of myself, and PERHAPS reveal my true identity on the date of my 100th post. :)

QUESTION 2: CG, can I comment without people knowing it is ME who wrote THAT?!
Yes! The settings on CG are such that I do allow anonymous following and commenting. Although I, the all-knowing CG, will be able to tell some of your stats, like where you're writing from, I won't know your name in particular unless you tell me it or join as a "public follower."

QUESTION 3: CG, how do you know so much about your readership? Are you really a PG? Psychic Gal?
No, sadly, I do not possess the PP, psychic powers. However, I was led by one of my writer
cohorts (and an editor for X-named big gigantic publishing company) (uh...also a friend from high school). She told me to add something called statcounter. It is a free secret information collector thingie that I can log into. Statcounter, it seems, is truly P, and it provides me without a lot of useful info such as maps of my users (HELLO TURKEY!!) and info about how my readers found my page.

CG, Where's the high quality post we expected after last night's "to be continued..."?
Funny you should ask. It turns out, all my putzing around with fonts and PPStatcounter took a lot of time, and now I must to bed to my overnight oximetry study!! Also, One of my new blogger buddies was going through a hard time today and this is what I wrote to her:

"Hey, Girl. I can't believe it's almost midnight and you posted this at 7ish and you don't have any comments yet. I'm just reading it now, and you know what? Get angry. There is a saying in feminist politics (not that this is a feminist blog-it, duh, has another theme), GET MAD AND STAY MAD. The idea is that a little madness is required to get the job done. You're getting the job done, staying healthy and fighting through the rough spots. And no you don't have to be in a good mood by tomorrow if you don't wake up that way. You do what you need to do and take out your anger on the treadmill while you're at it. Somedays you just have to tell CF to suck it. Good job doing so!"

Obviously, constructing this hopefully helpful comment-to-a-stranger took some of my usual blogging time away from all of you, my loyal CG readers. And so, I share it with you! More tomorrow.

Tomorrow's Title: "Eminem: The Soundtrack of Medicine?"

Goodnight, CG

Wednesday, June 17, 2009

Just the News.

NEWSFLASH! "CYSTIC GAL" READERSHIP UP 2400% Since Day One!! no kiddin', man! CG Welcomes First Readers From West Coast - hello out there! CG HAS GONE NATIONWIDE!

ALSO: You can follow and comment on "Cystic Gal" Anonymously. Email cysticgal@gmail.com with questions :)

It has been a long day. I will have to write to you eloquently tomorrow (uh...hopefully). The news is, I got my PICC line out using the bartering techniques of Cystic Lady (my sister) and also Valium (see previous post.) There is much MUCH more to tell, and alas, I am tired, and must tell you tomorrow. I had a great dinner with T-Money^, H-Mama^, and I'll just say it, a margarita too.

Love, (and hot showers!)

*Cystic Gal is bad at math

Tuesday, June 16, 2009

Valium: A Med That Makes My Day (or night)

* Since Day One

Ok ok ok. Most people probably wouldn't want to write on the internet that they take valium. But that is one of the great things about this mostly anonymous blog, heh? I planned to publish tonight's blog about anger, in response to KR's response below. Then . . .

I had a reallly bad day today
I slept til Noon for no real reason and missed one of my meds. Recently I took an internet quiz and in response to "Last time you slept in late, what was the reason?" my response was "Could not muster will to live."

This, indeed, seemed to be my reason this morning. Also, it's been freakishly cold out. It's hard to get out of bed when it's cold out!
I did not get out of the house until about 5pm. Problem? I didn't have anything to do. I did not have one single place to go. I drove around ruining the planet until it hit me :

Surf and Turf

What I needed to perk up the day was a piece of meat next to some fish next to some mashed potatoes. And a pal. A few phone calls later and Ta Da! I have a pal to accompany me. T-Money^, in fact. We had a lovely meal together and I'm driving home, wind in my hair, looking forward to getting my PICC line out tomorrow. YAY! Freedom! Long hot showers, short sleeve shirts, and unencumbered make outs with my sweetie, here I come! This fantasy builds and builds (truthfully, mostly the shower part) and I drive along home . . .pull in the driveway. . . .reach my porch and see . . .

Two huge boxes from the home health company. I knew instantly what they were: a week of medicine for my little teeny tiny veins :( And, well, I freaked out. As my friend K-Ed^ would say, I flipped my shit. Thank goodness for me, I have a sister! That's right, CG users at large, I'm revealing some personal info. I have a sister, also a cystic gal herself! She talked me down from the mountain of feelings I experienced by asking me one simple question: What's the worst thing that could happen here? And you know what, I had all the answers:)

Unfortunately for me, I also had a high heart rate and had worked up a sweat and some tears. So I turned to my old sleepytime pal, Valium. He's always there for me and frankly, I wish I had met him earlier in my life. I have had anxiety since I was a little kid, and worked through it for years and years much to the torment of my friends and immediate family. I never took meds for my anxiety until about 3 years ago, and they have been life-changing. Now I can do some things I couldn't do before:

Sleep; Wake; Think Clearly When Obstacles Arise; Make Big Decisions; Not Cry For Days At a Time; Not Break Stuff.

This was not always true!!
Ok, more later. The thing about valium is, it makes you sleeeeeeepy!!


Yesterday I transformed from Cystic Gal into Blog Crazy Gal. I was editing my prior posts and changing my fonts and colors and whatevs, all day long! I don't know how that affects you, my Cystic Gal Fans :) What if you received a million emails every time I posted a change?

oh me oh my so sorry!

Today I'm going to edit and play with my one post all day and then put it up but once ;)

Thanks for you comments and membership so far. In one day, my following has increased 600% and perhaps 700% if I count on anonymous reader. Yay! More later...


Monday, June 15, 2009

The Morning After

So I shared my first rant on "Cystic Gal" yesterday, just as I gained my first four followers: three that I know personally; one that I do not. Almost immediately, I felt so bad about my rant. I thought, oh great, now those four are never going to read my blog again. I mean, who wants a downer? Though I tried to share some humorous words and I found my chosen pseudonyms to be funny as well (T-Money in particular is pleased with her pseudonym IRL in real life), I thought
oh me oh my I have started on the wrong foot
why am I so angry about my disease right now?
I used to be so much more worldly and global and kumbaya in my thinking. But not this year, or last year for that matter. These years I've mostly been angry.
Then, this morning, when on the phone with my sweetie, I had to hang up on him. I had the worst coughing fit that I have had in months. It lasted minutes and minutes (which might not sound long but a minute is LONG when you can't...uh...breathe) and was the kind where you almost puke and you cry a little bit and you get all sweaty and maybe you say the F word a few times and your friend is on the phone on mute thinking maybe you passed out on the bathroom floor which adds to the drama.
And I was really really angry.
I probably won't remember this coughing fit a few months from now, the next time I ask myself:
Why am I so angry about my disease?
More later...

Sunday, June 14, 2009

You Gotta Know When to Hold 'Em

Ok, I really really really didn't want my first blog on here to be a rant. But here goes.

I'll begin by employing the Letterman Method:

Top Ten Reasons that Asthma and CF Comparisons Annoy Me

[This post was posted, then removed, then posted, then removed, and it's ba-ack, by popular request. It's not a great attribute to our current culture that we like the negative emotions more than the positive ones, but it is an attribute. It is. You ask, you receive. The original Asthma Rant. Love, CG

“You Gotta Know When To Hold ‘Em”

(between an Asthma pal and a CF pal today on the phone)
(also last week and the week before that)

(also many times over my lifespan with other Asthma pals)

10. Asthma kills very few of the people that have it (3), while virtually everyone who has CF will die from it or from complications resulting from it, whether pre or post transplant (3, FORTHCOMING).

9. 20 Million people in the U.S. have asthma(1). Boy- that's a lot! That's 400,000 or so in each state! Approximately 30,000 people in the US have CF (2). Asthma, though challenging, is relatively common. Commonly experienced. Commonly discussed. Commonly understood. CF is none of those things.

8. Asthma-like symptoms are only one component of CF. Hearing comparisons of someones last asthma attack to my Teeny Tiny lung capacity is like hearing somebody tell me about the morning after a bad burrito in comparison to my nutritional issues.

7. When CFers share that they're having a hard time, like other people that have a hard time, they just want someone to listen, not make constant comparisons. Recently my friend T-Money^ literally sliced part of her finger off in a freak moving/unpacking incident. When she called me to go to the ER with her, did I regale her of the time I cut my hand opening a string cheese when I was ten, interjecting, "I know JUST HOW YOU FEEL," over and over again? No, I said, "I'll be right over. Which hospital?"

6. Not for nothing, but your meds don't compare to my meds. Get over yourself.

5. Since you go to ER to get a "z-pack" and a nebulizer treatment, I guess I'll have to start referring to my house as the Emergency Room and my couch as "Curtain 3." I guess that would also make my cat B-Kitty^ a resident, while S-Purry^ would be the nurse. And I'll need to get some carbon paper intake papers for the front door and some of those "no inferme" signs to ward off the swine flu.

4. The conversation ends with YOU saying, "Okay, I gotta run to the gym and the grocery store and I have a party tonight but maybe I could stop by sometime next week...oh I'm not sure, I've been really busy and my asthma's really keepin' me down." I can totally tell.

3. It is somehow impossible for me to get out of this conversation without sounding like a biotch.

2. I adore looking back on the days of my early early childhood when questioned about my health I could pass off my illness as asthma and kids would shrug and say, "Oh, my brother has asthma" and continue to invite me over. By fifth grade the question changed to "What's wrong with you?" and my asthma excuse was gone baby gone. Also many playdates.

1. I can't go to the regular gym because my o2 tank doesn't last long enough. So thanks for braggin' about that particular errand.

*I am the CF pal
(1) Available http://www.aafa.org/display.cfm?id=8 06/15/2009.
(2) Available http://cff.org 06/15/2009
(3) _Trends in Asthma Morbidity and Mortality_. American Lung Association, Epidemiology and Statistics Unit, Research and Program Services Division. January 2009. Available http://www.lungusa.org/ 06/18/2009

Okokokok. I really didn't want to start on a rant, but there it is.

With actual love, because I do love my Asthma pals,

*I am the CF pal
(1) Available http://www.aafa.org/display.cfm?id=8 06/15/2009.
(2) Available http://cff.org 06/15/2009
(3) _Trends in Asthma Morbidity and Mortality_. American Lung Association, Epidemiology and Statistics Unit, Research and Program Services Division. January 2009. Available http://www.lungusa.org/ 06/18/2009

. I really didn't want to start on a rant, but there it is.

With actual love, because I do love my Asthma pals,

Possible Topics for Cystic Gal to Tackle

The CF Breakfast
The CF Morning
CF and Sleeping (or not sleeping)
CF and friends
CF and boyfriends
CF and Pets
CF and Jobs
CF and Childhood
CF and Parents
CF and Exercise
CF and Zoloft, Valium or other Meds That Make My Day
CF and cleaning
CF and oxygen

What else should I yammer on about?

Saturday, June 13, 2009

Breaking News, Already!

This is a great NY Times article with videos about CF! My comments on the video will be below . . .


1) The first thing that notice about these videos is that CF people's voices have some similarities. A certain sound in the voice that is deeper than normal, a certain rhythm to the way the person takes their breaths within a sentence. It's neat. The women sound just like me, I think. (?) I can't tell if their voices are lower than other women's voices, or higher. It's strange. But I like it. I often wonder what other people think about my voice, if they even think about it. In my line of work, I think about my voice like 50 times a day. But then . . . you don't know my line of work, now DO YOU? Hmm...I'm suddenly realizing I should tackle this topic again once you know more about my identity!!

The First Day of the Rest of Your Blog

Dear World,

I am the Cystic Gal, and I will be spending my summer sharing my thoughts on CF and life with you. Like a lot of CF patients, I have always had a dream of people understanding my story - so here is the place where I will tell it.

I thank you in advance for reading it! Please feel free to comment or share this blog with other patients, friends, or any interested reader.

Thanks! CG (Cystic Gal)