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Showing posts from June, 2009

Munchausen by Kitty?

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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! ***************************************** NEWSFLASH! 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 infe

The "Naming" of "Things"

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

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

From The Road: Newsflash! 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 migh

My Lungs Aren't On My Face

Newsflash! 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 s

Magnum Opus CG:

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A brief mission statement on the purpose of this blog and summer writing project. NEWSFLASH FIRST! CG currently tracking 200 th 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.

From the Road: Reader Question

DOUBLE NEWSFLASH! 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, whi

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'

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 . . .

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! -CG

Cystic Gal Goes On A Journey

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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. "

Sleep Debt: Forget Finances, Get Me A Pillow!

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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

CG CELEBRATES 100th UNIQUE READER!

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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... CG

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

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A Humorous Look at Music, Medicine and Michael Phelps NEWSFLASH! "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 coul

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

NEWSFLASH! "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

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!) CG *Cystic Gal is bad at math

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

NEWSFLASH! CYSTIC GAL READERSHIP UP 900%* * 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 pie

Blogiquette

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... CG

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 and 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. WHY? 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...bre

You Gotta Know When to Hold 'Em

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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- t

Possible Topics for Cystic Gal to Tackle

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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?

Breaking News, Already!

This is a great NY Times article with videos about CF! My comments on the video will be below . . . http://www.nytimes.com/interactive/2009/06/10/health/healthguide /TE_CYSTIC_FIBROSIS.html 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

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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)