News and Mask Up to Meet Up

This is a quote from the Conan O'Brien farewell speech, and it is a pretty good motto. T-shirts, anyone? This is my motto for the hospital too. I have a lot to do while I'm in here - like finalizing my proof the book, accept purchases of the book, promo the book, start a second book... (you get the picture...am I overly excited?)

Also, have to coordinate travel to [second tx center]. Had a great chat with tx center PA here, one I love, I'll call her.... C-Meddie, for the town she is from and her job. C-Meddie said it's great to be on two lists and play the odds against each other. See who comes through first, make no commitments, like having two boyfriends. I said, C-Meddie, you know me so well!

The other big project while I'm in here: get better! Still having some streaking, so I'm not out of the woods, or out of the jail, yet.

Tomorrow! ! ! Famous blogger Amy is coming to meet me. She is going to start seeing my team here at [I'll let her blog tell you], and I am so excited. After her appointment she is going to come visit me and check out her future digs at this hospital! This will be the first ever Mask Up To Meet Up event in my life. I have this idea of making this a big event down the road, like ordering crazy cute masks and having a big picnic or something. Super. Not a project for now, I know. Too many projects already. And all done while sitting! :)

More later... cg

Still in Jail

But worked on my book all day except for when my Muzz came to visit, I talked on the phone with my friend Lucy^, saw T-Money^, and JO came over to watch the Oscars!!

Here is the new cover of my book! I am so psyched!!

Health update: no bleeding yesterday, but then it came back today right before I was going to take a walk outside in the super weather. I was afraid to aggravate my angry lungs, so I did not go. Hopefully, tomorrow, I'm all clotted off or whatever and can have a normal day- maybe go home Tuesday!!

That's all, homies!!

Here is What I Know

Being in the hospital on a Friday is usually craptacular.

Waiting for your bipap to be set up when you've been awake most of the night and since about 6 is even worse.

I am cranky.

I am sleepy.

I don't think I'm allowed to sleep without my bipap.

My lungs were bleeding yesterday and today, so I'm back in the hospital.

Don't be alarmed. I'll call you later (note to the homies).

Also, all apologies if this offends, but as the picture above shows, in my 12 years as an official adult with CF, I have yet to experience a CF Adult Clinic nutritionist who contributes a single new idea or dare-i-say conversational phrase to the process that is my hot bod. ;)

Goodnight.

Patient Access Network Foundation

Here is a really great resource for those cg's out there (or cboys or transplant patients in general, or actually a whole list of chronic expensive diseases)-that are having trouble paying for medications, whether due to lack of health insurance, high copays or co-insurance, or medications being denied by insurance as experimental or non-generic.

The Patient Access Network Foundation

They grant temporary benefits, in some cases, while verifying your financial resources- so this is a great resource to go to for short-term /emergency aid while other agencies might be stalling you. They have coverage for CF, transplant, diabetes, and a whole list of covered diseases.

(I have no professional or medical relationship with them, btw, just putting some info out there!)

L'Chaim!
CG

Awesome Day Today

Today I went to Red Spot Printing and though the fumes of the old printin' press were a little hard to muster before we moved into the glass office, I had a rad time picking out the pretty papers and binding and doodley dads for me book!

Then, I took my car to the awesome Tom Lyons Tires (and other automotive razzmatazz), because oh nos! I thought somethin' was wrong-o with my car-o. It was making a clunketty clunk noise when switching gears yesterday. Nothin' wrong-o, says Mr. Tom-o. (err... they looked, and saw nothing, drove it around, and say, it's okay now!)- best part: No charge. Thanks Tom Lyons!!

Then I came home and received a crazy sleep outfit from my sister which I did uploadeodoe.

Then I emailed my ars off with an author named Patrick Randolph about a book called EMPTY SHOES. This Patrick and I wanna have our poetry reading together. His book- about homelessness. Me book (and why am I Irish today), about waiting on The List- what do they have in common?

Navigating complex social systems while enduring the most challenging emotional experience of your life. Should make for a great night! Err... at least a lot to think about!!

Super. Gotta go write a poem about...oh dang, I'm not gonna tell you.

CFF and attention to adult CFers

I already asked about this on CysticLife, so don't feel like you need to reply twice- but here is what I wonder . . .

An issue came up in my cysticgal.blogspot.com inbox, and I am preparing to write about it on the blog. So I thought I'd ask you guys,

Do you believe the Cystic Fibrosis Foundation serves adult patients? If so, how? If not, why not?

What would you, as and adult patient, desire from the CFF?

Do you think that the CFF promotes healthy, authentic images of CF adults and children?

Do you think that the CFF promotes authentic, effective ways to parent CF children into independent, healthy adulthood?

Last Days to Order "Unto the East"

Pre-Orders for my chapbook will close this Monday!

Info on "Unto the East: Words in Waiting"

Cover Design by Salina Marie Gomez, Denver, CO.
Introduction by Piper Beatty, New York, NY
Published by my newly created and totally made up publishing company, Patient Press -- Get it? It's double-entendre-tastic!

Dedicated to
Theresa, Tiffany, Amy, Piper, Jessica, Katey, Brandi, Stephanie, Andrea, all the other cystic gals, and also Ronnie.

Special Thanks To: Vicki Peters; Kathleen Rooney; Kelsey Hubbard; Rick Lupert and his PoetrySuperhighway.com; Teresa Bodwell, Unleash Your Voice and the members of Romance Unleashed.

35 Pages of Poetry and Prose!

New Site to Pre-Order!
You're not purchasing the book at this time, but it is the only way to guarantee I will order enough for you, yourself, to get a copy! Pre-Orders will be held for 14 days following the book's release in March!

ORDER TODAY!

Vote for me in the Old Navy Supermodelquinn Search!

Vote for me http://bit.ly/bMWJGB in the Old Navy SuperModelquinn Search!!

I need a lot of votes because I put my picture up late, so vote for me today- And tomorrow!

AND "Unto the East" now to include an introduction by Piper Beatty and cover art by Salina Marie Gomez! So exciting! Do NOT miss your opportunity to pre-order the chapbook! It's the only way to guarantee you'll get a copy of this limited edition print! Orders will be held for purchase when the book is released in March.

Click HERE. to order!

Love, CG bp

How Do You Organize Your Pills?

This from last night on CysticLife, in response to a question from a teen about how to get a handle on all those darned pills. It's all about organization, and plastic containers, baby.

<<

I have all of my pill meds in a big blue basket in a drawer in my bathroom. This drawer is only for medicine related things. In the basket, I put all the separate containers from CVS. THEN, I have this three-stackable pill container thingie that is clear, and can separate into three different layers. In one layer, I have only my enzymes. On the second level, in the morning, I take out each med, put in the number I need to take for the day into that second level, and then drop the bottle in the basket. So, all of my meds for the day are in that second level. Then, I physically take the morning meds in the morning, mid-days ones at lunch, and dinner, late-night, etc. The third level of the tier thingie, I put what I call "specialty meds" like ibuprofen, pepto bismol - extra vitamin K. Things I don't take every day but need to have on hand if an issue comes up. I take this thing everywhere!

Perhaps a picture would help me explain.

But anyhow, as the day goes, I empty that middle container. I am careful not to take pills that don't go well together, like iron pills and antibiotics. It is handy to have those pills right there connected to my enzymes so when I eat, I can take some other pills if I need to.

That's my system- and hey,this'll now be my blog for tomorrow!

www.cysticgal.blogspot.com

You Are My PCP: A stream of consciousness post

NEWSFLASH!
Remember those, longtime CG readers?
NEWSFLASH!

"Unto the East" now to include an introduction by Piper Beatty and cover art by Salina Marie Gomez! So exciting! Do NOT miss your opportunity to pre-order the chapbook! It's the only way to guarantee you'll get a copy of this limited edition print! Orders will be held for purchase when the book is released in March.

Click HERE. to order!

Onward . . .

About my appointment today, kinda, but really just a reflection on the idea of the PCP. This is a creative piece and not literally what happened today. But everything below has happened to me at some point in my life.

You are my PCP and despite your name you are not a drug I did in the 70s, you are my primary care physician. You must see me because you are my physician of record, and I must see you because my insurance requires it. We do not want to see each other again, we are adversaries. I regard you like an elementary school principal and I am a naughty seven year old. You regard me like a nuclear grenade and you are a soldier required to throw me, not able to decide which direction. I will walk into the room and you will cautiously shake my mother's hand, oh good, you brought your mother. You will wonder if I am a child or if I am an adult and you will remark that you are not quite sure how I was assigned to be your patient, you will smile and then ask me casually to review my "full medical history." I will stare back at you, where should I begin? I ask this literally, you think I mean figuratively, and I start to tell you how I was born in 1980. Why were you diagnosed?, you will ask me. Any surgeries?, you will ask me. You will ask me strange questions like how did I come to have this disease if neither of my parents did, if I ever worried about my cholesterol since I eat "so much fat," if I am bulimic or have a history of it. You will look at my fingers over and over again and you will hold onto my skinny wrist. I will wonder where you went to med school and how you ever finished and know that the answer is simple: barely. We will spend the better part of thirty minutes working over my history, I will watch you toggle frantically from the notes you are typing to the notes you have received about me over the year. I will remark that you must not have ever read them, and you will deny this is true. Of course I have read them, I am your physician of record. I have written all of your referrals. I am in charge of your care. Of course, I will reply. Of course you are. You are in charge of me. I will smile politely and after bringing you up to speed, after telling you about my 29 years of life, after noticing that you are about five years older than me, you will ask to listen to my chest and I will say, what for? I thought you didn't want to see me. Just kidding. And you will put your clammy little hands on my gorgeous chest under my thin cotton shirt as though it really makes it easier to hear, as though what you hear in my chest will change everything between us, and for that penance along with the drive and the talking and the two oxygen tanks I have wasted, I will walk out with a piece of paper from you that says I am allowed to live.

All About the Yuckies: for the cystic gals

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

Onward . . .

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

Tuesday, February 16, 2010

A Young Girl's Cry for Help

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

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

MY CG Response:

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

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

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

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

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

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

But you gotta do it. Every day.

Love, CG

So, what do you think?

Unblog Poest is up

Unbloggies, pls respond to UnBlog post! If you are a cystic gal and do not have an invitation, email me at cysticgal@blogspot.com and I'll invite'cha!

cg

Best Day EveRRRRR

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

Onward . . .

Today, my mom and I got up relatively early and got out of the house by 11:00! This is a harrowing (heroing? eh?) journey not often achieved by choice around here.

We went to the gym where she worked out and I did my weights routine and put some of the lazy gym-goers to shamitty shame. I think the gym should pay me to go the gym, do my work outs, and let people look at me and think, "Wow that's a good workout, and she's got the oxygen. I should really get going on this workout thing."

THEN, I ate a yummitty yum sandwich and berry smoooooothy, and checked the sales of my book while still at the fancy guest-pass-tastic gym. Discovery: I've already sold 108 books. So super.

THEN, I got a French manicure that put the self-applied ones I did in high school to a high degree of shame. This manicure only cost me $10! Awesome.

THEN, I came home and took a nap! A two-cat nap at that.

THEN, my mom and I went out for a yum yum yummy but affordable dinner! Steak and potatoes, man. Serious yum.

NOW, we're gonna get ready for bed early and watch the last bit of DAMAGES Season 1, while she drinks a "spritzah" and I drink hot apple cider. AND we'll have girl scout cookies.

THEN, we're going to bed early because we might go back to the aforementioned guest-pass-tastic fancy gym tomorrow!

3 month Guest Pass at Fancy Gym: $24- TOTAL!
Sandwich and Smoothy: $7
French Manicure: $10
Steak Din Din: not too expensive either.
Damages Rental: Netflix Trial Membership
Girl Scout Cookies: Still $3 a box.

Being a Recessionista: PRICELESS.

Be cheap. Live Large. The Economy Blows.

L'Chaim!

Goodnight!

One cystic gal's thoughts

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

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

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

What are you waiting for?

Friday, February 12, 2010

More Thoughts on Waiting

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

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

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

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

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

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

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

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

What are we waiting for?

Pre-Order My Chapbook, "Unto the East"

Fill out the form below to pre-order my chapbook. You have to arrow down to click "Submit"- Thanks!

Poet of the Week and Chapbook Release!

Major poetry news here! This week, I was named Poet of the Week by Rick Lupert's PoetrySuperhighway.com . You can go to there to read three of my poems that were selected: "Eleven: Evenings and Endings;" "Four: Dinner-Time Discussions;" and "Three: Afternoon Assessment." I was especially happy to be selected as Poet of the Week because I know for a fact that I tried three times to get on that site in college and alas, could not. I guess I learned something in the last 8 years :)

Second big announcement! I am releasing my first ever chapbook of poetry. I am self-publishing this book because I want to get it out to those who want it - fast, cheap and easy :) Or shall I say, inexpensively:


I'll be adding a link on the site for pre-ordering the book, and will let you know as soon as it is available for purchase!

I am very excited to share this book with all of you, and hope you will find it interesting! Thank you for all of your inspiration, support and also a lot of fun. More to come, as the waiting continues!

So much news!

Cystic Gal announces release of first poetry chapbook, "Unto the East." I am designing the layout now and hope to have it ready to print by March 1. Super! If you are interested in pre-ordering a book, let me know! More info to follow tomorrow, when I announce EVEN MORE NEWS!

(Not THE news, however. No new lungs yet. Just lots of writer-ie news.)

In other news, I'm not feeling so hot. I had a pretty rough week with shortness of breath, that S.O.B., and started some oral antibiotics on Friday. Thankfully, I am literally already feeling somewhat better. Can you believe that?

Friday, I celebrated Valentines Day with my two dear friends and my dear mother. Thanks to JSing^ for cooking a scrumptious meal and for inviting us to his lovely home, thanks to my CysticDad for a Pajamagram, and thanks to my Mom for a super day today! Oh yeah, and to Rita and Lucy^ for yummy eclairs at lunch!

Great Valentines Day so far!

Cystic Gal named a Top Health Blogger by Wellsphere!

CysticGal

Cystic Fibrosis Community

YAY

YAY! This actually happened awhile back but I did not follow up on it! I am glad to be joining the Wellsphere community, and thankful that they recognized my bloggy :)

CG

CG offers a piece of advice to comment writers:

If you mention "the devil" in an email to me, do not expect to receive a kind response. Love, CG

The Best of UnBlog: Edition 3

Here is the latest version of UnBlog, which also has suffered a lack of posting this past week or so. Ah well. Enjoy!

Friday, January 29, 2010

Transplant:

I am losing faith in my tx center. I have been on the list three months, which might not seem like a long time. But the last 2 times I have been sick, August and October, I was in a dire situation. In October, I had respiratory failure and my FEV1 is still 17%. This is me at my best, after pulmonary rehab. I am beginning to think that though supposedly I have a good status, I will have to get frighteningly sick again to get an even BETTER status, to get my lungs. I feel like, wishing I could edit out the drama in the statement, I often feel like I have lost my will to live through this whole thing. Or, at the very least, I am seeing that feeling slowly emerge from me, and though it horrifies me, it simultaneously frees me. My mind is a becoming a cesspool of firing synapses. I have so much to think about, a new passion for writing it out (not always here or on CG, but writing in general), yet I have an underlying feeling of like, why am I even doing this? I won't have the energy to follow this through, to get anybody to read it, to edit it later even. Why am I doing this, at all?

I want to get listed somewhere else but then I think, wouldn't I just be playing the numbers there instead of playing the numbers here and no matter what, the sickest gal gets the lungs, right? It doesn't REALLY matter how prepared your body is. Right now I am very much sick, and also very much in fighting form as much as I will ever be, and yet yet yet where are my lungs?

Then I worry about my attitude in a sort of Oprah's Secret kind of way (knowing, of course, that she did not invent that theory and similarly neither did the authors of The Secret itself). I wonder, if I woke up tomorrow with a better attitude would I get my lungs? Yet, I know that my first few weeks on the list I was indeed in a good spirit (mostly because of the excess CO2, steroid, and Valium, but nonetheless in great spirit). So if it was all about cosmic match of generosity to gratitude, I would have matched up then. In fact, it is more of a match of DNA strands, which I cannot control. But just in case, let me set the cosmic record straight: I would be amazingly grateful to receive lungs from a donor who is lovely and loving enough to give them to me. I have prepared my body and to the extent that I can, my soul. I have a bad attitude, but this attitude will indeed help me take care of my lungs, my body, and return to my life that, whether self-aggrandizing or not, I believe is worthwhile to other humans. I don't want to have to type, "Think of the children!" - but oh well, I already typed it.

So just to be clear, cosmos, I would be a grateful and trustworthy caretaker of a gift of life. Cranky and expressive, perhaps. But these are only two of the tools I have developed in taking care of myself, and the other self I hope to receive. And for the record, the cosmic record, I am only cranky about that which pertains to me personally in this struggle, and dearest cosmos, I think you would agree, that is fair.

Love, CG

Sunday, January 17, 2010

What I'm Learning About Relationships

I always figured (like most) that personal crisis (i.e. my illness, transplant, dying) would bring out the best in my relationships. I don't know why I thought this - if it's the way it's depicted in movies and books, if it's my Catholic upbringing and the secret belief that everyone is working from the same spiritual playbook (which of course we must not be), or what- but I must have been counting on this time in my life, more than I ever should have, to clean up the mess that is the personal relationships in my life.

As it turns out, my personal crisis of health is just bringing out the worst in my personal relationships.

Or should I say, it is polarizing my relationships. Some of the people that I feel most at ease with, that are the most appropriately supportive of me, and who I feel that I can truly count on, are my newer friends and people that outsiders (my family or older friends) would never assume I would count on. While others, I feel, are failing me.

I am lucky, blessed, thankful to have my mother. Other people do not have a mother like my mother- and even fewer get along with their mother in the way that I do. I adore my mother and we get along like peas and carrots. (My gramma always used to say that). I know my mother will be my caregiver and frankly, put up with me, in whatever way I present myself.

This post is meandering, but I like it. :) Love, CG

NOTES MAGOTES:

**Patient-Specific, Time-Varying Predictors of Post-ICU Informal Caregiver Burden: The Caregiver Outcomes After ICU Discharge Project Chest January 2010 137:88-94; published ahead of print September 17, 2009, doi:10.1378/chest.09-0795

Friday, January 15, 2010

No Number Romance Poem

[removed by CG, but included in my new chapbook!]

Where I'm At

I am here. There is no news. Alas, bloggies of the universe, there is no news.

Actually, there is a bit of news but I did not get my lungs, and so, no Real News.

I have officially decided to go forward with getting double listed. I will remain here, where I live, so that I can stay on this list here, but am looking into centers who accept double listings and create an arrangement for the patient to travel to receive the transplant. I have narrowed it down, I think, to about 2 clinics, leaning toward the one more than the other. I am being purposefully vague because in this wide world of weirdos, I don't prefer to get into doctor-naming or hospital-shopping through the blog. I just do that privately:)

In my poll of CG post preferences, you all voted that you prefer "random diary entry type of bullshit"- so here you go:

In other news, my Mom and I are doing well but running out of activities which amuse ourselves. Thank goodness we discovered the 1st season of Damages on DVD this week. We are all about this show.

I am starting to worry about money. I look down the road and I begin to worry, more and more, about the "when" of getting my lungs. When I first got on the list, rumor had it that I was in "a good spot on the list," and now that I've been on the list more than 3 months, I worry that this was not the case, or is not the case, any more. I have no way to know where I am on the list. If I somehow found out today that I was number 1 on the list, that could be different tomorrow. People are always coming and going from The List. I have to believe that my lungs will come at the best possible time. But, I worry that the time is NOW and that tick tock, they are not yet coming.

I wish I were back at work.

I miss the theatre.

I *think* it misses me. :)

UnBlog Post Is Up

Topic: Dear Cosmos, I am cranky and I am expressive, but I'm still and good tx candidate and here is why.

(Later to be edited for mass consumption).

Later playahs,

CG

Teens and CF, what'd'ya think?

I posted this on bloggy boyfriend Ronnie's site, and wonder what you all think about CF and raising a teenager. Here is my take on my teen years and CF:

I credit my parents for putting me in charge of my health care routine very early, by age 11 or 12, so that when the really bad adolescent stuff hit in high school, CF was not another power player in our teen issues. I was already doing my meds, calling in my prescriptions, having them delivered, cleaning my nebs, etc. I remember, at the time, that a lot of my friends and friends' parents thought it was crazy how much responsibility my parents gave me, but i know now that it was a great decision because it kept the CF responsibilities separate from the teen angst and car-key arguments, for example :0) My parents never used my health as a qualifier for other decisions (i.e. "you can't go out, I heard you coughing," and they never used my life as a comment on my health ("you must be sick because you stayed out late.") - these issues were separate in my house, and I think that was a good way to go.

The Office Work of Transplant

There is a lot of bill paying and budgeting and phone calling and copying and emailing involved in transplant. To get back in the swing of showing you what's up with CG, I am going to start to copy you on my office work. FUN! :)

This is an email between me and my CF doc about what I should do regarding double listing. I wonder, do any of you have thoughts about double listing and transplant?

<

Dear Dr. U-Bird:

I know you cannot disclose my status, and I don't want you to. But, now that I have hit the 90 day mark on the waiting list, I have been rediscovering the UNOS database and trying to get a handle on my wait time at the [Tx Center]. I believe that my LAS score is about 38, but it could be lower. It seems like at the [Tx Center], people are not getting transplanted until their LAS score is 40 or above, which makes me fear that I will have to survive another bought of sickness to be moved up on the list and receive lungs here in [this area]. Even so, it would be much easier on me personally and financially if I remained here to get the surgery and rehab.

However, I wonder if I should research getting listed somewhere else? Perhaps [this one place] or [that other]? I am not that interested in [the big important famous place] because of their policies about follow-up care and difficulty working with other centers when patients leave. Obviously I will need to do some fancy footwork both financially and personally if I will be leaving [here], and I want to start that process now if I must. On the other hand, I don't want to jeopardize my relationship with the [tx] team by telling them I'm looking elsewhere to be listed. I don't know what to do. Thoughts? Is there another center in particular that you do send patients to?

Thanks, feel free to call or email back. You know I love email. >>

The end of anonymous CG commentification

Sorry, folks. After long deliberation I have to end anonymous comments here on the CG. Still getting my share of weirdo comments and hoping they will go away by forcing email or other identifiers :) Then again, I might just get a bunch of weirdo comments signed "Weirdo@gmail.com" - but it's worth a shot.

No there is still no news. No news is no news.

And I am in a horrible mood and don't you all go emailing me about it. Sometimes a bad mood just strikes. I have noticed on my other bloggies' blogs, that bad moods seem to hit us cgs in a wave. Brandi is in a bad mood this week too that she blames on prednisone. I too am on on the 'sone, so maybe that is why I'm in the zone of bad moods. Who knows.

Oh me oh my, my poor mother is putting up with me.

No picnic, indeedilly-doo.

Love, CG

P.S. New survey to the right! Take it!

No News is . . . NO NEWS

I have not been writing 'cuz I ain't got no news and I have nothing to say- either!

I had a bad week because an old friend came in town and we had not-as-much-fun as I thought we would. I'm not saying I've been in a funk ever since, but . . .

that's all I got to say about that.

When are my new lungs coming!?

Love, CG

Pressure...dun a dun a, dun a dun a PRESHAHHHH!

I've been thinking a lot about the way that our bodies handle stress when we are physically challenged. I am obviously hanging on by a sort of thin thread here since I got out of the hospital in November. By the very nature of being active on the transplant list it means that you are in "end stage" disease. This still shocks me, when I read it on my chart (which I steal to read out of the door basket thingie of every room I am ever waiting in, in any hospital or doctor facility, ever). Ever time I read "end stage lung disease," or "respiratory failure" or any of the scarier phrases that have been attributed to my health in the last few months, I think, "Seriously?!" But anyway- so that is where I am in my body right now.

A body in that state is going to react to stress differently- and obviously I'm talking about my body. Ever since I got out of the ICU in the fall, I have been thinking about the way that we humans handle stress, and how we think of stress when we are in good physical shape. A year ago, if you had asked me about stress, I probably would have described it in mostly mental terms: the way I think about things that happen, the way I make decisions, the amount of sleep I had, the number of difficult mental things that come up in a day or week, how quickly or slowly my mind is cycling through thought. "Stress" has a negative connotation even if the stressors come from positive experiences, which is really unfair to us humans. For example, a bride on her wedding day, can be very happy and extremely stressed at the same time, due to what's going on in her mind. However, if she shows her stress, people will assume she is unhappy. Poor bride !

My point is - and I have more to write about this topic but want to just get the idea out there - that stress for me right now is not so much a mental "bad" state that I am participating in - it is just my body's natural reaction to any given stimulation around me. I find that my body (and to an extent, my mind), is not able to hand stressors like loud noises, striking visuals, or other every day things, in the way that it used to. It seems like my body is only able to meander through every day stressors and that other, more complicated stressors, are not really breaking through to my mind at all. I don't know. I'm not explaining this well - but my point is-

CFers, What are the major stressors in your life, and how has your reaction to them changed as your state of CF changes?

CG, where you at? What you do? Where you go?

Sometimes I'm too sleepy tired to write anything so I sit around reading other things. Tonight, I read THIS Euro article about hypercapnia (respiratory failure t2). I like to read medical journal articles about my medical problems so that a) I'll be more apt to understand why doctors choose certain courses of treatment b) so I can worry about myself in new, more vocabularicly correct detail. (That's right, vocabularicly.) I highly recommend reading as many articles from Chest Journal. Although, word to the wise-ass: I can't seem to figure out why most articles are free and then woops another one will be like, "Give me 12 dollars." I always say, "No," and google the article some other way. Whatevs. Maybe you have 12 dollars. I spend mine on cat treats.

Goodnight!
bp

The Best of UnBlog: Second Edition

This week's Best of UnBlog features some great narrative comments from other CGs!! If you're a CG and you haven't joined the ranting raving good time, send me an email and I'll invite you!
Love,
CG

An ICU story: it's okay to need help

Before I was in the ICU, and I mean until the very moment I woke up in the ICU, I persistently found it very upsetting when people would have to help me do things. Now, don't be confused, I was grateful to be helped. I needed help doing some things for the whole year prior to my ICU stay. I needed help doing these things: shoveling snow, moving groceries, doing laundry, moving items up stairs in building without an elevator, etc. When I woke up ICU, I need help doing these sorts of things: walking to the toilet; washing my hair; putting my shoes on; getting situated in my bed for sleep.

Actually- in the ICU, I learned from one of the doctors that in his opinion, getting situated in bed for sleep is one of the most athletic things that humans do all day. Think about it for a second. To prepare for sleep, you sit on your bed, lay down one way, shift your body different ways while supporting your full body weight in other ways. At some point, you are you lifting most of your body weight to roll over, position legs and feet, move closer to a pillow, reach to take your glasses off. It's a lot of work- it can take your breath away!

In ICU, I had several experiences that helped to snap me out of my persistent upset when being helped.

I had this nurse that was very, very pretty. She looked like a barbie doll from one of those Style Me Pretty Barbie heads where you could do the hair and makeup. She wore pink glittery eyeshadow, pink blush, and pink lipstick. Her hair was light blond and curly. She was in shape. And she was a total biiiiiitch. When her shift started, she spent the first 30 minutes of time in my room complaining about every single thing the previous nurse did. She walked around the room, moving random objects and explaining why "the idiots" before her were making "a complete friggin' mess" of the room. Oh, and did I mention she was about 25 years old? You know, she must have learned a lot in that three years of experience. I'm sure she was the top dog around there.

Anyhow, the night with her went as expected. She spent most of her time outside in her mini ICU cubicle, while the other ICU nurses seemed to have spent more time with me checking on things and offering to do physical therapy. I didn't really mind, because I needed the tiny bit of peace and quiet between the 7PM shift change and the 10PM sleeping time. And I was on BiPap a lot then, too. When she did come into my room, she completed the tasks of her job without much discussion, only expending her energy to question things out loud, "Why is this setting not WORKING!? [awkward bitchy smile]" or "Are you kidding me? 12 Liters?! WoOow. [awkward bitchy body surveillance]."

I did not like her one bit.

I liked it even less that she had to help me do things as listed above that are oddly intimate. "Can you find my underwear in the green bag? No, not those ones. No not those ones. Okay, those. Thanks." I hated it that she had to help find my pajamas and that she lingered oddly in the room as I changed. I hated it that she asked me if I needed to go to the bathroom before I went to sleep. And I hated it that she actually said to me, "I'm gonna tuck you in, so buzz me when you're really ready to go to sleep."

I know, it's nauuuseating.

When I was ready for bed, I did as I was told. I buzzed the nurse call button. The pretty nurse came in and turned down all of the lights in my room. She went to the back of the room and got out four big pillows from a closet. She took the old blankets and top sheet off of the bed. She asked me to sit up in the middle of the bed, and she put two of the pillows in an odd configuration behind me, and she told me to lay down. Still cautious but also very very tired (barely awake, really), I laid down. She put a large pillow on each side of me that I could lay each of my many-wired arms on, and then she laid first a fresh white sheet from my waist to the end of the bed, then a fresh warm blanket, and she folded a second warm white blanket at the end of my bed, in just the spot where it would add an extra cover for my feet below. Then she went to the side of the bed where my BiPap was and held it up- time for the mask. She helped me put my BiPap back on while I was still laying down, and as we were futzing with it, she said, "Earlier you said that worried you would fall out of this bed, since you have a queen at home, so the pillows should help with that. And the pillows this way behind your head should make the mask more comfortable so if you roll on your side or whatever it won't pinch your face or start leaking. Are you comfortable?" I nodded, I was falling asleep. I was about to sleep like a baby, all tucked in, and I was too tired to be all upset about.

As I was falling asleep, I distinctly remember thinking, "I love the pretty nurse. She's not mean at all."

:)

Jessica said...

It's always so awkward to have to interact with nurses on such a personal, intimate, one-way level like that; I don't mind (and even enjoy sometimes) the normal, non-medical chitchat that makes me feel normal, but having to actually ask for their help with such personal stuff...ahh.

I think we (I, ha) end up a little more defensive than normal just b/c I feel so damn vulnerable (NOT MY THING) and out of control (EVEN MORE NOT MY THING) when you have to have help for such basic stuff like that...so I end up kind of snappy and hateful feeling towards nurses and other staff that are usually just trying to help me. It's also really weird when you decided that one of them is an idiot, or mean, or both, and they turn out to be neither...but even scarier and more unsettling when you think that you've got a "good one" who's really on top of stuff and nice and all, and then they majorly botch something or get mean and snippy unexpectedly, etc. And esp. when you're a VIP like us, and you know you'll be back, it's a lot harder to figure out when it's worth the possible future repercussions to have them switch your nurse, and when you can suck it up til 7, haha.

Idk...I just really suck at being that dependent, I think partly b/c it terrifies me as much as it embarrasses me. It's one of my biggest fears about major ICU-ness later, b/c they're so much more strict about who can be with you when, and so far, I've really lucked out and had MDs willing to write orders to let somebody stay with me 24/7.

Sorry for the rambling blog-post of a comment. I really appreciate your honesty about all this type stuff, the non-clinical side of things that no one tells you about, because it always either a) validates that I'm not crazy or a bitch (or that if I am, it's not just me, tehehe), or b) gives me this, 'THANK YOU!' feeling for the insight into what's probably ahead that I either haven't considered in that way, or if I have, and voiced it, it's been all 'sunshined out' and glossed over and such, leaving me feeling paranoid - until AHA! CG said X DOES happen!

And I promise I'm not just being a kiss-ass. :o)

Just Because Everything's Different Doesn't Mean Things Have Changed

NOTE: The most heavily edited CGUnBlog to CG post evahhhh.

Being sick doesn't change a damn thing in your whole life other than in your own body and in your own mind. Being sick and even dying doesn't cure your problems, it doesn't bring back old lovers or make you love or hate them less, it doesn't take away the stresses of your job even if you don't go to your job, and in fact it does not even pay your phone bill for you. Being sick changes nothing.

[OTHER HEAVILY EDITED SAD/ANGRY BULLSHITTERY]

A CGUnBlogger said...

Thx for the invite. I went back and read your old posts and you often write almost exactly what I am feeling. We aren't exactly in the same place, CF-wise, I'm just a little above being listed. But since my family found my blog it's hard to share some things, especially when I know they are going to put a negative spin on it.

CFsteph said...

Well said. We continue to live while dealing with the rest of this crap. You are correct we are not dying! We are just in a different phase of our lives that most people will never experience.

Jessica said...

OMG. preach on, CG. I read this one after the one below it, and I swear it's like you're reading my mind all the way from Boston, and then writing it better here.

I'm obviously not in the same spot you are, progression-wise, but I'm one of the "wild-swingers"; there are some folks who just neatly creep, creep, creep down their slope of decline, nice and neat, in little chunks of percentages here and there (which, I in no way intend to minimize, it sucks and is cruel no matter how it happens). But I hang out in the low 60s for a while, then get sick and drop down in the low 40's (often within days), and then do IVs and (thankfully, for now) swing back up in the 60's...so I go from being "really good" to "really not" really quickly, and back again. And it seems like I'm swinging much faster than before, so I honest-to-God never really know what I can reasonably expect of my body on any given day (or sometimes hour). And every time, this same crap happens, as I've well documented on my blog. Point being, I'm in no way trying to be one of those awful story-toppers, just want you to know that despite my admittedly higher numbers, and that I can't relate to everything you (and others here) are dealing with, I swear I'm not the equivalent of the people saying, "Hey, I had a cold like that one time, so I totally get what you're dealing with".

I think the Holy Grail in chronic illness like this is finding the person (or if you're lucky, people) who truly understand that your illness is not *their* life event to script and manage and control, and that it "happens" to them only in as much as it "happens" to you; especially when you are the type of person-patient who understands that you are not ill in a vacuum, and care and consider how you and your actions affect others...but that you and your own health (physical and mental) sometimes have to trump politeness. I hope you have at least one to make the others a bit more bearable.

And I swear I'll just start emailing you instead of blogging in your comments section :o)

CG said...

Please please please continue to post this stuff in the comments section, esp. on UnBlog- since it's private readership! Then everyone can breathe a sigh of relief that we are feeling the same feelings!!

Stream of Consciousness Post and other sidenotes

Stream of Conscious: i.e. I'm too tired to write a formal post:

here I go go go keep going which is kind of how i live these days go go go keep breathing moment to moment can i get from here to there can i get to the bathroom can i get to the kitchen can i get through dinner i don't feel so good what is that pain in my ...oh good the pain is gone or is that the pain in my...i should take a nap and i think then the pain in my ...what, oh yeah, i did forget that medicine, thank you and ouch the pain in my chest. f. I think that was a little air bubble bursting. ouch. over now. funny that it hurts the most when it's still working and then POOF when it breaks it doesn't hurt anymore. it is cold here. i walked in the cold to my car and i thought my oxygen was on 3 continuous but it was really not on at all. the little nobby thing was stuck between 2L and 3L so I got no L and I was walk walk walking shuffling fast in the cold and feeling like this is not good this is not good this is not good what is that pain in my ... i think i'll just sit in my ... maybe when i warm up my . . . god there's that pain in my ... ow. ow ow OW. fuck. i've got to get going. i drove half way home before realizing there was no cold air blowing up my nose, pulling over to see my oxygen wasn't even on so that is the reason for the pain in my . . . ow. ow ow OW. i need my new lungs nOW.

***********************************************
notes:

ha. not so moving as some others, but gets the point across. goodnight- biPap for me. Incidentally, when I did get home from dinner, I had to go on BiPap pretty quick because I was exhausted. I must've been off of O2 for 10 or 15 minutes AND walking to my car, and waiting for it warm up, and driving half way home before I pulled over. I'm glad I pulled over. Just when my neurotic checking my o2 by pulling it out of my nose was wearing off! I feel better now but jeebers.

A CGUnBlogger said...

i know im not in as much pain as you. but i hate when youre breathing and then its exactly like you described... literally made me laugh out loud b/c its what I think in my head.

oh and I like the "best of unblog"... I wouldnt mind be quoted (if I ever said anything good enough for it haha), anoyn (I cant spell anoynomously) though, though no one knows me but i like the idea of the super secret unblog haha...

A CGUnBlogger said...

I play a game with myself sometimes when I don't feel good. It goes something like this: At 8:35 I'll take my shower. Then sit down. At 8:52 I'll brush my hair. Then sit down. At 9:01 I'll brush my teeth. Then sit down. And so on, and so on. Sometimes it is the only way I can get anything accomplished when I feel like shit.

And I've completely done the whole walk around and not realized my O2 was off before. Until I got back and checked my sats and they were in the 70's. You'd think I'd be more aware of my surroundings, but I swear to god, if something isn't stapled to my forehead there is a good chance I won't remember it. I blame it all on CF. LOL.

Jessica said...

nothing really to add here, except I still love your posts. And I love your description of the thought process w/ the pain. And I agree w/ [that other CGUnBlogger] on the little breaks while getting ready...but usually, when I feel awful, I put off getting ready until thelastpossiblesecond so it's not really an option. That way, in my crazy pink lady brain, when I look like crap (which I would whether it took 2 hours or 15 minutes, feeling that bad)I can blame it on "running out of time," instead of "Yeah, it took me hours, but I can't breathe and this is as good as it's going to get right now. Enjoy!" Isn't THAT rational?!
I do roll my desk chair over into my bathroom and sit while I do makeup, though. That helps. Can't sit while I do my hair, no idea why, but it never works right.

Also, unless I preface it with "sweet lord please never publish this thought anywhere but here", you can use my comments, anon or non-anon (reminds me of the Jeff Dunham Peanut skit, "Sah-Nah-TAH-ah-NAH").

YAY! Hope you enjoyed this edition!
Goodnight! CG

"You Should REALLY . . . "

My Mom and I were ranting and raving like a couple of comedic crazies the other day on the way home from PT. It dawned on us that we have had it UP TO HERE with having each medical person thinking that their prescribed medical miracle is the most important one to stick to among all of the others. In my brain it has become one big mish-mosh of:

"Wake up earlier - sleep in later - stay on the bipap - not too much time on the bipap - on the bipap as much as you can tolerate - are you exercising alone - safest to exercise at pt - you should use you treadmill at home everyday - no one can expect YOU to exercise everyday - are you cleaning your equiptment - you should clean it after every use - i mean daily - i mean weekly - well really just rinse it - boil it for an hour and let it air dry - but no matter what don't let it air dry - and take those nebulizers - eat a lot of food - airway clearance is important - well at your stage, not too important - four times a day is good - well whatever you can do - but are you doing it? Huh? ARE YOU?"

My mother and I also stumbled upon one of the most annoying phrases we are hearing lately:

"You Know What You Should Really Do . . .[insert brilliant realization as though its never been uttered before . . . ]!?"*
*These May Not Be Actual Quotes . . . or they may be.

These are the top ten things that medical people think we should really do to solve all of our problems:

Top Ten Things "You Should Really Do!!!"

1. Clean both of your nebulizers between each of 6 treatments per day in vinegar, I mean, soap, I mean boiling water, I mean just rinse them. You should really make sure to just rinse them. And make sure they're dry. But not air dry. But don't dry them with a paper towel. But they have to be dry. And the dishwasher could melt them, you know.

2. Stop drinking soda pop because it's just empty calories, but then again the sodium is good and you do need to stay hydrated so I guess its okay, well yeah, soda's okay. You should really keep drinking that.

3. Reorganize all of your cabinets and closets throughout your house. It might seem like a big project and it could also be a lot of physical work - but it could also be fun!

4. "Hang a terrycloth robe in the bathroom. That way, when you get out of the bath, you can just put that on to dry yourself off, and then wear it all day if you want!" (I've been sitting here, typing this in a damp cold robe in 20 degree New England weather because of this advice."

5. "Get out more. You have to have some fun, and live a little." (Um, No doy. Thanks for the advice and see you at 8 tonight to carry my oxygen tank.)

6. Never touch an elevator button. Just get in and wait for something magical to happen.

7. Wear masks as instructed through hospital, until a doctor sees you wearing one and says, "Oh, you don't have to wear that," and makes you feel like a bubonic fool.

8. You should make a shake out of ensure! Yum! You can just get out the blender and chop a banana and scoop some ice cream and throw in an ensure and blend that puppy up and drink it and then clean the blender really good because it'll be super sticky and frothy in a weird way because let's face it, ensure is just soy and vitamins and maybe vegetable oil. Yum! And sooo good for you. What's that about constipation and diarhea? Hmm...what could be causing that?

9. Install a better shower head. (And obvi none of these people have seen my shower!)

And... the #1 Thing "You Should Really Do!!!"

10. Add an extra butter pat to every single thing you ever eat. In fact, just sit around licking a butter stick. Yum!

*************************************
Phew! Now you know how to solve all your problems!!

Tomorrow: Best of the UnBlog! With Reader Comments!

Goodnight,
CG

Quickie: UnBlog Say What?

In my explanation of UnBlog, I told you the "Why" of UnBlog, and those invited were instructed on the "Where" of UnBlog, but I missed one important W.

What is UnBlog?

It is a blog just like this one, but it is not public, like this one. Anyone in the world (as seen below) can read this blog. They can also email it as a link to anyone else in the world, quote me from it, and I use my real name on it too.

The UnBlog is a private blog. In order to access it, members log in by clicking "UnBlog" to the right. As the author of the blog, I invite readers to it and they log in, or request the UnBlog come through on their Google Reader or Feed. They can also make unmoderated comments.

As I explained below, I created CGUnBlog so that I can write consistent, unfettered, daily CG posts without turning on my sizable MEPeditor (despite the fact that I misspelled 'dying' below). I have only invited two categories of people to read it: actual CF patients, and published authors. My reason for this is pretty simple- the CF patients won't hold it against me if I have an angry mean post, and they also won't take it super seriously. The authors, on the other hand, will be able to see my "best of UnBlog" entries and decide if they want to read more, and I can get the literary feedback that I want as an author. It's the best of both UnWorlds there on UnBlog.

Please don't be sad if you're not invited to read CGUnBlog. Most of you are not invited. If you are a CF patient, particularly a female CF patient, please email me and I'll invite you! If you were invited but haven't "joined" yet, let me know and I'll invite you again.

Others of you, keep on readin' the CG and be glad that I started CGUnBlog so that I can churn out more writing and edit down to the best for your reading pleasure.

Much love to ya,
Time for the bipap,
CG

In the Year 2000...In the Year 2,000 NINE

2009 CysticGal Facts and Figures:

11, 548 Unique Readers

5, 387 Returning Readers (I guess I scared away the other half?!)

179 Readers, top number of unique readers in a 24 hour period, just yesterday! YAY UnBlog!

71 Public Bloggy Followers

58 Readers per day on average

31 First-Time Readers per day on average

14 Subscribers

12 Countries with current Readers: USA and Puerto Rico, UK, Canada, Italy, Bulgaria, Philippines, Turkey (Thanks J!), India, Pakistan, Slovakia, Belgium and France (Hi, K!).

I am excited to also share that I have readers who are CF patients, parents, nurses, doctors, medical students, and friends of CF patients. It has been wonderful to write to different perspectives on the blog and I hope to continue it in 2010!!! Thanks so much for reading and participating too!

New Year, New Lungs,
CG

Update!

Ok, I just discovered two other UnBlogs on page 2 of my google search. I also discovered this sentence:

"Un Blog provides French language free blog hosting."- I clicked, "What does this site have against the French language?" I thought. But oh no! The site was written in French!

Syntax. It'll get you every time!

Un Blog provides free French language blog hosting.