Friday, January 29, 2010

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,

Tuesday, January 26, 2010

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.

Monday, January 25, 2010

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. >>

Sunday, January 24, 2010

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 "" - 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

Saturday, January 16, 2010

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?

Wednesday, January 13, 2010

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.


Sunday, January 10, 2010

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!

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."


BloggerJessica 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 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.


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' 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.


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

Saturday, January 9, 2010

"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!


Thursday, January 7, 2010

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,

Monday, January 4, 2010

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,


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.

The Best of UnBlog: First Edition

Cystic Gal (CG) UnBlog: CGUnBlog

I will be using UnBlog to write more veraciously everyday, so that I can worry about editing later without clogging up the CG blog. Read other reasons below in . . .

THE BEST OF UnBLOG: First Edition, where I show a melding of the discussions (me, discussing with me . . .) that came up on UnBlog recently.

Why UnBlog?

One reason is that I have a lot of younger readers of the CG, both my irl students (post high school) and young CFers. I started to feel like there are some things I don't want to say on the CG if I know my youngies are gonna read them. For example, the holidays STRESSED MY SHIT OUT and I could not write about it a single bit because it would've offended the shiiiit out of every human I know. Though most humans I know were stressed out at the holidays too. It is just no fun to be waiting on lungs and singing the Christmas carols. I'll tell you where to put the yule log. hee hee.

That post coming soon, perhaps tomorrow.

The other reason for the unblog is that I want some things to remain private from my coworkers and family, and to just exist as writing projects without muddying the CG blog which is taking on more of a proactive approach to the CF bloggy community. I've started to get creepy comments on my blog from people that the famous CF Husband (not mine) would call "the trolls," who are either CF parents that don't want to read negative things AT ALL (and apparently someone is tying them down and forcing them to read my blog), or religious extremists who don't enjoy any of my spiritual discussions, or whatever, so I want to be able to put stuff up without hearing from "the trolls," while still leaving CG open to comments and etc.

I also really want to commit to posting every day if I possibly can, on either CG or CGUnBlog, so that I can hold on the memories of my upcoming transplant. I am really sad that I don't have daily posts from the three weeks I was approaching, in, and recovering from respiratory failure. I mean, of course the week in ICU I could not have written the posts, but I could have done it the week prior or the week after, and then I would have had a clearer memory now of the way my mind was working THEN.

The Gives and Gets of Pre-Transplant

My friend T-Money^ sent me a quote that I used on facebook that says something like, "Don't think of organ donation as giving up part of your self to keep a total stranger alive, think of it as a total stranger giving up almost all of them self to keep a part of you alive."

This got me thinking about what I am giving up, what all recipients give up in the pre-transplant process that could come just before the dying process, and for many of us, leads to death.

I have been thinking, also, about what transplant recipients have to gain- and what many do. From the seemingly small ability to hold one's breath for a long time, to returning to sports that many abandon in childhood or adolescence, to having the time and energy to reach new heights in our careers, hobbies, friendships, and romances.

Because you know I love a tragedy, I want to first talk about what I believe I have given up since that moment when Dr. U-Bird^ said, "Why don't we make the call right now? Get your process started now?" knowing that if I left clinic and thought about it for another month it could mean a big difference in my care. That moment was just in August - only 4 months ago, and here I am, 2 1/2 months on The List.

What have I given up so far?

My job. I can't go so far as to say that I have given up my career but I most certainly have given up my job for a time. I miss my work dearly. I never realized how much of my personality is balanced by my work, how much my psychology is based around a sense of accomplishment (which now I can't seem to muster), how much my mind depends on busy-ness. I am asking myself these questions today:

What do I do when I have nothing to do?
What do I wear when I have nothing to dress "for"?
What do I think about when I have nothing to think about?
What do I talk about when there is no personal news to discuss?

I think that I always romanticized the past parts of my life that were dedicated to my illness. Times in the past where I was so sick that I couldn't go out of the house, I was always well enough to be reading something, or writing something. Also, at those times I was always in grad school, college or high school. I was always able to fill my time and expend my energy with intellectual goings on. At this time of my life, as I prepare for transplant, all of my energies must be directed on taking care of my Self, and the amount of energy I have to give to anything else is very little. I have had trouble even keeping up with my blog, emails and personal correspondence.

In the back of my mind, I thought I would be able to spend this time writing a great play or novel, reading all the books I never had time to read before, or watching all the movies that I should have seen. I even had visions of meditating for hours a day or reading the Bible front to back. I was overly attached to this romantic ideal of my spiritual/intellectual expansion while my physical abilities are limited. Now, part of me is greatly disappointed that "this" is all there is to do (sleeping, eating, medicines, pt, cpt, hot bath, repeat), and that "this" is really quite enough, sometimes too much, for a day.

So what have I given up? My job, my career (temporarily), but also the parts of my self-esteem that are attached to my intellect or academic pursuits. With that, of course, I will gain some understanding of other aspects of my Self- I am however, not on to that enlightenment yet.

What have I give up for transplant?
The way I look. I am very unhappy with how I look right now, and even less happy with the idea that I will have less control over how I look - for the rest of my life. After transplant, I might get a puffy face from steroids. Or my hair might change color or texture. Or I might gain or lose weight. And I will have scars all over my chest.

This is not all that bad, I know. There are many who have lost more of their body than I have or will to other diseases or afflictions. Yet, anytime a person looks in the mirror and thinks, "who is that?"-it's not a good moment.

I am getting to know a more stripped-down version of myself. I know that this time has broken my addiction to being pretty all the time. I have gone through periods of time like this in the past. My freshmen and sophomore years of college were pretty "anti pretty." But this is the furthest I have ever gone in to the realm of not conforming to my pretty-potential. I can't say that I enjoy it. I wish I had never cut my hair. True confession: I hate my port. My skin is all pasty white and no more tanning for me :( and my hair is like 5 shades darker since I cut it and the IVs ruined it this summer/fall, and the Lupron darkens it too. That's right folks, I do not feel pretty and I am not happy about it.

At the same time, it provides a little relief to know that this is obviously not the stage of life where I'm gonna "catch myself a man" anyway, so what is the point, really, right? I don't know. I worry that I will not find love even after my transplant. I worry that my near misses so far are all that are in the cards for me. Which is more than some people have all their life, so I should not complain. I am glad to have learned that I don't care if I never find romantic love again, I have a lot of other types of love to live for.

What have I given up so far?
(some of) My friendships. When I got so sick this summer, I was suddenly hit with a wave of could be social anxiety, could be survival instinct, or could just be cattiness. With a large rush, I just wanted to cut the cord on many of my friendships prior to the transplant. I may pursue these friendships when I am well again, but for a myriad of reasons, there were a list of people that I just did NOT want around me during my time of great illness and healing.

It is unfortunate that people with CF or any other chronic illness have a lens through which they see all friendships. Will this person be with me through my sickness? If not, do I want to be friends with them anyway, and why? Sometimes, the answer is yes. Some friends are just good for fun, or a laugh, or some shared hobby or history together - though you know they are undependable you choose to accept them. In a time of health crisis or healing, however, there is no time for these cursory friends. No energy. No desire.

In my case, when I was sick this fall, my blood pressure and oxygen levels were so sensitive, that my blood pressure would spike when the phone rang. My oxygen would dip low when certain people came in the room just based on the change in my breathing. When I was trying to ween down from 12L of oxygen, I had to turn off my phone completely and ask the nurse to limit visitors to my room because it was driving my blood pressure up and my oxygen SAT down.

we just need to push aside SOME friends in these dire circumstances.

There are three friendships in particular that I have lost or curtailed in the past year. There are three specific reasons for this. One friendship ended because the person was not there for me - for three months. Though the person had been supportive of me in the past, as my health went downhill, she completely ignored me. I was in the hospital and adjusting to using oxygen at home and "out and about," dealing with a large shift in my lifestyle.

When she and I tried to patch things up, I went along for a few more months until I realized that I truly could not forgive her for abandoning me when I needed her, and even if I could forgive her (I have since,) I would never trust here again. While she expected me to be there for her every time she had a crisis, she had proven to be that she would not be there for me. How can a friendship keep building?

The second friendship, I hope to resume after my transplant. Over the past year of our friendship, I realized that my illness was becoming so central to our friendship - central to the person's interest or loyalty to me. In several situations, she would bring up CF around people I didn't know very well, and it would become the centerpiece of discussion, i.e. my life history would become the party game or "hot topic." Though unintentional, I think this friend was in some ways attached to my identity only through my illness, and not through a desire to know the whole me. As I began to realize this, every encounter with her became like being run over by a Mack truck. She would hound me about my health, and tell me, "THAT SUCKS! That's horrible!" about any little detail- even things that are just every day life with CF. I started to realize that the friend was more "caught up" in the idea that my life was bad (which it ain't!) and that she could "help" me (which she couldn't!), than on any real connection. When I got so suddenly ill in August, I just had to cut her loose. I did not have the emotional or physical energy to deal with her then, and I think the drama of dealing with her now would be just as bad for me (perhaps give me a setback I do not need). It is less than ideal, but I don't plan on having any contact with her 'til after my transplant, if then.

More laters....

Sunday, January 3, 2010

My Tx Song List!

It's complete! My song list for Dr. CJet ^ to use during my tx surgery! I'm pretty decided on it, but whaddya think?!!


What A Good Boy Barenaked Ladies
When I Fall Barenaked Ladies
Wrap Your Arms around Me Barenaked Ladies
You Will Be Waiting Barenaked Ladies
And So It Goes Billy Joel
I Gotta Feeling Black Eyed Peas
twenty one Corey Smith
Tennessee Line Daughtry
#41 Dave Matthews Band
Stay (Wasting Time) Dave Matthews Band
I'll Back You Up Dave Matthews Band
Slow Motion David Gray
Soul Meets Body Death Cab For Cutie
Not Ready to Make Nice Dixie Chicks
Swimming to the Other Side Emma's Revolution
Rhiannon Fleetwood Mac
No Woman, No Cry (L.P. Version) Fugees
Falling Slowly Glen Hansard & Marketa Irglova
If You Want Me Glen Hansard & Marketa Irglova
When Your Mind's Made Up Glen Hansard & Marketa Irglova
21 Guns Green Day
For Good Idina Menzel & Kristen Chenoweth
Hide and Seek Imogen Heap
I'm Yours Jason Mraz
Hallelujah Jeff Buckley
Say John Mayer
Read My Mind The Killers
Paparazzi Lady GaGa
Obsessed Mariah Carey
How Far We've Come (Radio Version) Matchbox Twenty
Last Beautiful Girl Matchbox Twenty
Bright Lights Matchbox Twenty
Go Places The New Pornographers
Young Folks Peter Bjorn & John Feat. Victoria Bergsman
Hey There Delilah Plain White T's
It Could Be Sweet Portishead
Idioteque Radiohead
Ever the Same Rob Thomas
Two Ryan Adams
Mary Sarah McLachlan
Song for a Winter's Night Sarah McLachlan
American Tune Simon & Garfunkel
Make This Go On Forever Snow Patrol
Set The Fire To The Third Bar Snow Patrol Feat. Martha Wainwright
Act II: No One Is Alone Stephen Sondheim
Already Gone Sugarland
Baby Girl (2nd Version) [Remix] Sugarland
Breakdown Tom Petty & The Heartbreakers
Southern Accents Tom Petty & The Heartbreakers
Stories We Can Tell Tom Petty & The Heartbreakers
Moment of Surrender U2
Moondance Van Morrison
Tupelo Honey (2007 Remastered) Van Morrison
Brown Eyed Girl (Single Version) Van Morrison
It's a New Day
Fast Car (feat. Paul Simon) Wyclef Jean

Saturday, January 2, 2010


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Thanks again!

Friday, January 1, 2010

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Healing Statements for Surgery

I am using a book, Prepare for Surgery, Heal Faster, by P. Huddleston, to get ready for transplant. The book was recommended by my surgeons and it teaches about mind/body techniques that are particular to major surgery. One of the things taught in the book is to prepare Healing Statements for the surgeon, anesthesiologist and nurses to use prior to, during and after the surgery. The use of Healing Statements has been studied and found to ease the surgical procedure and healing times in patients. You might have read in my prior post that Dr. CJet^ plans to use my Healing Statements, and remarked that "people do indeed" use them - because of course I was skeptical.

Here we go!
Dear Doctors and Nurses,

In preparation for my lung transplant surgery, I have prepare the following Healing Statements. Please read them to me at the times indicated. Please read the statements more than once (up to five times!), and repeat them in particular if you are interrupted or if anything remarkable happens in the room while you are reading the statements.

Thank you so much, I hope that these statements will provide me with relaxation and comfort during and after the procedure.

-Cystic Gal

Prior to Surgery / As I am going "under"
You will relax completely. You will feel comfortable before, during and after surgery. Your surgery will go well and you will heal quickly afterward. You will accept your new lungs.

After Surgery:
Your operation has gone well! You are accepting your new lungs! You will heal promptly and feel comfortable. You will rest and awaken when you are ready.

You are accepting your new lungs. You are comfortable now, and you will awaken as if you had been asleep overnight, feeling rested. You will feel well and you will remain calm. You will heal promptly and well.

Thank you so much! Please feel free to say other positive, healing and peaceful statements to me. My parents will have an IPOD and small speaker for my ICU stay, and I ask that they be allowed to plug it in for me while I am waking up from the surgery. Thank you!

-Cystic Gal

SO? What do you guys think? Any recommendations?