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Showing posts from October, 2009

You Can't Touch This: Schkeev!

Attention many new readers, in case you haven't read the disclaimers, the below post contains bad language in the original spirit of the original CysticGal blog: ) Also, want to read some funny current thoughts by CG and often to CysticLady (my sister), read the tweets to the right! **************************** The thing I hate the most about being in the hospital is all the excessive touching. I don't mean the doctors listening to your lungs. I don't mean the blood draws. I don't even mean the surgeries. I mean the other types of touching that you are subjecting to and cannot get out of without literally batting someone away or being a total biotch . There is this one respiratory therapist that is actually quite good at his/her job. I'll call him/her Respie . Respie is jovial, friendly, and quiet when I don't want to talk, but happy to converse if I'm for it, while we PT. S/he works around my snarky approach to the hospital scheduling. S/he is one of the

Quickie post

I don't have the energy to post all the update but just wanted to say hello. Things are progressing every day. A little better and a little closer to transplant. Still in the hospital. Don't know if I want to go home or not. Don't know if they want me to go home or not. A little sick of hearing every one say, "Obviously we don't expect you to make much improvement, but [insert thing they want me to accomplish anyway, even though they just told me I won't be able to do it.]" But f that, I say. I walked for 10 minutes today and did not have a deep de-sat until I stopped walking. Down to 8L exercising, 4.5L resting. Did my will and my power of attorney and all sorts of my "bidness" with my parents over the past few days. Preparing for surgery. Making a music list to push on the surgeon because word on the street is, "He's into that." Still enjoying Florence Nightingale Syndrome , hoping to further develop it for Tx team. Still enjoying

Guest Blog by CysticLady: Update on CysticGal III

I just got off the phone with CysticGal.  She wanted me to post an update.  I will also try to explain what happened last week that led up to her stay in ICU.  We were all very worried, especially her, and at the time I wasn't sure what I should and shouldn't write based on my speculations of what was happening from nearly 1,000 miles away. I'm going to begin with a little history on myself, from the weeks prior to my lung transplant in 2003.  Three weeks prior to my transplant I went into respiratory failure .  Now, this can happen for a few reasons.  I had Type 2 respiratory failure which is characterized by both high carbon dioxide levels and low oxygen levels (and low pH, but I won't get into that).  This was hands down the scariest time of my life, not only because it was nearly impossible to breath, but also because I was told that at that point I was too sick to receive a lung transplant.  The most simple explanation I know of is, that during normal respirati

I Did Not Notice the Passers-by, And They Did Not Notice Me.

Dear CG Readers, I was having such difficulty deciding how to communicate with you again as everything unfolded over the past week and a half. I decided to make my Newsflash! to get the word out there, and then did not know what to say. (Not something I usually experience;) All I can say, so far, is this: When I got so sick two weeks ago, I spent some time mentally preparing. I thought I was prepared to come into the hospital, and to get better so that I could continue my journey to transplant. my transplant if I had to, to stay well. I never thought that things would get so much worse before my transplant. I thought my health would get a little better before the transplant. Now, my biggest hope is that my health stays just the same. I will look at every day of slight improvement or plateau as a victory. I am no longer demanding leaps and bounds, they could lead to setback. I am demanding one day at a time of same or a little bit more manageable . (More to come in later posts...) Ther

The 2nd Most Important NEWSFLASH!

First, release your worries, CGers! I am out of ICU as of last night. I have a long, or short, road a-ho, but I am out of ICU and glad to me after much initial trepidation. Second, contain your cheers, CGers! I am on the transplant list!! Yahoo! I cannot wait to tell you all about it in my next post.

Guest Blog by CysticLady: Update on CysticGal II

Tonight I got calls from CysticDad and CysticMommy saying that they are moving CysticGal to the ICU.  She's just not breathing very well.  She had some Solu-Medrol®  at 6:00 PM.  I hope that helps her a lot, it helped me a lot when I was in the same situation.  Hopefully she will do better with the kind of one-on-one care that you receive in the unit.  Initially I think we all had some panic, but I think we are all better now.  CysticMommy will spend the night with her tonight.  CysticDad already had a flight to Boston tomorrow. More updates tomorrow.  Thank you all for your support and prayers for our little CysticGal.

It's Me

Yo world, It's CG here, it's really me! I have had a long day and am waiting on the nurse to start my evening IV, so must stay up 30 more minutes. Blah. Today I thought of writing the blog in all sorts of ways: Cynical CG Blog: What did you do today, CG? Try to breath. Silly CG Blog: What did you do today, CG? Spend time with my mommy. Cranky CG Blog: What did you do today? Be annoyed at the P.A. who [omitted personal info that would make him/her feel bad]- and who is also generally blah. Medical Jargon CG: . . . DUDE! My totally on-the-verge-of-being-witty-n-hilarious blog just got interrupted by the Respiratory Therapist hooking up my BiPap who decided to entertain me with ALL, I repeat, ALL of the following voices: Johnny Cash Elvis Dracula Vampires in general? Count Chocula and would you believe it... Julie Andrews? While entertaining for a bit, this turned a 2 minute night-time errand into a 20 minute song and dance. This is just the sort of thing that a CG does not li

Guest Blog by CysticLady: Update on CysticGal

CysticGal went into the hospital on Monday.  Yesterday's ABG  showed very high pCO2, or carbon dioxide level.  They made arrangements for her to be on BiPAP  at least when sleeping. This morning, CysticGal had a heart catheterization , as part of her transplant workup.  I think she did well during the procedure.  Afterward you have to lay down still for eight hours or so in order to let the wound heal and reduce the risk of blood clots.  She was pretty sleepy all day and also wore the BiPAP.  We are hoping that the CO2 level comes down. We are very thankful for T^Money for going to the hospital and being there when CysticGal woke up.  She also kept her family up to date.  What a super friend!  When CysticGal first entered the hospital on Monday, we anticipated that she would be there a few days, get hydrated and get back out.  Now that the CO2 retention has reared his ugly head, we don't really know how long she will be locked up.  Please send warm and fuzzy thoughts th

Guest Blog by CysticLady: CF and Relationships Part II

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Let me thank you for the nice comments on my first guest blog on Cystic Gal.  I am also grateful to be able to have a forum to share these experiences. As such, I thought I'd write a follow-up.  There is another side to this story.  I will attempt to tell my version of it without using too many cliche's, but it may be hard because love is the most written and talked about topic in the history of the world. Love is a wonderful part of life.  I think I can go so far as to say, it is the reason for life.  It is indeed a real shame to go through such lengths as a lung transplant to continue living, to then deny yourself the chance for love.  The same way that I weighed the risks vs. rewards of a lung transplant, is the way that I have to weigh the risks vs. rewards of love. I have said before that I'd do everything again, the whole year of dying, the surgery, the recovery, for just one of those days after transplant that I didn't have to think about breathing.  Not

Guest Blog by CysticLady: CF and Relationships

I knew this day would come where I would post here, and I've had this idea percolating; however, I don't think that now, or any time in the near future will I know how to handle relationships and CF. A bit of history: I was married once.  We dated four years prior to our marriage and were married for six.  Around year four of the marriage was my lung transplant.  Before we were married I felt I had properly vetted the husband for many types of health issues.  He'd seen the gross hemoptysis, spent lots of nights in the hospital, changed a port needle, put the nebbies together.  Still, things fell apart in a complete and unsalvageable way in the two year period consisting of the year before transplant where I was dying all year, and the year after transplant where I was recovering all year.  I think all the time really, what was it all about?  It was no secret I was sick, it was no secret that I'd eventually need a lung transplant.  I know for sure that the transpla

Back In the Saddle Again

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

Statcounter! Good Work CG Community!

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5,448 Unique Visitors EVER, and 419 Readers this week! YAY! Awesome!! There have been some really great STATs lately but I haven't had time to post 'em. Below is the recent weekly total, and I will copy the search words just below it, to see how many Florence Nightingale searchers I am still confusing . . . (drum roll please, as I toggle over to see . . . ) 25% of CG readers are looking for info on Florence Nightingale Syndrome!! HAHAHAAHHAHA! Even WEIRDER, some one is just looking for "CLOWNS CYSTIC FIBROSIS." Ironically, someone is looking for "cystic lady blog", but little known fact: Cystic Lady is terrified of CLOWNS! And there she is, listed right below them. Coincidence? I think not! Enjoy! CG << 25.00% florence nightingale syndrome 6 25.00% cystic gal 3 12.50% cysticgal.blogspot.com 2 8.33% CLOWNS CYSTIC FIBROSIS < Page Loads Unique Visitors First Time Visitors Returning Visitors Total 11,313 5,448 2,975 2

The Placebo Effect or Mr. Miyagi: Good Enough for Me

Tonight I had some wonderful Reiki from a wonderful nurse I know and adore. I am also now sleepy and relaxed and rested. And so is my kittttty. I will write about this better tomorrow, this crystal wearing hippy is sleepy. Peace in, fear out. Wax on, wax off. Daniel-san, Cystic-gal. :) Goodnight, CG

In Defense of Alone Time

So right now I'm gettin so busy during day with the exercisin and the medicatin and the nappin and the eatin and the paper workin and the plannin and the bill payin and the phone callin and the emailin and the cats . . . that I am not the bloggy that I used to be. But I do have some good blog post titles building up in my and so here one is right here: In Defense of Alone Time . I am alone and awakey-wakey-no-mistakey . . . probably right now . . . about 10 hours of the 24 in a day. Thus, an equation: 24 hours in a day -9 hours sleepin at nighto -3 hours at a doc appointment (travel incl) -2 hours of visitor palsy walsies --- 10 hours of Cystic Gal Activity Of this I spend time doing all that stuff up there, described as: "the exercisin and the medicatin and the nappin and the eatin and the paper workin and the plannin and the bill payin and the phone callin and the emailin and the cats . . ." Thus, a second, funnier equation: 10 hours awakey in a day -1.5 hours exercisi

Namaste: just the news

I am so very tired tonight so I will not write a long post. But I wanted to share some news. It looks like most of my transplant eval will be done 10/21. Woah holy poo that's soon. I did some wicked good yoga and though I don't have the energy to write a long ass post about how good it is for me, I wanted to tell you that I have been doing yoga since the age of 16, and though I cannot say that I did it every single day since then, I can say that I practice yoga movements and breathing techniques in my artistic theatre work, and it's safe to say that yoga has definitely been part of me staying well for the past 5-6 years with severe lung disease. Tonight, I was able to turn my oxygen down 1.5 liters from where it was prior to my yoga session. Also- it's good for the mind. I have this idea to write a book called "Get Welliquette." I also want to write two other books. I also want to go to bed. Love, CG

To Pique Your Interest, Cystic Lady Quoted Below

I decided to share with you one of my sister's blog posts about "Project Cruise Hotness," so that you can be prepared for her also-quirky writings. This is the final posting in a long series of writings that we both did related to Hotness, and the pursuit thereof, for our international travels: Wednesday, April 1, 2009 What We Learned On Our Cruise Part II 1) I do look like trouble, and Beth looks like an angel. Also, little old ladies can be mean to me, and they don't like my cowboy hat. Men do like my cowboy hat. I think the little old ladies are jealous. 2) Only Beth gets compliments like "Princess", "Lovely Lady", etc. Then they say something to her like, "oh looks like you brought trouble back for dinner" (referring to me). I have not yet decided what to make of this, but I can tell you it has been going on our whole lives. 3) I already had a theory that two breakfasts were needed to sustain my troublesome activities. The cru

More on Dragons

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I am up late and it's a whole new post date now. A few weeks ago Mary from "Peter, Paul and Mary" died. This leaves me thinking about dragons again and how I was on this whole mission to figure out why CFers are not dragon slayers, but dragons themselves. If this seems out of context, new readers, this was a topic earlier in the CG blog world. Perhaps I will get another dragon poem out of it. Dragons are noble and courageous and brave. Dragons have a mighty roar and a fierce fire inside Dragons are strong strong stronger than the will of any mortal man "Dragons live forever, and not so little boys." Dragons feel deeply, live boldly, and live their very public adventures in a very isolated way. There are not big packs of dragons. Yet every time a dragon flies through the sky, there it is, a dragon. A dragon to look at and admire but only one or two befriend. Tonight I am thinking a lot about how to begin to summon my inner dragon with more ferociousness. I will n

Introducing Guest Blogger Cystic Lady!

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"PS - i adore the 20 second videos of you and [Cystic Lady] i've never met the girl, but i can tell she rules." -Actual comment on facebook today. Cystic Lady, March 2009, in pursuit of Cruise Hotness. I have added a guest blogger who you already e-know and e-love, Cystic Lady ! Cystic Lady hails from the original Cystic Family of Cystic Gal, Cystic Mommy, Cystic Dad of recent CG commentary and Cystic Sibling who goes mostly anonymous on blog thus far. (He is mysteriousemente , that Cystic Sibling I love!). [If you struggled to pronounce mysteriousemente , try it again in a Spanish accent). Cystic Lady and Cystic Gal teamed up earlier this year to write the much-acclaimed and forwarded Facebook Notes, "Project Cruise Hotness," of which we have not yet written the final chapter. Perhaps we will publish "Project Post Transplant Hotness" in 2010. Oh to be a Cystic^ Sister! Cystic Lady is in her thirties, w/CF, CFRD , and approximately 6 years post-tra

Looking for "poems about boobs."

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This Week's Hilarious Statcounter Update! The top search term used to locate CG this week - ON TWO DIFFERENT DAYS: "poems about boobs." See evidence below. Also, apparently I am still confusing googlers worldwide who are seeking information on Florence Nightingale. Tee hee. Date Time Name Query Landing Page Oct 6 05:16:31 PM www.google.com poems about boobs 2009/08/poem-from-hospital.html Oct 6 09:42:16 AM www.google.be "my underwear drawer" 2009/09/my-underwear-drawer-fair-representation.html Oct 6 09:16:21 AM www.google.com cystic gal blogspot http://cysticgal.blogspot.com/ Oct 6 09:11:18 AM www.google.com cystic gal blogspot http://cysticgal.blogspot.com/ Oct 6 09:09:06 AM www.google.com cysticgal http://cysticgal.blogspot.com/ Oct 5 11:10:43 PM www.google.ca florence nightingale syndrome 2009/07/florence-nightingale-syndrome-what-can.html Oct 5 09:59:21 PM www.google.com A good day, aint got no rain. A bad day is when I sit in bed and think of things t

A slice of life with CG and CL (CysticLady)

It's a-Happenin'!

Today was my initial transplant evaluation meeting and we got the ball rollin'! CysticLady was here for me, and we talked all about my big careteam of CysticMommy, T-Money, and others! We are exhausted and must go to bed. My cats are awesome. Love, CG

Metaphor du Jour.

Living with CF is like trying to ride your bike home before a thunderstorm. The rest of the metaphor's explanation is cheesy. So I'm gonna leave it at that. I have a big doc appt tomorrow and CysticLady is coming to visit too, and I still have to do my 2nd Tobi and then go nn. So, g'night. Read Ronnie's blog tonight and answer a CF Gramma question. (You can find his blog on my right hand column, "RunSickBoyRun." gn, CG