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Showing posts from September, 2009

Tell You What It Means To Me

Respect. This must be the central focus in discussions of faith. Respect for differences. Respect for history. Respect for emotions. A few days ago I received a correspondence about faith that put me in a tailspin. I don't want to discuss it too much here because of some privacy issues, but I was all a-mess over this. I was angry, then I was sad, then I felt bad for the other person, then I was just confused. Then I talked to my friend Lucy^. She pointed out that basically, I was feeling disrespected. As a Catholic. As a new-age-crystal-wearing- hippy -type. As a descendant of Native Americans. As a woman. As an adult. As a politically liberal American. Etc. And yes, I realize that some of those labels don't seem to belong on the same name tag. So be it. I realized, that this is the line I was trying to articulate in my earlier post, An Open Letter To God , where I discussed my negative feelings toward some expressions of faith. These are the expressions of faith that upset me,

You Owe Me Money!

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It's the final night of the "Unleash Your Story" campaign for the Cystic Fibrosis Foundation. I have had a good run here! At the offset, I hoped to raise $1000 for CF. I am a bit shy of that goal. I asked my avid readers to donate $2 for every quality post that I wrote put up in September. By my calculations.... If you are reading this...you owe me... 16 quality posts times 2 dollars per post = 32 DOLLARS! I only need 5 people to donate $32 to make my goal! Too steep? I only need 8 people to donate $20 to make my goal! Still too much? I only need 15 people to donate $10 to make my goal! Feelin' super broke? 5 DOLLARS. You can give up a latte or a beer in the name of my CFF campaign. If 29 random CG readers donate $5 by clicking HERE , or by pledging to me and then mailing a check to the CFF, I will make my goal!! I have to make my goal, people!!! Have I mentioned I'm getting ready for transplant!? You have to keep my hope alive, people! Don't let a sic

Randomling (A Poetry Post)

Skinny Silver Time [This poest has been deleted because it is included in my chapbook, "Into the East."]

The People Want What They Want: Lighten Up Already!

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When you're feeling blue. Down in the dumps. Cranky Face Magoo. There is only one thing to do: DANCE! And if the first time doesn't work . . . DANCE AGAIN! NOTE: The second take is easily 1.5 million times funnier / more embarrassing than the first for at least 5 reasons. Read tomorrow to find out what the 5 reasons are! Tomorrow, I promise to follow up on all posts of recent! For tonight, Just dance, Love, CG

An Open Letter To God

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Dear God, How are you? I am fine. Just kidding. I decided to write to you tonight instead of talk to you so that I can pin down a few issues that I am dealing with this week, and particularly today. So, on with the normal order of things: First, Thank you for all of the talks and visits with my friends and family today. Thank you for my party last night. Thank your for my creative thinking today and for the tons of mental energy I had even though I felt physically tired today. Thank you for the phone. Thank you for my cats. Thank you for providing me the means to create financial stability for myself at this trying time. Thank you for so many other things I can't think to type right now. Thank you for my blog and for all the people that read it and find it at all thought-provoking, comforting, funny, or clarifying even if they disagree. Thanks for my fast typing speed. And on and on. Second, I am sorry that I had some negative thoughts and feelings today toward myself and others. I

Best Resource Yet!

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I am going to start recommending patient resources on CysticGal. The first one is below: The single best resource I have come upon so far is the book Sick Girl Speaks ! by Tiffany Christensen. This is a book written by a fabulous cystic gal who had two double-lung transplant surgeries -that's right, two different transplants of two different lungs at a time. 6 lungs in her body over the course of her life. I recommend this book to anyone who wants to learn about chronic illness as it is experienced from a patient perspective. I recommend it to my own friends and family who are trying to understand what I am going through right now. Tiffany and I happen to share a lot of the same views (not all, but a lot), and I find myself in the pages of this book over and over again. You can find more info on the book at Tiffany's website, http://www.sickgirlspeaks.com/ .

If I Were a Blogger, I'd Blog In the Mor-or-ning, I'd Blog In the Eeeeeev-ening, All Over This Blo-og

AFTER NOTE: This is a pretty random post dealing with both large and small issues. I decided to go ahead and post it in its as-written form so that I get it out there by the deadline of midnight. I may choose to edit it after... Love, CG Tonight will certainly be a stream of consciousness post because tonight I am laying lieing lying on my couch with my feet literally up put your feet up style and the computer is on my lap the thing i do enjoy about writing s-o-c on the computer and not by hand is that i seem to be more decisive about line breaks like that one there no that one okay today was a good day except that i was fucking tired all day had a headache and a sore chest and also sometimes my head hurt but my oxygen was better than yesterday cuz i checked it every hour on the hour even once in the middle of a nap which means i must'nt've been asleep for reals. i love my cats and it was a big moment for me when i realized well of course i should get a transplant if i don'

Stream of Consciouness (Weekly Break From Overly Cerebral Posts...)

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Quick updates. Today was certainly not as good of a day as yesterday. I was diggity dog tired most of the day. I slept a little later than I meant to (til 9), and ate a good breakfast, was sluggish through my morning meds and routine, and still felt poodidddly doo most of the day. Very very tired. Though I checked my O2 and heartrate and bp this morning, I was tooling around the house feeling very tired, and very clammy (many many hot flashes from the lupron at this particular week.) Around 2PM, yes, 2PM, I checked my oxygen, and though I was wearing 1.5L, my O2 was 83! Well no kidding I felt like poo. I was poo! So, I turned up the juice. Having low oxygen creep up on you is such a menace. Like having bad blood sugar - you feel like crap just enough to know that you feel like crap, but that crappy feeling keeps you from having logical thoughts like "maybe I oughtta check my sugar," or "maybe my 02 is low?" Instead you lay around for a few hours wondering, v

Hilarious CG Development on Statcounter

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9% of CysticGal readers today found my site by googling "there once was a gal poems." Someone else, was looking for "I'm ok you're ok"- perhaps my site was useful (??). Yet, someone else was looking for Florence Nightingale but entered "florence night gal." I am sure my post helped this person. :) Tonight's real post is below! Please read IT. Goodnight, CG Perc. Search Term 36.36% cysticgal.blogspot.com 18.18% cystic gal 9.09% the once was a gal poems 9.09% CFers wearing oxygen 9.09% cysticgal 9.09% "I'm ok you're ok" blogspot 9.09% florence night gal 100.00%

Why I Write the Blog the Way I Write the Blog

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STATCOUNTER REPORT THIS WEEK: Mon Tues Wed Thur Fri Sat Sun Total Avg Pageloads 51 72 72 111 30 47 44 427 61 Unique Visitors 40 40 46 70 27 38 30 291 42 First Time Visitors 18 15 22 46 8 22 15 146 21 Returning Visitors 22 25 24 24 19 16 15 145 21 YAY READERSHIP! So many new of you this week! AND- Congrats to the "Unleash Your Story" Team Cystic Gal! We were the NUMBER ONE EARNING TEAM THIS WEEK! If you haven't donated to "Unleash Your Story" to help fight Cystic Fibrosis, you can do so by clicking HERE . Every dollar counts, so consider donating today! Okay, today was a big day. I got a wonderful email that helped clarify my truest motivation in writing this daily blog and letting whatever comes out, come out: << Hey there, [...] Anyway, word on the bloggy street is that you're starting the transplant process? I'd love to chat with you about it, although I'm sure as the sister of a post-transplant CFer you could probably fill up multiple

Follow ups, Discoveries, and Epiphanies, OH MY

What's best for- ME? ITEM THE FIRST: In response to yesterday's post about Beauty , I discovered via email, tweet and other new- fangled electronic means that there is a big hilarious discussion among CF women about the topic of makeup and seeing the doctor. Apparently, the manipulative altering of the female appearance does not stop at the hospital door. I hope to post a poll about this on my blog tonight following tonight's post. ITEM THE FIRST POINT FIVE: Boston readers, email me please. CysticGal@gmail.com ITEM THE SECOND: I was on the phone with my dad tonight and he shared with me that he is struggling to "catch up" with all this latest news of my health. I realized he is the same position that many of my family members and friends may be in. This news of transplant, it seems, has surprised him by coming much earlier than he thought. In this conversation, we talked about the changing "face" of CF. Growing up in the 80's, the image of a chi

Ten Beauty Secrets of Cystic Gal

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Tonight in an attempt to keep it light here on CG, I will answer a question that I literally get all of the time, "How come you look so healthy?" Now, of course I was blessed with natural beauty by my CysticMommy , and also schooled in a variety of beauty-upkeep-related funlings by CysticLady . So, they get a lot of credit here. I mean, genetics can't screw you every time. But here are ten beauty secrets I have long-utilized to keep my Cystic Sexy Ways. 1. Bare Minerals makeup. It is every bit as good as those infomercials. This makeup completely changes how I look. My friends do not believe me, they think I don't wear that much makeup. But if I don't wear this makeup for even one day, there is 100% guarantee that a co-worker, friend, family member or acquaintance will accuse me of feeling like shit. I have literally done a sales pitch for these Bare Minerals people at Sephora because I'm such a crazy believer. Try it. 2. Abs and Buns of Steel videos from th

Randomling with news: moody, selfish Transplant Gal

It has been an emotionally overwhelming week. I don't know where to begin with you, blog readers. I feel like there is still so much that my ever-growing audience does not know about me, and yet the blog must forage on and share some news that might shock the readers. I have begun the transplant evaluation process here. Since my lung function dipped so low (FEV1 low of 16%) following the hemoptysis/Pulmonary endometriosis breakthrough bleeding on my birthday, it became apparent that this year is the year for me to get listed. This is a big turnaround for me. I knew that this debate was coming. Honestly, I thought it was at least one year away. In my mind, I was going to power through the year and make some great new career moves, get evaluated for transplant next summer, decide and see IF I wanted to be on the list (or if that was even further down the line), and yadda yadda. Instead, here I am. I have always been a puzzling case of CF. I have had "severe" lung disease fo

What You Doin'? Home IV Therapy Schedule.

Well, it's been about six weeks of home and hospital treatment, and yesterday I finally got my port de-accessed. I am on a leave from work until I can be sure that I am up to returning (more details to follow . . . ), and I have been meaning to write a post that answers the question, What do you do all day during your home IVs? Here is my schedule from last week, without the med names to keep it simple. 8AM: Take IV number 1. (30 mins) Take inhalors and nasal sprays. Do nebulizer 1 (10 mins) Do airway clearance and manual postural drainage/cpt (20-40 mins) Do nebulizer 2 (20 mins) Take oral antibiotic, steroid, stomach medicine, special cf vitamin, probiotics and other meds for tummy, blood pressure pills (2), antihistamine pill to counter drug interactions, take vitamin K to prevent bleeding. 9AM: Personal Care Routine: Shower inc. more airway clearance, Hair, Dress, Become generally glamorous 10AM: EAT 12: Cardio Exercise, then eat more. Take more probiotic Sometimes, I would

My Underwear Drawer: A Fair Representation of Me

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A little known fact about CG is that I came of age in a house run by a woman, my CysticMommy , who worked for a lingerie company. I was the only seventh grader to wear a hot pink bra and thus began a life of altogether too much attention to underwear. CysticLady shares this passion handed down by CysticMommy , and writes, I like underwear , to me, as I sit here typing. I have come to understand that my current state of being can be easily assessed by looking into my underwear drawer. All a mess? Thus, I am a mess. Empty? Thus, I am empty. All neat and colorful? Ah. Thus and thus and thus. Tonight, in an attempt to put order to the chaos around me, I decided to spend time doing one of my very favorite CG things to do: organize and categorize, prioritize and synchronize my underwear. Thus. I have learned: A few weeks ago, I was the ball of white in the back of the drawer. Now, I am all the way to the right. Basic. Functioning. Solid. Soon, I will back in the middle. Colorful. Content.

This is an old video

About a week ago (Wow, it seems longer ago than that!), I made this video. When I looked at on the very small screen of my digital camera, I was pretty happy with it. I looked okay, and sounded okay, and though the image was dark, I figured, it was good enough and informational. Then I downloaded it onto my laptop and watched it again and was really quite astonished to watch myself in nearly life-like-size, and to see and hear how out of breath I sounded even though I was wearing my O2 and sitting. I wondered, "How long have I sounded this way?" In my work, I have the opportunity to hear my recorded voice fairly regularly, and I tend to have a good ear for how my projected voice sounds while I am working in rehearsal or on a mic. (I admittedly have no attention to how my voice sounds when I am not working which is one of the many reasons I have so many vocal problems . . . ) anyway . . . The long and short of it is that I didn't end up posting the video because I did not

Stream of Consciouness Is The Best Way To Write

When you write so much and so fast and you try not to stop and don't stop if you spell something wrong except for when you type sometimes it happens auto- matic -ally so usually i don't do this type of writing on a keyboard i prefer to do it with my hands so this is really an experiment and the one thing you try not to do and by you and mean i try not to use any sort of punctuation just try to get the juices flowing since it is 11 o'clock at night and though i like to start to write at ten, 11 o'clock at night will do today was hard. well there we go. today was hard and i went to the doctor and also i brought my friends one was human and one was pharmaceutical and both made passing the time easier except for that i was still bitchy sometimes on accident and playful sometimes on accident which really isn't that much different than the way i am in real life like not at the doctor it is weird that my type type typing fingers had to spell doctor twenty thousand times th

Breath Sentence is a Great Blog, Too!

Read THIS blog if you are interested in knowing some of the things in a cg's mind when she's feeling down about how people react to her illness. I couldn't, or shall I say, didn't, put it better myself.

Unleash Your Story Newsflash!

Team "Cystic Gal" was the Top 2 money earner for the CFF Fundraiser, "Unleash Your Story!" Congrats, Team CG! About 1/2 a month left! If you would like to donate to the CF Foundation as a thanks to me for reading this blog, or you know, just for the karmic boost, you can visit my fundraising homepage HERE . PS. I republished the poem from last night, "Once Or Twice A Day (as needed)," below... Quality post to follow . . . !

Once or Twice a Day (as needed)

(Back per reader requests!!) Falling down the rabbit hole Trip-drop trip-drop Tumble down the rabbit hole Flip-flop flip-flop. Colored little rabbit hole I love my home The place where I go to know I'm all alone. Lovely blanket Fuzzy socks Sleeping well and No one knocks. Eating snacks And warm meals too Milkshakes, ice-cream Much to do. Lower down the rabbit hole Slip-hop slip-hop Reviewing all your notes and papers Flip-flop flip-flop Lovely little rabbit hole I call my home The place where people come to see If I'm alone. Heavy soul And sweaty shirt Waking often Feeling hurt Refusing foods And tummy's hurt That looks gross Might just eat dirt Living in the rabbit hole Down Down Fall Wanting to climb out again Once and for all. I continue to wonder what is going on with this poem. I took it down from the blog to put it into a new format, only to realize, no, I like the format but not the order, the direction of the poem but not the place where it ends up, and I think it i

Oh I Want To Go Back To That . . . Dear Old Dirty [Blog]

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Ten O'Clock is my favorite time of night. So quiet. Too late to do anything productive or useful. Too tired to do anything important. But early enough to still be here, at the keyboard writing to you. Lately, my readership has grown. STAT counter has individual IPs at over 3500! That's crazy. And daily readership is about 135. GREAT! One problem: I've gained a lot of personal readers and friends reading, but lost some of my core CFers . I must gain them back. Dialogue with the CFers is the reasons I started the blog! I have decided to revert my blog to its most original intentions: to be a magazine-format blog where I wrote longer posts that covered topics of value to the average 20-30something cystic gal (or cystic fiBro ). My health experience is changing right now, yes. The topics I cover may end up being completely different topic than those I thought I would be covering when first I sat out to do this blog in June, yes. But the blog will remain in tact. I want to b

CG Diction-Ary

Here you will find the CG way to explain some of the medical terms and hospital jargon that is brought up in the blog, that a lot of CFers and families know about, but some other friends/fam might say, "huhwhat?" about. These are not medical definitions, they are in my own words. Alpha-Order, for your Alpha-Ease. "CF"- Cystic Fibrosis, as in "I have C bleeping F." "CFRD"- Cystic Fibrosis Related Diabetes, as in "I can't believe that because of CF, I know have CFRD." Endometriosis- Uterine (as in, uterus) tissue growing outside of the uterus itself. (no funny example sentences available.) "FEV1"- Forced Expiratory Volume over 1 second: during a pulmonary function test (PFT), a patient's ability to blow out a volume of air in the first second of exhaling. An important measurement of pulmonary health. As in, "What's your FEV1?" or "My FEV1 is 16%." "FVC" - Forced Vital Capacity: during a

Breath (a poem): a work in progress for today, Wed.

[This poest has been deleted because it is included in my chapbook, "Into the East."]

"Cyster Fibrosis"

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CysticGal(l) and CysticLady(r), approx. 1983? I grew up with a sister with CF. (CysticLady) Yesterday I heard this is called having "Cyster Fibrosis." I've been trying to write a poem to talk about what it is like to grow up with someone who looks just like you talks just like you thinks just like you like any other sister but who is also carrying around all of this. I'm literally going to go dig in the basement for a journal. I'm going to start looking there. In the past. Yesterday I talked on the phone with my oldest friend, S-Bestie. S-Bestie (l) and CysticGal(r)- My Birthday, 1985 She and I grew up with each other and knew each other since we were very small. We lived in the same neighborhood for awhile, when people still played with the other kids that lived right there in their neighborhood. Then I moved, and moved back, I went to college, and she moved to Colorado. S- and I have always talked a lot over the years. But she is still my best friend. It was go

Read "Breath Sentence" blog, too!

More tomorrow. I'm to bed soon! Love, CG PS I will be following up on last night's post, but implore you, if you are more into reading than watching tonight, to read this wonderful response written by "Breath Sentence," who realizes that if she took a page out of the CG book, her abbreviation would be BS. hee hee. This blog post by BS is really not any kind of BS. It's some GS- GOOOD STUFF ;0)

I Know It's Late and I Know You're Weary: Advice on Big Talks?

I wonder, how often CAN I use early 80s song titles as my blog post titles? HOW OFTEN?!! I am up late and thinking about a lot of things. I was just looking at my childhood best friend (S-Bestie^)'s blog about her artistic life. There she is, living there, a fabulous artist in her own right. I am here, living all the way over here, and thinking I'm some sort of artist too. But I never have made art with her, and yet I think her visual art relates a lot to my theatrical and written art. Interesting. I am also thinking a lot about news and refer you, CG Readers back to a post written by the famous CF Husband on his blog, about the difficulty of having these big talks about the big moments of our lives. How do we find the energy to have these big talks? When do we find the time? How many days will go by that I have to have a big talk? I wish people still did not have computers, I could write letters to those I really love and not have to worry over the controlled release of my o

Funny List Already Created, and Missed Blog = Read This Other Blog

Tonight I was on CF2Chat, trying to find someone to chat with, namely Piper. They had a quiz that is way funnier than my list earlier this week. This quiz shows how many CF people feel when people react to their coughing. Of course people are trying to be polite, but 27 years later, after about 6 coughs an hour, in a 40 hour school or work week, that's.... almost 7,000 times CFers hear these : Most annoying response to your coughing, from a stranger... (please pick 3) "Would you like some water?" "Don't cough up a lung" "Here's a cough drop" "Are you ok?" "Do you have Swine Flu?" "Don't die on me" ::stare:: "Sounds like it's time to quit smoking" "That sounds like Bronchitis" "Something go down the wrong pipe?" (Getting up and sitting somewhere else) *********************************************** In other news... because I missed a post last night, here is my direction to

I don't think CF is a gift from God.

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I believe the following things are the gifts given to be my God and the Universe: 1. My birth 2. My parents, CysticMommy and CysticDad 3. My siblings, CysticLady and CysticSibling 4. My best friend, S-Bestie. 4.5 My many mentors growing up and currently. 5. My laugh and each of the moments when I have had reason to use it. 6. My sense of humor which is an indirect gift from God, given to by through my Cparents, my grandparents, my aunts and uncles, and my Csiblings, and S-Bestie. 7. The town I grew up in. 8. My cat, B-Kitty. 9. My dog, Gracie, who has passed. She was a gift from God to my whole family. 10. My creativity. 11. My writings. The best things I have ever written just come to me. I do not even feel that I own them sometimes. 12. There is one thing that is a gift from God but I'm going to keep it private. But H-Mama knows what it is. 13. The men I have truly loved and the feeling of falling in love with them. 14. When I go to heaven or get to be an angel or am reincarnated

I Am No Dragon Slayer

I am a dragon. I fly through the sky though heavy with wings like steel, never tiring . I land upon the sea perched on delicate feet, never sinking . I plunge to the deepest depth of the sea, never gasping . I do not need to breathe like you. I do not need to breathe. I am a green white pink white purple white dragon. I float into clouds and am invisible. I climb among trees and am a giant. I balance on the mountain top only to witness. I do not need to rest like you. I do not need to rest. I am a mythical, imaginary, remembered and forgotten dragon. I do not fly among you, but I would. I may not fly forever, but I could. I will not fly in silence, though I should. I am not defeated by you. I am not defeated. I am a dragon. (c) 2009 Mary ElizaBeth Peters Original Last 2 Stanzas I am a green white pink white purple white dragon. I sneak into clouds and am invisible. I climb among trees and am a giant. I perch at the top of a mountain only to see. I do not need to rest like you. I do no

Commentacular

This a post inspired and edited from comments made on my infamous post, Ten Things A CG Wants to Say that caused the internet sensation! This post comes more properly prepared with its own disclaimers! I presents to you: Ten Things a CG Hates to Hear by CG et al. 1. "Your cough sounds just like mine. I had that last week! It was horrible." (Teeda/CysticLady) 2. "Don't you go dieing on me!" (Ronnie/RunSickBoyRun) 3. "Will your grow out of it [cf]?" (Deb Wilson) 4. Complete silence in the room just as a coughing fit starts.* 5. Why are you still working? Couldn't you just, like, go on disability or something? I would never work if I had what you have.** 6. You have such a bad attitude about your illness. I saw this one interview with Michael J. Fox . . . he has a great attitude.*** 7. So you're better now, right?**** 8. Have you taken your [son/daughter] to the doctor? / You should get to the doctor! That cough sounds rough!***** 9. (Dramatic si

Exercise Tracker

Wednesday, Sept. 23: I've been exercising all along but lost the will to post it every time. Now, I'm gonna start posting it again. Today: Woah major exercise today. Using 4.5L, I walked 1.3miles at a max rate of 3.2 mph, over 30 mins. :) sweat sweat sweat ******** Saturday 7/25: 20 minutes treadmill with 4.5L O2 and at 2.5mph.. Top of Target Heartrate. "Set of 10" - 10 of each of the Jackie Warner moves. Checked the O2- in the clear. Full steam ahead with Core and Upper Body Workout tomorrow! Workout Grade: B. Airway Clearance Grade: A+ Other Medical Stuff Grade: A+ Friday 7/24: Personal Disaster today and still struggling with the O2. Workout Grade: F. Airway Clearance Grade: A+. Other medical stuff grade: B Thurs. 7/23: Very rough day at work. Hard to get around even with supplemental O2. Just did 15 minutes on treadmill with 4L O2. Workout Grade (7PM): Inc. Airway Clearance Grade: Inc, C+. Keep up the good work. Wed. 7/22: Will call doc tomorrow. . . that's