Monday, August 31, 2009

Oh, America, you crazy dazy country full of CG Readers

It's funny, I was just thinking:

I wrote a post that made fun of a bald guy, quoted but did not name a former co-worker (who frankly, no one liked anyway...and it was like 7 years ago), dissed casseroles, and shared a sad feeling, and I got 12 comments, 3 emails, and 5 phone calls.

I wrote a post that told you that not everything I write is true, that I reserve the right to delete your comments, and that delves into the emotions instead of just labeling them- and no one responds.

That "Readers' Digest," they're really on to something.

Ok, enough about the blog. Back to the regular topic: ME!

Tomorrow is the Kickoff of the "Unleash Your Story" fundraising event for the CF Foundation. I invite you, implore you, demand you to join Team Cystic Gal today! You don't have to donate money yourselves, I mean - some of you are poor! unemployed! cheap! - but if you can get some other, kinder, more-employed, less-cheap person to donate even one hard-earned dollar (or even one that they found in an old coat pocket), you are the team member I need! Click HERE to join!

My sister, CysticLady, started a bloggie of her own! Click HERE to find out about her journey to the US Transplant Games in Madison Wisconsin one year from now! Also, see funny videos of me and my family cheering her on. CysticLady and Cystic Gal are pleased to bring you future posts in this CysticFamily Fashion. It's like the Simms. With coughing! Also, you can experience a cruise with the CysticSisters if you choose to click on that label.

I have to save my better, more poetic brilliance for tomorrow- when the unleashing begins!!


Sunday, August 30, 2009

A follow up to NUMBER 9 (...Number 9... Number 9 . . .)

Such a firestorm was lit by my little top ten list, Ten Things a CG Wants to Say last night. I am so glad I wrote it, but what a whacky ride today was watching the comments and emails and some phone calls come in.

Two and a Half Points for ToNight:

I feel, at this time, that I must be honest with you, the reader, and tell you something about the blog that you might have already intuited through reading it, or you might not have. This might be an element of the blog that you view as a turn-on, or a turn-off. This might be something you had not considered but do not really care about either way.

Any way you take it, I must share with you that everything I write in this blog abides by a code of truthiness. Not a single thing in this blog is a lie. However, some things may not be particularly true.

[Truthiness is a term first used in its recent satirical sense by American television comedian Stephen Colbert in 2005, to describe things that a person claims to know intuitively or "from the gut" without regard to evidence, logic, intellectual examination, or facts.[1] ]

For example, in regards to yesterday's list: I posted it yesterday, but I started writing it weeks ago. So, there is no really true time-stamp on things said in the blog like "yesterday, last week, this year..." etc. I've been a writer for about 23 years :) so I have a pretty big pool to draw from. And I'm not even kiddin' about that, y'all.

Not a big deal on the one hand, because I just want the writing to be truthful and have an effect. On the other hand, when I sent out Ten Things a CG Wants to Say last night, people were calling me and asking :

1. You got dumped by a bald guy last week? When did you get back with HIM?
2. I thought you stopped talking to your neighbor?
3. Why are you still on that chatroom?
4. Who called you from work and oh my god, what did they say?
5. I did send you a card, thank you very much! ...


Notice, the topics was "Ten Things a CG Wants to Say", not "Ten Things THIS CG Wants to Say." I have an idea for a post tomorrow based on a tweet I got today. That blog is going to be written for that tweeter. I want to write things that I think are universal for the patient experience, not all of them are going to be true for me in the very moment that I explore them on the blog.


I will be deleting comments that are personal narrative or use my real name or town or etc. Though I currently use my name on the blog, I work in an industry where I am always up for work, getting work, being googled, etc. So, I might periodically go anonymous on the blog and just take my name off it.

I also want to continue to use the blog to serve its audience, not my personal correspondence. That's what email and facebook are for!


What a wonderful conversation was opened up surrounding the topic of privacy vs. support at the bedside! My own T-Money and I had a wonderful conversation about the delicate balance it is to be a patient in the room, and a caregiver at the bedside. It seems that the moment a patient wants to be alone, it can be closely followed by the moment s/he wants a companion. No one has a proper etiquette book and CF can be an ugly, indelicate, impolite disease.

Sometimes patients want it all: They want to have privacy when they aren't at their best, but they need arms around them to help them feel better. Caregivers want it all too: They want so badly to do "the right thing" when none of their actions feel "right" because the situations themselves are very difficult.

My CysticMommy and I then talked about my responsibility to work on saying what I need when well-meaning friends come by my house and drop by with food. I could as easily say, "You can put the casserole down, I made coffee, tell me what's going on with you. I miss you!" instead of letting them lead the conversation and come and go so quickly.

Then, CysticLady and I talked and she shared that it's just good to get it all out on the table. With CF, most of the day we are battling battling battling to put our health first. It can be exhausting sometimes to have to be the director of every little thing like the smoking man at the cross-walk, or the neighbor at the end of the driveway. Sometimes you just gotta let it float by til a few months later you write a funny/sad blog about it!

Goodnight y'all!


CG Readership swells to greater than 100 daily readers!

Check it out!!


Saturday night's post, "Ten Things a CG Wants to Say" is below . . .

Saturday, August 29, 2009

Ten Things A CG Wants To Say: The post so crazy even my disclaimers need disclaimers.

1. To the guy that broke up with me right after I got out of the hospital: You are cowardly, and selfish, and also bald*.

2. To the neighbor who keeps asking me when I'm going to get better: I am not going to get better. Google CF already.

3. To the lady who keeps sending me bizarro emails about one of my comments on health care: Democracy and free speech are a bitch. Leave me alone.

4. To [people] who wondered why I'm still working: So that I can do fun things like buy groceries and pay my rent. Oh, and because I love my job and I'm actually really good at it.**

5. To my extended family members who don't send me a get well card anymore when I get sick: It would be nice to get a get well card when I get sick.

6. To my acquaintances who want to drop by the house: I don't need a casserole, I need you to hang out with me like a normal human. And I don't like casseroles.***

7. To my cat who is sweet, laying in bed with me while my port needle is being changed: You are the best and could you write a book on dating for men who date women with CF?

8. To the person who smokes a cigarette next to me outdoors and waits until I ask them to move away from me: Move away from anyone that you see with oxygen on and quit smoking already.****

9. To the people who visited me in the hospital that literally ran out of the room when I started coughing: I know you were trying to give me privacy, but that made me cry.*****

10. To the nurses and doctor and family and friends and bloggies that are nice to me even when I'm crazy: Thank you and I'm sorry.

Love, CG

*I would not normally make fun of someone for being bald. In fact, I believe the saddest thing to come of this last relationship is that now I am, in fact, attracted TO bald guys. However, I couldn't think of anything else mean to say and the one thing I know about bald guys is that they are sensitive about being bald.
**None of my current colleagues have actually said "You should stop working," to me. But, it's an idea out there in the world. It's an idea. Like it's an idea that people think about their oldest co-worker . . . "Why is s/he even here?" Go on, admit it. It's an idea out there.
***I am going to work at saying, "Please bring me yellow curry chicken (thai)" and "Please come in and hang out for a while. I miss you." even if it's sort of awkward.
****Yeah yeah yeah, nicotine is an addiction. So is heroine. But I don't have to walk through ten heroin addicts on the way into any public place, and if I did, I wouldn't feel bad giving them a weird look either. I just think it's really funny when I'm standing somewhere, like at a crosswalk, and a smoker comes up and stands next to me, looks at me, I look at him, and then it's like, "Which one of us is gonna walk away?" - as though it should be me? Isn't there some sort of chivalrous smoker etiquette? Where is Emily Post when you need her.
*****See future posts. This one really started a firestorm! This is not about YOU. It's about PEOPLE who visit PEOPLE with CF. And maybe a little about you. But not in a mean way. Just like, something I'm thinking about. Let's keep thinking and chatting about it. Okay. 'Nuff said.

Friday, August 28, 2009

There's Always Tomorrow

Today was not that much better than yesterday. But it was better.

Things that made it better:

1)I called the CF Clinic and said, Hey man, this thing where I have to take 1/2 of my anti-depressant because of it's contraindication with my oral antibiotic is, like, uh, not working. Since I'm crying and sleeping all day and stuff. So we agreed that after these 3 weeks, I can go back to the antidepressant at full blast and stop taking that particular antibiotic (1 of the 3 I'm on currently).

2) I called my friends back (T-Money and H-Mama). Both called me yesterday and though I have to admit, I didn't really enjoy talking to them since I was all doomy and gloomy, it was better that I talked to them. Ditto for CysticMommy and CysticLady.

2.5) I still took a nap. I decided that no day is so bad, or so good, that taking a nap cannot indeed make the day even better. KEY: I limited my nap to a decent 2 hours. A normal-people-nap. I even answered my phone when N-Pregg called from clinic. I was not in the DOOM NAP. I was in a normal sleepy nap.

3) I had dinner with T-Money, H-Mama, J-Frusb, J-Baby and M-blankie. Nothing to brighten the mood like meeting a friend's new cat and holding a friend's baby, who officially learned what an "owwie" was by pointing at my port site. I even think I heard her say "All wrapped up!" back to me as I explained it to her. That J-Baby, she's a J-Genius. I also used my crazy cat lady skillz to coax M-blankie out from under the bed.

4) I outted my blog onto my facebook so now my blog is officially out of the closet. Everyone in my life can read the juice details of this health conundrum I'm in. "And F 'em if they can't take a joke" about some of the posts for chriy-yie.

5) I made dinner plan with a certain gentleman tomorrow for Jazz music, O2 sniffing and yummy food. It is certain to be the best non-date I've had in awhile. (Though I'll miss J-Teach, who is out of town).

In closing of tonight's post:

To Feel Better When You Are Extremely Gloom and Doom (EGD):

1. Do not pretend you are over the gloom or the doom (OGD) until indeed you are OGD.

2. Communicate with your docs when you are feeling EGD. Ask yourself, "Are there any chemical reasons that I am EGD?" Things that can lead to EGD: changes to psych meds (duh); pain meds; low O2; hormonal changes (either pharmaceutical or natural); alcohol use; low blood pressure; nutrition problems; blood sugar problems; etc. Adjust what you can with your doc's approval if you sense a problem.

3. Call back at least 1/2 of the people that call you (let's be realistic here.) See #1. It is very important to remember #1 when you do #2 or you will have to revert to yesterday's post altogether.

4. Call back family members and still adhere to #1 unless indeed you are OGD.

5. Take a reasonable length nap. There is never a day so good, nor so bad, that a nap cannot make it infinitely better.

6. Create a specific plan to be around another human, any human, and consume foods. If pets and babies can be involved, all the better. Pets nor babies are capable of EGD, and being around them increases the chances of one becoming OGD at a faster rate.

7. Be more honest with more people about your feelings. This is a good non-EGD rule as well.

8. Make some special plans for some special sort of something to happen at a future time, so that you will look forward to it and have a goal to be OGD by that time.

Goodnight and a non-EGD day to you,

Thursday, August 27, 2009

CG and the Terrible, Horrible, No Good, Very Bad TODAY

Okay I made it through one bad day. One bad bad bad bad day.

Today, it was the sort of day where CG feels hopeless about her health and her personal and professional life in one big ball of sad sad sad, bad bad bad day.

The good side of today: I made it through the day without sending angry sad sad bad bad emails to my ex boyfriend across town, or the two friends I have lost in the last six months. Similarly, I did not make any rash family phone calls. I managed to delete the few snide comments on made on Facebook. I DID manage to take all my meds and do that whole regime, complete with a PORT needle change, with only one small anxiety type of situation about the needle's length. Also, I talked to the three people that I can talk to when I am in this slightly incoherent state of hopelessness and nose-blowing. Three. That's a lot.

The bad side of today: I slept most of the day. When I wasn't awake and crying, I was asleep. That can't be good. And I accomplished nothing nothing nothing that wasn't on my "health" list of to-do's. Also, the bad side to today was that I had today at all.

Tomorrow will have to be better. Because it won't be today. So that's good.

Love, CG

I'm Ok, You're Ok

Thanks for the messages and tweets sayin', "Hey CG, where you AT?!"

I had a poopy appointment at the doctor yesterday and I've been in a bad mood for two days. Hence, I have not posted anything. Yet, I am fine. More later today. I'm gonna try to write today while I do my meds even IF I'm in a bad mood about it.

So there.

And my cat is acting old and sick.

:( That doesn't help.

At the doctor yesterday, my anxiety was really kickin' in. Plus two drugs I'm on increase my blood pressure. So my blood pressure was high and we thought, let me take some time and CTFO, chill the f out. During this CTFO time, they brought me jelly beans.


I think not.

More later.

Sunday, August 23, 2009

Another Big Win for the CG Breakfast

Thank you, Reeses Pieces and String Cheese.
Though others may judge you, I never will.
For though your taste combination seems odd,
You have given me 5 extra pounds
In only one week
While out of the hospital.

Saturday, August 22, 2009

Thursday, August 20, 2009

Paparazzi, BACK T. F. UP!

Photo of me. :)

Dear CG Readers,

This is my 100th post. It is not just a cosmic coincidence that last night I was on the phone with my friend Kathleen Rooney, asking her, "I think I should stop being anonymous with the blog - Go public -What do you think?" (She agreed that I should and coached me through it. Big thanks, KR!)

The blog has been receiving some web mentions, one in particular for the "Unleash Your Story" fundraiser for the CF Foundation. I am going to be participating in this fabulous event and will write a post either later today or tonight outlining the event and inviting YOU, CG Reader, to join Team Cystic Gal! In the mean, time, read this article, and slay the dragon in your life today!

With love and non-anonymity,

Cystic Gal, ME

Congrats 2,000th Unique Reader!

It's YOU, Reading Pennsylvania!!

You are my 2,000th Unique Reader!!!

Email me and I can check your IP address and you will receive a luxurious grande prize!!!*

*Under no circumstances will I be sending you a prize. Get over yourself already. Jeeeeez. But, thanks for reading!! And please, DO email!!!



CysticGal now tracking 2,000th NEW reader via! !

Are you the 2,000th new reader ?! #CysticFibrosis

Wednesday, August 19, 2009

In the Year Two Thousand . . . In The Year Two Thousand Nine

Me at home on Home IVs Day 2: 2nd Day of Home Workout, post-hemoptysis. More on revised exercises sitch in later bloggies . . . P.S. Who knew that a port, and a tube top, go so well together? Ah, home gym in the corner of my living room, I love you so. I would gladly forego new blue jeans and fancy I-Pod for you anyday. If only the other CFers would all do the same. Sigh . . .


In the Year Two Thousand . . . In the Year Two Thousand Nine . . .

Lately I've been asked my many Readers to tell more about my CysticGal demographics and specifics. Hard to do when CG is still in the semi-anonymous state that you read here. I'm going to dive on in and just keep using my very secretive, highly strategic pseudonym creation calculation to tell the story of CG. Just so you know, I am only keeping CG semi-anonymous so that if people google my real name for work-related stuff, they don't get this blog. The people in my life know that I'm writing it, and you know, it's really me, CG here. :)

I am going to have to do this in shifts, so everyday I'll add more posts to the "Who Is CG?" section that is rolling out, and then when it's all out there I'll edit it together for your reading ease. Okay...

I am getting more questions about my situation right now, than I am about my situation in the past, so I'm going to tell the story of CG backwards. Those IRL friendly readers may laugh, here she goes again, writing all chronologically-askew. So sorry. It's the way my brain works, man.

Right now, in the year two thousand nine, I live in new england. Demographics: I am 29 years old. I am a Gal. I have CF. I do not have CFRelated Diabetes. I have a history of Pulmonary Endometriosis and have heard varying opinions on whether that is the same thing as catamenial hemoptysis. Either way, I have that too. I weigh about 98 lbs. and I'm 5' 1". I just had my first Port-a-Catheter placed last week. Prior to that, I think I can count 6 or 7 PICC-line placements in my life. Prior to my first PICC line in the year 2000, I had not had a hospitalization since approximately 1988. My health was managed with outpatient courses of oral antibiotics through my late childhood and adolescence.

The meds I take have not changed that dramatically since, I'd say, 1995, other than when I am having an acute exacerbation. In 2005, after moving to new england, I had a year-long battle with catamenial hemoptysis that ultimately resulted in me being diagnosed and treated, very successfully, for pulmonary endometriosis. Recently, I experienced a big bought of catamenial hemoptysis again, and was treated presumtively for pulmonary endometriosis. I hope that this treatment can ironically lead to an up-swing in my health.

As of 9/1/09, my FEV1 is 16%. In May of 2009, my FVC was 31% Predicted (FEV1 22%) after a course of IV antibiotics. Prior to that course, in October of 2008, my FVC was 43% (FEV1 28%) after a course of IVs.

I am single single single. I have no kids and 2 cats, S-Purry^ and B-Kitty^. I have a few close friends and a lot of long-term friends back home where I grew up, which is not where I currently live. I have a lot of really close work friends because I work in an industry where your work and your social life are sort of mixed and oddly intimate. That makes me sound like a prostitute. I'm not a prostitute. Jeeez. This paragraph is going in the wrong direction. I'm a drama teacher. Now the googling stats for my page are really gonna soar though, so I'm leaving it!

Anyway, back to the facts: I have two siblings. One is four years older, CysticLady^. One is 18 months older, CysticSibling^, a boy. My parents are married and live far away from me. My Csiblings also live far away from me.

My sister, CysticLady, has CF and is five and 1/2 years post-transplant. I believe that she and I carry the same CF gene (there are different variations, I believe we have the same one). My sister was transplanted at the age or 27.

My brother, CysticSibling, does not have CF, and I believe that he does not carry CF either.

There is no other history of CF in my family other than possibly a great great aunt on my mother's side who died very young. However, she could have had TB, right? I believe that I inherited my CF gene from my mother's father and my father's mother, but I could be wrong about that.

I am a theatre artist and teacher by trade. The only way I have ever made a living, with the exception of 6 months of nannying after I got into grad school but before I started it, is by creating theatre, working for a theatre, or teaching others to create theatre. But that isn't the topic of this blog, now is it? More on that topic later.

I work full time, though I'm currently on a short leave to attend to my health.

More tomorrow. Love to all,
CG from the CG-at-home-Hospital

Tuesday, August 18, 2009

Picture of the Day

First day home from the hospital. Full report:

I accomplished all of my hospital related tasks. Only exception: I did pulmozyme once and hypertonic saline once. Did not do either of them twice. Figured, first day home after hemoptysis. Takin' it easy.

I worked out for 20 minutes and it went well. I wore my oxygen all day and the only time I left the house was to go to CVS (ahh!) and to go the vet to get antibiotics (ironically) for S-Purry^.

Wanessa (ahh) comes tomorrow. Last week, she must have thrown out my Yuckie cup. So today, I had to make a new one. My yuckie cup is where I put the yuckies. I like it better than little diseased dixie cups in my house or in my garbage cans. I put my yuckies in it, and then I rinse em down the toilet, then I squirt some sort of yuckie-killing household cleaner (whichever one is around) in there, and rinse. I take pleasure in writing YUCK!! all over my Yuckie cup so that I know never to drink from it, and that it is okay to clean it with household cleaners. Neither yuckie, nor bleach residue, should ever go IN. They only STAY OUT!!


Home Again, Home Again, Jiggety Jig

I am home tonight. Thus, an equation:

1 Cystic Gal+
2 Cats +
O2 Concentrator+
IV Meds+
Normal Meds+
Peapod Delivery+
Laundry Drop Off+
Wanessa (if you don't know, you haven't been reading!)+
Full TIVO+
H-Mama, J-Frusb, T-Money, J-teach+
All of my colleaguial love and support+
Bloggy Following and Support+
Awesome CF Team+
At least 3 Faux-Boyfriends=

1 Happy, but busy, Cystic Gal at the at-home hospital

More tomorrow! L'Chaim!

Friday, August 14, 2009

CG Readership Stats for August, 2009

CG Readership Stats!

Because I missed a post while in the hospital, I invite you to read the readership stats as updated recently. I am excited about the growth of my blog, in just 60 days of writing!!

*All stats updated on 8/15/09
**All stats prepared via - it's crazy psychic.

1,814 Unique Readers.
818 Returning CG Readers

80 Daily CG Readers
16 New CG Readers Daily - Holy Poops!

31 US States with CG Readers!
Most (163) Readers are in Pennsylvania - and I don't even live there!
11 Countries with CG Readers!

84 Twitter Followers
35 Bloggy Followers
8 Medical Professionals Who Read CG! (8/1-8/15)- I would like this number to grow
0 Real Complaints, 1 sort of casual complaint

Crazy Facts: 7% of CG Readers found my site by googling the word "yuckies"
32% of CG Readers spend more than an hour when visiting the site.

Thursday, August 13, 2009

A Poem From The Hospital


Began the day with brushing teeth
Like other days, lungs gave me grief.
"Port placement will be first thing," they say.
I change my shirt, and I'm on my way.

Then pulse climbs high, O2 drops low.
The sweat starts seepin out.
Time for freaking-out-relief.
My lower lip begins to pout.

No valium says the nice P.A.
It will mess up your sedation.
Oh me, Oh my, "I'm freakin' NOW-
"Don't you see the situation!?"

Dr. U-Bird^ and his friend N-pregg^
came to have a calming chat.
Then ativan helped us all out
I was calm, and that was that.

In the scary surgery room,
I fell fast asleep and don't recall
They made some cuts and balloons and such
That is my memory, none at all.

I slept it off, my head did hurt.
My chest felt sort of odd.
I wake up later, groggy at first
Not too much to check my bod.

My port placement looks so super nice.
My boobs, I checked 'em double twice.
Not too high and not too low.
Sex'll be great and it still won't show. *in clothes

The day goes on and then it ends
Not yet going with the flow
I try to rest but feel awake
Despite the Oxycodo.

Love, CG

Tuesday, August 11, 2009

My Birthday Totally Blows

It is my 29th birthday today.

Girgle Girgle.

Last night I had a fun dinner planned with an attractive male companion.

Which is, you know, the perfect time for hemoptysis.

Girgle Girgle.

My night was ruined.

Later, getting ready for bed (alone, duh).

Girgle Girgle.

Sleep, ruined!

Today, on my way to rehearsal for a perfect

Oh wonderful play with a wonderful team of wonderfuls

Girgle Girgle Flood Spit Flood Spit Flood Flood Spiiiiit.

(Flashforward 12 hours)

To bed, in the ER, still waiting for a bed.

More tomorrow.

My Birthday Totally Blows.

(So just in case that wasn't clear, I had a lot of hemoptysis two times this morning, after 2 lesser times last night, and with my history decided to come on in. Now, waiting for a bed, started some IVs, tomorrow starting some hormones and getting my PORT put in. So keep those "your boobs'll be fine" comments coming. And I'll miss the rest of the play I'm directing with at least 2 new fabulous colleagues which was a wonderful opportunity to me that is now ruined, and and and I have to cancel a party on Saturday. And, it's my birthday. Have I said that already? So yes, I'm a brat right now. I'm going to bed now. So there.)

Love, CG

Monday, August 10, 2009

CG issues a public apology to male readers

I'm sorry for talking about my boobs so much. One more week, gentlemen. Hang in there.

Ok. I'm in the hospital and I'm getting my port in tomorrow. Thus, I'm going to read as much as I can about it tonight so I'm feeling super prepared. UNLESS, I start to feel more anxious. Then, I will stop reading.

More later.

Please follow me on twitter for live hospital-tastic updates!!

Sunday, August 9, 2009

I Work Hard To Be Pretty

Tonight I was going to write a great article about vanity in the Cystic Gal equation, and reference a poem by my friend K. Rooney, which references something I said once, or maybe a couple of somethings a few times. So really I woulda ended up skipping the part where I reference her and just reference me and then brilliantly extemporize.

Then I worked out.
Now my headache is back.
Now I'm to bed.

I'm zeroing in on the headache being caused by higher use of supplemental O2, which does NOT lead to low O2, but might lead to CO retention. I'm a disaster.

Doctor next week.

This week, L'Chaim.


Saturday, August 8, 2009

"If You Can't Be With the One You Love . . .


Go to CVS.

That's right. Go to CVS." (I have been told that those are the original lyrics to that song).

When I am not feeling good, there is simply no better place to venture to, than CVS. (Or Walgreens, or !!really!!, Osco.) After Cystic Lady's transplant, one of her very favorite things to do was to go to the pharmacy to get her new meds, and also many things that can enjoyed, both medical, consumable, and beautification related.

Tonight's purchases and also the highlight of my day: blood pressure taker thing; gummy bears; Vitamin B; Excedrin; and new eye makeup for green eyed Cystic Gals.

I might feel bad, but boy I look pretty :)

Goodnight y'all. I hope to send a good blog out tomorrow. Love, CG

Thursday, August 6, 2009

A Joke From God

I have a quirky relationship with God. Growing up Catholic, then straying/returning/straying/returning/un-declaring from Catholicism has provided me with a bizarre blending of the many ways in which the persona of God has been portrayed. Maybe you are like this too. You have a God that you think of, and you are certain that your picture of God is different than any other person's picture. Perhaps you and God share a chat every now and then.

My God is there for me for the serious situations. But he also has a comical side.

Every once in awhile, my God likes to send me a little sarcastic joke.

I promise you the below story is true.

I had a good day today at work, and tried all my magical ways to keep my oxygen perfect. (Laughter can begin here.) Despite my flawless and inspiring efforts at health maintenance, and a cup of coffee, I was developing a headache at the end of the day. As I made the heroic journey up the stairs from my basement, where I, like a good domestic partner to S-Purry and B-Kitty, put some laundry in, my headache became much worse. I stepped out onto my porch and sat, wearing my oxygen, trying to figure out if my headache was getting worse from climbing the stairs (I was low), or turning the juice up in anticipation of climbing the stairs (I was high/ dehydrating my sinuses). Feeling so very bad for my little self (sigh), I sat and became teary.


A robust specimen of shirtless athleticism rode his bike past my house.

I thought, "No wonder sick people feel like life is passing them by."

A mother and her teeny tiny baby (no stroller) passed by.

I thought, "Life is literally passing me by."

A car with a huge . . . ? magnet? on the car door, which said "choose LIFE" passed me by.

I laughed.

The moral of this joke to me from God: I was spending too much time on the porch feeling sorry for myself and not doing anything about my headache, or my life.


Wednesday, August 5, 2009

Oxygen FU, and Introducing....Morning Minis!

Hello My Dear Readership!

I only have a bit to type as tonight is dedicated to airway clearance, for serious, so I can only type while my Pulmozyme runs!

I have some Follow Up regarding oxygen for you! Thanks for your help last night. Especially tweeters.

Here is what I learned in my one day of research regarding my oxygen troubles, mostly contributed by Cystic Lady.

Tips on Oxygen for the Working (Cystic) Gal:

1) Always have an extra mini tank in your trunk that you don't use unless you absolutely have to. Like a "Please go to my car and get the tank from my trunk," type of scenario.

2) Leave an extra tank in your workplace.

3) You should not carry your tanks, even in that funky backpack thing, if doing so makes you use more O2. You gotta roll with it, baby! Use a rolling backpack or crate. I happened to have a small rolling milk crate that I call my 'rolly-do,' that I have used in rehearsals for years. Turn out, it work for rehearsal crap AND mini tanks.

4) It is better to stay at a consistent level of oxygen use than to take it off for vanity or convenience or whatever, and then have to spike it up when you inevitably go low. Even if your O2 will go a little high, leave it on at a low level if you are likely to get up at any moment (like, uh, if you're directing a play).

5) Think of your O2 like any other bodily function. If you had to go to the bathroom, you would not stand around for 45 minutes shootin' the s"breeze." You'd excuse yourself, and come back after you p"used the bathroom." Treating the oxygen use like an extra special errand just makes it bigger than it is. It's as basic as your pee, gals. You gotta pee, and you gotta get a new tank sometimes.

6) Call your oxygen company for the item that far and wide seems to be referred to as "that water bubble thingy." It connects to your "oxygen maker" (can you tell I'm not a doctor) and puts some water into the line so you don't run dry air over the sinuses all night and day.

7) Turn down the A/C. It will dry out the house.

8) This is not O2 related, but do NOT skip a cup of coffee that you usually have because your head hurts. That is BAD BAD BAD for your brain. Your brain needs all the help it can get when there is a headache. Do not deny it the daily pleasures it desires. (In other words, quit coffee on purpose, on a different day than your O2 headache day).

Oh no! Pulmozyme done...I have more to write but must do it tomorrow!

In other news: If you wake up late on the day that you schedule a morning workout- you can do what I'm calling "The Morning Mini." A fifteen minute cardio where you stretch as usual, 3 minute warm up as usual, and then increase intensity in walking/biking/etc. as your O2 and heart-rate allow to try to get to max by 12 minutes in...hard to do, but possible. Then cool down, stretch as usual. Airway clearance awaits...

CRUCIAL RULE FOR THE MORNING MINI: This was not a real workout. You must work out FOR REAL later in the day.

more, CG

Tuesday, August 4, 2009

Trifecta of Headaches: O2 call for help!!

I have been pretty down for the count these last two nights with the Trifecta of headaches:

Low Oxygen leading to Low O2 headache, leading to...

Lots of oxygen, causing very dry sinuses and THAT sort of O2 headache, leading to saline spray, tylenol and home remedies followed by a nap, leading to . . .

Sleeping through my 2nd daily cup of coffee, which all creates . . .

The low O2, dehydration, caffeine headache.


CG needs oxygen tips.

When your need for oxygen goes up, how to avoid running out of oxygen while AT work?

When your oxygen goes low, to bring it up gradually on low Liter volume, or blast it up with 3 or 4 Liters?

When your nose and sinuses are dry, best solutions? What's the AC got to do with it? Should I just turn the darn things off?

Should you take meds for the headache? Or does that make the dryness worse?

How does caffeine play into all this?

Holy poops I need some advice!! Please feel free to pass this on. I've been in the bed blinded with headache two nights in a row after two intense days at work where I was fine fine fine until I had to get up and find my way to my car :(

Sunday, August 2, 2009

Quickie 2

The second quickie is never as good as the first.
First you do a quickie and you think, hey! that was fun!
Then you do a second and you think, well that's just great. now we're at this phase in the bloggy relationship. already. that's just great.

haha. ok, I'll change the subject.

Exercise today- Remember about two weeks ago I gave up running and I wrote a big bloggy about it with Homer Simpson at the top? How could I forget? These past three days of trying to run again were more stupid than Homer J. Simpson. My workout is going great every morning until I try to run for a mesely (measily? meazilly? Is that even a real word?) for 45 FRIGGIN seconds (friggin is not a real word but at least I know for sure how it's spelled) - I am ruining the glory of my morning workouts.

Tomorrow, the true test. First day of rehearsal. Must exercise at 5:45. That's right, in the aaaaaaaaaa mmmmmmmmmmmmm.

It's a plan.

In the meantime, my yuckie production has quadrupled. If I were a Yuckie Factory, which by definition, the CFers are, I would be rockin the profits.

Go me, get my Yuckies out.

Only downside: sorta wheezy. I think this will pass. I have always had the trouble that the clearer my chest is, the worse my asthma symptoms are. Ironic how my lungs can get irritated just by being exposed to the actual air and not layered in Yuckies, isn't it?

Ok, this Yuckie post is making me feel yuckie.

Goodnight to you,

Saturday, August 1, 2009


Quick post tonight because I'm tired and just got home from a CFF fundraiser, which was fun but loud (dance party).

Update regarding morning exercise. So far, going well. Today not as good as yesterday, in that I had to stop half way through for some serious mucus production. ICK. Sorry. Did I forget to mention that you shouldn't read anything about CF if you aren't comfortable with the word MUCUS? ICK. Thus, I say, YUCKIE.


"Update regarding morning exercise. So far, going well. Today not as good as yesterday, in that I had to stop half way through for some serious Yuckie."

Yuckies lasted about ten minutes but boy that stuff can move. So that's good. I finished off at 20 minutes walking, only 45 seconds running which had marginal success, and at 4L of oxygen. I did not experience the same hunger which I did yesterday, but all the same nausea. :(

Tomorrow, I will go to 25 minutes walking, stick to 45 seconds running, increase to 4.5L of O2 and hope that the Yuckies can wait til the end of the workout. And yes, I do some Yuckie clearance before I work out.

Goodnight y'all.
May the Yuckies stay away from you.