Friday, July 31, 2009

CF Disability Disclosure Letter- the formal one


Some of my bloggies emailed and said, (paraphrasing them all together in a lump), "Hey, CG, that was a great email you sent to your long-time colleague about your recent health changes. How do you word it when you write a letter or email at a new job?"

These inquiries made me think that I could help some bloggies out and just post my version of a a formal disclosure letter. This is the letter that I give to my new bosses, AFTER I have started work, but BEFORE anything could come up related to my health that could require an accommodation.

This window of time is smaller than most people assume that it is. Any person, of course, could find himself in a health-related emergency shortly after starting a new job. A person with CF, however, is at a much higher risk of facing a health-related emergency or a need for accommodation shortly after starting a new job. You don't want to wake up two weeks into a new job (a stressful time, might I add) and realize you have spiked a fever and BOOM! You're out for just 4 or 5 days, at home, sick, and worrying about giving a bad impression to boot! No need for it.

It is better to communicate early on in the work relationship, so that minor accommodations can be made to protect your health without seeming like a nagging new employee. Major changes in your physical health can be discussed if they arise, without the added stress of having the initial conversations about CF in general.

In any event, it is always important to protect your employment rights in disclosing your health information. You should allow yourself time to craft a letter carefully and honestly, and consult with resources on disability and labor law, to guide your sweet verbage.

Here is my letter. Feel free to use any wording from it in your own private letters. (But don't repost or publish). Thanks!

************************************************************************************

CYSTIC GAL

111 Cystic Street, Fibrosis, STATE 12345-1234

123.456.7891 (Cell) / CysticGal@gmail.com

Aug. 1, 2009

Place That Hired You, Awesome Institution
Awesome Road.
City, State 12345-2345

ATTN: HR Personnel; Health-Related Personnel; your direct supervisor; any person you want to tell.

Dear Colleagues:


I am writing to inform you of a medical condition I have that may affect my employment. I have Cystic Fibrosis, a genetic disease affecting primarily the respiratory and digestive systems. Having dealt with Cystic Fibrosis since birth, informing school teachers, college professors, employers and colleagues, I am very comfortable talking about it and its affect on my life and employment. I have also found it helpful to provide a little background information on Cystic Fibrosis in order to contextualize our conversation:


What Is Cystic Fibrosis?

*from cff.org, The Cystic Fibrosis Foundation. (2006)


Cystic fibrosis (CF) is a genetic disease affecting approximately 30,000 children and adults in the U.S. A defective gene causes stress to primarily the respiratory and digestive systems of the body. People with CF have a variety of symptoms including: persistent coughing, wheezing or shortness of breath; and an excessive appetite but poor weight gain. Symptoms vary from person to person due, in part, to the more than 1,000 mutations of the CF gene. The treatment of CF depends upon the stage of the disease and the organs involved. Adults, however, may experience additional health challenges including CF-related diabetes. [. . . ]


It is important to note that though the symptoms of CF present as respiratory illness, no aspect of CF is contagious.

Cystic Fibrosis is recognized by the Americans with Disabilities Act and I may, at a future date, request accommodations which would allow me to better complete the vital functions of my job. However, at this time I do not need accommodations in my employment. If you have any concerns, please do not hesitate to contact me directly. There are a myriad of healthful resources online, one in particular titled [GIVE THEM A LINK TO MORE USEFUL INFORMATION THAT PERTAINS TO YOUR JOB, IF AVAILABLE]. This online document provides some helpful information specific to our workplace.

For the protection of my own privacy, I ask that you not share this information with other employees without speaking to me. Thank you!


Sincerely,


Cystic Gal

[Sometimes I include a statement here asking them not to include health-related records in my HR file, and not to create electronic copies of this disclosure. This is up to you. I don't want my CF disclosure to be inadvertently emailed or faxed to a new potential employer ten years from now, when they check references. This would also depend on your line of work and industry.]

*************************************************************************************


I hope this helps! Let me know if you have any questions.


In other news! My morning routine went great. I walked at 2.8mph for 20 mins and ran for 30 seconds with the O2 cannula in my mouth. Highly successful! More minutes, more running, tomorrow a.m. On eating, I did not successfully eat breakfast. I was nauseous and tried to eat and it did not work out (that's all I'll say). BUT I was wicked hungry about 9:00 AM which is earlier than I usually eat, so my overall calorie intake today had to be higher. I ate earlier and thus, more often. I don't stop after I start :)




Thursday, July 30, 2009

Catchup, People! And new exercise idea

I've been told lately that there are too many long posts up and that people want a sec to catch up. Okay- so here you have it tonight!!

A few brief updates:

There will actually be less narrative posts, I think, in the next two weeks because I start a huge project on Monday (yay) and anticipate being busy at night getting ready for the morning. Due to my new project over the next two weeks . . .

I also ! am bravely ! starting !! a morning !!! workout !!!! routine tomorrow !!!!! I'm going to try to work out in the morning, which I only succeeded in doing at Pulmonary Rehab. But I DID do it. But it sucked. But I DID do it. I think it is ultimately better for my lungs to go through that process, though it is not more gentle on them or on my diaphragm, because I have pretty bad morning cough. BUT it makes the rest of the day better. I don't know.

I'm going to try it though... I'll report back. In an ideal world, I could exercise at 5PM or 6PM when I'm home before dinner, feel like it, I am intellectually drained from the day but not physically tired, and my lungs would remain clear a full 24 hours until the next workout. Alas, the world is not ideal.

The downsides (for me) to a morning workout are: I am not that coherent in the morning, have to lay out workout shoes, socks on the treadmill; neurotic fear or sleeping through it that interrupts sleep; actual sleeping through it; general loss of sleep associated with waking up earlier; cats do not seem in favor of it; I cough harder but get less up. Real morning airway clearance still happens in the shower best (for me) with the steam; my diaphragm/abdomen gets sore more often and more easily from this rougher coughing; morning workouts rule out breakfast by increasing my morning nausea; I don't get as clear of an idea of my O2 needs because my O2 is significantly worse upon waking, gets better when up and about.

Upsides: Lungs do clear better during shower; lungs are clearer for the start of the work day; Workout is done so I feel like a superwoman all day thinking, "I worked out at 5:30, what did YOU do today?!"; general bragging rights; its cooler out in the morning; if I get in the rhythm I can commit to it 100% No schedule conflicts with the ass-crack of morning.

Tell me this, bloggy readers, when do you exercise?
***THIS JUST IN! Casey wants to know too!!!*** Click Here

CG

Wednesday, July 29, 2009

Metaphor Du Jour, a note to a colleague explaining my health

p.s. I found this image just googling "metaphor car lungs images"-weird huh?

Note to Readers: I'm a post ahead of myself so this is the Wednesday night post.
It went up, unedited, last night on accident :)

Tonight, I wrote this to my longtime colleague regarding our current project and her worries that my work is getting too intense, as hers is getting less intense while she deals with family health issues that are pressing. I share it with you because:

a) it contains the metaphor du jour

b) it is a good sample, i think, of how to articulate quickly why I want to work as much as I can work right now

c) it's a good reminder that within whatever a CFer deals with, s/he must also remember that personal challenges surround us. We can do for others what we need done for us.

d) It shows that in a short time, one can become comfortable with something that once seemed insurmountable, as I have become comfortable wearing oxygen in front of my students when I need to.

Here goes . . .

"L--,thanks for this message and we'll talk (hopefully) more tomorrow. On my health issues- the only thing I'm really having trouble with is sustained cardio like walks, when I have to wear my oxygen, and mornings are sort of rough because of the oxygen issues. Other than that, I am really in good health and spirits and being active is the best thing for me (and my spiritual health/mind) right now. So I love that I'm able to help you with this project, seriously. Also, now that I have my Handicapped parking, my entire day has gotten a lot easier.

[I wish I had applied for it when my sister told me to, a year ago!]

I think of my lungs like an old car. They can go on lots of short drives but when they go on a road trip, they are in trouble until they make it to the shop. The oxygen is the shop :)

I am fine with regular activities and even being very active in class and rehearsal, but long bouts of formal exercise are what wear me out, and I need to use the oxygen to keep from feeling very fatigued. With our teens, in particular, I would not hesitate to wear it in rehearsal if I need it. They really don't care. Some of the kids we will have, have already seen it at other rehearsals around town. I'll wear it if I need it, and when I wear it, I can do whatever I want. It's really a great freedom for me.

I'm more used to this now because it has been this way since the winter, and even worse since about May. I don't really know what my year ahead holds, but I could be in this sort of state for a few years even, so I want to make sure that I'm being as active as I can not only because it's the best for me, but it is also the best for my lungs. :)

Let's talk more and just know that the [artistic institution I work for] family will rise up to meet you if an emergency arises or if you are behind in the planning. We are a teaching artist ensemble! We should practice what we preach. :) I am honored to do whatever I can, that you need. Seriously."

Feel free to use these words (or your edited ones) in an email to your colleagues when they say,

"I feel like you're doing too much."

and you read or hear

"Stop doing what you love."

Because I know, that can be a hard conversation to enter.

Goodnight!
CG

Tuesday, July 28, 2009

My CF Firsts

Another bloggy did this list, so I thought I'd take a crack at it. Shout out to Casey's blog. Check him out!

Since I first published this, other CFers have been posting their firsts. Here is one mom's account of her baby girl's CF firsts. It really shows how things have changed since Cystic Lady was born in 1976, and I in 1980: A Day In the Life of a CF Mom;

I have also updated my firsts to include their firsts to we can all compare :)

Here are some of my CF "firsts." I based my list on my own knowledge and memory, though Casey, I suspect, had to ask his parents for the info. (Uh...my parents still don't know about my blog). I will also share any memories I have.

My First . . .

Breath- 1980

Pancreatic Enzymes- As early as they could put 'em in my formula, I think.

Diagnosis- 6 months old. Earliest they could do it in 1980, I think.

Daily Vitamin- Age 3. Flintstones Complete.

Oral Antibiotic- Age 6 or younger.

First Asthma attack- 7 years old.

Halloween Costume in hospital - 8 Years Old. I was a red M&M. I remember the face of the nurse who helped me make it. It was a project for us.

CF Doctor and clinic- 6 mos. Dr. Gibson at Rush Presbyterian St. Luke's Medical Center, Chicago. He was the best doc I ever had.

Formal Exercise other than sports: Age 4. My mom made me and Cystic Lady (then more of a Cystic Kid) do this Mickey Mouse Club Exercise. It was lame. Following that (Age 8ish), she made us do this "Get In Shape, Girl" exercise for kids. It was similarly lame.

PFT- Not sure. I do know that Dr. Gibson said that according to my first try at a PFT, I was already dead. I have never been good at them.

Nebulizer treatment- Age 7 or 8?

Dose of Pulmozyme- About 13 years old.

CF Sibling: At birth, came to realize I have a 4 year old sister, Cystic Lady.

Non-CF Sibling: At birth, came to realize I have a 18 month old brother, Cystic Sibling.

Hospital Stay "Clean out": Age 8, where I really began to be afraid of hospitals.

Bad memories:
being forced, screaming and in full tantrum (and I could create some doozies well into my pre-adolescence), into Chest PT with a machine. I had never seen a machine before. It was very loud. The PT woman was mean and hurt my wrist and I still sorta have a hatred for her; Remember being alone a lot and watching L.A. Law on tv; My sister having a separate room from me, as they just started to separate CF patients' rooms and/or they were afraid we would fight, me 8, she 12; my room was always dark; My IV came out in the middle of the night and soaked my bed with liquid. I had to get a new one in the middle of the night. Even then, I knew this was ridiculous; Nurse lady took me outside to a park and we played on a swing. Even then, I knew that this was supposed to be a kid-like experience for me in the middle of a bunch of adult-like experiences. I was not amused but put on a "wow, thanks," expression; Meeting two teenagers both w/ CF but I think they were unrelated. They had these horrible IVs in their arms that were some sort of long term IV that you could see run up the arm along with the vein and a sort of huge tagaderm over the whole thing. Their room looked like a dorm room and I thought, they must live here. They had posters on the wall and everything. I worried my sister would move in with these CF teenagers in their CF teen room; The word clean-out and me thinking it meant they were gonna go in me and get something out of me; Going back to third grade and doing show and tell with a stuffed animal mouse I got, and saying I got it in the hospital, then not wanting to answer when someone asked me why I was there, my third grade teacher, who I actually adore, then scolding me, "Why did you bring it up, then?"

Good memories: Making M&M halloween costume with a nurse. She brought the poster board and we made the straps out of ties from a hospital gown; Skating on my IV pole down the hallway; Learning to play pool in the "lounge;" Watching adult tv like L.A. Law and Thirtysomething all day and night; meeting my black roomate who had something really bad wrong with her, and no visitors. We got along great and my 8 year old brain thought she looked just like Tracy Chapman because they had the same hair; Someone gave me really adult nice-smelling shampoo to use; Visiting the nurses and eating candy from them; putting hospital-issue deoderant on the inside of my wrist to my elbow because that is where I thought my "underarm" was, then smelling powder fresh all day; Getting gifts like balloons and stuffed animals.

[...]

Dose of Tobi- I think, 12 years old. Prior to that, inhaled tobramycin mixed with saline and a needle, the old fashioned way.

Read "Alex: The Life of a Child:" Age 8.

Started thinking about mortality: Age 8.

Started realizing I'm gonna live through this chapter and then the next one too: Age 20

First loss to transplant: Age 13, my Godbrother. He was 19.

First time I really remember FEELING sick: Age 9 or 10 when my Gramma was visiting.

First hemoptysis: Age 22, at work filing papers: Gurgle Gurgle.

First major bleed (later diagnosed as Pulmonary Endometriosis): Age 24

First home IVs: Age 20

First home IVs with no hospital time: Age 29

First time I freaked out about my fertility: Age 24

First time as public advocate for CF Adult issues: Age 12. Ha! Youngest member of the Chicago "Chosen Few" group, who had to change their name after we realized, it wasn't "a few" people that were making it to adulthood with CF.

First time a relationship changed dramatically during/immediately following big changes in my health: Age 8.

First time without health coverage: Age 21, following graduation from college and without a job (Also, my last time.)

First PICC line: Age 20

I could go on!! Maybe I'll add more tomorrow.

What are your CF firsts?
CG

Monday, July 27, 2009

Sunday, July 26, 2009

"A Good Day Ain't Got No Rain"



Recently, I was asked to consider this question and to think about other responses from my CF community. Here is what I have to offer, so far. (Originally commented on Ronnie's blog).

If you had it to change, would you prefer to have been born without CF?

Wow. What a complicated issue and complicated question. I remember getting into a fight with a family member (or two) because I was being asked this question when I was a teen, and my response was (frankly) "you might as well ask me would I rather have been born a man?" - I don't know, because I've never lived my life as a man, and I would be an entirely different person, so I wouldn't really be ME, so the question itself doesn't make sense.

She thought I was being flip with her because she expected (I interpreted) to hear either "YES! I would love to be born without CF!" or "NO, it is my gift from God." I live somewhere in the middle. I know that I am "who I Yam," as Popeye would say, because of CF. It changed my family structure, my friendships, and my entire way of living from the get-go. But there are days, and years even, when I am so aware of some specific thing that my health is holding me back from, or that I feel is robbed from me, that I can't help but think, wow. If I didn't have CF, I could do that. I could ____.

When posed with this question over the years, I have found (in my limited, one-person-research), that people really want you to give a loving, peaceful kumbaya response. If you are unable or unwilling to give this response, they get all upset. They either try to talk you into a better response with things like "But you're feeling a little bit better, right?" (though you might be getting worse.) Or, "Well, you're handling it well" (though you may be at your wits' end). Even worse, if you push forward with a response of "Well, this week sucks and I'm having a hard time," the conversation can easily turn into them trying to talk you out of your feelings, or belittling your feelings.

We live in a society where you are supposed to keep negative feelings to yourself.

Or save them for therapy.

So we're all in therapy.

Good job, us.

I was born with a very weak "editor" in my brain. I have developed a better sense of how to slow the thoughts between my brain and my mouth before they all come pouring out, but it's still a struggle. You ask me how I am, I'm gonna tell you. You ask me if you look fat in that, I'm gonna say yes or no. This makes me a great shopper and an honest person. Apparently, it also makes me a crazy bitch.

Meeting the expectations of others is not something I take well. I don't like the pressure. I don't like the assumption that other people's expectations are better than my own. I don't deal well with meeting other people's expectations just because they exist. I am an artist. Actors sit in a room and talk about their childhood bullshit all the time and call it "subtext." I don't think its weird to say "I feel bad today," but I realize, other people want you to say "I am fine" if they ask "How are you?"

I get it, okay? I AM FINE.

Reading a book by Michael J. Fox about his struggle with Parkinsons, he wrote (paraphrasing) that he struggled with this issue himself, that people all want to hear good news from you. He wrote (once again, I am paraphrasing), that he made peace with his anger over the pressure he felt to report the good news when he realized that people aren't really asking about HIM, they are asking him to reflect on THEMSELVES. They are vocally asking, "How are YOU doing?" but they are spiritually asking, "How will I do when I face an illness?" This realization freed him to just say "I'm doing great! One day at a time! Things are progressing! I have the best care!" and not feel guilty over the white lies, when they existed, or the shallow conversations of his large health issues.

When my friends ask me, I always bring up that Simon and Garfunkle song, "Slip Slidin' Away." There is a lyric,

A good day ain't got no rain
A bad day is when I lie in the bed
And I think of things that might have been

That is how I feel. It doesn't take much to make me feel happy, to see the wonder in my disease and to see the gifts it has given me and the gifts it has allowed me to give to others, especially children.

But it doesn't take much to make me feel robbed and abandoned in my illness, either.

I am glad this discussion is happening, and I love all my new bloggy friends. Those who didn't read Ronnie's blog, because I know that a lot of my readers are just HIS readers :), tell me what you think of this question, and what your responses have been to others, in the past.

Most sincerely,

Cystic Gal


Saturday, July 25, 2009

Boobs vs. Port: Smackdown. A Call for Info!


I need info from other Cystic gals! I am considering getting a port (or port-a-cath, which is an entry way for IV meds that stays in a person, long term), but love my chest the way it is. Meaning, I am a boob girl. I am fine to admit it, my chest is my best asset. I wear v-neck shirts and necklaces and love love love my body from waist to shoulders. I am not interested in fucking it up. I like it. Not because guys like it (I don't have big boobs even,), I just like it for me. Always have. It's a staple of my fashion sense and my sense of femininity.

Boobs and Port. Give me the info!

Does it feel weird if a man hugs you with a port? Can you feel it pressing? Does it hurt?

Can a man feel it with his hands? (When it's not being used for IV meds, I mean)

Does it heal closed between treatments? Like if you had 3 months with no IVs, would it heal up?

When you are doing IVs, how much "geography" of your chest does it take up? Is it like a PICC in your chest? Are you destined to sweatshirts and woolie sweaters while on IVs?

GIVE IT TO ME STRAIGHT, GALS!!

Love, CG

Friday, July 24, 2009

No Full Moon? Big Disappoinment. A non-CF post just to update.

I cannot believe there was not a full moon this week.

Tonight's blog will be short. In fact, it is 12: 20 AM so I really missed Friday's deadline. Today, I stayed home sick to do my meds and airway clearance (in which I made great strides, and if your doc ever wants to show your CT, watch it. It's a great motivator for the hows/whens/how muchs of your airway clearance!).

Whilst I was staying home, a man tried to break into my house, apparently to beat up another man. A "black man!" which made him yell that at me through the window, which made me think he was a) crazy b) a rapist for wanting to "hang up the phone! There's a black man!!!", c) scary scary scary. d) a racist. Did I mention that he had no shirt on and some crazy tattoos?

I had quiet a day after that. Nuff said. Where IS Kyra Sedgwick when you need her? Sargeant Provenza would have been all over this.

Thank god for valium, naps, friends and sleep.

T-Money and J-Teach came over. They are the best of friends, goodnight.

Thursday, July 23, 2009

Know When To Hold 'Em

Okay. So the other day I had the idea that I could write my book about CF and actually use the lyrics to the song "The Gambler" as the names of the chapters. This was the day that I wrote "Know When To Walk (away), Know When to . . . Walk."

So anyway, that's my silly idea of the day. That and the long joking conversation I had with Cystic Lady, my sister, about starting a family with another bloggy CFer. She and I were joking about marrying another CFer (which others have done, I knew a couple of couples growing up in UNDISCLOSED CITY, USA), and having babies. We were imagining the headlines, and articles:

Couple with CF Takes Advocacy To New Level: "We want a whole CF family!" says Cystic Gal. Ms. Gal married Cystic Homie at the age of 29, when they met and fell in love over blog.

They've Gone Too Far! A couple with Cystic Fibrosis says they plan to have 19 children and star in a reality show called "19 CFers and coughing," to increase awareness of the disease. Though every single one of the babies will be artificially conceived, due to the couples inherent fertility issues, the Fibrosises say they'r ready for the challenge! "We've lived through worse!" says Mister Fibrosis.

(the rest of the jokes got kinda shady so I won't post them here.)

Anyway, y'all that have been reading my Exercise Tracker might be wondering how I'm feeling. Just the same as yesterday. Having a bad time over here on Anywhere Street, USA. I'm at a point with my O2 saturation that is really frustrating, that has happened to me before. My resting O2 is really low without any supplemental O2, but then I wear just .5 or 1L, and it's great! 93! Conversely, I can have it cranked up to 4L and be doing some minor exertion, and be struggling to maintain a decent SAT. Cystic Lady talked me through some possibilities for helping with the oxygen conserver that I use during the day:

DID YOU KNOW YOU CAN PUT THE CANULA IN YOUR MOUTH? My recent tweeting investigation tells me that all the CFers with O2 knew this! I did NOT know. I will try it tomorrow!

DID YOU KNOW THAT ANEMIA CAN MAKE YOUR SATs DROP? Every month I go through this and my sister has to remind me to take some iron!

DID YOU KNOW THAT BEING IN A BAD MOOD ONE NIGHT IS A SURE FIRE WAY TO BE IN A BETTER MOOD THE NEXT? Oh wait, maybe that's just me.

Goodnight to y'all and a shout-out to all my homies in the lockdown ;) HA! I've always wanted to say that.

That, and "Pour one out for the homies." Though in this case, I'd have to pour out an Ensure while I said it.

Ha.

Okay, that's enough.

Nightie Night,
CG

Wednesday, July 22, 2009

There Are Nights

Disclaimer: I haven't really written any sad posts. Which is ironic, because I'm usually a sad sort of writer. I like sad topics and write sad lines and my characters are sad and boohoo. But this is my only sad post here so far. So, well, here it is.

And I didn't write it today, so don't go tweeting or emailing all crazy. I decided to post it on a different day than I wrote it so that it wouldn't be an overdramatic cry for help. Just a thought for out there- the bloggy world.

With Love, CG


There Are Nights

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

Tuesday, July 21, 2009

AH! 1000th READER TONIGHT!!


NewsFlash!

1,000th READER!!
Yay oh Yay oh Super Yay!


It's DENVER, CO! Who are you?! Tell us your name!! Leave a comment or send me an email!! I want to know the name of my 1,000th Reader!! Welcome!!! Enjoy the site!

ANOTHER >#1,000 NEW READER?!
Click on the "Cystic Gal" banner at the top to get readin'!
Or read through the archive on the left column!
Or just read the left column!
Lots to do on CG!

THANKS FOR READING!!

Monday, July 20, 2009

Know When To Walk (away), Know When To . . . Walk.

NEWSFLASH!
CG is now on Twitter! Follow me with username CysticGal ! I can't wait to tweet with you.

I realized my dates were wrong in the Exercise Tracker! New Exercise Tracker coming! I've been at it every day except 2- both publicized honestly :) Thanks for all your support!

On to the regular post . . .

************

Know When to Walk (away), Know When to . . . Walk


Ok Readers. Here it is. I'm gonna give it to you straight. After 30 days of research, both bold and careful, easy and hard- here is the hard truth.

I am not a runner.

I am no "RunSickboyRun." I'm never gonna be one of those peeps who runs a marathon and "oh my God she has Cystic Fibrosis!!" is said on the evening news. It's not in the cards. Not this year.

For the past thirty days, I've been conducting secret research, trying different methods to try to incorporate running into my workout. I was a Cystic Gal with a dream. I tried doing one minute of running every ten minutes of my work out. Nope. I tried doing thirty seconds. Nope. I tried FIFTEEN FRIGGIN SECONDS. Nope. My heartrate is not happy with me running, and neither is my O2 regardless of how high it is set. My lungs and heart are not ready to run.

Sigh.

I'll be okay.

To bring me out of my doldrums, I wrote myself a little diddy. It is sung to the tune of "The Ants Go Marching In." (the kids song, not the DMB song).

Gal Goes Walking In
By Cystic Gal

2.8-3.5 for me, hurrah. hurrah.
2.8 is the speed to beat, hurrah, hurrah.
3.5 is the max for me, hurrah, hurrah.
I'm the best walker, you see- HURRAH! HURRAH!

My point: I am learning that it is not about matching someone else's workout even if that's your romantic dream. I have much lower FEV's and O2 SATs than most of my bloggies. I canNOT compare myself to them fairly. I might as well compare myself to Lance Armstrong. That would be pointless.

I must work to the highest part of my target heartrate, and keep my 02 between 88 and 95, and sustain for >30minutes! That is all!

I worked hard today! HURRAH!!!

Goodnight, bp

Sunday, July 19, 2009

REASON #11: The Ultimate Rationalization

This is a follow-up to my original post, The Top Ten Reasons Not to Exercise (with CF). Please check it out if you haven't already, so that you'll understand the nature of this post. Like the original Top Ten Reasons, it will be in two parts. A) The narrative reason that a CFer thinks/says when sharing why they simply cannot exercise. B) Why their narrative featured in Part A is totally craptacular.

PART A: The Reason
11. The Ultimate Rationalization: (A) I just want to live my life . . . or some other very honest, yet very dramatic statement. These might include: (B) I'm so tired of all of this; (C) People without CF don't have to work out on their weekends/holidays/birthday; (D) It doesn't make a difference anyway, I'm going to die from this disease whether I exercise right now or not.

WARNING! (Part E) When pushed, the CFer may raise the stakes in conversation and exhibit hostile behavior, muttering phrases such as: When you have 40% lung capacity you can tell me what I need to do; If you ask me whether or not I worked out again, I'm going to sell that bleeping treadmill on craigslist tomorrow; or my personal favorite: Ahh! Leave me the f alone . . . What are we doing for dinner?

PART B: Why that reason is total crap.
11. Okay, before I address each point - Get the fuck over yourself for a second. Or better yet, 45 minutes. Get over yourself for 45 minutes and work out this little mental breakdown while you're on the treadmill.

Now, Addressing Reason as Quoted A) Yes, you want to live your life. You deserve to live a healthy, balanced life. If you don't have 3o minutes to spare today, then clearly your life is not very balanced. Because honey, you deserve 30 minutes of working out, and that time is all for you. Be late to the party, or go in late to work. Stay up late -it's fun. Take a sick day if you have to. Get some time on the schedule for you you you and get that ass on the treadmill while you're at it.

B) If you are feeling emotionally, mentally or physically fatigued there is no excuse for avoiding exercise. It will help you with all of these problems. It's a proven fact. Don't make me get all citationy again. Especially if your lungs feel all closed up and swampy, you need to get some exercise to breath clearer, then think clearer, then feel a little better.

C) If we are going to list all of the things that people without CF don't have to do, we could be here all day. But, we should then list every disease and personal problem you don't have, too, and make a list of all the shit you don't deal with that others do. Life is not fair. Even a seven year old knows that. Go tell someone in a wheelchair that you're so upset about walking on the treadmill for 30 minutes. See what that person has to tell you, if you're interested in fairness.

D) Every single day you make about a hundred decisions that actively affect the status of your body tomorrow. You've known that since you were only a little child. So don't get all high and mighty about this issue like it's a realization you just had over a cup of tea and Oprah. You obviously want to live in as health of a body as you can, for as long as you can (and if not, that's okay too, for a little while, but you should go talk to someone about it, seriously). If you want to live in the healthiest version of you, you gotta exercise. And you're just being dramatic so shut the f up. PS: Don't make your loved ones cry by saying that crap out loud. It is mean.

In regards to Part E) WARNING: There is no way out of these conversations for the non CFer. No, parents, spouses, lovers and friends. This is the CF equivalent of "Do I look fat in this?" The conversation is only gonna get worse.

For the CFer him/herself: When faced with the horrible Reason #11, Part E: You need to do a few things: 1) Calm down by whatever means necessary. Hot bath. Hot toddie. Whatever. 2) You need to eat something that you really really like to eat. 3) You need to spend some time with yourself 4) You need to exercise and go to bed. If you really really can't do the exercise part, you have to do all the other 3 steps, and go to bed early. Sleep well, and wake up in a better place tomorrow.

PS. You should only experience Reason #11 Part E one or two times per year. So if you're riding the Ultimate Rationalization Fast Train on a weekly basis, it's time to get some help with finding a better way to cope. Seriously. Nothing a little anti-depressant, therapy, or a trip to see Mom can't fix. Whatever works for you.

With Love, CG

Saturday, July 18, 2009

Putting the "Gal" in Cystic Gal



Today is the first day of my very horrible terrible mind-numbing fist-pounding-on-my-desk crampy did-I-already-type-the-word-terrible period. I have to go back to the couch. Some other day I'll rant about this and its Cystic connections and my diagnosis with Pulmonary Endometriosis 4 years ago.

That's all I'm going to say about that for now.

I have to go catch my uterus. It's falling out.

CG

Friday, July 17, 2009

For Curious Friday Night Readers

A special shout out to Ronnie, and thanks to everyone who read yesterday's post and commented or emailed me.

I plan to add a special REASON #11 on the TOP TEN REASONS NOT TO EXERCISE WITH CF, and this will be called:

REASON #11: The Ultimate Rationalization: I just want to live my life.

And don't you worry, I will address it in the same (hopefully) quippy, shut-the-f-up-already style with which I addressed the other ten reasons :)

I DID exercise today, so I'm back on Day 2. I did a wicked good workout today even though it is HOT out, and now I am going out! I plan to post later but I didn't want to leave ya hanging.

Have Some Fun Tonight, whatever you do!

And Ronnie, Friday night in the big house are my favorite. So quiet!! A little Peace and Quiet after a storm of getting settled in your room and for your "Runaway Truck Ramp."

Love, CG

Thursday, July 16, 2009

"And on the seventh day . . . "


"And on the seventh day . . ."

Cystic Gal took a nap.

It was just the day before yesterday that I wrote The Vow of the Cardio, and only yesterday that I revised it. Yesterday. The seventh day that never was. My entire reason for making The Vow of the Cardio was to break my bad habit of taking a day off from formal exercise. I do this every week. It is like a mental block or a secret desire to complain the next day or something. It is ridiculous. It is inexcusable. Yesterday, I DID NOT WORK OUT.

Yesterday: I sat in the sun for 1 hour, 15 minutes while reading; I took at 2 hour long nap; I fooled around with my blog here and there and all day long for certainly an hour or so total; I talked on the phone a lot; I made a contract for a gig coming up; I started the process on getting another contract for my new colleague; I had my friend T-Money over and even actively thought, "it is a perfect amount of time to work out, while she drives over!" BUT DID I? OH NO!

And my lungs were double mad at me for this decision. They were wheezy and making a crinkly noise by the time I went to bed despite my airway clearance. They were an f-in' nightmare this morning. They were glarpy and glorpy during rehearsal. They gave me shit during airway clearance today. They were pissed, and I could not blame them. My lungs can be real bitches when they've been ignored and lied to.

Of course, there is another side to this. Looking over my list of the Top Ten Reasons Not To Exercise With CF, I left one off, which I will now add. My rationalization yesterday is that my life comes first. Meaning, my social-spiritual-emotional-artistic LIFE. My LIFE comes before my health. I stay healthy so that I can live my Life. I don't live my Life to prove that I can stay healthy. This, I know, is something that not all CFers, CF parents, or CF caregivers (medical or non), agree with. They would say, "You have to stay healthy so that you can live your life," which on the surface, sounds true. Well, it is true. You have to physically stay alive so that you can continue any kind of a living breathing life whatsoever. However, my life with CF is about choices, grande sweeping conceptual ones like "My Life comes before my Health," and smaller ones like "I really want to spend time laughing with my friend tonight. I'm really enjoying this. I don't want her to go home yet," or the opposite, "I'm not going to that birthday party. I simply cannot. I have to stay home and take care of myself tonight."

The way that I take care of myself on one day may mean to stay up late hysterically laughing with my girl friend talking about boys (and yes, I'm older than 15), and some other day it may mean skipping out on an event I was really looking forward to, in order to work out and do meds and really push the airway clearance.

I will never be the CF patient who chooses only the second option. I will always live my Life first.

This got me thinking, how did I get here? Why do I feel so strongly about the Life element in my . . . well, life? Here is the first chapter of Cystic Gal: the future book or something.

Until my mid-teens I was under the care of physician Dr. Lewis E. Gibson and his nurse, M-huggy. His name is probably the only real doctor's name that I'll use on this blog, and I use it now because he passed away in 2008 and I know inexplicably that I will only say complimentary things about him. He was a pioneer in CF medicine for a lot of reasons, including his invention of the sweat test used to diagnose CF, and his study of many of the common practices in CF care including the use of mist tents on patients in the 1970s and prior years. During the time that he practiced medicine, he saw the expected age of mortality for CF patient go from younger than ten years old, to older than thirty. CF went from a "childhood disease" to a "genetic disease affecting 30,000 adults and children nationwide." I think of his mind as an extraordinary timeline filled with data, pictures of patients, difficult conversations with patients, patient conversations, wellness, illness, death and Life in CF with its successes, failures, and choices made in CF care.

A side note: Dr. Gibson often told the same stories over and over again. You will know a patient of Dr. Gibson's if you can get his account of where "the shot heard 'round the world" was fired from. He told me on more than one occasion that his motivation for studying the long-term use of mist tents in CF was not really motivated by the moisture levels in the lungs and bacteria growth and all that, but that, "it just didn't seem right anyhow," and "practices like that can do a lot of damage to the patient's sense of normalcy." He was interested in getting rid of the mist tents because they were terrifying to look at and made the kids feel like they were dieing. Oh, and they were actually helping grow the Yukkies. That too. Dr. Gibson cared about how the science served the patient, not just how the patient reacted to the "best science."

When Dr. Gibson retired, he wrote a poignant yet professional, emotional yet instructive letter to families and patients under his care. Though I don't know for sure (and I'm sure somebody could look it up), I doubt his practice had a great attrition of patients from year to year. He cared for me for 15 years from the day he met me at 6 months old and wrote, "Baby [CG] in good spirits reporting her chief complaint to be recent diagnosis of Cystic Fibrosis," until his retirement party in 1995. He cared for my sister for approximately 18 years until she left for college. He cared for my God brother until his lung transplant in 1994. My family and others made extraordinary sacrifices to remain under his direct care.

In his letter to families, after approximately fifty years of crafting, evaluating and revising CF care in his centers and for others, Dr. Gibson wrote a letter that reminded his patients to put their Lives, their families, their relationships, their happiness first. I am paraphrasing now, but will revise later - he said that care should never become so costly, so time-consuming, or so personally overwhelming to patients or families, that patients are not able to enjoy life.

I will always put my Life first because I want to enjoy Life.
My Life keeps me healthy.

(which is not, truly, the reason that I did not exercise yesterday. I did not exercise yesterday because I was being a bloggy, tanning, phone chatting brat. But I think this line of thought that I began here, is more valuable than that particular Epiphany.)

Goodnight. From Day One,
CG

Wednesday, July 15, 2009

Dear Friend Who Doesn't Call For Two Months When I Get Sick Then Wants to Reconnect Over Facebook,

Good Luck With That.

Love, CG

Newsflash: Vow; Hawaii; Med Community Readers!

NEWSFLASH!

CG revised "The Vow of the Cardio" - below! Now STREAMLINED for your reading ease.

CG welcomes Readers in Hawaii!! You've been with us for awhile! How did I miss you?

CG sees surge in medical community readership. Hello to medical professionals in Massachusetts, South Carolina, Texas and California!!

CG revised the CG Goals!

Tuesday, July 14, 2009

The Vow of the Cardio- REVISED


The Vow of the Cardio.
It is a promise between me and my lungs.

1. I will exercise daily so that my lungs can reach their capacity and serve me better.

2. I will exercise for a minimum of 30 sustained minutes every single day no matter what.

3. Only my own doctor himself can tell me not to exercise.

4. I will keep oxygen for for a variety of types of exercise by calling the 02 company ahead.

5. I will not "replace" daily cardio/aerobic exercise with yoga, sex, or weight lifting.

6. I will monitor my O2 SAT and heart rate diligently and work to my full potential.

7. I will not get mad at myself or my Lungs if they have a bad day, week, month, or year.


8. I will set goals for me and my Lungs, and when we complete them, I will reward us.

9. I will continue exercising my Lungs daily during a health setback.

10. I will be honest with my Readers about my adherence to The Vow of the Cardio.

Make you own ten-point "Vow of the Cardio" today! Don't make YOUR Lungs say, "What have you done for ME lately?"

In an upcoming post, "The Lung Agreements," or what your lungs promise to do for you.

-CG

The Vow of the Cardio-ORIGINAL


The Vow of the Cardio.

NOTE: This version of the Vow will remain published, but revisions will be posted here, as I move forward with my progress and thoughts on exercise!

You, too, may take this vow. Or you may make your own. It is a promise between you and your lungs.

1. I vow to provide my Lungs with daily exercise so that they can serve me to the best of their ability.

2. I vow to exercise my Lungs for a non-negotiable minimum of 30 sustained minutes every day including during religious holidays, family events, unforeseen circumstances, and regardless of the time of day, the status of my Tummy, and even when I am very sick unless my doctor actually tells me directly that I may not exercise.

3. I promise my Lungs that their oxygen needs will be met. To ensure that my Lungs will believe me, I will call my home health company ahead of time to prepare for travel, holidays, and changes to my routine. I will program the home health 02 company's name into my cell and set reminders to call them for supplies.

4. I will not fool my Lungs that other forms of non-sustained exercise can take the place of my Cardio/aerobic time. I will use other forms of exercise to compliment my aerobic activity, not replace it.

5. I will monitor my Lungs' ability to use O2, and the status of their dearest friend, the Heart, by checking my O2 SAT and pulse. I will work to my full potential during my workouts by steadily increasing the difficulty as I track my improvements. I will expect my Lungs to work to their full potential, but I will not get mad at them if they have a bad day, week, month, or year.

6. I will set goals for me and my Lungs, and when we complete them, I will reward us handsomely. The goals I set will not be based on how "hard" I work out, but how often, as I cannot truly control how fast I can go or how long I can go on a given day.

7. I promise to keep exercising my Lungs during a health setback- especially during a health setback. My Lungs are sad then and need the pick-me-up endorphins.

8. I will use The Vow of the Cardio to defeat The Demonic Yukkies and their ever-increasing liege, and drive them out of my Lungs forever.

9. I promise to review my Vow regularly, both alone with my Lungs, and with my physician, to make changes as needed.

10. I promise my Lungs that I will be honest with my Readers about my adherence to The Vow.

Make you own ten-point "Vow of the Cardio" today! Don't make YOUR Lungs say, "What have you done for ME lately?"

In an upcoming post, "The Lung Agreements," or what your lungs promise to do for you.

-CG

Monday, July 13, 2009

Growing Older With CF

NEWSFLASH!

Read this article! Boomer, CysticLife, Ronnie and all the Twitterers are tweeting about it. AND, it's about ME. Well, a generic version of "about 30 year old CF Patient" ME. If we can't find ourselves in our demographic, where CAN we find ourselves?!!

It's a really great article!!

Sunday, July 12, 2009

Reader Surge!

(Picture a cool graph from statcounter that I cannot upload.
At 7/11/09, the Readership Spikes UP!!)

"Cystic Gal" sees unprecedented readership yesterday! Most Unique Readers in one day, ever!!


71 Unique Readers!

Including 54 NEW READERS! WELCOME!!


You guys sure like the funny posts. I'll try to keep 'em coming. And thanks to those that twittered about my blog.

Saturday, July 11, 2009

Blogvitation

For tonight's blog, I invite you to read this particular post from one of my favorite bloggers . . .

The famous CF Husband!
http://cfhusband.blogspot.com/2009/07/reality.html

This post tackles something that has been a big issue in my life recently: "the big talk." What is the fine line in discussion with my loved ones, family and friends, about my health, my future, my plans? This is also, actually, an issue that I seem to be tackling with my medical staff right now too. They are sensitive to my emotional nature and my anxiety. In their sensitivity, I think our conversations are moving more slowly than either of us would really like.

Isn't that odd?

It's like being on a date where neither person wants to be there. Both people want to get up and leave but CAN'T!

In this situation, both parties want to have a discussion, but don't.

Humans are weird this way.

Deep thoughts by CG.
Goodnight!

Friday, July 10, 2009

Top Ten Excuses Not To Exercise with CF (and why they are crap)

DISCLAIMERS: 1) I am not a doctor. At all. I have two degrees in the arts. Half the time I don't even believe in Western Medicine.

2) I am teaching young children this week. As a result, I do not use any bad language or even frown much all day. This leads me to swear a lot at night. I don't know why, but it's true. The below post has some cursin' in it.


Top Ten Excuses Not To Exercise with CF

1. I can't exercise on an empty stomach, and I haven't eaten something in at least . . . ten minutes.

2. I just ate so many calories, I can't exercise NOW! My tummy may start to hurt at any moment. I must lay down and wait for it to start.

3. I better not burn too many calories. I'm trying to gain weight. I will eat this treat instead of working out. All the better!

4. I will have more energy to exercise after my nap.

5. I walked around so much at work today. And that is extra hard for me, since my lungs are broken and all.

6. My oxygen is so low today, I can't exercise. It might kill me dead.

7. My oxygen is super great today, my lungs must be nice and open already! Good job, me. Time for a nap.

8.The gym has so many germs. I can't go there September through March.

9. It is lonely to work out alone at home. It depresses me to think of it. If I get depressed, that is surely bad for me, too, right?! I must avoid it and all its possible causes.

10. Remember that hemoptysis in 2005? That was horrible. Don't want that to happen again. Better not do anything too crazy, today, July 10, 2009. Better take some Vitamin K and take it easy.

If The Top Ten Reasons Not to Exercise with CF did not address your own reason, maybe your reason is more serious. More important. More personal. For this, See my post on REASON #11 .

Why These Excuses Are Crap

1. Eat a power bar and suck it up. You can eat all you want in just thirty minutes (or so.) If CFers avoiding doing things every time they felt a bizarro hunger pang, nothing would ever get done. Ever. The CF world would stop turning while we all ate a Snickers. Learn to pack some goddamn snacks already.

2. Thinking about possible things that can go wrong with your body in the future is not a good reason to not exercise, not take a job you want, not date a boy/girl, or just about anything. I mean, jeeez, worry about all the things that are CURRENTLY wrong with your body and leave the future to the psychics (at statcounter.com).

3. Exercise will make you super hungry. You will eat more calories than you burn away because you will be craving craving craving foods when you're done and the next day. If not, drink an Ensure/Boost/ScandiBLAH and once again, suck it up.

4. There is no actual evidence that napping leads to increased exercise. Sorry, folks. Exercising, however, will make you sleep better at night so you will be less inclined to feel like you really need a nap during the day.

5. While your lungs might be "broken," they are not yet broken down. You need to keep driving that "1980's bitchin' Camaro" set of lungs around the block. And around the block. And around the block. For at least 30 minutes.

6. If you know your oxygen SATurations are low, it means you monitor your SATs, which probably means you have supplemental oxygen. So crank that shit to 4L and get off your ass.

7. If your SATs are great today it probably means that you exercised yesterday. Wouldn't it be great to have great SATs tomorrow, too? Plus, the Demonic Yukkies in your lungs don't remember that you exercised yesterday. They go ahead and continue their mighty wrath ignoring your exercise goals. You must beat them down with the Vow of the Cardio. (more on this, the Vow, in upcoming posts.)

8. Okay okay okay. The gym has germs. You have choices: invest in a sturdy piece of home exercise equipment; take the workout outdoors (yikes!); rent some good cardio DVDs or start to TIVO the exercise channel; or get the f over it, sanitize your hands, and go to the gym. You must make a choice.

9. It is not really lonely to work out alone. You can cough up the Demonic Yukkies and look like shit and play Justin Timberlake, or Meatloaf, or whatever your secret workout music is. Without the damn earbuds.

10. Similar to answer 2 above, thinking about all of the things that have gone wrong with your body in the past is not a good reason to not exercise. Continue a reasonable level of worry over all the things that are surely CURRENTLY wrong with your body, which might even lead you to crave exercise, and leave the past in your Hello Kitty Diary.

If The Top Ten Reasons Not to Exercise with CF did not address your own reason, maybe your reason is more serious. More important. More personal. For this, See my post on REASON #11 .

Thursday, July 9, 2009

Off the horse? On the wagon? er...Exercise Developments


I fell off the exercise wagon this week. Just as I decided to start logging my exercise on the CG blog, poof I stopped exercising. First it was the holiday weekend with lots of socializing and, "Hey, no one else is working out today, right?" Then it was the purchase of some new porch furniture and, "This is so relaxing!" (sitting on my ass, is in fact, relaxing). Then, my rehearsal schedule changed and it was, "I deserve a nap today," followed by, "It's too late to exercise."

I teach my students that if, while working on a scene, they get distracted, they lose their energy, or they feel silly and their focus wanders away, that it doesn't matter to the audience. I tell them, "It doesn't matter where you go, it just matters that you come back." I hope that the students return to their scene work after a failed moment with a larger achievement. I tell them that the audience usually forgets the moment that sucked if the moment after it is outstanding (I think this is true most of the time).

Today, I decided to apply this same theory to my exercise.

Dear Exercise, I'm back. Love, CG.

Goodnight! CG

Wednesday, July 8, 2009

CG Celeberates 500th Unique Reader - ALREADY!

Congratulations, Orchard Park, New York,

It's YOU!!! You are our 500th Reader. You win my everlasting love and adoration!!!

Next Reader I'll track . . . #1,000!

When will YOU be? WHERE will you be? WHO will you be?


Number of Entries:
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July 7th 2009 11:01:41 AM
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Orchard Park, New York, United States
Verizon Internet Services IP ADDRESS BLOCKED FOR POSTIN'- CG

Tuesday, July 7, 2009

What Are You On, Man?

Reader Question: CG, what meds are you on? What do you do for exercise and etc.?

CG Answer:

I decided to make y'all a list. I also added this to my left hand column and will update it as I go!

New Meds since hospitalization Aug '09: (other changes noted in red below)
5-7.5mg norvasc for high blood pressure,
750mg oral antibiotic cipro BID
following 30 days of IV antibiotic tobramycin and 21 days IV antibiotic cephapime.
Currently completing 14 days merapenim IV.
some other pill that starts "cyph" which is how I abbreviate it to treat possible seratonin syndrome, (cyphohepdadine??!!- don't make me get up to look).


Px Pills:
Zithromax 3 x week.
Mephyton 3 x week.
Prilosec 40mg 2 x day.
Ultrase MT 20 with food.
Sertraline 1 x day.
Valium as needed for sleep, anxiety.
Source CF Vitamin 2 x day.

OTC Pills:
Vit C 2 x day.
Vit B.
Airborne when something's comin' on. That's right. More h20 soluble vitamins can't hurt us, right?

Inhaled:
Symbicort 2 x day.
Ventolin before airway clearance and as needed.
Flonase 1 x day.


Nebulized:

Pulmozyme 1-2 x day.
TOBI 2 x day, month on/off.

Treatments:
Airway Clearance: Autogenic Breathing/Self-Administered or inflicted Postural Drainage 2-3 x day.
Rotating Cardio walking 2.5-2.8mph w/ 5L supp O2 - DAY 1 and
Hatha Yoga with different goals as needed -DAY 2
Nasal Rinse (neti-pot) as needed.

Oxygen
3.5L with exercise
1-2L with sleep
and as needed

Nutrition Additions :)

Ensures 2/day
Lots o' Gatorade to replace sodium.
High Salt, High Protein, High calorie diet.
I drink coffee.

PS! Turkey!

I don't have 1 reader in Turkey. I have TWO. :) Yay, CF Readers in Turkey! You should have coffee or something. :)

Monday, July 6, 2009

Dear Dr. U-Bird^

Dear Dr. U-Bird, Dr. B-Bird, and even Dr. G-Bird,

If there were a Cinnabon in Boston, I'd be fatter.

Next study to fund: A Cinnabon a day keeps the Ensures away. Look into it.

Love, Cystic Gal

PS. More tomorrow, loyal readers. I'm tired after a day back in the rehearsal room!! And my voice is tired, too! Plus, just started back on TOBI 2x day, which is not great for the chords. They're stripped down from all the talkin and the inhalin' and the chem chem chemicals going over 'em.

To gargle, to sleep, to dream, to wake, to teach.

Dramatic enough for you?
cg

Sunday, July 5, 2009

Video "Starring" bloggy friend Ronnie!

Congratulations 400th Reader!!

0
Rome, Lazio, Italy
H3g Italy [Label IP Address]
Cystic Gal
Cystic Gal


Italy I could not make this up if I tried!!


Congratulations to our new International Reader, our 400th Unique Reader, in Rome, Lazio, Italy!!

Welcome, also, to Romania! Two new countries in one day! CG now read in 7 countries worldwide!

Keep up the good work, folks! Goodnight!!

Saturday, July 4, 2009

Saturday, In the Park . . . I think it was the 4th of July-y.


Happy Independence Day, U.S. of A! I have never been more proud to be an American than this year. I have never been more politically invested than this year (barring, perhaps, a year in middle school where I was really into politics which faded when I met J-hottie^, my first love).

In the spirit of this 4th of July, Independence Day, and in the spirit of this blog, "Cystic Gal," I would like to reflect upon the ways that CF has made me a more independent person, both when I was growing up, and today.

As a first point, I know that I am empowered over my body, which contributes to my Independence as a person, a woman, an artist, even dare-I-say-it, lover. From a very young age, I have felt this empowerment over my body which paused only for about 6 months in middle school while my breasts grew. This great empowered feeling is mostly a blessing, but as I grow into later stages of my illness, it is also, I find, a curse. I believe that I am empowered over my body largely because of CF.

I have been thinking on this over the past two days, as I read my friend Kathy Rooney's book, _Live Nude Girl: My Life as an Object_, in which Kathy reflects, as you can imagine from reading the title, about her upbringing and her world's dealings with her body. Though the book is focused on Rooney's work as a nude artists' model, the book analyzes other nude and naked means of employment. (If you are wondering what the difference is between "nude" and "naked," you should certainly read her book.) Assuming you have not read her book, though certainly some of my readers have, Rooney writes of the many messages she received about her body, like we all do, from her parents, her siblings, the "so-called slutty neighborhood girl," her friends, and the opposite sex in general.

I was stuck stuck stuck on this quote, the one above, about the "so-called slutty neighborhood girl," in that I was recently caught in a conversation or five about a friend's abhorrence that her son was dating THAT VERY GIRL at [...] school [...]. THAT GIRL, you know, "the slutty one." Now, my friend never actually said the word "slut" when talking about this girl. But it was, I felt, implied by the other things said about the girl. Perhaps I was influenced to hear this by the fact that other friends went ahead and said it - "slutty" from the comfort of their distance from the relationship itself. Torn between my feelings of confusion that a friend would judge another woman, well . . . girl, so openly, and understanding her very visceral concern for her son's well-being, I was dumbfounded trying to think of things to say to my friend.

I find it funny that every neighborhood, every school, every office has a "so-called slutty girl" that we are meant to be afraid of, titilated by, ashamed of, and sorry for at once. By describing as "so-called," Rooney admits "slutty" is just a distasteful label put on young girls who show too much leg, have breasts that are "too big" or who make out with boys "too early" on a comparative basis with their communities. However, Rooney's description of this girl and my recent ponderings over my friend's parental conundrum had me thinking, "Why is there always only ONE 'slutty' girl?" As far as I know, she always has friends, this slut-girl, and they always dress like her, and make out with boys like she does. Some of them are even blessed with the same great rack. [...] Yet there is always one leader of the pack that is The Slutty Girl you know.

The thing that The One Slutty Girl has that members of her harem don't is empowerment over her body. Actually, the MOST empowerment over her body among the girls. This is why there is only one girl, she has these features most of all, though others possess them. She wears the shorter shorts, and the revealing tops and she makes out with the boys "further" than she "should" because she is trying to figure out something about her body, the body that empowers her to control the boy she's with, control even her friends, perhaps control herself. The Slutty Girl IS her body, or she would like you to think that.

Sure, The Slutty Girl might have secretly low self-esteem, she might write sad things in her journal at night or be a coke-head on the side for all we know - or she might watch the History Channel at night and be into existential poetry. We do not know. All we do know about The Slutty Girl is that she doesn't mind if we look at her, and she doesn't worry about hiding her boobs every time she bends over, and she probably won't grow up to have sex with the light off. Whatever's going on with The Slutty Girl's inner-workings, she owns that body of hers and she's using it for something, whether sexual in nature or not. She owns her body in a fierce, independent, arrogant, flaunty, go-ahead-and-look-at-me-and-screw-you-for-looking kind of way that the other girls around her, try as they may, do not have. This makes her The Slutty Girl while the others are just regular "sluts" in the eyes of those that behold them and the mouths of the neighbors gossiping.

What does this have to do with CF? Hard to tackle in my remaining 12 minutes of bloggy time tonight. (That's right, blog readers, I'm trying to limit myself to only 1 hour of bloggy time per day! And that includes stat updates and viewer questions!! YIKES!)

[...] I can say that I [...] became aware of my body as something that needed to be used for specific purposes at a much earlier age than other people - men or women. I think that most people don't think of the usefulness of their body until at least adolescence. By "usefulness" I mean the active posing of questions regarding the body's ability to complete a task for the mind, as in "Can my body do this? Can my body do that? What must I do to my body so that I can eventually do that thing-I-wanna-do? Can I run? Can I swim? Can I hold my breath as long as her?"

Non-CF children grow up and they do or they don't accomplish tasks with their little bodies. These accomplishments are inherent. They are learned through observation. They are mostly unconscious. CF children grow up and they learn to-do-to their little bodies. It is taught, it is rarely observed, it is not inherent, unconscious, or even natural: Put the big pills in your mouth and swallow: to-do-to-your-stomach what your stomach can't-do, digest; Inhale the mist into your lungs deeply: to-do-to-your-lungs something they can't-do alone, fight disease; Cough out the secretions: to-do-to-your-lungs/trachea/mouth/stomach what you'll rarely see another human do: force expectorate (to remove disease).

CF children learn very early something that others don't learn for many years, that their body is something that can be forced, coddled, calmed, assaulted, overwhelmed, and freed - and that sometimes the most painful acts against them are the best for their bodies, though sometimes, there are just painful acts. It's a very tangled message that forces a child, most hopefully in my opinion, to assert This Is My Body- a deep and powerful understanding that changes the way a child views her/himself and the other bodies s/he interacts with.

In closing as I see the clock . . .

CF children, The Slutty Girl and even, dare I say, Kathleen Rooney and the artists' models she writes of, have one shared understanding: As soon as they learned to empower themselves into their own bodies, to own their own bodies, to objectify their own bodies and to use them as freely as the world around them would - to feel better, to feel really good, to get reactions, to get sex, to be admired, to become art, to get money - whatever the use - as soon as they learned to use their own bodies in the way that the world used them, they learned that this self-empowerment was very, very bad.

More on this topic in future days. My bloggy time is up!

HAPPY 4TH!!

CG