Today Blew

Disclaimer to friends and family: Tomorrow I have a bronchoscopy, a procedure required many many many times post-transplant, that is not a big deal most of the time. Tomorrow is one of those times. In fact, I'm sorta looking forward to it because I haven't been sleeping well lately, and surely I will sleep well tomorrow, day and night! :) Today's annoyance at the hospital was not medical, it was ... procedural / paperworkurital / red-tape-tastical. Read the whole post- see how there's nothing in there about anything being wrong with me?   Everybody's blowin' up my phone before they read the email. :) Love you guys!

Dear Hospital Place;

Today was supposed to take 1-2 hours . . .

[approx 300 words have been edited out for my own protection,

but I will email them to you for your amusement, followers.]

. . .a fracking nightmare.

Sincerely,
:)
Beth Peters

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.

My Twenties

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

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

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

"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

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

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

Anger: Tell Me How You Really Feel

NEWSFLASH!
A big day for CG!
CG Welcomes New International Readers!
Hello, Australia and Netherlands!
*Also, hello to new readers in Canada, UK and Turkey*
**First time EVER, 37 UNIQUE READERS TODAY!**
******************************************************

One of my first reader inquiries came from KR, who wrote, "Hey, CG, hope you'll say more about why you think you've been feeling angry of late, since I suspect the reasons will be complex and insightful. An impulse not to be angry--to do one's best to keep-it-positive--is admirable, but sometimes anger is the most honest and justified reaction to a situation. And it's often a productive one. To whit: maybe anger is one of the big reasons that you started this blog, and that's nothing to apologize for/feel bad about. Just sayin'."

I have been meaning to follow up on this comment for a while. I needed some time to think on it. This posting will be incomplete and I will have to follow up in later posts, because it is already very late and I am trying to keep myself to a post-by-midnight type of schedule.

So . . . I think that I have been increasingly angry over the last three years about having CF. I was so angry a few years ago that I was turning away, pretty dramatically, from the medical establishment altogether. I was meeting with doctors only to get prescriptions, and on a pretty hard-core self-management bend from about 2005-2008. Thankfully, during this time I suffered very few periods of illness, and no real exacerbation or crisis. Unfortunately, I also lost a lot of my lung capacity during this period, which must have slowly sort of eeked away from me while I harnessed my fear of doctors and drove the ship of my personal life and career.

Looking back, I am not sure that I would have done it any other way, or that staying tethered to the CF Clinic would have changed my health outcome. From 2005-2008 I led a very productive, very physically active life that has propelled me into the lifestyle that I have now. If I had followed the medical advice I was getting at that time, something in my spirit and in my logical mind tell me that I actually would have suffered a worse fate.

So, I became angrier and angrier at the medical community, at the entity of CF, and at people in my life who were asking me to make CF a greater focus. I had been lied to by the medical community. They told me that my life was ending, and they were wrong. My life is still going, years later. They told me that the things I enjoyed: teaching, rehearsing, socializing - were contributing to my poor health. I believe that these things actually are my strongest reasons to live.

I have much more to say on this topic, but I will leave it for another day, as it is time for sleep and past my "publish post" deadline!

But this is the point: I was angry, and am angry, because I am having trouble resting in the middle of my distrust with the medical community, and my need to be involved with them, my fear of doctors in general, and my security with my current medical staff. I am in a place that to me, at this point, seems innavigable. And I'm not used that. I'm a very directed, very forward-moving type of person. Being unable to drive my own ship, and being forced to have a partner who I will never really trust (the medical community) makes me so so so angry.

Goodnight,
CG

NOTE IN FOLLOW UP 7/3/09: I do currently trust my CF Clinic staff, I think, as much as I am capable of trusting medical professionals. I am not looking to change clinics right now. I think that would make my "issues" worse. But I welcome tons of suggestions, so keep 'em coming, people.

The Morning After

So I shared my first rant on "Cystic Gal" yesterday, just as I gained my first four followers: three that I know personally; one that I do not. Almost immediately, I felt so bad about my rant. I thought, oh great, now those four are never going to read my blog again. I mean, who wants a downer? Though I tried to share some humorous words and I found my chosen pseudonyms to be funny as well (T-Money in particular is pleased with her pseudonym IRL in real life), I thought
oh me oh my I have started on the wrong foot
and
why am I so angry about my disease right now?
I used to be so much more worldly and global and kumbaya in my thinking. But not this year, or last year for that matter. These years I've mostly been angry.
WHY?
Then, this morning, when on the phone with my sweetie, I had to hang up on him. I had the worst coughing fit that I have had in months. It lasted minutes and minutes (which might not sound long but a minute is LONG when you can't...uh...breathe) and was the kind where you almost puke and you cry a little bit and you get all sweaty and maybe you say the F word a few times and your friend is on the phone on mute thinking maybe you passed out on the bathroom floor which adds to the drama.
And I was really really angry.
I probably won't remember this coughing fit a few months from now, the next time I ask myself:
Why am I so angry about my disease?
More later...
CG