Wednesday, September 30, 2009
A few days ago I received a correspondence about faith that put me in a tailspin. I don't want to discuss it too much here because of some privacy issues, but I was all a-mess over this. I was angry, then I was sad, then I felt bad for the other person, then I was just confused. Then I talked to my friend Lucy^. She pointed out that basically, I was feeling disrespected.
As a Catholic. As a new-age-crystal-wearing-hippy-type. As a descendant of Native Americans. As a woman. As an adult. As a politically liberal American. Etc. And yes, I realize that some of those labels don't seem to belong on the same name tag. So be it.
I realized, that this is the line I was trying to articulate in my earlier post, An Open Letter To God, where I discussed my negative feelings toward some expressions of faith. These are the expressions of faith that upset me, as a currently-ill person preparing for transplant:
It upsets me if people talk to me about Christianity as though I'm not a Christian. My first name is Mary. What are the chances that I haven't heard about Jesus? I mean, seriously.
It upsets me if people accuse me of not praying enough over my health. I am not sick because of a lack of prayer. I will not get "better" because of increased attention to prayer. If I succumb to illness, it will not be because I did not pray. It will be because I have Cystic Fibrosis. I always want to say, "Oh! Prayer! I have been meaning to look into that!"
It upsets me if people presume to speak to God for me. People can speak to their God about me, sure - have at it. The only person who can speak to God for me, is me. And perhaps a few other people. Is it you?
It upsets me if people assume that an open discussion of faith requires one person to adopt the other person's beliefs by the end of the conversation. I believe much can be learned by just putting ideas on the table, and looking at them. Look at your belief- over there. Look at mine- over here. Look at that other belief over there - what does it all mean? I believe in asking questions of one another, not shouting answers. Hey look, it's a gummy bear. What does a gummy bear MEAN?
It upsets me if people assume that a question of faith indicates a lack of faith. Sometimes, it's just a question. I have a garbage disposal that I use daily. I believe that it works. Sometimes I wonder, where does the food go? But I still believe that the garbage disposal works. This was the least-offensive metaphor I could come up with, believe it or not.
It upsets me when, unprompted, every single person takes the news of transplant as an invitation into a gigantic spiritual conversation. I'm totally fine with it with family and friends, but I feel like 90% of the people I interact with go right for the deep talk, regardless of our prior relationship. I am tempted to be like, "POP QUIZ: What's my last name? (Gal) Am I married or single? (Single) Straight or gay? (Straight) What do I teach?" (Drama) For example, at times when this has occurred.
That being said, I LOVE THE COMMENTS THAT HAVE BEEN WRITTEN ON MY POSTS SO FAR! AWESOME. KEEP 'EM COMING and a big SHOUT OUT to CYSTICDAD who chimed in! Yay!
That's all for tonight. I'm tired. Doc tomorrow. Low oxygen today. Must sleep well.
PS. Ronnie and I are still in a blogmance.
PPS. Thanks so much to everyone who donated to Unleash Your Story.
PPPS. Gummy bears.
It's the final night of the "Unleash Your Story" campaign for the
Cystic Fibrosis Foundation. I have had a good run here! At the offset,
I hoped to raise $1000 for CF. I am a bit shy of that goal. I asked my
avid readers to donate $2 for every quality post that I wrote put up in
September. By my calculations.... If you are reading this...you owe me...
16 quality posts times 2 dollars per post = 32 DOLLARS!
I only need 5 people to donate $32 to make my goal! Too steep?
I only need 8 people to donate $20 to make my goal! Still too much?
I only need 15 people to donate $10 to make my goal! Feelin' super broke?
5 DOLLARS. You can give up a latte or a beer in the name of my CFF campaign.
If 29 random CG readers donate $5 by clicking HERE,
or by pledging to me and then mailing a check to the CFF,
I will make my goal!!
I have to make my goal, people!!!
Have I mentioned I'm getting ready for
transplant!? You have to keep my hope
alive, people! Don't let a sick girl down!!!!
Boohoooo, I'm crying just thinking of not
making my goal!! Oh, I - can't - breathe
I'm crying so ha---arr----rrdd!
Pretty good, heh? I told you I'm a drama teacher.
In all seriousness, please donate today. Help the CF Foundation move
forward with life-saving research, patient education, and advocacy
initiatives that help the CF community, everyday. See my initial appeal
Tuesday, September 29, 2009
Monday, September 28, 2009
There is only one thing to do:
NOTE: The second take is easily 1.5 million times funnier / more embarrassing
than the first for at least 5 reasons.
Read tomorrow to find out what the 5 reasons are!
Tomorrow, I promise to follow up on all posts of recent!
For tonight, Just dance,
Sunday, September 27, 2009
How are you? I am fine. Just kidding.
I decided to write to you tonight instead of talk to you so that I can pin down a few issues that I am dealing with this week, and particularly today. So, on with the normal order of things: First,
Thank you for all of the talks and visits with my friends and family today. Thank you for my party last night. Thank your for my creative thinking today and for the tons of mental energy I had even though I felt physically tired today. Thank you for the phone. Thank you for my cats. Thank you for providing me the means to create financial stability for myself at this trying time. Thank you for so many other things I can't think to type right now. Thank you for my blog and for all the people that read it and find it at all thought-provoking, comforting, funny, or clarifying even if they disagree. Thanks for my fast typing speed. And on and on.
I am sorry that I had some negative thoughts and feelings today toward myself and others. I am sorry that I am not always an honest person. I am sorry that . . . hmm really that's it on my mind right now.
Perhaps you read my earlier post, you know, in your websurfing, and saw that I have this nagging question about heaven. I keep coming back to it, What about heaven? Not in a desire to go to heaven early, per se. I am not suicidal. I just am comforted by the idea of heaven, and want you to know that I have heaven on my mind a lot, and could use some guidance in my thought process re: heaven. I thank you for creating heaven and for overseeing it and for fielding my question among the billions you must get re: heaven.
The other thing I'm dealing with today is -- I am interested in this discussion of faith that comes up surrounding health, transplant, etc. However, in my interest in this discussion, I also have a really negative reaction to certain offers of faith. It seems that people think if I am talking about faith, it must mean that I have none - which of course I have a great deal of faith. Or people think that if I am talking without decisiveness about religion it must mean that I have no religion - which of course I have too many religions. I want to keep allowing the conversation to happen around me, but I also want to contain it. I struggle with this issue.
Because I am sick, it does not mean that someone else's religion will make be "better." I am not sick because I didn't follow someone else's religious decree. What is the best way to respond to people that step over the line from conversation about religion and faith to instructing of how my illness is created by a lack of their faith?
God, this is a definite "what would jesus do" type of question. I mean, seriously. What would he do? Perhaps he would say, "I thank you for your prayers," and ignore the rest of it? I don't know. I think there is an opportunity to say, "Thank you for praying for me, but I want you to know that I'm not sick because of "sin" and I already do believe in God." I mean . . .
Well you get what I mean. What do you think, big G?
Thank you for tomorrow.
May the light within you, shine within me, and the light within me shine without. (C)MEP
Saturday, September 26, 2009
The single best resource I have come upon so far is the book Sick Girl Speaks! by Tiffany Christensen. This is a book written by a fabulous cystic gal who had two double-lung transplant surgeries -that's right, two different transplants of two different lungs at a time. 6 lungs in her body over the course of her life.
I recommend this book to anyone who wants to learn about chronic illness as it is experienced from a patient perspective. I recommend it to my own friends and family who are trying to understand what I am going through right now. Tiffany and I happen to share a lot of the same views (not all, but a lot), and I find myself in the pages of this book over and over again.
You can find more info on the book at Tiffany's website, http://www.sickgirlspeaks.com/ .
Friday, September 25, 2009
If I Were a Blogger, I'd Blog In the Mor-or-ning, I'd Blog In the Eeeeeev-ening, All Over This Blo-og
Tonight will certainly be a stream of consciousness post because tonight I am laying lieing lying on my couch with my feet literally up
put your feet up
style and the computer is on my lap
the thing i do enjoy about writing s-o-c on the computer and not by hand is that i seem to be more decisive about line breaks
like that one
no that one
okay today was a good day except that i was fucking tired all day had a headache and a sore chest and also sometimes my head hurt but my oxygen was better than yesterday cuz i checked it every hour on the hour even once in the middle of a nap which means i must'nt've been asleep for reals.
i love my cats and it was a big moment for me when i realized well of course i should get a transplant if i don't get one and i just don't get one and all that entails after that avoiding the d word that begins with
if i don't get a transplant then who would feed my little cat?
pause squeeze squeeze drip drip more medicine into my little medicine bong
i like to make street drug references when i talked about my med drugs because then it seems funny hip and sixties or something
smoking the tobra bong.
so now everyone is reading my blog parents friends coworkers lovers random cysters and fibros and not just cgals, and i am so glad and yet there is the pressure. i love the pressure, what am i talking about. i like that i have an audience though the face of this audience in changing. by face, i mean, IP. we are our IP addresses.
when i was in high school i had a friend, S-Oteric, and he wrote lots of poems. most of them i think were plagiarized or at least i thought that then because they were so good and he was so young and otherwise thoughtless. or thoughtful. i wonder what happened to him. anyway, now that the internet is what it is i have come to believe that he really wrote these poems since they don't really seem to exist anywhere else
on the interwebs
and one of them he said was about me and there were a few lines in it that stuck with me that i think of when i'm doing drugs like this
"it's a chemical world now baby." was one of them
"i am not a prophet, anymore." was another. or was it angel? was it that i wasn't an angel anymore? anyway. I wasn't [some certain sort of special holy something] anymore.
I wonder if that will happen to me one of these days here. I'll be like
sorry guys i gots nothing to say no more
not that i think i'm an angel now. as i certainly do not. and am not.
I once had a lover that said I was an angel. I believed him, I think, for a time. Then we he left me I thought he must have been lieing about that but then now sometimes I think maybe he wasn't lieing and he just was leaving. Hmm. something to think about there.
I've been having a lot of private correspondence of late with people on THE LIST, the transplant list, the tx list and the question of spirituality keeps getting kicked around, and I think about things and I write about things, and I know what I believe.
I believe in God and heaven and most of the basic parts of what one/i/some call the "old church" of catholicism, the mysteries of faith and blah blah. I believe in the spiritual religeous part - and don't pay any attention to the policitical parts and by that i mean anything added after the initial formation of the church.
so anyways i believe in God
the mystery of faith
the holy spirit
a line between the living and the dead /ghosts and spirit world
reincarnation at times
the soul dwelling within the body physically leaving the body to enter heaven
energy residing in the cells of living and nonliving matter i.e. cellular memory
i believe that if i were to be given new lungs they would be the greatest gift from someone else and their family to me, they would be giving me life. i should receive this gift, if it is given to me.
but part of me still says, but what about heaven? what message does that send god about me and heaven? i believe that if i live a good life, and try to be righteous and responsible and promote good in the world through small acts, i will be welcomed into heaven. so if i'ms spending life preparing for heaven, and my life is nearing it's close (whatever time line that is)- shouldn't i be ready to go to heaven? by getting a transplant, does that imply that I don't want to go to heaven?
I'm just saying I don't want to avoid heaven if that's my only shot at going!
Does that sound dumb.
I don't care.
I'm leaving it there.
I keep coming back to this basic question that is hard to articulate and certainly not explained well there at all. In my head, the question is simply:
What about heaven?
Having low oxygen creep up on you is such a menace. Like having bad blood sugar - you feel like crap just enough to know that you feel like crap, but that crappy feeling keeps you from having logical thoughts like "maybe I oughtta check my sugar," or "maybe my 02 is low?" Instead you lay around for a few hours wondering, vaguely, what might be wrong.
Also the POTpill didn't help. But I gained 3 lbs this week. No diggity. No doubt.
I blame this low 02 on my awesome workout yesterday. I must've made me some muscle mass :)
Tonight, I was happy to see that Jackie Warner's workouts are back on OnDemand for free :) !! I did the 1-on-1 core workout and it was awesome! During the workout I started to fantasize about Jackie coming to Boston to do rehab with me and turn me into a hot rockin new lung havin dancing diva. This resulting in the following tweet:
CysticGal@Jackiewarner10 i love your workouts. i have #cysticfibrosis and am preparing for transplant. i want you to come do rehab with me!less than 20 seconds ago from web in reply to Jackiewarner10
Then, I watched grey's anatomy with one of my besties, C-Daddy. He baked cookies, I ate two pudding cups, and then we watched the show while eating cookies, pudding cups and ice cream. The POTpill definetly helps with that calorie consumption! Grey's was pretty good but resulted in this tweet:
CysticGalon grey's tonight george o'malley died, donated lungs to patient with #cysticfibrosis. (fictional). Hard to watch with my pal, but good 2 c.
Poor C-Daddy and I both got all misty eyed and cried because well, there is a lot to to think about there.
Hmm. This post is not nearly so much stream o consciousness as I would like. It's more like stream o hello kitty diary.
Goodnight, I'm gonna watch The Office and eat yet another pudding cup. I friggin love those pudding cups.
And don't you worry, DancingGal is coming!! I promise.
Wednesday, September 23, 2009
Tonight's real post is below! Please read IT.
|9.09%||the once was a gal poems|
|9.09%||CFers wearing oxygen|
|9.09%||"I'm ok you're ok" blogspot|
|9.09%||florence night gal|
|First Time Visitors||18||15||22||46||8||22||15||146||21|
AND- Congrats to the "Unleash Your Story"
Team Cystic Gal!
We were the NUMBER ONE EARNING TEAM THIS WEEK!
If you haven't donated to "Unleash Your Story" to help fight Cystic Fibrosis, you can do so by clicking HERE . Every dollar counts, so consider donating today!
Okay, today was a big day. I got a wonderful email that helped clarify my truest motivation in writing this daily blog and letting whatever comes out, come out:
[...] Anyway, word on the bloggy street is that you're starting the transplant process? I'd love to chat with you about it, although I'm sure as the sister of a post-transplant CFer you could probably fill up multiple books with everything I still don't know about the whole thing. I'm definitely learning as I go here, which I guess is what all of us do with this disease, seeing as it never seems to strike the same way twice. I have to say, though, that I read your recent transplant post and found it beautifully powerful -- I empathize so much with your sense of things moving faster than expected (this time last year I was told I was "too healthy" for transplant and probably had another 2 years or so before I needed to be listed, now they're discussing listing me at multiple centers to move the process along), but more than that I just can't stop wondering how this CF fits in with the "rest" of me, which has always been and still is for the most part extremely active and, well, healthy? At any rate, whether I'm projecting or not, I loved what you wrote and how you wrote it. There's so much about this whole mess that is difficult to express and put into words -- it's fun to come across someone so eloquent and accessible about it all. [...]
Hope you're doing well aside from dealing with all this shit right now. And, by the way, I totally swear by Bare Minerals makeup too, which has to say something about great cystic minds thinking alike!
I write the blog because I think that I have something to say that other people want to say, but have trouble saying. I write the blog because I think best by writing. I don't know what I think about something, sometimes, unless I write about it. So why not share that writing?
Okay. AND today I kicked some serious aaaaasssss at exercise and walked 1.3 miles in 30 minutes at a max of 3.2mph. I was hoping sweating that much would decrease my hot flashes, but so far, it has not. I am like Delta Burke up in here.
I think that is all.
Today I got the idea to post a video of my dancing around my house, since that is one thing that I do to stay fit and be in a good mood. What do you think? To post or not to post? This could be my project for tomorrow.
Goodnight from your sweaty, tired CG.
Tuesday, September 22, 2009
ITEM THE FIRST:
In response to yesterday's post about Beauty , I discovered via email, tweet and other new-fangled electronic means that there is a big hilarious discussion among CF women about the topic of makeup and seeing the doctor. Apparently, the manipulative altering of the female appearance does not stop at the hospital door. I hope to post a poll about this on my blog tonight following tonight's post.
ITEM THE FIRST POINT FIVE:
Boston readers, email me please. CysticGal@gmail.com
ITEM THE SECOND:
I was on the phone with my dad tonight and he shared with me that he is struggling to "catch up" with all this latest news of my health. I realized he is the same position that many of my family members and friends may be in. This news of transplant, it seems, has surprised him by coming much earlier than he thought. In this conversation, we talked about the changing "face" of CF. Growing up in the 80's, the image of a child struggling with CF looked a lot different than the way that I look right now. First of all, the child in that image was a that, a child, and not a 29 year old woman. It is hard to wrap your head around my lung capacity being so low, while the rest of me is so . . . me.
I always joke, "My lungs aren't on my face," because a lot of people comment to me, "But you don't even look sick." Doctors have said it. Co-workers say it. Friends say it all the time. It's interesting - the idea of "looking sick." As a drama teacher, I might be going on conceptual limb here, but I think that people really mean, "You're not acting sick," but I have now decided that issue is a different blog post.
Which brings me to
ITEM THE THIRD:
I know what my gift from God is. And it's ain't Cystic Fibrosis.
My gift from God is a boundless, undirected, uncontainable energy.
I have good ch'i, man. Or atleast, I've got ch'i. Granted, I do not always harness this energy for good. I do my best to never never use it for evil. But occasionally this boundless energy, with it's, you know, lack of boundaries, is spent unwisely. In any event, I have a lot of mental, spiritual and intellectual energy. I do not always have a great deal of physical energy, but the other zip zip zappping areas of my self, I believe, spill right into the areas that are running low.
One of the first times I was really sick was my junior year of college, over Christmas break. I got sick in the days leading up to flying to see my parents, and then I got really really sick on the flight. I remember that it was hard for me to stand up long enough for the holiday pictures, and I also know that I started coughing up some really nasty stuff that made me realize I was sick in a whole new disgusting way that I had not been sick before. (gross side-note). That holiday break, I wrote my first full length play in two weeks. And it was a pretty good play, you know, for a first play from a 20 year old. I particularly remember being sick with a fever and banging out that play on my first laptop, and I know I felt energized and happy doing it.
Which brings me to the other topic that came up on the phone with my dad. We were talking about my place on the "spectrum" of CF care. This is what must be known about me: I did not go to the doctor every time I was ill. I did not go in the hospital every time I was asked to. I did not, on one occasion, stay in the hospital when I was told to.
Am I a compliant patient? Yes.
Why? I do all of the treatments, exercises, lifestyle changes and etc. that I promise to the doctors to do. 100% of the time.
I do not agree to do things, and then do them 1/2 ass.
That being said, how did I get to this point of 23% lung capacity (FEV1), with the past 4 or 5 years in the low 40s, and yet "look so healthy," have a healthy, active life, achieve what I have in my career, and etc. - and have the energy to take care of myself, even now - while my lungs are failing?
How are you so well, while you are so sick? Well let me tell you this. It is no accident. I have worked really hard for 29 years to maintain this level of overall health.
Some people also might say, "oh you must have a mild case of CF." This is not true. CysticLady and I have a very aggressive genetic mutation of CF.
If I'm at all healthy now, it's because I made it so. There was no luck involved.
I have been empowered over my health decisions for the most part since my early teens. The parenting piece of that is yet another blog post for yet another night. But I know this: my parents did right by me. They raised me to become an independent, willful, funny, honest woman who puts herself first. I am not sure that I was raised to put my medical health first. I know that I was raised to put my whole Self first - for whatever you think of that.
Every single decision that I have made, from what to eat for breakfast to what jobs to pursue, to what friends to keep, and when to stay home and when to go out for dinner, which lovers to keep and which ones to get rid of, what career paths to follow- stem from a basic understanding that I have to put the sum total of my whole Self first.
More on this topic tomorrow as now it is late and you will want to read about this idea in bits. Hopefully, you will not think I am selfish because I plan to spend some time talking about my Self. I think it is a good topic for CG. If there is one thing a cg can do for herself to be healthier, it is certainly to ask herself:
Monday, September 21, 2009
Tonight in an attempt to keep it light here on CG, I will answer a question that I literally get all of the time, "How come you look so healthy?"
Now, of course I was blessed with natural beauty by my CysticMommy, and also schooled in a variety of beauty-upkeep-related funlings by CysticLady. So, they get a lot of credit here. I mean, genetics can't screw you every time. But here are ten beauty secrets I have long-utilized to keep my Cystic Sexy Ways.
1. Bare Minerals makeup. It is every bit as good as those infomercials. This makeup completely changes how I look. My friends do not believe me, they think I don't wear that much makeup. But if I don't wear this makeup for even one day, there is 100% guarantee that a co-worker, friend, family member or acquaintance will accuse me of feeling like shit. I have literally done a sales pitch for these Bare Minerals people at Sephora because I'm such a crazy believer. Try it.
2. Abs and Buns of Steel videos from the 80s. These videos are KEY to keeping strong ab and ass muscles despite your possible lack of muscle mass from CF. The videos are hilarious. The unitards are striped. The women are wearing pantyhose. Check into it.
3. Almay Under Eye Concealer Color WHITE. I put this concealer on very liberally under my eye, but also over my eyelid and in the corner of my eye. I blend it out and then apply makeup over it. It completely covers a multitude of sins.
4. General attention to my eyebrows, waxing and otherwise, not only because I've been told they are very animated, but to open up my eyes so I look so alive ;) Similarly, I curl my eyelashes.
5. Jackie Warner download workouts are completed whenever possible. Similar to those Buns of Steel videos above, Jackie's workout will get done what needs to get done without burning too many cardio calories outside of your cardio workout.
6. I used to tan. If I couldn't tan, I would wear bronzer on my cheeks and nose. This makes me look like I have "a little color." Little known fact: I have no color. Similarly, I always wear a pink-based lipstick. Even though I don't apply it a single time after I leave the house (my beauty upkeep ends at the bathroom door), this gives my lips a "health glow." Little known fact: I have no healthy glow.
7. Oil of Olay Cooling Eye Gel. It cools the bags that would be under my eyes if, say, I didn't use it.
8. Home Remedy Alert: I give myself a mask with a mix of lotion and coarse salt about once a week. I let the lotiony salty mix stay on my skin until it dries and then I rinse the salt off. I must've read this in a magazine when I was like 12. I've been doing it ever since and it helps dry out my face and exfoliate it so my face is as soft as a baby's butt. Little known fact: otherwise my face would be greasy and/or dry. This is particularly helpful when doing IVs that really mess with your face!!
9. I drink gatorade like I own the company. At a rehearsal, I'll drink an entire bottle of gatorade before we even warm up. I make sure to drink another bottle during rehearsal. Staying hydrating keep up the facade of my ever present energy.
10. The best secret a Cystic Gal can give another cystic gal: You are gorgeous no matter what and there is a 99% chance that none of these tips work whatsoever. Though I do really do all of them. And that's not just truthy. That's true!
Sunday, September 20, 2009
I have begun the transplant evaluation process here. Since my lung function dipped so low (FEV1 low of 16%) following the hemoptysis/Pulmonary endometriosis breakthrough bleeding on my birthday, it became apparent that this year is the year for me to get listed.
This is a big turnaround for me. I knew that this debate was coming. Honestly, I thought it was at least one year away. In my mind, I was going to power through the year and make some great new career moves, get evaluated for transplant next summer, decide and see IF I wanted to be on the list (or if that was even further down the line), and yadda yadda.
Instead, here I am.
I have always been a puzzling case of CF. I have had "severe" lung disease for at least, I'd say, 6 years. I had FEV1 in the forties starting in 2003, and dipping into the thirties in 2004-2005 during an exaccerbation and the delayed diagnosis of my pulmonary endometriosis.
I have had FEV1s in the 30s since March of 2008, and in the twenties since last fall. Following IV treatment, I have never gained lung capacity back. Ever. Except for last week (16 to 23%. woot).
My lungs have been in very bad shape, for a very long time. The confusing part is that I lead a very healthy lifestyle and the "rest" of my body is in very good shape. Mostly due to my fear of doctors and what used to be a general distrust for the CF clinic system, along with my belief in putting my whole health, whole body,whole spirit, whole mind first- I avoided hospitalizations at all costs for many years. Whether this took a positive or negative affect on my health can really only be supposed. There are about 1000 blog posts I could write about the spectrum of treatment for CF and where I am on that spectrum.
All of a sudden - it seems to me- I don't have the luxury of deciding my place on the spectrum at all. I need oxygen 24 hours a day, I need airway clearance several times per day, and I need lots and lots of rest just to get by. That being said, the rest of me is the same. I'm still pretty :), I still make bawdy jokes, I still like to drink rum and coke at 4PM on a Friday, I still stay up too late, I'm still bitchy.
I have these overwhelming feelings like, "How can all this be happening, and I'm still me?"
Perhaps that sounds dumb.
I also have moments where I feel like, so what now, do I sit down and write my dramatic letters to old lovers and friends? And who do I call? And what if they don't care? And what am I telling them again?
People react strangely to the news about transplant. Some say, "Well that's good, right?!" and I think dark thoughts like, yeah it's good to have your chest opened, they take a little part of you and put in a little part of somebody else, and hope you live through it after. But how else are people supposed to react?
We are told to be positive. I am trying to be positive. I am mostly feeling positive.
But its words that are the problem. There is no control of the words around this subject. The words, they're flying everywhere.
New Lungs Are Great
You'll Be Fine
It's Like You'll Be Cured
Everyone seems very focused on the good part that is months away.
In between now and then, I have to live through the rest of it.
I also have a chronic complaining problem. I love all of my family and friends and yet every time I talk to someone I feel like I'm complaining about something! I don't want to alienate people because they think I'll complain about them. I'm in some sort of selfish phase (which Cystic Lady, I know, would remind me is just there to keep my alive), where I want everything my way all the time. I want to talk about it when I want to talk about it, shut up about it when I'm done talking, be emotional sometimes and ignore it other times and I want everyone to be a fucking psychic. Is that REALLY TOO MUCH? REALLLY?!! ;)
My sister told me, after her transplant, that several of her personality traits that are less-than-polite, are really just there to give her the strength of will and emotion and spirit to survive CF and transplant.
You have to be one selfish bitch to think you deserve to keep living when you spent you're whole life assuming you were gonna be dieing. So, there it is.
Also, wow these mixes and maxes of medicines really do a number on your brain. And by "your brain," I certainly mean, MY brain. In the last six weeks, here are the meds that can affect my brain, (and by "brain," I really mean, emotional state): Lupron to treat pulmonary endometriosis- completely shuts down my menstrual cycle. "Where did all my estrogen go?" asks my brain (and my boobs); Taking 1/2 of my mood stabilizer because it was contraindicated with one of my oral antibiotics. "Where did all my stability go?' says my brain (and my ankles since the workouts!); Started taking more valium to avoid anxiety at the doctor 3x week. "Where did all my awakeyness go?" says my brain (and my eyes); Started taking prednisose and now tapering off of it. "Where do I put all this energy!!" said my brain, followed by "What the hell is YOUR problem and why does your ass ache?" Prednisone brain is an angry, sore brain; also I am taking another prescribed pill to stimulate my appetite. i don't want to write about it on the internet because it is POTentially confusing to readers. ;) "Where did all my worries go?" and "I think I'll have a third pudding cup!" says be POTentially hungry brain.
My brain is crazy this week. I'm one moody, selfish gal.
PS on a much lighter note, my sister has a great blog tonight about boys and how they are dumb. http://teedablog.blogspot.com/ with guest comments by your own, CG
Friday, September 18, 2009
Here is my schedule from last week, without the med names to keep it simple.
Take IV number 1. (30 mins)
Take inhalors and nasal sprays.
Do nebulizer 1 (10 mins)
Do airway clearance and manual postural drainage/cpt (20-40 mins)
Do nebulizer 2 (20 mins)
Take oral antibiotic, steroid, stomach medicine, special cf vitamin, probiotics and other meds for tummy, blood pressure pills (2), antihistamine pill to counter drug interactions, take vitamin K to prevent bleeding.
Personal Care Routine: Shower inc. more airway clearance, Hair, Dress, Become generally glamorous
Cardio Exercise, then eat more.
Take more probiotic
Sometimes, I would take a nap following my exercise.
3PM: Go to CVS.
Sometimes I would have a nursing visit at this time to change my port needle, and to draw blood work.
Take IV #1 (30 minutes)
Do nebulizer 1 (10 mins)
Do airway clearance and manual postural drainage/cpt (20-40 mins)
Do nebulizer 2 (20 mins)
Take more probiotic
5: Take IV #2 (60 mins)
Talk on the phone with CysticLady and CysticMommy
8: Take more probiotic, cf vitamin, tummy meds, inhalors (2).
11: write my blog :)
Take IV 1, 30 mins.
Final airway clearance. (10 mins)
Get ready for general nn including sinus rinse. ew.
Also: at waking, noon, four, eight, "nn" and after exercise, I would take my blood pressure, check my oxygen and pulse.
Other medical things that happen during the week:
One appointment at the CF clinic (or three:); calling the oxygen company to get needed supplies; calling the nursing coordinator to schedule all this sort of stuff.
It's a busy job, but I have to do it!
More tomorrow, loyal readers! Love, CG
Wednesday, September 16, 2009
A little known fact about CG is that I came of age in a house run by a woman, my CysticMommy, who worked for a lingerie company. I was the only seventh grader to wear a hot pink bra and thus began a life of altogether too much attention to underwear. CysticLady shares this passion handed down by CysticMommy, and writes, I like underwear, to me, as I sit here typing.
I have come to understand that my current state of being can be easily assessed by looking into my underwear drawer. All a mess? Thus, I am a mess. Empty? Thus, I am empty. All neat and colorful? Ah. Thus and thus and thus.
Tonight, in an attempt to put order to the chaos around me, I decided to spend time doing one of my very favorite CG things to do: organize and categorize, prioritize and synchronize my underwear.
Thus. I have learned:
A few weeks ago, I was the ball of white in the back of the drawer.
Now, I am all the way to the right. Basic. Functioning. Solid.
Soon, I will back in the middle. Colorful. Content. Expressive.
After that, further left.
Comfortable. Beautiful. Understated.
And then, well, I'll really be back.
There are a few other messages in the image but I"ll leave that to your own discretion.
So I ask, CG Readers:
What does your underwear drawer say about YOU?
PS. Tonight's post is double-whammy. I finally decided to upload a video that I had delayed, below. Watch it if you so desire. Goodnight from Cinderella-CG. It is Midnight! POOF!
Then I downloaded it onto my laptop and watched it again and was really quite astonished to watch myself in nearly life-like-size, and to see and hear how out of breath I sounded even though I was wearing my O2 and sitting.
I wondered, "How long have I sounded this way?" In my work, I have the opportunity to hear my recorded voice fairly regularly, and I tend to have a good ear for how my projected voice sounds while I am working in rehearsal or on a mic. (I admittedly have no attention to how my voice sounds when I am not working which is one of the many reasons I have so many vocal problems . . . ) anyway . . .
The long and short of it is that I didn't end up posting the video because I did not like seeing the muscles in my neck and chest heave, seeing my shoulders rolled in, and seeing my gulp air in between words. And I wondered - how did I come to sound this bad so quickly, and how did I NOT notice?
It's only been a week since I shot it. I don't know if I'm still doing this.
But I know that one day I won't have to do it, anymore.
PS/Disclaimer: Even though I'm out of breath here, yoga really IS good for you and your lungs and my living this many years with an FEV1 of 46% or less (Currently 23%) is only proof of that. So, DO do yoga.
Tuesday, September 15, 2009
well there we go.
today was hard and i went to the doctor and also i brought my friends one was human and one was pharmaceutical and both made passing the time easier except for that i was still bitchy sometimes on accident and playful sometimes on accident which really isn't that much different than the way i am in real life
like not at the doctor
it is weird that my type type typing fingers had to spell
twenty thousand times they could not get it right
so i went the doctor and brought my two friends t and v
and we had a lot of chatting and i told them i was collecting advice
i am like a tollbooth taker of advice and please would every one throw a coin in and also
don't forget that i am a monarchy
i make all the decisions
but you can't pass by without throwing a coin into the cup of
what to do about me
so i collected lots of coins today and that is a
metaphor that works so maybe i'll
write a poem like that tomorrow
and then i went home from the doctor with my full bag of coins
and stopped to make some art
or talk about hey do you want to make some art
on the way
which was good and i had my dance pants on and all
you can still wear dance pants if you have a nice ass
and an oxygen tank
it's ironic and fabulous
especially wearing pink
and i talked a little talk about hey let's make some art
and also collected a coin or two from a very nice man who says
you know the thing about art is you could always say
well i was just making some art, you know
and then i came home
called my mother
and my father
and my sister
and not yet my brother
because with all this news there was really no news to report
and he mostly has time on the weekend
he is busy collecting coins of his own ;)
Goodnight from my brain to yours,
Monday, September 14, 2009
CFF Fundraiser, "Unleash Your Story!"
Congrats, Team CG!
About 1/2 a month left! If you would like to donate to the CF Foundation as a thanks to me for reading this blog, or you know, just for the karmic boost, you can visit my fundraising homepage HERE .
PS. I republished the poem from last night, "Once Or Twice A Day (as needed)," below...
Quality post to follow . . . !
Sunday, September 13, 2009
Falling down the rabbit hole
Tumble down the rabbit hole
Colored little rabbit hole
I love my home
The place where I go to know
I'm all alone.
Sleeping well and
No one knocks.
And warm meals too
Much to do.
Lower down the rabbit hole
Reviewing all your notes and papers
Lovely little rabbit hole
I call my home
The place where people come to see
If I'm alone.
And sweaty shirt
And tummy's hurt
That looks gross
Might just eat dirt
Living in the rabbit hole
Down Down Fall
Wanting to climb out again
Once and for all.
I continue to wonder what is going on with this poem. I took it down from the blog to put it into a new format, only to realize, no, I like the format but not the order, the direction of the poem but not the place where it ends up, and I think it is too long but I haven't written a good last stanza yet so I keep writing more til I know what is going on, with, this, poem.
It seems to be a silly poem, an Alice in Wonderland poem, a dark little poem. I have no idea what is up with it. A study in rabbit holes.
Friday, September 11, 2009
Ten O'Clock is my favorite time of night. So quiet. Too late to do anything productive or useful. Too tired to do anything important. But early enough to still be here, at the keyboard writing to you.
Lately, my readership has grown. STAT counter has individual IPs at over 3500! That's crazy. And daily readership is about 135. GREAT! One problem: I've gained a lot of personal readers and friends reading, but lost some of my core CFers. I must gain them back. Dialogue with the CFers is the reasons I started the blog!
I have decided to revert my blog to its most original intentions: to be a magazine-format blog where I wrote longer posts that covered topics of value to the average 20-30something cystic gal (or cystic fiBro). My health experience is changing right now, yes. The topics I cover may end up being completely different topic than those I thought I would be covering when first I sat out to do this blog in June, yes. But the blog will remain in tact. I want to be a writer on this blog, and not a patient. A writer that writes about patient issues. So there you have it.
Therefore, forget all that huggamujuggammu that I was writing about "this is the point," "don't get offended if..." -whatevers, I say. The blog is back to it original form and mission and no one will get offended or overly personal because the blog'll go back to being a magazine. Not my diary or whatevs.
Sigh. So that being said. It is still of value, in my EveryCysticGal way, to share the Basic Info of Me and also the Meds I Take, because that is great information for you to have, should you be reading or emailing CG.
Goals of "Cystic Gal"I Want This Blog To Be:
1) A place to get feedback
2) A place to e-meet people
3) A place to express my story
4) A tool for dealing with my anxiety
5) Funny and Balanced.
I Don't Want This Blog To Be:
1) A personal diary
2) A rant page
3) An oversimplification of CF, either positive or negative
4) A place where I judge other CFers' coping mechanisms or circumstances.
Peace out, y'all. I've got a lot of stored up writings in here that I've got to get out! Because I AM still raising money for the Unleash Your Story campaign. I've got to write those good words n'stuff :)
Thursday, September 10, 2009
"CF"- Cystic Fibrosis, as in "I have C bleeping F."
"CFRD"- Cystic Fibrosis Related Diabetes, as in "I can't believe that because of CF, I know have CFRD."
Endometriosis- Uterine (as in, uterus) tissue growing outside of the uterus itself. (no funny example sentences available.)
"FEV1"- Forced Expiratory Volume over 1 second: during a pulmonary function test (PFT), a patient's ability to blow out a volume of air in the first second of exhaling. An important measurement of pulmonary health. As in, "What's your FEV1?" or "My FEV1 is 16%."
"FVC" - Forced Vital Capacity: during a pulmonary function test (PFT), an important measurement of pulmonary health. As above.
"Line" - an i.v. line. As in "It took them three attempts to place the line" or "My line hurts."
"nn" - CysticGal or CysticLady on twitter, text, or facebook, for "nightie night" or "goodnight," as in "I have to nn, call me," or "nn u weirdo."
"O2"- Chemistry and everyday abbreviation for oxygen. As in "How's your O2?" "Do you have enough O2?"
"PICC"- Peripherally Inserted Central Catheter: a central line for the delivery of i.v. medications, typically placed in the arm, accessed outside of the skin. As in, "If I have to get another PICC I will go crazy."
"PFT"- Pulmonary Function Test: a test a pulmonary patient completes where s/he blows into a tube. Various measurements are taken.
"Port"- Port-a-Catheter: A central catheter line for the delivery of i.v. medications. Usually placed in the chest of the patient, accessed under the skin.
Pulmonary Endometriosis- Growth of endometrial tissue outside of the lungs, but inside of the rib cage.
"SAT"- abbreviation for "saturation," referring to "oxygen saturation."
Transplant- In CF, a patient can be referring to a double or single-lung transplant, a living donor lung transplant or a heart/lung transplant (among other organs).
"tx"- an abbreviation used for Transplant. Similarly, "post-tx" or "pre-tx" means, "pre" or "post-transplant"
Wednesday, September 9, 2009
Tuesday, September 8, 2009
I grew up with a sister with CF. (CysticLady)
Yesterday I heard this is called having "Cyster Fibrosis."
I've been trying to write a poem to talk about what it is like to grow up with someone who
looks just like you
talks just like you
thinks just like you
like any other sister
but who is also carrying around
all of this.
I'm literally going to go dig in the basement for a journal.
I'm going to start looking there.
In the past.
It was good to hear her ask me a few questions that I had not asked myself yet. It was good to hear her listen to my crazy mix of spiritual beliefs and not think I was a weirdo or try to get into some sort of religious debate. It was just good.
If I have no words to say tonight, perhaps I will have some words for later?
I had a great day today. I was on schedule with my meds, I did some crazy good yoga, and I ate a lot of foods.
Monday, September 7, 2009
PS I will be following up on last night's post, but implore you, if you are more into reading than watching tonight, to read this wonderful response written by "Breath Sentence," who realizes that if she took a page out of the CG book, her abbreviation would be BS. hee hee. This blog post by BS is really not any kind of BS. It's some GS- GOOOD STUFF ;0)
Sunday, September 6, 2009
I am up late and thinking about a lot of things. I was just looking at my childhood best friend (S-Bestie^)'s blog about her artistic life. There she is, living there, a fabulous artist in her own right. I am here, living all the way over here, and thinking I'm some sort of artist too. But I never have made art with her, and yet I think her visual art relates a lot to my theatrical and written art.
I am also thinking a lot about news and refer you, CG Readers back to a post written by the famous CF Husband on his blog, about the difficulty of having these big talks about the big moments of our lives. How do we find the energy to have these big talks? When do we find the time? How many days will go by that I have to have a big talk?
I wish people still did not have computers, I could write letters to those I really love and not have to worry over the controlled release of my own information on the internet. Something strange to say, I guess, from someone writing a friggin' blog. But this would be a problem, blog or no. Even if I didn't have a blog, if I didn't have a facebook, if I weren't an email junkie- everyone else is. I have to know that as I start to share my health situation with people- it's gonna "get out there" on the interwebs to some people before I've had the chance to have the big talk with them.
And I just have to hope they don't get mad at me.
That's all tonight folks, I spent my time updating my shiizzzzle.
Friday, September 4, 2009
Most annoying response to your coughing, from a stranger... (please pick 3)
"Would you like some water?"
"Don't cough up a lung"
"Here's a cough drop"
"Are you ok?"
"Do you have Swine Flu?"
"Don't die on me"
"Sounds like it's time to quit smoking"
"That sounds like Bronchitis"
"Something go down the wrong pipe?"
(Getting up and sitting somewhere else)
In other news... because I missed a post last night, here is my direction to another blog, if you need to get a dose of Cystic Gal without me:
This is a blog by another cystic gal that I find to be a lot like me in her cysterly ways. You may find this blog informative if you find mine to be!
Thursday, September 3, 2009
1. My birth
2. My parents, CysticMommy and CysticDad
3. My siblings, CysticLady and CysticSibling
4. My best friend, S-Bestie.
4.5 My many mentors growing up and currently.
5. My laugh and each of the moments when I have had reason to use it.
6. My sense of humor which is an indirect gift from God, given to by through my Cparents, my grandparents, my aunts and uncles, and my Csiblings, and S-Bestie.
7. The town I grew up in.
8. My cat, B-Kitty.
9. My dog, Gracie, who has passed. She was a gift from God to my whole family.
10. My creativity.
11. My writings. The best things I have ever written just come to me. I do not even feel that I own them sometimes.
12. There is one thing that is a gift from God but I'm going to keep it private. But H-Mama knows what it is.
13. The men I have truly loved and the feeling of falling in love with them.
14. When I go to heaven or get to be an angel or am reincarnated nicely as a cat or something, that will be a gift too.
Conversely, I do not think the following things are gifts from God or the Universe. I believe that God and the Universe were obviously involved or aware of these things, perhaps they were discussed at some sort of "crappy things for CG" meeting, but I do not believe the following things are gifts, per se. (These are in response to the above)
1. The way that I will die, whether hit by a mack truck or otherwise.
2. Cystic Fibrosis
3. My sister, CysticLady, having to have Cystic Fibrosis TOO. Nor my brother being born in the middle of two CysticWomen, when he could've been born between two normal Women and that would've been enough for him- jeesh.
4. The friends I have lost over the years.
5. The people that don't like my laugh, though it is obnoxious. If you don't like somebody's laugh, you got to think about your attitude. Lighten up people. Obnoxious laughs (like mine) are double funny. You can laugh once at the joke, and once at me, and I won't even know it! I always secretly wonder if that is why people laugh so much when I say stupid things.
6. Ditto on people that don't like my sense of humor. I have found that they are usually humorless people in general.
(7-9. Nothing bad to say about my hometown or pets)
10. The inappropriate parts of my creative thinking and sense of humor, and my lack of control of said creative thinking and the expression thereof.
11. The fact that very few people read the things I write. I mean, God did not gift me a publicist or anything.
12. In terms of number 11, it is not a gift from God, always, to have this gift from God. (oooh....mysterious).
13. The men I have truly loved in vain.
14. I am not delving into this one. No way, man. Not on a blog. God could read it!
I don't think CF is a gift from God. I think it is a challenge from God, sent to develop my gifts and the gifts of those around me.
Food for thought...
Wednesday, September 2, 2009
I fly through the sky though heavy with wings like steel, never tiring.
I land upon the sea perched on delicate feet, never sinking.
I plunge to the deepest depth of the sea, never gasping.
I do not need to breathe like you.
I do not need to breathe.
I am a green white pink white purple white dragon.
I float into clouds and am invisible.
I climb among trees and am a giant.
I balance on the mountain top only to witness.
I do not need to rest like you.
I do not need to rest.
I am a mythical, imaginary, remembered and forgotten dragon.
I do not fly among you, but I would.
I may not fly forever, but I could.
I will not fly in silence, though I should.
I am not defeated by you.
I am not defeated.
I am a dragon.
(c) 2009 Mary ElizaBeth Peters
I am a green white pink white purple white dragon.
I sneak into clouds and am invisible.
I climb among trees and am a giant.
I perch at the top of a mountain only to see.
I do not need to rest like you.
I do not need to rest.
I am a mythical imaginary remembered and forgotten dragon.
I am not real, but I could be.
I am not of this time, but I would be.
I am not defeated, and I won't be.
I cannot be defeated by you.
I am a dragon.
Tuesday, September 1, 2009
by CG et al.
2. "Don't you go dieing on me!" (Ronnie/RunSickBoyRun)
3. "Will your grow out of it [cf]?" (Deb Wilson)
4. Complete silence in the room just as a coughing fit starts.*
5. Why are you still working? Couldn't you just, like, go on disability or something? I would never work if I had what you have.**
6. You have such a bad attitude about your illness. I saw this one interview with Michael J. Fox . . . he has a great attitude.***
7. So you're better now, right?****
8. Have you taken your [son/daughter] to the doctor? / You should get to the doctor! That cough sounds rough!*****
9. (Dramatic sigh, bows head to the right, makes a pained face, whispering) "How are you feeling?" (clutching chest)******
and tonight's CG specific #10. Thing a CG Hates to Hear . . . (drumroll)
10. Do you go to church?********
4*This is the CF equivalent of the moment at a party when someone tells a dirty joke and the whole party is quite just as the person says something distasteful. Which a) kills the otherwise funny joke and b) is embarrassing for all.
5**In my head I always think, yeah, I know, that's why I come to work all the time and you're absent every Monday. There are unemployed people in the world! Why do you get to work here? (I have thought this through the years, so the time/place are not important)
6***If I was on the Oprah couch, I'd have a good god-damned attitude too.
7****No matter what people will tell you ahead of time, if you answer this question with anything other than "Well, YES!" it will make someone extremely uncomfortable. They might cry or hang up on you. I'm serious.
8*****This question always seems to come from someone who is simultaneously exhibiting some unhealthy behavior of their own: either drinking, or smoking, or maybe a Big Gulp is involved. I always try to bite my tongue. I usually succeed.
9******I thought I was the drama teacher! Please don't comment and yell at me and say, "they are just concerned. you are too cynical, CG!" This sort of overplayed antic only comes from a Rachel Linde type of persona. A clucker of henhouses. A lunch table whisperer. An email forwarder. That's all I'm gonna say. Well -- and that sincerity is easy to read. Drama is great. I love it. It is not ever, ever sincere.
10********yes, i do. but thanks weirdos for implying that the reason i have CF is because I'm some sort of godless commie.* i'm sure there are plenty of atheists without CF and this Catholic gal's a Cystic Gal. So there! *Also, commies may not all be godless and godless people are certainly not all commies.
!This is my first "Unleash Your Story" post! If you read this post, you owe the CF Foundation $2! But don't pay yet. You will pay later....bwhahahahahah, when I am done in September!!! To see my pledges page, click HERE!