daily daily cha cha cha

I'm going to try to get back into the habit of daily posts even if I think that I don't have a lot to say and even though my energy level is poo poo pooey lately. I had a great thanksgiving and even enjoyed a tiny day of beauty with my mom on saturday. We got manicures and went for pizza and bought a sweater for my cat B-Kitty who is always Cold because she is Old.

I wonder if I haven't been doing as many free flowing posts because now I know that a lot more people that I actually KNOW in real life are reading my blog. I had 600 unique readers last week and 200 of them were NEW. Holy pajoly, that's a whole lot of new readers. But then again if they're here reading it means they want to know what I'm thinking even if I'm thinking random thoughts.

I'm getting more and more ready for the tx everyday. I've been practicing the relaxation rituals and plug in my ipod every night so I can bring my songs with me to the hospital. I'm getting sick of waiting and wonder how many other people are there in the region with my same height and weight and state of illness. What if there are a lot? I don't think there could be a lot.

My family is settling in on all their plans to come here for Christmas and I am so very excited to host them. I also wonder, will I have my new lungs by then? I've been having lots of visitors over here- well not a lot of different people but a steady stream of the close close people and that is ENOUGH. My muzzy and I are getting along so very well. What else to write about? I don't know.

I'm getting a mssage today. One thing the BiPap does that I can't seem to get around is that it makes my neck hurt because the straps go around my head and neck and if they are loose the mask moves too much and annoys me but if they are tight they tend to pull on my neck overnigth and pooooo it hurts.

Oh well I must get a massage. Life is so hard.

:)

Tonight perhaps a real stream of consciousness post and tomorrow perhaps a poem to please K-Poet. Or did she have another pseudonym?

I can't recall . . .

Pic of the Day

Number one reason that being at home is better than being in the hospital.

More later...

Cluck Cluck Says the TBird

Ho Ho Ho! Merry . . . Thanksgiving!

2 lists: My personal Top Ten List of Things to be Thankful For, and
My CF List of Things to be Thankful For

Ten Things I'm Thankful for This Thanksgiving:

1. My family! They are truly always there for me. When I need them, they literally come running, flying, driving to get to me. My Dad would move a mountain to help me and my mom would beat up a WWF wrestler with her bare hands if she thought is was necessary for my health. My brother and sister are the best humans on the planet and accept me in all my different ways of being.

2. My friends! I am blessed to have a lot of friends. I am even further blessed to have a handful of friends that I feel so close to, I feel that they are family. I have been directed toward people who fit with me, and I seem to fit with them, from the moment I meet them.

3. My cats! I don't care who thinks it's silly, my cat Beckett has been by my side for 10 years. She has often been the only one with me in some very dark times, and she has also been with me during times of great joy. She literally helps me get out of bed every day and is a big inspiration for me to get my transplant, get well, and come home. My 2nd cat, Samuel, is also a love bug and reminds me to live more cautiously (as he is afraid of most... everything.)

4. My career as a drama teacher. When I was a kid growing up, because I had read Alex: The Life of Child, and then because I lost a godbrother when he was in college, and then because it became easier to read medical studies online - I, like most CFers, often thought, "maybe I'll live 'til I'm ____." There are many days when I'm driving home from rehearsal in my car, to my home that I rent with my very own money, to cook dinner and watch a show and etc. - that I am amazed that I have made it so far in my career and with my life and that I'm like, "Hey wow, look at my life. I live here. I'm doing this! Cool." I am thankful that all the things happened that brought me here.

5. My writing. I am grateful that writing is an outlet for me, for the better or the worse and that all of you people are willing to read it whether its funny or not, complaining or not, swear words or not, poems or not. Yesterday I found my blog mentioned on a site listing inspiring blogs for Chronic Illness and for a moment I thought, "Really?! All I do is bitch and moan on my blog!" -so I'm grateful that all my bitchin' and moaning and some jokin' is inspiring :)

(Ok, the next 5 will be more practical thanks...)

6. I am actually ironically grateful for my BiPap machine that boosts my energy and is allowing me to be at home and not in the hospital.

7. I am grateful for the Jelly Belly Jelly Beans that my friend E-Teach brought me.

8. I am grateful for Pudding Packs that I consume daily.

9. I am grateful for text messages as they are my fave mode of communication during this pre tx time. No talking!

10. I am grateful for my penguin flannel pajamas that CysticMommy bought me.

My CF List of Things to be Thankful For
(some overlap)

1. My BiPap Machine
2. Prilosec
3. TOBI
4. Pulmozyme
5. My great doctor, Dr. U-Bird and nurse N-Pregg
6. My great social worker, S-Happy.
7. The treadmill I saved to buy that allows me to exercise every day.
8. Prunes.
9. Gatorade
10. NAPS!!

What are you grateful for? Happy Thanksgiving! Have a great day!!

Love, CG

Newsflash!

NEWSFLASH!

"Cystic Gal" named number 9 of "100 Inspiring Blogs for People Affected by Chronic Illness" by

The Latest Advancements in Medical Technology and Healthcare

As far as I can tell, this site is kinda random. But I'm glad to be mentioned!! WOOT WOOT!

Also, my CO2 is back to my baseline of the low 70's so some BiPap relief is in sight. Also, a good follow up meeting with the tx team today. More waiting...nothing's changed...I'm still super sick but doing well. Ha?

More turkey-related-news tomorrow!

GOODNIGHT!
CG

You Had Me At Hello

I'm just writing tonight to say hi and touch base with the readers and real life friends/family/supporters. Things are going well here. I spent 5-7 extra hours/day on the BiPap than my normal 9 hours of sleeping, for Friday through today, Monday. I'm going to try to keep it up until they repeat my VBG on Wednesday to check my CO2 levels. I hope they go down after all this! If not, I'll be really sad and blue/ angry and red. Ha? Spending this much time on the bipap gives me a lot of time to sleep or think. It's awkward to do most anything else for too long on the biPap. I am typing while on it now, but the weird one-eye-at-a-time vision will get old by the end of this screen shot. I am getting more and more emotionally ready for the transplant, I think that's good. I've started to have some sort of dysfunctional thinking like, "Maybe if I stop swearing, I'll get my lungs tonight!" (bargaining, they call it). More than anything, I want the surgical part to be over so that I can stop worrying about it and thinking of new ways to meditate its reality out of my head and replace it with other visions.

Other than that, my Mom and I are getting along very well despite the fact that all of the days run into each other. We are fighting the boredom with all we have. Every day seems the same to us - exercise, meds, biPap, naps, food, television, an errand or two, an appointment or two . . . et cetera. It's getting boring.

I am still having a hard time doing a lot of things that are easy for people. Showering and the morning routine, for example, takes about an hour no matter how I try. Getting ready for bed, similarly, takes a long time. Getting ready to leave the house is a big to-do. Most things take a lot out of me. Even though I'm bored around here, my days are very full just getting the day done with. And it does take a lot out of me to have people in and out of here visiting me. I love to have so much support, but its getting difficult now that some of my friends and colleagues seem annoyed that I haven't seen them. I know it's been a long haul here (short, actually, compared to a lot of my CF bloggies and their journeys to transplant), but as the weeks go by it doesn't change the fact that

I. Am. Tired.

EVERY DAY.

I feel like 90% of people understand that, and 10% of people are pestering to see me, hear from me, etc., more than I can deal with. I enjoy the emotional support, but the more I feel pressured by someone, the less likely I'm going to ever even call them back. It seems like a clue that they don't really get the enormity of what's going on around here. Heck, I haven't even seen my beloved T-Money in two weeks, I think! I actually got an email yesterday that said, "I've been driving by and it seems like you're always home, can't I come over?" and I wanted to be like,
"Are you a weird stalker or something? If I wanted you over, I'd invite you."

So, I want to say thank you to all of my friends and colleagues that are supportive and wonderful and let me take the lead on our communication, and who read the blog and keep in the loop and send an email or call but don't guilt me into calling back. To everyone else who feels like I'm ignoring them, I'm sorry, but you're sorta right. I'm not ignoring you because I don't love you. I'm ignoring you because I am tired. Every day.

Love,
CG

Health Update and Fun for BiPap Use

Weird Greek Model Style Porcelain Man Wearing A BiPap Mask.
Perhaps he has CF and high CO2

So things were sorta complicated this week, as I had two good sessions at Physical Therapy and was doing a good job of home exercise and meds and all that, as well.

Now, remember that when I was in the hospital in October, I ended up in the hospital because of hypercapnia, or high carbon dioxide levels, that were causing me to have severe headaches, delusional and illogical thinking, and a desire to sleep all the time (which compounded the problem). Eventually, this caused acute respiratory failure and I had to spend 5 days in the ICU reducing my CO2 levels using a BiPap machine, or assisted ventilation, to help me breathe more deeply and also clear my "used" air completely so that my CO2 levels would lower. I have continued to use the BiPap machine at home.

Okay- so then this Thursday, at Physical Therapy, I started to get the CO2 headache during exercise. The headache is a very specific, sudden, painful kind of headache that usually wakes patients up from sleep (like it did with me). It was striking me during exercise, which is odd. I went to the doctor that day, and my CO2 level had raised in one week from 63 to 86- not good, and most likely responsible for my headache. So oh no!

To see if this was a fluke, Dr U-Bird let me go home for a night and come back on Friday to see if my CO2 level went up or down overnight. Thankfully, it had gone down a bit to 75- good because the BiPap helped it go down, but bad because it showed that overall, my CO2 was increased from the week prior.

So there was a big debate and I was allowed to go home for the weekend with a change to my BiPap settings, to make them stronger, and with my CysticMommy to pay diligent attention to me. I will repeat the test of my CO2 level next week.


In the meantime, my oldest friend, S-Artee, is here visiting! I am supposed to stay on BiPap "as much as I can." Oh no! S-Artee is my very best friend for 29 long years, and I haven't seen her in at least 5 years. She is here to spend wonderful time with me!! We were, you know, planning to TALK during her trip. One problem when you're on the bipap, is that it is hard to talk through the mask. It is possible, but you have to talk really loud inside the mask, to be heard at all outside the mask. This is one reason that I burnt my voice out so badly in the ICU. I did not realize that I was yelling inside of the mask every time I tried to talk to someone, to project my voice through the airtight plastic.

This brings us to the weekend's theme: Fun on the BiPap. One fun thing you can do on the BiPap that involves little talking, is joke-telling.

Exhibit A: WARNING: This video contains cackling.



Exhibit B: WARNING: This video contains me wearing the BiPap which increases the pudginess of my face:) I am not this pudgy-faced in real life. :)



YAY!! Tell a lame joke with your best friend today!!

Love, Cystic Gal!

PS. I also have uploaded another video to count for yesterday's post. See below!

Vid with Me and S-Artee

Watch
this
video by clicking HERE!

Updates, Streams of Consciousness, and Open Letter to All You Peeps- OH MY!

Hey everyone, So I've been out of the hospital about a week and a half. That seems crazy to write and I even had to say to CysticMommy, "Really only a week and a half?" - so much and yet, nothing at all has really happened. Here are the deets:

The first weekend home, one of my oldest friends C-viddie^ made the long journey from our hometown to see me. This was only one day after I got out of being in the hospital for a month, so he was thrown right into the world of IV meds, nap-taking, BiPap wearing, and generally energy-less activities. Even so, we boldly went to see Where the Wild Things Are, which I really enjoyed! It is right up my drama-teacher-ally and I love the book. It was a puppetty-muppetty good time. But exhausting!! The rest of the weekend was quiet and we had a good time. He is one of my closest pals and I felt very thankful to have him come see me before my transplant. I canNOT wait to see him after.

Then next week I was able to stop my IVs because it had been 30 days straight, plus the 30 days prior that had only ended in September. Time to give the bod a break! Sadly, my Pulmonary Function Tests (PFTs) had not improved from the day I entered the hospital on 10/12. That really disappointed me. My FEV1 is 15% still, even after the month of meds and all. I am trying not to be too disappointed in this, and realized that the name of the game is to stay as healthy as I am now until I get my transplant.

I also started Pulmonary Rehab and I love it! I am doing all sorts of exercises with a trainer who is helping me learn how to breathe appropriate with such a little amount of lung capacity. I have retained a lot of the strength from before my hospitalization, in some areas like my legs. In other areas like my arms, chest, and abdominal muscles ("the breathing muscles"). I am learning to fight my ever growing instinct to breathe really shallowly. So yadda yadda yadda, I'm trying to get my abs of steel back and I've been approved to work on my buns of steel on my own time. Jackie Warner would be happy.

This past weekend, I had another oldest friend, M-Lobby^, come visit me. We made a great dance video, and watched an obscene amount of Bravo on television. We thought that our activities of sleeping in late, eating toasted cheese sandwiches a mother made, and eating chocolate while watching stupid television and occasionally talking about high school gossip and boys, was not altogether that different than what we have ever done together. So that's good. Nothin's really changed. M-Lobby has offered to come here after my lungs are here. So I look forward to that.

My Muzzy (CysticMommy) and I are having a really great time. Every morning I awaken to the sounds of my Muzz on the treadmill. I believe she does this only to be able to gloat over me until I, later in the day, exercise. Then, we usually have breakfast. Muzz does an amazing job of changing up the breakfast options to increase the likelihood that I will ever eat breakfast. Then it's meds, chest p.t., exercise, bipap-nap, meds, eat, daily guest, get ready for bed, sleep. In between that we have lots of cat-related comedy and doctor's appointments and prescription filling and high CMommy and CGal fun.

And that's how the days go. We lose track of the dates really easily and didn't realize that "OH MY! Thanksgiving is NEXT WEEK!" until today.

That's how it goes around here.

Still waiting for lungs! One month on the list, as of tomorrow!

Thanks to everyone for your thoughts and prayers and kindness and support. It means a lot to me. Especially you bloggies and twitter-readers - I never knew how supported I could feel by other CFers that I have never "met" that I yet feel that I now know.

Goodnight and more soon, maybe even a stream-of-consciousness post, or a poem!!

Love, CG

Weekend Fun: Tips for Dance Parties

Why It's Great to Have a Parent's Help

Many of us Cysters and Fibros grow into adulthood, and then find a time in life where we must rely upon our parents to take care of us. This can take an adjustment for both parent and adult child, but when necessity creates this situation, it is overwhelmingly a relief by the time it begins. For those of you finding a time in life when you need a little help from mom and dad, I offer you this top ten list to urge you to go ahead and accept some parental help.

Top Ten Quotes of Cystic Mommy
When Caring for Cystic Gal

1. "Okay- your laundry is out. of. control." Let's face it, you haven't done laundry in a long long time. Parents have a healthy obsession with laundry and will make short work of your stinky pile.

2. "Mmm. Doesn't this look gooood?" It's much easier to pack on the pounds if someone else is setting food down in front of you and pretending it is the best thing ever.

3. "We can watch whatever, I'm not really paying attention." Lonely no more! When you're ill, you spend a lot of time at home. What TIVO does not provide is a television companion! Watching hours of television does not seem nearly as pathetic when you can chalk it up to quality time with mom or dad.

4. "Okay where does this go? . . . Okay, well, I'm gonna put it over here instead." Parents have a unique ability to tidy things that you thought were just fine the way they were. As long as you keep an eye on mom or dad, most of their suggestions are improvements.

5. "Time to get up, do you want me to bring you some coffee . . . yum . . . coffee!" When you're sick, you have to get out of bed early to do your treatments. Parents have a unique ability to naturally wake up early and harass you into taking care of yourself complete with force feeding your breakfast foods. Thank goodness.

6. "You know what would be good? A nice hot bath!" Parents, moms particularly, have a wonderful ability to pick out comforting activities that will make you feel better when you are too tired to think of them and just want to lay around being miserable.

7. "You'll feel a lot better if you do the treadmill first." Parents are great at forcing you to exercise and watching you to make sure you don't, like, pass out or anything.

8. "We'll get it at the CVS, man!" Moms loooove the CVS. At least, Cystic Mommy does. There is nothing my Mom does not seek to purchase at the CVS. She has developed this ability following years of picking up meds for me and Cystic Lady, and learning the ins-and-outs of exploring the CVS for all her needs to save a trip anywhere else.

9. "Let me just take out the garbage first." Parents are obsessed with taking out the garbage. They take out the garbage before its full, at just any old time for the pure parental fun. This is great for CFers who need to fear the garbage germs.

10. "I love you." The best reason to let a parent take care of you, is because your parents love you, and you love them. Aww!

-CG

I Bet You Think This [Blog] Is About You

*in the post below, the name Jerkface has been used to substitute the identities of four different individuals.

So I have this problem. Every time that I deal with romance on this blog, all of my exes think I'm writing about them. Which is weeeird because a) I have a very detailed disclaimer dealing with this issue and b) I have written very little about romance on this blog and even put CysticLady to the task of covering romance during her guest posts (also because she is a romance-maniac right now). I got this email the other day that accused me of being all angry at one of my exes, which is weird, because, you know, I've had bigger fish to fry these last six months, you know? Not once sitting down in the ICU trying to figure out how to get from one end of the bed to the other without my oxygen dropping to 70, did I think, "Oh I am so angry at that man!", nor when being checked for hypoxia and struggling to pick out the commonalities between an apple and an orange did I say, "Now wait, let me tell you about [Jerkface]." And yet, oy vay, I get accused of man-anger when all have is lung-anger since August 11th.

And I have this other problem. A lot of my exes who are not particularly in my life anymore are writing to me and saying they are praying for me. Fine, pray away. I like praying. I do it every day. But it makes me wonder, if we cannot be there to support people in the real world, is it appropriate to try to affect them in the spiritual world? Perhaps, but I'm not sure. I also think this conundrum speaks to a great problem I have always wondered about with CF, which is the pressure that I have always felt to stay in contact with people only because they are curious about whether or not I am still alive. I know that sounds crass, but it's true. Perhaps other people have experienced this passing thought. For me, this means that I invited [Jerkface] to make peace with me before my surgery and he basically said, "nah, but I'm prayin' for ya," which is, you know, juuuuuust like making peace. ?

And then the other problem, the ultimate ex-boyfriend problem - that exes never believe that their exes can possibly be happy without them. I don't think that [Jerkface] can possibly be happy without me, mostly because he used to tell me that all the time. [Jerkface], in turn, cannot possibly believe that I have been fabulously happy, besides this whole my-lungs-are-dieing thing, mostly because I used to tell him that all the time. What fools we both are, as I am most definitely happier now than when I was all involved with [Jerkface]. Still, it takes a godly concentration to hold my fingers back from the computer where he writes, "I hope you're happy," and I want to write, "I'm fucking happy, I hope you're fucking happy too, jerkface!" If anything, these last six months have shown me that romantic love is not the highest thing on my priority list at all.

Watching things fall out of my life as I got sicker, and hoping for them to drop back in once I get well, I realize that romance is lower on my priority list than I ever expected.

Breathe in Peace, Lauren

Tonight's second post is to share that one of our bloggy friends Lauren has passed away.

http://livingwellwithcf.blogspot.com/

I write this with a heavy heart. Heavier still because Lauren was my age, and as I read through her recent posts, she was was going through some of the same challenges that I have faced in these past few months while trying to get on the list. All of our prayers to Lauren's family and peace up to her in heaven. Now Lauren can breathe freely.

Love, CG

Hospital Haircut!

If you're in the hospital and feelin' sorta frumpy, try getting a haircut! I've been here for a month, and before that, I had only been out a few weeks! I feel like I've been here since August and my hair was suffering! Until today, I got a hairstylist from a shop in the hospital's neighborhood to come to my room and spruce up my 'do:

Word on the street is I might get out of the hospital tomorrow! YAY! I will start a pulmonary rehab program next week, and spend some much needed time at home with my cats and my Mom while wait to get the call to come back in for transplant surgery!! I hope it comes soon!

More soon,
CG

Congratulations Team Cystic Gal!!

This is the beautiful quilt I won :)

CONGRATULATIONS TO TEAM CYSTIC GAL!

YOU RAISED THE MOST MONEY
IN THE "UNLEASH YOUR STORY" EVENT
FOR THE CYSTIC FIBROSIS FOUNDATION!

Thank you to all those who donated, on the team and individually! You are awesome, and YOU helped to cure Cystic Fibrosis, one dollar at a time!

Love, CG

Use tonight's bloggy time to explore other areas of the blog such as labels, tweets, and the archive :)

Thoughts I Wanna Get Down Before I Forget Em:

Being in this stage of illness is so strange. There are a lot of adjectives that go along with it. This stage of illness is sad, and maddening, and overwhelming- but most of the time for me, it is just slow, and strange. I know that I have moved very quickly from "severe lung disease" to "end-stage lung disease."Every article I read about my symptoms is about "end-stage" lung diseases. I wait for a transplant because without one I will not live. On the one hand, I logically understand that. But it wasn't until this month in the hospital that I got any experience with this word, "dieing" as it pertained to me and the body I live in now.

What I know now about my point of view the weekend prior to going into the hospital is that I was already extremely hypoxic. So in addition to the lapses of logic that come along with feeling extremely ill, and not being able to breathe, my thoughts were actually altered. I remember sitting around my house in my pajams the entire time, and sleeping a lot, which must have worsened my hypoxia. Looking back, my mother says that I was already being sort of out of character over the phone. By Sunday, I was practicing active cycle breathing to keep my oxygen saturation around 92 on 5L of oxygen, and I knew Dr. U-bird was going to put me in the hospital.

This is where my memories start to get all messed up. Much of the rest of the week doesn't matter in relation to the point I want to make tonight - but I will say this -a lot of bad things happened that first week in the hospital and mostly because I was not my usual diligent self, overlooking my own care because I was all crazy hypoxic. Also, my own doctor was out of town, which bred a series of medical personnel self-righteous indulgences that I will write about at greater length some future day. So, yadda yadda yadda, a bunch of shit went down and I was just getting sicker.

[Sidenote to CFer readers: only on CF blog can you "yadda yadda yadda some scary medical stuff went down" in order to get to your point. I am reminded of that episode of Seinfeld, "You yadda yadda'd the sex?" "I yadda yadda'd the sex." I have, above, yadda yadda'd what is usually the most interesting part of the typical hospital story.]

A lot of bad things happened and by the end of the week, I was laying fetal in my hospital bed, which was propped up almost to sitting, and trying desperately to breathe: in . . . 1 . . . out . . . 1 . . . in . . . 2 . . . out . . . 2, until I reached 100. Then I would start again. I stayed up all night this way, counting my breath and occasionally stopping to see if my oxygen would stay stable. It didn't. I don't know, with the chain of events, if I had already seen a doctor, or I was afraid to call for the doctor, if I had tried the BiPap, or not. I only remember laying in the bed, counting my breaths, forcing them in and out.

This was when I realized, this is part of dieing. This is what it feels like. Before, I was ill. And now, I am dieing.

Around four in the morning, I started sending texts that said, "I really need someone here now. Someone should come here now," and some others that I don't really remember. I texted them to my parents who were planning to arrive only 4 days later as it was. I didn't want to be alone for four more days. All of a sudden.

At some point in the night, I was laying, counting my breaths on my fingers and trying to read with the book laying next to me. I was re-reading a book I have referenced here before called, "Sick Girl Speaks!" by Tiffany Christensen. On her list, "Top Ten Opportunities of Illness," she writes, "9. Going to an internal place that is so deep pain cannot find you there." In my state, I found this phrase very meaningful, and I decided to meditate on it instead of counting my breaths. I started to breathe to, "(Inhale) Take me to a place inside (Exhale) Where pain can never find me."

I wanted to find a place so deep and quiet inside myself that my tired lungs and breathing muscles could continue to do my breathing, while my mind and the rest of my exhausted body could get some rest. I started to also think about everything that lies ahead of me, not even knowing of the immediate threat of respiratory failure.

I wanted to find a place inside where pain would never find me. By the morning, I found it.

CG

CysticGal and CysticLady: Twinsies of Evening Wear

I bet you all wonder what CysticGal and CysticLady
do with all their evening time . . .

Well, here it is! Glamorous!

CysticGal, toweley at the hospital.

CysticLady, toweley at home.

Goodnight! Spend your bloggy time tonight exploring other parts of the blog- perhaps the archive, or the labels section, or get on twitter. Everybody's doin' it!

Love, CG