dream about swimmin'

I was writing to someone recently in the blogworld that I've been having a lot of dreams about swimming lately. I thought / think these are omens about my new lungs coming.

Little know CG Trivia Fact- I was a swimmer when I was a kid, and a lifeguard and swim instructor in high school and college. That's right- I used to be healthy enough to save humans from drowning- and anyone from my lifeguarding class can attest that my lifeguarding teacher was possibly the fattest man ever seen in a bathing suit, and we had to do all our practices on him. Until I was about 20 my favorite thing to do was swim, and I loved to swim under water. Sometimes I would swim laps underwater. Same exercise. Double the fun. I thought these were dreams looking forward to my new lungs and I'll take deep breaths and let them out slowly and swim and swim and swim. Then I saw this commercial.

Warning: sorta sad commercial. but very true.

Am I just having these dreams about swimming because I cannot breathe? Oy.

Goin' on a Lung Hunt.

Not a lot of time on the sched. before I leave for Cleveland Clinic tomorrow to get myself on another UNOS list. I am so very excited. I made this video to show you :)

2nd First Webcam Video

A few things are obviousemente from this video:

a) I am having fun with the options on my webcam
b) I look less shitty tonight than I did last night
c) I adjusted my volume settings so you can hear me
d) The voice/visual still seem slightly off. Is it me, or is the audio ahead of the video? Pls respond.
e) I miss teaching little kids who actually enjoy my desire to pantomime most words as I speak them (see below).

Goodnight!

New Webcam!! And a shout-out to Piper and Ronnie and Cystic Lady!

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!

Weekend Fun: Tips for Dance Parties

A slice of life with CG and CL (CysticLady)

The People Want What They Want: Lighten Up Already!

When you're feeling blue. Down in the dumps. Cranky Face Magoo.
There is only one thing to do:

DANCE!

And if the first time doesn't work . . .

DANCE AGAIN!
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,
Love, CG

This is an old video

About a week ago (Wow, it seems longer ago than that!), I made this video. When I looked at on the very small screen of my digital camera, I was pretty happy with it. I looked okay, and sounded okay, and though the image was dark, I figured, it was good enough and informational.

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.

Read "Breath Sentence" blog, too!

More tomorrow. I'm to bed soon! Love, CG

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)

Video "Starring" bloggy friend Ronnie!

Breaking News, Already!

This is a great NY Times article with videos about CF! My comments on the video will be below . . .

http://www.nytimes.com/interactive/2009/06/10/health/healthguide/TE_CYSTIC_FIBROSIS.html

1) The first thing that notice about these videos is that CF people's voices have some similarities. A certain sound in the voice that is deeper than normal, a certain rhythm to the way the person takes their breaths within a sentence. It's neat. The women sound just like me, I think. (?) I can't tell if their voices are lower than other women's voices, or higher. It's strange. But I like it. I often wonder what other people think about my voice, if they even think about it. In my line of work, I think about my voice like 50 times a day. But then . . . you don't know my line of work, now DO YOU? Hmm...I'm suddenly realizing I should tackle this topic again once you know more about my identity!!