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Showing posts from November, 2009

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 waitin

Pic of the Day

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

Cluck Cluck Says the TBird

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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 so

Newsflash!

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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

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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 sur

Health Update and Fun for BiPap Use

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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 ver

Vid with Me and S-Artee

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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 ha

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.&

I Bet You Think This [Blog] Is About You

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*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 orang

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!

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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!!

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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

CysticGal and CysticLady: Twinsies of Evening Wear

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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