Home again Home again... jiggity jig.


So while I was forcfully removed from my normal living exsistance I wrote up a little journal with the intention of boring you to tears with it. I can't bring myself to torture you like that. Arn't you glad!

So you'll get the foot note version.

Into hospital with a lung capasity of .75L.
Out of hospital with a lung capasity of 1.46L. That put me at 39% of normal or right below the "can live a normal life" line. The good thing is that is without a breathing treatment. We are guessing that I will range in the 41-45% with treatment. 40% is normal living.

Into the hospital with so many infections they couldn't figure out where to start.
Out of the hospital with one that I will have forever and will be on the treatment every 28 days to control.

Out of the hospital with less drugs or regiemes than I figured. They are varied but not un-doable.

Home from the hospital on room air! Oxygen only at night and to excercise.

Home from hospital on Jan 30, only to relapse BADLY on Jan 31. A few frantic phone calls and my DR said if in 6 hours I wasn't markedly improved I was to go to the ER and make them call him, he was afraid on the trip home I had popped an air sac and was leaking air into my chest cavity.

New meds for over the weekend and rest rest rest.

Today Feb. 5th is the first almost normal day I've had since I got home. I have a all the meds in from shipments that I was waiting on. My new vest arrived today (you ever want to try it AD you can come anytime, it's rockin'
for airway clearance). I did say I would never own one of these rotten things, but I have 30 days to decide if it's helping or not.

I'm not sure how long it will be until I'm up and ready to work full time. Right now we are schedualling everything for weekends so Bill can cover me without having to reschedual people if for some reason I can't do it.

The ups and downs are daily right now. I'm sure soon they will be weekly then hopfully monthly then maybe yearly.

I'm schedualed for a 3 month check up in SF. After that we'll determine a longer term medication plan, meaning we may actually peal off more of these drugs (thank god, we're at $6000 a month now), and we'll plan farther out checkups. Blessedly though my nurse is only a phone call away and she ANSWERS her phone. *Gasp*

My dad and I are debating whether we should buy our own plane, invest in cal-or, or write it off as "will never happen again". Between us the flight people have gotten 60K in the last year.

Miss me?

Guess where I am. No Sarah you can't guess you have the answer.

I'll give you a hint. It involved white coats, airplane rides, and more white coats.

Oh yeah we're in San Fransisco. I'm at Cal Pacific getting a much needed tune up.

The lungs are in bad shape. The heaviness I've felt for ages in my left lung are cysts. Those may never gop away and they harbor infections in there. When the infection in my lungs get bad those swell and the sensation I feel is heaviness. I do have damage in both lower lobes that may be irreversible but all those things things I've said I KNEW, I did know. The damage is from long term infection being harbored in my lungs for years.

Best case is that we can kick the infection and that will reduce the swelling that is making me unable to breathe. I will gain back my lung function and I will go along like a GOOD girl and keep in touch and working with a CF doctors and you all can read my ramblings for lots longer. You know without lifetime o2.

I do have to say thanks to the 4 of you that have stuck through all my rambling emotional distress. When you are surrounded my doctors that are a bundle of negative you tend to drag down with them. The doctors here aren't like that, and while this is major, everyone is totally positive.

So ready to get scared.
My lung capacity as of today is .89L.
HEY WHAT?! That's UP from yesterday, which was .75L. Normal for my size is 3.0L "Normal" for me is about 2.0L. So I'm at like 1/4 of my normal.

So here is where I am. Unfortunately my computer will leave with my husband tomorrow. So no regular posts, sorry. I will probably be here for at least one week more than likely 2.

Please keep me in your thoughts. I'm thinking I'm doing ok. I'm totally feeling better than how I felt before I got here.

Oh and I still hate to fly. EWW..... That flight was great they say, flat even. Pfftt... felt horrible to me. Of Course I was strapped a gurney.

Answer me this... because I can't get the internet to tell me which means I'm not asking it the right questions.

If the barometric pressure is rising that means it's going to......?

Rain or Sun?

I always look to see what it is.. but never think to remember what it was. IE Oh looks it's nice and at 30.5 but what was it while it was raining.....

Oh sure I could probably dig back through wunderground.com and find the answer, but I bet one of you loverly readers know that answer off the top of your head.

HI it's me! Not Dead yet.

What? You look disappointed?

Ha.

So mornings suck still. But then they have sucked for years so that's really nothing new. I spent most of yesterday off of the oxygen and did ok, you know, not doing anything. Today I spend most of the day off the oxygen and have to work.

Wish me luck.

I still can't quite bring myself to leave the house without hauling George with me. Panic sets in and all. I think I'll have to break myself into short trips once the dust has settled after this little round of roulette.

I must be sleeping again as I woke up before my alarm this morning and didn't feel like I could crawl back in for the rest of the day. I do know I'm not getting up over and over at night to clear my lungs.

I don't think twice about getting up and walking from my computer to my bedside now, with or without oxygen. We're talking 10 steps both ways, but last week it was a monumental task. This week, a blip on the screen. For that alone I'm sure my son is eternally grateful.

Bill started on days today. This will either go just fine or next week the neighbors might be wondering what that smell coming from the garage is.

Ok I'll bite. Which is harder marriage or motherhood?

I find marriage to be harder. Motherhood is a piece of cake for me. But marriage I find a pain in the ass. I blame being raised by a strong single woman. Don't take that as I don't love my husband. I do, mostly. Just kidding. I just find it really easy to say, FINE pack up and take your shit somewhere else. Because if my choice is dealing with your, nasty attitude, condescending mouth, general crap, mental issues, anger management problems, my choice is SEE YA. I CHOOSE for you to be part of my life. I don't NEED you here. There isn't a fundamental part of me that has to have you here. I can change my own oil, fix my own pipes, mend my own fences, fix my own flat. Are those things easier with you here, sure. I'm not dumb. My husband was raised by a mother who 'needs' her husband. She can't do XXX because only he knows how to.
I was raised by a mother how did it all herself because she had to. There was no one to unclog a toilet or fix a broken faucet at our house. I tend to run like that.
My husband has gotten much more used to that. He even now "gets" it. He doesn't always like it, but he's so much better about just getting it.

Besides he can't fix a faucet anyway.

Not dead yet.

Still bawling at the drop of a hat. Oh look, like right now, just mentioning bawling. What a frickin' wimp.

I'm trying to take a break from my oxygen. After the panic attack yesterday when I tried to leave home without it, I felt FINE, I have to come to some sort of terms with this. Or really, my life is over. No I'm not trying to be all melodramatic. Really think about all you know about me. If I can't do those things, those on the go things, what do I have left. My life as I know and love it would be over if I'm tied to this, or any, machine all the time. I just don't know if I can do that.

I looked into hiring a full time employee yesterday. I thought I had someone in mind but she went and got a real job with critters she likes instead of smelly cows. LOL. Anyway turns out I can't afford the workman comp anyway. (1600 a year! for less than 80 hours a month OMG) I may have to hire someone through a temp agency that will cover those costs. Bill said one of the people he knows hired a family member though one, which means I should be able to pick someone and then go in and say I want to hire XXXX. I have to do something to keep this thing rolling exspecially with incoming doctor costs.

And yes I'm working on getting to the city this next month. I got the referal number into my doctor and went to call him yesterday and forgot he closes early on Friday. I also applied for a PAP (precribtion assitance program) for people with Cf that it looks like we might actually qualify for. Considering some of the drugs used today for my lungs are, are you sitting down? Ready for this.... $4600 for 28 days! I'm already on drugs that are running us about 400 a month.

On a side note.. anyone want to drink this water for me?

If you dont hear from me for a while it's because I'm tired of saying OHH I feel better... OHH I feel worse.

Fuckit. When I'm dead there will be a notice. If I get better I'll be back.