My first BAD day with CF

I don't normaly bitch and moan about how I feel. For the most of it, I'm used to it, I know nothing but. I reserve bitching and moaning for times like this.
Today I am bitching...

It hurts to breathe - It HURTS to breathe

Yesterday I woke up with sharp pains in my ribcage and shoulder, which made it impossible to take some deeper breath, not deep, just deeper (in other words, I could only take very shallow breathes)

My first thought was "that's what I get for trying to vacuum" - I haven't vacummed in years, but wanted to help around the house, and I was wondering if I pulled a muscle doing it.

So, It HURTS to breathe, and especially to take deep breaths, which I need to do when I'm short of breathe (S.O.B.) - and I get short of breath with simple tasks - simple, normal tasks. So, the only way to resolve this for now - sit, do NOTHING. If I do anything that gets me breathing hard, I'll be in trouble.

I climbed the stairs "too fast" - I was panting to try to catch my breath, but it was these short one second shallow inhales, which wasn't helping, only making the SOB worse. For a moment I thought about calling 911. I was in dire straits.

....so for the first time I got a glimpse at my future. Life with CF.

I thought about an online friend, Pepe, whose pft is 7%, Yes, 7%. To give you an idea, mine is at 40%, yours would be at 100% (or more). Can you imagine only being able to breath 7% of what you do right now? Take that 7% and try to do "normal" activities, like shower, dress or the all encompassing CF coughing. FUCK!

That inevitable day is coming where I will have little lung function left, but need to do BIG life-saving activities, like coughing. That's suffering. I am not afraid to die, but I don't want to suffer.

I couldn't take the deep breaths needed to cough the junk out of my lungs, I couldn't blow my nose, I couldn't even yawn. It HURT to do those things, so I tried not to, but needed to. That's suffering. I hated being so unable to function.

A CF friend brought up the thought that maybe I had a collapsed lung??? I have no idea. If I called my dr, they will tell me to go to the ER, but I HATE going there - it's ruined too many weekends, they don't know my history, and it takes too damned long. People with chronic illnesses HATE ER's, you don't feel safe...you only feel safe with your own medical team.

So, I'm doing the 'wait and see' thing. Today it's a little improved, I can take deeper breaths, and I can almost lay flat without it hurting, which means I can try and sleep in my own bed tonight and not propped up on the couch like last night.

Did I pull muscles, is it a collapsed lung, do I have some huge mucus plugs (a familar thing to those with cf) Am I doing damage by waiting?

breathe = life
CF SUCKS - it sucks the life(breath) out of me.
Yesterday for the first time, I felt like a hostage to CF.

This is my bitch, this is my right; this is my life

May is National Cystic Fibrosis Awareness Month!!!

This has been a fantastic month of strides for Cystic Fibrosis...


Congress and the President took action on four separate bills that champion the rights and health of people with cystic fibrosis.


The Cystic Fibrosis Foundation played a hand in each of the following developments:

· The Senate officially recognized May 2008 as National Cystic Fibrosis Awareness Month.

· Congress passed the Genetic Information Nondiscrimination Act (GINA) today. This law makes it illegal for employers and insurance companies to discriminate based on genetic information.

· President Bush signed into law the Newborn Screening Saves Lives Act, which provides resources and funding for new and existing newborn screening programs through 2012.

· The House of Representatives reauthorized the Small Business Innovation Research (SBIR) program. This program awards grants to small biotechnology companies that conduct important CF research.

Each of these initiatives has tremendous potential to help people with CF. These bills help increase awareness of cystic fibrosis, focus research funding on CF, and establish critical legal protections to help people with the disease live longer, healthier lives.


Thank you CF Foundation for all your work !!! It is unmeasurable!

A question my friend asked

Yesterday I was talking with a friend of mine whom I haven't seen in years. She asked if she would notice the changes in my health, would she be able to see it?

I had to think about that.
But the answer was No, probably not.

Though I had made mention of this-or-that in our e-mails, she wouldn't necessarily see the changes.
But then I added: "not unless you lived with me... "

So, ask John and he will tell you.

He will tell you today about the increased frequency of my low-grade temps.
Yesterday we didn't keep tylenol as a staple in our home.
Those low-grade temps make me feel crummy,
but you can't see crummy.

He will tell you today how productive my cough is.
Yesterday I coughed, yet it wasn't full of "lung junk" when I did.
He will remind you that you see me after I have cleared most of the morning junk out.
You don't see my junk, but we do.

Yesterday I held two jobs, cared for myself, my mom, and took my i.v's to work with me. Yesterday I took risks.
Today I'm retired and my husband cares for me.
Today I am more calculated in my moves.

He will tell you how our vacation plans stem around when my last tune-up was and when I'll need one again.
Yesterday I did as I pleased.

He will tell you today how quickly I return to feeling crummy after a tune-up.
So, he will tell you about all his anxiety surrounding a tune-up, but will also tell you he knows I'll feel better after those 14 days; Never like yesterday, but better. So he feels better too.

He will tell you about yesterday, when we met, I was slowed, but we ran with the wind.
He will tell you about today, when playing "get a dog" and how I need to stop after the first "get" run and take 3 minutes to catch my breath.
And he will tell you how I keep trying, despite it all.

He will tell you today about all the new meds I'm on, to help prevent flare-ups and to combat secondary issues to cf.
He will tell you how much more time I spend on breathing treatments, both in time and frequency.
Yesterday I never thought I'd be like "them".

He will tell you about todays' vacations requiring more baggage, and more time in the hotel room before heading out.
Yesterday was simply albuterol and more time exploring, and going farther to do it.

He will tell you about yesterday when I could skip a few days of treatment and neither of us would notice.
He will tell you about today, how junky and short of breath I am by a missed daily treatment.

Yesterday I ran the stairs.
and he will tell you how winded I am, even after a tune-up, when I take them at a slow ascent.

Yesterday,
I (we) took my health for granted.
Today I don’t have that luxury.

So,
If you were to take a snapshot today and compare it with yesterday’s
You wouldn’t necessarily see my cf and how it’s progressed.

...But I can feel it... I can feel the changes.
And I can see it, because I live the changes.

I fight for my health everyday now,
and because I do,
you don't necessarily see my CF.


...but we do