Pink Yesterdays

Another milestone has passed for me, 

er ah, should I say for my daughter Jen.
My little girl turned 29 this past Monday!
Good lord, I can't believe it either, 

I remember turning 29, what seems like not too long ago.

Happy Birthday Jen, 

I Love you with all my heart.

Pink Yesterdays

How can it be that when,
I bent to kiss you good night,
My daughter,
A beautiful young woman
Lay where only yesterday
A little girl had been?

When did the barrettes and
Ponytail ribbons
Of birthday party days give way to the
Styling comb and make up mirror
Of Saturday night dates?
Was it not only yesterday,
Crayons of all colors laid upon the table
Where now bottles of nail polish rest?

How can it be the buggy you filled
With so many dolls
Has been pushed aside and new suitcases
Are filled instead.

Did you ever know the finger you
Wrapped yourself around was tied right to my heart?
It seems as though the ink has just dried
On the pages of your baby book
And here we are laughing over pages
In your year book.

How did the ballet slippers of a little girl
Become the high heels of a young woman on her way?
Such a little while ago you cried,
"Mommy, I'm scared", and now you whisper,
"Mom, don't worry I'll be fine."

When did the teddy bear you hugged all night
Become the photo of someone you've chosen for life?
How can it be the smell of baby powder
Turned instead to the scent of perfume,
The giggles of a little girl
Became the tears of a teen,
And the roses tiny fingers picked
Were treasured like the petals of a prom bouquet?

Wasn't it only yesterday ruffles and tea parties
Coloured my world pink and today
A new address and a good bye kiss stain my world blue?

How did it happen so quickly and
When I stop to realize all my golden tomorrows
Will bask in the memories of pink yesterdays.
Thank you Lord for pink yesterdays.
~Alice Collins

The truth about MRSA

WOW, after my last post and responses and ??? I'm getting, I guess I need to clarify a few things about MRSA. I always forget that I know a lot about my bacterias and conditions that the average person does not. But rest assured, unless you have AIDS, are on chemo, have COPD, lung cancer or are another CF patient, my MRSA is not an issue to the general public.

MRSA is short for Methicillin-resistant Staphylococcus aureus, or Multi-resistant staph infection, often referred to in the press as the "superbug.". It is resistant to most antibiotics and hard to treat weather it be a skin infection or colonized (living) in the lungs. It has most recently been in the news that people are contracting the MRSA skin infections in gyms, schools, doctors offices etc., causing a somewhat un-needed hysteria.

From Wiki re skin infections:
The initial presentation of MRSA is small red bumps that resemble pimples, spider bites, or boils that may be accompanied by fever and occasionally rashes. Within a few days the bumps become larger, painful and eventually open into deep, pus-filled boils. About 75 percent of CA-MRSA infections are localized to skin and soft tissue and usually can be treated effectively.

And to clarify, I have NEVER had the MRSA skin infection, which IS contagious.

Again, from Wiki re CF:
Cystic fibrosis patients are at particular risk for pulmonary colonization of MRSA, both because of their difficulty clearing mucus and their frequent hospital visits, which can increase exposure to MRSA. These factors substantially increase the rate of life-threatening MRSA pneumonia in this group. The risk of cross-colonization has led to the increased use of isolation protocols among these patients in a hospital setting.

In a nutshell, MRSA is everywhere, in the air, on surfaces just like any other bacteria or virus. Everyone is exposed to it all the time. It is especially prevalent in the health care setting, mostly hospitals. I can just about bet every cent I own, that almost every health care worker tests positive for MRSA in their nasal passages, the most common place for it to be. Although it doesn't cause any harm to a healthy person, they in turn can pass it on to a patient with a compromised immune system who is at a significantly greater risk of colonizing MRSA.

For this reason, I NEVER enter a health care facility of any kind without donning a mask and gloves, for my own protection as well as for those around me. CF patients are not allowed to socialize because of cross contamination issues. At clinic, we don our garb as well as all the medical staff. The patients are kept a good 10'-15' away from each other at all times.

And in the hospital, we are put in isolation, a private room that is supposedly scrubbed from top to bottom before we enter. Anyone entering my room has to wear a gown, mask and gloves. I can't leave the room unless I do the same. Even though the contamination protocol procedures are put into place, I still contracted it. This is why I have become germ phobic, washing my hands all the time and staying away from obvious sick people. My little bottle of Purell hand sanitizer has become my constant companion.

I hope I've educated and enlightened a little. I am so careful about MRSA, if I knew anyone in the high risk category, believe me I wouldn't be around them.

As for everyone else I know, you are safe around me. The only thing I ask in return, is to alert me if you have a cold or even the slightest sniffles when around me. A simple cold turns into pneumonia and a guaranteed hospital stay for me. YOU are a bigger threat to me than me to you. Good lord, if I were any kind of health risk, I certainly wouldn't be around my grandkiddos.

Be well and stay healthy!

Oh crap, it's back!

This is not a good way to start a new year.
Yet, now I have some answers why my lung function is taking a dive.

Ugh, my nemesis MRSA is back!!!



I got an email from my CF nurse that my last culture from 12-29, showed this dastardly bug colonized and growing. I first contracted MRSA after my lung surgery in 2000. Until 2005, it was colonized but didn't give me any trouble. It just hung out enjoying the moist, warmth of my lungs.

In 2006 the bug counts began to rise uncontrollably and by 2007 it landed me in the hospital 5 times for rounds of IV Vancomyacin. Vanco literally ruins my kidneys, I almost ended up on dialisys that year. They switched from Vanco to Zyvox in Dec 2007, and that seemed to do the trick. I consistently cultured 5 random negative samples throughout last year, as recently as end of Nov. 08. Then, I was hospitalized on 12-1-08.

So guess what?
I'm convinced that I re-caught the MRSA from the hospital, it swarms with that crap. Even though I try to be careful and I am put in isolation, it still finds a way to sneak in.

I guess next time I'm in the hospital, I need to bring 2 tubs of lysol wipes and clean the room myself.

Guinea pig

Awwww, isn't she cute?



No, she is not my new pet, but rather . . .
I am the guinea pig.

I am participating in a 42 day clinical trial study, starting next week. The first week I go to clinic for 3 days in a row, subjecting myself to many tests, blood, PFTs, sputum samples etc as I take the drug Doxycycline daily. Then, my clinic visits become weekly thereafter until the study concludes.

The study will determine the effect of Doxycycline use and inflammation of the lungs. The use of anti-inflammatory drugs as treatment for CF has been shown to be beneficial in reducing inflammation and the amount of pulmonary function decline in CF.

It is so important for CFers to volunteer and participate in clinical studies and trials. Since CF is considered an orphan disease, no drug research or funding is done on a federal level. We rely on the CF foundation, our clinics and ourselves as subjects to introduce new therapies and drugs into the pipeline, and eventually to market.

Snort, snort . . . guinea pigging I go . . . LOL.

i am a misfit

i am a misfit
living on an island,
where not many my age
dare inhabit.

i am a misfit
trying to survive,
amongst a world of
20 somethings.

i am a misfit
pondering every physical problem,
as a result of age
or of progression.

i am a misfit
spending hours on end,
doing the unimaginable
just to keep breathing.

i am a misfit
who outwardly doesn't look sick,
the exterior is deceiving
I'm drowning, I'm dying inside.

i am a misfit
a genetic mess, mutant
trying to find peace,
knowing I'm not supposed to be alive.

i am a misfit
trying my best,
to just live, laugh and love
as an unattainable normal person.