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30 Is The New 60

This is probably my tenth attempt at writing a blog post for this week.  Since getting out of the hospital I’ve been trying to catch up on work that I missed all the while keeping up with treatments and exercise.  Getting out of the hospital feels like getting out of jail in a lot of ways, and it’s often hard to readapt to life outside the hospital walls.  And dealing with more medical problems on top of it, only makes it even harder.

Patient vs. Visitor

My Grandpa has just had a heart attack. This is the first time that I can recall in my thriving cystic fibrosis ridden life that the role of being a patient and being a visitor is reversed. As I am gathering with my family encompassing my grandpa’s hospital bed I feel a sudden onset of a unwelcomed novel feeling. The room is filled with nurses turning off the beeping monitors, but they are not mine. Doctors cluster around the patient who is not me. IV’s are having blood drawn out from them, but it’s not my blood. How could I not know what to do? What to say?

Grief and Chronic Illness

Grief.  It’s an emotional experience so powerful and all-consuming one wonders if survival is possible.  Loss and subsequent grief seems to be something that those with CF experience quite regularly.  The loss of time when respiratory therapy treatments take multiple hours a day.  The loss of the ability to breathe easily and have energy.  The loss of spontaneity in having another exacerbation and being confined to IV antibiotics.  The loss of patience in having to call the mail-order pharmacy for the fifth time because they billed incorrectly… again.  The loss of having a romantic relation

Key to Paradise

Here I am, sitting at the local Starbucks conveniently located at one of many luxurious shopping plazas in San Diego, California.  In the parking lot, my Toyota Scion is nestled between about every variety of BMW’s, Mercedes, and I think…a Maserati?! Forcing myself not to gawk at it, everyone else seems strangely at ease with the blatant displays of wealth.

Swimming Through CF

Barbara swimming

Here I am at 68 years old, living with cystic fibrosis (CF) and writing a piece for a blog! It is a long story; but were it not for my regular lap swimming for 40 years, I wouldn’t be alive, healthy, and keyboarding for the CFLF Blog. My CF was not diagnosed until I was 64 years old; I knew I was a carrier, as I lost a sister to CF in 1971 when she was 21 years old. As I aged I had lots of lung problems and at some point doctors told me I was likely a carrier with symptoms.

Depression and Cystic Fibrosis

When I have a lung exacerbation and become physically sick, I become equally sick mentally. This state of disturbance blankets my outwardly copacetic life. The dancey cadence of my voice becomes lethargic. The spark of life in my eyes is only visible under a haze. Though a stranger would never notice, depression surrounds me. When everything seems to be going swimmingly, I run into a dam. But thats cystic fibrosis, and for some suffered (one in three) this is topped with depression.

Breathing in the Dark

I was admitted into the hospital six days ago with my lung function being the lowest it’s ever been in my life. I feel like I've been here for almost a month.  Anyone who's ever spent a lot of time in the hospital knows that five hospital days feels closer to 30 non-hospital days.  There are times in here when an hour literally feels like an entire day.

Workout. Cough. Repeat.

Treadmill Header

It has been quite a week for us in the Cystic Fibrosis community. With only 28,000 patients in the United States, our collective voices were the "shot heard round the world".  And..with all respect...it was about time!

Many Hands Make Light Work

My mom always would tell us “Many hands make light work” when she was trying to convince us to help with gardening, or house chores, or something we didn’t necessarily want to do.  However, it was true.  And I found the experience would even at times become enjoyable, working together to get the job done. 

Teamwork, whether working at a chore, on a project, or at a sport is typically a positive experience, and most often results in outcomes and accomplishments greater than what would be possible by going it alone.

Coughing in (Un)Comfortable Quiet

Picture this, you’re in a 60 minute Restorative Yoga class, in an enclosed room surrounded by many fellow yogis. You’re set up with your feet positioned above your head with the aid of a bolster over some blocks. Your head is slightly lifted by a soft tri-folded blanket. Arms spread wide, palms facing to the ceiling. Arguably one of the most comfortable positions of your stressfully busy day.

(This image is a recreation of the position aforementioned during a hospital stay)

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