The Marathon Continues

My life has become a marathon. Whereas in the past, through my childhood and teen years, and even well into adulthood, my health was a series of stops and starts – a lot of sprints and then recovery time. But now, there’s no clearly defined periods of wellness or sickness. It’s all one, long, nonstop flight to infinity.

Big Hill Ahead!

My doctor appointment last week showed that I’m experiencing another lung flare-up/exacerbation/active infections. With more bugs than I can count on one hand, it’s a crap shoot to figure out which of the bacterial strains actively growing are making the loudest noise.

My lung functions are down, I’ve lost weight, and I’m worn out. My doctor suggested that they admit directly from my appointment, but I begged them to give me some time with oral antibiotics (hoping that they some of the bacteria that’s acting up responds to them) and increasing my airway clearance (as close to six hours a day as I can do). Continue reading

Cystic Fibrosis: Simply Surviving

Sometimes I want to scream to people, “YOU DON’T UNDERSTAND!”

Every so often, someone will send me a link to a news article or blog post about someone with physical impairments doing amazing things - a marathon runner with artificial legs, a blind skydiver, a model with a colostomy bag. The moral of the story is usually something akin to “they never gave up” on their journey to achieving their personal dreams despite what most people would consider a disability or limitation. Continue reading

Calling Cystic Fibrosis Patients

Do you have Cystic Fibrosis?

Do you have a story that you’d like to tell? Some tips that you’d like to share? A photo depicting an important moment in your life?

I’d considering doing a series of blog posts about people with Cystic Fibrosis. I haven’t formed any real structure around it, but I do know that I’d like to include people from many parts of the world, from different backgrounds, etc.

If you are interested, please comment send an email to: therapink . com @ gmail .com (remove all empty spaces).

To begin with, please provide the following information (please note that this information is for my general info-gathering purposes only):

1. Name (first and last – although only your last name’s First Initial, and not your last name will not be included in the blog post unless you give permission to do so)

2. State/country

3. Age

4. Age at diagnosis

5. Single – Relationship – Married – Separated – Divorced – Widow – Other

6. Children? Yes or No

7. Transplant? Yes or No

8. CF Mutations

9. Best way to reach you – email address, phone number, or text message

10. Some words that describe you. For example, I might say this about myself: writer, cats, silly, book smart but street-naive

11. In addition, I would like to include at least one or two photos of you, once I write each post. Don’t send them now, just send your answers to the ten questions.

Thank you in advance. I truly hope that my plan turns into something of value. If it doesn’t, I thank you for your time. I’m pretty sure, however, that this will become something. Let’s see where this goes!

I Have to Have Faith

This past month has been a rough one for the CF community. Because we’re strongly discouraged from gathering in person – the Cystic Fibrosis Foundation recommends that no two people with CF should be near each other indoors, and that they maintain a distance of at least six feet outdoors – most of our support happens online. Continue reading