A friend of mine said living with a chronic condition is a strength and a weakness.

That is what it is.

I have always stood up for the underdog, and yet I am an underdog on paper; a strength and a weakness.

I believe in working with others not against. There is no peace in that. And I believe in working with CF, never against. There is only stress and inflammation in that.

On the outside, these could seem like weaknesses. I contest that – as all my experience knows and understands that when you shake hands with what you feel restricts you, confines you, the voice at times you have created in your free time, mustering about in the world – that once you say “I see you” the energy is diminished. No more manipulation, no more hiding, no more stories to spin. No more fighting in the way your eyes furrow and face tightens. You work alongside this all-knowing force.  Admit, “You are my teacher and I am always the eternal student.”

Which brings me that I am on another round of antibiotics to break-up this lingering infection. I finished my nebulizer antibiotic treatment 2-weeks ago and my lungs throughout the 28-day course did not sound optimal. I was giving it time to see and once the course ended, there was a slight different sound but my cough did not return to its baseline.

I hopped on the treadmill two days ago to further test it, and I had to get off as I was coughing too hard for too long. I usually cough a bit in the first few minutes but this amount was unnecessary. I was doing my neb while on it and the neb was flying around the room more than it was in my lungs. I looked at my hand holding the neb far away from my mouth and thought “This is not affective.”

I decide to call my clinic and got a voicemail. I then decided to email my nurse. No response that day. I called the next morning to follow-up and the secretary took a message. My nurse emailed me back at 4:22pm saying she was off the day before and will talk to my doctor in the morning and will call me in the morning.

I called around 11am as the morning was almost gone. The secretary said she is with a patient and I asked if she had a couple minutes.

She said my doctor was in inpatient rounds. And you know what is tricky about the new computer system is for every script the doctor must sign it. Honestly – that is crazy. A nurse should be able to prescribe without a doctor’s signature as this only causes great delay in care.

We talked and she said she would talk to my doctor once she sees him. After 2pm I got a call from my pharmacy, 48 hours after my initial call/email.

In my email I asked for a 3-week course instead of their normal practice of a 2-weeks. I said, my MN clinic prescribes a 3-week course as they find it more effective. I was happy to see Dr. S. prescribe a 3-week course. It settled my rumble.

Given all this – my team here in Boston are operating at limited resources. The two attending doctors have to make inpatient rounds depending which days. I can only see my doctor on Mondays and Thursdays as that is the only two days he is in clinic full-days. The team is trying to see and treat many patients and they are stretched. Then the added signature to prescriptions is ridiculous.

My goal is to streamline my communication with my MN clinic when I see them in 3-weeks. They have multitudes of resources as they see hundreds of patients. And to point-out it isn’t just about making a call, but they have to see my newest lab results to decipher which medication is best to prescribe. My labs can be multiple pages and I find some of the information baffling.

But what is great – I can already tell this oral antibiotic is working. I also restarted, surrendered to another course of inhaled antibiotic neb this morning which means more time and energy. I exhale. More time to ponder, create, and become even more curious. Smashing and crashing on all sides – or one can hope.

The cool ice seeps
Puddles, flows straight
Under and around your soles
Awakens, jolts
Your tiny toes.

Stiff, in shock
They shout out – “Help!”

You almost float,
Spin, and plop
Then your brain kicks in
Quick – “The ice is too soft
To stand and too hard to sink.”

A strength and a weakness.