Cystic Fibrosis Fatboy — Page 37 — The daily quest to gain weight

Yesterday’s Thing: I Outrun CF

March 21, 2011

Yesterday was the great, national Outrun CF virtual run day! CFers, family, and friends everywhere signed up for a DIY outing wherever, however on the same day under the same name. It was really pretty cool to see people putting up their times and distances on Facebook throughout the day!

Since it’s been over 2 weeks of trying to get my new antibiotic to take care of my sinus bug that has also been causing some lung issues, running was not going to be an option. Beautiful came downstairs dressed to go out and I proceeded to cough my head off for the next 2 minutes as I put on my shoes. Yeah! Really ready to go out, eh? We had already decided to walk instead of run, but with these circumstances, any other ideas I had of being awesome went right out the window.

Being a beautiful March day in Tampa, it was well over 80 degrees, so even with the delightfully thin “I Outrun CF” shirt, by the time we walked up and down our street, I was sweating down my back and we called it a day. I’m over 30, not on O₂, not on IVs, and I’m not on the transplant list, so walking up and down the street was still kicking CF’s butt.

Guest Post: Continuing Life

March 18, 2011

Today’s guest post is brought to us by Bo Butler. His Ashley had her double-lung transplant in 2007. They go to Pittsburgh for her care and she is doing great! I trust that you’ll find this as thought-provoking as I did.

There’s something I haven’t talked much about on my blog, so I’m grateful to Fatboy for the chance to guest-post-it-up. It’s something very important to both myself and to Ashley. Something, in a larger way, becoming increasingly important to a CF community that, for the first time in human history, has the medicine and the technology to stay alive longer. Long enough to want and to deserve more from life than simply breathing.

What is the goal of continuing life?

Continuing life.

Since she was very, very young, Ashley has asked little else from life than that she be able to have a child. Initially the problem was that no one thought she’d live past ten. Once she passed that they thought she wouldn’t live past twelve. And so it went. Until she got old enough that her body – hampered by lowered lung-function though it was – would be able to conceive and even carry a child to term.

And so of course worried doctoral hearts palpitated with warning. Blood pressures went up beneath blindingly crisp white smocks. Social workers were brought in. Discussions had. Fingers wagged.

Ashley’s a smart girl, though. Smart as she is tough. [Read more…]

With Great Power Comes Great Responsibility

March 16, 2011

Source: unknown

This weekend made for a really nice connection with another Fibro in a way I totally didn’t expect. Related to what Beautiful and I are pre-occupied with, I found another CFer about the same age who had experience with the same thing. Since it’s still a deeply personal topic that we are still keeping quiet (so quiet only 20 or so people know), I contacted him privately and asked if I could discuss it with him.

Few things warm me up to a person as fast as sharing something close like this that other people don’t know about, but because he opened himself up to me to discuss it, I feel profoundly privileged to have that time and information. Later, when we “come out” with what is going on, I will be the first one to step up to the plate and return the favor to others who need someone to lean on.

“With great power comes great responsibility”

I feel the same way about many of the things that I have experienced so far: sinus surgeries, getting a port, testosterone injections, discussing marriage and my childhood. I love to share and help others who are struggling with what they are dealing with because it brings a level of purpose to having this wretched disease. “With great power, comes great responsibility,” Uncle Ben taught Peter Parker. Though our “power” is of a different nature, knowledge and emotional fortitude as a result of life experiences is power.

Sometimes – often – it is difficult to see a silver lining around what is going on. [Read more…]

What CFers Do: Wait for Antibiotics

March 14, 2011

This entry is part [part not set] of 19 in the series What CFers Do

Two Fridays ago at my ENT visit, he faxed an order for vancomycin for me to start using with my PARI Sinus nebulizer to vibrate around up in my sinuses to see if that melts away the green monster that is living in my head.

I’m still waiting for said antibiotics.

By Wednesday morning, I called to see when I could expect the shipment, and they said that shipment wasn’t scheduled, so I said I’d like it by Friday. Thursday, I got a call from them saying that my insurance would only let one specialty pharmacy send it to me: their own pharmacy. I waited for that call for delivery. Friday, I called them. They didn’t have the order ready because it took him 5 minutes of me listening to him breathe like a prank call pervert to find the fax from the other pharmacy to tell me that they would have to get approval from the insurance to be able to schedule delivery.

Today… I’m not holding my breath. I’ll be calling them at 2pm – after the lunch rush – to poke them with a cattle prod.

Yesterday’s Thing: I Outrun CF

March 21, 2011

Guest Post: Continuing Life

March 18, 2011

Today's guest post is brought to us by Bo Butler. His Ashley had her double-lung transplant in 2007. They go to Pittsburgh for her care and she is doing great! I trust that you'll find this as thought-provoking as I did. There’s something I … [Read more]

With Great Power Comes Great Responsibility

March 16, 2011

This weekend made for a really nice connection with another Fibro in a way I totally didn't expect. Related to what Beautiful and I are pre-occupied with, I found another CFer about the same age who had experience with the same thing. Since it's … [Read more]

What CFers Do: Wait for Antibiotics

March 14, 2011

Continuing life.

Time Elapsed Since IVs