Cystic Fibrosis Fatboy — Page 14 — The daily quest to gain weight

Welcome to Aetna Health Insurance Hell

February 16, 2012

Arguing On December 17th – a Saturday – I received an e-mail from Aetna Health Insurance (something that always makes this guy with cystic fibrosis nervous) saying that there was a new communication for me. I clicked the link, logged in to find my “communication” was a plain and simple Certificate of Continuous Coverage with an ending date of 12/31/2011. Nice. A CFer with no coverage. Again.

Monday afternoon (because I would swear they were swamped at 9am), I called for an explanation of such a mysterious message.

“Oh, we’re just giving everyone in Florida with your plan a new ID card. Everyone’s getting them.”

Oh, okay. We went on with our day, our month, our year, and even our new year.

Then we got a call from Dr. Tabor‘s office about my visit asking if I had new insurance. “Sure, it’s the same plan, but here’s the number.” I went to that appointment and strangely, for the first office visit of the year, my co-pay at the desk was only $35. Odd! [Read more…]

How Do I Get Into a CF Treatment Routine?

February 15, 2012

I got an e-mail from a new reader. She’s college age (I call them “the unfortunate years“) and wasn’t doing treatments and had to pay the price by taking a semester off. Her question reads:

I’ve gone so long not doing the things I need to stay healthy, that building up a routine for myself and sticking to it has been hard to do. Do you have any tips on getting yourself into a good routine? I do the Vest, Acapella, Pulmozyme, 7% Hypertonic Saline, Cayston, Tobi, and Colistin. When I ask at my local CF center about tips they say “Well, just do what we tell you.” which is correct, but I thought someone who juggles a full CF routine and a life may be able to help me a little more. Thanks for writing your blog. Thanks for being so honest. You’re doing a great thing!

Is there a single one of us who hasn’t heard this from our CF doctors at some point in our life? That’s a great question and one that I didn’t have an answer for until too long ago. Each of the last 3 times I’ve been to clinic complaining about feeling run-down and easily short of breath, Bill (the clinic’s RT) would tell me to do aerobic exercise for 30 minutes 5 times per week.

I’d nod my head like one of those drinking bird toys, knowing full well that I 1) didn’t have energy to exercise and 2) I didn’t have any more time in my day that wasn’t taken up by eating, treatments, running the business, and resting enough to continue doing all of the preceding items.

Then Spiriva changed that. I started on Monday morning after 2 days of DuoNeb and felt so good that I declared it was time to walk after treatments. Thus it started. [Read more…]

Our First Valentine’s Day to Today’s

February 14, 2012

Way back in 2003, Beautiful and I had our first Valentine’s Day together. I was only 24 (barely) and she was only 18 (almost 19) and we looked so young, I wouldn’t be the least bit surprised to hear that the wait staff thought we were young high-schoolers.

I’d pretty much stopped spending all money on myself for a month and wanted to take her to a Mongolian place down in Ybor City called The Dish. You get all of your ingredients in a bowl and your choice of noodles or rice and they throw it on an 8-foot-round hot plate and put your choice of sauce. Basically, if it sucks, it’s your own fault for picking ingredients that don’t go together.

We were there for hours and then walked around to look at the shops and other restaurants, bars, and clubs. Deciding we had seen enough of Ybor, we left.

Look at how short her hair was! It’s never been that short again. I’ve asked – several dozen times – but I will always have that memory of that super-cool cut that knocked me off my feet a decade ago.

Fast forward

Some years, we (or at least I) didn’t have anything to get her on such a special day, so the “special day feel” of Valentine’s has wavered over the years . [Read more…]

My Perfect Match and How Fostering Fits

February 13, 2012

You know those moments in your life after you either struggle and struggle or wander and wander for months or years on end, only to look back to realize you suddenly understand the struggling or wandering? Those moments when it becomes crystal clear that you have a purpose? You have been making “the right” choices?

Beautiful and I have had so many of them in our 5 years of marriage already. On the eve of getting licensed for foster care (just one more inspection to go), we had another “moment.” I’ll start at the end and work my way backwards for some literary and storytelling flair.

We had returned from our first foster care support group at the church that hosted our MAPP class last spring – Lauren Dungy spoke about her and Tony’s adoption of 5 kids. It really, really felt real for the second time so far; the first time it felt real was signing papers and answering interview questions for our home study just two days earlier.

I asked Beautiful, “Do you see us being one of those “crazy couples” who have 11 foster kids [in a giant house that sounds like a 3-ring circus]?” In my mind, I’d been pondering this as a very real possibility for our gifts and convictions, but obviously not with this 3-bedroom townhome. “Yeah, I think we could be… but not with this house.” We went on to role-play a call with placement, “Will you take this sibling group of 5?” “We accept your placement if you buy us an 11-room mansion in Avila.” Avila is an, exclusive neighborhood in Tampa where the Dungys still have a house. That was a good laugh, but the seriousness of the original answer was there.

Our goal, by virtue of it being my most intense goal of our married years, was to be able to live off my income so we could start a family one way or another. [Read more…]

Welcome to Aetna Health Insurance Hell

February 16, 2012

On December 17th - a Saturday - I received an e-mail from Aetna Health Insurance (something that always makes this guy with cystic fibrosis nervous) saying that there was a new communication for me. I clicked the link, logged in to find my … [Read more]

How Do I Get Into a CF Treatment Routine?

February 15, 2012

I got an e-mail from a new reader. She's college age (I call them "the unfortunate years") and wasn't doing treatments and had to pay the price by taking a semester off. Her question reads: I've gone so long not doing the things I need to stay … [Read more]

Our First Valentine’s Day to Today’s

February 14, 2012

Way back in 2003, Beautiful and I had our first Valentine's Day together. I was only 24 (barely) and she was only 18 (almost 19) and we looked so young, I wouldn't be the least bit surprised to hear that the wait staff thought we were young … [Read more]

My Perfect Match and How Fostering Fits

February 13, 2012

Fast forward

Time Elapsed Since IVs