From the Blogposts » inbox

Be Compliant… or Else!

Fatboy - new shirtIt’s sad to say, but I’m talking to/about myself with this one. I’ve been writing a post for 4 days now, but I’m in a completely different state of mind now, so I’ll post it later as a reflective piece. Today, I’m kicking butt and taking names again, but Friday wasn’t so much of the same.

I went for an unscheduled clinic visit Friday because Tuesday was a day of misery. I was wheezing and whistling. Each breath was labored. I was coughing up junk with each cough and I was having dozens of spazzes every day. The only things not happening were bleeding or fever.

I was down almost 10 lbs since Feb. 18th, but I blew the same PFTs: 35%. It didn’t make sense how I could feel this bad and still have 97% O2 sats while constantly being out of breath. 97%!! I don’t have that when I feel like a friggin’ ox!

The doctor came in and took a look at my numbers and what I wasn’t doing every day came from Sue… and me. He asked, “Why?”

Chronic entrepreneur

I’ve been under a lot of stress making sure we have enough money to pay our bills each month now that Beautiful stays home. The amount our budget has gone up since I worked in the office is profound, and now we’ve subtracted her income from the mix. It sure makes budgeting easier to just say, “This is how much you need to earn this month,” but I feel the physical effects of the stress in my lungs.

[Read more…]

Fatboy vs the TSA – Traveling with Medical Stuff

Pills

This was the EASY part of packing

We were stressing over traveling up to Ohio this weekend with all of my medicine and medical supplies that included my $11,000 Vest and 4 days of Cayston and Pulmozyme, along with all of my other “less expensive” meds. Of course, we were also n more possible conflict with the needles needed to mix and draw out my colistin from its vials, so I was expecting a nightmare experience.

The morning before, I read up on everything on the Southwest site and the TSA site about traveling with medical disabilities and medical supplies. It seemed like it was all in our favor to be a breeze, so long as we declared early on that we were going to be a pain in the butt. I declared so early, the guy seemed annoyed that I mentioned that I had special medical equipment with me and the second guy said to just get in the line with everyone else.

[Read more…]

Not Enough Hours in the Day Without Trio

That Is EverythingI’ve mused in past articles, particularly those about my compliance and having the Trio for my nebulizer being the integral part of that compliance. Last night, as we were laying in front of the boob tube (no, not watching boobs, being boobs), I had to get up and start my nebs because Beautiful has insisted that I stop going to bed at 1 or 2am watching my site stats from my midnight posts.

She caught herself protesting my abandoning her to go to the couch, but realized before she was done that I was making a sacrifice, too, because I was comfortable and enjoying spending time with her – it was not my preference to get up.

As I made it into the kitchen, she said something to the effect of, “Aerosols, aerosols, aerosols! If you didn’t have the eFlow, you’d be doing them all day long, seriously! You’d start in the morning, and by the time you were done, it’d be time to do your afternoon one, and then we’d eat and you’d just start over again… for another 3 hours.” I’d literally be doing 6-8 hours of aerosols per day. I’m sorry, but that’s not a compatible way to live a life and “live a life.” You can’t hold down a job doing that, and even running  your own business from the couch would be hard, too.

[Read more…]

My Nebulizer’s “Dirty Head” for Colistin and Hyper-Sal 7% Saline

3 headsI mentioned on Twitter or the site (I’m getting so old now, I can’t remember anything) that I was using my “dirty head” at the moment. Someone asked for clarification, so I thought it to be worthy of a post now, so I can explain how I roll with 5 treatments in a row.

Pre-requisite reading: Fatboy’s Nebulizer Life

Now that you know my routine, here is the tip part of the write-up on the method I’ve learned after 4 years of having eFlows. I touched on it when talking about my 7% saline dose. Did you catch it? When I receive a new shipment of colistin, PSI is nice enough to send me a new Trio head. Getting Foundation Care to send a new head was like pulling teeth – it was every 3rd shipment and the metal disc was all bubbly and clogged by then. To say I’m happy with PSI would be a great understatement.

[Read more…]