Cystic Fibrosis Fatboy — Page 77 — The daily quest to gain weight

Packing for Vacation Is Huge with Cystic Fibrosis

June 12, 2010

We are off to the Smoky Mountains at 6am Saturday!

Preparation started days ago with the clothing and suitcase items, but now Beautiful is sitting at the table filling my weekly pill container for next week after dumping tomorrow’s meds on the counter for me to take in the morning. We’ve got a box of snacks for Day 1 of driving, Day 2 of driving, and a stash to keep safe for our drive back home so we don’t eat it all while we’re there. I think I’m supposed to down about 20,000 calories on Day 1 of driving by the looks of what we’ve got in there!

Since eating is a full-time job for me, we went over the menu for the week since there is a full kitchen and are taking turns making meals. We figured out what things we needed to supplement with more food for me without bothering everyone else. Wouldn’t want the whole family coming home rolly-polly now, would we? Some days, it was an omelet after breakfast, others, it was a snack or a Stouffer’s lasasgna. I’ll be taking Megase all week, so the eating extra really shouldn’t be a problem, and since my biggest fear is losing weight, we are taking care of that. If all goes well, I’ll be fat and happy when we get back next weekend.

We’ve packed the Vest, put nebulizer vials in baggies for either the box or cooler, filled the pill container, gathered my enzymes, set out my inhalers, and put my eFlows on the armrest of the couch instead of properly back in their place in the basket. I gathered any possible narcotics I might need, as well as my Ambien for a really good night’s sleep every night.

Beautiful was really surprised that I wanted to bring my Vest along because of my strong determination to be normal, but it makes such a difference now that I’ve been doing it, I don’t want to risk having a week-long wheeze just because we left it here. It comes with a nice travel roller for the airports and everything, even though we’re driving. Where I’ll do it or how we’ll work out when I do it is still up in the air, but we’re bringing it.

Monday will be a regular installment of “Things CFers Do” followed by the week’s activities if no one minds non-CF articles. Speak now or for the rest of the week, hold your peace.

The Power of a Single-minded Approach

June 11, 2010

It seems foolish of me – borderline selfish – to have spent over $3,000 in the last year to finish my college education when we had other pressing medical financial issues to deal with. Now that it’s done, I don’t regret it because I can see the rewards for all of that hard work “paying off” now and I can count those feelings that we should have gone about things differently as inconsequential.

There is a power in undivided attention to one task. Of course, I don’t just have one task since eating is still a full-time job and I can never stop being a husband, but at least I don’t have to decide whether to run my business or do school now.

Last year, business was doing great until late in the Fall semester when I was full-bore school. We were limping along, but I was determined to finish in May without having wasted the Spring semester tuition just to try to increase revenue – that would have been a double penalty in the end: paying tuition twice and dragging out the courses to graduate.

Don’t give up

If I had a dollar for every time in the last 10 years that I wanted to give up on getting my college degree, I wouldn’t need to work. Conversely, if I had a dollar for every time I kicked myself for not finishing at any point after 2001, my descendants would never have to work. I am my own toughest critic. I can’t count on both hands and feet the number of evenings and late, late, late nights I was either working on homework or trying to get business done after being at school all day in the last 9 months. Those times were hard. “Is a degree worth this?” “How badly do I want this?”

There are winners and losers of every walk and health status, so these questions are not a CF thing. Piper Beatty has a law degree. Then there are dudes with 30 piercings, goth makeup, and mom in tow – at adult clinic, probably to be sure he went. There are times that things at the moment can be so bad that you don’t know if taking the next step to get to the end goal is worth it. What’s one more aerosol when you take four? What’s one more class when you have 20 to go? What are 5 more FEV percentage points when you’re all the way down at 35%? Sandy is getting pretty frustrated now, thinking that her niece doesn’t remember her when she wasn’t always sick. I’ll see what I can do to help you all from my experiences.

Fatboy’s tips on personal success

Remember why you’re doing what you’re doing. [Read more…]

Top Rules to Break in the Hospital

June 10, 2010

Please only do these antics if you are aware of your situation while in the can. Make sure your CF doctor even knows you’re there by calling the clinic number and getting whomever is on call. They NEED to know you are there!

I don’t get put in the can much at all – and usually only for blockages. Beautiful has only seen me in the hospital for my lungs once since she’s known me, and it was even before we were dating. Geez, I think it was something like February of 2001 when I was in for 3 days! Even overnight stays can be miserable if you don’t take things into your own hands.

I don’t try to be this way to be obstinate, though I am a very stubborn person, as is Beautiful, but it’s the fact that I’m in the hospital for observation, not control. My life is to be lived just as it were at home on home IVs, only they want me close to do more blood tests and to monitor my O₂ levels.

Here are Fatboy’s “recommended” rules to break when in the can.

Bring your street clothes to put on ASAP in your room. Grab baggy PJ bottoms and white undershirts to wear. No one wants to see your butt or more any more than you want to show them. If the nurses protest, insist that they complain to your CF doctor. You can guess what their response will be about such a ridiculous complaint from a floor nurse.

[Read more…]

Making Cystic Fibrosis a Little Easier

June 9, 2010

I married a neat-freak. I’ve grown accustomed to it, and appreciate it immensely now as a vast improvement over my former way of life. That’s not to say that Beautiful and I haven’t had our fair share of verbal disagreements over where to put my medical supplies to make it easier for me. I’m going to come completely clean with this admission:

If it is out of sight, it is literally out of my mind.

I need visual reminders to do my meds, as I grew up in an environment where a stack or a pile was fine, as long as it was a stack. Over time, my mind grew used to seeing things of non-function in the same place every day. To this day, if I leave something somewhere (say, on the stairs) for more than a day, I will walk by it dozens of times as if it has become a piece of furniture to walk around. That being the case, you can only imagine how hard it is for me to remember something that is put away.

Besides, who wants to drag out your RespirTech inCourage Vest every day? We had to come up with a creative solution. I honestly can’t remember which came first, the vest or the end tables, but I think it was the tables. Maybe Beautiful will fill us in on that in the comments. I posed that if she would let me store it under the end table on the side of the couch I use to work most of the day, I would do it every day. Then came the “discussion” about what to do with the hoses and vest. LOL! It does fit nicely back there, but I have to be careful to not scrape the hoses on the paint on the wall.

We have placed my vitamins nicely on the table where I keep my drink(s) – notice 2 coasters so I can have both a Boost Plus and a chaser at the same time – along with my treasure chest of various pills that don’t go in the daily container. Everything looks nice so far, but it gets even better!

[Read more…]

Packing for Vacation Is Huge with Cystic Fibrosis

June 12, 2010

We are off to the Smoky Mountains at 6am Saturday! Preparation started days ago with the clothing and suitcase items, but now Beautiful is sitting at the table filling my weekly pill container for next week after dumping tomorrow's meds on the … [Read more]

The Power of a Single-minded Approach

June 11, 2010

It seems foolish of me - borderline selfish - to have spent over $3,000 in the last year to finish my college education when we had other pressing medical financial issues to deal with. Now that it's done, I don't regret it because I can see the … [Read more]

Top Rules to Break in the Hospital

June 10, 2010

Please only do these antics if you are aware of your situation while in the can. Make sure your CF doctor even knows you're there by calling the clinic number and getting whomever is on call. They NEED to know you are there! I don't get put in the … [Read more]

Making Cystic Fibrosis a Little Easier

June 9, 2010

I married a neat-freak. I've grown accustomed to it, and appreciate it immensely now as a vast improvement over my former way of life. That's not to say that Beautiful and I haven't had our fair share of verbal disagreements over where to put my … [Read more]

Don’t give up

Fatboy’s tips on personal success

Time Elapsed Since IVs