Cystic Fibrosis Fatboy

Wow! What was that owie? You guys know me by now – pretty high pain threshold – so when something hurts, something has to be wrong. At the moment, my entire left side of joints is out of whack and my friends on Facebook are telling me it’s from our 19-hour drive on Friday. Stay tuned for a more-expert opinion…

I’ve been put on notice by one of my dearest friends to never do a drive like that again without a good store of rest in my tank. Thanks, Phil. You’re a real pal. I’ll do my best to rest up after the wedding and be in better shape when we arrive home than when we arrived here.

Through all of the Facebook back and forth, my aunt saw my predicament and offered her physical therapy diagnosis. She was certain of it when I said that even my big toe joints are red and tender, so I’m going to proceed based on her expertise in her field. Driving with one leg out and the other tucked away pinches your sciatic nerve and causes swelling and spasms all the way down to your big toe. My left shoulder is out of whack out of sheer lack of movement, but everything else is connected to that nerve: my left hip just started after church and feels like it’s on fire, my left knee, the left side of my neck, and both of my big toes feel arthritic.

Her remedy includes icing the areas to reduce the swelling and getting electrical stimulation at the chiropractor tomorrow. No need for a cortisone shot or anything drastic like that. Physiologically, she said the same thing happens to her when she drives from TX to OH, so she knows of this drive I just did from FL to OH. On our return trip, I’ll be sure to get out and walk every 2-3 hours… more than just around the back of the car to get gas.

It’s “nice” to have “normal” peoples’ problems. It doesn’t happen very often. I wart here, an ingrown hair there, and an occasional hemorrhoid or cyst just about wraps up the totality of the non-CF-related issues I’ve gone to my PCP for since I was 18.

What “normal” aches and pains or things have you started to experience as a result of living past your life expectancy?

Clinic went pretty well Friday. It’s clear that I got out of shape from a few days of not walking due to the constant raining that TS Debby brought us last week. My blood pressure was up to 135/70 (usually 110/60-ish) and my O2 sats were down to 96% after the rushed walk back to the triage room.

Good news: my weight was back up to 123. That, of course does affect the PFT numbers, which came soon after triage.

My first blow was 36%. Then I got a 37%. My 3rd and final blow was a 38%. Bill decided to give me a 4th attempt (I never remember getting 4 tries) and blew another 38%. This is down from 42% in March, but I do weigh more now and definitely don’t feel as good as I did that day, yet I still feel much better than I did at the end of January before Spiriva and walking/running.

Overall, there wasn’t any concern about my stats unless they prove to be a trend, so I have to maintain for my next appointment. I don’t have any intention of not improving. They also gave me some Diflucan for my thrush (nystatin isn’t taking care of it) and a refill of Megace to take a spoon while I’m on a weight-gain kick. Since I don’t want man boobs again, I’m not intending to take more than needed longer than needed just to keep my weight up.

How fostering has affected things

We’ve had several discussions about the wear and tear fostering has on me in the past few weeks since becoming licensed. Between the extra physical and emotional energy it takes to have a toddler around 24/7 and the added scheduling stress ensuring I work enough hours to keep our income up, it’s definitely taken its toll on my body.

Based on how I was losing weight and coughing, Beautiful was even getting iffy on whether I’d need IVs when we returned from our vacation. I’ve fought off 2 colds since May and probably saw a bit of a dip in my performance due to that, but I mostly need to get back into my old walk/run routine and take my camera along again. To not do those fun things from before that really worked for me has started to make me a shell of my former self.

We’ve decided that we’ll need a good month or two off between longer placements like what we have now and a week or so off after the shorter placements, just to recover. We feel that this is the most fair thing to do for a foster in our lives, anyway. If we’re rested and back on a schedule and solid business footing each time, a child is coming into the best possible environment we can offer. Right now, we’re “getting along” just like any other parents of a 2 1/2 year old do.

Right now, we’re preparing for a 2-week vacation, which includes a 1,000-mile car ride each way. Boy got a fantastic donation of a very plush car seat from a friend in town who’s done having kids, so he should be riding in high fashion right behind me. We plan on driving through the night and arrive sometime around lunchtime the next day. Hopefully Atlanta is only “moderately insane” at 10pm, as I plan on hitting the GA/TN line around midnight – our halfway point.

I’ve got my quarterly clinic in the morning at my CF center at TGH. Bright and early at 7am, to be exact, so I’ll be dragging my carcass out of bed at 4:45 to get my treatments and breakfast in before heading out the door at 6am. To practice, I got up at 5:15 today, before my normal 6:30-6:45 that we’ve started to do just to have some quiet time in the morning before Boy wakes up.

Since I’ve been so busy, I thought I’d make this a bit of a State of the Fatboy post. Everyone likes bulleted lists, right? Let’s start with one of those:

• since starting fostering, my weight dropped down to 113 as a result of
• a total lack of appetite (more on this later)
• my evening weigh-ins are putting in ~125 before bed now, so that’s great
• I was getting back into walking/running when TS Debbie stuck us with 4 straight days of rain
• overall, I feel good, but not as good as my annual in March

What’s going good

To combat my lack of appetite, I started taking the last of my Rx of Megace. Just 2 spoons per day, far less than the 5mL 3x daily on the label. That’s all I need to have the munchies all day and really pack away the food. Before I got the Megace out, I could get up, go for my walk, skip breakfast and lunch, and then pick through my dinner without any enjoyment or drive. It was miserable! I’ll be discussing a refill of Megace to take this small dose.

Business has some new stuff going on that is pretty cool, but everything aside from my appetite and new weight gain is wishy-washy on both sides of good and bad.

Needs improvement

We’ve come to expect our constant “life will be better when…” feelings that we get when we get into a time where we’re merely subsisting and getting through our days. Our days now revolve around a toddler (which got much better after we went Super Nanny on him 2 weeks ago and got boundaries re-established) and all of the different ways he can throw off our rhythm and routine. Shoot, I’ve been in a funk trying to work, trying to help Beautiful get some time to do what she used to do and still get rest, trying to rest myself (hasn’t happened), and everything just seems to be off at the moment.

We’re ready for a break, I think, but breaks don’t come with kids. We’re definitely going to consider if we need to take a month or two between placements to be able to keep up my health and the business’ health. I’ll feel a bit much like a lower form of dad if we do that, but I’m not going to throw the idea of taking care of myself so that I can take care of others.

If I’m sick everyone will suffer.

Going on nearly 28 months now without IVs, still able to run 1/2 mile without hemoptysis, and eager to see what my PFTs are after 2 months as a foster dad.