Life with CF — Page 8

Adjusting to Life As an “Old CFer”

November 21, 2011

Nearly three years ago, I turned 30 and was rewarded with an awesome stainless steel grill to mark the milestone. Thanks, Beautiful! Since then, my appetite has decreased, my weight has (finally) increased, and I’ve been met with some really bad days recovering from things that used to pose no problem. Since returning from our second cross-country trip to and from Ohio in 8 weeks, I thought it’d be good to discuss how our bodies change as we get older.

I used to run all day and all night, only getting a couple of hours of sleep. When dating, I’d get up at 4am, be at work by 5am, get off work at 3:30, drive across town, and wait for Beautiful to get out of class and stay out with her until midnight… or later. Rinse and repeat. On days she worked, I’d go to Barnes & Noble and catch some winks in the comfy chairs until her shift was over. We did this for days at a time.

Stupid.

I used to have a very physical job in construction material testing. I moved several hundred pounds of 40-pound concrete cylinders by 7am and then moved, packed, and tested a solid ton of dirt throughout the day. Other days, I lugged around a 60-lb radioactive density tester around development sites that I stuck into the ground by driving an 18″ stake into the packed foundations of roads waiting to be paved.

The reality of aging with CF

What I’ve learned (but very slowly taken action as a result of knowing) is that I need far longer to recover from activity than I used to AND from doing things that I do with others. If we spend all day out and about on vacation, it’s pretty much a given that I need to rest the next day. Even things as simple as being outside my comfort zone and being social for a weekend takes its toll on me. Some things that have made me sick in the last 3 years or that I’ve learned the need to recover from:

travel by air or car
weekend conferences (even a 1-day conference) [Read more…]

Anniversary 2011 Trip Photos

October 26, 2011

We’re most of the way through our two-week vacation in Ohio/Niagara Falls now and have had a great time relaxing, visiting, and celebrating our anniversary. We’ve also been going crazy with our new camera. I’ve had my ups and downs of stamina walking about and seeing the sights around the hilly falls and have finally recovered from all of that exertion.

Not letting the cold or hills is how I outran CF last weekend. Sometimes it’s the small things that mean the most. Here are some photo highlights of our trip thus far. Hope you enjoy seeing them as much as I’ve enjoyed taking and editing them (especially liked editing the ones of Beautiful).

We walked down the falls on Saturday morning, heading out at 6am to get these shots and spent a good 90 minutes there.

Beautiful and I took some photos of each other on the farm Sunday. What a hottie!

I’ve gone out to take some photos for fun, too. I think we’ll need a bigger hard drive before too long if we keep up this pace.

I’ve been good about doing my treatments morning and night, even though I’m sequestered to the living room but I am making good progress on my Netflix shows on my iPhone!

Tonight we are heading over to my uncle’s house for an early Thanksgiving dinner while 2 of the 3 “kids” are here. I’m sure my aunt will come for the real dinner next month, so I guess most everyone gets 3 huge holiday dinners this year. I don’t mind THAT a bit!

Stay strong, breathe easy people.

Transplant Fund “Angel”

September 25, 2011

I’ve mentioned a few times on finance-related posts before that we have several savings accounts that are directly associated with my CF. We’ve come a long way since we got married with our financial planning, and every time I wonder where our money goes, I’m reminded of how much we need to have sitting out of touch for medical events – medical events that would have sunk us faster than the Titanic had they happened 4 years ago.

One is our annual deductible/out-of-pocket savings account. We know each year that my first Rx is a $500 co-pay and we have a set maximum out-of-pocket that we are due to spend, so, with Beautiful being as wise and frugal as she is beautiful and kind, decided to set aside a set amount each month throughout the year to have that money banked in January. You may remember how useful that was this year when I had surgery on the 6th day of the year. No freaking out here.

The other account is our “absolutely don’t ever touch this unless/until Jesse has his lung transplant” fund. We’ve been saving for at least a year to put money away for the event of a transplant. About the time I created this site, we had been following several CFers who’d had transplants and saw how long they were out of work. Depending on complications with meds and stomach issues, they seemed to range from 3-6 months off the job.

Enough with the background and setup – I can’t wait to tell you all our exciting news.

Scene One

So about a month ago, my top-notch WordPress connections sent me a client in a pickle with a design gone bad and an urgent need to get her site back online. Since it was a personal recommendation from one of the top referrals, I made extra effort to make a good impression with my customer service skills and we got to know each other pretty quickly. We got her site running with a basic design and ultra-security in just a couple of hours with the intention to re-design in November with the full employ of my skills. Soon came a LinkedIn and Facebook request. I obliged.

Within another day I was asked something to the effect of when we were expecting a little Petersen running around. I sent her an e-mail with a quick line that I usually don’t let clients into my inner circle this quickly, but with her medical background, I sent her the link to my fostering category. About an hour later, after watching her go from post to post to page to page on the site, she sent another e-mail that she was crying tears of joy for us.

[Read more…]

Growing up With CF – Normal or Not

September 19, 2011

My usual eloquence is gone today, so pardon the skitterish path my thoughts take as I write this abnormal mess. It’s more for others – the younger generation coming along behind those of us already decidedly in what is known as “adulthood.” I fully intend on this to be more questions than statements to promote discussion and give hope to our young friends who may be struggling with their health, fitting in, and wondering if they will make it to our stage of life.

Remember when you had to sit inside on a sunny day doing treatments whilst your friends or siblings were outside playing? Remember missing school and falling behind your classmates and your teachers giving you extra work to catch back up to advance to the next grade? Remember feeling different because you had to go see the nurse every day to get your enzymes for lunch?

How did you feel when you weren’t as big as your classmates. How often were you picked last for teams in gym class? Did you have to give up playing your favorite sport(s) at some point because you couldn’t keep up (at best) or because it would be too dangerous, or because you didn’t make the team due to something CF-related (at worst)? Did you get turned down for prom or homecoming or not ask your crush because you were a bit of an outcast?

How often did you think you wouldn’t make it to high school/college/marriage? Do you still have fears of not making it to your next goal? What do you do to overcome those fears and keep on going? Were your fears unreasonable because things were not often as bad as they seemed at the time? Have you had to give up dreams of having a certain profession because there’s no way you can do it with CF? Have you lost friends or relatives to CF? When all is “normal,” do you even think about having CF?

What is the longest time you’ve gone without IVs/hospital stays? What’s the shortest time between IVs/hospital stays?

What is your greatest accomplishment – most especially despite having CF?

Let’s all contribute a little story about growing up to encourage our young fibros and cysters.

Life goes on, and so will yours. Don’t dwell on the worst case. Plan for them, but don’t dwell.