You won't find me here unless first prize is a bag of gummy bears.
The truth is I probably do more than you think. The truth is that each of you will probably be "retired" before me because I'll never stop working. My job is 24 hours a day, 7 days a week. My occupation doesn't offer me vacation days but tends to provide me a lot of sick days. The benefits are difficult to find but they're there. My "job" has helped me to appreciate life more than most, to fight to stay alive and to make me a better me.
My full-time job is cystic fibrosis.
My work uniform
I figured I'd explain what it's like to be a dad, a husband, an author, a foundation head, a board member and a little league coach...who just happens to have a terminal disease.
Morning:
I usually wake up around 5:30am and do an hour of therapy which includes 50 minutes of vest treatments (I wear a vest that vibrates in order to bring up mucous from my lungs), 5 minutes of nasal treatments, 30 minutes of hypertonic saline aerosol (done at the same time as the vest), 15 minutes of Pulmozyme aerosol (also done at the same time as the vest) and two puffs of my Xopenex inhaler. I also spend 2 minutes using the Acapella device which requires breathing hard for 3 sets of 10 and spitting out the mucous after each set. Afterwards, I clean all of my nebulizers and the Acapella device which takes 15 to 20 minutes.
Next, Andrea and I get the kids ready for school and one of us takes them.
Our "normal" mornings
Afternoon:
Next, I work out by running 3 to 4 miles on the treadmill and then lifting weights for 30 to 45 minutes.
About 2 hours later, I do my second therapy treatment which is just like the first except I use my Afflovest (battery powered vest device) as opposed to my Hill Rom vest and I don't use Pulmozyme the second time around.
Then I go through my day for the next 5 or 6 hours while some days picking up my kids at carpool, working on my book and doing "normal stuff."
I don't live to work out. On the contrary, I work out in order to live.
Evening:
Finally, anytime between 6pm and 11pm, I do my third treatment of the day which is just like the first one as I use my Hill Rom vest. I only do Pulmozyme in the morning unless I'm really sick. I'm very lucky to have a wife who does so much for our kids. When I'm doing treatments, she is helping with homework or making them dinner. Occasionally, the kids and I work on their homework in my office while I do my treatments. Sometimes I need them to shout questions they may have because of the loud noise that comes from doing my machine. Still it's "normal" for us. One thing is for certain. I almost never miss an opportunity to put my children to bed. It seems silly but it is one of the highlights of my day. I know how fortunate I am to have them as well as their mother in my life.
Just a night out with me.
And also:
On the weekends, I only do the first and last treatments as I like to use the time I could have done the middle treatment to spend time with my kids.
Four times a week I add in the Neti Pot for my nose in the mornings and twice a week I take Miralax for my digestive system.
When I'm really sick, I add a couple of hours of IV meds to my day as well as oral antibiotics.
Every 4 to 6 months I do 30 minutes of TOBI aerosol twice a day.
I take 30 to 40 pills per day mostly with meals.
The best thing about an IV is getting rid of it.
Mental Health:
I also take an antidepressant and see a therapist and psychiatrist a few times a year to deal with my depression and anxiety which has greatly helped me to keep these health issues in check. Chronic disease is sort of like a shark and depression and anxiety are those remora fish that grab hold to them. It's hard to deal with a chronic disease day by day without some sort of mental fatigue.
I think I can relate to a shark.
My Clark Kent "normal" life:
I'm not saying that I focus on my health all day. I spend my time also on the National Alumni board for the Terry College Business School at the University of Georgia, the Adult Council for the Cystic Fibrosis Foundation, the Golf Tournament for my kids' school and I'm the National Chairman of Corporate Sponsorships for the Cystic Fibrosis Foundation. I'm an author working on The Cystic Fibrosis Warrior Project and I head the Wish for Wendy Family Foundation and am currently starting up my own speaking business called Andy Lipman, LLC. I also coach my son's basketball team, my daughter's softball team and my son's baseball team. My most important two jobs though are dad to two awesome children and husband to my amazing wife.
Everyone with CF plays Clark Kent because our disease is often invisible.
In other words, I try to live a normal life though I'm sure most little league coaches don't wear the type of vest that I wear to my "job" everyday. I guess in that way I'm somewhat unique. No, I do not technically have a full-time job anymore. I left my 9 - 5 job at DiversiTech 2 years ago after doing it for 18 years. Sometimes having a chronic disease alone is a full-time job as you can probably tell. I'm sometimes amazed that I did all I did along with a full-time job for nearly two decades.
Cystic fibrosis is not an excuse to be a bad husband, a lazy dad, an unprepared coach or an ungrateful person. If anything, it gives me reasons to excel at all of these tasks. I'm very fortunate to be alive and I know that. When I was born, living past high school was considered a minor miracle. Today, I'm 43. If you'd told me when I was little that I'd have to do 2 to 3 hours of treatments a day to stay alive, I would have taken it. That's why it's hard for me to be bitter about my daily routine.
My prayers have been answered.
So what's retirement like?
I wish!
"All I can say is it's no game of shuffleboard."
Live your dreams and love your life!
Andy
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