In the movie Network, Peter Finch screams, “we’re mad as hell and we’re not going take it anymore.”
I’m mad as hell that I have cystic fibrosis. Unfortunately, I have to learn to take it. If I started screaming “I’m not going to take it anymore,” I’d only really have one option. And, though I’ve given much thought to that option, I will not be exercising it at this time.
So, I may be mad as hell, but I have to take it. I have no choice. Yet.
Having cystic fibrosis goes hand in hand with searching for symptoms health information on the web. At least for me it does.
When my health goes south, I head to the Internet.
This afternoon, it felt like a I had a fever, but my temp was just a hair higher than normal. I was burning up and my eyes were puffy with shiners. Hospital time?
It’s hard to figure out what’s wrong using a search because I can always find some poor person who has had the exact symptoms I’ve typed in. It’s too easy to prove any medical claim using the Internet because so much “truthiness” exists and someone at some point has had exactly what I’ve typed in.
So, I had to trust my gut and figure that the cipro might be causing some problems. By narrowing the search with key information, I found more realistic answers for my situation. Is this any different than a visit to the doctor?
An Internet search for health information matches my doctor visits: The better the information I supply, the more accurate the diagnosis.
After four decades of fighting cystic fibrosis, I’ve finally figured out what I’m up against: Random acts of bacteria.
I used to think the President was where the buck stopped. Now, after the health care debacle, it’s congress who really has the power to do nothing and get paid for it – not to mention they get government health care, which just pours salt in the wound. How many of them really care anymore about the people they represent? The people who are declaring bankruptcy due to medical bills.
My new tiered system for prescriptions came in the mail today. Though I am grateful that I have insurance, the company is going to make me pay for having a genetic disease, cystic fibrosis, which was beyond my control. Every nickel, dime and dollar they can squeeze from me – that’s the goal. They find creative ways to make me pay more, to help them make a larger profit.
Call me Lemon. I’m being squeezed dry.
Coughing up blood derails me. Two days ago I felt great. Now I’ve got hemoptysis.
Such a cruel disease. It teases you with good health for a few days and then in a blink, takes it away. I almost felt normal for a couple of days. Not anymore. Back to having cf.
Not much else to say tonight. Time to start cipro. Yay.
I’ve run conference calls where I’m the only one speaking to a group of competing vendors, who stay quiet in a game of business poker. It’s feels uncomfortable to speak and share project information with no one else speaking at all. Did they hear me? Was I clear? Do they think I’m . . . . I just move forward and quiet the little voice in my head. I’m doing that now.
This blog feels a little like those calls.
And, as no one is speaking back at this point, I can pretty much say . . . anything. Great. How’s this:
I have cystic fibrosis. I’m in my late 40s, have a wife and daughter and I am the luckiest person alive.
I have survived a genetic disease that was supposed to kill me years ago.
My story is not unique. There are others just like me.
However, for each of us who has survived cystic fibrosis, there are others who have died and made us (mainly me) look more heroic than we really are (than I really am). They are the heroes, the children lost to cf and the parents who witnessed their suffering. I don’t use the word hero by accident.
Can you imagine being 10 years old and spending your short life running out of breath every day?
That’s why I say I am the luckiest person alive – it’s by luck that I’m here – with a catch. Much of the luck happened to me; but some of it I made.
So, I have three goals for this blog:
- Find the humor in this horrible disease. (Is it possible? We’ll see. Thank you to the Unknown Comic, who I parody here.)
- Share the lessons I’ve learned (the ones that haven’t killed me)
- Share the daily challenges of having cf.
Thank you for reading. I know you have other choices and ways to fill your time.