Today is my tri-monthly Hopkins appointment.
When I was younger, I looked forward to these. The nurses all knew my name and were happy to see me. And I was rewarded with a king-sized Snickers bar to take home. I felt special.
But at some point my feelings changed and it’s become something I dread.
The nurses are still nice, asking me questions about what’s going on in my life. I even still get a Snickers bar at the end.
But over the past few years, having finally acknowledged the seriousness of this disease… after finally emerging from the comfort of denial… these appointments have become something I fear.
Meeting with specialists, getting my lung function tested, listening to what new bacteria is growing in my lungs…
All it does is serve as a reminder of what this disease is doing to my body. That my life will most likely be shortened. That whenever the end of my life does come, it won’t be easy or painless. That the people that love me, especially Mike, are affected by this, too…
And I don’t feel special anymore. Just different. Like an outsider.
I’ve tried to go to these appointments with a positive attitude. After all, that’s how I approach living with cystic fibrosis every day. But sometimes, hyping myself up does more harm than good.
Seeing my lung function stay realtively the same (in the mid 60s) apointment after appointment, makes me feel constantly discouraged.
Because until a cure is found, these appointments will be HARD.
I’ve adopted a new attitude. Instead of telling myself that THIS appointment will be different, I look at it as something to just get through.
So that’s what I’m doing today. Just getting through.
You are so brave, and it is not a surprise that these appointments are something you fear. It is scary!
Sometimes you do just need to get through things. You did, and will continue to do so!
GOOD LUCK!
On “That my life will most likely be shortened.” They told Ashley’s parents that she wouldn’t make it past ten years old. She’ll turn 30 later this year.
Keep your head up, friend. I hope your appointment goes well today.
I hope you are doing well, I do have a question for you, how does Mike deal with everything? I am sure it’s equally hard on you both but I would be interested to know how he copes and deals with someone he loves having CF. That is if you two feel comfortable sharing.
p.s we should hangout soon!
Yikes! I would hate the appointments too!
I was listening to a segment on NPR the other day about CF and it made me think of you.
http://www.npr.org/blogs/health/2012/02/01/146166743/cystic-fibrosis-drug-wins-fda-approval
Is it weird to hear something on the radio and think about a stranger that you only know through their blog? Anyways, I found myself hoping that this might lead to a cure for you.