Tuesday, September 22, 2009

Follow ups, Discoveries, and Epiphanies, OH MY

What's best for-

In response to yesterday's post about Beauty , I discovered via email, tweet and other new-fangled electronic means that there is a big hilarious discussion among CF women about the topic of makeup and seeing the doctor. Apparently, the manipulative altering of the female appearance does not stop at the hospital door. I hope to post a poll about this on my blog tonight following tonight's post.

Boston readers, email me please. CysticGal@gmail.com

I was on the phone with my dad tonight and he shared with me that he is struggling to "catch up" with all this latest news of my health. I realized he is the same position that many of my family members and friends may be in. This news of transplant, it seems, has surprised him by coming much earlier than he thought. In this conversation, we talked about the changing "face" of CF. Growing up in the 80's, the image of a child struggling with CF looked a lot different than the way that I look right now. First of all, the child in that image was a that, a child, and not a 29 year old woman. It is hard to wrap your head around my lung capacity being so low, while the rest of me is so . . . me.

I always joke, "My lungs aren't on my face," because a lot of people comment to me, "But you don't even look sick." Doctors have said it. Co-workers say it. Friends say it all the time. It's interesting - the idea of "looking sick." As a drama teacher, I might be going on conceptual limb here, but I think that people really mean, "You're not acting sick," but I have now decided that issue is a different blog post.

Which brings me to

I know what my gift from God is. And it's ain't Cystic Fibrosis.

My gift from God is a boundless, undirected, uncontainable energy.

I have good ch'i, man. Or atleast, I've got ch'i. Granted, I do not always harness this energy for good. I do my best to never never use it for evil. But occasionally this boundless energy, with it's, you know, lack of boundaries, is spent unwisely. In any event, I have a lot of mental, spiritual and intellectual energy. I do not always have a great deal of physical energy, but the other zip zip zappping areas of my self, I believe, spill right into the areas that are running low.

One of the first times I was really sick was my junior year of college, over Christmas break. I got sick in the days leading up to flying to see my parents, and then I got really really sick on the flight. I remember that it was hard for me to stand up long enough for the holiday pictures, and I also know that I started coughing up some really nasty stuff that made me realize I was sick in a whole new disgusting way that I had not been sick before. (gross side-note). That holiday break, I wrote my first full length play in two weeks. And it was a pretty good play, you know, for a first play from a 20 year old. I particularly remember being sick with a fever and banging out that play on my first laptop, and I know I felt energized and happy doing it.

Which brings me to the other topic that came up on the phone with my dad. We were talking about my place on the "spectrum" of CF care. This is what must be known about me: I did not go to the doctor every time I was ill. I did not go in the hospital every time I was asked to. I did not, on one occasion, stay in the hospital when I was told to.

Am I a compliant patient? Yes.
Why? I do all of the treatments, exercises, lifestyle changes and etc. that I promise to the doctors to do. 100% of the time.
I do not agree to do things, and then do them 1/2 ass.

That being said, how did I get to this point of 23% lung capacity (FEV1), with the past 4 or 5 years in the low 40s, and yet "look so healthy," have a healthy, active life, achieve what I have in my career, and etc. - and have the energy to take care of myself, even now - while my lungs are failing?

How are you so well, while you are so sick? Well let me tell you this. It is no accident. I have worked really hard for 29 years to maintain this level of overall health.

Some people also might say, "oh you must have a mild case of CF." This is not true. CysticLady and I have a very aggressive genetic mutation of CF.

If I'm at all healthy now, it's because I made it so. There was no luck involved.

I have been empowered over my health decisions for the most part since my early teens. The parenting piece of that is yet another blog post for yet another night. But I know this: my parents did right by me. They raised me to become an independent, willful, funny, honest woman who puts herself first. I am not sure that I was raised to put my medical health first. I know that I was raised to put my whole Self first - for whatever you think of that.

Every single decision that I have made, from what to eat for breakfast to what jobs to pursue, to what friends to keep, and when to stay home and when to go out for dinner, which lovers to keep and which ones to get rid of, what career paths to follow- stem from a basic understanding that I have to put the sum total of my whole Self first.

More on this topic tomorrow as now it is late and you will want to read about this idea in bits. Hopefully, you will not think I am selfish because I plan to spend some time talking about my Self. I think it is a good topic for CG. If there is one thing a cg can do for herself to be healthier, it is certainly to ask herself:

What's best for-


  1. keep this up and i will owe you another UYS donation :)

  2. GREAT post! So true and so common to get that "but you don't LOOK sick" comment. I can't wait for your follow-up posts that you mentioned in this post.

    Also, I just looked, and I can now confirm, my lungs aren't on my face either!



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