old blog 3

Today I am sad about Cf.

It is kind of like I just got diagnosed. After 30 years, it is all too real. I have to thank my dad everyday of my life for all those swim practices and "ranger runs" that he made me take to clear out my lungs. Thank you for loving me this much dad. Despite all my crying: the man would literally drag me when I refused to run, all the while telling me it was for my own good - and all of a sudden, I just "got it." I am 30 years old and I get it now. I have to keep my lungs clear (duh!).

I didn't do my vest last night. I've had it for a year now and I am pretty compliant with it. I do my HTS every morning now, too. But my dad was here last night and I am still kind of embarrassed about the contraption and so I just didn't do it. Later, I laid in bed awake feeling guilty and nervous and imagining the bugs reclaiming their space. This disease is going to kill me. I cannot tell you for how many years I was sure that *I* would be different. I was not like "them." And I was lucky. I have been very lucky. I have a good set of mutated genes, somehow. But how long does luck last? this thought is in my mind all the time lately.

I keep thinking about IVs. I know this is the direction this disease is taking me and I am still having such a hard time wrapping my mind around that idea. I feel this sort of meshing of my identity with having Cf rather than a separation of the two: shannon has Cf. But I am still afraid with that admission. I am afraid to see the worry in my parent's eyes the first time I have to go to the hospital. The pity from my husband, fear from my children. The first time. I guess after 30 years we should thank our stars, but I don't want to see the naked worry. I don't want to have to leave my kids. My pride is not ready for this yet. Foolish girl.

I am afraid my children will be embarrassed of me: that I will cough somewhere and they will feel humiliated. Maybe I don't give them enough credit, but i was a selfish child and I think I might have been had I been my own mother. I think of wearing oxygen to their school fuctions and it makes my heart skip a beat. I don't want that to be me. And since I am so slow to catch on here, I feel like I am lagging in my self care. Why aren't I exercising? I think I am still waiting for my dad to come grab my hand and force me, swatting me in the legs with a stick when I lag behind. Those days are done. I am responsible for myself now. Maybe that's the scariest part of all. This is all up to me.
So a lot has happened for me Cf-wise in the last year. The biggest thing, is I finally got it. I have CF. Sort of like a frying pan to the head. So I've been thinking a lot of denial and proactivity and the course I am going to take from here on out.

Somethings came to light for me in how I got to be 30 years old without understanding and taking ownership of my disease.

I wrote this reply in a recent post about atypical CF:

Well that's the thing. When I was born in 1977 the prognosis wasn't so good: life expectancy of 18: mist tents, PT, antibiotics, etc.

But I kep doing fine. Healthy as could be. So then the docs started saying I was "Mild" and "not the normal case" and we believed that -that I was somehow the lucky one.

Even when I had my gene typing done and found I had Delta f508 and S549n I was told: well see, that one gene isn't very common, must be why you are so healthy.

Turns out both are class II mutations, so that second gene has nothing to do with why I was healthy. it was more good other genes and parents forcing me to be physically active and luck.

I wish that someone would have sat me down years ago and explained it to me in different terms instead of making me feel like my CF was "better" than everyone elses as it has been much harder to come to terms with as an adult.

Then, a real doozy. My uncle is 11 years post TX. All this time I thought he just went in, had his tx and there you go - a whole new life, a whole new set of lungs. Because he is from Chicago, I connected him and Q to talk about the medical situation there. Peeking in on Q's blog the other day, I read this:

Last night, I talked with Jim, a transplant survivor from Chicago. We discussed first year woes. He had them all: three bouts of rejection, a fungus they thought was eating his brain, the same reoperation I had, and a cardiac arrest 12 hours out of surgery. He had the damned nausea like me; he dropped down to 100 pounds at 5-10. Now he's 11 years out, almost 160, working with a personal trainer at the gym. He doesn't wear a mask or check his bread for mold anymore. He wants not to live in a bubble. It was good to hear his story and refreshing to listen to him express his outlook. He does not cling. He knows that all of this is an outrageous gamble, that there are a thousand things ready to go wrong at all times, weird outcomes galore, but that being alive is better than the alternative. We have to let outcomes simply be.

I felt like the rug had been pulled right out from under me. I know my family well enough to know that this information was kept from me. Maybe not out of anything but love, but still, I can just hear my mom saying, "We don't want to scare Shannon."

I only knew one other person IRL with Cf (as in a friend, of course I see other people at clinic) and she was always "sicker" than me. She had a port and spent a lot of time in the hospital: things I didn't understand. She got her call for lungs a few years ago, but sadly, she never made it out of the hospital. After her funeeral, I remember talking with my mom about how different I felt her life had been than mine and my mom said something to the effect of, "Well, that's why I never liked to get your girls together too much." As in, I didn't want you to see the ugly side of CF.

So maybe I inherited this denial from my mom. I know my dad spent (and still does) a great deal of time talking to me about my health - keeping my lungs clear, eating right - but still with that idea that if I do those thngs, then Cf won't "get" me.

So right now I'm just mulling a year spent nebbing and vesting and doing things for Cf that I have never done before. I don't know where the future with this disease is going to lead me, I don't know how internalized these words I've typed actually are. I am saying them, here to all of you on the CF boards, but I still don't know if I am ready to start telling the world.

Maybe I'll have CF coming out party. I'll pass out some of Q's CF Denial shirts and we'll all wear masks and I'll get some nitrous oxide to nebulize and we can take turns using the vest while we laugh and laugh until we cough so hard we can't breathe any more.
I know. I know so many of you have been through so much more, that I feel I have no right to sit here and complain. But it's my blog and I am going to.