I've been thinking about sex. Cystic sex, represent, yo.
Seriously though, how I have to arrange the pillows in a certain way, I can't have my head lower than my body or I will cough, and a coughing fit does not exactly set the mood. How I get more out of breath than he does, the fact that we had to have medical intervention to convieve our daughter because of my overly thick cervical mucous...all of these things that set me apart from other lovers he's had (other lovers? no! I am the ONLY one!), from the "regular" folks.
I recently friended an old lover of my own on facebook (don't tell my husband, as far as he knows, he is the only one. kidding). He never knew I had Cf. We didn't get that far. I do remember how he'd spend the night and in the mornings especially, when I have my usual coughing fit, I would lay very still in bed, breathing just so, trying to hold in the coughing fit until I could get to a bathroom and hack silently (as I often do, you know, that cough so hard it's like a car engine trying to start) into a towel. and I find that I want to post less Cf related stuff now that I know he sees my page. That makes me feel bad. Ashamed of being ashamed. and I am not ashamed. I just....well, I guess as far as that guy goes, I feel like he had this image in his mind of me and having Cf would somehow change that image....?
Sometimes I feel guilty about Cf, around other CFers. I wonder if it is unkind to talk about my kids or my flabby belly, things that flaunt my health. Part of me thinks, no. My life and situation is what it is, and I should be proud and grateful and not try to hide anything; part of me thinks sometimes I should know better when to shut up.
But then I am also reminded that no matter where I fit into the Cf community, I still belong there. I know that I'm not the only one who makes love propped up on pillows, who coughs in the middle of sex - and maybe not even the only one who once had a lover who never knew her hard abs and lithe thighs were related to a 50% FEV1 (oh, body of my twenties, where art thou?).
Even sex can't get past this disease, can it? All I know, is, however things progress for me, I know I'll still find a way to be kinky with 02 tubing.
Thursday, June 11, 2009
Tuesday, June 9, 2009
so to all you kids all across the land, take it from me, parents just don't understand
Last night while I was nebbing I thought I had some hemo. Turns out, it was just the old sinus cavity.
Some times it is still hard - as proactive and aware as I try to be - to grasp how Cf could affect me...will probably affect me in the future. I know I talk about this a lot, but I grapple with it often. Sort of this fear/denial thing. I gues it's true with anything - smokers who don't quit because they feel fine, people with high cholesterol who still eat brats and cheeseburgers all the time - gotta have a heart attack to "get it." But I don't want that to be me, so I try very hard to listen and learn from others who have progressed farther with this disease, but still, that little piece of me insists it "won't be me."
The other day my husband was talking about my son and he said, "when he is in his twenties and you're dead and gone..." and I was like SAY WHAT? I got really pissed off about it. I mean, my son will be ten this year, and I'd like to think I have a few good years left in me. It made me wonder though, I complain that my husband doesn't really understand or care to learn about Cf all that much, so what exactly he is thinking?! (too bad he can't good life insurance on me - ha!) (and, in his defense, his mom died when he was 21 and he said he was just thinking about his own situation when he spoke, which is probably true, but still, what a foot in the mouth!)
Finally. Parents. I decided to back out of discussions on the forum, but i wanted to talk about what I think about CF parents. I have two of them, you know. and they did for me the best they could.
As a kid though, i really did not want them involved in my CF care. In fact, at age 12 I stopped letting my mother come in with me on clinic appointments and by 16 she stopped coming with me at all. I know she did not know how to handle Cf, but I appreciate that she trusted in me to take care of myself. Despite some major deviations from that path (may my mother never know!), I think I've done OK.
Still. I think CF parents are a wonderful resource, a caring group of individuals, certainly our adovocates and biggest fundraisers....but, as with any other life experience, no matter how they love us, they CAN NOT KNOW LIFE WITH CF AS WE DO. This doesn't reduce their experience as paretns or their role in the CF culture, it only separates parents and patients. This is not a bad thing. I would rather be a CFer than a Cf parent any day, as I know the way I feel for my kids, and I would never want to see thenm suffer with a disease such as this.
Nevertheless, it irks me that my mom or someone else's mom or dad or sibling or whatever, would ever dare to insinuate that they can know life with this disease or even begin to feel my pain. My uncle stated it beautifully (he has Cf and is 13 years post TX) when he was in town over Thanksgiving and told my mother, "You don't hurt for her CF the way she does." So true. Yes, I feel pain when my children are hurt, but their experience is not my own. My mother feels guilty I have Cf, she feels sad my life might be shortened, she worries when I am sick...but Cf is mine and mine alone. I appreciate that she tries to understand that.
Some times it is still hard - as proactive and aware as I try to be - to grasp how Cf could affect me...will probably affect me in the future. I know I talk about this a lot, but I grapple with it often. Sort of this fear/denial thing. I gues it's true with anything - smokers who don't quit because they feel fine, people with high cholesterol who still eat brats and cheeseburgers all the time - gotta have a heart attack to "get it." But I don't want that to be me, so I try very hard to listen and learn from others who have progressed farther with this disease, but still, that little piece of me insists it "won't be me."
The other day my husband was talking about my son and he said, "when he is in his twenties and you're dead and gone..." and I was like SAY WHAT? I got really pissed off about it. I mean, my son will be ten this year, and I'd like to think I have a few good years left in me. It made me wonder though, I complain that my husband doesn't really understand or care to learn about Cf all that much, so what exactly he is thinking?! (too bad he can't good life insurance on me - ha!) (and, in his defense, his mom died when he was 21 and he said he was just thinking about his own situation when he spoke, which is probably true, but still, what a foot in the mouth!)
Finally. Parents. I decided to back out of discussions on the forum, but i wanted to talk about what I think about CF parents. I have two of them, you know. and they did for me the best they could.
As a kid though, i really did not want them involved in my CF care. In fact, at age 12 I stopped letting my mother come in with me on clinic appointments and by 16 she stopped coming with me at all. I know she did not know how to handle Cf, but I appreciate that she trusted in me to take care of myself. Despite some major deviations from that path (may my mother never know!), I think I've done OK.
Still. I think CF parents are a wonderful resource, a caring group of individuals, certainly our adovocates and biggest fundraisers....but, as with any other life experience, no matter how they love us, they CAN NOT KNOW LIFE WITH CF AS WE DO. This doesn't reduce their experience as paretns or their role in the CF culture, it only separates parents and patients. This is not a bad thing. I would rather be a CFer than a Cf parent any day, as I know the way I feel for my kids, and I would never want to see thenm suffer with a disease such as this.
Nevertheless, it irks me that my mom or someone else's mom or dad or sibling or whatever, would ever dare to insinuate that they can know life with this disease or even begin to feel my pain. My uncle stated it beautifully (he has Cf and is 13 years post TX) when he was in town over Thanksgiving and told my mother, "You don't hurt for her CF the way she does." So true. Yes, I feel pain when my children are hurt, but their experience is not my own. My mother feels guilty I have Cf, she feels sad my life might be shortened, she worries when I am sick...but Cf is mine and mine alone. I appreciate that she tries to understand that.
Wednesday, June 3, 2009
oooh, witchy woman, see how high she flies
I need to confess.
My picture to your right is probably 6-8 years old, I"m not sure. I don't really look like that anymotr. Here is what happened:
Not to be mean to Sabrina, of course. Acoodring to God's word People magazine, she's lost her weight. Not I. But I do drink diet now. go me.
Many moons ago, I heard that I looked like both Sabrina the Teenaged witch or Buffy the Vampire Slayer.
So once, I was at a bar and this guy was like, "You know who you look like" all snapping his fingers at me. And I was like, "Uh, Buffy?" cuz I heard that all the time, and the guy was like. "Uh, yeah right" all disgusted and making me feel like an idiot. He is kind of a big wig in town now and whenever I see his face in the paper I still want to spit at him.
Soooo not related to CF.
My picture to your right is probably 6-8 years old, I"m not sure. I don't really look like that anymotr. Here is what happened:
Not to be mean to Sabrina, of course. Acoodring to God's word People magazine, she's lost her weight. Not I. But I do drink diet now. go me.
Many moons ago, I heard that I looked like both Sabrina the Teenaged witch or Buffy the Vampire Slayer.
So once, I was at a bar and this guy was like, "You know who you look like" all snapping his fingers at me. And I was like, "Uh, Buffy?" cuz I heard that all the time, and the guy was like. "Uh, yeah right" all disgusted and making me feel like an idiot. He is kind of a big wig in town now and whenever I see his face in the paper I still want to spit at him.
Soooo not related to CF.
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