made lots of money, how much I don't know

My husband is a big Lynyrd Skynyrd fan. We've seen them twice, it's a good show. Anyway, over at cf2chat, Amy linked a youtube video of Rickey Medlocke on some show.

I was caught by how he talked about how not many people knew he had CF, and how he had a "low grade form." And I thought: Well, there I am in my rock star self, so for some odd reason I had the urge to contact Mr. Medlocke.

I found his agent info, I have no idea if it is legit, and I directed Rickey Medlocke to Cf2chat as well as here. Pretty ambitious of me, wouldn't you say (and maybe a bit cheesey)?

So, ~wave~ if you're reading this Rickey Medlocke, Welcome, Cyster to Fibro (sorry Piper, but I had to steal that!). Ha. :)

I leave you with my favortie Skynryd song:


Can't go wrong with the piano.

Om shanti shanti shanti Om

The mailman delivered my mail to my neighbors' house. It was a letter from the local CF council. My neighbor returned it and said, "That's what you have, right?" I've lived here for 7 years and it is the first time that Cf has ever come up. When I was on IVs last year they called to ask what was going on, but I just said I had a bad infection. I didn't feel like going into details. I was sort of embarrassed by the mail thing. Partly because it just seemed like it was a secret, which seems dumb.


I went to yoga on Thursday, the first time I have been oback since 2006! I practiced Kripalu Yoga for five years religiously at a beautiful private studio. It was fabulous, so I am very yoga spoiled, but once I had baby #2 and stopped working it was just too hard and too expensive to keep going. I have been a yoga snob about going to yoga at the Y though, after having had such a great experience with my instructor at Tree of lIfe - despite the fact that yoga at the Y is free with your memebership. Anyway, finally my friend convinced me to go. Once I got over trying to compare the two in my mind and just gave into the practice, it was great. I am very sore. What I was capable of doing yogically 5 years ago is NOT what I can do now - though I tried a few times and gave my self a friggin charlie horse. Silly. I will go back though. I didn't realize how much I missed it.

I'm about to get sick. The guy on the elliptical next to me is constantly coughing up phlem! Its been 30 minutes and I can't take it much longer!

The above was posted by one of my friends as their status update on FB. Oy. She doesn't know I have CF, I don't think and probably the guy was a 100 year old smoker, but I still felt like posting back a snarky comment. I didn't.

you'll get anything with that evil smile

When I signed in I felt like I had something important to say, but I don't.

I can feel the PA regrowth a lot this last week, as I get closer to my next round of Colistin (my third). Interesting yet sucky. Makes it so obvious I NEED the drug, I can't put it off.

I turned 32 yesterday. 32 is weird, Cf aside. I've never minded getting older, even when I wasn't paying too much attention to Cf. I think part of it was I always looked young, and I hated it. It seems funny to me now when I think about how upset that made me. I mean when I was 12 my dad would tell people I was 8 to get me into places for free and no one ever batted an eye. When I was 20 he tried the same move to get me into The Louvre for free. When I was like 14 it was hard to try to get older boys to like me (as every 14 year old girl desires) because I looked 10.

Though it is sad to report that the world of looking younger ended about age 29. Now I rarely get carded. Maybe I get mistaken for 29, but rarely that (what was interesting is I went salsa dancing a few weeks ago with my friend and this boy Salvador was flirting with me (so exciting for an old married gal!), he was about twenty three or four and for some reason he was guessing my age - I think I told him I was married and too old for him - anyway, he guessed it at 27 - which means you know he was trying to be nice without being ridiculous...so 27 seemed kind of old for him to guessing at out of kindness, if that makes sense. Ah, vanity.

I digress, I don't mind birthdays.

Mt step son had a baseball game today, league championship, and they won. Exciting.

My boy has his championship swim meet tomorrow. He is swiiming fly, back, breast, and free. He won't do great, but maybe there is hope he could place in the top 12. (I also thought he could win the triathalon and he was like 56 out of 86, so not near the top. I have moon eyes for the kids). We have to be there at the crack of dawn. bah.

The baby got her first haircut today. She looks so old. (in referene to the earlier portion of this post, she doesn't actually look old at all, she looks about 2.5, her age, she just looks less baby and more kid)

I get a new camera for my brithday - my other one broke after a spill on the ice at Christmas time, so pics soon to follow. Until then, I leave you with Mona.

the ants go marching one by one hurrah hurrah

DISGUSTING! OMFG I AM GOING TO PUKE.

There is one thing I hate in this world, and I don't hate much, but I hate earwigs (technically more than one thing, but we'll think of all earwigs as one big earwig). I hate them. They give me the creeps so bad. I don't kill any bugs, I don't hate any bugs, but I HATE earwigs. I still don't kill them, cuz killing bugs grosses me out, but I get all fruity tooty screamy when I see them, like stand on a chair and point kinda freaked out.

So this morning I am nebbing. But my compressor keeps acting all wierd. I turned it off, then on, unhooked the tubing and reattached it and it would work fine for a few minutes then stop again. I got through my treatment and when I unhooked the tubing and took the neb cup off a fucking earwig fell out of the bottom of the tubing. OMG. I was inhaling earwig germs. I want to die. I have no idea how I did not see it in there. i can only guess there was some moisture in the end of the tubing and it crawled in. I feel like I am going to die from some unknown earwig disease. serioously. I want to be admitted immediately. gawd.

In other news, I have lost 7 pounds. The secret to my success? No more soda nd juice - that's been the biggest factor. So I guess if you want to gain, drink a coke in the morning, a few glasses of juice throughout the day and then like 5 rum and cokes before bed at night. Surefire way to pack on the pounds.

I met my old lover on the street last night

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.

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.

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.