Friday, November 28, 2008

and I knew to lay low when he came home drinkin' cuz I knew him like the back of my hand

Another holiday come and gone. We spend Thanksgiving with my husband's family, and it's nice because they are sooo much less pretentious than my family (my dad's side). Don't get me wrong, I love my family, but is nice to eat fried turkey on Thanksgiving paper plates and crack open a beer while watching football (not that I watch football) versus sitting around a formal dining table drinking wine and eating off of china - I like that too - but I do that with my dad's family all the time, so the relaxed atmosphere is nice.

My mom's family was in town too. This includes my uncle who has CF (but he is 12 years post tx). We went out for pizza with my mom and the kids and his new wife on Wed and I had a nice conversation with my uncle. He was good at explaining to my mom about why her reaction to my CF is so effing annoying to me. My mom is the queen of guilt and pity and I find it very frustrating.

I had been talking to my uncle about how I was trying to come into my own with this disease, be more open about it, less ashamed and I made a comment that my mom had had sort of a don't see don't tell attitude about it (mixed with oh-my-poor-baby-I'm-so-sorry for added flavor)...but my uncle told me that he didn't even know he had CF until 3rd grade! And that is because a teacher announced it to the class and betrated him in front of them when he didn't know what it was, then made him get an encyclopedia and read the definition to the class! Hell of all hells! I still feel his pain when I write that. But you can see that denial is well embedded in our family.

He was sort of pushing me getting admitted if I felt I needed to. I don't feel I need to, though I am still waiting on cultures to ome back. I am def. leaning toward IVS I think.

He also have me some great advice about dealing with my husband. He suggested I explain Cf in sort of mechanical terms: this is how the lungs work, this is what CF does to them etc. I though that was a great idea, though I have yet to sit down and talk with the hubster (<--- I can't believe I just wrote 'the hubster'. Ah, well, I'll let it stay).

All-in-all it was a nice holiday and I was glad to have spent the time with those that I did get to see.

This next week will be filled with wrapping up my paper for class and then I get to start C-mas shopping. I enjoy C-mas shopping, especially now that I have a daughter. I can get lost in the Barbie aisle in toys r-us. And I swore I'd never let my kids play with that stuff.

Sunday, November 23, 2008

it's the most wonderful time of the year

I don't care what PFTs or even labs say. Soemthing is amiss here. Camo green is sooo back. yuk.

Friday, November 21, 2008

in your time

For some reason, the comments from this post didn't get emailed to me, so I never realized anyone commented - that, or I have been hitting the bottle waaayyyy too hard at night (possible, but I don't think so).

Anyway, I just thought there were a few good comments on there that I wanted to flesh out here in my writing.

As with my previous post, I have not been feeling too great. I was on orals a few weeks ago. We went to Chicago and when my cousin escorted me to the el platform to visit a friend, I realized that I was really, really winded from walking with her. My friend commented on it when I called to tell him I was on my way. I blamed it on her walking too quickly. But the next day we were going to a Bears game, and I was having a hard time keeping up with my husband. He kept making comments about us missing the first quarter because I was slow. What didn't help was that the baby wanted only me to carry her (and any mom will tell you carrying a toddler in a winter coat is a sucky job) but I could only go a few feet before I had to put her down, cough (with my legs crossed so I wouldn't pee my pants) and then try again. It sucked.

So, as per my above linked post about my husband not"getting" CF these days, on the way home from that trip I commented (apparently more than once - note to self: stop thinking out loud)) that I really wasn't feeling well. What was running through my mind was: why don't I feel well after a round of cipro? Cipro always works. What if I got some nasty bug on the el? I feel crappy. Why was I so out of breath? etc. All I said though was, "I don't feel well." My husband (yes, I love him, really I do, but this was not a shining moment) replied with,"Why don't you stop complaining and do something about it?" I was hurt and angry. What more should I do? I was trying to do something about it! I felt he was insensitive and mean. We got into another "You-don't-get-it" argument.

But here is the thing. Two comments were made in my other post that I have been thinking about. One is that idea that I am coming from denial into an uneasyacceptance of CF. This is so true. I am trying to be proactive, to do the right things to prolong my good health, but I am not at ease with my identitiy as a cystic. I am still fighting it. And much of my battle is inside. My fears and worries have not all surfaced yet becuase in that is a greater admission of acceptance that I am not sure I am ready to share. Which leads to the second comment. The idea that I am reponsible for the image of CF that my husband has. I am the one who put it in his mind in the first place and it is up to me to change it - though I can't expect his vision to change along with mine - he comes at this from a total loss. He knew nothing of CF before me. He has gone along for the ride easily because it has been an easy ride. Somw of my fears and worries have not come to the surface yet. I fear wearing O2 to my kid's school functrions when they get older. I fear my first hospital stay....legitimate fears for a CFers I think, but hard to grasp for someone who is just observing this disease in their rather healthy mate. And I have not shared all of my fears about CF with him...some of them are still deep within me, larger than just the physical manifestations...shame at being imperfect, embarrassment, loathing of pity, afraid of admitting that I'll likely die young.... My husband only knows what I have shared with him and in his POV, why should I worry about those things when they are not part of my present state?

I mentioned to him recently that depending on what my cultures and PFTS showed, I may be in for another round of IVs. I could see on his face saddness, and confusion. I seem just fine to him. He hasn't even noticed me coughing more. He doesn't know this body, he doesn't know CF...all he understands is the present situation. If that means IVs, then he'll be there, helping me along the way. I think maybe that is all I can expect from him right now. He will learn along with me, at his own pace. I'm not sure I can ask for more.

jumpin' jack flash it's a gas gas gas

Ah, yes. The PFT lab. The reasons I hate hospitals, besides being nasty germ receptacles, are all the dumb protocols and dumb people who work in them. That being said, I actually had a decent RT. He was surprized I'd never been in the PFT lab before, but made an interesting comment that their "adult cystics vary so much it is hard to have an exact protocol that they all fit into." Thank you very much, Mr. RT, it's nice ot hear someone realize that. I expected the usual don't look like you have CF, you must be very healthy, you're very lucky...etc. etc. - the susal junk medical people say when they find I have CF. HE did ask if I was new to the area, but whatever.

So the skinny is: My PFTs are actually up a point to 73%. I have to say, I am pleased, but had hoped for a larger jump after 2 months of swimming. Either way, that was good news. They did all this other jazz I never had before - where you hold your breath or they give you o2 or check gas exchanges....all that was within normal limits he said - I didn't get print outs on it, all I was really interested was the FEV1 - though all that other stuff was interesting. My small airways are still gasping at 33% though - no improvement there.

So unless my culture shows I am growing some strange bug, I think I am just in for another round of orals - or maybe adding in an inhaled abx. I dunno. I am definitely coughing a lot mroe recently though, and what I was spitting up the other day can be dscried as nothing less than camo colored green....but that seems ot have abated (right after I call the doc, of course), so I have no answer for what is going on except that maybe I just don't respond to cipro as well as I used to. Which will make me sad. Cipro used to me one mean mother, and it seems awfully fast to have worn out its welcome.

And the snow. Perhaps today I will shovel - that will be a lung cleaner-outer if ever there was one.

Wednesday, November 12, 2008


I'm sure many of you have seen this, but if you haven't, I found it amusing.

I am working on a paper for class about CF as a disability and I read an interesting article about Bob Flanagan that someone posted on another webiste I frequent. The article referred to him as "the poster child from hell" which I just got a kick out of, and I think I am going to use that "poster child" aspect as a theme in the paper...but that is about as far as I have gotten.

I was familiar with Flanagan before reading the article, though I hadn't paid him a whole lot of attention despite a voyeurisitc interest in bdsm. Anyway.

Thursday, November 6, 2008

cuz I'm all alone, there's no one here beside me

I've come to the sad realization that my husband does not "get" CF. I truly believe he wants to be supportive, but because he is rather uneducated about Cf, he is failing.

When we met, I did no treatments. I wasn't very interested in Cf. Denial was my middle name. I was probably at a lower lung function than I am now. I was abusing my body in ways I won't mention and just did not have my health very high on my priority list. I think I just mentioned CF in passing once like "oh, I have Cf. It's no big deal. I am not like everyone else who has it." blah blah blah - we already know this story.

But I think that mentality has stuck with him. Last night we argued about me working. I am not against working, though I certianly like NOT working, I just mentioned I was a little scared. That it would be hard to handle treatments and exercise and a full time job and I am afraid of teaching again because I can see in hindsight how often I was sick while I was teaching - I mean schools are GROSS.

My husband told me I was using Cf as a crutch to be lazy, that I was never like this before - that teaching is a cushy job, one that requires little of me and should have no effect on my health. I know in typing this, on a blog read primarily by other CFers, that it is making him sound like a total dick - and he isn't, but he just doesn't know and I don't know how to make him get it.

I was thinking last night that next time I get sick I should just get admitted. that maybe 2 weeks of mom in the hospital would show him where this could be headed. But I don't really want that. I know that day will come soon enough. He doesn't know that that day will come though, and that is the problem.

I feel sort of dejected (rejected). How do you get someone to see something that they just don't/can't see? You can't, obviously.

I am more afraid now than I ever was because right now I truly feel I am alone in this fight.