love love me do, you know I love you

I know, I know, I have been a blogger terrible. But we moved, and I have this killer class this semester, and I did an art show that had me crocheting until my fingerrs were raw, and I've just been busy.

So I finally get a breath tonight. I have a midterm paper due tomorrow that if I read it one more time I might puke, so I decided to play internet.
I have ben getting all my ducks aligned for my master's thesis which I will be starting to write in earnest in December. I have decided to use Cf as part of the dealio. I don't know why, some sort of masochistic impulse, I think. But I am doing a memoir, basically, and I mean, really, what kind of memoir does a CFer write that leaves out the Cf part (the kind I would have written five years ago, maybe). I am a little nervous and a little excited about it. I am excited to have a creative focus, I tend to lose sight of things without cemented goals, so this will keep me busy.

In health news, I had a bone density scan today and I vist an allergist next week and I think I am going to do a prophylactic round of IVs soon since I have met my deductible for the year. I really don't want to, but I can't hlep but think if it holds things off another year or two like it did the last time, then I am in good shape. We'll see. Ivs and this class might be more than I can handle.

My boy has been having a hard time in school this year and I am close to taking out a few 4th grade teachers. I have been in contact with the principal and I am working on getting him a 504 - so you know, they can stop taking away his 15 minutes of recess and making him write lines instead (who on earth thinks this is a good idea or even an adequate punishment - did these people study ANY of the same education sources I did? and has anyone even heard of Alfie Kohn???) SO that has taken up a lot of my mental capacity each day. Rue being a mom.

So anyway, hello CF friends, and whatever other random people read this blog - I know you're out there, I see you make return visits, but who are you??? Reveal yourselves.

I love you all!

she's like a rainbow

We are in the midst of moving. boo. I don't mind unpaking - that is kinda fun, but packing and hauling heavy shit around - yuk.

I had clinic today. Mostly I just want to record what happened for my own records. So, according to them I have lost 11 lbs - yeah! according to me it is 14 - either way I am definitely down a pant size, in fact my pants have a big pooch in the belly of empty fabric - yea for success. I would still be OK if I lost 10 more lbs, but I won't complain if I can lost about 7 more.

My PFTS were down to 69 (74 at last visit, I think) and I was sooo congested and rattley I had not really noticed until I tried to do PFTS. So the gal (a different PT than usual) had me do an albuterol treatment, something I have never done at clinic (serioulsy) and I was back to 74. So I guess that is OK, but I sounded pretty bad and could barley make it to the end or take that last deep breath in.

I asked for a bone density test, cholesterol. and all my vitamin panels (my D has been low for like a year) - look at me being proactive.

I also requested to go on IVs at some point before the year is over since I have met my deductible and my insurance is paying all my bills now. I want a good clean out, especially since - though my labs two two weeks ago again showed susceptibility to cipro - we seem to be wavering on the availability of orals. So, I am guesing end of OCtober, early November we'll do them unless I get sick before that.

Anyway, that is about the gist of it. Nothing too exciting. I will take some house pics when we get settled - we're going from not quite 1000 sq feet to nealry 3000 so I am pretty excited, but busy busy busy!

and I try to draw the line but it ends up running down the middle of me most of the time

Today is my 5th wedding anniversary. We are also signing on our new house today! So that makes today a good day. Now that I have said the good stuff, let the complaining begin.

I went and blew a spit wad at the lab and picked up my Rx - but I don't think I am going to take it until Sunday - I don't know, we have a motorcycle trip planned tomorrow, it is suppossed to be in the 90s and I have not forgotten last years abx California trip which resulted in a horrid sunburn rash, plus, I ain't drivin' so I want to drink my liver into oblivion before I go on the Lev...that being said, I feel awful. I actually feel today the way I used to feel everyday after work, back when PFTs were low and I wasn't doing treatments. I didn't realize how bad I used to feel. But I recognize this achey, tired, worn down, I-can't-breathe feeling. It actually amazes me that I used to feel this way a lot. I don't miss it and if anything, this little bout has reminded me why I need to be vigilant with my health (how soon we forget?).

I've written before about my husband. For all his positives, "getting" CF is not one of them. I would like to think that his dire love for me keeps him in denial of the reality of my disease, but this evil little voice sometimes wants me to believe maybe he really just doesn't care (cue the sad, pity music). The reality is I just don't think he has a clue with how to deal with me and CF and has not taken the time (or felt the need) to educate himself. But what makes this hard is that I would like a bit of compassion when I feel this way. I am so tired, I don't want to do anything. Last night yoga about killed me and then, laying in shivasana (relaxation) I just concentrated the whole tiem on NOT coughing, which is tiring in itself. But he doesn't get it. Yesterday I said, "I don't feel good" (which, I am told I say a lot) and he mumbled something about being a "complainer." On top of learning that my future in health care might be all needles all the time, I was just crushed.Argh. How 'bout a big green wad of FUCK YOU.

Before I go on, I want to add a slight addendum. I tend to be very real and frank about how things are. If they are good, I say they are good, if they are great, I am estatic, but i have no problem saying when something is fucked up. So complaining about this one part of my relationship with my husband, not hiding or pretending that things are any way but they way they are in relation to CF (or my health, or kids, or job, or whatever) is by no means a full picture about how things are - it is just this one part that needs reconstruction.

Anyway. I don't know what I am going to do. I want to feel good. I want to have fun tomorrow. I want to get into my new house. I want I want I want....

wakin' up to an alarm stickin' needles in your arm

If today weren't the dogz shit, I dunno whut was.

I called the clinic for an abx. Even after treatments (vest, Hypsersal, colistin, advair and albuterol) I am a gnarly rattly mess. My chest hurts, I feel like I can't breathe and no matter what I cannot get stuff to come up. yum. So, my great idea was I would call the clinic, get come cipro and maybe some pred to hold me over until I go in on the 20th. Cipro always works well and I have not taken it in close to a year. Well LO AND FUCKING BEHOLD, according to my last sputum (May) I am resistant to cipro AND Levaquin. terfuckinrific. Actually my NP said the levaquin came back as intermediate or something - I have never seen that on a lab before, but whatever. So I am going on the lev until I go in on the 20th. Or until my new labs come back and say anything different (going to hack one up for that tomorrow). We are moving during the next few weeks, and I don't want a PICC for that, so we figured unless I get a lot worse, even if I end up needing IVs, hopefully the Lev and Colistin can hold that off until after I move.

This sucks ass. I mean, I knew it would happen, especially as I have totally overused those two abx in the last few years in order to avoid IVS, but what a bummer. Plus my chest hurts, as it did last time I got sick, so maybe a new Cf era is beginning - pain and needles.

I am going to yoga. Hope I can breathe in there.

pisser.

I'm a poet and don't know it but my feet show it, and theyr're Longfellows

I am published!

In other news, I am sick. My chest hurts. HURTS. This is a Colistin month so I am hoping that will keep things at bay. We are closing on a new house this Friday (our anniversary, so I can tell everyone my husband bought me a house for my 5th anniversary. aw.) and I cannot be sick to move. I hate moving at it is, let alone hacking up chunks and thus peeing my pants everytime I try to move a box.

oh, and please take my poll ------->

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.