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.

Never ending sto-orey

I went to the eye doc today because my eye has been jacked since my surgery - and my friends cat last night (I am allergic to cats) made an already bad situation worse...and I have allergic conjunctivitis. Yippee for me. So I got gels and drops and all kinds of good stuff for my eye. But he says I should be right as rain in that department sometime in the next 48 hours. PLease oh please oh please.


I knew when I got this surgery that it would just be a snowball effect of issues, and so far, I think it is.

I am trying to get by on advil for most of today. So far so good, it just feels like someone smashed my nose with a brick, but it's OK.

I want to add, I don't REALLY look like Barbara Streisand now. I think I look the same, though I can tell a slight difference in my nose, I don't know if anyone else would. I will have to post some beore and after pics to see if anyone can really tell. I just thought it was kind of funny if you came out of surgery with a schnaz when you went in with a rather straight and uneventful nose.and now, because I must cease and assist (what do they say? Cease and desist?) all complaining, I bring you, a HAPPY MOMENT (drum roll, please)..............................

good grief. I can't think of a single happy thing to say. I am going to go stick my head in the oven now.

make my funk a P funk, I wants to get funked up

There are days when I just cannot get a grasp on this disease.

Now, granted, I am also the girl who sometimes looks at human beings and thinks how freaking wierd we are...eyes, mouths, the things we do and say...I mean life itself is just this huge trippy alien that is outside the realm of even trying to understand -

but CF. What the hell is this? and WHY?

I know there are no answers here. It's like thinking about dying of CF. I can't think about that in any way that is any more real to me than pondering the cosmos or how an ant can carry a potato chip for miles on end. But I feel like I'm sort of just waiting. Waiting for the minute when it is all going to seem real to me. I don't know when that will be. What moment will I stop and think, "but yes, of course, CF...how ever did I miss you all these years?" Because I haven't missed it. It just IS.

This is so rambley. I just get caught up in the whole thing when I think of how we are all just spiraling around in this maze looking for the way out, some closer to the exit than others...

I don't know what I'm saying.

I guess Cf became real to me as I started to see it through the eyes of a mother. As a mother I can empathaize and worry and want to fight CF. As myself, I just want to sit back and turn off the lights and let whatever will be be.

Surely there has to be some answer for this fate. I'm just waiting for it to come whirling out of the sky on a spaceship with little green pseudomona men.

The Wild Iris

God, CF sucks.

Whenever my eloquent words (see above) fail, I give you those of someone else.


The Wild Iris


At the end of my suffering
there was a door.

Hear me out: that which you call death
I remember.

Overhead, noises, branches of the pine shifting.
Then nothing. The weak sun
flickered over the dry surface.

It is terrible to survive
as consciousness
buried in the dark earth.

Then it was over: that which you fear, being
a soul and unable
to speak, ending abruptly, the stiff earth
bending a little. And what I took to be
birds darting in low shrubs.

You who do not remember
passage from the other world
I tell you I could speak again: whatever
returns from oblivion returns
to find a voice:

from the center of my life came
a great fountain, deep blue
shadows on azure seawater.

--Louise Gluck