Thursday, December 31, 2009

I heard somebody whisper, "please adore me"

Every month for about the last ten years I have been subscribing to a magazine called The Sun. The magazine hosts a collection of interviews, poems, and narrative pieces, both fiction and nonfiction. I find it to be one of the most honest collections about the human experience as I have even encountered, though often readers complain it is too dark, too sad.

Within the magazine, there is a section called "Readers Write." Each month the magazine suggests a topic and readers write in about it, much like a warm-up exercize in any creative writing class. What results is an interesting amalgam of experiences: sad, funny, some true, some maybe not.

I am set to start writing my master's thesis this spring and my proposal has something to do with Cf (not ready to get too into it yet, it is an ever changing endeavor). In light of that, I have been rereading old journals and blogs (I have been writing online for 10 years as well!). I thought tonight (this morning), instead of the same ole same old New YEar's blog, I would take this month's Sun Reader's Write and use that as a topic to start focusing on how I want to go about writing this paper, to give this blog a little oomph, and to also challenege you, o blog reader. I challenge you to address the same topic in my comments or on your own blog. I think it might make for some very interesting reading, and no, it need not be Cf focused...just go with it! Even better yet, link here to what you write (if you wish, or hell, don't).

So this month's The Sun Reader's Write topic is Narrow Escapes.

It's late and I need to sit on this topic for a minute. Happy New Year

Sunday, December 20, 2009

this whole damn world is on fire

My FEV1 is 58%. It was 71 in November and 74 before that. 25/75 was 22, 37 previously. The question is WTF? I really want to blame the TOBI my doc has me trying in place of colistin, as i recall the last time I tried TOBI, a la 2006, I was at 50% and felt much the same I do now, tight, congested, and SOB.

My fears are 1) that the acinetobacter I ~maybe~ cultured last month is fo' realz, 2) that this is somehow related to H1N1 and maybe permanent and c) that i have to accept a new baseline that doesn't start with 7_.

My fears are coupled in a few other ways, too. Several people are waiting or new lungs, one beautiful girl just got a set...hope abounds in this, the season of hope. and I sure don't want to rain on anyone's parade. But man.

You know what got me? this. This story about a girl I didn't even know. I just felt pissed off. I guess I was in the right mental space to have this affect me the way it did, in light of the recent carnage seen in Cfland. But I just felt delated: that there is hope in tx, that there is such devastation. I remember Paul telling me once something along the lines of he'd wished he'd never let himself believe there was another life out there wiating for him, those few good months he had. I heard him, you know, but I didn't really understand. I mean, I thought I did. But for whatever reason, that article really put the spit in the cup for me.

I always assumed I would get a tx, I mean ever since my uncle had one and did so well with it. The dude is 57 and 13 years out - just doesn't get a whole lot better than that. I thought that was the way it was. Tx and wah-la. I know different now...

and so I haven't been sleeping well. Well, no, I have, but it is induced in some way - because I can't get the demons to back off. These little green guys that come in and stare at the back of my head when I'm trying to sleep, whispering all the nasty fears that I know we all have right into my ear.

My daughter crawls into bed with me pretty much every night. I just stare at her. She loves me so much, and the thought that I could leave her motherless before she is grown is so suffocatingly devastating I can hardly live with myself.

Which makes me feel, that when the time comes, if I make it there, I will have to try for the TX. Though I don't know that I want to. I don't know if I can handle smashed up hopes. I don't know how to change my thinking, either. and the one person I would have talked about all this with is gone.

so, fuck.

Tuesday, December 15, 2009

all the songs with goodbye in them are too cliche for my title

I'm not saying this is my last Paul post, I just don't work quite that way, but in my process, it was time to write y letter. I debated keeping this private, but if i can't share it with people who understand...well...??


I haven’t been able to write this letter yet, because I am not ready to say goodbye. I hope you heard me this morning when I spoke to you while getting the paper. I hope that the day I learned you died, when I “felt” you in the kitchen, I hope that was real. You’re the first person who made me want to believe in heaven even if you didn't.

I remember your first pms to me at I had posted about ahimsa, and we chatted just a bit. You invited me to your time, though I wasn’t really listening. Then you pmed me in chat a few times when you were listed. Remember you told me how they asked if you had tattoos and used drugs as if they were mutually inclusive? On my thirtieth birthday you told me you were glad I was born. And you shared a birthday with my son, which I always found auspicious for us!

It was after tx, when I’d added that playlist to my blog and you gave me a cheers for liking Freakwater that we really started connecting. We talked music and Cf denial and loving ourselves. You told me of meeting the Buddhists, when you saw the flyer. You actually still chatted with me all the nights I typedlkie this an expctyedf you tobe abel to r ead whatI wrtoe.

I remember we talked about “getting” it, and you said, “your name is ‘wanderlost’, how can you not get it?” My heart just filled with pride, to know we “got” one another. We talked a lot about being lonely. We talked about our dads and picking out our own switches, about past lovers, and marriage. We joked about that “other life” we might have had…except I wasn’t really joking, I think you know. You know I stalked you, and while I never hid in a trashcan to find you, I always hunted you down online.

I will watch for the thugs at DQ, I will always remember when we dressed up as dogs in an overcoat at the movies, I'll try to stay out of the hole, I will take Cf on my own terms.

I remember how worried I was about you last fall with the rejection and the Pepe stuff. That is when I bought the Ganesha, which I was so happy to be able to give you at the Heartland and which you graciously accepted despite the germ thing. Thanks for that.

I wasn’t around as much lately, I know. Always busy. And the box wasn’t working right – that is the biggest thing I hope you know wherever you are, that I just couldn’t get that damn thing to work.

I wish I would have come up when I’d offered. I would have even thought about doing both things you’d asked, even if you were joking. I told you not to take the one back, and I still hope you meant it. I know you were too sick to go out and still didn’t want my bugs in your apartment, but had we known, we could have made such a time of it!

I love you Paul. You know I always carry a lot of worry and regret, but one thing I can feel good about is I know I told you I loved you, more than once. I think I remember the first time I said it, instead of my usual “much love.” And you told me, too. For that I am eternally grateful.

I don’t want to say goodbye. So I won’t. I could say "knight shug," But I think I’ll say what you always said when I had to go, which kind of irked me:


Monday, December 14, 2009

what a beautiful piece of heartache this has all turned out to be

I left when it was still night, the moon was out. I made a “Paul mix” for the drive: some of his songs, some we’d shared a liking for, some that reminded me of him. I headed west. When the Chicago skyline came into view it was Neko Case “I wish I was the moon tonight.” Paul told me he used to have Neko Case’s number. I don’t doubt it one bit.

I was super early, so I pulled into a Starbucks and gathered my thoughts. Tears had threatened and spilled the whole drive, and choking down my granola yogurt was no better. I went over what I was going to say. Paul’s mom asked me to say a few words during the service, as I was the only representative there who knew him in the online world. Public speaking is not my greatest achievement. While I don’t mind it, I do get nervous and tend to talk quickly. Further, crying in front of people is something I like to avoid.

I entered the church and was immediately greeted by Paul’s mom. She introduced me to the family and showed me the pictures of Paul they had gathered for the ceremony. How fun! Paul as a baby, Paul going to the prom (can you imagine!), Paul’s travels. In some pictures, I barely recognized him, it wasn’t the Paul I had ever seen, others were certainly the Paul Q I knew. I started to cry, of course. I cry all the time, but Paul’s aunts hugged me, we cried together.

The ceremony was a Catholic mass. If you’ve been to a funeral, you know how they go. Cousins did readings; we sang “Ave Maria,” read a psalm. There was a very cool moment when was all joined hands, down and across the aisles to say the “Our Father” and I could feel all the energy being shared. I love that stuff!

The speakers were two of Paul’s friends, his brother, and me. The first speaker told a story about picking Paul up at the hospital once, and how walking in he heard a guitar strumming and this deep Johnny Cash voice booming out of the hospital room. He said you could judge a person by if they “got” Paul or not. I was so pleased to be one of those who “got” him. I was next.

I gave Paul’s aunt the paper I spoke from, but the gist (Paul taught me it’s ‘gist’ not ‘jist’ btw) of what I said is this (from my starbucks draft):

Hi, I’m Shannon, I am a friend of Paul’s and like Paul, I have CF. We met about three years ago on a Cf website. Paul, or Q, as he was known online was already a well-known figure in the CF world. I was just coming to grips with the reality of the disease, and Paul reached out to me immediately. From there our friendship grew roots much deeper than just CF.

I got to spend some time with Paul in “real life” and one of our meetings was in my hometown of South Bend. I met Paul at his hotel and we walked to get something to eat. As we walked, we were just joking around about life and CF and how we both had country singer ringtones set for one another (I had Merle Haggard, he had Hank Williams Sr). I remember this moment as we walked where I was just filled with love for Paul. I called it the “shining beauty” moment because this love and light just came off of him.I knew I was in the presence of someone special.

I know that all the people in the Cf community that Paul touched, even those who never had the pleasure of looking into his eyes, felt that love and light on their ends of the computer screen. He touched us all so deeply.

Paul’s death has left a huge space in the CF community, but I know that we all take from him what he taught us with his kindness, his humor, and his knowledge. I feel Paul all around me and I will always hold him in my heart.

So whew. I did it. I went back and forth so much on what I wanted to say, but I knew Paul would want me to speak from the heart. I also mentally said a few words to him for making me have to get up in front of a hundred people I don’t know and do the “I have CF” spiel. I know he knew how hard that was!

They played the song “Regina” that I assume Paul wrote for Gina. I had not heard this before. I have not stopped listening to it since. Wow. Lots of tears for everyone at that moment.

After the service, one of Paul’s former students, Peter ,and his college friend Ted introduced themselves to me and we sort of became buddies. I followed Peter to Paul’s apartment where the after-thing was(what do you call the thing after a funeral?.

I thought I would “feel” Paul when I got into the apartment, but it was clear to me that the apartment had been cleaned out quite considerably. I knew there was no way Paul lived that sparsely! It just didn’t have his “presence.” His mom told us to feel free to take anything we wanted (mostly books) just, “not the ashes” she said (might have been tempting). I took a Flannery O’Connor book as well as a Thomas Merton one. The Merton had notes in it, and I wanted something with his writing in it.

As things started to relax, now that the hard part was over, people were less rigid, talked more. I joked with Paul’s brothers, met two of his former girlfriends, both of which I had heard of, talked to cousins and neighbors. I talked about CF to a lot of people. I think there was a bit of awkwardness, as what do you say to a CFer at a CFers funeral? I explained a lot about the “denial” thing, as so many people spoke about how they didn’t know Paul had CF for so long. CF denial was one of the first things Paul and I bonded about.

The most amazing moment was when Bill (think that was his name), one of the musicians Paul recorded with (think Strobe stuff) brought out his guitar, and we all sat and sang a few Beatles songs together. On my left was K, on my right, Paul’s dad, and then his brother, aunts and cousins across the way, and right then, that is when I felt Paul. That was the sending off I knew he would want. It was truly magical and I will be forever moved by it. I recorded a few seconds here, which I want to share. You can listen, be there - but no snarking at my off-key voice.

Paul’s’ brother added me back to his facebook (sorry for people who saw he was online, I think that was us, that must have been hard), which felt a little like cheating, but everyone who knew him wasn’t the least bit surprised that he had removed a few of us that he was close with. That was Paul.

I feel closer to him now than I did before, I think I fell in love all over when we all sang. I felt all I missed by having CF, by not being able to hang out with Paul at his house because of germs, by not meeting at the “right time.” Because I knew Paul and I talked about that “other life” we might have had. No, I wasn’t in love with him like that, but there is just no other way to explain it. The other life – that’s the one without CF, I guess.

Being there, seeing and talking to these people who I had heard of, who had heard of me, made it all real. It wasn’t just an online thing, this frienship was real and deep. I wish there were second chances, because I would do it differently if I could. I can’t, so I hold tight to the experience, to the honor of having known him, and being able to share with those he loved most in the celebration of his life.

I love you, Paul Justin. You never would tell me your middle name. But I know now.

Thursday, December 10, 2009

would you know my name?

Yesterday I had to run some errands. It was a bit arctic here and when I got out of my car, a blast of cold wind lifted my hair and burned my eyes, left me breathless. And I thought, "Ahh, there you are," then started crying as I walked into CVS.

The kindness of others never ceases to amaze me. I hope that I can reciprocate what people have given me in these last few days. I keep feeling gluttonous, taking all the sympathy and holding it close, as if I am the only one who lost someone.

The truth is, we're all hurting, and the losses keep on coming. Though I was the closest to Paul of all the people we have recently lost, I've ben touched by what each person's passing has meant - what it means to all of us.

There is something odd about being a "survivor." Especially a CF survivor, because the idea of survival is so transient. What does it even mean, in the face of this disease?

All these large life and death questions are swirling around in my head. I've asked a few people their thoughts and every time I am left feeling that that can't possibly be the answer. It all seems so simple.

When my sister died, I remember people talking about "heaven" and I thought they were crazy. There could not be such a place. What a childish idea. When Paul died, my first thought was, "I sure hope they were right."

I miss you. I can't wait to be in your space Saturday, to breathe you in....fill up these cystic lungs with your energy, breathe out all the love I have. All the love I have, Paul.

Monday, December 7, 2009

if you sing a song, sing a song for them

I don't get over things easily. I get kind of consumed by them. Today I barely could pull myself away from the computer. I just wanted to talk to other people who were feeling like I am, who understood. I have alwasy been a journaler, I have always tended to journal to deal with pain, hurt, confusion or anger. All of these I am feeling now. So I am writing, and rereading, and listening.

I went back through my old journals and found a few others that were written for Paul that I thought I would share.

This is another verion of "Hank and Merle" but a bit more detailed:

I got to meet my internet friend last night. It was really wonderful. I met him through and we've been "friends" for about two years now, though only in the last year have we really become closer. We joke that we are the other gender version of one another - if that made sense. He is 42 and about 9 months post transplant, but has had a very rough go of it. He is in rejection right now and is on a vast array of immunosuppressant drugs and antibiotics, so, since i culture staph and PA (sorry for the non CFers on the list, just know they are common bugs for people with Cf to have in their lungs), and since he is not doing so hot, we opted to keep the requisite three feet of space between us suggested for Cfers due to cross we didn't hug or even shake hands. None the less, it was amazing.

This was my first meeting of someone IRL with Cf where I felt I was relating to that person through and about this disease. It was fabulous. I wasn't embarrassed to cough, we talked enzymes and transplants and abuses we've put our bodies through in rebellion of this disease. I felt so connected.

There was no sexual tension at all, as can sometimes occur between members of the opposite sex, I felt like this was a pure friendship. We met at a coffee shop and then walked to try to find him something to eat since it wasn't the best idea to be in a car together (but sadly ended up at DQ as SB is not a late night town, especially on a Monday). As we walked back to his hotel I just had this moment of affection. I wanted to hug him so badly, and I would have thought germs-be-damned, but it wasn't my health we were protecting, so I resisted.

But we chatted in the parking lot and joked when I coughed. "That's OK, go ahead and have CF," he said.

To which I replied, "I have asthma," which is, of course, a Cf joke. And we talked about what excuse I would have made to an unknowing person had I coughed like that in front of them. But it was nealry midnight and I knew I had to go.

G wasn't overly amused with this whole idea in the first place, and I'd already been gone for three hours, so I knew I shouldn't stay. But I wanted to. It was such a unique moment of friendship, one that I have never had with another person because we were totally united with this disease. Besides the fact that we have a a lot in common anyway, the understaning of the disease made it so much deeper.

I don't think words can begin to explain.

This, it looks like, based on my "stat counter" might have been what Paul was (re)reading a few days before he died. While I am sad he was possibly revisitng any Pepe business, I am so glad that these words were fresh in his mind:

I've delayed writing a post for a few days because I am just not sure what I want to say. I've certainly allowed myself to get swept up into recent events, mainly in defense of my friend. and while I am utterly intrigued by the unfolding events - the HOW and WHY of the whole thing, the fascinating mental illness that most likely masterminded things, I am more concerned with love.

I find that people are so quick to judge. So quick to assume the worst - everyone loves a scandal. I am no different I suppose, as I dutifully maneuver through my daily blogroll, scoping out good sites and snooping into others' lives. Yet in doing this, in forming an internet identity and a life separate online form the one I live out here, outside of the box, I have created a life complete with friends, meaningful interactions, and even love.

We all know that love can't just be turned on and off. Haven't you ever seen"The Crying Game?" (spoiler here) - even when our protaganist finds out his love is in fact a man, he can't just stop loving her, by then it is much too late. Of course feelings can change and love can fade, but often not as we try to direct it to. It seems the harder people rally against the effects if love, the stronger it reacts.

So while I watch this great drama unfolding, puitting the piece together like a Scooby mystery, I keep thinking about love and how it affects those most directly involved, and because I keep reflecting on that feeling I can't help but feel extremely sad. Sad for a person who felt the need to create such a lie to find love and even sadder for my friend who loved so deeply that he put his own needs aside only to find out that the love has been misused and misdirected.

I hope my friend knows I send him much love in these hard days and that I have always believed in him, have seen his shining beauty, and in the words of one of my favorites, that I hope he shall "rise up singing."

I will have to revist my sadness ad nauseum, that is how I work things if you loved Paul, share here with me. I move through my emotions slowly, thoroughly. I know the music will come back to me a little at a time, but for now I am trying to be still with my grief, keep vigil for my friend.

Sunday, December 6, 2009

Wilhelm, are you listening now?

I really thought Paul would be in my dreams last night. I wanted to say goodbye. I was so unprepared for how hard I would take this. I guess I just never really thought it would happen. He kept telling me the end was near, but I wasn't listening.

I keep opening my chat boxes, hoping that some missed offline messages will pop up, anything, something. I didn't realize how much I depended on him being there. We talked probably 5 out of 7 days for the last two plus years, especially in the last year or so. Paul was always there. We would laugh about our relationship "in the box."

I self medicated last night and went to bed feeling Ok with things. But this morning that heavy skillet is back in my chest, a slight ache. I'll forget for a minute what has happened, then I will remember, with that dropping heart feeling, that Paul is gone.

I haven't grieved for a person since my sister died in 2001, not truly grieved. I forgot what an emotional roller coaster grieving is...laughing, crying, feeling calm, feeling angry.

My family is being OK. My husband, very much aware of how much time Paul and I spent together online has been supportive and I appreciate him not down playing my grief. He doesn't understand CF too much, but this he seems to understand. My mother was a different story. I don't think she can understand how a mostly online frinedship can lead to these sorts of feelings. She doesn't understand why I want to go to his services in Chicago. I felt more alone than ever when she made a few of the comments she did after I asked if she'd help with the kids when I found out when the services would be. The first person I would have talked to about that would have been Paul.

His name pops in on my chatbox and I keep wanting to type in, "you there?" but of course, he isn't.

I know Paul left this world in his own terms, the way he wanted to go. I admire that. I admire how brave he was in death. I want to be as brave in life as I honor and remember my friend, but these little selfish parts of me keeping popping in...feeling sorry for myself, forgetting how many others are grieving along with me. Parts I know Paul would have told me to recognize and let go of.

I know I am no where finished in this process. I may never be, as I don't let people in and out of my heart easily. But the place Paul held in my heart is huge. It isn't empty. I know he is still there, I just have to learn to hold him differently now.

Saturday, December 5, 2009

I will not forget you

I know I am not the only one with a heavy heart today. Not the only one touched by a very special person, and probably not the only one turning to her online friends for solace and support.

I don't know how much I am ready to shift through my feelings yet, it is all too real and shocking for me. So instead, I wanted to repost an old blog, from early July 2008. Paul was driving back from Pitt and he stopped through and we spent a few hours hanging out. It was wonderful. I originally blogged this at, but I am so glad I thought to back it up so I can share it again now. Words are all I have left...but how appropritae for our Paul Q.

Hank AND Merle

It's too bad I forgot my camera, because for me, Monday night was worthy of recording. Why you ask? Well because I got to spend a few hours with my favorite CFer, Paul Q.

Although my uncle has CF, and I also had a little playmate when I was a child, I really haven't spent any time IRL with another CFer. For my uncle, it was always sort of the elephant in the room: no one taked about it much in our family. As for my playmate, well we were young and I think my mom tried to limit our interaction because she was sick and my mother didn't want that to scare me (and we wonder why denial?). My uncle is 11 years post tx and I think might feel he has left Cf behind, my playmate has since passed away. So besides late night chat with you all (each in our own separate box) and occasional glimpses of others at clinic, my CF interaction has been limited. No CF camp for this old dog.

Usually, meeting someone for the first time is a bit anxiety inducing, for me at least. and I prepared Paul Q for my possible muteness, as I can be rather shy sometimes. But it only took a few minutes for my shyness to melt away, partly, I realized, because I had nothing to hide. I wasn't worried at all about coughing - I mean, he knew why I would be coughing and though I didn't eat, I certainly didn't have worried about being stealth with the enzymes. I really have not ever felt so free with CF, not ever. Because although I cough a plenty around my family and don't hide enzyme taking, this was still unique and was....wonderful.

I have wrestled with how I feel about CF for the past year, as I have increased treatments and tried to come to an understanding of what it means for me, blogging much of it here, as a record for myself and an outlet where I know others can understand. I tried "coming out" in class last semester, but that wasn't quite the moment of release I thought it would be. I still cringed each time I said CF. And mainly, it's because people just don't get it. How can they? They try and they mean well. But I just don't feel they can truly know. Even my own husband, who valiantly set me off to meet a "man from the internet," but sat home worrying the entire time, couldn't understand what I was saying when I tried to explain why hanging out with Paul Q was different.

I think that meeting Q exemplified what coming to this site has meant to me. The importance of the connections with regards to having this disease, the frienships forged here. I am grateful to all of you for what you bring to the table as we flounder about trying to catch our breaths.

And thanks Paul, for taking the time to spend a few hours with this old country gal. Here is the hug that I didn't get to give ya (((((((((((((((((((((((((((((((((((((((((((((HUG))))))))))))))))))))))))))))))))))))

Monday, November 23, 2009

I know you rider gonna miss me when I'm gone

So, this is the never ending story. Well, maybe not quite. Ever been to a Dead show? It is more like that. Only instead of Scarlet Fire>New Speedway Boogie>I Know You Rider (no, I doubt the Dead really played that set, but whatever) I get:

H1N1>oral levaquin+prednisone>IV levaqin+zosyn>major joint pain>sinus infection>oral cipro>more joint pain and sinus pain>acinetobacter>doxycycline.

Killer set list, dude.

My last cultures showed a possibility of acinetobacter, which, from my science homework, is not really great news. So I am now on doxycycline until my TOBI arrives (switched form colisitn) probably after Thanksgiving. ~le sigh

goodbye hurting-me-fluoroquinolone-cipro. hello laryngitis-TOBI.

More mundane and exciting news is that it is coming upon the Wednesday before Thanksgiving, which is quite honestly, my favorite holiday. Not Thanksgiving - the Wednesday before Thanksgiving. I hope the doxy doesn't screw up my groove for that night. I waxed my eyebrows and everything!

Thursday, November 19, 2009

beautiful people, you share the same backdoor that I do

I think my hormones are funky, because it sure does seem like I cry a lot these days.

But I was looking over my livejournal friends list and my FB friends list and I was realizing that the cystics are taking over.

Sometimes I am amazed at how far I have come in the last 5 years with this disease and I owe so much of it to all the CFers I have met over the years. I love you guys so much, I don't know if I often express how much the CF community means to me. Seems it is so easy to get wrapped up in my own business.

I laugh sometimes when I go to the CF website I frequent (CF2chat, yo) and here are all these beautiful people and we're talking about the color of our sputum and consistency of our crap, and it is lovely. I love it. Who else on earth can really understand this. Who else would even care?

I love that we are such a close and supportive community. I am so pleased to be part of it. I have never been the joining sort. I didn't really do clubs in high school (aside from the swim team, but that was kind of forced on me - all for the best of course), no sorority for me in college. I tend to hang back, be an observer. Even within the CF community, I think I hold back a bit, tend to wallflower myself sometimes. Yet I could not be happier or PROUDER to say I am a part of this group.

But along with this membership comes the heartache. I hurt for you when I read your blogs and know you're not doing well. So many of us are sick right now, so many are really, really sick. It's so damn unfair that the most wonderful people I have met have to be sick, hurting, unable to breathe. It pisses me off.

I have heard it said more than once, in more than one place, that cystics seem to be really attractive. God's funny joke, eh? Hey, here are these crappy lungs and messed up insides, but I will give you a great face to go with it. We're elfin, faeries. But I know the truth: this beauty is completely represenative of the person inside. Imperfect as the insides may be, I think your hearts and spirits are strong and sparkely and vibrant. Even better than the outsides.

So, my beautiful friends, I send my heart out to you all. I love you!

and I love the non-cystics who read this page as well. The fact that you come here and you care makes you every bit as beautiful to me. thank you.

Monday, November 16, 2009

take me to your leader

So. So. Um....

Clinic was last Friday. They did not have my bone density results (of course) and I had a massive fail on getting lab work done before, so not the most productive visit. I did feel very cared about though, something I have complained about with them before. They were quite concerned that I am not back to my old self post miss piggy. My doc ran something by me about viral myopathy which my google-fu fails me in finding good answers to that. I did get my labwork (blood, includng all vitamin levels and cholesterol (have not had that checked in YEARS)) and sputum done friday. had my bone density sent to them again and my last xray results as well, so if anyting is amiss, hopefully we will find it.

I am down to 118. I was 136.9 in March, so this is good, though of course everyone freaks out that I have been losing weight for 6 months. I am TRYING to people, even CFers can get big and can be vain. Anyway, I am Ok with 118, though I would not be sad if another 5 lbs or so slipped off - though I gotta say, I was glad I had some to spare during the big INFLUENZA debacle.

My PFTs were at 71, which is actually down from 74 and is also a week post IVS, which tells ME that something is still off, that or, as I suspected, H1N1 ate part of my lungs when it visited.

Last night when I nebbed and vested I had my first post IV welcome back mucoid PA moment, and today I swear fo' gawd I can feel it. I am tired and achey and just off. boo.

But I thik my 'tude is fixed, mostly. I am not in quite such a hole as I was, so that is good. I just want to "fix" whatever is wrong. I guess that prolly won't happen, not unless little green guys kidnap me and take me to their planet...or wait...I think I just spit a few of those guys out earlier. yum.

Wednesday, November 11, 2009

take these broken wings

My hives are much much better thanks to zantac. Who would have known an acid reflux med is also an antihistamine (it is an H2 blocker, as opposed to benadryl which is an H1 blocker, I have been edjumacated). So combined with the benadryl, I have been OK today. I still look lkinda red and funky but nothing is raised or itching too much today.

More importantly, I am posting about one of my LJ friends, Eva. Eva is 2 years post tx and is now in chronic rejection. I think she is down into the teens for her lung function. Tonight she is going into the hospital because she is having too much trouble breathing. I am praying for her tonight.

i think her Lj journal is public if you're not familair with her. She was also in the documentary "65_redroses" which will be seen on Canadian TV on November 16th.

I've been feeling really defeated by CF lately, physically and emotionally, personally and extrinsically. I just want to fix us all.

Tuesday, November 10, 2009

itchy and scratchy

Hives, day 3

Yeah. I am not suppossed to complain. right? I am now taking zantac, which is an H2 blocker and benadryl which is an H1 blocker. So far, not stellar results.
No more penicillians for me. I can't imagine this getting better with consecutive tries. And from what I read, desensitation might not work with delayed allergic reactions....which means, perhaps, I am screwed. c'est la vie custique. (vie de merde, no?)

my hands are swollen like little red balloons, my neck looks like I have ringworm, and my face looks like that guy on "Something About Mary" you know which one I mean, right?

PLease go away, hives.

Sunday, November 8, 2009

sitting here in limbo, like a bird without a song

So, you know, when it rains, it pours.

I have hives, I assume from the zosyn - I also got hives from augmetnin and ceftazadime(dine?), so I assume this is a penicillian thing.

Also, I am low on creon, In fact my purse stash ran out and last night we were at a birthday party when I realized I didn't have any and there were none in my husband's truck. So I made the stupid decision to go ahead and eat a hamburger without. I hardly ever eat without enzymes. Today I remember why.

I have only 8 creaon left at home. So I called in a refill.

Upon pick-up, the pharamcy told me my creon rx was declined due to price by my insurance. They have declined it before, often saying I am getting "too many." Usually I and lightly bitch and they fix it. I always assumed it was because I was trying to refill before my 30 days wre up, as is sometimes the case.

Anyway, when I called, the gal on the phone said it had to go to administrative review and would take 24-48 business hours to be resolved.

Dear readers, I have never "cussed out" a person in my life. In fact, I am very kind to the poor fools who answer phones at these kind of places because I know they are just little inefficent cogs in what is usually a square wheel. But I just came unglued. I was in the car at the Walgreens parking lot scratching my hives, woth a stomach ache and now crying and I think I said something to the effect that I had to have my medcine immediately. I could not fucking wait 48 hours and that by doing so they were inadvertantly trying to kill me and could expect to have a huge lawsuit on their hands, etc. I am kind of embarrassecd now.

But the woman on the othe end was kind and she kept her cool and apologized (and so did I) and she explained that since my rx was over $1500 it required an adminstrative override. I have only been taking this many creon for about a year now and I guess on business days sometimes Walgreens handles this for me, which is why this denial was happening sometimes and not others. I ended up getting a 24 hour supply from Walgreens. Nice or not, that rx company can bite my hived up ass.

So world, while I did walk about a mile yesterday and today and the weather has been superb, my nerves are a bit on edge and my tears are flowing easily. There is no where to go but up.

Tuesday, November 3, 2009

it's easy

My lungs are finally running pretty clear streams whilst vesting, sweet. I have a cold and my one ear feels like I might have gone deaf in it, but my mood is OK.

I think that I really need to be grateful for where I am - I am home, I am relatvely healthy. H1N1 is eating the CF community up, so I really need to appreciate where I am and what I have. I keep fearing that this illness will have been the turning point in my health, but I guess, if it is, it is. I can't be too picky when it could have been so much worse...people are vented and dying from this horrid thing, Cfers and nonmutated folk alike, and I made it out, not unscathed, but OK. I have to send out prayers to everyone who is battling this thing (hell, prayers for everyone all around).

The home nurse is coming today to do a dressing change on my PICC. She sounded like a twit on the phone, and you know how I feel about pedantic twit nurses. I know there are come Cfers out there who are nurses...I know there are good nurses. This might be an excellent nurse with bad phone manners. I think Cfers need to try to rule the world, honestly. Then, everywhere we go, people will "get it" and not be so effing annoying.

ah, but I must keep love in my heart.

Twice in the last week I have seen my husband extract locked-in keys from our cars. Small things like that are so sexy. He is back on my good side (for now) having been trying to care for me. Love. Love is all you need.

Sunday, November 1, 2009

temptation eyes

My husband allowed me to loll around in bed until 4 o'clock. Seriously. I read, dozed, watched "17 Again" (cried in that movie, why? Because being sick and laying in bed is nice, but a bit depressing). Today I was legitimately lazy.

I am still exahusted though, having been up at 3 and 4 for unrelated items and then at 5 and 6 for meds and again 7:30 to flush lines at 8:30 when all the kids got up...and no sleep 'til (Brooklyn) midnight again tonight. Friday can't come quick enough. I've eaten so much Halloween candy my gums and tongue are raw, but i had this epiphany today. Time to get off my ass and start getting active again. I've been sick for a month, but it is time to move on. I think my attitude will make a big difference in things, so....hopefully I sleep well tonight and can be bright eyed and bushy tailed for tomorrow.

even make-up isn't helping with the old hag look

sick eyes

Friday, October 30, 2009

baby, roll with the punches - even if the end is not in sight

The good:

My husband got up and did my 5 am infusion for me. He says he will do it the rest of the time. This means I have to get up just once, at 6 to disconnect and infuse the second med and then can doze until my alarm at 7. What a difference not getting up made - I still woke up when he did it, but I didn't have to move an inch. It made me feel loved.

The bad:

I am still a little SOB and my energy level is pretty low and so I feel I am getting behind, especially with my school work. This is my last class before I write my master's thesis, so I really want to be done and have it go easily. I am feelinga bit stressed.

The ugly:

I seem to have caught a cold/virus on top of everything else. My throat is on fire, very very red. Pretty doubtful it is bacterial with the meds I am on sucking every inch of bacteria out of my system (just ask my colon), so it must be viral. Please body, fight back!

So, still on a teeter totter here, but I keep hopeful. There must be an end in sight? right? please!

Thursday, October 29, 2009

I thought it was a bird but it was just a paper bag

I want to try to be postive and uncomplaining as I write this post. But the thing is I am exhausted and I have some seriously upset bowels, and I can't sleep (med induced insomnia??) and I have been ignoring my kids and I am tired and I don't see how this is suppossed to make me get better, my throat hurts, I am coughing up a ton, look like a greasy spoon, and the little one has a fever (her turn with H1N1?) to make lemonade out of that pile of rotten citrus fruit?

5 good things for today:

1) Only 7 more days to go
2) we've financially caught up from my husband's weel long non-paid H1N1 work vacation
3) some solicitor today told me that I didn't look old enough to be the home owner and the guy with the infusion pharmacy said I looked too little to weigh what i do (which I guess was a compliment)
4) special hot cocoa!
5) October is almost over, November can't be any worse, can it?

OK, number 5 was cheating, but serioulsy I am so ready to move on from this month - as if the changing of the month will change anything, but it is symbolic, yes?

Since I have been sick I have been pretty holed up inside and so I have spent far too much time on the internets. But today I was watching some of the vidoes at, and I was really struck by this shared experience we all have. Just listening to people's voices, watching them just kind of hit me (as things do from time to time) how important my CF community has become to for that, I add my 6th gratitude of the all. Much love, all of you.

Wednesday, October 28, 2009

go back jack and do it again

edited 10-28-09 - 9:22pm whilst awaiting infusion

I have the time to address some of the topics that came up from the hubsand post.

But first, I shall toot my own horn. This morning I: infused two meds, vested, nebulized, fed aand changed a baby, dressed a toddler in a fairy costume (and got her to brush her hair), went to the grocery store with both children, put awat groceries and started laundry. woot.

No one better call me lazy. I do think I feel better though. I am still a bit SOB, but my energy (minus my lack of sleep, which will hit soon, I'm sure) seems a bit higher. Maybe it is mental, maybe it is just the need to get things accomplished, maybe it is the abx...who knows.

On to matrimony:

I showed my husband all the comments yesterday(I think there are like 17 of them! so cool!) and asked him to read them. His gracious reply was, "I don't feel like getting on the computer right now." humph. Seriously though, your comments brought a few issues to light for me.

1)The lack of interest, whether it be from fear or ignorance or what have you, makes me feel unloved and unimportant. I can't seem to get him to get that, but I need to recognize it and I need him to recognize it too.

2) Compassion and understanding are not the same. I have long thought my husband lacked compassion. Chalk it up to his upbringing. That is not the same as not understainding. I can expect him to educate himself and to try to understand the dymanics of CF, but I can't expect him to truly be able to put himself on my shoes. Right now he is failing at both a bit, but we can work on the one, the other not so much.

3) My husband takes care of me in a physical sense. He got up at 5 to help with my first infusion, he changes the oil in my car, he does laundry if I ask, takes care of the house (outside and mr-fix-it stuff, mainly)....emotionally, he is not as strong. He doesn't know what to do when I cry, doesn't know how to handle when I try to explain my expectations for him emotionally, and honestly, has no idea how to handle the emotional (or physical) demands of CF.

4) My husband DOES think I complain a lot. But the thing is, he and I have different definitions of complaining. I think complaining is sending your soup back because it doesn't have enough cheese on it, or whining about weather and things you have no control over. I don't think complaining is saying, "I have so much to do tomorrow, I have to do a and b and c and by d and f for ghij and k." So that ne we might be at a standstill...

5) It is Ok to be tired and to take time for myself to do what I need to do with CF. With or without a husband, I will have CF, and for that my health has to be first. I want to be here for my kids and my husband and family, and I can only do that by taking care of me, even if I have to do it alone.

6) Another comment came in today while I was having my PICC fixed (see below) with reagrds to my husband's diabetes. I do take the time to inform myself on diabetes, to a point. I read a book about it when we first met and he started insulin (he is type 1 but was misdiagnosed as type II in the Navy). I share any new info I learn about it (though it usually comes from CFRDers, still, diabetes, diabetes), I make his lab appointments and doc appointments - so yeah, I am involved. I have not joined a diabetes support group or website or anything like we cystics have, but I know more about diabetes than I think he knows about CF. Part of this is just because we are not created the same. I was brought up reading and asking questions, he was not. I have to learn eveyrthing I can about a new thing, while he is content with just knowing what he needs to know or what "authorites" tell him. I don't think one way is necesarily better than the other and certainly I waited years to allow myself to learn details about CF, my own disease! but it is a different way of coping, and as with the aforementioned physical/emotional divide, this is another way we are soooo different.

BAH. I have to go back to infusion. something is wrong with this PICC. I can ~feel~ it in my body, if that sounds wierd, I know, but there is pressure in my chest and my heart keeps beating really hard. so much for easy.

PICC fixed. I hope.

Tuesday, October 27, 2009

tying off the dinosaur

So, a PICC in my left arm, as handy as it would be, is a fail. 4 attempts before I folded:


Right arm a go, on the first try:


Post PICC calm:


Left arm, eight hours later:


Apparently I am very senstive to PICCs and have unfriendly veins. Super.

and, zosyn is every 4 (*see below) hours. lovely. Dare I say, besides my aching arms that I think I feel better today?

oops, I lied. After rereading a comment, I realized my typo. The zosyn is every 6 hours. not 4. Just a PICCed brain speaking, I guess

rock me amadeus

Thanks for the replies to the below post, please, keep them coming, there have been some really terrific ideas brought to my attention that I had not thought of. I want to address this more soon. However, there are 2 minutes of vest time and then I am out the door to get PICCed - baH humbug. But it needs to be done. buh bye H1N1 residual bullshit, c-ya later.

Sunday, October 25, 2009

I can't get no satisfaction

Dearest readers,

Now is my turn for Q and A. As many of you know, I struggle with my husband understanding CF - and trying to get him involved. He won't go to websites, he doesn't read this blog. So I ask you now, please, post an answer to my question. I might copy and paste some of the answers into an email to my husband, so you don't have to write directly to me, but rather just pontificate on the subject :) (pontificate is a good word, no?)

So, what is the one main thing you would want or expect someone who loves you to know or understand about CF...what do you think or wish people would "get" about this disease. If you read and don't have Cf, maybe what is the one thing you wish you could know or understand about CF?

Honestly friends, I am at my wits end with feeling that I get no compassion around here, so your answers might be able to shed light in ways that I can't.

Friday, October 23, 2009

we pray and we pray and we pray every day

well, the prednisone has hit. sometimes this stuff makes me kind of maniacal. I want to talk talk talk and eat eat eat. I keep thinking it is all in my head and that there is no way I could feel it so quickly, but I do. I have lost almost 20lbs since June and I think I just ate like 12 pieces of pizza, I'll probably gain it all back in the next week. boo to that. Anyway, my xray was "normal" so I am on the pred and hopefully that will solve my issues. I actually recorded myself breathing after I walked up the basement stairs today, but I can't get it to post, sounds like darth vadar.

Anyway, I said I would post my Q and A thing today. Only one persn had a pregunta, which made me feel a bit audacious to have even proposed such a thing, but Q and A:

What percentage of each do you feel:

1. scared of the future, versus
2. grateful for what you have, versus
3. excited when you wake up in the mornings?

Is it 10%, 60%, 30%, or ......?

So, I tend to lay in bed at night and worry about the future - I worry about my kids (in general) I worry about not seeing them (as in early Cf death), I worry about my husband and my marriage - I worry a lot at night. Seeing this is mostly a nightly occurance, I'd day it probably equals about 5% of my weekly time.

I try to be grateful for what I have and give thanks just as much as I worry. I tend to say little prayers throughout the day, like, "please let my son have a good day and school" or "thank you for bringing my husband home safe," that kind of thing.
so again, I'd say maybe that equals, really, like another 5% of my time

I am rarely excited in the morning. I am not a real peppy positive kind of person, so unless I have something really special going on, excited is not how I start out my day. So that would be like 0.01% of the time.

When I stop to think about it, I guess most of my waking time is spent being busy, taking care of house and kids and school, so I thankfully don't have too much time to ruminate on my fears, but in the same token, not enough time is spent giving thanks for what I do have, either.

doctor docgtor gimme the news I got a bad case of lovin' you

So I got into the Fort Wayne clinic, but not until December. They could get me in earlier, but their clinic is one Wednesdays, and I am babysitting for an infant Monday, Wed, and Thurs, so that kinda botches things up. I figured if I tell her mom now about December that gives her plenty of time to find someone else that day.

The coordinator told me they only currently follow 12 adults in the clinic. This is both good and bad as far as I am concerned. Good in that there is not an overwhelming amount of people clamoring to be seen, but bad in that they only have clinic once a month and the doc is a hostpital internist (or something like that) and so he is accessible, but not always because he if often on call at the hospital. We discussed that 90% of the time I know what I need and won't require being seen, besides routine visits, but just as well, if I am sick and NEED to be seen, will that happen? It sounds like yes, they make amends for that. I am not going to burn my bridges here in town, so I set my appointment for now as simply a second opinion.

Meanwhile, on the H1N1 front. I saw a new GP. I am really pissed with my clinic right now, though I know inevitabley I will need to see them. I just wanted someone to listen to my chest, check my sats, that kind of thing. The GP thought all sounded clear and my sats were 97, so while I don't know what my PFTS are (I suspect they have fallen considerably, to be honest, things sounded OK. I got a chest xray also. I suggested prednisone and the GP agreed, though she wanted to wait and see what the xray showed (which I'm sure will show what it always does, mild restriction, most damamge to upper lobes) I figure if the GP doesn't get the report today I can call the clinic and they will surely rx me the steroids. I feel inflammed, if one can feel such a thing.

But being SOB is a really new thing for me, I mean last night I had to stop at the library between flights of stairs to catch my breath and I sound like a freakin locomotive coming, huffing and puffing, so all is not well. I think IVS are inevitable - something I already knew, was even ready to do...but don't want to.

so c'est la vie cystique.

Monday, October 19, 2009

wouldn't it be a real drag if we were all the same

I called today to the Fort Wayne Cf clinic and left a message. The coordinator for adult care was out, be back manana. I felt excited when the answering message said, "If you need to speak to Dr. J, call her at 2345678." This is exactly what I want: an accessible doctor. Something is wrong with my lungs. I am not congested, not anymore than usual CF, but I am short of breath and I am coughing a ton - I would almost venture to say bronchitis or maybe just serious inflammation. I know H1N1 is a respiratory flu, and my husband is still hacking away horribley (in fact, this morning and the other night both I was thinking in my head, "I wish he'd shut up" when he kept coughing - made me feel bad for him, living with me!) So maybe it is just taking forever to get over. I dunno. I am on levaquin, so I hope that is holding off any other major infection from setting in...but my point is, I should have been able to be seen by my doc, not told by the NP, "well, we can do an xray, but it won't make any difference how we treat you." Well, fine. I don't want an x-ray anyway, but this is not just a Cf exacerbation, this is repiratory influenza and maybe I need something different than usual Cf crap? I don't know, I AM NOT THE DOCTOR (but should have listened ot my dad and become one, sheesh), and i don't want to have to play doc to myself all the time; sometimes I want someone to care enough about me and my health to at least want me to come in and be seen. Unrealistic??

So some people are posting a little Q and A on their blogs, which I thought might be fun to do, as who doesn't like to wax poetic in their personal internet space? So I leave the Q and A open to questions, which I will answer. Ask me anything, not much is too personal for me to give some answer to. I will respond on Friday, Oct. 23rd to any inquiries (this reminds me of my dad, who loves to talk, telling my brother's friends, "Now is the time you can ask me anything you wan tto know about," and me thinking: please God, don't ask him anything, I am so tired of hearing him talk!)

Thursday, October 15, 2009

I called the witch doctor he told me what to do

I have to say that all this H1N1 buuullshit is making me quite nostalgic for my good health. I guess we all need that kick in the ass reminder every now and then not to take things like health for granted. I got a little paranoid this morning, morning 6 with a fever over 100, about not making it through the great flu epidemic of 2009. How long can a body have a fever before all the organs cook up? Alas, here I am vesting and nebbing and typing, sans advil or hydrocodone (how I love thee), and while my head feels slightly cracked by a ginsu knife and I have to turn my entire body to look right or left lest my eyeballs send searing pain into my dome, I am in decent spirits.

Onto Piper's blogger challenge.

1) What are your thoughts on "alternative" forms of medicine?

2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?

3) What does "healing" mean to you in the context of cystic fibrosis.

4) Anything else you want to say on this topic.

1) I believe in alternative medicine to a point. There is a lot of wisdom in using nature to heal - I believe in a healthy diet, I believe (and have used) acupuncture, I believe in exercize, I believe in aromatherapy and essential oils (sorta, there is some proof that oils absorb into the skin and help, but I'm not using oils instead of meds anytime soon)- I don't believe in crystals or random chinese herb concoctions sold on the street corner or reiki. My dad was always a big proponent of diet and exercize and herbs - but not at the sake of modern medicine, in conjunction with. And while I know that diet and exercize aren't really "alternative" it is surprizing how many people don't look to those FIRST when trying to heal. I don't think we should blindly believe in any one mode of treatment. I think people should constantly question, search, try new things, but we don't need to reinvent the wheel either.

2) Exercize was alwasy my saving grace with Cf and I will spout off about it until the cows come home. My parents putting me in competitive swimming as a kid was the best thing they ever could have done for me. I did no other treatmetns as a kid, aside from enzymes. I don't exercize now like I should, partly due to my own laziness, partly due just trying to find the time. I have used herbs in conjunction with my Cf, but never saw any great improvement. Right now, I am all Western meds.

3) For me, healing with CF means not getting any sicker. It means rebounding from illness. Not feeling pain, not being uncomfortable, emotionally or physically, with the disease.

If you have your own blog, answer one or some or all of these questions there, and then post here to let everyone know to check it out. Or else just answer the questions in the comment field.

Wednesday, October 14, 2009

makin' bacon

We have H1N1. Fo' shizzle. I have been soooo sick for 5 days now, serious misery. I went to medpoint Monday and their quick culture came back negative for both strains of flu. My husband went to his family doctor and had the same result. But today his doc called back and said yep, you grew out H1N1. Lovely. So I assume my culture is the same, though Medpoint has not called. My son already has been sick and done with this - he is the one who brought it home and so far, the baby has not had anything (knock on wood). I have not had the flu since I was 14, so this has knocked me on my patootie. I am living on advil. I am behind on my class work. bah humbug. Hurts my eyes to mve too much, I feel like I am telling people I have the bubonic plague.

Wednesday, September 30, 2009

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!

Thursday, August 20, 2009

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!

Friday, August 7, 2009

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....

Thursday, August 6, 2009

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.


Monday, August 3, 2009

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 ------->

Friday, July 31, 2009

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.

Friday, July 24, 2009

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.

Tuesday, July 14, 2009

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 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.

Thursday, July 2, 2009

the ants go marching one by one hurrah hurrah


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.

Thursday, June 11, 2009

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.

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.

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.

Wednesday, May 20, 2009

sleep with one eye open

1) We had to put our dog to sleep today. She had cancer. It was actually my husband's dog from before me, and to be honest, I didn't like her all that well - but it was still sad. RIP, Payton.

2) I know I am not the only person who sometimes HATES vesting and nebs - holla if you hear me!

3) Tomorrow is my boy's last day of school - which will make me the mother of a FOURTH GRADER. How did this happpen. Praise Jah, I am still here to see it.

4) It also means I am going to get to start sleeping in

5) Nasocort makes everything smell like vomit, but my ENT said my sinuses look great. Took long enough, shoooot.

6) It's depressing when these rejections come in from these journals.

7) Have you seen that commercial for Burger KIng that is all "I like square butts and I cannot lie?" HORRID SHIT ON THE TELLY

8) Exercize? What's that?

9) What is the sound of one hand clapping?

10) Do you own one of those P.O.W./M.I.A. shirts?

Thursday, May 14, 2009

if I didn't have these veins poppin' out all over my legs

Clinic today. Uneventful. PFTS hold steady at 72 (34 for 25/75). Weight is up. bah. And when I asked the dietician about losing, she laughed. Why can't people see that Cf or not, I am still a human with human worries and emotions. As of yet I still have a life that doesn't fully encompass CF or rather that is not fully encompassed by CF, so if I'm still a bit vain, I'll hold onto that because it means I am still winning. As smart as it may be to be glad I'm lugging around and extra 35lbs in case I get sick, I'm NOT glad and I don't like anticipating illness in this way: might as well hold onto it cuz I know I'm gonna need it. Yes, I'm sure this is true, at some point, but it isn't now and I want my goddman flat stomach back.

Anyway, besides that, nothing.

I've been lax, a lax blogger, lax blog reader. I'm sorry. I do love you all, especially the people who actually come here and read my drivel.

I've been writing poems lately to tell the truth. I probably won't post them, though one is being published in an online journal, so when it comes out, I'll link. It's keeping me busier and more fulfilled than writing about myself and dumb Cf right now, but I'll be back. It all cycles through.

Friday, May 8, 2009

everybody rolls with their fingers crossed

I ate a hotdog, potato chips and a half a cookie today without enzymes. Lordamighty.

It was my kid's filed day, so all the paretns had a picnic with the kids. The babe and I rode our bike there which was my measly exercize for the day. I have been suhc a slacker in that department.

My son's first baseball game tomorrow and he is a pitcher! Make momma nervous. I get more worked up than he does, I'm sure, but that's my boy out there!

My Cf clinic is actually make a change (cue the drums). They are now having peds and adult clinics on two different days. This is great news. No crowded waiting room, no snotty kids. I go next Thursday. This has been the first quarter I have not been in between 3 month visitis in quite a while. Seems a lifetime ago that I only went once a year. I don't even remember that girl.

AND, by some unknown fluke of my wierd ass insurance, it ~looks~ lilke tehy might be covering my sinus surgery 100% Why? Dunno. What loophole this falls under, dunno that eihter, but praise Jah, I think it might be true.

Monday, May 4, 2009

I don't wanna be a player no more

I've been a piss poor poster I'm afraid and I don't have much to say today either.

I'm finally feeling better. My last night of class is tomorrow so no more computer time dedicated to school work (so more time for what? los internetes?) and summer is coming (slowly).

So, I've been a bit MIA. I've been sewing and crocheting again - I go in spurts, I made a few dresses for the baby, a shirt for myself, sand I am crocheting flower brooches (sp) for the mothers on mother's day.

My digital camera broke during Christmas. I think it broke when, after an ice storm and a night of drinking, my husband and I took a spill on the ice - but i can't be sure, though no one admits to dropping it (unles I did it??)so I can't take pictures of any of my creations. Just as well.

Clinic next week. Hope all has maintained. I'm getting my second round of Colistin this week, so hopefully it will work as well as it seemed to in March and I'll see some results on PFTs. Holding steady would be fine with me though - no, to hell with that, after all the pain I went through with sinus surgery, I'd like to see an increase, thankyouverymuch.

If you've read this entire post without yawning, blow yourslef a kiss!

Monday, April 13, 2009

I am a vampire I am a vampire I have lost my fangs

This post probably won't go anywhere as I don't have a whole lot of interest to actually say.

My sinus are (sort of) getting better, but what I think it boils down to is that I need an antibiotic. My doc hasn't agreed with me yet, but I am working on him. I could bypass him and get one from my stepmom instead, but I like him so I want to work with him and not alienate his judgement. But, I go back thursday and I'm pretty sure I am gonna at leasttalk him into some cipro. The pain is just a plain old sinus headache now though, not the horrid pain I was feeling before, so I guess that's good.

I'm embarrassed to say I've been busy reading lately and not hanging out online so much. Reading you say, why, what a great past time (pass time?)! but the thing is, I have been reading the Twilight series (ducks head in embarrassment). I think what I need in my life is simply a teenaged vampire to spice things right up. Sigh. Maybe I just need to be 17 again, first love...


I have not swam in over a month now. I think I will go back to it tomorrow, but my motivation is nil. I ran a mile (don't be fooled, I ran/walked) last week, but that was my first exercize foray since surgery. I HAVE to get back into the swing of things, I was doing so well with my regime. I didn't lose a pound, but I felt good. I've been trying to count calories and stuff to drop a few (my grandma even commented on me gaining weight. bah), but being a CFer I have NEVER watched what I ate and so it is really hard to be disciplined about NOT eating. I even bought some hoodia. (that's embarrassing to admit too!)

I'm ready for summer.

Friday, April 3, 2009

ogres have layers

ENT again yesterday. He said he has never had a patient have so much pain. So glad I get to be the one. But he said the left sife of my head looks great, nice and clear - but the right side...well, he could not even see in there until he pulled out a HUGE mucous plug and then he sucked a whole bunch more icky hard green crap put. He really thinks my pain is related simply to congested sinuses and his theory ia that I have a thin crusty layer of mucous over the tissue that is keeping it from healing properly from the surgery and that continued suction and washing should help. I'm not that optimistic though and I pushed that I can call Monday if I have no improvement and get another scan. That being said, I tentatively want to say I actually do feel a little better today. KNOCK ON WOOD PUHLEAZ.

I am sooooo effing tired of this.

I've decided to change my attitude though. I need to really believe there is an end to this as my whole mental framework has been poor lately. While I fully understand how chronic pain can suck you down, I also think I have been able to watch myself in a sort of removed way and I can see how my own attitude has been part of the problem as well, so I am really trying to stay happy and not let this get me down.

I also need to wean off the narcotics. I don't think they have helped the situation either. I mean, they help the pain, but not my lethargy and bad attitude.

So. off to do something fun and enlightning today.

Fare thee well, ogre.

(sorry, we're watching Shrek for the 10000th time)

Friday, March 27, 2009

Brain Stew

I had the spacer/implants and splint removed from my nose yesterday. I thought the splint was removed last week, but it was actually the gel packs that were removed. The splint removal was a bit uncomfortable, but tolerable. There was a definite sense of relief when it was gone. I had had one of the stitches holding it place come out and so some of it was pushed far up into the left side of my nose making me sneeze A TON and so I was so glad to get that out.


I mean, he was digging around in the left side (the right side is the one that has been giving me all this pain) and then from behind my left eye comes this searing tour-de-force of pressure nad ripping pain. I actually moaned.

I'm not a wimp, people. I have had a 100% natural child brith, I have 10 (depending on how you count them) tattoos, I pierced my own ear when I was in 6th grade for goodness sake, I can take pain.


OMFG. He could not get to the implant, so he is poking and prodding and renumbing it over and over and he keeps ripping out stuff that feels awfully similar to the left side extraction, but it isn't, it is just hard crusty bloody boogary stuff. So he would take a break, renumb and try again. Suddenly, I felt this ripping pain and pressure akin to my eyeball being ripped from the inside out my a gigantic crab claw and my brains follwoing being squeezed through my eye hole. I screamed, literally, screamed aloud and then all this blood just started gushing out of my head. It was like a bullet hole or something and my guts were pouring out of my head, all over my clothes and the nurse was like "OMG, Dr. K, she's bleeding!" and they pushed me back in the chair and covered my nose with gauze and I thought I might puke or faint. I have NEVER been light headed with blood or pain, but I am telling you all, that I thought I was going to pass out, so the doc gave me a SMELLING SALT. that felt great having a little whiff of ammonia in my newly gouged nose.

Anyway. I survived the ordeal but I will NEVER. NEVER. do this again. N E V E R!

My head does feel better though ym right eye is still agitated. I am thinking positive that there is an end in sight to all this. please.

this is the balloon catheter they use. The implants are about the same size, maybe a little thinner with these like grappling hook things attached to it. If you're real ambitions I think they are called micro something spacers

Friday, March 20, 2009

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.

Wednesday, March 18, 2009

used to know a girl, had two pierced nipples and a black tattoo

* My splint is out. Lisa, you must be one tough bird, because removing the splint hurt like hell. Even with a numbed nose. Ugh. The worst was when he used some sucker machine to get all the gunk out, felt like my brain was getting abortioned.

* But that ain't all, folks. I have to go back in a week to get these steroid implants in my ethmoid (I think) sinuses removed AND some sort of plastic wrap is on my septum and that comes out too. He says it won't hurt as much as the splint. But I dunno. They nicely forgot to mention that septum replacement is one painful mother fucker.

* I can blow my nose now!

* which means I get great joy at blowing out lumpy green bloody clumps of junk. I keep wanting to show people, like i am just so proud of myself that chunks are coming out now!

* on top of all this, my baby had some kind of diaresha (that's what we call it because in 5th grade there was a girl in my class named Dialesha and so ever since I told my nine year old that, diarreah has become diaresha) puke virus. I was so worried I would get it and have to puke before that spint came out and the puke would get all caught back there in my nose.... I didn't. There is a God.

* this is a pretty gross post

* Honestly, people, I think pain medicine is the only thing keeping me happy. Hello Betty Ford.

* My goal is to be "happy" again by March 27 (the day after the steroid plastic extraction). Will I make it????

Sunday, March 15, 2009

my nose is built like a wound that won't heal

I thought I wouild try to document the whole sinus surgery deal, but each time I look down at my keyboard my nose starts bleeding, so....we'll see how far I get. Plus, something is wrong with one of my eyes - I have no idea what, but it feels like it got scratched or burned in the whole ordeal.

OK. So I went in Friday about 11:30 - found out I gained 2 more pounds - thanks so much body, even after giving up fast food for Lent (such a Judas, this body). My sats were 97 and my heart beat was alittle high for me, like 113 over 64 or something (I am usually pretty low, like 98 over 52 - maybe that is an exaggeration, but I have a low heartbeat).

So I farted around for like 3 hours while they all did their thing. Finally at like 2 they took me back. Guess what?! Operating rooms look just like they do on TV! Go figure. They got me warm blanket, my doc gave me a little grandfatherly pep talk nd the next thing I knew people were annoying the fuck out of me asking me to sit up and take big breaths and yadda yadda.

I don't think I could open my eyes for like an hour after the surgery. They gave me dilauidid and fentanyl and I tell you, neither worked. It was the same as when I had demerol during my son's birth - I could feel the drugs but also still the pain. Anyway, somewhere in there my sats went down to 88 and my heart beat went up to like 130 or somerthing and my face turned all red so they were all kinda freaking out. But they would not give me even an ice chip and I kept trying to tell them in my morphine haze that I would be able to breathe so much easier if my swollen dehydrated tongue wasn't constricting my airway, but no one was listening.

So the sugery was only supposed to take 1.5 - 2 hours but took 3 because, as my doc told my husband, there was A TON OF SHIT IN THERE. Oy. and then the whole red face heart beat sats thing took an extra while as well.

I think my face got red because they heat you up in some bag. I get very red in the face when I get hot, like after I work out I always look like a red faced mess, but they kept saying it was from the dilaudid. Well, here is a secret, people - I have taken dilaudid before (nonprofessionally) and it did not turn my face red. But I wasn't sharing that info.

So now I have a splint holding my new spetum in place and that is causing me some pain, but overlall I don't think my sinuses feel soo shabby. There is some throbbing and bleeding, which is annoying, but I am tolerating (with the help of my friendly vicodoin rx and some advil (the magic pill, apparently) and some ativan when i start to freak out and want to pick the fucking bloody splint out of my nose).

I hope the splint removal does not hurt.

So my sinuses have been sinuplstied and all the other ones have been ectomied (why ever they call them ectomies, I am not sure) so I hope this fixes up some problems. Please.