it's easy - all you need is love.

I haven't been able to put my thoughts together for a proper post yet. Eva's death has elicited an entirely different reaction in me than Paul's, and different yet than many of the others we lost this past year. I knew this was coming, I listened when she said goodbye. I was able to say a proper goodbye to her. Our friendship spanned many years, reading one another's journals, some mail exchanged, though we never met in person. Yet, no matter the exchanges, I don't think losing people we love ever gets any easier.

I had this feeling though, about the upcoming trip to Boston. This trip is for Paul, to honor him, but it will be cathartic for us too. Csthartic to say our goodbyes and also because I feel after a year like the one we all have just endured as the survivors we need to be together. I need to be with people who understand how these losses keep coming, like punches to the face. and who understand why I cannot NOT be friends with people who keep dying. I have to be. my life is inexplicably intertwined with all of yours, I can't turn away, though I sometimes want to. I want to go back to my safe world of denial where people don't die of CF. At least no one I know does.

But they do. They die of Cf and they die from TX and I don't think it is ever going to get any easier.

I feel I learned from Paul to love the Cf part of myself and from Eva I learned to let others love me as well. Such important lessons from such amazing people.

I know you two didn't really know each other, but I hope you're somewhere together singing Beatles songs. All you need is love.

high hats and arrow collars, white spats and lots of dollars

MY friend Lo turns 33 this week and we celebrated last night. Lo is one of few who is down with the CF thang, and sicne I know she reads this blog, I thought I'd give her a B-day shout out!





I got more to say about lots of stuff. But now is not the time.

this is what I remember most about dying

From "Controlling Death - Compromising Life":

"Choosing not to transplant means learning how to live with limitations and uncertainties that doctors cannot make go away. These limitations and uncertainties are embodied in the chronicaly ill, the disabled and the dying - they symbolize the failure of scientific medicine to control nature. In an ableist society, physical limitation, pain, and the loss of abilities stray too far from the cultural ideal of the body. For the able bodied, the disabled are the Other, a threat to life's narrative representing uncertainty, doubt and incompleteness...Technologies of normalization are instrumental to the systematic creation and control of "anomalies" in the social body (Foucault 1973, 1980)...within these technologies, the body becomes a matter of norms, averages, and deviations, transformed into something calculable and determinate rather than something shrouded in mystery and determined by fate or chance." (Maynard 214)


Yeah. so.

So it is somehow not OK to talk about death. To say, I choose not to live. I don't mean suicide, though I think it fits in. I mean simply the idea with Cf that we would want transplant. It isn't that I don't understand why we choose TX. My uncle is nearly 14 years out. I get it. Fourteen years is a huge chunk of life and what he has accomplished in that fourteen years compared to the 44 before it is great. He feels great. There is hope in that story and the stories of so many others. But hell, what about all the stories that don't end that way. Those are the ones I'm interested in because those - far more the norm that the others - are NOT the ones were suppossed to look to.

Positive thinking has never been my forte. I don't mean to say I have no hope. It is not a nihilitic approach that I take to this life, it's only that idealism makes me nauseated sometimes. I like things that make sense, that can be proven. It doesn't mean I eschew all things spiritual for an entirely materialistc outlook (as my own father might have you believe), it's just that...I don't like having my heart broken and my heart can't break if I don't let it believe in that which might not be true.

Never fear, despite how I try, this heart breaks daily. It breaks today. It's been broken for months. years maybe. and that's OK. It isn't sad to live with a broken heart, it isn't a bad point of view. It's just one that you have to get. If you don't "get it" then you just can't understand and I don't know that I have the words to show you. But Paul Simon does, "losing love is like a window in your heart, everyone sees your blown apart, everyone sees the wind blow."

I think we live more fully by allowing ourselves to feel the pain of the world rather than pretending "everything will be OK." No, it won't. and it's OK that it isn't OK. Except we're not suppossed to talk about it. I'm not supposed to tell my family - my family with the history of a CF uncle 14 years out of transplant - that I might be OK with dying without TX. and yeah, I know, I have kids. I owe it to them to try, right? But do I? Would it be so bad for them to witness the death I was meant to have, the CF death? Versus the death that science could give me, the TX death? And is this all easy for me to say, simply because I don't feel the presence of my own death right now?

Because I am pissed off that I keep losing people I love to death. Because in my own way, the ultimate FUCK YOU to CF might not be fighting the death but giving into it with grace. Turning the other cheek and saying to this body, "I forgive you, let's go now."

I think I can I think I can

La clinica. Things is good. FEV1 71%, FVC 90 (wow), 25/75 33%. Looks like this l'il engine is back in business.

Synergy tests and MAC results were not back yet. My guess is a no on the MAC (I hope) since PFTs bounced back pretty easily post abx. I hope so. I am in no hurry to be on long term abx. Cepacia was a no. I figured it was, but it was nice to hear anyway. I hope the synergy results show some good options though, since the working antibiotic list seems to diminish with each culture.

AND, I ran for 10 minutes straight this morning. I've been treadmilling every other day for three weeks routinely now. I had this revelation about running. Fear. I was afraid of it for some reason. I'm not sure i can explain the reason but only that I recognized it. I pushed past it. I'll be running a mile in no time - something I have never really been able to do.

I remember in my first yoga class years ago, one of the girls talked about fear. and I was like "Fear? In yoga? whatchu talkin' 'bout, Willis?" but that comment always stuck with me, and I feel like I get it now. So at that moment where I want nothing more than to STOP RUNNING, I keep going. And amazingly, I live through it and get a second wind of sorts. It's pretty cool. This is one of the things I have felt the proudest of, for many reasons: because I hate running though I have tried to do it sooo many times over the years, because it is hard to keep doing something you don't like to do just because it is good for you, because I am seeing the results. I have had the idea of a triathalon in the back of my head for years now and suddenly I can actually imagine accomplishing such a thing.

So a few posts back I started using some writing prompts from a magazine I read called The Sun. I don't think I had an overwhelming response of participants (or any)joinging me in the prompt writing department. That's OK. But, offer is open again if you want to join in. This month's topic is "slowing down." Seems like a no brainer for a CFer, but you can take it where ever it may lead. I'll get around to writing on it in the next day or so.

Peace out, homies.

bring it to me, bring your sweet lovin,' bring it on home to me

I was de-picced yesterday morning. This was the easiet (of the three) round of IVs I have had yet, and I was actually a little hesitant to have it pulled. But yet, that little undying denial bird just wouldn't let me request four more days. I do feel better, that isn't the issue. But the thought of getting sick again soon, of needing IVs in the near future (which would mean thinking about a port because I am NOT into the PICC-line deal) I mean, that was almost - almost - enough for me to say, hey! let's do another four days just for the fun of it! anyway, PICC is gone, shower taken, feeling better.

In fact, I am feeling enough better that I treadmilled Monday and today and actually ran at a decent clip (as much as I could, which isn't much at all) and there was no coughing (and thus no pants-peeing). so sweet. My energy level was almost back to normal.

Here was today:
7 - up, kids up, lunched packed
8 - vest, nebs, treadmill
10 - bagel with daughter
post office, fabric store
12 - lunch and playing and computer
1 - finished 1 out of 3 Roman blinds I am working on for the kitchen
2-5 sewed up a cute little skirt with some fabric I have had for a few months. Turned out great!
5 - cooked dinner, ate
6 - bathed kids, did homework with kids, cleaned kitchen
7 - vest nebs
8 - kids to bed
9 - me time, computer, movie? rum

so...not that anyone needed the run down, but I feel quite productive.

I was going to write about transplant, as that has been muddling through my head a lot lately, but I think that that will take this post in a direction I am no longer in the mood to entertain.

Just joined Netflix. Found a movie on there that I have had on my Amazon wish list for like 7 years. I thought it would never come to the U.S. That's right - FORIEGN FILMS. I love them. The first question my husband asks me when I ask him to watch a movie is, "Does it have subtitles?" But secretly, I think he likes them.

oh mom, I wonder when I'll be waking

Things have been...meh. OK.

I am on IVs, tobra and aztreonam. What I enjoy is that each infuses over only a half an hour and the tobra is every 12hrs, the other every 8, so I get to sleep and I am not hooked up for an ungodly amount of time (like November's IVs of Levoquin which infused over an hour and a half and zosyn which was at an exhasuting every 6 hours). SO that has been good, makes it not seem too bad. Though I have not bathed in four days now and I look a bit slimey.

I did talk to my family and they have been helpful. My mom cooked a bunch of dinners for me so I don't have to worry about cooking this week. and my dad, well...he's convinced if I just accept god into my life things will be better. I know he means well, I also know he has no clue what I think about God, so we'll just leave it at that.

Still, people want to call me a lot to see how I am. I want to be grateful for their caring, I want to be, but when the phone rings I am loathe to answer. Because you know, people get tired of you saying you're not feeling well. So I just end up lying and saying I feel good even if I don't. Just this morning my mom asked and I said yes, I feel better (which in this case is true) and she said "well that makes me smile." and I know as a mom what she means, you worry when your child doesn't feel well. I do understand. But still, I couldn't help but snarking, "as long as it makes you feel better." I know I can be a shit sometimes.

Emotions have still been wacky, though I think even some of that is resolving.

I do think I feel better. My FEV1 was at almost an all time low of 52, and I still feel a little SOB which I worry is permanent damage from being sick for 2 months, but a lot less is making it's way up from the depths of my lungs, so that is good.

I am teaching a technical writing class this semester and so I am working on putting together a syllabus while still waiting to hear about my proposal for my master's thesis...so things are keeping me occupied, which is what I need.

Not much more to say, I guess.

Narrow Escapes

I remember quite well typing “cystic fibrosis” into the search engine. I was at work, it was the fall of 2005 and I was on my lunch, maybe even my plan period. I was teaching 6th grade bilingual at a rough school on the west side of town. I had a small class, only about twelve students, and I loved them all very much. Often I was simply called “maestra” or more often than not, “mees!” Still, teaching is an emotionally and (for me, anyway) physically draining job, and I often used my lunch period to decompress, relax. So I don’t know what led me to search for CF that day, only that I did.

My first post started out like this: I am new here and I have been posting like crazy because I never talk to people about my CF and the few people that I know with it are "sick." I have read about so many healthy people here, it's great! I was 28 and sort of oblivious to the role that CF was playing in my life. I thought I was healthy, I thought I was “different;” I didn’t even know how to read my own PFTs. I was trying to get pregnant. It had been almost a year of trying to conceive with no luck. I already had a six year old boy, one whose conception took very little effort to achieve. I’ve always felt each of my children’s births had their own life saving purposes in my life, slowing me down, making me more aware of my mortality, but I wonder if something inside wasn't nagging me to take notice. Something had changed between age 21 and 28, something was hindering this conception or perhaps there was some reason, unbeknownst to me, why it wasn’t happening easily. I have no answers to why, but I know what happened that day: the penny dropped.

I have often wondered, what would have happened if I hadn’t put myself out there that day? Where would I be in the CF game? Over the four + years since that day, I have started using a vest, nebulizers, inhalers, got updated on Ct scans and lab work, had sinus surgery and had IV antibiotics. All things that were long overdue but that I learned were prophylactic rather than defining. I’ll never know, of course, what difference that first post on the CF forums made in altering the path that I am on, but I feel deep inside that it was purposeful rather than coincidental. Knowing not only the health benefits I’ve reaped since that day but the emotional and spiritual advancements that I have encountered as well, I believe fully that had I searched for “Urban Outfitters” or “Captain Morgan” that fall afternoon, things would be incredibly different.

**If you have not read the post below this, please do. And write your own Narrow Escape story...use the topic as freely as you wish!!**