No more drowning in my sorrow, no more drowning in my fright

I've always had sort of this wierd obession with death. I'm sure that sounds bizarre to a lot of people...though maybe not so much the readers of this blog. But as long as I can remember, I've felt connected to death. I don't know that I have the time to properly put that into words. But here is an example: I like funerals. Not in some wierd morbid Lydia Deetz kind of way, I don't like death because I like it when people die, but I am attracted to death in how it strips people of all their bullshit. Layers come off in death. Grief is a raw emotion. It isn't that it isn't tragic, I don't want to make light of the losses people suffer in death, especially to a readership of primarily lung diseased young adults, but people seem most "real" to me in their saddness.

One of the problems i have always had in this life is this pervading sense of loneliness. As I've gotten older, I have often attributed it to Cf and the isolation I felt in the disease for so many years, but even now that I am not as isolated because of my internet connections, the lonley bug still hits. It isn't always lonley in a bad way, it's more a trouble connecting with the world. I once wrote:
How do you explain lonely? You have to slow down to do it. I don’t think lonely people ever move fast, that’s part of the problem. You can’t keep up so you give up trying. It’s the way you can be in the middle of a group of people, but you’re the only one trying to hear the background music.

I feel like I can't connect with the world because so many people seem so full of shit. Sometimes I feel like it is clear as day how people are hiding from themselves. You hear them talking but it's almost like "Annie Hall." You can see the meta-thinking inside thier brains, excpet it seems like THEY have no idea. I realize this is already riding the edges of not making sense. I always default to my old standard, you just have to "get it."

But I am not afraid ot talk about death, I am not afraid to cry. And I feel this connection to saddness and grief. I think maybe, besides the losses of people I've loved, I have always held onto this slight sense of grief for myself.

Yesterday my stepmother and the hospital she works with hosted a "Grieving Out Loud" seminar given my a singer named Cindy Bullens. I hadn't heard of her until my stepmom started listening to her after the death of my stepsister. I wasn't all that drawn to the music either, mostly because it just isn't really my style. the workshop was differnt though, it was the story behind the music.

Bullens lost her 11 year old daughter to Hodgkins disease and from that loss came an album called "Somewhere Between Heaven and Earth" and from that came this workshop on grief, which really isn't a workshop at all but just Bullens' story.

At these types of events, you get all types of people: those who just want to be seen, those who truly want to learn, those that come for the free food. I stood rather silently at the reception/hors d'ouerves prior to the workshop just taking people in, watching, doing my alone buisness (part of lonley is my hatred of small talk, if we don't get to the meat of it right quick, I don't want it).

Bullens dips right into the meat of things with her presentation, immediately taking you into her grief in losing her daughter. Coupled with her music, the experience was intense. And that is why i feel an affinity to death. The room was connected, we were sharing our pain. Not everyone there had lost a child. My thoughts strayed from my stepsister Kelly and my stepmother's experience in losing a child, to Paul and the way his death took me to my knees in a way I'd not expected, to the horror of losing my own children, to the fear I think my parents must encounter when they think of losing me.

But it is fear that holds us back, keeps us quiet, trips up our dreams. So when death bubbles that fear up to our surfaces I think we forget about all the other things we are afraid of. So funerals and shared encounters like this workshop sometimes feel to me like the few times where people are truly real. And there is a beauty to that. There is a beauty in the release of a person into death, not by their dying but in our letting go. I think the letting go is the truest act of selflessness and the scariest.

While I feel powerfully about these expereinces, the connections we make in these moments, I can't pretend to say that my own fears don't hold me back. They do.

I can talk to people about death. I can ask them about their loved ones, talk about my own. I am not afraid to say the word 'dead.' I'm not afriad to talk about my own death. but I have not mastered letting to and I have not shed fear. the workshop brought all kinds of feelings about my own mortality and death to the surface and I am not afraid to examine them here in the safety of my blog, but i was afraid to talk about it last night. Not afraid to talk about my death. Afriad to talk about its likley root. I still have not mastered CF talk and I feel it holds me back in some ways. That perhaps for all my talk about the connectedness of sadness and grief I can't let go of my own fears and really tap in. It made me wonder just how full of shit I might really be.

What does my "Annie Hall" meta balloon say??

and where I am, thou shall abide

Grieving seminars for parents and physicians to be held this weekend

This is my stepmom and my stepsister Kelly's story. She died 9 years ago this week. She was also a tissue donor in death. I had never even seen the news coverage of her accident until this news story. Watching it brought back a lot of memories. It is amazing how fresh these wounds can be even almost a decade later.

I read the news today, oh boy

I think that probably 90% of my blog readership is from other cystics. But, I know there are a few friends who have stumbled upon it and I get tons of people from various foreign countries who pass through when my blog is the "next blog" on the blogger reader list (or however that works?) - so, in light on what I've seen on some other people's blogs, because it is Cystic Fibrosis Awareness month, AND because my husband and I are TOYING around with the idea of SSDI (more on that later), I thought I would present my CF day. It is not as rigorous as a lot of folks out there, but certainly my time is compromised by el diseaso.

Here is a weekday schedule:


take azithromycin (MWF) prophylactic


Vest. 20 minutes with simlutaneous nebulized hypertonic saline and albuterol. Generally the nebs take longer than the Vest and so this routine takes about 30 min.

Treadmill. I run apprx 20-25 min, somewhere between 1 -1.5 miles. On a good day I run the whole time and cough minimally. On a bad day I run/walk, and cough so much I have to hold my crotch so I don't pee my pants when I cough but I usually do anyway and this is why I do not run in a gym. I run 3x/week.

inhaled colsitn in the eflow nebulizer. This thing is supposed to be fast, but mine for some reason isn't, so this takes about 15 minutes to inhale (while holding the handset which means if I do anything, I do it one handed)

after this it is important to immediately clean the elfow parts. I do this in two steps, first the metal head piece, then the plastic parts.

lastly I inhale my advair, 50/500 - sometimes I do this before the colistin, but a lot of times I forget.

eat. I take 4-6 Creon per meal to help with digestion and absorption of my food. I also take 2 ADEK vitamins and one Vitamin D with calcium. Due to osteopoenia I am on 2800 IU of vitamin D/ day. We hope this will work to raise my vitmin levels and keep further bone weakening at bay.

Saline nasal wash with my neti pot. I use Neil med packets if I have them or just regular old sea salt (from my friendly natural grocery store).

squirt of Omnicef into the schanz to help keep sinuses open.

now it is somewhere around ten. If I need to shower, I do it, otherwise I get dressed and then gets all kids I have ready and my day has begun! I am pretty free to do what I want unless I have some sort of doctor appointment (CF clinic, ENT, rheumatologist, etc).

The only real reminders of CF throughout the day at this point are my cough and the enzymes I take EVERY SINGLE TIME I EAT!

After dinner and kids go to bed, routine starts up again:

vest/hypersal/albuterol - 30 minutes
eflow colsitin and cleaning routine
inhaled advair 500/50

this is the part where I should tell you I boil my nebs everyday, but the truth is I don't. But today I will - so add another 20 min or so for boiling nebs.

If I think I am getting sick I will do another nasal wash before bed.

other randomly added meds that i use when need be and can, in some way, be related to CF:

ativan
ambien
advil
narcotic pain killers
mucinex
zantac/tums
miralax
metamucil
acidophilous


None of this includes what I do if I am sick - this is a healthy day at 70% lung function. No, it isn't horrible, but it is demanding. It does require some discipline to do treatments (and exercize) when I REALLY don't want to.

take another little piece of my heart now baby

IOPO talk on local news

I went to my first IOPO (Indiana Organ Procurement Organization) presentation today. My stepmom has been doing this for several years with another woman from my clinic who is now 10 years post TX. I'd never heard my stepmom's presentation and I have never met Maria (though we have the same ENT and I know a lot about her from him - so much for HIPPA!!)

It was really hard to listen to my stepmom talk about the day my stepsister died. I'd really never heard her tell that story before.

It was May 25th, 2001 and I had put my son to bed, he was just 18 months. The phone rang. It was my younger brother. He said, "Kelly and Dan have been in a car accident and you need to get to the hospital." I asked how bad it was. He answered, "It's not good." I called my mom who rushed over to watch my son, affixed a silver crucifix to my neck and left. I'm not overly religious in a Christian sense and oddly enough, at that time of life I was really turning to the music of Bob Marley for spiritual inspiration. But the crucifix seemed appropriate and that action stands out in my mind. As a quick aside, Bob is not all ganja and beaches, you should take a listen, also, Rastafarianism has Christian roots. Anyway.

When I got to the hospital, I asked at the desk for my stepsister assuming they woud lead me back to an examination room where maybe she'd be hooked up to some monitors. But when they looked at one another and then took me to a small room where my step mother and stepbrother and a doctor sat silently, I knew it wasn't good. When the chaplain walked in, I said, "Oh God." and I knew. Kely had died from massibve trauma when the side of the car she was riding in was smashed up against a tree. Kelly was 24. She was also a tissue donor. They took her corneas and her skin, I know for sure, though I think they may have taken some bones as well. She died on the way to the hospital and wasn't a candiate for organ transplant for that reason.

It was also awakening to hear Maria's story as a cystic. Although I was in tune with her story as it is one so many of my friends are living or have lived nearing or in the throes of end stage lung disease, it still felt like this neon reminder of the path that CF inevitably takes.

I had asked my stepmom, who included my CF story in her talk - one daughter who was a donor, one who may likley be a recipient, not to call me out. It was odd to hear her refer to me in the third person though. But then when Maria spoke (who I had just met that day) I got the big fat call out when she referred to me (and pointed!)a few times in her speech. But you know, it was OK. I realize that is how far I've come in this. I was Ok with having a class of 50 teenagers look at me as the sick Cf girl.

I then registered myself online as a donor. I have been registered on my license since i have been driving, but I never did the online registry. I figured I should. Even though I usually feel like my future is neatly mapped out and the ending has CF stamped all across it, I guess you never do know.

I'm in with the in crowd, I go where the in crowd goes

I'm in a funk. I know, I know, I am always in a funk. The truth is, not really. But the past 6-8 months have been not so good and I tend to write when I am down rather than up, it is my catharsis.

My trip to Boston was amazing. I've never done a CF meet up, never went to camp or any retreats or conventions. I met Paul and that was amazing in itself, but to look at the picture of 15 CFers in one place takes me breath away (bad cliche, sorry). It was just so awesome, I was overwhelmed by the beauty of it.

Standing at the cemetary, looking at Paul's name on the grave and the ahses and the purple rose and the faces of all the people who came to celebrate his life moved me in a way I can't explain. And maybe, just maybe, it made me a little less scared about CF. Which makes no sense at all since I put myself in the most germ precarious situation of my life - but you get the point. Not that I am not still frightened of the gravity of Cf, because I am. While we were in Boston we lost two more, CF is a nasty mug. But I feel secure in the comminuty I have chosen to participate in. The Cf community as a whole is wonderous, but I don't know every CFer on earth, only the CF community I am a part of, the folks in the picture and some lots of other special ones who weren't there for whatever the reason. You guys have my heart.

I feel like I carry a lot of baggage around from Cf and it manifests in some not-so-nice ways sometimes, so to know I have the support of my CF community means the world to me. Truly, no one but you all can understand. Not for lack of trying, but you gotta have it to get it.