Updates, Streams of Consciousness, and Open Letter to All You Peeps- OH MY!

Hey everyone, So I've been out of the hospital about a week and a half. That seems crazy to write and I even had to say to CysticMommy, "Really only a week and a half?" - so much and yet, nothing at all has really happened. Here are the deets:

The first weekend home, one of my oldest friends C-viddie^ made the long journey from our hometown to see me. This was only one day after I got out of being in the hospital for a month, so he was thrown right into the world of IV meds, nap-taking, BiPap wearing, and generally energy-less activities. Even so, we boldly went to see Where the Wild Things Are, which I really enjoyed! It is right up my drama-teacher-ally and I love the book. It was a puppetty-muppetty good time. But exhausting!! The rest of the weekend was quiet and we had a good time. He is one of my closest pals and I felt very thankful to have him come see me before my transplant. I canNOT wait to see him after.

Then next week I was able to stop my IVs because it had been 30 days straight, plus the 30 days prior that had only ended in September. Time to give the bod a break! Sadly, my Pulmonary Function Tests (PFTs) had not improved from the day I entered the hospital on 10/12. That really disappointed me. My FEV1 is 15% still, even after the month of meds and all. I am trying not to be too disappointed in this, and realized that the name of the game is to stay as healthy as I am now until I get my transplant.

I also started Pulmonary Rehab and I love it! I am doing all sorts of exercises with a trainer who is helping me learn how to breathe appropriate with such a little amount of lung capacity. I have retained a lot of the strength from before my hospitalization, in some areas like my legs. In other areas like my arms, chest, and abdominal muscles ("the breathing muscles"). I am learning to fight my ever growing instinct to breathe really shallowly. So yadda yadda yadda, I'm trying to get my abs of steel back and I've been approved to work on my buns of steel on my own time. Jackie Warner would be happy.

This past weekend, I had another oldest friend, M-Lobby^, come visit me. We made a great dance video, and watched an obscene amount of Bravo on television. We thought that our activities of sleeping in late, eating toasted cheese sandwiches a mother made, and eating chocolate while watching stupid television and occasionally talking about high school gossip and boys, was not altogether that different than what we have ever done together. So that's good. Nothin's really changed. M-Lobby has offered to come here after my lungs are here. So I look forward to that.

My Muzzy (CysticMommy) and I are having a really great time. Every morning I awaken to the sounds of my Muzz on the treadmill. I believe she does this only to be able to gloat over me until I, later in the day, exercise. Then, we usually have breakfast. Muzz does an amazing job of changing up the breakfast options to increase the likelihood that I will ever eat breakfast. Then it's meds, chest p.t., exercise, bipap-nap, meds, eat, daily guest, get ready for bed, sleep. In between that we have lots of cat-related comedy and doctor's appointments and prescription filling and high CMommy and CGal fun.

And that's how the days go. We lose track of the dates really easily and didn't realize that "OH MY! Thanksgiving is NEXT WEEK!" until today.

That's how it goes around here.

Still waiting for lungs! One month on the list, as of tomorrow!

Thanks to everyone for your thoughts and prayers and kindness and support. It means a lot to me. Especially you bloggies and twitter-readers - I never knew how supported I could feel by other CFers that I have never "met" that I yet feel that I now know.

Goodnight and more soon, maybe even a stream-of-consciousness post, or a poem!!

Love, CG

Quickie post

I don't have the energy to post all the update but just wanted to say hello. Things are progressing every day. A little better and a little closer to transplant. Still in the hospital. Don't know if I want to go home or not. Don't know if they want me to go home or not. A little sick of hearing every one say, "Obviously we don't expect you to make much improvement, but [insert thing they want me to accomplish anyway, even though they just told me I won't be able to do it.]"

But f that, I say. I walked for 10 minutes today and did not have a deep de-sat until I stopped walking. Down to 8L exercising, 4.5L resting.

Did my will and my power of attorney and all sorts of my "bidness" with my parents over the past few days.

Preparing for surgery. Making a music list to push on the surgeon because word on the street is, "He's into that."

Still enjoying Florence Nightingale Syndrome, hoping to further develop it for Tx team.

Still enjoying time in the cocoon I have made for myself that I am realizing is my family and my friends that are as close as family. Glad I made this cocoon and that it gets smaller and simpler everyday.

Now, to sleep. With Bipap.

Love, CG

In the Year Two Thousand . . . In The Year Two Thousand Nine

Me at home on Home IVs Day 2: 2nd Day of Home Workout, post-hemoptysis. More on revised exercises sitch in later bloggies . . . P.S. Who knew that a port, and a tube top, go so well together? Ah, home gym in the corner of my living room, I love you so. I would gladly forego new blue jeans and fancy I-Pod for you anyday. If only the other CFers would all do the same. Sigh . . .

ON TO THE REAL POST:

In the Year Two Thousand . . . In the Year Two Thousand Nine . . .

Lately I've been asked my many Readers to tell more about my CysticGal demographics and specifics. Hard to do when CG is still in the semi-anonymous state that you read here. I'm going to dive on in and just keep using my very secretive, highly strategic pseudonym creation calculation to tell the story of CG. Just so you know, I am only keeping CG semi-anonymous so that if people google my real name for work-related stuff, they don't get this blog. The people in my life know that I'm writing it, and you know, it's really me, CG here. :)

I am going to have to do this in shifts, so everyday I'll add more posts to the "Who Is CG?" section that is rolling out, and then when it's all out there I'll edit it together for your reading ease. Okay...

I am getting more questions about my situation right now, than I am about my situation in the past, so I'm going to tell the story of CG backwards. Those IRL friendly readers may laugh, here she goes again, writing all chronologically-askew. So sorry. It's the way my brain works, man.

Right now, in the year two thousand nine, I live in new england. Demographics: I am 29 years old. I am a Gal. I have CF. I do not have CFRelated Diabetes. I have a history of Pulmonary Endometriosis and have heard varying opinions on whether that is the same thing as catamenial hemoptysis. Either way, I have that too. I weigh about 98 lbs. and I'm 5' 1". I just had my first Port-a-Catheter placed last week. Prior to that, I think I can count 6 or 7 PICC-line placements in my life. Prior to my first PICC line in the year 2000, I had not had a hospitalization since approximately 1988. My health was managed with outpatient courses of oral antibiotics through my late childhood and adolescence.

The meds I take have not changed that dramatically since, I'd say, 1995, other than when I am having an acute exacerbation. In 2005, after moving to new england, I had a year-long battle with catamenial hemoptysis that ultimately resulted in me being diagnosed and treated, very successfully, for pulmonary endometriosis. Recently, I experienced a big bought of catamenial hemoptysis again, and was treated presumtively for pulmonary endometriosis. I hope that this treatment can ironically lead to an up-swing in my health.

As of 9/1/09, my FEV1 is 16%. In May of 2009, my FVC was 31% Predicted (FEV1 22%) after a course of IV antibiotics. Prior to that course, in October of 2008, my FVC was 43% (FEV1 28%) after a course of IVs.

I am single single single. I have no kids and 2 cats, S-Purry^ and B-Kitty^. I have a few close friends and a lot of long-term friends back home where I grew up, which is not where I currently live. I have a lot of really close work friends because I work in an industry where your work and your social life are sort of mixed and oddly intimate. That makes me sound like a prostitute. I'm not a prostitute. Jeeez. This paragraph is going in the wrong direction. I'm a drama teacher. Now the googling stats for my page are really gonna soar though, so I'm leaving it!

Anyway, back to the facts: I have two siblings. One is four years older, CysticLady^. One is 18 months older, CysticSibling^, a boy. My parents are married and live far away from me. My Csiblings also live far away from me.

My sister, CysticLady, has CF and is five and 1/2 years post-transplant. I believe that she and I carry the same CF gene (there are different variations, I believe we have the same one). My sister was transplanted at the age or 27.

My brother, CysticSibling, does not have CF, and I believe that he does not carry CF either.

There is no other history of CF in my family other than possibly a great great aunt on my mother's side who died very young. However, she could have had TB, right? I believe that I inherited my CF gene from my mother's father and my father's mother, but I could be wrong about that.

I am a theatre artist and teacher by trade. The only way I have ever made a living, with the exception of 6 months of nannying after I got into grad school but before I started it, is by creating theatre, working for a theatre, or teaching others to create theatre. But that isn't the topic of this blog, now is it? More on that topic later.

I work full time, though I'm currently on a short leave to attend to my health.

More tomorrow. Love to all,
CG from the CG-at-home-Hospital

Metaphor Du Jour, a note to a colleague explaining my health

p.s. I found this image just googling "metaphor car lungs images"-weird huh?

Note to Readers: I'm a post ahead of myself so this is the Wednesday night post.
It went up, unedited, last night on accident :)

Tonight, I wrote this to my longtime colleague regarding our current project and her worries that my work is getting too intense, as hers is getting less intense while she deals with family health issues that are pressing. I share it with you because:

a) it contains the metaphor du jour

b) it is a good sample, i think, of how to articulate quickly why I want to work as much as I can work right now

c) it's a good reminder that within whatever a CFer deals with, s/he must also remember that personal challenges surround us. We can do for others what we need done for us.

d) It shows that in a short time, one can become comfortable with something that once seemed insurmountable, as I have become comfortable wearing oxygen in front of my students when I need to.

Here goes . . .

"L--,thanks for this message and we'll talk (hopefully) more tomorrow. On my health issues- the only thing I'm really having trouble with is sustained cardio like walks, when I have to wear my oxygen, and mornings are sort of rough because of the oxygen issues. Other than that, I am really in good health and spirits and being active is the best thing for me (and my spiritual health/mind) right now. So I love that I'm able to help you with this project, seriously. Also, now that I have my Handicapped parking, my entire day has gotten a lot easier.

[I wish I had applied for it when my sister told me to, a year ago!]

I think of my lungs like an old car. They can go on lots of short drives but when they go on a road trip, they are in trouble until they make it to the shop. The oxygen is the shop :)

I am fine with regular activities and even being very active in class and rehearsal, but long bouts of formal exercise are what wear me out, and I need to use the oxygen to keep from feeling very fatigued. With our teens, in particular, I would not hesitate to wear it in rehearsal if I need it. They really don't care. Some of the kids we will have, have already seen it at other rehearsals around town. I'll wear it if I need it, and when I wear it, I can do whatever I want. It's really a great freedom for me.

I'm more used to this now because it has been this way since the winter, and even worse since about May. I don't really know what my year ahead holds, but I could be in this sort of state for a few years even, so I want to make sure that I'm being as active as I can not only because it's the best for me, but it is also the best for my lungs. :)

Let's talk more and just know that the [artistic institution I work for] family will rise up to meet you if an emergency arises or if you are behind in the planning. We are a teaching artist ensemble! We should practice what we preach. :) I am honored to do whatever I can, that you need. Seriously."

Feel free to use these words (or your edited ones) in an email to your colleagues when they say,

"I feel like you're doing too much."

and you read or hear

"Stop doing what you love."

Because I know, that can be a hard conversation to enter.

Goodnight!
CG

Putting the "Gal" in Cystic Gal

Today is the first day of my very horrible terrible mind-numbing fist-pounding-on-my-desk crampy did-I-already-type-the-word-terrible period. I have to go back to the couch. Some other day I'll rant about this and its Cystic connections and my diagnosis with Pulmonary Endometriosis 4 years ago.

That's all I'm going to say about that for now.

I have to go catch my uterus. It's falling out.

CG