Thursday, December 31, 2009
Bonuses to Subscribe:
Previously stated: No checkie the site, no wastie your times.
Not yet stated: Read everything I post -- even stuff I regrettably take down. oooohhhh....juicy!
Still have a link right to the site in your email - if you read a little bit and want that full CG experience.
If you do it TODAY, you can say, "I've been a CG Subscriber since '09!" and look down on those latecomers in 2010 who try to jump on the CG Transplant Bandwagon*
If you get updates to your email, this means you'll be more likely to hear right off the bat that I'm in or out of surgery, since my Cystic Lady will surely update my bloggy as soon as she can!
Like I said, CLICK HERE, do it today!
*I am currently painting a wagon and training a tiny group of kittens to play instruments in it for the day of my transplant!
Wednesday, December 30, 2009
a) I am having fun with the options on my webcam
b) I look less shitty tonight than I did last night
c) I adjusted my volume settings so you can hear me
d) The voice/visual still seem slightly off. Is it me, or is the audio ahead of the video? Pls respond.
e) I miss teaching little kids who actually enjoy my desire to pantomime most words as I speak them (see below).
Tuesday, December 29, 2009
Friday, December 25, 2009
Ain't ain't a word that goes along.
Ain't ain't a word to say for holiday jingles because
Ain't ain't a word to sing in song.
I ain't sure what the new year will bring me.
I ain't sure what it'll bring to you.
I ain't sure that this poem can fit under your tree because
I ain't sure that this poem will do.
see? it only SORTA works.
I hope I feel just like this on the night of my transplant.
More tomorrow! MERRY CHRISTMAS!
Thursday, December 24, 2009
I heard back from my surgeons and team in regards to the questions I posted. In fact, I received 4 responses, one from my surgeon, two from other physicians on the transplant team, and one from the social worker. I was very glad that they took the time to each email me back. It really put me at ease to know that they were listening to my concerns. Here are the two most informative responses:
Let's see what I can answer for you.
[Question: What invasive procedures are done during pre-op while I will be lucid/awake?]
1. Most of the invasive procedures are done with you asleep.
[Q: I am using the recommended book, _Prepare for Surgery: Heal Faster_. I made my healing statements and will bring them. Will I have time to tell the anesthesiologist about them? Can I also bring them for the ICU nurses?
2. People will in fact respect your requests for healing statements. Bring then with you, and any special instructions. You will meet with the anesthesia team in advance of getting sleepy and can discuss your needs.
[Q: Do you take music requests?]
3. Music requests, YES. if you send me the music in advance I load it on the iPod, if not, then you get the best genre I can muster with what is on the iPod.
[Q: Please don't remove my PORT during the surgery.]
4. Thanks for the update.
[Q: I'm making lost of progress at rehab.]
6. Have a peaceful holiday yourself. If you have any other questions or needs just let us know.
- [Dr. CJet^]
although many questions are related to the surgeons and the day of surgery, healing is a holistic process. bring your statement and music and have always copy that your family can handle to the different members of the team.
Make the most of rehab, as
[Dr. DJet^]^These are pseudonyms created using the super secret CysticGal pseudonym creation equation.
So, those are some pretty great responses to my questions, and they put my mind at ease. YAY!
More news later! Ho ho ho, Merry Christmas!
Tuesday, December 22, 2009
Sunday, December 20, 2009
I will perhaps write a poem later today. It snowed here, so ... you know...lots of indoor activities abound.
Not that I get out a lot anyway.
So the news around here is that there ain't no news. I'm not sure why I talk with a twang in my blog and not in real life, btw. Ain't ain't a word I usually say.
Anyhow.... a day in the life of CysticGal is such that I decided to start to email my surgeons because I am so worried sometimes that they forgot all about me, even though of course they cannot forget about me because UNOS is there to tell them when they find the lungs that are for me. But I have this nagging feeling, which Dr. UBird^ tells me is not uncommon, that my tx team has forgotten all about me since my tx evaluation was so rushed while I was so illlllllllll in the fall. I did not get to know them though they got to know me - though I can't remember much of it at all!!
So, here is the email I am formulating today, a sampling of things that are on my mind, a day in the life of CG:
Dear Dr. CJet^, BJet^, and Dr. DJet^,
Happy Holidays! I wanted to email you with a few questions/concerns regarding my tx surgery so that if I "get the call" before my next appointment I'll know that I sent out these questions.
1) What parts of the pre-op procedure are done in the operating room while a patient is awake and/or lucid? I figure that peripheral IVs will be placed, and I have a port. Are there any particularly invasive procedures done will awake? (Other than CXR, blood work, EKG)
2) I am using the _Prepare for Surgery: Heal Faster_ book that is recommended. I am going to bring my "healing statements" with me to the ER to give to the anesthesiologist, for her/him to say to me as I'm going under. I will also bring some instructions for my ICU nurses. I don't know if people really use them or not but it'll make me feel better just to bring them.
2.5) There is a rumor that Dr. CJet takes music requests for surgery. If this is true I will provide such a request. :)
3) So that the team is aware, I am now on 10mg of prednisone every other day, and about 1/2 way through the 12 weeks of Pulmonary Rehab at St. ESaint's^. Making a lot of progress.
4) I would like to keep my port, if possible. Please try to avoid removing it during the surgery.
5) I have begun seeing Dr. BThink^ on an outpatient basis for my psych follow-up.
6) I am taking "Azli" or aztreonem on a month on/off basis in rotation with TOBI.
Thank you for taking the time to review this email. Have happy and safe holidays, -CG
So that's the end of that email. What else should I ask my surgeon? What are your experiences with these questions? More later!
^These are pseudonyms created using the super secret CG pseudonym creation calculation.
Tuesday, December 15, 2009
Friday, December 11, 2009
First of all, the poems are not about you. Or you or you or you or your mother or your husband or your doctor or your blog or your email or etc. My poems are only about the very words that are in there. If I wanted to just say something outright about me or my feelings or my friendships, I certainly would just try to say it, or like every other good American, I would just pine on it for days and get a migraine. :) Poems, for me, are about all sorts of experiences and ideas and feelings and observations all mish-mashed-platoonked together and zoopled out into their form. When someone asks, "Is that poem about..." my answer is usually "um . . . maybe. I guess so, well, not really . . . I don't know."
I just wrote a poem that some could read literally and think it was about my doctor and my very last doctor's appointment- not at all. It was about a general feeling I have at the doctor and general language that is battered about at the doctor, and mish-mash-platoonk, a bunch of other thoughts and feelings into a poem. But why does it matter what I thought the poem was about? It does not matter.
I think poems are just exactly what they are when the reader reads them. In theatre, I always tell the young actors, "if the audience sees it, they're right," because young actors always want to say, "you didn't get my scene, it was about . . ."- but the truth is, if the audience sees something clearly it doesn't MATTER if the actor thought they were showing something else. Same is true for poems. Whatever the reader reads, that's what the poem's about. It doesn't really matter what I think.
More poems soon,
I am in the holiday spirit!!
And as of Friday, 2 months on the tx list. Sigh. Any day now!!
Wednesday, December 9, 2009
This is your formal invitation to follow me, @cysticgal, on twitter!
I bring this announcement to you because tonight the Tweet Cystic Fibrosis (#CysticFibrosis) community is heating up about the episode of "Mercy" on NBC. What do you think?
Here is what I think...
"Hopes no one watched "mercy" cuz its CF depiction was super fake, but maybe good to even have CF on tv. i am a woman of two minds. oh and also i didn't watch it, after 5 mins I was like, super stressed by it and its fake-ness. blood transfusion to treat lung infection?eh? down to 2L from 3L lung vol?What alien lungs does that kid have?"
The other tweets, you can read to the right or by loggin' onto Twitter, today!!
Monday, December 7, 2009
Sunday, December 6, 2009
This week has been pretty good. I've been increasing my exercise at pulmonary rehab, which has also increased my need to nap and rest :) - it's been kickin my ass!! The past few days, I've been having some "deSATs" or oxygen desaturation- around the house, so Dr. U-Bird is going to write me a prescription for some steroids, which the tx (transplant) team okayed at our last appt.
I sure do love abbreviations, or should I say abbrevs., today, 2day.
It snowed here, not much but enough for it to be enjoyable.
I am going to try to write ten poems on CG. I only have two so far lately.
I'm going to go work on number 3.
Wednesday, December 2, 2009
Tuesday, December 1, 2009
journey home. I win only one of those though
you could guess which it is - score one for me.
** I do not like the end of this poem but it's kinda funny so good enough for me to post...
goodnight, and K-Poet, I hope you're happy! :) -CG**
Monday, November 30, 2009
I wonder if I haven't been doing as many free flowing posts because now I know that a lot more people that I actually KNOW in real life are reading my blog. I had 600 unique readers last week and 200 of them were NEW. Holy pajoly, that's a whole lot of new readers. But then again if they're here reading it means they want to know what I'm thinking even if I'm thinking random thoughts.
I'm getting more and more ready for the tx everyday. I've been practicing the relaxation rituals and plug in my ipod every night so I can bring my songs with me to the hospital. I'm getting sick of waiting and wonder how many other people are there in the region with my same height and weight and state of illness. What if there are a lot? I don't think there could be a lot.
My family is settling in on all their plans to come here for Christmas and I am so very excited to host them. I also wonder, will I have my new lungs by then? I've been having lots of visitors over here- well not a lot of different people but a steady stream of the close close people and that is ENOUGH. My muzzy and I are getting along so very well. What else to write about? I don't know.
I'm getting a mssage today. One thing the BiPap does that I can't seem to get around is that it makes my neck hurt because the straps go around my head and neck and if they are loose the mask moves too much and annoys me but if they are tight they tend to pull on my neck overnigth and pooooo it hurts.
Oh well I must get a massage. Life is so hard.
Tonight perhaps a real stream of consciousness post and tomorrow perhaps a poem to please K-Poet. Or did she have another pseudonym?
I can't recall . . .
Sunday, November 29, 2009
Thursday, November 26, 2009
Ho Ho Ho! Merry . . . Thanksgiving!
2 lists: My personal Top Ten List of Things to be Thankful For, and
My CF List of Things to be Thankful For
Ten Things I'm Thankful for This Thanksgiving:
1. My family! They are truly always there for me. When I need them, they literally come running, flying, driving to get to me. My Dad would move a mountain to help me and my mom would beat up a WWF wrestler with her bare hands if she thought is was necessary for my health. My brother and sister are the best humans on the planet and accept me in all my different ways of being.
2. My friends! I am blessed to have a lot of friends. I am even further blessed to have a handful of friends that I feel so close to, I feel that they are family. I have been directed toward people who fit with me, and I seem to fit with them, from the moment I meet them.
3. My cats! I don't care who thinks it's silly, my cat Beckett has been by my side for 10 years. She has often been the only one with me in some very dark times, and she has also been with me during times of great joy. She literally helps me get out of bed every day and is a big inspiration for me to get my transplant, get well, and come home. My 2nd cat, Samuel, is also a love bug and reminds me to live more cautiously (as he is afraid of most... everything.)
4. My career as a drama teacher. When I was a kid growing up, because I had read Alex: The Life of Child, and then because I lost a godbrother when he was in college, and then because it became easier to read medical studies online - I, like most CFers, often thought, "maybe I'll live 'til I'm ____." There are many days when I'm driving home from rehearsal in my car, to my home that I rent with my very own money, to cook dinner and watch a show and etc. - that I am amazed that I have made it so far in my career and with my life and that I'm like, "Hey wow, look at my life. I live here. I'm doing this! Cool." I am thankful that all the things happened that brought me here.
5. My writing. I am grateful that writing is an outlet for me, for the better or the worse and that all of you people are willing to read it whether its funny or not, complaining or not, swear words or not, poems or not. Yesterday I found my blog mentioned on a site listing inspiring blogs for Chronic Illness and for a moment I thought, "Really?! All I do is bitch and moan on my blog!" -so I'm grateful that all my bitchin' and moaning and some jokin' is inspiring :)
(Ok, the next 5 will be more practical thanks...)
6. I am actually ironically grateful for my BiPap machine that boosts my energy and is allowing me to be at home and not in the hospital.
7. I am grateful for the Jelly Belly Jelly Beans that my friend E-Teach brought me.
8. I am grateful for Pudding Packs that I consume daily.
9. I am grateful for text messages as they are my fave mode of communication during this pre tx time. No talking!
10. I am grateful for my penguin flannel pajamas that CysticMommy bought me.
My CF List of Things to be Thankful For
1. My BiPap Machine
5. My great doctor, Dr. U-Bird and nurse N-Pregg
6. My great social worker, S-Happy.
7. The treadmill I saved to buy that allows me to exercise every day.
What are you grateful for? Happy Thanksgiving! Have a great day!!
Wednesday, November 25, 2009
"Cystic Gal" named number 9 of "100 Inspiring Blogs for People Affected by Chronic Illness" by
The Latest Advancements in Medical Technology and HealthcareAs far as I can tell, this site is kinda random. But I'm glad to be mentioned!! WOOT WOOT!
Also, my CO2 is back to my baseline of the low 70's so some BiPap relief is in sight. Also, a good follow up meeting with the tx team today. More waiting...nothing's changed...I'm still super sick but doing well. Ha?
More turkey-related-news tomorrow!
Monday, November 23, 2009
I'm just writing tonight to say hi and touch base with the readers and real life friends/family/supporters. Things are going well here. I spent 5-7 extra hours/day on the BiPap than my normal 9 hours of sleeping, for Friday through today, Monday. I'm going to try to keep it up until they repeat my VBG on Wednesday to check my CO2 levels. I hope they go down after all this! If not, I'll be really sad and blue/ angry and red. Ha? Spending this much time on the bipap gives me a lot of time to sleep or think. It's awkward to do most anything else for too long on the biPap. I am typing while on it now, but the weird one-eye-at-a-time vision will get old by the end of this screen shot. I am getting more and more emotionally ready for the transplant, I think that's good. I've started to have some sort of dysfunctional thinking like, "Maybe if I stop swearing, I'll get my lungs tonight!" (bargaining, they call it). More than anything, I want the surgical part to be over so that I can stop worrying about it and thinking of new ways to meditate its reality out of my head and replace it with other visions.
Other than that, my Mom and I are getting along very well despite the fact that all of the days run into each other. We are fighting the boredom with all we have. Every day seems the same to us - exercise, meds, biPap, naps, food, television, an errand or two, an appointment or two . . . et cetera. It's getting boring.
I am still having a hard time doing a lot of things that are easy for people. Showering and the morning routine, for example, takes about an hour no matter how I try. Getting ready for bed, similarly, takes a long time. Getting ready to leave the house is a big to-do. Most things take a lot out of me. Even though I'm bored around here, my days are very full just getting the day done with. And it does take a lot out of me to have people in and out of here visiting me. I love to have so much support, but its getting difficult now that some of my friends and colleagues seem annoyed that I haven't seen them. I know it's been a long haul here (short, actually, compared to a lot of my CF bloggies and their journeys to transplant), but as the weeks go by it doesn't change the fact that
I. Am. Tired.
I feel like 90% of people understand that, and 10% of people are pestering to see me, hear from me, etc., more than I can deal with. I enjoy the emotional support, but the more I feel pressured by someone, the less likely I'm going to ever even call them back. It seems like a clue that they don't really get the enormity of what's going on around here. Heck, I haven't even seen my beloved T-Money in two weeks, I think! I actually got an email yesterday that said, "I've been driving by and it seems like you're always home, can't I come over?" and I wanted to be like,
"Are you a weird stalker or something? If I wanted you over, I'd invite you."
So, I want to say thank you to all of my friends and colleagues that are supportive and wonderful and let me take the lead on our communication, and who read the blog and keep in the loop and send an email or call but don't guilt me into calling back. To everyone else who feels like I'm ignoring them, I'm sorry, but you're sorta right. I'm not ignoring you because I don't love you. I'm ignoring you because I am tired. Every day.
Saturday, November 21, 2009
So things were sorta complicated this week, as I had two good sessions at Physical Therapy and was doing a good job of home exercise and meds and all that, as well.
Now, remember that when I was in the hospital in October, I ended up in the hospital because of hypercapnia, or high carbon dioxide levels, that were causing me to have severe headaches, delusional and illogical thinking, and a desire to sleep all the time (which compounded the problem). Eventually, this caused acute respiratory failure and I had to spend 5 days in the ICU reducing my CO2 levels using a BiPap machine, or assisted ventilation, to help me breathe more deeply and also clear my "used" air completely so that my CO2 levels would lower. I have continued to use the BiPap machine at home.
Okay- so then this Thursday, at Physical Therapy, I started to get the CO2 headache during exercise. The headache is a very specific, sudden, painful kind of headache that usually wakes patients up from sleep (like it did with me). It was striking me during exercise, which is odd. I went to the doctor that day, and my CO2 level had raised in one week from 63 to 86- not good, and most likely responsible for my headache. So oh no!
To see if this was a fluke, Dr U-Bird let me go home for a night and come back on Friday to see if my CO2 level went up or down overnight. Thankfully, it had gone down a bit to 75- good because the BiPap helped it go down, but bad because it showed that overall, my CO2 was increased from the week prior.
So there was a big debate and I was allowed to go home for the weekend with a change to my BiPap settings, to make them stronger, and with my CysticMommy to pay diligent attention to me. I will repeat the test of my CO2 level next week.
In the meantime, my oldest friend, S-Artee, is here visiting! I am supposed to stay on BiPap "as much as I can." Oh no! S-Artee is my very best friend for 29 long years, and I haven't seen her in at least 5 years. She is here to spend wonderful time with me!! We were, you know, planning to TALK during her trip. One problem when you're on the bipap, is that it is hard to talk through the mask. It is possible, but you have to talk really loud inside the mask, to be heard at all outside the mask. This is one reason that I burnt my voice out so badly in the ICU. I did not realize that I was yelling inside of the mask every time I tried to talk to someone, to project my voice through the airtight plastic.
This brings us to the weekend's theme: Fun on the BiPap. One fun thing you can do on the BiPap that involves little talking, is joke-telling.
Exhibit A: WARNING: This video contains cackling.
Exhibit B: WARNING: This video contains me wearing the BiPap which increases the pudginess of my face:) I am not this pudgy-faced in real life. :)
YAY!! Tell a lame joke with your best friend today!!
Love, Cystic Gal!
PS. I also have uploaded another video to count for yesterday's post. See below!
Tuesday, November 17, 2009
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!!
Saturday, November 14, 2009
Sunday, November 8, 2009
Top Ten Quotes of Cystic Mommy
When Caring for Cystic Gal
1. "Okay- your laundry is out. of. control." Let's face it, you haven't done laundry in a long long time. Parents have a healthy obsession with laundry and will make short work of your stinky pile.
2. "Mmm. Doesn't this look gooood?" It's much easier to pack on the pounds if someone else is setting food down in front of you and pretending it is the best thing ever.
3. "We can watch whatever, I'm not really paying attention." Lonely no more! When you're ill, you spend a lot of time at home. What TIVO does not provide is a television companion! Watching hours of television does not seem nearly as pathetic when you can chalk it up to quality time with mom or dad.
4. "Okay where does this go? . . . Okay, well, I'm gonna put it over here instead." Parents have a unique ability to tidy things that you thought were just fine the way they were. As long as you keep an eye on mom or dad, most of their suggestions are improvements.
5. "Time to get up, do you want me to bring you some coffee . . . yum . . . coffee!" When you're sick, you have to get out of bed early to do your treatments. Parents have a unique ability to naturally wake up early and harass you into taking care of yourself complete with force feeding your breakfast foods. Thank goodness.
6. "You know what would be good? A nice hot bath!" Parents, moms particularly, have a wonderful ability to pick out comforting activities that will make you feel better when you are too tired to think of them and just want to lay around being miserable.
7. "You'll feel a lot better if you do the treadmill first." Parents are great at forcing you to exercise and watching you to make sure you don't, like, pass out or anything.
8. "We'll get it at the CVS, man!" Moms loooove the CVS. At least, Cystic Mommy does. There is nothing my Mom does not seek to purchase at the CVS. She has developed this ability following years of picking up meds for me and Cystic Lady, and learning the ins-and-outs of exploring the CVS for all her needs to save a trip anywhere else.
9. "Let me just take out the garbage first." Parents are obsessed with taking out the garbage. They take out the garbage before its full, at just any old time for the pure parental fun. This is great for CFers who need to fear the garbage germs.
10. "I love you." The best reason to let a parent take care of you, is because your parents love you, and you love them. Aww!
Thursday, November 5, 2009
So I have this problem. Every time that I deal with romance on this blog, all of my exes think I'm writing about them. Which is weeeird because a) I have a very detailed disclaimer dealing with this issue and b) I have written very little about romance on this blog and even put CysticLady to the task of covering romance during her guest posts (also because she is a romance-maniac right now). I got this email the other day that accused me of being all angry at one of my exes, which is weird, because, you know, I've had bigger fish to fry these last six months, you know? Not once sitting down in the ICU trying to figure out how to get from one end of the bed to the other without my oxygen dropping to 70, did I think, "Oh I am so angry at that man!", nor when being checked for hypoxia and struggling to pick out the commonalities between an apple and an orange did I say, "Now wait, let me tell you about [Jerkface]." And yet, oy vay, I get accused of man-anger when all have is lung-anger since August 11th.
And I have this other problem. A lot of my exes who are not particularly in my life anymore are writing to me and saying they are praying for me. Fine, pray away. I like praying. I do it every day. But it makes me wonder, if we cannot be there to support people in the real world, is it appropriate to try to affect them in the spiritual world? Perhaps, but I'm not sure. I also think this conundrum speaks to a great problem I have always wondered about with CF, which is the pressure that I have always felt to stay in contact with people only because they are curious about whether or not I am still alive. I know that sounds crass, but it's true. Perhaps other people have experienced this passing thought. For me, this means that I invited [Jerkface] to make peace with me before my surgery and he basically said, "nah, but I'm prayin' for ya," which is, you know, juuuuuust like making peace. ?
And then the other problem, the ultimate ex-boyfriend problem - that exes never believe that their exes can possibly be happy without them. I don't think that [Jerkface] can possibly be happy without me, mostly because he used to tell me that all the time. [Jerkface], in turn, cannot possibly believe that I have been fabulously happy, besides this whole my-lungs-are-dieing thing, mostly because I used to tell him that all the time. What fools we both are, as I am most definitely happier now than when I was all involved with [Jerkface]. Still, it takes a godly concentration to hold my fingers back from the computer where he writes, "I hope you're happy," and I want to write, "I'm fucking happy, I hope you're fucking happy too, jerkface!" If anything, these last six months have shown me that romantic love is not the highest thing on my priority list at all.
Watching things fall out of my life as I got sicker, and hoping for them to drop back in once I get well, I realize that romance is lower on my priority list than I ever expected.
Wednesday, November 4, 2009
I write this with a heavy heart. Heavier still because Lauren was my age, and as I read through her recent posts, she was was going through some of the same challenges that I have faced in these past few months while trying to get on the list. All of our prayers to Lauren's family and peace up to her in heaven. Now Lauren can breathe freely.
If you're in the hospital and feelin' sorta frumpy, try getting a haircut! I've been here for a month, and before that, I had only been out a few weeks! I feel like I've been here since August and my hair was suffering! Until today, I got a hairstylist from a shop in the hospital's neighborhood to come to my room and spruce up my 'do:
Word on the street is I might get out of the hospital tomorrow! YAY! I will start a pulmonary rehab program next week, and spend some much needed time at home with my cats and my Mom while wait to get the call to come back in for transplant surgery!! I hope it comes soon!
Tuesday, November 3, 2009
CONGRATULATIONS TO TEAM CYSTIC GAL!
YOU RAISED THE MOST MONEY
IN THE "UNLEASH YOUR STORY" EVENT
FOR THE CYSTIC FIBROSIS FOUNDATION!
Thank you to all those who donated, on the team and individually! You are awesome, and YOU helped to cure Cystic Fibrosis, one dollar at a time!
Use tonight's bloggy time to explore other areas of the blog such as labels, tweets, and the archive :)
Monday, November 2, 2009
What I know now about my point of view the weekend prior to going into the hospital is that I was already extremely hypoxic. So in addition to the lapses of logic that come along with feeling extremely ill, and not being able to breathe, my thoughts were actually altered. I remember sitting around my house in my pajams the entire time, and sleeping a lot, which must have worsened my hypoxia. Looking back, my mother says that I was already being sort of out of character over the phone. By Sunday, I was practicing active cycle breathing to keep my oxygen saturation around 92 on 5L of oxygen, and I knew Dr. U-bird was going to put me in the hospital.
This is where my memories start to get all messed up. Much of the rest of the week doesn't matter in relation to the point I want to make tonight - but I will say this -a lot of bad things happened that first week in the hospital and mostly because I was not my usual diligent self, overlooking my own care because I was all crazy hypoxic. Also, my own doctor was out of town, which bred a series of medical personnel self-righteous indulgences that I will write about at greater length some future day. So, yadda yadda yadda, a bunch of shit went down and I was just getting sicker.
[Sidenote to CFer readers: only on CF blog can you "yadda yadda yadda some scary medical stuff went down" in order to get to your point. I am reminded of that episode of Seinfeld, "You yadda yadda'd the sex?" "I yadda yadda'd the sex." I have, above, yadda yadda'd what is usually the most interesting part of the typical hospital story.]
A lot of bad things happened and by the end of the week, I was laying fetal in my hospital bed, which was propped up almost to sitting, and trying desperately to breathe: in . . . 1 . . . out . . . 1 . . . in . . . 2 . . . out . . . 2, until I reached 100. Then I would start again. I stayed up all night this way, counting my breath and occasionally stopping to see if my oxygen would stay stable. It didn't. I don't know, with the chain of events, if I had already seen a doctor, or I was afraid to call for the doctor, if I had tried the BiPap, or not. I only remember laying in the bed, counting my breaths, forcing them in and out.
This was when I realized, this is part of dieing. This is what it feels like. Before, I was ill. And now, I am dieing.
Around four in the morning, I started sending texts that said, "I really need someone here now. Someone should come here now," and some others that I don't really remember. I texted them to my parents who were planning to arrive only 4 days later as it was. I didn't want to be alone for four more days. All of a sudden.
At some point in the night, I was laying, counting my breaths on my fingers and trying to read with the book laying next to me. I was re-reading a book I have referenced here before called, "Sick Girl Speaks!" by Tiffany Christensen. On her list, "Top Ten Opportunities of Illness," she writes, "9. Going to an internal place that is so deep pain cannot find you there." In my state, I found this phrase very meaningful, and I decided to meditate on it instead of counting my breaths. I started to breathe to, "(Inhale) Take me to a place inside (Exhale) Where pain can never find me."
I wanted to find a place so deep and quiet inside myself that my tired lungs and breathing muscles could continue to do my breathing, while my mind and the rest of my exhausted body could get some rest. I started to also think about everything that lies ahead of me, not even knowing of the immediate threat of respiratory failure.
I wanted to find a place inside where pain would never find me. By the morning, I found it.
Sunday, November 1, 2009
I bet you all wonder what CysticGal and CysticLady
do with all their evening time . . .
Well, here it is! Glamorous!
Friday, October 30, 2009
Also, want to read some funny current thoughts by CG and often to CysticLady (my sister), read the tweets to the right!
The thing I hate the most about being in the hospital is all the excessive touching. I don't mean the doctors listening to your lungs. I don't mean the blood draws. I don't even mean the surgeries. I mean the other types of touching that you are subjecting to and cannot get out of without literally batting someone away or being a total biotch.
There is this one respiratory therapist that is actually quite good at his/her job. I'll call him/her Respie. Respie is jovial, friendly, and quiet when I don't want to talk, but happy to converse if I'm for it, while we PT. S/he works around my snarky approach to the hospital scheduling. S/he is one of the few people I have given "it's okay to wake me up" privileges. I like Respie's PT so much that s/he can even come and wake me up if we have agreed to PT, if I put the "PATIENT IS SLEEPING, PLEASE SEE THE NURSE (subtext: or I'll kill you)" sign on the door. But, here's the thing. When Respie gets distracted, s/he leans a huge belly onto my back. It schkeevs me out every time. Schkeev!
When doctors are listening to my chest - which is annoying enough, they often place their other hand on my shoulder or some other random part of my body. Why? Back the fuck up. Schkeev!
When I am having a coughing fit, random people that are in the room cleaning it, or changing my portable oxygen tank, or delivering food, will attempt to touch me. Usually, I use my CysticGal guns to POW! Lay them out flat! Just kidding. I make them talk to the hand. I do not want their schkeevy-gloved hand on my CysticBack. Do I really look like I need help coughing? Unless it's Respie or CysticMommy, Get the fuck back.
Every 4 hours a random woman will take my vital signs. Here are the things that are true about this woman, even though she is always a different woman: She does not speak English. She either yells when she talks or refuses to speak. She wears white tights. Her job is to take my pulse, my temperature, and my oxygen saturation, and to write down the oxygen amount I am using. Here is what is true of her a good 50% of the time. She does not know what any part of "that is too tight" or "I can hold the thermometer, you're stabbing under my tongue" means. She opens the door to my room 3 times for every 1 time she comes in, staring at me. She does not, in fact, know how to do two things: take blood pressure, or read an oxygen meter thingie on the wall (the amount of oxygen I'm using). This may sound silly, but when someone is wrapping a blood pressure cuff around you and not pumping it up, what draws them to the conclusion "100/70"? which btw, is NOT MY BLOOD PRESSURE. She is not taking my blood pressure, she is often faking my blood pressure. I digress. The worst, sckievest part: while this woman fakes my blood pressure, she always places my hand on the side of her hip, so that the hand of the arm she is faking my blood pressure on, is caught, trapped, captured between her pudgy hip and her elbow, while she uses the rest of my arm and her arm to fake my blood pressure. The process Schkeevs me for unexplained, CysticGalComplainer reasons. Schkeev!
Three weeks in this place. My good mood is fading.
Thursday, October 29, 2009
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.
Monday, October 26, 2009
I'm going to begin with a little history on myself, from the weeks prior to my lung transplant in 2003. Three weeks prior to my transplant I went into respiratory failure. Now, this can happen for a few reasons. I had Type 2 respiratory failure which is characterized by both high carbon dioxide levels and low oxygen levels (and low pH, but I won't get into that). This was hands down the scariest time of my life, not only because it was nearly impossible to breath, but also because I was told that at that point I was too sick to receive a lung transplant.
The most simple explanation I know of is, that during normal respiration or breathing, your brain makes you exhale in order to rid itself of carbon dioxide. Carbon dioxide drives respiration. When you go into respiratory failure, your brain starts doing this backwards, and thinks it needs to breath in when oxygen is low. The result is that you breath in more, and exhale less, your carbon dioxide continues to rise, and since your brain thinks you need to only breath in more, it keeps getting worse and worse until nothing works.
Of all of the people I've met, the people who have been in respiratory failure are the most adamant about keeping their oxygen saturation at a safe but low level, like between 89-92. This is because when your is given supplemental oxygen and you have lung obstruction, then higher saturation levels can lead to decreased ability to remove your carbon dioxide by exhaling. This is very difficult because your instinct when you cannot breath is to turn your oxygen up. And in fact, sometimes that may be a good idea. Everyone should have a lot of guidance when on supplemental oxygen.
Back to CysticGal. Last Sunday night CysticGal was having a horrible time breathing. She thought that her BiPAP wasn't working because she continued to feel out of breath despite wearing it, and wearing it made her uncomfortable, so she decided not to wear it. What she didn't know and nobody explained to her, is that she was going to feel out of breath anyway, and that it was really important to wear the BiPAP. CysticGal was unable to sleep that night, and just huddled in her bed being out of breath. I told her tonight that her inability to sleep was her body protecting her. If she would have slept, she would have woken up completely unable to breath, or, not woken up. I know about this body protection feature because my friend Jana also must be on BiPAP when she sleeps, and her body will also not let her fall asleep without it. It is really amazing sometimes what our bodies can do to protect us.
On Monday CysticGal was out of sorts, and overly emotional, and she has very few memories of those days. I received a call from a friend that was visiting, and CysticGal spoke to me incoherantly. Then her friend got on the phone and told me that the BiPAP wasn't working. I asked why she was saying it wasn't working, and realized that she made that decision based on still feeling out of breath, I made it very clear that CysticGal needed to put on the BiPAP and keep it on, that it is good for her. I told her that she was going to be out of breath and that she needed to work really hard to breath.
Later that evening, CysticGal was in critical condition and they decided to move her to ICU and said she could possibly be placed on a ventilator. This was very scary for all of us!
CysticMommy was already with CysticGal, and CysticDad flew there the next day. CysticGal stayed in ICU until Friday night and then was moved to a floor for Pulmonary and Transplant services. She is getting a bit stronger each day. She is officially listed for lung transplant as of Thursday.
Thanks again for all of the love coming our way.
Sunday, October 25, 2009
I was having such difficulty deciding how to communicate with you again as everything unfolded over the past week and a half. I decided to make my Newsflash! to get the word out there, and then did not know what to say. (Not something I usually experience;)
All I can say, so far, is this: When I got so sick two weeks ago, I spent some time mentally preparing. I thought I was prepared to come into the hospital, and to get better so that I could continue my journey to transplant. my transplant if I had to, to stay well. I never thought that things would get so much worse before my transplant. I thought my health would get a little better before the transplant.
Now, my biggest hope is that my health stays just the same. I will look at every day of slight improvement or plateau as a victory. I am no longer demanding leaps and bounds, they could lead to setback. I am demanding one day at a time of same or a little bit more manageable.
(More to come in later posts...)
There is a long story to tell and many lessons learned and many doorways opened . . . opening still.
Tonight, in the middle of the night, settling into wear my BiPap over night, and feeling unsettled, confused, enlightened and downtrodden about how far down the rabbit hole I went, and how hard it was to come out. Scared that I could not do it again . . .
I had the pleasure of hearing this song and was suddenly clapping and swaying on my bed, enjoying the rhythm and lyrics of the song and how closely the words echoed with my journey last week. Perhaps these words will help explain while I am too tired to write all the other ones. I invite T-Money, CysticDad, CysticMom, or even J-Proffie to offer submission. CysticLady is charged with filling in the gaps.
I don't want to be dramatic, but I believe that this past week had the potential to be the 5 days that would save my life, or take it. That does sound dramatic, but I believe it to be true right now. I want to remember the skills I used so that I can use them again and waste less time finding them.
ANYHOW! The song:
Moment Of Surrender
At the moment of surrender
I folded to my knees
I did not notice the passers-by
And they did not notice me
I’ve been in every black hole
At the altar of the dark star
My body’s now a begging bowl
That’s begging to get back, begging to get back
To my heart
To the rhythm of my soul
To the rhythm of my unconsciousness
To the rhythm that yearns
To be released from control
I was punching in the numbers at the ATM machine
I could see in the reflection
A face staring back at me
At the moment of surrender
Of vision over visibility
I did not notice the passers-by
And they did not notice me
I was speeding on the subway
Through the stations of the cross
Every eye looking every other way
Counting down ’til the pain would stop
At the moment of surrender
Of vision over visibility
I did not notice the passers-by
And they did not notice me
sorry to borrow some song lyrics, but there they are!
Goodnight, I have to dance and cradle myself to sleep, I wish the same to you.
Saturday, October 24, 2009
Second, contain your cheers, CGers! I am on the transplant list!! Yahoo! I cannot wait to tell you all about it in my next post.
Monday, October 19, 2009
Initially I think we all had some panic, but I think we are all better now. CysticMommy will spend the night with her tonight. CysticDad already had a flight to Boston tomorrow.
More updates tomorrow. Thank you all for your support and prayers for our little CysticGal.
Saturday, October 17, 2009
I have had a long day and am waiting on the nurse to start my evening IV, so must stay up 30 more minutes. Blah.
Today I thought of writing the blog in all sorts of ways:
Cynical CG Blog: What did you do today, CG? Try to breath.
Silly CG Blog: What did you do today, CG? Spend time with my mommy.
Cranky CG Blog: What did you do today? Be annoyed at the P.A. who [omitted personal info that would make him/her feel bad]- and who is also generally blah.
Medical Jargon CG: . . .
Vampires in general?
and would you believe it... Julie Andrews?
While entertaining for a bit, this turned a 2 minute night-time errand into a 20 minute song and dance.
This is just the sort of thing that a CG does not like about the hospital. When I wanna go to sleep, some 50 year old guy wants to tell me about his misspent career choices and how-he-coulda-been-a' . . . Elvis impersonator . . ? His misspent career moves remain unclear.
In other news, related to me . . . :)
Today was better than yesterday. The BiPap certainly helped the first half of my day. I was more rested and I believe my lungs were "more open" than usual. Then day went arie...ary...ariye...a-rye...arrie ? HOW THE HECK DO YOU SPELL THAT? I just tried 5 ways.
The day went 'OUT OF WACK' when I tried a hypertonic saline neb against my better judgement and it nearly killed me. Just when I get to goin-with-the-flow around here, something bites me in the ass. Today it was that neb.
After that, I was mostly exhausted most of the day.
But still, better than yesterday. My CysticMommy arrived today and we took a walk around the hospital, and I did evening yoga (quite poorly, though...) tonight.
Now, imapenem IV and to bed.
Thank you all for your suppport. Love, CG
Thursday, October 15, 2009
This morning, CysticGal had a heart catheterization, as part of her transplant workup. I think she did well during the procedure. Afterward you have to lay down still for eight hours or so in order to let the wound heal and reduce the risk of blood clots. She was pretty sleepy all day and also wore the BiPAP. We are hoping that the CO2 level comes down.
We are very thankful for T^Money for going to the hospital and being there when CysticGal woke up. She also kept her family up to date. What a super friend!
When CysticGal first entered the hospital on Monday, we anticipated that she would be there a few days, get hydrated and get back out. Now that the CO2 retention has reared his ugly head, we don't really know how long she will be locked up.
Please send warm and fuzzy thoughts the way of CysticGal!
Tuesday, October 13, 2009
Let me thank you for the nice comments on my first guest blog on Cystic Gal. I am also grateful to be able to have a forum to share these experiences.
As such, I thought I'd write a follow-up. There is another side to this story. I will attempt to tell my version of it without using too many cliche's, but it may be hard because love is the most written and talked about topic in the history of the world.
Love is a wonderful part of life. I think I can go so far as to say, it is the reason for life. It is indeed a real shame to go through such lengths as a lung transplant to continue living, to then deny yourself the chance for love. The same way that I weighed the risks vs. rewards of a lung transplant, is the way that I have to weigh the risks vs. rewards of love.
I have said before that I'd do everything again, the whole year of dying, the surgery, the recovery, for just one of those days after transplant that I didn't have to think about breathing. Not even a special day, just a day when I get up, go about the day, perhaps dart to my car in a rain storm. Then to sit at the end of the day and realize that not once I was fearful of being out of breath, of having to stop and check my sats, or bend over in a coughing fit. I chose to have a lung transplant with the full knowledge that it would not be a cure that lasts forever. I chose it knowing that everyday would not be perfect, that in fact, some days would be awful. I've had those awful days, months, even. Still, I am happy.
What I didn't share in my post last night was that I have a new boyfriend, a brand new shiny one. With a lot of apprehension, I forwarded last night's post to him. He called in the early morning, and, he's in. I was speechless. I was scared. A few minutes later, I was relieved. I believe him. He is wonderful.
It may not last forever, and everyday will not be perfect, but I'm going for it.
In other news, CysticGal is doing better today. She is a bit stoned due to a huge increase in her Marinol. She has her first ABG ever tomorrow morning, so wish her luck.
Monday, October 12, 2009
A bit of history:
I was married once. We dated four years prior to our marriage and were married for six. Around year four of the marriage was my lung transplant. Before we were married I felt I had properly vetted the husband for many types of health issues. He'd seen the gross hemoptysis, spent lots of nights in the hospital, changed a port needle, put the nebbies together. Still, things fell apart in a complete and unsalvageable way in the two year period consisting of the year before transplant where I was dying all year, and the year after transplant where I was recovering all year.
I think all the time really, what was it all about? It was no secret I was sick, it was no secret that I'd eventually need a lung transplant. I know for sure that the transplant was not the only reason for the end of the relationship, and for all I know it would be over now if I didn't have CF, or I didn't need a transplant. Still, I always felt the need to isolate the final straw. What I think it was, six years after transplant, four years after divorce, is that although my husband could deal with the illness, the hospital, the doctors, the coughing, the hours of therapies... really like a pro; that when it came time for him to actually give something up, change military bases to one he didn't like, give up being deployed, slow his career down - that it made him so mad, and in turn it made ME so mad.
So, what do I do with this information? Can I trust enough to ever have another relationship? I built up these walls, stay out, you don't want to come 'round here.
Disclaimer: I have Cystic Fibrosis, I had a lung transplant almost six years ago. In the next four years I will probably need another one, or I might die of something else. If I need another one I might not want one, but I might and either way it is up to me and me alone. I will probably also need a kidney transplant one day, if I live long enough. If we happen to procure some babies using one of the various methods babies come around, i.e., stork, adoption, emergency, then you will probably raise said baby by yourself one day. And oh yeah, the biggest one, I am a survivor, and as such, I will pick me over you every day of the week and twice on Sunday.
So, do you still want to date me? I'm so cute.
Question one: When do you tell them, in a way that makes the future relationship understand, buddy, this is serious?
Question two: Once you tell them, and they have the moment where they think and say, "what kind of asshole would break up with someone because of their health?" And you look over at them and think, "you would, and so would he, and him, and that one, and her too." What now?
Because let's face it, when we think, "in sickness and in health", we assume that means a lot of health and maybe a little sickness, not mostly sickness. And when we say "until death do us part", we mean when we're both really old, not in the next decade.
Personally, I have this idea that if the potential relationship is given the disclosure early, then they can walk away, no harm no foul, mitigate the damages, lessen the hurt feelings. But, it never works that way for me. Instead, it is the acceptance of the disclosure, and me proceeding like a green light GO. Until the day that we both realize, yeah, he's that asshole we both denied he is.
I think that I need a yellow light, proceed with caution.
post post post postable
I am back in the hospital after a weekend of feeling very short of breath
very short of breath indeed more short of breath than I ever have felt
in my whole life long
over and over again
on the couch short of breath collapsing
on the bed short of breath laying
on the kitchen floor sitting down time for a rest
in the bathroom leaning over the sink just to brush the teeth I am short short short of breath which really means
I am gasping
trying to catch your breath when you have no room left to breath is just sort of
dot dot dot
useless as a metaphor.
you cannot catch something that doesn't exist is what I'm trying to say
how can you catch your breath
catch air out of the air
and put it into your lungs
where there is no room for it anyway
that's like trying to catch an elephant in your driveway and fit it into the trunk of your car
the trunk of an elephant's trunk wouldn't fit in your trunk.
not with all that junk.
i'll leave you with that bizarre thought for tonight.
i am in the hospital again but there is no need to worry. i just needed more oxygen, and it seems, some hydration, and of course, some IV antibiotics, and but of course,
i miss my cats.
look forward to the first post by CLady, perhaps tonight!!
Sunday, October 11, 2009
25% of CG readers are looking for info on Florence Nightingale Syndrome!! HAHAHAAHHAHA! Even WEIRDER, some one is just looking for "CLOWNS CYSTIC FIBROSIS." Ironically, someone is looking for "cystic lady blog", but little known fact: Cystic Lady is terrified of CLOWNS! And there she is, listed right below them.
Coincidence? I think not!
|25.00%||florence nightingale syndrome|
|2||8.33%||CLOWNS CYSTIC FIBROSIS|
|Page Loads||Unique Visitors||First Time Visitors||Returning Visitors|
|Year||Page Loads||Unique Visitors||First Time Visitors||Returning Visitors|
Weekly Stats Report: Oct 5 - Oct 11 2009
Project: Cystic Gal
|First Time Visitors||38||34||40||19||29||23||32||215||31|