Top Ten Reasons The Weekend Rocked My Socks
in no particular order.
1. Surprise visit from one of my best buddies in the whole wide world!
2. Re-watching a wonderful though dark dark movie, followed by great discussion.
3. "Bethenny Getting Married" is the best show on t.v. I made my male buddy watch this show and was hoping for a funnier sample episode, as though it was physically possible to get him watching this show of his own free will. Ah well, it wasn't funny, but he endured THE wedding episode and I thoroughly enjoyed it. He, at the very minimum, pretended to enjoy it, and this was satisfactory for all parties. Side note: I had to watch that Lebron James shit-show DECISION and nearly cried over those poor kids at the Boys and Girls Club who were totally played out by that a-hole on live tv. Who keeps kids out on a weeknight to tell them bad news and make them cry? Poor, poor taste. And Lebron, you're not all that. I didn't even know you're name before this weekend. Bethenny Frankel would never have pulled a stunt so cruel. 2 points for Bethenny. I hope those kids cried or said mean things to "the King" for his a-holiness.
Back to the list . . . of Top Ten Reasons This Weekend Rocked My Socks . . .
4. Thai. Food. With. Leftovers.
5. Peapod delivery prior to my pal's arrival provided the peace that only a full fridge of pudding cups, avocados, cheese and cheese-related products, and an entire corner of my kitchen I call "the beverage center" full of all sorts of hydration for my salty bod- made for a wonderful tumyurful time.
6. Have I yet mentioned NY Deli Pizza in my neighborhood that is so very very very college-style cheap, and yet so very very very Boston-style yummy Italian food? 'nuf said.
7. Houseguests + Open Refusal to actually cook for them = Sweet Relief.
8. Helped work on the draft of play that woke up my director brain and my playwright brain.
9. Took some advice from CFFatBoy and explored a new webhosting service, and now think about moving my "real" yet unlaunched website over to it! Oh yeah, and got my second official web client!
10. Seeing the people you love : Best ever.
11. BONUS: Managed to do all my meds, take my bipap naps, and get plenty of sleepy time sleep.
Oh no wait. One day, I forgot my bipap nap but that was because of the uninteresting transplant appointment I had to attend all afternoon, and also forgot, on the same day, to drink my afternoon cup of coffee- HEADACHE CITY. Thank goodness for my bipap. To bed for me! Both then, and now!
12. DOUBLE BONUS SHOUT-OUT: Extra doting by B-Kitty who has taken a new dislike to visitors. GTFO, she meowed. She spent today reclaiming all "infected" furniture and generally meowing in my face. Oh wait, the second part of that is not really news.
13. NEWSINESS: My shirts arrived!!!! Or shall I say, YOUR shirts arrived! The luck keeps coming. Every day, a lucky thing so far.
g'night! party hard. sleep it off.
cg
Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts
Sunday, July 11, 2010
Tuesday, July 6, 2010
"It's Gettin' Hot In Here, so what?, So Take Off All Your Clothes"
Bet that title got your attention. Sorry, no naked shots today. But this one of my dear B-Kitty^ and her new companion, fresh out my cleaned-out closet that was full of drama-teacher-related-goodies. She seems to have made friends with little dog dog there, and dragged him out of my bedroom and into the kitchen to lay on the cold linoleum floor. I am not sure what the status of their relationship is, as she told me that they are "keepin' it loose," so- you know.
A special apology to UnknownFox as I think he was hoping to have some sort of pet-of-a-CFer-online-affair with B-Kitty. She'll hollah back when she's ready.
On to the real subject of this blog.... ME.
It's hotter than Beezus and Ramona out here in New England, and I, like a dumbass, did not schedule my friendly handyMan to put in my A/C unitS until tomorrow a.m. STUPPIE STUPPIE RA-TA-TOOYIE. ooh well. I'll survive. I made a video today for my docu-diary about how everyone asks if the heat bothers me, if allergies bother me, if smog bothers me, or humidity - I think at this point- my breathing sucks so hard that you know- nothing really bothers me per se, because it even the best air blows. Ha ha, get it- the air blows?!
I offer you this hilarious and informative video regarding the 4th of July-y. Small brief cameo by one of my most famous friends, JO^."Party like it's your last,"
CG
Thursday, July 1, 2010
Ten Ways I Celebrated Life This Week
Ten Ways to Celebrate Life
1. Have an impromptu party. Wake up in the morning and decide to invite all your besties over. See who shows up! DO NOT CLEAN THE HOUSE. No one cares.
2. Put on a crazy song or 5 (as many as it takes to warm up to the idea) and dance around the house while scantily clad, Risky Business-style.
3. Put on some loud music and go for a drive with all the windows open, and try to sing at the top of your lungs. If you're on 02, enjoy getting followed by a police man who perhaps thinks you're some kind of thug, and then pulls up next to you and looks confused. Thug life y'all.
4. Wear an outfit that you are saving or usually save for something special, to go do something unspecial. You'll feel so very special.
5. Tell everyone YOU HAVE A GREAT DAY! and really mean it. The Southerners have this one right- people really appreciate it, and some of them actually start turning the wheels, "Maybe I will have a good day!"
6. Spend some very special time with your pet. This might involve McDonald's French Fries, and a porch, AND a porch-party.
7. Instant message your old homies and see what's up with them. You would not BELIEVE what is going on with people!
8. Take stupid pictures of yourself and share them with people. People really appreciate possessing stupid pictures of their friends.Think of the last time you got a stupid picture of a friend. Did you delete, ever?
9. Do something you've always wanted to do, that you would get no reward for. Volunteer somewhere, do something extra, do something that's a crazy hassle. Do a good deed, already, FFS!
10. Count your blessings and know that if you have even one, you should realize that you're one of the luckiest people on earth. Especially if number one is your mommy.
BONUS: Eat something really nummy. Twice.
DOUBLE SPECIAL SHOUT-OUT BONUS: Call someone you love so very much, who you feel disconnected from, and say, "hey I feel disconnected, and I want to fix that right very now," even if it's scary. FULL DISCLOSURE: I was on the receiving end of this one :)
--
~CG
Sunday, June 13, 2010
You can't take it with you :: The SouthtownStar :: Guest Columnists
"Cystic Gal" is more famous every day! Kathleen Rooney, famed and sometimes infamous author, publisher, and my personal hometown homie, wrote this wonderful article about . . . ME, and her experience visiting me in Boston a few weeks ago. The article is focused on promoting organ donation and exploring some of the practical matters in the pre-transplant process. I hope this article encourages more people to sign up as organ donors, and to encourage their family to do the same.
An update on general news, I am feeling much better than yesterday. Please click the link below to see the article in The Southtown Star, by the Chicago Sun Times.
cg
You can't take it with you :: The SouthtownStar :: Guest Columnists
Looking for a way to support your readership of "Cystic Gal," as well as my transplant fund? Click HERE.
Looking for the Jill Zarin article that was originally posted for Saturday, June 12? Click HERE.
An update on general news, I am feeling much better than yesterday. Please click the link below to see the article in The Southtown Star, by the Chicago Sun Times.
cg
You can't take it with you :: The SouthtownStar :: Guest Columnists
*****************************
First visit to the blog? Learn about me and the blog by clicking HERE. Looking for a way to support your readership of "Cystic Gal," as well as my transplant fund? Click HERE.
Looking for the Jill Zarin article that was originally posted for Saturday, June 12? Click HERE.
Sunday, May 16, 2010
Tonight, I am too tired to tell you about STEP 4
This is an old picture (2007?), but an accurate facial expression of how I feel about seein' my buddies!Actually, I was on the way to teach a class called "non dance movement for the ballet student."
I love tellin' people about that crazy class.
Boy, I love my line of work.
I digress . . .
STEP FOUR! in the Get Back to Yourself Plan of 2010:
Okay not really.
I had a very busy weekend which included, having friends for dinner Thursday night at my house (and I cooked:) for H-Mama, J-Baby and J-Prof
Friend over for a drink of wine on the porch on Friday (T-Money)
Dinner "date" on Saturday. (C-Dad)
Trip across town to see H-Mama and J-Prof tonight.
One social thing per day. And I'm tired!
But, I had a lot of fun this weekend, and boy did I need it!
In planning next weekend, I wrote this in an email to my friend K-?? some pseudonym I cannot recall:
"ok last thing then really to bed,
i think it's hilarious that now 2 events in one weekend = "socializing my ass off." can one "socialize" (a rather regal term) one's "ass off?" (how low brow!) My life is such a comic disaster right now. Why can't this be a sit com and not a potential tragedy?
GOODNIGHT!"
and thus, Goodnight!
cg
Monday, January 4, 2010
The Best of UnBlog: First Edition
Cystic Gal (CG) UnBlog: CGUnBlog
I will be using UnBlog to write more veraciously everyday, so that I can worry about editing later without clogging up the CG blog. Read other reasons below in . . .THE BEST OF UnBLOG: First Edition, where I show a melding of the discussions (me, discussing with me . . .) that came up on UnBlog recently.
Why UnBlog?
One reason is that I have a lot of younger readers of the CG, both my irl students (post high school) and young CFers. I started to feel like there are some things I don't want to say on the CG if I know my youngies are gonna read them. For example, the holidays STRESSED MY SHIT OUT and I could not write about it a single bit because it would've offended the shiiiit out of every human I know. Though most humans I know were stressed out at the holidays too. It is just no fun to be waiting on lungs and singing the Christmas carols. I'll tell you where to put the yule log. hee hee.
That post coming soon, perhaps tomorrow.
The other reason for the unblog is that I want some things to remain private from my coworkers and family, and to just exist as writing projects without muddying the CG blog which is taking on more of a proactive approach to the CF bloggy community. I've started to get creepy comments on my blog from people that the famous CF Husband (not mine) would call "the trolls," who are either CF parents that don't want to read negative things AT ALL (and apparently someone is tying them down and forcing them to read my blog), or religious extremists who don't enjoy any of my spiritual discussions, or whatever, so I want to be able to put stuff up without hearing from "the trolls," while still leaving CG open to comments and etc.
I also really want to commit to posting every day if I possibly can, on either CG or CGUnBlog, so that I can hold on the memories of my upcoming transplant. I am really sad that I don't have daily posts from the three weeks I was approaching, in, and recovering from respiratory failure. I mean, of course the week in ICU I could not have written the posts, but I could have done it the week prior or the week after, and then I would have had a clearer memory now of the way my mind was working THEN.
The Gives and Gets of Pre-Transplant
My friend T-Money^ sent me a quote that I used on facebook that says something like, "Don't think of organ donation as giving up part of your self to keep a total stranger alive, think of it as a total stranger giving up almost all of them self to keep a part of you alive."
This got me thinking about what I am giving up, what all recipients give up in the pre-transplant process that could come just before the dying process, and for many of us, leads to death.
I have been thinking, also, about what transplant recipients have to gain- and what many do. From the seemingly small ability to hold one's breath for a long time, to returning to sports that many abandon in childhood or adolescence, to having the time and energy to reach new heights in our careers, hobbies, friendships, and romances.
Because you know I love a tragedy, I want to first talk about what I believe I have given up since that moment when Dr. U-Bird^ said, "Why don't we make the call right now? Get your process started now?" knowing that if I left clinic and thought about it for another month it could mean a big difference in my care. That moment was just in August - only 4 months ago, and here I am, 2 1/2 months on The List.
What have I given up so far?
My job. I can't go so far as to say that I have given up my career but I most certainly have given up my job for a time. I miss my work dearly. I never realized how much of my personality is balanced by my work, how much my psychology is based around a sense of accomplishment (which now I can't seem to muster), how much my mind depends on busy-ness. I am asking myself these questions today:
What do I do when I have nothing to do?
What do I wear when I have nothing to dress "for"?
What do I think about when I have nothing to think about?
What do I talk about when there is no personal news to discuss?
I think that I always romanticized the past parts of my life that were dedicated to my illness. Times in the past where I was so sick that I couldn't go out of the house, I was always well enough to be reading something, or writing something. Also, at those times I was always in grad school, college or high school. I was always able to fill my time and expend my energy with intellectual goings on. At this time of my life, as I prepare for transplant, all of my energies must be directed on taking care of my Self, and the amount of energy I have to give to anything else is very little. I have had trouble even keeping up with my blog, emails and personal correspondence.
In the back of my mind, I thought I would be able to spend this time writing a great play or novel, reading all the books I never had time to read before, or watching all the movies that I should have seen. I even had visions of meditating for hours a day or reading the Bible front to back. I was overly attached to this romantic ideal of my spiritual/intellectual expansion while my physical abilities are limited. Now, part of me is greatly disappointed that "this" is all there is to do (sleeping, eating, medicines, pt, cpt, hot bath, repeat), and that "this" is really quite enough, sometimes too much, for a day.
So what have I given up? My job, my career (temporarily), but also the parts of my self-esteem that are attached to my intellect or academic pursuits. With that, of course, I will gain some understanding of other aspects of my Self- I am however, not on to that enlightenment yet.
What have I give up for transplant?
The way I look. I am very unhappy with how I look right now, and even less happy with the idea that I will have less control over how I look - for the rest of my life. After transplant, I might get a puffy face from steroids. Or my hair might change color or texture. Or I might gain or lose weight. And I will have scars all over my chest.
This is not all that bad, I know. There are many who have lost more of their body than I have or will to other diseases or afflictions. Yet, anytime a person looks in the mirror and thinks, "who is that?"-it's not a good moment.
I am getting to know a more stripped-down version of myself. I know that this time has broken my addiction to being pretty all the time. I have gone through periods of time like this in the past. My freshmen and sophomore years of college were pretty "anti pretty." But this is the furthest I have ever gone in to the realm of not conforming to my pretty-potential. I can't say that I enjoy it. I wish I had never cut my hair. True confession: I hate my port. My skin is all pasty white and no more tanning for me :( and my hair is like 5 shades darker since I cut it and the IVs ruined it this summer/fall, and the Lupron darkens it too. That's right folks, I do not feel pretty and I am not happy about it.
At the same time, it provides a little relief to know that this is obviously not the stage of life where I'm gonna "catch myself a man" anyway, so what is the point, really, right? I don't know. I worry that I will not find love even after my transplant. I worry that my near misses so far are all that are in the cards for me. Which is more than some people have all their life, so I should not complain. I am glad to have learned that I don't care if I never find romantic love again, I have a lot of other types of love to live for.
What have I given up so far?
(some of) My friendships. When I got so sick this summer, I was suddenly hit with a wave of could be social anxiety, could be survival instinct, or could just be cattiness. With a large rush, I just wanted to cut the cord on many of my friendships prior to the transplant. I may pursue these friendships when I am well again, but for a myriad of reasons, there were a list of people that I just did NOT want around me during my time of great illness and healing.
It is unfortunate that people with CF or any other chronic illness have a lens through which they see all friendships. Will this person be with me through my sickness? If not, do I want to be friends with them anyway, and why? Sometimes, the answer is yes. Some friends are just good for fun, or a laugh, or some shared hobby or history together - though you know they are undependable you choose to accept them. In a time of health crisis or healing, however, there is no time for these cursory friends. No energy. No desire.
In my case, when I was sick this fall, my blood pressure and oxygen levels were so sensitive, that my blood pressure would spike when the phone rang. My oxygen would dip low when certain people came in the room just based on the change in my breathing. When I was trying to ween down from 12L of oxygen, I had to turn off my phone completely and ask the nurse to limit visitors to my room because it was driving my blood pressure up and my oxygen SAT down.
we just need to push aside SOME friends in these dire circumstances.
There are three friendships in particular that I have lost or curtailed in the past year. There are three specific reasons for this. One friendship ended because the person was not there for me - for three months. Though the person had been supportive of me in the past, as my health went downhill, she completely ignored me. I was in the hospital and adjusting to using oxygen at home and "out and about," dealing with a large shift in my lifestyle.
When she and I tried to patch things up, I went along for a few more months until I realized that I truly could not forgive her for abandoning me when I needed her, and even if I could forgive her (I have since,) I would never trust here again. While she expected me to be there for her every time she had a crisis, she had proven to be that she would not be there for me. How can a friendship keep building?
The second friendship, I hope to resume after my transplant. Over the past year of our friendship, I realized that my illness was becoming so central to our friendship - central to the person's interest or loyalty to me. In several situations, she would bring up CF around people I didn't know very well, and it would become the centerpiece of discussion, i.e. my life history would become the party game or "hot topic." Though unintentional, I think this friend was in some ways attached to my identity only through my illness, and not through a desire to know the whole me. As I began to realize this, every encounter with her became like being run over by a Mack truck. She would hound me about my health, and tell me, "THAT SUCKS! That's horrible!" about any little detail- even things that are just every day life with CF. I started to realize that the friend was more "caught up" in the idea that my life was bad (which it ain't!) and that she could "help" me (which she couldn't!), than on any real connection. When I got so suddenly ill in August, I just had to cut her loose. I did not have the emotional or physical energy to deal with her then, and I think the drama of dealing with her now would be just as bad for me (perhaps give me a setback I do not need). It is less than ideal, but I don't plan on having any contact with her 'til after my transplant, if then.
More laters....
This got me thinking about what I am giving up, what all recipients give up in the pre-transplant process that could come just before the dying process, and for many of us, leads to death.
I have been thinking, also, about what transplant recipients have to gain- and what many do. From the seemingly small ability to hold one's breath for a long time, to returning to sports that many abandon in childhood or adolescence, to having the time and energy to reach new heights in our careers, hobbies, friendships, and romances.
Because you know I love a tragedy, I want to first talk about what I believe I have given up since that moment when Dr. U-Bird^ said, "Why don't we make the call right now? Get your process started now?" knowing that if I left clinic and thought about it for another month it could mean a big difference in my care. That moment was just in August - only 4 months ago, and here I am, 2 1/2 months on The List.
What have I given up so far?
My job. I can't go so far as to say that I have given up my career but I most certainly have given up my job for a time. I miss my work dearly. I never realized how much of my personality is balanced by my work, how much my psychology is based around a sense of accomplishment (which now I can't seem to muster), how much my mind depends on busy-ness. I am asking myself these questions today:
What do I do when I have nothing to do?
What do I wear when I have nothing to dress "for"?
What do I think about when I have nothing to think about?
What do I talk about when there is no personal news to discuss?
I think that I always romanticized the past parts of my life that were dedicated to my illness. Times in the past where I was so sick that I couldn't go out of the house, I was always well enough to be reading something, or writing something. Also, at those times I was always in grad school, college or high school. I was always able to fill my time and expend my energy with intellectual goings on. At this time of my life, as I prepare for transplant, all of my energies must be directed on taking care of my Self, and the amount of energy I have to give to anything else is very little. I have had trouble even keeping up with my blog, emails and personal correspondence.
In the back of my mind, I thought I would be able to spend this time writing a great play or novel, reading all the books I never had time to read before, or watching all the movies that I should have seen. I even had visions of meditating for hours a day or reading the Bible front to back. I was overly attached to this romantic ideal of my spiritual/intellectual expansion while my physical abilities are limited. Now, part of me is greatly disappointed that "this" is all there is to do (sleeping, eating, medicines, pt, cpt, hot bath, repeat), and that "this" is really quite enough, sometimes too much, for a day.
So what have I given up? My job, my career (temporarily), but also the parts of my self-esteem that are attached to my intellect or academic pursuits. With that, of course, I will gain some understanding of other aspects of my Self- I am however, not on to that enlightenment yet.
What have I give up for transplant?
The way I look. I am very unhappy with how I look right now, and even less happy with the idea that I will have less control over how I look - for the rest of my life. After transplant, I might get a puffy face from steroids. Or my hair might change color or texture. Or I might gain or lose weight. And I will have scars all over my chest.
This is not all that bad, I know. There are many who have lost more of their body than I have or will to other diseases or afflictions. Yet, anytime a person looks in the mirror and thinks, "who is that?"-it's not a good moment.
I am getting to know a more stripped-down version of myself. I know that this time has broken my addiction to being pretty all the time. I have gone through periods of time like this in the past. My freshmen and sophomore years of college were pretty "anti pretty." But this is the furthest I have ever gone in to the realm of not conforming to my pretty-potential. I can't say that I enjoy it. I wish I had never cut my hair. True confession: I hate my port. My skin is all pasty white and no more tanning for me :( and my hair is like 5 shades darker since I cut it and the IVs ruined it this summer/fall, and the Lupron darkens it too. That's right folks, I do not feel pretty and I am not happy about it.
At the same time, it provides a little relief to know that this is obviously not the stage of life where I'm gonna "catch myself a man" anyway, so what is the point, really, right? I don't know. I worry that I will not find love even after my transplant. I worry that my near misses so far are all that are in the cards for me. Which is more than some people have all their life, so I should not complain. I am glad to have learned that I don't care if I never find romantic love again, I have a lot of other types of love to live for.
What have I given up so far?
(some of) My friendships. When I got so sick this summer, I was suddenly hit with a wave of could be social anxiety, could be survival instinct, or could just be cattiness. With a large rush, I just wanted to cut the cord on many of my friendships prior to the transplant. I may pursue these friendships when I am well again, but for a myriad of reasons, there were a list of people that I just did NOT want around me during my time of great illness and healing.
It is unfortunate that people with CF or any other chronic illness have a lens through which they see all friendships. Will this person be with me through my sickness? If not, do I want to be friends with them anyway, and why? Sometimes, the answer is yes. Some friends are just good for fun, or a laugh, or some shared hobby or history together - though you know they are undependable you choose to accept them. In a time of health crisis or healing, however, there is no time for these cursory friends. No energy. No desire.
In my case, when I was sick this fall, my blood pressure and oxygen levels were so sensitive, that my blood pressure would spike when the phone rang. My oxygen would dip low when certain people came in the room just based on the change in my breathing. When I was trying to ween down from 12L of oxygen, I had to turn off my phone completely and ask the nurse to limit visitors to my room because it was driving my blood pressure up and my oxygen SAT down.
we just need to push aside SOME friends in these dire circumstances.
There are three friendships in particular that I have lost or curtailed in the past year. There are three specific reasons for this. One friendship ended because the person was not there for me - for three months. Though the person had been supportive of me in the past, as my health went downhill, she completely ignored me. I was in the hospital and adjusting to using oxygen at home and "out and about," dealing with a large shift in my lifestyle.
When she and I tried to patch things up, I went along for a few more months until I realized that I truly could not forgive her for abandoning me when I needed her, and even if I could forgive her (I have since,) I would never trust here again. While she expected me to be there for her every time she had a crisis, she had proven to be that she would not be there for me. How can a friendship keep building?
The second friendship, I hope to resume after my transplant. Over the past year of our friendship, I realized that my illness was becoming so central to our friendship - central to the person's interest or loyalty to me. In several situations, she would bring up CF around people I didn't know very well, and it would become the centerpiece of discussion, i.e. my life history would become the party game or "hot topic." Though unintentional, I think this friend was in some ways attached to my identity only through my illness, and not through a desire to know the whole me. As I began to realize this, every encounter with her became like being run over by a Mack truck. She would hound me about my health, and tell me, "THAT SUCKS! That's horrible!" about any little detail- even things that are just every day life with CF. I started to realize that the friend was more "caught up" in the idea that my life was bad (which it ain't!) and that she could "help" me (which she couldn't!), than on any real connection. When I got so suddenly ill in August, I just had to cut her loose. I did not have the emotional or physical energy to deal with her then, and I think the drama of dealing with her now would be just as bad for me (perhaps give me a setback I do not need). It is less than ideal, but I don't plan on having any contact with her 'til after my transplant, if then.
More laters....
Thursday, November 26, 2009
Cluck Cluck Says the TBird
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
(some overlap)
1. My BiPap Machine
2. Prilosec
3. TOBI
4. Pulmozyme
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.
8. Prunes.
9. Gatorade
10. NAPS!!
What are you grateful for? Happy Thanksgiving! Have a great day!!
Love, CG
Monday, November 23, 2009
You Had Me At Hello
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.
EVERY DAY.
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.
Love,
CG
Saturday, November 21, 2009
Health Update and Fun for BiPap Use
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
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
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
Friday, September 25, 2009
Stream of Consciouness (Weekly Break From Overly Cerebral Posts...)
Quick updates. Today was certainly not as good of a day as yesterday. I was diggity dog tired most of the day. I slept a little later than I meant to (til 9), and ate a good breakfast, was sluggish through my morning meds and routine, and still felt poodidddly doo most of the day. Very very tired. Though I checked my O2 and heartrate and bp this morning, I was tooling around the house feeling very tired, and very clammy (many many hot flashes from the lupron at this particular week.) Around 2PM, yes, 2PM, I checked my oxygen, and though I was wearing 1.5L, my O2 was 83! Well no kidding I felt like poo. I was poo! So, I turned up the juice.
Having low oxygen creep up on you is such a menace. Like having bad blood sugar - you feel like crap just enough to know that you feel like crap, but that crappy feeling keeps you from having logical thoughts like "maybe I oughtta check my sugar," or "maybe my 02 is low?" Instead you lay around for a few hours wondering, vaguely, what might be wrong.
Also the POTpill didn't help. But I gained 3 lbs this week. No diggity. No doubt.
I blame this low 02 on my awesome workout yesterday. I must've made me some muscle mass :)
Tonight, I was happy to see that Jackie Warner's workouts are back on OnDemand for free :) !! I did the 1-on-1 core workout and it was awesome! During the workout I started to fantasize about Jackie coming to Boston to do rehab with me and turn me into a hot rockin new lung havin dancing diva. This resulting in the following tweet:
CysticGal@Jackiewarner10 i love your workouts. i have #cysticfibrosis and am preparing for transplant. i want you to come do rehab with me!
Then, I watched grey's anatomy with one of my besties, C-Daddy. He baked cookies, I ate two pudding cups, and then we watched the show while eating cookies, pudding cups and ice cream. The POTpill definetly helps with that calorie consumption! Grey's was pretty good but resulted in this tweet:
CysticGalon grey's tonight george o'malley died, donated lungs to patient with #cysticfibrosis. (fictional). Hard to watch with my pal, but good 2 c.
Poor C-Daddy and I both got all misty eyed and cried because well, there is a lot to to think about there.
Hmm. This post is not nearly so much stream o consciousness as I would like. It's more like stream o hello kitty diary.
Oh wells,
Goodnight, I'm gonna watch The Office and eat yet another pudding cup. I friggin love those pudding cups.
And don't you worry, DancingGal is coming!! I promise.
CG
Having low oxygen creep up on you is such a menace. Like having bad blood sugar - you feel like crap just enough to know that you feel like crap, but that crappy feeling keeps you from having logical thoughts like "maybe I oughtta check my sugar," or "maybe my 02 is low?" Instead you lay around for a few hours wondering, vaguely, what might be wrong.
Also the POTpill didn't help. But I gained 3 lbs this week. No diggity. No doubt.
I blame this low 02 on my awesome workout yesterday. I must've made me some muscle mass :)
Tonight, I was happy to see that Jackie Warner's workouts are back on OnDemand for free :) !! I did the 1-on-1 core workout and it was awesome! During the workout I started to fantasize about Jackie coming to Boston to do rehab with me and turn me into a hot rockin new lung havin dancing diva. This resulting in the following tweet:
CysticGal@Jackiewarner10 i love your workouts. i have #cysticfibrosis and am preparing for transplant. i want you to come do rehab with me!
Then, I watched grey's anatomy with one of my besties, C-Daddy. He baked cookies, I ate two pudding cups, and then we watched the show while eating cookies, pudding cups and ice cream. The POTpill definetly helps with that calorie consumption! Grey's was pretty good but resulted in this tweet:
CysticGalon grey's tonight george o'malley died, donated lungs to patient with #cysticfibrosis. (fictional). Hard to watch with my pal, but good 2 c.Poor C-Daddy and I both got all misty eyed and cried because well, there is a lot to to think about there.
Hmm. This post is not nearly so much stream o consciousness as I would like. It's more like stream o hello kitty diary.
Oh wells,
Goodnight, I'm gonna watch The Office and eat yet another pudding cup. I friggin love those pudding cups.
And don't you worry, DancingGal is coming!! I promise.
CG
Tuesday, September 15, 2009
Stream of Consciouness Is The Best Way To Write
When you write so much and so fast and you try not to stop and don't stop if you spell something wrong except for when you type sometimes it happens auto-matic-ally so usually i don't do this type of writing on a keyboard i prefer to do it with my hands so this is really an experiment and the one thing you try not to do and by you and mean i try not to use any sort of punctuation just try to get the juices flowing since it is 11 o'clock at night and though i like to start to write at ten, 11 o'clock at night will do today was hard.
well there we go.
today was hard and i went to the doctor and also i brought my friends one was human and one was pharmaceutical and both made passing the time easier except for that i was still bitchy sometimes on accident and playful sometimes on accident which really isn't that much different than the way i am in real life
like not at the doctor
it is weird that my type type typing fingers had to spell
doctor
twenty thousand times they could not get it right
write
so i went the doctor and brought my two friends t and v
t money
valium
and we had a lot of chatting and i told them i was collecting advice
i am like a tollbooth taker of advice and please would every one throw a coin in and also
don't forget that i am a monarchy
i make all the decisions
but you can't pass by without throwing a coin into the cup of
what to do about me
so i collected lots of coins today and that is a
metaphor that works so maybe i'll
write a poem like that tomorrow
and then i went home from the doctor with my full bag of coins
and stopped to make some art
or talk about hey do you want to make some art
on the way
which was good and i had my dance pants on and all
you can still wear dance pants if you have a nice ass
and an oxygen tank
it's ironic and fabulous
especially wearing pink
and i talked a little talk about hey let's make some art
and also collected a coin or two from a very nice man who says
you know the thing about art is you could always say
well i was just making some art, you know
and then i came home
called my mother
and my father
and my sister
and not yet my brother
because with all this news there was really no news to report
and he mostly has time on the weekend
my brother
he is busy collecting coins of his own ;)
Goodnight from my brain to yours,
CG
well there we go.
today was hard and i went to the doctor and also i brought my friends one was human and one was pharmaceutical and both made passing the time easier except for that i was still bitchy sometimes on accident and playful sometimes on accident which really isn't that much different than the way i am in real life
like not at the doctor
it is weird that my type type typing fingers had to spell
doctor
twenty thousand times they could not get it right
write
so i went the doctor and brought my two friends t and v
t money
valium
and we had a lot of chatting and i told them i was collecting advice
i am like a tollbooth taker of advice and please would every one throw a coin in and also
don't forget that i am a monarchy
i make all the decisions
but you can't pass by without throwing a coin into the cup of
what to do about me
so i collected lots of coins today and that is a
metaphor that works so maybe i'll
write a poem like that tomorrow
and then i went home from the doctor with my full bag of coins
and stopped to make some art
or talk about hey do you want to make some art
on the way
which was good and i had my dance pants on and all
you can still wear dance pants if you have a nice ass
and an oxygen tank
it's ironic and fabulous
especially wearing pink
and i talked a little talk about hey let's make some art
and also collected a coin or two from a very nice man who says
you know the thing about art is you could always say
well i was just making some art, you know
and then i came home
called my mother
and my father
and my sister
and not yet my brother
because with all this news there was really no news to report
and he mostly has time on the weekend
my brother
he is busy collecting coins of his own ;)
Goodnight from my brain to yours,
CG
Tuesday, September 8, 2009
"Cyster Fibrosis"
CysticGal(l) and CysticLady(r), approx. 1983?I grew up with a sister with CF. (CysticLady)
Yesterday I heard this is called having "Cyster Fibrosis."
I've been trying to write a poem to talk about what it is like to grow up with someone who
looks just like you
talks just like you
thinks just like you
like any other sister
but who is also carrying around
all of this.
I'm literally going to go dig in the basement for a journal.
I'm going to start looking there.
In the past.
Yesterday I talked on the phone with my oldest friend, S-Bestie. 
She and I grew up with each other and knew each other since we were very small. We lived in the same neighborhood for awhile, when people still played with the other kids that lived right there in their neighborhood. Then I moved, and moved back, I went to college, and she moved to Colorado. S- and I have always talked a lot over the years. But she is still my best friend.
S-Bestie (l) and CysticGal(r)- My Birthday, 1985
It was good to hear her ask me a few questions that I had not asked myself yet. It was good to hear her listen to my crazy mix of spiritual beliefs and not think I was a weirdo or try to get into some sort of religious debate. It was just good.
If I have no words to say tonight, perhaps I will have some words for later?
I had a great day today. I was on schedule with my meds, I did some crazy good yoga, and I ate a lot of foods.
Sunday, September 6, 2009
I Know It's Late and I Know You're Weary: Advice on Big Talks?
I wonder, how often CAN I use early 80s song titles as my blog post titles?
HOW OFTEN?!!
I am up late and thinking about a lot of things. I was just looking at my childhood best friend (S-Bestie^)'s blog about her artistic life. There she is, living there, a fabulous artist in her own right. I am here, living all the way over here, and thinking I'm some sort of artist too. But I never have made art with her, and yet I think her visual art relates a lot to my theatrical and written art.
Interesting.
I am also thinking a lot about news and refer you, CG Readers back to a post written by the famous CF Husband on his blog, about the difficulty of having these big talks about the big moments of our lives. How do we find the energy to have these big talks? When do we find the time? How many days will go by that I have to have a big talk?
I wish people still did not have computers, I could write letters to those I really love and not have to worry over the controlled release of my own information on the internet. Something strange to say, I guess, from someone writing a friggin' blog. But this would be a problem, blog or no. Even if I didn't have a blog, if I didn't have a facebook, if I weren't an email junkie- everyone else is. I have to know that as I start to share my health situation with people- it's gonna "get out there" on the interwebs to some people before I've had the chance to have the big talk with them.
And I just have to hope they don't get mad at me.
That's all tonight folks, I spent my time updating my shiizzzzle.
HOW OFTEN?!!
I am up late and thinking about a lot of things. I was just looking at my childhood best friend (S-Bestie^)'s blog about her artistic life. There she is, living there, a fabulous artist in her own right. I am here, living all the way over here, and thinking I'm some sort of artist too. But I never have made art with her, and yet I think her visual art relates a lot to my theatrical and written art.
Interesting.
I am also thinking a lot about news and refer you, CG Readers back to a post written by the famous CF Husband on his blog, about the difficulty of having these big talks about the big moments of our lives. How do we find the energy to have these big talks? When do we find the time? How many days will go by that I have to have a big talk?
I wish people still did not have computers, I could write letters to those I really love and not have to worry over the controlled release of my own information on the internet. Something strange to say, I guess, from someone writing a friggin' blog. But this would be a problem, blog or no. Even if I didn't have a blog, if I didn't have a facebook, if I weren't an email junkie- everyone else is. I have to know that as I start to share my health situation with people- it's gonna "get out there" on the interwebs to some people before I've had the chance to have the big talk with them.
And I just have to hope they don't get mad at me.
That's all tonight folks, I spent my time updating my shiizzzzle.
Thursday, September 3, 2009
I don't think CF is a gift from God.
1. My birth
2. My parents, CysticMommy and CysticDad
3. My siblings, CysticLady and CysticSibling
4. My best friend, S-Bestie.
4.5 My many mentors growing up and currently.
5. My laugh and each of the moments when I have had reason to use it.
6. My sense of humor which is an indirect gift from God, given to by through my Cparents, my grandparents, my aunts and uncles, and my Csiblings, and S-Bestie.
7. The town I grew up in.
8. My cat, B-Kitty.
9. My dog, Gracie, who has passed. She was a gift from God to my whole family.
10. My creativity.
11. My writings. The best things I have ever written just come to me. I do not even feel that I own them sometimes.
12. There is one thing that is a gift from God but I'm going to keep it private. But H-Mama knows what it is.
13. The men I have truly loved and the feeling of falling in love with them.
14. When I go to heaven or get to be an angel or am reincarnated nicely as a cat or something, that will be a gift too.
Conversely, I do not think the following things are gifts from God or the Universe. I believe that God and the Universe were obviously involved or aware of these things, perhaps they were discussed at some sort of "crappy things for CG" meeting, but I do not believe the following things are gifts, per se. (These are in response to the above)
1. The way that I will die, whether hit by a mack truck or otherwise.
2. Cystic Fibrosis
3. My sister, CysticLady, having to have Cystic Fibrosis TOO. Nor my brother being born in the middle of two CysticWomen, when he could've been born between two normal Women and that would've been enough for him- jeesh.
4. The friends I have lost over the years.
5. The people that don't like my laugh, though it is obnoxious. If you don't like somebody's laugh, you got to think about your attitude. Lighten up people. Obnoxious laughs (like mine) are double funny. You can laugh once at the joke, and once at me, and I won't even know it! I always secretly wonder if that is why people laugh so much when I say stupid things.
6. Ditto on people that don't like my sense of humor. I have found that they are usually humorless people in general.
(7-9. Nothing bad to say about my hometown or pets)
10. The inappropriate parts of my creative thinking and sense of humor, and my lack of control of said creative thinking and the expression thereof.
11. The fact that very few people read the things I write. I mean, God did not gift me a publicist or anything.
12. In terms of number 11, it is not a gift from God, always, to have this gift from God. (oooh....mysterious).
13. The men I have truly loved in vain.
14. I am not delving into this one. No way, man. Not on a blog. God could read it!
I don't think CF is a gift from God. I think it is a challenge from God, sent to develop my gifts and the gifts of those around me.
Food for thought...
Love, CG
Sunday, August 30, 2009
A follow up to NUMBER 9 (...Number 9... Number 9 . . .)
Such a firestorm was lit by my little top ten list, Ten Things a CG Wants to Say last night. I am so glad I wrote it, but what a whacky ride today was watching the comments and emails and some phone calls come in.
Two and a Half Points for ToNight:
POINT ONE:
I feel, at this time, that I must be honest with you, the reader, and tell you something about the blog that you might have already intuited through reading it, or you might not have. This might be an element of the blog that you view as a turn-on, or a turn-off. This might be something you had not considered but do not really care about either way.
Any way you take it, I must share with you that everything I write in this blog abides by a code of truthiness. Not a single thing in this blog is a lie. However, some things may not be particularly true.
[Truthiness is a term first used in its recent satirical sense by American television comedian Stephen Colbert in 2005, to describe things that a person claims to know intuitively or "from the gut" without regard to evidence, logic, intellectual examination, or facts.[1] ]
For example, in regards to yesterday's list: I posted it yesterday, but I started writing it weeks ago. So, there is no really true time-stamp on things said in the blog like "yesterday, last week, this year..." etc. I've been a writer for about 23 years :) so I have a pretty big pool to draw from. And I'm not even kiddin' about that, y'all.
Not a big deal on the one hand, because I just want the writing to be truthful and have an effect. On the other hand, when I sent out Ten Things a CG Wants to Say last night, people were calling me and asking :
1. You got dumped by a bald guy last week? When did you get back with HIM?
2. I thought you stopped talking to your neighbor?
3. Why are you still on that chatroom?
4. Who called you from work and oh my god, what did they say?
5. I did send you a card, thank you very much! ...
etc!
Notice, the topics was "Ten Things a CG Wants to Say", not "Ten Things THIS CG Wants to Say." I have an idea for a post tomorrow based on a tweet I got today. That blog is going to be written for that tweeter. I want to write things that I think are universal for the patient experience, not all of them are going to be true for me in the very moment that I explore them on the blog.
POINT ONE POINT FIVE
I will be deleting comments that are personal narrative or use my real name or town or etc. Though I currently use my name on the blog, I work in an industry where I am always up for work, getting work, being googled, etc. So, I might periodically go anonymous on the blog and just take my name off it.
I also want to continue to use the blog to serve its audience, not my personal correspondence. That's what email and facebook are for!
POINT TWO:
What a wonderful conversation was opened up surrounding the topic of privacy vs. support at the bedside! My own T-Money and I had a wonderful conversation about the delicate balance it is to be a patient in the room, and a caregiver at the bedside. It seems that the moment a patient wants to be alone, it can be closely followed by the moment s/he wants a companion. No one has a proper etiquette book and CF can be an ugly, indelicate, impolite disease.
Sometimes patients want it all: They want to have privacy when they aren't at their best, but they need arms around them to help them feel better. Caregivers want it all too: They want so badly to do "the right thing" when none of their actions feel "right" because the situations themselves are very difficult.
My CysticMommy and I then talked about my responsibility to work on saying what I need when well-meaning friends come by my house and drop by with food. I could as easily say, "You can put the casserole down, I made coffee, tell me what's going on with you. I miss you!" instead of letting them lead the conversation and come and go so quickly.
Then, CysticLady and I talked and she shared that it's just good to get it all out on the table. With CF, most of the day we are battling battling battling to put our health first. It can be exhausting sometimes to have to be the director of every little thing like the smoking man at the cross-walk, or the neighbor at the end of the driveway. Sometimes you just gotta let it float by til a few months later you write a funny/sad blog about it!
Goodnight y'all!
CG
Two and a Half Points for ToNight:
POINT ONE:
I feel, at this time, that I must be honest with you, the reader, and tell you something about the blog that you might have already intuited through reading it, or you might not have. This might be an element of the blog that you view as a turn-on, or a turn-off. This might be something you had not considered but do not really care about either way.
Any way you take it, I must share with you that everything I write in this blog abides by a code of truthiness. Not a single thing in this blog is a lie. However, some things may not be particularly true.
[Truthiness is a term first used in its recent satirical sense by American television comedian Stephen Colbert in 2005, to describe things that a person claims to know intuitively or "from the gut" without regard to evidence, logic, intellectual examination, or facts.[1] ]
For example, in regards to yesterday's list: I posted it yesterday, but I started writing it weeks ago. So, there is no really true time-stamp on things said in the blog like "yesterday, last week, this year..." etc. I've been a writer for about 23 years :) so I have a pretty big pool to draw from. And I'm not even kiddin' about that, y'all.
Not a big deal on the one hand, because I just want the writing to be truthful and have an effect. On the other hand, when I sent out Ten Things a CG Wants to Say last night, people were calling me and asking :
1. You got dumped by a bald guy last week? When did you get back with HIM?
2. I thought you stopped talking to your neighbor?
3. Why are you still on that chatroom?
4. Who called you from work and oh my god, what did they say?
5. I did send you a card, thank you very much! ...
etc!
Notice, the topics was "Ten Things a CG Wants to Say", not "Ten Things THIS CG Wants to Say." I have an idea for a post tomorrow based on a tweet I got today. That blog is going to be written for that tweeter. I want to write things that I think are universal for the patient experience, not all of them are going to be true for me in the very moment that I explore them on the blog.
POINT ONE POINT FIVE
I will be deleting comments that are personal narrative or use my real name or town or etc. Though I currently use my name on the blog, I work in an industry where I am always up for work, getting work, being googled, etc. So, I might periodically go anonymous on the blog and just take my name off it.
I also want to continue to use the blog to serve its audience, not my personal correspondence. That's what email and facebook are for!
POINT TWO:
What a wonderful conversation was opened up surrounding the topic of privacy vs. support at the bedside! My own T-Money and I had a wonderful conversation about the delicate balance it is to be a patient in the room, and a caregiver at the bedside. It seems that the moment a patient wants to be alone, it can be closely followed by the moment s/he wants a companion. No one has a proper etiquette book and CF can be an ugly, indelicate, impolite disease.
Sometimes patients want it all: They want to have privacy when they aren't at their best, but they need arms around them to help them feel better. Caregivers want it all too: They want so badly to do "the right thing" when none of their actions feel "right" because the situations themselves are very difficult.
My CysticMommy and I then talked about my responsibility to work on saying what I need when well-meaning friends come by my house and drop by with food. I could as easily say, "You can put the casserole down, I made coffee, tell me what's going on with you. I miss you!" instead of letting them lead the conversation and come and go so quickly.
Then, CysticLady and I talked and she shared that it's just good to get it all out on the table. With CF, most of the day we are battling battling battling to put our health first. It can be exhausting sometimes to have to be the director of every little thing like the smoking man at the cross-walk, or the neighbor at the end of the driveway. Sometimes you just gotta let it float by til a few months later you write a funny/sad blog about it!
Goodnight y'all!
CG
Saturday, August 29, 2009
Ten Things A CG Wants To Say: The post so crazy even my disclaimers need disclaimers.
1. To the guy that broke up with me right after I got out of the hospital: You are cowardly, and selfish, and also bald*.
2. To the neighbor who keeps asking me when I'm going to get better: I am not going to get better. Google CF already.
3. To the lady who keeps sending me bizarro emails about one of my comments on health care: Democracy and free speech are a bitch. Leave me alone.
4. To [people] who wondered why I'm still working: So that I can do fun things like buy groceries and pay my rent. Oh, and because I love my job and I'm actually really good at it.**
5. To my extended family members who don't send me a get well card anymore when I get sick: It would be nice to get a get well card when I get sick.
6. To my acquaintances who want to drop by the house: I don't need a casserole, I need you to hang out with me like a normal human. And I don't like casseroles.***
7. To my cat who is sweet, laying in bed with me while my port needle is being changed: You are the best and could you write a book on dating for men who date women with CF?
8. To the person who smokes a cigarette next to me outdoors and waits until I ask them to move away from me: Move away from anyone that you see with oxygen on and quit smoking already.****
9. To the people who visited me in the hospital that literally ran out of the room when I started coughing: I know you were trying to give me privacy, but that made me cry.*****
10. To the nurses and doctor and family and friends and bloggies that are nice to me even when I'm crazy: Thank you and I'm sorry.
Love, CG
*I would not normally make fun of someone for being bald. In fact, I believe the saddest thing to come of this last relationship is that now I am, in fact, attracted TO bald guys. However, I couldn't think of anything else mean to say and the one thing I know about bald guys is that they are sensitive about being bald.
**None of my current colleagues have actually said "You should stop working," to me. But, it's an idea out there in the world. It's an idea. Like it's an idea that people think about their oldest co-worker . . . "Why is s/he even here?" Go on, admit it. It's an idea out there.
***I am going to work at saying, "Please bring me yellow curry chicken (thai)" and "Please come in and hang out for a while. I miss you." even if it's sort of awkward.
****Yeah yeah yeah, nicotine is an addiction. So is heroine. But I don't have to walk through ten heroin addicts on the way into any public place, and if I did, I wouldn't feel bad giving them a weird look either. I just think it's really funny when I'm standing somewhere, like at a crosswalk, and a smoker comes up and stands next to me, looks at me, I look at him, and then it's like, "Which one of us is gonna walk away?" - as though it should be me? Isn't there some sort of chivalrous smoker etiquette? Where is Emily Post when you need her.
*****See future posts. This one really started a firestorm! This is not about YOU. It's about PEOPLE who visit PEOPLE with CF. And maybe a little about you. But not in a mean way. Just like, something I'm thinking about. Let's keep thinking and chatting about it. Okay. 'Nuff said.
2. To the neighbor who keeps asking me when I'm going to get better: I am not going to get better. Google CF already.
3. To the lady who keeps sending me bizarro emails about one of my comments on health care: Democracy and free speech are a bitch. Leave me alone.
4. To [people] who wondered why I'm still working: So that I can do fun things like buy groceries and pay my rent. Oh, and because I love my job and I'm actually really good at it.**
5. To my extended family members who don't send me a get well card anymore when I get sick: It would be nice to get a get well card when I get sick.
6. To my acquaintances who want to drop by the house: I don't need a casserole, I need you to hang out with me like a normal human. And I don't like casseroles.***
7. To my cat who is sweet, laying in bed with me while my port needle is being changed: You are the best and could you write a book on dating for men who date women with CF?
8. To the person who smokes a cigarette next to me outdoors and waits until I ask them to move away from me: Move away from anyone that you see with oxygen on and quit smoking already.****
9. To the people who visited me in the hospital that literally ran out of the room when I started coughing: I know you were trying to give me privacy, but that made me cry.*****
10. To the nurses and doctor and family and friends and bloggies that are nice to me even when I'm crazy: Thank you and I'm sorry.
Love, CG
*I would not normally make fun of someone for being bald. In fact, I believe the saddest thing to come of this last relationship is that now I am, in fact, attracted TO bald guys. However, I couldn't think of anything else mean to say and the one thing I know about bald guys is that they are sensitive about being bald.
**None of my current colleagues have actually said "You should stop working," to me. But, it's an idea out there in the world. It's an idea. Like it's an idea that people think about their oldest co-worker . . . "Why is s/he even here?" Go on, admit it. It's an idea out there.
***I am going to work at saying, "Please bring me yellow curry chicken (thai)" and "Please come in and hang out for a while. I miss you." even if it's sort of awkward.
****Yeah yeah yeah, nicotine is an addiction. So is heroine. But I don't have to walk through ten heroin addicts on the way into any public place, and if I did, I wouldn't feel bad giving them a weird look either. I just think it's really funny when I'm standing somewhere, like at a crosswalk, and a smoker comes up and stands next to me, looks at me, I look at him, and then it's like, "Which one of us is gonna walk away?" - as though it should be me? Isn't there some sort of chivalrous smoker etiquette? Where is Emily Post when you need her.
*****See future posts. This one really started a firestorm! This is not about YOU. It's about PEOPLE who visit PEOPLE with CF. And maybe a little about you. But not in a mean way. Just like, something I'm thinking about. Let's keep thinking and chatting about it. Okay. 'Nuff said.
Friday, August 28, 2009
There's Always Tomorrow
Today was not that much better than yesterday. But it was better.
Things that made it better:
1)I called the CF Clinic and said, Hey man, this thing where I have to take 1/2 of my anti-depressant because of it's contraindication with my oral antibiotic is, like, uh, not working. Since I'm crying and sleeping all day and stuff. So we agreed that after these 3 weeks, I can go back to the antidepressant at full blast and stop taking that particular antibiotic (1 of the 3 I'm on currently).
2) I called my friends back (T-Money and H-Mama). Both called me yesterday and though I have to admit, I didn't really enjoy talking to them since I was all doomy and gloomy, it was better that I talked to them. Ditto for CysticMommy and CysticLady.
2.5) I still took a nap. I decided that no day is so bad, or so good, that taking a nap cannot indeed make the day even better. KEY: I limited my nap to a decent 2 hours. A normal-people-nap. I even answered my phone when N-Pregg called from clinic. I was not in the DOOM NAP. I was in a normal sleepy nap.
3) I had dinner with T-Money, H-Mama, J-Frusb, J-Baby and M-blankie. Nothing to brighten the mood like meeting a friend's new cat and holding a friend's baby, who officially learned what an "owwie" was by pointing at my port site. I even think I heard her say "All wrapped up!" back to me as I explained it to her. That J-Baby, she's a J-Genius. I also used my crazy cat lady skillz to coax M-blankie out from under the bed.
4) I outted my blog onto my facebook so now my blog is officially out of the closet. Everyone in my life can read the juice details of this health conundrum I'm in. "And F 'em if they can't take a joke" about some of the posts for chriy-yie.
5) I made dinner plan with a certain gentleman tomorrow for Jazz music, O2 sniffing and yummy food. It is certain to be the best non-date I've had in awhile. (Though I'll miss J-Teach, who is out of town).
In closing of tonight's post:
1. Do not pretend you are over the gloom or the doom (OGD) until indeed you are OGD.
2. Communicate with your docs when you are feeling EGD. Ask yourself, "Are there any chemical reasons that I am EGD?" Things that can lead to EGD: changes to psych meds (duh); pain meds; low O2; hormonal changes (either pharmaceutical or natural); alcohol use; low blood pressure; nutrition problems; blood sugar problems; etc. Adjust what you can with your doc's approval if you sense a problem.
3. Call back at least 1/2 of the people that call you (let's be realistic here.) See #1. It is very important to remember #1 when you do #2 or you will have to revert to yesterday's post altogether.
4. Call back family members and still adhere to #1 unless indeed you are OGD.
5. Take a reasonable length nap. There is never a day so good, nor so bad, that a nap cannot make it infinitely better.
6. Create a specific plan to be around another human, any human, and consume foods. If pets and babies can be involved, all the better. Pets nor babies are capable of EGD, and being around them increases the chances of one becoming OGD at a faster rate.
7. Be more honest with more people about your feelings. This is a good non-EGD rule as well.
8. Make some special plans for some special sort of something to happen at a future time, so that you will look forward to it and have a goal to be OGD by that time.
Goodnight and a non-EGD day to you,
CG
Things that made it better:
1)I called the CF Clinic and said, Hey man, this thing where I have to take 1/2 of my anti-depressant because of it's contraindication with my oral antibiotic is, like, uh, not working. Since I'm crying and sleeping all day and stuff. So we agreed that after these 3 weeks, I can go back to the antidepressant at full blast and stop taking that particular antibiotic (1 of the 3 I'm on currently).
2) I called my friends back (T-Money and H-Mama). Both called me yesterday and though I have to admit, I didn't really enjoy talking to them since I was all doomy and gloomy, it was better that I talked to them. Ditto for CysticMommy and CysticLady.
2.5) I still took a nap. I decided that no day is so bad, or so good, that taking a nap cannot indeed make the day even better. KEY: I limited my nap to a decent 2 hours. A normal-people-nap. I even answered my phone when N-Pregg called from clinic. I was not in the DOOM NAP. I was in a normal sleepy nap.
3) I had dinner with T-Money, H-Mama, J-Frusb, J-Baby and M-blankie. Nothing to brighten the mood like meeting a friend's new cat and holding a friend's baby, who officially learned what an "owwie" was by pointing at my port site. I even think I heard her say "All wrapped up!" back to me as I explained it to her. That J-Baby, she's a J-Genius. I also used my crazy cat lady skillz to coax M-blankie out from under the bed.
4) I outted my blog onto my facebook so now my blog is officially out of the closet. Everyone in my life can read the juice details of this health conundrum I'm in. "And F 'em if they can't take a joke" about some of the posts for chriy-yie.
5) I made dinner plan with a certain gentleman tomorrow for Jazz music, O2 sniffing and yummy food. It is certain to be the best non-date I've had in awhile. (Though I'll miss J-Teach, who is out of town).
In closing of tonight's post:
To Feel Better When You Are Extremely Gloom and Doom (EGD):
1. Do not pretend you are over the gloom or the doom (OGD) until indeed you are OGD.
2. Communicate with your docs when you are feeling EGD. Ask yourself, "Are there any chemical reasons that I am EGD?" Things that can lead to EGD: changes to psych meds (duh); pain meds; low O2; hormonal changes (either pharmaceutical or natural); alcohol use; low blood pressure; nutrition problems; blood sugar problems; etc. Adjust what you can with your doc's approval if you sense a problem.
3. Call back at least 1/2 of the people that call you (let's be realistic here.) See #1. It is very important to remember #1 when you do #2 or you will have to revert to yesterday's post altogether.
4. Call back family members and still adhere to #1 unless indeed you are OGD.
5. Take a reasonable length nap. There is never a day so good, nor so bad, that a nap cannot make it infinitely better.
6. Create a specific plan to be around another human, any human, and consume foods. If pets and babies can be involved, all the better. Pets nor babies are capable of EGD, and being around them increases the chances of one becoming OGD at a faster rate.
7. Be more honest with more people about your feelings. This is a good non-EGD rule as well.
8. Make some special plans for some special sort of something to happen at a future time, so that you will look forward to it and have a goal to be OGD by that time.
Goodnight and a non-EGD day to you,
CG
Tuesday, August 18, 2009
Home Again, Home Again, Jiggety Jig
I am home tonight. Thus, an equation:
1 Cystic Gal+
2 Cats +
O2 Concentrator+
IV Meds+
Normal Meds+
Treadmill+
Peapod Delivery+
Laundry Drop Off+
Wanessa (if you don't know, you haven't been reading!)+
Full TIVO+
CysticLady+
H-Mama, J-Frusb, T-Money, J-teach+
All of my colleaguial love and support+
Bloggy Following and Support+
Awesome CF Team+
At least 3 Faux-Boyfriends=
_____________________________
1 Happy, but busy, Cystic Gal at the at-home hospital
More tomorrow! L'Chaim!
1 Cystic Gal+
2 Cats +
O2 Concentrator+
IV Meds+
Normal Meds+
Treadmill+
Peapod Delivery+
Laundry Drop Off+
Wanessa (if you don't know, you haven't been reading!)+
Full TIVO+
CysticLady+
H-Mama, J-Frusb, T-Money, J-teach+
All of my colleaguial love and support+
Bloggy Following and Support+
Awesome CF Team+
At least 3 Faux-Boyfriends=
_____________________________
1 Happy, but busy, Cystic Gal at the at-home hospital
More tomorrow! L'Chaim!
Friday, July 24, 2009
No Full Moon? Big Disappoinment. A non-CF post just to update.
I cannot believe there was not a full moon this week.
Tonight's blog will be short. In fact, it is 12: 20 AM so I really missed Friday's deadline. Today, I stayed home sick to do my meds and airway clearance (in which I made great strides, and if your doc ever wants to show your CT, watch it. It's a great motivator for the hows/whens/how muchs of your airway clearance!).
Whilst I was staying home, a man tried to break into my house, apparently to beat up another man. A "black man!" which made him yell that at me through the window, which made me think he was a) crazy b) a rapist for wanting to "hang up the phone! There's a black man!!!", c) scary scary scary. d) a racist. Did I mention that he had no shirt on and some crazy tattoos?
I had quiet a day after that. Nuff said. Where IS Kyra Sedgwick when you need her? Sargeant Provenza would have been all over this.
Thank god for valium, naps, friends and sleep.
T-Money and J-Teach came over. They are the best of friends, goodnight.
Tonight's blog will be short. In fact, it is 12: 20 AM so I really missed Friday's deadline. Today, I stayed home sick to do my meds and airway clearance (in which I made great strides, and if your doc ever wants to show your CT, watch it. It's a great motivator for the hows/whens/how muchs of your airway clearance!).
Whilst I was staying home, a man tried to break into my house, apparently to beat up another man. A "black man!" which made him yell that at me through the window, which made me think he was a) crazy b) a rapist for wanting to "hang up the phone! There's a black man!!!", c) scary scary scary. d) a racist. Did I mention that he had no shirt on and some crazy tattoos?
I had quiet a day after that. Nuff said. Where IS Kyra Sedgwick when you need her? Sargeant Provenza would have been all over this.
Thank god for valium, naps, friends and sleep.
T-Money and J-Teach came over. They are the best of friends, goodnight.
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